Every human has a story worth sharing and a voice that deserves to be heard. For World Cerebral Palsy Day, we asked our copywriter, Ash (hi!), if her boyfriend Ben would like to share his story about living with cerebral palsy. It took a lot of convincing, but he finally said yes;
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Before Ben and I started dating, I had a severely limited understanding of what it’s like to live with a disability. In fact, I didn’t even know he had cerebral palsy until six months after we met. That’s how observant I am.
In the early days of our relationship, I used to believe the many misconceptions people have about those living with a disability. I naturally assumed that because he only had full-function in one hand, he wouldn’t physically be able to accomplish many things.
But Ben is without a doubt the more adventurous one in our relationship. While I constantly worry about getting injured, he pushes me out of my comfort zone by organising kayaking trips, teaching me to climb cliffs, and driving us to the beach to snorkel and spearfish. While I tend to let fear hold me back from seizing new opportunities, Ben has never once let his disability stop him from living a fulfilling life.
I’ll never fully understand what it’s like to be in Ben’s shoes or live with a disability. But I’m learning never to underestimate what he’s capable of.
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As someone living with hemiplegia cerebral palsy (which only affects the right side of my body), physical restrictions are part of my everyday reality.
I can’t play the guitar even though I’ve always secretly wanted to. When I try on clothes, it takes me so long to do up the buttons, shop assistants often wonder if I’m trying to shoplift. And my arms spasm make cutting steak a dangerous activity for anyone sitting next to me.
But apart from the physical limitations, I’ve also had to wrestle with other people’s misconceptions and well-meaning assumptions of what I can and can’t achieve.
When I was in Grade 3, my school held its annual cross country run at a small park close by. Every student had to run a specific number of laps corresponding to their grade level - which for my classmates, was three.
A few days before the race, my teacher's aide walked me to the park to show me the track we would be running on. She kindly asked if I thought I could handle running one lap. When I said I wanted to run the same three laps as my classmates, she gently explained I wouldn’t be able to manage it because of my disability. At the time, I didn’t understand why I had to be held to a lower standard than everyone else. Even though I was different, I didn’t want to be treated differently. To me, I knew it would be a challenge, but I was determined to accomplish the same goal as everyone else.
On the day of the race, I started off running alongside the rest of my classmates but quickly fell to the back of the pack. While everyone else surged on ahead, I awkwardly trailed behind them, red-faced and exhausted. After I finished the first lap, my teacher’s aide jogged beside me and told me I could stop running - I had completed all that I was expected to do. But, determined to finish with the rest of the class, I ignored her and continued to run.
When the other mums saw I was one of the only students left on the track, they banded together to yell and cheer me on (“Run, Ben run”). It was like I was in my very own B-grade version of Forrest Gump.
I ultimately came in second-last place (the kid behind me had an asthma attack and had to drop out) but I was stoked to have finished. I had accomplished what I wanted to achieve.
After the race, I don’t remember feeling any different. I was still the same 9-year old kid who needed to wear a body splint to improve my posture and a special laptop to keep up in class. But finishing those three laps helped me break free of other people’s expectations and see what I was truly capable of.
I wish I could say I carried this same determination and courage throughout the rest of my life, but sadly the fear of other people’s opinions often won. In high school, a well-meaning compliment from a friend (“I think it’s great you still play sports even though you look funny when you run”) stopped me from participating in any kind of sport for a whole year.
When I look back at the rest of my teenage years and my early 20s, there have been countless situations when I’ve succumbed to the ‘restrictions’ others have placed on me. Even now, people often assume I need help carrying groceries back to my car, and it’s hard to make a great first impression at a job interview with a not so great handshake. But although I’m hyperaware of these misconceptions, I’m choosing not to let it stop me from reaching my goals, being the best person I can be, or from running as many laps as I want.
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World Cerebral Palsy Day is about coming together and celebrating the 17 million people around the world living with cerebral palsy. By continuing to share stories from people in our community, we hope to challenge the misconceptions commonly associated with disability so we can pave the way for a more inclusive future.
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