The Politics of Health and Health Activism

Abstract

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

Overview

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 part 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:

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.

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.

Further Insights

Environmental & Public Health Activism

Perhaps one of the most important types of health activism in the late twentieth century was 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 on science, collaborating with scientists and medical experts to substantiate their claims. For instance, the antismoking campaign in the United Kingdom in the 1970s, Action on Smoking and Health (ASH), is a more recent, twentieth-century example of an activist organization using both the media and science to create and disseminate its messages to the public. Distinct because of its reliance on publicity through the media, ASH was also distinct from other constituency-based health activist organizations because it was founded by physicians rather than lay people. Moreover, its physician/science membership grew as it widened its alliances to include other professional organizations such as the Health Education Council, the British Medical Association, and the World Health Organization (Berridge, 2007).

In fact, health care workers such as nurses are increasingly involved in environmental and public health activism by politicizing the environmental health consequences of health care. For instance, the Luminary Project is a website that demonstrates how nurses are addressing environmental health issues by advocating recycling programs, medical donations to developing countries, and health care products that are environmentally healthy (Carpenter, 2008).

Health Access Movements

Health access movements focus on expanding access to medical care and health insurance, as well as on improving doctor-patient relations and addressing barriers to diagnosis, treatment, or preventive care (Zoller, 2005). For instance, chronic pain affects millions of people living in the United States, though many have little or no access to pain medications. Consequently, there are several activist organizations that promote wider access to pain relief through activities such as class-action suits, patient collectives such as Shelter from the Storm in San Diego, California, which provides pain relief (often marijuana) to chronic pain sufferers and staging public handouts of pain relievers (DeLuca, 2005).

Health access movements also try to influence or change public policy in order to improve access, as is the case with activism in relation to Alzheimer's disease (AD). Alzheimer's contributes to dementia and the Alzheimer's Association is the primary activist organization that focuses on increasing access to federally funded health care and long-term care for people living with AD (Steuernagel & Barnett, 2007). This organization relies on a mix of grassroots efforts (by sponsoring the Memory Walk in communities across the United States) as well as using the media via public health advertising campaigns (such as "Maintain Your Brain") and celebrity input to raise public and professional awareness about AD. Along with other Alzheimer's organizations, the association works as health activism in part by removing the stigma associated with AD, or, as Steuernagel and Barnett (2007) note, by humanizing AD through first-person stories that highlight the experience of living with and caring for those living with AD (p. 23). As a result of such strategies, the Alzheimer's Association has been able to expand and sponsor funding for researching AD, in collaboration with national organizations such as the National Institutes of Health, with the aim of expanding treatment options.

Embodied Health Movements

Embodied health movements that focus on disability issues or illness experience emphasize the human body and its vicissitudes, challenge medical/expert knowledge and practice, collaborate with health professionals in pursuing treatment or research (Brown et al., 2004), and use science to shore up their claims (Fitzgerald, 2008). Embodied health movements may also include movements that bring attention to changes in the body as a direct result of exposure to chemicals that have been shown to have toxic effects on the human body, such as PFOA and PCBs.

Biological Citizenship

Such activism develops through and relies on organized efforts to challenge knowledge and practice concerning the etiology, treatment, and prevention of disease but may also be viewed as a kind of movement organized around biological citizenship (Fitzgerald, 2008). Biological citizenship is a concept that developed to describe the demand for particular protections or special resources that "acknowledge biological injury and compensate for it" (Petryna, 2002, p. 4). Such injury may include radiation exposure in the wake of post-Chernobyl disaster, or exposure to toxic chemicals in domestic water, where harm to the community of Hinkley, California, resulted from exposure to chromium-6 through groundwater (as dramatized in the film Erin Brockovich). In the context of biological citizenship, "life acquires a new potential value, to be negotiated in a whole range of practices of regulation and compensation" (Rose & Novas, 2005, p. 442). In short, the notion of biological citizenship defines health as political, and collectivities increasingly organize around shared-bodily or corporeal-identities, such as parents of children with autism or breast cancer survivors.

Many activist groups that might be defined as embodied health activists are initiated to provide resources for families, practitioners, and scientists dealing with particular diseases or illnesses. Such groups engage with government organizations as well as with the public in raising awareness and providing information, as well as directly funding or sponsoring research into the particular diseases that affect their constituencies. At a collective level, such groups encourage research into treatment options and support a vision of medicine as beneficent and globally accessible. They rely on biomedical solutions to biological problems, but at the same time, also rely on the exchange of information between other parents with children who have similar disorders (Fitzgerald, 2008).

Discussion

While it is possible to identify groups that typify different kinds of health activism (constituency, embodied, access), in practice, there may be significant overlap between these categories. For instance, embodied health movements associated with disability or AIDS are also focused on health inequalities between different social groups in relation to disease diagnosis, treatment, and prevention (Zoller, 2005). Similarly, the women's health movement (credited with democratizing health issues), is an example of health activism that takes many forms and draws on personal experience and science to challenge medical practice and knowledge directly as well as wider, often economic, interests that have an impact on women's health.

