Landscapes of Activism

Joel Christian Reed

• Publisher: Rutgers University Press
• Year: 2018
• ISBN:
  9780813596716
• Topic: Medizin
• Subtopic: AIDS & HIV

AIDS activists are often romanticized as extremely noble and selfless. However, the relationships among HIV support group members highlighted in Landscapes of Activism are hardly utopian or ideal. At first, the group has everything it needs, a thriving membership, and support from major donors. Soon, the group undergoes an identity crisis over money and power, eventually fading from the scene. As government and development institutions embraced activist demands—decentralizing AIDS care through policies of health systems strengthening—civil society was increasingly rendered obsolete. Charting this transition—from subjects, to citizens, and back again—reveals the inefficacy of protest, and the importance of community resilience. The product of in-depth ethnography and focused anthropological inquiry, this is the first book on AIDS activists in Mozambique. AIDS activism’s strange decline in southern Africa, rather than a reflection of citizen apathy, is the direct result of targeted state and donor intervention.

1

Studying HIV and HIV-Positive Persons

HIV, as we have come to know it, is much more than a just a virus or infectious disease. Despite global efforts, it remains a sustained pandemic, and HIV is a term loaded with social and cultural meaning. Ever since HIV was “discovered” in the early 1980s, it has been at the center of medical and moral controversy. It has altered the world, forcing us to rethink science in everyday life, spurring divisions and revelations about what disease “is.” HIV has clarified some very important realities—namely, that we live our lives interconnected, among webs of circumstance, and within multiple networks of institutions, persons, and political negotiations that affect life directly, whether we like it or not.

This recognition of complex interdependency occurred first in scientific and activist circles and eventually in international concerns for global health. One main lesson—that HIV won’t just go away—is written in blood, with an estimated seventy million infections and thirty-five million AIDS deaths since the epidemic began (UNAIDS 2016). The virus presents as a biomarker for globalization and demonstrates how health is mutually and collectively shaped. HIV reminds us that living and dying are graphed alongside myriad other social relations, ones that overlap and coconstitute both tragedy and hope, depending on circumstances and who is willing to help. How much support people have, how much money, and how much access to information about their illness become important concerns to offset the effects of the virus. Conventional biomedical thought—that HIV is simply a virus and nothing more—seems either naïve or a reductionist assertion, imposing sanctions upon the more open social terrains capable of operating against this tenacious threat.

HIV, especially at first, highlighted a lack of sovereignty over our own bodies. There was no treatment, so the virus appeared unstoppable. Those who became infected were unable to dispute the inevitable disruption to their lives, unable to take back the territory they once had—their own cells and DNA—against an enemy barely known or visible. Even now with treatment, the virus, as one of the fastest known evolving entities, combats the drugs we design. So along with those personally affected, the global health community remains locked in a war with HIV. Because of what gets lost, the war metaphor, though overplayed, is an apt one. Apart from robbing our physical bodies and disrupting our dreams and futures, the virus has consumed the time and intellectual talents of many researchers, bureaucrats, philanthropists, charities, and politicians. We like to think now that the conflict is stable, yet on how people can best survive the virus and help others do so too, better data and guidance remain constant concerns.

Continual “war” and the need for more data are two dependable continuities, but there is at least one other: epidemiological and international development work continue to construct the “facts” of this disease so that the virus and its parameters remain politically and socially determined. HIV was not always called HIV, it changed names several times.1 Surveillance definitions were too narrow, then got expanded.2 Calculations and models estimating global and local burdens were modified in response to changing methods of data collection.3 CD4 counts and other thresholds for treatment were altered and grew more inclusive (Bor et al. 2017). These shifts were presented as part of a routine process, as trying to keep pace with science. But many were influenced by activist concerns, responses to mistakes, and legal actions.

