November 1-4, 2001, Holiday Inn Select, Niagara Falls, NY
Thursday, November 1, 2001
7:00 - 7:15 p.m. Welcome: Ron Bassman, NARPA Board President, Albany, New York
7:15 - 8:30 p.m. International Human Rights: Opportunities for Action
Eric Rosenthal, J.D., Mental Disability Rights International, Washington, D.C.
Introduction: Laura Prescott, NARPA Board, Sarasota, Florida
Drawing on investigations in Latin America and Eastern Europe, Rosenthal will describe
patterns of discrimination and abuse documented by Mental Disability Rights International
(MDRI). He will critique the role of international human rights organizations, the United
Nations, US foreign assistance, and
privately-funded humanitarian relief efforts in responding to and perpetuating abuses
against people with mental disabilities. Rosenthal will discuss the tremendous importance
and serious limitations of existing protections under international human rights law.
Reviewing developments in the international system expected over the next few years, and
growing interest in a convention on the rights of people with disabilities, Rosenthal will
urge activists to get more involved with international advocacy.
Friday, November 2, 2001
/bigger>/bigger>8:30 - 10:00 a.m. A Celebration of the Life of Rae Unzicker
Moderators: Judi Chamberlin, National Empowerment Center
Laura Prescott, Sister Witness International
Rae Unzicker's passion for social justice, her ability to inform, engage and mentor people
has changed the landscape of options for people labeled with psychiatric disabilities. A
panel of rights activists, including Marca Bristo, Susan Stefan, Ron Bassman, Tom
Behrendt, Laura Prescott, and Judi Chamberlain, will reflect on Rae's accomplishments and
consider ways of continuing her efforts at developing cross disability alliances. And of
course, this panel will not neglect to recount the outrageous humor and irony so integral
to Rae's work.The session opens with a song followed by a short reading of "To Be A
Mental Patient" written by Rae. The panelists will share their comments and
reflections followed by an opportunity for the audience to comment using an open
microphone format. We will close the session with a song to say goodbye and thank you to
one of our great leaders and friends.
10:30 - 12:00 noon Workshops I
Competence: What Does it Mean and Why is it Important?
Bob Fleischner, J.D., Center for Public Representation
This workshop will review the various legal and clinical meanings of
"competence" and "capacity" and discuss how and why they are important
in the mental health system. Topics will include informed consent, competence to consent
to treatment, advanced directives, and competence to stand trail.
From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for
Themselves
Marca Bristo, National Council on Disability
Judi Chamberlin, National Empowerment Center
In 1998 at NARPAs annual conference in Albany N.Y., the National Council on Disability
(NCD) conducted a public hearing to take testimony on peoples experiences with mental
health services. From that testimony, NCD produced its report, Privileges to Rights:
People Labeled with Psychiatric Disabilities Speak for Themselves. The report with its
recommendations was submitted to the President of the United States and Congress. The
presenters will briefly discuss the findings of the report. The main focus of this
workshop is to gather input from people as to how and where NCD can direct further efforts
so that people labeled with psychiatric disabilities can expect to claim their full
citizenship rights. The comments and recommendation of workshop participants will be
utilized in realizing the goals of the original report.
Why the Psychiatric Survivor Movement Ought to Care About Fair Housing Protections
(Rights and Legal Strategies)
Michael Allen, J.D., Bazelon Center for Mental Health Law
David Popiel, J.D., Community Health Law Project
Having a psychiatric disability (or a label) is often associated with being very poor and
having limited housing options. An entire "secondary housing market," comprising
group homes and other congregate living arrangements which has grown up in part because
the mainstream housing market has been so unresponsive to consumers and survivors. We aim
to tackle three critical questions facing poor people with disabilities:
I. What are the housing implications of the Supreme Courts Olmstead decision, and what
opportunities exist for advocates?
II. Can the reasonable accommodation provision of the Fair Housing Act be used to overcome
landlord policies that exclude poor people with disabilities (e.g., No Section 8, minimum
income, No co-signers and credit and landlord reference standards) and get more people
into the mainstream rental market?
How have recent court decisions under the Fair Housing Act helped or hurt people with
psychiatric and other disabilities?
Biopsychiatric Ideology as an Impediment to Recovery
Loren Mosher, M.D., Soteria Associates
The currently fashionable myths explaining the "causes" of madness are a
powerful foe to the development of hope for those designated as "mentally ill".
