Interview with Mark Haggerty

18-07-10-MH.docx




“HIV in My Day,” anonymous (July 10, 2018)

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“HIV in My Day” – Interview 36

July 10, 2018
Interviewee: anonymous (P); Interviewer: Ben Klassen (BK)
Interview anonymized at participant’s request

Ben Klassen: Thank you so much for being here and sharing your story with us. We are really
looking forward to hearing it. Can you tell me a little bit about your connection to Vancouver?

Participant: I was born in Scotland and we migrated here in 1968, and pretty well moved right
here.

BK: So, you spent essentially your entire life here.

P: Yes, grew up on the North Shore.

BK: Do you identify as being part of any communities in Vancouver, or like prior to the
epidemic, any groups that you were associated with?

P: What kind of groups?

BK: We often have been interviewing gay men, so we have been asking them about their
associations with the gay community. Were there any communities that you were associated with
like that – not that, but like that?

P: No, I don’t think so.

BK: We just want to get a snapshot of you before we start talking about the epidemic. What did
Vancouver look like in the ‘80s before the epidemic?

P: I guess I would have been in my early twenties – sixteen, eighteen, yeah, so kind of like
turning of age. A party place, there was a lot of fun going on. We had Expo, and just coming into
my age, so I was young, so I started drinking, doing recreational drugs, pretty much like that.

BK: When was the first time you heard about HIV and AIDS?

P: I heard about it in the early ‘80s, like this mysterious illness that had shown up and I just
remember people were panicked, but then it was seen as a gay disease, so there was a lot of… I
didn’t know a lot about it, but from news media, I remember being here and one of the
politicians saying that these people should be put on their own island, like lepers, just some crazy
talk back then. But I didn’t pay too much attention to it ‘cause I wasn’t gay so I didn’t really
think, I wasn’t concerned about it. I just remember there was a lot of fear about it out there.

BK: How were you responding to that news on a personal level?






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P: To be honest, I felt bad for people, but I didn’t know enough about it, and also, I didn’t think
at that time it was going to affect me in any way.

BK: Because, as you said…

P: Yeah, it was promoted as a gay disease. I mean there were some crazy ideas – somebody had
sex with a monkey, there was a lot of stuff, and a lot of fear. But I also remember a lot of people
saying they brought this on their own, there was a lot of, because apparently, I remember
religious people saying this was god’s punishment for them. So, there was a lot of stuff out there,
a lot of hated, but I also realized that behind most hatred is fear.

BK: As the epidemic progressed, did that impression of AIDS being a gay disease start to shift at
all in your view?

P: No, because the only – I remember Liberace dying, Rock Hudson was a big huge one, Freddie
Mercury, again it was more saying it was a gay disease. I didn’t know anybody who was straight
that had it or had affected anyone.

BK: You didn’t have much interaction with the gay community prior to the…

P: No.

BK: So, there weren’t a lot of sources of information even as the ‘80s progressed and into the
‘90s?

P: Expo 86 came, and it seemed so far away, it started in San Francisco, it seemed far away, and
then I remember, obviously I was getting my information from the news, and I remember they
were going to open an AIDS ward at St. Paul’s. What I got my information from was the news
outlets, the paper and the TV.

BK: So, when did HIV start to show up in your own life then?

P: That is the thing, I was doing a lot of recreational drugs. It was starting to progress worse and
I was doing, occasionally, injecting, and not too often though, and it just got worse. I was getting
worse, and then in 1993, I got sick, I got this flu and I lost a lot of weight. I lost like 30 pounds
and it was really weird, and my doctor at the time suggested I have an HIV test. And I thought
sure, not thinking that – it would be impossible that I would have HIV ‘cause at that time they
weren’t talking about people injecting drugs getting HIV. So, he tested me – I think that’s right,
September 18th they test me a couple weeks before and they said you have to come back to the
doctor’s office, which I was a little concerned about, but I was oblivious that this could happen.
And he told me, and I just remember the shock and, “How the fuck is that possible?” “You have
tested for HIV antibodies,” whatever it was, it doesn’t matter what he said, all I heard was AIDS
‘cause at the time I knew. I don’t even think they were talking about HIV, it was just AIDS. I
just remember I was freaking, so I left that office, I had to go and catch my breath. Then the
nurse came out to me and was consoling me and she said, “You are going to be okay,” and I was
just like, and then… But I had no idea how it happened or why or anything else about HIV and





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AIDS – I knew nothing. I only knew what I had heard and what I had heard was you were going
to die, soon. So, I was twenty-eight at the time, twenty-nine.

