Casey House Celebrates 25 Years!!

An xtra special
Supplement

years of
Casey
House
Casey House opened its doors on March 1, 1988.
At the time, it was a revolutionary concept, and many people
were involved in its creation and the work done there. HIV/
AIDS is still with us, but the face of the disease has changed.
Casey House is changing, too, in order to serve its clients in
the best, most compassionate way possible. One in 120 adults
in Toronto are HIV-positive, and Casey House is building
a new facility to more than double the care they are able to
provide. A major new building is underway that incorporates
the Grey Lady, the soon-to-be-lovingly-restored mansion at
571 Jarvis St. The addition of new programs will change, once
again, the way healthcare is delivered to those who need it.
Fifteen people who have been instrumental in Casey
House’s evolution graciously gave of their time to talk about
what Casey House means, to describe the hardships and
triumphs they’ve been witness to, and to offer a glimpse
into the future. On the hospice’s 25th anniversary, this is
a snapshot of what Casey House is and will be. •

TORONTO’S
GAY & LESBIAN
NEWS

1 IN 120 ADULTS IN TORONTO

Every life saved, every isolation ended, IS HIV POSITIVE

every hope for the future rediscovered... Let’s face the future together
Every miraculous story that happens About Casey House More Torontonians are living with HIV/
at Casey House is a testament not only Founded in 1988, Casey House was the AIDS than ever before. The $10 million
to our founders’ brave and passionate first freestanding HIV/AIDS facility in Rebuilding Lives Capital Campaign
foresight, but also to the commitment Canada. will allow us to build a world-class new
and wisdom of our donors, volunteers home for Casey House and a bold new
and staff. Today a specialty HIV/AIDS hospital with face for HIV/AIDS care in Toronto.
community programming, Casey House
We continue to be honoured by a provides exceptional care, support and This new and prominent presence on
quarter century of our community’s clinical expertise: Jarvis Street will firmly establish Casey
enduring support. Through your House in the consciousness of the city,
generosity, you’re bringing hope and • Through the Inpatient Program, and ensure it stands alongside the
healing into the lives of hundreds of located at 9 Huntley Street cultural, political, academic and other
people living with HIV/AIDS who rely • In the familiar comfort of people’s health care institutions that together
on Casey House for support every day homes, through our Home Care make this city great.
- our friends, our partners, our sons Program
and daughters, our neighbours. • For some of our city’s most Help build the building
that Rebuilds Lives.
Please continue to support marginalized people, through our
Outreach Program and community
excellent care for people living
partnerships
with HIV/AIDS in our community,
by making a donation today at
www.caseyhouse.com. Together,
we’re giving compassion a home.

Read more about the past, present and
future of compassionate HIV/AIDS care
at Casey House, and make your gift today:

www.caseyhouse.com

2 25 years of Casey House: An xtra special Supplement

Stephanie
Karapita
Chief executive officer

The very first patient came 25 years ago.
He arrived from the hospital, brought here
by ambulance attendants who were fully
masked, gowned and gloved.
They brought him through the front door,
and the receptionist came up and gave him
a hug, a kiss on the cheek and said, “I think
you’re really going to like it here.” Since then
no emergency personnel have been gowned
or masked when they entered Casey House.
The new building represents an impor- House, Prisoners with HIV/AIDS Sup-
tant step for HIV and the gay commu- port Action Network (PASAN), 2-Spir-
nity. It’s also an important milestone in ited People of the First Nations, the
Toronto architecture — and so needed Toronto People with AIDS Foundation,
by our clients. The disease has changed. the AIDS Committee of Toronto and
Only about 15 percent is palliative care St Michael’s are critical to address the
now. We can play a very important role complex bio-psychosocial issues faced
in keeping people with HIV/AIDS as by our clients. These organizations,
healthy as possible. For many people, together with our clients, are involved
Casey House means loss. It’s hard for in the planning of the new building and
many people to be here. We are reach- the new day health program.
ing out to patients outside of the walls, So many people help in so many ways.
and the more who get to experience, Karen de Prinse, who designs the pro-
the more who are apt to come in. We’re gram, is a nurse who brings enormous
creating a new model. Expanding our compassion and skill. She has a mas-
beloved inpatient program, home care ter’s in nursing, specializing in mental
and outreach. We’re adding a day health health. People who are sick are afraid,
program, a pharmacist, more massage may have had bad experiences. She un-
therapy and recreational programs derstands and has shown tremendous
designed by professionals leadership.
but delivered by volun- Without Mark Bonham
teers. Good nutrition is a
Crying is just we wouldn’t be here. His
big part of good health, so
part of the gift in 2000 enabled us to people. It’s the right thing to stand back hard figuring out a way, to be blunt, for Above, the present home of
we’re adding a hot midday place — how buy the mansion at 571 Jar- and remember. There is a tradition of a him to live. Eventually, he went home. Casey House at 9 Huntley St.
meal. All work in-house can you not? vis Street. He told me he quilt for every year we’ve been open. Ev- I was driving home one day and stopped On the previous spread, a scene
will stop to create a sense There’s such was very excited to be part eryone who died that year gets a square at a light and he walked by. A year before from the 2007 edition of DQ, one
of community and for the touching stories of Casey House. And par- or at least their initials or a blank square. I thought he wouldn’t last for long, and of Casey House’s most popular
care workers to assess all the time. ticularly June Callwood’s Around 10 volunteers meet every Satur- here he was living his life like we all fundraisers.
the clients. And the cur- ♥ passion for HIV and the day at Casey House. The one from 1988 want to. I started to cry. Crying is just
rent building just isn’t gay community. And al- has so many names that it puddles on part of the place — how can you not?
big enough; the inpatient rooms don’t ways the staff and volunteers. There are the floor where it hangs. They are lasting There’s such touching stories, such
match current standards. We’ll allow about 60 in healthcare and many more tributes to the people who we cared for touching stories all the time.
people to move between the programs in events and fundraising. And we’re and who died in our care. I’m still struck when people see the
according to their needs. always looking for more. Two years ago, I came back from a new building design and say, “It’s beau-
Both community and clinical partner- We’re honouring the 25th, not cel- couple of days off. I saw a very sick man tiful.” It is. It’s not two soldiers side by
ships have been at the centre of Casey ebrating. Casey House is an important on our porch. I thought, “He won’t be side; they’re embracing. It’s all guided
House’s evolution in our approach to part of the HIV healthcare community, with us for long.” But I kept seeing him by the vision and compassion of our
care. Strong relationships with Fife and it’s important to remember all those in the hallways. Our team worked so founders.