If madness is construed as a genetically determined, biochemically mediated, "brain
disease" where is the place for self-help, empowerment, and recovery in this
scenario? Until this ideology is confronted on both an intellectual and practical level,
concern for the wishes of system users will remain a sop tossed by those who have created
this zeitgeist psychiatry, NAMI and the drug industry. A 30+-year veteran of these
ideological wars will facilitate a discussion focused on developing a strategy to deal
with this biopsychiatric religion.
The New York Shock War: Report from the Front Lines
Dennis B. Feld, J.D., and Kim L. Darrow, J.D.
Electroshock treatment has been heavily promoted in recent years by the American
psychiatric establishment. Although the procedure itself remains highly controversial, and
the adequacy of informed consent protocols is widely questioned, electroshock not only
continues to be widely used; in some jurisdictions, such as New York State, it is
increasingly being forced upon individuals over their objections and the objections of
their families. This workshop will examine several New York cases in which individuals
have attempted to prevent or stop the involuntary administration of electroshock
treatment.
Advocacy 101
Yvette Sangster, Advocacy Unlimited, Inc.
The founder and first Executive Director of Advocacy Unlimited, Yvette Sangster, will
present a workshop on the basics of a subject that she knows very well advocacy. Yvette
has helped Advocacy Unlimited to become a nationally recognized model for advocacy
education and activism within the mental health system. As a consultant, she has presented
workshops on a wide variety of topics related to advocacy, including personal empowerment
strategies, consumer education, systems redesign, advocacy program development,
legislative advocacy, coalition-building, and network development.
Luncheon Keynote
In Our Own Voice: African American Stories of Oppression, Survival and Recovery in Mental
Health Systems
Vanessa Jackson, Healing Circles, Inc., Atlanta, Georgia
Introduction: Celia Brown, NARPA Board, Bronx, New York
Vanessa Jackson, author of In Our Own Voice: African-American Stories of Oppression,
Survival and Recovery, will explore the value of history and narratives as a tool for
empowerment and healing for psychiatric consumers/survivors/ex-patients. The history of a
people is generally told from the perspective of the dominant group, which is invested in
obscuring its violations and brutality. It is an act of extreme courage and resistance for
historically marginalized individuals and groups to honor our truths and our history by
passing those stories on to others. Ms. Jackson will discuss the healing potential of
moving through the pain of telling our own stories and the gift that we offer to others
when we invite them into the circle to share their stories.
1:30 - 3:00 p.m . Workshops II
Restraint: New Rules, New Advocacy Opportunities
Bob Fleischner, J.D., Center for Public Representation
Congress and the Department of Health and Human Services have established new federal
rules for restraint in a variety of mental health and medical settings. This workshop will
explain the federal rules, describe the roles of the Center for Medicaid and Medicare
Services (HCFA) and the protection and advocacy programs in enforcing the regulations, and
suggest strategies to reform restraint practices at the state level.
Involuntary Outpatient Commitment in New York After 2 Years
Kim L. Darrow, J.D.
Ellen Lawson, J.D., Neighborhood Legal Services
Aileen McNamara, J.D., New York Mental Hygiene Legal Service
In 1999, the New York State Legislature enacted an involuntary outpatient commitment (IOC)
law, known as "Kendra's Law". This workshop will examine the predominant
practices and trends in the operation of the law so far, including disparate approaches in
different areas of the state, as well as case law developments, including constitutional
challenges to key features of the statute.
Exorcising the Demons of Normality Creatively
Anne Feeney and Chris Chandler, Activists and Singers/Songwriters
Chris Chandler has represented three cities in the National Poetry Slam and logged almost
a million miles on the thin highways of fat America, telling the stories of the
disenfranchised with insight, humor and energy. His partner, longtime activist Anne
Feeney, is a cultural worker in the labor, economic justice, disability rights and human
rights movements. Both believe deeply in the power of art visual, musical, spoken word,
puppets, cartoons to effect change and challenge the "demons of normality."
Peer Support and a Socio-Political View of Trauma and Abuse
Shery Mead, M.S.W., Shery Mead Consulting
Lorae Boisvert, Granite State Monarchs
Since peer support programs, by definition, have a different view and different response
to mental health issues in general, it is entirely appropriate that they should help
de-construct the pathology model and, instead, help people re-construct the meaning abuse
has had in their lives. Perhaps anger will need less "management" and depression
can be re-defined as oppression. By providing both non-assessment based
"witnessing," and advocacy, peer programs are in the unique position to
"name" the abuse rather than to further pathologize the victim.
