By Marvin Ross
Families of the mentally ill are the tireless workers who provide support and advocacy for their ill relatives at tremendous financial, emotional and physical costs. The families also are the ones who push for reforms from reluctant elected officials. It was families in the US who formed the National Alliance on Mental Illness (NAMI) to fight for their kids. In Canada, it was the late Bill Jeffries, a family member in Oakville, Ontario, who formed what was originally the Friends of Schizophrenics in Canada (now the Schizophrenia Society).
A group of family members in the US (partly tongue in cheek) call themselves the Sisters of Perpetual Determination to indicate their resolve.
Families fight for their ill relatives whatever the illness they suffer is – cancer, CP, autism, schizophrenia – and that is as it should be. But when it comes to mental illness, we are often not consulted and are shunned and talked down to by professionals. Just recently, a group of very dedicated families had to fight for months to have a representative on an Ontario Government Committee set up to evaluate mental health services before a family member was appointed.
But do not consider the Family Outreach and Support Program (FOR) in the same class as these aforementioned family advocacy groups. FOR which is funded in part by tax money is being integrated into the Canadian Mental Health Association Toronto Chapter. Despite the name FOR, from the writing of its founding executive director who stepped aside in 2015 but is still on staff, this group is not family friendly in my opinion.
Karyn Baker says that she is a mother of a child with mental illness but in her article entitled Families: A Help or Hindrance in Recovery she reveals what I consider to be disdain for families. I’m not sure if she still believes what she wrote as the article is no longer online but it was discussed by Susan Inman in a Huffington Post article and I do have a copy.
The article is a chapter in a book called Alternatives Beyond Psychiatry edited by a founding member of an organization called INTAR or the International Network Toward Alternatives and Recovery of which Ms Baker is or was a member (she lists her membership on her CV). The organization believes that emotional distress is often labelled as psychosis.
Here is what Ms Baker writes:
- “traditionally many families have not been given the information or strategies for helping their families in the recovery process. As a result, families have tended to unwittingly be a hindrance in their relative’s recovery”
- “There was little, if any, mention of recovery and no critical examination of the mental health system from a trauma-informed and anti-oppression perspective. These programs created like-minded thinking between families and mental health professionals, which further reinforced the limiting idea that mental illness is a disease and must be treated with medication or otherwise, recovery is not possible.”
- “In North America, the alliance of mental health professionals and family organizations has entrenched the medical model of mental health distress and has led to an extreme over-reliance on psychiatric medications and coercive mental health legislation. A collateral damaging consequence has been the divisiveness between the psychiatric survivor organizations and family groups. Psychiatric survivors have been highly skeptical of family involvement in the recovery movement. Often survivors have felt both the controlling and paternalistic (and often traumatizing) experience of both their own families as well as those of large family advocacy organizations.”
- “The key messages that families report taking away from the course are that: recovery is possible even without any professional intervention (for many families this is the first time they have heard this message); hope is the cornerstone to recovery – it is almost impossible to recover without hope and the family’s role is to “hold the hope”; to avoid creating learned helplessness by being overly-involved; to support risk-taking and giving the relative the dignity and freedom to fail like any other human being; to let go of controlling relative’s choices – this is their recovery journey; to stop viewing everything from a problem orientation and start building on strengths; to view madness as a human experience; don’t use coercion or forced treatment; explore alternatives and use advanced directives.
- Families also have reflected back on the importance of the group process in learning about recovery and their own behavior. Families want a place that does not perpetuate their guilt or shame about their own role in wounding their relative but helps them to acknowledge their role and behavior and help them to make change in a safe environment. Many families acknowledge that they started this journey as either uninformed or misinformed and that often their natural intuition as to how to be helpful was actually counter-productive. Families also become aware of their own internalized discrimination or mentalism about people with mental health issues. Families learn to use language that does not hurt or hinder recovery.”
None of this is evidence based nor is it family friendly unless families admit that they have been controlling and paternalistic towards their ill loved ones. Point two from her paper is still the raison d’etre of the agency as it is prominently displayed on their website. An excellent critique of the absurdity of their “trauma-informed and anti-oppression perspective” compared to the medical model was recently provided in an excellent article in Clinical Psychiatry News entitled Unmasking Trauma-Informed Care. It makes for good reading.
And my tax dollars go to programs like this when the money could be used to provide more psychiatric beds that are desperately needed.