Real faces of HIV in Aotearoa. From left Paul Blatchford, Peter Adams, Heather Sangster-Smith, Jane Bruning and Melinda Susanto. Photo / Jason Oxenham
"HIV does not discriminate - people do." Kim Knight talks with five people who live with HIV about the virus that changed the way the world sees them.
It starts with Peter.
"I talk a lot," he says. A qualified doctor with "life challenges". A traumatic brain injury, three years of homelessness and stints in emergency housing. Oh, and he also has HIV.
"It's a part of our lives, not our identity," says the 43-year-old. "We are people with our own stories that contain an element of seasoning, of HIV, that does flavour our lives."
Heather smiles. "That's very eloquent. I like that." She is 61 and legally blind. Her late HIV diagnosis made her susceptible to "opportunistic infections". One of them took her eyesight.
Every human body contains oxygen, carbon, hydrogen, nitrogen, calcium, and phosphorus. Six elements make up about 99 per cent of our mass. We are all just skin and bone, blood and water. But some of us wear glasses. Some of us prefer chocolate cake to banana cake. And some of us have HIV. None of these things will kill us.
Last week, five New Zealanders who live with HIV came together to talk to Canvas magazine about what they describe as their "manageable condition". Ahead of the Auckland-wide World Aids Day Festival, they wanted to put real faces on an acronym that has terrorised and demonised - but also, they say, made them better people.
MEET THE REAL FACES OF HIV
Heather Sangster Smith, 61, six years with HIV.
Paul Blatchford, 55, 18 years with HIV
Peter Adams, 43, 10 years with HIV
Melinda Susanto, 36, 13 years with HIV
Jane Bruning, 62, 32 years with HIV
When, why and who do you tell?
Peter: When I contracted, I was in a relationship. It protected me because I didn't have to disclose to sexual partners ... as soon as I became single, I had to disclose to people and if they took it wrongly and they talked to someone else - I lived in Rotorua, it was a small community ... it's all talk behind closed doors. That's why I'm so strong about talking about it.
Melinda: I've been sharing my story for about 10 years or so now and it just became normality to me. Since separating from my husband, suddenly I'm faced with the same sort of thing. I don't have to tell people if I don't want to, unless unprotected sex is going to happen - but I choose to. It's part of who I am.
Peter: Is it similar to ... I'm trying to think of a comparison ... When do you tell a person you've got kids? Is it on the first date or when they come home and the kid says, 'Oh, hi Daddy.' HIV is normal for us but when is it the right time to tell people?
Jane: There's this external stigma the public put out there and then there's this internalised stigma. I'm coming up to 32 years now living with HIV. I'm used to it, I know it. After my last relationship, 25 years ago - and I was diagnosed during that relationship - I have not been in a relationship, ever. I've not even been on a date. It's not about being afraid to tell someone, it's about feeling worthy. That stigma is so ingrained internally. For me, the door is closed. For a long time, I found sex quite dangerous. In my head, sex was poisonous, sex was the cause of all evil and sex was why I'm here. I was afraid to have sex with someone else in the earlier days, because you could pass it on then but also I didn't feel sexy. I stopped dancing, because to me dancing is what you do when you feel sexy. I felt I'd lost my sexuality, really. It has really affected my life - in some good ways, as well. I would never say I'm glad I have HIV but I'm one of those people who looks for a silver lining. Having HIV has opened up a whole new world for me. I've had a very good life, a very good job, and met amazing people.
Paul: I came out gay at a time that you didn't. I had a lot of discrimination from that, from the very start of my life. I really just thought, 'Well this is my life, people get to discriminate against me.' It was legal then, to tell me I had no rights. So when the HIV came along about 18 years ago, I thought, 'Oh yes, just another reason for people to pick on me and discriminate.' I just took it on as another burden really but along the journey, when you see the advances that are made and the people that we've met - absolutely extraordinary people who I'm so inspired by - they are the people I'm so pleased to have in my life ... I always considered myself a very weak person, or at least I was always told I was. I look back and think the strength it must have taken to get through that? This has been an extraordinary journey. A hard one, but a blessing some ways, as well. I realised I had something important to say. That's valuable to a human being, to think, 'I do have a place, I do have an important message.' That's a bit of life-changer.
