Stop assuming, start listening

Author Shanta Everington has had a hidden impairment since she was a teenager. But she’s still waiting for a little understanding

I’m not a wheelchair-user. I don’t walk with crutches. Nor do I use a guide dog, white cane or hearing aid. I wasn’t born with any bodily parts missing and I haven’t lost any along the way.

Standing at five foot eight, in dress size 12-14, with brown hair and murky eyes, I‘m just Mrs Average.

When I met my midwife for the first time, she ran through her standard questions and asked, “Are you disabled?” and answered, “No,” without even looking up. It didn’t exactly create the right environment to engage in a discussion about my disability. Because I do have one.

During my adolescence, I developed a condition called scoliosis, a lateral curvature of the spine.

My spine is a dramatic S shape. Heck, if you could straighten it, I’d probably be seven foot tall.

I call it a “hidden disability”, because people don’t generally see me as disabled. It’s not that obvious if you look at me. From the front. With certain clothes on. But as the spine bends, the vertebrae twist and pull the ribcage round, which causes a rib hump at the back.

I certainly would have contested the word “hidden” when I was 15 and obsessing about my body and boys and everything else. You learn to accept yourself, although jokes about hunchbacks still make me flinch.

Let’s get one thing straight (poor choice of word). I don’t have a bad back. Add headaches, neck and shoulder pain, RSI, cramp in the right hip and leg, not to mention the coccyx problem. On bad days, just about the only bit that doesn’t hurt is my left leg.

A twisted spine pretty much affects everything else. According to celebrity nutritionist Dr Gillian McKeith, who also has scoli, my kidneys are having an awful time of it. I should be eating a lot more curly kale.

I’m not out for sympathy, just understanding. Once, on a training course, I requested a supportive chair facing the front, as sitting at an angle only exacerbates my symptoms.

I was met with a classroom-style plastic chair and was told there was only one comfy chair and a disabled person needed it. Er, hello?! I tried not to stare at the woman with the cushions as I pondered the hierarchy of disability and gave in to the pain that followed.

I subscribe to the social model of disability, that we are disabled not by our impairments but by society’s inability to accommodate us. Yes, I am afflicted by pain, but if people would stop making assumptions about me and start listening to my needs, my life would get a whole lot easier.

• Shanta is the author of two disability-themed novels. Visit www.shantaeverington.co.uk