Bad Cripple

Misplaced Outrage

2013-05-16T16:28:00.003-07:00

I mocked the controversy created by the New York Post story about Disney Land. In case you missed it Wednesday Martin has alleged that wealthy Manhattan parents have hired people with a disability with the express purpose of eliminating waiting on line. The fact this story has prompted an extended amount of coverage bothers me. First, we are talking about the NY Post, a tabloid owned by Ruppert Murdock. Not exactly a paragon of journalism. But let's put this aside. Who is outraged? In my estimation people that know nothing about disability. The headlines are about what I expected:

Disney World Scam: Wealthy Moms Rent Disabled Guides to Skip Lines (and Shame Humankind)

How I scammed the Disney World Wheelchair Line System

Disney Probes Sleazy Riders

Disney World Scheme: Entitled Families Hire Disabled Guide to Bypass Lines, Says Report

Yeah No: Rich Manhattan Moms Allegedly Renting Disabled People to Skip Lines at Disney World

I thought this story would have a short shelf life. Now I am not so sure. CNN picked up the story and as expected all Florida based news outlets are discussing it. The fact is this is not news at all. People have been using this scam at Disneyand elsewhere for a long time. Thus this is a new twist on an old story with the perfect villain: uber wealthy Manhattanites. Damn those 1% parents and their children too!

When I read stories about disability scams I shrug. The outrage expressed puzzles me. I have had my civil rights violated in a myriad of ways. For instance, I have been refused entry to restaurants in New York City; no wheelchairs I am told. I have had many a taxi pass me by to pick up a bipedal customer. I have had bus drivers lie to me and say the lift is not working or that they do not know how to use it. I have had rental companies assure me a car with hand controls is available only to find out the car is "lost" in transit. When such incidents take place non disabled people look away. I cannot recall anyone ever coming to my defense when I suffered gross inequities at let's say an airport. I cannot recall a single person that expressed outrage when I was being denigrated by someone who clearly held power. Hence, I shrug about Disney and the angst expressed. It is misplaced emotion. I wonder where are these people when the school board decides not to put a lift on a bus? Where are these people when the special education budget is cut? Where are these people when Mayor Bloomberg selected an inaccessible taxi of tomorrow? Where are these people when technology for people with a vision impairment is deemed too costly? Where are these people when a new facility is constructed but does not meet ADA requirements? Where are these people? Nowhere to be found and silent. This is bad, a terrible social dynamic. What people say and what people actually do is radically different. This is a giant social problem. Who is too blame? Me and everyone reading these words. This social failure reminds me of the classic film Cool Hand Luke. The brutal guard looks at Luke behind aviator sun glasses, hat pulled down low and states: "What we have here is a failure to communicate".

In addition to a stunning level of ignorance about disability in general, I have an additional concern. As noted in my previous post about the Disney is the emergence of able bodied outrage. Here I refer to a multitude of stories that question what I would classify as a reasonable accommodation for people with a disability. The most well known story about what a treat it is to have a disability pertains to airport security lines. More often than not, people with a disability do not wait on line. We are shuttled off to a different and shorter line. This is a reasonable accommodation and mitigates a multitude of different disabilities. People see this and think oh man you are so lucky. Well I do not feel lucky when I am the very first person on the plane and the very last person off the plane. I do not feel lucky when my wheelchair comes back from the belly of the plane and is damaged. I do not feel lucky when a supposedly trained person asks me to "walk just a little bit". This too is a reasonable accommodation one I find decidedly unreasonable

At issue for me is how do we raise the level of understanding. How do we get all people to think disability rights and civil rights are one in the same? Disability studies has been ineffectual. The disability rights movement has stagnated in recent years. ADAPT demonstrations are utterly ignored by the press. So how do we educate and make the bipedal masses see disability for what it really is? I have no clue. And that is problem number one.

Summer Work: Disney Here I Come

2013-05-14T11:18:00.001-07:00

I love to read the New York Post. It is the epitome of tabloid journalism. The NY Post has no redeeming value aside from funny headlines and good coverage of my favorite hockey team, the NY Rangers. I am very careful not to read the news or what passes for the news. Today I was amused to read an "exclusive" article, "Rich Manhattan Moms Hire Handicapped Tour Guides so Kids Can Cut Lines at Disney World, by Tara Palmeri. The article is so dreadful and meaningless I refuse to provide a link. Just use your imagination--that is good enough for NY Post journalists. The article prompted my good friend friend Stephen Kuusisto to write a post on his wonderfully imaginative blog Planet of the Blind. Gawker, Jezebel and the Gothamist "reported" about the NY Post story. Better yet, Wednesday Martin, a social anthropologist discovered the scheme. Martin has a new book out, Primates of Park Avenue, and works as a writer. She has a PhD in comparative literature from Yale University. How this makes her an anthropologist I am not so sure. But we are dealing with the NY Post, facts are optional. What I loved about this story is the effort to make it sound as though a lurid under ground economy exists. I am here to tell you yes we crippled men and women cheat. We steal. We manipulate. We are, in short, human beings. Oh, the horror!

The NY Post story had me on the floor laughing when I read about "black-market Disney guides" and the existence of a "rogue guide service". But wait there is more--yes, this service is available to only to "Manhattan's private School set". The inside information is passed around in a "ritualistic manner". You cannot make this shit up. Investigative journalism in the world of Ruppert Murdock. We are doomed! Now I could get ornery like my friend Steve Kuusisto did, (http://www.planet-of-the-blind.com/), and with good reason. Like Steve, I too am upset what he calls "able bodied outrage" over the myriad of perks we people with a disability supposedly enjoy. But not me, no sir, I am not mad, angry, or upset. I see an opportunity. The real question for me is do I want to react as a heartless capitalistic pig or as an outraged person with a disability. A third options exists too--have the Society for Disability Studies investigate the matter. The SDS meetings are going to be held--you guessed it--in Disney Land. Sorry, but I cannot help but keep on laughing. Let me explore the possibilities.

First, heartless capitalistic pig option. Dream Tours, identified as the "black marketers" charge $130 an hour and charge $1,040 for an eight hour day. I will undercut Dream Tours. I will put on my pathetic cripple costume and look particularly needy. But wait there is more! I will charge a flat fee of $1,000 and include free sun screen. But wait there is, you guessed it, even more. I will provide PBJ sandwiches and juice boxes. For medical emergencies we can use Disney's readily available epipen for bee stings. Bees love those juice boxes kiddies. Nothing but the best for tawny well heeled parents from Manhattan. Sorry, Nobu is a bit out of my realm of experience. Just think how hungry you will be after eating nothing but a soggy PBJ like your maid made when you were little.

Second, outraged cripple approach. This is not a money maker. Think of this as an Americanized Survivor episode minus the exotic location. I get to travel with the Manhattan family to Florida. We can wait and hope an Access A Ride bus shows up to take us all to JFK. Sorry no limos for the crippled. I fear NPR would broadcast yet another story about how disability is in reality a total scam. Upon arrival we hope the elevator works. A big if but today we are lucky. We get to wait in line to hand off our luggage to friendly airport workers. Of course, none will speak with me because I have the cripple plague. After waiting in line for over an hour we make our way to the gate. The agent is of course is thrilled to see a crippled family member. We can observe the delighted gate agent spend 10 minutes entering obscure codes into the computer and inform us we will "pre-board". Needless to say this will not go well. The trained professionals that arrive late are disinterested, have no clue what they are doing, and do not speak a word of English. Overlooking these mere inconveniences, we board and then get to watch every single person exit the plane upon arrival and wait and wait and wait and wait... Um, and wait for similarly well trained employees to get off the plane. Of course this assumes my wheelchair was not damaged because the crew insisted it be stored in the belly of the plane. Somehow my privileged crippled status and multiple perks r.e. airport travel will not go over well.

Three, an investigation performed by the SDS. Oh God save me. First, we will need to organize a committee. The committee will create a panel discussion. 19,000 emails will exchanged by interested parties and posted on every listsev known to humankind. One year later the committee will reconvene to discuss the panels findings. The results are not conclusive. Another panel will be formed, papers presented and 29,000 emails exchanged. A new president of the SDS will take over and declare the approach used to date was ableist from a Foucaultian perspective. Yet another panel will be formed. More papers delivered, 39,000 emails will be exchanged. A report will be issued five years later. It is a wonderful report. By God, it is a publishable quality report that puts a dagger in the heart of social and economic inequality. Temple University Press is thrilled. The acquisition editor is thrilled. The report is edited by all parties involved and sent out for scholarly review. Two years later the reviews come back. This is important work. Editing is needed but we are good to go. The revisions take two years, warp speed in academia, and nearly a decade later the SDS weighs in. Disney should consider the symbolic significance of creating a line for people who have atypical bodies. This questionable policy could cause people unfamiliar with disability culture to resent the presence of the other. The SDS implores Disney to reconsider their approach to difference. Perhaps a committee could be formed.

Satire, you gotta love it. Apologies to all.

Assisted Suicide in Vermont: I am Worried

2013-05-10T09:21:00.001-07:00

It appears assisted suicide legislation will soon pass into law in the state of Vermont. The Vermont State Senate voted 17-13 to pass the Patient Choice at the End of Life Act. The bill will be sent to back to the House and Governor Peter Shumlin is expected to sign the bill into law. This news has created a buzz because Vermont will become the third state in the nation to pass such legislation. Proponents of assisted suicide legislation surely consider this a great victory (Thaddeus Pope at Medical Futility was down right gleeful, see http://medicalfutility.blogspot.com/2013/05/vermont-to-legalize-aid-in-dying.html). Opponents of assisted suicide such as the Death with Dignity Center, Vermont Right to Life Committee, Second Thoughts and Not Dead Yet are disappointed.

I am not surprised this bill was passed into law. Vermont, a small rural state with a small population, is a cultural entity unto itself. I deeply admire Vermonters. I have spent a lot of time in Vermont since I started skiing. But I am not a Vermonter and this is an important fact. For some Vermonters being from a different state disqualifies me from stating an opinion pro or con about Vermont legislation. I get his. I am a New Yorker, an outsider. My business via ski tourism is welcome but I should butt out of Vermonters business. I get this. I do not come across many Vermonters stating an opinion about New York legislation. Vermont embraces an especially tough rugged type of individualism. I get this. Americans of every stripe embrace and value individual freedom. We applaud independence and a strong work ethic. And wow do the people of Vermont work hard. The Vermonters I have met and skied with are good people. The very best in fact. Vermont really has communities that work together in ways I admire. If you doubt me read about the response to the recent hurricanes. In the face of a natural disaster Vermonters went out of their way to help others and rebuild roads and bridges at warp speed.

If Vermonters are so great why did they pass assisted suicide legislation that I consider potentially dangerous? I would speculate Vermonters have embraced a type of individualism that does not permit them to think about vulnerable populations and the risks they can encounter. I get this. Vermonters are individuals and members of a strong and vibrant community. We will take care of our own. We will care for the sick, elderly and disabled. I contend not every person is part of a community in Vermont. There are socially isolated people who have no social connections. This is an afront to Vermonters.

Again, I admire the individualism and work ethic of Vermonters. So let me appeal and provide a Vermont based example of the risks I worry about when it comes to assisted suicide legislation. Amanda Baggs has Autism. She lives in Burlington Vermont. As many have already detailed, Baggs was recently seriously ill and in need of having a JG Tube inserted. This is an ordinary surgical procedure and in Baggs case would undoubtedly be life saving. Yet this is not what some Vermont doctors thought was was the best course of action. They pressured Baggs to consider the “alternative”. The “alternative” here was death. Thankfully Baggs experience generated a strong response on the part of the Autistic community in particular and the disability rights community in general. I could state much more about the response to Baggs experience but I want to remain Vermont specific. Rachel Cohen-Rottenberg, until recently a resident of Vermont, and person with Autism wrote:

There has been a great deal made lately of the so-called right to die — the right of terminally ill patients to obtain a lethal dose of medication in order to end their lives. Advocates for “death with dignity” believe that they can put enough safeguards in place to ensure that people are able to make a free and autonomous decision, protected from outside pressure at the hands of parties who do not have their best interests at heart. Under our current system, the very notion of this kind of autonomy is a dangerous myth. There can be no free and autonomous decision to die with dignity when people who want to live with dignity are not encouraged to live — when the very idea that they can live with dignity is not even on the radar of the doctor who walks into the room. Let’s face it: disabled people represent the failure of the medical profession to live up to the mythology our culture has built around it — that cures are right around the corner, that medical science is all powerful, that life can be made perfect and pain free, and that even death can be put off indefinitely. People with disabilities are an affront to a culture that idolizes the medical profession and assigns it all kinds of power it does not have. The myths by which we live fail abruptly in the presence of a person with disabilities, and doctors are no more immune from the power of those myths than anyone else.

For more by Rachel Cohen Rottenberg see: http://www.disabilityandrepresentation.com/author/admin/

Cohen-Rottenberg's last line is chilling—“doctors are no more immune from the power of those myths than anyone else”. Until 2010 I refused to believe a physician could be so biased (yes, I was that naive). I revere education and knowledge and refused to believe such a physician could be grossly biased against a population of people. This is what education is all about—instilling the ability to reason, to see shades of gray in a black and white world, to notice subtle nuances, and be free of bias. One experience in a hospital late at night shattered that illusion for me. It was a soul crushing experience I tried to bury with all my heart and all my soul. See:http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=5905 My experience, Amanda Baggs and an unknown number of others is exactly why I am worried--it is why all people should be worried. Like it or not, vulnerable populations exist in every state. In every state where assisted suicide is legal vulnerable populations are at an increased risk. Proponents of assisted suicide legislation scoff my concerns. They quickly point out no abuse I worry about has ever taken place in Oregon and Washington. What these people fail to mention is that state required reporting accounts for not much more than the barest demographics of the person that ended their life. Under state required reporting my experience and Baggs experience would not come to light. In fact Baggs and I are lucky. We had family and friends. Yes, I am indeed worried. What happens to those who are isolated and alone? What happens to an elderly person that has outlived his family and friends? What happens to a terminally ill person who is all alone? What happens to those with severe disabilities--especially those with profound cognitive disabilities? What happens to a person with a severe mental illness? Who will support and protect these people? I hope Vermonters will heed my words and think about these questions.

