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Saturday, March 28, 2009

Life After Spinal Cord Injury

The print media is dying because I am among the millions or people that see no reason to purchase a newspaper unless I want to start a fire. Yet I wonder and worry about how people will access the news in the future. Today, is one of the days I am very worried because I just read and watched the New York Times on line series "Patient Voices", part of the NYT Well Blog. The March 26 story was entitled "Voices After Spinal Cord Injury" and featured four men and two women that experienced spinal cord injuries. The story annoyed me greatly for a number of reasons large and small.

First, the people chosen were not your archetypical person with a spinal cord injury. Most appeared to own beautiful homes, that is expensive, replete with access features like an elevator. Others were portrayed getting into cars with an elaborate lift or wearing obviously expensive clothing. This is not the norm, indeed, this is well outside of the norm. For instance, one man, Francesco Clark, a resident of Bronxville, has been profiled in the NYT in the past. He comes from a wealthy family and is active in the Christopher Reeve Foundation. I do not begrudge these men and women their wealth. I am merely pointing out that the vast majority of people with a spinal cord injury do not possess such wealth and struggle financially.

Second, the entire focus of the story is negative. The people portrayed are considered "patients" who "suffered" a "tragic" injury in the "prime of their lives". The mere fact they are alive and not sitting in a room crying is amazing, "inspiring", and a "reminder of the strength of the human spirit". Oh, please spare me from such trite and antiquated beliefs about the nature of disability. This stereotypical portrait of disability is not just dehumanizing but at odds with reality as I have known it for the last 30 years. You see, I do not consider myself to be one iota different than any other human being than walks. Most people I know that are paralyzed feel the same way. We crippled people have rights, civil rights, and are not afraid to assert them. Get over it.

Third, sentences such as the following miss the point badly and are misleading: "Life after spinal cord injury is filled with the challenge of accepting your injury, coping with your limitations and adjusting to an entirely new way of seeing the world". I assure readers "accepting your injury" is pretty simple when you have no choice. One can feel sorry for themselves and waste their life or accept the fact one will never walk and adapt. I chose to adapt as do virtually all those that experience a spinal cord injury. Only the media likes to focus on those few that can think of nothing else but walking. Why does the media do this? It reinforces the social superiority of those that can walk and provides the rationale for exclusion. As for "coping with your limitations", this does not take long. Once medically stable, most people that experienced a spinal cord injury are self sufficient within months. Much depends upon the level of injury and, sadly, the level of health insured. Being paralyzed I can state without a shadow of a doubt is expensive. But "coping" is the wrong word to use. People, all people, adapt to different circumstances and life after a spinal cord injury is all about adapting. The big difference in adapting after spinal cord injury is that it is a one way street: people who have a spinal cord injury are expected, demanded, to adapt. Our culture does not. Sure we have laws such as the ADA but equal access for those that use a wheelchair is not valued or is perceived to be a choice. Finally, as to "adjusting to an entirely new way of seeing the world" why should the view of the world be any different? Sure I have a physically lower perspective sitting in my wheelchair but the real change is social. I see the world just fine but the way I am perceived has been radically altered. I am part of a the largest most disenfranchised minority group in the world. If I were disabled in a Third World country the odds are good I never would have celebrated my 21st birthday because I would not have survived. This is a human rights travesty few know about. In the United States most people who have a disability, 70%, are unemployed. Mass transportation remains difficult to access and few homes are constructed that are accessible. Durable medical goods cost a fortune and most people with a high level of paralysis live in a nursing home. This I assure is what changes your view of the world. The social obstacles that are built into the structure of our society are the real issue not paralysis from a spinal cord injury.

There was one positive element of the NYT story. I was expecting the comment section to be filled with observations about the men and women in question and how they had "overcome" disability. Much to my chagrin, many of those that took the time to post a comment were as critical as I was. Perhaps progress is occurring. Too bad this point eluded the NYT.

