Joanna Buoniconti: Just because I’m in a wheelchair doesn’t mean I’m less thankful

  • Joanna Buoniconti SUBMITTED PHOTO

Published: 11/27/2020 9:04:43 AM

This year’s Thanksgiving looked a lot different for a lot of people — including me. While COVID-19 may have made getting together with extended family for bountiful dinners impossible, it only cemented my desire to sit in the quietness for a moment and reflect on all the things for which I’m thankful.

Because the truth is, I have a multitude of things to be grateful for, which I know may come as a surprise to some people. For as long as I can remember, whenever I’ve gone out into public, I’ve been the subject of people’s pitying stares. Ironically, the place where I have encountered this the most is in line to receive communion at church.

When I was younger, those stares used to annoy me to no end. And knowing this, my mom took to telling me, “You blow people away with your existence,” whenever I would vocalize my disdain for them. To which my younger self would always respond with a rendition of, “But why?” Because I have never wanted to be pitied and would argue that no one in my situation does.

Over time, I’ve come to realize that these instances of receiving glances of pity from both strangers and family members alike are just another unwelcome commonality that binds everyone within the disabled community together. It seems to have been threaded into people’s thinking that being confined to a wheelchair somehow makes your life unbearably sad and unfulfilling — which couldn’t be farther from the truth.

There is no denying that having a disability and being in a wheelchair makes life infinitely more complicated, but those facts have also made me value the important things in life at a very young age. They also forced me to grow up a lot faster than the majority of my peers.

Due to my neuromuscular disease, my health has always been precipitous and can easily be compromised if I don’t follow my medical routine to the last detail, on a daily basis. I can’t pull an all-nighter studying, or partying, without sending my body into some semblance of shock, and I’m all too acquainted with the terrifying feeling of not being able to take a breath of air because my lungs are capsized with mucus. I have been reliant on a ventilator to breathe more times than I can count — and in a year in which the pandemic has ricocheted across the globe, I’m more grateful for my health than I’ve ever been before. Because I know, more than most, it is never guaranteed.

A little over two years ago, I started on the first FDA-approved treatment for my disease. Prior to beginning this treatment, my life expectancy was estimated to be approximately 30 years, give or take how many bouts of pneumonia might weaken my lungs over the next 10 years. At 19, I’d been growing noticeably weaker by the day. But this treatment effectively changed the course of my life. It stopped the debilitating progression of my disease and has allowed me to gradually regain the strength that I had lost.

The treatment has helped to make my voice stronger and more intelligible, which also helped me to make more friends. I’ve always been a quiet person because I was inherently fearful of opening my mouth to talk and watching people’s eyes glaze over when they couldn’t understand a word I was saying. While the treatment hasn’t erased this fear completely, it has allowed me to come out of my shell and FaceTime friends when I can’t see them in person.

And more importantly, it has made it significantly easier for me to pursue what I love most in this world — writing.

In having a disability, it bears mentioning that a significant part of your identity consists of others’ perceptions of your blatant limitations. I’m extremely fortunate to have parents who relentlessly advocated for my needs and pushed me to follow my dreams, regardless of my limitations. I am entering into my last semester in college — a feat that many people doubted I would ever be able to accomplish. Most are noticeably astonished when I tell them that I am completing a degree in two intense writing majors.

Now, when I encounter pitying stares from others, it doesn’t make my blood boil with anger. Instead, I return their responses with a smile because I know the stares are rooted in ignorance. By choosing to smile, I hope to send the message that my life is full, despite my challenges.

And I’m grateful for the invaluable lessons those challenges have instilled in me.

Joanna Buoniconti is an English and journalism major at the University of Massachusetts Amherst.

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