“He faced tremendous challenges in his life, but still used his voice to advocate for a better city.”
In one of his final columns for Ottawa Life magazine, Ryan Lythall wrote about his decision to get another tattoo.
His ninth tattoo, a semicolon, symbolized his solidarity with other people who persevered in the face of mental illness. “All of my tattoos tell the story of my life — the struggles, both past and present — and that I’m a survivor,” he wrote.
Few people survived as much. From the time he was six months old and diagnosed with a rare neuromuscular disorder, Nemaline Myopathy, Lythall breathed only with the help of a mechanical ventilator. Doctors predicted he would live for only a year or two.
Instead, Lythall spent the first 19 years of his life in CHEO, lobbied for the right to live outside an institution and became, in March 1994, one of the first in Canada to live independently on a portable ventilator. He set up in a Centretown apartment.
He went to Algonquin College, tried stand-up comedy and partied. In doing so, he came to understand how poorly served disabled people were in Ottawa.
It led him into a life of activism.
He campaigned for better Para Transpo service, wheelchair access to Bluesfest and in 2018 launched a mayoralty campaign to highlight the city’s serial inaccessibility. Lythall’s campaign led to a column in a community newspaper, then Ottawa Life magazine. He used that platform to educate readers about the lives of disabled people while highlighting problems with housing, accessibility, disability incomes, health care and Para Transpo.
Evening Update
Lythall died last week from the lung damage caused by his lifetime of mechanical ventilation. He was 50 years old.
Jerry Fiori, past chair of the Ottawa Disability Coalition, said Lythall was a trailblazer who demonstrated the importance of focusing on what people with disabilities could do instead of what they could not.
“We will miss his expertise, his strength of character, and his energy, which gave us the power to advocate for change,” Fiori said.
Somerset Ward Coun. Ariel Troster met Lythall in 2023, when he lobbied for improved snow clearing without which, he said, people in wheelchairs would continue to be trapped at home, unable to navigate sidewalks.
“Ryan was hilarious, but also unrelenting,” Troster said. “He faced tremendous challenges in his life, but still used his voice to advocate for a better city.”
Ottawa Life founder and publisher Dan Donovan hired Lythall as a columnist six years ago because he recognized him as a fine writer with a unique voice. “His intellectual strength was in every article he wrote,” Donovan said. “He was a powerful voice, and I learned a lot from him. I think we all did.”
Lythall’s sister, Gillian Underhill, said her brother’s resilience was rooted in a determination to experience life.
“Ryan never gave up because he had too many adventures planned and too many things he looked forward to,” Underhill said.
Months before he died, Lythall wrote about his dream of buying a wheelchair-accessible van to explore small-town Ontario and the rest of Canada.
Underhill said her brother learned advocacy from their mother, Irene, who fought long and hard for his right to the services that gave him independence. “He just wanted the same things you and I have,” Underhill said. “He strived to be like everyone else. He fought for that.”
He loved music, gaming, movies, socializing and comedy. In Lythall’s final hours in hospital, a nurse accidentally referred to his older sister as his mother, and he nearly died laughing.
“He thought it was the funniest thing ever,” said Underhill, one year older than her brother. “He always had that twisted sense of humour.”
Lythall’s life was uncommonly difficult. His disease caused profound weakness in his body’s central muscles, including those used to breathe and to swallow. He relied on personal support workers to suction mucus from his lungs and to feed, clothe and bathe him. He faced constant challenges getting and retaining the skilled help he needed and in managing his many health crises. Late in 2024, he spent weeks in intensive care following a series of infections.
Lythall also suffered anxiety and PTSD from his childhood experiences in hospital, where he saw friends die, sometimes in a bed next to him.
“I learned at a very young age how to deal with loss and death, but, at the same time, to be grateful for not only my life, but life in general,” he wrote.
That perspective allowed Lythall to embrace each day with gusto despite challenges that would crush other people.
To end his columns, he would often write: “Until next week, stay safe and keep on rolling.”
Andrew Duffy is a National Newspaper Award-winning reporter and long-form feature writer based in Ottawa. To support his work, including exclusive content for subscribers only, sign up here: ottawacitizen.com/subscribe
