I have mild cerebral palsy that affects my left arm and leg, which isn’t necessarily uncommon. What’s far less typical about my experience with cerebral palsy, though, is that I don’t fit neatly into others’ expectations of what someone with cerebral palsy is “supposed to” look like. I don’t use mobility aids or walk with a pronounced limp, and if I didn’t tell you that I have cerebral palsy, you might not even know that I’m living with it. That’s where my disability experience becomes complicated. People will often voice their shock about my medical condition or say that I don’t look like I have cerebral palsy, and while this is presented as a compliment, to me, it usually feels invalidating.
I grew up visibly physically disabled, and while having constant proof of your disability has its occasional perks, at the time, I despised it. I felt like people saw me as disabled before they saw any of my other qualities, and it hurt. I wanted so badly to be able-bodied because able-bodied people aren’t typically met with stares and intrusive questions about their medical histories.
I also struggled with the emphasis on functionality that’s so prevalent among medical specialists. I wanted to look as able-bodied as possible, but I was also keenly aware that setting my body up to “do more” implied that there was something wrong with living in a disabled body in the first place. Eventually, I would learn that presenting as able-bodied isn’t a cure-all for years of internalised ableism, and it also comes with unintentional invalidation.
I’d always wanted to present as able-bodied, and if no one saw that I wasn’t, I could shove my disability in the background, where (I thought) it belonged.
After an orthopedic surgery and years of therapies, I hit my preteens and discovered that people no longer stared at me when I walked or asked me disability-related questions. I could still feel the tension in my muscles and overanalyzed every step I took, but no one else seemed to see me as disabled. As a 12-year-old girl who knew nothing about internalized ableism and just wanted to fit in, this was a dream come true. And on the rare occasion that I had to share that I have cerebral palsy, I’d often hear that it was unnoticeable or that I “walk really well for someone with CP,” which calmed my nerves and felt like the ultimate compliment to my younger self. After all, I’d always wanted to present as able-bodied, and if no one saw that I wasn’t, I could shove my disability in the background, where (I thought) it belonged.
Related: 12 Common Words and Phrases You May Not Realise Are Ableist
I spent nearly a decade clinging to the mindset that pretending to be able-bodied was the key to finding balance between showcasing my strengths and vaguely acknowledging my disability, but as time wore on, my perspective began to change. I began to open up about my experience as an able-bodied-presenting disabled woman and learned to make peace with the fact that I am living with a disability. It was incredibly freeing to live more authentically than ever before and truly begin to confront my internalized ableism for the first time in my life.
But while I was unapologetically disabled, I still looked able-bodied, which led me to notice a slightly upsetting trend – when I disclosed my cerebral palsy, I was often disbelieved unless my disability had begun to “show.” And often, this reaction came directly from medical professionals, which made me feel fraudulent and uncomfortable discussing my symptoms.
Although I spent years loving hearing “you don’t look like you have cerebral palsy,” framing my disability in that way no longer resonates with me.
Suddenly, what once seemed like a compliment prevented me from having my symptoms taken seriously and receiving the help I needed. There was the doctor who insisted that I don’t expend more energy than an able-bodied person because I “walk fine,” even though I’d always had a fast metabolism and constantly felt exhausted. There were the times when I worried that I couldn’t ask anyone for help until they noticed my symptoms because otherwise, I might be regarded as excessively needy. And there was the moment in the hospital when a doctor asked me about my medical history and gratuitously remarked that “you don’t look like you have cerebral palsy.” It’s sometimes tempting to push back in those moments and assert that my condition affects me more than most people think, but I usually stay quiet because I don’t want to be deemed “angry” or “overly sensitive.”
Although I spent years loving hearing “you don’t look like you have cerebral palsy,” framing my disability in that way no longer resonates with me. The honest truth is that anyone who’s ever uttered that phrase is typically well-meaning, and they’re completely spot-on – I don’t fit into many of the perceptions people have about cerebral palsy. But cerebral palsy, just like any other condition, doesn’t have a specific “look” attached to it, and the rhetoric of not looking disabled comes with invalidation both inside and outside of the medical field.
So no, I don’t “look disabled,” but please don’t use my able-bodied appearance to negate the physical challenges I face as a woman with cerebral palsy.
