Seven years ago I was diagnosed with HIV. At first, I didn’t think of a death sentence: thanks to antirretroviral treatments that appeared twenty years ago, HIV became a chronic disease. However, I knew that my HIV status could be a death sentence for my social and sex life. The way I would have to call upon was to become the advocate for my own cause and collect as much supporting evidence as possible to reverse my sentence and understand that it is possible to lead a normal life with HIV.
At that time, aged 21, I knew nothing about what it was like to be a person living with HIV. My only references were the stories I heard about people who died of AIDS in the early 1980s and 1990s. The most striking was the story of Brazilian singer Cazuza, who was bisexual. As I had an idea that one couldn’t die of AIDS as such an early stage of infection, I started the antiretroviral therapy shortly after discovering my HIV status.
The beginning of my treatment was very difficult: I had an allergic reaction to medications and therefore lacked adherence to the treatment. I thought about giving up several times. I would let natural selection do its job. Thanks to the support of the few people I could rely on, I managed to adhere to the treatment, still suffering strong side effects for almost a year and half after the diagnosis.
Over time, I started to understand that the most difficult part would not only be to adapt to the treatment, but to adapt to my new status in society. My sexuality had been broken. At that time, I lived inside of the closet of homosexuality and a second closet emerged: my status. I needed to opened this closet to the world with caution.
The search for information was the main key to be able to understand what it was like to live with HIV and subsequently the condition to become undetectable. I started to search for information on my own. Indeed, my entire trajectory with HIV was very lonely. It is even hard to explain how I was able to deal with complex issues such as mental and physical health or social stigma on the eve of my adulthood and with very little professional help, if not from my infectologist.
I immersed myself into the subject and understood that the reasons why I was infected was not just due to my co-responsibility for having unprotected sex, but was also a structural issue. From there, I started to understand the concept of vulnerability.
To reflect on the structures that systematize AIDS is to reflect on the disease not only as a public health issue but also as a political, environmental, social and racial issue.
In order to understand my own place within those structures, I had to immerse myself in the literature, many of then related to the HIV/AIDS pandemic, and make the necessary cutouts about my own experience within those structures, that are often transversal.
I investigated in Djamila Ribeiro’s concept of “place of speech”[1] in order to better understand my own position and how I can meddle in the debate. The contemporary Brazilian philosopher and author of the book “O que é lugar de fala (2017)”[2] seeks through other theoreticians of critical and decolonial racial theory, the theory of feminist stand point to understand what the “place of speech” is.
The “place of speech” is a place within the discourse which is not restricted to the sequencing of words and personal experiences. It is a painful and powerful place because it is primarily epistemic and reflective about the subject’s occupation within a social locus. The “place of speech” is to understand the social conditions that constitute a group and what personal experiences you share as a member of this group. It is thus to understand structures and experience them in different ways.
I am a 28-year-old white brazilian[3], upper-middle class, queer, HIV-positive soteropolitano — in other words from Salvador da Bahia, the blackest city outside the African continent — who currently lives in Portugal. Within my “place of speech”, I experience structures and I cross oppressions related to my sexuality and serological condition though, but I have significantly different experiences due to my raciality and socioeconomic backgrounds. So, in a way, I’m privileged.
This place of privilege is also a “place of speech”. In this place it, I must occupy an ethical position to understanding other knowledge and experiences of socially discriminated individuals and their own epistemologies from different perspectives and geographies that are also important for what I struggle: an equitable response to HIV / AIDS. Racializing my speech is a metaphor for power. I do not say that I am a representative of something. I am an ally for the cause and I use the privileges I was offered to enhance the voices of a world markedly constituted as an epistemicide event.
Therefore, my “place of speech” brought positive and negative experiences as a person living with HIV. On the one hand I experienced serophobia which is still present within the LGBTQIA + community (mainly the gay community) both in relationships and in dating apps that are supposed to be an oasis of postmodern and post-AIDS gay sociability.
On the other hand, I was able to have one of the greatest experiences of my life: working at GAPA Bahia, one of the first NGOs to support people living with HIV in Brazil.
The work at GAPA Bahia was so essential that I could have contact with other people living with HIV from different backgrounds. As a lawyer, I could act to transform the social reality of those people, many of them in a situation of social vulnerability. It allowed me to understand more about my privileges, as well as my position as an actor of social change.
Pipoca da prevenção – a project by Gapa Bahia and UNAIDS Brasil with a partnership with the Municipal Health Secretariat of Salvador during the World AIDS day in 2017 (UNAIDS Brasil. in: https://unaids.org.br/2017/11/acoes-da-semana-vermelha-em-salvador-buscam-envolver-sociedade-na-discussao-sobre-o-hiv/)
My struggle goes beyond this important experience at GAPA Bahia. Enriched with the knowledge I acquired through so much immersion in the literature and my short but intense experience in HIV advocacy, I took my concerns and experiences to the academy as objects of study to show the reality that is short narrated for those who experience the HIV.
My most relevant academic production, my bachelor’s thesis in law, was based on one of my biggest fears: HIV exposure following sexual intercourse as a legal issue. My thesis led me to win an award from my university as one of the best article written in my graduation year.
This background from work and my passion for the field I study allowed me to be where I am now: to reside in a country in Europe and to continue conducting academic researches about the HIV/AIDS. To deal with themes within a European academy is to go against a Eurocentric, epistemicide and white supremacist system since the European academy only sees “outsiders” as a mere object of study. They believe that we cannot tell our own story. In fact, as Patricia Hill Collins said in an interview[4]: traveling between multiple worlds and knowing that you’re not ever going to fully belong to the world that you’re in, you’ll never be a full insider. But, that outside position within can be a source of strength, a source of insight and a source of inspiration.
Being able to be in an organization like YouAct with other young Europeans and/or residents of this European zone, being a Latin-American immigrant, representing and residing a country that colonized mine, is being able to move within the structures the concerns and conflicts that it’s necessary for real social change.
I currently live with my positive and undetectable serological status over 5 years. Several immersion processes gave me a chance to know me better as queer HIV-positive activist and allowed me to recognize my privileged position within the cause.
The struggle to end the HIV/AIDS epidemic is social, anti-racist, anti-colonialist and anti-capitalist, because the access to prevention means and specific healthcare services for this population is a basic human right and cannot be understood as a commodity or a privilege by social markers.
Victor Rocha.
[1] The place of speech or locus of speech it’s a “natural” English translation of “lugar de fala”. This concept there’s not a English equivalence, because it was thank by Djamila Ribeiro and reproduced in the Brazilian’s academy debate, despite finding echoed in some English articles in the internet the term “natural” translated.
[2] Ribeiro, D. (2017) O que é lugar de fala? Belo Horizonte, Brasil: Justificando.
[3] White Brazilian refers to citizens identified and self-identified as white, being decedent of Europeans and also having a non-white ancestors, as American-Indian and Africans. The racial classification in Brazil is based primary on a personal’s physical characteristic and the social prejudice connect with this physical appearance.
[4] In: https://www.youtube.com/watch?v=ZRFZMHLQOGg
