Bruce Kilmister profile

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[00:00:00] This podcast is brought to you by pride in with generous support from the rule foundation. [00:00:07] Well, I'm a very typically New Zealand born and bred person to working mother and father who we grew up in a state house for children. My twin sister and I and then step brother and sister to my mother's first husband. Working family after the war dead was a plaster a mother was a seamstress. At the age of seven Father, we have time leaving mother out to bring up the family by yourself and we had you know state schools Wisley primary with the intermediate in Mount Roscoe grammar school. And then of course, as soon as I could I started work to help bring some funds into the house. But also I suppose to mainly set by myself having had no fans at all. And those sorts of things Island most young me that that slate wanted, motorbike, and then a car and those sorts of things. And then independence to live alone and fled. [00:01:15] What kind of year which walking [00:01:19] 1951 was when I was born. So by the 1969, I suppose I was at the age of 18 or Lyft, home [00:01:32] 19 or so big time and working. [00:01:37] And then when I as soon as I turned 21, I saw an advertisement in the paper for by a New Zealand advertising for flight crew. So I decided I'd never traveled overseas. And this would be an easy, economical way to do it that pay for it. So I applied and within three weeks I was in their training school, it was a bit of a rush because they were bringing in the DC tins. The new jumbo jets. Well. And after that six weeks of training, which do normally was 12 weeks, because they needed a lot of crew quickly I was in the Air flying decent hands that was approved. Very interesting lifestyle, but only for about 18 months. Because after 18 months, you've served a million capacities to people and you think Can I do another Million Cups of teas. And then I did something rather foolish I brought. I brought a stereo in for one of the hostesses under my concession because I was passenger in back when she was crewing back. And they said that was inappropriate. So they decided that the best thing I could do is resigned. Anyway, that was at a time when I felt was ready to resign this one. So then I went to work for National Electrical Engineering for a few years as their shipping purchasing manager. And then I moved to a textile firm called snow range of textiles for a few years. And from there to another textile company. Which time is attained, there was appropriately some opportunity for me to join a couple of other guys to start our own business, not in textiles, but in servicing textile importers by being the customs agents and shipping managers and that sort of thing. So we started a customs and shipping operation, which was very successful until one of the partners decided to have a major [00:04:00] meltdown and [00:04:03] leave the lead the company into this. I think it was called self transformation, New Age thinking and all this sort of stuff. Well, I didn't want to borrow it. So I resigned and then went to start up a restaurant just as an alternative lifestyle with my then partner. And as well as starting up another customs and shipping agency under my own head because they wouldn't pay me a penny for my third chair, anyway, started that up. And that went very well until I finally decided to close that all up in about 19 2000. And retire, which lasted for about 90 days. And then put I have to do something. So I came back and to volunteer my time at Bali positive all the way through that I'd been very active in the gay community in terms of helping get the New Zealand AIDS Foundation established by joining the founding board, my good friend, Ellen library invited me to come onto the board with Kate Leslie as the chairperson. And my role was to help fundraising because I was a private business. And it was for the perception was I only knew how to find money and and after the AIDS Foundation, then I got very much involved in the hero project. And got involved through that for many years starting the hero parade. And then after hero moving across into body positive, and here I am today. [00:05:50] When did you first become aware of HIV and AIDS, [00:05:53] I suppose it would have been in the just in the early mid 80s. Because we were seeing these reports in the media. And more than that I was hearing from friends was rumored when Bruce Burnett came back that it he wasn't well and he was trying to convince the Ministry of this terrible thing coming. We didn't even have a name for it, then it was just a disease that was killing gay people sounded too far fetched to believe. But then the media started giving these horrendous reports and and it was all of course during law reform as well as very much involved with gay Law Reform helping frame wild and and that was very much a part of having established the AIDS Foundation, which was predominantly supported to support at that time a criminal class of people which which the ministry in its existing infrastructure couldn't hope to reach your or target and all to be able to combat AIDS. And so I my awareness, I suppose was like anybody else's, but then I became very involved with the reason for law reform was so that we could decriminalize a class of people and have much greater effectiveness at the age programs into our community. So they sort of went hand in hand for me at that time in the mid 80s, HIV and Law Reform, etc. And then of course, I think it was 86 we got law reform, which was fantastic. That was an a momentous occasion I can remember being down in the house and in Parliament at the time with frame and my good friend LR librarian, wrote the Constitution for the AIDS Foundation he and Tomic Moreland helped write the legislation for the amendment to the Crimes Act for frame wild and friend invites down for the third reading. And I can remember I can remember sitting in the house and looking down and retrieve our mail and looking up and of course, we would all become very close friends in those days and trigger telling me all melding, we've got the numbers, we've got the numbers, but of course, you could never be sure, because until that final that was called it was quite an ice age. But it was an incredible experience to actually win. [00:08:28] And it was a really interesting campaign was not because I was so also tied in with kind of emergence of [00:08:34] of eight, it was it was very much in terms of some of the rationale behind decriminalizing homosexuality was so that you could rationally reach a piece of the population that was predominantly underground, in terms of the law. And of course, the subsequent more difficult to reach for having the I suppose whatever there was, they had to provide for for people with HIV or to reach them just to communicate with them. So they did go pretty much hand in hand, although there was that strong connection Law Reform very much stood on its own merits to decriminalize what should have been decriminalized earlier. [00:09:22] Can you paint for me a picture