This story is based on interview excerpts of an upcoming episode of WXXI’s new Move to Include podcast on disability self-advocacy. The series launched on Jan. 12. Find it wherever you get your podcasts.
Family plays a key role in children's development and how they learn to speak up for themselves. For one local scholar, it began with a trip to the library.
“I had a child sized wheelchair. I couldn't really navigate through the shelving, and it was really hard for me to even get a book off the shelves,” Conan Gillis, 26, said. “I was old enough to recognize it, young enough to not really know what to do.”
Sticking up for yourself is a life skill that isn’t often found in any school curriculum, and there’s no one way to do it either.
Gillis first learned the art of self-advocacy through a home video his father made of a family trip to the local library in Honeoye Falls about 16 years ago.
“He filmed my siblings and also me going through checking out a book, having trouble reaching a book, having trouble turning my chair around, my siblings grabbing a book," Gillis said. “It demonstrated the problems.”
Around the time the video was published on YouTube, the library was set to undergo renovations. Gillis said when those were complete, the issues he’d encountered before weren’t baked into the infrastructure anymore.
“The shelves are more widely spaced. The general architecture is just much more friendly to what people in wheelchairs at least need.” he said. “It sort of set the tone, I think, for a lot of my personal approach to self-advocacy.”
Gillis’ trajectory in advocacy has since focused on education, architecture, and rethinking how disability is defined.
In high school, he successfully advocated for handicap access buttons on the main entrance doors. Then in college, his perspective shifted to seeing disability as more about the environment than the individual.
“There are two prevailing concepts of disability,” he said. “You have the medical model of disability, which is that disability is an individual defect or problem that ought to be cured or mitigated by medical means.
“Then there's the social model of disability," he continued. “It's essentially saying that the disability lies not in the impairment, but in the disconnect between the individual and the society.”
Through that lens, the disability in the library was rooted in the narrow aisles and unreachable books, not Gillis’ wheelchair. In the case of the school building, it was tied to the inaccessible doors.
The social model dates back to the mid 1970s. Mike Oliver is credited with coining the term, though he claimed the publication of Fundamental Principles of Disability by the Union of the Physically Impaired Against Segregation (UPIAS) was the starting point for the theory.
"It stated that: In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society," Oliver wrote in the textbook "Implementing the Social Model of Disability: Theory and Research."
Another way that concept has shown up in Gillis’ life goes back to elementary school, when he was provided with a personal computer around fourth grade. At the time, it was an accommodation. Today it’s become common practice in general education.
“Me having a computer ... really is what enabled me to unlock my potential in terms of education,” said Gillis, who is now a PhD candidate in mathematics at Cornell University. “If you look at what happened five to 10 years after I went through the system, everyone starts getting Chromebooks.”
The way Gillis describes it, his experience of advocacy has often been a team effort that includes parents, school administrators, teachers, aides, and the people willing to listen and make a change.
And the takeaway from his early introduction to the practice of advocacy still sticks with him today.
“The lesson wasn't necessarily that pointing to something and asking for it will work, is guaranteed to work,” he said. “It's more that it's a good first step.”
