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

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

 

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+

 

 

What Really Matter to People living with HIV? Sexual and Reproductive Health and Rights (Part 2)

What really matters to people living with HIV?

Well, if you ask me, and quite a few positive people I know, having a pleasurable and safe sex life and, for some, starting a family come to the very top. It seems this is an area of our lives where HIV can have a really negative impact, if badly managed.

One of my concerns looking at the draft document circulated for the Standards of Care is that there were not really any indicators for Sexual and Reproductive Health and Rights. The main focus on the paper was on avoiding onward HIV transmission. Obviously everybody agrees with this. Nobody in a sane mind wants to see an increase in transmission of HIV. However, this is a limited approach. We cannot just stress what we want to avoid, I believe we need an affirmation of what we want in its place.

I will never forget when I was newly diagnosed and  I asked my doctor about pregnancy:   she rolled her eyes and everything in her body language expressed disapproval, even if she told me that I could take AZT during pregnancy to avoid transmission. Because of this I totally put pregnancy out of my mind. I think things could have been very different if she had told me in an uncompromising supportive way, looking in to my eyes and with a large smile on her face: ‘Yes you can have children, and it can be totally safe. People living with HIV can conceive without passing HIV to their partners and have healthy babies. Everybody here in the clinic will support you in this process.  We are here for you’.

I know that even today the pregnancy journey can be filled with anxieties for women living with HIV, and this can deeply affect our mental health and consequently the baby’s health. This could be avoided because  we know that peer lead projects, such as Positively UK From Pregnancy to Baby and Beyond – lead by Angelina Namiba- can play an important role in making women living with HIV have a happy pregnancy, just like any other woman. This approach can improve the woman and the baby’s quality of life enormously. However funding for our project is too scarce to keep Angelina working on it. And many women living with HIV still go through extremely stressful times while they try to conceive or are pregnant in the UK. We could easily avoid this!

And it is not just about having a baby it is also about having the sex we want and we enjoy. Most of the time at the clinic at the best they pass you a few condoms, if you are lucky and you  ask you may get a female condom. But nobody really has the time or the skills to talk to you about your sex life. This is obviously much more the terrain of peer support groups. Moreover, nowadays it is not just about using condoms is also about understanding treatment as prevention, Prep, PEP, and the combination of interventions that can contribute to avoid onward transmission. This stuff is complex and difficult to get to grip with.

Because of all of this I believe that upholding our sexual and reproductive health and rights should be an important heading in the standards of care of people living with HIV. Avoiding onward transmission could be one of the indicators. But an important indicator should also be referral and access to specific peer support services which can give complex information in a form that is easily understandable and can address those issue in an empathetic,  structured and effective way.

What do you think? Do you know of other good indicators for sexual and reproductive health, or quality of life?

What Gives Me Inner-Strenght

Today I took part to an event organized for International Women’s Day by Maureen Bailey from the Inner-Strength Network.

The event was entitled Women Against All Odds and it included  Doreen Lawrence, who spoke of her 18 years struggle for justice and truth following the racist murder of her son Stephen.

I was asked to speak about my personal experience of living with HIV and where I found my inner strength to overcome hardship. No matter how many times I have told my story in public it is always nerve wracking and it makes me feel quite vulnerable and fragile again, which is quite ironic, when I should be be there as this example of ‘strength’!.

I was also asked to give a quote about where I find my inner strength, which was displayed in the hall with those  of famous women. I was quite chuffed that  my picture was next to Michelle Obama’s!

Here is my quote:

“The sense of interconnectedness with other beings and nature gives me inner strength. I feel that my being and my actions are interwoven in the lives of others and of our planet. When I feel I cannot do something I always think I am not doing this by myself or for my self. I continue in the actions of those who before me tried to contribute a positive change, and I think of those who after me will continue to strife for a better and just world for all. I am a small part of something much bigger. I take a deep breath,  feel the ground under my feet, I look at a garden, play with my cat… and keep going.”

The room had lots of picture of ‘Inspirational Women and their quotes. One of my favourites was Maya Angelou:

“If I am not good to myself, how can I expect anyone to be good to me?” and  “Be a rainbow in someone else’s cloud.”

International Women Day is officially on the 8th of March.

World AIDS Day Hardship

World AIDS Day came with a very dark cloud this year. It should have been a celebration of what we have learnt in the past 30 years,  and how far we have gone.  However, the cancellation of the 11^th round of funding of  the Global Fund to fight Malaria Tuberculosis and HIV has created a sense of doom and panic. Many of the advances of the past few years, with  millions of people on treatment in Africa and Asia , could be set back by this. Millions of lives will be lost. It is like having to fight all the same battles again. It’s exhausting.

