In America, the image of HIV/AIDS activism has consistently been perpetuated and co-opted by the primarily upper class, cisgender, gay male members of the LGBTQ+ community. While I have no intention of undermining the experiences of suffering of anyone with HIV, the dominant narrative perpetuated by films like The Normal Heart[1] are wildly under-representative of the complexities and burden of this disease. The reality of HIV/AIDS – that it is one of the largest killers of people in the lowest income countries worldwide such that 66% of all HIV related deaths occurred in sub-Saharan Africa alone in 2014[2] – is one that can’t be ignored.
The privileging of the upper-class, western HIV experience in the understood cultural history of this disease is implicated by the example of Haiti, which Paul Farmer catalogs in his chapter, “The Exotic and the Mundane”.[3] Farmer argues that the spread of HIV in urban Haiti (mostly centered in the suburb Carrefour, home of Port-au-Prince’s redlight district[4]) is a textbook example of the “geography of blame.” Measures of guilt and accusation have been tied to the spread of HIV since it’s initial rise. Though the conservative right in America were quick to blame the “immoral,” urban men who had sex with men (MSM) for the spread of the disease, placing a moral judgment on a biological disease outcome and therefore conflating the biological body with the moral one, seropositive Haitian immigrants in America “denied homosexual activity or intravenous drug use.”[5]
Farmer criticizes American media outlets for effectively blaming Haiti for the American HIV epidemic, exoticizing and alienating the nation, as exemplified by Vanity Fair’s description of Haiti as the “black hole” of our hemisphere[6] in addition to exploiting Haitian voodoo acts as a potential source of transmission[7]. The relationship between cases of HIV in America and Haiti are clear: wealthy American vacationers came to Port-au-Prince and transmitted the disease to local sex workers, who, though many self-identified as heterosexual, would be paid into homosexual activity.[8] This conflated issues of homophobic sentiment in the U.S. with racial, gender, and economic inequality in Haiti. From here, it was found that the largest population of HIV positive individuals in Haiti were female sex workers, and Haiti became the evidence needed to suggest that HIV transmission was “more efficient” from men to women.[9] By 1986, it was impossible to deny that heterosexual activity was an ‘accepted risk factor.’[10]
Soon, a grand sentimental switch occurs in the evangelical right. Franklin Graham convinced the senator Jess Helms that “AIDS afflicted the ‘blameless’ just as often as it afflicted homosexuals.”[11] By positioning AIDS efforts towards that of the blameless, inherently moral children, we quickly saw a huge increase in the political capital of the west in AIDS treatment. The Clinton Administration, which had at first sided with pharmaceutical companies in the debate surrounding South Africa’s Medicines Act,[12] an attempt to provide more affordable, generic versions of antiretroviral therapies to HIV positive individuals, soon sided with the suffering and began providing aid directly to mothers and children who were HIV positive. By applying a moral judgment on those who were deserving of aid, there becomes a complication in the way that medications are transferred.
However, it was also this moral judgment that stirred action from abroad. The 3×5 campaign, which the WHO established as a goal to provide ARV treatment to three million people living with AIDS by the end of 2005, was unique in its efforts of establishing success as a measure of the number of people reached as opposed to the amount of money raised. By humanizing donor support under the framework of the “deserving” ill, we see the perpetuation of the implications of moral medicine. While it took until 2007 for the 3×5 campaign to be completed, it was considered a massive success in “galvanizing” the global AIDS effort.[13] By centering this mission around that of the suffering children – the people behind the disease and not the financial needs of the disease treatments itself – we see a re-affirmation of the complex power structures inherent in the way that the wealthy choose to spend their money – along moral and political lines.
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[1] Cast by almost exclusively white males, it is very clear where Hollywood is looking to spend their money insofar as narratives surrounding the HIV crisis.
Murphy, Ryan, Larry Kramer, Scott Ferguson, Julia Roberts, Mark Ruffalo, Jonathan Groff, Jim Parsons, Matthew Bomer, Taylor Kitsch, Julio F. De, Alfred Molina, Cliff Martinez, Adam Penn, Danny Moder, and Larry Kramer. The Normal Heart. , 2014.
