“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?