25 years of Casey House: An xtra special Supplement 3

25 years of Casey House:
A Timeline 1982
Comité SIDA du Québec, the first AIDS
organization in Canada, forms in Montreal.

Sept–Oct 1981
Canadian media outlets begin to report March 1982 July 1983 1984
the emergence of a new disease, The first report of a diagnosis The AIDS Committee There are 147 reported
referred to as “the gay cancer.” of AIDS in Canada. of Toronto is formed. AIDS cases in Canada.

1981 1982 1983 1984

Dr Linda Rapson full of the most colourful, wonderful,
outrageous characters.
Founding There was no blueprint, no guide-
volunteer,
member of book. We were trying to make decisions
the quality about what’s palliative. When you gut a
committee, long-
time volunteer place, do you put oxygen in a wall like You could never
a hospital? Is that something you do? say no to June.
June Callwood’s idea Does it prolong the dying or bring com- We called her the
came from our experience with Margaret fort? We decided against it. I went in Velvet Steamroller.
Frazer, who died of pancreatic cancer in one day and there were all these plastic Pearse Murray
June 1985. June had a gathering of the tubes snaking around and machines on ♥
team who had cared for Margaret and the floor. I thought, “We blew that one.”
announced that we should start a hos- June was insistent on a complemen-
pice for AIDS. I remember laughing — it tary therapies committee: chiropractic,
was so June. There were about a dozen homeopathic, massage . . . That was
proposals before the government for headed by Bill Barrington. My special-
hospices, mainly for people ty is in acupuncture and
dying of cancer. But June One long chronic pain management.
knew that an AIDS hospice weekend we If someone was in Casey
was needed because of the had five deaths. House, we could have a
way people were treated.
The average life process in place so that was
We were hearing stories
of people not getting their
expectancy was an acceptable partmassage
ment. We had a
of treat-

food trays, being aban- nine months. therapist on staff. At that
doned. Hospitals were hav- Dr Linda Rapson point people elsewhere
ing a hard time coping, but ♥ wouldn’t touch a person
the government at the time saw hospices with AIDS. We made sure the nurses
as an add-on, not a way to save money. were trained in therapeutic touch. Acu-
So June set out to do what she did puncture was funded through dona-
really well. She pulled together a group tions. Pearse Murray found donations
of people with various abilities and for all the televisions.
backgrounds. The first thing she did One long weekend we had five deaths.
was to start sending the government The average life expectancy was nine
copies of the minutes. She kept the months. Now we go long periods with-
minutes herself. She said, “Then they out anyone dying. It’s now only 15 per-
have to open a file and then you be- cent palliative. We thought 10 years ago
come a reality.” She asked me to chair that AIDS would be curable; we could
the health advisory committee — in turn it into a hospice for something else.
other words, to set it up. I held off. My Everything has changed, but there’s
kids were young, but I got drawn into still a need for what Casey House does.
it up to my eyeballs. We had to have a
hospital involved, and we wound up Activist June Callwood
working with St Michael’s. June, a fallen
Catholic, kept saying, “I can’t believe
Pearse Murray was instrumental in
founding Casey House.
it’s a Catholic hospital.” They turned long-time
Courtesy of Casey House
volunteer,
out to be wonderful; we had a great fundraiser
relationship. St Mike’s was founded by
sisters who came from France to tend There was such a roller. There were some great women As a gay man I found it strange that decorated when the renovations were
to those dying from a typhoid outbreak. need; so many people involved, but gay men like myself were St Michael’s was involved. There was a done. There were people on the board
There is a small graveyard at St Clair were dying. I was in- involved because so many of our friends nun, of all things, on the board. But it who were savvy enough to approach
and Yonge where the sisters who died volved with ACT and went to a meeting were dying and needed a place to go. was such an incredible staff. Everyone corporations. The people in the busi-
are buried. And St Mike’s has always at the National Ballet School where they June had been on a care team, where wanted to be there. It was a very excit- ness community might not have been
looked after street people. They said were trying to get Casey House off the friends come together to support some- ing time; we felt like we were doing out, but they got involved. We’d go any-
it was like coming back to their roots ground. Everyone was coming together. one who is dying, and that’s how the something. There was such a stigma, but where to get money. Liz Taylor made a
to be part of Casey House. What was People knew other people and were able idea came about. All the gay men were Casey House was a tangible building. personal donation. She spent a whole
disquieting was the church’s attitude to draw others in. But June Callwood banding together to help those who were It stood there and people knew about afternoon with the guys. She went into
to homosexuality. We had to get them was the focus. You could never say no sicker. June thought there was a need it. We all wanted to do something. All each room and spent 20 to 25 minutes
past that. In the early days, the place was to June. We called her the Velvet Steam- and pulled us all together. the interior designers got involved and with each guy.


