Ableds Are Weird!?

The recent trending Twitter hashtag #AbledsAreWeird, created by disability activist Crutches&Spice, has got me thinking about my own encounters and interactions with able-bodied society.

Uncomfortable? Awkward? Frustrating? Yup!

Here are some examples of my experiences as a non-ambulatory wheelchair-user (with Ullrich Congenital Muscular Dystrophy). I’m sure they are not unique to me!

Let me know if you can relate to any of the following scenarios…


Accessibility

Stranger: There’s only a few steps.
Me: I can’t walk, hence the chair.
Stranger: They’re only small steps.
Me: Nope, still can’t walk I’m afraid.
Stranger: Oh, not even with assistance?
Me: Not even with assistance.
Stranger: Not even a little bit?
Me: Not even a little bit.
Stranger: Not at all?
Me: Not at all.

Awkward, deafening silence…

Stranger: There are steps but we can just lift you (in a powered wheelchair).
Me: Thanks but this chair is really heavy. There’s no way you’ll lift it.

Stranger then attempts to lift me in my wheelchair, only to complains of the weight.

Stuck in a long queue of fit, young able-bods who look me up and down (in my wheelchair) but still choose to wait for the one and only lift/elevator rather than take the stairs, which would be much quicker!

A young driver in flashy sports car races into a blue badge bay and gets out without displaying a badge.
Me: Excuse me, have you got a blue badge?
Driver: No! Have YOU?!
Me: YEP! (waving my blue badge at the driver while sat in my Motability WAV).

Being unable to access public disabled toilets because they’re being used for storage!

Entering a public disabled toilet after a mother and baby have just used it. It absolutely stinks and there are used nappies on the floor!

Online Dating

Guy: okay, can I be honest?
Me: yes.
Guy: let’s be real, you’re no one’s type. Are you!
Me: erm, thanks!

Me: I can’t walk. I have something called muscular dystrophy.
Guy: oh. Right. Okay…
Me: yup…
Guy: so is that something you could change if you work on your fitness?
Me: no. Afraid not.
Guy: not even if you try really hard and actually make an effort?

Me: I’m a wheelchair-user.
Guy: oh right, what’s wrong with you? You self-propel, yeah?
Me: no I can’t do that, and there’s nothing wrong with me.
Guy: but I’ve seen some really fit girls in wheelchairs. They play basketball and all sorts!
Me: yeah, that’s never gonna be me. Sorry.

Me: I’m a wheelchair-user. I can’t walk at all.
Guy: oh, okay. What happened?
Me: nothing happened. I have something called muscular dystrophy.
Guy: I just Googled it. Wow that really is a disease isn’t it!!
Me: fear not, it isn’t contagious.

Guy: oh, so you can’t walk at all?
Me: yeah that’s right, I have muscular dystrophy so I can’t weight-bear. I use a powered wheelchair.
Guy: okay….
Me: it’s fine if you want to ask questions.
Guy: so…you don’t have sex then??
Me: why’s that?
Guy: well, I’m guessing you can’t feel anything…you know.

Woman: aww, I’m sure you’ll find a nice guy in a wheelchair to date!
Me: or just a nice guy!?

Social Worker Review

Assessor: are you able to make your own decisions?
Me: yes.
Assessor: always?
Me: yes.
Assessor: (with a sceptical expression) but…if you needed advice when making a decision, who would you ask?
Me: myself!?

Socialising

Stranger, whilst leaning over, “It’s good to see you getting out and about”

At a restaurant with a group of friends, all of whom are able-bodied. Waiter comes to our table, looks at me in my wheelchair, and starts rambling about a friend of his who lives near a Paralympian. None of us know quite how to respond.

At the pub with a friend who goes to the bar to get us drinks. When she returns, she says a guy at the bar who she knows told her he didn’t realise she’s now a carer. She had to stop and think for a moment and then replied, “I’m not her carer. I’m her friend! We’ve known each other almost 20 years!”
The guy looked absolutely dumbfounded.

Driving & Mobility

“Wow, you learned to drive? Is that safe? Did you have a special instructor and a special test?”

“Your wheelchair’s a bit battered. Looks like you could do with a new one! I suppose you just call and get a replacement through the NHS?”

“Do you have to have training and a test to drive that thing? [my powered wheelchair]”

“They [wheelchairs] cost HOW MUCH?! Why are they so expensive? Can’t you just save up?”

University

“Oh, you went to university? Good for you! It’s something for you to do, isn’t it. How did you manage though?”


You may also like Life as a Wheelchair-user | Societal Preconceptions

World Toilet Day

19th November 2018 ~ #WorldToiletDay

I am 30 years old, and I have the progressive condition, Ullrich congenital muscular dystrophy. As a result, I am completely non-ambulant. I use a powered wheelchair and am unable to transfer without the use of a hoist and support from carers.

Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold in the urge all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening. Living with dehydration, impaired mental function and recurrent infections, simply because adequate toileting facilities are not made available to you.

#FitToBurst

This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course, I didn’t want an operation, a General Anaesthetic (in itself a huge risk due to my poor lung function) or an indwelling catheter. By no means is this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.

So, I resigned myself to the only option available to me at that time; a suprapubic catheter. With this, I no longer need to transfer from my wheelchair or depend on other people. I don’t have to struggle and suffer the indignity of using small, dirty and ill-equipped public disabled toilets. But, 250,000 disabled people in the UK still do.

Often, there is not enough room to fit a wheelchair in a disabled toilet, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists…what hoists?!

The majority of disabled toilets I have used throughout my life have been vastly inadequate, filthy, often neglected or used for storage!

I think it’s important that there are Changing Places facilities everywhere, including smaller towns, villages and rurally as there are many disabled people (like me) resident in these locations too.

#incLOOsion

The lack of such essential facilities locally makes me feel restricted, excluded from society and considered less important.


The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began.

Each registered Changes Places toilet includes:

1. – a height adjustable adult-sized changing bench

2. – a tracking hoist system, or mobile hoist where not possible

3. – adequate space for the disabled person and up to two carers

4. – a centrally placed toilet with room either side

5. – a screen or curtain for privacy

6. – wide tear off paper roll to cover the bench

7. – a large waste bin for disposable pads

8. – a non-slip floor


Join the #RevoLOOtion!