Bad Cripple

No Celebrating Here

2012-02-01T08:43:00.000-08:00

On January 13 a post entitled Brick Walls at Wolfhirschhorn.org caused a media frenzy. I wrote about this as did many others devoted to disability rights. The story puzzled me from its inception. Organ transplants are rationed and people die waiting for organs. I knew that disability bias exists when deciding who does and does not get a transplant. I accept this as a given. I assume if I ever needed a transplant I would be denied based on the mere fact I am paralyzed. Yet people seemed shocked when a CHOP denied a cognitively disabled child an kidney. The denial was based on her quality of life and cognitive ability. In my estimation, the only thing that was different about the Rivera case was how blunt the doctors were with the parents. The subsequent uproar and firestorm across disability related blogs is a sign of just how fast news can travel. Thus the Rivera case differs in one key way from Sandra Jensen circa 1995. A supposed resolution with the hospital has quickly been reached.

My depressing take on the Rivera case is that one child will benefit. Once the media attention wanes, and it has already waned, hospitals and transplant teams will quietly go back to business as usual. Nothing has changed--disability bias does not go away overnight. It is alive and well in hospitals across this country. I have no doubt CHOP will institute new policies--those policies will not change the decision making process but rather make the language it uses more palatable. Much lip service will be given to disability rights. My gloomy assessment diverges from the latest post at wolfhirschorn.org entitled "A Life Changing Event..for the Greater Population". I quote:

"The power of social media continues to thrive. The experience of this story going viral is a unique event that we are likely to be a part of only once in a lifetime. As the story continues to buzz, it is quickly moving into a political and public forum. Senator Sweeney from New Jersey has already pushed forward action on transplant rights for the disabled, and CHOP has made contact with the state to address this matter. The wheels are in motion for change at a larger scale.
The outcome of Chrissy posting her article will likely end up with the best possible solution for Mia. Mia will get the best treatment available, whether it is at CHOP or another hospital. In addition to Mia receiving the best of care, rights for the disabled will continue to gain steam and recognition. Discrimination against our kids needs to be addressed and maybe this is just what we needed to see happen.
The success of this event can’t go forward without recognizing our community as a whole. Because of all the contributors, parents, wolfhirschhorn.org followers and advocates of our kids, this wave would never have happened. Thanks to all of you for being a part of a building trend to give our kids the stage they deserve.
And finally, check out some of the vitals of the story…they are quite amazing:
Average site traffic per day, 3 weeks before the article went viral: 165 visits/day
Total site traffic since the article was posted 2 weeks ago: 387,000 visits
Largest source of referrals on the day the story went viral: 91% from Facebook, 2% from Change.org".

No doubt social media played a key role in the Rivera case. And there is no doubt the outcome for the child in question is far more positive than it would have been without the national attention. But I do not share the belief that larger scale changes will take place any time soon. The decision and process involved in who receives an organ is inherently flawed and biased. We can only do our best to minimize the bias. This decision making process is complex, nationwide in scope; political, social and economic variables all come into play. To suggest otherwise is simply naive. Organs are rationed--this is a fact. When it comes to rationing I have no doubt people with a disability will be at the bottom of the priority list. This is a social reality that has not changed measurably in my life time. Perhaps I am just cranky. This winter has been a disaster. Warm temperatures and no snow have left me frustrated in the extreme. Then again, I am a realist. I have experienced the brunt of prejudice for 34 years. I do not think disability bias will disappear because people flocked to Facebook and signed an on line petition.

Love the Irony

2012-01-23T11:23:00.000-08:00

I have never met Penny Richards but admire her posts at Disability Studies, Temple University blog. When I got into the blogging world the Temple University blog was one of the first I read. I still read it regularly years later. I particularly like the historical entries--figures in disability history I never heard of. The Temple blog does not comment enough on contemporary issues. However when someone such as Richards does write I take note. And I just read the below. I absolutely love it! Commenting on the transplant controversy that has so many people upset Richards wrote:

"So let me get this straight...
If parents walk into a children's hospital and ask for a highly unconventional series of surgeries to remove healthy tissue and organs, limiting their daughter's growth... a series of surgeries that would never be performed on a nondisabled child... the answer is, fine, because she's developmentally disabled?
BUT, if parents walk into a children's hospital and ask for a very standard surgery to treat an organ that isn't functioning properly, a surgery that will improve their daughter's health and very probably prevent an early death... a surgery that is routinely performed on nondisabled children... the answer is no way, because she's developmentally disabled?
Got it."

Not many outside the world of disability get it. The transplant team did not get it. Growth attenuation doctors in Seattle did not get it. Secondary schools do not get it. Businesses do not get it. Universities do not get it. But some of us do get it. And let me tell you those of us who get are not liked. We are considered uppity. I have been told repeatedly that I do not have a chip on my shoulder but a boulder. Good. When I am considered equal to those that walk rather than use a wheelchair said boulder will vanish. How dare I expect to be treated equally! How dare I expect to travel without a never ending hassle. How dare I expect the lift on a bus to work. How dare I expect to be employed. And now I can add how dare I receive a transplant.

Disability, Bioethics and Transplantation: Problems Abound

2012-01-20T07:53:00.000-08:00

There is a long standing tension between bioethicists and disability rights activists and scholars. The exchanges between bioethicists and disability studies scholars in press and in person are polemical and often mean spirited. These exchanges transcend routine and strongly held scholarly differences. Simply put, there is a deep rooted personal and intense dislike between disability scholars and bioethicists. For example, Stephen Drake commenting on Peter Singer wrote that his "work as it pertains to euthanasia, infanticide, and personhood--the idea that some human beings are persons and others are not--is riddled with sloppiness and even dishonesty. To be fair, those traits aren't Singer's unique domain in the field of bioethics. Bioethics is a field that doesn't seem to demand intellectual integrity and honesty from professionals within its fold". Drake's harsh words are well within the norm. I get Drake's animosity--it is hard for any person with a disability to not take comments by bioethicists to heart.

Bioethicists and disability scholars have radically different views on topics such as growth attenuation, the medical treatment of infants born with disabilities, prenatal testing, life support, and end of life issues to mention a few hotly debated subjects. I hold a pessimistic view of whether bioethicists and disability scholars will ever be able to work together. Distrust runs too deep in spite of the fact bioethicists have made efforts to consider disability as a central issue. Some scholars such as Alicia Quellette in her book Bioethics and Disability contend "disability is now part of the conversation" and no longer a "shadow issue". I think this observation is far too optimistic. I also do not share Quellette's belief that bioethics as a "field is ripe for a change". In my estimation, bioethicists as a group have utterly failed to grasp much less try to overturn the gross injustices people with a disability routinely encounter. Bioethicists pay lip service to what they call the "disability perspective. Such lip service was on display this week when I read and heard comments by Art Caplan about the Amelia Rivera case (According to her parents Amelia Rivera was turned down for a kidney transplant because she has a cognitive disability). Caplan is the Director of the Center for Bioethics at the University of Pennsylvania and seems to be the go to guy when the mainstream press needs a sound bite from a bioethicist. When the Rivera case spread across the internet like wild fire I was disinterested. I was not at all surprised the Rivera family was told their daughter was not a candidate for a kidney transplant because she was "retarded"--not even if the kidney came from a family member. The bias the Rivera family encountered was nothing new to me or parents of children with profound cognitive disabilities. In fact I would characterize the bias against people with a physical or cognitive disability as routine, ordinary even, in the health care system. And this is why Art Caplan gained my attention; in "Serious Issues in Disabled Girl Transplant Case" he wrote just enough to appear unbiased and supportive of people with a disability. For example, Caplan noted "The issue of disability and access to a life-saving transplant merits serious reflection". He continues:

"Whether the kidney comes from a cadaver donor or a living one, transplant teams always think about a set of medical facts in deciding whether to transplant anyone. Is the person able to go on kidney dialysis? Is she healthy enough to survive surgery? Does the patient have a donor who closely matches her blood and tissue type increasing the chance that the transplant will work? There is nothing special about the presence or absence of mental disability with respect to these questions. But morally, things get a little stickier."

The phrase "morally things get a little stickier" is deeply problematic. Caplan correctly notes the transplant team needed to consider who would care and manage post surgery medications for a person with a cognitive disability. Transplant teams need to consider the long term survival of a person with a cognitive disability who may present other daunting medical conditions. Transplant teams must consider whether a person with a cognitive disability lives in an institution. All these points are valid. Yet I consider his contention that "each case involving a disabled person has to be looked at individually" misleading. If each case was looked at as Caplan suggests why did most transplant programs refuse to even consider a person with a cognitive disability until the mid 1990s. More to the point why are people with cognitive disabilities not often placed on waiting lists for organ transplantation? Could it be institutional and social bias is rampant? The point I am trying to make is Caplan is ignoring important questions that are social and not medical. For example, all people with a cognitive disability should receive adequate health care and support services. This is often not the case. And why do people with a cognitive deficit live in an institutional setting? In my estimation Caplan wants to restrict his observations to medical criteria and ignore all social and cultural variables. I am not suggesting transplant teams ignore medical criteria--I gladly accept these are the primary factors. But we do not live in a medical vacuum. Bias is not left outside the hospital door when medical decisions are made. Thus I find the conclusion to Caplan's essay frustrating in the extreme.

"There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases."

Bias against those with a cognitive disability is a given in my estimation. This population's humanity is not acknowledged. People with a cognitive disability do not share the same freedom, equality, dignity, and justice as "normates" to use Garland-Thomson's awkward word. Some scholars have even argued that people with profound cognitive disabilities are nonhuman. As such they do not share the same basic human rights that are enjoyed by those with the ability to reason. To me, such arguments reveal the inherent value of the social model of disability. The "problem" is not a given physical or cognitive impairment but rather the refusal of society to willingly incorporate that difference. This refusal leads to social oppression that is deeply ingrained and has a long history. I am reminded of this history every time I drive to Vermont and pass the boarded up Hudson Valley Psychiatric Center. I shudder every time I pass this facility and wonder how many lives were lost and destroyed. Here is where I depart from Caplan and other bioethicists. For me bioethics and disability scholarship is personal. It is not an interesting intellectual exercise. It is not a job. It is not career. I want to do nothing less than ameliorate bias. I want to live in a world where disability is an accepted and a normal part of the human condition. I want to live in a world where the parents of Amelia Rivera do not make headlines. This is about much more than one little girl and her parents who encountered gross bias. Her story exposes a dark under belly of ingrained social exclusion for those with a cognitive disability. If you think I am being overly dramatic I suggest you read the comments posted to the article by Caplan or those published in USA Today, Huffington Post and other news media outlets. The bias there is shocking and it is a given kidneys do not go to "retards" thereby reinforcing my belief our culture does not value the existence of people like Rivera and me for that matter.

Organ Transplants and Disability Discrimination

2012-01-17T05:41:00.000-08:00

Disability related blogs are abuzz about a blog entry, Brick Walls, written by Chrissy Rivera. In short, the Children's Hospital of Philadelphia refused to provide an organ transplant for a two year old girl. The child in question has Wolf-Hirschorn Syndrome and needs a kidney transplant within six months to a year. Without a transplant she will die. Wolf-Hirschorn syndrome is a rare genetic condition and involves delayed growth, seizures, and cognitive deficits. According to Rivera, the sole reason her daughter was denied a kidney transplant was because she was "retarded". She was not eligible for any kidney--even a kidney donated by a family member. This story has blazed a trail across the internet, particularly within the "children with special needs" needs community. The mainstream press has picked up the story--reports have been on local television news programs in Philadelphia and USA Today ran a story. The hospital is under a siege of complaints. The hospital Facebook page has been flooded with howls of protests. An online petition has been signed by over 16,000 people and the hospital is in full damage control.

None of the above surprises me. I am not at all surprised the hospital denied a child with a cognitive disability a transplant. I would not be surprised if the hospital denied a person with a physical disability, any physical disability, a transplant. I would not be surprised if I was denied a kidney transplant. The fact is I cannot receive a kidney transplant. After urological surgery in 2010 a rider was put on my health insurance policy that established a kidney transplant would not be covered. People without insurance do not get organ transplants. The facts with regard to organ transplantation and disability based discrimination are simple: organs are rationed, it is unavoidable and we are not worthy. People die waiting for a life saving organ. Hospitals do the best they can to be fair. However it is impossible to ignore value judgments when allocating organs. Should a murderer be eligible? What about a person with a long history of addiction? How old is too old to be eligible? Is a certain level of cognitive ability required? The organization in charge of making these sorts decisions is the United Network for Organ Sharing (UNOS). Debate is becoming more heated with regard to exactly who is eligible for an organ as well as the circumstances under which organs are harvested (see Not Dead Yet post of January 3, 2012). Thus Rivera's heart wrenching story is merely the tip of an iceberg--that proverbial iceberg is couched in some misleading jargon and difficult to disentangle verbiage. For example, below is a statement released by the hospital:

"We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments."

The above is a wonderful statement. The only problem is it is patently false or at the very least grossly misleading. The hospital statement goes on to maintains that “all determinations of eligibility for transplantation are treated on an individual basis” using a “non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.” Again, a wonderful statement. This may be true but it is grossly misleading. One cannot leave bias and prejudice at the entrance door to hospitals nationwide. What ran through my mind when I read the hospital press release was a story I read about in the mid 1990s. Up until 1995 organ transplantation in individuals with mental retardation (MR) was regarded as a contraindication. Here i am parroting medical journal jargon. In layman's terms doctors believed post transplant care was too complex for a person with a cognitive disability to comprehend and their quality of life was less than a person with "normal" cognition. Blatant bias against people with a cognitive disability came to the forefront when Sandra Jensen, a 32 year-old woman with Down Syndrome was initially denied a heart-lung transplant in 1995.Jensen's application for a transplant was denied specifically because of her MR. Negative publicity flowed forth and advocates for people with cognitive disabilities convinced the hospital to reconsider its position. Jensen received a transplant (she died 18 months later from anti-rejection drug complications). I am afraid Children's Hospital of Philadelphia will do the same thing Stanford Medical Center did with the Jensen case--make it go away and bury it. My only hope is that Rivera's emotional post and searing outrage will not be easily forgotten. I know I will not forget the following:

"So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

No jargon here. This is the unfiltered truth. People like Rivera's daughter have limited access to organ transplants. It is obvious though unspoken that their access is far from equal. Not much has changed since the mid 1990s in my estimation. In 2003 William Bronston, a physician who advocated for Jensen formed a group of scholars and advocates called the National Work Group on Disability and Transplantation. This group conducted a survey among families that cared for a person with a cognitive disability. 80% believed that they were discriminated against regarding access to organ transplants. Powerful and deadly social forces are at work here. A few days ago my friend Stephen Kuusisto described these larger social forces. At Planet of the Blind he wrote:"What is not in doubt is the predatory and heartless social reformation well underway in the United States--a reframing of social Darwinism without apology." Rivera's story is in Kuusisto's estimation "so Dickensian I want to scream". I hope Kuusisto has a great set of lungs for I doubt his screams of protest will be heard.

Happy Anniversary

2012-01-12T07:32:00.000-08:00

Tomorrow will mark the the 34th year since I took my last step. Usually I am so busy I fail to acknowledge must less think about this date. This year is different though. I have been in a retrospective mood in recent weeks. I do not miss walking one iota. The thought of walking is so far from my mind it is akin to wishing I could go to Mars. Walking is simply not relevant to my life. My retrospection is more inwardly driven. Concern for my son and his future. Wonderment about just how unpredictable life is. Amazement that I am a middle aged man, a responsible adult. Thinking of the people I know and those who are no longer a part of my life. Were these sort of thoughts not meant for New Year's Eve? Oh well, I guess I continue my life-long pattern of doing things differently.

So I put it out to those that read my blog. What if anything should I do tomorrow to celebrate my 34th year of paralysis. And remember this is indeed a celebration. I celebrate and consider each day a gift.

Responses to Paralysis

2012-01-11T14:49:00.000-08:00

I am an avid New York Ranger fan and closely follow the team and NHL in general. My interest dates back to when I was a little boy and the big bad Boston Bruins broke my heart on a regular basis. I truly love hockey. It is a spectacular mix of athletic skill and violence. Hockey players as a group tend to be very kind people, down to earth and giving. It has always amazed me how few hockey players suffer spinal cord injuries. Of course some players have had such an injury. Most recently I have been reading about Jake Jablonski and Jenna Privette, two young hockey players in Minnesota who suffered a spinal cord injury. As often happens, there is an out pouring of support from the hockey community. Based on newspaper accounts, Jablonski will never walk again. The prognosis for Privette is a bit more optimistic.

I have been thinking a lot about newly paralyzed people in the last month. The death of Christina Symanski deeply troubled me. How I keep thinking could a paralyzed person choose to die? Is paralysis really that bad? For me the answer is an emphatic no. This Friday is also a milestone for me. January 13 will be the 34th year since I last took a step. In a retrospective mood, I have grown to feel increasingly disconnected from newly paralyzed people. My experience was radically different from what people go through today after a paralyzing injury. There were no laws to protect my civil rights 34 years ago. Wheelchair access was perceived to be a choice, charity, and obstacles abounded. I was driven largely by fear. I wanted a normal life. Normal to me meant going to college like any other 18 year old man. I was paralyzed but the most important part of my body, my brain, was working perfectly fine. And I did exactly what I set out to do. I went to college, graduate school, got married, had a child, and much later divorced. All very ordinary experiences.

This is what I have been thinking about: why not be ordinary? Why is the ordinary out of the reach of paralyzed people? Why was I able to move on without missing a beat? Many paralyzed people I know have done the same thing. I know researchers, doctors, academics, business men and women, and lawyers all of whom are ordinary, ordinary paralyzed people. This line of thought was prompted by a story on a local Minnesota NPR radio station. Ali Lozoff wrote "Navigating the Life that Follows a Spinal Cord Injury". It would be easy to critique the article as there is too much about overcoming and inspiration. But the bottom line was her admiration for her Uncle Bill. He was paralyzed as a youth and lived 45 years as a semi independent quadriplegic. What does Lozoff remember? Her Uncle was funny, complicated, determined, talented and happy. She recalled:

"For 30 years he sold pieces at art fairs, in galleries and on street corners; my cousins and I grew up working as his assistants, packaging note cards and making change. We saw the varying degrees of pity, fear and discomfort he encountered in other people every day of his extraordinary life."

Lozoff's Uncle Bill learned to paint just like Symanski. I never met Symanski or Lozoff's Uncle Bill but in a way we are all linked. I did not get this connection until I read the following words by Lozoff: "I've been trying to figure out the best way to carry on the inspiration and example of his life. One way, given the news of these recent sports injuries, is to tell Bill's story to more people. Jack Jablonski's prognosis is the same as Bill's was; his doctors say he will never walk again. Even so, the circumstances are different; the medical advances since Bill's injury are innumerable. But the life-long challenges are similar."

I am willing to ignore the reference to inspiration and have instead latched on to the phrase "the life-long challenges are similar". I would maintain those life-long challenges paralyzed people encounter are social and take many forms. Gross lack of social supports are commonplace. Unemployment is rampant. Access to health care difficult or impossible and too often results in institutionalization. Mass transportation is problematic at best. Housing scarce. These are social problems that preclude an ordinary life. For some, they are beaten down by such barriers. This worries me. In spite of 40 plus years of legislative initiatives designed to empower people with a disability newly paralyzed people are set up to fail. Sure we have laws designed to protect our rights but such laws are meaningless without social support. We as a people, American people, do not value laws of inclusion. The presence of a person with a disability still causes a social disruption--it upsets the "primal scene of sociology" as utilized by Erving Goffman. Part of me values my existence as an outsider. I know the norm will always escape me and that I have a "spoiled identity". This has not changed nor will it. Such a position is great for viewing and analyzing much social interaction. But a life spent as an outsider is not what many want--and here is where I understand others who struggle with paralysis and its social consequences. As Kermit the Frog said "its not easy being green". To this classic line I would modify to it may not be easy but it sure as hell is interesting.

Santorum Victory in Iowa: Shocked, Just shocked

2012-01-04T06:38:00.000-08:00

In November I took apart a Santorum political commercial. At the time, I did not consider him to be a viable candidate. I thought he had no chance to win the nomination. Wow, was I wrong. Santorum virtually tied the Republican caucus in Iowa last night. I could not believe it. I lay in bed this frigid morning stunned. I tried to comfort myself with the the thought he lost by a narrow margin--as in eight votes. This did not help. But my thoughts were not tied to his victory but rather a video I saw of Santorum speak about the birth of his daughter. Since he was a fringe candidate I did not want to take the time and felt he was not worth picking on. This all changed last night. Santorum's daughter was born with Trisomy 18, a condition he describes as worse than Down Syndrome, a characterzation I will not comment on. Santorum correctly notes Trisomy 18 is usually a fatal condition. Again, I will not comment on why Trisomy 18 is fatal. I will instead urge readers to do their own research and hope they keep in mind an inherent disability bias that exists in our society. So, check out the video below:

I dislike Santorum for a host of reasons. He is staunchly anti gay. His views on abortion are extreme. His fiscal policies punitive. In short, for me he is the personification of all that is wrong with conservatives, the Tea Party, Republicans, and Evangelical politicians. But I failed to realize he has a great act going here. He makes Sarah Palin look like a B level actress. The video is a sure fire tear jerker. How can you not cry and laugh. The man is engaging, he has charisma. A number of articles appeared over the Thanksgiving holiday about Santorum's so called confession. It was startling. He withheld his love from his own child. He did this to protect himself, to be the "rock" for his family. Oh, how manly! And who is to blame? Why doctors of course. They encouraged him to "let go", a nice way of saying his child would be better off dead. Worse yet in Santorum's estimation, imagine if their child had been born in a country with socialized medicine. His daughter would have surely died. And who is the savior, the hero of the story? His wife, the child's mother, who fought for a prescription for oxygen when they took their baby home from the hospital. The heroin of the story, the mother, saves her child time after time. She is the personification of motherhood.

The emotional impact of the video cannot be underestimated. I dismissed it as political theatre and was I ever wrong. This is a classic American fairy tale. It touches a primal core within American cultural beliefs. For a politician this story is a veritable gold mine. Santorum becomes bullet proof. I read a comment Santorum was not happy last night, that he had a "rough night". Why? His daughter was sick. Yes, on the biggest night of his political career he was not celebrating his victory but concerned with his daughters health. Hollywood could not write a better script.

The only problem with the Santorum story is it is patently false. Let me be very clear on this point. I do not doubt Santorum and his wife are loving and dedicated parents. Everything I have read about Santorum indicates he and his wife are wonderful parents who have home schooled their children. I consider the story false because my take on what he and his wife experienced with their daughter is radically different. So, forget the tear jerking emotion and examine what took place. Doctors told parents in the United States to let their child go. They encouraged parents to let their child die. This did not happen in a country with socialized medicine. This happened in America. It happened to powerful parents with I assume excellent health care insurance. This leads me to ask why? Why did doctors encourage parents to let the Santorum's child die? This was an institutional response enacted by highly educated doctors. Again, why? And more to the point what would happen to ordinary parents? Would they have won the fight for oxygen for their child? I doubt it very much. And what about Santorum's social policies? Forget the emotional impact the video makes. Under his budget cuts and opposition to health care reform who will be hurt? Children like his daughter. She would be hurt. People with a disability will be hurt. People with a disability will not get a good education, one they are legally entitled to. Children like his daughter will struggle to access health care. Children like his daughter future is grim. But hey, Santorum got teary eyed. Santorum cares. Santorum is a great father, his wife a heroic mother. He is a rock of stability. My hope is voters can decipher reality from emotion. The reality is grim. The emotion a smoke screen. The man is slick, his message has massive popular appeal. I was grossly wrong before. Santorum is a viable candidate. This thought scares me to death. And no, I do not want to die.

Exoskeleton: A Cranky New Year

2012-01-01T13:07:00.000-08:00

Anyone who has glanced at this blog knows I do not like the exoskeleton. About once a month I get an email from exoskeleton fans who characterize me as bitter. I don't get this--I am quite happy rather than bitter. I really like my wheelchair and think I have led and will continue to lead a rich and rewarding life. I see no use for the exoskeleton in my life and likely about 95% of those who are paralyzed. I remain troubled by the huge sums of money spent on the development of the exoskeleton to the detriment of mundane and important technology such as wheelchairs. I have often felt like a lone voice of dissent. It is as though I am the cranky sober guy at a wild party who ruins the fun for everyone else. But I am not alone. I just read a post by Mike Ervin at his blog smartasscripple. Ervin is a very funny columnist and I loved his December 20, 2011 post "Mandatory Exoskeletons".

Ervin wrote:

I’m pretty fucking depressed these days. It seems like my nightmare, dystopian vision of the future for cripples is rapidly becoming reality. And there’s nothing I can do to stop it.

"All over the world, evil, mad scientists are working with feverish, sadistic glee developing robotic exoskeletons. Check it out. Google up some exoskeletons and you’ll see what I mean. A lot of these scientists are pursuing this research in the name of using exoskeletons to enable cripples to move their limbs again. They’re making tremendous progress and it’s pretty damn scary. Because soon those super-charged exoskeletons like the one that guy flies around in in the movie “Iron Man” will be an everyday reality. And as soon as that happens, every cripple will be required by the state to have one.

When you look at it from a cold, bureaucratic bean-counter’s perspective, it makes perfect sense. Why should the public trough pay for cripples to have human assistants accompany them all day and help them do stuff when you can make those same cripples wear exoskeletons and suddenly they can move everything they couldn't move before and do stuff for themselves? The more crippled the person, the more of an exoskeleton they’ll need. Like a single amputee would just get a corresponding bionic arm or leg and they’re off to the races. But someone who’s really really crippled, like me or Christopher Reeve, if we’re supposed to do everything for ourselves we’ll have to be assigned a full-body exoskeleton like the “Iron Man” guy’s."

Acerbic. Ervin has a razor sharp wit and I am glad he too has poked fun and railed against the exoskeleton. What a waste of resources. Any facility or person that purchases a exoskeleton is on my shit list. I simply cannot respect anyone that buys into the hype of such a device. Let the popular press wax poetic about the virtues of the exoskeleton and walking but at least spare paralyzed people from such empty rhetoric. I really have too much to do. My life is too good and I am too happy. My wish for 2012 is simple--I hope the exoskeleton falls victim to the long predicted apocalypse.

Good News and a Merry Christmas to All

2011-12-24T12:08:00.000-08:00

I wish all readers a Merry Christmas. I hope Santa will be generous this year. Will be reading Twas the Night Before Christmas and the Polar Express tonight. I have great memories of reading these books to my son on Christmas Eve. The sentiments expressed in these two fine books makes me forget the commercialization of the holiday season.

Now for the good news. I received the below email from Simi Linton. If you are not familiar with her work I urge you to read her memoir and ground breaking Claiming Disability.

Justice has been served! Judge George Daniels has ruled that meaningful access to the NYC taxi system is required.

Plaintiffs Christopher Noel, Simi Linton, United Spinal, The Taxis for All Campaign, Disabled in Action brought a civil rights class action suit against The New York City Taxi and Limousine Commission, and Commissioner David Yassky. Disability Rights Advocates represented the plaintiffs.

Judge Daniels ruling calls for “meaningful access” to taxis for people who are disabled. Though he does not define precisely what that means, he writes:

“It is clear, however, that less than 2% of the city’s fleet being wheelchair accessible, resulting in the unavailability of taxi transportation and significantly increased waiting times for disabled persons who require wheelchairs, is not meaningful access. In fact, during oral argument, the TLC conceded that its regulations do not provide meaningful access to individual who require wheelchairs. It must do so.”

In a footnote, he also writes:

“…meaningful access for the disabled to public transportation services is not a utopian goal or political promise, it is a basic civil right. Title II requires immediate and full compliance.”

Isn’t this terrific! Of course, there will be more news stories on this – but for now it is important to spread the word, and rally people behind this decision. We have yet to see how "meaningful access" will be interpreted - and what the true impact will be. Whatever way it is implemented, the ruling itself will certainly have an impact on New York City, and hopefully will also have broad impact on future rulings across the U.S.

A Dangerous Love Affair with Autonomy: Symanski Life Lessons

2011-12-12T11:31:00.000-08:00

In the last week Christina Symanski, a woman I have never met has not been far from my mind. Frankly, her death has me spooked. She lived well within driving distance of my home. She shared the same civil rights that I enjoy and yet she did not believe her life had any value. She was convinced her quality of life was abysmally low and that it was not going to ever improve. She thus chose to die. I understand what drove her to die as my struggle to live an independent life was very much in question last year. I was for many months utterly dependent upon my family and friends. This dependency left me despondent. A few things saved me from sinking into the depths of despair and depression like Symanski. Even in my darkest moments I knew powerful social factors were in play. I knew these social factors led many quadriplegics such as Symanski to believe their lives lacked meaning and value. They did not want to be a burden on family or friends. They mourned lost friendships and lovers. They had no job or prospects for employment. They feared life in a nursing home. They received substandard health care due to blatant discrimination. They were confronted with economic ruin. They were socially isolated unable to leave their homes. This is a grim reality that leads to an untold number of deaths.

When I cannot get a story like Symanski’s out of my mind I think of other people with a disability that endure. By endure I do not mean endure physical deficits but rather endure a society that would lead us to believe we are better off dead. Society embraces the dignity and autonomy of those people with a disability that want to die. These people have character! These people are brave! These people are applauded! This is an old story, a deeply ingrained stereotype that is not questioned. We truly admire people with a disability that want to die and shake our collective heads in confusion by those that want to live. This mentality plays itself out in popular culture. Hollywood produces films such as Million Dollar Baby that receive accolades. I was stunned not by the film but the audience reaction. When I saw it in the theaters the audience cheered when the main character Maggie was killed. A comparable film, the Sea Inside, was released in Spain. The courts are not free from anti disability bias. Jack Kevorkian eluded being convicted even though he killed people who were disabled and not terminally ill. In 1990 a Georgia court ruled that Larry MacAfee, a quadriplegic who was not terminally ill had the right to disconnect himself from his respirator and die. The court declared MacAfee’s desire to die outweighed the states interest in preservation of life and in preventing suicide thereby upholding his right to assistance in dying. Just the year before another man, David Rivlin, also sought court intervention in his wish to die. Unlike MacAfee who did indeed die, Rivlin changed his mind. In 2010 Dan Crews expressed his desire to die. He feared life in a nursing home and wanted to be disconnected from his resperator. I could site many other examples but the common theme remains the same—people with a disability that publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest.

The stories above infuriate me. Why is it we rally around those people with a disability that want to die and yet refuse to provide the necessary social supports that would empower people with a disability to live rich, full and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly patient centered, buzz words I often heard last year. It makes me wonder though does “patient centered” allow, justify and encourage people, paralyzed people, to die? It is a euphemism that makes people in the health care system feel better? Symanski died because she found living with a disability intolerable. The unspoken corollary is she was driven to die because social supports were woefully inadequate and medical care substandard.

I remain stunned and saddened but hardly surprised by Symanski’s death. The social vortex Symanski was sucked into that led to her death has claimed the lives of many people with disabilities. Paul Longmore, a brilliant scholar and disability rights activist, wrote about what saved his life: “One thing saved me from that fate: the disability-rights movement. Our movement won my right to live independently, to work productively, to gain access to public places, to receive reasonable accommodations, and to obtain protection from discrimination. Our movement gave me the gift of a nurturing community. It offered me a positive, disability-affirming identity. It taught me pride.” How I wish Symanski could have met Paul Lngmore and others involved in the disability rights movement.

Life Paralyzed: A Final Post

2011-12-12T10:40:00.000-08:00

On Sunday December 11 a final post was put up on Life: Paralyzed by Christina Symanski. Entitled "Message to My Friends", Symanski gives those that knew her a final good bye. I urge everyone to read it. One passage struck me as particularly sad.

"Please know that my decision to leave this life behind was not made rashly, or without careful consideration and concern for the people I'm leaving behind. I have been fighting an uphill battle to live, every day since my accident. A big part of me died back on June 5, 2005 and my life was never the same. Everything has felt empty, and bittersweet. Every memory tainted with sadness, over everything that I've lost, everything I miss doing, and everything I had planned to do, and hoped to be.
My paralysis robbed me of the most basic human necessities (freedom, privacy, independence, and physical intimacy)."

I wish Symanski had learned to cope with paralysis. I do not necessarily mean cope with the very real physical struggles she faced but rather make a theoretical leap in logic. Comparing life with and without paralysis is inherently negative and misleading. There is life with paralysis and there is life without paralysis. You cannot compare the two--they are fundamentally different social experiences. Paralysis I would maintain robs a person of only one thing--equality. The civil rights of people with a disability are not valued and often violated. In fact, disability rights and civil rights are not considered by many to be comparable. I wish Symanski embraced her inalienable rights, rights that many people take for granted. Her death is a tragedy for her family and friends and an indictment on American society's failure to provide sub basic social supports for people with a disability.

I Hate the New York Times

2011-12-12T07:38:00.000-08:00

I was having a good day until i read the New York Times. Yet again the NYT has published a story, in this case a review of a TV show, that left me deeply annoyed. Here I refer to a December 11 review, " Disabled Host, With the Emphasis on Able" by Jon Caramanica. A few will know Zach Anner, a man with cerebral palsy, who won a reality competition (Your Own Show: Oprah's Search for the Next TV Star) to host a program on the Oprah Winfrey Network. His show, Rollin with Zach, will air tonight. I doubt I will watch the show. But it is the review rather than his show that has me deeply annoyed. The NYT characterized Anner as "witty and charming and mildly zany. And also disabled". Why is that phrase, "and also disabled", included? In my opinion it is based on the assumption that people with a disability cannot be witty, charming and zany. Surely we people with a disability are miserable and morose. Another unfortunate passage sates that: "The inspiration in Mr. Anner’s story is implicit. Unlike most travel shows, on which the hosts feign omnipotence and fearlessness, “Rollin’ With Zach” often reveals Mr. Anner adjusting for his disability. Concern for his well-being is embedded into the show, as is the sense that things will not always go smoothly."

When I read these lines I wanted to scream. Why don't things go smoothly when Anner travels? The answer is simple: in spite of the law mass transportation remains either inaccessible or problematic for people with a disability. The reason for this is not because Anner cannot adjust for his disability but rather society fails to be inclusive to people with a disability. Problems abound because people with a disability are not valued. Equal access does not exist within the travel industry. Perhaps this is the reason Anner is not "fearless". Like many people with a disability he knows all too well that when traveling barriers to inclusion are common place. As for "concern embedded" into the show, I find this demeaning. Why should this concern exist? We people with a disability are perceived to be incompetent. Thus the all powerful bipedal people will out of the goodness of their heart protect the well being of people with a disability. This logic is not just wrong but provided the theoretical justification for excluding people with a disability for decades. Paralyzed people cannot fly in a plane, they are a safety hazard. People with a disability cannot attend public school, they are a fire hazard. Exclusion was not seen as a form of discrimination but rather done for the "well being" of people with a disability. Such a sentiment still exists today in spite of the fact the ADA was passed 20 years ago.

One last example should suffice: "Both initial episodes conclude with Mr. Anner attempting a water activity, surfing and then water-skiing, which he succeeds at, with some hitches. On a chair-swing ride at Navy Pier in Chicago the look of ecstasy on his face at the freedom of movement is genuine." A few things are assumed. Water sports and sports in general are beyond the ability of most people with a disability. Sports are for fit people, those without a disability. Implied is the refusal to perceive adaptive sports, in this case a water activity, as equally enjoyable. Why is "ecstasy" on Anner's face? Simple, disability is inherently bad and restricting. Disability is always compared to normal, meaning bipedal movement. Surely Anner must wish he was normal, not disabled. This is evident by the "freedom of movement". Of course the reverse is a lack of freedom and movement people with a disability experience. Easily ignored is that it is not the lack of movement that prevents freedom but socially constructed barriers. For instance I can ski but I cannot ski at all resorts because basic wheelchair access is absent.

The review incorrectly concludes that Anner is a "role model". Who exactly is he a role model for? People with a disability. I can assure you Anner is not my idea of a role model. My role models were people like Ed Roberts and Paul Longmore. These men questioned authority, bucked the system and won. They did not win for themselves but for all people with a disability. Roberts and Longmore made this country a better place for people with a disability. This I admire far more than any television program, especially one on the Oprah Winfrey Network known for fluffy self help pablum.

Mourning for Christina Symanski: Better Off Dead?

