Desde el año pasado estaba queriendo hacer algún tipo de proyecto sobre el VIH, los ciclos y el arte, aunque no estaba segura sobre el cómo lo desarrollaría pues no me considero artista. Sin embargo,… Más
Being undetectable is something that many people living with HIV aspire to, but for me it is not a goal.
This is a structured goal of United Nations, agencies, national strategies and clinical staff. The new slogan “UNDETECTABLE = INTRANSMISSIBLE” dominates my Facebook, and I find it very interesting because it seems that all that serves to be undetectable is to avoid transmitting the virus. We do not talk about opportunistic infections, CD4, inflammation and other things in which maintaining a low viral load, also supports.
I am NOT undetectable right now, and of all the moments of my life in which I felt “infectious”, no one wins this one. Some of the speeches about undetectability often do not contemplate what it means for other people to be undetectable. Somehow, it sounds as easy as lowering the volume of music, and I even feel excluded for not being that “a la mode” as some people living with HIV make it looks. Very often is used as some kind of stigma shock absorber, and without even noticing we create more layers of stigma.
The fear of transmitting the virus, I believe that at some point, if not constantly, almost most of all had experienced, and for that reason I fully understand the value of being “UNDETECTABLE = INTRANSMISSIBLE “. If you can do it, great and from the bottom of my heart, I congratulate you. However, there are other things that have priority for me, including that each person, irrespective of his or her HIV status, has the tools to live a pleasurable and healthy sex life. In other words, that the protection of a person, does not depend entirely on me, because that causes me even more stress, than the probability of transmitting the virus.
Personally, I feel that using our undetectability primarily as a risk reduction tool within national plans and global goals, even if prevention programs do not contemplate it (tremendous contradiction, by the way), is another way of giving us greater responsibility in our beds. Above all, when the main purpose of undetectability should be OUR QUALITY OF LIFE, and I find insulting that even when taking my medications, I have to do it thinking about other people too? Girl!
I have changed schema several times, at least three (3) times. This is not to mention the changes I had before the age of nine (9) with protocols and AZT per vein that I received until seven (7). To be exact; AZT by vein, staduvine, nelfinavir, emtricitabine, ritonavir, atazanavir and nevirapine. Up to the present raltegravir, abacavir and lamivudine liquid, tablet and combination.
When you have been living with HIV for at least fifteen (15) years, you may have changed therapy several times, perhaps in less time. I am not sure how many schemes I will have available, but I know that at this point I do not have many left. Especially with combinations in a single pill, because sometimes you are not resistant to all medicines that have a single pill have, but there are discarded alternatives that might be viable, and that, I think, is the downside.
Being aware that I do not have so many alternatives of therapy, changing the schema and burning them, for not achieving being undetectable, is not a good business for me. If I can keep my CD4 at a good level, and I can use other things that complement, my priority, and this is very personal, is to have good CD4 count, not to be undetectable. Usually a low viral load, goes hand in hand with high CD4, but not always.
I plan to live, at least until my fifty (50) years, and I know I will live more, but that is my minimum, so I think of the schemes available for at least, my next 20 years of life. That there will be more options later? Yes, but I cannot count on that now. That a cure may come out later? I hope so, but it is not something I can count on while I burn my available possibilities.
El pasado martes 15 de noviembre tuve la oportunidad de participar de un panel sobre la Prevención de VIH en jóvenes. Parte de mí escrito a continuación:
…Me considero defensora de los derechos sexuales y reproductivos. Por eso siempre me gusta recordarle a la gente que quienes vivimos con VIH, tenemos el derecho de llevar una vida sexual positiva y placentera, como cualquier otra persona. Que tenemos el derecho a reproducirnos, a tener orgasmos y al sexo casual consentido, sin sentirnos culpables. Cada quien es dueño y dueña de su propio cuerpo, y tiene la libertad de hacer con él lo que le plazca de manera informada y saludable. Así mismo como el deber, la responsabilidad y la dignidad, de tomar el control y empoderarse sobre su sexualidad, su salud sexual y reproductiva.
