The Cost of Being Psychotic in America
By Syrena Clark
“Stigma” is a term that has been tossed around a lot in the last couple of years. The concept that people with psychosis, and psychiatric medication and treatment, are stigmatized is putting it too mildly. People with psychosis are discriminated against. And discrimination kills.
People living with psychosis-people like me-are dying because we are being discriminated against by people who’d rather see us hurt than attempt to work with us and give us the decency and respect that should be accorded us as a human right. And nobody deserves to be assaulted or shot after they’ve reached out for help.
However, pulling the trigger of a gun is quicker than actually addressing these problems and creating solutions.
By the Numbers
Many people with disabilities are dying at the hands of improperly trained police officers. According to one study, an estimated 27% of people killed by the police have received a psychiatric diagnosis, but this figure may be as high as 81% if people with substance-use problems are included. People with psychosocial disabilities are by no means the only ones at risk; these concerns also extend to those with developmental and physical disabilities. But for the purpose of this essay, I will focus on violence against people with psychosis.
If you struggle with schizophrenia or schizoaffective disorder, as I do, chances are that you’ve been handcuffed at some point. Commonly people in the throes of a psychotic episode are handled with force as opposed to the care and empathy that should be expected of a professional trained in crisis intervention. This is especially true if (like me) you live in an underserved area such as rural Maine, with too few mental health professionals, or in urban areas, with a high patient-to-doctor ratio.
Misperceptions
I work in mental health advocacy and study public health at school. So, every couple of days I’m presented with graphic body-cam videos of people either dying or incurring serious psychological and physical trauma at the whims of police officers who may lack training and a thorough understanding of what a mental health crisis looks like. As someone who has had many such episodes, that can look really scary if you aren’t familiar with one. A person may seem violent or completely disconnected from reality. But it is important to remember that the vast majority of people experiencing psychosis are not violent, and numerous studies have documented that they are actually more likely to experience violence. It’s easy to see why it’s not so much stigma but real danger that holds us back from reaching out for help.
It’s also important to understand that during a mental health crisis, we don’t always have full control over our actions, so our behavior can often be confusing to people who don’t understand the ways in which psychosis can rear its ugly head. I often remember very little from my breaks from reality, and almost nothing from my manic episodes. Apparently I said things out of character and did things I wouldn’t normally do. For example, during my first experience with psychosis I often said disrespectful and hurtful things to my father and stepmother, but later did not remember having said them. Later on, I would be found wandering around with no real awareness of where I was or what I had been doing. On more than one occasion I would go on tirades about aliens, becoming erratic and confused, and was occasionally aggressive, a far cry from my typically quiet, shy personality.
Individuals still need to be held accountable, but understanding the perspective and reality of someone with psychosis might help society choose better ways to help people in the throes of a crisis. Was it right that I was treated with far less respect in these situations than what would be considered acceptable under other circumstances? No. So where is the outrage?
Worse for the Unhoused
Some 11% of people experiencing homelessness have a diagnosis of schizophrenia, with some estimates much higher, and half of those people lack any treatment or support of any kind. I myself experienced homelessness for a number of years, relying on friends’ couches or summer dormitories for my housing. Too many of us don’t have even that, living out on the streets while dealing with serious mental health struggles. We are people who should be treated with respect, dignity, and empathy, the things all humans deserve. But we are too often treated like animals, insulted or ignored. Many mentally ill, homeless individuals face frequent and reoccurring victimization, including assault and rape, with the lifetime risk for victimization falling between 75% and 84%. Additionally, many will be arrested and continue to cycle through jails, hospitals, and homelessness.
Worse yet, the life expectancy of a person who is both unhoused and has a severe mental illness diagnosis is roughly 28 years earlier than that of the general population. According to a study in JAMA Psychiatry, some of this mortality is related to substance abuse and higher rates of completed suicides. But much of it has to do with poor access to care and housing, co-occurring disorders such as heart disease, and other risk factors that often come with chronic homelessness. This type of neglect is its own type of violence.
The Risks of Dialing 9–1–1
During my last crisis, which was years ago when I was still unstable, my partner placed an emergency services call. But instead of the paramedics we expected, two police officers showed up at the door and shortly thereafter they loaded me into the back of a patrol car.
What I didn’t know then is that I could’ve been killed that night or hauled off to jail instead of being brought to the emergency department. As a white paper by the Ruderman Foundation, a nonprofit supporting disability rights, put it:
“[T]he most common type of killing: An individual enters a mental health crisis, acquires a weapon (from firearms to household implements or tools), and is shot by law enforcement…A report by the Portland Press Herald found 42% of all killings between 2000 and 2011 involved mental illness. The San Diego County Attorney’s Office studied all officer-involved shootings from 1993–2012, 358 cases total, and found that 81% [of victims] had a mental illness, were impaired by drugs, or both. U.S. Department of Justice studies of Cleveland, Portland, OR, and Albuquerque have each specifically discussed fatalities involving mental illness, though the studies have shied away from giving precise numbers.”
