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Just because you can’t see it doesn’t mean it isn’t there

June 17th, 2013

Karen Bayly is a stroke survivor and a friend of the National Stroke Foundation.

During one of my pregnancies it was winter so I wore a coat to and from work and during my other pregnancy my belly didn’t pop out very far. As I stood up on public transport feeling so tired, dizzy and nauseous I worried I would pass out, I used to think about making a badge which said ‘yes I am pregnant and yes I would like to sit down’.

I have a friend who has MS. As she tires her body functions in decreasingly reliable ways and at times she uses a walking stick. Last year she travelled overseas with her dad on the understanding they’d take things slowly. At one tourist site there was an option to ride on a donkey up a steep hill rather than walking. Knowing there was no way she could walk it she paid up and rode the donkey. I read her blog post where she was justifiably upset and indignant after a stranger had abused her for being lazy.

I have another friend who, as a result of her stroke cannot walk very far and she has qualified for a disabled car parking sticker. A couple of weeks ago, as she was getting out of her car at the supermarket, she was abused by a passer-by for parking in a disabled car parking space.

I think because disabled car parking bays are identified with a wheel chair symbol we may mentally associate them with mobility aids. When my neighbour first moved in I noticed a disabled car parking sticker on her car. My neighbour doesn’t look disabled and my self talk was ‘I wonder if she transports an elderly relative around or if she works with people with a disability.’ When we got to know one another I opened up to her about my stroke. It was then that she told me about her own chronic illness which affects her ability to walk very far without rest breaks. I of all people, should have been more astute.

I read a book about a stroke survivor’s attempts to return to work. He couldn’t maintain his balance on a moving vehicle and faced daily issues on the bus when he asked other commuters if he could sit in the seat identified for ‘passengers with special needs’. (I’m not keen on the ’special’ label but that’s for another post.) Ultimately he gave up work as it was just too hard.

In my own case I expend extraordinary brain power to function in a way that people can’t tell I’ve had a stroke, but I promise that very I often I am in a lot of pain and my brain is so overloaded I feel like I have narcolepsy. Sometimes after a day at work I fall over on my way to the train station because as I fatigue I can’t feel my stroke affected foot.

I have limited feeling in the stroke affected side of my face and reduced touch sensation in my stroke affected hand. Last time I got new glasses the sales assistant repeatedly instructed me to put on my glasses using both hands as they would sit straighter on my face. I can’t feel if my glasses are on straight or not and know that if I handle glasses using my stroke affected hand I am likely to break them. Three times the sales assistant told me how to put on my glasses and three times I gave him a look which said ‘mind your own business, I’m am an intelligent adult, who is twice your age and I’ll put on my glasses any way I damn well choose’. When he came back at me the fourth time I snapped and informed him of my disabilities. I was having a day where my emotional resilience was at a low ebb.

So consider reframing your thinking to understand that many disabilities are not visible but that doesn’t invalidate a person’s eligibility to use disabled car parking or occupy a ’special needs’ seat on public transport.

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Author: DianaK Categories: News Tags:
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