Family-Organized Mental Illness Advocacy Groomed, blond, confident, the family advocate articulated from the podium carefully, with strength: "The horror of mental illness ..." "horror" I felt the cry of this soft-seeming word as if a laser were searing my being, shattering my sense of myself as a member of a caring family. "horror" I heard "the horror of your illness," "horror ... you," "horror," "horror," "horror" This speaker was telling me how parents felt, "horror," "horror," what my children wouldn't tell me, "horror," "horror," what my sister feared. I felt an intruder. Afraid to speak, I tried to make myself outside as small as I felt inside shamed, vulnerable, unwanted. I imagined shaking hands with her, that she would want to wipe off the touch of my horror on her skirt. We were at the plenary assembly of a federally sponsored annual meeting reporting the results of innovative community programs. I sat with 250 invited others at the Holiday Inn and listened as, again from the podium, another mother brandished the "tragedy of mental illness." At the word "tragedy," many in the audience sighed inwardly in shared pain. Even though my own family was not like this, I saw an image of visiting my parents, reaching out for an embrace, and watching their hopelessness as they greeted their tragedy. I felt so dishonored. That was in the fall of 1993. For six years I had been facilitating a local support group. I had attended local advocacy meetings and even a few national conferences. I had met friends and families who were caring and supportive. But I was new to national advocacy and that was my introduction to the powerful, well-funded mental illness lobby of families whose mission is to make the family issues central, to reveal the family pain, to spare the family image. Later I learned how in 1979 families had organized to protect themselves from parental blame, how they had put forward a biological model of disease, and how their methods had become more direct. Now, in 1997, I've served on boards and led groups and gone to conferences. Now, I have seen the families' relief at finding exoneration become a zealous compact to medicate any social disarray. I've felt their shunning since I started publicly to reformulate how I thought about my experiences of 1987. The family advocacy I watch seems to focus on the family's misery, the family's despair, the family's efforts and frustrations, the family's engrossment with itself. Where is the valuing of the experience of the patient? Despite a convincing collection of serious diagnoses, hospitalizations, and treatments, we who get on with our lives and offer ourselves as examples of recovery are dismissed as not really ill, exceptions, misdiagnosed. Instead, the image of the loved one that is cherished is of one terribly, terribly sick -- without hope. I see an example of self-absorbed collateral family members intent on stilling the patient's voice: the primary voice. Suppressing this voice with, if needed, handcuffs, restraints, sedation, seclusion, family advocacy thus has a chilling effect on the civil rights of individual loved ones. These violent interventions make me wonder what this loved voice might reveal if it were allowed to speak? Instead, the voice is silenced by use of what is now a political phrase, "the mentally ill," the mentally ill loved ones. First the illness is specified as the class of being, then others' love, and finally stigma, by noting last the person, vaguely: "ones." The advocacy is "for" not "with." Supporting violent interventions in the name of mental health care seems to me to be topsy turvy. Family advocates seem not to consider the impact of their patronage on the loved ones, discounting the loved ones as unaware of what they, these loved ones, themselves need. I am wounded by the advocates' language. I am not well served by this reproduction of stigmatizing, patronizing sympathy, these repeated images of disturbance. What I want from those who love me is not sympathy. I want my family members to welcome me, as me, just for being me. Words express and interpret; words include and exclude; words matter. Verbal categories mold thinking; verbal categories can be conducive to integration or to discrimination. Family advocates shape and use words and ideas in ways that seem to me to change the meanings so much that for the sake of clarity, different words should be used. For instance, there is a pharmaceutically funded family Campaign to End Discrimination. But that Campaign itself abets discrimination by separating and segregating mental health services from other health care. This is called "carve-out." The administrative and funding segregation supports stigma and allows seamless whole-person health care to unravel. Family advocates support mental health insurance parity but refuse to stipulate that parity's benefits exclude forced treatment. No other health care is forced on legally competent adults. How is it parity to have health benefits cover as a benefit coercion, coercion which is specific only to mental health? Web pages list arguable information as fact, as if by wistfully calling the points of view fact, one could make them true. People are described as "brain diseased" to insist on a medical model of illness without recovery, to advocate for coercive services. Family advocacy agrees with biomedicine and turns problems of living into disease. But what about advocating for jobs? What about advocating for autonomous housing? What about advocating for personal assistance care? What about independence? Family advocates regularly breach privacy by telling their children's stories, not appreciating that these stories are not family property but belong to the primary patient, not to the family. They tell of their loved one's labels and behaviors. So urgent are the wishes of active family advocates that they use their children's voices, disallow independence, and sensationalize their children's anti-social activities. I have never heard family advocates assert that they have informed consent to tell these stories. I have rarely seen parents beside their own child, testifying together in advocacy for the same goals. Family mental health advocacy is a movement of second-hand and subordinate reports and testimony and stake holders. Only token first-hand sources are included. Yet the MacArthur research shows that family and physician reporting is no more authentic than the patient's description. Even when the patient is labeled psychotic, the person's reporting of events is sufficiently accurate. Family members seem to be grieving for who they remember their loved ones were at some earlier time, while objecting to who those loved ones actually are now. In any social setting, rules must be learned; then rules must be tested and questioned and retested to be sure they are still applicable; that is the way of maturing. Authoritarian families curtail this growth with coercive interventions and a flourishing fundamentalism, using fear, polarities, displaying no tolerance for ambiguity, no flexibility, accentuating the unnegotiable authority of the medical and psychiatric professions. Not all families are authoritarian. Some understand the many parts and obligations of parenting. Perhaps the hardest, arguably the most important, is to trust the child enough to let go. Contrary to social trends of diversity, globalization and openness, the family movement fragments, segregates, isolates, imposes secrecy, shames. I believe today's mental health treatments will be remembered along with the Salem witchcraft trials as a shameful scapegoating of transformative experiences. I want respect, understanding, acceptance. When you speak of my life as a tragedy, you are robbing me of my dignity. I want you to see my potential, and to stop sensationalizing the family despair. I don't want to uplift you with my pain. If you can't love me as me, or accept me, or respect me, at least create a life for yourself separate from me. Today's advocacy stigmatizes your loved one, me, you, all of us. Instead, of seeing disease, listen. Instead of discussing medication and non-compliance as an inability to understand one's condition, listen to your loved one's objections. Instead of thinking how you gain, think of what, with medication, your loved one loses. Instead of forcing your loved one into unwanted treatment, attend to what is wrong with services, attend to why services are refused; listen to the experiences. Put the well-being of your loved ones above your wish to fence them off. Listen for a moment. Pay attention to the flair, the ingenuity, the ability. See worth, not disease. Listen. 1997, Sylvia Caras