Interview with J. Moffatt Clarke

17-11-20-MC.docx




“HIV in My Day,” Moffatt Clarke (November 20, 2017)

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HIV in My Day – Interview 10

November 20, 2017
Interviewee: Moffatt Clarke (MC); Interviewer: Ben Klassen (BK)

Ben Klassen: I’m talking to Moffatt. Thank you so much for being here and for agreeing to
share your experiences of the epidemic. We like to start the interview by asking people, by way
of an icebreaker, how you started engaging in gay life or when you became part of the gay
community.

Moffatt Clarke: Oh my, well, I have a little story. My sister moved to Vancouver when I was a
young teenager – she is the eldest, I am the youngest, and knowing that her little brother was left
to fend for himself in a dysfunctional household over the summer times, she would invite me
here. It was the summer of 1973, so I was thirteen going on fourteen, turning fourteen in
September, and I – to make a long story short, I had my first blowjob in Stanley Park. So, I kind
of planted the seed here that was best and to grow, and so… [laughs] Um yeah, I ultimately
moved here many years later and stayed put.

BK: That’s an interesting first experience. That is some introduction to the community. And
when you were actually – that is kind of one sexual experience. When did you find yourself more
immersed in the community? Presumably before you moved to Vancouver?

MC: It was. I grew up in the suburbs of Toronto, in Willowdale, close enough to Scarborough
that I had to go to high school across Victoria Park, into the depths of suburbia. Actually, after
that blow job experience, I phoned a youth crisis line in Toronto, which turned out to be a real
blessing in disguise because it turned out to be a Christian organization focusing on wayward
youth and they started proselytizing to me, and it felt really awkward and uncomfortable. And I
thought, “My god, these guys are more fucked up than I ever am.” But then I kind of gravitated
to Gay Youth Toronto and made my way downtown to the Church Street Community Centre, or
I think it was some guy’s apartment actually, first. And the initial discussions, I was probably
sixteen-years-old, and by the age of seventeen, some of my friends were going to gay discos to
dance and I would accompany them. And came out to a high school guidance counsellor at age
seventeen, to my girlfriend at the time, and then had a year in Brazil as an exchange student after
finishing grade thirteen, and came out to a considerable number of people in Brazil, and had
some great sexual experiences. And then first year of university, in 1979, immediately joined
gays and lesbians at U of T. I was at Trinity College, which was an Anglican eulogical school on
campus full of raging queens, trying to become Anglican priests and then became quite an active
participant in GLOUT, Gays and Lesbians at U of T, early-‘80s, during the bath raids, organizing
gay and lesbian awareness weeks on campuses, homo hops at the Buttery, which were quite
lively quarterly events that the whole gay community were invited to. So, I had an early start and
a healthy start.

BK: That is quite amazing actually, considering this is the ‘70s. I’m going to guess that gay
liberation is in full swing, but it is still pretty remarkable.

MC: Indeed.





“HIV in My Day,” Moffatt Clarke (November 20, 2017)

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BK: What did the community look like at the time in Toronto – pre-AIDS gay community?

MC: It was exciting. It felt dynamic, it felt cutting edge, intellectually stimulating. I became a
volunteer at The Body Politic and met the entire crew there, the collective. I was just working
reception and remember sitting with Rick Bebout and we heard clomp, clomp, clomp – they
were on the 4th or 5th floor of a walk-up warehouse, and he started getting very excited because
he recognized the sound of the footsteps. And it was Jane Rule, so I got to meet Jane Rule, and
Rick Bebout introduced me to Jane Rule. And the book just came out about their correspondence
between each other over the decades.

BK: She lives out here now, doesn’t she?

MC: She has deceased now but yes, she was a Galiano Island writer of some renown actually.
Quite a brilliant mind. And then on campus, Gays and Lesbians of U of T was quite fresh and
new and very dynamic and we kept pushing the boundaries and February 14th was kind of Gay
awareness day. I think it still is actually across the country on campuses, around February 14th?
And we would sit at tables and busy classroom buildings and information tables. And then the
bath raids happened and it kind of electrified the whole city and the empowerment in the face of
the horrible oppression was very exciting. It was – I was steeped in queer politics 101, and even
on campus it wasn’t just GLOUT, there were gay academic unions. I remember feeling very ill at
ease at a very intimate discussion one evening with kind of high-minded academics talking about
queer theory. So, this was ’81, ‘82, and the disco scene was alive and happening but I wasn’t
really into it at all and I didn’t go to bars much ‘cause I’m not much of a drinker and I am rather
soft spoken and short stature so being in a bar situation surrounded by tall people having to
project my voice, it just didn’t work.

And I found myself in a relationship in the fall of ‘82 with a fella – we shared the same last
name, Clarke with an e, and he also went to Trinity college. He was in his first year and I was in
my final year, and we met at a Friday night GLOUT meeting. And George Hyslop was the
featured speaker that evening, who I think had just run for city council, and had been defeated,
but he was a prominent name in the gay community. in the day. I am getting pumped just
thinking about all of the things going on. Must have been ‘82 or ‘83 maybe. For gay and lesbian
awareness week, we mounted quite a large display in Robarts library, in a glass case, depicting
the bath raids. So, we had brought in some lockers from the Phys. Ed. department and had
bashed them in and had towels ripped and bloodied around the area, and handcuffs – it was quite
powerful, right in the front entranceway of the main library in the main university of Toronto.

BK: Your involvement in the community was quite politically inclined in a sense.

MC: I suppose, but it was more my academic upbringing. I was a university student, so I tried to
make it relevant to my field of study which was Latin American studies, and it just so happened
that I had won a scholarship in 1982 to go to Brazil. I was studying Portuguese and did well in
language. For my research topic, I opted to do a fourth-year independent studies under one of my
professors, and elevated to look at the mobilization of the queer community in the dying days of
the military dictatorship, and that was in 1982. And I remember speaking of my intentions to the





“HIV in My Day,” Moffatt Clarke (November 20, 2017)

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holder of the scholarship and he had never heard of such an approach. Most students went to
Portugal to the Algarve for three weeks of intensive immersion, and here I was. I kind of skewed
the general paradigm of things. And so being in Brazil in the summer of ’82, it was very
exciting. So – and that is in ’82, I first learned of HIV ‘cause I was living in residence at Trinity
college and one of my dormmates two doors down was studying medicine and one evening he
slipped under my door an academic article from September ‘82 around the initial discoveries of
gay cancer as it was called. And so, you know, it was alarming but then I found myself in a
relationship at the same time, so my intimate life was directed away from the community of
bathhouses and whatnot and more focused on one individual. So, I’m rambling now…

BK: No, that is great. It is exactly what I was going to ask you next. So, when did you first hear
about HIV and AIDS, and what was your – you kind of alluded to your initial reaction, so what
was your initial reaction? Was it “it isn’t going to affect me because I am with a partner now and
I’m not engaging in the bath culture?”

MC: I don’t think the focus was on risky sexual behaviour because it was an academic paper and
I didn’t really understand it. I wasn’t a science student, so I probably put it at the bottom of a
reading pile and probably didn’t pay much attention to it. I guess the next time that it kind of got
in my face was at one of the early pride celebrations in Toronto in the park behind 519 Church
St. community centre. There were the Sisters of Perpetual Indulgence, they had a table and were
passing out literature on tips on how to stay safe. And one thing I do remember from that was to
have a pee after you’ve had a sexual encounter to help the body flush out what – to be of some
assistance. I don’t remember condoms… I can’t recall – it was so long ago, I was so young.

BK: I know, it would have been very early on in the epidemic.

MC: Very early on.

BK: So, the consensus that began to emerge around safer sex, or safe sex, [later] maybe wasn’t
quite there yet.

