Redefining Disability Challenge – Question 9

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.

Crocheting on the train to New York City.

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.

Mohawk River Boar Launch
Once the snow is gone, I enjoy walking down to the Mohawk River with my camera.

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.




Redefining Disability Challenge – Question 8

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the eighth 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:

Is your family life affected by disability? In what ways?

I was born with my disability, so of course it has impacted my entire family. When I first thought about answering this question, I wondered what my family members would say. What is their impression of how our family life is affected by my disability? What have they learned? How have they changed over time?

I come from a large Italian-American family, a cultural background where family is more than parents and siblings. Cousins, aunts, uncles, nieces and nephews – we’re all family. I also believe friends are family you make for yourself. I am not the only member of my family (birth family or created family) who lives with disability. Down Syndrome, epilepsy, diabetes, lupus, depression, and other mental and physical disabilities – they are all present.

If you are a regular reader of this blog, you know I have five older sisters, four of whom are still living. For this week’s challenge, I asked each of them to write a paragraph or two about having a sister with a disability, and how it has influenced their view of the world. Here is what they had to say. I kept their words, even though some of them cause me to blush, but I did edit for space and clarity, and to reduce repetitions.

From Caroline:

Since I am closest to you in age I was very aware from the beginning of your need for modifications. Your frequent falls and stumbles bothered Mom terribly. She always felt so bad to see you struggle. Mom and Dad made every attempt to help you in any way they could.  They made plans to install the ramp on the back of the house because they knew you would need it eventually. They encouraged you to participate in everything.

You really began opening our eyes to the need to boycott restaurants or events that weren’t “user friendly” or accessible. Through you, we all became more aware of the needs of several types of disabilities, not just wheelchair users. When we built our house in 2008, we made sure there was a ramp out front for access, 36-inch wide doorways, as well as raised toilets and bars in the showers.  Like you have always said, someday we might need the modifications ourselves.

From Susan:

I was in college when you were born and got married the following year, before you turned one, so I never had the pleasure of spending time with you as a child as a sister would. When Mom and Dad received your diagnosis, I was beginning a family of my own and felt somewhat detached from all that was happening with you. I spent a few weeks living at Mom and Dad’s right before my son was born and then I started to get a glimpse of the reality of what life might be like for the three of you.

I feel that I have always been one who seeks to understand, but it has only been since my attendance at the Ms. Wheelchair America pageant held in NY in 2005 that I started to grasp what your everyday life might truly be like. Spending more time with you over the years has continued to increase my knowledge and awareness and I like to think it has made a difference in how I accomplish my work and in my tolerance of others.

From Donna:

When you were little, I felt I needed to help you out all the time. I learned you would tell us if you needed help, and only when you asked would I help. Although you had grown up, I would still worry about you – like when you called me to tell me you were in New York City for New Year’s Eve.

Your experience makes me look at bathroom stalls differently, thinking of you and wondering if both of us could “maneuver.” In fact, I try to look at all access points for the disabled. I consider emergency access where I work, particularly when the elevator was recently inoperable for a couple of weeks. Having a sibling with a disability has made me more compassionate to others, understanding it sometimes takes longer for a some people to move around their environment.

Because of you, I am not hesitant to approach a person with a disability and ask if they need help. Many people are afraid to do this. At a previous job, I helped a girl with cerebral palsy fill out her application because her hand shook. She got the job and we had an excellent working relationship. I felt good because I asked first, and she said yes.

From Sandy:

I think Mom and Dad struggled early on with how to prepare you for the future—even looking at how the school could be more accessible. I am sure they have had concerns at each milestone—sleepover summer camp at a young age, school, exchange program to the other side of the world at age 16, college, work, etc. In all these situations, you showed us all you could thrive and excel. You opened our eyes about the decisions you must make daily, including finding accessible bathrooms, shops, housing, restaurants, clothing, etc. Life can be difficult—for all of us—but you maneuver through the maze of finding places that welcome you and allow you to enter, daily management of personal care assistants and ongoing considerations so that you live every day fully.

I don’t define our relationship by your disability. We have always managed to find fun at outings and on trips just as any other two sisters might. My children have grown up having an aunt with a disability and have always seen the wheelchair. So for them, acceptance of your diagnosis and abilities has always been a part of their lives and they have seemed more open to being around others with similar disabilities.

Your disability and awareness of the medical and clinical world has been an asset for our family when various family members have had to deal with disabling surgeries or a difficult diagnosis. We have all leaned on you during these times and your insight and experience has guided us through some challenging events and decisions.
My lovely sisters, long before I was thought of.

