BY L’ORANGELIS THOMAS NEGRON
(The following is an un-edited version of the author’s original report, to visit the author’s blog-space in spanish go to https://rojavida.wordpress.com)
When I wrote the idea sounded simple to make, very different from what it came later. Since the promotion, recruitment, development, coordination and mobilization had barriers, but these do not compare with the result, learning and the ability to generate something bigger. Every year the funding for activities and unrelated matters to the clinic care or outside the clinic is lower, for that reason, the spaces to handle psychological, emotional, social affairs and education about our rights, including sexual and reproductive medication, self-management concept and stigma are endangered, and this is worse for those who do not reside in the metropolitan area. These issues are simply not a priority for those who mostly give money and / or state, therefore, most agencies that provide services don’t have the opportunity to devote time and energy to this. However, I have had the experience of listening to health care providers talking about the irresponsibility of those who live with HIV on our dates, ARV therapy, among others. So I do not know how objective is the talk of responsibility when we/they rarely promote the few spaces available, while, there’s a feeling of an apparent “control” over what activities you have access, depending on the agency in which you receive services. We have policies and studies that talk about the benefits of “diagnose and treat” without not even make space for acceptance, support network, when they feel ready to start therapy and mostly, not focused on the needs of the individual. In a very personal way, it seems that we promote clinical studies than social studies, and that these policies and studies are not necessarily based on the needs of people.
The first challenge, I would say that the main and largest, was the promotion in clinics and health centers. Not being a health care provider, or represent an NGO / CBO nor the Department of Health, did not allow me to recruit a greater number of young women. In a nutshell, I remember being told at one of the clinics that his “patients almost do not participate in anything,” another that “it would be difficult to promote it because they must ask for approval”, but insisted that didn’t wanted to be a barrier for me. To top it off, I was asked to speak with someone in the Department of Health for “a memo” and indirectly asked for my CV. On the other hand, others health centers let me post some promotion in their facilities, shared them between their networks and even called their participants to tell them about the activity. For that, I am more than grateful, because not everyone go, or every day or every month at the clinic, therefore, to have the promo visible is not always enough. Also the trust of my capabilities, without being a health “provider” or “professional”. So, that how “making a difference” and to “go the extra mile” really looks like. Thinking about realistically limitations, thinking of the wellbeing and creating awareness that “treatment” is not limited to have the medication available, but to have a focused, whole service and based on rights, dignity and free of stigma.
The International Community of Women Living with HIV (ICW), has more than 20 years and is the only global network by and for women living with HIV. It exists to guide efforts towards obtaining and improving the quality of life of women living with HIV. This, by mobilizing, organizing, advocacy, mentoring and increasing awareness on issues that directly affect our lives, the lives of women living with HIV. The Women’s Global Network for Reproductive Rights (WGNRR) which has over 30 years of experience in the mobilization and campaign themes of Health and Sexual and Reproductive Rights, is based on the Global South network driven by its members that builds and strengthens the movement for Sexual and Reproductive Health Rights (SRHR) and justice. They work to recognize the SRHR of all people, with special attention to the most marginalized. Together, ICW and WGNRR, decided to form a global campaign under the slogan “More Than Our Status”, with the hashtags #DoYouSeeHIV. The purpose, raise awareness of how to reduce HIV stigma can positively change the lives of women living with HIV and improve their access to sexual and reproductive health services quality. This global campaign was the result of the strategy meeting of Young Women in Abuja (Nigeria) in the month of April, where 22 young activists in HIV and Sexual and Reproductive Health and Rights met from Nigeria, India, Kenya, Zimbabwe, Russia, Jamaica, Canada, Mexico, Puerto Rico and Vietnam, and establishing strategies on how to strengthen a coordinated response to address stigma for women living with HIV access to sexual and reproductive health. Puerto Rico had the opportunity to make an initiative, which was held the workshop “BodyMapping”. Not knowing if we required any permission, not that we actually care, we take a magic corner in the Luis Muñoz Rivera Park of San Juan, on Saturday August 15, 2015, from 9:00 am to 3:30 pm. Initially, about 18 girls responded the call, of which 14 said they would attend, but just 10 confirmed and 8 arrived.
