r/YouShouldKnow • u/LtSoundwave • Jul 19 '20

Other YSK That many people with a disability consider their aides (wheelchair, etc.) an extension of themselves. You should ask before touching or moving them.

Read this article and was surprised to hear how many people struggle with this. Even if you are trying to help, you should ask first.

www.bbc.com/news/disability-49584591

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547

u/davidjohnwood Jul 19 '20

Touching my wheelchair when I'm in it can be extremely painful for me. Heaving on my chair to pull yourself up can knock carefully aligned components out of alignment, which can twist my body in subtle ways that can cause me ultimately to collapse in pain.

Please don't touch my chair without asking me first.

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u/[deleted] Jul 19 '20 edited Jul 19 '20

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u/Ein_Maschinengewehr Jul 19 '20

Get her a walker for christmas (if you plan on giving her a gift and it's in your budget, obviously), see if she gets the message.

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u/[deleted] Jul 19 '20

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u/[deleted] Jul 19 '20

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u/J3ST3RR Jul 20 '20

Yeah your mom sounds like a bit of a cunt

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u/[deleted] Jul 20 '20

Fuck her. Those are your wheels and you need to sit up for yourself. If she's whining about your speed tell her to go alone. You're an independent adult and so is she.

Also. Buy her the damn rollator regardless. Give her a walking aid and then remove the handles from the chair. Saw the damn things off if you have to. Cover them with zip ties with the free end cut at jagged angles, all criss crossed around it. Do whatever, but make your point. She isn't pushing you because you're slow, she's just too proud and cheap to get a proper aid.

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u/ShesMeLMFAO Jul 20 '20

It's not easy to get out of a codependent relationship with a parent, especially when you have a disability.

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u/Noinipo12 Jul 19 '20

Sounds like you could use a Smart Drive or other power assist device. I just wish they weren't so damn expensive.

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u/[deleted] Jul 19 '20

Slap on some of these bad boys and see if she grabs your handles ever again lol

https://www.etsy.com/listing/768559885/spiked-faux-or-real-leather-wheelchair

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u/doobiee Jul 20 '20

You should be grateful for a mother that will still push you around constantly, every day, as well as taking care of your other needs. Like, that is brutal on a mom. Yet you want to embarass her at a funeral for touching your wheelchair. You kinda sound like the cunt here. Your wheelchair is an extension of you, but you have become an extension of her.

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u/[deleted] Jul 20 '20

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u/doobiee Jul 20 '20

I will apologize for being slightly rude. I have disabled friends, one of who is a real piece of work, and I was reminded of his behavior and I may have let that in my head when I posted my comment. Def a conversation you need to have with her, but I still think embarrassing someone at a funeral is a cunt thing to do.

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u/ErisEpicene Jul 19 '20

Holy shit. I can't imagine using someone's chair to help yourself move. When I worked direct care, I had a very close relationship with a woman in a wheelchair who routinely needed help getting around. Even for everyday things, I'd still ask before even pushing her nine times out of ten. The ten percent were mostly near disaster situations, like going off the sidewalk and starting to tip over.

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u/davidjohnwood Jul 19 '20

Indeed. Pushing someone's chair without their permission with them in it is like picking someone up and putting them down when and where you choose.

In my case, nobody needs touch my chair as I'm a powerchair user and I don't even have push handles. Even so, people think it's OK to grab hold of my chair to steady themselves, heave themselves up a step or similar. The chair will rock somewhat on its tyres - and if you pull with all your weight on my backrest, you'll probably move the mounting hardware and twist my spine as a result.

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u/MathAndBake Jul 20 '20

Yeah, the only time I'd consider touching someone's mobility aid without consent would be a "stuck in a pothole with an oncoming out of control truck" situation. And that's literally the kind of situation where I've seen grown adults grab and move other grown adults regardless of ability. It's super rare. It almost never happens.

I'm super lucky that the only times I've needed a cane, I've also had pain-induced resting bitch face. But I can't imagine if I was just going about my life with my normal face and a mobility aid.

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u/davidjohnwood Jul 20 '20

You're very wise. As you say, those times when you need to step in without asking are extremely rare. If it looks like I'm going over, I strongly suggest you keep out of the way! The combined mass of me and my chair is over a quarter of a ton, which will do serious harm to another person if it falls onto them.

Powerchairs are not easy to topple - they have a low centre of gravity because of the large batteries and motors down low. I have toppled over twice by misjudging gradients. One was onto soft ground backwards - I rolled out of the chair which needed righting. The other was sideways onto a barrier from a sideways slope - with someone pushing on the low side of the chair as I directed them, I was able to rescue that one.

