Don’t ever call me ‘wheelchair bound’. My wheelchair doesn’t bind me — it liberates me
The wheelchair represents many different things, depending on the beholder’s personal experience. Many is the time I have been acutely aware that my wheelchair makes me the living embodiment of that blue symbol that adorns bathrooms and parking spaces.
I hadn’t really given wheelchairs much thought myself, until 13 years ago when I fell from a tree and sustained a spinal cord injury (SCI), causing instant and permanent paraplegia.
For the first couple of weeks, coherent thought was stifled by a combination of excruciating pain and morphine, but I remember the day I was transferred to the National Spinal Injuries Centre at Stoke Mandeville in the United Kingdom. As I was wheeled in on a gurney I looked up to see a man in a wheelchair going past under his own steam. In that moment, the wheelchair represented freedom of movement.
Drug withdrawal and the full reality of my situation led me to anxiety and near despair before I was finally able to face my first “go” in a wheelchair. When it came, my first response was to pass out as all the blood left my head. But it wasn’t long before I was able to wheel myself outside and feel the sun on my face, which was a moment of profound joy.
However, the following day, I was transferred into the wheelchair again and felt only crushing disappointment. It was like learning to ride a bicycle, only to realise that I would have to stay on that bike every day for the rest of my life.
But the cycling analogy worked well for me in other ways. I was a keen mountain biker before my SCI, which offered me a way of reframing the significance of the wheelchair, or perhaps ignoring my new reality. I noticed that all wheelchairs are not the same, which led to an obsessive tinkering habit that persists to this day. It’s as if I am trying to solve an enormous engineering puzzle, searching for the perfect combination of components which, when arranged in the perfect configuration, will result in my return to a life of full and effortless mobility.
Both the wheelchair and the bicycle are mobility devices that take some time to master, and both afford the user different abilities depending on skill, technique and practice. I was taught wheelchair skills by some volunteers from the Back-Up Trust, a UK SCI charity. The experience had such a profound effect on me that I eventually became a wheelchair skills trainer myself.
Upon leaving hospital, I discovered a world ill-suited to the wheelchair. Uneven paving on footpaths, broken glass, chewing gum, anything that needed to be stepped over, disabled bathrooms that doubled as locker rooms and storage for cleaning equipment, narrow doorways, bathroom doors that opened inward, stairs, ramps that are too steep … I could go on.
Over time, I learned to master back wheel balancing over gravel, bouncing up kerbs as well as dropping off them, and even going down stairs. I began with an intrepid attitude, but I soon tired of “making do”. It was exhausting and made many experiences feel like a consolation. Now, if I’m visiting friends I’ll go upstairs on my backside if I have to. But if I’m going out to a bar or restaurant, I won’t patronise places that don’t provide proper access.
I can overcome a single step relatively easily, but when a new development has a step into each shop (as is the case with a new building near me), then I will lodge a complaint. I’ve done “making do”. Now I want things made right in the first place, no excuses. Especially as equity of access is enshrined in federal law, even if it is hardly enforced.
My current wheelchair is pretty much perfect for me. Made from titanium, it has no adjustability whatsoever. This means it’s lighter and there are fewer parts to tighten as part of the maintenance regime. The front casters roll on fully ceramic bearing sets, which prevents them from rusting on the frequent occasions that my wheelchair ends up in the ocean. The ceramic bearings also reduce resistance and eliminate the build-up of hair around the casters, the removal of which is a disgusting job — ask any wheelchair user.
Whenever I fly, the sight of my wheelchair being wheeled away as I am transferred via a narrow aisle chair into my airline seat always fills me with anxiety. I have lost count of the number of friends whose wheelchairs have been broken or lost by airlines. People who don’t rely on a wheelchair often see this as an inconvenience, like losing a suitcase. Imagine instead that you arrive at your destination, only to find that someone has amputated your legs during the flight (not sure how you wouldn’t notice, but it’s the best analogy I can come up with). A wheelchair is never just luggage.
As with cycling obsessives and their bikes, I have more than one chair. At the last count I have five, including one for basketball and one for tennis.
I have come to appreciate my wheelchair as an empowering tool that enables me to live a full and active life, so don’t ever call me “wheelchair bound”. My wheelchair doesn’t bind me — it liberates me, and for that I love it.
By Tim Rushby-Smith
Tim Rushby-Smith is a journalist and author.
— Guardian News & Media Ltd