By Rose Hoban
Some of the decades-old language in North Carolina’s state laws sound more like insults from a schoolyard bully rather than precise descriptions of medical conditions. But thanks to the painstaking work of a state commission, at least some of that terminology will change come October.
For example, right now, North Carolina guardianship laws refer to people who are “mentally retarded.” Other statutes still refer to people being “lunatic.”
“Words have meaning, words have power,” said Sen. Tamara Barringer, one of the sponsors of Senate Bill 768 at a meeting of the Senate Rules committee June 6. “We’ve only begun to eliminate words like retarded and lunacy and other archaic and offensive language that needs to come out of our statute.”
Barringer is one of two legislators who sit on the North Carolina General Statutes Commission, an obscure, but important group that reviews what’s on the books in North Carolina law.
Last year, the commission, which consists of a delegates from each of North Carolina’s six law schools, members of the state bar association, a state representative, a state senator and one public member, decided to look at the issue of how the state’s laws talk about people with mental health disabilities.
It was Barringer who brought the topic of “people first” language to their attention, said Sabra Faires, the commission’s public member. The concept is simple: Refer to people with a mental or physical health problem as a “person with…” rather than simply using the description of the problem to describe the individual.
Was: “a diabetic” Now: a person with diabetes
Was: “mentally retarded” Now: someone with an intellectual disability
Was: “wheelchair-bound” Now: uses a wheelchair
“It was described as a national effort to eliminate language from statute that stigmatizes people or could be considered pejorative, so that you look at the person and not the condition,” said Faires.
Evolution of terms
“Back in like the 1920s, 1930s, 1940, those were words that were medically defined,” said Julia Adams, a lobbyist who represents an array of disability organizations at the legislature. She also has a disability.
“Since then as medicine has evolved and as the disability community has evolved and claimed our rights, claimed our history and culture… one of the things we really needed to do next was say, ‘These words are not acceptable, we’re not going to use them, we’re going to get rid of them,’” she said.
As far back as the late 1970s, disability experts within the World Health Organization were discussing how different terms were becoming “debased,” and their meanings were changing.
Part of the concern was that as terms blurred, the precision about a diagnosis could also become blurry. So, the term “mental retardation” held on, but as the disability rights movement grew, the impulse to move to less stigmatizing language took hold.
Nonetheless, official language was slow to follow the lead of disability advocates.
As late as 2007, the national group, the American Association on Intellectual and Developmental Disabilities, was still known as the American Association on Mental Retardation.
In 2009, Congress passed Rosa’s Law, which replaced the words “mental retardation” with “intellectual disability” in federal statutes.
It was 2013 before the American Psychiatric Association updated its Diagnostic and Statistical Manual of Mental Disorders, the handbook used by every psychiatric and psychological professional to help determine the diagnosis of someone with a behavioral health problem. Until then, the handbook referred to “intellectual developmental disorder” as “mental retardation,” even though many people in the disability community had long since moved on.
“It seems like a noble goal to prefer to use more respectful terms and I see the appeal of people first, putting the person first, instead of, you know, the disability and just really emphasizing their personhood,” said David Unwin, an attorney in the legislative Bill Drafting Division who worked dozens of hours to draft S768.
Before this project, Unwin said he wasn’t familiar with the concept of people first, but it came home for him.
“I absolutely thought… about what lessons I can learn from this personally.”
Evolution of laws
Making changes to the language in statute is more complicated than it might appear at first blush. Even though there are computer programs to search for terms, it can be tedious work to make cross-referencing laws agree with one another and find the right terms so that the law continues to mean the same thing, commission-member Faires explained.
She said the primary term they wanted to change was “mental retardation,” but as Unwin and other staff at the Bill Drafting Division combed through each section of North Carolina’s laws, they noted other places where there could be changes.
“One chunk of statutes might address statutes that address being ‘mentally retarded’ as opposed to being ‘intellectually disabled,’” Faires said, noting that at multiple meetings, members of the commission had to pore over subsequent drafts of changes.
That was after legislative staff had spent dozens of hours picking through the terms and craft acceptable alternatives.
The product of all that work was a bill that was 33 pages long; Faires said it’s only the first installment.
“We have other sets of statutes that we haven’t finished going through to make the changes and some of that is because we weren’t sure what the right replacement was,” she said. “In some cases, we also work with agencies and anyone who can conceivably be affected by these bills.”
And then all the terms and the laws have to jive with federal statutes.
“The level of detail is hard to describe,” Faires said.
Euphemism treadmill
People with intellectual disabilities are gaining visibility with television shows, careers in the fashion industry and increased visibility in the workplace and on college campuses. The hope is that as more prominent advocates confront and erode stigma, the hurtful words to describe disabilities will lose their punch.
[sponsor]But changing hearts may be harder than just changing words said noted linguist Geoffrey Nunberg, who teaches at the UC Berkeley School of Information. Terms describing people with intellectual problems have long been words used to demean, he said, and people start on the schoolyard.
“Look, what’s the first swear word that kids learn? It’s ‘stupid,’” he said. “It’s the first word that parents tell kids not to say, ‘We don’t call people stupid,’ and only afterward do you learn all the ethnic insults.”
Nunberg posited that this is in part because society is structured to reward intelligence and achievement and to punish its absence.
“Low intelligence is regarded by a lot of people as stigmatized, less desirable,” he said.
While Nunberg lauded the effort to replace statutory terms, he also struck a cautionary tone about how long the new terms might be usable, because language evolves to catch up with persistent stigma, something he referred to as a “euphemism treadmill.”
“The words are introduced, particularly in modern times, as a clinical definition and soon enough the clinical word becomes the common name of the category and is … tainted with all the prejudices and stereotypes of the persons associated with the category,” he said.
For example, he noted that to denote age, the word used to be “old,” replaced by “elderly,” which was replaced by “senior,” which is now also losing favor.
“There’s some likelihood that whatever you come up with, unless it’s a mouthful of a euphemism that no one can really pronounce, is going to eventually be tainted by the stereotypes that you were trying to purge when you introduced the new term,” he said.
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When you get through changing the language, it might be useful if you can actually get the Department of Health Service Regulation, under DHHSNC, to address the issues of people living in family care homes who no longer have their own guardianship. I have filed complaint after complaint over the past 10 years—in writing to DHSR, by phone to DHSR, to the ombudsman posted in every family care home—and nothing has ever been addressed. So I finally gave up after a guardian in Weaverville, NC filed against the NC Psychology Licensing Board as I had petitioned the Polk County Clerk of Court to have my client’s case moved to Henderson county so she could simply bring before the court a petition to have some of her guardianship restored as her health had improved. This was being recommended by the other mental health professionals also working with the client. However, the guardian in Weaverville didn’t see it that way at all.
So, how many $$$$ did an attorney and the guardian make off the loss of the client’s guardianship? No one will give me an answer. NC Disability Rights could not be bothered to help. Once you lose your guardianship, you NEVER get an opportunity to have it reconsidered. THAT’S THE CRIME. Not the wording of the law. So, changing the language of the law looks pretty lame in terms of how people’s guardianship is taken. Marsha V. Hammond, PhD, Licensed Psychologist, Asheville, NC