By Annika Victoria
This is an essay that I wrote for my university midterm paper. It is about my experience as a young woman with a disability navigating the world of academia and tertiary education. I am publishing this online in the hopes that people who work for educational institutions, whether in an administrative or teaching role, might reflect on how some quite simple things (like putting chairs outside classrooms) can be done to include people with disabilities and chronic illnesses and help them to access an equal education to their peers.
The flight of stairs up to the inaccessible classroom was not my first challenge of the day. I had already had to navigate the bus to Uni – an elderly lady had some choice words for me when I didn’t give up my seat; not hearing as I quietly tried to explain the nausea and bone-crushing fatigue caused by the chemotherapy drugs running through my system. By the time I had arrived for the 3-hour lab on genetic manipulation in flies, I was already exhausted. Reaching the top of the stairs, I found no seats in the corridor outside class, and so I slumped down onto the floor for some brief respite.
“What do you think you’re doing?! You’re blocking the throughway! Stand up!”
Struggling, I stood, too exhausted to explain that yes, I, a healthy-looking 22-year-old woman felt like I was trapped in a body at least 70 years older, thanks to the combination of steroids, chemotherapy and an incurable vascular auto-immune illness. How did I explain that I’d been up the entire night, too nauseous to sleep, curled into a ball from a yet-undiagnosed pain condition? They wouldn’t believe me. It was too embarrassing to explain. I “looked” perfectly fine, after all, maybe just a hardworking student who’d pulled an all-nighter, but surely capable of standing on my own two legs.
My day hadn’t even started, and I already felt like I wasn’t welcome.
Acquiring a disability at the age of 19 was... a unique experience. Unlike some other aspects and intersections of identity, it was one that I wasn’t born with, didn’t grow up with, wasn’t even very cognizant of until I became disabled as a young adult. It was a state of identity that I settled into gradually during my early adulthood. Before I continue, I want to acknowledge that I grew up subject to inherent privileges as I am white, (was) able bodied and am relatively middle-class. In this essay, I will be using some ideas from antiracist and cultural competence frameworks and applying them to my experiences as a person with a disability. Nash (pg. 45) quoting Matsuda (1987) says that “…those who have experienced discrimination speak with a special voice to which we should listen.” Although my experience as a person with a disability is absolutely not going to be the same as the lived experience of a person of color, to quote the Combahee River Collective, a black feminist group active in the 1970s, “the major systems of oppression are interlocking”. There is some universality to the experiences of discrimination that being inside a marginalized group produces. “Gender reaches into disability; disability wraps around class; class strains against abuse, abuse snarls into sexuality; sexuality folds on top of race… everything finally piling into a single human body. To write about any aspect of identity, any aspect of the body, means writing about this entire maze,” writes Eli Clare (1999). Therefore I will examine some of my experiences using the aforementioned frameworks.
In my interactions with disability advocacy groups, I repeatedly hear the statistic that 1/5 people in Australia have a disability. However when I cast my mind back to my primary and secondary education, I now ask myself: where were the students with disabilities? They were not there because both the physical and pedagogical space did not accommodate them. They were not there because my schools had stairs, not ramps. They were not there because any health issues, mental or physical, were kept quiet. They were not there because they slipped through the cracks and stopped attending. Disability was erased from my primary and highschool experience, and hence my understanding of disability was always as something that was outside and “other”. As Ahmed (pg 36-37) puts it, “…numbers can be affective… When bodies gather, it creates an impression.”
I became disabled just before my transition to University. As I enrolled I was pleased to find out about “Disability Services”, a service provided by the institution that could assist me throughout my courses. On the surface, it looked promising. The University has had a “Disability Action Plan” in place since 2003 which “seeks to enable students and staff with disabilities to lead full and enriched lives at the University and fully participate in all aspects of the life, education, research and administration”. Yet, over my 7 years at University I have met only one other disabled person, who only told me about their disability because they knew that I was open about mine. Where are all the people with disabilities? This is in fact a question that the University has questioned as well, within its own disability policy - despite 20% of Australians having a disability, only 3.5% are found as students at my University, even less in the teaching positions and academia (2%). Clearly, the policy alone is not recruiting more students with disabilities to the University. As Ahmed (pg. 26, emphasis mine) explains, “The official desire to institutionalize diversity does not mean the institution is opened up; indeed, the wall might be all the more apparent, all the more a sign of immobility, the more the institution presents itself as being opened up.” Cheoweth and McAuliffe agree writing that, “inclusion inherently upholds the boundaries between those included in and those pushed outside society on the basis of difference.”
