Help Us Help Our Children

I have been doing a lot of public speaking lately about my experiences being the parent of someone who has a catastrophic mental illness. Mainly I speak to audiences that are full of other parents, mostly mothers, in similar circumstances. I always ask the parents in the audience to raise their hands if they've been blamed, at some point, by mental health professionals for their child's disorder. There are very few people who haven't gone through this ordeal.

Before I go any further in my presentations, I hold up Dr. E. Fuller Torrey's Surviving Schizophrenia, A Manual for Families, Patients and Providers. After explaining to the audiences that Torrey is the most important research psychiatrist in the world, I read the section in which he explains that there is no evidence whatsoever that schizophrenia is connected to poor parenting. He doesn't doubt that horrible treatment by parents can cause terrible problems; it just doesn't create schizophrenia or bipolar disorder.

Psychiatry and psychology for most of the 20th century blamed parents for autism, schizophrenia and bipolar disorder. I trained in these theories in the 1980's when I did graduate work at UCLA. Refrigerator mothers, we learned from Bruno Bettelheim, cause autism. Anthropologist Gregory Bateson, the father of family systems theories, was so sure that schizophrenia was caused by mothers sending mixed messages that he didn't need to actually do any empirical research on this hypothesis before it became a widely held belief.

During the past 10 years I've learned a lot about serious mental illnesses and about the situations of families who are trying to cope with them. Because many parents my age were immersed in the belief that 'nurture' not 'nature' was the deciding factor in how a child's life develops, we were especially unprepared for our children to develop serious mental illnesses. The onset of my daughter's schizoaffective disorder was made much more chaotic by our decision to take her to a private therapist when her symptoms were first developing. In my recently published memoir, After Her Brain Broke, Helping My Daughter Recover Her Sanity, I describe the dangerous consequences of this decision. Our daughter's therapist, we eventually understood, had been trying to help our daughter uncover some kind of non-existent family secret that would explain her symptoms.

Our daughter's therapist had an MA in counselling psychology from a major Canadian university. We later realized that this program neither required nor offered any course on serious mental illnesses. This program is not unique in this astonishing omission. Many programs across Canada that train people who work as mental health professionals also do not provide training in schizophrenia or bipolar disorder. Because one in 100 people have schizophrenia and one in 100 have bipolar disorder, these clinicians do come into contact with people with these disorders, and their uninformed responses can cause real damage. Early psychosis intervention programs are becoming more widespread, but they need informed mental health practitioners to make these important referrals.

Parents treated as the problem

Paradigm shifts don't happen quickly. Even though the blaming of parents for serious mental illnesses is no longer overt in many environments, the covert blaming causes many difficulties for parents. Even if parents aren't openly blamed, their efforts on behalf of their ill children are very often undermined. Unless they secure expensive legal documents, they are routinely excluded from contact with mental health workers. I know of many mothers who, despite their best efforts, have not been included in discharge planning when their son or daughter is leaving the hospital. Sometimes they know nothing about the pending discharge until their still ill child arrives at their door. Even in outpatient interactions, these mothers have to be persistent in their efforts to provide much-needed information about the condition of their child, information that is necessary to make the best medical decisions.

Because mental health workers haven't been receiving the education they need, parents often end up having nonsensical interactions with them. When my then 15-year-old daughter, Molly, was in Vancouver's Children's Hospital, she was manic and psychotic. During my daily visits I could see that she was taking outdoor breaks with two very tough-looking girls who were smoking. These were the kind of girls that my previously gentle and thoughtful daughter had avoided and had been bullied by in the recent past. In years past, Molly had been quite adamant in her criticism of the tobacco industry. In her unstable state, I was concerned that she, too, could end up as a smoker during these difficult weeks. I approached a nurse to discuss the problem; I asked if my daughter's breaks outside could be scheduled at a different time. The nurse had found her moment to apply her therapeutic wisdom. She explained that Molly was now 15 and I really needed to work on letting go. Molly needed to be allowed to make her own decision about whether or not she wanted to smoke.

This notion of the overly involved mother is especially persistent and pernicious. Common sense tells women that their currently ill children need their assistance, while mental health professionals are too often quick to label their efforts as intrusive and pathological. I recently saw a guidebook for parents, put out by a publicly funded agency, focused on helping parents learn how to be less involved so that they don't impede their children's recovery from serious mental illnesses. During the past 10 years I have come to know the situations of many, many parents quite well. I can't think of a single case where parents weren't able to appropriately distance themselves as their child became better. What the guidebook didn't offer is the help parents really need, help in learning how they can manage the extraordinary challenges of assisting an ill person become better.

The social burden parents bear

The guidebook also didn't point out how often families have become the major caregivers for ill relatives. A 2003 article, "Family Members Matter," published in CAMH's Community Mental Health Evaluation Initiative newsletter, discusses the culmination of a five year study of family initiatives. It reports that, "Families make up the largest group of community caregivers for people with serious and persistent mental illness" (CMHEI Newsletter, Number 6 -- Winter 2003, page 1). It goes on to describe how the health care system in Ontario is operating under severe fiscal constraints. Hospital and other institutional services for the mentally ill have been reduced, resulting in a greater demand for community-based services. But funding for community mental health services has not grown to meet the demand.

