Category Archives: I am: Women Living with HIV

There is a chill in the air. School is back in session. Protests that shut down transit in Buenos Aires have returned. All the hallmarks of fall are upon us. It is also the season for me to buckle down and get the ‘I am…’ women with HIV project advancing. It was quite slow over the summer months and my contact making abilities were stymied by vacations. I’ve had difficulties in some regions, but received a wonderful surprise this morning when I received a reply from Uruguay. Yeah Uruguay! I look forward to expanding both my knowledge of HIV/SIDA discrimination/life/struggles in another country and moving forward with the project. I will continue to photograph in Argentina as women agree to participate, but the focus for this year will be to expand into Uruguay and Chile.

The project didn’t sit idle for the whole summer. Although I didn’t move it as far forward as I would have liked, I am immeasurably pleased to have several young women participate. You also can see the new photos on the ‘I am…’ project page, along with the full description (if you’re new to this project).

UPDATE: Scroll down to the photos and below each is a newly posted English translation of each woman’s words. Thanks to professional translator Valeria Otero for cranking out the translations for me.

[The following is both the best explanation I could write about this project and mostly part of a grant application, so I decided to use it here as well. At the end of the explanation is a photograph with the words of each woman. Because Argentina is in vacation mode in January the project is slow at this time. I am working on taking it regional and global and looking for opportunities toward the end of the year to show. I also have several other women interested in participating. However, if you know of a woman who is HIV-positive -- for any reason -- and would like to be a part of this I am more than eager to talk to her, no matter where in the world she is located. Please pass on my information. Thanks for looking and as always, thanks for any feedback.]

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Yo Soy, Je suis, Ek is, Tôi and in any number of other languages, all have the same meaning, I am.

My project explores the search for both a personal and global identity of women living with HIV/AIDS. The project is titled ‘I am…’ and is a series of environmental portraits, coupled with words written by each participant finishing the phrase, ‘I am…” Through the involvement of the subject in the documentary process, I hope to create a deeper understanding of who these women are; not just an external photographic representation, but joined to an internal self-identity.

According to the 2010 UNAIDS Global Report over half the world’s population infected with HIV/AIDS are women or girls and in Sub-Saharan Africa young women between 15-24 are eight times more likely to be HIV positive (p. 10 UNAIDS/10.11E | JC1958E). Although 76% of all HIV positive women live in Sub-Saharan Africa (p. 130) it is not just a problem for Africa, Latin America, or the United States. It is a virus that affects the globe.

This project was born in Argentina when I started talking to organizations working with HIV-positive women in Buenos Aires. I was surprised by the women who revealed that their families were unaware they lived with the virus. Children, parents, neighbors and friends of these women remained untold. The virus is being hidden for fear of discrimination and retribution, if not against the women themselves then against their children. One young HIV activist told me she begins her group talks by stating she is not a drug addict or a sex worker and only afterwards she explains that HIV is a virus that effects anyone, anywhere.

The project has five purposes:

1. To continue press coverage of HIV/AIDS in a time when young women born with the disease are growing into adults and learning to manage their identity with HIV.

2. To promote cultural understanding and connection on a global scale. The written words of each woman are integral to the project. They create connection between the viewer and the subject. ‘I am…’ many things and commonalities bring others closer so it is harder to fear, disregard or discriminate.

3. Evoke a personal connection through photographs taken inside homes or personal spaces.

4. Lessen the fear of discrimination for all HIV-positive individuals by seeing the women in the project prominently displayed and unafraid to be identified with the virus. At the same time, create through their words a more inclusive identity outside being HIV positive.

5. Lastly, give women across the globe strength to be included in the public voice on HIV prevention and treatment.

I believe we cannot combat the spread of HIV/AIDS if we do not talk about it. The dialog has changed however. We are no longer talking about dying of AIDS. Today we talk about living with HIV, and living with a ‘socially unacceptable’ disease often means living in silence. Ignorance is not bliss and women with HIV are also mothers, wives, daughters, sisters, professionals, and activists.

On the December 10, 2010 UNAIDS Today blog post for Human Rights Day, Executive Director, Michel Sidibé, is quoted as saying, “zero discrimination is a prerequisite to preventing new HIV infections and ensuring people who are infected have access to treatment and support services. This strategy will help to ensure that the response to HIV is not only effective in protecting health but also in protecting the dignity and security of people affected by HIV.”

Again, according to the 2010 Global Report, respondents to a survey by the UNAIDS Programme Coordination Board, “reported internalized stigma: feeling ashamed, guilty, suicidal, and blameworthy,” (p. 124).

