Getting a Seat at the Table

The Monday 18th of July I had the opportunity to be in a panel named: Getting a seat at the table, young leaders share the highs and lows of leadership and accountability. This panel was a collaboration between Link Up, Athena Network and the participants where; Raoul Franzen, Mimi Melles, Jacqueline Alesi, Myo Thet Oo, Linda Mafu and myself. The propose of this session was to brings together a group of young people who are involved in such spaces, at the country or global level, including the Country Coordinating Mechanism (CCM) of the Global Fund, the UNAIDS Programme Board Committee (PCB), and the UNAIDS Dialogue Platform for Women Living with HIV. The session explored some of the strategies employed by young people to make the most effective use of their engagement; their successes in representing different constituencies of young people; how they remain accountable to the communities they represent; and, any challenges they have encountered, and how we have overcome these.

I was asked about what barriers to young people in their diversity face to getting access to decision making spaces:

1. Language.

We use language to create realities, we can build and destroy paradigms by using different words or even creating more options that we weren’t able to describe because we don’t have the correct words to do so, or just to make a distinction. So, when we talk about language we must know that many terms are new for different people, and young people who may just start doing activism or understanding the HIV (and HIV related themes) world. This way, when we use technical language, maybe from the academia, science or UN system, we can get a bit lost, and of course of participation will be affected.

Idiom as well, is a huge gap. My first idiom and language is Spanish, and many people still believe that is English. And it’s because my English has been improving since 2012, and also because I know that if I want to have a greater impact, I would need to speak a more common idiom and language. When we go to spaces like International Aids Conference, big part of the event is in English, when it’s supposed to be “International”. Translation can be a fundamental key for many people that don’t have the resources to learn an additional idiom, and can improve their participation. However, having translation not necessarily may solve all the issue, since we know that the translation is not 100% accurate, for example in Spanish I can say “hombres que tienen sexo con otros hombres”, which means “men who have sex with other men”, but maybe the translation may say “men who sleep with other men”. It may sound something not important, but when we are talking about declarations that will get the compromise from the governments, between “sex” and “sleep”, there’s a difference.

2. Economic.

This theme can have a couple of layers. We can start by thinking about the number of young people that participate in processes like the High Level Meeting, just for using an example. In this kind of processes you will have many people living with HIV and many allies that don’t live with HIV but somehow, their work is connected with HIV. So, it’s good to ask ourselves, when we talk about participation; participation of who, where and how? We have awesome youth advocates, but how this advocates are representative enough? It’s very common that young advocates who don’t live with HIV, are in this processes because they work (with a salary) in the NGO they
represent. On other hand, is also very common that young people with HIV representing NGO and Networks, are there because they got their participation funded, but in fact, their work is volunteer with no salary at all.

So, when your activism and/or political work is funded is easier to participate, because activism is your work and job, so the time you invest is not your limited and free time, instead, the quality time. Sometimes we go to a meeting or event that may be a week long, and those days are our “vacation” days, that we took from our jobs. But if you’re out of “vacation days” from your job, that week you won’t get paid, and not being pay for a week, can mean not having enough money for paying something as basic like your rent, and the rent is something that we may not want to stop paying.

Definitely working on the HIV response with a salary can allow you to organize better your time and resources. Also, you don’t need to choose between HIV work and your job that pays your basic needs. You can even have a job in a NGO that works something related with HIV or specifically with HIV, but your position doesn’t allow you to take a week of to the High Level Meeting, for example, again. Another example can be the internet access. With better access to internet you can follow better the conversations on real time, help you to build a stronger movement outside your country, gives you more access to information and to respond to the actual communications platforms where you may find a lot of young people you can engage with. If you work in a national, local or in the very grassroots is easier with no internet access, but if you want to engage in a different level, you might need to invest in a good internet access, otherwise, is complicated to follow up. When I say invest, I mean money. You can even go to a Cyber Café, but you will need to at least buy the coffee. This still a huge barrier, I think not specifically of young people but, a lot of activism.

3. Time.

Is much related with economic issues, but in this case is related to the engagement and expertise young people may have. The longer you are engage with the HIV response, more information and experience you MAY have. Even though young people are kind of experts with social media and accessing online information, there are some skills you get with the actual participation which gives you experience. Isn’t just only about having the info, it’s about knowing how, where and when to use it, and sometimes this skills comes with experience. A young person who had the opportunity to be in many spaces, will have more skills on how to use an info, that a young person with less opportunity to be in those spaces, even with the same info.

