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.

 

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

  1. Emma, thank you for your take on the “right to know” laws. One point that you mentioned, however, I would have to disagree with. The right to know the HIV status of someone in your family or community, to me, is not really a right. If that person in your family does not tell you that they are HIV positive, they clearly have some reason for not telling you. This is where doctor-patient confidentiality comes in. The doctor cannot tell anyone, unless the patient signs a form giving the doctor permission to disclose information to these specific people. Therefore, it is up to the patient to disclose the information to his/her family, and if they do not they have a reason and we just have to trust our family will tell us the important stuff when they are ready. I’m sure for some people it would be nice to know the HIV status of those around us because it is an infectious disease. What needs to be understood, which I think is very little understood, is that HIV is spread from direct blood to blood contact, or from sexual intercourse. I believe sexual partners have the right to know, for most other people, other than healthcare providers who may come in direct contact with their blood, it should not affect their lives in any significant way. I think of the major problems is that people are very uneducated about how HIV is spread and how contagious it is. If people do not know the truth, they will feel they deserve to know the HIV status of all of those around them whom they might come in contact with.
    I do appreciate your comments on the stigma or judgment still associated with diseases like HIV/AIDS. Although many of the original beliefs, such as HIV being a homosexual disease, have been disproven, there are certain things that still remain to be a source of stigma. Although it is known that HIV is not a disease only for homosexuals, because that was the original belief, the public still has not been able to move past that and still continues to judge anyone who they know has HIV, especially if they find out they are homosexual. This, as you mentioned in your blog post, also goes along with the “right to know” for people surrounding the patient. If a patient chooses not to tell, it will not be made public knowledge, so that could greatly reduce the risks of associated stigma. This might in fact be a reason why some people choose not to tell even their family, because they might not trust that their secret is safe.

    1. Hi Kelly,

      Thanks for your comment! I’m not sure if I articulated it very well, but instead of referring to the “right to know” as indeed a right, I meant to refer to the concept of the “right to know” in order to challenge the idea that “knowing” is, in fact, a right. I was more concerned in this post with the perception of disclosure as an obligation, since disclosure and community “knowing” invariably affects the illness experience, sense-of-self, and dignity-in-disease of the person who is suffering. I was mostly concerned in this post with how community anxieties and conceptions of social safety procedures intersect and distort the access that ill people have to their own personhood and identities.

      1. Emma, That makes more sense now. I’m sorry that I was misunderstanding your post. Now it makes much more sense to me. Thank you for clarifying.

        1. I was happy I could clarify! I tend to be a wordy writer and I think some of my ideas get tangled. Thanks for allowing me to make myself more clear!

  2. Hello Emma,
    I thought that your post was fantastic, especially because it touched on an issue that stems from the side of the recipients or potential recipients of outside care. Sometimes even when there are tools and resources available to individuals, people are concerned about what others will think of them for taking advantage of such assistance. I think that the first stage before increasing accessibility to care for certain conditions is removing negative connotations surrounding people who are affected by a particular condition. Although it is necessary to make sure that societies are accepting of those with certain diseases, we cannot wait for everyone to accept those with the disease before we take action and introduce the treatments to help people currently suffering from the disease.
    Changing societal perceptions and providing necessary assistance to disease sufferers should happen in parallel, as this approach will make sure people will not avoid treatment because of fear of being ostracized.
    To address your questions:
    1. I feel like even if we have created many solutions that are potentially effective at tackling a disease or issue, if people are stigmatized for having the disease, no number of drugs or interventions will be useful unless people are informed about the truths behind the causes of a disease and the people who suffer from it. Stigmas in society constitute a significant hindrance in the grand scheme of disease eradications.
    2. Cultural beliefs are often closely intertwined with the methods taken to address medical concerns. Oftentimes cultural practices dictate that those with diseases have been cursed or sentenced to a bad fate. While culture is a very important factor in how people lead their lives, shifting some elements of culture based on scientific knowledge, i.e. making sure people are aware of true causes of disease rather than simply subjecting them to ridicule as a result of their medical conditions, is critical to the process of successful medical intervention. I think that analyzing the social structure of a given community will yield the key to ensuring that an entire group of individuals will be willing to accept new ideas about origins of disease and the best way to address the condition in individuals. For instance, some societies rely on a chief or leader to make decisions for the whole group. If the leader can be adequately convinced of certain claims, it is possible that a more effective strategy towards reducing stigma can be established for that particular community or region.
    3. People with certain conditions will likely be subjugated and sentenced to a fate of being criticized for their “wrongdoing”, when in fact they are not at fault for the fate that has befallen them. Cultural ideologies can be quite dangerous because communicable diseases may go untreated for long periods of time because of the hypothesized origins of the diseases, and cause a greater subset of the population to be exposed to or affected by the disease. Additionally, disease could become more severe in individual cases if left untreated, and people would be left to deal with very painful and difficult situations if they remain ignored.

