Interview with Dakota Descoteaux

17-11-17-DD.docx




“HIV in My Day,” Dakota Descoteaux (November 17, 2017)

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“HIV in My Day” – Interview 9


November 17, 2017
Interviewee: Dakota Descoteaux (DD); Interviewer: Ben Klassen (BK) [William Flett (WF)
also present]

Ben Klassen: Alright, just getting started, talking to Dakota this afternoon. So, the way we like
to ease into the interview is just by asking when did you become involved in gay life or start
engaging in the gay community, so to speak?

Dakota Descoteaux: Well, I came out when I was living in Ottawa in the early eighties – so, like
[19]81, [19]82. I probably was in my early twenties – twenty, twenty-one. And I was working at
a hotel – downtown, urban hotel – in Ottawa, which is a very gay-friendly work environment.
And… there were lots of gay-friendly clubs in Hull, Quebec across the bridge, which were open
‘til 3:00am, so the discos would spin their tunes and serve alcohol until three, while in the
Ontario side, bars would close at one. So, there was a very… entrenched thing in Ottawa that
people would go to the bars and drink until one and then drive across the bridge and carry on
drinking until three. People were less concerned about drinking and driving in those days, but
there occasionally would be blockades out on the bridge, which caught a bounty full of
inebriated drivers. So, anyway, so yeah – engaging my gay life through the clubs is how I came
out.

BK: In Ottawa and Hull.

DD: Yeah. And I met a fellow at – I met a gay guy at one of the hotels, I was initially working at
it – a young man, and… He said, “We should go out for a drink some night.” And I said,
“Okay.” And I still hadn’t, like, fully come out. And this front desk clerk was married. I was a
bellhop. And he was so cute. And I said, “Yeah, I’d love to go out for a drink.” So, he said
“Okay.” And then he gives me a night that would work for him and we were working the same
shift. So, we get off at eleven – perfect time to hit the bars. So, I said, “Well, where do you want
to go for a drink?” And he said, “I don’t know.” He says, “Where do you want to go for a drink?”
And I said, “I don’t know. So, let’s drive someplace and see, you know, what we can find.” So,
he was naïve. This was initially before I had discovered the club scene. So, we were driving
across the bridge to Hull, and he goes, “Well, what kind of a bar do you want to go to?” I said,
“Doesn’t matter to me. What do you mean what kind of bar do I want to go to?” He says, “Well,
do you want to go to a gay bar?” And I… “Sure, that sounds fun! Do you know where one is?”
“No. [laughs] Do you know where one is?” “No.”

So, we drove around, parked the car and just started walking around where the bars were, and we
heard some thumping Donna Summers coming out of a doorway. And we said, “Well, let’s
check in there.” And it was “I Love to Love You.” So that was the genre. I came out to “Love to
Love You.” Walked in the door – saw a dancefloor of men only moving their butts to Donna
Summer’s “Love to Love You” – and I thought I’d died and gone to heaven. [The] combination
of both it being Donna Summers singing the hit song on the radio, which I loved, and seeing, you
know, men only dancing in there. So, you know, we started dancing, had a torrid affair, and
[laughs]… that launched me into my gay life.





“HIV in My Day,” Dakota Descoteaux (November 17, 2017)

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BK: That sounds like a nice way to come out. [laughs]

DD: It was a wonderful way to come out. And, he was lovely, but married, and his wife was
having a baby, so, you know – I could, kind of, only be with him for so long. I said, “This
doesn’t feel right.” He said, “Me too.” [I said] “Focus on your family life.”

BK: So…

DD: Anyways… That’s the beginning.

BK: No, that’s a great… that’s a great story. Thank you so much for sharing that… What did the
gay community look like then?

DD: Um… What did the gay community look like? Well, you know, it was still pretty closeted,
but… You know, Quebec is a pretty – was very liberal at the time, back in the late… that might
have been the late-seventies – that was the late-seventies. And… French Canadians – there’s a
lot of French Canadians in Ottawa. It’s pretty much fifty-fifty – fifty percent Anglo, fifty percent
French-Canadian, and a lot of combinations of both. And… they brought a very – the French
Canadians brought a very liberal, open-mindedness about homosexuality, so I never felt
stigmatized. I was out at work. It was funny, one tim-… I ended up being a manager at the front
desk – in time I worked my way up through the ranks – and I had an executive manager pull me
aside into his office, I remember, one time. And I was hanging with a rather flamboyant group of
guys at the time and I probably picked up a few of their mannerisms. You know, as a young
person, you do tend to… you can do that, you know. You can kind of pick up other people’s
things in your fitting in. And he pulled me aside and he said, “I think you’re a little bit too
flamboyant for…” What? [laughs] So, he told me to… bring it down. And that was the one and
only time in my entire life I’ve been told I was too flamboyant, which I may have been at that
time. I don’t even think of myself in that way, but I think of the crowd that I was hanging
around, and they were pretty… animated. And I probably picked up a lot of that, you know…
So… But, I mean, just getting back to the fact that, you know, I’m out, open, no stigma. I didn’t
feel any discrimination. But… Okay, this is triggering some memories. Can I go back four or
five years?

BK: Sure. Yeah.

DD: Four or five years – maybe three or four years… Three or four years prior was like work
and then go to a gay bar in Ottawa. The Lord Elgin Hotel was known to have a basement bar
where homosexuals – not gay people, homosexuals – went. And I don’t even remember how I
found the [unclear] – it was very subversive to find out about this bar. And this was before the
disco scene. And… I went there. I might have been nineteen or something at the time. And the
Lord Elgin Hotel was like the Fairmont Vancouver Hotel, so an old-looking castle built, you
know, a hundred years ago. So, I went down the stairs and I went to this bar. It was just a big
square room, poorly lit, with chairs around the perimeter – no tables. So, I went and I ordered a
drink, and I sat there in a square – a very large square room – looking at people who were very
far away and over there along the wall. Along here, these we were all frightening people. I mean





“HIV in My Day,” Dakota Descoteaux (November 17, 2017)

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frightening in that they were… forty to fifty years older than me [laughs], looking very
downtrodden. It was like going into a very, very sad old age home where alcohol was served and
it was just men. And, it was just like, oh my god. If this is what gay is, I mean, the last thing I
want to be is gay. This was frightening to me. But that was my actual, very first memory prior to,
you know, the disco scene and then coming out into much more celebratory experience. [laughs]
But yeah. Clearly, as frightening as that was – and of course, I never went back – you know, time
and distance from that experience… the curiosity came back to explore. Okay, there’s gotta be
something else.

BK: And so the…

DD: And then there was Donna Summers at the gay bar, at the disco in – in Hull. It was – think
of the era – it was disco music. What a great time to come out. I’ll tell you, the music – Sylvester
and all the disco divas of the day – it was like, phenomenal. I really hit the jackpot. [laughs]

BK: I’m a little jealous, yeah.

DD: Yeah, cause there’s no movement now. Like, there’s lots of music and lots of venues, but
there’s no “we’re in the such-and-such age of music.” In disco was a defined period of time with,
you know, a type of music that was all danceable. Yeah…

BK: And the community at the time very much revolved around the bar scene?

DD: Yeah. Yeah, it was bar scene-oriented. There was a very small bathhouse in Ottawa that I
went to a number of times, but it was tiny. It probably wasn’t much bigger than – three times the
size of this room, for example. A few corridors, a steam room, and about twelve rooms, and ten
lockers, and… you know, so. But… Hull was where the dest- - and people were picking each
other up at bars. Yeah.

BK: And so, you have this little snapshot of Ottawa and Hull, and then you move out here.

DD: Yeah.

BK: What did the community out here look like when you arrived?

DD: Oh my god. It was like going from… Like, as pleasant of an experience as I had kind of in
my two or three year – that was kind of a two or three year experience of that… And then when I
moved out here, I initially moved to Whistler for a year because I was transferred with the same
hotel chain, and there was very little to no gay – there was no gay life in Whistler. But I
happened to work with three gay guys at the hotel I worked for, so that was my gay life. And
then I would drive down here on weekends. And I felt like I was driving into San Francisco
because Vancouver had fourteen gay bars at the time. Fourteen. All in the West End, one down
in Gastown. And… I thought, again – I thought I’d died and gone to heaven, because going from
a town of one bar… there was one disco that we went to in Hull called Sex, and… you know, it
was fun, it was great. It was large enough and two levels and it had it all going on. But you can –
you juxtapose that one bar to fourteen bars, each with their own flavour – it was a different





“HIV in My Day,” Dakota Descoteaux (November 17, 2017)

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experience, yeah. I loved. And, you know, Yaletown wasn’t Yaletown at the time. It was a series
of dilapidated warehouses in disrepair, and there was one bar down there that - [laughs] the name
just eluded me – that you’d walk through all this scuzziness at the foot of Davie. It was dark all
of a sudden once you crossed… not even Homer [St], like Burrard almost. And – and you’d find
this bar and it was on Hamilton. And what a blast. You’d walk through the door, you know, and
more gay men, a patio. And there was a bar down… Yeah, I’m peeved that… It will come to me.
And then there was a bar down in Gastown that had a big back deck that overlooked a courtyard,
so that was very cool… The Odyssey, of course. Numbers… There was a bar called Numbers
and it was on Robson at the time, where the White Tower Pizza was, which is now a Stefo’s.
There was a bar on Burnaby Street called Buddies. You could walk to – you could bar hop four
or five bars up on Davie and Burnaby, and the one in Yaletown, all within a night. You could hit,
like, four or five bars. If you got tired of one, you could go to another. It was amazing.
Absolutely amazing.

