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.

An Unreliable Mind: Being OCD in the Academy

Written by Clare Griffin 

I am writing the first draft of this on a flight home, feeling emotional after a crappy connection. Is it a good idea to start writing this now? Is it a good idea to write it at all? To publish it, where anyone could read it? What do I hope to achieve by this? How much will it hurt me to publish it? How much good could it possibly do? For me, or for anyone else? Do I mean everything I am saying? And will anyone believe it?

This, and a thousand other worries come to me on bad days, when the OCD I was diagnosed with a few years ago takes over. At some points in my life, all I had were bad days. Now, I have a lot of good days, and still some bad days, and the bad is manageably bad.

After much treatment, and much help, life is easier. Easier is not the same as easy. But some days, easier is everything.

My OCD rewrites the world for me. It pushes me into false certainties where only uncertainties lie. If a friend doesn’t reply to me, they must certainly hate me; yet I can only be uncertain as to the motivations of others. My mind can be unreliable, yet my work, my career, my life, rely on my mind and on my judgement. How can an unreliable mind be an academic mind? If I can’t always trust my judgement, how can anyone else?

My OCD gets me praise. If I have scrutinised every detail of a piece of work or of an event, my OCD will still have me check again, and again, and again, and again. I am early for deadlines, always there for meetings and the most reliable collaborator – until I’m not. Until the compulsion that drives me to check, and recheck, and check again, pushes my brain too far, and I have to lie in the dark to try to make it stop. How can I feel well in an Academy where other people look at pain and see productivity, see the shadow on the wall cast by a pathology and declare it a work ethic? How can I function here? How can I function anywhere?

And yet I know for certain - with actual certainty, not the false kind the OCD sends - that people with mental health and neurological problems are valuable, intelligent people. I know for certain that academics with these conditions make major contributions. I know for certain that those people who have been open about their conditions, and their problems, have helped me. Cartoonists, writers, presenters, literary studies scholars, and historians have all made important and beautiful works out of their pain. If I can unquestioningly accept the value of the intellectual work of other people - other creators and academics with problems like mine - can I accept the value of my own mind? Can I believe that other people will?

Why did I decide to write this? Is it to free myself from the prison of shame that keeping medical conditions private can create? Is it to find sympathy? To aggrandise myself or pity myself, or hurt myself? To martyr myself? Will I cause myself too much pain with the vain and self-important idea that I will help others by writing this? Will people react negatively to this? Or will they not even notice it? Have I disclosed enough to help people? Or have I exposed myself by sharing far too much? The reality I must live with is - I just don’t know.

About the Author

Clare Griffin is a historian of early modern science

Portrait photo of Clare who is 
dressed smartly and facing the camera 
in front of a plain background.

and assistant professor at Nazarbayev University, Republic of Kazakhstan. Her work focuses on global exchanges, practical knowledge, and translation, especially as this relates to the early modern Russian Empire.

Gratitude

Written by Ella Hollis 

Ella kindly gave us permission to share this post from her personal blog.

I think that going through any kind of hardship, no matter of what nature, can sometimes mask what you do have in life to be grateful for.

Ella, a young white woman with
long blonde hair, is dressed
formally in a black academic
gown. She is standing on a lawn
facing the camera and smiling.

It’s so easy for me, and only natural, to focus on what I’ve lost. Compared to only 4 or 5 years ago, I’ve had my world totally stripped of life as I knew it. My total life plan was scrapped, I have had to intermit from university, I no longer have any independence, I have to use a wheelchair and rely on carers to do the simplest of tasks I never imagined, at my age, not being able to do. My life went from having a successful academic career to spending extended periods of time in hospital, with my body failing me more and more. My daily routine was suddenly out of my control, and my life was dictated by my body.

This week in particular, I’ve been really struggling. I don’t really know why; as always, there has been a lot going on, but I just haven’t been able to see a way forwards. I can’t help but apologise for basically my existence and the smallest of tasks seems massively overwhelming. I just haven’t been able to get myself out of this frame of mind and I’ve spent so much time in tears.

Ella is in her home cuddled
up to her dog Jeffrey. They
both face the camera and Ella
is wearing a nasojejunal tube.

How did I get here? 23 years of age, I can’t even eat a meal, I’m fed through a tube in my nose, I have a stoma bag, I’m in a wheelchair, my health conditions have been taking over my life and I don’t know how much more I can take.

However, although I’ve found it even harder than usual to see clearly, I need to try to focus on what I do have and what I am truly grateful for. Please don’t think that this comes easily, because I can assure you it doesn’t, and whatever positive front I may seem to put on here isn’t how I feel most of the time.

