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

 

Opening Ceremony

The Opening ceremony was a long drawn affair as usual with 20,000 people  from 185 countries in attendance.

I was moved by the speaches of the Russian activists Sasha Volgina and Vladimir Zhoviac. Their presentation was titled ‘We are dying less but we are dying faster’ and drew attention on the struggle of drug users in Eastern Europe and Central Asia.  Only 1 in 100 drug user  has access to ARVs.

Here is a poster that was on the that was on the toilet door.

Overall the update on the epidemic was quite optimistic with reports of 10 out of 20 high prevalence countries where  there has been a 25% reduction of new infections.

The opening also included a very good session by Dr Sharon Lewis on  Progress For a Cure, which is quite an amazing thought.

Political presence was good with speeches from Austrian Ministry of Health and the President of Austria.

Demonstrations from activists were really vocals and highlighted the need to continue to invest in AIDS, in spite of the recession. How come governments found money to bail out banks, but there are insufficient funds  to really make universal access to treatment, prevention and care a reality?

Here are some images on the protest:

How To Stay an Activist

 When we train HIV+ women activists for PozFem, the positive women network we often say that to be an effective activist you must follow the rule of the three Ps:

 Prepare. Promote. Protect.

 I think it was clear from this blog that I was doing a lot of preparing and promoting. Last month I was for the first time in my life on BBC news. Yes, on telly! I was interviewed on the introduction of 60 seconds HIV tests in community settings around London. My response was “It may take 60 seconds to give an HIV test, but it takes much longer to deal with the results if it is positive. I think it is essential that people know their status in order to take good care of their health. However it is also crucial that people who test positive are referred to good psychosocial support, and especially peer support, form others with HIV. Learning to live with this virus is not easy”

 Anyway I was not able to see the interview because by the time it was broadcast I was already practicing the third  P. ‘Protecting myself’.  So I received lots of lovely texts by people who saw it, while lying on a sunny beach.

 Protecting means many things. It means not feeling forced to be open about your HIV status if you are not ready, or if you think that it could be damaging to yourself or your loved ones. It means that you do not have to answer all the questions a journalist asks you. It means you have to make sure that you are not isolated, but have a good network that can support you with love and advice. It also means that you need to know when to take a break, and recharge yourself. Therefore I was protecting myself from exhaustion and burnout with a lovely holiday in Cuba., in which I could indulge my love for salsa dancing and rum.

 I feel ready now to put my head down and focus on ‘Preparing’ and ‘Promoting’ again. The International AIDS Conference in Vienna is just around the corner, and I hope I will be able to blog about it…Actually I promised several people I will. …Anyway, I have already planned more ‘Protecting’ afterwards…

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 and the Media

One of our greatest struggle as people living with HIV is how the media represents us. Most times we are either victims or threats. Those limited and distorted views of HIV fuel stigma and discrimination.

Because of this PozFem UK – our national positive women network- has put a lot of effort in preparing us to deal with the media. We have had several trainings that focused on public speaking, delivering key messages and engaging with the media. In one of our last meetings we talked a lot about how we could be more proactive and more visible. One of our dreams is to have a group interview in which we could tell our stories,  and also speak about of how we have developed into a group of activists. We really would like to highlight how the struggle for PLHIV to be accepted as equal and valued members of our communities, is part of a larger battle for equity, equality, and human rights.

With World AIDS Day coming on the First of December we are getting quite a few requests to be interviewed, but I have still failed to seduce a journalist in this idea of a group interview. Anyhow, I have received  some requests for individual interviews and I disseminated them among PozFem members.