So, what my GP did, and it was great, he said, “You need to see Dr. Julio Montaner over at St.
Paul’s Hospital,” and I went, “Okay.” So, I went over and did more tests and he sat me down,
and I loved the way he made me feel very welcome, and he explained things. He explained a lot
of things to me that went over my head but he was trying to explain it to me and he goes, “You
know, we have some medications now that you should be starting to take.” And I went, “Yeah, I
guess so. Well how long if I take the medication, how long, well how long do I have if I start
taking the medications?” And he was pretty frank, two years, three years. I will get into those
medication later, but anybody who was diagnosed was dying within a few years. So, like I said, I
was so young, so yeah, I was like… but take these meds, we are still experimenting with these,
and I went, okay. What I did was I couldn’t deal with it and that is when my addiction really took
over. I got into hard drugs and I was trying to take these meds – like, I was taking a dozen meds
a day, some with food, some with not, the side effects were brutal, keep this refrigerated, and you
had to have a routine. I can’t, I can’t – I tried and I would try for a little while and then I would
stop, and I would go back. And obviously the hospital was doing my bloodwork and so I would
go back and he goes, you are – my viral load was in the millions and my CD4 was just nowhere,
wasn’t nowhere but it was pretty low. So, I would try these meds and I wasn’t really up front
about how bad my addiction was being, and I was saying okay, then all of a sudden these
combination of meds I was on, I would grow resistance to, and it was like, well that combination
is done now, you can’t go back to it, it doesn’t work for you anymore, so try this combination.
So, I went, okay.

So, I had about three or four different times I went back and the different combinations, and
basically he was saying we are running out of options. But like starting and stopping is the worst
thing you can do, and in my head, it was something was better than nothing – I didn’t realize the
damage I was doing myself by stopping and going. But the meds were brutal, AZT and these
other things, just brutal – harsh on your stomach, you couldn’t hold your bowels at times, it was
just brutal. So then, I think a couple years in, I said fuck this – again I went on my, I just went on
a run for a while ‘cause I figured if I am going to die I might as well die the way I want to in a
blaze. But then in 1996, and he says let’s try this, we kind of got a new thing going here, this
new cocktail, try that. I tried that, and it was working, it was starting to work for me, but again,
and then I realized my addiction was going to kill me before the HIV piece, that is what he was
telling me. I remember it was 1996 and they had a conference here, and I volunteered there,
‘cause I wanted to get more information and they were so excited about this in 1996. This is
going to change things and I went, okay. But again, my addiction was taking over and I was
fucking up on my meds, so again, he gave me a couple different combinations of these meds and
he said, either don’t use any or get this done. So, I realized the addiction was going to kill me
before HIV and that is when I went into recovery, I went into recovery about the same time. I got
into some 12 step groups, support groups, I saw a counsellor, so I was doing well.

Then I got hooked up with the services of Positive Living BC, but I also remember I couldn’t tell
anybody that I had HIV because the stigma. To be quite frank, this was a gay disease – I am
saying gay, that wasn’t what they were saying, so there was no way I was going to tell anybody
that I had this. So, then I went to Positive Living and they helped a lot because there were





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support groups, there were other people that I could relate to and then, this took years. I mean, I
can’t thank Positive Living enough, ‘cause I was the token straight guy there at that organization
at the time. First of all, it was the BC Persons With AIDS Society – that’s right, fucking AIDS,
right? You want me to go into a building that says AIDS? It was like, fuck, it was hard to do, but
I liked the people inside, and over the years I realized that we have a common connection and it
doesn’t matter if you gay or straight, we deal with HIV and we are long term survivors. And your
sexual orientation is really none of my business, nor yours of mine, but we can relate to what it is
like to experience what it is like to have HIV and the struggles with that. I can relate to the
struggles of people staying on their pills. Some people had no addiction, they just wanted off the
pills ‘cause they were just so harsh, so I was keeping that support and yeah.

