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.
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.
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 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 in front of 
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