Dear Captain Awkward:
I’m woman in my late 30s who uses a power wheelchair due to a medical condition that causes severe physical fatigue.
Often, strangers – retail staff, waitstaff, members of the general public – assume that because I use a power wheelchair, I have an intellectual disability. I don’t. I have a university degree and I read widely.
How should I respond to people:
– talking loudly to me;
– talking to me in a sing-song voice;
– being condescending/patronizing;
– calling me love/sweetie;
– telling me that I remind them of their 12 year old daughter with Down syndrome;
– praising me for putting rubbish in a rubbish bin as though I’ve won a gold medal at the Olympics;
– telling me that you eat cupcakes?
Smart Crip Girl
Ugh. Even if you had intellectual disabilities, the behaviors you describe would be creepy and condescending.
For people who talk loudly, try:
“Why are you talking so loud? It’s weird.”
“Holy shit, that’s loud.”
“You’re talking really loud.”
For people who use the sing-song voice:
“Why are you using that sing-song voice? It’s weird.”
“Did you mean to sing me your answer like a little song? Because that just totally happened.”
For people who call you love/sweetie:
“My name is ______ for people who know me, and ma’am for people who don’t. Let’s go with ma’am for now.”
For people who tell you you remind them of their 12-year-old daughter with Downs syndrome:
“Cool, is she also into (a thing you’re into)?”
I realize they are doing it to insult you and don’t mean it nicely, which is such an extra layer of gross that I highly suggest that you turn it around on them.
For people who praise you for doing basic stuff like throwing trash away and also for people who are generally condescending:
“Wow, that’s pretty condescending.”
For people who tell you about how they eat cupcakes:
“There are cupcakes?” (If you like cupcakes)
What you’re going for:
- Tone: Flat, on a scale between coolly reasonable and Fuck You.
- Response: Short.
- Apologies & explanations given: Zero.
- Fucks given: Zero.
To keep in your back pocket:
- “Did you really just say that?”
- “Fuck you.” Especially if they ask you how your junk works. Which is a thing that happens.
Sometimes if you do this, you will get the dubious joy of having people apologize at length, explain and overexplain what they meant, and if you’re really lucky, have a complete shamesplanation spiral in front of you. I suggest waiting it out and then coolly making your point as if none of that matters. “Sure. Can you bring me a grande iced two-pump soy vanilla latte please? Thanks.” You don’t have to engage with their shame or comfort them for their fuck-up, that’s their own work to do.
I’m sure the commenters will be happy to join us for today’s performance of Snappy Comeback Theater.
383 thoughts on “#487: I use a wheelchair, and people are condescending as fuck.”
So freaking excited for this thread. Partner’s sister is in a wheelchair (with a physical disability that affects her motor functions, including speech) and the way she is treated by so many people, including medical professionals, constantly has me wondering “What the everloving fuck?”
One behavior that is especially shitty is when people talk to me, or other people in the room, ABOUT Partner’s Sister (as if she’s not here), or ask me/others questions about what she wants/needs instead of asking her. I don’t have a particularly witty way of responding to this; I just do what Partner’s family does, which is very pointedly turn to Partner’s Sister and ask the question, word-for-word, and wait for her response. You know, like I’d treat any human being.
Salamanca, I’ve got to adopt the tactic of Partner’s Family. My in-laws have done this in the past, and the first two times it happened I was too shocked to respond. (They are a doctor and a nurse, respectively, so I was really not prepared for their Fail).
A friend of mine used to have conversations with himself when faced with this. For example if someone asked me “does he want an ice cream?” He would jump in and say “Simon, do you want an ice cream? Yes please I do. What flavour would you like? I would like the chocolate berry ripple. Do you want it choc dipped? Nah, not today. All right Simon, I’ll tell them.” And then he would give his order. The trick was to sit there without laughing as the server gaped at us.
Absolutely beautiful. =)
My best friend/former roomie is blind, and when we’re out and I’m not using a mobility aid of some sort, we get this all the time. My favored response to, “Does she want [bread with that/a cupcake/silverware/wevs]?” is a head tilt and a sweet, genuinely curious-sounding, “How on earth would I know?” followed by some variation on, “I suggest you ask her.” Relatedly, when she’s checking out at a store when we’re out shopping, I’ve taken to clearly indicate that I am NOT PAYING ATTENTION to the end of the transaction (by practically turning my back, checking my phone, etc.) because clerks would NOT stop trying to give me her receipt/change/credit card.
You could also try “I don’t know. Why don’t you ask her?”
in my book, nothing tops a well placed [long uncomfortable glance] [beat] [beat] wooooooooooooooooow.
I favor a variance of this that involves the long uncomfortable glance followed by “Okay” in a completely neutral voice. Repeat as often as necessary.
I’m a fan of, “What a remarkably stupid thing to say!” Delivered in a conversational tone, it absolutely floors people, especially when they’re expecting you to be grateful for their attentions.
I am SO using this! Thank you!!!
LW, I have motor impairments that mean I walk with a pretty pronounced limp, and I get the same assumptions all the time. The Captain’s list of what you’re going for is totally spot on. Since my most common problem is strangers concern-trolling me on the street (asking if I’m okay, sometimes repeating themselves), I usually just respond, “Yes, I’m fine,” as flatly as possible and hope they leave it there. Unfortunately, one lady in the airport decided not to believe me and turn around and stare at me several times. In the end, she said in the patronizing voice, “There’s the moving walkway. Do you like the moving walkway?” I responded coolly that I was taking the train, gesturing to the sign that says “Trains to [City I Live In].” Apparently proving I was literate was enough to finally end the encounter. I was really tempted to go off on her about how it was insulting to assume that someone with an intellectual disability can’t get themselves to baggage claim in an airport, but, you know, train to catch, not worth it, etc.
On the other hand, this week some lady who was asking if I was alright while I was walking to class listening to an audiobook actually apologized for bothering me once she realized I am an autonomous being with the right to ambulate in public unmolested. It’s the first time anyone has ever apologized for that. It’s my only happy story about that kind of situation, among about a dozen *headdesk* ones like those you describe.
Also, Captain, thanks for reminding me about My Gimpy Life. Unfortunately, my husband was the one asked if I “could have sex.” The person who asked him that decided to apologize by getting us a wedding gift. I have no idea which item in my house that is (or if we still have it), and I think I’m better off that way.
Oh God, I was in a relationship with a wheelchair bound guy for a while and I was stunned at how many asshats asked me if he could have sex. If I said “of course” they would actually ask me how he did that, the privacy violations…the only thing I could think of to say was “how do you do it?”
I’d be so tempted to start giving The Talk: “When two people love each other very much…”
@datdamwuf – YES.
@JenniferP – That would be awesome too ^_^
Oh Jennifer, this blog needs a like button 🙂 (not a dislike button, though, that’s just negative)
or: “Do you need some pointers?”
So, I thought of a hundred ways to answer your response and there is none that isn’t rather pornographic. Suffice to say, we were very compatible sexually but not emotionally and when we became friends, I became his wing woman for a time, at that point he told me how he wanted that question answered… 🙂
This, except I wouldn’t stop with the basic explanation. >8D
“And that’s when you get the jumper cables and car battery…by now the baby oil should be thoroughly spread over the body in an even layer, but you may want to wipe off a bit here so the clamps can hold on, you don’t want them slipping off…”
Keep going until the look of horror is reaching Code Red levels, or they explode into apologies and beg you to stop.
Me? Vindictive about people being condescending? Why, never!
OMG yes. Have gotten this a few times ever since I started dating my wheelchair-using ladyfriend. I tend to go for “enthusiastically” when I’m in too good a mood to deliver a “…….wow.”
Of course, most of the time people just assume I’m her carer, not her partner. Which is so strange- it’s lovely that I get to hold her hand in public without getting the kind of homophobic BS you’d expect. But it’s weird that that only happens because people read us in a completely desexualised way, so everything short of actually making out on the street is seen as me being a great & devoted carer. Yuck.
Unfortunately, the carer assumption happens if you are an opposite-sex couple too. People are dumb.
Yeah, not surprised.
But seriously. I’ve been a carer. Lots. And the way I act around people who I’m a carer for is, er, verrrrrrry different to the way I act around people I’m dating..
There’s always the River Song response:
Disgracefully. (With a knowing smile)
Oh, I like that one. 😀
*snickers* River Song always has some excellent comebacks, yes?
I was reading the other day about how society looks on womens vs men holding hands. Some lesbian/bi women were saying that although they feel that they’re practically screaming “hey, I’m gay and this is my GF” most people don’t react, vs the reaction to two men holding hands. They also had different experiences from wearing rainbow jewelry. When women did it straight people typically thought they nursed their inner child. And when men did it, the reaction was much more aggressive in your face. Do you share their experiences?
I’m sorry if I’ve used clumsy, wrong words, it’s not on purpose. I thought about girls in general holding hands, whether they’re gay or not, and I read your post and it came to mind. I hope I didn’t offend you somehow.
I don’t mean to threadjack, but I did want to say that it’s possible to get VERY different responses as two women together if one of you is visibly gender non-conforming (i.e. butch).
I once went to a new gynecologist with my girlfriend, announced that I have sex with women and sat there holding her hand while asking some questions about avoiding STDs, only to have the gynecologist answer with the explicit assumption that I was having exclusively PIV sex. I could not have been screaming “I’M GAY” more loudly and she still read us as straight BFFs or something. True story.
Also ditto what Molly Grue says about the different reactions one gets when one member in the couple is presenting in a gender non-conforming way. I tend to bounce from butch to femme depending on context and my mood and whether I did the laundry recently, and the reactions I get in public are very, very different depending.
Yeah, it does depend a lot. I find it also depends on age- when I was in my teens and early 20s, nobody batted an eyelid at me holding hands with other girls. We assume that girls & young women will be affectionate like that. Now I’m (just!) in my 30s (eep!), there’s more of an assumption of a certain kind of decorum, and it’s less ‘normal’ to walk around linking arms with friends.
I think it’s because how male and female friends behave with each other is viewed differently. If two girls are holding hands, have their arms around each other, or hug or something, that’s seen as normal female friend behavior. It’s viewed as normal for girls to be very touchy-feely.
Dudes, however, are not expected to be as physical with their friends, so if someone sees guys hugging or holding hands, it’s immediately assumed they’re in a romantic relationship, or at the very least behaving in a ‘girly’ or feminine way, and of course guy with feminine traits=gay, as far as the many bigoted are concerned. It’s why some have gone so far as to create tutorials for the ‘acceptable male friend hug’, to “deal with the awkwardness guys have trying to greet male friends”, which is stupid, but such is the world we live in for the moment.
Funny enough, I have a friend who is gay who gets this ridiculous question too. If I’m near him when it’s asked, I always like to reply, “Well, how do you have sex?” and then stare at them waiting for a reply. Interestingly, no one ever answers. Imagine that.
Oh wow. My mom has cerebral palsy and also walks with a pronounced limp. She gets a lot of stares and people concern trolling her too. It’s never been quite that invasive, but several people have told her that she shouldn’t be driving because they assumed she was drunk. A part of me wants her to sit these folks down and condescendingly explain what’s going on, but she’s absolutely not obligated to explain herself. People need to mind their business.
Urk to the assuming she’s drunk thing. I saw a car accident where a group of kids started yelling at the guy whose car they’d just hit and when he got out of the car and limped over to talk to them, exchange details etc, they really got in his face accusing him of being drunk because he didn’t walk ‘properly’. He pointed to the disabled badge on his car and explained what was going on but they didn’t care. We hung around til the police arrived literally because we scared of what would happen if there weren’t witnesses there. People can be horrible.
Or hell, he could even be limping because THEY JUST HIT HIS CAR. Which would be my assumption if I didn’t see the disabled badge.
I walk with a limp if I’ve been walking for a long time or I’m very tired due to a birth defect, and I am always kind of surprised at people. My favorite is “why are you limping?” I usually respond with something like “I walk with a limp.” Geez.
Captain, being picky about this difference might be a UK disability politics thing, but LW says “I use a wheelchair”, which is pretty different to me from “I’m in a wheelchair”. Most guidance here in the UK stresses avoiding “wheelchair-bound” and using “wheelchair-user” to emphasise that a wheelchair is something that enables people to get around, not something that restricts people or that happens to them.
“In a wheelchair” is kind of in between those two, and the LW might not care, but it jumped out at me. I’m not disabled, though, so I might be applying a good general rule too widely. Any wheelchair-users care to comment on that phrasing?
Cool, I will change the title. Thank you.
Thank you! Wheelchair user here happier with the phrasing of “use/r” 🙂
Sorry I didn’t get it right the first time!
This is one of the reasons I keep coming back to this blog. Acknowledging a mistake, fixing it, with no fuss and no problem about it, is so refreshing.
I spent about nine months in a wheelchair after a broken leg that took several surgeries to fix. I thought before that I’d been fairly knowledgeable about mobility issues since I’ve been a cane user for year. I soon found out how very wrong I was. I met all the same idiotic comments as the LW. And I also really understood the difference between wheelchair-*bound* and wheelchair-*borne*. The chair wasn’t something that restricted me; it was the thing that made it possible for me to move around and e.g. bring a cup of coffee to the computer; to actually get around to do my own shopping (after having taken a cab to the shopping centre, grant you, but still!), and so on. It wasn’t something that bound me, it was *freedom*.
*blink* Oh that was a penny falling on me. Thanks for that description, Bisatser; the difference between chair-bound and chair-borne is obvious and something I never clearly realized. I know I’ve got privilege here I haven’t unpacked.
+1 to the chorus of “this is why I love this blog.”
“Chair-borne” sounds wonderfully like one’s being carried along in a splendid palanquin.
Holy crap yes, I am fortunate enough to be able-bodied and it winds me the hell up when I see people do this. Why do some people assume that a physical disability is a mental disability? And even with people that you know do actually have a mental disability, why talk to them like that anyway?
This is a particular bone of contention for me at the moment, because my 90-year-old grandmother is very ill in hospital, and dear sweet Eru there are some nurses that should not work in geriatrics.
Stupid nurse: “DOOOO YOOOOU WANT A CUP *makes drinking gesture* OF TEEEA, LOOOOVE?”
My grandmother: *death stare* NO
I mean, she fought in World War Fucking II you ignorant bint, don’t you dare speak to her as though she has the cognitive abilities of a sea urchin. Being confused and old and frightened doesn’t make her a not-person.
My grandmother is 94 and her health is finally failing her so she’s been in and out of hospitals a lot lately. She looks (and is) extremely frail but her mind is still sharp as a tack. Seeing nurses talk to her like she’s senile, or having them talk talk to any of us in the family as though she’s too slow to understand her own condition or care, is absolutely infuriating.
I knew a woman who was practically a grandmother to me as a kid, and even well into her 90’s she was tending her own ranch, taking care of goats and cattle. I and her grandson (I often called him my big brother, he seemed like it a lot of the time) would help out often, of course, but she shouldered most of the burden herself. If some nurse had DARED to speak to her that way, she’d probably throw a goat at them! Age or physical disability does not a simpleton make. Why is it so hard for people to show respect?
My mother used to get very upset at the staff in the nursing home where my grandmother lived, because they called everyone there by first name even though the residents grew up in a time when you always referred to people as Mr. or Mrs./Miss Lastname. It was as if suddenly they didn’t deserve the respect they’d received all of their lives.
As someone who works with people with learning disabilities, I am baffled that people speak to the LW in this way because they think LW might have one. I have been trained always to call a person with a learning disability by their name, and to speak to them the same way you’d speak to most people. If they don’t understand, it’s almost certainly not because they didn’t hear you – it’s probably because you’re talking too fast or using complex words – so shouting at them will achieve nothing, except maybe upsetting them. If someone is no longer a child, it’s really not OK to treat them like one, regardless of how they present.
I’m not at all surprised. My little sister has severe dyslexia – which is to say she has extreme difficulty reading and writing, which is not at all the same as what people think of as a mental disability, but that’s another rant – and the professionals who work at the Learning Skills department at her school are always super condescending to her. They don’t offer to read her the complicated legal documents she has to sign to get accommodations, of course, but they talk down to her and put all kinds of barriers between her and what she needs. I had to basically threaten them with the spectre of legal action just to get her an appointment to see them (over halfway through the semester, after she’d had multiple midterms) and they tried to convince me that she’d lied about having tried to contact them. They’re massively incompetent at their work, but they still treat her like an inferior. (Meanwhile the Disabled Students program is actually quite good and its employees treat her like a human being, so of course she’s not allowed to go through them.)
I’m not surprised either, I’m afraid. I volunteer with a group that teaches riding to people with physical and intellectual disabilities and a LOT of the volunteers start off doing the things the LW lists. Thankfully most of them stop, but it happens a lot.
Do you think you might suggest to the organization that they offer some training (mandatory, even) on the ins and outs of interacting with PWD? I had to do that before I volunteered at a rehab centre. Things like appropriate language, putting ones self in the shoes of others, etc.
We don’t really have the resources for that, unfortunately, but you’re right in that the current situation is not great. Normally we try and lead by example, and then funnel people who don’t catch on into roles where they have less interaction with the riders.
Working with limited resources is always hard. When I worked the IT help desk at a university, we used to make a do/don’t sheet for start-of-year temp employees to read over, because training resources were scarce at the time (and focused on incoming first-year students). I don’t know if that would work in your situation, but thought I’d mention it in case.
Capt Awkward has provided some awesome external scripts (and I’m totally tattooing them on my eyelids.)
From my own 20 years’ experience with a powerchair, here are some internal scripts I still struggle with:
I’m not responsible for educating anyone
It’s ok to be an “angry cripple” when someone makes you angry. (I don’t have to tolerate concern trolling in order to demonstrate that people with disabilities are polite.)
Dealing with inaccessible environments is exhausting. When I can advocate for better, that’s great. When I can’t, that’s OK too. I don’t have to advocate all the time.
When people ask me why I use the chair, I generally respond with “That’s a long and boring story. How about those Mets?” or whatever digressive topic changer pops up. It’s my choice who knows the details.
Sometimes people ask because they’re dealing with getting a chair for the first time (and have no clue how to phrase the question). In that case, I’ll leap ahead to “Why do you ask?” If it’s nosiness, they have no good response. If it’s “my sister has $foo and is looking for a powerchair” I am happy to share what I’ve learned over the years.
That sounds like really good advice.
