[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.]
Editing & Artwork by Emily Bourne. Article by Sakara Dee.
This piece is part of a series on being chronically ill in school.
This article discusses mistreatment of disabled students by authorities and may be upsetting to read.
[Image description: An image of Sakara on the left, accompanied by a quote on the right, that reads: 'Their support for anybody who falls behind seems non existent'. At the bottom of the image is the title 'Schools Are Failing Their Chronically Ill Students']
I used to sprain my ankles a lot, which takes time to heal. After the third time, I needed to take at least a couple of weeks off of school. At the time I was attending part-time, even though it was difficult with M.E.
I spoke to the pastoral care person at our school, and she was shocked that nobody had suggested using a wheelchair.
So, I began using a wheelchair at school. They put a friend in charge of pushing my wheelchair (as self propelling wasn't practical/possible), and let her out of her classes early to come and get me. She had to walk to an office twice a day to pick up and drop off a key that was needed to open the elevators.
While being able to use a wheelchair could have benefited me, the way my school was laid out meant I had to walk a long way between lessons if I had to hand work in or talk to a teacher at lunch time, meaning even my break was exhausting. And with everything being so spread out, lockers were impractical. It was a choice between carrying everything or spending half my time and energy fetching stuff.
Overall, in terms of accessibility, my school was awful for me. The school did have a "special needs" area (which is a hub for people who have specific needs due to a disability), which may have been helpful, but I found the staff patronising which made me not enjoy spending time there.
For years, my parents said home tuition [in-home tutoring] was what I needed, but the school refused to fund it.
When the school did eventually recognize that I needed additional help, they gave me a "wedge" to sit on, but it was heavy on my tired arms. I was in classes with somebody who had a teaching assistant so they gave her the job of carrying it from class to class for me. One day, I picked it up myself and she asked me to give it to her, saying my dad "wouldn't like" me carrying it.
To me, this showed that they weren’t helping me for my benefit, but because they didn’t want my daddy complaining.
Similar to that, I developed a reputation among the teachers for telling my parents things that had happened at school (I've never been one for "how's school?" "Fine.", I like to tell them the things that bother me). And my dad, in turn, got a reputation for lots and lots of dissatisfied letter writing.
The conversation with the teaching assistant is important because I think it says a lot about the feeling which came along with any help I did get.
Surely she should be carrying it for me because I have limited energy as a result of my disability and deserve equal access to education, without unnecessarily causing myself fatigue and pain. Not because she's scared of what my daddy might say.
Eventually, later in high school life, I did get home tuition , after my family got my school records and found the name of someone higher up in the local authority who we contacted directly for help. It also turned out I had to be below a certain level of attendance before they had to fund home schooling. So, I'd been going into school, miles behind my classmates, never learning anything and exhausting myself because it felt like the only option. And my school encouraged me to do that, even though I was struggling/failing tests and getting moved into lower classes, because then they could still mark me as present.
My school made me feel like they saw me as a statistic they wanted to keep track of and that my quality of life and education weren't ever really a consideration to them.
Read about the other stories in this series:Read about my story here. here.
Read about Caitlin's story here.
About the author:
Sakara is a 20-year-old musician and writer who blogs with an aim to change perceptions of young people with disabilities. (she/her)