Today I initiated conversations with my new institutional home’s Disability Support Services. As a disabled postgraduate researcher returning to PhD study after a previous unsuccessful attempt, I’ve been here before.
Here’s the thing: what I’ve found at this level, and in my previous experience, is that the “reasonable adjustments” – the accommodations to which disabled and chronically ill students, with medically confirmed diagnoses are entitled – are framed in terms of “what the student needs in virtue of their condition”.
In other words, the idea is this: you, the disabled student, know best how your condition affects your life, and importantly, your working practices. You, therefore, are best placed to prescribe to your institutional support services, exactly what accommodations you need them to arrange for you.
On its face, this seems reasonable enough, especially if we leave aside for now the experiences of students who become disabled while doing a PhD who, it might plausibly be argued, are not yet experts in their condition since they’re still navigating the emotionally and cognitively exhausting process of becoming “sick”, obtaining diagnosis and then working out how on earth to live with the condition.
But here’s the kicker: when it comes to studying for a PhD, even the most experienced student won’t know how their disability will affect their work strategies since their experience of academic work will (generally) only be in the context of taught courses, i.e. taught undergraduate degrees, and in all likelihood, a taught postgraduate Masters-level course.
Even if an incoming disabled PhD student can reasonably be expected to be expert on their condition, it seems like a stretch to suppose that expertise could extend to being expert on their condition in the context of what’s needed to do a PhD.
So who are experts on doing PhDs with a disability or chronic illness, if not pre-PhD disabled students?
Well, you’d think that Disability Support Services experienced in supporting PhDs might be, and would be well-placed to offer something like a bank of strategies that have already been deployed by previous disabled and chronically ill PhD students. Even if the particulars of any one disabled experience will differ, there will be common issues such as how to deal with fluctuating patterns of symptoms, of functionality; how to deal with the repeated self-advocacy and organisation required to just be disabled in the world of academia, etc.
(To take just one example, I would recommend any of you check conference posters to see whether Access arrangements are posted up front or whether, yet again, the disabled attendee must both out themselves as disabled to learn those arrangements and in so doing, undertake administration that goes beyond the usual tasks of mere registration, transport and accommodation arrangements. We’ll be posting more on this soon.)
Other relevant experts, you might think, are PhD supervisors. These professionals with PhDs of their own will, as a community-at-large, have supported myriad students through the PhD process. Their understanding of what must be done, practically – the baby steps that must be walked daily, weekly, and monthly – to ensure successful completion of a PhD will be the most robust of all.
Unfortunately, full-time disabled PhD students remain a relative rarity: HEFCE figures in 2009 report that despite a 316% increase in full-time PhDs with declared disabilities between 1997-2009, these students still made up only ~5% of the total full-time PhDs nationally. With 16% of the working-age population reporting as disabled, it’s no great stretch to suggest that disabled people are under-represented in the upper echelons of the Academy.
What this suggests is that while PhD supervisors may be expert at what it takes to get a PhD, they may lack experience supporting disabled students – who, let’s remember, will likely have differential requirements in virtue of the very nature of the wide spectrum of impairments that lead to “disabled” status, and who might not even be “declared” as disabled, for all sorts of complicated reasons pertaining to academic culture, and especially those elements that pertain to disability and illness.
This points to a similar problem for Disability Support Services who, at least anecdotally, report that disabled PhD candidates are relatively few and far between. These departments, well-versed in supporting the needs of disabled undergraduates and taught postgraduates, may themselves lack ample experience supporting disabled PhDs, and so may neither be well-placed to advise candidates on what accommodations they might need, or to advise supervisors on how to enact those accommodations or any other support needs that might arise in virtue of a disability.
Guidance offered to supervisors on how to support disabled and chronically ill PhD students appears to be relatively absent from the public domain, with the notable exception of the advice offered by the Premia website, even though many students find that site overwhelming and not always representative of their experiences.
The third group who might be relevantly expert at how to do a PhD while disabled are, of course, disabled and chronically ill academics. There are many such people in academia, though issues around disclosure make this a sensitive topic. Some are “out” as disabled, some work tirelessly to improve the circumstances of disabled students, while others, entirely justifiably, would just like to get on with the business of being an academic without at the same time being, in effect, a disability activist within academia, or even known as disabled within their professional contexts.
It’s deeply problematic to suggest that the onus for supporting incoming disabled PhD students should rest with disabled academics with PhDs, but we can make the weaker claim that if there are those who are willing to share their experiences, there are students coming up behind them who would find learning about how they did it – and perhaps that they did it, that ‘it’ really is possible for “people like us”, i.e. people whose bodily experiences result in being “disabled” by the world (as is the view taken by the Social Model of Disability) – invaluable.
Given a recognition that incoming disabled and chronically ill PhD students are perhaps not expert at what it means to do a PhD even if they’re (in some cases) expert at the generalized practicalities of their condition, or even the specialized practicalities arising from doing a taught degree with their condition, I propose we stop asking the already-exhausted to keep reinventing a wheel while positing that they’re best placed to know what sort of wheel they’re dealing with.
Instead, how about this:
Let’s use this space to start creating a database of considerations and accommodations that those with experience at being disabled and doing a PhD have used – successfully, unsuccessfully, or partly successfully with room for review and refinement – that could be used as a resource for incoming PhD students with disabilities and chronic illnesses.
Even though disciplinary methodologies vary widely, even though the practical demands of disabilities and chronic illnesses occupy a huge potential spectrum, let’s start from a new presumption: that lessons learned by those further along the academic road than us may be a valuable resource – for inspiration, for reference, for adaptation – to those just starting out on their PhD journeys.
Help us out by answering any of the questions that most apply to your context in the comments below:
Have you completed a PhD with a disability or chronic illness? What accommodations did you request? Which accommodations worked best for you, and in relation to which practical requirements of your condition? Which accommodations did you try that were less successful, and why?
Have you supervised PhD students with disabilities or chronic illness? What strategies would you identify as being most successful in terms of getting them through to completion?
Are you a disability support advisor with experience supporting disabled and chronically ill PhD students to identify and communicate the accommodations they need to succeed at the PhD? What were they?
NB: Under no circumstances are we asking people to disclose the details of their diagnoses. These questions are asked from the recognition that there are commonalities to many experiences – missed deadlines, weeks off for fluctuating illness or even surgical interventions, combined with slow recovery times and loss of momentum, or difficulties securing consistent support or understanding, etc. It’s how to deal with these common features of our shared experiences as persons with disabilities that we’re interested in here.
Image: ‘Wall of wheels’ by Iain R. Licensed under Creative Commons 2.0 (CC BY-NC 2.0)