Last week I put one of PozFem  coordinators, L, in contact with a female journalist – a freelancer- who initially seemed really sympathetic. I gave L our guidelines on how to carry on interviews safely and effectively and I encouraged her to go ahead with it,  but to be cautious, and really think through what she wanted to put across. On Friday she called me really distressed because the journalist had somehow convinced her to give her a picture of her and her partner and now wanted to sell the story with the picture to The Mirror! L was really distressed, she regretted having given her picture and she was sure it wasn’t her wish for that kind of tabloid to manipulate her story. She was particularly worried because  she had recently moved house as a consequence  of AIDS related hate crime, and she was really frighten of this happening again and of the consequences on her children and family. I called the journalist and somehow I managed to talk her out of it. L was really upset since she really wanted her story to be out, she was determined to challenge the myths and stereotypes around this virus,  so she was really disappointed when it proved impossible.

To win peoples minds and hearts so that they feel able to show support and solidarity to those of us who live with HIV it is crucial to engage  with the mainstream media, however this is a real challenge, because we need to also protect ourselves and those we love. What can be done? How can we do it?

Inspiring

Last week at the  Treatment Advocacy training organized by Ibase that I am attending we had a very special speaker: Vuyiseka Dubula, a South African woman who is now the General Secretary of TAC (Treatment Action Campaign).

Vuyiseka spoke of her journey from being diagnosed really young in Khayelitsha, a very poor area of Cape Town, and how joining TAC and becoming a treatment activist changed her life. She has had a baby in 2006 who is HIV negative and she is now part of the leadership of TAC, having started as a volunteer and a receptionist. You can learn more about her and other HIV positive heroes here.

Three key points from her long speech were:

1) To develop support and recognition as and advocacy group it is essential to have a campaign with clear objectives

2) A successful campaigning organization needs to have a strong grassroots foundation. It needs to provide, education, skills and support in the community. Even if the organization disappears or is exiled, the work at the grassroots level will stay and grow. This was something TAC learned from ANC (African National Congress), during the struggle against apartheid.

3) Ultimately our goal is to have en equitable health system. We want justice. We are starting by fighting for HIV medication, but it is a much larger struggle. The competition between AIDS services and primary health services is not a real issue. We are developing a better and more just health system by advocating for HIV treatment. It is all part of a larger struggle for justice and affordable and accessible health for all.

Vuyiseka will be talking on ‘Debunking Denialism an the Fight for Treatment’ at Amnesty International in London on the 11th of November at 7 pm. For more information check Amnesty International.

Zackie Achmat on Activism

On Wednesday 14th I went to listen to a lecture by the legendary  South African HIV+ activist Zackie Achmat organized by the Monument Trust at the National Gallery, London.

Zackie was a founder of Treatment Action Campaign the South African activist group that took drug companies to court and made them either reduce the price of HIV medications or allow South African governament to overcome patent rights and buy cheaper generic drugs.

During this battle Zackie, who could have afforded to buy treatment, refused to take it, and nearly died. He was saying: ‘Until everybody will have access to treatment in South Africa, I will not take it’.  It is very rare nowadays to find this level of commitment in action.

TAC  continues being at the chore of the SA response to HIV. Supporting the community in developing treatment literacy and campaigning and negotiating with the Big Pharma for more options and better drug quality. TAC has more then 20.000 volunteers and 60% of them are black women from some of the poorest sections of society in South Africa.

Zackie lecture centered on the state of education in South Africa. Its focus wasn’t HIV, even if HIV was mentioned several times.

During the Q & A at the end of the lectures, one of my colleagues asked Zackie to speak about the process of becoming an activist. What are the important elements?  He pointed out three things (what follow is a summary in my own words):

1) Principle. As an activist you have to have a strong commitment to your values.

2) Taking risks. You need to take risks. Know when and how to do it in order to be most effective.

3) Self education. You need to educate yourself. Read. Keep informed.

Vienna October 2009

I have just terminated attending the second Leadership and Accountability Programme Committee (LAPC) meeting to prepare  for the next International Aids Conference. It has been 2 days of hard work. Yesterday from 9 until 7 pm and today from 8,30 until 4. But I am amazed about how much work we have  done. It is very inspiring to be locked up in a room with such a bunch of committed people.

