The Things People Say!
Posted by Lesley Greenwood on September 24, 2020
“MS? Ooh, that’s terrible, that is! You’ll end up like a jelly on the floor with that!”
So declared a woman I worked with many years ago, upon hearing the reason for my newly-acquired unsteady gait. These days I’d have simply enquired, “Which flavour?” and confused her completely because her intellect was, like her diplomatic skills, not exactly sharp, but as a 20-year-old struggling every day to still walk into the office with a modicum of dignity, I was flummoxed.
I hadn’t as yet developed the crispy coating I have, over the years, learned to cover myself with to protect me from such ‘slings and arrows.’ I recall not knowing how I was expected to respond to such thoughtlessness but then decided to just brush it off because, although I’d read all the blurb regarding my condition and seen all the doom-and-gloom adverts detailing how bad it could get (because how else is a charity to get folks to cough up their hard-earned cash without a bit of good, old-fashioned emotional blackmail?) I chose not to dwell on it because that would never be me, right?
I still don’t see myself as anything other than just me, an ordinary person. Sure I require a serious amount of equipment and help to enable me to function every day, but is the person who pops on a pair of glasses to see the television more clearly, or hops onto a train or into their car every day because they work 20 miles away, lessened by the fact they require these ‘tools’ to help them function? Of course they aren’t. Are they labelled by society as different because of it? Absolutely not and yet, for those of us who are differently-abled, this is often the case. Society labels us as different and to be either pitied or feared and that’s how we are often portrayed.
I recently came across this quote that the Scope Charity had made in 2014 that reinforced that thought. It said, “67% of the British Public feels uncomfortable talking to disabled people.” In truth this disabled diva has never found this, probably because I’m extremely gobby and refuse to be ignored! In fact I sometimes find that the opposite is true and that people’s natural filters – you know that innate sense that tells you what’s socially acceptable? – could often do with a little tweaking.
When my kids were younger they called me ‘an old man magnet’ because when I was out some octogenarian chap would invariably stop me and declare things like, “It’s terrible that a beautiful young woman like you should be in a wheelchair!” Now I’m aware that this was meant kindly and was a backhanded compliment, but I would find myself thinking would it somehow have been more acceptable to them if they’d thought I was plug-ugly? Would they have even stopped to speak to me? I mean where does it say that it’s actually ok for someone to be disabled if you, personally, don’t find them attractive? And who’s to say who’s beautiful or otherwise? Beauty, as they say, is in the eye of the beholder and whilst it’s flattering to be thought of as attractive, it was sad that, in their eyes, I was somehow diminished by my condition and they pitied me for it. They felt affronted that such a thing could happen and yet why not? Disability, like cancer or winning the lottery, is a quirk of Fate. Life turns on a sixpence and we all have a chance…
Of course it was often my determination not to be ignored and to promote the thought that it’s ok to engage a person with a disability in conversation in the same way you would with anyone else that would get me into this predicament because I like to look people in the eye and smile. A smile is a great ice-breaker, it’s welcoming and non-threatening, it says it’s ok to talk to me but it sometimes backfires on me, such as when, during my weekly Big Shop at my local supermarket, the same man would corner me, week in, week out, to offload in great detail, everything about his wife’s MS and tell me what a terrible thing it was, like I didn’t already know!
Sometimes what someone says is, again, meant as a compliment, but is not regarding the way I look. It’s meant, according to them, as a testament to their perception of me as plucky, with an inner steel and a determination to face my situation head-on and not moan. Don’t get me wrong, I know that it’s intended to make me feel good about myself, that somehow they’re saying that they think I’m better than they are, made of sterner stuff, but I’m not. Like I said, I’m just an ordinary person, trying to make the most of my life and I don’t choose to moan to everyone I see, because seriously, who’s at home to Mrs Moanalot? No-one, that’s who! Of course I do moan, I’m not a saint, I moan to my lovely husband. I had it written into our marriage vows especially. He promised to ‘love, honour, buy her an inordinate amount of handbags and listen to her moan!’
I’m happy to chat about any aspect of my disability, as I’m sure, if you’ve ever read any of my jottings, you’ll know, but a child’s natural curiosity once, about why I’m in a wheelchair was answered with a hissed, “Don’t stare!” by his embarrassed parent. I smiled at his mother, said it was ok and tried to explain to the child, in a very simple way, why and he was satisfied. He didn’t need to dwell on it and he wasn’t bothered or scared by it, which was great. My young step-grandson has never known me to not be in a wheelchair. He’s always just accepted me for who I am, just Lesley, because that’s exactly who I am, no better or worse than the next person. He’s aware that I need help with certain aspects of my life, but it’s not an issue for him, it’s just the way it is.
In order to even things out I’d like to see more people with disabilities in adverts, after all disabled people are consumers too! I’d like there to be more people with disabilities in films and on television, not as a special event, or as a token, but because it would reflect a ‘normal’ society and help dispel many of the myths and rumours surrounding disability. Let’s be like children. Let our natural curiosity about each other enable us to learn more about each other and to accept that we’re all, fundamentally, just the same.
Oh and as for the jelly? Well you can’t be kiwi, kiwi won’t set. I’m far more glam! I’d be Champagne and Elderflower! ;)
Lesley Greenwood enjoyed a modicum of success in a previous incarnation when her children were smaller, as a writer of pre-school children’s stories under her maiden name of Lesley Rees. These days, she lives in the countryside with her fabulous and long-suffering husband and has developed a passion for oak trees.
While officially classed as ‘severely disabled’ by certain short-sighted and ill-informed medics, she prefers to view herself as amazingly and extremely ‘differently-abled’ as she hurtles across the field in her super-sparkly, turbo-charged power chair.
Lesley lives with MS (multiple sclerosis) in the Midlands and has written previous blogs – The Day I Was Bitten By – The Beast!, Trains, Planes and Hotels, The Highs And Lows Of Retail Therapy and Losing That Lockdown Look!
Watch out for her next blog – it’s bound to be an interesting read!