(Updated!)
Alright, this is going to consist of one solid concept and then variations on what to do with that concept. With the amount of faux paux, ignorance, and just straight up bad behavior I have seen myself, I feel like this is necessary. I do not believe that I should have to add a sarcasm warning to something with the words "smart ass" in the title, but there you go.
Alright, this is going to consist of one solid concept and then variations on what to do with that concept. With the amount of faux paux, ignorance, and just straight up bad behavior I have seen myself, I feel like this is necessary. I do not believe that I should have to add a sarcasm warning to something with the words "smart ass" in the title, but there you go.
If you find yourself sputtering “But, but…” or getting angry or defensive – well, you will have to deal with that. There are guides out there that are more politic, nice, and cater to the discomfort that the able-bodied or temporarily able-bodied feel in these situations. I do not give a damn about that. You have been warned!
Main concept: a person in a wheelchair is just that – a person in a chair. Person. Chair. That is it. The corollary to that is this: do not do ridiculous shit. If you remember nothing else, remember this, and it should guide you well.
Editorial note: I often just say "wheelchair" as that is the scope of my experience. As far as I know, all this also applies to the users of scooters and power chairs. If I am mistaken, please let me know in the comments and I will happily make appropriate changes.
Now let’s talk about how that plays out in real life.
Do not touch the damn chair! I do not know what kind of swoon overcomes the temporarily able-bodied, but they seem to forget everything they have learned about behaving in public when they come in contact with a person in a wheelchair. Do not touch the chair. Is it normally okay to mess with other people’s things without asking? No? Well, that is settled then. It is not your prop, leaning spot, or fucking toy. It is a tool, and part of a person’s personal space.
Do not touch the wheelchair user! For pete’s sake, if you would not normally casually touch a person, you do not get the right to do so when they sit down. It is okay to shake hands, the user of the chair will let you know if they do not want to or not able to do so. And I swear, if you pat me on the head, you may pull back a stump.
If the user of the wheelchair is in the way, politely ask them to move – like you would any other person. See, we are still well within the “just a person in a chair” concept. If you would not say it to a temporarily able-bodied person, then do not say it to a person in a wheelchair! Do not bump around the user, or act like they are not there.
Do not do ridiculous shit. Do not make snide comments about how it must be nice to sit around all day or anything like that. If you think that it is nice to have every place you go smelling like ass, then you can have it. Do not assume that using a wheelchair equals some kind of tragedy, and for pete’s sake do not talk about how you “would rather die than live like that.” That just makes you look like an ass. Do you lament the use of eyeglasses? -- alright then, same general concept. A wheelchair is a tool to use to navigate the world, sometimes a person's only key to that world.
If you are going to have a conversation with a wheelchair user, then bring yourself to eye level. Have a seat, whatever. If the user has to look up at you, then they are going to get a stiff neck if that goes on very long, and may stop looking at you. This rule may not apply in all situations; keep in mind that some folks are not going to make eye contact anyway for a number of reasons.
Unless a site is verified as handicapped accessible, it probably is not. Do not assume that the ADA (I am US-centric) had a magic wand and made the world a happy fun place for all. It did not. Some things are obvious: stairs, narrow hallways, steep ramps. Some things are not so obvious: gravel, thick carpets, chunky room transitions. Hills suck (I am looking at you, Dayton, OH). If you are arranging an event, take a look at the site from a the perspective of someone that uses a chair/scooter. Hell, ask someone that uses a chair or scooter to go there with you and confirm.
If a wheelchair user looks like they may need help, ask. Do not get all huffy if they do not seek, want, or require your help. Each person best knows their own abilities, and wheelchair users are no exception. They may not need your help, they may not know or trust you. None of this is any reason to make your able-bodied outrage face about it.
Speaking of help, if you do end up pushing someone’s wheelchair, do so with care. It is not a toy, and you are supposed to be helping the person in it. Pay attention, and try to extend your spatial awareness around the chair. Otherwise, you end up bumping into things, and this can be physically harmful. You also need to exercise an awareness of the person in the chair and where they want to go. You have been granted a great amount of trust, do not abuse it. If you cannot do these things, do not offer to help, because you will not be helping.
