This page features computer generated text of the source audio. It may contain errors or omissions, so always listen back to the original media to confirm content. You can search the text using Ctrl-F, and you can also play the audio by clicking on a desired timestamp.
[00:02:00] If I could ask Heather to come up and share her story with us, please. Yeah, I'm, I'm Heather and um, I was diagnosed with HIV, uh, 11 years ago now. Thank you, Heather. So, um, but, I, um, don't know how long I had it since before then [00:02:30] because, um, when I got to hospital with, uh, breathing difficulties I was, I was told that I had less than ten, euphemistically told that I had less than ten, uh, CD4. So, uh, I had AIDS for quite some time without even knowing it. Um, it's a long story, but I'm so glad that, um, a nurse at our practice, uh, in Parapanamu [00:03:00] said, Oh, you're not breathing that well, let's get, let's send you to hospital. So, I'm glad for her. So anyway, I'm not going to talk too much about myself. Um, I am I want to talk about something which has been on my mind for quite a long time. Uh, it's about self -stigma, because, um, uh, yeah, we always say things to ourselves, our self -talk can be quite, um, negative, I [00:03:30] guess, and I think if I asked for some hands then I'm sure you would probably say yes. That, uh, we do tend to, uh, particularly when we're first diagnosed, um, we do have a lot of trouble just liking ourselves. So, um, I ran this past, um, Abby, Abby Leota, who used to be the Positive Speakers Bureau coordinator a few years ago and I said what, what do you think? [00:04:00] And um, she sort of, she sent me an email and um, it was quite sultry and I was taken aback but I think she was right. Okay, so um, I'm hoping that I won't stand on anyone's toes, um, by what I say because, um, It is sensitive when we talk about our own stuff, because we, we have, um, the stigma index, um, and we also [00:04:30] have, um, HRV essentials, which is a really good online, uh, course for, for positive speakers, but for anyone in the community to look at. Uh, and it has some really healthy, valuable, um, Strategies to learn how to cope with external stigma and discrimination. It does talk a bit about self, self stuff, but quite often You know, we need ourselves [00:05:00] personally strengthened. Okay, so it's my, my, my hobby horse at the moment. So this is what she said. She went, hmmm, on her email. Internalised stigma is complex. I think it's different for everyone, but from my perspective, It's a combination of things that can help people overcome it and thrive. I like the fact that we can overcome and we can thrive. [00:05:30] So thanks Abby. And this is what she suggested. Um, from my perspective, um, there's a combination of things that can help. Um, time, support. Education, resilience, and hope. And then she said, seeing others living with HIV, living their [00:06:00] best life. And then she said, I hope this helps. Um, and yes, thank you, Abby. She's not here tonight, unfortunately, but, um, yes, I agree. And, um, I appreciate what she said. And, um. So the first thing she said is, I think it's different for everyone. And it's true. Um, I've got a bit of a list of, um, negative, um, stuff that we can tell ourselves. Um, [00:06:30] other people can tell us these things and we can believe them, but, um, it's being able to, to, uh, discard some of those things that people say about us. So, um, And also, um, yeah, the fact that, um, the Stigma Index has also given a list of, of, of different things that we, we say to ourselves. So I'll give you a few. You have feelings of shame and guilt, [00:07:00] anger, worthlessness, anxiety, people who've said I've betrayed my, my values, or I beat myself up. You have feelings of shame and guilt, anger, worthlessness, anxiety, people who've said I've betrayed my values, or I beat myself up. Ne wrapping up. We lose confidence in ourselves And also we have trouble um, making trusted friends. That's quite a hard one. We find ourselves, hard to accept ourselves and our [00:07:30] status. And but there are positive outcomes as well, so those are some of the ones that we work with. We do beat ourselves up with. Um, this is called self -stigma and I'm sure you recognize some of them. Then she said, um, there's a combination of things that help. And the first thing she said was time. And I agree with her because, um, [00:08:00] time is a bit like sandpaper, I think. It's like when you want to smooth off something really nice, like you're making a cabinet and you want to make round corners, you smooth it off with a bit of sandpaper. And that's what time does. I think, um, We