Saturday, 14 July 2018

What neurodiverse, chronically ill and disabled academics do to manage life in academia

Written by Nicole Brown

Being chronically ill, neurodiverse, and/or disabled means that adjustments have to be made in life. Quite naturally, the symptoms of illnesses, neurodiversities, and disabilities also affect one’s working life. This is, of course, equally true for academics, although they are often seen to be privileged. The digital health community and advocacy web site The Mighty has recently published a contribution on impolite behavioural strategies that those with chronic illness engage in to protect their health as much as possible.

Many of the behaviour patterns mentioned can be transferred directly or in some modified, translated form to serve as coping strategies for academics. This is exactly what I am doing in the following. Drawing on the original list from The Mighty and on conversations with disabled, ill, and neurodiverse academics, I provide a non-exhaustive list of coping behaviours in academia.

  1. Saying “no”

  2. Institutional citizenship requires academics to take on extra roles and responsibilities such as attending events, getting involved in planning and marking, and representing departments; the tasks are unlimited. Saying “no” is not an easy decision, but in order to protect body and mind “no” becomes an important word and therefore needs to be accepted and respected. Saying “no” does not make academics traitors to their institutions; it actually means the opposite: the academics are loyal to their students and workplace and are trying to make sure they are able to keep up with existing workloads and do not risk burnout.

  3. Rescheduling

  4. Many academics with disabilities, illnesses, or neurodiversities are overwhelmed with the tasks on hand, but they are still very keen to be fully involved in institutional life and decisions. They may just need some extra time or space for that. Rescheduling meetings and conversations is therefore particularly important, for the academics themselves but also for those involved in the decision-making meetings. After all, it is not in the interest of anyone to finalise decisions or documents under the influence of sensory overload, pain, fatigue, exhaustion, or any other symptoms. The flexibility of rescheduling means that the work the academics are contributing will be of a higher standard and the best possible quality. And sometimes, it may just be enough to allow for remote participation via email or video-calling facilities.

  5. Secluding oneself

  6. Many people with chronic illnesses, disabilities, and neurodiversities need their own space and time for themselves to which they can withdraw. For some, this may mean physically removing themselves into a quiet room where stimulants are limited. For others, this may mean resting or even taking a nap. For others still, it may just mean that they do not wish to network or engage in conversations. In a working context like academia, where networking and representation at events are everything, this is obviously very difficult to achieve. Therefore, the onus must be on all of us to create an environment where withdrawing from demanding situations is not seen as rude, but as a different way of working.

  7. Being assertive about needs

  8. This is in line with the previous points. All of us know for ourselves what makes us comfortable and productive and effective. So, therefore, any kind of workplace adjustment needs to be encouraged. This may mean offering a private office rather than an open-plan office – not because those with illnesses, disabilities and neurodiversities want to be treated differently, but because stimulants like noises, smells, lights or the flow of air (air-conditioning, heating, windows) cannot be suitably adjusted for each individual’s needs. Similarly, sunglasses, socks, blankets, pillows, backrests, and footstools are all items that can easily be provided. The message here needs to be that none of these items (or, indeed, any other support gadgets) should be ridiculed or envied. They are means to ensure productivity. Equally, being assertive about one’s needs includes strategies like staying away from work to avoid sick people during flu-season, asking not to be interrupted in order to maintain one’s stream of thoughts, not standing to greet someone, bringing one’s own food and drinks, and so on.

  9. Leaving

  10. Finally, and as important as the previous points, academics may need to leave. This may be leaving early to seclude themselves or to attend a doctor’s appointment, or this may be sick-leave. Many academics with chronic conditions feel under pressure to perform and produce so that they are pushing through acute flare-ups instead of allowing themselves a day or two to heal. In this sense, working models for flexible hours are probably the most feasible, sensible, and effective strategy for both academics and their employers.

For many, this list will include things they do to pace themselves and manage their needs. But for many other academics, this is a list of things they would like to do but feel they cannot. Academia is seen as an environment where there is no space for weakness, vulnerability, or anything less than being fully productive.

