|Photo courtesy of Adrienne Brodie|
I’m entering my 11th year at La Trobe University, and I’m halfway through a PhD.
2021 also marks my 11th year of living with an invisible illness. My illness, multiple chemical sensitivities, impedes my access to most buildings, though the implementation of a Learning Access Plan (LAP) devised by the AccessAbility Hub (formerly Equity and Diversity) helps mitigate some of the invisible barriers I face. The university’s strong commitment to enabling my physical access on campus meant that my tertiary education has been cathartic; my studies gave me a sense of purpose while my personal life was turned upside-down.
Things changed, though, as I moved through postgraduate studies. My LAP required adjustments that were only realised as access barriers arose. It was the difference between activating a LAP for regular lectures and tutorials in undergrad, to attending irregular workshops with staff and students from across the university in my postgrad years. Losing my anonymity and negotiating access to different workspaces saw my access at uni gradually eroded. Working at home was challenging so I found alternative spaces including two local cafes where I got to know the quiet times, could write indoors or outdoors, and my access needs were understood and accepted.
Managing all this meant I felt burnt out, so I didn’t really see how I drifted away from friends and contacts while focusing on fieldwork in 2018-19. When I was home, in my small rural community, I still connected easily (with my illness invisible and well managed).
When COVID-19 outbreaks intensified in 2020, I was already stuck; frozen by intellectual fatigue. I couldn’t open my laptop, I wasn’t reading and, worse still, I was avoiding my research. My access dwindled to returning library books and squeezing in opportunistic catch-ups with peers. Losing cafe access was the final blow when it came to holding onto any sense of routine around writing.
My newsfeed on social media was post after post of computers next to cups of tea and meals, home office desks, along with glimpses of pyjamas and moccasins. I wondered if the novelty of working from home would wear off for people. The irony is that being house-bound, physical (not socially) distancing, wearing masks, outdoor dining/socialising and restrictions on local and international travel, are my normal with my condition. I was prepared for lockdown.
When an opportunity arose to take out an equipment loan for my graduate researcher desk computer, I felt such relief. The relief was from being freed of the pressure I’d put on myself to continue to go to uni despite it, more often that not, resulting in bouts of illness. I’d naively viewed platforms like Zoom as reserved for regional and international students, plus Zoom-shyness driven by social anxiety and introversion held me back. I’d been feeling locked out of the uni campus because of the threat it was to my health, and it was a strange parallel to then have everyone locked out of uni because of a potential threat to their health!
I think of the PhD journey as that in-between stage of being a student and researcher, just like the phase in metamorphosis where the caterpillar is no longer a caterpillar but it’s not yet a butterfly. The caterpillar journeys into the unknown, into the darkness, from which it is destined to emerge into the light once more - with wings. The darkness for me was facing up to the burn-out. I expected that lockdown would be a chance to catch up. So, I began to engage in workshops, a side project and social catch-ups as a way to stay connected to uni. A student I met during the COVID lockdown via Zoom graduate researcher check-ins introduced me to the term ‘internalised ableism’. Already plagued by imposter feelings, my inner voice was now caught in the act dishing out ableist attitudes towards myself.
Internalised ableism is defined as:
A practice where disabled people internalize the ideas and prejudices of society that see disability as ‘other’, as something undesirable, as tragic and as something to be shunned if not pitied. This in turn results in the disabled person loathing themselves and their bodies. They inherently see themselves as lesser human beings... (Ableism and internalized ableism)
My internalised ableism sounded like:
“I don’t look sick – they must think I’m recovered.”
“People can’t see my headache. They’ve tried really hard to help me; they will think I’m rude for leaving early."
“I’m an imposition on others.”
“I wonder if people haven’t come today because they forgot about my accommodations”
The last statement was the most troubling as, on arrival to a workshop, I would scan the rooms and count empty seats. It was a reflection of the level of kindness from strangers not wanting to make a negative impact on me but in my mind I believed they were now excluded, so I’d decide to miss out or not activate my LAP.
Once I quietened that inner voice, the pressure to be on campus fell away. I began to see lockdown as an opportunity to overcome my Zoom shyness, engage more, and reach out for help. It was through my lockdown experience of connecting remotely that I began to understand that my burn-out was justified and my long-term struggle to opt for working from home was real. Once I began to respect my limitations, I re-imagined what disability access could look like for me.
During lockdown, it took me a while to see the opportunity that had been staring at me all along. I forced myself to attend a more social graduate researcher check-ins and decided to engage in a collaborative project because it was not face-to-face. I discovered I could be more myself on this platform. I began to register for more workshops with the RED team. During RED’s Academic Writing Month program, I had many firsts: I attended the 3-day virtual writing retreat and did more workshops. I attended conferences, webinars and courses. I attended the whole virtual School of Humanities and Social Sciences conference and presented as part of a group. Outside of studies, I had increased access to doctors via telehealth appointments and access to counselling via Zoom. Because of all this, I was able to get the specialist health-help I needed to investigate my causes for burn-out and clear some research/writing blocks. I also engaged in things made available via Zoom, that weren’t previously online– things just for me, which I hadn’t done before.
Inclusion of an individual who has severe chemical and fragrance sensitivities is no easy task, but it is only because of the acceptance and willingness of people who have supported my desire to learn that I’ve made it this far. I have always been encouraged to activate my LAP whenever I needed but this was a major struggle because I found it embarrassing to ask for the kind of accommodations I need.
Linking in remotely means my peers, supervisors, and other staff will see me when I’m feeling my best, and not when I’m preoccupied with trying to ignore my surroundings, feeling ill or anxious at being unable to string a sentence together.
What AccessAbility Hub, my supervisors, teachers and peers think of as an exclusionary context – that is, not being able to be on campus and experiencing my studies online - is, for me, what will lead to a more enhanced level of inclusion. Until the time comes when the accommodation measures I require are universal, this is the best way for me to proceed. ‘COVID-normal’ showed me inclusion re-imagined for those facing invisible barriers to access.