Inside a cocoon
"It's a cocoon," Mainstream magazine editor Bill Stothers told us. We were discussing the problem with getting our message -- the disability movement message -- to the masses. As usual, conversation turned to the role of reporters in the nation's mass media. Stothers' metaphor seemed apt: that disabled activists, and their message, seem to be in a cocoon -- nothing they say gets out.
"How many times can we say, request, insist, proclaim, scream that we do not want pity; that we do not like the paternalistic attitudes of others, that we are disabled people whose physical disabilities do not make us lesser people; that we are neither heroes or villains; that we are alive because we want to be, not because we are simply using life as a waiting room for an appointment with death? How many times before even a fragment of hat we know to be true is understood by society as something more than nonsense?"
Those words could have been written to fit with our theme in this issue. In fact, they were written by Edward Hooper, in The Disability Rag 13 years ago. (They're in our Ragged Edge anthology; contact us for ordering information.)
The more things change, the more things -- some things, anyway -- seem to stay the same. Getting the word out about our issues -- the real ones that concern the movement, not the made-up ones of "heroism" and "courage" and "overcoming" -- seems as difficult as it ever did.
In this issue we talk with Nadina LaSpina, Daniel Robert and Stothers about these things. LaSpina, a professor, teaches a course on disability culture at the New School for Social Research in New York City; Robert is a disability activist in New York.
Robert asks: How can activists spend time calling reporters, buttonholing editors, getting our issues into the news, when so much of your time is spent doing things like trying to find a decent attendant who will even show up for work? And without an attendant you lie on your back all day, or end up in a nursing home, he says.
Ironically (or tragically, maybe) we can't seem to get the word out about the bills in Congress that will set up national attendant programs. Reporters seem to hear from every group but us. It's not that we're not out there talking about the issues. It seems it's just Stothers' cocoon. Our story starting on page 22 looks at how the central issue continues to be missed by the media. Respondents to our attendant services survey from last time say, almost unanimously, that what they most need and can't get in attendant services is a little control over what happens. But "consumer control" -- which everybody wants -- hasn't made it onto the public agenda yet.
Speaking of missing the obvious: As we covered the emotional fallout from the Robert Latimer trial, we kept seeing something between the lines that didn't seem to make too much sense.
Paul Standway, writing in the Edmonton Sun about murder victim Tracy Latimer, reported that, "at age four the victim of cerebral palsy had the muscles and tendons in her hips cut to ease twisting in her joints. The procedure was repeated five years later and she spent six months in a cast from chest to toes. Eighteen months on, surgeons inserted steel rods in Tracy's back in an attempt to straighten her body. Then her right hip began dislocating regularly. The answer, according to her doctors, was more radical surgery. More pain. It was to keep her from going through his pain that Latimer says he killed her."
Doesn't it seem that Robert Latimer really killed his daughter to spare her from not the pain of cerebral palsy but the pain of "medical intervention"? But who's said anything about this? If disabled people have, their voices haven't been reported.
The voices the mainstream press seems to hear are the anti-rights crowd. Josie Byzek reports on voices of those who would destroy community living. Pro-institution forces are again at work; this time in California. Byzek's story is a cautionary tale of what might happen across the U.S.
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