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Greetings:
I pas sthis forward for your consideration. Please read and as individuals or as NDP or other organizations you think this would be good to sign; let's give it serious thought. I personally and professionally as an individual, shudder to consider disabilities the door to death. (As I recall it Paul's submitted Constitutional Amendment rang out for Life! )
Of course there are other ways to read these materials; and we can discuss this all here, thankfully.
Sending Best wishes, L.
for reference only: [L. D. Misek-Falkoff, Ph.D., J.D., U.N. Disability Convention Rep. of Communication and Coordination Committee for the U.N. (CCC/U.N.) NGO , and U.N. Rep - Information Habitat NGO. Speaker of the National Disability Party and Chronic Pain Caucus Chair, Staff, the Disability Grapevine Online Daily Newspaper. Moderator Internet disability/law discussion groups. Member - AARP AAUW ACLU American Pain Society, Trigeminal Neuralgia Association, UN. NGO Committees on the Status of Women, NGO Committee on Mental Health, other Human Rights Working Groups; currently joining Committee on Aging, Also forming: a-world.info: affiliates - womens online rights legal doorway.
----- Original Message -----
From: sndrake@...
To: Sndrake@...
Sent: Wednesday, July 09, 2003 4:56 PM
Subject: [Bioethics] ALERT: 2nd Chance to Sign "Letter of Concern" re: Last Acts
As some of you know, NDY issued a press release and letter
on June 30th expressing concern over some disturbing
"end of life" advocacy launched by Last Acts, Partnership for
Caring, and funded by the Robert Wood Johnson Foundation.
The letter, endorsed by no less than nine national disability
organizations, was faxed and snail mailed to Partnership for
Caring (PFC) and the Robert Wood Johnson Foundation
(RWJF) via overnight mail on June 30th.
As of today, July 9, 2003, we have heard nothing from any
representative of RWJF, Last Acts or PFC. It's obvious that
they hope this will all go away.
In the meantime, several new disability organizations have
asked to be added as endorsers of the letter of concern.
Given the current stonewalling, we've decided to work toward
a follow up press release during the week before the
anniversary of the ADA, announcing growing disability
community support.
If you wish to have your organization listed as an endorser of
the letter below, please email ndycoleman@.... Include:
The organizational name, address, and a specific organizational
representative.
The deadline for notifying us is Friday, July 18, 2003.
Diane Coleman, President
Stephen Drake, Research Analyst
Not Dead Yet
LETTER ATTACHMENT
First sent 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 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.
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
Community email addresses:gwolbrin@...
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