Aids and Accusation Unimagined Community
AIDS and Accusation: Haiti and the Geography of Blame by Paul Farmer, and Unimagined Community: Sex, Networks, and AIDS in Uganda and South Africa bring the Western reader into a confrontation of largely ingrained belief systems regarding self, wellness, disease, one’s place in economy and privilege, and the vast differences in outcome that social isolation, economic position, and culture can effect on disease management. Farmer’s book was initially published in 1992 and published again in 2006. Thornton’s book was published in 2008. AIDS is a particularly unique disease, as it is transmitted in moments of intimacy, through social networks that are culturally based and sometimes not consensual, but it has complicated moral undertones when death or severe illness occurs and is visible to the community in which the individual resides.
The two books presented above look at culturally different populations struggling with the spread of the disease from two different perspectives. Dr. Farmer, as a medical physician and anthropologist, brings both a practical and scientific medical approach and an inescapable empathic lens inherent in those who practice medicine. Robert Thornton brings the anthropological view of an ethnography tinted with personal experience in the culture and a deep understanding of what it means to live within the social constructs that allow this disease to flourish. Both books present valid, researched, and largely-unconsidered explanations of the development of the AIDS epidemic in their respective cultures. When approaching a review of these books, I find it important to consider that they are primarily written for the Western reader. They are an attempt to reach through a carefully constructed idea of AIDS in the United States and Europe as a disease that “”doesn’t touch us unless an individual makes poor decisions or is the victim of an accident.
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Ultimately, the cultural construction of AIDS in the West is one of personal blame, choice, and suitable reprimand for violating some ordinance of a Puritanically-influenced culture system. Both books attempt to show a different worldview: that not only personal choice in partner brings this diagnosis, but that economic and social infrastructure, social isolation and cultural nuance affect the transmission of HIV/AIDS. Another key point emphasizes that constructs of disease transmission are often outside of the area of influence of the individuals experiencing the disease. They are often powerless or power-deprived and lack the agency to effect positive change alone. Particularly in the transmission from mother to infant, the disease cannot be blamed on a decision by the child, and as argued by the authors the mother is a victim herself: of isolation, economic instability, social and cultural norms which may hide the sexual networks spreading the disease, and other factors. Farmer describes in his introduction that the purpose of the ethnography is to bring to light the unseen connections between large-scale forces in small-scale settings (Farmer 2006, 9) Paul Farmer, as a medical physician and anthropologist, explores Haiti and its complex cultural practices as assistants to the spread of AIDS. He begins his book refuting much of the previous work done on Haitians and their voodoo practices as potential birthplaces of the disease on the island. This theory not only placed the blame of acquisition directly on the culture of Haiti but also served to isolate them as an “”exotic people, furthering the distinction of weirdness and susceptibility.
Farmer notes that historically, Haiti has been described as a culturally isolated and distinctly backward place, essentially populated by peasants and voodoo practicing shamans. These externally applied descriptions helped shape the idea that Haiti would be a place where AIDS would flourish, and that it could very well be a birthplace of the worldwide epidemic. Haitian scientists declared that this was a racist idea, purporting that individuals from the United States military and tourists spread the disease, as well as the contaminated blood supply and the bisexual and homosexual prostitution that occurred as a necessity for individuals to eke out a living. The history of Haiti is one of dependence and poverty, which is noted thoroughly in the first few chapters. Farmer’s book contains an ethnography of a village, Do Kay, where AIDS affects three of the individuals in the village. It is noted, however, that the story of Do Kay is an example that Farmer attempts to tie into the wider narrative of Haiti’s history and current dependence on foreign aid. He is able to link economic, social, political and cultural subtleties to the understanding, treatment or lack thereof, and transmission patterns of AIDS. All of this is done with a keen sense of empathy and understanding that an individual must possess as a practicing physician. Robert Thornton is an anthropologist who attempts to understand AIDS specifically through the lens of sexual networks and explains to the reader that his purpose is to offer an ecological or anthropological approach to the study. He compares Uganda and South Africa’s experiences with the diseases, evaluating their encounters with and responses to the disease and its transmission, which he describes as “”diametrically opposed.
Like Farmer, Thornton’s disgust with political involvement and influence around assistance to those with or affected by the disease is evident. Thornton also at great lengths describes South Africa as “”just another African country. He is aware of the perception of difference surrounding it and reassures the reader that it is contextually appropriate to discuss it as an example of African response to AIDS. Thornton’s book seeks to ferret out the networks that brought AIDS to its peak, from Tanzanian smugglers in Uganda to South African Zulu culture encouraging sexual satisfaction at any time. One of the merits of Thornton’s book is its determination to display immensely complex networks as accessible and discoverable. These networks are hidden, via moral, social, and cultural standards of behavior, and sex is one of the taboo subjects all over the world. Social and sexual networks are evolving interactions based on the culture and constant political shift in these two countries. Thornton encourages the reader to shift the perception of the transmission of disease from behavioral or individual action methodology to the social tiers of action and reaction related to changing elements around the individual and community. When this shift occurs, the efficacy of treatments aimed at the behavior rather than the social context falls short.
