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.

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.

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: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=6222&blogid=140

Euthanasia and Disability

On Wednesday I gave a talk to students at King's University College at Western Ontario University. King's has interesting course offerrings in disability studies. Spearheaded by Pamela Cushing, an anthropologist on the faculty, I thoroughly enjoyed the time I spent with students. The students were engaged and alert when I spoke. They also asked cogent questions that made me think. I spoke about the mainstream media representation of disability. I tried to make four general points about the media and how skewed disability is portrayed.1. Disability rights and civil rights are one in the same. A point rarely made. 2. Feel good stories about disability abound that are inherently demeaning. 3. Disability rights violations are the norm. 4. People without a disability are swayed by a grossly distorted notion of what disability means socially, politically and economically.

I used two examples from this blog to illustrate my point: my analysis of Purple Feather in 2011 and the recent double euthansia of deaf-blind twins in Belgium. I hope I made an impression on the students because they are our future. It is my hope the generation of students currently attending university will have a far more nuanced view of disability. Academic programs that focus on disability are desperately needed in Canada and the United States. The fact that King's has such a program is heartening. There is hope for the future if the students I met are an indication of how disability is perceived.

Sports as a Civil Right

In the last few days I have read many stories that assert playing sports for a person with a disability is a civil right. These stories were prompted by the U.S. Department of  Education Office for Civil Rights that issued a thirteen page report requiring schools to make "reasonable modifications" in an effort to include students with disabilities in athletic programs. As I understand it, the government is requiring schools to include students with disabilities in mainstream athletic programs or provide parallel options. Many believe this is an important development in disability rights. To a degree this is true. Writing in Forbes, Arthur Miller, Art Caplan and Lee Igel stated:

Asserting access to athletic programs as a civil right is a big step forward for our education system and, of course, for people with disabilities. It highlights the important role that sports can play in the development of young people as functioning and contributing members of society. It also serves to help decrease the stigma too often associated with physical, mental, and emotional disabilities 

There is no question the inclusion of students with disabilities in athletic programs is a great idea. I accept this as a given. The real issue is who gets to decide what is a "reasonable modification"? In addition what sport or sports will be modified? What adaptive sport equipment will be purchased? I sincerely doubt the "reasonable modifications" required will be reasonable to me and others with a disability. Many compared the requirement of equal access to athletic activities for people with disabilities to Title IX. Title IX undoubtedly revolutionized sport options for women. However, Title IX did not make female athletic programs cash cows like many male sports such as football and basketball. If female athletic programs play second fiddle to comparable male programs I would suggest   sports for people with a disability will place a very distant third.

At a practical level, I cannot foresee schools being willing to spend money on adaptive sports equipment. For instance, many schools in Vermont have ski teams. Will a school be required to purchase a mono ski for students with disabilities that express a strong desire to join the ski team? A mono ski rig costs many thousands of dollars. Will a school be willing to rent a mono ski for the season? Will school districts pay to have its athletic teachers be trained in adaptive sports? The resounding answer to these questions is no. When my son attended public school I was stunned at the degree of hostility I encountered. Any request I made in terms of wheelchair access was met with a firm and not so polite no. Reasonable accommodations at the university level are equally problematic.

I believe the root of the problem is financial and the lack of any presence on the part of people with a disability. Making "reasonable modifications" for people with a disability is expensive. School districts simply do not want to "waste" limited resource, money, on students with a disability. Compounding this problem is the fact people with a disability are not involved when decisions are being made. The utter lack of representation is a significant problem. I have attended many meetings where I am the lone voice advocating on behalf of access for people with a disability. I cannot tell you how many times my words have been met with silence. Kind words are spoken and many will nod their heads in approval that in an ideal world such an expense should be made.  An awkward silence will ensue. A vote will be taken and access is always the first line item cut. The result is I am perceived as a narcissist. I have been told it is "always about you". The fact is it is never about me but the person with a disability behind me--the next man or woman who will not have to fight for inclusion. It is a lonely isolating and losing battle I have fought.

The bottom line for me is simple: the inclusion of children in school sport is a wonderful idea. I have seen how sports can revolutionize the perception of people with a disability. When I ski many people think adaptive skiing is cool. However I do not think there is the social mandate for inclusion of children in school athletic programs. Without a social mandate schools will do what they have always done--ignore the law. I hope I am wrong.

Down Syndrome: The Garcia Story

I am sure most people interested in disability rights have heard and read about Michael Garcia. Garcia is a waiter in Houston who has been hailed a hero or champion of disability rights. Garcia was serving a family of regular customers who had a child with Down Syndrome. According to Garcia a group of people at a nearby table were disturbed by the presence of a child with Down Syndrome. They requested to be moved to different table. Garcia overheard someone at this table state "Special needs children need to be special somewhere else". Offended, Garcia refused to serve these customers. All the major news outlets have published feel good stories about Garcia. There is no doubt Garcia and any other person that stands up against to such blatant disability based discrimination should be lauded.  Garcia risked his job and he has been widely praised on his Facebook page and the restaurant website.

