I first learned I was positive in 1994. I was unwell and went to a friend of mine who was my doctor as well, and he just threw every test at me possible, and a couple of weeks later he hadn’t got back to me, so I rang him.
I just happened to be at my father’s with my daughter when I rang him to find out the results. I’d gone through the list of every test that he’d done, and I got to the HIV test and that was when he said, “Kim, you have to come in and see me. I can’t talk to you over the phone,” which, you know, was, like, obvious. And I actually said at the time, “Richard! For crying out loud!” “I can’t, I can’t tell you over the phone!” He realized what the protocol was. So I hung the phone up and I looked at my daughter and I said, “I’m HIV-positive.”
My father was out at the time, and he came back in. He’s partially deaf, so you need to repeat things. And I was quite traumatized at that point, trying to process. He came in, and I said, “We’re just going down to the beach,” and he missed it several times. And I said, “Dad! I’ve just been diagnosed HIV-positive! I’ve got to go and get some fresh air! Bye!” So anyway, that was where it started.
I went in to see Richard, and my daughter was waiting in the waiting room. I’m sitting there chatting to Richard, and he gave me the news. I didn’t have any information, and, you know, I like to be in control, so I needed information immediately. And with that, my daughter burst in the door. At that point I had her and Richard in the surgery crying together, and I was consoling them ! In retrospect, it’s quite macabre.
There wasn’t anything I could do about it, so I had to get on with it – that was the reality. I overstepped the mark a wee bit straight off, because I wasn’t aware of the stigma and discrimination in this country – I’d just come back from Africa – so I was open immediately. Everyone was quite keen on people to be open, because it was sort of “help other people” and all of that. So I ended up being open for far too long, and then I back-treadled (sic), because it just got too uncomfortable. I got sick of explaining to people, having to educate them, and having to pacify them when it was me that was needing pacifying. So I decided that it was just easier not to be open about my status, and sort of just go on my jolly way. But I was still working in the sector at that time. It wasn’t as if I was not saying I was or I wasn’t – there wasn’t any acknowledgement. It wasn’t me out there with a banner saying, “I’m HIV-positive!”
I did have stigma and discrimination, and because both my children knew about it, I became really aware that I had to be really careful how they articulated it at school and with their friends, so I had to start addressing it in a different way at that point. But the stigma was far worse than that. It sort of was monumental for me at that time.
I come from a fairly good gene pool. All the women in my family are fairly healthy, and if something goes wrong, they get on with it anyway. My grandmother, in the ‘30s, was in the first five or so women that had ever had breast cancer and had both her breasts taken off. I lived with her telling me stories about the stigma that she had to come up against, and she was quite, sort of, “How dare they?!?” There was no shame with her at all. She was wonderful. She was an opera singer, so she was incredibly over the top.
As long as I can remember, my grandmother and I used to always do things together. We’d create things. There always was storytelling, my whole life. It was always embedded in the family. And so for me, storytelling is probably the most important thing, stories through co-creation, you know, art that is working with community.
My art’s always – I’m also a psychotherapist. I’m not anymore, but you never let it go – you’re sort of stuck with it. Years ago, right in the beginning, I was working in different places around the world and I was always using art. One of the first jobs that I got was in a battered wives’ home in England. That’s what they used to call it then, which is just classic, isn’t it? So I’d have traumatized women coming, and they couldn’t articulate how they felt, so we’d draw it. I just automatically went that way.
My art really is quite focused on the virus when it’s my own personal art and it’s not co-creative. If it’s co-creative, I’m still focused on HIV. That’s the work that we do because that’s what I do. But for me, mine’s even more sort of singular and isolated – I tend to keep creating the virus. I do ceramics, and I also create pods. I did cremation of the discrimination and stigma – a huge big pod that we then incinerated, you know. I think I’m bewildered about the fact that there’s still discrimination and stigma. I cannot believe that the human race still hasn’t managed to get over it. It’s like, okay, what am I worried about? Okay, how do we change that?
I’m also concerned that the woman’s voice is still having a hard time getting out there – for me, that is just monumental. Women are up against it anyway – there’s this marginalization for women with legislation, land rights, violence, you name it – all of that rhetoric that goes on, which was there with the “battered wives’ house,” right? And then, on top of it, you throw in the HIV, and it just magnifies all of that. Also what’s attached with that is self-worth. Many women tend to have self-blame? And reassurance isn’t there because they are HIV-positive and society perceives that as being something uncouth, so therefore that’s reflecting on them.
I think probably one of the saddest things for me is that segregation within the HIV sector itself. There’s a hierarchy in there: someone who got infected with blood is obviously a much “nicer person” than someone who got infected with a needle or who had sex or who was a gay man or whatever. And then you’ve got the poor woman that got infected by her husband, and, “Oh, dear!,” you know. So there’s all of these levels with it, for me, which is utterly insane. This is an illness. This is someone that – I am someone that – has a disease that can kill me. And for that, if I had cancer, I would have people being able to talk to me about it or being able to give me a sign of empathy. But when it comes to HIV, people can’t do that. They find themselves squirming within it.
With the hierarchy, there’s also the hierarchy within women within the sector. And that is because of this self-loathing – which is a very strong word, but I see it as part of our problem. There’s “The Good Woman” and there’s “The Bad Woman.” And I’m sorry; I don’t see any difference between a sex worker, a drug user, a housewife. They’ve got a disease, and they need medication, and they need medical support. And they need people to just say, “Hey, it’s okay.”
For me, that segregation within the women’s sector just tears it apart. It comes back to divide and conquer. And so for me, that whole thing of unification is much more important. Back to co-creation, again, which is what my work’s about. Okay, what’s your voice? How are we going to get her heard? What’s the resonation in me?