    1. Hi Shreya,

      Thanks for the response! I agree with your points, and I appreciate that you address the inextricable tendency between cultural belief and medical procedure, and also the scale of analysis and huge dimension of understanding and reform that might be necessary to turn around the ways we place blame, weight, and moral value on disease and healing.

  3. Hello Emma,

    Thank you for your post. It made for a wonderful read. I found your exploration of the stigma associated with a disease and the effects of that stigma really interesting. Your post got me thinking of issues in my home country, India, which have come about due to societal stigma. The two most striking problems that come to mind are TB and mental health. TB has been endemic in India for a long time and it causes several deaths each year that could have been prevented. One of the biggest problems with combating TB has been people’s unwillingness to get tested because of the stigma attached to the disease. In a lot of places, TB is thought to infect people with dirty habits and a ‘filthy lifestyle’. Because of this association, people who could otherwise be cured using medication end up not seeking help and dying. Mental health also has a similar story. In fact, a lot of people believe mental health to be worse than many infectious diseases and this outlook has turned mental health into a taboo topic, so much so that very few metal health resource centers exist even in urban areas. Social processes that create and perpetuate stigma are very damaging for any health care system. Turning to the last of your questions, I think sweeping cultural mythologies are dangerous because they restrict access to healthcare and resources for certain groups which leads to a disproportionate burden of disease being borne by such groups.

    1. Hi Harsh,

      Thanks for such a great response. I love the connections you give insight into as the ideas behind this discussion of stigma and access pertain to weighty health issues in your own country. The story you tell of TB testing and the social reasons people bar themselves (and, in this cycle, others) from testing is a wonderful, concrete example of why fear about disease and imagined etiologies are hurtful and actually do more to threaten the health of a community than to prevent it. I also appreciate your connection to mental illness, for the same reasons, but also because of its imagined permanence and the lack of understanding that people have about it which affects those who may need help but cannot tell if they deserve it. For instance, in my experience reading about anxiety, dysthymia, and depression, many people are reluctant to research the severity of their pain and seek help for it because of cultural beliefs about emotional weakness. Additionally, I’m reminded of the Benton here, as I think a lot of people who do not know much about mental illness and available treatments might, in the ways that HIV-positive people once viewed HIV, view a mood disorder or mental illness as a sort of death sentence (as in it will cause them pain for the rest of their lives, and if it is given a name and diagnosis, it might become more real). To wrap it up, thank you for bringing these concrete examples into the discussion… there are a lot of layers here!

  4. Emma,

    I enjoyed reading your post and I think you raise some really valuable insights and questions around the rights of HIV-positive individuals and of all ill people. First, your discussion of rights related to HIV/AIDS as well as the discussion of rights in When People Come First made me question why the rights of patients are invoked so much more when it comes to addressing HIV than with other diseases. Why is the rhetoric of “rights” so much more prevalent around HIV than around other diseases that are equally fatal and unpleasant? I wonder if it is because of the extensive “cultural mythologies,” as you put it, and stigmas that circulate with HIV in communities. HIV is very often tied to judgments about moral character and sexual promiscuity, especially of women. Patients of HIV are often seen as having personal responsibility for their sickness as illustrated by the 4 Hs (homosexuals, heroin-addicts, hemophiliacs, and Haitians) that were articulated in order to place blame on certain groups of “morally lacking” people for the spread of HIV. Maybe these oppressive cultural perspectives lead to a more pressing need of HIV interventions to dignify the experience of living with HIV. Heightened attention to the rights of people living with AIDS is a way to re-humanize people and dignify their experiences.

