I expect to be treated differently depending on which wheelchair I am using
It’s a common misconception that having a disability as a kid equates to a miserable childhood.
I can categorically state that this wasn’t true for me. In fact, I loved my uniqueness and the experiences I had growing up.
I loved the excitement of going into hospital, eating ice-cream, jelly, and mac cheese – something my mum never cooked for tea.
Meeting other kids on the ward from across the country, with different accents and ethnicities was exciting for a kid from a small Lancashire town.
Everything felt like an adventure rather than a burden or tragedy, and that was no different when I got my first wheelchair. I mean what six-year-old gets to choose their very own bespoke Lamborghini of wheelchairs?
I remember the chair being dropped off; it was a summer’s day and my whole family piled into the garden. There in the middle of the patio sat my pink manual wheelchair. I’d chosen the colour myself; it wasn’t a Barbie pink rather a blush pastel. I was smitten.
A year or so later I received a power wheelchair for school.
It was bright red with a dark brown faux sheep fur covering the seat. It swamped me and it felt like I was being hugged by a teddy bear every time I sat down.
But as I grew older and became more self-conscious, my attitude and outlook towards my wheelchairs changed. I wanted my chairs to be invisible. Minimal. I didn’t want to draw attention to myself. Like most teens, I felt body conscious.
So as I progressed through school, my manual and powerchairs became more plain.
Until high school, I used both chairs interchangeably before I grew out of them.
However, when I left, I decided I wanted to be a full-time manual chair user as I felt embarrassed in my power chair. It was noisy and clunky, receiving plenty of unsolicited comments from peers and strangers, including: ‘Watch my toes’, ‘Beep Beep!’ or ‘Have you got a licence for that?’ All I wanted was to be invisible.
Now, in my 30s, my priorities have changed dramatically. I care less about others, but instead about what’s best for me, my independence, health and mental wellbeing. I’m back to using both chairs and, in doing so, I’m alarmed at what I’ve experienced
Mostly, I feel liberated and free in my power chair as I need assistance when I’m using my manual.
I don’t have the upper body strength to sustain pushing my manual chair for long distances and poorly constructed pavements with no drop curbs make it impossible for me to go and grab a pint of milk alone.
I sacrifice some of my autonomy in my manual, yet I find it fits into society more ‘neatly’. In restaurants, down shop aisles, on public transport, taxis – I’ve even had taxi drivers say they prefer manual chairs as powerchairs damage their ramps.
Manual chairs seem to be more socially acceptable. They take up less space and that seems more appealing to the non-disabled world.
I don’t always want or have someone accompanying me, so this is where my power chair comes in. Except, I am physically more excluded from buildings with my power chair.
You see, when I’m out and about in my manual chair with friends and we turn up to a bar that has a couple of steps, they can simply carry me up the stairs.
Although it’s not ideal, and I’d rather live in a world that met all of my access needs, it’s undoubtedly a quick fix. This is absolutely not possible with my incredibly heavy power chair. In this situation I have to forgo entry and find somewhere else.
It’s not only frustrating, and embarrassing, but a blatant breach of my civil rights being denied access to a building.
There is also a notable disproportionated financial cost between the two. Wheelchairs in general cost a substantial amount of money. Contrary to popular belief, us disabled folk don’t just get them handed to us like penny sweets.
My manual chair cost £4,500 and my power chair, which was generously fundraised by the charity Brittle Bone Society, cost over £9,000.
I feel sexier and much more confident in my manual chair. This is my internalised ableism talking. For starters, at 3ft tall powerchairs, no matter how well designed and slimline, drown me.
The main appeal of a manual chair personally has been because of their ability to showcase me, rather than the chair. I guess I don’t want people to make assumptions, or negative stereotypes about me and my disability.
It can be a constant battle to negate the harmful stereotypes that are synonymous with disability, for example, that we are not sexual; or that we are less intelligent, and incapable. These stereotypes are also accentuated in each chair.
I tend to have people stare more at me in my powerchair, perhaps because I’m often out and about on my own (because disabled people can’t leave without a minder, right?!) or assume I’m unable to talk, and in need of ‘help’.
In my manual chair I’m often overlooked and patronised, people pat me on my head, and I receive unsolicited touching. Complete strangers physically grab my manual chair to move me out of the way, at checkouts, in restaurants and in bars.
My manual chair seems to be an inanimate object to most, not a tool of empowerment and liberation like the way I see it. I am a wheelchair user, not bound.
The bottom line is that disabled people shouldn’t have to compromise their independence, their choice or freedom of movement depending on what wheelchair they use.
We should live in a world where barriers are removed and we strive for a more inclusive society, with inclusive design. In many ways I feel privileged to have both chairs and in the same breath feel frustrated by each of my limitations associated with them.
Wheelchair privilege is alive and well, and only through sharing our lived experiences can we expose and call out disability discrimination and the inequalities we face everyday.