Disability isn’t just a pastoral issue

One of the questions I find myself asking frequently is whether the current dominant practice of perceiving disability and chronic illness as “pastoral” rather than “academic” issues is correct.

WHY DOES IT MATTER?

This is an important question for a number of reasons. Whether issues relating to disability or chronic illness are seen as “pastoral” as opposed to “academic” will determine the extent to which academics are motivated to engage with them. Word sneaks out from the Academy that academics are frequently told to “not get involved” with students’ “personal affairs”. There are departments specifically built to deal with these, like Student Finance, Student Counselling, or Disability Support (whatever any particular institution calls its). Those who staff them have training, are specialists, know how the law works when dealing with sensitive, often confidential matters. If you are an academic, best leave these aspects alone.

The specialist services do much. A Disability Support service will – for students either courageous enough to disclose or forced to do so because “passing” as non-disabled is not an option – interview you to learn about the nature of your disability. They will help you navigate the process of applying for financing, which in the UK takes the form of the Disabled Student Allowance, to pay for measures like library helpers, note-takers, exam scribes for amanuensis, taxi fare to get to and from your home institution, and a range of other support. They will send a notice to your department to be seen only by your teachers with a list of “reasonable adjustments” to which you are entitled, based on the needs arising from your condition, and which teaching staff should ensure are in place for you. This will include notifications of impacts arising from your condition, such as the need to record classes due to problems with concentration, cognitive functioning or social anxiety, or to receive flexibility in the imposition of otherwise hard-line assignment deadlines.

All of these things are necessary. But how valuable are they without some proactivity and engagement on the part of the academics? And, further, to what extent do they exhaust the level of support that might be needed by a student working at PhD level, negotiating not only the widely experienced issues of fluctuating productivity, inspiration, confidence, and progress, but the additional issues arising from daily management of (often unpredictable) disability or chronic illness? This is what’s at stake in the categorization of disability and chronic illness within academia. If it’s pastoral, academics will be more justified in placing it in the “left best alone” because it’s a “personal affair” category of non-involvement. But doing so overlooks important ways in which disability and chronic illness shape academic activity, for better or worse.

PASTORAL WHAT NOW?

Trying to locate a definition of “pastoral” or some criteria that might allow us to categorize any given matter as “pastoral” rather than “academic” proved surprisingly difficult. Many university websites include pages that talk about “Academic and Pastoral Support” which list the sorts of pastoral support services that the university offers. Very few that we’ve found so far specifically state what renders something a pastoral issue. The overall sense appears to be that “pastoral” simply means “not academic”.

It is usually cached out in informal terms as “personal matters”, or in formal terms as “matters pertaining to emotional (and spiritual?) wellbeing”. That which is academic – relating to the work done in order to pass the academic milestones that are the markers of progression and success – sits apart from “personal matters”.

This distinction is a valuable one. It is right to hold that academics should not get involved in the financial matters of their students, should not counsel or otherwise advise on their relationships, or presume to have the medical expertise to make diagnoses or suggestions of medical intervention on questions of health.

But what counts as a “personal matter”? And where do disability and chronic illness fit within this picture?

The standard approach seems to be that disability is a personal matter. And in one sense, this is both true and important. Our disabilities are nobody’s business but our own. They are not a source for anyone’s prying questions, judging eyes or prejudicial treatment. Our colleagues don’t need to know the gory details of our conditions, and they shouldn’t ask.

But – and this is a large and substantial but – there is a way in which disability and chronic illness is necessarily public. It inheres in our bodies. It informs the ways in which our bodies interact with the world, for better or worse. Someone in a wheelchair will need publicly available ramps, lifts, and accessible rooms. Someone with a visual impairment will need resources in Braille, teaching materials that are compatible with Visual Impairment readers, and consistent, safe and well-maintained routes around their research environments. Someone with a condition that leads to exhaustion, energy fluctuations and cognitive dysfunction will need transparent and precise plans to work to, decided well in advance, and with contingency measures built in in case flare-ups hit more fiercely or more often than otherwise anticipated. All of these requirements are basic for someone with a condition that demands them. All of these demands are public and only likely to be met through the participation of others, particularly those in positions of professional seniority.

DISABILITY IN ACADEMIC CONTEXTS

Given the provisions of your average Disability Support service, isn’t all of this covered? The answer, usually, is no. The Disability Service can advise a department that a hearing impaired student will benefit from written lecture notes, but it is down to the academic to provide them, just as it is down to the academic to ensure that their materials have page numbers for dyspraxic students, that images on the powerpoint are set up for visual impairment readers, or that a student prone to crashing energy levels knows that negotiating for extensions on their deadlines won’t be a problem. Much of the functional context for a disabled student is determined by the department’s own practices.

In this sense, disability and chronic illness are not “personal matters”. The experience of disability or chronic illness – much like being a parent or carer – fundamentally structures one’s everyday working practices. The support needed is practical, not emotional. Its only connection with one’s spiritual wellbeing is the damage that is done to it when an otherwise talented individual is prevented from doing their work because of practical, resolvable obstacles. The presence of this support will determine a student’s ability to do the work, or not. These are not “not academic” issues. Instead they are central, foundational, crucial conditions for the academic activity involved in any course of study.

We should note that perhaps – and only perhaps – this issue arises more acutely at PhD than it does at undergraduate or taught postgraduate level. Taught courses offer the student a structure imposed from the outside, to participate with at set dates and times. The problem here is usually one of keeping on top of the work, of accessing resources and of dealing with the costs of weeks or more spent on illness. These problems come up for the disabled or chronically ill PhD student of course, except they exist in a world where the structure is almost entirely of their own making. Depending on the sort of programme, there may be no reading lists, no assessments other than the production of chapters, no outline of work or even external prompt for questions of study. Depending on the supervisor and the department, there may be no firm timetables, no consistently applied plan of action, no informal opportunities to discuss the day’s reading with anyone who has a clue about it.

The presumption seems to be, in some cases at least, that when it comes to the disabled student, the academic’s role is restricted to the academic only. We contend that “the academic” includes the practical strategies academics employ to do their jobs effectively. What’s at stake here are the practicalities of managing academic work. Even if we insist on calling it “study”, since this is what it involves, let’s not labour under any assumptions that it isn’t still fully “work”. And work requires strategies. Work requires understanding one’s own capacities in relation to work: what one does well, what one finds challenging, what one simply cannot do without the input of other people for their expertise or resources. Everyone has a working practice informed by this understanding. Take two people doing the same job, any job, and each will put their own spin on things, working within the mandated requirements of the job in their own way.

If this is so, then disability and chronic illness are salient issues inasmuch as they affect those practical strategies. Disability and chronic illness, then, are not ‘merely’ pastoral matters, even in the weak sense of whatever it is that is “not academic”.  They are, in a significant way, academic. If only more academics would acknowledge this.

Got something to say about disability, chronic illness and the PhD?  Write for us. Email us at team@phdisabled.org.

Image by Wolfram Burner and licensed for use under Creative Commons.