Sharing Our Knowledge

One of my friends recently had their first ever proper trip outside in a powerchair. They aren't new to disability (like me they are lifelong disabled) but the wheelchair is a recent addition to their life and the powerchair even more so. They sent me an e-mail telling me how well they had done but that they'd had 1 specific issue with it - it hadn't been able to handle a the gradient of a moveable ramp into a restaurant. I've been in that place (although only in my manual) and I think it should have been doable.

So anyway I sent an e-mail back saying "hey, try turning the speed up next time sometimes my chair can handle ramps with more speed that it can't with less" I believe that's something to do with less power to the motors at lower speeds. I'm not good on the technical side of things. The other thing I said was that my specific chair has tilt in space and if I have it tipped back it has a safety mechanism that sometimes kicks in meaning I can't tip the chair going up a ramp and basically it stops me dead until I either start going up a lesser gradient or sit my upright. But obviously I don't know the details of the chair they have. I've not heard back from them yet.

I've been using a powerchair for five years now and I'm sure one of the first things someone told me was if I got stuck on a hill to turn up the speed (although to be honest mine is rarely set below the max now - the amount you push the joystick forward affects the speed too and I prefer to control it that way generally). Certainly when I got this chair with the tilt in space one of the things they made sure I knew was about the safety thing.

It made me think about how much we all know and learn about things that maybe others need to know but aren't told. The thing I said above with the wheelchair was one thing. Certainly there are others which might be because the system doesn't make it clear or we don't know to ask for it or to fight for it. Or because the person we've asked for help isn't sure themselves.

If you were talking to someone who was either new to disability or to a specific treatment or piece of equipment or whatever that is second nature to you, what would you say?

Mine:

If a powerchair can't handle where you want to take it and you think it probably should be able to, try turning the speed up and/or sitting more upright if you can.

Manual wheelchairs can get stuck or be hard to push on rough ground. That's generally due to the castors at the front, try going backwards - much easier!

Always come off the moveable ramps on trains backwards if the staff ask you too. Sometimes even if they don't.

It's ok to be friendly with carers or therapists (or journeycare assistants) or whoever but they are paid to be there to work with or help you and that's there job. Which means generally they shouldn't bit at you about how much they hate their job, dump their problems all over you or otherwise take the piss. In any other job in the world such blatent unprofessionalism would cause problems - so tell them it's a problem if it is and complain if you need to!

I need to add a caveat to that point. Last year I told a carer (who was covering for my regular one) that I had better things to do than wait for her to be bothered to show up. She'd been 45 minutes late and told me she didn't ask for me to be told she was running late as there was "no point.". She then complained to the office about me saying she'd only been 5 minutes late. I was proved to be in the right there. Some years ago when I was at uni I had a carer who again came very late and I had a go at them about it. It turned out I was the one in the wrong about the time there (she'd been told to come at that time and I'd not been told of the change) and the minute I realised that I apologised. That carer also spoke to the agency she worked for about me but also added that whilst I had been upset with her about it i'd apologised as soon as I realised it wasn't her fault.

I think it's important that whilst people who help me as a part of their jobs treat me right I try to do the same for them too where I can.

I do have several very good friends who were originally carers for me or I met through their working for other organisations. It is possible but those people are the ones who never used our friendship to their own advantage when doing their job and who knew the importance of their job to me and my life as much as the friendship. With all of them except one once they stopped being a professional in my life our friendships improved a lot. With the other I met them through their then job but from a professional point of view they didn't have much to do with me so it's no different.