I am hoping that with the top-5 items highlighted, it may be possible to raise awareness of and increase empathy for the experiences of academics with illnesses, neurodiversities, and disabilities. Naturally, experiences of illnesses, neurodiversities, and disabilities need to be seen individually, but there are common traits affecting all non-neuro-typicals. And understanding and tolerance are what is needed most, after all.

Recent publications

Brown, N. & Leigh, J. S. (2018). Ableism in academia: Where are the disabled and ill academics? Disability and Society. DOI: 10.1080/09687599.2018.1455627

Brown, N. (2018). Exploring the lived experience of fibromyalgia using creative data collection methods. Cogent Social Sciences. DOI:10.1080/23311886.2018.1447759

Brown, N. (2018). Video-conference interviews: Ethical and methodological concerns in the context of health research. SAGE Research Methods Cases. DOI: 10.4135/9781526441812

Brown, N., Jafferani, A. & Pattharwala, V. (2018). Partnership in teacher education: developing creative methods to deepen students’ reflections. Journal of Educational Innovation, Partnership and Change, 4(1). DOI: 10.21100/jeipc.v4i1.747

Brown, N., & Janssen, R. (2017). Preventing plagiarism and fostering academic integrity: a practical approach. Journal of Perspectives in Applied Academic Practice, 5(3), 102-109. DOI: 10.14297/jpaap.v5i3.245

About the Author

Headshot of Nicole Brown
on a plain background.

Nicole Brown is a Lecturer in Education at UCL Institute of Education, and a doctoral researcher at the University of Kent. Her research interests relate to ableism, identity and body work, physical and material representations and metaphors, the generation of knowledge, and advancing learning and teaching within higher education. Contact details: Web site: Twitter: @ncjbrown @FibroIdentity @AbleismAcademia

Tuesday, 26 June 2018

‘Not What I Paid For’: Ableism, Evaluations and the Academic Life

Written by Aparna Nair

It was that time of year again.

The semester drew to an end and the university sent us enthusiastic email reminders to get students to evaluate our courses. ‘Evaluate NOW’, screamed the emails and signs posted all over campus. This semester, I caught myself instantly deleting that first notification as well as the later more urgent reminders. It was a futile gesture, since I nonetheless made sure to get my classes to fill in the evaluations. But for the first time in my academic career, I was genuinely anxious about the impending possibility of reading an evaluation report. Admittedly, 2017 was uniquely rough. A stressful year teaching seven courses was complicated by personal losses and the low hum of rising anti-immigrant sentiment, making it one of the most difficult of my life. I spent most of the year in a haze of auras, as my epilepsy had become rather recalcitrant.

And then I got these comments in my student evaluations:

I know she is sick. I know that she needs to sometimes bring her support dog into the class. I get it. But she missed classes. I know her TA took over, and that she caught up when she returned. But that is not what I paid for.

I expect more.

I don't want to hear about her illness. She gets paid to do this. WE are paying her to do this. She just needs to stop talking about it.

Even as I type the words, the shame rolls over me.

Evaluations like these raise the question of how academics who openly lay claim to disabled or chronically ill identities should respond when students demonstrate open, almost casual - certainly deliberate - ableism in evaluations. There is nothing in the faculty handbooks, endless trainings and workshops about being confronted with such blatant ableism.

I have lived with epilepsy for a very long time--I was diagnosed at the age of 11. In the deeply traditional and conservative South Asian cultures where I grew up, difference was neither encouraged nor tolerated and conformity was consistently rewarded. As a result of my illness, I experienced isolation, marginalization, derision, stigma and violence. After nearly two decades of concealment, I made a conscious decision to stop pretending that epilepsy was not a serious part of my life. Why, I thought, should I deny something that impinged on my every waking hour in ways that people rarely comprehended? Why did I need to pretend I was ‘normal’ (which my family had desperately wanted me to be) when I knew how illness marked me as different?

