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.