Disability Rights Groups Should Accept Schizophrenia
Susan Inman
Parents like me have new reasons to be extremely concerned about the future of our family members living with schizophrenia. Disability organizations that have failed to advocate for what our family members need have become increasingly intent on pursuing policies, in the name of human rights, that will lead to worse outcomes. Even more people with these illnesses will be left untreated and then join the vast numbers who become homeless, victimized and incarcerated.
In recent weeks, the US Democratic Party’s platform and the Council of Canadians with Disabilities have both announced their intentions to push the US and Canada to fully endorse the UN Convention on the Rights of People with Disabilities (CRPD). Though this document endorses helpful policies for many groups, it is disastrous for people living with schizophrenia and other psychotic disorders. The official Committee of the CRPD has ruled that people must always decide if they want any treatment. Since people are seen to be always capable, there is no need for “not criminally responsible” (NCR) defenses. Similarly, forensic hospitals that give people with mental illnesses a chance to recover, must be abolished. This means that extremely vulnerable people, who may have committed crimes while very ill, have to serve sentences in the regular prison system.
This CRPD stance on consent ignores a key feature of psychotic disorders. Psychosis is a condition where people become unable to distinguish between what is real and what isn’t. People with psychosis often have anosognosia, a brain-based inability to understand that they are ill, no matter how much “support” is provided. This is why they frequently refuse to access treatment.
Disability rights organizations can be proud of all they have accomplished. Many of these achievements are discussed in the inspiring, new documentary Crip Camp. The film traces the origins of this movement in the 1970’s and shows how their tenacity led to the passage of the landmark Americans with Disabilities Act.
However, though many people with disabilities have benefitted from these organizations, people with severe mental illnesses have been negatively impacted. This is because the voices of these people have been seized by the psychiatric survivor/alternative movement; these are people who believe they have been harmed by interactions with psychiatrists and medications that they didn’t need. They support a non-medical approach to all ‘mental distress’ and often deny that illnesses like schizophrenia are recognized as medical conditions or that they even exist. They support the idea that mental health services are best supplied by peers who are told they are experts because of their lived experiences.
These organizations seem unaware of the vast research demonstrating the benefits of anti-psychotic medications for people living with schizophrenia. This 20 year longitudinal study of over 62, 000 people in Finland diagnosed with schizophrenia has results disability rights groups need to consider. The study found that people who stayed on medications had a mortality rate close to half of those who didn’t.
My daughter and her friends have almost all needed involuntary treatment at some point. They do not want to be left in untreated psychosis in the future. People like them aren’t represented in these organizations. Many are like my daughter who struggles to manage the tasks of daily living. Anti-psychotic medications can keep psychosis away but these illnesses also involve other symptoms including well-researched cognitive losses that often begin long before other symptoms.
People struggling with these symptoms can’t begin to debate about the complex theories of well-established voices of leaders of these movements and their allies in academia. They frequently rely on family caregivers and families soon learn that they are not welcome to represent the needs of their family members. Families are often described as intrusive, overbearing and only interested in dominating their family member who could thrive if only the family member would step away.
Those who reject families’ voices in the disability movement seem unaware of the research demonstrating that people with severe mental illnesses do better if families stay involved. For instance, this study found that there are much better results when families are involved in inpatient care and discharge planning from hospitals.
In the name of protecting privacy, it’s just this kind of involvement that disability rights groups have blocked.
Disability rights organizations continue to present a skewed understanding of the needs of people with severe mental illnesses. In pursuing their vision of social justice, they have already made it almost impossible for families to help an ill family member receive treatment. The public can see the results of these approaches to social justice when they see people who, under the banner of free choice, have been left to suffer untreated on the streets and in shelters and prisons across the US and Canada.
Logic would seemingly lead disability rights groups to want public attention to be given to the suffering of individuals with such severe disabilities. Shockingly, it is these groups that protest when journalists and filmmakers try to examine the lives of these people.
The well-respected Boston Globe Spotlight team examined the dire situations of people with severe mental illnesses in Massachusetts in their series called “The Desperate and the Dead.” During the many months that the team published articles on this topic, the paper was inundated with comments from radical peer groups demanding that they stop writing about this population. The peers argued that the articles promoted stigma against them by focusing on people whose lives were spent cycling in and out of homelessness and incarceration. Finally a powerful peer group, which is funded by the Massachusetts mental health system, organized a protest in front of the Boston Globe offices, blocking access to their door.
