A worthwhile post on disability from ![[profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
moggymania
Apr. 25th, 2006 09:32 pmconuly
http://twinklelittlestar.typepad.com/letter/2006/04/a_tough_disabil.html
Go read.
While we're on the subject, an article about disability and the Holocaust.
Wheelchair Unbound
By HARRIET McBRYDE JOHNSON
I'm at the United States Holocaust Memorial Museum in Washington, touring an exhibition: "Deadly Medicine: Creating the Master Race." Tomorrow evening I will be interviewed onstage by a museum official. In a sense, that will make me a temporary display, an object of interpretation, a body in a wheelchair, a body so pared down and twisted up by a genetic neuromuscular disability that it doesn't need a nearby Nazi to get a reaction. In another sense, I will be an interpreter, talking from experience as a disability rights lawyer and activist.
The exhibit tells of a eugenics movement that sought to apply principles from Darwin and animal husbandry to humans. In Germany, it proceeded step by step from voluntary "healthy baby" campaigns to forced sterilization and the murder of some 200,000 disabled children and adults.
Looking at the photos of doomed children, I see my old crowd. They could be us. In "special" schools and camps for children with physical and mental disabilities, we grew up knowing we were a category of person that the world did not want. Most of us had a story of some doctor advising our parents to put us away or to let us die. We owed our survival to parents who had irrationally bonded with us, who held old-fashioned notions of right and wrong. We knew we were lucky and hoped our luck would hold. To increase the odds, we tended to be charming. We developed thick skins.
My skin is thick enough now to let me wind through the exhibit without weeping, almost without trembling. I roll onto the tile floor meant to resemble those in the gas chambers that the Nazis designed for the "humane" killing of disabled patients. I see a photo of a girl who was once held dear by someone who put a bow in her hair but could not protect her.
Then I see the wheelchair. It's similar to other prewar wheelchairs I've seen, but there's something unusual about the frame. Is this a tilting mechanism? A fancy suspension system? Looks like fine German engineering. I like vintage wheelchairs. An obsolete Everest & Jennings drive belt hangs in my office as a bit of nostalgia, like an old wagon wheel in a barbecue shack. I have an urge to jostle the chair, to see what that frame does. The sign mentions a German institution. So, no single owner. But even in institutions, people manage to bond with chairs. A state-owned chair may be occupied by the same person every day, parked beside that person's bed at night. Maybe the chair was used by someone with cerebral palsy until he died, then someone with a stroke until he died, and on down the line, until.. . .until they all died?
The people who used this wood-and-metal survivor probably loved it, liked to move about even as they were sucked into the nightmare. The nightmare began when the state removed them from their families, concentrated them in institutions. The same state provided them with beautifully engineered chairs and then killed them for eating up the resources of the "fit."
I pull myself away and try to absorb the rest of the exhibit. It tells how the eugenics dragnet widened, of the way concentration strategies, gas-chamber technology and sterilization techniques first designed for disabled people were applied against whole populations defined as genetically undesirable.
By the time I roll onto the stage the next night, I've thought a lot about there and here, then and now. When the first question comes, I tell them about my fascination with the wheelchair, and somehow it sounds funny, and laughter fills the room. We shuttle between the tragedy of Germany then to the comedy of here now, from the horror of bureaucratic killing to a funny confession that I, too, tend to stare at disabled people on the street. Before I know it, I'm giving them a real show.
What has come over me? Part of it is surely the tendency to compartmentalize. But there's more. In this room, people with disabilities in thrilling variety make me feel at home. It's like the disability ghetto of my childhood, but so much better. That was a community of exclusion, created by nondisabled people who considered us unfit. This is a community of inclusion. Here people, disabled and not, are gathered by choice.
I haven't forgotten that two million people remain in U.S. disability institutions, that some disabled children still cannot attend mainstream schools, that too many of us live in poverty. But I can't hold onto anger and sorrow in this room. It is too full of life. Behind the laughs I keep getting, I feel a shared sense of possibility, a drive for a world that will embrace both the fit and the unfit and hold them so dear that the categories die.
Go read.
While we're on the subject, an article about disability and the Holocaust.
