Academia Won’t Change By Itself

Written by Manya Singh 

My first year of college was my first experience with using disability accommodations.

I didn't tell anyone I used these accommodations.

Luckily, the classes I shared with friends tended to be big lecture classes, and if anyone mentioned not seeing me in the lecture room, I'd make an excuse about wearing black, or sitting in the back... and then I'd change the subject. I was so embarrassed.

My university had a policy that you had to submit accommodation letters to faculty in person, and my anxiety would bubble just under the surface as I arrived at office hours, quickly shoved the letter towards the professor, and attempted a smile before leaving without making eye contact. I knew that these professors got these letters each year, and they had already received the electronic version of mine from the coordinator, and still, the experience of having to identify myself in that moment was awful.

And then, out of nowhere, I started falling asleep.

I can remember the first time very clearly. I was in an advanced math class, as I'd qualified to skip regular algebra, and I was the youngest in that class. The teacher was great, and a legend among the students. I had always done well, especially in math, but I really wanted to impress this teacher with my attentiveness and work ethic.

But one day, I woke up to someone shaking my shoulder, and as I jerked back into reality, I caught the disapproving glance my teacher sent my way. My peers around me tried to hide their chuckles, and the student behind me told me my teacher asked her to shake me awake. I was humiliated and shocked, and I'm sure I left without giving the teacher an explanation... because I didn't have one.

For the next seven years, I would try a million things: increasing/decreasing sleep, giving up coffee, different protein powders, yoga, CrossFit, various vitamin regimes, and lots and lots of medical testing. I probably got tested for anemia, thyroid problems and diabetes every three to five months. Nothing ever worked and testing was always negative. I fell asleep almost every day, in almost every class. I was so embarrassed, especially in college. I knew that professors were thinking that I had stayed up too late partying or cramming or watching TV, when really, I had been in bed by 10:30. I sat in the back of the classroom and rarely participated, because I felt terrible.

I felt like I was inhabiting the body of someone else, a body that would not cooperate with me.

At 19, I was tested for sleep apnea, and I started treatment for that. It had been ruled out initially because I tested negative as a kid. The sleep apnea treatment helped a little, but I still fell asleep in classes. For two years, I waited for my "sleep debt" to end, but it never did. There were some other big changes in my life around this time, including having committed to coming to graduate school. I was tired of being tired, of feeling like less than a whole person, always embarrassed and anxious and hating myself. I started treatment for more severe, clinical sleep disorders.

And it worked. It's not perfect, and the effectiveness of my treatment depends on me committing to my routine, and to maintaining my health more rigorously than the average able-bodied person. My body isn't like most people's bodies, and that's frustrating, but I'm grateful that I've found effective treatment, and I'm okay with this being my reality for the rest of my life.

(It takes an average of seven years to diagnose sleep disorders, since the symptoms overlap, and tend to be ignored or dismissed. sleepfoundation.org is a good place to start if this resonates.)

The experience of my disability contributed to me feeling embarrassed and ashamed of it, but the reality is that there are many disabled people and students, with all kinds of disabilities, who feel the same way. For large segments of society, disability is bad, and we are meant to be embarrassed for being bad. Disability is not bad, but this notion being false, does not lessen the impact.

In academia, this is best represented by the statement: "Well, nobody needed accommodations when I went to school." Impostor syndrome impacts everyone, but it is different for disabled students because it interacts with, and is intensified by, the history and continuation of ableism in academia.

In college, I was co-president of the disability club on campus, and I helped a lot of students navigate accommodations. I would often get a message like, "[Insert example of not complying with official accommodation letters here], is that legal?"

I feel disgusted that there is a need to talk to students about how to negotiate accommodations, as if they are being held hostage, when they've already jumped through administrative hoops to get official accommodations. Each time I've had to do that in my own life, I have felt smaller, and I hate watching others feel that way too.

You feel like you don't belong,

like academia would be happy if you just gave up and left,

like "accommodations didn't exist back in my day" because disabled people have never

and will never be welcome in academia.

An administrator once told me that academia would improve in the next ten to fifteen years, as the people within it filtered in and out. I remember thinking: Is all we can do wait? Did we say the same thing ten years ago?

Have we always been waiting for academia to change on its own, rather than actively trying to change it?

When do we accept that hasn’t worked?

About the Author

Portrait picture of
Manya facing the camera
and smiling.

