[lg policy] Choice of words can mean a lot for people with disabilities

Harold Schiffman hfsclpp at gmail.com
Mon Feb 23 16:12:53 UTC 2015

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 / rking at duluthnews.com)
Choice of words can mean a lot for people with disabilities

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

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

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

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

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.”


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