Where are the crips in the discussion?

EDITORIAL By Mary Johnson


Over the past few years, the issue of "caregiving" has become, if not a hot topic in the media, at least lukewarm. The need for attendant services is a national crisis, but it remains an unreported one. The story, when we get one, is about the "plight of the caregiver." It's a topic you see more and more in letters to the editor, in columnists' musings, in opinion articles.

Read our feature story, The 'Care' Juggernaut.
A lot of the "awareness" being generated by these writings is the fruit of efforts of the "family caregiver" groups that have emerged over the past few years, many funded by one or another aspect of the medical-pharmaceutical complex.

Yet in all the talk, the people getting the "care" are almost never mentioned. Even less often (meaning virtually never) are they a participant in the discussion.

Crips seem to be nowhere in the public discussion. either. It seems that the concept of what the disability rights movement has called "attendant services" or "personal assistance" has gained little recognition anywhere

Why should this be, I wondered, given that we'd had nearly three decades now of the independent living movement talking about it, of ADAPT pushing for more public funding for it? Shouldn't we be hearing more from the crips, rather than less?

Our feature story, The 'Care' Juggernaut, is only part of what I have been finding out as I pursue this issue; it would take a book to lay out the entire discussion. And it's a discussion that for me has only begun.

Public focus has lately moved to the "poor caregiver."

Yet despite the convictions of the talky "caregivers" that it is they who are suffering, the reality is that it is the crips who need the support. If they were getting that support, if they were getting services the way the movement has envisioned them, the "caregivers" would be our employees, not the ones attempting to shape the debate.

Toward the end of the interview I was having with Woody Osburn, head of Ohio's Statewide Independent Living Council, I asked whether it seemed to him that the concepts espoused by the independent living movement were fairly unknown outside that movement. Yes, he said without hesitation.

"There's too much of the system listening to the "caregiver" and not the "consumer," he explained.

Diane Coleman, an independent living center director, said that in the independent living movement we seemed to talk mostly to each other.

Was it a matter of funding? Did the movement lack the resources of the "caregiver" groups to influence the public debate?

Every one of the people I have ever talked to who has been a "consumer of personal assistance services, whether the services come from a paid worker or a family member, has sooner or later brought up the deeper stuff; yet I've come to wonder if whether it isn't the "deeper stuff" that keeps us from being heard, even when we do try to enter the public discussion.

"I think society is starting to recognize the issue of elder abuse," Susan Golden told me," but people don't admit yet that it happens to us at home. They admit it happens in nursing homes -- the big thrust is to get people out of nursing homes and into their own homes -- but we don't talk about the abuse in family settings."

And "there hasn't been a concerted effort on the part of the disability rights movement" to take it on, Osburn said.

The next logical question was, why not, if it's such a central issue? "It's such a complex social problem," said Osburn.

"A lot of us myself included, were in that situation at one time or another in our own homes. It has a lot of ugly memories, with parents, brothers, sisters.

"And we don't ever want to revisit that."

Mary Johnson is editor of Ragged Edge magazine.

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