Housing and LGBT community activist
History will view Janine Fuller kindly, because her true courage in the face of adversity keeps growing.
She’s an “accidental activist” and long-time out lesbian whose supportive parents were closet Liberals. (“Pearson they really liked.”) She’s a 51-year-old Toronto export synonymous with Little Sister’s Book and Art Emporium.
In almost two decades of managing the queer-friendly West End store started by Jim Deva and Bruce Smyth in 1983, Fuller has raised funds and fought on behalf of the store in pitched legal battles that have taken her twice to the Supreme Court of Canada. She fought for freedom of speech and defended the store against the vagaries of institutional homophobia perpetrated by the Canada Customs and Revenue Agency, as it was known at the time, which seized its books and magazines at the border and almost killed the business in the mid ’80s. Those efforts resulted in her becoming one of the first five inductees into the newly created Canadian Queer Hall of Fame.
Lately, she’s had to fight “renoviction” and the threat of jacked-up rents in her Harwood Street apartment building—something that galvanized neighbours and tenants to form the group Renters at Risk.
Still, as stressful as all this has been, Fuller’s primary focus in life emerged more recently. As well as being a queer role model, she now wants to offer any help and support she can as a queer person with Huntington’s disease—a neurodegenerative disorder passed on from generation to generation through a defective dominant gene. The onset of the disease varies; there is no cure. Fuller said she is not exhibiting visible symptoms but the diagnosis has led to a shift in her priorities.
“Huntington’s has beaten everything else out,” Fuller told the Georgia Straight in a West End coffee shop. “I know I can’t talk about my life without also talking about Huntington’s. That would be simply disingenuous.”
This month, Fuller spoke at the 2009 World Congress on Huntington’s disease in Vancouver. (A leading UBC geneticist and Huntington’s researcher, Dr. Michael Hayden, was named to the Order of B.C. two days prior to our interview.)
“Huntington’s doesn’t have that big a visibility, and I think it’s important to speak up around it,” Fuller said. “So it was quite an amazing experience. But I was more nervous than I’ve been at just about anything else, really, and I’ve done a lot of talks over the years. It was such a weird thing, but I felt it was important to speak out about it. I felt I had the time and the energy for it.”
Huntington’s affects siblings in different ways. Some at risk are diagnosed as positive, meaning they are carrying the defective gene; the other siblings may be negative and in no danger of passing the disease on to their offspring. Fuller, her twin brother, and her older brother all inherited the gene from their mother, who passed away in 1995.
And due to social stigmas relating to testing for the Huntington’s gene, Fuller sees parallels with the LGBT community.
“There are so many issues around Huntington’s and being invisible around disease,” she said. “Huntington’s, in a weird way, is mirroring being queer. There are a lot of issues around coming out around being queer. And I have been out for over 30 years, but Huntington’s”¦.[it’s] not quite the same thing. And I think it’s important to empower people out there who have diseases to know that there are other people out there facing the same realities.”
This year, Fuller’s father passed away. Though her parents are no longer alive, Fuller has shown she is a daughter and sister of courage who would have made them proud.