Am med week 14
Questions
This week, through our discussion of the documentary How to Survive a Plague, an excerpt from Abraham Verghese’s My Own Country: A Doctor’s Story, an essay written by historian Allan Brandt, and two chapters in Jennifer Brier’s Infectious Ideas: U.S. Political Responses to the AIDS Crisis, we examine the AIDS crisis—activist and political responses, the push-pull between activists and researchers, and a physician’s account. Brandt’s article, written in the midst of the AIDS crisis, historicized syphilis to identify lessons for meeting the challenges of HIV. I will also ask questions below that circle back to David Oshinsky’s history of Bellevue.
Historian Allan M. Brandt argues, “Infectious diseases constitute complex bioecological problems in which host, parasite, and a range of social and environmental forces interact. No single medical or social intervention can thus adequately address the problem” (380). How does Brandt use syphilis to illustrate this argument? In what ways did the history of HIV demonstrate this argument?
Brandt asserts that epidemic disease “constitutes a natural experiment in the ability of social institutions to respond effectively and humanely to a biological crisis” (380). How did U.S. social institutions respond to the AIDS crisis? What inequalities and vulnerabilities did the AIDS crisis illuminate?
If we only had How to Survive a Plague as a source, what assumptions might we make about AIDS and AIDS activism? How do your other readings challenge those assumptions?
If we only had the excerpt from My Own Country as a source, what assumptions might we make about AIDS and medical responses to AIDS? How do your other readings/the documentary challenge those assumptions?
What were some of the aims and strategies of ACT UP (AIDS Coalition to Unleash Power)? What sorts of resistance did the organization face? What sorts of internal difficulties did the organization face?
In what ways did AIDS activists extend ideas advanced by other social movements? What new arguments did AIDS activists advance? How did they alter existing ideas?
How did the AMA respond to AIDS? Oshinsky contrasts Bellevue with the AIDS Unit at San Francisco General Hospital. What were the differences? What factors shaped those differences? How did those differences shape how people experienced AIDS in the two cities? How did the situation in Tennessee/Virginia compare to what was happening at Bellevue?
What does Abraham Verghese’s perspective bring to our understanding of the early AIDS crisis?
In many ways Brier paints a very different portrait of the earliest days of the AIDS epidemic than either of the other sources. What does AIDS activism look like according to Brier? What kinds of activism had laid the groundwork for the response to AIDS in the gay community?
How did ideas about gay liberation and feminism shape responses to AIDS?
Brier examines conversations in the gay community “made possible by the scientific unknown” (14). Why might this period of unknown be so significant?
Post 1
AIDS activists extended ideas advanced by other social movements such as. While much of the focus in AIDS activism was centered around the gay community, and thus became in many ways an extension of the gay liberation movement, it also advanced the feminist movement, the fight against racism and inequality, poverty, and discriminatory healthcare.
