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So, Michael, um, we're standing in a room now with, uh, approximately 100 and 50 panels from the New Zealand AIDS Quilt Project. Could you tell me a wee bit about the history of the project the New Zealand AIDS court developed from the one that started in America in about, uh, 1985. Uh, and, uh, it started there because people wanted a way that was significant to [00:00:30] them of remembering initially the hundreds of men and women and some Children who were dieing from HIV and AIDS related causes. And it seemed to be the right thing at the right time. It just caught on that, uh, virtually in certainly in the United States, Uh, particularly in the areas of San Francisco and L A and New York. It really caught on. So virtually everyone who died families, lovers, friends were making panels [00:01:00] up for them. Then they started to bring them together, um, as, uh, blocks of, uh, panels about 12 ft by 12 ft. And then, uh, they started to use significant days like World AIDS Day, which had been established as first of December to display them and, uh, also a bit later on the, uh, AIDS candlelight memorials, which were generally held in May. They would also use them then, [00:01:30] and the whole idea was not only remembering, but it was also to try to use them as what I'll call an education prevention tool so that people, by seeing these quilts, would think of the people that they stood for. Think they acquired this infection through choices that they'd made in some cases through no choice, simply because, uh, they had got it through a, uh, an infection of, [00:02:00] uh, blood transfusion before they realised what was happening. And in parts of America, of course, a huge drug injecting population and people were using exchanging dirty needles basically, and people who didn't know they had the virus were then passing it on. So they were used for that purpose, uh, as part of education prevention. And then a New Zealander called Bruce Burnett [00:02:30] was over in the, uh, states around the mid eighties when all this was starting to catch on and, uh, he became IV positive himself. And when he returned to New Zealand, uh, he gave the idea that we needed assistance. We needed clinics, and that was how the Bruce Burnett Clinic, for example, started and, uh, initially, [00:03:00] uh, a group of people in Wellington, uh, got hold of the idea with some guidance from Bruce of creating a panel. And so, in actual fact, uh, in 1988 a panel was created in memory of a gentleman called Peter Cuthbert so we can actually trace the New Zealand section of the quilt. Uh, it was called in America. They called it initially the names project. [00:03:30] Uh and then it developed the idea of the AIDS quilt, but later on. And so it's always been known as the AIDS quilt in New Zealand, Uh, from 1988 and gradually, uh, the number of people dieing increased, the number of panels increased. And so in the late eighties early nineties in New Zealand to create a memorial panel started to become what I will call the norm [00:04:00] for remembering. And, uh And so that was how it started. Was Peter the first person in New Zealand to be diagnosed with HIV or AIDS? Uh, no, he wasn't. Um uh When I first became involved in the work of HIV and AIDS in 1988 there'd already been a few deaths, and all I can remember hearing was that the first person, um, who died was [00:04:30] someone who wasn't even known until he had actually died. That it was HIV that had taken him. So in the mid to late eighties, how was HIV and a I DS, uh, dealt with in the community. How did people perceive that? Pretty negatively initially, Because apart from the ignorance of the fact people just didn't even know what it was. And it was seen to be this new scourge. [00:05:00] Um, because it was hitting in America. Uh, they are generally the gay population, uh, or, as it became later known, men who have sex with men to widen the whole concept of it. Uh, and of course, many of the what I'll call fundamentalist, uh, groups and religious sects and some major denominations, and certainly in Christianity I wouldn't know about the others. Just perceive the whole [00:05:30] thing as a curse and a scourge from God for the immorality of homosexual behaviour. The fact that they fairly quickly discovered that it would appear to have commenced in Africa among the, um, heterosexual population. And even to this day, Um you know, if there I couldn't tell you the exact figure, but I know it's well over 40 million. Uh, probably 80 to 90% of those are in, um, Continental [00:06:00] Africa, uh, where it's rampant through the heterosexual population. It's not a gay disease, but that was how it was seen in those early years. And so in New Zealand, for example, um, one of the first things that started to happen was a lot of the men who were succumbing, um, had come from Christian backgrounds and whether or not they acknowledged their [00:06:30] Christianity and and say in terms of church going and things like that, when it became they became aware that they were dying, their families became aware. It really heightened spiritual aspect, spiritual sense, and a number of them started to ask for church support. And it was around that time, 1988 that I actually became formally involved. [00:07:00] When in Auckland they started what became known as the Interfaith AIDS Ministry Network, which was a group of church ministers who came together to say people are dying regardless of what they're dying from. They need the support of their pastors. They need the support of their church communities. Their families need that support. So we have to show that the face of the church is going to be there [00:07:30] for them. And as I say when When I started, I was at that time a Roman Catholic priest only recently ordained. I'd been a teacher prior to that. And, um, I was, if you like the Catholic representative, we had, um, a