I started working at Solas in Edinburgh in 1989.

The focus on HIV/AIDS in Edinburgh had historically been more about drug use or work with gay men and less about looking holistically at the person and the range of support needed. We wanted to be able to offer services to everyone under one roof where they could feel safe and comfortable. That hasn’t always been easy because everyone has their own prejudices and sometimes it has meant challenging discriminatory behaviour even within the centre. But one of the things we offered from the very beginning is support for the families. It’s an ongoing battle getting people to recognise that children and young people in families affected by HIV have support needs of their own.

People’s level of ignorance seems just as great as it ever was. You forget that when you work in the field because you are always in contact with people with similar attitudes but sometimes when you are outside your normal context and you come up against it, you think ‘Do people really still believe this?’

It’s very easy for the majority of people to think HIV/AIDS has nothing to do with me. There was, and still is, the notion of the innocent and the guilty. Haemophiliacs and children are innocent and everybody else is guilty and deserves what they get. I know people who were terrified that neighbours and communities would find out their status and there were vicious attacks on individuals and families. That is why somewhere like the Solas Centre, which is based in neutral territory, was seen as a safe space. It was OK to come in and be positive, you didn’t have to pretend you weren’t, but neither did you have to talk about it all the time.

The biggest single common issue for anyone who is positive is the fear of stigma, the fear of other people’s reaction to them, of being discriminated against. However real or perceived that is, it matters to them. Fear of stigma maintains HIV as something you don’t talk about, as a secret you can’t share. Then you carry that additional burden of fear along with all the issues of being positive. What does make a difference is when people feel able to talk about being positive. But for most the choice is not to be open about their status because they are so scared.

I do my work because I believe in every person having a right to be cared for and to be loved and respected. Some people can be very angry about being HIV positive and some people can use it to turn their life around. Whatever response people have is valid – there is no right response. So that’s been the most fulfilling thing for me, being part of something that provides people with the right and the space to be themselves. It’s a really simple thing to give but it can have enormous impact because a lot of people have never had that.

It’s been very sad to lose people, but it’s been very encouraging to know people who have lived long enough to get on the treatment, to respond to the treatment. It’s been wonderful to be with women who didn’t think they would live to see their children grow up who are coming in with their grandchildren. Life goes on.

Martha