Lobbyists for state institutions said,

"The safety and constant monitoring provided by an institution presents one care option envisioned by the ADA."
-- from one of many amicus briefs in support of Olmstead in Olmstead v. L.C. and E.W. 

The Olmstead petition argued that the federal government cannot require states to offer disability services in the most integrated setting. Olmstead lost that suit.

Winning it meant, for all but a few of us, that law-abiding disabled Americans have the civil right to live in freedom with home- and community-based supports -- if states will obey the law. Today 1.9 million of us are imprisoned by states in long-term "care" facilities for the crime of having a disability. Millions more of us live under threat of losing our liberty -- for our own good.

We could consider the Olmstead decision a happy ending. But states will not obey that ruling willingly. We have not yet won our freedom.


Mouth believes

Safety is Dangerous

clipping from the New York Times showing the headline, Abuses at Nursing Homes Go Unabated, Audit Says


The two articles below appeared in Mouth magazine #53, May 1999.




"Surveys conducted in the nation's 17,000-plus nursing homes in recent years showed that each year, more than one-fourth of the homes had deficiencies that caused actual harm to residents or placed them at risk of death or serious injury."

-- General Accounting Office, "Nursing Homes," March 1999




Young people with quadriplegia (paralysis in four limbs) will live 15 months, on average, in congregate settings. When living in their own homes, with support, they will live for 20 years or longer.

-- World Institute on Disability



"Those of us who require assistance with our personal daily needs are expected to give up control over our lives in exchange.

"Large numbers of Americans, as we age, will need assistance with things like dressing, bathing, using the bathroom. Why do we continue to accept that nursing homes must be endured as a solution?"

-- Mary Johnson, editor,
The Ragged Edge



"Now there's seventy crips in seventy rooms, all locked up for writing songs about freedom..."

-- Ian Stanton in "The Incredible Shrinking Man"

A Learning Experience
by Nancy Weiss

In an attempt to control the behavior of a 14-year-old boy who was diagnosed with autism and mental retardation, a teacher at Fairview Developmental Center in Huntington Beach, California, killed him by rolling him inside an exercise mat.
She was arrested. Testimony shows she had tied a diaper across the boy's face to block his vision before rolling him in the mat. Then she sat on the mat, holding the student in place until he stopped kicking. When she unrolled the mat, the student did not get up. He appeared limp. He died after being transported to a hospital.
The teacher's attorney argued that some might consider the teacher's behavior improper, but that "a classroom full of autistics is a different world."

"Those people," he said, "are socially undesirable.... What teachers have to do may seem strange and distasteful." Even so, he said, it was necessary.

The judge dismissed charges against the teacher, saying there was no doubt she had caused the boy's death but that her actions were "between her and her conscience and not something for a court of law."

clipping of the front page of the Hartford Courant showing the headline "Deadly Restraint"

The Hartford Courant noted that the California story is not unusual because the teacher went unpunished. What was unusual was her arrest. In the majority of cases, staff involved were not arrested. In many cases not even an internal investigation was held.
A medical examiner, asked to comment on another case, said that he could not yet give a cause of death because the case was still under investigation. "I can tell you this, though," he said. "This was a problem kid."
The most vulnerable people with the most severe disabilities are the most likely to be placed in "homes" where they can be controlled. The more they dislike this control, the more likely they are to protest. The more demonstrative their protest, the more their behavior will be viewed as evidence for continued institutionalization. And the less likely that their protests will be heard.
The full series of articles from The Hartford Courant is available on the web at www.courant.com. But just as the names on the Vietnam Memorial only hint at the suffering endured, these names, dates, and one-line explanations tell as little:

A person killed because he refused to go to the library, another because he ran across a play yard, another when he was not allowed to use the bathroom, another because she wouldn't go to a day program.

All were living in their "homes."


"Standards remain lax and reforms fall short because of the very nature of nursing homes. Facilities that care for nearly 2 million elderly and disabled residents form a lucrative private industry that profits directly from pain -- while taxpayers foot the bill.

"Nursing homes ring up $87 billion of business each year, and more than 75 cents of every dollar comes from public funds.

"With the number of elderly Americans requiring long-term care projected to reach 14 million by the year 2020, the [nursing home] industry is virtually guaranteed a profitable future.

-- The Nation
March 29, 1999


photograph of a group of perhaps 80 women being taken on an outing from a large institution.


"The industry gives millions in contributions to state and federal officials, insuring weak public oversight....

"... the industry knows how to use its political and financial clout to block any meaningful reform."

-- The Nation
March 29, 1999
When Safety is Dangerous
illustration of a man bound and gagged, in restraints.

by Lucy Gwin

When you herd those people into one place and keep them segregated, they become, in isolation, more vulnerable and less capable of defending themselves. Both history and today's headlines prove as much.
Even so, banishing the imperfect is often done in the name of their safety. The practice is known in the disability industry as "serving consumers in a congregate setting."

Predators, the true consumers at this fish-in-a-barrel feeding ground, will come. No amount of policing will drive them away or put a halt to their perfectly natural activity.
No, not all employees in congregate settings are predators. Do-gooders are as likely to flock to nursing homes, state and county hospitals, and developmental centers. They mean well, but you probably wouldn't want them doing their variety of good at your house, making the rules you must live by, judging your behavior, insisting upon your compliance with a regimen they impose. Seen below, a photo of exactly that process:

photo of an institution do-gooder watching and noting the results on a clipboard as an inmate combs her hair

The majority of workers in congregate settings are simply overworked, poorly-paid, average Americans. Please note, however, that their status in the workplace and the world derives from the fact that they are not those people.

We are those people and we'd rather go to jail than live anywhere but at home.

Nancy Weiss is Executive Director of TASH, a national disability rights organization whose members assisted the Hartford Courant in its investigation of deaths in certain congregate settings. She can be reached at info@ tash.org.

The illustration of the man in restraints is by B. Faw and first appeared in Mouth magazine in 1991.

Lucy Gwin is editor of Mouth magazine. She escaped from a nursing home where she was serving a life sentence for the crime of getting hit by a drunk driver. You can email her by clicking here.

But won't it cost too much money to let those people run around loose?

Maybe you have a different worry altogether. Like, What if people with some disabilities are dangerous TO the community. Check that out with Don Weitz, who did his homework.



Take a quick comic look at safety.

Today, some genuine American patriots are at work, changing the system that wrongfully imprisons so many. They call themselves Freedom Clearinghouse, and you can learn more about them right now.