Thursday, March 26, 2009

Kareem Dale and Add On Duty

Kareem Dale is in the news. Dale is Obama's "special assistant to the president for disability policy". Dale's position was heralded by the Vice-President Biden as proof that for the first time in history disability rights would be a major priority of a presidential administration. Fast forward a month, and Dale was appointed another job, "White House staff advisor on the arts and culture". As I have already noted, I am confused and worried. Exactly what is Dale's job? Is he supposed to focus on disability or the arts? Is he supposed to do both jobs?

I had hoped that Dale would clarify his position at the White House when he was interviewed on March 24 by Disability Scoop. Yet, not a word was mentioned about his dual position as the disability and arts advisor in the White House. I expected and hoped this would be the first question Dale would be asked given the fact Disability Scoop is one of the premier sources for disability news. Disability Scoop really missed the ball in their interview. Perhaps this critique is unfair as no one seems to be forthcoming about exactly what Dale's job is. The most critical article published to date was written by Deanna Isaacs today at the Chicago Reader. Entitled "One Salary Saved: Who's poised to be Obama's arts advisor? His disabilities advisor" Isaacs asks the hard question that no one in the disability or arts community has been willing to ask: What is Dale's top priority, the arts or disability?

As of today, there has been no official announcement of Dale's arts appointment. Isaac speculates that the Obama administration may be rethinking this dual appointment. Isaacs has sought clarification from the White House and her calls and emails have been ignored. Eventually Isaac reports one staffer told her someone will contact her "when she has guidance for you". Isaac, like many others, would like a clear and concise answer. Unfortunately the White House is sending mixed messages to people in the arts and disability community and this has muddied an already confusing conundrum. Both those is the arts and disability community have been painfully polite. Andrew Imparto, president of the American Association of People with Disabilities thinks Dale's dual position could be "a mixed bag" and that "with disability issues alone" Dale has a "pretty full plate". I can readily understand why Imparto and others in the arts and disability community do not want to chastise President Obama for straddling the fence with Dale's dual appointment. If I were involved I would not want to risk alienating anyone in the White House. But I am not involved and, like Isaac I want an answer. Which is the top priority for Dale--the arts or disability? No single person can do both jobs well. One community will suffer. Like it or not that is just the way it is. Thus I admire the final sentence in Isaacs article: "Disability and the arts each need their own point person. Fix it". I could not agree any more" Please fix this mess President Obama.

Tuesday, March 24, 2009

Community Choice Act and Who is Disabled

Yesterday I got a few emails about the Community Choice Act. I have written about the CCA in the past. Today, Iowa Sen. Harkin and Illinois Congressman Davis will join disability rights activists and introduce the CCA. In the view of many, the CCA is needed to empower people with a disability. The CCA will provide disabled people an opportunity to live as independently as humanly possible and overcome needless social and economic barriers that force people into institutions. Essentially the CCA eliminates the nursing home mentality and bias. The CCA permits people with disabilities who need assistance the choice of receiving services and support in their home or community rathe than an institution.

I have no idea if the CCA will be made the law. Sadly, I am not hopeful in large part because the meaning of disability and its social consequences is not well understood. In calling for the passage of the CCA Nick's Crusade wrote the following:

Who is more disabled? The successful banker who happens to be quadriplegic, and gets up each weekday (with the help of assistants) and goes to work, contributing to the community and pulling down over $100,000 a year? Or the dude who still lives in his mom’s basement, who can do chin-ups, run and jump, but is unwilling or unable to contribute to society? Who is more disabled?

Anyone who uses a wheelchair is the archetype for disability. I am that archetype and yet in many ways I am not disabled in any way. Sure I cannot walk but walking is overrated and my wheelchair is an empowering adaptive device. The inability to walk has not prevented me from doing any of the things I wanted to do. I got married (and divorced), had a child, and remain steadily employed. The problems I have encountered since I began using a wheelchair are man made--American culture imposes social, economic, and political hardships on top of an existing physical deficit, in my case paralysis. The CCA will go a long way to undermine the hardships people with a disability encounter. The CCA will empower people with a disability so that they can be an integral part of their community. It will help prevent people with a disability from needlessly ending up in an institution. This is great but requires a more nuanced view of the social implications of disability. I hope people are willing to listen to Sen Harkin and Congressman Davis and I wish them well today.