Wheelchair Unbound
By HARRIET McBRYDE JOHNSON
I'm at the United States Holocaust Memorial Museum in Washington, touring an exhibition: "Deadly Medicine: Creating the Master Race." Tomorrow evening I will be interviewed onstage by a museum official. In a sense, that will make me a temporary display, an object of interpretation, a body in a wheelchair, a body so pared down and twisted up by a genetic neuromuscular disability that it doesn't need a nearby Nazi to get a reaction. In another sense, I will be an interpreter, talking from experience as a disability rights lawyer and activist.
The exhibit tells of a eugenics movement that sought to apply principles from Darwin and animal husbandry to humans. In Germany, it proceeded step by step from voluntary "healthy baby" campaigns to forced sterilization and the murder of some 200,000 disabled children and adults.
Looking at the photos of doomed children, I see my old crowd. They could be us. In "special" schools and camps for children with physical and mental disabilities, we grew up knowing we were a category of person that the world did not want. Most of us had a story of some doctor advising our parents to put us away or to let us die. We owed our survival to parents who had irrationally bonded with us, who held old-fashioned notions of right and wrong. We knew we were lucky and hoped our luck would hold. To increase the odds, we tended to be charming. We developed thick skins.
My skin is thick enough now to let me wind through the exhibit without weeping, almost without trembling. I roll onto the tile floor meant to resemble those in the gas chambers that the Nazis designed for the "humane" killing of disabled patients. I see a photo of a girl who was once held dear by someone who put a bow in her hair but could not protect her.
Then I see the wheelchair. It's similar to other prewar wheelchairs I've seen, but there's something unusual about the frame. Is this a tilting mechanism? A fancy suspension system? Looks like fine German engineering. I like vintage wheelchairs. An obsolete Everest & Jennings drive belt hangs in my office as a bit of nostalgia, like an old wagon wheel in a barbecue shack. I have an urge to jostle the chair, to see what that frame does. The sign mentions a German institution. So, no single owner. But even in institutions, people manage to bond with chairs. A state-owned chair may be occupied by the same person every day, parked beside that person's bed at night. Maybe the chair was used by someone with cerebral palsy until he died, then someone with a stroke until he died, and on down the line, until.. . .until they all died?
The people who used this wood-and-metal survivor probably loved it, liked to move about even as they were sucked into the nightmare. The nightmare began when the state removed them from their families, concentrated them in institutions. The same state provided them with beautifully engineered chairs and then killed them for eating up the resources of the "fit."
I pull myself away and try to absorb the rest of the exhibit. It tells how the eugenics dragnet widened, of the way concentration strategies, gas-chamber technology and sterilization techniques first designed for disabled people were applied against whole populations defined as genetically undesirable.
By the time I roll onto the stage the next night, I've thought a lot about there and here, then and now. When the first question comes, I tell them about my fascination with the wheelchair, and somehow it sounds funny, and laughter fills the room. We shuttle between the tragedy of Germany then to the comedy of here now, from the horror of bureaucratic killing to a funny confession that I, too, tend to stare at disabled people on the street. Before I know it, I'm giving them a real show.
What has come over me? Part of it is surely the tendency to compartmentalize. But there's more. In this room, people with disabilities in thrilling variety make me feel at home. It's like the disability ghetto of my childhood, but so much better. That was a community of exclusion, created by nondisabled people who considered us unfit. This is a community of inclusion. Here people, disabled and not, are gathered by choice.
I haven't forgotten that two million people remain in U.S. disability institutions, that some disabled children still cannot attend mainstream schools, that too many of us live in poverty. But I can't hold onto anger and sorrow in this room. It is too full of life. Behind the laughs I keep getting, I feel a shared sense of possibility, a drive for a world that will embrace both the fit and the unfit and hold them so dear that the categories die.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2006-04-26 02:49 am (UTC)So, I do agree. But I dislike getting rid of the idea of yes, so severely disabled that it's best to let this person rest. Because I have so little free time and keeping up with my basic needs uses up more energy than I have, which is why I can't fully keep up with doctor's appointments, laundry, getting myself fed and bathed and such, etc. Seriously, being disabled is time-consuming. First there is the 11 hours of sleep I need to be able to keep breathing normally. Then there's the extra amount of time it takes to do anything. I need to allot about an hour to making myself clean. Then there's the need for food and drink, which takes up time. Then I need to keep track of doctors, resting the day before going to them, resting the day after. Handling paperwork related to being disabled. Trying to get an errand run here or there, like going to my bank. Recovering from running said errand. etc.
