Interview with Rick Waines

17-12-20-RW.docx




“HIV in My Day,” Rick Waines (December 20, 2017)

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HIV in My Day – Interview 19


December 20, 2017
Interviewee: Rick Waines (RW); Interviewer: Ben Klassen (BK)

Ben Klassen: Just sitting down this afternoon with Rick. Thank you so much for agreeing to do
this and share your experiences of the epidemic with us. We’re looking forward to hearing your
story. I guess maybe to set the stage a little bit, when were you first hearing about HIV and AIDS
and what was that information looking like at the time?

Rick Waines: It was – it was probably between – the summer between grade ten or eleven, or
eleven and twelve. I don’t exactly remember. What I do remember is that the Canadian
Hemophilia Society let me know that there – or probably my parents – that there was a bunch of
hemophiliacs, a bunch of hemos, that were going to travel across Europe to the World Federation
of Hemophilia meetings – I think it would have been ’82 – in Stockholm. So, my parents sent me
and I basically got on a train in London with – I don’t know – fifteen or twenty other guys with
hemophilia and a couple of chaperones. I was chaperoned by a fellow by the name of Scott who
was a fraternity president from Baton Rouge, Louisiana, and I thought this was pretty cool. And
he knew how to make gin and ton- - no, gin and sevens, and I had my first adult drinks in adult
environments as we hurdled across Europe to this conference in Stockholm. I remember arriving
in Stockholm, getting off the bus and walking across – I was really into photography, I had my
camera. Walked into the park and as a post-pubescent but not quite sure about this whole
sexuality thing kid, I walked across into the park whereupon I saw everyone on their lunch break,
only all the women had their tops off, because I guess that’s what you do on lunch break in
Stockholm. And I was, you know, again as a fifteen- or sixteen-year-old kid away from his
parents and away from North Delta for the first time, I was just like, “Oh my gosh, I’m not in
Kansas anymore.” So, it’s that context…

The very next day we were at the opening plenary and a doctor by the name of Bruce Evatt, he
gave the opening address and he said – and I actually was so curious, years later I got the trans- -
I got a recording of the transcript. At this moment I forget exactly what he said but the gist of it
was, “There’s this new opportunistic infection. It’s called GRID – gay-related immune
deficiency. We’ve already seen it in a couple of hemophiliacs and we expect it to be a significant
issue and mortality – and the mortality rates are very high.” And I remember looking at Scott
who was two seats over and looking at him and going, “I don’t think that’s very good news.”
And so, for me, just as someone who’s done some writing, and thinking about those two realities,
you know – looking back at myself at fifteen being sort of this sexual human and then the very
next day, in essence, being told I was going to die was a very… very jangly, you know. Like, it
was very – I knew it was a big moment and yeah… I guess that’s the best answer that I have for
that.

BK: That’s a very early juncture at which to be learning about – and not just to be learning about
it, but learning “this is going to impact me.”

RW: Yeah, it seemed – it didn’t seem that there was any room for avoiding this. Looking back
and listening to the recording, the speech that he gave, it wasn’t like he was – I mean he was





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giving a very measured, even, not hysterical talk on what was – what they were witnessing. But
however he said it, it was very clear to me anyways that this was not, as the first of chapter in
Angels in America – this was not good news. This was bad news. Yeah, so that was… that would
have been it.

BK: Not fast-forwarding but moving on from that initial point, was that something that was…
We hear a lot doing these interviews that gay men were immediately tied to HIV, GRID before it
was even known what the cause was. Was there a lot of information that followed that initial
news that continued to tie you to the idea of what HIV was?

RW: Yeah, I mean, so the hemophilia community was in complete shambles as a result. And I
think that our doctors and nurses were doing the best they could [laughs], but it was a mess.
There weren’t… The only information I got about HIV and AIDS between that – between like
’82 and ’87, really, when I was diagnosed would be what I saw on television. Our doctors
weren’t really talking about it and in fact I wasn’t tested until ’87. Obviously, some people were
having conversations about it because there was a decision made with my parents and my
doctors, I guess, that I should be tested after I graduate from college so that I guess I would get
through that without losing my mind or something. It seemed a bit of a risk. I wasn’t having sex
with anyone. I don’t know whether they knew that – I don’t know how they would have, but it
seemed a bit – it seems a bit bold. But I think everyone – and I’ll probably say this a hundred
times – everyone was doing the best they could with what was, in both the gay community and
the hemophilia community, a giant calamity, right? So, it was like this disaster that you can’t
always – I think you can’t always expect – I don’t think you can expect everything to run
according to plan… Or, with hindsight I don’t think we can expect that things are going to be
handled the way they should be, because people are scrambling and it’s not something that
people are prepared… We weren’t prepared for that – certainly in the hemophilia community we
weren’t prepared for this.

BK: What did that community look like? We’ve heard a lot of insight on what the gay
community looked like, but I know a lot less about what the hemophilia community looked like.

RW: Yeah, the sketch would be a little bit like this. Until the late-‘60s – well no, even further.
Until the mid-‘70s, the only – we had to go to the hospital every time we would get a bleed. And
until – and to back up a little bit, until the late-‘60s, that treatment wasn’t particularly effective.
So, there was a lot of bleeding, a lot of disfigurement, a lot of mobility issues, a lot of death. So,
the hemophilia community until the mid-‘70s was a very tight community where… I remember
going to, like, pool parties where it was just everyone in the Lower Mainland who could manage
to get there, all of the kids and all of the parents, and we’d all get together at the Dayton’s house
and have a pool party. And the parents would try and figure out what the fuck they were going to
do with this really difficult disease. And then homecare came along where we were able to infuse
at home. So, in the late-‘60s they learned to fractionate blood so that meant that our product
became a lot more – it worked a lot better. And then in the mid-‘70s, we were allowed to take
that product home so that we could do that at home, which was fantastic ‘cause it didn’t disrupt
your life as much. You could infuse sooner, so that you wouldn’t have as much bleeding into the
joints, and less bleeding and less pain. But at that point, the community started to disperse a little
bit because our – hemophilia wasn’t really a culture, it was… Like, the gay community is a





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culture. The hemophilia community is a disease. If my life here with this disease has taught me
anything, most folks, once they got their basic needs met, are going to be less likely to need to
commune over that. And so, as our treatments got better and better, the community became a
little bit – a little bit more fragmented. There’s still – today, there’s still lots for us to figure out,
but it wasn’t as tight as it was in the late-‘60s and early-‘70s. And then, of course, they learnt
how to take that fractionated blood product and pull it apart even more and freeze dry it. So, then
we had something we didn’t have to keep in a freezer and we could travel. Before it was IV pulls
and plasma and saline and, you know, an hour of hijinks. Now, it was these two little vials and it
mixed in four minutes and you put it in your arm, and blammo.

The problem of course was that in order to make it – like, when I was getting plasma, I would get
donated blood from one or two or three people at most. To make this fractionated freeze-dried
product, they would take a thousand donors’ blood, put it in a big vat, spin it around, freeze dry
it, and then I would get my portion of it. So, what that meant, obviously, was that if one person
in that collection had HIV, then everybody would get that product – everybody that got that
product, which would be thousands of doses, would probably get HIV. And that happened. And
so, what that resulted in is that ninety percent of us who were severe – had severe hemophilia –
ninety percent of us became HIV positive, virtually everyone. In my group, I know one guy who
managed to avoid it. So, at that point, the community went… You would think – you might hope
for a re-coalescing of that support. Not so. People went further underground and I think probably
the… Well, first of all, there’s just the trauma – that, “I guess we’re all dying.” So, there’s that
and I don’t think we can undersell that. But the hemophilia community was no more or less
homophobic than the community at large, so I think – well, I know – that at the time none of the
hemos I knew wanted to be associated with HIV because that meant you were associated with
gay people. And so, that just drove everything further underground and created for me an
untenable situation. It wasn’t how I saw the world. I grew up in the same homophobic world as
everybody else did and I can’t proclaim that I was without all homophobia because I don’t think
it’s possible to avoid it, regardless of your sexual orientation.

But I knew that in order to survive, I couldn’t crawl under a rock and I didn’t really see any good
reason to not associate [laughs]. Probably the best way to put it was that my parents didn’t
reinforce our culture’s homophobia. I don’t think of my family as being super progressive or out
front of any of these issues, but they certainly didn’t reinforce any of those societal problems like
homophobia. So, I think I just realized that in order for me to survive, whatever that meant, I
needed to reach out to people who were being proactive. And it was very clear from watching the
news between fifteen and twenty-one, it was very clear who that was [laughs]. That was gay men
with HIV. And so, I first of all wanted to be open about being HIV positive, so I started talking
about that within the hemophilia community, which I was discouraged from vociferously by
pretty much everyone, except my parents – they were good. To stop short of going too far down
the road, it’s safe to say that the hemophilia community went – in general, went as far away from
the issue as they could, to the point where it was clear to me… It was clear to our clinics who
used to take care of all of our medical needs, not just the hemophilia stuff, because we were
seeing them so regularly, you know, if you had something else going on, you’d just talk to your
doctor about it. He was handy, he was right there. And they understood, I think, that they needed
some help on this one – it was a little above and beyond. So, I was sent to a doctor to – you
know, for him to handle my HIV care. I knew right away that – well, it took me a while to do





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anything about it, but I knew right away that this was a problem, that he was figuring this out on
the fly like I was figuring this out on the fly. And I didn’t want to be with a doctor that had like
two patients with HIV – I didn’t think that that was a good coping strategy. So, I found help
within – again, within the sort of gay HIV doctor world. But to sort of just finish the thought on
the hemophilia world is that they went one way and I went another.

