Coordinator: Welcome and thank you for standing by. I'd like to remind all participants that your lines have been placed in a listen-only mode until the question-and-answer session of today's conference. Today's call is also being recorded. If you have any objections, you may disconnect at this time. At this time, I would like to turn the meeting over to Ms. Ruth Montag. Ma'am, you may begin.
Ruth Montag: Hello and welcome to this virtual training teleconference, "The History of the Mental Health Consumer Movement," sponsored by the SAMHSA ADS Center also known as the SAMHSA Resource Center to Promote Acceptance, Dignity and Social Inclusion Associated with Mental Health.
SAMHSA is the lead Federal agency on mental health and substance use and is located in the U.S. Department of Health and Human Services. My name is Ruth Montag and I will be moderating the teleconference today.
If you have not been able to access the presentation files that will be used today during the presentation, please access our Web site at http://www.promoteacceptance.samhsa.gov.
On the left-hand side of the screen, select the second link down, Training Teleconferences. Once you are on the Training Teleconferences page, under the heading Current Training Teleconference, select "Read more" in the box near the top of the page to access the page where you can download the presentation files.
Our presentation today will take place during the first hour and will be followed by a 30-minute question-and-answer session. On hearing the conference operator announce your name, please proceed with your questions.
After you've asked your question, your line will be muted. The presenters will then have the opportunity to respond. These instructions are repeated on slide number 4.
If we do not get to your question, please feel free to e-mail the SAMHSA ADS Center and ask questions or follow up. The e-mail address and contact information for the Center appear on slide number 2.
We can put you in touch with the speakers, or you may contact the speakers directly using their contact information, which is provided on slide number 60. Within 24 hours of the teleconference, you will receive an e-mail request to participate in a short anonymous, online survey about today's training.
Survey results will be used to determine what resources and topic areas need to be addressed by future training events. The survey will take approximately five minutes to complete.
Before we begin, please let me say that the views expressed in this training event do not necessarily represent the views, policies, and positions of the Center for Mental Health Services, the Substance Abuse and Mental Health Services Administration, or the U.S. Department of Health and Human Services.
In addition, today's call about the history of the consumer/survivor movement is not meant to be an all-encompassing or definitive history of the movement or discuss all of the organizations and leaders that have contributed to it but instead represents the individual perspectives and experiences of the presenters. Please advance to slide number 5.
We will have three presenters today. Our first presenter will be Sally Zinman. Sally Zinman is a consultant primarily working as a consumer relations specialist with the Office of Consumer Relations, Alameda County, California Behavioral Healthcare Services.
From 1997 to 2007, Ms. Zinman was the Executive Director of the California Network of Mental Health Clients, a statewide client advocacy organization that she and other clients founded 26 years ago.
Ms. Zinman's commitment to the rights of people with mental health problems comes from her own experience in the mental health system. Working for the self-determination, freedom of choice, and empowerment of others who followed her, she has dedicated her life to protect and help others. Next slide.
Our next presenter will be Su Budd. As one of the few remaining and active founders of the Consumer/Survivor Movement, Su Budd has a unique perspective that brings the founding principles of the early days to today's movement.
Ms. Budd has expertise in movement history, organizational development, and peer/mutual support systems. She is currently the Director of the Leadership Academy sponsored by the Kansas Consumer Advisory Council for Adult Mental Health, the statewide consumer/survivor organization in Kansas. Next slide.
Our final presentation will be from Gayle Bluebird who has been active in the Consumer/Survivor Movement since the early 1970s. Ms. Bluebird is a Peer Coordinator for the Office of Technical Assistance, part of the National Association of State Mental Health Program Directors in Alexandria, Virginia.
She conducts training at hospitals all over the country, promoting dialogue and communication between providers and service recipients and the development of comfort rooms.
Most recently, Ms. Bluebird completed Paving New Ground: Peer Roles in Inpatient Settings, a guidebook on developing peer roles that is available through OTA. Please advance to slide number 8. We will now hear from our first presenter, Sally Zinman.
Sally Zinman: Thank you, Ruth, and good morning or afternoon, depending on where you're at. Why is the history of the Consumer/Survivor Movement so important? I believe that in our roots, our history is the power and vision to move forward.
For me, my roots are and have always been the beacon for the now and the future. Reviewing our history enables us to understand and rededicate ourselves to the core values of our movement.
I want to paint the landscape of the 1970s as it relates to our Consumer/Survivor Movement. In the 1960s and '70s, there were great, great social change movements that were part of our culture.
The African-American civil rights movement, women, gays, and people with physical disabilities were organizing for social change. At the same time, big State hospitals across the country were being shut down and new laws limiting involuntary commitment and its duration were being instituted.
For decades, mental patients had been denied civil liberties, suffered systemic inhumane treatment and spent lifetimes locked up in State hospitals. We were experiencing rampant denial of patient rights, and patient abuse was common and widespread.
I want you to think in terms of the difference between the landscape then and now. We were not at any tables of decision-making. We were not in the room. We were on the streets with placards.
Once we were diagnosed with a mental illness, we were considered mentally ill for life with a downward trajectory. Anecdotally, once we were being released from these large State mental hospitals, people began meeting together in groups outside the hospital without supervision or providers.
These former "patients" shared feelings of anger about their abusive treatments and the need for independent living in the community. Their peers validated their feelings.
From these isolated groups across the country, a new civil rights movement was born and it was predicated on the desire for personal freedoms and radical systemic change. It was a liberation movement like the other civil rights movements of the time.
I want to begin by saying that breaking down the history of the Consumer/Survivor Movement in the decades is an organizational tool. Our movement is much more dynamic than that.
Trends and activities overlap decades and are experienced by groups and individuals at different times. With this caveat, let's look back at the 1970s which is usually described as the beginning of the modern Consumer/Survivor Movement.
This decade was a time of finding each other and realizing that we were not alone, a time of militant groups and actions, a time of self and group education, and a time of defining our core values.
It was a time of finding and growing our voice out of the anger and hurt bred by the oppression of the mental health system. It was a time of separatism as a means of empowering ourselves.
There were certain processes that defined this decade. Because of our experiences of being controlled, we were adamant about having control over our own lives and groups. We believed totally in local control because of that.
We would take no money from the mental health system. The mental health system was considered our enemy. In fact, we were a movement, a community of volunteers. Most of us were on Social Security or general assistance.
We're very, very, very separatist. Being separatist was a way of empowering ourselves, meeting just with others who shared the same history, groups of people who have been hurt and oppressed to come together with only others who have experienced the same thing to regain their personal value and power as individuals and as groups.
And we really didn't do much major outreach that millions and millions of consumers throughout the country that were still experiencing abuses in the mental health system.
The activities at the time included extreme political militant activism, demonstrations. Always remember we were on the streets. We were not in the buildings. We were not at the table.
At the same time, we were developing and defining our values and positions. We met annually at a conference called the Conference on Human Rights and Against Psychiatric Oppression held at campgrounds and college campuses.
It was unfunded and people hitchhiked to get there. There was one magazine that was our vehicle for communication throughout the country called Madness Network News. A cover of it is the cover of this PowerPoint.