    Second, your discussion of the identity transformations that take place throughout the course of diagnosis and treatment of illnesses is fascinating, and of course, patients will choose to incorporate their illnesses into their identities in their own ways. Yet as you point out, in Sierra Leone and other places, the social and societal expectations of people living with HIV have created norms of disclosure and treatment that, in a way, strip individuals of their ability to interact with their HIV-positive identity in the way that they choose. One notable exception is the very wealthy, who can choose whether or not to accept government and NGO support and resources, and thus can carve their own identities with respect to their HIV-positive status. I wonder if, through articulation of “the right to determine one’s own identity around HIV,” the focus that already exists around the rights and dignity of HIV-positive individuals’ could be harnessed in places like Sierra Leone to break down social norms so that patients have more personal choice in how they cope with their illness.

    Thank you,
    Mira

    1. Hi Mira,

      I really appreciate your expansion on this post/discussion, and I think you articulate really beautifully the mysteriously strong valences to HIV that aren’t always found with other diseases – and I would agree, the cultural mythologies around sexual behavior, its degree of appropriateness, and the consequences of that sexual behavior, make HIV (and other sexually-transmitted illnesses) an easy target for stigma.

      I also absolutely loved your phrasing, “the social and societal expectations of people living with HIV have created norms of disclosure and treatment that, in a way, strip individuals of their ability to interact with their HIV-positive identity in the way that they choose.” Shouldn’t compassionate and holistic care encompass giving patients choice regarding how they interact with their diagnosis, their disease, and their pain?
      I absolutely agree that this could make coping with an already painful and frightening diagnosis a bit easier.

  5. Hi Emma, I thought you made some incredible points in your article about how stigma plays an important role in how a person can view themselves and the world around them.

    With regards to your first question, stigma creates significant barriers with regards to access to care. In high school, I read a book called “28 Stories of AIDS” by Canadian journalist Stephanie Nolen. In one story, a woman living in Mozambique, threw her child at the wall when she discovered her child’s HIV/AIDS diagnosis. When a woman in Lesotho announced she was HIV positive, she was ostracized by her family and deprived of any care. The stigma associated with HIV/AIDS results in many people denying they have it in the first place- preventing them from seeking help and treatment. In fact, many men in the communities afflicted by HIV/AIDS do not even tell their partners of their diagnosis. This causes their wives to be infected, and upon their diagnosis, blamed.

    With regards to the second question, it is essential to respect local cultural beliefs when developing strategies for responding to infection. For example, in many communities in Indonesia, open defecation is practiced because it is deemed to be dirty to have a toilet. Part of improving sanitation in these communities involves changing attitudes involving latrine use, and creating a social movement. While treatments are important, they are useless if they are unable to be integrated into local cultures.

    There are significant dangers to sweeping cultural mythologies. Cultural mythologies can perpetuate gender inequalities, racist ideals and colonialism. Take the example of eugenics, which utilized science to perpetuate racist ideals. Associating certain individuals with a disease based on sweeping generalizations, can intensify discrimination. This creates social barriers in access to health care and can create misconceptions that weaken the overall health care system.

    1. Hi Divya,

      Thank you for your response. “28 Stories of AIDS” sounds like a powerful read, and it makes me think of the importance of patient narratives in uncovering the realities of illness and developing ways to improve systems of care.

      I appreciate your example from Indonesia, since beliefs about excretion and styles of bathroom usage are really varied and interesting in global/cultural perspective. I know in China, there was a play written about the social meanings behind the transformation of the toilet, and what the isolated stall, as opposed to a communal-style toilet, so there are deep social meanings behind the movements and types of ideological expansions that underlie cultural transformations. Both our examples have to do with toilets, and your more about sanitation as a general problem than mine, but my point is more general – the reasons why people do things the way they do are in fact reasons, and the time it takes to implement cultural sensitivity, understanding, and compassion to create hygienic and health efficiency among those reasons is certainly an concern, but the collective social action of those within the community and who have a vision for improvement and change is a powerful resource.

