I'm disabled and a wheelchair user, AMA

[disabilityama]

As above.
People often seem to be curious.

Hi 👋 op, I’ll start. Is the most common. what led to you being in the wheelchair?

Also I’ll need one in a couple of years. I’m 38 and have a genetic illness.

Have you always needed a wheelchair?
Can you walk at all?

If a young child blurts out an insensitive question (eg “why aren’t they walking”) how would you prefer the parent to manage that.? Would you prefer they answer right there in front of you or quietly talk to the child to one side?

My daughter did that and I felt I dealt with it so badly. I wanted to educate my daughter but I didn’t want to make the person feel bad we were talking about them. Never been able to think of what might have been the best way to deal with that.

I have a chronic illness which is energy limiting, so I can do much more sitting down than if I was walking. I also have joint problems, muscle pain, dizziness, risk of seizures and/or vomiting if I stand for too long, so all in all the wheelchair makes the most sense. I don't tell strangers in public when they ask, I do occasionally wonder what would happen if I did give them a graphic description of my symptoms

What do you do when people stare at you? I'm using a wheelchair temporarily and it's very odd being at a lower eye level with everyone.

Has anyone ever moved your wheelchair or hung anything on the handles?
I've heard other wheelchair users say this has happened to them. People are so rude!

No, been just under a year now although I started with a mobility scooter and used a rollator for a few months before that.
I can walk some, I walk around my little flat, sometimes with a walking stick, sometimes without. Occasionally my legs give up and I have to bum shuffle about as my wheelchair isn't much good indoors.

Do you work?

Do you drive or rely on public transport?

Personally, I love children so I'd be likely to engage the child themselves if I heard that, and explain something like "my body doesn't work very well and I get tired, so I use this to get about and do things like go to the shops/ see my friends/ whatever seemed appropriate at the time". I'm used to explaining it having worked in schools and as a babysitter etc.
I don't know any wheelchair users who mind small children blurting things out, we know they can be curious.
In general it is better to address it openly rather than try to hide it or whisper, as children need to know it's not something shameful or bad. Depending on the age, something like "I don't know why they aren't walking. Maybe their legs don't work very well, or they get tired more than most people. That's called a wheelchair. I bet they go really fast!". Then it's really important to explain that we must never touch someone's wheelchair (/walker/ stick). If a kid grabbed my joystick, I'm likely big and strong enough to take their hand away, but they risk running the wheelchair into themselves. Similarly, I heard about a disabled toddler recently who had her walker snatched from under her and broke a leg, so that message of "don't touch" is worth repeating every time you see someone with a mobility aid, just in case.

@disabilityama thanks. I’ll bear
your response in mind

Interesting topic @disabilityama. Would you mind if I joined you in the AMA? I am a recent wheelchair user who had a history of full ability over many years but life caught up with me...

Sure!

Stare back!

Thank you! @disabilityama xx

My current wheelchair is a folding electric, so it can't be moved by someone else with me in it. People do often grab hold of the bar on the back for no reason.

When I used a very lightweight folding electric wheelchair (not so comfortable for a long train journey so I used to sit in a seat), I was on the train once and the assistance staff put the chair in a luggage rack at the other end of the carriage. On arrival I asked for them to get my chair down and put it at the nearest door for me to get in and roll off the train. There was another wheelchair user in a different carriage, and instead of taking the ramp in turn to each door, the assistance staff carried my chair the length of two carriages, leaving me to wobble after them. I was a new user at the time and didn't have the confidence to call after them to bring it back, and I was capable just about of the distance, but now I'd call them out on it. I always stay in my wheelchair now.

At the moment I do a few hours online teaching, I'm three-quarters of my way through my degree at a top university and taking some time out to focus on my health. When I'm more stable I intend to have a career, ideally in disability advocacy and advice work (so freelance), but I will likely earn most of my money teaching extra-curricular classes online in my subject.

My first quick observation while I sort out dinner, is that when I go out and about in my town, I have often passed people I know who have totally blanked me because, I assume, I'm passing them at waist height rather than my pre-disability height of around eye-level.

