Silence is Volence

Receiving an HIV diagnosis is often experienced in terms of violence. Stigma is violence: and it is often the first symptom of HIV, manifesting as shame, guilt and blame. Those feelings are experienced today, here in the UK. Many of the newly diagnosed women I meet tell me: “I would rather have cancer than HIV”. I find it really saddening, especially when HIV treatment is in most cases more successful and easier to take than cancer treatment. And I do really hate making comparison between experiences of illnesses.

For many women, in this country, and around the world, the link between violence and HIV is extremely direct. Women in violent relationships are much more likely to become HIV positive:

1)When a relationship is violent and sex is coerced women cannot negotiate safer sex.

2) Forced sex is more likely to cause tears and injuries to the vagina creating routes for HIV to get
into the body.

3) Men who are violent have often other high risk behaviours: multiple sex partners and drugs and alcohol use.

Inequality is also a form of violence. It is not surprising that out of 4.5 million young people (16 to 24) with HIV 3 millions are young women, mainly concentrated in Subsaharan Africa. The links between poverty, violence against women and girls, and HIV are easily visible.

Violence does not stop when one gets an HIV diagnosis. Revealing we have HIV can start a violent response. Tragically this is especially true for those of us who are diagnosed during pregnancy. An HIV diagnosis can also make violence escalate. As women living with HIV escaping an abusive and violent relationship is very difficult. The fear of our HIV status being made public is paralysing, alongside the fear of not finding another partner who will accept us and love us, as we have HIV. The shame linked to being at the receiving end of violence compounds the shame of having HIV: silencing many of us. We hesitate to go to the police, as many have faced ignorance around those issues in many institutions including prosecution services. The fact that HIV transmission is often criminalised also stops us from accessing support. What if we are accused of giving HIV to our partners? How will we prove our innocence? What will happen to our children if our status will be revealed? Will they be assumed to be HIV positive? Will they be taken away from us? Will they be bullied and shunned at school?

A recent study in an East London hospital revealed that 52% of women with HIV who responded to a questionnaire had experienced Intimate Partner Violence in their lifetime. A participatory study lead by women leaving with HIV in the UK, revealed the extent and the breath of the violence.

Violence is not just at the hands of our partners: institutions are violent. For example, here in the UK, we are sometimes blamed for wanting to be mothers by the healthcare workers who should be there to support us. Young women with HIV are denied contraception, even in the UK. In many
other parts of the world we get sterilised without our consent.

On the 14th of February the Sophia Forum, with Positively UK“s support, will hold an event at the House of Lords, synchronised with the One Billion Rising mobilisation, to launch the report on a feasibility study on the links between HIV and Gender Based Violence in the UK. It will convene: women living with HIV, policy makers, healthcare professionals and other service providers. We will ask for our realities to be acknowledged and for our basic human rights to be upheld. We are asking for action to end the violence against us.

Please take a minute to think what action you could take. We want to be heard: silence is violence, ignoring us is violence.

To read more about the issues:

Violence Against Women Living with HIV/AIDS: A Background Paper Fiona Hale and Marijo Vazquez

Visibility Voice and Vision a Strategy for Women Living with HIV in the UK

Is somebody taking notice of the links between Gender Based Violence and HIV?

Robbed of choice: forced and coerced sterilisation experiences of women living with HIV in Kenya

Is somebody taking notice of the links between Gender Based Violence and HIV ?

Gender Based Violence (GBV) is a huge issue for women living with HIV.  Internationally the reciprocal links between GBV and HIV have been widely recognised. However in the UK, up to now,  they have been widely  ignored  by researchers, policy makers and service providers.

Positively UK was started as a women’s  organization over 25 years ago and in our long experience of supporting women living with HIV  it has been blatantly clear the impact that violence:  physical, psychological, legal, economic, cultural, and structural,  is having on us.

It is not difficult to see how the biological vulnerability of women to HIV is compounded by several  forms of violence. Our receptive bodies are already physiologically  more susceptible to HIV, moreover  the lack of access to women’s controlled prevention  methods, and, for many of us, the inability to negotiate condoms and safer sex practices,   are all directly connected to gender inequalities, and result in increased vulnerability to HIV. Moreover many women experience coerced and violent sex in their lifetimes, and this also increases the chances of acquiring the virus. Coerced sex can often cause injuries to the vagina, it is often carried out without a condom, and men who perpetuate it may also engage in other risk behaviours. It is not a surprise that globally over 50%  of those living with HIV are women, and even in the UK and other European countries women are over 30% of the HIV positive population.

