The Two Disabled Dudes Podcast - Navigating Disability
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.
“To hear from and learn from people who are in the same position…there’s nothing that compares to it.”
A lot of our focus lately has been of Friedreich’s ataxia or FA – the disease that both of us share. And that shouldn’t be a big surprise. FA has had a huge impact on us – it has forced us to see life in a different way and adapt. We have each had friends that have helped shape that impact. One of those friends is Matt Fritsch. Matt has a spinal cord injury and in this episode he joins us for a conversation about how community is essential for all of us no matter what disability we have.
“[Being disabled] is an exclusive club that no one joins on purpose…the parking is a right, not a privilege.”
Matt gives a few tips about navigating life with a disability. One of his most fundamental points is that we cannot do it on our own; that even though doctors, nurses, therapists, and surgeons gave him the same advice, he didn’t pay much attention to what they said, until it was told to him by someone within the spinal-cord injury community.
The need of community for those with disabilities is great. It’s easy to ignore the well-meaning advice and help from others, but when it comes from someone with the same challenges that you are facing – the advice suddenly seems much more important. This applies both within the SCI and FA communities, and among all those facing the challenge of disability.
As promised, here is the second half of our interview with Ron Bartek, president and cofounder of the Friedreich’s Ataxia Research Alliance, or FARA. Please note that the audio quality is less than ideal, but still definitely enjoyable.
Along with Ron’s very impressive resume, we found out that he learned to sleep standing up in Army Ranger School. Ron discovered much of what the body could do when deprived of normal physical needs like sleep and food.
Ron shares about the experience of his son Keith’s diagnosis with Friedreich’s ataxia at nine-years-old. A counselor who noticed Keith’s problems with balance and coordination recommended that Keith go to a neurologist for a check-up. At that appointment few months later, Ron and his wife Raychel were told that Keith had Friedreich’s ataxia (FA), a condition they’d never heard of and couldn’t even spell. When they asked what they could do about this diagnosis, the neurologist gave a grim answer – nothing.
To Ron and Raychel that was not an acceptable answer so they began researching FA on their home computer. They learned about all the symptoms of the disorder, and all of their research was very disheartening. However there was one piece of good news – the year prior (this was in 1997), scientists discovered the specific gene that caused FA. Ron and Raychel believed that since the gene was identified, it would be much easier to find a treatment or a cure, but that there was no organization that specifically researched FA. They decided they would change that.
Ron, Raychel, 5 other parents of children with FA, 1 adult patient, and 3 scientists submitted paperwork to the District of Columbia to initiate FARA and become its first board of directors.
One of FARA’s first actions was the submittal of a proposal to the NIH for the first scientific conference on Friedreich’s ataxia. Four months later, the grant was funded by the NIH, and six months later, that conference was held for people allover the world to attend.
Important to note is at that first conference, no drug company wanted to attend (because it’s too rare, they said) and no clinical trials for FA was ever done. Today, multiple drug companies are aligned with FARA. And they are hopeful for a cure.
The source of FARA’s success can be summed up in one word: collaboration. Knowing that FA exists as a rare genetic anomaly is a boring statistic, but meeting FA patients, seeing their strengths and weaknesses, getting to know them – helps to bring out the humanity of those who live with FA.That humanity is central to what FARA is, and who Ron is. Whether he is partnering with a group of scientists and drug companies or following the two stripes on the soldier’s hat in front of him, Ron Bartek recognizes that our strength is found in our ability to collaborate with others.