Democracy Lessons

PozFem Spring meeting was held in London from the 15th to the 19th of April. We were 25 HIV+ women from England, Wales and Scotland. The women from Ireland had been prevented from coming by the Icelandic volcanic ash.

I have rarely seen such a diverse bunch of women: young, old, from different continents, many with stories of escaping violence, in their homes, or countries. Coming to Europe to look for protection. Some still waiting, from the Home Office for what we just call “status”. Immigration status. Leave to remain in the UK. Some of us had experienced prison, drugs, mental institutions. Some of us ordinary mothers and wives. What we have in common is HIV and the willingness to do something about it.

On Thursday evening our first members started to arrive. Many were tired because they had worked all week and came straight from the office. The train journeys were often several hours.

In spite of the tiredness on Friday morning everybody was punctual. Bright eyes, and excitement were in the air. The reason why we met on London was that on the past meeting we had decided that if we want to change perceptions of HIV and we want to fight to keep alive the services that support us, we need to learn more about how we can influence the political system.

So our plan for the day was to visit the House of Commons and participate to a training on keeping HIV on the political agenda. The training was offered by Veronica Oakeshott from the All Parties Parliamentary Group on HIV and AIDS.

Veronica highlighted how election time is a sensitive time for lobbying. Obviously candidates want to be elected so we can ask them about their commitment to HIV if they want our vote. However MPs are also very busy at this time so it may be difficult to get a response. Veronica also showed us how to prepare a letter to be sent to our MP, whoever she/he will be, as soon as they are elected to ask them to do something about HIV.

Some of the key points to remember, when you write to your MP are:

MPs are our employees, we have elected them and are they paid with our taxes. They have a duty to read our letters, give us a reply and hopefully take action. If we don’t get a reply after a few weeks we should call their offices and follow-up.

The more letters they receive on an issue the more likely they are to do something about it. So you could ask your, friends and family members who live in your same area to also write a similar letter to yours.

Resist the temptation to rant. It is difficult, especially after the expenses scandal.

Keep it brief and to the point.

State what you would like them to do for you (for example continue support women centred HIV services, or provide ARVs to all immigrants, regardless of immigration status).

You may want to suggest your MP to meet with you, or with a group of women from the support group you belong to.

You can also invite your MP to join the All Parliamentary Group on HIV and AIDS, where they can learn more on HIV and its policy implications.

At the end of the meeting all of us had produced a letter to send to our MPs. And we have all promised to send it.

If you would like to do the same, but don’t know who your MP is you can find out here.

If you would like some inspiration for your letter you can have a look at mine here.

The PozFem members came out of the 2 hours training with even brighter eyes. Clutching the handwritten letters in their hands. They all promised to send me a copy once they have typed them so I can upload them on the PozFem website as a resource for other women living with HIV who want to write to their MPs.

Hopefully you will also write one to yours.

In Memoriam of Z

This is the most difficult article I have ever had to write. I can not use the name of the person. I can not say where she was from. Her family has given me the permission to write an obituary about her as long as she can not be identified. When I need to hide the identity of people I write about I often use letters of the alphabet. In this case I will use Z: the last letter of the alphabet, to reflect how we, as a society, had left her last for most of her short life.

I first met Z during one of my first outreach visits to prison when I first started working at Positively Women nine years ago. She was then a blond and bubbly twenty something, who, already, had been diagnosed with HIV and HCV for a few years. She had grown up in one of the poorest parts of the UK, in a family already deeply affected by drugs and alcohol addiction and sexual abuse: an unoriginal tale for a woman who ends up in prison.

I saw Z frequently for many years. She had a voracious drug addiction and committed petty crimes to feed it. Z was in and out of prison, usually staying for a few weeks, sometimes months. I met her twice on her release at the prison gates to give her support in her struggle to be assigned accommodation from the homeless unit. Z had a learning disability and could hardly read or write, so she needed a lot of help. At the homeless unit, we spent our time queuing up, filling forms, begging, and quarrelling with housing officers. I remember I would become discouraged easily, but Z was extremely tenacious and resourceful and would continue insisting when I was ready to give up. Obviously it was her accommodation that was at stake, but it gave me a glimpse of a side of her which was very different from that of a powerless, desperate, drug addict. There was a real force in her. How would you survive on the streets for years and feed a very expensive addiction if you weren’t tough, ingenious, and able to use any meagre opportunity you are presented with?

