Politics and Health in the New Millennium

Guidance and structure today appear protean. While there are a multiplicity of integrated systems, separate nodes form and dissolve, and impermanence seems good enough. As culture evolves in a chaotic, multiple, plural, temporary, fragmented, indeterminate (Johnstone) direction, use of fuzzy and just-in-time management tools adds to the non-linear results. "One, two, many" and "on, off, maybe" are replacing Boolean clarity with complexity and continuum.

Ambiguous, changing situations call into question the nature of the problem itself, have problematic amounts and reliability of information which is interpreted in multiple and conflicting ways, clash over political and emotional values, have murky goals, lack time/money/attention, reveal paradoxes and contradictions including vague roles and unclear responsibilities, lack measures of success and do not understand what is causal, and use metaphor and symbol in a fluid process (Weick).

The structure and management of the Internet reflect these ambiguities. US Internet growth has been stimulated by rate structures permitting unmetered local phone calls. The Internet is providing a simultaneous real-time continuum which activists use to rally the grass roots and respond in ways never before possible. Our Internet discussion lists and other works create a community of interest and raise public and consumer/survivor awareness of the ethical, legal and social implications of current psychiatric practices. I see three continuing themes: language; coercion; work, service and inclusion.

Language

When I speak personally about my mental health to People Who aren't, I often note in my listener a shiver of awareness, a protective barrier raised between us. I try to shrug off the distancing from me and the subject. I know that language trains thought, that language alters thought, that language is an agent of change, that verbal humans share assumptions and change social perceptions through language. I want to use language in the most effective way to present my mental health problems as one of several parts of my whole health picture. I want language to help me reduce discrimination against people who experience mood swings, fear, voices and visions.

The World Health Organization (WHO) recognized the importance of wording in 1948 when it adopted carefully crafted language which defined health as physical, mental and social well-being. WHO's words recognize that well-being is seamless, affected by interior and exterior tangible and intangible events. The WHO establishing document conforms to the Charter of the United Nations (UN).

Thus there is global intent for health to be encompassing and integrated. Naming some types of health logically allows other types of health to be excluded. The UN and WHO establishing documents deliberately do not do this.

Whenever physical illness is verbally separated from mental illness, the health context narrows. An opportunity is created for discrimination and shaming of users of mental health services. I would like mental health thinking, goals, and language to integrate behavioral health with other health in order to develop seamless health concepts and care.

Every time the distinction between physical and mental health is underscored, the holistic seam unravels. Making the distinction invites comparison and renders mental health inferior. It helps to permit shame and shaming. It can allow the separating off of people who experience mood swings, fear, voices and visions.

Separating mental health from health, on the grounds only by carve-out will mental health be able to compete for funding, perpetuates the segregation and stigmatization of users of public mental health services. Inclusion, motivation, and good faith are key themes in the ongoing tension between order, freedom, beneficence, and autonomy in the ongoing public mental health philosophic dialogue.

Coercion

The public mental health system uses police to gather in, handcuff and transport patients; restraints, chemicals and electricity to subdue these patients; secrecy to withhold records; and legal authority to rename this medical care. For instance, a pressing current concern is increasing use of convulsive electrical treatments for senior women without their consent or full information. Institutional psychiatry is a violent system.

Yet, a recent report on trauma indicates that as many as 80 percent of those who later receive a diagnosis of mental illness have been sexually and physically abused (Auslander). Public policy that has reformulated abuse and trauma as medical disorders blames the victim and retraumatizes.(1)

The silence in psychiatric services about sexual assault is beginning to be broken. NASMHPD has made a start in recognizing violence by passing a unanimous position statement which included these words: "NASMHPD is dedicated to furthering the understanding of the effects of physical and/or sexual abuse and increasing its treatment within the public mental health system" (NASMHPD). I would like the spotlight to shift away from only medicating the effects of the abuse and correcting the victims to looking at the causes of the abuse itself.

NAMI launched the The Treatment Advocacy Center (TAC) in the first quarter of 1998. A few months later TAC spun off, though there still are shared board members. TAC has a mission to make it easier to commit psychiatric patients, inpatient and outpatient, in order to force compliance with a medication regimen (NAMI). TAC has targeted California laws and has started to hold hearings which demonize people who experience mood swings, fear, voices and visions and exclude us from testifying (Wieselthier).