of what the feeling was like in New Zealand, when those first reports of AIDS emerged? You know, what was it something like all that's over there in San Francisco was [00:09:34] it was very much, God only in America. If we sort of hear these extremist reports and accent you think are only in America, and we'd heard these things, and they really weren't very clear at all, just simple reports about people wasting and dying and those sorts of things. And, but then it was I've been I've started to be identified with, with homosexuals. And that's when I suppose we started to prick areas up and, and then of course, the New Zealand Swan into action after Bruce Bennett came back and got things going, he met with some great people. Richard, [00:10:22] Richard, the physician from the base, [00:10:28] has now will come back later. But anyway, he was very much involved in getting things going medically with the Ministry as well as Bruce. And then Bruce came up to work and hospital MIT, Kate and Caitlin's legal here, going and she really had some other professionals around like max Abbott, who was the director, I think, at the Mental Health Foundation, are very much involved in mental health and Miriam severe, other people like that was just great. And then once that sign that NLN approached me to come on board for to support them to help with the fundraising because the the head of our first grant, just $30,000, which, of course, was gone almost no time. And we swung into action. And we got our first grant of $100,000, out of the ministry. And I remember Alan and I went to see Bob Harvey, in his name capacity is running one of the large advertising organizations and Bob was very helpful as to how we could start to blitz again, the community in terms of HIV awareness, etc. And it was a case of getting what message you put out there, there wasn't much information about it in terms of, and the media was certainly sensationalizing it, because, you know, people were, were just simply falling like flies in America. And then of course, we started to see the devastating effects of head around here in the mid 80s, through to the early 90s. And the number of people that were just dying. So I mean, it was, it was a sense of ours only in America, impact on us, it's over there, it's not here. And then we heard reports of it in Australia reporting its first cases and then of course, it just wasn't as if it came knocking on the door and announced it was here just suddenly, it was because suddenly, people were getting sick. And it's it's as if it had all ready as if it was here, it probably was already here. It's just it just started to surface it started to manifest itself into people becoming really quite sick. And the community was it was quite amazing because almost every time you meet somebody the conversation was a quick update on on what you'd heard and it was all rumor and all gossip but you know, you've heard sound so has become ill or so and so's and hospital or gets some photos done died. And guess it was pretty scary stuff. It's it's if it was, you'd heard about this thing from offshore, etc. But now suddenly, you're in the middle of a minefield where things were going off all around you and people and people you actually knew were identify as becoming sick or in hospital, or sound sighs being diagnosed with it. The diagnosis was really when people were ill, it was a little bit after that we we were testing people not very much involved, again, with the AIDS Foundation, trying to get clinics set up so that we could do testing, one of the first things we did was to employ a an executive director for the AIDS Foundation. We had, at that stage only a staff of really three volunteers, Neville Creighton, Tony Hughes, and Ray Taylor. And one of the first things we had to do was when we had some money was to employ an executive director. So Ellen ivory and myself were the interview panel of two and we interviewed a range of people. But Jill Amos was also part of the board. And she said that she knew that a man called Warren to be interviewed. And he should be considered for the position. So we interviewed on and employed him for the executive director of the New Zealand AIDS Foundation. And he did I he did a great job, because he came with some political astute illness, and it was highly politicized HIV in those days. And [00:15:10] one book was just excellent, and going through that minefield of politics around HIV and AIDS. And, and on top of that, he, he had come from a background of teaching, and he had strong connections in the labor movement, and then in that educational ministry sort of stuff. So again, working with the Ministry of Health, he was excellent in that too. So I've sort of think one of the greatest things I was part of was getting Warren on board to take up that position. And then one of the first things we did was to rehouse the AIDS Foundation at that time, it was in a tiny little office up there, and we Metropole the metropolis building, I think it's called today. And there was a building there, which has Lufthansa and we had a tiny little office in the back. We had to rehearse it. And we finally got a clinic opened in the Wallace block, the old Wallace block, which is now demolished and gone. That was up at Oakland hospital, it was in the basement. And that provided some testing for HIV. And then of course, we opened up the next center was in Wellington, and the next center was in Christchurch, but they were unusual models, they did not fit within the DHB model that they would the DHB would be totally in control and own the funding for them, this was separate. And that, again, was a whole rash of infighting between the AIDS Foundation and getting the DH bees to actually provide and accommodate the clinic for which for which we would have control. And if cause there was that sexual health felt that should be under their control infectious diseases was coming on board and felt it should be under their control. And then to have a completely under a community group control was alien to them that we finally set those up. And we got those testing going, and then counselors coming on board for positive diagnoses. [00:17:26] What was it like, when the tests actually came on, because I'm in for a period in the 80s, where there was no TSZ. So people were just, you know, kind of It was only when they got over, you know, they suddenly realized they might have something. [00:17:40] That's right. And that was one of the first things they they actually did was to find out a taste for which could be and I can remember that it was finally identified as a virus. And, and then we saw that come through fairly quickly. I think Richard Mitch was very involved in keeping New Zealand medically up to date with what was happening in American Australia and was quick to make sure we could provide the lumbar trees to with the facility to do the blood work. But the testing and itself was a frightening prospect because I can remember, we would do, people people would come in for testing the old way the phlebotomist would take blood from your arm, and it would