smooth off our edges and we also can blue the edges by just having time. And so if you're first, if you're early diagnosed, um, I can say that over time things don't get quite [00:08:30] so raw. H months later The theatre season even began. Of course support that's what um, I found straight away I met a really hugely lovely bunch of people who supported me and uh, loved me. Uh, people I normally would not have met in my entire life. Which i think is absolutely wonderful because you know suddenly you got a group of people who, who are really respectful and love you to pieces because of who you are. So [00:09:00] yeah, support. Also education, she said, and that's really important too. I've felt that when I first was diagnosed, I wanted to learn everything about HIV. Um, and ask lots of questions, and um, just find that, and also the dumb questions, because sometimes we have to ask the dumb questions. She also said resilience, and I've been interested in that word resilience for a while. Yeah. I used to be a teacher and we talked about, we talked [00:09:30] about resilience, particularly if the children were being bullied. And we, we worked out that it's like a bouncy ball, you know, when you bounce a ball and it bounces really well, it bounces up to your hand. If there's air that's not in that ball, of course, it doesn't bounce so well. So we talked about the fact that we've got to keep our tanks full. That to, to have a good bouncy ball, we need to get lots of air in it and not hot air. But [00:10:00] yeah, that we can actually. Keeping our tanks fallen. That means other people. That means support. That's means that we can't just put ourselves, uh, our head in the sand. And of course she said hope. And hope is an interesting one because it's very broad. I had a long think about what hope might mean to me. And it's like, it's much more than just optimism. [00:10:30] Like, oh, things will be alright. It was more, it's more for me, it's like getting out of bed in the morning. It's, it's, um, starting again each day and every day. And sometimes getting out of bed in the morning can be hard. And hope is part of that. I'd like to add just a few more things to that, um, Abby has spoken about. I also want to add a few things. And also, where the [00:11:00] stigma index is also added to it. One of them is learning how, learning gratitude. And, um, I want to quote something, uh, somebody who said that spoke, um, about the stigma index. This is what this person said. I now feel joyful and grateful for science and for the people who fought to implement change. Which I thought was rather lovely. There's people gone before us who, [00:11:30] who, who died. Thank you. And as gradually with the drugs, drugs were pretty awful, but there were people that really fought on the science side and were quite healthy. She, uh, also another person, and I, I feel really also really grateful for the people who looked after me in hospital. I was there for seven weeks, um, and with multiple issues, as you can imagine, and I'm just so grateful to [00:12:00] the medical staff and to the nurses, they were amazing. Also, another thing is to believe in ourselves. And this is what somebody said in the stigma index. Having HIV has made me a better person. HIV changed my life as well. I got a friend who said to me, after I'd been out of hospital for a while, she said, something's different about you. She said, you're [00:12:30] softer. And I had, um, become hugely less self -judgmental, and also I, uh, was able to accept other people so much better than before, so something changed in my life. Heberi, Elie will also need to change our narrative. Abbey said that it has made me more compassionate, and aware of what true suffering [00:13:00] is all about. I do feel the way to change this is to continue to face the hurdles and own the journey. Hefyd, hefyd, hefyd, hefyd. Seeing others living with HIV living their best life. It's so beautiful. We can sink into isolation and loneliness. And [00:13:30] we can learn from others. So, we've got a choice. My friends are an incredibly valuable, um, part of my life. And give me strength. I can choose to believe and accept what other people say about me. Atau, I can stand with my friends, and shoulder to shoulder. The last, um, comment is beautiful. I now [00:14:00] am able to assist with, with combating stigma and discrimination. So, somebody who'd taken the whole journey, and now is at the cutting edge, and that's what will happen to a lot of us as well. So, I just hope that, um, We stand strong and believe in ourselves. Thank you.