Christopher Reeve’s fiftieth birthday has come and gone and the Man of Steel remains permanently seated. This is no surprise to me and I suspect it comes as no shock to him either. The date is remarkable only because shortly after he was thrown headfirst from his horse seven years ago, Reeve vowed that his potent mix of celebrity, political clout, and the effect of these factors on increased research funding would lift him from his wheelchair by September 25, 2002. I do not doubt his resolve. Nor do I question his motivation. Without question, Reeve is a ubiquitous and controversial figure in the world of disability politics. Say what you will about his quest for a cure, it’s his ubiquity that we all should admire. The guy is everywhere, and he’s got the media playing by his rules, which benefits the cause of people with disabilities everywhere.
It’s easy to criticize Chris Reeve, and many do. In a nutshell: he’s got it easy up in Westchester County in a customized accessible home with round-the-clock care that, according to Reuters, clocks in at $420,100 each year. His Hollywood buddies help him raise oodles of cash and lobby Congress to boost research dollars. His research buddies and cutting edge doctors are vying for Reeve’s attention to try a variety of new land and water-based therapies. And many believe he doesn’t do enough to help the Average Joe with a disability just live better day to day.
What Reeve is best at is marketing Christopher Reeve. I can think of very few things as filled with irony and melodrama as a strapping Hollywood superhero stilled in the prime of his life and now strapped to a sip-and-puff chair, carefully timing the beats of his respirator to all but eliminate pauses in his speech. His is a powerful presence and Reeve knows this best of all. In fact, he sells it: to Congress, to paying guests at fund-raisers, to the viewing public with every Barbara Walters interview, and to book buyers who view his pre-paralyzed physique and curly locks on the slipcovers of his books. And while some may view this as crass, I thank the guy for it. He is a constant reminder to all, not only
of what could be, but of the challenges people with severe and visible disabilities face each day. Reeve isn’t banking on pity. Instead it’s a more complex and confrontational challenge that invites us into his world. This demands a comparison to his pre-accident self, which is a story of death, rebirth, and redefinition death of movement, freedom, independence; and a re-creation of relationships, mission, and purpose.
All of these elements were present in the recently broadcast ABC television special, Courageous Steps, directed by Reeve’s 22-year-old son, Matt. I marveled not at his newly recovered, albeit limited, movements and medical breakthroughs, but at the fleeting moments of intimacy and sadness. Without words, the sight of him being lifted by three men from bed to wheelchair, and the discomfort evident on his face as it happened, was commonplace for him, but revealing to those unfamiliar with such basic needs. I was also struck by his continued loss of hair, and his need to comment on it (it’s caused by medication), and the fact that he just plain looked old (which drew no comment or explanation).
Most powerful was the reaction of Reeve when he failed his diaphragm test designed to measure whether any of the necessary muscles, needed to free him of his ventilator and the 24-hour watch of a hired hand that accompanies it, were firing it was gut-wrenching. As much as Reeve wants to walk, it is the ventilator that is his albatross, and this brief, awkward interaction with his doctor made public his failure. Despite all the hype of Reeve’s unprecedented physical advances and his enduring strength of spirit, at the end of the day Reeve goes to bed tethered to an air hose that gives him life, and he hates it. Taken alone, this snippet of reality is the stuff of living with a disability at one point or another.
Whether you’re fighting for the cure or fighting against it because having a disability is an integral part of who you are, there are those moments that creep up on you when limitation, failure, or lack of independence is just too much to bear. These moments are mostly hidden, tucked away and private. I did not envy Reeve’s sadness at this moment, but I do credit his son for sharing it with America.
The marketing of Christopher Reeve will continue, and it will be equal parts inspiration and revelation. He will continue to be a lightning rod for a number of moral and political constituencies and evolve as an activist and advocate. I am thankful that as time has passed, Reeve has shared more of his challenges as well as his triumphs. His continued media presence in print, on film and the small screen gives us opportunities to both educate and debate our colleagues and friends, regardless of disability status, and defend our side of the philosophical divide as to whether he is friend, foe, or both. In my mind, such ubiquity ain’t a bad thing.