And then the bathhouse life was very vibrant at the time. There was two or three bathhouses. In
fact, I met my first Vancouver partner at a bathhouse. It was very… that was a very common
way to meet a gay partner at the time, and it was always a funny situation when you were
introducing your partner to parents or straight friends. “Oh, where did you guys meet?” “Um…
We met at the gym.” [laughs]

BK: That’s a half-truth. [laughs]

DD: It was always – it was always the… [laughs]… You know, because bathhouses had a
reputation but… back in those days, I mean, like I said, if you didn’t meet someone at the bars –
which, you know, might have been more focused on the socializing and the dancing and the
smoking – the bathhouses were more focused on the intimacy and the sex, and there was a…
And… You know, back then, the intimacy factor was very high in the bathhouses where you’d
have sex with somebody in a cubicle, but then you’d stay and have a smoke with them and chat
for an hour. And if you felt that connection of “Hey, we just had amazing sex and now we’re
having an hour of intimate conversation getting to know one another,” that’s when the phone
numbers would be exchanged and the potential for relationships would begin. You know, and if
you just had great sex and you didn’t feel a, you know… a deeper connection afterwards to stick
around and linger and chat for an hour, well then that person was just meant to be there for a
sexual kick, you know.

BK: Yeah, I think this is something that gets missed a lot of the time when people talk about
bathhouses, is that people miss the fact that these are spaces where community is actually being
f- - like, it’s not just where people are going to have sex, and that’s a huge part of it, but this is
where community is being fostered in certain ways. Connections are being made. Relationships
are forming, as you were saying.

DD: Yeah, I wonder if that still happens today. I think because… in the absence of the Internet,
there was only two ways to meet people – at the bars or in the bathhouses. Now there’s so many
different ways that you can meet gay people that the focus of looking for your future partner in
the bathhouses – probably so low on the possibility list. [laughs] Where then, it was much
higher. Like if it was on a scale, it would be like, maybe, fifty percent of the relationships were





“HIV in My Day,” Dakota Descoteaux (November 17, 2017)

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formed through a bathhouse experience, as an example. Yeah, put it in context. They played a
different role then, yeah…

BK: The community sounds – just from the way you’re describing, sounds so vibrant.

DD: It was. Yeah.

BK: And big.

DD: It was. It was huge.

BK: Like, it stretched in a larger direction…

DD: And visible. When you have a concentration of bars that we had – fourteen bars in the West
End – I mean, you know, you could see gay people everywhere. So, walking up or down Davie
Street was, for me, was being like in the Castro in San Francisco. You know, I’d come from a
one bar town, which was fine for me in the day, and a bathhouse the size of a closet; and
community that had no core – there was no gay village. Once you throw a gay village into the
mix, I mean – again, I thought I’d died and gone to heaven, you know. The – the gay restaurants
that we’d go to after the bars closed, and they’d be full of drag queens, and leathermen, and –
cha-cha disco boys, you know. It’s like – it was hilarious because you could be sitting there with
your twenty-something-year-old buddies, all in your fashionista, and then at the next table would
be a bunch of leather guys that just came from the leather bar, you know, with pierced nipples
and their hats and their whatever. It was, like, awesome. Oh, and then across from you would be
the drag queens, so it was all very cohesive. Yeah… I loved it. If I could go back there and live
there for another ten years in that time, I would. [laughs]

BK: Wow. Wow. Yeah, you certainly paint a picture. That’s wonderful… Just trying to think if
there’s anything else…

DD: But then, yes, HIV came into the picture. [laughs]

BK: Yes, that is where we’re going, obviously, in this interview.

DD: Yeah, so this was all very celebratory until… Yeah.

BK: Yes. So, I guess shifting into that gear… Do you remember when you were first…? When
were you first hearing about HIV and AIDS and where were you hearing that information?

DD: Well, I moved to Vancouver, as mentioned, from Whistler in [19]85 – maybe I didn’t
mention that. But I was only up in Whistler for one year, the year of [19]84. Moved here in
[1985], to the West End… Started hearing about it through my – I got a job at the Granville
Island Hotel as a waiter in the very popular, trendy restaurant of the day. And most of my peers
were either women or gay men. And, so out on the – I was a smoker at the time, you know – and
it’s like, “Have you heard about this? Have you heard about that?” And so, it was all kind of
initially quite subversive, like… “Have you heard what’s happening here? Have you heard





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what’s happening there?” And it was scary and… I met a partner in the bathhouse – when did I
meet him? So, I moved to Vancouver [in] Spring of [19]85 – by late summer of 85, I’d met a
future partner at the bathhouse. So, we decided, you know… we’d been hearing about this and
that and Rock Hudson died, so, you know, things were moving from the rumour mill to the front
page of the newspapers, to the gay rags of the time. The… What’s the name of that paper? The…
Angles [laughs], I mentioned. And there was another… There was another more political…

BK: Maybe The Body Politic?

DD: Yeah, maybe. But, see, back in those days, the gay newspapers were very political. You
know, we were still, kind of, fighting for our rights and so they were great vehicles to transition
to – from fighting for rights and anti-discrimination, and… that page, to they were trying to take
on what was coming down the pipe through, you know, already being the go-to source for
information in the community. So, of course, they started writing about it, and… “this is coming
up in New York City” and “this is happening in San Francisco.” So, it was all very “what’s
happening there” and “what’s happening there,” and it’s… it’s coming here, but how far has it,
you know, come in.

So, Andre and I – Andre was his name – said, “Well, we should go and get tested,” because…
I’m not even sure if in ‘85 the test was around yet – it might have been, but… We met in ’85 and
he was ten years older than me, and I was maybe twenty-four or -five, and he was like thirty-
five. So, he’d been around the block and we met in a bathhouse, and I’d already been around the
block a few times myself. So, I said, “Yeah, we should go.” So, we went in January of ’86 and
both came back HIV positive… So… It wasn’t – I was already, kind of… knowing how I kind of
dove into the deep end of the gay swimming pool to enjoy all of the benefits of living in this
terrific city in the day – I wasn’t surprised, and Andre wasn’t surprised. So, our strategy was,
“Well, we don’t really feel any different than we did before we were given the diagnosis.” There
was no – you know, we didn’t go to get tested because we were sick. So, my strategy and his was
“Well, let’s just keep living our lives as we’ve been living it, and not make any changes until we
need to.” I didn’t see the need to make any changes, so I kept working, and…

Couple of the waiters I worked with were coming down with symptoms. Friends started – things
were coming up in our circle of friends. KS was presenting, where a friend would get a KS lesion
and then have many, and then you wouldn’t see them for a while. And then you’d see them again
and they were walking with a cane down Davie Street, because they’d lost forty pounds and were
undergoing radiation or chemo or whatever… Yeah, AIDS became a very visible… it was – it
became very visible in the community. But, like San Francisco and New York and the other big
urban centers on the continent, it wasn’t hidden and it was very visible. So, in the village, people
that were coming down and were suffering from various symptoms of HIV – wasting was one of
them; KS was another visible symptom – these people were still out in community. So, you’d see
them in the restaurants and in the bars, and in the bathhouses… So, you know, it would be very
common for bathhouse etiquette from that time forward, when you’d be having a shower, you’d
be looking at the guy next to you that you think is hot, that’s giving you an erection. You’d be
looking to see if they’ve got any purple blotches on them to see if they had HIV or AIDS… So, it
became very – we were kind of minding one another, but we were also looking at one another.
And for those who were negative, you know, especially, it became... a survival thing of the





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condoms, and you know… Vancouver was very quick on springing into action on following the
protocol that was being recommended in the other urban centers. We were very much following
in step and well-informed as to what was happening in the big urban centers, so we were very
much following San Francisco – on the same trajectory, but on a smaller scale and just a bit later
in the journey. So…

Yeah, at St. Paul’s, the bottom level where… there were the two ramps that come up to get in the
front door. There’s a door down there to a lower level facing Burrard that was the infectious
disease clinic. And there would be – you’d walk in there and there’d be like fifty guys sitting in a
room this size waiting to see a nurse or a doctor, all in chairs around the perimeter in various
states of viral infection with AIDS. You could see somebody, you know, that looked perfectly
fine, to somebody who looked like they were on death’s doorstep, coughing up a lung – they had
pneumonia – to somebody covered in lesions. So, you’d get to go there and see the whole
microcosm of AIDS right there in one room. So, when you’re somebody who still hasn’t been
impacted in any kind of way, that I was not impacted, it was a fucking frightening experience to
sit there and go, “Is that my future? Is that my future? Is that me in a year?” So, yeah, for me, I
had to pull on the deepest resilience I could muster to get through it.

And then, my partner, Andre, started manifesting symptoms of HIV. So, this would have been –
let’s see – ’89. We were probably together three or four years without any personal… impact.
We were told at the time of infection that you could have ten years before this kicked in, so I was
really counting on that being the case, is that, “Okay, I want my ten years, dammit! [laughs]
We’re four years in… six to go. What do you mean you feel sick? It’s only been four years!”
[laughs] But who knows how long either of us were… I mean, if we were diagnosed January ’86,
it’s a pretty sure thing that in December of ’85, we were HIV positive, and when we met in the
Spring, and who knows from before… And I remember having a trip to Los Angeles in ’83
where I was a bad boy, and Los Angeles was Los Angeles, so that could have been where I
seroconverted if I have to think back. And I remember having a night, being out, and just having
an “I don’t give a fuck” headspace I was in, because the news was already coming and it was
very dire, and it was very somber, and it was very… yeah. So, the news itself of this is coming,
it’s already here. We don’t know how long it’s going to be before, you know, you’re impacted.
So, I was in a – kind of a bit of a negative headspace and acted out in ways that probably put me
at risk, so… Anyway. And that just goes back to not knowing when we were truly infected at the
– in the – for us, for Andre and I.

So, when he started showing symptoms, his was – he’d break out in night sweats and soak the
bed, like four times throughout the course of the night. We’d have to get up and change the
sheets. And he’d have fevers. Well… the night sweats and fevers were different because the
night sweats, you wouldn’t feel hot – you’d actually wake up because you’d felt the sensation of
being surrounded by water. It’s like, “Did somebody just pour, you know, a jug of water on me?”
I mean, we’re talking a lot of water in the night sweats. And then times when I’d be rushing him
to St. Paul’s where he’d be in agonizing, undefined pain. And I was working. I’d left the – back
in ’85, ’86, ’87, when waiters that I was working with were getting sick and people in
community, I thought, “You know, the hospitality industry has a really shitty benefit plan if I
were to get sick. First of all, they pay me sick leave for so many weeks. It wouldn’t – the
percentage that they pay me wouldn’t include my tips, which are half my wages. I’d be having to





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live off of the income of a pauper for six months and then I have no coverage.” So, in my head, it
was like, that doesn’t bode well for me. I want to be somewhere in my work environment where,
if or when the day comes where I fall ill, that I have a full extended medical package – sick
leave, long-term benefits. I was already very security-oriented and my father was an insurance
agent for us, growing up, so I had a very strong attachment to security and making the right
choices before things happened. So, I put a time limit on the how long I was going to work in the
industry that didn’t provide me any benefits, and I said, “Okay, when I hit thirty, I’m out of
here.”

