I’m new to Invacare, but not new to disability. I first started experiencing chronic pain when I was around ten years old. Little things at first - it hurt to sit on the floor at assemblies and kneeling at church was torturous. It was originally put down to growing pains, but over the years I collected an assortment of diagnoses that explained what I was going through. From Complex Regional Pain Syndrome to fibromyalgia to Ehlers-Danlos Syndrome. My friends used to joke that people with chronic illnesses should get a ‘Spoonie’ passport with a new stamp at every new diagnosis. 

I’m now 31 and have been using a walking frame to get around for four years, though it’s been a struggle to continue to do so. So, when I applied for NDIS last year, a request for an electric wheelchair was on most of the letters.  

It was bittersweet. On one hand, I wanted easier access to life. Before I started using the walker I’d been stuck at home for months, too tired and sore to go out independently. I feared getting stuck somewhere, being unable to safely get home. My mother was the one who suggested I take my nan’s old walker from when she had her hip replacement. As a result, I started engaging in the world again and even started studying in 2020. But using the walker was getting too hard. I found it hard to self-propel and I couldn’t concentrate on my studies the way I did during lockdown because I was using all my energy just transporting myself to and from campus. 

So, for my second appointment with an OT, we went to a shop to trial out chairs.  

My friend came with me, and we trialled a lot of different pieces of equipment - lift chairs, walkers, and electric wheelchairs. Every new thing I was taken aback - the lift chairs showed me how much pressure I’d been putting on my legs and arms to get myself up. The walkers were all lighter and smoother than what I’d been using. And then we got to the electric wheelchairs... 

I expected to feel anxious. When I started using a walker my invisible disabilities turned visible. I could no longer blend in the way I could before. For someone with anxiety this was hard - I usually hide in dark, baggy clothing so that no one looks at me twice. I also struggled (or more accurately, still struggle) with internalised ableism. Am I really sick enough to use a chair? Am I not taking resources from someone else? Am I making a big to-do about nothing? 

The multiple doctors’ letters and years of struggling still didn’t validate me, at least to myself. But in the moment, I forgot it all. There was this ease I’d never experienced before. I kept twirling in circles as my friend videoed me while we hoped my OT wasn’t watching our juvenile activities. I didn’t realise I could be mobile with this little pain. Suddenly I could imagine this future for myself. I thought of going to plays, out to eat, studying more. All these things that I was always too tired to do.

Leaving was difficult. We hadn’t found my chair, but after the snippet of relief, I’d had it was hard to go home knowing that I wasn’t taking a chair home with me. But this first step, or should I say first wheel? felt like the start of something life-changing. 

Thank you for reading part one in a series Ferris will be doing about their journey to getting an electric wheelchair. Stay tuned for part two.

About the Author:

Ferris Knight is a queer and disabled writer, producer and advocate from Melbourne, Australia represented by Champion Health Agency. Ferris mainly writes about their lived experiences with mental and physical health conditions, as well as queer politics, poetry and fiction. They have also worked with organisations such as Arts Access Victoria, The Dax Centre and Women with Disabilities Victoria. In 2019 they produced their first Melbourne Fringe Festival show LEtGO of Stigma, walking 80 metres across Lego to talk about living with hidden pain and the resilience of those with mental illnesses. In 2020 they were a part of the anthology Closet Cases: Queers on What We Wear from Et Alia Press, writing about sexual harassment.