3. + Objects
Material: Blood from HIV+ donors
There are people who are not able to donate their blood because of infectious diseases contained in it. The objects in this series are produced from the blood of donors that are HIV+. Stigmatisation and taboo surrounding HIV are still an immense burden today and they find their physicalization in the blood of an infected person, that is what we are afraid of, the blood. So the possibility to make an object that is sterile and can be touched from the blood of a donor that has HIV is a possibility to break this stigma and taboo. The objects are accompanied by interviews of the donors that focus on their life and how it has been affected by the disease. The work is intended as a series conversation pieces that give a stage to the individual and their story, rather than their medical status. Commissioned for the show ‚Being Human‘ by the Wellcome Collection.
Transcript of the Interview with Garry Brough
I came to London 1985 by which point people were aware of HIV, 1985 was also the year were HIV testing became available in the UK. So you know I was 18, just got into college and when I went to sexual health checks I had an HIV test aswell because I thought its the right thing to do and I wanted to know. Most people still didn't do that at that time you know, I had lots of friends who said: 'why would I want to know that, if I got it, what if I'll get it what if I'm going to die? I don't want to know that I don't want to be thinking about that.' And that did not make sense to me, I always thought to know is better and that knowledge is power. So I just went and had an HIV test with my sexual health test every year, and for four years in a row, actually five years in a row it was negative, and then in 1991 the HIV test came back positive. What I realized was that my last test was a month before I stopped drinking, and in that last month of drinking between my test and stopping I contracted HIV.
When I was diagnosed I told my friends and flatmates and I told my parents, they were devastated but they were really supportive.
I know a lot of people had really bad responses from the ones around them. I think partly because I knew some people, mostly from my ex-partner that were HIV positive I had no judgement about the fact that they had HIV it was just really bad luck that you had HIV. And so I didn't have any judgement about it as a condition and so I kind of expected that is what the people around me would react like aswell and that if I had it they would be sympathetic; and in fact that was the case.
When I was diagnosed in '91 the prognosis at that time was that I would have about 5 years to live. I was 23, in my final year of college and they said:' you have 2-3 years of OK health because we know that you were negativ last year, but in the next 2-3 years you will start to see things go wrong, you will start to have small problems and then they will get worse and really you will have a year or two of that before you die.' And that was what I had to think about then, I was at college, I wasn't going to see thirty.
A lot of people, most people infact were told if you're at work and you have a pension, cash in that pension and take your dream holiday, do what you have too to take care of yourself while you still can.
I finished college and thought I don't want to just take benefits and be paid to do nothing and wait to die, I couldn't cope with that idea. So I got a job, went to work, and started to look into what I could do for myself. In 1995 I got ill and developed Karposi Sarcoma, the HIV related skin cancer and I came up with a lesion on my chest. When I went to the doctor to have it checked out he confirmed that's what it was and because my cd4 counter had already dropped below 200 and I already had candida, they were both two aids related illnesses, then in '95 that was my aids diagnosis.
That was the part were I fell apart really. That was the toughest point I think. I was still refusing HIV medication, there were some other treatments that were still not working well so I kept on with the naturapathic kind of thing, eating vegetable based, organic foods were very difficult to come by back then, gluten free was impossible so I baked a lot myself, I did everything that I wanted to. But by the time the KS came on and it went into my lungs I agreed to chemo therapy. Since the HIV wasn't treatable I felt that atleast when you have cancer chemotherapy is going to deal with it. They said it would not cure it but it would stabilize it and stop it from getting worse.
And so I started on chemotherapy in early 1996, but also in the same year, late '96 was when we started to have the evidence that was shown at the Vancouver Aids Conference that combination therapy is working and that with the combination of drugs together it was stopping the progression of HIV. My doctor told me about this and offered me various trials again and I said no, when it works and I see it working I'll start and so by the end of '96 into early '97 I started to see friends get better. I saw the evidence, I was still weary about it but when I saw people that have gone into hospital come out of hospital looking and feeling fantastic, going out and doing all these things and really - seeing them well, I said ok, I'll start treatment.
