Notes from an anarchist communist from Houston, Texas living with HIV and Aids on living with the condition and a radical response to the epidemic.
Radical Queers and Anarchists do not talk about this enough. I was diagnosed HIV positive in 2009, likely seroconverted in 2008, and was diagnosed with AIDS in 2011. I have recovered rather well since then, and have adjusted to what may seem fortunate and hopeful in comparison to AIDS victims in other times and places. Just as different struggles mean different experiences, navigating through capitalism as a person living with HIV has been painful. HIV and AIDS has everything to do with capitalism as well.
What it means to live with HIV:
Living with HIV means taking toxic pills the size of jolly ranchers on a daily basis, sometimes multiple times a day, in fear of imminent death should you not do so. It means dealing with opportunistic infections and hospitalizations even while your are recovering from an AIDS diagnosis. It means awkward conversations and tears from friends and families. It means fear and suspense while you wait for blood work. It means worrying about obtaining and paying for your medication (more below) without which you may die. It means side effects from anti-retrovirals from which we know little about the long-term effects. It means walking into AIDS clinics and worrying about being seen, it means judgement and lectures from doctors, it means worrying your virus might mutate into drug resistance, it means a looming fear when you pick up the prescription your medical insurance will go through and you won’t be left without your medicine, it means worrying about your boss firing you when the insurance company commits a HIPPA violation and tells them to ask you why your healthcare is so expensive, it means dealing with people’s ignorance of how you actually contract HIV and having to tell them you can share the same glass and the same mosquito can bite you, it means complexity in moving to another state and making sure you’re insured there, it means your disease coming between you and your HIV negative partner, it means having to worry about all these things for the rest of your life.
It can be difficult to not feel an overwhelming shame and sense of defeat as someone living with HIV. As with all of life’s challenges, these issues weigh harder on working class people and other marginalized people. I do not know the experience of someone living with HIV/AIDS in the Third World. I don’t know what it’s like to be a person of color living with HIV. I don’t know what it’s like to be a sex-worker living with HIV. I don’t know what it’s like to be a woman living with HIV. I could imagine my experience could be a lot harder.
The Marginalization of HIV/AIDS and Serophobia1 as a system of oppression:
As does race, gender identity, sexuality and disability can all affect your relationship with capital and serve as barriers in the navigation through capitalism we’re tempted to call “life”, having HIV has much the same effect. The fights for education, access to medication and blood work, housing, workplace protection, are all relevant to the struggle for those living with HIV. Have we had victories? Absolutely. Have we “arrived” at liberation? Absolutely not.
While we have things like the Ryan White Care Act and some folks have a chance at an abnormal life with HAART medication (highly active anti-retroviral therapy), we still have folks getting HIV at alarming rates, even within the very HIV-aware queer community. We also still have a suicide rate five times higher than the general population. People like myself still get AIDS because access to medication is a bureaucratic circus at best, and being uninsured with HIV means you have been sentenced to death.
Yet somehow, it’s us that society is afraid of. We’re the diseased and afflicted. We die, and you go on never knowing our struggle. I don’t think many of my HIV-negative friends actually have these notions, but regardless of how you feel about it, this is what has been dictated by the ruling class and oppressive social forces. The ruling class is not only white, male, abled, rich and heterosexual. It most surely is also HIV negative.
The Queerness and Ableism of HIV:
HIV is queerness. Not everyone with HIV is gay or trans* (obviously), and not every queer is HIV positive. If you have an understanding of Queer as an unstable place to inhabit based of normativity vs. deviance, and being born into conflict with normativity, then one might certainly see how society might “queer” someone living with HIV. Sexual and social relations will never be the same with HIV. AIDS jokes induce a traumatic self-loathing and discomfort. My experience, is most people are private about their HIV status and usually wish to control and limit who knows. For me, this experience as I type this is eerily reminiscent of the pain of coming out of the closet with my queerness in the first place.
