After I became unwell with my chronic illness, I put off using a wheelchair for a long time. I thought that they were only ‘allowed’ in certain cases and for certain people, and that I wasn’t one of them. Because of the way mobility aids are typically portrayed in the media, I naively assumed they should only ever be a last resort, a worst-case scenario, viewed as an absolute tragedy. I couldn’t have been more wrong.
Using a wheelchair has given me my life back. Chronic illness made my world smaller, but my mobility aids have made it much bigger than it ever could have been otherwise. I was insecure at first, but my wheelchair allows me to do more of the things I love, with less detriment to my health. Having that realisation has been so empowering.
But here’s the thing. I don’t use a wheelchair every time I leave the house. I can still walk and stand for up to a certain length of time, and I can still move my legs freely. I no longer feel ashamed of that, or as though I need to hide it for my illness experience to be valid. My mobility aids are a tool that I use to enhance my life, when and how I choose to do so. And for me, that’s the essence of being an ambulatory wheelchair user.
What is an ambulatory wheelchair user?
An ambulatory wheelchair user is somebody who uses a wheelchair sometimes, but not all the time. They may have some ability to stand and walk, and this can vary greatly between individuals, but they may use mobility aids as a tool to help them manage their symptoms or enable them to do more of the things they want to do. Using mobility aids and being seated may help to avoid unwanted events such as fainting or seizures, for example, or reduce the amount of pain or exertion required to get through the day.
In my view, ambulatory wheelchair users are those who make the most sensible and compassionate decision for themselves, based on the knowledge they have of their condition and environment. And if that person identifies as disabled, they are still disabled regardless of whether or not they’re using a wheelchair or other mobility aids on that day.
What *isn’t* an ambulatory wheelchair user?
So that’s what an ambulatory wheelchair user is. How about what an ambulatory wheelchair user is not? An ambulatory wheelchair user is not somebody who is lazy. They are not somebody who has given up or isn’t trying hard enough to help themselves. They are not somebody who’s a hypochondriac or wanting their illness or disability to seem more serious. And they are not somebody who wants to be confronted with unsolicited advice or assumptions any time they leave the house.
There are much better ways to be a disability ally than to attempt to give somebody advice or opinions they haven’t asked for. If you’re a non-disabled person and take one thing away from this post, let that be it.
Energy Limiting Conditions and use of mobility aids
Lived experiences of being a wheelchair user are so unique, especially for people with different disabilities and illness severities. It would be impossible for just one person to speak for everybody, but in this YouTube video I share some of my experiences of being an ambulatory wheelchair user as somebody with an energy-limiting condition, alongside the debacle that’s come about partially in response to the wonderful Kate Stanforth’s performance on The Last Leg.
There’s also a bit of chatter about how the impact of mobility aids can reduce post-exertional malaise (or ‘payback’ from over-exertion), the sometimes surprising reactions from other disabled people, and the changes I’d most like to see in the world around us.
You can watch the video below, or on my YouTube channel!
Are you an ambulatory wheelchair user? What do you wish people knew?