Do not worry about your kids. They are going to ask, and that is totally okay. What is not okay is rudeness. Do not do it, and do not let your kids be rude. The person in the chair will set the limits for what they will and will not discuss with your kids.
The use of a wheelchair does not mean that a person’s legs are useless. There are many reasons to use a wheelchair: fatigue, balance, physiological malfunction, dizziness, to name just a few. You do not get to make your shocked face when someone gets out of their chair. Speaking of transfers, do not ever move the chair away from the user without permission.
Guide animals, not so much with the touching them. They are working, people. If you simply can not resist, then ask first, and politely accept the answer, even when you do not like it. I do not care if you are a “dog person” or whatever; it is not your place to decide. I do not have a guide animal, so this is more of a general PSA than my personal experience.
*"The reason why people aren't supposed to pet a working dog is because their rewards are generally associated with when they work as opposed to randomness. They get praise and treats for alerting their companions to important sounds (i.e., in my case; for people with hearing difficulties), doing physical tasks (for a person using a wheelchair), etc. If too many people pet the dog guide, s/he will not work. I find that explaining this to people makes a world of difference." (bastetschylde)
*"I also use the term dog guide as I have learned from my school that it's much more empowering and lends independence to the companion than guide dog does." (bastetschylde)
*"With service animals...do not assume the person with one is blind or is training them. There's a lot of those "invisible disabilities" out there and no, it's not your business what the disability is. You do not get to judge if someone needs a service animal or not, so keep your comments to yourself." (Shiny)
*"The reason why people aren't supposed to pet a working dog is because their rewards are generally associated with when they work as opposed to randomness. They get praise and treats for alerting their companions to important sounds (i.e., in my case; for people with hearing difficulties), doing physical tasks (for a person using a wheelchair), etc. If too many people pet the dog guide, s/he will not work. I find that explaining this to people makes a world of difference." (bastetschylde)
*"I also use the term dog guide as I have learned from my school that it's much more empowering and lends independence to the companion than guide dog does." (bastetschylde)
*"With service animals...do not assume the person with one is blind or is training them. There's a lot of those "invisible disabilities" out there and no, it's not your business what the disability is. You do not get to judge if someone needs a service animal or not, so keep your comments to yourself." (Shiny)
Using a wheelchair can be hard work. So, if you are accompanying a wheelchair user, keep this in mind. During long stretches of movement (like mall walkways, hotel hallways, etc...) ask if the user would like to take a break. Look for signs of fatigue. Bonus points for hunting down restrooms so they are easier to get to when needed.
Although it should not need to be said: treat the user of the wheelchair as a person. Talk to them if you want or need to, not their partner, aid, chair pusher unless you mean to talk to their partner, aid, chair pusher. I have taken to carrying my cane, even when I know I will not use it, expressly for physically prodding people that talk to me through my husband, even though I am right there, but in my wheelchair (or at least entertaining myself with the possibility).
*Do not treat the wheelchair user as a child! (Vargr)
*Do not treat the wheelchair user as a child! (Vargr)
My Awkward Moments series will almost exclusively be about people screwing up the above ideas.
One last time: a wheelchair user is simply a person in a chair. Person. Chair. Easy.
Okay…
Okay?
Okay.
Got a tip to add? Go ahead, that is what comments are for! Speaking of, I reserve the ability to return and edit this post accordingly with the brilliant additions of my suave readership (will ask first), and whatever else may come to mind, or reveals itself in my travels.
Edit (September 4, 2010 3:20pm): I have edited this post to include suggestions from the comments, and I am incredibly grateful for them! Where I made mistakes (regarding dog guides/service animals) I left my mistakes intact and then quoted the correction. This is to show that I am grateful for the help, but I will not pretend that I did not screw up. I own that. Thanks again for reading, and for lending a hand!
Edit (September 4, 2010 3:20pm): I have edited this post to include suggestions from the comments, and I am incredibly grateful for them! Where I made mistakes (regarding dog guides/service animals) I left my mistakes intact and then quoted the correction. This is to show that I am grateful for the help, but I will not pretend that I did not screw up. I own that. Thanks again for reading, and for lending a hand!
I apologize on behalf of Dayton, Ohio and its hills.
