June 30, 2003

To: Karen Orloff Kaplan, President and CEO, Partnership for Caring
Victoria D. Weisfeld, Program Officer, Robert Wood Johnson Foundation

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 obvious that 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.

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 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)

This list will be updated as many others have requested that their organizations name be added in support. To add your organizations support please follow our link.

CC: Risa Lavizzo-Mourey, President and CEO, Robert Wood Johnson Foundation Rosalynn Carter, Honorary Chair, Last Acts