Category Archives: Blog

Paid Pharmaceutical Company Consultants are Fans of Madness Radio…

Janssen_Pharmaceutica-logoI just received an interesting email about National Family Caregiver’s month. Apparently Madness Radio has fans at Janssen Pharmaceuticals…

Follow the asterisks…

Thu, Nov 4, 2010 at 12:09 PM
Subject: Interview opportunity regarding schizophrenia

Hi Will,

We have an interview opportunity which I think would be a great fit for Madness Radio. The interview is with a schizophrenia patient and her mother. They are trying to raise awareness about caring for people with schizophrenia. Please see below for a press release. Please let me know if you have any questions or would like any additional information. We could tape the interview on our end and send an mp3 file if that would help? The patient and her mother both requested that we reach out to you, they are fans of your program.

Best Regards,
Rob Gottlieb

RADIO INTERVIEW OPPORTUNITY
Tuesday, November 23, 2010
7:00 a.m. – 11:30 a.m. ET
THE CHALLENGES OF CARING FOR SOMEONE WITH SCHIZOPHRENIA

Mom discusses stigmas, how to stay positive and ways to provide encouragement

November is National Family Caregiver’s Month

Decades ago, psychiatric institutions were largely in charge of caring for patients with schizophrenia. Now, families play a much larger role. Research shows a profound psychosocial, physical and financial impact on the families of people with mental illness. The burden of caring for people with schizophrenia is comparable to that of caring for people with Alzheimer’s Disease or cancer. Yet, these caregivers tend to be overlooked.

There are many concerns in caring for someone with schizophrenia, including housing, financial and social difficulties. Another concern is helping a loved one with schizophrenia keep up with his or her full treatment plan, which usually includes medication, psychotherapy and other activities. While there is no cure for schizophrenia, treatments have been found to manage symptoms and reduce the risk of relapse. Claire advises, “Think in terms of the recovery process. There are many avenues of help along this path. Be glad you are able to take advantage of the abundance of supportive resources we have today—better than at any time in the past.”

Given that November is National Family Caregiver’s Month, we hope you’ll consider exploring this topic and are offering interviews with:

Claire and Rebecca Phillips,* a mother-daughter pair who have been working together to deal with the challenges of schizophrenia since Rebecca’s diagnosis in college. They can share insights and advice from both perspectives. “Realize that the symptoms are not the person! The diagnosis is not the person! The family member needs your positive attitude and encouragement,” says Claire.

Psychiatrist Rebecca Roma, MD,* is Medical Director of the Community Treatment Team at Mercy Behavioral Health in Pittsburgh, Pennsylvania. “Unlike other disabilities, the lack of insight that can occur with people with schizophrenia makes offering support a challenge,” she says. Dr. Roma is only available between 7-9 a.m. ET.

SUGGESTED QUESTIONS:
Is there a stigma associated with having schizophrenia? What are some of those stigmas?

What is schizophrenia? How can you recognize that someone may have schizophrenia?

When did you find out that you/your daughter had schizophrenia? Did you know anything about the disease at that time?

How did the diagnosis affect you/your family?

What are some of the challenges of being caregiver for someone with schizophrenia?

What advice do you have for people who have a family member that has been recently diagnosed with schizophrenia?

What are some the supportive resources you rely on to help you provide care for your daughter?

TO SCHEDULE AN INTERVIEW, PLEASE CONTACT: Robert Gottlieb @ (908) 301 0819

This interview is courtesy of Janssen®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.

*These individuals serve as paid consultants by Janssen®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc. for their involvement with this awareness initiative.

Update: Alternatives Mental Health Conference Restores Coming Off Medication Workshop

Alternatives 2010 Logo

In a sudden reversal, the National Empowerment Center has announced it is restoring my workshop on coming off psychiatric medication at the Alternatives 2010 mental health conference in Anaheim California. (You can read about their original decision here: https://www.madnessradio.net/coming-off-medications-workshop-censored)

The National Empowerment Center, organizer of the annual event, had censored “coming off medications” from the workshop description and title, which led me to decide to not attend the conference. News spread quickly on the internet, and the resulting outcry from mental health consumers and the public led to the workshop’s reinstatement and an apology from Daniel Fisher, Director of the National Empowerment Center.