[00:14:30] I, I like Heather's story and, uh, I, I can always hear it again even though it makes me cry. Yeah, yeah, she's a good friend and... I'm pleased to be one of those people that picks, picks her up as she picks me up. Uh, now I have another friend to come and speak. If Jeremy could please come up and share some of his story.[00:15:00] Kia ora tātou. Ko Rangatuhi ta maunga. Ko Parirua ta i awa. No tāua a hau. Ko Naylor tōku whānau. Ko Jeremy tōku ingoa. Hi everybody, [00:15:30] I'm Jeremy and I'm a 42 -year -old queer male living with HIV in Wellington. Firstly I would like to acknowledge I am grateful to those people who have passed away from HIV or AIDS -related illnesses. I am grateful to both Michael Bancroft and Te Papa, or as they are officially known, Te Papa [00:16:00] Whangarewa, for keeping the AIDS Quilt safe for future generations. I would also like to acknowledge the support, I have received from the following organisations. Wellington Hospital, especially the Infectious Diseases, they've changed their name, can't remember what it's called, but, [00:16:30] team there. Also Body Positive, what was called the NZAF, or New Zealand Aids Foundation, now called the Burnett Foundation. ...and the Positive Speakers Bureau. There is hope. In July 2008, [00:17:00] a friend suggested I get an HIV test. So I did. I was diagnosed as being HIV positive. I took the news of my diagnosis pretty well. I wasn't stressed about it, which is probably because [00:17:30] I'm a pretty happy person most of the time. When I was first diagnosed, I felt shameful, stupid and angry. I was surprised because I didn't have any symptoms at the time. That's the thing. [00:18:00] It's... Similar to COVID -19 in that respect. You can have it without having any symptoms. I knew a reasonable, well, I thought I knew a reasonable amount about HIV and I thought I'd never, I thought I'd never catch it. How wrong was [00:18:30] I? I was infected with HIV by a high -profile person in the media at that time. Shortly after my diagnosis, I started taking medication. The first medication that I was on was horrible, horrible, absolutely [00:19:00] horrible. It gave me two side effects. Mereka angen, angina a diarhea. Angina angen easy to deal with. I took my meds just before I went to bed. So, no problem there. Diarhea, however, was my biggest concern. [00:19:30] It was a huge problem for me. So, I started taking medication. Mae angen i kontroli balau i mi, ac rydw i hefyd yn mynd i dyddiau hyn hefyd. Rydw i wedi teime stigma oherwydd status HIV i mi.[00:20:00] Rai mlynedd mai rydw i mewn, rydw i mewn Auckland i weithio. Rydw i wedi teime persona ar -lein, Rydw i mewn Auckland i weithio. At his place, he[00:20:30] was going to do the act, if you like, which I was really looking forward to. However, he insisted on me wearing a condom, which if you know anything about the current science around [00:21:00] U equals U, Otherwise known as untransmittable equals untransmittable. The risk is virtually zero. Can't be totally ruled out, but it's, it's so low that it's worth not worrying about really. Even though HIV transmission via oral sex is low risk. By the way, the person [00:21:30] who I... He who infected me with HIV committed suicide when he was in prison. I guess it can't be guaranteed who it was, but I think it was a certain person. He committed suicide when he was in prison. Because I take my [00:22:00] HIV medication every day, Hei, I can live A. Fully normal and long life. As long as any other healthy person. HIV does not define me. It's a small part of me. There is hope because [00:22:30] he isn't here to haunt me anymore. And also, because the medication is better than it used to be. There is hope. Oh, thanks, [00:23:00] Jeremy. You make me, my voice all a bit quivery. Um, uh, I've a lot I want to say, but I think, um, I'll stick to the bit of paper, the scrappy little bit of paper. So, if I could, please, uh, invite... Glamour phones to sing a song and we can have a moment to listen and then [00:23:30] to those who would like to light a candle for remembrance of someone lost. We've all lost someone. Please, please come up. It's a bit tight on the side, so please just come up the middle and light a candle and don't steal our lighters, eh? So, Glamour Phones.