At 39 years old, April Hubbard is trying to change conversations around death, even as she approaches her own.

“I always kind of thought that I would have to end my own life at some point in some way, 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.”

She hasn’t chosen a date, but says she started the application process last year and was approved after more than seven months. She expects she may carry out the decision in the next few months.

When she was 17, Hubbard was diagnosed with tethered cord syndrome, a condition in which the spinal cord becomes attached to the tissue surrounding the spinal column. Physicians discovered she had two growths at the base of her spine that were damaging her nerves.

She uses a wheelchair and has lived with debilitating pain for years. But she says numerous surgeries and medical treatments have led to multiple system organ failure.

For decades, Hubbard has been an outspoken advocate in the disability community and realizes her choice to seek MAID can be controversial.

But she insists some of that stems from fear, part of the reason she’s gone public with her decision.

“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 Sept. 26, a coalition of Canadian disability rights organizations launched a Charter challenge against part of Canada’s law on medical assistance in dying.

The group filed a notice of application to challenge what’s known as Track 2 of  MAID, arguing it has resulted in premature deaths.

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That portion of the law allows medical assistance in dying for people whose natural deaths are “not reasonably foreseeable,” and also requires a longer assessment period than requests made by someone closer to a natural death. It’s been part of the law since 2021.

The groups opposing Track 2 argue it’s unconstitutional to offer MAID on the basis of disability.

“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 most recent report on MAID in Canada, MAID for individuals whose natural death is not reasonably foreseeable represented 0.14 per cent of all deaths in Canada in 2022, compared with all MAID provisions, which represented 4.1 per cent of deaths the same year.

Hubbard’s request for medically assisted death is under Track 2.

She believes safeguards in the system are working, and argues the level of choice and consultation she experienced as part of the process are better than in the health-care system overall.

“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.”

Taking control of her own death, she says, allowed her to plan her own “living funeral,” a chance for the former theatre performer to say goodbye to her community, friends and loved ones.

The event, held in a Halifax theatre Sept. 29, was a night of music and dancing, with performances ranging from poetry to burlesque.

“I called it a sparkly extravaganza,” Hubbard chuckles 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 took to the stage for a performance herself, mustering up the strength to lift her petite frame onto a trapeze for an aerial act with 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 attending the event said it was a true reflection of Hubbard’s spirit.

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

“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,” longtime friend Colin Clarke added.

For Hubbard, the entire experience has been about having control of not only her own life, but her death as well.