Jane Darville fought stigma at height of AIDS crisis, with a little help from Princess Diana
'I just needed to do it,' Darville says of her work with people living with HIV/AIDS
Jane Darville helped to bring care and comfort to people dying of AIDS in the late 1980s — a time when stigma, homophobia and fear made that work so much harder.
“It was very hard to raise money and in some cases, even to get staff,” said Darville, who was a founding board member and once the executive director of Casey House, a downtown Toronto hospital for people with HIV/AIDS.
“Residents who came into the hospice would die … within a short period of time, because there was no treatment — and AIDS ravaged the body,” she told The Current’s Matt Galloway.
Darville has recently been appointed as a member of the Order of Canada, something she never thought would happen for “a little kid from Eagle Place in Brantford.” The honour recognizes her decades of “creative and compassionate leadership” in palliative care, both during her tenure at Casey House and as executive director of Vancouver’s Canuck Place Children’s Hospice.
She spoke to Galloway about battling that stigma in the early years of the HIV/AIDS epidemic. Here is part of their conversation.
Describe what Casey House is.
Originally, Casey House was a hospice for people with AIDS. It opened in 1988. I had been involved for a few years before that on the steering committee and the original board, and at that time people were really afraid of AIDS.
I've never been afraid of anything. And I wasn't afraid of people with AIDS.- Jane Darville
Residents who came into the hospice would die in the hospice within a short period of time, because there was no treatment. And AIDS ravaged the body. So it was difficult at first. People didn't want to support Casey House, and the treatments were limited. That subsequently changed, which is a good thing. So people are living longer. Casey House now says that it treats people with AIDS and those who are at threat of HIV/AIDS, you know, vulnerable people out in the community.
Why did you want to help?
I wanted to help, because I knew some of the things that were going on. But, you know, I've never been afraid of anything. And I wasn't afraid of people with AIDS, for whatever reason.
I just needed to do it … I wanted to know that what I did made a difference in someone's life, however short it would be.
Being on a board at that time of an organization that is supporting gay men dying from a disease that people didn't understand, some people didn't even acknowledge. What sort of heat did you face from members of the public? I mean, that was a tough time.
We faced a lot of heat, particularly the first year that we were open, the stigma and the homophobia continued for quite a while, and it was very hard to raise money and in some cases, even to get staff.
But, you know, as time evolved, it became easier. I must say, it's never been easy. The current Casey House still has issues with, you know, stigma and phobia and anti-addiction and all that sort of stuff. But it got easier to raise money … slowly it changed. But, you know, it still is there.
A huge signpost of that change was in 1991. You were executive director. Princess Diana shows up ... how did that happen? Describe what you remember about that visit, that was a monumental moment.
It was a monumental moment. It was quite exciting to hear it, actually, that she would be coming, because she was already starting to make a name for herself in the AIDS world. There is a hospice in London called Lighthouse, and she would often go there. And we had somewhat developed a connection with Lighthouse.
We had to figure out how to tell the residents, because first of all, you couldn't tell anyone until the itinerary was released by the palace. But one of the challenges was because a resident who might be there on Monday may not be there on Friday. We had to really gauge when we could tell people. I'll tell you, there were some really sick men in there at that time, but they struggled to stay alive, they just struggled — and they did.
The photos are remarkable because you see her, she sits down with the residents, but she also takes their hand. At a time when, as you said, people were afraid of those who are living with AIDS, and afraid of those who worked with people who were living with AIDS.
She came in in her regular sort of clothes, so to speak — nice clothes. She didn't have any gloves on, she didn't ask for a gown, nothing.
And she went room by room, would sit on the bed, take their hand. And there was one particular resident who was so emaciated and had visible Kaposi's [cancerous lesions on the skin], and she just sat down.
She knew about AIDS and she knew the medications that were available at that time. She knew how that would make them feel. And she knew the questions to ask. And in a couple of cases, it was older residents who had been married and had family and their daughters were there.
It was really quite touching, and she obviously ended up staying a bit longer than planned. It was a really exciting day for everybody. And because it was so visible and she's so prominent, it did make a substantial change in how people thought about it.
Audio produced by Ines Colabrese. Q&A has been edited for length and clarity