Electric EDGE
Web Edition of
The Ragged Edge
Jan/Feb 1998

Electric Edge

Society sees disability through a non-disabled lens.

A person reading a newspaper (or watching John Hockenberry on TV) might hear something about gimp culture, but it doesn't make sense. It's too new.

Getting our vision
to the people

reported by Mary Johnson

"Disability Culture: Eager to Bite the Hands That Would Feed Them" read the headline. The story was by Douglas Martin, and it was in the Sunday The New York Times last June 1.

The story began with an anecdote about Mattel's Share-A-Smile Becky, the doll with the wheelchair. The crips he interviewed told Martin in no uncertain terms what they thought of the idea: "It makes me want to gag," said one.

Martin went on, "The comments signify a new militant attitude among many of the disabled, sometimes including a willingness -- even eagerness -- to bite the hands that would feed them. After decades of fighting for access to everything from colleges to buses, a battle that culminated in 1990 with the passage of the landmark Americans with Disabilities Act, increasing numbers of people with disabilities are forcefully putting forward ideas that might startle many Americans.

"Not only do they criticize the Franklin Delano Roosevelt Memorial for omitting a wheelchair, they point out that the Braille is too high up and too large to read. Far from applauding the customers in wheelchairs shown in television commercials, they grumble that there are no disabled sales clerks. They castigate Christopher Reeve for his campaign for a cure for spinal injury, saying it is unrealistic and offensive to people who have learned to live with their disabilities and indeed thrive on them. They demonstrate against giving doctors the right to assist in suicide, calling that a slippery slope; they grimly point out that Hitler killed 200,000 disabled people before he got around to other groups.

"Perhaps most surprising to conventional thinking is that many say they would reject being cured even if it were possible, explaining that they have a condition, not an illness. ..."

"I saw the headline. I didn't want to read the article."

Nadina LaSpina, activist, professor, disabled woman, sat with New York City disability activist Daniel Robert and me one day last fall and talked about what the larger world has heard about disability culture.

The article LaSpina referred to had been in the Sunday New York Times a few months ago, but she could as easily have been talking of any number of news stories that pop up here and there to report with bemusement about disabled people talking about their "culture" -- or that they weren't slavering for a cure.

New York Times reporter Douglas Martin had originally approached her, LaSpina said, at a Not Dead Yet protest action where LaSpina spoke. He was, she said, looking for a story about a disabled person -- "someone so disabled that, frankly, that people would look at them and think, 'if I were like that, I'd want to die,' " LaSpina said. His aim, she thought, was to show readers that this person actually wanted to live.

LaSpina said she tried to convince him there was more to it than that. As a way to educate him, she invited him to sit in on the disability culture class she teaches at New York City's New School for Social Research. Participants in the class virtually all have disabilities.

"What we were really talking about in class was identity, not the physical reality of being disabled," LaSpina continued. "But I don't think that even after sitting in on the course he 'got it.' "

"We actually tried very hard in that class to explain what we meant by saying we were 'proud of being disabled,' " LaSpina said. But Martin "couldn't get beyond the 'doesn't want to be cured' part."

It's the thing about cure that gets them every time, said LaSpina. "We're hitting them where it hurts. They think they're so lucky and we're the unlucky ones, because they have their health. They simply don't believe that we can be happy as we are.

"They interpret our saying we're not waiting to be cured as a 'sour grapes' kind of answer," she said. "They figure that since we know they can't be cured, we're just saying we don't want it anyway. Or they figure that since we've been disabled all our lives we just don't know what we're missing."

How will disability culture be disseminated to the masses if reporters don't "get it?" "It's not going to be disseminated to the masses," said Robert. "People will get the Christopher Reeve view of disability," he said " -- because that's what the masses want to believe," LaSpina added. They wanted to believe "we're an inspiration," said Robert, citing a friend of his from the days before he became disabled. The friend sends him news clippings of inspirational crips.

"I'm not really that interested in reaching the masses in my disabilities studies course," said LaSpina. "I want to reach the disabled people, young disabled people. I mostly get people who have disabilities, and I like it that way.

