Words have power, as any television anchor knows, which is why the 200 people who gathered recently in a conference room at the Quality Inn at 1 S. Halsted St. had strong views on what common words used by the news media mean to them. Take the word ”blinding,” as in ”the Midwest has been hit by blinding snow.” Or ”paralyzed,” as in ”O`Hare Airport has been completely paralyzed by the storm.” Or ”crippled,” as in ”highways have been crippled by the weather.”
”That is loaded language,” said the guest speaker. There was applause.
She was talking about the use of physical disabilities to describe natural disasters, crop failures, stock declines and other problems. Such usages, she said, put down people with disabilities. They link them to failure. To defuse such metaphors is one mission of Access Living, a Chicago organization for persons with physical disabilities. Its annual meeting–an evening of canapes, coffee and spirited discussion–was for people who think of themselves not as victims but, if a word must be used, as ”survivors.”
Applause went to president Marca Bristo for her work in furthering the basic premise of Access Living, that ”all persons, regardless of disabilities or vocational capabilities, have the right and responsibility to determine the direction of their own lives, and to fully and meaningfully participate as equal members of society.” But the firebrand of the evening was guest speaker Mary Johnson. ”What really disables people are physical barriers and public attitudes,” she began. ”The media never see this as an issue of personal discrimination. It is.”
The evening had considerable anger. Many in the audience were mad, just as people without disabilities would be if the CTA bought buses with doors six feet off the curb, if public museums made all their entranceways six inches wide or if most apartments had dollhouse-sized bathrooms. There also was a feeling that the time has come to do away with negative public images.
For seven years, Johnson has been making such points as editor of the Disability Rag in her home town of Louisville, Ky. As a way of framing the struggle for disability rights, the 40-page magazine, published every two months, encourages people with disabilities to borrow strategies developed over the last 30 years by the nation`s minorities, especially blacks. Its motto: ”Start reading the Rag and start to think.” As editor Johnson puts it: ”A lot of people say our phrase `disability cool` is like `black is beautiful.` I hope that`s true. We are trying to show that being disabled does not have to be something yucko. We need that in the disability-rights movement.”
The Rag shuns ”pluck stories.” Though persons who are relentlessly cheerful as they ”beat the odds” and surmount personal challenges may be favorites of other media, the Rag calls them ”super-crips.” Since persons without disabilities do not have to be cheerful, brave, plucky, smiling or inspirational (or, as one TV news segment calls them, ”Someone You Should Know”), why should such standards be forced on persons with disabilities, Johnson asks. Such inspirational histories imply that people with disabilities have only two choices–to become superheroes or lapse into ”poor Joe who can`t do anything,” she says.
Instead, the Rag (Box 145, Louisville, Ky. 40201, $9 a year) offers 22,000 readers an insider`s view of such concerns as abuse, attendant care, rights information, faith healers, telethons, poster children, Jerry Lewis and Richard Simmons, whose ”simplistic ebulliency” in promoting exercise spas for the medically afflicted ”fosters two myths–that people with disabilities require constant medical supervision and have a higher risk of injury. Both are false.”
To the Rag, people with disabilities are people–and should be treated as such. To that end, the Rag covers new concepts, such as ”disability cool, slinging a pack over one handle of your wheelchair, just like college kids.” It advises ”wheelies”–how to jump curbs. It talks of ”the Respirator Women” and how their breathing ”could suddenly seem sexy in a way that dragging on a Virginia Slims never could, when at the end of that tube there flashed the briefest, most spectacular of smiles.” In a world ill-adapted to persons with disabilities, much material is practical: The high prices of equipment and housing. Inaccessible restaurants, theaters and transportation. Job discrimination. Segregation.
There also is another message, italicized in a recent issue: ”I know my own worth, and those who choose not to see it are the losers.”
By most estimates, persons with disabilities comprise 14 per cent of the United States population, in a sense. Yet, as recently as 15 years ago, most physically disabled people were relegated to family care or institutionalized. They rarely were seen on streets because of curbs and other barriers. Public attitude dismissed the possibility that disabled people could lead normal lives.
Starting in the 1970s, an independent living movement emerged. Led by a California group that set up a non-residential living center to help disabled people reach the goals of independence and dignity, the idea led to 165 such centers across the U.S. In June, 1980, Chicago`s Access Living center opened, funded with $200,000 in state and federal funds, plus support from the Rehabilitation Institute and its medical director, Dr. Henry Betts.
”Henry,” says president Bristo, ”has been one of my personal friends and tutors. He has gone out of his way to help me learn. I was a nurse, with little experience in management, none in fundraising. He introduces me to people and he paves the way when we`re trying to make a case.”