Manya Singh is a doctoral student in botany studying how drought impacts plant-soil feedback in invasive grasses. She has been active in student advocacy, with a focus on disabled students, since 2017. Follow her at manyasingheco.wordpress.com.

Why I can’t write a good personal essay

Written by Sarcozona

We have kindly been given permission to reproduce this from Tenure, She Wrote where you can find the original post.

I haven’t gotten a paycheck since my fellowship ran out in 2017. Funding is scarce for students in the end of their PhDs and scarcer still for international students with disabilities, so it’s not too surprising that I’ve been turned down for everything I’ve applied for.

Almost 5 years ago, I wrote with regard to applications for funding and otherwise:

"Use your story and the survival skills you’ve gained to succeed. I use my escape from rural poverty in personal statements to show that I have incredible drive, creativity, and independence."

But I just can’t do it anymore. I can’t make my life a funny, moving, educational story for someone else to judge.

I used to follow my own advice. I turned the ways in which I don’t fit neatly into the world into pat inspiration porn. I talked about disability, adverse childhood experiences, being queer in a culture of religious fundamentalism, childhood poverty, and sexism as obstacles for me to overcome in a story to inspire funders. And I received fellowships that helped me make it through several years of my PhD, a year and a half of unpaid medical leave and many uncovered medical expenses.

But now I’m too tired, too sad, too angry to twist my life into those kinds of narratives. Those things are structural problems reflecting deep prejudices, oppression, & exploitation. I can’t wrap up the things that hurt me the most in a cute package to make someone feel good about giving me money. Funders seem to want a story where cleverness and elbow grease make light work of disability and other “obstacles.” Ultimately, telling those stories was personally destructive because I kind of came to believe those stories over time. And they aren’t true.

A little smarts and hard work and luck can’t make my chronically ill body “productive.” Even if they did, it would only make it alright for me – and that’s not good or fair. Telling those stories for so long made dealing with the reality of living-with-chronic-illness-under-capitalism/being disabled and past traumas really difficult.

As soon as I decided the problem wasn’t me, but the response of people and systems to me, I stopped getting funding. As Dr. Sara Ahmed says, “when you expose a problem, you pose a problem.”

Chronic migraine isn’t an obstacle for me to overcome. It is an illness that I live with. It hurts, it’s unpredictable, and the symptoms are strange and varied. But most of my difficulties would not exist in a less ableist, racist, sexist, and capitalist society – the poor care, the financial anxiety, the relationship power dynamics.

• Migraine would have proper research and maybe even treatment – it wouldn’t be ignored, dismissed, and underfunded in large part because it predominantly affects women (and especially poor women).
• My disease wouldn’t be stigmatized and belittled in popular culture, despite severe migraine being categorized by the WHO in its most severe disability class along with such diseases and conditions as active psychosis, severe depression, quadriplegia, and terminal stage cancer.
• My disease would be less common – I might not even have developed it – if we had the political will to eliminate poverty and abuse and other such negative “social determinants of health”.
• Properly funded health care would ensure I received proper disease and pain management, saving me time, money, and suffering. I wouldn’t waste hours every week on insurance paperwork and scheduling with doctors, commuting and waiting at appointments, coordinating my medical care and researching treatments. I would have access to specialists for my disease. My medications would be covered along with physiotherapy and massage. I’d have funded access to therapy to deal with pain that cannot be treated.
• My PhD wouldn’t have such a short time limit on medical leaves. I wouldn’t lose my income when I am too sick to work. The number of hours I’m able to work wouldn’t determine whether or not I’m allowed to participate in science and research.
• My ability to financially support myself wouldn’t be tied to the number of hours I’m able to work or widgets I’m able to produce.
My immigration status wouldn’t be dependent on my relationship status.
• I wouldn’t be financially dependent on my partner because I could receive disability benefits while in a relationship with someone who had income. Or I would just get paid for working on my PhD.
• Disability support would be enough to live on instead of less than the median rent and I’d be eligible for it regardless of my work history and immigration status.
• I wouldn’t have to rely on friends and family when I’m too sick to care for myself, making it impossible or difficult for me to move or travel – I’d receive funding to employ people (or there would be government aid workers) to help me cook and clean and go about my daily activities.

When I stopped writing narratives that recapitulated ideas about “hard work” and gumption and began talking about structural challenges, about integrating dismantling those structures into my work (or at least getting support to deal with them), I stopped getting funding.

