The Illuminating Green Porch Lights of Arnprior.

Urban Runaway Inc. is shining a spotlight on two exceptional people who are raising awareness for disability rights and making a difference in the tight-knit community of Arnprior, Ontario. Meet Nicholas and Sarah, a mother and son duo whose unconditional love for one another shines brighter than the beaming smiles you see in their photo.

Nicholas is sixteen years old and has an Undiagnosed Rare Disease with Mitochondrial Dysfunction. Mitochondria are important because they are essentially the “energy factory” within us and if you fail to produce enough energy, the body doesn’t function properly. Symptoms present differently in each individual, depending on where in the body the mitochondria are affected. Mitochondrial diseases are long-term, genetic, often inherited disorders. One in 5,000 individuals has a genetic mitochondrial disease.

Mitochondrial Disease Awareness Week 2024 runs from September 16-22. Light Up for Mito is a global initiative as part of the week to raise awareness and support for those living with Mitochondrial disease. Many world landmarks will be lit up in green on September 21, 2024. Sarah and her friends and family have a tradition of turning their outdoor lights green for the entire week.

Raising The Next Generation Of Compassionate Changemakers.

Through my life learnings as mom to Nicholas, I have learned a lot about the world of disability, accessibility, inclusion and community. One of the biggest lessons I’ve learned is that most kids are greatly accepting to those with disabilities if they are exposed to it early in life, and if the environment they are raised in is an inclusive one. Nicholas started at A.J. Charbonneau Public School in JK and therefore grew up with mostly the same set of kids throughout his school years. When it came to Grade 8 graduation time last year, and the awards ceremony, I wanted to ensure that not just academics or athletics were recognized. It is important to me that values like empathy and inclusion are equally recognized. Therefore, we established an annual Inclusion Award for the A.J. Charbonneau P.S. graduating student who is welcoming and supportive of all students and creates an inclusive school environment. The inaugural winner was Connor Bertrand and I can’t think of anyone more deserving.

On The Topic Of Disability, Accessibility and Inclusion in Arnprior.

As a whole, Arnprior has been a great place to live and raise Nicholas. For the most part people and organizations have been inclusive, accessible and welcoming. However, this is not always the case. When building new infrastructure (or updating old infrastructure), creating green spaces, establishing new businesses, or even building new subdivisions, accessibility and removing barriers should be a required element. Things such as curb lips that aren’t flush, pathways that aren’t hard packed or paved, washroom facilities at parks without accessible stalls, parking lots without ample accessible parking spots, play structures built without elements that kids with disabilities can use, etc are all barriers that families like mine face.

We have several fantastic organizations in Arnprior for people with disabilities, such as Ottawa Valley Community Connections (OVCC), Arnprior Community Living, and L’Arche Arnprior but we need to provide the infrastructure for these organizations and their communities to thrive. Besides infrastructure, I also believe that every organization should have an accessibility plan and policy in place that outlines how they will accommodate those with a disability so that all barriers are removed and inclusion isn’t an option but a must. Families like mine often have to “fight” for basic rights like inclusion, and this shouldn’t be the case.

I encourage everyone to get involved with organizations such as these and volunteer within their community. Giving back it where it’s at!

By Sarah Tait, Arnprior Resident and Mother to Nicholas