A Unique if Not Gross Dog Story

2013-05-08T08:58:00.001-07:00

If you do not like dogs, labrador retrievers in particular, stop reading. I am not joking. Last night I got a delivery of groceries (this my guilty pleasure). I emptied all the bags on my counter and started thinking of meals to prepare. I love to cook and have become adept at making small meal portions that I freeze. I am happy as I cook and listen to the radio with interest as to how the Mets will do. Matt Harvey was going to be pitching later and he is a budding star. I was making multiple meals. I made four fancy hamburgers. I doctored up pasta sauce with lots of onions and home made meatballs. I cooked up some beets and put fresh chives on them. I made a chicken and bean sprout dish. I am set for at least a week in terms of meals. Life is very good.

My black lab Kate loves it when I cook. I am a sloppy cook and nothing that falls on the floor is left to chance. Kate watches me like a hawk. The minute I move away from the stove top she rushes over to eat and lick the floor clean. Last night was no exception. Kate is thrilled when carrots, a bit of meat, an onion, celery or any food item hits the floor. She is like a vacuum. I am cutting and chopping away when I notice Kate is even more interested in me than usual. She is laying down on all fours and starts to inch closer to me. Surely I am not going to notice. But this is out of the norm. I chalk her creeping towards me to the smells of garlic, onion and cooking meat. I ignore her until I realize she is directly under my wheelchair and licking the floor with gusto. Her unadulterated joy is palatable. However, inching under my wheelchair in the kitchen is not allowed. She only goes under my wheelchair when she is afraid or feels danger is nearby. Something is clearly going on. I did not drop a big piece of meat on the floor or make any other sort of spill that would cause such happiness on her part. I order her to move and I discover the source of her pleasure. I scratched my toe agains the brick wall in my kitchen and am bleeding. I am bleeding a lot. Kate likes my blood. Scratch that. Kate loves to lick my blood. It gives her unparalleled joy that is rivaled only by her second favorite thing to lick--cream, specifically aquaphor. What is a single cripple guy supposed to do? I need put a band aide on my toe and douse it with hydrogen peroxide. My skin and wound care kit is in my bathroom. I am still bleeding and will leave a blood trail I do not want to clean up. Then it dawns on me I need not worry. Kate will follow me all the way to the bathroom and clean the floor with joy and vigor.

My toe is fine and Kate appears no worse for the wear. I was a bit worried about her though. Licking up blood cannot be good for her but I put my mind at ease--she was her usual energetic self in the morning. Her tail was wagging away and she had love in her eyes. Her entire body was pulsing with energy and was dying for me to get up and play. What a great relationship I have with her. The bond we share is humbling. I am as devoted to her as she is to me. But I have a confession. Kate is a unique dog. Like me, she does not understand bipedal people. In fact she is terrified of steps, a fear that I find fascinating but understandable. Steps are not relevant to her life or mine. She also has no clue how to physically move around people that are bipedal. If a person is walking toward her she does not move. Not an inch. She expects a bipedal person to alter their direction. In contrast, Kate understands wheelchair movement. She knows exactly what to do once I move or any other person using a wheelchair moves. Although Kate is highly social, she prefers to interact with people that use a wheelchair. Line up a dozen people, one of whom uses a wheelchair, and she will go to that individual every time. She will put her chin on this person's thigh. This has led me to wonder about the bond I share with her. Am I closer to her than your typical, meaning bipedal, dog owner? Does she know I am different? If so, is she protective of me? Does she sense the social stigma associated with wheelchair use? Sadly, I will never know the answer to these questions. I will end with this thought as it is time to go outside with Kate and have some fun.

Critics of this Bad Cripple Take Note

2013-05-07T13:20:00.001-07:00

Being a self-professed bad cripple does not endear me to everyone that runs across my blog. In fact I routinely get angry email and comments that borders on hate. I read these emails because they bother me. It has never been my intent to hurt others and I am often taken aback at how my words are misunderstood or why they prompt deep seeded anger. Regardless, my words have enraged some people and a friend once told me I piss people off in a nontraditional manner (a comment I am not sure how to take). Sometimes it is a specific post that incites angry replies; my analysis of the video Purple Feather posted in April 2011 still generates fury. Recently one reader commented:

Are you aware of what people with a disability have to live on. It's not much… Until you know anything about anyone who has to ask for help, I suggest you volunteer with the physically challenged. Learn about their life. See how they struggle to make ends meet… You have to be out of your fucking mind. I wish for you that you are incapacitated for the rest of your life (hit by a car, burned in a fire, shot in the spine… and then I'd love to see you begging on the street. I'd give you money and a very long speech on KARMA. Good luck to you. I hope you get that heart transplant that you desperately need. You're not a fucking idiot. You are cruel… When you actually learn what it's like to live with a disability then you should comment on these types of videos. Until that time. you should keep your thoughts to yourself.

Most angry email I get is associated with hot button issues. For instance, everything I have written about growth attenuation or the so called Ashley Treatment prompts a visceral response. I have gotten hundreds emails from people who rail against my opposition to growth attenuation. Suffice it to say, the email I get in this regard makes the comment above appear polite. Critical email often accuses me of not knowing anything about the subject I am discussing. In terms of growth attenuation this is partly correct. I have not raised a child with a cognitive and physical deficit and yet feel comfortable being a staunch opponent of growth attenuation. I try hard to reply to severely critical email in a neutral way. I defend my views and refuse to be baited into replying in anger.

One group of people who have consistently taken me to task are those with a spinal cord injury that have devoted much if not all their time to a cure for paralysis. I do not understand the fury that has been directed at me by those involved in what I call the cure industry or the Christopher Reeve School of Paralysis. When Reeve was injured in 1995 I grossly underestimated the impact he would have on the cultural perception of spinal cord injury. I have been severely critical of Reeve and once published a diatribe entitled “Wishing for Kryptonite” in the Ragged Edge. I will readily admit I have not been diplomatic in my criticism of Reeve and the cure industry. While I am no longer disturbed, the fact remains Reeve fundamentally altered the way spinal cord injury was perceived. Last year I wrote: Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. High tech medicine is embraced even if it is shockingly expensive and impractical. Think the exoskeleton. Reeve also helped establish the idea that if we cannot be cured today then our paralyzed bodies must be maintained in good working order. This is a full time job unto itself. It can require a staff of people as Reeve had. But it requires total dedication. A family, job, and social life is of secondary importance.

A singular focus on cure post spinal cord injury is hard for me to comprehend. Simply put, I have never perceived using a wheelchair as inherently inferior to bipedal locomotion. I do not compare my paralyzed body to a typical body. I do not bifurcate my life into pre and post injury. My utter lack of interest in a cure for paralysis was once commonplace. In the Christopher Reeve era, a belief in cure is increasingly common and is indicative of a significant cultural shift. When I was paralyzed my peers and I spoke of our future and railed against the stigma associated with our spoiled identity. Today, newly paralyzed people have no connection with old timers such as myself. Few know anything about the disability rights movement and I get a sense some expect to leave rehabilitation with a new adapted van and ADA accessible home. The lack of concern—what will I do now—worries me. Far too many people with a recent spinal cord injury make a Faustian bargain: they will focus on cure and if it does not come at some point in the future they will reevaluate their life. Too often this re-evaluation will be harsh and deadly. Christina Symanski is a perfect example; her overwhelming negative assessment of life post spinal cord injury and decision to end her life by not eating and drinking is no longer unusual. I don’t get it. She wrote:

Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasoning as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me. If you don't belong in my boat, please save your judgment, and just take a moment to think what you might do in my situation, and how you might want to be treated... Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be.

I too know life pre and post spinal cord injury. My life pre and post spinal cord injury have been wonderful. I have led a privileged life. Like any other person I have had my fair share of trials and tribulations. I was married and divorced, an experience I do not recommend. I had a severe skin wound in 2010 and spent almost a year in bed recovering (and many more months recovering from being in bed so long). On the positive side of the ledger I earned a PhD from Columbia University, have published widely, taught at the university level, and have had the great joy of being a father. All in all life has been and continues to be sweet.

A cure to spinal cord injury was not relevant in 1978 when I was paralyzed nor is it important to me in 2013. For some, my lack of interest in a cure prompts anger. One of my most strident critics wrote that “I know your school, and have seen dozens of minds and spirits broken by it”. I am not really sure how I break spirits and minds by embracing an identity tied to disability and disability rights; however, this charge has been levied by others. Some comments have been very harsh. In one of my earliest posts circa October 2007, “Why Focus on Cure”, I questioned the larger significance of Christan Zaccagnino’s decision to go to China for a surgical procedure designed to cure or improve her functioning. Ms. Zaccagnino commented “I am mrs zaccagnino and you have no idea what you are talking about asshole.” Another person wrote: I pity you Bad Cripple. You preach equality for disabeled persons in wheelchairs and criticize Ms. Zaccagnino for her decision to think beyond her condition and strive for her dream of walking again. I walk on two legs and I dont consider myself Ms. Zaccagnino equal, because she is exceptional. I can only pray to have half her strength, perseverance and passion. Her will and positivity seem to be beyond what your acrimonious logic can comprehend. "Why focus on a cure?" because some are unwilling to accept anything less then their dreams. Shame on you to disparage those who dreams. Shame on you.

I remain perplexed by these comments. I have repeatedly stated a cure for spinal cord injury is a laudable goal. If a person wants to focus their life around a cure to spinal cord injury so be it. I have not nor will I ever comment on the current status of advances in the cure for spinal cord injury. People devoted to cure know far more than I ever will. But I do have the right to question and analyze the larger social significance of this effort and the impact it has on the lives of all people with a disability. I am afterall a disability studies scholar and activist. I have recently begun to wonder though if some of those dedicated to a cure for spinal cord injury are creating a cult like existence for themselves. Even the slightest criticism of the cure industry prompts a strong reaction. For instance I have recently taken some heat from those involved with Rutgers University Care Cure Forum. This website offers a dizzy array of over 70 different forums. I find little of value in the Care Cure forum despite the fact I look at it every few months (I am specifically looking at comments on sports equipment). I am decidedly uncomfortable with the praise heaped upon Wise Young of the W.M. Keck Center. “The mission of the W. M. Keck Center for Collaborative Neuroscience is the development of effective treatments for acute and chronic spinal cord injuries and to move these discoveries from laboratory to human lives as rapidly as possible.” I do not take exception to this goal but I do worry about the impact it has on the lives of people with a recent spinal cord injury. The same can be said when I look at other powerful institutions such as the Reeve Foundation and the Miami Project that push for a cure to spinal cord injury. There is a zealous following to the cure industry I am simply divorced from. I am not willing to spend my limited time searching out clinical trials when I encounter needless bias every time I leave my home. I have always maintained the problems associated with spinal cord injury are largely social. Of course some people struggle with paralysis. For instance, Symanski went into great detail about her physical struggles with her bowels and autonomic dysrelexia. I always end up returning to what Robert Murphy wrote long ago—disability is a social malady. And this is where I think our resources and efforts need to be directed. Social supports that make life possible post spinal cord injury. So to my critics I say more power to you. I wish you well and consider us to be on parallel tracks. Go ahead and focus on cure. It is an altruistic goal. I on the other hand prefer to focus on equal rights.

Hard to Believe: Sports Illustrated, Teddy Kremer and Feel Good Stories

2013-04-25T07:03:00.003-07:00

Last week I saw your typical feel good story on the news. Teddy Kremer, a 30 year old man with Down Syndrome served as honorary bat boy for the Cincinnatti Reds. The game was a blow out. the Reds won 11-1. What was of interest, the "heart warming" story, was Teddy Kremer's request. He asked Todd Frazier to hit a home run. In archetypical baseball lore dating back to Babe Ruth Frazier came through. He hit a bomb to deep center field. No big deal given the game was well out of hand. What took place when he crossed home plate became the story. Teddy Kremer was thrilled. I recall watching the highlights and am not afraid to admit I got teary eyed. Talk about joy and love for the game! Teddy Kremer expressed such raw emotion it brought back vivid memories from my own childhood when I lived and died with each and every NY Mets win or loss in 1969. Baseball with all its ups and downs, heart breaks and joy filled my life at a time when I was morbidly sick and hospitalized. Oh the look on the face of Kremer and Frazier. Even the prerequisite umpire's stony faced veneer cracked--he had a wide grin on his face as he watched Kramer. The crowd cheered louder for Teddy Kremer's reaction than it did for Frazier's home run. And this is exactly where I expected the story to end. A classic feel good moment in baseball. Numerous local television stations showed the video clip. See it for yourself:

I forgot about Teddy Kremer until yesterday when I read a great article by Paul Daugherty in Sports Illustrated entitled "Reds Batboy with Down Syndrome a Great Story, But it Shouldn't End". Link: http://sportsillustrated.cnn.com/mlb/news/20130423/teddy-kremer/ Daugherty acknowledges feel good stories are easy to write and an integral part of baseball lore. ESPN has taken interest in Kramer as has the Speaker of the House John Boehner. Kremer already had some familiarity with the Reds. He served as batboy in August 2012 (his parents won a silent auction at a fund raiser and paid $300). According to Daugherty, Kremer has been batboy twice. The publicity has been uniformly positive. Again, this is where 99% of stories end--especially in sport reporting. But not this time. Daugherty argues that "its time to do better. Kremer's story can't end here. Worse, it can't continue the same as now, with Kremer the 30 year old man making cameos racking Reds bats, whenever the sentiment strikes. The mascoting of Teddy has to end before it stops being wonderful and becomes something far less. These stories have to become more nuanced as our society has become more attuned with the lives of our citizens with disabilities. There is a subtle bend in the road, where good and right run head on into patronizing and exploitive. That curve hasn't been reached. But its just up there in the near distance. The next time Kremer is at Great American Ball Park it should be as an employee of the team".

When I read the above I almost fell out out of my wheelchair. I read that passage again and again. Sports Illustrated bemoaning feel good stories? Sports Illustrated calling for a more nuanced understanding of disability? I am stunned. Reds chief operating officer Phil Castellini is quoted as stating Kramer is "incredibly capable. He could do all kinds of stuff. I could put him in customer service any where in the building and he'd continue to put smiles on people's faces". Teddy Kremer's mother notes that her son has worked a few part time jobs and employment with the Reds would be a huge boost to his self esteem. She also soberly notes he would need to learn how to use the mass transit system.

