Casey House Celebrates 25 Years!!


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Over the past 20 plus years I have been a big supporter of Casey House Hospice. The need has never been greater and Toronto's Casey House has come forward as an example of Community, Business and Government working together. Within this 12 page supplement there are stories that will make you laugh and make you cry. I hope you enjoy the read and if you have stories that you can share, please do so.

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Casey House Celebrates 25 Years!!

  1. 1. 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’SGAY & LESBIANNEWS
  2. 2. 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 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.com2  25 years of Casey House: An xtra special Supplement
  3. 3. Stephanie Karapita Chief executive officerThe very first patient came 25 years ago.He arrived from the hospital, brought hereby ambulance attendants who were fullymasked, gowned and gloved.They brought him through the front door,and the receptionist came up and gave hima hug, a kiss on the cheek and said, “I thinkyou’re really going to like it here.” Since thenno emergency personnel have been gownedor 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, theToronto architecture — and so needed Toronto People with AIDS Foundation,by our clients. The disease has changed. the AIDS Committee of Toronto andOnly about 15 percent is palliative care St Michael’s are critical to address thenow. We can play a very important role complex bio-psychosocial issues facedin keeping people with HIV/AIDS as by our clients. These organizations,healthy as possible. For many people, together with our clients, are involvedCasey House means loss. It’s hard for in the planning of the new building andmany people to be here. We are reach- the new day health 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 enormouscreating a new model. Expanding our compassion and skill. She has a mas-beloved inpatient program, home care ter’s in nursing, specializing in mentaland 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 tremendousdesigned by professionals leadership.but delivered by volun- Without Mark Bonhamteers. Good nutrition is a Crying is just we wouldn’t be here. Hisbig 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 ofwe’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 scenewill 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, oneof 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 popularcare 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 justrent 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, suchmatch 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 theaccording 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 byships 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 guidedHouse’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 ourcare. 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
  4. 4. 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. 4  25 years of Casey House: An xtra special Supplement
  5. 5. 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, 25 years of Casey House: An xtra special Supplement  5
  6. 6. 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 6  25 years of Casey House: An xtra special Supplement
  7. 7. 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 25 years of Casey House: An xtra special Supplement  7
  8. 8. 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. 8  25 years of Casey House: An xtra special Supplement
  9. 9. 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. 25 years of Casey House: An xtra special Supplement  9
  10. 10. 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 10  25 years of Casey House: An xtra special Supplement