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Thursday, October 4, 2007

Why Focus on Cure?

There were many things I never understood about Christopher Reeve after he was paralyzed. Foremost among them his intense and singular focus on cure. His vow to walk again was hardly unusual as many make the same pronouncement after a traumatic injury. In 2002 I was severely critical of Reeve in an essay that appeared in the Ragged Edge--"Wishing for Kryptonite". I maintained that Reeve's overwhelming interest in cure was highly unusual--that virtually no one has ever been willing to devote all their time and money in an effort to be cured. A newspaper article in the local paper, "Portchester Woman Happy with Progress after Chinese Spinal Surgery" makes me wonder if my views about cure are correct (www.lohud.com/apps/pbcs.dll/article?AID=/20070928/news02/709280387).

In the above article, Christan Zaccagnino who lives just 30 minutes away from me, went to Beijing where she underwent spinal surgery. If Ms. Zaccagnino had been paralyzed within the last two or three years, I would not be surprised by her decision to search out a cure for her paralysis. However, Ms. Zaccagnino was paralyzed 14 years ago in a diving accident when she was 10 years old. Given this, I cannot begin to understand her thought process. Undoubtedly she was aware that the neurosurgeon who operated on her, Hongyun Huang, treatement is not just controversial but has no documented success rate. American neurologists strongly advise patients against the invasive procedure because some people had serious complications such as meningtis. This did not stop Ms. Zaccagnino from traveling to China or raising $30,000 needed for the surgery through fund raisers. According to the article, Ms. Zaccagnino is not alone--400 other paralyzed people have made a similar journey and undergone what appears to be a high risk procedure.

It would be easy for me to be critical of Ms. Zaccagnino and her strong religious convictions--she refused to have cells from aborted human fetuses implanted by Dr. Huang as is the norm in the preocdure she underwent. Like Reeve who also underwent questionable medical proceedures, the gains for Ms. Zaccagnino's were minimal. This leads me to ask, why take such a chance? Is walking really that important? Based on my life experience, walking is highly over rated. Humans are amazingly adaptable and there is very little I cannot do. So why have 400 people traveled to Beijing to be cured? I think such individuals are self absorbed narcissists. It is far easier to accept dominate socio cultural norms about disability than it is to rail against injustices and fight for equal rights. It is easy to sit around (pun intended) and pray for a cure than it is to go out into the world and get a job. It is easy to thoughtlessly use ramps and elevators disability activists fought decades for. It is easy to go to college and not think about the men and women who had to fight for the right to be educated in the 1970s. It is too easy to forget about people like Ed Roberts or Justin Dart. It is easy to just accept the ADA exists however weak it may now be without considering what it was like to prior to 1990.

If I have learned one thing in the last 30 years I have been paralyzed it is that being disabled is social problem. The real obstacles are not architectural but social. How else can one explain why 66% of Americans with a disability are unemployed and do not have access to adequate health insurance. Do not get me wrong, I am not against a cure for paralysis. This is a lofty goal. Perhaps I too am a narcissist for my goal is for paralyzed people to be equal to their fellow humans who are bipedal. This is in my best interests. For me, civil rights are more important than walking.