And it didn’t just hurt my funding – my relationship with colleagues has suffered as my attitude has shifted. They like to say things like “you’re so brave” or “it’s so great you always have such a positive attitude” – but when it gets inconvenient or slows me down, if I ask for help advocating for accommodations, or get frustrated with the endless structural barriers my university throws up, they disappear or make excuses or defend those barriers. If I let my good-disabled-person facade drop and express anything but unrelenting cheerfulness, they start pushing me towards the door. It’s not everyone of course, but it’s enough, and it’s people with power, so it matters.

Being “successful” in academia when I’ve faced discrimination and structural barriers has meant parroting oppressive beliefs and mythologies, and I can’t do it anymore.

About the Author

Sarcozona is a graduate student doing research somewhere between ecology and evolution. Their blog chronicles their experiences being sick and queer in academia with lots of asides about the plants, shoes, and books they love. you might also want to follow them on twitter or read their posts on Tenure, She Wrote.

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.

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"
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.


2. Rescheduling


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.


3. Secluding oneself


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.


4. Being assertive about needs


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.


5. Leaving


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

‘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 disabilitystories.com.

Coping strategies for disabled academics: self-acceptance and collective solidarity

Written by Marion 

Being a disabled academic is not easy. We frequently require considerably more time and effort to achieve the same as other academics and find some things which seem to be trivial for non-disabled colleagues almost impossible. We may need to achieve a lot more than others for the same recognition. We also frequently come up against a lack of understanding or even hostility when we ask for adjustments to overcome the barriers we face. It is very easy to become dispirited and to think all the difficulties are your fault and feel inadequate and incapable.

The first strategy is to recognise that you are not to blame and that academia is not particularly friendly and sometimes outright rejecting of disabled people. The social model of disability, though by no means perfect, is useful here. It puts the problem and responsibility firmly on society with its infrastructural, social and attitudinal barriers and not the individual and their impairments. It is the lack of large print books, ramps and lifts not the fact you are partially sighted or use a wheelchair that are the problem.

The second strategy is achieving change both for yourself as an individual and more widely for other disabled academics through collective action with other disabled and non-disabled people. There is strength in numbers and working with others reduces the risk of victimisation. This should include joining a trade union. UCU (the University and College Union) in the UK, which also admits (postgraduate) students. Other useful organisations (in the UK) include Disabled People Against the Cuts which is campaigning, for instance, to remove the various hurdles to disabled people getting the benefits they should be entitled to.

In most countries there is legislation about adjustments for disabled people. In the UK there is relatively strong legislation, but no sanctions for not implementing it. While the right to adjustments in the UK is limited by considerations of their ‘reasonableness’, in practice most universities and research institutes are large enough and have enough resources for this not to be an issue. It is useful to encourage your trade union branch to negotiate a policy on reasonable adjustments with your employer. This should include reasonable time limits so that adjustments are put in place quickly and central responsibility for payment to prevent individual departments or schools objecting on the grounds of cost. It should also include disability leave, for instance for medical and other appointments related to your disability, getting a guide dog, learning to use new technology or time off due to changes in your condition. For many disabled academics excessive workloads are a particular barrier and working the nominal 35-38 hour week rather than the 50-90 hour week frequently expected could make a real difference.

If you require reasonable adjustments, you should involve your trade union in negotiating them, and therefore need to be a member. Despite their legal obligations, academic employers are not always helpful and trade union support can help to change this. It is also useful to know about financial support. In the UK Access to Work has been called the best kept secret. It covers, for instance, support workers, additional equipment, adaptations to equipment, fares to work if you cannot use public transport and disability awareness training for colleagues, though the employer might be required to pay a contribution.

The third strategy is talking and exchanging experiences with other disabled academics by electronic media as well as face to face. This can be very helpful in finding out what adjustments, if any, they have and which ones they have found useful, as well as any good practice in their institutions and campaigning strategies that have and have not worked. This can help you determine what additional adjustments might be useful to you, as well as what to campaign for in your institution and how to go about it. Drawing attention to any good practice at competing institutions can often be useful. Talking to other disabled academics can be very important in breaking down isolation and feelings of inadequacy and blame and helping you realise that any problems you are experiencing have structural not personal causes. Talking in confidence to people who understand what you are going through can help you survive when things go wrong.

