- Allan, Robert
- Allen, Jane
- Bernard, Kim
- Bigney, James
- Connors, Janet
- Frederickson, Bob
- Ganong, Mary
- Martin, Sangyé Chöga
- Martinez, Anita (with Eric Smith)
- Metcalfe, Robin
- Petty, Mary
- Richard, Brenda
- Smith, Eric
- Thwaites, Simon
The story that gets told is there was a support group that the other community group had going at the time – they were called MACAIDS at the time – of PHAs [Persons having HIV/AIDS] and they were talking about, “This is something we should be involved with. We want to advocate.” And they couldn’t find room to do it in that organization that had a different philosophy and approach in terms of the work. And so they said, “Fine, we’ll just form our own organization.” And I think they were emboldened somewhat by seeing examples of that elsewhere, so the Toronto PWA Foundation. Certainly they were familiar with some of the work in New York. So, I think they saw those models, had the experience of being shut down from the other setting and said, “Well, let’s just do this ourselves.”
…but people would come out of the woodwork and, you know, Nova Scotia’s an interesting place. Some communities it would work to have – and I’d always, not “let,” I always counted on the person in the community to advise where it should be, who you invite, all that good stuff. And I’d just kind of show up, and it wasn’t the kind of rigor with research like this… And we had some strange experiences, so the most closed, difficult places wanted to have these meetings in the most public places. So, it was kind of strange. I remember going down to Yarmouth and I have these phone calls before I got there, [whispers] “Can I meet with you? My brother is HIV-positive…” I had about four different calls and I thought, “Wait a minute. Either there’s an epidemic or there’s a family who all think they’re the only one that knows that their brother’s HIV-positive.” And the advice in that community was have it in the middle of the Pharmasave, and I was like, “Ok… sure.” And I could see people not joining, but staying a really long time looking at dental floss, but listening. And then a lot of time they would contact you afterwards. And then, yeah, it’s just showing up and being open to whoever and whatever is going on at the time. A lot of church basements or, as I said, transition houses, places like that.
From what I remember, they saw a gap and realized they couldn’t do it themselves. So, they figured they needed to hire somebody from the Black community. They didn’t know the community so they had to hire somebody to get in there and do the work. They figured we’ll just let that person take the lead, and we will provide as much support as we can. I believe that the Coalition saw that there was nothing being done in the Black community around HIV and AIDS education, awareness, information and that there was no support for people that have identified as being HIV-positive. I do commend them for recognizing that as a problem in our community and a gap. Then they got a grant to hire somebody. It’s a typical thing, you only have one person, so when you only have one person trying to cover all of the Atlantic provinces. That can be challenging. And that was really it. So, here I was hired in this position, but there was nobody else to work with me. So, I’m the only person that is supposed to be representing the Black community and to provide awareness, information, and support services. And so it was a…
AS: No problem! [laughter]
KB: Thank you! I got this, right? [laughter] Really, I’m thinking, are you kidding me? So, I just kind of rolled with it, because there was not much I could do. So, that’s when I developed the board of the Outreach Project, which was made up of people from the community.
I’m glad that what I was helped to contribute to pushing forward the laws and mores in Canada to embrace the gay and lesbian and transgender, and anyone else that wants to throw themselves in there, community. And, I said, “I’m glad to have been a part of that,” but I told myself I came out for the second time at 45, because I couldn’t hide. There I am, photographs in the paper. I mean there wasn’t a day and some days I just thought, “God. I wish I could turn this off.”
But, I don’t know what an activist is supposed to do. I don’t know what… The first time I heard someone refer to me as a gay activist, I went, “What’s that supposed to mean?” I just think I did the right thing. It’s like—I wasn’t at any marches. I didn’t throw eggs in anyone’s face. I was part of that scene where Wilson Hodder, he was doing his thing. Janet Connors was a spokesperson for the “tainted blood” thing. And I used to talk to Wilson about this as an activist. I said, “You know, up to the time that the disease infiltrated the straight community through bi-sexual men or the blood transfusion or the blood system,” I said, “At that time they wanted to take all the gay people out and burn them, shoot them, put them on islands the whole bit. But it wasn’t until the straight community started experiencing these things that, like, “Oh my god!” So, the attitude toward it changed a bit.”