I want to thank everyone who spoke up about this. I hope the change is a sign that mental health policy can become more honest about medication risks and more open to the need many people have for alternative choices. I also want to thank Dan Fisher and the National Empowerment Center staff personally for the thoughtful discussions we’ve had on this matter. By including coming off medications as part of the conference agenda, they are helping promote the wellness and self-determination that are at the heart of what our movement stands for.

Here is the announcement that Dan sent out today:

1:01PM 09-27-2010
Good news re: workshop by Will Hall at Alternatives 2010

Please forward widely. Thanks, Dan

On behalf of the National Empowerment Center, Inc., I wish to apologize to Will Hall and to the consumer/survivor community for the last-minute decision to alter the title of his workshop to remove the reference to coming off medication.

The original workshop title, “Coming Off Medications: A Harm Reduction Approach,” will be restored, and we are delighted Will has agreed to come to Alternatives and present on this subject as originally planned.

I appreciate that this issue has created an opportunity for significant dialogue. It is my expectation that this dialogue about the importance of shared decision-making on starting, reducing, or coming off medications will continue, at Alternatives and beyond.

Daniel B. Fisher
Director
National Empowerment Center, Inc.

Coming Off Medications Workshop Censored at ‘Alternatives 2010’ Mental Health Conference

Alternatives 2010 Logo

UPDATE: The National Empowerment Center has reversed its controversial decision amid public outcry, and the workshop will be restored. Read about the reversal here: https://www.madnessradio.net/update-coming-off-medication-workshop-restored

Hi everyone, I’m writing to let you know that Alternatives 2010< has withdrawn its previous approval for my workshop on coming off psychiatric medications. Two days ago I received word that the National Empowerment Center decided to rewrite the workshop description to exclude any reference to "coming off medications," which is a central part of the workshop content. Because I cannot go along with this decision I will not be attending the conference. Below is a press release explaining the situation; please share this with others if you are interested."

PRESS RELEASE:

MENTAL HEALTH CONFERENCE CENSORSHIP

Coming Off Medications Workshop Censored at ‘Alternatives 2010’ Mental Health Conference

Alternatives, the mental health consumer/survivor conference with more than 1,000 participants annually, has withdrawn its previous approval for a workshop on coming off psychiatric medications.

The workshop, based in a pro-treatment choice, harm-reduction philosophy, was to share information about continuing, reducing, or coming off medications. After approving the workshop in June, the National Empowerment Center, which organizes the conference to be held in Anaheim California, made a last-minute decision to change the title and description to remove any reference to coming off medications.

Will Hall, an internationally-recognized schizophrenia survivor and radio host who was set to lead the workshop, decided that he could not go along with the decision and will not be attending the conference. “Coming off medications is a topic vital to wellness and recovery, and should not be censored,” he said.

The controversial move by the National Empowerment Center comes in the wake of a recent similar decision to bar Robert Whitaker, a Pulitzer finalist investigative journalist whose work spotlights medication dangers and growing evidence that non-drug alternatives work better for some patients. Whitaker was restored as a conference keynote speaker only after mental health advocates mobilized quickly on the internet to challenge the decision.

The annual Alternatives conference is organized by consumer/survivor groups and federally funded. With workshops ranging from wellness, youth, housing, employment, advocacy and diversity issues, Alternatives is the country’s most prominent gathering for mental health consumers, who attend from all US states and as far away as Guam. Medication issues, however, have consistently been excluded from the program.

