Taking a seat
I was browsing Reddit this morning and found a post from someone we will call G who was posting about maybe beginning to use a wheelchair for the first time. G was asking what it was like to make the transition.
I’ll write to you, G, as though I was writing to my former self, just before getting the wheelchair, and the lessons I have learned.
Lesson 1: Your first chair is going to be… imperfect.
Purchasing Firefly was a big step. We visited a little place in Bournemouth, walked out with a basic chair that was deeply wrong for me in a lot of ways. I still loved her like I loved my first car. I had a Toyota Carina, with so many miles on the clock it had the carbon footprint of a private jet. I didn’t know what I wanted from a car and it was only when I had been driving for some time that I started to recognise how problematic she really was. When my car ended her days bent into the shape of an oversized toaster, that’s a story for another time, I had learned what I needed my next car to be.
So the first thing to know is that you are going to make some pretty big mistakes with your first wheelchair. Hire one if you can, maybe get one second hand if not. Don’t spend much money. Firefly lasted me a full year but my body was protesting her design long before I upgraded.
Lesson 2: Starting out you may find you are not as strong as you need to become
When I pushed Firefly for the first time I was hit with a sudden stark realisation of a distance between how strong I would need to be to move this thing and how weak I was. I was so weak that I could remain stationary during a sneeze.
Manual wheelchairs are hard to move. My chairs are generally around 20kg, with Firefly weighing in at 25kg, and with my ass that’s approaching 100kg of weight in total to move with your arms. That isn’t easy to move in the best conditions and you are going to need to become strong enough to become independent, to go to the places you want to visit, and to be confident doing so. Of course, this all leads us nicely to one of the biggest lessons I have learned.
Lesson 3: The world is not built for a wheelchair
Like at all. Not even a little. The sidewalk outside is relatively easy to walk down, and almost impossible to wheel down. Gentle tilts will pull the chair toward the road and force you to work one side over the other, meaning that you’re forcing nearly 100kg uphill with one hand. If that sounds hard, it is only because it is really hard. Look after yourself, stay safe, but what I do is choose quiet roads and wheel in the road. Cars wait for me, drivers are patient and careful around me, but pavements, sidewalks, are truly treacherous.
Pavements in the UK are also full of traps. The problem with wheelchairs is that the front wheels, called cams, are small. This is a good thing generally, it makes it easier to wheelie, which is a godsend for getting over obstacles. It also makes the chair manoeuvrable such that in a good chair you can turn a full 360 on the spot. But small wheels can get stuck really easily. Drains, potholes, roots and branches, small children, pets, wayward badgers, particularly stocky mice, can all be catastrophic. The problem with obstacles isn’t just that they cause problems, but they can stop you instantly and throw you from the chair. I’ve fallen off my chair 3 times in the past year, though I’ve managed to avoid any lingering injuries.
Whenever I fall someone always stops to help and while that is deeply welcome it also brings me to another major lesson I have learned.
Lesson 4: The world will no longer see you the way you see yourself
You must take great care to maintain your sense of self, your self concept, your view of yourself as competent, and your view of your life as worthwhile, as joyous, wonderful, and adventurous. I’m profoundly sorry that the world sees disabled people as suffering, as in pain, in need. Fundamentally, we are seen as tragic in our wheelchairs.
People are a kind of mirror and how they relate to us shows us a version of ourselves shaped by their perception. What I have learned is that the more people act in ways toward us that evidence their view of us as tragic, as pitiful, as suffering, the more their mirrors offer an unrecognisable reflection. The way in which people treat you is shaped by their rules about what a person using a wheelchair should be like. They’ll be uncertain of you, surprised by you, inspired by you, and they’ll police you without even knowing. They’ll expect you to be unable to walk, to be dependent on others for everything, to not have desires, to not be beautiful, sexual. And over time without their reflections of you ever really changing, they will threaten to change how you see yourself.
Be yourself, do the things that remind you of who you are, surround yourself with those who see you, who reflect your authentic self. Notice when you’re starting to feel strange and attend to your self concept. You will change, you will become defiant and…
Lesson 5: You will become stronger
If you're anything like me it's going to be hard to imagine what life would be like using a wheelchair. When you first sit down it can feel demotivating, realising the distance between where you are and where you want to be. Suddenly being faced with how inaccessible the world is and how physically and mentally strong someone needs to become to now navigate it.
But you will become strong. With each challenge overcome, each new problem solved. With each failure and each fall. With each stare, each sympathetic smile, each offer of help declined. With every hill, every curb, every pothole, every freewheel downhill, you will become stronger. Maybe you will become stronger than you ever thought possible.
The biggest lesson I have learned, though, is the answer to a question that underlay all other questions. It was an unspoken deep uncertainty, a fear that maybe I’m not enough, maybe this is too big, too much. That maybe I am what these people see, suffering, tragic. But the greatest lesson I have learned in all my one year wheeling around in wheelchairs is this…