“I am regularly faced with the dilemma of how to make stories about disabilities resonate outside the disability community” journalist David Perry, aka @Lollardfish tweeted yesterday. Perry is one of the few nondisabled freelancers I know of who regularly reports on disability issues in major media outlets and I greatly respect his work even if I disagree with him occasionally. (He also tweeted that in terms of the negative reactions nondisabled people have toward disabled people, pity was preferable to indifference, which I’m not so sure about.) That aside, I’m a big fan of his and am happy to see a savvy nondisabled writer “get” or even care about disability culture and politics without expecting a pat on the back for it.
It’s so rare. Like, a blizzard in July rare, or a disabled character in a movie played by an actual disabled person rare.
I thought a long time about his statement on the “dilemma” of getting nondisabled people to pay attention to our stories. This is of course a sentiment expressed by disabled people constantly (me included, usually in a hotheaded, bitter fashion with lots of cursing) and after reading his tweet I just thought “Well… Yeah.” Because we as disabled people are accustomed to being ignored by the majority. We’ve been aware of this for a very very long time and it’s exhausting. We know we’re not considered typical or commonplace despite making up about 15% of the world’s population. Instead we’re relegated to “special,” status- irregular, unnatural, abnormal. Something to be feared, prevented and eliminated. And if anyone has any doubts about that, they can look to the recent onslaught of articles examining anti-vax parents who mistakenly believe that 1) vaccines cause Autism and 2) A dead child is preferable to an Autistic child. You might also notice the glaring omission in these articles of actual Autistic children and adults voicing what it’s like for them to be consistently bombarded by the ableist viewpoint that their life isn’t worth living. And it’s not that Autistic activists aren’t out there fighting these incredibly dangerous and misguided ideas- they are, fiercely- but our society isn’t interested in the disabled perspective, even when we’re discussing disability. “Nothing About Us Without Us” is generally speaking, just “Without Us.”
I’ve seen countless examples of this, but one area that’s particularly troubling is the huge number of disability organizations and offices run by nondisabled people. This includes advocacy organizations, college disability centers, and most offensive to me, disability rights agencies. The notion that it might be inappropriate for a nondisabled person to presume they can speak on the behalf of disabled people isn’t questioned. While it would be a slight improvement if the directors of these places had a personal history with the disability community, (the majority of the ones I’ve spoken with have not and don’t even see that as a problem), the fact remains that disabled people are the most qualified experts on disability. We know more about disability than nondisabled people because we live it every day. It’s our culture and for many of us, a huge part of our identity. We should be leading these organizations, not just patronizing them. And it shouldn’t be a shock to nondisabled executive directors of disability agencies that we might not appreciate them being there.
So, how do we convince the nondisabled public that our stories are crucial and worth listening to? How do we wake them up to the cold truth that perhaps our stories don’t resonate with them because their deeply ingrained ableism makes them automatically tune us out? How do we resolve this Nondisabled Dilemma?
Criptiques 
Reblogged this on Melissa Fields, Autist and commented:
Yes, this!!!
I’m disabled and part of a planning committee for an upcoming disability conference. I’m the only actually disabled person on this committee. Every time I have told everyone else we need to have disabled speakers, I keep being given excuses why we can’t. They finally agreed that we have to have some disabled presenters but we’re being treated like extra accessories. Thanks for writing this.
Criptiques would LOVE to come to the conference and throw down some crip activism. I wish I could say I was surprised by what you’re experiencing. Sending solidarity.
I imagine quite a few conferences like this are set up by committees assigned to do so by higher ups whose main concern is scheduling, and possibly prestige. If you can’t right now achieve those while hosting a disability conference that includes disabled speakers, then don’t do the conference. Postpone it. Announce an indefinite postponement of the event until a proper conference can be arranged. Use the time for the whole committee to go back to basics and figure all of it out, the philosophy and the logistics. Report to the higher ups that the hosting institution simply can’t host such a laughable thing as a disability conference without disability. It’s humiliating … to the institution as well as the people excluded!
Reblogged this on wallacerunnymede and commented:
Great article. Very far from a conciliatory “neo-corporatist” middle-ground-ism.
Possible example: I don’t know who originated the insulting term “differently abled,” but I would bet that a lot of the people putting the wheels of that one in motion were not disabled. Phil Cohen’s essay “It’s Racism Wot Dunnit, Sir” gives a wonderfully witty summary of the “Whig Theory of Race Relations.” It seems that much of the patronising rhetoric in circulation (differently abled, aspie, “the” disabled community, diversity, neurodiversity) is also Whiggish in tone. I need to write in detail about this later.
I am sorry for the inappropriate choice of words. I meant to express the notion of “putting things into motion,” rather than the inadvertent pun. I know that consequences are at least as important as intentions (I think even more important, in this case), so I apologise.
I have also corrected the wording on my reblog. I appreciate your work on this blog, and I hope my critiques of “respectable” views on disability will be aided by reading your writings.