Experience isn’t necessarily related to age, but with opportunities and the time you spend in activism and participating. But again, if you don’t receive any remuneration, who much time can you expend to have more experience that improve your participation, and by the time you get experienced enough, you might have more than 30 years. The issue here is that, when you are confident enough about your experience and skills, and you have more than 30, the agendas and spaces don’t applies you anymore. This is why we need to engage a whole lot more with adolescents.

About time, is very important to keep in mind that the agendas must me dynamic and scrollable to follow a generation in their different development areas. For example, the UNAIDS 90-90-90 cannot look the same for young people, adolescents and adult people all the way until 2030, because now I’m 28 years old, but in 2030 I will be 42 years old. So, in 2030 I will be a different adult, than today’s adults, and if the agenda don’t respond to my generation, but only to my age, how effective can be?

During the International Aids Conference I had heard a lot about “young women need to raise their voices” and “young women must have a seat at the table”, but once I have my seat at the table, WHAT HAPPEN? Once our voices are up, WHAT WE HAVE TO SAY?

We are more than voices and seats…


WomenNow! 2016

Women Now! 2016 is the Pan African Women’s Summit on the framework of the International AIDS Conference 2016, which after sixteen years is back to Durban, South Africa. The primary goal of Women NOW! Was to bring together a broad diversity of leaders and emerging leaders who are concerned and working on women’s sexual health and development to influence the agenda at the International AIDS Conference (AIDS2016), and to impact institutional and community responses to HIV among Black Women around the world. An opportunity to assess the content and execution of the IAC for its meaningful inclusion of women’s and girls’ sexual & reproductive health and justice, especially women and girls of African descent, who bear the brunt of the HIV pandemic among women worldwide, was addressed during this three days of work and sisterhood. This summit addressed critical areas of concern for women’s human rights, through an intersectional lens, including key issues of race, economic status, gender equality, women’s empowerment, gender-based trauma and violence, and sexual and reproductive health, rights and justice.

A very good number of Sub-Saharan countries were represented, including leaders from USA, and strong young women from the Caribbean. This was one of the few spaces that I have ever been, where intersectionality between race, gender and HIV was addressed as the main issue, what allowed me to have a different perspective on HIV, and even though for many people this could be an excluding space because of race and/or gender, this was and still a pending conversation.

There’s no denying that a big number, more than the 50% to be super conservative, of women living with HIV are black. Either you’re African, African- American, Afro-Caribbean, or any other identity in the Pan-African or African descendant spectrum and context, many of us, all around the world, look kind of the same. We know that the Sub-Saharan African countries have the highest number of infections, followed by the Caribbean. If we look at the USA statistic, black women represent more than the 65% of the total number of new HIV diagnosis among heterosexual women. This is why we need to be able to study more the race issue as a health determinant. We live our blackness in different ways according to our context, but this space allowed me to see how those differences came together as one, to deliver a response that understand all our complexity and diversity.

During this Pre Conference, we were able to meet Dr. Olive Shisana, AIDS 2016 Local Co-Chair, Princess Mukelile of Zulu the Nation, Musa Njoko an HIV positive musician and a big group of women leaders living with HIV. This event was well balanced between academic and performative sessions, with a good intergenerational conversations. We have the opportunity to learn how disconnected the agendas can be from the grassroots and how to implement powerful but simple initiatives that can change the life of young women, adolescents, girls and boys sexual education. I may say, this has been one of the best places during my journey at Durban, to feel the sisterhood, embrace our diversity and connect all together to move forward as one. We always have something new to learn from one to another.

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!

Informe Reuniones para J+LAC


Esta reunión mantuvo una agenda abierta y conto con la participación de Cesar Núñez de ONUSIDA. En esta participo la mayoría de las personas de Latinoamérica y el Caribe Hispano. En esta se discutieron tres asuntos principales:

  1. Participación LAC en eventos globales: se le dejo saber al representante de LATAM en la IAS (International Aids Society, organización que organiza la conferencia) el descontento por la baja participación de LATAM en las pasadas dos conferencias y la baja otorgación de becas para que más personas de la región pudieran participar.
  2. Proceso de la Reunión de Alto Nivel: se compartió la experiencia de quienes participaron durante los pasados cuatro meses del proceso, las ganancias y las pérdidas. Se habló sobre la falta de transparencia del proceso, la mala comunicación que existe entre las Misiones que se encuentran en NYC y las delegaciones de los países, la falta de conocimiento de muchas de las delegaciones en temas de VIH y los determinantes de la salud, y por último, la articulación de la sociedad civil ya que el mismo proceso de alguna manera genero una división entre el apoyo a las Poblaciones Claves y las ganancias para las mujeres.
  3. Cooperación con Venezuela: se dialogó sobre la situación en Venezuela y la falta de suministros, reactivos y otros artículos. Se mencionó la importancia de las comunicaciones ya que son muy pocos los artículos que reflejan la realidad de la situación de Venezuela, ya que unos exageran y otros ocultan cosas. La mayor problemática es que el mismo gobierno no reconoce la problemática, lo que evita que se dé la cooperación desde ONUSIDA y otras agencias. Se inició un equipo de colaboración Latina, aun esperamos comunicación.