MC: And my interests didn’t lie there. I gravitated more toward solidarity with Central America
and the Sandinista cause and Nicaragua. And in fact, at the last gay and lesbian awareness week,
I helped organize a panel discussion at Hart House bringing together gay activists – in the
environmental movement, in the Central American solidarity movement, in the labour
movement, and the gay activists, bringing four voices together to see if we could find common
cause. So, in a way, it was kind of like intersectionality back before such concepts exist, but I
knew all these guys. In fact, I guess through my central American solidarity work, I met a lot of
gay men who were mobilizing around Chilean refugees after the Pinochet coup in Chile, and
Argentina was nasty and dirty at the time, and then of course my experience in Brazil. And on
that panel, we had a young gay man from Brazil, who had sought refuge in Canada and was
talking about his experiences. [Name] was in fact my partner at the time – he ended up going
into social work and it was his area of focus, so I think much of my early AIDS education was
from my partner at the time






“HIV in My Day,” Moffatt Clarke (November 20, 2017)

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BK: What did that look like, the stuff your partner might pass on to you? Was it stuff he was
learning from engaging with people who had HIV or was he doing preventative work?

MC: He volunteered for the sex ed centre on campus and I can’t really remember what his
precise role was. But then we had friends in common who became volunteers at the AIDS
Committee of Toronto and I found it kind of scary and intimidating and felt uneasy actually
because it was so outside of my scope of experience. I didn’t really know anybody who was
directly impacted by HIV until 1986 and that’s when a friend of mine became ill and died. And
again, it was worlds colliding because this man’s name – it’s in the public record – had come to
Brazil as an exchange student following me. And just prior to my departure from Brazil, through
the rotary club, I was allowed to look at his dossier with his picture and his 500-word essay as to
why he wanted to become a rotary international exchange student. So, I came back to Canada as
he was going to Brazil from Oliver, BC and maybe a month after that happened, I got a letter
from him and we corresponded throughout the years. He was there and gradually throughout the
year the dots became connected and he said we probably – we certainly know people in
common, we probably have a few things in common too. And so, by the time he came back to
Canada it was quite clear we were both gay which was quite interesting because we were the first
two Canadians sent to this town, so they were probably talking about these queer Canadian boys.
And then he ended up studying at Carleton University, so then we met for the first time. I think
he came to Toronto or I went to Ottawa, and it was wonderful. It was like, wow, we’ve got all of
this shared experience. And then – so, guess he was there – I was there from ‘78 to ’79, so he
was there from ‘79 to ‘80, and then he started Carleton in ’80. And then I got a letter from him in
’85, which he told me he wasn’t well, and I went to Ottawa to visit him. And at that time he was
in intensive care and he was in a coma and it was horrendous because he had encephalitic
infection in his brain. He was blind, he was demented – it was very tragic. So, he dies early ‘86
and so that’s when HIV/AIDS kind of hit full force.

By that time, I was employed by Cuso International development organization, and I must say
that Cuso in the day was very understanding – it was full of activist oriented international
development types. They were very accommodating to Ron and me as a couple, they allowed us
to apply for same-sex spousal benefits before such a thing existed, they actually put Ron on a
benefit plan as an individual. I suppose it was a stop gap measure until the insurance company
and our collective agreement, and the organizational policies caught up. And then when [name]
died, I remember I was actually kind of co-hosting a Cuso event, ironically at the international
students centre on campus at the U of T where I met Ron, and I remember I was a puddle of tears
and nerves and people came around and consoled me. And then we start an HIV/AIDS focus
group at Cuso because a lot of our locally engaged staff in offices across Africa, across the world
were succumbing to AIDS and we needed to quickly respond with an AIDS in the workplace set
of policies and questions. Like, what if we send a Cuso volunteer from Canada with HIV
overseas? What are the implications? I was part of a small internal staff group to kick start a set
of guidelines for Cuso. And at that time also, ICAD was beginning to take form which was
Interagency Coalition on AIDS and Development, and while I was still in Ottawa, John Gates
was hired as the first ICAD staff person. John came from Vancouver and had quite a history here
on the ground as being a human rights activist at UBC, a very out and proud gay man. That was
when everything started getting whipped up in a very real and compelling way in my personal
and professional life.





“HIV in My Day,” Moffatt Clarke (November 20, 2017)

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BK: And it accelerated thereafter, fairly quickly, your involvement in responses to HIV and
AIDS?

MC: It did. Certainly, my life took a course towards HIV. Ron was doing interesting work
around social work and the practice guidelines around how these professions self-regulate and
what it means to deal with HIV/AIDS as a social worker in practice. And so, he had been hired
by the Canadian Association of Social Workers to shepherd that – we had moved from Toronto
to Ottawa in ‘86. He pursued his MSW at Carleton focusing precisely on HIV/AIDS as an issue
for social work practice and I was involved in my employment. And then the next big thing was
in ‘89 I took a year off work. My dad had died and left, as an inheritance, the family home in
North York, and so we ended up – my brother was the executer of the estate. We sold it and we
each got a handsome amount of money, $100,000 each. So, I immediately invested in myself. I
took a year off work, I went to the University of Ottawa. They had an graduate program in
international development and even though I had been working for an old established renowned
agency, well I’m just going to bone up on my academic, because I was working administrative
jobs at Cuso. So then, I decided to focus as much as I was able on HIV/AIDS as an issue for
international development work so that led me spinning off into all sorts of interesting new
directions.

The International AIDS Conference had been in Montreal in gosh – ‘86, ‘87? ‘88? Ron ended up
going because of his specialization and graduate work. You know, the Brazilians were there and
some very interesting things prevention-wise. So, part of the U of O program required a
practicum at an international development agency, and a lot of people went to SIDA [?] across
the river in Hull. And I was on leave from Cuso and I had money in the bank, and so I said to
Ron, “Let’s go to Brazil.” So, I arranged a practicum assignment at an Organization in Rio called
ABIO [?] – quite a mouthful – but it was I think the first national NGO in Brazil focusing on
HIV and they were very receptive. And so, I said I will just come at no cost to you and I have to
write up a report on my experiences, so May, June, July, and August of 1990. So, we’re already
in 1990. I went to Brazil on a practicum for my U of O graduate diploma and that was an
education again, thanks to Brazil taking a kind of – immersing me in quite a monumental set of
issues which leads me…

So, after my experience at U of O, I went back to my job at Cuso and there was an internal
posting for a job in Vancouver at the Cuso office in Kits. And the Cuso office in Vancouver, the
regional office for BC had focused on HIV/AIDS as an issue of importance, so they were
beginning to work in a coalition to mount a campaign around World AIDS Day 1990. And, oh
my god, this is just too good to be true. So, I apply for the four-month interim position here, got
it, so came to Vancouver – landed here in October 1990 and immediately hit the ground running
with this coalition of groups, local groups that included international development organization
and all the ASOs, including AIDS Vancouver, Vancouver Persons With AIDS Coalition and on
and on – certainly Vancouver board of health. This predate all of the rearrangement of delivery
of care in BC and Blatherwick was in charge there and we had somebody at the school board
who was very active. So, I arranged to have a woman came from Rio to Vancouver who was
doing great programming, prevention programming, and we had Darien Taylor come from
Toronto, and we had a sex worker come farm Thailand – it was, like, we organized this very





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quickly. We did this Lower Mainland, Vancouver Island road show of women and AIDS for
World AIDS Day.