ReplyDeleteI also want to say that I witnessed firsthand a nurse (not a layperson) say that she was "just going to move" C as she needed to get another patient through a narrow hospital room. Why is this acceptable behavior? I truly doubt that she would have physically manhandled anyone not sitting down, so why would she have been so rude to someone who was?
Thanks for making some excellent points. :)
Well, unless you had glacial control centuries ago... =)
ReplyDeleteYeah, she's going to be my next Awkward Moment, and I've got a few from way back that I am going to use.
Thanks for commenting!
Recently, I helped out someone in a wheelchair. When we were walking with a third person, I found myself walking next to that person; which then made the person I was pushing have to twist awkwardly to talk to the other person. As soon as I realized this I slowed my pace so that the person using the chair was level with the third person. But every time I stopped thinking about it, I would do it again.
ReplyDeleteSo this is anther tip, for those who don't need to use a wheelchair yet. Pay attention when you are helping someone out who is using one.
"Speaking of help, if you do end up pushing someone’s wheelchair, do so with care."
ReplyDeleteI'm so bad with that. -_-;
I used to accidentally run my Dad into stuff all the time. He was pretty patient about it though. He'd grunt and make a face, but I think he'd tolerate it because he'd rather have his clumsy teenage daughter pushing him into things than dealing with the aides at the nursing home.
Arg! I wish Blogger had nesting comments!
ReplyDelete@Jen -- You are one of the people I know that is really good at WC pushing, probably because you notice stuff like that!
@MercifulVoodoo -- Eh, you have to make room for people to learn how to help. Hell, my hubby still runs me into things sometimes. And I'll bet you got better at it, 'cause you noticed and you cared.
It seems to me that many able-bodied folks have little or no experience in acting on your main point. A person in a wheelchair is first and foremost, a person. In particular, it always disturbs me when I hear someone talk to an adult wheelchair user as if they were a child.
ReplyDelete@Vargr -- Agreed!
ReplyDeleteOh, good point! I don't get that much, so I overlooked it when I was writing. I will probably add that as an edit, if you don't mind?
"Guide animals, not so much with the touching them. They are working, people. If you simply can not resist, then ask first, and politely accept the answer, even when you do not like it. I do not care if you are a “dog person” or whatever; it is not your place to decide. I do not have a guide animal, so this is more of a general PSA than my personal experience."
ReplyDeleteI was referred here by Jenn
As a dog guide user, I applaud you for posting this. The reason why people aren't supposed to pet a working dog is because their rewards are generally associated with when they work as opposed to randomness. They get praise and treats for alerting their companions to important sounds (i.e., in my case; for people with hearing difficulties), doing physical tasks (for a person using a wheelchair), etc. If too many people pet the dog guide, s/he will not work. I find that explaining this to people makes a world of difference.
@bastetschylde -- Thank you for visiting and posting a comment!
ReplyDeleteI really appreciate you taking the time to let us know more about guide animals, that was very helpful of you (I know sometimes explaining 101 stuff can get irritating). May I have permission to add your statement into the SmartAss Guide? If so, would you like me to note it to the name you used above or another one?
And thanks, Jenn, for passing it on. I have a big warm, fuzzy moment going on now. =)
Please go ahead and repost as that will be a part of disability awareness/education and the more that know, the better, :). You can use this name, no problem, and I am honoured.
ReplyDeleteI also use the term dog guide as I have learned from my school that it's much more empowering and lends independence to the companion than guide dog does.
With service animals...do not assume the person with one is blind or is training them. There's a lot of those "invisible disabilities" out there and no, it's not your business what the disability is. You do not get to judge if someone needs a service animal or not, so keep your comments to yourself.
ReplyDelete@bastetschylde Thank you very much! I plan on editing it tomorrow once I have some sleep in my addled brain-pan. And thanks for the language tip, I had not considered that!
ReplyDelete@Shiny Very true! I will add something about assumptions up there, thanks!
ReplyDeleteYeah, I have another post(s) I am writing about invisible disabilities and how people should butt the hell out.
One question... What do I say when my foot or appendage of my dress is run over or caught by a wheelchair or scooter? I've been run over so many times and usually get a very rude response even when all I've said is 'ack!' or 'ow!' in surprise (because I didn't notice them behind me or passing me while I was doing something else.)
