At the end of June I was among twenty-four women living with HIV, who met in Manchester in the very aptly named Luther King House. We met for a whole weekend so that we could work together on our ‘dream’, a dream not very far from that of Reverend Martin Luther King.: the dream that one day women living with HIV may live freely in a just world, loved and respected, free of stigma, violence and discrimination. This was the ultimate ambition of the WISE UP+ workshop: Women Inspire Support and Empower to Unleash Positive Potential organised by the Sophia Forum in collaboration with Positively UK , my role was to coordinate and co-facilitate the 3 days together with my friend and colleague Alice Welbourn. The specific aim of the workshop was to develop positive women’s advocacy skills and increase our confidence, so that, we may have more opportunities of influencing decision-making.
On Friday evening I was pretty nervous. You know that feeling, when you are having your birthday party, that nobody is going to come? That’s exactly how I felt as the training was about to start. But obviously it was just my anxiety: all participants arrived, and the room was filled with laughter and chatter. Just by looking around it was obvious that we were a very diverse group of women, ages ranged from 20’s to over 60’s, and many countries of the world were represented: from South Africa to the north of Spain, Wales and Uganda, Zimbabwe, Malawi, Italy and England , and other countries that I now cannot recall
The three days spent together were filled with lively discussions, sometimes things got very emotional and tears were shed, but quickly tissues were passed and hugs and spontaneous gestures of support abounded. We did a lot of sharing, a lot of thinking and plenty of action was planned.
We started our Saturday session thinking about human rights, participation, and of our experiences of living with HIV as women. One of our fist exercises was to look at the Participation Poster developed by the International Community of Women Living HIV (ICW) . The tree provided us a visual map of levels of participation starting from total absence through tokenism to having power, setting the agenda and making decisions.
After looking at the tree we had a discussion on where we would place ourselves in it. I am afraid I still felt I was far away from the top: I would be at a 3 or maximum a 4. I say this because I still feel that very often, even when I am invited at the table, I am the only positive woman there, and far from having any decision-making power. For example just a few weeks ago the London ARV Commissioning Group was set to launch new guidelines on how HIV medication will be prescribed in London. The community was angry because the launch was happening with very limited community consultation on the guidelines moreover the guidelines it seemed to limit patients access to first line once a day treatment. In my role as UKCAB chair and with the support of the steering committee I ensured that many community members came to the meeting. However, it was very clear that Prof. Margaret Johnson and Prof. Brian Gazzard (chairs of the committee) would not allow us to amend the decisions that they had made. I felt particularly awkward as the only vocal woman living with HIV, and I felt still very far from being at the top of the participation tree, where you have the power to set the agenda and make decisions – for an in-depth discussion of the London commissioning process please read Simon Collins detailed article here.
We also had a mighty titled session ‘Power, Control and Women’s Resistance’ with Imkaan – a black feminist organisation. I really liked that Jeanette, the facilitator, stressed that women have been resisting , campaigning and working for a more just world for a long time in all parts of the world, but very often we do not hear about it, as what women do rarely is reported in history books and it is thus silenced.. At the most we hear about the Suffragette. But women have been pressing for freedom justice and better lives, well before and beyond the suffragette movement.
Within this session we defined how power and control is exercised on our lives, especially through violence, not just physical, but also emotional, verbal, institutional, structural, economical etc. What became very clear to me was that in spite of the discussion about all the various aspects of violence against women and girls it was very difficult for us to speak in the first person about the violence directly experienced in our lives, as positive women. Sadly many stories of violence, rape, rejection, and institutional violence came out later on in the afternoon, when we talked in small groups about the story of our diagnosis. Within this session we also had a space to talk about the qualities, abilities, knowledge and wisdom we had developed , from living with HIV, some of the lessons learned from our diagnosis. We especially stressed how those skills, gained from our lived experiences, would enable us to be effective HIV activists.
In the late afternoon our moods were lifted by a poetry session with the talented and engaging Dorothea Smartt, This was a powerful session that let us explore our creative potential. In the feedback, one of the participants reported: “This session really opened my mind in a way I never expected. really awakened the dead brain cells and certainly stimulated my passion for writing in general”. Women were really generous in sharing their poems and we will make some of them available through the Sophia website.
After dinner we spoke about Sexual Rights including the right to pleasure helped by facilitator extraordinaire Angelina Namiba.. I learnt how to say vagina and penis in several languages! The weekend truly offered something for everybody.
Both days started with a 7:30 am Yoga session, which I ran, as I feel an urgent need to share how yoga has supported my development as an activist. Throughout the 3 days we incorporated body language exercises and energizer:s as it is important to observe how our body shapes our mind and vice-versa.
On the last day we created a forest of trees of visions and action. here is one:
One of the things that struck me most of the three days training was once again how difficult it was for us to talk about our experiences of violence, it was only well into the second day, and after creating a safe space to share our diagnosis that women started talking about it. When, towards the end of the training , we did a show of hands to find out how many of us had experienced violence eighteen hands were lifted. Eighteen women out of twenty-four had experience violence, since their diagnosis. Those good with numbers calculated the percentage: 76%. With this level of violence and abuse it is not surprising that 7 out of 10 women who responded to the States of Mind – a mental health survey by Positively UK – reported mental health problems. The connection between mental health issues, HIV, violence and difficulties in accessing appropriate services was also highlighted in the report produced by the Women and Health Equality Consortium ‘I Am More Than One Thing’.
Reading the evaluation forms I realized that the weekend had been deeply transformative for all of us involved. We all came away with plans for specific things we are going to work on to effect change and improve the lives of women living with HIV.At the same time it is obvious that the immense task of ending the endemic violence we experience , should not just rest on our shoulders as women living with HIV.
Much more needs to be done to create opportunities to report the violence, overcome the trauma and open routes to safety, love and respect. I am now due to write a detailed report for Sophia and I aim to include clear suggestions on how other people – doctors, policy makers and other citizens can contribute to create a just and safe wold for all women and girls living with HIV .