By Susan Inman
American-Canadians like me can vote in American elections, and also in the primaries that select nominees. Now that Bernie Sanders has released his disability platform I’m hoping he doesn’t end up being the Democrats’ choice to run against Trump.
As the mother of a daughter living with schizophrenia, I’ve learned over the past twenty years how much Canada is influenced by American trends in mental health care. The controversial positions that Sanders has recently endorsed reflect beliefs that have become increasingly influential in Canada. These positions harm the people they are meant to help.
People new to thinking about the most responsible, socially just positions regarding mental health care might be very impressed by the language in Sanders’ platform. The platform teems with references to human rights and offers an array of services that would be available in a Sanders administration for people able to voluntarily make use of them. However, readers need to dig deeper into the controversial positions he’s adopted to understand why my American community of family caregivers are alarmed. Underlying these positions is minimization of the severity and nature of psychotic disorders like schizophrenia for most people who live with them.
Here are Sanders’ stances on three crucial issues:
1. Sanders believes that treatment must be voluntary.
Psychotic disorders at some points involve psychosis, which is an inability to distinguish between what is real and what isn’t. A common feature of psychosis is anosognosia, a brain-based inability of many people in psychosis to understand that they are ill. This is the main reason these people refuse treatment.
Too many human rights advocates refuse to acknowledge the existence of this condition. Policies ignoring anosognosia have had catastrophic consequences for people with psychotic disorders; people with untreated mental illnesses have increasingly ended up homeless, victimized, and in jails and prisons.
Sanders’ disability plan does reference the fact that 1 in 5 inmates has a serious mental illness. However, he insists that just providing more voluntary services will fix the problem: “As president, Bernie will fight to end the criminalization of disability, while also defending the rights of people with disabilities to make their own choices about treatment.”
Sanders narrowly limited the kinds of advocacy groups he listened to. He hasn’t listened to the many people, like writer Julie Fast, who are living with psychotic illnesses and don’t want to be left untreated under the banner of protecting human rights. Fast 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.”
Canada has been influenced by the same kinds of advocacy groups that have advised Sanders. Currently, access to both inpatient and outpatient involuntary care, available through British Columbia’s strong Mental Health Act, is being legally challenged. The plaintiffs are the Council of Canadians with Disabilities. Proponents of the court challenge argue that the use of involuntary treatment promotes the idea that people with mental illness lack capacity; it seems it is unacceptable to acknowledge that some people have illnesses that, at times, can interfere with capacity.
2. Sanders opposes reforms that would create desperately needed acute psychiatric beds.
The US has a statute, the Olmstead decision, which prohibits hospitals from accessing Medicaid funding if they have more than 16 psychiatric beds. Sanders supports the Olmstead restriction which has resulted in a massive shortage of acute psychiatric beds.
Canada also has too few psychiatric beds. Complaints from patients, family caregivers and mental health providers about the shortage of beds led the BC Psychiatric Association and the BC Schizophrenia Society to investigate the problem and issue a joint report with recommendations to address the shortage.
3. Sanders will continue to block family caregivers’ access to crucial information.
Sanders opposes the reform of legislation (called HIPPAA) governing privacy of information. This legislation means that families can’t find out if their family member is in a hospital, what plans there may for discharge (even if the person lives with them) and what follow-up care is needed. Research demonstrates that family involvement during inpatient care is key in helping patients access outpatient treatment.
Canadian families also struggle with privacy rules that hurt their family member. However, BC’s Mental Health Act allows clinicians to share information when it’s necessary for families to provide continuity of care.
I am part of a group of American families working to bring about a mental health system that offers the best support for people living with psychotic disorders. These families are much more organized and outspoken than similar groups that I am involved with in Canada. They have repeatedly shown me that it’s essential to educate political leaders about policies that offer the best help.
Over the past year, the Democratic primaries have provided opportunities to help candidates learn essential information about psychotic disorders and the many changes that could improve outcomes for this marginalized population. Kamala Harris, Cory Booker, Pete Buttigieg, Amy Kobuchar and other Democratic candidates have offered strong support for these sensible approaches. Members of our group found it impossible to engage Bernie Sanders who repeatedly ended conversations by proclaiming that a single payer medical system would solve the problems they tried to describe.
One member of our group is prominent writer Ron Powers whose memoir, No One Cares About Crazy People, describes the harrowing ordeals of both of his sons who developed schizophrenia. Ron lives in Vermont, Sanders’ home state, and wrote an open letter trying to persuade him to reconsider the policies he’s supporting. So far, we aren’t seeing changes in his platform.
If Sanders becomes the nominee, I will vote for him. I’ll hope that family caregivers can eventually get him to see that just spending more money won’t provide the help that’s needed. At least we now have other Democratic leaders who are willing to support a more informed and complex view of human rights.
Susan Inman is a Bridgeross author of the best selling book After Her Brain Broke:Helping My Daughter Recover her Sanity. She lives in Vancouver, BC.