Shannon Larratt, Founder of BME Commits Suicide

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

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

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

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

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. 

More on Oscar Pistorius

I just read an outstanding essay about the Oscar Pistorius at Feminist Philosophers. See http://feministphilosophers.wordpress.com/2013/02/18/disability-and-the-individual-achiever/ Andrea Scarpino deftly points out the real problem associated with heros or what I would call super crips or feel good stories.  Scarpino wrote:

This image of the heroic overcomer is familiar. And it’s something that increased media coverage of the Paralympics – with all its focus on “human interest stories” – intensifies, much to the chagrin of some disabled people. Usain Bolt is a track athlete, and he’s allowed to simply be a track athlete. Oscar Pistorius was supposed to be an inspiration, a beacon of hope for future generations of disabled people, a testament that any adversity can be overcome through sheer determination.

That’s what we’re comfortable with, when it comes to disabled people. That’s what we like our stories to look like. Disabled people can be inspirational, or they can be pitiful. They can’t just be normal, everyday people. The man without legs who heroically overcame all odds to be a track star – we like that story. (We like it so much that we’ll conveniently cover up the previous domestic violence arrest, the public temper tantrums, the drunken boat crash, all to preserve the story we want.) The man without legs who desperately needs your charitable contribution to afford a new prosthesis so he can walk his daughter down the aisle at her wedding – we like that story too. The man without legs who became an accountant but is facing some access barriers at work – we’re pretty uninterested in that story.

We want disability to be a story of the individual – of individual need or individual bravery. But for most disabled people, disability isn’t the story of the individual. Barriers to access are primarily social – they’re not a matter of individuals lacking guts or bravado. And no amount of individual charity will solve the social inequality that disabled people face each and every day. The longer we focus on the heroic individual achiever, the longer the everyday social ills are obscured.

The social problems, bigotry really, associated with disability rights is simply not a story people want to discuss. We fawn over Oscar Pistorius, Helen Keller, Franklin Roosevelt, Christopher Reeve, and other individuals who "overcome" a given disability. This is a smoke screen that obscures the real every day barriers people with a disability encounter. Let me relay one incident. The other day I went the post office. The parking lot paint was recently redone. Handicap parking is for the first time in years clearly visible. When I get out of the post office I see a car has blocked the ramp. I am deeply annoyed. I can wait for the driver or walk about one block to the next curb cut. I then would reverse direction by going into the parking lot itself. I am far from thrilled. Navigating the parking lot is dangerous as a departing cars reversing out of spots are not expecting to see a man using a wheelchair. As I think about what I am going to do a few people walk by and know exactly what the issue is. Do I get any support? In a word no. One person laughed and another shrugged his shoulders. I am sure they thought this is an individual problem--my problem. While the incident is minor it reveals exactly what Scarpino articulated--"the every day social ills are obscured". I will know when I have become equal to my bipedal peers when the reaction to my minor problem of accessing a curb cut is radically different. Instead of laughter and shrugged shoulders I hope some day to see anger. I want others to see what took place for what it is: a social violation that will not be tolerated.   

Oscar Pistorius, Helen Keller and the Problem with Role Models

In the last twenty-four hours the press has gone wild over Oscar Pistorius' arrest (he allegedly murdered his girl friend with a hand gun).  Until yesterday Pistorius was widely known as the Blade Runner or the fastest man with no legs. He was the first double amputee to run in both the Paralympics and Olympics.  More generally, Pistorius was supposed to be an inspiration to other amputees and disabled people in general. Pistorius and the corporations he represented such as Nike carefully crafted an image that would make him instantly recognizable. At the core of this image was the fact the good looking rugged South African Pistorius "overcame" his disability. But wait there is more! He never considered himself disabled to begin with. Pistorius is the classic feel good story when it comes to disability. Many of the images associated with Pistorius fit squarely into the "inspiration porn" category that resonates with the general public. Thus Pistorius is but one of a long line of people with a disability, super crips, to be considered a role model for all.

