The Road I Have Taken: Christopher Reeve and the Cure; An Interview with Christopher Reeve and Fred Fay, PhD by ABILITY Magazine’s Editor-in-Chief Chet Cooper

The disability community has long been America's largest minority group. Yet for the most part, this minority has remained faceless in the general public. After the shock of the equestrian accident that left Christopher Reeve paralyzed nearly three years ago, people began to see a real opportunity to put a face on the disability civil rights movement. Reeve seemed ideal for the job of spokesperson—an actor and political activist with enormous charm and a Hollywood smile.

Because of Reeve’s celebrity status and extensive resources he found himself staring at a fork in the road. One path held the potential opportunity for him to publicly lead an emerging civil rights movement for people with disabilities while the other path bore the prospect of finding a cure. Not only would finding a cure provide a “get-out-of-a-disability free” card for people with spinal cord injuries, but it would potentially lead to new therapies and cures for countless neurological disorders. The dilemma? It would be difficult for any one person to advance both causes at the same time. It is believed by some people that the quest for a cure is best advanced by highlighting a normative need for people to be able-bodied. On the other hand promoting civil rights for people with disabilities would involve encouraging people to accept and respect people with disabilities just as they are. "It's all right to be disabled. It's a natural part of life. The main thing disabled people need to do is claim their disability, to feel okay about it. Even if you don't like the way society treats you, it is part of your experience, of how you came to be who you are," notes Cyndi Jones, publisher of Mainstream. Similarly, disability rights activist Mary Johnson notes, "Just as homosexuals in the early 1970s rejected the stigma of being gay, disabled persons are saying there is nothing sad or shameful about their condition. They are taking pride in their identity as being disabled; parading it instead of closeting it.”

Nearly three years after his injury, Christopher Reeve’s focus is set on someday walking again. Since leaving the hospital he has had nearly 60 speaking engagements a year, a half dozen television appearances and numerous endorsements. Today he believes the scientific community is very near to providing people who have spinal cord injuries with a means to walk again. Thus, the path that Reeve has chosen is clear. "That is the road I have taken. It just comes naturally to me,” says Reeve. “I am a competitive person and right now I am competing against decay."

Chet Cooper, editor-in-chief of ABILITY Magazine, sat down with Christopher Reeve to speak about the disability community and his life since the accident. Fred Fay, PhD, a disability advocate, joins the interview by telephone. This is the first time that Reeve and Fay have spoken.

Chet Cooper: Are you aware there has been controversy about you being considered a spokesperson for people with disabilities?

Christopher Reeve: I have heard of sporadic incidents. I think at one or two of my speaking engagements. But I don't have any idea of the scope or the scale of the dissatisfaction.

CC: The concept in general is that you have been launched into a position as a spokesperson for people with disabilities.

CR: I wouldn't define myself in that way.

CC: But that is the perception in the country. With the media's intense focus on your story you have become indirectly considered an advocate.

CR: I can't speak for all people with disabilities because I have a very limited knowledge of all disabilities. I am mostly aware of spinal cord injuries, Multiple Sclerosis, Parkinson's Disease, stroke and Alzheimer's—all the diseases that affect the central nervous system and the brain. I talk to researchers and mostly focus on those conditions. There are so many other things and I can't take on the mantle of responsibility for everybody and all conditions.

But I'm doing what I can to raise awareness and that was the purpose of the television special on ABC a couple weeks ago. I mean to get two hours of primetime on national television during the ratings sweeps was to not only highlight spinal cord injuries but to also show at least three disabled performers, two comedians and a dancer was frankly unheard of. Also in my foundation, [in addition to seeking a cure,] 30 percent of the money we raise goes to quality of life issues for people with disabilities. My personal vision and focus is on research, therapies, interventions and cures. I feel I have the right to put my energies where I want them, as does any other individual with a disability. If some person with a disability says, "This is hopeless," or, "This is a waste of time," and that I shouldn't be doing that, then that is their opinion. It's almost like any public figure, there are going to be people who think that Bill Clinton is the best thing that has ever happened to America and there will be other people who think that he is lying and that he should be run out of office. There will always be differences of opinion about things when you are a public figure. I realize that's part of the deal.

CC: There are many people with spinal cord injuries that live a fully functional quality life, independent of walking, and don’t feel their injury is something that needs to be cured.

