In this episode, Kyle & Sean talk about how building community has helped them and how it could help YOU.
“No man is an island…,” as John Donne reminds us.
Growing up with a rare disease is, almost by definition, lonely. Faced with physical limitations that most of our neighbors don’t have to face many times makes us feel odd. With ataxia, we go through issues with balance that make us seem awkward and clumsy; but all people with disabilities face some kind of uncommon limitation, whether its using our arms or leg, trouble hearing, speaking, or seeing, facing mental issues or any other symptom of a disability. The unfortunate result is that many of us with disabilities feel odd.
However, the truth is that people dealing with disabilities are not alone. It’s important for everyone – disabled or not – to be a part of a community, but it’s even more important for people who feel isolated to find support and understanding from those facing similar challenges as them.
Kyle acknowledges that finding a community completely changed his life for the better. As he was coping with his FA diagnosis and its scary debilitating implications, he felt that the community he had in this challenge was limited to his parents and his family. So, in 2007, together they started rideATAXIA with a cross-country ride from San Diego to Memphis, to raise awareness and funds for the research of the disease he faces. It’s now a one-day event in six cities across the US, where people with FA and their friends and family can watch or ride themselves and raise funds for FA research. The best feature of rideATAXIA though is the gathering of people battling FA getting to meet and enjoy the company of others with similar struggles.
The community is the greatest part of rideATAXIA.
Sean talks briefly about the movie that documents his and Kyle’s cross-country bike race, The Ataxian. Aside from capturing their participation in the Race Across America, the film showcases the life of someone with FA – from Kyle and Sean to other families affected by this rare disorder. The film is a fundamental conversation-starter: it explores a struggle that is unheard of by most people. The film serves as a building block to bring people in the FA community together.
Kyle talks about going to France, for the first rideATAXIA event in Europe, and Sean is soon going to Australia for a community building trip and for a screening of The Ataxian.
At times we all feel isolated. Finding others with understanding is an essential part of being human, especially for those facing any type of disability.