The untold story of the struggle for disability rights in America
As I spoke with historian and journalist Phyllis Vine, I kept thinking of Howard Zinn.
This article first appeared in Salon.
The acclaimed historian is most famous for his 1980 book "A People's History of the United States," which almost unique among historical works of its time explored major events from our past by analyzing the actions of ordinary people — not just those of the rich and powerful. It also had the audacity to foreground those vulnerable people who were harmed by the rich and powerful, making them central rather than peripheral characters in the American narrative. In her new book "Fighting for Recovery: An Activists' History of Mental Health Reform," Vine follows in Zinn's footsteps by likewise using a ground-up rather than top-down approach.
The key difference is that, in Vine's case, the specific subject is disability rights advocacy in the United States during the late 20th century. The result is a text that takes one of the central mottos of disability rights activists — "Never about us, without us" — and effectively practices it as it endeavors to share the stories of those very same people.
"I was in graduate school at the same time that historians were discovering the voices of the people on the ground," Vine told Salon. "I learned that it was much more important to know what the experience of slavery was like not from high above from the white men talking about slavery, but from the actual experience of people who were in chains."
Vine added, "I came of age as a scholar during the women's movement."
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In "Fighting for Recovery," Vine shares the stories of patients and activists struggling with disabilities that include schizophrenia, depression, addiction issues and more. Starting in the 1970s and continuing over the following half-century, Vine — a former Sarah Lawrence College faculty member and founding member of the New York State chapter of the National Alliance on Mental Illness (NAMI) — traces the individual journeys of patients and reformers alike. While doing so, Vine finds an important narrative thread that unifies her work and allows it to make an important contribution to the historical literature.
Specifically, she identifies how the word "recovery" has evolved along with population conceptions of disabled individuals' rights. At first, the term was strictly used to refer to addictions, and was applied in a way that empowered medical professionals more than anyone else. Over the years, however, disability rights activists such as the Section 504 protesters in 1977 changed the game.
As far as [Reagan] was concerned, being hospitalized was the equivalent of going to some kind of a hotel. It was where people luxuriated.
"Recovery isn't either/or," Vine explained to Salon. "It's not like a broken bone. It's not like reducing high blood pressure. Recovery is a process. And it's a process that speaks to not only a political identity, but it also speaks to a personal identity."
It also, Vine clearly establishes, speaks to each individual's own unique set of goals.
"For some people, recovery meant they could resume life pretty much where it had been paused, in the midst of an education, a career, or a family plan," Vine writes in "Fighting for Recovery." "Most would learn how to chart a course managing their symptoms as they set out to achieve their goals; some would struggle more, take longer, and have to modify their goals and aspirations."
Even today, many medical professionals resist the idea that they should surrender control over what counts as "recovery," and instead rely on patients' own self-knowledge. Back in the 1970s, that task was even more monumentally difficult.
"It is initially something that represents a challenge to psychiatry and the medical model," Vine told Salon. "It finds problems in the medical model, which in effect is a model of control. It's a model that says we know best. People in recovery were challenging that because they were saying that what the doctors were saying, what the psychiatrists were saying, what the hospitals were saying, that doesn't fit me."
In another important contribution to the existing literature, Vine also shines a spotlight on people among the rich and powerful who are frequently overlooked as heroes for disability rights. For instance, while President Jimmy Carter is rightly hailed for his work on behalf of disabled individuals, his First Lady Rosalynn Carter is often cast over — and unfairly so.
"When we talk about Jimmy Carter, what we really have to talk about is the power, the moral authority and the commitment of his wife, Rosalynn, for whom this was not just an exercise, but a passion," Vine told Salon. She recalled how Rosalynn became passionate about disability rights before Carter's governorship in Georgia, during which time his cousin developed a mental illness and was sent to the Georgia state hospital.
"It's a model that says we know best. People in recovery were challenging that because they were saying that what the doctors were saying, what the psychiatrists were saying, what the hospitals were saying, that doesn't fit me."
"When he was governor, she approached her responsibility as the first lady of Georgia as having something to do that she found compelling, and she decided to work on improving mental health conditions in Georgia," Vine expressed with admiration. "By the time they got to Washington, she was really well prepared to assume the leadership of reforming mental health in America." This ranged from urging the president to heed a 1977 Government Accounting Office report saying the government had to do more to help people being dumped out of mental hospitals to pushing for legislation like the Mental Health Systems Act of 1980.
Yet once Carter had left the White House, America was left with a very different type of leadership — that offered by President Ronald Reagan. In true Zinn-ian fashion, Vine's book doesn't hesitate to rip a beloved American leader down from a pedestal in order to relay the facts.
"Ronald Reagan comes from an entirely different mindset as governor of California," Vine explained. "He made it clear that he did not have much regard for the needs of the Californians who were hospitalized in these vast overcrowded fire traps. As far as he was concerned, being hospitalized was the equivalent of going to some kind of a hotel. It was where people luxuriated. His appreciation for the lives of people with needs and wants was sorely compromised."
This spilled over to his presidency, during which he rolled back the Mental Health Systems Act, repealed laws and regulations to help disabled people and cut funding for programs that couldn't be outright eliminated. He did this because he viewed them "as not only unnecessary but as a gesture to people who are users, users of a system. He had all sorts of contempt for people with disabilities, people with needs other than he could understand, and that contempt was up and down the socioeconomic ladder."
Vine concluded, "Reagan threw the entire weight of the federal government into the road, blocking access for people with disabilities or mental illness."