A fourth coping strategy is recognising your strengths. We all have them, as well of course as weaknesses. The creativity and adaptations we have developed to overcome the barriers we face are in themselves strengths and some of us may have particularly creative ways of thinking and working and/or find easy things which most non-disabled people struggle with. However, when things become difficult it is easy to forget your strengths and creativity and all the positive qualities that enabled you to overcome all the barriers, hoops and hurdles to be accepted into academia. It is easy to fall into a deep hole and feel totally inadequate. It can even be useful to write down your strengths and your achievements at a time when things are going reasonably well, so that you can refer to them in the more difficult times.

The final strategy is keeping a sense of humour, being nice to yourself and not expecting the impossible, or at least not all the time. It is frustrating to have to accept that there are things you need help with or struggle with, particularly when non-disabled people seem to sail through. At these times it is useful to consider your strengths and the times you have helped other people, as well as recognising that the difficulties are due to barriers to disabled people not your inadequacy. Keeping your ability to laugh at things, including difficulties and the pomposity or obnoxiousness of colleagues can be helpful. And the last laugh will be on us, by staying in there and being successful academics despite all the difficulties.

Reasonable adjustments, Access to Work and disabled staff

Written by Wendy Merchant and Stephen D’Evelyn 

We are two disabled members of staff at a UK university, both involved in an ESRC funded research project called ‘Getting Things Changed’. In our research we are trying to understand the way in which social practices can disable people, and how we can build on that understanding to question and to change practices which get stuck. Our particular strand of this work focuses on the academy itself, since we know that universities are rife with problems for disabled staff and students, and we are of course implicated in those practices. In this blog post, we pose the question: is ‘Access to Work’ the solution for disabled employees? ‘Access to Work’ is the name of a UK government funded scheme which claims to support disabled people to stay in work by “providing practical and financial support” (pg 1, 2017). In theory, costs for such support are divided between the employer and the Department for Work and Pensions (DWP).

In the context of our research within universities, we have found that Access to Work is certainly not a bed of roses. The experience of disabled staff within the University navigating the scheme in order to obtain materials, resources and adaptations to buildings, is collectively identified as problematic by disabled staff at the University where we work. Neither is its availability nor the range of resources or support that it covers widely publicised to disabled staff. For instance, one of us is a woman, with various long-term conditions, working as a Research Associate on an ESRC funded project (‘Getting Things Changed’) and was unaware that Access to Work could fund a job coach to help her at work or could fund counselling for staff with mental health conditions (DWP 2017).

Disabled university staff we interviewed as part of our research described how they were left to navigate the lengthy and complex process alone, with little or no support from their employer. Instead, individual staff used the Staff Disability Forum (SDF) which disabled staff had instituted within our university as a group for peer support and collective action for positive change. This enabled them to share their difficulties and gain advice and support from each other. The SDF has become a hub where disabled staff share their experiences and give each other advice, in particular about the existence of and access to the “Access to Work” scheme. Several staff shared that they did not know what the scheme covered until another disabled staff member told them:

“…I actually got more advice and help from members of the Disabled Staff Forum. Because I didn't even know what I could apply for from some of those things, or what was relevant. What's the employer's obligation? Like, I didn't even know that. You know, what is the employer's obligation? What can I ask for from Access to Work? And so I did draw on the experience of people, other people, in order to sort of decipher that...”

As Sang (2017) suggests, such forums can, and do, act to facilitate the full integration of disabled staff into the structure of their organisation. However, by leaving disabled staff members to organise themselves and support each other to navigate through these systems themselves, there is a danger that the institution reinforces the notion of the disabled staff member as a “problem.” Although peer support is vital and at the heart of good practice, it can also generate problems, since it can reinforce the experience of only finding support from other disabled people, rather than enacting equality among persons with any variety of physical, mental health, and learning profiles. Forcing disabled staff to rely heavily if not exclusively on their own user-led groups, due to the lack of integrated support across an organisation, also reproduces and reinforces the structure of ableism—value determined by achievement—which could be said to be inherently discriminatory and disadvantageous to disabled people. A more equitable approach would recognise that all employees require a differentiated approach to their employment.

