It's a sad, sad day, my friends, when we can ask that question without irony or hyperbole.
Two incidents have brought this especially to mind recently. The first involves the case of "P.", a 21 year old woman with learning disabilities. According to the article in the British Medical Journal (BMJ 2011; 342:d1112), P's mother, Mrs P, requested the sterilisation after P became pregnant for the second time:
P’s mother, Mrs P, told the judge that her daughter lived with her, and she and her children were being kept together as a family unit. “Obviously we can’t go on supporting more and more children,” she added.
She said her daughter had become pregnant quickly again with her second child and was likely to conceive again unless her tubes were tied. Any future babies would be taken away by social services because the family could not afford to raise them.
Fortunately, the judge adjourned the case until May because he felt he needed expert testimony. I say "fortunately" because this is an all-to-rare recognition that the most convenient solution might not be the most ethical, even when the person in question would possibly never know the difference. I agree with Mencap that "Unless there are clear medical grounds it is an invasion of someone's basic rights to enforce sterilisation and it is unacceptable if other methods of contraception are possible."
This is very, very slippery ground the court is treading, and as I said above, it comes perilously close to a valid comparison with Nazism. I'll be keeping a sharp eye come May, trust me.
Meanwhile, there is this horrifying statement by New Hampshire's governor, Martin Harty (R). From the article:
“I wish we had a Siberia so we could ship them all off to freeze to death and die and clean up the population.” Omand said Harty appeared to be serious. After Omand responded that his idea sounded like what Adolf Hitler did in World War II, Omand said Harty responded, “Hitler did something right, and I agree with (it).”
Well, at least I don't have to make the comparison, he already did it for me.
Showing posts with label modern disability issues. Show all posts
Showing posts with label modern disability issues. Show all posts
15 March, 2011
29 May, 2008
"The doctors told us you'd never amount to anything, Jane. But look around..."
I have realised some of the reason I am so intent on the specific project I want to do. Not just that it naturally combines all my nerdy interests. Not just that I'm happy to have a clear picture and am reluctant to go back to the drawing board.
Those who've been reading my blog for a while might remember the post I wrote for a friend who recently died, a woman named Alia. l'Arche, for those unfamiliar with it, is a network of intentional communities centred around men and women with developmental disabilities. You don't go to work at l'Arche. You go to live at l'Arche. Not just "live" in the sense of sleeping and eating there - you go to live life in all its complexities, joys, and sorrows. The point of l'Arche is to be a friend, to learn from the disabled core members, to allow yourself to simply be human. It is not a "job" you can leave unchanged.
I was only there at l'Arche Daybreak for two four-month terms, hardly any time at all in l'Arche terms. But those eight months sparked an interest in disability as a concept, a social force, an academic study. Some of the earliest books on disability I read, in the community's library, opened my eyes to the reality that people with intellectual impairments were (are) often treated differently, even prejudicially. I realised that it was (is) common practice (especially in certain protestant denominations) to deny baptism to mentally disabled children and adults.
I read A Place to Hold My Shaky Heart, a small book of mini-biographies of some of the core members in the community. In it was the story of Carol, a woman who I was living with at the time. When Carol was born, she wasn't baptised. She was placed in a large government institution instead. No one bothered to teach her to talk. When she came to Daybreak (in her 40s, I believe), she still could not talk. One of the other core members in her new house taught her to sing "Happy Birthday" (an excellent song for any occasion), and she learned a few other words. Eventually, the people living with Carol decided she should be given the opportunity to be baptised. I honestly do not remember how they discerned the answer, but I can tell you from experience that "non-verbal" people are perfectly capable of expressing themselves, if you know how to listen. Carol was baptised, and she was radiant. She had finally been welcomed into the community that should have been her birthright. She knew that she was no longer on the outside. Now, I've just paraphrased an entire chapter of a book, and if anyone was moved by my clumsy retelling, I highly recommend the whole book.