BK: And that was because there wasn’t a sense of that community being able to provide support
on that particular issue?

RW: Yeah, it seemed like if I wanted – it seemed like if I wanted to die alone, that that would be
the thing to do. And I didn’t. I wanted to die with people. [long pause] It wouldn’t have been
alone. I would have had my family, of course, and in some ways I would have had the guys. And
I don’t want to paint all of my brothers with hemophilia as a bunch of homophobes – they’re not
but our culture is. So, I would have had them as support but it didn’t seem like a very… I just
knew instinctively that that wasn’t where I was gonna survive, and I don’t mean live. I think I
just mean, you know, be around people who were being courageous about it… And that doesn’t
sound right either, because a lot of hemos were battling. But I just wanted to be around people
who were open about it and the hemophilia community in general wasn’t – that much I can say.

BK: And by 1987, the gay community had been mobilizing around the issue for…

RW: Yeah, years.

BK: … you know, five years already, so of course that was where the support was.

RW: They were the people in the streets and I wanted to be – I wasn’t sure where I wanted to be,
but I didn’t want to be in an HIV closet. [Laughs] I wanted to be out of the closet and they were
out of the closet. My mom used to say – we’d be watching the news. I think the very first
candlelit vigil in San Francisco we watched on the news because it was on every channel of
course – all six of them – and she said, “I wonder if we’ll be marching with them one day.” And
it was before I had been tested but we all knew what was coming. And it ended up being one of
those moments, you know, that you don’t forget.

BK: That’s pretty amazing that your parents had that…

RW: Yeah, I’m sometimes a little hard on us. I sort of wonder whether the comment should have
been, “We should get in the streets with those people… [laughs] regardless.” But considering
where we came from, yes, I will agree that it was amazing. And I don’t ever want to be hard on
my parents. They’re fantastic.

BK: One obvious difference to me as you’re telling this early part of your story is that for gay
men very quickly there was this idea that we can do things to mediate the risk of getting HIV.
We can – well, eventually it kind of coalesced around the idea of safer sex…

RW: We can not use poppers! [laughs]






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BK: Initially, yes. [laughs] Then it slowly became, “Well, we can use condoms.” There’s not
really an equivalent for…

RW: Yeah, that’s one of the tricks for us for sure was that there wasn’t a way out and you knew
it was coming, and if you used the blood product with any regularity, you were going to get HIV
– there wasn’t – and Hepatitis C and Hepatitis A and B – well, not A but B. Everything. And
there wasn’t a way to get around that because the not taking it wasn’t any solution either. That
means you – at the very least crippling pain and long-term – you know, the kind of joint damage
that would get you into wheelchair and get you dead. I mean, hemophiliacs before there was any
treatment died very young, so there wasn’t a way… there wasn’t any way to mitigate those risks.
That being said, I don’t know whether it was Saskatchewan or Manitoba – one of the enlightened
provinces – one of the hematologists in one of those provinces said, “I don’t know about this
fractionated baloney,” and he kept a lot of guys on plasma which meant that the transmission
rates in that clinic – and I don’t know whether it was one clinic in the province or the whole
province – doesn’t really matter – that clinic had much lower rates of transmission.

BK: That’s very interesting. Not something that a person in your shoes has any control over.

RW: No, and it wasn’t – I remember once getting a phone call from the clinic saying that there
was a recall on our product. I don’t – only I’d already used it all. And I don’t how all that – yeah,
I don’t know anything about that recall, but that sort of symbolized a little bit what it was like.
We all knew that there was – on some level, we all knew what was happening, but there was
nothing to be done so it wasn’t… We didn’t think there was anything to be done and so what do
you do? You just – you just wait – you just wait to be told you have HIV, really.

BK: What was that like, that period of knowing but not knowing?

RW: I think I had fairly, relatively – so, I’m sixteen, seventeen, eighteen, nineteen. I’m – I think
I have fairly strong coping slash delusion mechanisms at work. I don’t remember those years as
being… I remember it would – you know, the idea would rise up from time-to-time when we
would see the marches in San Francisco. Or I remember, funnily enough, when the first shuttle
crashed, I remember sitting on – next to the television watching that and on my way to school,
college and thinking… Just that portent of disaster, I remember that, really. And that was
probably just months before I found out. So, it would rise up from time-to-time and of course
you would hear about other guys who were getting it. I don’t know who had been told, but it was
very – it was very… There wasn’t a lot of communication about it and if you were going to learn
something about it or if you were going to cope with it, it was going to be by your own effort. In
those years, I think my efforts were directed toward just being a teenager and putting it
somewhere else. Yeah, I think I put it somewhere else for a couple years.

BK: Were hemophiliacs talked a lot about in the news around HIV as a “risk group?”

RW: Yeah, Ryan White of course was a thing. And then the brothers – I just looked this up as
well but there was another two brothers who were from Iowa, Idaho, who had their houses
burned down.






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BK: I remember that story.

RW: Yeah. So, that kind of thing. Again, I don’t really remember – again, ‘cause everyone went
underground – we weren’t going to the Daytons to hang out at the pool anymore, so any time I’d
bump into guys would be at the clinic maybe and that would be kind of in passing. We would all
have known about the kids having their house burned down. We all would have known that this
was happening on some level, but I think that every family dealt with it kind of in their own way
and there wasn’t a lot of – yeah, there wasn’t a lot of communal commiserating about it – not
that I remember. And that was my problem was that I wanted to talk to people about it and I
didn’t have that opportunity.

BK: It’s interesting to me to think that hemophiliacs were being identified consistently in media
as being at-risk and yet so much of it ends up tied to gay men anyways. The stigma attached to
gayness somehow seeps over to these other risk groups that aren’t at all associated with…

RW: I know it was – yeah… Again, that was the problem that the hemophilia community was
having was that they didn’t want to be associated with the “gay plague.” And that isn’t how I
saw it. But it is curious that – I guess that our society in general wasn’t – first of all, I think that
they were afraid because in the first decade, of course, it was terrifying. I think of it a little bit
like – I’m not really a scholar but in the early-1900s, opium in the Downtown Eastside, you
know, Chinatown – that was no problem until white women started getting hooked on it and then
the shit hit the fan. So, I think of it a little bit like that in the sense that as long as that dirty
plague stays with gay men, everything’s groovy, but once it starts to leak out, then people get
their knickers in a knot. And maybe hemophiliacs represented that in some way. I think people
were just afraid – afraid. And people have always been afraid of gay men, so I think it was easy
for our culture to just – anybody that had that “gay disease” was a threat.

BK: I think there might have been some degree of a difference in conception between “innocent
victims,” right, and gay men who are not innocent victims.

RW: Yeah. And I spent ten years touring with the BC theatre and my principal message to the
kids I spoke with was dealing with that. How I – despite the fear. So, I mean, this is what I
experienced was that everyone was telling me, “Don’t tell anyone. You’re gonna… It’s going to
be a problem.” No one said, “Your house is going to get burnt down,” but that was the
underlying message, aside from the fact that you don’t want to be associated with gay men – that
classic, regular old homophobia stuff. But once I started talking about it and being open about it,
I realized very quickly that I wasn’t being treated like gay men who were exposed to HIV. I was
the innocent victim and that made me – that, I knew, made me insane. What I mean is that made
me crazy because it wasn’t at all how I saw it. I didn’t see – I very adamantly didn’t see myself
as innocent of anything. I was HIV positive like everybody else was. All of us were doing
exactly what we need to do to be human. For me, it was, you know, infusing a blood product. For
someone else, it would be infusing heroin. For someone else, it would be having sex. Myself
personally couldn’t rationalize any difference in those stories. I understand that there are some
technical differences but I don’t really see… I don’t really see expressing your sexuality as being
an option, so I never really saw it as, “Well, you can just not have sex, or you can just do this or
do that.” I didn’t – I couldn’t wrap my head around being an innocent victim. I wasn’t. I





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certainly wasn’t victim either. I was just a guy who got a bug, like everybody else. But yes,
definitely the world around me saw me that way.

BK: Had you had any interaction with the gay community prior to HIV?

