I’ve sat down to write this piece a frustratingly large number of times, and have found myself unable to figure out how to start. This confused me immensely because when I first applied to write a column about disability, I was filled with the desire to write. I had so many thoughts about my experience with disability, and how it has been shaped not only by my disability itself but by my environment’s reaction to it.
So, what happened? Is this just writer’s block?
Even as I write now, I’m filled with thoughts questioning my supposed authority on this subject. What right do I have to write about disability? What makes me think that I have anything relevant to say? How can I possibly assume that my experience is similar to anyone else’s?
I’m aware that these are ridiculous thoughts. I am disabled, and of course I can write about it if I want to. So, where are these thoughts coming from? Why do I feel like I have to prove myself in some way before I can write this?
I have always felt pressure when speaking about my disability. I feel like I need to prove I am disabled in order to talk about it or ask for support. But at the same time, I feel like I’m not supposed to make a “big deal” out of it.
But what does that even mean? The fact that I am disabled is a genuinely big part of my life, so why do I feel pressure to not portray it as such?
The term “disabled” is, to me, only half the story. It doesn’t refer only to the inability to perform “normal” activities, but also to the exhaustion associated with attempting to do those “normal” things. It’s the disappointment of being unable to do what others are able to do, and the days of recovery needed when I ignore my disability and push myself.
But when the public does not see this hidden half, they can perceive my disability as not really a disability at all because in reality I “can” do the same things other people can do. And I find myself afraid that saying I have a disability anyway will make people view me negatively. I’m afraid that if I speak about my disability without it being “visible,” I’m letting people believe that disabilities aren’t real, and I’m hurting other people with disabilities as well.
I have chronic back pain, and standing for long periods of time and sitting still causes me intense pain that can take days of constantly stretching and lying down to recover from. Before coming to Oxford, I did the same activities that others were doing and dealt with the pain it left me in. I didn’t want to cause problems by asking for support because I believed that I didn’t really need it. As long as I could go through life “normally,” nothing else mattered, regardless of the consequences of ignoring my disability.
But moving to university changed my perspective. Maybe it was because it felt like a new phase of life, or because knowing I’d have to live independently forced me to take action, or because the people I’m surrounded by so completely changed.
Whatever the reason, I decided to apply for disability support and asked for extra time in order to stretch during my exams. Even during the application process, I almost talked myself out of it. After all, before this, I’d done well on exams without any accommodations. So clearly I didn’t need them. Leading up to collections, I kept telling myself that I didn’t really need the extra time that I had gotten, and that I would complete the collections in the standard time and submit them early so that I wasn’t “cheating” by using the extra time.
But the moment I sat down for the exam, I realised I had been wrong. Sitting in a chair I was unused to for more than ten minutes was painful, and I spent a lot of time adjusting my position, and I found myself repeatedly distracted by the pain I was feeling. I realised that my accommodations hadn’t given me free, undeserved extra time, but time that I actually needed in order to do well.
I was also able to stretch in between writing my essays, and I came out of it feeling physically better than I had after most exams I’ve taken in my life. Before getting accommodations, I would be very tense during exams and be in increased pain for days after. I was still in pain after collections, but it was not nearly as intense as it would have been without accommodations.
I’m immensely grateful that the university gave me the support I needed, and for my friends who encouraged me to apply for accommodations. I feel so much more confident in not only saying that I am disabled, but also requesting that others accommodate me, rather than forcing myself to accommodate them and then going through pain and exhaustion.
I’ve found that whether or not someone has a disability is determined not based on a person’s individual abilities, but on their ability to perform tasks in the same way and to the same extent as the majority of society. People with disabilities are very often expected to work towards performing similarly to others, and accommodations are portrayed as a favor to them, rather than as essential and basic provisions.
A large part of the struggle for people with disabilities is not due to their disabilities themselves, but due to the conflicting expectations they are given by the world around them.
As evidenced by my struggles in writing this piece, I still don’t completely understand my own experiences with disability, both internally and externally. And I want to understand the complexities not only behind my own difficulties, but also those of other people with disabilities.
I hope that through this column I can talk to other disabled people for their perspectives in order to understand how environments can affect perception and experience of other disabilities, and disability overall.