I’m TAB, but I have a weird undiagnosable auto-immune disorder that caused me to need a cane for a short period of time in my late teens, although my pain wasn’t consistently bad enough to require it regularly. I often got asked why I didn’t use my cane every day, and I was even accused of “faking it” since if I didn’t need a cane every single day I must be a lying liar. My go-to phrase was “wow, what a rude thing to say!” in a pleasant but surprised voice. As if I was surprised that such a rude thing would actually come out of such a presumably lovely person’s mouth.
Similarly, I’m quite fond of pretending not to hear rude things, and instead saying (pleasantly!), “sorry, what was that? huh? sorry, didn’t catch that, come again?” repeatedly until they either realize their rudeness or just give up. This works great for rudely personal questions, racist comments, and anything else that people really ought to know better than to say in polite company. Perhaps they come away from the conversation thinking I’m a jerk or stupid or deaf, but the point is that they stop.
A few years ago, my wife had to use a cane quite regularly due to plantar fasciitis. (It’s been treated and she doesn’t need it now.) People were extremely rude — she said that it was like she had suddenly become even more invisible (we are both fat people, so we are already somewhat invisible). But the way people would act as though she were not even there was really upsetting.
She also got the “you’re too young to need that/you don’t really need that” speech at least once that I recall. Although (Jesus HARRIET Christ and her magic bag of rabid badgers with bucksaws) I really HOPE no one is enough of a complete and total ass to say that to a wheelchair user. (But I have little faith.)
She perfected a paint-stripping glare, although I myself favor a dry and vicious, “I cannot IMAGINE why you think anyone would do this for FUN.”
Aw, yeah. I was at [huge sci-fi con] one year with a friend who uses a chair for severe JRA. Some @sshole walks up to her, stares boldly at her legs, and says loudly, “SO if you’re in a wheelchair, why aren’t your legs all shriveled up?”
In my fantasies, I’m together enough to rip off his con pass and take it straight to con security, demanding that he be kicked out. In reality, we both gaped at him like concussed goldfish until my friend finally said, in dead flat tones, “Because I’m not paraplegic.”
As a fellow JRA (or as my surgeon calls it, a Rheumatoid, which I find has a certain video game character flair) this makes me Hulk Smash. What an asshole!
WOW. What a shrivelled microcephalic megaosculum.
When I used a cane, I got told I was too young to have it every couple weeks. i’d very pleasantly ask, “Oh, how many years do I have to hobble around in pain for before I’m allowed?” which people tended to wisely translate as “fuck off and die” and get offended by. “I was just ASKING!”/”I said it because you’re so pretty!”
Hint, folks: PWD get accused of faking or denied accommodations so routinely, “You don’t look disabled” isn’t a compliment, it’s an attack.
Oh, I got that. This one older friend of the family cornered me at an event when I was about 15, and kept insisting it was “impossible” for me to have RA. It was so frustrating, because I knew I had to be polite to him, since he was older, etc. But I hated the fact that he was practically accusing me of lying about having a painful illness I had been dealing with for years.
Yeah. I used a cane occasionally for about two years in my late 20s/early 30s and just ended up quitting using it because the additional mobility and pain relief was not worth the emotional distress of those exact comments; I decided that until the condition got bad enough that I had to use it all the time, I just couldn’t cope with it at all. Although my condition has indeed gotten worse in the years since, and my don’t-give-a-fucks has gotten stronger, I’m not back to that place yet. The idea that anyone should have to pick their battles in that way, ever, is horrifying.
Ugh. I hate it when people do that. I also hate going for a night out and having very very drunk people point out the fact that I’m using a cane… Do they think that I will be f*cking surprised?!?!
I quite often have to ask club bouncers if I can sit at the front of the queue until my friends get there, some are total tossers about it and assume I’m trying to skip the queue. Some have let the whole group of us go in though which is lovely ^_^
When I first became disabled, a woman at a nonprofit assistance group said to me “We don’t like to help people your age, because we think young people should be working.” Not exactly, the same thing, but similar. What, young and pretty people aren’t disabled?
Ms pris, did you call someone? Because, depending on the circumstances, what you’re saying they said sounds like it has a high likelihood of being illegal discrimination if they were denying you services. Many state’s have human rights commissions who can at least tell you your rights and are free to call, and most have other organizations as well that are free and focus on discrimination and disability issues.
The weird thing I’ve found when using a cane (my knee cartilage is a mess and some days I limp badly) is that it gets totally ignored. I don’t mean just “not getting idiots making horrible remarks,” which is obviously good, but “able-bodied person (usually a man) coming up stairs stares blankly expecting me to move aside for them when I have 1) a walking stick and 2) am holding for dear life to the rail”. Seriously, is it so hard to process “this person is less mobile and might be in pain, give ’em room”?
Oh, “you’re too young to need that”. It’s like they’ve never heard of conditions you’re born with, childhood injuries, degenerative illness, etc. I have my cane for injuries I got doing gymnastics in my early teens. Not EXACTLY something only older people can have.
THANK YOU. Man, that makes me angry. Like someone can’t be born with a problem, or get one as a child? I’m in my early twenties and I have arthritis and my left leg and hip messed up from an accident with a horse, and sometimes I have to wear a knee brace to help stay on my feet, because it really hurts. I get people asking me what happened or if I really needed it all the time, because I usually try to go without it. Just because someone doesn’t use it at ALL times, doesn’t mean they never need it! Some times are just worse than others, and age has nothing to do with whether or not you need assistance sometimes.
That’s discrimination, and I’m pretty sure you can get them in trouble for that.
YOU WOULD THINK, wouldn’t you. But, er, no, people I have got the “you shouldn’t be in that wheelchair” line from? Include my consultants.
The only adequate reply I can think of to that involves eye-lasers. Unfortunately, they have not been invented yet.
My partner usually uses the powered carts in the big box stores. He’s gotten ‘your too yuong’ comments a few times, as well as frequent glares from senior citizens at the young and obviously healthy person taking up one of their carts. Well he wouldn’t be so ‘obviously healthy’ is you saw him trying to walk!
Sadly, the ‘your too young too need…’ BS goes beyond random idiots. We know multiple people whose first applications for disability were rejected because they were too young. WTF!?
People have told me I look too young and healthy to be “in a wheelchair” for 20 years now.
Kevin Smith (who is not perfect, but I love that he does this) in his lectures and Q and A sessions, will pretend not to hear rude, awful comments, too. He says, “I’m sorry, what was that? I didn’t quite get it.”, with perfect sincerity and not a hint of snark. The rude person, almost without fail, cleans it up the second time, and then he calls them out with, “Oh! I thought you said [rude, terrible thing].” I love it! He has it down to an absolute art!
Oh that is amazing 😀
I also like using “Huh, why would you say that?” if a person tries to crouch an impolite comment in vague terms.
It has the same effect of as the “Sorry, come again?” in that when you actually make somebody repeat a rude thing they said or explain it in explicit terms, often they realize that you are not going to welcome their comment and they are not too keen on actually owning it.
Oh, I recognize that. Not really for myself (though my invisible disabilities have been described as “laziness” even by educated health personnel), but a friend of mine has arthritis, and uses a cane regularly. Some days, however, he’s so bad he can barely walk within his apartment, let alone go out and get himself to work. He really needs an electric wheelchair for those days, and to have as an insurance, so he knows he HAS one for the bad days. But he’s told that because he doesn’t need one every day, he doesn’t need one at all.
Actually, thinking back there was one very brief incident when I badly sprained my ankle in elementary school after being run over by a bicycle. Not wanting to be a bother, I forced myself to walk normally (or as normally as I could) the rest of the school day, despite the pain, but after that mum took me to the health centre where I got bandaged up and got crutches. And the next day I lived through hell, as EVERYONE had to comment on how much of a faker I was, because there had been nothing wrong with me the day before. -_-
That logic is mind-bogglingly absurd. Somehow I don’t think these people would apply the same logic to things able-bodied people need to stay healthy:
“No, you don’t really have hayfever — you didn’t even sneeze once last week.”
“Well, you didn’t need snake anti-venom yesterday, so I fail to see how you could possibly need it today!”
In fairness, saying “you can’t have a chair because we can only afford so many and we judge that this other person is likely to get more use out of it” would be reasonable, because it recognises the need and the failure to accommodate it. But telling someone what they do and don’t *need* is just plain bullying.
“I’m not responsible for educating anyone
It’s ok to be an “angry cripple” when someone makes you angry. ”
This. You’re not responsible for other people’s reactions when you’re reacting to their ableist BS. My mother has multiple sclerosis and when she’s asked other people to be patient with her (e.g., while she’s stowing her crutches on a plane or public transit) total strangers have told her to “stop feeling sorry for herself.” The fact that this kind of nastiness just comes out of left field shows that it’s based on the ableist’s preconceptions, and no amount of niceness on her behalf is going to change that. They have this pre-existing idea that people with disabilities are self-pitying and they’re looking for evidence to support that. Playing nice isn’t going to convince them that PWD aren’t lazy and spoiled, so why bother?
Re the okayness of being an “angry cripple” … I’m surprised no one has posted this article yet. It is fabulous.
I hear what you’re saying there, as a person with a spinal injury that uses a wheelchair and or walks with a crutch (depending on the day), it’s a rare day out in public when not asked “what happened to you?”. My standard reply over the past couple of years has been “It’s a long story, how many hours have you got”, if that doesn’t put people off then then next reply is “It’s just the way I am” whilst smiling 🙂 (if having a good day) it’s amazing that people can still want to get an answer, and be nosy.
I’ve seen this happen to a friend of mine many times, and her responses are similar to the ones the Captain suggested. You might also consider cultivating a skeptical eyebrow and withering glance to really drive home your meaning 🙂
I… what is the cupcake thing? Is that just an infantilization thing or is there something about cupcakes and wheelchairs that I’ve missed?
Oh, I know this one! It’s an infantilisation thing, but also an extremely confused attempt to find common ground for small talk. Like “Oh no, she uses a wheelchair, she won’t understand it if I talk about the weather or sports, I’ll have to… oh, cupcakes!”
I’m not mobility-disordered, but I used to get really bad laryngitis every year, and would communicate with pen and paper and improvised signs. Strangers would assume that I had an intellectual disability, and their attempts to find common ground for conversation were… well.
Security guard escorting me through a dangerous part of the university at night, a propos of absolutely nothing: “My brother in law is a police officer. Po-leeece-man?” Um, okay? Good to know.
Ah. I was envisioning them offering the LW a cupcake and explaining that it’s something you’re supposed to eat. I’m not sure if this is better, though.
I interpreted that as people actually explaining to the LW that she should try putting the cupcake in front of her in her MOUTH because HEY did you know you can EAT those? But I’m thinking I may be over-negative there since everyone else seems to be reading it as a kind of bright, force “I LIKE CUPCAKES AREN’T THEY NICE” response. (I hope so. That’s still bad, but not quite as awful.)
Hi carbonatedwit, LW here. ^_^
The cupcake thing: I was buying a takeaway coffee from a coffee shop near the State Art Gallery.
Coffee shop clerk [young woman in her early 20s]: Would you like a free cupcake?
Me: No, thank you.
Clerk: It’s free.
Me: No, thank you.
Clerk: It’s made with flour and water and sugar and eggs.
Me: No, thank you.
Clerk (in tone of voice someone would use to an especially stupid three year old):
It’s a cupcake. You. Eat. It.
Me: No thank you!
What. The. Fresh. Hell.
What the actual fuck? What would ever possess any person to do that to any other person?
Wow, what in the world?!
Oh man, I’m so glad I wasn’t the only one baffled by that. I read that and was just, “…the fuck?”
It’s as stupid as shouting at deaf people. I worked with a blind wheelchair user. That attracted like triple the dumb comments right there. I occasionally helped him by narrating and going by people’s reactions you’d think I was an angel for doing that. Gah. He’s pretty witty and quick to voice his opinions and in fact can be kind of an asshole about some things, so unwelcome comments were swiftly met by his sass. Why is that, btw, that so many people have the idea that all wheelchair users are saints?
Anyway, what he did when people ignored him was to remind them that he was down there, right here lady and he understands just fine. What I did when people asked me questions clearly meant for him was to ask them to direct their attention at him. Seeing as he’s a person and all.
I have a friend who uses a power wheelchair when she needs to. She has dogs and told me that people either react by thinking she’s the cutest thing on earth when she comes rolling with two big, fluffy dogs or the worst dog owner ever. Of course, the same people who think she’s such a terrible owner can be the same ones that praise her for winning a dog competition the days she has enough spoons to run around. Her way of coping is saying a quick “thanks” or a “not your business” and getting someplace else.
As a person who would love to address blind people with the respect they deserve, how do I let them know that I am talking to them directly? If I know them by name, then obviously addressing them by name would do the trick just fine, but what if I’ve never met them before? If I’m a shop assistant/member of the public who wants to ask if he or she needs assistance if they look like they need it?
Touching them lightly on the shoulder might do it, but I don’t want to invade personal space – some people don’t like to be touched by strangers.
Would appreciate some pointers from someone who would know. Thanks. 🙂
Great big NO on the shoulder touching. Blind people get touched a lot. My off-the-top-of-my-head recommendation would be, if the person is standing still, square up to hir at a 90 degree angle (meaning that you’re essentially looking hir in the ear), at whatever counts as appropriate conversational distance where you live, and then speak in a normal tone of voice and volume. The squaring up means that your voice is directed straight at the person, rather than going off at an angle.
Caveat: this response is from a sighted person.
Hey Lauren, I have a few blind friends and most of the time if they need help they ask for it, unless you feel like saying “hiya there, sighted friendly person here!, need some help? :)”
For the yelling folks: Motioning for them to come closer to you like you’re going to whisper something, and then talking back equally as loud, “I CAN HEAR YOU JUST FINE. YOU DON’T NEED TO SHOUT.”
Also, “IS SHOUTING YOUR PREFERRED FORM OF COMMUNICATION? I GENERALLY USE MY INSIDE VOICE BUT I’M FLEXIBLE.”
Another shout-y one that bothers me is when people do that when the other person has trouble understanding due to a language-barrier. Yelling does not increase language comprehension!
Man, so much this. Many people mistake volume for clarity. What’s really needed when you’re speaking to someone who doesn’t speak your language well is enunciation. I’ve known people who could mumble at high volume, and they were much harder to understand than people who spoke slowly and clearly just above a whisper.
Big YES! to enunciation and projection. I have fairly significant hearing-loss in one ear, and until such time as I have several thousand dollars lying about to get a hearing aid (hasn’t happened yet, and it’s been this way for 20 years), I get annoyed as hell with people who mumble, or speak so rapidly that you can’t follow them. I will ask someone to repeat something twice, and then I’m done trying to interpret what you said. I am also a fan (ha, I love you, sarcasm!) of people who make a habit of speaking to the known-to-be hearing impaired either from another room, or with their back or face turned away. As though you’ll respond back correctly one day and they can say ‘gotcha! knew you’ve been faking it!’ ?!? Admittedly, yes, I understand their frustration, too, but it doesn’t sound like people behave any better around the folks whose health issues *are* actually visible.
I especially love the perfect storm.. The fast, low, mumbler!
And yes! Eeeenunciate! My boyfriend asked me once, in frustration, after I had to ask What? about four times in a row if he should just yell everything at me. I looked at him calmly and just said “No, but enunciating would help a LOT.”
He seemed to get it after that.
My hearing difficulties are more auditory processing than sensory loss, but yes so much to the thing when people talk to my back or from another room. I’ve misheard you every single time you do that, why do you keep doing it? (I often just smile and nod at work and then ask someone else what I was agreeing to do, which is not the best system.)
I get that sometimes we just say, “what?” but it’s helpful to state clearly what the impediment is, or what would be helpful. “I can’t hear you when you talk into the wind.” “Can you try rephrasing that?” “Sorry, but I need you to speak more clearly, not more loudly.”
Yiiiiiikes. Also there’s that thing where people who do shit like talking to you from another room or with their back turned are apparently forgetting your hearing loss, over and over again (Unless, as you suggest, they are testing your hearing, which is SO MUCH BULLSHIT I CANNOT EVEN)? Like, that is not something you should have to REMIND someone of, once you’ve told them.
AH, the talking in the wrong direction thing! I have mild hearing damage that makes it difficult to understand speech when there is a lot of background noise. My last boyfriend was a foot and a half taller than me, and when we were walking side by side he would CONSTANTLY talk straight ahead instead of turning to face me. I regularly had to ask him to repeat himself more than once, and he would get upset at ME for not hearing. Even though I told him exactly why I couldn’t hear him many times, he didn’t learn in 2 1/2 years. Some people are just stubborn or dense.
When my sister was taking eighth-grade French, a French exchange student her age came to stay with us for a few weeks. My mother kept YELLING AT HER to communicate. I reminded her several times that this wasn’t going to help the student with comprehension.
I still have no idea why she did this. My mother is not a stupid or condescending person. Somehow she was wired to assume that loud = more understandable.
This. And the people who assume you don’t speak (local language) because you LOOK like some kind of foreigner, and therefore are too stupid to speak (local language).
However these problems are not the same as what the letter describes, except in the loose “dealing with assholes” sense.
When I was in grade 12, my school hosted a bunch of French students. I was billeting one and they were going to a hockey game. “My” student begged me to come along, so I did…and she promptly ditched me to hang with her friends. On the bus on the way to the arena, one of the French guys sat down next to me with a huge shit-eating grin on his face and said, “T’as d’excellents poumons!”
Those of you who run that through Google Translate are going to wonder why he was complimenting my lungs. That’s not what he meant. I wasn’t quite quick enough to give him a snappy reply, like “Ouais, ils sont pas mals” but the expression on my face was enough to make him quickly realize that just because the Canadian students spoke English amongst ourselves did not mean we didn’t understand them.
Or what’s even worse is what my dad does: goes to Spain and instead of speaking Spanish or even just speaking normally in English (as most people who work with tourists understand that) he speaks English with a strange “Spanish” accent. I am so glad I’m an adult and no longer have to go with them and witness this.
“WHY ARE WE SHOUTING?”
“DO YOU ALWAYS TALK LIKE CARL ON PARKS AND REC?”
I’M SORRY I RAISED MY VOICE, I JUST GOT UPSET FOR A MOMENT THERE
One could also try, in one’s best schoolteacher imitation: “Inside voice for inside spaces!”
Assuming, of course, one wasn’t outside at the time.
I am dying with laughter here. Thank you!
“I CAN MAKE LOUD NOISES TOO. SEE HOW LOUD THE SOUNDS FROM MY MOUTH ARE? WE CAN BE LOUD NOISES BUDDIES!”
