Firstly, I should mention that this post is anonymous and explain the reasons for making it so: despite the majority of my experiences with people in academia being positive and demonstrating a willingness to empathise with people with chronic illnesses and disabilities, there is still a small number of people who have never experienced such problems and see them as tantamount to laziness. Although I have never been quite so insensitive as that in my view, I must admit that, as a student, before I fully experienced the obstacles of my condition, I would hubristically declare that I had never made use of extensions etc. and that completing an essay on time – even if serious issues had arisen – was simply a case of mind over matter.
My position changed when, at the beginning of the third year of my undergraduate degree, I was diagnosed with Crohn’s Disease which had developed to such a severity that I was immediately referred for an operation without having to be put on a waiting list. Now, the lessons that people need to listen to their body and not sell themselves to academia is probably quite pertinent to all involved in academia. However, the point I am trying to make is that I only really understood that some things are not a matter of mind over matter when I had first-hand experience of such problems. Believe me, I tried to overcome it!
When I was sent for my operation, it was prime essay writing time and I had resolved that I would not require an extension. The nurses, for one, were not impressed at having to carry my bags when I moved beds because I had brought 20, or so, books with me into hospital in the vague hope that I would still get some work done in my post-operation morphine haze. Needless to say, I didn’t read a single word in hospital, nor for a substantial amount of time after that because, though I was able to do some everyday things, my mind was not in a position to do the proper intellectual work required of me. Eventually I did get an extension and one of the essays I produced at that time produced the basis of my first publication. I doubt that my work would have been of this quality if I had done that research in the immediate days following my operation.
However, it is unlikely that most people in academia will gain such a nuanced understanding of just how limiting and unseen disability can be, simply because most will, fortunately, never have such extreme personal experiences. Consequently, academia does harbour a small population of people ignorant of chronic health and disability issues; and due to the highly competitive nature of academia and the heavyweight requirements of professorships and senior positions it is unlikely that people who have experienced disadvantage get into positions of seniority. All this means that, in general, the people responsible for recruitment, promotions and other necessary elements of academia are more likely to have little or no experience of what it is like to suffer such disadvantage and judge shortfalls in output or occasional need for sick leave as indicative of laziness or lack of commitment to academia. And this is why I have chosen to keep this post anonymous: as I am still completing my PhD I still have many hurdles to tackle in my way to becoming a faculty member, and though I could do it convincingly, explaining to an employment panel why I would be just as valuable a faculty member as an equivalent applicant without a chronic health condition or disability, if possible I would rather not have to, regardless of the existence of discrimination legislation.
This is because there are simply some things which will remain a disadvantage to me regardless of any help provided whether as staff or a student. For example, I have daily problems with my eyes which I can relieve, to some extent, by wearing sunglasses; and though this allows me to continue reading, if slowly and with less comprehension, I am reluctant to do so in any situation which could be described as public. This is because there is social awkwardness around people wearing sunglasses inside; whenever I put sunglasses on in public I feel highly conspicuous and so have given up trying. Consequently, I do most of my research at home and any time I try to put to good use when required to stay on campus for a few hours is usually interrupted and spent squinting at books which I subsequently have to reread at home.
Another example from when I was doing my MA would be when I was essentially disadvantaged despite being given extra time to complete assessments: due to a significant flare-up I was given a month extension on my first round of essays but because of the very tight schedule in full-time MA study (and deadlines for PhD funding proposals) I had to redirect my attentions without being able to make use of my extension, despite still being ill at the time. At the subsequent exam board this problem was acknowledged and permission to resubmit given, but once again I could not make use of this because of my looming dissertation deadline which was exempt from the provision of extensions. This left me with an unusually low mark which then brought my average below 70 and determining my eventual degree classification.
Of course, this may sound bitter or as though I am attempting to make excuses for my performance – and I wouldn’t blame anyone reading this for thinking so: it does sound a bit like it. However, what I am trying to emphasise here is the fact that there are some elements of my circumstances which are beyond my control; and I am ok with that. Yes, my illness intervened in my studies in such a way that I was disadvantaged relative to other students, and the harsh reality was that the exam board could only help me in a limited way and were unable to make my disease magically disappear. But it is only one form of disadvantage and, unlike the insidious underrepresentation of ethnic minorities in academia and women in particular at professorial level, I can and have developed a way of working which goes as far as possible towards mitigating my chronic illness:
For example, I am more home-based than anyone that I have met in academia because I feel more comfortable and am able to react quickly and adequately if I get the beginnings of a flare-up. Such an approach has affected my productivity on some occasions but has, in the long run, prevented me from needing extended periods of recovery which I would have otherwise incurred if I had continued to work without consideration of my body. I believe that as a consequence I have a more balanced view of what I want out of academia: I want to be someone who does academia, not an academic; I do want to ‘to hunt in the morning, fish in the afternoon, rear cattle in the evening, criticise after dinner,’ to borrow Marx and Engel’s way of putting it. Furthermore, I believe I may not have reached such a balanced conclusion without my experience of chronic illness, certainly not so quickly. In this respect Crohn’s disease is one and the same thing as my determination and commitment to academia, it has developed concurrently with it to such an extent that I agree with the sentiment often reported by those who have experienced difficulties which have impacted upon their mental health: that I would no longer feel me without it and the endurance of my past is what gives the real meaning of where I am now. In short, I concur with Nietzsche’s, not so tactfully expressed, statement:
To those human beings who are of any concern to me I wish suffering, desolation, sickness, ill-treatment, indignities – I wish that they should not remain unfamiliar with profound self-contempt, the torture of self-mistrust, the wretchedness of the vanquished: I have no pity for them, because I wish them the only thing that can prove today whether one is worth anything or not – that one endures.
I do, indeed, believe that meaning is constructed through difficulty and I would rather have what I have than no difficulty at all. I am, therefore, proud of what I have overcome to get where I am now and happy to face the same challenges in the future, yet I am reluctant to relinquish the right to nondisclosure of my condition. I, therefore, wonder about how different having a seen disability would be and whether I would feel so empowered were I denied the opportunity to choose who I tell. As I indicated in the beginning, I think it is almost impossible to get a true sense of how that would feel unless it actually happened to me. I, therefore, believe that the distinction held between seen and unseen disabilities/chronic health conditions is well placed. Of course we are progressing in our recognition of unseen disabilities/chronic health conditions, and that is absolutely the right way to go, but I still feel that disabilist attitudes are most harmful to those who practically don’t have recourse to nondisclosure, those with seen disabilities.