Being Disabled in Public School
Recently I discovered the beautiful Jessica Kellgren-Fozard on youtube (seriously have you seen her? she’s gorgeous) and I watched her video on being disabled in school. While she lives in a different country and our stories are different, her video really resonated with me. When she spoke about feeling invisible among the other students, I knew exactly what she was talking about. All I wanted to do was reach through the screen and give her a huge hug.
Her video, plus the fact that it’s ‘Back to School’ season already, got me thinking about my years in public school. I’ve been disabled from birth. I never had to deal with the transition from abled to wheelchair user, something that I know is difficult for a lot of people. It’s just who I was and how everyone always knew me growing up.
A lot of people are adamant in the fact that their disability doesn’t define them. I respect that belief, but for me personally, I’ve always felt like the opposite is true. It’s the first thing that people notice about me. It dictates who will talk to me or who won’t, where I can go, and the list goes on. I learned this as a child and it absolutely shaped my school years.
In elementary school, I had no problem making friends. It probably helped that having me in their class benefitted the other students. I had a metabolic disorder, I don’t have a name for you because the doctors were never able to give me an official diagnosis, but it caused me to dehydrate scary fast. Because of this, my teachers were required to let me have a snack/drink in the middle of the day. That also meant my teachers had to let all the students have a snack, too. Otherwise, they would have had a jealous meltdown from every other kid in class.
I also vividly remember kids bickering over who got to help me with random tasks like carrying my books, pushing my chair, etc. Their excitement to help was only sweet but it disappeared after around 2nd grade. I was never the most popular kid in class, but people liked me and I was comfortable enough in my environment.
One of the biggest standout memories of elementary school for me was PE class. My brother, a couple other students, and I had an adapted class with the gym teacher. Her name was Mrs. Vance and I loved her. Like, invited-her-to-a-family-event-once loved her. I don’t even remember all that we did, I just know it was basically the only time I ever had a PE class that actually included me in a meaningful way.
In the 5th grade, I moved three hours away to another small town that was right outside of Maryland. I made a best friend almost immediately. She sat next to me and invited me to her birthday party, and we were basically inseparable from that point on. Everyone else was nice at first, and I had a small group of people to sit with at lunch, but that was about it. I was happy with my one best friend, though.
That lasted about a year. My small group of friends all decided, at the same time, to no longer be my friend because I was ‘boring,’ At first, they just started to avoid me. I wasn’t sure what was going on, so I confronted them and they told me that every time we hung out it was the same. I couldn’t run around and be spontaneous like they wanted to be, so I was out.
It sucked, but shortly after I moved to Florida and started a new middle school. I found it really awkward and hard to make friends beyond basic acquaintances. Kids would be nice one minute and then make fun of me the next. One girl, in particular, criticized what I wore on a regular basis. My jeans were ugly because they were from Walmart. I couldn’t wear Vans because I obviously couldn’t skate. She could find something wrong with every outfit. Another kid thought it was great fun to bump my joystick just as I’d pull into my desk so I’d go flying into the one behind me… over and over again until I’d get yelled at for disrupting the class.
My new PE class was a joke. I occasionally played with bean bags while teenagers treated me like a toddler. They got a pat on the back for volunteering to play with the ‘special needs’ kids. I just wanted to get away from them.
Eventually, I got to the point where I hated going to school so much that I’d pretend to be sick about once a week so my mom would pick me up early. She knew I was faking, the school knew, but they never confronted me about it so home I went.
In 2005 I had my spinal fusion surgery. I was in the hospital for a week, but it took months to recover so I ended up finishing middle school from home. They gave me a little phone and a headset, and every day I’d call my teacher. There were usually about 3 students on the line, and we didn’t do much other than reading from the textbook, so I spent a lot of time playing Tetris and scrolling through Myspace.
Finally, I started high school. There were around 2,500 students at this school, which felt enormous to me, and there were a few dozen disabled students as well. Most of them weren’t mainstream, so they were in smaller classes depending on their needs both physically and educationally. Even though I was mainstream, I spent all of my free time in the PI (physically impaired) classroom.
