Posted on 19 July 2010.
©IAS/Steve Forrest/Workers' Photos
TODAY is the last day of the XVIII International AIDS Conference in Vienna and for the first time the plenary session was dedicated to HIV in Prison.
Dmytro Shermebey, one of the leaders of the All Ukrainian Network of People Living with HIV opened the session.
He spoke of his personal experience of spending nine years in a Ukrainian prison. While he spoke, pictures of prisoners and prison cells were projected on the massive screens in the plenary hall. Dark spaces filled with emaciated young men, barely over boyhood, with spider arms, reminiscent of Auschwitz.
Prison meant: hunger, lack of sanitation, overcrowding, lack of air. It is not surprising that to cope with those conditions prisoners had to use the most powerful painkiller in the world: heroin! Harm reduction, drug substitution therapies, clean needles and condoms are not available in Ukrainian prisons, a problem that majority of prisons around the world share.
Dmytro recounted how syringes were shared by prisoners. The same blunt needle would be sharpened on a stone over and over again in order to be reused. It is not surprising that HIV prevalence in the global prison population is always much higher then in the general population.
Today’s plenary showed the world that those young men were clearly not only deprived of their liberty, but also robbed of all dignity, food, and health: all fundamental Human Rights. Dymitro explained to us that he survived because he fought. But, many of his friends have died and are still dyeing.
I have been visiting women living with HIV in prison since 2001, when I started working for Positively Women (now Positively UK). Dmytro’s story made me appreciate all the good things in British prisons: above all access to ARV’s and methadone. Well, this was the experience of Positively UK’s outreach and peer support team, anyway.
However, I also know too well how damaging, traumatizing, and disempowering the experience of prison is, especially for women. So many of the women I see in prison have tragic pasts: addiction, abuse – including sexual abuse – neglect, and poverty are recurrent themes. Many may also be suffering from mental health problems.
One of the biggest problem about the situation of women in prison, even in the UK, is that it is severely under-researched. For ‘security reasons’, everything about prison is very guarded.
From my experience of supporting hundreds of women, I can affirm that prison is very harsh for anybody, but the added burden and terrible anxiety of having to guard the secret of HIV make it doubly difficult to cope with.
In the UK prisons, women are a fast-growing population. According to the Prison Reform Trust Report of 2006 in England and Wales, the number of women with HIV has increased by more of 200 per cent in the past ten years compared to a 50 per cent increase in the number of men in prison during the same period. At present, there are more then 4,200 women in prison in the UK.
This increase in the UK follows global trends towards a greater use and popularity of imprisonment and a lack of interest in constructive alternatives such as non-custodial sentences. Those would be particularly relevant to drug offenses and non-violent theft. Drug offenders in particular, would be better dealt with by therapeutically addressing their addiction.
Prison has a tremendously harsh effect on women, for several reasons. Firstly, women offenders are often the sole carer of their children. Their imprisonment and separation from the children can cause major psychological traumas, which are very difficult for both mother and child.
This has grave repercussion for all of us in the communities were those children live. If a mother is the head of household, their incarceration could result in the loss of their home, and serious disruptions to the lives of the children.
Since there are fewer women’s prison, women are more likely to spend time in a prison which is far away from where they live, so that visits from family and friends are extremely difficult. Women in prison can experience profound isolation, which has an effect on their often already compromised mental health.
Additionally, because there are few women’s prison, women convicted from a wide range of offences are often imprisoned together. This means that the overall regime will be determined by the maximum-security requirements of a very few high-risk prisoners. Overall, the prison system was designed to deal with male prisoners, because of this it actually often discriminates against women.
If you add to this bleak picture and hurdle of living with HIV, and the possibility of diagnosis while in prison, it is clear that there is an extreme urgency for a radical prison reform. The Prison service needs to take into account gender equity and the right to health of women prisoners.
A comprehensive reform of the criminal justice and prison system was called for in today’s plenary session by Manfred Nowak, the UN Special Rapporteur on Torture. He stated: ‘Prison Health is Public Health’.
I applaud the International AIDS Conference for having dedicated for the first time a plenary to Human Rights violations in prison. However, I hope that this is not a one off token session. I believe that it is crucial to discuss more of the gender dimension of prison and how it increases women’s vulnerability to HIV and negatively affects physical and mental health.
