As you may have gathered from the not-remotely-cryptic title, I’ve had my wheelchair for (a little over) a year now. It arrived on 8th December 2015 (ah, 2015, that year when the most traumatic thing to happen was my knee being pulled open and rebuilt), and sat, tantalisingly, at the end of my hospital bed, serving as the bribe to get me to bend that leg again so I could get the hell out of there and hit the roads, like the wonky Hunter S. Thompson I always knew I would be. Or something.
In the year since Ruby rolled into my life, I have learnt many exciting lessons, met many amazing people, and faced many frustrations. It seemed sensible to share some of these experiences, in the hope that someone like me may one day benefit from them.
1) ‘Accessible’ is a very vague term
It can mean whatever you want it to mean. As we’ve seen in recent articles, the Disability Act means diddly squit if there are no penalties for failing to meet the expectations, and guess what? There are no penalties. Regularly, I can turn up to a venue and find that what they have described as ‘disabled access’ means you can get in, but you can only pee if you go down a flight of stairs to the ‘disabled toilet’. This is a problem in bars. I am not a ‘one quiet drink’ kinda girl. I can do that at home, and save the journey. If you want to guarantee an accessible venue, you need to call ahead and spell out in words of one syllable exactly what you need. Even then, you may end up sat in the smoking area on Clapham High Street because your wheelchair is too wide for the gaps between the seats (Bodeans, I am looking at you).
2) Don’t move your legs!
Now, many people would see the ability to move one’s legs as a good thing. But do it on a bus, when you’re in a wheelchair, and the stares you will receive are amazing. The world has not caught up with the idea that not all wheelchair users are paraplegic. Stand up out of your chair, and you’ll get responses varying from “IT’S A MIRACLE!” to scornful tutting, and sharp intakes of breath. As a doctor, I tend to warn people when I’m going to stand up to examine them, and often reassure them that I won’t fall on them. I shouldn’t have to do this, but the looks of abject fear and occasional horror I am greeted with mean it’s easier just to do so. Here’s a tip, World; I know my legs and my body better than you. You are not (generally) a PIP assessor. The Daily Fail is not actually telling the truth when it tries to tell you that we’re all faking it for ‘benefits’. Disability is personal, and different for different people. Just lemme do my thing, and don’t judge me, in the same way that I don’t judge you.
3) BIG BOOBS.
Well, that got your attention.
Being on wheels changes your body, and your body image. It is nigh on impossible not to have a bit of a belly when you’re sat in a chair. It’s the positioning, and you might as well learn to love it. But your body changes in all sorts of ways; my shoulders have become broader, so jackets barely fit anymore, or if they do, I face the risk of a Hulk-moment where it tears apart in a moment of stress. And yes ladies, your pectoral muscles grow, which means your boobs can appear larger (and bras become a nightmare – more on this later). If like me, you spend some days in the chair and some days using sticks/crutches, then prepare for your brain to take some readjustment when you’re suddenly back to a ‘normal’ height and not staring up at people.
4) Be confident
People struggle with people in wheelchairs. It’s a whole minefield of etiquette that there is no real guide for. Some people crouch down to speak to me (Paediatricians. Every time.), others forget I’m there and have entire conversations with their back to me. Some try hard to pretend the chair doesn’t exist (which can be hilarious, especially when I run over their toes), others literally fall over themselves to ‘help’, which while well-intentioned, can actually be more of a pain. My tip for non-wheelies is to simply ask what I need, and I far prefer when people say ‘ask me if you need anything specific, but otherwise I’ll assume you have found a way to do things’ – the chances are, I have. Bizarrely, this social awkwardness often puts the wheelchair user in the more powerful position; while others freak out at the social complexities, we can get the hell on with it. World domination will soon be ours. As long as it doesn’t involve stairs.
5) Turn Up and Don’t Go…
Transport is a joke if you’re on wheels. Train companies ask you to give them 24 hours notice before you travel. Being a stubborn little wheelie, I refuse to do this. Half the time, I couldn’t if I wanted, because being a doctor doesn’t exactly lend itself to predictable working hours. If you are lucky enough to get on a train, you may well find yourself dumped in a random vestibule with no way of getting help if you need it, or on a train with no accessible loo within reach. Guards vary from lovely and determined to help, to monosyllabic, or worse, assume your colleague/friend is your carer (“Does she need a ramp?” “I’m not sure Dr Barham-Brown, do you?” “Well, I was considering levitation, but sure, let’s give the ramp a go…”). There is masses of progress to be made, and you should definitely check out the work of Transport For All, who are a fantastic charity fighting to improve things. In the meantime, getting a car saved my independence.
6) Fashion is not designed for us
I hate trousers. I love the fact that they cover my scar, and keep my legs warm in winter, but when you’re sat in a chair, the waistband is going to carve itself into your abdomen. If you prefer a low cut, DO NOT LEAN FORWARDS. You’ll basically end up naked. I now live in dresses, which is fine and all, but some variety would be nice.
Bras are the work of Satan. Wires suddenly dig into your underarms, and the sports bra I wore for last year’s 10k chafed my armpit so much that it blistered. The rest of me was good for another 5k, but my underarm threatening to bleed stopped that. So you get bigger boobs, and uncomfortable bras, which are simply not designed for the shapes we become or the movements we make. It’s a cruel joke, I tell you.
7) Accessories start conversations.
I am a big proponent of showing the world that wheelchair users are just as lovely and intelligent and capable as anyone else; we’re just built differently. My light up front wheels make people notice my chair in a positive way; I get daily comments from strangers about them, and I get to then say hello and not be remotely scary (most of the time). Even if it just gives people a smile, I like to think it shows that there can be a fun, humorous side to disability, and it helps me to make those little positive connections. I also have a bell. It’s pretty tiny and pathetic, but very satisfying. Ultimately, the chair is bloody obvious, and I can’t exactly hide it, so I might as well have fun with it!
8) Accentuate the Positives
Since becoming a wheelie, opportunities have opened up that I never dreamed of. I’ve been invited onto panels, I’ve been asked to join advisory groups, I’ve done more media work, and frankly, if you want someone to remember you, turning up on wheels is a pretty good way to do it! It’s not easy, of course it isn’t (pushing a chair in the rain or on ice is a nightmare!), but there are opportunities to be had, and amazing contacts to be made, and definitely positives to be found.
So that’s my wheelie year. At some point, I’ll blog about doctoring on wheels, which is a whole blog post in itself, but for now, I hope this helps people both in and out of the chair!