Both times we went to the homeless unit she was assigned some form of accommodation. We were so excited we had succeeded in getting a place. The first time we travelled all the way to the northern outskirts of London by bus, carrying two bin bags with Z’s belongings. When we arrived the place was a cold and squalid studio flat, without furniture, just a bed without sheets or a duvet. I felt sad when I left her, as if I was abandoning her. The health adviser had given her a piece of paper with a written plan for the whole week: names and numbers for Detox day-clinic, probation, hospital, Positively Women etc. I promised to contact her the following day, but I couldn’t find her, her mobile phone went directly to answer phone. I saw her a few weeks later, in prison. She told me that she had gone out to get fish and chips, but she had become disoriented and couldn’t find her way back. I didn’t blame her. I wouldn’t have wanted to find my way back to that bare and lonely place myself.

The second time Z got accommodation from the homeless unit was a hostel infested with other addicts. That time too when I left her I felt totally hopeless. The accommodation and support on offer was totally inadequate to support her. This meant that she couldn’t properly take care of her health. It felt like her life was not worth much.

In the last couple of years Z changed. Her hair had become darker, her natural shade, her cheeks sank in, she was aging quickly. Every time she was arrested she arrived, drawn, skinny with CD4 count always not over double digit. Her bubbly side quietened. When I saw her in prison I felt a sense of relief. I knew that it was the only time she would have medication, food and a secure roof on her head. After a few weeks, she would start looking better and putting weight on. The last Christmas of her life she spent it in prison. She told me that she committed a crime so she could be arrested, and be safe behind bars. She couldn’t bare spending Christmas in the streets. Z had changed a lot, she was more thoughtful, she really wanted to quit drugs and had made contact with her teenage daughter, she hadn’t seen her since she was a baby, and she was being looked after by other relatives. Z was dreaming of cleaning up and visiting her.

Z was offered a place in a rehab in a rural area. But it didn’t work, somehow her status was disclosed and she experienced humiliating discrimination. Her plates and cutlery were separated and people avoided her for fear of infection. She ran away, back to the streets of London and I saw her a few weeks afterwards in prison.

Z died of an overdose, on her own, in a homeless hostel, a year ago.

The Changing Face of Human Rights

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

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

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

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

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

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

Stop the Spread

While in was in Miami I did something quite unusual. I took the bus.

Most of my friends who live there had never taken one. Everybody gets around the vast city by car. The streets are full of cars that host only one person.The traffic is bad, the bus stops at every block. A journey that would usually take 25 minutes by car took me over 1 hour and half. Some of my friends warned me it could be dangerous. But most of the people on the bus were Hispanic pensioners. The only dangerous thing I could forecast was that  one of those elders could slip and break a fragile bone. But luckly I was able to reach South Beach without anybody getting hurt.

On the bus there was an advert for HIV testing. It had the words ‘Negative’ and ‘Positive’ next to a ticking box. The caption said ‘One in 5 people with HIV doesn’t know they are infected: Stop The Spread, Get Tested.’  I found it quite puzzling that the advert didn’t focus on the fact that HIV is a treatable illness, and that people can have access to free medication. It seemed  very odd that the advertisers thought it was sufficient to provide the altruistic motivation of “stopping the spread’, which essentially assumes that people would want to know that they have HIV, and take on the burden of living with this heavily stigmatized condition, purely in order to protect others. I  don’t think it makes sense, especially in a country like the USA, so driven by individualistic values and motivations.

On the other hand there  is quite a lot of evidence that good prevention and  testing campaigns should go hand in hand with anti-stigma campaigns as well as providing information on  access to free care and treatment. You can read more on this debate on this blog by Daniel Reeders.

On a personal level the depths of stigma have just slapped me on my face one more time. I have disclosed my HIV status, after a lot of difficulties to a person I was hoping of having a relationship with. Yes it is still very hard also for me. The response was hard. Part of the discussion we had was  about testing, since this person (to my disbielief) had never taken a test. This is a fairly educated, and worldly person, with a basic understanding of how ARVs work.

When I asked why there was so much fear of taking The Test the reply was : “If I knew I had HIV I would kill myself”

When we mention HIV we mention so much more then the virus. The sense of tragedy those three letters bring is beyond all rationality. That is why anti-stigma campaigns as well as free access to medications and support need to be at the core of getting people tested.