The latest change that has occurred relates to defunding HIV-specific interventions, diverting funds toward states and their health systems. This too is presented as imperative, as a response to good data, yet consensus has emanated from the same sources as always—experts and governmental elites who, at least in Mozambique, have yet to keep many promises. Since “health systems strengthening” (HSS) began in Mozambique, HIV rates have risen, while prevention and knowledge about the virus have not (INS 2015). The lack of sovereignty now, the new war on AIDS, is a struggle over memory, past and future, which, like science and medicine, is open to negotiation. Like the virus itself, the history of HIV evolves quickly. It must be remembered; otherwise, we will not continue to get as far, as quickly. Other common infectious diseases have never captured the attention that HIV has—though maybe another will one day. For now, despite many claims to the contrary, HIV remains exceptional.

Anthropologists and social scientists have contributed to the HIV/AIDS narrative in a variety of ways. Approaches included mapping its social dimensions and the ways it moves within and through particular societies (Farmer 2006; Fassin 2007), performing research related to prevention or medical intervention (Green and Ruark 2011), and compiling testimonies and theories in the midst of crisis (Bastos 2002). Anthropologists have studied the response to AIDS in specific categories such as homosexuals (Brummelhuis 2004), drug users (Singer 2005), and women (Chase 2011). Social scientists have contextualized the epidemic in geographical contexts requiring a good deal of cultural introspection—for example, in Africa (Crane 2013), Brazil (Biehl and Eskerod 2009), and India (Hollen 2013). Anthropologists have engaged activist communities (Iliffe 2006) and the medical and public health professions (Pfeiffer and Chapman 2010). Researchers have explored sexuality and relationships in regard to the virus (Hirsch et al. 2010), debated its place in global capitalism (Petryna, Lakoff, and Kleinman 2006), and contributed to ethical discussions concerning methodology, theory, and practice (Parker and Ehrhardt 2001). These additions to HIV/AIDS knowledge were perhaps unexpected by the medical research community when social scientists initially became involved. Notably, anthropologists did not analyze only risk behavior. Instead, we told and continue to tell stories that otherwise would have never been brought to light.

An important aspect of the global response to HIV involves civil society reactions, which have impacts on various other fronts (Rau 2006). Influencing scientific investigation, the evolution of therapy, and the conception and implementation of policies at all levels was a loose “social movement.” Given its origins, it exceeded expectations and became an interesting feature of how the pandemic played out in almost every context. AIDS activism begs examination as a social movement primarily to understand how society handles an enormous medical problem. There are other examples of social reactions to large epidemics—such as leprosy (Plagerson 2005), yellow fever (Nuwer 2009), and cholera (Ross 2015)—but nothing on a scale similar to HIV.

What was different about AIDS activism was its origin among patient bases, which previously formed only sporadically and for much less stigmatized diseases. As AIDS activists drew on reference points already in use by similar support and self-help groups, such as those championing black power and feminism (Livingston, McAdoo, and Mills 2010), the nature of AIDS activism grew and became further politicized. Other blueprints, which helped AIDS activism evolve in this way, included resistance to racism and apartheid (Powers 2012).

People with AIDS (PWAs), as a social category subject to academic study, has roots in early AIDS activism and can be traced back to its initial articulation in New York City during the late ’80s and early ’90s (Chambré 2006; France 2016). The term was initially associated with identity politics and linked to the creation of the first groups of people that organized themselves around a seropositive status. The Gay Men’s Health Crisis (GMHC), the People with AIDS Coalition, and ACT UP helped facilitate community research initiatives through the lens of PWAs as a group open to targeted intervention. Awareness campaigns and community support initiatives gave rise to collaboration with government entities, scientific institutes, and pharmaceutical companies (Epstein 1996).

On the other coast of the United States, in California, parallel and similar institutions evolved in Los Angeles and San Francisco (Roth 2017). Project Inform came into being as an alternative to slow and ineffective medical investigations, especially the slow approval of drugs by the FDA, and led to splinter groups like the AIDS Foundation and the Healing Alternatives Foundation. Other urban centers benefitted from this proliferation of activism, most notably Boston, Washington, Philadelphia, Chicago, and Toronto, where sizable communities of ACT UP and similar associations of people with AIDS began demanding better services and medical attention. A few years later every state in the United States had some presence of AIDS activists and organizations. Countries in Europe, and Australia, developed their own versions (Carter and Watney 1997). These included the Terrence Higgins Trust and the Body Positive in London, AIDES in Paris, and Deutsche AIDS Hilfe in Berlin. On an organizational level, these groups expanded beyond linking sufferers with health services. Technical assistance for other groups and organizations just starting out became a focused mission, including the transfer of experiences through civil rights (rather than just gay rights), the language of democracy, and economic prosperity.

