THREE MILE BAY — Themes of resilience, heartbreak and hope have propelled Ellen Marie Wi…
When it comes to healthcare, Dr. William G. Bronston has a long history of seeking justice for all. Part of that life work is documented in his book, published last year, “Public Hostage, Public Ransom: End Institutional America.”
The book documents his three years at Willowbrook State School on Staten Island and how he was driven to document the public mobilization, media exposure, and federal court proceedings that ultimately led to the action that Dr. Bronston helped spark.
But as its title suggests, Dr. Bronston’s book goes beyond Willowbrook. The Willowbrook model, he says, is still with us and detrimental to our health care system. And that’s the main reason he published the book nearly 35 years after Willowbrook closed.
“Why now? Because we are at the pinnacle of crises in the United States regarding the unaffordability of health care,” Dr. Bronston, 83, said in a telephone interview from his home in Carmichael, California. You can’t buy health care. It’s not for sale. You can buy health care. And the health care system in America has been so subservient to corporate ownership and corporate control and so essentially pushed toward privatization, even though we have Medicare and Medicaid as public systems”.
In terms of medical care, Dr. Bronston advocates “100% safety for the general population.”
“The Willowbrook story is a story to look at the centerpiece of the costliest aspect of health care, which is institutionalization: congregate and segregated care,” said Dr. Bronston. “I’m not just referring to residential institutions. I’m talking about health care. Our society is essentially dotted with gigantic empires.”
For example, Dr. Bronston said that California has about a half dozen major medical corporations that he said essentially dominate the field of health care.
“As the system moves further and further towards privatization, to make health care unaffordable and unavailable, we find ourselves in a crisis situation,” he said.
The main remedy, Dr. Bronston believes, is universal health care.
“I have been very active throughout my adult and professional life in pushing for universal health care in the United States,” said Dr. Bronston. “This story is essentially a precursor to unconditional reality and the need for radical change in our medical wealth transfer, stigmatization and labeling – the medical delivery system that dominates our society. Everything is medicalized. What that means is that everything is monetized to the extent that in our system of giving a medical term, description of something, you can automatically bill for the problem. You can generate income by defining the problem as a kind of situation.”
He added: “So the book becomes a precursor story of the danger of the social and moral consequences of defining people as less than you and me, less than human, and putting people in a dependent and money-bound state. In the economy”.
That attachment to money carries with it a sense of fear, Dr. Bronston said.
“Everyone lives with a gut feeling that something is possibly going to happen and they may not be able to afford it financially,” he said. “They cannot count on society and their caring and merciful relationship with each other.”
Dr. Bronston worked at Willowbrook for three years and, as his book documents, he was a thorn in the administrators’ side for all those years. His advocacy began at the University of Southern California School of Medicine, where he was a fellow at Children’s Hospital Los Angeles with Dr. Richard Koch, who died in 2011 at the age of 89. “He was an early advocate for the institutionalization of the developmentally disabled, which was common in 1955 when Koch was appointed director of the hospital’s newly established clinic for the study of mental disabilities,” his obituary noted in the Los Angeles Times. . “The traveling clinics he created evolved into dedicated regional centers that allowed children to stay home with their families or live in a non-institutional setting.”
“My training was at the forefront of the field in the world, in terms of caring for children who were different,” said Dr. Bronston. “Dick’s whole position was to divert people from institutions by providing the family with massive interprofessional services.”
With that frame of mind and training, Willowbrook was a revelation to Dr. Bronston when he arrived in the spring of 1970.
“I was absolutely stunned,” he said, “because even the institutions in California, like the California state hospitals, weren’t as miserable and beastly as the Willowbrook experience.”
He said he was first assigned to what was “euphemistically” called the baby room.
“I immediately had 200 of the most broken kids imaginable,” said Dr. Bronston. “I was the only doctor who treated those 200 people.”
He writes in his book that while he was at Children’s Hospital Los Angeles, it had 200 beds staffed by more than 400 doctors.