But I was still hiding it from most people, and I remember, eventually about four years later in
‘99, about ’98, I told my parents ‘cause I didn’t know how they were going to react and it was, it
went really well. They cried, they were really supportive, I needed that support too. I also
remember lots of people were hiding their diagnosis. At the time we still didn’t know enough. I
remember I was in fear of people using my forks, I would be invited to a friend’s house with kids
and I was so fearful that I got a cut and infect them, it was just like fear. I got support there, and
it has always been a continual. My recovery is also like, I have had years of recovery and I have
had a relapse, and I am constantly aware of it and so my addiction is always there, to me. So,
let’s move forward because in, I remember I was having sex with a girl and she knew I was HIV
positive and we were practising safe sex and the fucking condom broke – what are the chances,
right? But it broke and she freaked out, I freaked out and then she had to be tested for the next
six months and it was just, and you know what? She dropped my company, which I totally
understand, it was totally too stressful, I mean I was sad, but I also respect, but she has to make
that decision for herself. So, I also remember bringing my girlfriends, actually down to see Dr.
Montaner and like having him explain the whole technical side of this shit, what is risky, what
isn’t, right? And at that time, sex was risky cause it could break, but either they would date me or
not and but anyway, by ‘98 things were going well. I was on the new meds, my viral load was, it
was almost undetectable, or pretty close, so my viral load was, yeah it was quite down, my CD4
had gone up.

So, I met a woman and told her the stats and we ended up getting married and we had a pretty
normal sex life for a couple years, like it was still using a condom right and then – but I was
undetectable, still using a condom. And then we got to the point where we didn’t use a condom
and it was like and she remained fine and they said you are safe, but I didn’t really feel it, you
know what I mean? They were saying the chances are slim or low, right, but I still believe it is
responsibility. I can tell her, Montaner can tell her, but it is still up to her, so she decided not to
use a condom and we had regular sex, and we divorced not because of my HIV but because of
my addiction, and she has been fine ever since. So, that divorce kind of took me hard and my
addiction kept popping up, and if I was in my addiction, I wasn’t taking my meds, and the
starting and stopping was starting to happen again, so… But things were, they were supportive,
and that time I was starting to volunteer at Positive Living, doing an afternoon shift at reception.
I just remember, I wasn’t working at the time, I remember it gave me some self-esteem, no
matter how fucked up I was. And that is when I really got involved with Positive Living and I
did volunteer work, I got really knowledgeable about HIV and got really involved in, and things
were good.





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And then in 2011, so I have been a volunteer there and working part time somewhere else, then
they came up with the peer navigator program through Vancouver Coastal Health, and what they
were doing was a lot of testing on the Downtown Eastside and they wanted to get as many
people tested as they could so they could get them on treatment. So, the peer navigation
programs started there, it is obviously expanded now but it started there, and I remember there
was a lot of training, and we needed to know all the new medications, all the support, we need to
know our stuff, so we learned a lot. And we got into the science of it, and even then we were
telling people, if you are undetectable, you can’t give it to somebody but that, even the last few
years, now we know for fact this is science, you cannot give it somebody. You are undetectable
for six months, you are undetectable, it is impossible for you to give it to somebody else.
Impossible? But it really is. There is nobody that has been diagnosed or passed on the virus while
being undetectable. What happened to me was they hired me, so I was, again, the only straight
peer navigator there, the rest were women and gay men. And what I really liked about the peer
program was they had a peer for about everybody. If you were a young gay guy, we had a peer
for you, an older gentleman, we had a peer, a woman, we had a peer, Native, we had a peer, and
then little old me.

And I also joked that I was the token guy there, of course the guys I got, they were my guys – it
wasn’t just that they were straight, they had drug addictions. And I have been doing this for
seven years now so, and I was doing twenty, thirty hours a week, so my guys were like, go find
them right and bring them back to the hospital, ‘cause they don’t have phones, and support them.
If they are newly diagnosed, you can support them, which is great but I can also tell them my
own experience – you need to take this seriously, you need to commit to it, the starting-stopping
won’t work. But that brings up a whole other social issue – if somebody is homeless and doesn’t
have food, as well as addiction, he is not ready to be on medications, it is impossible for him to
be on medication. We support them anyway, we know they are HIV positive and not on
medication, that’s fine, but we try to support them the best we can. I can share my experience,
and so like today are you ready to go on treatment? As a peer, we were still trained every
Wednesday morning for two and a half hours, being updated on new meds, but also how to
counsel somebody, how to support somebody, and we navigate the system. If there is a new
diagnosed person and I don’t care who they say, oh you are HIV positive, and it is like, it doesn’t
matter, all they hear is AIDS. It doesn’t matter how far we have come, all they hear is AIDS. So,
we have to educate them, I have to educate them. I mean people know HIV is a treatable illness
today but there is still the fear and stigma around it, and sometimes as a peer I can also tell them,
give them a reality check, “You don’t know how lucky you are to have this. My generation, you
were dead in a few years,” right?