  6. Thank you for the engaging blog post. Your exploration of the right to be ill is fascinating. You raised the really important and significant consequence of the stigma that surrounds HIV/AIDS: sexually active people who do not fit the false caricature of what an HIV positive person is do not think they need to get tested. Additionally, as mentioned in the comments above, people suffering from HIV/AIDS do not seek help or treatment because they don’t want to face being ostracized by friends and family for having AIDS.
    I think the concrete problem about stigma is the effect that the disease is removed from reality: if it is not spoken about, it does not exist, and you cannot contextualize it within your own life or understand how it might affect you. All you have are these caricatures of what the disease might manifest as, and these caricatures are so simplified and distant from you. Then, when someone does say they are suffering from the disease, they become representative of the disease and their entire identity is the disease. It becomes a dilemma where people with HIV/AIDS facing the burden of coming out about their status in order to reduce the stigma against the disease and try to reduce the acceptance of cultural myths. This to me seems hugely unfair, but I’m not sure how else the stigma surrounding HIV/AIDS would reduce.
    I appreciated your mention of the right to retain one’s identity. People suffering from other, less-stigmatized diseases have voiced their distaste for having their identity tied into their illness. For example, the term “people with autism” is seen as more respectful than “autistic person” because it holds that the illness is not defining the person.
    Also, I feel like it’s worth mentioning that the people who do enjoy all the rights you’ve mentioned are those who are suffering from the illness in developed countries, and who are from high-income backgrounds.

    1. Hi Ria,

      Thank you for the response, and I apologize for my delay in replying! I really like how you phrased the impact of stigma on the shades of reality of a disease, and in turn on a person who is suffering from it – their public identities as well as their private realities. You said: “if it is not spoken about, it does not exist.” I think going off of this, it can be said that when a disease or problem IS spoken about, it comes into an existence that is directly sculpted by the ways that it is spoken about. Again we see this is Benton’s exploration of HIV testing and disclosure campaigns, and the very tinted expectations of HIV-positive behavior and disclosure, particularly how they act along the lines of gender and class. Another example of this in the recent media seems to be how politicians and media in the United States express anxieties about ISIS and the group’s violent-extremist ideologies, which are spoken about in ways that create a (false) “reality” and very destructive stigma against Islam, a peace-promoting religion. From these realities that we create when we “speak” or don’t “speak” about illness and the understandings we lack, larger problems become inflamed (ex) xenophobia against Syrian refugees, or homophobic assumptions about people who fulfill the ‘false caricature’ of someone with HIV/AIDS) and the ways that people with power in society make choices and adapt their actions around these harmful constructed “realities” become increasingly threatening to our vision for a healthy and compassionate world.

  7. I really like your discussion about the identity of illness and also how narratives we tell around certain diseases can affect the way they are perceived, approached, and treated. I think this is especially interesting and important in the case of HIV and other sexually-transmitted diseases, because, as you say, of the stigma and blame that is put on those who contract the disease, due to narratives about “lifestyle” and even legacies of colonial medicine regarding the sexual practices of “natives”. I also think it’s interesting that many of those living with HIV/AIDS have been able to kind of turn this stigma around and create communities of solidarity that have led the advocacy movement. I love that you brought up the concept of having the “right” to be an ill person, to be considered as such and not an object of blame, because I think this is relevant and applicable to so many stigmatizing diseases, including mental illnesses, that are often seen to be attributable to the “choices” or “lifestyle” of the sufferer, and not always conceptualized as diseases worth treating.

    1. Hi Elena!

      Thanks for the great comment and I apologize for getting back to you so late. I appreciate that you bring up mental illness, because forms psychological and psychiatric care themselves, and of course the people who receive this care, are extremely fabricated in our cultural imagination (the television show Perception is a great example, being about a extremely functional psychiatrist and professor who experiences superhero-esque visual hallucinations as a symptom of his severe schizophrenia which the police harness to help solve cases… Yikes). Especially stigmatizing are seemingly contradictory societal expectations about people who have mental illnesses – their is the idea, as you mentioned, that their “lifestyle” or lack of personal motivation is to blame, rather than, for instance, the way their brains may metabolize serotonin; so, then, they could just “shake it off” of “snap out of it.” On the other hand, people with certain forms of mental illness experience extreme stigmatization that marks them not as lazy or lacking drive to just “be happy,” but instead being dangerous, unpredictable, and unreachable.

