Leo Schenk & Andrea Bandelli
“With hindsight, I realise there was a lot of fear back then. All of the information was really targeted to make you fearful. Now we see how wrong that was, it has had such long-term effects on people – even into today.” Andrea Bandelli [above, right], originally from Italy, is Executive Director of Science Gallery International and a HIV activist, based in Dublin, having spent time in Amsterdam. His husband, Leo Schenk [above, left], from the Netherlands, is the editor-in-chief and co-founder of Hello Gorgeous, co-founder of Poz & Proud, and a writer, presenter and HIV activist, based in Amsterdam, but who visits Dublin regularly. Here, they speak with masc about their respective arrivals to Amsterdam, their diagnoses, stigma and standing up for oneself and one’s status.
Leo, you arrived in Amsterdam first, where you became a HIV prevention worker. Tell me about the atmosphere there at that time.
Leo: My real years as a prevention worker were in the 90s. I moved to Amsterdam and was thrown into big gay life there; I worked with gays, I went out with gays – I went from zero to one hundred. Those were really years of creativity on the gay scene. It was very big, growing, and it was as if people needed relief from thinking of AIDS and HIV all the time. A lot of people went out clubbing just to relieve the tension, to ‘dance on the volcano’. Knowing there’s something serious going on but dancing the night away, dancing away the pain of the epidemic striking Amsterdam.
Andrea, you arrived a little bit later.
Andrea: When I moved to Amsterdam, from Trieste, it was an opportunity to fully realise myself. The openness, the honesty and directness that people have there is fantastic. I remember coming to Amsterdam and not being very well informed about what to do and what not to do [around sex]. There was fear, and there was also very little information. There was a ‘don’t do this, don’t do that’ attitude – but you really didn’t know why. Now, although the situation is completely different, a kind of fearful approach remains. Fear simply doesn’t work when you are in situations that are very emotional, engaging and irrational – for all kinds of reasons.
When and how did you meet?
Andrea: I like to say that we met during a ‘research project’.
Leo: We had an [outreach] project in the porn cinemas. We worked in the bars and clubs and dark rooms, but we never did anything in the cinemas. There was a very special crowd there, mostly bisexual men or men who actually don’t identify as gay. We got some money and decided to do a ‘participation evaluation programme’. We gathered a bunch of volunteers and they would go to several cinemas to see what was going on; but also to participate, to find more about how people were informed about safe sex. I put out an advert for volunteers and Andrea responded.
Andrea: It was very interesting [smirks]. We had to visit these theatres and accurately describe what went on there, in terms of sex in order to prepare a campaign that was effective for the kind of people and activities in those venues. We got free tickets to watch porn and ‘engage’ with the men there. And we would have to write reports. Very detailed reports [laughs]. [After that] it was clear there was this really wonderful attraction. I was just out of a relationship so for a year or so, we were in this fluid state where I was Leo’s toy boy for a little while. And then it was clear that we could actually start a relationship together. Soon after, we decided to get married.
Leo, talk to me about your diagnosis.
Leo: In 1997, I found out I was HIV positive. Actually, I already had the AIDS diagnosis. I was in the last phase of the infection. At that time it was not possible to be tested in the Netherlands. They said, ’we don’t have any medication, so why would you want to be tested? Just do it safely and at least you can avoid being stigmatised and having false hope in the medicine at that time’. So, I was the one of the gay guys who didn’t get tested and that resulted in me having AIDS.
A year before I was hospitalised, I already knew there was something wrong. I got tingles in the palm of my left hand and they slowly moved upwards. I got tired a lot. I lost weight. In the back of my mind, and then more and more to the front of my mind, I knew this was wrong. I knew this was AIDS. There was a year of shame; of putting it to the back of your mind, of not dealing with it, of seeing where it would go. Literally, I almost had to drop dead to help myself and to be helped. I woke up in hospital the day after Princess Di crashed in Paris. I had crashed as well – thankfully, I survived.
How traumatising was that? Or was it?
Leo: It was traumatising but it really gave me a lot of motivation. I got AIDS and became woke. Before that time, I was a prevention worker. When I became HIV positive, I saw how all the information, all the poster campaigns and projects we led, didn’t speak to me as a positive man or many other positive men. They spoke to negative men. Looking at it from the other side really motivated me to become a better activist.
One day, not long after, I was in a sauna in Amsterdam and [someone] said, ‘it’s so stupid to get HIV now’. I’m sitting with my towel around my waist and I looked around. There were all these other men who knew they were also HIV positive and it was like a slap in our faces: ‘it’s your fault’; ‘you should have done better’; ‘there’s been years of education – why are you becoming HIV positive now?’ I went home to my then partner and I had to cry for a long time, almost hysterically. Not from sadness, but from a real epiphany that this is what I’m supposed to do: to educate people and take care of stigma. Stigma can be so awful for people who don’t have HIV at all. I was almost glad I had that experience in the sauna because it caused me to become more active
As a couple, is there something particularly unifying in sharing a positive status?
Andrea: Well, we were a serodiscordant couple for many years. Even when U=U wasn’t openly known, we knew it was the case. We knew that there was no risk of getting HIV even when not using condoms. On the one hand, that was very reassuring. On the other hand, we couldn’t understand why that information wasn’t being pushed out more widely. Of course, the reason why I got HIV after many years is because I had sex with somebody who was not undetectable.