Presbyterian, Methodist, Anglican. We had, in view of, uh, some of the, um, statements that were made around homosexual law reform. [00:08:00] Uh, we had a great contribution from a major in the Salvation Army because, um, he acknowledged I'm not saying officially on their behalf, but he certainly acknowledged that, uh, they'd made some errors in the way in which they spoke about things and he wanted on behalf of the Salvation Army community to say We're here to help. We had a Jewish rabbi, and at one stage, we had a Buddhist, wasn't a Buddhist monk, but it was very closely associated [00:08:30] with the Buddhist community. So it wasn't only a Christian group, it was an interfaith group. And even if, uh, we didn't have people say who were or Jewish or whatever dying at the time. It still meant that there were people available. There were people there for it. And so when people were dying, there were people being caught upon. And that's how I got called upon, basically one after the other after the other in the late eighties, early nineties. [00:09:00] At times, um, I would be involved with three or four dying people at the same time. And, um, it became difficult in the community generally, because what was happening was that, uh, we'd go from one funeral to the next. And, you know, you'd be at today's funeral and kind of looking around thinking who's will be next. And and at those times, of course, you had so many HIV positive men. Or as they more [00:09:30] often said, people, they use the term full blown AIDS in those days, um, which made it even more of a scourge. You were like a you know, something that was, uh, maggot infested. You were fully blown, which is a horrendous way of talking about it. But that's what happened. So, uh, we had that kind of situation where people just needed people, and, um, I gained a reputation for being someone who cared who came from a church. The Catholic [00:10:00] Church, which was pretty outspoken still in terms of its teachings, about not a homosexuals as such but homosexual activity. And, of course, very hard to, um, draw distinctions between the person and how they express their love and just saying no, no, that's all sinful, bad, all those sorts of things. So there were all those tensions, but, uh, overall, I found that, uh, I was, uh, hugely [00:10:30] accepted. And, um, I never really met a, um, an antagonistic and nasty person at all. I just cared for lots of great guys who were dying. Um and, um, help them through in many cases, was there at the time of their death and then conducted their funerals, supported the families. And today, up to 21 years later, In some cases, I still beat families in the street who remind [00:11:00] me of those days and, uh, yeah, so it was a positive thing that came out of negativity. The only negative thing I would say about the churches and wasn't surprising was that a lot of what were called the more fundamentalist churches would still deny that they had any members in their churches who were gay or sorry, homosexual. They wouldn't have referred to them as gay as such Generally. [00:11:30] Um, they certainly wouldn't have got AIDS because that was sinful. So, um, we do have we don't have any of those people, so they were never part of our interfaith network. So where did those people come to the ministers of the mainstream churches? Did you find that families denied either homosexuality or AIDS and HIV, for the most part? No, [00:12:00] uh, particularly the ones who were affected once, of course, their sons for the main, Uh, in some cases, there were husbands who became HIV positive, who were either known or not known to their partners as being a homosexually active. Um, and that was a big shock in some cases, uh, wives finding out they had husbands leading double lives. Um, parents finding out that they [00:12:30] had a gay son or lesbian daughter who didn't actually know. But as I've said before, because most of them were, uh, gay men. Uh, it was really men I was dealing with most of the time. Um, some parents were absolutely fantastic. Held their sons in their arms and cried and walked with them the whole journey. There were a few who didn't understand. Um, I never heard of anything really horrendous or [00:13:00] nasty. Um, I heard of the odd case where, you know, people said, Oh, no, we don't want anything to do with you But eventually they seemed to come around. Now, whether it was a social phenomenon or not, I have no idea. But the number of gay guys who were HIV infected who had a solo parent situation was quite interesting that, um there were a huge number of mothers and [00:13:30] sons and a lot whose fathers had been gone from their lives years before, rather than suddenly finding out they had a gay son who was HIV positive and taking off. No, that it just seemed to be like that. And that was, in itself, quite a curious thing. So a tremendous amount of the caring and support that went on in the gay community was from women mothers. Um, and they were in terms of the New Zealand AIDS quilt. [00:14:00] You know, you've only got to talk to the people who were there making the first quilt. You've only got to see photographs of them making them, and there were women everywhere. And, you know, if I had the time and, uh, all the names, I could say That's the mother of so and so that's the mother or the sister or the grandmother and that sort of thing. So do you think the the majority of, um, people that passed away had quilts made for them in the early [00:14:30] years? I wouldn't know if it was the majority, but certainly a high percentage. But when we think that we have in New Zealand about 100 and 40 of the panels, that's the individual memorials, Um, in total. And to the best of my knowledge, it's somewhere between 809 100 deaths in New Zealand. Uh, it's it's really only, um, [00:15:00] you know, a fraction of the people. And, uh, the reality is that the last panel that we received, I think, was created in the