Cerebral palsy at university: Sophie reveals an unexpected lesson

Cerebral palsy at university: Sophie reveals an unexpected lesson

“Goodbye, little apartment,” I said as I crossed the threshold of my student apartment for the final time. Sadness had constricted my throat to the size of a straw. “Thank you for teaching me so much.” Everyone gets attached to their first place – it’s practically a rite of passage. But for me, the attachment was more complex.

I was born three months early, which led to my having Cerebral palsy, a neuromuscular disability. The type of Cerebral palsy I have affects my lower body and makes walking difficult, so I use a scooter and walker to get around. Despite many struggles, I’ve been lucky. I’ve had excellent care from specialists and therapists at some of the best hospitals in New York City. I’ve attended mainstream schools and progressed academically at the same level as my able-bodied peers, and I have an incredibly supportive family.

Still, when you live with a disability that makes a variety of physical tasks challenging it causes many people to doubt your abilities. I knew I could achieve my goals, but I didn’t know how or when. I longed to be independent and self-sufficient, go to classes, run errands without my aide, and have my own space.

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 When I got into Columbia University’s Graduate School of Journalism last summer, I decided it was the perfect time to bring my dreams of an independent life into reality. I stopped working with an aide and started preparing for more self-reliance. I spent a lot of time in Occupational Therapy thinking about tools I might need to make life easier and how I would accomplish seemingly simple tasks. Putting shoes was a big one since my Cerebral palsy makes it harder for my muscles to respond to what I ask them to do, like bending my toes. I also had to make sure I brought the right clothes: no zippers, hooks, or tiny buttons.

As move-in day approached, I scoured Ikea for the right furniture: pieces that were sturdy enough to hold onto for balance if necessary, easy to transfer into from my walker, and–most importantly–chic enough to fit into the apartment I’d imagined. And I found the perfect James Dean poster.

Having my own apartment was both challenging and satisfying. During my first month there, I slipped in the shower and had to pull myself back up with the handrails—and a lot of swearing. Another time, I burned my legs with hot tea because I was driving my scooter with one hand and holding the paper cup with the other. After that, I got a cupholder. Then there was the evening when I just couldn’t get out of my rain boots (thanks, stiff feet). I couldn’t pull my jeans off over them because my muscles had gotten so tired from the effort, so I had to sleep in my clothes.

There were plenty of fun times, too, like having friends sleepover and eating Insomnia Cookies until midnight, or even getting new kitchen towels from Home Goods. Yet the simplest, most mundane aspects of living alone were by far the most satisfying because they were things my younger self couldn’t possibly imagine doing without help.

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I relished going to the mailroom to pick up packages, or ordering dinner and opening the door myself. Whenever I went to the deli across the street to get some milk, or headed back to my apartment with Duane Reade bags full of paper towels, school supplies, snacks, or shampoo, I was filled with a great sense of accomplishment. I even looked forward to doing chores like tidying up and mopping or organizing the fridge. My favorite thing was coming home from class, making a cup of tea, and sitting on my couch listening to an audiobook or watching YouTube.

Although I was generally self-sufficient when I lived with my parents, there was almost always someone nearby to help me reach something, tie a shoelace, or open a door. That wasn’t always the case at my apartment, so I learned to be even more self-reliant. I figured out how to use my scooter to push open doors, learned to use tools to help me reach things on high shelves, and tossed my shoelaces in the trash. I didn’t realize it at first, but I would have never discovered my inner resourcefulness had I not seized the opportunity to live on my own.

Independent living was tricky and sometimes scary, but the satisfaction of everyday tasks outweighed all the frustration. Living alone slowly helped redefine my self-image. Before moving in, I sometimes felt like I had too many special needs to even think about living a “normal” life. That feeling was easy to push away in theory but was hard to ignore in practice. My first apartment did me a favor I’ll never forget. I was so used to doing adaptive things, living differently from my able-bodied peers, that I forgot the multitude of ways in which I was just like them. Living on my own reminded me of that.