      Fostering an emphasis on personal realities (for all people, not just people with illness, HIV/AIDS, mental illness or otherwise) and allowing for a cultural shift of attention to the varying ways that illness, and life more broadly, can be experienced might empower us on a cultural level to organize around compassionate and judgment free care for individuals rather than having to organize around stigma itself and reinforce its reality.

  8. Hi Emma,

    Thanks for your post – I really liked your discussion of the right to create your identity as an individual with HIV/AIDS.

    When I was interviewing someone who had worked on a global health project for our interview paper, I interviewed a student who had worked in Ghana at a HIV/AIDS clinic. She was tasked with interviewing that patients to try and determine reasons for noncompliance. She told me that her patients seemed relatively open about their sexual partners and practices, but were not willing to share their HIV/AIDS status. I found this really interesting, because the disease is often linked with ideas of homosexuality and having many sexual partners, which then become two of the main reasons for the associated stigma. So even though people were more open about their sexual practices, there still was significant stigma around HIV/AIDS to prevent some from getting tested. I definitely think this case is very specific to perhaps the region, or this individual’s experience. However, I still think we can use it to brainstorm the best ways to treat the stigma underlying disease even in different contexts like this one. I agree that education and the general propagation of knowledge (and resources) are the key, but I am curious to know your (and others’) thoughts on how specifically to use these ideas.

    1. Hi Methma,

      Thank you for commenting – this is a really great point you bring up here and I regret not getting back to you sooner! It strikes me very much how the stigma around HIV/AIDS, which we believe to come from judgments about sex that tell us that having many partners or having same-sex partners should be a source of shame (or, taking it even further, as fundamentalist campaigns have asserted, that the sufferers of HIV/AIDS ‘deserve’ the disease as penance for the “sins” of homosexual sex or sex with many partners. Yikes!), can actually operate independently of disclosure around sexual practices. It’s very interesting to think about whether (and how) HIV/AIDS stigma has become flipped – off of societally condemned sexual practices and onto the associated disease itself. I certainly believe that the stories your interviewee was able to tell about their time in the HIV/AIDS clinic certainly provide an opportunity to re-think how stigma behaves and is bestowed and, in turn, how to eradicate it.

  9. Hi Emma,

    I appreciate how passionately you articulated your thoughts surrounding people’s identities with regards to their health status. Whether in the context of the creation of a global health intervention, as a medical professional, or even just as members of communities that suffer socially, we must consider how disease will affect a person’s identity and how that, in turn, will affect the disease process and treatment. In answer to your first question, it is obviously extremely destructive to ones psyche and physical self to live in a community that is inhospitable and ostracizes people for their health issues. No matter how free access to health resources are, pervasive stigma will act as a barrier to them. I agree with your point about the shared responsibility of a community to lessen the natural tendency towards creating a hostile environment towards those with a stigmatized disease. Though it is optimistic to think that is achievable, it is certainly a model by which we can strive to work.

    In response to your second question, I think it is very important to respect local beliefs when responding to any kind of health issue, but especially diseases that are highly stigmatized. Sometimes presenting only the rational scientific information behind a disease is actually more destructive to progress. Health education is very context and culture specific, however I believe that spreading at least basic knowledge ultimately lessens the biopower that one group of people has over another.

    1. Hi Zoë,

      Thank you for your comment! You articulate wonderfully how the biological and social interact in a violent manner when socially-infectious narratives of disease form barriers to quality and sufficient care and support for people who are suffering. Anticipation of destructive social consequences of disclosure in sex-negative, sexist, and homophobic environments bar people from important testings, check-ups, treatments, and forms of personal/communal care, directly affecting the biology of a progressing infection and the affects of stress on the neurological management of moods feelings of self-esteem and worth to seek treatment in the first place.