very early two thousands. Uh, so you know, it's, uh, seven or eight years since anyone's made a panel in New Zealand, not because we haven't continued to talk about it. It's just I think people have moved on. Uh, in the ways they remember, you know, And [00:15:30] nowadays, um, and this is why we're moving towards with our AIDS quilt. You know, as you've seen here, you know that they'd half fill a football field if we had every single one of them on display. Well, you just can't do that anymore. And for people who, uh, know, uh, the City of Auckland, for example, and know a square. Well, um, the AIDS quilt, completely spread out, fills the whole of a square. Uh, I think in one [00:16:00] occasion they were taken to parliament, and they fill the whole forecourt of parliament in Wellington, so it fills a fair space. So that's why we're actually now working towards the, uh, photographic record and the creation of a website which will keep the memory going which will keep the stories. And hopefully, um, we will be able to give people an opportunity to [00:16:30] create quilts. Um, in terms of the new technologies that we have that people can go online and gradually as a family or as an individual can gradually develop a quilt that can become part of the whole quilt project. So it's quite possible that we'll see a resurgence in the next couple of years. Once it all gets underway out of the 100 and 40 panels, How many of the guys did you know? Personally, [00:17:00] I would say probably about 60 to 70% of the ones on the panels we have. Um, and again, as I've said, that's basically through the huge amount of care that I was called upon to give, and I don't think it's a particularly good reflection. But at one stage, I was keeping a record, Uh, just of every single person that I met. Um and, um, it was something like 40% of all the [00:17:30] people I met, uh, were actually of some Catholic background. Now, they weren't coming to me as a priest at that time, Uh, simply because they were Catholic. It was just the fact that they needed support. And shall we say word got out that there was a priest involved in the community, so there might be a little bit of, um, skewing of the figures, from my point of view that there were so many Catholics simply because obviously, people [00:18:00] were directed in that way. But what, um, what has generally happened is that as with all things in this case, a sad but good reputation to get Was that, um I was able to care in ways that people felt were appropriate for them. So I got asked. Therefore, I can look at the panels of the quilts and say cared for him. Walk the journey with him, buried him, did his cremation service. Whatever the case may be in greater numbers than a lot [00:18:30] of others in New Zealand could. And when you think that, uh, you know, I well, I say there are about 100 and 40 panels. Um, I've actually helped care for and still care for some HIV aids related, uh, people who are still very much alive. Um, today and that's over 100 and 40 in itself, just me. And when again. There are a couple of 1000 HIV positive people in New Zealand. It's only [00:19:00] a fraction I'm not caring alone. There are others doing it, too. And families do. We can't forget that there are still families. There are still lovers, partners who who are caring and, uh, the the greatest challenge these days, apart from the sad one that more and more people are still getting infected and a lot of them so young, which doesn't kind of make sense. With all the education that we've tried to do, it just doesn't seem [00:19:30] to make sense. But people have to make their own choices, and they do. And so that's how it happens. But, you know, we've still got hundreds and hundreds of HIV positive people, but alongside that we've got new medications. And, uh, as I've mentioned to you when we've been talking about some of the panels that some of the people there, you know, not literally one week were told that they were HIV positive and dead the next. [00:20:00] But some it was a matter of two or three weeks or a few months or a couple of years, and they were gone. And I think there were two aspects to that one was that treatments were in their early stages, and also there was a kind of a what I'll call a psychological aspect to it, that because everyone was hearing about all these hundreds of deaths in America and to a certain extent in Australia, too [00:20:30] at that time that people thought there was no chance So instead of carrying on going to work every day and taking their pills, people would say, Oh, well, I've only got a couple of years to to live So I might as well enjoy myself. So they stopped working. They stopped doing. They almost became invalid without not denigrating the reality of their illness. But they almost gave up. Whereas now a lot of the people that I see and that I work with [00:21:00] have been taking pills for 20 years and you can meet them in the street and you wouldn't have the faintest idea they were HIV positive. Or they still go out and do a day's work because the medication lifestyle and all that. So we went through a whole generation, so to speak, of people who had to readjust. They sold their homes. There were there were men who were, um, selling their homes because they thought they'd be dead. So sell [00:21:30] your house, go and have a trip overseas. You know, prepare the funeral. And 15, 20 years later, they're still around. They had to, um, go and find a job again. They gave up work, expecting it would all be over in a short time nowadays, you could be working alongside someone living alongside someone who lives with HIV and A I DS every day. And unless they happen to get really sick, you would generally not even know [00:22:00] one thing that struck me looking at, um a lot of the panels was the guys. A lot of them seem to be, um, passing away in their thirties. Uh, this is going back to the kind of mid to late eighties. Uh, that would