Mike and Francis are two men I lived with as well. They, and other members of the Daybreak community, are the altar serves and Eucharistic ministers at the community chapel, the Dayspring. Services at the Dayspring are unlike any other. In a world where an autistic child can be barred from his church, people at the Dayspring are welcome to wander, to cry, to wail, to laugh, to dance, and to pray aloud as they see fit. They occupy places of respect and honour.
One final story. During my first term at Daybreak, I lived with a woman named Jane. She was stubborn, loud, opinionated, and she was my sunshine. She drove me nuts, many times, but I still consider her one of my dearest friends. There is not time or space here for me to describe how she changed my life. I remember her 59th birthday, though. In this house, it was customary that the food part of a birthday celebration be followed by an exodus to the living room, where everyone gathered would have a chance to celebrate the birthday person. A memory, a prayer, a story of how a person had been changed, anything was welcome. The room was packed, with people sitting on the arms of the couch, standing in the doorway, sitting on the floor, and after we'd been around the room, it was her father's turn to speak. He told us how when Jane was 4, the doctors had told him she would never amount to anything or be anything, and he would be best off sending her to an institution. Not knowing any better, and trusting the doctors, he did so. "But look around," he said. "Look at all the people whose lives you've touched, Jane. Look how important you've become."
These people made me who I am. Their lives and stories have been the inspiration for my academic ideas. It is their exclusion and marginalisation, followed by their inclusion and centring, that prompted me to ask "What happened in the medieval period? Carol, would you have been baptised, then? Would the Daybreak core members be offered the Eucharist, as they are now?"
This project isn't just academic curiosity, for me. It is answering a deeply personal, and even spiritual question. The story is important.
My dear Daybreak friends, this is just one more small part of your legacy.
Those who've been reading my blog for a while might remember the post I wrote for a friend who recently died, a woman named Alia. l'Arche, for those unfamiliar with it, is a network of intentional communities centred around men and women with developmental disabilities. You don't go to work at l'Arche. You go to live at l'Arche. Not just "live" in the sense of sleeping and eating there - you go to live life in all its complexities, joys, and sorrows. The point of l'Arche is to be a friend, to learn from the disabled core members, to allow yourself to simply be human. It is not a "job" you can leave unchanged.
I was only there at l'Arche Daybreak for two four-month terms, hardly any time at all in l'Arche terms. But those eight months sparked an interest in disability as a concept, a social force, an academic study. Some of the earliest books on disability I read, in the community's library, opened my eyes to the reality that people with intellectual impairments were (are) often treated differently, even prejudicially. I realised that it was (is) common practice (especially in certain protestant denominations) to deny baptism to mentally disabled children and adults.
I read A Place to Hold My Shaky Heart, a small book of mini-biographies of some of the core members in the community. In it was the story of Carol, a woman who I was living with at the time. When Carol was born, she wasn't baptised. She was placed in a large government institution instead. No one bothered to teach her to talk. When she came to Daybreak (in her 40s, I believe), she still could not talk. One of the other core members in her new house taught her to sing "Happy Birthday" (an excellent song for any occasion), and she learned a few other words. Eventually, the people living with Carol decided she should be given the opportunity to be baptised. I honestly do not remember how they discerned the answer, but I can tell you from experience that "non-verbal" people are perfectly capable of expressing themselves, if you know how to listen. Carol was baptised, and she was radiant. She had finally been welcomed into the community that should have been her birthright. She knew that she was no longer on the outside. Now, I've just paraphrased an entire chapter of a book, and if anyone was moved by my clumsy retelling, I highly recommend the whole book.
Mike and Francis are two men I lived with as well. They, and other members of the Daybreak community, are the altar serves and Eucharistic ministers at the community chapel, the Dayspring. Services at the Dayspring are unlike any other. In a world where an autistic child can be barred from his church, people at the Dayspring are welcome to wander, to cry, to wail, to laugh, to dance, and to pray aloud as they see fit. They occupy places of respect and honour.