Now one of several hundred such local organizations across the country, Access Living helps oversee the daily lives of 1,549 persons with
disabilities, a caseload that includes spinal-cord injuries, cerebral palsy, multiple sclerosis, visual and hearing impairments. Its loft space at 815 W. Van Buren St. also provides office services and meeting rooms for other Chicago groups of disabled persons. One recent boost was from the Chicago Department on Aging and Disability, a $250,000 case-management grant to pull together such services as home-delivered meals, transport to medical facilities, homemaker services, independent-living skills training, CTA special services and public-awareness programs.
Working with a budget of $1 million, Access Living now employs 33 full-or part-time staffers, two of whom recently married one another. ”It was quite a neat moment,” says Bristo. ”At the wedding, they were asked, `What`s the major challenge?`. Both said, `The honeymoon.` ”
Several months ago, in a friendly way, Access Living cut its ties to the Rehabilitation Institute, reaching its own goal of independence. ”It`s been an exciting year. We wanted control over our lives. Now this organization is under the control of people with disabilities. We are now an independent independent-living center,” says Bristo, who grew up near Cooperstown, N.Y., studied sociology at Beloit College and trained as a nurse at Rush Presbyterian St. Luke`s Medical Center.
One summer day in 1977, she was walking a jetty near Pratt Avenue Beach when a friend`s dog knocked her sneaker in the lake. The water looked deep. She dove in, smashed against the shallow bottom and broke her back. She was paralyzed from the chest down.
”After my injury, I spent four months in the Rehabilitation Institute of Chicago,” she said. ”When it came time to be discharged, I didn`t really have a home. My family wasn`t from Chicago. My apartment wasn`t accessible. My belongings had been packed and I had to look for a place to live.
”There was no place I could get assistance in locating accessible housing. I was no longer able to live in brownstones with lower rents. That was my first awareness of the peripheral problems. I didn`t really relate to it politically or as a civil-rights issue. To me it was a matter of survival.”
Other experiences convinced her that disabled people needed to be part of the rehabilitation process. Working in a women`s health-care center, she found incoming patients with disabilities were automatically sent to her, even when she was not the most appropriate person to treat them. Checking records, she found another strange lapse. ”None of the questions gynecologists normally ask were filled in,” she says. ”The staff just assumed these patients had no sex life.”
Doctors, she concluded, must be taught about such non-medical matters as guilt feelings and job worries. They need to know about employment problems and Social Security benefits. Most people with disabilities want employment. But if their first job does not work out, they face economic doom. Once off Social Security rolls, it is almost impossible to get back on.
Chicago, adds Bristo, is the least-adapted major city in the country for transportation needs. At present, no CTA buses have wheelchair lifts. Few L or subway stations have elevators. Housing, especially space with such access features as ramps, wide doorways, large bathrooms, grab bars and reachable kitchen cupboards, is in short supply.
Another problem is ”street furniture,” unexpected obstacles such as low-hanging iron fixtures, a menace to foreheads of people who are blind. Deaf persons watching television understand programs through closed captioning, but miss news flashes or weather emergencies unless stations run crawl bulletins at the bottom of the screen. Bus services for disabled persons rarely run beyond daylight hours, making evening events hard to reach.
Without independence, relationships come under strain. ”You can`t always ask your friends to provide transportation,” says Bristo. Nor do public attitudes help. One Chicago psychoanalyst, who is blind, reports that, when he dines in restaurants, waiters invariably ask his wife, ”And what will he have?”
To bring such patronizing ways to public attention, and perhaps change them, Access Living commissioned eight adults with disabilities, working with TV producer Jim Brooks, to tape a 30-minute documentary. Gripes were encouraged in brain-storming sessions. ”I spent an hour doing my hair,” said Paulette Patterson. ”Then a man came up, patted me on the head and messed it all up. He tried to do it again. I snapped my head away. You wouldn`t do that to an able-bodied person.”
The project, to be finished next month, will include sequences at the Museum of Science and Industry, the lakefront, a nursing home and a basketball game. ”It was no good,” reported one class member, speaking for those in wheelchairs. ”They put us way in the back. We could hardly see.”
”The independent-living movement,” says Bristo, ”is really a self-determination movement. It preaches that the way to empowerment is through teaching people the skills they need to live independently. The best teachers are those who have `been there.` We are not unique. Other self-help movements have had the same kind of history.”
That might lead to more constructive attention to a segment of society once called ”the invisible people.” As a Rag writer put it, in the January issue: ”The only way the public has ever known us, as disabled people, has been through emotional images. Negative ones. The pitiful telethon child. The tragic but courageous victim of the news feature. Nothing but emotion. Wrong emotion.”
Better, she said, would be ”a cultural statement that can take that negative image of the telethon child`s personal tragedy, turn it around, and put strength and power and style where tragedy and dependency had been.”