RW: Yeah, none – I don’t think. I mean, there would have been the odd kid at school that,
looking back, I knew – I now know, “Oh, right. Of course.” But no, I don’t think – no. There was
one but I don’t know if I met him before I found out. There was one hemo I knew – one
hemophiliac who was gay but I don’t know if I met him before I knew I was HIV positive. So, in
short, no.

BK: Did that diagnosis change the way you felt about all of this or was it kind of like, “I knew
that was coming?”

RW: It was a very… So, the diagnosis was… So, college was done and at the stroke of me
getting me diploma, I became super sick with what was probably my seroconversion. And then
right after that I was tested, and it was time to get my test results. We all knew what it was
probably going to say, but my parents had said, well we’ll go down next Wednesday or
something. And I said, “No, I’d like to go on my own.” So, I went in the morning and my parents
went in the afternoon to get the news. And I remember the room like it was yesterday. I
remember my hematologist sitting behind his desk. I remember the little weird paper note holder,
woodpecker thing that I’d been playing with since, you know, I was four, on the desk. And he
just said, “Well, let’s get right to it. You’re HIV positive and what that means is that you can’t
have sex… without a condom,” I think he said. Yeah, he said, “You can’t have sex without a
condom.” That was it. [Laughs] So, I remember at that moment it just felt like we all knew this
was coming. Like, immediately there was this giant – well, I guess you could say an elephant in
the room – but it was this giant stone that was immediately kind of over my head or in the room
or above me. You know, there was immediately this presence that wasn’t there before even
though it was very clear – this was no surprise, but the fact that he sat there and told me brought
HIV into the room and it became a physical presence in my life that… yeah. That I knew was
going to – that I knew had the potential… And I don’t mean just dying – I knew that it had the
potential to kill my spirit, like to kill me before I died. I knew immediately that if I didn’t address
that giant thing in the room, I was going to die. And again, that didn’t mean that I had any
illusions that I would be fifty-one and sitting in this room, but that it would destroy me.

And I remember I had a little sports car at the time – a Scirocco – I remember driving home way
too fast with the music turned way too loud and just kind of… With this… Another thing and a
recurring theme, and I think it’s kind of a classic – there was this white noise too that
immediately became a part of my world in those kind of catastrophic moments, if you will. Sort
of this really loud, silent thing. And maybe the music was trying to tune that out. So, I just drove
around and met up with my folks for dinner at home. And my father looked up from the mashed
potatoes and said, “We’ll just get through this like we’ve gotten through everything else. We’ll
just get through it.” And at the time I just thought, “What an idiot.” You know, like, this isn’t
like fucking anything else. This is the end. But of course, years later, I realized it was… what
else can you say? “We’ll get through it.” And somehow we did. I wish we could say it was
because of anything we did – I don’t think it is. I think we got through it because I got lucky. I





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mean if there’s sixty-four reasons why I’m still alive, fifty-nine of them are about just luck. And
yeah, that was the first day, if you will. Yeah, life was very different after that. It couldn’t –
yeah. Like, yeah… A whole different reality. And I knew immediately that I needed help of
some form. And I knew where it was, but I didn’t really know how to access it.

BK: So, how did you get connected to that support?

RW: Yeah. So, this super amazing executive director of the Canadian Hemophilia Society at the
time – his name was Bob Scheer [sp?], Robert Scheer… still close – we’re still close. He – I
don’t know why he picked me… maybe… Well, I guess I do know. I was the only hemo that I
knew of that had spoken publicly about being HIV positive and I just did it at a local chapter in a
little room, but I’m sure he was told about it. And so, he invited me to come to the Montreal
Conference in ’89. And there, because he knew Alex [Kowalski] and Don [deGagne] and Pei
Lim and these guys, he introduced me to them at the conference and that was my introduction to
PWA.

BK: That was a big conference. There were some interesting things that happened there. What
was it like being there?

RW: It was amazing. I knew immediately – I mean none of these… It’s not like I can look –
well, maybe I could, but I don’t really feel like I could open up a journal from 1989 and I don’t
think it would be filled with realizing the importance of 1989 in my life, but I knew immediately
when I met Alex and Lim and Don, and a fellow from Brazil, Herbert Daniels, I knew that I was
home in a way. You know, like these were men who were fighting… and I wanted to fight. So, I
felt like I’d found my people. Even though they weren’t my people, they were, clearly. And so,
the conference is super exciting, right, because ACT UP is there…

BK: Yeah, and the Manifesto…

RW: Yeah, it was fucking awesome. I didn’t have anything to do with it, but I did bring home a
poster, the ACT UP poster that Keith Haring had built, and I met a couple of the guys from ACT
UP. That, for whatever reason – I mean, because I got hooked up with the PWA guys, that ACT
UP activism… I didn’t fall into that crowd, for whatever reason, but I did fall into the PWA
crowd which was doing their own kind of activism but just in a different way. And Alex and Don
and Lim were so kind to me and so welcoming that I knew that was where I wanted to be. And
so, virtually every day after that, that’s where I was. I don’t know if it was seven days a week – it
felt like it. Starting out at the Bute location and then down to the Hornby location. I didn’t really
spend any time at the – was it the Richards location? Even though… Yeah, we’ll get to there.

BK: Sure. What was it like for you walking into that space?

RW: Yeah, I was terrified a little bit because again I didn’t really know anything about this
world. I knew I had to be there, but I didn’t really… So, there was also things bounced around
my head. Like, the obvious one was, “Does this mean I’m gay?” [Laughs] Because none of my
other friends, none of the other guys with hemophilia are here. What does this say about me and
my sexuality? Is that why I’m here? I knew that I wanted to – I knew that I had to be there. It





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didn’t matter whether I was or wasn’t, I needed to be there. And I think… well, I know that the
leadership of PWA at the time needed me to be there too, because they recognized very early on
that the world of HIV was a lot – I don’t know if a lot bigger is the right word to use, but was
larger in some way than the gay man’s world and that I represented someone else with HIV that
seemed to be ready, willing, and able to join them in that struggle. And so, I was terrified but I
was very well taken care of and soon learned that while I would – you know, being twenty-one
and – that there would be a sexual energy around me, being moderately attractive and young and
HIV positive and ready to go. But that everyone was, despite – not despite… I never found that
attention a problem and it was always very fun. I never felt – I just felt at home, right? And
people wanted to know for sure whether I was straight or not [laughs], it never felt
uncomfortable, it only ever felt… Well, it was uncomfortable for me because I wanted to –
needed to understand what this meant about my sexuality if anything, so sometimes I might have
been uncomfortable, and I guess sometimes some of the other guys might have been
uncomfortable, but it never felt uncomfortable. It was my home. I didn’t want to be anywhere
else. Wild horses couldn’t drag me away from there.

BK: And you were the first hemo…

RW: First hemo, first straight kid that I know of in Canada that jumped in. Yeah.

BK: What did the support that they offered look like from your perspective? What would that
community feel like or how did it look?

RW: I think probably the biggest thing for me was just – it may be a worn-out cliché, but just
being in the trenches with people, like facing it together, dealing with the DMC – dead man’s
clothes would come in in garbage bags, it seemed like every day – being heartbreaking, but it
also being fun. Like, “DMC. Here comes more DMC!” And there’d be some categories: DMB –
dead man’s boots; DMS – dead man’s shirts. And we’d all go through them and, “Oh, this looks
good on you.” And, “Oh, this is fabulous. You should take that.” And some people recognizing
clothes. “That’s John.” So, super hard but super constructive as well. Like, how do we deal with
this? Let’s make it a game. [Laughs] Which is a bit dark but it was coping, and it felt – it didn’t
feel disrespectful. It would have felt disrespectful to just send those clothes out the door
somehow. So, just – I mean, there was lots of practical things. For example, I started going to
conferences, learning more about my disease. I met an amazing doctor who I called up one day
and said, “I know we’re just pals and we hangout occasionally at these conferences, but I need a
proper HIV doctor.” And he said, “It would be my honour.” You know, so he was my doctor
until just a couple years ago and he retired. So, things like that.

In fact, there was another doctor downtown, Dr. Mc-… he was a “skin guy,” so he got involved
early on because of all the KS and hairy leukoplakia – I’m forgetting his name right now, it
doesn’t matter. I saw him once right early on because I had hairy leukoplakia and he wanted –
people wanted to determine whether that was what it was. So, he saw me and he said, “Yup,
that’s hairy leukoplakia.” And then I saw him fifteen years later or something and he’s kind of a
gruff guy. I wish I could remember his name, he was fantastic – Alastair, I want to say Alastair
McLeod – I don’t know that that’s right. Anyways, he’s retired now too of course. I walked in
and it was some wart stuff, and someone sent me to him, and he said, “You know why you’re





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alive, right? Don’t you?” I said, “No. I’d love for you to tell me.” [Laughs] He said, “Phil
Sestak,” who was my doctor. He said, “You didn’t handle it like any of those other hemos. You
found a guy like Phil. That’s why you’re alive.” [Laughs] And Phil is a big – if there were sixty-
four reasons why I’m still alive, Phil is definitely one of them. I think it might be over-
simplifying it a little to say that’s the reason I lived. I still think fifty-nine of those reasons are
just dumb, blind luck, but I wouldn’t have had Phil if I hadn’t gotten involved with PWA – I
wouldn’t have met Phil, he wouldn’t have been my doctor, I wouldn’t have known where to go.

