Advocacy and Violence Sylvia Caras I'm concerned. I'm concerned about diagnosing social problems as medical illness. I'm concerned at how we then treat those illnesses, and do not attend to the social problems. I'm concerned at how biohealing isolates and maintains the personal isolation that having an atypical experience creates. In particular, I'm concerned about the social after-effects of early childhood sexual abuse and family violence. (P)overty and profound inequities are clearly key risk factors for nearly all forms of social and psychiatric morbidity. ... (A)lthough no single, overarching theory or model can account for all social, behavioral, and mental health problems, researchers have identified a number of causal pathways that may be useful in developing intervention strategies. ... (C)urrent research on mental illnesses provides strong evidence that neuropsychiatric disorders are biosocial -- that both biological and social factors are involved. Mental disorders are not simply symptoms of broader social conditions. They also reflect inherited vulnerabilities and are mediated by neurophysiological processes. Nonetheless, the quality of a person's social environment is closely linked to the risk for suffering a mental illness, to the triggering of an illness episode, and to the likelihood that such an illness will become chronic. ... Schizophrenia is not a 'social disease', however, social and cultural factors strongly influence the course of the disease and the likelihood of recovery. ... Although neurotransmitters are implicated in major depression, trauma in childhood, such as the loss of a parent, increases lifelong vulnerability for depression; and significant losses, violence, and trauma play an important role in triggering particular episodes of depression, especially when experienced by relatively powerless persons with few personal and social resources." 1 "Of Ss who reported at age 21 having been physically &/or sexually abused between ages 6 & 18, 80% exhibited at least one psychiatric disorder." 2 Structured interviews conducted with 89 clients in a NY state-funded intensive case management program, most of whom were heavy users of acute care & psychiatric emergency rooms, reveal a gross history of undetected brutal life experiences: 50% were adult children of alcoholics, & many were sexually &/or physically abused as children or adults. None had been asked about or appropriately treated for these aspects of their background. Statistical analysis indicated high levels of correlation between exposure to alcohol abuse in the family, physical or sexual abuse, repeated hospitalization, & contemporary suffering. 3 Edward wrote, in an Internet list introduction: 4 I come to you as a survivor of abuse in the home... which my family and the 'professionals' attempted to conceal with a psychiatric 'diagnosis' pinned on me from a very early age. Out of the frying pan and into the fire, so to speak. Despite the number of times I was whipped with a leather belt, or struck across the face hard enough to knock me from my feet, it was the emotional abuse that was the hardest to deal with... reinforced as it was by the ever-present threat of violence. The most difficult thing is that there was genuine love in my family as well... that was what made the violence and emotional cruelty even harder to bear, coming seemingly at random as it did. It tore me apart. From the age of six or seven I had developed a rage inside of me that threatened at times to tear me asunder. My family's response was to take me to a shrink... meaning I had been designated as the problem, and my family was absolved of any responsibility for their abusive behavior. Edward goes on to detail his experiences as a "special ed" student, with medications, and with commitment: With the exception of one wonderful social worker who befriended me, my best relationships were with the other patients or the 'non-professional' staff... the ward secretary, members of the housekeeping staff, people from the chaplaincy department. The reason for this was simple... here were people who had no 'professional' agenda or desire for power - they were simply caring human beings. And in the patients I found many kindred spirits. Over the years I had gradually become politicized, through my own experience with abuse; with being psychiatrized, and with poverty and homelessness. I met many survivors and activists who, through sharing personal perspective and experience have contributed to my own political consciousness and viewpoint on my experiences. I walked away from psychiatry for good in 1983... and I will not willingly return. We know anecdotally that many men have been abused. But the extent of early violence in the histories of users of mental health services came to light when the women's movement began to focus on domestic violence and battering. More research on abuse in this whole population is needed, and perhaps studies on men alone to match the studies on women. Research suggests that for all disabilities, women and girls are 2 to 12 times more likely to be victims of physical and sexual violence than women and girls who are not disabled.5 "One study alone found that among a sample of 85 adult women with a variety of disabilities, 73% had been the victims of violent sexual assault at some point in their lives (Stimpson and Best, 1991)." 6 "(M)any female sexual abuse survivors suffer from posttraumatic stress disorder & have been inaccurately diagnosed with affective or schizophrenic disorders." 7 "Prevalence of childhood abuse was found to be substantially higher (among homeless women with severe mental illness) than among homeless women in general. Experience of abuse was related to increased suicidality & symptoms of posttraumatic stress disorder for some women." 8 Anne writes: Some have early abuse so pervasive that memories lie buried, yet pierce the outer mind. Fearing those who feared me put me in hiding mode, altered my personality. All those years when I could not count on more than a few months of consistency, I backed off from relationships, except for a few trusted friends. I believe a great deal of us have PTSD, just from our experiences. Stigma and the memories of altered states, and the very hard and humiliating times, leave their mark. All the volumes of clinical research followed by volumes of empirical research and the medical mode, have left out this PTSD, that almost appears so obvious it is hidden. 