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capri0mni(Please note: the feelings I am expressing here have been filtered through the lens of my own experience. Some might say that lens brings things into sharper focus. Some might say it distorts. Since it is the only lens I have, I cannot say which is closer to the truth. My feelings are just as they are. I in no way mean to belittle the kindness, generousity and good intentiosns of others)
First and foremost: May he rest in peace. May his family and friends, who loved him deeply, find peace in that love that endures after death. He was a man of faith and conviction who had the courage to act, and keep acting (including, but not restricted to, acting in the theatrical sense), when many others woud have been just as happy hiding in a private corner, somewhere. And for that, he deserves the respect and thanks of us all ... ... ... (can you sense what's coming next?)
But...
It bothered me that (at least in the beginning) he put so much of his his star power and clout behind "finding The Cure," and so little into fighting for civil rights for the disabled.
I think I should back up, here, and give a little sample of some of that experience I talked about above:
Over the span of four years in the mid-to-late '70's (I think-- I started around the age of ten or so), I spent two weeks each summer at a summer camp for disabled kids, run and funded by the Children's Aid Society of New York. The cabin arrangements were segregated by type of disability; one boys' cabin and one girls' cabin paired together, and sharing a common front porch where we could socialize. Although some activities were conducted for all the campers together, most of the daily activities (eating, swimming lessons, art class, etc.) were done cabin by cabin. There were cabins for deaf kids, and cabins for blind kids, and cabins for mentally disabled kids, and cabins for kids who were "mobility impaired" (crutches and wheelchairs) -- some of whom were also deaf, blind, or mentally disabled.
If a kid was deaf and in a wheelchair, she stayed in the wheelchair cabin, not the cabin for deaf kids. If a kid was mentally handicapped and in a wheelchair, she stayed in the wheelchair cabin, not the cabin for mentally handicapped kids ...The wheelchair overrode every other factor.
---
And when Christopher Reeve became injured, then he and I were lumped together, too, in the eyes of the general culture, even though our two lives, and our two conditions, could not have been more different.
---
We tend to think of the days when the disabled were sterilized and locked away as being long behind us.
But as recently as this year, states have argued in the Supreme Court for their right exclude the disabled from public places, employment, and public life. And the votes have been close (If Bush gets four more years in office, and gets to appoint more "States' Rights" justices, I wouldn't be surprised to see ADA rolled back completely).
And just this last April, I was watching a show on PBS, all about adult stem cells, and saw a doctor, in his white coat of authority, say: "...I will be able to just say to somebody with a spinal cord injury, yes, you will walk again, as opposed to telling them life is good from a wheelchair."
Now, I don't wish other people to live in wheelchairs. I don't want anyone to have to worry about pressure sores, and fever, and water getting into their breathing tubes when they go to take a shower...
But what am I supposed to think when I hear that? That I'm only fooling myself when I think I have a good life?
What bothered me about Christopher Reeve's advocacy for spinal chord injury research was that, in the early years, it was all about complete cure -- that he would walk by his 50th birthday. Not a healthier life. Not a life of greater freedom or dignity. But a Cure...
Almost as soon as he started his advocacy campaign, I started to envision a future world where The Cure was found...for some people, with some disabilities... who could afford it. They could return to the world of "normal" people, would be allowed to get jobs, get married, raise kids. Businesses and governments wouldn't worry about making themselves accessible. The disabled could live in hospitals, after all, while they "recovered." The rest of us -- those who couldn't afford it, or for whom that particular therapy wouldn't work...it was a shame, but we'd have to stay in the instititutions. For the good of society as a whole, of course, so as not to be a burden on social services or government coffers.
---
My respect for Mr. Reeves soared, though, when he went back to work. He didn't wait for The Cure, and he didn't hide out of sight. He got in front of the camera, and he didn't try to hide his chair. He made us see him as he was, and earned our respect as a complete human being.
I'm just saddened that he didn't get more time to play that role.
Links
A guide to Disability Rights Laws
The Center for an Accessible Society: Disablility Issues Information
Innovation -Life, Inspired; "Miracle Cell" (you can get to the transcript via a link in the left column... scroll down)
First and foremost: May he rest in peace. May his family and friends, who loved him deeply, find peace in that love that endures after death. He was a man of faith and conviction who had the courage to act, and keep acting (including, but not restricted to, acting in the theatrical sense), when many others woud have been just as happy hiding in a private corner, somewhere. And for that, he deserves the respect and thanks of us all ... ... ... (can you sense what's coming next?)
But...
It bothered me that (at least in the beginning) he put so much of his his star power and clout behind "finding The Cure," and so little into fighting for civil rights for the disabled.
I think I should back up, here, and give a little sample of some of that experience I talked about above:
Over the span of four years in the mid-to-late '70's (I think-- I started around the age of ten or so), I spent two weeks each summer at a summer camp for disabled kids, run and funded by the Children's Aid Society of New York. The cabin arrangements were segregated by type of disability; one boys' cabin and one girls' cabin paired together, and sharing a common front porch where we could socialize. Although some activities were conducted for all the campers together, most of the daily activities (eating, swimming lessons, art class, etc.) were done cabin by cabin. There were cabins for deaf kids, and cabins for blind kids, and cabins for mentally disabled kids, and cabins for kids who were "mobility impaired" (crutches and wheelchairs) -- some of whom were also deaf, blind, or mentally disabled.