Te infectas tú, no te infecta él, ella, la otra o aquel. Te infecta la doble moral, la falta de conocimiento y educación, la exclusión y el prejuicio. Nos infectamos porque el sexo sigue siendo asociado con algo llamado “pecado”, porque sigue siendo un tabú. Nos infectamos porque usamos más nuestros teléfonos para estar en Facebook pendiente a lo que publico la de al lado, que para buscar información. Nos infectamos porque es más fácil ir a comprar cervezas que ir a comprar condones. Porque es más fácil sentirse ofendido, que tomar acción. Es más fácil irse a la playa el día libre, que ir a realizarse una prueba de VIH y otras ITS. Nos infectamos porque nuestros cuerpos siguen siendo sometidos por el fundamentalismo, y fundamentalistas siguen teniendo cabida en nuestras políticas públicas.
Nos infectamos porque las mujeres seguimos dejando nuestra propia salud para lo último. Por creer que la que hace con su cuerpo lo que le venga en gana, con quien y cuando le venga en gana, es la “inmoral” y es la que se va a infectar. Porque nos enseñaron que el amor es ciego, y que al marido no se le pide la prueba de VIH, porque el amor confía ciegamente. Nos infectamos porque creer que la juventud está perdida, algarete, que no puede tomar sus propias decisiones y que no tienen el derecho a la autonomía. Nos infectamos porque algunas drogas son ilegales y por criminalizar a quien las consume. Nos infectamos porque a veces una trabajadora sexual no comprende que con quien tiene mayor posibilidad de infectarse es con su pareja estable con la cual no usa condón que con el cliente con quien si lo usa. Porque ellas también son criminalizadas y no tienen acceso a una buena salud sexual. Nos infectamos porque las mujeres trans son invisibilizadas aun dentro de la comunidad LGBTQI y no logramos atender ni comprender sus necesidades específicas. Porque son excluidas institucionalmente. Nos infectamos porque las personas migrantes muchas veces tienen miedo de ir a recibir servicios de salud. Porque también se lo niegan. Nos infectamos porque los hombres que tienen sexo con otros hombres, siguen siendo vistos como aberrantes, “pecadores”, contra natura y torcidos. Porque aún no comprendemos la diversidad sexual y placer del sexo anal.
Nos infectamos porque creemos que somos la excepción y que “a mí no me va a pasar”. Nos infectamos porque vivimos en una sociedad capitalista que explota, hipersexualiza y desvaloriza nuestros cuerpos. Donde está bien ver carteles gigantes que hablan del aumento de senos en las carreteras, ver sexo en la televisión, y que en una de las avenidas principales del área metro hayan más moteles que escuelas. Donde el sexo es un chiste, mientras que la educación sexual de calidad, basada en evidencia y con perspectiva de género es vista como parte de una “agenda oculta”.
Porque la homofobia, el racismo, la xenofobia, el patriarcado, la heteronormatividad y lo binario, crea las condiciones para que nos infectemos. Nos infectamos porque no somos vistos y vistas como seres completos, holísticos y sexuales, y que los determinantes de la salud no inciden en nuestra sexualidad. Te infectas por tus prejuicios y tu sistema de creencias. Nos infectamos porque no somos capaces de identificar nuestros privilegios, nuestras vulnerabilidades y nuestras precariedades. Por qué no sabemos salir del ciclo de violencia, porque no tenemos las herramientas, porque no sabemos ni como ejercer nuestros derechos. Nos infectamos por pensar que esto es problema de unos pocos.
Nos infectamos porque no importa cuanta educación sexual y prevención tengamos, a mí, que vivo con VIH, me continúan echando mayor responsabilidad al momento de tener relaciones sexuales. Porque es más fácil señalarme a mí y responsabilizarme a mí, que asumir el control de tu salud y de tu sexualidad.
