Life in Prison

A young woman is sitting in front of me in the health adviser’s office in a UK prison. The office would look like any consultation room at your GP’s, if it wasn’t for the bars on the windows, and the recurrent sound of keys, and doors being locked in the background. I will call this woman ‘Y’. I have to be very careful about what I disclose about her, even in the pages of this magazine. If accidently other inmates or prison officers knew her identity and HIV status, she could risk bullying, insults, ignorant remarks, refusal of sharing everyday objects such as cutlery and cups, and isolation. Inside prison, HIV is a secret that needs to be kept at any cost.

 ‘Y’ is in for a violent crime she has committed to help her boyfriend when she was still a teenager. She is only 21 years old and pregnant. ‘Y’ tells me her story, without searching for pity, just recounting the events that have happened in her life. Born in an African country at war, she became a refugee when still a small child. ‘Y’ and her family – her mother and other siblings – escaped the war, first to refugee camps in neighbouring countries, later on to northern Europe – the safest option. She has moved through several countries before settling in the UK.

 If the horrors of war and exile weren’t enough, ‘Y’ was raped when she was eight, by a family member. That’s how she contracted HIV. It is not a surprise that her mental health is a big issue. The prison is very concerned about her. There will be meetings among psychologists, social workers, doctors and prison staff to decide if ‘Y’ is mentally and emotionally fit enough to have a baby.

 While I talk to her, I get the impression that in spite of all she has been through there is force, clarity, and strength in this young woman. But her life and the life of her baby are – for now – in the hands of the ‘experts’, the ones with power.

 When I leave prison and I go back to my home, it is difficult to leave ‘Y’ behind. I keep thinking about her. I feel sad, angry, and powerless. I can’t help asking myself: ‘Is prison really the best place for Y? Will she get any better in such an environment? Will she really have the possibility of move away from her past life and grow into her full potential? What will happen to her baby?’

 ’Y’s story is dramatic, but it is not that unusual. So many of the women I see in prison have tragic pasts; addiction, abuse – including sexual abuse – neglect, and poverty are recurrent themes. I believe many of them suffer from mental health problems. This is just my observation as an outreach worker who has visited HIV positive women in a UK prison for the past eight years.

 What do the experts say?

 Well not much. One of the biggest problems about the situation of women in prison is that it is severely under-researched. For ‘security reasons’, everything about prison is very guarded. Prison is very hard for any body, but the added burden and terrible anxiety of having to guard the secret of HIV makes it a lot harder.

 What is known about women in prison in the UK, at present, is that they are a fast-growing population. According to the Prison Reform Trust Report of 2006 in England and Wales, the number of women has increased by more of 200% in the past 10 years compared to a 50% 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, (more often then male prisoners). Their imprisonment and separation from the children can cause major psychological traumas, which are very difficult for both the mother and the children. This has grave repercussion for all of us in the communities were those children live. If they are the head of their 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.

 The Prison Reform Trust provides more chilling statistics on the circumstances of women in Prison.

• More than half of women in UK prisons say that they have suffered domestic violence and one in three has experienced sexual abuse.
• The educational achievement of women prisoners is lower than for male prisoners. 74% left school at 16 or before. Only 39% have any qualifications at all, compared to 82% of the general population. 41% of women prisoners have not worked in the past five years.
•  70% of women prisoners have two or more diagnosed mental health issues.
• 66% of women prisoners are mothers, and each year it is estimated that more than 17,700 children are separated form their mothers by imprisonment
• Of all women who are sent to prison, 37% say that they have attempted suicide at some time during their life.
• Rates of self-harm or injury in women’s prisons rose 48% in recorded incidents between 2003 and 2007. In 2006, women accounted of 11, 503 or 49% of total recorded incidents of self-harm, even though they form only around 6% of the prison population.
•  66% of sentenced women in prison say they were either drug dependent or drinking to hazardous levels before custody. A University of Oxford report on the health of 500 women prisoners found that 58% of women had used drugs daily in the six months before prison and 75% of women prisoners had used illegal drugs during that six month period.
•  One in four women in prison has spent time in local authority care as child.
•  The majority of sentenced female prisoner are held for non-violent offences. At the end of March 2008, the largest group (28%) was held for drug offences.
• More women were sent to prison in 2006 for theft and handling stolen goods than any other crime. They account for almost a third (31%) of all women sentenced to immediate custody.