Our job was distributed between planning plenary sessions (the massive sessions at the beginning of the day where everybody participates), working on 10 sessions which are called ‘Non Abstract Driven Sessions’, and 10 Skills Building Sessions.

The final word on the plenary sessions is given by the Conference Coordinating Committee, and the basic outline of 9 sessions were already given. However we were able to recommend speakers and also to signpost  the topic of 3 plenary sessions. I also really pushed for the recommendation that each plenary should have a positive speaker. I am very happy about this. I have also made a recommendation for a speaker for a plenary session. She is an amazing activist…I will say no more and keep my fingers crossed.  But I have let other positive women from other committees know about her so that they can also support her.

The ‘Non Abstract Driven Sessions’ we planned are also really interesting and include an Open Call for an elected leader to come out about their HIV status. This would have an incredible impact on stigma in countries with high prevalence,  especially Africa. We also have sessions about developing leadership in ‘Key’ population( I have learn that ‘key population’ is a better word for ‘marginalized’).  Other very exciting ideas are:  a session were the youth will hold leaders accountable and another one about De(criminalization), which will include drug use, sexual transmission, sex work,  and really explore the relationship between criminal law and public health.

The 10 skills building sessions were divided into two groups: 5 focusing on accountability skills  and 5 on leadership. I am really happy because we were able to push on the agenda a  ‘Leadership Skills for Women” session, and we hope to have it facilitated by a network of positive African women. Another skill building session we have put on the agenda which is very close to my heart  is leadership skills for drug users, which we hope we can also  offer in Russian.

Those are the highlights of the work we have done, but I tell you, we have been discussing for something close to 18 hours (and probably more since the discussions carried on during dinner lunch and breakfast). My head is still buzzing.

After the meeting I decided to find out the route to  Pure Yoga, the Ashtanga Yoga Studio of Vienna. I studied the map, took the underground, walked around a bit, and now I know the way. Tomorrow, before getting on the plane, I will treat my self to some Austrian Yoga. So I know that when I will get back here for my next meetings, and  maybe even during the conference, I can squeeze a good yoga practice in. That’s all I need to be happy…

Not All Is Well On The Western Front

Wow what a week…It felt like I never stopped. I have just arrived in Vienna for my second meeting for the Leadership and Accountability Programme for the next International Aids Conference.

On Thursday I attended the BHIVA conference, and Gus – who is holding the position at the moment- announced me  as the new Community Representative. The reality hit me that it is going to be hard work, and I will need a lot of support from the ‘community’ I need to represent. I hope that my election will bring about some fresh air. To begin with, it is the first time that a woman, and somebody who wasn’t born in the UK is elected.

I thought that a first step to start to get a feeling  of what the “community’ of people living with HIV believe is important,  was to ask them what I should highlight during this meeting in Vienna, and what they thought could be good topics for plenary sessions. So I posted my question on the UKCAB web  forum.

The response I had is that it is vital to highlight that even in the so called ‘High Income Countries’, there is large potential  for improvement. A lot has been achieved, but there are still huge problems for certain sections of the population to access treatment and testing (migrants in particular), and that travel restrictions an widespread stigma and discrimination still hugely impact on the quality of life of people living with HIV. Since the conference is set in Europe, it should focus also on the realities of those of us who live in Western Europe. Not all is well.

On a similar note, something that really shocked me at the BHIVA conference was what was said during the presentation on the guidelines for treatment of co-infection with hepatitis C.  Somebody asked  how many people are accessing  treatment with pegylated interferon and ribavirin. The answer was shocking: only 50% of those with co-infection are accessing treatment. And who are the excluded? Injecting drug users, who are deemed incapable of sustaining such a difficult treatment. But have they thought about how to support drug users through treatment? Have they looked at solutions? I don’t think so. I don’t think a lot of medical professionals really believe that those are patients who deserve treatment like all the others. It is clear that even in the UK if you are, or have been an IDU, you can be denied your  right to health.