Hall, who works as a therapist, says he educates individuals, families, and health care providers to make more informed choices,and is not anti-medication and does not give medical advice. “People are caught between pro-drug marketing by pharmaceutical companies and the anti-drug message of some activists. We need honest and unbiased information about psychiatric medications, including assessing drug risks and discussing how to come off drugs safely when they aren’t right for you. Many people find medications helpful, but there are huge dangers involved, and sometimes it’s better to reduce medication or slowly go off.

After several hospitalizations and a diagnosis of schizoaffective disorder schizophrenia, Hall has been medication-free for more than 17 years. He says a combination of holistic health, support groups, and spiritual practice nurtured his recovery from mental illness, but believes that “each person’s path to recovery is different. My work fills a great need for information, and it’s a shame this topic is censored at a national conference that claims to be dedicated to wellness and calls itself ‘Alternatives.'”

Hall is the author of the Harm Reduction Guide to Coming Off Psychiatric Medications, published by mental health peer groups The Icarus Project and Freedom Center. The guide, available freely on the internet, has been distributed to more than 15,000 people and is available in Spanish and German translations.

http://theicarusproject.net/HarmReductionGuideComingOffPsychDrugs

Robert Whitaker “Anatomy Of An Epidemic” At Powells Aug 2010 – Video + Audio

Robert WhitakerRobert Whitaker, author of Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, spoke in Portland Oregon August 19 2010, at events sponsored by Portland Hearing Voices and co-sponsored by the Mental Health Association of Portland, Empowerment Initiatives, and the National Association of Social Workers – Oregon Mental Health Network.

More than 250 people attended the standing-room only talk at Powell’s Books; some 65 people were at the afternoon seminar “Ethical Medication Policy In Clinical Settings,” and more than 30 at the morning forum for people with mental health diagnosis, “Medications and the Recovery Movement.” Will Hall introduced Whitaker at Powells and spoke at the other events,and Myriam Rahman, therapist and Portland Hearing Voices trainer, as well as recovery movement leaders Laura Van Tosh and Mike Hlebechuk, were also speakers.

Listen to the audio recording of Whitaker and Will Hall at Powell’s here:
https://www.madnessradio.net/audio-extra/RobertWhitakerWillHallPowellsBooks08-19-2010-.mp3

Listen to the audio of Whitaker, Will Hall, and Myriam Rahman at the MedicationEthics seminar here:
https://www.madnessradio.net/audio-extra/RobertWhitakerWillHallMyriamRahmanEthicalMedication08-19-2010.mp3

You can watch the video of Whitaker’s talk at Powell’s Books here:

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Will Hall Talk On Hearing Voices at Toronto Voices Conference – Audio

I just gave a talk in Toronto Canada as part of the “Do You Hear What I Hear? Alternative Perspectives on the Voice-Hearing Experience” conference.

The gathering brought together 150 participants, a mix of people with psychiatric diagnoses, family members, professional service providers, and the general public to hear about a non-pathologizing and empowering way of approaching voice-hearing. Also on the panel were Rufus May and Jacqui Dillon of the UK Hearing Voices Network. The conference was organized by the Leadership Project in Toronto and was part of the city’s Mad Pride celebration, and was the kickoff event for the new Canadian Hearing Voices Network.

You can listen to audio of my talk here:

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Portland Hearing Voices Poetry Event Draws a Crowd – Audio

Madness Poetry Someday Lounge July 13Portland Hearing Voices, the support and education project I direct in Portland Oregon, recently had a Poetry and Madness Benefit show at the Someday Lounge. Prominent poets Emily Kendal Frey, Zachary Schomburg, and James Gendron read their beautiful and powerful writing, and myself, Myriam Rahman, Anusuya Starbear and Jenny Westberg talked about Portland Hearing Voices and our work for mental diversity.

Read about it at the Mental Health Association of Portland website, and you can listen to the complete audio recording of the event here:

https://www.madnessradio.net/audio-extra/PoetryAndMadnessSomedayLoungeJuly13-2010PDXVoices.mp3

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New Monthly Format — One Hour and 30 Minute Versions

Hi everyone, because of limited resources Madness Radio is going on a monthly format for a while. Without any funding coming in I can’t currently financially manage to produce the show more often.