  10. (in response to your second question): , I don’t think it is possible to fully capture these realities of transmission and to somehow separate our own beliefs (as well as local beliefs abroad) from our response to disease across the globe. To use your words, we have our own “cultural mythologies” and forms of storytelling that would have to be separated from the realities of transmission on a domestic level too, not just a global one. I think that taking further steps to be aware of our own culture’ role in how we view disease/treating it/what constitutes an emergency (guinea worm) and seeking to understand the local culture, rather than pushing it aside, is the best that we are capable of.

    3. Structural violence and social suffering are problems that can be worsened by these forms of storytelling about disease. Because we suffer in a social environment, suffering from a disease with a stigma attached makes for more suffering from the sick individual, but also those around him. If the group stigmatized by a certain narrative is already marginalized, this adds to the structural violence that they are already being subjected to.

    1. Hi Sylvie,

      I agree completely. Restructuring our own cultural narratives about transmission and our challenging our personal/communal assumptions about illness is an important step in making compassionate and quality care for these patients accessible. I appreciate your mention of the social suffering aspect of all this – I agree that when our sort of ‘go-to’ cultural assumptions bar others in our communities from seeking the care and support they need and deserve, we do our entire community – and ourselves – a severe disservice. How are we supposed to build healthier communities if we keep such a potent facet of inequality and judgment in place?

  11. Hey Emma,
    I think your discussion of stigma and how it affects access to care is really fascinating. I thought immediately of some work I did 2 summers ago with a nonprofit researching access to HIV services for people with disabilities in Zambia. In this case, people with disabilities faced a double burden: the intense stigma attached to having HIV combined with stigma surrounding disability. People with disabilities are desexualized to the point that it’s unfathomable that they could possibly have sex and consequently they’re excluded from HIV services. So stigma is an extremely powerful influencer in terms of access to care and reducing stigma is a social factor that often needs to be considered when administering care.

    1. Hi Jessica!

      I love that you brought this up – I have a very big interest in the many angles on illness and how our socially-honed perceptions of people, their bodies, and ways that their body may deviate from our expectations about bodies interact in extremely powerful ways with those illness experiences. Sexualization and de-sexualization (or even infantalization) of people with disabilities is a topic I explored briefly in a class on disability and sexuality, and though we never covered the greater systemic problems that these sorts of ableist judgments about bodies and the people who inhabit them stir up.

      From a global health perspective, the double-burden of HIV/AIDS and disability stigma (which, as I sense from your description of the problem, seems greatly to have to do with societal discomforts with sex and the idea of people with disabilities engaging with sex [sex-negativity], as well as an ableist view on sex and whose bodies are susceptible to consequences of different kinds of sex) seems like an important problem to tackle in the cultural narrative of sex, disability, humanness, AND the idea that we all share the burden of keeping the world healthy accompanied by the understanding that we must eradicate judgments about one another and practice compassion, in our local communities and in our clinics.

  12. Hi Emma,

    Thanks for the thorough blog post. I’d like to address the latter two questions you posed.
    With regard to “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?” I give a wholehearted “yes!” Thought the “cultural etiologies and local beliefs” are important to respect, they are also important to deconstruct. As long as stigma continues to remain attached to a life-threatening illness, cultural norms and local beliefs that stymie the ill from seeking help deserve to be upended entirely if one plans to take a humanitarian approach to this issue.
    To address the last question: “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?” it seems as though you already answered it yourself–it’s ignorance that’s created. As you stated, “these sweeping cultural mythologies “inaccurately depict certain “types” of people as carriers. Thus, ignorance is bred, and from that, stigma and marginalization. This is very damaging to a community because it silences those who need help the most. They’re stripped of the language needed to seek medical attention. To remedy this, a cultural paradigm shift is needed, which is, admittedly, a very difficult thing to accomplish independent of outside influence and aid.