They're small as I said autonomous, locally-controlled groups mostly on the two coasts of the country but not entirely called Network Against Psychiatric Assault, Insane Liberation Front, Mental Patient Liberation Front.
You can tell these militant names are so different than the more mild names of the groups today. The most common self-description was as "a psychiatric inmate" because we felt that we were like people who had been in jail, inmates in jail.
We conducted a lot of self and group information and education because nobody had educated us or given us information about the treatment that had been done to us, so we did it for ourselves and we participated in lots and lots of support groups, which we called after the day consciousness-raising groups.
There's a landmark book published in 1978, On Our Own: Patient-Controlled Alternatives to the Mental Health System by Judi Chamberlain, and this book opened-up the eyes of professionals across the country, government people and made consumers understand that they were no longer alone.
The principles of the time were all within the context of a liberation movement for people diagnosed with mental illness. We were totally and totally against forced treatment because of the horrendous forced treatment that we had experienced.
We talked a lot about sanism, a word such as the liberation movements of the time were using, basism, sexism, but it referred to the massive stigma and discrimination that we were suffering and that we wanted to end.
We were against inhumane treatments, overmedications, forced medications, psychosurgery, seclusion and restraints, ECT. We were very, very, very anti-medical model usually defined as anti-psychiatry and we sat and talked and evolved and brainstormed the whole concept of consumer/survivor-run alternatives to the mental health system.
Consumer-run programs did not exist at the time. Funding our own programs was a totally novel idea. Overarching all, we wanted involvement in every aspect of the mental health system.
You have to remember again that we were involved with no aspect of the mental health system. Everything was done about us without us. The 1980s was a transitional time. We made major movement decisions that left many of the more purist activists behind.
We began the process of reentering the world that had so hurt us. It was a time when new opportunities began and not coincidentally, some significant-sounding endeavors ended.
There were indications that many of our goals were just beginning to be realized, a transitioning from words to deeds, conceptualization to implementation.
The processes that defined that time included mainstreaming. We began to finally outreach to the thousands and thousands of consumers that had never heard of a mental patient liberation movement.
We began centralizing. Instead of, or in addition to, the local autonomous groups, we began forming State networks. We began also something that was very, very, very controversial.
We started taking money from the mental health system. You need money to move from words to deeds, from conceptualization to implementation. You need money to open up a drop-in center. You need money to serve peers in a consistent way.
This was a very hotly-debated decision and many people left our movement when we began taking money from the mental health system, and we began collaborating, we began working with other groups.
We began reentering the world so to speak. The activities of the time include really the beginning of mental health system-funded, self-help peer support programs. These were mostly drop-in centers, but not entirely.
In 1983, On Our Own opened awas a drop-in center that was opened in Baltimore, Maryland. In 1985, the Berkeley Drop-in Center in California and the Ruby Rogers Drop-in Center in Cambridge, Massachusetts.
The Federal government community support program, which was then under NIMH, began to fund and promote consumer-run survivor programs. Thirteen consumer/survivor-run demonstration projects were funded in 1988 and some of them still exist, funded by local monies.
There's the beginning of statewide centralized consumer-run organizations. I believe the California Network of Mental Health Clients was the first in 1983. At the same time, there was a discontinuation of some of the founding activities of our movement.
Madness Network News stopped publishing and there was a decline of the more radical groups. There was a discontinuation of the Conference on Human Rights and Against Psychiatric Oppression in exactly the same year that the first National Alternatives Conference met. That was in 1985.
In fact, now there were many, many mental health system-funded trainings and conferences. It was a huge gain in rights protection and a growth of rights protection organizations, both private organizations and non-profits such as Protection Advocacy, Inc.
We really began to walk inside. We began to see social change could come from the inside as well and in addition to outside and more and more consumer/survivors were sitting on decision-making bodies.
Many of these changes began to reach their fruition in the 1990s and 2000s. Although our basic values remained the same, we rephrased them in more positive ways.
Consumer/survivor-run groups, employment, and educational opportunities began to flourish, and what's so important, the attitudes of chronicity began to change to attitudes about recovery, that people could recover.
The 2000s beganbrought an increase in all the gains of the 1990s; however, advocacy gains have created backlash and service gains almost always entail compromises.
There were external and internal threats. The Consumer/Survivor Movement itself is becoming more and more diverse and inclusive and has developed a national voice.
For me, the principles that we talk about now directly reflect those of the 1970s. They have always been my guiding light. They are the same as the earlier days. They are just expressed in a more positive way.
We talk about self-determination and choice, rights protections, ending discrimination and stigma. We talk about holistic services, addressing the needs of the whole human being, that we are not just a biological entity.
We talk about supporting self-help and peer-support programs and always and always involvement of every aspect of the mental health system, nothing about us without us, and encompassing all of the above, we talk about recovery.
The activities of the 1990s include the following. Finally, we began to be able to make a living in the social change work that we had been doing all these years. We began to have jobs in implementing our goals and our passion.
There began to be employment for consumers in the mental health system as well as self-help programs including consumer survivors in mental health management-level jobs, Offices of Consumer Affairs.
There was big, big growth in peer-run self-help programs with system funding. The Federal government funded two consumer/survivor-run technical assistance centers to provide technical assistance for consumers and self-help programs throughout the country, and that grew to three centers.
Those technical assistance centers are a long way from the days that you could list all the known consumer/survivor groups on one page of Madness Network News.
There are multiple, multiple training and learning opportunities and noticeable consumer/survivor involvement at most levels of the mental health system. In fact, now in the 1990s, consumer involvement is mandated by governments and systems.
Consumer/survivors began participating and partnering more and more with other constituency groups. There was a beginning of client-run research; research on self-help, consumer-run programs; and consumer researchers.
We began working more and more with policymakers to legislate and influence policy, and advocacy gains kept growing and growing. The concept of recovery instead of chronicity began to emerge as the vision of the 1990s.
Bill Anthony coined the term "decade of recovery" in an editorial in 1993. The activities of the 2000s really just amplified those of the 1990s with some additional activities.
There was incorporation of more and more of the incorporation of peer self-help programs into the system so there was the evolution of recovery wellness centers, of peer-support specialists that work in the system, of Medicaid-funded peer support.
We began to develop mental healthwe are developingmental health services that recognize the significance of trauma and spirituality in a person's life and address these. We are a more diverse and inclusive Consumer/Survivor Movement than those people that founded the movement in the 1970s.
We've created a National Coalition of Mental Health Consumer/Survivor Organizations, a national advocacy voice for consumer/survivors just as we have had all this time statewide advocacy voices.
However, successful inclusion in the mental health system also threatens the loss of our consumer/survivor values and there's also been, in my opinion, a backlash against advocacy gains in the guise of pushing involuntary treatments such as outpatient commitment and "leverage" treatments.
I believe that consumer/survivor leadership involvement in all levels of the mental health system has brought huge system culture change. It is evidenced all around us. In California, a Mental Health Services Act was passed, a ballot measure by the voters of California.
In it, explicitly and implicitly are the values that we talked about 35 years before, sitting around in campgroundsthat services had to be voluntary in nature, the promotion of self-help peer support programs, the involvement of consumer/survivors at all levels of the mental health system, the involvement of consumer/survivors as part of and in the training of the mental health workforce, and the promotion of recovery as a goal.