The above is a radical departure from your typical story about disability. I have been energized by the fact this story appeared in a staid publication such as Sports Illustrated. This is about as mainstream as one can get. Buzzed on too much tea this morning I started dreaming big. The Reds could hire Kramer and many other capable men and women who have Down Syndrome. They could foster a relationship with the Down Syndrome community and become not just an employer but powerful advocate for people with Down Syndrome. I can dream bigger! Major League Baseball could become the spearhead for a work program for people with a host of disabilities. MLB could encourage (require) all teams to hire people with a disability. One could even make the case that every team employ a certain percentage of people with a disability. This could be marketed as the next great social revolution in baseball history. The effort could be tied to Jackie Robinson's legacy as the first black man to break the color line. Label this jobs program something catchy like "42's Legacy" and build the infrastructure for a jobs program. Just think of the exposure. Tens of millions of people who attend baseball games would encounter people with disabilities who are employed. This could truly revolutionize people's perception of disability. If Americans understand anything it is baseball and work. Wow, I am dreaming big today!

ADAPT Protests: A Veritable Black Hole

2013-04-23T08:04:00.000-07:00

I have always deeply admired ADAPT. I half jokingly refer to them as the Special Forces of the disability rights movement. ADAPT was formed in 1978, the year I was paralyzed. Those interested in the disability rights movement are familiar with the history of ADAPT (American Disabled for Attendant Programs Today). Briefly, ADAPT was started by 19 disability rights activists in Denver. These men and women surrounded a Denver bus at the corner of Colfax and Broadway. Like virtually every bus in the United States, Denver mass transit buses had no wheelchair lift. 19 proud and pissed off people surrounded an inaccessible bus, disrupted service and loudly proclaimed they were not going to leave. It was civil disobedience at its very best. The Denver demonstration had a domino affect. Comparable protests took place in other cities. Success however did not come quickly. It was not until 1982 that Denver ordered 89 accessible buses. Other cities quickly followed Denver's lead, including New York City. Today, bus service in NYC and most major cities is reliable and accessible.

I have been thinking about the humble origins of ADAPT. ADAPT still exists and remains on the front lines of the battle for disability rights. In fact ADAPT has been in Washington DC protesting. Arrests have been made. 41 in fact. I would think this is a news worthy event. I recall last year ADAPT made the mainstream news in part thanks to the arrest of the actor Noah Wyle. Since ADAPT arrived in Washington DC a few days ago I have scoured various news outlets for stories. I found a grand total of none. Not one. Google the web: "ADAPT protests Washington DC" and one will find references to last year's arrest of Wyle. Not a word has been written about the actions of ADPT this year. Not one article in the Washington newspapers, Huffington Post, New York Times, CNN, MSNBC, etc. It is as though ADAPT is protesting in a black hole. I find this deeply disturbing. The visuals ADAPT presents are striking. Hundreds of people with every sort of disability one can imagine protesting. Long lines of wheelchairs going down the street. Juxtapose protestors with disabilities against the iconic buildings of Washington DC and one would think this would sell a lot of newspapers and get television viewers to tune in. Um, no. And thus I wonder why. Why is ADAPT being ignored by every major news outlet? I think the complete lack of attention is based on the deeply internalized belief that disability is first and foremost a medical issue. Disability is not about a disenfranchised population of people but rather a highly individualized physical deficit. I have railed against this line of thinking consistently as has ADAPT, Not Dead Yet, the Disability Rights and Education Defense Fund, and many other disability rights groups too numerous to mention.

As I see it, ADPAT actions in Washington primary aim is to galvanize the disability rights movement. I wish this were not the case. In fact I wish the media would give ADAPT the attention they deserve. Disability is a social problem--a point the vast majority of people do not understand. I find it fascinating how disability based bias is acted out. As Mary Johnson, long time editor of the Ragged Edge, pointed out it is not as though people are taught to be biased against people with a disability. People are taught disability is different--again we people with a disability are "special". When we fly on a plane we need to special serves. We get a special education. We have special buses. We have special entrances to buildings. We have special schools. We have special lifts and elevators. None of this is taught. People suck up this idea of special like a sponge. I was think of this when I saw the video below:

As noted on the video the police completely ignored protestors that used a wheelchair. Instead the police go after a bipedal protestor and take him down with force. The police took down this bipedal man who could not hear because it is an ordinary event. The visuals are mundane. The outcome is clear: the man will be arrested and released. Why did the police utterly ignore protestors that used a wheelchair? I am willing to bet they dismissed the protestors that used a wheelchair without thought. This is how deeply ingrained disability bias runs. Perhaps I am wrong. Perhaps the police knew all their accessible paddy wagons were in use. Maybe they were instructed wheelchair dumping was not permitted. Wheelchair dumping is a police procedure in which the police come up behind a person using a wheelchair and lift the back of the wheelchair up and dump the person on the ground. This is exactly the sort of imagery that makes the police look bad. You do not dump people out of their wheelchairs. This is socially unacceptable.

The only way to follow ADAPT is via their website and social media. See http://www.adapt.org/ Many people associated with ADAPT have been posting photographs on Facebook. The images are striking and uplifting--note I avoided the word inspiring. ADAPT is uplifting in the sense I am encouraged that so many people are willing to devote their time and energy to a civil rights cause. Many people are willing to travel to Washington and brave the streets where they could be subject to arrest. These people have my utmost respect. In the post 9/11 era I am not willing to take such a risk. While I admire people willing to to dissent and protest, I fear retaliation and arrest given the Patriot Act can be used and abused. I was shaken by the actions of the government in Boston. Martial Law was declared. Tanks and hummers were deployed. Black hawk helicopters flew over people's homes. The excessive show of force was a shock to me. The suspension of civil liberties, such as walking outside your door step, stunning. All this in the name of national security. All this to apprehend a 19 year old man. So yes I fear the national security state and am delighted to know some of my peers are willing to protest.

NYC Taxi Service: Bloomberg as Bigot

2013-04-21T14:22:00.003-07:00

New York City taxi service is unique and in many cases reflects the culture of the city itself. If you use a wheelchair NYC taxi service is on par with Third World countries. It is uniformly bad--bad as in biblically bad. Taxi drivers as a group are uniformly hostile to any person with a disability. A special disdain exists if you use a wheelchair or have a guide dog and exhibit the temerity to hail a cab. Lots of tricks are employed, required really, to get a taxi in NYC. My friend Steve Kuusisto who uses a guide dog gets hotel doormen to hail a cab for him. I too have used this ploy. I prefer to ask a well dressed man or woman to hail a cab for me. I wait in hiding between parked cars. When the taxi stops I emerge and grab the door so the taxis cannot pull away. I have been cursed at, screamed at, and been called a bastard in many different languages. Gee, I get the feeling I am not a valued customer.

NYC taxi driver hostility has not changed much in the last twenty years. On the rare instance I hail a taxi I assume the driver will be hostile. Taxi driver hostility directed at people with a disability is significantly worse in my opinion. The increased hostility stems from the Bloomberg administration public and baseless opposition to making the taxi fleet, the so called taxi of tomorrow, wheelchair accessible. Bloomberg has made some outlandish statements that are devoid of reality. My favorite was Bloomberg's suggestion that hailing cab from the street was too dangerous for a person that used a wheelchair. I also heard Bloomberg state it was too costly to make the taxis accessible. Worse yet, taxis would be heavier and less fuel efficient. Bloomberg noted taxi drivers in accessible taxis would be very far away from the passenger and would lose out on tips. None of Bloomberg's statements made to date have a foundation in truth. If you doubt me I suggest you read pretty much anything Simi Linton has written. She has spear-headed the opposition to Bloomberg and earned my utmost respect. Go Simi go!

This morning I was surfing the internet and came across the following: http://www.accessibledispatch.com/ This site is fantasy land. It is so preposterous I do not even know where to begin. Accessible Dispatch is a slick little site. If you had never been to NYC or hailed a taxi in any city in the world one could think hey this is cool. Phrases such a "the city awaits you" and "its about inclusion" are highlighted on the welcome page. Under How it works is the following: "Once our service is requested, we will dispatch one of New York City's wheelchair accessible taxicabs directly to your pick up location in Manhattan. Accessible Dispatch is available 24 hours a day, seven days a week, and requires absolutely no advanced reservations, although you may place an advance service order if you so wish. There are currently 233 yellow wheelchair accessible taxicabs operating in the city of New York". A person that uses a wheelchair can send a text, phone call, use an app or order a taxi on line. Here is what the website and Bloomberg gloss over. There are over 23,000 taxis in New York City. 233 are accessible. The odds of finding an accessible taxi going by you are less than 2% In Bloomberg logic what is the best way to address this gross inequity? Create a dispatch service. Really? Somehow I do not feel ever so special.

Imagine this: You need a cab. It is April. It is Friday at 6:30PM. A huge thunderstorm is approaching. It is windy and cold. You are near Madison Square Garden and the Knicks are playing. Taxi after taxi is blowing by you. And what does the Bloomberg administration suggest you do? Call or text for a taxi. How long will one wait? Um, till hell freezes over. Honestly, think about this scenario. Really think hard. Consider the ADA was passed into law 22 years ago. You use a wheelchair and according to the Federal Government have the same civil rights as all those bipedal people with their hands up hailing a taxi. Taxi after taxi stops for bipedal people. What are we people who use a wheelchair supposed to do? Call or text for a taxi? Use an app? Give me a break. Have you ever tried to use 311? Good luck with an endless chain of menus that go nowhere. What gets me the most is the leap in logic made by the Bloomberg administration. Who uses a wheelchair? Meek jobless wenches such as myself happy for any handout the almighty bipedal humans will dole out. Our lives cannot compare to the honorable Mayor Bloomberg. And yes there I go again. The bitter cripple with a chip on my shoulder who wants to takeout all his anger out on others. What is not considered is where that anger is coming from. Could it be that I get the shaft every time I try to hail a taxi, get on a plane or a train? Could it be that my civil rights are violated virtually every time I go outside my home? This is where my anger stems from--commonplace and socially sanctioned bias. The word used to describe the sort of civil rights violations I experience is bigotry. Am I mad? You bet your ass I am. My anger has nothing to do with my paralysis or use of a wheelchair. My anger does not come from some pathological form of narcissism. It is never all about me. It is about the next person with a disability and the fervent wish that person does not encounter the same needless social and architectural barriers I had to dismantle.

Addendum: Please see comments for correction from Taxis for All director.

Shane Burcaw: Laughter is Not Always the Best Medicine

2013-04-17T11:43:00.000-07:00

Earlier this month I came across the name Shane Burcaw. Apparently this man wants to be on the Ellen DeGeneres show. Needless to say this effort did not impress me and I quickly concluded it was the typical use of social media by a young person. Apparently he created a twitter bomb to get the attention of Ellen, an effort that generated a little bit of press and much discussion on reddit. Thanks to Alice Wong I realize my quick dismissal of Burcaw was in error. This man highlights a divide I have written about in the past: there is a dichotomy between people such as myself that came of age well before the ADA was passed into law and those that came of age after the ADA. I refer these two groups of people as pre ADA cripples and post ADA cripples. Part of the divide is simply age. I am 53 years old. Burcaw I believe just turned 21. I have a PhD while Burcaw is earning his BA. I am married, divorced and have a son Burcaw's age. We are at very different stages of life. It is important to note these basic differences because I am severely critical of young men and women, post ADA cripples, that have not been taught about the cultural implications of disability or the history of disability based oppression. In part I am happy some young people with a disability are blissfully unaware of the sort of civil rights violations that were once common place: forced institutionalization, involuntary sterilization, and ugly laws. Yet I am also stunned at how some young people with a disability use their disability. For example, I read Burcaw's blog Laughing at My Nightmare, and was taken aback at the repeated use of trite and uninteresting lines such as: "If you can take anything from my life, it should be that a positive attitude and sense of humor can go a long way toward overcoming your own problems no matter what they are." Burcaw is portraying himself as the plucky cripple who finds humor in his situation. He states he wants to make people laugh and thinks he is good at it. Using the old line from Readers Digest he believes laughter is the best medicine. He has even formed a non profit laughingatmynightmare.com and in some videos I have seen t-shirts with the initials LMN.

Burcaw is sun shine yellow optimistic. I do not share Burcaw's optimism. I do not find him funny. In fact, he has cast himself into the deep end of the inspiration porn pool. The short video "Happiness is Always an Option" is typical inspiration porn: http://thechive.com/2013/04/10/happiness-is-always-an-option-video/ Burcaw is characterized as having "just about the best attitude a human can hope to have". Others repeatedly state Burcaw is extremely courageous and inspirational. He is funny, smart and brave. His story will blow your mind. Burcaw chimes in and states "Don't underestimate the power of a positive attitude". The mainstream media is sucking up Burcaw's inspiration porn like it is nectar of the gods or mothers milk. In contrast I sit stone faced and wonder what sort of person could possibly take this seriously. If you tube is any indication the vast majority of people think Burcaw is awesome. At you tube, My Last Days: Meet Shawn Burcaw, is twenty long minutes of platitudes. It has been viewed over 100,000 times since April 8 when it was posted. The video has been liked by over 4,000 people. A mere 21 people, yours truly included, disliked the video. Almost 700 people left comments and about 99% used the word inspirational. I just do not have the heart to embed this video.

Scott Hamilton, a former Olympic figure skater who had cancer, once used the line "the only disability in life is a bad attitude". This tag line has been used repeatedly in inspiration porn. Good visuals, meaning the more disabled a person is, the greater the impact the tag line and photo can have. The most well-known visual porn photograph I am aware of featured Oscar Pistorius running next to a little girl who, like Pistorius is a double amputee. When I see this photo I am not impressed. In fact I get angry at the disparity between the image and reality. I also think of Stella Young, an Australian disability rights advocate, who wrote "The statement the only disability in life is a bad attitude puts the responsibility for our oppression squarely at the feet, prosthetic or otherwise, of people with disabilities. It's victim blaming. It says that we have complete control of the way disability impacts our lives. To that, I have one thing to say. Get Stuffed."

Get stuffed Mr. Burcaw. Your superficial notion of optimism is demeaning. It is also devoid of any factual basis. Take the image and tag line discussed above. The prostheses depicted in the photo of Pistorious and the little girl cost $20,000. Those limbs cost more than a brand new Fiat or Ford. Let me pose the following. A child who is a double amputee goal is to compete in the ParaOlympics. To succeed at this level of athleticism the child will need specialized and costly prostheses. This child's parents request the local school board to purchase such limbs. According to a recently released DOJ guidelines a powerful case could be made the school would be legally required to make such an accommodation to insure the child be empowered to participate in sports. An optimistic outlook is not going to the job done in this instance.

