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

A Letter to HIV on the 16th Anniversary of My Diagnosis

Dear HIV,

Today is 16 years I have learnt that I share my life with you. What a shock it was. At the time, it was difficult to imagine I would be alive today. Here we are in 2013 and it looks like we will have many more years together. It is pointless to think what would my life had been without you.I will never know.

I know that thanks to you I had to take a very good look at myself, and the world. I had to look straight in the eyes of death and illness. Thanks to you I stopped taking my life for granted. I had to ask difficult questions to myself. Recognise my fragilities, and my responsibilities. What was most painful: I had to question the possibility of love and intimacy. How difficult closeness becomes, when your body is a potential threat to your loved one. I have experienced fear, rejection and judgment. And I have found limitless compassion and friendship in my new HIV family. Through you I have met people with courage, purpose and humility. I could start a long list here of women and men, gay, straight, young and old, from every continent. You know who you are. Thank you.

Dear HIV, on this day I would like to acknowledge the gifts that came along with the misfortune of having you inside me. Confronting judgment and stigma, I had to learn to free myself. Which is the only way of freeing others, as we are all connected.

HIV you have been a magnifying lens on the important questions about the world we live in. When we think about you we need to think about power. Where there is abundant shared power: you reverse. Where there is scarcity of power: you thrive. It is not a surprise that you still thrive today among those who have less power: women and girls, gay, queer, blacks, people who use drugs, people who are incarcerated, transgender people, indigenous people, poor people. The ironic consequence is that through you, HIV, I have seen a dialogue starting among oppressed and marginalised groups and factions, who would have never spoken to each other otherwise. Together we may begin to see that to truly challenge you we need to question and change the current power structures: economic, social and cultural.

Dear HIV, t oday I want to thank you, because you obliged me to find and recognise my personal power. You made me manifest a strength I didn’t know it was mine. Firstly ,for a long time, I felt weighed down by shame guilt and fear, but had to rise up to it. This was only possible through the inspiration and endless support of my new found HIV family. I am almost sure, without this family I would have lived a much more mediocre and confused life. If I had lived at all.

Finally dear HIV, I can say all those words, because I am still alive. And I am alive because I had the good fortune of being born in a part of the world with free access to medical services, and the medications that keep me alive. Millions of people still don’t .

Thousands die: every day, and today.

The pain for the ones we have lost: never dies.

Coming out HIV positive posing for Marc Quinn cast of my body made with wax and HIV medications, 2004

2009 during photo shoot of Putting Patient First Campaign, with Angelina Namiba, part of the HIV family, and amazing activist

Speaking at the Human Human Rights Rally at the International AIDS Conference in Vienna 2010

S

2011 Speaking at United Nation  High Level Meeting on HIV and AIDS,  representing the Global Network of People Living with HIV

 

SHE goes to the European Parliament!

Brrrrrr! Europe is frozen… I saw it with my own eyes this week as I travelled by train to Brussels to participate to a Public Hearing on Sexual & Reproductive Health and Rights (SRHR) organised by FEEM Committee on Women’s Rights and Gender Equality.

The meeting took place at the European Parliament which for a strange reason has an enormous luminescent heart at its entrance.

I went there as part of my involvement with the SHE programme  an Europe wide project – sponsored by the pharmaceutical company BMS -  which aims to improve the quality of life of women living with HIV, through peer-support for HIV positive women and education of Healthcare Practitioners in order to promote better communication around the needs of women living with HIV.

The hearing objectives wereto select important issues, explore current landscape and provide some recommendations for the future report on SRHR under direction on Ms. Edite Estrela, Portuguese politician and Member of the European Parliament for the Socialist Party.

Renowned experts such us: Dr. Gunta Lazdane, Regional Adviser for Reproductive Health and Research in WHO Europe and Johanna Westeson, Regional Director for Europe of the Center for Reproductive presented their views in different discussion panels, such as health literacy and sexual education, public health systems and accessibility in the EU and the role of the EU in promoting these rights globally.

Overall it was really interesting to see how access to some basic services such as contraception and abortion still really differ around Europe with some countries still experiencing real obstacles: for example  in Ireland this year  a woman died because she wasn’t allowed to have an abortion. It was reassuring hearing panellist affirming that SRHR should be promoted as a fundamental Human Right and that this view will inform the report that will be presented to the European Union Parliament.

