They Survived Byberry
Philadelphia State Hospital — the psychiatric facility colloquially known as Byberry because of its location at Roosevelt Boulevard and Southampton Road in Northeast Philadelphia — was almost Anna Jennings’ last stop.
Six years after her stay there, the pretty, blue-eyed 32-year-old would die by suicide in the back ward of a different state hospital. But her tenacity had not yet reached its end point while she was at Byberry, despite more than a decade in and out of institutions where she endured terrible abuses and erroneously prescribed treatments — some of which were so awful they’re now illegal. In fact, if it were not for Anna’s persistence, Byberry might still be in operation today.
Anna arrived at Byberry in 1984. She was 24. As a small child, she was sexually abused for several years. She didn’t tell anyone, but her demeanor changed from that of laughing, smiling and cheerful to angry, defiant and volatile. At the time — the early ’60s — her strange behavior was not understood as a reaction to the molestation she was suffering, and subsequent family problems aggravated the issue.
She was ultimately diagnosed with schizophrenia at 13 and started to cycle in and out of institutions across the country at the age of 15. By the time she got to Byberry, she’d hardly ever lived on her own, outside of the system.
The one constant in her life was her artwork. She was a brilliant artist even from the time she was a small child, and during the two years she lived at Byberry, it remained a huge part of her life. A conference sponsored by the hospital used one of Anna’s paintings on the cover of its literature. Staff commissioned and exhibited her work. Despite their praise, however, the staff continued to subject her to forced drugging, seclusion and restraint — and worse.
She wasn’t alone, of course. She saw terrible things happen to many patients — saw them beaten and pulled by their hair. She tried to talk to hospital administrators, but they wouldn’t listen. So she began to write down instances of patient abuse and sneak them out to her mother, who worked at the Mental Health Association of Southeastern Pennsylvania. Her anonymous accounts spurred then-Secretary of Public Welfare John F. White, Jr. to establish a Blue Ribbon Committee to investigate Byberry. And the results of that investigation were disturbing.
The report from the committee concluded, “The physical and clinical environment at PSH is conducive to and supportive of opportunities for patient abuse both by patients to other patients and by the minority of staff who too frequently engage in such conduct.”
The findings note an elaborate process for reporting abuse, but “a conspicuous failure to follow up on these abuse reports especially with those few employees who appear to repeatedly be the subject of such reports.” The committee found a “lackadaisical attitude toward patient abuse,” one that even people who worked there decried.
In a Daily News article published in 1987, an aide who worked at Byberry for 23 years was quoted as saying, “Oh, Lord, yes, I have cried, thinking how inhumane it was.” The article continues:
[The aide] was one of 39 hospital workers who last September co-authored a letter to officials pleading for solutions to a wide range of problems at the hospital, most related to overuse of restraints and seclusion. … Mental-health advocates in Philadelphia have said they began urging the Welfare Department to conduct an investigation last year after learning that a female patient had died of malnutrition.
Also, a report given to the state by a staff member of the Mental Health Association of Southeastern Pennsylvania, based on interviews with unidentified hospital employees, alleged that patients were overmedicated to compensate for inadequate staffing, put in restraints too often and arbitrarily, and beaten by staff members.
Other allegations included the pulling of teeth without Novocain and a physician so arthritic he couldn’t help a choking patient….
Because of staff shortages, the workers wrote, showering, shaving and changing patients’ clothes often was neglected….
During a surprise September 1986 visit, inspectors from the federal Health Care Finance Agency cited the hospital for a shortage of nurses. …They also complained about housekeeping: toilet paper was often lacking, rooms smelled of urine, floors were sticky, plumbing leaky and mattresses torn.
More than 500 patients were living under these conditions in 1987 and weren’t receiving adequate or appropriate treatment — when they got any at all. People were kept in restraints for days and weeks at a time; one man was kept in four-point restraints for more than a year. Once, while in restraints, Anna Jennings told a psychologist there that she’d been sexually abused — and he apologized to her because restraints are so traumatizing for abuse survivors. She was just one of many childhood sexual abuse survivors who were victims of institutional re-traumatization there. The question was: What could be done?