We still know so little about this, especially on a global scale. Hopefully we will do this in Washington in 2012.
SILVIA PETRETTI … DAY FOUR: EMOTIONAL EXHAUSTION, SEX WORKERS AND HIV…
IT’S ALL getting a bit overwhelming!
The third day Wednesday, the theme for me was physical and emotional exhaustion. I wasn’t the only one. Just by looking at people I could tell that many conference participants were experiencing an energy low. It takes a lot to absorb all the enormous amount of information, ideas and emotions that are present here.
In spite of this I managed to facilitate two sessions at the Women Networking Zone. One on women and networks, and another panel discussing the effects of laws criminalizing women’s sexuality.
I sat beside women from: Venezuela, Germany, South Africa, Malaysia and the US. We shared our different experiences of mobilizing and politicizing women in order to challenge laws that criminalise homosexuality, criminal prosecution of HIV transmission, and sex work.
At the end of the debate a sex worker from Malaysia took the microphone and said: “I have been a sex worker for 15 years, suffered a lot of abuse from the police, and this is the first time I speak up. It has taken me 15 years. But I will continue when I go back to my country. Having met all of you has given me the strength to speak up.”
One of the overwhelming aspects of this conference is the amount incredible personal transformations that take place in front of your very eyes. It is like watching an accelerated film of a field of flowers blossoming. I have learnt some huge lessons from the sex workers movement at this conference.
Today’s plenary (Thursday) included an amazing multimedia presentation by Meena Saraswati Seshu of Sampada Grameen Mahila Sanstha (SANGRAM), who are promoting a rights centred programme in Western India.
SANGRAM works with sex workers, men who have sex with men, rural women living in poverty and young people. Sex workers have become involved as HIV educators. They go in the streets to teach truck drivers and the wider community about HIV, STD’s and how to use condoms. Stepping up as educators has helped them to go from social pariah to community leaders in the response to HIV.
Here is the SANGRAM Bill of Rights presented at the plenary:
- I have the right to be approached with humility and respect.
- People have a right to say yes or no to things that concern them.
- People have a right to reject harmful social norms.
- People have the right to stand up and change the balance of power.
- People have the right not to be rescued by outsiders who neither understand them nor respect them.
- People have the right to exist how they want to exist.
Save us from savours!
SILVIA PETRETTI … DAY THREE: HUMAN RIGHTS RALLY ‘RIGHTS HERE, RIGHTS NOW’…
TUESDAY at the International AIDS Conference has been dedicated, for me, once again to increase the voice and visibility of women and girls living with HIV.
But before I go into what I have done, let me share with you some great news that was announced this week: the results of a large trial on microbicides using the ARV Tenofivir.
A Microbicide is a woman controlled prevention method. It can be a gel or a cream, or even a ring, that when applied to the vagina stops HIV transmission, and sometimes can also prevent other STDs. If you have never heard about them, it is because we still don’t have an effective one.
This is why this research is so important. At this point, the trial reported effectiveness of around 39%, however it is probably higher, because adherence wasn’t very high in the long term, but this is a behavioural problem that hopefully can be addressed.
Personally it was a fantastic day, but a bit nerve wracking. In the afternoon I helped facilitate a workshop with Angelina, Sophie and Harriett, entitled: “Women Living with HIV Getting Involved with the Media. Why Bother?”
The workshop was held in the Women Networking Zone, an amazing space in the Global Village dedicated to foster debate and action about important issues for women and girls. The area is dominated by a washing line where bras and pants are hanging. For me this washing line highlights the intimate and personal aspect of women’s discussion and political involvement.
The workshop focused on understanding what we can gain by becoming more visible in the media and building skills, so women will feel more confident at giving interviews. Our aim was to get some of the women participating at the Vienna conference to be interviewed and publish their stories in a twin edition of Positively Women Magazine (in English) and DHIVA magazine (in German). In the end, six women stepped forward. How’s that for increasing the voice and visibility of HIV positive women!
The Women Networking Zone also hosted the launch of WeCare + , a newly established European and Central Asian network of women living with HIV.