Firstly, there’re things to be grateful for because of my illness. This sounds

Ella is pictured in a cafe with a
friend. Both young women are
in wheelchairs and smiling
directly at the camera.

crazy, I know, but without it I wouldn’t have met some of my closest friends who share some of the same conditions as me. I’ve lost most of my older friends because of being unwell, but the friends I’ve met through my blog or other forums understand me like no one else and the bond I have with them is something I’m so grateful for. There’re people whom I can talk about things I never imagined myself having to discuss at my age, but people who have an understanding of at least some aspects of what I’m going through.

As well as this, my illnesses have truly changed my perspective on life. It has shown me the most important things which, to me, is my family – I have the most supportive parents, sister and boyfriend, as well as Jeffrey who brings me more joy than anybody realises. Being unwell has also made me grateful for the smallest things I never realised I took for granted; getting fresh air after eight weeks in hospital, sleeping in my own bed and having a nights sleep without being sick.

Ella is looking down at her
dog Jeffrey who is sitting in
her lap. She is pictured outside
a building in her wheelchair.

When I really thought about it, I also have a lot more to be grateful for – good days where my pain and other symptoms are manageable and I’m able to get out the house and enjoy myself, even if it’s just taking Jeffrey to the woods. Getting a surprise, receiving a nice message or comment on a blog post or getting a letter from one of my pen pals; honestly the smallest things now just mean the world to me as I understand the importance of kindness more deeply.

As difficult as life is at the moment, and as much as I’m struggling both physically and mentally, all I can say is that the love and support from my family and friends, messages, visits, and any act of kindness, no matter how big or small, is appreciated more than I can put into words. No matter how challenging life gets, there is always something to be grateful for.

About the Author

Ella, who is 23, was studying Natural Sciences at Cambridge University but unfortunately had to intermit from uni for the last three years due to ill health. She suffers from EDS, PoTS, Gastroparesis and associated conditions as well as Crohn’s Disease. She writes a blog to connect with others in similar positions with the hope to support them, as well as document her journey.

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.

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 café 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.

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.

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.

You have MS

Written by Stephanie Zihms 

After 10 months of tingly arms & legs, a bout of optic neuritis, unexplained tiredness and brain fogs, as well as doubting my own sanity – I was finally diagnosed with MS (Multiple Sclerosis). Even though this was not entirely unexpected it was still a shock and at the same time a huge relief. My response turned out to be ‘full on research mode’. I searched the web high and low for information and anything related to MS – funnily enough my parents did the same – must be a family trait. Probably for a good month or so, I was in a haze of information, feelings, uncertainties, insecurities, strength – or to put it bluntly I was one big mess on the inside but very functional day-to-day.

After my family and some close friends, my supervisor was the next person I told, mostly because she was there when I had no clue what was going on and it just felt right to tell her. I also pretty quickly decided to tell HR because I wanted them to know in case things got worse unexpectedly. I recently came across this blog post from Heather on The Mighty. She also tweets as Dizzy the Donkey which is worth a follow. The first thing that struck me was that she decided not to tell people because of the fear of being judged – I had exactly the same fear of being judged or perceived as lazy, slacking or not working as hard, which was one of the reasons why I decided to be somewhat open at work about my MS diagnosis. I told close colleagues and office mates and others if it came up due to people noticing changes; most notably, I had to explain my new diet to my lunch club colleagues. This was followed by waves of "but if I admit that I have to change my working hours or ask for other adjustments, I would be considered not as good an academic". I have never really been a 24/7 academic and always valued my weekends and time off but this was never visible at work. Now, with adjusted hours, 1 day a week working from home and days where I looked like s*** it’s a bit more obvious that I’m not 100% fit all the time.

The first thing my supervisor told me was “now you have a reason to take care of yourself”, which is kind of sad because we all should take of ourselves in whatever form that happens. But for me this means I have to be more sensible about how I plan my work, how I set deadlines, what activities I agree to etc. To be fair, at the beginning that didn’t seem to be too big an issue. I agreed to work 1 day from home and adjust my hours as needed; on a good day work a bit more, on a bad day leave early. Outside of work, this meant changing my diet and exercise regime, as well as starting my day with a 10 minute stretch (which I actually manage most mornings).

