Family Mental Illness Advocacy

Sylvia Caras


Groomed and professional, a key national family advocate articulated carefully from the podium, with gusto: "The horror of mental illness .."


I felt the hissing of this soft seeming word as if a laser searing my being, shattering my sense of my self as a member of a caring family.


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 tried to make myself outside as small as I felt inside,

shamed, vulnerable, unwanted.

When I shake hands with her, I imagined she would want to wipe off the touch of my horror on her skirt.

We were at the plenary of a federally sponsored meeting reporting the results of innovative community programs.

I sat with 250 invited others at the Rockville Holiday Inn and listened as a mother, a professional volunteer, brandished the "tragedy of mental illness." At the word "tragedy," many in the audience sighed inwardly in shared pain. I saw an image of visiting my parents, reaching out for an embrace, and watching their resignation as they greeted their tragedy. I felt so dishonored.

This was my introduction to the powerful, well-funded mental illness lobby of families whose mission is to make the family issues central, to declare the family pain, to protect the family image. It was later that I learned how in 1979 families had organized to put forward a biological model of disease to protect themselves from parental blame and how their methods had become more blunt. Then it was the fall of 1993, I was new to national advocacy, and I felt an intruder, afraid to speak. Now, I've served on boards and led groups and gone to conferences. Now, I have seen the family relief at finding support become a zealous compact to medicate any social disarray. I've felt the family advocacy shunning for ten years; I'm seasoned enough to speak my mind. I am writing this to try to regain ground and be heard not as horrible and not as tragic and not as my family's shame.

The family advocacy I see seems to focus on the family's misery, the family's despair, the family's efforts and frustrations, the family's engrossment with itself. I don't hear the voice of the patient. We who want to speak out are discounted. "You are nothing like my sister," I was told. Despite an impressive 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.

What is this wish to preserve the image of the loved one as terribly, terribly, sick, without hope? I see only a model of self-absorbed collateral family members intent on stilling the primary voice, suppressing this voice with, if needed, handcuffs, restraints, sedation, seclusion. The advocacy has a chilling effect on the civil rights of individual loved ones. These violent extremes make me wonder what this voice might reveal if it were allowed to speak?

Instead, the voice is silenced by what is now a political phrase, "the mentally ill," the mentally ill loved ones. First is specified the illness as the class of being, then others' love, and finally stigma, by noting last the person, vaguely: "ones;" and the advocacy is "for" not "with."

Family advocates seem not to consider the impact of their patronage on the loved ones, discounting the loved ones as unaware of what they need. I am wounded by their language. I am done a disservice by the reproduction of stigmatizing, patronizing sympathy, the images of disturbance. What I want from those who love me is not sympathy. I want my family members to be proud of me.

Words express and interpret; words include and exclude; words matter. But family advocates put a spin on words and ideas that seem to me to change the meanings so much that for honesty, different words should be used.

For instance, there is a pharmaceutically funded family Campaign to End Discrimination. That Campaign abets discrimination by separating and segregating mental health services from other health care. This is called "carve-out" and is a way to fuel stigma and unravel seamless whole-person health care.

Family advocates support mental health insurance parity but refuse to stipulate that parity benefits exclude forced treatment. No other health care is forced on competent adults. How is it parity to have health benefits cover the benefit of 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, they would so become.

People are described as "brain diseased" to insist on a medical model of illness without recovery, to advocate for coercive services. But what about jobs? What about autonomous housing? What about 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, belong to the primary patient, not 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, sensationalize their children's anti-social activities. I have never heard a family advocate assert that they have informed consent to tell these stories. I have rarely seen a parent beside their own child, testifying together in advocacy for the same goals.

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 reporting 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.

The family advocacy values diverge from what could best serve either the public good or their own children. Dramatic and disharmonious strategies draw away public attention from social violence, from sexual abuse, from battering. Two thirds of women who are chronic users of public mental health services have experienced early childhood abuse.The other third may indeed have neurological disorders.

According to researcher Nancy Andreason, 90% of people diagnosed with schizophrenia do not have family histories of this illness. Maybe this 90% does not really even have schizophrenia, is iagnosed incorrectly, really has post trauma stress, really experienced early childhood abuse. Because there is so much wrong diagnosis, insisting on a brain disease model has the effect of sanctioning sexual abuse. Especially when the primary voice is excluded.

Abuse creates trauma. If we continue to diagnose the signs of trauma as psychosis, and continue to suppress the abuse victim's voice with prescription drugs, we are adding to the load of social and family violence, allowing even more family battering than we now have. I wonder why there has been no bright hot spotlight to focus attention on the values of this family movement, the social impact, the harm to their very own children?

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. 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. Good parenting has many parts and obligations. Perhaps the hardest, arguably the most important, is to trust your 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 this era of mental health approaches will be remembered along with the Salem witchcraft trials and the McCarthy hearings as a shameful scapegoating.

I want respect, pride, understanding, acceptance. When you speak of me as a tragic figure, 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 even 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 diseasing, listen.
Instead of discussing medication and non-compliance as an nability 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.
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 craft. See worth, not disease.


Copyright © 1997, Sylvia Caras