[2] The American Foundation for AIDS Reserach. http://www.amfar.org/worldwide-aids-stats/.
[3] Farmer, Paul. Infections and Inequalities: The Modern Plagues. Berkeley: University of California Press, 1999. Print.
[4] Ibid. 103
[5] Ibid. 99
[6] Ibid. 100
[7] Ibid. 106
[8] Ibid. 119, 122.
[9] Ibid. 113
[10] Ibid. 114
[11]Messac & Prabhu, Redefining the Possible: The Global AIDS Response. Reimagining Global Health: An Introduction. ed Paul Farmer. Berkeley, Calif: University of California press, 2013. Print. p 127.
[12] Ibid. 122
[13] Ibid. 114
Dolma, I thought your blog post was very good, and I appreciated your discussion on HIV/AIDS blame and care or lack thereof. On thing I would like to add to your discussion on United States media outlets blaming Haiti for the introduction of HIV into the United States, is that that seems to be a common factor amongst disease outbreaks or epidemics. Whereas, if someone does their research, they would find that the first case of HIV occurred in the Congo, and the first recognized cases occurred in the US, where it was first established as a new health condition. There is evidence supporting that HIV was in the United States before it was in Haiti, to disband the media theories. In my opinion, the United States likes to find someone to blame for everything, and if they can blame another country that’s even better. While yes, many times disease transmissions can be traced back to tropical countries, or third world countries, there are also plenty of diseases that are falsely associated with third world countries.
Throughout history, the United States has associated people from foreign countries as disease carriers. As we have learned throughout the semester in various readings, certain diseases are considered tropical diseases and can only come from those countries. Therefore, for the more serious of these illnesses, the people from such countries are automatically seen as disease carriers. So part of the problem with the US media placing blame comes from history, where maybe these people were carriers for disease.
What the World Health Organization describes as a tropical disease I think is a very different definition than many think about. The WHO explains a tropical disease as “infectious diseases that thrive in hot, humid conditions.” This means that the people of the country are not inherently disease carriers, and them being ‘dirty’ does not make them diseased. The reason these diseases occur in these areas is because of the genetic makeup of the germs, and the fact that they thrive in that type of climate. I’m sure there are other disease that thrive in more temperate climates that these tropical countries can place blame on. Some of this also ties in to the way people spend their money in donations to different causes. If the people are made to believe that it is the fault of the people and they are dirty and disease carriers, they will not want to donate their money. This goes into the whole concept we discussed in class about the face of the cause, and using pictures of children to draw people in to the disease. Even if they know nothing about the disease, if they see cute children they are more likely to donate to that cause.
Sources: http://www.avert.org/professionals/history-hiv-aids/origin
http://www.who.int/topics/tropical_diseases/en/
Kelly, what a great point! I absolutely agree that the United States tends to blame a group of people for a the transmission and spread of a disease rather than the disease itself. Another observation is that the United States also tends to ignore the severity of a disease until it becomes a problem domestically. This pattern can be seen in HIV/AIDS, but a more common example was seen during the Ebola Outbreak last year.
Unknown to many, the Ebola outbreak started in Guinea about 8 months before the United States media picked up on the story. The growing number of deaths caught the attention of the WHO, who sent doctors to help set up emergency clinics. It wasn’t until one of those doctors came back to the United States with the infection that Ebola became a serious concern. The threat of and Ebola outbreak sent the entire country into a frenzy, and an unnecessary frenzy at that.
