Learning to celebrate disability culture

NATION

OVER THE PAST SEVERAL DECADES—EVEN BEFORE the Americans With Disabilities Act (ADA) of 1990, and more emphatically ever since—the idea of disability shifted from a medical signifier to an emblem of cultural identity. People will tell you, in various ways, “Don’t say I have ‘special needs’ or am ‘physically challenged.’ Don’t even call me a ‘person with a disability.’ I’m a disabled person”—with disabled first and foremost, imparting an unapologetic pride.

Pride in disability isn’t new—there have been Disability Pride parades at least since the early 1990s—but the language preference and the culture and identity shift it reflects are new. At least, to me. My generation of activists preferred “person first” language, which is why the law isn’t called the Disabled Americans Act. Clunky and awkward as it sounds, the phrase people with disabilities became the standard. It emphasized our humanity, we thought.

But the new generation has pointed out the error in that kind of thinking—that putting disabled first is a badge of honor. In fact, it’s become so widely accepted that it practically feels required. No hesitancy or shyness allowed.

As a lifelong disabled person, I’m ashamed to admit that I struggled a bit to embrace this concept.

I was born 60 years ago with a form of spinal muscular atrophy, a progressive neuromuscular weakness. I’ve never walked or stood. Today, I no longer have the strength to feed myself or hold a pencil; I’m writing this with voice-recognition software. My increasing weakness is not something I like, but if I think about it, I realize that that doesn’t mean I’d prefer to be nondisabled. I like myself, I like my life, and I honestly can’t imagine existing in any other way. I’m not ashamed of my disability. But am I culturally disabled? Do I want to proclaim my disability as a primary identity marker?

WHEN I WAS GROWING UP in the 1960s and ’70s, my parents insisted I could be anything I wanted when I grew up. It wasn’t true, of course, but this was a much better message than the unwittingly heartless prognosis of gloom and doom that some of my peers received. My mom and dad went to great pains to make sure my upbringing was as “normal”—or at least similar to my nondisabled brother’s—as possible. They fought to have me mainstreamed in regular schools years before the integration of disabled students became law. As a result, I never knew other “handicapped ki