By Imogen Barker
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Trigger warning – ableism: academic
It took a long time for me to become comfortable using the term ‘disabled’ for myself. So that we’re on the same page, I’m using the term disabled as defined by Disability Works Australia: “A disability may be generally defined as a condition which may restrict a person’s mental, sensory, or mobility functions to undertake or perform a task in the same way as a person who does not have a disability.”
I’m a short person (160cm, to be precise), and as a shorter person, I also have small hands. In all honesty, my hands look appropriately proportioned to the rest of my body. However, I have a physical impairment called Brachydactyly. Every case of Brachydactyly is different, but the general issue is an underdevelopment of bones in the hands and/or feet. In my case, my metacarpals stopped growing when I was very young. As a result, my handwriting is slow, not always legible, and causes extreme fatigue and pain in my hand, wrist, arm and shoulder. If writing for extended periods of time, which I’ve avoided as much as possible since 2016, I sometimes need to lie down afterwards to reduce the consequential pain in my body.
Sometimes, the physical nature of this condition is classified as a disability by doctors and surgeons, other times it is not. Due to this ambiguity, and the fairly invisible nature of the condition and its impact, I always felt like an imposter when claiming I had a disability or needed extra provisions. I mean, so many people have it worse.
I’ve found that this is a common experience in the disabled community; internalised ableism is difficult to dismantle when you have a largely inaccessible world telling you that, unless you have a visible disability or impairment, you should be coping in your day-to-day life.
As a result of my disability, I’ve always struggled to complete tasks that involve fine-motor skills or handwork, and I adopted a claw-like grip for pens and pencils from preschool. Thankfully, in the early stages of education, colouring-in, handwriting exercises and building tasks are more often for enjoyment, and not a necessity. We did not learn that I had the condition until I was in my first year of high school. Before that, teachers always blamed daydreaming and poor time management for my ever-growing pile of incomplete classwork and assessments. Over the years, I’ve tried occupational therapy and had numerous doctor and hospital appointments to see if surgery was a viable option. Eventually, my hands ‘peaked’; I was told I would not be able to write faster at any point in my life. My handwriting speed currently matches that of a person aged 14-16 years. My legibility matches someone around 14 years of age, when writing at my fastest speed. I am 20 years old. For my final years of high school, when my speed and legibility was around that of a 12-year-old, I was refused disability provisions because a number of teachers felt it would provide an ‘unfair advantage’ in completing assessments should I be granted extra time, a laptop, or a scribe. I was told for seventeen years that I had ‘so much potential’, but that I ‘just needed to try harder’. I never completed a timed, handwritten assessment in all my school years until my Trial HSC exams, when the school finally conceded and supported a scribe assisting in the examinations.
While it’s easy for me to avoid handwriting now, as I use a laptop for all my work and am proficient in touch-typing, I’ve gradually learnt that Brachydactyly still impacts my day-to-day life in weird and surprising ways. For example, I take a much longer time to tie shoelaces, and getting dressed is generally a struggle made more arduous if the clothing involves buttons, zips or ties of any sort. Preparing food, such as chopping fruit or vegetables, whisking or kneading is tedious and pain-inducing. Needless to say, I don’t enjoy clothes shopping or cooking often. I still love colouring-in, for my mental health, which feels like an act of rebellion to all my primary school teachers whenever I complete a piece.
However, I’m very privileged. I do not face the same discrimination and abuse that many with disabilities do, invisible or visible. Often, able-bodied people have told me what they think will improve my disability, or how to navigate the world around my disability. Any member of the disabled community will undoubtedly report similar instances of microaggressions, regardless of the nature of their disability. How we choose to navigate the world is our business; we have the experience of living with our disability, and it’s exhausting to constantly prove our validity and ability when able-bodied people are in positions of power. Accessibility isn’t at the forefront of their decision-making. I’m fighting. I’m working with disability communities to fight the stigma, but also to help educate abled people how inaccessible the world is right now. We can’t keep living like this. But this fight needs to be taken up by abled people, abled people who are free of the stigma and fatigue that comes from living with a disability.
This is a call to action. Stop being a performative ally and stop talking over disabled voices; we know what works best for our bodies and minds, we know how to improve our circumstances, we know what needs to be done. So listen, and help us create this change so that disabled people can also exist in a state of comfort and safety.
Imogen is a third-year Bachelor of Arts student, majoring in Theatre and Performance, minoring in Politics and IR. She’s an active member of the Student Representative Council and theatre society (NUTS), and is also completing a part-time course at NIDA. Imogen can often be found around the theatres on campus, dancing to Lizzo.