Just a few days ago, the Bazelon Center for Mental Health Law, perhaps the foremost legal advocacy organization for persons with disabilities in the country, issued its “vision of community integration” for the disabled, listing the “key principles” that should be utilized to achieve that aim. Very reminiscent of SAMSHA’s recent “definition of recovery.” Bazelon stated that it felt obliged to issue its statement in view of the relative lack of progress on this front twenty years after passage of the Americans with Disabilities Act (ADA) and ten years after the Supreme Court’s Olmstead decision, both of which mandated that all services for persons with disabilities be delivered in “integrated” or “least restrictive” environments. Bazelon explained, “Within public mental health, there are abundant slogans concerning ‘Olmstead compliance,’ ‘person-centeredness,’ and ‘recovery,’ but overwhelmingly people with psychiatric disabilities remain on the social margins.” As if on cue, New York’s Governor Cuomo, in his new year’s “State of the State” address, pledged to develop an “Olmstead Implementation Plan” to guide provision of the State’s disability services. After all, “Olmstead” is referenced in the Obamacare compliance regulations.
So it would appear that “Olmstead” has joined “recovery” as the day’s shibboleths or watchwords. And while it’s evident that the provisions of the ADA have not been enforced, the only explanation that readily presents itself is that government compliance agencies don’t have the stomach for it. I had blogged about this back in late June of last year, when Senator Tom Harkin, the foremost champion of the ADA and Chairman of the Senate’s Committee on Health, Education, Labor and Pensions was reduced to cajoling private industry to hire persons with disabilities, whose unemployment rate stood then and stands today at 80%. To paraphrase the late Barry Goldwater, not one of my heroes, “you can’t legislate morality;” and when you try, as with the Voting Rights Act of 1965, the legislation Goldwater was alluding to, you’re left with a bunch of folks who spend the rest of their lives trying to overturn it. As for the ADA, who’s hated and feared more these days – on a lengthening list that now includes African-Americans, gays, immigrants and Muslims – than persons believed to be seriously mentally ill?
Bazelon also spelled out what it believes to be the principal barriers to community integration of the disabled: out-dated notions of effective services and service delivery by state and local governments; stakeholder – read “provider” – resistance to change; and lack of awareness of their civil rights by persons with disabilities and their families. Yet, why should State and local governments and individual and agency providers treat persons presumed to be seriously mentally ill any differently, i.e., as persons with legally mandated civil rights, when they’ve been incarcerating them with impunity for over one hundred and fifty years? And, why, for the very same reason, should these same persons and their families believe they have any civil rights? In Bazelon’s final analysis, the issue boils down to denial of the civil rights of persons with disabilities; but, if the Federal government has failed to protect those rights for the past twenty years, why should it begin to do so now?
The answer is political and is to be found in the powerlessness of the affected individuals. While a legal remedy might be pursued by advocates such as the Bazelon Center, a political solution, a reordering of the power relationships of the stakeholders in the public mental health system, must be sought by the inmates or survivors or peers, the stakeholders that have been disempowered or oppressed. In my last blog on this site, I defined oppression as theft of a person’s self-identity; I contended, further, that the recovery of one’s sense of self is an act of political empowerment and equivalent to an individual’s personal liberation. The liberation of all inmates/survivors/peers will, as per my logic, require the formation of a civil rights movement analagous to the civil rights movement of African-Americans subsequent to World War II, the paradigm followed thereafter by women and gay Americans with much success. As I also wrote in that last blog, the various peer organizations operating across the country appear to lack a unity of purpose at this point in time to form such a movement. They also appear to lack the militancy that a political movement invariably requires.
One of the largest and most effective peer-run organizations, the National Empowerment Center (NEC), seems intent on following a strategy proposed by Judi Chamberlin, demonstrating the competence of peers in helping one another rather than banging heads with the mental health system. Shortly after I mentioned the peer respite center run by Voices of the Heart in upstate New York, NEC advertised a webinar about respite centers that I logged onto yesterday. Several presenters spoke about the respite centers with which they were involved – in Santa Cruz county in California and Lincoln, Nebraska, to name just two – re-traced the steps each had taken to establish the particular center and encouraged interested webinar participants to consider established respite centers in their locales. All part of a concerted effort endorsed by SAMHSA and various state and local governments. Up to this point, thirteen peer-run respites centers have been established in eight states, with several more in the planning stages. The Lincoln program sounded particularly ambitious: up and running for three years; accredited by the Center for the Accreditation of Rehabilitation Programs (CARF); overseeing a supported employment program in addition to its respite house; in line to expand with county funding, as the county seeks to reduce the size of its community mental health center. Additional information about crisis alternatives and resources can be found on NEC’s website, http://www.power2u.org.
