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Our People, Our Community

Importance of Community when Living with Disabilities: Melanie Bidiuk’s reflections

Curated by Dilshan Fernando

Storyteller: Melanie Bidiuk

March 7, 2023

Advocacy by default

Advocating for disability inclusion is a way of life for Melanie Bidiuk and her family who live in Curve Lake First Nation. In their rural community, common stigmas of disability don’t exist. Through Melanie’s story, we discover that once we let go of individualized meanings of living and make sharing a collective value, we overcome our ignorance about diverse abilities of others.

Melanie is a prestigious ‘Global Investigative Journalism Award’ nominee who has had the most eventful and inspiring career. She had already been travelling in eastern Africa studying Wildlife Forensics, Paleolithic Archaeology, Marine Biology, and Natural History of east Africa when she was completing her degree in Biology and Anthropology at Trent University. But since her main motivation was to communicate why all these disciplines matter rather than focusing on research, she opted to be a journalist instead of pursuing a PhD. “I ended up volunteering and spending time on an archaeological dig in Central America in the jungle there and writing stories about it. That's where I met my husband. Ironically, a boy from Alberta, also in the middle of the jungle, in the middle of nowhere teaching artifact illustration,” she recalls.

Melanie is currently expanding Rural Ontario Institute’s (ROI) programming capacity, as its Communications Lead and Program Coordinator for the Rural Change Makers youth leadership program, by engaging with rural, remote and Indigenous youth to narrow gaps, minimize barriers and wrap leadership and community-economic development opportunities around the hopes, dreams, and aspirations of emerging leaders.

Melanie’s appreciation for Curve Lake First Nation stems from how her community makes her children’s everyday life joyful and inclusive, how the community embraces and cares for all children. When there is a family member who is disabled, “you become an advocate [for disability] by default,” she says. “Families are never the same when dealing with the barriers and stigmas associated with disability”, she asserts. And her life ever since her first daughter was born has been one of making the world more inclusive for everyone facing barriers whether physical ability or otherwise.

A landscape photo of a calm lake with some trees in the background.
Curve Lake First Nation – April 2022 View of Harringtons Narrows on Chemong Lake. Photo by M Bidiuk

“It was miraculous and devastating at the same time. In those beginning years, you think is she going to survive? And if she survives, what life will she have? Will I ever hear her laugh? Will I ever see her smile? And you know when family members are born into disability, the future is so unpredictable,” says Melanie reminiscing about her feelings when she discovered that her daughter was born with a severe disability.

Community to fall back

One of Melanie’s main strengths is her community and access to supports in the surrounding rural County. Curve Lake First Nation is a closely knit community located about an hour and a half north of Toronto. Melanie was born into a Ukrainian family and raised in the city – in Mississauga. Only when her grandparents went into long term care and after many travels around the world did she make Curve Lake her permanent home. Twelve years later now, she, her husband, two daughters, and three cats are proud residents of a community whose sharing quality defines everything they do.

The challenges of bringing up a child with a disability gain a different meaning when you have a supportive community, says Melanie. In her case, community generosity, acceptance and caring have created a place of safety and understanding of disability; respite from societal barriers.

Tents selling goods under some trees. A person stands in the foreground.
Curve Lake Pow Wow | September 2022. Community members, artisans, and vendor booths at the Curve Lake Pow Wow grounds. Photo by M Bidiuk

More than that, Melanie thinks that our lives become meaningful and happy when we share with one another, and when that becomes a habit. “The world is full of barriers and it's finding a way around them so that you can give your gifts, and we all have gifts to give, no matter what our abilities, we're meant to give,” she says regarding how sharing creates spaces for inclusion. For her, that’s how you start to think differently about disability, something inherently understood in Indigenous culture.

Overwhelming generosity

Living and thriving as a disabled person in the rural Curve Lake First Nation community is a joy in the first place. The bedrock of sharing and caring that Melanie describes stems from how the community thinks about resources differently. In a typical rural community, our imaginations and conversations surround access to and equity of resources in comparison to an urban community.

However, in Curve Lake First Nation, Melanie describes how the “system” of resource prioritization is different than we are used to. In her view, there are foundational resources that every person is entitled to – social, emotional, bodily, and discursive wellbeing. These go beyond financial resources: “What I have found in the community in which we live is that there's a different way of looking at things. In other communities resource prioritization might be money, wealth, status or power. But within this culture and this community, it's a different system. It's a different ideology and a different world view where it's people first and planet first, and then money. Power is not something that comes into that equation,” she claims.

With this “people-planet-first” world view, the community is bonded with abundant generosity. When our individualism changes into collectivity, we discover wealth in sources beyond money, Melanie highlights. And this generosity is overwhelming in the Curve Lake First Nation community, she says. For her, this community is the most welcoming, caring, supportive and “rich” community in which she has ever lived. “And it's ironic because I wouldn't say that it's a financially wealthy community. But I would say that there is a richness of wealth in those spiritual and social resources, that social capital and that willingness to support, help, and care about each other and, give of themselves to each other is undeniably evident,” she says.

Melanie’s Halloween example is thoroughly illustrative of how a community can transform disabilities into empathetic ways of relating to each other. “When I go take the kids out for Halloween, in other rural areas, small towns and villages, Lakefield, for example, you knock on doors. You say, trick or treat, you get your candy, and you move on” she says. In stark contrast, Halloween in Curve Lake First Nation is “an event like no other” she rejoices: “You knock on a door and that door opens and you're invited in, and there might be an elder on the other side of that door, giving you a homemade candy apple at the same time as a language lesson.” For Melanie, this fulfilling experience of you being welcomed, loved, respected, and included whether you're a First Nation member or not is the moment you encounter the thick “fabric of community” in her First Nation community.

Unspoken compassion

Accepting that a member of your family is disabled can always be hard, Melanie says. Often if the community you live in is also unsupportive, the road ahead can be tough for the family, she adds.

A tent with a red top in a field with people around setting it up.
Curve Lake Pow Wow September 2022. Making preparations for a grand celebration. Photo by M Bidiuk.

For example, when her daughter started high school, prompting a change in school systems and movement out of virtual learning, Melanie and her family had an exhausting and taxing process navigating many attitudinal, structural, and informational barriers. Surprisingly, they feel they face same the type of barriers time and time again in every new environment, she says. Therefore, having the right systemic supports, like inclusive education resources, is crucial for accessibility, she says.

Although having specialized programs like recreational initiatives or health programs targeted at people with disabilities is important for accessibility, Melanie shares the disability community’s broader view that designing the mainstream programs for everyone is the path towards inclusion. She thinks that having more mainstream programs universally designed can ease out the pressure on specialty services that are already in less supply in rural areas.

That said, “it really does take the people” who implement those systemic supports to make every disabled person’s life easier, Melanie thinks. And what makes Curve Lake First Nation different for people with disabilities is that they practice “a different kind of acceptance,” she says. “It’s just unspoken compassion” for everyone’s abilities, she emphasizes.

Digital accessibility and future

Melanie believes that bridging the digital gap in urban and rural communities will be a main priority for rural Ontario in the future. There were huge beneficiaries of internet-based work and education during the pandemic, she claims. Therefore, accessibility of digital technologies is an area that she feels is an important priority in the future.

With that, and reminding us of the value we each carry into the world, Melanie ended our conversation with some optimism: “Life is a project. Life is an adventure. It's one chapter after another. And there's really no defining the future. The future is unwritten. The future is what we make it.”

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