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