2011-12-09T09:19:00.000-08:00

Last week I came across a blog entitled “Life; Paralyzed” written by Christina Symanski. The blog was devoted to her “thoughts & day to day struggles living with paralysis” and “current information related to spinal cord injury”. Symanski started her blog in September 2009 and her last entry was posted on September 13, 2011. Since I discovered her blog I have read each and every entry several times. I found much of what she wrote eloquent even though I considered her views on spinal cord injury morbidly depressing. I was hooked by her passion and the raw way she expressed her emotional and physical struggles. In fact, I stayed up most of the night reading her blog from beginning to end. In the morning I googled her name and found more of her writing, paintings, videos posted on various sites, and to my great shock I learned she died two days before I discovered her writing. I was dumbfounded by her death. I still am shocked. I mourn for a woman I never met. My heart goes out to her family.

Not once in the last week has Symanski been far from my mind. Every morning I google her name in the hope of finding an obituary. Every morning I am disappointed. No mention of her death has appeared. I do not know why Symanski’s works have touched me so deeply. Perhaps her words struck a chord because they are so radically different from mine. Perhaps it is because she wrote so well. Maybe it is more basic; I am appalled by her death and morbid views of paralysis. Even more disturbing to me, she did not die of natural causes. She wrote extensively and with sincerity about her desire to die, to end her suffering. She accomplished this goal and in the manner she wrote about. Based on threads at the Care Cure Community, she refused all food and hydration. According to a woman that identified herself as Christina’ s best friend “Christina passed away yesterday, December 1st, exactly two months from when she started refusing food, water, and medical treatment. She spent most of those months at home, aside from a week in a hospice facility to get her palliative meds sorted out. Everything didn't play out quite as peacefully as she imagined it would, and she was conscious up until a few days ago, but her final moments were calm and comfortable and she passed on in her own home with her family at her side.”

It is one thing to express a desire to die, to essentially starve and dehydrate one’s self, and another to follow through. Symanski’s writings illustrate her interest in a cure for spinal cord injury, struggle coping with a high-level spinal cord injury that caused a host of medical complications, foremost among them autonomic dysreflexia, and her increasing despair. In 2009 her entries largely concerned a cure for paralysis. Symanski was injured in 2005, spent a long time in critical care hospitals and was for more than a year the resident of a nursing home. She escaped the nursing home, an almost impossible feat, lived in her own apartment and was remarkably productive. She was interviewed for newspaper articles and talked at length about her artwork. She posted three well produced but maudlin videos on line about life with a high-level spinal cord injury. A cursory reading of Symanski’s posts indicate that as 2010 progressed her entries became increasingly dark. Her autonomic dysreflexia continued unabated and the solutions suggested were unacceptable.

Three posts this year were particularly dark. Here I refer to “Meeting with Fr. Doug”, May 9, 2011; “How to Die in Oregon”, May 31; “Why I think I should be Allowed to Die with Dignity” May 31, 2011. All three posts indicate she was actively seeking a physician that would declare her terminally ill and I hence be eligible for hospice care. She consulted a lawyer to discuss the legal ramifications of her desire to die. She also contacted a local palliative care consultant to discuss all her options. Just as she was driven to search a cure for spinal cord injury she was equally driven to die. This is deeply disturbing to me at multiple levels foremost among them is that she convinced a doctor, lawyer, psychiatrist, palliative care specialist and her family to acquiesce to her wishes. This is well outside of the norm and I wonder about the ethics and legality of her actions. It also reveals an unspoken truth. When a person with a disability expresses a desire to die and engages in an all out effort to die they are applauded and encouraged by others—others without a disability. Symanski’s blog is littered with encouragement and supportive words. Her express desire to die in face of a debilitating condition reminded me of a lauded opinion piece I read in the New York Times this summer. “The Good Short Life” by Dudley Clendinen was an eloquent expression of his desire to die before ALS robbed him of his dignity. Society loves people like Symanski and Clendinen who are stately, dignified and eloquent. Their desire to die is perceived to be noble. Here is the problem. No one asks why, why do they want to die? Symanski feared being forced back into a nursing home. Clendinen questioned why he should spend $14,000 a year on a medication that will extend his life a few months.

In choosing to die people like Symanski and Clendinen reinforce an ugly truth about how people perceive disability--that is one is better off dead than disabled. Of course few people will openly admit this. Jackie Leach Scully identifies this as nonverbalized bias “disablism”. She wrote “ People who are nonconsciously or unconsciously disablist do not recognize themselves as in any way discriminatory; their disablism is often unintentional, and persists through unexamined, lingering cultural stereotypes about disabled lives”. This made me wonder what would have happened to Symanski if she were not paralyzed and instead had a more socially acceptable chronic disease. Would she have been allowed to dehydrate and starve herself to death? Not a chance. It is only because she had a severe disability that her desire to die was understandable, acceptable to others.

No Faith in My Fellow Human Beings

2011-12-07T10:28:00.000-08:00

Last week I had a highly rewarding exchange of emails with a woman who is detailing her end of life experience at thedrsays.org. She is experiencing congestive heart failure and wants to die with dignity and in peace. We started our exchange as I left a cranky comment about her positive response to the Dr Oz I railed against on assisted suicide. Despite our different views we showed each other a great deal of respect that is all too often lacking when end of life issues are discussed. She is facing some very difficult decisions in the very near future. I wish her and her family well. I also urge you to read her work. It is important in large part because she is a living example that modern medical care and medical technology have created impossible ethical conundrums. I do not envy the decisions she and her family will be making. Thankfully it seems she has an excellent rapport with her physician and support of a loving family. As a veteran I am pleased to know she has received appropriate supports in terms of health insurance.

There is no proverbial but coming in this post. Rather an observation: many people who are nearing the end of their life know little or nothing about disability. Disability simply has never touched their lives or members of their family. Disability is an abstract concept and disability rights a foreign idea. But the woman I exchanged email with does have some experience. In her response to me she concluded by noting in "Dr. Oz, Montel Williams and the Bad Cripple" "my mother had polio as a child and is truly crippled by it. she has 3 daughters and growing up with her it never occurred to me that she would be better off if she took her own life. that is one reason I don’t worry about the slippery slope. we are smart enough to make the distinction between someone with a debilitating terminal illness and someone who is disabled. maybe i just have more faith in my fellow human beings."

In these few words a great divide is revealed. Those that favor the right to die with dignity are capable of seeing that those with a disability are not the same as those with a terminal condition. As this woman notes she has faith in her fellow human beings and based upon this faith is not afraid of the slippery slope. I love this sentiment. I do not share her faith or optimism in others. I do not trust the medical establishment. By medical establishment I refer to the medical industrial complex that dictates care in this country. I am even less inclined to trust my fellow man, the ordinary person, like the people on the Dr. Oz show that appeared to be happy to let anyone suffering to end their life with the full support of the medical establishment. In the case of the Dr. Oz Show anyone with a disability was clearly suffering, had little dignity, and deserved to die. The emotions of the show not the few facts put in evidence scared me. It scared me because as much as doctors would like to contend medical care is a hard science there is as much art as there is science in medical care. Culture I assure you rears its ugly head in every aspect of medical care and medical technology. By extension, culture is a significant variable in the way we die. We do not discuss end of life care--we never have and at this point given the very real ethical issues we now encounter at the end of life we as Americans desperately need to discuss the matter. We need a national debate. It is for this reason I found my exchange of emails so satisfying. Our respective views were questioned and subsequently more clearly articulated. We both learned much from a person we had a serious disagreement with.

In thinking about my email exchange and in particular the passage I quoted, I was reminded of one of my favorite books in disability studies, Make Them Go Away by Mary Johnson. In her book Johnson seeks to answer a seemingly simple question: Why is there so little support for disability rights? Well, most people do not equate equal rights with disability rights and few liberal rights organizations support the disability rights movement. The net result is many people do not think people with a disability are a minority group subject to discrimination. I find this line of thought baffling. Prejudice is rampant and it takes much more than 40 years of law making to change our deeply ingrained beliefs. When I bring up the issue of disability rights and closely tie it it other civil rights movements the most common reaction is disbelief. More than a few people have rolled their eyes and some simply say I am full of bull shit. In response I will acknowledge no one wakes up in the morning and thinks I will discriminate against a person with a disability today. But that does not mean prejudice does not exist. And this is why I do not trust my fellow human beings. The prejudice I encounter as a person with a disability is deeply ingrained. It is ever present in the form of a lack of social supports, inaccessible housing and mass transportation, employment, poverty and the list goes on and on. Think of one word--disenfranchised. When all these socially constructed barriers are eliminated I will have faith in my fellow humans. For now, I am not swayed nor do I feel equal. This jaundiced view is not nearly as nice as the sentiments my email friend expressed but reflect the gritty reality I have experienced as a person with a disability.

Waking Man Circa 2012: Exoskeletons By Extension

2011-12-01T12:01:00.000-08:00

I find technology magazines and technology geeks to be devoid of any social awareness. I thus avoid such publications with one exception--i like to read about how technology people envision the future. Such predictions are almost always wrong--spectacularly wrong. Think the Jetsons wrong. My son sent me a link to a typical envisioning the future article. I was not enthused but he always has a good reason for sending an article to me. I am interested in not only the content of any link he sends but wonder what inspired him to send it in the first place. As a parent I am interested in knowing how his mind is working as a college student. As lunch time approached today I printed out the link, "23 Incredible New Technologies You'll See by 2021". Imagine my chagrin to read that paralyzed people will be walking by 2012--well sort of walking. This claim is grossly wrong but that is not the point. I now get why there is no chance my favorite invention to make fun of, the exoskeleton, will not go away.

Under the heading The Paralyzed Will Walk there is the proverbial but. The paralyzed will be walking but "not in the way that you'd imagine. Using a machine-brain interface, researchers are making it possible for otherwise paralyzed humans to control neuroprostheses--essentially mechanical limbs that that responds to human thought--allowing them to walk and regain bodily control". A photograph is even included of a man, muscular arms crossed with a skull cap on and hundreds of wires running down his back. Looks to me like dread locks gone wrong! It also sounds a lot like a high end exoskeleton. Deep pockets have been invested in the exoskeleton. What I call the cure industry has embraced this costly idea that has dubious value at best. It made me think how lucky I was to be paralyzed 33 years ago. Modern rehabilitation was being formulated in the 1970s and 1980s and patient care came first. Today things are radically different. Present day rehabilitation is both terrible and wonderful. The truly terrible part is the cure industry that sells false hope and preys upon the newly paralyzed who are fixated on walking. Don't get me wrong, cure for paralysis is a worthy goal as we humans were designed to be bipedal. However a modest bit of research shows we are a very long way from anything that resembles a cure for paralysis. For a practical person such as myself, that means moving on with life using a wonderful alternate means of locomotion--the wheelchair. A spectacular invention that empowers millions of people. In part this is why I hate the idea of the exoskeleton: it glorifies walking as the one and only means of locomotion. This sends a bad message to paralyzed people. Essentially walking is good, wheelchairs are bad. Let's look at it this way and see the folly. Imagine are a paraplegic such as myself. I have the following choice. To start my day I can transfer from bed to wheelchair and go. Time involved less than 30 seconds. Alternatively I can put on a skull cap with dozens of wires and then strap over half my body into "neuroprotheses". Call me crazy but this does not sound like it is an efficient use of time or movement. And here is where culture rears its head. We Americans value technology--the more complex and involved the better. Thus we will dump hundreds of millions of dollars into the exoskeleton but categorically refuse to provide the most basic support services for people with a disability to lead an ordinary life. This makes no sense and many paralyzed people suffer as a result. Needless social isolation and rampant unemployment is the norm. How I wonder can this be tolerated?

I would like to identify something positive about the development of the exoskeleton but have utterly failed. However, there is no doubt in my mind researchers will continue to spend vast amounts of money into the development of the exoskeleton. The reason for this was made clear in the article. Apparently "the same systems are also being developed for the military, which one can only assume means this project won't flounder due to a lack of funding". Great, just great. The real market for the exoskeleton is not paralyzed people but rather its military development. I guess we need the exoskeleton so military men and women can carry hundreds of pounds of gear. Given how insidious the military industrial complex has been weaved into the fabric of American society since World War II the exoskeleton will continue to be well funded. A cash cow even. At the same time states nation wide will cut services for people with a disability with popular legislative support. What a world.

Assisted Suicide: Never Enough

2011-11-28T09:44:00.000-08:00

I do not trust groups such as Compassion and Choices who vigorously lobby for assisted suicide legislation. There is no question Compassion and Choices has deep pockets, is media savvy, and an effective lobby. The message is simple--they do not want people to die in pain and great suffering. It is hard to argue this point. Too many Americans die badly. However, I contend we do not need assisted suicide legislation but rather a vibrant hospice movement. While we have many fine hospices, Americans believe hospice care is tantamount to giving up. The result is people die badly and enter hospice care far too late. This only fuels the simplistic message Compassion and Choices advocates--even with hospice care we die badly. We must do better! In my estimation this line of thought is not only misleading but dangerous. Why do I feel this way?

First, all those that advocate for assisted suicide legislation are asking the wrong question. At issue is not how we die but rather how we live. I would posit we should seek to empower those who are at risk populations--the elderly, disabled, and terminally ill. How can we insure families with an elderly parent that has dementia receive adequate support? How can we insure families do not incur great debt caring for a loved one that is terminally ill? What can we learn from people that are near the end of their life? I may appear naive in posing these questions but I am not. I went through the medical mill as a child and recently as an adult. There is no doubt in my mind that to date we Americans have consistently refused to engage in a serious discussion about end of life issues. This refusal has hurt far too many people and spawned zealots such as the deceased Jack Kevorkian, a deeply polarizing figure. Nuanced debate is totally absent. We have two sides, those for and those against assisted suicide. If I have learned anything in life, it is that we do not often get to choose the way we die. When we let others make this decision for us we have entered into dangerous territory. Any discussion of quality of life is subjective in the extreme. Long ago when I was paralyzed my level of injury was considered very high (T-3). Paraplegics such as myself abounded but I met virtually no quadriplegics. One night I asked why there were so few quadriplegics. I was told think about it. I did and remained puzzled. High level injuries, above C-8, were not often treated. The reasoning was simple--life as a quadriplegic was not worth living. Fast forward to the present--all high level spinal cord injuries are treated. The decision making has far less to do with medical facts but American cultural perceptions. This was true in 1978 and it remains true in 20011. The presence of a disability is stigmatizing. For some it is a fate worse than death.

Second, assisted suicide advocates are never satisfied. They use the terminally ill to demonstrate their compassion but are perpetually pushing for wider use. Writing about assisted suicide in the state of Washington in the Olympian on November 16, Brian Faller argued it was time to think about expanding the legislation. He wrote "to improve the chances of passage, the Death with Dignity Act was written to apply only to the choices of the terminally ill who are competent at the time of their death.
This raises the question whether, if the act continues to work as intended, we should extend the choice of voluntary euthanasia to:
• Persons who are not terminally ill but suffering a severely debilitating medical condition they judge to be unbearable.
• Persons who are not competent at the time of their death but who previously made a competent choice of euthanasia as evidenced through a special type of advance directive." If we expand legislation as suggested by Faller I would be eligible to take advantage of assisted suicide. This scare me to the very core. It truly inspires fear. Even this is not as disturbing as what is going on in the Netherlands where assisted suicide has been legal for a decade. Euthanasia advocates are lobbying for mobile euthanasia teams who will "teat" the elderly and disable in their own homes. The Dutch Medical Association has approved euthanasia for people with dementia. This is particularly worrisome because in the near future it will be possible to test people for Alzheimer's disease before symptoms develop. That is people who are clear and lucid will be told they are going to develop dementia. What is the point of such a test when no cure exists? Researchers and clinicians say such testing will help families prepare for the future. Will that future include assisted suicide? Undoubtedly.

Further examples abound but suffice it to say once legalized assisted suicide will be used in greater and greater numbers. This is the case in Washington and Oregon as well as the Netherlands. So don't be fooled by the seductive and sentimental tactics espoused by advocates for assisted suicide. I saw this first hand at the Dr. Oz Show. It was shockingly effective, chilling really how he whipped the audience up into a frenzy of approval. I implore readers to think rationally about assisted suicide. It is in your best interests as well as mine.

Feeling Smart and Powerful

2011-11-23T07:36:00.000-08:00

My power went out early this morning. My heart sank for a second and then I felt smart. I called my brother and within 40 minutes he had my fancy generator going. The clinitron bed sprang back to life. A couple of lights are on, phone is charged and I am back in business. No worries here. What a relief. In fact I am glad the power is out. I wondered if the costly generator would be akin to carrying an umbrella all day, a sure thing it will not rain. So my power is out but I am far from powerless. Better yet, my son is coming home this afternoon for Thanksgiving. It will be wonderful to see him. My fridge is stocked up with his favorite foods. Life is so funny. When I was his age I thought my folks were so strange the way they took delight in feeding me. Now I feel the same way and have no doubt my son thinks I am odd. Ah, the cycles of life.

Lives Worth Living

2011-11-21T09:45:00.000-08:00

In one word, wow! I finally got to see Lives Worth Living the documentary about disability rights broadcast on PBS. This is an outstanding film for those intimately familiar with disability rights and those that have never been exposed to this largely disregarded part of American history. All the key figures I hoped to see were included in the film--my personal hero Ed Roberts, Judy Heumann, Fred Fay, Bob Kafka, Tom Harken and many others. I am not the least bit ashamed to say I got teary eyed a number of times. This was my history, our history on film. I carefully observed not only the important protests from the 1970s but the evolution of wheelchair technology. Yes, I saw the old clunkers Everest and Jennings manufactured for decades and compared them with modern day wheelchairs. Amazing how once the corporate monopoly Everest and Jennings exploited ended around 1980 wheelchair technology advanced by leaps and bounds. This is why I liked the film so much--it can be viewed by a person such as myself who has studied disability history and find it greatly rewarding. Yet at the same time a person with no knowledge can be introduced to the subject and come away with a basic foundation in disability rights.

All the reviews I have read are uniformly positive. Only one long review has been published to date. I am sure more are in the works. The sole long review I read, "The Promised Land Will Be Wheelchair Accessible", by Jeff Shannon was excellent. Shannon, a quad since 1978, the same year I was paralyzed, weaves in a larger discussion of disability rights into the review. I met Shannon this summer and we had a long lunch on the Seattle Waterfront. We have had similar careers, me in anthropology, Shannon in film reviewing. We have our differences but there is mutual agreement on the importance of disability rights. Given this, I was not surprised that both of us got choked up when I KIng Jordan spoke about the afternoon the ADA was signed. Jordan described the definition of the American Sign Language symbol used to express a long awaited achievement, the word "Pah". I did not know this word but as Jordan describes it and signs "Pah" I was overcome with emotion. I really am equal to others. What a feeling. I just wish the reality matched the feeling.

I do have one significant problem with the film. While righteous indignation is palatable throughout the film, I worry the uplifting end could be misleading. The culmination of the film is clearly the passage of the ADA. There is a sense among those with unfamiliar with disability that the ADA solved all our problems. Yes, Judy Heumann notes that oppression and problems still exist but that is not what many will remember. I can readily envision this film being widely show in high-schools where students will think well we solved that problem--discrimination--with the ADA. Meanwhile in the same building is a student with a disability that is segregated to a resource room and transported to school on a short so called special bus. This is discrimination and segregation in a socially sanitized and accepted form no different than what tok place before the ADA was signed into law.

Republicans Emotional Use of Disability

2011-11-16T09:23:00.000-08:00

http://youtu.be/y_O_6ycisIE

In the last presidential election when Sarah Palin used her son Trig to establish herself as an expert on disability rights I was appalled. Over the last two months a few people have sent me emails about Rick Santorum, a deeply religious right wing Republican. Why, people have asked, am I not blasting him? He is after all following Palin's disability handbook. That is Santorum is using his daughter who has Trisomy 18 as a emotional prop to appeal to right to lifers, those opposed to health care reform, and so called traditional values Republicans love to talk about. I simply do not take Santorum seriously but when someone sent me the link to the ad on You Tube above I had to write something. Watch this long political ad without either getting angry or sick and you have a stronger stomach than I do.

Based on the reviews posted on You Tube this ad is exceptionally successful. People love it! Sadly this does not surprise me one bit. Emotional arguments devoid of any factual basis about disability always touch the hearts of people who know nothing about disability. And the skeptic in me would estimate that means 90% of the country will fall for the rhetoric in the political ad. This makes me crazy as a quick google search, "disability rights" will reveal a wealth of information. This information will undermine the emotional response the Santorum ad was designed to prompt. Facts people. Facts and politics. Here is a fact Santorum does not want you to think about nor do any other republicans--disability is a valid political issue. Disability has a central place when it comes to health reform, aging baby boomers, and laws such as the ADA that was gutted by conservative justices put in place by former President Bush.

Forget the sentiment, ignore the tear jerking. Lines such as "Some people describe people like Bella as ‘disabled children, I look at her and I look at the joy, the simplicity, the love she emits, and it’s clear to that we are the disabled ones, not her.” People with a disability do not need pretty words and sentiment. People with a disability need equal rights. People with a disability need equal access to education. We need politicians to support IDEA so children like Santorum's daughter will get a good education. But Santorum plans on cutting spending on education. Do I really need to tell readers exactly who will be hurt the most? Santorum is also against the Affordable Care Act. He even goes as far as to suggest people with a disability will suffer and die if it is enacted. He conveniently leaves out the fact the vast majority of disability rights groups support the ACA. The fact is health care reform will help people with disabilities. Perhaps as a Senator he is unaware that access to insurance for people with a disability is difficult at best and financial ruin common. And lest readers think I am simply spewing out anti Republican rhetoric, I am not. I have no problem with conservative politicians. I do however have a huge issue with the way conservative Republicans skew facts and question their ethics since 9/11. We thus have people like Michelle Bachman who thinks water boarding led to the discovery of real facts. So what if it did? The American government is not supposed to sanction much less torture any human being. We are not supposed to detain people without cause or legal representation but we do. We are supposed to be allowed to dissent and have freedom of speech. But when that dissent becomes inconvenient we send in the police. Here I am referring to Mayor Bloomberg who sanctioned the police raid on Occupy Wall Street. That raid took place at 1AM, the media was barred from the area, the park was declared a no fly zone and no one really knows what the police did evicting protesters. Does this sound like democracy? Not to me as I find dissent our patriotic duty.

Let me reiterate. The above is not a rant specifically against the Republican Party or Santorum. He is just the latest conservative politician to use his child with a disability as a political prop. Some of these thoughts were prompted by Steven Kuusisto with whom I will end this post. He wrote: "The more I think about the GOP the more I wonder if ever again the best in our nature will clarify for truly decent conservative people. I happen to know many such folks. That well meaning principles have been sacrificed at the alter of theocratic extremism is terrible news for our republic. This is still a nation of good people. We deserve a good Republican party. Plenty will say I'm sniffing airplane glue." I don't think Kuusisto is sniffing glue. I am surrounded by such conservatives where I live in the wealthy suburbs of New York City. Good people largely even if I do not like their politics.

Four Walls Creeping In

2011-11-14T12:49:00.000-08:00

It has been two weeks since I found the blister on my hip caused in large part to the Halloween storm and no electricity for almost a week. I was at wound care today. The wound is better, not much but better. I am still stuck in bed and will be for a while. This is very hard. I am overwhelmingly sad. I am coming to terms with the fact I will most likely not be healed until Christmas. Even then my skin will not be up to withstand the rigors of skiing. I had dreamed of skiing out West this winter. Looks like that is a pipe dream now. And in my grim mood I wonder if I will ever ski again. I wonder if I will ever resume a normal life. It is hard to make plans knowing one small mistake can leave me bed bound for months. At least I can function. I am not in a nursing home. I do not need my family to stay in my house and care for me. But life seems very restricted. Yes, the four walls of my bedroom are closing in and I am not happy.

Halloween Storm: Great Havoc

2011-11-08T10:02:00.000-08:00

This is the pretty view of my property after the Halloween Storm. Never in my life have I seen over a foot of snow fall in October. My pumpkin never got carved, something I love to do, and I feel bad for the local kids. No trick or treating took place. The not so pretty pictures involve downed power lines on my road, destroyed trees on my property, limbs and branches everywhere. The road I live on looks like a bomb hit it for days. Clean up is going to take a while, months Frankly I did not believe the forecast and was not prepared. We never get significant accumulations of snow in October. Well, this was a historic first. A record setting storm far worse than what Hurricane Irene wrought. I was without power for almost six days. I held fast for over two days until real disaster struck. One cold powerless night I went to sleep in my son's bed and buried myself under a pile of blankets to stay warm. I even wore a wool hat to bed. When I woke up I had a bad blister on my original wound. I abandoned my home, got a guest room where my mother lives, and went to wound care. I have a blister. For anyone else this is no big deal. For me this means weeks in bed again.

Some good has come out of this. Thanks to my brother I now have a working generator. It will power my bed for about 12 hours before it needs to be refueled. I learned never ever to use heavy blankets for warmth. I got to spend a few days with my mother. She is a cool old lady as my son would say. Thanks to her generosity my skin did not evolve into a huge problem. When power came back on I had the bed company service it and move it into my bedroom. Yes, I am out of my living room. I am now like many other Americans who actually sleep in their bedrooms. This enabled me to clean my living room and move all the furniture around. My living room has never looked so good or clean.

I lost an entire week due to the storm. Nothing got done as my access is the internet was limited to my phone. I missed out on a few important issues I wanted to write about--an anti accessible taxi editorial in the NY Daily News, more on the Dr. OZ show, I missed attending an anti Euthanasia conference, and more. So yes, here I am stuck in bed but my spirits are not down. After months in bed a few weeks to endure will be a piece of cake. I am not worried about ski season or teaching next semester. The only being that is having trouble adjusting is my black lab Kate. She loved being where my mother lives. She was a star, all the old folks petted her and shared lab stories. She was thrilled by the attention. And now she is confused. She slept in the living room for a year and is now back to her crate in my bedroom. She is unsure where to sleep. But we are simply happy to be home and have power. Life is pretty basic.

Powerless

2011-11-02T12:34:00.000-07:00

I lost power Saturday afternoon. After three days I gave up keeping my place warm. Too much work. The fish in my aquarium all dead. My complaint list is long and I am not a happy camper. Worse yet my skin broke down. Saw MD, not a real problem but it could become one in a heartbeat. Very worried and in desperate need of power that makes my life go. The storm on Saturday that brought over a foot of snow at my house caused far more damage than hurricane Irene. At best, I hope to get power back Friday. Next week is more likely. I will post some pictures when power comes back. My property was hit pretty hard, likely lost my beloved American chest nut trees. Never thought I would say this after last year but I miss my clinitron bed and living room.

Lives Worth Living

2011-10-26T07:10:00.000-07:00

Thursday night, Lives Worth Living, a documentary film about the history of the disability rights movement will be broadcast by PBS. The advance reviews have been outstanding. The film maker, Eric Neudel, has received many awards. Beth Haller, author of Representing Disability and an expert on the mass media, was "completely wowed by this powerful documentary that packs 50 years of disability rights history into 54 minutes." I will not be able to see the film Thursday but I am sure PBS will rebroadcast it. I urge all those with even a passing interest in disability rights and history to watch the film. I for one am deeply moved when I see disability activists from the 1960s and 1970s. For me it is like looking back in time. I get to see the old hair styles, clothes and terrible wheelchairs produced by Everest and Jennings. If this sort of imagery is interesting check out the Disability Rights Education Defense Fund You Tube videos on line.

More on Dr. Oz and Assisted Suicide

2011-10-25T09:23:00.000-07:00

Stephen Drake at Not Dead Yet has put up another post about the Dr. Oz show. He refers to me and provides a link to my post about the Dr. Oz show. For this I am very grateful. It is very important that people read what Stephen has to say. He has been on the front lines so to speak for quite some time and Not Dead Yet is needed now more than ever. The Dr. Oz show highlighted this in spectacular fashion. Drake and Diane Coleman are forward thinkers whose voice needs to be heard. For instance, Drake anticipated the Dr. Oz show was going to be hopelessly biased in favor of assisted suicide. This has not been a good week or two for disability rights. We have the Dr. Oz show pushing assisted suicide and Mayor Bloomberg spouting off about the "dangers" of having accessible NYC taxis.

In an effort to reaffirm the rights of people with a disability and for the skeptics out there who may think I was exaggerating what I wrote about the Dr. Oz show, below is part of what Drake posted at Not Dead Yet. I had not met Danny Robert and Nadina LaSpina before last week and was duly impressed. I think their take reinforces what I wrote and exactly why Not Dead Yet is needed. I urge all to read the final paragraph very closely.

Bushwhacked in the Land of Oz

Danny Robert & Nadina LaSpina

Wednesday was a dark and rainy windy day here in the Big Apple. We were invited to be part of a taping for the Dr. Oz Show on the topic of assisted suicide. Our car service pick up was scheduled for 7:15 AM. We couldn't find the van which was parked far from our door and got soaked but we got to the accessible entrance to 30 Rock before 8:00.

Julie Maury, Bill Peace, Hope Derogatis and Ari Ne'eman, all people with disabilities and disability rights advocates, were already there. We had each been interviewed by producers prior to being invited to appear on the show. We were directed to a large elevator to the sixth floor where we all showed our IDs and were given our tickets. We were received very cordially, with big bright smiles, by the production staff who all looked like high school cheerleaders. “Are you excited to be on the show?” one of them asked. “As much as I am when I go to the dentist,” Nadina answered.

Though we had never seen the Dr. Oz show, we expected it to be low quality, shallow and (especially having read Steve's blog) extremely biased. But we had no idea of how great the bias and how blatant the hostility that awaited us in Oz's studio would be.

We were brought back to the elevator and then escorted into a small “holding room." With some difficulty, we all squeezed in. Dr. Byock, a palliative care doctor who opposes assisted suicide, stopped in to introduce himself and we all pleasantly shook hands. He was scheduled to be on the small expert panel, and we were scheduled to be in the pro-or-con segment of the audience.

We talked among ourselves, deciding who would make which point. Very naively, we thought we would all get a chance to speak. Then a young man, accompanied by someone with a video camera, entered and introduced himself as Greg. He said he was a producer and asked us to articulate our opposition to physician assisted suicide. Each of us had something to say and he listened and asked questions. He explained that in the first segment of the show, Dr.Oz would bring out his special guest, Montel Williams, who would explain why he is in favor of assisted suicide, then Dr. Ablow would argue against, and then a woman with ALS would be brought out. Greg asked that we not interrupt or heckle, and that we would get a chance to speak after the woman with ALS.

Montel gave a dramatic performance, grabbing his legs from time to time while he spoke, his face contorted in pain. He said he wants to have a way out when the pain gets unbearable and he wants to die with dignity. Dr. Ablow gave some good arguments, saying "I would never legally allow physicians to decide who should live and who should die... physician assisted suicide is a slippery slope..." But right from the start it was very obvious that Dr. Oz and most of his audience were not interested in hearing any arguments against.

Then Dr. Oz introduced Dana, an African American woman in her late 40s or early 50s with ALS. Her attendant rolled her to a spot right in front of the panel. She sat in a manual chair, somewhat reclined, wearing a ventilator mask. A video played on the big screens, showing Dana before tragedy hit, healthy, strong, athletic... (very exploitative). Then the ventilator mask came off (the ventilator alarmed briefly) and Dana began to speak. She said she had been living with the progression of ALS for 8 years and she was tired. She hated having to depend on others for her care and she couldn't take it anymore. She said she was depressed, lonely, had no friends left and she wanted to die. Nadina and I looked at each other and said “that's why she wants to die.” Nadina quickly jotted a note in preparation for her comments.

As Dana spoke, the sighs and the sniffles from the audience kept getting louder. The cheerleaders went around with boxes of tissues, the bright smiles on their young faces now replaced by mournful expressions.

Dr. Oz asked Dana's son how it felt to live with his mom. He said it was sad and that, though he didn't really want her to die, he also didn't want her to suffer anymore. Dana's daughter said: "It's heart-breaking, unbearable to watch her suffer. She's had enough." Dana's sister, who has her health care proxy, reiterated: "She can't take it anymore. She's suffered enough." It was obvious to us (but I guess to no one else) that the family had “had enough.”

Greg had promised that after the break, we would have a chance to speak. After we heard Dana, we decided that I should go first, since my physical condition is, outwardly, very similar to hers, and my need for a ventilator is actually greater than hers. So I told my story, including my MS diagnoses, the break up of my marriage, how bleak the future appeared to me then, and the resulting near-suicidal depression. I said how glad I was that no lethal prescription was available for me then. I said that meeting disabled people and becoming part of an activist community got me out of the depression. That I fell in love with Nadina 18 years ago and, in spite of my losing function and at times becoming depressed, I lead a full, rich and very happy life.

Nadina picked up here and said that losing function often is accompanied by temporary depression, and that having available a lethal prescription would be very dangerous for someone with a progressive disability. Then she started saying that assisted suicide was usually presented as a “choice for the terminally ill,” but here we were talking about people (Montel, Dana) who were not terminally ill but had disabilities. Dr. Oz didn't let her continue. He quickly walked away with the mike, while Nadina yelled “I'm not finished.”

During the break, Nadina complained to Dr. Oz that she had not been allowed to speak. "I'll come back to you," he said. But he never did.

In the next segment Dr. Oz brought on two more panel guests, Dr. Ira Byock and Barbara Coombs Lee from Compassion and Choices. Dr. Byock was very good, stating there was no need for assisted suicide given the availability of good palliative care. He pointed out to Dana that she could refuse treatment. He did so in a very gentle way. He asked her: “do you want to tell your doctors, maybe next time you're hospitalized with pneumonia, that you'd rather not have them do anything, let nature take its course?” (Maybe not his exact words, but something like that). Dana did not answer. Dr. Oz quickly stepped in. “Let her answer” Nadina yelled out, “she doesn't want to die.” But Dr. Oz had quickly changed the subject.

Montel kept repeating he wanted to maintain his dignity. A few times we yelled out “What do you mean by dignity?” and “Do you think we have no dignity?”

Barbara Coombs Lee didn't say much. She didn't need to. By the time she came on, the argument in favor of assisted suicide had been completed (if there ever was an “argument” – from the beginning it was clear which side Dr. Oz was on and that the show had been scripted). Dr. Ablow was booed a few times. Dr. Byock was booed when he said, "We're not talking about choice but about control. You want to make sure you die with your boots on and make up."

Every time a new segment started, Dr. Oz would say things like: “The question today is: do we have the right to end our own life if we're suffering?” or “if our quality of life has deteriorated?” On the big screens the question was: “Do you think you have the right to end your own life?” (just as sloppy and as the show’s online survey, conflating suicide with assisted suicide, conflating the right to refuse treatment with assisted suicide).

The final segment was supposed to be questions and comments from the audience. We were divided by an aisle into pro and con. During the break, Nadina managed to get the attention of the producer, Greg, who interviewed us before the show. “Dr. Oz didn't let me speak,” she told him. “NDYers have a unique perspective. We want to be heard.” He answered: “I'm sorry.”

Dr. Oz let a right-to-lifer speak briefly. He called me (Danny) a hero. And Montel replied: “let's not pit patient against patient.” Julie yelled out: “We're people not patients”, but without the microphone, none of us could be heard. A hospice nurse spoke against assisted suicide, mentioning how a woman's life was prolonged long enough for her to hold her grandchild in her arms. But most of the comments were from the other side of the room. Horror stories about people made to suffer, told by someone other than the person, and you couldn’t tell the real cause of the suffering.

Nadina, Julie, Bill, Hope and Ari kept raising their hands but Dr. Oz totally ignored us. One guy said: "These Not Dead Yet members are selfish. They don't care about people suffering. They don't want anyone to have choice.” We yelled out “It's the other way around.”

Dr. Oz kept ignoring us. But at one point, he was right next to Ari and Ari had his hand raised right in front of Dr. Oz's face. Dr. Oz asked him: "Are you right to life?" Ari answered: "No, I'm with the National Council on Disability.” Dr. Oz let him speak and Ari was great. He gave some statistics about Oregon, and even mentioned the Latimer case, the Canadian farmer who got a lot of support from the assisted suicide movement when he was prosecuted for murdering his 12-year-old daughter with cerebral palsy.

We tried after the show to reach out to Dana. Julie tried to catch up with her and her family, but was pushed away by Dr. Oz's production assistants. All of us NDYers were extremely frustrated and agitated. We all agreed we had been setup and just used as window dressing.