Of course, that might just encourage them…
Heh. Especially if you’re talking to the Simple Dog.
I’ve actually had to interject this during family discussions.
Also, “IS SHOUTING YOUR PREFERRED FORM OF COMMUNICATION? I GENERALLY USE MY INSIDE VOICE BUT I’M FLEXIBLE.”
This made me laugh so hard that I’m literally wheezing and crying. Thank you!!
I have suggested this before, I think, but a good all-purpose response to a WTF-did-you-just-say to me? comment is “Wow, that was really rude. You must be so embarrassed.” If they weren’t before, they are now…
On the other side of the coin, there was a lady in one of my classes a few years ago with a motorized wheelchair. She told me a story of how she’d just finished in the restroom and gotten back into the chair, but one of her feet slipped off the footrest and she wasn’t able to get it back on her own. She asked another student for help moving her foot and the girl snapped back “You should learn to be more independent.”
Oh you’re right! She’ll just levitate on out of there! GJ you solved it!
When someone asks “What’s wrong with you?” I like a slightly disgusted stare and retorting, “What’s wrong with YOU?” Aside from that one, sadly I never seem to think of witty retorts until some hours later.
I don’t have a physical disability but I do have an unusual vascular condition which means about 70% of my skin is visibly red or has large red/purple blotches, and I have heard that query more times than I can remember. These days I mostly deal with disgusted/startled stares rather than comments (which I respond to with glaring), but I used to use that answer quite often. I don’t enjoy the stares but they’re definitely an improvement on the bizarre and ignorant things I used to be asked, especially as a child/teenager by peers. ‘Do you have AIDS?’ ‘Will I get sick from being in the swimming pool with you?’ Ugh. My sympathies to you, LW.
Looking over that, I worry that I was unintentionally thread-jacking. I am sorry. My issues aren’t analogous, aside from being asked invasive questions by arseholes.
I don’t think that was thread-jacking – many sympathies on having to deal with invasive questions from arseholes! After reading this thread I will never again complain about having an invisible disability…
You’re entirely entitled to complain about a disability, visible or not! I would hate to think my example made you feel silenced, especially because my condition doesn’t disable me at all. It’s almost entirely cosmetic, with a side order of increased risks around blood clots (which I’ve never suffered). And in winter no one can even see it, and I get treated like a ‘normal’ person. It makes summertime a little bittersweet, is all! I hope your experiences of your disability are not marred by jerks. Jedi hugs!
You are a much better person than me if you’ve never responded to “Will I get sick from being in the swimming pool with you?” with, “Yes. Run now, before it’s too late.”
Bonus effect: Pool to yourself. Ahhhh…
I have been known to respond with sarcasm on occasion. I told a nosy classmate once that I had eaten crayons as a child and this was the result. I might have given her a complex about crayon toxicity because I discovered later that she’d missed the sarcasm entirely. It probably is best not to eat crayons though, so no harm done?
You are hilarious and a delight.
I can’t nest another comment under yours, TheSnarkyB, but thank you – you’ve made my day 🙂
I fell off my bike once in high school and sustained a ginormous scary bruise on my leg. At some point before it faded, a girl in the locker room gaped at the bruise and asked me if I was born with that.
I kind of stared at her and said no. Then I felt bad that I hadn’t lied and told her I was. Because that would’ve make her feel stupid for asking, right?
If these comments are any indication … nope. She probably would’ve said, “Oh, so what’s wrong with you?”
People are morons.
Yeah, sometimes people say stupid things. I can think of one example when I was the one saying them — I ran into a coworker in the office kitchen and noticed that he had what looked like large scrapes on both legs just above his socks. (This was obvious because he was wearing shorts.) My immediate response — “Ouch! Did you fall? Or is that a sunburn?” — was prompted by empathy, but it sounded nosy as FUCK, and I realized it once he looked at me oddly and said “uh, no…”. I think I may have apologized, but it honestly took me a couple days before I came to the conclusion that they might have been sores due to diabetes. (I don’t know whether he has diabetes, and it’s not a topic I’d discuss with a coworker, but I’ve since seen him with bandages over the spots, so it’s an ongoing thing.) I felt like a real jerk.
I have eczema (along with a whole list of other chronic illnesses that put me in the land of being invisibly disabled) and people are awful about it. When I was in elementary school, every few month some new boy would figure out the oh-so-witty quip of “ew, are you infectious?” even though they all knew I wasn’t. I eventually just started saying yes, chasing them across the playground, tackling them, and rubbing my rashy arms all over their faces.
Unfortunately, when I was about eleven, I went through a period where people did think eczema was infectious. That was not a fun month.
“What’s wrong with you?”
“Somehow I’m a magnet for assholes.”
My mom has an artificial leg, and it’s made me both more aware of how people with disabilities prefer to be treated, and one of those annoying nosy people. I recently got into a twenty minute conversation with a veteran about the pros and cons of a c-leg while shopping for mattresses. Once he figured out that I was genuinely curious from a place of some knowledge rather than just gawking, we totally held up our (bored-looking) respective partners and salespeople. (it boiled down to him saying she should give them another look, they’ve come a long way since they came out, and me saying that it’s hard to afford when insurance doesn’t like to cover replacement mobility aids when you’re dealing with a birth defect. we would’ve tangented into insurance woes if my bf hadn’t pulled me away)
Her attitude by the way is to teach the children (including telling their parents it’s ok to ask questions if they are shy) if she has the time, and pull from a long-built-up repertoire of one-liners for adults.
Another assistive tech geek here: given that there’s so little comparative information available, I totally support your right to bore mattress salespeople. Significant portion of assistive tech — wheelchairs, prosthetics, braille notetakers, computer-based voices — is purchased by insurance company (or schools). $insert-US-healthcare-rant-here. How well the device fits our needs is sadly not the #1 concern of insurance company, and there is nothing like “Consumer Reports” or “Motor Week” to guide our choices.
A former boyfriend’s mother had only one leg (cancer). She said that once she was in the pool, swimming without her prostetic leg, and saw someone staring at her missing leg. She looked him in the eye and dryly said:
‘Be careful, there are sharks in here.’
I have a friend who uses a wheelchair, and sometimes when we’re out shopping people will lean over her to get things off a shelf instead of asking her to move please, or even use the back of her chair to brace themselves as they reach for something high up and I kind of feel like saying to these people ‘This is my FRIEND. This is not a piece of FURNITURE’ but I am shy and so I don’t say that. But I should! It’s especially irritating because I’m super short, like, people could reach over my head without even stretching, but they don’t because that would be rude, so why do they feel it’s okay to do it to her?
I also loathe being treated like furniture! And, I find that if I’m in a queue or a crowded space, people always act like I’m “in the way” no matter where I am, while other people who take up space too are treated as if they have a right to be there.
To the LW: it is possible that their 12-year-old daughter with Down syndrome will also go to university and read widely. That is a thing that some of them do.
That really bothered me about LW’s letter too – having an intellectual disability, developmental disorder or mental illness doesn’t AT ALL preclude the possibility of being smart, well-read, an accomplished student, et cetera. Or of generally having a vivid and busy and interesting life. I can see how it can be irritating to have one’s disability conflated or confused with another for no good reason, if only because it’s wildly incorrect and rather baffling in most cases (and, yes, is taken as an invitation to be patronizing and intrusive). However, as a markedly neuroatypical person himself, I’m very curious as to what is so shameful or inherently damning about being mistaken for or compared to someone with an intellectual disability.
I think it’s the fact that it sounds like the go-to. Bizarrely, LW never reminds people of their brother-in-law with the collection of china cats, or their work friend with the utterly fantastic hair. She only has any similarities at all to other PWDs, with completely unrelated disabilities!
Which I think is potentially insulting to the referenced person also. Not that there’s anything shameful about having Down syndrome OR using a wheelchair, but that all people who have any of a wide range of issues are put in the same box.
Like telling all black women that they look “just like” Oprah Winfrey. They really don’t.
And there’s the fact that the daughter with downs syndrome is twelve. She may well go to university etc at some point, but – like the majority of pre-teens with or without disabilities – is unlikely to be doing so now. And also, LW is being compared to a child, so it’s kind of in the cupcake category.
I’m not handicapped, nor is anyone around me, so I don’t have many opportunities to learn the common pitfalls. Thanks for sharing your stories! I can think of a couple of times in the past where I now know I overstepped the bounds of politeness, so I’ll be avoiding those in the future. Thanks!
Protip: Most of us prefer not to be referred to as “handicapped”, as the word has a historically negative connotation.
Many people use “disabled person” (more UK/Australia) or “person with a disability” (more US), but obviously individuals may have different feelings on the matter. I use PWD when I’m speaking in general, and listen to/ask how someone identifies themselves to speak about an individual.
Me, I say I’m disabled or I have a disability. 🙂
And this is why I need this thread. Thank you! I’d edit the original if I could.
Ugh. It has been my mission at work (I work in a public library) since we moved into our lovely new ADA-equipped building four years ago to get my coworkers to quit referring to the access buttons on the front door as “handicap buttons”. 1.) It’s not just people with mobility issues who use them, they’re also awfully handy for people with strollers or both hands full; and 2.) handicapped is not a word that culturally competent people use anymore, can we please not be assholes to our patrons, kthx? I’ve even explicitly compared “handicapped” to “Oriental” as a word that has fallen/is being encouraged to fall out of common usage for very good reasons, to my boss, who is relatively race-savvy, and she still does it. *sigh*
Part of the problem, I think, is that in an institutional sense, “handicap[ped]” is still common usage–“handicapped parking spots,” “handicapped bathroom,” “handicapped symbol,” etc. It’s harder to convince people that this is not the preferred term when our governments and other institutions (in the U.S., at least) are still using it.
YES. This is exactly the kind of thing I’m trying to combat by signal-boosting “access/accessible” in a public institution context. Which are actually the proper terms in ADA and OSHA documentation, it’s the spoken vernacular of public facilities that’s slower to change.
I should also clarify – I thought of this as I hit “reply” – that I do know that usage changes filter through public consciousness inconsistently, and my bar-of-expectation for trained professionals working with a diverse public is higher than for people in general. I’m far less judgmental about, frex, Flyby’s usage (especially given zir prompt response to the explanation) than my boss’s, given that she has graduate degrees in library science and social work for fuck’s sake.
(and still catching the old username in saved browser settings on various computers. oops.)
I sometimes call it a ‘wheelchair button’, since that’s the icon on it – is that likely to make people flinch as well? ‘Door button’ does work just as well. (This is usually in the context of trying to move percussion equipment into/out of retirement homes for orchestra performances. Tympani aren’t a disability, but trying to move them around does teach you something about designing buildings for accessibility.)
You know, from a facilities management perspective I’m really focused on promoting consistent use of “access button.” It’s precise, it’s neutral, and, as you point out, many people need access assistance for a wide variety of reasons. “Door button” is perfectly neutral and descriptive, too!
I can’t speak to how wheelchair-borne folks would feel about “wheelchair button.”
Oh goodness, I knew not to use “handicapped” to refer to people, but I hadn’t even thought about it in relation to parking, buttons, etc.
Learning things! From this blog!
Good call on comparing it to “Oriental,” too — that’s one I was already familiar with, so I know that wince, so – yeah, good visceral reaction there.
Yeah, I don’t know why but although I’d never use “handicapped” to refer to a person I have to make a big effort not to say “handicapped parking/button/stall/etc.” The only thing that’s been able to replace that phrasing is “accessible,” which is more accurate and descriptive anyway. But it took a while. Chagrin!
I have a relatively temporary mobility disability – one that will hopefully be fixed with surgery within the next year – and so I have gotten a placard from my local county tax office (that must be renewed every six months) to hang from my rear-view mirror and which allows me to park in the spaces closest to a retail establishment that are designated by a blue rectangle with a white “person sitting in wheelchair” icon inside the blue.
Everyone from my multiple doctors’ offices to the folks at the county tax office have called my placard a “handicap placard”. A simple Google search shows that my state and all of my local news organizations refer to the placard (and the parking spaces) the same way. If I were to go to my doctors’ offices or the county tax office and ask for a renewal of my “access” placard, I would be met with blank stares.
I would very much like to be culturally competent, but I would also like to be culturally functional. Can you help me understand why using the current culturally-accepted terminology is so abhorrent?
Culturally accepted does not mean appropriate or the same thing as bureaucratically accepted. “Access” is a broad idea that can refer to helping a wide variety of people, “handicapped” refers to a condition rather than a person. A parent with a pram is not handicapped, but has similar access issues, for example. Also, designing for “access” makes the idea apply to everyone (such as people like yourself with a temporary mobility problem) rather than an afterthought to comply with poorly-enforced rules. “Handicapped” is not so much abhorrent as very old-fashioned.
Yes, this, please! Put the person first: I have a visual impairment, but I wouldn’t say “I am PDS” — there’s a bit more to me than that (and other than ophthalmologists, no one knows what the hell I’m talking about, anyway).
I love the comebacks CA suggested, especially the ruder ones (bonus points for cusswords). I am also a fan of the long, cold stare.
On the nosiness about sex thing – I have 3 kids who are close in age, and when people ask me “you know what causes that, right?”, I’ll respond “yes, and turns out we really enjoy it!”
Awesome! When people tried that with my partner (eldest of a good number of kids)’s delightful mother, her response was, “well, we used to think it was sex, but if that were true we’d have thousands of kids by now!” 🙂
I’m one of a large number of kids, and my mother’s response was always “Oh, so you’ve conclusively proved I’ve had sex a whole [current number of kids] times.”
This is fabulous!
Why… why would they ask that? Do they actually think you don’t know? What do they think happened around those pregnancies? “Doctor, I’m pregnant–was it because I went swimming in the ocean?” *brain shorts out*
Many, many people vastly overestimate their own cleverness.
“Yes. And the eggs were so beautiful, I was almost sad when they hatched.”
It is known.
My response last time some leering dude asked me a similar Q about my three kidling bookends was “Who the hell do you think you are, asking me a personal question like that? I don’t even know you!”
Embarrassed everyone standing in the school pickup line but me. Seriously, I looked around for moral support and everyone was doing the shoe stare of shame. But hey, maybe the whole lot o’em started to think twice before poking their smart assed noses into a tired mama’s business from that point onward.
Tact is for people I know and like. Everyone else gets Ornery Me.
My drinking buddy and co-conspirator for many years, also a power chair user since age 4, has mastered the big, brightly intelligent smile and the clear, well-articulated, and slightly loud but pleasant voice that signifies competence and burning intelligence. It saves time.
The one that really fries her is the clueless adult who stage-whispers to the child “Oh, look! Isn’t she brave!” Her response is to roll right up to the kid while ignoring the adult completely, and say “Hi! My name is Taira. What’s yours?” and if there’s time, engage the child by asking “Do you read?” or “would you like to know how my chair works?” and close with “It was lovely meeting you, Chelsey; I have to catch a bus now, Goodbye!” without ever acknowledging the existence of the large clueless person next to them.
It’s a 60-second learning moment for each of them. The clueless adult gets schooled in what it feels like to be deliberately ignored. The kid learns that intelligent friends come in all shapes and sizes.
My aunt has a power chair and a service dog and she is the master of the icy death stare when it comes to adults, but she is gentleness personified with kids. It’s nobody’s job but the parents to educate their children on how to be respectful, but I think that the 60 seconds or so people take with kids can lead to them being much more aware and non-assholish people throughout their lives.
Sidenote: it shouldn’t amaze me, given how incompetent people seem to be of acting like normal, respectful adults when interacting with PWD, but I am always stunned at the number of seemingly-intelligent people who lose the ability to read when face with a smiling dog with a “Please don’t pet me, I’m working!” vest on. She’s happy because she’s with her person and doing her job, not because you’re in her face and trying to scratch behind her ears.
Even if the dog doesn’t have a “don’t pet me, I’m working” vest on, people should know better than pet a dog that isn’t theirs without at least asking if it’s okay. If it’s not your dog, you don’t know what might bother it/set it off.
Totally agreed – irresponsible behaviour around pets is something that really ticks me off. There are a lot of great animals in the world, but not all of them love strangers. Stand a decent distance away, talk to the pet owner if they look open to a conversation, hold your hand out, etc etc etc.
I have to admit, I have to fight the urge to snuggle other people’s dogs, even working dogs. I do fight it and I’ve never done it–I settle for gigantic goofy grins at them and their dogs instead–but I do love a dog, man.
But still, that’s no excuse and people should control themselves.
Same here. I love animals, and even after having worked with dogs for many years (I volunteered at shelters and a vet’s office, and I have helped train herding dogs and rescues) my first reaction to a dog is still to try and pet it. I’ve gotten a lot better about it, and I will always ask the owner first if they’re around. It’s disrespectful to the person to ignore them in favor of the dog, and if the dog is working, or worse, in training TO work, being given attention like that could easily distract it and cause problems. It’s just polite to ask first.
Still hard to resist petting them sometimes. Dogs are pretty much my comfort zone. Especially big floofy ones!
It’s not just polite, it’s safe. Some dogs bite, and not all owners muzzle/[whatever else you can do] their dogs. My little brother once ran up to pet a bitey dog, but luckily it was small and the owner scooped it up before crisis. (Brother got a serious talking-to after that.)
A blog reader and I discussed this comment sub-thread on Twitter. You should skip the goofy grins and requests to pet the dog altogether. If the only reason you have to talk to the person is about their dog, then do them a favor and pass right on by without acknowledging either party.
Here is an excellent blog post about Service Dog Etiquette for Dog Lovers.
I have a service dog, and I realize that this is not what you want to hear, but stop doing that. It’s creepy and dehumanizing. Everywhere I go, people stare at me and my dog with big creepy sappy smiles on their faces and I absolutely hate it. It makes me feel like a circus freak, And to borrow from the article Title it is condescending as fuck.
Ignore service dogs. If you wouldn’t stare and grin at someone without one, don’t do it to someone with one. And remember that you’re not the only one doing it, you’re just one more creepy straw on the pile that occasionally breaks this camel’s back.
Wow, I had no idea. I’m really sorry.
(Just to note, I would grin at people with dogs that are not working dogs as well, because I love dogs, but I had no idea of the cumulative effect and will stop this.)
This is kind of a dumb question, so I apologize if it’s rude. I have two small, inquisitive children. Any suggestions on what to say to children who are staring, or saying (loudly) “Why is that person sitting in a chair?” (Bonus points if the older one says “Why are they in a stroller? They’re not a BABY.”) My current strategy is to simply say “They must need it for some reason” and then change the subject, but is there a better way to handle it? I also do the whole “We don’t stare at other people/point/etc.” but again…any scripts?
