How the Stigma of AIDS Continues Living in the Male Gay Community
The following is a speech given at the Museum of Modern Art in Luxembourg-City introducing the movie House of Boys in light of World Aids Day 2019.
Dear Minister for Health, Mister Schneider,
Dear friend Henri Goedertz and the team from Stop AIDS Now/ACCESS,
And dear team from the Museum of Modern Art,
Thank you for the invitation to speak here. After 5 years, it is, indeed, an honour for me to be back in my country of origin to speak about an issue that, for more than a decade, has been very dear to my heart.
„The State should pass laws and/or step up enforcement of their laws against homosexual activity. As much of a moral issue as it is, homosexual activity is also now a health threat of epidemic proportions, and it simply cannot be allowed.“
–US-American Rev. Jimmy Swaggart, July 20, 1986 (1)
The quote you see behind me was made in the US. But it effectively expresses the homophobia we experienced in Europe during the AIDS crisis as well. These words may have been said before I was born, but they continue having an effect on me, the gay community, and, in fact, on all of us.
When in 2005 I came out as a gay man and started my activism and first attempts at studying human sexualities, HIV-infection had not been an automatic death sentence for almost a decade. Yet, I and so many people around me did not know this life-altering information. There I was, a 16-year-old gay man, and I did not know that getting an HIV-positive test result no longer meant that you had to die. This ignorance was and still is a direct result of the shame and stigma surrounding sexuality, especially gay sexuality. It would take me another 7 years, when I started a relationship with an HIV-positive man, for my knowledge around HIV and AIDS to really mature. He was open about his HIV infection. He talked about it with self-confidence. But the vast majority of people with HIV, even today, do not. The stigma and shame are, for many, just too much.
It is my hope, my wish for the future, that we can heal from and move beyond the shame surrounding sexuality. With “we” I don’t mean gay men. I mean us as a society. I mean everyone. Because it will not only be gay and other men having sex with men that would benefit from healing shame-induced trauma. All of us would benefit from that, regardless of our sexuality.
Before I take a deeper look into that shame and stigma, I would like to go back in time. Not back to the 80s, the peak of the AIDS crisis, but much further back to the era of colonialism in Africa at the beginning of the 20th century. Some scholars believe that HIV may have emerged as a result of harsh conditions, forced labour, and displacement associated with the brutal colonial rule of white Europeans over the indigenous peoples. The black slaves in plantations, construction projects, and other colonial enterprises were supplied with bushmeat, including from apes, which would have contributed to a higher incidence of human exposure to SIV, the ape-related precursor to HIV.
In fact, black people had been dying of AIDS-related diseases long before the 1980s, which, according to this theory, was a direct result of European colonialism. But it was only in 1981, after the first white people, mostly urban gay men, began dying, that the AIDS crisis officially started. Death was getting closer to the white, Western, middle-class, heterosexual family, and people started to panic. The panic fueled old and new forms of homophobia. The spotlight of the media suddenly turned onto gay underground culture, onto gay bathhouses, bars, clubs, and cruising areas like, for instance, Kockelscheuer here in Luxembourg. Anal and oral sex, BDSM, darkrooms, fisting, fetishes, and sex parties: Sensationalist newspaper articles and TV reports highlighted male gay sexuality in ways that allowed straight people to deepen their sex-negativity and to feel justified in their homophobia. Accusing gay men without actually understanding their sexualities became widely accepted and condoned. Heterosexually-dominated society had found their scapegoat for this new plague. Gay men were literally stigmatized for potentially destroying humanity. From that moment until today, HIV and AIDS have been inseparably linked to gay men and gay male identity.
Today, life quality and life expectancy for someone testing HIV-positive and receiving treatment in a timely manner are equal to those who are HIV-negative. By 1996, 15 years after the AIDS crisis started, an HIV-positive test was no longer a death sentence and the chronic infection became manageable and treatable – given that one has access to health care, something that many people around the world, including here in Western Europe, do not. For instance, in Germany, many of the people who now die of AIDS related diseases, are arriving refugees without access to health care, and life saving medications. We deny them their right to universal health care. When people living with HIV do have that access, they are able to live healthy, long, and normal lives. They can exercise every job, they can become parents, they celebrate, laugh and cry. They can even have sex without condoms. Because the viral suppression achieved by medications prevents sexual transmission of HIV.
