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Disability groups meet with PFC (Sep. '03)

This is not the first time disability has been misued by such groups.

Last Acts replies to groups

Groups reply to Last Acts' letter


A deliberate decision?
Does end-of-life group shut out disability perspective?

by Mary Johnson

"It was a deliberate decision -- and it was irresponsible."

Dr. Ira Byock, author of Dying Well and one of the founders of Partnership for Caring, is adamant about what he sees as that "end-of-life" organization's failure to seek the input of disability rights groups.

The latest manifestation of that failure is the current flap over the group's LastChapters website.

On June 30, saying that "attempts to come to an agreement over problems with the site have failed," Not Dead Yet, joined by more than a dozen national disability rights groups, wrote to PFC director Karen Orloff Kaplan and PFC's funder, the Robert Wood Johnson foundation.

"Our concerns center on the way in which serious disability, chronic health conditions and the dying process have been thoroughly conflated," they wrote. "Mixed among the more traditional stories of living with an imminently fatal illness are the stories of Michael J. Fox, who has Parkinson's, Jim McNamara, who has Crohn's disease, and Jamie Velasquez, who has severe rheumatoid arthritis.

'The Last Acts folks are well-meaning, well-educated, well-funded progressives who are ignorant about disability rights' -- what NDY's Diane Coleman calls the '4 Ws -- the white, well-off worried well.'

Understanding why terminal illness and long-term disability are different is a real stretch for them.


"There is a problem with labeling these people as 'dying,'" the letter continued. "This message runs completely counter to the longstanding work of the disability community to communicate the realities and potential of living, working, contributing and loving with disabilities and chronic conditions."

The decision to send the letters, says Not Dead Yet Research Analyst Stephen Drake, came only when it seemed an exchange of e-mails and phone conversations between Drake and LastChapters site creator, director Christopher (Kit) Lukas would get no further.

A number of national disability groups signed onto the letter as well.

On June 15, two weeks after the letter had been sent, Kaplan wrote to the groups that "we would welcome participation by all the constituencies who signed the June 30th letter. We are committed to open discussion of our share of different experiences...."

Changes had begun appearing on the LastChapters website that day. The references to Michael J. Fox disappeared, for one thing.

"Mr. Drake's perspective," she wrote, had shown them "that some sections of [the LastChapters website] are subject to differing interpretation and the potential for misconstruction."

In an interview, Kaplan said that her group had "completed a careful review of the Last Chapters website and are in the process of clarifying those areas/statements on the site that are subject to misinterpretation that could have negative impact on the disability groups' important work."

How, said Drake, could they be doing that when they had not yet consulted with any disability groups? If the group were sincere, he said, they would be talking with disability groups to ensure that the changes they were making on their website were the appropriate ones.

Kaplan concedes "that the disability groups feel less than welcome at the Partnership and Last Acts 'table' and thus do not have a forum in which they can raise their issues directly, have them heard in a nonjudgmental manner and addressed to the extent possible." She is offering a meeting, she says, to rectify that.

The issue of leaving out voices that could and should be shaping America's policies around "end of life" issues has bedeviled the group since its founding, said Byock.

The group which is now known as Partnership for Caring has been around 62 years says its website (its first incarnation was the Euthanasia Society of America, says Drake. ) But the PFC version of the group, says Byock, "was intended to be a virtual tent under which people with very diverse views and backgrounds and politics could come together and discuss issues of care through the end of life" -- the aim to "work together to advance shared values, viewpoints and policy initiatives.

"In fact, however, as it evolved, Partnership for Caring became increasingly insular," said Byock, "and I and others kept asking the management and leadership to invite in diverse voices."

Among those Byock wanted invited were people from Not Dead Yet, he said. "But there were others as well: people with whom I and others disagree on the issue of assisted suicide, people who have had problems with hospice care, people with strongly held fundamentalist Christian beliefs -- none of whom are represented on the PFC board or at the committee level, and whose voices would strengthen and advance the mission of the organization."

Byock, a longtime physician "and advocate for better end-of-life care," as he described himself, called PFC as presently constituted "an expression in groupthink." After two years working with the group, he said, he resigned from the board.

What issue could be more directly tied to the struggle over implementing the Supreme Court Olmstead decision than dying at home? Yet the effort by the disability rights movement to get a bill through Congress that would let people get services at home doesn't seem to be on PFC's radar screen.


