Today I was at an art class – the first clay class I have done since I was 18, but at the place I usually go to do my painting classes. I walked in, slightly late as usual due to totally missing my alarm, and stood next to another girl who happened to have a walker the same as mine. She was lovely, we had a laugh and I sat next to her as we worked.
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Shortly after, a woman came up to me and demanded to know “what was wrong with me.” This turned into 20 minutes of her telling me how her daughter was much more ill then me, and how she struggles so much but never thinks of herself as disabled, etc.
I have no issue with talking about disability, and I have absolutely no issue with not being the “worst off” person in the world, but I do have an issue with a stranger targeting me because I use a walking aid and trying to start a “who’s sicker” competition.
Using a walking aid was a very difficult decision for me. I spent a good 4 years walking around using an umbrella in place of a stick – it became part of my wardrobe, and I was never really seen without one. What people didn’t realize was that I was using it to steady myself constantly. I don’t think I really noticed it – I gradually became more and more dependent on it, and even on the sunniest days I would be out with it “just in case it rains – you know how changeable England can be.”
Last year things got a little more hairy with the umbrella tactic. I was unable to drive for 6 weeks due to medical reasons, which led me to tackling public transport. Now I don’t know how many people have played the game of trying to balance on a bus with a very uncooperative body, but I can quite safely tell you that it doesn’t end well. This particular scenario led me to fall forwards head first as the bus put its brakes on, narrowly catching the handle near the front, pulling my elbows, shoulders and knees out of place and breaking my beloved umbrella right in half. I scuttled off the bus as quickly as I could, wobbled home and hid away.
After seeing the doctor, I had a referral to an occupational therapist. I wasn’t expecting anything from her – I thought I may be told to just muddle through, but the list of suggestions seemed endless. I came out of that appointment with what seemed like almost every imaginable aid to suit a 90-year-old.
The first time I left the house with a walking stick I felt embarrassed, but the first time I left the house with a rollator I was absolutely mortified. I was convinced that everyone would look at me. I was convinced they would all judge me and think I was putting it on – so much so that I purchased a pair of mouse ears with the idea of “if people are going to stare at me, then I may as well give them something to stare at.” For the record – try it someday – there is something quite liberating about not caring about what anyone thinks of you, and making people smile at the same time.
That first trip was scary for about the first half an hour. I gradually got used to Dorris (yes I name my walking aids) and with shock I realized I had managed to be out of the house for 4 and a half hours. That was the first time in years that I had managed to be on my feet for so long. I was exhausted and in pain, but ecstatic.
I do still get stares and curious glances – but the pay off for me of not falling over, feeling less panicky about falling, and less pain overall (in both walking and not having weight on my back/shoulders from a bag) make it all so worthwhile that I don’t think twice. I struggle more to show this side in front of family – there is less understanding and perhaps more of a demand to see me as well. I spent so long hiding being ill that when it became unavoidable, nobody understood the decline, and so there is little for them to go on.
These aids have become so much of my independence that I forget I am walking with them. So when someone approaches me in such a way as the woman in my class did, I actually find it quite upsetting. I am more then just a disabled person with a mobility aid. I am more than just my illness. By all means approach me, but ask about the person behind the disability. See me for who I am – even if it is as a slightly quirky short person with a very odd choice of hair accessories.
Charlotte Hiller is creative and chatty. She’s in 30 and living with chronic illness. Ehlers-Danlos Syndrome (EDS), postural orthostatic tachycardia syndrome (POTS) and chronic pain have lead her to hiding herself away trying to prove that she’s invincible. It turns out she’s not superwoman! It’s time to start talking and time to start accepting.
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