Medicine & the Women's Health Movement

From the late 1960s feminist activism and scholarship challenged the ways health was defined in the language of biomedicine. For instance, feminist researchers have shown how biomedical texts and language describe the female body in negative terms, in comparison to a male body as the norm for all bodies (e.g. Schiebinger, 1987). Women's health activism rejected these expert constructions of the female body as deviant and noted the general tendency in medical practice for women's experiences and knowledge to be disregarded by practitioners. Instead, they insisted on acknowledging the embodied experience of health and health care and focused on promoting the health of women in more holistic terms. Research began to refocus on women's experiences of those aspects of embodiment defined as pathological, such as menstruation, pregnancy, and menopause.

For instance, women had invariably reported in studies that common procedures associated with reproductive and sexual health are often accompanied by a sense of violation and discomfort (e.g. Kitzinger, 1992). These kinds of indignity are typically provoked by the practices and techniques used by medicine to visualize the body, which can have the effect of objectifying the body or body part at the expense of the woman who is being examined (Howson, 2001).

Therefore, the emergence of the women's health movement, the development of body consciousness, and the publication of radical texts such as Our Bodies, Ourselves (Phillips & Rakusen, 1978) placed particular emphasis on self-knowledge. Many feminist critics argued that acquiring knowledge of one's own body was vital to challenging medical culture and its problematic definitions of female embodiment. Self-help involved "learning the language of the professional" (Ehrenreich & English, 1979) in order to challenge medical authority and enhance personal autonomy. Moreover, self-help, and later, health education and health promotion were important to feminist activists as a ways of challenging the medical model of health. They contributed to the development of alternative sources of information for women about various aspects of health and tried to be sensitive to the diversity of experiences and choices that women faced (Hastie et al., 1995).

The emphasis of this approach was to reclaim what was perceived as the authenticity of embodied experience through body conscious–raising groups (Ruzek, 1978), which encouraged practices such as cervical self-examination; the advocacy of "traditional" approaches to health and healing; and "well-woman" clinics (Gardner, 1982). For instance, the women's health movement quite vigorously politicized the cervix, and self-visualization was identified as an empowerment strategy that would enable women to "own" their cervix. Such knowledge could be used to challenge medical expertise and as such, represents a formal and informal collective challenge to medical policy and practice (Brown, et al., 2004). This can be seen as both embodied activism, because the women's health movement focused directly on embodied experience as well as access-oriented activism, because the movement also lobbied for better health care for women and more attention to diseases and conditions that specifically affect women.

Conclusion

For many people, health is inherently political because it is a key resource that makes it possible for people to be economically productive. For others, health is a political issue because there are systemic inequalities in access to forms of health care and, furthermore, some diseases and illnesses receive more attention from policymakers, medical practitioners, and research funding than others. Consequently, health activism can be seen as a collective response to health inequities at different social levels (e.g. community, legal, policy, organizational). However, there are different types of health activism, which vary in their approach, focus, and goals as well as their membership, which has been overwhelmingly comprised of laypeople.

Yet, although physicians have largely not been the founders of health activist organizations (with some key exceptions, such as ASH), there has been a concerted movement within medicine toward acknowledgment of the need to be more involved in the politics of health and in health activism. In one medical school, a curriculum has evolved that specifically teaches medical students how to advocate for "socially equitable health policies in the US health system" (Cha et al., 2006, p. 1325). Further, within public health, which relies on social epidemiology, itself drawing skills from not only medicine but also a wide range of other disciplines, health activism is increasingly encouraged. For instance, one recent text targeting health and medical practitioners (Cwikel, 2006) provides a model of "evidence-based" activism, that, in addition to collecting, analyzing, and using data to support public health change, encourages health practitioners to become involved in change efforts, because when people organize to confront health issues, they can have impact and contribute to social change (Keefe, Lane & Swarts, 2006).

Terms & Concepts

Biological Citizenship: Refers to particular protections or special resources that "acknowledge biological injury and compensate for it" (Petryna, 2002, p. 4).

Constituency-based Movement: Focuses 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 Movement: Typically organized around particular disability and illness issues, such as HIV/AIDS or autism spectrum disorder.

Health Access Movement: Focused mainly on politicizing access issues, such as access to preventive services or health insurance coverage.

Health Activism: Collective protest against and attempts to change existing medical and scientific practices and policies that are perceived to adversely impact health care practices and health outcomes.

Health Advocacy: Health promotion and education that largely works within established medical models of practice and care.

Health Social Movements: Collective challenges to health policies and practices that involve formal and informal organizations that develop over time and are often initiated through grassroots efforts.

Social Movements: Intentional, relatively organized efforts on the part of individuals and groups to either bring about social change or resist it within a society. Social movements typically operate outside established political institutions. Social movements may be narrowly defined and target a specific social issue or may be broader in scope and target fundamental issues within the society.

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Suggested Reading

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Epstein, S. (1996). Impure science: AIDS, activism, and the politics of knowledge. Berkeley: University of California Press.

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