have been your generation. Thank you very much for for saying that would have been my generation, but in in the eighties, Um, you know? Yes, sure. Uh, it was, uh, the late thirties for me. Um and, [00:22:30] um, yes. I was seeing my peers dying and in some cases, caring for my peers dying, Um, walking the journey with a guy that I was in the same primary school class with secondary. We grew up together. We did everything together, so to speak, before he moved overseas, you know, and walking that journey, um, and then in later years, meeting up with people as a school teacher that I taught, you know, So even younger, [00:23:00] but no, that was one of the hardest things a lot of people found was, to put it bluntly, looking into the next coffin and seeing another young body. Um, and not everyone. Despite some of the horrendous pictures we saw, not everyone died looking like a skeleton. And of course, as time went on, too, and funeral directors became better educated and understood the whole disease because there was fear, [00:23:30] you know, even among funeral directors, that they couldn't dare treat a body or embalm a body or that anyone could see it after death in case they caught it. Then they started to be educated and realised that, Hey, it doesn't work like that. So we have there, I say the good fortune in the in the two thousands where a person can look as beautiful and death as they did in life. Um, sad though it is, you know, and, [00:24:00] uh, but to to look at one person after another in their thirties and think why very hard. And there were lots of couples around two guys you know who had formed a relationship. Um, I. I did several funerals Where, uh, guys in their early thirties had been together for nearly 10 years, uh, met each other almost in the night Clubs, Um, got on well together, flattered together, lived together And [00:24:30] then because, uh, many people had open relationships, one got the infection. Maybe never told the other that they'd been out and playing around, or both of them had been out and playing around, and all of a sudden they both just discover their HIV positive, and one didn't know whether to blame the other or someone else, you know? So there was that kind of thing happened, too, though again, amazingly, there weren't a huge number of relationships which [00:25:00] I found where people split up. You know, where one person became HIV positive and the other was still negative by some amazing gift of love, One to the other. People carried on together and cared for each other. And until death, are these, uh, panels still being shown in public? Not very often these days. And the the main reason is that [00:25:30] anything that's developed as the court panels are with, um, materials, uh, that are, you know, easily marked or perishable, and so on various linens and cottons, uh, that, as you've seen, there are some quite intricate things that have been put together, quite beautiful things put together. But in the very early days, people would put all sorts of things on these panels without thinking that one day [00:26:00] displaying them all around New Zealand and taking them to churches, um, schools, shopping centres, that opening and closing, moving them around, that they would get dirty and start to deteriorate. And then we started to to discover, and this was happening. You know, 15 years ago, probably when I was involved with a quilt quite early on was that, uh, we couldn't get them cleaned. We'd take them [00:26:30] to dry cleaners who'd say Sorry, Uh, if we were to clean that material, that one would perish or we can't do anything, we'd have to pull the whole thing apart and try to clean each little bit, so that's been a huge problem. That's been an international problem which has forced in most countries. It's happened in, um, America. It's happened here in New Zealand, happened in Australia, where they end up in some form of storage. Um, [00:27:00] and despite the fact that many countries and New Zealand is one where we look upon them as a national, a national treasure Getting someone to actually put them, Uh, for example, if you got a gallery or a museum that was willing to take them, they have their own rules and regulations about what they can do, how much of anything they can display. And we all know that, uh, you know, any museum [00:27:30] will tell you that, you know, maybe see, at any one time you are seeing 10% of its collection and they just keep rotating it. So that's another issue for us. If we put them in permanent storage in a museum or a gallery, people won't have the access to them. But now we can't give people the access either, simply because they are, in many cases, deteriorating. It's really the only times now that people get a look [00:28:00] at them will be, um, AIDS, candlelight memorial services, which are held in the third Sunday of May in New Zealand and World AIDS Day. Whatever day that falls on, um, where, uh, a panel or a block of them will be sent, you know, from Auckland to in or or wherever. When they are requested, we send them. But again, only a small number of people get to see them so that in actual fact is another [00:28:30] uh reason and gives us the impetus to work on this idea of a website because then once everything's recorded on a website, whether you live in Auckland, Wellington, Christchurch or in the middle of Africa and you think, Oh, I wonder if so and so ever had a quilt made in New Zealand, you can type in their name, and that will come if it's there. The quilt, the story that [00:29:00] lies behind it, the description of it, or if there isn't there will. Hopefully, there will be the possibility of creating virtual quilts in the future where friends and families could say, Oh well, we never had one made at the time. We were too sad or wasn't the right way for us. But now we could do it so that memorial will continue to to live, you know.
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