Disabled Student Allowance & PhD-Specific Doings: A Resource for Self-Advocacy

A wall covered in shelves all stuffed full of books. Light shines on the left-side of the image.

 

The first time I went through the UK’s Disability Needs Assessment process to secure Disabled Students Allowance for a PhD, it took four months and the production of a letter that I wrote, signed off by my then-supervisors, clearly stipulating the range of activities that typically distinguish postgraduate researchers from any of the prior stages of academic study.

Going through this process again now, and despite having supplied this letter to my Needs Assessor, it’s become apparent that these points about the specific character of PhD activity need reiterating. And if I’ve had to say them not just once but twice, there’s a strong chance I won’t be alone in this.

Here’s the process, in brief. In the UK, disabled and chronically ill PhD students will be entitled to access support from the Disabled Students Allowance, a fund that provides for equipment, specialist and non-specialist helpers, and other provisions that support needs arising from the student’s condition.

Once you register with the university’s Disability Support Services, you’re sent for a Needs Assessment. This is a one to two hour meeting with a specialist assessor (increasingly from a subcontracted private company specialising in Disability Support) to discuss what support strategies can be implemented specifically for you, on the basis of the particular needs arising from your particular condition.

Two things are worth noting. The first is that the focus of these assessments tends to fall squarely on what technological provisions are available to support a student through the activities required for academic study. In the Humanities, you’ll discuss software and strategies for note-taking, for reading, writing, planning research, and so on. In other subjects, you’ll talk about how to conduct field work, how to undertake labs and other activities specific to your discipline. There are also sections for various assistants to help you get things from libraries, offer specialist academic mentoring to support you with maintaining good practice on the project, and even people to just help you get around campus. You might be offered new tables and chairs to reduce chronic pain from sitting for long periods of time, and you should certainly be asked about how your mobility is affected, and whether you’ll need taxis and other mobility support to carry out your academic work.

The second is that a lot of the language and thinking written into Disability Needs Assessments reflects those disabled students who are most numerous in higher education, i.e. undergraduates and to a lesser extent, taught postgraduates. This is reflected in various ways: the difficulty in reflecting the fact that for PhDs, the getting to your home university doesn’t exhaust the list of places you as a researching academic may need to get to, like reading groups, seminars, or libraries situated in other institutions, let alone discipline specific conferences that happen in whatever country they happen to take place in.

There’s a point lurking in here, and it’s this: the focus on technological or practical support provisions combines pretty badly with the apparent rarity of disabled or chronically ill PhD students, since it can lead to a certain reductivism in how support is framed, and whether the support processes designed are adequate for supporting the full range of activities plausibly expected of PhD students.

Taxis to campus are great, but they’re not enough if PhD students also have to go to the British Library or other university libraries. Financial support for extra overnight accommodation is wonderful, but inadequate if it’s restricted to UK-based conferences only, and the same applies to transportation. The trouble is, these Needs Assessment documents become the backstop against which further support is adjudicated, so failure to include these provisions up front can lead to problems down the line when, say, you need to book a DSA-funded cab to go to a conference somewhere other than at your home institution.

In short, sometimes disabled and chronically ill PhD students have to go back to their Disability Needs Assessors and request that their assessments adequately reflect the fact not just of being disabled, but the fact of being a PhD student and what that involves.

Here, then, I provide an amended version of the letter I had to write for myself just to get adequate DSA provision as a Philosophy PhD student, in the hope that someone, somewhere, might find it helpful should they find themselves undertaking the same sorts of negotiations I find myself in yet again. Should you find yourself in the same boat as me, feel free to use the words below in any of your efforts for self-advocacy.

 

Some things PhDs generally have to do that taught postgraduates and undergraduates generally won’t have to do:

 

  • Attending seminars and lectures at the home university and elsewhere: These are important opportunities to hear presentations on up-to-minute research and projects by leading speakers in her field, and offer opportunities to meet and collaborate with academics and PhD colleagues to gain feedback on her research. It is important for PhD candidates to have a rich input of different ideas to stimulate originality in what can otherwise be a rather narrow and isolating research process, and attendance at these sessions can often be the easiest way to achieve this, especially while higher education institutions get their act together supporting PhD and other researchers accessing digital alternatives to in-person activities.

 

  • Participation in Reading Groups: Both the home institution and nearby others run Reading Groups where academics and postgraduate researchers discuss core texts within the discipline, gaining insights and perspectives not always available from non-collaborative work. While some meetings do offer conference call facilities, others do not, and so will require attendance in person, typically on a weekly, fortnightly or half-termly basis. Even if a PhD student is sometimes physically unable to attend due to their condition, this should not preclude the possibility of attendance on those days where it is physically possible.