go to the laboratory and you'd get the results back in a week if it was negative. Because you'd only go through what we call the Eliza test. And if the lies that his was negative, it wasn't a user that would come back. But if the Eliza tests was positive, the hospital would keep it for a confirmatory test what they call the western blot test. And that would take another week. And it started to get quite scary, because people knew that if they didn't get their results back within a week, that it was likely to be positive. And that was really frightening for people. So we then I think I might be a bit hazy on this. But I think at that stage, we had to implement a regime of saying results would be two weeks before people could access them again, because we were worried. In fact, they were suicides between one and two weeks. So again, to just simply put everybody into that same level, we wouldn't give results in two weeks. I might be wrong on that. But I remember that was a real issue at the time for people coming in for testing. [00:19:31] And the reason for particular potential reason for somebody suiciding in that that time frame was it just because the life expectancy of somebody with AIDS at that time was was not high? [00:19:43] Well, it wasn't we had no idea of what life expectancy people could have. All we knew is that, that we'd heard this thing from overseas. And suddenly we're in the middle of this minefield with people dropping all around us. And we we now could clearly identify it, that people that this was impacting the gay community, and suddenly people were getting sick and and not long after they were dying. There was no cure, there was nothing there at the time. It was some way later that we heard of this medicine called a ZT. But that was still why often America and still very much a trial situation. Or when you said that you got this thing and and you died from it. And people are all around us, we're getting this thing. And, and we're dying. And people were doing all sorts of things. I mean, I was very much involved in my business at the time and had a lot of travel between Australia and New Zealand. In fact, I had an apartment in Sydney, as well as my home in Auckland. And my brother was in Sydney and a lot of friends in Sydney, it was still the maker for game into my crate to ultimately and and I sort of sorted by sides of the Tasman more so in Australia, we really had grasp the community and, and people were getting sick and, and dying. In fact, I can remember one guy. It was a close friend of my partner, and he been invited to a party and this young man who wasn't very well wanted to have a party. So he was going to go to a motel and kill himself, but have a party. And then the last thing in the morning overdose. And I can remember, this young man who friend of us was so it actually he thought he would cope with it. But he didn't cope with it at all, in fact, changed him. He became very, very ill, for many years after impacted very badly on him. And and that was all there was no good news. It was it was death all around you. It was just just frightening stuff. And then of course when when I got my diagnosis, there was no, there was absolutely no cure, or nothing. And they had no idea what time to expect and said, Look, don't panic. But you know, we think this will be at least six months before you have to be concerned and about death and dying. And all that sort of thing was pretty scary stuff back then. [00:22:36] I think I was [00:22:39] about 1988 1990. So 30 something. [00:22:49] Yeah. [00:22:53] I have because I was working in Sydney's I have within my own business, I thought I should just pop in and Heather [00:23:01] checkup. And [00:23:05] anyway, I went back the following week. And he said we had that lost all my blood results. So I had to start the whole thing again. Well, that was for in a week, I was over there between starting the week and finishing the week I visited the doctor. So I did the second lot of tests at the end of the weekend. It was another month before I was back in Sydney and I went back and was the end that he told me the results was positive, and rather taken back for it because by that stage, we knew that it was sexually transmitted. And I thought I knew everything there was to know about it, which in fact, there was very little to be known. So you could say you knew everything about it. Certainly, all that all that was known about it. But we didn't know that it was being sexually transmitted, and we should use condoms. And very much, people were being extraordinarily careful. And I I just cannot remember the incident or the occasion in which this transition of infection of the virus would have been transmitted to me. Because again, I was a young, sexually active gay man living the pre age party lifestyle in Sydney with all of the accoutrements of that sort of lifestyle and what it provided and everything that I could, you know, materialistic Lee want or socially achieve was all mine. And my partner and I were having a great lifestyle. And we were being careful. But I can remember, the reason I went to the doctor in Sydney is the week before I wasn't feeling too well went home to the Sydney apartments sat down and started to get violently. just shaking, I couldn't stop shaking as if you've got this heavy cold and shivering, etc. And finally, when I could finally get off the lounge chair, to go to bed, I got up in the morning and found I was all completely covenant, some kind of red rash. So that's what drove me to the doctor for test. And as I went back the end of the weekend, that lost in the blood, so I had to do them again. And when I got back to Oakland, saw the doctors but refused to let them do a test because I'd already done one in Sydney. And I didn't want people in Auckland to know because I was very much involved in the AIDS Foundation and Law Reform and my own business, etc. And then, of course, when I got the diagnosis, and certainly it was a terrible situation on supposedly and and not long after my partner was also diagnosed positive. [00:26:07] And that was [00:26:10] equally as unattractive. But it just seemed to be whether whether we were being diagnosed for something we'd had sitting there for years, we had no idea or recently contracted it. And perhaps possibly I'd had it for some time because I cannot remember exactly the time of transmission or even have a suspicion and a lot of people had sort of think, well, maybe that was that time, perhaps. But now I can't remember any specific time. One or two incidents of peps may be but again, I always remember being careful with condoms once we knew about it. Strange. But you know, I call that the Immaculate and fiction. [00:26:56] Anyway, that was [00:26:58] back when [00:27:00] you were saying that the the doctor was saying, what, six months, you've got six months. So yeah, [00:27:06] this was a doctor in in Holdsworth house in Sydney, in Oxford Street. And he was a he was a I can't remember his name, but he was very much involved with. He was a gay man and very much involved with HIV positive clients. And his life, I