Similar to HIV/AIDS, Ebola was also blamed on the cultural norms of African natives, and their “dirty” lifestyles. The start of the outbreak was blamed on the consumption of bush meat, or non-conventional sources of protein including bats and rats. Furthermore, the rapid spread of the disease and scale of the outbreak was associated with unclean burial methods, unprotected sex, and lack of personal hygiene. Unfortunately for the people of West Africa, the headline news stories did not focus of the severe lack of health care in the region, which if in place could have contained the outbreak rather quickly. The west tends to frame these tropical diseases as a consequence of the actions of others, rather than the natural life-cycles and bacterial growth of the planet.
http://www.cdc.gov/vhf/ebola/outbreaks/2014-west-africa/index.html
Hi Dolma,
You bring up an interesting point in your blog about HIV and AIDS, and the misconception the world had and continues to have about the details of this disease. It is true that it is an infectious disease, but that does not mean that it can automatically be traced back to developing countries and populations in poverty. It is clear that the virus was indolent to Congo, but it did not spread the infection to people in that country like the plague. It was brought to the western world and spread to others by the westerners through their indiscriminate sexual practices and global travels. It was easy to blame a neighboring country for the spread of infection because of their proximity to our nation and their poor living conditions. It was also an easy cover up for the homosexual behavior that existed in this country hidden behind closed doors, as a taboo for many decades to come.
As I was writing this blog another thought occurred to me. Haiti is not the only nation that lies in close proximity to the U.S. Mexico, Central American countries, Cuba, and Costa Rica are also quite close by, and many of them are just are poor as Haiti. That said, why only blame Haiti for the origin and spread of HIV to the U.S. and not others? Does race have anything to do with it?
Hello Dolma,
You post was a great read, thank you. One of the points that struck me was that of the role of the media. Today, the media plays an important role in shaping public opinions and debate. Being an independent functionary, the media has a lot of power and this power has been wielded with both good and bad results. Bad results, such as the creation of a discourse of blame in the case of HIV and Haiti are really damaging but at the same time the media has helped raise awareness and funds for a lot of diseases on the good side. In what ways do you think, can the power of the media be harnessed to improve public health? Does the media do more harm than good?
Hi Harsh!
Thanks for your comment. I think media is a really tricky topic, as its fundamental goal of amplifying and reproducing voices and stories on a broad scale is one that could be co-opted for good or for … not-so-good. Especially when dealing with images from abroad, I think the media has to be particularly conscious of what types of images are being reproduced. In an over simplified and fairly tangential example, I’m thinking of the idea that way too many books about Africa have effectively the same cover (see this Atlantic article: http://www.theatlantic.com/international/archive/2014/05/why-every-book-about-africa-has-the-same-cover/362101/)
At the interpersonal level, the way that reproduce images of suffering is incredibly strategic, especially in searching for financial donors. Adia Benton’s HIV Exceptionalism extends this notion of what it means to “look sick” by highlighting the drive to “Live positively!” – to look good and to look well so as to appear grateful to the resources available to HIV+ people in Sierra Leone while also attempting to destigmatize bodies with HIV within a local framework. What is particularly compelling to me is how absolutely impractical this type of image production would be in soliciting foreign donors, as most donors aren’t looking to provide aid to someone who “looks well.” We see the image of the starving child all the time, and I think the way that media is used on the ground vs. abroad is a good jumping off point for which to talk about how media can affect our conceptions of illness and disease.
I think you made a great concluding point by tying this example of global HIV/AIDS health efforts to the moral tinges on decisions regarding aid. In a comment above it was mentioned that people do not want to donate money or help in other ways if they can somehow blame the ill themselves for the disease or play up the “they deserved it” rhetoric. While this was used with men who had sex with men in the 1980s, it is still pervasive in dialogue about prisoner’s health rights. What other segments of the population do you think this rhetoric affects? Do you think it still is present unconsciously when wealthy countries decide which low-income countries to donate aid to?
I absolutely think so. My mind immediately goes to the structure of missionary work as it stands today (often, proselytization as an even trade for medicalization). In this world, it is far too often decided that the bodies worth treating are the ones who will listen to the “provider’s” moral/religious demands/recommendations/asks.