Today, if a twenty-year-old, newly diagnosed guy comes in, or woman, I said that is shitty but
you are going to live a long life, you are going to have children, you are going to have a normal
life. In fact, if you are just out fucking around once you get on treatment, it is, you are golden,
you are on treatment, you are not going to transmit anything to anybody. If you are out having
sex with strangers, you have no idea what their status is, that is the whole idea, get their status
known and get them on treatment. So, I support people with that. And I still have the addiction
piece, and we have the satellite office at St. Paul’s, and they saw the importance of having that
peer in that office, so when someone comes in, they can go and sit with them with the doctor and





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kind of dumb it down for them. Explaining what they meant by that, although St Paul’s is
awesome, but we can support them in other ways. From my own experiences, being an alcoholic,
addict, going to a support group where my peers are, they can relate, they know what it is like to
be struggling with an addiction or recovery. It is just one addict helping out, and it is kind of the
same with HIV, it is just one person helping another. I was doing my outreach and a year and a
half ago and they saw how successful that was and they decided to open a rapid access clinic
downstairs and they decided to use the peers from Positive Living to come down and do
basically the same thing with people and their addiction. Obviously, the peers would have to be
in recovery themselves, but basically the same principles, one addict helping another, and it has
been so successful. The last year and a half we have three peers down there now. So, and even
today, somebody from another organizations stopped by and wanted to know about the peer
program, and Canadian mental health, cancer used a peer program, so I am grateful that I was a
part of that at the beginning, and I can see that it is expanding.

And I love getting the newly diagnosed – what I am here to tell them is I’m twenty-five years
[HIV positive], here I am sitting here in front of you, right? You are going to have a longer life,
you are going to live a long time, and I am here to support you, but let me tell you how we are
going to do that, and what the doctor explained to you. But if you need help, we are here to
support – we have, at Positive Living we have a navigator for every type. But thinking back at
the old days, it was just, there was no – not going to blame my addiction, but it was so bleak.
And then you saw people, and of course – and then you connect with Positive Living and people
are dying, and it was people were dying all the time, and how they were treated as human beings,
it was like I said, like they wanted to put them on an island. So, my empathy, obviously from
getting it, but oh my god, it is a death sentence, and the prejudice that came up – you deserved it,
well the same again with a junkie. I deserve it? Well, fuck, you know what I mean? And we are
seeing that stigma in the addiction community, people going to St. Paul’s before they had the
addiction program, you are a junkie going to the hospital, you are just a junkie, and if you are
positive you are dirty, you are dirty. What is that, I am dirty? So, self-esteem and what the
community thought of us, and if they did find out, they would treat you like you had the plague.
So, the society itself had to grow.

And I have noticed people – everybody that knows me knows my status. To me, it is the least of
my problems today. I take a pill, I am done. I have a life, it really is, and nobody cares that I am
HIV positive. When I have a girlfriend now, it is really easy – my rule of thumb is I always tell
them on the third date, that way, they get to know me a little first, like am I worth it? So then, I
explain, and I am still educating people that don’t have it, and I think that is what other positive
HIV people do today, is educating other people – that is part of their job, you need to educate.
People still have their, like, ideas about it, and unless we are all talking about it – and I mean, I
remember Magic Johnson, and they all thought he was going to die right away and I think he is
thirty years, so he has been a long time. So just supporting each other but also just educating
people in general. And again, when I tell them on the third date, I go into a spiel – you really do
want to have sex with me because I get tested every three months, my bloodwork, and if there is
a slight problem, they are on it. But there has never been a problem, but they are testing me for
other problems, and you could go have sex with some other guy and good luck. I am joking but
only half joking. And yeah, I have never had somebody not have sex with me because of my
HIV, because I explain it properly, but I was trained to explain it as well so…





