Monday, 30 January 2012
The Meaning of Wheelchair User #wheelchair #language #disability #disability #CP
I've been thinking for a while that there needs to be a different term to wheelchair user.
I spend 99% of my waking hours in my wheelchair. I can stand to transfer but I need to get my chair right by the bed or the loo or whatever. The thing I'm transferring to needs to be the right height and also stable. In the bathroom I have to have grab rails and with them I can take a couple of steps. If I stay in a hotel I have to a room with a wheel in / level access shower.
That's what I mean when I say "I'm a wheelchair user"
Other people who use wheelchairs have a lot more mobility than me. Need to get up a couple of steps? It's a struggle but it's doable. Or they can use a normal toilet if they can get their chair outside the door. Perhaps the offer of a ground floor hotel room is all they're looking for.
And of course there's a whole spectrum of wheelchair users beyond and in between my own level and that of my hypothetical wheelie.
The thing is though it feels like lately I keep being told "we have wheelchair access" or "we're used to dealing with wheelchair users". And then whether I turn up there, or we're just chatting and it comes up or I ask pointed questions the truth comes out.
They might have wheelchair access but not for a wheelie who can't manage in the ladies? A wheelie like me. They don't have the access I need. But it's ok. Because they have "wheelchair access."
This NHS support group thing I might be joining, the staff say they have a lot of wheelchair users. They're used to dealing with them. It felt to me like they were making a big deal of that. Then when I went to meet one of the staff members. And the majority of their wheelchair users? Struggle with distance but can still stand and walk a bit - we're talking that level of mobility.
The staff are used to that sort of wheelchair user. I've already been told that in what I consider a big part of the programme, they can't accommodate my level of ability. They've made a plan to do something else but I can try the regular thing if I want.
Then there's the accessible hotel room where I get grab rails - and a bath. Despite having told them I had to have a shower. No good wash for me then. Interestingly that hotel had 13 "accessible" rooms - and only 1 had an adapted shower.
I understand that we're a huge spectrum of ability and need and we're all different. I value that and I'm not suggesting that any one type of wheelchair user is better than the other.
But I am getting very frustrated and a little bit sick of hearing hype about wheelchair access and then finding that it's not suitable for someone as disabled as me.
So I've been thinking that there needs to be different terms to wheelchair user. One that a wheelie with some out of chair mobility can use to ask for the facilities/access they need. A slightly different one that I can use that people understand means I'm an "all wheelchair, all the time" sort of wheelie and that's the level of access I need.
After a couple of weeks of thought however I've not come up with any new terms.