Take a moment think about what that term means. I’ll freely admit that it is an expression I would have used in the past. Before I took a moment to think about what it actually means.

I am posting just a few words of my own, here, then I strongly recommend you read what follows. I’ve nicked it from my niece. She happens to have a disability and happens to use a wheelchair. It’s a pretty serious disability, so she uses a wheelchair, or should I say her wheelchair rather a lot. She is certainly not bound by it.

I don’t want to detract from what you are (hopefully) about to read, but I would like to point out that Elizabeth is (to me, at least) rather special. She is actually pretty special in that her condition is the result of about a one in a billion chance, or maybe it was one in fourteen billion. Whatever. A billion is a big number, so you get the point. She is special to me, however, largely because I have known her since she was born – 30 something years already – and in all that time I have not once heard her grumble, complain or bitch about her condition. Not once. Yes, she has cause to grumble, complain and bitch about how people treat her because of her condition, but that is quite a different matter. I guess what I’m suggesting is that she has never sought pity. She’s just a normal young mum, dealing with the same things as everyone else, but in her own way and with help from those around her when necessary. I guess I should say that she is defined, to some extent, by her disability, albeit not in any negative sense. She is certainly not defined, bound nor confined by her wheelchair.

So, there we are. I have said more than enough. Please, read on.

HAVE YOU TRIED WALKING LATELY?

WHY WAS THE RECENT “A DAY IN MY WHEELS“ CAMPAIGN SO AWFUL?

This is so multifaceted I don’t even know where to begin. The campaign “a day in my wheels“ was started by a disabled individual, Sean O’Kelly, in an attempt to get abled people to understand what it’s like living with a disability where you need to use a wheelchair. Spinal Injury Ireland then took this phrase and used it as the tagline to challenge celebrities and politicians in Ireland to get them to understand what challenges Wheelchair users face. You might think, “oh that’s a nice thing to do“, and on the surface maybe it is. But there is nothing superficial about being in a wheelchair. This campaign was highlighted to me on Instagram stories, where a friend of mine had posted the video by Lorraine Keane, who had spent 24 hours pretending to be ‘disabled’.

1. Whose wheels? A day in my wheels – this is problematic right from the get go as everybody has a different experience in their own wheelchair. This could be because of their own disability or abilities, what they struggle with, what they don’t struggle with, whether they have somebody to help them or whether they are able to live independently. There isn’t a generic wheelchair user – everyone’s experience is completely different. To make this challenge at all realistic, would be almost impossible. It’s not enough to just sit in a wheelchair or put on a blindfold to know what it’s like to live with a disability. An able body sat in a wheelchair demonstrates literally nothing about the wheelchair user’s real experience. I can’t imagine disabled celebrities went into the public toilet, and shuffled awkwardly onto the wobbly toilet seat. They would’ve stood up, without the risk of falling and sitting in somebody else’s wee on the floor.

2. Playing dress-up by trying on a wheelchair for 24 hours shows you absolutely nothing about what it’s like to live as a wheelchair user – this includes people with spinal cord injuries and all sorts of other disabilities. As I’ve said, everyone’s disability and experience in a wheelchair is different and unique, and even for a specific wheelchair user every day can be different. You could take public transport to your workplace every day (many of us do actually work, shocking) and every day you have the stress of whether the bus that turns up will be accessible. What if it isn’t? How do you get to work then? Is there a local taxi firm that will take you in your wheelchair? What if a bolt comes loose on your wheelchair and you can’t fix it yourself? What if your stoma bag leaks and you’re not near an accessible toilet? None if these sort of themes were addressed at all.

3. The pity. The video from Lorraine Keane was choc-full of one main theme – pity. It was quite sickening. The words from her mouth were along the lines of counting her blessings that she’s not a wheelchair user, and how awful her day had been. There was sadness and dispair over not being able to pick somebody up in a car – because wheelchair users can’t possibly drive, right? There were assumptions around not being able to walk her dog, go for a sea swim or even pop to the shops. What does she think we do all day? Seriously?! Does she think wheelchair users do nothing of pleasure or have their own responsibilities? She started off the video beautifully, saying she thought she knew about what being disabled was like because she has three friends who are Wheelchair uses, which we all know is the global qualification for understanding disability. She went on to say “I cannot tell you how relieved I am to get out of that wheelchair”.

4. Spinal Injuries Ireland sanctioned this – what on earth were they thinking?! I know we’ve got a way to go to make attitudes towards disabled people better around the world. But Ireland, I mean come onnn. What decade are you stuck in? Are you going to be handing out free pats on the head, like literal ones?

5. The wheelchairs themselves – if you’re going to put on the wheelchair as your hero outfit for the day, make it realistic. The kind of ill-fitting chairs they sat in with their legs splayed apart, just perpetuates the ugly “poor them having to sit in those horrible things“ idea. Many wheelchair users have a chair which has been provided for them, often made-to-measure, and if it’s not provided by a wheelchair service, it has probably been bought privately and cost thousands of pounds/euros/dollars. You don’t often see a regular wheelchair user using this sort of supermarket style borrowed wheelchair. Surprisingly, many of us quite like the way our chairs look, and take pride in the appearance of our wheelchair as well as its functionality.

6. Please, please stop talking about disabled peoples lives without actually involving us. A lot of campaigning and fundraising happens for good reasons but often does not involve and consult actual disabled people living lives with all sorts of mobility aids, sensory or physical impairments learning difficulties. there is this notion of “we doing this for you, surely you can appreciate that”. But the problem is they’re not doing it for us, if they were they would’ve asked our opinions on whether this was a good idea before it even was allowed to happen. This was a stunt to make people in power feel better about themselves, to give commiserations to people whose bodies work a bit differently. In this wheelchair-pantomime there was no mention of systematic or societal changes that need to take place. There was no talk about the success of wheelchair users and disabled people, our talents and skills and how we can thrive and contribute given the access to what we need and want, by being given a voice and being listened to. There were massive leaps to ridiculous conclusions: “I was late for everything” – that has nothing to do with being a wheelchair user my dear. Yes some things might take longer but most of us can manage our daily timetables and not turn up late all the time. There was nothing about the fact that these wheelchairs, our mobility aids, give us freedom. Without my wheelchair I wouldn’t be able to go anywhere.

7. If you want to know what it is actually like to live with a disability, get to know somebody with a disability. Talk to them, ask them what the barriers are, what needs to change and what we can do together to change it. Involve us. Don’t feel sad for us, we are not your pity porn.

You can read more from Lizzy, here:

https://haveyoutriedwalkinglately.wordpress.com