You could say something like, “It’s probably hard for them to walk. Using a chair lets them do more.”
I do not use mobility aids, so others should feel free to contradict me on this, but Miss Manners had a great reply to this question. A small child asked his father why the lady was in a wheelchair, and the father told him, “So she can come out and see all the pretty things around.” The emphasis is not on the detail of how, but on the normality of going out. Maybe you can adapt that one to your situation? “That’s not a stroller; that’s a wheelchair that she uses so she can do her shopping,” or something like that.
Question for you, AnotherEmily and other parents reading, as long as the Captain doesn’t mind. I live in a neighborhood with several elementary schools. Kids under eight or so tend to stare at me (and I don’t blame them or their parents, not staring is a learned skill). As a parent, would it bother you if I addressed you or your kid in that situation and said, “Did you have a question about me/the way I walk?” I don’t know that I would do this very often, but it’s something I’ve thought about in the past, especially because I prefer being asked what my disability is to being stared at. Especially when it’s genuine curiosity from a kid and not Concern Trolling from an adult.
I would love it if you engaged my child this way, especially if she was staring and I hadn’t noticed to correct it. But please don’t feel like you have to.
Me personally? I would appreciate it. If someone such as yourself had the spoons to go out of their way to engage my kids in a conversation about your disability, it wouldn’t strike me as untoward in the least. I’d probably be embarrassed that my kids were staring, but grateful in the end, not leastwise because you know things about living with your disability that I don’t, can answer questions that I can’t necessarily, even if I have done the reading and have a base of knowledge from which to draw. Just to be clear, I am not saying that I think you’re obligated, but if you have the spoons, a stranger engaging my obviously curious and youthfully tactless kids in a Q&A about their disability would not be something I found odd or off-putting.
I would be 100% fine with that, but there would be no expectation that you would *need* to do that either.
I do it all the time! I grin and say: “These crutches are cool, aren’t they?” and the the conversation is rolling.
Is there any model for genuine curiosity from an adult? Or is that just not done ever, at all, not even a little bit?
I tend to have issues figuring out when/what is appropriate in many situations. And I find being “not looked at” when my behavior is unacceptable to be as uncomfortable (or more so) as being stared at and/or questioned.
What adults have that kids don’t is access to resources. If you want to find out about somebody’s disability but you’re not already acquainted, you have the option looking through books or the internet or an informative evening hosted by a group trying to promote awareness of some condition or other. There are places PWD specifically set up where we’re willing to answer questions and educate others. If you really want to know, you could try one of those.
I use a wheelchair at times, forearm crutches at times, or a cane. Kids loudly ask their parents these questions about me all the time. I heartily encourage you NOT to hastily change the subject, as your kids will get the message that disability is so unspeakably awful that we must never discuss it. (Also, please don’t pick them up and RUN OUT OF THE STORE. This has happened at least five times. I am not kidding.)
I don’t have a script, actually. I have a suggestion: look at the person they are talking about. I’ll bet right now you look away, cringing in embarrassment. Look at them. Is the person leaning forward and smiling at your kids, looking approachable? You might say: “That’s a wheelchair, and many people use them to get around instead of walking,” and give the person a chance to speak up with eye contact and raised eyebrows. I myself love talking with kids about my disability, and showing them my super cool mobility equipment, and talking with them about brain damage (I have MS) and immune systems. They ask wonderful questions. Parents who can stand there calmly, modeling calm and good cheer around disabled people while their kids talk with me about this stuff without dying of embarrassment and running away are my favorites. If the person using the mobility equipment does not look like someone who wants to talk (plenty of people just aren’t chatty, or are in a hurry, or have had bad experiences with inquisitive kids), THEN I would suggest one of the following things:
* Explaining what a wheelchair is in a neutral tone of voice.
* Explaining that there are lots of reasons people use them: their legs might work differently, they might get tired easily, they might need to rest a lot.
* Explaining that pointing and staring are rude because they make people feel bad, but that asking you questions is always okay, and then answering them calmly to the best of your ability.
One of the things I’ve learned is that kids who have stuff like this explained like it’s not the end of the world can be some of the BEST advocates.
We have a close family friend who had a service dog, and FirstKid learned pretty early that the dog was only allowed to play with her when she wasn’t working for our friend, and what the harness looked like, and some of the different reasons that people have service dogs.
I was at McDonald’s with both kids a couple years ago and a man walked in with a service dog, and FirstKid began carefully (and somewhat loudly) explaining to SecondKid, “See the dog? That’s a working dog. You can’t pet dogs while they’re working. They do very important work helping their people.” The man just sat there smiling, and when I told our friend with the service dog about it, she said that FirstKid has more sense than a lot of the adults she knows.
MamaCheshire, my younger siblings are some of my favorite people for that reason. They are my go-tos for when I want to tell stories about condescending people, because they will just be so flabbergasted and indignant. It can be great validation.
I butt in to parent/child situations like that and say that I can walk a little bit, but it’s hard to do and it hurts my legs, so the wheelchair helps me get around. It is funny how kids accept that as a perfectly sensible answer, but lots of adults see it as a non-answer because they want to know “what is wrong with me” in a very specific way!
Loving this thread.
I am not the representative of all people who use assistive devices, but I love it when kids ask me instead of their parents. I am more likely to know the answer than a random stranger in the supermarket or on a plane! Also, often the parents are more uncomfortable/freaked out than the kid is, and the kid is asking a straightforward question: “Why do you have that stick?” And I can gear the response for their age: “There is a thing in your ears that helps you balance, and mine doesn’t work right, so sometimes I need the stick so I can walk around without falling over.” Gauging response to that, I can go on to, “Isn’t that funny, that your ears help you balance?” or, “Isn’t it a neat stick? It plays as a flute, too, if you know how to do it, and look, here’s the compass on the top,” or various other things.
I’m sure there are people who would be upset to have a small child ask them why they have their cane/wheelchair/leg braces/whatever else, but personally I would rather just take the question head-on in a way that acknowledges my agency, so, “I don’t know, honey; people need help with different stuff. If it doesn’t bother this lady too much, why don’t we ask her,” works great for me.
Wow, I could practically write a book on this subject. I was a part-time wheelchair user (until it broke and I couldn’t afford to replace it. 😦 ) and now use a cane sometimes, but am usually invisibly disabled. I’ve seen this both as the condescend-ee and the able-bodied-appearing companion to a visibly disabled person, as several of my closest friends have visible physical disabilities.
It sucks to have people treat you like a child or a puppy regardless of whether you have a physical or intellectual disability. I’ve been patted on the head; I’ve had the concept of “on the right” slowly explained to me; I’ve been looked at like I’m a perv for kissing my ex who had cerebral palsy; my best friend has had people forcibly escort her across a street she wasn’t trying to cross. Many people just seem to lose their shit around us.
I’ve gotten *a lot* of mileage out of a deadpan “Excuse me?” with a raised eyebrow. In particularly egregious situations, I’ve used, “I am neither a child nor a small animal, and I’d appreciate being addressed as such.” Though sometimes a “fuck you” is called for – or worse, a “get your fucking hands off me”. (Seriously. My body and mobility aids are not public property, y’all.)
my best friend has had people forcibly escort her across a street she wasn’t trying to cross
Aaaaaagh I hate this. I used to have people RACE ahead of me to open doors for me that I was never going to go through. (Never mind that when I used my cane I never wanted people to open doors for me anyway, since half the time they’d let go before I was through and let the door swing back and hit me.)
Ha, or when they would hold open the door from the inside, and have to drop the door on me when I was halfway through because I couldn’t go in without crushing their feet under my wheels.
Though for some buildings on my college campus I had a remote control that would activate the automatic doors. So I’d trigger the (hidden in the side pocket of my armrest) remote, the doors would open, and the inconvenient door-holder would look at me like I was a wizard and then sort of wander off…
If you didn’t shout, “Obey me, invisible minions!” or at least gesture dramatically, then you have far more self-control than I.
I have been known to say, brightly, “PANIC! There is a wheelchair user in public, on the loose!” and then cackle like a witch.
“Take your stinking paws off me, you damn dirty ape!”
A friend of mine is quadriplegic and when we got out to eat, I help with with his food and drink, but he usually pays because he’s an attorney and I’m an unemployed student. Often (but not always, thankfully…maybe service industries are starting to train employees better) restaurant staff will address everything they say to me and not to him, or bring me the check when he’s the one who requested it. Sure, I have to sign it on his behalf, but if he asked for it, he’s the one who should receive it.
To fix it, he generally acts as though they’re talking to him, and they usually get the hint. Eg, server asks me what we would like to eat, and I answer with what I would like, but they keep looking at me and ask what my friend would like. He’ll say, really loudly if necessary, “Well, I would like…” and after one or two instances of that they knock it off and talk to him like the adult he is.
I don’t know if this would work in other contexts though. Part of it is definitely the environment where he is the paying customer and they’re supposed to be welcoming.
On a recent family trip to Disney World, we rented a wheelchair for my mother (she’s got a bad knee). Most of the time she’s fine getting around, but excessive walking/climbing are too much for her. So after a day of sitting, she decided to stand during the Electric Light parade, to stretch out the stiffness. We had snagged a good spot by virtue of the wheelchair and I didn’t want to be asked to move because no one was sitting in it. Plus, after a day of pushing her around, I *really* needed to park it and I claimed the chair myself.
As the parade went by, I kept getting visited by the strolling characters. They wanted to shake my hand and such. It didn’t occur to me till some time later that they probably assumed I was some poor mentally damaged lady who had to sit in her wheely chair. I had a good giggle about that as I skipped back to my hotel room. Thanks Prince Charming, it was sweet I guess, but I don’t need your pity.
ha for a moment I thought this was going to be a “IF YOU CAN WALK SOMETIMES YOU MUST BE ABLE TO WALK AT ALL TIMES” story. That shit drives me up the wall.
Definitely going to second the “relay back exactly the thing they just said and in doing so make them realize how stupid a thing they just said.” The incredulous look paired with “I’m sorry, what? Repeat that, please?” Is a favourite of mine.
While I don’t have a physical disability, I am a big queermo, and sometimes people like to say really stupid things about that! I usually employ a similar strategy as is outlined here when people start vomiting up stupid and offensive observations/questions, and while it sometimes makes me look like an asshole, it works magically.
The trick is to give zero fucks that you might look like an asshole, because you will. You’re not BEING an asshole, but you’re calling out a person that probably doesn’t know better, and 9 times out of 10 they’ll make it all about their FEEEEEELINGS. That’s not your fault. That’s not your problem. It’s not your job to educate them; you’re allowed to roll your eyes and treat their stupid ass comment as a stupid ass comment.
What is a queermo?
Part homo and part queer, mashed together and doused liberally in glitter.
Or at least that’s my understanding.
Aren’t homo and queer generally used interchangeably? I know queer can mean more than just homosexual, such as being bisexual, pansexual or whatever other preference the individual may have…but how are you both homosexual and queer? If you’re queer, that’d pretty much encompass homosexuality, to the best of my knowledge.
I get the impression that it’s about wanting a word with the wonderful euphonious bounce of “-mo” at the end of the word that describes a group of people (emo, mathmo, etc. also count here) and yet not quite fitting the definition, so you have to smoosh words together.
Dude and bro are also interchangeable terms, and yet there’s dudebro. It’s just a silly slang thing.
You saw this taxonomy of bro-ness, right?
I haven’t…and I can’t now, because there’s an error message when I try to open the page. But I want to seeeeeee!
I’ll keep sporadically refreshing to see if it comes up.
I think I fixed the link, so sorry!
Got impatient, did some Googling, think I found it elsewhere. Venn diagram with actors/fictional characters used as examples of different kinds of bros, yes? Funny!
I appreciate the commenters who have mentioned that intellectual disability or no, we all deserve the same treatment. Jennifer was right on in her response, especially in initiating the answer with the acknowledgement that it’s creepy and weird no matter what! LW, I can understand the impulse to be offended that someone is assuming something “negative” about you, in addition to the condescension. I think it’s a very human instinct to want to distance yourself from someone with an intellectual impairment, especially given that it’s a horrendously common assumption. BUT it would be great if we could all call out the behavior with out framing it as, “Hey, I’m not as messed up as [person with cognitive disability]” as if that’s the most insulting part of that.
I don’t know I am making any sense. I used to work with people with physical and/or intellectual disability and/or mental illness and the sort of…hierarchy of functioning is frustrating to me. If you don’t know a person, the default interaction should be identical to the way you interact with every other customer/colleague/stranger and you can adjust as necessary based on the individual’s response.
Danielle, I have similar beefs with the “hierarchy of function” and agree with your point that the problem is not being ‘mistaken’ for the cognitively impaired. As a kid, some of the other parents at my PT’s office would set me up as some kind of “model” because I could walk mostly unassisted (my leg braces aren’t very visible). It creeps me out to think that I was held up as “good enough” when actually, everyone else was too. I try to frame the problem as, “All people with disabilities, of which I am one, have dignity and worth and mine is often ignored in the following ways,” but I don’t always succeed.
As a kid, some of the other parents at my PT’s office would set me up as some kind of “model” because I could walk mostly unassisted (my leg braces aren’t very visible).
This reminds me of the flashback to Leela’s birth on Futurama where the doctor proudly declares her the least mutated mutant ever, or something like that. See, most of the other people in her community of mutants had octopus tentacles or tails or other really noticeable things that set them apart from non-mutants, but Leela’s only difference was having purple hair and only one eye. And I guess this was a status symbol.
It never occurred to me before how messed up that scene was.
My knee went out a couple of years ago (it returned several days later with some lasagne wrapped in a foil swan and no explanation for its absence), and I had to use a cane while on vacation. Everyone in the airport kept shouting at me. “Would you mind keeping an eye on my bag while I go over to the, er…?” “OF COURSE I WOULDN’T YOU TAKE AS LONG AS YOU LIKE!” I stand quietly in line to use the, er… and “OH YOU GO ON AHEAD I CAN WAIT.” I know people were trying to be kind, but after the first couple of hours I kept wondering how much trouble I would get into if I accidentally hit one of them in the back of the head really hard with my cane.
Sadly, there are video cameras everywhere these days.
Here’s a (possibly clueless!) question: As a child, I was trained to offer my spot in line to people with disabilities, since using the bathroom is sometimes harder and more time-consuming for them.
I guess my question for you is, was it the manner of delivery (the shouting loudly and the insistence) that was the problem? I.e., would it have been non-rude if the other person had, instead, said something like “Would you like to go ahead of me?” in a normal tone of voice and so forth? (And been willing to accept “no thanks” as an answer?)
Yes, as a wheelchair user, I don’t mind when people offer help in a normal tone, and then listen to my answer and respect it. “Would you like any help? What would be helpful?” is a good script for that.
Word. Thanks for the data point!
It was weirdly shouty, and they made the big eyes people make when they are talking to tiny children. So instead of, say, “You wanna go ahead and use the big stall, since you’ve got the stroller and the kids and stuff?” as one does, it was more, “OH NO YOU GO RIGHT AHEAD” with some You Brave Soul sauce on top. You kind of had to be there.
Sort of dying of laughter regarding your knee’s return with lasagne. I think it may have been on a date with mine, which pulled a similar stunt at work a couple years ago.
The condescension I most recall from that was random strangers at Wal mart treating me like a child(I was 22) and telling my mom over me that I was wrong and my vacationing patella was curable. I cruised off in my little motor cart(crutches hurt )and I couldn’t yet walk unaided) and let her catch up. It was even more hurtful.that my mom didn’t get why I was offended.
A few people have commented kind of going, “They didn’t have to treat me like that, it’s not as though I had an intellectual disability!” Which kind of makes me ask, is that even the right way to treat PWD with developmental delays? My experience is pretty limited to people who far prefer the adult/snarky presentation style and bridle at the infantilizing response, but that’s partly because they were all street kids.
(As a sidenote, guys: when you say, “They treated me as if I were ____, how awful!” please make sure you’re not accidentally backhanding a group of people you don’t actually want to insult by insinuating that being one of them is an awful thing.)
The second part is something I can relate to from a distance, because I have a close relative with an ‘invisible’ learning ‘disability’, and his disability (it doesn’t even feel right to use that term) is sometimes used as a mocking term by society at large. I don’t want to reveal his condition to anyone as it’s his business but I do find it frustrating to hear it joked about.
On the flip side, as someone else pointed out with the anecdote about a person requiring help with their leg & being told to be more independent, or someone dyslexic not getting help with forms, treating someone like a human being no matter what doesn’t mean being horribly thoughtless to them, and ignoring the problems they do have in interacting with this world. It just means not treating them as less of a human being, either way.
I tried to confide in a friend about the trouble my close relative had in getting educated, and finding/keeping a job partially because of learning condition X. She rebutted that she knew someone else with condition X who was educated & successful in their career so condition X couldn’t possibly have anything to do with my close relative’s issues. Never mind that different backgrounds, schools, and cultures could impact on learning development, but there might also be different severities and types of a condition, too. I wish I’d had a good answer for her at the time.
One alternate term I’ve heard used is “learning difference.”
I’m really sorry your friend gave such a hurtful and thoughtless response. So much oppression happens when groups of people are treated like a monolith. What’s true for one must be true for all! Those people are all like that! And so forth. The good intentions of many of the people who say this crap do not erase the harm that they cause.
is that even the right way to treat PWD with developmental delays?
Nope! My sister has multiple learning disabilities, and even though in many respects they mean she has the characteristics of a much younger person (she’s almost thirty, but still enjoys books and media aimed at the under tens, needs assistance with tasks involving coordination such as cutting up meat, and can’t easily cope with managing large amounts of money), that does NOT mean that she needs to be treated like a small child or condescended to in any way. She still appreciates having a conversation like an adult (even if in practice the other person is restricting the topics – so I wouldn’t talk to her about the economy, or about my sex life, for example), and doesn’t like it when people fawn over her or assume that she won’t be able to do something. It’s helpful for her if you speak more sloudly and clearly than average, as she happens to also have some hearing difficulties, but as other people have mentioned it’s really enuciation which is most helpful here. The same goes for my aunt, who has even more profound cognitive impairments.
