'Please don't put me in a nursing home'.
The ad reading 'please don't put me in a nursing home' -- which ran in the print edition of Ragged Edge magazine and is available online for downloading -- was designed by Lucy Gwin of Mouth magazine, who in her other life was an advertising copywriter. It is available free to anyone who'd like to put it in a local newspaper. It can be downloaded at www.freedomclearinghouse.org
Freedom Clearinghouse is the joint project of Ragged Edge and Mouth magazines. Our purpose is simple: to give advocates the tools and connections they need, online, to make the Olmstead U. S. Supreme Court decision's promise a reality in all 50 states.
Last June, the Court ruled that the Americans with Disabilities Act's "integration mandate" required that states provide services to people in the "least restrictive environment." In January, Donna Shalala, head of the U. S. Dept. of Health and Human Services, sent a letter to all 50 governors telling them they'd better get cracking on enforcing the Olmstead decision (see story in D. R. Nation). "No person should have to live in a nursing home," she said.
The HHS Office of Civil Rights has said it will look into any case of someone being kept in a nursing home when they could be living in their own home, their own community. It has a complaint for you can use for people kept in institutions and nursing homes against their will. That form's available to print out at www.freedomclearinghouse.org.
People from all but a few states and territories have joined the Freedom Clearinghouse effort, and we hope to have folks from Maine, Nebraska, Puerto Rico, South Carolina and South Dakota signed up soon. See the long list of them, state by state at the website.
Freedomclearinghouse.org is also an online source of all kinds of studies and data supporting "home and community-based services," as the jargon says. We have graphs from the Office of Management and Budget, we have tables listing Medicaid waivers, by state. We have facts, figures, and testimony from state Medicaid directors to counter the argument that "if we set up a program that people want, folks will come out of the woodwork and we'll be overwhelmed!" That's called the "woodwork" argument, and it's used to argue against putting money into in-home services; used to keep dollars flowing to nursing homes, just like always. We also have studies you can quote when you're told hiring an attendant isn't "safe."
Visit us at www.freedomclearinghouse.org -- don't forget.
Can't we have it both ways?
Advocates around the country are scurrying to get their states to implement the Olmstead decision. In late January, others were racing to prepare a friend-of-the-court brief for two cases that were before the Court when the March/April print edition of Ragged Edge magazine went to press. Those cases challenge the constitutionality of the Americans with Disabilities Act itself -- its Title II, pertaining to state and local governments.
The Olmstead victory will be short-lived if the court declares the entire Title II unconstitutional. Olmstead was a Title II case. After Ragged Edge had gone to press, both cases were settled -- a highly unusual action.
Disability activists believe the Supreme Court will take another ADA case next term to resolve the issue of the ADA's constitutionality.
Two schools of thought wind through the tortuous history of disability rights ideology. One holds that disabled people are a specific group of people with a distinct culture and past -- a "discrete and insular minority," akin to racial minorities. The other school says that disability is an ordinary condition of all people, something any of us can slip into and out of, depending on circumstances. When we are disabled, goes this second line of reasoning, we are subject to the same invidious bigotry faced by those people who have, for example, been locked away in institutions for drooling, twitching and speech that sounds unrecognizable to others. This school says that people with heart conditions, even if that heart condition is controlled, if it is the reason for of an employer's discrimination, should have the right to themselves of the ADA's legal protections.
Hewing to the first line of thinking, Supreme Court Justice Ruth Bader Ginsburg, in her Sutton decision last year, said that these were not "real" disabled people.
An editorial in last April 26's Los Angeles Times put it this way: "A part of the nation's civil rights legislation, the ADA was conceived as a weapon against prejudice and discrimination. It was not designed to create remedies for aggrieved employees or allow every form of common impairment to be treated as a protected disability. Going beyond the legislation's goal would serve nobody."
Washington Post Supreme Court reporter Joan Biskupic, whether intentionally or not, mimicked the states' anti-ADA argument when she wrote on January 12 that "the justices have accorded age and disability a lesser degree of constitutional protection than race and sex bias claims." Of course, as the above shows, that was not true of last summer's Title I rulings, in which the Court ruled that the ADA was indeed meant to protect that " discrete and singular minority" known as "people with disabilities" -- just not the rest of us.
It seems we can't have it both ways. If the ADA is to avoid being gutted this time around, it will be because Justice Ginsburg's interpretation of last year prevails. But that will mean the ADA is being shaped as a law for the few, the different, the "handicapped." And that it won't protect the rest of us at all.
Getting beyond 'one lawsuit at a time'
What will we do after the dust from the lawsuits settles?" asks Josie Byzek, instigator of the Midtown Sweep (cover story, Jan./Feb.)
In our current issue, we report on the continuation of the Sweep in Pennsylvania, as activists take on businesses one by one to force compliance with the ADA's access requirements for public accommodations.
"Systemic change toward access to our communities is very hard," she says. "A civil rights law is not a building code, but the two must be reconciled if we are ever to get beyond making our communities accessible one business at a time.
"We're meeting with small business, historic society, city and state code representatives to put together some kind of boiler-plate access guides that hopefully will really work," says Byzek. "I think we're on the right track in saying that we want Mom-and-Pop businesses to let us in."
But Byzek is worried. "I've seen other great initiatives die when the 'meetings' stage started," she said.
One reason the Midtown Merchants Assn. has been willing to work with Byzek's group, she says, "is directly due to the lawsuits.
"We have a gun; it's called a lawsuit. We've proven we will pull the trigger. And Assn. President Joe DiCaprio has said publicly that now he understands why we did what we did."
But lawsuits aren't enough, she continues. While new construction must be accessible, by law and by building permit, "that doesn't touch the restaurant that closes and reopens as a different restaurant."
"If we had 'triggers' in building permits -- something that at the very minimum informs business owners that they have civil rights obligations in addition to code requirements -- we'd get more access," she says.
All the groups at the table agree to this, says Byzek; but "the code enforcers say they cannot legally promote an access change that is in conflict with another code."
"Here's an example: I apply to the city to install a uni-sex bathroom because my business is too small for to make both a men's and a women's room accessible. But the city turns down my request, because the building code says a business must have both a men's and women's room."
"Right now, we have the state putting together a list of places where the ADA comes into conflict with building codes," she said.
"We're going to figure this out. I don't know what it looks like yet, but we'll get there."
When they do, we'll report it in Ragged Edge.
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