I learned a lot in those early years from Leo; from all his activism, from the support group he set up with other gay men in Amsterdam. I learned a lot by talking with HIV positive people about all aspects of living with HIV. When my diagnosis came, it was like a cold shower: not something I was wishing for, but it was no drama – it was no big deal. I knew what it meant and I was well prepared for all the emotional reactions. It wasn’t easy but it definitely wasn’t too complicated to go through. It meant I could do more activities and activism with Leo. In that sense, it created an extra, unexpected bond – definitely.
Leo: When I met Andrea, before his diagnosis, my HIV doctor told me there was no risk [of infecting Andrea] at all, that my viral load was undetectable, but to keep my mouth shut and not tell anyone. Sex was conditioned by fear. We first started having sex with a condom, and then without a condom. But in my head there was such an obstacle in taking the next step. Scientifically, I knew there was no problem. Psychologically, there was a big obstacle.
You told me that when Andrea became positive, it was like you became positive for a second time. Explain that to me.
Leo: I was so proud of us. I think we both were. Of being a serodiscordant young couple on the gay scene in Amsterdam. We organised evenings around serodiscordant couples and were ambassadors for U=U. When he become positive, it was almost like a failure, but that sense of failure came from my self stigma. Self stigma is even more devastating than stigma. You can deal with stigma, but self stigma is not something you can easily get rid of. It lurks in the background and that was really the second time it came on strong.
Is self stigma something you work through once or is it an ongoing process?
Leo: It’s an ongoing thing. Being stigmatised is partly a choice. There is you and the person who stigmatises you. Where you are able to cut that cord between you, there is no way the person who stigmatises you can affect you any longer. People ask me if there is still stigma around. There is. I hear from a lot of people who had a bad experience with their medical care services personnel; with family, friends. But if you ask me if I encounter any stigma myself, I say I encounter no stigma at all. I can see something that is stigmatising, but it doesn’t hurt me like it did way back when when I first got diagnosed. That comes from a place of self worth, self love and self acceptance. If you’re not accepting your life with HIV, then anybody can hurt you by saying wrong things, by saying bad things.
Andrea: I don’t think I really experienced self stigma. I was lucky to have met so many positive guys. I was well primed. I’m really grateful for that. I immediately came out to everybody, I didn’t keep it as a secret. Sometimes there was the ‘coming out moment’ where it can be a bit scary. But by being very open, I realised that everybody really reacted in a wonderful way. I never experienced any negative reactions. Maybe I’m lucky to know only wonderful, open people. Every positive reaction that you receive helps you to fight the self stigma because it is an acknowledgement of how much worth you have and how good you are. I also think that we very much overstate the issue of negative reactions.
In which expecting a negative reaction might actually be self stigma at play?
Leo: We anticipate stigma. People might say they’re not telling their family. They’re not doing it because they’re only anticipating a negative reaction, not because one has actually happened.
Andrea: Also, if you don’t come out, you avoid the uplifting experience of people reacting in a positive way! It’s really wonderful when people compliment you and say it doesn’t matter why you got HIV. We all have different experiences in our lives, but these are all experiences that can make us stronger and better people. And just by talking and discussing and disclosing you realise how those experiences can make you a better person.
Give me your takes on the current situation in Ireland with regard to HIV:
Leo: Let’s start with the positive. There’s a lot of willingness and a lot power in the gay scene to change things here; to change attitudes towards sexuality and towards queer people; to change the status around PrEP, as seen through groups like ACT UP Dublin. But there are only a handful of people who are open about their HIV status and I find that very, very disturbing. As well as activism around prevention, you have to work on empowering your positive community. Otherwise, although you might have PrEP here next year, there’s still going to be a lot of shame around people living with HIV. You cannot only work on PrEP. It’s good, it’s important, but you have to have support groups; a campaign saying it’s okay living HIV now. It’s not a deadly disease anymore – the stigma is the disease. To normalise HIV, by which I mean having no shame, no guilt; where you can go about your business and tell a person you have HIV without being put on the spot to declare what sex you have, or what ‘wrongful’ things you did, you need an empowered HIV community that stands up and shows people that living with HIV is possible now.
Andrea: With the rollout of PrEP next year, it’s really important to change the narrative. You shouldn’t take PrEP to avoid a terrible disease. If that’s the story, then people will not take PrEP and people will not get tested. PrEP is not there to avoid something ‘horrible’ – it’s a healthy choice for your health. I’m also surprised there aren’t many people who are open about their HIV status in Ireland. Is it really so difficult? Living with HIV shouldn’t be associated with guilt, shame or negativity. Fear is never a good decision making system. Empower people with good role models and build strength. That’s the building block for a story in which living with HIV is fine. Of course, it shouldn’t be disregarded. [HIV] adds many other things to your life. It’s not only a matter of a pill every day, or making it seem too easy – it enriches your life and it’s good and it’s worth it for people to be open about it.
Leo: Nobody is going to change this situation for you. You can’t just whine about it. The time is up to be scared and frightened in the corner and not be open about your status. You need more people to show the world that there is life after a diagnosis. Be visible. Start with your family, friends and colleagues. For every negative reaction you receive, you’ll get a positive one back. Many guys fear rejection and I had to switch my head around as well, but after the tenth negative reaction I thought, ‘well fuck you, I’m a great guy – if not for you, then for ten hundred other people. I’m not going to be affected by your negativity’.