As some of the people with physical disabilities have pointed out on this thread, it’s not that it’s wrong or offensive to offer help or to make adjustments for someone (man, I wish people would do a lot more of the latter). But the rule of thumb is to approach someone as you normally would, bar any accommodation for their specific impairment. It’s super-helpful when people pay attention to the fact that my sister has some cognitive impairments and adjust their behaviour in a helpful manner – for example, by taking a bit more time explaining which platform she needs to get to when she catches a train – but that doesn’t have to mean behaving in a condescending manner.
On the plus side, seeing how people respond to my sister on first meeting is a pretty good test of character! People who are condescending or rude to her typically turn out to have other undesirable personal qualities, and the fact that my partner has from day on treated her just like any other adult was a great sign for me he was a keeper. (Also, for people who are worried – both she and I have a pretty fine tuned sense of when people are well-meaning but muffing it, as opposed to thoughtless or downright rude.)
I only had one brief period where I was treated like I had mental disabilities. I was 15 and taking a long flight to visit family and one of the airports I had a connection in was sending my mom into fits imagining me getting lost and -que long list of worst case scenarios here-. The only way to get her to feel better was to get one of those airport people who you can add to the ticket price to help you from the first flight to the next one.
Well, when said helper looked at me he was obviously surprised because I was a older teen. What did he assume? That I must have mental disabilities because why else would I need help for something so simple? I tried to explain my whole mother thing, but all I can remember is him speaking in the most patronizing tones and making sure I knew exactly where my seat was and wanting to see me sit down in it despite me telling him I was fine the moment we reached the gate 30 minutes before that. Luckily after he left the two women sitting next to me were highly sympathetic and we had a good laugh about it (and that confirmed that my gut instinct was right because they were gaping at how he was treating me when I was being seated next to them).
I still remember their gaudy sweaters. They were awesome.
Even that little taste was enough for me to want to flip out on someone. I had never been treated as if I was so stupid, so untrustworthy in my knowledge of my own abilities, in my LIFE. I can’t imagine having to deal with that idiocy day in and day out. The good news is that this gave me some intelligence in treating people normally, but eesh. Much empathy to all of you who have to deal with that.
Aaand I realized I was being careless with Abelist language here (wow, that stuff is really insidious), so apologies.
I had a similar experience last year (I’m 35), in a way that left me enraged at medical care in the US.
My (private, employer-provided) health insurance has a similar name to a program for impoverished people (they are administered by the same company, so the first two words in the program name are the same). When I was in the hospital after having Baby Preposterice Hypotenuse #2, staff kept coming into my room and doing the loud-slow-speaking thing at me and generally treating me like they thought I was…well, mentally deficient. (I do not think that people with cognitive impairments or learning differences are deficient. I felt these people were acting as though I were deficient.)
And then, after an answer or two from me, they would get these REALLY STRANGE looks on their faces, look at my chart, frown, and then say “um…do you have private insurance?” and I would say “yes” and their attitudes would totally change and they’d start treating me normally. It was…enlightening. (Let’s go with “enlightening” instead of “one of the most fucked up and enraging things ever”.)
You know all those studies about how various groups get worse medical outcomes etc. and how poverty is a big predictor for that? I wonder how much of that is affected by medical professionals treating impoverished people badly (and therefore not listening to them properly and/or making them feel unwelcome seeking care…)
Anyway. So that happened. It made me feel badly for any impoverished persons and PWDs who had to deal with those folks, because goddamn, what a bunch of condescending jackasses.
Oh HELL no. I’m sorry you had the condescending asshattery.
I had an awful experience with something like this when Spouse and I were Broke Students On Medicaid. Or, well, when I had just gotten my first Master’s degree (with honors, mind you) and a job offer in another part of the state and was having trouble pulling together the money to actually move.
Spouse was having a major exacerbation of his mental health issues at the time, and the Worst Social Worker EVER wanted to know what “physical disability” was keeping him from working – this was the week after he’d been in the ER with suicidal command hallucinations.
And then it got worse. We talked about how we were apartment hunting in the place we wanted to move to (looking for apartments on Craigslist) and she stopped me and said, “Oh, you shouldn’t do that. The Internet is for INTELLIGENT people!”
What the actual fucking fuck.
I walked out, because I was going to start screaming otherwise. But this horrible woman is part of why I eventually decided to become a social worker, so I could be the person who doesn’t do that.
For me, it was — it was this transitory thing that had very little impact on my actual life, but I’m sure some people get that ALL THE TIME from every so-called professional they interact with, and that’s what made me so angry. It’s all wrapped up in this–constellation of isms. Ableism and classism and educationism and racism and if you don’t have a large enough complement of the right attributes you just get screwed over by the system, OH MY DOG WHAT.
also, “the internet is for intelligent people” what what what. I can’t understand saying that to another person! Or believing it, either, but even if I believed it, why would someone say it? what an ass.
The one that is overall more funny than rage-making but is still really frustrating when I think about it was when I had SecondKid. SecondKid was born at a hospital that had just been part of a merger. The hospital I wanted to deliver at, because it had a really low C-section rate etc., had merged with one that had a rather high rate. I still had the nice low-intervention midwifery team, and had a really awesome birth experience overall – most of the labor spent in the hot tub and everything went well. Until I was moved out of L&D into the recovery room, which first of all looked like something straight out of The Yellow Wallpaper and secondly…well, the nurse saw fat mama and almost 10-pound baby and wanted to check the C-section incision I didn’t have, and then wanted to check the epidural site that I didn’t have either. And then somehow they went from “healthy newborn” to writing “MACROSOMIC INFANT” on everything…I don’t even. *sigh*
I read that the first two times as “MACROCOSMIC INFANT”. Your infant is vast, and contains universes.
LW, pretend to be as intellectually challenged as they have suggested and then run over their stupid feet. Powered chairs are heavy 😀
It might interest/be useful to folks on this thread to know that “dumb” and “stupid” are often considered ableist terms. Here’s a list of problematic terms like that, along with a fantastic list of words you can use to insult someone that *aren’t* ableist (my personal favorite is “asinine”): http://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html
I would think, that telling people speaking about their own disabilities what terms they can or cannot use is fairly insulting and talking down to them. I personally feel people have a right to decide what terms they personally find bothersome and what context they find them bothersome.
Also, asinine is simply ‘stupid’ in another language.
No, actually, just because I’m mad and crippy doesn’t mean I can’t be an ableist shit about people with different disabilities or impairments to me – just like being gay doesn’t make people immune to being shit about/to bisexual or trans people.
Like, I have *caught myself* being shit to *other wheelchair users* *while I am also in my chair*. This stuff runs deep.
kaberett has responded well to part of your criticism, but I would like to clarify something: I am not, in any way, telling people what they should or should not call themselves, and I agree 100% that “people have a right to decide what terms they personally find bothersome and what context they find them bothersome.” The point of my comment was that some people are ALSO interested in how OTHERS understand what they write/say, and they may, therefore, like to have more information about ways in which other people might interpret their language.
For instance, I am neurotypical and currently able-bodied. I use those terms because it would be hurtful to lots of folks if I called myself “normal,” “not crazy,” or “not handicapped.” That’s a choice I’ve made because other people have taken the time to educate me about how such terminology is marginalizing. To continue to use hurtful language after its effects had been pointed out to me would have been, well, asinine (which means, incidentally, like an ass: silly and obstinate).
This is a fantastic, clear explanation. Thank you for dealing with all the rest of the stuff I didn’t. ❤
“Asinine” means to have the qualities of an ass. While it may be used as an analogue of “stupid”, the history is different. Which is sort of the point of that list.
(Ahem. Sorry. Indoor voice in future. 😉
Interesting page, but some history/context would have been helpful. It’s pretty obvious why it’s problematic to call somebody “retarded” as an insult, but why are “stupid” or “dumb” any worse than “unintelligent”?
You’re right that it’s a bit bare; more detailed explanations can be found by googling. Essentially, though, “dumb” has its roots in actual disabilities-the inability to speak (or hearing impairments that affect speech). “Stupid,” similarly, is rooted in the idea of someone whose mind lacks the ability to comprehend or is impaired in some way.
In both cases, and similarly to the use of the word “retarded” to mean something generally bad or illogical, these words suggest that an idea is bad *because it comes from a brain that isn’t functioning “properly”* rather than because it is a bad (selfish, poorly thought-out, willfully ignorant, heartless, incoherent, etc) idea. They attack the function of a person’s brain rather than the content/reasonableness/morality of the person’s idea.
FWD/Forward ran a Ableist Word Profile feature that covers a lot of the common ones. If nothing else, I find it useful to have a deeper understanding of what the language I use means.
What a cool resource-thanks for sharing!
I’m the author of the Autistic Hoya site. If I ever have time and spoons, I will add more detail to that list or link to pages such as FWD’s ableist word profiles that already have (so as to not reinvent the wheel on some of them). A good portion of comments and emails that I receive are spent accusing me of policing language, being overly politically correct, or being ridiculously hypersensitive, and I strongly disagree with all three of those accusations or insinuations. I affirm strongly everyone’s right to describe themselves however they wish, and I also affirm strongly the right of any marginalized person to reclaim language that has been historically or is currently used to marginalize them. At the same time, it’s not my right as a developmentally disabled person without psychiatric disabilities to reclaim language used to belittle people with psychiatric disabilities, because I don’t belong to that group — the same goes for language used to marginalize those with mobility disabilities, which I also don’t have.
The purpose of the list in question, as someone did point out in an earlier comment, is to note words with histories of oppressive usage that folks may or may not be aware of. The words on the list have been used historically or currently or both to other or marginalize disabled people because of their consistent usage or because of their literal or historical definitions. The words offered as alternatives do not, as far as I have been made aware, carry such histories, even if they are colloquially used to express analogous meanings.
Hey, this list says “hearing impaired” and “visually impaired,” when the term according to the Deaf community in the US is “d/Deaf and Hard of Hearing.” I’m sorry I don’t have a concrete answer for “people with visual impairments,” however, to my knowledge, “visually impaired” is not acceptable.
As you make note of on the list, personal preference in being referred to (and, of course, self-referential usage) overrides, but only in individual cases and only when given clearance to use these terms.
I am able-bodied, but I have social anxiety, which makes totally straightforward interactions fraught for me, and ones with any even slightly unusual circumstances (like a language barrier or a visible disability) super stressful. I do my absolute best not to be an ass, but I am not socially graceful and there are very few good scripts provided by society for not being an ass in these situations. Even right now, writing this comment, I feel like I’m probably being an ass. Anyway, I’m grateful for this post because it gives me helpful insights and demonstrations of How Not to Be. I’m trying to work on not getting tripped up by having to accommodate others’ needs, and this is a good starting point.
Feeling like an ass sucks. I’m sorry. I hope it helps to remember that if you do trip up, or just say something that gets people upset, it’s not the Worst Thing Ever. In the thread, a lot of PWDs are talking about how *they themselves* (we ourselves?) say or do things that are unintentionally obnoxious. Slipping up or causing someone irritation doesn’t mean you’ve done something horrible. It can be hard to forgive yourself and move on so you can walk into the next interaction thinking, “I can be respectful and casual around other people” instead of “I am totally going to fuck this up.” It’s something I recommend, though.
The way people say daft things makes a massive difference to how a PWD will respond. There is something in the tone of voice that determines whether you get snark for saying something insensitive/rude or whether you get a gentle prod in the right direction (“Please don’t use the word ‘handicapped’, I don’t like it very much and would prefer you used [insert preferred term]”).
Of course, that is only my responses and those of a few friends who have disabilities. Not all PWDs will react like that, for example they might be having a bad day or just be an ass.
The fact that you’re thinking about this stuff probably means that you would get the latter response though, engaging your brain is always a good sign!
THIS. So much. I am only sometimes physically disabled (leg problems from a childhood accident), but I also have social anxiety that makes it very hard for me to be around lots of people for long periods of time, and I also have schizophrenia and bipolar disorder (medically diagnosed, not self diagnosed!). Only close friends know about it, but they sometimes use it as a tool not to take me seriously. One of my friends actually told me “Well, you’re crazy, so your opinion doesn’t matter.” completely seriously.
It hurt. A lot.
omg that was not okay! I’m so, so sorry you had to deal with your friend saying that.
Speaking for myself, being neuroatypical means that I sometimes decide *for myself* to question my intitial thoughts, feelings, and reactions to particular circumstances. It is never okay for someone who isn’t *your* doctor or therapist or suchlike (Note: not just *a* doctor or so on) to question your thoughts and opinions like that, let alone totally dismiss them. (And seriously, I would hope that medical professionals would treat people with more respect than that too, but I know that some don’t. It isn’t okay when they do it either.)
Thanks! I question myself a lot too…I’ve ended up saying stupid things before, because of the aforementioned problems and some learning disabilities I also have. I can’t read normal clocks (only digital) and I can’t read music. I also have trouble with math. When I was in school, we were required to ‘show our work’, which always stumbled me up. I could do the problems in my head, but the moment I tried to put anything on paper my brain just scrambled it all up and it didn’t make sense anymore. I tried explaining it to the teachers, but I’d just get yelled at. They almost put me in a special ed classroom, but they had me IQ tested and since I scored very high (slightly above genius level), they put me in a gifted and talented program instead, which made things worse since there was so much pressure. I was told I couldn’t have a learning disability if I was so smart, and I was just being lazy.
Sometimes I also end up thinking or even saying things that are very childish…I avoid speaking at all in a lot of social situations because I’m so afraid I’ll say something stupid. Once when on the beach with a friend, I found a starfish that was missing a leg and put it back in the water. He commented on the fact that it’d grow it’s leg back, and before I could stop myself I’d said that if someone had one starfish, and cut one of it’s legs off, then the starfish would grow it back and the leg could grow a new starfish, and if they kept doing it they could have infinite starfish! But it’d be mean to do to the starfish. He stared at me for a moment and told me that was something a five year old would say. I’ve been laughed at or called ‘cute’ for saying things like that before, but I think what usually gave me a pass from people is the fact that I look a lot younger than I am, so they think I’m actually twelve or something. If they actually know my age, though, there’s no excuse to be so childish, so I am told I’m being stupid, so I usually keep my mouth shut all the time, even when I desperately want to say something. I am a lot more talkative online because I can pause typing, look at what I’ve typed and think about whether or not what I’m saying is dumb, but since I seem to have a faulty brain-to-mouth filter IRL, I just keep my mouth shut. I’m not sure if thinking and sometimes speaking in a very childish way are part of a mental problem, or if I’m just weird.
Woah! I do not think that is childish! I think that would come across to me as you being enthusiastic about how cool the world is. The world is really fucking cool! I get excited about it too! Sometimes people try to make me feel badly about getting excited, also. Those people are usually uncomfortable with themselves, and projecting that onto me. They’re putting other people down to make themselves feel better by comparison. Not cool.
(You, however, seem very cool!)
Really? I do get excited about things like finding a plant I’ve never seen before, or seeing a baby sea turtle or something. The first time I saw a seal on the beach, I was over the moon excited! I love seals, and I’d never seen one in person before! I got really excited and pointed it out and was like “OH MY GOD LOOK IT’S A SEAL ISN’T IT AWESOME?!” and literally bouncing a little. If I do stuff like that, or say something to those effects, they usually tell me I’m really childish. Show me an otter, and I’ll show you a grown adult squeeing like a fangirl at a convention. Some stuff is just fascinating and awesome!
I also tend to personify inanimate objects, like plants and stuffed animals. I told a friend to stop pulling off the leaves of a tree once because he was making it sad, and he looked at me like I was nuts. I also feel guilty if my stuff sheep falls on the floor or something while I’m asleep. Is that weird?
Yes, really, and nope, not weird at all! I totally feel the same about my stuffed polar bear. I’ve had her for 28 years! That is a long-standing relationship! And I named my bike and my car, and I know tons of people who do the same. Personifying things makes life more interesting and fun.
And seriously, I find it maddening when people stomp all over other people’s enthusiasm. That is like the definition of a killjoy. I guess people think it’s cool to act like nothing is cool, but that attitude makes no sense to me. Someone – John Scalzi, possibly? – said that a geek is anyone who really loves something, loves to talk about it, and loves to share that love with other people. I’m paraphrasing. But your analogy is apt – fangirls squee at conventions! And people like us who love nature, or animals, or how amazing the world is, squee when we encounter those kinds of things!
I think it’s braver to show enthusiasm than it is to put someone down. Braver and truer. Also I’m concerned that this has veered totally off-topic, but I do think it’s a conversation worth having! Hopefully the Captain won’t mind. =)
You’re not alone! I have been known to stop in the middle of a walk with someone to crouch down and stare at a weird bug, or to worry about stepping on grass, or to talk with random animals, and so on. I jokingly say that walking with me is like walking with a toddler sometimes, but I consider it being engaged with the world – which is full of weird and awesome things! – and wish that more people were that way (or were open about it).
And I also love how when I’m online I can *see* my words and look them over before letting them loose in the world. 🙂
I stop and look at weird bugs and stuff too! If I’m out on the road and I see a turtle on the road, I’ll pull over and go get it and take it somewhere it’ll be safe where there is plenty of water and food for it (nearby pond or something) and on the way there I usually have a conversation with it. I might even name them if I can tell their gender. I love stopping to look at unusual plants and bugs and things more closely. I think it gets wierd when I start humanizing random objects though, like if I see a can that missed the recycling bin and is sitting on the floor I’ll put it in the bin not out of planetary responsibility, but because I’m worried it’ll get lonely by itself.
Oh faetouched. I’ve spent a lot of time in the world of Gifted advocacy, and *so much* of what you say is totally normal for the people I met there, including not being able to show your work in math or having flights of thought other people can’t follow like the starfish thing (and having schools that don’t believe that twice-exceptional kids exist!). But it’s so easy to feel alone–I don’t have a cite, but a HUGE number of Gifted kids (90%?) at one point or another believe they’e aliens/fairies/androids/etc., because clearly they don’t belong to the human race. When really, they’re people like everyone else; they’ve just got a mental… setting… condition… thing that affects less than 2% of the population.
I want to send you Jedi mind hugs.
Eugh, ditto-ing the “that’s not childish; it’s awesome!” responses. Your friend was being a douche. Being called “cute” for being curious isn’t much of an improvement either, I always hated that. -_-
I don’t have any learning disabilities (the inability to spell out your thinking in class sounds so frustrating), nor am I a genius, but I am *obsessed* with animals, get excited about weird bugs, and anthropomorphise *everything*. 😀 I also analyse the shit out of everything so if I see something unusual in nature I’ll start rambling about why it may be.