So, that was three years at the restaurant and then I went and I applied to work for an insurance
company… And I got the job. So, I was an insurance agent in the beginnings of my career,
building my book of business, because it was a commission-driven industry, but initially with a
salary to – for the new hires, to get them started and to provide them an income while they, you
know… learn the business and grew their clientele. So, I was working in the insurance industry
at the time, with a sick partner who was getting sicker at home. So, that became a real challenge
for me because there was stress involved in, you know, living with my partner, who was in
declining health, who was now out of the work force – he couldn’t work. He’d acquired a bunch
of debt and issues that came with the way he left the kind of work he was doing – he left a bit of
a trail of devastation in his wake. So, I was dealing with the stress of that and then he started
acquiring dementia, which was one of the HIV progression to AIDS things, so he had no sense of
responsibility. And once he went onto some sort of income system, he would spend the rent the
day before. It’s like, “Hey, can I have your rent?” “Oh, I went out shopping yesterday and
bought some new clothes.” “What?” So, I was dealing with, kind of, challenges that started to
become beyond my capacity to handle. I mean, I was still maybe in my second year of the
business, so I was still, you know – my income was low. So, I – I needed his support.

So, he got to the point that his dementia started getting so bad that I couldn’t take care of him
anymore, and he ended up… Some friends he had, he started telling stories that, you know, I was
treating him bad and I was beating him. I don’t know what he was telling them, but he got the
sympathy of these two gay guys that owned a house with a spare room. And they felt sorry for
him and they forgot the details of this, but they said, “Oh, we’ll take you in.” And for me it was
like, “Oh, thank god. I just can’t handle this anymore.” And I thought, “God bless you guys. You
don’t know what you’re in for because whatever he’s told you to gain your sympathy, you’re
going to have hell to pay.” Because he would rage and he had all sorts of things that would –
behaviour issues that were not him. They were the disease. So, sure enough, he moved in with
them and turned their place upside down, and they kicked him out. And his mother came from
Montreal – his aging, aged mother came from Montreal – and took him back to Montreal. He
ended up declining quite quickly and ended up – I’m skipping back here – he was in palliative at
St. Paul’s hospital after he left the house of these guys. And then his mother came. And his
behaviour was so bad in palliative, they kicked him out of there, and I never forgave the doctor
that did that. [laughs] I’m like, “What!? You’re kicking somebody out of palliative care?” That’s
– probably was unheard of, but I guess he was disrupting the whole floor. Anyways, his mother
came and, I remember, we went from palliative in St. Paul’s and I was with his mother. We went
– we fetched him. We got in an ambulance and we drove to the airport and she flew him to
Montreal and put him in care there, and he passed away there… within a couple of months.






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So, in a way, it was a gift. I’m a Christian. I believe in God. I was so thankful to God for taking
him off my plate. I’m just – he was beyond my capacity to deal with. And also, of course, you
know, dealing with HIV myself – I was working in an industry where I was writing life
insurance policies for people sitting across a table from me saying “Do you have HIV? Blah,
blah, blah. We need to do an HIV test on you.” I was selling a product that I personally couldn’t
purchase myself, which always was a mind fuck – when I was doing it, it’s like “Well, I’m HIV
positive and I could never buy this.” You know, and nobody knew in the office, so the closeting
that I didn’t experience as a gay man coming out in Ottawa, I certainly felt as a gay man living
with HIV in the eighties in the insurance industry. [laughs]

BK: Did that stigma, like, manifest within the gay community as well? Like, that kind of…?

DD: Well, only because people were fearful of contracting AIDS or HIV if they didn’t have it.
But the stigma at the time was… the fear-mongering that was happening. There was talk of
quarantining people with HIV in B.C. and putting them on an island somewhere – some whacky
politician came up with that. There were some things that were happening in the States where
people with HIV were being evicted from apartments and their accommodation. People being
unable to – being fired from work and there was… I mean, believe me. It was a nasty piece of
business being HIV positive in the eighties because the – so many unknowns around the disease,
on how to catch it, etc., stigmatized those living with it into a corner of fear that… you know,
you couldn’t really break out of, so you kept it a secret for all intents and purposes, other than,
you know, within the community where you had an outlet.

So, thankfully there were outlets for that. So, when I joined Positive Living, they were doing
Wednesday support groups. So, I started attending those. So, we would – it would be facilitated
by a peer and we would sit in a room and talk about, you know – we would pick an issue for the
two hours or… And then, you know, everybody would talk about HIV and what was happening
in their life, and different – a whole crazy, whole list of things people were trying in the
medications, and how people were dying from 3TC poisoning. And, “Oh my god, I started on
3TC and I’ve been so sick.” You know… So, we were all very, a microcosm of… you know,
what was being offered. There was different [sic] medications that were being offered as a single
drug that really didn’t work. Sometimes they had a temporary reprieve and then failed miserably.
There was all sorts of, like…

Andre, for example. One of the things that he contracted was pneumonia, so they said “Okay,
we’re going to give you Septra,” which is an antibiotic but it has sulphur in it. So, within a
couple of days, he’d broken out – and this was very common experience that people had with
this particular drug – and a rash that he was covered in. Red blisters from head to toe. “Oh, you
have an allergic reaction to Septra for the pneumonia, so now we have to put you on atomized
pentamidine.” So, we’d have to go to St. Paul’s once a day and breathe this thing through a
machine that would – had, like, a tank and an air mask. So, that was the alternative. If you
couldn’t take this drug that turned you red, you had to go into the hospital every day. So there
were all of these primary, you know, Band-Aids, and then there was the Band-Aid on the Band-
AID over here – it was a mess. I mean… The disease and the drugs and the pharmaceutical
companies, they were all finding their way. And there were no answers.






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So, you know, the support group would be an outlet for people to vent, share... come up with
their different things that they’re trying. “Oh, I’ve tried this. I’ve tried that. This is helping, that’s
helping.” So, you know, it was also on the information sharing. It was… So, I found that…
lifesaving for me, because just the opportunity to go and share what’s been happening this week:
“I got a sick partner at home. This happened with him. That’s happened with him.” You know,
people weren’t necessarily able to offer solutions or such, but… I always felt lighter when I left
the meeting because I’d just shared. I took the burden off my shoulders. I put it out, let it go. So,
they were very helpful for me for many years in that way… to just unburden myself and be able
to walk out of this support group meeting and feel like “Yeah, I got to share with everybody and
got some sympathy and empathy,” as we were all providing for one another, and yeah… That
was the late eighties.

And then Robert [sic] died in ’91 – May of ’91. I get a knock at the door of where I’m living. It
was Canada Post. I wasn’t expecting any package. “Oh, you have a package delivered for you.”
“Oh, okay. Quebec. What’s this?” I start opening it and there – oh my god, it was Andre’s ashes.
[laughs] His mother sent them without telling me. So yeah – so, he came back to me in a box, in
ashes, in May of ’91. So that was… But he did have a wish. He told me before he got dementia
that if he ever were to die of – of AIDS, he wanted his ashes spread at the Southlands Riding
Club down in the horsey part of Vancouver, where the horses are, down south. He used to be an
equestrian long before I met him and he loved horses. So, I went down under the cover of night,
‘cause it’s illegal to spread ashes on private property, and public property for that matter. So, I
spread his ashes all around the riding circle, so that was kind of neat. And I did have a memorial
for him, here. At the… riding club they had, like, an old-school building off of the track, and it
was a nice size. It was all dark wood inside. It was very 1930s, and it was kind of neat, so… I did
have closure, even despite the fact that that five-year relationship ended in such an ugly way. I
was able to have closure with it all and then move on, so I felt lucky for that experience. Yeah.

And then in ’91, later in that year – when I was feeling, probably, at my worst, just because, you
know, witnessing your partner die of AIDS in such a nasty, blowout way. And like I said, there
was kind of a trail of financial destruction left in his wake, and stories I heard afterwards of who
he’d burned. And it was like, “God, not you too.” It was a low point for me. But then I went on a
– Vancouver’s very first festival of fireworks – gay boat cruise. The Royal Britannia was rented
and they went into English Bay to catch the very first fireworks in 1991. They were enjoyable
back then. They’ve become such a curse to me now since I live in English Bay. [laughs]
Anyway. So, I met this very handsome, sexy man on the boat in ’91, and… when was that? July
– I guess that would have been July. So, I didn’t mourn for very long, ‘cause that was May that I
got the ashes and I met Robert in July. And we started a romance and, you know, disclosed our
HIV status to one another pretty much right out of the gate to get that, you know, out. And he
kind of saved me from myself at the time because he had just come from living in a log cabin up
in – outside of Squamish in Paradise Valley – to detox, to come off drinking too much, drugging
too much. And he rented a little log cabin on the property of a mutual friend – well, someone that
became a mutual friend – and he spent a year there just to, kind of, find that Zen place, to deal
with his HIV status in his head and live a simple, clean life. So, he’d just returned to Vancouver
– only been in Vancouver for about a month – and was on this very holistic – “I don’t drink, I
don’t smoke” – path. And it was very easy for me to… have a turn around. You know, I was
smoking too much, I was drinking too much, I was feeling sorry for myself. I was still on my





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pathway with my career but feeling kind of lost in how this was all going to play out. And then
he came along and it kind of changed… my direction… which is great. So, we ended up moving
in together, and we were on this very path of empowerment, so it was a real turn around for me.
And he was working in the hotel industry – he was a bartender – and I was working as an
insurance agent.

