AIDS and Its Narratives

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Currently, I am completing research for a final assignment that investigates AIDS in literature.  From my research, I have found more first-hand accounts than expected.  Letters, emails, poems, and interviews, individuals with AIDS tend to want to tell their stories, despite the pain (perhaps in spite of the pain).  I’ve found that the illness makes individuals candid.  Their all-to-real experiences make them seek an invisible audience to tell a story.  A confession of sorts.

Perhaps the desire to tell stories comes from a troubled past.  Three decades of an AIDS crisis has resulted in the rising up of a public – a community of individuals who seek to become visible.  How do you convince people without AIDS what the illness is like?  In fine detail.

Like the following:

1001Stories

Check out the stories from around the world (there are some finicky issues with the site, but bear with them if you are interested).

When you are researching AIDS, I find you have to start with the timeline.  The 1980s was perhaps the decade that defined the epidemic most acutely.  AIDS became known as “the gay disease,” for various reasons, including the most obvious: its impact on gay male populations at the time.  Yet, along with these statistics, AIDS victims were rising in demographics throughout the world, especially in Southeast Asia and Africa.  The disease – for a few years – isolated the average, middle-class, (white) demographic (a.k.a the typical ‘family’ demographic).   Suddenly, ‘normal’ lifestyles were threatened by this mysterious disease, a disease even celebrities could get.  AIDS became its symptoms.  The emaciation, wearing of the immune system, lung disease, and general degeneration of the person became the degeneration of the population associated with it.

The 90s brought on an uprising.  AIDS activism from groups like ACT UP and TAG (Treatment Action Group) sought to not only treat AIDS, but also to make AIDS victims and their families visible to a public that was ignoring, if not discriminating against, their struggle.  ACT UP, for instance, was a crucial player in getting AIDS drugs (antiviral medication) to the population, especially those living in shelters or on the streets.(Why were some on the streets?  Marginalization from medical institutions, their families, friends, communities, etc – all sorts of reasons).  Research for a cure – or at least a vaccine – has doubled since the 90s, leaving many with AIDS the ability to live relatively stable lives for many years, given that they take medication regularly.

Over the past ten years the internet has been a hub of stories from people with AIDS.  From digital forums, blogs, to websites such as 1001 Stories, AIDS has become a topic of discussion in open networks.  This is one instance where digital media has helped to revolutionize the perception of a disease that otherwise stigmatizes anyone associated with it.  Prior to such open communication, the mystery of the disease seemed all the more dangerous.   AIDS communities were more isolated.  Recently, the American government passed the National HIV/AIDS Strategy in order to take more proactive measures against AIDS and discrimination against the disease.  The proposed strategy will allow individuals with and without the disease to benefit from the outcome of the strategy’s goals, including increase awareness.  Proactive treatment attempts to get at the core of the illness’ outbreak – so where the illness can be treated the most quickly – and works from there to treat the population.

AIDS is becoming redefined each decade.  This decade, voices of past and present AIDS patients has added to the treatment of the disease.  Specifically, those with AIDS become more human.  Their stories are a chronicle of a very personal experience with the disease, yet also the treatment, and the desire for a new life.  Instead of being merely symptoms, AIDS becomes the people who are trying to beat it, live through it, and thrive again.  Personal narratives, such as those on 1001 Stories, is crucial way of making this disease a narrative, or a story that could be familiar with us all.

Perhaps this is a miracle, of sorts.  Let’s see what the next decade has to bring.

About dontpanictrent

DON'T PANIC: A Trent Graduate Student Blog

2 Responses to “AIDS and Its Narratives”

  1. I think your topic and research is very worthwhile. I just saw an exhibition at the New York Public Library, http://www.nypl.org/events/exhibitions/why-we-fight/more
    which examines the history of AIDS activism and the work of individuals who “tended the sick, challenged prejudices against people living with HIV, educated their communities, and fought for resources and research”. I think that a lot of the activisim against AIDS so far has come from the personal experience of those who lost someone, as the 80’s were not so long ago (to some of us). Many of the people who remember friends who lost their lives slowly and brutally to AIDS grew up in the 60’s when free love, having multiple partners etc became prevalent and I think some of us just feel lucky we didn’t get it.

    • Looks like a very interesting exhibit. AIDS seemed to catch people off guard, since it was a ‘mystery disease’ for so long (I believe it was around 1984-1985 when it began to get a name and a proper diagnosis). Those tending to people with the disease was literary the front lines of activism, who were responsible for dispelling many myths about the disease. It’s been an incredible struggle – I was only very small when I first heard of the disease, but I recall the activism on TV – and, yet, activism has pushed for antiviral drugs that have allowed AIDS patients to live fuller lives.

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