Jan 1987 Feb–March 1987 Feb 1988
The Ministry of Health agrees to fund The first DQ event is held, raising $38,000, A team of 17 nurses is hired and trained. Included
$1 million for the purchase of the building at almost precisely the outstanding amount in their training are innovative and ground-
9 Huntley St, provided that Casey House can required to purchase 9 Huntley St. breaking standards of care pertaining to palliative
Sept 29, 1985 raise the remaining $500,000. The province support and infection control for AIDS.
The inaugural meeting of the also requires that Casey House be affiliated March 1987
“AIDS hospice steering committee” is Less than six months after incorporation, the fledgling March 1, 1988
with St Michael’s Hospital and that the
held to plan the first stand-alone AIDS volunteer committee has met its $500,000 goal, thanks One year after purchasing the property, Casey
budget be limited to $1 million annually.
hospice in Canada. Representatives to gifts from individuals, as well as generous gifts from House opens with a ribbon-cutting ceremony.
from the AIDS Committee of Toronto Oct 1986 Johanna Metcalf, a birthday tribute event for June March 9, 1988
and Holy Trinity Church attend, as Casey House Hospice is incorporated Callwood and the first DQ show. The property at 9 Huntley The first client arrives by ambulance and is
does June Callwood. and registered as a charity. St is purchased and renovations begin. admitted with a hug.

1985 1986 1987 1988 1989

was what we are as a community. I had without guaranteed funds. We were still
a partner die in a California hospital. At dealing with stigma, with parents who
9am, I asked the doctor for morphine would not visit or touch their children.
to calm him; he didn’t get it until 5pm. Then there was the visit from Princess
The doctor was afraid of getting sued. Diana. Here she was, talking, hugging,
Morphine slows the heart and allows no gloves, no formality. Diana got Casey
for a comfortable end. House a lot of attention. It helped a lot
There was so much fear: “It can’t hap- in getting corporate sponsors: banks,
pen to me”; “I’m okay because I don’t MAC, alcohol and beer, and always
have anal sex.” I didn’t even the gay community. And I
know I was HIV-negative And I vowed, if vowed, if that princess can
for many years — I was that princess can do it, this queen should be
afraid to be tested. You just do it, this queen able to.
assumed that everyone was
positive. And if you didn’t
should be able to. cility has lots medical fa-
Any kind of
of govern-
see someone for a while . . . Richard Silver ment stipulations, certain
“Thank god it’s not me.” My ♥ standards that have to be
way of dealing with it was, I’m going to met. With a not-purpose-built building
pick up and do what I can. I started as there are difficulties. The new build-
a volunteer, handwriting receipts. In ing will have bathrooms in each room,
those days we used a pen and paper to privacy; the new addition will allow for
send receipts to people who had given a day health program, new therapies.
donations. I had a bit of a talent for ask- We’re still seeing infections; it’s not
ing people for money, so I got involved over. In this cocktail era, even though
in fundraising. And eventually, I became people are living, there is still a need for
the president of the board. respite, for care. We thought we’d do one
The first year of Art with Heart came or two Art with Hearts, but we’re still
about because Casey House was looking doing them because there’s still a need.
into doing home hospice care, and the
The logo of Casey House is a heart. coach house across the street, the Yaneff
The building had been a rundown room-
ing house, a dreadful place. It was right
Gallery, came available. I was out with a
friend, Paul Conway, who is an art dealer
Michael Oscars
on the track. We got a guard dog, Chel- and consultant. He wanted to help Casey DQ producer
and director
sea, because there were lots of guys House, and we had a Judy and Mickey
floating around outside because it was moment: “Let’s do an art auction.” La Cage aux Folles had
a place to pick up. During the renova- We created a team of judges, and the been through town,
tions the cleaners were cleaning a piece painters set a minimum that could go to and with Donald Mar-
of stained glass. They discovered the Casey House or not. It was so successful tin we did Starry Night,
heart. We were in the right place. It because the art was adjudicated, not just a celebrity fundraiser for this new thing
became the logo. what the artists wanted to get off their AIDS. We knew it was coming, we knew
It was something that needed to be walls. It was important to have Paul the stigma, we knew it would hit here.
done. We were there and we all pitched in. involved. I would have taken anything We couldn’t get a lot of sponsors, and
No matter how little we did, it all helped. that was donated, but that made it a real while it was a spectacular night — real
event. The first Art with Heart was held estate agents, most of them were gay,
in the parking lot of the coach house. were the saviours buying tables — we
Richard Silver I don’t think we’d even closed on the only netted $20,000. It was the equivalent
building yet. People could see the art of the Grail. It was the seed money for
former chair of inside the gallery and then the auction ACT. June Callwood had been a special
Art with Heart,
long-time was in a big tent. We raised $70,000, and guest, and she was talking about opening
volunteer that paid for a lot of renovations. a hospice.
I had a lot of survivor Casey House was a fascinating project Sacha MacKenzie was moved by all
guilt. I was losing a lot to be working on because there were no this and said, “We need a big event.
of friends. Very early models. It was hard to get visibility. The The drag community should put on a
on a friend of mine was in the hospital, gay community was behind it from the big show.” He kept pestering me, and it
an isolation unit; you had to wear a beginning, but we had to get corporate gathered steam. The first show we had
Top, Princess Diana meets Casey House resident Stephen Pugsley during gown, gloves and mask. Then when I and straight. It was set up with foun- no idea. It’s like herding cats with drag
her 1991 visit. Above, Casey House marchers at Toronto Pride in 1988. saw Casey House with people surround- dation dollars, not government, and queens. Sasha made a big sign that hung
Courtesy of Casey House ed by love and family, I thought that that it’s very scary to commit to a program over the rehearsal room door, saying,