Assigning transmission to behavior furthers the manipulation tactics of politicians and social leaders either seeking to gain from or refusing to acknowledge the epidemic. The African experience of AIDS is not just a secular power grab, however. Witchcraft, magic, and spiritualization also provide both hindrances to the narrative of prevention and a unique way of understanding transmission within various cultures. Similarly to Haiti, people realize that the disease is present, but attempt to describe it in ways that make it relevant to the culture. Farmer describes medical pluralism as an alternative sought after as a supplement even when Western biomedicine was available. In Haiti, he describes methods of accusation as Maji, or magic a sickness of jealousy and sent by those who have accumulated much wealth at the cost of others without redistribution. Each book begins with a foundation of history and context. Social and political views from previous studies are examined, and an attempt is made by both authors to find a better way to study. For Farmer, that way is multidisciplinary, incorporating epidemiologic, historic, ethnographic, and political-economic theory and for Thornton, it is an anthropological, geographical, and ecological necessity to find a new way to look at this disease and its treatment.
Both authors are trying to find a voice that will reach the people who have the agency to assist in change. The books then attempt to pick out the threads of cultural influence that they see as primarily responsible for the transmission and inhibition of treatment. Once they are isolated, the authors tie them back together in context with their observation of the culture, creating another lens through which they hope those who have the ability to help will view their work. The purpose of both books is to provide a more successful avenue of understanding in order to improve the quality of treatment, and the efficacy of its reach. Farmer’s historical framework is extensive, almost stiflingly so. He spends many pages outlining the history of Haiti dating from Christopher Columbus, as a scaffold on which to describe the country’s history of economic dependence on other countries. This dependence is noted as one of the main reasons for Haiti’s widespread and continuing poverty. Impoverished and marginalized countries historically have less ability to respond quickly and efficiently to disease, and Haiti is no exception. The history of the book builds to provide context for the village of Do Kay, which is essentially populated by refugees relocated for the building of a hydroelectric dam. As a result of unfulfilled promises by the government for electricity and running water, the citizens were forced to find other support, including traveling to Port Au Prince for economic opportunities. The social and political impetus created an opportunity for transmission, as bisexual and homosexual prostitution had become more prevalent.
Throughout the book, Farmer is assertive, aggressive, and demanding that this history and its consequences be addressed and acknowledged. The oppression and historic exploitation, coupled with poverty and marginalization accented by the research from North America with a racist and ethnocentric voice give the reader a valid understanding of how the individuals of Haiti have lived so long without the agency of change. In Uganda, prior to its understanding as AIDS, the disease was called “”slim, a local designation, which established it as part of society in an intimate and connected way. The community accepted the illness as a part of itself and incorporated it into the culture. South Africa’s reaction to the disease was one of outrage and action. The activism associated with AIDS and its treatment in South Africa isolated individuals who were affected by the disease and created a political tool either manipulated or abandoned by the government.
As a contrast to Uganda’s understanding of AIDS as a disease of the people, in South Africa, it never was considered part of the familiarity of daily life. Thornton argues that the activism surrounding AIDS was imbibed with similar fervor to the activism surrounding apartheid, creating civic divides around what in Uganda was a community experience. These divides inhibited treatment by establishing victims of HIV/AIDS as a political tool and created social categorization. In essence, AIDS belonged to the people of Uganda, but it was something completely separate from the norm of the people in South Africa. These cultural divides influenced the methodology and success of treatment that were so vastly different. In contrast to the large social network studies of Thornton, Farmer’s sample size is quite small. The book follows closely three individuals, but it could also be argued that he was treating AIDS patients throughout his time there, and even more as the book was published a second time. The reader does get the sense that rather than suggesting a sweeping socioeconomic change as purported in Unimagined Community, Farmer evaluates the consequences that occur to individuals as a result of conditions already present. These situations and the empathy with individual stories then urge the reader to formulate ideas for change.
Thornton’s review of Uganda and South Africa as two oppositional models of AIDS experience is an interesting range of results in which to view the rest of the continent. Uganda, as one of the places where AIDS has been prevalent the longest, also boasts one of the best containment successes while retaining a high fertility rate. South Africa, however, with one of the continent’s most structured and established public health care systems, bears the weight of an increasing epidemic and lowering fertility. While Thornton believes that the system is failing by addressing the individual behavior rather than the systemic networks of sexuality, Farmer identifies an ever-expanding system of consequences that created the environment where AIDS seemed inescapable and narrows it down to individual experience. Thornton’s comparisons of family values, property, mobility, and social status evaluate disease transmission from a purely anthropological standpoint. The comparison of culturally important roles and transitions of power and agency directly affect sexual networks and the transmission of disease. However, since it is not directly related to discrete pathologies, it is often overlooked by groups who create movements such as the ABC campaign. These are the frameworks of Thornton’s sexual networks: that behavioral changes on an individual level are essentially bandages to an infected wound. In order to treat the wound completely, one must understand the systemic nature of the infection.