Monday, March 23, 2009

Get Over it: But What are We Getting Over?

President Obama has taken some heat over his bad special olympics joke on the tonight Show. The criticism Obama has been subjected to has not resonated with the general public and most political commentators. The Wall Street Journal lamented the fact Obama was "getting lashed by the political correctness police". The Washington Times chimed in that Obama's joke was a "ginned-up controversy" from the forces of "political correctness. A quick google search will reveal thousands of articles have appeared in the last few days and based on a random sampling one could easily conclude people with a disability are humorless people. One theme comes through loud and clear: Get over it! It was a bad joke and nothing more than that. People with a disability cannot take a joke and are hyper sensitive.

I think I have a pretty good sense of humor. I also think disability can be very funny and more than one student has told me I am an entertaining lecturer. So, have I missed the point with regard to Obama's attempt at humor? In a word, no. Obama's joke, like the Saturday Live Skit lampooning Governor Patterson a few months ago, is not funny because it is based on a stereotype. The stereotypical assumption is that special olympics athletes are inept mentally and physically. This is not true. Some special olympians are gifted bowlers. How do I know this? Unlike most Americans I have watched the Special Olympics. My viewpoint is based on fact not an antiquated stereotype.

To date, I have come across just one insightful critique of the controversy Obama created with his so called joke. On the blog Wheelie Catholic Gary Karp commented on an entry entitled "The Question". Gary Karp lamented the fact that Obama's special olympic quip overran a key point he wanted to get across when he was able to ask the President a question about disability at a town hall meeting. Gary Karp is correct: Obama's joke about the special olympics has generated a lot of press most of which is not good for reasons I mentioned above. Karp wants the focus to be on whether a "true renaissance in the lives of people with disabilities" has taken place. In a remarkably astute observation Karp began his question to the President of the United States by stating:

Sir, my question regards the true renaissance that’s happening with people with disabilities. They are an emerging population — millions of people with more potential in capacity, more mobile, more educated, more healthy, more empowered technology, but still trapped in very, very old social models that see them in terms of tragedy and charity and need and care. And the modern population of people with disabilities simply does not fit that model.

Amen! Boy, I wish I could have been with Karp when he said this. I doubt I could have been as articulate, polite, and on point if given an opportunity to ask the President a question. Karp is correct about people with a disability as being an emerging population that are trapped by antiquated notions about the meaning of disability. In the last two decades more people with a disability are able to access an equal education and schools are becoming better at dealing with students that have cognitive and physical disabilities. But one thing has not changed as rapidly: the unemployment rate among people with a disability is staggeringly high. To me, this is a clear sign that people with a disability encounter an overwhelming social bias when they try to enter the work force. Given the choice between a qualified person with and without a disability I suspect most employers will choose the person without a disability. This is a significant problem and as the economy has nose dived in the last year the people who have struggled the most include those with a disability. Thus, Karp asked the President how will his economic stimulus package "release the emerging potential that's currently wasted and untapped?"

How indeed will the economic stimulus package empower people with a disability? This is a story I would like to see the Wall Street Journal cover. People bemoan the high rate of unemployment but no national outcry or debate has taken place with regard to why people with a disability are unemployed in overwhelming numbers. Instead, people with a disability that assert their civil rights are considered to be "difficult" or have a "chip on their shoulder". In the case of the special olympics joke people with a disability are considered "humorless" and "politically incorrect" when they object to baseless stereotypes. How exactly are people with a disability supposed to succeed? The mainstream media is quick to exploit great visuals of a person with a disability doing something "remarkable" that reinforces the well worn idea of people "overcoming: their disability. Yet no stories emerge about the ordinary person with a disability that simply wants to have a job, career, family and community in which they are treated equally. The reasons why this is so difficult is worthy of sober study.