Tuesday, February 28, is the day Mardi Gras is celebrated this year. The day before Ash Wednesday and the beginning of Lent has been an annual party for many Catholics, especially the Cajuns. This year Mardi Gras also falls on Rare Disease Day. To find out more about this, I talked to two disabled dudes. Seriously. My good friends Kyle and Sean do a podcast called Two Disabled Dudes, in which they tackle life head-on, even with a disability. I wanted to know more about what they were trying to do and what February 28 meant to them.
Matt Lafleur of Sick Pilgrim: Guys, thank you for talking to me. Your podcast is called Two Disabled Dudes. Can you explain your podcast to someone who may not be familiar with it and what you are hoping to do through it?
Kyle Bryant: I have found that just by talking about my disability, I can take away some of its power to negatively influence my life. I also think that it is empowering to realize that your disability does not need to be the center of the universe even though it seems like that sometimes. So me and my friend Sean decided to make a podcast around these ideas. Some of our conversations directly address our disabilities and some of our conversations are about the stuff that we think about or do without anything to do with disability. We try to bring the ridiculous out of each other too so lots of the podcast is just Sean and I laughing at each other.
Sean Baumstark: We realize the importance of having fun and enjoying what life we’ve been given. Although we hope that our conversations add value, at the end of every day we’re just finding ways to have fun, live with hope and be optimistic about life. The podcast is a platform we use to try to to encourage others and talk openly about the struggles in life. Usually those struggles exist due to disability but that’s not always the case. One thing I hope we are doing is inspiring hope to some degree or another. And as Kyle mentioned, just talking about disability removes some of its power over our attitude toward it.
Matt: You guys mentioned probably my favorite thing about the podcast – that it puts disabled people in the driver’s seat, far from only giving “inspiration” when prodded. Do you think this is different than how most disabled people are portrayed?
Sean: I think it is different than how most PEOPLE are portrayed, even those without a disability.
Kyle: I think that when it comes down to it the only portrayal that matters is your self-portrayal. I think we buy into “society’s portrayal” when we take it to heart and let it dictate the way we feel about ourselves – it becomes a self-fulfilling prophesy. This is easier said than done so I think it is important to talk about this stuff and continually refine our thoughts in an effort to improve our self-portrayal.
Sean: Brene Brown is a psychologist that has given a TED talk and published many things I really like. One of the principles she holds dear is the act of being vulnerable and transparent in order to live a whole life. I’ve experienced the grip and negative effect the opposite has had on life, so I’m a fan of living with a degree of vulnerability and transparency that fosters trust amongst family, friends, and new acquaintances alike.
Matt: I love the idea of self-portrayal as the only portrayal that matters. Speaking of self-portrayals, you guys have both been diagnosed with Friedreich’s ataxia. Same as me. We’re 3 of the 5,000 FAers in America, and I am lucky enough to call you my friends. Why do you think it is that most people with a rare disease connect immediately with others with the same condition, or is that not always the case in your experience?
Kyle: Maybe there is a barrier created between people with and without a disability and it’s just that people with disabilities are so used to living behind this barrier that when they see others in the same position as them, there’s automatically a connection there, something about them that seems familiar. People that have the same condition don’t have that barrier between them, so it’s easier for them to make a connection.
Sean: Going along with that, I think what makes any connection is when people find common ground. Part of what helps fuse a brand-new relationship is sharing common ground with the other person. My guess is that disability often takes up so much emotional and mental energy within people that it is the easiest ‘common ground’ to identify with another member. To Kyle’s point, we as people tend to discredit someone else’s input if they haven’t “walked in our shoes.” Naturally, this is what builds those barriers.
Matt: What do your lives look like now? Where do you live and what are your jobs, besides podcasting?
Kyle: I live in Exton, PA. I am on staff at the Friedreich’s Ataxia Research Alliance and I run a fundraising program called rideATAXIA, I do public speaking and other forms of outreach, and I help collaborate with all of our different stakeholders: patient families, other advocacy organizations, government, pharma, academic scientists. My job is to get people excited about what we will accomplish together and to get a little more power out of each oar stroke as we all row in the same direction.Sean: I sit around and envy Kyle’s contribution [and his use of metaphors]. Ha. I live in Sacramento, CA, and work fulltime for a local privately-owned grocery chain. I help manage one retail location and help with the company’s overall new-hire orientation process and ongoing trainings for existing associates. Aside from that job and our podcast, I spend time developing a non-profit organization that I helped launch and also do some public speaking from time to time.