Peter: Paul really gave me hope when I first met him. It's not being a victim of HIV, it's being an example of how you can live beyond the diagnosis of HIV.
Heather: I was ill for several years without realising what it was. So when I got to hospital I was dying ... I suppose I looked like the person we used to see in the 80s and 90s. Sometimes they asked my mother if I was her sister. It was difficult, because I love my mum but I didn't want to hurt her. I didn't tell her for well over a year and it's something I really regret now, because she's my biggest fan. She's absolutely amazing, she's got my little poster that says 'women can get HIV too' she shows all her friends and she even took it to church about a fortnight ago and had a little talk about 'my daughter'.
Is it okay for people to ask how you got HIV?
Paul: It's not a question that we feel really appropriate to ask, because it's none of their business and also ..
Heather: But people do ask it.
Paul: Also, it doesn't matter how you got it. People will always assume, 'Oh you got it from having sex.' There are so many other ways.
Peter: What people are asking is who is to blame? Is it because you went out there and were sleazy or drug-taking or whatever? Or did someone assault you and do this to you?
Melinda: Anyone can get HIV.
Peter: It's how you deal with it and live with it. You are who you are at the moment. How you got it, historically, is our personal business to share. You can ask about it, but we're also allowed to say no.
Jane: People are naturally curious and I'm not sure it's always a judgment. I think sometimes it's just a conversation. A lot of people don't like to be asked because they feel like, 'Oh, okay, you got it through needle exchange, so you're a druggie and you deserve it'; or, 'You're gay so of course you're going to get it'; or, 'Oh you were born with it - oh poor you, you're an innocent victim.'
Peter: People like boxes.
Heather: One time I was speaking, the question was, 'When did you stop being a victim?' I said I never felt I was a victim. Somebody else said 'well, clearly it wasn't your fault'. It was the reverse of stigma. It was a very strange experience. I thought, 'You've made an assumption about my behaviour and I must be pearly white.' I didn't know what to say.
Melinda: Tell them to google it.
Peter: The thing is, sometimes you don't know ... it's a microscopic bloody virus, it is not the be-all and end-all. To devillainise it, to take that pressure and stress away, would just be so nice.
Jane: If people weren't being judged, then they wouldn't have a problem with answering that question. It just really highlights how stigma works.
What's it like to be told you have HIV?
Heather: I didn't believe it. I was unwell and went to hospital. I had shortness of breath. They tested me for different pneumonias and they thought I had the flu. When the doctor said 'I need to have a talk' - it was, 'You've got to be joking.' I just went into denial, basically. He talked about the fact that I would be well and I would live a long, happy life and that went straight over my head.
Peter: I couldn't tell my family, I was afraid of telling my work ... I found out about [peer support organisation] Body Positive in Christchurch and I heard they were having a dinner, just a pizza meal, all together, no special event. I jumped on a plane and went and visited them, to watch them having pizza, just to know that someone could be normal and not be weeping in the corner because they've got HIV. I needed to see with my own eyes that I could be me still and not have to change, just because I've got to disclose this new thing.
Jane: I did find out in the 80s and there was no medication and so it was a death sentence and it was the scariest thing I've ever experienced in my life. I try to explain it to people ... think about if you're walking home in the dark and you can hear footsteps behind you and how that makes you feel and the adrenalin that pumps? It was like that. Just total adrenalin-pump. I was in a relationship, I had to go home and tell my partner and unfortunately he was also positive and I had a 7-year-old child and I was told I had three years to live, because I'd already had it for two years. So it was scary. It was absolutely scary and I sometimes don't understand how come I'm still here. I guess it was because it was towards the end of the 80s, so I managed to hang in until the antiretrovirals came in.
Peter: Back then, a number of my friends were diagnosed. They maxed-out credit cards, they did all that kind of stuff and they swore black and blue when the f***ing retrovirals worked and they had to pay these visa cards off!