The Challenge of Implementing a PACE (Recovery) Philosophy in the Public Mental Health
System
Laurie Ahern, National Empowerment Center
Daniel Fisher, M.D., Ph.D., National Empowerment Center
Many public mental health systems give lip service to a recovery based approach. However,
in reality, full recovery, which is characterized by independence from the Mental Health
System, conflicts with the covert mission of the mental health system which is social
control.
The PAIMI Project, Year One and Beyond
Susan Aranoff, J.D., Connecticut Legal Rights Project
Laura Ziegler
Bill Stewart, former director of Kentucky P&As Mental Health Unit
Judi Chamberlin, National Empowerment Center
At the 2000 NARPA Conference, the Board of Directors voted to support an initiative to
design and test ways to meaningfully and objectively assess efficacy of Protection and
Advocacy for Individuals with Mental Illness (PAIMI) programs. This workshop will begin
with an update on that effort, and explain why it was undertaken. The panelists have
worked for PAIMI programs (as executive director, staff attorney, and paralegal) or been
part of their governance. The discussion will include: how to tell if your P & A is
providing quality legal services; conduct your own investigation; obstacles to effective
advocacy and governance; and how one exemplary program works. We hope to both acknowledge
existing deficits in PAIMI and explore possibilities for constructive change.
3:30 - 5:00 p.m. Workshops III
Mental Health Courts
Michael Allen, J.D., Bazelon Center for Mental Health Law
Peter Nimkoff, J.D., Advocacy Center for Persons with Disabilities
Peter Nimkoff will open with a Floridian's front-line perspective on those who have a
mental illness and no money, and are criminally accused. Michael Allen will speak about
(1) trends in national mental-health courts and treatment, citing Seattle and Alaska, (2)
issues concerning current research, and (3) lessons learned in kindergarten about earlier
intervention. Ample time will be allowed for questions and dialogue.
Dancing With Power: The Art of Leadership in Social Change
Vanessa Jackson, Healing Circles, Inc.
Dancing with Power is an interactive workshop, which explores the challenges and
opportunities of leadership in social change movements. The workshop will provide an
overview of the three aspects of power, internalized oppression and the art of asking for
help. There will be an opportunity for small group dialogue and support in developing
individual leadership plans. Our movement cannot thrive without conscious leaders and a
process for developing new and diverse leaders. Participants are encouraged to share their
wisdom and strategies to help us expand the leadership pool in our organizations. This
workshop is great for established and emerging leaders.
Subversive Spirituality: Why Mad Pride Yanks at the Historic Roots of Psychiatry
Phil Schulman and David Oaks, Support Coalition International
Heal normality, naturally! Begin with a Mad Pride tour of the historic roots of
psychiatry: Yes, mystics were one of psychiatry's first targets, but why? If psychiatry's
victims and critics are "heretics," then exactly what "religion" was
psychiatry created to defend? Next, participate in a strategy session about how personal
spirituality and alternatives to psychiatry are still targeted today. Why have psychiatric
survivors always remained a threat to the "dominant delusion"? Lets figure out
together what effective actions can be taken. Learn how to be in charge of creating a
personal spirituality that can reduce or eliminate dependency on psychiatry.
Voluntary Should Mean Voluntary: Why Involuntary Outpatient Commitment (Assisted
Community Treatment) is Inconsistent with the Olmstead Decision
Kathie Zatkin, M.S.W., J.D., Alameda County Network of Mental Health Clients
Olmstead v. L.C. was a 1999 Supreme Court decision emphasizing community
integration, discrimination, and patient/client choice. Proponents of involuntary
outpatient commitment claim that the denials of liberty, freedom, and dignity inherent in
assisted outpatient treatment are compatible with Olmstead. NAMI is working hard to see
that Involuntary Outpatient Commitment (IOC) is made part of States Olmstead plans. In CA,
IOC proponents draft, introduce, amend and reintroduce legislation that weakens due
process. So-called findings are incorporated into statute and the concept of voluntariness
is rendered meaningless. From a rights perspective, the language of Olmstead is not
entirely positive. We will use Olmstead to interactively explore the use of language and
the dangers that lurk when policy makers and others are given carte blanche to re-define
words and phrases to suit their agenda. The goal of the workshop is to develop strategies
to demonstrate that although outpatient commitment does occur outside of an institution,
the terms of the commitment are the antithesis of Olmstead/ADA.
