Panel for matching Fukushima to Indian Point

That anti-nuke section discussion commanded by former NRC head person Greg Jaczko went off just about as anticipated today, with Jaczko claiming that localizedizedized stakeholders should get together shortly to organise for the closure of the vegetation. You'll forgive us if we plead to differ. In the meantime, another previous NRC head person, Dale Klein, issued the following declaration through NY locality in relation to how many members of the panel tried to compare a promise accident at Indian issue with the misfortune at Fukushima Daiichi: “Comparing the misfortune at Fukushima Daiichi to a hypothetical misfortune at Indian Point or Pilgrim is intellectually dishonest and resembles the classic worry mongering proposed to create pointless anxiety. The added safety schemes and security methods supplemented to the US nuclear power plants after the 9/11 attacks have substantially enhanced their ability to handle the decrease of off-site power, decrease of the crisis diesel generators, and the loss of back-up electric electric battery supplies. Just like automobiles today have additional security characteristics contrasted to the 1970s designs, todays US nuclear power plants have added substantial security schemes from their primary concepts. The nuclear power plants at Fukushima Daiichi did not have the same improved security schemes as implemented at our US atomic power plants. matching the US atomic power plants to those that have not supplemented new safety schemes and methods is simply wrong.”

Former NRC Chairman Dale Klein remarks on AP Story on Nuclear vegetation security

Yesterday, Jeff Donn of the affiliated Press (AP) published a article on security inspections at nuclear power plants that seemed to raise more inquiries than it responded. Here's the introductory paragraph: The number of security violations at U.S. nuclear power plants varies spectacularly from region to district, pointing to inconsistent enforcement in an industry now operating mostly after its initial 40-year permits, according to a congressional study awaiting issue. Here are a couple of items to hold in brain when considering this article and its deductions: NRC inspections and commerce tendencies show industry security presentation is high. The most latest report from NRC recognised no significant harmful tendencies in security. NRC conducts an mean of more than 2,000 hours of inspections a year at each reactor. NRC will boost the number of inspections if recurring issues are recognised, and NRC habitually has option to close a plant if an inspector deems it doesn't meet government measures. In the initial story, NEI's Steve Kerekes denied to commentaryaryary as AP wouldn't share a exact replicate of the GAO report that they had got. It's a full day later and we still don't have access to the genuine report. One individual who did read the article was former NRC Chairman Dale Klein. He shared the following statement with us once he got a possibility to look at Donn's report: The recent article about security violations at US atomic plants is a blended bag. From a regulatory viewpoint it is significant to recognise mistakes, discover from them and double-check that corrective actions are taken. The atomic Regulatory charge (NRC) has inhabitant inspectors at every atomic plant in the country. These inhabitant inspectors are going to find matters, simultaneously with other inspections that the NRC conducts. It is not the number of safety violations that is significant. The point is to double-check a ascertain and balance scheme is in location to identify potential problems and fix them before a important happening can occur. As a former controller, I have been influenced with the dedication of the inhabitant inspectors that work with nuclear power plant operators to double-check safe and protected procedures of our nation’s atomic plants. Nuclear power is a clean source of electrical energy that should be a part of our total energy program. We should to remind our readers that this isn't the first time Donn has enclosed the atomic energy industry. Back in 2011, Donn composed a multipart sequence on commerce safety that we called "shoddy," "selective," and "misleading." We weren't the only ones who took topic with Donn's describing. The Columbia Journalism reconsider had this to state about the series: [T]he AP sequence, while it undertakes a critically important public policy issue, bears from lapses in organization, narrative exposition, and rudimentary material assortment, what to depart in and what to depart out. Too much is left to rest on inconclusive he-said-she-said exchanges that end up more bewildering than illuminating for readers. In any case, with the help of an technician here at NEI, I'm cutting into into the article and finding some things that just don't appear to add up. gaze for more in this space soon.

Fear Exists for a Good Reason

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 have had pneumonia recently. He knew it would keep happening if we didnot 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 are 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 have 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 am 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

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

 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

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

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.

Thomas Young: The Last Letter

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

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

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 pr�cis 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.