Defining health activism: from MADD to mad activists: health activism in the 20th century.

Health Activism in the 20th Century: A History of Medicine Symposium at Yale University School of Medicine in October 2010 highlighted a variety of issues concerning the social history of medicine, including race, gender, sexual orientation, and disability. A watershed moment in a burgeoning interdisciplinary field, this symposium could pave the way for extensive future discourse.

What does “health activism” mean? What makes an activist legitimate? Despite its label, health activism should not automatically be assumed to be progressive. Right-wing activist groups exist; for example, Mothers Against Drunk Driving (MADD) is often charged as a conservative activist movement, with no inherent contradiction. Of course, this depends on the specific definition of progressiveness: a “progressive” may not necessarily be progressive in all areas. Moreover, activists may not be “active” all the time.

These were some of the topics tackled and debated during the first Health Activism in the 20th Century: A History of Medicine Symposium at Yale in October 2010.

Announcing that “we are history pioneers,” Naomi Rogers, Associate Professor of History of Medicine and Women's and Gender Studies at Yale, kicked off the symposium, sponsored by the Section of the History of Medicine at Yale University and the Department of History at the University of Manitoba and which focused on issues such as race, gender, sexual orientation, and disability.

Conference organizers had put out a call for papers to present at the symposium. Esyllt Jones, Professor of History at University of Manitoba, commented on the strong response — 14 papers were presented — in a field that until recently received relatively little attention from scholars. About 30 participants, a mix of students and researchers from a variety of backgrounds, convened at this special junction of history, sociology, science, and medicine.

The papers presented by speakers from five different countries — South Africa, Britain, Mexico, Guatemala, and the United States — provided a strong transnational, cross-race dialogue and a critical look at large-scale activism history. Talks were divided into five moderated panel sessions, each expanding upon a different theme: women and health activism; psychiatry and mad activists; health citizenship and the new left; health activism and the research establishment; and role of statecraft in activism. Speakers had been asked to tailor their abstracts to a list of questions on the conference website of the Society for the Social History of Medicine [1]. Topics tended toward the modern 20th century, examining the trends and movements of the 1960s and onward.

Heather Varughese, a History of Medicine doctoral candidate at Yale, spoke on the Lincoln Collective, a grassroots program started in 1970 by two residents at Lincoln Hospital in New York City in response to a health care system that failed to serve its low-income patients [2]. Comprised of medical residents, community members, and hospital staff, the Lincoln Collective was strongly influenced by and emulated other community health-related organizations and “radical political groups” [3]. Mandisa Mbali, a Postdoctoral Associate in the History of Medicine at Yale, talked about human rights and medical innovation in South African HIV and AIDS activism. Mbali focused on the period from 1998 to 2003 and examined the shifting definitions of HIV and AIDS activism in post-apartheid South Africa under President Thabo Mbeki [4]. National Institutes of Health (NIH) Postdoctoral Fellow Todd Olszewski, who obtained his PhD in the History of Medicine at Yale, examined the relationship between health activists and the NIH as well as the history between biomedical researchers and activists and the underlying politics in scientific research. Other speakers addressed topics such as civil rights, pharmaceuticals, and cancer research.

Despite the diversity of the presentations, “the complex and fragmented internal nature of the activist movements” became a common thread, according to Esyllt Jones. It was clear that in addition to the struggle against outside forces, disputes within the activist communities brought about unintended consequences. As movements grew larger, it was common for disparate people to be brought together, and tensions sometimes arose between different classes or ethnic groups within the movement. Activist groups frequently contended with numerous internal power struggles. The activists might not be survivors themselves, and survivors and activists could have divergent visions. Tensions arose over issues such as the use of treatments. Heather Prescott, Professor of History at Central Connecticut State University, who examined the history of emergency contraception in the United States, said that while both were pro-choice, older feminism and newer feminism took opposing stances on the use of recent technologies such as hormones. The use of terminology also could be cause for conflict. Geoffrey Reaume, a Faculty of Health Professor at York University in Canada, who addressed the mad activists in North America in 1970-2000, spoke of the tension, both within and between groups, over claiming ownership of the term “pride” and the definition of “mad pride” [5].

Furthermore, “the gender issue could not be more front and center,” said Barron Lerner, Associate Professor of Medicine and Public Health at Columbia University. Nearly all the speakers addressed the issue of gender. Topics raised ranged from the gender roles that activists played, whether intentionally or not, to the gendered attacks that many activists faced.

What became a unifying theme across the podium was that activist groups were seldom monolithic entities, but often complex microcosms playing out the very social dynamics of a larger society against which they agitated.

As discussion turned to the various challenges that researchers faced, it was revealed that some of the movements could be quite guarded about their histories and internal structure, proving a challenge for scholars trying to get a more complete picture and better understanding. The benefits of being an outsider to a movement are obvious. There is increased objectivity, but at the same time, there are more difficulties gathering data, as Lerner learned in his attempts to gain access to the inner workings of MADD, something that was frequently denied.

Symposium participants brainstormed the tentative working definition of activism as “energetic advocacy in a civil society,” but it was generally agreed that having an exact definition was not paramount. Instead, the changes and underlying themes are the most interesting. These activism movements, unique intersections of scientists, doctors, patients, and others, are dynamic structures whose complex histories need to be preserved. The successes and failures of past health activism movements also could be used to plan strategy for movements today, and a majority of past movements prove the important role of science in communication as well as the need to make use of politics [6].

Due to its interdisciplinary nature, there are many approaches to understanding the history of medicine and gathering information. For example, some speakers ascribed a “law and order” approach. Others spoke of a public health approach, with an emphasis on the notion of governmentality. Still others favored a sociological and more schematic approach to data collection. Indeed, assessments of different methodologies could potentially provide much fodder for future discourse.

The symposium concluded on a high and hopeful note, with the possibility of collecting conference proceedings into a volume of transnational activism history and the expectation of future symposia. The broad consensus was that the symposium helped participants reflect on their current and future research in new and insightful ways.