 If you add to this bleak picture the hurdle of living with HIV, and often of being diagnosed, while in prison, it is clear that there is an extreme urgency for a radical prison reform that takes into account gender equity and the right to health of women prisoners.

 Meanwhile women like ‘Y’ have to carry on the best they can with the support available. Fortunately ‘Y’ was allowed to have her baby in prison. In spite of the misery of being a first time mother behind bars, she has bonded with the baby and she seems as happy as she can be. Maybe also thanks to the fact that she wasn’t totally isolated, but she had the chance to talk about her feelings around HIV during Positively Women’s visits. Soon Y and her baby will come out of prison, there is still so much uncertainty about her future, and she is particularly worried that it will be hard for her to get a job because of her criminal record and her HIV status. However Positively Women will continue to support her and hopefully this will be a happy ending story. This is quite rare when you come out of prison.

 For more information: www.womeninprison.org.uk/

What Does Stigma Mean to You?

1. Labelling – dirty

2. Name calling – Prostitute

3. Looked down upon

4. Discriminated against

5. Disapproving

6. Shame

7. Indifference

8. Blame culture

9. Unworthy

10. Held-back

11. Anger

12. Taboo

13. Judgemental

14. Second-class citizen

15. Disclosure

16. Harassment

17. Fearful-ostracised

18. Stress

19. Isolation

20. Anxiety

21. Unfair treatment

22. Seen last during appointments

23. Rejection

24. Lack of confidence

25. Bullied-victimised

26. Ongoing suffering

27. Powerlessness-no voice

28. Marginalised-invisible

29. Worthless

30. Dehumanised-sub-human

31. Unloved

From POZFEM-UK flipcharts. Northern Meeting, Newcastle 6-7 June 2009

Edwin Cameron on Stigma

Edwin Cameron is one of my heroes. He is a judge at the Supreme Court in  South Africa,  openly gay and living with HIV. Edwin Cameron is probably the only person openly living with HIV in a high profile public position in Africa (and as far as I know the world).

In his autobiography, ‘Witness to AIDS’, he speaks eloquently about stigma.  Here is an excerpt:

“…Why is there such stigma? Stigma often accompanies those diseases that are seen as incurable, deadly, transmissible and disfiguring. But it seems to mark most severely those conditions when the affected person is seen as responsible for getting the disease.

AIDS fits all those categories. As the new drugs become increasingly available, the stigma from incurability will surely wane. [...] As more and more people are diagnosed and speak out, the stigma from silence will also wane.

But there remains something even harder to grapple with. The most inaccessible, the most intractable element of stigma is the disfiguring sense of shame  that emanates from the internal world of some with HIV or AIDS. This sense colludes with external stigma, overcoming efforts to deal with the disease rationally, keeping those with AIDS or HIV in involuntary self-imposed isolation, casting a pall of contamination and silence over the disease.

What causes this shame? I don’t know. Without special expertise in behaviorism, psychology or the human soul, I can only cast within myself for some inkling of the truth. And my conjecture, neither novel, nor dramatically revealing, is that it is to do with HIV and sex. HIV is a sexually transmitted infection. Perhaps other sexually transmitted infections leave similar feelings. I do not know, since (perhaps ironically) the only one I have ever had is HIV. That has been my fortune, where life’s forces have taken me.

Why does sex leave shame? Perhaps it lies in the embarrassment that arises from exposure of what one thought was utterly private and intimate. Perhaps to admit to having a sexually transmitted infection is to be caught out in an act of sexual intimacy, with all its attendant embarrassment – and shame. Pregnancy, too is a sexually transmitted condition. Women made to wear the scarlet letter in the darker days of sexual oppression might have experienced a comparable sense of shame. But pregnancy is a condition, not an infection. A pregnancy, even one unwanted, even one deemed illicit, holds life and hope and the possibility of growth and fullness. Infection with HIV offers none.

Certainly for me some of the internal shame seemed to come from the fact that my HIV came from a sexual act. In my case it was male to male penetrative sex. When my doctor told me that I had HIV that Friday afternoon in 1986, I was a gay man recently come out. Though always in my practice and social and political life, I expressed myself as resolutely open and proudly gay, perhaps my sense of shame derived from the fact that my virus was homosexually transmitted. Or so I thought.

But this was wrong. As the African epidemic took hold and spread, it became clear that I was not alone. For millions of heterosexuals Africans with AIDS or HIV it is no different. Their shame about HIV is as intense. Even women who say that they married as virgins and remained celibate within their marriages express shame at their condition, and experience the difficulty of speaking out about having HIV.

