AIDS Experts: Doctors or Vloggers?
This week we read “The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials” written by: Steven Epstein. This reading explained how one of the most stand-out aspects within the field of AIDS research in the United States is the diversity of the people involved in the formation of credible knowledge. They are not all doctors, biologists, physicians, and other health authorities; they are activists, activist publications, and the gay press. Epstein claims the activist movements and participation in AIDS research has contributed to helped construct credible forms of scientific knowledge. This is a surprising claim considering that science tends to be popularly thought of as an independent field difficult and unheard of for non-scientists or medical practitioners to enter into. These AIDS activists were able to change what counts as “credibility” in scientific research. Credibility is a form of power. It is a lot difficult to become credible studying a topic that has been marked by extreme degrees of controversy, uncertainty, and, in particular, politicization such as AIDS research. Epstein explains the overall AIDS movement with the following, “The AIDS movement is broad based and diverse, ranging from grassroots activists and advocacy organizations to health educators, journalists, writers, service providers, people with AIDS or HIV infection, and other members of the affected communities.” This activism AIDS movements was very strong in the early 1980s during the AIDS epidemic. Epstein explained how these activists gained their credibility “through a wide variety of methods-including attending scientific conferences, scrutinizing research protocols, and learning from sympathetic professionals both inside and outside the movement-the core treatment activists have gained a working knowledge of the medical vocabulary.”
Today, AIDS research is heavily funded and understood. The stigmas against AIDS are no longer where they were during the 1980s. 40 years had made a significant change for the better in understanding and dealing with this disease. Today, I feel like HIV vloggers are the modern day activists of the 80s. They are able to use social media to distribute information both personal and medical. They speak and display their experiences regarding HIV and AIDs. They have gone through the process, spoken to the professionals, and dealt with the effects of this disease. I came across a blog which led to this man’s YouTube channel (vlog). http://www.imstilljosh.com is a website made by a man named Josh, who on January 24th, 2012 found out he was HIV positive. In the about section on his blog Josh stated this: “And now, with over 1.4 million views on my Youtube channel, I continue to write a personal blog, imstilljosh.com, where I share my personal and sometimes unique journey with HIV, as well as some buzzworthy HIV news and opinion articles– many that scoop national news. This HIV online publication has allowed me, who was lonely at one time in my journey, to literally meet and hear stories from hundreds in the world.” Josh is an activist. Also included on his page is a link to search the HIV clinical trial finder, powered by Antidote and other informative information such as a form to notify your sexual partner of your condition.
Regardless of the era AIDS/HIV activists will always be present. Whether that be at rallies in the 1980s or in a bedroom with a camera in the 2000s. AIDS activists are participants of scientific research. They have their own experience and their own knowledge which is considered “credible”. Their words, stories, and research are heard by the medical field and by the general public.