Increasingly, families are relied upon to act as caregivers to their ill relatives. Research has shown that the role of caregiver places great emotional and psychological strain on family members. This burden can be especially great for caregivers of people with severe mental illness (CMHEI Newsletter, Number 6 -- Winter 2003, page 1).

Obviously, the pattern that this research describes is not unique to Ontario.

Where are supportive voices?

As I've become more aware of the extraordinary difficulties confronting women of children with serious mental illnesses, difficulties compounded by the legacy of theories that pathologized these women, I've noticed the absence of academic feminist voices tackling the relevant issues. How, I've wondered, could such unfair treatment of so many women go unexplored?

Then I began to discover feminist voices dealing with serious mental illnesses. And I've been shocked. Rather than responding to what I see as the central issues confronting people like Molly and the parents, mostly mothers, who advocate on their behalf, I see these voices uniformly taking disappointing stances.

There seems to be consistent features to their positions. They appear to be anti-science. Families lobbied desperately during the latter part of the 20th century for psychiatry to return to its scientific roots. Finally, by the 1990's, the notion that schizophrenia and bipolar disorder are neurobiological disorders began to gain widespread acceptance. Organizations like the National Institute of Mental Health and the Stanley Research Center in the U.S. began to focus much-needed resources on researching serious mental illnesses. People who are open to the notion that science has a role to play in helping people with serious mental illnesses can easily explore the thousands of research studies investigating the neurochemistry of these disorders.

I first realized that feminists were not supportive of the role science can play in bringing help when I came across the Madness, Citizenship and Social Justice conference sponsored by Simon Fraser University several years ago. Prominent feminists were among the organizers. Initially thrilled by the title, a quick examination of the conference presentations revealed that there was not one science-based presentation. Although research studies show that most people with these disorders can get much better through the use of medications, there were not any presentations making this clear to conference participants. At that time, I was president of the B.C. Schizophrenia Society -- Vancouver /Richmond branch, and was able to quickly organize a list of 50 consumers of mental health services and family members endorsing a request for the conference to include at least one presentation providing this essential information. Our request was turned down with a letter mentioning that these mainstream notions are easily available. Are they?

Shut down in the classroom

In my book, I describe the kinds of situations that emerge when graduate students are not adequately exposed to the vast scientific literature exploring these disorders. Molly was thrilled when, after several years of intense one-to-one work to redevelop her thinking, speaking and writing skills following her two year psychotic episode, she was able to take a college course. She was excited about the ideas she learned in her introduction to sociology course, until the topic was serious mental illnesses. Molly, who knows a lot about serious mental illnesses and has a very healthy acceptance of her quirky brain, had previously disclosed to her classmates that she lives with a schizoaffective disorder.

The instructor in the course explained that there is no actual evidence that 'so-called mental illnesses' are real; they've been made up, she asserted, by pharmaceutical companies and psychiatrists. Molly raised her hand to share her lived experience; she explained to the class that when she has tried to lower her dose of her anti-psychotic medication, she becomes psychotic again. Her instructor assured her that this isn't true, she just needs better talk therapy.

Molly returned to her next class with a couple of studies from the National Institute of Mental Health, the largest research organization in the world investigating serious mental illnesses. The articles were on research on the brains of people with schizophrenia. The instructor wouldn't look at them, stating the NIMH isn't credible. Seemingly no scientific data is credible.

Besides the disturbing experiences in these courses that people with mental illnesses and those who know that these are indeed very real neurobiological disorders have to endure, there are even more serious dangers to this kind of sloppy thinking. Research shows that it is very tempting for people to stop taking their medication once they are feeling better. People who haven't had excellent psychoeducation courses and who don't have a firm understanding of their disorders can easily be persuaded to go off of their medication. The great majority of people diagnosed with schizophrenia who don't continue their medications suffer relapses. These relapses make recovery much more difficult.

Anti-psychiatry feminists

I have been trying to understand the thinking behind the anti-psychiatry feminists who dominate the discourse about these disorders. One of their ideas that is most alarming to me is that the labelling of people as having a serious mental illness is extremely destructive. I haven't seen any credible research to support this theory. Molly and her friends, as well as their families, were relieved when there was finally a diagnosis that could explain the horrible experiences that they had been having. Some people still seem to perpetuate the misguided notion that psychosis is a fabulous voyage of discovery; I read these ideas in the work of R.D. Laing in the 1960's. By the end of his life, Laing, a psychoanalyst, didn't even believe these ideas.