I also agree that this kind of moralizing rhetoric is still hugely influential on where wealthy countries decide to use their aid, both abroad and domestically. I think in particular, any kind of health issue related to sexuality and/or reproduction is especially prone to this kind of moral judgment, because sexuality remains fairly taboo in most places. I think we can even see this in the US regarding the debates over Planned Parenthood and contraception/abortion, which have escalated dramatically this year. All arguments to cut federal funding to Planned Parenthood (even for medical procedures unrelated to abortion, like pap smears and breast exams) seem to be based in ideas about women’s sexuality being shameful, and make similar use of this moralizing rhetoric to deem “promiscuous” women less deserving of care.
Dolma,
I really enjoyed your blog post and I think the argument you raise about the conflation of morality and disease is extremely important. You did a great job explaining that moral judgment of people suffering from HIV as unworthy of aid is really quite similar to donating to aid because the victims are perceived as innocent – both established patterns of thought are rooted in problematic ideology suggesting that some people are deserving of aid while some are not. So many organizations capitalize on the image of the “innocent child” to attract funding. This cute image appeals to the hearts and pity of donors. Yet the logic behind this image supports the idea that just as some children are innocent and do not deserve to be sick, some people are not innocent and do deserve to be sick. This moral judgment of aid recipients is especially troubling when we remember that it is a very small group of people (wealthy white Westerners) who are defining morality, and using their narrow definitions to determine who to relieve of suffering.
We all know that diseases do not discriminate based on morality, so why is rhetoric about the sick so frequently about their being deserving or not of aid? I think it is important to remember that morality is the connection that most people feel to global health. Those who do not work or study global health care and donate to global health initiatives out of a sense of morality and duty to contribute to a better world or attempt to right the wrongs caused by humans in the past. Thus it is difficult for people to see disease as a strictly physical phenomenon when their relationship to disease (deciding to care) is rooted in their sense of morality.
Thanks,
Mira
In response to: “We all know that diseases do not discriminate based on morality, so why is rhetoric about the sick so frequently about their being deserving or not of aid?”
I think this goes back to the idea that there are “limited” resources out there and that said resources must be triaged. In triaging, we get to place a moral judgement on whose bodies are worth saving, and the people with the deepest and fullest pockets get to decide which bodies are triaged first. Thus, the moral and ethical frameworks that these individuals are operating within are the ones that will most likely set the grounds for determining who is “deserving” of aid, as determined by their own personal ethical standing.
This also reminded me of Sheri Fink’s recent book, Five Days at Memorial, which chronicles the impact of Hurricane Katrina on Memorial Hospital in New Orleans. One of the first discussions that the hospital had was which patients would be triaged out to a nearby hospital via helicopter first, which brought up a fascinating conversation on which bodies most deserved saving (the NICU premie, the eighty-five year old on life support, or the 40 year old, otherwise healthy, with a broken leg?), and also brings into question this idea of the DALY and its involvement with placing a moral judgement on life lived and life-yet-lived.
Hi Dolma,
Thank you for your post- it was a very enjoyable read! As both Kelly and yourself point out, it is very hard for us to place the blame on a microbe- a miniscule, faceless object. It is far much easier for us to blame other humans who are much more tangible and palpable targets for our fear. As I was reading this, I couldn’t help but think of a concept we discussed earlier in the semester about the “Other.” In this case, the “Other” represented homosexuals, individuals of colour and those of different nationalities.
Most importantly, I enjoyed the connection you made between morality and disease. Morality is an important factor we must consider while appealing for international aid. As discussed in class, there is something so emotionally moving about a child suffering due to the innocence and high morality we associate with children. How we perceive global health is driven by our ability to empathize and relate to others. Your article probes us to think about how narratives and faces can alter our perception of disease and how we give aid.
To quote tolstoy: “It is amazing how complete is the delusion that beauty is goodness. And your post showed that even the global health narrative is affected by this delusion.
This was a very very powerful post, so props to that. Well my first reaction (and probably an appropriate one) is “wow, people are terrible.” And they’re much more reprehensible than I previously realized. I had never made this connection between HIV in America and Haiti…and it does make a lot of sense. It’s implied also that “morals” (homophobia) is what led to the spread in Haiti…Your post is very effective as far as generating a strong response. However, you’re really playing with two extremes (wealth, upper-class, western *evil* and the poor, exoticized “Other”) to make this point.
