“I was born with congenital hydrocephalus and chiari malformation; both conditions affect the brain and make me a person living with an intellectual disability,” says Mélanie Héroux, an athlete in the Special Olympics and a fierce advocate for people with cognitive disabilities. “At birth, the doctors said that my chances of speaking and walking, and surviving in general, would be between 0 and 50%.”
Mélanie has been a competitive swimmer since the age of 13. In 2012, she won a bronze, silver, and four gold medals at the Ontario Special Olympics in Kingston. Following this performance, she joined Team Ontario at the Special Olympics Canada Summer Games in Vancouver in 2014 and took home 5 bronze medals — a feat she is particularly proud of because her 90-year-old grandparents living in B.C. were there to cheer her on.
Today, the 38-year-old champion works as an advisor and product tester for Open Collaboration for Cognitive Accessibility, or Open for short, a social enterprise based at uOttawa that provides resources, expertise, and guidance around cognitive accessibility.
Created by Virginie Cobigo, a psychology professor and researcher at the Centre for Research on Educational and Community Services (CRECS), Open hires people with cognitive disabilities, like Mélanie, to test or improve products and services so they are accessible for individuals with a range of cognitive abilities. Professor Cobigo recently won the More Inclusion, Better Research: Inspiring Stories Competition, organized by the Office of the Vice-President, Research (OVPR). The competition is one of many initiatives to promote equity, diversity and inclusion (EDI) in research at the University of Ottawa.
Discover the story of Virginie Cobigo, one of the winners of the University of Ottawa’s More Inclusion, Better Research: Inspiring Stories Competition. Transcription
“My area of expertise is in evaluating support services to ensure the social inclusion of people living with cognitive disabilities,” says Professor Cobigo. “I apply participatory research methods because, obviously, there’s no better way to assess the quality of services they receive, how included they feel in the community, and how to improve their inclusion, than to ask them directly and work with them to find and implement solutions.”
Open currently employs 30 advisors from Ontario, Nova Scotia, and British Columbia. The youngest is 18 and the oldest is over 70, and they have a wide variety of life experiences — some grew up with their cognitive disabilities, while others developed them as adults.
“What interests me most is developing a research infrastructure that allows for the equitable and fair contribution of people with cognitive disabilities,” says Cobigo. “This social enterprise is one of the ways we can shake up our practices so they truly are equitable and inclusive.”
How the Open concept took shape
The idea for Open came to Cobigo after collaborating with Professor Jeffrey Jutai, at the Faculty of Health Sciences, on the design and testing of an accessible medicine scheduling app called Max Minder. Although there are plenty of these kinds of apps on the market, none of them were created for people with cognitive disabilities and with their help.
Max Minder is unique because its users don’t need to know how to read, write, or type to use it — it’s all picture-based. It also doesn’t require them to remember the name or the dosage of their medications. They just click on the icons that best describe their meds until they zero in on the ones they are taking: Is it a pill or spray? Is it pink, yellow, blue, white? Taken with food or without? Mornings or before bed?
“It mitigates the risks of error,” says Cobigo. “If apps are difficult to navigate, users will get frustrated and abandon the technology. What we want is for people with cognitive disabilities to be able to use technology to improve their lives. Problem is, they’re not included in consultations. It was while working on this project that I realized the importance of bridging the gap between the social sciences and the technology industry.”
Her research team developed a protocol for how to engage people with cognitive disabilities in research and development processes and launched their start-up that brings together people with a stake in cognitive accessibility to co-create solutions.
“If you want to influence technology developers, you have to provide the service,” she says. “You’re certainly not going to influence them by writing scientific papers or by giving lectures, because a major barrier for them is access to information. Part of the challenge is that there’s a stigma associated with cognitive disabilities that hasn’t been addressed in our society. Another is the difficulty in actually finding them in the community, being able to reach them and motivate them to contribute. It’s a population that historically has not only been excluded, but also taken advantage of by the research community. So, there’s a relationship of trust to establish.”
Alexa, how do we make you more inclusive?
Open recently completed a project in which they collaborated with a professor in New Hampshire and a member of the Institute for Science, Society and Policy (ISSP) at uOttawa to evaluate the cognitive accessibility of Amazon’s Echo Dot, a speaker that uses Alexa, a virtual assistant based on AI technology.
“Even though we tend to want to make a full sentence, the machine only really understands key words,” says Cobigo. “So, when you have stuttering or articulation problems, or problems finding vocabulary, which could be the case for someone who has had a stroke, they can command the machine by using just a few key words.”
Mélanie was one of 24 advisors who brought the device home to test it and provide feedback.
“It was my responsibility to make sure the device’s features were functional and useful for someone with a cognitive disability,” she says. “I used it to check the temperature, so I’d know how to dress, and to ask about medical info. And we were able to program it so that it recognized my voice and my mother’s voice. It’s very helpful because it’s easier to talk to a machine than to type.”
Mélanie also advised two uOttawa doctoral students in psychology on their thesis projects. With Natasha Plourde, she co-instructed two sex education sessions offered to people with intellectual disabilities and their support staff, and she is currently advising Golnaz Ghaderi on her research project about financial abuse, which often targets people with intellectual disabilities.
Being part of the Open team means a lot to Mélanie. It’s a tangible way for her to advocate for her community and to tear down some of the barriers that prevent people with cognitive disabilities from thriving in society.
“It’s important to remember that people like me, with disabilities, have the same rights as everyone else,” she says. “It’s important to be patient and to have good terminology when interacting with us. I’m fairly independent, but there are other people in my network who have more severe disabilities and it may be harder for them to understand. Not all disabilities are visible too. Learning how to interact with us, and being inclusive when and wherever possible, can make all the difference.”