And then it was actually Rick Marchand who brought to my attention a job at the federal
government here in Vancouver as the program person responsible for funding community-based
agencies working on the ground around HIV. And I’m not – meanwhile my four-month posting
at Cuso turned into six months and I was replacing a fellow who had taken education leave – he
went back to finish his undergraduate degree at SFU and he found he had momentum and so they
asked if I wouldn’t mind staying on past four months, so January. I said you betchya – winter in
Vancouver, not in Ottawa. And then they asked if I could stay another six months until the fall of
1991. Meanwhile, Ron had applied for a job at St. Paul’s hospital. He was a freshly minted
MSW graduate and because he had contacts across the country in HIV social work, it was the
social work department that hired him here, so we packed up all of our belongings into a storage
locker in Ottawa and moved here. I applied for the job with the federal government and the
woman who was doing the hiring was familiar to me by name as she was a person who had
experience with Cuso in the ‘70s and we had many friends in common. So, I was vetted through
a board and was offered the position as what they called the AIDS Community Action Program
Consultant working here on Cambie street, and so that was it – there was no going back to
Ottawa.

BK: What did your role look like – that federal government role?

MC: Very ill-defined as it was a brand-new job essentially and it had been filled by temporary
staff people. So, when I started in Nov ‘91, it really – there hadn’t been a clear role for the job.
We had a budget and we had funding guidelines but very few people, and my responsibility was
Alberta, BC, and the Yukon.

BK: That is a lot.

MC: It was a lot. I had never been to Alberta before in my life so here I was flying into Red Deer
and talking to local ASO groups and then to Lethbridge and Grand Prairie, and so that was one
thing. And dealing with the provincial government of Alberta because clearly this funding
program for the feds was playing in the provinces and territories backyard – this was always a
big issue: where does our responsibility lie? And with HIV/AIDS, it was even more complicated,
because by 1990, ’91, there were needle exchange programs across the country but the federal
government nudged with both the carrot and the stick by offering cost sharing arrangements with
provinces to initiate needle exchanges. There was uptake here, obviously, in the Downtown
Eastside – John Turvey, the Downtown Eastside… oh my gosh, it is going back so long. Have to
do a fact check on that.

BK: Sure.

MC: Oh, mind fart. And then of course Mike Rekart, who was in charge of the BCCDC nurse
outreach program, among many other things at BCCDC. So, and then Vancouver Board of
Health, and then here’s the federal government showing up all fresh-faced and enthusiastic with
a big suitcase of money and really no one knew who I was or what the program was so I had to





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sort of sell a funding program. We didn’t really have any established process by which to
allocate funding. So then, this was true across the country – I had colleagues in regional offices
across the country and at that time there was a real split between regional operations and then
whatever happened in Ottawa. And we were really a rogue program because we were
accountable to nobody in Ottawa, all of our accountability came through regional offices, so it
was quite a learning experience for me around political science 101 and health care jurisdiction.
Like, who is on first, who is on second? And we had to proceed cautiously because we couldn’t
offload onto the provincial or territorial governments. We were constantly being accused of
meddling in their jurisdiction so we had to get everything approved and vetted and check marked
by BCCDC and the health board which meant establishing new relationships.

BK: Was part of that coming out of a sense that some of the provincial governments weren’t
doing enough?

MC: It was. The intent was to lead by example and to kickstart on a cutting edge issue that
provinces didn’t want to have anything to do with. And at that time, Vander Zalm was the
premier of BC, so you can appreciate the dilemma we were all in, including the BCCDC – and
they worked their magic somehow by… And I’m sure there are stories around how they
managed to do what they did in the early days without the ministry of health breathing down
their neck – that in itself is a separate research study.

BK: There were some shady dealing I think but necessary dealings.

MC: But just to go back to the women and AIDS day, World AIDS Day – WAD, we called it –
‘cause that really was my introduction to the lay of the land here in Vancouver and across BC.
We would meet, we would have organizations meetings, so once we met at… oh my god,
Vancouver Native Health Society and they were just fresh off of an idea page – they didn’t really
exist. And so, we found ourselves sitting in an empty space in the Downtown Eastside on East
Hastings St. There was nothing there. There was chairs in a circle and that was the Vancouver
Native Heath Society at the very beginning. And then we would meet at Oxfam and then we
would meet at Cuso, then we would meet and the school board and the Vancouver Board of
Health. And then when we hit the ground with our programing, I remember Darien Taylor and –
I don’t know if you need to fact check all this stuff – it was a panel of women speaking to high
school students. I don’t know – grade 10, 11, 12 – hundreds of them, early morning. And we had
a sex worker from Bangkok and a woman from Brazil doing prevention programming, and there
was Darien Taylor. And I remember Darien standing up with the mic and kind of getting
intimate with the crowd. You know, “I don’t want to make any judgements, but if there aren’t
any among you living with HIV now, there certainly… some of you will be living with HIV in
the not so distant future.” And I could just hear the whole room go eeee, the teachers the
administrator of the school – eeee. So, that was one moment that will forever be in my mental
filling cabinet. So, back on track.

BK: I think this is all on track. This is great to capture. So, by the time that you were in that role
– very early on in the epidemic, most of the response centered around prevention for gay men. A
lot of the work early on was around supporting gay men, AIDS was associated with gay men.





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And so, around the time you came into the role, who was seen as the “risk groups” at the time?
You already articulated the fact that it wasn’t just gay men anymore.

MC: It wasn’t, and in hindsight, the homophobia that was palpable at the time was just awful
because I think we identified seven populations at risk and gay and bisexual and Two-Spirit men
were in amongst the crowd. And it included youth at risk, so I remember in these meetings trying
to define what is a youth at risk? Aren’t all youth at risk? Or women at risk? This isn’t helpful.
We need to be more specific, so we tried to look at the data to inform the programming, and you
are right, the data showed that it was gay men, but there was a resistance to focus the program on
gay men, and the uptake in the community was limited as well. And so, you had lots of
organizing around youth, hence this World AIDS Day thing at schools – you know, they were
really interested in getting on board. Women and AIDS was an issue and so the initial formation
of the Positive Women’s Network. YouthCO hadn’t yet existed, so there were initial discussions
around youth. Ethnocultural minorities – so, we had South Asian community, we had the black
community. Healing Our Spirit was just getting off the ground and they were so fresh that we –
when we did initiate funding to them, we had to use a third party. We used the BC Association of
Indian Friendship Centres on the island as kind of an administrative home for Healing Our Spirit,
because they just didn’t have any infrastructure.

And then, it was only AIDS Vancouver really doing gay men’s stuff and again that’s a whole
different chapter of the book. And it was really Rick Marchand, the big circle comes around once
again, today in 2017. We see CBRC [Community Based Research Centre] and that is why I am
on the board of CBRC. And throughout the whole career of funding community initiatives, it
changed over time, and after ’96, it had a different flavour once the provincial government – we
had an NDP elected in the early-‘90s and they threw money onto the table and it had to be
managed responsibly and so there were all sorts of configurations on how to do that. And then,
increasingly over time, the federal portion of BC funding was getting smaller and smaller and
smaller and yet we were a national program and we had to work hand-in-hand with our
colleagues in the Maritimes and Quebec and Ontario, so it was quite a balancing act and there
were no dance steps laid out. We had to invent it as we were going. Here in BC, we did establish
protocols for administering the funds, so we did establish solicitations on a regular basis.