AIDS, being the deadly and progressive disease that it is, certainly entails a disability. Even as I recovered from my own AIDS diagnosis and my blood work showed improvements, I still could feel the impact of the opportunistic infections I contracted while I was unmedicated. I have ailments I will have for years to come (neuropathy, arthritis, neurocognitive variance, visual issues). No one needs to be told that on a physical basis, AIDS will destroy your body even if you survive it, and it will leave its mark.
I cannot describe the difficulty of publicly going through a disabling illness, while not being able to give people the whole story because it means telling them that you have AIDS. Your friends and family watch you suffer but cannot know why for one reason or another. Even after giving up on trying to lie and keep track of who knew, I found myself pondering the same thing “Am I okay to tell them I have HIV?”, because there’s an overwhelming fear of losing control. On a societal level, we can see the forces of sex-normativity and ableism at work.
Big Pharma, healthcare and anti-retrovirals:
One of the things many people are unaware of is the cost of HIV anti-retroviral medications. The retail cost of these medications is about $2000-2500 a month, or roughly $60 a day. That is entirely too much for any working class person to pay for. For us, to be uninsured means death, it’s not an option. So this means a juggling act of going through ADAP (AIDS Drug Assistance Programs), Medicaid, Medicare, Cobra, and Work Benefits. Getting the maximum coverage on your prescriptions can make the difference in eating or not that month. Also, it can mean getting fired or moving to another state can create serious health issues from having to discontinue your medicine. There’s absolutely nothing scarier than having to discontinue your life saving medication.
Big Pharma, the major pharmaceutical companies whom anti-capitalists are already highly critical of, demonstrate the most draconian sides of corporations. In an effort to capitalize on the general need for these medications for individuals to live, the game played by Big Pharma is that of commodity, monopolization and scarcity. These are manipulated and the cost of human life means nothing to the institutions of profit. The allure of accumulated capital will always rise victorious even when weighed against mass graves.
With their eyes turned to the Third World, Big Pharma blocks access to low-cost medications and the development of generic medications. Most Big Pharma companies have a stake in AIDS drugs as well. They nearly unanimously proclaimed that the lives of HIV positive people are worth as much as we are willing to pay. Solving their problems means ending the patent system and monopolization system which allows them to keep these medications scarce. It means changing the entire industry. Also, we can alleviate sub-Saharan Africa’s AIDS epidemic with humanitarian aid all we want. They will still live under the same conditions that produced them until we attack those conditions directly.
The drugs themselves come with an even longer list than usual in terms of side effects. Some drugs are psychoactive, some drugs are toxic and make it difficult to eat, some can cause your body to grow disproportionately, some attack your liver in the process, some are so powerful they make a normal life unlivable. Not to mention, these drugs are prescribed long-term. We don’t know what the effects of these drugs are to be long term, we can only speculate as they already relatively toxic. Also, you don’t just take one of these drugs, you take a combination of 3 or more.
One thing is that these drugs work very well in reducing viral load so that your immune system can recover. Sometimes, they work so well, your immune system becomes hyper active in its rebound, which can lead to other health issues. Another factor of them working so well, is that they also reduce your transmissibility significantly. Infection rates will fall as more find access to medication. Medication should be prioritized, medication and prevention need to be viewed as one in the same.
Meth as a Gay Genocide:
Lorenzo Kom’boa Ervin, one of my favorite Anarchist Black Panthers, once referred to the crack epidemic in the Black community as “a new Black genocide”. I would say that one could easily view the gay meth/HIV co-epidemic as genocidal. While meth wasn’t the only drug I used, it is a drug I used almost exclusively with other gay men. I associate it with sex. I associate it with HIV. This is a social phenomenon that straight people don’t know about. It’s an epidemic within an epidemic.
This is a lot of despair in the world in the gay meth sex circles, it’s almost a dark underground. In that culture, condoms aren’t an option, and seroconversion is glorified. There are certainly vocal liberal LGBT activists who might be brave enough to address this, but few are viewing this issue as systemic. Any fair social analysis will reveal that we’re talking about marginalizations on top of marginalizations. I’m the product of statistics, I’m gay so I’m more likely to both have a substance abuse issue and have HIV. If you are as fortunate as I have been to get off of drugs, you will find that disassociating drugs and sex is difficult. My sex life has never been the same, and that has as much to do with the drugs as it does sex.
