The charity, Crohn’s and Colitis UK, recently launched a movement highlighting that #NotEveryDisabilityIsVisible and this raised the ‘Am I Disabled Enough?’ debate amongst those of us with inflammatory bowel disease (IBD) and stomas.
I conducted a few polls on Instagram, asking people if they considered their chronic illness or stoma to be a disability.
Out of the 259 people who answered the chronic illness poll, 55% of them categorised their illness (the majority being IBD) as a disability. Out of 168 people who answered the stoma bag poll, 52% of them defined their stoma bag as a disability. These numbers are pretty close.
I asked a further question to those who did consider themselves to be disabled: why? And many struggled to answer.
As someone who has both IBD and a stoma I find it really hard to answer this question too. Like those who took part in my poll I’m not 100% sure I can answer it definitively. On the one hand my IBD was incredibly debilitating, and when I had my ulcerative colitis (UC) infested colon, it controlled my whole life. I had to be a few steps from a bathroom at all times and if I was leaving the confines of my flat at any point I had to plan out where the best bathroom access was. I was spending an extensive amount of time in hospital and was essentially surviving, not living.
The Equality Act 2010 states:
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
In relation to the definition of disabled, my UC was more of a disability than my stoma bag is.
I may be missing my large intestine and I may poop into a bag, but my quality of life is a million times better now in comparison with the days when I had my colon. The UC limited everything I did in terms of movements, senses and activities, and had a substantially negative effect on my daily life so I can clearly see how this could be considered a disability.
Having a stoma can also be classed as having a disability, but this is where I struggle. I use a disabled (or accessible, as I prefer) toilet on occasion, as is my right. However, as someone once chose to tell me when I came out of a disabled toilet – ‘I don’t look disabled’. The discerning looks, tuts, and comments I get when using these facilities over the years has led me to now avoid them if I can.
If I get a bag leak though, I have to use a disabled bathroom because there is more space than a standard cubicle.
Also, when I take my bag off it smells bad and this is easier and less embarrassing to deal with in the disabled loo than it is in the normal toilets with a row of cubicles where other people may hear or smell what I’m ‘doing’. The key to avoiding this embarrassment is awareness for illnesses such as IBD and stoma bags, particularly in young people. We have to educate the world that not every disability or illness is visible.
So, I have needs that warrant the use of certain facilities but I’m more able now than I was when I had my UC infested colon; my ostomy doesn’t limit my movement, senses or activities in the same magnitude that my UC infested colon did.
Thanks to my stoma I’m able to do so much more now, and there’s a part of me that feels a little uncomfortable saying I am disabled.
This is because, like many others with a stoma who answered my poll, they associate a disability as something that inhibits your ability to go about daily life and they don’t see their stoma as something that stops them from doing anything. For me, identifying as disabled would mean I see my stoma as something that inhibits my ability to go about a normal life, and I want to show everyone that having a stoma bag doesn’t stop you from doing the things that you love. Even though I poo into a bag, my life has actually changed for the better.
I feel like it’s my job to show the world, being different isn’t a bad thing.
In my opinion, if I were to categorise my stoma as a disability, I would be contradicting this. I don’t want my use of stoma bags to define me or put me into a specific box. It’s a huge part of my life and I’m very proud of what I’ve done but I am more than just, the girl with the bag and I feel like placing myself in the bracket of disabled, means my bag defines who I am.
It’s something I wrestle with on a daily basis, but if you choose to identify either your chronic illness or stoma as a disability, then you are obviously within your rights to do so.
There isn’t a right or wrong answer; it is a completely personal journey. I associate my IBD as a disability due to the debilitating impact it had on my life, and when I compare that part of my life to now, my life is considerably better, I am more able with my bag than without it.