And there were two kinds of ACAP funding – there was operational and time limited and the
federal government has never been in the business of funding local organizations operationally,
but because this was such an extraordinary issue and the groups were so fragile and the provinces
and territories were so problematic in their response, we made an exception and we explicitly in
black and white, yes we will provide ongoing longer term funding operationally to cover
infrastructure. And over time we became more clear about what that meant as we were all
learning as we were going along. We would pay the salary of an education coordinator, we
would pay a portion of rent, we would pay for rental of office equipment, a little bit of overhead
admin. And then as the iterations, the national response evolved, we had the national AIDS
strategy phase 1, and they would have to go to the treasury board, and then phase 2 and it was
cobbled together with bits and pieces of federal response including other players in the game like
immigration. And then Health and Welfare Canada at the same time – under the direction of Kim
Campbell who was the Minister of Health for a nanosecond and the Prime Minister for even less





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than that – Health and Welfare Canada broke away, so suddenly we were dealing with our own
internal existential angst. We became Health Canada.

And then what did health promotion mean? It wasn’t just HIV that our office was contending
with, it was issues that had to do with chronic diseases, diabetes and aging and domestic abuse.
And so, it was like – and no one in our office except me really had the handle on HIV. I was kind
of the go-to guy and so I felt alone a lot of the time, very alone in the work I was doing here,
although I was supported by my manager. But as a collective office for health promotion, there
was a lot of internal education that had to be done, because I would have people come into the
office to talk about funding. We would take over the board room and I knew that my colleagues
were a little bewildered as to the flourish of activity in the unaccustomed to the kind of public we
were bringing into the office. And then unfortunately, although we were acting rather
independently as a regional entity of funding organizations, we – the minister did have to sign
off on every penny we would spend, so we would have to make a pitch to the minister’s office
and that would sometimes take time. And as you are aware, the bureaucracy has a life of its own
and as the issues became more complicated, the more signatures that had to be put on the file
before approval. So, we tried to coordinate our solicitation process as tight as we could with the
approval process so that funding could start April 1st.

And then the three big organizations receiving operational funding in the early days was AIDS
Vancouver, AIDS Vancouver Island, and the BC Persons With AIDS Coalition, which had been
the Vancouver [PWA] – which had previous incarnations. And then as the program regularized
across the country, there was pressure on us to open up operational funding, because in the early
days I was fairly protective of these three groups, because they were honestly the bulk of the
work. And what was happening outside of the major urban centres was phenomenal in and of its
own because you would get kitchen table collectives of people impacted by HIV and wanting to
respond in their communities, and I’m talking about Prince George and Nanaimo and in Nelson
and in Kelowna and in Kamloops and in Surrey and Richmond, and on and on and on. And my
sense – it was just my point of view – was people who were directly personally impacted by HIV
in one way or the other – a lot of mothers, a lot of sisters, a lot of lesbians in solidarity, a lot of
closeted men, a lot of men living with HIV, living in fear and secrecy. And often times I would
come home from a site visit – oh my gosh, the last thing these people need is a contribution
agreement from the federal government because it required a lot of bureaucracy and administer
the funds. And what I thought was they just need hug and a support group.

But nonetheless, over time the dust settled, the roots started forming and established practices
became current. A collective sense of purpose evolved across the province with various
incarnations of the Pacific AIDS Network in the early days, much of it assisted by the province
with their newfound cash. And health authorities really weren’t part of the picture yet, because
the politics around health care delivery in BC hadn’t yet been settled. At one point there were
132 heath authorities across the province, and that was brought down to 53 and now we have
seven with the First Nations. So, here I was trying manage myself in this confusing array of
politics, bureaucracy, epidemiology – which was new to me. I’m not a scientist, I am a citizen
scientist. And in the midst of all this I seroconverted – fasten your seatbelts.

BK: That sounds completely overwhelming.





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MC: Yeah, so I just reduced the whole thing… Where do you want to take it from here?

BK: We need to talk about that for sure. Maybe before we do that, you said there were the three
big players in terms of AIDS ASO’s. You were uniquely positioned being above these
organizations, observing what they were doing. How were they responding to the epidemic?
What were they doing?

MC: I thought they were heroic. To backtrack a little bit, I came into this work a bit of an
idealist, because of my experience, academic and otherwise, in Latin America. I had idealized
the role of community endeavors, community mobilization, community development,
community action, whether it be against the church in Latin America… Hence, you have a
popular Catholic Church doing amazing things in total disregard to the Vatican. In fact, a lot of
Brazilian priests had their card taken away because of the radical work they were doing, be it
government, dictatorships, be it the establishment, be it patriarchy, be it capitalism. So, I saw the
birth of ASO’s as – I kind of saw it with a huge amount of hope for humanity because they…
And the AIDS conference in Montreal where they stormed the orthodox status quo and turned
the whole thing around 180, and the Denver Principles were factoring into it. And because I
identified so strongly with the community, I felt oh my gosh I am part of this surge of new
approaches to organizing humanity. So, the reality soon became apparent because people are
people doing the best they can with what they got.
So, back to your question, what were these groups doing. They were doing the best they could,
given the circumstances, and I saw my job as trying to minimize the amount of friction or fuss or
static from the system so that they could just get on with what they needed to do. So, lowering
thresholds for applications processes, being overcompensating when it came to quality of
presentation when it comes to a pitch for funds, recognizing that not everyone is on the same
playing field. It was a collective effort, it wasn’t me unilaterally. Collectively across the country,
there were people like me that were doing the work although for the longest time I was the only
gay man working as an AIDS funder for the federal government. And then when I became
positive, clearly I was the only HIV positive gay man working in this field of endeavor for the
federal government. We devised a range of criteria to judge a proposal based on quality and
merit and chance of successful outcome and partnerships and feasibility, viability. And we would
pump up the score of groups whose proposals perhaps weren’t stellar but had the capacity.
Groups like working in the Downtown Eastside with transgendered community – it was a group
for a period of time called the High Risk Project, and so we funded them to do frontline work
right on Hastings St. doing amazing things. And for the record, it was Sandra Laframboise who
was spearheading that endeavor, and I am aware of her presence to this day. I haven’t crossed
paths with her in over a decade or more.

Then PARC happened, the Pacific AIDS Resource Centre, which was an uncomfortable
arrangement that brought the Positive Women’s Network together with AIDS Vancouver and
PWA. And one interesting thing was Mary Collins was Minister of Health under Kim Campbell,
and Mary Campbell was a local MP from North Vancouver, and she had it in mind to provide
some substantial support to PARC and somehow the number $250,000 just kind of arrived.
There wasn’t – there was a dilemma because through the ACAP funding, we couldn’t fund
infrastructure. We could provide funding to buy real estate, we couldn’t provide funding to buy





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things. We could fund almost everything except research because there were dedicated research
dollars from the federal government that were for research, but we could fund needs assessments
and other kinds of things that were kind of research but didn’t fall within the strict parameters.
And we could put some office equipment under office supplies, so we could be flexible. But with
$250,000 going to PARC, we had to be very creative. So, through countless meetings and
discussions and briefing notes, we settled on paying for an elevator ‘cause there wasn’t an
elevator at 1107 Seymour St. Oh my god, so – but it had to be done through our program and so
it was like a hall of mirrors where at one end you had this intent by the minister and then it was
all kind of funneled through our program and at the other end there was an elevator. So, I was
kind of joking when the building was demolished that we should extract the elevator and put it
on the back of a flatbed truck and park it in Mary Collin’s driveway as a remembrance, a token
of appreciation for the efforts that she went through for AIDS.

BK: That really gives you the sense of bureaucracy involved – that is incredible. The other thing
I was going to ask about – you are also in an extremely unique position in that you got to see
these community responses going on across a lot of different geographical communities. Do you
have anything to say about that? In one sense, I am curious about how the community response
might have been a little different in Vancouver, or alternatively, how it may have resembled
other contexts?

MC: Well, there was the great divide – there was the urban-rural divide for sure. There was any
number of responses popping up from the community here within the Lower Mainland – every
flavour, every stipe, every permutation, every nuance, and that happened across the country. I
remember having endless discussions around the hierarchy of oppressed, which I think has
another name now – identity politics?