That audience was a microcosm of our society. Most every one in that audience was convinced that disability is a fate worse than death. Most of those in favor of assisted suicide thought we were selfish for wanting to live no matter what. Others, like the right-to-lifers, sitting along side us, saw us as heroic and saintly for putting up with what they imagined was great suffering and not succumbing to sinful thoughts of suicide. Sitting in that studio, we saw more clearly than ever how very important Not Dead Yet's work is and how extremely difficult.

Bloomberg Rails Against Accessible Taxis

2011-10-22T08:20:00.000-07:00

I have never been impressed with Mayor Bloomberg. But in the past week I have gone from unimpressed to deeply annoyed if not angry. It is clear to me that Bloomberg is desperate to keep the inaccessible taxi of tomorrow as the NYC taxi fleet. If he is successful I will be unable to hail a cab in NYC for the next 10-15 years. Bloomberg words, his anti disability rhetoric, is so far off base now it is hard to fathom. Someone needs to tell the man the ADA in this case is clear cut--transportation must be accessible to people with disabilities. The Feds made that clear but Bloomberg failed to take note Bloomberg I suspect may be trying to play good cop bad cop with David Yassky chairman of the NYC TLC. This week Yassky wrote that he does not think the TLC is violating the ADA in spite of the fact less than 2% of taxis are accessible. He did however acknowledge city officials "cannot ignore the possibility that a court order will at some point require a significant portion of the taxi fleet to convert to accessible vehicles". In stark contrast Bloomberg has waged a media campaign against accessible taxis. His words and actions are objectionable and insulting. He makes it sound as though if taxis are required to be accessible the entire NYC taxi system will collapse.

So what has Bloomberg said this week? Among the low lights:

The dispatch system will work. He expects people with a disability to call the TLC who will dispatch one of the 231 accessible cabs in the city. Bloomberg thinks 231 accessible cabs is adequate and that a dispatched cab will arrive promptly. Give me a break. This might work in the middle of the day in August when the city is empty but I would not expect a cab to arrive promptly if at all on an ordinary day. Forget trying to get a dispatched cab during rush hour, at the end of an event, or on a busy weekend.

The suspension system on the accessible cabs is inferior and dangerous. Accidents to non disabled people are inevitable and the city will be deluged with law suits. According to Bloomberg "The suspension is a lot worse and its harder to get up and pay the cab driver and get in and out and that sort of thing". When I read this I almost laughed. The issue of safety was used for decades to bar people with a disability from schools, buses, planes, trains, concerts etc. This new twist is preposterous. The ADA is clear--public transportation must be accessible

New York City is unlike any other city in the country. Bloomberg said "it just doesn't work in a city like ours, and I don't know that the U.S. Attorney General understands how people live in the city and the traffic patterns and that sort of thing". Traffic patterns? I think a grid system is pretty basic. And how I wonder is it that other cities with far more complex traffic patterns have accessible cabs and cabbies that actually stop for people with a disability. London and Dublin are two such cities.

The passenger in accessible cabs sits far away from the driver. Tips will be radically smaller because of the distance. According to Bloomberg "When the cabs are big enough for a wheelchair a lot of cabdrivers say that the passengers sit farther away and they can't establish a dialogue and they get lower tips". The distance is also a grave danger as well. Bloomberg maintains "You know, there's so much more pace between the backseat and the divider, you're going to have people getting hurt". A dialogue with a NYC cab driver? Who is Bloomberg trying to kid? As for the size, Bloomberg makes it sound as though the accessible cab is the size of a tractor trailer. Preposterous.

I saved the best comment for last. Bloomberg: "You can't take a wheelchair out into the street and try and hail a cab". What? Exactly where does Bloomberg expect the human beings sitting in a wheelchair to hail a cab? I am sure he ever seen a person navigate the streets of New York City using a wheelchair. I am in the street all the time. When I park my car mid block and walk to a muni-meter, fail at hailing a cab, go an entire block in the street because a curb cut is blocked or not present, avoiding construction etc.

I hope Bloomberg is desperate. If history is any indication, he sounds like former Mayor Koch. The closer the city came to being forced to make the buses accessible the more obnoxious Koch became. And Koch was the typical New Yorker--sharp witted, opinionated, and wrong. Koch's anti disability rhetoric was at least creative in retrospect. Bloomberg;s anti disability rhetoric lacks any creativity, substance and relies on antiquated bigotry. Bloomberg is very much out of touch with disability rights. Indeed, I doubt the man even knows what the term means. I suspect our billionaire mayor's mind set is stuck in a charity model of disability where laws like the ADA can be easily ignored. I sure hop the Feds will remind him that people like me have civil rights.

Dr. Oz on Assisted Suicide: A Train Wreck

2011-10-21T08:44:00.000-07:00

Last week I received an email from Stephen Drake, research analyst, for Not Dead Yet. He wrote that he and Diane Coleman might be on a syndicated television program called Doctor Oz. The subject was assisted suicide, not exactly the usual afternoon television fodder. To say I was skeptical would be too generous—daytime television is not exactly known for quality programming and I had never heard of Dr. Oz. As it turns out Drake and Coleman could not appear. I decided to attend knowing some members of Not Dead Yet would be present as well. I had three concerns: first, the daytime television model is for tear jerking, maudlin depictions of any issue and this would undermine any serious discussion. Second, would the show use people with a disability as mere window dressing for the viewing audience. Third, would the show be grossly biased. My concerns were well placed. The taping of the show was in my opinion a train wreck. It was an amazingly horrible experience. All my concerns came to fruition. In fact I would go as far as say the show, its host and producers were unethical.

As part of the expert audience, prominently sitting in the center of the studio, I did not say a word. It was very clear from the opening that my views were not valued. Yes, I was indeed window dressing. The so-called expert panel was hopelessly biased in favor of assisted suicide. Any opposition to assisted suicide was token at best—the minimal required that gives the appearance of being unbiased. This role was performed, scripted perhaps, by Keith Ablow who seemed to delight in upsetting people. The audience became hostile to any semblance of opposition to assisted suicide and was vocal about it. Worse yet, they used a highly emotional, think tear jerking, style to move the audience. The message was clear: disability is a fate worse than death and that assisted suicide is the most humane thing available to us. Out of the goodness of society’s collective soul the terminally ill and all those suffering should be put out of our misery.

The taping of the show made me feel like I was in a time warp—think Jerry Lewis telethon at its worst circa 1960. I fear I witnessed a raw new world emerging that I suspect reflects middle American values. It was ugly and I was forced to envision a world in which the ADA was never passed into law, disability rights did not exist, the medical model of disability was the only model, and equality was given out in small doses to appease pesky crippled people and make the almighty normal bipedal humans feel better about themselves. This ties directly into the push for assisted suicide laws and the serious threat such laws are to those with a disability and other marginalized people whose life is not valued.

I know daytime television programming is about entertainment. A sober and detailed discussion was not what I expected. But I had no clue just how bad the show’s taping would be. If possible it set an all time low. It far exceeded the very worst I could have possibly imagined. In this regard, Stephen Drake’s post, “Media Alert—Looks Like Dr. Oz is Planning Slanted Show on Assisted Suicide”, at the Not Dead Yet blog was prophetic. Most of the expert panelists were in favor of assisted suicide. Little time was devoted to rational reasons why such laws are in fact dangerous. Montel Wiliams, vigorously for assisted suicide legislation, exemplified the dichotomy between those for and against assisted suicide laws. Advocates for assisted suicide used highly emotional arguments that were very effective and touched the hearts and minds of those in the audience. Do we have the right to die was Dr. Oz’s refrain. The precious little time allotted to those opposed to assisted suicide were used as the veritable straw man--the downer who poured water over the parade toward assisted suicide legislation.

I have thought a great deal about what took place at the taping of the show. It is clear to me now that the show was well scripted. A very clear plan existed. The emotional argument for assisted suicide was to be pushed as hard as possible. This would whip up the audience and lip service would be paid to those opposed to assisted suicide. The audience reaction would be visceral and nasty to any nuance or balanced point of view. The goal of the show was to illicit a strong emotional response. And here is where I think the host and producers were unethical. The star of the show—a deeply depressed black woman with ALS accompanied by a home health aide, her two children, sisters and mother. This woman was used, exploited really. She was the archetype for why assisted suicide legislation should be passed into law now. She was portrayed as trapped in a body that was failing and would continue to fail. Huge photographs of her in an athletic uniform were used to juxtapose her sitting in a wheelchair, respirator dependent-a fate worse than death. How could society be so callous as to deny a release from her suffering. The host ever so sincerely asked her children would they support her mother if she wanted to use assisted suicide. Tears flowed, the audience was broken hearted and angry. Let this woman poor die. Pan the dejected audience, go to commercial, be sure to include other people with a disability in the camera frame.

The thought that I was a part of this show makes me feel like my humanity was violated. I am also deeply worried. There is a serious push to pass assisted suicide laws in the Northeast. Shows like Dr. Oz will surely be used by well funded groups like Compassion and Choices when they give presentations. The visuals and emotional power of such tear jerking stories cannot be dismissed. It is powerful stuff. It is also grossly misleading. While others will be moved to tears this is what I was thinking; how many people with ALS, in the exact same condition as the woman on the show, are content and leading rich and full lives? I would venture to guess the vast majority. I am not dismissing the serious nature of ALS—it is an inevitably fatal condition. But why is it this woman that appeared on the show is applauded for wanting to die and not adapting to her disability? She is the tragic hero while the person with ALS and all those who adapt to disability are not supported or given any respect. Social supports for people with a disability that want to live a life that includes the mundane, a job, family, access to mass transportation and a decent home are given begrudgingly. These people are difficult, a drain on the country’s financial resources. No wonder I have not felt equal since I took my last step when I was eighteen-year old.

What the audience failed to learn was the laws for assisted suicide in Washington and Oregon have taught us that people do not choose to die because they are in pain. And the show clearly led people to believe people with a disability are in pain and hence should have the right to die. I believe in the exact opposite: we all have the right to live. The reality is people choose to die because they believe they have no dignity and fear being an economic burden on their loved ones. This is not a failure of the medical establishment (we are all going to die afterall) but rather a social failure. We fail to support the vulnerable. And like it or not I am part of that vulnerable population. Many good things have come as a result of my paralysis and vulnerability. I know that dignity and quality of life are extremely subjective concepts. I also know people see me and think they would rather be dead than paralyzed. Some are even willing to share this sentiment with me. Thus I am no different from any other person with a disability. And we people with a disability desperately need to get our act together. Show like Dr. Oz are misleading and dangerous. Our voices need to heard, our existence valued.

NYC Taxis, the Mayor and the U.S. Attorney

2011-10-18T06:55:00.000-07:00

Sunday October 16 the New York Daily News published an editorial that took me aback--"Mayor Bloomberg Must Make the City's Taxis 100% Wheelchair Accessible". A few days earlier the Manhattan U.S. Attorney, Preet Bharara filed court papers that the government agrees with disabled activists who have sued the Taxi and Limousine Commission. In no uncertain and in unusually blunt terms Bharara wrote the TLC cannot continue to violate the ADA. The U.S. Attorney's remarks are out of the norm and are without question the strongest criticism of the mayor and the TLC to date. At present, the city does not require taxis to be accessible. The NY Daily News noted that "there are 13,237 yellow taxis; 231 can accommodate a wheelchair. That's 1.7%, making the chance of hailing one almost impossible. That tiny proportion clashes with the ADA's requirement of equality of access and cannot be remedied by a sketchy plan for a system of telephone-dispatched wheelchair-accessible cabs. What's more, federal standards mandate that vans must be accessible when they are employed as cabs.
Bharara got to the point, stating, "a ruling by this court now that the city is obligated to ensure that all new taxicabs are wheelchair-accessible is all the more important because it will likely have a significant impact on both the city's implementation of an accessible taxicab dispatch system and its selection of the vehicle that will become the 'Taxi of Tomorrow.'"

The TLC concept of a dispatch system will not only fail miserably (which it did under a test run last summer) it is an obvious attempt to avoid complying with the ADA. Based on the U.S. Attorney's words it seems that the mayor and TLC have no choice but to accept the fact they cannot continue to break the law. The so called taxi of tomorrow must be accessible. This losing fight on the part of the city fight reminds me of the late 1970s when Mayor Koch was violently opposed to making city buses accessible. I vividly recall Koch loudly telling reporters it would be cheaper to rent a limo for every person with a disability than putting lifts on NYC buses. Koch was not only wrong but spectacularly wrong. NYC buses are not only accessible but are used by thousands of disabled people every day. I have no doubt Mayor Bloomberg is as impressively wrong as Koch was.

Bloomberg will no doubt try and fight the U.S. Attorney. His administration has been hostile to disability rights for quite some time (see my post about hurricane shelters and lack of accessible locations to vote). I am hopeful this is a fight Bloomberg and the TLC will lose. Even with a victory change will be slow to come. Hailing a cab for a person such as myself that uses a wheelchair is an exercise in futility. I tease my friends an armed bank robber being chased by the police has a better chance of haling a cab in New York City than I do. But do not take my word for it. In a letter to the editor published by New Mobility, a yuppie magazine for people with a disability, Ellen Stohl, a visitor to the city wrote: "I just returned from a trip to New York City. Cabs do not stop for people in chairs. Outside the Empire State Building, my family and I tried to hail a cab. My husband kept flagging them down, but they would pull in and then pull right back out when they saw the chair." This is an every day event for anyone in NYC that uses a wheelchair and is naive enough to try and hail a cab. But Stohl is a smart woman. She learned the NYC way to hail a cab. She wrote "I finally had to hide behind a big flower pot while my husband and a ticket salesperson waived down a cab. We got my mother-in-law and daughter into the cab before I came out of hiding so the cabbie could not leave". And that my friends is about the only way a person that uses a wheelchair in NYC can get a cabbie to stop. It is grossly wrong and the norm. If the Mayor and TLC have their way nothing will change for decades. If they lose, I hope NYC cabbies of the future may actually change--there would at least be hope someday I can hail a cab like other New Yorkers.

Blind Stupidity: The Media Misses the Point Again

2011-10-16T07:35:00.000-07:00

Print media many contend is dying. What will replace it is subject to debate. I for one will not miss mainstream New York newspapers or television news programs. For me, the internet has firmly replaced the need for newspapers and television news programs. Yet I still glance at the newspapers--on line of course. My guilty pleasure is the oldest local tabloid, the New York Post. I love the headlines--tawdry and wildly creative. I avoid reading any of the "news" in the NY Post. No one I know reads the Post for the news. You read the Post for gossip in fashion, politics, and sports. And since I am New York Ranger fan I read the Post because Larry Brooks is a controversial writer who covers the team. Yesterday as I was reading the sports page and on the screen I saw a picture of a very attractive woman and the headline "Blind Ambition". Despite the cute play on words I told myself do not read that article. Just don't do it. Give credit to the Post, I just could not resist. The Post is smart I am stupid. How I wish I had not read the article. It was dreadful and typical--the archetype for articles about people with a disability that miss the point by a country mile.

The main stream media loves creative titles when disability is involved. "Blind Ambition" is catchy and the picture of a very attractive woman in her 20s is hard to resist. I knew the article was going to be dreadful after reading the first sentence: "She's Wall Street's blind bombshell". Here are some of the low lights--lines that are objectionable. Let me parse these lines and reveal the underlying cultural assumption.

NY Post: "Despite being legally blind, the bullish beauty works on the equity trading floor of JP Morgan Chase".

Assumption: People who are legally blind are not expected to hold a job and certainly not a job that involves responsibility.

NY Post: "But work came with adjustments".

Assumption: Blindness is so terrible I cannot imagine how she copes and it is remarkable she is competent. She must need multiple and costly accommodations.

NY Post: "She is surrounded by three massive 24-inch computer monitors--twice the size of her colleagues screens--to track the market, has large colorful stickers affixed to her keyboard to make out letters, and uses text-to-speech software to read her emails which are fed to her through headphones".

Assumption: Wow, JP Morgan Chase is wonderful! Imagine they spent all that money on high tech equipment out of the goodness of its heart so this poor woman can work. She sure is lucky. The employer is bending over backwards for this woman.

NY Post: "It's an incredible example of fortitude to do her job the way everyone else does".

Assumption: People who are blind cannot do what sighted people can. Those blind people that can do the ordinary--work like the sighted--are remarkable people. Incompetence and lack of ability is assumed to go and in hand with blindness.

I do not think I am being too harsh. I accept this is a tabloid and my expectations are severely limited. With editing this article, even with its catchy title, had potential. The NY Post could have made people think. For example, a good article could have noted the following.

The woman in question is lucky to have been employed before she lost her sight in 2009. The unemployment rate among blind people is 70% This familiarity surely enhanced the chances she could return to work. The accommodations made by JP Morgan Chase are required by the ADA--it is the law. The large screens and software used were not costly. In fact, accommodating an employee with a disability is not costly--usually a few hundred dollars at most.

The above facts never seem to wind up in print. The focus is always on the kindness or generosity of the employer who bends over backwards for a person with a disability. This person is always "remarkable" and possesses "fortitude". The unspoken corollary is this person puts all those other incompetent lazy crippled people to shame. If most people with disability were like this person they too would have a job. This lets society and its failure to accommodate people with disabilities off the hook. Maybe the unemployment rate would not be nearly 70% if mass transportation and affordable housing were accessible. No, this is never brought up. Instead, we laud the plucky individual cripples that succeed against all odds. This makes me crazy and I am perplexed any human thinks this way. The problem people with a disability have is a long held ingrained social bias that is demonstrated in the form of a lack of access in all avenues of life. Instead of praise one sole blind person why not pose the following questions:

Why is text to speech software not included as part of every computer operating system?
Why is closed captioning not universal on line and in all video produced?
Why is every mass transportation system not accessible?
Why is not all new home construction accessible?

I can pose hundreds of other questions about the gross lack of equal access for people with disabilities in American society. I am not sure what good it would do. For reasons I have never been unable to understand, when it comes to disability American society has yet to enter into a national dialogue about its meaning, importance, and exactly why inclusion has proved elusive. Articles such as the one discussed in the NY Post are but a small sign equality for people with a disability is a long way off.

Come On, How Bad is it?

2011-10-14T12:20:00.000-07:00

When the issue of disability rights comes up I am often asked, "Come on, how bad it it?" Some people have a hazy idea there was a law passed a long time ago that they are convinced solved all the problems of disability based discrimination. Others are simply oblivious. Disability discrimination in their estimation is a myth. The reasoning here is two fold: first, no one would or ever has discriminated against crippled people. Society looks after the less fortunate. Second, since discrimination has never taken place there is no need to protect the civil rights of people with a disability. Any connection between disability rights and civil rights is accordingly wrong and way off base. It is hard for me to fathom the way the general public thinks. But then I think of course, people are not exposed to disability until the end of life if they live long enough. Disability is not taught in secondary schools nor is it part of university curriculums. Hence, ignorance abounds.

So to return to the question, "Come on, just how bad is it?" Pretty damn bad. Horrifying in fact. A series of grim statistics have been released that indicate things are very bad. First I read a report in the American Journal of Preventative Medicine, "Sexual Victimization Against Men with Disabilities" that not only are women with disabilities at great risk of sexual abuse but so too are men. This report found that men with cognitive disabilities were four times more likely to experience abuse than men without cognitive deficits. I tend to think the risk might be even greater because the study was specifically about cognitively disabled men who were not institutionalized. The researchers glumly concluded "Men with disabilities are at a heightened risk for lifetime and current sexual violence victimization. The most notable finding is that the prevalence of lifetime sexual violence, completed rape and attempted rape against men with disabilities was comparable to that against women without disabilities".

In keeping with the sexual violence and victimization, this week the Department of Justice released a report entitled "Crimes Against Persons with Disabilities, 200802010-Statistical Tables". And yes you guessed it things are pretty bad. In 2010, 567,000 people with a disability aged 12 and older were the victims of nonfatal crimes. No statistics were included about fatal crime victims. Again, these figures do not include people with disabilities in institutions. Nonfatal cries are rape, sexual assault, robbery, aggravated assault and simple assault. Amazing this represents progress. In 2009, 753,000 people with disabilities were the victim of a nonfatal crime.

Again, I return to the question, "Come on, how bad is it?" Bad, very bad. And it gets worse. The violence experienced by Americans is minimal when compared to people with disabilities living in Third World countries. The odds of a person with a disability in a Third World country living to the age of 21 is about 20% Am I lucky to live in America? I suppose so but I certainly do not feel safe after reading the two reports discussed. I have never felt equal. I fear crowds. I am exceedingly aware of my surroundings. I secure my wallet carefully. I do not attend any event that could remotely turn violent. This excludes me from protesting, something I would very much like to do. I would not consider going to a football game here or abroad. I know in the event of a natural disaster shelters are most likely not accessible. Forget mass transportation. In the event of a plane crash my dim odds of survival are worse than every person that walked onto the plane. Need I go on? Equal I am not. In short, yes things are bad. But this does not bother me nearly as much as the fact no one seems to care. Not my neighbors, certainly not the local school board. The town government maybe? Not a chance. The only people who care are those whose life has been touched in a tangible way by disability. Some of my friends and family care. Some of my former students care. I know the people that read this blog care very much. I just wish I could reach the average person on Main Street as politicians like to invoke. Those people matter. Those people are the one that pose the question "come on, how bad is it"

Keep Quiet: A Clear Message

2011-10-12T14:01:00.000-07:00

Certain social environments are hostile to people with a disability. There is no universal source of agreement on this. Much depends upon one's age, disability, gender, sexual orientation, social status, geographic location etc. For me, your average paralyzed, middle aged white male I do my best to avoid Catholic Churches, health food stores, and gyms to mention but three places that are hostile to inclusion. I know if I venture into anyone of these places I am going to be demeaned, insulted and treated as a second class citizen. My attitude is why bother? Cut my loses and read the Bible, order vitamins on line, and work out at home. I would also put one more social setting on the list as hostile to disabilities--and this is by no means universal--but would include university campuses. Given this, I was not surprised to read about a student at a New Jersey community college who was subjected to gross bigotry. The student in question stuttered. His teacher, an adjunct, suggested he not take up important class time and ask a question but rather submit questions in writing. The teacher also refused to call on this student in class. Much moral outrage has been expressed and the story has spread well beyond the confines of the New York City area. As usual when it comes to disability, the mainstream press has failed to grasp the larger importance of this incident. Instead news stories are stuck in the lurid details: how bad is the stutter? Adjuncts are under paid and incompetent! Is stuttering a disability? Is the teacher request for written questions a reasonable accommodation? All this misses the point--badly. What is at issue is a larger and growing animosity to students with disabilities on university campuses.

Are some American universities truly inclusive and responsive to disability rights? Yes, and I can think of many with a long history of inclusion. But the opposite is true as well. Some universities are hostile to people with disabilities. For instance, Ivy League institutions I would consider among the worst. When I graduated from Columbia in 1992 a mere two years after the ADA was passed into law I was pissed. Academic administrators purposely made my life miserable at Columbia. Access was not a priority, it was an onerous expensive burden. Cost cutting was common and elevators and wheelchair lifts rarely worked--more than once I was told service contracts for repair were too costly. Entrances that were accessible were often locked, keys mysteriously disappeared. These problems are minor when one considers the social hostility. More than once I was questioned about my place as a graduate student. Did I not feel guilty that I was preventing another qualified student from getting a degree? You see it was assumed I could never work, publish, or be employed.

Throughout the 1990s and until the mid 2000s universities became more accommodating socially and physically. Few if any professors were hired but plenty of students with disabilities were accepted. The welcome wagon came to a screeching halt when the economy tanked and a critical mass of students were suddenly not only asking but demanding reasonable accommodations be made. More than once I have had my professorial peers confess the campus "was over run with students with disabilities demanding ridiculous accommodations like extra class time". When I replied I saw no difference between a ramp and extra time on an exam I was deemed "difficult" or told "that ramps were entirely different".

What then is the larger significance of the story about the student with a stutter? Universities may be more physically accessible but the same institutions that build ramps and install elevators without complaint are far from inclusive. We people with a disability are second class citizens. Lip service is paid to our civil rights. How dare we ask for more! And I have it easy. Physical access for wheelchair users is assumed to be required and as such it is provided--of course if such access is expensive it is the first line item cut from the budget. The real animosity is reserved for students with learning disabilities and what can be called disability studies. Inclusion is much more than ramps and extra time to take a test. Over at Planet of the Blind Kuusisto remarked:

"when higher education can't manage a simple accommodation it delivers that old name tag: “second rate”. By not solving the problem the hierarchical dynamics of ableism are a defacto position.
Doing better means achieving something more than assuring the professional and dignified delivery of accommodations for people with disabilities. It requires a vigorous affirmation of the term “nothing about us, without us” and it means demanding full equality and respect for people with disabilities from all the offices of higher education. Unfortunately, as Lennard J. Davis has remarked, there’s a lingering ableism within neo-liberal circles, one that progressive faculty and administrators don’t generally recognize. I agree with Lenny Davis that the failure of higher education to incorporate disability into a broader framework of campus diversity is a good part of the problem. When an institutilon can imagine that people with disabilities are to be accommodated by special segregated offices and that's the whole of the matter, you are simply reaffirming a victorian (small v) assumption that the cripples belong in a special place--certainly they don't belong in the agora."

This is all too true. In my career I have yet to feel welcomed and my views on disability rights respected at universities where I have worked. Access it was clear was my problem. If I ever broached the subject of disability studies being included in the core curriculum the idea was met with derision. If you want to delve into this in detail, I suggest you read Lenny Davis work. His book Bending Over Backwards is outstanding as is his most recent essay in the Chronicle of Higher Education entitled "Why Is Disability Missing From Discourse on Diversity (September 25). The skeptic reading this post may be thinking come on, you are full of yourself. I think not. When my son applied to college I learned much about the business of higher education. Diversity, we parents about send in huge tuition payments, were told the campus is diverse. Big bold colorful pictures of young men and women throwing frisbees abounded. Every ethnic group was represented. Not once did I see a photograph of my people. Never did I see a paralyzed student or professor depicted in admissions brochures. In fact, more than one campus tour was entirely not accessible. It was suggested that I remain behind while my son take a tour with dozens of other students and their parents. Call me crazy but this felt and seemed a lot like segregation. Would they have suggested black people stay behind? Not a chance. The fact I had this experience on the grounds of supposedly institutions of higher education is deeply troubling. A sure sign that universities have long way to go in understanding and respecting people with a disability. A good start might be a class on disability rights.

Stephen Kuusisto: Words to Make You Think

2011-10-07T07:40:00.000-07:00

Over the last few years I have mentioned many disability rights oriented blogs. I have my favorites of course and among the blogs that never fails to impress me is Stephen Kuusisto's Planet of the Blind. If you have not read his blog and published work--especially his memoir Planet of the Blind--stop reading these words. Go to his blog or better yet buy one of his books. Kuusisto is way smarter than I am. His writing is head and shoulders above anything I have published or posted here. He is also funnier than I am. By funny I mean it in the rarest of ways--he can make you laugh and think at the same time. Okay, my man crush is over. You get the idea--Kuusisto is funny, smart and a gifted writer. If an academic could have a fan club I would be a charter member.

Remember the above words as I want to take Kuusisto to task. He put up a post on his blog, Essay on the Politics of English Clarity and Them Folks with Disabilities, that has me puzzled. I have read the post a dozen times in the last few days and am no nearer enlightenment. One thing, however is clear, the post has me thinking long and hard. It is also a fine piece of writing. For instance his words about what he calls the post human age, the mix of technology and the body, will blur the line between what is perceived to be normal and abnormal. Kuusisto astutely uses the example of well-known amputees Aimee Mullins and Oscar Pistorius. He writes

"that while prosthesis may become no different than the brand of automobile one drives, invisible disabilities or those that produce a public misapprehension about intellectual capacity (blindness, apparent deafness) will remain problematic in the town square. While physical difference can become fashionable, disablement as a capacity of mind is more difficult for the public nerve. In Western tradition we tend to believe in the mind as a substance rather than an essence, we cherish thought that is fast and muscular but denigrate neuroatypical thinking. We believe in “mind over matter” and imagine that those with learning disabilities or who are on the autism spectrum are simply not doing enough pushups."

Yes, the public nerve is fickle when it comes to disability. To me my wheelchair is an empowering adaptive device. For the general public, a wheelchair is the ultimate symbol of disability, infirmity, and total lack of personal autonomy. My wheelchair has no cool factor, its presence, my presence, a tragedy. In contrast, Mullins and Pistorius prostheses and the technology involved is lauded and valued. Prostheses arouse the notion of science fiction cyborgs that have captured the public imagination since the Six Million Dollar Man was one of the highest rated shows on television. We can rebuild him I think was a catch phrase. But exactly what are we rebuilding? A body that is socially acceptable. Given this, little or no value is placed on wheelchair technology. Instead we get preposterous devices such as the exoskeleton.

The above is where I stopped comprehending Kuusisto. He goes on to write that the politics of language demand precision when it comes to disability. We cannot, he maintains, afford to be fooled. He then refers to Nancy Mairs who embraced the word cripple. I like the directness of the word. I have lost use of my legs. I am indeed crippled. No fooling. Like Mairs, I want to believe I swagger. I am not meek, I am strong. Part of this strength I derive from my crippled body. And here is where Kuusisto loses me,. He concluded his post:

"Mairs writes famously, “as a cripple, I swagger” a position that’s unassailable given the economic abjection in “disability”--that Victorian term still tied to the factories of the Industrial Revolution--it was Karl Marx’s noun for those who lacked the economic utility to be useful workers. Surely “disability” does not swagger. Moreover the word carries no degree or standard of completeness. This is its signature problem for if a cripple is entire, singular, and freed from oppositional enactments with ability, a person with a disability is trapped in a triangle of etceteras--unable, etc; incapable, etc; accordingly, vaguely sub-Cartesian--sans thought, etc. Disability disorganizes conduct and places physicality outside of possibility. So the term has less to do with opposition to normal activity and a good deal to do with a prejudicial conspiracy against the mind. Just as nothing in nature is truly broken, just as evolution defies the normal, there is no proper categorical or taxonomic position that can hypostatize variance or give it a name.
As I’ve said more than once I prefer “world citizen” to disability. I prefer omnimodal essences and motive power.

I have read a lot of Marx. I have read plenty of disability theory too. I know exactly which work of Mairs Kuusisto is referring to. And yet I am perplexed. First, physicality is not beyond the ability of crippled people. I ski, kayak and have fathered a son. All this take a measure of physicality. Second, we cripples have a place in society. It is not a "taxonomic position" I enjoy, in fact it one one I rail against. Namely, we cripples are far from equal and perceived to be damaged goods. Like Kuusisto I do all I can to undermine this societal assumption. Third, the preference for "world citizen". Give me a break! People look at me as though I have two heads when I use words like cripple and ableist or ableism. If I were to use "world citizen" I would be laughed at and mocked. I can hear my friends now "I think you smoked too much dope in college man. Go hang out with your Occupy Wall Street buddies".

Here is where I think I differ with Kuusisto. I live in a gritty and at times a bigoted nasty world. I struggle as a part time academic, writer, activist and jack of all trades. Will do anything for a living sort of guy. This is not sour grapes, just the way things worked for me. Kuusisto in contrast is a big time academic and works at a top flight university. He deserves everything he has worked for as he too lives in a gritty and bigoted world. But, and you knew a but had to be coming soon, he has a place to hang his hat and be respected. Most crippled people have no such place where we are respected. Hence I am stimulated by Kuusisto's work, delighted by the way he plays with words yet found his post distressing. Where is its connection to the ordinary and gritty world and average crippled person? Not all cripples know Marxist theory and Nancy Mairs work and I consider myself lucky to be able to grasp most of what Kuusisto wrote. Sadly, most cripples are too worried about their meagre benefits being cut, losing their home. accessing mass transportation, or finding work. These people, my people, are always in my thoughts.

Rude People Never Get It

2011-09-29T14:04:00.000-07:00

It has been raining off and on for days. I have been too lazy to go out as I don't feel like getting drenched. Today I had no choice. I was out of beer and school town taxes are due. I waited until the end of the day hoping the skies would clear. No such luck. Off I go to the post office, bank, and supermarket in the rain. Woe is me.

Amazingly there is a handicapped parking spot open at the strip mall. I snag the spot and quickly realize waiting for the rain to let up is a waste of time. As I am getting out of the car putting my wheelchair together I see a guy in a big SUV staring at me through the driver window. By staring I mean a bold face stare. I am clearly fascinating. I am rushing in large part because I do not want to get drenched. Off I go to the post office and supermarket. Taxes are on their way and I have beer to go with my dinner. What more could a man want? As I am getting back into the car the same man in the SUV is staring at me. Again, a bold face stare. Now I am annoyed. I stare back, glare actually. He does not get it. And yes it is still raining hard. The man rolls down his window and the following exchange takes place:

Me: The show is over, stop staring.

Man: Wow, it is amazing how you get that wheelchair in and out of the car.

Me: Stop staring, you are being rude.

Man: I am a nice guy. You are amazing.

Me: You are not being nice, you are being rude.

Man: Why are you mad? You are amazing. I am nice.

Me: No, you are being rude. I do not want to be stared at. I do not like it. Stop staring.

Man: It is cool the way you put the wheelchair together. I like to watch.

Me. The show is over. Stop staring you are being a jerk.

Man: Why are you people always so bitter? I am just being nice.

Me: You are not nice. You are point blank rude. Stop staring.

Exasperated, the man shakes his head like he is dealing with a difficult child. As the window goes up he says: "Some people you just can't be nice to" and suddenly yells "you ass hole".

Ah just another day in paradise. I am so glad that 20 years ago the ADA mandated that I have equal rights. I am not sure this memo is understand by more than a tiny fraction of Americans. The above exchange was hardly unusual--it happens to me on a regular basis. Call me crazy--or a bitter asshole--but I find getting my wheelchair in and out of the car as exciting as watching a bipedal person get in and out of his car. This is not "amazing" stuff and I was very clear I did not want to be stared at. To me, that is not much to ask. What is amazing to me is how rude and oblivious people can be. Is this man vaguely aware of how rude he was? Not a chance. The problem in his estimation is "you bitter people"--yes I was reduced to "you bitter people" and labeled an ass hole. Is it any wonder there are days I do not want to leave my home? Social assaults are commonplace, accepted and on rainy days like this do think they will ever stop.

Disasters and Disability

2011-09-27T07:26:00.000-07:00

Earlier this month I wrote about the dreadful response of New York City's emergency preparedness program as it pertained to people with disabilities. In spite of ten years of planning and countless meetings the city was not prepared to meet the needs of people with disabilities. Emergency shelters were not accessible. School buses used to evacuate people had no lifts. Emergency announcements did not provide American Sign Language interpreters. Maps of shelter routes could not be used by people with low vision. More than one person that used a wheelchair was turned away from an emergency shelter. These are the mere highlights of the city's epic failure.

It seems quite evident to me that Mayor Bloomberg's administration has utterly failed to meet much less respect the rights of people with disabilities. Perhaps Bloomberg's indignant reaction in 2009 to Michael A Harris, a disability rights advocate whose tape recorder inadvertently went off at a press conference was a sign of trouble to come. Callous in the extreme, Bloomberg has given an encore performance. At a press conference after Hurricane Irene Bloomberg seemed to suggest that people with disabilities should rely on taxi cabs rather evacuation buses that were not accessible. Good luck with that one! Less than 2% of city taxis are accessible. And need I mention the so called taxi of tomorrow will not be accessible either. Catching an accessible cab even on the best of days is not easy.

Given the above I was heartened to read the Brooklyn Center for Independence of the Disabled and the Center for Independence of the Disabled, New York are suing the city in Federal District Court. The suit alleges that Bloomberg and the City of New York discriminate against men, women, and children with disabilities by failing to include their needs in emergency planning. To me this is self evident. New York is a hard place to live--I accept this as a matter of fact. However, I do not accept the Bloomberg administration making things harder for people with disabilities. What I see is a pattern of discrimination that has percolated throughout the tenure of the Bloomberg administration. I get a sense from reading the statements of disability rights advocates that the Bloomberg administrations listens to what they have to say and then completely disregards the rights of people with a disability. I also get a sense the failure of the city emergency preparedness program to meet the needs of people with a disability was the last straw. People, disabled people, could have died. Our risk is disproportionately and needlessly high. Hence I cannot help but conclude that Susan Dooha, Executive Director of CIDNY was correct when she observed "The aftermath of Hurricane Irene reveals a blatant disregard for the lives of persons with disabilities and clearly shows that our efforts over the past 10 years to inform the city of its shortcomings in emergency planning were largely ignored". I am not sure what it will take for the Bloomberg administration to change. Does someone need to die before the city acts?

