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Christopher Reeve Does Toronto

The guest of honour for the Toronto Hospital's Spark of Life fundraising campaign for neuroscience research was none other than Christopher Reeve, an éminence whose stature and fame as a disabled person threaten to eclipse those of Helen Keller or FDR. Reeve's visit to a jam-packed cafeteria at Toronto Western Hospital on 4 September 1996 was a study in mixed reactions – exactly the message Reeve himself gives, but which no one seems to have picked up on.

First things first. Reeve's appearance was sparsely promoted, so the majority of the audience consisted of nurses and other hospital staff. Virtually no one was under 30, with the prominent exception of a young man, maybe 16, with dirty-blond hair who was wheeled in on a combination bed/wheelchair accompanied by his father and sister and a nurse who epitomized everything that is praiseworthy about that profession. People who are old hands at disability issues (comme moi) like to think they're completely cool about all manifestations of disability and that nothing fazes them, but I have to report a fair dose of therebutforthegraceofGodism pumping through my veins for the length of the show. This young man, wearing at least one plastic leg cast and a cervical collar, also had some kind of nasogastric tube crudely and conspicuously taped to his nose. A few hoses, of the sort ventilated quads use to breathe with, emanated from the back of his chair, but beyond a conventional air tank that didn't seem hooked up to anything, the apparatus didn't seem to have a purpose. He was breathing on his own, and what could be read from his nearly expressionless face was, in fact, a panoply of emotions quite familiar to me given my limited experience with quadriplegics just getting used to their new state. Ask me sometime about being 19 years old, still feeling at ease with all this crip stuff while in point of fact being totally green and immature, and given the task of demonstrating an Apple IIe to someone who had had the big smack to the cervical vertebrae only six months before. Nervous? You don't know from nervous.

And I pretty much stayed in that state throughout Reeve's presentation. I would have been fine if it hadn't been for the back of the blond man's chair. On the flap of what amounted to an antimacassar under his pillow trailing over the back of the chair was the word SPINAL hand-printed in marker. Upside-down, too, fittingly. I kept thinking about all the bicycling I do year-round. In everyday life, I usually stop myself from thinking about exactly what even a Nissan Micra or a Suzuki Katana motorcycle could do to me if I ever got into a crash. Sitting behind Spinal Boy was not an everyday-life experience. I am quite fluent in irony, but I realized again that the last thing I want to happen to me, after following and writing about disability issues for 18 years, is to end up disabled myself. Some ironies are rather too intense.

The president<slash>CEO of the Toronto Hospital opened the show (no applause) and introduced the current minister of health (no applause), an apparatchik of the Tory régime who copped to having watched Reeve at the Democratic National Convention and being moved by his plea to spend money now to cure disabled people rather than simply maintaining them. ("Merely being alive is not enough," the minister quoted Reeve as saying. How did Spinal Boy react to this? Whose life is it, anyway?)

The microphone, to that point stuck on a gooseneck on a five-foot podium, was then handed down to Rick Hansen (much applause), the Man in Motion himself, whom I had never, ever seen in person. What a deprived life I've led. Wheeling around the world will evidently do wonders for one's charisma, if Rick is any index. Although he is still saddled with the most heterosexual haircut this side of the Alberta minor-hockey draft pick, Rick radiates optimism and affability and did a fabulous job of off-the-cuff speaking, giving us a rundown of Reeve's films (not just Superman – either Rick is a closet cinéaste or he's been very well briefed) before turning over the platform to "an accomplished world-class actor."

A note on his entrance: As many quadriplegics will recognize, being on time is often a luxury that seems to have gotten left behind along with wiggling your toes in the morning, so it was no surprise that Reeve wheeled in for his noon speaking engagement at 12:17 on the dot with not merely a police escort but a security-guard, bureaucrat, nurse, and aide-de-camp escort. He drives the biggest wheelchair I have ever seen. An aide with a manual oxygen tank and two aides toting midsized trunks on wheels followed him to the stage. He's gained weight; this happens when exercise becomes merely a word you can spell rather than put into practice. Dressed in a green shirt (Oxford-cloth, logo indistinguishable at distance) and cream trousers, he looked pretty natural, and sounded even better.

The man can work a crowd. As many books on public speaking will tell you, standing stock still and taking your time to speak are effective strategies for focusing attention; Reeve doesn't just follow this advice, he lives it. After thanking the hosts for their encomiums ("You usually have to be about 80 to get that much time"), Reeve demonstrated the degree to which he is plugged into cosmic truth by describing how, despite having known various disabled people before his injury, upon reflection he came to realize he only conceived of them as Them. "We need to remember," he told the rapt audience, "that there is no 'them.' There is only us. Let's remember them and take care of our family."

His recollections were matter-of-fact (not atypical) and laced with humour (ditto). After "I did a pile-drive on my head" (flipping over his horse and smashing head-first into a rail), he was lucky enough to have found himself lying on Virginia soil handy some big hospitals. Paramedics got to him quickly and administered methylprednisolone – a drug that expands the blood vessels in the spinal column, thus reducing long-term damage. He was lucky enough to be close to a surgeon with first-class expertise. Had he been training at a more remote equestrian course, he might not have survived: "Virginia was definitely a good place to crash." Five years ago, Reeve said, someone who broke his neck at the C1-C2 level (the top two vertebrae) would likely not have survived, period. Reeve wants this sort of steady medical advance to continue, hence the need for fundraising. ($7 million of the Spark of Life campaign's $21 million goal had already been reached, we were earlier told. Isn't that like opening a bank account and finding there's already money in it? Not that I'm complaining.)