One final story. During my first term at Daybreak, I lived with a woman named Jane. She was stubborn, loud, opinionated, and she was my sunshine. She drove me nuts, many times, but I still consider her one of my dearest friends. There is not time or space here for me to describe how she changed my life. I remember her 59th birthday, though. In this house, it was customary that the food part of a birthday celebration be followed by an exodus to the living room, where everyone gathered would have a chance to celebrate the birthday person. A memory, a prayer, a story of how a person had been changed, anything was welcome. The room was packed, with people sitting on the arms of the couch, standing in the doorway, sitting on the floor, and after we'd been around the room, it was her father's turn to speak. He told us how when Jane was 4, the doctors had told him she would never amount to anything or be anything, and he would be best off sending her to an institution. Not knowing any better, and trusting the doctors, he did so. "But look around," he said. "Look at all the people whose lives you've touched, Jane. Look how important you've become."
These people made me who I am. Their lives and stories have been the inspiration for my academic ideas. It is their exclusion and marginalisation, followed by their inclusion and centring, that prompted me to ask "What happened in the medieval period? Carol, would you have been baptised, then? Would the Daybreak core members be offered the Eucharist, as they are now?"
This project isn't just academic curiosity, for me. It is answering a deeply personal, and even spiritual question. The story is important.
My dear Daybreak friends, this is just one more small part of your legacy.
20 May, 2008
Parents Face Restraining Order for Austistic Son
This is just ludicrous. I hope the parents win. Jesus didn't say "Let the well-behaved little children come to me."
Apparently their son "fights when he's being restrained." Well, wouldn't you, if you were just going about your business and someone just threw you to the ground and held you there? Sometimes it's necessary when there's an imminent danger, but only a heartless jerk would expect him to be happy about being restrained. And the parents' response to the "sitting on him to keep him quiet" accusation is 100% normal for autistic kids. Some people just like the security of it. Just like I like my shoes tightly laced.
Why do I love l'Arche again? Oh yeah, that's why.
Apparently their son "fights when he's being restrained." Well, wouldn't you, if you were just going about your business and someone just threw you to the ground and held you there? Sometimes it's necessary when there's an imminent danger, but only a heartless jerk would expect him to be happy about being restrained. And the parents' response to the "sitting on him to keep him quiet" accusation is 100% normal for autistic kids. Some people just like the security of it. Just like I like my shoes tightly laced.
Why do I love l'Arche again? Oh yeah, that's why.
16 January, 2008
Blogging Against Aversives, 14-01-08
Mike Reynolds at Uppity Disability started this the other day. I'm a bit late to the party, but I'd like to chime in, because this is important.
At several institutions for "troubled" youth in the United States (and, I imagine, elsewhere), "aversive therapies" are employed to correct behaviour. The "therapies" include withholding food, isolation, and electric shocks. The behaviours range from self-injurious to "nagging." Many of the children and youth imprisoned at these "schools" are autistic, mentally disabled, abuse victims, or any combination of the above.
The link to Uppity Disability (above) has more details and many more links, because yesterday was "Blogging Against Aversives" day. I don't have the stomach to rehash it all, so check them out if you're not sure what I'm talking about. Odd One Out has an excellent summary of the situation, complete with a list of issues a 2006 noted with the Judge Rotenberg Center (the most well-known "aversive therapies" school). Not Dead Yet includes a rather chilling conversation with one of the founders of the electric shock "therapy."
Let's start with where I stand on this issue: Electroshock as an aversive is outrageous. I'm shocked that it isn't illegal.
Where I work, we have aggressive and self-injurious residents. We have autistic residents. It's illegal for us to even withhold dessert. We're not allowed to defend ourselves from attack, except in strictly non-violent and ministry-approved ways. And I'm not about to divulge specifics, but if we can hack it with the behaviours we get, there is no excuse for anyone to be using electroshock.
There are other ways to deal with problem behaviours, even serious ones. Many of these centres forbid the use of medications. Some of the kids there have behaviours that can be positively altered or even eliminated by very common and effective drugs. Rather than punishing kids for acting out, counselling and actual therapy should be used to get at the roots of a problem. In extreme cases where self-injury is an issue, environment modification can make a person safer.