So I started treatment in may '97 on my 30th birthday, despite the fact I was told I wouldn't get to thirty I got there and so I figured this new decade will be a new life and that's where I start. So I made the decision that it would be done on my birthday and that really was a new life. That change it feels like it was a lifetime ago and it feels like it was a different life.
It was a slow adjustment, I didn't know how long the meds would work, they said: 'this could give you another five years of life, we don't know how long it will control the virus. So far so good we are waiting to see as we have longer we will know more.'
By the time it got to 2000 and the millenium I never thought I'd see they were saying :'this could be 10 years, it could be longer.' And so with each year that passed I got more life promissed to me at the end. And that was a stranger process as it was to come to terms with dying: coming to terms with living again was in some ways more difficult because there was so much fear as to what would happen to me. I didn't know what to do, I couldn't come to terms with the thought of what I would do with a life now. I was medically retired, I've been out of work by the time I really to start to think about it for maybe four years and so I decided to retrain. I've been put through an exercise refereal program to get my lungs working again and pilates had worked for me because I didn't like gym training and I wasn't really good at cardio vescular exercises since my lungs worked really badly, but pilates was quiet, it didn't require me to be physically active and it worked well with my mind. So I really liked pilates and I retrained as a pilates teacher, retrained as a personal trainer aswell and at the same time started volunteering and working at my HIV clinic providing peer support. Because the one thing that I recognized is that whenever I talk to people is that when people came into this program they had very little hope. They didn't think they could get better in the same way that I thought I couldn't get better. But when they spoke to me and they saw somebody that had been that ill and that was now well they felt better immediatly, they felt more confident.
I think that when I got diagnosed and in the relation to the drinking previously I didn't feel good about myself, I wasn't happy that I was gay. I didn't think that I had a problem with it, I thought I was well adjusted to it, until I stopped drinking and realized that is why I drank - because I felt bad about myself, because I grew up in the 70's and 80's in a country where, you know, I was bullied and called names as a child before I even knew what being gay was. The other kids knew that I wasn't the same as them, so when I then realized at the age of 12 that I was gay I didn't have any ability to have a better association of what somebody good and somebody nice who is gay was, all I had were these negative stereotypes. And so somewhere internally I had that judgement that I was a bad person, that I was wrong. And atleast drinking got me through that and made me not feel worried and that I could not talk to people. It was only when I stopped drinking and dealt with that and all of my low self esteem that I started to feel ok about myself and feel that I deserve to live in that way. That was a big process and so going through twelve steps programs of recovery where you go to something like alcoholics anonymous and its the fact that people have those experiences and they have those difficulties and they talk to you about it and they are there and they have not being drinking for x number of months or years or decades you think: wow if they can do it I can do it. So that is where I got peer support, the same thing works just aswell for HIV which was why I thought: this is what helped me most in my life: other people with that difficulty talking about it, so why wouldn't I do the same? Why wouldn't I take every opportunity to tell people what this challenge means and how I get through it. It's interesting even back before treatment my diagnosis was a kind of a prompt for me to change my life and look after myself more. And I see lots of people, most of the people I see who are diagnosed make a decision to do things differently, to look after themselves more. Take something that is negative and make it a positive, do something better for themselves afterwards.
Ignorance, stigma, prejudice they are all because of fear and the fact that people don't talk about things. And you know, while you can't stop peoples' moral judgements about sex you can change their mind what a person is and the fact that they don't deserve an infection. With the best will in the world we all live in our own minds, in our own heads and don't have those other experiences so its very easy to make a judgement that somebody else is doing something that we wouldn't do so that's not relevant to us. But at the end of the day our humanity is what brings us together hopefully. Sharing that and sharing that experience gives somebody else the opportunity to say: ' oh okay I haven't thought about it that way and I haven't considered that a perspective.' I've always had that interest about other perspectives and other cultures and how we treat each other as human beings. Being open about those difficulties is whats going to bring people together, it's the ignorance and the fear that divides us.