"When I started teaching this course, I was told, 'you'll have to sell it to nondisabled people; post notices in the physical therapy department, the special ed and rehab departments.'

"But that's not what I want," she continued. "Disability studies is very much like women's studies, African American studies, Asian studies. In women's studies courses you don't look for sexist pigs to convert to the cause" nor, she would add, do African American studies courses look to whites to fill them. This isn't about converting nondisabled people, she pointed out. " 'It's about identity."

LaSpina did finally read Martin's article. Her final assessment? It could have been worse. "I usually run the other way with reporters," she admitted. She felt frustrated whenever she talked to them. "I try so hard to get my point across, and I think I do, and then . . ." She waved the article in the air. "They just don't 'get it.' "

Letters on the piece which appeared a few days later in the Times "were either from disabled people insisting "that article "wasn't talking about me! I'm not biting any hands!" -- or they were from some nondisabled person saying "what ungrateful wretches!" Robert said.

He became pensive. "Yet none of us [in the movement] wrote any letters to the Times reinforcing our viewpoint." At the time, Robert said, he was recovering from surgery.

"We all have so little time," he said. He talked about his attendant quitting, about what he'd gone through to hire a new one who was, he hoped, dependable.

"Last weekend I was going to interview another new guy. He said he was going to come Friday," Robert recounted. "Somebody rang my intercom at the appointed hour, and I told him, 'I'm going to buzz you in but it's going to take a few minutes.' Robert was still finishing up getting ready to see people. "He never showed," Robert went on. "I guess that me just saying 'I'm not ready' was enough to change his mind."

"It's tough," LaSpina added. "Very tough. It's a very hard job to get an attendant -- interviewing them, hiring them, training them, keeping them. . . ."

Robert continues, "I live with a level of anxiety that keeps being generated every weekend when I don't know whether I'll have an attendant or not. 'What am I going to do this weekend if nobody shows?'"

"If people want to know what's happening with us crips, that's what's happening," said Robert. "This kind of stuff is always happening, to all of us." Letters to newspapers about coverage lodged far down on the list of things that had to be done. "If you gotta have an attendant, and you don't have one, you're fucked. That's the ultimate reality of being disabled."

In our next issue: LaSpina and Robert talk about pride and identity.

Quadriplegics, the deaf, those afflicted with cerebral palsy and many others to whom sympathy would once routinely have been extended are now increasingly likely to hurlkind words back in your face and demand respect for their "disability culture" instead. And don't talk to them about a "cure", for that is a dirty, four-letter word.

Bill Stothers ... says, "When you ask people, 'If you could take a pill and not be disabled any more, would you?' they say they wouldn't if it meant losing the experience and the memory of their life as it is now." . . .

Although it sounds bizarre, the search for a cure is regarded among the disabled as a distraction from the more important process of acceptance and assimilation. ...

America's balkanisation into demanding minorities leaves little room for the old virtues of compassion and tenderness. . . . It is uncompromising, bitter stuff.

Hugo Gurdon, London Daily Telegraph
June 21, 1997

London Daily Telegraph reporter Hugo Gurdon, searching for disability Internet sites as a result of the New York Times article by Douglas Martin found Mainstream magazine's website (www.mainstream-mag.com). Gurdon called Mainstream editor Bill Stothers, wanting to interview him about "if I could take a pill and not be disabled, would I take it?"

"I tried to broaden the topic -- I tried to talk about how people have life experiences with a disability that are valuable in and of themselves, and people don't want to lose those," Stothers said. "I told him that I'd have to think about it; that if it meant denying my other life before I was cured, then I wouldn't want the pill" because that disabled life, he said, was his life. "And I'm happy with it."

Such propositions weren't new to Stothers. "It's kind of a devil's bargain," he said. " I wouldn't take it."

Stothers says he tried to broaden the discussion with the reporter, to "explain that having a disability was not a fate worse than death. That people aren't sitting around just waiting for a cure. That people can live really rich lives and all.