If a kid was deaf and in a wheelchair, she stayed in the wheelchair cabin, not the cabin for deaf kids. If a kid was mentally handicapped and in a wheelchair, she stayed in the wheelchair cabin, not the cabin for mentally handicapped kids ...The wheelchair overrode every other factor.
---
And when Christopher Reeve became injured, then he and I were lumped together, too, in the eyes of the general culture, even though our two lives, and our two conditions, could not have been more different.
---
We tend to think of the days when the disabled were sterilized and locked away as being long behind us.
But as recently as this year, states have argued in the Supreme Court for their right exclude the disabled from public places, employment, and public life. And the votes have been close (If Bush gets four more years in office, and gets to appoint more "States' Rights" justices, I wouldn't be surprised to see ADA rolled back completely).
And just this last April, I was watching a show on PBS, all about adult stem cells, and saw a doctor, in his white coat of authority, say: "...I will be able to just say to somebody with a spinal cord injury, yes, you will walk again, as opposed to telling them life is good from a wheelchair."
Now, I don't wish other people to live in wheelchairs. I don't want anyone to have to worry about pressure sores, and fever, and water getting into their breathing tubes when they go to take a shower...
But what am I supposed to think when I hear that? That I'm only fooling myself when I think I have a good life?
What bothered me about Christopher Reeve's advocacy for spinal chord injury research was that, in the early years, it was all about complete cure -- that he would walk by his 50th birthday. Not a healthier life. Not a life of greater freedom or dignity. But a Cure...
Almost as soon as he started his advocacy campaign, I started to envision a future world where The Cure was found...for some people, with some disabilities... who could afford it. They could return to the world of "normal" people, would be allowed to get jobs, get married, raise kids. Businesses and governments wouldn't worry about making themselves accessible. The disabled could live in hospitals, after all, while they "recovered." The rest of us -- those who couldn't afford it, or for whom that particular therapy wouldn't work...it was a shame, but we'd have to stay in the instititutions. For the good of society as a whole, of course, so as not to be a burden on social services or government coffers.
---
My respect for Mr. Reeves soared, though, when he went back to work. He didn't wait for The Cure, and he didn't hide out of sight. He got in front of the camera, and he didn't try to hide his chair. He made us see him as he was, and earned our respect as a complete human being.
I'm just saddened that he didn't get more time to play that role.
Links
A guide to Disability Rights Laws
The Center for an Accessible Society: Disablility Issues Information
Innovation -Life, Inspired; "Miracle Cell" (you can get to the transcript via a link in the left column... scroll down)
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no subject
Date: 2004-10-13 07:42 pm (UTC)no subject
Date: 2004-10-13 09:33 pm (UTC)The lastest term I heard in the Disability community is "TAB" (Temporarily Able-Bodied) ;-)
no subject
Date: 2004-10-14 04:06 am (UTC)LOL! That's good. I much prefer being called a TAB than being called normal. :-)
no subject
Date: 2004-10-13 07:44 pm (UTC)To be fair...
Date: 2004-10-13 09:27 pm (UTC)One minute, he was a movie star, and sports star, and "Superman." The next minute, he was completely helpless, and couldn't even breathe on his own.
Of course he wanted his old life back, just the way it was. Of course he wanted a cure.
Whereas I was born with my condition... I grew up with it, and it's shaped who I am and how I see the world. I called Dad earlier, to ask about the summer camp dates, and we got into a long discussion. And he said something to the effect of: "And with you? What's there to 'cure'? It's who you are!" And I like who I am.
If any blame is to be assigned (and I'm less certain of my rectitude than I was 9 years ago), I'd lay it more at the feet of the people who pounced on him to be an advocate, before he was even out of the hospital.
What bothers me more are comments like that doctor's. He's in the official position of "expert," to whom people turn for advice and support during the most traumatic times of their lives, and for him to have that attitude :::Shudder:::.
In that whole hour on the controversy of stem cells, the question of whether or not "cure" was the even best solution was never raised.
no subject
Date: 2004-10-14 01:04 am (UTC)*Nod
Date: 2004-10-14 09:24 am (UTC)The question is how we search, and how we talk about it, and what we expect from ourselves and our societies along the way.
I remember very clearly, early on in his advocacy, how Reeve made the case for funding SCI research: That one day, we will be rid of disability, and thus save money in the long term, because we won't have to pay for long-term care.
That's just not true. Those who live to be disabled are those who've touched the cusp between life and death, and survived (perhaps that's why the disabled tend to make us uncomfortable). The more people to survive, the more we'll have with disabilities.
I was the smallest baby to date to survive at the hospital where I was born, in 1964 (2 lbs, 14 oz at birth, dropped to 2.25 lbs the next day). My lungs were barely developed. Today, that's almost routine, and those children grow up without being disabled at all. But now, even younger premies are surviving -- born before their stomachs are fully formed, and who therefore have to be fed through tubes all their lives.
So yes: search for cures. Search long and hard and creatively. But don't expect there ever to be a world where life is no longer fragile.
no subject
Date: 2004-10-14 05:34 am (UTC)