WHO/WAPR consumers' views
Milan June 2005

Sylvia Caras, PhD

Ciao. I’m delighted to be with you, my first visit to Milan. I live in California, near San Francisco. In addition to what you just heard, here’s my consumer credential: I have four diagnoses, have been in six hospitals, three times against my will; I’ve been handcuffed, electroshocked and chemically restrained. For me, the path was finding others, getting and giving support, and then turning from victim to advocate. I’ve been invited to talk here about organizing in the United States, and to comment on the report from the World Health Organization report which we have just heard.

I’ve prepared some general remarks and then will make some specific comments about WHO’s work. And I’ve put links to a few resources and these remarks on the web for you at peoplewho.org. Select the WAPR link.

I’ll start with 90 seconds of history.

In the twentieth century, as some societies moved from manufacturing to service, in the developed world the self help movement and the human rights movement parented the mental patient movement. This new movement inherited the self-help principles of volunteering, mutuality, valuing the experiential, and deflating professional privilege, along with the civil rights focus of other disability rights, gay rights, and women's movement groups and was nurtured by the politics of empowerment in an increasingly self-help oriented society.

In the 60's, the mental patient movement challenged psychiatry's hold on explaining behavior but remained separatist. By the 80's, diagnosed people were changing the mental health system from within. Some groups maintained a strong anti_psychiatry ideology; society was urged to increase social acceptance of human diversity. Some groups developed institutional collaborations or at least interactions - partnerships.

Either way, there is a shared user value base of self_determination, dignity, hope, reciprocity, witnessing, spirituality, diversity, ... and personal competence is connected with a desire for and a willingness to take public action. (1)

But in the United States, we have no national consumer organization. There are at least five federally funded bodies (2) that sometimes serve as substitutes. The family voice is well-funded and very strong, often presenting loved ones as objects of pity, as public safety hazards unless medicated. Consumers can act when the danger is sufficient. The threat of increasing unconsented interventions in New York and California mobilized many, but unsuccessfully. Progressives fear the United States is moving away from democracy in our political, social, and health practices.

In California, for twenty years we have had a now state-funded client network which joins with other social justice and provider organizations to advocate for housing and choice. However, the network has been slow to develop across the state and it’s recognition in the capitol is not matched at the local level.

In my community, in Santa Cruz, we have a county-funded peer-run drop-in which is vibrant, providing support and personal enrichment and sometimes advocating around county budget issues.

There are other groups and other voices, a patchwork that is often fringe and that generally doesn’t ally with each other or with the cross-disability or social justice community.

So that’s the United States.

The World Health Organization stated in 1978 at Alma-Ata (3) that health is holistic, biopsychosocial, and I would add spiritual, and that "the people have the right and duty to participate individually and collectively in the planning and implementation (organization, operation and control, and I would add evaluation,) of their health care," and that a target is a "socially and economically productive life."

Mental health has been failing on all counts - though users and survivors are beginning to be included, that inclusion is not yet meaningful and effective. Partly because there is a pervasive assumption of our disorder; a cloaked process, a lack of transparency about how the system works; and an unwillingness to shift to a more-than-medical understanding. I hope that this convening will signal a change in direction.

Now, about organizing

There are three things that I think are preventing us from finding each other, each other, money, and shame.

About each other, when we are together, some are timid, some bully, arguments become about each other instead of about actions, we resent those who gain power or collude, we challenge each other for political correctness. At first when I began to give presentations at meetings, I was afraid of the professionals, afraid everything I said would be seen as a symptom and labeled - grandiose, paranoid, litigious ... and I would shrink into myself. But lately I’m more afraid of the critique and challenge of my colleagues, that my views and behaviors are inadequate because they don’t match some one else’s views. WHO has noted in prior reports that in much of the developing world, patient/consumer movements are embryonic and there is little community or self-perception of consumers or carers as partners in the mental health policy development process. If we don’t learn to put personal agendas second to the networking and rights work that needs doing, policy will continue to be about us, without us. Can we join in our shared pain and outrage and move on to make changes that will serve us and better our life quality.

The second obstacle: About money: the strong US local consumer organizations are dependent on public funding, and many consumer leaders earn in the public system. One can be risking one’s job security by trying to make change from within. But there are ways to organize without much funding, using technology and volunteer energy. Start by thinking local and small, then linking with the group in the next city, then the next, - soon there is a network.

And lastly about shame: many have internalized the dependence taught by the medical model, that we have a disease, that doctor knows best, that we must defer to medical authority, and that we must show gratitude so the enforcers won’t feel guilt about the indignities imposed on us. It’s hard to stand tall when we are positioned as a threat by those who say they are on our side. Our sense of shame inhibits social participation, creates painful loneliness, deprives us of belonging, prevents us from finding each other.

Therefore, organize.

A peer network provides a touchstone, a place of acceptance and safety for the self, for the soul. We give each other a sense of the possible.

But we need a business model that is based on mostly in-kind resources; we need role models; and we need goals. Users and survivors need to ask ourselves the hard questions - What do we care about? What are our responsibilities? How do we carry them out? What kind of a community do we want within our organization? And in the place where our organization is, what kind of a community there? How do we know if we have been successful in our organizing? What’s the biggest obstacle?

We need to stop being reactive, distracted by wheel-spinning discussions about what we call ourselves and anti-stigma campaigns that only embed negative stereotypes. We need to be proactive, advocates for ourselves. And we need to emphasize mutuality and connection as much as action and opposition. So far we have no clear sound-byte message. I’m anticipating today and tomorrow listening to your ideas.

What we do have is the World Network of Users and Survivors of Psychiatry, WNUSP, doing dazzling global human rights work, and you are the base. Your local group. Your state group. And we have at least two other groups represented here which are doing international work, David Oaks from MindFreedom Support Coalition International, and People Who, the internet resources I maintain. So, how leverage all this work? I’m interested in information and communication technology and building e communities and would like to exchange email addresses with all of you who like email. 20 million Italians use the internet. If you use email and can speak and write basic English, I’d be pleased to be in touch and I, and I expect others here, could even come to your cities for a few days to help you get started. Let’s join together towards a first goal — that all medical interventions must have full and informed consent. Internationally, this goal is embedded in the concept that all people have legal capacity.

As much as we need to find our own identity, we need equally to create coalitions – the disability community understands the indignity of forced interventions and disrespect; the social justice community understands social exclusion. Once we are able to move past our own pain, move towards the mainstream, we have natural allies who will join with the motto of the disability world: Nothing About Me Without Me.


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End notes:

1.  Extracted from Owning Madness, www.peoplewho.org/sylvia/om

2.  CONTAC, Clearinghouse, NEC, SOCSI, NACSMHA

3.  euro.who.int/aboutwho/policy/20010827_1

4.   This presentation was informed by e conversations with several US leaders. Sheila Cooper made this point.