WHAT'S IT GONNA TAKE?

ur current most famous disabled person thought of killing himself when he found out he'd be gimped up for the rest of his life.

"Reeve briefly thought of suicide." That was in a headline about the Christopher Reeve-Barbara Walters 20/20 interview back September a year ago, about 6 months after he got gimped up. He thought living "wasn't worth everybody's trouble," he told Barbara.

Why are the two men who can at the moment most easily attract media attention Christopher Reeve and Jack Kevorkian? Could it be that currently the media is framing disability issues as 'cure 'em or kill 'em?' Disability historian Paul Longmore

None of this surprised me. What interested me wasn't so much that he said it, but, that of all the things the guy said, this is what got the headlines.

A year later Reeve's Early Suicidal Thoughts were still trotted out like a juicy bit of gossip: "Reeve confessed that, for a few dark moments at the University of Virginia Medical Center in Charlottesville, he had wondered whether it would be better to die."

I can't say I was surprised, though. It's what people expect to read about someone as gimped up as Reeve, especially in these Kevorkian times. Over a year later, Time Magazine's Roger Rosenblatt asks him once again to talk about those early suicidal thoughts. And Reeve says, "When they told me what my condition was, I felt that I was no longer a human being. . . Maybe this just isn't worth it. Maybe I should just check out."

I've made sort of a project of Christopher Reeve. Tried to pay attention. Read a lot of the stuff in the tabloids, in the magazines. And there's been a lot of it. He's our current most famous gimp. He's like Roosevelt was, except then nobody who liked him would admit he was a gimp. Times change.

Folks who think all cripples want to kill themselves may have a point, if they get that idea from where I get it, which is looking at the newspapers and the magazines and wandering around on the 'net.

I got so I started looking for Reeve suicide stuff. What I noticed was that when the story went on, the suicide stuff was usually tied to something else: being dependent, being out of control.

noticed right off how Reeve apologized all the time. He didn't want to "be a burden." He didn't want to "make a full-time nurse of" his wife. He didn't want to cause anyone any problems.

The suicide stuff died off after awhile, but this worrying about being a burden persisted. A year later he's telling Roger Rosenblatt, the Time Magazine writer, that he always feels a need to apologize to people who help him. "I felt embarrassed for having failed," he said.

Another thing I noticed was how much of his embarrassment was tied to bathroom stuff.

"One of my humiliations is that my bed is also my bathroom," he told Rosenblatt.

He went on, "Having a nurse do everything for you is hard. I feel I'm always imposing. I find myself saying, 'I'm sorry I have dry skin . . . I'm sorry but my nose is running. . . '"

Reeve told Rosenblatt he hated the feelings of helplessness. "I've never been helpless," he said.

"If people were mad at me or in a lousy mood or whatever and they went away or didn't want to clean me or didn't want to put me in a bed or get me out of a bed, there'd be nothing I could do about it."

I have no doubt that this really is how you feel when you're a new quad. I know a whole lot of gimps feel this way all the time.

Nobody, of course, seemed to ask the obvious questions about those things. Like so many people, Reeve seemed to bring up the right problem but then hit on the wrong solution. If this is the problem, people think, the solution is to be cured. Not getting better attitudes about having help. Not having a good system of attendants. It never occurs to anyone that this is stuff that you really ought to be able to do something about. No, everybody just accepts that there's nothing you can do about this stuff except -- get cured.

Once the suicide thing quit playing in the news, we got onto the cure stuff. That got set up in the usual way, with the Comeback Gimp stories, the "He- Will-Not-Be-Broken" stuff. (That was the actual headline for People Magazine's big story last April that trotted out Chris's Cure Message.) "Chris loved showing people that he's back," agent Scott Henderson told People. This was about his big debut at the Academy Awards last year, as clearly orchestrated an event for Reeve's Return as there could be.

Don't think "He Will Not Be Broken" was just People Magazine's idea. "He has no time for self pity": That was the message, and we all got it in a thousand ways: on TV, online, from the mags and the rags. Here was a man who, as they put it in that second People story, had been one to urge Hollywood to "take risks and tackle social issues." With this reminder were being set up: it was time for Chris Reeve's greatest issue, his next act: Pushing For The Cure.

Sure, Reeve's brought attention to cure. Hundreds of articles, new foundations, a few cool millions plopped down for cure right away. Katie Couric does a week-long series on the Today show about cure. A bill gets introduced in Congress. Reeve gets to speak at the Democratic convention to plug research for The Cure. . . .Time, Newsweek, and all the others get in on the story.

ome gimps I know say, "give Chris Reeve a break! He's new to gimpdom. He doesn't realize there's more than Cure out there." These gimps want to believe that after Reeve's been a gimp for a few years, he'll get on to disability rights; he'll speak out on the importance of access, attendant services, all that.

But I don't buy that. I think Reeve knows exactly what he's doing. He knows you can't talk about cure on the one hand and access on the other; he knows people see them as contradictory. He was drawn to the American Paralysis Association, he said, because "they are dedicated solely to finding a cure for paralysis, nothing less. I liked that idea," Reeve went on. "They're not into lower sidewalks and better wheelchairs."