While I am railing against Burkaw in particular it is not him I am upset with. He is just one of many people that fails to realize inspiration porn shames all people with a disability. An optimistic outlook gets one only so far. The fact is Burcaw happily dismisses the glaring social problems associated with disability. The social situation people with a disability confront is not funny or inspirational. In fact to understand disability as an example of civil rights or human rights violations requires much thought and an intellectual leap in logic. Not many have made this leap in logic. It is all too easy not to mention rampant unemployment or the utter lack of accessible housing. No mention is made of inaccessible subway systems or the systemic pattern of abuse directed at people with a disability on the part of major airlines when they try to fly from place to place. Burcaw I would suggest should stop trying to get on the Ellen DeGeneres show and spend a bit of time reading about disability rights. There is a vast literature available at every major college in the country. In fact I have an even better suggestion. He should join ADAPT and join those that will soon descend upon Washington DC.

ReWalk: A Plea for Common Sense

2013-04-16T12:13:00.000-07:00

I have blasted news reports that gush about the exoskeleton. Typical news stories consider the exoskeleton a "miracle" that enables paralyzed people to walk again. References to Iron Man abound as do comparisons to being "wheelchair bound" versus being a "super hero". The message is not subtle: walking is the best means of locomotion. Using a wheelchair is inherently bad. A wheelchair is an antiquated piece of technology and the exoskeleton is here to rescue paralyzed people who are "bound" to their wheelchair. This line of reasoning is misleading at best and relies on ignorance. From my perspective, I think a wheelchair is a phenomenal invention. It makes my life go. It makes the lives of millions of people go. It is essential technology with a long history of success. A wheelchair is a powerful symbol of empowerment. This is not the way the vast majority of people perceive a wheelchair. In fact the wheelchair is the symbolic icon for all things disability.

While I despise the symbolic implications of the exoskeleton, I will acknowledge it is worthy of research. The human body was not designed to be paralyzed. I know this from first hand experience and I cannot recommend the experience. There are a host of health related problems associated with paralysis. There are also a host of solutions for paralysis specific health problems. With time, education, social supports for needed durable medical goods virtually all health related problems associated with paralysis can be avoided. I am extremely skeptical of the clinical use and utility of the exoskeleton especially when compared to well established rehabilitation methods. There is no escaping the fact the exoskeleton is sexy. There is also no escaping the fact traditional rehabilitation is decidedly un-sexy. Since the first Iron Man movie came out in 2008 the exoskeleton has been at the forefront of the imagination. It is fun to imagine a man in the exoskeleton hurling cars. No need to ticket or tow a car out of handicapped parking! Reality however is quite different.

The exoskeleton emerged from the military industrial complex. Corporations such as Raytheon and Lockheed Martin have gone through a host of exoskeleton type devices. The military use of the exoskeleton is not hard to figure out--musculoskeleton injuries are the leading cause of disability among soldiers. These injuries could be prevented if soldiers could carry more weight without straining their bodies. Enter the exoskeleton. As near as I can determine Raytheon is out o the exoskeleton business. Lockhead Martin has the "Human Universal Load Carrier" (HULC). The Defense Advanced Research Projects Agency (DARPA) appears to have already abandoned the hard exterior shelled exoskeleton in favor a "warrior web". This may sound cool but is not. Gone is the idea of super soldiers throwing cars and tanks and enter a light weight suit that empowers a soldier to carry heavy loads without strain on the body. The point I am trying to get at is that the exoskeleton is a cash cow. Commercially the biggest beneficiary is Ekso Bionics, a California based company. Ekso Bionics has been working very hard to get the exoskeleton into rehabilitation hospitals and the homes of paralyzed people. This worries me. Russ Arnold, the chief technology officer at Ekso Bionics has stated "Our goal is to get the exoskeleton out to the home. Instead of going to a rehab center they can do rehab in their home". I am sure this is music to the ears of health insurance companies. Think of the savings! No rehab. No nursing. No physical therapy. No Occupational therapy. No expensive durable medical goods. We can just buy an exoskeleton and be done with a potentially expensive life. It is no wonder the cure industry and health insurance companies are thrilled with the exoskeleton. This is one stop shopping.

The media buys into the utility of the exoskeleton without reservation. Everyone wants to walk. This is a given. The exoskeleton is the essence of cool. The rehabilitation business loves the exoskeleton too. It is the best, newest and most advanced form of technology. We can hire a bunch of technology guys and do away with as many health care professionals as humanly possible. And we all know technology can cure all our problems. Talk about a patient magnet! Thus when I read about the exoskeleton in the newspapers my heart sinks. Newly paralyzed men and women are going to be seduced into thinking they will walk again. Remember walking is good being wheelchair bound is bad. Again, it is possible the exoskeleton has some utility. I differ in that I cannot escape at what cost, symbolic and practical, will the exoskeleton have?

The New York Daily News had a long story about the exoskeleton: "Bronx VA Doctor Helps Paraplegics Walk with Exoskeletons". See link: http://www.nydailynews.com/life-style/health/doctor-helps-parapalegics-walk-exoskeletons-article-1.1315915?print The article in question is typical superficial heart wrenching crap. Ann Spungen, lead researcher and MD gushes "In 22 years that I have been working in this field, its the most exciting intervention to come along". Apparently the exoskeleton is being studied at the James J. Peters VA Medical Center in the Bronx. Nine men and women who are paralyzed are involved. The VA is using the $60,000 Israeli model called the "ReWalk". According to the Daily News the "ReWalk has been a "life-changer". I agree. The ReWalk could change lives but not for the reasons lauded. The VA and its researchers have far more modest goals. Funding provided by the National Institute for Health (NIH) is designed to demonstrate that the "exoskeleton walking device permits investigation of the potential benefits of frequent upright posture and walking on many of the secondary consequences of spinal cord injury. The exoskeleton is about walking within very strict parameters. The exoskeleton is being studied to perhaps alleviate the "extreme sedentary lifestyle from paralysis that contribute to many secondary medical problems such a diabetes and insulin resistance, obesity, constipation, poor blood pressure regulation, cardiovascular disease, reduced quality of life and more".

Technically the headline of the Daily News article is correct. The ReWalk is helping paralyzed men and women walk again. This effort however has nothing to do with functional walking. Thus I find the story grossly misleading. The ReWalk is about walking as it relates to well-known complications associated with paralysis. This is not a sexy story but the reality of life with paralysis. I doubt people want to hear about how the bowel habits of the participants that have changed for the better. Comments such as "I am no longer constantly constipated and my blood pressure is rock solid" does not sell newspapers. What struck me though was the purpose of the study conducted by Ann Spungen: "the extreme sedentary lifestyle from paralysis". Why is the all important question here. Why do many paralyzed people experience secondary medical complications caused by an extreme sedentary lifestlye? I can think of much better approaches to this. Provide an extended rehabilitation experience. Do not discharge a person until they have firm control of their bladder and bowels. Be sure a person is aware of the complications associated with paralysis and knows what to do if something occurs. Provide your typical paraplegic, male or female, with a state of the art and well fitted wheelchair. Design an exercise program for this person and expose them to a host of different adaptive sports programs. This is why I seethe when I read about the exoskeleton. Researchers are happy to shell out $60,000 on an exoskeleton. But the same researchers will never get to funding for a high end Panthera X wheelchair that costs $11,000. Forget about a handcycle for biking. They cost $3,000 and up. No sit ski either. These cost $4,000 and upwards. How about a racing wheelchair for exercise. No chance. Forget about a good wheelchair cushion to prevent pressure sores. These are too costly as well. And what about a job that requires a typical commute and empowers a paralyzed person?

Lets do a little basic math. Exoskeleton $60,000. This will require computer expert and multiple specialists in health care who earn a good living. Contrast this with a research program that after exposing a person to various outdoor activities will purchase the following: $11,000 wheelchair, $500 wheelchair cushion, a $5,000 handcycle, a $4,000 sit ski and most importantly a job training program that allows for an initially flexible schedule. Total material costs are a little over $20,000. I would be willing to bet a newly paralyzed person that received this sort of support would thrive. I bet an extreme sedentary lifestyle would be unimaginable. The sort of program I suggested can change lives for the better after a spinal cord injury. Instead a questionable military based idea gets all the funding. This is the perfect storm of misplaced symbolism associated with walking, corporate spin, and profit, combined with our love affair with technology.

Here is what I envisioned two summers ago over a camp fire in the Red Woods outside of Santa Cruz. I will admit some drinking of adult beverages was involved. The men present at this campfire decided to form a club called Shit and Piss. If we could get every man and woman who was paralyzed to shit and piss with ease the world would be a better place. Classic lines were exchanged such as "Man, the way you manage your bladder sucks". Much laughter ensued. Better yet, there was an endless supply of duct tape. Joking aside, the vast majority of problems associated with paralysis can be mitigated. What is absent are the social and practical supports that make one's life possible. We people who experience a paralyzing injury do not need the exoskeleton. Our needs are more basic: a good long lasting wheelchair and cushion, affordable adaptive sport gear if desired, job training, transportation, and housing. With these typical needs in place an extreme sedentary life will be easily avoided.

Restoring Faith in People

2013-04-10T13:40:00.002-07:00

I truly was bothered by my experience over handicapped parking that I wrote about. Today I was doing errands and came across a common problem--shopping carts filling up handicapped parking spots. One strip mall in Connecticut is particularly bad in this regard. The strip mall has a Trader Joe's, big box office store, and Rite Aide among other smaller shops. As I was pulling out of handicapped parking I saw a woman leave her shopping cart. I thought do I or don't I? Do I really want to risk being called a "bitter" man whose soul is rotten? Wow, what a difference a day makes. I rolled down my window and said excuse me, "Do you know that if you leave the cart with all the others it will make the spot useless for most people with a disability"? The response was "I had no idea. I am sorry. I will never do that again." I added that I have asked store owners to try and stay on top of the carts blocking handicapped parking. No change has taken place. This woman replied "I am going to complain every time I go to Trader Joe's. I will also move the carts whenever possible". This seems to be the appropriate response if not a bit over the top. Friendly and pro active is a good thing. Even if she never complains and simply moves one cart from handicapped parking progress has been made. Perhaps she will tell others. In my dreams a veritable snowball going down hill will be created. I will never see a shopping cart in handicapped parking. Sadly this is grossly optimistic but a man can dream. And I want to note I did not make a single complaint about why twenty plus years after the ADA was passed into law I still need to educate people about disability.

Handicap Parking and Bitterness

2013-04-09T06:39:00.002-07:00

I lost my temper last night. This is exceedingly rare because I very rarely lose my temper. When I do lose my temper it is with good reason. Last night was ugly and I share some blame in the confrontation I had. I was teaching last night. My class meets once a week and ends around 9:30PM. It is a big class, about 30 students. I try to keep a discussion going but it is not always possible given the size of the class. Few students are willing to speak up in a classroom filled with so many people. I get this especially since I was mute as an undergraduate and never spoke in class. Last night was rough. I consider this the doldrums of the Spring semester. The mid term is over and a well established pattern has been set. The weather is getting warmer and student minds are wandering. In short, I have to work very hard to maintain student interest. At the end of class I am very tired.

The above sets the stage. I am ready to leave and look at the clock. It is 10PM. I am more tired than usual and look forward to my rum and coke before I go to sleep. I parked nearby in handicapped parking because my brief case is always heavy. It takes two seconds to realize I am screwed. A car is parked inches away from the passenger door (I get in on the passenger side) and is blocking the curb cut. It is dark and late. I am alone without any way to get in my car. My cell phone battery is dead. I wait a few minutes hoping the person blocking me in will appear. Waiting seems fruitless so I find the nearest curb cut in the poorly lit parking lot and seek out a campus phone. I call security who are not impressed with my predicament. I get a cursory we will send someone over. As I head back to my car it does not take much imagination to realize I am screwed. I am officially tired and angry. My options are severely limited. Security will show up eventually. They can ticket the car or even tow it. This will take time--lots and lots of time. I get angrier because this is hardly an isolated event as it happens far too often. Suddenly I see the lights on the car blocking me flicker to life. I see a woman my age and what I presume to be her son walk toward me. Again, I am angry. I ask in a clear and somewhat loud voice "Do you realize you are in handicapped parking and are blocking the ramp". I get a cursory "sorry". The body language and attitude is clear--this woman does not care one iota. She is annoyed by my presence. I am mad. She is confrontational--I get it. Again I accept some blame in what transpired. I tell her "Your sorry does not do me any good. I have been waiting around and I have called security". She replies "You people are so bitter. I said I am sorry". By her tone and body language "I am sorry" translates into "fuck you". I reply "It is the law. The law states you cannot park here without a permit. I have been forced to wait." She replies "So, I said I am sorry. You are bitter and will pray for your rotten soul". My anger increases quickly as she goes on to say "You just want to take your bitterness out on others". Stunned and furious I am very tempted to wait behind her car so she cannot exit. It takes about two seconds to realize this idea is counter productive. This woman subscribes to an antiquated notion of what disability entails. I am clearly subhuman. In her estimation I am bitter and in need of charity and her prayers.

I am still upset about last night. She is not the first nor last person to state I am "bitter". Bitter in this woman's estimation means I am bitter about my paralysis, my plight in life and fact I use a wheelchair. I am the cripple archetype. She on the other hand is virtuous. In spite of my anger she will pray for my "rotten soul". I am supposed to be grateful for her charity and pity. Her perception of disability was formed long ago. She went to segregated schools. Prior to 1975 people like me were not permitted to enter schools and receive an education. The crippled were sent to institutions and people prayed for us. The crippled did not get on the bus. The crippled did not get on a plane. The crippled did not get on the train. The crippled did not have a job. The crippled were out of sight and out of mind. I despise this line of reasoning and history of oppression. Here is why I remain upset: this woman, like me, is an archetype. Millions of Americans think disability is inherently bad and that all crippled people are bitter. My problem in this woman's estimation is about one thing: my inability to walk. She utterly fails to see disability from any other perspective. This requires a leap of logic millions of people fail to make. It is not the crippled body that is at fault--it is the refusal to value that body. The incident last night was minor but is symbolic of a much larger social problem. Note the words "social problem". Disability as Robert Murphy noted long ago is a social malady and the woman I met last night has a social disease--pun intended.