[00:24:00] This shining night of star -made shadows round, Kindness must [00:24:30] watch o me this side the round. On this shining night of star -made shadows round, A shining night, this shining night. Star[00:25:00] -made shadows on the stars, this shining night. Which shall [00:25:30] I deny? The late chill lies down the north, All is healed, all is held. All is healed, all is held. High summer [00:26:00] holds the earth hot so cold. The late July's down the road is easy. All is well, all is well. High summer holds the earth hot so cold. Joy on this shining night. You're [00:26:30] on this shining night, You're on this shining night. I wait for wonder, Wondering far alone, Of shadows gone. [00:27:00] The uh, Uh, Uh, Uh, Uh, Uh,[00:27:30] It's shining now. [00:28:00] Your rock is shining now. You might think I'm [00:28:30] greedy, Lighton, too, but, uh, when I was, when I was, um, first getting help from the, uh, the establishments, the, the, um, being a trans woman, I had no, uh, I should word this properly, as a trans woman, I didn't get invited to the males or the females, uh, ...support system, so after I finally did get, [00:29:00] you know, back in the day, uh, invited to the, the women's, um, uh, support system, positive women's, um, uh, we went on a, um, something called a positive leadership development, um, course, uh, where we learned a lot about, um, coping mechanisms handed to the HIV community from [00:29:30] the, um, The indigenous peoples of Canada, um, and a lot of learning centred around those indigenous, um, coping mechanisms and belief systems. Uh, while I was there, um, I made friends with a lot of people, but two of the fellas that I really loved, um, have both passed, you know. One, um, Matt Hall, [00:30:00] he was the first uh, openly gay person to play AFL, Australian football, um, whatever. Um, yeah, and Christopher, he looked pretty sick, but, you know, the big healthy one also passed, so we are losing loved ones still. Um, but we're here [00:30:30] as survivors. So I'd like to update you because last year I was a bit of a mess health wise. And so I'd like to tell you what's changed and how. Uh, I can carry on from what he they said about, you know, self advocating. Um, You know, first, first is to get your, your, your self worth right? And um, and, and [00:31:00] after that, having HIV be, became an asset for a lot of us because it made us self aware of our health and of our minds and, and that gave us an advantage. So, um, Uh, you could say that our life expectancy is slightly above average, because we're aware. Um, now, as, as you all [00:31:30] know, um, medications and, and our health system is being threatened, uh, s-, um, and my health forced me to look for alternatives, so I've found a lot of success. He's spoken one NIH side do you imply and not only with Cannabis too stop the pain and you know abs to stop the you know source [00:32:00] that might heal from most of the found the most obnoxious little bleeds he can in to real world of wonder I have damage kidneys and you will not twistrey The relief I get from eating dandelion, just the leaves, just one in a whole salad, is enough to, to, to help my, [00:32:30] my system function better. Uh, and there, there are a few other herbs, uh, which can't be... uh, turned into pharmaceutical products, so their knowledge is, is kept away from the mainstream. But, but through the help, help from a couple of uh, uh, rongopractitioners and um, [00:33:00] enderlife carers, uh, palliative, you know, they make palliative meds, uh, cannabis meds, yeah, they're in this room. Tony and Anthea have They've been, you know, the rocks I rely on. And, yeah, yep, so I'd like to thank those two wahine. Um, and now I've totally got blurry eyes and I can't tell what we're going to do next. Uh, [00:33:30] I would like to open the mic up. Well, you know, you'll have to be your own microphone, due to us not getting the keys to the microphone and the sound system and... Uh, so if anyone would like to come and say words, um, and share, share stories of people you've lost, uh, or... share successes that, that could make us smile. Please come forward. Hello [00:34:00] everyone, my name is Margie Fancypants and for 20 years I've been completely undetectable as of January this year. As with, uh, as with pretty much any major disaster event, uh, there was, there was more than one thing that led to my HIV infection. Uh, it was a, uh, [00:34:30] it was a tragedy of errors, really. It was one thing after another. Uh, my, my first wife was abusive and that went up to and, and beyond first degree homicide attempt. It was a tragedy of errors. Uh, they, the ongoing abuse, even after that, caused me to be suicidal. I went to see, a friend intervened, took me to a doctor who put me, slapped me onto, uh, Effexor in SNRI. Uh, since there was nothing wrong with my [00:35:00] brain chemistry, that made me manic. And then the doctor, uh, snap -diagnosed me as bipolar, put me on lithium for four months, of which I remember nothing. Uh, but during that time I was raped. and infected. Um... The, uh, uh, over the, uh, a year later, uh, Simon, who in fact