In 2012 I learned, thanks to YouTube, to make homemade soaps and candles. At first I saw it as a hobby, something that brought me peace, and that somehow increased my self-esteem, because my hands were literally creating something useful, cute and exactly how I wanted. I experienced colors, smells, designs, sizes and shapes, and slowly, I was creating a personal “style”. This “style” was what led me to ask myself “would I buy this?” and my answer was “of course!” And the reality is that I like homemade stuff done at from creative and super cool people, and I also thought “I can be one of those creative and super cool people to buy homemade stuff from” and from there, I’ve been using these hands to continue creating, as long as I can.
Over time I learned to do other things, like body lotions and jewelry with African fabrics. All this is what supported me occasionally to complete my month, with little gifts or trifles made by me to spare some bucks, and it’s gives me the tranquility knowing I’m supporting in some way to the local economy because all my materials are bought in local stores in my town, some are fair trade and / or items made here, in Puerto Rico.
On many occasions, I used the sale of soaps and candles to raise some money before leaving journey to an event related to HIV work I do. Yes, WORK, because investing between three (3) to about eight (8) hours per day, between reading and writing emails, reporting, consultation processes, reply to messages on Facebook and WhatsApp from all over the world, workshops painting, creating campaigns, assist to in person and virtual meetings, pins, making presentations for use by another country, support when someone is depress or don’t have someone to talk, going to give a talk in a community, translate documents, mobilization young people, managing media, buy gift speculums to my friends, make connections between youth, trainings, identifying treatment sites in other countries and many other things, it is work. So I find it difficult to answer when people ask me if I was able to find a job yet, because I have a job, but is not always remunerated. And often there are always people for whom none of this is enough, because as an activist, people expect things from you as if you were perfect and did not have a life with other things to do.
We know that for local, national and / or international funding, an all legal process and specific conditions are required, as having at least 501, among others. For this and more, plus that international cooperation has slowly been leaving from Latin America (until at some point there will be almost nothing), is that many of the networks of, by and for young people living with HIV, don’t receive a penny for the work we do, a work that at the end of the day, is for the benefit of us and our peers. For this reason, from the very first moment that I was chosen to participate in the VI Meeting of the Argentina Positive Youth Network (RAJAP in spanish) in Buenos Aires, Argentina, I started looking for funding and I was almost certain, that the main way to get enough money to pay my flight ticket, was with serious self-management. But no the “sending letters to give me money” self-management, I needed to go out to sell stuff. Thanks to the soaps, I could pay the internet I use to do the required work, and I must say very honestly that until days ago three (3) thought it would not be possible to raise enough money to pay my fare, since is never the same $ 60.00 on internet than $ 1200.00 to fly to Buenos Aires. With the support of a late paycheck, I am pleased to report that THANKS TO MANY SUPER CUTE AND SOLIDARITY PEOPLE, I’VE COMPLETED THE MONEY NEEDED AND BOUGHT MY TICKET!
This experience has been extraordinary, full of learning and above all reminds me that passion and will are motors that move a world of possibilities that only those who have the courage, bravery and are released, can see. I feel very grateful and too excited, because for me, this is proof that there are many people who believe and supports the work done, and that despite the current economic situation, there are those who bet on the local and community work, activist and feminist, and especially when one is made based on the other.
I missed a lot of sleep, there were many nights making orders, lots of spills and disasters at home, donations of materials, extreme headache by mixing scents, body aches, allergies, sinusitis and stress. Many times I wanted to run my house, in others, I walked 45 minutes to spare the $ 3.00 on public transportation. Lots of energy, dedication, messages and little details that make things more beautiful.
Necessity is the mother of invention, and I need to thank Syndi, Abi, Katya, Ruthy, Ivette Rodriguez, Ivette Gonzalez, Cynthia, Maria Fidalgo, MaryMer, Wanda, Britzeida, Denisse, Mayra, Angel, William, Sarahi, Iveliz Michel, Kriss, Norma, my health care providers, the group from the Council and many others who I might missed here.