30 Days of Thanks Day 16 – My Nephews

Last Thursday I wrote about my nieces and today, in honor of my nephew Joe’s thirtieth birthday (HAPPY BIRTHDAY!) I get to brag about my nephews. I appreciate their patience.

My five nephews – Chris, Joe, Daniel, Josh and Randy – are intelligent and creative young men. Some are married. Some are fathers. They are curious and adventurous – all but one traveled internationally before the age of 25. I’m sure Randy will join the others in travel given time.

One of my mother’s often stated lines about raising children is “Boys are different than girls!” My sisters, well versed in female relationships, have raised strong young men who display empathy for others and respect for all. They are courteous and kind. Chris coaches young soccer players. Joe serves in the National Guard. Daniel embraces all cultures and lived on four continents between the ages of 17 and 19. Josh is a talented magician and astounds us with his slight of hand. Randy, a spiritual young man, just started taking classes at a community college while working for a faith-based charity.

Because I was not much older than my oldest nieces and nephews I have usually been seated at “the kids’ table” – or ‘the island of misfit toys’ as Chris calls it – for holiday dinners at my parents’ house. I was in my twenties before I had seating at the ‘grown up’ table, and only because there was no way I could get to the kid’s table in my wheelchair. But those dinners with my nephews at the kid’s table were some of the best conversations! We got to be silly, and tell stories the grown ups may not have approved. I heard their opinions about issues important to them.

Like my nieces, I’ve learned a great deal from my nephews. Thanks to Chris, I know it takes four revolutions of my parents’ driveway on a tricycle to make yourself sick after Easter dinner. Joe taught this Devil’s fan how to love a Ranger’s fan. Daniel taught me the wonder of helping a child learn his first words. Josh taught me the value of being a patient listener while having conversations with young men. Randy taught me the importance of covering a baby with a cloth while changing a diaper. These important lessons, along with many others, have served me well and I am grateful to my nephews for being instructors even if they had no idea it was happening.

I am proud of these five young men – for the gifts you share with the world and those around you. I hope you continue to realize how “the aunts” love and appreciate all you offer. I am grateful for the smiles and joy you bring to us.

30 Days of Thanks Day 13 – My Nieces

Being an aunt is one of the most fun jobs in the world. I have the good fortune to have ten nieces and nephews call me Aunt Denise. I’ll get to my nephews on another day – today is all about the five ladies who are my nieces.

Some are mothers. Some are teachers. Some are athletes. Some are wives. Some are activists and raise awareness for causes and charitable organizations important to them. They are all talented, creative, kind, beautiful women. I may be biased in my opinion but I think I am not far off in my praise.

Aunt Denise
With my niece Erin. Photo – Sandra DiNoto

Due to the large age range between me and my older sisters, I was an aunt at a young age. My oldest nephew was born when I was four, my oldest niece just a year and a half later. I was used to playing with older people, but with my nephews and nieces I gained playmates who were closer to my age. My nieces let me brush and style their hair and paint their nails. Together we would read books and color with crayons. We played dress up and house. I taught them board games and though I didn’t know the name for it then, they were teaching me behavior management and child development.

Aunt Denise & Sara
Posing with my niece Sara. Photo – Sandra DiNoto

When I was in college studying to be a speech-language pathologist I realized how fortunate I was to have exposure to young children while growing up. I could relate to the theory I was learning in class because I had memories of my nieces reaching those milestones. Sara and Karen, who lived close to college, were conscripted as subjects for my friends and I as we practiced administering language tests. Of course they passed with flying colors and followed directions better than any student I ever tested “in the real world.”

Karen & Jenny
My nieces Karen and Jenny.

Erin, Casey, Sara, Karen and Jenny, make me proud because they are young women who make a difference in the world. Erin (who is celebrating a birthday today) champions animal rights and works for an agency that supports people with disabilities. Casey fights for improved treatment for birth defects and premature babies. Sara and Karen are committed teachers, influencing children in their classrooms. Jenny is a single mother dedicated to doing the best she can for her own daughter. Their strength is a testament to their mothers, my very strong sisters. I see the best of my sisters in their daughters. I imagine my own aunts may feel the same about me and my sisters.

Aunt Denise & Casey
With my niece Casey at her wedding. Photo – Sandra DiNoto

I am grateful to my nieces for all they have taught me through the years. I appreciate their patience with me as I learned how to be an aunt. It helps when you have nieces who accept you for all your quirks and know you love them in return.

P.S. Nephews – as promised your turn is coming. One of you has a birthday this month too….