I can assure you there are lots of us enthusiastic weirdos out there: a lot of what I love about my partner is that he is interested in discussions about what genus a random animal may be, and how limb regeneration works, etc etc. (The starfish leg wouldn’t grow a new starfish because it’s missing the central nervous system, if you haven’t already looked into it, BTW. :D)
Oh, I know about the starfish thing now, I did a little more research on them…I end up learning little tidbits about just about everything, even if it seems inconsequential, because I love to learn, especially about things that are weird! I analyze everything too…it’s part of why I don’t like watching movies with people, because they’ll eventually get tired of me pointing out plot holes or saying things like “Well, that wouldn’t actually work, because the physics are off-” and things like that. XD
Not to spam you but I really want to say that while sure, some people will find you bizarre, there are plenty of people who will be in awe of your coolness. Often at uni I will muse on *why* x or y is the case, and if I’m in a tutorial with a bunch of “normal” people I can feel their bemusement. But by being myself I meet people who think the same way, and don’t belittle me for being interested in the world.
I am obviously lucky in being brought up to cherish being weird and not want to fit in. You sound like a cool person, and I hope you can find more like-minded people to hang out with. ^_^
Thanks! I wish I could find more people like you to hang out with, we could go out and find weird bugs and natural phenomena to analyze together!
What Annafel said! I get excited not only about plants I’ve never seen before, but I will cheerfully say “OOH HELLO YOU” to plants I particularly like, or “OH AREN’T YOU A NICE ROCK” to nice bits of rock. None of what you describe yourself doing sounds weird to me.
In terms of being in the gifted and talented program and being told that you couldn’t possibly have a learning disability with a high IQ, that just makes me so… angry and also confused that people don’t understand that the two aren’t mutually exclusive. Or mutually inclusive. Especially considering the fact that I have a learning disability that is actually *exacerbated* by my high IQ.
Also infinite starfish is a completely fascinating concept and sounds like some sort of cheat code or magic spell or something. “I CALL THE POWER OF INFINITE STARFISH UPON YOUR CONDESCENDING HEAD.”
Dude…the power to summon infinite starfish would be AWESOME. Guy being a jerk to me at work? “STARFISH IN YOUR FACE!!” Someone wolf-whistling at underage girls walking on the sidewalk? BURY THEM IN THE OCEANIC GOODNESS OF STARFISH.
EVERYTHING IS STARFISH.
[/hyperbole & a half…]
I love hyperbole and a half! I’m so glad she’s started posting again, I was worried for a while there.
STARFISH UNTIL THE END OF TIME.
…why doesn’t Aquaman do that sometimes?
If anyone wants to talk about Giftedness more, I’ve got an offsite place for discussion over here.
(The starfish discussion reminds me of “The Immortal Life of Henrietta Lacks.”)
Really a reply to staranise, I hope I got the closest spot to it:
That’s such an interesting discussion over there, I might create a dreamwidth account just to join in.
From reading this thread, you sound like someone I’d like walking around with, so we could point things out to each other.
Also, there are enough people like us to support things like the Daily Otter RSS feed.
^_^ That’d be fun! It seems like a lot of people here on CA would be awesome to hang out with. :3
Daily Otter? I’m not familiar with that.
You’re not childish, you just have very boring friends 🙂
staranise, I have to thank you for that discussion. I can’t say more right now because I am too overwhelmed with sadness and relief, but thank you, thank you.
If you like, you can look up viewing things with a beginner’s mind, a mindfulness principle. It sometimes uses the word child-like, too, which is different from childish, and is all about the way a person is when they are open to learning a new thing. A person is different once they have started to figure something out and have ideas about it and preconceptions. I think that being open to noticing random things around you and speculating about stuff is part and parcel, although of course you have to be able to practice different kind of attention/mental structures as well in life.
But these things you do, they are valuable, and even when they have things in common with children, they are not to be dismissed.
Occasionally I’ll ask my friends whether a thought process or emotional reaction sounds reasonable but I’d be annoyed if they just told me it wasn’t out of nowhere. (With maybe a couple of exceptions eg privately and gently asking if there’s further context or how I’m feeling recently.)
As a able bodied person, thanks for all the tips! I have a quick question. I find that when I meet someone who is disabled I get a little awkward at first, because I’m not sure what to say or I don’t want to look like I’m staring. Does anyone have advice how to turn off that initial awkward reaction from meeting someone who is different? I don’t want to be insulting and to treat everyone with respect.
You need to meet more people who are different from you in a variety of ways. That will really help a lot. And maybe find some images of people on crutches/in chairs/whatever online so you can look at them.
And then remember these very useful phrases: “Hi there”. Always handy, with anyone. But look at the person’s face, not their chair or crutches or scars or boobs.
And you can also use “Hey, do you need any help?” because lots of times people do. People with 2 kids in strollers, or people carrying a lot of stuff. But, you know, ask it from several feet away like you would with anyone, and if they say no, just smile and say, “Okay great. Have a good one” and then Go About Your Business.
(I offer you these bits of advice because I’m a *currently* more-or-less able-bodied person who has had lots of friends of varying degrees of ability/disability and I’ve been in the situations and have heard the conversations.)
I have found that asking “would you like some help” is less likely to be met with hostility. Many people do not want to have it assumed that they “need” anything.
Or maybe “You got that?” ?
1)simple practice (thneedle’s comments are spot on) and 2)work on putting away that idea about disabled = “someone who is different” (even if that was a typo when you meant “disabled,” it’s a telling subliminal error). Fact: We’re ALL different, and that’s what makes the world an amazing place in which to live.
“Fact: We’re ALL different, and that’s what makes the world an amazing place in which to live.”
Exactly! This is kind of like when guys ask, “how do I talk to women?” Obvious answer being: “exactly the way you talk to everyone else. Like people.”
There’s this tired old comedy trope about someone who has an obvious impairment, but pretends they don’t, and is very touchy and proud and gets very offended if anyone mentions it. “Colonel Wossname is coming–don’t mention that he wears an eyepatch!” It feels to me like a LOT of the anxieties people have when dealing with people with disabilities are taking the assumptions of the trope as true–that it is very rude to acknowledge that the person has a disability, so you must pretend the disability and its effects are invisible.
However, the reality is, PWD know they have disabilities/impairments. I know my limbs are kinda gimpy-looking. (People used to cringingly feel it was their duty to inform me that I did not have the standard number of fingers, as though they were notifying me that a relative had died. My reaction was basically, “Holy shit REALLY? I never noticed!”) So I don’t mind if it comes into conversation when it’s relevant. For example, if you’re my manicurist: I KNOW that I have fewer nails than usual and some of them are shaped funny. There is no need to make vague hand gestures and make oblique references to my “situation” if what you really want to know is if I want decals on my nails, since some of my nails are the wrong shape and the decals won’t stick to them.
Finding out when it’s relevant is what takes experience, and you mostly get that from listening to PWD talk about what it’s like. It takes learning to look at the world a different way to just have a map in your head of the routes through a place that don’t involve going up or down any stairs, or to be able to look at someone and think, “I should ask if walking long distances is a problem.” Because asking is really the magic thing. “Do you need help?” or “Will you have any difficulty?” or “Is there anything else I can do?” can be really great, if they don’t demand an answer (as in, “I INSIST that I help you, no matter how much it inconveniences you!”) and if you wait for consent before acting.
Cap’n, a comment about acronyms: people who are used to talking about certain things, especially in online places, often use acronyms that are common in some settings but perhaps not recognized in others. Since this is a “101” space in so many ways, maybe we can remember that this is one of the “others”?
Some examples from comments here:
JRA: I think this is Juvenile Rheumatoid Arthritis.
RA: Probably not Resident Assistant. Probably Rheumatoid Arthritis.
PWD: Probably this means Person/people with disability, but I don’t think it was ever spelled out.
TAB: Totally Able Bodied? Really unsure here.
Temporarily Able Bodied, a term that I think has some conflict surrounding it. I have some discomfort with it when applied to “anyone-who-is-not-currently-disabled” — although the point is that anyone can become disabled due to accident or illness or age — but no discomfort around it for people who are in and out of being disabled by their particular whatever it is.
I prefer Currently Able Bodied to Temporarily Able Bodied. I think it gets around the assumption that we’ll all be disabled at some point, while still emphasising that lots of us who are currently abled won’t always be.
I, meanwhile, default to Currently Abled, since a lot of the time when I’m talking disability it’s mental illness, which dances in the space between mind and body.
Excellent point! As someone who sometimes-does-and-sometimes-doesn’t-really have mental health issues myself, that’s something I really should’ve caught on to.
Also, I’m very much a fan of the social as opposed to medical model of disability (which distinguishes between physical/mental/etc impairments and the disabling effect of certain bodies/minds not being allowed for by society/architecture/etcetcetc), which ‘abled’ fits a lot better. Thank you!
aoifeoriordan: I’m also a personal proponent of including mental illness under our spectrum of disability. That’s because I’ve spent the last year counselling university students who say things like, “Yeah, I’m depressed and suicidal, but I don’t deserve a special extension on my assignment; those exceptions are for people who are ACTUALLY disabled.” If disability is socially constructed, it’s something people can choose to identify with or not. I don’t think people with mental illnesses *need* to consider themselves PWD, but I encourage them to consider the option of seeing if they’re willing to because there are social and legal benefits and protections it can offer them.
At risk of going a little off-topic, I’m not sure we’re talking about the same thing when we say that disability is socially constructed? I could be entirely wrong here, but I hope you’ll bear with me just in case- I do prefer to be sure, especially online.
When I talk about the social construction of disability (and I’m speaking as a currently abled person, so MASSIVE grains of salt here!), I’m less speaking of it as an identity, than something imposed on people by society.
For example: most of the disability faced by a lot of wheelchair users is caused less by using a wheelchair instead of walking, than by living in spaces full of steps and narrow doors/corridors and teeny-weeny toilet cubicles and things that are the wrong height and people who make ridiculous condescending assumptions. It’s the idea that impairments don’t necessarily have to lead to the level of disability that they do, and that a hell of a lot of what we call disability is caused by ableism on personal/institutional/structural levels, as opposed to impairments.
Which is, of course, completely relevant to mental illness! Because mental health stigma & ignorance can bugger up people’s lives a hell of a lot more than the impairments of simply having a mental health issue.
It’s different facets of the same thing. When you view it as contextual, the boundaries get really blurry–what’s specific to disability, what’s the world just being crap, what’s normal human frailty, or what’s a different axis of oppression, everything like that. It all bleeds together and there are a lot of different lenses you can view things through.
So yes, I guess it is kind of different because I’m saying that not only is disability often constructed out of the makeup of things in the physical world, but also, our perceptions of things as disability-related, or people as abled or disabled, are contextual things placed on people after they already exist and not innate things. So labels are meanings you put on things, not immutable characteristics. I am abled in some contexts, disabled in others.
(Help I’ve fallen into postmodernism and I can’t get up again >.>)
I think social construction also a matter of where people draw a line between “medical condition” and “disability,” which can be pretty arbitrary. I’ve known people with, say, a bad back or knee that makes it impossible/painful/inadvisable for them to work out while standing or running but they can walk wherever they need to go and do everything they need to do, so they don’t consider that a disability. Someone else might consider having any limitation on their mobility to be a disability. How debilitating does something have to be in order for it to count?
In a lot of circumstances, I like the phrase “functional needs” over “disability” because it includes all medical conditions that need support, and I think it’s more pragmatic since it focuses on needs rather than symptoms. I need corrective lenses in order to function at a level I’m comfortable with; my mother needs crutches in order to function at a level she’s comfortable with. There’s the risk of false equivalency (my myopia doesn’t impact my life nearly as much as her MS affects her!) but it also doesn’t make a distinction that could lead to stigma or assumptions about who is and isn’t fully human, useful to society, etc.
As a person who is sometimes able-bodied and sometimes not (yaaaay flare-ups and remission cycles!), I personally use “currently able-bodied” for myself when in remission, but I have zero problems with someone just saying that they are “able-bodied.”
It’s when someone goes “Well, everyone has something they’re bad at, so really we’re all kind of disabled in our own way” that I am basically done with that person.
“It’s when someone goes “Well, everyone has something they’re bad at, so really we’re all kind of disabled in our own way” that I am basically done with that person.”
I briefly interned at a disability advocacy organization and my able-bodied supervisor refused to use Excel, claiming that her discomfort with computers was “her disability.” I ended up quitting because she was so awful.
“GJ” was a sarcastic “good job”, if you meant my post.
Query for those with assist I’ve devices: I live in a big city and ride transit frequently, usually with my kids. We see a goodly number of awesome chairs/prostheses/canes, etc, and sometimes I just want to say (if there is a chatty mood on the bus or whatever) “cool chair” or “that’s an amazing leg!” I never say anything, but I would love to hear from people if that would be a rage/snappy comeback inducing thing to say, or generally cool if it slips out someday.
Thanks for the kid tips above too. Its so hard to know what to say when your toddler busts out with a loud and intrusive question!
I also ride the bus a lot *waves.* For me, the answer is no.
Here’s why: the best compliment is from your area of expertise. For example, I wear shoes. You probably do too: if you comment “cool shoes!” then I feel like I am being seen. If you comment “cool chair!” then I feel like you’re paying more attention to the tech than my human self. It’s like talking about the service dog, instead of the handler.
Now if you do have expert knowledge, lead with that: “I’m a wheelchair mechanic, and I really like the way you made a Quantum R4400 from a R4000 INO.”
I’d love it, personally. But I got a bright blue cane and decorated it with seasonally-appropriate stickers, which is a sign that I’ve got an aesthetic interest in it. But it’s pleasant and rare to get genuine positive attention re: disability, especially on assistive devices I actually chose and expended effort on.
I am generally okay with “nice wheels!” or “righteous decoration!” or similar – you know, the way you’d compliment someone with awesome hair/an amazing t-shirt *and then move on* rather than acting like you’re owed a conversation as a result. (But I am much, MUCH more comfortable saying “nice wheels!” when I’m out & about in my own chair, or with a stick, than I am when I appear able-bodied – I have to work to remember that a curious stare from someone in a chair is obviously you scoping out their Frogs’ Legs or w/e, but if it’s someone who appears abled it’s much more intrusive…)
It’s not the Frog’s Legs, its the thick grease on your hubs :,)
I have an awesome cane. If people do not notice the awesomeness of my cane, they are being unobservant, because my cane: it is awesome. I don’t want people to dwell on it any more than any other aesthetics of my immediate person–it’s sort of like, “That’s a great hat” vs. “I looooove your hat! You look sooooo pretty in that hat! Oh my God it frames your face so well! And the color is so perfect for you!” etc. “What a great cane”: no problem. (I was going to use “dress” as an example, but dresses are on bodies, and canes are not on bodies, so…yeah. Different feeling to it. It is a lot purer as a compliment of my taste rather than my genetics.)
Back when I was really hesitant to speak to anyone I didn’t know, I saw a woman who had a cane that glittered like dragon scales. It was absolutely worth asking where she got it from, even though I never ended up getting one myself. We had a great little chat about how beautiful it was.
I think it’s perfectly fine to compliment someone’s cane or wheelchair if they’ve clearly put effort into making it look nice. I’ve seen canes carved with the American flag wound around it and the top as an eagle’s head, and it was amazingly detailed! It even had medals from the owner’s time in the Marines carved into it. The gentleman who owned it seemed positively thrilled that I’d noticed them, and happily told me about how he’d earned them in great length, and who had hand-carved his cane for him. If they’ve put obvious effort into making it look good, chances are they won’t get offended at you for noticing!
My two crutches, and stable partners LOL, only ever get to out with me one at a time! Somewhere along the years, one crutch ended up being called James as it was painted with flames, and the other crutch was called Max (Max has a silver/ spray painted theme). It always makes me smile when a friend notices which crutch is out with me on ant day, it was a very cool moment when a friend Ryan asked me one day, “Does James get jelous when you’re out with Max?” 🙂
Personally my general rule is to treat it like any other social interaction. If the person has very ‘open, please talk to me!’ body language, if the person is coming up and initiating talking, and so on. Same as I’d treat anyone else with a cool t-shirt or shoes or so on. Like there’s a guy who’s a fellow artist/vendor at a con I go to walking around with a ‘Look ma! No hands!” t-shirt on, and who (as best I can tell) was excited and eager to go up to others at the con and show off how his arm prosthetics worked. That sort of situation seems fine for a “Dude, that is so cool.” I’ve seen the same thing with costumers eager to show off how they’ve steampunked their stuff, or made it fit with their costume.
Because people are people, and social interaction is a little like an economics class of “Here are the formulas that will generally predict economic trends, except when they don’t.”
I have friends who complain just as much about the concern trolling of “You don’t want to draw ATTENTION! to your disability, do you?” and the lists of things they need to do to properly get across Bravest Little Disabled Person Ever. If they want to craft a steampunk limb, or get custom neon eyes, or cover their chair in stickers, or turn it into a dang Iron Throne that’s *purses lips* Attention Seeking Behavior and is going to Make (‘normal’) People Uncomfortable.
So like any other human interaction in the history of ever, it’s complicated.
Wait, decorating assistive devices is Attention-Seeking now? People claim it makes them uncomfortable? A friend of mine has plans to decorate his power chair like a vintage car. (And he’s super extroverted, so I’m sure he’ll love when people ask about it!) There are people who would feel threatened by that? What the what?
And, wait, wanting attention is wrong? Connection to other human beings is one of the basic human needs. Without it, bits of our brains wither up and die. It’s okay to put yourself out there in a way that communicates something to other people, and hope you get to interact positively with them. Wanting people to notice that you exist, or maybe even think you matter or care, is like being hungry or thirsty. It’s not dirty and wrong, it’s fundamental to your well-being.
I feel like the people who frown on “attention-seeking” feel like there’s a *demand* on other people to respond. Like, if I put stickers on my cane, I ~mysteriously compel~ other people with Crip Mind Rays to pay attention to me and be nice to me, which is a huge imposition. When… no, it’s still everybody else’s choice to pay attention to me or not.
I am curious as to whether the experiences people have had in this area – like your friends being concern-trolled, duaecat – are gendered. Since patriarchal culture loooooves to tell anyone who isn’t a cis-gendered man or boy that we do not deserve attention.
Thinking about it, I would guess that PWD of all genders get this kind of crap, but that people with disabilities who are not cis men might experience it differently, due to gendered oppression. Can anyone with experience weigh in?
