All posts by Emma P Milward

The Right to “Rights”: Conducting Illness and Response, Performing HIV/AIDS and Activism

In several of the class readings that touch on both anthropological and global health perspectives on HIV/AIDS and attempts to control and treat the disease around the world, a theme that arises again and again is the one of “rights.” There is, of course, the apparent “right to know” the HIV-status of someone in your family or community and the right to “know your rights” (Biehl et al., 93) in navigating the HIV-positive identity, amongst other “rights” that seem to illuminate a projected path of dignity after diagnosis, and dignity in disease.

Throughout my own work with patients who must navigate the social circumscriptions of their health statuses and health choices, I have encountered other “rights” that patients either seek to engage: the right to be ill, the right to their identity as it either transforms through illness or does not, and – in an amalgamation of the two – the right to be an ill person. The meanings of these can be nebulous, and certainly fluid between individuals and contexts of illness. They are, however, important to the development of an inclusive and thoroughly caring rubric for the protection of human health.

Since its recognition as a “distinct clinical syndrome” in 1981, HIV/AIDS and discussions about the disease have permeated public concern about health and captured the focus of international health objectives (Farmer, 60-61). Due to its prevalence in the public imagination about transmission, socialized mythologies have arisen, type-casting the apparently susceptible based on initial circumstances of visibility amongst HIV/AIDS victims. Members of the LGBTQ community, Haitians, drug-users, and people believed to be of a certain form and level of sexual activity where they may make sexual contact with these “types” of people (especially through “anal intercourse” [61]) are among some of the people who did, and still do, experience judgment and are inundated with concern (either personal, social, or both) about their HIV-statuses. Additionally, cultural pictures were painted with related assumptions about the lifestyles and habits a person susceptible to or diagnosed with HIV/AIDS enacts; these mythologies continue to reproduce themselves through certain tactics for sexually-transmitted illness screening as well as the marketing particulars of prevention and awareness programs. In Zimbabwe, Dr. Beth Barr reports that the stigma which links HIV transmission to certain behaviors, as well as certain frightening consequences of HIV/AIDS, repels people – particularly sexually active youth – from counting themselves among those in need of screening, protection, and possibly treatment. The co-production of a sort of HIV/AIDS-identity by 1) beliefs about the transmission and progression of the disease and 2) the moral valences of the behaviors believed to be responsible has driven people away from testing and treatment for fear of having to surrender their personhood in exchange for this frightening and unappealing identity (Mwakalyele, 2015).

In HIV Exceptionalism, Benton writes how, in Sierra Leone, there are established ways of appropriately disclosing one’s HIV-positive status, and, thus, how there exist established ways of appropriately enacting HIV-positivity. The performative value of disclosure of one’s status, as Benton discusses (67-88), represents a social process of transforming the identity of the person – from healthy to sick, from presumably HIV-negative to certainly HIV-positive, from one type of person to another type of person (Benton discusses the varied assumptions and cultural valences that orbit “HIV/AIDS” as it has been constructed in the social imagination) – that becomes inscribed on the the biological process of infection and disease within the body.

The social processes that hinge HIV/AIDS onto socially-projected information about identity and conduct, as well as that connect the perceived severity of the disease to equally severe, implicit moral allegations stemming from socialized fictions of AIDS etiology contort the social privilege of those experiencing the disease from all angles: there are intense personal, cultural, religious, interpersonal, public, and bodily sensations that follow diagnosis. The right to retain and mold one’s own identity in and through illness is squeezed through an apparatus of the “rights” of others “to know,” the consideration for the health of the community, and the urgency imbued in certain forms of disclosure. While disclosure proves a sometimes-useful tool to cultivate social support and build trust, it mandates a surrender of control over one’s own health information (Benton, 71), as well as a relinquishment of the way one may be perceived into a realm of public assumption and judgment, where one’s conduct, personhood, and legacy may be discriminated against, misread, and miscarried.

Negotiating a balance between the “rights” to community awareness of infection and the patient’s right to preserve their personhood in a climate of mythology and judgement circling HIV/AIDS may break down barriers of socialized illusions about susceptibility to transmission, and subsequently may not only strengthen prevention but also render every member of a community equal in sharing concern about HIV/AIDS transmission. Thus, each member of a community is called to responsibility in creating an environment of participation and proactivity to support the health of the whole community. Establishing a livable balance for those living with illness between the risk of stigma and the protection of others, reconstructing the cultural storytelling that once seemed to safeguard the uninfected, and cultivating attitudes of shared responsibility and equal susceptibility is integral to true protection, as well as fair and successful distribution of knowledge, prevention, treatment, care, and dignity. This, in my opinion, is activism.

 

Discussion questions:

  1. What concrete problems do you see with the stigma that underlies disease and the effectiveness of appealing to community awareness and/or delivering screenings, treatments, and care?

2. Is it possible to untangle the realities of transmission from the cultural etiologies and local beliefs that are important to respect when developing strategies for responding to infection and disease internationally?

3. What are the dangers of these sweeping cultural mythologies about transmission and susceptibility to disease, which inaccurately depict certain “types” of people as carriers from which the uninfected should distance and protect themselves? How might these forms of storytelling about disease create yet more inequality and prove damaging to overall health in a community?

 

Sources:

• Benton, Adia. 2015 HIV Exceptionalism. University of Minnesota Press.

• Biehl, João, and Adriana Petryna. 2013. When People Come First: Critical Studies in Global Health. Princeton University Press.

• Farmer, Paul. 1999 Infections and Inequalities. Berkeley: University of California Press.

• Mwakalyele, Ndimyake. 2015 Stigma, Complacency Threaten Zimbabwe’s Gains in HIV/AIDS Fight. http://www.voazimbabwe.com/content/stigma-complacency-threaten-hiv-gaings-fight/3013729.html accessed October 20, 2015.