Disability rights - a rant

[taimatsu]

So, 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.

Comments

[sfred]

Yes. Thank you for writing this.

[1ngi.livejournal.com]

Bravo. This is explained so well.

[bunnypip.livejournal.com]

yes. this. this. this.

Thank you.

[the-alchemist.livejournal.com]

Yes, so much agreement.

At least in terms of autism, 'curing/testing for disabilities' is almost always a euphemism for making sure as many of us as possible are killed before we're born.

[barakta]

Even though 86% or something of people who are legally disabled acquired their disabilities after birth. I saw some stats at some point showing age of acquisition of disabilities broken down by age band...

[barakta]

I will come back to this if I find some brain or spoons. I have been asked very blatantly more than once by people if my impairments/disability are my mum's fault "pills/booze/drugs" or if it's genetic "are you the only one?" "will you have deformed babies". None of anyone's fucking business and does it matter outside of a specific medical context and my personal choices about family planning?! Fucking society that gives itself the right to police my right or desire to parent or otherwise (can't win or not lose either way).

I need to think more about specific meaning of words cos I believe from seeing other people's writings that there is a difference semantically between curing/fixing impairment vs disability which I think is like the fixing pain and bad things but not changing our difference and creativity. One is an identity, the other is some other thing but I've not got the memory or words for remembering it.

Thank you for writing this, it is good to see others' thoughts and words although I am sorry this comes from a place of pain and attack to your existence. I am glad you exist, you're great and I have learned many things from you and about the impairment whose loose category we share.

[taimatsu]

*nod* I know there is a point about a disabled identity which isn't dependent on retaining the actual condition. But I am having so much trouble with the mere idea of being 'enough' to have a disabled or deaf identity at all at the moment that I can't get as far as actually getting rid of my own condition and still 'counting'. Something for me to get my head round further.

[ailbhe]

I think this is my favourite bit:

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.

[taimatsu]

I should have said, obviously, that if people who actually personally deal with issues relating to race and trans* stuff want to have academic debates about it that's nothing to do with me. And if people who are disabled, queer or women want to have them, they totally can. I was objecting to people who are not part of these groups sitting back and talking them over without acknowledging the impact the issues have on people who are right there sitting in front of them. I didn't phrase that bit all that well!

[plumsbitch.livejournal.com]

*applause*

I'm sorry that the world is such that writing it is neccessary.

[snorkel-maiden.livejournal.com]

This is very well written, thank you.

[ozisim.livejournal.com]

Yes!
I am so sick of people telling me that I should get glasses or contacts when I mention that I have a stick because of my vision impairment... And then the questions! And then the assumption that it is OK to launch into talking about terminating my babies!! I find that really really rude! Seriously inappropriate.

[ozisim.livejournal.com]

Anyway... Something I've said to many many agencies over the years -> I'm not dis-abled... I just need people to be considerate about accessibility. Put me on an even playing field, and I'll thrive in anything I do.

[taimatsu]

Absolutely see your point, but I think that is what's behind the social model of disability, and what I was trying to get across in my post - that I too do fine with an even playing field, where things are set up so I can hear what's going on, but in situation where that doesn't happen, the external situation 'dis-ables' me, makes me unable to do what I otherwise could. So in those situations I become 'dis-abled'. (I do think there's more to it than that but in my own situation that outline works quite well.)

[ozisim.livejournal.com]

*nods*
I often wonder why some people are over enthusiastically willing to help me complete a task, but completely incapable of helping me to set up a way to enable me to get it done myself...
Obviously applies more in a work setting, but sometimes I get this from social fringe people too.

[mirabehn.livejournal.com]

Yes, yes, all of this. Thank you.

[akcipitrokulo.livejournal.com]

Thanks for this - it's made me think about it a lot!

Next part is about my trying to understand, so please don't feel you have to explain! It's also not arguing with how you feel about it, jsut trying to understand a bit more.

Part of where I think I have a difficulty internalising it is, especially in the case of a sensory loss, a difficulty understanding why it would not be a thing that someone would want fixed - I don't see it as fixing the person (you are right, the person does not need fixed), but I'm having difficulty that someone would not want to be able to hear music more effectively, for example. It's easier for me to understand emotionally in the case of something like ASD where it is more of who you are?

Sorry if this is not making sense - I think I have a difference in understanding intellectually (which I can see) and understanding emotionally (which is where I'm struggling a little).

[whatifoundthere.livejournal.com]

I'm not Deaf myself, but I work with a lot of Deaf students, and I've never met a single one who wishes they could hear. What they wish for is better access to interpreters, better signage in public places, less hassle about their decision to have families... what taimatsu calls "fixing the world" so that they can be their own Deaf selves in it. I fail to see how that's different from ASD being "part of who you are".

It's pretty patronizing to say, "aww, poor thing, you don't get to listen to music" -- I used to say stuff like that too, and it's the first thing ANYONE says when they hear I work with those students, like literally the first thing every single time, so you may want to reconsider jumping immediately to that example. I mean, each individual person has a billion experiences and talents that I don't, and I have a billion that they don't, so fixating on the one that is primary for you as a hearing person seems like exactly the sort of thing that taimatsu is talking about in this post: putting yourself front and centre and erasing the experience of the disabled person.