So, I ticked off the ‘Yes, I have a disability’ box when I applied for the position I have now, nervous and uncertain as to whether it made me just too marginal for a deeply conservative public university. I lay open claim to an epileptic identity as being part of the reason for my research agenda on disability studies and disability histories in South Asia. I design and conduct workshops on disability in university settings with a wonderful collaborator, and discuss what it means to be a chronically ill faculty member and how to ensure that our classrooms are accommodating and welcoming to disabled and chronically ill students. I publish autoethnographies on epilepsy in South India.

And every semester, my hands still shake when I tell students that I am epileptic in that first introductory session of every course. I strive for a matter-of-fact tone, and tell the classes that while this is not something I would usually share, there may be some times in the semester that my illness becomes uncontrollable and I might need to cancel a class. I then reassure them that this is factored into their syllabus and semester planning and that they will not lose out in terms of learning. Interestingly enough, my disclosure has consistently impelled students to share their own chronic illnesses or disabilities with me in private and I am very grateful for this, since it means I can make accommodations for them and design the class around their needs as well. But I have also come to realise that my initial fears about this act of public disclosure were not unwarranted.

For most of my teaching life, evaluations have always been the space where students expressed themselves anonymously and openly about their professors, without fear of reprisals. Evaluations can be funny and frivolous; trite and tough. Most of us who teach have been embarrassed at some point or the other by what seems to us sometimes unfair, occasionally inapposite ‘bon mots’—from comments on our sartorial choices (‘I loved his t-shirts’ to ‘He wore the same shoes all semester long’) to condemnations of our general affects (‘She is very opinionated! And expects you to agree with her’) to the student’s pondering what on earth we were doing in our chosen professions (‘I don’t know why he is teaching, clearly he is happier in the lab’). But evaluations can also be serious and help us adapt our teaching styles, our evaluation methods, our reading assignments and other pedagogical choices. I learnt that students liked blogging, but that they did not think that they had enough time to work on their exercises in class. I learnt that students will always have mixed opinions about group work, but that it is nonetheless useful. I learnt how the complicated courses I taught on race and empire and disability were received emotively and intellectually, and those responses were profoundly important in developing my courses in certain directions. So I had accustomed myself to opening my evaluations with the certainty that I would find useful information on my course design and assessments along with the more frivolous comments.

But I am at a loss as to how to respond to the casual ableism in my student evaluations, ableism which will become a part of every job application, every promotion and tenure application. It will be misinterpreted and decontextualised by committees and administrations and will eat into my teaching accomplishments or my research portfolio. For many people who see these comments, my epilepsy will circumscribe my abilities and skills.

How then do we respond to ableism in evaluations? I must admit, I am left only with questions. One option is to mention nothing of epilepsy at all in my classes. But it feels dishonest and just wrong.

So I can tell you how I have learnt to cope. I try to focus on the students with whom I seem to be connecting, the ones whose work is wonderful, who challenge me in class and whose presence in my classes is a true joy. And there are many of them. I have begun conducting my own evaluations in class, asking students what worked and what did not—and these are often more detailed feedback for adapting my pedagogical approach in different classes.

My methods do not always work. I sometimes feel like Sisyphus, and wonder if there is any point. I wonder if the affective (and physical) toll of being ‘out of the closet’ in academia is worth it at all.

And, in the meantime, it is more than a month since my evaluation reports were published. I still have not clicked on the link that takes me to the report.

Maybe next month? Or maybe not.

About the Author

Aparna Nair currently works as Assistant Professor in History of Science at the University of Oklahoma-Norman. She teaches on disability, race, empire, medicine and public health and her research explores colonialism and disability in British India as well as the meanings of chronic illness in modern south India. She blogs at

