In this series, our research team reflect upon their experiences of doing research and moving through academic and non-academic spaces. We invite you to think with us about what perspectives you bring to a situation, as well as specific physical and personal characteristics that define how you see and engage with the world.
My first full 3-day academic conference took place at a less-than-ideal time: I was in the first weeks of recovering from knee surgery, which resulted in a temporary mobility impairment. For this conference, we in the W/L/F project had been preparing a session for over half a year, so I was determined to participate.
Disability Studies and My Thinking
Before going further into the matter, I want to highlight that disability is a sensitive topic. Only recently have I become more vocal in speaking about it as my understanding of disability as a spectrum has developed.[1] First, I am using the word disability for lack of a better word. The problem I have with ‘disability’ is that the term divides the world into two: people who are able and those who are apparently not. And, as ability is centralised and normalised in European cultures, ‘disabled people’ are seen as differing from the norm. However, when seeing ability as a spectrum, this binary becomes problematic.
A spectrum view of disability includes many more people and challenges binary thinking. Another thing that I want to address is the label of ‘disabled’, which focuses the deficit on the person who cannot adapt to their surroundings rather than the ill-equipped environment itself.
The field of disability studies challenges such thinking, arguing that our built, cultural, and social environments are not fit for people. In this view, people aren’t the problem but the normative world we have built is.
The reason why tracing disability in this context is interesting and useful is because of the schism between theory and action. An example of this theory is the work by leading scholar Donna Haraway, who writes about how humans and technology intertwine. Central for Haraway is the figure of the cyborg, someone who is partly human and partly technology – think for instance about the person with a pacemaker or the Type 1 diabetic with an automated insulin pump. Disability theory and the actions of academia are central in navigating my experience further.
Navigating the Conference
My experience of the conference was like a cyborg; with a crutch in my right hand, I navigated the campus grounds. And this campus was only fit for abled bodies; there were no accessible maps of the campus, or even maps at all. Elevators were not present in every building, doors were heavy, and stairs omnipresent. I have yet to encounter a university building that is easy to navigate, but when you have difficulty moving, every extra step taken takes a toll. Traversing an unknown territory becomes a luxury you can’t afford.
The inaccessibility of the conference led to a first conference experience that was centred around what my body – and mind – could and could not do whereas it should have been about scholarly exchange and intellectual stimulation. The fatigue that comes with trying to adapt in an environment that does not cater to you is immensely tiring. I had to make the reluctant decision to leave early and miss out on vital elements of the conference – a decision my more able colleagues did not have to face.
And in my case, my physical impairment interacted with my invisible disability, adding to the challenges I faced. Holding back tears, I stood next to people who had forgotten to ‘practice what you preach’. I thought: how can you read and love Haraway, as so many of these scholars did, but forget to bring those teachings to the world you inhabit and the people around you?
I cannot make others understand. And I found people sometimes offer care only for what they can see when it comes to disability. My musings on care and perceptions of disability are shaping how I am coming to think about ‘perceived disability’.
In situations outside academia, such as when traveling, people would rush to come and help me or assist me in ways with my physical challenge, when I was okay and did not need it. As if this visual cue, the crutch, was a marker of my needs to the outside world. However, the help usually given was needed more on a mental level, but that marker is not visible and much less accepted. It was a strange sensation. I was perceived as disabled with my crutch. But when I’m walking without this crutch, I am still carrying that label.
At the conference, when the visual marker of my needs, the crutch, was ignored and not seen, this felt like an even bigger dismissal. I can’t blame people for not seeing the invisible, but to ignore visual and physical needs is to actively close one’s eyes.
Accessible Futures: Building an Academia We Deserve
My first conference has given me insight into how much work there still is to be done around disability in academia. Having stepped outside of academia for a while before returning, I hoped that the critical nature of academia would mean better facilities and more awareness than businesses. Instead, I found a discrepancy between the studied works and the implementation of this.
Accessibility is a conversation that everyone needs to jump in on: everyone has a stake in an inclusive and accessible built and digital environment and culture. Everyone has a stake, and ability is always changing; at any point in your life, you may move up or down the spectrum, temporarily and permanently.
What would I love to see?
Well, there are great companies and social ventures that can complete an inventory of a building (be it universities or businesses) and show where you can improve the infrastructure.[2] There are many tiny things you can do that don’t cost much and will help loads for people with physical needs. For instance, have ramps available, move street tiles up to even them with a door threshold, make sure there are handrails on all parts of stairs. Changing the built environment takes time, effort, and planning, but in the meantime, there are still many things one can do to mitigate the challenges that inaccessibility brings.
In policies on communication and behaviour there are many opportunities to become more accessible for people with neurodivergent and differing mental health needs. For instance, at the conference I attended, it would have been great if there was a buddy (who could walk with me to open all the doors), and clear communication about the distances to food courts and an exact description of how to get there, as well as an overall accessible plan of the relevant bits of the campus.
For neurodiverse needs, you can think about marking parts of an office as social and others as silent focus areas.[3] I am aware that countries differ greatly when it comes to this. Some countries have strict laws about (physical) accessibility to government buildings, others less so. But in the end, for academia I wish that organisers would stop and think about: am I matching my actions to my words? And for me? I’m going to get a marker – a lanyard – that shows my invisible needs. It is scary but it is needed.
[1] This can be seen as a sort of internalised ableism; ‘you’re not disabled enough to speak on this’.
[2] This is what we did at my employer.
[3] This is just the tip of the iceberg!
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