SAMHSA's National Consensus Statement on Mental Health Recovery reflects those basic consumer/survivor principles of self-determination, individualized and person-centered services, holistic, empowerment.
The professionals who promulgated the concept of recovery clearly state that it was consumers who introduced the concept of recovery, wrote about it and inspired them. And recovery instead of maintenance is so fully embraced as part of the mental health system's culture now that the President's New Freedom Commission wrote, "We envision a future when everyone with a mental illness will recover."
Consumer/survivors have initiated new genres of services. Consumer/Survivor-run programs are everywhere and peer support is an essential component of most mental health systems.
I believe that the scope of our achievements of the past is an indicator of the possibilities of the future and our day-to-day struggles from the perspective of the middle of the forest; we don't see the gains, we just see the struggle, but the gains have been enormous.
The whole landscape of the mental health system has changed and I think because of consumer involvement and leadership. I can only guess that based on this past, our achievements will be equally enormous in the future.
Also, I see around me many, many young and diverse people getting involved in our movement. They will carry the flame of the movement, of our past, and based on their experiences, redefine the future.
I want to end by quoting a statement in Reaching Across 2: Maintaining Our Roots/The Challenge of Growth; it's a manual that Howie the Harp and I edited and contributed to.
It was in 1994 and we were seeing self-help and peer support growing and changing around us as we were working on the manual, and we wrote, "We must stay true to our roots or we will defeat the purpose of our programs. Separate a tree from its roots and it will surely die. Stay connected to our roots and we will live long and prosper."
Thank you, and I want to thank Alameda County Behavioral Healthcare Services for giving me the time to prepare this presentation.
Ruth Montag: Thank you very much, Sally. We will now proceed with our second presentation and hear from Su Budd whose presentation begins on slide number 23. Please go ahead, Su. Su, go ahead and unmute your phone.
Su Budd: I'm sorry. Thank you, Ruth. History of Consumer/Survivor Professional Relationships. How were people with mental health problems viewed in the early days?
In the very beginning, there was darkness. Persons experiencing mental illness were called mental patients, mentals, clients, chronic mental patients or simply chronics.
All aspects of a patient's life were considered a treatment modality; therefore, there was no privacy in the patient's life, and professionals exerted total control.
Coercive treatment was a common occurrence. Conditions impacting mental health ex-patients and psychiatric inmates were forced treatment, overmedication, strong adverse medication side effects, restraints, prolonged seclusion, prolonged hospitalizations, months and sometimes years, and barbaric treatments such as insulin shock, electroshock, sheeting, wet packs, and lobotomy.
To be sure, there were for two of us who sought to break free, but the cost of doing so was often harsh punishment, and most times we could not escape for long before being dragged back to treatment.
Ex-patients and psychiatric inmates began to speak out against this inhumane treatment. At first, we gathered in small groups locally to gain support from each other and later to develop political action against an extremely oppressive psychiatric system.
Organizations which come to mind are Mental Patients Liberation Front, MPLF, of Boston, Massachusetts; MPLP, the Mental Patients Liberation Project of New York, New York; MPA, the Mental Patients Association of Florida; NAPA, the Network Against Psychiatric Assault of San Francisco, California; and the Social Club of New Haven, Connecticut. Next slide.
A radical caucus of the American Psychological Association acknowledged abuses in the mental health system in 1972.
Dr. Thomas Hertzberg of Northville State Hospital in Detroit, Michigan, went to that caucus in which psychologists talked about why it was the psychologists could hold national conferences to talk about mental health patients and yet ex-patients and psychiatric inmates were not going to national conferences to talk about psychiatric professionals.
Caucus members had heard that there were a few ex-patient and psychiatric inmate groups organizing on the local level, so Dr. Hertzberg decided to meet with the representatives of local ex-patient and psychiatric inmate groups.
Planning began for the first annual Conference on Human Rights and Psychiatric Oppression in 1972. Dr. Hertzberg invited representatives of local, ex-patient and psychiatric inmate groups to a planning meeting to be held in Detroit to develop a national mental health ex-patient conference to be held in 1973.
Dr. Hertzberg located me; Howie the Harp of New York, New York; Dr. Louis Frydman of Lawrence, Kansas; and others. We had a meeting in Detroit at a very nice hotel to plan what was to become the first Conference on Human Rights and Psychiatric Oppression. This conference became an annual event and was held yearly for 13 years between 1973 and 1985.
During that time, the Conference on Human Rights and Psychiatric Oppression went through several name changes as the movement grew in scope, ending as the International Conference for Human Rights and Against Psychiatric Oppression.
This conference attracted people from Canada, the Netherlands, and Britain. Throughout its history, this conference held yearly demonstrations at hospitals. Some of these demonstrations held vigils for our friends and neighbors who died in such places. How did ex-patients and psychiatric inmates fund these conferences?
During the life of the Conference on Human Rights and Psychiatric Oppression, ex-patients and psychiatric inmates had no money to organize nationally, yet the drive for companionship and the support of peers drove us to hitchhike and otherwise to beg, borrow, and pool resources to get to our national conferences.
These conferences were held in campgrounds and in university dormitories. These conferences drew from 50 to 100 people a year. The expense of the conference itself was often funded by donations from those few ex-patients and psychiatric inmates who had a little money to spare.
Many of these early conferences ran in the red. Professionals who supported ex-patients and psychiatric inmates' efforts to organize reported that they experienced negative consequences.
During the life of the Conference on Human Rights and Psychiatric Oppression, professionals that debated the ethics of assisting ex-patients and psychiatric inmates to organize and many professionals were punished severely for aiding us.
For instance, it was reported that Dr. Tom Hertzberg was fired for bringing us together. Dr. Louis Frydman experienced negative consequences which I'll explain in a moment, and later, many brave professionals who helped ex-patients and psychiatric inmates make contact with supportive persons or to independently manage ex-patient organizations simply disappeared from provider agencies.
We ex-patients were very suspicious that they too were fired. Psychiatric oppression even affected the professionals that believed in us, especially the professionals who believed in us.
The ex-patient and psychiatric inmate movement was considered dangerous for mental health clients because of perceived misinformation in the movement publications and perceived unskilled techniques used in self-help and mutual support ex-patient and psychiatric inmate-run organizations.
Inpatient literature announcing ex-patient and psychiatric inmate conferences and concerns was openly censored by provider agencies. Next slide, please.
A patients' bill of rights was passed in Kansas State legislature with the help of Dr. Louis Frydman, the Advocates for Freedom in Mental Health was formed in Lawrence, Kansas, to advocate for mental patients' rights.
This resulted in a bill of rights which passed the State legislature in 1974. The professional community was very upset about this phenomenon. They felt that their work would be made impossible to do unless legal force could be used against the patient.
For his efforts in this regard, Dr. Frydman was sued for interfering with the doctor-patient relationship. Also as a result of this, Dr. Frydman was threatened with loss of his tenure at the university where he worked.
Around this time, disenchantment with the old State hospital system was growing. The State hospital system was not working, and people did not get better in them.
Mental health services were moved into the community from distant State hospitals, and community mental health centers were created by congressional mandate. Professionals who were helpful to the movement still reported negative reactions.
