On a March evening in 1977, I walked my younger brother BJ into the emergency room of St. Luke’s Hospital on Manhattan’s Upper West Side. Snow was falling and people were brushing white powder from their coats as they barged through the fogged-up double doors of the glass vestibule. Like us, they gave their names to a nurse sitting behind a Plexiglas barrier.
The nurse glanced quickly at BJ. “Another one,” she shouted, looking behind her to nobody in particular. BJ was shifting his weight from one foot to the other, with a frothy half smile and vacant eyes, and reaching his hands deep into the pockets of greasy pants that had once belonged to a much larger person. BJ was in his late twenties and resembled people I had seen sitting under awnings holding cardboard signs scribbled with the word “homeless.”
Until the day before, I had thought BJ was in Los Angeles, where we’d grown up. Somehow he’d managed to get to New York City, clearly unwell. The doctors called his delusions, paranoia, and hallucinations “textbook.” That’s when I first heard the word “schizophrenia.” They said it was a “wastebasket” diagnosis. They then loaded him up with drugs to make him sleep.
“What will help him get better?” I asked.
“Nothing.” They were emphatic. “He’ll be this way for the rest of his life.”
“For the rest of his life?”
“Look around at the people you see on the streets,” the young doctor insisted.
Naive, or perhaps still a novice, that conversation shook my faith in medicine. So did BJ’s quick getaway, leaving against medical advice. Damn, I thought.
Thus began the future—his, mine, ours.
Time would cure the innocence I then had, including about psychiatry’s capacity to meet the challenge. It quickly became apparent that doctors did little more than abate some of the conspicuous symptoms while often forcing treatments that were oppressive and became custodial. They still turned to the American Psychiatric Association’s 1968 edition of the Diagnostic and Statistical Manual (DSM-II) which defined schizophrenia as “disturbances of thinking, mood, and behavior.” They led to a “misinterpretation of reality and sometimes to delusions and hallucinations, which frequently appear psychologically self-protective.” Later revisions may have been more specific, but they were no more successful in promoting treatments for BJ.
Nor was there the promise of recovery. The word “recovery” initially applied to people struggling with addictions. Now it is commonly used throughout behavioral health. It can include medication, psychotherapy, peer support, exercises in mindfulness, and accepting help from psychiatrists, psychologists, or social workers. Or none of the above. Recovery was nowhere to be seen when BJ most needed that framework.
Around the time BJ first struggled, people with lived experience brought recovery into sight. They lobbied, campaigned, and denounced expectations of chronicity and hopelessness common to the medical model. Then, in 1999, Surgeon General David Satcher announced that treatments for mental illness worked. He told the nation that recovery was real. Not only could he point to the work of grassroots activists, but there were also psychologists, social workers, and, to a lesser extent, doctors who agreed. It was a watershed moment. In mental health, the goal of recovery introduced hope, treatment, and research opportunities, and a revolutionary paradigm shift.
More than 20 years ago, recovery may have revolutionized goals with new ideals, but that was only the beginning. Change must deliver the apparatus with resources, programs, and a workforce. In 2020, according to the National Alliance on Mental Illness (NAMI) of the 14.2 million adults with serious mental illness, only 62 percent received mental health services; two-thirds of those experiencing a psychotic disturbance had to wait 6 months or longer for services. Emergency rooms currently board people in the hall, sometimes for days or weeks, where they are tied down to gurneys. Roughly half-a-million people are in jail or prison. Suicide, the tenth leading cause of death overall, is the leading cause of death for people between the ages of 10 and 34. And COVID-19 has doubled the number of people needing services, laying bare a system in need of vast improvement. We have work to do.
This is one of the reasons I’ll be writing “Fighting for Recovery.” I hope to share what I already learned in the process of writing a book with that title, and what I will continue to learn in conversation, with your tips, and by attending conferences and meetings focused on wellness, social justice, equity, and, above all, recovery.
Adapted from Fighting for Recovery: An Activists’ History of Mental Health Reform by Phyllis Vine (Beacon Press, 2022). Reprinted with permission from Beacon Press.
