More than just a simple protest against the cuts, HIV Blind Date platformed the lived experiences of three people – Laura, Duncan and Clare – in order to address both the root causes and the deeper implications of government policy. Central to the event was the urgent need to acknowledge HIV as a feminist issue, which is why two out of the three contestants were women, although Clare lives with Hep C, not HIV. Culturally, we conceptualise HIV as only affecting gay men, but more women than men are HIV+ worldwide, and women are the second highest demographic living with HIV in the UK. Lack of awareness means that women tend to be diagnosed much later than men, usually when they are already seriously ill; Of the 35,000 women living with HIV in the UK, 29 per cent of them are unaware of their positive status. “HIV and gender inequality are so interwoven,” says Silvia Petretti, Deputy CEO of Positively UK, an organisation that provides peer-led support to people living with HIV. “Unless women have more economic, political and social power, they cannot protect themselves from acquiring HIV, and when they are living with HIV, there are many more challenges.”
So often, people living with HIV and Hep C are stigmatised in our society; treated as passive recipients of resources, or silenced and invisibilised altogether. HIV Blind Date was about people coming together to speak openly, and most importantly joyfully, about their lives. We were all packed into the basement of The Glory pub in Haggerston, and the slightly sweaty closeness of the whole evening created intimacy. When Laura, Duncan, and Clare began to speak, you could feel the effort and bravery it took for them to share sometimes painful experiences, but you could also feel their relief. No subject was off-limits; When Duncan held back from mentioning sex directly, someone yelled out, “Say it! Say it!” from the crowd. For Dan Glass, who co-organised the night and played Cilla, it was particularly important that sex and pleasure were celebrated: “That’s why we used the Blind Date format – living with HIV and Hep C you think, ‘Oh, I’ll never get a lover again. No one will want to touch me, I’m useless, I’m damaged goods.’ But we should be talking about sex, and loving sex.” HIV Blind Date is part of a wave of creative activism that tackles the shame- culture around these diseases: “It’s about becoming fully alive”, says Glass, “loneliness and shame is a killer. We want to bring beauty and strength and joy to people’s struggle.”
After the show, Laura and Clare spoke to Ladybeard in more depth about living with HIV and Hep C, how the cuts are affecting their lives, and the positive things about being positive.
“I’m in the system, but I’m not, because there is no provision for me. But I’m here.”
Laura* radiates warmth and energy. Onstage she is smiling and open; her distinctive, sing-song voice lilting upwards as she finishes her sentences. She was diagnosed with HIV in the UK in 2012 when she was already very ill. Due to a mix-up with her blood-sample, for months the doctors told her that she was HIV negative. The average CD4 count is 500-1500; when she was finally correctly diagnosed, hers was only 42. Laura is originally from West Africa, and her visa expired shortly after her diagnosis. She can’t travel back to her country because they do not have the correct medication for her there, but her immigration status – which is currently pending – means that legally, she cannot work in the UK, and she has no recourse to public funds.
Tell me what the immigration system is like for somebody like you – somebody who’s positive, who is a migrant, who is now living here?
When I was diagnosed my HIV was very advanced, and resistant to certain medication. So now, I need to go back to my country, but my country doesn’t have the medication that I need. Here, I’m not an asylum seeker, so I can’t access anything. No benefits, nothing. We are the ones who are in the system – but we’re just hanging. I try so hard just to be OK, but sometimes the system works so much against you! Sometimes I feel so sad. All I’m trying to do is just stay alive – that’s all. I don’t know how they think I survive.
So how do you survive?
It’s been three years. I do what I have to do. I had to stay with a man who was being violent – not physically, but emotionally violent. I thought: ‘If I leave, where do I go? What do I do? I have to attend support groups. I need to go to the clinic. I need to eat. I need to take my medication with food. But with what money?’
My family supports me a little – but for how long? I can’t say what I do in this interview. I’m a graduate, I’ve got a master’s degree and skills that I cannot use.
