Superman meets D. R. Nation

Christopher Reeve on disability show plugs N.O.D., talks cure

Perhaps Christopher Reeve's PR firm realizes it's not good for the Man of Steel to appear to be insensitive even to the activist wing that's not looking for hope of a cure. They contacted Greg Smith, host of the syndicated disability talk radio show "On A Roll" to schedule Reeve for a slot on the June 7 program. They were concerned, Smith said, "that activists would call in and blast Chris. I assured him that I wanted this to be a bridge-building opportunity."

Reeve was recently named Vice Chairman of the National Organization on Disability, a point he raised more than once on the June 7 broadcast. Reeve's appearance was conditioned on the fact that NOD chair Alan Reich also be on the air for a few minutes to plug the NOD and its projects.

"Personally, I believe for right now, and perhaps forever, Chris will be focused on cure," Smith told Ragged Edge. "But I think he'll shift some of that media spotlight on the true disability experience, on disability rights, legislative issues and things that matter to the lives of all people with disabilities.

"Activists have 'flamed' me on the Internet for even having Reeve on the show," Smith told us. "But I think some people are too impatient. He's only been a crip for three years."

The line was open to callers on June 7, but Smith asked Reeve a number of questions, too, including some that had long been on activists' minds.

A movie idea

Smith: "Chris, your book starts out with a movie idea you had shortly after your accident where a man recently injured dreams of sailing at night [and for awhile] that becomes the man's chosen reality. But he soon decides to rejoin his new life in the world of disability with his family. And in the dream he gives away his boat, never to sail again. And I thought that was really nice, and I have an idea for a sequel to that movie. Want to hear it?"

Reeve: "Sure. Go ahead."

Smith: "All right. The man is a famous actor, he focuses the media spotlight he gets on a cure for spinal cord injuries, but he hears rumblings of discontent from grassroots disability community leaders and uh, it starts to bother him a little bit, so he puts on a disguise and he establishes an identity as a regular guy with a disability. And he becomes amazed at what he experiences, and, after several months, he resurfaces as the famous actor, kind of like the disabled version of 'Black Like Me.' Whaddya think?"

Reeve: "Well, I, uh, don't really see how those two things go together..."

What are you doing for crips?

Smith: "I gotta tell you, when I announced that you were gonna be on the show, I was met with a lot of varying opinions on me just for having you on. And a lot of people feel like, because of your focus strictly on cure, with all the media attention that you get, that you're ignoring the larger segment of the disabled community, which is people who don't have spinal cord injuries. I want to talk a little about what you're doing in terms of quality of life issues for people with disabilities."

Reeve: "Well, again, I've said, I'm the vice chairman of the National Organization on Disability, which covers all these issues - not just people in wheelchairs but people with spina bifida; people with M.S., people with, you know, really bad Parkinson's or degenerative diseases - the whole gamut - Guillian-Barré, you know - so just because I have a spinal cord injury it's inaccurate to say that I'm turning my back on people with other disabilities...."

Brian (caller from Philadelphia): "How do you respond to the criticism that's been floating around the disability community that you're not really representing the entire community?"

Reeve: "I hope you've been listening .... I'm the Vice Chairman of the National Organization on Disability which covers the whole spectrum of the disabled, also I'm the president of the Christopher Reeve Foundation and 30 percent of the money we take in we give to, uh, groups, um, to enhance the quality of life - maybe get somebody a van who can't afford it, to get somebody another chair - so that's very much a part of what we do as well. People just are not as informed because, you know, I started out as a newly injured quadriplegic, I started out with research and the reason I did that is because the research is now so promising - I mean in 1945 if somebody'd said that we would put a man on the moon no one would've believed it; if somebody'd told Shakespeare that one day we'd be flying on an airplane we wouldn't have believed it. There are many people who don't believe that there can be a cure or, really, improved function for them, so, you know, I started with that. But I'm doing it as well as dealing with, you know, issues in our cities and our communities that affect our day-to-day living.

"So people have gotta understand that I'm not just focusing on one aspect of it here, but the research is very very promising now and you know I have to say to be quite honest is that if you ask, 'do I want to be in a chair or out of it?' the answer is 'out of the chair,' you know, and that's my personal view, and if other people have other views they're more than entitled to them; you know, I'm an individual with my own beliefs and my belief is that, with enough funding, the way the research is going right now, that it will be possible for even those of us with high-level injuries to have significant recovery and possibly to walk within the next 5 to 7 years and that's based on fact, not on fantasy."

Smith: "Chris, I've had my disability all my life; it's been pretty severe, and I never really got immersed into the disability community until I started this radio show 5 years ago. But all throughout my life I've had "crip buddies," you know, people with disabilities that I could relate to on a level that other people who did not have disabilities couldn't relate to. Do you have any crip buddies? And I say that with love, the word 'crip.' "

Reeve: "Yeah, I understand. I have a friend that I made in rehab, my friend Henry, and some others that I talk to from time to time, but basically, I'm living as normal a life as possible and I concentrate on my family, I concentrate on my work, and um, I find that, you know, I get a bigger boost out of knowing, uh, [that] I can call up a scientist on the cutting-edge of research and say, 'what are you doing right now?' and, you know, get encouragement that way, because I really do see that there is light at the end of the tunnel and a way out of this, you know, my particular condition - although, speaking of your condition, I'm not sure if you're completely up on all the research but there are projections now that there will be ... mylenation of nerves in M.S. in the next couple of years if the financing continues."

Smith: "Well my condition's muscular dystrophy, and I've been hearing all my life [about cure] ..."

To order a cassette tape of Greg Smith's June 7 interview with Christopher Reeve, go to the On A Roll website or send $15 to: On ARoll CRTape, PO Box 599, Yellow Springs, OH 45387.

Reeve on MiCasa

Smith: "There's a bill out right now called the community attendant services act .... [It's] to pay for home and community-based services for attendants, instead of only paying for nursing homes. Are you familiar with that? Can you put your name on a list of endorsers for that?"

Reeve: "Well, I have always called nursing homes 'permanent parking garages' because, uh, not enough is done to be pro-active with patients. ... I've seen people and the look in their eyes and they've lost hope they've stopped eating properly and they sort of get parked there and I think that that's too bad and I think the home environment is always much more psychologically conducive to health than the nursing home environment and I would certainly support that. The main thing is, whoever comes in to your home to help you out, uh, it really needs to be a qualified person ...."

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