President Bush Lets Consumer/Survivor Groups Down 

Sharing concerns raised by a number of mental health advocates and advocacy groups across the nation, David decried the proportionate lack of direct consumer/survivor representation on the Commission (only one, Dr. Daniel Fisher of the National Empowerment Center sits on the panel), as well as confirmed plans to appoint Sally Satel to the Center for Mental Health Services' Advisory Board and the Bush Administration's budget plans which threaten the survival of national consumer technical assistance organizations funded by CMHS. Satel has publicly denigrated the consumer organizations and is believed to be a prime instigator behind the Administration's plans to abandon them.

NYAPRS members and staff have called on the White House on all 3 issues over the past few months and joined a recent Maryland rally protesting Satel and E. Fuller Torrey's attacks on the consumer and cultural diversity movements and on the national consumer organizations.

To see Michael Hogan, chairman of the President's New Freedom Commission on Mental Health and Ohio Department of Mental Health Director describe the commission's mission and current plans, view the C-Span interview at http://www.c-span.org/social_policy and click on that link.

Hogan announced yesterday that the Commission will seek comments in a new website, http://www.mentalhealthcommission.gov, that will be up shortly.

President Bush's attack against all disability and mental health groups:

But this time we are not alone!

President's New Freedom Commission begins - with only one consumer rep.

Satel appointment to an advisory committee confirmed.

People's True Freedom Commission is launched!

by David Oaks, Director
Support Coalition International

PENTAGON CITY, WASHINGTON, DC: There we were yesterday in a ballroom of the incredibly high-priced Ritz Carlton Hotel, not far from the Pentagon. We were psychiatric survivors and disability leaders scattered throughout an audience of 100, watching in disbelief as the first meeting of the President's New Freedom Commission on Mental Health began.

We were watching a triple play by President Bush against the entire cross-disability movement, by targeting the most vulnerable: psychiatric survivors and mental health consumers.

But this time we were not alone in standing up for our rights.

BUSH TRIPLE PLAY

1) We watched that morning as 15 Bush appointees on this mental health commission introduced themselves, and only one identified himself or herself as having personally experienced the mental health system, or as a leader of a mental health consumer/psychiatric survivor organization.

2) During a break, we heard personally from Charlie Curie, administrator of the US Substance Abuse/Mental Health Administration, that the appointment of extremist psychiatrist Sally Satel to a key federal advisory role was a done deal. Mr. Curie told us, "I support her appointment. The paper work had been signed. The decision won't be changed." (Satel will be on the National Advisory Council for the US Center for Mental Health Services, not to be confused with the President's Commission.)

3) And the third part of the triple play: In the audience were hard-working long-time leaders from each of the three federally-funded national technical assistance centers for consumer/survivors. President Bush's reward for their fight for true freedom? His budget promises 100 percent "termination" of all funding for these centers in one year.

WE'RE BACK AT BAT AND WE'RE NOT ALONE!

By making public announcements during break times, by handing out our own news release, and by individually talking to the Bush Commissioners, we made sure everyone in that Ritz ballroom yesterday heard the news about the competition:

We announced the People's True Freedom Commission, created on June 14, 2002 by a rapidly growing network of disability and psychiatric survivor/mental health organizations. We made sure everyone at the President's Commision first meeting had a copy of the speech made by Justin Dart at the first meeting of the People's Commission. Justin is widely considered one of the main leaders of the disability movement. He began the People's Commission launch by saying, "I propose that we of the disability communities unite with all who love justice to lead a revolution of empowerment." For background on the People's New Freedom Commission, including the full text of Justin Dart's speech, see:

http://www.mindfreedom.org/mindfreedom/bush_c.shtml

Since that launch just five days ago, we are seeing unprecedented unity, bridge building and calls for action in the consumer/survivor and disability movements.

I learned something about federal meetings like the President's Commission, which intends to hold meetings in various parts of the country over the next 11 months. They must be publicly announced and open to the public, except under certain very-narrowly defined conditions. And during break times -- just before the meeting, during breaks, and just after the meeting -- the First Amendment kicks in.

So near the end of a break, as the audience and commissioners took their seats, and just before chair Michael Hogan, PhD, re-started the meeting, I stood up and addressed everyone. To his credit, Dr. Hogan let me complete my short speech.

I told everyone about the Bush triple play. I told them about how cross-disability and mental health consumer and psychiatric survivor groups were uniting. I told them about the People's True Freedom Commission.

And I pointed something out:

"If this was a President's commission about women's issues, imagine 14 of the 15 commissioners being men. Imagine the President had just appointed an openly sexist man to another federal advisory committee on women. And imagine the President also announced all federal funding for technical assistance for women's organizations would be terminated in a year. This room would be filled with nonviolent protesters today."

Judi Chamberlin, who is on the board of Support Coalition International, was also there watching the disaster unfold at the Ritz Carlton yesterday. She was of course disgusted. Judi told a media representative, "Back in 1979 President Carter also had a blue ribbon commission. There was only one token psychiatric survivor/mental health consumer on that commission, too. We're in the same position 23 years later."