I think that the chapter by Brier, “Drugs into Bodies, Bodies into Health Care The AIDS Coalition to Unleash Power and the Struggle over How Best to Fight AIDS,” provides some of the best examples of how the fight against AIDS crossed movements and advanced other ideas. This chapter focused on ACTUP, as did the documentary How to Survive a Plague, which was one of the most prolific groups in the fight against AIDS. While ACTUP was initially organized to focus on ways to motivate the government and wider society to acknowledge the AIDS epidemic and also to actively work to research and treat the disease, it was not long before other, wider social issues, were recognized as contributors to the problem. I think that this is best born out in the examination of the creation of different committees within the organization that concentrated on different aspects of the epidemic. First, there was the Majority Action Committee, named so because they were meant to represent the majority of people with AIDS: People of Color. This group identifies one of the first issues that continues on from other social movements, the fight against racism, and the disparities that racism creates in healthcare, housing, and information. (Brier, 162) This committee recognized that the fight against AIDS was more than a fight for drugs and treatments or even a cure, to combat AIDS we would also have to fight racism, because the majority of AIDS cases were POC. The Womens’ Caucus was another committee within ACTUP. This committee recognized the need to advocate for women with AIDS and to include lesbians in the conversation about AIDS and the wider conversation about gay liberation. Initially comprised mostly of lesbians, a group that had largely been excluded from other women’s movements, the Women’s Causcus fought to change the definition of AIDS so that women could be properly diagnosed and have access to Social Security, something the male members of ACTUP had fought for and acheived, but had excluded women. Therefore, there was a distinctly feminist quality to aspects of the fight against AIDS. The next committee that highlighted other social movements was the Housing Committee. Initially, the goals of the Housing Committee were simple, to find housing for AIDS patients who would otherwise be homeless. This problem highlights more than just housing discrimination or shortages, it brings the greater issue of social and economic disparities. Regardless of whether a person has AIDS or not, if they do not have a home to live in, adequate food and water, and the ability to keep clean, they will be at much greater risk for serious illness. If the goal is to reduce infectious disease of any kind, including AIDS, these problems must also be addressed. Thus the fight against AIDS is also a fight against poverty. Finally, the committee that dominated the documentary, and seemed to steer much of the work that ACTUP did, was the Treatment and Data Committee. These were the people fighting for drug approval, for the drugs to be affordable, and for the people who were effected by AIDS to have a voice in the way it was being researched. This committee has implications for the movement around healthcare, and affordable medical treatments,as well as education. While in the latter years of the AIDS fight, when T&D had split from ACTUP and formed TAG, they began to work with pharmaceutical companies instead of against them, they advocated for the treatments to be affordable for patients, because a treatment was useless if the patient could not afford it. In the end, they found a way to get the drugs to the patients, and make pharma massive profits. However, outside of medication access, there is a bigger conversation about healthcare that grew along with anti-AIDS movement. For many AIDS patients they did not have health insurance, nor did they have Medicaid or Medicare, and thus diagnosis and treatment were often neglected or denied until the patient was critical. This neglect prompted AIDS advocates to push for healthcare reform, and begin a converstaion about universal healthcare in the US, something many are still fighting for. Lastly, this group was also focused on acquiring and disseminating knowldege and information about AIDS, treatments, trials, and ways to prevent being infected. They fought for transparency in the ways drugs were being developed and tested, as well as the direction of research into the disease itself. They used education about AIDS as a way to fight it by dispelling the fear and panic that accompanied it due to lack of knowledge. This is still something that needs to be improved when it comes to healthcare and medicine. While in todays world we can go online and Google our symptoms or diagnoses to gain knowledge about them, that has not always been the case. Even with that ability, most people lack the scientific or medical knowledge to properly utilize the information they find, and they often jump to the worst possible scenario. Medical professionals, not just clinicians but writers, pharmacists, etc., need to do a better job of explaining conditions and treatments in laymans terms that their patients can understand. I worked in guest service for many years, several at Magic Kingdom in DisneyWorld. Disney has acronyms for everything, rides, stores, costumes, schedule changes, you name it, theres an acronym for it. One of the main things that they used to reiterate to us regularly, was that when we were talking to guests we had to refrain from using industry “jargon,” or in our case acronyms. It would do no good for me to say, ” hey, I’m gonna get an ER and then go to WOD for a while and I’ll meet you at DTD when you’re getting bumped out.” Unless you have worked at Disney as well, you won’t know what I’m talking about. In the same way, when a medical professional is explaining an illness, treatment, or diagnosis to a patient, and they use nothing but Latin names and tell you the names of complex tests, or drugs, for most people thats gibberish, and therefore useless. Unless a patient is a medical professional themself, they will not understand big medical terms, medicine needs to be made intellectually accessible to non-medical people, something that ACTUP recognized early on.