There are pitfalls to this approach, particularly co-optation by government and by public funding; but it certainly would be instructive to see how effective these peer-run programs are over the course of several years. New helping models might well evolve out of these efforts. This approach might also serve to buy time for peer-led organizations to mature to the point where the issue of oppression in the public mental health system could be confronted head-on. It’s a dicey issue, one which raises hackles in government and private agency and professional providers, most of which view their efforts to help their clients and patients as beneficial if not benign. To inform them that their interventions, no matter how well intentioned, can still be experienced as oppressive is to invite denial and provoke sharp disagreement. Inmates/ survivors/peers can more readily acknowledge the harm the system has done them and they can discuss this with one another, but to whom else in the system can they talk about it? Not very readily to the government officials and professionals who control it.
Back in May of last year, I wrote a blog wherein I proposed dumping the biomedical model and replacing it with one rooted in trauma. My own seventeen-year long experience as director of a case management program serving all of New York City put me in contact with hundreds of persons who had suffered sexual or physical abuse from childhood on. I regarded sexual and physical assault as acts of oppression, invariably replicated in the public mental health system, and spent a good part of the blog discussing oppression. Given the controversy that the word provokes, I’d like to reproduce what I wrote over six months ago immediately below. It’ll provide you with some idea of why I give it such importance. That discussion concludes with one that concerns “resilience,” which I offer to explain how inmates/survivors/peers manage to survive “a public mental health system that cannot help or protect them and is often a prime party to their oppression.”
“I was re-introduced to the notion of oppression when I read, about ten years ago, Franz Fanon and the Psychology of the Oppression, published in 1985 by Dr. Hussein Bulhan, a Sudanese psychologist teaching at Boston University. This was at a time when we were working with parolees who had received diagnoses of serious mental illness, and I was seeking to understand why mental health practitioners and community-based programs were so reluctant to help them. Was it something about the parolees or was it the mental health system itself that presented the greatest barriers?
“I had originally read Fanon’s The Wretched of the Earth thirty years earlier. Fanon was a Martinican psychiatrist who wound up in Algeria treating the torture victims of the French secret service as well as their torturers during the Algerian revolution of the 1950’s. He was witness to men and women so brutalized that they had surrendered their very identities, their social and personal sense of self, to those who had brutalized them; and he came to believe that the brutalized could only regain their sense of self, their lives, by taking the lives of their oppressors. One might remember that the Black Panthers analogized Fanon’s formulations when they spoke of racism in this country as domestic colonialism.
“Accordingly, “oppression” is a very loaded term. Bulhan defines it much more broadly than Fanon, viz., as an interactive social phenomenon involving more and less powerful persons, wherein the former, via acts or threats of physical or psychic violence, projects his/her more loathsome aspects of self onto the less powerful and the latter introjects them as her/his own. In short, the more powerful gains a sense of self at the expense of the latter who loses it, a process also outlined by Goffman in Asylums. These acts of oppression and violence can be structural or societal and institutional, as well as inter- and intra-personal. In Bulhan’s inclusive taxonomy, structural or societal violence can take the form of poverty, racism, patriarchism, homophobia, unemployment, the death penalty; institutional violence can be seen in police violence against persons of color, the incarceration of persons of color and poor persons for serious mental illnesses, the tracking of children of color and poor children into special education classes; and personal violence can consist of violence against others and against self, including suicide, self-mutilation, anorexia and bulimia. The principal consequence for those being oppressed is a sense of general alienation – from self, others, including the oppressor, from their own culture, and from creative and meaningful social practice or social roles.
“In sum, oppression and its violence impede the development of an individual’s self-identity and must be regarded as risk factors that increase an individual’s vulnerability to [psychosis].