I’m also preparing two versions of the monthly show — the regular hour long version you’ll see listed with the other shows and on the podcast feed, and a special 30 minute version with the same guest. KBOO in Portland is running the 30 minute version monthly, and if you or your station would like the 30 minute version as well just email radio(at)madnessradio.net and I’ll set that up for you.

Not sure how long I’ll be at monthly, but I hope to return to more frequent episodes at some point soon. Keeping Madness Radio going is a great deal of work, so if you can make a tax-deductible donation, or have any ideas of partner organizations or financial resources, please get in touch I’d love to hear your ideas!

Happy almost spring

~~~ Will Hall, Producer and Host, Madness Radio

NPR Morning Edition Features Madness Radio Interview with Judi Chamberlin

National Public Radio’s Morning Edition just did a piece on Judi Chamberlin that uses the interview Madness Radio did with her in 2006; here’s the text of the story and you can listen to it on the NPR site (or listen to the entire Judi Chamberlin interview on Madness Radio here:

https://www.madnessradio.net/madness-radio-judi-chamberlin-psychiatric-survivor-movement

Advocate For People With Mental Illnesses Dies
by Joseph Shapiro

http://www.npr.org/templates/story/story.php?storyId=122706192

Judi Chamberlin, who died this weekend at age 65, was a civil rights hero from a civil rights movement you may have never heard of. She took her inspiration from the heroes of other civil rights movements to start something she liked to call Mad Pride — a movement for the rights and dignity of people with mental illness.

It started in 1966, when Chamberlin was 21 years old and seeing her doctor because she was dealing with a deep depression. “After a while, he suggested I sign myself into a hospital because I was just not functioning, I was so depressed. And I just thought, ‘Oh a hospital’s a place where you get help.’ And you know, I’d been in hospitals for surgery and things like that, and didn’t think of it as having anything to do with your fundamental rights. So I just said, ‘OK, I’ll try it.'”

Chamberlin told her story in a 2006 interview with Will Hall, host of Madness Radio, a program by people like Chamberlin who call themselves “psychiatric survivors.”

“And very quickly, [I] found out that once you sign papers to go in on a voluntary basis, but then you can’t leave when you want to leave, which was absolutely shocking to me,” she said.

She got out of that state hospital and moved to Vancouver, British Columbia, where she lived with other people who’d been diagnosed with mental illness but who’d then gotten government money to develop their own treatments. She recovered and eventually moved to Boston, where she started working with other former American patients who wanted to change the system. They called themselves the Mental Patients Liberation Front.

“When I arrived at this storefront in Cambridge, Mass., I was a senior Harvard student, had been locked up five times, so I was referred by Harvard to volunteer there,” recalls David Oaks, who came to the group in 1976. “And I walked in, and it was a little radical ragtag group, Mental Patients Liberation Front. And Judi was right in the thick of folks, just really warm, community organizer.”

Oaks now runs his own advocacy group, MindFreedom International. Chamberlin was a mentor. “One thing she immediately helped teach a lot of people was basic 101 about mental health liberation: That we’re equal; that we have rights.”

One thing she immediately helped teach a lot of people was basic 101 about mental health liberation: That we’re equal; that we have rights.- David Oaks, of MindFreedom International.

Chamberlin put that basic thinking into a book called On Our Own, which published in 1978. In it, she argued that, as she’d experienced in Canada, just the ability to have some say in your own treatment was a key part of making that treatment work.

Chamberlin’s book became a manifesto for other patients. But it influenced lots of people in the mental health establishment, too. Today, notes Oaks, it’s common for people with mental illness to have a say. “Most U.S. states now have an office of mental health consumer affairs or something to hear the voice of mental health clients,” says Oaks. “And it certainly is people like Judi that did that.”