I also did a lot of, in those first couple years… well, that first year, I did a lot of art therapy at the
Bute office and that taught me a lot. I think, you know, being around all of those guys while they
were going through it – like, there were the dead, there were the dying, and there were the “next”
– and you know very clearly where you were on that spectrum if you were involved at all, and
there was no notion of being anything other… Like, the best-case scenario was being, “You’re
up next.” There was never a “Gees, I wonder if…” So, to be able to look into your future, if you
will, as terrible as it was, it was important to know what that was like. Yeah. So, I think those
were some of the… And also to be – I mean, just to be actively involved in trying to make things
better, like trying to get the drugs covered, to get somebody to pay for AZT – it wasn’t… We
would all walk home from the pharmacy at IDC with these big – well, we’d get them in the mail,
nice big fat bills for the drugs we were taking. So, we were also rolling our sleeves up and doing
things, and that always makes one feel better. Those were some of the things. And just also
learning about… I think… So, I went from being a young, straight kid from North Delta who
didn’t know much about the world – was open to learning about the world, but I didn’t know
much about it. I learned about the world. I learned that gay men get beat up on the way home
from bars. I learned about what happens to women. I learned about all these things. I learned
about racism. I learned about sexism, homophobia. I learned about that stuff there because it was
all part of the same problem. And so, I wasn’t someone who was going to grow up to be a part of
the alt-right, but I don’t know if I would have ended up with the worldview that I do have, which
I am very fond of, which is that we’re all in this together, so let’s row. PWA and those guys
helped me with that.

BK: That sounds like a profound shift.

RW: Yep.

BK: And also…

RW: I don’t know what you’re talking about. This interview is super easy. [Laughs] A walk in
the park.

BK: It’s not something that people talk about in their day-to-day lives.

RW: Yeah… Writing about it has been good but it’s different from talking about it.

BK: Absolutely… Part of becoming involved in that community was also, it sounds like,
rejecting that notion of victimhood. You know, feeling like you’re doing something to create
change or…





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RW: Yeah, this was going to get us, but we weren’t going to – we weren’t going to – it wasn’t
going to be a passive event. [Long pause] There were things we need to – I mean, I guess at the
end of the day, we were all hoping to survive. We knew we weren’t going to, but the human
spirit is dedicated to survival, so I guess at the end of the day, while none of us expected to, we
were all trying to. And in order to do that, you needed to – there was some shit that needed to
change or we weren’t going to… That’s what PWA was about. So yeah.

BK: So, it was support but also this kind of activist-leaning…

RW: Yeah. Yeah, well PWA first and foremost was about that activism. I mean, an activism that
for us meant working… Well, at first of course, it meant acting outside of the – without a seat at
the table. But you know, after ’89, there were seats at the table that began to open up for people
that were directly affected, and we wanted to be at the table, so we were. And that was important
to be there, to have that say, if you will, to try to make sure that we had a – that while there might
not be a – so that there might one day be a chance for someone to get out alive. [Laughs] You
know? I mean, I don’t think we ever lost sight of the fact that you know it might be that things
change one day and the only way they’re going to is if we get some fundamentals sorted out. So,
that’s I think what we were all trying to do.

BK: And was there a lot of sharing of information around treatment?

RW: For sure. Yeah, lots of… And everybody was, yeah… Lots of newsletters about what was
going on in the world of research and lots of talk about how people were coping with all the
different infections – you know, like CMV or PCP or… And lots of debate about AZT and all
the drugs that came afterwards. But at the end of the day, I think that for me, I guess… Well,
here’s the thing. I think that we all had different roles and different things that interested us.
There were the guys who were just neck-deep in the research and the meds and supplements, and
the latest treatment for this and the latest treatment for that. While I – what was important for me
was to be elbow-to-elbow with people trying to take care of each other and be – support each
other emotionally and do the work.

BK: How did your involvement there develop over time? Did it shift a lot?

RW: Yeah, I think that because I was personable and represented something specific that I was
pretty quickly asked to be on the board. So, I became part of the board in – I was looking it up
the other day – oh it’s probably in my book… it doesn’t really matter – ’88, ’89, something like
that. Oh no, it would have been ’89 because it would have been after Montreal. So, I would have
been a part of all of those discussions that happened in the board and also involved with
advocacy. And then the speaker’s bureau became something that I was super excited about. I
liked – I liked talking to people about it, I liked trying to tease apart the “innocent victim” thing
for people, so I did some of that, and eventually was sort of the chair of the speaker’s bureau and
the chair of advocacy for a while.

BK: What was the speaker’s bureau exactly?






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RW: So, it was just a group of us with HIV who were part of PWA who would go out to mostly
schools, I guess. A request would come in. Or sit on a panel at some event. And there was a
training that we went through and we went through other people. It was largely – we were
largely responsible for trying to communicate with people about just the nuts and bolts. No one
knew – like, how do you get HIV? How do you not get HIV? What is it? AIDS 101 stuff, mostly.
And then Alex [Kowalski] died – well, Alex was dying and he asked me over to his apartment,
which was the first time I’d been there. It’s interesting, in writing this memoir I’ve been doing a
lot of thinking of the time I spent with these people who were super important to me, like Alex
and Lim in particular. And first of all, the time that I actually knew them before they died was,
you know, like twenty-four months or something, but if you had asked me how long was it, I
mean, hpw it felt was forever. But our time was mostly spent at the office and at conferences so
we were never – weren’t often at each other’s homes, although the whole office came out to my
parents’ place for my twenty-second or -third birthday I think. That was totally awesome – out to
North Delta. I was still living at home, or I had moved out and had moved back. So, all the men
from PWA met in my parents’ living room. It was totally awesome.

But this day was the first time I’d been to Alex’s apartment and it was barren. Like, I think he’d
been getting – well, I knew because he’d given me some stuff, but getting rid of everything. He
was dying, he was in a wheelchair at this point. I hadn’t seen him for a few weeks because he
was… And he told me that he had some kind of – I don’t remember what it was now, but some
kind of peripheral neuropathy thing going on, but it was out of control and he couldn’t walk
anymore and that every morning he would wake up and more and more of his – like, the
deadness, if you will, the lack of feeling would go further and further up. And he told me that
when it got into his chest cavity that his organs would start to cease to function and that’s when
he would die. And he said that he didn’t anticipate that being too far down the road and that he
wanted to know if I wanted to be chair of PWA, president of PWA. And of course, I said yes.
I’m not sure that it was the right decision. [Laughs] But when someone who has meant as much
to me as Alex did asks you to do something, then you just do it. I think I imagined that I could do
the job. I don’t know – I think I had a couple of moments where I did the job, [laughs] but I
ended up being a bit of a disaster and I ended up leaving before my first term ended. It was a bit
of a sour ending and heartbreaking and sad, and in a sense, I never went back. I mean, the guys
that I was closest to died and that was kind of the end of my PWA life, which is to this day a
little bit heartbreaking and I really miss that world. But I think that world is in many ways gone
anyways, a little bit like the hemophilia world, right? Antiretrovirals and everything’s fine.
[Laughs] So, we’re all back to our life. And I don’t know what it’s like at PWA anymore, or
Positive Living, but I know I miss what I had there.

BK: So, altogether that was a three- or four-year window or something?

RW: Yeah, three-ish I think. Yeah, three, four, something like that.

BK: Very formative.

RW: Never be the same.

BK: It provided you with the support that you really needed at the time.





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RW: Yeah. Yeah, and then I fell in with this theatre company and that provided a lot – a new
chapter that helped me to, you know, get through the next ten years.

BK: Well, I definitely want to talk about that, but I’m just going to stop this for one second.

[End of video 1, 1:03:15]

BK: So, we were just talking about how you – after leaving the PWA Society, you started
working with a theatre company. What did that look like?

