Saturday, 10 November 2018

Designing a Disabled and Ill Researchers’ Network

Written by Kay Guccione (Researcher Mentoring Consultant) and founder members of the University of Sheffield Disabled & Ill Researchers’ Network: Chris Donaldson (PGR in the Medical School), Peter Dory (PGR in English), and Isobel Williams (post-doc in Psychology).
Image of the Disabled & Ill
Researchers' Network logo which
is a blue square with the name
of the network and a plus sign on
a black circular background.

Nobody embarks on a PhD thinking it’s going to be easy, but disability and illness can make researching a thesis that little bit more daunting, exhausting or isolating. The Disabled & Ill Researchers’ Network is a group for postgraduate and postdoctoral researchers who are managing PhD study alongside a disability, impairment, injury, or physical, psychological, and/or mental health condition.

"The biggest issue I face in my research is fatigue management. It's never easy to judge what might send me into a long, unproductive slump. I'm lucky enough to have understanding supervisors, but there's always the worry that I might slip too far behind."

The Network launched at the University of Sheffield in March 2018. It’s one of three new peer-networks for researchers at Sheffield (see also: the Emotionally Demanding Research Network and the Parent PGR Network). These new researcher communities are a part of our Researcher Wellbeing strategy, combining lots of initiatives that work across different researcher groups.

At Sheffield we use a 'Google Community' website but you could make use of any online space that works for you. A Facebook group, a Wordpress site, an email mailing list, a Slack channel or any other intranet or messaging system you prefer. Through our online space, and face to face events, the group aims to provide a forum to discuss problems, share strategies, and campaign for greater awareness of researcher disability and illness and its impact on study.

“I had perhaps naively expected all members of staff at a university to be ‘disability aware’ – particularly those who work in patient-facing departments and therefore work with disability and illness for a living. That was not the case, and I came across some ignorant-bordering-on-discriminatory attitudes. I was, however, lucky to have understanding supervisors and PGR leads who allowed me to work in the way that was right for me, and fought my corner when necessary.”

In our first meeting we started with an open forum to surface some of the big discussions, we compared experiences, how they matched with the expectations for study, and the university processes and systems that support this, or make life more difficult.

Hot topics ranged from the very cultural, to the very practical:
  • Patchy awareness in departments of the needs of disabled and ill researchers to manage their own time and energy — this can lead to overstepped boundaries. e.g. treating disabled researchers as if they are ‘lazy’ if they decline opportunities or say no to them, or using power relationships to force participation, or insist on longer working hours.
  • Awareness of how physical health can impact on mental health. If a disclosed disability is ‘physical’ then a PhD researcher may find themselves are excluded from support for mental health.
  • Low awareness of key contacts who can support Disabled & Ill Researchers’: e.g. Departmental Disability Liaison Officers.
  • Application for support and communication processes can vary between different services, academic departments, health services, and key contacts meaning that they can take a long time and errors can be made, or information lost.
  • The number of Accessible workspaces on campus is not adequate or well mapped.
  • Taking a Leave of Absence (suspending PhD study for a period of time) — which is particularly pertinent to ill and disabled researchers:
    • Financial exclusion from taking a Leave of Absence due to it being an unfunded period of leave.
    • How to best organise and manage a phased return from a Leave of Absence
    • Supervisor(s) awareness of Leave of Absence processes, and their permission or encouragement to use the process.
    • The ‘current climate’ of research (deadlines, submission times, pressure) and the difficulty of taking time out.
    • A Leave of Absence isn’t a ‘cure’ and we shouldn’t expect that researchers will return ‘fixed’ and without ongoing issues to manage.

"I think my biggest issue has been adapting the skills I've learnt to a research environment - particularly for students with disabilities and SpLDs, I don't think your degree prepares you for how to manage your time, how to balance your different responsibilities. I've also struggled with a great deal of people not understanding how my disabilities/SpLDs affect my learning and how I carry out my PhD. Finally, when I've needed time away, I don't feel as if I've been able to take it - I simply wouldn't be able to afford to live, as you lose funding for time you take on leave of absence."

To make sure that the fledgling network would grow and have strategic impact, the group decided that our immediate priorities were to develop:

  • An online space where we can all share information, resources, ask questions and support each other;
  • Partnerships to influence strategic processes and policies related to research staff and students and ensure representation;
  • A series of blogs sharing the stories and experiences of disabled and ill researchers (here’s the link to the growing series) that can be put to good use at researcher inductions and pre-recruitment;
  • A guide for PhD study with a Disability or Illness, my excellent colleague Chris Donaldson has joined me to co-author this study guide;
  • A campaign related to academic and professional services staff disability awareness training;
  • A disability/illness disclosure pledge campaign — encouraging postgraduate researchers to disclose disabilities and illnesses and have open conversations with their supervisors about the best way to manage their health and study.