Networks of women living with HIV and their supporters, including the Global Fund,  have developed a letter to the leaders of the G8 which has been translated, in less than 24 hours in 8 languages (including Chinese, Japanese and Hindi !). The letter can be read and signed by anybody who supports us, individually or as an organization here is the link:

http://www.womeneurope.net/index.php/page/Global_Fund_Petition_to_G8/en

Lack of funds was a feature not only on the international field, but also of our local reality.  Positively UK is  struggling and every penny counts. So this year we decided we would try and go in tube stations to rattle our cans and ask passer byes for spare coins and the occasional note, in exchange for a red ribbon.

I was totally dreading it.

We had to start at 730 am, and no matter how much coffee I drink I am at my most unsociable at that time. Luckily we were  aided by some bubbly volunteers from Grey Goose Vodka. Not even the sight of my very cute volunteer put me in a good mood when I arrived at Euston Station just after 7. When I went to talk to the station manager my worst fears  seemed to become a reality:

-  ‘Morning… I am here for a charity collection, here is the authorization

- A yes,  yes….Just keep out of the way,  this station is very busy

-  OK, will do…

-  What are you collecting for anyway?  People have no money those  days, everybody is strapped up for cash…

- It is World AIDS Day, I am collecting to support People with HIV in the UK

- Well, nobody has definitely any money to give to THAT!

I just looked at the floor in anger.

So I went to stay at a corner while the Grey Goose cutie was at the other corner.

- World AIDS Day, World AIDS Day!

We shouted, while people walked by,  trying to avoid us, not to waste time in the rush hour. When the first woman stopped and said ‘Oh my God I nearly forgot!’ and gave us a few pounds I felt a knot in my throat. For the first 15 minutes I found it really hard  not to cry every time somebody stopped and gave me money.  But after about after half an hour I toughened up and  I was OK.  Euston is the station close to my yoga school,  where I go to practice every morning, so many of my friends from yoga passed by. From them I got money AND a hug.

We collected from 5 stations for only a couple of hours and we reached our target of £2000, which all considered is pretty good. So we will do it again next year. I am ok having had the experience, but I don’t think I am looking forward to doing it again!

 

 

You have got ‘It’ !?!?

Today I went to meet a Member of the European Parliament (MEP) in order to get political support for HIV positive women in Europe. The meeting was organized by Bristol Mayer Squibb (BMS) who are sponsoring  the SHE+ programme , which I co-chair with Prof.  Jane Anderson.

I,  Jane Anderson, and two people from BMS arrived at the meeting in North London,  in the very constituency of Margaret Thatcher.  I was wearing my most conservative suit, it was actually dark blue. I almost looked like a banker.

MEP:  Good morning I am ‘so and so’ , Member  of the European Parliament.

Me: Good Morning, I am Silvia Petretti  co-ordinator of PozFem, the national network of women with HIV in the UK, and also coördinator of WECARE the European network of positive women. I am myself HIV positive. I have lived with HIV for 14 years.

MEP: (eyes widening) You mean you have got ‘it‘ ??!!

Me: Yes I have lived with HIV for almost 15 years`

MEP: How did you get it, was it needles or sex…?

In spite of this awkward start, by the end of the meeting she agreed to  set up a Public Hearing on Women and AIDS  at the European Parliament in 2012.

The Changing Face of Human Rights

A participatory photographic project by Nadia Bettega in conjunction with the British Institute of Human  Rights features portraits of myself and my  partner in crime Angelina.

The show is on at the Horst gallery from the 7th to the 14th of April

The show is connected to the launch of a website in which the participatory process can continue.

Visit the website and contribute your ideas:  http://www.participatoryportraits.org/

Angelina Namiba
I work for an organisation called Positively Women. The most rewarding thing for me is seeing HIV positive women move from isolation to involvement, enabling them to have a voice, and to influence policies that affect our lives.  I speak out about issues affecting these women to challenge the stereotypes that exist about people who are HIV positive. We know our rights, we get the information and we claim our rights. We cannot just sit around and wait for them to be given to us.
The object I chose was my daughter’s scan. This reflects my interest in the sexual health and reproductive rights of women living with HIV. I strongly believe that we have a right to choose whether or not to have relationships; whether or not to have children. I hope I inspire other people by being visible.

Silvia Petretti
I was first diagnosed with HIV in 1997 in Rome. I was shocked by the result.
I wanted to do something meaningful with my life. I came into contact with Positively Women who offered me psychological and social support and many of the services I had not been offered at the time of my test. I now work for the organisation as a community development manager. Women are often still not taken seriously and there is not enough support out there. Stigma, discrimination and gender roles make women more vulnerable. I chose to be photographed with my medication because I believe everyone has the right to health and a sense of well-being. Not everyone who is HIV positive has access to ARV treatment. We are all human and it is important that we know our rights, demand them, and be a collective voice and feel connected to a community.