ReplyDeleteI'm pretty good at being polite, but it seems to drive me to distraction not to talk about the one thing which is probably the most boring topic in the world to someone in a wheelchair. I want to ask about the design, or the choice of this type vs that one... It's so hard to not being annoying.
The first thing I want to say is that, in my experience, it is bad to run over things on purpose. It can screw up your chair, your hands, and your wrists -- so I would not run over anyone on purpose (even when tempted). It takes practice and a knack to keep your eyes far enough ahead to avoid obstacles, and yet also look close enough just in front of your wheels to avoid anything close. Standing people rarely look below adult conversation level, so the best advice I can give there is to help keep an eye out so that toe/dress rolling does not happen.
ReplyDeleteIf someone knew me and asked about the details of my chair itself (rather than whatever assumed tragedy put me in it) I would probably entertain it. So, if you know someone, you could probably venture it -- but, in my opinion, it would be treacherous territory for getting-to-know each other chitchat. If it is an obviously tricked-out or modded chair, the user of it may well be more open to chatting bout it.
If an epileptic has a partial seizure, i.e. a single slight-to-moderate jerk, don't take that as an invitation to grill the person on their disorder, medication status, or as a cue to condescend to them. Follow the cues of the person on how to react. If they ignore it, go on as if nothing happened. Help them up if they fall (if they need and want assistance). Refrain from asking them over and over if they're alright. Be discreet, polite, and respectful.
ReplyDeleteMost importantly, don't take it as a cue to run off to tell a supervisor, friend, doctor, or to call 911. That's an invasion and violation of privacy and trust.
@brittanyannwick Very good point! I may, if permission is available, put comments like these into a further guide on how to usefully interact with disability in general.
ReplyDeleteI do not know what makes people in a position of ignorance become all-knowing concern trolls. I think it is the infantilization of disability.
I am really happy with this post, and want to thank everyone that is reading, and contributing such good ideas!
Feel free to use my comments. I write about my epilepsy and disability on my blog as well, so if you'd like to use that as a resource, you can. Just link back to the post that you used.
ReplyDeleteIt is-I've experienced it on more than one occasion, most often from EMTs and ER personnel. Our bodies and minds are different, so in their mind, that translates to their being intellectually superior.
Thanks for writing about this-the more the word gets out, the more people will (hopefully) think and change their behavior!
I came here from Feministe, and I just want to thank you for this post! I've never really thought of concern-trolling, but...I tend to be socially awkward in my interactions with people and overthink what I should do. I tend to be blunt or act like people can talk about sensitive topics reasonably (apparently, if you're under 30, you're not allowed to ask the age of anyone over 30) and have gotten a lot of flak for it in my life. So guides like these help me feel less awkward about my social interactions, especially since I'm currently in a community that doesn't have a lot of wheelchair users, so I can't model my behavior off of others' (also, when the community model is flawed, as it so often is in these cases, things can definitely go sour).
ReplyDelete@brittanyannwick Excellent, thank you very much. And you can count on me regularly reading your blog! For some reason, going back to BBS access in '92, it's just been the past year or so where I have combined my social justice passions with the internet. **shakes head**
ReplyDeleteI may write some more about this as it comes to me...
@konkonsn Terrific, I read Feministe every day! Thanks for visiting and commenting! As far as I am concerned, it is okay to be blunt -- I rather prefer it. Yeah, people can be sensitive, and it is awfully difficult not to be when you get hit with stupid stuff all the time. Mostly, this guide relies on the "person in a chair" concept, so if you hold on to that, you should be fine. =)
On the service animals thing -
ReplyDeleteIt's not just 'don't pet my service dog'. It's don't DISTRACT my service dog. Don't get down on his eye level and baby-talk at him. Don't try to feed him. Don't start blowing kisses at him and talking to him in the 'dog/baby/small child is so cute!' voice. You distract my dog, you endanger me. It's a very simple equation.
Dogs are social animals. Most of them like people. That means that a person who is obviously trying to get their attention will, gasp and egad, get their attention sometimes! If I was walking, you wouldn't start doing things to my leg to get it to react - likewise, you shouldn't do things to my dog to get him to react.
~Kali
@brilliantmindbrokenbody -- Great point! Do you mind if I add it to the article?
