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May. 1st, 2012 12:42 am
Double Standards
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nightengaleskndThis is my post for Blogging Against Disablism Day, in which I have been posting since 2006. Please note that in the intervening years of 2007, 2008, 2009, 2010, and 2011, neither my Microsoft spellchecker nor the Livejournal spellchecker has learned that Ablism, Ableism, Disablism or Disableism are words. Please also note that I use ablism and disablism more or less interchangeably.
The thing about disablism is that almost no one wakes up in the morning and thinks, “I’m going to discriminate against people with disabilities today!” Discrimination is sometimes blatent, but often subtle, so subtle that it is built into routines and expectations and policies until it seems like the way things have to be, rather than the way the non-disabled majority has designed things to be. Disabilism is so pervasive, and so interwoven into just about everything, that it can take time to recognize the patterns in events. Ablism occurs whenever there is an assumption, implicit or explicit, that non-disability is inherently better than disability. Ablism goes from inconvenient to dangerous when this assumption leads to the idea that a disabled life is less worth living than a non-disabled one.
I am not the first person to point out any of these disablist double standards. Sadly, perhaps because I tend to ignore a lot of media, it was other people’s analyses that drew my attention to them in the first place. What I haven’t seen are as many overarching attempts to put all the double standards together in one place, to really stare at them and realize just how clearly they all tie in together. Some get talked about more in physical disability spaces, some in autistic spaces, some in parent spaces and some in disability community spaces. But it’s the same ablism that underlies all three.
( Please note that I am going to be addressing some serious and potentially triggering topics, including abortion, suicide and murder. )
Pro choice, except that the only right choice is to have an abortion if the baby has a disability
Please do not start a pro-life/pro-choice debate here. I am writing from the premise that abortion is legal in this country, which it is, and that people who call themselves pro-choice believe that abortion should be legal. There is another premise, as well, that people calling themselves “pro-choice” believe that there is a choice on the part of the pregnant person, to have an abortion or to continue the pregnancy.
The double standard comes in when termination is considered the only appropriate choice if there is a prenatal diagnosis of disability. There is a book I have not yet read called Defiant Birth which addresses this subject. It profiles women who were advised not to become pregnant or to terminate a pregnancy due to disability of either the mother or baby, who instead chose to continue the pregnancies. Studies have shown that most health care providers who do prenatal care assume that a prenatal diagnosis of Down Syndrome will automatically lead to termination, which was anecdotally the case on my family med and OB rotations in medical school several years ago. More recently, I have cared for a child who had a positive prenatal screen for a condition and whose mother was advised to have an abortion at multiple prenatal visits. When she refused, a health care provider berated her that she was costing the state 1000s of dollars. The child did not actually end up having the predicted condition, by the way.
I care the most about the pressure from the health care system, since it is where I work and is in a position of power, but read the comments on any media article or livejournal post about a child with a genetic condition and find many advocating that the person in question never should have been born in the first place. On second thought, don’t read the comments.
Suicide is wrong, unless you have a disability
Our society generally disapproves of suicide. The level and extent of disapproval varies, of course, depending on cultural and personal influences. Until recently, some US states even listed attempted suicide as a crime, as did the UK until 1961. People who are suicidal are generally counseled to get help. Help can include a psychiatric evaluation and being committed involuntarily to inpatient treatment. While undergoing this treatment, people are generally watched closely and prevented access to any materials which could be used to commit suicide. It is assumed that wanting to end one’s life is such a misguided and mistaken idea that anyone who wants to do so must be prevented until they regain sanity.
That is, unless the person has a significant physical disability or chronic illness. I differentiate here, because many people who are suicidal have mental illnesses, but somehow that doesn’t come up in these assisted suicide arguments. What comes up is the notion that death is gloriously preferable to disability or disease. Jack Kevorkian made a career of this notion. Oregon and Washington State have legalized it. Not Dead Yet addresses the problem with the vehemence it deserves. Movies have been made showing suicide or murder of a person with a disability as a noble, heroic, climactic act. The ever eloquent William Peace, who blogs at Bad Cripple, describes a physician suggesting he chose to forego treatment for an infection due to his underlying disability. Other competent adults report having a DNR status entered into their hospital files over their explicit objections.
I am a self-described patient autonomy advocate. I probably err on the side of autonomy over other medical ethics principles. I highly value the right of people to decide what to do with their own bodies. So why can’t I get behind supporting the right of people to kill themselves if they so choose?
Because of the double standard.
Killing a child is horrible, unless the child has a disability
This one is especially timely, because several children and adults with autism have been killed by their parents in recent months. It isn’t a problem unique to autism, but some of the best recent writing on the subject has come from the autistic community, here and here and here and elsewhere. Watch the way the media handles the murder of a non-disabled child by a parent versus the murder of a disabled one. One is portrayed as a horrible, horrible act. The other is portrayed as sad but understandable. The parent was overwhelmed, didn’t have enough supports, worried about the future of the child.