These models carried over in developing nations, the clearest example being South Africa’s TAC. However, in new democracies, where civil and postcolonial difficulties had lasting effects, the consolidation of activism was impacted. In less-developed countries, poverty limited the capacity for the organic growth of independent and outspoken groups. Languages of individual rights and citizenship took center stage, and activism grew in an environment of collaboration with development agencies and other external forces geared toward fighting the pandemic. A common human rights language was adopted under the influence of international institutions. African AIDS activism gained momentum mostly through claims for the human right to health care, positioning patients as vulnerable to world capitalist economics and states as failing or uncaring. This coalesced succinctly in TAC, where social activism combined with global humanitarianism with the common goal of providing medication to those with no access to it (Grebe 2011).

What TAC and African support groups inherited from prior activist tendencies included a preference for assistance programs, concepts of buddy systems, and personal, psychological, or practical guidance (Robins 2006). But in most cases, people’s needs could not be met only at the local level. Success was more quickly found in collaborating with umbrella groups, leading to the formation of national networks. In this way, old priorities were redefined and new ones created. The vocation of groups and the assistance they desired began to include home-based care (Kalofonos 2014), especially where general health services were deficient. Some groups became politicized, while others became subsumed as an NGO workforce or as labor for hospitals and the programs of multinational institutions.

In many cases, links with communities and accountability to the needs of patients ceased to be the main focus. Best practices were dominated by preexisting or imported programs of prevention. Safe sex forums, recommended modes of healthy living, and the testimonies of those living with the virus became a precondition for participation in activist circles and volunteer-type positions, where the possibility of obtaining small salaries garnered interest. Meetings and trainings became a forum for producing “patient-activists.” The possibilities of basic support groups, designed mainly for lay patients, got subsumed and became undervalued.

The African HIV-positive support group, therefore, inherited and was predated by imported conceptions of who an HIV-positive person was and what he or she should be doing. The word that underscored everything was resistance—to not having health care or access to medication or to being outcast from a meaningful social existence. Like early AIDS activists in America and Europe, who renounced the role of victim and a passive sense of being defeated, African support groups designed around political empowerment models gained momentum. These were held up as examples, much more so than less-visible groups, and subsequently supported by funders and outside organizations (Robins 2004). Such models renounced the simple role of “patient,” and required that people with the virus become specialists in their disease area. This involved contributing to scientific and medical practice and conversing in the language of international human rights.

Hence AIDS activism in African settings was a continuation of Western movements, including those focused on gay rights, women’s rights, and self-esteem (Hunter 2010; Beyrer et al. 2011). The language of personal politics was similar, as was the need for freedom from oppression. The expectation was that HIV-positive persons, rather than waiting to die from AIDS, would become their own advocates. Some authors claimed that HIV-positive persons were standing up for their rights as citizens (Jones 2016), while others showed that they had nothing else to lose (Chan 2015). In some circumstances—when communities, families, and friends are sources of rejection—embracing a new or alternative social identity is welcome as a means for health care and income. This option, however, was not available to all patients, particularly those less educated or those dwelling farther from urban centers. There were groups, and some members of particular groups, for whom the practical aspects of daily survival, income or livelihood, and generally coping with being seropositive remained of prime importance. The need for and importance of the support group—as an intervention and entity all its own—was never completely lost but unfortunately remained stunted and poorly developed.

Support Groups and Social Justice

Illness support groups serve as an indicator species. In places where they are unavailable or in decline, our environment (our “ecosystem”) is more damaged, the illness experience more estranged, and life undervalued. Where support groups proliferate, on the other hand, society tends to be freer and more democratic, mutual trust and confidence in public institutions is higher (Evans, Henry, and Sundstrom 2016). Support groups are a proxy measure for community affluence and empowerment. While ideally available to persons in crisis, to go searching for one is a very different experience in wealthier countries than in poorer countries (Kingod et al. 2017). A nation’s infrastructure makes a difference; so too does attention paid to an epidemic. As a crisis crescendos, snagging headlines and raising public outcry, support groups are expected to form, especially for a chronic illness or widespread malaise. It’s almost counterintuitive if they do not. Access to peer-to-peer counseling seems humane and natural and potentially very effective.