The fight against AIDS also helped to advance these movements in a general sense. Racism is still a huge issue in the US, however, the generations of people who were born in the 1980s and 1990s, and now into the 21st century, are some of the most diverse and progress has been made, even if there is still a long road ahead. Feminism has also advanced, women are on more equal footing now than we have ever been, even with setbacks such as the overturning of Roe, the progress cannot be denied either. There is still a long way to go for feminist activists, and recent events seem to be bringing women’s healthcare issues, at least, back into the national conversation. Universal healthcare, something that was a radical idea during the AIDS fight, is not so radical anymore, and the fight for affordable drugs has dominated much of the political discourse in recent years. Socioeconomic issues have remained in the public eye, and there are movements to resolve these issues, but little has changed. Finally, AIDS activism advanced the gay rights movement drastically. When the AIDS epidemic was finally under some semblance of control, there was a shift. Homosexuality became less of a taboo in society at large, and was even represented on television and in movies. The focus shifted from liberation and AIDS to marriage equality, which the 2015 Supreme Court decision upheld, and will likely soon be protected by legislation with the Respect For Marraige Act currently before Congress. In a general sense, I think that the fight against AIDS spurred a new era of advocacy, but not in the traditional way. While ACTUP used acts of civil disobedience and protests to make noise, and groups continue to do so, the manner in which activism was practiced changed in the 1990s. I was born in 1983, I don’t remember many instances of civil disobedience or mass protests, with the exception of the race riots, meriting mass media coverage. What I do remember is TLC singing about safe sex and wearing condoms as accessories, TV shows becoming more diverse and discussing big issues, women being represented in media as more than a housewife and being told we could be anything we wanted, activism became less in your face, and more represented on your screen. I think that this largely holds true today as well. Once again it has morphed as media has changed, and we still protest and march, but much more of it is happening online, through social media, and other channels.
Post 2
The various perspectives offered over these two weeks related to AIDS activism were enlightening. I had heard of ACT UP prior to viewing How to Survive a Plague, but was not very familiar with the operation of the organization or the internal arguments over ideologies and approaches. The documentary left me with the impression that ACT UP was a group of young people, many of whom were not infected with HIV/AIDS themselves, that seemed to enjoy the thrill of activism and staging events that drew the attention of media outlets. While ACT UP members were clearly passionate about their cause, their tactics come off as childlike tantrums. If How to Survive a Plague were my only source regarding the topic of AIDS activism I would be left wondering how such a disorganized and naïve group was ever able to mobilize change. It is also a very limited representation of the community that was suffering from HIV/AIDS and provides a stereotypical profile of the typical “activist”—young, liberal, loud, and pushy—living in urban areas.
I had first read My Own Country by Abraham Verghese around 2008 (in fact, I think I recommended it to someone early on in this course without realizing we would be reading some of it!). Dr. Verghese’s account offers a much different picture than the one painted in the documentary film. He provides us with the more conservative, rural perspective of the AIDS crisis. Instead of the frame used in the documentary where themes of adversarial interaction and a sort of “good guys vs. bad guys” scenario is created, Dr. Verghese’s focus is more on the issues surrounding morality and providing compassionate care to dying patients while working tirelessly to find a solution without much community support. If his book were the only source that I had to evaluate the HIV/AIDS crisis I would likely believe that the medical community was dragging its feet to find treatments and cures due to the stigmatization of those who suffered from the disease. Dr. Verghese provides evidence of the struggle involved in humanizing disenfranchised and marginalized populations.
In the chapters from Jennifer Brier’s book we seen further variety in AIDS activism. I found it interesting that Brier immediately echoes two concepts that we have previously encountered in our readings related to other diseases (Brier, 11), the first being the connection between “personal” and “political” and the second being the sentiment that “gays are worn down by our oppression”. We have seen these ideas recently regarding issues of reproductive freedom in the context of both the civil rights and feminist movements. This is an excellent example of a frame extension being used to provide the basis for a social movement—in this case bridging the gap between feminism and HIV/AIDS activism. Brier also mentions Our Bodies, Ourselves and draws parallels between community approaches to women’s health and the development of similar programs regarding gay sexual health, such as the “VD van” and “Meridian” groups (Brier, 17-18).
