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capriuniThis is a repost from of an entry I orginally wrote in my LiveJournal, October 13, 2004 ("The Days of Yore," in Internet Years), so I offer no promises that all of the links at the end will still work.
I started thinking about this post again, yesterday -- specifically the paragraph I've put in boldface -- the one that starts: "Almost as soon as he started his advocacy campaign, I started to envision a future world ..."
Because, lo and behold, thanks to Script Frenzy, I'm now working to write my vision of that alternate world.
(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 couse, 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)
Footnote, Afterword, Post Script, What-you-may-call-it:
Here's a link to Christopher Reeve's Speech at the 1996 Democratic National Convention (Full Transcript found at the official Christopher Reeve Homepage).
This is the specific passage that gave me the willies, and planted the seed in my head of a dystopian world that claimed to have cured all Mankind's ills:
Alzheimer's, stroke, Parkinson's, and multiple sclerosis (among many other diseases and conditions) are all difficult to live with, and sometimes painful. It's not the call for research for cures that bothers me.
What bothers me is the pairing of National Strength with Bodily Health, all tied up in a great big shiny bow made of airplanes, ships and guns. It's the machismo of the whole thing, with "The Disabled" forced into the role of "Perpetual Burden," because our presence in the family portrait sullies the Superman persona America wishes it could embody.
And as much as I want this current version of the Health Care Reform to pass (Which was the main thrust of Reeve's speech, back then), this shadow side of the debate still bothers me.
---
Oh, and if you want to have fun with your Disability!Inspiration Bingo Cards, check out the Tributes page on Christopher Reeve's Homepage...
*facepalm*
(oh, and sorry for the weird posting of this about 3 hours ago. I accidently hit "Enter" when I meant to hit "Shift" So the thing posted before I'd even written my first sentence.... argh.
I started thinking about this post again, yesterday -- specifically the paragraph I've put in boldface -- the one that starts: "Almost as soon as he started his advocacy campaign, I started to envision a future world ..."
Because, lo and behold, thanks to Script Frenzy, I'm now working to write my vision of that alternate world.
(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 couse, 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)
Footnote, Afterword, Post Script, What-you-may-call-it:
Here's a link to Christopher Reeve's Speech at the 1996 Democratic National Convention (Full Transcript found at the official Christopher Reeve Homepage).
This is the specific passage that gave me the willies, and planted the seed in my head of a dystopian world that claimed to have cured all Mankind's ills:
(Quote)
Research can provide hope for people who suffer from Alzheimer's. We have already discovered the gene that causes it. Research can provide hope for people like Muhammed Ali and the Reverend Billy Graham, who suffer from Parkinson's. Research can provide hope for Americans like Kirk Douglas, who suffer from stroke. We can ease the pain of people like Barbara Jordan, who battled multiple sclerosis. We can find treatments for people like Elizabeth Glaser, whom we lost to AIDS. And now that we know that (nerves in) the spinal cord can regenerate, we are on the way to getting millions of people around the world, millions of people around the world like me, up and out of these wheelchairs.
Now, 56 years ago, F.D.R. dedicated new buildings for the National Institutes of Health. He said that, "The defense this nation seeks involves a great deal more than building airplanes, ships, guns, and bombs. We cannot be a strong nation unless we are a healthy nation."
(Unquote)
Alzheimer's, stroke, Parkinson's, and multiple sclerosis (among many other diseases and conditions) are all difficult to live with, and sometimes painful. It's not the call for research for cures that bothers me.
What bothers me is the pairing of National Strength with Bodily Health, all tied up in a great big shiny bow made of airplanes, ships and guns. It's the machismo of the whole thing, with "The Disabled" forced into the role of "Perpetual Burden," because our presence in the family portrait sullies the Superman persona America wishes it could embody.
And as much as I want this current version of the Health Care Reform to pass (Which was the main thrust of Reeve's speech, back then), this shadow side of the debate still bothers me.
---
Oh, and if you want to have fun with your Disability!Inspiration Bingo Cards, check out the Tributes page on Christopher Reeve's Homepage...
*facepalm*
(oh, and sorry for the weird posting of this about 3 hours ago. I accidently hit "Enter" when I meant to hit "Shift" So the thing posted before I'd even written my first sentence.... argh.
no subject
Date: 2010-03-13 06:23 pm (UTC)Have you read Harriet McBryde Johnson's Accidents of Nature? It's a nominally-YA book about a "special kids" camp, where one of the wheelchair kids finds community with folks in other cabins.
HMJ was a hero of mine, and her narrative of that same Democratic Convention was both politically astute and bed-wetting funny—you can read it in her nominally-for-adults essay collection Too Late to Die Young
no subject
Date: 2010-03-13 10:32 pm (UTC)Well, my vision of the dystopian world has softened a bit in these intervening 14 years. I guess my middle aged self is a lot mellower than my youthful self (though at 32, I was hardly adolescent, any more). This is what I wrote in my notebook for this story, the other day:
"The staff of the Home believe (or act as if they believe, if they want to keep their jobs) that all of the children in The Home are "curable," with enough hard work -- that they can be "made normal." And if they can't ... it's best for all concerned if they be kept hidden -- to protect them from the cruelty of other people's biases, and to protect society from the "Social Chaos" that would arise if the public were forced to deal with "the Burden of the Infirm." So the atmosphere inside the the Home is not one of cruelty or mean-spiritedness, but rather, absurdity and unfairness."