In 1977, ex-patients and psychiatric inmates began to participate on mental health planning boards in local settings. Some professionals in positions of power began to realize that the ex-patients and psychiatric inmates had program development and policy ideas that might be helpful in planning innovative mental health services.
In 1972, ex-patients and psychiatric inmates began to publish articles in their own self-funded publications like Madness Network News. Later in 1979, ex-patient and psychiatric inmates' literature appeared in professional journals as these self-published articles and stories came to the attention of avant garde professional journalists, [who] then began to publish this literature.
Advocacy journals were particularly interested. The concept of recovery in mental health was born around this time. This idea started in the '70s and '80s as ex-patients' personal accounts rejected the idea that ex-patients could not get better. Next slide, please.
In 1982, for the first time, the National Institute of Mental Health, NIMH, sought ex-patient and psychiatric inmate consultants to participate in a variety of efforts.
For instance, ex-patients participated in the National Community Support Advocacy Network and in the planning of the 1982 and 1983 National Community Support Program Learning Community Conference in Washington, D.C., both sponsored by the National Institute of Mental Health.
Comments by ex-patients invited to these Learning Community Conferences were then published in the resulting monograph. A few professionals, primarily at the Federal level, recognized the courage and skill of the members of this movement.
They conceptualized members of the ex-patient and psychiatric inmates movement as consumers and not as ex-patients. Also, they, with ex-patient and psychiatric inmate input, proposed changes in mental health law, bringing into being the Community Support Model of mental health services.
Along with this, congressional law mandated consumer family representation on mental health planning boards. The International Conference on Human Rights and Psychiatric Oppression demonstrated at the American Psychiatric Association convention.
In the early 1980s, the Annual International Conference on Human Rights and Against Psychiatric Oppression followed the Annual American Psychiatric Association convention around the country picketing and demonstrating.
Some of these demonstrations were very dramatic. Some even involved civil disobedience. In response to movement activities and pressure, I was invited to participate in the National Conference on the Chronic Mental Patient in 1984 sponsored by the American Psychiatric Association Committee on the Chronically Mentally Ill, the Menninger Foundation, the National Association of State Mental Health Program Directors Support Services Committee, and the National Institute of Mental Health.
In 1985, I was invited to speak at the American Psychiatric Association's national convention in Dallas, Texas, by special invitation of the President of the American Psychiatric Association.
This presentation was entitled "A Journey through Madness" and was given as part of the President's symposium. I was the first consumer survivor ever invited in such a capacity to that convention.
There were two interesting responses to my participation. In the first case, that of the National Conference on the Chronic Mental Patient, a well-known Kansas psychiatrist, Dr. Walter Menninger of Menninger Foundation fame, sought to study me to see if and why I recovered.
In the second case, that is the presentation of the President's Symposium at the American Psychiatric Association annual convention, several psychiatrists walked out during the presentation. It was clear that they were not ready to take consumer/survivors seriously.
Consumer Satisfaction Surveys were implemented. By the late 1990s, the University of Kansas launched the Consumer Satisfaction Survey, whereby ex-patients and ex-patient and psychiatric inmate-run organizations were paid to survey their peers in mental health centers about the quality and accessibility of the services that they received. Next slide, please.
NIMH funded the first Alternatives conference in 1985 in Baltimore, Maryland, and the participants redefined their identity. Also in 1985, was the last year that the International Conference on Human Rights and Against Psychiatric Oppression was held.
It was extremely difficult for us to accept the government funding and many of us thought that doing so would co-opt the movement. The movement lost many good people as a result.
Leonard Roy Frank, for instance left. He was the author of the book The History of Shock Treatment. He was very concerned about the damage that electroshock treatment causes people.
Participants in the Alternatives conference defined their identity with regard to mental illness in many ways. The term "consumer" was chosen as a compromise to cover everyone.
Over 200 ex-patients and consumers came to the Alternatives conference. One of the stipulations of the funder was that the Alternatives conference attract broad-based consumer and ex-patient representation, including consumers that felt that they benefited from the mental health system as well as those that felt that the mental health system was stigmatizing and oppressive.
With the increase in funding, consumers no longer had to hitchhike to the conference and no longer had to go bankrupt to fund it. On scholarship, consumers could fly to the conference and could meet in high-priced hotels like the professionals do.
Two national organizations of consumers grew out of the networking after the first Alternatives conference. These were short-lived. The consumers that were satisfied with their treatment by the mental health system went on to form a national organization called the National Mental Health Consumer Association.
In 1986, the consumers that were dissatisfied with their treatment by the mental health system formed a second national organization called the National Association of Psychiatric Survivors.
They felt that they had survived the system and the term "consumer/survivor/ex-patient" or CSX was coined as a compromise to describe all people who had experienced a psychiatric diagnosis in their lives, regardless of their point of view.
In 1986, NIMH funded the production of two technical assistance manuals written by consumer survivors who wanted to help other consumer survivors to organize for advocacy and for peer support.
Some of the founding members of the International Conference for Human Rights and Against Psychiatric Oppression got a grant from the Community Support Program branch of NIMH to publish Reaching Across: Mental Health Clients Helping Each Other, a technical assistance manual written by consumer/survivors for consumer/survivors wishing to organize.
This grant was awarded to the California Network of Mental Health Clients and Boston University. Non-founding members of the movement also got a grant from the Community Support Program branch of NIMH to write another technical assistance manual from their point of view.
This grant was awarded to Project Share and the National Consumer Self-Help Clearinghouse, both of Philadelphia, Pennsylvania. The focus of the early Alternatives conference has changed over the years.
Early Alternatives conferences were in West Virginia and Ohio. The tone of our early conferences was highly political, whereas today, 24 years later, our conferences are more about skills development, training, concepts such as wellness, inclusion, the arts, recovery trauma-informed care, etc., and less about political organizing.
The concept of ex-patient died away and we became simply consumers/ survivors, although the term CSX is still sometimes used. In the late 1980s and 1990s, the first statewide consumer/survivor organizations were established.
Consumer/survivors in various States formed and managed these statewide consumer/survivor organizations, often with representation from local consumer/survivor groups. Next slide, please.
With the help of government and other grants, several consumer/survivor organizations and technical assistance centers were set up to help consumer/survivors organize.
Some of these technical assistance centers were run by consumer/survivors with expertise in organizing, and some were run by non-consumer/survivors. In the late 1990s to the present, consumer/survivors began to seek jobs in the mental health system working alongside of professionals.
Consumers as Providers training programs were established at some universities like the University of Kansas in Lawrence, Kansas. These programs were to teach consumer/survivors the skills to work within the mental health system.
The mental health centers and hospitals participated with caution. By 1998, consumer/survivors advised mental health agencies on program development and policymaking.
They demonstrated strength in helping mental health agencies, hospitals, and State departments of mental health in program development and policymaking by serving on boards of directors, advisory councils, mental health planning boards, and in paid and unpaid consultant roles.
By the late 1990s, committees at the local, State and Federal levels had consumer/survivor representation, including the Center for Mental Health Services, CMHS, of the Substance Abuse and Mental Health Services Administration, SAMHSA.