Why aren’t we talking about this? Police abuse has been all over the news for several years now. Yet, the only videos I see of violence against people with disabilities come from my own limited community of mental-health advocates.
In a poignant and notorious case that hits close to home, a San Francisco woman named Teresa Sheehan, who lived with schizoaffective disorder, had finally achieved her goal of living semi-independently. One day, her social worker, concerned about behaviors he considered worrisome, let himself into her apartment. Frightened, Teresa grabbed a knife. The social worker called the police to transport her to a hospital. When they arrived, Teresa became angrier and, according to police, threatened to attack them. They shot her half a dozen times and she nearly died, later unsuccessfully suing the city for violating the Americans with Disabilities Act. Sickeningly, there are many more Teresas who didn’t survive such encounters.
Many Other Harms
People with psychosis are subjected to many other, less obvious forms of violence. We are often met with a lack of available psychiatric beds when we seek them, excessively long ER stays, and dehumanizing treatment. In 2017 and 2018, for example, two Maine hospitals committed serious violations of federal law by deliberately turning away people who were seeking help for mental health crises, either by forcefully removing them or having the police escort them to jail and then deleting their records from their database. This atrocious behavior isn’t isolated, as many of us receive inadequate and dehumanizing psychiatric care during mental health crises.
I once went to the ER seeking treatment for an acute psychotic episode but was told there were no beds available. I was admitted overnight, but not to an actual room. Instead, I was left in a cubicle inside the ER with just a thin curtain dividing me from another patient, who was sick with food poisoning. Instead of being presented with a bed or other options the following day or even the day after, I was held in the ER for six days. I ate only egg sandwiches and was not offered a room, a shower, a change of clothes, or even a lick of privacy. I wasn’t even offered my medication; a dangerous omission considering the risks of suddenly discontinuing them. As ER patients rotated on the other side of that curtain, I remained.
After five days of this, I asked to check myself out because all the screaming, sick people, doctors rushing around, and lack of privacy were exacerbating my already distressed mental state.
I was told that if I left, I’d be sectioned under the Mental Health Act.
I felt trapped, and tried to hang myself with the curtain that separated me from my poor, unsuspecting neighbor.
After another day I went inpatient and I have never taken a nicer shower.
Although on the worse end of how I’ve been treated, this type of neglect and hostility is something I wasn’t unaccustomed to. Maine has few psychiatric beds, so long ER stays-averaging from a night to a couple of days, or even a week-are the unfortunate norm for many people seeking help here.
Poor treatment extends past the emergency room. Many inpatient stays were far from pleasant for me, as is the case for many people I’ve spent time within psych wards. Psychiatric patients are often over-medicated and neglected. I was once put on so much Risperidone that I made phone calls and had subsequent conversations with people that I have absolutely no memory of talking to. I’ve been forcibly sedated and seen many people treated the same away. Believe it or not, those white isolation rooms you see in movies are still used in some hospitals. I spent 30-plus hours in one once. The treatment was horribly unfair. I was seeking help; I hadn’t committed a crime. Isolation is never acceptable for psychiatric patients in severe distress and often makes matters worse. But it isn’t just Maine, and it’s not just isolation rooms. Many law-abiding people in mental health crisis are transferred to and held in jail for weeks, even years.
Seeking Solutions
As a person struggling with a noxious cocktail of psychotic symptoms and mood disturbances since my teens, there have only been a few things I’ve wanted, and I am comfortable saying I speak for all people like me when I ask for:
Respect, dignity, empathy, and being able to ask for help without being dehumanized or getting killed. And action. Things need to change.
We need more accessible treatment when we ask for it. We need police officers trained to handle mental health crises without pulling the trigger. We need enough crisis workers to be able to respond to the demand. We need more beds, and if not more beds, then a more appropriate way to accommodate and treat patients while they wait for one to open up. We need everyone to have a better understanding of schizophrenia and other psychotic disorders: Why not ask us? The way we are currently treating people with psychosis should be unacceptable, even illegal. We need change so that nobody else ends up homeless, in jail, or dead. We need change to be able to support the millions of people worldwide who all seek shelter from the same storms I live with. To quote the Ruderman Foundation white paper again:
“ Disability rights are civil rights. Disability rights are human rights and disability justice is intersectional. The needs of disabled people aren’t special. There is nothing special about not wanting to be shot. What disabled people seek are the same things (employment, education, access, consideration, respect, etc.) that non-disabled people likewise desire. The obstacles faced by disabled people, though, too often go unseen. The language used to report issues that confront disabled people-especially issues linked to injury and death-should reflect that disparate reality.”
Fighting “stigma” is all very well. But it’s time to start fighting discrimination and never stop.
Syrena Clark
Syrena Clark is a public health student at Husson University. She works for the Schizophrenia and Related Disorders Alliance of America (SARDAA) and Strong365. Syrena is a fiery advocate for other people who live with psychosis and mental illness diagnoses. Her work has been published in Vice and The Mighty, among other outlets.
Originally published at https://www.madinamerica.com on March 24, 2020.