Jane: That's why I didn't get into relationships in the early days, because I was going to die. Then it was, 'Okay, well I'm probably going to be here for another year.' Then it was probably another two years and then, at some point, it was like, 'Oh, I'm not going to die.'
Peter: I believe you will, one day.
Jane: Yeah. But not from this. Not from this.
What do you want people to know about living with HIV?
Heather: In a way, it has been a privilege and a gift even. It's helped me connect with myself more, with my faith and with other people. My feet are on the Earth. It's almost that sense that I am more alive. I have built an amazing community of friends who I would never have actually met before. It's become quite a privilege to walk beside people.
Melinda: It's being able to live a normal life, being able to have children, to be a partner and have unprotected sex - I was with my ex-husband for 10 years and it became a normal thing for me, it didn't affect me as much as people may think it would. The barrier is other people and constantly trying to educate other people. You say, 'Hey I can't pass the virus on, I'm on medications, my viral load is undetectable.' So here I am trying to live this life and just get on with it ... but it's just getting that message out there.
Paul: It's about dispelling the misunderstandings. HIV is not a gay disease. It started off being called 'the gay cancer' - there are women, there are older people as well, there are people of colour. HIV does not discriminate, we are just discriminated against because we have HIV. Ignorance and fear comes from lack of education. You don't know what you don't know. It's really important that people understand that if we're on medication, we are undetectable, we cannot transmit the disease to anybody else. There are medications now to stop you from getting HIV in the first place [Pre-Exposure Prophylaxis or PrEP is a prevention method where HIV negative people take a daily pill to reduce their risk]. There are so many advances - it's a manageable condition, it doesn't stop us from doing anything in our lives ... it's not something that we even think about on a day-to-day basis because our health is good.
How have medical advances changed life for people with HIV?
Paul: When they started talking about ending HIV in 2025, I thought, 'Well that's a very lofty goal and it's a nice dream.' Now I absolutely see it as a reality, and I wouldn't be surprised if it was before 2025. We can't take a pill to keep us in remission from cancer but we can take a pill to keep us in remission from HIV.
Peter: The way I explain it to people is that I am positive and identify as 'undetectable'. I have historically had a positive result to HIV, I have since gone on treatment and my blood has been tested again and with all the machinery and amazing technology we've got they can't find one microscopic piece of evidence of HIV in my bloodstream. The chances of passing it on are very, very, very, very slim.
Melinda: Back when I got pregnant with my first son, I was told I must be in secondary care, that I had to formula-feed, that I couldn't choose my own midwife ... I went through a whole lot of different examples of a lack of awareness, a lack of education from the medical professionals. With my daughter, I decided I wanted to have a home birth because there was no reason that I couldn't but I had to make that informed choice, do the research myself and to fight with everyone to go, 'This is what I want, I'm doing it, I'm going to take my power back.' I thought I wasn't going to be able to have children, and now I've got two children [aged 4 and 7] and they don't have HIV.
Jane: Now, with medications, the virus in a person's body is undetectable and if the virus is undetectable that means you can't pass it on. So you can have unprotected sex, you can have children, so I think that's a really huge change. What hasn't changed, what is now the last frontier to conquer, is stigma. You don't always have to tell other people about your health problems or issues, but you shouldn't have to be afraid to. And that's the difference. If you have cancer you choose whether you tell somebody. When you have HIV it's very, very hard to tell someone. I know from my own personal experience, I kept it to myself for 17 years. [I told] my partner and my family but I didn't tell anybody else. It wasn't until I started working with Positive Women that I 'came out', so to speak. I just can't believe the difference that it makes to your wellbeing. It's just like shedding off this dark cloak and it's so empowering.