1992
The Casey House medical team makes presentations
Oct 21, 1991 throughout Canada and at international conferences, describing
1989
Diana, Princess of Wales, visits their innovative work in hospice care and AIDS treatment.
An estimated 30,000–50,000 Canadians are infected with HIV.
Casey House, spending time
March 1, 1989 with each resident. The event is April 1992
In its first year, Casey House admits 93 residents broadcast worldwide and does A French television documentary
and records 74 deaths.With the need for Casey much to combat the myth that AIDS about Casey House airs, garnering
House evident, the Ministry of Health more than can be spread by casual contact. international acclaim for the
doubles the operating grant, to $2.3 million annually. pioneering work done there.

1989 1990 1991 1992

“Check your egos at the door.” They were guy who could not have been cuter or
great kids. Sadly, most of them are gone. butcher who showed up in a wig and
David Clark we needed. We’d do bar shows ahead
in order to promote. Woody’s would
performer’s health. So I watched the
big production number; it was so com-
In 1988 we celebrated my birthday, and makeup. I didn’t recognize him. He said, (aka Candi Barr) give us three or four hundred dollars, plicated. Then Michael said, “David,
they sang “Happy Birthday” onstage. “I’m the props guy. I was thinking of DQ performer, and it all went to pay for costumes, you’re on.” I was sweating bullets, but
Ninety percent of them are dead now. getting in touch with my feminine side.” Long-time including the tips. Every night of the I got through it. It was a smug moment
Casey House was their insurance. We had one guy — huge, six-foot-five, volunteer run a different bar would host a party but very sad.
I think June thought we were hav- big strapping and good-looking — who I saw the first two DQs with great food, cocktails and a social The Michael Oscars years were all
ing an ice cream social or something. showed up in drag to be an usher. And and loved them. My experience. It was a passion; everyone about cabaret. You never knew what
When they found out it was he was straight. He said, friend Bunni LeBlanc gave 100 percent. There is nothing like you’d see: cloggers, comedy, the ROTC . . .
drag queens, they kept us at “If these guys can do it, I said, “Let’s get in- the adrenaline we felt when the audi- Graham Maxwell, who did the last five,
arm’s length. We were too Every show we can do it.” It was all done volved.” I’d puttered around with drag, ence leapt to their feet. It was always wrote stories and had themes. There
freaky to associate with the did we lost people. in a wonderful spirit and so I auditioned and it was such a buzz. emotional on closing night, when all was a loose script, but we all had input.
cause. The first dress re- So much beauty it wasn’t hokey. We did 10 shows in 20 years and raised the Casey House executives came. It Hello: a show full of drag queens without
hearsal was for those with and talent gone. DQ was grassroots in a million dollars. As a gay man, I never was very black-tie, and we presented them having a say?
AIDS. The next night there David Clark the community, and now felt that I fit into the community. But a cheque and saw how much money It may have been small potatoes, but
was a lineup around the ♥ Casey House has outgrown my friends were dropping like flies, and we’d made over two weeks. it was important potatoes. The $38,000
block, and we sold out the the gay community. We I felt like I had to do something. It was Every show we did we lost people. needed to open the doors came from
rest of the run. We raised $38,000, which were under attack, we were in a war. Not like a drug, and suddenly I had a whole I look at the programs and — Danny DQ just at the right time. As much as I
we mailed to the house. Unknown to us just from the disease itself, but also from new family of friends. Love, Jackie Loren, Rusty Ryan — was helping my community, I also grew
there was a bridge financing problem to the ignorance around the disease, the It was a huge commitment. The show they’re all gone. So much beauty and as a person, as a performer. I hated to
the tune of $30,000. Literally, if it wasn’t stigmatization. It was awful. There were happened in April or May, but the talent gone. It just wouldn’t end. One see it end. I hope there’s another one
extended they wouldn’t have gotten years when the Proud Lives section in auditions were the second week in show, I had some small bits, and Mi- someday, and when there is, this wig
the house. The cavalry rode in in the Xtra was pages long. And we knew ev- January. We rehearsed Wednesdays chael Oscars was worried about one is open.
form of drag queens and Canada Post. eryone in there. The house worked its from six to nine and Saturday all day.
I was just the director, but June said magic; I was able to introduce the house Plus, the volunteers making costumes
casually, “You know, darling, the house to a lot of people who were captivated by and headpieces — it was an army of
will need an elevator,” and so was born it. I’ve always hoped that at some point people. We had a bit of a budget, but we
DQ: The Sequin. I wound up doing five there’ll be no need for it. had to beg, borrow and steal whatever
shows and was on the board and chair
of fundraising.
The template was to put on all your Below, a performer preparing for DQ 1997. Right, a rehearsal for DQ 2007:
favourite numbers, keep it light, keep Wizard of Oz. Top middle, a gaggle of “usherettes” volunteering at DQ 2005.
it silly — all of us were tired; we didn’t
want to hear the word AIDS — and hope
people would show up. And it had to
have proper lighting and sound. The
last thing I wanted to hear was, “Well, it
was for a good cause.” It was a bonding
experience. It raised the consciousness
of those not affected yet.
My favourite story was when some-
one got well or went into remission. We
were stumped. What do we do? They’d
given up their apartment and sold ev-
erything; there was nowhere for them
to go. So Casey House started the home
hospice program. Thirteen was all they
could accommodate.
In ’95, everything changed with the
cocktail. I was exhausted, profession-
ally and personally. I had lost so many
people — pretty well half of my best
friends, kids in the shows, particularly
— and I looked at the house as a bit of
a black pit. There were some very sad
times, but you only remember the good.
The show must go on. And there were
delicious moments. There was a props


