Interview with Kim Kinakin

20-05-20-KK.docx


HIV In My Day, Interview 95


Interviewee: Kim Kinakin (KK); Interviewer: Ben Klassen (BK), William Flett (WF)
May 20, 2020

Ben Klassen: Alright, well thanks so much for being here, Kim, and agreeing to share your story
with William and I today. Really looking forward to hearing a bit about your story. Just to get
started, could you tell me a little bit about your connection to Vancouver?

Kim Kinakin: I grew up in Vancouver, so born and raised Vancouver and lived in East
Vancouver, North Delta, Surrey, Burnaby, East Vancouver, West Side, West End, yeah, anyway,
Vancouver. Except for a couple years that I’ve lived in Los Angeles and a few years that I’ve
lived in the interior of BC. I’m 49 and 40 years of those were spent in Vancouver, the first 40
years.

BK: Wow. And how about your connection to the gay community? How did you first start
getting involved in the gay community or in gay life?

KK: You know, to tell you the truth, I think that I was very … I wasn’t really involved in the
gay life as a young person that much. I was very involved in the music community, the punk
rock music community of Vancouver. Which, I mean, maybe historically it was very queer
positive or had a lot of crossovers but by the time I was in that it was still not the most queer
positive scene to be a part of. Of course, I always knew about what was going on that was gay in
Vancouver because you’d go downtown to see shows and a lot of the shows would be sometimes
at gay bars and some of [inaudible] that crossed over would have, you know, gay content. So I
knew about gay culture as I was kind of curious about … but I never really got to be involved in
the gay community as such until I started—well first volunteering at YouthCO AIDS Society
when I first started, and that’s cause the AIDS activism really hit my politics. I was very
politically active in the punk community, and that I liked. As you possibly might imagine, the
gay community was very dance music oriented, and I was very punk music oriented, and it just
didn’t attract me.

Having said that, I think I came out when I was about 23 and by the time I was 24 I already had
HIV. So, I quickly was way more involved in the HIV/AIDS community and I really liked the
HIV/AIDS community because I was meeting people who were politically active and creating a
real sense of community rather than just going to a club or a bar. Having said that, going to my
first gay bar when I was 23 or 22 was, you know, it was Celebrities and I was shocked to be in a
room with that many people who were gay, cause otherwise it was very secretive for me. I did go
to GAB youth services at the time, which is now QMUNITY, and stuff like that. You know,
walked around the block a couple times before I walked in because I was like, ‘I don’t know if I
belong here. Everyone’s going to see me,’ type of thing. And again, while I went and did those
things, it wasn’t like I met gay punk rockers.

So I quickly got involved in YouthCO AIDS society and for myself it was about how could I
queer the punk rock community by being a very vocal person in the scene that was out and
talking about being gay. So that was kind of my channeling, of like okay, if I don’t see myself in



the gay world, then how do I bring the gay world to my world and say that we can take up this
space. Yeah, I looked at it that way, sort of like what can you be inspired by one part of the
community and bring it to another part of your community and build something new.

I think that involvement I had in the punk rock community was a lot around all ages shows and
making sure that—not making sure, but being really involved in organizing youth-oriented
events that were all ages shows. Not a lot of punk rockers thought … ‘Oh, well we’ll just play
bar shows.’ So I started this co-op called the Just Quest [?] co-op which put on all ages shows in
Vancouver that were not racist, not sexist, not homophobic. And that was a big part of the music
community of the early 90s. And I think that’s why YouthCO really liked when I started
volunteering and working with them. That was one of the things they were really attracted to,
that I had such involvement in youth activism.

BK: That’s really interesting. I think that a lot of the folks that we’ve talked to, their initial
community connection was with the gay community. And it sounds like that was a bigger
connection for you, that music was really that first community that you found yourself really
immersed in.

KK: Oh yeah, definitely. I was like 14 so that’s what I did. Historically the punk community
actually was very gay. It had lots of … It just, when it got very popular it became very white,
suburban, male, macho kind of stuff. But early punk rock scenes were actually very, ‘We’re
those freaks and geeks and queers’ and everything. There really was an interesting history there,
it just over time, voices kind of got sided. But I think there’s probably a lot of gay community
who came out of the gay community, but they’re like, I don’t really identify with the gay
community. I always say there’s a difference between gay actions and gay identity. And there’s a
lot of people who love gay sex—I’m talking as a cis man—that like to have sex with other guys
and see themselves as being gay but don’t actually identify with what is seen as the gay identity,
of what the gay community is, which might be about what kind of music you wear, what kind of
fashion you wear, and what social circles you are. I don’t think my story is actually unique, I just
think often when people say the word gay, they just assume that means that you’re a part of the
gay community, as opposed to … you sort of come at it sideways. You’re a part of the gay
culture but not necessarily always a part of the gay community. We all have different
communities. We’re not all one community, we’re all multifaceted community members.

BK: Of course. Yeah, and it’s partially about where we draw the boundaries of those
communities. If the gay community is just this little bubble in the West End, then a lot of us
aren’t part of that community, right?

KK: I remember early on in the, I was very research-minded … Anyways, when I was
questioning my identity there was this book, what was the book I read. I think it was called “I
Thought People Like That Killed Themselves,” and it was this history of different people who
were gay throughout history that, their stories have gone untold. And the quote was from, I don’t
know, one of the kings who found out that his jester was gay. But the point of the matter was,
there was some interviews in there, and there was one guy in there I totally identified with who
thought, oh I’m going to come out to this gay community, and everyone else is going to be
understanding all the different oppressions of the world. Just like I see racism and sexism and



classism and homophobia all together intertwined. And then I got to this gay-- GAB youth
services and found out that a lot of the kids there wanted to have all their same privileges and
issues, and they didn’t want to look at them, they just wanted to be gay and do that. And I was
like, ‘Oh, I have a much larger political agenda than this.’ So, that’s just where people are
sometimes. [pause] I’m glad I found the AIDS community.

BK: Yes, because that was a very politically focused community especially back in this earlier
period of the epidemic.

KK: Yeah. I mean, I wasn’t positive until, what was it, 95? But, ACT UP was already existing
and there was a lot of activism around, you know, whether it be trying to do more research for
clinical trials or trying to get more access to medication. And it was fun and really interesting.
So, people that were involved in HIV/AIDS activism, it wasn’t just a desk job. It was, like,
‘What are we going to do to shake the foundations of this world who is absolutely ignoring us
and we’re dying. So what are we going to do?’ That was cool. I mean, cool not that people were
dying, but cool that people were taking that action.

BK: Yeah. And it sounds like ACT UP was very much an organization that was very much
focused on these intersectional levels of oppression and that would have jived with your politics.

KK: Yeah.

BK: So, do you remember when you first heard about HIV?

KK: Oh yeah, I was like a young kid. I was probably 11 or 12 or something like that. It was kind
of through the media. You knew it was some kind of gay disease, it had come out as being as
such. And then, of course, when I was really young, people kind of – it was a derogatory joke
that gay people were dying. That homophobia was just so pervasive, myself included. I mean, I
didn’t think I was gay when I was a kid. There was just this whole … I wasn’t so politically
aware as a young child [laughs]. I was just as much of a jerk as anyone else could be. And I
could totally remember, ironically, being at the pharmacy with one of my sisters and my dad, and
there used to be a diet pill called AYDS, A – Y – D – S, and I remember going, ‘Oh, I’ve got
AIDS!’ Like making a joke. And my sister was like, ‘What is AIDS?’ to my dad, or something
like that, and I remember me being snarky and saying something like, ‘Oh that’s just a disease
that gay people get and die.’ I remember that, totally. And like 12 years later, it hits harder home.
But over time, it became very aware that this was preventable.

God, I even did AIDS Vancouver taught a course at – I was part of this thing called Youth Core.
It was a job creation program to environmentally work and built paths in some of the parks in
Vancouver. And part of it was we had to get education, stuff like that, and AIDS Vancouver did
a workshop on HIV and stuff. Never had it in high school, that’s for sure. I don’t remember
anything about that. But, you know, when Rock Hudson found out that he had HIV, and later on,
Freddie Mercury, and Easy E, like oh my god! Things like that really hit people at home. And
then it was like, ‘Why aren’t we doing anything about it!’ And by that point I was getting
bouldered. I remember I was watching the Oscars, and everyone had these little ribbons, and I
was like ‘Everyone is wearing these red ribbons but no one is even saying the word AIDS!’ No



one would risk saying the word AIDS, and I was so upset that people were silently—that was
their protest, was wearing a ribbon on stage. And that seemed like a monumental moment. Yet I
was like, ‘That’s not enough!’ I was just like, ‘That’s crazy!’ That was probably like late 80s. It
wasn’t like the dialogue was when I was young and I was 12, it was new and we didn’t know
much. This was years later and there was still no movement. It was so ridiculous. As a person
who didn’t identify with the gay community, and still hadn’t figured out his sexuality, even I
could see how ridiculous it was. It was just homophobia. This is just homophobia, classphobia
against drug addicts and people of colour as well. Like, these are the people we don’t care about.
The Reaganomics, the Reagan era, was such a parallel to what we see going on right now, where
you just see absolute bigotry, unrestrained, and it seems like it doesn’t get a mark on these
people for saying those things. Punk rock music did very well because there was so much to rally
against in the 80s, because of all this shit. And the punk rock community was very aware of these
politics. And again, I may not have been out, but I was quite aware.