Also watch who gets interviewed in those stories. Almost exclusively, other non-disabled parents of children with disabilities are quoted. Almost exclusively, people with disabilities are not. When people with disabilities speak up in the comments, they are told they couldn’t possibly understand how hard life was for the parent.
Recently, Robert Latimer, who killed his daughter Tracy , who had cerebral palsy, was interviewed on Canadian TV about how killing his child was an act of mercy. The majority of audience members of a recent Dr. Phil show agreed that a woman should be permitted to kill her two children who have a genetic disability.
There is a lot of education I want to do about disability, and a lot of conversations I would like to be having, at work and elsewhere. I am trying to address subtle ablism in health care. I am trying to address barrier for health care providers with disabilities. I am trying to create a brighter and more accepting future for all my little patients with developmental disabilities.
But before we can truly tackle the subtle acts of ablism, we need to expose the blatant ones. These isolated stories tell a bigger one, one of a society that tells us that disabled lives are worth less. And the belief that some lives are worth less leads to the ending of those lives. It’s a double standard. It’s life and death. It’s ablism.
The thing about disablism is that almost no one wakes up in the morning and thinks, “I’m going to discriminate against people with disabilities today!” Discrimination is sometimes blatent, but often subtle, so subtle that it is built into routines and expectations and policies until it seems like the way things have to be, rather than the way the non-disabled majority has designed things to be. Disabilism is so pervasive, and so interwoven into just about everything, that it can take time to recognize the patterns in events. Ablism occurs whenever there is an assumption, implicit or explicit, that non-disability is inherently better than disability. Ablism goes from inconvenient to dangerous when this assumption leads to the idea that a disabled life is less worth living than a non-disabled one.
I am not the first person to point out any of these disablist double standards. Sadly, perhaps because I tend to ignore a lot of media, it was other people’s analyses that drew my attention to them in the first place. What I haven’t seen are as many overarching attempts to put all the double standards together in one place, to really stare at them and realize just how clearly they all tie in together. Some get talked about more in physical disability spaces, some in autistic spaces, some in parent spaces and some in disability community spaces. But it’s the same ablism that underlies all three.
( Please note that I am going to be addressing some serious and potentially triggering topics, including abortion, suicide and murder. )
Pro choice, except that the only right choice is to have an abortion if the baby has a disability
Please do not start a pro-life/pro-choice debate here. I am writing from the premise that abortion is legal in this country, which it is, and that people who call themselves pro-choice believe that abortion should be legal. There is another premise, as well, that people calling themselves “pro-choice” believe that there is a choice on the part of the pregnant person, to have an abortion or to continue the pregnancy.
The double standard comes in when termination is considered the only appropriate choice if there is a prenatal diagnosis of disability. There is a book I have not yet read called Defiant Birth which addresses this subject. It profiles women who were advised not to become pregnant or to terminate a pregnancy due to disability of either the mother or baby, who instead chose to continue the pregnancies. Studies have shown that most health care providers who do prenatal care assume that a prenatal diagnosis of Down Syndrome will automatically lead to termination, which was anecdotally the case on my family med and OB rotations in medical school several years ago. More recently, I have cared for a child who had a positive prenatal screen for a condition and whose mother was advised to have an abortion at multiple prenatal visits. When she refused, a health care provider berated her that she was costing the state 1000s of dollars. The child did not actually end up having the predicted condition, by the way.
I care the most about the pressure from the health care system, since it is where I work and is in a position of power, but read the comments on any media article or livejournal post about a child with a genetic condition and find many advocating that the person in question never should have been born in the first place. On second thought, don’t read the comments.
Suicide is wrong, unless you have a disability
Our society generally disapproves of suicide. The level and extent of disapproval varies, of course, depending on cultural and personal influences. Until recently, some US states even listed attempted suicide as a crime, as did the UK until 1961. People who are suicidal are generally counseled to get help. Help can include a psychiatric evaluation and being committed involuntarily to inpatient treatment. While undergoing this treatment, people are generally watched closely and prevented access to any materials which could be used to commit suicide. It is assumed that wanting to end one’s life is such a misguided and mistaken idea that anyone who wants to do so must be prevented until they regain sanity.
That is, unless the person has a significant physical disability or chronic illness. I differentiate here, because many people who are suicidal have mental illnesses, but somehow that doesn’t come up in these assisted suicide arguments. What comes up is the notion that death is gloriously preferable to disability or disease. Jack Kevorkian made a career of this notion. Oregon and Washington State have legalized it. Not Dead Yet addresses the problem with the vehemence it deserves. Movies have been made showing suicide or murder of a person with a disability as a noble, heroic, climactic act. The ever eloquent William Peace, who blogs at Bad Cripple, describes a physician suggesting he chose to forego treatment for an infection due to his underlying disability. Other competent adults report having a DNR status entered into their hospital files over their explicit objections.