The Last Word on Identity?

2011-09-26T07:03:00.000-07:00

A month ago when Rachel Cohen-Rottenberg asked me to do a guest post on her blog Journeys with Autism I was stumped. The intent of the post was to "widen the disability perspective". As luck would have it on the same day Rachel wrote to me I received the latest issue of Current Anthropology. The entire issue was devoted to keywords and among them was "identity". I had my topic. Identity has been discussed at length by disability scholars and I thought the subject fit well within Rachel's desire to widen the understanding of disability. I thought the choice may be a bit esoteric but wanted to provide a wider audience with a bit of disability studies theory. Never did I think it would generate a strong response. But a strong response is what I received. Claire Roy (Life with a Severely Disabled Daughter) took me to task and prompted a second post on identity. This in turn prompted Phil Dzialo (Healing, Empowering and Thriving) and Eric (I am a Broken Man You Can't Break Me) from writing about identity as well. Claire, Phil and Eric all have profoundly disabled children. I faithfully read the blogs they maintain for two reasons. First, they are well written and thought provoking. They all write with great passion I envy. Second, their voices, those who care for profoundly disabled children and the adults they become, is largely ignored in disability studies and disability rights.

With this preamble, let me address why identity in terms of disability is important and where it fits within disability history. But I do not want to just look back, I also intend to look into the future. In my life time I identify two distinct eras in disability history. This is not an original observation. Indeed, I am building on the work of the historian and disability studies scholar Paul Longmore. Longmore wrote the first phase of disability history concerned a quest for civil rights. One could debate how successful the first phase was given how often the ADA and forty years of similar legislation has been ignored, broken and eviscerated by the Supreme Court. Even with this jaundiced assessment of the ADA it is important legislation in that the law, our civil rights, are theoretically protected. In short, the law is on our side. Another reason the ADA is important is that it is not designed to "help the handicapped" as earlier legislation was designed to do. The ADA was first and foremost civil rights legislation that aimed to empower people with disabilities. By itself this was a radical departure legally and socially and It has met with stiff resistance. People with disabilities railed against injustice and bigotry. They were politically active and took to the streets across the country. Denver, Washington, New York and other cities witnessed moving acts of civil disobedience that led to real social change. To get a sense of the disability rights movement in this regard read the archived pages of the Ragged Edge or better yet go on line to the Disability Rights and Education Defense Fund and watch the videos of protests from the 1970s. It becomes clear for the first time in American history people with disabilities were forcefully rejecting accepted notions and stereotypes about disability. I vividly recall this era as I was in college. We students with disabilities were pissed and without even knowing were forging a new identity. Yes, there is that word identity. Millions of people with disabilities across the country completely changed. No longer were we tragic figures, patients or clients of the state. No sir. We were disabled and proud. We had rights and we lobbied to pass laws to protect our civil rights.

In the words of Paul Longmore, "The first phase sought to move disabled people from the margins of society into the mainstream by demanding that discrimination be outlawed and that access and accommodations be mandated. The first phase argued for social inclusion. The second phase has asserted the necessity for self-determination." The repudiation of the medical model of disability and stigma associate with disability is easy to illustrate and is self evident. The quest for self definition and disability identity is far more complex to grasp. To this day, disability identity is poorly understood. In part this lack of understanding illustrates the utter failure of disability studies within academia and beyond. Disability studies scholars have delved deeply into identity issues and yet the general public and large swaths of people with disabilities have no clue such a literature exists. Scholars such as Simi Linton, author of Claiming Disability, should be a household name but instead is unknown outside of disability studies. One reason disability studies has failed to resonate with others is it has completely divorced itself from the disability rights movement from which it emerged. This is a huge problem because disability scholars should be shedding light on disability identity.

As I perceive it, disability identity is a collective process that seeks to reinterpret old or antiquated notions. As such it is perfect fodder for an anthropologist such as myself. Like Bob Murphy before me, I can act as informant and ethnographer. And what do I see as it relates to disability identity? Total confusion. The vast majority have no clue what "Disabled and Proud" or "Deaf Pride
means. The result is a jaded view point. For example, Phil Dzialo has written in Disability Identity: A Good Idea Gone Awry?:

"I am a man! I am gay! I am black or Latina! I am a victim of abuse! I am a feminist! I am an alien! I am a born-again Christian! I am Jewish! I am a witch! I am a polygamist! I am a dork! I am disabled! I am fat and proud! And what do these "I am" statements convey about identity (if identity is a true attempt to define the Self)...not much. They classify, they categorize, they define which box to file the form into. Fundamentally, group identities de-humanize and de-personalize."

Dzialo has a point but I shudder to think what would have happened during the 1960s civil rights era if all the identities he mentions above did not perceive they had some sort of collective identity. Would Rosa Parks be unknown? Would segregation still exist? Would gays and women have equal rights? Would the ADA have been passed into law? But Dzialo is onto something here. I would suggest the time has come to move beyond not only the first but second phase of disability history. The law is on our side and there is a hazy idea disability identity exists. To me what is needed is a vibrant disability culture. We people with a disability all share a common history of oppression. We all share a struggle to be included, respected. We all rail against social injustice. We all fight for adequate social supports. We all struggle to access adequate health care. We all struggle against social oblivion. We all have experienced gross violations of our civil rights and very humanity. We all have a common bond. And most importantly we all need to come together. If we do not do this we will never be equal. So this is my call, the emergence of a third era of disability history, the emergence of a vibrant disability culture.

Out of Touch and Different?

2011-09-25T06:51:00.000-07:00

In recent weeks I have been re-energized. The Fall is my favorite time of year. The crisp air, fall colors, and knowledge ski season is around the corner has me waking up well before the sun comes up. I mostly read when I get up and the other day I looked forward to reading a new publication, Life in Action. Edited by Ian Ruder, Life in Action replaces SCI LIfe and Action, publications of the NSCIA and United Spinal Association. I am not sure what to make of Life in Action. One could argue it is a bad time to launch a new print media publication. On the other hand, I assume the two organizations will share the cost of publication and have in reality eliminated one print media publication. Regardless, I will read Life in Action with interest. I think the publication is for those new to spinal cord injury and those in the business of rehabilitation--particularly spinal cord injury. I base this on the ads and content. Large full page ads for prestigious rehabilitation hospitals abound as do ads for durable medical goods.

Life in Action is a perfect publication to leave in the waiting room at a rehabilitation hospital. If one wanted to tap into what is going on at this moment in spinal cord injury this is the publication to read. National in scope, there are many photos of smiling paralyzed people doing a variety of activities. This must be heartening to a newly injured person and his or her family. I can readily imagine a person who knows nothing about spinal cord injury being encouraged and empowered to tap into the vibrant adaptive community. All this is good but I find myself feeling disconnected from the world of rehabilitation and the newly injured. I guess I am old school--I went through rehabilitation a long time ago, before pretty rehabilitation centers in the suburbs existed. My rehabilitation was hard core. I was told you will never walk again, period and exclamation point. I was told never ask for help by therapists. Independence was key, anything else was frowned upon. The physical environment was depressing in the extreme. Frankly, I was scared to death and worked my ass off to escape from rehabilitation and get to college with my peers. In short, rehabilitation sucked. It was a way station where I could learn how to function independently and move on with life. I have no fond memories of rehabilitation or that time period. Rehabilitation is very different today. It is short--shockingly brief. Thanks to insurance companies a newly injured person once medically stable gets a few weeks of rehabilitation. If they are lucky they get additional out patient therapy. The physical environment has changed too. Many centers are quite pretty. I have mixed feeling about this. I can well imagine these centers are like akin to a haven of acceptance. People may not want to leave and the fear I experienced likely absent. There is nothing like a morbid and physically decrepit environment to motivate people to get out and resume their life.

One blurb and survey results made me feel apart from those recently injured. The survey was conducted by the NSCIA. Over 700 people responded to an inquiry about what they would like to read about future issues. The results were stunning. Radically different from what I would have guessed. The top ten topics people want to read about are as follows:

Assistive Technology
Health/fitness
Cure research
Travel
Access
Advocacy/legislative updates
Recreation
Home modification
Coping tips and strategies
Health care legislation

In a word, wow! No mention of employment or education. Health care legislation is tenth! Cure is third! Home modification is eighth! God luck getting in the door of your own home. I am stunned. Utterly taken aback. I am led to speculate that the above results are heavily skewed by newly injured people. I would also speculate what I call the cure industry has gotten its hooks into the rehabilitation world. A lasting legacy of Christopher Reeve perhaps or maybe a high profit margin in cure?

I can assure you we old timers (hard asses?) think very differently. However, I will concede I may have had similar views circa 1978. What changed and how did my views become radically different? I read Robert Murpy's book The Body Silent. This book changed my life. In one afternoon I realized my problem was not paralysis but the social response it created. Here lies the real problem with the survey results. Who is teaching and guiding the newly paralyzed people about the realities of paralysis and the social stigma associated with wheelchair use? I would venture to guess no one. What can a newly paralyzed person learn in a few weeks of rehabilitation? Not much. I had months of rehabilitation. Over those months I learned any paralyzed person who was cool cut off the handles to his or her wheelchair. I learned how to manage my bowels and bladder--these lessons did not come from nurses or doctors but other paralyzed people. I learned how to drive with hand controls. I figured out how to get dressed and avoid skin breakdowns. I learned folding wheelchairs were crappy, E&J was horrible and to get a rigid frame wheelchair. I learned how to change a tire on my wheelchair. In short, I learned how to live independently. And I learned the most from my fellow paralytics.

Do not think I am glorifying the olden days of rehabilitation. It was very different and by contemporary standards sub basic. People were essentially experimenting and making it up as they went a long. The medical model of disability ruled the day and the concept if disability rights did not exist. In this cultural milieu we newly minted cripples thrived and learned hard life lessons. Foremost among the lessons learned were a fierce independence streak and the ability to assert ourselves. We expected nothing of others, people without a disability, and railed against the social bias we encountered. It is these large and small lessons that I worry newly paralyzed people are not learning. This leads me to make a suggestion I doubt will ever come to fruition. Expose my generation, old timers, and disability activists such as ADAPT and Not Dead Yet to the newly paralyzed. We have much to learn and gain from such a meeting. The disability rights movement will benefit from new ideas of recently paralyzed people. Those of us that have lived with spinal cord injury for decades can speak from experience and perhaps derail problems before they arise. This idea has been present in my mind for a long time. I do not think newly paralyzed are ready for the harsh reality they will encounter in an ableist world. The ADA may be the law of the land but it is rarely followed. Discrimination is rampant and it takes time to learn how to cope with bias. These sort of lessons are well beyond the realm of medical professionals. It is this peer to peer connection that could foster change. Ed Roberts, founder of the independent living movement, knew this and tried to implement it in the 1970s. He called it cripple power. An apt name. I hope to see cripple power rise in my lifetime.

Identity and Disability: Part II

2011-09-22T12:10:00.000-07:00

Claire Roy who maintains the wonderful blog Life with a Severely Disabled Daughter has thrown down the gauntlet challenging this bad cripple about identity. If you have not read her blog I urge you to do so. She writes with great passion and I admire her work. I am happy to engage her here in large part because she poses an excellent question. Specifically, she wonders how issues of identity “relate to my daughter and others like her… those with severe intellectual and physical disabilities”. Roy writes that the slogan “disabled and proud” does not resonate for her daughter who cannot express herself and is entirely dependent upon others. Roy is blunt in her assessment of her daughter’s condition noting, “if it was possible to fix it, we would… fuck identity”. Obviously no one wants to have a permanent disability—myself included. For those of us with an obvious physical deficit it is our most identifiable feature. But Roy wonders is this identity. In a word no.

Identity in terms of disability is not defined by a medical diagnosis. Disability cannot be defined by labels such brain damage or spinal cord injury nor socially imposed categories of existence. This harkens to a medical model of disability that for decades determined the identity and roles millions of people with a disability had. The focus here was not on what a person with a disability could do but rather on their physical and mental limitations. By framing the person with a disability within the realm of pathology or limitations disability was individualized. It was a personal problem unique to themselves. This voided any possibility of systemic social analysis. The phrase divide and conquer seems apt. Disability was thus perceived only in relation to normal—meaning typical cognition and typical physical ability. We people with a disability were rendered powerless—the symbolic and real life opposite of the norm. This unacknowledged belief system was the organizing principle for decades. It led to special schools, reliance on institutional care and its modern equivalent group homes. Separate when it came to disability was socially acceptable.

Obviously I reject the medical model and instead embrace an identity that incorporates my disability (here I am leaving aside a discussion of the social model of disability). Some people with a disability can be proud of their disability in the sense it has formed who they are as a person. Here is the fundamental leap people need to make—when I see a person with a disability one thought comes to mind—adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was “normal” so I could kayak or ski like others. Likewise when I see or read about Roy’s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy’s daughter to a person with “normal” cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy’s daughter and myself will come away with the short end of the stick.

In challenging disability as identity Roy has led me to think widely on the meaning of disability and how it has evolved in the last two decades. This in turn led me to think about the two of the more controversial articles I have written—the first about Christopher Reeve and the other about growth attenuation known at the time as the Ashley Treatment. When I published these articles some of the responses I received via email were overwhelmingly negative. By negative I mean verging on hate mail. This took me aback until I realized I was questioning the accepted social order. As a close friend put it, no one likes to have his or her parade pissed on. And this in part is the problem with an identity tied to disability. As I see it, there is nothing wrong with being disabled and I mean this in the broadest sense of the term. When I see some like Roy’s daughter I see a hard assed survivor utilizing her cognitive abilities as best she can. When I see a man or woman who is blind with a guide dog, I think that is a cool form of adaptation. When I see a quadriplegic in a power wheelchair I think how fast and how far can they go. When I see deaf people signing I admire the beauty and grace of a language I do not know. I see varying forms of identity that is tied in some way to their unique abilities. All I see are endless possibilities. To me this is an identity all people with a disability share.

Identity and Disability

2011-09-21T10:42:00.000-07:00

The below was inspired by Rachel Cohen-Rottenberg who maintains a blog I read on a regular basis entitled Journeys with Autism.If you have not read her work I urge you to visit her blog. Rachel asked me to write a guest post in September. I chose the topic, identity because it is a central concept in anthropology and key to social progress for people with a disability. Please note I finished the post a full nine days before the end of the month.

Identity and Disability

I am a crippled man. I am a proud man. Hear me roar. Yes, I am ripping off the 1970s women’s movement song “I am Woman” by Helen Reddy and Ray Burton. Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis. I never think about a cure to spinal cord injury, walking or running. Such thoughts are for others; people who without question accept that walking is the only means of locomotion. As a result of my paralysis and wheelchair use I am a member of a minority group even if the Supreme Court does not agree with me. I am often asked about cure, about walking, about wheelchair access, about sex, about work, about family. These questions make one thing clear--my privacy is not respected. I am not respected. I have a stigmatized identity. Hence, well meaning people ask, “Wouldn’t you want to be cured?”, or “Wouldn’t your life be easier if you were not paralyzed?” These types of questions are so far off base it boggles my mind. The people that ask me these questions never think why. Why is life with a disability such as paralysis difficult? The answer is obvious to people with a disability. Our physical and social environment are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.

I am intimately familiar with the concept of identity. Identity is of central importance to anthropologists. It is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others—non disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem—one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability.

So why is identity so important to people with a disability? Disability identity is important because it will lead to social debate and careful consideration of disability well beyond the narrow way it is currently perceived. In the Foreword to Simi Linton’s ground-breaking text Claiming Disability Michael Berube noted:

"If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the “humanities”. And if we do not imagine “disability” as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy."

Like most people, disabled and non disabled, I did not always think this way. Disability is afterall the only minority group you can join—and not by choice. What connects all people with disabilities is a shared identity and the routine and unacknowledged violation of our civil rights. Disability scholars call the prejudice people with disabilities encounter ableism. While we people with a disability certainly understand ableism is a form of oppression when we confront others and assert ourselves we are classified as bitter. I am routinely told I have a “chip on my shoulder”. When told this I sarcastically agree—hence I identify myself as a bad cripple—one not afraid to assert my civil rights. If this puts a chip on my shoulder than I plead guilty. This takes some guts, we people with a disability are expected to be subservient, content with what society is willing to dole out for us. When we do not adhere to our prescribed role our presence is not wanted. The type of disability is not relevant—it is a variation on a single belief that is deeply ingrained in schools, businesses and our culture. One person has railed:

"People have a great deal of prejudice about autism& other developmental disabilities. I’ve been bullied out of activities and classes because I am autistic; I’ve been discouraged from even trying others. People and professionals who are familiar with autism but unfamiliar with me assume that I am less capable of many things I am—usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks—having to prove my humanity & my individuality over and over and over again is exhausting (Timetolisten.blogspot,com)."

I would venture to say every person with a disability can relate to the quotation above. I have repeatedly been lauded for the ordinary and told I am amazing. Conversely, I have been told I cannot do many ordinary things. This is nothing short of dehumanizing. It is also why all people with a disability should embrace an identity closely linked to disability with one proviso: disability identity is not defined by a given disabling condition or body centered feature. Identification here is not a medical diagnosis or arbitrary label. With an identity tied to disability it is logical to conclude our experiences are similar. The prejudice we encounter socially sanctioned and deadly. With this realization I shudder to think of how many dreams and ambitions have been crushed. No one would tell a non-disabled child he or she cannot do something. That is an educational anathema. But this is exactly what happens to people with a disability. Frankly, I have had it. I will not tolerate being told what I can and cannot do. I know with an identity tied to disability, by being proud and disabled, I can resist and thrive.

Handicap Parking: Passive Aggressive

2011-09-17T12:58:00.000-07:00

I have written about handicap parking in the past and the subject always generates a strong response. Since I got sick a year ago I have resumed using handicap parking. Frankly, I need handicap parking now. When I first started getting up and around I could not go too far without becoming short of breath. Yes, I was in that bad of shape. In recent weeks I have been wondering why I still use handicap parking. I am constantly infuriated with those who use handicap parking. The vast majority that use these much sought after spots appears to have no reason for using them. But I know all too well appearances can be deceiving. A double or single amputee could walk out of his or her car and I would have no clue they were an amputee. Of course the population that garners virtually all handicap spots are elderly. More power to them as there is no question that the elderly struggle with mobility. Of course this does not stop my son from calling handicap parking old people parking. His tone is humorous but has an edge I do not like. I never comment about any use of handicap parking spots. I know the little blue placards in NY and other states are grossly abused. I know this angers the police. Heck, it angers me! However, I am resigned to rampant abuse. My only wish is doctors that sign off on handicapped parking permits would put more thought into the process.

I was thinking about why I get angry about handicapped parking. I realized after some reflection only two things bother me. In the winter handicap parking is where they pile the snow after a storm. I know for a week or two handicapped parking will be useless. Nothing can be done about this. Annoying yes but very temporary inconvenience. But what really gets me are shopping carts. Yes, shopping carts. Handicap parking is where shoppers abandon their carts. I see this every time I go out. Abandoned carts often block one from parking or make it impossible to get out of the car. Much to my son's chagrin I have developed a passive aggressive mechanism for dealing with carts. I will park in the one cart free spot, get out of my car and push the cart or carts into non handicap parking spots. I get a giggle out of this every time. How petty I am. My son thinks I am acting out in a bizarre or useless manner. He is mostly correct. However once in a while someone will ask why I am moving the carts where they will obviously block a spot. I tell them I found the carts in handicap parking and they were in the way. A few people will get the message I am seeking to deliver anonymously. In sharp contrast, some people actually get mad at me--not often for sure. Most people, like my son, think it is odd behavior. I suppose it is. I also suppose it is petty. But it still gives me a sense of satisfaction. I am convinced people who are observant will get the message I am seeking to deliver. And that is all I am trying to do--get a select few people to think. Handicapped parking is a ubiquitous aspect of every day life few give any thought. We people with a disability think about the violation of handicapped parking and find it unacceptable. It is a minor inconvenience that indicates a much larger problem. The routine violation of our civil rights. Handicapped parking is very minor but indicative of a much larger cultural problem.

The Problem with "Special"

2011-09-12T07:30:00.000-07:00

This summer I have been lucky enough to travel. I love to travel and thoroughly enjoy reaching my destination. However, I hate to fly. Domestic travel as most know is an absolutely miserable experience. Airlines, never known for outstanding customer service, have since 9/11 made flying a uniformly bad experience. Planes are fully booked, often dirty, and food absent. Airlines also nickle and dime customers to death: $2 for head phones, $25 for checked bags, $100 for an unaccompanied minor, $40 for the bulk head seat etc. Fees on top of fees ad to the cost of travel. None of this is new. Ask virtually anyone and they will have a miserable travel related story. Ask someone who uses a wheelchair and the stories become worse--much worse. Airlines have an institutional bias against people with a disability. This ingrained bias, bigotry really, has not changed in thirty years. What has changed is the law. The Air Carrier Access Act is firmly on the the side of people with a disability. No longer can I be banned from flying for no other reason than the fact I use a wheelchair. This does not in any way mean I am welcome or treated equally by airline employees. Indeed, I am routinely perceived as a "problem"--extra work for employees. And truth be told it does require more work to get me on a plane-not much but in an industry were time is limited and profit margins narrow I am perceived as a problem. When I fly I assume problems will abound. I am rarely if ever have a routine experience.

Aside from being perceived as extra labor, airlines I suspect resent giving passengers with disabilities "special" treatment. Special for me involves getting the bulkhead seat--never easy given the fact these seats are sold to any passenger willing to fork over $40 for a few extra inches of leg room. Special also means I am the first person on the plane and the very last person off the plane. I do mean last as in the very last passenger off the plane. Every time I fly I get to see the flight crew depart and cleaning crew come aboard while I wait for "trained personnel" to help me onto what the airlines call a straight back. This is a very narrow wheelchair that fits in the aisle of the plane. More often than not the trained personnel have no idea what they are doing. Each time I flew this summer multiple FAA regulations were violated assisting me off the plane. Waits for the trained personnel are common. I often get to sit on an empty plane waiting. Forget about making connecting flights in a reasonable amount of time. The special treatment I receive adds hours of time to my travel experience. Airlines do not care one iota. What is very clear is that my existence is of the lowest priority. First on last off--too bad. Cope with it. We will help you when we have assisted every other passenger--and I do mean every other passenger.

I am lumped by airlines into a group of special people. Children, elderly, and pets. Don't believe me? Check out any airline website. I am deemed a "passenger with special needs". If I have learned one thing in life it is that we Americans loath so called special people. We firmly adhere to a mythical sense that all people are equal. Those that are given special consideration are disliked. Being special is UnAmerican! This message is not subtle but overt. It extends well beyond air travel. At board of education meetings i have heard again and again why is so much money spent on special education. Regular kids suffer I am told. Need a lift on the bus? Why not just pay a taxi to take the child to school? Think of how much money we will save.

The thoughts above were prompted by an article in of all places the sports section of the NY Post. A tabloid not exactly known for quality. The article in question, Even TSA Employees are Scamming, by Phil Mushnick was published September 11. Mushnick was outraged that a TSA employee at Newark airport was willing to take passengers off the security line and directly to the front of the line. This was accomplished by sitting in a wheelchair. You see at most airports people with a disability do not wait on security lines. There is a special lane for people with disabilities. It is one of those rare instances using a wheelchair is an advantage. While I enjoy this advantage, especially when security lines are long, I think it is wrong. I should wait in line like everyone else. If I were standing in line I would be resentful of such special treatment. And this is the problem with special. I am not equal. So called special accommodations only lead to unequal treatment. Special buses, resource rooms in schools, handicapped seating--none of this fosters equality but instead segregation in a socially accepted form.

I will confess I have never seen the scam Mushnick described taking place at Newark. I would like to think I would make a complaint but upsetting the routine at airports is a very bad idea. Subservience is required when Americans travel. Humiliation rituals abound such as passing through security and passengers are expected to do as they are told by airline personnel. Rigid control is expected. Within these larger cultural parameters there is no place for me. I am dubbed special--a categorization that is inherently problematic and unequal. It also reminds me of Kermit the Frog--one of my sons favorite characters on television when he was a little boy--who maintained it is not easy being green. I can only concur with this assessment.

Hurricane Irene Highlights Inequality

2011-09-03T07:54:00.000-07:00

Hurricane Irene blew into the New England area Saturday night or early Sunday morning. In comparison to others I fared well. No trees came down on my property. The only damaged trees were my favorites--two American Chestnuts. The only problem I had was a loss of power. The power went out at 3:30AM Sunday. The power did not come back on until late Thursday evening. Four full days without power sucks. No power means no water, flushing toilets or showers. By Thursday I was, how shall we say it, ripe. No computer too hence no work. What I experienced was a minor inconvenience. The last four days made me realize just how utterly dependent we are on electricity. I also realized how lucky I was--I did not need to evacuate my home and go to a hurricane shelter. If I had to do this I would have been in deep trouble. I cannot go to any shelter--I need a shelter that is accessible. By accessible I mean a building I can enter. I would need a bathroom I can get in and a cot I can transfer on. Pretty basic. Not so fast. It is not so basic.

Thanks to two excellent posts by Not Dead Yet on August 29 and 31, I was deeply troubled to learn, but hardly surprised, that many New York City shelters in low lying areas were not accessible. No mainstream media outlet, television news or newspaper, picked up this story. Two news outlets, Public News Service and NY1, did short stories. That was it. This shocks me. We had full media saturation about the hurricane that was damn near hysterical. The lack of accessible shelters has been detailed by Not Dead Yet. I urge readers to read what Stephen Drake, Susan Dooha and Paul Timmons wrote on August 29 and 31. Timmons has experience with disaster relief, Dooha is the Executive director of the Center for Independence of the Disabled New York, and Drake is a research analyst at Not Dead Yet. These people know what they are talking about. Timmons and Dooha have tried to make access issues a concern for FEMA and VOAD. Much money has been spent, many meetings have been held and yet virtually nothing has been accomplished. This is what Dooha witnessed:

"I went to 6 shelters in Manhattan, Brooklyn and Queens serving people in Red Hook, Fort Green, Long Island City and Lower Manhattan. I found: dangerous ramps leading to locked doors; food up flights of stairs that people with disabilities would not be able to climb; inaccessible bathrooms; cots that would be unusable by people using wheelchairs; lack of volunteers trained to deal with these issues; reliance on elevators (where they existed) that would go out in the event of a power outage; accessibility signage leading to locked doors; reliance on inaccessible transportation (school buses) etc."

The gross lack of access described by Dooha is not acceptable. Need I remind everyone of the disgraceful response to Hurricane Katrina? And what about of 9/11? We have had ten years to prepare for a disaster and somehow shelters and transportation remain inaccessible. Timmons sourly noted: "The fact there's somebody in a wheelchair sitting in on the meetings makes everybody feel all warm and fuzzy. But almost always, any attention to people with disabilities stops there." There really is only one conclusion to be reached--in a very real and practical way the powers that be, FEMA and the Red Cross, do not value the lives of people with disabilities. We are expendable--and acceptable loss of life. To quote Timmons again "The Overlords of the emergency management community have shown to an indisputable certainty that they don't really care whether we live or die.
And ya know what? As I wrote that last line, it occurred to me: it's not entirely accurate. The reality is...they're actually trying to kill us."

Timmons words are inflammatory. I doubt FEMA is trying to kill us deliberately. Yet FEMAs total disregard to access will indeed lead to the deaths of people with disabilities. This has taken place in the past and based on what I have read is still very much a deadly problem--one that need not exist. But exist it does. Hence I live with the sober realization that if a natural disaster took place tomorrow I would be on my own. My odds of survival would be dim at best. This makes me angry and depressed. It is a not so subtle reminder I am far from equal to those that are bipedal.

Religion and Disability

2011-08-27T07:01:00.000-07:00

I am a recovering Irish Catholic. I state this with the same reverence alcoholics state they are in recovery. I value and abhor my traditional upbringing in a private but deeply religious family. I find my Catholic childhood ironic in that I cannot get the church out of my brain. Thus I may have left the Church long ago but the Church has not left me. Regardless of my views of the Church, it was and remains a great training ground for cultural anthropologists. The Catholic Church would like to believe it has a monopoly on all symbols we consider holy in the Christian world. One cannot go to Church and be unaware of symbolism and its power. I have turned this awareness away from the plethora of Catholic symbols such as the cross or rosary beads to an academic analysis of cultural symbolism particularly as it relates to disability studies. Cultural anthropologists have been fascinated by the cultural symbolism produced by a myriad of cultures—symbols that members often take for granted. This unwitting acceptance is evident in all organized religions and within the realm of the disability experience. We simply accept the cross and crown of thorns as the symbolic example of Christ’s suffering. Likewise we accept without question that a wheelchair such as the one I use is the ultimate symbol of weakness and dependence. We all know without thought that walking is normal and wheelchair use is not. In this essay I want to explore the symbols associated with disability, its public perception and unfortunate exclusion of people with a disability.

Let me begin with a forceful and hard to fathom conviction that is central to my core: I reject any suggestion that my disability and consequent wheelchair use makes me less of a person. This is not just wrong but hopelessly antiquated thinking. For me, and millions of other paralyzed people, a wheelchair is a powerful form of human adaptation, a technological marvel that enhances life. Some may think this is self-evident. If I have learned one thing in my 30 years of life as a paralyzed person it is that most people I come across think my life is either a tragedy, grossly diminished because I cannot walk or that I am some sort of super hero because I can do what everyone else takes for granted—education, marriage, family, career etc. In terms of religious symbolism disability is often associated with sin. An imperfect body, and a disabled person certainly has a flawed body, is unholy. Cure fits prominently into this discourse a well. Jesus healed the sick, cured the blind, and made the crippled walk again. The message here is not subtle—perfect bodies, non disabled bodies indicate a good spirit. Hence disabled bodies are inherently and morally flawed. We people with a disability are “God’s special children”. The first time I heard this phrase I was in seventh grade. By that time it was obvious I had a severe neurological impairment. I was in Catholic school when one of the nuns that taught me told me I did not have to do any homework. Confused, I asked why. She replied that I was “one of God’s special children and that homework was no longer necessary”. Not sure what to make of this I returned home and needled my siblings that I had no homework. My mother looked at me curiously and asked why. I told her what the nun had said to me. I could see the steam emerge from her ears and her face flush with anger. She told me she was going out and that she would be back in an hour. True to her word, she returned and told me I would be starting public school the next morning.
I learned a life lesson from my mother that has enabled me to resist any notion I was special—a word often used to describe children with a disability. Special is a buzz-word with a different meaning in religion. No care or thought is given to the fact children and the adults they become are socially isolated, encounter numerous architectural obstacles when they desire to enter a church or that they are virtually locked out of accessing adequate health insurance. In place of a humane social response people with physical and cognitive deficits are reduced to the notion of virtuous suffering. They are faced with trials of character and obedience to God. This leaves the person with a disability two unenviable choices—suffer in silence or search out a miraculous cure to a given disability. What is not an option is a “normal” life. Nancy L. Eisland has written
Living with a disability is difficult. Acknowledging this difficulty is not a defeat, I have learned, but a hard-won accomplishment in learning to live life that is not disabled. The difficulty for people with disabilities has two parts really—living with our ordinary, but difficult lives, and changing structures, beliefs, and attitudes that prevent us from living ordinarily”. (Eisland 1994:13)

The beauty and power of religion, what draws people and gives them comfort, is its unchanging nature. This timelessness is not good for people with a disability. Indeed, since I have been paralyzed I have routine and overwhelmingly negative experiences with the Catholic Church. In fact I would go as far as to state the Church is a hostile social environment for any person that uses a wheelchair. I endure some form of social harassment every time I set foot into a church. This can be as simple as locked side entrances to the total absence of ramps. Parishioners are not better. I have been told if I prayed harder I would be cured. Little old ladies bless my poor crippled body. Old men that can barely walk want to push my wheelchair. Priests and nuns can be nothing short of cruel. Before I was married I was interviewed by a priest who openly questioned my ability to father a child—it was the purpose of the union of man and wife. Nuns look askance at my body and seek to place me with the elderly and cognitively disabled in a “special” section. This location is always obscure and out of sight of other parishioners as our mere presence is too upsetting for others. What I have learned is to avoid the Church at all costs. A sentiment my son expressed to me when he was a little boy. Despite my problems with the Church I was determined to raise him Catholic. This effort had less to do with religion than the larger positive messages the Catholic Church has fostered since its inception. One Sunday after Church my son announced he was no longer going to go to church. I thought he simply found church boring as I had as a boy. But what he said startled me: “Dad, I don’t want to ever go to church because people are mean to you and it is full of bad people”. I was stunned. What I had intended to teach my son had been perverted into something that was, well, anti-Christian.

I know people mean well. No one wakes up and thinks I am going to be a bigot against people with a disability. Regardless of their meaning or intent the message sent is indeed bad and the social implications deadly for they extend beyond the steps of the Church. Claire Roy has passionately written:

“I hate the whole idea and I hate hearing it come out of people's mouth, because I know they don't get it and I know it gives them comfort to think that something as completely "normal" and frequent as disability and the huge challenges families face in dealing with it is in "God's hands" and not in theirs, plain and simple. It's easy to put God in charge because then you don't have to be. You don't have to make your business or school accessible, or you don't have to get over how my disabled kid looks, or deal with them at all, if God is taking care of everything, right? Once that miracle hits your home, all your troubles will be forgotten! I have not yet met anyone with a miraculous ending...other than the fact that they carry on and actually find some grace in the matter. There's your miracle.” (Roy September 13, 2010)

The real social tragedy when it comes to the Church and religion is how unnecessary the exclusion is of people with a disability. While my experiences with the Church is only negative within the context of a hospital it is the exact opposite. I have found hospital chaplains to be open minded, accepting and socially skilled individuals. These men are not afraid to rock the boat, to do mundane tasks, or whatever is necessary to help a person in need. What I find amazing about hospital chaplains is they do what I wish a parish priest did—provide spiritual guidance to people in need. This would include patients, family members and staff. Whenever I am ready to denounce all organized religion I think of my many positive experience with hospital chaplains. While non denominational the people I have met most often are Catholic priests. They are uniformly good people. But more than that they get disability, infirmity, old age, and death. They are a soothing helpful presence. Perhaps we should direct these men to the local parish.

Finding a New Normal

2011-08-11T06:16:00.000-07:00

Next month it will be a year since I found the huge grossly infected wound on my hip. I have been humbled by the experience. In many ways my confidence was shattered. I had not been sick much less dependent upon others since I was a child. It was a terrible experience. I did my best but in retrospect I have many regrets and wracked by guilt (I am after all Catholic). I wish I had handled myself differently. However the past is the past and looking back accomplishes little. What I am most concerned with is finding what I have termed a new normal. While I have resumed my ordinary life I have done so with extreme caution. I check my skin at least once a day. I push up and relieve pressure on my skin frequently--at least every ten minutes. When I start teaching again I am sure students will think I have some sort of weird psychological tick. I know I cannot endure another serious wound. Thus when you remove all other variables I am now driven by fear--fear of another wound. This thought permeates everything I do. I hope my fear will go away but am not sure it will nor do I want it to vanish. Fear will keep me healthy.

What boggles my mind and directly causes me to remain fearful is the unknown. I still have no idea how I developed my wound. More than anything else this worries me. Could I be subject to a recurrence? The answer to this question is a simple yes. My skin is not as tough as it once was, especially at the wound site. This is a well established medical fact. To compensate I get off my skin, i.e. lay down, several times a day for hours. I have not done this since I was paralyzed in 1978. I despise stopping my day in this way. I am always aware of how long I have been sitting, planning when I can lay down. If I am up most of the day I am sure to lay down for an extended period the next day. Again, I despise this. I despise the fact my very fancy clinitron bed is still in my living room. I have plans to move it to my bedroom next month. And here is the problem. Skin care is trial and error. Sounds straight forward. No it is not. An error, just love the euphemism, could mean a day, week, month or months in bed. A so called error is a disaster. Hence my extreme caution. Yes, I could sit up from the time I wake until the time I go to bed at night some 15 hours later. But doing that at this stage is simply fool hardy.

