The first time I meet Janine Fuller she is sitting quietly in a corner of her living room, listening to board members from Vancouver’s Queer Arts Festival review their work, go over budgets, and discuss upcoming events.

Her few interjections are mainly to ensure that various local artists are acknowledged for their contributions and work.

A few weeks later we sit down for our first interview, where she mostly deflects questions about her own contributions, and instead praises her coworkers at Little Sister’s, Vancouver’s pioneering gay and lesbian bookstore, which she managed for 25 years. She speaks highly of her friends and family, and of her partner, Julie Stines. When asked about her favourite memories from her decades of contributions to Vancouver’s queer community, she talks at length about her late employer, Little Sister’s co-owner Jim Deva, participating in the Pride parade.

But Fuller is a force to be reckoned with in her own right. Best known as an anti-censorship activist, she worked tirelessly for decades at Little Sister’s, as it challenged Canada Customs for targeting its shipments of gay and lesbian books.

Her friends and her partner describe her warmly as a hard-working, dedicated, loving, open-minded and generous person.

In addition to her activism, Fuller is an author, playwright, and performance artist. Before moving to Vancouver in 1989, she wrote and starred in a comedic one-woman play in Toronto called Big Women Make Their Own Clothes.

She has received numerous awards for her community work and achievements, including the inaugural Reg Robson Award from the BC Civil Liberties Association in 1997, the Freedom to Read Award from the Writers’ Union of Canada in 2002, and an honourary Doctor of Laws from Simon Fraser University in 2004.

She has also been inducted into the Q Hall of Fame Canada, and the Canadian Lesbian and Gay Archives National Portrait Collection. Most recently, she received the Mayor’s Achievement Award as part of the 2016 Vancouver Awards of Excellence, which “recognizes remarkable dedication to improving the quality of life for the citizens of Vancouver.”

An hour into our interview she pauses to point out the silence.

Have you noticed the phone hasn’t rung once since you’ve been here, she asks me.

She says that’s often the reality for people who are sick — others just don’t know what to say.

Janine Fuller sits on a dock with her brothers Joel and Rod in in 1963. Courtesy Janine Fuller

Fuller was diagnosed with Huntington’s disease around 20 years ago. It is a disease that has affected generations of her family. Her mother died of the disease, as did her older brother, Rod, and her twin brother, Joel.

Huntington’s disease is a genetic disorder in which the brain essentially slowly dies. In the beginning stages, symptoms include irritability and a decline in mental abilities such as attention span, decision-making and memory.

As the disease progresses, the physical capabilities of the person are compromised; physical movements become involuntary, and the jerking or twitching of various body parts may make activities like walking or swallowing more difficult. Dysphagia — difficulty swallowing — is often the cause of death in the late stages of the disease. The ability to talk diminishes; Fuller says people with Huntington’s are often confused as being drunk.

In later stages, people experience dementia and require living assistance.

Fuller says that it was a difficult process watching her brother Rod be diagnosed with the disease so early in his life, especially when he needed living assistance in his 30s.

“I think having the experience of growing up here and in Toronto with so many people having AIDS, and experiencing being with people in those moments of life when they weren’t going to survive, it did give me the ability to sit with someone in really important moments,” she says.

When Fuller tested positive for the disease in the mid-1990s, she says she was lucky to already be so actively involved with many things that she cared about.

One of those things was Little Sister’s Book and Art Emporium.

Janine Fuller poses in Little Sister’s in 1996, with Bruce Smyth (left) and Jim Deva (right). Julie Stines/Little Sister’s

Fuller has a history of working for controversial bookstores that experience violence despite, and perhaps because of, the necessary work and critical information these spaces provide.

Before moving to Vancouver, she worked at the Toronto Women’s Bookstore and was an employee there when it was firebombed in 1983.

She was still working there in 1988, when she met her partner, Julie Stines.

The couple, who have now been together 28 years, met after Stines told a mutual friend that she was interested in Fuller. The friend suggested that she help Fuller at the bookstore. When Stines arrived, they opted to go out for lunch instead. Lunch turned into drinks, and the two didn’t leave the bar until it closed.

They walked out into the unusually cold October night and embraced on Parliament Street before Fuller flagged a cab.

“The cab driver said to her on the way out to where she was going he had never seen a couple so in love,” Stines says.

