Responses to Paralysis

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

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

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

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

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

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

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.