I found Allan Brandt’s article to be an effective way to bring everything from this semester full-circle. Brandt details how the societal response to the AIDS crisis encompassed a variety of attitudes that have become common themes throughout our exploration of various lenses of illness and disease. We once again see what boils down to the fear of social breakdown manifesting itself in the way we respond to disease. Through the lens of syphilis, Brandt explains how a lag that exists between material culture, in this case recognition that condoms can effectively prevent STDs, and immaterial culture like the value systems surrounding “moral” sexual behavior and promiscuity, can have lasting consequences related to institutional responses in times of crisis.
Post 3
The article, “The Syphilis Epidemic and its Relation to AIDS”, explores similarities between syphilis and AIDS. Allan M. Brandt noted that, “AIDS, like syphilis in the pasts, engenders powerful social conflicts about the meaning, nature, and risks of sexuality; the nature and role of the state in protecting and promoting public health; the significance of individual rights in regard to communal good; and the nature of doctor-patient relationship and social responsibility.” (379) Brandt’s remark about the “nature of doctor-patient relationship” (379) reminded me of the Verghese reading where he narrates his position as a doctor attending to an AIDS patient and meeting with his family. Doctor-patient relationships seems like a recurring theme throughout this class where it is critical for doctors to establish open and more humane relationships with their patients to realistically help them with their illnesses, rather than target them as a science experiment or someone who, in the stigma surrounding AIDS patients, are “sexually deviant” or a drug addict who is “unworthy” of treatment and care.
I thought the Verghese reading provided a personal insight from the view of a physician and a family of a loved one who was diagnosed with AIDS. The Verghese reading demonstrated the fear of AIDS patients including doctors’ families where Verghese noted that his wife “was merely frightened, as any wife or mother would be, as so many were in the days where we understood so little about AIDS.” (75) when she found out he would be treating an AIDS patient. Although it is important to gain a perspective from a patient, their families, and the medical workers’ perspectives, I think it is equally critical to gain a perspective from doctors or nurses’ families. This is especially important when we think about the COVID health workers who worked tirelessly every day and night while many had no knowledge of COVID and if their loved ones would be safe.
Chapter one of the Brier reading explored the varying responses and tensions within AIDS activists groups that resonated with the documentary in many cases where the documentary showed footage of differing AIDS activists groups butting heads over how to respond and act towards the government and how they should protest. Brier noted that Rovert Berowitz and Michael Callen “provided readers with practical ideas for how men could have sex in new ways.” (34) to help gay men to practice safe sex if they wanted to. This was a form of activism discussed in the documentary where where activists wrote pamphlets to educate gay people about new drugs and potential treatments for AIDS. The Brier reading additionally showed how the gay community fought for not only treatment and equality within the health community, but fair treatment in society as a whole. Brier shows how the responses from gay communities to the AIDS crisis represented a larger picture that focused on gay rights and the challenge of social norms, inequalities, and stereotypes that were placed on them.
Chapter 5 of the Brier reading discussed many of the activists we saw in the documentary from last week. I appreciated this chapter because it provided me with a bit more insight and context of the individuals and the organizations, what they stood for, and how they protested for change. I found it particularly interesting when Brier noted that “They began by building a consensus for the protest among ACTUP New York members, providing them with an “FDA Handbook,” written by Jim Eigo and Mark Harrington, that detailed the role of the FDA in AIDS treatment.” (166) This approach was interesting to me because ACT UP educated their members on how the FDA functioned and why they were protesting the FDA in relation to their role in AIDS treatment and then after they educated their members they protested. The various ways of protests described in chapter 5 of the Brier reading reminded me of the documentary, especially when the activists threw their loved ones ashes who had died from AIDS on the Whtie House front lawn. This form of activism was one of the most personal, emotional protests that I have witnessed and it shows how actions speak louder than words.
On a side note, I really enjoyed this course and was surprised at the complexity of the history of medicine and disease. I loved hearing everyone’s point of views and interpretations, especially this semester when everyone had very informative and sometimes differing views on some of the issues embedded within medical history. I hope everyone has a great and safe holiday break!