1993
By the fifth anniversary, deaths remain
March 1995 July 1996
consistent at around 80 percent of admissions.
The seventh annual DQ event is held, At the International AIDS
AZT remains the primary treatment.
raising $120,000; it’s the largest Conference in Vancouver,
Chaired by Richard Silver, the first Art with June 1993 single fundraising event in the a new class of drugs, called
Heart event is held, in the parking lot next Casey House doubles its patient load by introducing the home history of Casey House. The cause is “highly active antiretroviral
to Casey House. Other important annual hospice program, funded entirely by donors, which provides deeply personal: by this year, more therapy,” is introduced as
fundraising events at the time are Laughing in-home palliative nursing care. Donors also fund a respite bed than 20 percent of DQ cast the standard of care. It is a
Matters and Message in a Bottle. at the hospice. Throughout 1993, 202 people are cared for at the members have died, many at vast improvement over past
hospice and in their homes; 157 die. Casey House. treatments but is not a cure.

1993 1994 1995 1996 1997

Brian MacDonald aged because it seemed to not be com- Message in a Bottle — raising funds but
ing together. June Callwood always in a nice, fun way. Nothing happens in
DQ chair somehow knew and would appear out January/February and it’s the middle of
I was on the board of the blue and do one of her patented winter, so there’s snow — so SnowBall.
when they talked inspirational speeches. It was a need to do something new.
about bringing DQ Being part of DQ was addictive. Ask The first SnowBall wasn’t perfect — it
back after a hiatus of anyone who was onstage. I always had frigging snowed like crazy, it was so
about six years. I’m a a back line of chorus part. All the work appropriate — but we had committed to
technology geek, so I volunteered to be was worth it for those few having everything donated
the webmaster. I wound up chairing and moments. There was al- and zero expenses. And
organizing, but it was a true team effort, ways a lot of laughter. We The social how do you keep it upbeat?
whether it was a volunteer cutting up did it all those years in a conscience that You make sure the mes-
sandwiches on a Saturday rehearsal day row and hit the $1 million these people had: sage is going out at other
or a front-row person in the cast. Each mark, and everyone was “Nothing will times — the statistics, the
person was important. We always found exhausted. It was such a stop us, let’s get reality — but at the event,
something for everyone who came out huge commitment that we this done.” It was it’s a celebration, a group of
to volunteer. For every single person decided to let it have a nap. pioneering. goodhearted, kind people
onstage there were three behind the But if there is some inter- Nik Manojlovich giving.
scenes, making the costumes, driving est from the community, ♥ A friend of ours, a the-
around, soliciting donations. if I hear a few people talk- atre designer, came back
The span of rehearsal was a long time, ing over drinks, saying, “It’s time for from the UK and got sick. I was asked
and there was always a point where another DQ . . .” Well, they tell another to be on his critical-care team. I’d never
everyone would be down or discour- and that’s how it spreads. It was the done that before. A group of friends and
highlight of my time in Toronto. families working every day. I was mak-
ing meals and reading to him. It was
eye opening. Casey House is a home;
Nik Manojlovich you can’t help but feel like family with
the people who work there. And now
former board it’s evolving from a building into an
member, former
chair of the outreach program. It’s pretty amazing
foundation and when you consider how that property
chair of the first
SnowBall came about — the kindness of Mark
fundraiser Bonham to donate the money to buy the
We needed to figure Grey Lady. Who knew that Casey House
out how to raise funds. I’ve worked with would grow up to become such a safe,
a lot of charities, but this is a different wonderful place for so many people.
setup: a hospice board and a foundation Every time I drive by, I check to see
board. The hospice board says, “We if the candle is lit. On the 10th anni-
need a ramp, a bed,” and the foundation versary, we lit it for everyone, and it
says, “We’ll raise the money.” You really was a tough gig. There used to be a sign
want to make it work, as much funds as on Huntley Street saying “Dead End.”
possible because it’s so necessary. They June would not accept that and would
said, “We need an expert in events.” I not stop. She was relentless with the
am an event planner, and I had a meet- city. Now it reads “No Thoroughfare.”
ing and agreed to come on for the 10th
anniversary. They said, “We’ll make it
easy.” Then I got a handwritten note
in the mail from June Callwood and
Tommy Smythe
began a wonderful relationship with a co-chair of
SnowBall, Long-
wonderful woman. You fall in love with time Volunteer
the place and you’re in. The social con-
science that these people had: “Nothing A mentor and friend
will stop us, let’s get this done.” It was of mine, when quite
pioneering. Amazing that after all these ill, had a stay at Casey
years it is still a vital help. House. When Casey House was being
Casey House has a history of great renovated, the money was spent on
stories — the drag queens with the creating the building and facility. They
first DQ; Salah Bachir, who did the first depended on the design community for


1997
The home-hospice care load has
grown to 33 people treated on any
given day. For the first time, HIV/AIDS 1999
is being described as a “chronic disease” Casey House increases the capacity of
if a patient receives the new treatments and its donor-funded home hospice program
does not develop complications. to 100 people cared for each day.