“What can offset the adverse impact of oppression is an individual’s resilience and the extent to which the environment in which the individual resides is facilitative or supportive or not. Werner and Smith define resilience as a person’s constitutional or characterological resources that assure that an individual’s personal development will not be blocked even under adverse environmental circumstances. They emphasize that a person’s resilience is not a universal constant but waxes and wanes and is dependent on a series of variables … the person’s life cycle stage; gender; cultural context; the severity of the stressor the person is experiencing; and the accumulation of stressors over time. The key factor in enhancing a person’s resilience and in reversing the downward trajectory of a person’s life, no matter the person’s age, is what they term a “facilitative environment”, viz., one that provides nurturance, support and validation, as well as learning and vocational opportunities. They cite as examples, in a number of studies published largely in the 1980’s, effective nurturing, particularly by the person’s biological or surrogate mother; the father’s esteem and respect for the mother; an accessible support system, including supportive teachers and religious figures; and military or volunteer service that served to remove the person from a toxic or unsupportive environment.
“I concluded then, as I do now, that persons presumed to be seriously mentally ill possess a great deal of resilience. How else could they have survived what all have gone through? Indeed, in the powerpoint presentation I developed ten years ago to persuade mental health practitioners of our clients’ innate potential for recovery, I posed “oppression” and “resilience” as poles of a dialectic that could only be resolved by our “clients” themselves. Specifically, I believed, and still do, that persons presumed to have serious mental illnesses need to organize themselves as a civil rights movement whose objective would be the reclamation of what I termed their community citizenship, viz., meaningful social roles and participation.
“I had been struck in the description of the resiliency studies by the absence of psychotherapists and other “professional” helpers as members of the facilitative environments that promoted the study subjects’ resilience and successful outcomes. It appeared to me that the helpers – as opposed to the “professionals” — in those studies were able to negotiate two difficult dialectical dilemmas: social control versus social change, or to whom were they really accountable? and nature versus nurture, or could the individuals they were trying to help really change? In my estimation, they did so by remaining true to their mission, viz., to help those whom they were helping free themselves of the limitations that their family and community and larger societal environments might have ordinarily imposed on them.
“I believe, in accordance with Bulhan, that mental health practitioners have a third to address, one which Bulhan terms the “pathology of the self” – [presumed] mental illness; loss of personal functioning; assumption of the powerless patient role — versus “pathology of liberty” – loss of ability to self-actualize via meaningful social praxis or functioning; loss of a valid social role. My many years of practice experience have persuaded me that most mental health practitioners have little appreciation of the latter, i.e., pathology of liberty, and have no training appropriate to the task [of effectively addressing it]. In other words, it has never been posed to them as their mission. Rather have we all been trained, particularly over the course of the past thirty years, to tell the persons with serious mental illnesses we presume to help that they are sick, will be sick, probably for the rest of their lives, and will be better off to accept their roles as patients. Now that’s oppression!
“That’s why I prefer the trauma paradigm. How much more effective and rewarding to tell a person undergoing a psychotic episode, when she/he is able to ask, that she/he is the victim of probably lifelong abuse; that she/he can learn skills and strategies that will prevent or mitigate future episodes, should they occur; that, over time, she/he will be free to make life choices regarding roles and relationships, much as we all do. That’s known as self-determination!”
That’s it! Hope you found it helpful. Our collective task is to fight our way through the slogans and the rhetoric and get to the core of what our mission really is and means. As always, don’t mourn, organize!
Bazelon Center for Mental Health Law, “The Bazelon Center’s Vision of Community Integration,” January 23, 2012, http://www.bazelon.org
Bulhan, H.A., Franz Fanon and the Psychology of Oppression, Plenum Press, New York, 1985
Carney, J., “Sexual Abuse of Men & Women Caught Up in the Public Mental Health System: Assessment & Treatment,” powerpoint presentation, January, 2007 & January, 2012, revised
Carney, J., “Oppression & Resilience: A Dialectic with Crucial Implications for Persons Caught Up in the Public Mental Health System, “ powerpoint presentation, September, 2001 & January, 2012, revised
Carney, J., “Helping Consumers Add Years to Their Lives, VI & VIII …”, May 28 & June 27, 2011, www.behavioral.net
Carney, J., “Recovery & Liberation: One and the Same?”, January 17, 2012, www.madinamerica.com
Fanon, F., The Wretched of the Earth, Grove Press, New York 1968
Goffman, E., Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, Knopf Doubleday Publishing Group, New York 1961
National Empowerment Center, “Building the Foundation for a Successful Peer-Run Respite: Creating Connections with the Local Community,” January 25, 2012, second in series of three webinars, http://www.power2u.org
New York Times, “Cuomo Commits to NYS Olmstead Plan,” January 4, 2012, http://www.nytimes.com
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.