Our People, Disability in Rural Ontario

The famous book, “The Bottom Billion” by Paul Collier, is normally read as a treatise on world poverty. But for Nicole Flyn, the book lays the groundwork to think about stigmatization in communities more broadly. Nicole who is an emerging entrepreneur, a photographer, and the president of the Council of Community Living Ontario, has a unique story about thriving with Down syndrome in spite of stigma.

Nicole lives in Centre Hastings, eastern Ontario, north on Belleville highway 62, east on Crookston road. She says she lives “far behind the trees” in Centre Hastings, ten minutes from Madoc and Tweed, and twenty-five minutes from Marmora. Her two brothers, Andrew and Darren, her new sister who joined her family recently, and mom and dad, along with two dogs, are all nature lovers.

As an entrepreneur, Nicole runs a consulting company, where she goes to organizations across Ontario to advocate for disability, and equity, diversity, and inclusion (EDI). Most of her trainees are students. Recently, she was at Brock University to talk to students about indigenization, institutionalization, and EDI. At Seneca College, she spoke with students and therapeutic professionals to experience and gain hands-on skills to engage in EDI work.

“Baby Talk”

Nicole is a keen observer of social norms. Borrowing from Collier’s thinking, Nicole provided an authentic take on how stigma shapes peoples’ attitudes about Down syndrome.

“It’s not ok to be there by myself. There is fear when a person with Down syndrome is around. People have called me ‘the Downs’ or ‘the Downies’ frequently. People aren’t inclusive,” Nicole says.

Particularly, the attitude that Nicole despises the most is the “attitude of being treated as a permanent child.” “Baby talk” is annoying, she says. “When I was little, my brothers didn’t treat me differently. Here’s what I am doing; walking, talking, connecting, like everyone else,” she says.

“All of the time, people talk to my mom, not to me. Never to me. Never. When I am at the grocery store or at the bank, when I try to talk to them, the tendency is that they talk to the support person. I am always overlooked, stigmatized,” she says. The overwhelming ignorance about Down syndrome and society’s unwillingness to treat people with Down syndrome as adults contribute to stigma. Rather than meeting the person where they are, people often expect their support person to carry the load of inclusion.

Nicole was at the bank recently. “The teller kept looking at my mom, and she backed up and turned her back to the teller. That reinforced the teller to look at me.” The assumption is that a person who has Down syndrome does not need an independent and autonomous life. “The expectation is for someone else to represent me,” she says.

Why Doesn’t She Stop?

Kathy, Nicole’s mother joined our conversation to say how disappointed she was with peoples’ malice when it comes to individuals with disabilities like her daughter.

Kathy is constantly bombarded with questions from others about Nicole’s future, “Why does she need to go to college. Why doesn’t she stop?” But Kathy says, nobody thought to question her about her sons’ future.

While Nicole was attending Loyalist College and pursuing her diploma in arts and sciences, her brother was pursuing his graduate studies. But no one ever asked why he was studying, Kathy says. So, when she pushes back when others question Nicole’s work, they call Kathy the “tiger mom.”

Nicole went on to describe her experiences with regard to stigma. Take the difference between the butterfly and the slug, Nicole says. “People are willing to save the monarch butterfly because it's beautiful, right? But people aren't willing to save the slug, even though the slug has the same value, right? Similarly, people are not willing to save people who have Down syndrome because they don't see the value.” For Nicole, people with Down syndrome have similar problems to the ones that Indigenous people have faced, not giving them a chance to try, assuming their lives aren’t valuable.

Part of the stigma around Down syndrome is that there is profound ignorance about this condition. The cluster of three of twenty-one chromosomes or Trisomy 21 is referred to as Down syndrome, and that’s why the world celebrates Down syndrome day on March 21 every year. There are different types of Down syndrome, such as mosaic, translocation, depending on how chromosomes are formed, Nicole explains.

Clicking the Differences

Nicole’s dream is to travel the world. In March, 2024, she went to Trinidad and Tobago to make two presentations on health equity, ending stereotypes, and importance of inclusion of people with disabilities, including those with Down syndrome. She missed a trip to the UN headquarters in New York during the same time, since she chose to go to Trindad and Tobago. However, Nicole has recently been invited by the Minister of Diversity, Inclusion and Persons with Disability, Kamal Khera, to attend the United Nations in June of 2024, for the Conference of State Parties as a member of the Canadian Delegation.

Travelling brings out the anthropologist in her. Not just visiting places, but photographing candid scenes of diverse people, she says. Capturing moments when cultures manifest in peoples’ expressions is what she is looking for. She calls her vocation for photography, “clicking the differences.” Clicking the bottom billions who are not in most people's public imaginary. That’s what motivates her to travel the world.

Nicole’s education at Loyalist College specializing in sociology and cultural anthropology has sharpened her perspective on developing a photography niche around diversity. She also took technology courses that has honed her photography.

One day, she wants to study people with Down syndrome living in various parts of the world using photography. She wants to use visual media to capture how people survive and thrive with Down syndrome. She views her study as an ethical inquiry, something that can advocate for social justice. Her dream is to conduct this as a thesis study under supervision at a university.

Yoda and Community Allyship

Although Nicole lives in a rural town, her small community never let her down during hardships in life. There are multiple barriers for people with Down syndrome when it comes to living in rural areas.

Transportation is a major one. Kathy can’t accompany Nicole everywhere as she has to care for her husband who underwent surgery recently. This means Nicole needs to rely on her community to drive her to places where she needs to go.

“It’s like Yoda in Star Wars,” Nicole says, referring to the nature of community allyship in rural communities. “Yoda taught Luke that there was no difference, that Luke has to unlearn the doubt in his ability and learn to believe in himself. Parents, grandparents, and community members are all Yoda’s in my life,” she says.

The Yodas, the allies, help people with Down syndrome to believe in themselves. “To be given the chances to try; the dignity of risk,” Nicole says.

Towards a Disability Party

Nicole aspires to be a storyteller. Her craft is to blend photography with Down syndrome awareness. Aside from that, she is impacting peoples’ lives through leadership. As the president of the Council of Community Living Ontario, a confederation of more than 115 local associations for people labeled with intellectual and developmental disabilities, Nicole is striving to bring important changes to the overlooked developmental disabilities sector.

Among her main priorities as the president, she is fighting to increase funding for the developmental disabilities sector by 5%, the #5ToSurvive campaign. Funding for this sector has been depleted over time by successive provincial governments who have collectively failed to deliver their promises.

The #5ToSurvive campaign aims to bridge the gap in funding so that people labaeled with intellectual and developmental disabilities could have access to better social services. Not just that, Nicole also wants to advocate for affordable and accessible housing for her community, another key goal in her presidency.

Nicole has deeper hopes. She wants to build a disability party from bottom up, and drive the cause of the diverse disability community in Canada.

“It's very hard for me right now, putting the mind to something very specific. You don't wanna go narrow, you know. Because I have to think of so many options. I could go in so many directions. I just can't be too narrow,” she says referring to the challenge of developing a broader, more inclusive campaign that caters to disabled people in Canada, whether they live in urban or rural communities.