"The more I talked that line, the more I could tell his interest was just petering out."

Stothers has been in the news business himself most of his life. He thinks he knows what's going on: "The reporter gets an idea of what he thinks is a nifty idea. When the story veers off from that, the reporter loses interest. "They can't understand what we're saying.

"Reporters think that anyone who has a disability has to therefore be courageous." It's because that's what they believe they themselves would feel if they became disabled, said Stothers. They figure they'd need courage to go on -- so, obviously, anyone who has a disability must therefore have courage.

Stothers says he tries to explain: "But what's your choice?" he tells them. "You die or you live. So we live. We demonstrate that people are infinitely adaptable."

But a reporter simply ejects -- disregards -- those remarks. because they don't fit anywhere" with the story the reporter has planned to write.

Disability rights is still understood in society through a nondisabled sensibility. A person reading a newspaper, for example, watching a John Hockenberry report on TV -- might hear something about gimp culture, but it doesn't make any sense to them. It's so new that they've never heard of it before. It doesn't fit their reality, so they simply disregard it.

It has often been suggested that the reason reporters don't "get" disability rights is because there aren't more folks with disabilities in the newsroom. But Stothers has another thought about that. Actually, he says, there are a number of reporters who have disabilities in newsrooms. But they don't identify as disabled. They stay away from disability topics, and they don't talk about the issues.

"It's not a glass ceiling, or a chrome ceiling," says Stothers. "It's a cocoon."

Getting our vision out:
What they hear

Anti-disability rights news reports on shows like Frontline and 60 Minutes crop up with frustrating regularity -- with little input from our side.

One reason may be that groups have been funded specifically to air anti-rights views in the media, says a study from the National Committee on Responsive Philanthropy.

Politically conservative foundations have funded "sophisticated and effective media outreach strategies" over the last decade "designed to influence public debate on many social issues," says a recent report from the National Council on Responsive Philanthropy. Moving a Public Policy Agenda: the Strategic Philanthropy of Conservative Foundations reports on the NCRP's study of 12 conservative foundations, including the Bradley, Scaife and Olin foundations. "These 12 foundations controlled assets of $1.1 billion and awarded $300 million in grants" during the study period. "While the size of their grantmaking programs may pale in comparison to some of the nation's largest foundations, conservative funders have unmatched success in advocating for their right-wing political agenda," said NCRP.

Instead of funding modest, local initiatives as liberal foundations do, says the report, "conservative funders see themselves as part of a larger movement to defeat 'big government liberalism' and fund accordingly." So when conservative foundations award grants, their dollars are often earmarked to do media "education and outreach."

"For example, the [conservative] Citizens for a Sound Economy . . . in 1995 alone conducted 50 different advertising campaigns, appeared on 175 radio and television news shows, placed 235 op-ed articles and received coverage in more than 4,000 news articles," said the report.

That's a level of "education and outreach" that no disability group -- ever -- has even begun to match.

Disability advocates always insist that the average American isn't against access. But the average American's voice isn't being heard, isn't influencing the media, says this report. Instead, policy institutes and think tanks backed by conservative foundation dollars create a "version of American politics in which policy ideas backed by enough money inevitably find their niche in the political arena -- regardless of citizen viewpoints."

Besides offering an explanation for media attention to the backlash against rights, the report offers lessons in how grantmakers influence policy trends. Copies of the 52-page report are available for $25 from NCRP ($12.50 for NCRP members.) For information write to NCRP, 2001 S. St., NW, Suite 620, Washington, DC 20009 (202/387-9177; fax: 202/332-5084).


"Disabilities Law Protects Bad Doctors."

You didn't even have to read the op-ed in Nov. 28's New York Times to know Walter Olson's take on the Americans with Disabilities Act. Anesthesiologist Frank Ruhl Peterson was "stealing narcotics to feed his own habit" and continuing to perform surgeries, thanks to the stupid ADA; in fact, such behavior is never protected under the ADA. Olson is with the right-wing Manhattan Institute.


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