When Ophira Calof was growing up she thought she was accident-prone. She was clumsy and she had falls. Her parents thought she’d grow out of it, she recalled.
But when Calof, 26, attended university her physical condition deteriorated. “It all came rushing in,” she said when she was finally diagnosed with Ehlers-Danlos syndrome (EDS), a genetic disorder that affects connective tissue. “I had to find a way forward.”
And she did. Calof – originally from Ottawa – became a writer, performer, and producer. This month she’s bringing attention to EDS by curating We’re Not Waiting, a new photography exhibit now running at the Miles Nadal Jewish Community Centre (MNJCC).
She worked closely with award-winning photographer Chorong Kim to create an exhibit that celebrates the lives that people with EDS have created for themselves. The exhibit, which opened Feb. 9, runs until Feb. 26 in honour of Jewish Disability Awareness and Inclusion Month at the MNJCC.
“We’re living our lives in whatever way works for us,” Calof wrote in her notes about the exhibit. “We’re not waiting for society to create space, but finding a way forward ourselves.”
Kim, a former resident of Victoria, met Calof’s brother at the University of Victoria, where she worked as a photographer and video producer. After moving to Toronto she connected with Calof.
“We became good friends,” Kim recounted. “She invited me to be an artist on this project. I applied because Ophira is an amazing person. I was excited to get the opportunity to work with her.”
They began the planning stage of the exhibit in December. She and Calof visited the subjects of the exhibition (people with EDS) together. “People were enthusiastic. It was great.
“They opened up about their lives and invited us into their space.”
One of the subjects featured in the exhibition is Ilana Mendelsohn, a mother of three children in their 20s. She said she is involved with Ehlers-Danlos Syndrome Canada, a national non-profit advocacy organization that supports people with EDS.
Participating in the exhibition is a way of bringing attention to the disease, Mendelsohn said.
At the show’s opening people with EDS – some with walkers and others in wheelchairs – greeted each other.
Family members were also on hand to view the exhibit and schmooze. It was all very upbeat.
Much of the activity centred around Calof, who exemplifies the show’s theme of not waiting.
Following the EDS diagnosis, she had to interrupt her studies in the opera performance program at the University of British Columbia. But being in a wheelchair had not stopped Calof from performing.
She has starred in a number of one-woman comedy shows. Her most recent show, Literally Titanium, was presented in January at the Next Stage 2020, a boutique theatre festival produced every winter by Toronto Fringe.
She also co-created the sketch comedy revue, Generally Hospital, which was nominated for a comedy award.
In her performance work, Calof weaves together music, comedy and storytelling,
much of which centres on disability and the chronic illness experience.
She also curates and hosts the ReelAbilities Film Festival comedy program, along with consulting on accessibility across the comedy community and beyond.
Calof lives alone, but she’s near an accessible subway stop. Her groceries are delivered and she has a close network of friends.
She said she has an “unconventional support structure” that enables her to live independently, and a career that keeps her engaged. “I’ve built a life that works for me.”