That night I had the most nerve wracking and exhilarating time of my life. I was scheduled to lead the Human Rights Rally alongside Julio Montanier, the President of the International AIDS Society, Michel SIdibe Director of UNAIDS and Rolake Odetoyinbo, an amazing woman living with HIV from Nigeria. There were many more amazing activists and politicians leading the march, but unfortunately I do not remember everybody’s name.
Thousands of us marched through the historical centre of Vienna. Black, white, gay, sex workers, trans-gender, male, female and anything in between. We arrived in the beautiful Heldenplatz, at sunset, and we were shoved on stage to make our speeches before the singer and activist Annie Lennox performed.
Here is my speech:
I am Silvia, I am a woman living with HIV.
Today I would like to talk to others who like me share their bodies and their minds with HIV.
Here in Europe we are lucky enough to have access to treatment. But, we all know too well that it takes more then a handful of pills to live with HIV.
Yes the virus in our blood can now be undetectable, but stigma is almost everywhere.
Many of us live lives of fear and shame. Women like me even fear to start a relationship or feel shame about what people think of us if we have babies. We still fear to be rejected by our families and loved ones.
And it is not only fear. It is also reality. Many of us still experience discrimination even when going to see a family doctor or a dentist.
Those of us who are in prison can be bullied, and attacked, without protection from those who are responsible for them.
I could go on and on with the violence and lack of support which is still the daily reality for many of us.
Today I would like to ask you, you who are HIV positive like me: what is the answer to this? What part can we play?
Personally I made the choice in 2005 to be open about my status. It is one of the most powerful tools I have to challenge stigma and to stand up to any discrimination.
It is our birthright to be treated with dignity and respect, but it is our responsibility to demand that others fulfil this right.
Stigma will not end if we are invisible.
Women and girls what do we want?
Human Rights Now!
SILVIA PETRETTI … DAY TWO: LEADERSHIP BILL CLINTON AND ‘BUCKET LISTS’…
THE THEME of Monday, the first day of the conference, for me has been leadership. Maybe it is because I was facilitating a workshop on developing leadership skills for women living with HIV, with my comrades Angelina Namiba and Inviolata Mmbawavi.
During the session we tried to address the issue of openness. We asked participants: on a scale of one to ten. How open are you about your status? Where would you like to be? What needs to happen for you to move just one point on this scale?
After those questions we aimed to build a tree of action with post-its on a flip chart.
We asked participants:
What can you do personally to move forward and be more open as an HIV positive woman leader?
What can you do to move forward as a leader with the support from other people living with HIV?
What do you need to campaign for your government to do?
The aim of this exercise was to inspire a process of moving from the personal, to the collective to the political, and understand how all those elements are part of one continuum.
Those questions kept resonating in my head and manifested during the course of the day.
The plenary featured Vuyiseka Dubula the Director of Treatment Action Campaign, the organization instrumental in making HIV treatment affordable in developing countries: thanks to their tireless campaigning. She exemplified the power of openness.
A South African HIV positive woman from the township advocating for Positive Health Dignity and Prevention. This is an approach to prevention that acknowledges equal responsibility of negative and positive people in the transmission of HIV. People with HIV in this paradigm are not seen as mere vector of infection but as actors who can promote prevention, within a context where human rights are fully respected.
Bill Clinton also spoke at this first plenary. He may no longer be the President of the USA , but made a very strong call for political action and for continuing funding the epidemic. Clinton spoke for nearly an hour and it would be impossible for me to capture his incredible skills and charisma as a public speaker.
Among the many things he mentioned was the need for new fund raising strategies such as those adopted for Haiti earthquake, where a huge number of people gave small amounts, through text messages and the internet.
Obviously he had to speak quite a length on how it is crucial at this point in history, in which we have reached some tangible goals, not to retreat because of the economic crisis.
He made once again the point that the economic argument for promoting Public Global Health, needs to be made stronger: “Health Care is not just a right is an economic investment,” he said.
To conclude his speech he made a ‘bucket list’, things he would love to see happen before he kicks the bucket: “What I really care about is to see my grandchildren, an for all grandchildren of the world to grow to know their grandparents.” We have done good but we need to do better if we want those two generations to stay healthy and meet.
