How do you become an activist?

I have been discussing with some of my HIV positive friends and fellow activists: how do you become an activist? What motivates you, what inspires you?

One of the answers was: you are self appointed, you make yourself one. And maybe it is partly true.

Sometimes I feel I am doing what I am doing, because nobody else (or just a few others) want or are able to do it. Who wants to be known for having a sexually transmitted disease? What will be the consequences of being so open about my status? I do fear sometimes that some enraged old lover may find this blog and come looking for me with a machete, but I hope that my cat Caspar will defend me fearlessly.

I would like to know more about the moment, or the process that pushes you and makes you step up.  What sparkles that? For me personally it was seeing so much unnecessary suffering in the women I supported. Witnessing women being beaten and abandoned by husbands, young women thrown out of their homes by their parents, gifted and talented girls gripped and paralyzed by the shame and low self esteem caused by internalized stigma. I felt that if I didn’t do something to stop this, if I didn’t try to act on the cause of such violence, I was almost an accomplice, how could I not do something?However, I also soon realized that you can not talk about HIV without talking about power, how it is distributed in our society, and how those who have less, or none, are so much more vulnerable to this small bug called HIV. You can not talk about HIV without talking of gender, poverty, the educational system, the relationship between rich and poor countries, homophobia, racism and a lot more. HIV and social justice are tightly interconnected. It is not just a limited struggle about this virus that affects me. It is about something much bigger: it is about justice.

Also I would have never taken this big step with all the risks involved if it wasn’t for the inspiration I had from other women living with HIV who had already started. We follow on the steps of those who walked before us and we hope that others will follow on our steps. A West African proverb states: we stand on shoulders of our ancestors.

My ancestors are many:  people who dared in face of incredible difficulties to do something to change the minds and hearts of those around them and thus initiate a much bigger change.

One of the ancestors on whose shoulders I stand is Rosa Parks, the civil rights movement leader, and this is how she commented on her decision not to give up her bus seat to a white person, and thus initiate the historical bus boycott:

The only tired I was, was tired of giving in. I knew someone had to take the first step and I made up my mind not to move.

Rosa Parks

World Aids Day

World Aids Day is the one  day in the year when the world remembers about HIV.

Most of the time this means pictures of somebody dieing in Africa. I don’t dismiss the fact that the African continent is carrying the heaviest burdern regarding HIV. However I am concerned that we often avoid looking in our own back yard:  how HIV is affecting people in the UK and how we respond to the epidemic here. It is extremely important that countries like the UK lead by examples and practice what they preach. I have previously talked about how the UK, who supports ‘Universal Access to Treatment’ for developing countries has excluded HIV from a list of communicable diseases that should be treated in the whole population, including failed asylum seekers and immigrants without papers. Why HIV has been singled out as an infectious illness that can not be treated in this country in those already extremely marginalized populations?

Stigma.

It doesn’t only exist in the hearts and minds of people, but also still survives in core health policies and institutions.

This is why I am so happy this World Aids Day saw the release of the first findings from the Stigma Index roll-out in the UK.

Here is an extract from the IPPF press release:

‘ New research led by people living with HIV shows physical and verbal harassment a common reality for people living with HIV in the UK.

Newly published research documenting how people living with HIV in the United Kingdom have experienced stigma and discrimination – and have been able to challenge and overcome it – makes it is clear that the problem is still widespread within UK society.

The research, conducted over the last 6 months, asked people to report their experiences in the last 12 months.

Key findings show that people living with HIV face significant stigma and discrimination:

• 21% (185 of the 867 participants in the research) of people living with HIV had been verbally assaulted or harassed
• 12% had been physically harassed because of their HIV status in the previous 12 months

The Stigma Index is the first research to comprehensively document the experiences of people living with HIV that is driven by people living with HIV.

The results highlight concerns that stigma and discrimination within some parts of the NHS are denying comprehensive and quality care for some people living with HIV and can create obstacles that impede access to care and support services:

• 146 participants (17%) report being denied health services because of their HIV status at least once in the previous 12 months
• 18%, nearly 1 in 5 people, stated that it was clear to them that their medical records were not being kept confidential, a further 42% of participants felt uncertain that their medical records are being kept confidential

Research has indicated there is a need to address attitudes and develop strategies for change, to educate and support the health service to meet the needs of people living with HIV more effectively.

More positively, the research makes it clear that people living with HIV are at the forefront of confronting and overcoming devaluing attitudes, speaking out against prejudice and challenging stereotypes:

• 45 % of people living with HIV had personally confronted, challenged or educated people who were stigmatizing them
• 84 % had supported other people living with HIV ‘

More information is found at the IPPF site.

The findings of The People Living With HIV Stigma Index were presented on November 30th at the Houses of Parliament.

Andy Burnham, MP, Secretary of State for Health, had been invited but couldn’t come and nobody from the Ministry of Heath participated to the launch. Also the ex vice-president from Zambia had been invited , but was absent. What does this tell us about political leadership on the issue of stigma?

