Electric EDGE
Web Edition of
The Ragged Edge
Sept/Oct 1997

Olson's story of AT&T managers' discrimination is our cover story for this issue -- appearing, appropriately enough, in time for the old traditional "hire the handicapped" month -- October.

AT&T, as Olson readily admits, has had a tradition of progressiveness regarding disability and deafness: their TDDs, he says, are the best on the market; AT&T's been cited in a competitor's disability magazine recently as a good company, disability-wise.

What happened? Olson says it's not AT&T as a whole, but only certain managers. He was told his problems at work were his to solve on his own; that the budget was too tight to pay for accommodations; that his timing was bad; that he expected others to change their habits just for him. A superior told him she was simply spontaneous by nature; she couldn't slow down or repeat words.

As this issue was going to press, a report on Olson's complaint came from the Equal Employment Opportunity Commission: they were not going to take his case; he could sue on his own if he chose.

Dean Olson now has to decide if he will sue AT&T. That takes a lot of money, he says, discouraged and frustrated. A lawsuit can eat up years of your life, and there's no guarantee that you'll win.

Many people who've faced discrimination -- like nurses Gloria Moreno and Steve Lentner, whose cases Josie Byzek reports -- have felt the same frustration of facing the long process of fighting for their right to work. Far more incidents of discrimination are never resolved; many cases never even get as far as these three have taken them. Sobering thoughts for a hire-the-handicapped month.

I'd rather die --again
"I'd rather die than live in a nursing home." ADAPT's been saying for years this is how folks really feel. A study in which over half the respondents said they'd be "very unwilling" to live permanently in a nursing home or "would rather die" was reported in early August in major news outlets. The findings were a "surprise," wrote reporters. No surprise to the disability rights movement.

Will statistics corroborating the movement's argument help push attendant service bills through Congress?

Hiring and keeping decent in-home help is the subject of several pieces in this issue of Ragged Edge. Robert Mauro weighs in with science fiction about a PCA that makes things too good to last; reader Peggy Hecker brings up the dirty little secret of using nursing services instead of hiring our own PCAs, a dirty little non-pc secret a lot of us share. She does it because it's hard to find workers paying the wages allowed under the state programs she uses. Will federal legislation change that, as ADAPT hopes? Stay tuned.

U. S. News & World Report joined the summer chorus of those raging at the spiraling cost of "home health" services. We report on their story because it's a particularly good example of pointing a finger at the wrong problem.

Yes, people do try any means at their disposal to avoid nursing homes. But the problem goes both ways: for every person bilking the government, as U. S. News's Philip Longman puts it, there's a story of someone denied services for a ridiculous reason. In our last issue we reported Medicare's tightening the "homebound" rule ("Homebound for real,", D. R. Nation, July/August). This time we have a graphic story of the result.

The real problem is caused by Medicare insisting that everything be "medical" (read: costly) to qualify. The disability rights movement's argued this one for years. To little avail. There's money to be made, you know.

Hecker writes that ventilator dependent, and she gets anxious an unreliable attendant won't show; better use the nursing service, indignities and all, and be sure. She's trying like hell to stay out of a nursing home.

The folks who told researchers they didn't want the nursing home were 3,262 hospitalized patients. Of those, 7 percent said they were "very willing" to live permanently in a nursing home, 19 percent "somewhat willing," 11 percent "somewhat unwilling." Twenty-six percent were "very unwilling"; 30 percent said they'd "rather die." The July issue of the Journal of the American Geriatrics Society reported this data from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment, the largest study of its kind ever conducted.

We in the disability rights movement don't find this data surprising. . Another finding, though, might leave us scratching our heads: those who tended to be more willing to use a nursing home "were younger, better educated or disabled."

This "striking finding" "remains unexplained," said news articles.

It's doubtful real explanations to something this complex ever emerge from typical survey questions. Researchers likely do not know how to even pose the questions.

"I have yet to see a solid scientific study of the attitudes of doctors and other medical professionals toward disability and persons with disabilities," Mainstream magazine editor Bill Stothers writes in his Aug. '97 column, musing on doctors' still-proffered advice to parents to institutionalize disabled children. Nor have in-depth studies been done of disabled peoples' own attitudes to not simply their own disabilities but to how others tell them they should respond. In the study in question, family members and doctors, asked to guess the hospitalized person's feelings about nursing home incarceration, in many cases simply guessed wrong.