“It was absolutely the other way around,” said Dr. Bronston. “There were no out-of-order notes. He didn’t know what was wrong with any of the children. I had two nurses and two ward workers, possibly three on a good day, for each of my four wards to care for 50 children on each of those wards who were absolutely devastated in terms of their medical and anatomical situation.”
He said he learned there was no treatment plan for Willowbrook residents.
“I didn’t really get that at first,” Dr. Bronston said. “It took me a year of struggle to really start to understand the reality of the situation. It was a slow learning process because I was there every day overwhelmed by clinical responsibilities and the routine that the system imposed on us that I didn’t question at first because I was new to that place”.
Willowbrook’s management formula was largely at the root of its problems, Dr. Bronston believes.
“The definition of the population was that they were chronically ill, intractable, progressively deteriorating patients, which is exactly what they were not,” said Dr. Bronston. “They were children and people who had a reality of development and a future. They needed to be in an educational setting and essentially needed to be freed from the medical problems that were there as a result of the lack of proper hygiene, care, medication, and lack of proper diagnosis that they were suffering under there. The place was violent and totally inappropriate for anyone regardless of the extent of their disability. It was the wrong model. It was a model of a medical model instead of an educational model.”
Willowbrook, said Dr. Bronston, “crushed and destroyed” its population for money.
“The only way to describe Willowbrook is that it was a source of revenue for that state to pay the mortgages on these giant buildings that were built,” he said. “The benefits of that were the high-end wages and benefits that came from setting up these places in terms of construction, the contracts that were left over for food, sheets, medicine, transportation and everything to support this gigantic public workforce – the social system. . — who was essentially hired to run these concentration camps. And they were American concentration camps. Now they are scattered. Now, we have small so-called nursing homes and assisted living that cover the entire country and our society.”
That’s a harsh overview, but Dr. Bronston said a universal health care plan is the remedy for what he sees.
“That’s why without a universal health care system, that’s essentially free at the point of service and individualized across the population and integrated into society so it doesn’t congregate, it segregates nothing in terms of managing people’s health care. people and their role. in society and the community, you are going to have these kinds of atrocities.”
Three Mile Bay author Ellen Marie Wiseman was finishing her latest novel, “The Lost Girls of Willowbrook,” last year when she came across Dr. Bronston’s book shortly after publication. Dr. Bronston received an advance copy of Mrs. Wiseman’s novel this year.
“By the time I got to the fourth chapter, I was so anxious I had to put it down,” Dr. Bronston said, adding that he finished the book. He is pleased that Mrs. Wiseman has been able to expertly use some of his ideas.
“We have become very close friends and her publisher invited me to come to New York to be with Ellen when her book comes out to stand shoulder to shoulder with her at book signings and media opportunities,” he said. . “She is a leading New York Times writer of celebrity books that is published in multiple languages. She reciprocally feels that the true story of Willowbrook is what people need to know about it. Synergy is a great honor. She is honored to be connected to the source of the true story and I am honored to be connected to someone who markets the story to the general public in a more accessible way than my documentary.”
Dr. Bronston’s book, self-published through Page Publishing, is a collage of different elements, from legal summaries and internal communications to photographs and newspaper articles. He copyrighted the book as a non-profit corporation. “I didn’t want the money to come to me through royalties instead of being able to redistribute it in terms of promotion.”
Willowbrook State School, which opened in 1947, closed in 1987 after legal battles and public outcry. Before that, in 1975, New York Governor Hugh L. Carey signed a consent decree ending the legal battle to improve conditions.
According to the National Council on Disability, an advisory agency to the US government, “Although the consent decree did not require the complete closure of the facility, it did establish that Willowbrook residents had a constitutional right to be protected from harm and required the state to take immediate action. steps to improve the lives of those who lived there.” The ordinance sought to “prepare each resident…for life in the larger community” and to place Willowbrook residents in the “least restrictive and most normal living conditions possible.”
“No one from the inside has really, personally, written about fighting for justice in these horrible places and how to deal with the ruthless, cruel, insensitive, ignorant and incompetent bureaucracy that is essentially the norm in these state systems,” said Dr. Bronson. he said.