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Friday, July 23, 2010

Spinal Cord Injury Industry: Part II

In 2004 I lost my temper. Let me explain. I had had it with Christopher Reeve. It took me nine years of listening to drivel about a cure, a dreadful speech at the Democratic National Convention, and a TV show, “Christopher Reeve: Courageous Steps” to lose it. The result was an article in the Ragged Edge, reprinted in the Disability Rag Reader entitled “Wishing for Kryptonite” that I am particularly proud of. I only wish more people read what I had to say—Reeve was a dominate cultural force and my voice was not heard by those I wanted to reach.

In the past month I have confronted an identical dilemma Reeve presented. A new popular voice is emerging in the world of disability. I hope this person will not reach the level of fame Reeve enjoyed—I doubt this will happen but I still worry. I am referring to a man most readers will not have heard of but is on the rise nonetheless. I am referring to Francesco Clark author of the recently released book Walking Papers. Clark is a media darling, well connected in the fashion industry, single, charming, and handsome. He is also a quadriplegic who devotes his time and energy to a cure for SCI. He is an ambassador for the Christopher Reeve Foundation and founder of Clark’s Botanicals. He has been featured in the New York Times—or his parent house was. You can find Clark at fashionable parties in NYC with editors from Harper Bazaar, top models such as Maggie Rizer and Carolina Kurkova as well as designers Narcisco Rodriguez. Frankly I have no idea who these people are but they appear on the pages of Vanity Fair and other magazines that clutter the newsstand. Part of Clark’s emergence is tied to a media blitz associated with his book and the company he founded. Like Reeve, he is wealthy and well connected.

In 2002 Clark dove into a swimming pool and emerged a quadriplegic. He was 24 years old. Walking Papers details his life post injury. His book has been mentioned or reviewed in Vanity Fair, Paper Magazine, Talking Makeup, Tonic and many other fashion periodicals I have never read or heard of. Every mention of his book is breathless—he is lauded as an inspiring figure—see comments at for a stereotypical response. Reviews all note that Clark “suffered a devastating injury”, his life was “thrust into the unknown” and he was “paralyzed from the neck down for the rest of his life”. Oh please spare me the melodrama and hyperbole. This happens to thousands of people a year, none of whom ever warrant a word in the news. Clark is only of interest because he refused to do what the vast majority of people with a SCI do—move on with life. Instead, Clark spent years doing five hours a day of physical therapy in his parent garage converted into a gym at the cost of $35,000. He entered multiple clinical trials and sought alternative therapies for a cure to SCI. He traveled to China where he underwent surgery performed by the controversial surgeon Hongyun Huang. The surgery performed by Huang costs in excess of $25,000 and does not include travel expenses. Most American neurologists reject Huang’s findings and strongly advise their patients not to go to China.

I do not begrudge Clark his wealth and strong family support. He is a lucky man, he states this often and with vigor in Walking Papers. Yet I think he uses his entry into clinical trials, cutting edge research, and surgery as buzz words to distance himself from the social ramifications of his SCI. These interests are well out of the norm—a luxury really—that the vast majority of people with a SCI cannot afford. Let me reiterate—Clark can use his economic power as he sees fit. However, he fails to realize or acknowledge that money can buy many things but it cannot purchase equality. At no point in Walking Papers does Clark delve into a basic fact, people with SCI are marginalized by society and denied their humanity and civil rights. This is as needless as it is wrong. It is also illegal. Searching for a cure to SCI may make Clark feel better about himself but does little to enhance his quality of life, protect or affirm his civil rights, or help other people with a comparable injury that do not have the same financial or familial support.

Clark is very much like Reeve in that he is part of or at the very least enamored with celebrity culture. Clark loves to drop names and was thrilled when friends arranged to have Madonna call him. He was part of the fashion industry before and after his injury—not exactly an industry known for deep thought or advancing social causes. In essence Clark’s book is as superficial as the industry he works in. He is willing to let others consider him inspiring without thinking about the ramifications of such an assessment. Exactly why is Clark inspiring? I cannot think of a single reason after reading 220 pages and wasting twenty dollars. Clark is wealthy man that with his family support lives at home in a lovely house. With strong family support (i.e. financial backing) and connections he started a business of manufacturing and selling very expensive creams and cosmetics at high end department stores. This is a very ordinary story and only unusual because Clark is paralyzed. Here is the key: why should Clark’s success make him any different than a person that can walk? It should not but for doing the ordinary Clark is perceived as inspiring. I for one fail to see any inspiration and instead read a dreary story about capitalistic success. If readers want to read a real life success story I suggest they read about Ed Roberts, known as the father of the Independent Living movement. Roberts is inspiring to me. Robert Murphy, author of the Body Silent is also inspiring to me because he made me realize the stigma I encountered after my SCI was not of my own making but rather a social problem. I was liberated by his book.

None of the figures I admire or history of disability based oppression I deplore factor into Clark’s book. No, for Clark, the problem is entirely personal and practical—paralysis. How very wrong this is! What an erroneous conclusion to reach, one based on an antiquated medical model of disability. Clark accepts without thought the idea disability, SCI in particular, is bad, very bad. Clark is correct in that no one wants to be paralyzed but he needs to put far more thought into the question why. Why is he able to live a rich and full life while others with the exact same level of injury and inalienable civil rights are rotting away in an institution with no chance of escape? Unlike Clark whose focus is on cure and his business I consider the person locked away in an institution far more important. We are talking about people’s lives—lives that are needlessly being lost or wasted. This is a critically important human rights issue Clark and others concerned with a cure to SCI can gleefully ignore. Frankly, I don’t know how these people sleep at night.


Becs said...

But don't you think to some extent that families are to blame? They look at moving on instead of "fighting for a cure" as failure. "John just isn't trying anymore," although John has gone back to work and moved into an accessible apartment.

Also, I don't know how big the DME industry is, but they have a lot to lose if stem cell and other treatments work. No, I don't think it's a conspiracy, but I doubt they're out there looking to make accessibility their main goal.

Just sayin.

william Peace said...

I dislike the idea of figuring out who to blame. I think anyone with an ounce of common sense and access to the internet can lean a cure for SCI in the near future is a pipe dream. If you want to assess who is a winner and loser well there are none when it comes to SCI. But I see your point--people that move on with life after SCI are accepting their fate and not working toward a cure--they are losers. Those that work toward a cure are battling and hence winners. To me, the exact opposite is true. Those that work for a cure, a noble goal for researchers, are wasting their time and accept a negative view of disability. Those that move on and lead a full life are the people who will be in a battle of a life time. A battle against ignorance and oppression.

FridaWrites said...

I agree w/Becs here from experience; this applies to non-SCI disabilities as well. If people are not perceived as "fighting it," railing against that disability identity with all their might, others' judgment kicks in so strong. This becomes internalized disablism--people don't want to be "like that."

How difficult to convey to people the complexity of it all--that yes, while one wouldn't mind walking (there are some things I would like to get back to doing), cures are not forthcoming and we need equality and inclusion now. It's a more immediate and pressing need. People (or the media at least) want simple answers and simple categories and platitudes about disability.

william Peace said...

Frida, You raise good points. Walking is socially perceived to be the ideal means of locomotion. Everything, no matter how hard or time consuming, must be done to achieve the ability to walk. No consideration is given to the ease of mobility a wheelchair can provide nor the independence it can bring to an individual. Socially a wheelchair is perceived to be a failure and by extension the person using less human. This affects all people, young and old that could benefit greatly from using a wheelchair.