Re; the gendering of such things, here’s what I see. When it’s a man, they get a response along the lines of ‘a real man wouldn’t need X’. When it’s a woman, they get a response of ‘You are faking this illness’. It’s a subtle difference at times but definitely there. This seem to apply to everything from temporary viruses, to mental illness, to physical disabilities. Men should just ‘man up’ and get back to work, women aren’t even really sick.
http://alexx-kay.livejournal.com/289581.html This was linked by Neil Gaiman a while back, and in the comments she discusses some of the pressures she’s under to ‘pass’, which includes not getting colorful eyes.
That post is SO COOL.
Super replies everyone, thanks!
The thing on this list that bothered me a LOT was the person who told the LW she reminded them of their daughter with Down syndrome. As if any people with any kind of disability, physical or intellectual, all just get lumped into one category, and their disability is the only thing people see — no individual qualities whatsoever. And this was coming from the PARENT of a disabled person. Eek.
Yeah that really bothered me as well.
it wasn’t “You remind me of my daughter because of:
-your beautiful hair”
-your wonderful, infectious laugh”
-she is also really interested in _____”
“You remind me of the only other person with a disability that I know because you both have disabilities and I am an idiot.”
I find “You know, there’s a reason I live six hours away from my mother” quite a good response to condescending comments.*
* My mum’s great, and I love her.
I have a Cerebral Palsy. I used to use a walking stick to get around and I wore dark sun glasses on sunny days. One time I went to Applebee’s and the hostess thought I was blind because she gave me a braille menu. My walking stick was black. It was not a white cane. People are stupid.
Teaching private Pre-K one year, we got this curriculum we were supposed to use. One of the suggestions was to teach the kids “how to say good morning in braille.” They meant ASL.
I have an invisible disability, so I don’t often get offensive remarks from strangers, but I actually get a fair number of them from people close to me.
I was diagnosed with epilepsy as an adult. Aside from now having sporadic seizures – more frequent than I’d like, but not an every day or even every month thing – nothing about me has changed. I’m just as capable as I was before the diagnosis. And yet, my friends and family seem to believe that I have magically lost all ability to make good decisions regarding my own health. I can’t count the number of times that I’ve heard things like:
“I’m not sure you’re allowed to eat/drink that.”
“Your seizures would probably go away if you changed your hours at work.” (I work second shift, so often get home at 2am.)
“You should really stop watching anime/playing video games.”
“What *exactly* did your doctor say?”
“You’d better get a roommate so that you’re not sleeping by yourself every night.”
“What do you mean I can’t come to the doctor with you?!”
and my personal favorite…
“Should you really be taking the subway/walking by yourself?”
You’d think that, given these people are loved ones, I can be frank and tell them to stop being condescending asshats, right? But no. My “nice girl” socialization sunk in hard, and it makes me nervous to be anything other than nice to people.* When I can, I do as the Captain says and respond with “Yes” in a very pleasant tone and then go about my business. Sometimes, though… sometimes we have to have a Talk. It’s not fun for anyone, but seriously… there’s only so much “give up all your independence because now you’re SICK!” that I can take.
*This a sucktacular phenomenon, and if I could magically fix something in my brain, I’d choose this before the epilepsy.
Oh, all the fistbumps of solidarity.
I can’t say that I have a store of snappy one-liners for ignorant comments about my epilepsy or policing my behavior/routine. I wish I did–I’d totes share them with you. But I just get pissy and rude. But I can tell you that it’s okay to respond however it is you need or want to. Some days I have the energy to get Righteously Angry and lose my shit. Some days all I can do is roll my eyes, sigh, and light up a cigarette.
I did, about four years ago, write a facebook note. I “came out” (I’d been hiding it to everyone I could possibly hide it from), told people I knew what the fuck I was talking about, so not to lecture me, and told them what to do, and more importantly, what not to do. And then I told them what to do if I had partials or grand mals. The cool people listened, the not-so-cool tried, and the shitty peeps kept being shitty. But I had more energy to deal with the shitty, and they eventually were either given the African Violet, or learned not to mess with me in regards to my epilepsy.
Maybe that will help?
A few years back when I went to visit a friend of mine, we took a trip to her local corner shop, me on foot and my friend in her wheelchair. The cashier smiled and greeted us and then said to my friend, ‘Oh, you’ve got a little helper today then, have you?’ We both did a double-take. ‘Helper?’ my friend snorted. ‘And who am I then, bloody Santa Claus?’ The cashier did a proper facefault, and then looked awkward and ashamed, but she didn’t find the courage to apologise. We finished our business and sailed on out of there. My friend said afterwards that she saw that cashier often, that she was usually a lovely and respectful lady, and that she probably felt really awful about saying something so stupid. But yeah, the Captain’s right. It wasn’t on us to make her feel better about that. It’s not on you either, LW. I’m sorry people are being such asses at you. You have every right to turn the consequences of their assiness right back on them.
Your friend is amazing. That’s the sort of comeback I’d probably think of in the middle of the night, a week after the offense. She thought of it at exactly the right time, and deployed it perfectly.
I have nothing to add. Except that all the things you described is awful, and I’m sorry that they happened.
Thank you! This advice is awesome covered in awesome-sauce. No one who treats another like described deserves a second thought. Leaving them with their own shame & guilt and moving on is great advice.
This is awesome! I use a wheelchair at times, and people talk to me to me completely differently when I walk vs when I use my chair. Then they get all offended if I say no to them helping me. I’m tempted to print out thousands of copies of this and hand it out to every idiot I come acros
Thanks for the “My Gimpy Life” link! I just watched all five episodes and became disappointed when I realised I am a measly seven hours too late to contribute to their season 2 kickstarter.
Being a wheelchair user for 45+ years, most of the time when have I encountered other’s who make inane remarks such as the ones described in the article, I simply, cheerfully, say, “thank you” and then go about my day as usual. Should you encounter those who speak loudly to you b/c you’re using a wheelchair, simply lower your voice when responding to them and they, I’ve often found, will end up lowering theirs. Many non-disabled people will assume those of us with physical disabilities are always intellectually disabled as well. Find a common ground and attempt to engage some of them in conversation. That leads to better understanding for everyone rather than immediately taking a defensive stance which, most often, breaks the lines of communications and, therefore, nobody wins.
Yeah, but sometimes I *don’t want to keep the lines of communication open*, because I am a fiercely independent autistic introvert. Sometimes I am happy to talk to peple on public transport or at the shop or whatever – but! I prefer those conversations to be about shared interests and fandoms, not about “what’s wrong with [my] legs” or their sister’s in-law’s dog or whatever. And I am *totally cool* with the idea that it ought to be okay for me to tell people to leave me the hell alone – I am not a teaching example and I am not public property just because I’m young and visibly disabled, and I would rather spend my energy on stuff *other* than being smily and polite to people who have been rude (however well-intentioned-ly) to me.
Kaberett, you hit the nail on the head. I’m a person, not a teaching moment. I should get that on a t-shirt.
Yeah, and basically ever source of advice ever from anyone amounts to “suck it up and smile.” But sometimes I’m tired of going through life having to perform gratefulness and passivity, and I want to establish stronger boundaries. In that case, blogs like these by and about PWD are literally the *only* place I have ever gotten support to do that.
Sometimes breaking the lines of communication is winning. I don’t have time to educate every person I meet about my chronic illnesses. Many people don’t even want to be educated. They don’t want me to explain to them how half of their inane, well-intentioned comments are ridiculously ableist. It doesn’t matter if I’m amazingly articulate about the subject or swear up a storm. If they want to learn, they will learn despite me being defensive and if they don’t want to learn, they won’t learn no matter how kind and benevolent and okay with my conditions I am.
Playing nice has its uses. I do my best to play nice with my employers, colleagues, and professors. Sometimes it even works and that is awesome. Other times I have to explain to them, as nicely as I can, that certain expectations and behaviors of theirs violate my legal protections. Sometimes that doesn’t work and it isn’t worth pursuing and I have to break the lines of communication with people far more important to my life and future than random strangers. I barely have the time and energy to handle the important people. There is none left for random strangers who think I’m an addict because of how I look or anyone random at all.
Plus I already understand why most able-bodied people are the way they are. I know what they think. I do not personally gain anything from educating them.
I like the spunk and fire of the piece. And I get how irritating and infuriating it must be. But I actually suspect most people are just trying to be nice, endearing, sympathetic. I’m sure there are folk who just avoid dealing with you–because it makes them feel awkward for any number of reasons; they aren’t confident about to handle the situation or aren’t sure they will successfully treat you the way you wish to be treated.
Then there are the folks who dive in and try. And their voice comes out sing-song or they call you Sweetie. I’m not sure they deserve a profane and cynical response.
It’s good that you write about this, so that more people will be aware of the various responses that are not appreciated. But hey, in real life, if you’re secure in your own intelligence and worthiness — then give the socially clumsy well-meaning jerks a break.
Leslie, first of all, the LW isn’t actually swearing at people when they make mistakes– they are describing a common, frustrating problem with the kind of language that most people use when they feel that way. To suggest that people with disabilities are never entitled to anger is just as problematic as talking to them like they are children, because it suggests that people with disabilities are only allowed to experience and express positive emotions, especially when they interact with the able-bodied. The LW wrote in to ask how to respond in a civil way that ends unpleasant interactions. As people have said upthread, it is not everyone’s job to educate all the time, and people are entitled to be annoyed by bad behavior, rather than demonstrate that people with disabilities are always patient and polite. Sure it’s good not to swear at people when they make mistakes, but it’s also important that people with disabilities not get told all the time that the feelings of able-bodied people are more important than their own needs and dignity. Second of all, part of this problem is that the intent of the people doing the condescending isn’t relevant: they may have been trying to be nice, but they are making the LW’s life difficult (and people who are ‘trying to be nice’ to the visually impaired by steering them in the wrong direction are actually doing harm!). My definition of “giving people a break” is generally to avoid yelling, profanity, or lectures– but that doesn’t mean I always have to be pleased that someone has tried to be “nice” and actually made my life worse.
See, the thing is? In this culture, women are socialized to “be nice”, to “give the socially clumsy well-meaning jerks a break”. And that’s an attitude that gets challenged here, a lot.
If you have a disability, that expectation of “being nice” is a strong one, and it’s damaging, and it’s bullshit. kaberett nailed it, just up there: my going about my business in public does not, in fact, equal an opportunity for anyone to learn all about how to treat the cripples, and if someone is uncomfortable, or awkward, or patronizing, it is not actually on me to soothe them or give them a cookie.
The thing is, a lot of these “Clumsy well-meaning jerks” tend to take me by surprise by bringing up my disability in a public place. If I’m in a bakery trying to pick up a birthday cake, I don’t really want to get into a discussion with the clerk or the person next to me in line about “what’s wrong with your hands.” I don’t enjoy having the person sitting next to me at the theater or in an airplane seat diagnosing my rheumatoid arthritis, then lecturing me about bee sting therapy and herbs and acupuncture, because that worked for their godmother’s mom. My medical concerns are between me and my rheumatologist. Even if you’re a doctor, you’re not my doctor, so unless I set up an appointment with you, STFU.
Or, and I don’t get this so much now that I’m older, plain disbelief or awws of pity: “But you’re so young!”
At the end of the day, it’s not their intent that matters. It’s the fact that they single me out as different, as other, as less than. I am not a person like them, I am Disability Girl.
And after three decades of being treated like this, I have no more spoons. Mind you, it doesn’t mean I curse at them. I am always polite. But I get away from them as soon as possible.
And what about the socially awkward or sometimes-insecure people with disabilities? Why should they have to assume that this time, the rude or condescending person really means well, and make the effort to be polite to a stranger who hasn’t been polite to them and treated them as equal adults?
This reminds me of the “but he’s just socially awkward” excuse for pushy or creepy men, with no consideration for the possibility that the people (usually women) they are being pushy or creepy at might also be socially awkward.
I get what you’re saying, but I don’t see anyone advocating swearing *at* people doing this, except for ‘fuck you’ to those asking extremely personal sexual details. I don’t think anyone thinks it would be helpful for a good idea to scream “Fuck off!” at someone who was condescending, or spoke too loudly, or anything like this. I really liked most of the responses because they effectively shut down that particular annoyance and also self-demonstrate that it’s simply inappropriate and not needed. Using a sing-songy childish voice to speak to someone who is being very blunt and short makes the first person seem even more inappropriate and ridiculous, I think. It might make them think about not doing it the next time.
I think it is entirely appropriate to demonstrate to some condescending, patronizing person that they are screwing up, by responding with a less-than gentle, kind, or friendly tone. I mean, come on. Intent is not magic, here or anywhere else. Some people are really awkward — I am really awkward! — and some people screw up. I have screwed up!
When I screw up with someone, I don’t want them to blow sunshine up my ass, I want them to draw a goddamn boundary so that I know what I did and learn from it. I don’t want to be gently guided down a primrose path of maybe someday realizing the essential humanity of the lady using a wheelchair!
I know that some others do not want that, they want their privilege to be validated and their prejudices to be honored. They want “I didn’t mean to be a jackass!” to count. Well, it doesn’t, and it shouldn’t. If someone’s a jerk, then they deserve the same response whether they meant to be a jerk or not.
Also, I have a whole box of fists of rage at the concept that “if you are secure in yourself, other people’s prejudices don’t matter.” That is such a load of bollocks right there, I cannot even tell you. That lady there might not be personally affronted at that moment, but other people’s blindness to their privilege is how privilege works, and how people without privilege — say, I dunno, people with disabilities — stay screwed. It’s how buildings stay inaccessible and how I only just learned that “She’s in a wheelchair” is a jerk thing to say. The stuff adds up — and so does a day full of microaggressions, even if you are not significantly insulted or upset by any individual one of them.
Gah! I am actually really angry with you, because your argument, it is used against *EVERYONE*. Women. People of color. Fat people. Fat women! We get that bullshit all.the.damn.time. NO. NO patience for the “socially clumsy” jackasses! No “hey, you’re all secure in yourself so no skin off your nose what’s your problem”! No to your assertions that we’re all screaming profanity at someone who screws up a little bit, when actually people are not doing that at all, they’re just not going along with the othering, patronizing ickiness.
I mean, holy fucking shit, dude. They’re “just trying” and oops! it comes out as sing-song and calling them sweetie? That is not what “just trying to treat someone like a person” looks like. It just is not! It’s “just trying” to treat them like a pet or a child, and you can damn well tell the difference when it’s happening to you. Honeybunch.
I am applauding you right now, but softly, since my hands hurt a bit today.
I know this is late but I just had to say THANK YOU for this reply. Especially, ‘Also, I have a whole box of fists of rage at the concept that “if you are secure in yourself, other people’s prejudices don’t matter.’ That is such a load of bollocks right there, I cannot even tell you. ”
That is exactly why condescending victim-blaming loads of CRAP like “No one can make you feel inferior without your consent!” (chirpy voice! fake smile! glittery hearts!) make me SO INCREDIBLY ANGRY. Like, HULK SMASH angry. What? You mean that there is an ENTIRE CULTURE out there BASED ON making me and WHOLE CATEGORIES of other people FEEL INFERIOR but it needs my CONSENT?
This is the FIRST I’ve heard that the fucking cultural steamroller of sexism, ageism, racism, homophobia, AND ABLEISM needs my CONSENT to beat me down, belittle me, make me invisible, deny me things, or murder me.
*Gets out bullhorn* BULLLLSHIIIIIIIIIIIIIIIIIIIIIIT.
Ahem. Thank you.
The scripts from CA and commenters are awesome, and I’m saving them for if I ever find myself with visible disabilities.
One question, though:
I realize they are doing it to insult you and don’t mean it nicely …
Why would that be the assumption? While they’re being obnoxious asses for damn sure, and their behavior earns them whatever blowback their recipients care to give, there’s at least a possibility that they mean well. Maybe I’m naive, but it’s been my experience that deliberately cruel people tend to be more direct in their cruelty.
I think people often don’t intend to be insulting, but that kind of comment is based on assumptions that people with disabilities are less than adult/less than human. Not everyone gets to examine their assumptions, granted. But if you are, at root, saying to somebody, ‘You are not a human like I am’, then maybe you deserve to be seen as insulting.
Unfortunately, many people grow up thinking they are being kind by treating people with disabilities as less than human. Then when they get told this is bad, they can flail around not knowing how to relate, and get defensive. Some people probably need more encouragement to apply the idea of ‘treating everybody as an individual who deserves respect’.
Also, a few people are genuinely horrified by disability, and say or do mean things while pretending to be kind, to push you the f*ck away. I think some concern trolling falls into that category. They don’t want you to exist as you are, because you remind them how vulnerable they are. So they try to dismiss your agency and needs, or suggest ways you could not be disabled any more and thus not be a problem for them. When you’ve been on the receiving end of some of that, it’s clear when people are being kind to be cruel.
Thanks for the clarification. Ugh. Also …
So they try to dismiss your agency and needs, or suggest ways you could not be disabled any more and thus not be a problem for them.
This is a category I’m familiar with, albeit only secondhand. It’s a good example of not insulting the PWD on purpose — they don’t know how dismissive they’re being because they haven’t given it a moment’s thought. Their dismissiveness IS insulting, however. One of these days, I hope to find a way to make them aware of that in a way they actually understand.
This is just beyond perfect.
I have a question of etiquette along these lines, if anyone feels up to answering. So, if I’m working (coffee shop) and someone in a wheelchair comes up, I’ll address them to take their order. If the person with them jumps in to speak for them, who should I address at that point? Should I assume the two are OK with that dynamic, or not? This has happened to me a few times and I’m never quite sure.
(Slight tangent) We used to have a regular customer with Down’s syndrome (I think.) He’d come in by himself, and someone would be waiting for him outside in a car. My two coworkers would *always* make a huge fuss over him, how awesome he was, and he seemed to really like this. I always felt a little uncomfortable doing this, so I would address him as I would any other customer, stay professional, friendly but not exuberant. My coworkers thought I was doing the wrong thing by not acknowledging him more than that. Even aside from condescension issues, I am just not an effusive person to begin with, so it would feel really awkward for me to behave like that with anyone.
I think it sounds like you’re doing the right thing with regard to your customer with Downs. Acknowledge them in the same way you would any other regular, but don’t be all ‘Wow a DISABLED person out ALONE!’
I’m currently able bodied, so I’ll leave the other query for someone else.
Yeah, I don’t know that I’m the person to answer, but I am remembering the discussion on pity friends we had a while ago.
I would say: Continue to address the person, unless they indicate to do otherwise.