RW: So, before I left PWA I think, we got a phone call from Green Thumb theatre – they’re a
theatre company in Vancouver. You’re probably aware of them. They do theatre for young
audiences and have done since 1970-something. When I was involved, they were interestingly
enough the largest theatre company in Vancouver, in the Province, and that is just I think a
function of having three or four shows on the road at one time. They were – they wanted to
address AIDS in some way and this was ’91 or [199]2 or [199]3 – somewhere in there. So, they
commissioned Colin Thomas to write a play. It was called… I just had this because I was
looking it up the other day. I forget it… anyways. So, that’s kind of an interesting story. Colin
wrote this really interesting play. It had two men kissing in it. Green Thumb was like, “It’s all
good, but we’re not going to be able to get this into schools (in 1991). It’s not going to happen.
Like, we don’t have a problem with it, but we have a problem with it. Can you rewrite that?”
And Colin was like – at least in my memory of it – was like, “Nah, ain’t going to happen. This is
the play.” And so, they paid him for the script and then hired Morris Panych to write another
script. And Morris wrote – and I should be very clear, Colin’s script was fantastic and Morris’s
was as well.

It was called The Cost of Living and it was a sort of coming-of-age story, a little bit of Brighton
Beach Memoirs meets Ferris Bueller’s Day Off. This young kid in high school gets asked by
social studies teachers to write a report on the cost of living. He figures two things: one is a
picture is worth a thousand words, so he’s going to make a video presentation, so he gets himself
a camera; and that the cost of living is like about what it costs for clothes and food and that kind
of thing. So, he goes out in the world and the first interview he does – well, he interviews his
mom and his dad, and then he meets a woman at the library, an older woman – well, two years
older, and he falls in love. And just a lot of slapstick hilarity ensues, but also this – he’s going –
he figures he’s going out on a date with this woman and he’s going to lose his virginity, that’s
what he thinks is going to happen. And of course, that brings up all sorts of things about
condoms and his mom, and again more hilarity, but she – so instead of… So, he picks her up for
their “big date” and he thinks they’re going to go somewhere and have sex, but what she does is
she takes him to the hospital and introduces him to a really close friend of hers who’s dying of
AIDS in the hospital, and he’s left alone with him in this room and just has a melt-down. And
then has a melt-down with her and she tells him to take a fucking leap ‘cause you’re being a real
moron. So, he has this, you know, coming of age moment where he sees that the cost of living
isn’t about these things, it’s about living and dying and fucking things up. You know, a nice
story. So, he’s giving this video presentation to the class, which is the audience, the school
audience that we would go to. And there was a big rack of television screens behind him and





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he’s working VCRs and tape cassettes and filming Barbie dolls, and there’s also two big
mannequins – it’s amazing.

So, they had this script and this show and they were about to do a little mini Lower Mainland
tour just to test drive it if you will, and so they wanted… And Green Thumb almost always has
the actors come out after the show to take questions from the kids. They felt like this one was a
little over their head, you know, given the time and the place, and so they wanted – they weren’t
quite sure how they were going to handle it, so they wanted to have someone from our speaker’s
bureau come out and watch the show and see if we had any thoughts. I’ve always loved the
theatre and so I was like [raises hand], “Sign me up. I’m coming.” And so, I went and saw the
show and just fell deeply in love with the script and the message and the fact that it wasn’t about
AIDS really, it was just about being human. So, that meant something to me. They didn’t know
quite what they were going – how they were – they thought maybe the best thing to do would be
just to have the play do its thing and then a week later have somebody following and doing
follow-up with the classes. And I was like, “No. I’m going with this. [Laughs] I need to go with
this.” And I think everyone was a little nervous, myself included, because the play is amazing
and it wouldn’t take much for some idiot to get up there an wreck it, right? But they were game
to try it out. So, I went and it was very different than being asked to come to a school to do an
AIDS 101 thing. This was – a lot of little doorways got opened up in these kids from the play
itself, so it was a much more open, spirited space, if you will. So, I felt like the AIDS 101 thing
wasn’t what I wanted to do. What I wanted to talk about was the way we treated each other.

And what I also realized pretty quickly is that the very first question I was always going to get
asked was, “How did you get it?” And what I realized that question was, was first of all, A) are
you gay? – and therefore this is how we’ll know how to treat you. I don’t mean to suggest that all
high school students are little hate mongers, but our culture was set up at the time with that
innocent victim, not innocent victim – guilty party scene. And so, like clockwork, every time,
first question. I spent a good long time setting up the space before – like, so the play would end, I
would come right out and say, “Hi, my name is Rick. I’m HIV positive, and here’s what I need
you to know.” You know, the Cole’s Notes version is: “It’s really important to be open and
honest and I’m never going to lie to you about anything, and no one is going to get a hard time
about their question.” So, I think – but I took five minutes or so to set that up. And so, I think –
well, I know that by the end of that, people were feeling ready to go, you know, because the play
had done its work and I had done my work, and so I think they were feeling safe enough to ask
what they really wanted to know. What they really wanted to know was, “How’d you get it?”

And so, I would – and that was my – one of my favourite things in the world because it gave me
the opportunity to talk about those things and how we treat each other different based on how we
got the virus. And I would spend probably another seven minutes answering the question, never
once telling them how I did get HIV. So, sometimes kids would just stop me in the middle –
“Would you just tell us how the fuck you got it?” And I used to wear this funny vest that was a
bit clown-like with different colours swirling around, and one kid one day said that, when
someone said, “Will you just tell us?” another kid said, “He’s gay! Look at his vest.” So, I took
them on a bit of a trip, you know. Like, look, if you’re gay, you did it to yourself, you asked for
it. If you – this is how our world looks at you. If you use needles, better off dead, you know. And
then if you get HIV through a blood product, you’re an innocent victim, everything’s fine and





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you didn’t do it to yourself, and “What can we do? How can we help you?” And after all that I’d
say, “I got it through the blood system,” which they weren’t expecting because of the way I set it
up. I think it just allowed me to address that thing that was so important at the time, which was
that we need to treat each other better than we are, and I’m not an innocent victim. And then of
course questions would go on from there.

So, we did that first tour where I kind of had to negotiate with schools everyday how much time I
would have, because they weren’t planning to send it out with a “me,” but after that first tour
went so well, I was part of every other tour after that. And we toured across Canada three or four
times, across the States once, and across Scotland once too. And it was like seven tours over ten
years, although six of those tours were probably over five [years] and then there was a bit of a
break, and then one last tour. And it was – yeah, a great experience. I got to do the work with,
you know, thousands and tens of thousands of kids, and talk about that thing that meant so much
to me, which was that you needed to treat each other better. And I got to talk about guys like
[name] who I used to go to art therapy with who didn’t show up one day, and I thought maybe
he’d died, but he then showed up a few weeks later and looked like he’d been hit by a truck.
[Name] didn’t die, [name] was beat up on the way home from the bar. So, I got to tell the kids
those stories that were from my experience as a straight kid from North Delta like ninety percent
of them were. So, I’m one of them, except for the three kids in the class who were gay and they
loved it because I was on their side and that was empowering them. So, as someone who was just
this straight white kid from North Delta, I was able to say, “You know what, this is fucked. We
have to change that.” So, that made me feel really – like I was giving something back to the men
who had given me so much, and had a great time doing that.

BK: Yeah, that’s a very unique but very powerful advocacy role to be in.

RW: Yeah. I feel like it was probably some of my – well, probably my best work. [Laughs]
Some of the stuff I’m most proud of anyways, that I didn’t get stuck in the AIDS 101 thing,
because that wasn’t really – I didn’t see that as being much of an answer to what we were going
through. And obviously still feel that learning how to – like I said earlier, learning how to row
together is probably more important than learning about how the virus is transmitted. That
doesn’t hurt either.

BK: They’re both useful.

RW: Yeah, they’re both useful. [Laughs]

BK: Yeah. And such a powerful way of challenging stigma around the epidemic.

RW: Yeah. It just felt like the only thing that I could – at that point, the only thing that interested
me at all was trying to get in these young kids’ head… You know, because one of them is going
to be the guy that ends up in the West End on a Friday night drunk with his buddies and things
get out of hand, and they beat somebody up, not because they’re terrible humans, but because
things got off track. And maybe some of them are terrible humans [laughs], but one or two of
them were going to be able to be – maybe see it – understand the “other” as human, so that’s
where the stories… Every question would trigger a very specific story from me, so it wasn’t





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exactly a question and answer, it was question and story that I’d sort of build to try to get at those
things.

BK: How old were the students that were seeing the play?

RW: Yeah, between grades eight and twelve, although we did do a few runs in theatres where it
was open to the general public, so sometimes older audiences, but it worked best with grades ten,
eleven, and twelve, because the themes are more in line with what they’re actually going
through. But it worked fine with everyone, it just seemed to hit the right note with a little bit
older kids.

BK: Well, it is interesting that talking about using condoms and talking about sex, in vague
terms probably, that’s okay. But two guys kissing – no way!

RW: Yeah. Fascinating. Both Green Thumb and Colin were dead right. There was no way Colin
should have rewritten that script and what Green Thumb needed to do was to get in there and do
the work. Both of them were kind of stuck. But yeah, it is super interesting. Although, it should
be said that in Arkansas, it was not okay what we were up to under any terms. [Laughs]

BK: And you went there?