I am a self-described patient autonomy advocate. I probably err on the side of autonomy over other medical ethics principles. I highly value the right of people to decide what to do with their own bodies. So why can’t I get behind supporting the right of people to kill themselves if they so choose?
Because of the double standard.
Killing a child is horrible, unless the child has a disability
This one is especially timely, because several children and adults with autism have been killed by their parents in recent months. It isn’t a problem unique to autism, but some of the best recent writing on the subject has come from the autistic community, here and here and here and elsewhere. Watch the way the media handles the murder of a non-disabled child by a parent versus the murder of a disabled one. One is portrayed as a horrible, horrible act. The other is portrayed as sad but understandable. The parent was overwhelmed, didn’t have enough supports, worried about the future of the child.
Also watch who gets interviewed in those stories. Almost exclusively, other non-disabled parents of children with disabilities are quoted. Almost exclusively, people with disabilities are not. When people with disabilities speak up in the comments, they are told they couldn’t possibly understand how hard life was for the parent.
Recently, Robert Latimer, who killed his daughter Tracy , who had cerebral palsy, was interviewed on Canadian TV about how killing his child was an act of mercy. The majority of audience members of a recent Dr. Phil show agreed that a woman should be permitted to kill her two children who have a genetic disability.
There is a lot of education I want to do about disability, and a lot of conversations I would like to be having, at work and elsewhere. I am trying to address subtle ablism in health care. I am trying to address barrier for health care providers with disabilities. I am trying to create a brighter and more accepting future for all my little patients with developmental disabilities.
But before we can truly tackle the subtle acts of ablism, we need to expose the blatant ones. These isolated stories tell a bigger one, one of a society that tells us that disabled lives are worth less. And the belief that some lives are worth less leads to the ending of those lives. It’s a double standard. It’s life and death. It’s ablism.
no subject
Because of the double standard.
I understand what you're saying, but it's not some kind of Sophie's Choice between life and death. Denying one right does not guarantee that the converse right will be honored.
no subject
Assuming one is "pro-choice", I'd assume "pro-suicide" would probably play out about the same in our society - a lot of pressure to "stop being a burden". If one is "pro-life" then I'd assume one is against suicide too. Either way... it doesn't paint a terribly pretty picture :(
no subject
Yes, though I would go even further. If someone who doesn't have disabilities is suicidal, they're assumed to be mentally unhealthy and to need help. If a person who does have (certain?) disabilities or illnesses is suicidal, they're assumed to be brave. Some time ago I ran into a news article about a ten year old boy with cancer who chose to stop treatment, and the whole thing was all these adults saying they admired his bravery. It made me feel very uncomfortable.
Not because I think he can't make that decision. But I just wondered -- did any adults around him disagree? How did he prove to them he'd considered it? If he really did, that's fine. It is his choice. But if all the adults around him went "Oh, you're so mature!" or something (and I'm not saying they did, just wondering) then that makes me a bit concerned. I don't have any answers, but the way suicidality is reviled in most but celebrated in others makes me a bit nervous.
no subject
My physician, whom I don't know well, seems to not be in the majority here because of a conversation we had last year. I was trying to decide whether to include a DNR in my healthcare proxy. Originally, I had done so, but my physician wanted to discuss this further for fear I didn't understand all the ramifications behind the DNR. We discussed this, and she told me that she routinely doesn't do this for individuals in their 30's.
In light of your post here, I'm very glad she advised against it. Was I being rash? I really don't know. More likely, I didn't understand all the ramifications behind a DNR so having that consult with my physician was a good idea.
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So why can’t I get behind supporting the right of people to kill themselves if they so choose?
Because of the double standard.
My mother was a very religious woman. When she was on her deathbed (cancer, everywhere), she at one point begged her caregivers to kill her and end it.
I saw how she suffered. No one deserves to suffer like that, to go out the way she did.
I think that we are kinder to our pets than we are to our fellow people.
no subject
If Tracy Latimer had been able to communicate verbally and said that she wanted to end her life, no responsible clinician would have let it happen. Everyone would have recognized that a child in full possession of their cognitive faculties (which Tracy, to all appearances, was not; she had an intellectual disability) was too young to recognize the ramifications of a decisions like that, at 12 years old. And yet, her father decided for her that her pain was unbearable, killed her, and the majority of Canadians agreed that he did the right thing. And was out of prison in less than 10 years.
Don't get me started about that woman on Dr. Phil.
Great post, by the way.
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Welcome to my LJ, by the way. I see you all over the blogosphere, most notibly at http://restlesshands42.wordpress.com/. I wish there was a way to unlock an LJ for people with twitter logins since most of the rest of my disability ramblings are locked, as they often touch on work situations.
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