Very often after diagnosis women who are in violent relationships see the violence escalate. Women with HIV who enter in new relationships may regularly face rejection or abuse. The double stigma both linked to HIV and GBV means that women rarely  talk about their experiences of violence  and do not access very needed support.

Experiencing  of violence leaves  profound and long lasting scars, as expressed in the words of a woman living with HIV who had a first hand experience of GBV in the UK:

“It doesn’t matter how long ago it’s been, the violence still goes on. I’m not angry but it hurts when you think about it and a very small thing sets you backwards again. Sometimes your confidence goes to zero and to lift it up again is hard work. I’d like a man. But I’m always cautious. I’m always measuring, comparing – he says one word and I think ‘that’s how it started with the other one’ so I’m not going there. Even a very nice guy, you turn him away because you still think of all the rapes that went on, all the insults that went on, all the demeaning behaviour”. (Positively UK et al. 2012)

The correlation between GBV and HIV has been extremely evident to our team who facilitate support groups and answers the help line. However the silence of policy makers has made our work more difficult, because of the limited funding to offer specific services to women with HIV who experience violence.  The lack of funding and the consequent lack of awareness has also resulted in health care providers and social services not being able to detect the violence and refer to appropriate services.

In order to overcome this vacuum of information and consequent lack of policy , Positively UK, Sophia Forum, WECARE+. PozFem UK have joined up to conduct a  qualitative participatory research. We organised a focus group with 6 women with HIV who experienced GBV in the UK. The focus group pointed out some key aspects of GBV for women living with HIV in the UK:

• The breadth and extent of violence, including physical, sexual, psychological, economic, legal & institutional violence
• Escalation of already violent relationships after HIV diagnosis
•  Women’s silence about GBV because of complex emotional bonds with persecutors and stigma around both HIV & GBV
• Legal, financial & psychological issues relating to dependence on perpetrators of violence
• Fault & blame ascribed to women living with HIV & the use of blackmail by violent partners, especially within discordant relationships
• The absence of structural support networks for UK women
• The enduring burden of violence & its implications for future relationships & mental health
•  Multiple problems with prosecution process

Our group also offered  some recommendations for service providers and policy makers:

• Better training for healthcare professionals in recognising signs of violence
• The Government must formally recognise the link between GBV & HIV
• Importance of peer networks to empower women with HIV to overcome GBV
• Better human rights awareness for women with HIV

Our final recommendation was to carry out more in depth qualitative and quantitative research in this area.

Women living with HIV  involvement on GBV and HIV research is crucial, not only because it is in line with WHO (2001)  recommendations, but also because it can ensure  that we have a process that increases our wellbeing and empowerment. The focus groups used very clear ethical guidelines,   which we hope can be extended to other studies in this area. The  guidelines and participatory approach were extremely important  because: firstly they ensure that women living with HIV with personal experience of GBV are able to set the research agenda, and second, the emotionally supportive and collectively invested nature of our peer lead group work,  means that recalling episodes of violence does not cause us further trauma.

Women living with HIV who contributed to the research also offered a positive definition of what we would want to see replace GBV:

‘a world where women living with HIV feel safe, respected and secure; where we can experience physical and psychological wellbeing and fair treatment: a world where power is shared.’ 

I hope that we are starting to work towards this vision. The light of hope is sparkled firstly by the fact that  our research was acknowledged by the British HIV Association, and it was presented as a poster at BHIVA spring conference, in Birmingham.

My hope is also ignited by the fact that there seem to be a synergy with other research. At the  BHIVA conference another important study on GBV in the UK was  presented  by Dr. Rageshri Dhairyawan, which showed that 52% of women living with HIV  accessing services at Homerton Hospital, an East London clinic, who responded to a questionnaire, had experienced Intimate Partner Violence in their lifetime.

Moreover Sophia Forum is conducting a feasibility study  on GBV among organizations working with people with HIV and violence against women and girls in the UK, as well as a literary review.

I strongly hope that this tide of research and advocacy will continue and that it will keep at the centre women living with HIV, not just as objects of research but as central partners of academic and scientists and  above all as effective agents of change.