"Ideally, I'd like to see the initial disclosure be the beginning and end of all bureaucracy surrounding disability and illness for PGR students (well, all students really) - no having to worry about justifying extra provisions or leaves of absence, piling stress onto an already stressful undertaking.”

“The big change I want to see implemented is paid sick leave for PGRs from all funders. It's not always possible to financially support yourself when you're unwell, especially if you're a student from a lower socioeconomic background.”

“The fact that I feel ‘lucky’ to have the support I did, says something about the current state of disability awareness in higher education. Everyone should have the support I did. I think we can get closer to that by training staff around how they should be supporting disabled students. We should also be fostering a culture where students feel they can have open conversations around disability and reasonable adjustments, trusting that the outcomes of those conversations will be routinely actioned by the university.”

We believe that networks, led by researchers, and that respond to the real needs of researchers are the most important way to support self-management, peer-learning and healthy relationships with work and study. These networks must have resources though if they are to create change and build user-centred processes, including support staff time, and senior staff champions who will listen and amplify their voice.

About the Author

This image is a portrait photo
of Kay Guccione with
various framed artworks
in the background.
Dr Kay Guccione is a Researcher Developer, with specific interests in the role of mentoring and supervision relationships in enabling doctoral learning. She has recently published two funded pieces of research into Trust Building in the research environment, an empirical study looking at the Value of the Doctorate, and books on Enhancing Researcher Development, and on Thesis Writing. This year she was awarded a National Teaching Fellowship for leadership in doctoral and researcher education.

Monday, 22 October 2018

Pushing the Boundaries: Making the Exclusive Inclusive

Written by Amarpreet Kaur

Having completed my BA at a very modern and inclusive institution, moving to Cambridge was an eye-opening experience. I moved to Cambridge at a time when I was not worried if I would be able to walk the next day, when being wheelchair-dependent was not an imminent possibility. However, living with a degenerative condition and having passed through that very fog just before my arrival in Cambridge mean that accessibility and inclusivity are never far from my thoughts in this city.

For those with mobility considerations, whether chronic or temporary, environmental structures can make the world of difference. Such structures often go unappreciated and are taken for granted until they cease to function / exist. Before anticipating my move to Cambridge, I certainly never truly realised how fortunate I had been in my previous academic environment. In this post, I write to critically challenge whether physical access structures to academic institutions are actually practical and inclusive, and to increase discussion on boundaries that should be pushed so that the exclusivity of higher education (HE) can become more inclusive.

Figure 1. A Department Elevator. This
photograph shows a very narrow entrance
doorway to an elevator. The elevator
is next to a staircase with an ornate
carved wooden banister.
To illustrate my argument, I am going to start backwards, i.e. from the inside of institutional buildings. Figure 1 is of an elevator - possibly one of the most common environmental adjustments many universities have implemented in their respective buildings. The pictured elevator has purposefully been chosen as an example because of the practicalities that accompany its very presence. Whilst I do not know for certain the original purpose for the installation of this particular elevator, I am going to assume it was in response to policy / legislation surrounding accessibility1.

Figure 2. Inside a Department Elevator.
This photograph shows the inside of the
elevator depicted in Figure 1. The interior
of the elevator is very small.
The featured elevator, however, is impractical. An adult wheelchair would struggle to fit inside (see Figure 2), and self-propelled wheelchairs would definitely not fit. Yet, fitting inside the elevator is a secondary issue - first and foremost, individuals with mobility considerations would have to find a way to actually reach the elevator. To reach the featured elevators for example, an individual would have to navigate the steps in Figure 3; there is no alternate entrance and a ramp cannot be fixed to the steps due to the steepness and available space in front of them.

Figure 3. Stairs to Departmental
Building. This photograph shows
3 steep stone steps heading
up to wooden double doors.
Whilst I recognise that most institutions have more practical elevators, many have less accessible entrances. At a growing number of institutions, revolving doors, as illustrated in Figure 4, are being installed for energy efficiency measures, to prevent draughts. Such doors are not inclusive of individuals with mobility considerations. Having to find and use an alternate entrance is isolating and could even be exclusionary if one does not exist.

As Hannah Gibson so aptly wrote, access to spaces sends a message that ‘certain bodies are more welcome than others … [and] that they are inferior to [more] able-bodied individuals’. With well-known governmental initiatives such as Widening Participation (WP)2, access boundaries should not need to be pushed to make HE more inclusive. In contemporary society, inclusive access should be the norm.

