The Adjusted PhD: What Accommodations Work(ed) For You?

Skateboard wheels in different colours arranged in grid formation display on a shop wall.

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)

 

 

 

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11 responses to “The Adjusted PhD: What Accommodations Work(ed) For You?

  1. I’m currently struggling with a different sort of chronic illness and am unsure if it fits into this discussion. I’ve struggled with an eating disorder, anxiety, and depression since high school and have somehow made it to a graduate program in biomedical engineering. I’m currently on a leave of absence, trying to deal with this problems through more intensive treatment. I’m curious if anyone has advice dealing with advisers or programs in terms of chronic mental conditions which are often regarded as less serious or trivial in comparison to physical diseases. What sort of accomodations are reasonable to request? I frequently feel guilty asking for any assistance as I think I
    “should” be able to deal with graduate school just like all the other struggling graduate students.

    • Ann, you sound a lot like me in some ways. I also have a chronic illness and am a post grad student. I also usually feel I “should” be able to deal with it all just like everyone else (i.e. all those without chronic illness). I spent a large portion of this semester (late Feb until end of June) in hospital or at home and unwell. I already had a disability plan (which was actually relatively easy to get at my university and automatically gives me the right to 2 week extensions on papers) but I had to apply for more accommodations as I was unable to read for a while (inability to focus due to meds) and my hands were out of action for a while so I couldn’t type. As far as asking for accommodations, think of the specific issue/s you have that are causing you to be unable to work and then think of what make it easier for you to address that issue. I was able to get longer time for exams because of my issue with reading (I could read but it just took me a lot longer to read because of my inability to focus). I am sure my lecturers and thesis supervisors wonder what the heck is wrong with me because obviously they know I have a disability plan but they can’t see what is wrong with me (invisible chronic illness) and unless I tell them, they don’t know. I don’t tend to tell them much other unless I feel comfortable to do so (which I usually don’t). My disability plan means I have provided evidence that I have a disability (medical report from doctor) and so they have to give me the accommodations that the Disability Services unit says they have to. I think the unit at my university is pretty good considering the tales I have heard from other people at other institutions. Without knowing you specifically it is entirely reasonable to ask for extensions on essays or papers, extra time in exams, accessible venues etc. I figure if you don’t ask you won’t get it, so go for broke and ask for whatever you think will make it easier for you. The worst they can say is no. Best wishes.

    • I’ve got ‘severe & enduring mental illness’, also dyspraxia. I did my undergrad without much support, and that was a really bad experience which I dropped out of, came back and scraped through. I’ve had a much much more positive experience with my Masters (Public Health). Some things which helped me were:
      – Flexible schedule where possible, so I could take time off during the working day – particularly important for group therapies, and avoiding early mornings when my meds leave me hungover. For example, I did some second year modules in my first year to avoid clashing with self-help groups.
      – Mentoring – I’d meet up with someone between twice a week and once a fortnight, to plan my time, workload, and how to manage the week ahead, and coach me on using time-management and stress-management skills, so I didn’t feel as though everything was piling up on me at once and just hide in bed overwhelmed. Mentors also helped me with extra disability-related paperwork & advocacy.
      – A really awesome supervisor – I nominated my supervisors for the university-wide Supervisor of the Year award, and found out today that they won! My lead supervisor in particular was consistently positive, encouraging, and willing to take extra time to do things which I said would help me, like planning my dissertation writing timetable over a year to minimise last minute stress. They were also marvellously un-phased when I sent them confused emails about spies hiding inside my laptop.
      – Extensions – I got a really long (6 month) extension for my dissertation, so I didn’t have to work on it at the same time as taught modules, and my supervisor sorted the paperwork & advocacy for this well ahead of time. Unfortunately though, I wasn’t allowed regular extensions on routine essays, even though my reasonable adjustment plan said I should be.
      – Equipment – laptop so I could work wherever I felt least paranoid, headphones to cope with busy environments, and I used my DLA to pay for a Spotify subscription which is a huge help for my voices & messy thoughts.
      – I also use my DLA to pay for various things to save me time & effort round the house, like reasonably healthy microwave food for when I’m too tired & confused to cook safely, & I pay a housemate to do my share of the chores when I’m tired & overwhelmed.
      I’ve explicitly identified as a disabled student for this degree, when I haven’t as a undergrad, and it helped a lot. I’ve got help from the disability office, gone to a few disabled students group meetings, and developed an online network of other disabled students who share useful ideas & coping skills.