Every morning, every break, every lunch was spent in that room. The only time I was technically required to be there was for PE class, and boy, what a time that was. My favorite activity? Driving around the track. Yep. Literally just driving my power chair in a circle.
I had extremely mixed feelings about the PI classroom, but most of them were overwhelmingly negative. I hated the way I saw the other kids treated. They were handled way too roughly, screamed at for no reason, and often they were even ignored. I also hated how the aides, and some of the teachers, would openly complain about the students and their needs. The classroom had its own kitchen since many of the students had special dietary needs and ate in the room. That’s where you would normally find the adults. It was always abundantly clear that they were only there for the paycheck. The school wasn’t all that picky because most of the new staff would refuse to work in that room, something one of the teachers flat out admitted to me.
Still, it was a quiet space safe from the rest of the school (no one came in there unless they had to) so that’s where I went.
In high school, I was fully dependent on having an aide with me all day. I couldn’t open doors, carry books or get things out of my backpack, or get situated at my desk on my own. Technically the school was accessible, but it definitely wasn’t set up in a way that I could be independent.
Freshman year, the school didn’t assign me a ‘one-on-one.’ Instead, the different aides from the PI room took turns taking me to class. The problem is they always forgot me there, too. Most of my teachers would become annoyed and call them. On a good day, they aide would show up 10 minutes later and laugh it off. My geography teacher was always just as upset as I was, so he started walking me to the next class. I wish I could remember his name because I’ll never forget how nice he was. He was one of the few adults I trusted that year. While others accused me of asking for more help than I needed, he looked out for me and defended me.
Sophomore year I finally had an aide assigned to me who stayed with me all day. It made the students want to talk to me even less, but at least I could keep up with my classes and I got along well with her. I figured she’d be my aide until I graduated, but early junior year, she quit and no one told me for two weeks. I just thought she was out sick. When I finally found out, I felt abandoned and lost even more trust in my school.
My next aide, and the one I had until I finished high school was the sweetest woman. I’ll be honest – she wasn’t the best at her job. She’d bring the wrong books and forget my schedule. Sometimes she was a little awkward and a little distracting as she tried to chat with everyone around her, but she genuinely cared about me. I was an angsty teenager and I just wanted things to go smoothly, but I tried to never let her see when I was upset because I knew how hard she was trying. She was one of the only people who cared about her job and what she was doing, and I appreciated that.
I was lucky because I never bullied in high school. I was anxious all the time and hated being at school for a million other reasons. If anyone had been aggressive towards me, I honestly couldn’t have handled it. Kids would sit with me in class and work with me for group projects. There was a handful who’d make small talk with me sometimes or wave when they saw me in the halls, but it’s not like we ever hung out outside of school or anything.
In 10th grade, I met Sarah, who is still one of my closest friends. She has Spina Bifida and we met in the PI classroom, but we didn’t have any classes together so I only ever saw her during lunch if our schedules happened to line up that way. There was a girl from my neighborhood and we used to talk on the bus ride home, but she wasn’t in the same grade as me so we never saw each other during the day.
Senior year I took yearbook class and I became pretty close with one of the girls in there. We always worked on our assignments together, and by working, I mean tried to find each other on Omegle. We lost touch after high school, but she made that year bearable for me. I’m thankful for her and I hope she’s doing well.
I know that in the grand scheme of things, I’m lucky. So many disabled students get less help than I did and get bullied much worse. I had the privilege of being a white girl from a nice neighborhood. I had a mom no one wanted on their bad side to keep things from getting too awful for me. That’s not the case for everyone.
There’s a lot of room for improvement when it comes to disabled students in public school. No kid should ever be accused of asking for more help than they need. Students should never be left alone in the hall crying because they don’t know how they’re going to get to their next class in time. They should never have anything less than a fully accessible school that gives them the same chance at success as every abled student, and we’re not there yet.
If you’re disabled and in school right now, fight for what you need and deserve. Don’t let adults tell you you’re faking so they don’t have to deal with you. Don’t let yourself fall through the cracks. Your need for accessibility and help isn’t a burden, it’s your right. You’re capable and wonderful and you’ve got this. I believe in you!