‘My head jostled and my neck cracked. Now I was blocking traffic. No one even tried to help.’: Woman details journey with CHILD Syndrome, ‘I turned moping into passion’

“You could almost make out the sun hiding behind the wispy clouds as the noon hour approached. Light snowflakes were falling, melting instantly upon impact on the pavement. I was smiling as I sped past my peers on the sidewalk. It was the second day of classes for my final semester of college, and I was buzzing with excitement.

As I made my way to class, I glanced at the people surrounding me, taking in the feeling of being on top. It felt good. It felt right. And I soaked in the feeling until reality came crashing down on me with a forceful, halting motion.

If you had told me two years ago I would be running a blog dedicated to disability advocacy, I would never have believed you. I’ve always adored writing, so the blog part on its own seems reasonable. But in the past, I always shied away from a very big part of my life: my disability.

I was born with CHILD Syndrome, a rare disease that affects only 60 people worldwide with skin and limb deficiencies on one side of the body. My case includes a shortened arm and leg on my left side, which are covered in blistering, red, flaky skin. Unfortunately, the combination makes wearing a prosthetic deeply uncomfortable, meaning my primary method of transportation is a wheelchair.

When I was really young, I remember not thinking much about how different I looked compared to the other kids on the playground. As I grew and entered the school system, though, things changed. I was the weird kid that had a fierce limp or worse, a set of wheels to ride around in.

Luckily, growing up in a small town definitely had its advantages. I knew most of the kids I graduated high school with before the age of 10. I was not constantly asked to lay out my medical history at the start of every school year.

The minute I left the comforts of my hometown was when I would immediately begin to feel the eyes on the back of my head. Trust me, they weren’t admiring my beauty. They were trying to figure out what was wrong with me. Some of the bolder individuals even felt compelled to ask. To this day, I still find myself triggered when an adult approaches me with a wistful look in their eye. Eye contact is almost always followed by a belligerent question.

Beyond the embarrassing level of attention that seemed to follow my every move, I was also frequently met with blatant ignorance and discrimination. Once I was old enough to recognize what was going on, I started to put up a fight. My efforts felt futile. Either the desired outcome was not reached or I was made to feel small as a result of receiving the necessary help I required. I was enraged but desperate to be liked by both my peers and my superiors. I made it my mission to cause as little trouble as possible. By shouldering the actions and remarks, I allowed myself to become the burden. As you can imagine, this did a real number on my mental health over the years.

Getting out of my hometown and beginning college at the University of Notre Dame felt like a dream come true until it wasn’t. Within my first semester, I had dealt with so many problems as a result of being in a wheelchair I almost gave up on my childhood dream school altogether.

I lost the accessibility battle but won the education war, crossing the finish line on time with my friends by my side. Before I was able to taste that sweet, sweet glory, though, I had one more cross to bear.

My head was jostled and the sudden stop had caused my neck to crack, leaving behind a deep aching sensation I knew would be an annoyance for the next few days. I looked down, confused, and meagerly unnerved. Stella, my trusty electric wheelchair was blinking her bright red eyes, the eyes of death, rapidly.

Anxiety instantly flooded my senses. Only about 5 seconds had passed and I could already feel the eyes glaring at me. I was blocking half of a major traffic channel between class buildings. Students were passing me on both sides as I tried to fiddle with the wiring on the armrest. A cold gust of wind suddenly washed over me, causing a tremor to move throughout my body. I felt exposed and helpless, and still, my main concern was making it to class on time. It was only the second day, after all, and first impressions are extremely important with professors. Dozens of students had passed me by and not one had asked me if I needed assistance. Most didn’t even break stride. They simply moved to the side and perfectly maintained the conversation they were holding before the giant wheelchair obstacle presented itself to them.

As I sat, shivering from anxiety and another gust of snowflake-filled wind, I wished for invisibility. ‘Out of sight, out of mind,’ as the saying goes. Even though no one had offered a helping hand, I was sure judgments were being made. So much for being on top.

My saving grace appeared seconds later. A friend of mine from the choir came up behind me and asked what was wrong, clearly able to tell I was in distress. I explained the situation and together, we figured how to turn the manual breaks off so she could push me to my class building. From there, I attended my class and used my lunch break to call the repair shop. It ended up being a long, drawn-out process, but everything ended up okay in the end.

Well, almost everything.

I began to spiral into a deep depression. The years of pain I’d suppressed were unleashed and I felt all of my feelings at once. It was a long time coming, but the embarrassment I carried from this one particular incident was one step past my limit. I could no longer be the burden without losing myself completely in the process. After sulking for a few weeks and listening to my friends’ declarations of concern, I picked myself up and went to visit the University Counseling Center. I believe in the power of therapy but if I am fully honest with you all, no amount of talking was going to help my condition unless I did the hard work change was going to require.

I did the meditation exercises and I practiced the confidence-building techniques, but what really shifted my attitude was not airing out my feelings. It was my inner realization I was valuable simply for being alive.

You see, my moping eventually turned into anger, which quickly transitioned into passion. I decided the only way I could prevent another depressive episode from happening was to face my disability head-on. It was time to unlearn the belief I was a burden and remind myself that lack of accessibility, education, and understanding were the real problems. Lucky for me, all of those are fixable points.

I began talking about my experience with what I now know is ableism. My personal conversations with close friends quickly turned into biweekly Instagram captions as I aimed to educate a wider sphere. Not even 3 months later, I launched my disability advocacy blog.

It’s been a year since I began actively standing up for both myself and for disability rights as a whole. Lots of learning and unlearning have taken place and will continue to take place for years into the future. Systemic ableism isn’t going to disappear overnight, but I am proud to be working towards a more educated and inclusive society. ”

This story was submitted to Love What Matters by Jessica Ping-Wild from Pontiac, IL. You can follow their journey on Instagram, Facebook, and their blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.