N.S. woman opens up about her decision to die and having a ‘living funeral’

At 39, April Hubbard is working to reshape how people talk about death, even as she faces her own mortality.

“I always kind of thought that I would have to end my own life at some point, even before MAID (medical assistance in dying) was legalized in Canada,” she says. “But I don’t think anybody expected it to be this soon for me and for me to have such a quick decline suddenly.”

While she hasn’t chosen a date yet, she began the application process last year and was approved after more than seven months. She expects to make her decision in the next few months.

Hubbard was diagnosed with tethered cord syndrome at 17, a condition where the spinal cord attaches to the tissue surrounding the spine. Doctors discovered two growths at the base of her spine, which were damaging her nerves.

For years, she has used a wheelchair and endured severe pain. However, multiple surgeries and treatments have led to multiple organ system failure.

As a longtime advocate in the disability community, Hubbard understands that her decision to pursue MAID may be seen as controversial.

But she believes much of that controversy is rooted in fear, and that’s part of why she’s chosen to speak publicly about her choice.

“I think it’s really important for me, especially as a disabled person, because a lot of folks in the disability community in particular are very against MAID, because they feel it’s being used as a tool against the disabled community. But for me, I think we need to have those conversations,” she says.

On September 26, a coalition of Canadian disability rights groups filed a Charter challenge against part of Canada’s MAID law. The group is challenging “Track 2” of MAID, arguing that it has led to premature deaths.

Track 2 allows medical assistance in dying for individuals whose natural death is “not reasonably foreseeable” and requires a longer assessment period than requests from those closer to natural death. It has been part of the law since 2021.

The opposing groups argue that offering MAID based on disability is unconstitutional.

“This law also sends a devastating message that life with a disability is a fate worse than death, undermining decades of work toward equity and inclusion. It’s time to put an end to helping people with disabilities commit suicide and start supporting them to live,” Krista Carr of Inclusion Canada said in a news release.

According to the latest MAID report in Canada, only 0.14% of all deaths in 2022 were from Track 2, while MAID overall accounted for 4.1% of deaths that year.

Hubbard’s request for MAID falls under Track 2. She believes the safeguards in place are effective and says her experience with the process was more empowering than her previous interactions with the health-care system.

“Often I didn’t have a say in what was happening to my body at all. I had to take treatments I didn’t want simply because that was the only thing available…. I was afraid applying for me that that would be the same reality,” she says. “But honestly, it was the best experience I’ve ever had in the health-care system. I was listened to, I was respected. I felt cared for. They made sure that I was making the choice for the right reasons.”

By taking control of her death, Hubbard also had the chance to plan her own “living funeral,” a farewell event for the former theatre performer to say goodbye to her friends, loved ones, and community.

The event, held at a Halifax theatre on September 29, featured music, dancing, and performances that ranged from poetry to burlesque.

“I called it a sparkly extravaganza,” Hubbard says with a chuckle in an interview on Monday.
“It was really a celebration of the way I lived my life,” she adds. “And remind everybody that, yes, this is a sad occasion and we’re mourning, but there’s so much happiness and joy in it as well.”

Hubbard even performed herself, finding the strength to lift her petite frame onto a trapeze for an aerial act with her friend and fellow artist Vanessa Furlong.

“I couldn’t get married. I could never have children. So my funeral was really the one big time in my life that I could bring everybody together and have that celebration,” she says.

Those who attended said the event truly captured Hubbard’s essence.

“This is like a reimagining of what a funeral and a celebration of life can be,” said performer and friend Maddi Adams.

“And the response of everyone coming out in love and support of her, is a reflection of the love and support she has shown for them,” added her longtime friend Colin Clarke.

For Hubbard, this experience is about having control over both her life and her death.