Nothing About Us Without Us

I firstly heard the expression ’‘Nothing about us without us” at a meeting of the International Community of Women Living with HIV (ICW), and if you go to the ICW Global website it still runs as a banner in capital letters on the home page . This expression ticks all the right boxes. It uses a ‘us’ language, stressing the importance of collective action, it expresses values of participation and inclusion which are fundamental to real democracy. It is about power being shared equally. It is about voice and control.

With a little bit of research, and a few mouse clicks, I discovered that this expression has its roots in the Disability Rights Movement (DRM). It was the title of a famous book by the disability activist James Charlton. The author first heard it from South African activists from the DRM, who claimed it came from activists in Eastern Europe. So it originates at the geographical margin of the usual locations of power. It is important to remember that the DRM set out to redefine disability as a social construct. Those activists pointed out that people with disability only had impairments, and it was society which was creating ‘disability’ by generating and maintaining barriers. For example disability is created when a bus doesn’t have a system that allows wheelchair access. However, ‘disability’ is constructed by more the physical barriers. The lives of people with disabilities have been limited not just by the architecture of buildings or lack of braille for those who do not see or sign language for the deaf.  The rights of those of us living with disabilities have been also violated by attitudes an preconceptions, by patronizing approaches and institutionalization.

It all sounds very familiar, doesn’t it? Obviously there are many affinities between the disability movement and the movement of people living with HIV. Most of the barriers we face are not imposed by the virus or physical limitations but by society. The enormous advances of medical care mean that many of us have, from a narrow medical point of view, healthy lives. However society’s attitudes and prejudices towards HIV still prevent many of us to live our lives fully, or at the same standard as anybody else. To give some examples, in the past few months I have been in support group were young beautiful women were isolated and terrified to disclose their status to anybody, and hadn’t had a relationship in years. I met a mother who had her children separate cutlery and plates because of the fear of HIV. A few weeks ago a colleague who is also openly living with HIV and has often spoken publicly about stigma, had eggs thrown at her. This is still happening in the UK in 2011. The virus may be undetectable in our blood, but stigma is around us: often reinforced by other social factors, such as poverty, gender inequality and racism. Reclaiming our voice, reclaiming our visibility, is part of our struggle.

‘Nothing about us without us’ has recently moved from being the slogan of those at the margin, fighting against oppression, to being integrated in the mainstream and absorbed in the language of those in power. The current UK government used   ‘Nothing about me, without me’ as the mantra of their plans to restructure the NHS. This time they stressed the individual, ‘Me’ instead then ‘Us’. After much debate the NHS reform bill was passed in parliament. The includes much more localized health boards in which patients, including people with HIV, and other stakeholders, such as healthcare providers, and elected decision makers, will have a place to influence how health services are delivered. So far so good, it is difficult to argue about’ shared decision making’, and there is a wealth of evidence that shows that when ‘patients’ are involved in all decisions and planning of their health the outcomes are better. However it implies that there is a level playing field for all people who access health care. Sadly the reality is that we live in a very unequal world, and I am doubtful that people with HIV, and especially those who are poor and isolated, will be able to seat on those decision making bodies.

At the IAS conference in Rome last July, Louise Binder, an HIV positive woman and advocate from Canada said:’ At school I learnt that if A equals B and B equals C then A equals C. We keep hearing Knowledge is Power. And I know that Power equals Money, so therefore Knowledge equals Money” Luisa’s point was: how can we know our rights and be empowered, without investment? This year Positively UK ran out of financial support for two incredibly successful project s which increased positive women’s knowledge and power to affect decisions. The project ‘From Baby to Pregnancy and Beyond’ , headed by Angelina Namiba, which trained positive women to be mentor mothers, and PozFem UK, the UK network of women with HIV, which skilled up positive women to become advocates were halted by a lack of funds. We are still continuing to run them on voluntary basis, but it is not enough and the work cannot grow. To be effective we need meetings with training, transport, childcare. Without future funding of such projects it is very unlikely that voices of women, will be heard, and therefore decision about us will not be made with us but by those who already have the biggest share of power.