What did you used to work as?
My Masters is in Business Management. Before my visa expired I was working in learning disability, in supported living. When I was diagnosed I was hospitalised for two weeks because I had a life threatening kind of pneumonia. My Dad has got cancer, he was in the UK at the time, and I knew that if he found out that I had HIV it would kill him. So two weeks after I got out of hospital I went back to work. Even the doctor said that I was crazy, but it was my way of dealing with it. I needed to think that everything was OK. It’s not something I can explain.
When I was out, for three months or more, I could hardly walk. I used to have to take time out to sit down. I would watch people walking and think, ‘If only I could walk like that. If only I could walk’. That was how I went back to work. But I’m that kind of person; I don’t give up.
If you could, would you want to go back to your country?
I have two lives, you see, I have my life with HIV, which is here, and then I have my life with no HIV, which is in West Africa. Stigma and ignorance is completely different there; you can’t even talk about it. My family doesn’t even know that I’m positive. Part of it is that you just feel guilty – it’s my illness and I deal with it – but it has a way of affecting your family as well. And I just don’t want to have to deal with that – not when I’m not ready.
How have the cuts to HIV services in the UK affected you?
In my city oh my goodness, everything just stopped. There used to be a social service team that specialised in HIV where you would go for everything other than medication: peer support, advice on legal aid, coffee groups, sexual information. When the cuts started, 90 per cent of what they used to provide went.
What do you do for support now?
All that went in 2012 and 2013, so then I had to go out and find support. I needed to meet other people who had HIV – there’s things that nobody understands, apart from somebody who has been there. I had to deal with a lot of self-stigma, and a lot of mental health challenges and I needed the space to talk about that. I’ve started my own group in my local area now, because I know what it was like for me. It’s about a year old now, and it’s really slow, but we’re growing, and I feel really passionately about it. I’ve done things I’m so proud of – a lady started attending the group and spoke about how she wanted to have a baby, and so I took her to the doctors and supported her through her consultation. She got pregnant, and I’m so excited to say that I am going to be a godmother this December! That makes doing what we do so worth the while.
HIV is not seen as a ‘woman’s issue’. How does this affect you?
We become invisible. As women, we’re dealing with a gender imbalance anyway – we are carers, we have children to look after, we suffer social inequalities and gender- based violence – if we have got something to say, perhaps we don’t have the skills or the capacity to say it. There’s no empowerment strategy for women with HIV to build that capacity. And so for fear of stigma, and gender-based violence, we keep silent.
You were in a gender-based violence relationship. Did your ex-partner use your HIV status against you?
In a way. Before now, because of the stigma around HIV, I settled for anyone who would have me without realising it. I told him I was positive and he said it was “OK” so I didn’t think about anything else. When I started to get to know him, I found out that the relationship wasn’t what I wanted, but by that point, because of my immigration status, I was thinking about survival.
When you’re in a violent relationship, it’s not your life anymore. It’s that person’s life. So they decide what you do. It’s complicated. Because he knew that I was financially dependent on him, it made it worse. So it’s not just the HIV, but it’s the HIV that made it so.
On the panel, you said that becoming HIV positive is the best thing that has happened to you. Tell me about this?
The stigma around HIV is unnecessary. It’s not the death sentence it was in the 80s. With the right social and peer support, as well as the right medication, HIV can be managed as a treatable long-term condition.
I really meant what I said on the panel. I got to my lowest low, I have dealt with and I am still dealing with physical and mental illness, but I was finally able to face myself. I faced myself, then my fears, and then I found my strength. Having HIV has helped me focus on the most important things in life. Every day I surprise myself with the skills and capacity I acquire and the things I am able to do as a result. I still have days when I am up and down, but the passion I have has turned me into an activist and an advocate, and I am grateful I am finally living a life of purpose.
*Name has been changed for confidentiality.
Words Kitty Drake and photography Ellen Pearson
Join ACT UP on 1 December for the next HIV Blind Date