The organisation of the University into Faculties, Schools and Centres and the division of its budget further complicates the process. For example, if a disabled staff member is employed on a research contract, whose budget covers the University’s contribution to resources or adaptations? Disabled staff members reported their reliance upon having a supportive, informed and responsive line manager to support them through the process. Once the “Access to Work” grant has been made it becomes the responsibility of the individual staff member to administer their claim. This may involve managing the timesheets of support workers, submitting monthly claims and dealing with lengthy queries from the DWP regarding these claims. One disabled staff member suggested that:

“…I spend about three days a week – three full-time days a week – arranging my own travel, booking it all, researching it, filing my university claims – because everything has to be claimed through the university first – and then the Access to Work claim. Each one is a three-stage process…”

Another reported that their application was still being processed after 2 years.

These experiences raise so many questions for universities who champion policies that seek to “widen participation” and “include” disabled students and staff alike. Similar to the experience in the U.S. described by Franke et al. (2012), in UK higher education there is a discrepancy in the provision of support for disabled staff at universities compared with disabled students. However, looking at the experience of both disabled staff and disabled students within the University there is a shared sense of having to navigate organisational systems alone.

What is clear is that the University is not designed for disabled staff or students to easily fit in. This is a wider issue that is reflective of the ableist ideals of the neo-liberal society in which universities operate. Solutions instead seem to lie in the direction of firstly helping decision-makers become more aware of the value of identifying and making the most of all staff members’ potential, and secondly educating staff about the basic principles of equality which actually make for a more flexible and creative workforce. Finally, our project suggests that the most important thing is to shift models of value away from simply medical diagnoses of difference to a social model (Oliver 2013). A medical model focuses on the individual member of staff as a potential problem to be fixed, a rather prevalent attitude we have found in the university. By contrast, a social model approach would turn attention instead onto the structural issues and exclusionary practices which have become embedded and ‘naturalised’ in universities, in such a way that we often do not even perceive them. It is only by uncovering and questioning these practices that organisations may begin to tackle the power imbalances between senior and junior staff. Higher Education Institutions ought, we suggest, to be at the forefront of helping turn this vision into reality, helping transform social structures through greater understanding. To do this we need to continue the work of research, practical policy development, and improvement of organisational processes by testing policy against lived experience and revising it. In addition, we must consistently make the case for the incalculable value of the full person in all his or her variety to a society and a world facing challenges like never before.

References:

Department for Work and Pensions (2017). Access to Work. Department for Work and Pensions. Available from: https://www.gov.uk/government/publications/access-to-work-factsheet/access-to-work-factsheet-for-customers. Accessed 24/8/2017.

Franke, A.H., Berube, M.F., O’Neil, R.M., Kurland, J.E. (2012). Accommodating Faculty members who have a Disability. Report from Sub-Committee of Academic Freedom and Tenure http://www.ok-ahead.org/facultywdis.pdf

Oliver, M. (2013). The social model of disability: thirty years on. Disability & Society, 28(7): 1024-26.

Sang, K. (2017). Disability and Academic careers. Herriot Watt University: Edinburgh

About the Author

Wendy is a Research Associate in the School for Policy Studies at Bristol University and also a disability activist. Stephen is a disability activist and a scholar of Latin language and literature and Medieval Studies.

Improving access on campus

Written by Katherine Deane 

I work at the University of East Anglia (UEA) in Norwich, UK. Based in the School of Health Sciences, I’m a Senior Lecturer in Research, working with people to improve their management of long-term conditions. I’m also a wheelchair user.

In the 1960s UEA’s campus was designed with the intent of creating a sense of community. Unfortunately, back in the ‘60s, people with disabilities were not considered to be a usual part of the university’s community. So our campus was built without implementing the principles of universal design and included inherent barriers to access.

I joined UEA in 2009. As my own disability progressed and I needed to use a wheelchair to get around, I hit many of these barriers. Some were physical – heavy doors, which put me at risk of dislocating my shoulder again; some were attitudinal, such as requiring my department to spend an entire year’s budget excess to power-up key doors (that made me real popular). When I started to try and advise my university on the design of new buildings, I was met with condescension, incomprehension, and conflicting priorities. I was usually ignored and told it wasn’t that important an issue. When I suggested some new heavy doors to seminar rooms should be powered-up, I was told this wasn’t a “green” option. It was a very frustrating time. Whilst I was getting some personal accommodations, I could see new building and refurbishments being constructed with yet more access barriers built in.