BK: And most of that awareness was, as you said, coming through the mainstream media at the
time?

KK: The punk rock community had a lot of awareness about politics. So I read a lot in
alternative punk magazines about some of the issues going on. And questioning that. But the
mainstream, you could just see how hypocritical it was.

BK: And you said that in terms of sex education in school, that was just not part of the equation
for HIV?

KK: I do not even know. Like I never saw any HIV education in my youth, no. That didn’t exist.
There was talk maybe when I was, when they do the sex education course in probably
elementary school, Grade 7 or something like that. I would have been 12 years old, so that was
’83. Nothing about HIV was really known then to be able to bring that up, and there wasn’t that
many follow up sex ed classes. I don’t think there ever was in my school. I’m just trying to think.
I don’t think I learned anything about HIV until I graduated.

BK: And then in terms of, was there information out there about safe sex for example?

KK: Again, the sex education I would have got when I was a kid was just about really
preliminary, like this is how a guy and a girl can have a baby. And I don’t even know if it
touched on birth control. It was really preliminary. It definitely did not talk about STIs. I mean
HIV wasn’t even on the table then in the early 80s for them to talk about, they didn’t know what
that was. But yeah, there was no such thing as sex ed when I grew up. By that time, I moved
around a lot, I grew up in North Delta, and I didn’t have any sex education that talked about
STIS, or actual mentioning things besides abstinence and how to not get someone pregnant. It
was definitely very puritanical or Christian-based. Don’t talk about sex otherwise you’re
promoting sex, that type of thing. So yeah, you got education from your friends.

BK: And how about into the late 80s and 90s? Was there more information available to you, not
necessarily through school but elsewhere at the time?




KK: I mean, I knew YouthCO was doing some stuff, and that’s why I got involved with them.
And then we basically would do shows, like punk rock shows where there would be tables with
information from YouthCO and stuff like that. But other than making that space available … the
band I was in was called Sparkmarker and we did a lot of all ages shows. We did a benefit show
for BC PWA, and it didn’t raise money, because they were trying to run it like a big gay gala and
they didn’t understand that punk rock kids didn’t want to pay $30 at the door to see an event,
they wanted to pay like 6 bucks. So they lost money. But that was the first time—I can’t
remember his name—one of the guys from BC PWA was like, ‘Oh its cool that you’re doing
that! Have you ever met someone whose living with HIV?’ And I was like, ‘No, actually, I just
thought I’d do this.’ And then he’s like, ‘Well you know, I am!’ And I remember being like
‘Woah, this is the first person I’ve met with HIV.’

Having said that, interestingly enough, in time, going on later, one of my best friends wrote
music for an AIDS song in Vancouver. This is like late 80s. And I don’t know how he got
involved, but it was in the paper or something. So I was like, ‘Dude what was this?’ And it was
so interesting because he was so secretive about it, and I was putting out a record for his band,
because I had a record label when I was in high school. And he didn’t—he was so vague about it.
I couldn’t figure it out. Years later, of course, being a member of YouthCO and being positive,
there was this girl named [name], and [name] was the sister of my friend [other name]. And so, I
then realized that he knew that she was positive back in the day, and was trying to maintain her
anonymity. And so he didn’t tell me about it and here it comes full circle, where we actually
hired her brother to teach at one of our YouthCO Christmas events. And I’m talking to [friend’s
name] like, you know, what a weird irony that that happened back in the day. Well not back in
the day, it wasn’t that long ago to tell you the truth. Probably 6 or 7 years earlier. And our lives
come full circle in this really weird way.

But people were still not wanting to disclose people’s HIV status because there was so much
discrimination and fear. Death marketing around HIV and AIDS got everyone scared and so
there was a lot of misinformation around being around someone who was HIV positive. Even
though I was, let’s say, cool with that, when I met that guy from BC PWA, I was like ‘Woah,
I’ve never met someone.’ I mean the only time I’d seen that was people on TV. Or Princess
Diana holding a [inaudible] with HIV, and you’re like, that was risk taking because there was so
much unknown in the beginning. And even though we got more information going on, you still
carried that fear of the unknown with you. Because it was just so scary in the mid 80s. No one
knew what it was. No one knew how you got it and all you knew was you died. It was just so
bizarre; I can’t quite explain how in the dark we were. Even when information came out, how
hard it was to get the information out because there were so many roadblocks about talking about
sex or talking about drugs. You just couldn’t talk about those subjects, so how can we talk about
it.

BK: And of course, even when information does start getting out it doesn’t necessarily eliminate
all of the fear, like you said.

KK: I think, yeah, once you’ve already learned the message of fear, what I call death
marketing—marketing death to people and giving them fear—even though they get information,
they’re still at their core having to erase that message that’s in their brain that they first received,



which was fear-based. And fear-based marketing is just so strong, it’s really hard to record over
it. Because even though people know it’s not right, it’s still—instinctually, they’re afraid. And it
takes a while for people to change.

BK: So how did you first start getting involved with YouthCO?

KK: They did some show, I can’t remember which one it was, and they did an outreach table
and they had like a free snowboard or something like that that they were giving out at their table
to get people to come to their table to get information. And, like I said, I was in a band and so
very politically active and I was, by that time … It was a very small window of me coming out
publicly as being gay, I was like 23, and by the time I’m 24 I have HIV. So things changed in a
really small window. I was very quickly out of the closet and then back into an HIV closet. And I
say back into an HIV closet because you legally couldn’t cross the border as a person with HIV
up until 2008. So I was a very vocal advocate for being a gay man in my music community, and
that was shocking for a lot of people because bands just didn’t do that. People in bands didn’t do
that in the 90s. And to come out about being positive, while I really liked the idea of it, I spent
most of my time when I was in the band, we were touring the States all the time. So the idea of
me having anything on record saying I was living with HIV that could be used against me to
cross the border? I was like ‘No, absolutely not’ that just cannot … I could talk about it with my
friends, people knew, but I wouldn’t be public about that. I mean, I did some public stuff to tell
you the truth. Photos are out there. But you wouldn’t see my name saying I’m living with HIV,
that type of thing. I was very cautious. I felt like I had to be.

When I moved to Los Angeles—I didn’t move to Los Angeles until 2007, and I was like fuck,
I’m going to be working done there, how is this going to happen for me to get a work visa and
them not to find out. I was paranoid the while time until I got my work visa, and I was happy that
they didn’t do a blood test. But then I was looking at being a citizen in the states and that change
didn’t happen until 2008/2009. And I’d already decided to leave in 2009, but I was already
looking up lawyers about how to become a permanent resident in the States. And there was no
way to do it without paying somebody else to do my blood work. And I was like, ‘I’m just not
that type of person, man.’ I can only lie so much. I really like being who I am and not having to
watch what I say because I don’t want to be duplicit, it just takes energy. And I was just like,
‘Wow I have to fake marry a girl and then I have to have someone fake doing my blood work.
And pay somebody.’ I was like ‘That’s fucked up.’ I just came from a country where it’s okay
for me to be positive and its okay for me to be gay and married to someone at the same time.
And living in the States was like travelling back in time. I didn’t like it

But anyways, your question. Sorry, I just went off on a tangent. I do this very well, I talk a lot.
Your question was YouthCO, like how did I find out about YouthCO. So they were doing an
event at an all-ages show and I started talking to them. And at that time YouthCO, I don’t even
know if they had a staff member, Chris Buchner was the first staff member, the first Chris
Buchner they hired, and in the beginning, it was just run by volunteers. It was absolutely just all
volunteer run and all the board members were volunteers who were doing the workshops. Then
when they got funding to hire people and Christopher Buchner and Josephine were hired, I think
in September of ‘95 they got their funding. And that’s actually when I found out I was positive.
And by December, Christopher decided he didn’t want to do it actually, so he worked for like 3



months and they were just getting started and he was like, ‘Yeah, actually, I don’t want to do
this.’ And so I was like, ‘You’re hiring? I’m going to apply for this job.’ It was a part time job.
And boom! I had to get interviewed by every single member of the board. It was hilarious; I
walked into the room, had no idea, and every single member of their board was there, and each
single person had an interview question. I mean, they were completely non-hierarchical at that
point. I know YouthCO’s changed, but at that point is was completely non-hierarchical,
completely peer-driven, youth-driven. I loved their politics, 100%, I thrived in it. But it was
funny to walk into an interview and realize there was a room of people and every single one of
them was asking me a question, taking turns. So that started that part of the journey for me. And
Chris Buckner was ED, Josephine Stebbings was the other peer outreach worker, that’s what I
was in the beginning, a peer outreach worker. And then (name) was our education person, and
then Ian, what’s Ian’s last name … Gardner, was … Ian Gardner was our education person,
Todd was our volunteer coordinator. Got to remember the original … that was the original group
there. So that was very interesting. We worked with the board very closely because they were
basically training the staff, and so we had a really close relationship. And we know the family
members of YouthCO because they were youth, so that was like Leighton Schneller, Bray Eeegs
and Patrick Macintyre. Those are the ones who thought of the idea of YouthCO. They trained us
for some of the stuff we needed to do, with other board members. So that was when we were on
Hastings St., and then they began to move and we moved to Pender St. But that was really – we
did everything together, it was a really interesting time. It was really focused that of course all
the youth who had been hired wouldn’t have experience working at a non-profit because we
were all youth, so we were all getting trained as much as we could get trained by other youth or
any other workshops. And then the dynamic changed, for all of a sudden, the staff had more
knowledge than the board and then that changed the dynamics of how the organization ran,
because the board felt they weren’t needed. It was a really weird shift, because they were really
needed because we had the staff and they were needed to train the staff, and then within a couple
years the staff were the experts, and the board were doing more policy stuff, and they were kind
of bored. There was this shift in the board that …

BK: I mean, that sounds like they successfully kick started an organization. Like, they trained
people to such an extent that they had more expertise than they did.