1997 1998 1999 2000

vision. It is a gaycentric industry. How provides the services the new Casey my radar. I attended DQ, and in 2002
to make a home? Look at our clients House will provide. A few throw pillows I volunteered with DQ and then with
and their needs and provide the most or a complete space — I’m glad to offer SnowBall and Art with Heart. DQ re-
practical and beautiful environment. what I’ve learned. Injecting beauty into hearsed here at the church, for the Las
Many of the things they did we’d do now, industrial spaces is tough. It’s important Vegas–themed one. It was magic, like
but my friend decided the furniture was to provide a comforting environment a Disney factory. And then they did the
getting dated. “When I get out of here for someone going through the most Wizard of Oz–themed one, and I was an
we need to redecorate these interiors,” difficult time in their lives. Never un- Oz fanatic going way back to even before
he said. We knew he wasn’t getting out. derestimate the value of comfort. It I knew I was a gay man.
I contacted Casey House’s CEO, can’t be serious, not sombre. If the job DQ began as such a grassroots event,
Stephanie Karapita, about furthering his is done well — injected with a bit of a Mickey-and-Judy let’s-put-on-a-show,
agenda and was told, “Not right now.” Of fun, certainly beauty, and in rare cases but they made the down payment for
course, I soon found out it was because wonder, if not cheekiness. Casey House the building. When DQ started winding
she was busy working behind the scenes is a serious place but doesn’t take on a down — well actually, it went out big —
on the new building. I was invited to join patina of sadness. A safe, loving place to the feeling in the air was, “Let’s create
the foundation committee, an invitation provide everything for care. another grassroots event.” Something
to help SnowBall, to help Casey House This anniversary we wanted to have PWYC so all members of the community
compete in the world of event planning SnowBall as close to home as possible. can come. And why not have it here?
and management. It needed to be rein- So we’re at the Mattamy Centre, dinner The church will donate the space; it’s a
vented and updated to keep generating on centre ice, the drama of the big dome, central location by two subways. And I
funds for daily operations. back in the neighbour- liked the sound of“at the Met.” So Voices
Events are now big busi- I grew up at a hood. The name Chroma of Hope was born. The first year we had
ness. No one does anything Molly Johnson and community choirs.
for nothing anymore, but
time when service is a direct reference toref-
design community, a
the
On World AIDS Day. What are the ap-
because Casey House is to community erence to the colours we propriate musical choices? We didn’t
such a special place, in the was important; work with, the rainbow, want it to be sombre — “Let’s be upbeat”
end much does wind up there were drag winter into spring, the re- — so we opened with Rachmaninoff.
being donated. shows to raise naissance of Casey House, The first year was people remem-
I came out at 18 in 1988, enough money where our community has bering the story of Casey House. It
when Casey House opened for funerals. been. It’s a celebration of was bittersweet; bitter with the sweet
its doors. My entire life Tommy Smythe the achievement of com- somewhat elusive. The second year
centred around the Vil- ♥ munity in supporting was more celebration. We had clients
lage. I finally got my gay brothers and sisters with who had been to Casey House. Over the
family together and most of them died HIV/AIDS. Molly Johnson, a staunch, years we added the Jarvis Street school
in five years. Everything was coloured stalwart supporter, is providing a com- choir, the St Michael’s junior choir, the
by the holocaust happening in the Vil- ing-home element as well. Back to the Velvet Curtain, Dr Draw . . . We had the
lage. I grew up at a time when service to neighbourhood and the supporters Jarvis Collegiate choir the year of the
community was important; there were from the beginning. Next year will be Glee-inspired slushy incidents. A school
drag shows to raise enough money for back-to-basics. SnowBall is a unique choir like Jarvis is a United Nations. The
funerals. June Callwood said that the two experience every year; the template is parents come and they get the message.
principle values are service and kindness. to not have a template. We’re moving A message that Caribbean, South Asian
She spoke at my high school on recogniz- around like we’re wanted by the law. and Muslim parents might not usually
ing kindness in everyday life. It changed hear. It’s the education of youth and par-
the way I saw the everyday world. So ents. The voice of HIV/AIDS is now all
Casey House is a natural choice.
I’ve been in lots of palliative-care Reverend Dr John walks of life. The racial tension within
the gay and lesbian community is in
environments — the most successful
are where a comfortable environment
Joseph Mastandrea the HIV/AIDS community. Why do we
need an HIV group for every ethnicity?
meets the strength and spirit of the co-chair of Public events like this help. How can
Voices of Hope
staff. How to retain June Callwood’s fundraiser, long- we help each other? We have the AIDS
intentions in the new building? Take time volunteer quilts on display. It takes many hands
that very Victorian environment, those When I was ordained to make a difference.
little rabbit warrens that provide cozi- in 1999, I attended a People are dressed casually; it’s come
ness and maintain it in a new building? seminar on pastoral as you are. Enter, listen to the stories
It has to be a welcoming place. A smile is care for those with HIV/AIDS. I had a and songs. At the end, we have hot cider
the most important, but the furnishings few friends who were dying and that and cookies. The carillon plays and we
are expected to give something. I’ll do I was visiting. Suddenly it went from all gather outside under the forever
anything to help create something that the edge of my radar to the centre of sky. It’s a magical moment. The AIDS Above, SnowBall 2012: Elemental. Top right, Art with Heart 2012.


2003
The Casey House child-care fund is established to help families, and
especially women, access HIV healthcare.
The property at 571 Jarvis St is purchased so that Casey House may
2001 expand its care. As planning gets underway, office space in the property
Outreach programs for street-affected and marginalized populations are is leased to AIDS service organizations, including Fife House.
launched. A Casey House nurse staffs the Sherbourne Health Centre health
bus once a week, providing access to specialized HIV/AIDS clinical care. Feb 2003
Casey House is engaged in international knowledge-sharing, with project For Casey House’s 15th anniversary, SnowBall
partnerships in India, Russia and Vietnam, as well as across Canada. is launched as an annual fundraising event.