Matt: What’s your nonprofit, Sean?
Sean: The organization is “de:terminence.” The name is a hybrid word of ‘determination’ and ‘resilience.’ The mission and purpose behind de:terminence is to “help improve the quality of life, for those jeopardized by disease or disorder, through athleticism and physical achievement.” We aim to help others cross finish lines. Whether someone wants to run a 5k or a marathon, climb a bunny hill or Mt. Everest, ride their bike across town or across the country, we want to build an organization that helps provide the training, adaptive equipment and/or access to the needed resources to complete those physical challenges. I think of it like Make-a-Wish, but instead of sending someone to Disneyland or a Beyonce concert, we want to help them cross finish lines.
Matt: I love that. That is such a great mission. This month, your podcast is focused a lot on Rare Disease Day, February 28. What is Rare Disease Day and why should people, even those unfamiliar with rare diseases, care?
Kyle: Rare Disease Day is an opportunity to unite the worldwide rare disease to come together and realize our power when we come together. Like you said, Matt, the three of us have a disease with a population of about 5,000 in the US and 15,000 worldwide. That really isn’t that much, but when you consider the entire rare disease community, that number is much bigger. The work of the community isn’t limited to Rare Disease Day, but it is a chance for us to refocus.
Sean: Rare Disease Day is important because Rare Disease is easy to forget about. Our nation reacted when there was a terrorist attack that killed over 3,000 people. And I fully support and am in favor of the fact that we devote billions to the aid and erect multi-million dollar monuments to memorialize the tragedy. However, what did we do for over 1 million people that died of heart disease and cancer in the US alone last year alone? Those conditions aren’t even rare, yet the death rate is high and we still aren’t engaging in an all-out war against such tragedy. Sure, some people are. But “some” will never be enough.
Kyle: I think it is easy to dismiss “rare disease” because of the word “rare.” However, rare diseases are not so rare. There are 30,000,000 people living with rare disease in the US and 350,000,000 worldwide. It’s important that we all act together to address this.
Sean: What he said! 350 million is a lot of people! If we want to value each person’s life, then we have a lot of work to do and it can’t be done without the collaboration of, essentially, the human race.
Matt: Sometimes I’m afraid that a big reason people don’t pay much attention to the rare disease community is that it can seem like such a downer. A lot of rare diseases – like FA, the one we share – don’t currently have treatments or cures. But you guys don’t give off a pessimistic vibe. What does “hope” mean to you guys, and where do you find hope?
Sean: Hope means finding a reason to exist and move forward in life no matter what you are up against. I believe hope is somewhat naturally in my DNA. My dad didn’t have a great childhood but he was determined to make something of himself and raise a good family of his own. He fought in Vietnam and faced permanent disability due to a gunshot wound and he was left on the field for over 12 hours, even had his valuables stripped from his body from the enemy as he played dead. Fast forward 40 years, my father battled cancer for five years before he passed away due to it. However, he never once gave up. The circumstances in his life were often tough, desperate and scary, yet he always found a reason to keep moving forward. Watching him fight his battle with cancer has always encouraged me to find reasons to keep moving forward, despite my circumstances, especially the ones related to disease. I don’t have time or the emotional real-estate to give to pessimism, sadness, or the ever-elusive question, “What if?”
Kyle: Yeah…It’s hard to follow that. What he said.
Matt: In addition to Rare Disease Day, this year February 28 is Mardi Gras. As a Cajun, this is really cool to me. Do you guys have a Mardi Gras memory that sticks out to you?
Sean: Nope. *laughs* Call me boring.
Matt: I recognize the undeniably awesome treasures you both are to the disabled, rare disease, and Friedreich’s Ataxia communities. I love you guys, and it is such an honor to be friends with you and get your message out there on Rare Disease Day.
Nevertheless, I am so disappointed in you right now.
Ah well, thanks Sean and Kyle, and Happy Mardi Gras!