By Wendy E. Parmet
Social movements can play an important role in promoting population health and reducing health disparities. Yet, their impact need not be salutatory, as is evident by the worrying success that the anti-vaccination movement has had in stoking fears about COVID-19 vaccines.
So, what makes a health-related social movement “healthy?” We need far more research about the complex dynamics and interactions between social movements and health, but the experience of a few health-related social movements offers some clues.
Political scientist Sidney Tarrow describes social movements as a form of “contentious politics.” In contrast to interest groups, they are “far more prone to rely on communicative strategies of information disclosure and media campaigns as well as disruptive symbolic tactics such as protests, marches, strikes, and the like that halt or upset ongoing social practices,” political scientist Michael McCann explains.
Social movements can affect health in multiple ways. Some press for policy changes that are not “about” health, but impact it, such as polices relating to policing or the minimum wage. Other movements focus on policies that relate directly to health. Like Stuart Blume, I will call these “health-related” social movements.
Precisely because of their contentiousness and the type of tactics they employ, health-related social movements raise questions that medical and public health establishments may find uncomfortable.
Frequently, such movements argue that those in positions of power and privilege (e.g., physicians, pharmaceutical companies, and public health officials) have failed to respect the interests, concerns and perspectives of disempowered groups. Starting in the 1960s, for example, the women’s health movement criticized the absence of women in clinical trials, and the paucity of choices available for women seeking to control their reproduction. The movement also asserted women’s own agency while decrying medical paternalism.
In the 1980s and 1990s, AIDS activists critiqued the biomedical research establishment, demanding more research into HIV treatments and faster access to those treatments. Just as the women’s health movement sought to focus attention on women’s experiences with health care, AIDS activists placed the voices of people living with AIDS in the center of the conversation.
Some health-related social movements form around victims or the relatives of victims who seek to convert their pain into activism. For example, Mothers Against Drunk Driving (MADD) initially comprised mothers who had lost their children to alcohol-related motor vehicular accidents. They insisted that governments had failed to take the problem of drunk driving seriously.
Similarly, survivors and families of victims of school shootings have pushed for stricter gun regulations. By providing a much-needed venue for community and meaning, such movements can serve as a form of social capital that supports the health of their members regardless of their impact on public policy.
The critical stance that social movements take toward public health and medical authority, however, need not lead to healthy outcomes. The danger seems to arise when a movement’s critical opposition to medical and public health authority morphs into disdain for the relevant science as well as a disregard of established scientific facts. This happens when a movement shifts from demanding that scientists and policymakers focus on new issues or consider previously excluded voices to rejecting the very idea of expertise. In effect, skepticism about the scientific agenda turns to nihilism about established science, ultimately giving way to alternative (or “junk” science) and conspiracy theories.
Today, scientific nihilism seems to be ascendant in both the anti-mask and anti-vaccination movements. Of course, not all who reject masks or vaccines are part of those movements, but those who are protesting COVID-mitigation measures are not primarily demanding more research into ways to control the pandemic; nor are they focusing on the need to include underrepresented voices.
These movements do raise normative objections to COVID-mitigation measures (seeing them as infringements on their freedom) for which science has no special authority. But in addition, they reject the scientific consensus as to the safety and efficacy of masks and vaccines. Many activists go further, rehashing conspiracy theories, such as the claim that the COVID-19 vaccines plant microchips into vaccinated arms.
In effect, instead of asking for a seat at the table, these movements want to dismantle the table. By so doing, they threaten to prolong the pandemic.
Although it may be tempting to dismiss today’s anti-mask and anti-vaccine movements as the foolhardy products of social media misinformation and a relentless conservative campaign against public health (perhaps epitomized by the anti-Fauci swag sold by Florida Governor Ron DeSantis’ PAC), progressives should recall that some movements they have supported have also had an uneasy relationship with science.
As social scientists have noted, health-related social movements on all sides of the ideological spectrum have employed the language of autonomy and patient empowerment while challenging the power of expertise. As Jeremy Paul and I have written elsewhere, this may have unwittingly paved the way for today’s post-truth environment, in which the information that your friend shares with you on Facebook about the efficacy of vaccines is given as much credence as the guidance offered by Anthony Fauci.
The social movements that advance health avoid this descent into nihilism. They manage to challenge authority without throwing out expertise and science. AIDS activists most famously achieved this balance by utilizing what ACT-Up called an “inside-outside strategy,” in which activists learned the science, so that they could become credible and influential partners. Other social movements have employed similar strategies, working to expand the construction of scientific knowledge without slipping into epistemological nihilism.
This critical partnership with, instead of rage against, expertise is sorely needed today as we struggle to expand the voices represented by and within science, while still benefitting from its capacity to help us overcome the pandemic, climate change, and the myriad challenges to come.
Wendy Parmet, J.D., is the Matthews University Distinguished Professor of Law and the Director of the Northeastern Program on Health Policy & Law at Northeastern University School of Law.