Then his mother calls us – he was Italian, first-generation – his mother calls us and says,
“Roberto! I want you to move back to…” you know, their family homestead on the East Side.
Why? Because she was living there with his two brothers who were dealing drugs night and day
out the back and front door of their house, driving her crazy and, you know, putting her in living
in their drug den. So, Robert goes, “Well, do you want to move?” “No” We were living in a – we
were renting a very nice house on the West Side at the time. So, I said, “Well, I’ll go look at the
house and see.” So, we went over one evening and… I met his family, and his father had long-
since deceased. And then there was this ugly – it was just like a simple bungalow – and his father
built his house – and ugly carpets. So, I’m sitting there in the corner. I pull up the corner of the
carpet to see what was underneath, and I just about died and had gone to heaven. The most
beautiful hardwood floors I’d seen in my life were underneath this ugly carpet with the dark
inlay in the corners that interchanged, and they were pristine. And when I saw those floors, I
thought, “Yeah, I think with a bit of work, I could live here.”

So, Robert cut a deal with his mom, that we live there cheap - $500 a month. She was moving
out. The brothers were being kicked out. And then we were going to do a renovation on the
house, which we did. So, we arrived with the moving truck. [laughs] Robert and I go in. His
brothers are still crashed there. All of the furniture that was there the day before is still there. It’s
like, “Oh, is it today you guys are moving in?” Robert said, “I’ve called you every day for the
past week to tell that we’re moving in on the Friday. What the hell are you still doing here with
all of your furniture and all of your junk?” [laughs] So, that was a struggle. So, we renovated the
house. I worked day times; he worked nights. We hired a carpenter handyman, so Robert was
with him in the day time doing that, and then at night I’d come home and vacuum and clean up,
and paint or whatever.

So, the whole process was kind of exhausting and stressful – renovations are always stressful.
So, we survived it, but it took a toll on our health, and especially Robert. He started to lose
weight and… you know we – this is ’92… turning to ’93. And again, more friends are getting
sick. You’d see them on Friday. They’d be dead on Sunday, and the ones that were dying like
that [snaps fingers], it was PCP pneumonia, which people contract and it would take them really
fast. It would be like three, four days in the hospital and they would die, and it was horrible,
because they could look fairly healthy, contract PCP pneumonia and be dead within a week. It
just – it just filled people, their lungs, so quickly with fluid, and they couldn’t treat it fast enough.
The drugs were always, like, far behind the progression of the disease. And, of course, with
depleted immune systems, you know, diseases that may move slower were moving much
quicker. So, just to that point and the PCP, they did come up with a thing. It’s like, okay, one of
the treatments is the Septra, which – if you’re not allergic – works wonders, or the pentamidine –
aerosol pentamidine. So, they started thinking, “Well, if this is what we treat people when they
get the pneumonia, why don’t we start giving it to people before they get pneumonia as a
prevention,” kind of like the PrEP. “Take this now and then it will give you a, you know, a





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protection against pneumonia.” So, I was on Septra and I didn’t have the allergic reaction, and so
I never got the pneumonia. And I think Robert was – I’m trying to think if this was before or
after – anyway. I ended up – that probably saved me from that for years, because I was on Septra
for about eight, ten years.

But I noticed that we both were beginning to come up with stuff. I was having the occasional
night sweat. He was having night sweats. We weren’t sick, but we weren’t – we were kind of
verging on feeling not a hundred percent, and for a couple guys in their early thirties, it was like,
we weren’t feeling as well as we should. And, again, the stress definitely had an impact. So, I
said to Robert, “Well, being the insurance guy, I want to look at your sick leave plan and I’m
going to look at mine. I’m going to dig it out and let’s see if maybe we can look about, you
know, getting out of the workforce and going on leave.” I mean, we had lots of friends that were
– when they were diagnosed HIV positive were – boom – all of a sudden, they were told to quit
their jobs and start planning for their death. And I have several friends that are still alive that did
exactly that, like, within a week of being told they were HIV positive, and they’re still here. And
they just stopped their life and went on the Provincial system and are still on it, and are very
regretful. It’s like, “Fuck, I could have worked another fifteen years. I still could be working.”
[laughs] I have one friend that’s never been sick. [laughs] And he left the workforce in 1987
when he was told he was HIV positive.

Anyway, I was HIV positive seven, eight years at the time; so was Robert. We were diagnosed
around the same time. So, I was thinking, hey, we’re approaching that ten years. So, I did the
math. I said, “Your sick leave plus my sick leave equals enough for us to quit the workforce.”
So, we did, and my – my hope was that we’d have a few years of retirement, throw all those gay
dinner parties, and travel, and do those things that people do in retirement and in good health.
And we did. We went on a few cruises. We went on a gay cruise. We had lots of dinner parties.
And then, Robert started to get sick. In fact, the last cruise that we went on – we went on, I think,
three cruises, and of course you book them six months to a year out – and when I booked them,
he was well enough to go. And by the time the cruise came around, it was really dicey as to
whether or not we should have gone at all, and, in fact, because he was becoming so frail – he
just became really frail. He was a thin man to begin with, and he just, you know – for him to lose
ten pounds was significant on his frame. So, we went on our last cruise, but yeah. He started
coming up with little things – gastrointestinal things, and vomiting, and sweats – and his was
mostly wasting. You may have heard that one of the things was wasting syndrome. So, he – and
there was no specific, well, what’s from – like is it a virus? No. So. his wasting syndrome, it just
kept shrinking and shrinking and shrinking. And he got really ill and, you know, shaved his head,
and he looked like he was dying of cancer at the end. So, we had three great years and then the
decline, and then he passed away in ’96. And, you know, again, we had friends in community
that were dealing with, you know, those same things. He had a large circle of friends and I had a
large circle of friends, and they were coming in and out of our lives at this time. We went to, you
know, memorials and such, and I was still going to the support group. Again, I always felt that it
was a very important part of my support. So, Robert passed away in January of ’96. I was quite
sick at the time, myself. I’m going to skip to this and then I’m going to go back and cover some
of the other things, when I was volunteering in the buddy system and I had…

BK: Sure. Absolutely.





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DD: This is kind of the partner part of the story, which was, you know, significant – probably the
most significant to me. So, in late-’95, I got my first KS lesion, which was like a purple a mark
just here [points at forehead], maybe the size of the pen thing – just small. And I, “Oh my god,
what’s that? I don’t remember seeing a mole there.” And then it started to grow a little bit and I
went in to my doctor, and the would do biopsies – when you got your first purple mark and you
didn’t necessarily know what it was, they would take a little piece of it and send it into the lab.
And then come back and give you the good news, “Oh yes, that’s Kaposi’s Sarcoma.” “Okay,
well, what can I do about it?” “Well, we can liquid nitrogen it now and see if that does
anything.” I can’t recall if it did. But that was just the first signs of it and then I became covered
in them. [laughs] All over my face, my head, my ears, my eyelid. I had this big kind of purple
growth that started closing my eye. I had it in on my arms, my legs. So, the treatment I was
getting when it started to proliferate was chemo and radiation at the Cancer Agency. Then, it
started – I got it in my throat, so I had trouble swallowing. And then it was also in my lungs, and
I had trouble breathing. So, at this point, let me see: I had trouble breathing, I had trouble
swallowing, so I had trouble eating; I had trouble seeing because my eye was closing because of
this. It hurt to breathe. Like, to take a breath, the KS was, like, coating the inside of my lungs.
So, the chemo and the radiation were, kind of, external treatments that were, like, throwing a
thimble on a forest fire. They were very, like – something would shrink for a day and it would
kind of… A week later it would come back. It’s hard to liken how giving somebody a treatment
when somebody – when something is raging – the ineffectiveness of it. [laughs]

So, I was – Robert died and I was, like, in this condition of being in poor health myself. In fact, I
was getting radiation treatment at the Cancer Agency for lesions when he passed away at St.
Paul’s. And I was very distraught about that because when the radiologist booked it, I said, “I
can’t be here five days a week for these treatments. My partner is in the hospital and I don’t
know – he could pass away at any time.” “Oh, no, no, no, no – you’ve got to be here and this is
really important.” So, I took their word instead of my gut’s word and was angry, but yeah – he
passed away, but I was about to go from my treatment to the hospital, found out that he’d passed,
but I was… It was a very short time that I missed him, and I really still felt that he was with me
when I went in to see him. But yeah, so that was a rough time.

So, I went into palliative in the Cancer Agency, ‘cause they have rooms there, and… the doctor
came in when I was there and said, “Oh, they just released some medication that they think is
going to stop the virus.” And this was in ’96, right - March. And that’s when the new medication
had been discovered, that this is the one that’s going to do the trick. So, they hadn’t released it
into the public yet. It was the Crixivan, and d4T, 3TC – the early ones that were really rough on
the body, but they actually supressed the virus. So, they started giving me that while I was still
there undergoing treatment. Well, within a week of receiving that med- those meds I took four
times a day, and I was taking about sixteen to twenty pills a day, plus my treatments. My – the
treatment that I was taking all of sudden started to work – the chemo started to shrink things, the
radiation began to make things disappear for the first time in like, you know, six months. And a
couple of weeks later, I was released and I was given the medications and “We think you might
make it.” And I did.

BK: It’s incredible.





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DD: It is.

BK: It’s incredible.

DD: Yeah… So, when I came back, you know, from that experience, I still was kind of beaten
down, as you might think. So, I – my parents came up for Robert’s funeral in January and they,
you know, lived in Ottawa, so I said, “How do you guys feel about me maybe coming – moving
home for a year, just to recover and recoup?” So, they said, “We’d love to have you.” So, I
moved back home when I was like – what… thirty-eight. So, as a thirty-eight-year-old grown
man, I moved back in with my parents in Ottawa. [laughs] Which was a wonderful thing for me
to do. You know, Mom’s home cooking, and not having any responsibilities or worries really
helped me heal, and within a year – I was there for a year, and I started exercising and I gained
twenty pounds, and… You know, from being really sick, it took a while for me to, kind of, come
into my full health. And within a year, I was like, “Okay, time to go back to Vancouver.” So, in
’98, I returned to Vancouver and started a completely different life. Yeah, so, here I am today.

BK: Wow.