At the end of the debate there was time for Q&A. So thanks to a bit of a prompting from Joanna from BMS, I gathered courage, put my hand up,  and invited the panel to comment on the obstacles women living with HIV face in Europe when trying to access SRHR.

I introduced myself as a woman with HIV ( this is in my view an important political statement to counteract the invisibility caused by stigma)   and as a member of  SHE, and  spoke of how many of us face huge judgement and ostracism, from the community and even in healthcare, when we want to get pregnant.  Sometimes we are even pushed to have abortions (as reported by the Italian HIV positive leader Rosaria Lardino  here). I told them how even in the UK, just a few weeks ago I heard young HIV positive women reporting being denied contraception (the assumption being that they should only use condoms, despise widespread evidence  that women with HIV should have access to dual protection in contraception ) .

All experts and MEPs expressed their high interest and confirmed the importance of these issues. Here’s some comments:

• “My recommendation will be to promote integration of services dedicated to women”, Thilde Knudsen, Marie Stops International
• “After experience of workshop with Polish women living with HIV, we’ve learnt that the most important is to help them to fight against their fears and show them that they have a right to require a better care and quality of life. Women should be supported and empowered!”, Krystyna Kacpura, ASTRA network.
• “Create the women network is crucial
•   “Number of women with HIV is constantly increasing in Europe. Physicians should be trained on regular basis and women should have an access to the appropriate services and possibility to basically collaborate with their physicians.” Prof Izdebski (Poland).

After the meeting, the political advisor of the GUE party, to which the chair of the FEMM committee belongs, approached me and asked me to provide concrete suggestions for wording to be included in the upcoming report on SRHR.

To conclude I am really grateful that SHE is now implemented in over 14 countries in Europe (even in my homeland Italy!) and that we will be able to promote our Human Rights at European level, and that hopefully this can have an influence in our local countries.
It is a small step but an important one.

 

Key Populations Living with HIV

 

Silvia and Mluleki, General Secretary of NAPWA,South African network of people living with HIV

This is going to be my last post of the year and I would like to dedicate it to a deeply inspiring meeting I attended in in Cape Town South Africa a couple of weeks ago.

I was part of a privileged group of over 20 advocates who work to promote the rights of people living with HIV defined ” Key Populations”. We were invited to South Africa for 3 days by the Global Network of People Living with HIV (GNP+) to contribute to a consultation on how national and regional networks of people with HIV can work better and being more inclusive and better representative of those groups.

There is still quite a lot of debate about who these “key populations” are: mainly the term is used to define the groups of people who are at most risk of acquiring HIV, as well as those who, when HIV positive, face multiple layers of stigma and discrimination. Previously they were referred as “High Risk Groups”, but this definition was rejected because it inherently “blamed” those who often are most vulnerable, of bringing HIV onto themselves by taking risks.

A narrow description identifies key populations as: men who have sex with men, people who do sex work, people who use drugs and transgender women and men. Many women living with HIV argue that because gender norms and patriarchal power imbalances compound our vulnerability to HIV and exacerbate our experience of stigma and discrimination when living with HIV, we, as women, should also be considered as a key population. There is still not consensus on this.

Personally I agree with this vision that women are a key population, especially since we are so disproportionately affected by HIV. The specific way in which HIV impacts on us, and the importance of advancing the rights of all women, but especially women with HIV, has been creatively adressed in the report produced by UNAIDS “Women Out Loud”, released just a few days ago. The report includes a wealth of in depth gender specific data on women and HIV as well as the contribution of 30 women living with HIV activists, offering insights and strategies on how to end AIDS. I have co-written the second chapter on women who use drugs with Frida Iskander from Indonesia and Fila Jung from the US.

Personally I think that it is critical to include women and a gender analysis in our work with key populations. Challenging gender norms and promoting women”s rights go hand in hand with questioning notions of femininity and masculinity. Overcoming limiting and limited notions of what it means to be a woman or a men are central to an approach that promotes equality and dignity of all gender identities: including gay men and women, bisexuals, transgender men and women, intersex people, and generally the queer community which doesn’t identify with a binary hetero-normative vision of gender roles.

I would like to leave you for this year with some images from the posters we designed at the Key Population consultation in Cape Town illustrating some of the key advocacy issues we face.

One of my favourite posters was a clear call for solidarity among key populations:

I also really liked the advocacy priorities for South Africa: 1) access to good quality treatment, 2) access to good nutrition 3) ending criminal prosecution of HIV transmission.