If a person needs an interpreter *for any reason* — because they are deaf/Deaf, because they can’t speak well, because they don’t like to speak, because they’re shy or socially anxious, because they speak a different language, whatever — they are still a person, capable of making their own decisions. The fact that the words are coming out of someone else’s mouth doesn’t matter, because the someone else is speaking for them.
Also, I think you’re taking the right approach with your customer. If you’re the sort of person that greets regular customers by name and chats with them, by all means do that with someone with Down’s syndrome or someone in a wheelchair or whatever. If the person says “I’m so excited because this is my first time going out alone” or whatever, “hey, congrats” is appropriate. But “omg you are SO AMAZING because you are doing regular things despite being irregular” is … meh. Even if he enjoys it, that doesn’t mean he isn’t also a little awkwarded by it.
And even if someone has an interpreter, it’s my understanding that it’s still more polite to address *them* directly, while giving time for interpreting as necessary, rather than talking to the interpreter.
I have the opposite problem. When I go out alone in my powerchair people realise I must be at least vaguely competent to be out unaccompanied. If I use my manual chair I need someone to push it for me so people assume that I must be a vegetable if I need to be accompanied. I daren’t go out in either chair around Christmas time for fear of being chased around shops by creepy Santas wanting to to know if I’ve been a good girl this year. [Get away from me creepy Santa or I won’t be good for much longer!]
The creepy Santas gave me a chill down my spine. BACK, CREEPY SANTAS!
(Accessibility note: For some reason, the comments form won’t display properly in Chrome, and I can’t tell for certain which fields are meant for email, URL, and name. My prior comment is displaying my website as the “name” rather than the other way around.)
While I do not have an intellectual disability, I am developmentally disabled (I’m Autistic) and multiply disabled, and I’m very disappointed by the myriad of comments that seem to rank disabilities by suggesting that it is inherently undesirable to be intellectually disabled as a base assumption that everyone ought to accept. Using ableism to condemn ableism doesn’t work. Yes, it is wrong and ableist to infantilize and patronize disabled people. It’s also wrong and ableist to proclaim not being intellectually disabled as a badge of honor or a symbol of one’s value and worth, because the flip side of that coin is the presumption that being intellectually disabled makes a person less valuable and less worthy — if not outright less human — and in this particular context, also justifies paternalism, infantilization, and patronizing behavior toward intellectually disabled people.
Fair comment Lydia, claiming “I’m not to be intellectually disabled” effectively ranks people with disabilities in a heirachy, where people with multiple and or intellectual disabilities are ‘less than’ in comparison to other people with maybe one physical disability. Effectively this is the same ableist way of ranking people with disabilities as a group that are ‘less than’ people without disabilities. If we (as humans) feel the need to categorise and label each other, ‘ranking’ doesn’t really need to come in to it.
Tangent, so feel free to ignore, but:
Does anyone have any advice for how I can be respectful of my aunt who has Alzheimers, while still keeping her safe?
I am occasionally in the position of being her carer (for a few hours every month, most recently this Saturday), and I find it emotionally shredding.
She is inherently a very sweet lady, but one who has been protected all her life by a loving husband. He is an active 78 year old, but has arthritis etc. and his caring role is exhausting, which is why I go when I can.
She was a brilliant aunt when I was a teenager in particular, and I have a lot of affection for her.
This all makes it very difficult to know how to respond respectfully when she gets a fixed idea.
She is now physically disabled – she can move herself from a wheelchair to a sofa if someone holds her hands and explains the sequence of movements – but her dementia means that she forgets this. So when she and I are talking, she will suggest going for a walk, or want to do housework.
She kept on wanting to take up the dust-sheets this time, when I knew they needed to be left down, and she would have fallen if she had tried. And she would speak with the authority of aunt to niece, and with the authority of a woman in her own home, and try to insist on doing the work.
And this would be repeated every two minutes. Similarly for wanting to drink a cup of coffee which was much too hot.
Is there a respectful way to contradict someone?
(As well as this she forgets who I am, thinks I am my mother or one of my siblings, asks me how my children are and whether I miss them – I don’t have any – and so on.)
Her condition is degenerative of course, so every time I go she is a little worse.
Does anyone have experience of this, or advice?
Oh yikes. That sounds so difficult! I don’t have any experience with this, but if there is a nurse hotline where you live, that might be a good source of advice for you. Or maybe you could stop by an assisted living centre and see if any employees are free to chat? Or maybe to grab a coffee with you when they’re off?
There are so many instances of elder neglect and abuse that I would imagine that most people who work in the field of caring of elders would be pretty happy that you are providing this care to your aunt and that you care so much about doing it well. And in a way that will not cause you to burn out! Your emotional exhaustion is real, and in taking care of your needs, you are making sure that you will be able to continue providing care for your aunt.
Maybe there are message boards or listserves or facebook groups for people providing this kind of care? I’m just throwing out ideas and hoping maybe one of them will be helpful. I wish you the best of luck with this. Your aunt and uncle are really lucky to have family like you.
Thanks for the kind words but really what I’m doing is only slightly more than nothing. What my uncle is doing is incredible.
That sounds really hard. It makes me think of a talk I heard the other week about designing systems for people with FASD, who have severely impacted ability to learn cause-effect and consequences. The big thing I heard was, “Don’t set them up to fail.” If you know they have a tendency to steal valuable things, don’t leave your cell phone on the table when you leave the room, because doing so and then saying they should have thought the consequences through before they did it is just expecting too much. If they keep breaking into the group home closet to steal cleaning supplies in the middle of the night to clean their room, go get some separate cleaning supplies they can just keep in their room and use any time instead of explaining every time that they should have waited until morning.
Which would mean trying to design things around her: putting an ice cube in the coffee so that it’s not hot when you give it to her. Finding something housework-y that she can do without hurting herself or ruining the house. You may not be able to just stop her without unpleasantness, but it’s quite likely she can be redirected.
Thanks, that is really helpful! Particularly the ice cube idea which has a lot of applicability.
I will try to think of creative applications.
One thing I do is talk about things which are bothering me about my life, as it gives me a chance to think things through out loud, and avoids awkward silences (my aunt is a lot less random when she has social and environmental cues for guidance).
Seconded! My Granny also had dementia, and the constant repetition was tough. Having to remind her over and over who I was and where we were.. Yeah, that.really takes a toll.
Another practical suggestion is to try and redirect things – rather than getting into a conversation about why she can’t do x, saying you’ll do that later/another time but… And then asking about something she loves to discuss or suggesting doing something else might work. Don’t feel guilty about lying by saying she could do something another time if that isn’t really possible, it’s sometimes kinder to allow that to remain a hope than engage in an upsetting conversation that reminds her of her limitations.
I don’t have anything really helpful to say, except that I know that dealing with Alzheimer’s is so, so hard.
Also, the circular conversations are very common. What I did was “not to notice” that we had spoken of those things before (because she honestly couldn’t remember) and do my best to direct the conversation so that it tended towards more, um, linear topics? (Not the weather!). It doesn’t stop the same question about, say, whether you have gotten the porch painted yet, but it can help a little.
If someone demanded they get called ‘ma’am’ they’d get called ‘go f*ck yourself’ pretty bloody quickly. Wheelchair or not. Maybe that’s a cultural thing, but no one in this country would get called Ma’am or Sir unless they were the Queen or a Knight of the Realm.
Well, what do you suggest the LW say in response when someone calls her diminutive sexist baby names?
Huh? In the southern UK, it’s my experience that people do routinely get called “sir” or “ma’am” in shops (I Really Notice This because I’m genderqueer). Never happened to me in the North, which is lovely, especially because terms of address are pretty gender-neutral oop t’Norf as far as I can tell.
Where the fuck do you live?
It’s considered pretty standard and very normal and also respectful in many communities/areas/contexts. Think about that before you go mouthing off about how they would be called “go fuck yourself.” Try that with my black great grandmother and see if your skull is still intact after she smacks you upside the head with her cane perhaps her power chair if she accomplished the most epic wheelie of all time.
Regardless of where you are or how you live, I find it hard to believe that you’re completely unaware of the fact that some people consider this to be a way of showing respect. Off the top of my head – many old people, Black people, southern people – in the U.S. feel this way and if you’re not in the U.S., still unwise to call other people’s preferred nomenclature bullshit so boldly.
Wow. I left a comment, early on, that said this post was valuable and educational for some folk who weren’t sure how to handle some situations, but dove in anyway. It suggested that some of those who misstep or misspeak ARE trying, and might fall somewhere short of being complete social Valdemorts. But my comment didn’t make it into the thread. I guess empathy is only supposed to go one way on this blog.
Your comment is in the thread. I was one of several who answered you. Your follow-up, though, makes me regret engaging you, then and now.
OK, so I am not in charge of this site, but I pitch in when I have a moment to clear the spamfilter, because I know it sucks to compose a thoughtful comment and have it disappear into the void. Almost everything re-emerges eventually even when it’s just CA doing the spam-filter-clearing, but still… there is something disempowering about putting your thought out there while a discussion is hopping, only to have it languish in obscurity until CA (whose schedule can get pretty all-consuming) can find a moment to set it free (after everyone else has moved on).
In other words, I come at spamfilter-clearing from a “free people’s comments!” angle. Plus, I’m a free speech kind of gal. I believe that in most instances, as tempting as it is to squelch offensive speech, the best answer to offensive speech is more and better speech! So I delete what is clearly SPAM without compunction, but I pass through (i.e., expedite) just about anything that looks like a legitimate contribution to the dialogue, even if I don’t agree with it, or even if it is someone disagreeing specifically with me, or kinda rude. It’s only if I think that a comment might qualify as damaging to a person or the community as a whole that I’ll refrain from clearing it through. Even then, I don’t actually discard anything except duplicate comments and spam, even if I think the comment is truly obnoxious and I can’t imagine CA letting it through. I just let it sit ’til CA can take a gander at it and make that call.
As for CA herself, she definitely doesn’t discard comments just for disagreeing with her — even pretty harshly. Or for saying hideous things, sometimes. She smacks them down in plain view. So the percentage of actual comments that doesn’t get through is minute, and the idea that only people who toe the party line get their comments posted is just bunk.
That being said, as the site policies make clear there is no entitlement to have your comment posted. One of the things that makes this blog special is the moderation. Trolls know they will get no foothold here! Some comments are so very offensive that the LW or another commenter or the community just shouldn’t have to be subjected to them; it would make this feel like an unsafe space for people to reveal vulnerabilities and foibles, which is a pretty important part of what happens here. Sometimes a comment violates a specific site rule, or what CA has said she wants for that particular thread. And some arguments have been given quite enough airtime here, and when they crop up in yet another thread it’s like “Really? Do we have to have this discussion again? No, not this time I don’t think.”
I can not address what happened to your specific comment, because I can’t swear that I remember what it was. It is very remotely possible that your comment was deleted by accident; that has happened once that I know of.
However, I do remember a comment that was along the lines you describe, that I may have let “sit” for CA, because I thought it was over a line in terms of excuse-making for obnoxious behavior. As we’ve discussed here many a time, intent is not everything. My now-deceased grandmother was not “intending” to be racist or offensive when she used to make horrid generalizations about black people or Jews, but she was. Each of us is responsible for what comes out of our mouths (or flows from our fingertips). It is not the responsibility of people who have been legitimately offended to suck it up and make excuses because that foul thing that came from someone’s mouth/fingertips did not necessarily represent a charred, hopelessly irredeemable soul. On the contrary, their first and foremost loyalty must be to their own dignity and self-respect. And the way people learn to reconsider and reform their speech/actions is generally when someone has called them on it, and they have the maturity to say “Oh. Shit. Yes, I see how that would be offensive. I am aghast that that came out of me.” Both CA and I have had that experience with being called on our shit on this very site, and are glad of it. Not that it was fun, but….
So no, we as a community tend not to say “you should be nice to the person who treated you appallingly because they may have been trying to be decent and just failed miserably.” We provide scripts for constructive communications, and we cheer for people’s inspired comebacks. Not because we are never the people who make the gaffe, but because we agree the world is not a better place when people let the asshattery slide. And it is just possible that that is why your comment did not get through. We may both (and it would have been both) have felt that it was just too much in terms of putting the burden on the LW to forgive and understand and give a shit about people’s hidden kindness when what is on display is condescension and offensiveness.
I hope that helps you understand?
* Disclaimer: I’m speaking only as to my thought process, not CA’s. We have not conferred about this.
Too funny that I went through all this about a comment that Jennifer and/or I let through all along! Still, I’ll leave this in case anyone’s curious about the process.
What a good thing you’ve provided us with an excellent example of not getting snarky over something that makes you unhappy but is probably actually a well-intentioned mistake.
A+. Would lol again.
Both your first constructive comment and this entitled, shitty comment did make it into the thread. They just may not have done so immediately, because a) possibly you were a first time poster, in which case everything is held for moderation until we can get to it b) sometimes stuff from established commenters gets caught in spam filter and need to be liberated…when we can get to it. We check and clear things multiple times/day, but I refuse to apologize for not monitoring the moderation queue 24-7.
Man– my *favorite* incident of all time happened at the Mall of America.
I’m the host to a few disabilities, most of which are invisible, or usually invisible. There was a period of time in which I was in a wheelchair. One day my friends and I decided to go to the Mall. We’re waiting to get on the elevator, and this guy comes up to me.
“Can I pray for you?”
I’m an atheist, but my general attitude is that if you want to pray for me, go for it. Whatever makes you feel better. (If you’re going to pray for me INSTEAD of doing something helpful, that’s where I have issues).
So I said, “Sure, if you’d like”, thinking that he’d go home and do it later or something. But no. He did a LAYING ON OF HANDS.
SOME STRANGER KNELT DOWN IN THE MIDDLE OF THE MALL, RESTED HIS ARMS ON MY THIGHS, AND PRAYED FOR ME TO WALK.
I was in shock. My boyfriend was in shock. My friends were in shock. I just kind of sat there until he finished and walked away.
Afterwards, I came up with the best comeback, but of course it was too late. If I’d been quicker, I would have stood up (I had limited mobility at the time), yelled “I’VE BEEN HEALED”, and then fallen over. “NEVERMIND”.
Opportunity squandered, I tell you.
😀 That would have been awesome. (Variation if you’re blind: “I CAN SEE!” Turn to the person who prayed. “THAT YOU’RE A JERK!”)
Omg, I think you win the Awkwardest Story award. Prize = dubious.
I swear the Mall of America is a vortex for weird behavior. Is it okay if I imagine the guy wearing one of those big plush Spongebob hats?
As a speech-language pathologist in training I would just like to say that it is *NEVER* appropriate to talk to an adult in a baby voice, regardless of how impaired their ability to understand language is, how much of an intellectual disability they have, or how significant of a hearing loss they have. It makes me upset that people assume physical disabilities imply intellectual disabilities, but it also makes me upset that anyone thinks this is ever appropriate behavior.
An appropriate change would be doing something like speaking in short, simple, single-clause sentences in the active voice.
Do you have a consensus on whether or not to fill in the words for someone who’s stuttering? It seems rude to me but I’ve heard arguments both pro and con. Maybe it’s just different from person to person.
Also, thanks for doing such great work! I had hearing problems as a kid and as a result my speech was a bit f*cked up. I cannot say how much speech therapy helped.
IME from talking with friends, it depends on (a) the person and (b) your relationship to them.
Not having a disability, I can’t offer a perspective on the LW’s specific issue, but I can relate to having people treat me like a freak when they realize I am Different From Them and therefore Not Entitled to Basic Human Respect.
I’m a queer woman in an urban area, and recently I was en route to my girlfriend’s house in the middle of a thunderstorm. I hailed a livery cab and proceeded to give the driver directions and respond to his small talky questions normally. This is the conversation we had:
DRIVER: So, do you live in [area I’m driving you to]?
ME, to myself: Should we elaborate? Sure, why the hell not, we like being out even when it’s inconvenient.
ME, to him: Nope, I live in [other area]; I’m headed to my girlfriend’s place tonight.
DRIVER: Oh. Ohhhhh! Your girlfriend’s.
DRIVER: So … you have a *girl*friend?
ME: *eyeroll* Yep.
DRIVER: [long pause] Can I ask you a question?
ME, to myself:
1) Here we go. He wants to ask about The Gay.
2) Should we engage?
3) He’s probably going to say something ignorant and possibly offensive, but maybe it’ll be pretty harmless, and I’m not feeling too emotionally exhausted right now to deal with it and maybe even root out one little seedling of ignorance in a well-meaning stranger.
4) Okay, let’s go for it.
ME, to him: What’s your question?
DRIVER: Why don’t you want a boyfriend?
ME, to myself: Someday we could write a 600-page book on the topic of why we don’t want a boyfriend, ha.
ME, to him: I want to be with this girl.
DRIVER: Oh, you want to be with this girl, okay. But … how does it work between two women? You know, the intercourse? [turns around in his seat to face me and flops his hands against each other weirdly]
ME: That is NONE of your business. I’m not going to answer that.
He then proceeded to have a shamesplanation meltdown for the rest of the drive, during which he got us turned around several times before finally dropping me off (three houses away from my girlfriend’s despite my very specific directions), apologizing profusely right up until the moment I shut the car door and dashed off through the rain.
After years out of the closet, I’ve arrived at a zero-tolerance policy for this species of rudeness. Zero tolerance doesn’t mean you are obligated to sit the person down like a three-year-old and explain to them what they’ve done wrong. For me, it usually means simply informing them they have fucked up in a huge way and I’m not going to engage with them any further, and then leaving them to sort their shit out on their own. I do not owe them a flow chart demonstration of exactly how they’ve just been a total asshole. They can fucking Google it.
DRIVER: Why don’t you want a boyfriend?
I’d smile sweetly and say “Why don’t you?”
That was exactly what I wanted to say to him when I thought of it two hours after the fact!
In case this one hasn’t been mentioned yet, I am a big fan of (in appropriate tones of shocked, mortified or stage whisper) “Wow/OMG, that was really rude, you must be so embarrassed!”
Then I just sail on by and leave them to their implosion
I’m kind of overwhelmed here. I have an invisible sometimes disability. I don’t think too much about how people talk about disability. I come from the premise that everyone is doing his or her best and means well, with the exception of obviously rude people. I guess I got that from my dad who had MS. He ignored both offensive mistakes and asshats alike and just went about his business.
Everyone has the right to feel how they feel about these topics and it is interesting to read all of the comments. Just thought I would share my own thoughts.
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