If we, as aware individuals,don’t judge things morally (giving aid, transferring medication), how else can we judge them? We can judge them scientifically or we can use economic approaches but there are assumptions (commensurability, consequentialism) in the Cost-effectiveness/Cost-Benefit analysis too. And when I think about these alternatives, morals, while having their shady points, don’t seem quite so bad.
Hey Sylvie!
Thanks for your input. You bring up a good point on the note of practicality and financial barriers, but I think that placing moral judgement on biological illness and the resulting treatment is inherently problematic. That disease is something inherently biological / empirical, but often feels random or illogical or unjust, makes valuing illness implicitly subjective. Moral judgement, then, allows for the judgement of persons and their ideologies, cultural and racial identity, and other humanizing characteristics (the things that make more than bare).
I also think that there is something really interesting about the “morality” of medicine, and while I obviously think that pharmaceuticals are incredibly valuable in situations that call for them, the use of medication is never not-neutral. Derrida borrows Plato’s term, Pharmakon, to discuss this concept. Basically, Plato describes the use of language as a pharmakon, or something that is inherently both remedy and poison (that word choice and use of language more generally is always political in some way – it is not inherently good as it’s use always both harms and heals). This can easily be applied to our understanding of medication. Chemotherapy is the most basic example. Obviously, there is something beneficent in chemotherapy’s ability to shrink (or at least stop the growth) of tumors, but in choosing to opt in to chemotherapy, you aren’t just getting the positive medical benefits. You also get the financial burden, the nausea, the balding, the loss of appetite, etc. I think that this is one consideration often missing in the Health-As-A-Human-Right argument, which implicitly suggests that medicine is wholly and unwaveringly good and just.
Made me think of the fact that the German word for poison is “Gift.” And also pharmakon – pharmaceutical. WHOA. so cool.
But is it about the sword or who is wielding it? With medicine? With morals? Is it the medicine itself, the material thing, or is it medicine as a concept/subject/pursuit that’s the neutral one? I believe that morals are related only to conduct and principles, not material goods. Granted, those principles may be wrong. And that *is* problematic, no doubt about that.
Making questionable judgements based on race/ethnicity/class/gender–that may be making a moral judgement…but one that is immoral.
Again, going back to my tolstoy comment that beauty ≠ goodness–yes chemo therapy is not pretty, but at the core, providing it is “good.” I think it would be immoral not to provide it.
The morality is questionable when it comes to the “opting in” — I agree.
Hi Dolma,
I really appreciated that you presented both positive and negative outcomes of placing moral judgments in global health crises. On the one hand, in the HIV example, placing moral judgment was extremely problematic as this lead to deciding who ‘deserved’ access to treatment. However, on the other hand, the WHO 3×5 program is a prime example of how moral judgment spurred effective action. It seems to me that this is a case of trying to work the system, even if said system is imperfect. If placing moral judgments is necessary to generate interest and action, then it’s certainly important.
Hi Dolma,
Thank you for your post. Your responses to other students comments have also been very enlightening and well-thought out. Thank you for taking the time to reply thoughtfully. I have learned a lot from reading the above comments.
I think you are completely correct in asserting that treating people on the basis of a moral judgement is wrong. To make any judgement on any disease is wrong. Today there are many public health issues for which the treatment is based on a moral judgement. For example that of obesity or smoking. These are not necessarily seen as diseases (though both can be, and obesity and addiction should not be trivialized or made to seem easy to handle) and so the general public has had an easy time moralizing them. Though the stigma that exists around obesity and smoking is very different from all of the connotations and assumptions surrounding AIDS that were so destructive to the healing process, the moralizing of these issues affects many people in the US and abroad, and probably not positively. People seem to believe that by moralizing everything, by placing some societal weight on a disease, it will somehow be productive. Shame does not cause progress. It is definitely necessary for public health movements to work on helping people change their behavior to treat their bodies well, and so those movements are most effective I believe when shame is not involved. I know these are very different issues, but this is just what your post made me think of!