      • Cerl — what position were the mentors who assisted with time-management? I’m an MS student, have been invited to continue into the PhD program (still debating this), and am taking my first PhD course now. Assignments are significantly larger than in the MS courses and this is the one accommodation that would really help in making continued PhD coursework manageable.

  2. I’m glad to have found you! As you can see, my WP blog is a place to write about the science I love. My disability is no secret here but I prefer to discuss it elsewhere. So I’m one of the academics you mention, who don’t always want to be ‘that disabled one’! Otoh since my disability became visible, I’ve come to appreciate being a role model to undergrads. ‘I went to my PhD viva in *this wheelchair*! You could do it too.’

    Before I answer some of your questions, I’ll point out that the numbers you quote are about *full-time* PhD study. For many of us, part-time studying and working are essential adaptations. My PhD supervisors (the one I started with, and the one who took over when the first one moved to a different University) aren’t disabled sfaik but they’ve been great. Suggesting needs that I didn’t yet know I had; writing offical requests for extended time for my thesis hand-in.

    Now for your questions, some of which I’ve already answered.

    > Have you completed a PhD with a disability or chronic illness?
    Yes I have. It wasn’t visible for the first few years, but I knew about it! In fact, at the end of my viva I told the examiners why I’d done a PhD at all. Bucket list.

    > What accommodations did you request?
    Extended time to complete my thesis. Couldn’t have done it without that.

    >Which accommodations worked best for you, and in relation to which practical requirements of your condition?
    Preparing for my PhD viva I asked for, and got, a wheelchair-accessible venue adjacent to a suitable toilet. I also asked for and got, permission to eat my own packed lunch during the viva. Therefore my examiners’ sandwiches were delivered and we ate together. After lunch they’d some Millionaire’s Shortbread left. I couldn’t let that go to waste could I? So I became the only person I know to have been given chocolate during their viva.

    >Which accommodations did you try that were less successful, and why?
    None during my PhD but since then, I’ve started teacher training (towards AFHEA) but quit because of ablism that wouldn’t budge. I’ve written about this http://friendly-crips.livejournal.com/205844.html

    >Have you supervised PhD students with disabilities or chronic illness?
    No but if academia were more crip-friendly, I might be supervising PhD students by now. It’s not likely to happen within my lifespan.

    >Are you a disability support advisor?
    No, but informally a role model as mentioned above.

  3. Hello! Just found your blog via ScholarSunday.

    Have you completed a PhD with a disability or chronic illness?

    Yes. Technically, both, I think.

    What accommodations did you request?

    Very few. I would not recommend this! At the end of my PhD, I asked for accommodation to be made for proofreading. However, my supervisors had suggested and made many accommodations without needing to be asked, eg., they never required me to read aloud to them and adapted to me working from memory in supervisions rather than from a copy of my drafts. They did not pick me up on typos very much (but see below on whether this worked!). They also recommended ways to adapt conference papers and recommended I email my examiners with lists of errors post-submission and pre-viva.

    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?

    The suggestions by my supervisors were useful, in that they enabled me to concentrate in supervisions and to follow what was being said. I learned to adapt conference papers so I didn’t have to read aloud but could memorise most of the text.

