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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.

13 comments:

cmzacc said...

I am mrs zaccagnino and you have no idea what you are talking asshole.....

Whitney said...

A bad cripple? You're a bad person. Fighting for the ability to walk again makes her narcissistic? I think not. Her goal is to walk again and show others they can as well. You write this article as if you know more about this individual then what you have read from off the internet? Her comfort level with herself and her situation is impeccable. She is a college graduate who does work and does take care of herself and does actively raise awareness about the social disadvantages faced be people with disabilities. Its awfully narcissistic of you to hold your opinion so high and mighty and treat Ms. Zaccagnino's dreams like they are nothing because they are not the same as yours. In your 30 years of being paralyzed have you learned to be less judgmental of others? Clearly not.

If striving to run, jump and dance again while inspiring others along the way makes her a bad cripple then so be it!

Shanna said...
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Shanna said...

I pity you Bad Cripple. You preach equality for disabeled persons in wheelchairs and criticize Ms. Zaccagnino for her decision to think beyond her condition and strive for her dream of walking again. I walk on two legs and I dont consider myself Ms. Zaccagnino equal, because she is exceptional. I can only pray to have half her strength, perseverance and passion. Her will and positivity seem to be beyond what your acrimonious logic can comprehend. "Why focus on a cure?" because some are unwilling to accept anything less then their dreams. Shame on you to disparage those who dreams. Shame on you.

william Peace said...

Whitney, You missed the entire point of the post. I used the person in question to highlight a larger problem people with a disability encounter--social prejudice. If she wants to walk again good for her. If you want to find this effort inspiring go ahead. But be aware there is a down side to all this. Others will assume the goal of walking is universal among people with a disability and consider them somehow less human until that goal is reached. I for one far more interested in social equality. Surely my effort for the civil rights of people with a disability does not make me a bad person.

Shanna, Shame on me? No shame would be called for if prejudice against people with a disability did not exist. You see I have a dream too--equality for all those with disability including Zaccagnino.

Mrs. Zaccagnino, I am sorry if my words upset you. That was not my intent. The point of all my writings on this blog are to foster social change in the hope that people with a disability will be treated equally as is mandated by the law.

Rina said...

Your narcissistic bitterness is showing in your sweeping generalization that "others will assume...and consider them... less human until that goal is reached."

You claim that your goal is to achieve social equality for all disabled individuals. If you are sincere, I recommend you start by mustering the moral courage to forbid "others" from defining the standards of your human value.

william Peace said...

Rina, You accuse me of being narcissistic and bitter. I am any but. I think I have a healthy ego and identity, one that is tied in a positive way to having a disability. The issue is that many people in American society perceive disability as inherently negative. Based on this assumption society assigns a host of less than desirable attributes that are tied to disability. I see disability as a different state of being. I rail against social injustice. I do so in part because I refuse to be defined by others.

Ruth Madison said...

Wow, I'm surprised at the flak you're getting. Shows that you are right, people are obsessed with cure.

As you said, walking is over rated. It isn't the most important thing in life. There are much more important things to focus on, and getting all buildings accessible would accomplish so much more, allowing people to pursue real dreams, striving for something that matters in life.

cmzacc said...
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Leo Hallan said...

walking is over rated, to funny, give me a break, i've been a c4/5 complete for almost 37 years, advocated with ADAPT, and went to china before christan, i did get some return of sensation and a bit more but that's beside the point, you seem to assume christan and those advocating for the cure are taking for granted the early accomplishments made by previous advocates, assumtion

instead of seeing the cure efforts as working being done to improve the human condition, guality of health, equals guality of life, it's your type of view of things and people's actions that will keep people in chairs for ever, the worlds not flat no more.

regards, leo

Paolo said...

Bad Cripple go to see a doctor, I mean a good psychiatrist can tell you what your problem is.

Paolo

Paolo said...

Go to see a psychiatris, maybe he can halp you a bit.

Paolo

william Peace said...

Leo, I am not sure why this post from 2007 is suddenly generating responses. I have stated repeatedly on this blog and elsewhere that I think a cure for SCI is a laudable and worthy of research. I simply have no interest in this effort. And I do object to traditional methods used by the cure industry to raise money for this goal. If you are active in ADAPT I am sure you are familiar with slogan Piss on Pity. I see a wheelchair as a powerful and liberating technology. Would I prefer not to be paralyzed? Of course. But I am paralyzed and seek to empower all people with a disability through scholarship and advocacy.
Paolo, Not exactly a helpful or constructive comment. Perhaps you could make a comment of some substance I could reply to.