A Theory of Actual Reality* (by Nina Rockwell)

Introduction

images-3Last week I was sitting on an exam table in Planned Parenthood. The lights were aggressively bright and the reproductive system map posters removed all true humanness from the body. Pamphlets about different forms of birth control and family planning options lined the countertop across from me. I sat, covered from the waist down in nothing more than glorified paper, holding a cotton ball to my bleeding fingertip and panicking. My head was filled with thoughts of risk factors, party drugs, the historically unsafe ways in which I have treated my body, and the grand what-if. As an ex-drug user and as a person who partners with ex-drug users and men who also like to sleep with men I’m considered a mid-to-high-risk individual when it comes to transmission of HIV.

I’ve been tested for HIV six times in the past ten years since my lifestyle heightened my risk of transmission. In those ten years an estimated 500,00 people in the United States have tested HIV+ (this number is based on the average 50,000 new HIV infections per year as noted by aids.gov). Every time the clinic tech pricks my finger for a blood sample I go from the general assurance of my own good health to a state of full panic. The ten minutes it takes for the test to be processed stretches for what feels like hours.

I am twenty-five years old, and I am HIV-negative and STD-free. My childhood best friend was twenty-two she died from complications of AIDS. For Tracy, she had no choice. She was a part of a generation of children that were born with full-blown cases of HIV/AIDS and battled it for her entire life. She didn’t make any questionable decisions with her body or lifestyle to contract HIV. This generation of children was unwanted or their parents weren’t able to care for them, and many of them were abandoned at hospitals. Tracy was born at a hospital in Florida where two nurses, Steven and Roger, saw how many of these babies were being left behind and started to take them into the home that they shared. Tracy was raised by her foster parents until she was 18. Steven and Roger took five children in this same situation into their family. This, unfortunately, is a rare case. Even now, the lack of accurate and concrete information about the HIV/AIDS epidemic is astounding. In the late 1980s these children were considered untouchable and many of them were not shown the love that this couple had in their hearts.

Brooke Minters, in her Seattle Times article First Wave of Babies Born With HIV Nearing 30, talked to two adults who, like Tracy, were born with HIV. Lafayette Sanders speaks to his experience in a similar way as many HIV+ activists, “My main goal is to get people to talk about HIV. I want to destigmatize (sic) it” (Sanders, Web). Many people see HIV as an opportunistic disease, and these individuals are challenging that idea by using their diagnosis and experience to educate the masses. Folks like Sanders are telling the world that they didn’t have a choice in the life they were given and that the shame needs to be lifted.

In the past a HIV diagnosis meant death. The virus was unfamiliar and spreading rapidly because no one knew the many ways it was transmittable. In 1987 the FDA approved azidothymidine, also known as AZT. This became an effective management treatment for HIV and began to change the path for those who had the virus. As Michael Byrne puts it in his article A Brief History of AZT, HIV’s First ‘Ray of Hope’, “A brutal, invariably terminal condition became a chronic manageable condition, like diabetes. That in itself if one of the greater conquests of modern medicine” (Byrne, Web).

The advances in medicine and the way we’ve come to see HIV as more than just the “gay cancer” or a junkie’s disease has made the quality of life for individuals with the virus quite a bit better, but the disease is still spreading. Most young people will not be taught anything about it in school, and this is a problem. The lesson plan is simple, and the following information comes from aids.gov, a public website: HIV is transmittable through blood, semen, rectal fluids, vaginal fluids, and breast milk. Being an IV drug user (using needles to get high; heroin, methamphetamine, etc.) raises your risk of transmission if you don’t use clean needles. Sharing drug tools is a high-risk activity. When it comes to seminal and rectal fluids the virus travels through small tears in soft tissue, which is why penetrative anal sex (most commonly seen as a homosexual act, hence the supposition that HIV is a “gay” disease) is a practice that can lead to transmission. Less common is organ transplant or blood transfusion, but it still happens.

The number one way to prevent infection is to know your status. Get tested regularly (every 6-9 months as that is the presently understood incubation period of the virus). If you are a drug user, use clean needles and never share them. Many programs such as Outside-In run clean needle exchanges to do their part in helping end transmission risks. Using protection while having sex is another way to prevent infection. Body care is a major part of a relationship. If you care for yourself and for the physical safety of your partner (or whoever you’re having sex with) it is important to disclose your status. It can be very scary to do and can end in a partner leaving or choosing to not be sexual with you, but it is absolutely imperative. It’s actually illegal in many states to NOT disclose your status if you are HIV+. In Washington, for example, it is a Class A Felony to not disclose your status to sexual partners, and is considered felony assault (American Civil Liberties Union, Web).

Public schools, especially in areas of the country that are more conservative or religious, frown on the presentation of this information because it means talking about sex, homosexuality, drug use, and death. To talk about these things means accepting that they are real, and in parts of the country where children are still being raised to believe that homosexuality is a one-way ticket to eternal damnation or where it is believed that gay people are sick and need to be institutionalized (yes, there are still people who believe this), to accept that these things are real would be an act of indoctrination.