BK: Potentially.

MC: But then as soon as you leave the Lower Mainland, discussions were like how many – what
is the critical mass for an ASO? How many do you need along the highway? This is – I guess a
good example was on the Island. Does Campbell River need one, and then Nanaimo, and then
Parksville – I am getting my geography a little mixed up – and then Port Alberni, and on and on?
Are they independent, are they stand alone? Meanwhile, politics were happening on the Island all
by itself, through AVI and consolidation. Another example was in the Kootenays. There was a
stand-alone organization in Cranbrook and one in Nelson – East Kootenays, West Kootenays,
totally independent separate offices, board of directors, separate entities, separate realities,
separate populations, separate programing thrusts, separate epidemics. In the Peace Country,
nothing and further north you go, nothing. How far does Prince George’s reach go? Does it go all
the way up to Atlin, Smithers, to Hazelton? Do each of those communities need something
specific? There was no one formula, there was no cookie cutter approach. Things happened
organically and with a little nudging. There was some behind the scenes assistance provided to
the northwest where you had Smithers, Terrace, and Prince George, and I think we kind of
encouraged a certain amount of consolidation for practical purposes, but we didn’t want to come
off as being heavy-handed and directive of the community’s efforts ‘cause that wasn’t the job we
were in. It was dicey. It was: proceed cautiously, proceed as the way opens, keep an open ear and
open mind and an open heart.





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But gay men were always a matter of concern because once we regularized solicitations and we
had these seven populations identified, prisons were in there. I would look at the stack of
proposals that we would get that would ask for ten times more money than we had to allocate
and where were the gay men? It was surreal. We would get proposals from smaller communities
in rural communities in BC and they didn’t mention the word gay – not at all, not at all, not at all.
I remember once we had to step back, take a deep breath and say all right, we are going to take
away a certain chunk of the available funding, set it aside, and reissue a separate call for
proposals specifically focused on gay men, bi men, Two-Spirited men, MSM, and if you want
the money, it has to be specific. And even that resulted in a disappointing return. So, it kind of
explains why I am such a fan of community based research focused on gay men, and from the
get go, even before HIM [Health Initiative for Men], the work that was being done. AIDS
Vancouver’s Man to Man project, which is what it was called when I started it, and then it
evolved into Gay Way, just down here, and one thing led to another, as you know. It was
banging my head against the wall and anxious calls out to the community. And even before that,
I remember – I don’t want to name the community but I went to this part of the province with the
intention of spending a lot of money. “Here, I’ve got up to $300,000 for you guys if you want to
do something on AIDS.” I went to social service agencies, women’s groups, family associations,
boys’ and girls’ clubs… [holds his nose shakes his head, like there is something smelly]. That
was in the early days. That was when I first started. I thought, oh my god, I can’t give money
away.

BK: It's bizarre. It’s not like gay men had disappeared from the epidemic. They were still being
massively affected by the epidemic, so why was there such reluctance to work with gay men?

MC: To work with AIDS, period. We know the answer now – then it just confused me ‘cause I
lived in a little bubble, I lived in the West End. My dentist, my doctor, my lawyer, my grocer –
everybody. You know, I lived in this little gay world, and I would travel outside my little bubble
and I would say, “I’m not in the West End anymore, am I?” And that’s not true as there was a lot
happening underground. I remember one meeting on the Island – I won’t say which community –
but there were guys there from small places in living rooms and I had – I didn’t even have Power
Point presentations yet, I had flip charts and markers outlining the steps to get money and a
bewildered set of faces glossing over of their eyes, getting blurry, and then breaking for coffee in
the kitchen. And I remember one guy just leaning into me and starting to cry saying he had just
received his diagnosis, and then another. So, that happened on many occasions in other instances
– people from the community would think that money would solve all their problems. I
encountered some desperation and the only way they could articulate it to me as a funder was
“Where is our money, where’s our money? We want our money,” thinking that would solve
transportation issues from rural communities to urban centres where they could get good
healthcare, it would fix the local economy so the people would have jobs so they could put food
on the table for their children. “I don’t know where your money is.” I said that to myself. Oh my
gosh, you are getting me all kind of…

BK: I can understand why. Rural-urban divide is a pretty profound one, obviously. If there isn’t
enough of a group of people that want to do something, then there isn’t enough of an
infrastructure in place to actually fund an organization or form an organization. And then you





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have had a few different snap shots of community responses in urban centres – Toronto, Ottawa,
Vancouver, I guess Edmonton and Calgary. Did anything stand out about Vancouver amidst that
context? I am not thinking of the rural-urban divide – Vancouver as a unique urban context?

MC: Indeed, because I had gotten to know John Gates in Ottawa. I got an appreciation as to what
was happening and because when I worked for Cuso, we were a national organization with a
presence across the country, and because of Ron’s work with social workers across the country, I
remember having a super timely conversation when HIV positive people in Vancouver got to a
point of angst and frustration with AIDS Vancouver and decided to start their own organization.
And I remember Ron and I wondering, “Well wow, what does all this mean?” So, here I had this
idealized notion of ASOs as being the panacea for saving of humanity and oh, well oh… oh my
gosh, that’s happening - oh! That was a Vancouver-specific echo that reached Ottawa and my
ears.

BK: The PWA Coalition when it emerged, it was a bit of a unique development compared to a
lot of other cities, especially because early on there was an element of activism that they were
doing. Protesting the government, but also accessing drugs through channels that weren’t
necessarily legal in the strictest sense of the word, so they were heading off in a more radical
direction.

MC: And through my career in the federal government, it was unique – there was nothing else
like it across the country. And because I was so familiar with community programming, from
coast to coast to coast, whether it be in Cape Breton, or in the Eastern Townships, or Thunder
Bay, or rural Manitoba, certainly the prairies, and even Alberta, there was nothing like it. And so
I felt proud actually of the work being done here by brave individuals. And I remember we were
using the Ottawa Charter for Health to guide our work. We had to have a set of principle to hang
our efforts, and I don’t know if you know the social determinants of health, but one of them is
socioeconomic. So, we would have these spreadsheets – bureaucracies love these templates with
little ticky boxes across a very long landscaped sheet – and across the country, “Which
organization is responding to which determinative health?” And no one was able to put in – oh, I
wish I had the charter with me. Economic well-being – do you have a job, do you have money
coming in, can you pay for shit? And when PWA here made a breakthrough with Schedule C and
lobbied the province to top up disability rates, oh my god – check. And then, it wasn’t just for
people living with HIV because they thought that it applied to a broader range of people with
disabilities, and so a top up, a nutritional top up allowance across the board for people on
disability was made available in BC.

That reminded me of the idealist notion I had of social change being – and social justice being –
fomented by AIDS work, and to this day I think it… I am out of the loop and I have aged out,
and rusted out, and I’m burnt out, but for the longest time, I held that in great esteem – proud
of… I remember going to Ottawa, and in the last days, the ugly days, the Harper days, the mean
cruel homophobic hateful days, where the bureaucracy soured and public health had nothing to
do with the public and was against health – honestly, leave that in – and here I was still trying to
fly the flag. And increasingly I was the only one, because I wasn’t steeped in political culture, I
didn’t know the right things to say, I didn’t have any sage advice, I didn’t have a mentor saying,
“Just calm down. Just do what you can do. Some things just have to be.” There was nobody, so I





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kept – I think they were delighted when I got my layoff notice. I think they thought finally we
got this thorn out of our sides, this person who dares speak truth to power, who speaks the
obvious when everybody in the nationally televised town halls would be [covers ears, eyes,
mouth]. And I was like, “Wait a sec, I have a question…” if I can just sense the whole country
going, Moffatt’s got a question.