The workshop consisted of an informal, open and honest conversation about sexuality, reproductive and our experiences and concepts about it. Then we would be painting our uteruses as we feel it. We started very simply, presenting and sharing what was the motivation to get there. From the feeling of loneliness and need for learning and growth, to be able to take their daughters and have
transportation, were some of the most significant motivations. Just before passing to the conversation, we share a word that defines each one of us and in unison, saying “I am because you are” we define ourselves collectively as “extroverted, committed, happy, hardworking, strong, friendly, outgoing, sincere, sexy, challenging and grateful.” As we talked about womanhood and how each of us expresses it and feels it, and how it intercedes in our health and vice versa. The meaning of sexuality that we have freely built and imposed by society, the integration of “soul and spirit” and how we relate to what is and those around us. The perception of gender roles, motherhood, menstruation and pleasure. How we feel when we are subversive and messages and treat that we receive. The emotional and psychological burden of religion on how guilty or not, we may feel about how we act and what we choose to do with our bodies. About the permission that we give to ourselves to assume the autonomy, control and the power, from something as simple as getting a tattoo, piercing or cutting hair, to the most complex, on the rights and sexual and reproductive health, as to be coerced into an abortion for being HIV positive. We discussed the experiences of disclosure of diagnosis and types of stigma, including the route of infection. Space for diversity of thought was given, and the opening was such, that diversity was merely a nutritional component. In short, it was a day of learning, growth and horizontal exchange, respect and appreciation. For me it was a tremendous learning, especially for my personal growth and look at all those things that I need to improve upon to generate this kind of discussion. It was an experience in which I could refresh my local work beyond activism, as a young woman living with HIV. Back to basics, talk about what happens to us and how it happens and how is repeated with other girls.
BPB. 17 Barceloneta: Her paintings depicting nature and human nature, which often she cannot understand, that flourishes and gives life. She says these experiences need to be heard to greater learning.
FMC. 29 Toa Baja: Describe her uterus full of life and smiling. Red because it is full of love, accompanied by the African symbol that she simply liked, which actually represents “harmony.”
JGF. 27 San Juan: Painted her uterus as it “should be”, because she’s very diligent in what she does. Says about the activity that needs to be repeated with other women, and that again she can bring their daughters. Togo Brings attention to the need to finance these initiatives and that their ideas are more than heard.
KBC. 39 Barceloneta: Despite passing the age required to participate, she makes tremendous contribution through her experience. Since a very young age he was diagnosed and her uterus was
removed. Sees her uterus, “Fallopian tubes” she clarifies, as witches and angelic wings capable of giving love and passion. Use the black and red representing the fire and secrets beneath them.
RGA. 27 Guaynabo: In her piece she represents 4 ways; noble, peace, humility and honesty, which are her engine to deal with her daughter and says that without it, would not achieve her objectives. Share that in this activity she acquires personal development, new friend, and no longer feels alone and some tools to communicate.
BMA. 23 San Juan: She paint a naked women, color earth, color of life. In her womb, a spiral that makes life and her hair the leaf. Added flowers for diversity and says she feels refreshed with experience.
YHM. 19 Barceloneta: This young women represent her uterus as the strong trunk of a tree, with flowers at her sides and from her ovaries the roots. She learned that “sexuality of women should care, respect and give that love it so richly deserves, that we are blessed and privileged and we shouldn’t mind the stigma that others put us, we have to be confident on what we are and do what one really makes us happy and not what others THINK “.
SMG. 23 Bayamon: According to her, her uterus stands out and for it sexual diversity and the sun represents her light. Describes the activity as an innovative and different, because he never had the opportunity to discuss these issues. Speaks of strengthening support networks among us to facilitate participation in these activities and more education on sexual health of women.
This is the first time someone trust, not only in my idea and criteria, but in my ability and honesty as to support and fund an initiative, of which the only prove that they had and the veracity of the activity, it was my word. For this, I thank to ICW and WGNRR for the trust and support. I appreciate to those service providers and persons who supported the promotion, and took the time to call their participants to give them the information. Also to those who supported with transportation, food and care of children. Especially to the girls, to trust the process and honor their word, since the day of the event, all they said they would, they arrived. By openness, shared and given the opportunity to spend a spectacular day.
We continue spinning thoughts and constructing networks…