ReplyDeleteMay I post a link back to your blog from mine? I am not 'differently abled', unless you count glasses & a distinct lack of a sense of direction, but this information is so valuable I feel it should be spread far & wide.
ReplyDeleteIf just one more person thinks before doing something stupid or rude, then my time and effort (& more to the point, -your- time & effort) have been well-spent.
I'll admit, some of your examples had my jaw dropping in disbelief. I don't why I am so surprised that people could be that rude, but I am.
This is a fantastic post. Your point about Person. Chair. is one that so many people overlook, and it's pretty damn important. And I am so onboard with the "let kids be kids" portion - a three year old asking a question about me or my chair is 99% less likely (In my experience) to be rude than an adult.
ReplyDeleteAnd, this may not go with your post, exactly, but sort of semi-relates to the please crouch down to be at our level if you are talking to us rule: Something that bothers me is when people don't realize, exactly, what height my face is at. I'm talking about you, Ms. 12 pieces of wood sticking out of your cart at home depot - that's my face/neck/back you're aiming for! Also known as Your behind is too close to my face, thank you very much, so move it.
@Sewicked -- Sure, sure! Feel free to link away, and thank you for asking.
ReplyDeleteWow, thanks!
Yeah, some of these things, I couldn't believe they were happening AS they were happening!
@NTE -- Yeah, my first draft was very short: an intro, and then the "Person. Chair." thing a handful of times! **lol** With kids, they're naturally curious, which is fine, and if they talk to someone in a wheelchair and it goes well, they are more likely to be a grown-up with a clue.
ReplyDeleteOh, agreed! I should add something about that. I almost got someone's cart in my face last night. **sigh** The next time I update, I will add something about that, thank you for poking my brain! And less places would probably smell like ass if there were less asses in our faces!
Linked here from the FWD blog, and I love this post. :-)
ReplyDeleteI would add to the not randomly touching the wheelchair, the not randomly touching walking sticks. I've had people stroke my walking stick without asking me. Yes, it's a beautiful stick, and the handle is shaped like the head of a cormorant. No, that doesn't mean it's okay to touch it without my consent! I've also had people insist grabbing and moving it when I've put it down somewhere, and similar things. Not good.
Also, I don't think non-wheelchair users can be reminded too often that an adult wheelchair user is, erm, an adult. I had an excruciatingly patronising woman congratulate me when I'd walked up some stairs (and then resumed sitting in the wheelchair - my husband had carried it up the stairs), as though I were a five year old who'd just written my name for the first time. She'd never met me before. Fail. *sighs*
A couple of additions on touching chairs:
ReplyDeleteWith powerchairs never, ever touch or lean over the control without permission. A member of staff at a local supermarket did this before I could react and could easily have damaged the chair (the control was activated and I'm glad it was in the lowest setting). Really.
The touching the chair applies much more when in motion, when self propelling and people have decided I need help with a door as caused several scraped knuckles, one mildly sprained hand when my fingers got caught in the spokes due to a sharp turn with no warning and much more.
I know this is a subset of you don't touch the chair but I feel these two situations are of particular import as both can produce serious injury to person and/or device so should be highlighted.
I shared this on facebook and a friend has asked me to comment on it on her behalf:
ReplyDeleteHi. Thanks for this post. I've been in a power chair for a year now. I've generally found people treat me ok when they can see me, but I struggle with car drivers and bin men even though there are a significant number of people that use wheelchairs locally... The problem is the way people park across dropped curbs and block the pavement with wheelie bins. I've given up trying to go out alone on bin day, because whichever road I try, I just get stuck.
Is this a common problem, and do you have any tips for getting around it? Thanks.
@numberland - Agreed -- mobility aids should be "hands off" to all but the owner or designated helpers. I have busted up my hands on my manual chair when someone decided that I should go in a direction I either did not expect, or did not want.
ReplyDeleteIt seems that there is always someone out there willing to screw things up...
@Elly -- I have a really nice Lucite cane, and people can't seem to keep their hands off of it. I have on more than one occasion offered to use it as a cudgel, since it is tough and can be cleaned with a damp cloth. =)
ReplyDeleteI am sorry that people seem to be dense everywhere, but I am glad you liked this piece!