Figure 4. A University's revolving
doors. This photograph shows a
revolving door split into 4 narrow
sections at the entrance
to a building.
I have never self-identified as ‘dis’abled, mostly because I have never previously been made to feel so. However, having moved to Cambridge, I now recognise that modern structures such as accessible elevators, automatic/light doors, and relatively flat pathways, are luxuries. Needless to say, considering basic access is yet to be conquered, accessible teaching/meeting rooms and mobility-friendly accommodation are even more rare.

I cannot escape the feeling that had I needed to rely more robustly on others, or been unable to come and go as I pleased without an entourage or timed assistance, I may have identified and felt differently. In this context, I am fortunate that my first experiences of HE were not made to be exclusive, and as a result I was enabled to reach my full potential. Now, in the words of Prof. Sara Ahmed (2006: 62), I am forced to acknowledge that ‘[w]hen bodies take up spaces they are not intended to inhabit, something other than the reproduction of the facts of the matter happens’; entrances inadvertently promote segregation, inaccessible elevators deny individuals with mobility considerations access, and thus boundaries are reinstated.

References:

Ahmed S, (2006). Queer Phenomenology: Orientations, Objects, Others. Duke University Press. USA.

Armstrong C, (2008). What you need to know about widening participation. [online] Available from: http://www.jobs.ac.uk/careers-advice/working-in-higher-education/1146/what-you-need-to-know-about-widening-participation Accessed: 27th August 2018.

Footnotes:

1. see the Equality Act 2010.

2. The aim of WP is to enable and encourage access to HE by offering opportunities to under-represented groups within the general population. Under-represented groups traditionally include which includes people with disabilities (Armstrong, 2008).

About the Author

Portrait photograph of Amarpreet
smiling into the camera with a
cityscape sunset in the background.
Amarpreet Kaur (@lioness1992) is a PhD Student at the University of Cambridge in the Department of Sociology. Amarpreet's research focuses on human germline genome editing in relation to disease and disability.

Saturday, 20 October 2018

Working from Home: Issues and Advice

Written by Calum Carson

Recent developments in communications technology and a greater recognition of the importance of a healthy work-life balance has led to a wider number of workers across the world voluntarily working from home. For those experiencing chronic illness and/or disability, however, such working arrangements are an unavoidable reality rather than a choice. For individuals in this position studying and working within a profession such as academia, where long periods of independent research and a lack of day to day working routine are already commonplace, there are a number of issues that can emerge through such experiences that it is important to discuss.

From my own perspective, the involuntarily imposition of home working arrangements is something that I have spent the past eighteen months coming to terms with, following the beginning of an on-going chronic back injury at the beginning of January 2017 (worst New Year’s gift EVER). This coincided with the beginning of the second year of my PhD following a six-month suspension for a research internship. I had spent the first year of my studies working 9-5 in the communal office space provided for doctoral researchers in my department, a routine I found easy to stick to after spending six years working 9-5 before returning to research for my Masters/PhD. My own particular injury essentially turned my back into what I liken to a cross between Goldilocks and an extremely moody teenager, with seating/standing/walking conditions etc. having to be “just right” in order for it not to tie itself into painful knots. This makes working from the rigid confines of a desk in an office extremely difficult, and has made developing a new working routine from home essential.

In a number of ways, the two key issues inherent in working from home are the same as those within any professional working environment: making sure routines and systems are in place so that you can work well and maintaining functioning professional relationships with colleagues to facilitate those routines and systems. The key difference for most home workers, however, is that the relationship aspect of work shifts from being comfortable with others to being comfortable with working alone and with yourself. This can be more difficult when home working has been imposed by an individual’s circumstances through a chronic illness or disability, rather than a specific choice deliberately made to better support family life and/or a work-life balance.

Given this, it is no surprise that a number of issues can manifest for someone finding themselves in this position. Feelings of loneliness and frustration about one’s circumstances are perhaps the most obvious, with the necessity of working from home making some depressed and anxious about missing out on working with academic colleagues. For some like myself it can also have a detrimental impact on work itself, with more distractions at hand and the lack of motivation produced by the lack of anyone around you doing the same thing.

Fortunately, there are a number of ways that working from home can be made more palatable in the twenty-first century. The same technological advances that have led to an increase in home working can be similarly utilised to provide home workers with more social and colleague-to-colleague interaction, for example through Skype “Shut up and Write” sessions and virtual coffee breaks. For those who can work for short periods outside of the home, meeting up with colleagues at a nearby cafĂ© or pub to work together for a couple of hours can be a welcome break from the confines of your typical routine, and the few-office-hours nature of academia can mean that arranging for others to work with you from your home are easier to arrange than they would be in many other sectors.