Disability rights organizations have continued to organize into increasingly influential coalitions. Recently over 70 disability rights groups and their allies in academia wrote an article on Medium criticizing the documentary Bedlam which has been aired on the Public Broadcasting System. They felt that the film didn’t represent and can harm people like them whom they describe as psychiatric survivors and ex-patients with ‘mental health challenges.’.
Bedlam was made by psychiatrist/filmmaker Ken Rosenberg whose sister had schizophrenia. It profiles the lives of a group of people with severe mental illnesses in Los Angeles. Filmed over five years, Bedlam shows the ways a broken mental health system fails them. It provides a perfect opportunity for disability groups to learn more about the situations of people they are assumed to represent and it would let them see the results of the policies that they have fought and continue to fight to implement.
As an American-Canadian, I’m part of a network of people in both countries working to improve the mental health systems impacting our family members. We’ve come to understand the real dangers that disability rights groups pose. In British Columbia, where I live, our helpful Mental Health Act (MHA) is under a legal attack from the Council of Canadians with Disabilities (CCD). In laying out their case, Laura Johnson, one of the lawyers for the CCD says, “This law equates having mental health problems with being mentally incompetent to make decisions.”
Advocates for the attack on BC’s Mental Health Act don’t listen to people with psychotic disorders who make clear that at times these illnesses prevent them from making the decisions that will free them from the agony of psychosis. For instance, Psychology Today blogger Julie Fast, who lives with bipolar disorder, writes, “The concept of individual rights doesn’t apply to someone who is not in his or her right mind. We are not in our right minds when we are sick.”
The article in Medium, can lead readers to believe that the disability groups endorsing it have the authority to represent people with severe mental illnesses. If these groups want to earn the right to authentically represent the best interests of people living with schizophrenia and similar disorders, they need to make significant changes. These include:
1. Stop claiming to represent people with severe mental illnesses as you pursue policies that pose great danger to them. As you say, you represent people with ‘mental health challenges.’ That’s different.
2. Stop minimizing the symptoms and impact of these illnesses. Learn more about the state of knowledge about these disorders and the people who are struggling with them. Stop spreading the misleading notion, as you do in the Medium article, that all ‘mental health crises’ arise from “trauma, structural oppression and poverty.” Become open to exploring how implementation of the policies you promote have led to trauma, structural oppression and poverty; family caregivers can help you understand how this happens.
3. Recognize the catastrophic impact of the severe shortage of psychiatric hospital beds which your advocacy helped create. Even people who know they need help and want to access inpatient care voluntarily find that beds aren’t available or that they are discharged before they have had a chance to become stable. When people can’t get the medically based help they need, too often they end up needing access to involuntary treatment.
4. Start building alliances with family caregivers instead of demeaning and excluding them. Recognize that because of the severity of illnesses of some people they need to rely on family caregivers. Stop promoting policies that make it impossible for these families to find out crucial information about an ill family member. It’s impossible to help a person with memory problems get to a doctor’s appointment, if the family hasn’t been allowed to be informed about the appointment.
5. Recognize the views of people with illnesses who don’t agree with the stances you take. Though people with these illnesses don’t tend to write the kinds of academic articles that have proliferated in the growing field of disability studies, their opinions are available in the wider community and in the media.
6. Instead of protesting the efforts of journalists and filmmakers to call attention to the catastrophic situations of many people with severe mental illnesses, support these efforts and work to ensure that members of your groups and the public learn from these resources.
7. Learn about the many unmet needs of people living with severe mental illnesses and help people get these needs met. For instance, evidence-based cognitive remediation programs exist which can help improve the ability of this population to manage daily life. Mental health systems aren’t investing in them. Perhaps the reason peer leaders don’t advocate for these programs is because they require professional expertise in delivering them that is beyond the skills of peer support workers.
Disability rights organizations in the US and Canada have become quite politically savvy and exert a very powerful influence on mental health policies. They have every right to continue to speak on behalf of the ex-patients and psychiatric survivors who are in their groups. However, it’s time for them to acknowledge they don’t have the right to speak for people with severe mental illnesses. At the very least, they should stop promoting policies that hurt the people they are assumed to represent.