El propósito de esta reunión fue conocer a los y las jóvenes latinxs que estábamos en la conferencia, independientemente de su lugar de residencia, estatus serológico e involucramiento en redes nacionales. Los temas discutidos fueron:

  1. Acceso a los Servicios de Salud: se dialogó sobre la calidad de los servicios en los diferentes países para jóvenes y personas con VIH, así mismo como su prevención y el uso del PreP.
  2. Financiamiento de Servicios: discutimos cuanto del financiamiento para la respuesta del VIH en nuestros países es cooperación internacional, aportación interna y como se verán afectados los programas de VIH con el retiro del Fondo Mundial.
  3. Latinoamericanxs en USA: pudimos hablar acerca de las condiciones de vida en las que viven las personas latinas con VIH en los Estados Unidos y como estrechar lazos podría crear una colaboración entre la Sociedad Civil en Latinoamérica y la Sociedad Civil Latina en USA.
  4. Trabajo de las Redes Nacionales: Argentina, Costa Rica y Brasil.
  5. Agenda para Reunión con Luiz Loures: Esta agenda fue construida por los y las jóvenes que estuvimos en esta reunión y NO fue exclusiva de J+LAC.


En esta reunión participó Luiz Loures (Director Ejecutivo Adjunto), Rubén Pagés (Encargado de Juventud) & Cesar Núñez (Director para LATAM).


  • Avances de J+LAC desde Melbourne.
  • Buenas Practicas sobre las colaboraciones entre J+LAC, las redes nacionales y Comunicaciones.
  • Líneas de Comunicación para fortalecer en trabajo nacional
  • Articulación de estrategias que nos permitan la creación y el desarrollo de las redes de jóvenes.
  • Capacitación y/o Apoyo Técnico sobre la implementación de la Agendas y la Eficiente rendición de cuentas.
  • Apoyo para la creación de una plataforma virtual que nos permita llegar a más jóvenes y atraer recursos para las redes nacionales.
  • Colaboración Sur – Sur.

Compromisos de ONUSIDA:

  • Se continua la colaboración de ONUSIDA con J+LAC.
  • Crear los enlaces posibles con las redes a nivel nacional.
  • Apoyo para crear una aplicación móvil que permita difundir información sobre los países, sus redes y atraer recursos de otros sectores.

Comentarios adicionales de ONUSIDA:

  • Los encuentros no están teniendo el impacto esperado.
  • Tener un máximo de tres metas concretas.
  • Renovación de liderazgos.
  • Enlazar la creación de las redes con metas específicas.
  • Documentar el proceso de J+LAC desde su inicio.
  • Tomar en consideración que las muertes están disminuyendo y la incidencia subiendo, y ver como eso impacta el trabajo que hacemos.
  • Evaluar el trabajo para con el Caribe.


Tuvimos varias reuniones de Latinoamérica y AY+ (Red Regional Africana de Jóvenes Positivos- Red de Redes). En una de ellas tuvimos la oportunidad de presentar la iniciativa a Luiz Loures y Rubén Pagés. Esta iniciativa es muy nueva, hay muchas personas interesadas en que esta colaboración se concrete, y hay mucho que hacer aquí. Los puntos finales alrededor de los cuales estaremos trabajando y desarrollando un plan serán:

  1. Aprender y compartir lo que está haciendo cada red.
  2. El fortalecimiento Regional y Nacional de las Redes de Jóvenes que viven con VIH en África, América Latina y el Caribe.
  3. Desarrollo de Capacidades de las redes y grupos de jóvenes viviendo con VIH.
  4. La programación conjunta y la movilización de recursos.
  5. Desarrollar agendas conjuntas de promoción a nivel nacional, regional y nivel internacional, especialmente en torno a los jóvenes de las poblaciones claves.
  6. Abogacía Nacional y Regional sobre Financiamiento Interno.
  7. Los Datos desagregados específicos de juventud.
  8. Construir redes capacitadas para influir en la revisión de políticas y su desarrollo, en sus países y comunidades.