RW: Yeah, we were in Arkansas. We got ready, we rolled in for the first show. On those bigger
tours, we would set up in a theatre and schools would come to us, and we said as we rolled in for
– I think that day, we were going to do a public performance that night and then schools would
be coming the next few days. But we realized when we got there that things weren’t going to be
going as planned, because there were like four people at the show. Three of them were the staff
from the theatre – like, all of the people from the theatre – maybe there was five, I don’t know.
And one guy who was the youth pastor from the church in town and they had put the kibosh on
anyone coming to the show, so no one was going to come. And he came just to sort of have his
suspicions confirmed, because he’d heard all sorts of funny things about the play, none of which
would have – he wouldn’t have had any of those suspicions confirmed, but he saw enough to
know that it wasn’t for his community. So, we didn’t do many – we might have done one show
during that four- or five-day stretch there and then moved on. It wasn’t always like that. Mostly,
it was pretty good. Yeah… Arkansas.

BK: That kind of work, was that something that really felt like it was sustaining you? Is that one
of your sixty-four reasons, too?

RW: Oh yeah, probably. Again, the things that were within my control, that contributed to my
survival, take up, you know, four percent of the pie chart. I don’t really believe in – I mean,
people always used to say, “Positive attitude has really helped you, and Dr. Sestak and the fact
that you didn’t hide.” And I knew lots of really brilliant, positive, fantastic, strong men who
didn’t make it. So, it’s not me. I got lucky. I had some random DNA luck. That’s the only reason
I can imagine… Those other things didn’t hurt, but those alone didn’t mean anything I don’t
think, at least in my experience they don’t.






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BK: But it certainly would have helped to sustain – you talked about your spirit. It would have
helped to sustain that.

RW: Yeah, and I think that’s part of the trick in the post-dying guy years – part of the trick is
finding out how to feel like a contributing human, you know. Like, those years, from ’88 to ’98 –
yeah… I felt – first of all, I knew I was dying and I knew I was involved with an important thing.
And then after that, when it started to dawn on me very, very slowly – well, first of all that HIV
started to lose its… grip on society, which is probably a good thing, but it also meant that a lot of
us – and you’ll hear this time and again, you probably already have dozens of times already…
those of who lived inside of that for all those years were all of sudden now kind of – at least how
I felt – a little bit without a purpose. Because I graduated from photography school and was told
I was HIV positive and a career meant nothing, because I was going to be dead. What meant
something to me was, you know, PWA and doing school touring. So, when that was all over, I
didn’t really have a career, I didn’t really have anything. And… Learning how to live became –
like, dying – being the dying guy, while terrible, was also technicolour and beautiful and vibrant,
and any day that you woke up was – without some terrible thing happening in your body was a
victory. When all that started to wane in the late-‘90s, I started to have a hard time understanding
where I fit. I probably still do, I guess because, A) nothing’s going to sort of match that in
intensity, and I wasn’t – I mean, I didn’t prepare myself in any way, shape, or form for surviving.
So, that’s been – I think it probably gets easier with time, but it hasn’t been easy.

BK: Does survivor’s guilt factor into that at all or is that just a different thing?

RW: Yeah, I don’t know. I’ve heard of this thing called survivor’s guilt. I don’t know. I don’t
feel guilty. I feel lucky, but I have felt lost. And I’m not… [long pause]. Yeah, I’m not sure if I
understand that – I mean I think there are – and it could be quite possible that I don’t understand
what survivor’s guilt actually means. What I think of it meaning is feeling guilty that you made it
while others didn’t. I don’t really – and what does that imply? It implies you did something
wrong, which implies you might have done something right somehow, like, to make it that you
didn’t share with others. And I don’t believe in any of that garbage. I just think that I fucking got
lucky. And so, I don’t really feel guilty about it. I miss people terribly. I wish they had gotten
lucky, but they didn’t. So, I think just having that – an incredible world wrapped around you for
as long as it was and being so very clear about what my role was on the planet, and then that kind
of evaporating was a challenge.

BK: Because as horrible, awful as the epidemic was, it did give you this sense of purpose or
meaning.

RW: It sure did for me. There was no question about who I was and what I was doing. Yeah.

BK: So, the theatre…

RW: And I was young enough when it happened that I hadn’t established myself as an anything.
I was a straight kid with HIV who was working in the world of AIDS but had nothing – I wasn’t
formally anything. I was just someone rowing the boat.






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BK: Whereas, if you’d been at a more established point in your life, you might have had
something else to go back to.

RW: Might have gone back to that if I felt like it or maybe if I had… It’s all silly, but yeah. I
mean, I don’t think it’s uncommon for any of us who went through it to feel a little lost
regardless of what you had going on before HIV came along, so I don’t know that that’s a
particularly good crutch for me to lean on that because I was as young as I was… But I think in
my story, it did have an impact on – it did have an impact on my life as someone who… I felt
really good about myself when I was doing that work and then that work went away, so your
identity kind of goes with it in some ways. And I didn’t – I mean, I have found ways to feel like
I’m a part of this world and not lost, but I’ve never found anything that has replaced that. And
that’s perhaps a – it’s not probably really realistic to have those kinds of expectations, but I’m…
yeah. It’s a little – it took a long time to figure out I wasn’t going to die and by then you’re like
thirty-five and even then you’re not quite sure. And then you’re forty-five and you’re like, “Huh,
I guess HIV isn’t what’s going to get me.” And I’m forty-five and something is going to get me
that has nothing to do with HIV. I thought I was prepared for this and I’m not. [Laughs] I was
more prepared then when I was going to die as a twenty-four-year-old, because there was
nothing to be done about it. And now I’m here and there’s nothing to be done about it again, but
it’s all just so mundane and just getting old. And that’s really boring. [Laughs] Not nearly as
exciting as dying at twenty-five from the great pandemic.

BK: Yeah, if you were living with the expectation for ten years that death was an inevitability,
that’s not something that just goes away.

RW: No, it took a long, long time for me to wrap my head around that… And I guess I have
wrapped my head around it. I mean, for whatever it’s worth, I am going to die and HIV might
play a role in it, you never know. But it doesn’t seem that I’m about to expire anytime soon, so I
can presume that I may well live reasonably close to a normal life-span. And yeah. I guess in
some ways, and it may sound a little melodramatic, if nothing else, I’m pretty glad that… You
know, that old chestnut, a man dies three times: one, when his heart stops beating; two, when
he’s put in the ground; and three, when his name is spoken for the last time. I’m super stoked
that I get to, you know, say Alex’s name once in a while and Lim’s name once in a while – that’s
more or less enough.

BK: That’s very powerful.

RW: And this project will help with that. Like, I think that stuff like this, for people like me will
likely – I hadn’t really thought about this but will help create some closure around that as well,
that if there’s a record that there’s some way that you can contribute to that story that isn’t going
to be lost, that’s meaningful. It means something.

BK: The speaking of names is such a – and it was part of the vigils, it was part of the memorial
we have at Sunset Beach – it is so powerful.

RW: Yeah, it’s nice to go down there and see the names of the guys you remember and
remember people that you had forgotten. Yeah, that’s really good. And I guess at the end of the





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day, there’s always going to be a lot of people who are just forgotten. Did you know that Gaetan
Dugas has a cherry tree planted for him down by the Bayshore? “Patient Zero.” He lived in
Vancouver – you know that probably…

BK: I did know that, yeah.

RW: … And – I don’t know whether it was the incarnation of – an early incarnation of PWA or
AIDS Vancouver maybe… It might have been AIDS Vancouver. They wanted to memorialize –
this was before Gaetan was “Patient Zero” and he was just a guy who lived in Vancouver for a
while and died, and he was one of the first men in Canada to die of AIDS, and so they wanted to
plant – it was three or four trees in the names of those first three, four, five – I forget. Yeah, so
there’s a bunch of cherry trees down there. I took a picture once and I probably have it
somewhere, but I think I found it through the city archives, so it is possible to track them down at
some point. Yeah, things like that are important. I always thought – I really should do this one
day, but there’s this hilarious, amazing of Gaetan on a swing set. You’ve maybe seen it. He’s in
fantastic tighty-whitey shorts and his flowing hair and his moustache, and he’s on this swing.
And I had it in my mind, and I’ve never done it, but I thought it would be beautiful to make sort
of a poster on cardboard of him on the swing and hang it in one of those trees. [Laughs] I never
did it, but… anyways.

BK: After you left PWA, where were you finding support, because you were involved in this
theatre project, but that wasn’t support so much.