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And the other thing was those criminal cases that were just insane, people that were charged with
aggravated sexual assault even though there was no chance of them transmitting the disease or
the virus. That was the biggest struggle for the last few years, and that is why I remember taking
my girlfriends to the doctor, not only to explain, but as a witness. So, now I think it is getting
better, they aren’t prosecuting people like they did. But I remember there was a guy on the news
who, the RCMP put a public warning out for him because he was a danger to others because he
was HIV positive and they put his picture on the screen. I knew that guy too, ‘cause he was
actually, gave a talk at one of our conventions, and he had two kids and a wife, and he was
undetectable for a long time. And what happened was he had a divorce and basically he went
sleeping around, like I think any divorced guy might do – so what? That is his life, right? But
then he doesn’t disclose, and so to me it has always been this – you get one pissed off person in a
relationship and they, even if you did disclose to them, “Oh, he never disclosed to me” – he said,
she said. People get upset after breakups, or they find them sleeping around. So anyway, they put
his picture up, and if any other women have slept with him, give us a call. And I had so much
empathy for him, but I remember people on the news and people in chat rooms saying he is a
piece of shit and he should be prosecuted to the full extent, and it brought it all up again, and
how you can be charged, and it’s impossible. So, that case eventually got dropped because they
had the science – the doctor, his doctor was explaining to the court, it is impossible.

The law needs to change. The laws need to change because at the beginning it was very
confusing as well – if you are homosexual having unprotected anal sex and you can be charged
with this and that, but if you are heterosexual and having using a condom and sex vaginally, you
don’t have disclose, So, but if you are having sex, you know what you mean, it was really
confusing. And again, what that was causing, that decision at the that time of charging him, what
that did is put other people’s lives at risk, because why the hell would I want to get tested to see
if I was HIV positive when I can be charged with aggravated sexual assault? I would rather not
know or say I don’t know and do whatever I want to do. So, it went back twenty years. Like,
why would I want to – and I have some guys today say, “Why would I want to get tested?” And I
say, you know what? You could be, but they are sort of not doing that anymore, but it is a hard
sell for me, ‘cause would I want to today? I don’t know if I would want to get tested just for the
legal reasons. I mean, now I know getting tested and getting on treatment is really important, so
it has brought up a lot of debate, but I don’t know with the new attorney general, he seems to be
on board. But it is so up to the prosecutors whether they prosecute a case, ‘cause in Toronto they
were prosecuting people all the time, and I mean sexual aggravated sexual assault – it is like
rape, it is the worst, for a guy who just had sex with somebody who knows there is no way to be
transmitted. So, that is the challenge of today, but supporting people today, I also understand that
if somebody did this on purpose to somebody else, I am all for, yeah, that is wrong, they should
be charged with that, but if there was no intent, the science is there, like fuck off.

Working on that, and again, I support people when they are newly diagnosed or are struggling. I
try and just share my own experience, and… But I have such gratitude today that I am here today
because in 1993, and even up to ’96, people were dropping like flies and it was just like, you had
no hope. And I was talking to another long-term survivor, and it was just like we got lucky, we
really just got on the curve, and we just did it right because our activities might not have been
showing that but we were doing – we just got lucky. It was just the alignment of things. There





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was one doctor who said, “If you keep screwing up on your meds, you are not going to do this.”
So, kind of looking at my addiction at that time and starting to work on it helped, so it was just
timing, because if I hadn’t, I would be dead, and we know so many who are dead. And with the
pills, again with the meds, we see today the after effects of those pills, the physical after effects
of lumps on the back and neck, and it’s brutal. And so sometimes when I get a guy who is
complaining about this stuff, I will give him a quick talk about, oh you have to take three pills a
day that are going to fix you in a month. I know, that is tough. Or you got to take one pill – I take
more vitamins than that, you know? It’s just one pill. I am also so grateful that I lived in this city
because it was an epicenter, between San Francisco and here. And that hospital that I am looking
at saved my life, and Dr. Montaner who is now a superstar in the HIV world who is not my
doctor anymore, so [Name] is. They just know their shit, they save lives and also timing too, like
he was not – Montaner was not going to be an HIV doctor when he first came here from
Argentina, he had another plan, and things happen, and look at today. But I will always be
grateful for the people at St. Paul’s, the specialists, Positive Living BC and the other
organizations that helped and supported me. Also, I have a job today because of that. I have a job
that I am doing because I am HIV positive, and I wouldn’t change a thing now. I am paid, and I
am paid well, I do outreach work and I do work here, and I don’t see myself going away from
this for a long time. I am really grateful.

BK: It is an amazing story and thank you so much for sharing it with us. And it is really amazing
that you have kind of come full circle.