So am I still angry? You bet I am. I am angry because this woman is a lost cause. She will never learn or change her views. She is but one of millions of people that have an antiquated and demeaning perception of disability. This is easily explained away because I am bitter and all blame rests on my shoulders. Well, this bitter man remembers the woman's license plate number from last night. A silver Suburu with Connecticut plates 765 YOA.

Fear Exists for a Good Reason

2013-04-06T09:50:00.001-07:00

Over the past week I have followed the story of Amanda Baggs via various neurodiversity blogs. Baggs who I mentioned in my 500th post is an Autistic and a fascinating writer. She is most well known for her You Tube video "In My Own Language". Based on what I read, Baggs had gastroparesis that caused several instances of of aspiration pneumonia. As I understand it Baggs needed a feeding tube inserted to increase her nutrition and lower the risk of aspiration. This is not complex medical care--I suspect it is standard operating procedure. But her experience has been anything but standard. Multiple neurodiversity blogs and people directly in contact with Baggs have reported she was repeatedly questioned about her decision to get a feeding tube. Thankfully the neurodiversity community in particular and the disability community in general leaped to help and protect Baggs. Her experience in a Burlington Vermont hospital was a nightmare. Fortunately she not only survived but is in fighting spirit. She is writing about what she experienced and its implications. See: http://youneedacat.tumblr.com/

I was deeply moved by Baggs most recent post. What she wrote today is shocking and a testament to how deeply ingrained disability based bigotry is within the American health care system. Below is her entire post.

“Are you at peace with your decision?”

Before I got my feeding tube. After I’d already signed an informed consent form. A pulmonologist came into my room with a gaggle of interns and residents behind him. People who were learning from him. People who looked up to him as a teacher and role model.

He had seen my cat scan. He knew how many times I’ve had pneumonia recently. He knew it would keep happening if we didn’t find a way to stop it. He knew that pneumonia is a deadly disease and that my health was worsening with each infection. He knew how many doctors had tried to talk me out of choosing the feeding tube — choosing to live.

“Are you at peace with your decision?” Is a question I would expect to be asked repeatedly if I’d chosen to avoid treatment and go home and wait to get the infection that would kill me. Not a question that goes with choosing life. He asked me at least three times in a row.

I had a friend who came to visit from out of state, in the room with me at the time. She came because she heard I had pneumonia. Her father died of pneumonia. She was terrified for my life. She witnessed this conversation — easily, as she put it, the most genteel of the ways I’d been pressured to die.

And yet she likened it to the recommended harassment that people who choose abortion get — or for that matter, people who choose not to abort a fetus with disabilities. She said it was bullying, harassment, pressure to end my own life, no matter how genteel it looked on the outside. Who the hell gets asked repeatedly if they’re at peace with wanting to be alive? For me, choosing a feeding tube is choosing life. There were risks, there remain risks, but the risk of not getting the tube was imminent death, so, yeah. A no brainer, for me. When you choose between two risky things, you choose the one with the most possibility of survival. And feeding tubes are safer than aspiration pneumonia by far.

Are you at peace with your decision? Really? Seriously? Who asks that? Someone profoundly uncomfortable with the kind of life that requires certain kinds of technology. Someone who overtly or covertly hates disabled people.

I intend to use the life this feeding tube gives me, to ensure that no other patient in this hospital has to go through what I’ve been through. That nobody gets asked this question for choosing to live. Not even once. That doctors don’t get to try to persuade patients, especially disabled and other hated patients, that its better to reject life saving treatments. Regardless of what the doctor thinks. When I’m through with them, when the Vermont disability community is through with them, they will no longer be allowed to go there. They can stay bigots if they feel like but they won’t be allowed to express it on the job.

Because we don’t just naturally want to die the moment our body requires some kind of nonstandard way of sustaining itself. Right now I am hooked up to a machine pumping food into my intestines and I LOVE IT BECAUSE IT MEANS LIFE.

Genteel pressure to die. I too experienced that genteel pressure. Such pressure is put in ever so polite terms. For Baggs it was "Would you like to consider alternative treatments"? The non genteel interpretation is "Would you like to die"? For me a hospitalist stated "We can make you comfortable if you decide to forego antibiotics". The non genteel interpretation: "We can let you die." This genteel pressure to die is not out of the norm. In fact I cringe when I hear the term "patient centered care". My translation of "patient centered care" is "you are on your own". Being on your own in a hospital is dangerous for any person but for a person with a disability the risks are exponentially greater. We people with a disability represent the limits of medical science and its failure. We are perceived to be in pain; suffering horrific indignities because we have lost our autonomy. Our bodies are compromised, abnormal. We are confined to a wheelchair. We are bed bound. Our life is a disaster. But wait! There is hope. We miserable cripples have the power to say no more. Hence the physician "caring" for Baggs asks "Are you at peace with your decision". The internists and residents that accompanied the physician have learned a lesson in empathy--or at least that is likely what the physician in question believed. I would offer the lesson learned was much more basic. Death is preferable to living a life with a disability. Who would want to live like that? Imagine if you had Autism. How horrible. I suggest we need to ask a very different set of questions. In Baggs case, the question is not if you want to live but rather how we can we as physicians charged with your care empower you to live a full life.

Girl with a Cane Asks Important Questions

2013-04-04T07:09:00.002-07:00

I read many disability related blogs. I am particularly drawn to blogs from different countries. One blog I read on a regular basis is Girl with the Cane written by Canadian Sarah Levis, a freelance writer, who has a vascular condition in her brain called an arteriovenous malformation. Levis often writes about disability issues in Canada and the United States. Today I read her latest post "Why Do Mike Rice and his Basketball Team Matter More than Disabled People". See: http://www.girlwiththecane.com/mike-rice/

For those not interested in college basketball, Mike Rice was fired as head coach of the Rutgers University basketball team. Video of Rice berating his players verbally and physically went viral. In the last 48 hours it has been hard to avoid this story--think total media saturation. Levis asks a very interesting question: "why do these stories get so much coverage and generate so much outrage"? Levis contrasts the media saturation about Rice with disability related stories that garner scant attention. She mentions the Judge Rotenberg Center where electric shock was used to discipline children which was declared torture by the UN; restraint and seclusion in secondary schools; the wide spread abuse found in NY State group homes. Levis pointedly asks NJ Governor Chris Christie why he has issued a statement about Rice but failed to attend the Joint Legislative Hearing on the closing of two institutions in NJ.

I share Levis frustration. I too wonder why stories about disability are rarely deemed news worthy. I also wonder why the few stories that do hit the news are framed in a way that reduces disability to antiquated stereotypes. The mainstream media excels at what many people with a disability identify as inspiration porn. Think Oscar Pistorius, the fastest man with no legs or Christopher Reeve whose life concerned one thing--cure for spinal cord injury. These men produced awesome visuals the media sucks up like nectar of the gods. People who know nothing about disability are inspired and brought to tears. Misleading leaps to the forefront of my mind. Disability is not well represented by men like Pistorius and Reeve.

Levis post reminded of a book I loved--The Short Bus by Jonathan Mooney. If you ever want to prompt a strong reaction among a group of people with a disability just bring up the topic of the short bus. Loud groans will be heard and bitter complaints. The short bus came into being in 1975 via the Individual with Disabilities Education Act (IDEA). The intent was good--children with disabilities had the right to an education, a first in American history. However, IDEA made no mention of how to get students with disabilities to and from school. Enter the short bus or as I prefer to call it segregated transportation. The short bus quickly became the symbol of special education and served a specific social function. Mooney wrote:

Our myth of who we are, who we should be, is actually created by categorizing people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are--not normal, not whole--a negation that calls into being its opposite: the normal. The normal looms over all our lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we... The short bus police that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us.

The short bus is still widely utilized. Thus it is no wonder disability is badly misunderstood among members of the media. We teach children from their initial entry into the educational system that the segregation of people with a disability is the norm. We have special buses and special education. We have special resource rooms. The message is clear: we are different, inferior. We are not worthy as Levis stated. We are not important, our civil rights are different. Given this important issues related to disability will continue to be ignored by the mainstream media. While this is undoubtedly a gloomy assessment I am hopeful social media has the power to change the social situation of people with a disability. There is a vibrant online community of disability related bloggers. There are Facebook pages dedicated to disability rights. Disability studies programs exist on university campuses. The wall of exclusion is being undermined and I hope to see it reduced to rubble in my life time. A guy has gotta hope, eh.

Inside Every Cripple a Non Disabled Person is Trying to Get Out

2013-04-03T07:14:00.001-07:00

I am having a good morning. The comments on my 500th post and by extension on Facebook have cheered me up. There are other people fighting the good fight. There are people who get how deadly ableism is, that is our ingrained bias against people with a disability. The issue for is why. Why do the vast majority of Americans have no clue what ableism mean? Why do people fail to equate disability rights with civil rights? Why are people resistant to go against the grain and question entrenched beliefs that make no sense? More specifically, why do health care professionals take such a dim view of life with a disability? In part, people with a disability are the symbolic representation of the limits of medical science. Health care professionals, public schools, and a host of other institutions do not know how to react when people with a disability thrive. We are not following our prescribed roles as tragic failures. Complicating matters further is fear--people with a disability are feared. Thus at a practical and symbolic level people with a disability call into question the utility of science and technology. How does this play out in the real world? In the case of spinal cord injury people without a disability gush over impractical and essentially worthless technology such as the exoskeleton. Much time is wasted encouraging newly paralyzed men and women to learn how to "walk". This is problematic. Symbolically, the use of a exoskeleton sends the message walking is good using a wheelchair is bad. Instead of pushing a newly paralyzed person to walk and investigate stem cell research I would argue figuring out how to manage one's bladder and bowels is far more important.

Culturally, technology reigns supreme and the hard work it takes for a person with a disability to navigate the world is not valued. Daniel Callahan maintains that we have created a "beast". That is technology has replaced care; what was once the bedrock of the medical sciences. This directly affects people with a disability because we are perceived as failures. Technology we revere did not cure us. This is a personal tragedy. Note the word personal. The idea disability is a uniquely individual experience permits and empowers ableism. This cultural assumption enables a host of social violations to occur because people with a disability are not a unique and distinct minority group. People with a disability are losers. Worse yet, if people with a disability really tried hard enough, think Christopher Reeve, they would spend their time overcoming their disability. This thought crossed my mind when I was reading about Marshal Sahlins, an eminent anthropologist, who resigned from the National Academy of Science in protest over the NAS election of Napoleon Chagnon. This has generated a heated debate within anthropology. I reread an interview with Sahlins in Dissent and was struck by the following quote:

The premise of American overseas aggression, according to Donald Rumsfeld and others, is something like the line in the movie Full Metal Jacket: “inside every gook there is an American trying to get out.” All we have to do to liberate this innately freedom-loving, self-interested, democracy-needing, capitalist-in-waiting is to rid him of the oppressive, evil-minded regime holding him down—by force if necessary. That is, Chagnon’s view of self-aggrandizing human nature is the sociobiological equivalent of the neocon premise of the virtues of American imperialism: making the world safe for self-interest. It is the same native Western ideology of the innate character of mankind. A huge ethnocentric and egocentric philosophy of human nature underlies the double imperialism of our sociobiological science and our global militarism.

It does not require a stretch of the imagination to replace "inside every gook" with "inside every disabled person" there is an able bodied American trying to get out. I would argue we need to ask an entirely different set of questions. This is something Jackie Leech Scully has proposed in her book Disability Bioethics. Deaf for almost thirty years, Scully wrote that no person had ever asked her "what is it like to hear as you do"" Instead, people have asked me "How much can you hear"? Similarly, people have asked me "How long have you been paralyzed"? instead of "What does it feel like to be paralyzed"? These questions are profoundly different. One is asking about the experience of deafness or paralysis the other sets one up to fail; the standard or norm is created by the questioner and assumes a terrible flaw exists. The impairment is the start and end of the narrative. The disability is firmly tied to an individual. In pushing people to ask a totally different set of questions it is my hope people will come to a fundamental conclusion--disability is normal, it is an integral part of the life cycle and human history. What was once a singularly uniques story becomes a social problem that deserves careful consideration.

The 500th Post

2013-04-02T14:30:00.001-07:00

The past two weeks I have witnessed a veritable attack on people with a disability. First, Chana Joffee-Walt launched a broad based attack on social security disability benefits. She claimed massive fraud is taking place. Worse yet, the number of people being added to social security disability is sky rocketing. The implied message is hardly subtle: disability is a scam. If people really wanted to work they would suck it up like the rest of us. Second, Iraq war veteran Tomas Young has announced his intention to die by starving and dehydrating himself to death this month. Young has a veritable cheering squad lauding his decision. Phil Donohue and Chris Hedges lead this squad. Third, Robert Ethan Saylor, a man with Down Syndrome, refused to leave a movie theatre and security restrained him. A few minutes afterwards Saylor was dead. A grand jury determined no crime was committed by the men that restrained him. Fourth, in Vermont Amanda Baggs a noted disability activist, is in the hospital. Baggs has Autism and does not communicate with speech. Instead, she relies on writing as a means of communication. She has been strongly advised to consider alternative treatment--that is death over the insertion of a feeding tube.

The incidents above are but a small slice of what I believe is a cultural backlash against the civil rights of people with a disability. This backlash and spate of anti disability rhetoric is taking place in a void of gross misunderstanding and ignorance. Two decades after the ADA was enacted the vast majority of people in America do not have a clue that disability is a social malady. Disability has never been nor will it ever be about a given physical deficit or any single individual. Disability is a complex social construct. I fear people will never "get" disability because it is impossible to reduce disability to a sound bite or tweet. To say I am frustrated is an understatement. I am weary of being the educator. I am weary that every where I go I am confronted with social and architectural barriers. I am weary of hassles checking into hotels. I am weary of continually being forced to explain my civil rights. I am weary of asserting life with a disability is valuable to me and all those I know with a disability. I am weary of the endless debate over assisted suicide legislation. I am weary of the cultural logic that one is better off dead than disabled. So please forgive me that after reading Rosemarie Garland-Thomsen article "The Cultural Logic of Euthanasia: Sad Fancyings in Herman Melville's Bartleby" published in American Literature I am decidedly unimpressed.

I should be impressed. Garland-Thomsen is a name scholar in disability studies. American Literature is a prominent peer reviewed journal. The subject matter and analysis is academically rigorous and well written. The essay is bookended by an interesting discussion of Christopher Reeve and Roosevelt Dawson who was euthanized by Jack Kevorkian. So why am I unimpressed and in fact disillusioned? One passage stood out and profoundly depressed me.