Documenting the History of Our Movement: Oral Histories and Archives
Moderator: Darby Penney, Historical Projects, New York State Office of Mental Health
Presenters: Oryx Cohen, Support Coalition International Oral History Project
Steven Periard, Consumer/Survivor/Ex-patient Oral History Project
Terry Strecker, Consumer/Survivor/Ex-patient Oral History Project
The available historical records concerning psychiatry are almost exclusively from the
perspective of the system. This workshop will discuss the importance of documenting the
stories of individuals who have experienced the system, and the history of organizations
working for the human and civil rights of these individuals, as a way to begin to balance
the historical record. Darby Penney will present information on how organizations can
create their own historical archives. Oryx Cohen will discuss Support Coalition
Internationals (SCI) Oral History Project, which has a web based component; Steven Periard
will discuss New Yorks C/S/X Oral History Project, which places oral histories in the
State Archives. Film clips from SCIs interviews will be shown, and Terry Strecker will
present his film, Safer in the Street, drawn from oral history interviews.
The Pretextual Nature of Psychiatric Evaluation
William Brooks, J.D., Mental Disability Law Clinic, Touro Law Center
Psychiatrists simply do not want to be governed by legal requirements. Accordingly they
will tailor their clinical assessments to conform to the law and when possible, tailor the
law to their clinical choices. This workshop will examine the pretextual nature of
psychiatric evaluations and address legal strategies to challenge this practice.
7:30 - 9:30 p.m. Friday Evening Oral History Open Forum
Facilitator: Darby Penney, Historical Projects, NY State Office of Mental Health
Collecting oral histories of peoples experiences in the mental health system is an
important way to document individual human rights abuses as well as systemic problems.
Oral histories can also serve to document the history of the consumer/survivor/ex-patient
(c/s/x) movement. Many c/s/x report that giving an oral history can be a cathartic and
empowering experience. This open forum will provide c/s/x's with the opportunity to
present their oral histories before a group; for those who wish, their oral history can be
audiotaped or videotaped. Because of time limitations, people are asked to limit their
presentations to 15 minutes.
Saturday, November 3, 2001
/bigger>/bigger>Morning Keynote
8:30 - 10:00 a.m. Two Perspectives on Activism
Lisa F. Daniels, Reading, Massachusetts
Katherine Hodges, Mad Lib, Chicago, Illinois
Introduction: Laurie Ahern, NARPA Board, Lawrence, Massachusetts
Lisa's illustrated presentation will document the Americans with Disabilities Act as a
"frontier in history." She will discuss her experiences in researching and
educating about the ADA and the issues surrounding equality for people with disabilities.
Katherine will discuss how her experiences with psychiatry convinced her of the importance
of involving younger people and outpatients in the struggle to transform or resist the
mental health system. She will encourage creative ways to challenge coercive, medical
model psychiatry, and share ideas to develop theory and practice linking the psychiatric
consumer/survivor movement to other movements for social change.
10:30 - Noon Workshops IV
The Mutual Recovery Paradigm: A Means of Personal and Societal Transformation
Cheryl Stevens, M.D., Director, Office of Consumer/Survivor/Ex-Patient Relations,
Department of Mental Health, Western Massachusetts
This workshop will explore the mutually reinforcing relationship between spirituality
(those intangibles that create meaning in ones life) and recovery from extreme states. We
will explore the healing nature of fostering relationships with the body/mind, other
individuals, an Absolute, and ones surroundings to enhance well being. We will first
consider the tragic nature of the psychiatric odyssey in the latter half of the twentieth
century. Then participants will be invited to consider the nature of mental illness as no
more pathological than pregnancy, and the impact that this paradigm shift has on people in
distress, those who love us and work with us and on society at large at it struggles with
multicultural inclusion. In the dance of mutual recovery or mutual growth, we care for
ourselves with compassion in times of suffering and trust in the recovery process so we
can better listen to people in extreme states.
Experience has shown that the psyche knows when and what to do if given the space and the
grace in which to do it. Listening can be the technology of transformation that allows
some of our most talented and vulnerable citizens to teach us how to embrace our
sensitivities in an often-insensitive world. As heart speaks to heart the twenty-first
century closes a painful (and costly) chapter in excluding people with cognitive,
affective, perceptual and behavioral differences as we all have something to learn from
one another.
