Within months of his injury, Reeve joined the Board of Directors of the American Paralysis Association (APA), and less than a year later became its chair. Earlier, spinal cord research had been a backwater because conventional wisdom deemed the condition incurable. However, by the early 1990s, scientists were challenging that dogma, accomplishing feats such as nerve regeneration in rat spinal cords. Reeve reasoned that the more time researchers were at the lab bench and the less time they were writing grant proposals, the quicker they’d develop treatments. The APA was already funding research aimed at finding a cure for paralysis. Reeve’s association with the organization made it much easier to raise money and put a face on spinal cord injury, thereby attracting proposals from investigators who weren’t previously interested in the problem. In 1996, Reeve and his wife, Dana, established the Christopher Reeve Foundation; in its first year of operation, it raised $750,000 for the APA as well as groups dedicated to quality of life issues that affect disabled people. In 1999, this foundation merged with APA, the name was changed to the Christopher Reeve Paralysis foundation (CRPF), and Reeve continued to serve as chairman of the board. CRPF funds research that paves the way toward treatments and cures for paralysis caused by spinal cord injury and other central nervous system disorders; the organization also allocates a portion of its resources to grants that improve the quality of life for people with disabilities. In 2003, the foundation expects to award almost $7.4 million in grants for neuroscience research and more than $620,000 in Quality of Life awards.
The combination of his personal commitment, star power, and desire and capacity to fully comprehend the complex political and scientific realities of medical research have collaborated to make Reeve a forceful advocate for scientific research. He has engaged scientists in frequent discussions so that he can understand the mechanisms that underlie potential cutting-edge treatments for problems that range from neurodegenerative disorders to diabetes to spinal cord injuries. As a result, Reeve has become conversant at a high level about, for example, stem cell technology, therapeutic cloning, and the molecular biology of nerve growth. His insistence on understanding the science reinforces his credibility with researchers and renders his arguments particularly compelling.
Reeve prods and persuades lawmakers and the public with novel and forceful arguments that rouse people to action. Comparing the quest for finding a way to repair the spinal cord with the previously daunting task of landing a man on the moon, he maintains that we have conquered formidable challenges before. At the 1996 Democratic National Convention, he said, “So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable. If we can conquer outer space, we should be able to conquer inner space, too — the frontier of the brain, the central nervous system, and all the afflictions of the body that destroy so many lives and rob our country of so much potential.” Furthermore, he pointed out that investing in research is cost effective: The government spends billions of dollars to maintain Americans with spinal cord injuries, and only a fraction of that on research that would improve the quality of their lives, get them off public assistance, and possibly cure them. In 1998, Reeve lobbied congress to double the National Institutes of Health budget in five years, contributing to the growth of the agency’s budget from $12 billion in 1998 to more than $27 billion in 2003.
As a testament to Reeve’s dedication to improving the lives of people with all types of paralysis, the House and Senate introduced the Christopher Reeve Paralysis Act to honor his 50th birthday on September 25, 2002. Congress is currently considering the legislation, which aims to promote research that could lead to spinal cord regeneration and to build programs nationwide that will advance self-sufficiency and opportunities for individuals with paralysis and other physical disabilities.
Reeve has also worked at the state level, providing crucial support, for example, for the passage of the New York State Spinal Cord Injury Research Bill, landmark legislation that funnels funds collected from violations of motor vehicle laws to research facilities in New York. He helped lobby for similar bills in New Jersey, Kentucky, Virginia, and California. The fact that Reeve never blamed his horse for the accident inspired a philanthropist and horsewoman, Joan Irvine Smith, to create a research center in his name at the University of California, Irvine, dedicated to finding a cure for paralysis. The center raised matching funds from individuals and foundations to triple Smith’s $1 million donation. It is already conducting research, supported by state, federal, and private funds, and has developed a state-of-the-art core facility in which any scientist with a novel idea can immediately undertake experiments in well-developed animal models.
Reeve has tackled some of the most emotionally charged issues with graceful and moving arguments. In an essay for Time and in testimony before a Senate Subcommittee in 2000, he wrote about human embryonic stem cells: “In fertility clinics, women are given a choice of what to do with unused fertilized embryos: they can be discarded, donated to research, or frozen for future use — is it more ethical for a woman to donate unused embryos that will never become human beings, or to let them be tossed away as so much garbage when they could help save thousands of lives?” While the Senate was debating whether to lift the ban on NIH funding of research on human embryonic stem cells, Reeve wrote to all of the senators: “If your young child or grandchild became paralyzed because of a spinal cord injury, or brain damaged in an accident, would you be able to look him or her in the eye and say that research on the best hope for recovery is, in the words of Senator Brownback, ‘illegal, immoral, and unnecessary?'”
Knowing that even the most promising research endeavors will take time to gel into therapies, he is also toiling to help disabled individuals lead more fulfilling, productive, and independent lives. In addition to setting up the CRPF quality-of-life grants program, for example, he and Dana helped establish a national information clearinghouse for all issues related to paralysis.
Reeve has mobilized movie stars as well as politicians to advance the cause. He has recruited celebrity friends such as Robin Williams and Paul Newman to engage in fundraising efforts and other projects aimed at educating the public about spinal cord injuries, and has called upon numerous Hollywood stars to help make the PBS Series “Freedom: A History of Us,” in which the actors contributed their fees to CRPF. Corporate and foundation sponsors matched these donations, and the enterprise raised $100,000 for the organization.
Reeve has juggled these advocacy activities with the rest of his life, pursuing a rigorous rehabilitation regimen, taking part in family life, continuing to act, and embarking on new adventures. In early 2001, he began combining his directing career (which began a year after his accident) with his activism when he directed four commercials featuring Ray Romano, Randy Newman, Toni Morrison, and himself for Johnson & Johnson that attempted to help parents communicate with their children: “Tell your kids not to be discouraged in the face of adversity,” he said. “Tell them that their bad days are just good days in disguise.” Reeve has invited the public into his heart and mind through his two books about his experiences, Still Me and Nothing Is Impossible, and by participating in a television special that chronicles his personal struggles as well as his public ones. After the accident, he had sensation in 12 percent of his body; he has since regained feeling in an additional 58 percent, an achievement that doctors deem remarkable. Furthermore, Reeve is exploiting neural activity very far below the level of his injury. For example, he can now push off from a pool wall like a swimmer starting the backstroke. Until recently, he could breathe without the ventilator for only 90 minutes at most. Earlier this year, he underwent surgery intended eventually to wean him from the machine completely. He can now survive off of it for six or seven hours at a time.
Under profoundly compromising circumstances, Christopher Reeve fashioned a new role for himself by grabbing opportunity and spearheading an entire movement. He has demonstrated great courage in a truly bleak situation, finding a way to exert tremendous power even though his body has lost much of its vigor. No longer able to leap tall buildings in a single bound, he continues to vault seemingly insurmountable obstacles from physical rehabilitation centers to congressional chambers — and has transformed himself from one type of Superman into another.
by Evelyn Strauss