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Huffington Post Bloggers Clash About "Alternatives 2010" -- Mental Health Consumers and Psychiatric Survivors Center of Storm

Author and Psychologist Bruce Levine Accuses Blogger D. J. Jaffe of "Bigotry"

When more than 1,000 people diagnosed with psychiatric disorders gathered for an historic conference, they didn't know that finding their voice would bother some people. A lot.

Huffington Post blogger D. J. Jaffe tore into the conference. Because organizers tried to find more inclusive language than "mentally ill," for instance, Jaffe accused the conference of "shunning the mentally ill."

Jaffe has an axe to grind, because he's one of the main crusaders for laws that would increase involuntary psychiatric drugging of people living in their own homes in the community.

Psychologist and author Bruce Levine is also a "HuffPost" blogger. And he has accused Jaffe of bigotry. You can read Levine's post here: http://3.ly/levinejaffe

Alternatives Conference Report by Harvey Rosenthal

Harvey Rosenthal from NYAPRS (New York Association of Psychiatric Rehabilitation Services), wrote the following about the Alternatives Conference.

I’ve just returned from Alternatives 2010, “a national mental health conference organized by and for mental health consumers and survivors” that is aimed at offering “in-depth technical assistance on peer-delivered services and self-help/recovery methods” in “a rich social, artistic, and healing environment.” The conference is sponsored by SAMHSA and has a long tradition of offering inspiration and information to thousands of Americans who have been interested in exploring the latest innovations and advances in mental health recovery and peer support. This year’s conference was organized by the National Empowerment Center and was another extraordinary success. This year’s conference was also particularly notable for the important controversies it stimulated.

Questions were raised about the appearance of keynoter Bob Whitaker, a Pulitzer Prize winning journalist and past NYAPRS Conference keynoter whose work on challenging the use and overuse of psychiatric medications and its impact is highlighted in his two books “Mad in American,” and “Anatomy of An Epidemic.”

As Whitaker states in the Huffington Post, “This does not mean that antipsychotics don't have a place in psychiatry's toolbox. But it does mean that psychiatry's use of these drugs needs to be rethought.” He goes on to cite “ a model of care pioneered by a Finnish group in western Lapland (that) provides us with an example of the benefit that can come from doing so. Twenty years ago, they began using antipsychotics in a selective, cautious manner, and today the long-term outcomes of their first-episode psychotic patients are astonishingly good. At the end of five years, 85% of their patients are either working or back in school, and only 20% are taking antipsychotics.” [www.huffingtonpost.com/robert-whitaker/anatomy-of-an-epidemic-co_b_555572.html]

Later in the day, psychiatrist and recovery innovator Dr. Mark Ragins, another frequent NYAPRS Conference speaker, offered a keynote that lauded Whitaker’s contributions yet sought to focus on several other aids and obstacles to recovery. Both speakers appeared to agree that, in this place in time, medication should take its place as one of many tools to recovery, increasingly as an adjunct rather than replacement for the psychiatric rehabilitation and peer support that everyone should equally receive.

Concerns were also raised about the wording and intent of an Alternative workshop offered by Will Hall, a noted “mental health advocate, writer, and counselor,” and his workshop “Coming Off Medications: A Harm Reduction Approach.”

Finally, another controversy came in the form of an attack on Alternatives in the form of a Huffington Post column by noted proponent of outpatient commitment laws DJ Jaffe. I have included below Jaffe’s posting, followed by Huffington Post responses from current and next year’s Alternatives organizers Dan Fisher and Joe Rogers as well as from Will Hall (www.huffingtonpost.com/dj-jaffe/people-with-mental-illnes_b_746222.html).

We owe SAMHSA and the National Empowerment Center a great debt for offering us yet another terrific conference and an historic and courageous opportunity to advance our combined efforts to promote recovery and community integration for all! I believe you will be able to purchase audio CDs of the keynotes and workshops in the coming days: look to www.power2u.org/alternatives2010 for details.