Take, for instance, the current scale of opioid and heroin abuse in the state of West Virginia (Caldwell 2017), where 86 percent of deaths in 2016 were attributed to drug overdose. Support groups are a big part of that response, especially in the face of floundering federal assistance. When science and/or politics fail to make a difference, resilient communities still do. Fostering the expansion of support groups and their maintenance, just as much as providing treatments or medical technology, therefore, entails a degree of ethical fairness. Support groups—their very existence and capacity to thrive—facilitate a process of decolonization and social justice. Insulated from politics and safe from shifting, sometimes divisive science,4 they may be better off.

A support group is composed of people with common experiences and concerns who provide moral and emotional support for one another. They fulfill several functions—educating each other, sharing their experiences, serving as mutual sources of strength. Support groups typically form around aspects of health that are difficult to address in clinics, augmenting conventional services and in some cases serving as an adequate substitution. A powerful example is Alcoholics Anonymous, a program that has proven more effective than medical approaches for curbing addiction and preventing relapse (Scott et al. 2017).

The “anonymous” model has taken on a life of its own. It has been reproduced for other rehabilitative purposes, including gambling, hoarding, overeating, and sex addiction. Different kinds of support groups exist to address not vices but psychosocial concerns. They are commonly created for problems like bereavement, depression, suicide prevention, posttraumatic stress, and divorce. Still others are formed for people with chronic illness, such as diabetes, dementia, and HIV/AIDS (as discussed here in depth). A central concern of Landscapes of Activism is why HIV-positive persons who benefit from peer counseling and emotional support don’t have access to strong support groups, especially in Mozambique and southern Africa.

Studies among support groups show that members are more knowledgeable than nonmembers about the causes and treatments of disorders, cope more easily with the difficulties they encounter, feel stronger, have less negative emotions, receive more social support, and are less anxious about their future (Bademli and Duman 2014). In social network theory, support groups foster access to resources, social influence, creativity and innovation, relational development, and collective action (Chewning and Montemurro 2016). The medical world consistently endorses support groups as an important source of emotional and practical support for patients (Hu 2017; Delisle et al. 2017). But despite clear benefits, the factors leading to their successful establishment and maintenance are not well understood. While community embeddedness, duration of existence, and frequency of interaction are all important variables to consider, there are few details on how people in these types of communities manage everyday life (Naoi 2017). In Landscapes of Activism, I attempt to contribute to this small body of knowledge through a highly contextualized study based in Pemba, Mozambique.

Working in developing nations, many anthropologists, including myself, have encountered only weak support groups operating in a constant mode of damage control. What draws patients into networks or groups in these cases is a subsistence crisis. The term “moral economy” has been used to describe support groups and other community interventions in Africa (Prince 2012), especially to illustrate how groups become infiltrated or influenced by outside forces. In this formulation, regimes of self-care are an imposition. Encouraging members to eat a balanced diet draws greater attention to hunger and poverty (Kalofonos 2010). Identities and ways of living conform to donor expectations, making groups more manageable, and fostering competition over scarce resources. Information given about HIV is sometimes perceived as manipulative, attempting to regulate sexuality, encourage condom use or abstinence, and inspiring people to “live positively” through disclosing their status to others (Benton 2015).

The ethnographic research I will discuss here does not challenge these assertions, but it does take them a step further. True, patient groups seem unable to escape biopolitical forces that draw them into NGO economies, converting them into just another programmatic intervention. But in addition, the effects of these same powerful forces convey through the concepts of political activism and advocacy, so that this too becomes a technique of neoliberal governance rather than of freedom and liberation. The support group, intended to ameliorate stigma, poverty, and feelings of powerlessness for the chronically ill, ceases to be as helpful when conflated with, or replaced by, civil society. A...