 

  • Participation in conferences: Conferences are an essential part of any PhD and provide opportunities to present one’s research, gain feedback from academics and postgraduate researchers specialising in one’s area of research, and provide an important step on the road to publication. Conferences are selected on the basis of relevance to one’s research topic and are often hosted internationally, though sometimes do take place in the UK. PhD students are often expected, certainly by the second and third year, to be working up PhD chapters into separate papers which can be submitted for presentation at these and similar conferences. Conference costs are often quite high, and there is limited financial support available from the department for PhD students. Disabled PhD students can anticipate additional costs arising directly from their condition, for example using taxis rather than public transport.

 

  • Using appropriate libraries to conduct research: As the demands of doctoral research are more akin to those of a professional academic than an undergraduate student, PhD candidates must use libraries with appropriate resources to conduct their research. In addition to using the home university Library, PhD students are expected fully utilise sites such as, if one is located in or around London, the British Library, the Senate House Library or specialist collections housed at a number of University of London colleges. Inter-library loans are sometimes inadequate for research at doctoral level and above; while they are sufficient for undergraduate students and taught post-graduate students with clearly defined reading lists, they are not always suitable for research-based degrees or for professionals working in academia. While any PhD student may have access to strategies to reduce this demand, such as utilising online journal articles and digitised content where available, this is insufficient to meet the full demands of her PhD and itself should not preclude access to libraries when necessary. Given that some disabled or chronically ill PhD students may be unable to use public transport because of their condition, alternative strategies for accessing these libraries within the limitations of the condition are essential.

 

  • Teaching responsibilities: Since a PhD is not just a qualification but a process understood as preparation for employment as a professional academic with both research and teaching responsibilities, almost all PhD candidates seeking future employment in academia are expected to teach undergraduate courses broadly related to their specialism. Teaching commitments are often relatively light, and will often take place on days where other PhD-specific activities are also occurring, such as supervisory meetings, reading groups, lectures, etc.

 

Is this an exhaustive list? Is there other, perhaps discipline specific, information we could add to this list? Are there any further points that we could do with adding to those already started here?

Tell us in the comments and we’ll update the post to reflect any omissions so that future PhDs negotiating future DSA arrangements or similar might not, as so often happens, have to reinvent the wheel again.

 

Got a story, argument or analysis at the intersection of disability, chronic illness and being a post-graduate researcher in higher education to share? We’re always looking for contributions so send us an email.

Image: Study, From the Door by Krista Kennedy (flickr). Licensed under CC BY-NC-SA 2.0.

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4 responses to “Disabled Student Allowance & PhD-Specific Doings: A Resource for Self-Advocacy

  1. I really can’t get my head around how new PhD students are supposed to know in advance what kinds of activities might apply to them and what kind of support they might need. Let alone how varied a PhD experience can be even within the same subject, I’d hate to think of anyone having exciting opportunities closed to them just because they weren’t able to predict them. There are a whole range of things – like industrial placements, enterprise projects, exchange opportunities and more – that are unlikely to come planned. Where do you go then for support if it’s needed?

  2. A large potential extra cost is accommodation, transport, food, etc for my carer/PA when attending conferences and talks.
    However I found that, if asked, the conference organisers were generally very willing to waive the entrance fee and accommodation costs as a “reasonable adjustment”.
    But if you know that this is going to be a potential cost, I would definitely raise it at the start of the PhD. You don’t want to have to rely on the goodwill/disability awareness of conference organisers.

    I would add that simply being able to *have* a carer was problematic in itself as I was not eligible (and did not need) 24/7 care. However if I went away for a conference, I needed a carer with me at those times I required help (at least 2-3 hours per day). It was generally impossible to arrange to find a carer in the location the conference was taking place, yet my normal carer couldn’t afford to drop everything and come with me with what I could afford to pay her.
    Social services wouldn’t pay any extra and DSA won’t pay anything towards personal care, so I was generally stuck to put it mildly.
    In the end I had to rely on close friends and family to help. I was lucky that my best friend happened to be doing her PhD in almost exactly the same specialty as myself and we attended nearly all the same conferences.
    But it was and is an unacceptable solution. If anyone reading this has a better one they can share, please, please do.

  3. Pingback: Jade’s Faves – Getting My Life through Blogs & Vlogs | Jade T. Perry·

  4. Pingback: Philosophy, Disability, and Chronic Illnesses | Daily Nous·

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