The invisibility of transgender people, who are disproportionately affected by HIV

The plight of sex workers. Here is Daisy a sex worker, pictured with her high heels and lovely hair, crying because she cannot access health care, testing, condoms, and very often gets criminalised. Daisy was very witty, in face of horrible discrimination. She told us that when she went to the HIV health centre she was refused treatment. They told her: come back with your husband. She replied “I can come back with YOUR husband!”

The divisive and stigmatising use of punitive laws, against sex work, drug use and transmission of HIV.

We also went to visit SWEAT an organization that campaigns and promotes the rights of people who do sex work. Here is a posters used in their advocacy.

It was a deeply inspiring meeting. I was humbled and moved by hearing some of the most appalling stories of discrimination and abuse, but also uplifted by the courage and resilience in the face of enormous hardship, prejudice and rejection. If you are interested you can read more on the meeting here.

Please, please please…. take some time before Christmas to  support the People Living with HIV Call to Action, also promoted by GNP+

 

 

I Have a Dream

click to watch video

For the Italian version please see end of the post.

I have a dream that all women, but especially Italian women, one day will be free!

Free from narrow views of what being a woman is.

Free from being made a sexual object.

Free from all the subtle and less subtle sexual harassments in everyday life and the work place.

Free from violence.

Free to be what we want to be.

Free to have the relationships we really want to have. And not just that we have to conform to some wifey stereotype.

I have a dream that all women can enjoy pleasurable sex when we want and how we want it , and that we have a super easy to use gel, or ring, or other easy way to protect us from HIV and other STD. And many more choices to prevent HIV.

And I have a dream that Italian women who like me have HIV can feel like anybody else.

I have a dream that women living with HIV will take treatments that have been well researched on us during clinical trials, so we can feel totally safe.

I have a dream that women living with HIV like me will not have to live in fear and shame, but we will walk with our heads high and our strength and beauty will be celebrated and promoted.

I have a dream that one day we will not be continuously manipulated by the media and incessant subtle messages to aspire to a one dimensional version of being female which diminish the complex creatures we really are.

I have a dream, one day Italian women living with HIV, and all women, we will all be able to live our lives how we want to live them. One day we will all be free!

Click here to know more about the ‘I Have a Dream‘ project , by the Salamander Trust, and hear what women living with HIV around the world dream.

In Italiano (grazie alla traduzione di Silvia Bandini)

Io ho un sogno, che tutte le donne, ma soprattutto le donne italiane un giorno saranno libere!

Libere dalle visioni ristrette di cosa significa essere donna.

Libere dall’essere considerate un oggetto sessuale

Libere da tutte le molestie sessuali subdole o meno subdole che le accompagnano nella vita di tutti i giorni e nel posto di lavoro

Libere dalla violenza

Libere di essere quello che vogliamo essere.

Libere di avere la relazione che vogliamo veramente avere. E non solo perchè dobbiamo conformarci allo stereotipo della brava mogliettina

Io ho un sogno, che tutte le donne possano godere di un sesso piacevole quando vogliamo e come vogliamo, che sia molto facile trovare un gel o un profilattico femminile o un altro strumento semplice per proteggerci dall’ HIV e dalle altre MST. E numerose opzioni per prevenire l’HIV.

E io ho un sogno, che le donne italiane che vivono con l’HIV come me, possano sentirsi uguali a tutte le altre.

E io ho un sogno, che le donne italiane che vivono con l’HIV come me, potranno usufruire di trattamenti che sono stati ben studiati sulle donne durante gli studi clinici, in modo da poterci sentire completamente al sicuro.

E io ho un sogno, che le donne italiane che vivono con l’HIV come me, non dovranno vivere con paura e vergogna,ma camminare a testa alta e la nostra forza e la bellezza sarà celebrata e promossa.

Io ho un sogno, che un giorno non saremo continuamente manipolati dai media e da incessanti messaggi subdoli che ci spingono ad aspirare a una versione unidimensionale dell’essere femminile che sminuisce la nostra vera natura complessa.

IO ho un sogno, che un giorno le donne italiane che vivono con l’HIV e tutte le donne, saremo in grado di vivere le nostre vite come vogliamo viverle.

