Wheelie Big Announcement

I’ve been a full-time wheelchair user for 3 years this May.

In that time I’ve been bounced back & forth, left waiting, & have continually fallen through the cracks of the WA Health system.

My neurologist & neurological physiotherapist both instructed me to use a wheelchair.

However, my diagnosing hospital don’t do wheelchair scripts… & also won’t refer for them either, regardless of the patients’ needs. The neurological team who treat me have been trying their hardest to sort out National Disability Insurance Scheme (NDIS) funding while also trying to get me into an Occupational Therapist (OT) as a private patient (as a whichever happens first will do). After 3 years of being told, “We have no capacity for new patients,” & “We know you’re a low income earner & would feel awful charging you the same rates as NDIS funded patients but are required to by law, so we do not want to take you on,” by OT businesses, we were getting beyond frustrated & starting to give up.

My current chair is a generic “hospital” chair. It’s 13 years old (almost double the age you’re supposed to retire them), & is broken because my ex was in the habit of throwing it. It has a twisted chassis (frame), shock cord (elastic rope) instead of footplates, broken brakes, the right push rim keeps detaching, the anti-tip bars are missing, & the seat is disintegrating. My body is being caused damage because the seat is the wrong angle, the backrest is the wrong angle & height, & the wheels are the wrong size, amongst other things.

Dragancaor, a white non binary femme person with green eyes & long blue hair, sits in their wheelchair at night under pretty lights. Their hair is pulled up in a clip & they are wearing glasses, a black jumper, black jeans, & black boots with spikes.
a photograph of Dragancaor's broken wheelchair.

But finally, through my neuro-psych calling in a personal favour, we got a space with a small OT company who turned out to be the perfect fit for my conditions (both neuro & muscular skeletal). On top of that, the OT herself & I immediately clicked. Having your treating specialists understand you is such a powerful & freeing thing, & it makes the world of difference.

We double checked our funding budget & then booked a wheelchair fitting appointment, with my OT & neuro nurse, at a showroom where we could try physically try out different fits & frames. The appointment was 3 hours long & cost $700, & between them the OT & wheelchair tech answered so many questions I had about my needs, & also some I didn’t know to ask.

Things that matter in a wheelchair user’s script:

Manual, manual with power-assist, or 100% powered

Frame –

  • Rigid or folding.
  • If rigid, open or closed frame (position & number of bars in the undercarriage).
  • Composition: steel, aluminium, carbon fibre, or titanium
  • Is the user independent or dependant for movement

Sitting position –

  • angle from hips to knees,
  • angle of knees to ankle,
  • angle of hips to shoulders
  • width of distance between feet
  • distance from shoulder to pushrim

Back rest –

  • Height of backrest (waist, shoulder, neck & head needs)
  • Support requirements.
  • Handle type: permanent, folding, telescopic, or no handles? (How often will a second person assist your movement & how tall are they?)

Seat –

  • how much time per day is spent in the chair,
  • are pressure sores a risk,
  • what support is needed

Back Wheels –

  • Spokes (like a bicycle) or mags
  • Is the user independent or dependant for movement
  • Size (this affects shoulder & wrist position)
  • Push rim (hand holds) composition: aluminium, steel, carbon fibre, wood, silicon coated
  • Push rim (hand holds) shape: round or oval

Back Tyres – pneumatic, solid, or flat free. This choice heavily impacts the overall chair weight & ease of movement.

Casters (front wheels) –

  • size,
  • shape,
  • soft/hard composition,
  • position from chair (in front, in line, or frogged outwards).

Weight – the weight of a frame & its fitout adds to the weight of yourself (& your bag) that you are moving, as well as lifting the chair when you aren’t in it. The parts that affect this most are the material & style of the frame & wheels.

That’s not even all of it.

a photograph of two wheelchairs side by side. On the left is a custom carbon fibre rigid frame wheelchair, on the right is Dragancaor's broken steel folding frame generic wheelchair.
On the left is a custom carbon fibre, rigid frame wheelchair, on the right is Dragancaor’s broken, steel folding frame, generic wheelchair. Both are designed for someone who is the size of Dragancaor.

You can see why it’s not as simple as going, “Ah I can’t walk & need a wheelchair, I’ll just order one.”

As you can see in this video of me using my generic ‘hospital’ chair at PAX Aus last year, the height of the backrest & placement of the handles affects my shoulder movement. I’ve torn my rotator cuff (shoulder) twice because of my current chair.

Other injuries include a head, neck, & shoulder injury from the chair tipping over, & countless times that my front castors have run over my feet because of their placement. I don’t have foot plates in my chair (not by choice) & instead have shock cord to hold my feet off the ground… & because the front castors are too big that doesn’t end well. I’ve also broken my left hand because of the frame.

Despite this, it’s taken 3 years of pushing, fighting, & hardcore advocating by me & my specialists to get to the point of having a fitted wheelchair script.

But we did it. I now know what I need.

And after an hour of sitting comfortably in the draft chair we built in the appointment, I changed back to my current chair… & the pain increase was immediate. My pain level had almost halved in the proposed wheelchair. The posture caused by the seat & leg angle puts so much pressure on my lumbar region. My OT & my physio are both extremely excited & hopeful that I will need far less physio once I change to the purpose-built wheelchair, & that I can potentially start retraining my muscle tone & strength.

Achievement Unlocked – Fitted Wheelchair script!!

We were sailing on cloud 9 for a hot minute before the universe threw us another curve ball.

The funding we’d confirmed I had before making the appointment? On Wednesday, at the very end of the appointment, we found out it was significantly decreased. Then on Thursday that changed to I no longer had funding at all.

It felt like the floor had been pulled out from under me.

I was devastated & had no idea what to do.

This story continues here

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