In a couple of weeks I have a wheelchair review meeting with the physio and technician from Wheelchair Services. We’ll talk about how the chair’s working for me and whether there’s anything that can make it even better.
Just over a year ago I wrote a post listing the pros and cons of getting a wheelchair. In preparation for this review I’ve been thinking about what my chair enables me to do now, and what I’d like it do better in the future.
This is an open letter to my Invacare Duo
Dear Chair, because of you:
• I can move freely around the office at work without needing my support worker for each tiny journey.
• I can move independently outdoors in places I’m very familiar with and respond quickly if I see something that needs doing.
• I can carry stuff on my lap or wedged between my legs. I find carrying stuff in my arms tricky, but thanks to your stable base I can move all sorts of things safely and effectively including children, giant beanbags, even jugs of juice.
• I injure myself a lot less. I can’t think of any face, head, or fall-related injuries that have happened while I’ve been with you. Previously I’d frequently scrape my face on the pavement or twist my ankle because of my chaotic leg tics.
• I can take better photographs. I’ve always loved photography – I studied it at college. My camera’s got a rubber case so it doesn’t hurt if I hit myself with it, but before you taking pictures was getting tricky because I’d often fall to the floor, spoiling the shot and risking my camera. You make getting and staying in a good position much simpler.
• I’ve been able go to places and do things that would’ve been completely impossible, risky or extremely tricky before you appeared – including: going shopping, dancing, visiting art galleries, attending music festivals and just generally roaming about.
• Since we’ve been together I haven’t fallen into any dog poo or broken glass, or had a ticcing fit in a urine-soaked loo.
• When I have a fit it’s less dangerous. It may not be massively comfy having one sitting down but it’s safe and I can be moved to somewhere dryer, warmer or more private if necessary. Since your arrival in my life I’ve had no ticcing fits on public highways in the rain, thanks.
• You make me feel in control. I can move myself about to speak to whoever I want, whenever I want. If I can’t hear someone or see something I can re-position myself so I can.
• My tics sometimes interrupt the ease with which I push myself along, but the rhythmic, repetitive movement helps keep my arms working in a functional way.
• Before you, short journeys seemed like feats of endurance. You make my mobility more reliable and sustainable because of the stability you give me. Who wants to go anywhere knowing they’ll fall hundreds of times en route?
• My mobility’s been improved in many ways, but so have my interactions with strangers. I’m treated with less fear and laughed at less and I’m sure this is because you’re a visible symbol I have a disability. Admittedly, I feel a little uncomfortable with this because of what it says about wider attitudes to disability, but there’s no doubt I get an easier ride when I’m with you
Like any relationship we’ve had our tough times and there are things I’d like you to do better.
• Your turning circle is HUGE! If you were a tighter turner I’d be able to get into my desk more easily, manoeuvre through doors with less drama and reduce the time I spend going backwards.
• I’m worried I’m over-working you. I hadn’t realised how much easier you’d make getting around and how significantly you’d improve my independence. Therefore I’d never envisaged being with you every day. I can see it’s taking its toll on you (bits falling off are the giveaway). I need you to be tougher, especially at work where we spend lots of time outside.
• I really need your front and back tyres to stay on and keep turning. Ideally you’d handle the haphazard London paving with slightly more style.
• I want to move you myself more than I can, but this is still quite tough. I accept that it takes both of us to make this happen and I need to practice and be fitter. But I think there are things about you that make this harder than it needs to be.
• There’s no getting around it, you’re a bit rickety – but I do love your quick-release wheels and fold-ability. This is important and means we can go pretty much everywhere together.
• You’ve given me a taste of independence and re-introduced a world in which I can (at times) move about by myself without having to wait for help. But now I want more.
I love you, but I know you can be better.
I had such conflicted feelings about getting a wheelchair. When I look back at my pros and cons list, many of them on both sides related to other people. At the time the two big worries I was balancing were how other people would perceive it, and concern about injuring and exhausting my support workers.
What I’d completely missed was the extent to which it would improve my quality of my life and sense of control. Who knows what the chair would say to me if it could speak?