Sticks and stones can break my bones but words will never hurt me,” the old schoolyard chant goes.
Yet, while the lesson it was meant to instill about not taking taunts and teases to heart was a positive one, our society has come to another conclusion: words can hurt.
Emily Rogers (pictured above) is the Self Advocacy Coordinator for The Arc of Washington State, which advocates for people with developmental disabilities. As a child growing up with cerebral palsy, she recalls being teased by schoolmates.
“Kids get teased a lot, any kid will get teased, but on occasion it seemed that in some regards I got teased more and with more bite to it,” she says.
It is no longer acceptable, as it was half a century ago in at least some places, to unthinkingly toss off a racial epithet like the notorious “N-word” (now so taboo even discussing it requires a euphemism).
Still, one group that continues to routinely face insensitive language is people with disabilities. Most people still see nothing wrong with saying: “Joe is wheelchair-bound” or “Sarah is retarded.” But those are terms that make it harder for others to see Joe and Sarah, first and foremost, as just people.
“If you’re going to hear a couple of phrases that people are most upset about, they would be ‘retarded,’ ‘handicapped.’ I guess the third thing I would say is ‘wheelchair bound,’ ” says David Lord, Director of Public Policy for Disability Rights Washington.
“You’re a wheelchair user but you’re not bound to it, like basically somebody ties you into it. You can get in and out. It’s actually a tool, something that liberates you, as opposed to being bound to it.”
The movement to change the way people talk about disabilities and the people who live with them has been around for decades. Groups like the National Easter Seal Society
and the National Rehabilitation Association have been writing about respectful terminology for talking about disabilities since at least the mid-1980s. In 1992, John Folkins of the American Speech-Language-Hearing Association’s publications board put out extensive guidance on the subject as a resource for editors and authors.
Still, the movement really gained traction when, in 2005, Washington state led the way in adopting what has come to be known as “People-First Language” in the state’s laws and regulations.
Rogers was one of the principal advocates for the bill, which replaces older terms in laws when they come up for renewal or revision. Lord explains, “Over the last few years we’ve been going through a process of changing all of our statutes and all of our regulations to language that’s respectful to people with disabilities.”
He says some examples are using the term “people with disabilities” and not “disabled people” or “handicapped.” Lord says the coalition to lobby for that change was spearheaded by people with developmental disabilities who had a particular dislike for the word “retarded.”
Ironically that bill didn’t get rid of that particular word because it continued to be used in federal laws and they wanted to make sure that the change did not cause any confusion.
That was remedied a few years ago when a national bill to discard the term was passed.
Rogers adds that while the real process of change comes through educating people, one by one, she is hopeful that the statute can help affect people’s perception of what is respectful and appropriate.
“It’s not going to come from top-down,” she says, “but rather (through) personal conversations with one another.”
While the movement to change the ways we talk about someone who uses a wheelchair to get around or a person with a developmental disability is making headway, advocates for people-first language face ridicule for promoting “political correctness.”
But Rogers says the real issue is respect.
“So many people that I worked with in the past … have felt really disrespected and really put down and really upset by the use of some of the old terms referring to folks with disabilities,” she says. “It’s a visible reaction that people have to terms like ‘retarded’ and that sort of thing. So, for them it’s very personal and it’s very emotional. Really, the respect issue is huge. Lots of folks with disabilities feel hugely disrespected and almost as if (they’re) second-class citizens because of their life experience.”
The concept of “people-first language” is the idea that disabilities are not people and they do not define who a person is, so the general rule is to not replace personal nouns with disability nouns, like “the schizophrenic,” “stutterers” or “the hearing impaired.”
Instead, advocates say, use terms that emphasize the person rather than the disability by putting the person-noun first, using phrases such as “the lawyer who has dyslexia,” or “people with cleft palate.”
“In terms of people-first language and respectful language, the idea is that the person is going to come first in the way that you speak, and the way that you describe it,” Rogers says. “It’s really about having the disability be the thing that comes after the descriptor of the person.
So there’s sort of a separation – I’m a person, then I have a disability, and then I’m a mom or a dad, or a husband, or whatever it is. As a person with a disability, my value doesn’t come from my disability. It’s part of my life and it’s part of how I experience life, but it’s not me.”
At the same time, Lord acknowledges, not everyone with a disability feels equally strongly about the issue. He says there is no unanimity on which words or phrases are to be avoided
“I hear a lot of people refer to themselves as handicapped. People have different perspectives,” he says. “A lot of people don’t care, and other people think that it’s really important. There’s an approaching consensus on some things. I think there’s probably consensus on the word ‘retarded.’ Fairly recently the medical community figured out that was in the same category as ‘idiot’ or ‘imbecile’ – words that used to be legitimate medical terms that are now obsolete and offensive and slurs. That’s where ‘retarded’ is right now. There’ll be another word some other day.”
From the perspective of Home Care Aides and others who work with people with disabilities, it can be a matter of professionalism, one of those things people learn when they’re in a profession.
How much it matters to a client may be an individual preference. “There’s some things, like how you do a transfer – you can do a transfer right or you can do it wrong,” Lord says. “But there’s also variations – different people have different kinds of views on how they want the transfers done. I think it’s that way with language. It’s good to know and to be sensitive.”
At its core it is a question of respect, on both the individual and societal levels. “I think that words have huge power and that we need to be conscious about how we speak about one another, including people with disabilities,” Rogers adds. “I’m hopeful that in changing the way that we speak that we take on a different angle. For me the difference in language means that everybody has the same opportunities.”