remember is impacted badly on him too. He had to leave after a while because he was just delivering these death sentences to people almost daily and seeing people sick all around. And he went away, in fact, and another doctor started to look after me and he said, You know, we've got this medication now from America called AZT, we'd like to statue on this. And that was fantastic. Because I was thinking that what am I going to do? For the rest of the life, I don't want to spend the rest of it worrying about making money for the next payroll. I was sort of getting to a conclusion of wanting to do what everybody did sort out what time I had Lyft and plan how to get as much enjoyment out of life as I could. So I thought, Okay, well, I'll try this AZTN. And it really started to do something, it started to build up my immune system again, and it started to reduce the virus and, and it was fantastic. But of course it was mano therapy. And mano therapy by itself is not sufficient. So after a few months, we started to see a decline in the immune system once again. And and that was a pattern that they were seeing again and again and again countless times. And of course, they they were then introduced a new medication, I think it was DDC or DDR DDI now great because we used to call him boss pills. There difficult to swallow. And the pill rushing bill rushing back then was pretty frightening because I can remember at one stage having to take over 30 pills in a day. And, and, and people weren't staying well, either. Anyway, Joel therapy was a repeat of mono therapy, it worked well for a little while, until I finally worked out that a triple therapy was the absolute gold standard for people. But by the time triple therapy arrived, I was already resistant to to some of the classes of drugs because having failed Mondo and jewel therapy, Sony way as more drugs came along, and so forth. And we were able to find a cocktail and the invention of protease inhibitors, which were much stronger, and another class of drugs. I've always been, shall we say, pretty much at the forefront of getting the newest drugs to take. And today, I'm delighted that you know, I'm still here, still here, but my apartment never made it sadly. He, he he suffered terribly from the side effects of these early medications, they were highly toxic, and they would make his life just miserable hell, the nausea and diarrhea and sickness and he thought there you know, chose not to take them. And I remember struggling to hold him down while his cousin tried to force these girls down his throat. And finally, we just had to accept that he wasn't going to take them and he wasn't going to be well hospital. That time was right. Alice Pegler was the physician in charge. And he told us that we totally would die because of not taking medication. And he also had to tell us that he had tuberculosis, the same time which we thought didn't exist in more that suddenly we're seeing the re emergence of things like TV and so forth. So we arranged to put Vittorio to stay with his cousin in an apartment long Street and it was called and Mariah and this guy because it was a beautiful big apartment on the fifth floor top floor of this building, just next to cartoon place. And because there were a lot of his cousins and Molly boys, gay married boys living there, he was able to get 24 seven care. And it was there that he spent his final days. And I still remember his last morning. And I'm not going to tell you that it's to take it personal and I do get emotional even after all these years remembering it that it was a very graceful termination that he [00:31:54] and then we had a lovely service Vincent Matthews in the city for him and in the sort of traditional Paki hardware failing people and then we took him home to his man I which was in coffee. And as I can remember, because there was still a stigma, there still is, of course, even today, the stigma and worry and fear about AIDS that we weren't even sure we'd be able to take his body on to the Mariah, but his his grandmother had such manner she passed away but the memory of her and his family was such so powerful that of course, we will welcome he lands status, I call it for three days on the Mumbai before we finally turned him into his grave. And that was [00:32:50] that was an amazing experience. [00:32:55] there then I thought [00:33:01] we know a lot more about HIV and AIDS and we know what causes it. And we know now that we've got medication for it, and the AIDS Foundation is really geared up to it and it's doing a great job. It was time for me to move on to something because we'd achieved law reform. I thought what we need now is social reform because we've changed the law, but still stigma and discrimination, about homosexuality, etc. Was was still very much stereotyped and pedophilia, criminality, the feminist, the, etc. So I thought we need some social reform and I, my good friend, Rick's Halladay had some initiative within the New Zealand AIDS Foundation to do a party. And because I had, at that age in my life, a lot of experience with a lot of parties and in Sydney, and that was half of the fun of having a business that I could translate between Sydney office and Auckland office was I could also go to all of the Sydney parties and the underground parties and all those sorts of things. So I, I, I joined Rick's of little group to help organize the hero party I came on in for hero two. And so did a man called Scott Johnston, who has become very close personal friend. And I can remember still being on the board of the AIDS Foundation, when when poor old Rick started to have some problems with with the AIDS Foundation. So we decided that this little party project should carry on and and Scott Johnston and I went to CY Lindbergh and said this has to come on because it's become so valuable. And we had some difference of opinion. But we decided to to register hero, and it became the hero charitable trust. And also within thought, rather than risk the trust aspect which all the proceeds from the party were distributed to the community to fight HIV AIDS. Rather than expose the trust to commercial risk, we'd also the an established legal liability, the hero project limited, which would carry on the commercial trading aspect of the hero party, and it was the hero project limited. That was the legal entity that undertook all of the commercial activity of organizing the party and the festival and later the parade. And then once that had all being realized, and the proceeds determined, those profits will pass cross to the trust to distribute through to the community. But very quickly, we found this was getting shall we say, beyond a small operation, it was escalating very quickly. And there was ambitions about a parade and there was ambitions to make it bigger and better. So we determined that we should keep a ceiling fan of 30,000 for the next year's event, which we did. And, and I can remember the next event had a massive loss. And rather than because it was too valuable to let go, I put my hand in my pocket and I can remember way back then paying out $76,000 to keep the thing to keep the creditors and away and paid and keep the reputation going well. And I made sure then because I was chaman from [00:37:02] three hero three on, made sure that we managed budgets and that we ran it properly and really stood start to come together nicely and was a hero for that we decided that it should be a parade. I think it was here for that we started the first parade down Queen Street and here at five was Queen Street. And then we moved to that Ponsonby road. But by that stage, when we applied it was really the parade which brought the whole matter to the attention of the Civic authorities. And I can remember the other gay groups telling us that they were struggling with funding applications with the Auckland account, Auckland City Council. And I can remember us having to go to the York City Council for permission. First of all, to get a licenses for our liquor, selling at the parties and the horrendous problems Scott was having. And in securing those licenses, it was virtually virtually right up to the 11th hour sometimes. And we thought there was more than just protocol and bureaucracy involved. We thought there was some real discrimination consideration going on in there. And finally, when we organized the parade, we we were asking for some support. And we knew we were advised by offices that the counselors were very much against the whole homosexuality, display, etc, and wouldn't support it. So we found out what the internal machinations of council grounding were. And we found that council offices had authority to make a ground up to 10,000 without having to go further up for political consideration. And I can remember getting a grant for 10,000, which absolutely infuriated some of the council office council laws. And then even worse, I then went around to each of the local community boards. And I remember Kate Leslie, who was chairman, a chairperson of the AIDS Foundation was also I think she was chairperson of the Hopson, they community board and approached Kate and asked for some funding and I went to lots of them. And I got funding from at least three or four or five of them. And I've remember, again, the the Deputy Mayor at that time, David Haye, who, incidentally was at school with me at Mount Roscoe grammar. And he expressed his complete annoyance with council offices making those grants to us and and then we started to we had a community meeting, as we always did at the end of a hero, and we decided that we should take this issue to the council and we then asked to appear within the council meeting or address the counselors at one of the regular meetings about the hero project. And that quickly escalated because we heard that the deputy mayor was asking his more conservative Christian people groups to come along to support his argument. So we then decided we had to quickly spread the word to invite gay people to come and support us. And before we knew it, the whole thing it escalated and become very public and media media interest and was being transferred from the from the normal council meeting room and the town hall to the main chamber and and we filled up I mean, the whole town hall was filled even in the gallery seats with all sorts of people from supporting and neither very much poor hero very much against and and I can remember going to Peter Bic, Peter Beck was the Reverend at St. Matthews in the city at the time and saying, Peter, I'm asked, asking you to come and support us and speak with me to the counselors about how important this event is for the gay community and, and for us to be able to identify with the positive aspects of of our community for the integration etc, and communicate and educate people about HIV and AIDS because that was very much a strong focus of the reason of hero. So existence and [00:41:57] Peter came and spoke for us and then Warren Luber also came and spoke as well. And that was, that was a powerful time for our community to confront what was one of the most last one of the last bastions of of, of homophobia, that that officially time of five beer, if you like it was within local government. And in fact, it resulted in us taking a complaint to the Human Rights Commission, about their, shall we say, discrimination and handling the applications of gay groups for funding. Because the counselors at the time, were very anti hero, and in some of the subcommittee's would make disparaging comments about certain applications from gay groups, etc. And I'm embarrassed to say in many years later, this still happens to some degree. Even when I was involved in an elected representative within Council, I'd still hear these comments. Anyway, their time I can remember thinking, we need to get some of the counselors on support. So I telephoned every single counselor from my home and asked if they would support the hero project. And the time Judith Tizzard was the she was the local Member of Parliament for open Central, she just recently taken over what was Sandra Lee's electric seat. And Sandra Lee was very much for the event because when we had the parade, she was in the parade and very happy to support it, and then do the two that was very supportive. And she came to my apartment, from Gunson street when I was finding these counselors and she listened to some of the abuse side, I got one counselor, and I won't say who but threatened me with all sorts eviction and said I should be locked up, I was a criminal and I was perverted and etc. And it was just shall we say, something that I identified and made it was very clear for me that the homophobia or the stigma discrimination was very much a generational thing very much in terms of my father and and parents generation, because they had the the only understanding of homosexuality was criminalized behavior, etc. And I suddenly got a taste a very first hand direct taste of this, this this opinion of homophobia. So I thought, well, we can't allow that to continue. And we have to we have to take the Council on and we have to argue for the parade to carry on and and to be promoted, it was becoming very, very popular because it was everything that could constitute rebellion to civic authority, I suppose. And we were mindful that we wanted to still have it very much cutting edge in terms of its attraction attractiveness and its sexual challenges because it was homosexuals in the face of the general community, but also wanted it to be fun and friendly and very much saying we are we not we were we shouldn't you shouldn't be afraid of us because we're human too, and putting very much a community attractiveness to it by being outrageous and flamboyant. And all those things that people sometimes associated with the community into actual floats and party parades and marching boys and all that fabulosity as well as having the the hero remembrance float for those that are died from AIDS and having organizations like body positive and the other eight organizations involved to the Oakland aids council to be very much involved in, in in the in the parade as well. And it just seemed to go well. Thereafter, it become become huge, was