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Not Your Mother's Wheelchair Etiquette

Not Your Mother's Wheelchair Etiquette

Conventional wheelchair advice is something that we've all been handed down by generations before us, especially if we did not grow up using one for any reason. Don't stare (and most people ignore this one blatantly) and be nice, don't assume the person is any less competent than you. I think, however, after transitioning into wheelchair use, that it is long overdue that wheelchair etiquette had a makeover.

1. Think Before You Ask 

This is a prickly one. Most disabled people will tell you they don't mind you asking, but honestly? You aren't the only one to ask that day. You may be the tenth person to ask "what happened that you're in a wheelchair?" or "Why are you in that wheelchair?" I also want to say that we can hear the bad intentions in your voice when you think we're faking it or it's a hoax. You saw me on my feet walking to the bus stop one day, for example, and now you're wondering why I'm in a chair.

Am I just being lazy? (If you think manual wheelchair user and lazy goes in the same sentence you need an education in the first place, but that's another post entirely.) I understand your curiosity. You were taught to think of disability as this all or nothing thing where you're either disabled completely or not, so chronic illnesses that require part time wheelchair use confuse you. You're also naturally set on fire with curiosity by disability. I get it.

It's just that I have other things going on in my life besides my disability, you know? Like the chicken salad sandwich I was digging into when you asked. And it's not really a simple thing. I can't be like 'Oh, I'm paraplegic' and have it be done. Several things contribute to me using a wheelchair, including being hit by a car and having spinal stenosis. Most people don't really know what spinal stenosis is and interpret it as my back simply hurting, which it's not.

I don't want to have to teach a class on this every time someone gets curious. You aren't the only one. Think carefully before you ask 'why I'm in the wheelchair' and ask nicely, without assuming that I'm faking it.

 

2. ASK FIRST

Never push someone in a wheelchair without asking first. Ever. This is one of the biggest violations of peaceful coexistence with your fellow man I can even think of. It's happened to me a lot in the short time I've been using my chair, unfortunately. People will grab the handlebars and just go. I get paranoid now if I start going faster than I think I should be going and look behind me to ask someone to stop.

The more alarming thing about this is that walking people seem not to get why this is so terrifying. It is literally as if I picked you up without asking and steered you somewhere you were never going and expected to get rewarded for my kindness for it. It is not kind to do this. Don't do this. Stop doing this. Don't EVER do this.

I've brought this up to people before and gotten called over-independent and over-confident. My wheelchair brings me an autonomy I didn't have before and restores my dignity. If I can't use my chair I'm constantly tripping and falling and sitting on the floor instead of standing. In my chair I can just...I can exist without there being a problem. I would like to wheel myself, thank you.

I don't mind when people kindly ask, assuming that you really are kind. If you think I'm an asshole for saying no just because I'm creeped out by you, that's on you. Sometimes I need help getting up over inclines or whatnot. So I do accept help when I need it. The fact is that I have to ask, though.

I think there's a popular perception that everyone in a wheelchair is automatically weak and incompetent and so people have this innate urge to help. There was one time when I wasn't using my chair but I was with someone who was using theirs. I asked them if they wanted pushed, they said no, and someone else came right up and began to push them without asking. Not okay. Never okay. For some reason this is seen as okay.

The only wheelchair I can afford right now is a crappy nylon transport chair with handlebars designed for healthcare professionals, so unfortunately people assume, despite me taking the breaks and armrests off, that I can't do this myself. And I can. I absolutely can. This wheelchair is me doing things myself. Please don't assume incompetence.

 

Always ask first if you're going to touch someone's wheelchair. Assume it's a part of them as a person. Would you like someone to touch your body without asking? No. To extend this, would you like someone to touch your personal belongings without asking, say, your glasses, your purse, your iPhone? No. Do not touch someone's likely more expensive than your iPhone and vehicle combined wheelchair without asking first. 

 

3. Assume They're Not Faking It

People use wheelchairs for a plethora of reasons, ranging from complete paralysis to occasional balance problems. There are a lot of people who can walk and use a wheelchair. I'm one of them. I can walk, with pain, for a limited amount of time. If I incorporate my chair into my routine, the pain and other problems are at a minimum.

If I am unable to use my chair for some reason, and worse, have to stand up for extended periods of time, I am a dangerous fall risk and get staph infections on my legs that extend into my system and I end up in the hospital.  I suffered a long time before getting the wheelchair because of a doctor years ago who thought I was faking it until she saw the X-ray results. Yet, I couldn't work in stand up industries. I just couldn't. Pain skyrocketed up to a 9 within 20 minutes if I tried, and then the infections and fall risks became relevant. People, not doctors, usually suggest just going on pain meds.

Pain medication usually makes me high and unable to compose myself in daily life, which is how often I'd have to be using them - daily. The wheelchair lets me be a participant in the world like I haven't been able to do for a very long time. (I was an early teenager before this started being a problem, so I don't really remember a life without disability, though it's been getting gradually worse.) I know that people assume I'm faking it. I know from the comments. I know from the 'I have back pain, too' assumptions that 'back pain' is all this is. 