Today, this remains so, as our consultant work has extended to the Federal mental health system in Washington, DC, CMHS SAMHSA has a Consumer/Survivor Subcommittee.
This subcommittee serves to advise the advisory group to SAMHSA. There is now an emphasis in these bodies on developing more consumer/survivor-friendly, community-based programs and services so that we can live normal lives out in the community of our choice. Next slide, please.
Where we are today. Prominent consumer/survivors are becoming known as recognized authorities in the field of mental health. Consumer/survivors are getting graduate degrees from well-known universities and are becoming known as recognized authorities in their own right.
Consumer/survivors are working alongside professionals in the service delivery system and are publishing protocols for achieving recovery and hope in mental health, such as Mary Ellen Copeland's Wellness Recovery Action Plan (WRAP), Pat Deegan's work and the University of Kansas' Pathways to Recovery Study Guide.
Peer support specialist training and certification programs are more widespread and are reimbursed by States and Medicaid. Peers work in community and inpatient settings as peer specialists.
However, one point of concern is that the concept of friendship, which is so important to the healing process in mental health, will be trained out of today's certified peer support specialists just like it has been trained out of professionals because of ethical concerns regarding dual relationships.
Professionals who support the movement are in the majority now. No longer are these wonderful professionals threatened with sanctions and loss of employment because of the support they give to our movement.
Many professionals are delighted to give technical assistance to consumers/ survivors attempting to organize, and professionals rarely censor consumer/survivor literature.
Today, five national technical assistance centers exist. Three of these centers are run by consumer/survivors. These centers provide structured technical assistance to consumer/survivors wishing to organize.
Among these initiatives are a growing number of leadership academies, formed to teach leadership skills to consumer/survivors of mental health services. Funds are available to help consumer/survivors organize and to attend national conferences.
Consumer/survivors can now get funding to organize consumer/survivor organizations and initiatives, such as peer-run wellness centers, peer-run crisis centers, and a variety of other specialized programs operated by consumer/survivors.
There is also funding to get to a variety of national conferences. The number of consumer/survivor-run organizations is exploding in this country, and they are developing coalitions with other mental health consumer/survivor organizations and with other disability advocacy groups.
Consumer/survivor organizations have succeeded in acquiring expertise and credibility. Today, most professionals are talking about hope and recovery to their clients. Next slide, please.
Issues that remain. Involuntary treatment is still commonplace. Many consumer/survivors experience involuntary treatment, outpatient treatment orders, and mental health courts as traumatic.
Seclusion and restraint have not been eliminated and are also traumatic. They are just now beginning to address the issue of trauma, and it is hoped that the trauma-informed care initiative will go a long way in recognizing, understanding and addressing this problem.
Too many people with mental health problems continue to end up in jails, prisons, and on the streets. Funding issues adversely impact access to care. Today's economy, which is resulting in drastic funding cutbacks, is threatening access to traditional and non-traditional care and service opportunities.
There is still stigma in the mental health system against consumer/survivors who work within the system. Sometimes their input is not taken as seriously as that of other mental health professionals.
They are often not paid at the same rate as other providers at an equal grade level, and they are often not allowed to work full time. Consumer/survivors live nearly 25 years fewer than the rest of the population.
It is appalling that so many consumer/survivors are dying so young. Our people are dying due to diabetes, heart attacks, breathing problems, overweight, and stress.
It is my understanding that research is being done on this tragic situation, and SAMHSA has launched the Wellness 10x10 Initiative with the goal of reducing premature death by 10 years over the next 10 years.
However, consumer/survivors hope that in the next few years, that goal will be increased to a normal lifespan in less than 10 years. Electroconvulsive therapy, ECT, is still used, sometimes causing mild to severe memory loss, and is considered by many to be traumatic. Next slide, please.
Closing remarks. It is clear to me that our work as a movement is not yet finished but that we have moved mountains in the years of our existence. Keep up the good work folks.
You will carry the movement forward into the next generation. My parting advice to consumer/survivors and supporting professionals alike is that you keep talking.
Make a ruckus if you have to, but be careful to not let anger alienate those you are trying to convert. I have been a part of this movement since 1968, a little over 40 years.
I am proud of what we have accomplished and overwhelmed about what we have left to do. I will die before the work is done, and it will have to be finished by others.
May God bless those that carry on the struggle. Listen to each other's voices. We will teach each other many things that we might not otherwise know. Let us light the way to even greater successes and an even brighter future and remember we can make each others' work worth doing.
Many thanks go to the Kansas Consumer Advisory Council for Adult Mental Health, the statewide consumer/survivor organization in Kansas, for giving me the time to write this presentation. Thank you.
Ruth Montag: Thank you very much, Su. Please advance to slide number 33 for our final presentation by Gayle Bluebird.
Gayle Bluebird: Hi. I'm Gayle Bluebird. Somebody knows me as Bluebird, I think. Frequently people don't think of the arts as having a history. The title of this presentation, Arts Illustrating and Making History, is so named because of the different ways in which art was used at different points during the development of our consumer/survivor movement.
In the early stage of our movement, art was used to express outrage against psychiatric abuse. Art had no boundaries. Images were placed on signs as above. Note the words "we'd rather be mad with the truth than sane with lies."
In later years, art was used as a means to explore personal issues or to illustrate the wrongs of the mental health system in order to make it right. Many artists were passionate, talented artists. Others used art as pleasure.
Now art can be seen as making its own history as a means of self-sufficiency and as a significant healing tool in our move towards physical and emotional wellness. Next.
In the beginnings in 1970s, art was used to reflect, anger, outrage, protest, and political ideology. Art would be found on posters, newsletters, chants, songs, music, and in poetry. Next.
Madness Network News was referred to in Su and I believe in Sally's presentation. This is a cover that appeared in 1977. The artwork was done by Tanya Tempkin, a very talented artist who was also the editor of Madness Network News.
At the top of the line, you will see a byline, All the Fits That's News to Print. You can take a good look at this drawing, where women are bent in despair or standing up raging with tight fists. Many of the newsletters had different themes, but this issue was a special women's issue. Next.
This is another cover of Madness Network News. I think a lot of people don't know that in 1976, protesters staged a sleep-in protest in then-Governor Jerry Brown's office to protest deaths and abuses in the State hospitals in California.
The demonstration was a 30-day sleep-in for just protesting against forced labor and being forcibly drugged, as well as other abuses such as seclusion and restraint.
Two of the founders of the San Francisco Bay Area movement are Leonard Frank, who also is referred to standing on the immediate right, and next to him is Wade Hudson, and he was also a founder of the movement. Next.
Howie the Harp. A lot of people have heard his name. He was a hero. He's called many things, sometimes the father of our movement. Howie to the arts was our folk hero and promoter of the arts.
He described himself and others as crazy folks. He said, "Crazy folks are among the most talented people in the galaxy." Instead of diagnosing, locking-up, and treating us, the world should recognize our true worth and support our talent, creativity, and sensitivity.
He was our traditional emcee at Alternatives talent shows and one of the founders of Altered States of the Arts, a network for artists, writers, and performers. Many of us remember him getting up with his cane, always standing up and saying, "What am I doing?" and the audience would shout back, "Raising Cain."
