“Research is not accessible. It's a very elitist and ableist world,” says Cobigo.
People with cognitive disabilities have been dramatically underrepresented in research, despite representing approximately a quarter of the population. The issue wasn’t just awareness—it was structural. Traditional research practices, such as inaccessible consent forms and rigid hiring processes, often exclude the very people whose perspectives are most needed.
“I realized that the way I was working—doing research with persons with cognitive disabilities—was something that was needed and of interest to other researchers,” she explains.
So, in 2020, Cobigo launched the Open Collaboration for Cognitive Accessibility (Open) to start breaking down barriers.
Making research more inclusive
Open is a not-for-profit, community-based organization that now hosts Canada’s largest neurodiverse advisory team. It serves as a bridge between academic researchers, industry partners, and people with lived experience of cognitive disabilities, facilitating their involvement in projects ranging from policy development to product and service testing. In just a few years, it has helped drive a new approach to research—one where academics and those with cognitive disabilities “share the power.”
“It's a virtual space where persons with cognitive disabilities can come, feel respected and trust the organizations and the people who work in this organization.”
“It's a virtual space where persons with cognitive disabilities can come, feel respected and trust the organizations and the people who work in this organization.”
Virginie Cobigo
— Clinical psychologist and professor at the University of Ottawa
In 2023, the University of Ottawa received a $2 million gift from the Azrieli Foundation to fuel and scale up Cobigo’s initial success—which she calls “transformational.” What began as a handful of advisors with cognitive disabilities has expanded into a network of more than 100 across Canada. Open’s partnerships now extend beyond academia to nonprofits, industry, and even organizations like the Bank of Canada.
Creating a new kind of partnership
Mélanie Héroux was one of Open’s earliest advisors. She was born with hydrocephalus and also has Arnold-Chiari malformation, both of which affect how her brain works. She says her lived experience helps researchers ensure their work is more accessible and relevant.
For example, she notes that researchers often use complex words that can be extremely difficult for many people to understand. By suggesting that they modify or simplify their language, it becomes easier for everyone to understand.
But the benefits go both ways.
“We are treated as humans first and foremost. We are treated with respect and dignity,” says Héroux. “we're not treated like objects and we're not seen just for our disabilities.”
Supporting researchers at uOttawa and beyond
Melissa Fernandez is one of many researchers across Canada who have benefited from Open’s advisors. An assistant professor in uOttawa’s School of Nutrition, she studies food literacy: how people make choices about food, how they prepare it, and how their environments shape those decisions. When a graduate student connected her with Open, she quickly realized how much she—and her field—had been missing by not working directly with people with cognitive disabilities.
One of her projects explored the barriers people face when trying to eat well. With guidance from Open’s advisors, Fernandez’s team redesigned their methods: simplifying recipes, adding visual guides, shortening interviews, and shifting from written surveys to interview‑assisted ones.
“Open has been one of the most fantastic partners I've had to work with,” says Fernandez. “Without Open, we wouldn’t have known how to rewrite consent forms, how to recruit participants, or how to interact with them in ways that made them comfortable and respected.”
Building better research
Cobigo is unequivocal about one point: inclusive research isn’t charity, and it isn’t a feel-good addition. It’s just better science.
“Research becomes more valid,” she says. “When you represent more experiences, your findings apply to a broader population. You identify gaps you never would have seen. And your work becomes more impactful because it responds to real needs, not just intellectual curiosity.”
Open’s advisors are not passive participants. They act as co‑researchers, consultants, testers, and interpreters. They help shape research questions, refine methods, and ensure findings respond to real needs.
And their motivation is clear.
“They want to be part of creating a world that is finally accessible to them,” Cobigo says. “They have been ignored by research for so long. We change the way we work so they can be part of the conversation.”
At its core, Open challenges the idea that inclusion is a burden. Instead, it demonstrates that inclusion is a strength—one that makes research more accurate, more relevant, and more human. In the future, Cobigo hopes it may lead to national standards for research inclusivity and to uOttawa becoming a Centre of Excellence on accessible research.
Although the Azrieli Foundation’s gift helped get the ball rolling, the transformation itself is being driven by the very people who were once excluded—and who are now helping to shape the future of inclusive research.