Change Starts With Each and Everyone of Us

UK activists with Michel Sidibe:Bisi Alimi, Angelina Namiba, WInnie Sseruma, Silvia Petretti

This was a pretty eventful week. At a very short notice had to go to Turin, on behalf of the
Global Network of People Living with HIV (GNP+) to contribute to a training for the International Labour Organization (ILO). I applaud ILO for putting together a two weeks course on HIV for people who work to promote better and more just work practices. During my session I spoke about the impact of HIV stigma and discrimination in the work place and presented data from the GNP+ research: the Stigma Index and the Human Rights Count. Those two pieces of research provide evidence of discrimination and of human rights violations in the world of work, and the impact they have not only on the individual but also on the household, and especially on girls: who often have to take extra caring responsibility and even stop going to school in order to contribute to their family income, when somebody loses her/his job, because of HIV based discrimination. It is great to feel that I can be part of GNP+ efforts of moving from anecdote to evidence, from evidence to policy, and from policy (hopefully) to good practice. I asked all the participants to take time everyday at the end of the day to think what they could do on a personal level to reach out to people living with HIV, and then scale it up: to their household, their work place, their area, their city their region, their country etc. Change starts with each and everyone of us.

This was on Monday, on Tuesday I had been asked by the UK Consortium on AIDS and Development to chair a meeting between Civil Society and Michel Sidibe the Executive Director of UNAIDS. To say I was nervous is an understatement. And to the budding activists who I hope may be reading my blog I have to say that this is such a part of ‘ becoming an activist” you are given opportunities that you feel are totally beyond yourself. But in spite of the nerves, or the fear of doing or saying something wrong, you have to do it. Especially as people living with HIV our involvement can give always another direction and weight to the discussion. So we need to prepare and try to promote the issues that matter to us…. We can only learn by doing. And other people can only hear the truth from us, who are directly affected.

The meeting was opened by David Bull the CEO of UNICEF UK, who were hosting the meeting in their building. David Bull reminded us of the efforts UNICEF had made to put children at the centre of the HIV agenda and how important the UN commitments to the “Global Plan to eliminate new infection among children, and keeping their mothers alive” (for comments on the disempowering language used in this statement please see this article). As chair of the meeting I used my privilege to remind him that as women living with HIV we are the best ally to ensure babies are HIV free, and the best way to do so it is to ensure that our rights are advanced and protected, and that we can live lives free from violence and coercion. The same point was later on picked up by my friend Angelina Namiba who was talking about Gender and HIV and pointing out how gender inequality in the economic and political spheres still affects us in terms of vulnerability to HIV and quality of life, especially for those of us who are living with HIV. Angelina also applauded Michel for his action following the Washington Meeting with women”s networks. He has since made sure UNAIDS commissioned a thematic report on women living with HIV and leadership which will soon be out, and for initiating the Dialogue Platform for Women and Girls, which will inform UNAIDS agenda on women and girls and seems a real step forward in ensuring the meaningful involvement of women living with HIV in all UNAIDS work.

An important issue was also raised by the UK Consortium working group on care and support: the need to create better criteria to support carers ( who very often are women…another gender issue, really). At present the UN declaration that came out of the High Level Meeting on HIV and AIDS, doesn’t have any targets in this area, and doesn’t address the issues that carers face, who most time work tirelessly without any retribution or recognition.

Michel was very receptive to the whole discussion. He admitted that everybody agrees in principle on gender issues and advancing women’s rights, but still little action ensues…I couldn’t agree more!

Did You Know What Women Living with HIV Want?

Here is a short video made by women living with HIV to support UNAIDS aim that no child may be born with HIV. As women living with HIV this is  of the utmost importance to us, however we also know very well  that this is only possible when our rights are upheld and advanced.

I am really honoured that I have collaborated with all those women living with HIV from every part of the world in promoting our rights and protecting our children.

Another fantastic initiative by UNAIDS is the campaign by young women who were born with HIV here is their vision: The hopes and dreams of young women growing up with HIV. Some of the young women who produced the statement have been  through Positively UK’s peer mentoring programme and have worked with us as youth peer mentors. Once again a clear proof of what can be achieved through our structured peer support model.

 

Our Option: Connect with the Real Lives of Women Living with HIV

 

It is just over a month since my return from the International AIDS Conference in Washington DC and I have spent the past week reorganizing my notes. Watching sessions I missed and trying to distil the ‘juice’ of the conference to offer to my peers that didn’t have the privilege to attend.