The cultural logic of euthanasia--manifest from Kevorkian's vigilante euthanasia to routine selective abortion of disabled fetuses--is a modern ideology that aims to to pragmatically eliminate the unfit, decisively preempt supposed suffering, and progressively perfect human-kind. I am not arguing that this logic drives malevolent oppressors to victimize innocents but, rather, that this set of assumptions is internalized and institutionalized in practices and attitudes that structure the choices--the preferences--of us all.

This is a lovely passage that let's people off the hook. If I have learned one thing since 2006 when I turned my full attention to disability right and bioethics it is that bigots abound. Well educated bigots exist in the form of physicians, lawyers, businessmen and women, elected officials, judges, school administrators, etc. None of these people consider themselves to be bigots and Garland-Thomsen is giving them an out. It is not me one could cry it is the system or institutional policy. The passage above highlights the degree to which disability based activism is totally divorced from disability studies. For Garland-Thomsen disability is an intellectual concern and part of her academic career. This is not a critique of her work as she is an important scholar. Instead, her work symbolizes something that has consistently bothered me--the majority of disability studies scholars in my opinion consider disability based activism to be tawdry. The irony here is that disability studies emerged as part of the disability rights movement. I bemoan the loss of scholars like Paul Longmore or an activist lawyer like Harriet McBryde Johnson who both skillfully straddled disability studies and disability activism.

At the end of Garland-Thomsen's essay she quotes John Kelly, a long time disability rights activist who is currently on the Board of Not Dead Yet. In a letter to the Boston Globe circa 1998 Kelly bemoaned the death of Dawson who could have led a rich and full life. Kelly wondered why no one told Dawson life was worth living and that he could do many of the things he once did. Garland-Thomsen wrote "The answer, in short, is that Dawson was not told because most of us don't know 'this' either". Here is where Garland-Thomsen succeeds as a disability studies scholar and fails as an activist. And here I will openly acknowledge I am not being totally fair; Garland-Thomsen has never claimed to be an activist. The activist and scholar in me is outraged by "malevolent oppressors" to use her words. These "malevolent oppressors" take many forms and I wonder just how many lives have been lost. Oppression exists. I have experienced it. Tomas Young has. Amanda Baggs is battling oppressors as I write these words. Put in this context, intellectually challenging discussions of Milton's Bartleby and how they relate to Reeve and Dawson fall flat for me. Such analyses are important--I get that. A rigorous disability studies perspective in academia is important. But I for one cannot divorce my academic work from the gritty reality of every day life. In fact I cannot fathom how any disability studies scholar could separate activism and scholarship.

The divide between a scholar such as Garland-Thomsen and myself has been on my mind throughout the day. I have wondered and worried about Amanda Baggs. I was in a comparable situation in the Fall of 2010. A hospitalist suggested my life was not worth living. I rejected this idea as has Amanda Baggs who wrote with a controlled fury about the physicians she has been exposed to and the hospital where she sought treatment:

Culture of death here? Disability hate? Yes. This is the same place that tried to refuse me entry because I didn’t have a 24-hour staffer willing to stay with me from my DD services agency. That says it all. And they think its better sometimes when people die. Healthcare professionals don’t admit their bias but they’ve found they think our quality of life is terrible at the same Time we think ours is fine. It influences them. This is why I got into disability activism. I somehow never thought it would be me again, in the position of being treated as better to let me keep aspirating than try a G-J feeding tube. They’ve talked to me what a huge choice it is. I made the choice easily months ago. They been talking feeding tubes since I was first diagnosed. No surprise here. They tell me it might not work. They tell me consider alternatives. The alternative right now is pneumonia and death. They tell me all this bullshit. Underneath the bullshit is ideas they aren’t willing to admit they have. Ideas like: No quality of life. Better off dead. Let things take their course. No matter what we do she’ll get sicker and sicker and die. So might as well do nothing. Pretend it’s not happening. Pretend the ground glass appearance of my cat scan is just a sensation I imagined. Pretend pretend pretend.

See more at: http://youneedacat.tumblr.com/post/46772164821/so-i-get-woken-up-at-seven-someting-innthenmorning

Has society really stooped this low? No wonder people with a disability fear hospitalization. When "alternatives" such as death are suggested in the absence of a terminal illness I cannot help but be outraged. I for one am not going to my book shelf and pull out a book by Milton. Instead I will fight the oppressors like many others. One last point: this is my 500th blog post. I never thought I would write so many posts. I can happily state writing here has been a wonderful experience. I love the immediacy of blogging and the community of people who fight for disability rights.

The Spin Doctors on Tomas Young

2013-03-21T13:44:00.002-07:00

Tomas Young is very much in the news. His last Letter is making the rounds on the internet. Stephen Kuusisto and just a few minutes ago Stephen Drake at Not Dead Yet have posted about Tomas Young. Like me, Kuusisto and Drake are deeply upset at how the mainstream media are spinning the story. Absent are references to assisted suicide. In its place Young is now described as being "in hospice care" or a "dying Iraq veteran". No mention is made of VSED. Instead Matt Campbell in the Kansas City Star writes that Young "will soon refuse nourishment water and life extending medication". This is a very benign way of telling his readers Young will dehydrate and starve himself to death. Democracy Now has joined the band wagon. In an exclusive interview with "dying Iraq war veteran" Juan Gonzalez writes "Tomas Young's tragedy goes back to 2011". Democracy Now reports Young will "end his life by discontinuing his nourishment which comes in the form of liquid through a feeding tube". It appears to me the media has decided that Young is a "dying Iraq war veteran" fed threw a tube. His story is a tragedy. Phil Donahue, director of Body of War, understands why Young wants to die as do others who are close to him. Young in Donahue's estimation shows an "unusual act of moral courage". I think not. I think Young's experience in the army, the decision to go to war, and the bungling of his care on the part of the Veterans Association is the real tragedy, a tragedy that is socially unacceptable. Equally unacceptable is those that support Young's decision to die. Thus I find much to object to in stories about Young. For instance Donahue states "he's not only a paraplegic, he can't hold silverware. Tomas has to be fed. When he and Claudia were able to go out, they would go to a restaurant, and they'd find--she would find a corner where she could feed him without being stared at".

I am stunned at how quickly Young's humanity has been reduced by a host of powerful forces that support his death. Young wants his death to have meaning. I would suggest Young try to make his life worth meaning. Living with a disability takes guts or to use Donahue's words unusual moral courage. It takes steely resolve to reject stereotypes associated with disability. It takes resolve to navigate the world that is not designed for people that have atypical bodies. It takes resolve to fight for a taxi in NYC when the Mayor tells the tabloids it is too dangerous for a person using a wheelchair to hail a cab in the street. It takes resolve to go to a museum and be accosted by guards who tell you guide dogs are not permitted. It takes resolve to go to a meeting and know no one wants you to be present because the first line item cut from the budget is equal access. It takes resolve to battle with airlines that begrudgingly comply with the law. It takes resolve to step in front of a bus because the driver does not want to us the lift. It takes resolve not to scream in rage when a stranger tells you that he would prefer to be dead than paralyzed. It takes resolve to file a formal complaint when refused entry to a restaurant because of a no wheelchair policy. This is the sort of courage and resolve we need. We do not need to add to the death toll associated with the war in Iraq. And if I could say one thing to Young it might start with don't give that bastard Bush the satisfaction of dying. Be a thorn in his side now and forever.

Huffington Post Misleading Reporting on Thomas Young

2013-03-21T08:05:00.003-07:00

The Huffington Post published a story yesterday entitled "Thomas Young, Dying Iraq Veteran Pens Last Letter To Bush, Cheney on War's 10th Anniversary". Simply put, the article is dreadful and I will not provide a link. The Huffington Post article is superficial, devoid of analysis. It is spin at its best. I suspect similar articles will abound in the mainstream press in the weeks to come. The dye has been cost, a formula has created. The spin doctors are hard at work. Proponents of assisted suicide will characterize Young as heroic and brave. Groups such as Compassion and Choices will argue in the absence of assisted suicide legislation the best we can do to help men like Young who is clearly suffering is VSED. Liberal anti war activists will use Young's death to illustrate that war is hell and altruistic men like Young needlessly die. In short, Young has a veritable cheering squad behind him. He is a political pawn with much larger social forces packaging a story to meet their ends.

One thing is utterly absent from mainstream news stories: a disability rights perspective. No mention is made of the inherent problems associated with VSED or how the Veterans Administration has failed Young. These are meaty issues worth discussing in detail. But this is exactly how the hype surrounding Young is not being discussed. The Huffington Post article will not let facts get in the way of good melodrama and professionally spins the facts. In absence of analysis the article states that after Young's spinal cord injury "he would suffer a number of medical setbacks that allowed him to survive only with the help of extensive medical procedures and the care of his wife, Claudia". I do not dispute the fact Young has had serious complications associated with spinal cord injuries. I know all too well what he has experienced because I have lived with paralysis for over 35 years. I also know Young's struggles with paralysis is not unique nor are the serious complications he has experienced. Young fits into a small class of people: those with a spinal cord injury that express a desire to die. Precious few commit suicide. The vast majority of people after a period of time adapt. They lead ordinary lives. They get married, have children, get divorced, and move on with life. This is not a story that will sell newspapers or end war, or get assisted suicide legislation passed into law.

The stories I have read about Young identify him as a "dying Iraq war veteran". This is extremely misleading.
Young is dying because he has decided to end his life. He is not terminally ill. He is simply disabled. He is going to commit suicide. And that is exactly what VSED is--a legal way of committing suicide. The unspoken cultural subtext reveals a deeply ingrained bias and destructive stereotype: one is better off dead than disabled. The more severe the disability the more logical it is to express a desire to die. The skeptic could accuse me of creating my own spin. I am afterall opposed to assisted suicide legislation and on the Board of Not Dead Yet. So yes I do indeed have an ax to grind; however my ax is not wielded to end other people's lives. My views are grounded in the gritty reality of every day life as a paralyzed man. My reality and Young's is based on a social failure, that is our bodies, our very existence, is not valued. It is rare a day goes by when I am not reminded of my stigmatized identity. The social abuse I experience ranges wildly from minor inconvenience to gross violations of my civil rights. On any given day I could encounter a blocked curb cut or similar architectural barrier. I also could encounter people who insist and "helping" me or a stranger telling me that they would prefer to be dead than use a wheelchair. I could be refused entry into a restaurant or store.

The point I am trying to get across is that without the appropriate social supports I truly understand why a person such as Young could conclude death is preferable to life with a disability. Living with paralysis can be hard. Just the other day I looked down at my stomach and experienced severe and debilitating rolling spasms. I could not eat, drink or work. This lasted for many hours and suddenly disappeared. As I looked down at my stomach I thought of Young. Regardless of the severity of one's physical deficits the fact remains our society prefers to rely on an antiquated understanding of disability. Disability is first and foremost bad. Disability is feared. The ADA is not civil rights legislation but an onerous burden imposed by the federal government. Until the antiquated and destructive stereotypes associated with disability are rejected people like Young will die. Young's bodily deficits are not at fault. Rather it is the failure of our elected political leaders, the Veterans Administration and our health care system. All these entities failed Young. When I think of Young as I have often done in the last few days I hope someone from within the disability rights community can reach out to him. I have tried and failed to find his contact information. I desperately want to tell him about how wonderful and wildly unpredictable life is. One can live with paralysis, pain, and a degree of dependence on others. It is a different life for sure one based on situated autonomy. My life and Young's has value. This is the story I want to read about.

Thomas Young: The Last Letter

2013-03-19T16:45:00.003-07:00

Truthdig.com has posted Thomas Young's "The Last Letter" addressed to former President Bush and Dick Cheney. Here is the link: http://www.truthdig.com/dig/item/the_last_letter_20130318/ Dated March 18, the 10th Anniversary of the Iraq War, Young is filled with melancholy rage. Young clearly feels deceived and used. He characterizes the Iraq War as the "largest single strategic blunder in U.S. history". He rails against Bush and Cheney writing: "I have, like many other disabled veterans, suffered from the inadequate and often inept care provided by the Veterans Administration. I have, like many other disabled veterans, come to realize that our mental and physical wounds are of no interest to you, perhaps of no interest to any politician. We were used. We were betrayed. And we have been abandoned". This sentence is heart breaking as is most of Young's letter. But I cannot help but feel there are larger forces at work. Young has been out of the news since 2007 and now weeks before he will kill himself he has suddenly re-emerged. Let's be blunt: VSED sounds much better than suicide, assisted suicide, euthanasia or hospice care. VSED is a benign acronym and has been at the forefront of Compassion and Choices campaign "Peace at Life's End: Anywhere". It seems logical to assume Compassion and Choices professional campaign to promote VSED has purposely clouded issues at the end of life. It is what I would do if I wanted to insure assisted suicide legislation was passed into law. Confuse people for we are a society that does not discuss much less accept death. This is to our detriment--especially for vulnerable populations such as the elderly terminally ill and disabled. Young sadly highlights this confusion. Is he committing suicide? If I argued this those caring for Thomas as part of hospice would be deeply insulted. How assisted suicide? Do not go there, that is not legal and any person assisting him could be subject to prosecution.

In the social vortex Young has found himself in it seems from the comfort of my home he is being supported by the anti-war movement and I sincerely doubt it is a coincidence Young has emerged into our collective conscience on the 10th anniversary of the Iraq War. I also do not think it is a coincidence that in the article by Chris Hedges Young referred to suicide and in his "Last Letter" states he is in hospice care. Remember Young was quoted saying "I had been toying with the idea of suicide for a long time" an that "instead of committing conventional suicide and I am out of the picture, people have a way to stop by or call and say their goodbyes". To me Young is clear: he is committing suicide in a nonconventional way. I find this objectionable for many reasons foremost among them is who, if anyone, has tried to reach out to him and point out he can lead a rich and full life.

Young's "Last Letter" was followed by an essay by Ron Kovic the well-known Vietnam anti war author. I found his essay, The Forgotten Wounded of Iraq" moving but fell far short of directly supporting Young. That is arguing life is worth living. See http://www.truthdig.com/dig/item/forgotten_wounded_20060117/
Kovic wrote about disabled Iraq veterans and speculated:

What will it be like for them when one morning they suddenly find themselves naked sitting before that mirror in their room and must come face to face with their injury? I want to reach out to them. I want them to know that I’ve been there too. I want to just sit with them in their room and tell them that they must not give up. They must try to be patient, try to just get through each day, each morning, each afternoon any way they can. That no matter how impossible and frustrating it may seem, how painful, regardless of the anxiety attacks and nightmares and thoughts of suicide, they must not quit. Somewhere out there there will be a turning point, somewhere through this all they will find a reason to keep on living.