a national brand name. And we were being invited to speak at conferences for advertising organizations about how we turned this little community event into a national household brand name. [00:46:52] And then, of course, [00:46:55] Scott decided to move to Wellington again for personal reasons or relationship reasons. And I asked Mike McSweeney to come and be the, the director of hero. And that went well. And then sort of 1998 there was a strong suggestion that perhaps my time was over. And we should have, we should have some new blood to take it forward and to carry on. And I've Of course, remember thinking Well, yeah, perhaps is some sense and that and some new ideas and so forth. And that I was a little bit conflicted, because it was a it was a baby that Scott and I had taken under our wing and we developed it to be this an incredible, incredible festival. And I can still remember some of those parties and the parades, etc. They were totally fully unheard of, or unseen in New Zealand, and they would, they became instantly popular and I can remember the achievement of getting after having all of the antagonism from the Auckland City Council, suddenly being gazumped when we've managed to get the prime minister to agree to come and open the parade for us and having Jenny Shipley there and, and the amazing announcement I did to stop everybody in the hero offices and made this announcement of those rapturous applause. But again, that was just a smart politician, knowing that there'd be 150 to 250,000 people gathered in one place, and she was she could count votes better than anybody. So we, we were happy to have that. And of course, the council and the mayor took a very different knew about that and said she was sending the wrong message, etc. But we were delighted, in fact, that it, it certainly did expose, I suppose any antagonism towards homosexuality, it seemed to bring it out of people and, and in a way that we hadn't experienced since the early Law Reform days. But certainly, there were gay people suddenly becoming proud to be who they were. And, and, and no longer, no longer afraid that we had still institutional opposition, I can remember, on Ponsonby road, near the western part is the church and forgive me, I'm not sure if it's the Mormon church or the Seventh Day Adventist Church, but it's in secure grounds with the fencing around it. And I remember going to ask them if they would allow the primary minister and her entourage to pop the official government limousines in the grounds, whilst the Prime Minister came over to the front of Western part to open the hero parade. And they said that have to think about that. And then two weeks later, they came back and said they would accept that as long as I signed a document that acknowledged in that acknowledge their acceptance of allowing the prime minister to park your car on the premises could not in any possible way, being interpreted as their support or endorsement of the hero project parade and homosexuality. So we still had all of that institutionalized stuff coming at us from in in odd situations. And but again, the incredible success of the prayed and then getting that one four main Johnny Givens to come on board from, I think TV three, we we contracted to film the hero parade, and we got a lovely fee, I think $30,000 and year, two or three of them filming the parade, and, and getting [00:51:19] so much support, because I can remember it was all of the funds from the party that we use to fund the parade in years in the first year or two of the of the parade, because no sponsors were would want to get on board. And then suddenly, they saw the success of the parade and the people that came to it and the potential commercial opportunities. And we were flooded with sponsors. And I can remember both line and DB breweries wanting to be the main sponsor for us, because they just saw so many commercial opportunities for themselves. And we again, saw this incredible machine grow to be the thing it was, but to finally have some financial support and backing that had previously stayed away as if it was, you know, some disease ridden thing. But now it was the most fabulous nighttime thing and, and everyone rushed to be associated with it. So that was up until about 1999, I took on the advice and thought, Well, my good friend Scott had now moved overseas with his partner and so had Mike McSweeney who took over the directorship after Scott. And I decided to step down. But I said I'd stay on to help write the budgets for the next year. And they didn't seem to want my advice, they were came to show you say, take it in a new direction with a new artistic integrity interpretation. And I felt a little bit sidelined. But nevertheless, I I was very proud of what had happened. Until we saw the financial myth that taken it into and I was quite devastated about that, because I offered to be very much in confidence and available source for the committee and the chair at any stage for them to call me or talk over things. Because most of the mistakes I thought they made we we potentially made them or we got through them or something like that. And there is some wisdom and history I suppose. But they they determined to take it the way they wanted to. And that created the financial loss, which I don't think can be attributed to any single person or anything like that. It was just just an unfortunate thing that happened. And I remember going to the creditors meeting, and there was a lot of will and support from people and even the creditors were upset, this had happened. And they were very supportive, and they would not withdraw the support for the hero parade and festival the next year. And that was all in place again. And they held I suppose off their accounts. And then the second year, outside of my chairmanship, I suppose, was another huge financial loss. And, and and so was the year after that, I was just devastated and how hero which Scott and I had developed to be this wonderful thing was just being driven down through the whole, because the financial expertise and infrastructure I suppose or management, I don't know what you'd call it. And I can't blame anybody or anything because I didn't have the clothes hands on. But I do remember being very afraid for it. I when I when I left and little regard was given to my suggestion around budgets and sponsorship and grants, I can remember saying, I am listed as a current financial director for the project limited, I'm now starting to insist that you have my name removed from the company's office on that, which they did. And, and there was no, shall we say, legal obligation for me, but I just felt this terrible, terrible, and sadness for where did finished up. [00:55:38] But again, I thought well, [00:55:42] you know, things move on was the only time in my life I actually got a counseling session for, for the for, for seeing that the demise of here. And there was some wonderful people in the community who came out to try and resurrect and supported. And I remember, they were Jay Benny was involved in organizing things. And Michael Bancroft, and lots of