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Disability rights - a rant
Tuesday, 9 April 2013 09:54 pmSo, for assorted Reasons I said I would post something about disability issues, in the context of a conversation about possible cures/treatments/fixings for certain conditions. The conversation in question rather upset me and I thought that an LJ post would be the best way to explain why. I do not claim it is well-expressed or especially coherent, it's simply my best effort at the moment. It may also sound quite pissed-off, because I was. Am.
Please note this is a rare public post.
The conversation we had wasn't just a lovely theoretical debate about a political issue. It felt like it was erasing people like me - disabled people. I know it's easy to forget I have a disability but if I'm outside my house I rarely get to forget it myself.
If we lived in a perfect utopian society then the only problem with having a 'disability' would be with pain or discomfort or similar issues, and I see no problem with working to alleviate or cure those things.
But as it is, people are 'disabled' by a society which does not accommodate their needs or accept their differences. E.g. my hearing impairment does not cause me any problems when I'm at home in my own space, or talking to small numbers of understanding people. It becomes a problem when I have to be in spaces with a lot of background noise, when announcements are made on poor quality speakers, or when people refuse to face me and speak clearly. The problem is caused by those external factors, not by the fact that I have a weirdly-formed ear. Some people with short stature might find that the problems they face are primarily because of others' attitudes to them and a lack of accessible services, not because of any problem with the working of their body. Some people with autism, again, might find that they could live perfectly happily the way they are if it were not for other people's assumptions about social rules and public environments, and the idea that so-called 'normal' ways of behaving and relating should be universal.
Someone made a comment about letting parents choose for their child whether to correct a condition or not. In a world where there is a bias against disabled people this is not a true choice. Even with conditions where there is no pain/discomfort involved, parents would generally choose not to expose their child to negative treatment by others, so they would choose to remove the condition. People with disabilities would become rarer and the norm would be that these things should be changed. This process reinforces the idea that it's not ok to be disabled.
My point is that I am disabled, and I want my friends to understand that it's ok to have a disability. I am revolted by any suggestion that disabilities should be routinely cured, removed, tested for and eliminated, or otherwise phased out; in a utopian society where we could fix everything and there were no prejudices or barriers against disabled people, perhaps this would work, but in the real world right now, these things just reinforce the idea that anyone different is defective, that there's one perfect way to exist, that there's one type of body and set of abilities that is acceptable and deviations should be corrected.
You don't get to have an academic or theoretical debate about this stuff in front of me (or about feminism, or about queer rights, and really just avoid stuff like race and trans rights too, thanks, even though they aren't my personal battles) because I do not have the luxury of a detached position from which to argue. I can't discuss this stuff without it applying to me. I can't state my position without arguing for my own existence and I can't hear you 'debating' with me without hearing you disagree with my existence. So if it's not something that applies to you, ask questions instead of stating your views and try to do some research before asking to be educated by someone else. We may be able to have a constructive discussion but you need to tread very carefully.
The bottom line is that you need to understand that if you make approving comments about curing/testing for disabilities, I'm going to hear that you either don't give a shit about me, or you do actually think that people like me should be 'fixed'. I don't need fixing - the world needs fixing. Fix the world first.
Please note this is a rare public post.
The conversation we had wasn't just a lovely theoretical debate about a political issue. It felt like it was erasing people like me - disabled people. I know it's easy to forget I have a disability but if I'm outside my house I rarely get to forget it myself.
If we lived in a perfect utopian society then the only problem with having a 'disability' would be with pain or discomfort or similar issues, and I see no problem with working to alleviate or cure those things.
But as it is, people are 'disabled' by a society which does not accommodate their needs or accept their differences. E.g. my hearing impairment does not cause me any problems when I'm at home in my own space, or talking to small numbers of understanding people. It becomes a problem when I have to be in spaces with a lot of background noise, when announcements are made on poor quality speakers, or when people refuse to face me and speak clearly. The problem is caused by those external factors, not by the fact that I have a weirdly-formed ear. Some people with short stature might find that the problems they face are primarily because of others' attitudes to them and a lack of accessible services, not because of any problem with the working of their body. Some people with autism, again, might find that they could live perfectly happily the way they are if it were not for other people's assumptions about social rules and public environments, and the idea that so-called 'normal' ways of behaving and relating should be universal.
Someone made a comment about letting parents choose for their child whether to correct a condition or not. In a world where there is a bias against disabled people this is not a true choice. Even with conditions where there is no pain/discomfort involved, parents would generally choose not to expose their child to negative treatment by others, so they would choose to remove the condition. People with disabilities would become rarer and the norm would be that these things should be changed. This process reinforces the idea that it's not ok to be disabled.
My point is that I am disabled, and I want my friends to understand that it's ok to have a disability. I am revolted by any suggestion that disabilities should be routinely cured, removed, tested for and eliminated, or otherwise phased out; in a utopian society where we could fix everything and there were no prejudices or barriers against disabled people, perhaps this would work, but in the real world right now, these things just reinforce the idea that anyone different is defective, that there's one perfect way to exist, that there's one type of body and set of abilities that is acceptable and deviations should be corrected.
You don't get to have an academic or theoretical debate about this stuff in front of me (or about feminism, or about queer rights, and really just avoid stuff like race and trans rights too, thanks, even though they aren't my personal battles) because I do not have the luxury of a detached position from which to argue. I can't discuss this stuff without it applying to me. I can't state my position without arguing for my own existence and I can't hear you 'debating' with me without hearing you disagree with my existence. So if it's not something that applies to you, ask questions instead of stating your views and try to do some research before asking to be educated by someone else. We may be able to have a constructive discussion but you need to tread very carefully.
The bottom line is that you need to understand that if you make approving comments about curing/testing for disabilities, I'm going to hear that you either don't give a shit about me, or you do actually think that people like me should be 'fixed'. I don't need fixing - the world needs fixing. Fix the world first.
