ON OCTOBER 12, 1773, the first patient was admitted to the Public Hospital for Persons of Insane and Disordered Minds in Williamsburg, Virginia, the first North American facility of its kind. The governor, an Enlightenment man, had prevailed upon the assembly to create a place where "a poor unhappy set of people who are deprived of their senses and wander about the countryside, terrifying the rest of their fellow creatures" could, with the help of experts, reclaim their "lost reason." Over the next 100 years, the rest of the country followed suit, taking "lunaticks" out of cages in jail basements after Boston schoolteacher Dorothea Dix happened into one such dungeon in 1841 and launched a fact-finding and activism rampage that led to the establishment of 110 public psych hospitals by 1880.
About a hundred years after that, in 1977, my mother—Mark's second cousin—dragged her 16-year-old baby sister kicking and ranting into Woodruff Psychiatric Hospital in Cleveland.
The day my Aunt Terri had a psychotic break, she just appeared in my mother's backyard. The neighbor who was over babysitting my then-infant older sister didn't know how long Terri had been out there when she finally noticed her, but she'd been pacing back and forth, long and hard and fast enough to wear a rut into the lawn. Raving in outer-space language. Flailing and swinging wildly.
"Do whatever you have to do to get her in the car," the general practitioner said when my mom phoned him, after the babysitter called her home from work. The doctor had asked my mom to describe the scene. He'd asked my mom if she'd ever seen anyone act like that on any kind of drug. He'd told her to hold on and he'd call her right back after he contacted a special hospital in nearby Cleveland, and now he was telling her she had to get her sister there by any means necessary. So my mom told my Aunt Terri that she would take her to the airport, because the only discernible thing that Terri was babbling about was that Chris Squire, the bass player of Yes, was sending her messages that she needed to meet him in Canada right away.
It took five white coats to contain Terri as she tried to scream and fight her way out of the hospital lobby. The admitting doctor didn't know—no one who saw her in the first months she was in and out of hospitals was able to decide—if Terri, straight-As bright and talented but a party girl, went crazy because she was doing drugs or if she was doing drugs to self-medicate symptoms of oncoming crazy. By the time I'd been born and grown old enough to understand what adults were talking about, it didn't matter. Aunt Terri was schizophrenic. Period. When I was younger, I was afraid of her. Or on some level, I was afraid of being her, more likely, of not being able to tell the difference between real voices and voices in my head, of being pulled so deep into my imagination that I'd never get out. When I was a teenager, I gave her rides home from family gatherings, but only after hanging back and hoping someone else would offer first.
Last year, Aunt Terri died in her yard. My Aunt Paula came to pick her up for the weekly grocery shopping and found her dead in the cold winter grass. This isn't as bad as it sounds, I tell people when that lands on their face as horror. It was, in fact, pretty much the best-case scenario. She died in her own yard, of her own home, where she lived her own life, young at 52, yeah, but not a terrible age for a body doused in antipsychotics and incessant cigarettes, giving out too early, but from the ever-desired "natural causes." Yet more and more these days, Aunt Terri's best-case scenario is an unlikely one. It took a lot of work, on the part of my grandma and Aunt Paula, and 23 years of dedication by a caseworker, work I didn't even want to do for a 15-minute car ride, work nobody wants to do, work counties and states are increasingly not paying for.
THE HOSPITAL my mother checked Aunt Terri into no longer exists. Neither does the state hospital, CPI—Cleveland Psychiatric Institute—that she was taken to later. Had it not closed a few years after her break, she may have ended up living in it for the rest of her life. But the changes in Terri's brain coincided with massive changes in mental-health policy.
In the 1950s, more than a half million people lived in US mental institutions—1 in 300 Americans. By the late '70s, only 160,000 did, due to a concerted effort on the part of psychiatrists, philanthropists, and politicians to deinstitutionalize the mentally ill. Today there's one psychiatric bed per 7,100 Americans. The motives behind this trend were varied, to say the least. Emptying the asylums was going to save money. Who needed asylums anymore, anyway, with all the great antipsychotics now on the market? Deinstitutionalization was going to restore citizens' rights and protect them from deplorable conditions popularized by movies and memoirs and often all too real. "We were totally creeped out," my mom remembers of walking into CPI to visit her sister. "It was exactly like One Flew Over the Cuckoo's Nest. People just sitting around talking to themselves and staring into space in hospital gowns"—a place where a sane person would go crazy and the crazy were unlikely to be cured. Wouldn't it be better if the mentally ill were treated at home, given support and therapy and medication via a network of community clinics? Anyone who visited even a "good" mental hospital found that message appealing.
My grandparents tried bringing Terri home. They weren't medical professionals, and for years she was in and out of the hospital as they struggled to get her to take her medication and to take care of her when she wasn't stable. Once, when doing the dishes with Aunt Paula after dinner, she smashed a frying pan into Paula's head, causing her to see stars and their brother to tackle Terri to the floor, the single act of aggression anyone ever saw him commit. Several months later, after she started a fight that ended with my grandmother's arm broken, she was moved to a group home owned by a nonprofessional but sympathetic woman in Madison, Ohio, 20-some miles from my grandparents' house.
The constant presence of other people continued to agitate Terri; within six months she was thrown out. Using Terri's Social Security income and Section 8 housing assistance, my grandparents got her a duplex in Painesville. She was evicted. She got another apartment, and was evicted again. Two more group homes in Cleveland, evicted. She would go door to door, "bothering" tenants. She would lie on the sidewalk in her bathing suit. And she would always, always, always be blasting music. Another apartment, in Mentor: evicted. With CPI long since closed by now, and hospitalization no longer an option, Terri was running out of places to go.