And yet, a healthy and long life is only part of the truth. For many people with HIV, especially for gay and other men having sex with men, the stigma remains and can have sometimes invisible but horrific effects on their lives. I would like to share a quote with you from psychologist Alan Downs:
"For the majority of gay men who are out of the closet, shame is no longer felt. What was once a feeling has become something deeper and more sinister in our psyches – it is a deeply and rigidly held belief in our own unworthiness for love. We were taught by the experience of shame during those tender and formative years of adolescence that there was something about us that was flawed, in essence unlovable, and that we must go about the business of making ourselves lovable if we are to survive (...). If you are to be loved, you must hide the truth about yourself and work at being lovable. The days of feeling shame over being gay passed by us like the last days of summer, slipping into our memory as we moved on with life and went about the business of openly living as gay men. Shame became embedded into the trunk of our ever-expanding personalities, affecting everything about us, and yet so minutely close to the core of our being that we are helpless to see it as different than ‘me.’ As the eye cannot see itself, we cannot see or feel this embedded shame. But make no mistake, the shame is there – and it is very real." (2)
He goes on talking about the shame gay men with HIV are feeling, quote:
"For so many gay men, the shame over being HIV-positive runs a deeper and more destructive course than the shame over being gay. It becomes something of a lifelong reminder that we are flawed and enlivens the deeply held, sinister belief that perhaps HIV is physical evidence of our own unloveableness." (3)
The German gay journalist Jan Feddersen explained how deeply this shame embedded in gay men’s identities during the AIDS crisis, quote:
"Many of us were suicidal. (...) Some of us were deliberately fucking themselves to death. They wanted to die because they hated themselves. They hated themselves for being gay – as if their being did not deserve a long life." (4)
House of Boys, the movie by Jean-Claude Schlim you’re about to see, offers an understanding of the trauma of that time. It is difficult to put into words how traumatic the years between 1981 and 1996 were for gay men and – to some degree – how traumatic they continue to be for us. It was traumatic enough for those gay men that were suffering of, quote, “only” one form of oppression. For black, brown, and other gay men of colour, or for transgender gay men, to just name two examples, it was even more devastating. AIDS became a mirror of the cruel marginalization of society: The more marginalized a community was, the more affected they were by AIDS and the less access they had to medication. AZT is a medicament developed against cancer during the 60s but was, due to its very toxic side effects, never approved as a cancer medication. But, in 1985, it was the only hope people with HIV had. The medication was so toxic, and initially prescribed in such high doses, that some people died from the side effects of AZT before they could die of AIDS-related diseases. In the US, however, even that toxic medication was something that only rich people, which in most cases meant white folks, had access to. The pharmaceutical industry made a lot of money with the – back then – most expensive medication on the market: AZT costs came up to 10,000 USD per patient per year. The poorer black and brown gay and transgender communities, that in most cases had no access to health care, often relied on white gay men donating their left-over medications after they died.
The trauma of AIDS came from three different perceptions that, combined, created the stigma of being – or being afraid to be – HIV-positive.