Setting clear boundaries between “work life” and “home life” are even more essential when your place of work is also your home, too: for example, by designating official start and end times to the working day, giving yourself a decent break for lunch (preferably outside of the house), and if possible ensuring that you get out in the fresh air at regular intervals (even if it’s just on the front door step). If you’re lucky enough to have a home office, use this more than any other room so that you can mentally leave your work in that room once the day is over.

While these may seem like very small and obvious pieces of advice, I can speak from personal experience that they really do help: working from home when you have no choice but to do so can be rough going at times, but there are a large number of things you can do to make things easier (and to avoid becoming a hermit): if you’ve got any advice of your own for us home workers, do please post it below!

About the Author

Calum Carson is a third year PhD candidate at Leeds University Business School, whose research explores the business case for the Living Wage amidst the continued growth of precarious work in the UK today.

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: nicole.brown@ucl.ac.uk Web site: www.nicole-brown.co.uk 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 http://disabilitystories.com.

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.

Sunday, 7 January 2018

Access denied: the dark side of prestige

Written by Hannah Gibson

‘In order for others to [be accommodated], who as beings have a different set of requirements, they would have to push for a modification of the environment. Some have to push to be accommodated. Given how able-bodied privilege comes to structure a world (both a physical and social world) then people will disabilities have to push to have their own requirements met.’ (Sara Ahmed)

Spaces. Each one requires a different physical and intellectual attentiveness. Perhaps you have never thought about how much energy it will take to get from one space to another, how your body responds when faced with slight inclines or uneven paths. The lighting of a space, whether there is a clear trajectory from the doorway to a seat. The space itself, how it seems inoffensive yet from the outside looking in, certain spaces are porous, where the walls, floor, ceiling have come to assume a certain type of body will fill that space.

Some weeks ago, there was a public engagement session that I wanted to attend in the Department of Sociology at The University of Cambridge. Around the same week, I was looking forward to a lecture on intersectionality by Sara Ahmed. Both events were scheduled to take place in the same seminar room, but I could not go because on those days, it was too difficult to walk up or down stairs. I live with complex and rare multi-system invisible illnesses, and the challenges I face, particularly within society and academia are what disable me (thus, I identify myself as a disabled person). Living with invisible conditions means that I look physically capable and ‘healthy.’ In this blog post, I want to create (or contribute to) a dialogue about the salient and ignored issues related to being disabled (both visibly and invisibly) within an academic institution, access (or lack of) to spaces, and what messages this reproduces.

I feel honoured to be a Visiting Scholar at Reprosoc* in the Sociology Department at The University of Cambridge. My family are proud. It is a privilege. Speaking out in any way that isn’t positive about a prestigious institution feels wrong – I should be thankful, right? A girl who didn’t attend high school and fought her way through her undergraduate and graduate school now sits at a desk at one of the world’s most renowned universities, and I am raising questions that may make people uncomfortable. But, as Sara Ahmed would say, you have to push against the tide and push against others walking in the opposite direction to be accommodated. As for the notion of privilege and prestige, they work to silence me, trying to erase my discomfort before I begin to give shape to the words and dare to speak them. However my positionality as a temporary visitor is perhaps what gives me the confidence to be honest. My goal is simple: to raise awareness so that long-term, disabled students, staff, and other visiting scholars have access to access any room or area that able-bodied people have.

Although there are archaic and small elevators (note the word ‘small’ as you read on) in some buildings, there are a number of areas that have none. The first time I was presented with stairs to the aforementioned seminar room, I walked up them. The next few times I couldn’t due to pain and fatigue. I do a lot physically with my limitations already, so forcing my body to ascend stairs and endure pain as I sit through a lecture or seminar is not productive. I have found that having incredibly supportive colleagues and mentors is not enough. They cannot erase the stairs that must be climbed or make the paved streets straighter. It is illogical that given how inaccessible rooms and buildings are in a country that has so many laws about being inclusive (see The Equality Act 2010).

At an individual level, not being able to participate fully in the both the academic and social aspects at an institution is isolating and pushes me, as a disabled person, further into the periphery of university life. This is not an unfamiliar feeling: to sit and give people my attention when the pain sears through my body, being too exhausted but wanting to attend something important, swallowing medicine to get through the day. The difference between this ‘normal’ and my current locale is that the physical barriers become much less about my in/abilities and more about the spaces that I am barred from, where the hurdles are concrete steps, uneven pavements and the way this has been allowed to continue into 2017. It is in the spaces found outside of the rooms beyond my physical reach that I stand (often alone) and feel defeated. It is infuriating but also incredibly sad. Why does an institution that has so much to offer is so exclusionary?

