The New York Times has a penchant for publishing amazingly demeaning articles about people who are disabled. A friend sent me a link to an article published last Sunday that took demeaning to an entirely new level. The article was published April 13 and should have appeared in Town and Country. In a special Sunday section, Habitats, an article by Celia Barbour appeared about Bronxville, NY. Entitled "A Place to Get Better and Thrive", the article was as thoughtless as it was vacuous--a life styles of the rich and famous about a wealthy man, Francesco Clark who has been a quadriplegic for six years.
By the second paragraph I knew the article would be dreadful. Mr. Clark is an ambassador for the Christopher Reeve foundation a sure sign that he is oblivious to the civil rights of disabled people. In the article readers are informed Mr. Clark was injured in a swimming accident six years ago and is a quadriplegic. Readers are told tidbits about Mr. Clark's life that include the fact he traveled to China for stem cell surgery, lives in an opulent home in Bronxville, and that two years ago he spent $35,000 converting the family garage into a gym. Mr. Clark is characterized as "well-to-do-enough to afford top-notch treatment" and that he learned Spanish to help him communicate with some of his caretakers. He also comes from a long line of doctors and inherited a creative outlook toward healing.
Obviously Mr. Clark is wealthy. I do not begrudge Mr. Clark his wealth but I sure do question his penchant for surrounding himself with others who share his outlook and interest in innovative treatments and clinical trials. These are the same buzz words and "interests" that Mr. Reeve used to distance himself from other disabled people who did not share the economic power these men clearly enjoy.
In sharp contrast to Mr. Clark, I am far more interested in the economic and social reality that most disabled people are forced to confront. Statistics demonstrate that the vast majority of paralyzed people in this country are unemployed, live at or below the poverty level, cannot afford substandard health care, and many quadriplegics such as Mr. Clark have no choice but to live in a nursing home. Few paralyzed people can afford to purchase state of the art exercise equipment and hire local trainers to work with them for hours on end. Mr. Clark exclaims that the result of his hard work has left "medical community dumbfounded by my progress" (similar claims were made by Mr. Reeve). Perhaps doctors would not be surprised by Mr. Clark's condition if they knew more about the grim social and economic conditions most paralyzed people deal with. I know not a single individual that can afford to live the life Mr. Clark leads.
It is obvious to me that Mr. Clark is using his wealth to insulate himself from other disabled people. In many ways I cannot blame him for who wants to deal with stigma, economic deprivation, and social isolation. Money can buy many things but it cannot purchase equality even for Mr. Clark. Ms. Barbour's article contains many unfortunate phrases such as "confined to a wheelchair" that demean not just Mr. Clark but all paralyzed people. Ms. Barbour is also blissfully unaware of the difference between a medical and social model of disability. She writes that doctors expected Mr. Clark to "accept his fate, curb his expectations, and get used to living on the margins". No such message is sent by the medical community. Based on my experiences as a paralyzed man for the last 30 years doctors are unaware of such social obstacles. The idea that disabled people have limited lives is a social norm enforced by ordinary citizens--your neighbors and mine. Disabled people are marginalized by a social system that denies them their humanity by placing needless obstacles in their way. Sure no one wakes up and thinks I am against the disabled--the social oppression is sanitized and rationalized in a myriad of ways that makes it palatable. Thus people are not bigots but rather fiscally responsible when they refuse to include expenses that provide equal transportation for disabled students in a given school system.
What I hope to see in the New York Times someday is an article about the social and economic variables that prevent equality for all that have some sort of physical deficit. I want to read an article about average people that do not live in Bronxville but rather in a nursing home because they cannot afford a personal attendant at home to assist them with routine aspects of daily life. This is a gripping story and a human rights violation that the New York Times chooses to overlook and conspicuously ignores. I guess fluff pieces like the one penned by Ms. Barbour sell papers.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Tuesday, April 15, 2008
New York Times and Rich Cripples
Posted by william Peace at 9:25 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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You go william. Love your take on this article.
This is powerful--I hope you are sending it to the New York Times as a letter to the editor.
Vc and terri,
Thanks for your replies. I was livid after reading the New York Times article. Mr. Clark needs to take a long hard look in the mirror and think about others with a similar level of injury. I try to go back to a rehab facility every time I begin to think I am somehow different than other paralyzed people. This is always a sobering experience, one that forces me to confront economic and social realities I would prefer not to consider.
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