WATERLOO REGION — Despite having a voice that barely rose above a whisper, when it came to advocating for disability rights and vulnerable people, Jason Tomesch was louder than most.
Tomesch was born with Duchenne muscular dystrophy, a neuromuscular disorder that causes progressive muscle deterioration.
The average life expectancy of people with Duchenne is 26. Tomesch passed away at the age of 28. His parents, Sue and Dave Tomesch, said it was almost fitting that he passed on Dec. 3, which the United Nations recognize as the International Day of Persons with Disabilities.
His mother said that finding a cure for Duchennes and other neuromuscular diseases was important, but not a main focus for her son.
“Jason would always say, ‘Yes, we need a cure, but more importantly, how do we improve people’s lives right now?’” she said.
In 2011, Tomesch helped launch the Waterloo Walk for Muscular Dystrophy, an annual event to raise funds for the Muscular Dystrophy Association of Canada. The walk has been ongoing, but did not run this year due to COVID.
The following year, after a near-death experience with aspiration pneumonia that sent him to intensive care at Grand River Hospital, Tomesch had a tracheotomy that took away his voice and necessitated around-the-clock support from in-home care workers.
Nevertheless, Bernado Recine, one of the organizers of the Waterloo walk, said that Tomesch’s reliance on a wheelchair and respiratory aid didn’t stop him.
“He wasn’t held back by what he was physically going through,” Recine said. Whether it was meeting with the organizing committee or taking photos at the event, Recine said that Tomesch was “less concerned about himself and always wanted to contribute to the community and the society.”
Often a top fundraiser for the walk, raising over $35,000 over nine years, Tomesch served as an ambassador with the Muscular Dystrophy Association of Canada in 2015.
Tomesch’s advocacy extended beyond muscular dystrophy; he was passionate about animals, and raised funds for animal rescue organizations and shelters. He also dedicated time to meet with other disability communities through programs with Extend-A-Family, the Independent Living Centre, and Bridges to Belonging (formerly Facile Waterloo Region).
“He wanted to understand other people and what challenges they had, and he wanted to help them in any ways he could,” Sue said.
Joshua Kortleve, 39, knew of Tomesch years before he met him formally; he said that Tomesch’s reputation in the community preceded him. Kortleve, who also has Duchenne, spoke about how Tomesch was driven by the belief that people are disabled by their environment and physical barriers.
“Jason was a trailblazer who wouldn’t take no for an answer,” Kortleve said.
During the 2015 election year, Tomesch pushed for meetings with all election candidates in the Waterloo riding to ask for their support to introduce a federal Canadians with Disabilities Act.
Kayla Hurlburt, a nurse and friend to Tomesch, said that he was kind and respectful, but also assertive when it came to advocating for vulnerable populations.
“Jason would ask the hard questions to political parties, calling them up and asking what their party is doing for the disability community,” Hurlburt said.
Recognizing that many buildings did not have wheelchair ramps, Tomesch was pivotal in introducing the StopGap Foundation to Waterloo Region. StopGap is a not-for-profit that installs ramps for businesses to reduce physical barriers to spaces.
Sue said that Tomesch planned weekly visits to businesses around the region, and if buildings did not have wheelchair ramps, he would return with posters and information for business owners to install a StopGap ramp.
Tomesch also collaborated with Access Now, a crowdsourcing project that tracks the accessibility status of locations around the world on an interactive map.
Sue said that Tomesch’s last wishes were for disability advocacy to continue to be the focus after his death.
Specifically, Tomesch raised alarm bells about the shortcomings of the Accessibility for Ontarians with Disabilities Act, which has five years to meet its stated goal to “develop, implement and enforce standards for accessibility related to goods, services, facilities, employment, accommodation and buildings” across the province.
Hurlburt believes that Tomesch’s lasting legacy was his ability to change people’s perceptions about disability and challenge people to make all spaces more accessible.
“He didn’t let anything stop him, and did more in his short life then most do in a full one,” Hurlburt said.
Fitsum Areguy’s reporting is funded by the Canadian government through its Local Journalism Initiative. Email firstname.lastname@example.org Twitter @fitsumareguy
Fitsum Areguy, Local Journalism Initiative Reporter, Waterloo Region Record