It took a field trip in mid-February to realise that I have to treat a good day as a normal day and not work more. We went to a geological site that I was excited to show a visiting researcher from Brazil. I had been feeling great – diet and exercise seemed to be working so off we went. The day was very cold, windy and we ended up on site for 6 hours with only a break for lunch. That evening, I felt tired but not necessarily more than after similar days like this – however I couldn’t get any heat in my legs. In hindsight I now know this was a tell-tale sign that something was not right. I ended up off work for 2 days due to severe fatigue. Well done me! By Friday I started to feel better again and another week later I think I am fully back to “normal”. This was quite a big shock to my system and it really highlighted some other issues creeping up – particularly the realisation of "that’s it now – You have MS – life is not going to the same"! For a wee while it felt as if this meant Life is also going to be rubbish. This is, of course, not true but at that time it felt like it.

During these pretty shitty weeks of feeling super low, the counselling sessions really helped. These were offered to me from my employer after I told them about the diagnosis. It took me a while to go and I had to reach a low point where I didn't know what else to do to get me to go. I had my first session on 8th February, about 3 months after my diagnosis. I have now had 4 sessions. They have helped so much and I am glad that they were available to me from work because I had access quickly. HR set up the initial contact and told me to call them if and when I needed it – after calling them I had an appointment 3 days later. Since I did pick up the phone at a low point, this quick access was so important because the first 3 weeks in February were particularly difficult and if I had not had counselling, it could probably have been a lot worse. Unfortunately, I have to say that this, together with an occupational health assessment and reasonable adjustments, is all that my university offered – tick box requirements. There is a disability service but this is aimed at students, there is access to assistive technology – but this is not widely advertised – and again does not really help with the impact on mental health, feeling of belonging and emotional aspects of a recent diagnosis. Through contacts, I found out that there is a type of peer support group but this was not publicised in a way that I knew about it when I needed it. I also found out that we don’t have a working group for disabled or chronically ill staff or a representative on any working group related to staff. I don’t think this is ok and I want to make sure that members of staff that go through something similar in the future have these services available and are aware that they exist. This can only really happen through openness about my own diagnosis and a little bit of lobbying.

Through some existing connections at university I should be able to get some of these things rolling and I’m hoping to get more involved. A key factor in deciding to be open and get more involved has been the Chronically Academic network. This was one of the first forums or networks I joined and I felt very welcome and supported.

About the Author

Image of Stephanie on fieldwork
overlooking a rural landscape

Stephanie Zihms is currently working as a postdoc in Carbonate Geomechanics in the Institute of Petroleum Engineering at Heriot-Watt University. Her research tries to understand why rocks deform the way they do and what controls this deformation – crystal size, crystal shape, pore size or pore shape? Or is it the mineralogy or how the rocks formed in the first place? By deforming different rocks under different conditions in the lab she is trying to find some answers. This research and the findings are relevant for a range of subsurface processes like hydrocarbon extraction, geothermal energy production or Carbon Capture & Storage applications. Basically anytime a liquid or gas is put into the subsurface or extracted from the subsurface the conditions change and the rocks will response to this change – by understanding what controls this response within the rocks (grains , pores) we can predict the behaviour in the subsurface. Stephanie was diagnosed with MS in November 2016. To read more about her life as a Chronically Academic also check out her blog: stephaniezihms.wordpress.com.

Tips for Success in Academia When You are Different

Written by Temple Grandin

I learned a lot by reading my student evaluations of my teaching. There are two kinds of critical evaluations. They are: 1) Ones that provide constructive suggestions on how to improve my teaching and 2) Nasty comments. I learned that I had to disregard the nasty comments and learn from the constructive criticism. Early in my career a student who was in more than one of my classes commented that I always gave the same lecture. The mistake I had made was using the same introductory slide for two different lectures in the two classes. I immediately made the introductory slides different.

In any job, it is important to keep copies of all your annual evaluations. Building your portfolio is also important. In academia published scientific papers are a major part of your work but there is often other work that is not formally published. If you have built a really innovative piece of equipment, make sure you photograph it. Other work you should keep copies of are: grant proposals, computer code, scientific data, statistics programs, artwork and drawings. Since I was weird, I had to sell my work and not myself. In my consulting work, I sold my services as a livestock equipment designer by showing photos of completed projects and drawings.

I recommend keeping paper copies of your most important work that has not been published in either the formal academic literature or in a book. Electronic formats keep changing and ten years from now, it maybe difficult or impossible to retrieve the material. Print out photos and drawings on high quality paper and protect them from light. Keep a hard copy of your best work at BOTH your office and at home. We had a flood on our campus and both students and faculty had research work destroyed. The materials you save can be used to make a portfolio if you ever need to get a new job. The portfolio can also be used to show your work if you get into a conflict with your boss or colleagues.

