Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the ninth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later.
Here is this week’s question:
Are your leisure activities or hobbies affected by disability? How do you work around this?
I am always telling people “I am more than my disability, more than this wheelchair connected to my butt!” But the truth is, almost everything I do in life – the clothes I wear, the amount of liquid I consume, the vehicle I drive, the cell phone I use – is influenced by my disability and the mobility limitations it creates. Because I rely on others to help me perform daily living tasks, my time is not always my own. I’ve written about the joy of “found time.“ Some people describe this time as “leisure.”
Brigid Schulte, author of Overwhelmed: Work, Love, and Play When No One Has the Time, describes leisure using a Greek definition: it is the time to refresh the soul. When I do have time to myself, I try to engage in activities which refresh my soul.
I love reading. I love to crochet. I do both, simultaneously at times, thanks to audiobooks. I am less apt to break speed limits when I listen to books rather than music while driving. Something about singing along to music makes me want to drive faster, and it makes my tolerance lower for the idiots who seem to surround me on my commute.
I usually have a crochet project in a tote bag on the back seat of my van. If I get an unexpected pocket of time while I am away from home, I am not shy about taking out my yarn and completing a row or two. This works best with patterns which don’t require careful counting. I regularly crochet in public, and many friends have taken photos of me crocheting on the train, such as this one taken by my friend Tara last January.
I also enjoy volunteering and being active in my community. For the past eight years, I have served on the Alumni Association Board of Directors for my alma mater, The College of Saint Rose. I am a Rotarian and have fun participating in service projects with my club.
When the weather is nice, I try to be outside in sunshine as much as possible. The warmth makes me feel energetic. My muscles have always performed better in warmth and it is physically easier for me to move when I am warm. There are several local parks with accessible trails. I enjoy taking my camera and seeing what I can discover on a walk in nature.
I cannot imagine my life without music. I have always been a singer, and knew all the words to songs my mother did not agree with at a young age. My sisters laugh about the time I sang The Devil Went Down to Georgia word for word at age five. My mother did not think it was as cute as my sisters did when I sang, “I done told you once – you son of a bitch – I’m the best that’s ever been!”
I taught myself to read music shortly after I began to read printed words. I started violin lessons a month before my fifth birthday. Piano lessons were added when I reached third grade. I played percussion in the school band until eighth grade when the teacher said he needed bassoon players and offered my friend Allison and I the chance to leave the percussion section to join the woodwinds. I studied music theory and history, convinced I would become a music teacher or a music therapist.
It turns out, music was never meant to be a career but it remains crucial to my soul and well-being. So many of my memories are entwined with music. There are playlists on my iPod for important people and events. One of the largest playlists is titled “Broadway.”
I love musical theater. I have a subscription to the Broadway tours at a local theater. I try to make it to New York City at least once a year to see a show, more if possible. If I could, I would spend every Saturday afternoon in an audience, watching actors transform into characters, listening to the music and getting lost in the show.
These leisure activities enrich my soul, fill me with wonder, and energize me. I can’t imagine wanting to do anything different if I did not have my disability.