To conclude I would like to propose a slight change of focus in the NHS mantra , I think that as community advocates we should continue using its original form : Nothing about US without US ‘ . We need to recognise the importance of our collective voice and collective action since historically, it is collective action that has propelled change. Hopefully This this conference, will play an important role in creating a collective voice and collective action.

The hard questions we need to ask ourselves as advocates are about who the ‘Us’ in ‘Nothing about Us without Us “ is. We need to question our relationships with each other. Who are we as a community of people living with HIV in the UK? Whose interests do we represent? We are a very divers e group and this is our richness as well as our weakness. Questions of how we can better represent our diverse communities and also how we can be accountable also belong to us at the grassroots as much as to those at the top.

This article was written for Positively Women Magazine as a comment on the UK conference for People living with HIV that took place in London in September 2011.

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?

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.

Returned to Risk

Last week I went to the launch of ‘Returned to Risk’ a report by the Human Rights Watch on the deportation of HIV-Positive migrants. It was held by the All Party Parliamentary Group on HIV and AIDS at the House of Common. The report highlighted the unfair treatment of HIV positive migrants, not only in the UK but all over the world.

In Saudi Arabia, for example,  all migrants are compulsory tested for HIV. If they are positive they are imprisoned and then deported without provision of care. This is done not only with HIV-positive people, but also with those infected with Hepatitis C, B or TB.

South Africa has also a really poor record of treating immigrants. Often migrant mine workers are deported without treatment if found HIV – positive or with TB. They are viewed as a disposable asset. Even if it is  against the young South African constitution. At the moment there is an estimated 3.000.000 Zimbabwean refugees in South Africa. 17.000 get deported back to Zimbabwe every month. One wonders how many of those forcefully sent back are positive, how many of those will die because of lack of access to medication?

At the meeting there was also a courageous  Malawian woman, Ivy,  currently living in the UK and expecting to be deported soon. Ivy is on third line HIV drugs, which are impossible to find in any developing country. She voiced her fear and anger at the prospect of being returned to a place where she will not find the medication she is on and will probably face illness and death. Ivu has been volunteering for a number of organizations and charities in the North West of England contributing to our communities for the past 6 years. The home office told her “Go and continue your good work in your country”.

The Human Right watch states in this report: ‘ The principle of non-refoulement, articulated in refugee and human rights law, establishes an absolute prohibition on the forced departure of a person to another state where there are substantial grounds for believing that the person would be in danger of being subject to torture or other cruel, inhuman or degrading treatment or punishment’

However the UK government is obviously not listening, because while it preaches its commitment to the Millenium Development Goal of Universal Access to HIV Treatment, it still doesn’t guarantee HIV treatment to failed asylum seekers in the UK, and deports people with HIV to countries where they will most certainly die because of the lack of appropriate medical care.

The African HIV Policy Network is running a campaign to stop the deportation of HIV positive migrants: Destination Unknown. You can sign the petition here.

It was great to see that discussion on this crucial issue for people living with HIV was brought up, especially in a site as the House of Common. However I was quite disappointed by the fact that those who attended the meeting were the usual people from the HIV sector. Once again we were preaching to the converted. If we want to move forward in securing access to HIV treatment for all in the UK we must work harder to reach those who are not already on our side. How can we do this?

HIV in Sicily Part III

My third story from Sicily has come to me through the world of blogging. It is the story of Niccky. In spite  a traumatic diagnosis and experiences of discrimination and mistreatment by  the Italian health system Niccky , through meeting other positive people on line finds a successful way of living with this illness.

 Niccky has a blog in Italian that has become a focal point of information and support for people living with HIV in my country and up to today has received more then 32,500: hits: http://sieropositiva.splinder.com/

 Here is Niccky’s inspiring story:

 “A young woman, on her 37th birthday receives the news: HIV POSITIVE.

 I go to A&E with a severely sore throat and high fever. They observe me, they ask me to sign a consent form for confidentiality, the papers to take an HIV test. I thought it was just a standard procedure…never would I have imagined that there were reasons for the diagnosis…

 They give me an anonymous room, with three beds. I take the central one. There is a private bathroom. It is the last room at the end of a long corridor. Once in a while someone enters to give me antibiotics, take blood, set up the drip with pain killers.  After two days I start to be able to drink half a glass of water, which was impossible a week ago. Only a few drops of water would burn my throat with a tearing pain. I couldn’t swallow food. But after two days even the light soup made with vegetable stock and small pasta seems one of the best gourmet dishes I have ever had.

