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Since his injury, he has antagonized those active in the fight for disability rights and insulted innumerable disabled people who are more concerned with social injustices than a cure for paralysis.

 

Wishing for Kryptonite:
A response to Christopher Reeve's pursuit of cure

by William J. Peace

Shortly after Christopher Reeve was paralyzed in a horseback riding accident in 1995, he vowed he would walk again before he was 50 years old. Such vows are hardly unusual after a traumatic injury. To make the same claim -- and to devote all one's time, effort, and money to such a vow -- seven years later is decidedly so.

Already paralyzed for over a decade when Reeve was injured, I thought many of Reeve's proclamations about walking again were misguided. I blamed the press for printing such empty rhetoric and hoped, given time, he would learn that such statement were counterproductive. At worst, I thought his interest in walking again would become a side interest and that he would return to his acting career. Hopelessly na´ve and surrounded by all the wrong people, though, Reeve has not deviated from his desire to walk again. Indeed, as the years have passed, he has become increasingly obnoxious about his expectations.


For the first time I too wished I could will my body to move. Had I been able to, I would have kicked my TV.

 

Since his paralysis, Reeve has spent huge sums of money on "exercising" his body and has used his celebrity to lobby for stem cell research. He has also created a foundation whose goal is the cure of paralysis. While his ultimate goal, a cure for spinal cord injury, is laudable, the manner in which he is going about it is deeply offensive. Disability rights activists cringe when he is quoted and I am convinced his activities have not only hindered but harmed disability rights.

In the past I have refrained from criticizing Reeve in part because I refused to believe an intelligent person with a disability could be so narrow minded and oblivious to the stigma associated with disability. However, Reeve's latest ABC television documentary, Christopher Reeve: Courageous Steps, was the last straw for me. I sat stunned when Reeve's informed the viewer that he "willed" his body to move his finger. When I heard this pronouncement, replete with the appropriate drama and gasps from loved ones, for the first time I too wished I could will my body to move. Had I been able to, I would have kicked my TV.

Already wealthy and well connected in Hollywood, Reeve is not your average paralyzed person. Since his injury he has antagonized those active in the fight for disability rights and insulted innumerable disabled people who are more concerned with social injustices than a cure for paralysis.

It is not just Reeve's proclamations that are misguided. The breathless comments of those beholden to him are just as bad. "If there is anybody that's going to get out of this [paralysis], it's him," said Chris Fantini. "Nobody in his condition ever worked as hard for this long."

Fantini is absolutely correct: no one has spent such an inordinate amount of time and money -- nor have they surrounded themselves with a staff of people -- for a goal that is so unrealistic. No single individual has spent so much and done so little for others in a similar situation. And no one has ever been as oblivious to the fact that all the ramps, elevators, and lifts he uses were fought for by the people he is actively alienating -- a fact I find a cruel irony, for the people who fought so hard for disability rights have enabled a monster to be unleashed.

The gross disparity between Reeve and his paralyzed brethren is readily transparent in one scene from the documentary. The viewer sees Reeve lowered into a pool, surrounded by at least a dozen people, including one of his doctors. Once in the pool, Reeve is assisted by at least four people -- and the viewer is supposed to be awed by the fact he is supposedly able to move his legs with five pound ankle weights on them! This tremendous expenditure of energy is part of an ongoing rehabilitation process directed by John W. McDonald of the Washington University in St. Louis -- its Activity Based Recovery Program. Of one thing I am sure: there is only one respirator-dependent quad in the continental U. S. who can pay to mobilize so many people.

Here's what I kept thinking about during this scene (and the others like it designed to pull at viewers' heartstrings): what about the other people with injuries similar to Reeve's? What are they doing? Are they, too, living in a palatial home in Westchester County? Are they surrounded by a dozen people looking for the slightest movement? Are they being cared for by a staff of people and flying to St. Louis to participate in the program Reeve is active in? Do they have a multimillion-dollar foundation in their name? Does a major medical school like Washington U. send out press releases and devote part of their website to their progress? I think not.

With neither access to such high-level medical care nor the financial resources to hire fulltime employees, how many C2 ventilator-dependent quads are dead or rotting away in nursing homes?

I am convinced Reeve simply does not care about others with similar spinal cord injuries; and that he uses his privileged position to distance himself from other disabled people. I have never read nor heard Reeve bemoan the fact the unemployment rate among disabled people in the United States is about 66 percent. Or that the vast majority of spinal cord injured people lack access to basic health care and are routinely hospitalized for problems such as skin breakdowns that could easily be avoided.

I do not begrudge Reeve's wealth or position. I do take exception to his belief that he is somehow different. Despite the fact he has limited movement and has recovered some sensation, he remains a ventilator-dependent quad. I also do not believe that the recovery of sensation and limited movement is all that unusual in quads long after the original injury.

In separating himself from other disabled people, Reeve has lost a golden opportunity to raise awareness of the myriad problems disabled people encounter daily. As I too live in Westchester County, I never cease to be amazed by his complete lack of interest in wheelchair access. The New York Rangers raise funds for the Christopher Reeve Foundation as part of an event called Super Skate. In spite of this fundraiser, wheelchair seating at Madison Square Garden is appallingly inadequate. Disabled people sit in the aisles and are routinely bumped and jostled. I sincerely doubt Reeve faces the same obstacles when he wishes to see a Ranger game with his family -- nor does he consider what it is like for others who would like to attend such a game -- or try to do anything about those obstacles for others.

Reeve would like to blame government restrictions on stem cell research for his failure to walk. "If there had been full government funding of embryonic stem cell research," he said, "I believe we would be in human trials by now. And there might have been a possibility of realizing the goal [of walking again] that I stated in 1995." Such speculation may let Reeve sleep better at night, but it does absolutely nothing to enhance the quality of his life or others. Unfortunately, disabled people will continue to endure further observations and declarations of this nature by Reeve.

In the documentary's only scene that accurately depicted the reality of life for a ventilator-dependent quad, we see Reeve obviously and profoundly disappointed with the failure of his effort to breathe independently of the ventilator. Here he quietly reveals that his most ardent wish is to be free of the respirator -- a modest wish in light of his desire to walk again. In this attempt to wean off his ventilator, I wish him well.

As to his desire for a cure, though -- when he engages the media in this disability-disowning folly, I wish someone would quietly place some kryptonite nearby.

Posted Sept. 24, 2002


William J. Peace is a freelance writer.

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