Hi Dolma,
Really appreciated your post. I thought you hit the nail on the head when you stated, “By applying a moral judgment on those who were deserving of aid, there becomes a complication in the way that medications are transferred.” You really did shed light on something I had given enough thought to: what causes people to give in the form of humanitarian aid? Are our reasons the right reasons? Does it even matter in the end if the aid is given anyway?
I think the issue with the Clinton administration only giving more aid once they realized non-identifying homosexuals were suffering from HIV/AIDS, too, is a problem we don’t scrutinize enough. In some ways, we as a society still place a lot of blame on homosexuals, painting their sexual lives as more deviant and less deserving of our sympathy. If we want to change this, we have to go through a cultural shift in our outlook on sexuality. Once we learn to stop demonizing minority sexualities and start embracing them for the very fact that they are different, we’ll never consciously or sub-consciously feel compelled to offer support.
Hi Dolma,
Thank you so much for a very thoughtful post and for continuously providing examples of how your arguments don’t only relate to HIV/AIDS but many other global health issues.
I wholeheartedly agree with you in that there is no place for moral judgement when evaluating who should be treated. I think that that this is an issue that is greatly underestimated as one would of course like to think that those that have the power and the resources to distribute treatment and medicine are completely objective in their approach. However as you pointed out very well, this couldn’t be further from the truth.
Going back to Sylvie’s comment where she asked how else we can judge things if we don’t judge them morally, I think there are a variety of ways, it is just easier and less intimidating (from the point of those in power) to judge things morally. Just to back track a bit, when in lecture we were made to think about why people want to help and we read Peter Singer’s thought experiment on the drowning child, it was made clear that there is no logic to the ‘us’ vs. ‘them’ mentality that permeates the West. If the drowning child – or someone suffering from an infectious disease – is not viewed as ‘us’, Singer argues that one is less likely to ‘save’ them. To take Singer’s argument further: spending $5 on coffee instead of donating $5 to an anti-Malaria foundation that provides nets is just as bad as letting a child drown in plain sight. To quote Singer from Famine, Affluence and Morality:
“The fact that a person is physically near to us, so that we have personal contact with him, may make it more likely that we shall assist him, but this does not show that we ought to help him rather than another who happens to be further
away. ”
I think that a reason why politicians and the media try to insert moral judgement on global health issues is because it is much easier to do that than accept that we are just as responsible for saving a drowning child in plain sight as we are for relieving those invisible to us from suffering.
-Note I am not referring to all of Singer’s arguments, just the ones he proposes in the paper I mentioned.
Dolma — thanks so much for your post. I really appreciated the overall theme, and the engaging discussion of the ‘deserving ill’, and how by creating an association between AIDS and the blameless, we were able to see massive change and action. It’s important to understand the underlying and subconscious forces that go into these decisions, so I’m glad you chose to further analyze this topic.
To agree with Kelly’s comment, I believe the association of foreigners as ‘disease carriers’ enable the transmission of this ideal through many generations of global health efforts. As another student stated, the United States often does not want to recognize or deal with an illness or infection until it becomes a problem for us. It’s easy and simple to place blame on poor, “dirtier” nations, and forget to address the historical context and spread of these re-emerging diseases.
Additionally, as you stated in your post, the media has an incredibly influential role in shaping opinions, raising attention to certain issues, and inspiring donors to get involved in the cause. During the “Ebola outbreak” I remember seeing a flash of CNN in the Ratty, which stated, “Can you can Ebola in a swimming pool?” I remember feeling embarrassed that this was our news, and appalled by the fact that we weren’t focusing on the far more concerning issues relating to Ebola. In many environments, the illness itself became almost trivialized. Though it is a tricky question, I often wonder what correct balance media outlets can strike, to emote empathy but maintain respect and dignity/autonomy for the individuals and community being discussed.