“When I first met Janine and was introduced to her friends, they would refer to her as Saint Janine,” Stines remembers. “Getting to know her I realized very quickly why she was given this title. She would give her last dime to someone in need; her compassion, her great love of her friends and family, loyal and faithful to each and everyone.”

Julie Stines and Janine Fuller in their West End home. Layla Cameron/Daily Xtra

In 1989, the couple travelled across Canada by train, armed with only a few possessions and a case of beer gifted to them on the platform by a friend. They both recall that cross-country trip fondly. They describe being awestruck by the beauty of the country as they watched the landscape go by in their sleeper car. Upon arrival in Vancouver, the couple decided to stay on the west coast.

Fuller soon put her fundraising, activist and performance skills to work in her new job as manager of Little Sister’s.

She was hired after she approached the bookstore with a 10-page handwritten resume featuring mostly her artistic endeavours. Bruce Smyth, who co-owned the store with his partner, Jim Deva, says Jim fell in love with her right away and insisted that they hire her.

Fuller quickly became one of the faces of the bookstore’s battle with Canada Customs, which Little Sister’s was in the process of suing for unfairly targeting and seizing its imports of gay and lesbians books into Canada.

“She certainly was a voice of reason, but also a voice of courage,” says Aerlyn Weissman, who directed a documentary about the court case called Little Sister’s vs Big Brother.

“She was out front for that 10-year period, you could probably count the number of evenings she spent at home,” Weissman says.

Weissman estimates that Fuller must have fundraised about a quarter of a million dollars for the court case — and those were the days before social media, she points out.

“Everything was a poster, or go talk to somebody; it wasn’t a ‘like’ on Facebook. It involved a lot of personal energy,” Weissman says. “When you went to almost any cultural event within the community, Janine was there. . . She had such a deep understanding of the issues and just endless energy and willingness to engage with anyone who would support them in the struggle.”

Janine Fuller’s portrait in the Canadian Lesbian and Gay Archives National Portrait Collection evokes the anti-censorship battle she helped wage. Daniel Collins/Canadian Lesbian and Gay Archives

As the case inched its way through the court system in the early 1990s (despite Canada Customs’ delaying tactics), a third bomb exploded in the store, this time in the stairwell during store hours. No one was injured but the blast did considerable damage to the walls and floor, and smoke filled every corner.

Fuller was undeterred.

Smyth says some staff quit after the bombings, but Fuller stayed to help Little Sister’s stand its ground against Canada Customs, while simultaneously managing the demands of a growing retail business.

“The next day after every bombing they went to the bookstore and opened the store,” Weissman says. “There was a real gut-level courage there.”

That same “strength of character and courage” are still evident in her partner as she now battles Huntington’s, Stines says.

Fuller says the best part of her job as manager was working the register and talking to people.

After 25 years at the till, Fuller left the store in the fall of 2015 to tend to her health. Janine Fuller checks on her garden on her balcony. Layla Cameron/Daily Xtra

Bruce Smyth remembers feeling burned out by the court case, and especially the AIDS epidemic. “Pretty much everyone we knew was dying at the time, all our close friends,” he says.

He also remembers Fuller’s strength throughout the ordeal.

Fuller exhibited a lot of inner strength while she cared for many of the people who were suffering, Smyth says.

She also showed how capable she was at running the store, he says, so much so that he and Deva felt comfortable leaving her to manage the business while they spent some time in Mexico.

Smyth fondly recalls one of Fuller’s visits to Mexico. Smyth’s eyesight has never been strong, and he recalls driving down the coast with the side sliding door of the van open so that Fuller could describe the orchids lining the sides of the highway.

“She’s the most amazing woman I’ve ever met,” Smyth says. “There’s only one Janine Fuller.”

When asked what specific contributions Fuller made to Little Sister’s, Smyth immediately replies.

“Everything.”

Janine Fuller, left, stands with her twin brother Joel and their older brother Rod in 1963. Courtesy Janine Fuller

There are reports that one in four people with Huntington’s disease will attempt suicide.

Fuller’s twin brother Joel, who also had Huntington’s, committed suicide last December, a few weeks before he was set to enter an assisted-living residence, as he could no longer live on his own.

“From day one he said he would never want to go in a home, so he was always very adamant about that,” she says.

She received a phone call on a Thursday from Joel’s doctor, who said that he and Joel were discussing different living arrangements. On Friday, Joel called her to say the meeting went well. But on Saturday, police notified her that Joel was dead.