It is my sincere hope Young experiences that turning point Kovic writes about. A time when he realizes life even one filled with pain and complications associated with spinal cord injury is worth living.

More On Shannon Larratt

2013-03-17T07:02:00.001-07:00

I have read two outstanding tributes about the life of Shannon Larrattt. See Marisa Kakoulas at Needled and Sins: http://www.needlesandsins.com/2013/03/rip-shannon-larratt-1973-2013.html. She wrote: In discussing Shannon as the ultimate cheerleader of people's adornment and body morphing, my friend Julien said it best, "He trusted people to do right by themselves." Shannon had faith in people, especially people for whom society treated with little respect. He understood it because he lived it. Even in his last post, he discusses how he was not given the proper pain management for his chronic illness because doctors looked at him and thought he was just a drug addict. His life was dedicated to changing this prejudice and offering support to all of us who have faced so much discrimination because of the way we look.

Shawn Porter at Sacred Debris wrote a moving tribute about Larratt entitled Stay Calm: Don't Panic. I found Porter's words fascinating for Larratt was and always did push the boundaries of body art and modification while in recent years Porter has become more conservative. See: https://sacreddebris.wordpress.com/2013/03/16/stay-calm-remembering-shannon-larratt/

Over the years my friendship with Shannon evolved. We didn’t always agree; far from it. As I got older my views became increasingly conservative and his progressively more radical. We’d butt heads privately and publicly about the safety of a procedure or the ethics of a practitioner, but we’d always respect the other’s opinion and by the end of the argument we’d be smiling. We went through good periods and bad together, the balance shifting depending on the year, but through it all, he remained someone who’s impact on my life is so thorough that it’s impossible to imagine my life without him.

I know the last two posts have been a bit of a departure from my usual focus on disability rights but there are obvious parallels between the bias modified people encounter and the bias people with a disability encounter. I urge those who have never heard of Larratt to visit BME.

Shannon Larratt, Founder of BME Commits Suicide

2013-03-16T14:44:00.004-07:00

Shannon Larratt, founder of BME, committed suicide. His last statement can be read here: http://pastebin.com/m8t6mb7W I never met Larratt but there is no question he influenced my thinking and was a critically important figure in the field of body art and modification. BME was founded in 1994 and was among the first sites on the internet. Larratt's first post stated: "Is anyone out there interested in starting an e-zine dedicated to piercing and body art? It's a project I would like to get started". Within months BME was one of the most popular sites on the internet and is now one of the oldest sites. BME has experienced great change since it was founded and has been subject of cursory academic scrutiny. I am sure in the years to come Larratt and BME will be the subject of serious academic attention. In fact I would go as far as to maintain without Larratt and BME the popularity of tattooing and body art in general would not be what is today without his hard work. Larratt through BME established a vibrant on line community of people in much the same way people with a disability have done so via the world of blogging. Larratt wrote:

For a long time the body modification community, while deeply isolated from the mainstream in a way that may be hard for younger people today to really relate to, had a wonderful sense of solidarity — a sense that we’re all in this together, a sense of all supporting each other’s personal paths, from the subtle to the extreme — but now it feels like there’s infighting and intra-community prejudice. We once all worked together to better ourselves and share our experiences — for example the creation of BME’s various knowledge-bases (birthed from the earlier Usenet FAQs) that brought the world level-headed accurate information on modifications and their risks, as well as the thousands of detailed “experiences” that people wrote — whereas now it seems like the majority of modification media is just about posting pictures, devoid of any real stories or information, reducing them to visual pornography for people to “cheer and jeer” at. All of these changes have slowly eaten away at the character of the body modification community and changed it in subtle and unpleasant ways.

In reading Larratt's writings over the last few years I knew his health was not good. However, his suicide comes as a shock in part because he deeply loved his daughter Caitlin. For him to end his life and not be a part of her life must have been exceedingly difficult. In his words:

The last three or four years have been a daily struggle, beginning with a multi-layered pain made up of a never-ending, never-lulling dull throbbing from the core of my muscles beginning in my legs and eventually spreading out over my entire body, coupled with a constant burning sensation in my skin that made it impossible for me to feel anyone’s touch without it being a bitter agony. I held out hope that a treatment for the pain if not a cure could be found, but every difficult diagnostic step only confirmed the degenerative condition replacing healthy tissue with junk calcium was incurable, and every new attempt to treat the pain only emphasized that it was inescapable. Not only that, but every day it grew. As impossibly painful every day of this process has been, it has been made more difficult by knowing that the next day will always be worse, and every day that goes by I have less defences against a more powerful foe. There was a time that I believed that I could cope with the unending pain, but then the pain’s root began catching up to me as less and less healthy muscle tissue remained. Every day I could walk a little less. Carry a little less. Use my hands a little less. Bit by bit it chipped away at me. As I write this even standing up is indescribably painful, even sitting up, and the idea of walking nightmarish, although I have done my best to hide it and keep it buried.

I wish I could have exposed Larratt to the disability rights community. Perhaps it would have made a difference. Perhaps he would also have better been able to assert himself as he questioned the quality of the medical care he received. On this front, I am sure he is correct. As a modified man he must have experienced significant discrimination.

I have mixed feelings about the medical treatment that I’ve received. From everything I have seen and understand, I don’t believe that anything could have been done to fundamentally “cure” me (although I suspect that cures for these sorts of genetic conditions will come in a decade or two — I wish I could have made it that long). This condition is what it is, and it was probably fated for me the day I was born... I believe that there were fundamental shortcomings in the way both my condition and my pain were treated, and that the last few years could have been much more pleasant if the pain had been more aggressively managed. I believe this was in part because of the prejudice of multiple doctors due to my appearance causing them to stereotype me as drug seeking (and the simple reality is that it can be hard to tell, and we are so cruel as to prefer to “punish” the sick than to “reward” the mentally ill). I wish there was some way to make those doctors understand the cruelty they enacted. A patient should have the right to a pain free life, even if that comes with some risk.

This passage is heart breaking as is his championship of assisted suicide in Canada. Obviously I disagree but have always felt I learn far more from those I disagree with than with those I share similar views with. Today is not the day to disagree. Today is a day to mourn an important man whose death will touch people such as myself that knew Larratt by his works alone. To his family I offer my thoughts and good wishes at a terrible time in their life. I hope their grief will not be overwhelming. Tonight I will pull out I am the Strength of Art, Larratt's first venture into the "real world" of publishing and pour myself a stif drink in his honor. Larratt made only 500 copies of this book and it was "hand assembled by either Caitlin or I while sitting in my back yard so not only are holding what I believe is a piece of art, but a piece of history as well (maybe in ten years you can sell it on ebay". Rest in piece Shannon Larratt.

Thomas Young and Suicide: All the Wrong Questions Asked

2013-03-13T15:38:00.000-07:00

I have not thought about Thomas Young in quite some time. He was featured in the 2007 documentary Body of War directed by Phil Donahue and Ellen Spiro. Body of War was a critically acclaimed film that was deemed "emotionally ravaging" and a "stunning achievement". I found the film to be morbidly depressing, a perfect dissection of how the media can manipulate young altruistic people interested in making an important contribution to society. Thomas Young was one of many men in the aftermath of the attacks of September 11 that joined the military to make the world a safer place. He accepted without thought that America was going to fight the good fight, the "War on Terror". Young sincerely wanted to search and destroy those responsible, the so called "evil doers" to use Bush's words. In April 2004, Young's fifth day in Iraq, the reality of war was made all too real. Young was was shot and paralyzed on what he described to be a poorly planned mission. Body of War effectively juxtaposed Young's struggle coping with paralysis against the propaganda used by the Bush administration to justify going to war.

Young I had assumed went on to have a good life. This did not happen apparently. Based on an article I read by Chris Hedges http://www.truthdig.com/report/item/the_crucifixion_of_tomas_young_20130310/ Young has struggled mightily and has entered into hospice care to die even though he is not terminally ill. Since his injury, Young has taken a laundry list of medications (carbamazepine, coumadin, tizanidine, gabapentin, bupropion, omeprazole, and morphine were mentioned in Body of War). According to Hedges in 2008 Young had a blood clot in his arm, was given blood thinners and briefly hospitalized. A month later the clot migrated to his lung. He experienced a major pulmonary embolism and lapsed into a coma. When he emerged from the coma his speech was slurred and he had lost the use of his upper body as well as his short term memory. Young subsequently started having severe abdominal pain and in desperation had his colon removed and now uses a colostomy bag. This is what I would characterize as a clinical cascade. Without question Young has suffered.

Hedges is a well respected journalist who with a team of reporters for the New York Times won a Pulitzer prize for the paper's coverage of global terrorism. His article cannot be easily dismissed. Again, I share Hedge's staunch opposition to war but not the rhetoric he uses in his story about Young. Here is a particularly galling paragraph:

Young will die for our sins. He will die for a war that should never have been fought. He will die for the lies of politicians. He will die for war profiteers. He will die for the careers of generals. He will die for a cheerleader press. He will die for a complacent public that made war possible. He bore all this upon his body. He was crucified. And there are hundreds of thousands of other crucified bodies like his in Baghdad and Kandahar and Peshawar and Walter Reed medical center. Mangled bodies and corpses, broken dreams, unending grief, betrayal, corporate profit, these are the true products of war. Tomas Young is the face of war they do not want you to see.

Hedges does not give a damn about Young. He is not only using Young to push his opposition to war but also using an overwhelming and antiquated perception of disability. Hedges article is peppered with ableist phrases like "his legs now useless" and once a "voracious reader but can no longer turn the pages of a book" and finally the following assessment of Young:

the war, the wound, the paralysis, the wheelchair, the anti-war demonstrations, the wife who left him and the one who didn’t, the embolism, the loss of motor control, the slurred speech, the colostomy, the IV line for narcotics implanted in his chest, the open bed sores that expose his bones, the despair—the crushing despair—the decision to die, have come down to a girl. Aleksus, his only niece. She will not remember her uncle. But he lies in his dimly lit room, painkillers flowing into his broken body, and he thinks of her. He does not know exactly when he will die. But it must be before her second birthday, in June. He will not mar that day with his death.

Hedges accepts the fact Young wants to die without question. He does not ask why Young has "open bed sores that expose his bones", a description of severe stage four wounds that are preventable. He does not question why Young takes so many powerful medications. He does not question why many other people with similarly difficult medical complications lead ordinary and fulfilling lives. He does not question why Young had a colostomy. He does not question why Young has an IV line for narcotics implanted in his chest. He does not at any point suggest Young's life is worth living. He does not ask if Young has tried to connect with other people with a disability. He does not question why a man who is not terminally ill can enter into hospice care and die. He does not question how difficult it is to starve and dehydrate one's self death.

My reaction to the following quote is dramatically different than Hedges:

I had been toying with the idea of suicide for a long time because I had become helpless... I couldn’t dress myself. People have to help me with the most rudimentary of things. I decided I did not want to go through life like that anymore. The pain, the frustration...I felt at the end of my rope... I made the decision to go on hospice care, to stop feeding and fade away. This way, instead of committing the conventional suicide and I am out of the picture, people have a way to stop by or call and say their goodbyes. I felt this was a fairer way to treat people than to just go out with a note. After the anoxic brain injury in 2008. I lost a lot of dexterity and strength in my upper body. So I wouldn’t be able to shoot myself or even open the pill bottle to give myself an overdose. The only way I could think of doing it was to have Claudia open the pill bottle for me, but I didn’t want her implicated.

I thought of my mother when I read Young's words. I drifted back in time to those first rough years of paralysis. There were times I was morose, truly miserable. I forget what I said but I vividly remember I enraged my mother. I have no doubt I expressed the worst form of self pity. I will forever recall the look of fury on her face as she literally hissed at me something to the affect "Damn it, stop. Your brain works perfectly fine and with that ability you will lead a good life". Young is not dying for the reasons Hedges maintains. Young is dying because disability is a social malady. I am not dismissing the many difficult aspects of his life and disability. They are very real. Like Young I have experienced searing pain, depression, social isolation, and blatant bigotry. I am willing to admit even today there are days I do not leave my house because I simply cannot cope with the inevitable screwed up social interactions. But like millions of other people with a profound disability I soldier on (sorry for the bad pun).

What disturbs me the most about Young's entry into hospice care is the larger implications. He is not the first nor will he be the last paralyzed person who will choose to die. I am appalled by Young's decision. I was equally appalled by Christina Symanski's death. I cannot fathom how we as a society can condone and enable a paralyzed person who is not terminally ill to enter into hospice care. I cannot envision a bipedal person who expresses a desire to die being able to end their lives as Symanski did and Young desires. In my opinion Symanski and Young were used. Symanski was used by the cure industry in part because she made a Faustian bargain to wait a few years until a cure was discovered. Young was used by those opposed to the war and a society that is unwilling to provide adequate social supports.

More generally Symanski and Young represent a disturbing trend for people who experience a traumatic spinal cord injury. In the olden days when I was paralyzed in 1978 modern rehabilitation was being established. Newly minted paralyzed people were given time to adjust to paralysis. It was not unusual for people to receive months of rehabilitation. This was not strictly necessary medically but the long lasting results were beneficial in the extreme. This enabled a person to cope with the important though mundane physical changes in the body. For instance it took months for me adapt to the changes in how I pissed and pooped. I learned how to adapt by ignoring all medical advice and listening to my paralyzed peers. This does not happen today. People whiz through rehabilitation in mere weeks. Precious time is wasted on cure industry research and propaganda. Worse yet people can be lead to believe a cure to spinal cord injury is in the immediate future--as within their life span. Thus people can put their life on hold and five to ten years post injury face a crisis situation. They are socially isolated, have not worked in years, receive inadequate social supports and are suddenly confronted with the idea I am and will always be paralyzed. In my estimation too many paralyzed people are not taught the practical skills needed to survive in a hostile social environment. Without any connection to the disability rights community people do not learn about the social model of disability or the long history of social oppression. People remain unaware of the Eugenics Movement, forced or coerced institutionalization, ugly laws and the long battle to pass civil rights legislation such as the ADA. People are unaware that it was not until 1975 that children with a disability were legally entitled to attend public schools. Without this knowledge it is all too easy to conclude one's life has no meaning. Young's despair is understandable. Understandable because he lacks the required knowledge base. Has he ever read about Ed Roberts who helped found the independent living movement? Has he been exposed to any figures in disability studies scholarship? Has he ever met another person with a comparable disability that manages to lead an active life? I am willing to bet the answer to these questions is no. And this is exactly why I consider disability to be first and foremost a social malady.