…But the one thing with Randy – and with pretty much everyone else in the world – if you can give them the actual information they need to make a decision, they pretty much will always make a decision that is in their best interest. So, you know, he wasn’t being given the information he needed. They were telling him what to do, and he wasn’t agreeing with them. They weren’t telling him why, or “Here’s the research.” So, around that time I started doing a lot of research. Like, bookcases full of books on the immune system. I was still working in the microbiology lab, so part of my job was putting away medical journals. So, I was reading The Lancet, The New England Journal of Medicine, I was reading all the journals that were coming into the microbiology lab. So, I was learning a lot. I was learning a lot about upcoming treatments, and other places to access information as well. When I went to the AIDS Coalition, I think in terms of the disease and treatments that were available at the time, I was pretty well-informed. Especially within the hemophilia community, there were very different side effects. I discovered, quite by accident, that one of the early treatments could cause esophageal bleeds. Randy was on that drug, I was like, “Oh my god, he’s going to have an esophageal bleed.” And sure enough, he had one. Prior to that, just nobody – the hemophilia clinic wasn’t making the connection with the HIV meds, and the HIV clinic wasn’t necessarily making that connection with hemophilia as a disease. All though they certainly knew about it, just that connection wasn’t there. So, I was already – even before I went to the Coalition – having other hemophiliacs from across the country calling me and saying, “Well, they’re suggesting I go on this,” and “What do you think about that?” Again, I guess it was a kind of activism that I was doing. To me it just felt like, “Well, I kind of have the time and I can read this stuff, so that’s what I can do here.”
Well, one – AIDS is a fascinating, fascinating disease. I mean, because it’s so multi-system, you know? And it requires a whole re-study and re-kindling of whatever you learned in medical school, the panoply of stuff and that takes a lot of extra work. I mean I was fascinated. It’s a fascinating, fascinating disease. And I went into medicine because I was fascinated by disease. So, that part was okay for me, but I mean for a general practitioner who’s had a group of people who were, like at Gladstone they’re calling you on the carpet if they don’t see 60-70 people a day, because they’re not doing their fair share for the corporation. And then you go home and you’ve got all this stuff to read, you know? They can’t do it! And so nobody wanted them. And they made it fairly obvious. And just in terms of closing their practices or whatever, and doing interviews and stuff like that. So anyway, it became more and more isolated as time went on.
Sangyé Chöga Martin
I think the first action was the die-in, and at first, it wasn’t… I don’t even know if we had pre-planned the die-in. It might have just come up as we were going up the street, because I don’t think we had a right to be in the street doing this action at all. And the first interaction I remember us having – I don’t even remember where we left from, we probably left from Rumours – but when we hit Spring Garden Road and we just came up from the library where there’s a Second Cup now, at that intersection, I think we had a die-in at that intersection first. So, the idea was that we would interfere with traffic and then a few of us… I was one of the people that was going to go around handing out some information that we had about AIDS and how we needed more research, and all that sort of stuff; and it had to be taken seriously and it was that it wasn’t just a gay disease. And I remember walking up to this car and the look on this guy’s… he started rolling up his window; he was terrified. He’s like, a father with his wife and some kids, I think. I mean, at the time I was sort of, an angry, rebellious teenager still, but I just kind of scoffed at him. I just remember being pissed off by it, you know, but at the same time almost kind of laughing about it – at the level of stupidity. Because even though I didn’t know anything, I knew it didn’t make any sense that this could be something that was just a gay disease. That concept just didn’t make sense to me just because of my evolution and understanding of how I accepted being gay, right?
Anita Martinez (with Eric Smith)
Once I got there the first time, as soon as I walked in… I walked in with my camera and started taking pictures with Craig. And not because I wanted to, I had my camera and he was there. And that might’ve been what I was in there for because somebody wanted something documented, I think, or I wanted to document the issue. That sounds more likely, because it was pissing me off, some of the comments and stuff. So, I wanted to, you know… “Don’t make any decisions or judgments until you know.” So, I had to go and I had to say, “What can I do?”
We often don’t value the body nearly enough in politics and realize how vital it is. Walking in your first demo is such an important experience because it’s a physical experience. You can think about it, you can articulate ideas about it, but actually going in the street and presenting yourself and declaring yourself to the buildings and the people around and claiming the space is a physical activity that your body never forgets. It never forgets that feeling of freedom. “I can do that.” “Why would I want to do the other?” It was like that with the dancing. I found myself in a place I’d never experienced or even imagined, and for me it was actually ecstatic, and the closest thing to a religious experience I’d had. It was community, because it was done communally – it was very much a collective space, and I danced best in a group where the group is dancing. Where you’re creating the dance floor. And we created the dance floor, which was free for people to do whatever. You could form a line; you could dance by yourself. You could start flirting with somebody you don’t know and then break off after a point and go somewhere else. It was a collective space and it was physically and emotionally and spiritually transformative. And taking our shirts off was like – if you used a religious metaphor –a sacrament. I don’t want to get religious about it because it’s not about a theology; it’s about an actual experience.