This is possible thanks to you, this has been one of the opportunities in which I felt more support and appreciation. I send you a hug, and continue seeking new models for creative financing.
En el 2012 aprendí, gracias a YouTube, a hacer jabones de glicerina y velas. En un principio lo vi como un hobbie, algo que me traía tranquilidad, y que de alguna manera aumentaba mi autoestima, pues mis manos estaban literalmente creando y transformando algo útil, lindo y a mi gusto. Experimente colores, olores, diseños, tamaños y formas, y poco a poco, fui creando un “estilo” personal. Este “estilo” fue lo que me llevo a preguntarme “¿yo compraría esto?”, y mi respuesta fue “¡CLARO QUE SI!”. Y la realidad es que me gustan las cosas hechas en casa por personas creativas y súper chulas, y pensé “yo puedo ser una de esas personas creativas y chulas a quienes les compran cosas hechas en casa”, y desde ahí, he utilizado estas manos para continuar creando siempre que pueda.
Con el tiempo fui aprendiendo a realizar otras cosas, como cremas y accesorios con telas africanas. Todo esto es lo que me apoyaba de vez en cuando a cuadrar la quincena, con los regalitos o detallitos hechos por mí para ahorrarme par de pesos, y además me brindaba y brinda la tranquilidad de saber que estoy apoyando de alguna manera a la economía local, pues todos mis materiales los compro en tiendas de Rio Piedras, de comercio justo y/o artículos hechos en Puerto Rico.
En muchas ocasiones, utilicé la venta de jabones y velas para recaudar algún dinero antes de salir de viaje hacia algún evento relacionado con el trabajo en VIH que realizo. Si, TRABAJO, porque invertir entre tres (3) a unas ocho (8) horas diarias, entre lectura y redacción de emails, redacción de informes, procesos de consultas, contestar mensajes en Facebook y en WhatsApp de todas partes del mundo, talleres de pintura, crear campañas, estar en reuniones presenciales y virtuales, pines, hacer presentaciones para que las usen en otro país, apoyo cuando alguien esta depre o no tiene con quien hablar, ir a dar una charla en una comunidad, traducir documentos, movilización de jóvenes, comprar para regalar espéculos a mis amigas, hacer conexiones entre jóvenes, adiestramientos, identificar lugares de tratamiento en otros países y muchas otras cosas, ES TRABAJO. Por eso se me hace complicado contestar cuando me preguntan si conseguí trabajo ya, y es que tengo trabajo, pero no es remunerado. Y en muchas ocasiones siempre hay gente para la cual nada de esto será suficiente, pues como activista, la gente siempre espera cosas de ti como si una fuese perfecta y no tuviese una vida con otras cosas que hacer.
Sabemos que para recibir financiamiento local, nacional y/o internacional se requiere todo un proceso legal y condiciones específicas como tener al menos una 501, entre otras. Por esto y más, además de que la cooperación internacional poco a poco ha ido saliendo de Latinoamérica (hasta que en algún momento no habrá casi nada), es que muchas de las redes de, por y para jóvenes viviendo con VIH, no recibimos ni un centavo por el trabajo realizado, que al final del día, es para beneficio de nosotros y nosotras, y nuestros pares. Por tal razón, desde el primer momento en el que fui escogida para participar del VI Encuentro de la RAJAP en Buenos Aires, Argentina, me puse a buscar financiamiento, y estaba casi segura, que la manera principal para conseguir el dinero suficiente para pagar mi pasaje, seria con la autogestión. Pero no una autogestión, mandando cartas para que me den dinero, autogestión tipo salir a la calle a vender.
Gracias a los jabones es que he podido pagar el internet que utilizo para hacer el trabajo requerido, y tengo que decir muy honestamente que hasta hace tres (3) días pensé que no sería posible recaudar el dinero suficiente para poder costear mi pasaje, ya que jamás es lo mismo $60.00 a $1200.00. Con el aporte de una quincena atrasada, me complace informar que GRACIAS A MUCHAS PERSONAS SÚPER LINDAS Y SOLIDARIAS YA COMPLETE EL DINERO QUE NECESITABA PARA COMPRAR MI PASAJE.
