At ICS, we have a language exercise we make part of our trainings and orientations. We ask the group in front of us to come up with as many terms as they can to describe people with disabilities. “Don’t hold back,” we tell them. “Give us the good, the bad, and the ugly.”
Naturally, many people are too polite at first, but eventually the words start to flow: “gimp,” “cripple,” “lame,” “handicapped,” “disabled,” “confined to a wheelchair,” “retard,” “special,” “differently abled” and on and on. We’ve heard most of them before, but sometimes, even we are surprised by a new term. A new one on me was “cheese bus” or “short bus,” which comes from the form of transportation typically provided to school children with disabilities.
Then we go back and ask our trainees to critique the words they’ve just given us. Some are obviously bad—hurtful, outdated, something no one would want to be called. But some of these terms are more difficult to assess. Who doesn’t want to be thought of as “special?” Many people with Down syndrome, that’s who! How about “differently abled” or “physically challenged?” You might have thought these “politically correct” terms were approved of by the disability community. You would be wrong. Most people with disabilities find these phrases to be just as condescending and euphemistic as “special.”
The push to change the way we speak about people with disabilities is not just a few years but—this may surprise you—decades old; it precedes the Americans with Disabilities Act of 1990 by some 20 years. An outgrowth of the disability rights movement of the late 1960s, people-first language (not “disabled people” but “people with disabilities”) was intended to help change the deeply ingrained perception that disability is an illness, or that people suffer from it, or that people with disabilities are sad or pathetic or heroic or “inspirational.” People with disabilities do not want to be defined by a limitation or physical or medical condition any more than anyone else does. Disability is just one part of the make-up of a whole person.
This difference becomes clear when you compare the phrases “the cripple” and “the person with a disability.” It’s the difference between being wholly defined by a condition and merely having the condition as one identifying attribute. When in doubt, it’s always a good idea to put the person first—woman with multiple sclerosis, man who has cancer, person with AIDS—before his or her disability.
Then there are the terms “handicapped” and “disabled, ” both of which Arizona just outlawed from all state communications about people with disabilities, including parking signs. (“Instead of placing a ‘permanently disabled’ removable windshield placard on a rear-view mirror,” the Phoenix New Times reports, “people will be attaching a ‘permanent disability’ windshield placard to the mirror.”) But what’s wrong with those words—disabled and handicapped? For one thing, like the seriously offensive “crippled,” these terms hide the persons they refer to behind the screen of their disabilities. Remember: put the person first.
But is there anything really so bad about the term “handicap” as opposed to “disability?” After all, in the whole rest of the country, they still call it “handicap parking,” don’t they? I put it to you this way: A disability is something that happens to you as an event—an accident, a birth defect, a disease—which causes a limitation that prevents you from performing major life functions. I had polio as a child and, as a result, I have my disability. I have learned to live with it and it has been incorporated into my self-identity. A handicap, on the other hand, is an external barrier in society that gets in the way of my performing major life functions. If my van isn’t working, I can’t get to my job. If my voice-activated computer breaks down, or if they take away my personal care assistant, I can’t actually do my job. If I can’t get into a building because of stairs, or go above ground floor because of a lack of elevators, I can’t fully participate in life. These are handicaps. It’s also interesting to me that “handicap” comes from an old English phrase that means “cap in hand,” which was once the only way people with disabilities were expected to survive on their own.
If there’s one phrase that really bothers me whenever I see it or hear it, it’s “wheelchair-bound.” I am far from alone among people who use a wheelchair to feel this way. We have been pointing out the ridiculousness of this phrase for decades now. When I hear “wheelchair-bound,” I say to myself, what does that even mean? I am not bound to my wheelchair. It’s not a part of me. It’s a part of the technical stuff, like a ventilator or wheelchair van that enables me to get around and lead a full and active life. My wheelchair does not bind me; it liberates me.
This is not a new critique of the phrase “wheelchair-bound.” A guide to language about disability for journalists that first appeared in 1984 warned against using it, suggesting the term “wheelchair user” instead. But this is a phrase that is frustratingly persistent.
Recently, I was part of a NY1 news story about a program ICS and the New York Lawyers for the Public Interest are involved in to promote accessibility for women who use wheelchairs at Ob-Gyn facilities. We were very pleased with the story–with one exception. My heart sank when I saw that the piece had been given a title that referred to “Wheelchair-Bound Women.” We called the newsroom and told them the problem. It was too late to change the title on the story that had already been shown on the air, but the video online, I’m pleased to say, no longer goes under that offending phrase (though, alas, it’s spoken in the report).
So here we are, 14 years into the 21st century, 24 years after passage of the ADA, and we are still confronting barriers in attitudes and inaccessible buildings, including health care facilities. And we are still confronting media that describe people with disabilities as “wheelchair-bound,” and “handicapped,” and as “pathetic,” “heroic,” “sufferers.” It has to change, and it’s still the job of activists and advocates, when the society or the media get it wrong, to get in their face and make them get it right.