This week I was called to interview for a Research Council funding competition. The application was part of a last-minute marathon attempt to restart my PhD research this Autumn. This wasn’t my first time at the rodeo. I had recently withdrawn from a funded PhD place nearly a year after interrupting my studies, having failed to secure the conditions necessary for me to be a successful PhD student and be disabled at the same time. I had tried, oh had I tried. That is, however, a story for another time.
I always suspected that these problems arose, at least in part, because I hadn’t shown up to the PhD being obviously disabled. Back then, I didn’t even identify as a person with disabilities. I had learnt my lesson. This time I was going to be brutally up front. I had no choice: there was no other way to make sense of the withdrawal, or of my year out on interruption not working. I disclosed on the application forms. I used the personal statement as an opportunity to highlight how being a disabled student – housebound, with mobility issues – made me more creative, resourceful, how it had forced me to embrace emerging practices of digital scholarship to keep in contact with the world. This was emotionally taxing, rehashing the pain of the recent past, finding ways of turning it into positives, into assets.
In the UK, prospective PhD students apply to work in particular departments with particular supervisors and once offered a place submit further separate applications to various funding bodies, usually the university itself and at least one national research council.
I applied for both, for all of my places. If shortlisted for one research council competition in particular, I knew I would be called for interview.
I’d known about the possible interview dates for a week or two in advance. I learnt I was shortlisted only on the Friday before the Tuesday interview date.
Behind on some other work due to a bad body week anyway, the email came in on a full Friday lunchtime.
I had been riotously more-unwell-than-usual the week I’d submitted the application, lurching from resting to enforced typing through bleary bodily dysfunction. And thinking. It was awful.
This was excellent news. I was still in the game.
I re-read the email carefully, this time extending my attention beyond those magic words: “We would like to invite you…”
The room number started with a 2. Rooms starting with a 2 are usually on the second floor.
There was no mention of access arrangements. No link to a map outlining disabled parking bays, access routes.
Why would there be?
It was a Friday lunchtime. The interview was the following Tuesday. Those in offices work office hours. I’d need to make the relevant enquiries immediately.
I emailed back, asking if the room was accessible for mobility scooters, whether the lifts would definitely be working (repeated lift failure combined with a tendency to schedule teacher meetings on the second floor had prevented me from attending a number of meetings at my previous institution) and where the nearest disabled car-parking bays were. I explained that I was able to walk short distances. The scooter, my indoor-car, didn’t need to get me all the way, if stairs were few and distances short.
The reply was swift. No, the room wasn’t accessible. Things would need to be rearranged.
The person I dealt with was efficient, no nonsense. In the end, my interview – just mine, I believe – was scheduled in a different room to all the other candidates, and moved to later in the day. The panel would need to walk to and from my interview separately. I was reassured, no bother, no need to worry. They won’t mind the walk.
I was frustrated by the experience. I’ve realised lately that part of the challenge of securing access arrangements as a disabled student in higher education is that it can feel like you need to stick a maximally disabled version of yourself on a pole ten feet in front of you and use it to herald your arrival, to clear the inaccessible brush to create yourself a usable path through the world, through institutions.
In your interactions, especially where practical things like being able to be in the same room as your interview panel are involved, you are forced to foreground your disability. This is the thing that requires adjustments, reminders, sharp nudges in the ribs. It can be tiresome, let alone painful, problematic while trying to maintain an expansive conception of yourself filled with possibilities beyond the small matter of being able to get in the door. Literally.
Despite the prior self-advocation, the setting out my stall as a disabled candidate, I was again needing to self-advocate to be able to get through the door. And the consequence of my disability not being worked into the arrangements as basic was that I would run the risk of being The Disabled Student Who Can’t Get To The Room.
I was now the cause of making senior academics go for a walk. Two walks. There and back. I was mortified.
Everyone seems willing to blame old buildings. I am never convinced.
The honest truth is that the need to self-advocate came at an incredibly pressured time: between it and other events, I tipped headlong into multiple panic attacks. I’m new at these, but they’re happening more and more. The panic attacks became flu. This, plus my realising that my period was due on the day of the interview. They are a health event in themselves. The pain is excruciating, total body. Existential. I do not know how to exist in those moments. Sometimes all I can do is lie on the ground and hold on. Vomiting happens, often profusely. Thinking is hardest then; other times of the month I can sacrifice bodily functioning to push through with the brain but not then. Then thick fog descends and the only option is to be more motionless and ride it out. It’s got something to do with them setting off a chain reaction with my existing disability. Whatever the cause, for me, these are a real health event. One challenge of academia – of working life as someone with a womb more generally – can be how hard it is to communicate this.