As I said, we've all made that mistake, myself included. But I think it's worth rethinking.

[akcipitrokulo.livejournal.com]

Thanks for the thoughts.

I really didn't mean (or feel) "poor you" ... and I am rethinking!

[taimatsu]

I think the short answer is that just as an ASD can be part of 'who a person is', deafness can be part of the whole package of a person, their body, their experiences and their identity. It's not about something they are 'missing out on' - how about all the hearing people who are 'missing out on' Deaf culture and the expressiveness of sign languages, for example?

You might want to read this short article.

[akcipitrokulo.livejournal.com]

Thanks for article and taking time to reply - I thought as soon as I posted question it may have been a mistake. I think I was making the mistake of having, in my head, a disconnect between viewing some disabilities as part of who someone is, and some as an external difficulty, but I'm changing this.

I may also have been influenced by people I know who have lost/are losing their hearing and are distressed by this, but that is a completely different situation.

Hopefully it was clear (and if not, I am really sorry!) that I have never thought that you "needed fixed". I'm also aware that I've intruded onto a rant that I shouldn't have, and sorry for that too.

[taimatsu]

The way you put the question was fine by me, don't worry. Different people with different conditions will vary in how they see themselves; some people will view their disability as a significant part of their identity and others will not and might well want it treated or cured - everyone is different! I'm just saying that a lot of the time, the default assumption is 'you're broken, of course you want to be fixed' and *both* parts of that are offensive and not something anyone should assume.

For me personally, I don't think people go about thinking 'She needs fixing! She is broken!' but they might well think 'Of course she would want to improve her hearing if it were possible'. Turns out it *is* possible and at the moment I seem not to want to do it though originally I thought I would. Is the difference there clear?

[whatifoundthere.livejournal.com]

Great post. Thanks for writing it.

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.

This goes, too, for things that are not "disabilities" exactly, like a cleft lip or crossed eyes, which modern medicine puts unbelievable pressure on parents to "fix" for their children. It's a vicious circle, because a parent who makes the perfectly rational decision to avoid years of mistreatment for their healthy children by "fixing" the condition (in ways that often come with immense risks and side-effects) thereby make the condition even more invisible in the next generation. I don't know what to do about this, and it makes me really sad.

[taimatsu]

Indeed - I had squint surgery very early, it turns out (I thought I'd had only one op on my eyes before my relatively recent one but actually it was two). Totally cosmetic - none of them improved my vision or were likely to.

[samincittagazze.livejournal.com]

Thank you for this. I hadn't considered some of these things from this angle before. x

[friend-of-tofu.livejournal.com]

Interesting, thank you. I don't really know how I feel about these issues generally, other than a general everyone-has-to-do-what's-right-for-them vague principle. My disabilities are a mix of socially disabling (autistic spectrum/mental health) and disabling in all regards (my horrible physical health & crappy immune system), but the latter is not a Formally Diagnosed condition that I have a label for, which makes it harder, and I guess that's a bit social-model in itself?

I guess I don't get upset by the idea of the latter sort of disability being "fixed", because it falls into the pain/discomfort zone, and I would do almost ANYTHING to make it go away as it's so unpleasant and so life-mangling. I do get offended by suggestions of screening for or trying to eliminate autistic spectrum conditions and similar, but that may be a function of privilege; there are other people on the spectrum for whom its disabling impact is severe, closer to the latter kind, and I don't know that some of them would not get rid of it if they could?

What are your thoughts on interventionist transhumanist ideals? While I regard them as often ableist, it's probably fair to say that from an improve-humans-through-technology perspective, *everyone* is more "disabled" than they need to be, because the human body can always be improved (take that pesky death thing...) I always think the idea of a super-improved magic body is kind of awesome, but then I also want to be a giant robot, go figure. And thinking about it, I pondered getting laser eye surgery but one of the things stopping me (as well as cost!) was that I wouldn't need to wear glasses anymore, and I like wearing my glasses. Talk about identity! Of course, if the laser eye surgery could make me see through walls or record events or something, I might get a bit more excited by it...

[taimatsu]

I don't think I have an opinion on transhumanist ideas, not having considered them much. I would have to think about it in the light of ecological issues and it would probably compel me to grapple with leftover unresolved spiritual ideas, and at the moment it's not worth going there, for me. I can see how it's very relevant, though!

On your other points, totally agree. I'm not saying that no-one with a condition like autism or deafness would want it treated/cured/fixed, just that the assumption most people make is that OBVIOUSLY everyone in that position would want to be 'normal'. Some people would like to change their condition, some people wouldn't; sometimes that will be to do with the severity of the condition and the impact on daily life and sometimes it won't. It still relates to external factors, though, and my argument (such as it is) is that where we can change the things in society which have a disabling impact on people, we should, and the question of people getting cured/treated then becomes a much freer choice for them to make individually and less something they are forced into because they aren't supported to lead fulfilling lives as they are.