Throughout my time studying at University, I’ve encountered many barriers to accessing an equal education to my peers, mostly arising from what is essentially a cultural incompetence in recognising or understanding disability. I’ve experienced reluctance and refusal to address the Academic Plan set up for me by Disability Services. I’ve had to publicly “out” myself as someone with a disability multiple times to access equal needs and rights and been publicly outed by teachers in the middle of classes. I’ve encountered classes I couldn’t access thanks to stairs or distances, been penalised for being sick too often (even if I was keeping up with the unit’s content at home), and don’t get me started on how painful the old cobbled “heritage” stone pathways are to travel over in a wheelchair. The way in which classes, assessments and exams are structured and function in general present a huge barrier to me, a person with severe fatigue and memory issues. Just like my primary and secondary education, I’ve found the University culture just as oblivious to disability. Despite its policies on inclusion, the physical and pedagogical spaces are again not actually set up to be inclusive. As “Ahmed (p.29) writes: “To recognize diversity requires that time, energy and labor be given to diversity”.
One recent experience that made me feel as though I was not welcome at the University was a compulsory math class that I enrolled in last semester. We had three mandatory group assessments, in which we had to work together with 3-4 other students to put together statistical reports. Aside from the fact that no other student would sit anywhere near me in this class – perhaps they were worried that they’d catch wheelchair-itis lest we get too close – I had an extension on my due date, one that I am granted on the basis of my disability each semester in an “Academic Plan”.
“You need to work in a group, it’s mandatory, or you’ll be penalised,” the course coordinator told me for the third time.
“I understand, but unless you allow other students the same extension as me, I’ll have to work on my own – because this is in contradiction to my academic plan that states that I have an additional 2 weeks on this assignment.” I replied.
“Okay, I’ll look in to it,” she grumbled, eyeing me up and down to figure out just what was wrong with me anyway. Another week went by before I’d heard anything.
“You can work on your own, without being penalised,” was the final verdict.
The relief that I had been granted my extended due date was quickly overshadowed by the fact that this project clearly wasn’t designed to be done alone. In addition, the administration had taken so long to decide my fate that I gained no advantage whatsoever on the “extended due date”. In fact, I was now at a striking disadvantage. Out to prove that I wasn’t just the lazy, disabled “skiver” that she clearly thought me to be, I aced the assessment, after putting in far too much effort and ultimately making myself more ill in the process.
A policy or plan for equal inclusion is all well and good, but if the teaching staff are not given the proper training or extra resources to put it in place, then the success of this policy is totally conditional on the attitudes and prejudices of the person running the course – in this instance, whether that person is culturally competent when it comes to the matter of disability. In examining what is needed to provide an equal learning environment, Richards, Brown and Forde (Pg 167) state, “Because each student is unique, learning needs will be different”. However to successfully implement a policy of culturally responsive pedagogy there must be involvement at all levels of the University. There must be both personal, instructional and institutional dimensions working in sync (Richards, Brown & Forde, pg. 164).
A typical essay has a conclusion which implies something has been solved. But this problem hasn’t been solved and thus a conclusion doesn’t feel right. So I’ll just keep on being the token disabled girl being loud about disability until I know that more people like me are included in higher education.
Bibliography (also good resources for further reading):
Ahmed, S. (2012) On Being Included: Racism and Diversity in Institutional Life, Duke University Press
Chenoweth, L. & McAuliffe, D. (2005). The Road to Social Work & Human Service Practice, Nelson Australia Pty Ltd.
Clare, Eli. Exile and Pride (1999) Disability, Queerness, and Liberation, Duke University Press
Combahee River Collective (1977) The Combahee River Collective Statement
http://circuitous.org/scraps/combahee.html accessed 27th October 2018
Nash, J. C. (2008) Re-thinking Intersectionality. Feminist Review, www.feminist-review.com
Richards, H. V., Brown, A. F. & Forde, T. B. (2007) Addressing Diversity in Schools: Culturally Responsive Pedagogy, Teaching Exceptional Children (volume 39, no. 3)
Annika runs her own sewing business and is currently studying molecular biology and cultural and gender studies part-time at University. She is a passionate disability advocate and more of her writing and daily life can be found on her instagram, (@littlepineneedle).
Copyright 2018 by Annika Victoria
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