Without extra challenges, as a sick graduate student, it’s a David and Goliath battle, a weak body pitted against a myriad of challenges that form one giant monster. Pain, fatigue, deadlines, nausea, weak immune system, dysfunctional autonomic system, rest to fit in around all of this, and not forgetting to eat. It’s a constant roundabout of things to do, to cope with, and to juggle. Add on the normal pressures of completing a PhD (and particularly in anthropology where your body is your main tool as you undertake intense fieldwork – data collection – to understand the lives of your participants), I have a challenging schedule. Having environmental barriers further debilitates and narrows one’s options to participate in the very world in which one continually fights to carve out a space for oneself. Sadly, to be at Cambridge has meant more about adapting to an able-bodied world and less about engaging with my research.

Aptly put by this blogger, ‘when having to constantly seek out whether there is building access [to events], you’re having to foreground yourself as someone disabled before you get to present yourself as someone who is a badass researcher. Psychologically, achieving the inverse of this is hard enough with a temperamental body. Additional reasons to reinforce this lexical ordering of identity just aren’t welcome, especially when they’re avoidable if the access information was just made public.’  Indeed, this is a problem for many disabled people. We are in 2017, a time where one would hope accessibility issues would be minor. I could spend my time here unseen. If buildings were more accessible, I would not have to voice the concerns here. However, I know that if I were here full-time I would be reluctant to step forward. This makes it more of an imperative that I advocate and highlight the need for the university to be more inclusive.

The life of an academic (graduate, post-doc, research associate, lecturer) demands nothing but commitment and hours of input in order to survive within the academic setting. If healthy individuals feel the pressure, how are disabled people to speak of our struggles without inviting a spotlight that questions whether we deserve a place at the table to begin with? And why are people generally uneasy when the topic of disability is brought up? One thought: the systemic inequalities and oppression disabled people experience within institutions highlights how uncomfortable able-bodied people are with the concept of (any kind of) vulnerability. Disability studies have shown that one of the reasons able bodied people struggle to engage in dialogue about this topic is because anyone could become disabled and require help. Further, talk of limitations muddies the image of climbing the academic ladder or striving to be the best you. Thus invisible (and literal in the sense of lack of access) boundaries are created between the ‘able’ and the ‘dis-abled,’ and we become (alongside other oppressed minority groups) the Other (Ahmed, 2017 also writes to this).

At a wider level, a disabled person cannot study sociology at The University of Cambridge. There are specific spaces that it is not possible for disabled students to access. I’m here to ask, what message does this reproduce? In the first instance, certain bodies are more welcome than others. Yes there is a disability resource centre at the University, which I have no doubt provides help to those needing it, but I have to ask: where are all the disabled people? According to a study done in 2015, 1 in 10 students in tertiary education identify as disabled. Why am I seeing and feeling a disregard for those who inhabit this world differently to how able bodied persons might? Discarded before they are even acknowledged, the very smallness of the space that we are being given (if that) feels like a cursory attempt at inclusivity that fails. And the lack of access that I seek to this space but often cannot inhabit tells me something. To block, to restrict access, to continue to oppress, to ignore, speaks of what value is given to disabled people. And in turn it is reproducing the message that they are inferior to able-bodied individuals. To be a disabled person, it is always in proximity to the ‘abled’. Indeed, a disabled body creates the illusion that the able-bodied is the superior one.

Back to spaces. When I’m well enough, I walk around some of the streets close to my office. It is an incredibly beautiful town. Yet on bad health days, I have not felt like I belong. However, encouraged by my colleagues I have found space (for example in my office) that is inclusive, welcoming and non-judgemental. However beyond this, rooms can turn into spaces to fear, and ultimately avoid. Each space resides in beautiful buildings, but I have become smaller and voiceless. Until now. A colleague said something that struck a chord with me recently: don’t think you aren’t worthy of being here. Push the boundaries. Push to make them more flexible. And she is right. Waiting for others to realise anything can be futile. The best way I know how to push against the tide is through writing, experimenting and challenging inexcusable discrimination with the my own truth in order to challenge the norm so that those placed outside of it are not ignored.

*To note, this is not about my colleagues at Reprosoc, or anyone else that I have the pleasure to know in the Sociology Department. They make life a bit easier.

About the Author

Hannah is a PhD Candidate at Victoria University of Wellington and a Visiting Scholar at The University of Cambridge, UK.