Now, one might be tempted to dismiss such behaviour as "medieval." An it's certainly true that the infamous Hospital of St. Mary Bethlehem could be compared to the JRC. Yet St. Mary Bethlehem was a post-medieval institution, and the widespread segregation and seclusion of mentally impaired persons seems to be a depressingly modern institution. The (admittedly sparse) literature on the subject locates the mentally impaired person outside the hospital. As far as we can tell, they were not segregated until the early-modern (rennaissance) period.**
What are we doing? Why do we permit this? What is wrong with us, as a society, that we seem to have regressed in our treatment of troubled children? Even the worst criminals in our prisons are not tortured like this. 1,000 years ago, right in the middle of the so-called Dark Ages, children were not treated like this.
If you live in a state with one of these abusive "schools," please write your governor. Sign the petition online. Write your senator. Write your congressman. This is absurd. This is a shame on all of us.
** Tim Stainton. “Medieval Charitable Institutions and Intellectual Impairment.” Journal on Developmental Disabilities. 8 no. 2 (2001).
M. Carlin. “Medieval English hospitals.” The hospital in history. ed. L. Granshaw and R. Porter (London: Routledge, 1989), 21-40.
At several institutions for "troubled" youth in the United States (and, I imagine, elsewhere), "aversive therapies" are employed to correct behaviour. The "therapies" include withholding food, isolation, and electric shocks. The behaviours range from self-injurious to "nagging." Many of the children and youth imprisoned at these "schools" are autistic, mentally disabled, abuse victims, or any combination of the above.
The link to Uppity Disability (above) has more details and many more links, because yesterday was "Blogging Against Aversives" day. I don't have the stomach to rehash it all, so check them out if you're not sure what I'm talking about. Odd One Out has an excellent summary of the situation, complete with a list of issues a 2006 noted with the Judge Rotenberg Center (the most well-known "aversive therapies" school). Not Dead Yet includes a rather chilling conversation with one of the founders of the electric shock "therapy."
Let's start with where I stand on this issue: Electroshock as an aversive is outrageous. I'm shocked that it isn't illegal.
Where I work, we have aggressive and self-injurious residents. We have autistic residents. It's illegal for us to even withhold dessert. We're not allowed to defend ourselves from attack, except in strictly non-violent and ministry-approved ways. And I'm not about to divulge specifics, but if we can hack it with the behaviours we get, there is no excuse for anyone to be using electroshock.
There are other ways to deal with problem behaviours, even serious ones. Many of these centres forbid the use of medications. Some of the kids there have behaviours that can be positively altered or even eliminated by very common and effective drugs. Rather than punishing kids for acting out, counselling and actual therapy should be used to get at the roots of a problem. In extreme cases where self-injury is an issue, environment modification can make a person safer.
Now, one might be tempted to dismiss such behaviour as "medieval." An it's certainly true that the infamous Hospital of St. Mary Bethlehem could be compared to the JRC. Yet St. Mary Bethlehem was a post-medieval institution, and the widespread segregation and seclusion of mentally impaired persons seems to be a depressingly modern institution. The (admittedly sparse) literature on the subject locates the mentally impaired person outside the hospital. As far as we can tell, they were not segregated until the early-modern (rennaissance) period.**
What are we doing? Why do we permit this? What is wrong with us, as a society, that we seem to have regressed in our treatment of troubled children? Even the worst criminals in our prisons are not tortured like this. 1,000 years ago, right in the middle of the so-called Dark Ages, children were not treated like this.
If you live in a state with one of these abusive "schools," please write your governor. Sign the petition online. Write your senator. Write your congressman. This is absurd. This is a shame on all of us.
** Tim Stainton. “Medieval Charitable Institutions and Intellectual Impairment.” Journal on Developmental Disabilities. 8 no. 2 (2001).
M. Carlin. “Medieval English hospitals.” The hospital in history. ed. L. Granshaw and R. Porter (London: Routledge, 1989), 21-40.
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