9 Abuse creates trauma. If we continue to diagnose the signs of trauma as psychosis, if we continue to suppress the voice of the abuse victim 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 ethics and values of biohealth? What is the moral impact of managing unsocial behaviors with medical treatments? Tom tells his story: Kidhood sucked. Oldest of three boys, I got the beatings the worst. Mom remarried when I was seven. Step-dad raped me at night frequently until I finally emancipated from their household at age seventeen. I coped by (watch out for the psycho-babble) dissociating. I also either repressed or suppressed those memories. (Can never remember which is which.) First involuntary commitment around 1980, depression. Did several stints in various "facilities" including state hospital. Diagnosis changed every time I changed shrinks. So did the drugs. Finally, break throughs and flashbacks and memories flooded. Went back and gathered evidence. Hospital records of concussions ... 13 of them in six months at age three. Court records. Mother was found to be brutally unfit but, she appealed and got some witnesses to lie for her and kept the kids. Finally had it with shrinks and their drugs and involuntary and seclusion and restraints and all the rest so, became an activist. 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 these interventions as medical care. The coercion used by the public mental health system is a form of violence. The system's use of force prevents wholeness, harmony, recovery. Biological reductionism prevents personal transformation, configuring the self as a helpless subject of chemistry controllable only by more chemistry. Yvonne writes of her in-patient memories: In all my hospitalizations, every woman I have ever talked with was sexually abused at some point as a child; it was the most common thread that would come up in group discussions. I feel most of my effect was from the fact that my mother was sexually abused and what she taught me nonverbally more than anything else--we abused women were different and inferior to everyone else. I found a man who treated me like my mother told me men treat women, I didn't know anything else existed. The Massachusetts Task Force came to understand the extent to which restraint and seclusion further traumatizes abuse survivors, many of whom often had personal experiences with abusers who restrained, forced drugs on them and locked up/isolated them. Restraint and seclusion often worsen the situation for abuse survivors because of the similarity to earlier traumatic experiences with abusers who restrained and secluded their victims. 10 Tom explains more: As a kid, I remember laying in bed almost paralyzed with fear. I heard my fathers footsteps in the middle of the night. When he came into my room to rape me, I dissociated, went rigid and felt nothing. The feelings came later. The feelings of overwhelming helplessness, hopelessness, and powerlessness came charging back with a vengeance as I lie there, in the throws of a flashback, while in seclusion and restraints in a psych hospital. Whatever anger I felt toward my father were nothing compared to the rage I felt at the callous way the hospital folks forced me into a position where I again had to relive and again in fact be, helpless, hopeless and powerless. It was so needless. They could have had compassion and understanding. There was none. Like my father and mother, they were cold-blooded in their tasks. Even though the hospital folks called it duty instead of abuse, it still forcibly gave rise to the same feelings. According to researcher Nancy Andreason, 11 90% of people diagnosed with schizophrenia do not have family histories of this illness. Could this 90% not really even have schizophrenia, be diagnosed incorrectly, really have experienced early childhood abuse, really have post trauma stress? But because there is inaccurate diagnosis, insisting on a brain disease model has the societal effect of sanctioning sexual abuse. Especially when we exclude the primary voice, the voice of the person actually diagnosed and receiving services. When a survivor of abuse is spread-eagled in four point restraints or placed in seclusion while receiving psychiatric care, she re-experiences the trauma of the original abuse. Restraint and seclusion usually intensify out-of-control or assaultive behavior and throw survivors into a continuing cycle of trauma and response. Without the knowledge of previous abuses, mental health professionals are powerless to develop an appropriate treatment. 12 Rob Ryley says clearly: "Mental illness" and "addiction" are terms that refer to behavior, not bodily processes. Since they refer to the actions of persons, their study rightfully belongs to the realm of ethics. Despite all of the scientific speculation to the contrary, none of the biological factors in any "mental illness" have been proven. The same goes for addiction. The simple dichotomy Szasz (and I) want to make are this. Phenomena fall into two classes: act and event. The physiological processes of the body do not fall into the act category. How a person chooses or behaves DOES belong into the act category. Example: The physiology of drug X on the brain goes into the latter category. Whether doctors should prescribe it goes into the former. It is much more helpful than the one giant category (disease) we now have. 13 The organized family-advocacy values that emphasize biohealth diverge from what could best serve either the public good or their own children. Dramatic and disharmonious disease strategies draw public attention away from social violence, sexual abuse, and battering. Two thirds of women who are chronic users of public mental health services have experienced early childhood abuse. 14 Some of the other third may indeed have neurological disorders. Yvonne continues, I guess my biggest complaint with drug and biological model advocacy is that they want to blame it all on neurochemistry and our body doesn't operate in a vacuum. I truly believe treating someone as sick gives them permission and the expectation to act sick, so they confirm they are sick which reenforces the behavior in a downward spiral. I believe those that recover are the ones who rebel against this label and refuse to stay sick. Unpublished data indicate that women receiving welfare spontaneously identify abuse and its after-effects as their biggest barrier to employment. 15 It's time to make change. It's time to transform images of serious mental illness to images of disability with accommodations, independent lives, lives with quality, lives in community. Workers for change must know the law, bring advocates to conferences, join groups. We must educate Protection & Advocacies to recognize abuse in institutions, in board and cares (where a resident can't even lock her door). We must educate in masters programs, social work, counseling. We must educate in criminal justice. We must educate women with psychiatric labels to be examined after an assault; to prosecute. We must generate comparable research on men. We must ensure that diagnosticians are accountable. 16 We must not allow biohealth to ignore social and family violence.