During his hospital and rehabilitation stays, close and distant relatives were constantly by his side, a fact that contributed markedly to his recovery. His wife commuted three hours a day to be with him, putting her own career on hold. He talked very little about his three children, but commended his medical staff and aides as part of his extended family. Their no-bullshit approach actually got him to the point where, despite what the recent Time story stated, Reeve can actually breathe on his own. (He used a ventilator during his visit, whose noises we quickly got used to.) This was rather surprising news given the site and severity of his injury. "At first I could only take enough breaths to keep a parakeet alive," he recalled, and that only happened because an orderly named Juice came in one day and simply told him, "We're taking off the hose." Now, Reeve says, he can breathe on his own for hours at a time.

His very natural off-the-cuff remarks ended after about 15 minutes, and the floor was opened up to Q&A. Someone wasn't afraid to ask a touchy question: Now that you're in a chair and on a ventilator, what poses the greatest fear? Reeve replied that, with his support systems around him, he was not worried about his body or his "stability," but was worried that funding for researchers won't be there when he and other persons with neurological impairments need it, which is now and tomorrow.

He's actually done some acting – in the forthcoming TV movie A Step Toward Tomorrow, he plays the role of a quadriplegic (surprise!) counselling a young man newly paralyzed whose parents later run out of insurance money, a fate he too faces. (What did Spinal Boy think?) The film was written after his accident in May 1995. "That's a nice indication that in popular culture they're starting to face issues they wouldn't have before," Reeve said. He means insurance exhaust more than disability, which has been very thoroughly covered in film, usually in a misguided, ill-informed, stereotypical, and damaging fashion. (See Lauri Klobas's Disability Drama in Television and Film and Martin Norden's The Cinema of Isolation: A History of Physical Disability in the Movies for an overly pessimistic and unforgiving but still quite accurate analysis.)

Having it both ways

Near the end of Q&A, a quad in a manual chair thanked him for "going out and breaking your neck for us." Reeve went along with the joke, but the truth is that he's now torn between two worlds (two dimensions, even), the interplay between which exposes some touchy issues in disability culture. Reeve has adapted pretty well to being a quadriplegic; having money and an extended family, not to mention the right frame of mind, have helped. But Reeve wants funding for neuroscience research to cure paralysis and "get us out of these chairs." He says it not with the undertone of bitterness that characterizes, say, Hollywood movies or the likes of Jocelyn Lovell, but with equanimity.

Problem is, many disabled people aren't all that interested in being cured, or if they are, they feel constrained from saying so (a) because it seems like an impossible dream and (b) because part of getting on with your life is accepting your disability at some day-to-day level. Some disabled athletes, who admittedly are the crème-de-la-crème of the crip community in the minds of many people, will tell you that getting run over or losing a leg or whatever was the best thing that ever happened to them. Rick Hansen wouldn't have traveled around the world if he hadn't broken his back, his autobiography tells us.

C1-C2 quadriplegics rarely walk again, and while that may change with the help of the money Reeve is raising, implanting the idea in average people's minds that disability can and should and will be cured leaves a lot of disabled persons in a never-never land. It's bad enough that people equate disability with wheelchairs when estimates place the number of wheelchair users at a mere 2% of the population. An emphasis on "wheelchair access" and the use of that dorky wheelchair logo to symbolize access of all kinds also contribute to a near-total ignorance of information access issues deeply relevant to blind or deaf people, just to draw an example. Many disabilities, including some increasingly rare forms of deafness, also spina bifida and birth defects, are congenital and permanent. While we're waiting for geneticists to identify all the genes responsible for these conditions so that pro-choice activists can push for women's inviolable right to keep disabled babies from coming into the world at all ever again and for scientists to come up with better and better cyborg-like devices like cochlear implants to mask the overt effects of disability, it has to be stated that not everyone is all that thrilled with being told they should agitate for a cure. But if push came to shove, I doubt many people in wheelchairs today would actually turn down being able to walk again. Hence the contradiction, one Reeve embodies.

But disability is complicated. Throughout Reeve's appearance at Toronto Western Hospital, I thought that I was the only one not doing a good job of hiding the fact that I was simultaneously blasé and discomfited. I was only blasé because I'm used to discussions of disability issues and, I have to admit, I was only discomfited also because I'm used to discussions of disability issues, but mostly in the abstract. I never really had an opinion on the issue of curing crips before today, and I'm not sure I want to form one. On the whole, most adults would not choose to be disabled; most disabled adults, however, might choose to have their disabilities eradicated if the offer were made under the right conditions. What this means is that people of my generation may be the last to know any disabled people at all; what everyone else will be left with are the photos and news clippings in Christopher Reeve's scrapbook that he'll dig out and show us after winning a medal in dressage in the 2004 Olympics.