He also carried a harmonica with him everywhere to make music, mediate conflict, and create peace. Howie the Harp. Next. Cookie Gant. Cookie called herself an artiste extraordinaire. She was a passionate advocate, an outspoken poet, and a performing artist.
She advocated for persons with physical disabilities, for shock survivors, and for gay rights, as she was an African-American lesbian, a woman before her time. She was always a unique person selling buttons, poetry books, and other wares from her wheelchairs.
She continues to make an impact in the State of Michigan as a fund was created so that people could go to conferences, one of the issues that she was passionate about.
In the 1980s, there was a transitioning. More consciousness-raising through the arts was less about protest and more about creating self-help alternatives, gaining strength, eliminating stigma and discrimination.
Theater groups sprung up all over the country. A few drop-in centers focused primarily on the arts. Many talented artistssome calling themselves mad artistsbegan to be recognized for their talent, but there was no way for them to survive economically.
Alternatives conferences began to showcase performers who displayed issues of personal, political, or social change of the mental health system. People were just beginning to write recovery stories, others about a system that had damaged them. Next.
This slide shows a collage photograph of performers that performed at various Alternatives conferences. I'm not going to name them, but perhaps you will recognize some of them. They're from all over the country. They wrote original songs, skits, or poetry illustrating mental health issues. Okay, next.
Next, Mark Davis is from Philadelphia and he calls his act "Drag with a Tag." He first appeared as Miss Altered States in Philadelphia at the Alternatives Conference, I believe in 1992. I could be wrong. He appeared on a dare.
He had the audience falling out of their chairs when he came up at first, escorted to the stage in a fur coat; then, he was dressed down in a ballroom gown, then down to the bathing suit that you see above complete with his banner, Miss Altered States.
He has continued to build on this character, but make no mistake, because as funny as Mark can be, he's serious about the messages he conveys, always factual and compelling and compassionate. He talks about the issues of HIV and AIDS and he received a Voice Award in Los Angeles this year, 2009. Next.
The Second Step Players are probably or are one of the oldest theater groups in the country. They formed in 1985 and they are the longest to survive. They are from Connecticut. They write and perform original comedy and drama about their experiences of being labeled with a mental illness.
They seek to promote recovery and community change through creativity and art, and they perform approximately 20 shows per year, mostly in the northeast.
Their skits are very funny and have been described as Saturday Night Live meets One Flew Over the Cuckoo's Nest, and the information of their Web site is on the slide so that you can go there and get additional information. Okay, and Jean Campbell, most people know her as a researcher.
She, in 1987, coordinated the first research project called the Well-Being Project which was done by and for mental health clients in California. Among the findings with 500 persons interviewed, 61% stated that creativity is essential to their well-being.
Twenty-four percent stated they lacked creativity in their lives. What we don't know or what many people don't know is that Jean is also a very talented artist. Above is her image "Alone and Waiting."
What Jean always has said, that she would probably have pursued art but she chose the path for herself that would allow her to be self-sufficient, recognizing also that we needed data to support our claims that peers could recover.
Through Jean's and others' efforts, the consumer-operated programs are an evidence-based practice. The toolkit that was developed includes a section on how people can tell their stories through art.
Sybil Noble is from Kansas City, Missouri. She is the only known mental health survivor to receive an Eli Lilly scholarship to attend art school. Her work has been exhibited in many local and national exhibits, and with her husband, she co-directs a drop-in center in Kansas City with an emphasis on the arts.
In many of Sybil's works, she depicts the failure of the mental health system, and in others, she tells the story of her inner turmoil. Once, Sybil was told that she should stop drawing morbid pictures by an art therapist, and she had her markers taken away by an art therapist, noting that she could have them back when she drew happier, sunnier pictures.
This probably wouldn't happen today but many artists remember their artwork being analyzed or placed on their hospital records. Others remember basket-weaving or making keychains as being the type of art that was offered in art therapy programs.
In the 1990s up to today, you will meet artists who are using art as a significant part of their recovery and healing. Information is being sought about how to develop different types of arts venues.
Some are finding that one of the best ways to heal from childhood trauma and sexual abuse is to use the form of poetry and songwriting. Arts projects address stigma and discrimination. Art is also being used by peer specialists providing peer support in drop-in centers and in wellness programs. Okay.
Sharon Wise lives in Washington, DC. She's an amazing artist. Many of her works are of self-portraits, different expressions, faces revealing herself and aspects of her personality.
About her work, Sharon says, "Things I can't say in words, I can say through my art. I paint in vibrant colors that reflect my culture and history of trauma and childhood abuse. While the sketches like Zyprexa Walk might be considered frivolous, the message is not light at all and can be understood by many people who are on psychiatric drugs."
The arts have the ability for us to make light of ourselves while still delivering a strong message. Sharon will be known not only as a talented visual artist but for her amazing butterfly dance performance that brings audiences to tears. She also received a National Voice Award in 2008. Okay.
Wambui Bahati. Wambui's performancesshe's from New York Cityare described as being hilariously funny while relentlessly honest. She is much sought after as a performer but is constantly faced with the challenge to make it financially when performing for mental health audiences.
Her greatest reward may be in helping others to find holistic alternatives in their journey to recovery. She was once a Broadway performer and she later created a one-woman show, Balancing Act, based on her mental health experiences.
She's recently written an enlightening memoir, called You Don't Know Crazy, that describes how she found inspiration and exhilaration out of despair.
The story of her journey is amazing. It's a book that you will not want to put down. The last chapter only makes it more compelling. She outlines what she did in hopes that others would try alternative methods of healing in addition to more traditional methods. Okay, next.
Reaching Across with the Arts, a name that was taken from the original Reaching Across mentioned by Su Budd, is a self-help guide that was published in 2000 with funds from the Center for Mental Health Services under SAMHSA.
This how-to guide includes information on starting a theater group, a newsletter, a writing group, talent shows, an art business and others. Many talented artists and their stories are featured.
While there is a need for updating the information, this guide can still serve as a valuable resource and is available on the Altered States Web site at the address listed above. Next.
Jerome Lawrence is from Atlanta, Georgia. He's probably the most nationally recognized, a very talented artist known for his works of beauty and color. He's done a series called Tulips Are People, one of which hangs in the Carter Center in Atlanta, Georgia. He was a student at Georgia State University in 1984 when he was diagnosed with schizophrenia.
He continued to study art and now years later, his work is truly amazing and spans the scope of flowers, abstracts, dancers, etc. He's probably the most-highest-paid consumer/survivor artist.
One of his paintings went for $13,000 at an auction at the Carter Center. Jerome can serve as a beacon of hope to other budding artists; our stories, our art are all marketable and can serve to educate people who know and understand little about mental illness. Okay.
Mike Skinner from New Hampshire. Mike is a risk-taker. Having lost everythinga lucrative music business, his family of five childrenhe would begin to use music as his way out.
Writing about his history of physical and sexual abuse would not be easy, but Mike pursued and is now one of the most prominent message-carriers of these issues. The lyrics of his music are ones other victims of abuse can identify with. He has a large following.
While he talks about, sings about, and writes about abuse, he is equally committed to the message of hope and spirituality. Mike has written and recorded and published three CDs of his music, and art is the primary source of his income. Okay.