But there's a difference this time, Judi... We didn't fill the room with nonviolent protesters yesterday, though I personally hope and pray we will some day soon. But I felt a subtle difference in the air in that ballroom.

As I sat there in the ballroom feeling the deep insult of this triple play, Jim Ward quietly took a seat next to me. Jim is director of the ADA Watch, which unites 400 groups to defend the ADA. ADA Watch is a founding organization in the People's Commission. Jim helped organize the People's Commission, and is himself a psychiatric survivor. Jim said ADA Watch intends to participate in a news event during the anniversary of the ADA, on July 26, 2002 about this crisis.

We're not alone this time.

And into the ballroom walks Tom Olin, from the Disability Rights Center in D.C., and one of the premiere photographers in any social change movement. Tom quietly began to record and archive the events that day.

We're not alone this time.

During a break, a representative from the large International Association for Psychosocial Rehabilitation expresses his concern, and he tells me IAPSRS would be interested in being on the People's Commission.

We're not alone this time.

Members of the West Virginia Mental Health Consumers Association say "hi" and tell me they're on board.

We're not alone this time.

And as the President's Commission starts I hear a familiar booming voice from the other side of the audience, pointing out the irony that a meeting about one of the poorest constituencies is held at the Ritz. "The rooms here are $300," says the voice. It's Joseph Rogers, director of the National Mental Health Self Help Clearinghouse, on the People's Commission. During a break, Joseph introduces me to a young law student who will help the People's Commission.

We're uniting this time.

As the Commissioners introduce themselves, we hear from one of the first "mental health court" judges... we hear a Commissioner talk about the importance of "compliance"... but we also hear Dan Fisher -- psychiatric survivor and psychiatrist -- talk about empowerment and self-determination. We hear as he is the only Commissioner to get a loud round of applause from from the audience.

We will be heard this time.

As I write this, Vicki Smith from MadNation in Canada tells me she is setting up an e-mail list for the People's Commission. Vicki also pointed out how this Bush triple play is an attack against the entire disability movement. President Bush is supposed to have a commitment to "freedom" for all people diagnosed or perceived as having disabilities. See the MadNation web site about the Bush promises:

http://www.madnation.cc/issues/freedom/index.htm

These are the six points Bush promised for freedom for all people with disabilities:

1. Increasing Access to Assistive and Universally Designed Technologies
2. Expanding Educational Opportunities
3. Promoting Homeownership
4. Integrating Americans with Disabilities into the Workforce
5. Expanding Transportation Options
6. Promoting Full Access to Community Life

Says Vicki, "We want assistive technology, homes of our own, employment, a chance to go to school, transportation and full access to community life too. These are our issues, but as the New Untouchables we are likely to get brain damaging 'treatment,' mental health courts, and a federally sanctioned mental health militia in the name of 'improved systems' instead."

We're taking strategic action this time.

As I write this, Lawrence Plumlee, MD is giving his public comment (copied BELOW) to the President's Commission, on behalf of Support Coalition International. In the three minutes allotted he planned to focus on lack of full informed consent for people prescribed psychiatric drugs.

We will not be silent this time!

 

From "Lawrence A. Plumlee, MD" <laplumlee@pol.net>
Founder, National Capital Area Advocates Bethesda, Maryland

I'm Larry Plumlee, a graduate of Johns Hopkins Medical School and formerly on the faculty there in the the Dept. of Psychiatry and Behavioral Sciences.

I've worked in toxicology for the U.S. Public Health Service and Environmental Protection Agency. Today, I represent the Support Coalition International, a coalition of 100 groups of psychiatric consumers and survivors.

We believe that consumers should have full disclosure about the risks of proposed psychiatric treatments, and choice from a range of alternatives. We want consumers to have informed consent, difficult as that may be to provide during a time of crisis.

Many of our members choose drugs, others do not.

I'll read you a few abridged lines from the book _Mad in America_ by Robert Whitaker that illustrate information which patients are not given:

"In 1967, NIMH investigators reported, much to their surprise, the patients that had not been treated in hospitals with drugs 'were less likely to be rehospitalized than those who received any of the three active phenothiazines.' Four years later, NIMH physicians were back with another disturbing finding. Relapse rates rose in direct correlation to initial drug dosage, and the no-dosage group had by far the lowest relapse rate. Only 7 percent of patients who weren't medicated at the start of the study relapsed, compared to 45 percent who were placed on neuroleptics then withdrawn."

Today we know that the risk of neuroleptics includes significant structural brain change in the size and shape of the brain, as shown on MRI and CT scans. Patients are not warned about this, and usually, not even about tardive dyskinesia and dystonia.

The newer antidepressants of SSRI type carry a significant likelihood that patients will be worse when they are stopped than they were before starting them. Informed consent about this discontinuation syndrome is usually not being provided to the patient before these drugs are recommended.

Thank you very much.

 

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