(image by Romain Virtuel)

Am I leaning into the fact that every title has been different because of brain fog? Absolutely. Did I initially miscount, so made a 5ive joke which no longer works? Kinda. Maybe. Definitely.

I thought we were near the end of this journey. I felt comfortable going out with support workers as well as independently with the chair. I’d even made significant – not steps, but wheels – towards conquering fears of getting on trains and in elevators, both of which had reduced me to tears early on. Still afraid of buses, but we’re all works in progress.

Unfortunately, I’d forgotten one very important step – actually picking out the wheelchair. For some reason, I thought I’d automatically just get the same as what I was renting since it had served me well. Fortunately or unfortunately, depending on your circumstances, what is available for rent isn’t always what is available for purchase. This means that you almost start all over again.

We had two main criteria – electric and foldable. I cannot drive, so it needed to be able to be compact so I could be in cars with family, friends and support workers alike. Those in electric chairs will know this already, but for those of you without one, this means the battery is less powerful and will not go as fast or as far as a more standard electric chair. Wheelchairs can also be extremely heavy. I have something known as a boot slider though, which means when you collapse the chair it helps you put it into the boot with less weight on it. They’re so brilliant that we have two – one lives with me and one lives with my mum (NDIS paid for one, and we organised the other privately). They should hire me as an ambassador for how often I plug them.

On the day of the first trials, my mum, OT, and the sales associate were there. Since I’d moved house last year we had a new associate I hadn’t met before. He pulled out three chairs, reminding me of feeling like I was on The Bachelor. I tried two and then finally tried number three, which Mum instantly called ‘Zippy’. Zippy was fast, intuitive, and had an incredibly tight turning circle (fantastic to know for situations like lifts and trains). It was so comfortable that it felt like an instant ‘yes’, but that’s when the sales associate (and I didn’t know this until this far into the appointment but he’d been working there for two weeks) interjected that it couldn’t go on the road. He said it was perfectly fine for at home, or maybe a shopping centre. He was convinced the chair I was renting also couldn’t go on the road. Perhaps just out of frustration, I tested it crossing the road to see how it went with the lip in the sidewalk. It was absolutely fine. Dejected but determined, we organised to try and rent Zippy for a week so I could prove it could cross the street so I wasn’t trapped in just my own block.

Trying to forget how frustrated I was, the second trial snuck up on me. We had the same sales associate, who had now worked there four weeks. I was quite anxious but shouldn’t have been – he took what we all said to heart and saw a new wheelchair was coming in and brought it along. Not only was he convinced this one could actually go on roads, it was almost as intuitive as Zippy and much more comfortable, with better speeds, battery life, and the option to remove the battery entirely and replace it. Before mum could get in and name this chair I christened it Yoshi, the character I always play in Mario Kart. If you know where I could get a blue shell to throw at people please comment below. He brought Zippy too to compare, and the only downside was the turning circle – if I didn’t think about it Yoshi turned brilliantly, but if I tried it was a bit clunkier due to a different style joystick, something of which I’d get used to quickly.

Now comes the long and boring part – waiting to see if and what NDIS will fund. Renting a chair is quite quick, but I’ve been warned to wait between six and nine months if I’m lucky. Because of the timing we may need to do a whole new plan, and since we’re adding a secondary disability it means every medical and allied health professional I see will need to rewrite all their documents all over again before I see Yoshi again.
Hopefully I’ll be back sooner rather than later for what I expect will be the last chapter of this journey, but with NDIS I guess we never know. Until then, I wish you a day full of spoons.

This blog is the 6th instalment in Ferris' series Journey to a Wheelchair. You can read their other blogs in the series here: https://www.invacare.com.au/search/node/journey%20to%20a%20wheelchair

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.