KK: Yeah, they did a great job. And for myself, I was just such a … what do you call it … a
working-class guy. I worked in factories and warehouses and stuff like that. So for me that really
jumpstarted me to be able to work in an office space and to be advocating for youth. And I loved
it because we had very strict parameters of what the policies were of the organization. It was
like, if a member of our group didn’t feel inspired by a project that someone proposed to us—
because everyone would be like, ‘Oh we want to get youth on board!’ and it would be like, ‘Does
anyone in this room want to do this project?’ And if someone did, then we would do it. But if no
one was interested in a project, we would just say, ‘Wow that’s really nice. Thanks for the offer,
but we are a youth-driven organization and that idea is not youth driven, that’s an idea that came
from an adult. And it’s maybe a good idea, but for us where we are at, we’re growing at the pace
we need to grow at, and sadly we’re going to say no.’ Because, God, everybody wanted youth to
do everything and wanted the youth voice everywhere so they could say they were representing
youth. And it was like, well, we want to make sure we’re taking care of our youth and we’re not
just overexploiting our youth unnecessarily. It had to be driven by that. I, again, flourished well



in that environment. I mean, we’re non-hierarchical so we all got paid the same, and there was no
one that was higher or more better than any other person. And that became a challenge for
people, I think, over time. And later on, these people came into the organization who didn’t like
that idea that an executive director should get paid the same as an average worker, something
like that. I don’t know. I guess I’m quite the socialist and I do well in that. And I love
consensus–it was consensus-based decision making, everything was consensus-based. So if we
can get consensus, we can do it. For a lot of people, that was a very frustrating organization to
work with. I loved it.

BK: And what did your role look like there, in terms of the work that you were doing?

KK: It was building a youth organization for youth living with HIV, because none of that
existed. So in the beginning, it was just like, ‘We know of some people who are living with HIV
that we’re friends with,’ because some of the people volunteering there were youth, but it was
like, ‘How do we reach the other youth who aren’t here?’ And they’re not going anywhere else
and they may not know that we exist. So my background through the punk rock world was doing
graphic design and putting out records and putting out posters and putting out shows and
promoting things and marketing things. So what I brought to the table, I guess, was marketing
our group. And the Georgia Straight at that time was a very free newspaper; it was thick and
everyone read it. And so we would advertise in the Georgia Straight, because that was a real
general free magazine that went everywhere throughout the city. And then we would also
advertise in Xtra! West. And then if there were youth groups that had some kind of publication,
sometimes, or a pamphlet, something that they would do, we would try to … we had a budget to
… so if Urban Native Youth was doing some sort of brochure thing and we would say, ‘Oh, can
we do a page in that to promote our thing?’ Or we would also do outreach at their events, so that
people … if youth were coming there, let’s say, that was on Hastings and Main area at the time,
like Josephine would be there and just be involved in their activities. But if one of the workers
there said, ‘Oh, I know this person is positive,’ then they’d refer them to you, and they can have
a confidential conversation somewhere else. And if that’s all they did, that’s all they did, but if
they want to, they can come to our organization, which was kind of in the middle of the
Downtown Eastside and West End. We were at like Hastings and Richards area. And then, so
what we were doing was just creating a little database where we had everyone’s name, and if we
had a phone number for them, we had a phone number for them. Not many people had emails
back then, it was pretty much phones. And then as we would have an event -- we would basically
have a once a month dinner, I think it was on a Thursday or something like that, and then we
would try to do a day time movie watching thing, I think on Fridays, and then we’d have retreats.
Retreats were the big one; once a year we had a retreat. And so, with that database that we
collected we would – If we had a phone number, then I would phone them once a week and say,
‘Hey, how’s it going?’ In the beginning there was like 20; by the end when I left we had about
120 youth that were on that database. So it took a while to find everybody, but it was very
personal and it was like, ‘Hey these events are going on!’ And even if they didn’t come, it didn’t
matter, we were just checking in with them. At least once a month, ideally once a week, if there
was stuff going on and depending on how busy we were with other things. And selling the retreat
and I ended up telephone soliciting. You’re just like, ‘Hey we have this great event! It’s free,
you’re going to go away for three days, and it’s all expenses paid. You’d be able to stay there,
you’d be with the youth … it was selling youth this opportunity to go away.




It was very specifically, like, we had a woman and a guy working as the outreach workers so that
we at least had some gender representation. We were just very conscious of … and then we made
a pamphlet that was our first pamphlet for our Positive Youth Outreach Program, which tried to
aim at diversity in the photos so that people who were either comfortable having their faces in it
or it was just their hands or what not. The first brochure, I’m not going to say it was the most
beautiful brochure, but it was just trying to promote diversity of what positive youth looked like.
And so we did as much outreach … we had our dinner events, I mean we would have guys and
girls, straight and gay, from the street or privileged, all coming to our dinners. We wouldn’t have
more than 12 people. At the end we had 120 people in that database by the time I’d been there
for 5 years. But you wouldn’t get more than 12 people at an event. I’d say 8 would be our
average, and if you were lucky maybe 14 or something like that. But it was a very mixed group.
And looking back at it, it was a place for people to meet their partners. Whether you’re gay or
straight, or male or female, you’re just looking for somebody you can date. So it ended up being
a place where youth can meet other youth who are living with HIV and start relationships, and
you kind of keep hanging out. We used to joke that we were creating a dating site was all we
were doing. But having food was what we needed to do to bring people together.

We’d have retreats which would really bring people together. The retreats we did at the
beginning were out in the interior at … there was a First Nations circle, it was like a First
Nations healing retreat is what I would call it. I’m forgetting the name, they only lasted for a
couple of years. So we did that for a couple years, and we had elders teach us interior First
Nations way of healing, and they were also open to having HIV positive youth come out there.
And then we did a couple on the Sunshine Coast, where we were able to find a space and still
maintain a connection with a sweat lodge on the Sunshine Coast. So we were always able to
maintain being able to be aware of our First Nations youth and our ability to see if we could
foster that knowledge and creating that space. So that was really unique. We lucked out with
that. Even finding that first healing retreat space, it was by Falkland. Now I think it’s a retreat
center; I think it got sold by the same people that run it. I’ve driven by there and I know that
that’s what it is now. I don’t know whose involved it in. But yeah, I was a punk rock kid, I was
used to like getting a van load of kids and travelling across North America and sleeping on
people’s floors and going to New York City. So getting a bunch of kids in a van and going to the
interior for a healing retreat? Sure, we had a lot of different needs of people that were at different
places in their lives. But overall, we would always stand back and say everyone was taking care
of everybody. It wasn’t just like the gay guys were here and the street people, you know, divided
into two groups. The folks in the Downtown Eastside, and the gay guys in the West End; it
wasn’t like they were two separate groups. Everyone really tried, and had a really big heart for
helping each other out.

And at the time, too, drugs hadn’t been available like they are today. It was a crazy transition.
We started and, I mean, I have clients who—when I say clients, I mean members of YouthCO
and their positive youth outreach program—who they were gone. Like their families had written
everything, signed off, and then these new protease inhibitors came out and they came back to
life. It was insane. Not that that happened with everybody, but that happened. And it was like,
‘Holy fuck man!’ It was bizarre. And people still died and overdosed and everything else. I’m
just saying it was a really interesting mix.




I was a part of a lot of different studies, because when I seroconverted, I actually wasn’t HIV
positive I was actually HIV negative. And I was seroconverting and my doctors figured that out.
So I became like a lab … you know, ‘We have this one kid who is in the window of conversion,’
and so we’re going to basically put me through every test that they possibly could. I was jumped
onto every study really quickly. So I was one of the first people of that YouthCO crowd that
started taking protease inhibitors. Because people were like, ‘What are these things?’ And I was
like, ‘I’m in a study for it,’ because I was like, ‘Wow, If I’m going to die anyways, I might as
well do something for science. So I’ll try these drugs.’ And I dealt with them fine. So a lot of
people were like, ‘They’re okay, Kim?’ And I was like, ‘Yeah, I’ve been taking them for 4
months now and my numbers dropped and I feel fine. There’s no side effects.’ Because I’d done
AZT and I hated them. I was like, ‘I’ll never do those.’ I was like, ‘Fuck any of those drugs.’ I
did them for two weeks and was like no way. I was one of the … what do you call it … when the
big AIDS conference of I think it was ‘95 or ‘96 came out, and they were presenting in
Vancouver all the work about protease inhibitors, I was one of the people that was in one of
those studies that was like, ‘Look at the great results we’re getting!’