I'm currently alloting two weeks to recovering from having to go out four days in a row to run errands and go to my family's Sedar. I'm hoping two weeks will be enough, as I'm more than a week into it, and I'm in horrible pain and not feeling very capable.
And yet it's blindness that they think disables people. *sighs*
no subject
Date: 2006-04-26 02:51 am (UTC)I'd say more, but I need to think.
no subject
Date: 2006-04-26 03:35 am (UTC)It reminded me of a sci-fi series by Larry Niven, the Ringworld series. *SPOILERS FOLLOW*
One of the plot elements is that society is so overpopulated, that not everyone gets to have children (called "birthright"). For the most part, having kids is by application, and you have to prove physical and mental fitness. Evolution-of-the-species-wise, it makes some sense, though I can also see the eugenics problem to it. Then things get wacky.
To prevent complete eugenics, maintain some genetic diversity, and make it more fair for the imperfect people, there is also the Birthright Lottery - anyone can randomly get a chance at being allowed to have kids. A group of explorer-bureaucrats (same race as started the Birthright Lottery) were putting together a mission to explore new worlds, and one of the mission members was from three generations of Birthright Lotter winners - it turns out that they'd actually been selectively bred for luck, and it worked!
no subject
Date: 2006-04-26 04:50 am (UTC)Jewish.
Female.
Disabled.
Bi.
That's me. If they could have, they'd have killed me 4 times over. Really makes you think, doesn't it.
no subject
Date: 2006-04-26 02:49 am (UTC)So, I do agree. But I dislike getting rid of the idea of yes, so severely disabled that it's best to let this person rest. Because I have so little free time and keeping up with my basic needs uses up more energy than I have, which is why I can't fully keep up with doctor's appointments, laundry, getting myself fed and bathed and such, etc. Seriously, being disabled is time-consuming. First there is the 11 hours of sleep I need to be able to keep breathing normally. Then there's the extra amount of time it takes to do anything. I need to allot about an hour to making myself clean. Then there's the need for food and drink, which takes up time. Then I need to keep track of doctors, resting the day before going to them, resting the day after. Handling paperwork related to being disabled. Trying to get an errand run here or there, like going to my bank. Recovering from running said errand. etc.
I'm currently alloting two weeks to recovering from having to go out four days in a row to run errands and go to my family's Sedar. I'm hoping two weeks will be enough, as I'm more than a week into it, and I'm in horrible pain and not feeling very capable.
And yet it's blindness that they think disables people. *sighs*
no subject
Date: 2006-04-26 02:51 am (UTC)I'd say more, but I need to think.
no subject
Date: 2006-04-26 03:35 am (UTC)It reminded me of a sci-fi series by Larry Niven, the Ringworld series. *SPOILERS FOLLOW*
One of the plot elements is that society is so overpopulated, that not everyone gets to have children (called "birthright"). For the most part, having kids is by application, and you have to prove physical and mental fitness. Evolution-of-the-species-wise, it makes some sense, though I can also see the eugenics problem to it. Then things get wacky.
To prevent complete eugenics, maintain some genetic diversity, and make it more fair for the imperfect people, there is also the Birthright Lottery - anyone can randomly get a chance at being allowed to have kids. A group of explorer-bureaucrats (same race as started the Birthright Lottery) were putting together a mission to explore new worlds, and one of the mission members was from three generations of Birthright Lotter winners - it turns out that they'd actually been selectively bred for luck, and it worked!
no subject
Date: 2006-04-26 04:50 am (UTC)Jewish.
Female.
Disabled.
Bi.
That's me. If they could have, they'd have killed me 4 times over. Really makes you think, doesn't it.