Meghan Caughey is from Portland, Oregon. Meghan Caughey's transformative art evokes strong emotions when viewing it, from the very deep and painful to the light and joyful.
About her work, she states, "My life has been rather raw and hard to look at, but I have tried to make it into something that has beauty and art has done that for me." She now works as a peer wellness specialist in Oregon and incorporates art with her work. Next.
Following are special projects and partnerships, traveling exhibits, media projects, and memorials. Okay, the first of these is Pillows of Unrest. The Pillows of Unrest is an exhibit of poetry and art that's painted on pillowcases.
It's a project that anybody could do, either peer or non-peer programs. A partial descript of the project reads, "If pillows could talk, they would tell a story of our struggles." The pillowcases often reflect issues of recovery and effects of stigma or anything that the person wishes to convey.
Fulton State Hospital is the first State hospital of many that are beginning to use the pillowcase project as a special art exhibit. One hundred and fifty forensic clients painted pillowcases that were shown at the statewide consumer conference and other local venues. Okay, next.
The S.I.D.E.S. Quilting Project also is from St. Louis, Missouri, and S.I.D.E.S. is a peer wellness center that started a fabric quilt project with a theme of recovery to demonstrate to the community that we are capable, caring, and loving people.
The chosen theme was "Wings of Change"thus, the butterflies scattered throughout the quilt. The Arts Coalition states that the quilt represents to them the spirit of hope, and the group hopes to continue this work of art to help fight negative stigma in our community.
The quilts, they compare similar to the AIDS quilt. They hope to travel around to conferences around the country in order to educate new generations about wellness and recovery.
Gilberto Romero is a long-time survivor, activist, photographer, national leader who continues to do a weekly radio show called "Informas de Esperanza," which he has done for many years.
He's a member of the National Consumer/Survivor Subcommittee and has played a prominent role in mental health reform nationally and in his own home State of New Mexico.
Rather than focusing on personal recovery, he places his emphasis on healing of the community and on public health issues. He is also known for his spiritual healing, and he has often led memorial services at national conferences reminding us of the importance of spirituality in our healing, and the last slide in this series is the Cemetery Project. Next.
Cemetery Project. Next. All right. Well anyway, the Cemetery Projectwell, yeah, there it is, okay. The Cemetery Project started in Milledgeville, Georgia. It was a cemetery that was restored with beauty to honor 25,000 people who had been buried in unmarked graves at Central State Hospital since 1842.
This project was coordinated by Larry Fricks and Pat Deegan and has gone to other States where other cemeteries have had memorials and beautification projects. Their latest project is a memorial that's being created at St. Elizabeth's Hospital in Washington, DC, of which there was a groundbreaking in the spring of this past year.
In the future, it is my belief that art will be an important player in the transformation of mental health systems. Arts used by persons with trauma histories, art used to create wellness, and peer specialists trained to incorporate the arts in peer support.
My thought is that there will be arts conferences and workshops. We just recently did an all-day institute in Nebraska at the last Alternatives Conference. Some of us may take to the road. This has been a dream of mine, to have a traveling caravan to bring art to you in your communities.
In closing, it is important that we keep alive art for art's sake. Art may be therapeutic, but it should not be therapy. Art belongs to the artists. A special thank you to everyone who contributed to this presentation, the artists, and to others who helped me develop it.
And I say thank you. Following that slide is a list of resources that you can go to of the various presentations in this presentation and finally, a picture of Bluebird, my alter ego, Henrietta, and I thank you very much.
Ruth Montag: Thank you very much, Gayle. That concludes the presentation portion of our teleconference. At this time, we will have questions from the participants. As a reminder of the instructions, please refer to slide number 4.
Please dial star 1 on your telephone keypad to be placed in the queue. Remember that once your question is posed, your phone will be muted. We also have a few questions currently in e-mail too, and let's see. (Calvin), are you on the line?
Coordinator: Yes, ma'am.
Ruth Montag: Okay. Do we currently have any callers in queue to ask questions?
Coordinator: We do have a couple.
Ruth Montag: Okay, all right. Why don't we go ahead and start with the first caller?
Coordinator: Okay, one moment, please. Our first question comes from (Randy Hatch). Your line's open.
(Randy Hatch): Yes, thank you for allowing me to speak. I've been involved in cemetery project in Hawaii and I'd like to amplify on what Gayle said is that we regain our dignity and self-respect when we care for the remains of those who came before.
It's a very important and fitting aspect of memorials, and I'd like to know how many States have this kind of situation. I know quite a few, but I don't know all, and I hope to see them when the National Memorial is complete. Thank you.
Gayle Bluebird: Hi, (Randy). This is Gayle. I certainly remember knowing you from years back. I don't really have the information. I know of some of the States. I was up in Maine, and they have a memorial project.
I believe Massachusetts. I know a lot of States have been doing it, and I certainly think that this information should be available and if you go to the Web site in the resources, I'm pretty sure that you can find that information.
(Randy Hatch): Thank you.
Gayle Bluebird: And thank you (Randy) for expanding on that. I appreciate that. Thank you.
Coordinator: Our next question comes from (Jim Blaha). Your line is now open.
(Jim Blaha): Yes, thank you very much. I certainly enjoyed this hour-and-a-half presentation today. My question is to all who have listened and all who have presented.
I have I'll call it an unusual book being published in January, I call a psychological autobiography. I would like to make a e-draft copy available to anyone who would like to review it, comment on it, critique it, what have you before it goes to the publisher next month. Is it okay if I give my e-mail out?
Gayle Bluebird: Well, I'll just answer that. I just buzzed in again. I certainly think it would. I'm not sure where you wouldoh, you want to give us your e-mail address?
(Jim Blaha): Yeah, I'll give the e-mail for anybody who would be interested in receiving a free copy through the e-mail of this e-book, a psychological autobiography written by myself and a peer specialist support person from New York. And we're making it available now to get as much feedback as we can before we deliver the final draft late this month.
Gayle Bluebird: Why don't you go ahead and give us the e-mail address, and I think that we'd be very happy to learning it.
(Jim Blaha): It's J-J-B geneva, G-E-N-E-V-A, at aol.com [email@example.com].
Gayle Bluebird: Thank you very much.
(Jim Blaha): Thank you very much.
Coordinator: Our next question comes from (Vernon Montoya). Your line is now open.
(Vernon Montoya): Yes. This is (Vernon Montoya), and first I'm glad to see that Sally Zinman is there telling about the history. I've known Sally for many, many years through the history.
I have a question for Sally and Su and that is one of the things that people have said for years is that they blame the ex-patients and the survivors for the shutting down of the State hospitals and that we are the reason why we had the homeless situations occur after the State hospitals closed. Would you comment on that?
Sally Zinman: (Vernon), this is Sally and I'm glad you called in. It's wonderful to hear your voice. You've been backyou were involved in the 1970s and in fact in one of the huge State hospitals in California, Camarillo, right?
(Vernon Montoya): Yes.
Sally Zinman: Um. The problem, after the State hospitals were closed, the consumers are not responsible for not providing funds and support for community services. It was a wonderful thing that the hospitals were closed.