So it was a really weird changing time. I went from being on waiting lists when I found out I was
positive or found out that we did the p24 antigen test, my doctor did it because my white blood
cells were so low. My test came back negative, and my doctor was like, ‘Well I did the p24
antigen test because I’m concerned you had risky sex and your white blood cells are low.’ And
so I said, ‘Yeah, okay, great, I did that. What are the results of that?’ He’s like, ‘I can phone and
find out.’ And so I phone and they say it’s reactive. And I was like, ‘Reactive, so that’s
definitive?’ And they’re like, ‘Yes.’ And I’m like, ‘So what’s this p24 antigen test?’ Because I
knew they had HIV antibody tests. And he’s like, ‘You have HIV. Your body hasn’t created the
antibodies yet. You’re seroconverting as we speak.’ And I was floored of course. But then I was
flown into all these tests and what not. And I was in waiting rooms with people who were at
deaths door. So when I had to do my blood work at the IDC Centre in St Paul’s, which was in the
basement at the time, I remember just being in shock. Because I sat there right away and was
like, ‘Yeah I’m 24 and I just found out that I have HIV, ‘and I’m just in shock. And the nurse
just broke down and left. She just started crying and another nurse had to come and do my
bloodwork because … I wasn’t even that emotional, I was just in shock, because it was a death
sentence. It was like … I told you, I wasn’t working at YouthCO at the time. It wasn’t until 3
months later I was working at YouthCO. My job at the time, they were like ‘We’ve got to put
you on long-term disability. We’ve got to get this for you.’ I worked at this workers’ co-op
which was this very socialist, hippy-dippy, gay-friendly place. It was called Horizons
Distributors. It’s a big company now, but it used to be co-op. And they were as helpful as they
can be, because they lost a lot of their friends, and they were like, ‘Holy shit, this kid’s positive.
Wow, well what can we do for him?’ And then quickly for me it just turned into, alright I’m
going to work for YouthCO, and that’s too bad, and see what we can do to change the world.
That kind of shifted. But yeah, going to appointments and being young and 24, and my health
was still fine because I was just seroconverting, but being in a room with 10 or 12 other people
who were really really frail and really really sick. Because they wanted to get my tests started off
so I have a baseline for everything from checking my eyes to my lungs, you name and it and we
did it. I’m not pissed off about it, I was just saying it was scary. That’s all.




BK: Because seeing people that were farther along in the virus’ progression was like a glimpse
into the future.

KK: Yeah. This is where I’m heading. It was just like, ‘What? Holy, this is where I’m going to
be. And then actually the first thing I did after [inaudible] was I went to the Pacific AIDS
Resource Centre and I went into the library. I was a very knowledge, information kind of guy,
want knowledge. I was like ‘Alright, I just found out I’m HIV. I want to know what drugs are
available to me and I want to know what the typical life—what the typical longevity someone
could expect living with HIV with the current state of things, what kind of a lifespan could I
expect for my outlook.’ And at the time, for the research that I could find out, there was a few
people who did … they didn’t know why but the longest person at that time living with HIV
documented had lived 17 years. And I was like well, I was a vegan vegetarian real health nut and
I was like well if I’m good at this, maybe 15 years. Because 17 was obviously doing pretty well,
but who knows what’s going on with that guy genetically. So I’m just going to optimistically say
15 years. And I just held on to that 15 years, I’ve got 15 years to do everything I want to do. So
that’s how I dealt with that trauma. I just needed a timeline and I held on to it. It didn’t work out
so well when I hit 15 years later, actually, I had a meltdown and a bit of a personal breakdown,
because I was wrong and I kept living, and didn’t know how to live my life past 15 years. But
that’s another story.

BK: And where did you find support initially when you found out about your HIV status?

KK: I just jumped into YouthCO [laughing]. Coincidentally I found out I was positive in
September and I think it was October there was the BC HIV conference, or something like that.
Not the world international conference but the BC conference. And so, like I said, that would be
’95, and I went to that. I wanted information, I was just like I need information I need to absorb
as much information as I … I just started dating this guy and he was very supportive. And I was
like, ‘I need to get as much information as I can if I’m going to survive this,’ that was it. And I’m
not saying that that was the best way of doing it. I just jumped in with both feet and was like,
‘Alright, what can we do to change this and make this better?’ YouthCO had a dinner in
November, I think, because I went to that conference and someone was like, ‘Oh yeah, we now
have this positive youth group, you should come to our dinner.’ So I went to that second dinner
that the Positive Youth Outreach Program ran, and then from that meeting found out that
Christopher quit afterwards, and then I applied for the job. So they had two dinners and then I
would help conduct the third dinner. So from September 25th, which is when I found out I was
positive, by the time January 15th showed up, it was January of the next year I was working at
YouthCO.

BK: That’s crazy. Wow

KK: Yeah. I think that’s very common. A lot of people that were hired that worked at YouthCO
were just like, ‘Alright, let’s do it, let’s change the world, man. I want to make the world a better
place.’ Either prevent other people from getting positive or how can we have empowering… I
just didn’t like the stigma, I hated that aspect of it. Other people were like I need to prevent
everyone else from becoming positive and they wanted to go to schools and teach everybody. I
wasn’t so big on that. I really felt it was very ... I get it, why the message is powerful from



someone living with HIV to do a workshop like that, but I also felt it was very exploitative of
youth living with HIV. And we as a non-hierarchical organization, we all had the same amount
of support systems, and that was why people who were positive who were doing this workshop
deserve more support than someone who is negative doing that workshop. Because when we
leave that table, we’re vulnerable because we’ve shared something very personal to a room of at
least 30 people. When we walk out, we don’t have control over whether or not they’re going to
maintain our confidentiality or not. And that just is not cool with me.

While I started off at YouthCO as a peer outreach worker, I left after a couple years because my
bang was going on tour, and we were going to Europe and stuff like that. So I quit the job, and
then when I came back they had hired somebody else. And then they got more funding and I
started working at AIDS Vancouver for a while with Phillip Banks. And they got that new
funding, the guy that replaced me quit, and I was like, ‘Okay, yeah, I’ll apply for that.’ And the
new job was full time and it was being a program coordinator and I was like, ‘Oh yeah, that’s
more what – I’m burnt out being a counsellor for youth, but I can do the organizational stuff.’ So
the last two and a half years of me working at YouthCO was me being the program coordinator
and then I had two other youth that were the outreach workers. That was our team. I enjoyed
being more of that keeping home base and making sure that that was held the fort. Because as
expected, as I just said, both of my coworkers ended up going on stress leave because they were
burnt out. We were the only youth in the whole fucking city who were identified as being
positive who were going out to places, outing ourselves as being positive, to meet other youth.
Which is powerful, but is also very vulnerable, and they burnt out. And so for months I was the
only person working in that program, maintaining our dinners and our in-house activities because
the outreach work was just too much to be out all the time, I think, and exposing yourself and
being by yourself going to other organizations. It was still … it held ongoing stress. That’s just
my critique, that’s how I looked at it.

BK: And, of course, the stigma at the time would have been pervasive, and that would have
magnified that stress immensely, presumably.

KK: Oh yeah. I mean everyone wanted that story, because it had a bit of a punch to it. Like we
were always being asked, ‘Do you have a positive youth that will go on TV and talk about their
experience?’ God, everyone wanted that, and our whole thing was like, ‘How do we create a safe
space for our youth and not exploit them? If somebody wants to do that, we will let them know,
but we will not exploit them in any way.’ Having to say no was a big part of the job.

BK: So how did YouthCO change or develop over those years that you were there? It sounds
like they grew a lot, for one thing.

KK: I mean it grew immensely when we got that funding, that’s for sure. And then even more
funding for the youth program was seen as a success, and so hence we were able to go from 2
outreach workers to 2 outreach workers and a full-time program manager. So that was great. We
did a lot of advocacy work too. So again, I was a graphic designer, so I brought in, we had a
graphic design team, but I brought in aspects of advertising. We would put out in different
papers; we would also do a little newsletter type of thing to keep people up to date on what’s
going on. We did, I actually found these things, we did these zines. So in the punk rock world,



we do zines all the time so we did like, anonymous or not, but our members would write stuff
and come up with photos or promote… This was Bloodlines, was a documentary of positive
youth in Portland, so we would screen that film. People would write things, we would photocopy
them. And this was at, oh, our retreat in 2000. People would make mock-up funny
advertisements from magazines that were promoting some of our drugs, and we’d be critical of
them and say, ‘Oh my god, that’s crazy’ or ‘dream hospice Barbie’. It was just silly irreverent
stuff. And then you know we did this one as well, that’s number two. So we did things to let
people document themselves and have something documenting themselves that they were a part
of. So things that were empowering, like we did workshops sometimes, whatever their interests
were. We had support groups as well. We would do a talking circle, that would happen. We
would have the dinners; the dinners were separate, they were just food and socializing. The
workshops would have a focus. We would bring a professional in to talk about a subject people
were interested in and then we would have a discussion or question and answer period. Or we
would do the zines, or we would do the retreats. We also had a big billboard that we did at Virgin
Records, which is where Victoria’s Secret is now. It used to be a Virgin Records, huge, and
that’s how big records were back then. We had a big display that we painted together and put up
and had a campaign saying ‘Am I HIV positive?’ on t-shirts to bring up the question for
advocacy and what not. So we still tried to make some of that activism and raising the voice in
advocacy. That was good.

