Born with HIV & SRHR

During the LIVING Positive Leadership Summit in Durban, South Africa, I have the opportunity to participate on the morning plenary. LIVING 2016 was a two-day exchange, learning and empowerment meeting of people living with HIV. LIVING 2016 was designed to produce concrete results for action, so people living with HIV get the access, equity and rights they deserve. As such, LIVING 2016 delivered a common advocacy agenda on five top priority issues to the Community and specific processes and corresponding mechanisms for collective action on those priorities. I was nominated to give a presentation on Day 2, titled SRHR needs of young people born with HIV and GIPA: experiences of involvement in (high-profile) speaking opportunities, tokenism or meaningful engagement, during the morning plenary hosted by Rachel Ong & Lorraine Anyango. During this space, the needs of other populations were also addressed, with Cecilia Chung, Svitlana Moroz and a young women representing sex workers. Below my presentation:


Hermanas y Hermanos. Sisters and brothers. I am very excited to be here sharing this amazing space of celebration. I am L’Orangelis Thomas Negron, from Puerto Rico. I was diagnosed in 1991, and then, the doctors said I only would live 3 more years, and 25 years after that, here I am, I’m 28 years old and still counting. I’m standing here being brave and strong in my mom’s memory and of those who came first, because brave and strong is the only way to be. Brave enough to be vulnerable and open myself to confront my fears and my contradictions. And strong enough to be unapologetic, bold and call out anyone, regardless the power position, age, race, gender and HIV status, to remember what do we fight for, because sometimes we forget who the politician is and who the activist is.

We cannot change our past and stories, but we can change the way we see them, we can change our narrative, and we are the only ones who have the power to change our lives. We, young adults who grew up with HIV, many times are invited to speak about our experiences in high level panels, this is what they want to hear from me: I lost my mom when I was 11, I was sexually assaulted, I was segregated, I took up to thirteen pills a day during my adolescence, I attempted suicide and I got other curable STIs. And how I have been resilient enough to made out of that struggle, a powerful and empowering tools not only for us, but for those who may come after us and need to be empowered. But I’m tired to repeat this and many more, in those high level panels and spaces, because I’m tired of inaction. I’m tired of being used as a token to arrive home and notice that after many years, many policies, laws and harmful practices haven’t change. To know that young adults who were born with HIV, are still dying because the available ARV alternatives don’t work or us anymore because we may have tried them all. To know that that many young people and adolescents are not able to enjoy their sexual and reproductive life, because growing up with HIV they were told “You are a mortal weapon”, “your child will be positive too”.

Our rights and dignity are still getting violated not only by societies, but by governments, health care providers and others, with harmful policies and practices, instead of ensuring the exercise of our human rights, including our sexual and reproductive rights. We need to talk about sexual and reproductive justice, because talking about rights is not enough anymore.

We are not symbols, and we are not the future. We are the present. We don’t come to this spaces to make anyone look good, and we cannot continue leaving decisions impacting millions of people, our lives and bodies, in the hands of the political will of governments and people in power positions. Identify your own privilege and use it for all, recognize in which shoulders your standing. Trust the diversity, trust young people, and trust in our political character, because we won’t wait anymore, we are not asking for permission to anyone. Having said that, what are a few of the many needs of young people who were born with HIV?

  1. We demand access. Access to the variety and new ARVs that the privileged of our world have. I come from the children that almost ran out of options of treatment because we burned out all our therapies. We need to stop running out of alternatives of ARVs. We don’t need to change our therapy every time the pharmaceutics release a new one, because we don’t take medications for making the pharma industry rich, it’s about options, quality, access and rights. And you need to stop pushing us to take the medication without even asking us what’s happening, as we didn’t have any autonomy over our bodies. My age doesn’t give you any permission to run over my body. Empowering it’s about intersectionality, and recognizing that we deal with medication and sexuality, both, in our bodies it what give us the power and the right, not only to have access to information, but to make informed decision, even when they are not convenient.
  2. We must insist in sexual and reproductive health, rights and justice. We still need access to contraceptives, condoms, safe abortion and a comprehensive and positive sexual education. We still need to eradicate forced and coerced sterilization.
  3. We demand a positive sexuality. When was the last time that your health care provider asked you if you were enjoying sex? So many young people who grew up with HIV, start having sex before they even know they are living with HIV. Sometimes we are the last to know we have HIV. Our uncle knows first, our parents friends knows first, the teacher and even our neighbor know it first than us. And if by any chance we get to know it before adolescence, we could grew up hearing many negative messages about our sexuality and the risk we are for other people, that today, even when we have better evidence based information, some young people still fear of onward transmission, have difficulty in negotiating use of the male and female condom, or worry about being parents. We must promote gender sensitive, trans sensitive and LGBQI affirming sexual health literacy programmes for young people, including children in foster care.
  4. People need to stop infantilizing young people who were born with HIV, and know that we also enjoy sex, and we also want sexual pleasure. That not everyone is looking for love every time, but pleasure just for pleasure. We must break with the myth that anal sex is only for men who have sex with men, and oral sex only for women who have sex with women. And even with the culture of women just practicing oral sex to men, and not vice versa. Dear heterosexual men, we, women also enjoy oral sex, get in there. We must learn about the diversity of sexual practices and how to make them safer and pleasurable. We must start touching our bodies, to feel our bodies and recognizing how it really works.

We demand actions, we demand accountability, not only for governments and the UN system, but for donors and us, activism. If they don’t take us in account, we must create our own spaces, our own mechanism, we must be creative, because no one will do this for us, if we don’t start ourselves.

I still have many questions, since sometime it’s feels like many of the strategies are made to make us less infectious. How this agendas actually looks in a local scale? What does it mean for us in a grassroots level? How this plans may look in our bodies? And how we can implement this strategies with less funding? It’s horrible to know that frontiers actually define the quality of the treatment in one region. And it’s a shame that we have more studies in biological issues than in psyco-social matters, since mental health, stigma and discrimination are the main barriers for adherence.

We, young people who were born with HIV, need to reduce, until we eliminate, the self-stigma, low self-esteem & feeling ‘dirty’ or ‘guilty’. We must be peers, we must be mentors. And we must to eliminate the term “mother to child transmission”, since this is the only term on the transmission ways, that make reference to whom infected who, what increases the burden and discrimination for HIV positive mothers.

If we want to end Aids, we must think, what does this mean for each one of us? I don’t know what means to live without HIV, but not because I was born with it, but for the time I’ve been aware of its existence in my body. We must talk about the things that happens to us, otherwise, we allow them to happen, not only to us, but for other people.

Let us share our stories for the right reasons.

Personal is political, must of the times, that’s why we can’t be afraid to be reckless, bold and to leave the political correctness at the door sometimes.

In this last 16 years a lot has change. But this isn’t over and we cannot wait two more years for the next International Aids Conference, or five more years until the next High Level Meeting, or even fifth teen more years for the next Development Goals.

Young people who were born with HIV are still here. We are still here, we are not extinct and we are not going anywhere. There is not political freedom, without sexual freedom.

¡Seguimos en pie de lucha!



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