@PennyUmlaut shared an article I saw retweeted by Chronically Academic today. It talks about the dread an academic feels when a student comes to discuss the accommodations they need. This is my response to that article, both as a student, and now as a teacher of students with an invisible disability.
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I went for a chat with my personal tutor in my first few weeks at university, and we talked about my ‘joint problems’. At this point, I still didn’t have the elusive diagnosis of hypermobile Ehlers Danlos Syndrome (hEDS). However, she helped me to come to the decision to consider myself disabled, and that this would enable me to get the help that I would need. I want to stress that she was entirely supportive, and that there was no pressure on me at all, but rather that she was helping me to navigate the systems that exist at university. I do have a disability, but it was difficult for me to accept that at 18.
I then had the joyful task of having a quiet chat with everyone who taught me. I needed to ask to record lectures, and explain that I’d be using voice-to-text software, which I’d just acquired, to be writing my assignments. I said that I had ‘joint problems’ as this was the best way I could think to explain it.
I really hope that I never inspired dread in any of the faculty members I approached. Had I known that those teaching me would feel this bad about having to accommodate me, I wouldn’t have felt able to ask for the accommodations I needed to complete my studies. More recently, when I explain my situation, I say that I’m happy to answer any questions if that’ll be helpful.
However, if someone had asked me what my strategies for coping were, I’m sure I’d have mumbled a bit too rather than admit my mid afternoon naps, multiple pain killers and hospital visits that I’d need throughout the years to cope. This isn’t something I’d have felt comfortable admitting to someone who’d be marking my assignments and seeing me every week.
People like me are very *very* good at pretending to be normal. We rarely show our pain or that we’re struggling, however bad it is. I might wear a splint occasionally, but few people actually seem to notice. It’s not something I’d ever talk about at university unless I’m explicitly asked.
The article describes how demanding the curriculum was. I’m sure this isn’t unusual, and I’m sure also that this seems daunting even for students who don’t have any additional needs. So, for people like me it’s doubly so. However, this made me more efficient. If I knew an assignment was due on Tuesday, I’d plan to have it done by Sunday, so that if I had a flare up, I’d still have two days grace to finish it before the deadline.
I’m not surprised that the student completed everything on time. I expect that, like me, they often pushed through whatever difficulties they were having rather than face the embarrassment of asking for help. The attitude displayed here pushes students like me to complete things to deadline. We want to seem normal, and to show that we can succeed in spite of our disabilities.
The article mentions accommodation forms. I think it’s absolutely necessary that these prepare for the worst. If I knew that something might happen to me, it went on that form. I figured it would be much easier that way around, than to have to experience something difficult like a bad flare, and then explain it to everyone relevant, and then ask for accommodations. Questions would undoubtedly be raised about why I hadn’t mentioned this in the first place.
Now as a teacher, I hope to make myself approachable to students to come to me to discuss issues. I wear my ‘please offer me a seat’ badge while teaching. So far, no-one’s talked to me about it. I’ve also never held office hours due to the nature of my teaching work, so no-one’s approached me with any issues yet. But, when, one day, someone does, I hope that I’ll be able to come to the student on their own terms. Even if a student were to come to me and also had hEDS, I’m aware that it can manifest in so many different ways that I’d make no assumptions about their experience. I might be able to make suggestions if asked, and would most likely reveal that I had the condition as well.
One final point I’d like to address is the typological difference suggested between physical and mental health issues. These are not necessarily mutually exclusive phenomena. Moreover, physical disabilities don’t have to be visible, specific or indeed permanent. Both, however, require appropriate support, whatever that might be, so that the student can continue with their studies. Physiscal disabilities vary too- people don’t have Ehlers Danlos Syndrome in the same way. I don’t use a wheelchair, but plenty of people with EDS do, and just because I don’t need one now doesn’t mean that I never will. My condition fluctuates. I am always in pain, and have been even before I started university. However, the joints this affects vary at least day to day. Sometimes I can’t brush my teeth, sometimes I can’t walk upstairs, sometimes I can do both.
I can’t possibly hope to speak for all students with disabilities with disabilities or additional needs. I can just speak to my experience, of undergraduate, masters and doctoral study with a disability and now teaching at a university. As a teacher now, I feel that my job is to meet students with these kinds of issues absolutely on their own terms, and if I feel out of my depth, to contact disability services to learn how I can better support them. It’s not my job to decide who needs help or how to provide it.
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