good people with lots of goodwill, but it just never, ever quite got back to where it had had we'd taken it. And by this stage, I was volunteering my time across body positive was about this was around 2000 and 2001, I was given a royal honor, for all my work with with [00:56:33] work in the community. [00:56:36] And, and thought I should do something more to help. So I got more involved with body positive that stage. And we were in an office much the size of this, which is probably about 12 by 12 foot, I suppose that was the total size of the body positive office with one other volunteer and myself a man called jack druggies of itch, and I used to come in daily. And just man the phones and be there for anybody who wanted support or some assistance. And we did this for a while. And I thought, you know, the number of people living with HIV now is growing. Still people are getting really sick. And still, that we have medication that the medication is not easy. And there's still a huge amount of discrimination and stigma around this thing. So this is where I could invest my time and giving to the community. So I moved in surely say more into a professional role within body positive. And it was very happy to be the chairman for a few years. And then when I thought, well, I need some remuneration if I'm going to do this full time, so took on a position of Chief Executive Officer and asked the book, got a new board and new chairman, so that we could separate governance from management, and then then work to build body positive to to where it is today. And I'm delighted with with the result. But again, it's one of these things that needs to be managed very carefully, because its financial stability and infrastructures is always precarious. We have a we finally have a a contract with the Ministry of Health, but it's not significant. And but it is sustainable, and allows us organization to operate and rise to meet the challenges that HIV presents to us these days. And I'm delighted to say that with the development that science has given us through antiretroviral medication, I'm expected now to live a fairly natural life and consider other factors that co-morbidities that might impact on my long term health. Besides as well as the HIV in fact, it's more those other comorbidities of diabetes or cardiovascular concerns, it'll probably take me away more so than anything to do with HIV. So I guess in in summing up, in a sense, I like to think I was here before aids, and I hope that I'm here pretty much towards the end of the terrible threat that while it presented with to us, and and and challenged us as as a community. And certainly so I suppose from my perspective, and it's very much a personal reflections saw the amazing sacrifice that people gave with the lives around dying from age two, now we're we're, we have, shall we say, a scientific answer for for medication to keep all well and alive. But of course, now community is evolved. And people don't come to body positive these days with just HIV they come with HIV and other co infections like hepatitis or TV or sad to say a reflection on our community is with the addictions of alcohol and other recreational drugs and even legal drugs Now, some people are addicted to. And more than that, of course, mental health issues was a growing concern within our community. So I think if there's been any contribution, I suppose, in terms of the AIDS and gay revolution that New Zealand has experienced, it's perhaps being able to provide a better place for people to come and then was manifestly delivered to me with my own grand nephew, inviting me to his 21st birthday party in which he said I'd meet his, his boyfriend. And it was a delight. And he didn't know any of the history of and I thought, why should he, he should be able to just simply enjoy his life in a in a discrimination free society, because he happens to choose another human being for his lover, which doesn't quite fit the old, historic Anglican, [01:01:37] I saying the kings were brought up strict with him in that model. [01:01:43] you're mentioning a while ago about the whole idea of stigma and discrimination. And I'm wondering, can you talk to me about how you kind of broach the subject of talking about your own diagnosis with with people New Zealand, and then looking forward over the next, you know, 25 years as to stigma and discrimination has changed any? [01:02:09] Well, yeah, I'm sorry to say I don't notice a great perceive a difference between what people are experiencing today as to what they did. back then. And I guess the root cause of stigma and discrimination is ignorance, Pape, envy and fear. And you measure those two together. And of course, that's what's happened. It is, it is still the very last hurdle and which we have to combat. And we've seen some wonderful examples. In New Zealand, where to combat stigma around mental health, it's been some great TV campaigns. But certainly in terms of HIV and AIDS, there's still a lot of stigma and discrimination. And whilst we deal with a lot of the overt discrimination at body positive in literal actions by employers or landlords or whatever, there is still an incredible internalized amount of stigma, where people have always associated any sexual health issue as, as a result of sleazy or inappropriate behavior or, or less than equal to any other health condition of warranting attention or support. And those attitudes, we still find literally relevant to the work we do today. And they all contribute to making people feel less equal or less able to and they erode people's self esteem, and, and the health. And I think that those are some of the issues we need to do today, because our counseling services very much called upon as as, as those Wonderful Counselor, the AIDS Foundation. For people who are, shall we say, through, shall we say, years of, of being led to believe that they are less than equal. And I felt in my whole life, I guess, I've always had this sense of social justice around fair play, and being, I guess, the victim, I suppose I don't like that term victim, but certainly being the recipient of some of that unfavorable behavior, because I just happened to be homosexual happened to be living with HIV, I think is unfair, and I wasn't prepared to just simply lie down and let it roll over me. [01:04:52] Then how did you? How did you come to terms with actually being able to talk about your own diagnosis? [01:05:00] Well, that was very hard. Because I thought, again, that it was only people who were irresponsible, and who, you know, brought this upon themselves that got this thing and suddenly, here I am living with it myself. And of course, I went through all the machinations of anger and emotion and unfairness, etc. And why me, and I can remember the very first thing when I decided that wallowed in self pity, enough, which must have been a day or two to to talk to somebody about it. And the only person I wanted to talk to was another person living with HIV. And that was the guy, I think he was the current chairman of body positive at that time. And Mark, and I can remember