The books provide excellent epidemiological and mathematical sustenance for the data-driven reader. While Thornton offers to those not so inclined that they may skip ahead, I would encourage everyone to take some moments and trudge through chapter two of Unimagined Community. There is an immense amount of historical and epidemiological information that places the entire project into a more significant context. Each of the chapters could be read individually, and there is no need to read them in succession, which encourages relevant teaching. He describes in each chapter elements of the epidemic and the contributing factors to its spread, treatment, and awareness. He compares Uganda and South Africa’s historical contexts and shows how their very different histories, political environments, education, and stigmas have created the sexual networks that encourage the transmission of HIV/AIDS and reduce the ease of both discovery and treatment. Thornton’s ultimate hope is that through understanding sexual network linkages and the disruption of them that the transmission of HIV/AIDS would become a community problem to solve, not just an individual one. Bringing the disease forward in a culturally relevant way creates a responsibility for all involved in the community to address, instead of the isolation and “”otherness that the disease has created for many.
In contrast, Farmer holds those in power and with agency accountable for the disease and its progress in Haiti. I found that Thornton’s ideas drove me to problem solve, while Farmer simultaneously inspired me to fly to Haiti to help, and gave me pause to ensure I was avoiding the “”White Savior syndrome. One critique that I have of Thornton compared to Farmer is the lack of ethnographic representation. It’s obvious that the work and research have been done by Thornton, but Farmer’s stories bring personal experience into a very intimate frame. It’s difficult to deny or explain away the occurrence of a situation when one has empathy for those experiencing it. As readers from outside of the culture, it’s almost imperative and certainly helpful to have a connection to the individuals about whom we are reading. With Farmer’s descriptions, it’s inescapable. While Thornton’s theories, study, and voice are convincing, in order to reach the layman, one must speak to their empathy. Of Paul Farmer, I have two critiques. I leave the book feeling informed but ultimately helpless. Because the system is so negatively impacted by outside circumstances, it feels very much as though outside circumstances should make amends. However, the systemic issues are so large that they are outside of the layman’s individual control. The other critique is simply the effect of Farmer’s presence. The reader might wish to understand how his presence and work affected the outcome and experience of the individuals that he has served.
Another question that comes to mind is whether the advent of antiretroviral drugs has changed either author’s ideas about culturally valuable treatment. Since the cost of antiretroviral medications continues to drop, the reader might also ask of both authors how to integrate them in the most effective way. A question for Thornton to consider might be how to invest treatment in sexual network circles without isolating the individual who needs it or placing socially debilitating labels on their illness experience. Other questions arise that would require answers and close connection with local healers, such as herbal or plural medicines’ interactions with the antiretroviral drug therapies. The reader hopes to find a solution or a happy ending, and Farmer makes it clear that happy endings are for the privileged. One does close the books hoping that solutions can be found. While both of these books are initial first steps into considering alternatives for addressing an epidemic variant on many levels of who, what, when, where, and why they are the first step. Reframing the needs of a population in contexts with long-term cultural sustainability is the key for consistent and therapeutic solutions. Both of these books show the very real requirement of understanding where and why a disease occurs when it does and that the disease occurrence is neither a result of a shaming/chosen incident of the infected nor is it discretely pathologic. Instead, very accepted yet complex social networks as addressed by Thornton, and larger systemic failures, as addressed by Farmer, are the reasons why a disease like HIV/AIDS is prevalent where it is.
Personally, I find that the methods discussed here are imperative to any understanding of pathology present in any society. Beginning to look at the holistic environment of a disease, and discerning what preceded its presence is imperative. Secondly, evaluating the underlying transmission routes related to sociocultural norms is more longitudinally effective than treating symptoms or enforcing preventions such as abstinence. Finally, ensuring that the disease is not a separator of society or a creator of “”otherness, but instead finding ways to affirm that the community views treatment as a population need, rather than an individually isolating experience of shame. Even in the US, the shame of being less than totally healthy drives individuals to take sometimes drastic measures to ensure that they are not considered alternative to the standard of health. In other countries where society and community are survival, to be isolated is akin to a death sentence. The reader can see then why the transmission patterns of HIV/AIDS would be difficult to discern. These books came to me highly recommended, and I would remind the reader that they are a good place to start with a new understanding of HIV/AIDS, however, much has changed in the years since their publication. I would encourage the reader to begin with Farmer and Thornton, and then to follow the authors who have built upon their legacy and continued their work.