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Photography by Patient Voice.
Photography by Patient Voice.
Photography by Patient Voice.

Ian's story

Pompe disease

Hamilton, ON

Politics has always been a passion of mine. I studied political and social sciences at university and I’m acutely aware of the flaws in how our local governments are run. There’s no real transparency and no accountability. I feel strongly that I have ideas and values that can help my community, and I have the drive to make a difference. I probably would have run for office regardless of my health. But living with Pompe disease, experiencing the challenges of life on a ventilator and in a wheelchair, has certainly shaped my path. What I want is a better plan and a better city for everyone, no matter their circumstances.

I’ve long been engaged in advocating for change through patient organizations like the Canadian Association of Pompe, which I helped found, and which has helped enact meaningful change for patients with rare diseases. I’m bringing this experience and my deep-seated understanding of the importance of access, equity, and accessibility to my political work, but accessibility isn’t the focus of my campaign. There are so many issues we need to work on in Hamilton: affordable housing, safer streets, homelessness, mental health, and supporting small businesses.

“I feel strongly that I have ideas and values that can help my community, and I have the drive to make a difference. I probably would have run for office regardless of my health.”

The fantastic work of home-grown organizations like the Hamilton Alliance for Tiny Shelters, with which I stand behind, shows that if you really push, a lot of tangible change can be accomplished on critical issues pretty quickly. I’m campaigning to help bring practical solutions like this to centre stage.

Campaigning is hard work, and it’s even harder with a disability. The front steps of constituents, and the literal stages of the debate venues, can be a problem for my situation, and the financial aspect of campaigning, stressful for anyone, is a more herculean challenge for those on ODSP. It seems sometimes like the system is set up to make it harder for certain people to get involved and make their voices heard. 

Fortunately, I have incredible volunteers helping me make it all work, and there are always more people reaching out to see what I’m about. It’s amazing what can be achieved when a community of passionate, like-minded people come together.”