    The lack of comments on typos in drafts was probably very good for my confidence. However, a major difficulty was that I did not realize how many typos I made in my work, and my supervisors did not realize I did not realize this until very late on. I think this is a big problem, actually: people assume disabled students must be well aware of what they are doing that is non-standard or (worse) liable to make them fail. In my case, I have very little way of knowing whether I’m making SPAG and typo errors, because part of my disability is that I don’t easily notice them. So this is a story of good intentions going a bit awry.

    Have you supervised PhD students with disabilities or chronic illness?

    Nope, so the rest of the questions are N/A!

    Hope this is of use.

  4. I also became a disabled academic until the illness progressed to a point where my research had slowed below snail’s pace! I think it vital for people like us to share what we did. Although everyone is different, some issues will be shared and there is always a chance that someone’s solution might help someone else.

    >>Have you completed a PhD with a disability or chronic illness?
    Yes. To both. I’m being a bit nitpicky here because both presented very different issues.

    >> Which accommodations worked best for you?
    Disability “stuff”:
    Accessible office, lecture rooms, seminar rooms, supervisor and group meeting rooms. Adjustable desk.
    Office on same floor as supervisor so no need to use lift (very busy at peak times)
    Funding for wheelchair accessible car for conferences.
    Funding to buy a second small folding electric wheelchair for use at certain conferences and use around the office (some buildings are old and doors are not large enough for standard wheelchair)
    Accessible accommodation at conferences
    Accessible seminar rooms and podium at conferences (podium very important and not always thought of)
    Funding for room for Personal Assistant at conferences
    Funding for Note taker at seminar/conferences
    Adapted PC/laptop+software

    Other:
    Allowed to work from home as much as I liked
    Laptop+printer+funding for broadband to work from home
    Timetabling changes: Meetings+PhD seminars scheduled for mornings
    Meetings conducted via Skype
    Agreement with supervisor to pace working according to illness: slack off during flares, work more during good patches, or alternate type of work, eg research vs. background reading.

    >>What didn’t work?
    Personal care is not funded by the university. I didn’t get 24/7 care from social services. Yet I needed that person to come away with me for the entire conference. It is all very well paying for their accommodation, but how was I supposed to pay them for their time away? No one paid the difference. I was forced to rely on friends/family.

    There was no system in place to rent wheelchair accessible cars by the university. I had to pay myself and claim it back months later. I ended up using the usual system and taking the more uncomfortable folding chair instead due to affordability.

    The admin to get accessible rooms was terrible and the source of many unnecessary problems and nastiness. Trying to sort out conferences could also be difficult. I finally sorted it out by writing a standard letter, but the initial conferences were a nightmare.

    Note taking in seminars seemed a good idea in theory but in practise just didn’t seem to work out. I don’t know whether the content was just too specialised but the notes were rarely of good quality.

    Skype/similar was tried for seminars when I was too sick to go in. It didn’t work very well. The speaker rarely stayed in view of the camera and audio was poor.

  5. Spoonydoc’s post reminds me to add: I also had issues with poor quality work, in my case proofreading. There was an assumption if I couldn’t proofread, surely my husband or a friend could help out (which is a whole issue in itself really)? Answer: no, they couldn’t. Nor could the ‘specialist’ professionals, not on short notice at least.

  6. Have you completed a PhD with a disability or chronic illness?
    I am ABD in my Ph.D program, -*just* need to write the dissertation. The onset of my illness happened 1 month into my Masters.

    What accommodations did you request?
    During my masters I was just floundering to stay above water. I wish I had contacted the disabilities department at that time. I did when I started my Ph.D. I knew that I needed accommodations for my comp readings (200 books, a paper every 5 books and a 3 hour one on one class with a prof, and mid-term comp exams, and final comp exams).

    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?
    The accommodations worked well for the exams itself. I was able to write the exams in my own room, with extra time for breaks and most importantly I was able to type on a laptop while lying down. I was advised to break the exams over two days, but I declined to that. Looking back now, maybe it would have been better? I’m not sure. Also, because I registered with DSS I am eligible to receive student loan disability grants, which has been extremely helpful in paying for medical costs. I wish I had accessed it sooner.