BK: Hopefully you kept them accountable to some extent, too, then.

MC: Thankfully, there were smarter people than me in the system, that are there to this day, who
knew the rules of the game. I had never played the game, so I didn’t know there were rules.

BK: There is a lot we can come back to, but we have talked a lot about your professional
involvement in terms of combating the epidemic, but you also said you were living in the West
End. Maybe we can talk more about your personal responses to the epidemic – what you saw
going on in the community, not from your professional perspective, but just maybe as somebody
that was living in the West End?

MC: Gosh, well when I first moved to Vancouver, I didn’t really know anybody except the
people I worked with, and again my professional and personal lives kind of blended. I think
within two weeks of moving here for Cuso, I went to the Lotus Club for PWA and it was fun – it
was fun. People were having fun, dancing and laughing, and there was comedy. I remember
being blown away by this group of people. Again, oh my god, The Bovines – maybe that was the
group out of New York, and they were modelled after – there must be ancient super 8 footage of
these characters who had choreographed dance numbers. And the one I remember, they were
dressed as Pan Am stewardesses with tight fitting suits and hats and wigs and – in fact, they were
The Bovines because later on I heard on Ideas, CBC Ideas, of the daughter of one of these drag
personas who grew up kind of in the midst of the queer community as a little girl. And anyway,
so it turned out that I talked to some of these people and they were square dancers, and I thought
oh my god, this is so fascinating. And it turns out that just up the street from where I lived at St.
John’s United Church there was the square dance club. In 1991, I joined Squares Across the
Border and met a lot of people and met a lot of people who were living with HIV.

Lot of people who died – going to memorials. There is a bench down at Sunset Beach for a
fellow I was fond of who was a square dancer. And in fact, his memorial was held as a square
dance and it was – we had keggers brought in and it was the first time I had seen liquor at a
square dance. So, they had choreographed a special square dance in honour of all the people we
had lost, and when we would go to conventions which would bring people, like 12,000 people,
there would be a wall of badges of dancers who had passed on. When I moved into my building
where I still am now these years later, my neighbour was recently widowed – he had lost his
partner just months before I had moved in. The sight of people walking frailly throughout the
streets… I remember getting really choked up at the airport coming home, and waiting for a taxi
were a couple, and the one fella was very frail, in a wheelchair. And just the haunted look in
people’s eyes and the sadness, the overwhelming grief, the pent-up despair, the huge crowds at
the Candlelight Vigil every year. The tenderness in which that ritual was conducted offered a
tremendous sense of healing balm from the soul. So I mean, these are stories we all have to
share, I’m sure – they are not unique to my perspective. I remember going to this work thing,





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‘cause I – you know, it was both a curse and a blessing, going in on Mondays and looking at the
obituaries and thinking, oh, we will never get a final report for that project. And getting cornered
in the produce department at Safeway on a Saturday morning by an irate community member or
disgruntled board member, and thinking oh my god, call me at the office. And in a way, I kind of
stepped back a little with a protective sense of distance and isolation from the community, which
I guess was a way of self-preservation, but it also resulted in a bit of loneliness because you
know…

BK: One of the big narratives we tie to the epidemic is the idea of the community coming
together and this is something that has a lot of truth to it, but there are a lot of people who did not
find themselves more immersed in the community as a result of the epidemic. We have heard
that from other people as well, that they took steps back as well for various reasons. It is
complicated, I guess.

MC: It is complicated.

BK: I liked hearing you talk about the PWA fundraiser and square dancing, because this is part
of what we miss when we talk about the epidemic is that part of this response was to keep on
living.

MC: That was a topic of conversation for World AIDS Day because I think we had been
approached by an employee group – I think it was CP Air, which existed back in the day, or
Canadian Air it became. And they made a pitch to the World AIDS Day group to host an event at
the Vancouver Art Gallery that would be upbeat, that would have dancing, a DJ, cocktails. And I
remember it was a an awkward discussion – do we have a celebration like that on World AIDS
Day? And I think we nixed the idea because we just didn’t know how it would go over, precisely
for that kind of – you really hit the nail on the head with that one.

BK: There had to be space for a lot of different responses. Grief – the vigils are a great example
of that. Anger started to emerge with other organizations. There also had to be spaces for
excitement and fun. We have had a couple people talk about the Gay Games, which might have
been just before you got here.

MC: Just before. I remember being struck by a friend of mine. We were at the AIDS vigil
together, and you know, all choked up, holding our flowers and candies we would get. And I
think I asked if you want to go out for a coffee, and he said, “I think I am going to go to the
baths.” And I said, “You are going where?” How – in hindsight, now it all makes sense, but at
the time I reacted oddly thinking uh… but… [shrugs]

BK: I don’t know if this question will lead anywhere as it seems to me that you were in an
established relationship before the epidemic really got going, but as you were learning about
HIV/AIDS, were there conscious behaviour changes or was it you were already in a relationship?
You articulated earlier that you weren’t going – you weren’t involved with bath culture before
HIV/AIDS.






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MC: It turned out that just as I initiated my relationship in 1992, I discovered bathroom sex and
in fact didn’t disclose to my partner that this was something I enjoyed until a point in our
relationship where we were having difficulties anyway. And the end was nigh for us and that just
kind of – well, let’s just put it all on the table. So, I did dally enthusiastically and I remember
talking to a nurse here – testing back in those days was awful ‘cause I ended up going to the
BCCDC, in their old building at VGH. It was like this haunted art deco building that was full of
shadows and ghosts and kind of a nurse ratchet kind of vibe. And so, I did test regularly. There
must have been – I could have gone to Bute, I don’t know how I found myself up there. And I
had a really bad habit of eating the cuticles of my fingers to the point of bloody mashes, a mess,
and I remember asking the nurse about the potential for infection through semen dripping over
my sores, and to her credit, she kind of thought about it and said, “Well, you’d likely have to
soak in it.” [laughs] Soak in it was a TV commercial for Palmolive dish washing detergent, so it
spoke to an era. “No, I don’t soak in it, so I think I’m okay.” So, I would go to the bathhouses,
and be filled with all sorts of mixed feelings around seeing visibly ill people there and feeling
like, oh, and really being guarded and denying myself a rich sexual life and a repertoire of sexual
activities… fearful.

I had contracted syphilis in 1982 just before meeting Ron and I think one of the reasons I was so
endeared to him was when I was diagnosed, after we started seeing each other – this was at the
hassle free clinic in Toronto – I guess it had, primary, secondary… it was kind of secondaryish,
so there was no question – treatment right away and your partner too. And so, we both went in
on a Friday for these awful shots in each buttock, and I remember being immobile for three days
in bed with stiffness from head to toe, and Ron – it turned out he was subsequently negative for
syphilis, but we stayed together and flourished as a couple after that. And so, that was a nasty
early experience that put my guard up.

