Jane Darvill fought stigma at the height of the AIDS crisis with a little help from Princess Diana
the current12:38Jane Darvill reflects on making a difference to those who were dying
Jane Darvill helped bring care and comfort to people dying from AIDS in the late 1980s – a time when stigma, homophobia and fear made that work more difficult.
“It was very difficult to raise money and in some cases even staff,” said Darvill, who was a founding board member and once executive director of Casey House, Toronto’s downtown hospital for people living with HIV/AIDS.
“The residents who came to the hospice would die within a short period of time, because there was no treatment – and AIDS ravaged the body,” he said. of present Matt Galloway.
Darvill has recently been appointed a Member of the Order of Canada, something he never thought would happen to “a little kid from Eagle Place in Brantford”. The honor recognizes his decades of “constructive and compassionate leadership”. In palliative care, during his tenure at Casey House and as executive director of Vancouver’s Canuck Place Children’s Hospice.
He talked to Galloway about fighting that stigma in the early years of the HIV/AIDS epidemic. Here is an excerpt from their conversation.
Describe what Casey House is.
Originally, Casey House was a hospice for people suffering from AIDS. It opened in 1988. I was on the steering committee and the parent board for a few years before this, and at that time people were really afraid of AIDS.
I was never afraid of anything. And I was not afraid of people with AIDS.– Jane Darvill
Residents coming to the hospice would die in the hospice within a short time, because there was no treatment. And AIDS ravaged the body. So it was difficult at first. People did not want to support Casey House, and remedies were limited. This changed later, which is a good thing. That’s why people are living longer. Casey House now says it treats people with AIDS and people at risk of HIV/AIDS, you know, vulnerable people 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 was not afraid of people with AIDS, for whatever reason.
I just needed to do it… I wanted to know what difference what I did made in someone’s life, no matter how small.
UN officials are warning that despite the stated goal of eliminating HIV/AIDS as a public health crisis by 2030, most G7 countries, including Canada, are withdrawing funding as the US has completely reduced its contribution.
To be on the board of an organization at that time that was supporting gay men dying from a disease that people didn’t understand, some people didn’t even accept. What kind of resentment have you faced from members of the public? I mean, those were tough times.
We faced a lot of heat, especially the first year we were open, stigma and homophobia continued for a long time, and it was very difficult to raise money and in some cases even staff.
But, you know, as times evolved, it became easier. I must say, it has never been easy. As you know, the current KC House still has problems like stigma, fear, anti-addiction and so on. But raising money became easier… gradually this changed. But, you know, it’s still there.
A big sign of that change was 1991. You were the executive director. Princess Diana appears…how did this happen? Describe what you remember about that trip. It was a memorable moment.
It was a memorable moment. In fact, it was quite exciting to hear that she was coming, as she was already starting to make a name for herself in the AIDS world. There is a dharamshala called the Lighthouse in London and she used to visit there often. And we had developed somewhat of a relationship with the lighthouse.
We had to figure out how to tell the residents, because at first, you couldn’t tell anyone until the itinerary was released by the palace. But one of the challenges was that a resident who might be there on Monday might not be there on Friday. We really had to assess when we could tell people. I’ll tell you, there were some really sick men out there at that time, but they struggled to survive, they just struggled – and they struggled to survive.
The photos are remarkable because you see her, she sits with the residents, but she also holds their hands. At that time, as you said, people were afraid of people who were suffering from AIDS, and were afraid of people who worked with people who were suffering from AIDS.
She came wearing her regular type of clothes, i.e. nice clothes. She didn’t have any gloves, she didn’t ask for a gown, nothing.
And she would go to each room, sit on the bed, hold his hand. And there was one particular resident who was so emaciated and he looked Kaposi (cancerous lesions on the skin)And she just sat down.
She knew about AIDS and she also knew about the medications available at that time. She knew how it would make him feel. And she knew the questions to ask. And in some cases, it was older residents who were married and had families and their daughters were there.
It was actually quite touching, and apparently she stayed a little longer than planned. It was a really exciting day for everyone. And because it was so visible and she was so prominent, it changed the way people thought about it.