Then we got a new Vice-chancellor, Professor David Richardson. In his first days as VC he held an open meeting with staff. I sat at the front of the room in my wheelchair. I challenged him by saying that even new buildings on campus were not accessible, and that UEA wasn’t using its in-house expertise to make them so. He invited me to have coffee with him in one of these new buildings, where I demonstrated the problems I had getting around a brand new building that had had millions spent on it. He thought this was unacceptable, so he asked me to help set up the Access All Areas Team. I wrote the terms of reference for the group, a key priority being that anyone with a disability – staff or student – could attend meetings and inform the decisions of the group.

We took the existing jobs list which was created from the mandatory accessibility audit. The legislative standard for access in buildings (Schedule M) is minimal – if you have a step-free, powered front door and a disabled toilet, you’ve pretty much met the standard. While the existing audit met this standard, we added a lot of jobs that are extra to that standard. We have an annual central budget of £300,000, but we have over 100 buildings on campus, and a single powered door can cost £15,000 to buy and install. If we only addressed our highest priority items, this would cost over £1 million.

We reprioritised the job list. We prioritised safety and being able to get around the campus. So we encouraged the Fire Safety Team to buy evacuation chairs. In the event of a fire, someone with a mobility impairment can sit in an evacuation chair and be rolled safely down the stairs by a fire warden. This made many more teaching spaces accessible. We reprogrammed some of our newer lifts so they can now be used in the event of fire, making more of our rooms fully accessible for those who can’t get out of their wheelchair and into an evacuation chair. We have installed 162 powered doors in the last three years. These were prioritised as front doors, then corridor doors, then teaching space doors. Public areas were given top priority, followed by student areas and then staff areas. A quarter of a million pounds was spent on a new fire lift to ensure that the students’ union is fully accessible. We also have more fully accessible teaching rooms, accessible toilets, ramps, better signs, etc.

We have created guidelines for architects, explaining how we want all future buildings to be designed. These guidelines follow the principles of universal design, so our new buildings will work for our entire community. We are aiming to build the most accessible science laboratories in the UK, which will include a changing place – which is a disabled toilet with a bench and hoist to allow people to be changed with dignity. In fact, we have established a policy that all new buildings and major refurbishments will install a changing place.

We held our first Disabled Access Day in March of this year, celebrating our access improvements, and we are now moving on to address attitudinal barriers. We are working to improve the experience of students with disabilities by improving the knowledge and attitudes of the students’ union’s societies and sport clubs. They are receiving mental health first aid training from MHFA England and I’m teaching a course in disability confidence.

External bodies have noticed our expertise and we are starting to advise charities, councils, and service providers about improving accessibility and disability awareness. We are aiming not just for an accessible campus, but one that sits within an accessible community, welcoming to everyone.

We have changed university policy at the highest level. It is now part of the Corporate Plan that the campus is to be “accessible for all”. Today we have nearly 1500 students on our campus and 12% of them have disabilities – a 50% increase over the last 10 years. Diversity has long been identified as leading to greater commercial success. Disabled people improve our university’s diversity and so our potential for success. Having a disability means that people develop many skills such as problem solving, time and energy management, and communication skills. We think these skills are hugely valuable to our university community. We believe that if the barriers to participation are removed, then people with disabilities can demonstrate their brilliance. We want all our students to be brilliant. We know our job is not yet complete. We have come a long way, but we have further to go before we achieve our aim of a campus that is accessible to all.

If you would like a copy of our Access Guide, or would like me to speak to your institution about the value of improving accessibility, please email me on k.deane@uea.ac.uk.

About the Author

Photograph of Katherine,
who is Caucasian with short brown
hair, smiling in tinted blue glasses.

Dr Katherine Deane is a Senior Lecturer in Research at the University of East Anglia, Norwich. UK. She works with people with long term conditions to research the best way to manage them. She is also interested in disability and the built environment and is working to improve campus accessibility in particular. She has a number of long term conditions herself and is a wheelchair user – which gives her insight that just can’t be gotten any other way. She is a self-confessed geek and is raising a geek son alongside her geek husband.

Ten Ways to Make Conferences Accessible to People with Disabilities

Written by Debra Guckenheimer 

Debra kindly gave us permission to re-post this article from medium.com.  The original can be found here:

ten-ways-to-making-conferences-more-accessible-to-people-with-disabilities

Attending workshops, lectures, symposium, conferences, and other events are difficult or even impossible for some people with disabilities. Rarely have I seen disability given much thought in conference planning, even when the topic is diversity and inclusion.

Here are ten ways to making your conferences more inclusive of people with disabilities. Many of them cost little to nothing other than a little forethought.