when he died, the candle was lit for him. Um... [00:35:30] Over the following three and a bit years, uh, I had, uh, six HIV tests, which were faulty and all false -negative. So, uh, when it finally struck, I was completely unprepared. And, uh, uh, and I got drastically ill. It took weeks of going to the hospital again and again and again before I could even get them to admit me. And, uh, after a few [00:36:00] days in there, the doctor, whose name was Dr. Nutting, he was an aptly named entity. Thank you. Came in, he said, in the morning, he said. You have HIV. Are you a homosexual? Um, so it was good to see that he was focused on the medical issues there. Um, a few days later I checked myself out of that hospital against medical advice to go die at home. [00:36:30] Um, I had a son who was one year old at the time, his mother, and he were not infected just purely by happenstance. Thank you very much. Um, his pediatrician found me a doctor at the University of Alberta Hospital. Dr. Duncan Webster was a, a wonderful kind man who first helped me put, put together emotionally, then helped me work on getting [00:37:00] the panopoly of secondary infections tamped down. Uh, and then in December of 2004, uh, we prepared to start with antiretrovirals, including, including AZT. We started with number one. Uh, at that point, uh, like Heather, my CD4 count, after three tests, was listed as less than 10. Uh, the viral load was too high to [00:37:30] measure. The highest they could measure was 200 ,000 viruses per cc, and Dr. Webster estimated a million. But we started it, and, uh, in January 2005, I came back in, we did another test, and my viral load was undetectable, lower than 50, which was the threshold at that point. I believe it's around 10 now. Thank you. I've never had a viral load test that returned a number, ever. [00:38:00] I've been continuously undetectable for 20 years. So, medications work. Uh, my compliance rate is 99 .8%. So, miss a dose every couple of years because shit happens. But, uh, Fast forward 17 and a half years, uh, I was in, I was in Montreal and, uh, at the, uh, beginning of my, of my gender [00:38:30] explorations, uh, during Pride that year, uh, there was the, uh, AIDS 2022 conference being held in Montreal and, uh, actually my, my doctor keynoted there. And as part of the, uh, part of the celebrations, the Pride celebrations, they held a Vogue Ball, the AIDS 2020 Vogue Ball, and I went. And I saw a friend of mine there [00:39:00] named Lisa. And, uh, in the, in the final act of the night, which was a dedication to the survivors of AIDS, Um, Lisa said to, she, Lisa, Lisa's a very strong girl, and she said to me, Climb up, I'll pick you up. Because we were towards the back of the crowd, and she lifted me up on her shoulder, and I could hold out my arms like that, and I was flying above the [00:39:30] crowd. And everyone was cheering, it was for the first time in my entire life, I felt like a hero for having survived. You see, because while h -a -a -r -t allows us to survive, In order to live, we need h -e -a -r -t. We need community, we need art, we need song, dance, we need joy [00:40:00] We need to fill our hearts, we need to uplift each other. And for that, I am so deeply grateful. O because I, in the in the time since then I've become far more involved in community organizations of many kinds. Has truly enriched my life. And so I want to thank all of you. I'm connected with all of the organizations here tonight, so I feel really [00:40:30] super belonging. And I'm so glad to be here in New Zealand, and uh, I'm looking forward to seeing all of you. Each year in the future. Thank you. I think we, uh, might have to [00:41:00] close up. Um, so if, if I could have, uh, Te Whanawhana sing a last song for us. Uh, and, and say a few closing words, please, Kevin. Oh, sorry, I forgot something. That's why she came down. Joseph, I'd like to say a few words to everybody that's here tonight. Especially to, to Whanawhana and [00:41:30] Glamourphones, The Burnett Foundation, Body Positive and Positive Woman. Because without your support and your dedication and being here tonight, it wouldn't be successful. So please, I would like to say we really appreciate you coming. Every year, this is my second year, but we couldn't do it without the funding of Burnett Foundation. Body positive, all positive, everyone. And also, sorry, thank you Byron. Byron and Gareth for coming in tonight and your own [00:42:00] time. We really appreciate it. Thank you so much.
This page features computer generated text of the source audio. It may contain errors or omissions, so always listen back to the original media to confirm content.
Tags