 I kindly ask if anybody could tell me the reason for this horrible bout of flue. A kind nurse, the son of my parents’ neighbours, tells me to wait. They will give me the results of the HIV test at night.  With disbelief I start to understand that that’s the key: the HIV test. I had heard about AIDS in the ‘80s with the ads: “If you know it you avoid it”. But did I know it? No! So how could it choose me, this virus?

 To stop my thoughts going round my head like a crazy merry-go-round I start phoning around. A girlfriend reassures me that as usual in Sicily they get things wrong. I call my partner and I give him this input to terminate our relationship which  had been dragging for months like a weight. And I am left alone with my thoughts in that squalid room, until somebody calls me.

 A small woman in a white gown:

 “ Ms Niccky they are waiting for you at the ward…”

 “OK I am coming, straight away…here I am”

 Here we are, the damned results. Here is the news that can put my life, everything I have done, my studies, upside down. I ask the woman to help me because I have to drag the drip and was still feeling really weak…I couldn’t make it by myself. But she refuses “I am sorry Niccky, but how do I know you don’t have AIDS?”

 Bloody witch, she leaves me by myself. I struggle to get up and to drag the pole with the drip hanging. I am propelled by the anger and I walk through that corridor that seems endless.

 I knock at the door. He was there, waiting for me. I sit, looking for a comfortable position for the pole with the drip on my left arm. I look at him, he looks at me. We look at each other without speaking.

 The results.

 The doctor looks at me and scans inside my being. We stay looking at each other for a few minutes.

 “Excuse me…so?”

 “So what?”

 “The test… The results”

 “What did you think? That HIV would spare you?”

 HIV-spare, spare-HIV, HIV-AIDS, Nooooo! I can not believe it, this happened to me.

 “May I ask what kind of life do you lead?”

 Fucking bastard, I am a student and I work to support my studies. I work 10 hours a day in a pub. I take the bloody pole where the drip hangs and I get up, while my legs are shaking. My thoughts are fixed on one word. When? The doctor tells me I will be immediately discharged. There is nothing that can be done in the hospital. I will continue my cure at home. I should look for a consultant specialized in infective diseases.

 I walk back through the corridor, enter the room, pick up my things and go home. I find my family waiting, they are also waiting for the results, like when I used come back from University exams with a first, and we would celebrate. But this time there is nothing to celebrate. So?

 I am HIV positive! But you have to promise you will not cry. They can not keep their promise: a waling choir, holding back the sighs, the tears. Looking at them I promise myself I would never cry, or give up in front of my family. I am strong and I will win this battle that life has reserved for me.

 I am HIV+! I look back through the years and the only person I can think of is that vermin! That despicable man who made me fall in love and then locked me up in the house, because he was excessively jealous. That time in my life that I wanted to forget at any cost, and now comes back to me. It is like a pot of boiling water, I try to put a lid on it but it still overflows. Oh my God! Now I understand his words, what he was referring to…those enigmas, those excesses, there was always a hidden double meaning…But never had I understood the truth. Carefree times. Delirious times. Elusive moments. Bodies entangled under the sheets.

 I can not believe it! But yes, it is written on this piece of paper. HIV POSITIVE.

I don’t know what it means to be HIV positive. I think life will end after this damned written word: POSITIVE. But I can not afford to think why…I can not afford to go back to the past. Fortunately that relationship ended 10 years ago, and the HIV has only appeared now!

 Google.

 I look up those three shaky letters: H  I  V .

 Human Immunodeficiency Virus, from the English language. It is the virus that causes the Acquired Immunodeficiency Syndrome.  It is subdivided in two branches HIV-1 and HIV-2. The firs one is found mainly in Europe, America, and central Africa. HIV-2 is instead found in Africa. But who cares? How long will I live? Will I suffer? Will I make it? So how long have I got to live?