P: I have, there is no doubt about it, and now I am getting a little emotional. I am glad we are
doing this ‘cause sometimes I take it for granted. It is good to remember the past because I also –
with the AIDS wall down in Stanley Park there, there would be a vigil every year and they would
be huge, and there would be these things. And it is kind of all rusted out and people aren’t
respecting who came before us. And also it is like the – I can’t say enough about the advocates of
the gay activists who actually got this shit done, right? They fought – they fought for medication,
they fought for their rights, they fought for health care. The archives at Vancouver, at Positive
Living and at AIDS Vancouver, I look at it at times and I have seen some videos of the past, and
it is just like these guys gave their lives really for my life today and I have no doubt about that. If
there weren’t advocates, we wouldn’t be where we are today.

BK: Did you see a lot of that activism or advocacy yourself?

P: Not like – I seen it, but it is like, and there have been advocates for the HIV positive person
and AIDS Vancouver either for funding or support from the government, it has to be keeping
being done. However, those advocates in the ‘80s where people were dying and people did not
want to treat them, they wanted to send them away, they demanded somebody to investigate to
find a cure, to be housed, to be treated as human beings. Those advocates of the ‘80s, and I
believe most of them have passed – in fact, I am sure pretty much all of them has passed because
from ‘80 to ‘96, to live that long was unthinkable, right? It was really ‘96 when it changed, but
you were an advocate, and maybe – I mean even that, I can’t remember that movie that just came
out about the right to medications and they were smuggling drugs from Mexico.

BK: Oh, Dallas Buyers Club?





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P: The history of that is amazing, and they heard there was a treatment down there, how do we
get it up here? How do we get the meds? The prices were unbelievable, that is the other thing I
remember. I was taking $5000, $6000 a month on meds – I was looking at that, right, that is what
it said – but it was being covered by St. Paul’s and the government of the time, and I also believe
the BC Government at that time was really supportive in a way as well. But it is also like, look at
the prices on these bottles – there is no way I could have afforded this, I would have died. And
that was the other – we still advocate. Most countries are covered now, but at the time they
weren’t covered. Like in Africa, there was no treatment going on there, people were dying, and
still dying in the ‘90s, and the AIDS babies – it was just, oh my god, it was fucking horrible. I
have a lot of gratitude, and again, I am really glad we are doing this because it makes me think
about this again. I take it for granted but I should never really take it for granted, because people
gave their lives for me to have my life today.

BK: Is it still a gay disease today, do you think? The guys you talk to, is that still the perception?

P: No, and that came into its own too, right? We educated people – it is blood transmission, well,
you took a needle out of a guy’s arm and put it in your own, it is transmitted that way. It was
over the years, the myths being debunked, like sneezing on somebody or sharing their fork, this
was going on through the years. And then, and addicts they are quite educated in themselves,
realizing, and that is the part of addiction too, ‘cause you know sharing a needle could put you at
risk, but you need that drug so bad that you will take that risk at that time. Also, with the
advocates in the addiction field of getting free needles, of getting their own supplies, of getting
things, there was a lot of people that were such in that low place, getting HIV, they didn’t care –
maybe this will end my own misery. But now most addicts are educated, they have been
educated by themselves and their fellow peers.

BK: You talked about when you were diagnosed in ’93, it was a death sentence. When did it start
to dawn on you that it wasn’t going to be?

P: I vaguely remember in ’96, ’97, they were really selling these new meds and I was like – and I
also trusted Montaner, and it was like… No, he said, “These are fucking…” – he swore – “If you
give them a chance and you stick to a regiment…” And I went, okay. And then again, the results
were quite amazing, right? My viral load was nil and my CD4 had come up, so also there is the
facts ‘cause you saw – you got your, every three months you got to see your load, and yeah, so I
knew it was going to be then. And again, I also knew that it was my addiction, that is the thing –
if I can’t get my addiction under control, I am not going to be able to maintain my meds, but I
knew if I did that, the rest would follow. The scientists were saying this was working, there was
proof, there was people talking about, and they drop fast, the viral loads dropped really fast.
They weren’t dropping fast with those other meds if at all, and the other side effects – but yeah,
the science was there.

BK: And stigma we talked about a little bit. What has changed and what hasn’t? You talked
about disclosure laws.