HIV counselors and case workers will tell you that new diagnoses are often linked to crystal meth use. I can not say for sure, but I most likely seroconverted through sexual contact but likely while on drugs. I’m not quite sure what exactly was going through my head at the time. It’s a big mess of risk fetishism, porn brainwashing and drugs that I can’t quite describe. Some have called this phenomena of Gay men contracting HIV as “bug-chasing”. While some folks do this very consciously, I would say my own experience finds that to be a bit harsh. I think subconsciously the risk of HIV was a confusing internal debate, being buried by lots of drugs and sex, which become more important than your health. It’s not as simple as “I got HIV on purpose”. I do accept a good amount of responsibility, but to say I went out looking for it is a stretch. It’s not that simple.
There’s resources that need to be more accessible to Gay men caught in the grips of HIV, meth and meth-crazed sex. As with the drug epidemic in general, if addicts are going to get better, they need treatment not handcuffs. On top of that, therapy like PrEP might help to prevent new infections. It’s not like the struggle of gay men and meth is not winnable, but it means we have face this as we face our other systemic problems. Marriage equality is important to some, but the most marginalized of people in our community face a much scarier issue with meth, and one that is shaping into what may be our downfall. This has been dubbed our “second coming of AIDS”, and just like the first time, it’s time for us to escalate our tactics and win by any means necessary.
Ally politics, what helps and what reinforces Serophobia:
These are all things I have heard before upon disclosure of my status:
So upon this we arrive on issues of serophobia, ally politics, and the inevitably troublesome (albeit very necessary in my opinion) privilege and identity politics. It’s not my job to educate ANYONE on HIV. I know my status at the least, which is something many people cannot say. Everyone has a responsibility to know their status, disclose it to their sexual partners, and act accordingly. That’s it.
One of the things I encounter often from comrades and friends alike, is self-righteousness and a desire to pry into my sex-life when I disclose my HIV status. Don’t do that. I don’t care if you’re concerned. Don’t do that. While I do carry myself with a great deal of accountability and responsibility, I don’t think there is much to be gained by campaigns of which induce condom fatigue. I feel I have a very good sense of where I am accountable, and my obligations as a socially responsible individual.
Remember that safer sex is meant to be individualized. If you’re a safer sex educator, you probably know that people are aware of HIV transmission routes, and often will seroconvert anyways. We can know all about safer sex, if every option is not delivered to us (including serosorting) as safer, then we’re being told what to do. This is why unprotected sex in the gay community is fetishized. Risk becomes erotica.
Also, never “out” someone, or assume that because you’ve been told they have HIV, that others can know. This has happened to me as well. You are not doing anyone any good by making the world more aware of our “affliction”.
What HIV means to Anarchists and Communists:
We need good revolutionary leftist answers to HIV/AIDS. If our revolutionary mechanisms cannot meet the needs of those who die without modern medicine, we need examine that. Prioritizing health care is not just strategic, it should be principled. We will never end this epidemic under capitalism. Adversely, we need a strong and effective revolutionary strategy around this issue.
We need to oppose austerity at any cost. Every moment and every place where health care is not accessible, acts as a ticking time bomb of the AIDS epidemic. The HIV positive impoverished worker knows the meaning of “austerity is violence”. When we fight against austerity, we are literally fighting for our lives.
Those of us with HIV don’t need moral support as much as we need social empowerment. Accounting in your revolutionary theory the idea that some people need modern medicine to survive is something that shouldn’t have to be explained to socialists. We cannot allow anyone to left behind in our revolution, this is the call for intersectionality in our revolution.
In the capitalist world, the diseased represent a unique social caste. We can only begin to remedy the epidemic by dismantling that system. The cure for HIV might never be found, but the cure to the epidemic is revolution.
- 1 libcom note: fear of or prejudice against those who have HIV