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Choice of words can mean a lot for people with disabilities

Gunnar Johnson sorts books at Goodwill Industries on Thursday afternoon. Johnson, who has bipolar disorder, has worked a variety of jobs at Goodwill during his seven years there. (Bob King / / 2
Gunnar Johnson uses a scanner to sort books at Goodwill Industries on Thursday afternoon. Johnson has worked at Goodwill for seven years. (Bob King / / 2

Until you hear insiders say people with disabilities are the largest minority group in the country, it can be difficult to think of them in that way.

Our concept of a minority usually is narrower. We think of people of a single race or a single religious belief, whereas people with disabilities are a minority group that includes people from all of those other groups.  

But people with disabilities historically have been defined by society at large — a key marker in assessing what is and isn’t a minority. Last May, when state officials were touring Duluth and other communities and holding listening sessions to help craft better policies on how the state treats its people with disabilities, there was not a person with a disability on the panel of about 20 members.

“They heard that criticism loud and clear,” said Roberta Cich, executive director of Arc Northland, a supportive services organization for people with disabilities and their families.

Statistics provided by Arc show that disabilities, both from birth and acquired in life, affect 1 in 5 people.

In years past, people with disabilities were institutionalized. That era may have ended, but even today, well-intentioned efforts to accommodate people with disabilities can instead marginalize or belittle them. Thanks in large part to a growing wave of willful self-advocates such as Cich, who is legally blind, the idea of the world revolving busily about a static person with a disability is changing.   

With the state of Minnesota’s ongoing adoption of an Olmstead Plan designed to provide services to people with disabilities in integrated settings, the state and its largest minority group seem to be approaching a watershed moment.

One integral but little-known part of that moment is the slow but gradual adoption of what’s called “person-first language.”

Person-first language replaces hurtful language and labels with language that emphasizes an individual, not their disability.

The concept and effort to instill it into the collective vocabulary has been around for years, some say as many as 25 or more. In 2005, the Minnesota Legislature moved to scrub words such as “mentally retarded” and “handicapped” from state law and replace those references with person-first language.

More than 400 pages of state law were affected by the shift in language.

“It goes a lot further than political correctness,” Cich said. “How you speak influences how you think and vice versa. If you start speaking in a respectful way, you start thinking in a respectful way. For kids today it’s natural for them to say ‘accessible parking spot.’ ”

Call me by my name

Person-first language isn’t necessarily just about labels. Ask Gunnar Johnson what he wants to be called, and the man with bipolar disorder will tell you, “Gunnar.”

Johnson works at Goodwill Industries on Garfield Avenue in the sorting factory’s e-commerce section. Four days a week, he picks through thousands of pounds of books in large boxes. He’s the team leader, and by all appearances he’s respected by his peers.

The books in the best shape are used for e-commerce, for sale on Amazon, while others are sorted to go to the factory’s storefront or one of the 13 other stores across the region.

Johnson moved to Duluth several years ago at the urging of an uncle who is a banker in the city. For Johnson, the pace and opportunity suited him. He moved from his native Burnsville, Minn., and transferred jobs into the Goodwill Industries here.  

At 40, he’s now a homeowner who receives weekly support from a personal care attendant to help with things such as shopping and money management. He’s got aspirations of getting a job in an even more competitive workplace such as Menards. But he credits his seven years at Goodwill’s sheltered workplace with restoring his confidence and self-esteem.

He told his story, and in doing so he revealed heartbreak and vulnerabilities that are common in people who experience severe mental illness. After a childhood filled with youth hockey, his parents’ divorce when he was a teenager triggered years of instability. He was released early from training with the Marines. His vulnerabilities and acting out caused him brought him into courtrooms, both as plaintiff and defendant. But with the right regimen of medications, he has found stability.        

“I am a survivor, not a victim,” Johnson said. “I don’t give up. I might fail, but I always feel like there’s light at the end of the tunnel.”

Like a surprising number of businesses in the vast human services industry, Goodwill Industries in Duluth does not have a policy on person-first language. But after 96 years serving and employing people with disabilities, a distinct person-first culture is ingrained, if not well-defined.

“We take a lot of pride in helping people,” said Kris Olson, assistant director.

She explained that Goodwill features a committee for factory workers to share and deal with workplace issues. Currently, the factory that employs 146 people with disabilities is experiencing some issues with coworkers disrespecting one another. The committee has been charged with developing a poster campaign that will reinforce good relations and hopefully curb instances of disrespect. Olson, too, said that being contacted for this story about person-first language created a lot of discussion in the administration office. An organization that now calls its workforce “consumers” is considering adding a policy on using person-first language.