Paul: When I was in the hospital not expected to live, we planned my funeral, right down to the finest detail. My partner and I understood that, when we got together, I would die first ... I literally had to get to know myself again and think, 'Well, what's my life about?' I was 50 and for me life literally did begin at 50. It hadn't been much of a life before then. I'd been covered in discrimination and abuse. But here I was married to the most amazing man, we had children and grandchildren - all these things as a young gay boy you never comprehend and there you are ... I thought when did this happen? And what do I do now? That was when I threw myself into voluntary work, into getting an education myself, especially when it came to HIV in women, HIV in people of colour. I would always think, 'I'm a gay man, I'm discriminated against now I've got HIV.. But you add on to that gender, colour, age, etc ...
Who should get tested for HIV?
Peter: We get cholesterol checks, we get cervical checks, we get all these things with our health, why the hell can't we take the stigma out of sex or sexual health and just make it part of our yearly check-up, rather than waiting to suspect our partner of cheating on us, or men not getting tested because that might mean people think they're gay - you know, take all of that crap away and say, 'I'm a human body, there is risk any day that I can get all kinds of things, why don't I just get a warrant of fitness every year, including a full run of sexual health checks?' Do I get tested or not? Take the choice out of it, just make it mechanical.
Jane: We started a campaign a few years ago about testing for women, because over the last four years, four women have died because of late diagnosis ... nobody thinks to offer them an HIV test, because it doesn't fit the risk profile.
Paul: HIV doesn't discriminate, people do, and it affects everybody ... Doctors often don't even think to ask a woman to take an HIV test. In one case, I think a woman was diagnosed and was dead three weeks later?
Jane: Five days later. Another woman was diagnosed on the morning she died but she never even got told. She was in a coma. The sad thing is these women don't just come in sick one day. They've been sick for years, they've been going in and out of the hospital system for years. It's the same for heterosexual males. There have also been two heterosexual males die since 2014. Testing works.
Heather: Make it standard.
Melinda: You don't have to be sick to go, 'Oh, I might have HIV.' People can live for many years without any symptoms at all. Getting tested could not only potentially save your life or save you from getting really sick a few years down the track, it can also prevent you from passing it on to infect other people.
Jane: My partner got it from me. My partner prior to that died and he had Aids so I got tested. I felt really, really guilty at first and - this is the first time I've ever said this - what I felt most guilty about was that when he went for the test and he came back positive, I was actually a bit relieved. I thought, 'He won't leave me, we've both got it, we'll stay together.' That was just a flick of a thought and then it was like, 'No.' But I was able to get over that. I didn't know. And he was good about it too, maybe that helped. If you have unprotected sex with somebody else, that's the risk. You can get pregnant, you can get syphilis, you can get HIV. There was no intention, no knowing. I think you can feel guilty for a little while. But it's not healthy.
Are people's attitudes changing?
Jane: I got a phone call from somebody three weeks ago, she'd just been diagnosed. She's staying with a family member. They are fine with her staying but she had her own cup, she had her own plate and she had her own cutlery and I'm thinking, 'This is happening in this day and age?'
Peter: There's a massage therapist who refuses to touch anyone with HIV because there may be cuts in the skin. It's bulls***, but you can't fight that.
Paul: I went for a blood test quite recently, six months ago and although there was no blood showing from where the needle went in, the nurse said, 'Oh, would you mind putting on your own plaster?' It's really hard to do that one-handed.
Heather: I was in for an operation and they took the cannula [medication tube] out and it went everywhere and the doctors and the nurses just went into absolute shock - they didn't care about me. It was, 'What do we do, what do we do - get some gloves on!' It was a huge event and I was just bleeding all over the floor, thinking, 'Can't you put a plaster on me?'
Melinda: I'm used to answering the questions and I know the answers but sometimes I just can't be bothered. Can't I just sit there and be quiet?
HIV IN NZ
An estimated 3700 people living in New Zealand are known to have HIV. Of the 178 diagnoses last year, 111 were men who have sex with men and 27 (18 men and 9 women) were from heterosexual contact. One person contracted HIV as a result of intravenous drug use and one child born overseas was diagnosed in New Zealand. The remaining 38 people were infected by unknown or other means.
World Aids Day Festival, Auckland-wide, until Sunday, December 1. Drag wars, choirs, concerts, community discussions and the "woman in a bubble" live installation. Full programme: worldaidsday.org.nz
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