And living with the constant dread of infection until I got infected myself, which was in
hindsight now, I can put the pieces together. I got the diagnosis April 1, 1996, but walking it
back, it was likely in May of 1995, because I did become quite ill with classic seroconversion
illness July 1st weekend of 1995. And that was a whole mish mash of tragedy subsequent to that
because I had been seeing a GP in town and this is where it gets dicey around… because I had
gone for regular testing and I remember getting the requisition for the lab and sticking it in the
shirt pocket and the shirt went through the laundry. And I remember going back to the doctor and
saying I needed a new requisition, and this one I put in my wallet. It was kind of December –
maybe this time of year. I happened to be walking on Burrard, and 777 Burrard, there was lab on
the something floor and I thought I can do it now, so I went up and had the test. That was
December ’95. And then I had been seeing my doctor subsequent to that for all sorts of things,
‘cause I had asthma, and I completely forgot about the test until I had it… I make a little list
before I see my GP – oh my god, I had that test. April 1st, I had an appointment and the
receptionist booked it for the last appointment of the day, which was convenient for me because I
had work. And again, I had my little list of things – I had a nasty 3rd degree burn from spilling
coffee on my arm at work. So, we went through the list and checked my burn and my asthma and
then I was, “Oh, that HIV test I had back in November…” And he said, “Oh, Moffatt, it came
back reactive.” “Just now it came back reactive? Or back then when I had the test?” He said,
“Back when you had the test.” I said, “So, January, February, March – three months? And you
are only telling me now and it was the last item on my list?” So, that was – I mean that





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compounded the anxiety around getting a positive test. And I had not done anything risky which
makes it even stranger, so – and that’s my… I don’t revisit this much because for years it
confounded me and provoked a huge amount of anxiety. Over time I have just…

BK: We absolutely don’t have to go into it in any more detail than you have already.

MC: It’s a mystery. I did smoke at the time, so I put my own story together at the time. I was
dating a positive guy. I knew from the get-go that he was positive, and we conducted ourselves
accordingly. I didn’t feel at risk at all. I knew the safer sex guidelines backwards, forwards, in
both official languages, so – but I did smoke and I did brush my teeth vigorously and I had really
bad gums. So, I’m thinking… I mean what else is there to think? He probably had a huge viral
load – he never came in my mouth, but there was a lot of pre-, so I must have been infected
through the mucus membranes in my mouth. It’s not like I’m ashamed of being a bottom. So, I
didn’t continue seeing that doctor and it turned out that this particular GP was going through his
own shit and offered that up as an excuse, and I said your shit stinks but mine does too and that
doesn’t do anything to change the nature of our relationship in terms of doctor-patient. And then
I kind of put it – there were three strikes: that was the first strike. The second was he wasn’t able
to offer me a viral load test even though in ‘96 I knew they were available. The third – he said,
“Just wait for another four months. We will do another blood work up and we will see where you
numbers stand.” So, I immediately went to a new GP and have been with them ever since, was
immediately given a viral load test, was immediately put on HIV meds, because my initial CD4
test was 180, which made me think, well, maybe I’ve been infected a long time. But no, I’ve
been getting tested, so it’s like whoa. For somebody who is pretty well-informed – confounded
the living daylights out of me… so yeah.

BK: Yeah, that does not make the receiving the news any easier.

MC: No, but I get some satisfaction that it was on April Fool’s Day, and it turns out I’m not the
only one who got their diagnosis on April 1st – it turns out there is a small subset of us that share
that. In fact, I have a friend in Montreal who got his diagnosis on April 1st as well.

BK: Were you – ‘96 is the year we have the cocktail emerging. Were you able to get on effective
medication pretty quickly?

MC: I was actually. Because of my low CD4 count, there was no question. I think at that point,
one of the AIDS-defining conditions was CD4 count of under 200, so yeah, it was within weeks.
So, by the time the conference rolled around in July – and I didn’t even want to go the
conference because I was square dancing at the time and there was a square dance conference at
the time in San Francisco, but my manager said you have to be here for the conference. And that
was the conference, the big conference when Dingwall was our minister, and I thought I really
don’t want to be here at all. And so, I stood and turned my back on my minister in the opening
plenary when he spoke, and my manager was sitting right there – “You can’t…” You aren’t the
boss of me.

BK: You weren’t the only one, I imagine.






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MC: No, I probably wasn’t, but it was dicey going for federal employees going to that
conference. We were read the riot act by upper management, but I had my just desserts because
the community portion of the AIDS conference was happening at UBC beforehand and there
were portions of that I wanted to attend. So, I essentially offered a free shuttle service between
UBC and the main conference venue for dozens and dozens of activists. I just handed out taxi
chits like they were – oh yeah, yeah. So, it was one little thing I can do on behalf of the federal
government.

BK: Thinking about the epidemic as a whole, how do you think the epidemic shaped your
relationship to the community, if it did?

MC: It’s a pretty broad question.

BK: A bit abstract.

MC: A little abstract. I got a lot of support from the organizations I was working with upon my
diagnosis – like unconditional support, like lots of hugs, and opportunities to talk. And I knew
who to talk to ‘cause I knew who was doing what, I knew everybody. So, I initially freely
confided in people I trusted in the community, across the province of BC and found tremendous
amount of gratitude for the good relationships I had established to the point where I could blur
the personal professional boundary and I kind of got what I needed to an extent. I am confounded
that in 2017 we are still having to contend with these issues. Thinking back to the early-‘80s, that
is how many decades now? There is a perpetual low-level drum beat of grief and loss and
sadness. No more fear – I have no more fear anymore. One of the side effects of one nasty
cocktail of ARVs I was on rendered me near death, and it was the D drugs – DDI, D4T – and
they over time very insidiously destroyed my liver to the point where I got one diagnosis from an
endocrinologist – is that like a…?

BK: You are asking the wrong person.

MC: He just wrote – I think I needed something. I don’t know why he wrote it on a prescription
– failure to thrive. And I showed it to my sister and she got quite upset. “That is what they use
for babies when they don’t make it past a year,” and I thought oh my god. I was wracked with
nausea and diarrhea and I continued to work. Foolish or not, there was nobody in my life to
counsel me to say, “You know, have you thought about sick leave? Disability?” I forged on. I
remember going to work and having to know where all the bathrooms were because I would
have torrential diarrhea and my poor little sphincter was like shredded ground beef. I’d lost 20%
of my body weight – I went down to 90 pounds – and my face was shrink-wrapped – the facial
lipoatrophy – and I had a distended belly. And as good as my GP is, and was, we just didn’t
know what was going on, so I had countless tests and specialists’ appointments. They put me on
an IV drip to sedate me and they poked – I had a scope down my stomach and they snipped a bit
out and nothing. And I remember taking the bus to women’s hospital and buying a caseload of
ensure and powdered carnation breakfast to boost my protein intake. I had countless meetings
with dietitians and nutritionists. And one day my GP was away, and I went to Spectrum and saw
another GP, and he took one look at my chart and said, “Stop your antiretrovirals now. Now.”






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So, in hindsight, that was the problem. And the liver is forgiving, and over time I recovered and I
ended up getting facial reconstruction done under a study, and then I supplemented it with
additional filler on my own. And I was on a drug holiday for maybe two years, keeping a close
eye on my CD4 count and viral load. We stopped doing the viral load ‘cause it was pointless – it
was through the stratosphere, so I knew that there did come a point where I would have to start
again. I remember doing this awful therapeutic drug monitoring where they would do draws
every two hours to see how much of the medication was in your blood. But I found a regime, so
all that is water under the bridge. But oh my god, that is a lot of water – holy cow. So, the bridge
– thankfully, I don’t burn bridges. Amazingly, being in this kind of work, working in this
community as a federal agent with the purse, I think I am generally well regarded by my peers
and colleagues. I mean, there were some decisions that were questionable, but I learned from my
mistakes but… And the work did burn me out, but it wasn’t anything that the community did. So,
there is all that. I don’t know how you sum that up in a bullet point.

BK: I think it does speak to the 1996 endpoint being a superficial endpoint because the early
cocktails, even for people that tolerated them, were absolutely awful.

