It is ironic that this week, the Mental Health Commission of Canada's (MHCC) international anti-stigma conference contains a session, offered by Canadians, with the most blatantly stigmatizing collection of ideas about families coping with mental illnesses that I have ever seen. The picture it weaves of these families has the power to shroud them in the worst shaming they have experienced since the Freudian heyday of the schizophrenogenic mother.
The ongoing political struggles that have plagued the work of the MHCC are evident in various sessions. One of the basic dividing lines is between people who believe that psychotic illnesses are brain disorders, and those who don't. The former, supported by contemporary neuroscience, think those who struggle with these disorders usually need medications as well as a variety of psychosocial rehabilitation strategies to make the best possible recovery. This group also believes that sometimes when people are psychotic and are unable to understand how ill they are, they need to be treated involuntarily. My daughter and her friends, all of whom live with psychotic disorders, have good relationships with their families and count on them to ensure treatment in the event of future psychotic relapses.
The other position about mental illness, held by the "psychiatric-survivor movement," is well represented at this conference. This group contends that the term "mental illness" itself is stigmatizing and inappropriately applied to various states of being that should be considered part of normal human experience. Sometimes people have extreme mental distress, or spiritual emergencies or existential crises (all terms used by groups attending this conference) and these should not be medicalized. Medications should be avoided and no one should ever be treated against their will. Many of us who are family caregivers feel that the "psychiatric survivor movement" doesn't represent the beliefs of our family members.
The panel session that is focusing on the family certainly has a promising title: "The Experiential Knowledge and Wisdom of Families." However, the description of the session reveals perspectives that are rare among actual family caregivers of people with psychotic illnesses.
This is not a session exploring the "wisdom" of the families coping with severe mental illnesses. The session describes how families need help in finally becoming recovery-oriented; they need to be led out of what is termed the "stigma inherent in the family movement" and its "disempowerment" of people with mental illnesses.
The major resource listed for this session is Debbie Peterson's article "Family Attitudes and Mental Illness Literature Review." This selection of studies is used to demonstrate how destructive families are to people with mental illnesses.
It may be troubling to see a large panel at a conference fighting stigma put forth such negative stereotypes of family caregivers. However, it's even more disturbing that some people on the panel are entrusted to speak on behalf of family caregivers and offer assistance to them.
The panel has been organized by MHCC Board member and controversial CEO
of the Schizophrenia Society of Canada, Dr. Chris Summerville -- the title reflects his training to become an evangelical minister. Summerville astounded many family members soon after he volunteered to be an interim CEO of this loosely organized federation of provincial schizophrenia societies. In an interview in Canadian Christianity, he spoke of families being the obstacle to people getting treatment because they don't want to let out the "family secret."
The anti-family attitudes that frequently appear in the "psychiatric survivor movement" are well explored in the writings of fellow panelist and anti-psychiatry activist Karyn Baker. Baker lays out her position that families undermine recovery in her article "Families: A Help or Hindrance in Recovery" published in Stastny and Lehmann's anthology, Alternatives Beyond Psychiatry. In this article, she presents her version of the history of the family movement. This history doesn't mention, for example, families' successes in initiating a wide variety of new services including housing, educational, and vocational opportunities for people with mental illnesses. Instead, Baker focuses on the kind of education her group, Family Outreach and Response, has created for misguided families. The families should understand "madness as part of the human experience," acknowledge their role in "wounding their relative" and stop encouraging the use of medications.
Fortunately, this three day conference does include a session that offers a less stigmatizing perspective on family caregivers. In "First Episode Psychosis: The Experience of Parent Caregivers," Alberta nursing instructors Jane Elizabeth Hamilton Wilson and Sherrill Conroy, discuss their study which involved carefully listening to parents. These researchers discovered that a major experience for parents during these turbulent times is their enduring love for their sons and daughters. Perhaps Debbie Peterson will consider including this research in her next literature review about family involvement.
For families across the country looking through the program at the many diverse offerings at this week's conference, there is hope. We are told how important protest has been to bringing change to stigmatizing and injurious attitudes.
I am protesting.