Here is what keeps me up at night--will I ever return to norma? That is will I wake up, check my skin, get in my wheelchair and not think about my skin. I did this for 30 plus years. Sure I had nicks and cuts along the way but nothing that sent me to a doctor. I had never had a serious wound. Not one. I am surely not the only aging paralyzed guy living in America. I know I am not the only guy (or gal) who has developed and healed a severe wound. In fact I learned the most common would for a person paralyzed 30 years or more with no history of skin problems is a stage four wound. Go figure.

The above thoughts were prompted by an article I read in the July issue of New Mobility. The article in question "If I Only Knew Then..." was written by man who is my age, was paralyzed over 30 years ago, and had no history of wounds. Like me, he developed a stage four wound. As is typical of New Mobility, the article was positive and hopeful. Nary a bad word is ever printed in New Mobility, the happy paper for paralyzed people. They also found one of the few paralyzed people that was employed (the author was a lawyer), had great health insurance, and the employer was happy to make reasonable accommodations. I do not live in this fantasy land but multiple good points were made. Pressure relief is important. As we age so too does our skin. Hence we need to be more not less cautious as we age with a spinal cord injury. Avoid shear from clothing. Most importantly be willing to modify our life style. It is this last point that is most important. How many of us, myself included, are willing to modify our life style? Not many. I have done so. I do not like it but realize I have no other choice. When worried I try and remind myself where I was a mere three months ago. I was doing very little. I could not have gone to Seattle like I did earlier this month. My strength has returned to normal and my endurance is getting better daily. Six months ago sitting for a few hours was physically exhausting and transfers were an adventure. Today, I transfer as I once did and sitting is not tiring at all. In short, I have made giant strides physically. It is the emotional baggage that I have yet to overcome. But overcome I will. I know despite my fear, very day is better. Every day I get closer to where i was one year ago. Every day I inch closer to what once passed for normal.

Jerry Fucking Lewis!

2011-08-04T06:18:00.000-07:00

Last night before I went to bed I was browsing the news online when I came across the headline "Jerry Lewis No Longer MDA National Chairman". This news delighted me. I do not mention Lewis much on this blog. Suffice it to say in spite of all the money he raised on behalf of the MDA, I consider him one of the foremost destructive forces in terms of disability rights. Even as child I found the MDA telethon, all telethons, tawdry. The MDA telethon was just the worst of the worst. The cloying use of pity, the pathetic tear jerking song Lewis sang at the end of the telethon always seemed antiquated and wrong. I suspect what bothered me was I knew he was using children with disabilities. The message was clear: life with a disability is a fate worse than death. You people, Lewis implored, meaning those fortunate enough to live life without a disability, should give money to the pathetic creatures on stage. This worked for decades. Pity as a fundraising technique simply works. It still does even though telethons are now largely a thing of the past.

Thanks to people like Mike Ervin and Cris Mathews in Chicago, Laura Hershey in Denver and Harriet McBryde Johnson in Charleston protests against the MDA telethon and Lewis in particular spread. People with disabilities had enough. Offensive comments made by Lewis over the years began to be seen for what they were--deeply hurtful and bigoted. Still, the MDA resisted and now 21 years after the ADA was passed has ever so slowly begun to separate themselves from Lewis. Hopefully 2011 will be the last year of the abridged version of the MDA telethon. Lewis' resignation from the MDA can only be perceived as a good thing. I suspect his departure from the MDA was unpleasant, perhaps forced. I have no inside information in this regard but the carefully worded and terse announcement by the MDA provided no explanation for why Lewis will not appear on the upcoming telethon. According to MDA Chairman of the Board R. Rodney Howell Lewis "will not be appearing on the telethon" and "we will not be replacing him as MDA national chairman".

I am sure I will get more than a few nasty emails in response to the title of this post and critical words about Lewis. For those unhappy with me I suggest reading Harriet McBryde John's wonderfully witty chapter in her book Too Late To Die Young about her protest of the MDA telethon (Honk if You Hate Telethons). I will end with a quote from McBryde Johnson that highlights exactly why the telethon was so destructive:

"My mother thought telethons were tacky. She said no when we were asked to appear. She tried to distance me from them, but my own eyes told me the MDA thon was about people like me... The poster children looked just like us: we were all literally the same flesh... Together in the crip ghetto, my friends and I watched the annual parade of our little dopplegangers being publicly sentenced to death and saw one another through with gallows humor. Later, having moved on to the mainstream world, I wanted to go to law school, qualify for scholarships, get a job and car loan, start a business. But dying children aren't allowed to do such things; they can't be trusted to fulfill their obligations." Yes, the ordinary is beyond the crippled. And this my friends is why the fact Jerry Lewis is no longer associated with the MDA is a positive development.

Houston We have a Problem: Our Social Failure

2011-08-02T11:48:00.000-07:00

Sorry for the lack of posts in July. I am afraid August may be just as slow. As already mentioned, I am loving my return to a routine life. Last month I made two trips. First to Vermont where I volunteered at the Vermont 100 (a fund raiser for Vermont Adaptive Ski and Sports). My big trip was out west to Seattle for the Seattle Children's 7th Annual Pediatric Bioethics Conference. I came away from the Seattle conference energized and depressed. Our health care system is hopelessly screwed up--not exactly front page news I know. At the conference there seemed to be united agreement on this as well as an utter lack of agreement on how to fix the health system. But it is heartening to know there are many MDs and PhDs out there that are just as disturbed as I am. Unfortunately, nothing is being done in the here and now to fix the myriad of problems doctors and people with disabilities encounter. United we could spearhead change. On the flight home I dreamed of working with caring compassionate doctors who want to empower and embrace the goals of all people, those with and without disabilities--social equality and equal access to health care. We people with disabilities, I thought, have much experience with the health care system and routinely get inferior care. Surely, working from the inside and outside of the medical community we could foster real change.

The above I have concluded is nothing but a pipe dream. Despite the obvious care and concern exhibited by the many fine physicians I met, they are an economic world apart from many of the people with disabilities they treat. As a group, MDs are well compensated and wealthy. As a group, people with a disability are unemployed in staggering numbers and often have poor health insurance--if any at all. The disparities are startling. This reminded yet again of the true social problems people with a disability have yet to overcome due to decades of socially accepted exclusion. In a mere forty years since our attitudes toward disability began to change and yet the only thing we have accomplished is a series of laws such as the ADA that are routinely ignored. This thought too came to mind as I flew on a commercial jet and was treated as poorly as expected in spite of many laws that supposedly make me equal. And yes airlines treat everyone poorly however I doubt anyone walking is ever forced to wait an hour to get off the plane after the last passenger has left. The point I am trying to stress here is that when it comes to disability we seem to always be the first to suffer. Suffer. An apt word given what is going on with the economy. We appear to have dodged what the media has hysterically called "Financial Armageddon". The scary part to me is that among people with a disability I am well off. That is I have insurance, bad insurance but insurance nonetheless, a supportive family, my own home and work. The people I worry about are those that have no voice such as those in a group home or those dependent upon social security and state support. Simply put, state and federal agencies cannot serve the population they were created to support--the elderly, disabled and poor. This troika is suffering in the truest sense of the word. The budget cuts hurt this population more than any other. Worse yet, no one cares. These people, my people, have no lobbyists. That have no power.

Let's take New York and California as examples. Since 2008 billions of dollars have been slashed from budgets that are set up to assist people with disabilities, elderly and the poor in California. $3 billion has been cut from Medi-Cal that insured about 7.5 million Californians. $4.6 billion was cut from Supplemental Security Income Program that supports 13 million people with little or no income. For people with a disability such as a spinal cord injury, a quadriplegic for instance, these cuts mean the difference between living at home and being in a nursing home. Those that end up in a nursing home rarely escape such institutions. To me, this is suffering--being forced from your home and family to a nursing home. To me, this is the sort of cut that is socially and morally unacceptable.

In New York, the NY Times is continuing its wonderful examination of group homes in the state of New York. In "Reaping Millions in Nonprofit Care for Disabled" the NY Times details how two men have become wealthy running a Medicaid financed non profit organization serving people with developmental disabilities. In addition to salaries that neared one million dollars each man had luxury cars paid for with public money. When their children went to college they passed on the tuition bill to their non profit group. While this was taking place the waiting list for group homes in the state remained long--hopelessly long in some cases. Families as a result suffered. There it is again, that pesky word suffer.

What I want to know is when will it end? How much can we take away from those in the most need? When will those being hurt, the suffering masses, rise up? I wish I had answers to these questions but I do not. I do know the situation is grim. I know it is unacceptable. So the issue is when and where will someone or some group in this country say no. No you cannot cut the budget. Lives are at stake. I am sure it will happen--it is not an if but a when. This is the day I look forward to.

Life is Sweet

2011-07-13T06:38:00.001-07:00

Dedicated readers will have noted July has been a slow month for me in terms of posts. Do I have an excuse? Sort of. I am very busy enjoying life. By life, I mean ordinary, or what was once routine. Sure I am still extremely cautious with skin care. -I get off my skin a few times a day for a couple of hours. However, I am back to doing what I once enjoyed. Nothing seems to upset me. I swear it is like I took a happy pill. I enjoy grocery chopping. I enjoy running errands. I love driving my car. I am kayaking and thoroughly enjoying the Hudson River Estuary. Last weekend I saw a massive bald eagle I admired from afar. I gave a lunch talk this week at the Hastings Center about predictive testing for Alzheimer's. The discussion that followed my short talk was stimulating in the extreme. This weekend I am going to Vermont to volunteer for an ultra marathon race called the VT 100. Better yet, I am going to Seattle next week. I am giving a retrospective paper about the past, present and future of health care. I will no doubt spend much of my time eating my way through Pike Place Market. I will catch up with friends who live in the area and meet new people. In short, my life has returned to normal or what passes for normal. I am a happy man. The point I am trying to make is that you will have to pardon the lack of posts for a little while longer. I am just too content with life to sit at my computer. I do plan on putting up a retrospective piece in a few days based on the paper I will deliver in Seattle. I have been working hard on this. So please forgive me and get outside and do something fun. Life is grand and I am enjoying every minute of it.

End of Life Discussions

2011-06-29T06:08:00.000-07:00

My email led me to read two connected but very different responses to an impossible conundrum. Here I refer to the increasing probability if not certainty that in the near future it will be possible to test people for Alzheimer's Disease before symptoms of dementia have developed. That is people who are clear and lucid will be told that they are going to develop dementia. The progress of Alzheimer's can be slowed with medication but no cure exists. What then is the point of the new test to predict Alzheimer's? According to researchers and clinicians early detection could help patients and their families to prepare for the future. What exactly do these plans entail? To me the obvious reaction is simple--many would choose not to live. This scares me--it truly has me worried. The implications to vulnerable populations, meaning the elderly and disabled, are potentially dangerous.

According to an article in Time, "As Tests to Predict Alzheimer's Emerge, So May Debates Over Right to Die", by Eric Parens and Josephine Johnston, both scholars at the Hastings Center note:

"None of us can know what sort of slippery slope that request [to die] might put our society on; one day we're giving assistance in dying to Alzheimer's sufferers, the next we're doing the same for people who are depressed or disabled or poor or just old. It is vitally important for us to explore all the reasons against allowing or assisting Alzheimer's patients to end their lives. And it is equally important to begin to explore the reasons on the other side. It is time to listen to and take seriously those people who, upon seeing their own parents spend years, even decades, suffering with Alzheimer's, say that they refuse to expose their partner or children to the same. We cannot ignore competent people who say they would rather die than no longer recognize their children or the partner with whom they built a life. Nor should we dismiss those who say that they can't themselves afford to pay for years of nursing home care, don't want their children saddled with that expense, or would rather the money be used for their grandchildren's education".

The discussion Parens and Johnston want to see begin has not taken place in the United States. I agree a discussion must take place--the sooner the better. However, unlike Parens and Johnston I am wary of such a debate. I am convinced how it will end before it has started--out of the goodness of our souls and with great compassion we will end the lives of those with Alzheimer's. Alzheimer's is a devastating disease that strikes fear into the hearts of those it will affect as well as their families. Alzheimer's destroys what we American's value the most-cognition and personal autonomy. Self determination is slowly and inevitably lost to an individual. It is for most the worst case scenario for the end of life. How we will respond to a discussion is a forgone conclusion in my mind. I am not just in a dark mood. For on the same day I read the Time article by Parens and Johnston I also read a blog post by Stephen Drake of Not Dead Yet. Entitled, "Netherlands: One-third of Doctors Willing to Euthanize Patients with Early Dementia", I was not the least bit surprised that one-third of doctors were willing to end the life of those suffering from early dementia associated with Alzheimer's. Yes, one in three doctors would end the life of a person with dementia. 33% of doctors would end the life of a person with dementia. Think about this statistic. What sort of debate are we really about to enter in here in the USA? I would suggest it is not a debate but rather the search for the justification to end the life of people with dementia. The Dutch have already made such a decision described by the press as a "minority" of doctors are willing to help patients die. This statement is correct. However, it still leaves one in three doctors willing to kill their patient. I do not like these odds--indeed, these odds scare me to the very core.

To me, we are about to start asking all the wrong questions. Instead of wondering if we should be allowing people with Alzheimer's to die I would posit we should be asking how can we empower such people. How can we insure families receive appropriate support, how can we insure families do not incur great debt caring for a loved one. What can people who have Alzheimer's teach us about life? I may appear naive in positing these observations. However, I am not naive. I saw my father experience dementia at the end of his life. It broke my heart and was devastating but at no point did I wish he or his doctors would prematurely end his life. In looking back on those hard days I am intensely gratified for what I was able to do for him. He and my mother cared for me when I was a morbidly sick child and in a very small way I was able to reciprocate their efforts.

Life is not easy nor are end of life issues. I am perplexed why we do not have a vibrant hospice movement in the USA. Simply put we do not often get to choose the way we die. When we start making these sorts of decisions for others as Parens and Johnston pointed out we are potentially on our way to a slippery slope. I know a good bit about this concern as I have seen that slippery slope first hand. I am old enough now to comment on the history of medical care and how our social perceptions dictate care. For example, in the late 1970s surviving a high level spinal cord injury was highly unusual. During my rehabilitation I did not see any quadriplegics--certainly no respirator dependent quadriplegics. I never even heard of anyone surviving such an injury. As I have written before people with high level spinal cord injuries were perceived to have no quality of life. Doctors decided to let nature take its course. That is these men and women were allowed to die. The first quadriplegic I met in college had a C-8 level of injury. One night when he told me "one more inch and I would be dead". Back then you see C-8 was an unwritten cut off mark for survival. This leads me to ask what will become the unofficial cut off mark for survival with Alzheimer's? When and under what circumstances do we decide life is not worth living? Again, this scares me, truly frightens me. You see about once a year some stranger will come up to me and without prompting state "I would rather be dead than use a wheelchair'.

Let us be very clear about the so called debate we are going to enter into. The decision has already been made before we even start the discussion. The variables up for debate with regard to Alzheimer's touch upon what we American's value the most--autonomy. Autonomy however is fluid and ever changing. None of us are ever autonomous beings. We are all in some ways dependent upon others. This dependence could be a job or family. But autonomous beings we are not. So let's no kid ourselves. The Dutch have proved in advance that about on third of doctors have no qualms about killing people with Alzheimer's type dementia. I see no reason to think Americans doctors will be any different. If this does not scare you I will be scared for you.

Bitter Truth and Gritty Reality

2011-06-25T11:00:00.000-07:00

A friend sent me a link to an article in the Huffington Post by Timothy Shriver, Chairman of the Special Olympics and long time advocate for those with intellectual disabilities. In part Shriver was inspired to write because of a series of articles in the New York Times and specifically the death of Jonathan Carey. Carey was a 14 year old man with autism that died in the care of the State of New York. The state did not kill Carey but sure did play a significant role in his needless and tragic death. What has struck me about the story of Carey's death is the lack of a response. Just another person with a disability that is dead. Ho hum. This makes for filler on newscasts and newspapers. Worse yet, Carey is the tip of the iceberg according to Shriver--and he is sadly correct. The death of people with a disability is somehow seen not as tragic but a release from their suffering. This makes the general public feel good but scares me to death. It is indicative of a social, governmental and health care failure. This has led Shriver to postulate:

"How is it possible that more than three decades after the United States began to desegregate schools for people with intellectual disabilities, more than two decades after the United States passed the Americans with Disabilities Act, and five years after the United Nations adopted the Convention on the Rights of Persons with Disabilities, a massive dignity deficit remains? The bitter truth is that subtle but persistent discrimination against people with intellectual disabilities remains rampant around the world. Sadly, most people still perceive a person with an intellectual disability as incapable of contributing to his community and thus, treat her as a liability that is all too easily ignored. The language we use is revealing: they are "in-valids", "retards", "dis-abled".
It's a short distance from that type of discrimination to abuse and even murder, but it's an equally short distance from empowerment to dignity.

The phrase "out of sight out of mind" comes to mind. We shunt off people with disabilities to group homes, nursing homes, resource rooms at school, special seating at stadiums and in mass transportation. This sort of segregation is not only allowed but socially sanctioned. It is perfectly legal. It is also wrong and destroys the lives of millions of people with a disability. The disability does not matter--the social isolation and intolerance is simply wrong. What I want to know is when will this end? How many more people need to die before we as a society will not tolerate such abuses?

Grim News on Both Sides of the Atlantic

2011-06-23T11:11:00.001-07:00

Every evening I look out my living room windows I consider myself an exceedingly lucky man. I have much to be thankful for. My life is rapidly resembling what it was before my wound last Fall. My son is home from college and we have spent some real quality time together. My family was and remains supportive. All this is quite unusual for a person with a disability. The ordinary is too often not possible for people with a disability. When I openly state this to others I know they look at me and roll their eyes. Come on they say, things are not that bad. They are correct. For me life is sweet. Life is not so sweet for my fellows with a disability. How do I know this? It does not take much thought on my part. Simply living life I come across needless obstacles large and small. I read about discrimination people with a disability encounter every day. For instance, a man was forced off an airplane by a pilot who deemed him a flight risk, a person with Down Syndrome was barred from boarding a flight, a couple being refused service in restaurant because they used wheelchairs, service dogs barred from schools, and the list of violations goes on and on. Little or nothing is done. Pilots get sent to sensitivity training, airlines are fined, and the cycle of civil rights violations endlessly repeats itself. Progress is a myth--or so I think on this gloomy day. I am gloomy not because of the weather but I have carefully read two well crafted and researched surveys. The results are troubling.

The surveys I refer to were conducted by Scope in the UK last May and the second by The ARC entitled "Still in the Shadows with Their Future Uncertain". Both surveys are readily available on line. Simply check out the Scope and ARC websites. The findings do not surprise me one iota.Let's start in the UK. According to Scope:

56% of people with a disability report they have experienced hostility, aggression, or violence from a stranger because of their impairment.
50% of people with a disability report experiencing weekly if not daily discrimination.
37% report people's attitude toward them have gotten worse over the past year.
41% of people without a a disability state they have never witnessed a person with a disability discriminated against.

The ARC survey is equally grim.

Fewer than one third of students with developmental or intellectual disabilities are fully included in regular classrooms in regular schools.
58% of parents report spending more than 40 hours per week providing support for their loved one.
46% of parents report that they have more care giving responsibilities than they can handle.
88% of parents report that they are suffering from physical fatigue, emotional stress, and guilt.
1 of 5 families report that someone in the family had to quit their job to stay at home to support the needs of their family member.
75% o families cannot afford or find after school activities, home care providers, or respite care.
62% of families report services utilized have been cut or eliminated.
43% of families report that schools have cut back on services.
32% of families report they are on the waiting list for government funded services with an average wait of more than five years.
A conservative estimate is that there are more than 1 million people waiting for services that will most likely never come.

I could provide many more on statistics but the above should suffice. Yes, the economy has affected the rich and poor in the the UK and USA. But I think these figures demonstrate a disproportionate number of people with disabilities, especially those with cognitive disabilities, have been profoundly hurt. Where I wonder is the outrage? We saw it spill over into the streets of London last month. Here in the USA the assault on disability support services does not even merit a spot on the national news or blurb in the newspaper. What is most troubling to me is that things are going to get far worse before they get better. Republicans led by Paul Ryan propose to cut more than $770 billion over the next ten years from the Medicaid program. Nationally, more than 700,000 people with cognitive disabilities are living with caregivers who are 60 years or older. Worse yet 73% of families report they do not have adequate savings for retirement.

Yes, the statistics are grim indeed. Beyond the numbers, even if you fudge them, what deeply bothers me is the most basic: no one cares. My neighbors do not care. Institutions do not care. I care. I care a lot. I lost sleep thinking about these surveys last night. The power went out for a while and I feared for the future. I feared not for myself but others--others I know who are socially and economically isolated. Who speaks for them? Who protects them? Our government? Do not make me laugh. Our so called representatives are a class apart from those that elect them to office. Sorry but I cannot provide any positive spin on the above. Grim, grim, grim.

Catching up: Me and Roy Campanella

2011-06-22T08:16:00.000-07:00

Wow, it has been a while since I have put up a post. No bad news to report here. I am just delighted to slowly be getting my life back. I am sitting up more and more each day. I am doing more each day. Things that were once a chore are now a delight. This week I did a major expedition to the grocery store. The first time I have done this mundane chore since September. My timing is perfect as my son is home from college and eating me out of house and home. No human can eat as much as a hungry 19 year old male. I am also getting out on the water--yes, I have been kayaking twice. I re outfitted the interior of my boat with mixed results. The good news is my skin is exceptionally well padded. The bad news is sitting on a roho cushion has severely limited my lateral stability. Skin cares comes first so I am hoping to adapt.

Speaking of adapting, I read a new biography about the life of Roy Campanella. Campanella was among the first black men to break the color barrier in baseball. The history of baseball, particularly integration, has always fascinated me. I have the utmost respect for the men that endured the grossest forms of bigotry to integrate baseball. How men such as Jackie Robison endured the abuse he took is beyond my comprehension. He was far from alone however. In fact, as the biography of Campanella points out there was a very good chance Campanella and not Robinson could have been the first black player in the major leagues. As much a this history is of interest to me I read the book for two reasons: to learn more about the relationship between Campanella and Robison, secondly, to learn about Campanella's post baseball life as a C 5-6 quadriplegic circa 1958. The book in question, Campy: The Two LIves of Roy Campanella by Neil Lanctot, will be of great interest to baseball historians. More than any other author to date he delves into the rocky relationship between Jackie Robinson and Campanella. This contribution is counter balanced by the poorly done chapters on Campenalla's spinal cord injury in a car crash and his life as a paralyzed man. This is a small part of the book (just three chapters of twenty) but undermines the solid scholarship that preceded it. The author, Lanctot, is a baseball historian and has written a previous book about negro league baseball. Thus to be fair he likely knows nothing about disability history. It appears as if his history of disability was limited to rehabilitation, specifically Howard Rusk and the famed Rusk Institute where Campanella was treated after his injury. The lack of attention to contextualizing Campanella's injury is not just unfortunate but leaves the reader with the unmistakable impression that a spinal cord injury is the worst possible thing that could happen to a human being. I certainly do not recommend the experience but what is ignored amid the obvious loss of movement is the social consequences of paralysis. This is where the author could have made an important contribution. Instead he accepted the dominant sociocultural belief--paralysis is a devastating physical injury. This is of course true but the real ramifications are social. Few if any people that walk can make this critically important leap in logic.

In the final three chapters of the biography of Campanella the author frames his spinal cord injury in an overwhelmingly negative tone. Negative even for a baseball book. Here are some examples:

"the almost superhuman recuperative powers that had brushed aside a blistered eye, dislocated thumb, and mangled hands now failed him. Hour after hour, he lay like a corpse, his legs useless, his arms could be extended but able to little else".

"He was what the doctors called a C5 C6 quadriplegic, an utterly dependent prisoner of the Stryker bed, with no control of his bowels or bladder".

"Just getting of the car into Salt Spray [his home]was an ordeal, involved a sliding board and the formidable hoisting skills of his now live in attendant".

"Outwardly, Roy appeared to be handling his plight rather admirably".

"Roy's triumphs--the TV shows, the benefit, the book--all helped keep the worrisome bad thoughts under control. But painful reminders of his past glories and current limitations were inescapable".

"The third Mrs. Campanella proved to be exactly what Roy needed. Thanks to her earlier nurse's training, she was unfazed by his quadriplegia and her attentiveness was nothing short of phenomenal".

"For all his undeniable mastery of the wheelchair he was still utterly dependent out of it. Each morning he began with a two hour ordeal of being lifted out of bed, bathed, shaved and dressed by an attendant whose devotion to the job was often suspect".

"Baseball, though a welcome respite as always, could only temporarily distract him from the day-to-day struggles of a quadriplegic's existence. His life remained limited to the bed or wheelchair, an especially cruel punishment for a man who had once loved nothing more than taking off at a moment's notice".

The above passages are only the most aggregious. I dislike critiquing authors for the books they did not write rather than for the book published. In this case I think the author missed a golden opportunity to delve into the history of disability. I do not expect it to be his focus but he does have the obligation as a historian to contextualize his work. He utterly failed to do this. Yes, he discussed Howard Rusk but did not bother to mention why Campanella never got a job in baseball, visited many stadiums that had no access at all and was often carried to his seat when he attended a game. Surely this compounded Campanella's perceived struggle. This struggle however was not with his body but rather society's failure to accommodate his difference. In this, Campanella shared much with his paralyzed peers who the author states he felt close to. But that is the extent of the analysis.

Maybe I am not being fair to the author--this is afterall a baseball book. But I think I have the right to offer my views as the sub title does refer to the so called "Two lives of Roy Campanella". It is this second life, one with paralysis that is exceptionally weak. It left me wondering what Campanella really struggled with--was it racism in baseball or paralysis. Obvious and striking parallels could have been made but were not. In short, to use a bad pun so rampantly used in sports, the author really missed the ball.

You Cannot Kill a Bad Idea: The Exoskeleton Lives

2011-06-08T11:12:00.000-07:00

Berkeley Bionics, the California based developer of the the exoskeleton I have railed against is in the news again. In a media release they have announced a partnership with ten of the nations leading rehabilitation centers. Yes, the exoskeleton is going to be used at ten leading centers for rehabilitation. I do not know whether to laugh or cry. I am sure Berkeley Bionics is thrilled--the stock worth will surely go up. The rehabilitation centers, some I admire, get a cool new toy to play with. This will draw newly paralyzed people and the skeptic in me wonders if this too is about profit margin. These ten rehabilitation centers will become the first "eLEGS Centers in the world". If there were audio to this blog you would hear an audible groan.

I am still stunned the exoskeleton gets heaped with such praise. It was one of CNN's top ten innovations, a Wired top ten gadget, and one of TIME's best inventions, all in 2010. The hype and media reception over this device puzzles me. I get the hype coming out of Berkeley Bionics--they are a corporation, a new one at that, trying to make a name for themselves. Thus I can dismiss words from Eythor Bender, CEO who thinks "We are on the verge of a new era of mobility for people with paralysis, using bionic exoskeletons -- first in rehabilitation centers -- and later making them available for home/personal use. We have been fortunate to team up with some of the most respected rehabilitation centers in the world, embarking on this important journey". The journey Bender refers to I would suggest is first and foremost one designed for profit. That profit starts with creating customers in rehabilitation centers too naive to understand the larger implications of the exoskeleton.

I do not blame newly minted paralyzed people with wanting to try out the exoskeleton. In theory it sounds like a good idea. I do not blame rehabilitation centers for trying this new technology out either. I would think there is some possible medical benefit to the exoskeleton, especially for a very young person with a spinal cord injury. And since I am an American, and we Americans love to play the blame game, where does the blame lye in the glorification of the exoskeleton? I place blame blame on American society at large for consistently refusing to perceive wheelchair use as anything less than a tragedy. Terms like "wheelchair bound" are used daily and we as a nation refuse to value people that use a wheelchair. We refuse to make our buildings accessible--courts, schools, stores, stadiums, airports, mass transportation centers, hospitals, universities, etc. I have encountered obstacles at each one of these places--not twenty years ago when the ADA was passed into law but today. What happens when I complain about the lack of access? I am deemed unreasonable, a bitter cripple who wishes he could walk. This line of reasoning makes me crazy. It misses the point so badly it would be laughable if it were no so common place. I am mad because we do not value access--it is not expected or desired. We only provide access because it is the law. That law, civil rights legislation called the ADA is begrudgingly adhered to but no one really cares. If people cared I would not encounter the needless architectural problems I come across daily.

Into the void of not caring about access for people with a disability, by access here I mean equal rights not only terms of architecture but civil rights, we waste valuable and limited resources with dubious inventions like the exoskeleton. This highlights a problem that has plagued the ADA--the notion of a "reasonable accommodation". The people who decide what is reasonable are not people with a disability--they are simply not in positions of power. Into this void steps (pun intended) the exoskeleton. Anyone who can walk thinks walking is the best form of locomotion. They are right it is what the human body was designed to do but I would argue a wheelchair is no less efficient means of motion. I do not know a single content person that uses a wheelchair that dreams or has ambitions of walking again. We simply move on with life. We get jobs, have a career, family,etc. If we have any mutual desire it is for more efficient reliable wheelchairs. Here is where I get upset--imagine if the resources put into the development of the exoskeleton were put into wheelchair technology? What inventions, new designs, different materials could have been developed as a result? I assure you finding a high end wheelchair is no easy task. American manufacturers have no interest in the development of high end wheelchair because insurance will not pay for such wheelchairs. And insurance drives the wheelchair business.

Do not take my extended complaints about the exoskeleton to infer I am anti technology. Nothing could be further from the truth. My point is that all technology has a social element and I cannot overlook the very bad message the exoskeleton sends. Indeed, it makes me mourn for a simple time when people who were paralyzed were told point blank you are paralyzed and will never walk again. Yes, this is a hard reality to accept. However people, once paralyzed, need to maximize the muscles they can move and this is where technology need to be directed. Thus while the exoskeleton makes headlines another technological innovation received scant press. Here I refer to an invention that I think combines technology with an additional cool factor. The New York Times reported about a device that enables a high level quad to steer his or her wheelchair via a tongue piercing. The magnetic stud would allow a person to steer the wheelchair with their tongue thereby negating the need for a sip and puff wheelchair. This is exciting to me--it combines non traditional body modification and technology in a way that truly empowers a person (curiously this story appeared in the Health section of the NYT and not Technology section).

The point I have tried to stress is that technological innovation is designed to meet a perceived social need. There is no need to walk after a paralyzing injury. The only need I have along with all those who are paralyzed and even more generally disabled in in some way is to be valued, our simple presence wanted. This starts with being treated equally--that means equal access to all parts of society. This is very much a minority viewpoint. To consider one's paralyzed body equal requires going against the social grain. I have been doing this for the past thirty two years and hope someday it will no longer be necessary. Inventions like the exoskeleton and the resources used to develop it make me doubt that day will be coming any time soon.

Ladies, Ladies, Ladies

2011-05-28T17:36:00.000-07:00

Well the weather is finally warm and the ladies are out in their summer finest. Makes my male heart soar with glee. I saw many lovely women today as I was out and about. I guess I will never grow up--seeing a beautiful woman makes me happy. Gosh, men (me?) are so easy to please. And I am now the proud owner of more calloused hands--yes as I am doing more my hands are returning to their previous callous state. Thanks to last month's post I am no longer self conscious about my hands. I do not try to hide them like I have been doing for decades. I have manly hands and no one as a result pushes me around. Hell, I do not even have handles on my wheelchair--I gave them up long ago. I do not get pushed and I do not get carried. The only person that I will allow push my wheelchair is my son and only when I am faced with an impossible hill--think San Francisco or Seattle waterfront.

As pleased as I am with my hands I am not pleased with my beard. I am getting asked questions not about my beard, snowy white, but rather my hair. Yes, my short hair is now object of questioning. I do not like the question. People want to know if I am dying my hair or asking me why I don't dye my beard. For the record, I am not nor will I ever dye may hair. I am getting old and that fact does not bother me one iota. But I do not like the question about hair dying. In fact a large part of me misses my long hair. Amazingly even my mother misses it too--she thinks the long hair was preferable to my white beard. Go figure. This leads me to ask is it that unusual to see a guy with a white beard and dark hair? Am I breaking some sort of social rule I am unaware of? My post about my calloused hands led to a totally unexpected response. So here i go again: what should I do with my beard? I am tempted to shave it off but am hesitant--growing a beard requires two of looking very scruffy. I do not want to go through that again. I also love the idea of being a paralyzed Santa next Christmas.

Wound Care: The Final Entry

2011-05-23T09:56:00.000-07:00

My original wound from last Fall is healed. Yes, my long experience with wound care has come to a halt. My right hip, the large grossly infected hip wound is officially gone. I will have quite the scar to remind me to be exceedingly careful. I am by no means going to simply hop up and resume my old schedule. That will take time and patience. But the life threatening original problem is gone. I am happy in the extreme. I can move my bed out of my living room and into the bedroom. I can put all my furniture back. I can actually relax when sitting. Today is a big day! I did not get here alone however. I had world class help from my family, friends, and the wound care people at Northern Westchester Hospital. The big question now is the future: how to never ever put myself in this position again. I am going to be cautious in the extreme. Going out today and buying the biggest mirror I can find for self examination. But for now it is party time!

Exoskeleton as a Social Problem: The Glorification of Walking

2011-05-16T05:40:00.000-07:00

I have written a number of posts about the exoskeleton. This is an invention that simply will not die a peaceful death and go away. I am actually beginning to get worried the device will be taken seriously. I see it as yet another dubious invention designed to help paralyzed people walk. By itself, the ideal of walking, is not a bad thing. We humans, I will readily acknowledge, are designed to walk. It is the how we have navigated the world for millions of years. But it is not the only means of navigating the world--especially when a disability enters one's life. We humans are quite capable of adaptation in the face of a bodily deficit. We adapt for practical and social reasons. The paralyzed cannot walk and hence use a wheelchair. I consider a wheelchair a powerful and liberating technological revolution--note the word revolution. I cannot function without my wheelchair. Crawling is an inefficient means of locomotion, my only other legitimate option. Or is the exoskeleton the next best thing? I think not. Indeed, I have no doubt it is not. I am less troubled by its invention---it is the by product of the defense department--than I am by the social reception it has and will continue to receive. So let me be very clear: if researchers want to spend money on the exoskeleton go ahead. Just do not ask me to fund it or support the effort.

My problem with the exoskeleton is the blatant message it sends to its users and society. Walking is the ideal and only means of locomotion. Anything different, is bad, less, demeaning; you fill in the blank with your favorite adjective. We should all aspire to walk. It is the begin and end all. You cannot function if you cannot walk. You cannot be employed if you cannot walk. Society demands little of us but one requirement to be a full member of humanity is the ability to walk. Walking means you are human, walking means you are a functional member of society. If you cannot walk you are either sick, lazy, or hopelessly dysfunctional. Your life must be dedicated to walking. Lose the ability to walk and you cannot pass go or collect $200. Walking is required. We are taught this from childhood. We see images of little children learning to walk, holding their parents hand and we are moved to tears. This is just the start--our physical environment is designed solely for people that can walk. Sure there are ramps and elevators but do we really value those things? In a word, no. We add those ramps and elevators because we in America are required to do so by law. If I have learned one thing in my 30+ years of paralysis it is that bipedal people do not care one iota about my existence or how needlessly difficult my life is. It is difficult not because I am unable to walk but because my mere presence is not wanted. How else do you explain the continued lack of physical access and gross lack of social supports?

I was reminded of my low status social status and glorification of walking when I read a story in the San Francisco Chronicle yesterday, May 15. In "Exoskeleton Lets UC Berkeley Grad Take Huge Step" the newspaper reports that "Austin Whitney walked on Saturday. No faith healers were involved. Yet when the paralyzed 22-year-old rose from his wheelchair and stepped across the UC Berkeley commencement stage to shake Chancellor Robert Birgeneau's hand, the crowd of 15,000 at Edwards Stadium went wild with cheers, as if witnessing a miracle". Rather than cheer I hung my head in despair. I will never be valued as an American in my life time. Twenty years after the ADA people still do not get disability. Worse yet, the glorification took place at the University of California at Berkeley, the home of the disability rights movement. A university that Ed Roberts had to sue to attend, a university that saw the first group of "Rolling Quads" that forced themselves onto an American college campus. I was deeply depressed when I read this story. There really is no place for me in American society. Social progress is glacial. Wheelchair use is perceived to be the same failure it was when I was paralyzed in 1978. But the exoskeleton is a miracle! It is like putting on an "Iron Man suit and acquiring super powers". How we Americans love technology but are fickle in what we embrace. Wheelchair bad exoskeleton good.

