Wheely??

There are some benefits too being in a wheelchair, not a huge amount, but none the less there is.

I have a progressive muscle wasting disease (special hey) my disease of choice is Muscular Dystrophy Limb Girdle type 2b…that’s a good conversation stopper.

I have bad days, but I do try to ignore my impending future of carers, shitting myself, someone brushing my hair like I’m 5 and going to church, eating smushie food and people talking about the weather and looking at the ceiling trying to ignore the fact somebody is wiping my arse!

My time is divided between volunteering at my local community centre where I’m a voluntary youth worker, mother to a delightful daughter who is probably lucky I am not able to run and clothes line her, touring local garden centres with my old dear and enjoying laziness with my partner ( who I met on Tinder, but I will save that for another day).

Sometimes people unknown or known ask me things or make assumptions about me that makes me just look in oar at how utterly ignorant and stupid they are or occasionally funny.

I will give you some examples

1-Third person conversation

It has become clear to me, that alot of folk believe due to me not being able to lunge, walk or do the hokey pokey, that I can’t think for myself or have a conversation.

It was a sunny day, beautiful Hotel and me and my ol dear were perusing a wedding fair. The cakes, oh cake!

Good afternoon madam are you getting married”

Now you would think the 28 year old looking excited, was the object of the ladies attention…wrong. Lets presume the 56 yr old wearing a wedding ring is getting married, because the wheelchair lady can’t be ….surely.

So instantly over protective mother, goes into overdrive

No my daughter is” ( looking at me).

And just to make sure we never brought her cake, she talks to me through my mum, in a patronising tone with pity leaking out of her eyes.

🤦I can’t remember my mum’s exact words but it was something like

Why don’t you ask my daughter she is there….fuck sake”

2 – My vagina, my business

Sex is not a dirty word, it’s very natural…but, why is it the first question most want to ask?

Are you happy? Where did you meet? I mean, I don’t know most other questions about a new relationship would suffice. But I find the same questions pop up ALOT!

“Can you have sex?”

“How do you do it?”

I know it must be a burning question, but maybe leave that for the tenth question. Because I will give a stupid answer like no it’s healed up!

Us wheelchair people do have needs and there are ways round things but don’t be so stupid about it.

3 – Adults no, kids ok

Adults asking ignorant questions, pisses me off, use your brain, don’t be offensive, I mean I don’t ask you why your breasts are caressing your knees or why I can see your genitalia like a homicide chalk line!

But the exception are kids because they are genuinely interested, maybe new to disabilities and unphased.

I remember going too my local school to hold an anti bullying workshop, most kids weren’t interested in me or weirded out….but one boy, from across the room, was looking at me up and down, with inquisitive eyes and I swear I could almost hear his brain going into overdrive. Eventually he trundled over, stood infront of me, looked at my feet and slowly looked up to look at me, with a crooked mouth and said

What’s wrong with you”?

“I have muscular dystrophy which causes my muscles to get very weak”

“Oh ok bye”

No around the houses just bam, cheers and I’m off.

4 – making the most vs happy

Now I’m pretty relaxed most of the time about being in a wheelchair, but I have no choice, if I moan, I’ll spend my whole damn life moaning.

But my friend (a good friend), came round at the weekend and she said

” Oh my mate asked what do you miss most and if you could walk again would you?”

Now common sense (which I was always unsure she had, this confirmed it) would say, of course I want to walk.

“So if you could walk would you, I’m pretty sure I know answer?

Well obviously yes, if I could not be in a wheelchair I’d rather walk”

I said this with confusion because too me it’s a kinda one way answer. But too my absolute dismay, (but at the same time not wholely surprised because my friend is queen of saying dumb shit). She said

Oh…I said you wouldn’t give a shit”

I had to explain that I don’t like it but I just make most of what I can, she looked really shocked, still makes me smile, thinking of how stupid she really is.

Lesson of this is……don’t ever forget how idiotic people really are, always expect dumb!