A little while ago, I was asked by Anna Adams of the Rolling With Spina Bifida FB page, to write a story about my life with a disability for their website.
Reading her request, made me sit back and think about it for a long while, having been caught off-guard. I have no problem writing about Hydrocephalus and how it affects my life. It’s why Skyewaters.com has done so well and why I feel a growing need inside of me to advocate for myself, the condition and the millions across the globe.
However, it was the use of the word “disability” that threw me. I didn’t feel too comfortable with using that term on myself. Sure, I’ve written about it being an invisible illness and how other people should take heed that we are not faking. I’ve also seen questions from others in the FB groups asking about whether or not one can claim benefits for it. Don’t misunderstand, I’m not saying that others aren’t affected badly enough to warrant a disability claim or to state as much for themselves. I’m merely saying that being diagnosed later in life as opposed to being diagnosed at birth, especially accompanied by other illnesses (like Spina Bifida), I don’t quite feel like I do have a disability.
I acknowledge that I’ve had challenges which are probably not experienced by “normal” people. And, in saying that, I have to wonder if that makes me “abnormal“… but I digress.
It’s weird…because I honestly don’t see myself as having a disability despite knowing that I struggle with my short-term memory, cognitive skills and processing of information amongst other things. Did it make me feel uncomfortable..? I’d have to say yes, slightly. Did it have me questioning..? For sure!..so many things.
The one thing that stuck in my mind was, I too never looked at myself as anything but “normal“. I realised that, like people around me, because I don’t see a physical dependancy (be it crutches, a wheelchair, hearing aids, a guide dog, etc), it’s kind of hard for me to see myself as anything but able-bodied. I guess this would also explain why others don’t treat us any differently because they can’t physically see that we have this condition, unlike a person who is in a wheelchair, using crutches, wears a hearing aid, etc. and is treated accordingly.
I suppose the most comfortable position I reached in all of it is to take an honest hard look at myself. And, instead of calling myself disabled, I would rather say, my (in)ability to be the 100% version of the person I used to be before diagnosis and brain surgery, is who I am now…and that’s OK!
Since Skyewaters.com is all about awareness and giving a voice to others like me, I gave it my best shot and sent her this.
Do you regard it as a disability?
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Thank you for taking the time to read.
I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder. As much as these experiences are unique to me and my family, I’m sure others have experienced it too. My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!