1. Desjarlais, Robert. _World Mental Health_, Oxford University Press, 1995, pp 262 ff.

2. Silverman, Amy B. *The Long-Term Sequelae of Child and Adolescent Abuse.* *Child Abuse and Neglect* 1996, 20, 8, Aug, 709-723. Quoted in SocAbstracts database.

3. Rose, Stephen M. *Responding to Hidden Abuse: A Role for Social Work in Reforming Mental Health Systems* *Social Work* 1991, 36, 5, Sept, 408 - 413. Quoted in SocAbstracts database.

4. The names in this essay have been changed to ensure the privacy of the speakers. Some attributions are compilations.

5. From the introduction of DRAFT RECOMMENDATIONS ON PROTECTIONS FOR VIOLENCE AGAINST DISABLED WOMEN, e mail posted to Cal_Wild @igc.org, 8 September 1997.

6. Marlene Strong and Ann Freeman, *Caregiver Abuse and Domestic Violence in the Lives of Women with Disabilities*, Berkeley Planning Associates, 1997, p 3

7. Rosenberg, Stanley D. *New Directions for Treatment Research on Sequelae of Sexual Abuse in Persons with Severe Mental Illness." *Community Mental Health Journal* 1996, 32, 4, Aug, 387 -400.

8. Davies-Netzley, Sally. *Childhood Abuse as precursor to Homelessness for Homeless Women with Severe Mental Illness* *Violence and Victims* 1996, 11, 2, Summer, 129-142. Quoted in SocAbstracts database.

9. E Mail to Act-Mad Discussion List 15 Sep 1997

10. Preliminary agenda, National Conference on Women, September 21 -24, 1997, Phoenix, Arizona, D.1, p 15

11. Brian Chiko, Internet posting, June, 1997.

12. Preliminary agenda, National Conference on Women, September 21 -24, 1997, Phoenix, Arizona, D.4, p 15

13. E Mail to NuVuPsy Discusson List 15 Sep 1997 from Rob Ryley, rmr7@TIGER.UOFS.EDU

14. Human Resource Association of the Northeast.

15. Marlene Strong and Ann Freeman, *Caregiver Abuse and Domestic Violence in the Lives of Women with Disabilities*, Berkeley Planning Associates, 1997, p 23.

16. When I am forced to use health care benefits that will pay for treatments over my objections, I am concerned. Right now, it is crucial to define health care mental health benefits to pay only for voluntary, uncoerced treatment to which the patient has consented. We must prohibit medicine by compulsion.