Politics of Health & Health Activism
Health activism has a long history that includes protests against factory working conditions in the nineteenth century; reproductive rights and women's health issues in the mid-twentieth century that encouraged self-empowerment and challenged medical definitions of disease; health in prisons; HIV/AIDS research funding in the twentieth century; and efforts to reform the US health care industries in the early twenty-first century. Many of the issues that affect health are deeply political and many medical problems require political solutions. Consequently, in modern industrial societies there is a history of politicizing health through health activism, exemplified by the women's health movement or, in the second part of the twentieth century, public and environmental health activism. In part, the expansion of activism has developed as the public’s trust in health and medical experts has declined, although medical and health practitioners are increasingly becoming health activists. Health activism is a broad term that encompasses a range of activities, collectivities, and foci.
Keywords: Biological Citizenship; Constituency-based Movement; Embodied Health Movement; Feminist Movement; Health Access Movement; Health Activism; Health Advocacy; Social Movements
Health activism has a long history that includes protests against factory working conditions in the nineteenth century (Freund & McGuire, 1990); reproductive rights and women's health issues in the mid- twentieth century that encouraged self-empowerment and challenged medical definitions of disease (Eckman, 1998); health in prisons; HIV/AIDS research funding in the twentieth century; and health care reform efforts in the United States of the early twenty-first century. Many of the issues that affect health are deeply political and many medical problems require political solutions. Indeed, the greatest determinants of health are social, economic, and political rather than strictly biological or physiological. First, changes in disease patterns are often as attributable to changes in social behaviors and conditions as they are to medical technology or interventions. For instance, Thomas McKeown's (2001) study of tuberculosis demonstrated that its decline in the developed world preceded the use of antibiotics or the Bacillus Calmette–Guerin vaccine and reflected instead an improvement in sanitation and living conditions. Second, differences in health status across geographical and social groups in the contemporary United States mostly do not result from differences in medical management but from determinants such as poverty, access to health care, education, housing, environmental pollution, transportation access, and nutrition (CSDH, 2008). Third, the social epidemiology of disease influences whether research on their causes, consequences, and potential treatments is funded. For instance, there was a delay of several years before the British and US governments allocated funding to research HIV/AIDS because of its initial emergence in already socially marginalized populations, among prostitutes, drug users, and gay men (Shilts, 2000).
Consequently, in modern industrial societies there is a history of politicizing health through health activism. In the United States and in the United Kingdom, for instance, the women's health movement in the second part of the twentieth century worked to make the politics of women's health visible. In the latter part of that century and in the first decade of the twenty-first century, health activism continues through a focus on public and environmental health issues. In part, the expansion of activism has developed as public trust in health and medical experts has declined. Yet also, perhaps in response to wider social participation in health politics, the medical profession is increasingly acknowledging the need to address the political and social dimensions of health, particularly the inequalities that shape people's access to medical and health care (Cwikel, 2006). Health activism is a broad term that encompasses a range of activities, collectivities, and foci.
Defining Health Activism
Health activism can be understood as social activism that entails collectively communicating the common interests of one group to others, with a primary focus on improving the health or health conditions of a particular constituency or on changing policies that affect the health care access of certain groups (Geist-Martin, Ray & Sharf, 2003). As Zoller (2005) puts it:
Initially defined in terms of efforts, often grassroots, to change norms, social structures, policies and power relationships in the health arena, health activism includes actions related to patient activism, health care reform, disease prevention, illness advocacy, physical disability, environmental justices, public safety, and health disparities in populations such as women, minorities, gays, and lesbians, among others (p. 341).
In Zoller's terms, then, health activism entails some challenge to the established health and medical order, as well as to those individuals in power who impact health (such as policymakers and medical regulatory and governing bodies). As such, health activism can be viewed as a form of social movement or as a health social movement (HSM), that is, as a form of collective behavior that may operate outside established political institutions, involving social networks with shared beliefs and using collective action and protest (Della Porta & Diani, 1999), as well as community organizing. As a form of social movement, health activism may be narrowly defined and target a specific health issue (such as breast cancer) or may be broader in scope and target public and environmental health issues that potentially affect all members of society. Similarly, health activism can focus on local issues (such as the contamination of local water supplies by toxic chemicals) or have a more global perspective (such as the transglobal spread of polychlorinated biphenyl, or PCBs).
Health activism stands in contrast to health advocacy, which focuses more on educating the public about key health issues within the established biomedical model of health, illness, and disease (Brown, et al., 2004). Moreover, Brown and colleagues note that health advocacy tends to rely heavily on expert knowledge in its development of education content and focus, whereas health activism is more likely to challenge medical authority and explicitly include lay perspectives on the health issue under focus.
In the last decade, health activism has increasingly focused not only on diseases and illnesses that affect particular groups (such as parents of children with attention deficit hyperactivity disorder, or ADHD) but also on public health and environmental hazards (Brown, et al., 2004), such as toxic waste and exposure to chemicals, or on expanding access to health care. There are many models of health activism and of public health activism in particular, which often differ in their organization and goals. Brown and colleagues characterize these differences in the following way:
- Health access movements are focused mainly on politicizing access issues, such as access to preventive services such as mammograms or cytological screening.
- Constituency-based movements focus on particular geographical areas or place-based communities that experience particular health problems that are or are perceived to be the result of inequalities.
- Embodied health movements are typically organized around particular disability and illness issues, such as HIV/AIDS or autism spectrum disorder.
Perhaps one of the most important types of health activism in the late twentieth century has been in relation to environmental and public health, most notably in relation to toxic waste (Szasz, 1994), air pollutants, and clean water. A range of health issues has been traced to toxic waste and environmental chemicals, such as chemicals that trigger asthma and those that result in hormonal changes and adversely affect fetal development (vom Sal & Hughes, 2005).
An early model of what might be seen as both public health and environmental activism in Britain, in the nineteenth century, was the Health of Towns Association. This group was formed to advocate for environmental public health interventions and emphasized clean air, water, and light as priority substitutes for squalor and disease (Berridge, 2007). The group campaigned through public meetings, articles, and lobbying to promote sanitary reform in the rapidly growing cities of industrial Britain. By focusing specifically on legislative change, the efforts of this group paid off, and culminated in the Public Health Act of 1848 (albeit by using a theory of disease that was subsequently disproved).
Not all environmental or public health activism focuses on legislative change. Instead, some focus on issues with local resonance, in what Brown (2004) refers to as constituency-based activism, which may take as its focus private corporations, politicians, and scientific experts and how they contribute to what particular constituencies (such as local communities) view as public health hazards (Law, 2008).
For instance, one study of constituency-based activism focused on a local community in Scotland that protested against the siting of mast antennae and ancillary equipment for a national police radio system on the grounds of its perceived negative health impact on the community (Law & McNeish, 2007). Local people, especially women, perceived health risks from the antennae that ranged from headaches and skin disorders to cancer. Consequently, they held public meetings to discuss these issues and encourage local community members to engage in protest in addition to writing press releases (communication media are important to health activists who use the media to both publicize their efforts and mobilize membership), and organizing public demonstrations. In response, the telecommunications industry tried to address local health concerns and present science to support their conclusions that there was little risk to the community. However, this response had little effect and failed to reassure the community, in part because of local mistrust of scientific experts. Indeed, as Cwikel (2006) observes, public mistrust of scientific and medical expertise helps to explain the expansion of public participation in health activism.
Yet science is a key resource for health activism and many activist groups rely...
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