I'm disabled and a wheelchair user, AMA

[disabilityama]

As above.
People often seem to be curious.

Bump for any more questions bc my symptoms are bad today and I'm bored in bed

Do you like the new slimline mobility scooters? I’m thinking of getting one when my walking declines further.

You forgot to mention shops who helpfully make aisles narrower by placing stock displays in the middle / edge (Card Factory and the strategically placed boxes of wrapping paper!)

Not sure what you mean, sorry! I had a lightweight folding mobility scooter and it was okay, but tbh I prefer my wheelchair. It's less likely to tip over, and I don't have to hold my arms out in front of me as it's controlled by a joystick at the end of the armrest. If it's those little three wheeled things, I think I'd struggle with the lack of back support myself, but obviously it depends on the person.

Any tips on choosing an electric chair? And did you buy it yourself or did you get funding?

I am thinking about one but they are so expensive! I have myasthenia gravis and my arms are even worse than my legs so a manual one would be no good.

Did you easily accept needing a wheelchair or was it a struggle mentally?

I find life so limiting but still can't bite the bullet!

Oh yes. And the ones that have a massive fuck off display in front of the counter so I can't reach across to pay.

Tips on choosing: rent a few different kinds first. You can rent one for a month and see how it goes, then you get a feel for the sort of features you find useful anything you don't need. I can't give recommendations on rental companies as I was abroad at the time, sorry. Also, many mobility companies (and definitely any you want to buy from) will bring chairs to your house in a van for you to try out if you can't get to a show room. 100% try before you buy. And think about how you're going to use it. Does it need to be for indoor use? Cobbles? Distance radius?

I bought mine myself as I was lucky enough to have some savings, and the folding kind I have is in the £1000 - £3000 range rather than the 18k plus of the big solid electric ones with features such as as tilt in space, proper ergonomic back support etc that you'd need as a full time user in the house.

Honestly at the time I really didn't have a choice. I was working on a placement year and needed to finish the placement, in order to do that, to physically get to work, I needed a walker, then a wheelchair/ scooter. Renting helped at first because it felt less permanent, although I much prefer having my own now. To be honest, I'm only just now starting to process how dramatically my illness has affected my life.

The illness took my freedom. The wheelchair was a tool to get it back again. That feeling of freedom when I whizzed down the road my first time on a mobility scooter, it was wonderful. I'd been struggling along in increasing pain, being able to move again was amazing. And even more so once I got a chair with a good turning circle and control, and a decent distance range so I'm not worrying about charging it all the time.

Thank you, this is all really helpful. I am managing because I can drive. And I can move around the house. But I would love to be able to take the dog for a walk with DH or go round the shops or take the children out for the day

What effect do you think the visibility of your disability has on the way people treat you? I'm asking as a dm to DS with asd.

Thank you for doing this - I am passing your comments onto my daughters primary school. So much focus is (rightly) on racism and bullying, but I agree children need to be taught from an early age how to help/behave around wheelchair users as well.

Ah right yeah, I can't drive and was living alone so I was completely stuck without it. But being able to walk the dog or take the kids out would be so worth it!

This is an interesting one. I'm also autistic as it happens, so I've got an idea of what it's like to have more and less "visible" disabilities. I'd say people are more likely to realise that a wheelchair user needs reasonable adjustments to access services, although still not necessarily willing to implement them. I have a pet hate of that idea of "oo well if they were in a wheelchair you wouldn't refuse them a ramp/disabled loo etc", because people do, frequently.

I find people infantilise me more in the wheelchair. Treat me like I don't know what I'm doing, and always assume whoever is with me is my carer (no, it's my mate/ partner/whoever), and speak to them instead. If I did have a (paid) carer, I'd still be annoyed if people didn't address me. Just because my partner or friend or family member has to act in a caring capacity sometimes, usually because something is inaccessible to me, doesn't mean I'm not an adult. That happened occasionally with my ear defenders or if I got my communication cards/app out when my speech went, but not to the same extent. I get a lot of "ooo aren't you a brave one" and "good on you for getting out of the house" from total strangers when I'm just going about my daily life.

Oh this is really wonderful, thank you! And not just wheelchair users but other disabled people as well. Besides, bullying is often towards disabled kids, I was bullied as a kid for being different, socially awkward, uncoordinated, even though I didn't know I was autistic and dyspraxic.