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FOR IMMEDIATE RELEASE
For Information Contact:
Stephen Drake - sndrake@aol.com
(708)209-1500
Chicago, IL - Today, a consortium of nine national disability groups joined forces and sent a letter to two organizations that promote "end of life" advocacy. The letter of concern was sent to the coalition titled "Last Acts." In addition to the key disability groups, the Public Interest Law Center of Philadephia Disability Rights Project joined the effort, along with a university-based public policy institute and five entities concerned with media portrayals of disability.
The consortium charges that disability issues are wrongfully and misleadingly being characterized as "end of life" issues by Robert Wood Johnson Foundation and Partnership for Caring, the funders of "Last Acts."
In the letter, they point to the latest project of Last Acts, a website titled "Last Chapters." The website is described as an online "support group" for those concerned with caregiving, grieving and dying. One section of the site is labeled "Living with Dying." On this page, the personal stories of 11 individuals are presented. Among the stories of those who are "dying" are the stories of Michael J. Fox, who has Parkinson's, and another individual who has Crohn's Disease.
Obviously, neither Parkinson's nor Crohn's are terminal conditions, but Last Acts is misleading the public and is wrongly perpetuating the dangerous myth that life with a disability is the beginning of a death sentence.
Laura Glozier's reaction to the site is typical of those in the disability community of 56 million nationwide. Glozier, an activist with ADAPT, one of the organizations issuing this letter, was diagnosed with Crohn's Disease 18 years ago, said "I have Crohn's Disease and have suffered through excruciating pain. But I never thought of myself as dying from this chronic condition. I've always been more afraid of dying in a car accident than dying from my particular chronic condition."
Stephen Drake, Research Analyst for Not Dead Yet, has had concerns about Last Acts, Partnership for Caring, and other well-intentioned, heavily-funded "end of life" advocacy groups for a long time. "Initially, the focus of these groups was on making services better for people in the last stages of an terminal illness. Over the last couple of years, though, there's been an alarming broadening of their agenda. For example, we've seen proposals to extend the definition of 'terminal' to include people with incurable disabilities and chronic conditions whose future lifespan can be measured in years. We've also witnessed a drive to change probate codes and health statutes in various states to make it easier to deny, withdraw, or withhold treatment from people with nonterminal cognitive disabilities."
Diane Coleman, President of Not Dead Yet, wants to level the playing field. "Every year, the Robert Wood Johnson Foundation and other funders throw tens of millions of dollars at 'end of life' advocacy. Large grants are fuelling this movement that, increasingly, says people with significant disabilities and chronic conditions are 'terminal.' That means they are influencing disability-related public policy without including disability advocates in the process. It's unrealistic to think that we can counteract that kind of overwhelming public relations machinery without significant resources. Frankly, our lives are at stake. That's the crux of what we want to discuss with these organizations."
A copy of the letter to the Robert Wood Johnson Foundation, Partnership for Caring, and Last Acts is attached. For background information, please visit our website at: http://www.notdeadyet.org. Not Dead Yet is a national disability rights group that is the disability community's definitive source on the implications of public policy and media activity related to euthanasia and assisted suicide. The list of disability organizations involved in this current effort includes:
American Association of People with Disabilities
ADA Watch/National Coalition for Disability Rights
ADAPT
Center on Disability and Health
Center for Self-Determination
Disability Rights Education & Defense Fund
National Disabled Students Union
National Organization on Disability
National Spinal Cord Injury Association
TASH
LETTER ATTACHMENT
June 30, 2003
Karen Orloff Kaplan
President and CEO
Partnership for Caring
1620 Eye Street, N.W., Suite 202
Washington, D.C. 20006-4017
Victoria D. Weisfeld
Program Officer
Robert Wood Johnson Foundation
P.O.Box 2316
College Road East and Route 1
Princeton, NJ 08543
Dear Ms.Kaplan and Ms.Weisfeld:
We are writing to express our deepest concerns over the latest project launched by the Robert Wood Johnson Foundation (RWJF), Last Acts, and Partnership for Caring.
On June 4, your Last Acts website announced the new Last Chapters website about "dying, or living with someone who is dying." The website also includes "life-threatening" or "chronic" illnesses.
Our concerns center on the way in which serious disability, chronic health conditions and the dying process have been thoroughly conflated on this site. Examples of this are evident in the section of the site entitled "Living with Dying."
The introduction to the page reads, in part, "How to live with our own dying, and how to live with the dying process of our loved ones is what these stories are about. The courage, the stamina, and in some cases, pure bravado of living with the dying process make admirable reading."
The stories on the page tell a somewhat different - and disturbing - story. 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;
- Jamie Velasquez, who has severe rheumatoid arthritis.
There is a problem with labeling these people as "dying." 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. Too many of us have heard a non-disabled person say they would rather be dead than be like us. The Last Chapters site reinforces these archaic stereotypes.
This is not the first time Last Acts and other "end of life" advocates have broadened their agenda to include people with disabilities in a way that concerns us, but it is arguably the most blatant from a public relations standpoint.
Attempts to come to an agreement over problems with the site have failed. A representative of Not Dead Yet talked with both Mr. Eakes and Mr. Lukas. While the conversations were cordial, it was obviousthat no changes would be forthcoming as a result. Therefore, we see no other recourse but this public expression of our concern, and a request for meaningful follow up and dialogue.
We urge a meeting with representatives of Last Acts, RWJF, concerned national disability organizations, and key individuals to discuss this and related aspects of current "end of life" advocacy and the potentially negative consequences for people with disabilities. If this trend continues, the well-funded "end of life" movement threatens to become a steamroller trampling our own efforts to promote balanced and positive images of disability and establish policies that support our lifestyles.
Thank you for your attention to this letter of concern. Please direct responses to Diane Coleman, President, Not Dead Yet.
Sincerely,
Diane Coleman, J.D., President
Stephen Drake, Research Analyst
Not Dead Yet
Andy Imparato
President, American Association of People with Disabilities
Jim Ward
President, ADA Watch/National Coalition for Disability Rights
Bob Kafka
ADAPT
Bob Griss
Director, Center on Disability and Health
Tom Nerney
Director, Center for Self-Determination
Steve Taylor
Director, Center on Human Policy at Syracuse University
Marilyn Golden
Policy Analyst, Disability Rights Education & Defense Fund
Joe Hall
Responsibility Coordinator, National Disabled Students Union
Alan A. Reich
President, National Organization on Disability
Marcie Roth
Director, National Spinal Cord Injury Association
Judith Gran
Public Interest Law Center of Philadelphia Disability Rights Project
Nancy Weiss
Director, TASH
Janine Bertram Kemp
Cedar Media
Lucy Gwin
Freedom Clearinghouse /Freehand Press/Mouth Magazine
Tari Susan Hartman
President, EIN SOF Communications
Mary Johnson
Editor, Ragged Edge Magazine
Cynthia Jones & William Stothers
Exploding Myths, Inc.
Marca Bristo
(former Chair, National Council on Disability)
CC: Risa Lavizzo-Mourey, President and CEO, Robert Wood Johnson Foundation
Rosalynn Carter, Honorary Chair, Last Acts
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