I was sixteen years old when I was diagnosed with HIV. Like many other women with HIV, I had also experienced gender-based violence: occasionally it was physical violence, and more often it was verbal and psychological abuse, particularly threats. Then, aged eighteen, whilst still in high-school, I accidentally got pregnant, and despite my wish to keep the baby, I automatically assumed this was completely out of the question, because of my HIV status.
Pregnancy is one of the most special and delicate times in a woman’s life, and childbirth is one of the most intimate feminine activities. They are a woman’s basic rights, but they are hard to fulfill if you have HIV. For me, there was no support available whatsoever. My HIV clinic in my home town, Bucharest, Romania, did not provide women with psychological or emotional support. There was just one counsellor, available only upon medical referral. I was given innumerable reasons why I should terminate my pregnancy, the main one being the transmission of HIV. Once I consented to the abortion, it was all arranged for me in no time.
Post-abortion, I had to deal with further mental health issues and depression, but these were not considered a real issue by my HIV clinician, until I started having regular severe panic attacks, making me too scared to even leave the house. The psychiatrist I was finally referred to prescribed me some anti-depressants, and no follow-up appointment.
Ten years on, in my late twenties, my new home is London. Yet all that happened is still so vivid in my mind: the obscure, poorly-lit room in which the abortion took place, the many medical students coming and going during the procedure, the sharp, metallic noise of the instruments. This all contributed to a heightened sense of vulnerability I felt for a long time. Above all I remember the health-care professionals’ attitudes towards the fact that I even dared to think I could become a mother. It was bad enough that I had acquired HIV at such a young age, surely I could not think of having a baby too?
I often think of that abortion. Sometimes I cannot help but get upset at the fact that I was not given an option, that I was not offered the right support, that I was not shown compassion or understanding, and that it was out of my hands to make that decision.
Yet through working with HIV-charities in the UK I have learned that my story is but a small fraction of the million other similar stories out there, stories in which other young women face the same issues. It is just the time and the location that differ: the issues and experiences are universal.
Last month, whilst preparing the newsletter for the organisation I currently volunteer with, Sophia Forum, I opened an email and suddenly felt a knot in my stomach. The email read: ‘HIV positive and pregnant: how dare you?’ These words sounded so familiar, bringing back all those feelings of guilt mixed with shame and anxiety I had experienced as a young woman with HIV and pregnant back in my late teens.
This email was about a recent study launched by APN+, looking at the recent experiences of access to reproductive and maternal health care and services by HIV-positive women in six Asian countries. The study offers a perspective into the social realities of women living with HIV and pregnant, showing that they still experience discrimination and stigma, forced disclosure of HIV, lack of or inappropriate counselling and other mental health support, isolation, coerced abortion or sterilization, and gender-based violence.
My own experiences of gender-based violence as a result of my HIV were not just physical: the emotional abuse also had a debilitating effect. During our long-term relationship, my partner threatened to call the police on me on several occasions; the main reason for these threats was my wish to separate as I no longer felt happy with him. Since HIV was, and still is criminalised, I was mortified each time I was being threatened. I was also living in constant fear of being ‘found out’ as HIV-positive by my schoolmates, friends or neighbours.
UK statistics show that one in four women will experience domestic violence in their lifetime, and 32% of people with HIV in the UK are now women. HIV is now the leading cause of death and disease amongst women of reproductive age worldwide. And women experience a great deal of violence, both as a cause and a consequence of HIV. However, despite the fact that the issues that stand at the intersection of HIV and GBV are immense, there is little support available, if any.
To address this complex, multi-layered issue, and reflecting the recent ‘Intimate Partner Violence in Women Living with HIV’ Homerton study, Sophia Forum has carried out a feasibility study to look at the potential for a national investigation into violence as a consequence of HIV for women in England. Although only a short study, there are significant findings and recommendations that have emerged, which will be launched in October 2012 at The House of Lords.
Meanwhile, the AIDS 2012 Conference is underway in Washington DC. Its theme is ‘Turning the Tide Together’. So perhaps ‘Turning the Tide Together’ will represent the beginning of a new era when the links between HIV and GBV will be appropriately acknowledged, addressed, investigated, and responded to, so that all women living with HIV can feel safe in their clinics or health centres, as well as in their homes. Perhaps HIV-positive women’s fundamental rights to safe and healthy motherhoods with unconditional access to antiretroviral treatment so that their children can be born free from HIV, as well as their rights to other health-care and support will be respected, regardless of their HIV diagnosis. Perhaps AIDS 2012 will finally bring these crucial changes for all women and girls living with HIV.
There have been 30 years of AIDS, and there has been some groundbreaking progress in terms of ARVs and life expectancy, and yet, there is still so much work to be done. Women of all ages still experience huge gender inequalities and HIV issues.
It is time to turn the tide both internationally and here in the UK. I live in hope.
This is one of a series of articles that openDemocracy 50.50 is publishing on AIDS gender and human rights in the run up to, and during, the AIDS 2012 conference in Washington DC, July 22-27
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