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4:36am May 25, 2014

If I have disability community loyalty at all, it’s to the developmental disability community.

And when I say developmental disability, it’s not just a code word for autism.

(And autism is not the only developmental disability I’ve ever been diagnosed with.  I’ve also been diagnosed with developmental disability not otherwise specified, at one point.  And the way I was talked about while diagnosed with autism, wasn’t just that I had autism, it was that I had a “severe and complex neurodevelopmental disability” or something like that.  They believed that I had a number of developmental factors going on, including some that have no official name, in addition to autism.)

So when I describe myself as having developmental disabilities, I’m talking about autism but I’m also talking about that other stuff.

And when I describe developmental disability in general, I mean it in the broad sense:  Autism, intellectual disability, cerebral palsy, childhood epilepsy, spina bifida, childhood brain injury, and lots of very specific conditions, both cognitive and physical, that end up falling under that umbrella.

That diversity is why that community is the only one I can even close to call home.  Because it’s the only community that isn’t fazed by the complexity of my collection of impairments.  That complexity is normal in the DD world.  There’s lots of DD people who have CP and blindness and an intellectual disability and a host of chronic illnesses related to a genetic syndrome and a bunch of other things.

I’m not the sort of person who is always ‘coming home’ in different communities, and I regard that 'coming home’ experience with a great deal of cynicism and suspicion because of the things it makes people do.

But the DD community is the closest thing I have to a home in the disability world.  I’ve received developmental disability services since I was twenty years old, and been in more sporadic DD and mixed psych/DD settings before that.  The people I spend my time around are people with developmental disabilities.  The life experiences I have are the same life experiences as most adults in the part of the DD system that I’m in.  The experiences of the system draw DD people together the same way experiences of the psych system draw psychiatrically disabled people together.

And I almost feel like communities based on shared experiences of a system like that… there’s something more diverse about them, and more honest about them, than communities that are based around an impairment group.

I’ve noticed that the DD community tends to be as diverse as the surrounding community in general.  It’s not like the autistic community which is overwhelmingly white and middle-class.  If I go to DD events, I can expect to see the same cross-section of the population I’d see anywhere else.  Except we tend to be more often poor and working-class, because of the kinds of jobs available to most of us.

My loyalty to this community means a lot of things, as do my connections to this community.

It means I get pissed off when people think they know all about the politics of intellectual disability.  Like they think they know what all people with intellectual disabilities think about various issues, when really they just… don’t.  Or they totally overlook people with intellectual disabilities as having opinions at all.  They assume that people with ID are just being brainwashed by nondisabled leaders or something, they don’t think they have thoughts of their own.  Especially when the predominant thoughts ID people have about something, clash with the views of other disability rights advocates.  Then it’s always that they must be too naive or too brainwashed or too unsophisticated to have their own opinions.

And when people make really unwarranted assumptions about the abilities of people with ID.  They assume that people with ID never go to college, never do well in intellectual or academic areas, never use or understand “big words”, can’t read or write, don’t use the Internet, are not on tumblr reading this post.  And when people with ID do any of those things, they assume that they must be misdiagnosed.

(I get this a lot and I’m not even ID.  But my IQ is 85 – at last testing; it may be lower or higher now; it jumps around a lot – and people are always, always telling me that my intellectual abilities prove that my IQ isn’t really that low.  They have no idea how offensive and insulting that is.  Donna Williams, who has written nine books and has at least one university degree, has an intellectual disability with an IQ of 67, and she’s done tons of things I’ll never be able to do.  This does not remove the fact that she has an intellectual disability.  You never, never know if someone you’re talking to has an intellectual disability.)

Anyway, I feel like a lot of people completely discount the DD community.  And when you say you have a developmental disability online, people generally assume you mean autism and autism alone.  They rarely assume intellectual disability, CP, or any of the others.  And I’m not sure why.  When I say I have developmental disabilities I mean autism plus whatever those “complex neurodevelopmental disabilities” were they were always yammering on about, that got diagnosed as DD-NOS once upon a time.  But more than that, I mean I have membership in a community of people who have certain shared experiences and certain values about the world.