On Chris Reeve's performance at the Democratic Convention: Until Christopher Reeve admits he is "permanently" one of us (right now he thinks he has a temporary disability), he will find it useful, in order to maintain his "status," to ignore the rest of us. After all, doesn't it take many at least a decade to "come out disabled?" And those are folks who don't make $50,000 a pop talking about cure, or get a $3 million advance for an autobiography on "overcoming." No, it is [President] Clinton who has to be asked some tough questions, like: if his child were to become disabled, how long would he ask her to wait for the cure? Or would he want her to have quality of life, while she is alive? Wouldn't he want her included in every aspect of society? I am not personally anti medical research, but I believe that much of it serves to sustain the process of research, rather than to come up with a "product" that will enhance our quality of life. -- online message from retired university professor Marilynn J. Phillips, Ph.D.

It being Reeve, he of course got attention. Every television show wanted an interview. When he went up to Capitol Hill to harangue Congress for cure money, the story ran in all the papers the next day.

Like the trained actor he is, Reeve used that "lower sidewalks" line over and over. To New Mobility's Sam Maddox: "I'm not that interested in lower sidewalks and better wheelchairs. It's nice to have good equipment and access while you're disabled but I think all of us with these problems should be allowed to regard them as a temporary setback rather than a way of life."

Yeah. Read that last part again: "All of us with these problems should be allowed to regard them as a temporary setback rather than a way of life."

Reeve said in interviews he felt optimistic: "The politicians are motivated, the public is showing concern, and everything is prepared to push to a successful conclusion."

It'd be nice if that were being said about enforcement of our civil rights with the Americans with Disabilities Act. But it's not being said about that. It's being said about cure, something that most of us won't get even if Reeve gets his money and his research and his cure.

Chris Reeve won't have too many problems with rights or access. He's like Roosevelt that way. The Secret Service helped President Roosevelt up and down steps unobtrusively. Ramps were built so his car could drive up them. The next day they were quietly dismantled. (Ever wonder what Washington might be like today if they'd just kept those ramps?)

With a $3 million advance from Random House to do a book, and getting $50,000 a pop for speaking gigs (one of the most in-demand speakers ever, Reeve got the Democrats' convention gig because their pollsters named him the one celeb most folk wanted to hear), Reeve is better insulated than most gimps from life on the streets. So it seemed kinda funny when he bitched about his insurance's $1.5 million cap -- and it made me wonder why he woke up about that but not about all the "care" stuff. But it's true, like my friends say. When it comes to political action for things like personal care (attendants, which he insists on calling 'nurses'), Chris Reeve still ain't politicized.

Yeah, he sees it costs money. That's what his insurance beef's about. But he doesn't seem to see it as anything to organize over, like he does for cure.

All the things I see about Reeve's lifestyle keep mentioning the "24-hour medical care and rehabilitation which costs an estimated $400,000 a year." I read about "aides that lift him, 24-hour-a-day nurses, expensive drugs and checkups by various specialist physicians." I read about the "capital costs of equipment or of turning his garage into a gym for his therapies."

But this stuff isn't brought up so we see how quads need the system to change. No, Reeve trots it out to show how quads need cure: if a cure's found, then all that money for "24-hour nursing" won't have to be spent.

Ramp-O-Rama! WHO'S RIDING IN THAT CHAIR, ANYWAY? In her Oct. 31 New York Times article on Reeve's debut as a director, reporter Lawrie Mifflin calls Reeve's wheelchair a "hospital chair." Later in the article, she quotes actress Glenn Close, whom Reeve's directing in an HBO movie: " ... to see him overcoming his chair was a constant source of amazement. I was moved by it, every day."

Reeve's Push for Cure is full of nutty lopsided stuff like that; stuff that misses the big points that are right there in front of your nose if you start thinking about them. Things like the fact that not everybody is going to be "cured" right away. That people need "care" for being old and gimped up with arthritis. That they need help because they've got brain injuries. Or were gimped up from thalidomide. All that stuff.

But that complicates things, and Reeve knows he's gotta keep it focused on cure to get attention.

From magazine articles: "Whenever I leave the house it's a huge operation. I have the nurses. The van has to be equipped with an oxygen tank, emergency meds . . . ."

"There's nothing that's easy; everything's a struggle," says his wife. It's people's "compassion," their "goodwill," says Reeve: that's what makes them willing to help him.

"Nobody has to do any of those things; I'm completely dependent on them," he tells Rosenblatt. "And I feel the same thing about working in the political arena," he goes on. "Nobody has to come up with more money or basically give a damn about people who are in dire straits or suffering."

When I read this I begin to get an insight into why Chris Reeve can organize for cure but not for access. I begin to draw a bead on why he doesn't think much of things like "lower sidewalks" or that whole group of stuff we call "disability rights".

Chris Reeve is talking to Roger Rosenblatt about a way to help the people who take care of him, to "remove their fear, to make them feel safe to care."

And I think I begin to understand how he thinks of things. It's natural, I think. People do see cure as the only way to remove the fear.

But there is another way. When you understand what's going on for gimps all over, you see that this other way makes more sense. But very few people talk about this other way, or even understand it. My Reeve watching project has convinced me nobody that covers him gets much of an insight into it.

Gimps in the disability rights movement have talked a lot about all this stuff. I think they have a lot of answers Reeve is really looking for. But he doesn't know he's looking for their answers. He thinks he's looking for cure. He thinks a cure will solve all this mess.

That's too bad -- for all of us.

Pat Williams is a freelance writer.