Manual chairs are easier to flip, especially if self-propelling. Back in the days when I could still self-propel, I managed to somersault a chair by hitting the raised edge of a paving slab. That time I could have done with help - I came out of the chair and hit the ground rather hard, plus the chair fell on top of me. Everyone ignored me! If someone had asked "do you need a hand?" and listened to what I asked for, it would really have helped.

That gets to the important thing - a polite and non-specific offer of assistance if someone appears to be struggling can help a lot. Please don't take away my independence or assume you know what I need, as you are probably wrong.

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u/MathAndBake Jul 20 '20

Wow! Hadn't realized power chairs could be that heavy! Makes sense, though. I can't believe people saw you somersault and didn't take any notice. That's awful! Offering help is super basic.

It is weird that there's no one to help when you need, and too many cooks when you're really fine. When I was growing up, I took a nasty fall on a super icy intersection with a bus coming at me. I somehow made it to the opposing sidewalk on the adrenaline alone. I was a teenager, so I was really fine, but I was very scared and shaken. If there was ever a time for someone to bodily drag me across the road, that would have been it. No one was around, though.

Lots of people were absolutely insisting I take the elevator/sit down/stay home when I had my cane, though. They were super well-meaning, but seriously, if I needed the elevator, I could ask. I eventually had to have words with people in various communities I was a part of, just to remind them that I was still me and knew my own mind. Offers of help are great. Bossing me around is not.

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u/davidjohnwood Jul 20 '20

The heaviest production powerchairs I am aware of are close to 170kg with batteries but no occupant. The occupant could be up to another 160kg on top on that model depending on the options selected (it's a modular chair - a Quickie Q700M). You do not want to be in the way of that going over!

It is so hard when people try to take your autonomy and independence from you. Unless there is an issue of limited mental capacity, there is only one person who can rightfully make decisions about you - and that is you! To others, some of the compromises you make might not appear to make sense, but it is none of their business. If something is important to you, you might push yourself to do it, handle the consequences and come out on top overall.

Similarly, as you say, there are so many times when you value simply being able to live your life without being fussed over, no matter how well-meaning people are. I am like this most of the time - let me get on with my day; I'll ask for help if I need it.

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u/ingululu Jul 20 '20

I had no idea people did this. Seems right in the personal zone - would never occur to me to touch it.

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u/davidjohnwood Jul 20 '20

Thank you for your sensitivity and understanding. As you say, it is right in the personal zone.

Sadly, some people think people's aids are there for their amusement. Polite questions with a genuine desire to learn might be responded to favourably, but there is a point where you just want to get on with living your life.

I was once on a committee with a woman who worked with a service dog (trained by one of the recognised service dog organisations here in the UK and wearing an ID jacket issued by them). When the dog's jacket was on, she was working - she was not to be distracted or treated as my colleague's pet. She stayed with my colleague at all times, including in the bathroom, so offers from well-meaning strangers to mind the dog when she went to the bathroom were inappropriate.

When the dog took a break, her jacket came off. At that point, the dog was free to relax, eat, drink, go to the bathroom and play with her owner. That was the time when, with her owner's consent, you could play with her as a dog. That dog gave great cuddles to wheelchair users!

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u/Dubnos Jul 19 '20

How is it be painful for you

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u/davidjohnwood Jul 19 '20

I live in a body with extensive neurological issues. The slightest touch can sometimes be agony. I also have muscle problems leading to episodes of spasm, which adds to the pain.

Wheelchairs are less firmly planted on the ground than an ordinary chair because of the give in the tyres and, on some models, the suspension. I'm sat on what amounts to a large bag of gel for pressure relief reasons, which is like being sat on jello, further exaggerating any movement of the chair.

There is also the way that movement travels through the frame of the chair into my backrest and into my body. A slight rock can jar my entire body.

There is a difference between unexpected movement from what others do to my chair and movement that comes as a result of me moving my own chair. Think of it a bit like riding a horse - you adapt to expected movement.

Another factor I didn't mention is that your chair is an extension of your personal space. I wouldn't think it appropriate to pull on or even touch a chair someone else was sitting on. Why do people think it's appropriate to touch my chair?

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u/Dubnos Jul 19 '20

What if someone flykicked your chair

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u/davidjohnwood Jul 19 '20

I indulged you with one answer to a question where I could rightfully have answered "none of your business" in the hope it would be educational.