MC: The DDI were tablets like this that I would have to crush in my blender and then mix with
water, and I remember after each dose – and it was twice a day dosing – I would prepare myself
for an hour for an out of body chemical reaction. I just felt like a toxic soup of chemicals. I could
smell it on my skin, I could sense it on my breath, and the feeling of disease, as subsequent to
medicating myself. So, I remember those days, but I also got great care, you know? I remember
at the outset, my new doctor , my current doctor, said that, “You will get to a point where your
drugs will get to be like brushing your teeth,” and that has been a mantra – that has kept me
going. And you know, grinding up those fucking pills – this is not like brushing my teeth. But
now in 2017, I’m grateful for the days that go on end when I don’t even think about HIV. And in
fact, there was a little thing thrown out by Positive Living this past Christmas a year ago where
you could download an app and it would be like a health tracker, so I’m always downloading
everything to see what it is like. And after a couple days, I was like, oh no, this is reminding me.
I can track my own well-being by the way I feel, I don’t need an app for that.

BK: That is another question, how your perspective on HIV has changed looking forward from
‘96 to the present. You have succinctly articulated how that has been for you but is there
anything else you would add? It isn’t something you have to think about anymore.

MC: Indeed, that is the blessing. I have made it this far to come to that point.

BK: Getting to some of these big – these might be too big – the larger scale questions we are
wanting to conclude with, how did the community change as a result of the epidemic? Or did the
community change in any fundamental way? You gave a snapshot of Toronto in ’81. Do you
think the gay community shifted or changed in any way that you can articulate?

MC: Is that hypothetical?

BK: No, how did the epidemic change the community?






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MC: Well, I was young. You know, I was in my twenties when – in 1982, I was twenty-two, so
there was always things to worry about, being gay and growing up gay in the suburbs of Toronto
in the sterile confines of suburbia. So, in a way, personally, I feel like I was predisposed to a
catastrophe because we kind of grow up, or we did then, being ultra-sensitive about the world
and very mindful of how we move through it. Danger was lurking at any unexpected corner as
well as enormous pleasure. And so, you know I have done the reading, I know the history, I
know there was a huge surge of health-related mindfulness around gay health before HIV. The
hassle-free clinic in Toronto is a good example of how we care for ourselves. I remember going
through university as a somewhat sensitive boy and needing to get counselling and I was able to
get exactly what I needed in the gay community then. We kind of had all our feet firmly on the
ground to collectively – to proceed in a forward direction together to confront this.

And so, in a way, my idealization has really borne fruit because we have much to be proud of for
our accomplishments and there are many people alive today because of how the gay community
has worked together and handled all this. And we are on the cusp of all sorts of interesting
things. It is always an interesting story we tell ourselves – the government on the 28th is going to
do its big thing in the House of Commons. You know, the masthead of The Body Politic back in
the day was a quote from a German sociologist from the mid-war years. I think it was “The
liberation of homosexuals will only be achieved by homosexuals themselves,” and that is true –
we are incredibly self-reliant. You know, CBRC got the ball out of the park from the get go with
that caring for each other manual – caring for ourselves, caring for each other – I think was one
of their initial publications. And so, it’s with that kind of mindset and predisposition in life that
we have arrived to where we are now. You are getting an equally ball park answers to…

BK: As would be expected.

MC: And to be continued… it aint over yet.

BK: The resilience of the community stands out as – it isn’t the only things that stands out but it
is one of the takeaways – it has to be. I think fundamentally how we managed to get through a
crisis that deep – whether we came out stronger is another question, but we made it through,
which I think is pretty profound.

MC: I think it is, and I came away from the [Gay Men’s Health] Summit a week ago totally
inspired. If it was one thing I had to – I observed – was the number of young, fresh, keen minds
and souls that are present to move all of us forward. So, it’s like, wow, you know. So, us old
dinosaurs can kind of rest in an easy place knowing the young’uns are on board. And I also am
mindful of the gap that exists, the generational gap, and you know I am confounded as anybody
as to what to do about it. So, I am tickled pink that something like this is happening and I hope it
leads somewhere. I hope you yield good fruit, I hope it bears something profound, because if
there is vulnerability, I think this is it – the generational thing. I mean, there are a lot of
vulnerabilities, but this is one that there isn’t an easy way to approach. Thank you.

BK: Thank you so much. On that note, as somebody who is a long-term survivor, and as
somebody who lived through this period and was heavily involved in the community response to
the epidemic in quite a unique way, do you have any advice to people being newly diagnosed,





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younger gay men that are coming of age now at a time when HIV is still in epidemic proportions
– any advice for that younger generation based on your lived experience? I know these questions
are more abstract, but I think that maybe you have some thoughts.

MC: I don’t know. I was talking with some of the peer coordinators at Positive Living and there
is a job opening, and I thought – I was just kind of thinking out loud about applying for one but
then I immediately said, “I’m not a good fit.” So, somebody asked, “What do you mean?” And I
said, “Well, I could just tell newly diagnosed people to get over it.” Yeah, “That’s not the kind of
approach we would recommend taking with newly diagnosed people,” but I do. I am a bit cynical
and jaded to a certain degree, but on the other… and you asked a very sincere question. And so,
what’s kept me going is an approach that has served me well through all of the ups and downs
and kept me buoyant in the turbulence, and it’s kind of corny and it’s a bit of a cliché, but it is
proceed as the way opens. And I have used it in countless ways and in countless talks and in
countless times. It is a Quaker proverb or adage that you stay mindful and present and aware of
everything, you are able to – and when ways open, you proceed. It isn’t a passive stance of just
waiting, it is being mindful and anticipating openings so that when they make themselves clear,
you take advantage of them. And then ultimately, we are all in this together – that is another
cliché – and there is plenty of support. And I can offer a testimonial to the quality of the support.
And it is changing and it is precarious right now – the lay of the land is shifting for sure and I
don’t necessarily have faith in… I don’t know if there is anybody steering the direction right
now. It feels like something has been botched, but nonetheless, there is that and then there is life.
And I think, you know, it’s take care of yourself and take care of each other.

BK: That is always good advice. And relatedly, any advice for healthcare providers in the
present or for health researchers as well? We are dealing with an epidemic that looks very
different now, but are there things that you could see that could be dealt with in a better way or
that we could be doing better? Well, not we, but healthcare providers and health researchers?

MC: Uh, well, it is written up in the literature – collaborating, cross interdisciplinary approaches
to care, patient-centred care. And I would just inject a huge dosage of humility into everybody’s
practice. Sometimes ego and arrogance can rear up and is off putting.

BK: When I think about these epidemiological approaches to the epidemic, TasP comes to mind.
I wonder if one of the things we lose is the patient-centred focus. By talking about populations,
do we lose the individual sometimes? Just a random thought.

MC: It’s a tough one. I was recently talking with someone about the blood ban and I am one to
lay all my cards on the table – I don’t have a very fancy deck. As a positive man, it is hard for
me to get “rah rah rah!” about the blood ban. Just saying it, I said… it’s the same a PrEP.
Intellectually, I can connect the dots and I know many people, many people in my circle who -
for which it is a key concern, and on paper I can sign my name, but it doesn’t really resonate
when I close my eyes and go into that place deep… It’s like, PrEP is irrelevant to me and being
undetectable, it’s even less of an issue, so there. And yeah, so just to be mindful that not
everybody is on the same page or that we do speak from a variety of perspectives. That, I guess –
the humility and keeping present and keeping mindful of others, keeping an open mind and an
open heart, but keep on going.





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BK: I think I’m out of specific questions – like, I think we have kind of touched on all of these
points. Is there anything that you were expecting that we would talk about that we haven’t had a
chance to talk about?

MC: Oh, probably. It will come to me at 2 am. We can take a couple of minutes. I am parched,
the well is dry. There are plenty of anecdotes, both funny and sad, but I think I have had my say.

BK: Ok, well I am going to turn this off then. Thank you so much.

MC: You’re welcome.