Three advocacy role models worth knowing before National Schizophrenia Awareness Day, this July 25th.
Some words come with misconceptions before we have a chance to define what they mean. “Schizophrenia” may be the leader in this category. This Saturday, July 25, is National Schizophrenia Awareness Day. The awareness day was started in Britain by Rethink Mental Illness and now is kept on both sides of the Atlantic. Purple is the color, if you have something purple you hope to wear. The meaning of the day is simple enough: learn what the aspects of this brain disorder are, and meet someone who lives with it.
Schizophrenia affects around 24 million people worldwide, about one in three hundred people. It is a brain condition that often emerges in late adolescence or early adulthood, and is treatable; hallucinations and delusions are some common symptoms. A person carrying the diagnosis is far more likely to be hurt by someone else than to hurt anyone. And more than two thirds of the people experiencing psychosis never receive specialized care.
The second part of the assignment is the reason for this week’s post. We would like to introduce you to three people: a law professor, a builder of mental health advocacy, and a man with two million followers. Between them they cover three generations and incredible professional achievements. No stereotype survives contact with biography, so here are three biographies.
The Professor
Elyn Saks had a mental health crisis as a student, first at Oxford, where she had gone from Vanderbilt as a Marshall Scholar, and then at Yale Law School, where an episode ended with her in a hospital bed in restraints. Her diagnosis was paranoid schizophrenia. The prognosis, in her doctors’ words, was “grave”.
Far from a limited future, she became the Orrin B. Evans Distinguished Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at USC’s law school, and she holds a PhD in psychoanalytic science. For decades she kept the diagnosis to herself. In 2007 she stopped, publishing a memoir called The Center Cannot Hold, and two years after that she earned a MacArthur Foundation Genius Grant. She built the Saks Institute for Mental Health Law, Policy, and Ethics, a think tank whose work is positioned where the law meets the brain. Her TED talk has been watched by millions. As she says, “There are no schizophrenics. There are people with schizophrenia.”
Professor Saks is careful, whenever asked, to name what made her life possible: treatment that worked, people who stayed, and work that gave her days a shape. Nothing on that list is exotic. Every item on it is something a family, an employer, or a courtroom can extend or withhold.
The Builder
Brandon Staglin was eighteen in the summer of 1990, home in Napa after his freshman year at Dartmouth. A breakup, no summer job, a run of sleepless nights, and then something gave way: voices, and the terrifying sense that pieces of his brain had gone missing. A hospitalization and diagnosis followed.
What his family did next is an example to us all. They did not lower their voices around it. They endowed one of the country’s first university chairs devoted to schizophrenia research, at UCLA, and when his mother proposed raising money with a concert in the vineyard, the Music Festival for Brain Health was born. It has run nearly every year since the mid-nineties with the non profit One Mind growing out of it.
Brandon finished at Dartmouth and earned a master’s degree later. Today, he serves as One Mind’s co-founder and Chief Advocacy and Engagement Officer, where he chairs its Lived Experience Council and focuses on workplace mental health to help people who have been where he has been. His official bio ends by noting how he recharges: meditating, journaling, and walking in nature with his wife and dog.
Last week this blog wrote about the ethos of the elephant, that the herd will not leave a member behind. The Staglins are what that ethos looks like.
The Messenger
Kody Green’s story starts nearer to the courtrooms we often write from. Becoming justice-involved in court, with a drug addiction first, incarceration after, and a diagnosis of schizophrenia at twenty-one. “After my release from incarceration and my schizophrenia diagnosis, I thought there was nothing left for me,” he has written. “When I started sharing my story online, I did not think anyone would care.”
Two million followers found that they did. Under the handle schizophrenichippie, Green explains what hallucinations are actually like from the inside, walks viewers through sixty-second simulations of hearing voices, and answers the questions families are afraid to ask out loud. He trained as a peer support specialist, a recovery coach, and a suicide prevention specialist. He wrote a book, Minds Over Meetings, about mental illness in the modern workplace. He works alongside a service dog trained to help him sort what is real from what is not. And he talks about second chances nearly every chance he gets, being himself the compound interest on one.
What the Day Is Actually For
Put these three lives side by side and notice what they share. Not one of these people recovered alone, and not one of them was saved by willpower in the dark. Each had treatment that worked, somebody who refused to go anywhere, and eventually work worth waking up for. Recovery operates in communities of care.
So, wear purple on Saturday if you have it. And more importantly, retire the version of the word you may have inherited from our stereotype filled society, and replace it with a professor, a builder, and a messenger. Elyns Saks put the whole day into one sentence years ago, so we will let her close: “The humanity we all share is more important than the mental illness we may not.”