Disabled people do not exist for your amusement, nor to intrude upon. Life and health have already forced us to accept things that many would find difficult - in particular, many of us don't always get to maintain privacy because of the need for assistance. Don't take away my dignity and demean yourself in the process.

The answer to your question is "I would expect to call an ambulance to take you in with a broken foot". Whilst the mounting hardware is not always the greatest, the shell of my backrest is a hefty piece of metal.

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u/Dubnos Jul 19 '20

Lol k

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u/Beatnholler Jul 20 '20

Don't be a dick dude. You're only making yourself look stupid when a stranger gave you the benefit of the doubt.

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u/Dubnos Jul 20 '20

I'm jus askin

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u/[deleted] Jul 20 '20 edited Dec 13 '20

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u/davidjohnwood Jul 20 '20

I'm more than happy to answer questions as politely and respectfully put as yours, Dmitri. Unless we learn from each other, how do we ever move forward in a better way? I stress that this is a personal response, but hope that many other disabled people would agree with the key points within it.

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The most important thing is to give honest replies to requests for information or help. I have been in situations when people think they're doing me a favour by being over-optimistic, but they're not. If you tell me my chair will easily fit into your premises, that you have an accessible bathroom or that you can reserve me parking for my large van, but you can't, you have potentially put me into a situation where I have made a decision to visit, I'm out of my depth, and I simply have to struggle.

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The next most important thing is to remember that accessibility is, in a large part, about the human element. I have been at conferences where the arrangements committee took the view that the physical access features of the venue were good so accessibility for all was sorted. However, their failure to recognise that the human element will not magically sort itself out together with their failure to be there when I needed to ask for help made things go wrong. It's no good having supposedly accessible catering if I discover there is no way I can make my way through the queues or find a suitable table to eat from and there's nobody available to give me a hand. Conversely, I have been at conferences where the physical access was not so good, but the arrangements committee went out of their way to provide accurate information on access (including photos of things like bathrooms - photos or video clips are so helpful as you learn to judge the accessibility for you very quickly) and to be there for anything I needed. They were always great experiences, and often I came away feeling everyone had gained - I had been able to participate as fully as my health allowed whilst they had the satisfaction of knowing their efforts had made a huge difference to me.

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Every disabled person is different - there is no such thing as a standard wheelchair user, hearing impaired person and so on. If you are not sure, ask politely. Saying "is there anything you need from me/us?" and being serious about responding fully and accurately helps so much. You are right to say that most disabled people will want to be independent and will not appreciate people leaping in with well-meaning help they don't need, but my view is that a polite non-specific question is helpful. It is only the same question you would expect from a shop assistant to anyone who is browsing, disabled or not.

Many disabilities are hidden. The things that you can see about me are not the most disabling aspects. In particular, attempts to 'police' concessions based on what you see are misleading. People like me need accessible bathrooms, but they are also quite rightly used by people with inflammatory bowel disease, incontinence, who have a stoma to look after, women with heavy bleeding and many more. If someone asks "can you show me where your accessible bathroom is?" then you should always show them even if you cannot see a reason why they need that facility. It is never appropriate to challenge someone about their needs or ask them to reveal personal and private information about themselves unless there is a compelling need to do so. Indeed, disclosures of this kind of private information and especially storing this information about anyone is restricted by law in many jurisdictions.

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If you want to learn more, read up on the "social model of disability". I don't have any specific references to offer, but there should be some good material out there. The Wikipedia article on the social model is good, but is rather academic. I'll try my own explanation. Under the social model, my impairment is an indivisible part of me and should not be seen as a negative - my body does not do a lot of things that most people's bodies do, plus it does more than a few things that most people's bodies don't (and I wish it wouldn't!). The problems with my muscles are an impairment. The disability that those muscle problems cause is down to society:

  • am I able to get the aids I need (powerchairs are very expensive)?
  • is the built environment suitable for those aids?
  • are people giving me accurate information and any assistance I need?
  • do people's attitudes towards me limit me unnecessarily, or does their understanding and flexibility mean I can do more?

There is good disability awareness training out there, but I'd say that you have the key knowledge already. That said, we can always learn more - I am constantly learning, especially from people whose needs fall into different domains than my own (I know far less about learning difficulties and sensory impairment than physical impairment, because the latter is my lived reality).

I am certainly happy to answer follow-up questions if that is helpful. Thanks for asking your question; I hope this reply is helpful.