Disability Rights Advocate, Diane Coleman, Founder, Not Dead Yet
[From article]
Doctors told her she would have six months to a year before it grew back, requiring more risky followups.
But 13 years later, Phillips is 38 years old and thriving, despite two very severe medical conditions. She also suffers from lupus. The state of her health has made her somewhat philosophical about her own mortality.
“There’s a certain freedom that comes with dying,” said Phillips, who lives near New Orleans. “You really don’t have to deal with your annoying cousin. You really don’t have to go on that family trip. You can eat ice cream for breakfast.”
Her prognosis was not unlike Brittany Maynard’s. But Maynard chose physician-assisted suicide after doctors diagnosed her with terminal brain cancer on Jan. 1, 2014. Before she died less than a year later – on Nov. 1, 2014 – at age 29, Maynard had become a prominent advocate for the “death with dignity” movement, which has triggered legislation in 25 states.
[. . .]
But as citizens from California to Kentucky push for dying rights, advocacy groups for people with disabilities question whether physician-assisted suicide should be legal.
“The risk of mistake and coercion and abuse are really too great,” said Diane Coleman, founder and CEO of Not Dead Yet, an advocacy group that informs and lobbies on behalf of the disabled.
[. . .]
Phillips said the laws discourage people from finding comfort in their condition. Thoughstudies of some patients show that physicians generally offer more optimistic predictions about how long a terminal patient will live, she’s still alive long past expectations.
“I’m able to surround myself with people like me,” said Phillips, who worries that many terminal patients do not know about support groups and advanced palliative care. “These aren’t things that people are told exist. Doctors often don’t know. They value my life as it is.”
[. . .]
Coleman established Not Dead Yet in 1996 to counter the efforts of Dr. Jack Kevorkian, dubbed “Dr. Death” for his active support of a terminally ill patient’s right to die.
Not Dead Yet partners with groups like the Disability Rights, Education and Defense Fundand the Massachusetts activist group Second Thoughts to create a nationwide network that opposes the death with dignity movement and the laws it champions as discriminatory and dangerous.
The laws generally stipulate that only a capable adult with a terminal illness, meaning one that will lead to death within six months of diagnosis, may receive a life-ending prescription. The patient must make both a written and oral request in the presence of two witnesses. Another oral request must follow at least 15 days later.
But where the safeguards stop, the danger begins, according to the disability groups. None of the laws or rulings include provisions about when, where or how patients should ingest the life-ending medicine once prescribed.
[. . .]
Most advocacy groups cite unendurable pain as the main motivation for pursuing legislation.
To Not Dead Yet and the Disability Rights, Education and Defense Fund, this amounts to fear of disability rather than fear of painful death or lessened quality of life.
The laws have a provision that bars physicians from prescribing a life-ending prescription to a person with disabilities simply because they are disabled. But opponents stipulate that the danger does not come from those with disabilities who might feel pressure to end their lives, but those without disabilities who fear becoming disabled or having a poorer quality of life.
Marilyn Golden, a senior policy analyst at the Disability Rights, Education and Defense Fund, who uses a wheelchair as a result of injury, spoke from personal experience about the doubts about her quality of life that she initially encountered.
“At the beginning, I felt that the injury was unbearable,” she said. “A year later, it hit me: There was no change in my quality of life.”
http://www.mcclatchydc.com/news/nation-world/national/article26972707.html
JULY 13, 2015
As assisted suicide laws spread, cancer survivors, disabled object
BY DANIELLE OHL
McClatchy Washington Bureau
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