It was atrocious, horrible treatment that people languished in hospitals their whole life, but the funds never followed them into the community. And in my opinion, in California, it's the first time 35 years later with the Mental Health Services Act that the promise is beginning to be kept, that the funds are following people into communities so that they can lead real lives.
Coordinator: I think our next question comes from (Clarence Jordan). Your line's open.
(Clarence Jordan): Thank you and thanks to all our presenters. You did a wonderful job and I have just one question, one observation really, and that is many of our advocacy organizations have gotten into the business of being providers, so if our advocacy organizations turn providers, who's left to advocate?
Su Budd: Well, I think that it's really important that people that are not working with or within the system be supported by people outside of the system to keep us all honest. I kind of miss getting support from all the demonstrations and the advocacy work of our "more radical" people because without them, I can't be really an effective advocate, and I miss that support.
Sally Zinman: This is Sally and I think there's always risks and compromises in getting what you want, and I believe the saying that watch out, you might get what you want, we have made huge, huge gains but there have been huge, huge compromises at the same time.
And I remember when more and more organizations were becoming service organizations, sometimes people saying well, they're no longer advocating. But I do believe our movement is healthy and that there is a continuum of people that work outside the systems like Mind Freedom from Oregon that take no government money all the way to people that are working within the system, and you need people at every single level to make it work.
Coordinator: Our next question comes from (Dharma Cancer). Your line is open.
(Dharma Cancer): Hi. I just wanted to thank you for a great presentation, and could you direct us with some more information about the technical assistance centers and the leadership academy?
Su Budd: Well, technical assistance centers, there are three that are consumer-run. I am most familiar with the National Empowerment Center from Massachusetts. Sally may be able to fill in the names of the other two.
For leadership academies, the ones I'm familiar with are the West Virginia model which is a very good model for introducing people to how to work with a board, how to get issues to a board and get the board to act on those issues.
There's also the leadership academy that I run for the Kansas Consumer Advisory Council for Adult Mental Health, the statewide consumer organization in Kansas which is more broad-based, has to do with all the kinds of things that one needs to know in order to run an organization that gets funding.
That includes things like board development, grant writing, motivating yourself and others, and just a number of topics. Sally, you have anything to add?
Sally Zinman: The other one, the other consumer-run self-help technical assistance center is the National Mental Health Consumers' Self-Help Clearinghouse.
Su Budd: Oh, okay. I'm sorry.
Sally Zinman: And I'm sure SAMHSA, who is sponsoring this call, knows that there's a STAR, which is not consumer run, it's familyNAMI support, technical assistance, and resources center called STAR and the National Mental Health Association Consumer Supporter Technical Assistance Center.
Those are a lot of words, also in Washington. I think that's from the Mental Health Association. Is that correct? Or Mental Health America?
Ruth Montag: Yeah, it's now called Mental Health America, and certainly if you want to send an e-mail to the SAMHSA ADS Center, we would be happy to send you links so that you can find out more information about each of those centers.
(Dharma Cancer): Thank you.
Ruth Montag: Okay, and we now have an e-mail question that has come in from (Naomi Pinson) that is for Su and the question reads, "How can we make human rights work in the recovery movement?"
Su Budd: Oh, wow. Well, I think one of the things that's really important is toand Sally has touched on thisis to keep in touch with our roots and keep in touch with our peers.
In terms of like the peer support specialists, remember that your strengths and what you bring to your work is your experience as a consumer, and touch base with other consumers that are currently in the system to find out what is working for them and what is not working for them.
I think there's a tendency to kind of slide into the more when you're working with professionals to become more like them than like ourselves. And when that happens, then we lose the real gift that we have to give to our peers and to the system. So my advice is to keep really, really close tabs on your roots and not wither away.
Sally Zinman: This is Sally and I think the recovery movement and the human rights movement are the same. I don't think you can have recovery without human rights. You can't have human rights without recovery, so I don't see the distinction that other people do.
(Dharma Cancer): Okay.
Gayle Bluebird: This is Gayle. I just want to answer it in a third way which is one of the things that disturbs me or concerns me with peers that are being trained and peers that are working in various facilities and programs is that they don't have this information.
They don't have a sense of where they came from, where their roots were, and they're also not getting training on rights and advocacy. So in my opinion, I think there's a number of ways that we keep human rights alive and keep people being able to be as well as providers and providing counseling and all those kinds of things is that they also have a way of advocating for people and knowing what the human rights are or what the rights are is what I'm concerned about.
Ruth Montag: Okay. We have another question in the e-mail queue that we'd like to put out there from (Richard Burton): "I'm wondering when the mental health recovery movement will have their own non-profit online streaming recovery channel to disseminate the good news of recovery to anyone with computer access."
I know that speaking for the SAMHSA ADS Center, which is part of the Center for Mental Health Services Education for Social Inclusion Initiative, we absolutely are looking at using technology in constructive ways to get more of the messaging out about recovery.
Is there any of the presenters who would like to comment on that question?
Su Budd: No, not me.
Ruth Montag: Okay. Are there any more callers in queue to ask questions at this time?
Coordinator: Yes, ma'am. We do have a couple.
Ruth Montag: Okay. We have time for one or two more questions, and then we're going to need to close the question-and-answer session, so please go ahead.
Coordinator: Okay, one moment, please. (Dottie Russell), your line's open.
(Dottie Russell): Hello, thank you. This has been very, very helpful. I hope lots of people heard it and we have an opportunity to share it with lots more people. My question is, I've been working with a number of artists in Humboldt County who don't want to take drugs.
They feel like it takes something away from them and something away from their artwork, but because they're not willing to take drugs, they're not being able to qualify for disability help. Can anybody offer some suggestions?
Gayle Bluebird: It might be that a couple of us will want to answer that question, but the people do have the right to refuse medications, and I'm not sure that they can be denied benefits because they are refusing to take medications.
I just want to give that simple answer, that there is the absolute right for that and that they could or you could check with the protection and advocacy system to make sure that that's correct and to determine how to proceed with that. That's my answer. There may be somebody else that has an answer.
Sally Zinman: Yeah, this is Sally, and I'm not sure what you meant by not being able to get disability services, but in my presentation when I talked about the concern about "leveraged treatment," that's one of the kinds of things I'm talking about.
That to get this, you have to participate in treatment. To get housing and be in supportive housing, you have to participate in certain treatment, often that means medications.
So it might be the kind of thing you're talking about, and I think that's an issue that we should be dealing with and talking about. It is forced treatment, but it's a much more subtle kind.
Gayle Bluebird: Maybe you could call one of us later if you want clarification on that.
(Dottie Russell): Great. Thank you very much.
Coordinator: And our next question comes from (Colleen Garrison). Your line is open. (Colleen), your line is open.
Ruth Montag: Okay, it sounds like she must not be on the line any longer, so at this point we're going to wrap up the question-and-answer session. This concludes our training today.
We want to thank our presenters for taking time out of their busy schedules to share this information with us today. This conference has been recorded, and the audio recording and transcription will be available in early January on the SAMHSA ADS Center Web site.
If you wish to contact the presenters at a later date, please refer to their contact information located on slide number 60. Thanks again to our speakers and to all participants for joining us, and thank you in advance for completing our survey so that we can get your feedback and improve anything that you found needed improvement today. Thank you all.