Disconnection is one of the first words that come to my mind: disconnection between the world of policy makers and wielders of power and the lived experiences of women living with HIV.

The moment when this disconnection became more acutely visible for me was at the plenary session ‘Turning the Tide on Transmission’, when on the same plenary we had Linda Scruggs, an openly HIV positive Afro-American woman making a call for our direct involvement in the choices and decisions that affect us and UNICEF senior pediatrician Chewe Luo promoting Option B+ the new bio-medical quick fix to reduce vertical transmission of HIV.

In a nutshell Option B+  aims  to test all pregnant women (with no mention of voluntary testing and counselling) and then put all those who are living with HIV on ARVs for the rest of their lives, regardless of their own health needs, regardless of the fact that research still hasn’t identified any further benefits for starting treatment before  CD4 count is below 350. This ‘Option B+’ has only been carried out  as an implementation intervention in the small country of Malawi, for just over one year.  In Malawi it was shown that it worked: it prevented babies from acquiring HIV, mothers were in good health, and it was also emphasized that it had the added benefit of preventing transmission to negative male partners.  Dr Luo summarized: it is simple, it is effective, and it is easy implementable.

I would like to stress that I am all in favour of taking treatment to improve our health, and staying alive, I have been on ARV treatment myself for over 14 years, and I would probably be dead otherwise. However, together with many other people with HIV from all over the world I believe that treatment should be initiated and continued primarily for personal health benefits. In the UK and all European countries  pregnant women who are still in good health, with an high CD4 count, only take treatment during pregnancy and a few weeks afterwards, in order to prevent transmission to the baby, this is clearly explained in the BHIVA guidelines. Afterwards women can stop, and wait, sometimes for many years, until their immune system is weaken and treatment is needed. It has been questioned if this is feasible in low income countries. The cost of monitoring tests has often been seen as a big obstacle. But is it really true that we can test and treat all pregnant women, but we  do not have the resources to monitor CD4 in Africa? Thanks to a very low tech test developed by the Imperial College it is possible to offer a CD4 test for less than $10. I am not an economist, but I am sure that from the money saved from putting on treatment people who do not need it for their own health it would be possible to fund a couple of CD4 count a year for all, and especially pregnant women who receive a positive HIV test.

When I came back to my office to share this bit of news with my team of peer case workers they were all horrified. My team mates were all asking: what has happened to choice? Do they know about side effects? Do they know how daunting it is to take treatment for the rest of our lives, especially if you have been newly diagnosed? How do you take treatment if you have not disclosed to your partner or other family members?  What about women who are in violent relationships and live in fear? What do you do when you have not enough food to eat with your medications? What happens if you develop resistance? Is there going to be second and third line treatment? What  about interactions with other medications?  Would they ever do this in London? Within the team we  have decades of experience supporting women being  on treatment, many of us are African,  and we know that high levels of peer support are needed to stay on treatment and manage many of the psycho-social issues that come with an HIV diagnosis. I can assure you that there is a lot that goes into swallowing a handful of pill for the rest of our lives.

I believe there is no reason why we cannot aspire as HIV positive women from all over the world to put our own health and the health of our babies first, according to our choices.  So dear heads of UNICEF, WHO and UNAIDS,  I know that the model implemented in Malawi has an elegant simplicity, but it is so far removed from our lived realities of taking treatment every day.

I doubt you would ever come to my North London  Hospital, the Royal Free, and enforce something like this on us, because there would probably be an uprising. But it is easy to do this in countries where most positive women are in incredible poverty, live in fear of discrimination from health care providers, where our networks of positive women are for ever underfunded.   It is very nice that you come and share the big stages of those International AIDS Conferences with us,  but what we are demanding is  that you really connect with us and our lives. We want you to listen to what we have been saying for years, as Anna Sango,  a 24 years old Zimbabwean woman living with HIV,  said in the opening ceremony.

How many times do we have to say: meaningfully involve us at all stages of programming. We cannot be just an afterthought at implementation level for your short sighted top down plans. We have a wealth of knowledge and experience that will truly fertilize the planning programmes, their successful delivery and their monitoring. For our health and the health of our communities there is another option: connect with our lives.

If you want to know more about those issues please read Dr Alice Welbourn article:  An HIV-free generation:human science versus plumbing

 

Opening Ceremony

Opening Ceremonies rarely do it for me, however I must say that this time it was moving to have Piscataway ,tribal leader of indigenous people who have lived on this land for over 12.000 years, blessing us and remanding us how we are all connected through our ancestors, not only to each other, but to earth and nature. Well done IAS.