The Global Report also comes to the conclusion, that HIV discrimination is still highly prevalent globally and there is a need for both more “meaningful involvement” of persons living with HIV as well as “meaningful coverage,” (p137).

In essence the aim of this project is to do both. Photographically.

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Yo Soy mujer, madre, abuela, esposa, activista, pero soy tan simple como esto que tu puedes ver. Yo soy eso que tu vez. Yo soy tal cual tu me vez.
–Catalina (Katy) Castillo, 42, HIV+ 8 years as of December 2010

English:
I am a woman, mother, grandmother, wife and activist, but I am as simple as what you can see. I am what you see. I am the way you see me.
–Catalina (Katy) Castillo, 42, HIV+ 8 years as of December 2010

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Soy Mariana Iacono, de Buenos Aires Argentina. Trabajadora social, estudiante de Historia. Amo nadar en el mar si no hay meduzas, me gusta leer y hacer deportes. Trabajo en el ambito de educacion en dos escuelas secundarias con adolescentes y tambien soy activista en VIH/sida en RAMVHIS la Red Argentina de Mujeres que Viven con VIH/SIDA, tambien estoy en la fundacion BS AS sida representandola en un foro del INADI. Tengo una mama y un papa que son encantadores por demas encantadores. Una perra que es mi hija. Y un amor que me llena el corazon. Vivir con VIH a esta altura de mi diagnostico asi 9 años, tengo 28, ya no tiene nada de problema, todos los dias lucho contra el estigma y discriminacion a las personas que vivimos con vih.
–Mariana Iacono, 28 HIV+ 9 years as of December 2010

English:
I am Mariana Iacono, from Buenos Aires, Argentina. I’m a social worker and student of history. I love swimming in the sea if there are no jellyfish. I love reading and practicing sports. I work in education in two high-schools and I’m also a HIV/AIDS activist in RAMVHIS (Network of Women Living With AIDS). I’m a member of Fundación Bs As SIDA and I represent them in a INADI forum. I have a mother and a father who are lovely, really lovely, a female dog who is my daughter, and a love who fills my heart. Living with HIV, at this stage of my diagnosis —9 years ago, I’m 28— is not a problem anymore. Every day I fight against the stigma and discrimination against people living with HIV.
–Mariana Iacono, 28 HIV+ 9 years as of December 2010

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Soy de una ciudad hermosa como Mar del Plata, con las mejores amaneceres en el mar y hermosas noches bajo las estrellas, la vida me llevo por el camino del activismo y así me convertí en una mujer activista, feminista y defensora de los derechos humanos, creo en el respeto mutuo, no le tengo miedo a la vida, viajo por cualquier lugar luminoso, con sombras y a veces muy oscuros para estar con amigos/as, el regalo mas maravilloso que tengo. Con la vida muchas veces me enoje , pero con los años nos convertimos en amigas, nos fuimos conociendo poco a poco y hoy puedo decir que Soy Feliz!!.
–Marcela Alsina 45, HIV+ 15 years

English:
I am from a beautiful city, like the city of Mar del Plata, with the best sunshine on the sea and gorgeous nights under the stars. Life led me through the path of activism and that’s how I became an activist, feminist and human rights advocate. I believe in mutual respect, I’m not afraid of life; I travel places with light, shadows and at times darkness in order to be with friends, who are the most wonderful present I have. I was angry at life many times, but over the years we became friends, we got to know each other and today I can say that I’m happy!
–Marcela Alsina 45, HIV+ 15 years

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Yo soy muy celosa. Muy agradecida. Soy de perdonar. Soy independiente aunque me gusta que me cuiden. Soy muy fiel a lo que hago y a mis compañeros de hospital. Yo soy y me siento una persona virtuosa. Yo soy muy reflectiva. Yo soy my querida. Yo soy muy censible con el dolor ajeno. Yo soy muy temerosa de dios y la muerte.  Yo soy de dudar siempre tanto en lo afectivo como en las decisiones personales.
–Rosa Beatriz Retamar, 46, HIV+ 10 years

English:
I am very jealous. Very grateful too. I am forgiving. I am independent, although I like to be taken care of. I am true to what I do and to my hospital mates. I am and I feel a virtuous person. I am very reflective. I am very much loved and very sensitive to pain in others. I am fearful of god and death. I always doubt when it comes to affections and personal decisions.
—Rosa Beatriz Retamar, 46, HIV+ 10 years