Durable Powers of Attorney: Shifting the Paradigm from "Best Interest"
to "Substituted Judgement;" What DPOAs Are, How They Work, and How
to Enforce Them
Xenia S. Williams, DPOA Agent
Beth A. Danon, J.D., Vermont Protection & Advocacy
The presenters will discuss the use of Durable Powers of Attorney for Health Care in
psychiatric settings. The discussion will center on what DPOAs are and how they can be
used to effectuate real treatment choices in involuntary treatment settings wherein the
patient is treated as if they lack capacity to make their own treatment choices. They also
will explore how DPOAs can be used to shift the existing paradigm of treating psychiatric
patients under the "best interest" model to the "substituted judgment"
model. Finally, they will offer suggestions on how to enforce a DPOA when the provider
refuses to honor it. Materials shall consist of copies of the pleadings and settlement
agreement of a case the presenters litigated, R.R. and Xenia Williams v. VT State Hospital
et al., wherein they achieved a settlement that included damages and real protections for
the patient, including but not limited to, ward rights, medication preferences, records
access, and discharge planning.
International Perspectives on Human Rights Advocacy
Eric Rosenthal, J.D., Mental Disability Rights International
Judi Chamberlin, National Empowerment Center
Activists from the United States, Hungary, Russia, Lithuania and Kosovo
This workshop will bring together a panel of activists from the United States, Hungary,
Russia, Lithuania and Kosovo to discuss strategies that have proven effective in promoting
human rights, as well as common barriers to effective advocacy. In addition to learning
from the experiences within other countries, participants will discuss how international
networks can be established to promote improved exchange of information and collaboration
across countries. Workshop participants will also discuss the role of psychiatric
survivors and other disability rights activists in international organizations and at the
United Nations. We will use the workshop to formulate a strategy of action to promote
international human rights law and the development of policies that are more responsive to
the concerns of people with disabilities.
Pursuing an Activist Agenda at a Mental Health Agency: An Assessment
Ken Schlosser, M.S.W., Advocates, Framingham, Massachusetts
For over five years, Ken Schlosser, as a consumer/ practitioner and clinical manager and
Pat Deegan, as a consumer activist consultant, have sought in a range of ways to challenge
and change the practices of a large mental health residential division in a nonprofit
agency in Massachusetts. Their efforts have been primarily, though not exclusively,
focused on staff and management. It has been a struggle with some surprising achievements
and significant disappointments. The work has included an anti-mentalist task force;
anti-mentalist events; a consumer practitioner support group; a pilot for organized yearly
evaluations of staff by clients; a series of performance standards for staff that push
empowerment, respect and choice at a high and nontraditional level; and an attempt to
establish a full time consumer advocate with a job description that establishes more
autonomy and power than is traditionally the case. The effort has raised useful questions:
1) Are mental health agencies viable spaces to push an activist agenda? 2) Should the
survivor movement make more efforts to engage the many closeted consumer-practitioners
that staff mental health programs and can they partner effectively with clients? 3) How
far can relatively progressive nonconsumer practitioners be pushed to more emancipatory
practices; what draws them to empowerment and anti-mentalism and what holds them back? 4)
Are there ways to counsel and support clients in a traditional setting that are more
reflective of our values 5) Are there changes that can be promoted in the culture and
decision-making patterns of mental health agencies that make a difference in clients
capabilities to be self-determining. A description and assessment of these efforts will be
provided with the hope that they are relevant for other struggles and raise useful general
questions for movement strategy.
The Human Rights Authority: Illinois Guardianship and Advocacy Commission
Bruce Berry and Susan White, R.N., M.S.N., Illinois Guardianship and Advocacy
Commission
The Human Rights Authority is a state-funded, citizen advocacy program that protects the
rights of persons with disabilities. Eligible persons include individuals with mental
illness and/or developmental disabilities, as well as persons with mental and physical
impairments associated with aging. The Human Rights Authority is a model advocacy program
that includes consumers, concerned citizens, families/guardians and service providers. The
presentation will discuss the types of rights issues that the Human Rights Authority
investigates and how the process can benefit people with disabilities and their
families/guardians. Sample case studies and a review of the investigative process will be
discussed. The presentation will conclude with a description of how the Human Rights
Authority can help promote positive changes in the system which provides services to
people with disabilities.