CR: In my condition I would prefer to walk rather than not walk. That's where I am coming from and if there are other people to whom that is not as important than that's their choice and so be it. I am not judging anyone's particular beliefs or value system. All I am saying is there are a lot of people out there in the same condition as myself that would rather not be in a wheelchair. We were not born meant to be living in wheelchairs. We were meant to be walking upright with all of our body systems fully functional and I'd like to have that back. I was not elected, nor was I appointed. I never went out and said I would take on the mantle of representing all people with disabilities. I can't do that and no one individual can.

One individual may be able to represent AIDS because it's a very specific condition, but I don't think there is anyone with AIDS who keeps wanting to have AIDS. The recognition after Rock Hudson's death and Elizabeth Glazer's child, the work that has been done by Elizabeth Taylor or by Betty Ford on substance abuse have all happened because of a human face that people recognize and attach to the condition. And a lot of forward progress has been made. To ask me to represent all people with disabilities is unfair and impossible.

CC: There so many issues surrounding people with disabilities.

CR: And that's why I can't represent them all. I am not the spokesperson for people with disabilities.

CC: Because of your marquee value you are the most prominent person to have a severe disability. You are already changing the issues. The fact that you have a mobility-related disability and have remained productive and active demonstrates to the world some significant things about people with disabilities. Let’s have Dr. Fay join in this conversation.

CR: O.K.

Fred Fay, PhD (via telephone): I've been following you on the World Wide Web.

CR: Is someone running a web site that chronicles what I am up to?

FF: Yes, there are actually several with a whole lot of information on the various TV shows and movies you're involved in. [There is] a detailed history of your recovery and lifestyle. I'm wondering how accurate they are. I see that you've been very busy and very successful in focusing public and media attention on spinal cord issues. What is your sense on how long it might take to find a cure?

CR: Well I think it will be a combination of approaches. They are working on gene therapy, nerve cell transplants and regeneration. It seems they believe regeneration is the best answer. You don't have to regrow a whole new spinal cord in effect you just need to bridge the gap. This was proved to me the other day when I was at UCLA and I was put on the treadmill. Just like you'd find in any gym. I was suspended in a parachute harness with my full body weight on the treadmill. As the treadmill moved my right leg went back and my flexor muscles in my hip picked up my leg and then transferred the weight to the other one and I moved forward and walked with a practically normal gait without any information coming from the brain. It almost seems like the spinal cord has a memory of what to do. For people who say you only need to bridge the gap, which for my case is only 20 millimeters, that seems to be very probable to me. Of the leading researchers in the world I regard [Dr. Martin Schwab in Zurich ] as the number one man. He has achieved a full recovery in rats who have had their spinal cords transected. On a scale of 0 to 14 where 0 is no movement and 14 is normal, the rats are now walking at a level of 12.5. To the untrained eye you wouldn't know anything was wrong with them. The next step is to humanize the antibody to this protein that inhibits regeneration. My understanding is that if all goes well that he will be ready for human trials within a year.

FF: Justin Dart, who I believe you met at the Paralympics and just received a Presidential Medal of Freedom, said the other day that, "The Disability Rights Movement has lacked a great communicator. If Christopher Reeve were to champion civil rights for people with disabilities then he would have the opportunity to become the front page advocate that our movement has lacked." Do you think down the road that you could find yourself fighting for the rights of people who are blind or deaf or developmentally disabled—an altogether broader coalition of people with disabilities?

CR: Well I don't think that I would be able to be the spokesperson for people with all disabilities because its such a widely diverse group and there are so many attitudes that people have about disabilities. I was just saying a minute ago that pretty much everyone who has AIDS would want to be cured, they would rather not have AIDS. In the Civil Rights Movement of the 1960s, everyone involved wanted equal and fair treatment so there was unity behind the movement. But there are some people who have been in chairs for a very long time who say, “There is nothing wrong with me.” They don't believe that a cure is possible and that it is a waste of time, or maybe they are just in a mindset where they think research is irrelevant. So it is very hard to represent the entire disability community. I am doing what I can based on my own beliefs which is what I think all an individual can do. I am trying to share the effort on behalf of others. I am primarily concerned with diseases of the central nervous system and the brain. My focus is on cures. I think it's possible. Just as possible when Kennedy said in 1961 that by the end of the decade we'd put a man on the moon. For me to take on the entire disability community would be impossible. No one individual can do it. But I am certainly putting my efforts behind what I believe in and that's the most truthful thing I can do.

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