When in 1961 a joint commission of the American Medical and American Psychiatric associations recommended integrating the mentally ill into society, their plan depended on the establishment of local facilities where mentally ill people would receive outpatient care. Congress passed a law providing funding for these "community mental health centers" in 1963, and states, already under pressure from the patients' rights movement, downsized their mental hospitals faster than anyone had anticipated. Between Vietnam and an economic crisis and lack of political will, though, adequate funding for community services never came through. In 1980, Jimmy Carter signed the Mental Health Systems Act, aimed at filling the gap. But a year later Ronald Reagan, already known for eviscerating mental-health services as governor of California, took office and gutted it, then decreased federal mental-health spending 30 percent and shifted the burden to state and local governments. By 1985, the federal government covered just 11 percent of mental-health agency budgets. When the crucial community services that the mentally ill were supposed to receive as the hospitals closed failed to materialize, more and more of them ended up on the streets. By the mid-1980s, pretty much everyone in America agreed that deinstitutionalization was not going well.
"Homelessmentallyilldeinstitutionalized was one noun in the media at the time," says SAMHSA's Roth, who is the source of the oft-cited data point that a third of America's homeless people are seriously mentally ill (helping to rebut the misconception then that they all were). In 1984, Dr. John A. Talbott, then president of the American Psychiatric Association, apologized for the association's role in the disaster. "The psychiatrists involved in the policymaking at that time certainly oversold community treatment," he said, "and our credibility today is probably damaged because of it."
"Think of it as haircuts," says Roth, who watched deinstitutionalization unfold in her 37 years as chief of evaluation and research at the Ohio Department of Mental Health. "In the age of the great gothic castle on the hill, mentally ill patients had everything taken care of. Health care, sleeping, eating, etc. When they got out, they were supposed to have everything. They got Medicare and Medicaid, but [policymakers] didn't think about food. And haircuts. Clothes. How to find a place to live." How to do laundry; how to grocery shop. How to ensure people who need meds take them. What to do with people who had too many behavioral problems to avoid being evicted six times in a row.
Fortunately for my aunt, she lived in a state that, as Roth explains, had some "very dedicated, very dogged" leaders at the Department of Mental Health who were determined to make Ohio a model for post-deinstitutionalization life. By the mid-'90s, my home state "was famous all over the country for all kinds of stuff," she says. Independent-living initiatives. Supported-employment programs. Supported education. Home-based services for kids. Active and excellent case management.
It was an excellent case manager who ultimately helped solve my aunt's housing crisis. Eleanor Dockry, a tiny woman with chin-length black hair and black-frame glasses, was assigned Terri's case through Pathways (now called Beacon Health), a nonprofit outpatient service provider supported by the county Alcohol, Drug Addiction, and Mental Health Services (ADAMHS) board—essentially the rump of what was supposed to have been the community-services network envisioned by the reformers of the '60s—and a slew of other community organizations. Though I met her for the first time just a few months ago, she took care of my aunt for 23 years, a life jacket. Eleanor knew that you could only be evicted from so many places before no landlord in Ohio would rent to you, so she sat my grandparents down. "I think if you could afford to buy something for her, that would be good," she said. My grandparents pulled the money together for a trailer in a mobile-home community near their house.
"I have my own place," Terri bragged to my mother, beaming, at 36 years old. "Daddy bought it for me."
Terri smiles in front of her trailer home, which allowed her to stay independent. Courtesy of the family
Eleanor came by at least once and sometimes twice a week. She took Terri to her favorite restaurant, McDonald's, or to the park, or to go buy her nieces Christmas presents with money she saved from her Social Security check. (Terri liked to give me bubbles and sidewalk chalk, even when I was in college.) Every three weeks, Eleanor took my aunt to get her antipsychotic haloperidol injections, which Terri stopped refusing after my grandfather convinced her they were necessary for her own and everyone else's good. Eleanor took her to Neighboring, a local nonprofit, which offered field trips, skill-building lessons about cooking or doing laundry, and support groups about medication side effects, as well as art classes, the results of which were sometimes displayed in the local mall.
"She just had a few little problems" with neighbors once she was in her own place, Eleanor says. The rock music, of course. An obsession with hoses that made her turn them on and leave them on, flooding the driveway. "But since they owned it there's nothing they could do." She lived on her own for almost two decades. "She did better than you could really expect for someone so mentally ill."
So mentally ill: According to the National Institute of Mental Health, the term "mentally ill" can be applied to a whopping quarter of the US adult population in any given year, because broadly, it includes everything from depression to attention deficit disorder. "Seriously mentally ill," however, is used to describe severe functional impairments like major depression, schizophrenia, and bipolar disorder, which occur in up to 6 percent of the population. Within the severely mentally ill schizophrenic population (about 2.4 million Americans), my aunt—who constantly talked to invisible people, and got "pregnant" at 19 with Yes bassist Chris Squire's baby ("It always came back to Chris Squire," my mom says), her belly swelling realistically huge with his imaginary baby inside it—classified as low-functioning, making her about as mentally ill as a person can be. Still. With family and a few resources in place, Social Security checks and housing subsidies and a great caseworker, "she was able to manage on her own," Eleanor says.
At Aunt Terri's funeral, my family asked that in lieu of flowers, donations be sent to the mental-health organizations that made her life possible. We nieces who lived out of town and couldn't make it were instructed to honor Terri and her love of loud music by throwing ourselves a peace-disturbing one-person dance party at the time of the service, wherever we were. My grandma and Aunt Paula resolved to find a broke veteran (who turned out to be struggling with his own psychological issues) and to give Terri's trailer to him. My grandmother wanted to help other people needing help since the government had helped Terri. "She was independent until the very end," she says.
"I'm so grateful," she says, "that we had so much support."
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