by Lori A. Wood
How will the loss of Christopher Reeve affect public awareness of SCI?
There is a common negative stereotype that surrounds actors. People tend to think of them as vain, self-absorbed people who are unwilling to share time in the spotlight with their co-stars. For the last eight years of Christopher Reeve’s life, he was eager to share that time with a co-star of a different sort-spinal cord injury (SCI).
According to Gerard Kelly, Executive Director of United Spinal Association, that time was well spent. “I think he was a good activist, because he certainly had the public face,” Kelly says of Reeve. “He was a well-known individual. He was a person capable of, and used to, speaking out to the public. And he was certainly someone who was intimately a w a re of, and knowledgeable about, the problems of spinal cord injury. He had always been a person, right from childhood, who could speak out. His training as an actor helped him to speak out in public, and his experiences as a person with an extremely severe spinal cord injury were the impetus to get him going on disability activism.”
Christopher Reeve’s 1995 equestrian accident made the public aware that SCI could happen to anyone and the power of celebrity played a big role in the subsequent surge of media and public attention to the topic of SCI. “That’s been true, not only with Christopher Reeve, but with other high- profile disability people in the past, such as [former Miami Dolphins player] Nick Buoniconti’s son, Marc,” Kelly asserts.
In 1985, while playing college football at the Citadel in South Carolina, Marc sustained an SCI that left him paralyzed from the neck down. “I think that for the average person, the ‘It can happen to me’ syndrome doesn’t really hit them until they see someone like Christopher Reeve and they realize that this was a guy involved with acting and making movies and, in a split second, he was severely injured,” Kelly says.
With Reeve’s powerful presence now absent from the community of disabled persons, some of its members may find themselves wondering what will become of the heightened level of SCI awareness that he helped to generate in the press. Kelly insists that all is not lost. “I think Reeve’s absence presents an opportunity for the community of people who work in the area of spinal cord injury to take his message forward,” he says. “With Reeve gone, it’s not going to be as easy, perhaps, for us to gain the attention of the press as it was for him. He could do that by just appearing in public. We’re going to have to try a little bit harder, but the Christopher Reeve Paralysis Foundation will still be there. And we at United Spinal will work with them and other groups.”
Together, these groups are committed to working with the press in order to further public knowledge about SCI. “One of the things we’ve all tried to do since Reeve’s death is to make ourselves available to the press, to make them understand that when there are questions to ask about spinal cord injury, there’s someone to go to,” explains Kelly. “What we try to do at United Spinal is to make sure that the press understands- not just here in New York, but nationwide- that there are people who are still working diligently in this area [SCI] that have worked this area for years. We know what’s going on with it and we’re able to answer their questions and to push more knowledge of the problems of spinal cord injury—not just securing it, but for living with it on a daily basis—and dealing with the secondary conditions, one of which took Chris’s life.”
One of Reeve’s passions was the furtherance of SCI research and Kelly maintains that the fire the activist ignited doesn’t have to die with him. “It’s up to all of us to make sure the pressure’s kept on,” he says. “He was pushing the stem-cell issue, which everyone’s aware of, not just because of spinal cord injury, but because of other conditions, as well. I think that will be moved forward. But besides spinal cord and stem- cell research, just the whole idea of research, and the needs and the reasons to push research, I think, is in the public’s sight right now and it’s up to the rest of us to make sure that it’s ‘maintained’.”
As for the future of SCI research, Kelly suggests letting researchers do what they do best-seek answers to life’s unanswered questions. “Research works to explore all options and all opportunities and that’s what has to be allowed to happen, that the researchers can do whatever they need to do to solve the riddle of spinal cord injury. I’m hoping that’s the direction [SCI research] goes in,” states Kelly. “It’s the direction that they’ve followed for years; they do try to collaborate as much as possible on like problems and solutions to those problems, but we need to let researchers do what they have to do to solve those problems.”
Though Reeve is no longer with us, he has left a legacy of hope. “One of the strongest messages that he sent was that, just because you’ve had a catastrophic injury, it doesn’t mean that you have to retire from life,” Kelly declares. “He was involved in life fully. He was out there in the public, he was involved in his own family life, and clearly his wife’s been a part of this effort, as well. His children were a reason for him to go on, right from the beginning.”
This is a valuable lesson for people with disabilities. “Severe disability is devastating, it’s certainly a problem to be dealt with, but turn to help where you can,” advises Kelly. “Move on, move forward, and get on with your life. You’ve still got a lot to give to society and to yourself and your family.”
Though movies made him a larger-than-life fictional hero, it was disability activism that made this perception of Christopher Reeve real . “We’ re going to miss him,” says Kelly. “He was a great voice for the field and for the problem of SCI and I think it’s going to be an issue for us, certainly, with him not there. But it’s up to the rest of us to keep the pressure on.”
Lori A. Wood writes frequently for Orbit. She lives in Council Bluffs, Iowa.