I mean it sounds cliché but it was a privilege and I was aware of that then. You know, and now when I look back I keep thinking about how young I was. So, I was still capable of moving back and forth and to, you know, be excited about other things in the community – being a lesbian and the community being young, and all that stuff. So, I was able to juggle those things, whereas there were points later on, you know, when I was older and it was a lot harder to have any sense of fun or joy. But then it was really intense on both sides so, yeah. It was important, I think. I wouldn’t give up any of that experience. And I think about that support group a lot even though, you know, I can’t remember their names. But that was just kind of amazing when I think about it now. The group that I have here are… I think because it was based here and it was run by social workers, it continued as people left and died. The group just kept going and it’s now a long-term survivors group. And when I sit with them today I think about that group, and just about what everyone who survived went through. So, being my age and being the same age as the guys who are long-term survivors is really poignant—in thinking about those times and that shared experience because there are not that many people still around. In this clinic where I work today, I’m the oldest person. I’m the only person who has had any experience that goes back that far. So, it’s me and the patients here who share these memories.
And then, I believe another woman came, so now there were two women on the board. And at that point, people began to realize, “Wait a second. There’s a whole group of people out there that are impacted that have not been considered. Are afraid to come forward.” Because everyone was afraid to come forward and say… they were HIV positive… So, then the medical information started coming out that, of course, women were experiencing the illness very differently than men, so there had to be a particular emphasis on them. So, some might have wanted to say, “Oh well, we’re all in this together.” Well, we weren’t quite all in it together because by the time the women came forward, as you know, they were much closer to their end stage, unknowingly, because they had been diagnosed so much later.
Well, basically the two groups took two opposing views or two different ways of dealing with people and neither group was right for everybody, which makes sense. MACAIDS – they did AIDS 101 education. They were very good at… I don’t want to oversimplify but it was sort of, “Come in and have a cup of tea. Tell us what your problems are. What’s making you feel down and can we hold your hand?” The Coalition was more, “Okay, you’ve tested positive. Let’s go through your crisis. What questions…?” Everybody involved in the Coalition originally was HIV positive, so you’re talking to somebody who’s gone through it. Okay. After two or three weeks or depending on the person, once you’ve got over the crisis and you’re okay, it’s, “What can we help you do living with AIDS as opposed to how can we help you die with AIDS?” That was basically the philosophy. And again it sounds strange when you think of in those days AIDS and sickness and dying, but I mean, at times it was almost a carnival attitude. There might be someone off in the lounge who had just come in with a new diagnosis who was crying, somebody else in the next room telling jokes that, well I probably wouldn’t want my mother to hear but, it was just really vibrant. And that was basically the philosophy. I mean, that was what was worked out. The first meetings of the people involved in the Coalition, as I say met sort of on the floor in people’s apartments, and it stemmed from what was going on in my case.
So, that was kind of interesting but when I accessed the files – you send off your paper, it goes up to Ottawa, then the officer in Ottawa usually goes to a junior ranking guy and says, “Here. Take his file. Delete all this stuff out. Put in this and then send it back to him.” Well, the person that they told to photocopy my file was a friend of mine from Halifax. It was just one of those weird coincidences. He was a corporal. So, he kind of, I think, let one or two pieces slip that should’ve been blacked out. And one of the most, I think, incriminating things that got through was on the corner they had handwritten notes. On the corner of one it says, “This guy’s going to die soon. Just put him off into the, you know… He’ll be dead,” which is like, they actually were saying that? It was interesting because anyone who didn’t know me had this impending doom and gloom thing. But if you looked to the people who I worked with, like, my ship or wherever, I was, you would have all these like great recommendations. Like, wonderful, flowery, “Oh wow. He’s a great guy” kind of stuff. But as soon as I became just a name and a number, then it was like, “You’re written off.” And it was interesting as the years have gone by, I’ve seen that so many times that once you lose the personality, the individual, and you become a statistic, that’s it, you’re gone.