Image courtesy of Cecilia White.
Can you tell us a bit about yourself, and the disability which you experience?
I’m Cecilia, a MA graduate from the Centre for Medieval and Early Modern Studies (MEMS) at the University of Kent who specializes in medieval women, textiles and experimental archaeology. In September, I am going to be starting a PhD at the University of Edinburgh, looking at the effects of the Black Death on the social position of English women, and how this was expressed through their garments.
My primary disability is Ehlers Danlos Syndrome (EDS), a connective tissue disorder that is genetic. Until around four years ago it was a minor problem, but I was put on medication that rapidly exacerbated the problem and which has caused permanent damage. As well as this, I am on the autistic spectrum, although I do not consider this a major problem.
How does your disability affect / impact your studies and research?
The main issue I have is that, because the symptoms of EDS are often variable and stress triggered, it makes planning my time both difficult and essential. Most notably, my hands are particularly likely to suffer both pain and dislocation. This is more often the case if I have to type or write for long periods of time or have to lift heavy objects, meaning I have to set aside a lot of time for assignment writing and I have to factor in very regular writing breaks to prevent causing a pain flare. Additionally, accessing print only books or other physical resources can be a problem as particularly heavy objects can cause strain on the joints, meaning that it can be hard to access resources which are not provided in more accessible formats such as e-books.
EDS also makes any travel for research difficult as it limits the amount I can do in a day; if I have to travel for research this takes a significant chunk out of what I will be able to achieve. The extent of the problem is such that even sitting for extended periods of time in classes or navigating a library can cause pain to flare to a debilitating level, although this is not predictable. It is hard to anticipate whether I will be able to spend a full day examining something or whether an hour into a class I will be crying in pain and unable to move for a day or two afterwards. In some ways, the unpredictability is the hardest part as it makes it difficult to plan and mitigate problems.
A final problem on the EDS side is the pain often makes it hard to concentrate, both on reading and writing, especially as my condition makes it so EDS related pain does not respond to painkillers. The pain is also a type that often is not consistent. If my wrist was in a constant state of pain, I would mostly be able to apply braces and ignore it. However, more usually the pain will start with a stabbing pain in one wrist, before moving to another joint and so on. The movement and stabbing nature thus tends to break focus and can make it hard to hold together coherent thoughts.
In regards to my autism, the problems I experience are usually less severe, but more complex. In terms of accessing sources, my mind tends to be very literal about interpretations and it takes effort to think of less literal interpretations or to process comments. Processing verbal information is also significantly more difficult as opposed to written. Additionally, it makes my concentration very variable in nature. If I have an imminent deadline or find the topic fascinating, I have no problem reading a text. However, if I need to read something I find boring, unengaging or which has the wrong level of novelty. then forcing my brain to focus can often be very difficult. In particular, I have noticed that If I am tired then I have to read something I have already read or else I cannot follow; however, this often lacks the stimulation of new and complex literature which often leads to boredom. This interacts particularly badly with my physical need to pace myself and so can make background reading on a topic quite difficult.
Finally, the social elements of autism can be a major problem, in that I find it both difficult and stressful approaching people. While this is easier with people I am familiar with, I will often have to go through multiple drafts, rehearsals and checks with friendly non-autistic people before I am able to contact someone which takes up both time and physical ability that would be more usefully used somewhere else. Equally, I will then spend a long time over-analysing my responses to make sure I understood them correctly. This, combined with the numerous responsibilities of a student, such as presentations and communicating with teachers, adds an extra layer of challenge.
What are some effective strategies you have used to help you overcome / work with or incorporate your disability into your studies?
The primary strategy I use for EDS is, as previously mentioned, pacing myself and allotting large chunks of time for any assignment. I will often gather as many of the necessary resources long in advance and build myself a study nest so I have enough space to rearrange my limbs and easily reach my resources if one becomes stiff and painful. Additionally, I will access as many resources as I can online to minimize hand strain. Where necessary, I will also wear joint braces. Pacing and bracing are the only two strategies I use since EDS was only recently (2004) recognised as a disability; as such, there is little research and knowledge of how to manage the condition beyond these methods.