Let's delve into this miracle a little bit. Researchers have been working on the exoskeleton for a decade at Berkeley. The exoskeleton requires a walker or crutches and the user must wear a back pack power supply. No mention how heavy this is. It takes months to master and no mention is made of how far you can actually traverse or the sort of terrain you can go over. In short, it took months for the user, a lead researcher and four graduate students to program the exoskeleton so it could go across a stage. This was a made for TV event. Did the user walk across the stage in the exoskeleton when his name came up in the alphabet? Of course not, he was the main attraction at graduation. In the old days this was called a freak show. I am so glad we as a society have progressed. The newspaper reports: "On Saturday, as more than 2,000 seniors in caps and gowns stood beneath chilly gray skies waiting for their names to be called, Whitney remained behind the stage until nearly all had shaken the chancellor's hand. Then, his yellow history honors ribbon flapping against the exoskeleton strapped around his gown, he wheeled his chair up onto the stage, accompanied by members of the engineering team". And yes he then rises and walks across the stage! Oh Lord it is a miracle! The crowd goes nuts! And all this can be yours for a cool $15,000, the stripped down model that is. The super cool model cost $90,000 or $60,000 cheaper then the New Zealand model. Gee what a bargain.

I never met Ed Roberts but I bet he would appalled at what took place. I am stunned a university such as the University of California at Berkeley could lower itself to such a level. Surely someone in the administration should know its history as a leader in disability rights and put forth a basic question: is an exoskeleton demonstration a good idea? What if anything does such a demonstration mean symbolically? How will such a demonstration make other people who use a wheelchair and are graduating feel? I can answer these questions. Symbolically the university acknowledges walking is the cultural ideal. Those that cannot walk and use a wheelchair are lesser humans. Those that graduated and used a wheelchair are social failures. Thus by extension I am a social failure as is every other person that uses a wheelchair. We need to aspire to walk. No walking no wild cheers.

Having been virtually stuck in my own home for the last seven months because of my wound I have desperately missed social interaction. Now that I am nearly healed and getting out more I am shocked at the routine and every day violation of my rights. I am stunned at just how unequal the world remains for those that use a wheelchair. Ah, how quickly we forget! Even a cosmopolitan city such as New York presents needless barriers. For instance I was just at the NYC Tattoo convention. I emailed the organizers and was assured the site was accessible. When I arrived there were four steps to enter and get to the ticket booth. I would think this is need to know information, How exactly was I expected to access the ticket booth independently? I was not supposed to because, well you know, people that use a wheelchair are not independent. I am expected to ask for help and use the back door entrance. Similarly I am not allowed in the elevator myself. I must have a guard press the up or down button for me. What I am needlessly deprived of is independence and respect. We as a society do not value my existence hence a lift to the front entrance is not needed. Enter through the back door, a supposedly reasonable and, dare I say cost free, accommodation. I would vehemently disagree. It is not reasonable to make people dependent. It is in a word cheap. I have value. I have rights. Too bad people that walk do not see it that way. Today I feel like a black man living in Alabama when the Jim Crow Laws were in place. Equality was decades away. The ADA was a start, the battle is far from won, indeed it seems the most basic victory is very distant.

Hardest Hit March: Part Two

2011-05-12T12:41:00.000-07:00

I have read dozens of articles in British news papers today about he Hardest Hit March. Amazingly, the press is doing a damn good job covering the impact the march has had. Sure the focus is on the obstacles protesters had to overcome but I can overlook this given the focus is on civil rights.

One story however stood out as particularly impassioned. Jody McIntyre in the Guardian wrote "Disabled People Must Fight for a Different Society" and noted:

Today, thousands of us marched to demand that our voices are heard. But just like the thousands of students who took over the Millbank Tower last December, they will be ignored, because the government not only do not understand our struggle, they do not care. The demonstration was called "The Hardest Hit March", but I personally object to such defeatist language. Yes, disabled people will be among the hardest hit by these cuts, but they will also hit back the hardest. We are not asking for sympathy from the public or from the government, we are demanding our fundamental right to live free and independent lives.
This is not a struggle for disabled people, this is a struggle for every one of us.

Hit back indeed. Today I hope the British showed us what can happen when people with a disability forget about our differences and band together. I hope leaders of ADAPT and Not Dead Yet and the DREDF are paying close attention to what is going on in London. Imagine what a protest like the Hardest Hit March would look like in Washington DC? Now that is something to dream about. That is something we must make happen.

Hardest Hit March: BBC News

2011-05-12T11:46:00.000-07:00

Below is a BBC report. Note that 9 billion pounds is being cut.

Hardest Hit March: Part One

2011-05-12T10:58:00.000-07:00

I am very excited and proud. The disability rights movement in Britain has scored a huge victory. Every major British paper is reporting about the Hardest Hit march that took place in London. As the Brits put it: "Disabled people, those with long-term conditions and their families are being hit hard by cuts to the benefits and services they need to live their lives. The Hardest Hit campaign, organised jointly by the Disability Benefits Consortium and the UK Disabled People’s Council, brings together individuals and organisations to send a clear message to the Government: stop these cuts."

What struck me aside from powerful visuals of the march in London was the same thing that has undermined the disability rights movement in the USA: the inability to form a powerful political coalition. If the British can do it and hold a massive march in London then we in the USA can do the same.

Look at the diversity of groups participating:

Leonard Cheshire Disability
Sense for deafblind people
Arthritis CAre Empowering peope with Arthritis
Parkinson's UK Changing Attitudes
Mind For Better Health Care
Rethink
Disability Alliance
Terrence Higgins Trust
Action Duchenne
Deafblind UK
Kids
Sue Ryder
Mencap
Motor Neuron Disease Association
Radar the disability rights people
National Autistic Society
Scope
MS Society
Action for me
Child Poverty Action Group
LASA
Disability Wales
Inclusion London
PCS
Livability
Macular Disease Society
Dementia UK
Tourettes Action
Transport for All
Stroke Association
Ambitious about Autism

This list is not complete. The point is disparate disability groups came together to say no. No we do not accept the proposed budget cuts. We are human being and out lives have meaning. We are important. The draconian budgets will compromise lives.

What really stunned me is the number of people that assembled and marched. Many had never protested before. All had a great deal of difficulty getting to London. Simply put the mass transportation system that works wonderfully for those that can walk is a disaster for people with disabilities. Thus the fact that about 8,000 people showed up to march is astounding. The visuals are nothing short of awesome. I was moved to tears and encouraged about the power of ordinary people. I thought of the wonderful capacity of people to adapt to disability and society's effort to exclude. This dichotomy is so frustrating. We people with a disability have so much to give to the world and yet we are devalued and needless obstacles put in out way. Yet we overcome--over come social bias that is not our disability. There is nothing to overcome when it comes to disability itself. It is society that disables us not our bodies.

Maybe I am nuts but a large part of me is deeply moved by disability. I do not see flaws but a human being that adapts in the strictest sense of the term. I think of my adviser at Columbia, Robert Murphy who wrote the Body Silent and published and accomplished more after he became a quadriplegic. I think of how he used to drive to work with Morton Fried (a famous anthropologist) whose eye sight was terrible due to diabetes. Fried would drive even though he could not see. Murphy would direct him even though he could not move. To me this is human adaptability at its best. And that is what I saw in the Hardest Hit March--the very best humanity has to offer the world. Hopefully the British Government saw what I did.

Pictures and videos to follow.

Stephen Hawking Wastes His Time with the NYT

2011-05-11T09:39:00.000-07:00

Stephen Hawking is the most well-known physicist in the world. He also has ALS or Lou Gehrig's disease. I cannot understand Hawking's work. I tried to read his best selling book, A Brief History of Time: From Big Bang to Black Holes. I did not get through or understand the first chapter. How an estimated 10 million other people who bought the book, and I presume understood it, is a mystery to me. For some time now, Hawking has been totally paralyzed. Like others with ALS and those with motor neuron disease he communicates via a computer. Communication is slow and labor intensive. Hawking gives few interviews for this reason. I think Hawking is wise for the NYT interview published recently was dreadful. Apparently Hawking is "one of the longest living survivors of ALS, and perhaps the most inspirational". I should have stopped reading here as the interview just got worse as it progressed. The interview was different. It was "a kind of interview". The interviewer sent Hawking's daughter a list of ten questions before the interviewer and Hawking met. At the interview Hawking played his answers to the interviewer. Given how Hawking communicates this seems logical. Rather than see the logic in this means of adaptive communication the interviewer noted "despite the limitations, it was Dr. Hawking who wanted to do the interview in person rather than by email". How dehumanizing. How rude. No wonder Hawking does not give interviews. He is too busy and too famous to waste his time answering stupid questions.

The interview itself was based on a lecture Hawking gave at Arizona State University entitled "My Brief History". Hawking rarely comments about his disability and I suppose that is what made his lecture and this interview of interest. He did mention his disability--he had no choice really. One question stunned me. The interviewer asked "I don't mean to ask this disrespectfully, but there are some experts on ALS who insist that you can't possibly suffer from the condition. They say you've done far too well, in their opinion. How do you respond to this kind of speculation?" This question is not only rude but point blank disrespectful. What is he supposed to say, sorry I did not die in the expected time frame for others with ALS. How about I am not suffering I have a medical condition. Or how about not asking a question based on baseless speculation. I will give Hawking credit though his reply was polite. I doubt I would have been nearly as nice. He noted in part: "I don’t have much positive to say about motor neuron disease. But it taught me not to pity myself, because others were worse off and to get on with what I still could do. I’m happier now than before I developed the condition. I am lucky to be working in theoretical physics, one of the few areas in which disability is not a serious handicap".

The second question asked was simply patronizing: "Given all you've experienced, what words would you offer to someone who has been diagnosed with a serious illness, perhaps ALS." Sure let's reduce the world's best physicist to his disease, you know the one he "suffers" from. Again, Hawking was polite. He answered: "My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically."

The remaining questions concerned his work and were entirely appropriate. The final question was spontaneous--asked when they met. The interviewer asked: I don't want to tire you out, especially if doing answers is so difficult. But I'm wondering: The speech you gave the other night here in Tempe, My Brief History, was very personal. Were you trying to make a statement on the record so that people would know who you are? The answer "after five minutes I hope my experience will help other people". Does the interviewer really need to let readers know it took five minutes to provide a single sentence answer. No, it was done to prompt an emotional reaction--pity.

This sort of interview is so frustrating to me. What an opportunity was lost. I can think of many questions to ask Hawking who strikes me as a private person. To the best of my knowledge he rarely if ever answers questions about his disability. Now I know why. Like any other human he does not want to be pigeon holed according to a preconceived notion or type. He is not an inspiration to me or any other person with a disability. He does not advocate for disability rights as far as I know. Not every person with a disability wants to do this. His passion is physics. He is a physicist. Hence I admire Hawking's work not the man. His disability is not relevant in any way. If I had a hero it would be a person like Ed Roberts who advanced disability rights. Sadly, no one outside of the disability community even knows who Roberts was. Now this is a problem worth addressing instead of asking inane questions directed at a world famous physicist.

Civil Rights American Style

2011-05-05T11:57:00.000-07:00

It has been difficult to watch the news since last Sunday night when President Obama announced Osma bin Laden was killed. The media frenzy has been intense. CNN must be thrilled; it is a classic example of media over saturation in the extreme. I am disgusted by the entire discussion. I understand but found the so called spontaneous celebrations disheartening. I was left with little doubt why most people in the Middle East hate the United States. What do they know of us? Armed soldiers and bombs that reign down death with regularity. What has struck me about the media is the endless news loop that we Americans are fighting for freedom. This has me thinking about the meaning of freedom as we know it. Americans have been fighting for the concept of freedom for over two hundred years. We have had good wars, World War II, bad wars, Vietnam War, police actions, Korean War, and now we have the endless war, the war on terrorism. It struck me last night as I watched yet another story about the death of Osma bin Laden that fighting for freedom has become a ritual. If we Americans are not fighting for something, exposing an injustice, or celebrating our freedom we are at a loss for words. We have been so busy fighting we have forgotten what exactly it is we are fighting for. It feels to me we are fighting to fight. Worse yet, we no longer have a way of measuring our supposed success or failure. Was killing Osama bin Laden good or bad for the war on terrorism? Check in at 11PM for the latest poll results.Is it not possible to think for ourselves? Do we really need a poll to tell us how to feel?

What does the above have to do with disability? If we value freedom above all else, civil liberties, what we now call civil rights comes in a close second place. we are all taught racism is bad, very bad. This is a good lesson many fail to learn. Racism is alive and well in spite of the fact we elected a black man president. In much the same way, just because we passed the ADA 20 years ago bias and discrimination did not suddenly end. This point was made forcefully by John Hockeberry. I recently attended a lecture he gave at Columbia University entitled "A Law is Just the Beginning: 20 Years of Americans with Disabilities Act". As usual, Hockenberry was an engaging and entertaining speaker. He has the rare ability to make one laugh and think at the same time. As Hockenberry talked I realized what a jerk I was when the ADA was passed. I really thought the country was going to be revolutionized. I honestly swallowed the rhetoric hook line and sinker. What a rube! I am no more equal today than I was 20 years ago. Architectural barriers abound. Social oppression though no longer blatant is still present in an ever so polite socially sanitized form (see inaccessible taxis for the future I posted about). These thoughts came to me as I was inspired to reread Hockenbery's memoir Moving Violations. Hockenberry's book is outstanding. I loved it when I first read it in 1995 and it has withstood the test of time--my time that is. Hockenberry's work still resonates deeply within in me. His experience reflects my experience. We were both paralyzed in our late teens, came of age before the ADA, and felt great self imposed pressure to excel. In terms of the present discussion, one passage in his book jumped out last night as CNN droned on.

What we call civil rights in America is people jumping through hoops for their freedom, then having their scores tallied like figure skaters in the Olympics. Uppity niggers score low, so do illegal immigrants, and welfare mothers and crips who ask too loudly why there is no ramp into the theater. "We fought for it, so it's only fair that you should have to". It is America's real declaration of independence that poisons and isolates Jews, Asians, and whites from each other. It is less about race today than it is about this brutal free-for-all of who gets what, who deserves more, who's being fair, who's taking advantage". pp. 351.

Wow, does this reflect my experience in the last decade. No one really cares about access or civil rights for people with a disability but rather does the school, work place, or bus conform to a poorly written law no one except a lawyer reads. The concept, the idea of freedom and civil rights are not even worthy of discussion. This makes me mourn for a time before the ADA existed though I do not want to relive those days. Prior to the ADA I knew who was my friend and who was a foe. Today, I have no idea. The person that slaps me on the back and gives me a big smile hello could be the same person that bitterly complains about the money "wasted on special needs" kids at school board meetings. I wish I had a solution to the vexing problems I have risen. Indeed I am ready to throw up my hands and say enough, I do not give a damn! Of course, I cannot do that. It is just not possible. I am too much of a hard ass to give the bigots of the world the satisfaction who ever they may be.

NYC Cab of Tommorrow: A Bipedal Only Cab

2011-05-04T13:47:00.000-07:00

Mayor Bloomberg announced the winner of the "taxi of tomorrow" winner. The winner is a a suburban mom mobile, the Nissan NV200. The taxis that will come to dominate the city has lots of features people want. Passenger airbags, a GPS system, USB charging ports, separate climate controls, sliding doors, see through roof, and it gets 25 mpg. The contract between Nissan and the city will last 10 years and is worth about $1 billion in sales. Mayor Bloomberg is thrilled. He stated "It's going to be the safest and most convenient cab the city has ever had. They will be custom designed to meet the specific demands of carrying 6000,000 passengers a day in New York City traffic".

I have no idea if Mayor Bloomberg made the right choice in selecting the Nissan NV 200. But I do know Bloomberg and the Taxi and Limousine Commission do not give a damn about wheelchair access. Yes, I suppose we pesky people with a disability, especially those that use a wheelchair, are not part of the future. It is hard to get excited knowing that of the 13,237 taxis in New York City a grand total of 240 are required to be accessible. Getting a cab in New York City is never easy for a person that uses a wheelchair. In my experience a NYC cabbie would rather pick up a deranged and armed gunman before stopping for a person that uses a wheelchair. If you think I exaggerate I suggest you try to hail a cab using a wheelchair. The so called "taxi of tomorrow" is yet another sign of inequality. It is a not so subtle fuck you to every New Yorker that uses a wheelchair. In fact., I think it is an in your face sort of fuck you. We crippled people are not part of the past, present, or future. What this means to me is that for the next decade or more getting a cab in New York City will remain problematic at best. Yes, the cabs will transport 600,000 people. 600,000 people that can walk. We people that have a disability and use a wheelchair are screwed. Worse yet, I am not surprised. This is just another example of how people with a disability always seem to get the shaft. It is so common, so expected, it does not even merit shock and indignation. Only one story I read about the "taxi of tomorrow" even mentioned the lack of wheelchair access. Where is the outrage? I am mad as hell and seem to be the lone voice of dissent. How is that we have an amenity laden cab and yet one that is not accessible. The reason is simple: we value a GPS unit, we value USB ports, we value a sun roof, sliding doors, air bags etc. We value these things. They are part of the fabric of our lives. Today, I realize my existence as a New Yorker is not as important as material things. What a sad but not surprising commentary.

Money: How it is Spent Makes No Sense

2011-05-03T13:41:00.000-07:00

A few days ago I read about my favorite invention I love to poke fun of--the human exoskeleton that enables paralyzed people to walk. Today I read 89 protesters from my favorite disability rights group, ADAPT, were arrested in Washington DC. What do these two disparate stories have to do with one another? Money stupid! Rex Bionics, a New Zealand company, has just sold its first custom fitted robotic exoskeleton to Dave MacCalman. MacCalman has represented New Zealand in the Paralympics, winning gold and silver medals. The exoskeleton is, in my estimation, silly in the extreme. In fact the words pointless waste of resources come to mind. And when it comes to resources much was spent. The exoskeleton took seven years and $10 million in development costs. Read that sentence again--carefully. And exactly how much does an exoskeleton cost? It retails for nearly $150,000 USA dollars. That is a lot of money. Now if I had a spare $150,000 I would not spend it on an exoskeleton. No, I would spend such money wisely. I would buy a high end sports car. A Porsche 911 Turbo that retails for $135,500. I would even have money left over to buy gas, go up to 135 mph, have 500 horse power, get 24 miles to a gallon, and be able to go from 0 to 60 in less than three seconds. This is may not be what everyone needs but it sure is valued by some. The point here is that the exoskeleton is about as practical as a Porsche 911 turbo. Practical or not we value such cars, priceless engineering, and walking. Walking is very nice. Driving a Porsche 911 is very nice too. But are either really important in the bigger picture of life? Not in my opinion. Would it nice to be able to walk around my house? Yes it would but it is nothing to aspire to nor is it worth spending $150,000. Waking does not define who we are as humans any more than the Porsche 911 turbo defines car making.

The exoskeleton and Porsche 911 are feats of engineering that are not needed. There are far more important things in life than the ability to walk or drive a car that costs $150,000. This is what I was thinking when I read about the 89 people from ADAPT that got arrested. ADAPT was protesting Paul Ryan's Medicaid plan that would force people with a disability into a nursing home rather than live in their own home. The issue as I understand it would turn Medicaid into block grants and reduce spending by more than $700 billion over ten years. The protesters were arrested by Capital Police for occupying the rotunda. I wish I was there for I know how sound travels in a rotunda. I bet they were loud and confrontation. ADAPT people get what is important. People with a disability, like all those pesky people that can walk, value their independence. This is something we as a society should invest in--independence and autonomy. No one can be independent and autonomous in a nursing home. In an institution you do not control your own destiny. Why we do not seek to empower people is a mystery. Why we spend invest, develop, and spend millions on things, material objects such as an exoskeleton and Porsche 911 turbos is a mystery. Which is more important, a material object, albeit a very cool one like a Porsche, or people's lives?

Mendicant Literature Then and Now

2011-04-28T13:56:00.000-07:00

I have been spending the last few evenings savoring a book I have already read. I read the book last year and was inspired to read it again because I met the author at a conference recently. I am referring to Susan Schweik’s Ugly Laws: Disability in Public. This book not only reveals a little known aspect of disability history, the so-called ugly laws, but is based on original research and reliance on archival material no other scholar has delved deeply into. I know how hard and time consuming task because I wrote an intellectual biography of Leslie A. White that was based on archival material.

I admire everything about Schweik’s book—the writing is clear and concise. Schweik is able to illustrate larger points about disability using specific examples from the ugly laws. Even the book cover is outstanding. It has a well-known photograph by Paul Stand circa 1916 known simple as “Blind Woman”. I have looked at this photography many times and wondered what did Strand think when he took it. What if anything did this woman say to Strand? I have always found the image haunting. What was this woman’s life like? Was she happy or sad? This in turn makes me think how the lives of people with a disability have radically changed since 1916 and the enforcement of the ugly laws. To begin, we people with a disability live. That is most of us have a normal life expectation. I am proof positive of this as are many men and women who have spent the majority of their lives paralyzed. But what sort of life do we lead and how does it compare to those that came before us. Schweik, in part, has filled this gap. Schweik calls the stories of our crippled forefathers mendicant literature. Schweik writes “Mendicant pieces are books and pamphlets written by handicapped or penniless persons, usually telling their life story, and peddled by them to earn a living.”. This history of disability is not known nor is it taught widely. Sadly, such a history is not respected or valued even on college campuses. Schweik writes about a disturbing but telling experience. As she was conducting archival research she recalled “There’s something for everyone here another Harvard librarian said, apparently amused at my interest, as she brought me a catalogue organized alphabetically [Amputee] followed by [Blind] and then [Crippled]. Here… presided over by dreams of free speech, by ghosts of eugenics, and by the medical catalogue of impairments, mendicant literature speaks of the ugly laws”.

Ugly laws led to the production of medicant literature. This literature, the life history of people with disabilities, is important. It is important because it illustrates a vibrant past and has troubling implications about the present. We people with a disability have not created an effective political coalition. We are hopelessly splintered. Blind people advocate for themselves as do the deaf, the paralyzed, etc. While much advocating is performed it is largely ineffective. Have we really advanced far beyond an antiquated medical model of disability? In a word, no. I sincerely doubt people think about disability rights until it affects them directly. This is a problem we have not begun to address. All the laws in the world will not advance disability rights unless there is a social demand for such rights. As of today, I feel as though disability rights are invisible or worse an annoyance to many. Do we really need those expensive ramps and elevators given how few people use them? I would contend we as a society are hiding behind laws and regulations and bogged down in the minutiae of access when our problem is much larger and deeply rooted. We do not ask the important questions: why are disability rights thought to be different from other civil rights? Why do we tolerate inaccessible building and a shockingly high unemployment rate? Why are lifts not on every school bus in America and an interpreter for the deaf at every public event? These are the sorts of questions we should be asking. These are the sorts of questions we should be united to solve.

Callous Hands and Loss

2011-04-24T14:13:00.000-07:00

It has been about seven months since I found the wound on my hip. I never dreamed I would still be dealing with the wound all these months later. I hate wound care and changing my dressing. It is a daily reminder of how fragile the paralyzed human body can be. I am also appalled by all what I have missed. My life since last September has been like a black hole. I missed the Fall harvest. I missed teaching a full academic year. I missed an awesome winter and did not ski once. Seven months is along time. I can now see that my body has changed. I am not better for this experience nor is my body stronger. I know my strength will come back once I am able to sit up all day and resume my regular activities. I am sure I will be kayaking at some point—surely before the end of the summer. This prospect excites me.

Since I can get up more today, a warm sunny Easter Sunday, I went for a walk with my son around my property. Yikes, I have my work cut out for me. My vegetable garden is a mess. Last Fall I did not clear it out. My garden beds around my home are a mess. The deer have had a field day. I have a tree down that I need to cut up with a chain saw and then split up the wood for the wood-burning stove. My head is spinning with all that needs to be done. This does not bother me—I love manual labor. It clears the mind and strengthens the body. It was not until I was inside and my son engrossed on-line that I had a strange sense of loss. I looked at my hands carefully and was stunned to realize my callous hands are smooth. My hands have not been callous free in thirty years. My hands have felt like like shoe leather for decades. I am both proud and embarrassed by this. I tell people with hands like mine no one pushes me around. This is both literal and figurative. My hands are like those of a man who has performed manual labor his entire life. In short, I have ditch digger hands. I am extremely self-conscious about my rough hands. They are rough and hard—an occupational hazard. No way to get around this. A solution does not exist—not that I want or am seeking a solution. Amazingly I am sad to be without my calloused rough hands. I am stunned I miss my callous hands. I have always tried to hide my hands from women. Surely a woman wants a man’s hands to not feel so hard and calloused. How ironic. I was not happy with calloused hands and now I am not happy with callous free hands. For the first time in my life, I want my calloused hands. It was not until today I realized being self-conscious was misplaced. My calloused hands are a symbol of an active life. A life I hope to get back to very soon.

Growth Attenuation and the Law

2011-04-21T11:28:00.000-07:00

A number of articles about the growth attenuation and Ashley X have been published that discuss the case from a legal perspective. I find these articles heavy going. None have impressed me and many seem to be authored by law students who latched onto a hot button issue. I will readily admit I am not a lawyer nor do I have a thorough grasp of the technical legal issues involved in growth attenuation. However it is my hope that the WPAS remains committed to protecting the rights of children such as Ashley and all others with a disability. I would think it is in the best interest of the WPAS and Seattle Children's Hospital to continue to work together since they reached an agreement. I am equally sure the WPAS nor Seattle Children's Hospital wants to see Washington State law is not violated again. One Ashley X from my perspective was too many. I do have cause for concern after reading a letter written by Jeffrey M. Sconyers, the lawyer that represents the hospital in the Ashley case. The letter I refer to was published in response to the Hastings Center Report written by the Seattle Growth Attenuation and Ethics Working Group (I have already delved into these findings).

Sconyers makes one factual correction to the Hastings Center Report. Sconyers notes Seattle Children's Hospital did not "agree to obtain a court order prior to any future medical intervention to attenuate growth in children with developmental disabilities". Rather Sconyers states "we agreed that we would not provide such intervention unless we had received a valid order from a court of competent jurisdiction, not subject to appeal, authorizing such intervention in a given specific case". Sconyers argues there is a difference. He wrote: "We recognized that as a hospital that stood to benefit financially from approval of growth attenuation treatment, we had an irreducible conflict of interest that made it improper for the hospital to seek court approval for the care. That responsibility rests with the parents or legal guardians of the child whose growth may be limited, not the hospital."

Let's not mince words here: the hospital is passing the buck. They passed the buck in the past and are doing so again. The hospital admitted error in the past, an error that cannot ever be corrected. Illegal treatment, illegal surgery, took place. Who was to blame? The hospital and the bad legal advice Ashley parents received. The victim was a little girl. Now we are being told by the hospital attorney that it is in the hands of the court. They have an "irreducible conflict of interest". The skeptic in me wants to note why they ignored this fact originally only to see it clearly today. Leaving that aside, do we really trust the courts to protect the rights of children like Ashley from the interests of their own parents? Need I detail the myriad of ways the court has failed people with a disability in the past. I suggest if you think i am biased read the work of Lenny Davis and the legal term "bending over backwards". In short, I have absolutely no faith in the court. Remove all the rhetoric that has surrounded Ashley X and the ethics of growth attenuation and it boils down to one thing for me: we as a society cannot target one population and absolve ourselves of a human rights violation. It is not about dignity, self interested parents, or doctors trying to help one little girl and her family. It is a clear case of bias, bias in which a specific population is considered somehow not fully human. The implications of this are sobering and dangerous.

Life Support: Not What You Think

2011-04-14T06:09:00.001-07:00

Last year I read about Dan Crews. It was a sad story I chose not to write about. Crews experienced a spinal cord injury when he was three years old and is a ventilator dependent quadriplegic. Briefly put, he wanted to die. He wanted someone to turn off his respirator and he went public with this request. The story made the news and I recall not being surprised that many supported his desire to die. Suicidal thoughts for high level quadriplegics shortly after injury are not uncommon. I tend to think it is a sane and rational response to a devastating injury and radically life altering event. However, the vast majority of people with such an injury move on with life. These are people you never read about in newspapers. I thought that Crews wish to end his life was nothing more than a public cry for help. I did not want to step into the fray though I was disappointed by the media coverage. It was maudlin in the extreme. It was also overwhelming supportive. For example, in 2010 the Milwaukee Wisconsin Journal Sentinel noted:

Every day, Crews lies in bed for hours, staring at posters of cheerleaders, watching sports he will never play. When he wants to make a call or use the computer, he asks his nurses to bring him the telephone, which he pecks at with a stick he holds in his mouth. When he's thirsty, he calls for a nurse, or for his mom, Cheryl Crews, who lives with him. They bring a drink and hold the straw up to his mouth for him as he sips.
"I have no friends. I have no education. No education prospects. No job prospects. I have no love prospects," he said. "All I want is to no longer live like this."
He is physically incapable of ending his life.

The message here is not subtle. Kill the poor man already! Slow down. Forget the melodrama and please ask the pertinent question. Why exactly does Crews want to die? It has nothing to do with paralysis but rather with his quality of life. Thus the question that should be posed is why is the quality of his life so poor. Why does he have no friends? Why does he live with his mother? Why does he lack an adequate education? Why does he not have a job? Why is his love life lacking? These questions could be used as a spring board to address a multitude of obstacles people like Crews and others with spinal cord injuries routinely encounter. Crews is far from unique--indeed, the only thing that sets him apart from others is his wish to die. He is the exception not the rule to how people cope with spinal cord injury. You will never read about these other people. They do not make good copy. They will not reinforce societal beliefs that a devastating spinal cord injury such as the one Crews experienced is a tragedy. This tragedy precludes the ordinary--a job, family, education, and a girl friend. Again, I ask why. Why does a disability, even a high level spinal cord injury, preclude a rich a full life? The answer is not complex--society does not value or support such lives. The fact is Crews has the same inalienable civil rights as any person that can walk. He has had these rights since the ADA was passed. Just because the law states he has these rights does not mean we as a society support them. I know they do not.

I had not given Crews much thought until this week when his name came up in the news yet again. I had assumed Crews was doing better, that positive change had taken place. The jaundiced part of me thought perhaps publicity is not such a bad thing. I was wrong. Crews is still unhappy and wants to die but for different reasons. The $4.2 million settlement Crews received after he was injured is gone. He is now deeply in debt, likely to lose his home because of his medical bills. Where will Crews end up living? In a nursing home. Life in a nursing home is in the words of Crew "hell on earth". For a young sentient male this is quite true. Crews stated "I thought I wouldn't live to see this. It started to dawn on me last year that money was leaking out like a sieve. I will lose the one thing that makes my life tolerable: my privacy and my family." Going bankrupt to pay medical bills is exceedingly common today. But for those with disabilities the choices after one goes bankrupt are exceedingly limited. There are inherent dangers here. People with a disability know this as does the medical establishment. And like all others humans people in the medical establishment are subject to individual bias. This bias can be deadly for people on the margins like Crews and others like me with a spinal cord injury. Such individuals do not receive equal treatment socially or medically. We are, I am afraid, returning to a harsher time when able bodied people determined when disability is too much to bear. This thinking is so wrong it is staggering to me. The obstacles we people with a disability encounter are largely social. No one wants to engage in a discussion about the reasons why we remain socially isolated, under educated, and unemployed. The only thing keeping Crews in his room are social barriers we as a society are willing to let exist. Crews went to a local college and had dreams of a career--dreams he gave up on because the barriers to going to a school away from home were too overwhelming. This too is not unusual. Indeed, I refer this as academia's dirty little secret. High level quadriplegics are effectively barred from attending college. The social and architectural barriers are too imposing.

How many lives such as Crews will be lost before we choose to change? How many lives have been derailed already? It is so easy to misconstrue the lessons we can learn from Crews hardship. For example, in a story about Crews last year year the UWM Post noted:

"He does not have a career. He does not have a social life. He does not have a love life. He is stuck in a bedroom, day after day after day. He cannot enjoy and appreciate all the little things we, as able-bodied beings, take for granted – for instance, the sun warming our faces and the sand beneath our toes as we walk along Lake Michigan’s beach on a beautiful day. Take a moment to reflect if a life without all the simple pleasures sounds like something you would be content with.
The Journal Sentinel writes, “Yet stories like Crews’ are troubling to disability rights activists. They argue his quality of life doesn’t have to be inherently bad; rather, they say, society doesn’t provide the resources for Crews and others to live a satisfying life.”
My question is: what resource could possibly be provided to someone in Crews’ condition? I have wracked my brain trying to think of something – anything – that could even begin to make a person destined to the confines of their bedroom, due to accident or illness, feel as if they were not missing out on, well, life. I’ve got nothing."

Let me respond to this inane melancholy. I have not felt my toes in 32 years. I have tenuous control over my bladder and bowels. I cannot do many things, ordinary things, those that can walk do without thought or appreciation. So what. I do things differently. I use a wheelchair and the barriers I encounter are numerous and unnecessary. Yet when I go outside my home and feel the sun on my face I too am happy. I am sure Crews is happy when he too feels the sun on his face. I cannot walk along the shores of Lake Michigan. I have instead paddled along the shore in my kayak. I have enjoyed pushing my wheelchair for many miles in the city of Chicago and been to many of its famous museums and done research at the University of Chicago. I have eaten at many steak houses and consumed my fair share of deep dish pizza and hot dogs too. In doing so I have concluded life is pretty sweet. The problem is not with my body but with the maudlin sentiments in the UWM Post and larger news outlets like the New York Times, Chicago Tribune, and LA Times help perpetuate. All these papers have assumed Crews request to die is reasonable. Sorry this is just wrong. If I have learned anything about life since I was paralyzed when I was 18 years old it is that life is what you make it. I consider myself lucky. I have a great family, a son I adore and love more than I ever thought possible, good friends, and a lovely home. I did not get all these things in a social vacuum. Life may be what you make it to borrow a trite old phrase but I would add the proviso people need to be given a chance and that chance includes social supports. In this era of draconian budget cuts and health insurance companies that operate without ethics or government oversight people like Crews have virtually no chance to lead a rich and full life. To me that is the real story, one that has been ignored.

Purple Feather: Offensive in the Extreme

2011-04-11T10:17:00.000-07:00

I am stunned by the embedded video produced by Purple Feather, a UK based company. Stunned. Shocked. Offended. Take your pick all would describe my reaction. I rarely post anything about disability rights outside of the United States. I stick with matters as they pertain to the United States because disability is perceived differently in other countries. Sure I am familiar with issues abroad, especially as they relate to Canada and the U.K., but I prefer to keep a focus on this country. We clearly have enough problems of our own. Yet I do from time to time comment about issues abroad. When I do so it is because i have a very strong reaction to a gross injustice that has taken place. The embedded video fits into this category.

I know nothing about the company Purple Feather, an online content specialist. This company writes online and offline content for websites, magazines, books, newsletters, marketing campaigns etc. I suppose they are good at what they do. Portraying people with a disability in a negative way is something i have railed against in the past. It is nothing new. This video however sets an all time new low. While I rail against ads that portray people who use a wheelchair as dependent, this video takes it even further. No pretense is made about the fact a blind man is begging. Ho hum, an every day event I suppose. Shockingly, from an international perspective it is common--the most common world wide "job" for a person with a disability according the the UN is begging. This man is dehumanized in the extreme. The poor bastard cannot not even write a sign worthy of a beggar. This is left to an able bodied woman. You know those all powerful people that can walk, hear, and see. No thought, none, is given to why people with a disability may be forced onto the street to beg. No thought is given to how a blind person can do the ordinary--you know like enjoy a beautiful sunny day. If you are blind you could not appreciate such a day. If you are blind you are reduced to begging on the street. If you are blind you are helpless, dependent upon others. Enter soaring music and pulling at the heart strings of people that know nothing about disability. Judging by the comments posted on You Tube the vast majority of people that saw the video loved it. Yes, it was "moving", "inspirational", "touching" etc.And how many people saw this so called "moving" video. Almost one million! Of those that took the time to press "like" they numbered a staggering 6,621. People such as myself that pressed "dislike" numbered a meager 67. Now I try to ignore comments such as like versus dislike but this made my blood pressure soar! Worse yet, I think it represents the depth of knowledge people have about disability. Here I would put that knowledge close to nil. I do not think people are stupid but rather uneducated. We simply choose not to teach people about disability. We choose not to think disability rights and civil rights are comparable. We choose not to include memoirs written by people with a disability in secondary school curriculums. We do not have disability studies department at every major university. We choose to ignore the ADA whenever possible in the USA. We choose not to employ people with a disability. We choose to provide sub standard education for people with a disability. It is no wonder we rarely see those pesky people with a disability out in public. When we do see them what do we expect to see? According to this film, on the street begging with a shitty sign. But despair not! A good hearted woman will edit that sign and her fellow exemplars of civilization will drop a few coins in the man's tin jar. Is this 1911 or 2011?