Bill and Vuyseka represented for me, some answers to the personal and political questions about leadership I had asked the participants of my session. Even though Clinton had been harshly criticized while he was in power, for doing very little for people with HIV.
My question on what we can do as people with HIV to move our leadership forward was addressed in the last session of the day: GIPA at the Grassroots Level and Beyond. GIPA means: Greater (and Meaningful has been subsequently added) Involvement of PLHIV.
It was historically born in the Denver Principles in 1983, and signed as a full declaration by 42 countries in 1994. GIPA means that PLHIV should be involved at all level of decision making in the response to the epidemic.
During this session many examples of collective action by PLHIV were exemplified. The most striking for me was the Ukrainian Network of PLHIV, one of the largest networks of PLHIV in the world with over 200.000 members, 100 of them are open about their status.
They are the principle recipients of the 6th round of funding from the Global Fund. In spite of the fact that most of its members are or have been drug users (a group not exactly famous for political action and expressing power) they have made ARV’s and drug substitution therapies a reality in their country.
It has been another amazing day here in Vienna. One of the most moving events has been that at the end of our session on leadership two women, one who had been positive for 17 years, and one for five, disclosed their status to the group. It was very emotional, but it was also an honour to witness those two women take their first step towards leadership.
DAY ONE – OPENING CEREMONY – STIGMA AND HIV PROSECUTIONS
IT IS 8:45am on a Sunday morning and I am sitting in a session room. The theme of the session is ‘Gender Gaps Stigma and Sex’. Sunday mornings don’t get much better then this, right!
Sophie, Rebecca and I have just arrived, but we are wasting no time. The conference has not even started yet, but Rebecca has her first presentation at an International AIDS Conference, so obviously Sophie and I want to be there to support her.
It is a great session that highlights the progress of the Stigma Index around the world. In a nutshell the Stigma Index is a global participatory research by and for HIV-positive people to measure levels of stigma. This session focuses on how stigma manifests itself in the lives of women in different countries.
It was clear from all the presentations that stigma affects women very heavily in the domestic domain and that it is strictly linked to gender violence. Now that I read my notes some of the statistics give me goosebumps. In Dominica Republic 34 per cent of women has been shoved or pushed by their partners in the last 12 months and 11 per cent has been attacked with a knife, a gun or another weapon.
But stigma doesn’t just express itself as violence in intimate relationships. It is chilling, but it is reported that health providers, and especially family planning clinics, are the ones who proactively discriminate against HIV-positive women.
In the Dominica Republic 30 per cent of women were advised to be sterilized after testing ( but only 17 per cent of men).
What is more horrific is that one of the condtions of provision of ARV’’s for women was sterilization. This was reported by 21 per cent of the women interviewed. The picture portrayed by the speaker from Bangladesh wasn’t much different. Shockingly 84 per cent of those interviewed reported that they had taken the decision of not having children.
We still do not have the results of Stigma Index research in high prevalence countries like Zimbabwe or South Africa, but they will probably add more lights on the links between HIV related stigma, gender violence and obstacles to access safe sexual health and reproductive services for women with HIV.
Finished this session we jumped in a taxi to take part in a satellite session on “Criminalization of HIV exposure and transmission: global extent, impact and way forward’. How is that for a Sunday lunch!
This was another heavy session featuring speakers from the UK, South Africa, Canada and UN. It was really valuable because it alerted me to the GNP+ Global Criminalization Scan which is attempting to report all the cases where PLHIV are prosecuted for criminal exposure and transmission in the world.
Up to now 600 prosecutions have been reported, but this probably is an underestimated. What is really scary is that in the past ten years more then 20 countries have introduced new laws to prosecute HIV transmission. Another important resource that was shared in this session was the booklet 10 Reasons Why Criminalization Harms Women, by the Athena Network.
There would be a lot more to say about this session, but I am running out of time and I need to go to the conference opening ceremony. If you are interested in the theme of criminalization please refer also to Edwin Bernard excellent blog Criminal HIV Transmission.
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.
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 per cent 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?
By for now… Hey, here is a picture of me before entering the conference centre this morning. I should probably take another one at the end of the conference, kind of before and after…Hopefully I will be able to pace myself and it will not look too bad.
Click here to read more blogs from Silvia
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