1. Accommodation Point Person:

   Assign a person to be responsible for providing accommodations when needed. This person ideally should have some training in disability inclusion and encouraged to think creatively about how to accommodate potential attendees and speakers. Publish a phone number available during the event so that someone is available to address issues as they arise.

2. Advertising and Publicity:

   Include a statement about your desire to be inclusive of people with disabilities. Provide contact information for your accommodation point person as well as information about all accommodations you have arranged. All photographs in publicity should include a caption describing the picture for the blind and visually impaired who use screen readers.

3. Interpreters:

   Provide an option of a deaf interpreter. If you have the funds, hire the interpreter for all events or at least the larger sessions. Having the interpreter allows for attendees to not have to make the request in advance as well as demonstrates your commitment to inclusion. If funds are tight, offer to provide an interpreter upon request.

4. Ushers:

   For the blind and visually impaired as well as for people with difficulty carrying materials around with them, have someone available to escort people around large conference spaces. If your event requires walking across long distances, have wheelchairs available for escorts to transport participants who need help getting across the space.

5. Parking:

   Does your space provide adequate parking spots for people with disabilities? If lack of parking is an issue, consider providing extra reserved spots for those with disabilities. Consider how people with wheelchairs as well as those without but who have limited mobility can maneuver the space. If a separate entrance is needed for those who cannot climb stairs, make sure the entrance is not locked. Allow people to independently be able to enter your venue. If it isn’t self-explanatory, have clear instructions for where ramps and reserved parking for those with disabilities are located.

6. Location and Set-Up:

   Be sure your venue is wheelchair accessible — both entrance and bathrooms. When planning the set-up of your room, ensure that isles are wide enough for wheelchairs. Leave space at the side and back of rooms so that people who need to stand can do so.

7. Inclusion Supplies and Supports:

   Want to go above and beyond? Provide a separate space where attendees can comfortably relax, especially for longer events and conferences. Have more comfortable chairs and foot stools in these spaces. Ensure space for attendees to stretch there if needed. Inside your event, provide back supports, cushions, and/or portable foot stools so that attendees can make the seating fit their bodies.

8. Food Allergies and Intolerances:

   If you are serving food at your event, consider taking a few steps to allow participants to keep themselves safe. Keep common allergens out of your menu, and announce menus ahead of time including if the menu is free of these. Keep your event space peanut/tree nut free since those allergies often respond to any exposure. Label foods being served (or if using wait staff, have them informed) including if they contain and/or are free of common allergens. If you are aware of an attendee having an allergy, do what you can to accommodate. Providing an alternative food is more inclusive than asking an attendee to bring their own.

9. Audio/Video Streaming and Conferencing:

   Being physically present is just not possible for all people. If you take advantage of one of the many technologies available to audio/video streaming or conferencing. At the most basic, you can allow people to hear and see speakers. With more investment, you can allow speakers to present and participations to ask questions without being in attendance.

10. Social Media Participation:

    With social media, we can rethink what participation looks like. Create a hashtag for your event so that participants can use it to follow each other’s posts. Create a Storify page to track postings and create a permanent website with tweets and streaming. Provide a listing of all speakers and participants that include social media used to encourage participants to connect. Virtual Connecting is an organization is rethinking academic conference participation. They have ideas about how to connect people physically present as well as those participating online.
Don’t stop with my ten tips. The best way to be inclusive of people with disabilities is to engage in conversation. Ask people with disabilities that you want to participate at your conference what they need. Be open and creative. Making your conferences and other events more inclusive for people with disabilities will also make them more inclusive for all people.

About the Author

Photo of the author

Debra Guckenheimer is a Research Associate at the Clayman Institute for Gender Research at Stanford University. Previously, she was a Research Associate at the Hadassah Brandeis Institute at Brandeis University, a Visiting Assistant Professor at Bowdoin College, and a Postdoctoral Research Associate with the NSF ADVANCE Institutional Transformation Program at Northeastern University. She is an expert on social change efforts to reduce inequalities based on race, class, gender, sexuality, and disability. She has appeared in USA Today and on public radio. Her work has appeared in the Women’s Studies: An Interdisciplinary Journal, The Feminist Wire, The Handbook of Positive Organizational Scholarship, and Doing Diversity in Higher Education. She has a Ph.D. in Sociology from the University of California, Santa Barbara and a B.A. in Politics from Oberlin College.