Anna Jennings had risked her personal safety to get important truths outside of those walls. Staff members had taken a brave stand. Secretary White called Byberry “the worst and most expensively run institution in the state’s mental care system.” Yet still there was a resistance to closing it. There were many patient families opposed to the closure, believing that advocates didn’t understand how severe their relatives’ illnesses were. There was rampant fear that the people who lived there — people like Anna —would wind up on the streets.
That didn’t happen. In fact, a Pew-funded study conducted by researchers at Penn that came out in 1996 showed that six years after the closure, former patients were faring well — thriving, even. One of those ex-patients is Danny Butts, who spoke at a recent celebration of Byberry’s closure. “I was one of the first patients that were discharged right before PSH closed — I was there for 12 months,” he said. A native Philadelphian, Butts remembers the culture of the state hospital as “people on the outside, people on the inside.” Now Butts lives independently and works for BHTEN, the Behavioral Health Training and Education Network. “We train and educate people who are going into the mental health field. I give them my perspective — where things were and where things are today.”
Where things are today is a country with many fewer state hospitals — a fact attributable to the Byberry closure, which served as a model for subsequent Pennsylvania state hospital closures like Mayview, Pittsburgh, and Harrisburg. The Byberry closure was a pioneering moment in transitioning people to community-based services. Philadelphia was the first city to close a state hospital and relocate residents to the community rather than to other institutions. But as with all endeavors that break new ground, the road to change was not always smooth.
BYBERRY OPENED AS AN independent institution called the Philadelphia Hospital for Mental Diseases in 1928 and was troubled by allegations of neglect and mistreatment almost from its inception. Like other institutions of its ilk, it served as a dumping ground for people who were different or disruptive to polite society: alcoholics, the homeless, “hysterical” women, those with epilepsy, cerebral palsy, and what was then called mental retardation.
Conditions were so notoriously awful for the 6,000 people who lived there that in the 1930s a photographer for the Philadelphia Record snuck in and took photos that showed just how terrible things were — water running down dormitory walls; urine puddled beneath beds; patients sitting on floors in soiled clothing because there were no chairs; overcrowded, dirty and dilapidated rooms.
Shortly after the newspaper exposé, the state took over Byberry and renamed it Philadelphia State Hospital. Despite new buildings and amenities like a bowling alley, the hospital was understaffed and neglect continued. Multiple attempts at rehabilitation failed to improve conditions. In the 1950s, 10 patients died as a result of neglect. Between 1960 and 1970, another 10 patients died, even though there were many fewer to monitor in the wake of President Kennedy’s call for community mental health resources in 1963.
Byberry downsized but didn’t begin the process of closure until 1988, a year after the initial Blue Ribbon Committee report was finished. It was closed for good in 1990. In the year before it closed, one patient committed suicide and another froze to death on the hospital grounds.
At the recent celebration of the closure, Estelle Richman, who oversaw the hospital closure starting in 1989, remembered the process as “the best of times and the worst of times.”
“It set the course of change for the mental health system in Philadelphia,” she said, but noted that it wasn’t easy before sufficient resources were in place. “Philadelphia had one of everything, but not enough of anything.” Midway through the closure process, advocates had been promised that the funding for Byberry would go toward patient care; in 1989 they saw a budget that allocated only $16 million — many millions less than was needed to care for people in the community. Two discharged patients died by suicide. Gov. Casey halted the closure, and another discharged patient died by suicide soon thereafter.
Between the budget problems and the deaths, the whole closure plan threatened to derail. But Secretary White, said Richman, was “a tough visionary determined to do the right thing regardless of the critics.” He knew it was the right course of action. And a group of people who’d previously been at opposite ends of the spectrum — including psychiatrists and former patients — formed the Coalition for a Responsible Closure to ensure that there would be sufficient resources available for patients leaving the hospital. They advocated for a budget of $50 million instead of $16 million — and they got it. Former patients filed a lawsuit whose settlement also guaranteed them funding for community services.