As we grew what happened was all the staff started becoming 30, and we all became very
conscious that we were getting to be 30 and we needed to move on. And most of us, not all of us,
but some of us, we were there because that’s what was affecting our lives, but that wasn’t
necessarily our dreams. It wasn’t like, ‘When I grow up, I want to be HIV positive and work at a
youth organization around HIV/AIDS. That’s just what happened. And this is my critique: I
don’t know if the trips got carried out well. I don’t know if we mentored well enough for new
people to come in and carry on that same course. Some of those skills, to tell you the truth, aren’t
skills, they’re personality. So you had to remember, except for the first two dinners, I was a
consistent voice and so was Josephine. Josephine was there from day one, from the first dinner.
So we were two stable voices for 5 years in that organization. The people that came to the
organization, they might even have only come 3 or 4 times some of them. Some of them came
way more than that, but I’m saying some of them might have only come 3 or 4 times in that 5
years, but when they came there, they saw the same face. There was personality, there was
community that you built.

So when we aged out and moved on and did other things, and people were living with HIV now
and so they didn’t really need to get support because they weren’t concerned about dying. They
just were like, ‘I will take my pills now and I’m not worried about dying, I’m just going to take
my pills and everything’s going to be okay,’ that type of thing. It was a really big shift from ‘95
to 2000 in those 5 years that I worked there. Not just me aging out, there were just so many other
things changing. We went from incredible need for activism and voices and education and what
not to, ‘I’m exhausted, I now have pills that I can take, and I just want to step back for a while.
I’m going to live a bit longer now.’ And I think some of that changed what people’s needs were,
or maybe the attitudes around it changed. I mean, that was a huge revolution, to all of a sudden
have drugs available. That were working! There were drugs the whole time, and they were
horrible, and they weren’t working and they had crazy side effects. And then we had drugs that



had weird side effects like the protease inhibitors, and then drugs got better. And it was like
wow, like this is really easy, you can take a couple pills a day. And then they were talking about
drug vacations, which wasn’t a good idea, but at the time it was like, ‘Let’s see what that’s like.’
All of a sudden it wasn’t such a big deal. Everyone started taking drug cocktails. Before that, not
everyone would take a drug cocktail. It was like, ‘Why would I want to get sick and take these
pills? They make you feel gross all the time.’ The drugs were horrible. I took AZT for 2 weeks
and I was like, never again, that was horrible.

A lot of things changed, and our executive director left. I left. We had a couple changes in the
education department over the years. So I think its dynamic changed. And then oddly enough, I
don’t think there was that many gay men that were working there. It was kind of fun for a while
there. It was like everyone that worked there seemed to be real political lesbians, which is not a
diss to political lesbians, but the diversity of the organization became a very different aspect.
And I’m not too sure if some of the guys were like, ‘Is this organization for me?’ Because it was
shifting to reflect the staff hiring and who they could hire. They had trouble finding gay men that
wanted to work in the positive youth outreach program. Like completely, they just couldn’t find
people that wanted to do it. They asked me to come back years later. They’re like, ‘You want to
come back?’ and I was like ‘No.’ They just had trouble. They could find gay guys, but finding
gay positive men that wanted to do that job, for some reason, it wasn’t as easy as they thought, I
guess. I don’t know. I don’t know what the dynamic was. It absolutely changed, some things for
better and some things – it’s a completely different ball now. It changed so many times since I
left. I can’t even critique—I can only critique what it was like to leave and what it would have
looked like when I left. I mean, I don’t know, everyone’s trying their best and doing the best they
can. So that’s cool. I’m not a youth anymore, I can’t critique it.

BK: I’m a little bit curious about, you mentioned the diversity of folks from different
backgrounds and walks of life and different moments in their life, and how YouthCO in those
early years navigated that. Because I’m just thinking, like, early ASOs that started off much
earlier in the 80s typically were working with a much less diverse community initially. You
know, mostly with gay men. So, yeah, I’m just curious about any thoughts you have around how
you navigated that.

KK: Part of the portfolio at the time, I don’t know what happened to it after, was diversity. It
was like, ‘How diverse is our organization and what are we doing to maintain diversity? How is
hiring looking at being diverse?’ So that was always our subject, it was like, ‘How un-diverse are
we and how much better diverse could we be? Where can we hire people in positions of power
so that we create—it was non-hierarchical—a sense that everyone could be present and give
them the skills to bring them up there. So we had a lot of, I would say, when I worked there a lot
of male-female equilibrium. A lot of people of colour working in the organization and
volunteering with the organization. I can’t say that we always had as great a representation of
people with street experience. That was a mandate, believe me that was in there, we knew that,
but maintaining that was always a struggle. And I think that was a harder position to fill. And
understandably, people’s life circumstances are a lot more challenging than just volunteering on
a board when you’re trying to figure out where the roof over your head is and where the food on
the table is. So we tried to make sure that we weren’t being too happy about ourselves, but at the
same time, people have to be open to taking on that criticism and sitting in that uncomfortable



position of saying, ‘Wow, we’d like to think we’re diverse but are we? So how can we network
with all these different organizations?’ I mean, we were all about networking and partnering with
the Block AIDS Network, whether that was with doing stuff with Urban Native Youth, or
Healing Our Spirit, or there was a group called ASIA at the time. We were partnering as much as
we could with organizations. So that was critical for us to be looking at diversity, like, ‘If we
can’t reflect it how can we support those who are meeting those needs so we can better
collectively meet those challenges?’ I think there was effort. I’m not one to say whether or not
we succeeded, I’m a white middle class kind of guy. But I think we definitely had that on our
radar. We weren’t blind to it when we looked at our group and said this is too many gay white
men, or something like that. It was ironic later on, 5 years, there were very few gay men and it
was all white lesbians and I was like, this is the funniest turnover, it went from one to another. So
I don’t know how that shift happened or how that goes on but it shifted. It happens.

BK: And what was your experience with the medical system during those earlier years? Like
you talked a little bit about volunteering in different trials, but also just your interactions with
doctors more specifically, or health care providers?

KK: Yeah, I mean, right away I was in the Centre for Excellence because, I told you, I was in
that window of opportunity. So I was thrown into that really quickly. So I just did that. My
doctor was a specialist, Dr. Conway, he worked with Julio Montaner and then they had some
disagreement and left. But in the beginning, it was like Julio and Dr. Conway. And he did lots of
bloodwork with me. Man, I can’t even tell you, they just wanted samples of my blood all the
time, because they wanted to be able to monitor this period of me seroconverting and what not. I
don’t know. I was working part time, I lived downtown, I was able to do all that stuff because I
worked a good job, or I was paid to be HIV positive so that was kind of easy to do. Because that
was my job. If I worked in a different organization where I was in the closet about my status, that
would have been a lot harder to do. I probably have a weird experience with that. It was easy, it
was convenient, and it was very well supported. Working at YouthCO was the first organization
I worked at where I was fully embraced as a person living with HIV, fully embraced as a person
who identified as a sexual minority. And not just supported but nurtured. That was a very
empowering … again as a working-class kid who worked in factories and warehouses, that was a
very empowering process. And so to have to go through this really scary thing around HIV, and
then not only am I going through these tests and doing all this stuff, I’m becoming a very
experienced advocate for folks living with HIV while I’m doing this. Like this is my job. It
normalized it a lot for me.

