Social movements in health: an introduction

Health social movements (HSMs) are an important political force concerning health access and quality of care, as well as for broader social change. We define HSMs as collective challenges to medical policy, public health policy and politics, belief systems, research and practice which include an array of formal and informal organisations, supporters, networks of co-operation and media. HSMs make many challenges to political power, professional authority and personal and collective identity. These movements address (a) access to, or provision of, health-care services; (b) disease, illness experience, disability and contested illness; and (c) health inequality and inequity based on race, ethnicity, gender, class and/or sexuality. This introductory essay has three goals. First, we aim to explain why an entire volume on health social movements is warranted, by specifying the important analytical questions to be answered and by situating the volume in the midst of a growing interest in the topic among scholars from various sociological fields and even other disciplines. Second, we seek to offer an explanation for the phenomenon of health social movements generally, and more specifically what appears to be a recent growth in their presence and power in contemporary societies. We do this by noting the growing tendency across all movements to challenge authority structures, and by emphasising the ways in which HSMs challenge the authority of medicine, science, governments and corporations. Third, we further develop the concept of health social movements, and offer some conceptual tools that may be of use in reading the contributions to the volume, which we introduce in a manner that offers insight into the ways in which they advance our understanding of HSMs. In the last SHI Monograph, Health and Media, Clive Seale (2003) introduced the volume by pointing to the fact that media studies and the sociology of health and illness ‘stand at a distance from one another’. Seale used the Monograph as a vehicle to bridge that gap. The same holds true for health social movements: many medical sociologists have studied such movements without reference to social movement theory and literature, while social movement specialists rarely take up issues of health. Fortunately, we are seeing recent attention to health social movements that has the potential to reduce this gap. The Society for Social Studies of Science, in both the 2001 and 2003 annual meetings, had a stream of four sessions on the topic. Stemming from that 2003 stream, a special issue of Science as Culture on health, the environment, and social movements is now in press, edited by David Hess. The current volume editors were invited to lead a multi-session workshop at the American Sociological Association's Collective Behavior and Social Movements Section Conference in August 2002. A medical social movements symposium was held in Sweden in June 2003, with a resultant special issue of Social Science and Medicine on patient-centred movements, edited by Joe Dumit, published in 2004. A special issue on health and the environment of Annals of the American Academy of Political and Social Science, in November 2002, focused on the role of health social movements. Sociology of Health and Illness has published a significant amount of research on health social movements, and it is fitting that this volume reflects this tradition. In our recent article in this journal, Embodied health movements: uncharted territory in social movement research (Brown et al. 2004), we put forth our first attempt to systematise the study of these movements. Previous research has focused on individual cases of health social movements; we consider them as a collective group that when taken together have been an important force for social change. Scholars writing about individual social movements dealing with health have covered areas such as occupational safety and health (Rosner and Markowitz 1987), the women's health movement (Morgen 2002), AIDS activism (Epstein 1996) and environmental justice organizing (Bullard 1994). Other scholars, who focus more generally on changes in the health care system, point to the significance of these movements in medical history (Porter 1997) and health policy (Light 2000). Despite this significant body of research, scholars have not examined the forces that gave rise to the wide array of health social movements, nor carried out comparative analysis of these movements’ different strategic, tactical and political approaches. Generally, scholars have not explored the collective development and impact the myriad health social movements have had on public health, medical research and health-care delivery. We believe there is an analytical benefit to considering the origins and impacts of HSMs collectively, and this work is part of a larger project to integrate and synthesise this material. Why has this new class of health social movements emerged in the last decade? A central reason is that science and technocratic decision-making have become an increasingly dominant force in shaping social policy and regulation. Governmental and scientific demands for ‘better science’ in policy-making have become a significant and powerful authority used to support dominant political and socioeconomic systems. Through this ‘scient-ization’ (Morello-Frosch et al. forthcoming) of decision-making, industry exerts considerable control over debates regarding the costs, benefits and potential risks of new technologies and industrial production by deploying scientific experts who work to ensure that battles over policy-making remain scientific, ‘objective’ and effectively separated from the social milieu in which they unfold (Beck 1992). The end result of this process is threefold: First, scientists are asked to answer questions that are virtually impossible to answer scientifically due to data uncertainties or the infeasibility of carrying out a study. Second, the process inappropriately frames political and moral questions (i.e.‘transcientific’ issues) in scientific terms, thus limiting public participation in decision-making and ensuring that it becomes the purview of ‘experts’ (Weinberg 1972). Third, the scientisation of decision-making delegitimises the importance of those questions that may not be conducive to scientific analysis. All of these processes can exclude the public from important policy debates and diminish public capacity to participate in the production of scientific knowledge itself. The continuing advance of societal rationalisation raises the role of objective scientific expertise above that of public knowledge for most social issues. Ironically, however, the quest for better science to inform good decision-making is often a veiled attempt to hide the politicisation of the policy process (Weiss 2004). This has been recently demonstrated in the United States by the persistent opposition of the Bush Administration to the widening scientific consensus on the question of global climate change and its attendant ecological and human health impacts (Gelbspan 1997). The Bush Administration has extended such antiscientific actions to a wide range of issues that go against consensus held by scientists, and that purge responsible scientists from expert panels and replace them with industry supporters: revoking major elements of the Clean Air Act's regulatory regime11 The Clean Air Act, enacted into law in 1970, is one of the most central components of environmental protection in the United States. Its mandate for revision of standards every five years, based on new scientific data, has led to increasing regulation of air pollution, but the Bush Administration has sought to combat that process. , allowing high mercury emissions from power plants, allowing lead industry representatives on Centers for Disease Control panels to stall lead regulation, firing pro-regulatory officials who seek to enforce existing policies (Union of Concerned Scientists 2004). The extent of such actions is so great that 60 Nobel Laureates signed a protest letter in February 2004. In their efforts to counter this trend, health social movements have leveraged medical science and public health to marshal resources, conduct research, and produce their own scientific knowledge. Until recently, most health social movements have focused on expanding access to health care and improving the quality of health care. The latest emerging crop of HSMs, what we term embodied health movements (EHMs are discussed in greater detail below), are highly focused on the personal understanding and experience of illness, while often addressing some of the access concerns from earlier movements. EHMs have some notably different goals, strategies and targets from other health social movements. By using science to democratise knowledge production, embodied health movements can engage in effective policy advocacy and challenge aspects of the political economy, as well as transform traditional assumptions and lines of inquiry regarding disease causation and strategies for prevention. This emergence of EHMs has been catalysed by: growing public awareness about the limits of medical science to solve persistent health problems that are and the rise of issues and of scientific knowledge and the collective to participation in social policy and regulation. 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