The Garcia story is heart warming yet I cannot help but feel story after story missed the most important point: disability based prejudice is an every day experience.  Only one story I read about Garcia has attempted to explain why the incident in question is unusual: See George Estreich "A Child with Down Syndrome Keeps His Place at the Table" (http://www.nytimes.com/2013/01/26/opinion/a-child-with-down-syndrome-keeps-his-place-at-the-table.html?_r=0  One does not even need to read the op-ed link. The title tells it all. The fight for inclusion of the most mundane sort for people who have a disability, eating out at a restaurant, is not easy and can often turn into a battle.  As Estreich points out, disability rights is a work in progress. There is no doubt disability based bigotry is less common. That is the sort of disability based discrimination I faced circa 1980 would be frowned upon. Large institutions such as Willowbrook State are closed. Progress has undoubtedly been made. However there is a long way to go. The greatest successes in terms of disability rights have been made in the law. The last forty years have witnessed law after law that seeks to empower people with a disability. The problem as I see and experience it is that the laws that protect my rights and the rights of people with a disability are ignored and lack value. Without a social mandate for disability rights all the laws in the world cannot protect my civil rights. Violations are the norm. As Estreich pointed out, there are no more Willowbrooks but are group homes an ideal environment for adults with cognitive and physical disabilities. The New York Times published a scathing series of articles about abuse in group homes. One has to wonder are group homes simply small institutions. The point here is not to question whether  group homes are the ideal but rather suggest disability rights is complex with a unique history that is not taught in our secondary schools or university system. The result is the average person does not equate disability rights as civil rights. As I have stated many times, disability rights and civil rights are one in the same.

I have thought about the Garcia story a lot in the last few days. I had a close friend visit me this week. He is a noted poet and scholar. He also happens to be blind and has a great guide dog. We decided to go out to dinner with two other people who are also blind and have guide dogs as well. The best night to eat out was Friday. My first thought was not where to eat but rather eating out on a Friday night is a bad idea. Three people, three guide dogs and my wheelchair take up a lot of space. Extended discussions ensued most of which revolved around determining where we would encounter the least resistance to our presence.  There is no doubt in mind the mental logistics we went through were unique. No bipedal person with sight would have been forced to make the same social calculations we made.  Estreich is correct in a very real and tangible way that we people with a disability have to fight for out place at the metaphorical table. I wish I could state our dinner went smoothly. Our meal was great, service good but our departure was an adventure. For my friend's take on this see the follwing link: http://www.planet-of-the-blind.com/2013/01/hey-you-yeah-you-driving-the-lexus.html

Mass Transportation NYC Style

I love to travel despite the fact I routinely encounter trouble accessing mass transportation systems. As I have detailed in many posts the airline industry is inherently hostile to any person with a disability. Trains are hit and miss at best. Buses are the most reliable form of mass transportation in my experience. Access issues vary widely from one city to another. San Francisco, Portland, and Seattle are relatively easy to navigate. At the opposite end of the spectrum is New York City. Aside from MTA buses the train and subway are difficult and time consuming to use. Forget about taxis. Mayor Bloomberg has made it crystal clear the city has no interest in making taxis accessible. While MTA buses are reliable they are slow. The most efficient way to get around New York City is the subway system. Good luck with that! I try to use the subway at least a few times a year. Rarely have I been successful. Few stops are accessible and even if an elevator is present at a renovated stop they are usually not operational.

None of the above is news to a person that uses a wheelchair in NYC.  I mention because the New York Times published a good article and video about navigating the city. See http://www.nytimes.com/2013/01/17/opinion/the-long-wait.html Jason Dasilva breaks no new ground here. Two decades after the ADA was passed accessing mass transportation in the city is a challenge. Dasilva, an independent film maker, lives in Williamsburg Brooklyn. In a short Op-ed film Dasilva leaves his home for the Union Square area in Manhattan, a typical trip for a resident. Dasilva's journey though is not simple or efficient. It takes him nearly 90 minutes to make a one way trip. Dasilva's friend made the same journey in less than 15 minutes.

It is films like Dasilva's and my own experience navigating mass transportation systems nationwide that make me aware of the fact I am disabled. It is not my disability that is the problem but the refusal of mass transportation systems to accommodate a wide range of disabling conditions. At no point in my life am I as aware of social barriers than when I access mass transportation. Elevators are routinely broken or simply non operational for unknown reasons. Employees are often rude and dismissive. Virtually no one has a clue about how to navigate a terminal or can locate accessible routes. Even when present accessible routes are convoluted. Curb cuts in one place handicapped parking in another. The net result of decades of hassles is that I am convinced we as a culture do not value access. I have felt and continue to feel as though I am on my own. My fellow passengers are never supportive. Employees  of mass transportation systems are not pleasant. Nasty employees are hardly uncommon. Ignorance abounds.  This is not just a "long wait" as the NY Times article is entitled. The issue is needless barriers are created and supported by a social system that does not value my presence.