Twenty-five years ago, I was worse than ignorant as I watched my younger daughter’s schizoaffective disorder emerge. My undergraduate (Swarthmore College) and graduate school education (UCLA) had left me dangerously misinformed about brain disorders like this. I had learned that labeling people who are just different was the problem and that insanity was a sane response to an insane world. Because this ignorance led us to look in the wrong places for help, we made choices that delayed the quick access to appropriate treatment that can lead to better outcomes.
When we eventually found our way to Fuller Torrey’s work (via the Menninger Clinic), I finally had a solid base from which to understand both my daughter’s illness and the wider social context in which it has continued to unfold.
This base has been and continues to be crucial in forming my ability to advocate around a variety of issues I think are important including in these two areas:
Need for Public Mental Illness Literacy
Canada, where I live, is like the US in lacking adequate public mental illness literacy campaigns. These campaigns could help families, schools, friends, people developing illnesses and the public in general have a better understanding of mental illnesses. This shared understanding can guide people with psychotic disorders to seek and maintain the treatment they need.
Instead, the focus is on fighting stigma. Unfortunately, these anti-stigma campaigns can actually make the situation worse. They often try to minimize or even normalize severe mental illnesses like schizophrenia if they even acknowledge them at all. Even if they admit that psychosis isn’t just another way of thinking, they never let the public begin to understand the various negative and cognitive symptoms that frequently persist in schizophrenia. These common symptoms are often significantly disabling even when psychotic symptoms are diminished through the use of antipsychotic medications. This lack of understanding of the severe impact of brain disorders like schizophrenia makes it much more difficult for families advocating for improvements to all kinds of services.
In the name of fighting stigma, many journalists and some in the public are too hesitant to acknowledge the undeniable relationship between untreated severe mental illnesses and violence. Fuller Torrey has been the leader in pointing out this relationship. Also, he connects the public’s exposure to this kind of disturbing behavior to the rise in stigma.
The recovery model, which has been widely adopted, is intended to inspire hope. However, it basically assumes that if people really want to get better, they can. This faulty assumption could be addressed through public education and this information might even influence the behavior of service providers who have too often been led to adopt this belief system. It’s easy to just blame people if they haven’t made much progress as they fall through the giants gaps in services that make up the mental health systems in both the US and Canada. And it’s hard for service providers to maintain the needed levels of compassion if they are targets, especially in hospitals, of abusive behavior. When staff are being trained to think that all people are ultimately capable of choice in their behaviors, it’s easy to promote early discharges of difficult patients who aren’t yet stabilized.
As well, the now over reliance on social determinants to explain all mental health problems contributes to a resurgence of family blaming when other common problems aren’t in evidence. This blame, which never disappeared, hurts people with severe mental illnesses; it discourages cooperation with the families that people with severe illnesses often need to rely on. Fuller Torrey’s work was the first place in which I found a researcher who firmly stated that parents don’t cause schizophrenia.
Improved basic mental illness literacy could help people understand their own illnesses. This is very important because there is a shortage of appropriate psycho-education for clients, especially in Canada. Previously existing programs in British Columbia have disappeared. At the same time, the messaging of the psychiatric survivor movement in the delivery of mental health services has dramatically increased. For example, one peer led, taxpayer funded study group linked to the rapidly expanding Hearing Voices Network in Vancouver focused on studying the ideas of people like Will Hall who encourages people to stop taking antipsychotic medications.
Appropriately trained peer workers can provide extremely valuable help in many ways to people with mental illnesses and to the broader efforts to improve services. The Treatment Advocacy Center’s extraordinary work in promoting Assisted Outpatient Treatment programs has been helped by people like Eric Smith.
However, the government funded organizations like SAMHSA in the US and the Mental Health Commission of Canada which have created standards for educating peers don’t require or even recommend any training on mental illnesses like schizophrenia. When these government agencies argue that they are listening to the peer community in creating these standards, they ignore the many people like my daughter and her friends with schizophrenia. People like them aren’t represented in the beliefs guiding powerful peer organizations. Neither are the beliefs and needs of the many high profile people, like Julie Fast, who lives with bipolar disorder and like Bethany Yeiser who lives with schizophrenia. These kinds of people aren’t included in the discourse and the advocacy agenda of the peer groups that fight to establish their own approaches to treatment. These approaches demean and misrepresent what the alternative movement dismisses as the “medical model.” Mainstream contemporary psychiatry, which clearly acknowledges the need for evidence–based psychosocial rehabilitation programs, produces the kind of research TAC helps publicize.
Need for Improved Legislation and
One of the ways that I’ve tried to support my call for improved psychosocial rehabilitation programs and supported housing services has been to point out that 1% of the population has schizophrenia. Suddenly in 2017, the U.S. National Institute of Mental Health (NIMH), which had been my source for this claim, changed its messaging. The NIMH then promoted the idea that only 0.3% of the population has schizophrenia. One of the many important contributions of Fuller Torrey has been his well-informed and very public attack on NIMH’s drastic reduction in the number of people diagnosed with schizophrenia. I finally had a way to understand and explain to others NIMH’s shocking numbers when Fuller Torrey and Elizabeth Sinclair pointed out that:
Individuals who are hospitalized, in nursing homes, in jail or prison, or homeless are no longer included in the measure of prevalence, which NIMH claims to now be 0.3% (3 in 1,000 adults). This decreases the number of people estimated to have schizophrenia in the US from approximately 2.8 million to 750,000.
Fuller Torrey and TAC have also played a central role in my efforts to protect British Columbia’s Mental Health Act that is under a current legal attack. It was on the TAC website that I first saw the research on anosognosia and this is what I continually reference to educate others. I notice that the alternative movement persists in denying the existence of this condition, since wider understanding of it challenges their interpretation of what protecting human rights means.
It is very troubling to me that social justice/human rights/disability rights organizations are the groups that pose the greatest threat to the safety of people like my daughter. It is the Council for Canadians with Disabilities that are the plaintiffs in the attack on BC.’s mental health act.
In the US, especially in New York and California, there are finally strong, well-informed efforts to acknowledge the existence of people NIMH refused to count and to support them in getting the treatment and services they need. I see the impact of TAC in the success of these efforts. Although there are too many articles undermining these efforts, I also see brave efforts, like in this editorial in the Sacramento Bee, which are confronting the human rights and disability rights groups opposing this much-needed help. Journalists should be encouraged to examine these groups that have unjustifiably claimed the right to represent people whose existence they basically refuse to acknowledge.
It’s tragic in Canada that there are rising numbers of powerful efforts to deny access to the kinds of treatment people with schizophrenia often need. Increasingly, streets in Canadian cities and towns and our prisons are filled with untreated mentally ill people. We don’t have the kind of national voice that TAC provides. I can only hope that Canada can stop importing the most problematic approaches to responding to mental illnesses with which the US has experimented. With the new initiatives we see across the border, we can hopefully look to the US for guidance out of this socially constructed catastrophe.