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P: I guess that is what we as peers do, we express – we can only talk about our own experience.
My experience with HIV is going to be different than yours, even the long-term ones, yes, but
our experiences are a little bit different. Just being respectful of that but also that we made it.
And I can – like, a newly diagnosed person, I can educate them all I want, I can support, but
really it is going to be how do they process it? I can give all the facts and figures, but you still
have to process it yourself. And I just said earlier, even today we can talk about HIV being the
virus but again people today they still think HIV and AIDS are just the same, and so I can
explain to them that it isn’t and why, but still they hear it and they think it is a death sentence and
it’s not and – or their life has to change, so we can educate them, but it is a lot to experience at
that time. Most people are, even with newly diagnosed, and they are happy and stuff, and they
understand, and I have given them hope, when they go home later, they still have to process this.
And the brain, how it processes is it still – we can tell you it’s wonderful, but I have got this and
how did I get this? And we still have people saying, straight guys coming in, I don’t use needles,
I don’t, I haven’t had sex with a man, I think I got it – yes, you could get it from a woman.
Scientifically it is not that common, but it can happen – but the toilet seat and it just, and even
today it must have been from a dirty toilet seat, okay. And that is the other thing, really we don’t
give a shit – we don’t – how you got it, it doesn’t matter. Let’s just deal with it, and if we can
leave that part out of it, that is good, ‘cause now we can just deal. How you got it is your
business, but with the health nurses being involved too, like tracking where it came from, but
really the bottom line is let’s just treat it and we can go from there.

BK: I also wanted to ask what kind of programs did Positive Living have when you started going
there?

P: They would have a food bank – no, that was AIDS Vancouver, but they would have a lounge
there. And it’s the old – our brand-new building is where our old building was and the smoking
lounge, but they would like, they would do, there would be crib games and support, and just a
place to hang out, and also a support group. And they were always expanding too, right? I
remember they had Loon Lake and that was a huge. My first time I went to Loon Lake, it
changed my life, ‘cause I remember going there and being somewhere where people having HIV,
and different levels, and just like to go there and have fun and not be afraid of any other people
knowing, your guard was down. I could just be me here, and it is a beautiful place – it really
changed my life and actually, when I came back form that trip, I said I want to volunteer at
Positive Living, I want to do something back for them, ‘cause I was just so grateful for that trip
and the bonds. Positive Living, now we have the prison outreach, we have the peer program, they
have Suits, and Dudes, they had a straight group going too, they have a male dudes, not a male
dude, but a straight male night where other male guys can hang out and do stuff, they have a
woman’s group – I mean they have so many different options or programs going on, it is
expanding all the time. It has come a long way from the 80’s ‘cause I think it started in
somebody’s apartment in the West End and grew from there.

BK: And a long way from when you got involved and was the only straight guy there.

P: And now that’s not true anymore, there are quite a few of us there now. It was funny because
there was a stigma, there is still stigma out there. Okay, we are all HIV, but there is a stigma –
you are straight, you are not – and how we got it, right? We had stigma among ourselves, I am





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guilty of it myself, we had this stigma, well you got it through your sexual activity – well, you
got it through your drug use. It was bullshit but we had these stigmas, and I got to know the gay
community pretty well, so the stigma of, okay, as a gay person you would have your own
support, being gay has its own challenges, too right? But I remember a few people saying, yeah
but we were supportive together because we are gay, but if they find out you are HIV positive,
you are kind of at a different level. The own stigmas in our own communities, and that is
everybody’s communities, there is always stigma or prejudice towards each other, even though
we are the same. There are those prejudices still going on today, and I know some people that
are, that still goes on today from what I have heard, but it is getting better, I guess. And that is
why I mean the Loon Lake thing, it didn’t matter if I was straight and he was gay, we were out
there having fun, and we just put our own prejudices aside, and we looked at what we had in
common, and it was a beautiful thing. And I feel that was today with Positive Living, it doesn’t
matter if you are gay or straight, we are here for each other, we help each other, that is what we
do, so that is pretty amazing.

BK: Is there a sense of an HIV community then that is independent of the other communities?