DD: But going back to that era, I remember when I started volunteering at the Vancouver AIDS
Society – is that what it was called? They had buddy systems and I knew I was HIV positive.
They put with a fellow called [name], and I would just spend a day a week, or two afternoons – I
can’t remember how much time we spent together. But this [name] was a professor at [a local]
University, and he was a bit of a wingnut, just because he was a bit, you know, crazy. And he’d
been on a lot different talk shows throughout Canada, because he was one of the first persons
that had come out saying “I was HIV positive and I now have AIDS” at a time when it was so
stigmatized and so feared that he was, like, one of the few people in the whole country that
would say that they had HIV/AIDS and was willing to talk about it in front of, you know, an
interview or a camera. So, he was on, like, CBC, he was on CTV, he was on – Barbara Frum
interviewed him. So, he was a bit of a celebrity. And, you know, I’d see him on these interviews
before I ended up just being his buddy, and it was just, you know, per chance. And it was like,
“This guy is showing the face of HIV/AIDS to the country. Oh my gosh. We will all be
doomed.” Because the things that would come out of his mouth were so… It’s hard to describe.
He was just completely outside the box – there was no box for him. So, to have him be the face
of AIDS – this was before Doctor Peter. [laughs] It was like, “Oh, god. I don’t know if he’s
helping the cause of if he’s scaring the rest of us into the HIV stigma closet.” So, when I was told
I was going to be his buddy, I was like, “What!? Who!? [laughs] You’re kidding.” It was like a
karma…

BK: What are the odds?

DD: It was like, “You judgmental little bitch. We’re going to fix you – buddy you up with this
fellow.” [laughs] Yeah, so I became his buddy, and he dressed very outrageously. So, when we’d
get on a bus to go to one of his appointments, everybody would look at him because his clothing
was all bright and colourful and the different crazy hats he wore. He was – like I said, he was just
a unique person, and I was [laughs]… a lot more stayed than that, and somewhat, you know –





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not wanting to be noticed on a bus full of people, or not wanting to be noticed in a crowd. That’s
never been who I am. So, to be buddied with him, who garnered this attention, was a test for me,
I must say. Within six months of being his buddy, he passed away. So, I don’t think – I didn’t
buddy after that. [laughs] It was like, “No more buddies.” But I did come and volunteer at AIDS
Vancouver as a volunteer coordinator kind of person. So, I would interview people coming in
that wanted to volunteer in the organization – had them fill in the paperwork and answer a bunch
of questions and tell them about the opportunities – which I thoroughly enjoyed. And I did that
only for about six months, I think – and this was one of things I was fuzzy on, was like, was that
in the early nineties? Was that – I think that was after Robert died – or Andre died. It was before
Robert passed away. I think it was when I went on sick leave, that’s when it was – yeah. I had to
do something with my time. I wasn’t sick sick. Like I was saying, we were presenting symptoms
that we knew in the long-term would – you know, it’s coming, it’s coming. It’s not quite here –
we still have, like, some life left to live. So, that’s when I did that volunteerism…

Phewf. I’m just like, “What am I going to talk about?” [laughs]

BK: That’s a lot. There’s already a lot there.

DD: Yeah, so community was – I’m not marching in marches, not being an advocate, not
being… going to… Yeah, that wasn’t me, and I think, primarily, it wasn’t me because I was
working full time, I was dealing with an ailing partner at home for a good deal of that decade
where the advocates were fighting, and kind of treading water for my own maintenance of
health. So, I felt there was enough on my plate that I couldn’t really be thrusting myself out there
fighting for anything, but I was certainly open to… accessing things that, you know, would be
helpful, like the support group.

One thing I did do that I – it’s been validated to me, the reason that I’m still here today, is that
Robert and I declined the AZT monotherapy. And it was, I think 1994. There was an
International AIDS Conference, as there was every year at the time, and there still is, in
Switzerland or something, or Zurich – it was over in Europe. All of the doctors went and the big
push, the big revelation, the big “this is going to be the one” was AZT. So, all of the doctors left
this conference and went back to their respective communities throughout North America and
around the world, and told every HIV patient, “You’ve got to start taking AZT. That is going to
save your life.” And we said, “No.” “Oh, you can’t say no.” “Yes, we’re saying n-.” “Well, why
are you saying no?” We’d already known people at the time who had died of HI- - AZT toxicity,
you know – so we saw… You know, it was helping some people for a little while and then… So,
I mean, it had already been kicking around the community for long enough that we could kind of
make our own – formulate our own opinions around what we thought about AZT. And Robert
and I were doing a lot of holistic things at the time, and this just seemed like a toxic pill that you
want to give us… no guarantees. So, we said, “No.” And it’s funny, it put us at odds with our
health care at the time because it was the, you know, “We’ve got this thing that’s going to save
you and you’re saying no. Okay. At your peril.”

So, what happened of course is that years later, when the other drugs came along, they realized
that AZT could not work to supress the virus on its own. It needed some other drugs to help.
Those who had had an initial immune response to AZT and then kind of had the fail – there was





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the response and then the fail – when the better medication came along, they didn’t have the
response that those that were AZT naïve had. It was like the immune system already kind of
responded and then it failed, so then when the better stuff came along, there wasn’t the – it had
an impact on the future treatment in a negative way, unfortunately. So, because I hadn’t taken it,
when that medication came along, it was just amazing how – again, you know, I was in
palliative. I was dying. And, you know, my KS all vanished – it came out of my lungs, off my
throat. My eyelid was radiated twice, so my eye has been impacted, but… It was like, “Oh my
god! You’re responding so well to this medication.” It – I was – it was quite remarkable even
within the Vancouver scope of how people responded to the medication – how I responded. But
then, my doctor my validated, a number of years later, said, “You know what, you so made the
right decision by refusing,” my same doctor that I still have today said, “you made the right
choice.” So, can you imagine, that something as simple as refusing a medication…

BK: Saved your life potentially.

DD: Yeah.

BK: We’ve heard a couple people call, I mean, the cocktail that emerged – it was like the
Lazarus Effect. People coming back from the dead almost.

DD: Yeah, that’s me.

BK: And it’s just incredible.

DD: There’s a documentary – did you see it at the Vancouver Film Festival a couple of years
ago? I think it was called The Lazarus Project or something, and it followed a bunch of people
like myself that had that experience, that are now living… It was a San Francisco-based thing,
because there’s lots of those folks like me there, and also in Palm Springs.

BK: I don’t think I’ve seen that, but that sounds like something I need to watch.

DD: Yeah, there’s a few that have come out that follow them. So, I went to see those movies
and, I tell you, they weren’t uplifting stories. They were people that had survived but were
bearing the burden of survivor’s guilt – sense of purpose: you know, I survived the plague and,
you know, now I’m living in social housing. And my quality – I don’t have a lot of friends and
I’m isolated, and I mean, these were their stories that they were presenting. I mean, they chose
those people, but all these stories in the documentary, I left thinking, “My god, I’m so grateful
I’m none of those people living – living in that world.” And I know – I know that the impact on
our community has been huge, and I’ve always referred to the disenfranchised long-term
survivors as the walking wounded in our community. You know, because I’ve been volunteering
in the community for many years now, ‘cause after ’96 – or ’97 when I came back from Ottawa –
it’s like, okay, I’m back. I need to do something. I have long-term disability, I’m not going back
to work.

So, you know, I’ve been volunteering, and there’s been a lot – I’ve witnessed a lot of angry
people living with HIV, a lot of bitter people living with HIV, a lot of entitled people living with





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HIV that expect everything to just be delivered to them and wrapped up in a bow. I’ve seen it all,
and it’s… And not to be judgmental, I’m thankful to be none of those people, and a lot of them
have since passed away. And I could almost see it. Like, when I volunteered at Friends for Life
at the welcome centre where people were coming in for wellness therapies, which I
tremendously benefitted from, myself. And then, I felt like I wanted to start giving back by
volunteering there. So, working the welcome centre, you’re seeing everybody come through the
organization. And, you know, people would want to vent, you know, and tell their angry stories
of what they can’t do or can’t get or can’t access, or you know, all coming from a place of lack –
always coming from a “I don’t have.” Always coming from a void – they’re living in the void.
I’m like, “Wow, that’s so weird. I access those same places and services, or whatever, and
always have a different experience. I always feel grateful and…” [laughs]

BK: Why do you think that is? I mean, like, why… I mean, I think you’re right, that there are a
lot of long-term survivors who are still absolutely really struggling in the present. Like, why… I
guess?

DD: Well, I think that there’s a damaged goods piece. It’s like, “I feel like damaged goods,” so if
I’m really attached to feeling that way, then that’s how I’m going to be, and then that’s how
people will treat me. So, of course, I’m not getting the attention I need, or meeting the people I
want to meet, or having the dates I want to have, or having the sex I want to have, or… whatever.
So, for me, it all – all started from a – it starts from how people have been impacted. Everyone
has been impacted differently by a disaster or disease or an experience, right? So those that are
impacted that go in and get angry and bitter, well guess what? That’s now your footprint in the
world and if you’re having those experiences, look inside and then, you know, see how that
looks.

I facilitated a support group of gay men when I was at Friends for Life, and I looked around the
room and these guys were in their thirties and maybe up to mid-forties. I was probably early-
forties at the time. And everybody’s angst at this support group was, “I can’t meet anybody
because I’m HIV positive.” So, they were – they were living their stigma and feeling angry and
bitter about, you know, the stigma of HIV. There was no “undetectable” back in the day and
there was no PrEP back in the day, so still being HIV positive put a lot of barriers up for meeting
people. And, you know, when do you tell somebody? You know, first date? Before sex? After
sex? You, know, so there were a lot of issues, and I’m sitting there facilitating and thinking
“Well, I’ve been HIV positive [longer] than all of you. I’ve lost two partners. And I have an HIV
negative partner and we’ve been together for a number of years. So, I find that interesting that
you’re saying you can never have that and you’re sitting here in a room with somebody that has
that, if that’s your goal. And why is that?” [laughs] It wasn’t that I was the most attractive in the
circle of support – I was not. There were some young attractive, young-thirties guys there that I –
were hot. And I’m thinking, “Oh my god, you’re so sexy and you’re complaining about not
being able to meet anybody,” or whatever. So, again, coming from – showing how stigma has
effected them. It’s a powerful thing. And I’m not judging it. I was – I ended up putting themes on
the discussion group, so that we could all get to a better place by the end of whatever we were
talking about. We’ll start here and hopefully end here. Then everybody leaves feeling uplifted
and more empowered about, you know, how their life is going to look. So, I did a theme-based
thing around different topics that gay men live with. But, you know, I know that my attitude and





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my approach certainly affect my own resilience – you know, getting through this. I don’t feel as
damaged as a lot of my peers that have been through similar experience.