First, trauma came from the fact that HIV infection seemed invariably fatal. The people in our community were dying in huge numbers, and we were powerless to stop this. As an aside, it is too often forgotten, that many lesbian women became important and powerful allies, fighting against conservative AIDS policies and caring for their dying gay brothers. In the German documentary “Angst vor AIDS – Deutschland in den 80ern”, HIV specialist Dr Dietmar Schranz explained that out of the blue, a hole had opened and half of your friends, half of your entire generation was gone. Love and fear became one. You couldn’t love without being afraid. As House of Boys painfully shows, young men were suddenly faced with the very real question of how they wanted to die. Some started to collect drugs and medications to take their own lives before AIDS would become visible in their faces and make everyone turn away from them. Gay men were burying more friends and lovers before the age of 30 than most people do in a lifetime. Psychologist Alan Downs sums this up as follows, quote:
“‘Where is John?’ is a question even I knew never to ask. If someone suddenly disappeared from the scene, you just assumed he had succumbed to the plague.” (5)
The people dying were often more than “just” friends. They were gay men’s chosen families, often after their blood-related families had abandoned them for being gay. Nonetheless, it was often these blood-related families who buried their outcast sons, excluding their sons’ friends and chosen families from the mourning ceremonies. Shame and stigma worked here to deny cause of death, with family obituaries saying they died of cancer, or, quote, “after a long illness”. Commonly these obituaries ignored sexuality and the lives these men had made, rendering them invisible, and silencing their pain and their triumphs after they had died, while robbing their sons’ chosen families of the last chance to say good-bye and make peace.
Second, trauma came from the outspoken homophobia that reached a peak during the AIDS crisis. In the dominant, straight world, AIDS was God’s punishment for being gay. This belief rarely hid some people’s disappointment that they could not themselves execute that punishment of physically exterminating all those sexual deviants that dared to leave the path of monogamous straight marriage. In 1983, the year in which the German magazine Der Spiegel launched the first of many sensationalist and homophobic AIDS cover stories, AIDS activists successfully blocked the door to an operating room in a hospital in Berlin where doctors wanted to operate on a dying man’s brain – not to help the man, but out of scientific curiosity.
Dangerous Sex Monsters
And third, trauma came from the stigma of being an alleged danger to society. HIV empowered fears that homosexuality would lead to the downfall of society. As explained by the German blogger Der Zaunfink, apocalyptical fantasies came up, in which gay men literally became the embodiment of deadly viruses that would, together with the demonic help of bisexual men, bring down entire nations. Yet, Western Germany had quite progressive AIDS policies when federal health minister Rita Süssmuth took charge: She sought the cooperation with the newly founded AIDS service organizations, focussed on working together with those affected by HIV and AIDS instead of against them, and promoted condom use, something that brought her a lot of criticism, as many people believed it best to not have any sex at all outside of monogamous heterosexual marriage. In Bavaria, regardless of these progressive policies, the government decided to police and monitor not only people living with HIV, but also those considered at risk and their relatives. Sex workers, drug addicts, gay men, and foreign residents were forcibly tested and 40 years after the liberation of the Nazi camps, Horst Seehofer, Germany’s current minister for home affairs, called for the creation of homes to, quote, “concentrate” people living with HIV in order to “protect” society.
Outside of Bavaria, much was done to allegedly protect society from these portrayed deadly gay sex monsters: In West Berlin, employees at a public swimming pool protested when people with HIV wanted to use the pool. Some in Germany demanded that HIV-positive people be forcibly tattooed next to their genitals. In Luxembourg, conservative politicians condemned HIV prevention through condom use instead of, quote, “moral values” and monogamy, or demanded that people be forcibly tested when getting their driving license. And all over Europe, including in Luxembourg, dentists were refusing to treat people with HIV, prison guards were demanding to be relocated in order to avoid coming in contact with HIV-positive prisoners, and employees were demanding that their colleagues with HIV be fired. Ironically, some real dangers were ignored: Until 1987, in West Germany, nobody felt responsible to test banked blood. Many found it easier to scapegoat entire groups, including sex workers, immigrants, drug users, and most notably gay and other men having sex with men, rather than to take real action benefitting public health.
Many gay men internalized that stigma so that social hate turned into self-hate, often accompanied by the conviction that they did not deserve to live, let alone have a happy, fulfilled life. To some extent, this self-hate continues living in our minds up until today and shapes our world, our thoughts, our actions, our behaviour, our self-esteem. Of course not in every gay man. But, to varying degrees, in too many of us. In the early 90s, partly as a result of the AIDS crisis, male gay culture became obsessed with trained, muscular bodies. Representing health by way of fit, athletic bodies became a means to distance yourself from the sick bodies of people living with AIDS. This insecurity of male gay culture is something the fitness industry continues to capitalize on.