In spite of the silence of our politicians I would like to say that people living with HIV did a lot of work:

Adrienne Seed, Poz Fem Regional Coordinator for the North West was interviewed on This Morning on ITV. You can watch her here

Alice Welbourn, also a PozFem member, wrote a moving article for Open Democracy: When Things Fall Apart, where she charts her own personal experiences of what she learnt about HIV, about herself and about others during her early years of living with her diagnosis. She reflects on how traumatic experiences can also be ones of growth and self-knowledge – and how HIV has much to teach us all.

I also had a few opportunities to raise awareness: I recorded 15 interviews in conjunction with Mac AIDS Fund which have been broadcast on over 120 radios on the 1st of December. I also published an article with Open Democracy on HIV and Gender Violence ant this blog was featured in ‘The Best of the Web’ by The Guardian On Line and received hundreds of hits.  I was also featured in the World AIDS Day campaign by the National AIDS Trust.

I know many of the Regional Coordinators from PozFem have been up to several things, so if you are reading this blog and would like to share your contributions on World AIDS Day it would be great to hear it.

HIV: Both The Cause And The Consequence of Violence Against Women

As a woman living with HIV, and as somebody who has worked for the past 10 years at Positively Women supporting countless women through the correlated traumas of an HIV diagnosis and domestic violence and abuse, I was elated to be invited to a Sophia Forum event that focused on the topic of Gender Violence and HIV. In spite of the overwhelming evidence worldwide of the connection between those two phenomena, the link is rarely discussed here in the UK.

 

Professor Charlotte Watts spoke of the way in which poverty, gender inequity and power inequality, make it impossible for women to challenge and overcome social and cultural norms that condone violence, as well as making it harder for women to access HIV services for prevention testing or treatment. Perpetrators  of violence against women are much more likely to partake in high-risk behaviours – such as unsafe sex with multiple partners and alcohol or drug abuse – and therefore are more likely to be HIV infected. Furthermore, as forced sex is physically traumatic and is carried out without condoms, it is more likely to transmit the HIV virus. In reality, this means that in high prevalence countries, like South Africa, women with a violent partner are over 50% more likely to be HIV positive.

 

Women access more health services, and are often tested for HIV during pregnancy, so they are the ones who have to go back home and break the news to their partners. It is not uncommon for women to be accused of ‘bringing HIV into the home’ and this can exacerbate existing or initiate new abuse and violence. We know very well here at Positively Women that an HIV diagnosis can be the trigger that generates violence and can make escaping from it much more complex. In Tanzania research shows that women living with HIV are ten times more likely than HIV negative women to experience violence in the home; in the UK these figures are unknown. The fear that the partner may reveal their status to the wider community is often an insurmountable obstacle to escape domestic violence, as exemplified by this quote from one of our service users:

 

“I was taken to A&E for head injuries after he had punched me and I passed out. I could not tell anybody because he kept threatening to tell friends and family about my HIV status so I remained with him and the abuse”

 

Rahila Gupta, writer and leader of Southall Black Sisters , spoke about gender violence for the Black and Ethnic Minorities in the UK and how both British culture and legislation collude to ensure that violence against women continues. The two year law, for example , means that if an immigrant is married to a British citizen, legally she needs to wait for two years probation before she is given citizenship. This can effectively lock women into abusive relationships. If you put HIV in the mix, things become even more complex. Leaving an abusive marriage for an HIV positive migrant woman in the UK could lead to losing access to life-saving HIV medication. Southall Black Sisters have been campaigning to change this law since 2004.

 

Violence, immigration law and HIV create a bleak picture for many women in the UK. I recently visited an HIV positive woman in Holloway prison; I will call her Olu (not her real name). Olu came from a West African country and she was in her early 20s, she had been arrested for working with false papers. Olu’s tale was horrific. She had been smuggled in this country to be a domestic help. Her boss raped her repeatedly and also forced her to have sex with some of his friends. Olu managed to escape but didn’t have a passport, so she got some false papers to use to work as a cleaner. Olu was arrested while trying to open a bank account, once arrested she was diagnosed HIV positive in prison. I only saw her once. From prison she was moved to a detention centre and then deported back to her country where lack of medication and support means she will probably die. While the UK government promotes ‘Universal Access to HIV Treatment’, many HIV positive people are forcibly deported to countries where treatment is not available.

 

In the UK the number of women living with HIV has been steadily growing since the beginning of the epidemic. Newly diagnosed women were only 20% of the new infections in 1996, and over 40% in 2007. There are now more than 25,000 HIV positive women in the UK and not much is known about the correlated effect of HIV and violence on our lives.

 

Our actions and interventions as women living with HIV are severely limited by the fact that gender and gender violence are totally ignored by the nine-year-old HIV and Sexual Health Strategy . If HIV and gender are not prioritised in the most important piece of national policy around HIV, organisations like Positively Women and others, who offer support to women vulnerable or infected with HIV, will continue to struggle, under-funded and under-staffed. For us to develop a strong campaigning strategy within this context and network more efficiently with other women’s groups working on gender violence is extremely difficult.

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Silvia Petretti is an HIV+ woman and activist based in London UK. She is Community Development Manager at Positively Women supporting HIV+ women around the UK developing self-help groups.  Since 2004 Silvia has been coordinating Poz-Fem UK: The National Network of Women Living with HIV, which aims to skill up WLHIV to influence decisions that affect them.

This article was first published on Open Democracy on 1st december 2009