Institute at the Alternatives Conference 2012
I was standing behind our exhibit table at the Alternatives 2012 Conference. The room was filled with small groups of people, walking along, chatting with each other, stopping to inquire about an exhibit. In the midst of the chaos I noticed a small woman making her way rather furtively between the groups, checking things out and then looking away. When she stopped at our booth I noticed that her mouth was going around and around and her tongue was going in and out, typical of may people who have been on psychotropic drugs. She had tardives dyskinesia. I quietly greeted her. She responded by leaning toward me so no one else could hear and said, “This is the first time I have been out in a very long time.” How hard it must have been for her. Her connection with the world horribly distorted. Can you imagine losing your face? What would that be like? The mental health system and the pharmaceutical industry created this, caused this horrific damage. This system has gone horribly awry. How can they justify this kind of destruction? How can they sleep at night?
At the conference, I led a 3 hour institute in which I hoped to come up with an action plan for ending abuse in the mental health system. We were successful in beginning to develop a plan. And over time I am sure we will have an even better plan in place, acting on it at every opportunity.
For the first hour I asked the participants to share their experiences. About 70 people described their experiences. The story that unfolded was criminal. The world needs to know what they had to say. They reported generation after generation of abuse. They said, “The enormity of the oppression overwhelms us.” It overwhelms me, too. Are things getting better? It is hard to say. I am afraid not. If we are having a hard time, or a family member or friend is having a hard time, should we reach out for help from the horrifically flawed system that the Institute participants described?
Following is the story they painted.
People don’t understand that when they reach out for help for help for themselves or someone they care about, it can have threatening and lifelong consequences. If we ask for help, we risk being given a diagnosis that will stay with us the rest our life, a diagnosis that will limit what we can do, that will limit our relationships and activities, that may cause us to be very poor, to be ostracized and even homeless. We risk being “locked up” for years and years and years. We risk being killed or beaten. We risk being tasered. We risk being transported in shackles and chains with no bathroom breaks. We risk being strip-searched. We risk being incarcerated for weeks without any care or treatment and we risk being put in restraints or seclusion for indefinite periods of time without care for our personal needs. We risk being given dangerous psychotropic drugs like Thorazine, drugs known to have dangerous and life-threatening side effects. We risk being punished or denied services if we refuse medications. We risk being bullied and threatened and ridiculed by people who are supposed to be helping us and keeping us safe. We risk having our children taken away and losing our parental rights. We risk having illegal things done to “us” like physical and emotional abuse and rape and having them ignored because we are “mental patients”.
If we reach out for help, we would be interacting with a system where The Diagnostic and Statistical Manual is being used to determine the course of people’s lives. We would be interacting with a system that won’t give up on the brain disorder belief, the myth of chemical imbalance, and the illness model. We would be interacting with a system that promotes the use of interventions that have not been proven safe and effective, like electroshock and psychotropic medications—interventions that only benefit the doctors, institutions, and corporations. We would be interacting with a system that offers specific desirable services if you accept other mandatory but undesirable treatment. We would be interacting with a system that overmedicates adults and children with dangerous drugs that cause brain shrinkage and lasting side effects like tardives dyskinesia, obesity, and diabetes. We would be interacting with a system where EVERYTHING is being done by set formulas instead of being individualized to meet specific needs. We would be interacting with a system that lumps together “people” that are unwanted by society, forcing them into “one size fits all” paradigm. We would be interacting with a system that may provide two choices– forced treatment or imprisonment. We would be interacting with a system that has chosen to drug more and more and more children instead of finding out what is troubling them and working to correct it–in effect destroying generations – a system that uses chemicals and restraints and sometimes even electroshock on children, yes, children.
Perhaps our voluntary admissions would be changed to involuntary without our consent. Perhaps we would receive involuntary electroshock and forced outpatient electroshock. Perhaps we would end up in a board and care home staffed by “indentured servants” who don’t know our language and have no training. Perhaps we would be traumatized over and over again by staff changes. Perhaps there would be no continuity of care–our care changing depending on who is making the decisions at the moment. Perhaps there would be no transition plans or multiple plans with no instruction on how these plans work together. Perhaps we would end up in “transitional” housing that never ends. Perhaps our needs would be served by “peer” support workers who are peers in name only and have been trained to operate the same as all other staff, effectively relinquishing their role as peers. Perhaps the “peers” have been told not to “rabble rouse”.
