But you don’t look disabled…

Published

Credit: Crohn’s & Colitis UK

Hailie Pentleton
Writer

Our writer Hailie Pentleton shares her experience of life as a student with a hidden disability.

Starting university is daunting for any student. You accept your offer, buy the overpriced textbooks you were warned against, and before you know it, you’re sitting amidst a sea of fresh-faced peers wondering if you made the right decision. It is fair, and normal, for anyone to feel overwhelmed by it all; the new territory, the increased workload, and disrupted sleeping pattern. Trying to find your feet in new friendships or navigate your way around campus is enough to stress anyone out. Add a disability into the mix and it can seem impossible to manage, especially if that disability is invisible.

In 2017, more than 94,000 disabled students entered UK universities, myself included. However, for a number of reasons, all of which were related to my health conditions, I dropped out. I had taken full advantage of the disability services at my previous university, and although I was grateful for their support, it simply was not enough to keep me afloat. I tentatively reapplied to the University of Glasgow who would accept my application to transfer only if I could provide evidence of an extreme change in my condition. This caused me a lot of anxiety. Though my conditions were so debilitating that dropping out of university had felt like my only option, I still did not feel like I was “ill enough”.

I believe this view was heavily influenced by the way I have heard invisible disabilities spoken about by other people. An invisible disability is one which is not immediately apparent to the onlooker, such as my own condition, Autism Spectrum Disorder. Given its hidden nature, people tend not to shy away from telling you how much “worse” other people have it. That you must be “fine” if you manage to make it into classes or spend time with friends or do anything else that makes your life appear “normal”. After a while, you tire of explaining the way that your condition affects you and begin to view yourself through the lens of the spectator; viewing yourself as lazy, incompetent, or weak. These were just some of the perceptions that a group of disabled students I spoke to felt that others had of them. In reality, managing a disability of any kind whilst studying shows incredible strength, determination, and power.

Though it is hidden to most people that I encounter, I have never attempted to hide the fact that I have a disability. I have never wanted to be defined by the fact that I am autistic, but I appreciate it when other people understand that it is a part of who I am and that it affects my life considerably. Autism Spectrum Disorder, or ASD, is a neurodevelopmental condition which affects a person’s ability to socially interact and process sensory information.

The nature of my condition means that I can sometimes struggle to do seemingly basic things. Often, getting out of bed is a struggle, remembering to eat breakfast is a chore, and the subway commute is enough to bring on a sensory induced anxiety attack. The pungent smells of the carriages, foreign bodies pressed against my exposed skin, and the relentless screeching of the tracks below have been enough to send me back to bed on my worst days. When I do make it onto campus, it can be difficult to concentrate on lectures or to feel productive. Keys click, pens pierce pages, lecturers lament over lost manuscripts and my mind goes into shutdown.

Feeling overwhelmed by “simple tasks” or finding it difficult to concentrate, are very common symptoms amongst students with invisible disabilities. One student that I spoke to explained that her depression and anxiety have a negative effect on her ability to function, that they “heavily impact [her] concentration and motivation to get up and do necessary tasks”. This, in turn, causes her, and many others, to feel frustrated at her situation and herself. What makes matters worse is that because of the hidden nature of these conditions, she can feel as though people think she is lazy, when in reality she is “trying her best to do everything” to the standard expected.

There are, gratefully, support services available at the University of Glasgow. Disability services seek to ensure that all of the students who have contacted them are supported to the best possible standard. Personally, my experience with them has been positive. My disability advisor ensured that all of the adjustments I require were put into place from day one. These adjustments include flexibility of attendance and separate accommodation for exams. I was, however, lucky enough to bypass the waiting list because of the nature of my transfer. Though the advisors themselves do more than enough for the students that they support, there are simply not enough of them to go around. For many students, including some of those I spoke to, the waiting list for an initial assessment can be upwards of a month’s wait. Similarly, the waiting list for the University Counselling Services can be as long as six months.

Although I do have a number of adjustments in place, it often feels that they aren’t entirely respected. For example, though I have been granted flexibility of attendance and my tutors and lecturers are aware of this, I am still asked to fill in an absence report every time I miss a class. Attendance is something that causes a lot of disabled students anxiety, especially in those cases where attendance and contribution are graded. Beth, who has fibromyalgia and chronic fatigue syndrome, expressed that “filling out a form each time feels like a real chore”. She feels “it is more difficult to justify missing classes than it needs to be. I have to jump through hoops and push myself to get to class due to attendance marks.”

Perhaps the most frustrating thing about being disabled on campus is the lack of universal policies surrounding resources or lecture recordings. As mentioned, it can be difficult to keep up your attendance when you’re experiencing chronic pain, exhaustion, or anxiety. Some departments are more than willing to provide lecture recordings and handouts, accessible to all students. Others simply refuse. In a class representative meeting I attended last year, I was informed that these resources were unlikely because they would “encourage laziness”.

Disabled students are not lazy. We are working just as hard, if not harder than our peers. Though our conditions are hidden, we are not invisible. Disabled students are not a minority, there are thousands of us who require and deserve adequate services, respect, and understanding. Please take the time to think before you make judgements about our “poor performance” or “attention-seeking behaviour” – we hear these, and they hurt. To the students with invisible disabilities reading this now, I see you. We are competent, we are strong, and we can succeed – so long as we have access to the correct support.