I had nightmare visions of vomiting on the Head of a prominent UK academic department.
This was, non-hyperbolically speaking, the worst time of the body month for this interview. Mix in a dollop of grief to boot: my mother died three months into my PhD interruption last year, suddenly, and after 18 months of supporting me through the worst of the health fluctuations, the academic battles. It was her birthday on Saturday, the first of her own that she missed.
This is, as they say, just life. Everyone has things to deal with. Right?
I was thrown by getting invited to interview, given the delirious marathon-run that had been my application. I was thrown by the realization that I would not be my best self on the day, in all likelihood a grieving, bleeding mess, and by the churning questions about what to do, whether to say something, whether to ask for understanding to be extended to this as well as to my disability. Whether such requests for understanding would be read as “special pleading” and undermine rather than support me.
Celebrating my invitation to interview by having to raise my hand, once more, any more, to assert my disabled self-ness, at that time, did not just throw me: it floored me.
The tilt into anxiety forced my hand. I had to let the panel know, somehow. I was not in state to tell them myself. I know well enough how these things go that a message from an academic would be more credible than an incomprehensible missive sent by me, the candidate. Between Friday night and Monday afternoon I sent emails, made phone calls. Again and again the advice came, well-meaning, supportive, that I should contact the panel directly. Self-advocate. Besides, they already know you have your condition don’t they? Isn’t that enough? Don’t worry, just muster that bit more energy and coherence to send just one more email. No need to worry.
Finally I found one glorious soul who dealt graciously with my tears of under-preparedness and over-exhaustion on the phone. Within an hour, calls were made; emails were sent, and not by me. This advocating self could finally rest. I spent the rest of the day in bed.
By the time I got to interview, I was already exhausted. I had little energy to prepare. Not much preparation occurred.
It went okay. I can’t really remember much of what I said, but there was some nodding, one or two “excellents”. I don’t know. How do you ever know with these things even when you’re not semi-delirious? At least I managed to avoid the weeping and the vomiting, I do know that.
This experience got me thinking. What could explain what happened here?
One explanation is that I failed to perceive an expectation that if I needed access to the venue, I would have to make further contact directly to the interview panel to request access arrangements.
One wonders what would have happened if I hadn’t.
I reject this expectation. I had declared my disability. They were inviting me for interview partly because of a document in which I discussed it at length. There was no blink and you’ll miss it here.
What I suspect is going on is that we’re singing from different hymn sheets, me and the Academy. As far as it seems to be concerned, students needing reasonable adjustments should ask for them in every specific instance in which they arise. Self-advocation has become a guiding presumption in academic institutional practice even when declaration – itself, if you like, the ultimate form of self-advocacy – has already occurred.
As one who confronts the consequences of this presumption, whose contact with the academy requires navigating institutional failures to account for the practical realities of disability – especially conditions involving limited energy – I strongly reject any extraneous opportunities to wave the disabled version of myself on a stick ten feet in front.
This fits within what increasingly seems to be the standard model for disabled students seeking access in academia: the onus for securing reasonable adjustments falls on the student. In the UK, disability support services will notify academics of adjustments that a student might employ, but these are rarely framed in terms of proactive ways to help the student, more as indications of things the students might request. Various university websites in the UK and US emphasise the importance of self-advocacy, with some glancing at the distinction between school and higher education, quietly tugging at the idea that self-advocacy is just the adult thing to do. If you need convincing of this, you might consider looking at the #AcademicAbleism conversation on Twitter.
Whatever one’s position on the values of self-advocacy, there’s an argument to be made that this way of thinking places excessive demands on the group of students with least access to the resources needed to navigate academia, precisely because they only receive them if they are willing – able, even – to self-advocate, often at every turn.
Why isn’t a declaration of disability enough to put the ball in the institution’s court to do at least some of the work to ensure disabled candidates are able to access things like interviews?
And why on earth does the onus of demand seem to rest precisely on the shoulders of those in most need of support?
I confess, I’m baffled. I suspect the Academy is too. Perhaps it’s time to have a conversation about what “self-advocacy” and “declaration” consist in, and what counts as a reasonable share of the heavy lifting and for whom.
If this is just life, it is rubbish. We can do better.
Image: ‘Equal Access’ by Steve Snodgrass, licensed under Creative Commons 2.0 (Generic)