11 Tips to Become a Confident Wheelchair User
I recently got a new wheelchair, well I got it almost a year ago, but things take time to get used to. You may have heard my moans. It wasn’t until I got my new wheels, a chair totally different than any I’ve had before, that I really considered the impact my wheelchair has on my life and what not having the right chair can mean to me. If you’re new to being on wheels, or have a new set of wheels, here are some things to keep in mind.
1. Driving doesn’t always come naturally.
If you see my PA or friend driving my wheelchair you’ll realize it isn’t as easy as it looks. It took practice to get this good. I’ve been driving since the age of 3. Can you imagine 3-year-old little me racing around? It’s terrifying, isn’t it. I have a 4-year-old niece and I wouldn’t let her loose in an electric wheelchair. Yet it was just the next step (ha) for me, the thing to do, like walking is for most I guess. I can’t really remember it much to be honest, I’ve been told I bashed into things and scratched door frames, which isn’t much different to now really. I remember being at playgroup and all the kids wanted a ride; that was the coolest way to make friends.
Every chair is different — the pressure needed, maneuverability, turning circle, width, length. My new wheelchair is my first mid-wheel drive, which means it can almost turn on the spot. That’s great for small spaces and tight corners, but not so great when I forget that the back of this chair turns with me.
Enjoy a bit of practice driving, get out in those open spaces. Do a wheelie if you can. Speed down a hill. There have got to be perks, right? One of my biggest irritants is people using the term “wheelchair-bound.” I am not wheelchair-bound. That implies being tied down unable to escape. Contrary to popular belief, I do not sleep in my wheelchair, and sometimes I get out of it. Some wheelchair users can also walk. Shocker, right?
2. It is freedom.
Having a suitable wheelchair enables me to have independence and freedom. It is not a restriction. It’s the difference between moving or not, leaving the house or not. Simple.The correct wheelchair for your needs is also crucial. I can’t just use any chair.Durability and maneuverability are everything. Finding a wheelchair to suit your lifestyle, or the lifestyle you want, is as important as getting a wheelchair at all. For me anyway. There’s no point me having wheels if I still don’t have independence.
Be fussy when choosing a chair. Try several first. You need to find your best pal, someone to live with day in and day out. It may accompany you on the bus, in the car, on holiday, in the rain, in the snow, at the cinema, at a festival, doing the housework, going to work, in the pub, at the park.
3. Fit matters.
You’d think getting a new wheelchair would be exciting, a cause for celebration. It’s not for many people. A millimeter change in position can make or break my independence. An armrest being slightly different can mean I can’t lift my cup of tea or get a fork to my mouth. Blowing my nose is a struggle at the best of times, but it was impossible until I got my chair just right. The little tweaks are what makes a wheelchair mine.
When you’re having a wheelchair fitting, you may not do daily life stuff. I didn’t try drinking tea, crocheting or typing. I should have. Take your time in getting the little things right. Don’t be afraid to ask multiple times for adjustments. A footplate two millimeters higher or a headrest a fraction to the left. Once you’ve got a chair you love, you may never want a new one.
4. Perseverance is key.
Not only do you need to persevere with getting a chair that is right for you and your lifestyle, having that “keep calm and carry on’ attitude can be key to getting around. It’s easy to get lost in the crowd or ignored when you’re half the height of the average Joe. Don’t be afraid to push in. Make yourself known. It wasn’t until I attended a few festivals that I got confident in crowds. If I didn’t stand my ground I’d literally get trampled on and tripped over. My method now is to just go, go, go. I’m very aware of the people around me. An ocean of legs and feet. But still I keep on plowing through, as I know if I stopped to let just one group push past it would be the end of me. My focus would be gone, pathway gone, flow non-existent. The same goes for automatic doors and getting in an elevator.
5. Don’t assume you can’t go in.
The back entrance, a side door, a hidden alley shouldn’t be how we enter a building, but sometimes that’s the case. It’s not OK, but it’s better than not going in. Always ask for access if it isn’t obvious. Some places have hidden ramps and doors. If they don’t, tell them they should. Having a portable, fold-up ramp is great for visiting friends and family. When you use wheels and start getting invited to other people’s houses, you start to realize how inaccessible they actually are.
6. Expect to become a leaning post, but don’t accept it.
You will undoubtedly get leaned on, sometimes multiple times a day. Many people don’t seem to understand that your wheelchair becomes a part of you, an extension of your body. You wouldn’t just lean on a random person’s shoulder without permission, but others will lean on your handlebars, slouch on your armrest, put their feet up on your footrests. My footrest, where my feet live. The best way to rid yourself of this irritant is short, sharp movements — not intended to hurt, just to wake the culprit into realizing you are a moving, living being.
7. Your wheelchair will become a part of you.
You’ll become protective, attached (not just physically) and proud of your new wheelchair. Dare anyone to diss your wheels. My wheels are my life, my independence. They allow and enable me to explore the world. They are my friend and nobody should mess with them.
8. Buckle up, it’s an adventure out there.
Having wheels opens up a whole world of possibilities and ground surfaces. Wheels have all the feels. Dropped curbs. Ha. I don’t know what the specifications of a dropped curb / curb cut are (you know, those places in the pavement where there’s no step), but I do know there’s no such thing as smooth ground. Wheels highlight every little bump and hole. You will learn to slalom like a pro. It will become second nature on your well-used trails; you’ll find yourself automatically keeping to the left or right to avoid a drain cover or crater. Cobbles, shingles, grass and wonky pavements all become a challenge to be defeated.
9. People are often friendly.
You might get a few stares and sideways glances. Some people haven’t yet realized wheelchairs are from the same planet as them. You may also get raised voices and spoken to in slow motion, but on the whole, people are good. Assumptions are irritating and people can be ignorant. It happens. Don’t take offense at the little old man or overbearing granny when they ask “are you OK?” “Do you need help?” “Where’s your mum?” Take the higher ground and assure them you are in fact fine, just getting on with your day. If you do need help, ask.
10. Know your style.
One of the biggest yet unexpected challenges of always sitting down is clothing. Things look very different when worn in a wheelchair, there’s no changing it. There are also very few wheelchair-using models, and rarely a fully accessible changing room. But that’s another rant. You’ll learn what looks good on you, what is comfortable, practical and what will fit. I wear trousers and shoes that are a size too big for me. But who knows, or cares. Own your style and don’t lose you.
11. Make things work for you.
Being a wheelchair user can push you to become creative at adapting situations to work for you. Don’t be put off after a first try of something. Think of how it could work if the task was undertaken differently or the environment was arranged in another way. I always appear to be sitting at a table awkwardly, perched up the corner or parked at an angle, but it works for me. Whatever works for you is what you should do. I like to have multiple things within reach at a time. I have a desk set up (a friend calls it my “daily life” table), where all the things I may want in a day are within reach. Sometimes it feels good not having to ask for help. Think about your house set up, bedroom, kitchen. Make space and have things within reach.