 I had 4 Elisa tests: one in hospital, 2 in private clinics, the last one in the hospital of another city. All with the same result. On one hand I could understand that there was the possibility that I really was HIV positive , on the other hand I only wanted to wake up from a bad dream, I wanted to believe it wasn’t true. At the fourth one I said: that’s it. I am HIV+ and I have to get out of this anguish.

 First stop: information on HIV, second stop to talk and to confront myself with other people living with HIV.

 Internet was like a father I looked for anything in it. I spent my first New Year Eve on line, between truth and misinformation that internet offers.

 Second stop I meet a fantastic person, a woman who had been HIV positive for 20 years. Manuela is 47, her face is emaciated, but she talks to me calmly. She listens to me. She talks freely about HIV. She encourages me and gives me practical suggestions on how to deal with things like Lipodystrophy , which can be brought up by the therapy, which I am already on. She tells me about the Metabolic clinic in Modena, and to deal with the long waiting list, she helps me making a booking immediately. I feel full of information on how to deal with the virus that is inside me.

 29^th January

 The therapy is given to me accompanied by the sound of the consultant’s fists on the desk. He is telling me with a firm tone that I should wait. According to the guidelines my CD4 should be around 200 to start therapy and I still am at 250. I don’t give  a shit about the numbers. I want to stop this virus that is replicating inside me. Nothing is better then to start the therapy. The therapy is not a big obstacle. Sure I am a little scared of the side effects, but the will to feel better straight away is stronger. The consultant scribbles on a series of documents, including an exemption of charges. In Italy your Antiretrovirals are free. You go to hospital and they give them to you.

 On a piece of paper is written: Combivir twice a day, Susitiva once a day. It is only 3 pills. Nothing compared to the 14/17 tablets people took in the ‘90s, a huge step forward.

 The drugs spend one week on the bedside table. They look at me, I look at them, I scan them. I read the paper with the  instructions and possible side effects several times.

 I start on them the 29^th of January. One month after discovering I was HIV positive. The 29^th of January is the day my brother was born and died, a way to put myself in the hands of a loved one.

 After taking the first morning pill I wait full of anguish for the side effects, but nothing happens. The evening pill, Sustiva, throws me off centre completely and screws up my routine. I am really irritated. I need to go to bed really early to counteract the daze the pill puts me in.

 After 7 months

 I am an endless mine of information on HIV. Thanks to the therapy I feel great, even after the first month. I feel a new person.

 Life knows how to wait for the best moment to screw you up, but the mess life offered me is a gift that allows me to say yes to change.  Objectively nothing has changed about my physical person, but this experience has thought me how to grow, how to accept everything that I used to undervalue, to take for granted.

 While I was outside of Sicily I manage to see a doctor who changes the Sustiva to something that doesn’t give me side effects. Sometimes I have bouts of Herpes, it comes and goes. But apart from this everything goes well. So I start my blog… “

Update on Deportation of Lady X

We will not be able to stop the deportation of Lady X – this is how I decided to call the lady that was ‘snatched’ from Northern Ireland to be taken to a detention centres first in Scotland, then in Manchester and was  moved yesterday to Yarlswood, in Bedfordshire.

 There is nothing I, or any of us, can do to stop it. Her flight back to Malawi is booked for tonight. I spoke to her on the phone yesterday. I had to gather the strength to call her. I just couldn’t face saying: there is nothing that can be done. But anyway, I though it is better that she goes knowing that there are people here who care about what is happening to her. She sounded OK on the phone. She told me that she has a 2 month supply of medication and the HIV organization which supported her in Northern Ireland will send her another three months. Obviously she was concerned about what would happen afterwards. She is on second line treatment which is not available in Malawi, one of the world poorest countries.

What will happen when her medication runs out? What will she do in a country she left over six year ago? How will she find a home, a job, medical and psychological support? What can I – and you – do about it?

HIV and Deportation

I have received an alarmed email from PozFem members from Northern Ireland.

A lady from their group who had been living in Northern Ireland for over six years was taken to detention centre and is going to be deported back to Malawi, were she has nobody, on Wendsday.