@yrieithydd -- Thank you for sharing the piece and for responding for your friend, that was very cool of you.
ReplyDeleteAbout the ramps: I can stand for short periods of time even when my balance is off and I am fatigued, so in the worst case I will get up to move the chair myself, although I will pay for it later. If I have the energy to be a pain, I will sit there and make someone get management, and illustrate to them that blocking the ramps/cutouts has serious repercussions for real human beings.
I got into a Facebook argument with a person that was all "chair users are SOOO entitled and annoying" and, well, I could not let that go -- she got an eyeful.
I really appreciate your post and you explain each and every point very well.Thanks for sharing this information.And I’ll love to read your next post too.
ReplyDeleteThanks for reading, and replying! I am working on some content. After being a little skittish over so much unexpected readership, and then seeing the horrors some other bloggers have experienced lately, I have been hesitant to get back to it, but I will!
ReplyDeletethis is all totally true especially the"Do not worry about your kids. They are going to ask, and that is totally okay. What is not okay is rudeness. Do not do it, and do not let your kids be rude. The person in the chair will set the limits for what they will and will not discuss with your kids,"part of the article
ReplyDelete@ani101 - Thanks for stopping by! Kids are always learning (ideally, anyway), and there is no better way to learn disability etiquette than from someone that knows what is what. So I always give some spoons and time to kids that want to learn, if I have them to spare. =)
ReplyDeleteThanks for making this info available. It is so important for people to NOT touch people's chairs. Some people have severe chemical sensitivity to many things including fragrance which is in almost every personal care and laundry product (including ones that say 'unscented' or perfume-free because they often contain "masking fragrance" not listed on the labels!). While many parts of a wheelchair can be washed, some parts will retain scent and actually have to be cut off and replaced if they are touched with scented hands. Please do not make people with limited incomes have to change parts on their wheelchairs unnecessarily. It is not so much the issue of maybe a $5 part, but then there is a service call fee of $40 or more as well as the inconvenience of being trapped with something scented making them sick!
ReplyDeleteThe no touching rule also goes for touching people's clothing as well. Get permission first!
It is ok to shake hands with someone in a wheelchair IF they are ok with that. Some people are immune compromised and do not want contact with those germs or they have chemical sensitivity and do not want to get sick from fragrance they cannot wash off. If a person says they do not shake hands, just leave it at that. Do not treat them like a freak or look at them like they have 3 heads. Do not think it is ok to then latch onto their arm with both hands or touch their chair just because they do not want to shake hands. If a person does not want germs or scent on their hands, putting it on their clothing is not any better. It can cause people with very limited energy to have to do more laundry when they get home (when they should be resting instead!).
You should not assume someone is "sick" because they are in a chair, but you should also not assume that they are NOT sick. Believe what they say and do not argue with them about their condition! If someone in a wheelchair has chemical sensitivity and starts to get sick, ask if they want help to get outside and then help clear the way for them to get outside to fresh air as soon as possible. The worst thing scented people can do is swarm in and latch onto the sick person in a bid to help because they are just making the person sicker. I have actually had people stand there and argue with me that they are not wearing anything scented and "it is just fresh laundry smells". When a person with mobility issues is getting sick from your scents, move away because it is likely harder for the sick person to get away from you while they are trying to grab their barf bag, gasp for air, and manage their wheelchair. This is really important: if someone says they are getting sick from your fragrance, back away and give them the space they need--do NOT stand your ground and argue the fact!
As for touching my hand when it is on my joystick, that is no more appropriate than touching someone's hands when they are driving and have them on the steering wheel.
One more point: when talking with someone in a wheelchair, do not lean right in and get in their face. Someone standing can take a step backward or turn a bit when their personal space is invaded. When someone comes too far into wheelchair personal space, that person is trapped because they cannot as easily back up and having people so close to the chair makes it more of a risk for driving over toes.
I love my power chair and the freedom it has given me. For the most part, people have been helpful and good to me. These positive experiences have outnumbered the rude and crazy ones, thankfully.
Wow, thank you for giving me a place to say this!
Thank you! Thank you!
Etiquette is very important. It should be taught to everyone. A person with the right etiquette is just so admirable.
ReplyDeleteEtiquette is rapidly becoming a lost art rather than a common skill.
Delete