I was in an inpatient psychiatry setting once where someone who had seizures frequently was put in a wheelchair by the doctor because they frequently fell and hadn't yet been given a helmet. They got up, they fell, and one of the techs came over and said 'Screw this. X can walk. If she can walk 3 steps, she doesn't need this chair.' The tech had obviously not been clued into why said patient was in a wheelchair (ie, not lack of ability to walk) but she perfectly demonstrated the common, damaging attitudes toward people in wheelchairs that make things worse. She took the wheelchair away.

 

I'm not faking it. It was yesterday when I realized it while I was talking to a friend and fellow wheelchair user who has supported me ever since I first went to the doctor, when the paralysis first started happening. I've so easily ingrained the 'you're probably just faking it' attitudes from other people that it's hard to realize that I'm really not. I can't work in places where I want to work because I blatantly cannot stand up for long periods of time. I can barely stand up at all. When I do, it's a world of pain, and very quickly it gets turned into sitting or falling down, whether or not there's a chair available. If I wasn't disabled, I could stand like a normal person.

 

So no, I'm not faking my need for a wheelchair. There are no benefits to using one in my current situation. To get discounts, you have to have SSDI disability, which is frankly harder than getting into an Ivy League college. (I'm in the process, but it's difficult.) 

 

4. Accessibility in your church, business, or house wouldn't kill you.

This isn't a huge task. Spacing chairs and tables far enough apart that a wheelchair can get through, including a ramp along with stairs, and other accommodations are available. I realize the 'house' part isn't up to people, but there are things you can do to make your house accessible. Just realize you're actively cutting people out when you don't make places easily accessible to people who use wheelchairs.

 

5. Accommodations are not special treatment. Stop calling them special.

 In the last situation where I had to ask for accommodations, it was assumed by peers that I was just lazy and asking for special treatment. I got a comment recently that my wheelchair was just in the way.  I try to ask for reasonable accommodation, and they aren't special treatment. They level the playing  field so that I can participate just like you can.

 

6. Yes, young people can be disabled.

I was told recently (by a doctor who isn't on my case) that I was squandering my life by being in a wheelchair. This made me laugh, because, well, no I'm not. I'm out participating in the world because I use this wheelchair. Be careful not to associate walkers/rollators, canes, an wheelchairs with aging and only aging. People of all ages experience disability. It's a natural part of life.

 

7. I'm not the only one - and we're not a monolith.

People in wheelchairs come with all kinds of different religious beliefs, political opinions, and ways of life. So some of you (wheelchair users) probably have other wheelchair etiquette rules to add, gathered from your own experiences. I encourage you to share.

 

 

More about wheelchair

How about a hospital bed that can be lower than a standard wheelchair?

Leave a Comment

  1. Artist on Wheels
    Artist on Wheels
    Very good and interesting article. I have postpolio syndrome. I wear a brace on one leg that helps me to make my transfers safer and I can take a few steps. I walked completely unaided until about the year 2000, using a cane occasionally. People have no idea how many times I've fallen and had bad bruises to deal with, fractures, xrays, et cetera because I've overdone it in the standing position. I've fallen so many times and messed up my C-spine that I now have titanium plates and screws in four levels, as well as rotator cuff surgeries on both shoulders. You've made some good points here.
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  2. Dances With Wheels
    Dances With Wheels
    Here's what I call BI-PEDIQUETTE :: THE "GIMP" RULES http://paidiraiompair.dreamwidth.org/9230.html
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  3. Riverhawk2006
    Riverhawk2006
    Yes! Yes! Yes! I am a T5 complete paraplegic who uses an ultralight manual chair. One of my best friends from college has SLE, the most damaging form of lupus and because of the joint inflammation he uses a standard manual chair when he goes to places where he has to walk long distances. Our two experiences could not be different when dealing with the non disabled public: I often get grabbed and pushed without my consent and asked why I don't get a power chair; my buddy (who frankly could benefit more from a power chair than I ever could) gets interrogated sometimes about his situation. He had to advocate for himself to even get the crappy heavy chair he's got! The entire system was designed by people without disabilities, it's clear. The system is f***** up!
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    1. lilboop63
      Hey agree totally but back many years ago when cities or towns or buildings were being made people did not think of the disabled we were thought of as shut-ins and not out and about in the community. I live in a very large city and I am astounded to this day that doctors offices still have doors that you have to push or pull to get into which are very hard for people in wheelchairs especially if you have to travel alone and even some government buildings you cannot enter I have found that in my neighborhood where I just moved I cannot walk my dog I have a power chair and I am in the street next to the sidewalk with my dog on this sidewalk so she doesn't get hit by a car. Yes things are messed up and they need to change and the only way they're going to change is if we speak up use our voices come plane find the right people to go to that can make the changes and let's get things done before we deserve to be able to walk down the street safely enter any building we so desire and have so much more available to us but that's for another time.
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