“They really work hard for people with disabilities,” Johnson said, nailing the person-first terminology. “It’s been a good place to work.”  

Human beings first

If person-first language isn’t about what to call a person directly, then it’s how to talk about people with disabilities in other settings when it’s necessary to do so.

Advocates say there are battles yet to be won on this front.

State government and the education sector still refer to special-education programming, when “nobody wants to be in the special classroom with ‘special’ kids,” Cich said. “Words that weren’t bad to begin with have turned into things that are offensive.”

In practice, children with disabilities no longer are segregated into special-ed classrooms. Rather, they’re integrated as much as possible while receiving additional support in what are called resource centers.

Still, the terminology has yet to be scrubbed. It’s not the only term that sticks out.   

To receive Medicare funding for a wheelchair, a person must identify themselves as “wheelchair-bound.”

“If people with medical equipment don’t use that term, they’re ineligible for funding,” said Erin Fontaine, independent living program manager for AccessNorth, which assists people with disabilities to pursue independent living and meaningful goals. “What is that message sending to you? (That) you’re bound or glued or taped down to the wheelchair.”

But ask people with wheelchairs, Fontaine said, and “they will tell you, ‘This wheelchair is a tool for me to get around. It’s providing me an increase in my independence.’ ”

Person-first language has spread beyond human services and into places such as St. Luke’s  hospital. Lee Ann Harwarth is St. Luke’s director of patient care services, a title that replaced director of nursing for the way it puts patients first. In 35 years, she has seen the transformation from people being called by their malady — a cancer patient or “the gallbladder down the hall” — to being asked upon admittance what the person prefers to be called.

“It’s being sensitive to the paths our customers walk,” Harwarth said. “We’re all human beings, so let’s treat each other that way.”

Person-centered care

At Birch Tree Center, St. Louis County’s new 12-bed urgent care center for people with mental health crises, Lisa Gasner said there was an effort to avoid referring to people who were admitted as “patients.”

“We call them our guests,” said Gasner, the program administrator. “We’ve very mindful of how we label people.”

Birch Tree Center does not have a specific person-first language policy, but it does practice person-centered care, the Olmstead Plan edict that requires providers ensure that people with disabilities take the lead in their treatments, outcomes and future placements. It is no longer OK to attempt to control people with disabilities, Gasner said.    

In another setting, the Birch Tree Center could be viewed as one of the nicest apartment complexes in the city. Its colors are warm and joyful. There’s lush artwork around every corner and a striking stone fireplace. Its amenities are first-class; private bathrooms and walk-in showers in every room. The environment is antithetical to what a person would expect given preconceptions of drab-colored and locked-down facilities for people with mental illness.  

“It is a conscious effort,” Gasner said. “It’s inviting and it’s warm; people are coming out of their rooms to use the living room.”

Inundated but outdated

Experts say the media and their endless search for brevity have contributed to the language used to describe people with disabilities.

The mentally ill.

The disabled.

The crazed.

The sufferer.

The afflicted.  

These all are the sort of words that have made for quick descriptions in headlines. Person-first terminology can be longer and more cumbersome, and it’s also a moving target.

The movement to eliminate the use of the word “retarded” begat “cognitive disability,” which begat “developmental disability.”

“In the last two or three years, ‘intellectual disability’ is preferred,” Fontaine said. “It’s always evolving and changing, and that’s why sometimes it seems new to people hearing it for the first time.”

Laura Birnbaum is a social worker at Arc. She explained that even the term “disability” can be construed as offensive. Everybody is unique. Everybody has barriers in life.  

“Why is it taking so long for people to get it?” she wondered. “Disability is a social construction. It’s really ingrained, and takes a lot of time to start thinking about it outside that social construct.”

Her Arc colleague, Cich, is forgiving, in part because we’ve all grown up in the construct of “disabled” versus “abled.”

“I don’t think people use language we consider archaic and do it out of meanness,” Cich said. “Things change over time; there are a lot of terms used to describe different populations that we don’t use anymore.

“People with disabilities have been behind on that whole bandwagon,” she continued. “It’s the population within our lifetime that is still being institutionalized without having committed any crime. We’ve not been given the rights we should have as U.S. citizens.”