When I woke up this morning I wondered just how many amputees were relieved that Pistorius has been instantly knocked off his pedestal. Nike and other corporations are leaping over each other to distance themselves from Pistorius. As I read the latest news about Pistorius, I thought of Helen Keller, who aside from Franklin D. Roosevelt, is the most famous American super crip. Everyone knows who Helen Keller is. In secondary school children are taught that Helen Keller overcame being blind-deaf and graduated from college--Radcliffe no less. I am sure thanks to You Tube children have seen clips from the black and white classic film Miracle worker. I deplore this sort of overly simplistic reasoning and I despise how disabled role models are portrayed. It is why I cringe every time I am referred to as "inspirational" or "remarkable".  The use of role models when it pertains to disability is inherently destructive.  The role model in disability is narrowly understood: super crip overcomes a physical or mental deficit. The problem rests with the individual. We people with a disability are set up to fail. If we "achieve" the ordinary we are amazing. If we fail it is because we lack the will power to overcome our individual impairment. A so called normal life is beyond our ability.

The super crip as role model conveniently ignores any and all societal barriers. This lead James L. Secor to write the following sarcastic passage: All Oscar Pistorius has done is overcome a handicap that most normal, and, probably, most exceptional people could not overcome. And that pisses y'all off. Who the hell does he think he is, acting like a normal person? He's a fucking crip! He belongs on the sidelines, living a bare subsistence life, dependent on the pity and piteous welfare of peoples and governments, living in holes in the wall or nursing homes--just damn well anywhere but out in the public and independent".

When I read Secor's passage years ago it reaffirmed what I already knew: society is unwilling to accept the fact a person with a disability could compete against world class athletes. Pistorius thus had super human qualities. How else can one explain why he could run so well. Many got caught up with the debate about Pistrorius' prostheses--did he have an unfair advantage. To me, this was a technical question. The real issue was far more complex.  This brings me back to Helen Keller. Keller's life has been reduced to a single fact: she overcame being blind-deaf. Like Pistorius, Keller is held up as a role model for all people who are blind, deaf, or blind-deaf. There is a startling dichotomy involved here: the general public loves the Keller story. People who are blind, deaf, or deaf-blind are not happy. In Blind Rage by  Georgina Kleege she wrote that she hated Helen Keller when she was growing up. Kleege hated Keller because Keller was "always held up to me as a role model, and one who set such an impossibly high standard of cheerfulness in the face of adversity. Why can't you be more like Helen Keller? people always said to me. Or that's what it felt like whenever" Keller's name came up. Count your blessings they told me. Yes, you're blind but poor little Helen Keller was blind and deaf, and no one ever heard her complain".  In "A Note to Readers Kleege noted that she wrote he book to "exorcize a personal demon named Helen Keller".

While I am by no means a Keller expert, I perceive her legacy as being hopelessly misunderstood. Given this, Keller to me is a tragic figure in much the same way Christopher Reeve was after he was paralyzed. Kim E. Nielsen, in The Radical Lives of Helen Keller, wrote: Keller failed to move beyond her political individualism also because like other disabled superstars, she became mired in the performance and ideology of perpetually overcoming her disability. This purpose isolated her from other people with disabilities, for it implied that she was stronger, braver, better, and more determined than they. It also implied that the responsibility for meeting legal, physical, or cultural barriers lay entirely on her shoulders, and that she should respond to such barriers with cheerfulness and vigor. This strategic move allowed her to escape the role of a housebound invalid but depoliticized disability by relegating it to the realm of coping and personal character".

I understand role models hold great appeal, especially for young people who have no idea how their life will unfold. But role models and the super crip myth set up people with a disability to fail. Keller's life, Pistorius' life, Reeve's life were profoundly unusual. They were not mythic beings but rather complex people that had strengths and weaknesses.  Their life had and does hold great meaning but not in the reductionist form that they are known for. So rather than read another speculative story about Pistorius tonight I am going to pull out Helen Keller's FBI file and read about a very complex woman who was a political activist and theorist.