BK: Is that like a form of personal resiliency, or… I just wonder what that is. It’s hard to put into
terms, but…

DD: I think it’s resilience… Yeah, and like, I’m married to an HIV negative husband from the
States, so, you know, the husband that I’m with now for fourteen years, I imported from another
country. I mean, the obstacles that most of us live with are self-imposed. [laughs] That’s how I
think – that’s how I think and therefore that’s how I live. So, yeah, that’s why I enjoy giving
these leadership trainings, because it’s like, okay, I’ve been – I have this life, so how can I now
show other people that they too can operate in a different way that brings them more things that
they don’t feel are available to them through how they are. So, it’s skills-building workshop, so it
certainly speaks to me wanting to give people the opportunity to think differently and therefore
live differently.

But, yeah, so I had to – I had to start limiting my exposure to a lot of my cohorts, because of the
negativity and the, you know, I can only be around that for so long. So, even volunteering in the
HIV community, I kind of had to take a pass from, like – from a service level of providing
something, because again the entitlement piece. When people have been receiving, “Oh, I’m
dying of AIDS. Give me everything.” You know, and that – because B.C. and Vancouver has
been – initially had such a strong response, that’s kind of how that looked. “You’re HIV
positive? You can quit work tomorrow. I’ll have a cheque for your CPP and your provincial
disability in the mail next week.” Oh, okay. “We’ll put you on a list for housing. How long have
you been HIV positive? Two weeks? Okay, well, by next year, we should have you in housing.
Oh, food? Okay, here’s a list of all the places you can go for a free lunch. Here’s a list of the
places you can go for groceries. Here’s a list of all the…” So, a lot of people that jumped on that
gravy train found themselves years later in a place where they had no empowerment. They’d
given everything away. They were just used to standing in lineups to being given things, or
showing up for things to be given to them. It’s like, okay… so, how do you feel at the end of that
experience?

So yeah, that’s never been my story; I’ve had a different story. So, you know – so because I feel
I’ve had a different story than a lot of my peers who are, you know, reliant upon those things that
– I’ve had a different experience. But I’m certainly enjoying going for acupuncture, massage
upstairs at Positive Living again after years of not receiving any of those things. [laughs]

BK: Those are nice services to offer, that’s for sure.

DD: Absolutely.

BK: So, sorry… I was just going to ask, going back a little bit again now here… You mentioned
the support group at Positive Living… and I’m just curious about where else were you finding
support? You’re talking about – I mean your story has a staggering amount of personal loss
and… Where were you finding support in those moments… besides the support group? Were
there other things out there?





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DD: Um, fam- - I was out to my HIV status with my family, so… You know, they were up to
date on my health challenges as they presented. They were up to date on my partner’s health
challenges as they presented. You know, Mom and Dad came out from Ottawa and stayed with
both Andre and I, and Robert and I. And… So, I felt very supported by them. You know, I have
– because I’ve been in Vancouver for so long, I’ve got friends that go back thirty years that are
HIV-negative that are still a part of my friendship circle, so they were supportive for me.

In the early days, I had a lot of airline friends, because when I worked in Ottawa, I worked at the
front desk and I worked the evening shift as a front desk clerk and then as a manager. The
Vancouver airline crew would come in at eleven, predominately, you know, composed of two or
three gay men and a couple of women. [laughs] And I was off at 11:30[pm] and they were on a
different time zone of like, it’s only eight o’clock for them. And I would say to the gay ones,
“Hey, I’m going to Hull for drink at the bar at 11:30. If you want to come, come back down – get
changed, come back down to the lobby and we can all go together.” So, I created this amazing
[laughs] group of Vancouver flight attendant friends that, you know, we went and partied
together, because that’s what I did back in those days as a twenty-something. I’d work my
evening eight-hour shift and then I’d go and drink and dance until three in the morning and then
I’d sleep until noon. And then I didn’t have to work until three [pm] or four – yeah, three to
eleven. So, yeah, I could party all night and then, you know, sleep until eleven or noon. So, that
was amazing that when I came out, I had quite a circle of airline friends already out here.
Unfortunately, they were also the cohort that was very – hit hard with the HIV, and they were
some of the friends that I lost at first, you know. Because not only were they Vancouver-based,
and of course the virus was working its way to the gay men of Vancouver, but they were
traveling to all these other places where, you know, they’d be meeting up with guys at their
destinations and having those experiences, so… Yeah, that was hard. But, yeah my circle of
support through friends.

And again, if – through most of my story, I’ve had a partner, so I’ve had a partner that’s been
supportive, and, you know. And their families. Like when – not Andre of course. He just had a
mother who came to fetch him at the end. But Roberto – you know, large Italian family – they
were there for me through his illness and long afterwards, bringing me food, and they became a
second family to me. And I’m going to be reconnecting with them again these years later
because Roberto’s sister worked at the Cancer Agency – works at the Cancer Agency – and she
saw my name at some sort of appointment list when I started this cancer journey and tracked me
down [laughs] and then would come and find me every day of treatment for seven weeks. So, she
said, “When you’re better and able to eat and talk, I want you out for a family dinner and have a
reunion, catch up with everybody.” So, I’m excited about that.

BK: That pretty incredible. I think a lot of times, when we tell this story, family is often
something that’s – like the biological family is often not part of that support circle for a lot of
people.

DD: Right.






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BK: So, it’s really – it’s a bit unique. Your experience of having a lot of support in that sense is
really great for us to capture.

DD: Yeah. Well, that may have also given me some of the tools to have different experiences.
Like experience the same thing as a peer but come out the other end in a different way and
maybe a less despondent, dark, despair… way.

BK: Yeah, absolutely. Did you find… I mean you mentioned your faith a little bit. Did you
manage to find any support in any regard there?

DD: When I – when my health was really declining around Robert’s passing, that was pretty
dark. I mean, not only was I going down the tubes, I mean… and then Robert died. I lost – I lost
my fellow – like we were doing this together. We were battling this AIDS thing together, right?
We were doing our juicing and our organic foods, and we were living as healthy as possible. So,
that made it much easier for us to kind of do that together, supporting one another. So, with my
being sick and losing him, I was like ready to check out. And of course, that didn’t happen. But, I
had him buried at a Catholic Church and I was very spiritual at the time. I found that as my body
diminished, the spirit part of me grew, and I often found myself praying and meditation. I was
going to church when I could. But it was interesting to me that that was such a preparation for
death. You know, as my body just started fading and failing and shrinking – like the entity of my
body was just going away – but the space that was being replaced was my spirit. And I felt very
spiritual and I felt very spirit-connected in a way that I’d never felt in my life. And I was kind of
ready to go. I was like, okay, I’ve done everything here and I’m feeling connected now. I felt like
a bridge was almost happening to the other side.

And when I was in the hospital at the Cancer Agency, I heard a very distinct voice about two
weeks in, and the voice was “It’s not your time.” And I remember sitting up and, “What!? It’s
not my time.” And then I ruminated on that for a couple days and I’m thinking… And there was
– I think there was a crucifix in the room – there might have been… I don’t know. But for me,
that was like – that was the voice of God I just heard. He told me it’s not my time, so I’m not
going to die now. And I think within a couple of days I started getting that dramatic response to
the medication and was out of there in a week. So, it was very – it was a very surreal experience
and, you know, I’ll never forget it. [laughs]

This time through cancer that I’m going through now, my body hasn’t diminished to that point
where I’m having that same experience… But I’m still, you know, counting on – on, you know,
that same sort of outcome at the end of this – also it’s not my time, even though I haven’t heard
that in that way. But I felt very spiritual and as I came more in to my physicality and as my body
increased in size and muscles and strength, and whatever, the spirit part of me did shrink, and it
kind of became a small part of me that hasn’t – a smaller part of me that hasn’t returned in that
same way. And I found that an interesting journey. And I don’t know, if I ever find my way in
that path again, I hope that the same thing happens in the same way, because it did really balance
it out. It’s like, who I am is not my body. So, when my body is failing with disease, that’s not
who I am. So, that – that part of me, like the who are we – the “who are we” part grew and the
body part shrank. And I was always very cognizant of that’s – that’s not the entity of who I am.
So, that was a cool realization, because I think when you’re strong and in your body and you’re





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healthy, you think, “This is who I am.” But when that’s taken away, you realize that’s not who
you are. Who you are is your spirit, your energy, your thoughts, your… you know – the
uniqueness of who each of us are, so… That was cool.

BK: That is very cool.

DD: Very existential, isn’t it? [laughs]

BK: It is. No, it is. Yeah, I just want to make sure we didn’t miss anything of that nature, just in
case that was kind of important in your journey. So, I’m glad we got a little piece of that, too.

DD: You got the “this is not your time” piece that I forgot about and that was like, oh yeah.

BK: It sounds like it’s a big piece of the story. You’ve talked a lot about community responses to
the epidemic. You’ve talked about AIDS Vancouver and Positive Living, and you briefly
mentioned activism. Is there anything else you want to – you don’t have to say anything else
about that, but you’re welcome to.

DD: Well, there was… I want to say that there were forums happening in the West End. The
West End Community Centre was – was a space that there was forums that were happening
there, where there would be a stage with a panel of doctors, and people from out of town, where
San Francisco and New York. And, you know, lots of chairs with – you know, a sea of gay men,
you know, quivering in fear. So, you know, there was an amazing community response and I did
partake in, you know, having my bum in one of those seats, you know, and asking questions.
And, you know, there were always lots of questions, and the answers were always, you know,
everything available at the time. So, Vancouver’s response was not to stick their head in the
sand, but to… I really feel we had a world-class response to it. I mean, whatever was happening
in America, like at the top end of keeping the community informed, was happening. So,
whenever you see those documentaries of what they were doing in New York and San Francisco
and Los Angeles, we were doing it here on a smaller scale. So, I felt grateful for that.

