I’ve had an idea for a Fantastic story since I was 14 years old. I’ve had Ulcerative Colitis since I was 11 years old. At the age of 22, I have only just begun to consider the possibility of combining my considerable knowledge of those two things and giving my main character a chronic illness similar to my UC. It may seem odd that I have only recently begun to consider representing my own illness in a Fantastic story. However, during a recent workshop at GIFCon 2019 (Glasgow International Fantasy Conversations), the discussion of disability representation in Fantasy (or lack thereof) brought some interesting points to light regarding society’s conception of disability which I had never previously considered. This discussion, alongside my already complex relationship with the concept of disability, prompted me to once again inflict my thoughts and opinions upon the internet.

I’ve always been uncomfortable when referring to myself as ‘disabled’. That’s why I don’t tend to do it. Instead, I refer to my Ulcerative Colitis as a ‘chronic illness’ instead of a ‘disability’. I would like to stress this is not because I think being disabled is a negative thing. Instead, it’s mostly due to the fact that I don’t think I am ill enough to be considered disabled. This is because of the nature of Ulcerative Colitis; it’s an illness that operates in periods of flare-ups and remission. The result is, I am not ill or in pain 24/7. When I am in remission, my mobility is not impeded and my cognitive abilities are not interrupted, among many other things. When I am in remission, my physical appearance does not suggest that there is anything wrong with me.

On the flipside, in the last 6 years I have probably spent more time experiencing flare-ups and active disease symptoms than I have spent in remission. My UC has been infuriatingly resistant to treatment and as a result, I have never experienced consecutive years of remission. Despite the frequency of my flare-ups and the severity of my disease, I still struggle with the idea that I have a ‘disability’, as I believe there are those who are in a far worse condition than I am. In short, I feel that I do not deserve to call myself disabled because I appear able-bodied to everyone else. Deep down, I know that I do have some right to call myself ‘disabled’, as there are plenty of things that I am unable to do when experiencing a flare-up which an able-bodied/non-chronically ill person could do. The prime example (and the most obvious) is that I must know where every single toilet is whenever I leave the house during a flare-up, as I sometimes visit the toilet up to 20 times a day and I have absolutely no control over this. Long car journeys are either out of the question or sources of extreme stress, anxiety and fear. Not to mention the chronic pain, fatigue and blood loss that accompanies severe inflammation. Life during a flare-up is utter hell and I would not wish it upon my worst enemy.

At GIFCon 2019’s workshop on disability representation in Fantasy literature/TV/cinema/etc, Dr Hayleigh Barclay really made me think about the concept of disability in an entirely new way when she asked the following question: Are we ‘disabled’ because there is something wrong with us or because society makes no room for us? This statement had a profound impact on the way I think about my own condition, as I previously hadn’t considered the idea of disability as a construct made by a society which either cannot or will not make changes to allow people with life-altering health problems to live easily with able-bodied people. I didn’t consider that my stress, anxiety and fear regarding a lack of public toilets while experiencing a flare-up was not something that was wrong with me, but something wrong with society. Lack of public toilets is a very small example of a much larger problem in making the outside world accessible to everyone’s needs, not just the able-bodied. It seems silly, almost like I was blaming myself for something that I have absolutely no control over. While the workshop did not make me feel any more comfortable with or ‘deserving’ of the label ‘disabled’, it did help me think more positively about living with my own disease and interacting with society’s failings.

This workshop was not just about the problems faced by disabled members of society, but about the lack of disability represented in Fantasy in a variety of media and the potential problems that arise whenever a disabled character is written into a Fantasy story. It got me thinking about IBD representation in literature, TV and film; from my experience this is completely limited to TV medical dramas. I certainly haven’t come across a Fantasy text where the main character has a disease similar to Ulcerative Colitis. The only example vaguely related to IBD that springs to my mind is the Bloody Flux/Pale Mare disease that plagues Meereen in George R.R. Martin’s A Song of Ice and Fire book series. The only similarity between Ulcerative Colitis and the Bloody Flux is that both involve (*CRUDE WORDS INCOMING*) shitting blood. Crucially, whereas the Bloody Flux is a highly contagious and fatal plague, Ulcerative Colitis is non-infectious and is rarely a direct cause of death. The illness is not represented in mainstream Fantasy unless it is heavily associated with death.

This brings me back to the idea for a Fantasy story that I have had since I was 14 years old. I haven’t made a lot of progress in actually writing this story in the 8 years since the idea came to me. The main reason for this is that I didn’t feel I was skilled enough to do it justice, so I decided to wait until I was older and – hopefully – better at writing before seriously trying to write it. In recent months I’ve come to the conclusion that I will probably never consider myself ‘skilled’ enough or ‘old enough’, therefore I should just get over myself and write the damn thing. After the workshop on disability representation in fantasy, I began toying with the idea of giving my main character a disease similar to my own. Disease may seem a strange word to use, indeed my own healthcare providers do not like using it as they fear it carries negative connotations of infection, plague and horrible symptoms that cannot be cured. However, I do not see it as a dirty word, I have no problem with referring to Ulcerative Colitis as a disease. Calling it anything else merely sugar-coats the truth: I have a disease that currently has no cure, no amount of wordplay will change that fact, so call a spade a spade (or call a disease a disease). Anyway, I digress. Without giving too much away about my very unfinished work-in-progress, my main character is a young female. I’ve always wanted to write something that I would want to read, which is perhaps why I am highly critical of my own work. My reading desires have shifted significantly over the years and after my recent epiphanies regarding disability representation in Fantasy, I now want to write a main character that has disability/chronic illness similar to my own.

The thing with disability/chronic illness/anything that is outside the ‘norm’ is that if you find yourself in possession of one of the aforementioned, you constantly seek representations of your situation so that you don’t feel like you are the only person in the world living with that particular set of circumstances. Perhaps if I had read more disabled characters in Fantasy literature when I was younger, I wouldn’t have had such a negative relationship with my own disease. If disability/chronic illness was normalised in literature and other media, maybe I wouldn’t have felt like an enormous burden or annoyance whenever I needed to drop whatever I was doing and run for the nearest toilet. It’s possible that by creating a young female main character in a Fantasy story with a shitting disease will help me deal with some of my own issues about being a young female with a shitting disease myself. And, if I ever finish it and if it ever gets published, maybe it will help other young females (or anyone else really, I don’t discriminate) deal with their own shitting diseases, or anything else that makes living in an uncompromising society difficult for them.