The coercive acts that TAC advocates are intolerable in a just society. This is as true today as it was in 1776, when this nation cut the cord with England because of what the colonists called The Coercive Acts. The National Alliance for the Mentally Ill has over $20 million dollars in its various organizations and spin-offs, including TAC. And the pharmaceutical industry is willing to help even more because more force will sell more of their products. TAC has forgotten, as the Bazelon Center for Mental Health law has countered, that "Coercion is NOT a state's right."

TAC parodies language by speaking of coercive medical interventions without consent or due process as assisted treatment and objectifies those whom it would see coerced as brain-diseased and decisionally impaired. The zealous accusatory style matches a political mood in some parts of the United States of absolutist morality about birth, death, and truth. More and more I see how disrespectful language denotes what for me is an unethical stance. Today's thrust to force treatment of redefined neurobiological disorders is reminiscent of other eugenics movements and allows not looking at the social order. This is another step in the transformation of the meaning of madness.

Work, service and inclusion

CMHS has funded a three-year study of consumer-operated service programs. Validation of those models will lead to increasing funding and use of complementary services, and employment of people with psychiatric disabilities in these programs and in the broader mental health and health workforce. More will use what they learn about accommodations to enter mainstream employment as more workers disclose and use the provisions of the ADA.

Prior emphasis on the concept of empowerment has shifted to the idea of recovery and personhood and now is moving towards transformation. A recovery advisory group is reviewing outcomes measures, and a section on these three ideas has been included in the forthcoming Surgeon General's Report on Mental Health. WFMH and CMHS have established Consumer Advisory Councils. Token single consumer representatives are becoming pairs.

The question of who is a stakeholder remains problematic. As NAMI merges its goals with those of the medical and pharmaceutical industry, the primary voice needs to keep sounding in a strong and clear way. Emphasis on privacy and confidentiality also serves to prevent people who experience mood swings, fear, voices and visions from finding and supporting each other in insisting on our authenticity and relevance as the most significant stakeholder.  I have learned to beware of partners who have no interest in recovery -- all those who profit materially and/or psychologically by the maintenance of illness and need.

Where are People Who now?

Historically, the movement has been adversarial while at the same time touting consensus as the recommended process. The result has been splinter groups and ad hoc task-oriented coalitions. We have not developed community/village/connection -- one united voice. Maybe we can't. Maybe we have only tasks in common, not community. We are both rallied and weakened by the thrust to polarize. But it is the bureaucratic structures that require one voice, one position, one leader. We are using the Internet to look for another way.

Our discussion lists are small groups, loosely woven into community, community which many of us have never experienced. We are a combination of small groups and a global presence. We have a local sense of community and we are nationally organized, even internationally. We are leaning toward alliances by setting goals and linking together to accomplish their tasks. We are learning from the ongoing e mail exchanges that each perspective is valuable, and we increase our structural latitude as we move from relationships and needs to issues. The movement has taken form among peers, gained credibility among stakeholders, and its current challenge is to take form within its own community (Brock).

We like how the Internet questions the role of professional privilege. We like how participation has led to personal efficacy. Collaboratively developed reports and position statements extend the model of participatory action research and circumvent some of the problems with getting a majority to meet together on even a preliminary already developed plan.

We remain unsure how best to coordinate national, state and local work. Local jurisdictions want state help but not intrusion. Similarly, states want national block grant funding without restrictions.

Mental health service agencies are not yet up to speed electronically, and professionals wish to have good access themselves before advocating for computers for their clients.

The family movement has worked successfully for housing and insurance coverage, and yet the biggest threat to consumer autonomy is the affluence and political savvy of the family movement.

I keep wondering why we are not moving faster.

A long-time advocate sums up:

I hate that word "treatment." It's been twisted ... by the

system and perverted beyond recognition. If they lock you up against your will, strip you literally and figuratively (of your rights) and force you

into bondage and solitary confinement and then inject you with powerful and painful drugs, they call it "treatment." In every other possible realm on earth, this is torture and not "treatment." If they set a fifteen minute

appointment for you to renew your drugs every two weeks or month, they call that "treatment" and they can bill your insurance for payment. I consider it fraud. (Risser)

1. Medicalization has also led to increased marketing by the pharmaceutical industry and by the helping professions, for instance a 26-pages-a-year growth in diagnostic categories. Pharmaceutical firm Eli Lilly and Co. posted fourth quarter net income of $567.3 million. In the fourth quarter, 84 percent of Lilly's total sales growth came from newer products, including schizophrenia drug Zyprexa. Zyprexa sales made the biggest gain in the year, nearly doubling to $1.44 billion. January 28 INDIANAPOLIS (Reuters)

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