talking to him and thinking, this is the most powerful thing I've ever experienced. And of course, it's all about peer support. Knowing that you're not alone, there are others out there who simply have walked through this journey before you and happy to share their experience and their support and their wisdom with you so that you can discover you're not alone and that there is more to it than what you perhaps or perceive you're facing just at that moment. [01:06:24] One thing we haven't touched on is, over that period of time from the late 90s. There have been a picture from the early 80s as well, there have been a number of ways that people have remembered people, you know, either through the candlelit memorials yellow circle, friends, can you tell me about some of those things that you've been involved in? [01:06:43] Yeah, well, I must say, the things that we have done, of course, as when we've seen people go, the first few often knew about it was a black border and advertisement type notice in the game media. And, and sometimes it was accompanied by a photograph and sort of hit you very starkly, because we still today do not associate death with young people we associated with old people or worst, some catastrophic event, like a car crash, etc. But to see so many young people and people that you may have seen, you know, remember the dance party or a club or a bar or casually on the street, or some of you may have even had sex with etc. So seeing those people go was was horrible. And of course, we seem to be going to a funeral, almost on a weekly basis, to say farewell to people and, and then in the very early days, they decided that there needs to be some Memorial type of service in which we can come together as a community. And, and, again, the idea foundation led this process with the candlelight Memorial. And I can remember being on the top, I think it was mount Eden and having people carry torches and candles, and they were such powerful spiritual moments together, that they were quite amazing. And perhaps this is years gone by now. But once a year, we do in fact, on the third Sunday of every May, we come together to have candlelight memorial service. In every major city, we can find somebody to host it for us, throughout New Zealand. In fact, it's celebrated around the world. And it's identified very much for those that we've lost to HIV and AIDS. And in New Zealand here now in 2013, with love just under 700 people to died with HIV or AIDS. Worldwide, over 30 million of course, and, and I'm not ashamed at all to say that we we recognize those people and, and they always bring out very deep personal feelings anyway. When I think of my sweet angels who've died from AIDS, that were close to me, and I would like to see some tangible Memorial recognition of that and Jonathan Smith and his partner Kevin Baker, together with Todd Andrews and his in partner started the circle of friends and I can remember being elected to the Western Bay's community board, which was part of the Auckland City Council and having a deputation come in front of us, asking us to allow this small group of gay gay friendly people established into council property in western springs. In fact, this circle of friends, which was one of those who've gone been asked to HIV and AIDS and of course was absolutely delighted to be part of the approving body for that and to see to see that come about and and today I'm, in fact a one of the trustees with Scott Johnston and Kevin Baker and Jonathan Smith, for the circle of friends. And once a year or, or twice, we engrave those names into the circle of friends, those who wish to be remembered, and those who would like to have the name associated and support, it doesn't necessarily have to be the name of a dead person living people as well, my name's there and it happens to live as still part of it. And [01:10:57] we have a small service the to remember those whose names were engraving, if they have passed on, and to celebrate their lives and to honor those who want to show their support. So it's, it's really an important part, that we do that. So candlelight memorial and the circle of friends are two very real tangible ways in which we can surely say, honor, and I think those will go for many, many years, yet, I really do. We also have World AIDS Day. And that's the first of December every year. And in New Zealand, we identify a match with a street collection on the Friday preceding World AIDS Day, and that street collection the proceeds, or go towards the support of people living with HIV and AIDS. And currently, those proceeds are split 5050, between the New Zealand AIDS Foundation and body positive and it is a joint venture, the street collection, one in which we can surely say come together to raise as much as we can to use that money in a way that will support those people living with HIV. In areas they need to support [01:12:11] reflecting back Are there people in New Zealand or maybe not in New Zealand, but other people that you would like to pay tribute to as as pioneers in [01:12:22] this area? Absolutely. I would like to acknowledge Kate Leslie, the first chairperson of the AIDS Foundation, I'd like to acknowledge her to and her board members, my good friend, Helen, ivory, of course, and, and, and other members of the board at the time, but they also those who worked very much at the coalface Ray Taylor, and amazing character who's still very much involved in contributing in his way. Tony Hughes, who's now full time Professional Science offers Gates Foundation, the two people I most knew who were either identified with the AIDS Foundation and the voluntary capacity in the first stages on that, but so many who have come and gone who've made a contribution in any which way that they could they just too many to, to remember personally or individually, in that regard. But yeah, some amazing people. And I've been very, very, very privileged to [01:13:29] be blessed with with some of the memories. [01:13:35] What do you think will happen with with HIV and AIDS in the future? What do you think it will go? [01:13:42] I hope it goes the same way that that we've dealt with, say syphilis, or, or cancer, in that, I hope that we have further developed great treatments and ultimately vaccines and cures for this thing. And that will just simply become another another health hazard that we need to be conscious and aware of, and know how to avoid, but certainly know that when we do have it that we can treat it and ultimately curate. But I think that the education around HIV and AIDS still needs to be maintained as it will need to be maintained around any other health issue hepatitis as a growing concern, anal cancer, for gay positive manners and other frightening prospect. So seeing the normalization of it and seeing it being dealt for what it is, is just another health, a human health issue to be dealt with. And that that's a bad enough or enough to cope with without the hysteria of discrimination and stigma that I hope will ultimately be dealt with and move away from it.

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