Perhaps therefore the internal stigma is connected with the merely sexual – not homo- or heterosexual. Perhaps in our deepest selves we feel that a sexually transmitted infection shows other that we have been ‘caught out’.  The infection leaves a mark, a stain, a print, linking us back to an act so private, so intimate, so sacrosanct, so emotionally and spiritually unguarded – the moment of sexual coupling – that its external manifestation in an illness, its exposure to the world, is deeply embarrassing and therefore shameful.

Perhaps we still regard ourselves as guilty of some sort of sin of sexual contamination, as marked by moral inferiority, by an uncleanness or exposure of body, and hence a sense of moral inferiority. Some religious moralists inflame all this. They forget that AIDS is a disease. We all do.

Present Stigma

I am just back from Newcastle where we held the  PozFem Northern meeting. We were more then 20 women,  most from the North of England, but also from Scotland and Northern Ireland.

We spent two days talking about our experiences of stigma. After completing the Stigma Index questionnaires we discussed in small groups our concrete experiences.  As soon as we started a young woman who lives in Manchester took out a mobile phone and showed a picture. It was her car with written in large red letters HIV…AIDS. Somebody in her neighborhood did it. She woke up one morning and saw it when she looked out of the window. Her children were with her and were asking questions she would have rather not answered. She told us of her effort not to show her emotions, her anger, to her children,  so as to not  upset them. Luckily it was water based paint and she was able to wash it off. After a few days she looked out of the window and the writing on the car was back. This time it was a glass based indelible white paint. The police have not been able to do anything about it. Even if the young woman has suspicions on who did it, they need an eye witness to prosecute. All the  neighbors saw the car and the news spread rapidly around. Some sided with her, some against her: they didn’t want somebody with HIV living next door. The tension and the fear grew. The young woman and her two small children had to move house. This has happened this year in the UK. It is is only one of the horrific stories I have heard in Newcastle this weekend.

The Stigma Index

I spent the past weekend in London facilitating with Fiona from ICW the PozFem  Eastern Meeting.

Once I got over the fact that I was working during the most sunny weekend of the year (and knowing England it may as well be the last!) it was a really intense and moving couple of days. We were only a small group, around 15 women. A few of us from London and the rest from places around London like Southend and Brighton. We were an amazing mix of nationalities from South Africa to Romania via Kenya, Zimbabwe, Spain and more countries that I can remember.

One of the best part of the meeting was spent taking part in the People Living With HIV Stigma Index. This is a fantastic project which will be run globally. It is set to measure in an ‘objective’ way levels of stigma in several countries. The UK is one of the first countries to take part.

One of the most exciting things about the Stigma Index is that the researchers themselves are HIV postive people who have been trained to carry out the interviews. In this way we hope that the whole process of gathering information and sharing experiences of stigma will be an empowering one. This is extremely important because talking about stigma is so painful and difficult.

Stigma manifests itself in subtle ways. So often people with HIV are still portrayed as dangerous, vectors of infections, dirty, deviant and contaminated. There is this image in the collective mind that we are a threat. I believe that the global trend of criminalizing HIV transmission is a concrete manifestation of those negative attitudes regarding HIV. For many HIV is not just a virus: HIV is a crime, HIV is a moral judgment.

I really hope that by creating  more solid evidence around stigma we will be on the right path to eliminate it.

After we completed the questionnaire we spent time discussing how stigma had affected us. We felt that the questionnaire maybe couldn’t capture the longer lasting scars of having experienced stigma. Once that sense of shame and worthlessness is installed in you, it takes a long time to heal and get the strength and the courage to really believe in ourselves. How do you measure internalized stigma and the destruction it brings to our lives?

I was very tired last night…Not just for having worked for 7 days without a break, but also because of the intensity of the emotions shared. However, I was also hopeful that what us, a small group of women, had done by shutting ourselves in a room during a sunny weekend, will make a difference.

At the end of yesterday, when  we were doing our closing round, commenting on the the lessons we  learnt, one of the women said ‘ I take away…that if Silvia can…so can I!’ It is words like this that help me overcoming me the sadness and sense of worthlessness that I have been fighting within me for so long. I have learnt that the support and feedback we give to each other are one of the greatest tool we have to overcome internalized stigma, and the chronic low self-esteem that goes with it.