Sunday, 18 March 2018

Disableism in Academia

Written by Sonali Shah

Disablism in academia has struck me down twice since I got my PhD and started on the academic career ladder. I am currently in the middle of the second bout, which I will go into later. First, let’s rewind my career trajectory to 2010, when my Nuffield Career Development fellowship in Disability Studies ended. Although I had been at my institution for three years, earned a pretty positive reputation in disability studies and been returned to REF 2008, no other opportunity was found for me and I became unemployed. The fact that I was in the middle of writing my third research monograph (co-authored by a non-disabled prof in Disability Studies – as they all seem to be) earned me an associate position with access to library resources and very minor bits of paid work. During this unpaid break of 18 months, the research monograph was published and I submitted an Economic and Social Research Council (ESRC) research grant proposal and did some voluntary work at the World Health Organization (WHO). Just before my internship at the WHO, I secured a 3 year university research fellowship within the same institution, which would start when I returned. Before my interview, I was awarded the ESRC grant I had applied for, which was obviously very attractive to the University and got me the job. While in that role, I was managing large grants and other staff, convening and teaching Masters courses and supervising undergraduate and Masters students.

So, 2 years, 3 books and 10 articles later, I wanted a promotion like my non-disabled colleagues who, while I was unemployed for 18 months, had zoomed past me on the academic career ladder. I thought it would be a good opportunity to ask for promotion as I was already working at a Grade 8 level doing the same work as other Grade 8 staff and yet I was still Grade 7. However, I was discouraged from applying for promotion by my line manager. A new post came up in the Centre for a Grade 9 Lecturer. My line manager said I should apply. I got an interview. I was not successful. Later I learned that the staff on the panel and in the Centre already knew I would not be successful, even before the interview.

After two years in this research post in Disability Studies, I applied for a Lord Kelvin Adams Smith (LKAS) fellowship with a research centre in Scotland. This was a four-year fellowship with promises of a permanent post if all objectives were met - teaching, publications and research. Again, I had a research grant under my belt. Again, I got the job and took the grant with me. My previous institution was a little taken aback when I left and took most of the grant with me, but my new employer agreed to employ me at Grade 8. On a personal level, this decision to take a post in Scotland meant finding an accessible flat in Scotland, finding personal assistants in Scotland, and commuting from my home in England to Scotland and vice versa every week. The question of moving to Scotland was not an option at that stage as my husband had a permanent job in England. So a commuter I became, with two cars, two beds, two sets of Personal Assistants, two lives, and many, many air miles, but that is another story. I wanted this job, a chance to shine and to have a permanent contract; or so I thought! I was one of 6 LKAS fellows in the faculty. I was one of three women, but the only BME woman, and the only BME disabled woman

Fast forward to year four of the fellowship; feeling positive, with 4 more publications, 3 years convening and teaching an MSc course with very positive student feedback and a book contract, I thought I had built enough of a reputation to progress to a permanent post like my 5 fellow LKAS colleagues. While I had not managed to secure any large funding grants, I had submitted several large grant applications with colleagues. In most cases we had passed the first stages. This was not unlike the other LKAS fellows. However, unlike the 5 other LKAS fellows, I was facing multiple barriers to do what I needed to do and get where I needed to go. For instance, the course I taught was on the 9th floor of a tower block and when there was a fire alarm in week 5 during the class, no one came to check I could get out. I couldn't so I stayed there! Another difference was when I was invited to a single candidate interview to progress to a lectureship post, the decision had already been made to make me redundant. That was the second swipe, knocking me off the career ladder once more.

Although my new book 'Global Perspectives of Disability Violence and Gender: A Life-course and Human Rights Approach' will be published by Routledge in May, and I do not have the stress of academic life, I get angry about having my upward career trajectory constrained every 4/5 years until I reach another turning point. It's frustrating because my personal agency seems to be overshadowed by disabling structures and lack of enabling policies for disabled staff. I am not unique here, but this means that the field of Disability Studies is mainly run by non-disabled academics.

About the Author

Dr Sonali Shah is committed to research, scholarship and teaching that matters and makes a positive impact to the global challenges of equality, inclusion, health and social well-being of disabled people across intersectional identities and the life course. She graduated with a PhD in Occupational Psychology and Disability at Loughborough University in 2002. Her forthcoming co-edited collection, Disability, Gender and Violence (Shah and Bradbury-Jones. 2018) brings together academics, practitioner and survivor voices from across the world to discuss experience of violence, barriers to disclosure and support for disabled women from childhood to older life.