How to Get Involved

The important question now is how do we end transmission completely. Across the board there is one answer that comes up more than any other. This comes from activists, educators, scientists, and so many others who are fighting to change the course of an epidemic. The answer is to talk and to listen. The answer is to educate. If an entire generation of people can be educated in the ways transmission happens then they can make better choices with their bodies, and if this education comes with information about the disease itself and why the shame attached to it is unnecessary, they can learn to show more respect for each other and for themselves.

Sitting on that exam table, I thought about how many bad choices I had made with my body and how I was still going to be okay. I thought about Tracy, and how she had choices made for her and is no longer living. I thought about the radical teenaged activists I’d met over the years working with Outside-In and Cascade Aids Project, and how much hope they gave me. We’ve come a long way, indeed, but we still have to fight until HIV transmission is a concern of the past.

To do your part in the movement step one is to get tested. Planned Parenthood does walk-in HIV testing, as does Cascade Aids Project, Outside-In, and all County medical clinics. Invite your friends to come along and get tested together. After that, donate to HIV awareness programs and organizations, sign up for AIDS Walk or make a pledge for someone who already is registered. Most importantly, talk to each other. Educate your children if you have them, educate your peers, ask questions, do your research, be open and honest with your partners and encourage them to do the same. Transmission can end sooner than we think.

Works Cited

Aids.gov. 9 Aug 2015. <http://aids.gov>.

Byrne, Michael. “A Brief History of AZT, HIV’s First ‘Ray of Hope’”. Vice. March 21, 2015. 10 Aug 2015. <http://motherboard.vice.com/read/happy-birthday-to-azt-the-first-effective-hiv-treatment>.

Minters, Brooke. “First Wave of Babies Born With HIV Nearing 30”. Seattle Times. October 9, 2010. 10 Aug 2015. <http://www.seattletimes.com/nation-world/first-wave-of-babies-born-with-hiv-nearing-30/>.

United States. American Civil Liberties Union. “State Criminal Statuses on HIV Transmission”. ACLU. 2008. 11 Aug 2015. <htpp://www.aclu.org/state-criminal-statuses-hiv-transmission?redirect=lgbt-rights_hiv-aids/state-criminal-statuses-hiv-transmission>.

*Title taken from RENT, and early 1990s university studies of HIV by the same name (Theory of Actual Reality) that were shut down or defunded.

Annotated Bibliography

Aids.gov. 9 Aug 2015. <http://aids.gov>.

This website is surprisingly informational for a government website. It’s the go-to website for all necessary information on HIV/AIDS in the U.S. It was one of the most helpful resources for this paper because it is non-biased and shame-free.

Byrne, Michael. “A Brief History of AZT, HIV’s First ‘Ray of Hope’”. Vice. March 21, 2015. 10 Aug 2015. <http://motherboard.vice.com/read/happy-birthday-to-azt-the-first-effective-hiv-treatment>.

Byrne’s article talks about the first wave of effective management meds for individuals with HIV. He goes into some information about the FDA and how ATZ was one of the fastest approval turnovers in the history of the FDA. He also talks about AIDS deniers. This article was really helpful because it puts into perspective how the quality of life can be made better for folks living with HIV.

Minters, Brooke. “First Wave of Babies Born With HIV Nearing 30”. Seattle Times. October 9, 2010. 10 Aug 2015. <http://www.seattletimes.com/nation-world/first-wave-of-babies-born-with-hiv-nearing-30/>.

Minters talks to and about a couple of adults who were born HIV+ and uses their story to explore the status of HIV as something other than a death sentence. It is really helpful to see these individuals be so supportive of widespread education and knowing that this is the only way to truly make a change.

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2 comments

  1. JoAnna

    I have to say I think it is pretty brave of you to be so open and honest in this academic setting. It can be hard telling people about the mistakes and embarrassing things we have done. I think your story is going to be extremely beneficial for a lot of people out there. I like that you are putting a face to this disease instead of in being considered the “gay disease”. It is really easy to forget that all these statistics and numbers out there are actual people struggling. I really enjoyed your personal story and the facts. I honestly have not read much into HIV or AIDS. I know what effects it has and drugs that are prescribed for it but I had no idea breast milk could pass it on. It just goes to show how little people know.
    I can see how HIV got a bad name but we live in such a progressive age it is time to get rid of the stigma that all people with HIV and AIDS did it to themselves. Like your friend Tracy, many people are born with it. They did nothing but have the unfortunate luck of being born to a mother with HIV. I really enjoyed your advice on how to help out. I think the needle exchange programs are helping reduce the transmission rate but I don’t think it will ever really go away. There are always going to be high risk people out there that will eventually contract this disease. I just hope that modern medicine will take some plunges forward and get a cure for this condition. You are a very talented writer and I loved reading your post.

    • I agree, Joanna! The honesty here is refreshing and lends so much to the power of her piece! This is a good reminder that we should all speak truth…and inspire others with that truth!

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