education & ableism: an incomplete journey

When I was in kindergarten, a substitute teacher yelled at me for taking too long to eat a snack. Knowing that I had already given myself insulin and that it was very dangerous for me to stop eating. I told her, “I have diabetes. I have to.” I remember clutching a tiny bag of brownie bites as she looked me dead in the eye and said, “I don’t care. Throw them away.” I cried, but I complied. That was only the beginning.

Fast forward to middle school. I’m about to get inducted into the Junior Honor Society, so I’m standing in line in the auditorium for the ceremony rehearsal. I’m smack in front of two ignorant, privileged boys who happen to think they’re the greatest people on the planet, and I’m surrounded by brainy snobs at just about every other angle. I try to avoid the call, but my body is begging me to test my blood sugars. My hands are shaking and my vision is blurring. So, I check myself, despite the funny looks. Of course, I’m making my way into diabetic shock. I start sipping juice immediately in an attempt to remain upright. Alas, no amount of sugar can hit my system fast enough to make my legs the kind of strong they needed to be to keep holding me up. I sunk into the itchy red chair behind me, urging myself not to feel defeated. Of course, that’s very hard when the cowards behind you are kicking your seat and whispering. Struggling, I managed to make out one of the words in the exchange; “disabled,” followed by a snicker. “I can be disabled too,” one of them said, sighing as he leaned back into the reserved seat. “If the sick kid gets to sit, I do, too.” Angered to near paralyzation, I rose slowly from the seat, crushing my juice box in my hand.

These incidents kept repeating with higher frequency and more ferocity. Teachers blamed me when I fainted, or told me that I looked fine when my nervous system was under attack. Lots of little blows scattered themselves about. It didn’t take long, though, for these little blows to grow big enough to knock me off my feet.

In high school, I had to turn to a homebound education, as I was too ill to make it through an entire school day. Since my autonomic nervous system (ANS) doesn’t function correctly, I have a lot of issues with short term memory. This made school hard, especially in between climbing flight after flight of stairs hourly. I’d make it to class out of breath and with little time to ask my teacher what I was behind on (because, believe me, there was always something). By the time I got home at the end of the day, I’d be so weak that I’d collapse on the floor in tears. I once voiced this to a kindhearted teacher of mine, and her response was simply, “and you haven’t yet called an ambulance?”

The homebound system, however, was less than forgiving. I had 2 hours weekly to get approximately 10 days worth of schoolwork done. Not only was this my only option apart from dropping out, but it was incredibly difficult to manage. Imagine having a consistently oxygen deprived brain, a body that constantly hurts, eyes that barely work, and piles upon piles of papers to turn in. That was my life on the daily. On top of it all, I had to be exposed to people and environments that were epically emotionally triggering. The only thing getting me through my freshman year was my hope for the summer.

That June, I was scheduled to begin IVIG treatments, which were beginning to look like my last shot at health. I daydreamed about having months to focus on my healing as I was forced into the vicious cycle of ableist schooling. Having to focus on my studies while my body was screaming for help was torture for me. I had to watch my health deteriorate before my eyes, and all I could do was wait. Had I not persisted, I might still not have moved on to my sophomore year.

Despite my handing in work on time and slaving so that I could be ready for finals, my teachers back at the high school still insisted that I either do summer school or repeat the year. In my mind, I envisioned graduating late and my peers moving on without me. I envisioned longer than three years trapped in that system. That absolutely broke me inside. So, on that May afternoon, I started crying in front of my homebound tutor. “I need to take my finals so that I can take the time to get better. If I don’t get this out of the way, I’ll never be able to focus on me.”

I thank God every single day that my family & I made sure that I would finish the year on time. Not so that I would graduate alongside the friends that, yes, have mostly forgotten about me. Instead, so that I could have the summer to focus on treatments and my healing. Though IVIG ended up not working out for me, I had better days than I had in years because of it. It was not a long term answer, but it offered me better moments. Those moments gave me the opportunity to get to know and love myself all over again. Taking the summer for myself was the greatest act of self care I have ever committed.

When the IVIG stopped working this year, however, I was left short of options. I remembered the mental and physical stamina it took to constantly cram every lesson as a homebound student, only to make grades I knew I could improve. I knew I lacked the energy and the patience. Gutted, I spent months this past autumn with no education. This left me incredibly behind on my schooling, and I’m still paying for it. Finally, after ages of biting my nails in anticipation, my parents and I found the perfect online school for me. I switched from public school to online private, and soon enough, started speeding through my schoolwork. Having all of my work ready when I was made it easier for me to work at my own pace, something my local school system would simply not allow. For the first time in so long, I did not feel reliant on a classist board of education.

Today, I am still behind on my schoolwork due to the issues with my education in 2016, in combination with new setbacks with my health. The difference between my old school and my new school, though, is that the old one guilted me for that fact. This new one doesn’t. Now, the only reminder of the fact that I am lagging behind is my teachers reaching out to tell me that they’re praying for me. Though individual members of my old school’s staff were warmhearted and understanding, the only education that was offered to me only set me up for failure. Despite my disappointment in not being entirely up to speed with other students my age, I feel complete and I feel like me. I trust in God and in myself that my education will fall into place, and I know with no doubt in my mind that my circumstances do not make me any less intelligent. It has taken every ounce of strength in me to view that as fact.

Even still, some days, my mind bounces back to the first time I was betrayed inside the walls of a school. That is okay.

#ivig #education #school #dysautonomia #bullying #ableism