Nothing to Hide
In his own life and the lives of others, Allan M. Brandt confronts the scourge of disease stigma.
In the early years of HIV–AIDS, Allan M. Brandt found a crisis that would be critical to his 30-year career as a historian of science and public health. At its worst, the overpowering stigma felt by HIV patients in the 1980s deepened their suffering. But, as Brandt notes, the story didn’t end there. Activism, innovative and relentless, rose up to meet the epidemic, contributing in time to treatment advances, expanded access to care, and, ultimately, the marriage equality movement.
“I spent that phase of my career really centering attention on AIDS and how historical perspectives could potentially inform contemporary AIDS policy,” says Brandt, the 2019–2020 Rita E. Hauser Fellow at the Radcliffe Institute. “I was highly aware of the stigma associated with sexuality, sexual identities, diseases associated with sex. I worked for a long time on stigma, and I had come to the realization that stigma is typically about focusing on issues of individual responsibility, blame, morality, and that it often inhibits excellent clinical care and effective public health.”
With those formative experiences in mind, Brandt is now seeking to investigate the character of disease stigma and strategies for fighting it. This work has inspired his Radcliffe project, a book titled “Enduring Stigma: Historical Perspective on Disease Meanings and Their Impact.”
“There’s a dual nature to the project,” says Brandt, who is on sabbatical as a professor of the history of science in the Harvard Faculty of Arts and Sciences and the Amalie Moses Kass Professor of the History of Medicine at Harvard Medical School. “I’m using historical and cultural methods to understand disease stigmas. At the same time, I hope to illuminate some effective approaches and policies that may lead to the reduction of stigma. Are there strategies for de-engineering stigma?”
The book will examine the role of stigma in conditions ranging from cancer to mental illness, obesity to disability. It has ties to an earlier chapter in Brandt’s life and research. In 2004, he testified as an expert witness for the Department of Justice in a civil racketeering case against the major tobacco companies, which were ultimately found to have committed fraud in their promotion of cigarettes to youth. Three years later, he published The Cigarette Century: The Rise, Fall, and Deadly Persistence of the Product that Defined America (Basic Books, 2007), in which he sought to reframe tobacco-related disease. The book was a finalist for a Pulitzer Prize.
“My hope was that by focusing on the range of forces that promote smoking, and especially the role of the industry, I could address this problem of blaming and stigmatizing people who got sick and often died,” says Brandt. “So, in many ways I’ve been investigating aspects of disease, responsibility, stigma, and causality throughout my career.”
Brandt’s work is also informed by his own experience as a cancer patient. In 2012, while serving as the dean of the Harvard Graduate School of Arts and Sciences, he was diagnosed with acute myeloid leukemia. His illness, now in full remission, has driven him to reflect on how much cancer has been destigmatized over the past 40 years. His access to experimental treatments, Brandt adds, can be traced to the work of AIDS activists who pushed to expand clinical trials for patients facing life-threatening illness.
“Everyone has a sense of what it means to feel shame or humiliation or guilt,” he says. “One hopes it’s a momentary or episodic event, but some are categorized into highly stigmatized identities. My illness experience has elicited a lot of sympathy and empathy: I don’t feel I have to hide my diagnosis or experiences. At the same time, I don’t want people to only think of me as someone with cancer. There’s no reduction of stigma without aggressive advocacy that becomes deeply integrated and forceful in the world of science and research.”
For the past two years, Brandt has used his research on AIDS, cancer, addiction, and other conditions to develop case studies for undergraduates in a course called The History and Culture of Stigmatized Disease. After choosing an illness to study from a historical perspective, students develop specific intervention proposals.
“Faculty often talk about the relationship of their teaching to their research,” he says. “When it really works out, and you can try out new ideas on students who are thinking critically in innovative and creative ways, it’s incredibly exciting.”
His cohort of Radcliffe fellows has provided a similarly rewarding intellectual space. “Some of my colleagues in the fellowship are exceptionally gifted artists who are now helping me understand and interpret the remarkable impact of artistic work which we associate with the AIDS epidemic and advocacy,” he says. “Regrettably, most of us typically talk with people in our own fields, but I’ve been able to benefit from the wide diversity of disciplines, methods, experiences, and approaches among my colleagues here this year.”
Jill Radsken is the associate director, editorial, for the Faculty of Arts and Sciences.