From then on  it went all a bit pear shaped with a series of middle aged men (OK the gay men chorus was nice but it was like another 100 men on stage!). It took quite a few speakers  to finally have somebody HIV positive and under 30: the incredible Anna Sango, a 23 year old Zimbabwean, who called for justice, basic sex education, an end to violence  and against women and more. Otherwise, most of the speakers up to then, had only referred to women as mothers, and treating women only to prevent vertical transmission. WE are not just vectors of infections and vessels for babies! What about those of us who are not mothers?

Michel Sidibe, the Executive Director of UNAIDS,  did a good speech, however he kept referring  to the Global Plan of ‘Elimination’ of HIV all infections in children (and keeping mothers alive….almost as an after thought). I find the word elimination violent, it suggests to me that extreme measures can be taken, and evry time I hear it I recoil.  I know how many women living with HIV are still coerced into abortions, and even sterilisation, as this article published yesterday by Open Democracy by my friend Anca remind us.

Michelle also announced that the Republic of Korea has lifted the Travel Ban for People Living with HIV. Yahey! To conclude he  called for a Robin Hood tax to finance HIV. He reminded us that the end of HIV is possible, but it is not free. It is priceless!

You can watch the webcast of Opening Session here

Living 2012 Day 2

On the second day of Living 2012  many more people arrived from disparate corners of the world, and as always it was moving and slightly overwhelming  to see hundreds of people living with HIV from such variety of countries together.

We continued working on the last two of the three thematic areas identified by the GNP+:  Stigma and Discrimination and Community Mobilization.. Those group discussions were a continuation of the online consultations: carried out in the last months. PowerPoint presentations summarizing the three themes ( Prevention,  Treatment, Care and Support, Human Right, Community Mobilisation) are available to download, with other documents from the summit here)

The discussion was rich, and I must say we were all concentrating hard. I participated to the session on Stigma and Discrimination in health  care settings, and it was heartbreaking to hear so many direct testimonials of lack of care, abuses, negligence, breaches of confidentiality from all over the world. One of the strongest point we made was that we have to continue reporting and collecting evidence on this, as well as strengthen our capacity to develop and use our legal services to challenge those abuses. Accountability  was a recurring theme in most human rights discussions we had.  We must develop systems to hold accountable those who perpetuate human rights abuses.

The second session I attended was on strengthening Networks of People Living with HIV.

One of the great challenges we face is that  of respecting and celebrating our diversity. Looking around the room, I thought, we were doing quite a good job! I have never seen so many church and mosque goers, trans, queer, straight people nodding together before! It is amazing how HIV brings together the most disparate people. However we have to continuously remind ouerselves that there are many different realities in our communities. I personally voiced the concern that by strengthening general networks of people living with HIV certain issues may be weaken, for example gender issues. I know from personal experience how harder we have to work to push for gender issues now that our organization has changed name and remit, moving from Positively Women to Positively UK.

This was my third Living 2012 conference, my first one was in Uganda in 2004 and then Mexico in 2008. I think that in many ways it was the most  successful one in having a wider consultative process and a diversity of view points. However it was deeply affected by the fact that many of our friends and colleagues were excluded by US VISA regulations. Many of our friends from the communities of people who use drugs, people who do sex work, people who have been through the criminal justice system, were not with us and it was really felt. Sadly I think that even some of the summaries of key messages at the end of the conference could have been stronger, for example on the need of integrated harm reduction, HIV and family planning services ( I know it was discussed a lot in our group!).

On a positive note I am humbled but how the voice of gay African men, and men who have sex with men is getting stronger and stronger, compared to the first Living conference I attended. Those men still risk their lives for speaking up and work against all odds in very bigoted communities.

Unfortunately the end of the conference was quite underwhelming, to say the least,  with a closing panel of heads of WHO, UNAIDS who were once again white men, older, from the North of the world. If we want to be ‘Turning the Tide’, as the title of the International AIDS Conference affirms,  we need to have a process that never stops distributing power and opportunities for the most affected populations to be heard and to have agency. I want every single plenary panel to have women, young people, and people who live in the South of the world. We keep saying that we can only do this if we work in union. We now need action: starting from here starting, from now.