Olmstead Anniversary and the "right to die"

Today, June 22, 2007, is the eighth anniversary of the Supreme Court decision in Olmstead v. LC and EW. LC and EW are Lois Curtis and Elaine Wilson, two women in Georgia who had spent most of their lives in institutions because of disabilities, despite it having been determined that they were each capable of living in a much freer environment. For disabled people, the Olmstead decision is comparable to Brown v. Board of Education in the way it has legally declared that segregation is an unacceptable public policy. And Olmstead was only possible because of the ADA.

Elaine Wilson died in 2004. Here, from The Atlanta Journal-Constitution article published at the time of her death:

In 2000, [U.S. District Court] Judge Shoob accepted a settlement that the state would guarantee the women community-based housing, training programs and employment.

At that hearing, Ms. Wilson testified to Judge Shoob: "When I was in the institution, I felt like I was in a little box and there was no way out."

Of the plaintiffs' testimonies, Judge Shoob said: "I was amazed. They were both so articulate. At a party after the hearing, they gave a talk about how it felt to take care of themselves and what a wonderful life they were leading. I went up on the podium and hugged each one of them. I'd never done that before."

Ms. Wilson had been shunted among institutions and shelters from age 15 and subjected to shock treatment and psychotropic drugs "that knocked her out and ruined her kidneys," said her mother, Jackie Edelstein of Atlanta.

"When I first met Elaine in 1999, it was very hard to see someone with a valuable talent," said Harriet Harris of Lithonia, executive director of Circle of Support Inc., which provided Ms. Wilson with caretakers. "She was very angry and defensive, having spent so many years fighting for survival. Like someone who had been wounded over and over, it was very hard to trust anyone."

Once Ms. Wilson was placed with a caretaker and given independence, her life changed dramatically.

"She blossomed," said Legal Aid attorney Sue Jamieson of Atlanta, who took on the case in 1995. "She took an interest in cooking and church and her personal appearance. She wanted to do advocacy for other people so [she] acquired training in presenting workshops and giving speeches.

"She developed a PowerPoint presentation that described her life. When I heard it, I was extremely moved. I had no idea that Elaine had acquired that level of sophistication. She had exploited her natural skills and abilities to a degree I would never have believed possible. It makes you wonder how many other people like Elaine are out there."

In 2004, on the fifth anniversary of Olmstead, activist Zen Garcia noted:

Olmstead v. LC & EW began as a civil rights case for two women who desired life in the community, but it ended up being a case representing the rights of all people, symbolizing to many of us the decades of legal government segregation and civil rights abuse.

We learned that, at the same time states were fining nursing homes for abuse and neglect, they were giving them bonus for keeping the cost per resident down. This caused an outcry from advocates across the nation.

Since incurring my own disability I had noticed a cycle of misrepresentation that condemned people like myself to nursing home placement. At the time, I was involved with the Georgia Department of Medical Assistance's Long Term Care Advisory Board, and I gave speeches at most of the DMA's Public Outreach Forums, declaring on several occasions that "It is not a lack of money that is the central issue when it comes to long term care, but whether states and corporations have the right to profit at the expense of the people."

Michael Gottesman, a Georgetown University Law Center professor, says it costs less money to provide for mentally disabled people in the community than in an institution. "The evidence is overwhelming in that regard," he insists. "It's politics that explains the states' resistance. It's a combination of the employees in these institutions don't want to lose their jobs, the administrators don't want to lose their kingdoms, and there are still lots of folks out in the community who are happy with continuing to lock these people up and keep them out of sight."

And, of course, Georgia is also where, in 1989, quadriplegic Larry McAfee languished in nursing homes and a hospital ICU for so long that he petitioned the courts for the right to die. Mainstream media mostly leapt on the story of a crip who felt he'd be better off dead, but as history professor and disability activist Paul Longmore writes:

He told Joe Shapiro of U.S. News and World Report that the worst thing about his disabillity was that people treated him as though he was "invisible." He told ABC's Nightline: "If you're a citizen or resident of Georgia and you become ventilator-dependent, you'd better be prepared to become an outcast unwanted by the state." His mother said that he was "thrown around like a bag of rotten potatoes that nobody even wants." "You're looked upon as a second-rate citizen," McAfee told Shapiro. "People say, 'You're using my taxes. You don't deserve to be here. You should hurry up and leave.'" "It gets to the point," he said, "where you realize that this is your life, . . . and in my case, it's not worth pursuing."

Yet, while McAfee petition to die was granted, he lives on. Significantly, the granting of his petition stated that permission for McAfee's ventilator to be turned off so that he would die would not be ruled a suicide, but the natural consequences of his paralyzing injuries many years earlier. This is just how deep the "better dead than disabled" idea runs: Allowing McAfee's wish to die through assistance in flipping a switch would've been legally ruled a natural consequence of a car accident.

But it turns out that being freed from the nursing home made McAfee's life worth living again. (Joseph Shapiro's report of McAfee's adventures is well-covered in his book, No Pity, an excellent, concise and readable account of the history of disabled people in the United States.) As for institutionalization and assisted suicide, the general consensus among disabled folks who speak on this is that being treated like a human being does that -- it makes life livable and worthwhile.


Photo description: The picture is by photographer Tom Olin from a recent ADAPT action in Washington, D.C. A black woman wearing a pink t-shirt solemnly holds a bright orange placard that reads "Real People, Real Choice" while dozens of demonstrators are visible behind her.