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.

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