    I did not inform any profs or my advisor of the extent of my illness. I still haven’t. It is something I struggle with. There was a point where I was so sick I had to get a doctors note and not pick up a book for a week. And that time I just sent the dr’s note and no one cared or asked questions. When I had to arrange my exam dates separate from the other students through DSS I mumbled something about “back problems” to my profs. When I actually wrote the exams the DSS was so confused with my exams, it was obvious that DSS had little experience giving exams for graduate students.

    The 3 hour straight (sitting!) meetings, sometimes no breaks were so hard. I got unlucky and was the only student in 2/3 classes I took, which means I had to answer every question. It was tough. I passed comps, but I know without a doubt my marks were lower because of my illness. And my progress continues to be slow because I lose a lot of days – which I can hide because I work from home and the guidelines are not strict. No one checks in on me. I wasn’t ever able to use my office (shared with two other people) because I can’t sit for long periods of time. I eventually gave up the office. I miss having the social contact with other academics.

    I really appreciate this blog. It is nice to hear from other disabled academics. I worry about my future career.

  7. 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?
    Yes I have. I did it part time whilst working and requested no accommodations although my supervisor was aware that I had some medical issues. I think a key issue here is the nature of the disability/ chronic illness. I have a number of conditions, some of which bore no relation to my ability to complete a doctorate. Other conditions did impact. I actually did an EdD and found the taught part more challenging due to the pressure of deadlines. The part time thesis was great as it gave me complete control over when and when not to work . In general, for someone with health issues, I think the part time route gives greatest flexibility, although I actually opted for it because I had an imperative to work. I successfully completed in 2007. I have found working as an academic more challenging and took redundancy from one job where there was no accommodation made for two of my ( worsening) conditions. I remain in academia but do not find it disability friendly in general. However my conditions are in the main invisible and this may be a factor. I do find sitting and using stairs difficult but can generally hide this except in long meetings. I now excuse myself and walk about if necessary. I have also taken hot water bottles to meetings ( they are one of my preferred forms of pain relief) . I have realised that I need to work at being as well as I can be so I make considerable efforts to manage my workload effectively. My efforts are often sabotaged by unthinking individuals and I am slowly learning to say no politely without feeling the need to justify myself. To my knowledge I have not supervised any disabled students but would always negotiate accommodations in advance. I think key factors in successful completion are mental stamina, dedication and determination. It is a very hard road for anyone. I am very pig headed which undoubtedly helped! ( and It was one in the eye for the long dead teachers who thought I should be in special school!) In general I would use the same support strategies with a disabled student that I use with all my students: manageable and flexible work plan with agreed priorities which work with an individual’s life; agreed contact frequency and preparedness to move to plan b. I have lots of other strategies too!

  8. Have you completed a PhD with a disability or chronic illness?
    Working on it, but I should defend in spring.

    What accommodations did you request?
    None really through the university directly, but worked out with my advisor a system for working remotely through video chats and GitHub repositories.
    Which accommodations worked best for you, and in relation to which practical requirements of your condition?
    Working remotely has been very helpful, my lair is set up perfectly to maximize ability to work:
    Computer monitor risers, kneeling chair, split keyboard, hot water bottle wrist pad at desk.
    Near desk, giant fluffy armchair for needing to rest with electric blanket to act as full body heating pad.
    Bathroom nearby with grab bar.
    Leather gloves to reduce hand sensitivity.
    Ability to wear maximally comfortable clothes on days when I feel like I rolled in a patch of stinging nettle.
    Found Google Hangouts worked better than Skype for me.
    Having all of my research up on GitHub is good programming practice anyway, and it works more smoothly than saving up all the problems for my weekly meeting with my advisor, so it’s just an improvement all around.

    Which accommodations did you try that were less successful, and why?
    Going into the office for shorter periods of time- the trip to the office was a major killer, and once I actually got to the office, I was pretty wiped out.

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