“I remember the embarrassment I felt as I fell onto the hot, unforgiving gravel, with my books and papers scattering around me. Worst of all, I remember the laughter and snickers from a group of peers that had gathered, not to help me, but to laugh at me.
This has to get better. This will not be my life.
My name is Ashlee, and this is my story!
I am a young woman with Cerebral Palsy, a lifelong, physical disability that affects posture, balance, and muscular tone. I was also diagnosed with Hydrocephalus, a condition in which spinal fluid accumulates in the brain, (causing brain damage) at around 3 months old. I have lived with my conditions for as long as I could remember, and have always understood that perhaps I needed more care (I remember my family telling me that I needed to tell them when I experienced certain symptoms). My day-to-day did look a bit different from my peers: whether I was sick due to my VP Shunt failing (the device which is used to drain the extra fluid around my head), or just living every day as a child with a physical disability.
I do not believe, though, that my childhood was so different from my classmates or friends unless you’re describing the painful, orthopedic surgeries endured to correct the malformation of my bones. Or those ‘vacations’ from school which saw me at a Children’s Hospital for check-ups, follow-up care, or treatment options. For the most part, though, I credit my family and teachers with ensuring I had as typical a childhood as possible. One of the biggest differences I noticed is that my peers moved with much more ease than I did. They were also not at such high risk of falls; I do not remember many lunch or recess breaks that did not see me in the nurse’s office to treat a scrape or cut.
I do remember that despite those risks, I was able to participate in gym class without restriction. I played alongside my peers, which I think was important not only in terms of awareness but also in inclusion. When we were playing tag, I remember my gym teacher telling my classmates that they could ‘tag’ my arm but not my shoulders, to reduce the risk of pushing me over. Looking back, I appreciate this now more than I did then. I was the first student with a disability in my class, so I grew with my peers with as much normalization as possible for who I am with special consideration for what my body endures.
Though my classmates did not question my reality or circumstances when I was younger, I did not have the same experience as a teenager in high school. The understanding of the children that once was, eventually transformed into relentless teasing. I remember once we had an experiment in science class that required me to run a distance, but I no longer could. Cerebral Palsy particularly impacts people as they age. My teacher decided to give me a time that was ten seconds slower than the slowest time, to which one of my classmates responded, ‘She’s always using it to her advantage.’
This was one of the clearest examples I remember of someone implying that Cerebral Palsy did not impact my life as greatly as I suggested it did. It was pivotal, too, because it was the first time I became deeply resentful that I was dissimilar to those around me. That day changed me for years. I became angrier, more resentful, and it was around this time I began hiding (as much as I could) my reality—my uneven gait, my scars—and began to withdraw. I saw my conditions as reasons I would never be ‘normal’ and I hated that, as well as the physical vessel I inhabited. I felt betrayed by the peers that should have understood (though most did), and that seeped into everything I did.
I wish I could go back 10-12 years ago and embrace myself, and say that the very things I resented about myself would become what I would honor and celebrate a decade later. From 18 to 29, I was quite sick, consistently, because of the device that helps keep me alive. It was around my 21st birthday that I decided I was tired of not seeing more positivity for those living with my condition, so I began my blog: IAmMe. I wanted to use my own platform to share my story, heal, and maybe raise awareness. Never in my wildest dreams did I believe it would become my passion, life, and incorporation of advocacy and awareness.
Social media became a game-changer for me around that time, too. Yes, it did have its negative impacts (trolls, unlimited access) but for the most part, it opened me up to a world, a community that was diverse, inclusive, and so incredibly beautiful: the community of Persons with Disability and Chronic Illnesses.
Women like Jessica Ping-Wild and Chelsea Bear changed my life by living their lives so publicly. They allowed me to believe that I could not only survive with my conditions, but thrive, and it saved me. Realizing that I did not have to hide who I was allowed me to feel pride in everything that made me, me.
If I tell someone struggling with similar circumstances something, it would be: don’t lose what makes you different to be a part of the collective. Your identity, your experiences, and your abilities are unique, just like you! And the world needs you.”
This story was submitted to Love What Matters by Ashlee Brady-Kelly from Vermont. You can follow her journey on Instagram, Facebook, and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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