The internet has developed into an amazing tool for communities and individuals to have access to unlimited information and be connected to many other individuals worldwide. In particular, the community of individuals dealing with HIV/AIDS has also found a place online. Organizations and people have created stories, information, and forums on the internet to be used for both education and building support. However, a very small number of these individuals have access to the information and community support that the internet provides. The importance of these issues and the effectiveness of the internet as a tool to assist HIV/AIDS victims make it reasonable to consider increasing internet availability to these individuals.
Both the Internet and HIV/AIDS have been making significant impacts on human history for over 20 years, but their combined history has just recently begun. From the outset, the HIV/AIDS community has been marginalized and ignored. Even though the first documented human case of AIDS was recorded in 1981, it wasn't until 1985 that AIDS received any serious media attention, with the death of famous television and film actor Rock Hudson. By then, about 12,000 Americans had died or were dying of AIDS, and there were hundreds of thousands more who were already infected with HIV. Nevertheless, it took President Ronald Reagan until the late 1980s, at the end of his time in office, to publicly acknowledge the public health danger of HIV/AIDS. [1]
By this time, it was too late to stave off an epidemic. Indeed, had the government recognized the public health crisis that HIV and AIDS had become, it could have allocated more funds towards research and education geared towards prevention, but because it was seen as a disease that affected mostly “people who fit into rather distinct classes of outcasts and social pariahs,” [2] it was ignored by the general public and the government. The disease began to attract more widespread concern and attention only when it began to affect populations that had previously been considered “safe,” and more mainstream.
Sometimes, the media's treatment of HIV/AIDS was worse than simply neglect; news sources often represented gay men, who made up the bulk of the early HIV/AIDS cases, as deviant and morally corrupt. The sort of disdain that this approach produced was not at all conducive to a wider social movement to stem the tide of the epidemic. Instead, it broadened the previous problem of homophobia into a wider problem of HIV/AIDS phobia. The mis-portrayal of HIV and AIDS also kept the media from fulfilling its important role of informing the democracy that would then act to help stop the epidemic.[1]
Since AIDS began to become more recognized as a serious health issue by the American general public and government, it has begun to receive more attention. In fact, outrage over most of America's original disregard for the disease has turned it into a social justice issue and fueled more support for treatments, such as drugs that improve quality of life as well as social resources to assist people living with AIDS, as well as funding and interest for research aimed at a cure.
In a strange way, the history of the Internet mirrors that of HIV/AIDS. It began about 35 years ago in the relatively small communities of the Department of Defense and research scientists at large universities, and has only recently gained prominence among a wider class of American denizens. As the resources available on the Internet have become more widely recognized, it has become clear that the Internet may be useful for those infected with HIV/AIDS. Since then, it has been used to build virtual communities that provide social support for those suffering from HIV/AIDS, and as a resource for health information. The internet is also becoming used advocacy as well as a way to escape from the pressures of having to deal with the stress of having AIDS.
The internet as a tool for HIV/AIDS patients has become increasingly more helpful and useful in a variety of ways. Expanding and unlimited information on HIV/AIDS topics has made it easier for patients to have access to different views and develop a deeper sense of the methods and opinions available for them to consider. The internet also offers very up to date information that is easily accessible at any time. Patients are now entering the doctor’s office informed and prepared to engage in discussions. This search through information has become itself not only a tool for understanding but also a useful coping technique for patients that makes them more active participants in their personal health decisions. Another common use of the internet is to form communities in a way that forges social connections, and allows for catharsis and commiseration. Chat rooms and one-to-one interactions have brought together many individuals coping with HIV/AIDS into intimate and emotional conversations and friendships. This new network of people has served as both a supportive community to help deal with their situation as well as a new link to exchanging information and understanding. One HIV patient, interviewed by Reeves, claimed that the internet generates an "encouraging effect," since it "puts [him] in contact with men and women who have become infected and who've somehow decided to take that on as a challenge, instead of some kind of personal embarrassment or defeat."[1] In that sense, the internet not only helps people's psychological state, but also their overall health, in that it encourages them not to despair but rather to live and cope with the disease, and "take it on as a challenge." The internet allows HIV positive individuals to form what many of Reeves' interviewees called a community. By making friends on the internet, HIV positive patients are able to strengthen themselves, and find others dealing with similar issues, who can understand what they are going through.
Another result of these communities has been an increasing use of the internet for activism. Individuals have created websites as informational, encouraging, revealing and promotional sources. Information sites have helped bring the importance of the issue into the hands of the general public. Sites are also made for telling auto-biographical stories to serve as a lesson for individuals going through similar situations. In Gillet, an individual tells a story to inspire bravery and help others in overcoming common obstacles. It reads, “I was not prepared to be some test lab rat and die a horrible death, but then one day I looked at my skinny self and decided that if I wanted to give myself another chance I had to decide right there and now otherwise it would be too late.” [2] Other stories are made to show the humanity of individuals with HIV/AIDS and their achievements. These individuals show pride in having overcome what they have and being able to inspire others to be strong and persistent. The internet has also served to help raise awareness about individuals who cannot represent themselves through the media or internet. Information is available showing links of HIV/AIDS to poverty and injustice. Other sites have also been created to express dissent. Both disapproval and disbelief in current treatments or approaches have appeared on the internet. All these portals of information have created an expanding discourse on HIV/AIDS and a supportive community online for patients.
While it seems true that the internet serves as an excellent tool to aid individuals in dealing with HIV/AIDS, there is also a digital divide amongst different groups of individuals with HIV/AIDS. Austin et al. found that Whites are more likely to use the internet for information and support than African Americans. [3] In general, these studies showed that individuals with more education, greater income and who were not part of an ethnic minority were more likely to use the internet as a tool for information and methods for coping with HIV/AIDS. In fact, the vast majority of the people that have HIV/AIDS are those individuals who are not as likely to have access to the information and communities on the internet. In order to extend internet access to more individuals, computer and internet availability would not be sufficient. Education in technology and information analysis is also important for the internet to be useful to these individuals. More availability to information could also serve as a preventive tool for individuals most at risk of HIV/AIDS. More availability to information could also serve as a preventive tool for individuals most at risk of HIV/AIDS.
Amongst individuals with access to the internet, the information and opportunities available online has enhanced both their health and coping ability with HIV/AIDS. The discourse created online communities and friendships, easily accessible and up to date information banks, and a voice for those who are otherwise unheard. The value of the internet to the HIV-positive community only underscores the problem of unequal access. It seems as though a (perhaps) unanticipated effect of the class and educational divide in this country is an unequal access to some of the most useful resources available for those who need them most.
Resources:
[1] Reeves, Patricia M. “How individuals coping with HIV/AIDS use the Internet.” Health Education Research, Theory & Practice. Vol. 16 no.6 Pages 709-719. 2001
[2] Gillet, James. “Media activism and Internet use by people with HIV/AIDS.” Sociology of Health & Illness. Vol. 25 no. 6 Pages 608-624. 2003
[3] Kalichman, Seth C. et al. “Health-Related Internet Use, Coping, Social Support, and Health Indicators in People Living with HIV/AIDS: Preliminary Results From a Community Survey.” Health Psychology. Vol. 22 no. 1 Pages 111-116. 2003