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Women living with HIV: a matter of safety and respect

Last month the results of a global survey on women living with HIV were published. The survey was designed and conducted by women, and commissioned by the World Health Organisation. Will the findings be acted upon? 

In 2014 the World Health Organisation commissioned the largest international survey to date on the sexual and reproductive health and human rights of women living with HIV. The survey was designed, led and conducted by women living with HIV.  Last month the global survey was published: Building A Safe House On Firm Ground

I live in Canada in a small rural setting, and I have been living with HIV for many years. The survey calls for "safety, support and respect for all women at all times".  It is my hope that readers examine the survey in its entirety.

A total of 832 women from 94 countries, aged 15-72, with another 113 women in focus groups from 7 countries took part in the survey. Violeta Ross (Bolivia) expressed how "This consultation means for me, the opportunity to learn from one and other. Women living with HIV are the best positioned for the design of sexual and reproductive health policies".

The single most prominent finding of the survey was how women living with HIV experience high rates of violence, on a continuum throughout the life cycle: 89% of the respondents reported experiencing or fearing gender-based violence, before, during and/or after HIV diagnosis.

Violence was described as physical, psychological and/or financial, with an HIV diagnosis or disclosure acting as a trigger for violence at times. Over 80% of respondents reported experiences of depression, shame and feelings of rejection. Over 75% reported insomnia and difficulty sleeping, self-blame, very low self-esteem, loneliness, body image issues, or anxiety, fear and panic attacks, whether before, or as a direct result of, or after diagnosis.

Poverty ties in with violence, along with gender inequality. Many women with HIV come from diverse backgrounds, such as drug use, sex work, being lesbian or transgender. Women are often in relationships where they do not have the financial means to leave and are reliant on their partners, placing them in an unequal power dynamic and open to further abuse and blackmail.

The survey reveals the way in which the lack of human rights-based approaches to women's services contributes to mental health issues, lack of satisfying sex lives, and lack of sexual and reproductive rights. All women with HIV have the right to achieving their sexual and reproductive rights as a fundamental part of being human. The survey also highlights the importance of women needing to achieve their own rights in all these areas in order for them adequately to support their children and partners – which women with HIV are very much wanting to do.

The report strongly recommends the meaningful involvement of women living with HIV as active participants in all plans and research which affects them. 

As Sophie Strachan of the UNAIDS Dialogue Platform and the Global Coalition of Women and AIDS explained, “The main importance of this consultation is that WHO hear and take up our recommendations, listen to our voices (as experts) to hear the needs of women living with HIV and include peer led support/services in their guidelines. We need gender specific policies to ensure the rights of women in all our diversities are met."

Gender-based violence against women living with HIV is a world-wide phenomenon. In a Canadian context it takes place on a continuum from polite rejections, discrimination and regular experiences of being stigmatized, to more overt forms of violence including physical assault, threats of violence during disclosure of their HIV status or with partners who use the secret of “shame” of their HIV status to control women and keep them from leaving a relationship.

Women living with HIV in Canada often have children and cannot find adequate child care. So they cannot spend time furthering their education and are therefore trapped in a poverty cycle which is often impossible to break. This further exacerbates the potential for abuse and violence.

Indigenous women in Canada represent a small percentage of the overall population, but are over-represented in the number of women living with HIV in Canada, as are women of colour who have emigrated from other regions of the world. Women living with HIV in Canada often live in isolation, keeping their HIV status private for fear of backlash from the community and to protect their children from stigma and discrimination.  Living in isolation leads to decisions to not seek treatment, not seek care and support to deal with stress and anxiety, and not take prescribed medication on a regular basis, if at all.

It may come as a surprise to learn that Canada has one of the highest rates of criminalization of HIV for non-disclosure in the world. This needs to be addressed to alleviate fear and silence about HIV. Canada demands that other countries adhere to basic human rights practices, yet at home we do not. Fortunately we have a strong organization, the Canadian HIV/AIDS Legal Network, which lobbies for de-criminalization of HIV and changes in our government's position on this topic. Criminalization of HIV in fact serves to increase HIV transmission. With the onus on the HIV positive person to disclose their status to sex partners or risk prosecution, individuals assume and expect that everyone living with HIV will disclose, and they rely on this and do not ask questions, do not insist on the use of condoms or any safe sex practices. This causes a false sense of security for people on the dating scene, and indirectly creates a situation where people living with HIV are used as part of screening mechanisms for safe sex practices, with the rationale that a person can rely on prosecution if and when a person does not disclose their status. It places the burden of disclosure on the person living with HIV, and does not emphasize the need for each individual to take responsibility for their own sexual health and well being. Laws will not protect people from contracting HIV, personal responsibity for oneself will. 

Two recent court rulings in 2013 and 2014 against women in Canada for non-disclosure of their HIV status highlight how the law lags far behind science in relation to the virtual impossibility of transmitting HIV if one has an undetectable viral load. There is a critical need to decriminalize HIV; there is also a need for everyone to take responsibility for their own sexual health. 

Services to support women living with HIV in Canada exist in a splintered fashion and vary from province to province.  In Quebec I have had many conversations with women living with HIV, but there seems to be no clear or definitive answers about why women are so reluctant to engage in services. Service providers do not have the solutions around engaging women in services either. From my own point of view I would like to see more concrete and  practical services which will enable us to learn new job skills to integrate back into the work place.

A human rights focus is needed as much in Canada as it is in the so-called “developing” world. The many components on the continuum of violence towards women living with HIV need to be addressed, including financial inequality, need for adequate housing, job security and human rights-based approaches to employment and care.

There is an obvious need for a national cohesive voice for women living with HIV in Canada. What needs to take place here in Canada, as everywhere, is a serious attempt to practice the meaningful involvement of women living with HIV in the full cycle of all aspects of planning, programme implementation and evaluation. We are the experts, and we alone can identify what our needs are and how they can be addressed. This was clearly demonstrated in the Salamander Trust survey, which has produced the most meaningful and authentic results I have read to date.

World Health Organisation (WHO) guidelines now need to be updated to reflect both the findings of the report, and to reflect recent political and biomedical aspects of the HIV response. 

Building A Safe House On Firm Ground.  Principal author, The Salamander Trust, together with ATHENA Network, the Transgender Law Center, the International Community of Women living with AIDS Zimbabwe and Asia-Pacific chapters and GNP+. The survey was commissioned by the World Health Organization.

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