Disability Rights are Civil Rights

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

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

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

On inspiration: 

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

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

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

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

 On race:

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

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

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

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

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

I knew she was going to get race in there!

The article baffled me. 

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

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

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

Even More on Oscar Pistorius

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

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


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

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

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

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

More on Oscar Pistorius

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

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

That�s what we�re comfortable with, when it comes to disabled people. That�s what we like our stories to look like. Disabled people can be inspirational, or they can be pitiful. They can�t just be normal, everyday people. The man without legs who heroically overcame all odds to be a track star � we like that story. (We like it so much that we�ll conveniently cover up the previous domestic violence arrest, the public temper tantrums, the drunken boat crash, all to preserve the story we want.) The man without legs who desperately needs your charitable contribution to afford a new prosthesis so he can walk his daughter down the aisle at her wedding � we like that story too. The man without legs who became an accountant but is facing some access barriers at work � we�re pretty uninterested in that story.

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

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

Oscar Pistorius, Helen Keller and the Problem with Role Models

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

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

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

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

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

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

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.