With regards to concentration difficulties, I have a number of management strategies. Firstly, I will set my own deadlines which I can miss; this lowers my stress levels and helps to motivate me to overcome concentration blocks. If I have multiple assignments due close together, I will block my time to alternate between each assignment with breaks splitting each one up. If it is the only work I have, I will break up blocks with a number of simple logic based games which help my brain to relax and not hyperfocus to the point of causing myself mental strain.
Lastly, on social problems, I mostly rely on family and friends who are understanding of the problems and willing to do things like check through written communications. They work or talk me through rationalizing contact to make me feel more prepared and less stressed about interactions. Google is also often used if there is a particular format to a type of communication as knowing the rules in advance and having somewhere to check them over also helps.
Have you found there to be benefits of living with your condition and anything that has helped you with your studies?
Yes, mostly on the autism side. I have found that postgraduate study is often quite autism friendly in that it rewards hyperfocus and info-dumping. It can actually be very beneficial as you are often expected to be able to focus on one topic for days on end, learn every detail of it, near obsessively researching further sources and conveying it to others. It can also be rewarding as my autism bestows very lateral thinking, which helps in making off-the-wall mental links between parts of a topic.
Is there anything about living with your disability that others do not know and you think they should?
EDS, in its minor form (Hypermobility), is pretty common, but since there is less than twenty years of research into the condition, it is hard to say what people should be aware of. The only thing I can think of that I believe others should understand is that for many sufferers of EDS, all the obvious solutions have already been tried. If any treatments do work, then it is likely that many sufferers are already using them. In most cases, taking painkillers is fundamentally useless as EDS actively prevents them from actually working.
For autism? My main point would be that girls can be autistic too. It presents differently in women, and it does not magically disappear when you hit 18; it does not make you stupid, childlike or immature or any other of those stereotypes. Also, liking routine and being able to hyperfocus does not in fact mean we all like repetitive tasks. I could probably go on for a while about this, as I am quite aware it is a bit of a contentious subject; most people do not realize I am on the spectrum as I have done jobs like tour guiding that most people think, as an autistic adult, I should not be able to do. It is quite frustrating.
The last thing I think I wish was better known is that it is not uncommon to have multiple disabilities simultaneously, especially as they often tend to interact. EDS and autism is a particularly common combination, and there can be a lot of other related conditions.
How do you feel the research institutions and libraries support your specific needs as a researcher? And are there aspects of your experience of research which could have been better supported by these environments?
I have little experience, despite two degrees, of support from universities for my conditions. During my MA, it was better as student support at least contacted me, not expecting me to contact them (very helpful with regards to my autism). The main support they provided was an allowance for extra time in exams and easing the extension process on assignments. This was in contrast to the support I received during my undergraduate degree, where there was precisely no help whatsoever.
As mentioned before, due to the limited understanding of EDS, it is hard to work out the ways universities can help. The main ones I can think of are, in long lectures, mandating a pause maybe once an hour to allow moving around to help with joint pain. They could also try and keep subject areas focussed to being taught in relatively concentrated areas on the university campuses to lessen the commute between classes, as well as making sure that all classes are streamed and preferably recorded, as has been done throughout the pandemic. This would help students who cannot travel unnecessarily and those who need to catch up on classes missed due to illness.
To address my autism, I would suggest having a section of the website with basic guides (including in non-video accessible formats) such as ‘contacting lecturer/supervisor/other academic’ style guides or templates and simple guides for types of assignments that students are likely to receive. It would help so much just having a chunk of moodle you can go look at with such examples, especially if there are subject specific conventions.
On the subject of libraries, I have a few points. The first is having an option along the line of small trollies or something else that helps with carrying texts. While I know Templeman Library had an option to have books delivered, often the best way to find relevant texts is to look at what else has been filed on the shelves, so some method of bringing them to a borrowing desk without having to carry them would be helpful. The other would be if libraries could improve their access to digital resources, including subscribing to a broader range of places to access books online.