“The fact that we’re still debating the right to die, unfortunately people had to see my brother die. I get to live with the legacy of that, and many other people with Huntington’s end up going to other countries where it’s legal to make those choices,” Fuller says.

Interestingly, Joseph Arvay, the lawyer who represented Little Sister’s in court against Canada Customs, has also worked on high-profile cases in support of assisted suicide. Arvay and the BC Civil Liberties Association successfully fought for the right to make decisions about one’s own body; in 2012, the BC Supreme Court ruled the section of the Criminal Code prohibiting physician-assisted death is invalid. The Supreme Court of Canada issued a similar ruling three years later.

“I totally believe in people’s right to die,” Fuller says. “If you look at any coverage right now on the right to die and the changes that they’ve made in Parliament, Huntington’s is not in that category. . . So every time I read and hear about that I realize the importance of being able to talk about that in a really honest and truthful way.”

“I just wish our government could have the strength to follow through with what the courts have ordered,” she continues. “Because unfortunately for my brother, I didn’t get to be there. I would have been. And somebody got to find my brother, and that’s not the legacy that needed to be left.”

Fuller says she has decided not to go into assisted living and that she has discussed her decision with her family.

“It’s not the step for me,” she says.

Fuller says it’s understandably a difficult subject for Stines.

“She is my partner, my lover, my anchor and my ally,” Stines says.

“This disease which is stealing her from me is an unbeatable foe, the feelings of helplessness can be overwhelming at times,” says Stines, who is thankful to their friends for supporting them.

“Our lives together have been extraordinary and so full of love and happiness. I feel so blessed and grateful and she will always occupy every corner of my heart,” she says.

Julie Stines and Janine Fuller share an intimate moment on their balcony. Layla Cameron/Daily Xtra

Fuller says that at her mother’s funeral, many people approached her and admitted they hadn’t been in touch because they could not cope with her mother’s illness, even though she was well-loved and respected by friends and family.

“I think they felt bad that they couldn’t get it together, and I think many people can’t, because they just can’t express what it is,” Fuller says. “We live in a world that doesn’t empower people in their illnesses. . . People just can’t deal with talking about things that really need to be talked about.”

Fuller emphasizes that talking about these difficult subjects is better than doing nothing, and that simple gestures can go a long way.

“Pick up the phone and call people,” she suggests. “Don’t keep feeling that you missed that opportunity when someone’s dead.”

A young Janine Fuller looks like she’s offering to share. Courtesy Janine Fuller

Pat Hogan has no intention of missing the opportunity to pay tribute to Fuller.

Hogan, who founded Vancouver’s BOLD festival for older lesbians and dykes 12 years ago, plans to honour Fuller at this year’s event.

Fuller will receive the BOLD Woman of the Year award on Sept 2, 2016, in recognition of her anti-censorship work with Little Sister’s and her many contributions to Vancouver’s LGBT community.

When Fuller joined the team at Little Sister’s in 1990, she “took on the daunting task of raising both public consciousness about the case and the money to fund it,” says a section on her upcoming award on the BoldFest website. “She travelled coast to coast in Canada and the US, talking about her experience as a bookseller and a reader grappling with Customs’ arbitrary and homophobic censorship. She rallied Canadian and international writers, readers and booksellers to the cause, pushing and cajoling when necessary, but most often showing the way by her enthusiasm and commitment.”

“I think she’s a very solid person and she’s also very humble,” Hogan says. “Her presence is quiet and yet very profound. She doesn’t wave banners and say, ‘yay me.’ She’s just there. And I really honour her for that.”

Julie Stines and Janine Fuller have been together for 28 years. Layla Cameron/Daily Xtra

As I meet with Fuller and Stines for one last photo shoot, they’re preparing to go to Toronto for their niece’s wedding.

While I take photos of them in their living room, the phone suddenly rings.

It’s a childhood friend of Janine’s, someone she has known since she was five years old. She’s calling to say hello and to confirm she’s picking them up at the airport the next day.

There’s joy in the room.

Stines blows kisses into the phone as Fuller excitedly tells her old friend that everything is going according to plan, and they’re very much looking forward to the trip.

“You also need to proceed with life and enjoy all the things that matter,” Fuller tells me, “and do all the things that make your life all that much more brilliant.”