Winnipeg actor puts spotlight on invisible disabilities

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This article was published 03/06/2021 (1755 days ago), so information in it may no longer be current.

During what would be a chaotic family vacation when she was just 11 years old, Sarah Luby’s world changed.

The day after her mom had to visit a walk-in clinic in Minneapolis because of a tick bite, Sarah was taken there when she got very sick. She would have to be hospitalized for two days.

“It was probably the worst way of learning you have Type 1 diabetes,” Luby says.

Now in her mid-20s, Luby recalls how the diagnosis shook her world.

“My life was very different from that day on,” she says. “You’re an 11-year-old learning to give yourself needles, and learning to check your blood sugar and counting carbs.”

Diabetes and other challenges did not stop Luby from pursuing a career in theatre. Recently graduated from the Desautels Faculty of Music’s Musical Theatre program at the University of Manitoba, Luby has worked in the film/TV realm, scoring roles on the CBC drama series Burden of Truth and on the Lifetime TV movie Let’s Meet Again on Christmas Eve. She currently works by day at the local production company Eagle Vision.

But in the midst of that, she has also found a different mission: to bring attention to the issue of invisible disability.

In April, Luby became a Canadian ambassador to the Invisible Disabilities Association (IDA), a nonprofit, global organization with a mission statement offering “encouragement, education and connection with a goal to create a world where people living with illness, pain and disability will be invisible no more.” Luby took that role after becoming a member of the inaugural Royal Manitoba Theatre Centre’s national mentorship program in November.

“It’s for marginalized communities and I almost didn’t apply because I was like: Am I marginalized enough?” she says. “Which sounds absolutely terrible, but there is such a stigma about disabilities.

“But this is such an important message to get out, especially in the arts, speaking about invisible disabilities because you just don’t hear a lot about it. People with disabilities are the largest minority group and it doesn’t get talked about, so it’s a really important discussion.

Sarah was mentored by disability advocate David Connolly, the associate artistic director of Drayton Entertainment, which operates six theatres in communities across Ontario. Connolly, who had his lower legs amputated as a child, is the only amputee to ever perform on Broadway.

Luby has other medical issues, including Undifferentiated Connective Tissue Disease, a diagnosis she received at age 17.

“Basically, my tissues are being attacked around the bones, so I am in pain a lot of time because of that,” she says.

But she kept that fact hidden, like the insulin pump she wears under her clothes, fearing that her medical conditions might negatively affect her career aspirations.

“You don’t want to feel like a burden and you don’t want people to think you can’t handle a 10-hour rehearsal day with gruelling dance numbers,” she says. “I can still do it. I just have extra steps that I have to take.

“Sometimes I wish I could have spoken up sooner, but I felt that I couldn’t,” she says. “That’s why I’m doing this.”

“This” is Invisible, a song Luby composed with local artist Duncan Cox to raise funds and awareness for accessibility and inclusion in the arts.

The song’s music video shows Luby testing her blood and revealing her insulin pump, personal disclosures she would have found unthinkable years ago.

“I’m specifically doing it for the younger generation coming up, because I want them to know that they don’t have to hide in plain sight, as I say in the song,” Luby says.

“There is a fabulous Ben Platt quote: ‘The things that make you strange are the things that make you powerful,’” Luby says, referring to the Tony acceptance speech by the Dear Evan Hansen star. “I don’t think having disabilities makes you strange, but I do think it gives you a certain superpower, because it has shaped your life up until that point.

“I know I matured very quickly because of it, but also it gave me a lot of drive to get me where I am today,” she says. “I think it’s also giving me compassion, which I can put towards being an artist.

“These are the things that actually make you… you.” 

randall.king@freepress.mb.ca  

Twitter: @FreepKing