Updated: Jan 19, 2022
By Sophie Mattolie
Listen to it here; https://open.spotify.com/episode/4RqDQOlfAPKYhhqTNPVsuk?si=45dc899216504de5
I developed my chronic illness - a connective tissue disorder which causes a wide range of symptoms like chronic pain and fatigue - gradually over a few years, then it almost hit me all at once. I was plunged into a new, strange world full of mysterious symptoms and new limitations. It was a lot to take in, and as someone who has always struggled with asking for help, I was reluctant to ask for help at all.
With hindsight, I can tell that this is intrinsically linked to acceptance and internalised ableism. I didn’t want to accept the ways that illness had changed my life at that point, so I got stuck in a cycle of denying it, hiding everything away, pushing myself way too far and inevitably wiping out. Instead of asking for extensions, I stayed up later and later to get work done. I thought (because of internalised ableism) that being visibly disabled would “ruin my image” as a high achieving student, make me look less than perfect. In fact, I didn’t even ask for the access arrangements I was entitled to in my GCSE exams. I didn’t even realise this at the time, but I can see now that I was really scared to let the mask slip by showing weakness. I tried to be a bit more open in year 11 - I told a few teachers and outright refused to do PE (not recommended!), but nothing official or coordinated.
The long summer after my GCSE exams left me with plenty of time to think about how I could make sixth form easier for myself. I had to come to terms with the slow decline of my health - I couldn’t slip under the radar any more, or at least it would make life much more difficult. No matter which angle I came from, being more open was the best thing to do. This was initially very scary because my sixth form is part of my high school, so most of my teachers had known me pre-illness. It felt like another time for me to “come out of the closet”. On balance, I decided to talk to my new head of year about it.
Unsurprisingly, I was very scared and she was absolutely wonderful about it. Ever since then, she’s done as much as she can to help me manage my disability. I got priority for a locker, exam access arrangements, relaxed deadlines, and an exemption from folder checks (they’re too heavy to carry). She also explained it to all my teachers, which was a relief because it meant I didn’t have to spend my first week explaining over and over. All of my teachers have generally been amazing so far, and it’s been hugely comforting to know they have my back. I’ve had extensions granted when I needed them without fail, work prioritised and workload cut down when necessary, and other things besides. All of these little things have added up to make sixth form much less stressful and easier to manage. It was my first time really identifying as disabled and needing reasonable adjustments to this extent, and I am so grateful that I haven’t had to fight for this.
Having teachers on side was only half of the battle. My peers had mostly known me as healthy in high school too, and I was worried that it would be awkward when I rocked up with a mobility aid and no explanation. Most people didn’t seem to know that much about invisible disabilities, so probably assumed that walking sticks were for old people. Despite this, it was nowhere near as awkward as I was expecting it to be. I got some awkward questions for sure, some of which I answered seriously and some I blanked. There were a couple of incidents - someone from the high school shouting a slur at me, and someone trying to steal my stick - but being “the disabled one” wasn’t so bad. Almost everyone treated me the same as they always had. I expected to get a lot of hassle, and it was mostly a non-issue.
Eventually, I began to embrace this, to find pride in being “the disabled one”. I think this came as part of my acceptance of my disability more generally, but it took me longer to be open with it at sixth form. It’s easy to be loud and disabled in online communities, where everyone else is also loud and disabled. But it’s more difficult to be loud and disabled amongst people who think ableist slurs are funny. I’m not fully there yet, I’ll be the first one to admit that. Acceptance takes a very long time, and it isn’t a linear process, so I’m learning to be okay with where I am right now. Sometimes that means hiding it all away and pretending nothing is wrong, ignoring my limitations just to feel like everyone else. Sometimes that means telling teachers what it means to be chronically ill, teaching them what people like me need from them, in the hopes they’ll be more equipped to help others in the future.
Maybe I am “the disabled one” now. That’s fine with me. I spent five years being labelled as a nerd, and I try to remember that this isn’t much different. I’ve finally come to accept, even partly, the idea that disability is just an aspect of who I am. It is as much me as my music taste, my sexuality, and my love of history.
Ultimately, being disabled and loud has made my life a lot easier in recent months, and hopefully made other people more aware of disabilities in general. My teachers know how to help the next slightly lost, chronically ill student they teach. For me, that’s worth all the awkward questions and sideways glances.
(Originally published 19/9/20)