    1. Hi Chad,

      I fully agree with your response. I especially appreciate how you bring up cultural paradigm shifts as being a large (if not the largest) blockade that stands between patients in need whose illness status bestows them with a public identity that is highly stigmatized and the care that everyone deserves. I am a firm believer in the capacity of cultural narratives to inflame public health problems to dangerous degrees. I’m especially focused on this aspect of my research at a sexual health clinic in Providence, where I see patients and staff who are worn down by political assumptions and violent, stigmatic rhetoric about women, queer individuals, bio-female bodies, the types of sex women “should” be having, and when, and for what reasons, etc… We see political attacks on compassionate care and safe spaces for patients who need and deserve affordable and quality personal healthcare – from check-ups to STI screenings to breast exams to treatments for diagnosed STIs. Stigma and uninformed, violent speech about sex, gender, personhood, and bodies reflects a culture of patriarchal structural violence and sex-negative rhetoric that has manifested numerous times into deadly physical attacks on similar clinics around the country. A culture of inequality and stigma that inspires these horrific exchanges and puts lives (directly and indirectly) in danger by making centers of healthcare a dangerous place to go is not a culture that sponsors a truly healthy world.

  13. Hi Emma. Thank you for such an engaging and eloquently written blog post! You brought up extremely important points regarding the right to know vs. the right to be ill.
    1. I think that the ultimate problem with stigma that underlies disease is that the stigma will always dominate the approach towards an illness. As your second question hints at, the stigma is often so closely intertwined with the culture of the community. As a result, if a new disease would be to emerge, it is understandable that one would turn to the familiarity of one’s cultural beliefs as opposed to foreign and nebulous claims about the origins of this new disease. In a sense, the stigma may be a more comforting explanation, and because of this, as long as stigma exists, there will always be impediments to the provision of treatments to a community.
    2. I do not believe that it is possible to completely untangle the realities of transmission from the local beliefs. Primarily because as you noted, I think that in order for the community to successfully engage with the treatments, it is vital that they are shown respect. Throughout this class we saw far too many examples of where this respect was either partly or completely neglected – and the consequences of which were deplorable at best (right now I am thinking about people barging into homes to spray DDT…). The person I interviewed for our paper provided a very interesting example of how the realities of a disease can work alongside local beliefs. The project leaders invited traditional health healers to their training sessions to train them in home-based life saving skills. Although the project wasn’t dealing specifically with an infectious disease, but rather on delivering home based emergency care, I do think that if the support of the community is desired, the best way to achieve such support is through engagement with local approaches towards health.
    3. The dangers of the sweeping cultural mythologies about transmission are that privilege is often linked to who ends up being depicted as a carrier and who is the innocent and uninfected. I think that it is linked to Farmer’s theory of ‘structural violence,’ in that certain social, economic and political forces are in place to make those already suffering be more likely to be the ‘carriers.’

  14. Hi Emma! Thanks so much for your post. I really enjoyed your topic on the discussion of the right to “rights”, and the co-production of an HIV/AIDS identity — something I chose to focus on in one of my former audio posts. As you state, there are very intense, personal/interpersonal, etc. experiences that occur following any diagnoses, and these must be dealt with in a very cautious way. I really appreciate your discussion of collective
    responsibility, and truly believe it is a key method to gaining sustainable success.

    A really great example of an intervention that proved successful utilizing community awareness, was the Family Planning and Educational programs discussed in Thailand (carried out by Mechai). These programs were innovative, cost-effective, simple, and engaged the entire community in its efforts – all factors for success throughout Mechai’s work. discussed during the in-class film about Delivering the Goods. Mechai also addresses the concept of social suffering (pain and suffering caused by social forces; and interpersonal and collective experience of suffering) through his stigma-eradication programs, and support of individuals currently living with HIV. As stated by an HIV-positive woman, many people who are infected with HIV choose not to seek medical care, for fear of community isolation, social repercussions, and general rejection within their own lives.

    Through Mechai’s stigma-erasing programs, he brings HIV-positive individuals into the forefront of the conversation, allowing for myths to be busted, and new ideas about HIV to be formed. His demonstration of drinking the same water that an HIV-positive person drank was powerful and important, allowing children and individuals to trust the campaign, and the people running it. These forms of storytelling were effective and engaging, and led to massive successes. In addition, Thailand is home to a collective suffering (like many other places), experienced by individuals who are HIV-positive. They can lose their jobs, their money, their families, and their places within communities. Mechai is combatting this by providing loans to HIV-positive individuals, in order for them to contribute to their families and communities, and rebuild the life that was lost to an HIV diagnosis. Though this stigma still remains, individuals who are HIV-positive are leading the efforts to change that mindset, while being supported by the organization itself.

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