I haven't learned to drive, it would be difficult as I'm dyspraxic, autistic, and have adhd as well as my illness, but not impossible. I wouldn't be allowed at the moment due to uncontrolled seizures. I know a lot of wheelchair users who do though, the main barrier is that adapted cars are extremely expensive, rather than the disability itself.

My sister suffers with MS which in her case means she cannot walk at all and can only use one of her hands. What do you wish could change in our society to improve your life quality? Ie better designed disabled toilets, automatic doors everywhere etc etc.

Also, do you take offence if my child holds a door open for you? Someone properly screamed at my 14 year old recently. He’s been taught it’s good manners in general and truly wasn’t doing it just because he spotted a wheelchair user. I was SO angry about that situation as he actually sobbed.
Did the wheelchair user have a point - is it actually offensive??

Oh I've had this too, it's depressing really

@disabilityama I know! But I have decided that, going forward, I will make sure I look them in the eye as I get to them and say "Hello <insert name> how are you? Lovely to see you!"

Second question first. It's not offensive, I guess that person was just having a bad day or was an arsehole. However, if people hold the door wrong, we can't get through, which is annoying, especially if the holder has the attitude of oo I'll just help you as you obviously can't manage without me, although it sounds like your DS wasn't one of those. By "wrong" I mean blocking the gap with body or feet, or leaning across me. Still wouldn't scream at someone for it, especially not a child!

First question I will have a think about in detail and get back to you. It's a great question though, thanks

What do you wish could change in our society to improve your life quality? Ie better designed disabled toilets, automatic doors everywhere etc etc. @Vallmo47 thank you for this question.

Infrastructure

Ramps, ramps, and more ramps. Seriously, the number of shops and restaurants, opticians, banks, even doctors, that have a step(s) to get in and no ramp available. Ideally, as many places as possible would have level/ ramped access built in, so as not to have to ask to get in, but if that's not possible, at least have a portable ramp.

Doors are less of an issue for me personally as I only use one hand to drive and have full use of the other arm, but I know automatic doors are essential for a lot of wheelchair users, so yes.

Disabled toilets that aren't used as storage for cleaning supplies, have proper red cords all the way to the ground (safety requirement), have proper space around the loo to transfer (again not an issue for me personally). Baby change tables in the disabled loo should be low enough for a wheelchair using parent to use, if they're too high for us to reach properly, put them somewhere else. One in the mens, one in the womens, perhaps. And if it must be at standing height and in the disabled toilet, it should be a flip up one, not a fixed table, as that takes up way too much space in the average disabled bathroom. We need room to manouever.

Seatbelts in the wheelchair space in buses. In Spain, there is a seatbelt that can go around the back of the wheelchair to secure you in place, as well as a bar. With a lightweight chair, that is much safer than just the pull down bar on UK buses. Otherwise I end up clinging to the rail for dear life and putting my shoulder out. Also, two wheelchair spaces instead of one wheelchair space and an awkward flip down seats area that would be big enough for a wheelchair, they just haven't put in the backing and the bar. Again, something on Spanish buses. Usually just avoids conflicts with buggies, but occasionally both are needed, plus I could actually travel with a friend who also uses a wheelchair.

Speaking of buses, a better public transport system, cheaper and more frequent. When you might not get on a bus because the one space is occupied, having buses every ten minutes would be vastly preferable to a bus every 30 minutes or an hour.

Attitudes
Disability civil rights history should be taught in schools, along with the basics of don't touch mobility aids without permission, don't ask intrusive questions to strangers going about daily life etc. Most people don't realise that our predecessors fought for us to have access to public spaces, and that we are still fighting every day.

I would like people to realise that getting disability benefits (PIP) is a long-winded, intrusive, and often traumatic process, for very little money.

And I would like for people to know that just because someone can move their legs, it doesn't mean they're "faking it" or don't need a wheelchair.

Going to make tea now and it's date night with my partner, so I'll be back later or tomorrow