Okay, it is obvious I am mad--very mad. And to borrow the classic film line "I am mad as hell and I am not going to take it any more!" Here is what I want readers to do. Send Purple Feather a very angry email. Go to You Tube and mark this film as offensive content. I for one am offended. This is what I did and I swear if this was a US based company I would call up the CEO and complain vociferously.

Education: A Total Failure

2011-04-10T08:19:00.000-07:00

I hate the term special education. To me, there is nothing special about special education. When I was a child they did not call it special education. We had three groups of kids--the smart kids (blue birds), average kids (robins), and the dumb kids (sparrows). We kids all knew who was smart, average, and stupid. The names of pretty little birds was just sanitized window dressing. That window dressing would become and remains known as special education. Special education serves a purpose and does educate those kids deemed "special" as well as those considered "normal" or worse, "gifted". What is taught involves far more than what is deemed important in the classroom. In fact I would argue what takes place in the classroom is of secondary importance. Education puts us on a social path, it is a marker of what we are, will be, and can be. For people with a disability that path involves social negation--we are not defined by who we are but what we are not. What we are not is normal--normal as defined by an educational system that does not see potential but abnormality. We cannot walk. We cannot read. We cannot see. We cannot hear. We cannot learn at the socially prescribed rate. All we are told is what we cannot do. What we cannot do is bad. We are bad. Accordingly, our expectations are limited. We are taught not to expect equality. We do not expect an equal education. We do not expect to be treated with respect. Resentment to our very existence and any money spent on our education abounds. This message is delivered efficiently in secondary schools by our peers, other parents, teachers, the PTA, and administrators.

The clearest symbol of the failure to educate those with disabilities and all who are in some way different is the dreaded short bus. Ask any person who had a disability as a child and mention the short bus and you are sure to prompt a strong reaction. The short bus was supposed to represent progress. And amazingly it was progress. Prior to the passage of IDEA, Individuals with Disabilities Education Act in 1975 children with disabilities were not entitled to a public education. We were banned from public schools for a host of dubious reasons. People such as myself who used a wheelchair for instance were deemed a fire and safety hazard. While the law stated we were entitled to an education we were and to a degree remain segregated. The easiest means of segregation was rooted to the transportation system. Yes, the dreaded short bus is effectively used to this day to segregate students with disabilities. For example, the public school my son attended in the wealthy suburbs of New York has one bus with a wheelchair lift--one. Let me repeat that--one bus circa 2011 or 36 years after IDEA was passed into law (20 years after the ADA). On that short bus every single child with a disability in the district is transported to and from school and on class trips. My son would not be caught dead on that short bus the kids call "the retard bus". Now that is is an education! Children have been taught segregation is the norm. The normal kids rule. The normal kids have power. Kids with a disability are different, special. Being different is judged in relation to the norm. The norm does not include people with a disability. Special education, the short bus and the utter lack of social integration is about establishing lifelong boundaries. We people with a disability are on the outside looking in. The fabric of society does not include people with disabilities. We are broken, sick, wheelchair bound--anything but normal. Lenny Davis has eloquently written about this in Enforcing Normalcy.

The consequences of our failure to teach all children that people, young and old alike, with a disability are equal has profound social and economic consequences. 66% of Americans with a disability are unemployed. A third of people with a disability live at or below the poverty line. Only a small percentage of people with a disability have a college education. An even smaller number, a microscopic percentage, have an advanced degree such as mine. This is a costly failure. It is a failure that leads to social invisibility. We people with a disability live at the margins of social respectability. We were not accepted in schools and we are not accepted in the work force. Our presence is not required or even expected. In this era of draconian budget cuts in education and services for people with disabilities these are grim times. We may be saving money now but I wonder about the social consequences. I wonder how many people with a disability turn their failure to receive an education or a secure a job into self loathing--a personal failure. It is understandable to direct failure inward--I still vividly recall when I was first disabled I was stunned at how differently I was treated. I felt as though I had the plague. I felt as though I was the same person but I sure as hell was not treated as I once was. This caused me to withdraw from others. When I went to college I spent way too much time drinking and smoking pot. I partied hard but I also worked hard at academics--something I was inherently good at. Somehow I knew that education was the only thing that could save me from a life of despair. I was also blessed with outstanding parents who supported and fought right along side me against social injustice. In retrospect these two variables, an outstanding education and supportive parents, are what successful people with a disability have in common. Getting an equal education is very difficult for any person with a disability and good parents are a matter of luck. I was especially lucky--indeed I joke that I hit the parent lottery. But I did have to fight for an education. Sadly, that fight for an education is something people with a disability must still undertake. That fight is different from what I endured. No person is barred from school and told they are a fire hazard. But this does not mean bigotry and exclusion are absent. That fight today entails a lack of equal transportation, socially sanitized and accepted segregation, deep budget cuts as well as resentment "normal" kids somehow are neglected.

The above has been on my mind since i read Jonathan Mooney's wonderful book The Short Bus. This book is filled with delightful stories in a wickedly twisted way. It like a cripple Kerouac's On the Road. I highly recommend this book for it does what few books ever do--make you laugh and think at the same time. How this book made me yearn to travel. As soon as my wound is healed I am going to hit the road. Where i am going, I have no idea. But go I will for travel is akin to a real special education. And if there is one thing I still yearn for it is education.

Wound Care Update

2011-04-03T14:24:00.000-07:00

I have been getting away from giving updates on my wound. The reason for this is simple: I continue to heal. I have been free of the wound vacuum for more than a month and hopefully will never see the damn machine again. I still have wound care come to my house to help change the foam island dressing. I do this myself the days wound care does not come. It is quite awkward to do but I get better each time I do it. I have given up guessing when the wound will be fully healed. It is now very small, smaller than the size of a dime, and superficial. I figure a few more weeks at most and I will be at long last officially healed. What a long arduous process this has been. This has been a road I hoped to never traverse, one I hope to avoid for the rest of my life.
The point of the above is that my posts will and pretty much already have returned to normal programming. I will continue to hammer away at my undivided goal--equal rights for all people with disabilities. That is the one theme that hold each and every post together. It is a quest I will never give up on. It is my fervent hope that the posts I have put up over the last few years will help in some small way counteract what is written in the mainstream media. So, stay tuned for more words from this bad cripple.

Assisted Suicide: No Assistance Wanted

2011-03-31T08:35:00.000-07:00

I do not want to die. This sentiment hardly makes me unusual. What does make me different is I have a legitimate worry. I worry someone will decide to kill me. I do not think someone will kill me maliciously, for spite, or hate. I worry someone will kill me with kindness in their heart. I am not paranoid. I know more than a few other people with a disability that have the same worry. Like it or not, people with a disability are not valued. Our lives are deemed tragic. Social expectations are limited at best. No one expects us to have a job, be a parent, or live a vibrant life. No, our role is to get well. For me, that means I should spend all my time thinking about walking. I should go from doctor to doctor to make this happen, subject myself to experimental stem cell treatment. If I did this I would be lauded as courageous. I consider efforts for cure to spinal cord injury an abject waste of my time. I can happily leave that quest to medical researchers. Instead, I rail against social prejudice and the stigma that clings to disability 20 years after the ADA supposedly made me equal to my bipedal peers. Of one thing I am sure, in daily life and in particular a hospital setting I am very far from equal.

I have been preoccupied with end of life issues since I read an article by Neil Shapiro in the Monterey Herald entitled “Right to Die Gives Dignity to the Disabled” (3/21/11). What strikes me as remarkable is the universal social support people with disabilities receive if they express a desire to die. Why is help to die given so willingly when social supports that are needed to live a full and equal life with a disability despised. Do not doubt me on this. Think for yourself. Read about draconian budget cuts sweeping the nation that adversely affects people with disabilities. Better yet talk to a parent of a child with a severe disability. They can regale you with horror stories about how they have to fight tooth and nail for the most basic support. Talk to a person with a disability who has no job or health insurance and as a result cannot afford a good wheelchair or cushion to prevent a pressure sore from developing.

Many disability studies scholars have explained why people with a disability are not valued. They argue knowledge is socially situated and has inherent logic to its members. Identities are socially constructed and fit into the aforementioned socially constructed knowledge. Certain bodies, disabled bodies (my body) are excluded from dominant social ideologies. The disabled body is inherently flawed. The person with a disability must be in pain, physical or mental. The person with a disability must be unhappy with his or her flawed body. The person with a disability has thus lost their dignity. The person with a disability has lost control and independence. This, for Americans, is a fate worse than death. So it makes sense to put the poor bastards out of their misery? Ah, no it does not. What the above reasoning utterly fails to consider is why. Why are people with disabilities shut off from routine social interaction? Instead of addressing this vexing question we have people like Neil Shapiro who out of the kindness of his hearts wants to help people with a disability die. He also thinks Dr. Kevorkian was a “quirky Michigan doctor”. Shapiro wrote:

“It seems to me that the right to decide that one has suffered enough, that whatever joy remains in life is outweighed by that suffering and that it is time to die, is one of the most fundamental of human and civil rights. Why should one's neighbors be able to dictate that one should not be able to terminate one's unbearable pain? But unless we follow Oregon and Washington, we may never have this right.
There is a great irony in all of this. Those who are not incapacitated are physically able to commit suicide, and need no assistance. Those who require, but are routinely denied, that assistance are the disabled. We spend billions of dollars making sure that they have the same right as the rest of us to shop, visit the beach and the like, but we deny them the right to die with dignity. Go figure.”

Where do I begin? If it were up to my neighbors as Shapiro puts it, I would have been denied an education. I would not be able to get on a bus or plane. I would not have a job or be father. We people with a disability had to fight for these fundamental rights. Even though we people with a disability are supposedly equal I have never felt that way—ever. The idea of equality for people with a disability is illusive at best. As for the billions of dollars spent on access, which Shapiro seems to resent, has saved countless lives, mine included. But just because we spend money on access and inclusion does not mean we value the people who are supposedly equal and included. When it comes to disability rights, as a society we merely pay lip service to these inherent civil rights most take for granted. We do not in reality accept the presence of people with a disability. If we did I would not be forced to enter the back of so many buildings or have to call ahead to ask about access on a regular basis. Simply put, the disabled body remains unwanted and is perceived as defective. Worse yet, the disabled body is costly. Hospitals remain grossly inaccessible. Efforts to be inclusive are often ignored or belittled. The message society sends is not subtle. There is a word that comes to mind—oppression. Add in an illness, social isolation, dependence upon others and the logical leap to thinking my life is not worth living is dangerously short. Thus it is ever so easy to write one wants to control the way we die and the circumstances surrounding death. This desire is understandable but in my estimation dangerous for people with a disability. We need to take a much closer examination of the pros and cons to assisted suicide. When we do sentiments such as those expressed by Shapiro will be deemed not only dangerous but simply wrong.

Parenting and Disability: The Final Frontier?

2011-03-26T13:34:00.000-07:00

Last year I delivered a paper at Union College at a conference entitled Disability and Ethics through the Life Cycle: Cases Controversies & Finding Common Ground. My paper was about being a parent with a disability. I dragged my son to this conference. I did this for two reasons. First, he was about to graduate from high-school and would be heading off to college in the Fall. I wanted him to see how scholars interacted at a conference. Second, I wanted him to see me in action about a subject, disability rights, that I am passionate about. We had a good time though he was understandably bored at times. Fast forward to last week. I completed a revised and expanded version of my paper for publication. I spoke to my son about my paper, our experience, and how slowly things grind along in academic publishing. He expressed a modicum of interest as he considered the issue already resolved. The paper was delivered, revised copy submitted, and it was time to move on. The sub text was, come on, Dad, this is boring when he suddenly said “Dad, there is only one thing that bothers me about you being disabled”. Oh no, I thought! Where have I gone wrong and how badly have I screwed him up. I said go ahead and tell me. He replied, “Dad, every chair and couch in our house is uncomfortable and you don’t give a shit.” I replied “Guilty as charged!”

I was tremendously relieved by my son’s comment. In the back of my mind I have always had one worry: would my disability have a negative impact on my son? I think his sole complaint, a valid one I may add, is an indication I did many things right. In short I am proud of myself and my parenting skills. Aside from my pride in the way my son has grown and matured, I look back and know it was not easy. I know only one other paralyzed parent. She is much younger than I am with a kinder garden aged daughter. Based on our conversations, she is not encountering many of the problems I had when my son was a little boy. This is heartening to me. But some things have not changed. First, ever present amazement that a paralyzed person can be a parent. Second, explicit and grossly inappropriate questioning by health care providers that assumes a parent with a disability is not competent. Third, social exclusion of children that extends disability based prejudice. Fourth, exclusionary practices in secondary schools and private organizations that inhibit the ability of a parent with a disability to be actively involved in their child’s life.

The four variables above have been foremost on my mind because of a recent court case. Here I refer to Abbie Dorn who gave birth to triplets in 2006. Complications during the births led to severe blood loss and Dorn’s brain being deprived of oxygen. The result was severe brain damage. There is no agreement on the degree to which Abbie Dorn is aware or able to communicate. A year after the triplets births Dorn’s husband divorced her and moved with the children from South Carolina to Los Angeles, California. The case to me is about two things: first, a bitter fight between the father and Abbie Dorn’s parents. Second, the rights of all parents with what is perceived to be a profound disability. The mainstream media has jumped all over this story. Stories have appeared on ABC national news, AP, New York Times, LA Times and many other news outlets. All focus on the classic tragic nature of the case. Abbie Dorn’s parents maintain their daughter has the right to see her children on a regular basis. The father, in contrast, thinks his children will be emotionally traumatized by seeing their severely disabled mother. The case went to court where after a two week hearing the judge ruled the mother had temporary visitation rights. She will be allowed to see her children three hours a day for five straight days each year in her parents home with the father’s supervision. The mother is also allowed a 30-minute monthly videoconference with her children.

The attorneys for both mother and father are thrilled. Abbie Dorn’s lawyer said the ruling was astounding and a precedent setting victory for all disabled parents. The father’s lawyer was thrilled because the visits will be minimal and supervised. I see no victors in this case. I see nothing that can be construed as a victory for all parents with a disability. Of one thing I am sure: there is a deep division bordering on hatred between the father and Abbie Dorn’s mother Susan Cohen. If there are any victims in the case it is the children who are caught in the cross fire between adults that cannot put aside their differences and put the children’s best interests ahead of their own. There is however a subtext to the discussion of the Dorn case. This subtext is never articulated because there is no doubt Dorn cannot physically care for her children. This is not in dispute. The more general subtext is far more complex: are people with a disability capable parents? The social assumption is no, people with a disability are unfit parents. I know this is the case because I was repeatedly discriminated against as a parent with a disability. My fitness and ability as a parent was always questioned. People were not subtle: health care professionals I met in the emergency room where I took my son when he needed stitches questioned whether I was my son’s legal guardian and asked if I had documents to prove it. I doubt any father walking in the door of an emergency room would be asked the same question.

For years I would tease my friends that the bathroom represented the final frontier in terms of disability rights. Sure I could get in the door but precious few bathrooms were ever accessible. Over time I have had to stop using this line—too many bathrooms are now accessible. I suspect that final frontier may now be the right to be an ordinary parent. By ordinary, I mean “normal”. Normal here meaning physical access and social acceptance at schools and all other organizations associated with youth development. Normalcy is something I never experienced raising my son. Does this sound like sour grapes? In part yes. But my son learned some hard lessons about discrimination other kids read about in books. The discrimination I faced and by extension what he experienced as well made him a more understanding person. He understands discrimination in a visceral way. He directly relates to civil rights movements of all oppressed groups. I wish he did not have this first hand knowledge but I look for the positive elements. And his complaint about my furniture is a sure sign he was in no way negatively impacted. Kids I have learned are amazingly adaptable. No kid has ever discriminated against me. Such bias is learned behavior. They learn how to be afraid or discriminate from their parents. I see this lesson being taught all the time. For instance when I go to the grocery store parents inevitably grab their kids hand and state, “watch out for that man in the wheelchair”. The message sent to the child is clear: people with a disability are dangerous, they have a tainted social identity. Now this is something I would like to see discussed. Rather than the tragic elements associated with disability. For I see no tragedy in disability just a group of diverse humans.

Sports Imagery: A Damaging Article

2011-03-22T07:29:00.000-07:00

I follow two sports closely--hockey and baseball. I love hockey and have a nostalgic interest in baseball. For me, money has ruined baseball. The players make so much money I find it offensive. I also object to the cost of attending a baseball game. Last year I went to Citifield where the NY Mets play--it cost me $200 to walk through the gate. I did not have great seats, just good seats. Sure I had fun but come on. $200 to see a ball game.

Baseball has history and a connection to American culture that is unique. To understand baseball one must understand Americans. The sport reflects our culture. Given this I find all sorts of meaning in baseball writing. I thus read far more about baseball than I ever watch. Yesterday I was reading about a San Diego player I had never heard of, David Newhan. Few people have heard of him because he is a journeyman, one of the many faceless ball players that populate the game. So why am I writing about this man? There was an article in Yahoo Sports The Post Game--"Old Ball Player, New Soul". Apparently Newhan broke his neck in a surfing accident. He was not paralyzed but came very close to being a high level quad. This is a good hook for any article but especially about an unknown baseball player. What shocked me however was the introduction to the article. It was gripping in all the wrong ways. Judge for yourself. Here is the opening:

"It was a simple act. David Newhan held open a restaurant door for a person in a wheelchair. And yet he was overcome by emotion. Gratitude gave way to longing, longing gave way to resolve, resolve circled back to gratitude, and then he wanted nothing more than to find the nearest ballfield, crush a fastball and dash around the bases.
As the wheelchair rolled past, Newhan silently thanked God for his own miraculous luck."

Let me see: I can open my own door thank you very much. I am also a human being. I am not "the wheelchair" that rolled past. How dehumanizing. Here is the blunt message: using a wheelchair is horrible, a tragedy. You do not see a human using a wheelchair you only see the wheelchair, the symbol of all that can go wrong. What are we expected to feel? Why pity of course. Pity the poor bastard that is confined to a wheelchair. This sort of dehumanization makes me furious. How can I ever expect to be treated equally when such destructive sentiments are expressed. Here is what I thought could have been written instead. The player in question takes an interest in disability rights and advocates for people who were not so lucky to avoid a paralyzing injury. This man in his spare time and from his privileged position helps people with disabilities attend or participate in adaptive baseball. Now that article would be worth reading and send a good message. But we rarely if ever see such an article. Charity sells papers. Tugging at people's heart strings gets people to read. Who wants to write about civil rights of people with disabilities. No major newspaper I ever read does this. This void can be overcome but we need people with disabilities to be writers, editors, or employed in some way throughout each section of American society. Without this I do not see an end to the dehumanized status of people with a disability in American society. Not a happy sentiment for sure but accurate.

Wheelchair Industry: Quality Absent

2011-03-21T14:12:00.000-07:00

I opted out of dealing with wheelchair companies 25 years ago. This was an easy decision to make. Manual wheelchairs as most readers are likely to know are costly--easily exceeding $3,000. What does one get for this money? Not much. I think the vast majority of wheelchairs manufactured today are poorly designed and contain inferior parts, especially things you do not see like wheel bearings. No mass produced wheelchair can withstand the rigors of every day use. Worse yet, the services wheelchair companies provide is laughable. Durable medical equipment vendors provide dismal service at best. Do not believe a word RESNA, Rehabilitative Engineering and Assistive Technology Society of America, states about so called seating specialists. There is a shocking lack of competent people who can help consumers pick out an appropriate wheelchair. To be fair, I would include specialists in rehabilitation such as occupational and physical therapists among those that do not possess adequate knowledge. Getting the right wheelchair is extremely difficult. Mistakes are costly and here I am not just referring to the financial implications. An inappropriate wheelchair can result in a myriad of health related problems. Specialists can be found--most likely at larger rehab centers but I have never found one myself. I will acknowledge some people are well versed in wheelchair technology and have the experience of working with an array of people that need a wheelchair. Sadly, most people who have a spinal cord injury do not have access to these professionals. Adding to the problem is the fact the sort of comprehensive long-term rehab I experienced in the late 1970s is a thing of the past. Sure wheelchair technology and medical care have undergone a revolution since I was in rehab but there are disturbing aspects to the wheelchair industry and modern day rehab. Frankly, most people leaving rehab centers today are grossly unprepared to care for their bodies and the social response to their newly disabled bodies.

These thoughts have been coursing through my brain after reading a wonderful article in Sports N Spokes: "Chair Shake-Up" by Rory A Cooper and Rosemarie Cooper. This is a highly unusual article for the magazine to publish. It is filled with insightful observations and contains a social critique. Do not misunderstand my comment as a cheap shot at Sports N Spokes—it remains the best magazine published about adaptive sports. What separated this article from others is the critique of the wheelchair industry. This critique takes place at a critical juncture in time: the demise of high-end wheelchairs. This is an alarming phenomenon even if it does not directly affect me.

In 2010 Invacare and Sunrise Medical, the biggest manufacturers in the business, each stopped producing most of their titanium wheelchairs. They now make a plethora of crappy, i.e. cheap, wheelchairs that can be bought at a discount on line at sites such as SpinLife.com. The dearth of high-end wheelchairs however is symbolic of a larger problem--people who use a wheelchair are simply not valued. By high-end wheelchair I am referring to a wheelchair that is lightweight and tough--one designed to last a decade or more under rigorous everyday use. The rigorous use I am thinking involves extremes of weather and terrain as well the ability to absorb the abuse dished out by airlines and the constant assembly and disassembly required to get in and out of the car. Such a wheelchair has high quality wheels, rims, hubs, and a top-notch paint job (powder coating). Most mass produced wheelchairs will crumble under such use.

How do I test a wheelchair? I take the frame and throw it out a third or fourth story window. If the frame survives it is good to go. I sincerely doubt any wheelchair made by the mega conglomerate Sunrise Medical can withstand my quality test. This is a huge problem. What I wonder does a young male or female 20 years old with a spinal cord injury do? We guys, and yes gals, who use wheelchairs our entire life depend upon our wheelchairs. When they stop we stop. By extension, this has me wondering how do newly paralyzed people learn to cope with a spinal cord injury? When I was injured I learned far more from my paralyzed peers than I ever did from the doctors, nurses, and therapists charged with my care and supposed rehabilitation. Hence when I went to college fresh out of rehab the best education I got in terms of how to cope with the real world came from my peers.

Paralyzed people today do not get much time in rehabilitation. When I was paralyzed rehab stints of 6-9 months were common. Today, if you are lucky you get three weeks. No one in the olden days was sent home until they had their own wheelchair. When that wheelchair arrived it was a glorious day! Today, people are routinely sent home with a loaner wheelchair, a total piece of junk. They struggle as a result. The vast majority end up back in the hospital. Is this progress? Well no. This is done at the behest of insurance companies and affects not just people with spinal cord injury but a host of people foremost among them the elderly. I can only conclude our existence is not deemed important. You get a few weeks of rehab and if you do not progress it is off to the nursing home. Indeed, the average age for people admitted to nursing homes is now dropping. And who ends up there? People with spinal cord injuries. Do they get proper rehab? Not a chance. They are warehoused and unlikely to ever emerge from the institution they are sent to.

I mourn for my newly crippled peers. They are not given a fighting chance to succeed. In fact, they are set up to fail. How can a newly paralyzed person succeed with a crappy loaner wheelchair and three weeks of rehab? How can they learn how to manage their bodies without talking to those that learned to adapt long ago? The answer is they cannot. I learned how to manage my bladder and bowels by talking to other paralyzed guys. I did not learn one practical thing in the hospital. What I found in the hospital and subsequently in college was camaraderie. I learned much from peers and we were part of the pre ADA generation that had no civil rights and in its absence railed against prejudice. Not all of us succeeded but we all had a fair chance. That is all I want for paralyzed people today—a chance, a legitimate chance.

The only way paralyzed people can function is with top-notch wheelchairs. I was very lucky in that I was paralyzed at a time when wheelchair innovation was actually taking place. The monopoly that Everest & Jennings enjoyed for decades was broken in the late 1970s. For the first time in history paralyzed people were given a real choice when it came to wheelchairs. From this void emerged rigid frame wheelchairs that dominate the market to this day. What I am waiting and hoping for is another such revolution in choices. I do not see that happening though. Instead the wheelchair market is taking a giant step backward—pun intended. Wheelchairs are not designed for rigorous use but to the dictates of insurance carriers. Those insurance carriers do not care one iota about the quality of life of people that use wheelchairs. I care and am very sad. I figured a way around the practical problems of inferior designs and lousy service. My solution though is a solution for one—me. This bothers me for I worry. How do my paralyzed peers can function when restricted by insurance carriers and a lack of top quality choice? This is an issue that must be addressed at the highest levels of industry and government. We paralyzed people need access to not only quality wheelchairs but also technological innovations. Without it we are doomed to fail. I for one do not accept this reality.

NYT Grim Reading about the Margins of Citizenship

2011-03-13T12:10:00.000-07:00

On March 12 the New York Times published a long article that reminded why the paper is read nationwide. Once in a while the NY Times publishes outstanding articles. Yesterday had one of those outstanding examples of first rate journalism. Here I refer to a long article by Danny Hakin, "At State-Run Homes, Abuse and Impunity". No new ground was broken in the article but it was shocking and gripping reading. A New York Time investigation over the past year revealed what many do not want to know much less acknowledge: there is wide spread abuse at group homes run by the State of New York. What sort of abuse? Residents of groups homes have been raped, beaten, taunted, and physically abused. The abusers are rarely if ever convicted of the abuse. State records show that of the 13,000 allegations of abuse in 2009 at state operated group homes fewer than 5% were ever referred to law enforcement. The people being abused are the most vulnerable--men and women with Down Syndrome, Autism, and cerebral palsy. Not much has changed since 1972 when Gerlado Rivera made a name for himself by filming the horrific conditions at Willowbrook Institution. The images were searing. A nationwide scandal resulted and the forced institutionalization of people with a host of disabilities slowly came to an end. In its place of large institutions that warehoused hundreds of people we now have a complex and diverse distributions of small group homes. To me, these are nothing more and nothing less than mini institutions. I am not convinced such group homes are better than the closed institutions that dot the rural landscape of New York. The abuse of large numbers of individuals housed in institutions has ended. In its place small scale and widely spread abuse exists.

I urge readers to look at the NY TImes article. It is grim reading. It should make one angry--deeply angry that those least able to protect themselves are being abused. The abuses are nothing short of horrific. It makes one question humanity. It also made me upset we as Americans have never really had a national dialogue about how to care for people with profound cognitive and physical deficits. If the article in question posses more than a grain of truth we as a society are failing--a failure that dates back a century or more. When I read the story I was moved to tears. How can people abuse others and live with themselves. It is nothing short of evil. But evil lurks in the hearts of many. To counteract such evil we need to openly discuss how we should care for people who cannot care for themselves. I would argue our society has the moral responsibility to do this. I have little faith the courts or politicians can do anything to ameliorate the situation unless a great number of citizens all rise in protest. I do not see this happening either. Why am I so pessimistic? I have read too much about ugly laws, institutionalization, legal abuses, and cases such as Buck v Bell. When I read the story my first thought was that in a horrible way the article highlights much of what Allison C. Carey wrote in her insightful and important book On the Margins of Citizenship. People with cognitive disabilities have historically been marginalized and excluded. Segregation remains the norm for children and adults with profound cognitive and physical impairment. Sure we have group homes in communities but that does not mean the residents are welcome. I live near two group homes and I have seen these people escorted to the local super market in a van. Sadly but hardly a shock to me, the supermarket empties out in world record time when group home residents appear. There is no effort to hide the bias or distinct and palatable level of discomfort. This is an indictment on us not the residents. These people inalienable civil rights are violated on a regular basis. So I reiterate, not much has changed since 1972. But I would go farther, not much has changed since 1927and the notorious Buck v Bell decision written by none other than the widely praised jurist Oliver Wendell Holmes. The denial of Carrie Buck's rights are a low point int he history of jurisprudence. Holmes gave support to the state's authority to deny the most basic civil rights including the rights of privacy, parenthood, and bodily integrity to people with cognitive disabilities. The frightening decision is worth re-reading and in part Holmes wrote:

We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for the lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or let them starve for imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the fallopian tubes... Three generations of imbeciles are enough.

While shocking to read in retrospect, are we really doing a better job caring for people with cognitive and physical disabilities today? I would argue the NY Times article provided a lurid and resounding no. I frankly cannot stomach the details provided by the NY Times. It is just too horrible for me to contemplate. Instead I rail against American society that tolerates such abuse and has done so for decades. The violation of the basic rights of a group of people is unacceptable. All agree with this sentiment but I do not see measurable social change. We need to understand such marginalization and consequent abuse has not substantially changed since 1927. In every era ideas about people with profound cognitive and physical disabilities have been put forth, solutions offered and changes made. But none of this gets to the core issue: that these people have inalienable rights that must be respected. Any discussion must be framed within this larger context.

Cure for SCI and Being a Bad or Good Cripple

2011-03-11T08:30:00.000-08:00

Many people do not get why I think of myself as being a bad cripple. The moniker I have used is a puzzle. I always hear the refrain "but you are such a pleasant person". I am indeed a mild mannered though a bit intense person. Although it is impossible to ever really know, I would argue I am easy to be around. I truly value stability in personal relationships and in my life as a whole. Hence when my niece who is extremely disability aware hears me use the phrase bad cripple she cringes. I am a bad cripple because I am violating certain social norms. People with a disability you see are supposed to be miserable. We are expected to be constantly seeking out a cure. We should be spending all our time working toward this goal with various doctors and rehabilitation centers. These doctors are supposed to be brilliant, devoted to helping the less fortunate. The more exotic and innovative the cure the better we people with disabilities are perceived to be. Hence if you want to raise money and go to China for dubious stem cell treatment you will be lauded for your efforts. The risk involved and the long odds to success in terms of cure are not relevant. You are doing your best, searching out every possible cure and damn the risk you are going for it. You are a hero! Think Christopher Reeve as the archetype the media and society lauds--he was the classic good cripple. Who is the is the archetype of the bad cripple? People like me that express no interest whatsoever in cure. I am not against cure for spinal cord injury. Read that sentence again please. Such research is important and worthwhile. I support the efforts of researchers assuming they do not use images and notions of pity to raise money. At a personal level however, I find such research irrelevant to my life. Why undergo treatment that has no track record, the long term implications unknown, and results iffy at best. I am quite content with my crippled body. I like my body. Would I prefer not to be paralyzed? Of course. But I would also like to be stunningly handsome and am not. The simple fact is there is nothing i cannot do that a person who walks can do. Paralysis has not stopped me from getting an outstanding education, publishing my work, teaching, getting married (and divorced), fathering a child etc. All these ordinary experiences are thought to be out of the realm of people with a disability. Hence it is not paralysis that has been the bane of my existence but the way people react to my paralysis and wheelchair use.

I think we as American are more comfortable with the good cripple. The good cripple wants nothing more than to overcome his or her disability. The good cripple accepts that the normal body, the bipedal human body, is the cultural ideal. The good cripple accepts a socially inferior position in society, happy for a hand out and all too willing to exploit their diminished social status. Need to raise money? Just get up on stage and say I want to walk again. People will cheer your efforts and write check. Enter me, the bad cripple. I am, please brace yourself, happy. Oh, the nerve! Worse yet I do not have an interest in a cure for spinal cord injury. What do I expect? To be treated as a sentient being. I consider myself to be equal to my bipedal peers. This is a social afront. Why imagine the nerve? I expect the country to be accessible. When I confront needless architectural and social barriers I get angry. I have rights and I assert them. This makes me about as popular as Oliver Perez among NY Mets fans. No one wants to confront an angry cripple. He should be happy for society largesse. He should be pining away for a cure. He should not be upset we the almighty and powerful bipedal humans forget to include access. We are ever so sorry. Come back another day and if we deem it worthwhile we will make our facility accessible. My reaction is blunt: screw you. You are breaking the law and an old one at that. I do not want a hand our or charity, I want to be treated with equality and respect. Many do not know how to react to this firm assertion of my inalienable civil rights. The travel industry, in particular mass transportation, seems the most oblivious to disability rights.

What I find perplexing is why? Why are disability rights perceived to be different, vastly different to all other important civil rights we as Americans value. Separate in terms of race and education is a given. All are taught about Brown vs. the Board of Education Supreme Court decision. It is the bedrock of our public education school system. But how come separate is acceptable when it comes to transporting and educating children with a disability? I saw gross violations of the ADA at the public school my son attended, violations that impeded my ability to be an active and involved parent.

In one of my favorite memoirs written by a person with a disability Stephen Kuusisto's Planet of the Blind he wrote that "on the planet of the blind no one needs to be cured". Wow! Wow, not because of the beautiful prose but rather the affirmation of the civil rights of blind people and by extension all others with a disability. Kuusisto made this same point in a post at his blog Planet of the Blind yesterday. The post in question, Project 3000 and Post -Molecular Medicine at the University of Iowa's Institute for Vision Research, discussed cure, the medical model of disability, disability rights, and the care cure divide. He closed this post with a quote from his colleague Edwin Stone.

“Blind people need to go to the eye doctor for general ophthalmological care—blind eyes are still important eyes.
One day Ed said to me:
The evangelical disabled person might adopt the attitude, ‘Why do I need to be cured? I’m fine as I am,’ while the evangelical curing person might adopt the posture, ‘Why spend any resources on figuring out ways to accommodate visually disabled people? We ought to spend time trying to cure them,’” “It’s grossly inappropriate that these two concepts are so separate. There’s no reason we can’t pursue both—aspire to reduce blindness through surgical or medical treatments, while simultaneously being sensitive to the needs of people who are visually impaired and working to help them in every way possible.”

Amen, care and cure are not mutually exclusive. Kuusisto thinks this is taking place in ophthalmological care. I do not doubt his assessment. However, I would contend such a nuanced view has not extended beyond this field and is far from being accepted in the medical industrial complex. For people with a disability to be accepted as equals the medical model of disability must be rejected and a far more nuanced understanding of physical difference must be accepted. I do not see this happening any time soon when it comes to spinal cord injury. Kuusisto thinks this revolution is underway. Sorry but I disagree. I disagree because i have had way too much contact with the medical industrial complex lately from wound care to urological surgery. One theme, a constant, has been a gross lack of physical access and a social understanding of the nature of disability. Some of the problems are purely medical but the vast majority of obstacles are social. Simply put, access in the broadest sense of the term is not valued or desired. Much money is spent on what I call window dressing--what people with no experience or knowledge of disability think is important. Hence we get lots of electric door openers and a multitude of accessible bathrooms all located in the wrong place. Why are such errors made? Again, simple: not enough people with a disability are woven into the fabric of society. We have no voice when decisions are being made that impact us directly. This is a problem that will take many more decades to rectify.

Weighing in on Space

2011-03-07T11:47:00.000-08:00

When people, okay when women, visit my home I am made to feel as though I have failed home decorating 101. These unnamed women are always polite and diplomatic. They will will inevitably compliment my house as being tasteful, neat and clean but there is always a pause. This pause is followed by statements such as my home lacks a "woman's touch", the absence of window treatments, drapes or some other fashion failure. I don't mind this one bit. No woman lives in my house and it does lack a feminine touch. I am not exactly surely what that feminine touch means in terms of how a home looks but its absence is apparent. I must confess however I do not like living in my living room. I have what can only be deemed an ugly clinitron bed in my living room. On my very nice leather couch I have my medical dressings spread out. All the furniture is out of place and at night I wish my house and body would return to normal.