Robert Whitaker, the author of Mad in America, a history of the treatment of people with mental illness in America, says Chamberlin was “a seminal figure in the rise of the consumer movement.” She was able to get across the patient’s point of view in a way that was strong, but also clear. And that appealed to people in the mental health field who were often the target of her criticism.

“Judi was fierce, incredibly fierce,” says Whitaker. “And by that I mean she knew her mind, she spoke her mind, and she didn’t worry if she offended people who were listening.”

Chamberlin, he says, was irreverent, “brilliant” and “a joy to be around.” He also says she was “incredibly brave,” because “it obviously takes a lot of bravery to confront a society that’s had a different belief before.”

Chamberlin told people with mental illness that they were, like everyone else, people with quirks and differences, but with strengths and abilities, too. She wanted people to reclaim the description “mad” as something that was OK.

“She changed it from a word that was a pejorative word,” says Whitaker. “That was saying to the world at large: We are worthy individuals, and our minds our worthy, and they’re to be respected.”

Chamberlin even used “mad pride” as her e-mail address. “And you can see the historical echoes with ‘black pride’ as well,” says Whitaker. “It absolutely followed in the footsteps of the civil rights movement.”

Chamberlin traveled the world as an advocate, even in the months before her death. She worked at Boston University on mental health issues and started a center with federal funding to support other psychiatric survivors.

More recently, Chamberlin faced another illness: lung disease. And last year, when her insurance company told her she’d exhausted her hospice benefit, she faced going into a nursing home. She started a blog she called Life as a Hospice Patient about her fight to die at home.

Late Saturday night, she died as she wished: at home, in her favorite chair, surrounded by friends and family.

Judi Chamberlin — Always With Us

Judi ChamberlinMovement visionary and activist firebrand Judi Chamberlin will always be with us in spirit. She was a longtime friend and will be deeply missed.

She recently wrote:

I don’t believe in an afterlife; I think when I die it will just be a return to the same nothingness as before my birth. I believe that the only ‘afterlife’ is the way one lives on in people’s memories, and it has been so gratifying to me to hear from so many people who appreciate the work I’ve done and the positive effect I’ve had on their lives. So I feel confident that I will live on in the memories of many, many people, and that thought gives me great comfort.

You can listen to a great interview with Judi here: https://www.madnessradio.net/madness-radio-judi-chamberlin-psychiatric-survivor-movement”

Update: National Public Radio used clips from the Madness Radio interview with Judi for their radio and website profiles.

INTAR Rethinking Psychiatric Crisis – First Breaks (Audio + Photos)

INTAR2009-WillHallI presented at the Rethinking Psychiatric Crisis: Alternative Responses to First Breaks conference in New York City. The conference joined more than 200 researchers, people with psychiatric diagnoses, policymakers, clinicians, advocates, and family members from several countries including Finland and the UK.

The focus was how to understand and promote the growing number of effective and well researched residential alternatives to hospitals, medications, and labeling for people in severe crisis, including Soteria House, Open Dialog, the Runaway House, and the Parachute Project. Check out the slideshow, and more info at the International Network Towards Alternatives for Recovery website. Photos: Brian McKinnon

You can listen to my keynote speech, Why we need alternatives,” here:
https://www.madnessradio.net/audio-extra/WillHallINTAR2009.mp3

Also check the #intar tag on Twitter and on the Portland Hearing Voices Twitter feed: twitter.com/pdxvoices


Created with Admarket’s flickrSLiDR.

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Rethinking Psychiatric Crisis: Alternative Responses to “First Breaks” Conference

Join INTAR for our 5th annual conference on November 23rd at New York University’s Kimmel Center — Rethinking Psychiatric Crisis: alternative responses to “first breaks.” I’ll be presenting, as will Oryx Cohen, Bonfire Madigan Shive, and others.

INTAR will bring experts in Alternatives to New York City from around the world to describe and discuss current alternatives to hospitalization for psychiatric crises.

Download the flyer here: INTARConferenceFlyer2009.NYC.pdf