Lera Auerbach: The Blind

2013-03-02T11:36:00.000-08:00

Carefully read this "note" about The Blind by Lera Auerbach, a capella opera. The quote is from Auerbach's website: http://leraauerbach.com/content/compositions_catalogue_detail.php?id=681

At a lonely clearing in a wood, a group of blind people await the return of a priest who led them there in order to enable them to enjoy the last rays of the sun before the beginning of winter. Only the sound of the nearby sea can be heard. The longer they wait, the more restless the blind people become; in their desperation they realise that they are helpless and cannot move from their place. Their fear escalates to naked terror when they discover the corpse of the priest. The blind people form a circle round the dead man and begin to pray for forgiveness and salvation. Steps become perceptible during the prayer. The presence of something mysterious makes the blind people panic; they pray ever more fervently. In his mother’s arms, the small child, the only person in the group who can see, breaks out sobbing. What does the child see? Is it rescue, the rescue so ardently hoped for, or is it death?

This opera will be performed at Lincoln Center in June. It has already been performed in Moscow and Berlin. Auerbach is a major player in the music world. Apparently Auerbach read Maurice Maeterlinck 1890 one act play the Blind and believed it would make a great opera. As I understand Maeterlinck, he thought blindness was a metaphor for the human condition. That is life often leads us astray and powerful forces beyond our control dictate our lives. I am by no means a literary analyst but I do get that Maeterlinck was not writing about people who were blind but rather those who are disempowered. Symbolism I get. What I do not get is how Auerbach could have written the above words. It is 2013 not 1890. The play by Maeterlinck was important circa 1890 but is highly objectionable today. Let me correct myself: the words above are not objectionable they are offensive in the extreme. It is ableism run amuck.

What was Auerback thinking? In her words: “I love Maeterlinck. When I read ‘The Blind’ I thought to myself - this story is a perfect opera. Or anti-opera. And it needs to be done a-cappella. Since some of the characters are continuously praying or chanting - this provides a perfect structure for a chamber-music approach to balancing of the voices where some of the voices provide a constant harmonic base, while the others play more prominent voices.”

This is intellectual masturbation. The play rests upon the premise that the blind characters are utterly and completely helpless, dependent upon others. By extension blind people today are dependent retches. My friend Stephen Kuusisto wrote the following email when he learned the Blind would be performed at Lincoln Center.

The description of the opera on Lera Auerbach's website left me speechless, inasmuch as it employs nearly every conceivable "ableist" cliche about blindness one can employ--blindness is embedded in her précis with more cliches than any one person may creditably imagine. In fact the synopsis is so offensive I'm left with a dislocated mandible which I hope is a temporary condition as I'm at the MacDowell Colony for the Arts and there are no local dentists. How could Ms. Auerbach imagine that in 2013 blindness can still be used as a metaphor for lack of knowing or knowledgeability; powerlessness, spiritual failure, immobility, or worse, stand as a metonymic reduction for death itself? The description from her web site would, in fact, cause me to cry save that her prose is so louche and decadent one finally has to conclude this is a joke. Will Lincoln Center actually print this in the programs?

Lincoln Center will surely print Auerbach's bigoted note. Auerbach's opera will be fawned over (see Auerbach's website or Facebook page). However people like me who mix disability studies scholarship and activism are offended. Auerbach's words are so horrific I refuse to engage her or Lincoln Center. I very rarely refuse to engage the normate to use Garland-Thomsen's awkward word. Sometimes one must simply say no. The words are too wrong or the ideas too horrible to contemplate much less discuss. To engage is to provide legitimacy to the other. Therefore I refuse to debate Auerbach or a scholar such as Peter Singer. They have not earned my respect.

One final point: my experience with Lincoln Center has been consistently terrible. Lincoln Center, even after major renovations, is not particularly accessible. It has been and remains a hostile social and physical environment for people with disabilities to navigate. Lincoln Center is far from unique. Many such comparable institutions perceive disability with disdain. We do not want those pesky people who use wheelchairs in our lovely buildings. And guide dogs? No way. This is not the image Lincoln Center wants to cultivate. The closest I will come to the Blind is in a protest outside of Lincoln Center.

Disability Rights are Civil Rights

2013-02-24T11:02:00.000-08:00

Disability rights and civil rights are considered to be different. There is significant resistance when I equate disability rights with civil rights. The reaction to linking disability rights and civil rights is often emphatic--emphatically negative. In large part the reason why people do not consider disability rights a civil rights issue is that they have no exposure to people with a disability and the social model of disability. Disability for the public at large remains a physical problem--the impairment model of disability reigns supreme. Blind people advocate for themselves. Deaf people too. I am a member of the chrome police and selfishly advocate for wheelchair access. By logical extension the main problem a paralyzed man such as myself has is the fact I cannot walk. Nothing could be further from the truth. The least of my problems is the inability to walk. The major impediment I encounter is the social stigma associated with disability. My presence, indeed my existence, is not valued. Given this, the majority of people will balk when so called "reasonable accommodations" are required by law. Without a social mandate for inclusion the last 40 years of legislative initiatives designed to empower people with a disability will continue fail. For example, the ADA and inclusion of children with disabilities in schools will be considered an onerous burden forced upon local authorities by the federal government. Inclusion and access is not about civil rights but a needless economic burden imposed on schools. A perfect example of this line of thought was the recent U.S. Department of Education letter that stated extracurricular athletics are an important part of education and that schools must provide comparable athletic opportunities to students with disabilities. The letter was designed to help schools understand what their legal obligations were. When I read the letter signed by Seth M. Galanter Acting Assistant Secretary for Civil Rights I was convinced of one thing: it would be met with howls of protest and be ignored by the vast majority of schools.

The negative reaction to the U.S. Department of Justice letter was expected. In my experience, when disability issues come up at secondary schools and universities the reaction is rarely if ever positive. I cannot think of a single instance when I was at a meeting and there was universal support for a disability related issue. I have also learned not to make comparisons between disability rights and other minority civil rights--especially when it concerns race. This sort of comparison prompts a knee jerk response. "Utter bullshit" is said with force. Rolling of the eyes or walking out of the room are typical responses as well. What this response conveniently ignores is basic facts. For instance, the aforementioned letter was written by the U.S. Department of Education Office for Civil Rights. It was signed by Seth Galanter, Acting Assistant Secretary for Civil Rights. The Federal Government considers disability rights to be a civil rights issue. Let me state that sentence again: the Federal government considers disability rights to be a civil rights issues.

I find it hard to fathom why twenty plus years after the ADA was passed into law disability based bigotry abounds. Disability based bigotry has been on the forefront of my mind because I made the mistake of reading the comments to Jemele Hill's commentary on ESPN about Oscar Pistorius (she quoted me in her column). See link: http://espn.go.com/olympics/trackandfield/story/_/id/8971736/olympic-myth
Hill is a controversial figure at ESPN. A native of Detroit, Hill was hired by ESPN in 2006 as a national columnist. Prior to speaking with Hill I read a few of her columns and would venture to guess she was hired because she is a well qualified, well educated and articulate black woman who is not afraid to voice her opinion. I felt she would be receptive to a disability rights perspective and I was correct. I expected a strong reaction to her column. However the vitriol directed at her and by extension disability rights was a shock. I ignored about 80% of the nearly two-hundred comments about her column. The remaining 20% fit into two groups--race based bigotry and the refusal to reject Oscar Pistorius was inspiring (an example of inspiration porn." Here is a random sampling:

On inspiration:

If Pistorius had overcome his disability and become a garbage man it would have been an inspirational story.

Pistorius was not overhyped. There is no hype in the universe that would suffice the story of man with no legs competing in a sprint in the Olympics

You watched the performances and formed no opinion about courage, determination, and drive required to overcome his handicap? Nonsense.

Does Jemele really want to down play what Pistorius achieved & done to become a successful athlete (& yes also overcome his disability)?

On race:

Unbelievably she did choose a quote that in some round about way compared this situation to racism.

Comparing the plight od the disabled to that of black people. Completely pointless.

This is just a long line of racist comments that she has put into her articles.

Did she just throw in a quote that being African American to being disabled?

Hill lost me when she compared being black to being handicapped towards the end of the article.

I knew she was going to get race in there!

The article baffled me.

While I envy Hill's salary as a national columnist for ESPN I do not envy the harsh and bigoted remarks that accompany her writing. To receive such racist replies to my work would bother me to the point I could not write. On September 15, 2011 Hill wrote that "Why are you such a racist? I'm asked that every time I write a column about race. It baffles me". I feel equally baffled when people tell me "its always about you" meaning I am a self absorbed narcissist. The reality is it has never been about me. It is about the person who follows me and the hope they will not struggle with ingrained bias and a hostile reaction to their presence. To maintain bias exists but is not a major variable is grossly misleading. The same point was made by Hill and I would maintain is the primary reason she is labeled a racist by her detractors. Hill noted that:

To me, it's a copout when people admit that "racism is alive" or that it still exists in some form. It reduces racism into something abstract. It becomes a mythical idea, and this distances us from pushing ourselves to think about where racism does exist, how it exists, and whether its existence impacts how we think, feel and process.
All of us have been influenced by race. It doesn't make us bad people. Our country has a long, ugly history of racial division. Anyone who assumes that the unpleasant remnants of that history aren't still present in our culture and the way we think is being wonderfully naive. Yes, it would be a tremendous relief if every time race played a role in a situation, a blinking sign would flash, "HEY, EVERYBODY, THIS IS RACISM!" But that's not the way it works, and thinking that it should work that way marginalizes the issue... I don't write about race to create a stir, but rather to promote open and honest conversations.

The quote above by Hill is spot on. Substitute the word race or racism with ableism and its meaning remains equally pointed and correct. The problem is all people know what racism is. Few people know what the word ableism refers to. And that is a problem, a significant problem, all the legislation in world cannot obliterate. What we need is a social revolution.

Even More on Oscar Pistorius

2013-02-20T10:25:00.001-08:00

The mainstream media response to the arrest of Oscar Pistorius for allegedly killing his girlfriend has been devoid of insight. Nothing I have read in traditional news outlets such as the New York Times or Washington Post has been remotely interesting. Online sources such as the Huffington Post, Salon, or Slate have not faired much better. The tabloids such as the New York Post have published humorous headlines ("Blade Gunner") and juicy gossip. As one might expect, many people with a disability, myself included, have weighed in on the larger cultural significance of the Pistorius story. In my opinion the best essays about Pistorius are located in various feminist websites. I read three particularly insightful essays. Here are the links:
http://www.blisstree.com/2013/02/19/sex-relationships/oscar-pistorius-domestic-violence/
http://tigerbeatdown.com/2013/02/19/the-curious-case-of-reeva-steenkamps-boyfriend

http://thefeministwire.com/2013/02/oscar-pistorius-salvaging-the-super-crip-narrative/

Briana Rognlin at Blisstree writes that "overwhelming reactions fall into two camps: a) disabled people couldn't possibly be violent, especially not ones like Oscar Pistorius who must be saints because they're high achievers in a non-disabled way, and b) he might have been violent because he resented being disabled". Eddie Ndopu at Feministwire writes "I am both fascinated and perturbed by the narratives surrounding the fatal shooting". Ndopu points out the ironic fact that Pistorius "defense team and PR strategists are drawing from ableist tropes to make the case for his innocence". S.E. Smith was particularly insightful at Tigerbeatdown. Smith wrote that Pistorius

"was more of an icon for thenondisabled community than for the disabled community, because of what he represented. His very mainstream successes; adapting to prostheses, becoming an extremely talented and driven runner, working with custom ‘blades’ that were his distinctive trademark, were what made him appeal to nondisabled people. His success as an ‘inspirational’ or ‘heroic’ icon lay precisely in his ability to pass, to conform as closely as possible to nondisabled norms, to become, in essence, one of them. He was safe, comforting, and familiar, presenting a framework of disability that suggested all disabled people aspired to be like nondisabled people, and could if they just tried hard enough.He modeled a specific bootstrapping presentation of disability, one in which people ‘overcome tremendous odds’ and ‘keep persevering’ to achieve greatness. A very specific kind of greatness, one mediated by what is ‘great’ in nondisabled terms."

Smith states the real figures of inspiration within disability rights are people like Paul Longmore and Laura Hershey. Virtually no one outside of disability rights and advocacy knows who they were. Worse yet, few know about the issues they championed: liberating people from nursing homes in particular and more generally the elimination of gross economic, social and political isolation. Smith contends the reason Longmore and Hershey are unknown is because their efforts were rooted in a disability identity and that "they were frightening to nondisabled people in their expressions of independence, of disability pride, or ferocity". I am not sure fearful is the right word but Smith's point is well taken. When a person with a disability is proud, independent and assertive in defending their civil rights the reaction on the part of the nondisabled population is rarely if ever positive. In part, it is why I consider myself a bad cripple. I know my forceful support of disability rights will meet stiff opposition.

What frustrates me is that people with no exposure to disability soak up inspirational stories such as Pistorius' like a sponge. However, when one tries to explain why such stories are grossly misleading and put forth a strident disability rights perspective one can see reluctance, anger, animosity, and resistance. I understand this response because it is based on deeply held cultural beliefs that have great value. We Americans are rugged individualists. We are all equal! What separates us is effort and will power. This simplistic take on disability and life in general reminds me of a book my son loved as small child. I read the Little Engine that Could many times. I love and hate the story. It is American folklore at its best. Or as John Kelly wrote in the Ragged Edge a decade ago: "I think we need to investigate disability inspiration as a form of propaganda that glosses over oppression while simultaneously reassuring normals about the superiority of their ways". Read the rest of Kelly at: http://www.ragged-edge-mag.com/0103/0103ft1.htm I have no idea what will happen to Pistorius. I am equally unsure how the pending murder trial will pan out. Of one thing I am sure: the mainstream media will struggle mightily with framing this story as it unfolds.