P: That is what I mean, that can be a stigma in itself. I mean, I don’t know how that is going to
play out but as far as I am HIV positive, I can relate to you, but I can’t relate to you being gay
and HIV positive – you can’t relate to me being straight and HIV positive. So, when I do find a
person who is straight and HIV positive, I can really connect because they can understand. We
have our own little stigmas and prejudices against, being thrown against us, right, and vice versa.
I don’t know what it is like to be gay and have the stigma of being HIV positive – I can be
empathetic, but how am I understanding it? Only two other people would understand that
together. I am in AA and NA so we talk about alcohol, right, we are supporting each other, right?
Even alcoholics anonymous, there are gay groups, there is a pilot’s group, we are all alcoholics,
but you know what I mean? For pilots they have their own little – meaning nurses and doctors
have their own little meeting, but in general we are all alcoholics. Pilots I can understand, there is
going to be some judgment of pilots who are alcoholics, so it is good that you are getting some
help and supporting each other in your own group. It is a sub-species within a species – we can
say the bottom line is we have this in common but there are other issues that come up and it is
important that we talk to each other about that.

I have had – I am thinking about sponsors and sponsorships. Most gay men have female
sponsors, and why? Because they feel safer, there is more of a connection – not all, so whatever
you are comfortable with. I really don’t want to judge how you do your program or how I do my
HIV program, we have a similar message but it – find out where you are comfortable and today
we can go anywhere and we will find our own people that we feel comfortable with, right? And
it isn’t being prejudiced against other people, it is just I feel comfortable in this little group
because you can’t put all HIV positive people under one banner. Because it isn’t a gay disease, it
has nothing to do with being gay or straight or a drug addict. It is HIV that we have, but when we
put it under one banner it is good for certain things, but we also need sub-banners where we can
talk and support each other. And that is why the peer program is so successful – we have a peer
for everyone. Now, does a gay man in his twenties want to have me as his peer? We have
nothing to relate to – what am I going to talk about? What is he going to talk about? But having
another young HIV positive gay man, they can relate on being twenty and gay, or twenty and





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straight. I can relate to being fifty and straight. I can remember being twenty and straight – it is
really important you find your own support within the support system. That is how we make our
friends through similar activities or beliefs and non-beliefs.

BK: I don’t have a whole lot of other questions. I know we have touched on this throughout a
little bit, but do you have any advice you would like to share with folks who are newly
diagnosed? You have twenty-five years of experience.

P: If you are newly diagnosed, we are lucky in this city, if you are diagnosed here there is lots of
support here. If you are newly diagnosed, there is somebody who can help you. Go to Positive
Living BC, they will hook you up, or if you are in the hospital they will hook you up with a peer,
they will find a peer for that twenty-year-old, or the fifty-year-old that is nearly, they will find
that too. You don’t have to do this alone, you don’t have to be ashamed, or in the closet about it.
We have been where you are at, we understand, and we can help you navigate the system, and
we can support you. I wish I had somebody when I was newly diagnosed that I could relate to or
talk to. I was in the closet, I had nowhere, I didn’t know anything, and they didn’t offer me
anything. Luckily, they hooked me up with the right hospital. I didn’t want people seeing me
going in, I had no one to talk to, nobody I knew, none of my friends had HIV, I was alone. And
you know this can happen with senior citizens, there was an eighty, ninety-year-old who got
diagnosed recently, and there is help out there for him – you aren’t alone in this and we can help
each other. For me it is about helping, the newcomer can help me as well, but we can help. I have
been so grateful for the people who have helped me over the years, so I want to give back,
because I will never forget those people who helped me. So yeah, I would say, just reach out, or
we will be reaching out to you. We never force someone, a peer navigator on somebody, we
offer you if you want something here are the options and today you have a lot of options. But I
would reach out to somebody and reach out to a friend or whatever you have at that time, but
there has been somebody who has walked in your shoes and they are here today and they are still
around, so I would encourage people to do that.

BK: It certainly feels like we have come a long way. Is there anything else you wanted to add or
anything I haven’t asked you about?

P: No, I am just going to add this, that having this history – I was thinking about it, this is so
great that you are doing this, ‘cause I know, like I said it brought up some memories from my
past. But looking at the history of anything is, we need that, we need record takers, we need
people to remember this time, or that time, so the next generation can understand. So, I am really
grateful that you guys are doing this and that it is going to be recorded, because we don’t ever
want to forget, right? With that thing with the president down in the US, we are all immigrants,
they were immigrants, and most people here were immigrants, so to hear the history of how that
happened, they didn’t just become America one day, we didn’t just become Canada, it took a
history of people to make this country. So, keeping, having a knowledge of the past, whatever
the level may be or whatever the subject might be, because people don’t want to forget. So, I am
grateful for this.

BK: Thank you so much.






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P: Okay.

BK: Unless you have anything else, I will just stop this.

P: Yeah.