The Making of the Harm Reduction Guide to Coming Off Psychiatric Drugs
Submitted by Icarus Project on Sat, 09/29/2007 - 10:32pmIt's been a constant but unmanifested presence for nearly a year now, like a seed growing from deep inside, or a haunting voice that needs to speak. And now the first edition of the Harm Reduction Guide to Coming Off Psychiatric Drugs is here.
More than 40 collaborators of all kinds and contributions pulled together from several countries to make it happen. They read drafts, gave feedback, offered ideas, submited art, reshaped language, tweaked sentences, debated science, edited grammar, and otherwise breathed life into the project. This vast conspiracy included 14 health care practitioners (6 MD's, 4 RN's, several psychologists, and two acupuncturists), 24 allies and friends (including key long-time counselors from the Freedom Center), several artists and photographers, and an awesome designer (Carrie Bergman of the Center for Contemplative Mind in Society). I may have been the main writer and researcher, but the voices and experience behind the guide were truly collective.
Some of the people involved were: Amy Bookbinder, Dave Burns, Oryx Cohen, Mary Kate Connor, Marc Dinacola, Dianne Dragon, Sascha DuBrul, Empties, Vikki Gilbert, Chaya Grossberg, Richard Gilluly, Molly Hardison, Gail Hornstein, Mollie Hurter, Jonah, Krista MacKinnon, Ashley McNamara, Alex Samets, Seven, Bonfire Madigan Shive, Jessica Max Stein, Terramuggus, and contributing artists Fly, Gheena, Miss Led, Erik Ruin, Janice Sorensen, and Bec Young. And I want to thank others who's names were possibly omitted from this list!
We wanted -- and I think succeeded in creating -- a guide that would accurately represent psych drug risks and benefits fairly, without falling into simplistic pro- or anti- camps. We wanted to give essential lessons about how the coming off process works, without acting like we could predict what people would go through or provide any kind of definite blueprint for action. We wanted to counter pharmaceutical propaganda and psychiatric myths, but also avoid just putting out our own counter-propaganda. We had to distill years of experience, testimony, stories, insights, lessons, and crucial wisdom gained from hundreds of individual peer counseling connections Icarus and Freedom Center have made. We wanted to explore the helpfulness of meds for some people in the same discussion as we explored the harm of meds for others. We needed to cover complicated issues like biology and genetics accurately, and gather the most state-of-the-art research in a very politicized and confusing area of science. We had to ensure the factual information was all backed up and air-tight (thanks to the British survivor movement for their help in this), and fearlesslessly swim against the brain-disorder mainstream belief system, while also not making any claims we couldn't support with solid sources. We had to truly create new language for things rarely discusssed before, including new ideas like "diverse-ability" and "mad maps." We needed to include reference to the key works that have come before this guide, works that were our stepping stones. And we needed it all to look beautiful, consistent with the message that creativity is at the heart of so much of "madness."
This was an hugely challenging task. The main crew from Icarus and Freedom Center had to not only do all this, but also actively involve collaboration and feedback from several dozen people from several countries, some on meds, some off meds, some in between, all of whom had strong opinions. What kept it all going was the supportive atmosphere surrounding the work -- in keeping with the Icarus and Freedom Center values, we know that stress is just not worth it, that it was ok to slow down at times and accept delays to get it right. Criticism became the grounds for deepening and strengthening the writing. Dozens of drafts went back and forth, hundreds of emails discussed needed changes. When fierce objections were raised -- such as by a few strongly anti-medication reviewers, or strongly pro-medication reviewers, or both -- we used this as an opportunity to clarify and improve the language and message, and learn how to better shape our vision. We realized we were trying to strike a balance in one of the most divisive and difficult issues there is, an issue that affects millions of people very personally and often feels life-or-death. We also knew that we were providing an invaluable service, that over the years tons of people have asked for this kind of guide, and now we were actually going to create it for them.
Ultimately it was the spirit of caring that brought the Harm Reduction Guide to Coming Off Psychiatric Drugs into existence. Readers and collaborators, whether on meds, off meds, trying to get off, going back on, or unsure, all shared a basic vision: Support people. Help people. Reach out to people. Create a space and voice beyond pharmaceutical company TV ads. Let people know the most important message of all: You are not alone.
Looking back on the tumultuous and deeply enriching experience of writing this guide, and thinking of all the amazing contributions from so many people, I want to especially recognize the crucial role that Bonfire Madigan Shive of Icarus played. From her experiences as a mental health advocate in California, Madigan brought forward the vision of making this a Harm Reduction guide. Harm reduction is a movement around drug use, sexuality, and health education that sees risk reduction, trade-offs, choice and self-determination as central. Bringing this language and approach to medications and emotional distress proved to be vital. This single concept focuses in a powerful phrase the guide's move beyond the impasse of pro- and anti-, beyond the Cold War the mental health consumer/survivor movement seems to have been waging for decades, beyond preaching, beyond either-or thinking, and beyond rigid dogmas and formulas. Life is too complicated. Madness is too mysterious. Suffering is too complex. And individual paths to healing and change are just that -- individual. Harm Reduction is all about meeting people where they are at, supporting steps towards healthy choices among imperfect options, allowing people to make their own decisions, and trusting that all of us, no matter how hard our struggles are, has a potential for healing and growth. In our own way, on our own time, as we define it for ourselves.
Now comes the next step. Read the guide and help us distribute it. It's free to download from The Icarus Project and Freedom Center web sites. Post the .pdf files anywhere on the internet. You can print out as many copies as you like, you can order published copies with color covers, and you can always get multiple copies cheap to distribute through your organization and in community (contact orders AT theicarusproject DOT net). And above all, give us ideas of what's missing, what can be improved, and what needs to be changed. The Second Edition is coming soon, and with your help, we want to make the guide even better.
Thanks to everyone at The Icarus Project and Freedom Center for a great collaborative venture, and here's to a world where healthy, strong communities make the mental health system obsolete.
-- Will Hall
no mention of Peter Breggin's book, why?
I was just curious about why there was no mention of Peter Breggin's input on this, re: his book _Your Drug May Be Your Problem: How and Why to Stop Taking Psychiatric Medications_
by Peter Breggin M.D. and David Cohen Ph.D. 2007 updated paperback edition. Hardback published 1999 by Perseus Books, Reading, MA.
Is his writing considered "too" anti or something? I'd like to read people's comments, for sure! Now, this book above is the one i just found at his website www.peterbreggin.com, but i also recall that his 1990 book _Toxic Psychiatry_ had some advice about going off drugs (that is, don't do it suddenly!).
So, yeah, i'm just wondering if his input was seen as valuable at all, and why or why not?
Hi Chas, Dr. David Cohen,