The Finnish poet Tua Forsstrom once wrote “nothing terrifies us more than the godforsaken places” but I don’t think it’s true. I think disability frightens people even more than death or a profane landscape with goblins. A wheelchair or a blind man scares the pants off of most folks. They’re not even circumspect about it. “I think if I had to ride around in a chair like you, I’d have to kill myself” is a phrase heard often by my paralyzed friends. I kid you not. It’s in circulation, this idea that disability is worse than dying. Once, riding in a cab in New York the driver told me I must be the victim of voodoo. My blindness was living evidence of demonism. His subtext was clear: I’d be better off dead.
Lately we’ve seen several instances of disability murder—from Japan to California to the Middle East. From ISIS murdering children with Down Syndrome to a ceremonial garden party where tastefully dressed men and women say goodbye to their hostess who’s decided to end her life because she has Lou Gehrig’s disease, the idea that disabled lives ain’t worth living is absolutely everywhere and largely unchallenged. Of course there are plenty of us in disability circles who cry foul. We ask on social media why the news reporting is so ubiquitously one sided; why disability life remains so undervalued in our media. How frustrating it is for those of us who raise this question, since we already know the answer. We’re locked out of television networks; under represented in even the progressive press. Where’s the disability writer for The Nation or Mother Jones?
In our absence networks treat disability almost exclusively as inspiration. Recently NBC’s “Today Show” raised a guide dog puppy “on air” as a year long feature. While this was engaging the program never explored what blindness in America means, how real blind people live, what they do, how they do it. The treatment of the guide dog puppy was reduced to what we in the disability rights community call “inspiration porn” which is to say it was designed explicitly to make able bodied people feel good. That sweet Labrador puppy would soon change a blind person’s life. Fair enough but they missed the chance to interview blind computer designers, attorneys, school teachers—you name it. Who’d know blind people aren’t passively sitting in dark rooms awaiting the gift of dogs who’ll save their lives? Who’d know blind lives aren’t summed up by dogs?
When able bodied people don’t understand the richness and beauty of disabled lives they remain convinced disability is a calamity. Sometimes I think we should just drop the word disability and use calamity instead. Calamity Parking. Calamity seating. Calamity services.
Imagine the conversations. “How did you become calamitized?” “Oh, I played with dark magic…” Or: “God grew tired of me.”
I’m closing with a link to this terrific interview with disability activist John Kelly over at the website of Not Dead Yet. Disabled lives are not merely under represented in the mainstream, they’re actually under attack in movies and TV shows that suggest our deaths are better than our lives.