Getting Along with Colleagues

When I worked on a team project, I learned that it is best for me to have a well-defined piece of project that is my responsibility. The scope of my area of responsibility should be defined at the beginning of the project. For example, I will write this specific section of the paper and get it done by a certain date. My colleagues on a jointly written report sometimes made mistakes. I learned never rub their noses in them by calling them stupid. I worked on one project where I quietly corrected the mistakes that others had made. Our jointly authored scientific paper was successful. One must remember that the goal is to produce a good publication.

To get a long with colleagues, you have to make a decision about where your life is going to lead. Is political advocacy your main goal in life or is it professional success? Being successful at both is almost impossible. You have to make a decision on what is most important to you. In conclusion, you must always do your job with integrity.

Publications that May be Helpful

Grandin, T. (2006) Thinking in Pictures, Expanded Edition, Vintage Press, Random House, New York.

Grandin, T. and Panek, R. (2013) The Autistic Brain, Houghton Mifflin Harcourt, New York, New York.

Grandin, T. and Barron, S. (2005) The Unwritten Rules of Social Relationships, Future Horizons, Arlington, TX.

About the Author

Mary Temple Grandin is an American professor of animal science at Colorado State University, world-renowned autism spokesperson and consultant to the livestock industry on animal behavior. She is widely celebrated as one of the first individuals on the autism spectrum to publicly share insights from her personal experience of autism. She is also the inventor of the "hug box", a device to calm those on the autism spectrum. In the 2010 Time 100, an annual list of the 100 most influential people in the world, she was named in the "Heroes" category. She was the subject of the award-winning, semi-biographical film, Temple Grandin.

Uncovering the Interpretation Process: Emphasizing Flexible Communicative Practises in Academia

Written by Rachel Kolb

“Let’s turn to talking about Derrida’s ideas about psychoanalytic temporality, and how this affects the construct of the signifier and the signified.”

This kind of sentence comes up on a regular basis in my graduate seminars, and immediately I see my American Sign Language interpreters’ faces contort and go, huh?

Granted, my interpreters are usually good at working through this, good at parsing through rapid-fire auditory information spoken in academese (truly more exotic of a language than ASL!) by a group of humanities scholars who do not need to access our institution, as I do, through real-time transliteration. Even while my professors and peers see me sitting beside them in class each week, as I attempt to be present and participate like they do, my guess is that only a few consider what this can be like. I don’t fault them this omission, not entirely. My experiences of being deaf in academia can be quite different than theirs as hearing people – although I would argue that these experiences are still adjacent, still interwoven with lessons about communication that resonate with us all.

So, Derrida. And something about signifiers. As I watch my interpreters listen to a sentence like this, then pause, then sign, the thought flashes across my mind; here we go again.

I have no choice but to jump in. I try to figure out, with interpreters, what my graduate seminar is currently discussing and how I can engage. We constantly deliberate (both on the fly in class and on a lengthier basis afterwards) how to sign certain words; are our signs nuanced and conceptually accurate? What if ASL has not developed a way to express that idea yet? How does one sign “signifier” and “signified”? We debate, come up with a new sign, try again the next time the word comes up in class. Throughout the process, remember that my interpreters, several of whom have been working as professionals for decades, are listening to our classroom discussion about Derrida without anything near a specialist background in the field. The concepts covered in my theory courses are difficult enough for specialist graduate students to listen to and understand; now imagine listening to and translating them on the fly for someone else, all without much (if any) conceptual exposure to what you are interpreting. Then, on top of that, imagine listening to the typically messy dynamics of human conversation: people speaking quickly, mumbling, sometimes interrupting each other, garbling their words, not considering how clear (or not) all this might sound to someone else. My interpreters flip through my class readings and try to prepare to interpret, but there are times when their ears and their brains can only do so much. There are times when, in the flurry of the moment, they show my hearing colleagues profound reservoirs of patience.

I admit, I sometimes like it when their patience fractures (or when mine does) and we need to stop and ask someone to repeat their words, but more clearly this time. These moments, even if they sometimes feel disruptive, can show how hard we both are working to occupy this space. These misunderstandings, these bits of missed information, can expose the bare bones of the interpreting process. For I am working hard, too: watching, thinking, correcting any mistakes, calculating what that utterance might really have meant, willing my retinal muscles to focus, converting sign language back into English in my head. I do this while sometimes feeling, I admit, envious of my hearing peers who can sit in class and just listen. The process of watching interpreters feels cognitively demanding, on top of the demands of the classroom material. Seeing ASL transliteration all day can consume all of my attention and all of my focus – something I used to shrug off as normal but something I now feel more pressed to acknowledge as unique. I often walk out of a challenging class and feel spent. I want to plop my brain into an ice bath.