2001 2002 2003 2004 2005

I worked for PWA, but I’d never been I’m not alone, and while I’m not alone By the numbers
to the house. I had lots of friends who I’m not scared. They found the HIV
passed away here. They were dropping drugs counteracted my schizophrenia
like flies, not a happy place. I was in St meds, so we keep rebalancing. Women at Casey House

2+98 20+80
Mike’s with an esophagus infection, I take the healthy-cooking classes,
three and half weeks on heavy antibi- physiotherapy, massage, the hairdress-
otics. I was medically cleared but only er. The new building will have more
weighed 116 pounds. I lived in a base- space, more beds, more therapy. And
ment apartment that turned out to have more barbecues. I think of this place
black mould. I was not well enough to as my resort. I leave all my cares in my 1988 2007
be on my own. I came here and I was apartment. This is my extended family.
% of women clients
floored. People knew my name before I met a lot of interesting people, all sorts
I got upstairs. The care is incredible. of characters. I’ve made a lot of good In 1988, only one out of 93 people
It’s more of a home than an institution. friends here. admitted to Casey House was a
It’s not just a place to die anymore; it’s a woman. By 2007, women accounted
place for life, a place to get well. I came for approximately 20 percent
in at 116 pounds and left three weeks
later at 152.
Dan Chisholm of the population served by
Casey House, a percentage that
HIV/AIDS has not gone away at this Casey House reflected new infection rates.
Registered Nurse
point. Until there’s a cure, this could af- since 1988
fect anyone. Everyone knows that there Aging and HIV

50+50
is still a struggle to get services. A smile We’re pleased when
and a greeting means a lot, can give you we get to send some-
the courage to push on, the extra TLC one home. Fifteen
ribbon is lit up on the tower — actually employed; you are healthy for a while to get through. There are a lot of us out years ago, we didn’t get to do that. I
a breast cancer ribbon with a red gel, and then not. There will be commu- there to whom this building means a started at Casey House in November
but it works. nity programs that get people out of the lot — a place to go where we just can’t of 1988; it had been open about eight
% of clients older than 50
The day program is really going to house and keeping their minds active. handle it. I’m glad they’re keeping it in months. I came from ICU at a major
help with the key issue we face: HIV is You don’t have to run around the city; the neighbourhood. This corner is dog downtown hospital. I had heard of Since the advent of HAART therapy in
still in the closet. Twenty, 30 years on, everything is in one place. A massage corner, dog central. At Halloween, we Casey House and that it was a great 1996, HIV/AIDS has become more of a
it’s still not safe for people to come out therapist, a pharmacist and physiothera- get one or two kids but tons of dogs. We place, and I felt like I needed to be of chronic disease that can be managed for
and say they are living with HIV. How pists. The healthy cooking program is eat the chocolate and give out dog treats. service to my community. And the staff decades. However, as people age with
do we handle that phobia? A 21-year- great. We make a meal, share a meal, was a majority gay, which was liberat- HIV/AIDS they become more susceptible
old finding out they have HIV is like a to specific chronic conditions associated
learn how to cook when the food bank is ing. At the time we didn’t know that
Judy
with aging, such as cardiovascular
deer in the headlights. Casey House is not fully stocked. The new building will much about AIDS. We just knew it was disease, diabetes, arthritis, dementia
a place for that person to be held. It has have an actual teaching kitchen. Right deadly. There was a lot of stigmatiza- and some cancers. Approximately
to be more than medicinal. For some, now we do the prep but have to send it Client tion, homophobia and AIDS-phobia out 50 percent of people cared for at
the cocktail is a balm; for some a toxic down to the kitchen for cooking. This is I was in the hospital in the community. Meal trays weren’t Casey House are 50 and older.
bomb. Casey House provides a safe place a place you can relax, feel at home, talk with pneumonia in delivered because dietary staff were
to nurture, to persevere through. We about things and get feedback. Though 2005. They told me afraid to go in; partners were being
thought it would end; they kept talking sometimes we don’t talk because the I would die. Shoved a left out — there was a lot of hysteria. HIV, stigma poverty
about a cure, but around the world mil- food we made is so amazing. tube down my throat. I knew transmission was sexual, so
% of clients who have

50+50 20+80
lions of people are still living with and It’s not the HIV that’s getting us — They said I wouldn’t last the night. I I had no fears or qualms. And Casey
dying of AIDS. Casey House is a light I’ve been positive for 23 years — it’s kept losing weight; I could feel my bones House was grassroots, the community
in the tunnel. the cancers. We’re getting old. It can pressing into the bed. They released me rallying together because our loved
be a tough road when you have more after telling me I wouldn’t last the night. ones deserved better. You can have a
than one ailment. And we don’t know I couldn’t walk. I was on oxygen. I had building, but if you don’t have caring
Bruce the long-term effect of the drugs. We’re
guinea pigs. It could become a chronic
never heard of Casey House, but when
I got there it was like I was home. They
compassionate staff . . .
When I arrived the house was full. Not Chronic A major mental
Client disease like diabetes as long as you take are compassionate, not judgmental. all were actually dying, but most were
depression health diagnosis