RW: I guess it was. I mean, I think that was the only place I was getting it, and I think where I
was getting it from was the people I was working with on that show and the students who would
– were more or less unanimous in their affection and thanks. And I would get – I’ve got, you
know, piles of letters that I would receive that they would send to Green Thumb theatre after the
fact. That kind of stuff just meant a lot to me. And occasionally, like, I remember being on a
beach on Hornby and this woman walking up to me and we got introduced and she went, “Wait a
minute, you were at my high school and I was gay – well, I am. I just wanted you to know that
that meant a lot to me.” So, those sorts of things were important and helped. But it’s true that I
didn’t have those men in my life anymore – largely men. Of course, there were… I didn’t have
those people in my life anymore, so that was missing and is missing to this day. I don’t know
why I haven’t found that – I don’t know why I haven’t found that world again. I don’t know
what that is exactly about. I guess at the end of the day, it just kind of feels like it’s all over, and I
don’t know. I do think about trying to find some – like, I’ve – on social media and joined the
HIV long-term survivors group. And it’s not the same, and it probably never will be the same,
you know. And I remember leaving and coming to Victoria – I just moved here a couple years
ago. And I think there was such sort of… I also moved away to a small little island for ten years
and just – yeah, there wasn’t anybody there, but it was a good kind of – its own kind of a
medicine. I guess maybe trying to learn how to not be dying guy anymore and live a life. Yeah.

BK: I also don’t know if there is programming or groups that are focused on just long-term
survivors.






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RW: In the States, there’s a few. I don’t think there’s any up here yet. And it seems like the peer
support world has become bifurcated in a way – that’s not the right word, but that the groups I’ve
read about are explicitly for gay men with HIV. While there may be other groups – it’s funny, I
identify more as a gay man with HIV than I do as a hemophiliac or an IDU, and so I haven’t – I
feel a little like I’m back on the outside and there isn’t really an easy way back in it seems like.
I’m not sure that that – I want to leave room for my own sort of pathologies to have affected that.
I don’t want this to all be about me being left out, but I think part of the story is that the world
with HIV became so much more than – so much bigger than gay men in the West End that those
folks needed a place that they could call their own again. And so, I get that, but it was also the
only place that I ever really felt at home in a sense, as well.

BK: I have a hard time imagining that you wouldn’t be welcome back into that.

RW: I know but I’ve always just felt a little funny about saying, “I’m not gay but can I please be
a part of your support group?” And maybe it would work fine. I imagine if I met someone who
was part of one of those groups and there was some kind of a way in that… But I’m also the kind
of guy that when I read “for gay men with HIV,” I don’t want to be the guy that’s crashing the
party or being – I’m not really pushy in that way, probably to a detriment. They’ve put that in
their description for a reason, so I’ll leave it at that.

BK: When you were at PWA, did you see that shift in who was getting HIV? Was that
something that you were seeing?

RW: And we’re back to my indecorous exit.

BK: You don’t have to talk about that if you don’t want to.

RW: No, I’m okay with it. I’m coming more to terms with it. But what happened – so, we knew
that there was – we all knew, we’d known for years really that there was a great many people,
especially in the Downtown Eastside that were sharing needles and getting HIV, and they
weren’t getting the services they needed because they had their own challenges getting into
doctors, their own challenges getting treatment, and their own challenges… Like the
hemophiliacs, no more or less homophobic than anyone else. Also, PWA, aside from me, was
populated almost exclusively by gay white men from the West End and as an organization we
were trying to come to grips with that. And it was very complicated because, as you can imagine,
a group of people who have been dehumanized and ostracized and oppressed have finally found
these places to call home – like, the village and the West End and the Castro. And then through
that empowerment came HIV, so they closed ranks again and lifted all of us up. But the culture
of that is very different than the culture of an IDU from – someone who’s using needles from the
Downtown Eastside. Very different culture and not necessarily a culture where people are going
to feel comfortable. And also, that’s not the people at PWA’s problem to make other people feel
comfortable. On the other hand, if we’re – if we were the Vancouver Persons With AIDS
Society, it was also our job to try to move towards somehow welcoming – anybody who’d walk
through that door would have been welcome. I was. But there wasn’t something quite lining up.






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So, when I first became president, I did this interview for Xtra!, which is based out of Toronto,
and they said, “What are your goals for PWA?” And I said, “Well, one of my goals is to make
sure that Alex’s dream of the one-stop shopping, which was the Pacific AIDS Resource Centre,
came to fruition.” And my other goal was to make sure that PWA becomes that – the Persons
With AIDS Society and not just the gay white man from the West End of Vancouver Persons
With AIDS Society. And that – let’s just say that didn’t go over super well, and I totally get why
and I wish I had found a different way of communicating that. It was the truth but there would
have been sixty-four other ways to say that that wouldn’t have come across as, to some,
homophobic. I – if I know anything about myself, I knew that I grew up in a homophobic culture
and there’s always going to be stuff to rinse away. I also know that the same thing can be said
about – a lot of the gay men I knew came to love – we all have to work that out. And that was a
poor choice of words but it didn’t mean I was a homophobe, but it did to some. And so, there
was a group within the organization that decided I was a homophobe and I was in control of their
organization and that they needed to do something about that.

So, we had this [laughs] – so, we decided as an organization to undertake a review of how we
operated. And at the time we operated that the chair, the president – the buck stopped there. So,
we went through the process of deciding that each chair of each department should have
decision-making powers. I thought that was a fucking great idea. But halfway through this
process, somebody came up to me and said, “You know why we’re doing this, right?” “No,
we’re doing this because we want to have a more accountable, a more productive, you know,
organization.” He said, “No, they want to get all of the power out of your hands right away,
because they think you’re a homophobe.” So, I was super sad. I don’t know if super – I don’t
know… It was heartbreaking. And so, I sought the council of dear friend. I said, “I don’t know
what to do.” No one had ever – no one talked to me – well, Don deGagne, bless his heart, came
up to me after the paper came out one day and said, “You know, you’ve got to think sometimes
about how these things are going to be heard.” I said, “You’re absolutely right.” But that was
really the end of it. I didn’t hear another thing. So, I really didn’t know what to do and I felt –
Alex was dead, so he wasn’t there to have my back and I didn’t feel like anybody did because no
one was saying anything. Lim, my closest other friend was on the board at the time. Now, he
wasn’t part of the gaggle that was trying to excommunicate me, but he didn’t say anything about,
you know, how I could of – I just felt shut out all of a sudden.

So, a friend of mine said, “I don’t think you can just turn the other cheek on this one. I think you
need to, you know, tell them how angry you are.” I don’t do that super well. Anyways, I went
into the board room and I did my best impersonation of a very angry man for a while. Nobody
said anything. And I said, “And I resign!” And I half expected the people on the board that I
knew loved me and cared for me – I half expected them to stand up and say, “Look Rick, this has
been a bit of a gong show, but please don’t go.” But no one said anything. And I walked out and
I never went back… PWA did, in the end, become something different and that was inevitable. I
think things were lost and things were gained in that story. Mostly, I’m just a little bit
heartbroken about – and remain that way – about how that ended and how that… Like, to leave
there with anyone thinking that that was who I was – the fact that anyone could have thought I
was a homophobe after all of that time together was just a – just, again, heartbreaking. But what
wasn’t heartbreaking was being able to go out and do that work for ten years in schools and to,
you know, prove to myself every day with my heart filled with the spirit of trying to help people





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understand that we need to be better to each other. That helped me to understand and remember
who I actually was regardless of whatever mistakes I may have made in that interview. [Laughs]
I recently sent the interview to a friend of mine who is deeply political and queer and was
involved back in the day, and he read it and he said, “I don’t really see what the big deal is,
Rick.” So, that – while I was glad to hear that from him, it didn’t change how that all felt at the
time and how that… Yeah, it is what it is – I hate that expression. It happened, I left… I wish it
hadn’t. I wish it had been different – no way around that. But it doesn’t take away from those
years that I had there and my love for those men, and I know who I am.

BK: At least from what you say, what you said in the interview sounds like something that
needed to be said.

RW: Yeah, I think it did. I think that I needed to have thought about a different way of saying it
that meant the same thing but had a little less of an “us and them” feel to it. It wasn’t what I
meant. I mean, I didn’t mean to – I didn’t mean for it to read the way it read and I think that’s
probably fairly common for people who talk to the media about things. You go, “Hm, that didn’t
come off like I sort of had anticipated it would.” And I was kid and I wasn’t ready to run PWA –
I really wasn’t. I mean, I had a couple of good moments – chasing Peter Dueck out into the lobby
after he announced his fabulous new AIDS program that was good but still didn’t… The bastard
came to this meeting and said that – he announced this new program which was an improvement
over what they had been doing in the past, but he talked about fucking Alex and how if Alex
were here today, you know, he’d be so happy that – blah, blah, blah. But nowhere in this fucking
AIDS program did PWAs have a seat at the table. Like, it was “Here’s all these wonderful things
we’re going to do for you,” and some of them were very welcome and important, but nowhere
was it, “We’re going to include you in the decision-making.” So, I chased him out into the lobby
and I said, “How dare you use Alex’s name when he died not having a seat at the table and
nothing has changed.” That was a good a moment. I like that moment. There might have been a
couple others. But I wasn’t ready to handle – I was a child amongst a bunch of very strong men.
And if you get – and I wasn’t prepared, I wasn’t ready and willing… Well, I was willing but I
wasn’t ready to have that as a responsibility. I don’t think I was – I wasn’t doing the work that I
needed to do to make that happen. I wasn’t the right choice. I think it would have been better for
me to have learned a bit more before taking that on, but it’s okay.

