This mother shares her experience of having a loved one with schizophrenia, and the difference location can make in treatment.
My younger daughter has lived with schizophrenia for 23 years. During that time, I have connected with families in similar situations in both Canada and the United States. My daughter’s life has been positively and negatively impacted by mental illness policies in both countries.
My education in the United States left me ill-informed about illnesses like schizophrenia.1 I knew much more about Freud and RD Laing than I did about the growing knowledge base in contemporary psychiatry. This problematic education in many social sciences and humanities also continues to exert a powerful influence in Canada. Both countries share a lack of appropriate public mental illness literacy campaigns. But what differentiates them?
Canada vs the United States
Ignorance led my husband and me to make serious mistakes in selecting a therapist when our daughter began floundering as a teenager. After I wrote a memoir2 about these poor choices, I heard from many families in both countries who made the same mistakes. Our daughter’s therapist’s lack of appropriate science-based training led to an unnecessarily longer duration of untreated psychosis.
Fortunately, we live in British Columbia and when my daughter became fully psychotic, she received the medically based treatment she needed. British Columbia continues to have a strong mental health act that enables individuals with psychosis to receive the involuntary treatment they often need. This access is limited in Canada, as in the United States, by a shortage of acute psychiatric beds.
Additionally, the 23 years of treatment our daughter has received in British Columbia, which have included some lengthy hospitalizations, have not cost us anything. Early on in our daughter’s illness, when I began to attend the national conferences of the US National Alliance on Mental Illnesses, I was horrified to meet too many families who had been bankrupted by their family member’s illnesses. These financial catastrophes were caused either by medical bills or by lawyers’ fees when untreated illnesses led to involvement in the criminal justice system.
Expenses for lawyers have grown among the Canadian families I have met in recent years because the same trends that negatively impacted the United States have spread in Canada. For instance, the powerful peer movement has successfully lobbied to have their training programs exclude any education about illnesses like schizophrenia while they expand their role in service delivery. It is a movement that teaches its practitioners that individuals must always choose their treatments while simultaneously not allowing individuals to learn about the brain-based illnesses that can make real choice impossible.
This is an alarming time in British Columbia. The laws that have allowed individuals like my daughter to lead a satisfying life are in jeopardy. Some provinces have adopted mental health legislation that makes it much more difficult for individuals with psychotic disorders to receive the involuntary treatment they often need to become stabilized and the follow-up involuntary treatment that they may need as outpatients. The Council of Canadians with Disabilities has launched a Charter of Rights and Freedoms challenge against British Columbia’s Mental Health Act. If successful, British Columbia will follow the dangerous direction that Ontario took; those who are a danger to themselves or others can be admitted to the hospital involuntarily, but they or a substitute decision maker must agree to treatment.
Individuals with schizophrenia and their families have suffered in both the United States and Canada because of persuasive but misguided ideas emanating from human rights lawyers and disability rights movements.3 These groups refuse to acknowledge the existence of anosognosia and the widespread lack of medically based treatment for psychotic disorders, which leads individuals with psychotic disorders in both countries to become homeless, addicted, and incarcerated.
I am inspired by the positive changes I see in the United States as a growing number of governors and mayors push back against the narrative that homeless individuals with severe mental illnesses must be allowed to choose whether they want treatment. My community in Canada is not seeing much of this well-informed political leadership, even though the growing homeless encampments in our cities and towns are full of the suffering of individuals abandoned to their psychotic delusions.
My community is also inspired and guided by the families in the United States who have developed a much stronger voice. I was able to tap into this kind of powerful advocacy last summer when Democrats Abroad and their Global Disability Caucus invited me to organize a webinar on mental illnesses for their annual celebration of the passage of the Americans with Disabilities Act.4 Using helpful resources available from the US Treatment Advocacy Center, American mother and advocate Leslie Carpenter helped an eager audience understand the origins of the current crisis and the further steps that need to be taken. American Canadian psychiatrist Randall White, MD, provided the much-needed, medically based information this group wanted. I helped others understand why the psychiatric survivor movement, which shapes the positions of most disability rights groups, should not be seen as the legitimate voice of individuals with illnesses like schizophrenia.
As I see it, the bold initiatives in the United States acknowledge the reality of severe mental illnesses and respond in genuinely helpful ways. These efforts can provide the guidance we increasingly need in Canada.
The opinions expressed are those of the author and do not necessarily reflect the opinions of Psychiatric Times®.
Ms Inman is the author of After Her Brain Broke: Helping My Daughter Recover Her Sanity.
1. Inman S. Personal accounts: becoming the mother of a child with schizophrenia. Psychiatr Serv. 2016;67(12):1290-1291.
2. Inman S. After Her Brain Broke: Helping My Daughter Recover Her Sanity. Bridgeross Communications; 2010.
3. Inman S. Disability rights groups should accept schizophrenia. Medium. June 14, 2020. Accessed June 28, 2023. https://medium.com/@suinman/disability-rights-groups-should-accept-schizophrenia-9b1220c81f2a
4. Carpenter L, Inman S, White R; Democrats Abroad. Americans with Disabilities Act Panel. Facebook. July 26, 2022. Accessed June 28, 2023. https://www.facebook.com/watch/live/?ref=watch_permalink&v=1065012114409071