Recent Developments in Mental Health Law
Susan Stefan, J.D., Center for Public Representation
This presentation summarizes significant recent developments in mental health law,
including the Americans with Disabilities Act.
Luncheon Keynote
A European Perspective on Human Rights
Gabor Gombos, Voice of Soul, Budapest, Hungary
Introduction: Judi Chamberlin, NARPA Secretary, Lawrence, Massachusetts
Throughout the world, people with mental retardation, elders with dementia, and people of
all ages who suffer from psychological illnesses, from depression to schizophrenia, are
regularly abandoned to a life of discrimination. They are often locked away in insane
asylums where degrading conditions include pervasive inactivity, filthy spaces, and the
use of physical restraints, including confinement to cages. They are denied adequate
privacy, medical and dental care, food, water, clothing, blankets, and heat;
rehabilitation and reintegration into society are rarely the goals of their treatment,
medications are chronically overused and misused, and there is almost a complete failure
to provide informed consent for treatment and experimentation. The chronic shortage of
resources includes a serious lack of trained staff, and few avenues of complaint for
violations against this most vulnerable and marginalized segment of society. Gabor Gombos
knows these conditions all too well. Between 1977 and 1990 he was confined four times to
psychiatric wards in Hungarian hospitals. He emerged determined to overhaul psychiatric
care, first in his country and then across Europe. To this end, Gombos cofounded the first
NGO active in Hungarian mental health issues (EGISZ, the National Family Association of
the Mentally Ill) in 1993, and the following year, cofounded Voice of Soul, Hungarys first
NGO for ex-users and survivors of mental health facilities, where he still serves as chair
of the board. Gombos is also a member of the board of directors of the Users, Ex-users,
and Survivors of the Psychiatry Movement in Europe, and the European Network on Constraint
and Collaboration in Psychiatry, and is on the editorial board of Out Loud. He is
cofounder of the Hungarian Mental Health Interest Forum. Gabor Gomboss tireless work on
behalf of people with mental illness has helped end the previous damaging and derogatory
practices of that time and brought the human potential of those with mental disabilities
into the light at last.
1:30 - 3:00 p.m. Workshops V
Minimizing Symptoms from Neuroleptic Damage
Larry Plumlee, M.D., National Coalition for the Chemically Injured
Sonja Kjaer, Tardive Dyskinesia-Tardive Dystonia National Association
Persons suffering tardive dyskinesias and tardive dystonias (TD) often experience
worsening of nervous system symptoms when exposed to common toxic chemicals in low
concentrations, such as occur in tobacco smoke, pesticide residues, solvents, new carpet,
perfume and food additives. Participants will have an opportunity to share such
experiences. Milder forms of neuroleptic damage cause symptoms such as difficulty
concentrating, lassitude, dizziness, fatigue, excitability, and/or muscle aches, after
exposure to common chemicals. Taking control of one's environment can eliminate or
minimize these symptoms, and optimize health and intelligence.
What About the Women? Questionable Protections
Laura Prescott, Sister Witness International
During the period of psychiatric deinstitutionalization, there has been a 273% increase in
the number of women detained in US jails and a 110% increase in the number of adolescent
girls detained, most of whom are poor people of color. Women in institutions all over the
world face gross violations of their human rights, epidemic rates of violence, loss of
child custody, right to marry and bear children and yet gender and culturally-specific
concerns are often seen as 'secondary' 'specialty' issues pertaining to a 'sub-population'
of people rather than the central crux of human rights discussions.
This workshop underscores the need women to occupy a central place in all human rights
discussions if we are to work toward achieving full citizenship. The facilitator will also
address the ways violence against women is re-enacted when some of the following
gender-specific issues are not addressed in policy and practice: the right to marry,
reproduce, maintain child custody, differential female toxicity levels in response to
medication, increasing use of ECT on pregnant and older women; inadequate protections from
sexual assault within institutions.
Discrimination or Stigma: Which Should We Be Fighting?
Judi Chamberlin, National Empowerment Center
"Stigma" will not be overcome by public relations campaigns or by attempts to
give people more positive feelings about those labeled "mentally ill."
Discrimination against labeled people is real and is the principal cause of stigma.
Therefore, only campaigns promoting equal rights and justice will have a real and
meaningful effect in overcoming stigma.