BK: You were also probably the first president or chair who wasn’t a gay man.

RW: Oh yeah, and that alone was going to be a problem for some people. But – and maybe
that’s what started it. I don’t know. It felt like it all started to pick up steam after that article. I’ll
never know, because…

BK: But if a gay man said that, it couldn’t have been viewed in the same way.

RW: No, exactly.

BK: Which is the irony.






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RW: Yeah. Yeah… And I just felt… [long pause] Like, it wasn’t – the problem wasn’t that I
wasn’t doing a good job or that I wasn’t – it was that no one was… No one was talking to me
about it and then – and there wasn’t any open dialogue. Mostly, I just miss – I miss the people
that I loved there and that will never change. They changed me forever and that’s enough. Yeah.
I had the opportunity with – I tried to continue to do the work in small ways. You know, I’m
writing this memoir and I wrote a play that has to do with the criminalization of HIV, and I hope
it will get produced. I wrote another play kind of about my life with HIV that was produced. So,
I’ll continue to do the work and I’ll continue to be trying to be someone who’s an ally.

BK: I guess in general, how did the HIV community get through this – like, the epidemic as a
whole. Thinking large-scale, how did they collectively deal with the epidemic and navigate that?

RW: I think… I think that… Gay men had such a – had been learning how to organize and take
care of each other and fight back in a sense for decades. And then AIDS came along and, in a
sense, a lot of those – all of those skills were very transferrable, so they moved on to dealing
with that, along with also the other things that they continued to need to deal with. So, I think it
was a community of any community that was pretty well prepared to handle it. And I think that
probably if it hadn’t happened – if it hadn’t sort of struck in the way that it did in cities like New
York, San Francisco, Vancouver, or Toronto, that probably a lot more people would have died. I
think that that community was so well-organized and so ready to go that they got through it
because they were… Well, however – got through it because they were organized and then the
community – whoever was on that boat – demanded that we’d be heard. And that they didn’t
take no for an answer and that they were organized enough to make enough of a rational
nuisance of themselves. Like, you can’t just crash the Montreal Conference and demand shit
without knowing your shit – you can, but you’re not going to get anywhere with that. The people
that crashed that party knew as much or more than the people who were at the party. So, very
bright, motivated people that were also ready to fight. And I think if I learned some things about
that activism is that it doesn’t work unless you have people who are willing to put in the work to
actually understand what the issues are and how – and also to find answers on their own. Like,
here's how you run a clinical trial. You don’t run it like this. You run it like this. And if you’re
smart, it doesn’t matter how many PhDs you do or don’t have, if you find yourself with a willing
listener – and I think that there were some willing listeners – you know, smart people listen. And
so, I think that there were enough smart people on either side and enough rabble rousing to
accompany it that the progress that was made was – I mean, the movement has changed the way
we run clinical trials for all sorts of people. So, that’s incredible.

BK: Even things like drug approval and expedited drug approval for potentially life-saving
drugs. Some amazing legacies of AIDS activists.

RW: Yeah. So, I think we got through it because they were prepared and prepared to do the
work, and were empowered enough, through their own stories – having lived through the
oppression that they had to live through – that they were like, “This isn’t going to happen. We’re
not going to take this shit anymore.” Yeah. And they had the resources. You know, one of the
things that kids used to ask me is, “How have you survived?” And I said, “Well, there’s a bunch
of reasons. I have a roof over my head. I have clothes. I don’t have to worry about food. I don’t
have to worry about money. I have a family that loves me. I am a white male. I have everything I





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need to succeed.” And while gay men would have had a lot more on their plate to overcome,
there was a very empowered, “I’m not going to take this because I don’t have to” group of men
who just demanded things be done different, and had to be heard because they were bright,
because they were angry and strong, and weren’t – maybe in some ways weren’t – I’m kind of
extemporizing here now [laughs] – maybe weren’t as beholden… or not beholden, but as
reliant… In some ways freedom in some manner had been achieved and there were these little
bastions of – these little strongholds in New York and San Francisco and all over the place,
where they could fight from. I don’t know. Strong – very strong – very strong men and women.
Unfortunately, mostly who I met were the men because, again, PWA wasn’t necessarily a place
that women felt at home either, which is why other organizations sprung up to meet those needs.
But the people that I was alongside for the most part were gay white men from the West End and
they saved my life.

BK: It’s such a unique story. There are aspects of it that are very sad, but so much wonderful…

RW: It was terrible, but it was the best thing that ever happened to me – and I wouldn’t wish it
on anyone. [Laughs]

BK: Quite the paradox.

RW: Yeah, totally.

BK: How has your perspective on HIV in general shifted over time? We kind of talked about
that a little bit.

RW: Yeah… [Long pause] I always used to get bad news when I went to the doctor. I was never
close to death but I – well, I was as close as you’d want to be without being close to death.
[Laughs] Very low T-cells and different opportunistic infections, nothing life threatening. But
regardless, you’d go to the doctor. I was resistant to… two of the three classes or three of the
four classes – I forget which. It seemed like every time I went to the doctor, he’d say, “Well,
these ones aren’t working. You know, your viral load is still here and your T-cells are still there,
and you’ve got this infection.” And I’d go to my favourite little Japanese restaurant and cry into
my miso soup, and go home and weep at a Sears commercial. I cried all the time – all the time,
every fucking day. And now, I don’t get bad news at the doctor anymore. When I go to the
Japanese restaurant – well, my favourite Japanese restaurant is now gone, but I went to a
Japanese restaurant before I came here and thought about all those other trips when I’d be alone
at the Japanese restaurant. So, isn’t that great? [Laughs] And I wouldn’t have it any other way. I
have a beautiful little puppy dog and a lovely wife and a boat, and I go free diving. And my
parents are still alive and I’ve become friends with them. Life’s good. I’m very thankful for all of
that. And I sure miss that dying guy… because it was a lot easier sometimes in a way. That’s not
right – I’m not sure it was easier, but it was… yeah. I’ve said it all… [Long pause] It’s a bit
melodramatic. I don’t want to be the dying guy, but you know, it’s…

BK: I can totally understand. I mean, I can’t totally understand obviously, but I can wrap my
ahead around what you’re saying, absolutely. I’m just about out of my questions per se, but the





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last formal question we like to ask is if you have any advice for younger folks that might be
newly diagnosed or people that are becoming positive today.

RW: Find your people to go through it with. I think I don’t… Yeah, you know, peer support is –
was super critical for me to… And again, I don’t know how many pieces of that pie having that
peer support provided for my survival, but it certainly had a couple of them. And again, without
– wow… It doesn’t matter if you survive. You’re likely to, given the drugs that we have access
to and the fact that you probably won’t be resistant to any of the classes of drugs right away, and
you’ll probably live until you’re probably seventy-two and fall and break your hip. But it wasn’t
really the point. Getting involved with something like PWA, the point wasn’t that we were going
to survive till we were seventy-two. The fact was that we were going to take care of each other
until we died. So, I think having people around you who understand what you’re going through
and understand because they’re going through it, I can’t imagine doing this – I can’t imagine – I
couldn’t… The moment I sat down in that office and the doctor told me I had HIV, I knew that I
couldn’t do it alone and that I couldn’t do it with parents, I couldn’t do it with my sister. I had to
do it with people who were living and dying with it. And I imagine that a great amount of what
being HIV positive today is different, but it doesn’t matter. You’ll have all these other things that
are in common. Despite the fact that some of the world is understanding that undetectable means
untransmissible, there’s still going to be anxiety about sex, there’s going to be anxiety about
transmissions, there’s going to be anxiety about not being loved, there’s going to be… you know.

BK: Criminalization.

RW: Criminalization, yeah. There’s going to be – that’s still a thing. And I guess there’s been a
little bit of progress as of late, but still a thing. And so, if you have people around you who aren’t
at the same threat you are, like, it’s good. I don’t think you want to be in the trench alone. You
want to be there with your people.

BK: Well, I think that’s a good note to end on from my perspective, but is there anything that
you wanted to mention that I haven’t had a chance to ask about or anything that you haven’t had
a chance to speak to?

RW: I don’t think so. I think… that’s it.

BK: It’s a very rich story and I’m just really thankful that you shared it with us.

RW: I’m super thankful I had the opportunity to, so thank-you for having me along. It’s good to
feel like this is what it felt like, right? So, if I miss that, I had the opportunity to do it again.
Phewf! [Laughs] Thank god I’m not doing it every day anymore. It’s exhausting! Really easy to
fall asleep at the end of the day.