The viral death sentence may be gone, but the stigma, this mix of shame, guilt, and fear, often with memories of so many deaths, lingers in the collective memory of gay and other men who have sex with men. Mental health is a significant problem within the gay community. And while there are diverse reasons for that, the collective trauma from the AIDS crisis and the HIV-related stigma that every gay man faces in society today, regardless of his HIV status, are certainly contributing factors. Gay, bisexual, and queer men are 4 to 7 times more likely to commit suicide than heterosexual men. By the time gay men become adults, 20% of them have already tried to commit suicide.
The stigma gay men face in a heteronormative society post-AIDS crisis also leads to a division within the gay community. The ghost of the promiscuous, slutty gay man, created during the AIDS crisis, still divides the community. On the one side, you have the, quote, “good” gays, those that live in monogamous marriages and assimilate to heteronormativity. On the other side, you have the, quote, “bad” gays, those that dare to live promiscuously, have multiple sex partners, and go to sex clubs. While marriage equality certainly is a success to be celebrated and defended, it is also a result of a wish to be on the “good” side and to assimilate into heteronormativity. “Straight-acting” or “out of the scene” are labels some gay men give themselves and demand of others. The dynamic of good vs bad gays is today, more than two decades after the introduction of effective HIV medications, again visible in the discussions around PrEP, a medication taken by HIV-negative people in order to prevent HIV infection. PrEP successfully protects against HIV, even when not using a condom. However, PrEP users have been stigmatized as irresponsible, dangerous sluts, and the medication itself irrationally described as a party drug. And the same sex-negative reasoning maintained against condom users in the 80s is now, ironically, used against PrEP users. The band keeps playing on, the stigma of the AIDS crisis remains, just in new forms.
Again: Mental health issues within and divisions of the male gay community have diverse reasons. But they are also examples of how the trauma of the AIDS crisis – the stigma resulting from death, homophobia, and the perception as dangerous sex monsters – continues to affect gay men. Every social interaction we have, every word we exchange might potentially and often subconsciously be accompanied by the fear of being perceived as bad, as sick, as dangerous. HIV/AIDS denial and conspiracy theories are, as a result, a convenient method to alleviate that stigma. If HIV or AIDS don’t exist, if it’s all just a big conspiracy by the pharmaceutical industry, then you don’t need to feel ashamed, guilty, or bad anymore. You can effectively project that shame onto an evil conspiracy. Interestingly, there are many, maybe even mostly, straight people believing in conspiracy theories surrounding HIV/AIDS, suggesting that not only gay men are affected by HIV stigma, or the stigma of being a sexual deviant, but also heterosexuals. This isn’t surprising, as hardly anyone’s sexuality neatly falls into expected norms, and any deviation of the norms can be a reason for shame and guilt. Conspiracy theories might be a way of the human psyche to alleviate that guilt.
So the way we manage HIV and AIDS has to be a collective effort. However, all too often, it is left to individual responsibility, a burden unfairly imposed onto people fighting with stigma that makes consistent responsibility difficult if not impossible. In many countries, for instance in Germany, people living with HIV are criminalized. In some cases, they are imprisoned for having sex with other people without disclosing their status, regardless of whether there was actually a transmission of HIV and regardless of whether they practiced safer sex, either via using a condom, or via being treated and having an undetectable viral load, thus making a transmission of HIV impossible.
The necessity of collective action and state responsibility should not diminish the effects of personal behaviour. Despite all the false accusations of being irresponsible, it is, indeed, important to highlight and, yes, admire the tremendous change in behaviour that the gay community accomplished during the AIDS crisis. Contrary to expectations, the curve of new infections among gay men in many countries did not continue rising but flattened towards the second half of the 1980s. German sexologist Martin Dannecker showed that among gay men during the 80s, condom use increased by an impressive 93%! (6) The gay community managed to incorporate the use of condoms into their sex practices to an extent unparalleled among heterosexual people. These facts stand in direct contrast to the demeaning stereotype of the so-called “irresponsible homosexual”. And even though we now have PrEP and Treatment as Prevention, effectively preventing HIV transmission even without use of condoms, studies show that gay men continue to use condoms more persistently than heterosexual people.