C a s e y Ho u s e h a s your meds. Those are down from 20 The true meaning of TLC. The nurses bed-dependent. We weren’t experts More than 50 percent of people
changed over 25 years. pills, three times a day to five a day, but and doctors are like family. in the beginning. We were just manag- receiving care from Ontario HIV/AIDS
It went from being a there’s something psychologically wrong I didn’t know how much HIV people ing symptoms of pain and nausea. We organizations report struggles with
hospice to now being stigma, poverty, unemployment
with thinking, “All I have to do is take had access to. Casey House opened a lot became experts in pain management.
or lack of food, while 30 to 40
a bit of everything. So a pill a day.” I’ve been very lucky, and I of doors for me. I’m also schizophrenic, If you could manage the pain and symp- percent are coping with mental-
many of us are living long and healthy wouldn’t wish this on my worst enemy. and if I have an episode, whenever, I toms, they wanted to live and enjoy health issues, housing instability,
lives, but everyone else’s life goes on and You need support; you need a will to live. come. Even at 12 at night. Someone will another day. It seemed somewhat never- problems accessing care, addictions,
ours stays the same. It can be hard to be Diseases hit harder — a cold can kill you. always talk to me; I can sit and watch TV. ending — lots of deaths, there were no violence and a lack of life skills.


2006
Casey House launches a new model of care, addressing the changing
needs of the increasingly diverse population affected by HIV/AIDS and
implementing new standards for interprofessional approaches to care.

Aug 2006 April 14, 2007
The International AIDS June Callwood dies. Thousands attend 2008
2005 Conference is held in Toronto. a memorial gathering at Casey House, The number of HIV-positive Canadians has risen
Planning for a new day-health Casey House presents at in collaboration with several agencies to 65,000, up from 57,000 in 2005 (a 14 percent
program begins. numerous events and symposia. she helped to create. increase in three years).

2005 2006 2007 2008

treatments. I was always asked if it was At that time we called them residents.
depressing, but strangely it was sad but Now they are clients. The face of AIDS
not depressing. A lot of death happened has changed. People are living longer;
here, but a lot of life happened. On the they come in for supportive care, for
good days we celebrated and on the bad rehabilitative care. We focus on getting
we consoled. There was a lot of laughter. them out in good physical and mental
Coming here from a hospital was like health. This is a beautiful old building,
coming in from a violent storm. We but it was not meant to be a medical
focused on quality of life. No one was care facility. Wheelchairs and walkers
left alone, not until that final breath. are hard to manoeuvre. It’s exciting
That’s what we did. We talked people because we’ve been discussing the day
through, coaching them through the programs for many years. It’s so needed
dying process. It was very sad but reliev- in the community and will increase
ing that this courageous battle was over. our capacity, extending and enhanc-
We developed rituals: the candle in the ing the services we already have. If we
front window that was lit when a resi- keep people healthy, we keep them out
dent passed. A memory book with the of emergency rooms and hospitals.
date, time and a couple of People often get lost in the
sentences describing each system, but those who are
client’s uniqueness and Coming here isolated will be able to con-
character. It was acknowl- from a hospital nect. Community-based
edging but also cathartic. was like coming health organizations are
You see a name and it all in from a so needed, more so in To-
comes back to you. violent storm. ronto because this is where
There were many joyful We focused on the vast majority of HIV
moments here. Five or six quality of life. is. We’re in the centre of
years ago, a client who had Dan Chisholm the city, we’re accessible,
been in and out many times ♥ people don’t always have
over two years was sent to to make an appointment.
the hospital for chemo that didn’t work. One of the things that worries me
They offered palliative radiation, but in- is the increase in HIV. It is scary and
stead he came to Casey House. He want- worrisome. Why is this happening?
ed to go home to northern Manitoba to There might be the perception that it’s
die. We got all the resources together but a manageable disease, but it is also a
had a lot of trepidation; we weren’t sure lifetime commitment to medications.
he was going to make it. And if he dies There’s been a tremendous amount
in flight there are all sorts of legalities. I of education, but we need to do more.
worked a full day. I was tired but exhila- I love my work, and it’s always been
rated; it was someone’s dying wish and about the quality of care. I wouldn’t
I was a part of it. We took an ambulance have been here 25 years if it wasn’t
to the Island airport and left about 9pm. something to take tremendous pride in.
I sat beside the client and held his hand I will miss this building tremendously.
and talked to him. It was hard to tell, It has a lot of memories. But I’m going
but I think he knew he was going home. to take all those memories with me.
I saw the northern lights and thought,
“It’s a sign.” They were so incredible, a
spiritual experience. He couldn’t swal-
low, so I administered a painkiller, and
Siamak Hariri
he slid in and out of a comatose state. We Architect
landed in a northern town at 3am, and You live for projects The embrace of the old and the new, to day uses of the clinic — all visible in a Above and top right, a rendering
the ambulance got him to the hospital. like this. To build a lovingly restore and then build around. singular dramatic view. An embrace and model of the planned
About 20 family members were outside building that makes a Like a ménage à trois: the Grey Lady, the you feel when you walk in, literally and redevelopment of the Casey
to greet him. I said my goodbyes and got difference with people new building and the gardens. From spiritually enveloped. House facilities at 571 Jarvis St.
Courtesy Hariri Pontarini Architects
hugs from everyone. He died three days who make a differ- the earliest sketches, the inside was a It was originally thought that there
later, but I was just thankful that he got ence. The most important thing was to garden. A light-giving, life-enhancing should be aspects that are unabashed
there. It’s just one of the many wonderful establish a feeling, an atmosphere, of garden. The inside is fully transparent, and unapologetic. Like the ballet school,
moments that Casey House could give care. The word “embrace” kept coming so you can see everything at once — the a sister to the institutions along Jarvis.
back to our clients. up. Change starts when one embraces. struggle, the compassion, the day-to- In this city of compassion, we’re not


Casey House Celebrates 25 Years!!

Casey House Celebrates 25 Years!!

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Casey House Celebrates 25 Years!!