On June 21st, 1990, Byberry closed permanently and Philadelphia had an entirely new system of alternative care that was more cost-effective for existing Byberry patients, served more people and managed to provide jobs for Byberry’s employees. Patients who’d been in institutions for decades were living “outside” for the first time. One of them, James Price, spent five or six years at Byberry before the closure. “It was hard living there,” he told an interviewer in 1999. “I got in trouble there a lot. They would put me in seclusion and restraints and give me needles.” After he left, he moved into his own apartment, got a job with the Department of Sanitation, and became an active volunteer at his church. “I go to the park, do my own shopping and cooking. I see my mother, my brothers and sisters. I go to movies sometimes on Sundays with one of my friends. Sometimes my niece comes over and spends the night. She’s eight or nine years old. I make sure she eats: I cook for her or take her to McDonald’s or Burger King. That’s fun.” His life in the “real world” was filled with simple pleasures, and he lived it on his own terms — finally.
There are so many people like James Price and Danny Butts who left institutions behind and moved forward. They don’t necessarily broadcast this fact so people don’t know they’re out there. Who wants to tell people, “I used to be in Byberry”? Instead, people look at the failures of the mental health system and blame them, erroneously, on deinstitutionalization. The fact that some people with mental illness developed concurrent substance abuse problems and concomitant homelessness; the fact that managed care compromises access to hospital treatment; the fact that so many people with mental illnesses wind up in jails and prisons — these are not problems caused by closing state hospitals. And they certainly didn’t suddenly spring up in Philadelphia in the wake of Byberry’s shutdown. Underfunding causes many problems in the behavioral healthcare system, but so too do endemic problems like poverty and racism and social inequality.
“Community integration has been successful,” said Joan Erney, the CEO of Philadelphia’s Community Behavioral Health, at the Byberry celebration. “You can’t go through a closure and meet people who have lived their lives at a state hospital and not become a zealot. I’ve never had one person talk to me about wanting to go back. They talked about freedom and work and having control over their own destiny. We all want that. Why would we take that away from anybody?”
THE QUESTION IS, ARE we giving people the right resources to help them succeed? Does the system work? Anna Jennings’ mother, Ann, who has become a respected leader in the field of trauma-informed mental health care, doesn’t think so.
“How can you possibly improve a system that’s based on a false premise?” she says, referring to the idea that mental illness is a brain disease caused by chemical imbalances. “That model — where you’re told you have something that you’re going to have for the rest of your life, and you take medication — it’s just not working. I think the whole mental health field is in crisis.” The best you can do without scrapping the medical model and starting over, she says, is to make the existing system more humane, which is what her daughter, Anna, tried to do at Byberry.
“She was quite a fighter. She would get just furious and say, ‘This shouldn’t be happening.’ I’m sure she was frightened but… she just had a sense of fairness.”
Ironically, Anna’s most successful interaction with a mental healthcare professional was at Byberry. A psychologist finally addressed her sexual abuse history, diagnosed her with PTSD and took her off of many of the medications she was on. It was the first time Anna felt like someone was listening to her and really trying to understand what happened to her. Since then, Ann Jennings has been a strong advocate for seeing the whole person behind the stigmatized, “crazy” behavior.
“Most of this suffering is due to events that involve overwhelming stress for people,” she says. But with the reliance on the medical model, “people are deprived of opportunities to heal and to be seen.” She advocates for treatment modalities that ask people, “What happened to you?” rather than, “What’s wrong with you?” The psychologist who did that with Anna was so horrified by what he saw at Byberry, not only did he leave the hospital, he left the field entirely. But his positive role in Anna’s life demonstrates what a tremendous difference one kind, caring person can make.
There were plenty of caring staff members at Byberry, many of whom felt trapped by their own circumstances but cooperated with Ann and Anna in smuggling out information. Their courage, and Anna’s fearlessness, led to a new day in mental healthcare in Philadelphia. It is a great tragedy that Anna is not here to talk to people like Danny Butts and James Price — people whose lives she saved. Nor can she talk to the many, many others who will never know the horrors of state-hospital institutionalization because of the risks she took. I, for one, wish I could thank her. I live freely, in the community, without fear that I will one day end up at Byberry. I think she would be pleased to know that.
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