The academic setting does not often acknowledge these kinds of hidden labors and hidden challenges for the deaf people in its midst. Even when access is presumably provided through a sign language interpreter, this does not mean the deaf person automatically will access the class, discussion, or conference setting the same way as a hearing person. Even if the deaf person chooses to use an alternative set of accommodations, such as Communication Access Real-time Translation (CART) or C-print captioning, many of the barriers I have described may still exist.

At the same time, I accept what I have decided to do in pursuing a PhD. I accept that, while working in academia, I will need to find a core group of skilled interpreters who will put effort into learning the specialist vocabulary for my field. I accept that I am among a generation of signing deaf individuals who now work and study in colleges and universities after living with the provisions of the Americans with Disabilities Act (ADA), and who are now helping develop the ASL lexicon to suit the academic work we do. I accept that watching ASL interpreters exposes me to a different kind of real-time cognitive load than my hearing colleagues may experience on a daily basis. All of these realities reemphasize the importance of developing new ways to pursue the same kind of excellence all my colleagues and mentors do, while acknowledging that my path might be a different one than theirs – as it has been all along. That path involves continuous advocacy and also attention to self-care, but it still can feel exciting. Along with other deaf and hard-of-hearing individuals, I am helping push forward a new frontier of language use and professional development. A few decades ago, aspiring deaf academics did not have these opportunities.

What I’d like to do is communicate the barriers that still are there, in situations where accessibility in name does not become full accessibility in practice. A sign language interpreter can become just a warm body in a room without adequate preparation or awareness. Using an interpreter can be an experience of making oneself extremely communication-savvy, of mastering good communication strategies that might not occur to some hearing colleagues but that can still help in expressing ideas more clearly. Among other pieces of savvy, I have learned these:

I recognize that information can be expressed visually and physically, not only auditorily – and that inclusion and comprehension will improve with more of these sensory channels, not fewer. I recognize that anyone can only take in so much information at a time, and that one cannot assume the knowledge base or background of one’s audience, even within a specialist field. I recognize the importance of being flexible, of repeating or rephrasing when needed, of altering my patterns of self-expression to connect with my audience. I have learned that I need to express my needs and recognize my limits in order to participate most fully in a conversation, and that other people do, too. Finally, I know that misunderstandings and needing to ask for clarifications are just part of life – and also good opportunities to deepen my knowledge, besides. Communication strategies that enable good sign-language interpretation are often good communication strategies, period.

It is not new to say that creating a culture of effective communication can benefit everyone, and not only a deaf academic and her interpreters, but it still bears repeating. Striving for a more open communicative culture requires advocacy and participation from everyone, not just anyone who is deaf. I have seen this before in academia: I have been in seminars where professors tactfully modulate the conversation for its rapidity and volume, write unfamiliar terms on the board or request that other students spell them out as they arise, include extensive written handouts to supplement oral discussion, or use a visual outline or live notes on a projected computer screen to help students follow what is being said. I have attended conferences and talks where the speaker regulates his or her own pace, includes a print-out of the presentation both on the spot and in advance, and provides a list of key terms (and their definitions) for interpreters and anyone else. Practices like these recognize that accessibility is not solely an institutional responsibility, in which formal accommodations are made, dispensed, used, end of story. Rather, they recognize that accessibility is also a collective, communal responsibility, in which all individuals can contribute toward a clear and inclusive communication environment.

Academia is not always the best at promoting clarity and accessibility, beyond formal accommodations. Discussions can be rapid-fire, solipsistic, full of jargon and assumptions that everyone receives information the same way. Creating better communication practices, both in the classroom and outside of it, will involve this kind of behavior shift. It will involve expressing individual needs and concerns, and also encouraging collective accountability – with the emphasis that good communicative practices can benefit everyone, not only those who identify as deaf or disabled.

About the Author

Photo of the author

Rachel Kolb is a Ph.D. student in the Department of English at Emory University, where she is also pursuing a graduate certificate in bioethics. She has prior master's degrees in literature and higher education from Stanford University and the University of Oxford, which she attended as a Rhodes scholar. Her research interests include 20th century American literature, disability and Deaf studies, science and literature, the health humanities, and how cultural ideas form about communication and embodiment. She is also committed to advancing public conversations about communication and accessibility, and her other written work includes publications in the New York Times and the Atlantic.