I would read everything I could. I subscribed to Poz magazine, which is now probably thirty…
no, twenty-something years now, where you know there would be a cover of the face of
somebody on the cover, and then the stories. And Sean Strub, the editor of Poz magazine, which
is a glossy magazine that has been around since the nineties – late nineties – he has a similar
journey with the KS as me, so later in life, I felt a kinship with him. And, you know, he’s still
around but he was covered in KS lesions at one point. But yeah, reading those personal stories
were – and they were always empowerment stories. They were never interviewing somebody
who was “Woe is me.” So, I mean, those were the stories that I – resonated with me. So, I was,
you know – I’ve always been a hopeful person, so, you know, to not lose hope was… needed to
be fed by something. Doctor Peter’s diaries were very important for me to catch every week. He
was a great example of somebody trying to demystify the stigma of living with AIDS, and I think
he did that so gracefully. So, I mean, I was like a sponge – like… as much as I could be to absorb
everything I could about information, about the drugs.
Like, even the support groups, I mean – so much information would come out and there were
some very intellectual-type people that kind of would go into a whole scientific piece, and it’s





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like, “Are you going to talk about this twelve letter, numbered drug.” You know, “123Z517 is
being studied right now in Zimbabwe and they’re showing that it’s a good effect on baboons.”
And it’s like “Oh, for fuck’s sake. I have to listen to this for half an hour.” But I mean, you
know, there was a lot of that too in absence of, you know, nobody had good news, so…

Yes, so, support was, you know, buying Poz magazine with uplifting stories, real people, real
journeys; Dr. Peter; support groups; circle of friends, family, and partner. So, I felt well-
supported. And good medical care. I mean, I’ve always had doctors who were on the forefront of
all of this with HIV, from the beginning, so that’s an important component. I mean, having
access to a primary care physician that’s – patient load is primarily HIV positive people has been
an important part of this story… because, you know, when you hear otherwise – or I hear
otherwise in community and through my leadership training, when people don’t have access,
they have different experiences and not in a good way. [laughs] So, you know, again, living in
Vancouver, living in the West End, having access to St. Paul’s on the forefront or cutting edge of
this whole story of HIV, with Julio Montaner, you know, heading the pack with, you know, his
work… I’ve benefited from it all, you know.

BK: I’m just thinking back to the story you told a while ago, but – about refusing to take the
AZT monotherapy, and I forgot to say this earlier, but the thing I love about that story is the
ownership over your own health that you were taking. And the knowl- - like people with HIV
were experts on their own health, especially at that time when there weren’t good treatments,
there weren’t… And I think that’s such a – that’s a… I’m not sure if it works in the same way
anymore, but it’s… To me, that’s a very powerful message as well – the degree of knowledge
that people had on this and their ability to make their own decisions about their health.

DD: Yeah, it was a unique experience in that way because, you know, at the time, there wasn’t
any long-proven anything. So, anything that was being recommended or suggested still came
with a, you know, an unknown. It’s like, “Really? How long has that been around? Oh, six
months?” And, you know, any studies they were doing were a matter of weeks or months. But
the rate of death was becoming so rapid that, you know, the straws that were being pulled that if
they had any effect were being touted as, “Well, you’ve got to do this. It will, you know, do
something.”

BK: It will give you another couple of months.

DD: Or, you know, “What have you got to lose? We’re all going to die anyway.” There was a lot
of that mentality being dished out, not from the medical community necessarily, but in
community. “Well, we’re all going to die anyway. So, why don’t we take this or why don’t we
take that?” Yeah, I’ve probably never had that thought – we’re all going to die anyway. Those
are other people’s thoughts, they weren’t mine. [laughs] Although that may be true. I have heard
that we all will die. [laughs] But it’s not something I – it’s not in the front of my brain, even now.
[laughs] I don’t find out until – if I’ve cleared this oral cancer I’m living with until the end of
December, but I don’t even have that thought: “We’re all gonna die anyway.” I actually don’t
even doubt that I haven’t cleared it. It’s like, “Yeah, I don’t have cancer.” I have side effects
from radiation treatment right now, but I don’t have cancer.






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BK: At least from your story, that kind of positive outlook has such a huge impact on how your
health plays out.

DD: Yes, I agree. That would be my message. [laughs]

BK: We do want to ask you about any lessons learned or messages you might have for either
people that are newly diagnosed now – younger generations – but also for health care providers.
So, those are two different questions. But any – I guess, any advice for newly diagnosed folks?

DD: Yeah, don’t refuse the medication. Oh… There’s one more thing I want to add to the other
piece if you don’t mind.

BK: Of course. Yes.

DD: Back when the medication came out in ’96, within six months, it started showing its horrific
side effects in the community. So, wasting syndrome, where people’s cheeks disappeared – mine
did as well. All of sudden, all of the fat on people’s bodies vanished and we all became these
skinny little arms, big belly, skinny little legs, no butt, wasted face. So, then there became a
resistance to those living with HIV – that could certainly be moving on to AIDS – to take
medication, because they didn’t look like they have AIDS and if you start taking the medication,
then you’ll start to look like this and then everybody will know you have AIDS. So, that was a
huge issue to the medication that did come along and save people’s life. Once the side effects to
that started showing themselves within a number of months… And, you know, buffalo humps –
a big lump on people’s backs – distended bellies… These were – were changing people’s
appearance in a dramatic, unpleasant way that identified people with AIDS. So, the medication
created its own years of stigma that don’t exist today.

The segue is the medications today don’t have any known side effects – they don’t change
anything regarding your appearance or your health. So, yeah, certainly take them and become
undetectable and become unable to transmit the virus to anybody you’re intimate with, and, you
know, keep living your life. Like, there’s no to little change. I mean, that was my approach when
I was diagnosed HIV positive in 1986 when there was no medication. [laughs] If I was diagnosed
today and would be given the medication I would be given today, I would have thought I’d died
and gone to heaven. So, the empowerment piece is very important – that you take ownership on
your health, you make your own decisions. The doctors are only offering you options. You
certainly have the ability to say, “I’ll get back to you on whether or not I want to take that
medication,” whatever it might be. We know our own bodies. Sometimes our bodies give us
information that tests don’t.

I underwent Hepatitis C treatment in 2007, which was a type of chemo and made everybody very
sick and very ill. And, you know, it had, like, a percentage of – like you could take it for six
months or a year, and your odds of clearing the virus after a year were much better after a year
than your odds of clearing the Hep C virus after six months. At six months, I was feeling the shit
bomb that the treatment made me feel, and I told them that I wasn’t going to take the year and
treatment. And I told the medical folks, “Well, I’ve cleared the virus, so why do I need to take it
for year?” “No, you haven’t cleared the…” “Yes, I have.” “Well, no, we want you to…” “No,





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I’m done.” I had cleared the virus. They were recommending I take it for a year and they thought
that anytime within that six-month window after I stopped that, you know, it would show up. It
never did – I had cleared the virus. But I knew. There was something – there was something
inside of me that told me. It wasn’t because I was sick. I intrinsically knew I’d cleared the virus.
So, sometimes our guts know things that even our brains may not know, or have the science to
know. I had no science around how I knew I’d cleared the virus: “Well, what’s your scientific
proof you’ve cleared the virus?” “I don’t know… [laughs]… I just know.” [laughs] So, yeah, the
empowerment piece is there.

Just like now, I know I’ve cleared this cancer. What’s my evidence? I don’t have any, I just
know. I tell you how I know: I know because I’m picturing things in my future that wouldn’t be
possible if I didn’t clear it. I’m picturing things I’m doing in a year. They come to me in a vision.
I see myself doing something in a year’s time, whether it’s in my garden, or in my home, or in a
travel scenario, going, “Oh, that’s neat. I just had a thought of myself doing something, so
therefore I must be okay, otherwise if I’m sick, I’m not going to be here, you know.”

BK: Did you have that type of forward-looking visions… [earlier, when you were battling HIV]

DD: No, my forward-looking vision is, “I’m ready to go to the other side, please.” [laughs] What
other advice? Give back. Participate in something where you’re giving or doing for others. It
reaps rewards beyond things it can, you know – monetary or… You know, to give to others is –
will always make people better people, and also allows gratitude to come in. When you’re giving
back to others that are suffering in a way that you’re not or that you can help them or helping
them in a way that can bring them to a better place through something that you can offer, I would
suggest doing that… Yeah. It can be life-changing.

BK: And then, related: anything you can offer in the way of advice to health care professionals
or health researchers, even?

DD: Are you talking HIV-specific?

BK: I think for the most part we’re still – because this is, you know, do you have any advice for
the way we could maybe improve HIV prevention or HIV treatment in the present, I guess.

DD: Well, you know, I confess to having heard a lot of horror stories on other people’s
experiences through their health care interactions living with HIV. I’ve never had any of those. I
don’t have one story to share about, I mean, having a bad experience. And, again, I find that
interesting. Is it like, something I’m doing, is it something I’m projecting, or is it something that
has to do with perspective? I don’t know. But I think listening to your patients would be my
suggestion or advice, or accepting when a patient declines medication. I think, you know, today’s
day and age is so highly medication-driven through doctor’s appointments. I mean, if you don’t
leave with a prescription for something or other after seeing your healthcare provider, you feel
like you’ve been rooked or something.

