No One Asked for This

One of my mother’s dearest friends when we lived in Dallas, my “Uncle” John, was diagnosed HIV positive the year I was born. John was gay. After moving to El Paso, we visited him once or twice, but as his illness progressed and my mother became busier trying to wrangle me into growing up, our contact with him became limited to monthly phone calls and the three tins of polvorones my mother would bake for him at Christmastime.  The cookies were a big deal, every first weekend of December we’d churn out dozens of them to send to John—they were a favorite of his that his mother used to make and served as a depressingly sweet reminder that even though he was suffering through the holiday season alone, his friends out west loved him and were thinking about him. After John’s diagnosis, he lost everything. His friends abandoned him, the stigma of his diagnosis’ ties to the gay community was too great (still, in ’94). His family life, strained for years, fell apart when his body did.

Reading Mark Doty’s, “Tiara,” I couldn't help but think of John, who died alone in his apartment, on hospice, 16 years after he was first diagnosed. A year before he died my mother made a final attempt on John’s behalf to reach out to his family, he has begun deteriorating rapidly and wanted to see his mother one last time. My mother’s phone call ended when his mother referred to him as a “dirty f*ggot” before hanging up. He died alone because the world thought he asked for it. 

My mother, who has been a nurse for 40 years, still remembers the first patient she cared for in the hospital who was dying of Kaposi’s sarcoma (AIDS-related cancer that appears as lesions on the skin):

“We didn’t know what it was but we knew it was bad. The only cases we saw were gay men. They didn’t come to see us until they were already too sick for us to do anything except try and make them comfortable. No one would come to visit them in the hospital, not even their partners. They [other gay men] did not want to be associated with the disease. It was so sad. At the time, we didn’t understand how it was spread and we didn’t wear gloves to draw blood or insert IVs, but it was the eighties. We’ve learned a lot since then.”

A few years ago, I took Roger Platizky’s “Gay and Lesbian Literary Culture” course and as a requirement we were asked to attend the World AIDS Day service that Roger leads every year. After a candlelight vigil around campus, Roger led us to Wynne Chapel where he had a notebook full of people he knew and lost to AIDS and asked us to write down the names of anyone we knew who had an AIDS-related death. After writing John’s name and taking my seat, the service began. I lasted a whopping 15 minutes before losing my marbles over a poem Roger wrote from the perspective of a friend who died looking at his square on the AIDS Quilt. Spending a semester with Roger and going over gay literary responses to the AIDS crisis did not make John’s death easier for me to understand; if anything, it became more complicated.

Now, 7 years after John’s death, inundated in information on homosexuality and homosexual identity formation since taking Roger’s course (and this one), I struggle to understand—who would ever ask for this?

DiscrimiNATION

After reading “Tiara” by Mark Doty the first time, I was confused. I got the impression that the poem was referring to someone who was gay, or maybe a drag queen, or perhaps even transgender because of the reference to the love of “royalty, sashes, and jewels” and the person being in the casket in “a big wig and heels”. I was really intrigued by this poem so I decided to look it up and dig up some more information on it. I learned that it was originally part of an anthology called “Poets for Life: Seventy-Six Poets Respond to AIDS”. With this knowledge, the poem started to make a lot more sense.

                Having grown up in a middle class, primarily white, conservative suburb just south of Denver, HIV/AIDS was not really a topic that was addressed so I honestly was not aware that there was so much blame placed on people who have AIDS, saying, as is stated in the poem, “he asked for it.” From what I understand, this attitude largely stems from misunderstandings about how AIDS is contracted. For example, the misconception that AIDS is always contracted via sexual acts, that it affects only gay people, and that it stems from infidelity. One thing that all of these misconceptions have in common is that they are not topics that people are typically comfortable discussing. Especially not a whole bunch of straight, white conservatives. So, it’s no wonder I was more than a little sheltered from all of this growing up.

HIV Statistics in the US

                It blows my mind, though, that people can think that someone “asked for” AIDS, as if they did something to deserve it. Unless a heterosexual person is perceived as “slutty” which is typically applied to women and not men (which is another topic for discussion in and of itself), if they contract an STI, a stigma isn’t applied to them. They aren’t seen as “tainted” or “ruined”, this stigma typically doesn’t last forever, and they are not turned away from receiving medical treatment. Working in the ER at Texoma Medical Center we see lots of people who come for STI checks and no one bats an eye. We don't make assumptions about their sex lives, we just give them treatment, and everyone moves on with their lives. However, for those affected by AIDS, being denied healthcare due to their “condition” is a very real thing and these people don't have the luxury of just getting on with their lives as being diagnosed with AIDS can affect every aspect of an individual's life - from work to family, and everything in between. According to the People Living with HIV Stigma Index, approximately 1 in every 8 people with HIV are not given medical treatment due to the associated stigmas.

               

The World Health Organization notes that fear of stigma and discrimination are the primary reasons for which people are hesitant to get tested for HIV to begin with and it seems they have every right to be reluctant. If you thought you might have HIV but you knew that even if you got tested you still might not receive treatment, would you feel motivated to get tested? Probably not. Keep in mind that discriminatory behavior towards people affected by AIDS is a global issue. A lot of these misconceptions are held by more than just the common person, even medical personnel in many countries hold these stigmas.

                I think another important part of Doty’s poem is addressing the fact that desire is natural. The last few lines say, “what could he do, what could any of us ever do but ask for it.” Whether our society likes to address this fact or not doesn’t make it any less true - everyone has desires. It is only natural for people to have sexual desires and to reach out for human contact. Who is anyone to judge how someone chooses to fulfill their desires? Contracting HIV is not a form of punishment, just like STIs are not punishment. They are both things that happen to many people and they are both things that should receive medical treatment void of judgement and discrimination. Through better education on HIV/AIDS, I think it is very possible to lessen the discrimination of those that are affected worldwide.