People With Mental Illness Shunned by Alternatives 2010 Conference in Anaheim. DJ Jaffe, Huffington Post, September 30, 2010

During the first week of October, mental health advocates around the country will gather to celebrate Mental Illness Awareness Week (MIAW) by shunning the seriously mentally ill. The most egregious example of this "celebration" will take place this weekend at the Alternatives 2010 conference in Anaheim, California.

The Alternatives 2010 conference is a gathering of "consumers and survivors of mental health services." They use that language, because many in the leadership believe mental illness doesn't exist and is merely a label society uses to control them. By failing to include "people with mental illness" in the list of 'consumers' and 'survivors' who are invited, they are sending a not-so-subtle message: mentally ill not welcome. The term "mental illness" isn't even allowed in the program.

For the 'labeled' participants, there will be a workshop on how to go off medications. That could be a dangerous, if not deadly, 'alternative,' should someone with schizophrenia who needs medication to prevent them from deteriorating decides to do it. (See note below-ed). The keynote speaker wrote, "Antipsychotic drugs do not fix any known brain abnormality nor do they put brain chemistry back into balance." One wonders if he ever met anyone with schizophrenia when they were on and off medications.

While proclaiming mental illness doesn't exist, the Alternatives 2010 leadership purports to speak for people who have it. The 'celebration' is funded with our taxes by the Substance Abuse and Mental Health Services Agency (SAMHSA). Dollars meant to help people with mental illness are instead going to people who deny its existence.
This may all be fun and fine for the high-functioning professional consumers ("Consumertocracy"), but what about the others? People who aren't merely 'labeled' mentally ill, but are.

People like my sister-in-law, who suffers from the most devastating and debilitating mental illness: schizophrenia. Will you see people like her in MIAW public service announcements or being welcomed at the Alternatives Conference? How about the homeless or those actively hallucinating and experiencing psychosis? The mere existence of very symptomatic people is inconsistent with the MIAW and Alternatives narrative that people with mental illness are just like you and me……”

***We invite everyone who participated in the conference to write your own comment at the Huffington Post online:***

Below are responses from Daniel Fisher, Will Hall and Joseph Rogers. There are many other interesting responses also.


Daniel B Fisher 10/02/2010
Mr. Jaffe seriously misrepresents both the spirit and the purpose of the Alternatives Conference.

Contrary to his claim, the term “consumer/survivors” includes every person who has had mental health challenges, past and present. The Alternatives Conference represents a hopeful gathering of over 1200 people, the majority of whom have been diagnosed with severe mental health issues, have had experiences of homelessness, institutionalization, and incarceration, and many have gone on to recover and live full lives in the community. I am one of those people. I was diagnosed with schizophrenia and hospitalized on 3 occasions prior to becoming a psychiatrist.

We believe that it is the right of every person to make informed choices about their medical treatment, including how to reduce or discontinue medications, if a person chooses to do so, through shared decision making with a medical professional.

Many of us have experienced coercive treatment, which we found to be re-traumatizing. That is why our advocacy efforts focus on providing compassionate, voluntary alternatives such as peer support, crisis alternatives, and psychosocial rehabilitation.

No one at this conference denies the intense confusion, pain and suffering that is diagnosed as mental illness. We believe that changing policy and practice to promote recovery-oriented, trauma-centered approaches will improve outcomes and result in greater social inclusion for people with mental health issues. Far from wasting money many, economical innovations are being described at the conference. What a shame D.J. did not attend. Daniel Fisher, CEO of NEC

Daniel B Fisher 10/02/2010

Mr. Jaffe. I am Dr. Fisher. I would like you to acknowledge my credentials and the work that went into obtaining a PhD in biochemistry, an MD, with board certification in psychiatry, and my recovery from schizophrenia. I feel I qualify as an expert on the topic. I do not deny that I and many others who attend our conference have and are experiencing extreme mental states which at times compromise our ability to work and engage in meaningful relationships. However, many of us have found that our recovery is interfered with by a narrow, pathological model represented by the term mental illness. I and many of us who have been through the experience choose to describe it as severe emotional distress which interferes with community participation. I know this is longer than mental illness, but research has shown it is less stigmatizing, and it is a better description of what steps people need to take to recover and lead a fulfilling life of meaningful relationships and work. Words are very important. The term mental illness suggests that the major problem is biochemical and medications alone will solve our problems. I and many of us in the consumer/survivor movement understand that medications are one tool among many people can choose to use in their recovery. I also understand that some people choose to describe their mental health issues as mental illness. They should have that freedom just as we should have ours to choose how to describe the problems.