I mean, it got to a good point where I was good with being vocal and strong about … sometimes
my specialists would have interns from other places around the world who were coming in to
train at the Centre For Excellence to get some of their experience and stuff like that. Sometimes I
would be very vocal about that I didn’t like some of their prejudices or stigmas that they brought
to the table from wherever they came from. God, I remember one doctor who was having to see
me before Dr Conway saw me who started grilling me about my safe sex practices and if I was
having safe sex with everybody. And I was just like, ‘I didn’t come here for you to lecture me
about safe sex, I came here for you to actually give me my test results around how my HIV and
my viral load is doing. And I would really like if you kept your moralization about what my
sexual habits are and whether or not I’m using a condom to yourself right now. Because I don’t



need that, that’s not why I’m here.’ So I was able to be a vocal person that way because I already
had that background in support. Like, this is my job, I get to do this. And then I would just tell
Dr. Conway, like, that person never again. They don’t get to see me, they are … they’re not an
asshole, I’m not mad, I’m not crazy mad, I’m just like, ‘yeah, that’s not cool.’ And that’s their
learning process, right? To have me stand up and say, ‘That’s not your job right now.’ But I
recognized in that journey of having to go through as a patient and an advocate that sometimes
you see a doctor and they’re really homophobic and they might be a professional and they might
be working in HIV and AIDS, but they still have their own fucking issues of discriminating
against you based on their own moral beliefs, or something like that, that they haven’t gotten
over. And so sometimes you have to have a bit of a standoff with the doctor that you’re seeing
and say, ‘I’m going to see another doctor. You’re not the person for me.’ Yeah, you had to be ...
again, I think I was already political so back in that time it just fell in my comfort zone to be able
to speak up around that stuff. But I’m happy that I got to speak, and I learned a lot about the
value of people with lived experience being at the table and having their voices heard. I think
that’s a really really unique thing in the HIV world. I mentioned to you I think maybe briefly in
passing – now living with cancer and kidney disease, I have to sit with some of these
professionals in that world and they are not used to patients being such advocates for their own
health. And I’m shocked sometimes how much I have to advocate for myself because they’re so
used to people just sitting back and just taking what the doctors give them as law. And I’m like,
‘No, this is what I’m comfortable with,’ and they’re shocked. But for me, again since I was 24,
I’m like, ‘No, no, I’m an expert on youth living with HIV so you have to listen to me!’ So that
gave me some confidence.

BK: Yeah, just trying to get a picture of some of the larger context here. How was the
government responding in the mid 90s?

KK: Well it made a slight shift. I mean, in the early mid-90s, there was still lots of advocacy
about making it so that we can have access to drugs and have access to ... Pushing forward for
drugs that were in stage 3 clinical trials and getting people who needed them now to have access
to them now. There were still, like, when you had an AIDS conference there were all these
advocates that would come in and shame the Prime Minister or shame the Health Minister for the
lack of action. Again, that was just kind of expected. It was expected that there would be this
big… A part of YouthCO organizations were, ‘Oh, we do education to theatre too.’ So there was
a lot of creative people who were like, ‘Alright were going do this big protest. It was very fun
and cool that way and it worked. And then there wasn’t anything to get so upset about anymore
because all of a sudden, people had access to drugs and the drugs were working. Before, when
the drugs weren’t working, it was like, ‘No, not enough! Not enough! Not enough! Not enough!
Not enough!’ How lucky we were that there were these advancements in HIV to be able to
manage that. Going back to cancer again, holy fuck, man chemotherapy is horrible! It absolutely
is like all the horribleness of AZT that I only did for 2 weeks, that I had to do for 10 months. And
I was like this is horrible. And cancers been around a lot longer. Wow, how lucky we were with
HIV that we had all these advancements. In the beginning, it was like, ‘Oh you have all these
drugs available? Well that doesn’t really make sense. You just made us 3 drugs, so we had to
take 6 – oh my god, protease inhibitors, in the beginning they were so big they were much better
than AZT, but I’d have to take 18 pills of one drug a day. And they were refrigerated. So 6 in the
morning, 6 in the afternoon, 6 at night. They had to be refrigerated. They’d last about your day,



your pocket or sitting out somewhere. The rest were in bottles, a huge bag of drugs in your
fridge. Then that was only one of three drugs. So then you have the other drugs you needed to
take, so I was taking like 24 pills a day. It was a crazy amount of drugs. Refrigerated the ones I
was taking because it was a soft gel cap, that was the study I was on.

So when my band went on tour and we were going in Europe, I was like, ‘I am not taking all
these drugs. Definitely not across the American border, and two, I’m not going to Europe with
all these drugs. We’re going for two months, I can’t possibly refrigerate this in a small shitty
band. Like punk rocks shows, it’s just not going to happen. But this gives you an idea of how
important it was, in that time frame, that the testing of drugs worked, because it was still so new.
Dr. Conway said to me, he would organize it that any major city I wanted to tour with, I could go
to the hospital and pick up my drugs until I got to the next hospital. So he could organize it for
me to get my drugs in London or Rome or Munich, whatever the big cities were. He could
organize that for me to pick up what I needed to get to the next one. And I was like, ‘I’m going
on tour and the focus is just getting to the next show, and I really do not need to find the hospital
and pick up the drugs. That sounds nice in science, but in the real-world terms of what I’m going
to be doing, I’m not going to have the time to do that. This is a punk rock band not making any
money. I just want to see the world before I die, tour and travel Europe with this band I’m in.
And nothing’s going to stop that.’ I’d rather do that than just be taking my drugs, because that
was my dream. So I’m glad I did it, but I was very honoured to be given that option. Going,
‘Okay wow, this is really important to these researchers that I stay on this pill. They’ll do
anything to make me stay on this trial.’ But, you know, I didn’t. I took some other drugs I ended
up doing well for a while. They were kind of substandard drugs, they worked for a while, so it
was okay.

BK: And you didn’t have any major side effects on any of those early protease inhibitors?

KK: When my boyfriend ate my ass, he said it tasted like a gasoline tank. So yeah, there was
some weird funny side effects like that. And I would burp up a lot of chemicals and stuff like
that. But I didn’t have of side effects like … I mean, I ended up getting some lipodystrophy but it
wasn’t actually from the protease inhibitors, it ended up being from the d4t, I think it was, that I
was taking. They ended up finding out it was a combination of the drugs that started creating
some of that stuff. It wasn’t so pronounced with me at the time. I mean, it was hard to know
because I was also 24, very baby-faced, and by the time I was 30, I was taking all these drugs.
And it was hard to know, is this me just aging and becoming an older person who’s in a mature
body, and losing the baby face? Or are these the side effects of the drugs? You don’t have that
perspective. When you’re an adult you’re just like, ‘This is what I look like. I’ve changed.’ But
when you’re young and your body is still changing, you don’t know if it’s genetically changing
or if it’s changing because of the drugs. So there’s a lot more questions when you’re young and
taking all these drugs, that’s for sure. And for that matter, I’m 49 years old and I found out I was
positive when I was 24. So I’ve spent half my life living with HIV now, and the drugs haven’t
been around long enough for us to know what is it like for somebody to be actually, in real life,
taking these drugs, and what kind of impact does it have on your system? And so we know
people are living longer, but we really don’t know the long-term effects of these drugs on people.
And so, in a way I’m always a guinea pig. My life on HIV is a guinea pig.




BK: You mentioned some aspects of HIV activism. And I guess a lot of the work you were
doing at YouthCO can be conceived as activist in nature in a lot of different ways. But were you
involved explicitly in any kind of HIV activism work beyond what you already alluded to?

KK: There was some really preliminary stuff that happened at the events. We got to hold
placards for Jean Chrétien about acting on making drugs more available. But I think the more fun
activism probably happened before that. And I had this weird role where I just started working at
YouthCO, and then we had the international AIDS conference and this was my opportunity to be
networking with a lot of interesting people, and trying to get an idea of what it is that my job is.
So I felt very overwhelmed to quickly be in a position where I’m supposed to be gleaning all this
information. There was activism happening, again, we did some simple parts. They were easy.
But I never did anything radical, not that I would say. I think I was really trying to fill in my new
shoes and trying to figure out what it is that I’m supposed to be doing as a new hire for a new
organization. What are youth living with HIV supposed to be doing at a conference like this, to
bring back to our youth talking about what came out of that workshop? So I think I was a bit
overwhelmed with all the different … being pulled in a lot of different directions at that time.
And again, after that there really wasn’t much activism because drugs were available. And so all
of a sudden, it didn’t have that edge to it anymore.

BK: Yeah, it makes sense. So we have some questions that we ask closer to the end of
interviews, but William, did you want to jump in and ask anything at this point?

William Flett: Well, I don’t have the interview questions handy, so that’s all on you. But the one
thing that is sticking out, and I’m not sure how useful it would be, but earlier when you were
mentioning zines, did you flash an actual zines back from old YouthCO days?

KK: Yeah, that’s what I have, I have two of them.

WF: Because that seems like it would be useful in some way or another to be on some level of
record.

KK: Oh totally. You’re more than welcome to have me scan those or what not, because that’s
definitely a part of the history.

WF: Yeah, because for all effects and purposes, if I were not to out the history of this project too
much, a lot of this project started basically from a small magazine that then found us ---. There’s
not enough of this existing in record. Also that seems like, I can’t remember what the… Angles,
I think it was called, the magazine was called.

KK: That was the gay magazine at the time before Xtra! West came out.

WF: Yeah, and that reminded me of that. So I think it’d be useful to have some level of
documentation. Although I’m not sure how it would become useful, other than like we’ll --- the
documentation and then think of what to do with it later, which is possibly also questionable on
the ethics standpoint. But I think it would be a waste to have that just be another thing that
disappears.