Esta experiencia ha sido extraordinaria, llena de aprendizaje y sobretodo me recuerda que la pasión y la voluntad son motores que mueven todo un mundo de posibilidades que solo las que tienen el coraje, la valentía y son lanzadas, pueden ver. Me siento muy agradecida y demasiado emocionada, porque para mí, esto es prueba de que hay mucha gente que cree y apoya el trabajo que se hace, y que a pesar de la situación económica actual, hay quienes apuestan a lo local y al trabajo comunitario, activista y feminista, y sobre todo cuando una se hace en función de la otra.
Fueron muchas noches amanecida haciendo órdenes, muchos regueros y desastres en mi casa, donaciones de materiales, dolores de cabeza agudos por la mezcla de olores, dolor en el cuerpo, alergias, sinusitis y estrés. En muchas ocasiones quise salir corriendo de mi casa, en otras camine hasta 45 minutos para ahorrarme los $3.00 del tren. Mucha energía, dedicación, mensajes y cositas que hacen que las cosas queden más lindas.
La necesidad es la madre de la invención, y yo necesito agradecerle a Syndi, Abi, Katya, Ruthy, Ivette Rodriguez, Ivette Gonzalez, Cynthia, Maria Fidalgo, MaryMer, Wanda, Britzeida, Denisse, Mayra, Angel, William, Sarahi, Iveliz, Michel, Kriss, Norma, a mis proveedores de salud, el corillo del Consejo y muchas otras personas que me faltaron. Esto es posible gracias a ustedes, esta ha sido una de las oportunidades en la cuales mas he sentido el apoyo y agradecimiento.
Les mando un abrazo, y seguimos con la autogestión y buscando nuevos modelos de financiamiento creativo.
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:
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.
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.
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…
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.
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:
WATCH THE VIDEO: https://goo.gl/z7Fg40
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?
- 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.
- 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.
- 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.
- 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!
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:
- 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.
- 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.
- 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.
REUNION DE JOVENES LAC
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:
- 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.
- 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.
- 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.
- Trabajo de las Redes Nacionales: Argentina, Costa Rica y Brasil.
- 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.
REUNION JOVENES LAC & ONUSIDA:
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.
COOPERACIÓN SUR – SUR
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:
- Aprender y compartir lo que está haciendo cada red.
- El fortalecimiento Regional y Nacional de las Redes de Jóvenes que viven con VIH en África, América Latina y el Caribe.
- Desarrollo de Capacidades de las redes y grupos de jóvenes viviendo con VIH.
- La programación conjunta y la movilización de recursos.
- Desarrollar agendas conjuntas de promoción a nivel nacional, regional y nivel internacional, especialmente en torno a los jóvenes de las poblaciones claves.
- Abogacía Nacional y Regional sobre Financiamiento Interno.
- Los Datos desagregados específicos de juventud.
- Construir redes capacitadas para influir en la revisión de políticas y su desarrollo, en sus países y comunidades.
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…
“SISTER, RECOGNIZE YOUR BODY, OWN YOUR STORY, EMBRACE YOUR POWER”
Del 29 de noviembre al 4 de diciembre 2015 tuve la oportunidad de participar de la conferencia ICASA o La Conferencia Internacional de Sida e ITS en África, y fue celebrada en Harare, Zimbabue. En esta conferencia pude realizar un corto taller en el cual las mujeres jóvenes pintaban sus úteros mientras que expresaban lo que sentían acerca de ellos. Aquí las pinturas. Un abrazo y gracias a todas las jovenes que participaron.
From November 29 to December 4 2015 I had the opportunity to participate in ICASA or the International Conference on Aids and STI’s in Africa, which was held in Harare, Zimbabwe. Here, I realized a short workshop in which young women painted their uteruses while expressing how they felt about them. Here the paintings. I appreciate to all those women and young women who participate.