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Friday, February 15, 2013

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.

Wednesday, February 13, 2013

Sports as Regulatory Rampage

Recently the Department of Justice sent notice that schools must provide athletic opportunities to students with a disability. In part this was a response to a 2010 report from the General Accountability Office that showed students with disabilities participated at significantly lower rates than typical students. Predictably disability rights advocates were thrilled and quick comparisons were made to Title IX. This comparison is flawed as the directive from the Department of Justice is not as sweeping as Title IX, has no social mandate, and has a convenient out: the mandate for inclusion requires schools to make "reasonable modifications". The people who determine what is a "reasonable modification" rarely if ever have a disability or are remotely familiar with disability issues in the broadest sense of the term.

How bad is the situation for students with a disability? Here are some facts gleaned from General Accountability Office. Less than 25% of students with a disability participate in school sports, 10% of students with a disability have never participated in school sports, students with a disability that attend "special schools" are far more likely to participate in sports. Students with a disability get about one hour of physical education a week. 90% of students with a disability would like to participate in school sports. The primary reason students with a disability do not participate in sports are financial. The second most commonly listed reason for exclusion was unwelcoming staff and sport clubs at school.  These bare bone facts demonstrate the Department of Justice had good reason to put schools on notice. Students with a disability have the right to participate in school sports. This is a basic civil right. It is akin to the right to an education.

As I expected conservatives were agahst. Michael Petrilli one of the nations foremost educational analysts blasted the Obama adminstration. In the Huffington Post Petrilli wrote "It boggles the mind that the Obama Administration, without an ounce of public debate or deliberation, without an iota of Congressional authorization or approval, could declare by fiat that public schools nationwide must provide such programs or risk their federal education funding. Talk about executive overreach! Talk about a regulatory rampage! Talk about an enormous unfunded mandate!" What outraged Petrilli is the idea that participation in sports was a "right". A "right" here meaning students with a disability had a "right" to separate sport programs if "reasonable accommodations" were impractical in existing programs. Petrilli instantly twists this to mean students have a "right" to wheelchair basketball. This is grossly misleading for a man who in the first sentence to his article stated he is "in love with wheelchair basketball".

I may be jaded but accessing sports for students with a disability is all about money. On this point Petrilli and I agree. However, I vehemently disagree with Petrilli that the federal government should not be involved. Without a mandate from the federal government there is no chance, none, students with a disability will ever be able to participate in sports. Afterall, it was the federal government that declared in 1975 that students with a disability had a right to an education. Prior to 1975 students with a disability had no right to a public school education--something black students won regarding segregation in Brown V. Board of Education many years earlier.  This line of reasoning falls flat for conservative educational experts such as Petrilli. He went on to write "there are workable solutions" to the problem. "Trade-offs can be considered, priorities identified, compromises made. The right place to hash out these concerns is in school-board meetings, not in Washington. And if the federal government insists on creating a right to these types of programs the correct place to do that is on the floor of the House and Senate-not in the bowls of the U.S. Department of Education".

Petrilli is concerned that "school districts will be on the hook for billions of dollars in new spending". There is no question in my mind this is wildly wrong. Petrilli knows as well as I do that without a social mandate for inclusion very little if any money will be spent on sports for students with a disability. I am sure Petrilli has been to more board of education meetings than I have. He thus knows that the first line item cut is on any budget is disability related. For instance, why spend money on wheelchair lifts for more than one bus when money can be saved by putting every student with a disability on one bus. I call this segregation; school boards call it saving money. An important lesson is being taught: disability rights and civil rights are not the same. It is socially acceptable to segregate students with a disability. More generally, sports play an important part of American society. Social events in secondary schools often revolve around sports, homecoming in the Fall being the most obvious example. If students with a disability are not in some way socially involved with sports exclusion is not only likely but inevitable. The ramifications are significant a fact Petrilli conveniently ignores. Petrilli and others, conservative and liberal alike, need to radically rethink the meaning of disability. The vast majority of people with a disability experience discrimination yet very few will ever file a formal protest or sue. Regardless, civil rights forms a crucial role in the lives of people with a disability. A firm belief in disability rights as civil rights  enhances one's life in a multitude of ways. It is not just sports we are discussing but life well beyond. It is about the social connections, perception of self, job aspirations, sexual relations and much more. Sports are merely a conduit to a vibrant social life.

Monday, February 11, 2013

More on the Verbessem Euthanasia

Today the Hastings Center's Bioethics Forum has put up a post about the Verbessem euthanasia I previously wrote about. The post at Bioethics Forum has corrected errors I made in the past. Please note the reference to Stephen Drake and the difference between "suffering" and "pain". This is critically important.

Here is the link: