Positive renewal

By Antoine Bal | December 2020

An oversized red ribbon and almost forty years of HIV history watch over this encounter. At 28, Gleisson is younger than the epidemic. White platform sneakers, jogging trousers with press buttons, a gold earring. The smile under his little millennial moustache is infectious. Gleisson describes himself as non-binary, but doesn't mind the "he". It always depends on the context, he says. In this large room at Groupe SIDA Genève, peer groups usually exchange glances and experiences. Gleisson has been a volunteer here for two years. From here, he fights to change things so that others don't have to go through what he did: coming out about his HIV status, prejudice, silence and stigmatisation. Gleisson has set himself the goal of deconstructing the negative perceptions of his life - of any life - with HIV. And the name of his Instagram blog, which he has been running since the first lockdown, says it all: "Good HIV vibes only!"

Young, migrant, HIV+

When Gleisson was born in 1992 in Luziânia, very close to Brasília, as the third of five children, Act Up had been working for five years to stem the massacre and advance the global fight against HIV. Triple therapies do not yet exist. Twenty years later, after completing a KV training programme in Brasília, he works for FUNAI, the national foundation for the protection of the indigenous population. "I was already working in a minority context and had been sensitised by my contact with various indigenous peoples in Brazil." Gleisson learnt from this experience that administration alone is not enough. Out of curiosity, he took a year out to learn French in Paris and Geneva, where his sister had been living for around fifteen years. A romantic encounter prompted him to settle in Geneva at the end of 2013. Gleisson and his partner, from whom he is now separated, start a life together. He works in cafés and restaurants, while at the same time enrolling at a French-language baccalaureate school for adults.

"It was 2015, the 17th of September. I remember every detail. I remember the doctor telling me I was HIV-positive. I can still hear her voice, but I don't see her in front of me anymore." Gleisson had been feeling strangely weak for some time, so he decided to get tested. Result: low body defences, high viral load. Despite the shock, he feels supported, including by his partner, who turns out to be HIV-negative on the same day. The medical team also reassures him about the effectiveness of the treatment and the scientific progress. Gleisson is followed by the infectiology department, and in a few months he is undetectable.

It was 2015, the 17th of September. I remember every detail. I remember the doctor telling me I was HIV-positive. I can still hear her voice, but I no longer see her in front of me.

A new life begins, but the fears that have settled in his head are immediate, social: "I didn't ask myself how I had become infected. But I asked myself: What will happen to my life now? How will I get on with my family and the people around me? How will I be able to talk openly about it, knowing that I've only just found my feet here and hardly know anyone?"

Trauma and discrimination

"Unfortunately, all the images that I've carried around with me since my childhood came to mind. Formative images of AIDS." These traumatic images belong less to him and more to a history of socially shared and internalised ideas. They have occupied our sexualities for decades. "I remember, as if it were yesterday, snippets of words, rumours about this boy from the neighbourhood where I grew up: the 'Aids man'. An extremely stigmatising and insulting term. Without even knowing his status, people talked about him, about his body, about his weight loss and wondered whether he would die or not." For Gleisson, these memories are part of a process of self-stigmatisation. "At that moment, I decided not to talk about it. I didn't talk about it with my family or friends for three years."

To illustrate the extent to which he felt trapped inside, Gleisson recounts the Christmas that followed his HIV diagnosis. After his visit to Brazil, he returned to Geneva with his parents, where they were to live with him for a while. Gleisson feels cornered. He can barely stand being near his parents in his student digs. Under the pretext of going shopping, he packs his things, takes the next train and then the next flight to Thailand, where his partner is spending his holidays. He leaves his parents behind in Geneva and makes up excuses. "I didn't manage to tell them, nor did I manage to hide it from them. I needed time to get my bearings, to internalise it all, to deconstruct it."

The silence, the inability to speak, is reinforced by first-hand experiences of discrimination. It leaks out that he is HIV-positive. The news makes the rounds and comes back to him when he is still unable to speak freely about his status. The brutality of being outed fuels his already acute emotional distress. Gleisson is outraged that he is being denied the reality of his life in this way. What is even worse is that those around him are trying to trivialise his outing. "How can you do something like that to someone? It was a violation of my person, I felt attacked and I filed a complaint." Difficulties also arose in the school environment due to his state of health.

In private chats I am radically open, I always say that I am living with HIV but that I am undetectable. I call a spade a spade.

Liberating knowledge

He first immersed himself in HIV anonymously on social networks. He then discovered Groupe SIDA Genève on the advice of his doctor, about whom he says with emotion: "This is a valuable aspect of my life with HIV, this relationship between doctor and patient." He feels he is in good hands at Groupe SIDA and begins to get involved. "Groupe SIDA is a love story. I've found a second family here. I'm a voluntary migrant, I live far away and I'm happy to have people who are so close to me." When Gleisson comes out, first to his sister and then finally to his parents, he is better able to reassure them - but is also surprised at how much his mother already knows about it. This family knowledge not only allows Gleisson to come out unreservedly and fully, but also to accept support. "I realised that I was entitled to this support. In a broader sense, it also gave me the resources I needed to deal with discriminatory situations instead of withdrawing - without overreacting or losing my cool."

Resilience in activism

Today, Gleisson shares his experiences in numerous exchange workshops in the community of people affected by HIV, but also in the school environment. His young but intergenerational CV, his non-binary nature, his situation as a migrant - with all these overlaps, he is helping to create new images and new ideas. "In our collaborative project 'Regards Croisés', I realise that direct contact with people living with HIV is absolutely essential. Young people not only need school knowledge, but also identification. When they go out here, they create a new image for themselves."

Deconstruction also includes language, the choice of words. "When it comes to discrimination against people living with HIV on dating apps, for example: I am radically open in private chats, I always say that I am living with HIV but that I am undetectable. I call a spade a spade. But it's also about using different expressions, for example 'Have you been tested?' instead of 'Are you clean? In Gleisson's view, the expertise of people living with HIV needs to be mobilised in order to avoid the old stigmatising reflexes regarding HIV transmission that he has perceived since the outbreak of the coronavirus crisis.

What are his dreams? To pursue the essence of his life's journey so far, says Gleisson, and turn the worst into a social force. "The benefits are twofold: for me and for others." And living proudly on a beach in the autumn of the pandemic.