Last Thursday she went to the police to sign as she does as part of her process of applying for asylum. She was taken directly from the police station to a boat who took her to Scotland. She didn’t have anything on her, not a toothbrush, or a change of clothes and worst of all, not even her medication. Her mobile phone soon ran out of batter and she didn’t have any access to her friends any more, all her numbers were in the phone.

From Scotland she was taken to Manchester and from Manchester she will be taken to Yarlswood in Bredforshire. She has a flight booked to be taken back to Malawi on Wendsday. Somehow the PozFem members in Ireland have managed to keep in contact with her. Thank to them she now has ARVs for a month and some clothes. But obviously she is really distressed because she doesn’t have anybody left in Malawi. Through ICW we are trying to get contacts there that can help her.

The trauma of her deportation is deep.  We know from the experiences of others who have gone through similar circumstances, such as Jewish women during the holocaust for example, that being taken suddenly for deportation and detention  to a place where most likely one can expect to face illness, hardship and death,will have deep repercussions on one’s mental and physical health for a long time.

I am ashamed that a country like the UK can treat a person who is looking for safety here with such inhumanity.

If you have any idea on how we can highlight the inhumane treatment of HIV positive Asylum Seekers or how we can help this lady please contact me.

Do What Africans Do or Life as an Immigrant with HIV

I am on holiday at last! And somewhere very very hot: Miami. It makes for a happy and relaxed me- at last!

I had a busy time before leaving. Last week-end I was in Bath where I facilitated the PozFem South West meeting. The aim of the meeting was to introduce PozFem to the women in the South West of the UK as well as get a picture of the experience of Stigma in the region.

We were in a lovely place just outside Bath: the Ammerdown Centre.  It rained most of the time – as usual for an English summer-  so we couldn’t really enjoy country walks, but we had a lot of time to bond and talk to each other.

The group wasn’t very big, we were 11. But Wales, Cornwall and Devon were represented. As well as Zambia, Zimbabwe and Kenya.

One of the  participants , I will call her A,  when we arrived looked very tense. She set at the margin of the circle of chairs and didn’t speak much. In the afternoon we completed the questionnaire for the Stigma Index. When we finished we opened the discussion. I think it is always important to have time to talk about what came up while completing the Index because it can be emotionally really straining.

A said: ‘ Living in this country as an HIV+ immigrant has robbed me of all my dignity. I came to the UK in 2003. In my country I was a valued member of my community. I worked as a teacher. However, since I became HIV+ two thirds of what I earned went into buying the medications I was on. The money left wasn’t enough to live on. I was really struggling. I thought that if I came to the UK I could work, earn a better wage, pay for my medication and have enough to live.

The Home Office took my passport in 2003. Since then I have been going to sign at a police station every month. Last year, once,  I went to the Police station and they said that my case had been refused and I had to be deported. They kept  me in a  cell at the police station for 5 days. I couldn’t wash, change clothes, or even brush my teeth. I didn’t even have my medication. I called my local HIV charity, but they said that nobody could come and help me – they didn’t have time. Finally another member of PozFem managed to bring me clothes and my medications. I was moved to a detention center. They said I would be put on an plane and sent back to my country. I asked to see the detention center’s doctor. I explained to him my situation, that I was HIV+ and if he could please arrange for me to have a couple of months supply of HIV medications so that I would have enough time to find out where and how to get ARVs in my country.
He said: ‘No, it is not possible.’
I asked him: ‘What am going to do then?’
‘Do what Africans do’  Those were his final words.

My lawyer managed to get me out of the detention centre and bring my case to appeal.  I continued waiting. I have waited for 6 years. I am fed up. I had to change ARVs and the combination I am on is not  available in my country. But I am so fed up, I just want to go back. I asked the Home Office to give me back my passport. I want to go. But  I am still waiting for my passport…’
A ‘s story stirred so many feelings within us. We were moved, sad, but above all really angry at the inhumane way she had been treated.  Almost as she was a criminal. But her only ‘Crime’ is to have been born in a poor country where HIV is still a death sentence for most people.

We realized once again that it is so important that us, PozFem members,  let others – and especially those in power-  know what is happening to people like A.

By the  end of our meeting A looked more relaxed. One of my best memories from the two days, was walking in the breakfast room  and see A talking animately to other members and burst out laughing.

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/