Byock hopes the controversy "starts a real discussion" between PFC and the disability community, he says. "That's the only responsible outcome. It could lead to a collaboration that is long overdue -- but better late than never."

Not Dead Yet's Diane Coleman says that groups like PFC need but currently lack a disability rights perspective. "A lot of the fears people have at the end of life are disability related -- like incontinence.

And the disability community's perspective -- "that a person's reactions to these things do not need to be driven by shame" -- is desperately needed, she says. But the end-of-life movement, possibly because of its funding sources, she said, "has been overtaken by medical professionals who are pretty out of touch with the things we have to bring to the picture."

What issue could be more directly tied to the struggle over implementing the Supreme Court Olmstead decision, she said, than dying at home? Yet the effort by the disability rights movement to get a bill through Congress that would change the focus of Medicaid money from nursing homes and give people a choice in where they receive services doesn't seem to be on PFC's radar screen. They certainly haven't sought out the expertise of those in the disability rights movement trying to push the bill. "They don't realize that we have any expertise to offer," she added.

"It takes money to change a nation's morality and public policies from the top down: research must be funded, academic chairs established, issue advocates supported, studies commissioned, articles in academic and medical journals underwritten, advertisements paid for, the popular culture influenced in myriad ways," writes Wesley J Smith, in Philanthropy's Brave New World: Will those who give decide who should live? in the Jan./Feb. 2001 issue of Philanthropy magazine.

"Up to a quarter billion dollars has been spent by foundations since 1996 to promote end-of-life programs - and the shaping of public policy and opinion," writes Drake. "The Robert Wood Johnson Foundation alone has invested $148 million 'to improve care at the end of life."

"I think the Last Acts folks are well-meaning, well-educated, well-funded progressives who are ignorant about disability rights," says the American Association of People with Disabilities' Andrew Imparato. Coleman likes to refer to this group as the "4 Ws -- the white, well-off worried well."

"These kinds of groups just don't 'get' the disability rights perspective and are confused and perplexed when we oppose their positions," adds Steve Taylor of The Center on Human Policy at Syracuse University. "They expect, and at times are bolstered by, opposition from so-called 'right to life' groups. [But] they don't expect to receive opposition from progressive disability groups."

Many end-of-life groups, he adds, "genuinely devalue the lives of people with disabilities. They see disability as a fate worth than death. That's not surprising; they're part of our culture -- the same culture that doesn't understand why Christopher Reeve offends many of us.

"Can PFC be educated? I don't know."

"I think if we take the time to educate them, they will improve," Imparato adds. ("After all, we are all in this business trying to make just that happen -- throughout society," adds disability activist Janine Bertram Kemp.) "But it is likely to take some time -- and they are likely to be defensive and arrogant at times."

"The issue of quality of life for people with disabilities is not something either the public nor the end-of-life groups understands," said one national advocate. Understanding "why terminal illness and long-term disability are different is a real stretch for them."

"Not Dead Yet should be right there with them, in the news coverage, and at their funding sources, for counterpoint -- generating awareness that their destructive message and ideology has got to go," said another.

"If you can't change their attitudes, they deserve the heat," Taylor insists. "They need to know that they're going to receive opposition."

"We have to keep our eye on the fact that [the website] is changing, which is what the disability groups want," Kaplan stressed. "And we want that as well. We would welcome the opportunity to sit with representatives of the groups involved and talk through any misleading statements that we either missed or didn't clarify sufficiently."

When such a meeting takes place, says Coleman, they will insist that a representative of the Robert Wood Johnson foundation participate.

"We hope the Foundation will want to participate in this dialogue," she said, "and as we raise issues, that there will be an appreciation of the fact that the disability community needs resources in order to participate effectively and to bring you expertise into the process."

Coleman does hold out hope that such a collaboration, if it occurs, can undo some of the damage that has been done. "Because there is no question that the end-of-life movement overall as it has been framed through the mass media has in fact been harmful to people with disabilities -- the way we are perceived in society," she says. "It has reinforced the idea that people are better off dead than disabled, and this needs to be turned around.

"We hope that Partnership for Caring and Last Acts and the Robert Wood Johnson Foundation will recognize the significance of our perspective and our message, and want to make changes happen."

Read "Changing the words, re-framing the issue", by Stephen Drake.

Mary Johnson is editor of Ragged Edge magazine. She can be reached at editor@raggededgemagazine.com

Posted July 21, 2003

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