In Kelly’s Words- Inspire!Boston Q&A
At the end of March we held our 5th Annual Inspire!Boston (read recap here), it was awesome! But because this was the 5th time we’ve held this event for this audience, I wanted to try to do something a little bit different with my time up on stage. We decided to do a Q&A so the audience can ask the questions anonymously that they may be too self-conscious to ask face-to-face (which I totally understand!). I couldn’t answer all of the questions so I agreed to answer the ones I didn’t answer on stage in a follow-up blog. I’m a very open book and would always rather people ask me questions than wonder and not know. If you ever have questions for me, please ask!
How do you go to the bathroom on an airplane?
I don’t! To get onto an airplane I have to use an aisle chair which is a very narrow wheelchair that fits down the aisle. These stay in the airport because there is no room to keep them on the airplane so once I’m on the plane I’m stuck in my seat until we land. I have to be very conscious about what I drink and make sure I go to the bathroom right before I board the plane.
Do you get mad when people park in the space with the lines next to the handicap space?
Yes! DO NOT DO THIS, even if “just for a second”! There are many different reasons why someone needs to park in the handicap spots. For me, it’s not really the proximity to the entrance (I don’t mind walking farther), but I need the extra space the parking provides. To get my chair in and out of my car I need to be able to open my door fully. Having the guarantee that I will be able to open is why I park in the handicap space. Occasionally people will put their grocery cart in this space next to the handicap spot [insert angry emoji here]. It’s not as bad as someone parking their car there, but it till doesn’t allow me to open my door fully. And when someone has an accessible van with a ramp, they need the space even more!
How should I refer to someone who is in a wheelchair? Handicapped? Disabled?
I get this question a lot. The most important thing for me is to refer to the person first and the wheelchair or disability second. I think the best way to say this is “a person in a chair”. This is pretty literal, but humanizing by referring to me first and then the description of being in a chair. In terms of “handicapped” or “disabled”, neither of those have negative connotations for me though maybe they aren’t the most graceful. When I’m talking about sports I use the term “adaptive” rather than disabled, which has become common, and sometimes that word can be used to refer to everyday changes someone needs to makes.
Who is your hero or inspiration?
This was one of the questions I answered at Inspire!Boston but I thought I should answer it here too. I’ll answer it in 2 ways. During rehab there was a woman names Sarah Will who visited me and allowed me to see what my life could be like. She is a 12-time Paralympic gold medalist in skiing but beyond that she is just a regular person living in a wheelchair. I saw how she got in and out of her car (actually she had a Ford 150 truck!), that she lived independently, and did whatever she wanted in her life. That was how I wanted to live my life and she showed me it was possible.
The way I’ll answer this question is the way most little kids would answer it. My mom is my hero. She has been with me and supporting me every at every point and every turn of my life. She also is the one who instilled a love of skiing in me and I’m so grateful for that. She was (is!) an amazing skier and athlete. I can only hope that in 30 years from now I’m as active as she is now.
Have you ever rolled over Dylan’s toes?
Nope! Thankfully! I’m usually pretty good about avoiding that and knowing where I am compared to toes. She sometimes will move my chair on her own so I assume at some point that will get her toes. I also imagine I’ll get her toes sometime, but thankfully it hasn’t happened yet.
What’s your favorite sport?
This is easy, skiing. Always has been, probably always will be. I just love being out in nature, being active, and being with family and friends. In terms of adaptive sports, skiing allows you to be as much of an equal in terms of ability, speed, etc. as you can get in any sport. For a lot of sports you either do things separate from able bodied (sled hockey, basketball, etc.) or you are using your arms instead of legs (handcycling) so you are just a bit slower generally because of that. Skiing is the one sport (tennis is also similar) that you do in the same location and at the same speed as someone who is not in a wheelchair.
What was your most frustrating moment being in a chair?
I honestly don’t really know. I have taken some time to think about this and I really can’t come up with much. The one time that I can think of that I get really frustrated about being in a chair is getting on and off a plane. As I described above a bit I use a special chair to get onto a plane. This isn’t a chair I can wheel myself and there are designated people in the airport who are solely authorized to use these chairs (bureaucracy!). This also means that when they are not there I can’t get on or off the plane. Think about the frustration when I’m stuck on the plane because they haven’t gotten there with the aisle chair yet, I’m late for my next flight and can’t get up and walk down the aisle. That’s frustrating! At those times I take out my frustration on the fact that the people aren’t there to help me when they should be, but ultimately if I wasn’t in a chair I wouldn’t have to deal with that.
Dylan turns 2 in two weeks! I can’t believe I have a 2-year-old! The first year did not go fast, but the last year has flown by. Her biggest development continues to be her language. She is talking in 2 word phrases a lot more and working on doing some 3 word phrases. We keep encouraging her to use the sentence rather than just the words and she’s actually starting to get it (rather than “milk please” we have her say “can I have milk please” which ends up being “have milk please”).
Oh and the Easter Bunny. We went to an Easter brunch with someone dressed up in a bunny suit. She just stared at it and ran away for the first half hour or so, but eventually worked up the courage to give it a high five and eventually a hug. For the next few days she would tell everyone (including her teachers at daycare, we were told): “bunny, hug, high-five, Dylan”.