I wrote about my amazing parents last year to start my 30 Days of Thanks. My mom, known as Dolly, and my dad, Sam, deserve recognition once again this year.
I am the person I am today because of the lessons, gifts and blessings bestowed upon me by my parents. Their belief in my abilities and encouragement helped me set and achieve goals.
Back in 1990, when I told them I wanted to be an exchange student, I never considered the fact they might have said no. I was sixteen, and needed their permission to pursue this dream. But since they had never said no to any dream of mine before, I did not really think about what I was asking them to approve.
Who lets their sixteen year old disabled daughter go live on the other side of the world for a year? Sam and Dolly, that’s who.
Granted, they didn’t make it easy by saying yes right away. The agreement we made was they would consider it, but I had to find a way to pay for the trip without touching the money in my college savings account. I was working a couple of afternoons at a local dressmaker’s shop. I spoke to my boss about my intent to travel and took on an extra shift to help earn additional money.
After a few months, when I started to attend the outbound exchange student orientations, they told they would sign the permission paperwork. In my teenage naivete, I questioned why it took so long for them to decide. It wasn’t like I was going to be completely on my own. I was going to stay with Rotarians – what could go wrong?!
Now that I am an adult, I have a better understanding of their fears and apprehension. I was (still am) their baby, the youngest of their six daughters, and I had a disability. Of course they were nervous! I wasn’t going to be two hours away at college. I was flying 14,000 miles away, quite literally half way around the world.
But they let me go.
Both of my parents shed tears when we said goodbye at the airport. Mom was full on crying, hankie pressed to her face, shaking as she gave me a hug. Dad was silent, a single tear escaping down his face. Cheeky me, all full of anticipation and excitement, told them not to worry. I would be alright. I would write every week. I knew right from wrong and would follow the rules. I promised not to do anything which would get me sent home early.
Eventually, they stopped hugging me. Dad put his arm around Mom, pulling her into his shoulder. I remember what he told her.
We didn’t raise her to keep her home Doll. We have to let her go.
Mom and Dad, I appreciate you giving me the confidence to go, to live, to say yes to life. You have given me so much love and taught me the value of working to fulfill a dream. Twenty-five years ago you said yes when I had this absurd idea that living in another country would be a great adventure, even though you were worried about me. You continue to offer me support when I try new things and pursue new goals. Thank you for encouraging me to advocate for myself and for trusting me to succeed. I love you.
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.
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.
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.
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.
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.
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.