Discrimination against people labeled mentally ill takes many forms: laws that provide for
involuntary treatment, practices restricting employment opportunities, and the like. In
addition, the pervasive media images of people with mental illness and dangerous and
unpredictable create a climate in which it becomes increasingly difficult for people known
to have psychiatric diagnoses to pursue the ordinary things in life: living where one
chooses, obtaining an education, maintaining a career, and so forth.
This presentation will discuss the struggle for equal justice and basic human rights that
has been led by psychiatric survivors/users/consumers in many parts of the world. It will
describe our analysis of what is needed to insure that a diagnosis of mental illness does
not condemn people to second class citizenship.
The Qualified Immunity Defense in Section 1983 Litigation
William Brooks, J.D., Mental Disability Law Clinic, Touro Law Center
The workshop will first address the legal standards governing qualified immunity defense.
It will then focus on the application of the objective reasonableness prong to claims by
institutionalized individuals labeled mentally ill.
Emergency Rooms
Susan Stefan, J.D., Center for Public Representation
Peter Stastny, M.D., Albert Einstein College of Medicine
This workshop will be dedicated to brainstorming possible solutions to specific problems
related to the treatment people receive when they go to emergency rooms for help with
emotional or psychiatric crises. We will outline four or five major issues and explain why
there is virtually no litigation against emergency rooms in the psychiatric context. We
will discuss Scherer v. Waterbury Hospital, the single ADA case involving emergency
rooms so far, and examine whether it can be duplicated in other states. Dr. Statsny will
outline his experience with emergency rooms in New York, especially Bellevue Hospital.
3:30 - 4:30 p.m. Membership Meeting
Saturday Evening Discussion
7:30 - 9:30 p.m. Legal Advocacy: An Open Dialogue about Serious Limitations and Need
for Bolder Approaches
Facilitated by Peter Stastny, M.D., Albert Einstein College of Medicine, and
Tom Behrendt, J.D., Connecticut Legal Rights Project
We need to talk about developing bolder strategies to confront the sources and language of
psychiatric mystification and power. How can we best synergize and use the expertise of
lawyers and lay advocates in collaboration with allies among mental health professionals,
psychiatric survivors and family members to address
political/psychiatric injustices.
We invite and encourage everyone to attend and engage in discussion with Michael Allen,
J.D., Ira Burnim, J.D., Dennis Feld, J.D., Kim Darrow, J.D., Susan Stefan, J.D., Tom
Behrendt, J.D., Emmett Dwyer, J.D., Kathie Zatkin, J.D., Beth Danon, J.D., Judi
Chamberlin, Laurie Ahern, Gabor Gombos, Dan Fisher, Laura Prescott, Harvey Rosenthal, Anne
Krauss, David Oaks, Celia Brown, Ron Bassman, Darby Penney, Don Weitz, Laura Ziegler, Ken
Barney and others.
Sunday, November 4
/bigger>/bigger>8:30 - 10:00 a.m. Workshops VI
Perspectives from African-American Women Survivors: Using Advocacy to Fight Stigma
& Discrimination for Ourselves
Jackie McKinney, National People of Color Consumer/Survivor Network
Celia Brown, Director of Peer Specialist Services, NARPA Board Member
This workshop will address how advocacy, choice, and rights are a part of our healing
process and present strategies to combat discrimination faced by African-American
consumer/survivors and people of color.
The presenters will offer perspectives and dialogue on (1) Barriers for African-Americans
exercising their human rights; (2) Finding your voice through the maze of mental health,
substance abuse and criminal justice systems; (3) Activism as a tool for individual
empowerment; (4) Leadership Development; (5) Self-help strategies; and (5) Community
organizing and outreach.
Research on Advance Directives
Peter Stastny, M.D., Albert Einstein College of Medicine
Michaela Amering, M.D., University of Vienna
We would like to review the research that has been reported pertaining to the issue of
advance directives in mental health. This is a relatively small area and we would like to
provide the example of a study we conducted with mental health professionals regarding
their preferences for future treatment. Considering all the research that is being
conducted on disempowering interventions, such as AOT, PACT, the experience of coercion,
etc., we want to discuss what kind of research might be more conducive to understanding
the choices and decisions that service users are making regarding their mental health
treatment and recovery strategies.
Grassroots and Legislative Advocacy
Harvey Rosenthal, New York Association of Psychiatric Rehabilitation Services
Harvey will share a variety of lessons learned from a decade of helping to organize local,
state and national grassroots advocacy efforts, including opposing forced treatment
initiatives and supporting proposals for community mental health services funding (the
Community Reinvestment Act), work incentives legislation (the Medicaid Buy-In), the MTA
Half Fare Fairness Act, etc.
