PEOPLE with disabilities

A question that comes up some is how I got interested and involved with adaptive rowing. It's an honest question as I don't personally have a disability and I've only gotten involved in the last 5-years. Here is the long version...

My first exposure to adaptive sports was watching the MTV movie "Murderball." I forget exactly how I found out about it, but I'm a sucker for sports movies. I rented it and watched it. I think I watched it three times in a row that first sitting. Then promptly went out and bought the movie. I watched it every day for a little over three months. I made every member of my family watch it, I made every friend watch it, anyone who knew me saw it or heard about it.

It just blew me away how the sport harnessed these guys' ability. I also loved hearing their stories and how they approached life and sport. They were getting the physical benefit of sport, but also the camaraderie and teamwork went way beyond practices and tournaments. Competitive sports are all about people breaking boundaries and expectations, pushing yourself past what you thought possible, discovering yourself and gaining confidence that transfers to everything else about life. It is also about learning from others, having other people push you to do new things.

People with disabilities can't necessarily just go out and put on running shoes to get a workout in. The act of working out may require specialized equipment (expensive equipment), it may require assistance from others for setting up, getting equipment ready or more. Having a gym membership doesn't even guarantee access to machines or weights that are set up for people with disabilities. A doctor can't just write a prescription for activity and assume that will be enough. Getting the health benefit from activity can be an issue.

Then there is the transformational aspect of sport. In order to experience this you have to be involved. And getting involved can be difficult as mentioned before. There is a difference between working out alone and working out with others. The teamwork and camaraderie teach you just as much as the sport itself. Learning how others do things, tips and tricks about life and the sport, a place to share what you're learning and an environment that challenges you mentally, physically and technically.

After watching Murderball a million times, I read a book by Mark Zupan, one of the main character's, titled  "Gimp."  This book really helped take people with disabilities off of a pedestal that society likes to put them on. People with disabilities are people - there is a range of personality, some of them are awesome and some of them aren't people I would really hang out with or even like. Mark Zupan is an amazing athlete and kind of an asshole - he even says this about himself. The book did a great job of showing that he was just living his live - when able bodied and after his spinal cord injury. He didn't become an angel because he was injured. He didn't have some new motivation in life or become a different person because of his accident. It was great to read about his story because it broke down the ice that I had put up between me and people with disabilities. "What do I say?" "What do we talk about?" "I need to listen and learn from this person because they have added wisdom because of their disability"...etc. These are some things I had thought in the past. But now - people are PEOPLE. I just talk to folks with disabilities the same way I talk to ABs (able body). Why would a physical disability effect your communication with someone?

Then, on my favorite holiday - St Patrick's Day in 2007 right after I finished reading the book I met him! At my favorite Irish Pub in Austin TX (Mother Egans). I was so nervous to talk to him. Not because he had a disability, but because he awesome and I'd kinda been obsessed with quad rugby and his story. I finally got up the nerve and said hello.  It was super fantastic because I knew his book backwards and forwards including the names of his family and friends. They were all there too and I called them by name before they even introduced themselves. I was kinda hilariously scary. It was a great night. He even wrote his phone number on my arm!

I ended up seeing some of the other quad rugby guys at Mother Egans after that and enjoyed visiting with them some. Then I started going to karaoke. A lot. As in, I'd go after work to sing a few songs to relax, then go home. I'd do that most every day :) It was definitely my main night time hang out activity. One of the DJ's at Common Interest where I would go in Austin had a congenital disability and had no arms/legs, or more accurately no hands or feet.

I went up to him the first time I saw him when he was DJing and asked, "Can I ask you a personal question?" His response was, "Yes, I can have sex." I promptly responded "NO! That's not what I was going to ask. I wanted to ask if you play quad rugby?" Sure enough he had, but didn't anymore. We kinda became insta-friends. I'm so glad I'm staying with him and his family in Colorado Springs right now. It's great catching up after not seeing him in 4yrs.

Rob was my first true friend with a disability, not just someone I talked to a couple of times, or an acquaintance. He showed me that it's not AB's job to take care of people with disabilities. That they know their bodies and have systems to get things done and live their life. If/when they need help, they'll ask, just like when my hands are full and I ask someone to please get the door for me. Just like that - just like how people interact in every other way in life. Again, the emphasis is on PEOPLE in the sentence people with disabilities. People living their life in community with other people.

Fast-forward to Pittsburgh. I knew they had an adaptive program and I had my eye on it before I moved up there. At first, I had to get settled, figure out the club, and get the program I was in charge of for youth up and running. Then I was given the opportunity to take over the team. I was so excited - but was trying to keep my cool about it. I was also nervous. I mean, I had no formal training on adaptive rowing. *NOTE: this is something I have heard a lot on my trip from people who are nervous to start programs, and this type of training doesn't really exist.

Running the adaptive program was a mix of terrifying and awesome. I was always nervous we wouldn't have enough volunteers, or that the equipment wouldn't work for an athlete or something else. It always worked out. One thing about working with people with disabilities is that they don't necessarily expect everything to be perfect or work exactly how it should the very first time. They are mostly used to having to adapt things, do things with some trial and error, and for things to take some time to get them right. Most are also incredibly appreciative of someone's time and energy that they throw into making things work for them. This approach just made me work harder. I mean don't you want to do more when people are so nice, helpful and appreciative?

When I first took over the program the club only had recreational equipment for people who needed fixed seats. So when my first athlete who required a fixed seat, Jacob Brown, showed up I was again a little terrified, but also excited. His involvement helped me get an education on equipment and develop a 5-year equipment plan to ensure that we had all the equipment we might need to get people in boats. Every year he progressed and we adapted the equipment differently and I learned something new.

Every week working with adaptive I learned something new. It's impossible to teach this stuff, because it doesn't become relevant until you're dealing with it. Not just learning about equipment and working with the athletes, family members and volunteers, but just getting a heightened awareness of things to consider from the vantage point of people with various disabilities.

Another piece of my education came from the Bayada Regatta in Philadelphia. This regatta is an intensive conference of sorts for coaches. It not only is a great time for athletes to meet other athletes and compete, but it is a time for coaches and managers to meet other coaches and managers. A chance to see how other programs work with athletes with different disabilities and classifications, how they adapt equipment differently and get ideas to take back to develop their programs. A place of encouragement and where coaches can see how the sport has progressed and how their efforts are making a difference. Sandy Brown, the race director, has always been so patient with my questions. The first year I must have called or emailed her at least a few times a week at least over the summer as I really didn't know what I was doing. She has been a great professor of mine for adaptive racing. I definitely wouldn't know what I know without having been to this race the last few years.

Working with adaptive rowing has been a constant challenge and is always exciting. I love working with youth, adults...etc, but I have to say my passion is really working with people in the disability community. Helping harness ability, helping give people access to the health benefits from exercise, and connect with team-mates and learn from sport is the best. I'm hooked.