I went to see my newly born niece for the first time and 2 year old nephew (and my brother and sister-in-law too) over the weekend, but I’d just been in hospital earlier in the week. Normally, I would have cancelled the trip, but my niece has had quite a dramatic entrance into the world, arriving 11 weeks early, and is already over a month old and in a special care unit. I was determined to go see her! Which meant taking things very easy and using my wheelchair when out and about.
I don’t really like the wheelchair. Someone has to push me, so I can’t choose where I’m going or looking. And my mum also has a habit of letting go of it without putting the brakes on, making it roll backwards or forwards with me still in it! Other people either make huge efforts to get out of the way or they ignore you completely and talk to whoever is pushing you- there doesn’t seem to be an in between. I can physically walk, but I can’t walk far without feeling ill, but people don’t get that and give me weird looks when I get out of the chair. Anyway, I digress. I like the wheelchair because it means I can still be involved, but I don’t like it, if that makes sense.
My niece obviously doesn’t care because she’s a baby. But my nephew is at the ‘what’s that?’ And ‘why?’ stage, and he’s never seen his auntie use a wheelchair before. He looked at it a bit confused for all of about 9 seconds, but then that’s how he looks at me in general whenever we see him for the first time in a while. Then he got over it and moved on.
Here’s the thing, adults don’t know how to adapt. Some crouch to your level, some talk over your head and ignore you. Others talk to you like you’re a child or you don’t understand English. People say things like ‘it’s good you can do X considering you’re in a wheelchair’. Lots dont even say the word ‘wheelchair’ they just gesture at it and miss it out, like it’s something to be embarrassed about. It tends to be adults who know someone with a disability who are able to manage to maintain a ‘normal’ attitude towards it. Even well intentioned people or people I know reasonably well still feel and act a bit awkward around it.
My nephew, on the other hand, saw his Auntie ‘Bell’ (that’s what he calls me). And that was it. He wanted to play with his yellow ball, but he wanted to include me too when it was my turn, so he brought it to me or kicked it to the front of the chair so I could kick it back. When I got out briefly and played for a few minutes at a time, he went with it, and then didn’t moan when I sat back down and I changed the ‘rules’ again. (He’s also at that stage where he has a very clear idea of what the rules of his game are but can’t quite communicate them). At one point, he wanted me to get and look after his ball while he did something else. So he turned to my husband and said ‘get Bell please’, meaning, ‘go get her in her chair so she can come here and look after my ball and watch me’. He’s only 2, but he made me feel a lot more included in life than a lot of adults do. Even more so when you think that we were playing, which is something that can be quite physically challenging and potentially complicated to adapt to be disabled friendly. I didn’t feel I had to put on a show for him and pretend to be ‘normal’, I got to play with him on my terms without being made to feel bad or awkward about it. He was very adamant that others gave me my turn with the ball as well, just like he was with everyone else.
So if a 2 year old who hasn’t had many if any interactions with a disabled person in a wheelchair can ‘get it’ and make accommodations really easily, why can’t adults? Maybe it’s a fear of saying something wrong or they can’t think creatively or just general panic. I don’t know. But some things in general I really appreciate when out and about are:
- Talking to me rather than (or as well as) the person I’m with.
- If you’re not sure what I can and can’t manage, ask me. I’d rather be asked than have assumptions made.
- I don’t mind people helping me, but it has to actually be helpful. I have ways of doing things so sometimes people’s ‘help’ actually makes it harder. Ask me.
- Don’t just randomly move me. It’s essentially kidnapping! If you wouldn’t just move a pushchair, don’t move me.
- Avoid Jesus or miracle jokes if I get up and walk for a bit 😉 it’s not funny hearing the same joke over and over, nor is it miraculous. Children have pushchairs for when they get tired, I have my wheelchair- it’s the same.
- I usually plan out routes or check out accessibility on days I know I’m going to use my wheelchair. So I might ask questions beforehand. If plans change, it’s helpful to me if I’m warned so I can rethink or make it so that I can still be involved but not annoy other people as well 🙂 If you suddenly want to climb a mountain as part of our day out (extreme I know), I’d bring a book and sit in a cafe instead while you did that, for example, rather than trying to get my husband or friends to push me up a hill!
There are lots of barriers that sadly do exist, even though they shouldn’t, to moving around in a wheelchair. But interactions with other human beings shouldn’t be one of those. 🙂