PURPLE BOX: The Body, The HIV & The Empowerment

There was a Purple Box in my closet. This box isn’t just purple, it has purple and white flowers printer. Inside I have at least one hundred pictures, and many films with more than ten years without being revealed. I can remember the moment when my mom bought this box, we had so many pictures albums and we needed to save space, so the box was a very good idea. After my mom dies, I save this box as a treasure, but not because the pictures, but because of the meaning that had to my mom, that wasn’t the same that I had at that moment. Now, I can share the meaning that the box have to my mom, and I place it in a visible space, where, whoever come to my apartment, can see it, because my walls are full of paintings and have no pictures in it.

I can’t recognize many of the faces on the pictures, because they were people that somehow disappear of my mom’s life before I can have memory of them. But they are in that box anyway. Many of those pictures are also on my dad’s side. Pictures that he borrowed but never returned, and I save them in my purple box. I have black and white pictures, also sepia.

It’s very interesting to know that those pictures where taken in a specific moment of the time, and that for people who are not involved, it’s mean nothing. But for those who are, it’s mean the world. It’s remembering a dead moment of our life and bringing it out of the dust of the corners of our memories, and suddenly we have the proof of the time in our hands. We are able to remember how we felt, how we looked, the stuff we used to believe in, the smells around us, and how much we have change. This is why, when Dazon asked me to do a Story Telling session at Women Now! I decided to make something else, as always.

So, I make a reflection on the key moments of my life and realized that, thanks to my purple box, I was able to see exactly how I look in every one of them. The mind blowing thing for me, is that I was able to track my HIV story, maybe more than 5 years before I was born. How? Well I found a picture of the man with whom my mom got infected, and I understood that she got infected during her adolescence, after the ending of the Vietnam War and an important economic crisis in Puerto Rico. One of the few things I know about that man is that he was a military. So there’s when my HIV story started.

The story about my body can be totally different, because is about empowering and taking possession of it. But most of all, how I have started a process of recognizing my body, it changes and embrace my own skin, my material and organic self and those changes. The interesting thing is that, whenever you see me in pictures, you can also see the virus manifesting itself or not, and the social situations that something biological, put my body and soul through.

Part of my family is religious, and having piercings and tattoos, is something that is not that well seen, even thought, we all know that we can do with our bodies whatever we want to do. So, when it comes to the feminist slogan “My Body, My Rights” or “My Body, My Territory”, I realized that very often we lie to ourselves about it, in a very practical way. Power over our bodies is not just a slogan, it should give you the confidence to actually do WHATEVER YOU WANT WITH YOUR BODY. From cutting your hair, getting a piercing or tattoo to deciding to have sex and children or not, and even taking the medication.

So, more than a year ago, I did something very simple, but practical; I shaved the right side of my hair. Even though it was “in” at the time, for me it was empowering. I felt like for the first time I was actually deciding over my body, and how I eliminate something however I wanted, whenever I wanted. The next thing was getting a piercing in my nose, my first piercing ever. It hurt, but I looked how I wanted to look and not how I was supposed to look. Some of my friends said that I was becoming rebel, but for me it was materializing my beliefs and owning my own speech about my body. You don´t need to do something like this to prove your own self to you, but everyone has their own processes and ways. So, when I turned 27 I make a “photo shooting” of the parts of my body I didn’t like, and how a body with a 27 years virus can look. The hardest part, was publishing it because I was being vulnerable and sharing the insecurities of visible things in me.

After this, even my speeches has changed, I’m speaking of stuff that I never thought I would speak, bolder stuff. I even was pictured naked for a feminist calendar, and even thought I know that somehow I’m safe, showing that picture in WomenNow! in a room full of unknown people explaining the processes that I’m having with my body, was a huge deal. It was a huge deal, because, when we talk about the sexuality we forgot something very basic, our bodies. When we talk about young people who were born with HIV, we still get infantilized, even when were are not children anymore. People talk about young women and sexuality but they don´t want to see where that sexuality take place, the body. People talk about self-esteem as something abstract, but it doesn´t always need to be something abstract, it can be as material and physical as looking yourself in the mirror, naked, and being able to touch your body, recognizing it and remind you that it has change, and it always will.

The Purple Box allowed me to track how much my body, my virus and my life has changed. It allowed me to stop to think about my narrative, separate the different aspects and moments of my life to fill the blanks and spin a greater quilt of my story. Giving those multiples perspectives and layers to yourself is not an easy thing, even more if we look at our bodies as material and organic tools of resistance and history, and how this material and organic tools are territories. Territories that have been able to endure the virus, not only in a biological way, but in a social context. Also recognizing that the changes in our bodies are the proof of resilience, battles, history and that we had made it this far.

That Purple Box allowed me to do that and more; to revive some painful moments that I didn’t understand then, but now, with more understanding, information and context I’m able to heal, and remembering those moments as something that build a ramifications of paths for me to choose, so today, I can sit  here and tell you and whoever is reading this…