How dare I make an effort today? I am in pain, like most days, but today – more so. So, I thought, I will put on my prettiest shoes, my brightest red lipstick, brush my hair and throw on a cheery patterned dress
…to pretend that I am me, I still have a voice, and I still love myself enough to care.
I will go into the city on this beautiful Friday and watch the world go by
…and maybe that might help me forget my pain.
The Nagging Voice
My husband remarks that I look beautiful and I can feel some of the shame of not being a ‘complete’ member of society ebb away slightly. But it’s there, burning and bubbling away in the background, underneath the lumpy joints, inside the supports I wear each day to hold me together.
I have made friends with this nagging voice which gives me hell alongside the pain. I have named it ‘Nagging Nancy’. She is a slightly ageing middle class housewife who never sits down as she has housework to do and a family to run. If I ever sit for a minute to catch my breath or even, God forbid, need a bed day, she comes in with a feather duster and a housecoat and tells me to get up, stop moaning and get on with it. Sometimes I am brave and tell her to do one and it feels like I am a teenager bunking off school again.
Judgements
My husband drives me to the city centre and parks the car in a Blue Badge disabled spot. We whip out my blue badge and ignore the laser eyes boring thorough the metal of the car at us. We wait for them to pass and hope no more ‘naysayers’ are approaching as I open the passenger door to gently lower my logs – yes logs, no typo – onto the ground, slide my body out of the car whilst trying not to wince.
I notice a woman in the corner of my eye, slow her walking pace a minute to stare in our direction and, whether fictitious or not, I swear she has made a full appraisal of the fact that I have a pretty dress on, make up and pretty shoes.
The audacity of making an effort is not afforded to those who are disabled. They must look disheveled in the eyes of all. Surely they must be downtrodden, dirty hair, deep sunken eyes and clothes with gaping holes through which their shame oozes an escape and is on display for all to see?
You see, my mind tells me, this lady believes that she is shelling out taxes for those who are not working, this means the benefit claimants and the disabled are thrown into that lot. We are in the land of the haves and have nots.
There are judgement subcategories for the disabled, those who are physically disabled and those who are mentally disabled. The physically disabled are looked upon as not entirely at fault for their disability, most of society can relate to a sore back and a broken ankle. Those in this subcategory get some sympathy and understanding as long as they are in a wheelchair and do not, at any cost, get out of the wheelchair. This will attract the most stares as this is not how a disabled person must behave; they expected to be eternally infirm and need a wheelchair for as long as they live or until they rejoin society and earn a working wage.
There are also those with a hidden physical disability too and they do not afford the same compassion as the more visible physically disabled. They are generally lumped with the mentally disabled.
And so to the mentally disabled judgement subcategory, now they are the misunderstood of our community.
Live Courageously
The general consensus is, surely we all suffer from a bad day here and there? The older generations argue that it was far worse when they went through the world wars and yet, they still survived and ‘kept going’… Those with a mental or a hidden condition should still be working and support themselves, I am told.
I am deaf and have Ehlers Danlos Syndrome plus a few other badges, as my husband says.
Despite all this, I am still a person and I feel beautiful. I crave soft fabrics on my skin and glittery make up adorning my face. These luxuries help me forget that I need a walking aid on my pain day. Beauty is in the eye of the beholder, so when I see my fellow ‘blue badgers’ glimmering, flashing and strut-wheeling across life, I applaud. For they have chosen to live life courageously, under the eagle-eyed scrutiny of those who do not know.
May we always shine and shimmer across life, enlightening all around us and render our world a rainbow of colour, a bit like a Unicorn with wheels!
Máire Grieves, 2022 – Máire is a writer based in Norfolk, a champion for those who do not have a voice. She loves spending her days writing, lolling around chatting to her four adult children and husband.
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