Certainly Molly and her friends found nothing to celebrate about the terrifying delusions, hallucinations and the general thought-disorder that they had experienced. Medications gave them a way out of utter dysfunction and a chance to rebuild their lives. The existence of a diagnosis, rather than stigmatizing these people, gave them a way to explain to people that the strange behaviours others had witnessed weren't freely chosen; they were the result of brain disorders that can be treated. The public has learned that people with autism, ADHD and epilepsy have brain difficulties, and this has helped make them become tolerant of behaviours that would otherwise lead them to treat people suffering with them badly.

I have wondered if the issue of mandatory treatment has been a stumbling block for feminists. I certainly would have never thought that I'd believe that anyone should ever be treated for some kind of mental disorder against their will. Of course, that was before I actually understood serious mental illnesses. Psychosis is a break from reality and psychotic people often don't understand that they are ill. This isn't surprising. Pet scans, for instance, reveal that people like my daughter who experience auditory hallucinations, are actually hearing voices in their own brains. It's often extremely difficult for families to help hospitalize ill family members against their will. Many, like my family, are fortunate that once the ill person has recovered, they are grateful that their families loved them enough to ensure that they were safe and could receive the treatments that helped them come back to their rational minds.

This is one of the most contentious issues in contemporary mental health policy. For many years, Loyanne McCuaig, employed by the B.C. Schizophrenia Society, spoke on behalf of people with schizophrenia. She shared her story of experiencing late onset schizophrenia and ending up homeless on the streets of Vancouver. She was often taken to emergency rooms and, at times, even admitted for several days to psychiatric units. A mental health advocate would soon arrive and assist her in managing the mental health hearings she requested. Overcrowded hospitals were willing to discharge her to continue her life on the streets until one psychiatrist circumvented the system. After several weeks on an anti-psychotic medication, Loyanne's mind began to clear up and she began a long road to recovery. She did not think that society had done her a big favour by respecting her civil liberties and allowing her to be severely mentally ill for 10 years.

Denying that 'mental illness' exists

The recent conference, PSYCHout, put on in Toronto in May 2010 had many of the same anti-psychiatry groups that had participated in SFU's conference. Bonnie Burstow, the feminist academic from OISE who helped organize the conference, focuses on the importance of ending the practice of psychiatry. Psychiatry helped my daughter and countless people like her who have bipolar disorder and schizophrenia overcome the agonies of these disorders.

Some feminists object to even using the term 'mental illness.' Why, if these disorders aren't real, should people with them receive disability pensions or supported housing opportunities? Why should my daughter and people like her receive the crucial supports and accommodations that enable them to try to continue the educations their illnesses disrupted? Many families are advocating for more research into these disorders, for more opportunities for people to access cognitive remediation opportunities, and for better psychosocial rehabilitation programs. Why is any of this necessary if the only problem is the labelling of people who just happen to be different and experience 'extreme emotional states'?

Some writers explore the social determinants of the course of mental illness. This seems useful, since the resources promoting recovery are so inadequate. However, my closer examination of these writers reveals no place in their thinking for the neurobiological origins of these disorders. It's become obvious that this approach quickly leads people back to relying on the idea of toxic families, albeit families crippled by difficult social circumstances, as the source of the problem. How can families, especially mothers, be the powerful advocates for their children that they need to be, if they are undermined by those to whom they should be looking for crucial support?

Mothers deserving study, support

I'm eager for someone to help me find the feminist thinkers who have something to offer the many, many women I know who have children with serious mental illnesses. It has been by starting support groups with these women that I have received the most important guidance in my journey to be the best help possible to my daughter. These women demonstrate remarkable resilience and resourcefulness in handling challenges they did not ask for. Most of us have other children who have thrived and with whom we have wonderful relationships. Others may think these warm relationships and the successes of these children reflect on our skills as mothers. We mothers know that much more highly skilled efforts have been required to help our children living with serious mental illnesses find adequate treatments, avoid the drug addictions that plague too many consumers and stay out of prisons when they've been unwell and tried to interact in the world that no longer made any sense to them.

These mothers' experiences are worthy of research. In order to offer the help that can lead to the best outcome, many of them have had to quit their jobs or begun to work part time. Some of their marriages have floundered in the wake of coping with such significant stresses and they are now trying to manage as single parents. There is basically no respite care available to them.

The future of my daughter, people like her, and the families who love them will continue to be tremendously impacted by the public understanding, or misunderstanding, of serious mental illnesses. Some within the Mad Pride movement don't want further research into mental states that they celebrate. My daughter knows how much better her life could be if adequately funded research could lead to improved treatments for the illnesses with which she tries to cope.

Maybe the best that mothers like me can hope for is that a new generation of young feminist thinkers can see beyond the narrow discourse that dominates feminist conversations about serious mental illnesses. When I was exposed to and eagerly embraced feminism 40 years ago, I was liberated to challenge oppressive practices wherever I encountered them. This empowering foundation has been extremely valuable in responding to the chaotic situations which have occurred because my daughter has a brain disorder. I'm eager for a new wave of feminist academics to include in their practices both a science-based perspective in understanding the nature of serious mental illnesses and an interest in the lived experiences of the actively involved mothers who, at best, have been ignored.