[Image description: ‘I Don’t Know How To Explain To You That You Should Care About Chronically Ill and Disabled Students’ is written in black text on a white piece of paper, alongside it is a drawing of Emily holding up her jumper to reveal a yellow shirt reading ‘disabled, not worthless’. Both text and drawing are cut out and stuck onto a pink background.]
Article & Artwork by Emily Bourne
This piece is part of a series on being chronically ill in school.
Click the names below to read more
This article discusses mistreatment of disabled students by authorities and may be upsetting to read.
[Image description: An image of Emily on the left hand side, accompanied by a quote on the left hand side that reads 'I felt so ashamed at my loss of cognitive function. And my teachers fed into that, little by little, making me think that if only I tried harder, I would succeed in life.' Beneath is the title 'Schools Are Failing Their Chronically Ill Students'.]
Hi! My name is Emily Bourne and I have Fibromyalgia.
In my first year of Sixth Form (16 years old), I was doing fairly well in school; As and Bs all-round mostly. I enjoyed writing essays for my English Literature class, I liked studying for Psychology and even though art was a little hard on my muscles, I did love painting.
But throughout that summer, my chronic pain began getting worse. The flare began and I found it increasingly difficult to go about my daily life. I started to miss a lot of days of school. It got to the point where I would only be able to come in once or twice a week.
Unsurprisingly I fell behind on work and my parents had to talk to the teacher in charge of my year group (grade) about my absences.
My Head of Year said that she would inform all my teachers about my illnesses and that I would get special consideration when it comes to exams. However, my teachers continued to call out my absences in front of the class, which made me feel increasingly self-conscious. My parents had to inform the teachers personally, one by one, about my illness. My teachers responded gracefully, but they also claimed they didn’t know about it or had “forgotten”.
This happened with every one of my teachers.
It was so humiliating for my teachers to tell me that I wasn’t working hard enough, and then upon hearing about my illness, profess that they had no idea, look at me pitifully, and continue their criticisms.
Why my Head of Year couldn’t have just put a little bit of effort into handling the situation respectfully and making sure my teachers knew is beyond me.
I wish I could tell my psychology teacher how demeaning it was for her to ask me a question in front of the class about a (extremely difficult) topic I had mostly been absent for, and then tell me that I “clearly” wasn’t paying attention to the lesson otherwise I would have remembered the answer. Not for a second did she consider that I, or potentially any other student in my position, was increasingly forgetting information due to being in pain all the time.
At that time, my boyfriend and my parents were constantly asking me, “Emily, we have talked about this. Don’t you remember?” and I never did remember. But my teacher didn’t care about my cognitive impairment brought on by my Fibro.
At that time, I struggled with my mental health in addition to being in physical pain every waking moment. I felt so ashamed at my loss of cognitive function. And my teachers fed into that, little by little, making me think that if only I tried harder, I would succeed in life.
They made it seem like I had a choice in my pain and suffering, like I could put it aside for a moment so that I could be a percentage in their pass rates.
During exams in particular, my school showed me their belief that if you want to achieve, you have to be able-bodied. They said “we tried our hardest to help you but it couldn’t be done” whilst enforcing ableist rules, procedures, and learning strategies. They didn’t produce a health plan for me or send me the work on my sick days or let me use a laptop. They didn’t give me the help I asked for.
This article has been a long-time-coming. Every time I’ve gone to write something about this topic, I fall short. My chest starts to feel heavy all of a sudden. In essence, my school failed me as a chronically ill student, and I am not the only one.
Read the other stories in this series here (links will be available as the articles are published):
Read Sakara's story here.
Read Emma's story here.
Read Emily Able's story here.
Read about Caitlin's story here.
About the author:
Emily Bourne (she/her) is a 19-year-old artist, freelance writer and activist from London. Her main goal is to highlight and call-out ableism in society. Oh, and to remind disabled people that they are SO effing POWERFUL. Follow her Instagram to learn more and follow the links below!
More articles by Emily about her experiences with Fibromyalgia:
Why Punishing School Children For Being Sick Is Ridiculous | Schools Don't Care About Disabled Students | 4 Ways Ableism in My Elementary School Left Me Traumatized | Does My Wheelchair Make You Uncomfortable?