I think more – being more open to integrative health alternatives. I think the Western medical
modality is – still has all the doors closed to other options. I’ve been highly engaging in





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naturopathic alternatives while doing my cancer treatments. I mean, cancer treatments, for
example are very toxic. All they’re doing is throwing toxicities and poisons and, you know,
burns at me, so it’s like, “Hm, what else do you have in your tool kit? Nothing.” So, the other
option is go see a naturopath, so I take a variety of supplements to improve my immune function,
my digestive system, my this, my that, my ability to recover from radiation treatments. I’m
coming for acupuncture, I’m coming for a massage. You will never hear a medical say, “Well, I
suggest you look into these alternatives.” Nobody at the Cancer Agency in the two and a half
months of treatments I had never suggested one thing to say, “Well, you will probably have a
better experience with the shit we’re throwing at you if you were to go out and get a massage,
have an acupuncture, take a…” Anything. Nothing. There is no connectivity. It’s like, they’re in
that box there and then there’s the rest of the options over here. And I’ve never had a doorway or
a window open to be offered to go take a look at – go explore the alternative. Why not? We have
Chinese medicine doctors in this city, we have naturopathic doctors, we have Ayurvedic doctors
– you know, we have a variety of things. A lot. [laughs] And never the twains will meet. And the
doctor will say, “You’re doing really well. Is there something that you’re doing that’s different
than my other patients that are taking the same shit that don’t look anything like you or don’t feel
anything like you?” “Yes…” [laughs] “Oh, what might they be?” “Well, I’m doing this, I’m
doing that. I’m taking this, I’m taking that.” “Really?”

BK: Again, listen to your patients, right?

DD: So, think about that for a moment. Like, why – why is there such a disconnect from those
things… Interesting. I mean, I blend the two on my own, but again, without even somebody
saying. Why can’t a doctor say, “This is all I have to offer. It can only do this. You need to do
your part for healing, which, you know – you need to lose thirty pounds and start exercising and
quit smoking. That’s the bottom line. I can only do so much with my twenty prescriptions I’m
giving you for high blood pressure, high cholesterol, potential heart disease.” Whatever, you
know what I mean? I’m just saying that I find that that would be my advice to the medical
community. Don’t get me started. [laughs]

BK: No, I think that’s a really great thing for us to capture, too. I think that’s good advice. I think
I’m just about done here. I just have two other related – no, sorry – three related questions. One
question would be, just on a grand scale, how do you see the epidemic changing the community.
You started off by talking about the vitality of the community and fourteen bars in the West End,
and I don’t know if we can attribute a shift to the epidemic or not, but do you perceive… How
has the community changed as a result of the epidemic, if at all?

DD: Well, I – okay. So, here’s a big change. Back when those of us that were diagnosed with
HIV positive, we all ran to the services that were available for support, so those communities
became very tight-knit and very supportive. So, we were going to get through this together,
through support groups, through these organizations – AIDS Vancouver, Positive Living. And all
that sprung up in support around Loving Spoonful for meals. They’ve all morphed into
something else, because, you know, the virus has changed with mortality and the impact. But
people diagnosed with HIV after the year 2000, 2001, for example, or even beyond, that have
had no community impact – they haven’t seen their friends get sick and die, they haven’t been
sick themselves ever, they’re taking a medication that has no impact on how they look and feel.





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So, therefore, a lot of those gay men have no need to connect with the HIV support community
in any way, shape, or form. They would be never caught dead walking in the door of this
building for anything happening here, or any of the training or support that, you know, these
organizations provide.

So, what is – what happens when you have organizations that do that? You have a community.
This AIDS community has been my life for twenty plus years. I mean, this is the community I
walk in – this is the community of my volunteerism, of my leadership, of my support, of being
supported now. And now I go and I visit everybody on the floor because I know everybody that
works here because we’ve all been together at a forum – at a this, at a that. I feel a connection to
everybody that has been a part of this community, and if I were to just meet somebody here
today I’ve never met before, or somebody new, it’s like, “Well, we’re all a part of something.”
Those now living with HIV in the gay community that are taking their pills and never connect
with any of this, miss out on that. So, what their experience is on how they deal with HIV will be
a complete mystery to me, because they don’t feel necessarily impacted by it. The whole, “I’m
undetectable now. I’m not at risk for spreading the virus.” So, the stigma is hopefully going, I
mean, for all intents, purposes it should be gone now, but for some it still lingers. And then with
the PrEP and the whatever – so, the whole community support for the HIV, I think, is gone. You
know, and it shows in the fundraising initiatives, and the walk, and the this, and the people [say],
“Well, why do I have to give money to an HIV organization. Isn’t that disease taken care of
now?”

So, I mean, even those people that were supporting through attending galas and attending walks
and attending this – while they were doing those things, they were part of the community. They
were part of the community that’s going for a walk for AIDS and showing up at the end. So, that
whole piece in it was a huge chunk. If you take the gay Vancouver community, ninety percent of
that community was involved or interacting in some way with an AIDS – with the AIDS
community, through a friend, a person they knew, a lover, somebody they worked with. And
everybody was impacted by it, so everyone was a part of that community that doesn’t exist now.

So, what’s replacing it? What’s replaced it? A pill. How does a pill replace a whole community
interaction? It doesn’t. So, the fact that, you know, the Internet and the Apps and all of that has
now replaced a lot of the socialization for gay men and opportunities to socialize, I think it’s
become very insular. We’ve all come out of a community where we’re very connected to
everybody isolated in their single apartments, living alone on their mobile App or a laptop on
their knee where they’re watching TV. I mean, while that has its place, it’s not a community
connection and it doesn’t provide any long-lasting impact. I mean, you can spend time on an App
and chat with a few people and feel like, “Oh, well I’m not alone. I’m not in a complete silo. I
chatted to three people on Grindr.” But when you go to bed at the end of the night, that
experience didn’t enrich the person in any way, and it didn’t connect them in a way, it didn’t
provide a date or even a hookup – damn! [laughs]

So, you know, I – to be honest, I’m so glad I’m not a young person in this day and age
navigating the new landscape. I feel like I was in the golden age of – of community forming and
storming, even though it included AIDS. That was part of the storming too, because it really
solidified rights, especially in the States. A lot of the marches were tied to gay rights in tandem





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27

with, you know, access to medication and all of that stuff. You know, we’ve always been a little
ahead here in Canada, but you know, that was the generation I was a part of. So, I don’t know
what the advice is. What… [laughs] What would be… You know, we’re not going to go back in
time. You know, we’re not going to reinvent a different era where people had to actually show
up for a rally or a march or an – like even the AIDS Walk was a kind of a march. I mean, I was
here from the very beginnings of the gay pride parade. It was a march and it was, you know,
maybe 500 people showed up to watch it. Maybe, you know, fifty people were in the parade.
You know, I remember those very early days. I mean, I’m going back 32 years. So, that was a
different time. We were fighting for things, right?

BK: And the people watching probably weren’t suburban families from Langley. [laughs]

DD: No. Or children. And there were no handouts. No politicians.

BK: I think you answered the other question I was going to ask, which was how the epidemic
shaped your relationship, or changed your relationship, to the community. Maybe by way of
answering my last question, you sort of answered that too.

DD: Say it again.

BK: How the epidemic – how HIV changed your relationship to the gay community.

DD: Well, it became my community. I mean, I was not just a gay man living in Vancouver. I was
a gay man that was connected to and a part of the HIV community, and it became where I found
my life’s purpose. I mean, when I came back from Ottawa feeling well, my engagement – not
really knowing what I was going to do with my life as a forty-year-old in good health now, not
working… “Hm, what am I going to do with my time? What am I going to do to feel
purposeful?” I really was lost for a short time until I started engaging – my volunteerism at
Vancouver Friends for Life. And through the impact that I had and the different programs I
started to bring in, and saw what I could do, like you know, then I started to find my own footing
in what my role is in this community. What is my role in this community? Just somebody
accessing services. No. I realized I had something more to give, and that has defined who I am as
a person. So, I’m grateful for that. I mean, if I take away the purposefulness that I found through
my engagement with the HIV community, I wouldn’t have any – nothing to define me as
anything different, like for myself. You know, I define myself as somebody that has been able to
flourish and… You know, access all of the different parts of my personality and my intellect, and
whatever I have is – in my tool chest – I’ve been able to open up and use within the HIV
community. So, I’m grateful for that. Yeah.

BK: It’s – it sounds like, almost, it’s become part of your identity.

DD: Yes, it’s totally part of my identity. Totally part of my identity. You know, you look at
somebody that’s in the workforce and they’ve been a lawyer for a number – you know, twenty-
five years and they retire – or a fireman, or policeman, or whatever – that becomes a huge part of
their identity. Well, I didn’t have that. What did I have instead of that? It was replaced by my
engagement with the HIV community, so of course that’s how I define myself. And it became





“HIV in My Day,” Dakota Descoteaux (November 17, 2017)

28

important that I didn’t just define it as somebody using services, you know. And I realize that for
some people that that is their journey through HIV, but you know, it wasn’t mine. And you
know, I had more to offer and had the ability to do so, so therefore I did. And there’s some more
to give. [laughs]

BK: I think that’s probably…

DD: A wrap. That’s a wrap!

BK: I think that’s probably as good a note as we can end on, but we do want to give you a
chance to – if there’s anything that we didn’t discuss that you thought we would cover, or that
you wanted to talk about that’s on your mind or anything like that around this issue, obviously…
Anything comes to mind?

DD: Um… Not really. Just, you know, I’m watching the HIV communities redefine themselves
and I know there’s a struggle in finding out how they – what role they play now, today in 2017.
And, you know, funding is being pulled back and donations are down, and you know, there’s an
evolution that’s been underway for some time. And I think it’s key that more navel gazing has to
happen within these various communities on how they define themselves and present themselves
to the rest of the world, so to speak. To show that, you know, they still have an important
purpose and it may be very different than it was ten or twenty years ago, but this is their purpose
now, and it still needs support in all sorts of different ways. Rather than retreat and shrink, and I
think that’s what I’ve been witnessing, is because AIDS isn’t on people’s minds, so people don’t
think, “Oh, I should call AIDS Vancouver and see about volunteering down there, or giving them
a hundred bucks,” or whatever. So, as the gay men’s mentality has shrunk around the concern
around AIDS, the organizations are morphing into something else. And I think they should come
out and relaunch themselves in the community: “This is who we are now. This is what we do,
and we still need your support. And it looks different than it did twenty years ago, but if you’re
interested, this is what we need now, and this is what we’re doing, and…” You know. I think
there needs to be a relaunch of that. So, that’s it. Those are my parting words. [laughs]

BK: Anything, that you wanted to…

William Flett (WF): I can’t think of anything.

BK: Alright, then I’m going to stop the recording.

[End, 1:57:54]