Will Hall 10/02/2010

The author, Mr. Jaffe, has not actually attended Alternatives 2010, and this article misrepresents what is taking place at the conference.
None of the 1200 people here deny the existence of mental illness. Many people diagnosed with schizophrenia, including myself, are in attendance. The workshop on coming off medications is a responsible effort to dissuade people from attempting medication withdrawal abruptly, alone, or without careful preparation. The keynote speaker is a Pulitzer Prize finalist journalist researching the continuing medical mystery of schizophrenia, where no clear causality has yet been established. And I have heard no one claim we are "just like you and me."

Will Hall 10/02/2010

Mr. Jaffe has portrayed the Alternatives conference from his own imagination, not reality, to advance a narrow political agenda. In so doing he has failed to meet even the most basic standards of journalism, and done a great disservice to the front-line healthcare staff at the conference who dedicate themselves every day to helping people diagnosed with mental illness.

Mr. Jaffe, all the attendees at Alternatives 2010 have devoted our lives to helping people suffering from the realities of mental illness. We have lived through these realities ourselves. There is not a single person here who believes that suicide, anxiety, paranoia, depression, hearing voices, self-harm, trauma, isolation, detachment from reality, mania, loneliness, discrimination, unemployment, or homelessness, are "myths." Dr. Daniel Fisher, who organized the conference, has himself recovered from schizophrenia and speaks openly and courageously about the extreme and very real pain he endured. Your continued misrepresentation of this conference is disrespectful and irresponsible.

Joseph Rogers 10/02/2010

As one of the founders of the Alternatives conferences and as someone who has helped organize many of them and has attended every single one of them (since 1985), I can say that D.J. doesn’t know us or understand much about us. I am someone who proudly talks about my continuing recovery from mental illness. I take medication to help me in my recovery, and no one at the Alternatives conference has ever made me feel unwelcome. The irony is that the Alternatives conference is made up of people from a movement that has great diversity, ranging from those who feel that being called mentally ill is perfectly correct to people who would rather not be called mentally ill. Recovery is a very individual thing, and unless we have opportunities like the Alternatives conference to meet with our peers and share our stories of recovery, it would be hard to imagine how we could spread the word that recovery is possible. I have also been very active with NAMI, I have spoken at their conferences several times and was one of the people who was involved in the founding of the NAMI Consumer Council, and I know that many people in NAMI agree that recovery is possible and that there are many paths to recovery. As executive director of the organizing organization for next year’s Alternatives conference, I look forward to seeing the dialogue continue with the many diverse voices that we have that celebrate Mental Illness Awareness Week.

Mad in America, Psychology Today Blog by Robert Whitaker, October 6, 2010

The Alternatives Conference and the Story of an Opportunity Lost: The Medication Taboo in the Land of Free Speech

In the last chapter of my book Anatomy of an Epidemic, I noted that if our society is going to stem the epidemic of disabling mental illness that has erupted during the past twenty years, then it needs to have an honest discussion about what is truly known about the biological causes of psychiatric disorders, and an honest discussion about how the medications affect the long-term course of those disorders. The illuminating powers of science could work their usual magic. But that is a discussion that many in our society don't want to have, and my recent experience at the Alternatives conference in Anaheim illustrates that point, and reveals too why this is such a loss.

Read the entire article and post a comment here: www.psychologytoday.com/node/48811

'Coming Off Meds' back on agenda, Boston Globe Blog, September 27, 2010

www.boston.com/news/health/blog/2010/09/coming_off_meds.html
 

Alternatives 2010 is funded by the US Department of Health and Human Services, Substance Abuse and Mental Services Administration