The ALMA Project: Empowering Mothers during Pregnancy, Birth and After
Sue Jarboe, Peer Networking Group, Doulas of North America
This workshop will:
- give an overview of the ALMA project, a new peer run initiative that provides support
and advocacy to Moms who are consumers, survivors, ex-patients. We also provide doula
support during pregnancy, birth and postpartum.
- provide factual information and practical ways to take control and empower yourself when
dealing with the obstetric and psychiatric systems
- create an opportunity for sharing our stories and really listening to each other to
continue our healing.
Four Innovative Projects on Advocacy & Empowerment in QuÈbec
CÈline Cyr, AGIDD-SMQ
In this workshop, you will learn about four different on-going projects that are
empowering survivors/consumers. These endeavors all have in common that users are involved
in different ways: from taking the lead to being full-fledged participants. I am
personally involved in two of these innovations, and remain informed about the others
through exchanges with the originators and participants. The fact that the four
initiatives involve activists from all regions of QuÈbec illustrates a strong commitment
and united voice.
Update on Implementation of Olmstead Around the USA
Ira Burnim, J.D., Bazelon Center for Mental Health Law
Ira Burnim will be discussing the findings from surveys and informal monitoring of
Olmstead implementation, as well as relevant legal and political developments.
10:30 - Noon Workshops VII
Let's Argue: A Value Exchange
George Ebert, Mental Patients Liberation Alliance
Issues of peoples choices and coercive psychiatric treatment should be of concern. This
workshop provides a forum for participants to explore, to be challenged, and maybe
liberated from traditional perceptions.
Solitary Confinement: How to Escape Legally
Emmett Dwyer, J.D., Advocacy Unlimited
If a prison inmate "misbehaves" he/she may be placed in solitary confinement for
periods of time ranging from several days, weeks, or months to several years. A rising
percentage of prison inmates have a DSM diagnosis, and placing them in solitary
confinement for several months may be detrimental to their well being, yet this is a
common practice in many states. Furthermore, the very behavior which the prison
authorities characterize as misbehavior may be little more than behavior which is
consistent with the person's diagnosis; for example, if a person attempts suicide by
cutting their wrist, they may be charged with possession of a weapon and given several
months in solitary confinement.
This workshop will explain administrative appeals that can be utilized to review the
decision to place an individual in solitary confinement and it will discuss the
Constitutional standards that prison authorities must use when deciding to place a person
in solitary confinement. The objective of this workshop is to teach workshop participants
how to file an administrative appeal that might free someone from solitary confinement,
and expunge their disciplinary record so that they present themselves as suitable
candidates when/if they appear before the parole board.
Evolution of a Drop-In Center: Overcoming the Obstacles
Ellen Lawson, J.D., and Karen Welch, J.D., Neighborhood Legal Services,
Jack Guastaferro, Restoration Society, Inc.
This workshop will focus on the practical, political, and legal aspects of opening Harbor
House, a drop-in center in Buffalo, New York. Harbor House is run by a staff of mental
health survivors and is a resource for adults who struggle with mental illness and
homelessness. Harbor House was the subject of a controversial lawsuit in Buffalo when the
Buffalo Common Council, responding to community animus against persons with mental
illnesses, used zoning laws to prevent it from opening.
Jack Guastaferro, the Executive Director of Restoration Society, Inc., which runs the
drop-in center, will talk about the practical and political aspects of opening the drop-in
center. He will discuss navigating through zoning procedures that are often meant to
restrict certain groups of people within areas of the city.
Ellen Lawson and Karen Welch will discuss Restoration Society, Inc., et. al. v. City of
Buffalo. Legal issues, including the Americans with Disabilities Act, will be
discussed. Legal strategies for combating adverse zoning decisions will also be discussed.
The ADA Under Attack: Life After University of Alabama v. Garrett
Ira Burnim, J.D., Bazelon Center for Mental Health Law
Ira Burnim will be discussing the legal challenges that have been raised to requiring
states to comply with the ADA, and the possibility that, under the banner of states'
rights, much of Title II of the ADA (the sections that apply to state and local
government) may be declared unconstitutional.
* Workshops subject to change.
Brief biographies of presenters
More on NARPA 2001 logistics, speakers, and presentations
Schedule: summary of workshops & presentations - with hyperlinks