I took yesterday off and persuaded my dad and Fat Sister to do the same. Together we went on a road trip to the Mobility Roadshow in Telford, just north of Birmingham. The Roadshow’s an event devoted to products and innovations for people with mobility difficulties. Although it was a long and tiring day it was exciting and thought-provoking.
The quest for a wheelchair that meets my need for strength and matches my desire for independence has been a recurrent theme of mine recently. I’ve written about the highs of trying power wheels, and the lows of having my frame suddenly snap.
For the last few months I’ve spent every spare moment browsing wheelchairs online and today I was at last able to try out some that’ve been preoccupying my thoughts as well as see others I hadn’t even heard of. Perhaps most importantly I was also able to talk about my circumstances, my needs and my hopes to people with years of experience using and building wheelchairs.
I’m sure that to many people all wheelchairs seem pretty much the same, but in reality there’s a vast array of types and styles, all of which can be tailored to individual needs with their relative risks and benefits carefully balanced.
Last night as I went to sleep my mind was brimming with chairs, conversations and possibilities. I’m going to write about some of these here in the hope that it’ll help me think about and unpick some of the options for me. If you’re not interested in wheelchairs, or bore easily, the rest of this post might not be for you.
Otherwise, here goes:
On the way to Telford I briefed Fat Sister and my dad on my requirements. I need a chair that’s:
Strong enough to withstand the powerful movements of my tics
Stable enough for it not to tip backwards when I have a ‘ticcing fit’
Light and responsive enough for me to move about without anyone needing to push
Supportive for my back
Has push handles for when I can’t propel myself
Able to cope with bumpy, broken London pavements
Tough enough to handle the rough terrain where I work
Strong enough to support and survive my active lifestyle
The International Centre was packed with manufactures, designers, inventors and wheelchair users. Here’s what emerged as the top options for me:
A Custom-Built Chair
There were a number of different companies at the event that make chairs to fit your measurements and specifications. I’d always assumed that the lightweight frames designed for active users would be too dangerous or fragile for me. But having spoken to a few different reps, my resounding feeling was that they could build a chair that had everything I need – set-back wheels, anti-tips, a high back, and strength (whist still being lightweight and easy to push).
To make it really strong the chair could be made of titanium or carbon fibre. Encouragingly, many of these frames come with very long guarantees and everyone I spoke to said, ‘You won’t break it’, even after I explained exactly how forceful my movements during a fit can be.
Custom-built chairs are of course expensive, and because for safety’s sake I’d need the wheels set back, I might still struggle to push myself outdoors over long distances. Also, if I had a chair made for me I’d be entirely responsible for maintaining it. On the other hand, because the chair would be designed to cope with my needs and lifestyle it should be less likely to break than a standard chair.
What became clear from all my conversations was that these companies are used to building chairs that meet diverse needs. No one seemed worried by anything I said I needed and everyone took great delight in showing me what their chairs could offer.
At the first stand I went to I transferred out of my bulky, noisy courtesy chair into the test chair the rep thought was most suitable for me. Like many of the other people I spoke to, the rep was a wheelchair user himself and he grinned as I happily moved myself around the stand. He said, ‘The favourite part of my job is watching when someone goes from being in a chair like that (pointing at the courtesy chair) to using one like this.’
An All-Terrain Chair
Because I work at an adventure playground and spend a lot of time outdoors negotiating uneven ground, and because lots of the pavements in London are in poor condition, I thought that a chair designed for rough terrain might be worth considering.
The chair that I’d seen online was a Mountain Trike and I was keen to try one out. But although the chair was very clever, it quickly became clear that it wouldn’t work for me. It’s operated using a lever system and one of these levers controls the steering. Although I could operate it OK, every time my hand ticced on the steering lever the chair veered off to the side. I was glad to have been able to try it out though and establish that it wasn’t for me.
But there’s another all-terrain chair which seems like a much more suitable option – it’s called a Trekinetic and I’ve never sat in a chair that’s felt safer. Unlike most wheelchairs it has the two big wheels at the front, and no little wheels at all. There’s a third wheel at the back that means it can’t tip backwards. This layout supposedly means it’s the big wheels that hit any bump in the ground first, making the chair a lot less likely to get stuck in the way conventional chairs do. Most important for me, it also means the wheels are in the optimum position for pushing, without making it dangerous.
The chair’s seat is made of moulded carbon fibre and it’s very comfy and strong. I felt incredibly at home in it, and of all the chairs I tested this was the one I was most reluctant to leave. Because I felt secure I was able to push faster and move around much more freely than I have in a long time. I even went up a fairly steep ramp. Fat Sister said ‘I didn’t feel at all worried about you whizzing about on you own, I could see that you were safe.’
This chair can also have push handles and these seemed much better than on a usual chair because they were at a decent height – making it possible for someone to push the chair with one hand while walking next to me. It was a very stylish chair, although it does bear a passing resemblance to a high-end baby buggy.
The biggest potential drawback of this chair is its width – it’s only slightly narrower than a standard door and I think it could be quite tight in some places. It does collapse down quite small, although maybe not quite as small as my current chair. I’d be very keen to see how it would cope at work and with going up and down kerbs.
Power Assisted Wheels
I’ve written about power-assisted wheels before. They remain a good option and I saw lots of people using them at the Roadshow. But I realise now I’d only need them if I were using a chair which I couldn’t propel myself. Today I found a number of chairs that I could move about in easily, with no loss of safety.
I’m sure in the coming days, weeks and months I’ll be thinking and talking about these options a lot more. These are expensive pieces of kit, but they’re potentially life-changing, and even though I want more independent mobility immediately, I’m not going to make any rushed decisions.
Another significant area for me to explore relates to finance. Lots of exhibitors suggested I speak to Access to Work who apparently often fund (or part-fund) wheelchairs if they relate to someone’s job. I described in my post the other day how using the courtesy chair was reducing my ability to do my job, and yesterday I tried some models that could hugely expand what I’m able to do at work.
I’m really glad I went to the Roadshow and hugely appreciate Fat Sister and my dad taking the day off to make it possible. Leftwing Idiot’s at Glastonbury this weekend with Poppy – I can’t wait ‘till they’re back so I can start filling them in (or boring them stiff) with all my mobility news.