KK: I don’t know how much you’ve known about—I’ve already had this conversation with
Ben—I’m actually creating an archive of my personal archive at SFU Libraries Special
Collections that’s basically documenting my life as a teenager until now. With all my creative
work in music but also as a queer person and obviously living with HIV. So I’m going to be
donating all my materials to SFU, so it will always be available through SFU as well, under a
stream of my collection of stuff. Whether it be those zines or some of the other old paperwork
I’ve kept. Oddly enough, I have my original drug request for AZT, I have my original HPC [?]
station study patient, the consent form that I had to … I don’t know why I kept all this shit, but I
do. This is my favourite—because at the time you had to prove you were HIV positive to get a
lot of services, I still have a doctor’s note from my doctor (name) it says, ‘Mr. Kinakin is HIV
positive. Please assist him as best as necessary.’ So I can use that when I was going to
organizations to prove that I was living with HIV. So you were talking about activism. This was
one of the postcards, it was like ‘killing times, killing people, AIDS action now.’ And it was a
little postcard and stuff like that. So I have a bunch of these weird little things that I will be
donating. Even the 1994 Positive Living manual and their bylaws and constitution of ‘91. They
created a Living Positive magazine early on, before they changed their name. And there’s a
bunch of photos of myself and other youth, we wanted to make sure youth were represented in it.
So that stuff will all be donated to SFU and you guys will be able to have access to it once it’s
there.

So yeah, I like collecting stuff. I’ve always, as a punk rocker kid, learned that if you don’t
document your own scene, no one else will. Because punk rock music in the 80s was really not
cool, so people weren’t documenting it and preserving it in libraries. Now people want to do that,
but a lot of it got thrown away. If you ever find this magazine, though, this is from San
Francisco. It’s called Diseased Pariah News, and this is the funniest magazine in the world. They
did this whole thing on Barbie on the back covers with KS Ken and AIDS Barbie’s Dream
Hospice. And no one would ever sue them because they were a bunch of people living with HIV.
And they were so scandalous and irreverent, and they were just hilarious. They inspired our zines
because we’re like, ‘this is what we can do.’ It’s like, no one is going to sue a bunch of youth
living with HIV because they’re going look horrible if they do. So we can do whatever we want,
because an organization that’s going to sue a bunch of HIV positive youth for critiquing their
protease inhibitors is going to look like a real asshole in the end. So one of our ads and -- I don’t
know if I have all the zines we created, I know we created at least 2. But there’s one hilarious
one that was like, the drug, it was one of the protease inhibitors, and they had an ad with people
climbing rocks out in, I don’t know, the Grand Canyon or something like that. And there’s a guy
helping another guy out and it’s like, whatever the drug name is, ‘Enjoy the freedom.’ And one
of our members added these little thought bubbles like, ‘Hey Frank, how’s it going?’ And then
the guy below says, ‘I just shit my pants.’ Because it was making a joke that these drugs have
lots of crazy side effects. It wasn’t all freedom, like some of these drugs were keeping people
alive but they had really crazy side effects. The drugs we’re using now are way better. But you
weren’t supposed to critique them because they were giving you them, but we were like, ‘Fuck
it, we can do that. Are they going to sue a bunch of youth living with HIV? I don’t think.’ So
they didn’t [laughing]. So that’s an aside from what we were talking about.




BK: No, I mean, I think it’s such interesting … so many interesting historical pieces there and
the historian in me is so so happy to see that that’s all going into a collection somewhere. It’s so
so valuable.

KK: I’m really happy I reached out to them and they were interested, and to take part in this as
well.

BK: Of course. William, if other questions come up, don’t hesitate to jump in, but I’m going to
just move on to the last couple questions here. So I guess, since ’95, how has your perspective on
HIV changed looking towards the present?

KK: Well, presently, it’s had a huge transition, and that is that obviously being diagnosed with
multiple myeloma, which is a blood cancer. One of the things that I have learnt in my new
journey is that in our speciality aspect of researching and studying health issues, is that we
compartmentalize them and we don’t integrate the research on them. So in my journey with
cancer, which is a blood cancer, and of course I have a blood virus. There’s no research to say
whether or not there’s a correlation between me being positive or my drugs that I take having
any effect on the fact that my cancer has been really—even though it’s not considered an
aggressive strain, it has been aggressively attacking me. So that information we have around
other health issues in HIV just doesn’t exist, because everyone is focused on their specific vision
and viewpoint. Once in a while there’s a crossover and the only research that I’ve been able to
find about the effects of HIV and multiple myeloma is a study that has 3 cases. And the study
says there’s not enough data for us to actually do this, we need more research, because these
three people all progressed really quickly with this cancer, but we don’t know if there is a
correlation between HIV or if there is correlation between the dugs they’re taking or not. You
know, we just don’t know, because people with HIV are excluded from cancer trials and people
with cancer are excluded from HIV trials. And so I’m in this crazy situation where my cancer is
quite progressed and its harshly affecting my kidney, but my kidney only operates at 20%. And
20 years ago, I wouldn’t be able to get a new kidney because I have HIV. I’m allowed to get a
kidney now with HIV, but I’m not allowed to get a kidney now because of this cancer. And so
my progress with this cancer is limited because it’s already taken out my kidney. When I say
taken out, I still have 20% left, but almost taken out my kidney.

And so my biggest focus around HIV now is it’s not just getting old with HIV in the sense of just
what aging looks like, it’s more like, what’s the complications of other health issues and how are
they magnified by HIV and/or the drugs that we’ve been taking for 25 years? That information
no one can give me, because there’s just no data on it. And that frustrates me. I expect that to be
falling mostly on the world of HIV, because HIV has had so many progresses that they have
space to focus on it. Whereas cancer is overwhelmed, their advancements have – I mean, there’s
money in cancer, but they haven’t made as many advancements that are nearly as close to the
advancements we’ve had in HIV. It is so archaic, chemotherapy. I’m not doing it again, that’s
why I’m doing all this stuff because they’re going to recommend it one more time, and I’m
saying no. I’m not going do it because it’s just too horrible. I just don’t see my quality of life
being well. So doing this archive project for SFU or even doing this interview with you guys,
part of this is like, ‘Alright, it’s time to share my voie, because there’s not much time left on my
clock. There could be if we had different insights, but there isn’t. And much the same, there was



at one point with Hepatitis C that people couldn’t get a new liver because they had hepatitis. And
if they had a new liver, maybe they could live longer. It’s getting me the treatments that are
going to make the biggest changes, because the organ transplants aren’t going to be available. So
the new treatments for cancer aren’t enough around the corner to make a change on my life,
because the treatments that they need for my cancer require me to have a good kidney, and my
kidney has to be above 40%, and it’s at like 23%.

I mean, I’m happy. When I was 24, I thought I was going to live 14 years, so I’ve already lived
10 more years than that. On that perspective, I’m grateful, I’m lucky. But having said that, we
still have a lot of work to do around what does HIV look like for people who are living with HIV
and taking these drugs? Now we have a lot of things to prevent people from getting HIV, which
is awesome I’m really happy that people can take PrEP and prevent themselves from HIV. But
we still don’t know what the long-term effects are of a person who is negative taking PrEP for 20
years. Will they, I mean, they’ll probably just stop taking them if they have problems. But when
it comes to HIV, people living with HIV, and having this, it’s not just that, ‘oh I have cancer and
now it’s affecting my kidneys.’ It’s like, I have 3 illnesses and I can only take certain drugs
because each drug interacts with the other drugs for the other issues that I take. And so I am so
precarious in what drugs I can even take to begin with. Because I have such a complex case that I
have to have a cancer specialist, a kidney specialist, and an HIV specialist, and they’re all like,
‘We don’t know, just looks like on paper what we think would be the best.’ But there’s not much
research or evidence for them to go by. We’re just kind of … and if I’m lucky, I’ll get some
more time, but I have to be realistic. It could change really quickly. And if the cancer comes
back, it’s just going to go up to my kidney. It’s not that it’s a kidney cancer, by the way, it’s just
a blood cancer, and it toxified my blood and my kidney can’t keep up with all the toxins in my
blood, so it toxified my kidney. So once the cancer gets back again it’s going to affect my kidney
and or affect my bones.

It’s crazy, the doctors who were looking at the problems with my kidney were like, ‘Oh it’s
probably because of your HIV drugs. We’ll change your HIV drugs.’ And in the 6 months before
I got diagnosed with cancer everyone just went, ‘Oh, it’s your HIV drugs. We just need to figure
out what’s going on with your HIV drugs.’ No one thought to think it could be something
beyond HIV because they were so blinded by the fact that I was living with HIV. This must be
about my HIV drugs. It’s like, wow, what a difference it would have made, possibly, who knows
maybe not, if we had 6 months ago also said, ‘Oh, I don’t fit the age bracket of someone who
would be considered a target for this cancer.’ Normally it would be someone who’s 65. But
who’s to say that because of me taking these HIV drugs that the target needs to be actually lower
for people living with HIV, so that we’re looking for this cancer for people at a younger age.
Because I got lost in the blind spot, everyone’s looking here and looking here but there’s these
two blind spots, and I totally fell through the cracks. And I work in the HIV/AIDS world! It’s
crazy, not only was I working in HIV/AIDS, I knew all the specialists that were HIV specialists
that were being consulted but no one was thinking cancer. And I think that’s what we need to
start doing, is not just thinking cancer but thinking what else can it be besides HIV? Like if
someone’s been living with HIV for this long and that’s going to become the new norm what are
the other health issues we need to be looking at that are going to be compounding their health?
And being able to look at that and be a bit aware of it ahead of time. Because I’m not the only
one, and I won’t be the last one either. So that’s definitely a new insight I have had. Also the fact



that I worked for two HIV/AIDS organizations and neither of them had long term disability plans
for me. So I didn’t even get to go on the long term disability. I had to go and apply for disability
through the Canadian Pension Plan. And when you’re dealing with a cancer diagnosis and
having to go through chemo and jump through those hoops, I really fucking would have loved to
have had my work, as HIV/AIDS organizations, to have had long-term disability so that I didn’t
have to do that. And so that was sort of my two insights or critiques about the HIV/AIDS world.
Having people living with HIV falling through the cracks.