As I feel asleep last night I was truly bothered the way my house has been rearranged while healing from my wound. But as I began to feel sorry for myself I thought--knock it off. I am lucky to be in my home. A mantra I often repeat. So why did my temporary living arrangement bother me? The answer came to me this morning reading Tobin Siebers book Disability Aesthetics. Siebers attempts to redefine both disability and aesthetics. While much of the book was not to my taste in part because Siebers looks at much art which I have little interest in. One small section of Siebers book did hit home--here I refer to the section on "Hysterical Architecture". I have often been struck at how violently people react to accessible space. I have heard again and again how access and durable medical equipment is ugly. I have heard heated arguments about how access "mars" a building or is an "eye sore". It dawned on me that while i obviously reject such beliefs I have nonetheless incorporated them in my thinking. When I renovated my house I did not want the ramp to my home to be too visible. I did not want my bathroom to look like too medical even if it meant being inconvenienced. Part of this concern was financial. To sell a house it must look aesthetically pleasing. Access I have learned is rarely if ever aesthetically pleasing. What has struck me as an obvious problem is that access is "ugly", an "eyesore" because we do not value said access. Access when constructing a building always appears to be an after thought--something that must be forced into an already beautiful design because of the law. And we know many hate the law, especially the ADA. That pesky law bankrupts small business and costs schools a fortune.

Given the above I was struck by Siebers following observation:

It is as if the public interprets ramps, accessible doors, and signage for the disabled as symbols of disability that require a mustering of defense mechanisms. In no time, plants and flowers clutter wheelchair ramps, handicap signs are tucked away, and decorative rocks and wood chips block accessible walkways. Nature abhors a vacuum, and society treats handicapped parking spaces and accessible pathways as empty paces to fill: locales marked by accessibility inevitably become handy collecting points for trash, building materials, or delivery trucks (pp. 79).

Society is indeed very defensive. It is as though the mere presence of accessible entrances is an afront to the delicate sensibilities of society. The presence of the disabled body and hence access for that body is unwanted. Every person I know with a disability can relate to the Seibers quote above. We have all had experiences where the space for us has been violated. Trash in wheelchair lifts are a common problem. Snow plows dump snow in handicap parking. Delivery trucks block curb cuts and fill up handicap parking spaces. Handicapped seating is used to store extra chairs and supplies. Signs if present are obscure and often grossly wrong. The list of violations is seemingly endless to me. Indeed, violations in terms of equal access are the norm. When traveling I always assume problems will arise and sadly I am almost always correct. What all these seemingly minor violations indicate is that we people with a disability are not valued nor welcome. We are ugly, a reminder of all that can wrong, a tragedy even. I am not sure how to change this societal mindset when even I am guilty of incorporating it. I will thus cut myself some slack knowing that my wound will heal and my ugly bed will find its way into its proper place--my bedroom. So for now I remind myself to be content with my existence even if it does not exactly please me.

Conference Day

2011-03-06T10:49:00.000-08:00

Yesterday I attended and presented a paper at the 13th Annual Women's History Conference at Sarah Lawrence College. The title of the conference was Breaking Boundaries: Body Politics & the Dynamics of Difference. I am not drawn to academic conferences like I was earlier in my career. I now go to few conferences and only those that are of particular interest. The Sarah Lawrence conference was of great interest to me as the subject matter was of interest and it would not be anything like overwhelming national meetings of anthropologist. The fact it was close to home added to its appeal. I also hoped to meet Susan M. Schweik author of the Ugly Laws. In my estimation Schweik's work is critically important to a little known subject--ugly laws that swept the nation and profoundly affected people with disabilities. I heard a number of very good presentations and overall the conference was well worth my time. It reminded me how much I miss interacting within the academic arena.

My paper was about my experiences as a wound care patient and an adaptive skier. Below is my paper.

“Disabled and Proud” and “Piss on Pity” are two popular slogans used by disability rights activists. These words in my estimation fail to resonate with the general public thereby highlighting the divide between those with and those without a disability is as profound today as it was 20 years ago when the Americans with Disability Act was passed. While the law is now firmly on the side of people with disabilities, disability rights is not valued or equated with other important civil rights legislation. This great cultural divide leaves us with stereotypical images and notions—the person with a disability as a tragic figure or conversely the “super crip”, a person that overcomes a given physical deficit. Another level of complexity exists within academia where two opposing theoretical constructs dominate discourse about disability. Here I refer to the medical model of disability versus the social model of disability.
Despite fundamental flaws, I have come to accept the social model of disability because it reflect my belief that disability is primarily a social problem. This is a minority viewpoint. The average American has been taught overtly and subtly that disability is bad, a tragedy even. Doctors on the other hand perceive disability as nothing more and nothing les than a physical deficit. No consideration is given to the social implications of disability, its cost, or the gross lack of access within medical facilities. Of course there are multiple exceptions to the general observations I have made. The point I am trying to stress is that given the general cultural perception of disability one would expect acute care hospitals to be an amenable environment for a person with a disability. In contrast one would expect the sporting arena, one that places great emphasis on physical ability would be hostile to the inclusion of people with a disability. I contend the exact opposite is true.
Based on my experience as a person with a disability and a parent, I have learned to fear not only doctors but hospitals. As a parent with a disability, many health care professionals assume I cannot rear a child. To be blunt, I am not parental material in their estimation. I am fearful of critical care hospitals because there is no doubt I am perceived to be an expensive, complicated, and time consuming patient—one most likely to have poor insurance and lack a basic education. Sadly these assumptions are often true. No minority population in the United Sates is as disenfranchised as people with a disability or shut out of accessing adequate health insurance. In short, acute care hospitals present a hostile social environment dominated by many architectural barriers. In contrast, I have found adaptive sport program especially those associated with skiing and kayaking to be not only welcoming but present few if any architectural barriers. This phenomenon is fascinating to me in part because it is contrary to accepted cultural beliefs.
My views are based on my own experiences as an adaptive skier and kayaker and most recently as an in and out patient at a critical care facility. In September 2010 I discovered a stage four pressure sore, the most severe wound possible. The wound was grossly infected and I had MERSA, a potentially lethal anti-biotic resistant infection. Within days of hospitalization I experienced not one but two extremely bloody debridements and required multiple blood transfusions. Frankly, I was deeply embarrassed by my wound. I knew such wounds are serious and can be life threatening. I have successfully avoided such wounds for 32 years, a rarity among paralyzed people who are often plagued by pressure sores. I was naïve enough to be obnoxious in my success at maintaining my skin integrity. I mistakenly believed I was smarter than other paralyzed people. In the last six months I have learned I am not one iota different from other paralyzed people. What separated me was access to first class medical treatment and an excellent education.
What struck me upon admission in the fall was the stunning lack of knowledge on the part of those charged with my care. I felt like a human science project—a rare species that descended upon the hospital. The focus was not on getting me better but rather what sort of “special needs” had to be met. The subtext to the question about “special needs” quickly became apparent—how much extra labor would I require. Worse yet, I had a self inflicted wound that was easily preventable—not my words but those of the examining physician. I was what doctors refer to as “gp rubbish”. Recovering from a stage 4 wound is a long, slow, and agonizing experience. I spent three weeks in the hospital and when medically stable was given 48 hours to either transfer to nursing home or purchase a clinitron bed and arrange around the clock care—neither the bed nor round the clock care was covered by insurance. For once in my life I was grateful to come from a large Irish catholic family. I would not be able to sit up for at least 3 to 4 months and I quickly arranged to have my siblings meet my basic needs. Insurance would cover wound care but nothing else.
Wound care is a unique world. A dizzy array of people need wound care. Elderly people, people with cancer, the terminally ill, people who had major surgery, people who shattered bones, and at the bottom of this list are people like me. We are the least desirable patients. Our wounds take far longer to heal and require careful monitoring. We also require physical access. Access I can assure you is not solved by plastering little blue wheelchair logos all over the place. Instead it requires not only physical access but use of high priced technology such as wound vacuums and clinitron beds. We thus require a significant financial investment. Hospitals are loath to spend such money—even wealthy suburban hospitals. As a result, hospitals do not own much of the equipment needed. They rent the clinitron beds and wound vacuums. Admission and treatment becomes complex, placement in a hospital difficult at best. Extended waits are common and people suffer as a result. For instance when I needed a clinitron bed it took the hospital 24 hours to locate such a bed and have it delivered. Upon delivery no one knew how to use the bed or turn it on. I shuddered to think what would happen if the bed broke.
As one who spent a decade in the 1970s on neurological wards in the pre technological era, I am amazed at the technological advances in medicine, foremost among them wound care. My severe wound without a wound vacuum would take one year to 18 months to heal. With a wound vacuum it is almost healed in six months. This is remarkable technology as is a clinitron bed that enables one to be in one position 24 hours a day for weeks at a time and not have a skin breakdown. These technological marvels come at a price—they are costly in the extreme and beyond the means of too many people. My wound has taught me many things about this technology and what one bioethicist has labeled “taming the beast”. The beast, technology determines care, the human component is not valued. In the six months I have spent healing I learned much about dependence, social isolation, economic marginalization, and a caste system in medical care.
This is all a far cry from my experience as an adaptive skier and kayaker. Adaptive athletes provide great fodder for the media. Visuals usually involve a profoundly disabled athlete doing something miraculous. What is celebrated is not the athletic or personal achievement but rather the ability of the disabled person to overcome a physical deficit. The more profound the disability the better the story. The negative portrayal of disabled people is not only oppressive but also reaffirms that nondisabled people set the terms of the debate about the meaning of disability. The antiquated images of disability resonate with the general public and reinforce economic, political and social oppression experienced by people with disabilities. In terms of sports, it is assumed that a physical or cognitive deficit precludes not just an interest in sports but the ability to participate. What most fail to realize is that the dichotomy between disabled and nondisabled is a fallacy. Life is simply not that definitive.
My wheelchair is the ultimate symbol of disability, a message that ski resorts and people that ski seemingly did not get. I am relatively new to skiing in large part because I am a direct beneficiary of a technological revolution in adaptive sports equipment. Adaptive skiing started in the late 1970s but did not become user friendly until the mid to late 1990s. The gear, or rigs as they are called, are akin to Ferraris. There is no slope a paralyzed person cannot ski. The elite of these skiers are the men and women seen on the X Games. But I am far from an elite athlete. I am your classic weekend warrior. I am content to go up the lift and ski down the intermediate trails at my own pace—and I will admit I have one speed, fast. For me, this is an accomplishment—an ordinary accomplishment I share with bipedal skiers. I have put much thought into why I enjoy skiing. Sure the activity itself is fun and the views from the top of a mountain magnificent. But I quickly realized when I skied no one cared one iota that I was a sit skier. The focus of all my conversations was about skiing: we discussed the snow, slope conditions, how fast did I ski and which trails were in the best. No one has ever asked me why I use wheelchair or anything about the nature of my disability.
The complete lack of interest in the nature and cause of my disability is unique and fascinating. Why, I wonder, does it seem as though skiers have no interest whatsoever in my disability. I am not alone in wondering about this. I have spoken and interviewed many adaptive skiers and their respective spouses and children. In addition, I have interviewed adaptive sports program coordinators at resorts throughout New England. All report the same thing: one’s disability is not socially significant on a ski slope. Exceptions do exist however. Some mountains do not want adaptive skiers. Adaptive programs are utterly absent at some resorts and adaptive skiers report they have encountered stiff resistance to their existence. This is quite unusual and appears limited to elite resorts. The result is a network of information willingly shared among adaptive athletes. Adaptive programs are hooked into this network of information and base their programs at resorts that are open and welcoming. This is wise as the space used by adaptive programs to assemble is donated by the mountain.
The result of this network of information is that adaptive skiers know where to ski. Hence adaptive programs become a highly visible presence at certain mountain. For instance New England Disabled Sports at Loon Mountain in New Hampshire has a large program and has produced para Olympic and X games competitors. For a weekend warrior such as myself this knowledge is vitally important given the expense of adaptive skiing. An entry level sit ski costs about $3,000 and a high end rig can cost well over $8,000. This does not take into consideration any other costs such as clothing, travel expenses, or gear that does not last long such as outriggers. Skiing is expensive for all but prohibitively expensive for adaptive skiers. Many foundations exist that will purchase sit skis for people. In addition all adaptive programs charge on a sliding scale and have scholarships available. In short everything that can be done on the mountain is being done. The biggest challenge then is simply to get people to the mountain itself. This is beyond the budget and ability of many people with a disability. The latest unemployment figures for people with disabilities remains unchanged—it has hovered at nearly 70% for the last 20 years.
Never did I think I would gain such a unique sense of freedom skiing. Here I am not referring to the sensation of skiing itself but the social freedom or equality I feel when on the slopes. It is the only place I have felt normal or free from the stigmatized identity that goes hand in hand with being a person with a visible disability. For a person such as myself that came of age before the ADA existed it highlights the impact and failure of the law. We Americans pay lip service to the ADA and adhere to the law when convenient or to be blunt when it does not cost too much. What is painfully evident in the post ADA era s a growing frustration and anger about the law, specifically what the ADA is supposed to do and the reality people with a disability experience. Our country in particular the medical industrial complex remains grossly inaccessible and adheres to an antiquated medical model of disability. Sure hospitals meet the letter of the law but it is not people with disabilities that determine what a “reasonable accommodation” is. Discrimination then is alive and well but in a sanitized ever so polite form.
Rather than end on a sour note, I would posit that sports has a central place in disability rights. It is one of the few activities where people with a disability effectively network. But this networking is done without any connection to civil rights efforts or such groups as ADAPT. I would argue we people with a disability that are sports oriented need to reconnect with our roots. And those roots are directly tied to vigorous civil rights efforts. More generally we need to connect with disability studies scholars who have ignored the importance of adaptive sports. If we can connect disability rights, disability studies and adaptive sports we can not only improve physical access but negate the stigma all too often associated with disability. In short, there is a chance we can make disability cool. I may be naïve in this assumption but we need to start somewhere. In order force people to think differently about disability we must go against the social grain. We must break social boundaries and expectations. This thought came to me last season when my son made a sign for my wheelchair that I left on the seat at the base lodge. It said simply “Gone Skiing”. I observed many people trudging along with ski gear look at the sign and do a double take. Many smiled but it was clear the sign made them think and I hope question assumptions they had made about people who use a wheelchair.

Hydra Versus Cyborg

2011-03-02T13:07:00.000-08:00

I have a strong fascination with body art. I have always been captivated by tattoos and to a lesser extent non traditional piercings. In part my interest stemmed from the stigma attached to both the disabled body and people who knowingly modified their body via tattoos. In the last twenty years society has experienced a veritable revolution in disability and body art. Today we people with a disability are protected by law, civil rights legislation known as the ADA. Indeed, we have had 40 years of progressive legislation all designed to empower people with disabilities. In body art, tattooing is now acknowledged to be a fine art. Tattoo artists and their customers are no longer restricted to bikers, sailors and other social outlaws. Today anyone and everyone seems to have at least one tattoo. I love this change and hate it at the same time. It is great people are more open to body art and always look forward to seeing art literally walk by me. However, I mourn the way tattooing has been commodified by television shows and mundane things like housewares and clothing . Likewise, some time I miss the old days when I fought an up hill and pitch battle for access and disability rights. Don't get me wrong, equal rights is still a battle for people with disabilities but an ever so polite one. How does tattooing and disability relate beyond the concept of stigma? How we perceive the body, the tattooed body, disabled body and modified body in the broadest sense of the term has undergone a radical transformation. We take for granted the incorporation of the body and technology. But how we define, value and perceive that technology is what captivates me. I think my wheelchair is the essence of cool. Others see it as the ultimate symbol of disability. I think my mother's prosthesis is also cool. Others look at the loss of a limb and not the technology that replaced it. This too adds a layer of complexity. The mixing of technology and the body, much of it from the health industrial complex is dependent upon how we value a given device. Cochlear implaints for instance are valued and an entire industry now exists around their usage. Do we value interpreters for the deaf? Not so much. How about hearing aides for the elderly. No this is not valued or covered by health insurance. Who cares if the elderly can communicate.

The thoughts above were prompted by a post by Wheelchair Dancer on February 27 entitled Crip Anatomies. She wrotte:

"I am beginning to be disturbed by the almost universal insistence that my body, my flesh body that is, disappears when I gain an assistive technology body part. I would rather begin to investigate myself and my movement potential as a kind of hydra. And I do mean hydra instead of cyborg. In cyborgs, the mechanical and the fleshly are distinct but fused into one humanoid and recognizably humanoid organism. There's no excess; technology replaces the flesh bits. Hydras seem to allow for the possibility of the technical and the flesh to continue to exist together, even if they organism they jointly create is now akin to that which traditionally has been relegated to the category of freak or monster."

I love the idea of hydras. Something about cyborgs have always bothered me. Perhaps it is my horror of Star Trek Borg like organisms or cyborgs from the Terminator movies or if you want to go farther back to Frankenstein. The essence of these cyborgs was the destruction of the creatures humanity. In some ways my wheelchair does the exact same thing--it destroys my humanity because all people seem to notice is the wheelchair and not the human using it. Hydras seem to incorporate both the human and technological component. Rather than seeing a freak or monster I see a unique human being, one that has done what we human beings have always done--adapt. I am paralyzed and I have adapted via my wheelchair. Blind people adapt via use of a guide dog. These sort of observations could go on and on. The point is we as a people have melded technology and the human body in ways never dreamed possible 20 years ago--roughly when the ADA was passed into law. What we are slow to change is not technology but how we perceive those advances and inventions. It is here where the problems lies. We value cell phones, computers, the internet, televisions and gaming platforms. One can access these technologies with ease. Why our choices are diverse and as varied as the colors of a rainbow. How important is this technology? Our economy would crumble without it. Now try and access the usage of a wound vacuum such as the one I used or purchase a wheelchair. All of sudden our choices are severely limited. Wound vacuums are not covered by insurance. Wheelchairs are covered but you get a stripped down model that will last a year or two. And we are talking about high priced items. Wheelchair can easily top $8,000 to $10,000 and more. Try and service a wheelchair in less than 24 hours and you are out luck. What happens if yoru cell phone or computer breaks? It can be serviced or replaced at a host of places. Just today I saw that happen when I bought a fancy new cell phone. This to me is an obvious social issue. One that requires a social revolution comparable to the technological revolution that has already taken place. I for one hope to see more hydras working on the problem.

Don't Worry Be Happy

2011-02-27T11:10:00.000-08:00

Okay, I am steeling the title of this post from Bobby McFerrin's well-known song. I love this song as I take worrying to an Olympic level. I am in other words a world class worrier. My worries have worries. I worry if I am not worrying. I worry about everything. The apple does not fall far from the tree--my father was a gifted worrier too. One thing I do not worry about it is being happy. Sure the last six months have been very hard. Yes, I worried I was slipping into an abyss of depression. Not so now. My good days far out number the bad. I am verging on healed and am busy making plans for the future. But prior to my wound I would classify as a happy person. Yes, worriers can be happy. I was not always a happy person by nature. My happy view of life was one of the few good by products of divorce. I was always a planner--I planned years in advance, set markers to reach toward given goals and was driven. I remain a driven person but do not plan my life or set rigid goals to reach. Raising my son taught me so much about life and happiness. But here I am meandering too far from what I want to write about, specifically the simple fact I am a happy person. I love my life. It is rich and full. I get great joy from teaching, writing, sports, skiing and kayaking, and enjoy the company of my family and friends. Beyond my own happy existence, I can readily report that most people I know with a disability are also happy. Sure we people with a disability rail against social injustice but separate this from our overall happiness.

Being happy and having a disability are thought to be mutually exclusive. The psychological and medical literature is clear--we people with a disability are not supposed to be happy yet we are. Of course such sentiments are buried under academic jargon. But I assure you the general idea that disability excludes happiness dominates social discourse. It is revealed in headlines in newspapers, stories of overcoming disability, and other archetypes associated with disability. The general belief is that the worse a disability the more likely it is for that person to be unhappy. I think this notion is grossly wrong. Happiness and disability have nothing to do with one another. If you were miserable before being disabled I bet the odds are good the same person will be miserable after they are disabled. This reminds me that I was once told by a friend that I was a wise ass before I was crippled and that I remain a wise ass. Disability did not change me. The point is happiness and relating it to disability is misleading. Misleading in the extreme. Happiness or lack of it is not the problem people with disability encounter. No, our problem is social isolation and a refusal on the part of society to negotiate or accommodate our difference. In my case, the country remains largely inaccessible to wheelchairs. There is no real social commitment to making the country accessible. Sure we have the ADA that attempts to force businesses and school to be accessible but no one aside from people with a disability really care about access. Like it or not access remains poorly understood and under appreciated. I often see access as the first line item cur from limited budgets. People simply do not care nor do they want to spend any money on said access.

Social isolation and happiness are two very different things. Social isolation can lead and often does to depression. But no one asks why are people with a disability socially isolated to begin with. These thoughts were prompted by an article in the British Journal of Medicine. The article concerned the "well being" and "happiness" of people who are locked in or experience locked in syndrome. If you want to understand what it is like to be locked in read Jean-Dominique Bauby's poetic Diving Bell and the Butterfly. Few books move me to tears but his book did. I cannot imagine what it would be like to be locked in--unable to move at all with one's mind intact. Of course some people also look at me and think the same thing--I cannot imagine being paralyzed. As I often joke with others I cannot recommend the experience. But paralysis, even locked in syndrome, has nothing to do with happiness. And the researchers who wrote in the British Journal of Medicine seem shocked. People with locked in syndrome are happy. The majority of people with locked in syndrome are happy. Imagine that--happy disabled people. Happy severely disabled. Its a miracle! No, its not. The shocker to me is that people, your average person as well as people in the health care profession, do not get it--yes we people with a disability are happy. Oh the nerve! I guess we people with a disability are supposed to be miserable. You know pine to be "normal" again. Well my idea of normal includes paralysis as an integral part of life. Do I want to be paralyzed? No. But who among us considers our bodies ideal. Men often wish they were stronger, more fit or had more hair. Women want to be taller, slender and have a larger bust. Only a tiny percentage of us meet the cultural ideals of body types. We simply make do with our strengths and weakness. In this we people with a disability are identical to our peers who are bipedal. We do the best with what we have to work with. I have severe spasms. I use those spasms to my advantage. When I transfer I use the spasms to pull my wheelchair toward me. I thus do not really need brakes on my wheelchair. I could offer many other examples but I do not want to be labor the point. We people with a disability are no different than anyone else. We can be happy, sad, in love, alone, and experience anything your average bipedal person does. The problems we have, the physical ones are obvious and many like me let their freak fly. If there is one good thing about having a disability it is that I do not worry about what others think of me. The odds, I know, are very good, strangers do not think much of my existence. This is liberating in many ways--I am free to be who I am. Indeed, it is a position of power in some ways. People like Ed Roberts knew this and called it cripple power. Hence we all have the power to be happy--disabled and non disabled alike.

AAPD Oblivious to Disability?

2011-02-23T08:58:00.001-08:00

I just got an email that truly pissed me off. The American Association of People with Disabilities (AAPD) invited me to the 2011 Gala in Washington DC. Last year I thought about going. This year no such thoughts entered my mind. In fact the mere email notice made me mad. Why am I mad? How about this--the AAPD Image Award goes to to the cast and creative team behind the television show Glee. Glee? Glee? No it cannot be Glee--you know the show where Arnie dreams of walking and portrays an image of disability that is one gross stereotype after another. And yes the same Arnie portrayed by an actor without a disability. A modern day equivalent of white people putting on black face circa 1930. Were the people at the AAPD smoking dope when they made this decision? Maybe they dropped some acid. How can the AAPD be oblivious to the fact Glee has enraged people with disabilities. Has the AAPD read anything about the outrage directed toward the show Glee? I am far from alone in expressing my outrage at the way people with disabilities are portrayed on Glee.

If the Glee reference were not enough I was more outraged by the list of speakers. A few token crips are on the agenda--no surprise there. The AAPD tagged Stevie Wonder and Bob Dole among others. But also speaking is Gerald Arpey, the President and CEO of American Airlines. Yes , the CEO of a major American airliner is asked to speak. This person works in an industry that has a long history of discrimination against people with disabilities. Why just last year the DOJ reported complaints against the big American carriers, airlines like American, rose sharply. Come on, how oblivious can the AAPD be? I do not expect much from such galas. They are all about show not substance But the AAPD must make some effort to ground such a gala in reality. Of course prominently displayed in the email was the offer of sponsorships. Opportunities are available from $1,000 to $250,000. Yikes that is a lot of money. Instead of patting themselves on the back fro a job well done perhaps the AAPD could look into the following states:

California: Budget cuts threaten developmentally disabled children. See also ADAPT protests at what they dubbed Arnieville.

South Carolina: An all out effort is being made to reduce disability services.

Illinois: Budget cuts across the board that affect elderly and disabled people. Some worry entire programs will be eliminated.

I could go on state by state. Who gets hurt? People with no voice, no connected lobbyists, those that can least afford to suffer, those most in need. I have yet to read one thing the AAPD has done to stop the budget cuts that hurt people with disabilities. What I wonder were organizers thinking? It is obvious the AAPD is divorced from the reality most people with disabilities experience. Anyone with an ounce of common sense would not invite the cast of Glee or CEO of any American airline. But hey what do I know. I have only been thinking and writing about disability rights since Bob Murphy put the idea in my brain shortly after I was paralyzed. His book, The Body Silent, changed my life. To me, this is only another example that those in Washington DC politics are a class apart from the average citizen. But for now I am just mad. Furious in fact. The AAPD can go kiss my skinny Irish ass.

Nearing the End

2011-02-23T08:30:00.000-08:00

I was at wound care yesterday. The wound continues to make progress. I have great granulation and the wound is fully filled in. After much discussion the wound vacuum is off or as they dryly put we discontinued therapy. A happy day indeed! I referred to the wound vacuum as my ball and chain. It was necessary and speeded healing but the company that has a monopoly on the wound vacuum market, KCI, was a nightmare to deal with. KCI is the perfect representation of evil, the perfect example of all that is wrong with corporate America. Regardless I am wound vacuum free. This does not mean the wound is healed. The skin needs to grow back and close the last part of the wound, around the size of a fifty cent piece. I hope to be free of wound care in a month. For now I am changing the dressing daily and will have wound care come once week to measure the wound and confirm it is getting smaller. As my brother told me on the way home from seeing the doctor, "don't fuck it up now". Words of wisdom and colorful too! I was warned by him and the surgeon--do not sit up too much. There is more healing to be done. To insure I am careful I remind myself that if I wound that wound today I would be very upset. I want to be healed and never ever worry about such problems again.

I have learned a hard lesson--the hardest. Skin care prevention is of paramount importance. Never in my wildest dreams did I ever think it would take six months to heal a wound. Never did I envision myself stuck in bed and isolated. Never did I dream I would miss the ski season. Denial is a powerful emotion. In fact in part it got me through this extended nightmare. One thing has dominated my thoughts as I near the end of my long journey in wound care. Helping others avoid this problem or helping those cope with an existing skin problem. I will give the surgeon a copy of my posts and hope there is something I can do. No one should be forced to endure what I have. It is a form of cruel and unusual punishment to be stuck in one's home for months on end. Worse yet some, many actually, are forced into nursing homes for the exact same problem--a far worse fate than I experienced. Something needs to be done to help those in similar circumstances. Also education in the form of prevention must be given higher priority. High end cushions need to be given to all paralyzed people and those at risk. This would not only be good for people but save valuable health care dollars. We just need the vision to make this happen.

A Fate I Escaped

2011-02-20T10:27:00.000-08:00

These last six months have been very hard. First, I was in the hospital and endured two bloody debridements. Second, I was on enforced bed rest and dependent upon my family to care for me for months. These two major events say nothing of the tremendous expense wound care has involved. The biggest expense was the purchase of a clinitron bed and the extended rental of a KCI wound vacuum. Even with all this I consider myself very lucky. I had a family that sacrificed and cared for me in my own home. For this, I am eternally grateful. But what I am most relieved about is that I am home and have been since I was released from the hospital. Accordingly, I am lucky times two because I escaped a nursing home. Most paralyzed people are not so lucky. Nursing homes are a necessary evil. Most such institutions are a place people go to die. Death in my estimation takes place long before the heart stops beating. Death in institutions is caused by inertia or lackthereof. The routine, the needs of the institution are paramount. No action takes place, indeed inaction is desired. Routine is serene and secure. People that rock the boat, ignore the routine are trouble. The routine is mind numbing if not deadly. What is worse, far more troubling, is that the age of people entering nursing homes is dropping. Paralyzed people often end up in nursing homes. Look at the history of the disability rights movement--some of the biggest advances originated in the halls of nursing home pushed by young people. Young people locked away and unable to have a social life. This is how the battle for mass transportation, specifically buses in Denver, started and spread across the country int he late 1970s.

The above thoughts came to mind when I read an article in the Houston Chronicle about the number of people with disabilities now living in nursing homes. According to the article, people age 31-64 have entered nursing homes at a higher rate than those 65 or older. People under 65 now constitute 14% of the nursing home population. I find this figure stunning, shocking in fact. Why do people under 65 end up in a nursing home? Simple: money. Most people cannot afford home care services. Young people end up in nursing homes because of traumatic injuries while others are institutionalized because they have chronic conditions. Enduring life in a nursing home at a young age is for me unimaginable. I have surely struggled since I have been stuck in bed and isolated. However my struggles pale in comparison to a person my age that finds himself or herself in a nursing home. I find it hard to fathom why we do not rely more on home based care. It is a far more humane way to live. One can maintain a level of dignity the best institution in the world cannot provide. I think it is not in dispute that community based long term care is the ideal. However this ideal is not well funded, long waiting lists are common in most states and the nursing home industry yields great clout within political circles. We as a people should be outraged. We should demand appropriate home based care that is not only available but affordable. No such demand exists. Sure groups like ADAPT forcefully push for community based care but how many Americans even know ADAPT exists. Sadly, not many. Part of the problem is that people do not want to consider much less seriously think of life with a disability. Like it not though most of us who live long enough will have to cope with some sort of disabling condition. What is also not considered is the social isolation that is often associated with disability. Why are people with a disability isolated? American society both socially and practically is not designed to be inclusive. Stigma is still attached to disability in spite pf the fact the ADA was passed 20 years ago.

I will be the first person to admit the social plight of people with a disability is markedly better than it was 30 years ago when I was paralyzed. This is a far cry from saying I am considered equal to my fellow Americans that wake up in the morning and stand up. Wheelchair use and disability in general remains a quasi tragedy in the estimation of most people. See my last post about Mr. Lakeman int he NY Daily News to see how this message is delivered in a routine everyday fashion. It is not hard for me to conclude we can reduce the number of people, young and old alike, in nursing homes if we valued the elderly and people with disabilities. The fact is we do not value disabled lives or the lives of the elderly. If we did, adequate social supports would exist. Supports that would have made my fear of a nursing home a thing of the past.

Tabloid Propaganda and Paralysis

2011-02-17T07:52:00.000-08:00

Like many men, I read tabloid sports sections. In New York that means I read the NY Post and NY Daily News. The writing quality is not impressive. I am certainly not breaking any new ground here with this observation. Sports reporting relies heavily on well worn themes--praising the under dog, over coming injury, winning in spite of long odds etc. Redemption and overcoming are constants and often the subject of special interest pieces. A few weeks ago I read one such story. The story, "A Life Back on Track" February 6 NY Daily News, annoyed me to no end. The article by Wayne Coffey was about Andrew Lakeman. Lakeman was a New York based jockey. I use the past tense because in 2007 he suffered a bad spill at the track--that is his horse fell and " his body was crushed as if it were a potato chip". Lakeman suffered a complete spinal cord injury. The tone of this article is so over the top it is hard to believe. For example, Coffey wrote: "It's almost impossible to imagine anyone overcoming more than Andrew Lakeman, who knows little of what the future will bring beyond this: he will spend every day of it in a motorized wheelchair, paralyzed from the chest down". Please enter here soaring melodramatic music. I do not mean to diminish or belittle Mr. Lakeman. Any paralyzing injury requires a tremendous adjustment and time to accept. I do not nor I am sure does Mr.. Lakeman recommend the experience. But what the article does not delve into at all is why--why is paralysis so difficult. Why is it "impossible to imagine" how a person "overcomes" such an injury. I would maintain the hardest part about a paralyzing injury is not paralysis but rather the way society responds to paralyzed people. The article in the NY Daily News highlights the inherent social problems Mr. Lakeman will encounter. I find this ironic in that the article also chronicles with Mr. Lakeman's struggle with alcohol and drug abuse as well as bulimia. All these issues are handled well and respectfully. If one reads the article carefully it is obvious paralysis is terrible, a fate worse than death.

There is no way Mr. Lakeman can be average, normal if you will. There is no way he could respond with nuance to his disability and spinal cord injury. His friend, Kristina Dupps, a former trainer makes this clear. She is quoted as saying: "He's either going to shoot himself or make something good of his life". The fact is reality for people with spinal cord is somewhere between. It is not a world of extremes. What is extreme is the social reaction to Mr. Lakeman's injury. He apparently has the choice of giving up, committing suicide, something he considered, or overcoming his disability. Mr. Lakeman is no longer human for he has entered the dreaded territory i refer to as the "Super Crip" image. I have railed against this concept again and again. The "super crip" notion is a gross generalization that defies reality. It is also inherently dehumanizing. A paralyzed person can not lead a normal life and is reduced to the "super crip" who puts all those other weak willed lazy crippled people to shame. Mr. Lakeman is a hero! He refuses to give up. He wants to work at the track and train horses. Wow, is this not amazing! He is a saint because he is "happy to be doing what I'm doing now. I really would't change a thing. This is what I love". My question is simple: what other choice does Mr. Lakeman have. He is a good horseman and has spent his entire life around the track. It seems to me becoming a trainer or selecting any of a number of other jobs at the track is pretty reasonable response.

What bothers me about articles such as the one described above are the assumptions made and not so subtle subtext. Life after paralysis unbearably hard and an ordinary life is not possible. Those that attain such lofty goals such as a job and a complete life are hailed as super humans. Mr. Lakeman I am sure would agree is as flawed as he was before he was paralyzed. He is no different than any other trainer that can walk. Here is fascinating fodder for an article. How many paralyzed trainers are there in New York and elsewhere? What obstacles did they encounter at the track. Was it hard for them to find trainers willing to trust them with horses that routinely cost hundreds of thousands of dollars. I can think of one other name horse trainer based in California who trained Derby horse Brother Derek. Is there an association of paralyzed trainers? Mr. Lakeman trains one horse. How is his quest for owners and other horses going. Such questions are not addressed. Instead we get unfortunate lines such as: "Andrew Lakeman doesn't ride horses any more. He trains them. He moves his chair onto the platform and is hoisted up, and rolls forward and turns on the ignition [to his car]. For Andrew Lakeman, everything is new, his life free of alcohol and bulimia and free of limitations, too, no matter what the wheelchair suggests".

What exactly does a wheelchair suggest? To me it signals Mr. Lakeman simply moved on after a severe injury. It means he has a job and, like others trainers works long, hard, if not brutal hours with high strung animals that are worth a small fortune. The pressure Mr. Lakeman deals with is intense. But this is not the message the general reader will come away with. Mr. Lakeman is reduced to a stereotype--the "super crip". Thus the real hard questions are not addressed. Why are people with disabilities routinely unemployed? Why are housing options severely limited? Why is independence a struggle? Why is mass transportation still difficult to access twenty years after the ADA was passed? These are issues passed over and deflected. Coffey wrote that Mr. Lakeman "knew he wanted to be independent--he rejected the idea of returning to England because he did not want his parents to care for him:". This begs the question why Mr. Lakeman could not be independent in the United States. What support services were available? If there were none why was this the case. And more to the point why does it seem as though accepting such dependence was a reasonable response to paralysis. Like every other american I know, we fiercely value our independence.

Do not take my words as a critique of Mr. Lakeman. He works in a tough industry. The race track is littered with people who have substance abuse problems, marriages fail often under the stress, and a nomadic or seasonal lifestyle is the norm. While majestic, thoroughbred horses require intense effort to maintain at peak performance. The hours people work at the track are long and hard. Success at the track is based on one thing--wins. Those wins are hard to come by. If I were Mr. Lakeman I would be delighted by the article in question. It raised his profile and he may attract the interest of a horse owner. But I am not Mr. Lakeman. I am not a novice to paralysis and have spent 30 years thinking about the social ramifications of paralysis. I utterly reject dominant sociocultural norms associated with disability. I hope with time a more nuanced understanding of disability will emerge. For that to happen the content of articles such as the one discussed need to shift fundamentally. The questions asked need to be about the social implications of disability and not rely on outdated stereotypes. Such articles may sell papers but are ultimately destructive to the people with disabilities that merely want to lead an ordinary life.