Mental Health Advocate Wants End on Her Terms
By Mike Reynolds
When Judi Chamberlin was born on October 30th,
1940, no one could have predicted how much she would revolutionize the nature
of mental health care and treatment and the ways in which it would be delivered
in the United States and throughout much of the world. 
Chamberlin, who is currently writing about the last days
of her life in her blog “Life as a Hospice Patient,” has been a
strong voice for decades for the rights of people with mental illness to have
control over their treatment.
She was first hospitalized for depression in 1961, but by
1966, she stopped getting traditional mental health treatment in hospitals.
“After my last hospitalization I felt very angry
(and) upset over the way in which I was treated,” she said in a recent
interview. But it was not until 1971, when she discovered the Mental Patients'
Liberation Project in New York City, that she connected with others who shared
her concerns. “The group was run by this man called 'Howie the Harp'
(Howard Geld), a man who died far too early for his time,” Chamberlin
recalled.
Her basic idea, that people with mental illnesses should
have alternatives to a medical system in which hospitalization is seen as the
only option for people with psychiatric disabilities, has won her praise across
the United States and across the world. “We live in a society where the
drug companies want to 'medicalize' everything,” she said.
Although Chamberlin believes drugs can be an effective
tool, it must be a patient's choice whether to use them, she said. Asked why
mental health care has been noticeably absent from the current health care
debate, she said, “It will be a long time until any elected official will
be advocating for the ability for people with mental illness to refuse
medication.”
A committed activist, she attracted media attention after
she had a letter to the editor published in The Boston Globe in which
she deflected discussion of the controversial health care reform issue of
"death panels" by inviting the media to chronicle her end-of-life situation.
Chamberlin has been diagnosed with fatal chronic obstructive pulmonary disease,
and her blog is featured in the Globe.
Writing about being a hospice patient has been rewarding,
she said, noting that focusing on patients and their wishes is the guiding
principle of the hospice movement. “I may not be able to go give speeches
all over the place, but I can still write,” she said.
Her book, "On Our Own: Patient-Controlled Alternatives to
the Mental Health System," was published in 1978 and is considered a vital text
for the patients rights movement. In addition to the U.S., the book has been
published in Britain and Italy.
Chamberlin has received numerous awards and commendations
for her activism. In 1992, she was honored with the Distinguished Service Award
of the President of the United States by the President's Committee on
Employment of People with Disabilities. She also received the David J. Vail
National Advocacy Award and the 1995 Pike Prize, which honors those who have
given outstanding service to people with disabilities.
Chamberlin has spoken at conferences and meetings
throughout the U.S. and has appeared on many radio and television programs such
as "Oprah," "The Sally Jessy Raphael Show" and "Geraldo," discussing self-help
and patients' rights. Her appearances have include stops in Canada, England,
Scotland, Ireland, Iceland, Sweden, Holland, Portugal, Italy, Australia, New
Zealand and Japan.
Asked about her biggest accomplishments, she pointed to
several, most notably the U.N. Convention on the Rights of People with
Disabilities. “If that was ever enforced, and the United Stated has signed
on to it, it would give all people with disabilities solid legal rights
throughout the world,” she said.
Asked what organizations an individual with psychiatric
disabilities could turn to for support, Chamberlin mentioned the National
Empowerment Center (which can be reached by calling at 1-800-POWER2U) and the
National Mental Health Consumers' Self-Help Clearinghouse in Philadelphia. She
served on the staff of the National Empowerment Center for a number of years.
Mike Reynolds is a freelance writer and short movies
producer.
Judi Chamberlin's Blog Life as a Hospice Patient is
available on the home page of Independent Living-USA. Com or
www.ilusa.com. |