BK: Thank you for sharing that with me. And I guess these are issues that get missed in a lot of
the end of AIDS or end of HIV messaging that we see out there. There’s a lot of issues that still
need addressing, in terms of the long-term survivors especially.

KK: Yeah, and that voice will get a lot smaller as people … not saying that people say this or
that I think this, but there’s a part where you’re like, ‘I’m just happy to be alive. I’m alive longer
than I expected to be. I’m not going to complain.’ No, no we still need to advocate for ourselves
for sure.

BK: Absolutely. And I guess just in terms of any words of wisdom to impart to folks who maybe
didn’t live through this period of the epidemic, do you have any advice for people who might be
newly diagnosed today or younger folks in our communities who just didn’t live through this
time?

KK: Oh, I guess a part of me … I’m just trying to think of how some of the issues that I have
seen, some of the advancements that we had in HIV happened with people who were dying.
They were raising their voice and being activists because these were the last months of life that
they had left. And to, I guess, value that some of the changes that we take for granted now are
because people’s lives were at risk. And they didn’t want to be on the front lines and be
screaming, they had no choice. This is how dire that was and that’s hard to imagine how … I
really can’t think of any other … I mean, I know that there’s talks about discrimination around
the pandemic going on now, but people really didn’t give a shit about gay people and drug users
and people of colour from other countries or from Haiti. It was so not important until it started
affecting other people. And this comment that I’m making isn’t me making this up, this was a
term that was: when innocent victims were being affected by HIV. That was the term that was
used. Innocent victims. And that other people with HIV, by default then, weren’t innocent and
that they deserved it. But it was the innocent victims, the person that wasn’t gay, wasn’t a drug
user, was white middle-class went for a blood transfusion, they were an innocent victim. And
how powerful words are when we forget how we talk about things like that. Whether that be
people saying, ‘Oh, they’re HIV.’ Rather than saying ‘They’re living with HIV.’ And not
identifying with disease so that you are the disease, but that it’s something that you’re living
with. The power of our language and our words is still very—we still hold these words. And,
‘Oh, are they HIV?’ And it’s like, no, no one is the fucking virus, they just have the virus and
they’re living with it. And having humour with it as well.

But with all the advancements that we did have, for me I was always very aware when that
happened that the drug companies, they were happy to have their drugs be pushed through
quicker so that they could have HIV drugs accessible at an earlier time. They didn’t have to wait



an extra 20 years of research before it went public. We advocated to have it now, and the
government said, ‘Okay, let’s make it available.’ And those drug companies, as far as I’m
concerned, are still responsible with all the money they fucking make to be doing the research to
be able to affect why someone like me living with HIV has other health complications. And why
aren’t they footing the bill for that? Because they would have had to foot the bill if we didn’t
actually make it available, that they could jump the queue and make those drugs available for us.
Sure, we got something out of it. People are living longer. But we also lost something out of it,
and that is a responsibility for the drug companies to be able to have more research and maintain
the research once those drugs became public to be able to still study and find out what are the
long term effects of people living with these drugs. Because I’m still a guinea pig and they’re not
responsible for anything. I’m not saying I want to sue them, but I’d like to at least have some
research, that would be nice. I’m not forgetting about that piece

BK: Yeah, I think that the HIV activist movement was at times aligned with pharmaceutical
companies in terms of getting these drugs approved, but also very much—think of ACT UP in
New York, especially, how vocal they were about making treatments affordable and about
ensuring there was access to universal health care in the States. The tension between activists and
pharmaceuticals, it’s been going on for a long time. But yeah, your point about, they should be
doing this research, I agree

KK: Yeah, they got the money. They’re making well but we have to advocate for it, and we have
to push for it and so hopefully we don’t … I know there’s a lot of battles that we need to fight,
and we just got through a huge battle getting Truvada being able to be available for people who
are HIV negative to prevent themselves from getting HIV positive. And I’m really happy about
that, but that doesn’t mean that we forget about the people who are living with HIV. I feel, I
worry now HIV/AIDS organizations are just—its pushing Canada more so than my experience in
the States—are so focused on following where the government funding is going that they follow
the funding around harm reduction. And harm reduction is a part of how we look at education
around HIV and AIDS, but it’s been, I think, re-appropriated to just mean needles and pipes and
around drug use, and it to me is only one part of the education aspect of it. And there’s so much
money obviously with fentanyl going on that AIDS organization are just being focused on harm
reduction aspects, as that’s where all the funding comes from. And we’re forgetting that people
are still living with HIV and aren’t getting the support needs or the research needs. There’s so
many aspects of what people living with HIV still need. There’s education, there’s support,
there’s testing obviously, and there’s advocacy. And we focus so much not just on education and
harm reduction, but harm reduction only of education. That’s still where all the money is being
channelled into, one branch of one of the pillars of how we’re supposed to be approaching HIV.
That we don’t realize the table is so tilted on harm reduction. I love harm reduction! I’m a drug
user! I’ve utilized harm reduction. I have no problem with harm reduction, but it can’t all just be
harm reduction. I really am worried that AIDS service organizations are just following the
funding and not actually looking to see how they can be more better at reaching out to the people
who need those other services around support, around testing, around advocacy that have been
lost, because we’ve just been so focused on harm reduction. And again, not belittling harm
reduction, but not forgetting about the other needs in that journey.




BK: And simultaneously, we’ve also seen organizations that cater more to some of those support
needs disappear in recent months, so I think that just speaks to the necessity of other
organizations existing, organizations filling that gap.

KK: And in Canada, a critique I’ve heard other people say too is we rely so much on
government funding. Well that’s why organizations do fundraising, so that you can do the work
that the government isn’t giving you money for and focus on getting money to do what you need
to do as an organization. Not just the numbers that the government’s always going to focus on,
what’s the crisis of the moment. But we know there’s more needs than just the crisis. We have
multiple crises. So how do we look at other ways of cultivating money? To be able to do the
work that we want to do rather than chasing the funder’s needs. How do we start meeting where
we want our money coming in and where we want it to go? And fundraising is one of those ways
to do it. It’s interesting, because you go to the States and HIV/AIDS organizations are
HIV/AIDS organization, and Hepatitis C organizations are Hepatitis C organizations. They
didn’t have to meld, because our government actually said you have to meld, this is how we will
fund you. YouthCO had to change our mandate if we wanted to maintain getting funding,
because we were changing to meet the funders needs rather than …

I’m not saying that was a mistake, it’s that when we’re doing that, we’re missing out on
opportunities where we could be getting money to do what we want to do, not just following the
lead. I think there’s a bunch of things that got lost in that. And Positive Living, they just shut
down. They focused just on HIV. They didn’t do that. And in the end they folded, and I think
that’s sad. And I don’t think it’s that they did something wrong, I just think there’s something
else wrong with the system and how we fund what is the disease or the health issue of the day.
There is always a disease or health issues of the day. And for a while there, HIV was it and there
was lots of money for it, and then it want away and then it was the next health issue. It goes
through these marketing cycles of – everything’s going to COVID right now, we know that
without a doubt. But what I’m saying is there’s always something like that happening, but it
doesn’t mean the issues go away. People are still living with cancer in COVID. People are still
living with HIV and a plethora of other health issues during COVID. It’s just another thing on
top of what you already have. So how do we maintain that? Not forgetting. When there’s a big
wave of whatever issue there is, how do we not forget about the other waves that still exist
before and after that? Did I talk enough?

BK: This is great. We definitely appreciate people that are verbose and share their experiences,
and that’s what these interviews are really about. I’m kind of out my formal questions. I feel like
there’s probably aspects of your story that we didn’t cover, potentially, so I guess if there’s
anything that you want to add or clarify at this point, please feel free to do so.

KK: I know I’m a very fluid talker so I get off topic a lot, and I don’t expect me to be able to say
everything in one interview. But what we captured here, it’s cool. And I’m sure there’ll be things
I wish I said, but that’s just a part of life and doing an interview. You try to do more.

BK: Yeah and like I said, if there’s things you think of afterwards that are really essential to your
story, we can always find time to chat about those things and document them in a follow up
interview.




KK: Totally

BK: So that’s definitely an option

KK: What was the last bit, sorry?

BK: Oh, that’s definitely just an option

KK: Thank you, this is great. I feel satisfied and I’m excited to be able to participate in your
project. It sounds like perfect timing for me, so glad we could do it

BK: Yeah thank you so much, Kim, we really really appreciate it. William, did you want to add
anything else?

WF: I can’t think of anything else at the moment, no.

BK: Great. Then we’ll just leave it there. I’m going to stop the recording, and again, thanks so
much, Kim.