April Hubbard changed the plan for her death so she could be there to celebrate her life's work at one of Canada's most prestigious arts ceremonies.
The 40-year-old arts administrator and performer had pre-recorded her acceptance speech for the Governor General's Performing Arts Awards because she had expected to receive medical assistance in dying before Saturday's gala.
"It's only in the last few weeks that I said, well, maybe I can make it. Can we consider this and make it happen?" she said in a video call from her home in Halifax. "It's a very strange experience to go back and rewrite an acceptance speech that you didn't think you'd be alive to see."
Hubbard has qualified for MAID because she has tethered cord syndrome, a degenerative disorder of the nervous system resulting from a condition she was born with, spina bifida. While the condition isn't fatal, it causes tissue to attach to the spine, restricting movement and causing severe chronic pain.
The condition cut short her acting career at age 17, when she started using a wheelchair.
She'd fallen in love with the theatre three years earlier after her mother voluntold her to serve as a script prompter for a community theatre production of "Drinking Alone."
Throughout high school, she acted, stage managed and did everything she could to be in the theatre.
But once she started using a wheelchair, she said she got the message that there was no longer a place for her on stage.
"Every opportunity I had in the arts in Nova Scotia to be on stage dried up when I became visibly disabled," she said.
"At that point, I had to switch to arts administration just as a way of still being involved in some way and find a way to still have my soul fed by the arts," she said.
"That was the only place that there was room for me: behind the scenes where I wasn't visible."
In those behind-the-scenes roles, she's fought to make Halifax's theatre scene more accessible to disabled audiences and performers alike.
"When I did get a little foot in the door in any organization, it was the drive to bring others with me who were still not being heard and still not getting through the space," she said. "(I was) always thinking about, 'OK, I wasn't let into this space, but next year, if I'm here, who will I be welcoming in?'"
Hubbard started volunteering at the Halifax Fringe Festival in 2003, and eventually became its chair. Over the years she was involved with the festival, the organization committed to only using venues that were fully accessible, and trained volunteers to be sighted guides to people who are blind or low-vision.
She was also consulted when the Bus Stop Theatre co-op bought a building. They brought her on to make sure the space was accessible for both audiences and performers.
At the beginning of her advocacy, she said, she was one of the only voices in the room. That's changed over time, as she's found others doing similar work.
Those people have made it possible for her to rest when she needs to, she said, "knowing there's other people out there who will still advocate as well."
Hubbard was also able to return to performance.
It started in 2019, when the founders of LEGacy Circus reached out to her. They were training instructors on how to work with performers with atypical bodies and they asked Hubbard for help, she said.
As soon as she touched the trapeze, she fell in love.
Hubbard and her circus partner Vanessa Furlong started to work together, and soon she was performing publicly for the first time as an adult.
She approached her art with thoughtfulness, in contrast to her teenage self taking whatever role came her way.
"In my circus practice, I'd make a really big part of it showing my body fully and not hiding its differences," she said.
She wanted the audience to think about how her being on stage was different from an able-bodied performer — and why it was so uncommon to see.
"It felt very much like returning home," she said. "And I didn't realize until I got back onstage just how much I had kind of quieted a part of my soul."
When COVID-19 hit, she didn't want to give that up.
She'd been so accepted in the world of circus that she looked for another space that was welcoming to "outsiders." She'd done ticketing for drag shows in Halifax for years, so she was very familiar with the local scene and had long thought about becoming a drag artist herself.
But at the time, she wasn't able to get onto most of the stages because of her wheelchair.
So during the pandemic, when everyone was cooped up inside and drag artists started performing virtually, Hubbard developed her drag persona, Crip Tease.
"It was really amazing to get to do, to be creative at a time that everybody had those same limitations, everybody had to think about 'how am I going to make my art happen?' And it kind of evened the playing field in a lot of ways for me as a disabled artist," she said.
But since then, Hubbard's health has deteriorated. Her pain has worsened, and she's no longer able to perform.
That pain led her to pursue a medically assisted death in 2023, and she qualified under Track 2, which is for people whose condition is grievous and irremediable but whose death is not imminent.
That's given her some flexibility. She doesn't have a date set, she said, though she still plans to die later this year.
Extending her life also means extending her pain, which she describes as a constant burning and pulling sensation. When it's at its worst, she said, it feels like her legs are being sent through a meat grinder.
She's been resting up for the last several weeks to be able to make the journey to Ottawa, where she'll accept the Ramon John Hnatyshyn Award for Voluntarism in the Performing Arts in person.
Others honourees include musician Jeremy Dutcher, music producer Bob Ezrin and Oscar-nominated actor Graham Greene.
"I'm very aware of the fact that most artists never get a recognition like this in their lifetime," Hubbard said.
"They never get to experience the joy of hearing how much people appreciate them and their work. And those things are usually only said after somebody has already passed. So it feels like a real blessing to get to hear all that and to be here to experience all of those moments."
This report by The Canadian Press was first published June 12, 2025.
Nicole Thompson, The Canadian Press