These people described a system where clinicians are trained to “observe and describe” and pathologize, rather than how to interact, a system where clinicians and agencies get paid for diagnoses, a system where people who reach out for help are not seen as human, where, when they reach out for help, they are coerced into research projects. They described a system where service recipients are forced to justify and explain common-sense wellness practices and are ridiculed for the use of these practices. They describe a system where billable hours mandates don’t recognize who needs more time and who needs less-a one size fits all approach, where the emphasis is on numbers, and not on people. They described a system where Medicaid waiver reformers blame the users of Medicaid and where electroshock is ordered by doctors, hospitals and agencies as a way to access Medicaid money. They describe a system that not only forces medication but punishes and denies benefits for non-compliance. They describe a system where medical doctors are paid to do mental health screens on everyone, so they do them even on people who only had other medical issues, then use the findings to justify prescribing of psychotropic medication, and where primary care providers disregard our medical input because of a mental health diagnosis.
The list of grave concerns goes on and on. We are all tired and overwhelmed. And yet people need to be heard, their experiences validated.
They spoke out against the advertising of psychotropic drugs in the mass media, and against educational materials on mental health issues being produced by the pharmaceutical companies and distributed in doctor’s offices. They said that State drug formularies are based on pharmaceutical company needs, and not on personal preference or on what helps and is safe for people. They decried the lack of informed consent and said that doctors minimize the side effects and give medication as the only choice and said that personal responsibility and self-advocacy is very difficult after victimization. They said that there is a lack of access to education and information about rights and that provision of service is attached to mandatory treatment and claimed that voter identification laws are prejudiced against people with mental health issues. They said that having a mental health diagnosis prevents people from getting life and health insurance. And people from a Native American community said that health care there is very bad and results in high rates of abuse and suicide. I wonder about the care in other communities that were not represented at our gathering. And they said that long term care destroys natural support systems.
We were bound by conference protocol and so we had to move into discussing strategies for improving this situation and developing an action plan. It was hard to move on. People need to be heard on this issue. And they need to be validated for the trauma they personally have experienced as they reached out for help.
The group came up with the following list of strategies to end human rights violations in the mental health system:
- Letters to the editors of newspapers and legislators at all levels
- Setting up activist/advocacy support groups
- Developing a media watch application
- Reaching out to large number of people with reports of violations using e-mail alert lists
- Flash mobs at specific sites
- Speaker bureaus, speaking out at hospitals, agencies and organizations
- Producing a dramatic movie
- Involving the legal system
- Change laws so that vulnerable person seeking help are not “penalized”
- Developing an activist curriculum and beginning this process by reviewing curriculums that are already in existence (Washington Disability Rights Activist Curriculum, National Mental Health Self Help Clearinghouse Curriculum, Advocacy Curriculum, and the National Association of Peer Support Curriculum)
- Find allies outside the hospitals to witness and organize
- Using all available methods of communication
- Involving young people
- Rating candidates for their support on these issues
- Developing synergy between alternatives and activism
- Promoting activism in peer job descriptions
- Getting more involved in youth concerns, juvenile justice and foster care
- Coordinate or join with MindFreedom
Little time was left to develop an action plan. As the institute convener, I agreed to develop this document and distribute it as widely as I could, and to set up an e-mail group so we could continue our discussion over time and make some definite decisions on how to move forward. That group will be open to new members.
After the Institute, Drake Ewbank of Crystal Dimensions in Springfield, Oregon handed me a copy of the most inclusive manual on helpful mental health service provision that I have ever seen, a manual that would guide people who are providing services so that they are truly helpful, that everything they do promotes healing and that they avoid doing things that would further traumatize the person seeking help. This manual is available for $11 for people who have a lived experience of mental health issues and $15 for care providers and health care professionals. You can get your copy by e-mailing drake@efn.org or calling 541-606-6351.
This document is a scathing indictment of the mental health system. However, there are many, many people who are doing excellent work in this system, supporting people who have had mental health challenges and aiding them in their search for recovery and wellness. There are thousands of WRAP group facilitators all over the world, with more being trained every day. There are hundreds of people who are now trained to teach people to be WRAP facilitators. At any given time, there are WRAP groups going at multiple sites all over the world. Many, many clinicians and supporters are assisting people in developing their own WRAP and being there for them as they use it. There are excellent psychiatrists, psychologists, clinicians, caseworkers, family members, friends, and government workers who are supportive and doing what they can to fix the system and move us forward.
Thanks to all of them, there is lots of hope. Over time, with all of us working together, we will fix this system, or discard it and build a new one. Which will it be?
Mary Ellen Copeland, PhD, developed Wellness Recovery Action Plan (WRAP) with a group of people with lived experience who were attending a mental health recovery workshop in 1997. She is the original author of the WRAP Red Book, as well as dozens of other WRAP books and materials. She has dedicated the last 30 years of her life to learning from people who have mental health issues; discovering the simple, safe, non-invasive ways they get well, stay well, and move forward in their lives; and then sharing what she has learned with others through keynote addresses, trainings, and the development of books, curriculums, and other resources. Now that she is retired, and that, as she intended, others are continuing to share what she has learned, she continues to learn from those who have mental health issues and those who support them. She is a frequent contributor to this site.
