The movie Wall-E doesn’t paint a great picture of people using wheeled devices to move around. In fact, it sort of suggests that wheelchair usage – especially from power wheelchairs – is just a great way for people to get fatter and lazier than they already are.
Unfortunately, the confusion about wheelchair usage isn’t limited just to Wall-E’s creators. Many people seem to think that wheelchairs are an impediment to people’s lives – they focus on all of the things that you “can’t” do in a wheelchair, but in the process they miss out on all of the wonderful things a wheelchair enables you to do when you need it!
Because of this, folks like me – who struggled for years with pain issues, fatigue, weakness and exercise intolerance – think that the most important thing we can do is to avoid getting a wheelchair. And when we go to talk to our health care providers, it is very unlikely that they will recommend that we get a wheelchair either.
I admit that the problem is complex. I understand that the more we sit down as humans, the greater issues we will have with bone density, tight tendons, weakening muscles, etc. But here’s the problem. When your disabilities are great enough to leave you stuck on a couch or in a bed, that causes the same problems while introducing a whole host of other problems: like an inability to get outside, to socialise, to hold down a job, to parent your children or invest in your partnering relationship or friendships. In other words, it introduces all sorts of mental health and relational health and financial health problems. So why not trust that in our structurally able-body designed world people will naturally be forced to stand/walk as much as they are able, and that having a wheeled device to use whenever they CAN’T do that is a net positive to their quality of life?
Which brings up the second problem: the world is challenging to navigate from a chair. I’m not going to lie and pretend that’s not the case. I live in Canada, in a city with paratransit and incredibly accessible general transit, and I frequently run into challenges navigating my spaces. But the answer to this problem isn’t to offer fewer wheelchairs to people who need them. The answer is to increase our awareness of the issues that are currently unquestioned in our structural approaches. And we do this by increasing visibility, not hiding from our need for a chair. In my experience, when I show up in spaces people quickly become aware of the issues in their spaces, and often respond with surprise and shock that the structures that pose barriers to me even exist. They say things like, “you’d think they would have thought of that” and other similar comments. And then – amazingly – they often move to make the accommodations that were needed.
Finally the experience problem. Most people’s experiences with wheelchairs involve only the hospital-grade, one-size-fits-no one, good-luck-if-you-can-independently-push-it chairs. If that’s the only experience you’ve had, then I can guarantee you that your wheelchair – however needed – had an unnecessarily disabling impact on you. Good wheelchair design exists, but it is not celebrated in your average hospital or drug store chair. A custom fitted, disability-specific wheelchair makes all the difference in the world. Matching your chair up with your unique needs – including activity level, physical issues, home set up and transportation reality – is crucial to your ability to use a chair well.
So how do you know when it’s time to start asking for a wheelchair? I would say you know when you start looking longingly at them. When sitting down not only feels better, but feels like the only way to cope or function or string a sentence together. When you find yourself regularly missing out on events and experiences you love with people you love because you simply CAN’T get out of bed. You know when the cost of pretending is having to spend more time in recovery than you did on the activity. And you know when this has become not just your once in a while reality, but is a frequent occurrence.
Talk to your doctor. Talk to an occupational or physiotherapist. And if you’re still feeling nervous about how people will view you or how you will navigate the world, send me a message. Let’s talk. Remember that wheelchairs are often powered by love!
Heather R. Morgan 