Walking has many benefits. There are the health benefits to do with bone density, cardiovascular health, and muscle strength. There are the accessibility benefits of not being entirely dependent on a wheelchair. There are the social benefits that come from the negative assumptions made about wheelchair-users. Perhaps this is why it is inconceivable to many when I say that not being able to walk very far is the least of my concerns.
Some people might misinterpret this as laziness, or simply not wanting to walk. This is false; I never said I didn’t want to walk. In fact, it would actually be quite nice to be able to move free of pain, fatigue, and nausea. I simply said that it was not one of my top priorities.
Using a wheelchair has of course had a major impact on my life. Every trip outside has to be carefully planned to avoid certain obstacles, and I run the risk of being unable to enter my destination even after careful research. It came as a shock to people when I graduated, and I’m often mistaken for a patient at work. I’ve been kicked, spat on, and called slurs in public. I’m also not trapped in my own home (outside of a pandemic, anyway).
As big as an impact as it has had, using a wheelchair has not shaped my existence as much as chronic pain and fatigue have. On a day-to-day basis, it is my pain levels that determine what I am capable of, not my wheelchair. It is fatigue that has sent me home from work unable to function, & all my wheelchair did was carry me there. In fact, if I was made to walk everywhere, I would have a far less fulfilling life than if I just used a wheelchair.
However, when it comes to healthcare, the professionals I meet seem to fixate upon the wheelchair. My personal theory is that, because I have an invisible illness that they can’t see, they focus on fixing what they can see instead – the wheelchair. Seemingly every health goal is centred around how far I can walk, and when I’m asked about what benefits I want to get from a treatment, my preference for comfort and pain relief is over-shadowed by their obsession with my wheelchair. Of course, were my pain levels to be brought better under control, I would be able to walk further and need the wheelchair less, and I’ve even used this fact as a bargaining chip when working with medics in the past.
Thus, we come to a paradox:
The world fixates on a symptom of the problem (using a wheelchair) and is reluctant to address the root of the issue (pain and fatigue) until the symptom is resolved. Yet, were the root of the issue to be addressed, the symptom would also be dealt with.
Instead of working against disabled people, the world needs to listen to us. Instead of telling us we need to get up and walk, we need access to healthcare professionals that listen to us. The vast majority of wheelchair users view their noble steed as their freedom, not their jailor. It’s time the rest of the world joins us in the view that being unable to walk is not the real problem, but being left in crippling pain is.