Today I wanted to talk about a topic I’ve been thinking about for ages: Do I consider myself disabled? This is something I often consider when seeing various petitions about IBD-a passionate plea for those with Crohn’s Disease and Ulcerative Colitis to be recognised as having a disability, or perhaps to be given a blue badge. The term ‘invisible disability’ has gained traction too and it’s opening up a dialogue about what it means to have a condition that debilitates your life, without it being ‘visible’ to the naked eye.
Today, I’ve been asked by the team behind the disabled ‘Identities’ project (I’ll talk about that more in a moment) to try to generate a conversation about the label ‘disabled‘; whether those with chronic illness consider themselves disabled and what the word means to them.
It’s an incredibly difficult task (especially with a blog as I’d hate for my words to be taken out of context) because I feel that the experiences of those of us with IBD are so different. I’ll be honest when I first saw these petitions online; I shunned away from them; because I felt personally I didn’t see myself as disabled-there was a mismatch between my conceptions of myself and my disease on paper. I don’t need a blue badge and I rarely need to use a disabled toilet. I was already struggling to accept my condition, so being told I was ‘disabled’ was actually quite upsetting.
If I don’t look disabled, does that mean I’m not?
However, it was difficult to express this without feeling like I was telling someone THEY weren’t disabled. Without coming across as ‘bragging’ or being privileged. I think it’s such a contentious issue for autoimmune disease in particular: could I consider myself disabled one day and not the next?
When I think about it now, there are definitely times when my disease has disabled me significantly. For example, when I had my fistulotomy- I was dependent completely on my nurses and my family for weeks; unable to get around and my life was on hold. The other is undoubtedly having a life that to some extent does revolve around my medical needs: whether it’s hospital appointments or changing my career (a change for the better absolutely, but one that was necessary because of my disease). Even today as I type, my Crohn’s may be at the moment controlled, but that’s not to say I live a life completely free from it.
The Identities Campaign I mentioned earlier- asked three disabled people about what they thought of their identity. You can watch all three of them here but I wanted to share Umber’s directly on to my blog. I’ve watched it about five times now and it really resonated with me.
I’m not sure if Umber has IBD- it does sound like it doesn’t it?-but her experiences with an illness really mirrored mine. I love how she said that she resisted calling herself disabled for the longest time, and then finally found it freeing-so she could adapt her life. I guess this is exactly what I have done with my life!
The final thing I wanted to mention is that a universal label doesn’t necessarily increase the rights you have. I know lots of people strive for IBD to be labelled as a disability as they perceive it will help in the workplace-but health conditions are covered by the Equality Act 2010-meaning you are entitled to adjustments and can’t be discriminated against during the recruitment process. I’m not an expert on this but here’s a great guide by Crohn’s and Colitis UK.
I guess the point of the post is that labelling yourself as disabled, should ultimately be something empowering rather than feeling it restricts you; and that you don’t NEED to be considered ‘disabled’ (or indeed perceive yourself that way) to still get support in the workplace.
I really would go and watch the videos I’ve mentioned here. It’s a fantastic campaign and one I am fully behind- let’s start talking about what disability means to us all in the context of our health.
*I have collaborated with the Identity Project (supported by Bathing Solutions) on this post to spread the word*