Coming full circle, when giving such a speech, it is always difficult to honour both past and present. To remember times gone, while making sure to not remain stuck in the trauma of the past. Fact is, gay men in Western Europe today have better lives than ever before. Also, when they have access to health care, people living with HIV are neither sick nor dying. They can have the most regular lives. And by far not all people with HIV suffer from mental health issues or internalized stigma and shame. But the risk is higher for them than for those who are not living with the virus.
Yet it remains important not to forget the past. Especially today, with the rise of right-wing nationalism, fascism, and post-factual politics, it is a matter of respect and dignity for those we have lost to AIDS, to stand up against intolerance and marginalization. All around the world, and also here in Luxembourg, right-wing populists and post-factual politics are gaining momentum. This will always be detrimental to the most marginalized of society, not only LGBTIQ folks but also, for instance, people of colour, refugees, migrants, Muslims, and Jewish people. A rise of right-wing populism is guaranteed to have negative effects on HIV/AIDS prevention and politics, too.
Honouring the past as a means to gain lessons for the future is something that Jean-Claude Schlim’s House of Boys can help teach us. I saw House of Boys for the first time when it was released in 2010. It was for me one of the most important and certainly the most professional Luxembourgish movie I had seen.
House of Boys makes visible what many people want to hide, to silence, to deny. It restores dignity to those gay men who died of AIDS-related diseases and were buried by their families, denying their homosexuality, denying AIDS.
My deep gratitude goes to Jean-Claude Schlim for his internationally critically acclaimed movie. House of Boys takes us on a journey to make us feel the pain of these lives, and in so doing, it effectively bridges the stigmatizing gap between us and them, between heteronormative society and the gay community. With compassion, integrity and empathy, House of Boys reconnects us. This reconnection is important to heal from the trauma of AIDS, not only for gay men, but for society as a whole. As patriarchy not only harms women, but also men, by creating traditional or toxic masculinity, and as homophobia does not only harm homosexuals, but also straight people insecure about their sexuality, so too does serophobia, the belief system oppressing people with HIV, harm people without HIV. It is no longer a virus terrorizing our sex lives. It is stigma. It is serophobia.
Living in Berlin has taught me a lot about human sexuality. Berlin is famous for its sex clubs, where all kinds of people, whether straight, gay, lesbian, bi-, or pansexual, whether intersexual, trans-, or cisgender, and no matter your race, origin, religion, age, class or ability, come together, transcending societal norms, barriers, and divides, to celebrate life, and yes, have sex. It is a place where you can witness the transformative power of connecting via sex. Sex can be a means of separating people but it can also be a means of connecting. And the ironic thing is that you don’t have to have sex in order to experience that connection. In times of rampant neoliberal individualism, it is sometimes easy to forget that humans are meant to connect. It is my hope, my conviction that House of Boys has that very same connective power to bridge the gap between straight and gay, between HIV-negative and HIV-positive, between past and present, and between us and them.
Thank you Jean-Claude Schlim. And thank you, the audience, for listening.
(1) Hoppe, Trevor (2018): Punishing Disease – HIV and the Criminalization of Sickness, Oakland, California, p. 1.
(2) Downs, Alan (2012): The Velvet Rage – Overcoming the Pain of Growing Up Gay in a Straight Man's World, Cambridge, Massachusetts, p. xif.
(3) Downs, Alan (2012): The Velvet Rage – Overcoming the Pain of Growing Up Gay in a Straight Man's World, Cambridge, Massachusetts, p. xvif.
(4) Translated from: Reichert, Martin (2018): Die Kapsel – Aids in der Bundesrepublik, Berlin, S. 58.
(5) Downs, Alan (2012): The Velvet Rage – Overcoming the Pain of Growing Up Gay in a Straight Man's World, Cambridge, Massachusetts, p. 222.
(6) Cf. Reichert, Martin (2018): Die Kapsel – Aids in der Bundesrepublik, Berlin, S. .