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September 3, 2009 8:17 AM   Subscribe

The Deal with Disability "Hey, I’m Eva. I’m 26 and a recent college graduate. I like to write, to take digital photographs, and just chill. But this blog is not about what I like. This blog is about how people treat me. You see, I am physically disabled. Actually “severely” physically disabled. I have Cerebral Palsy, which for me means I can’t walk, speak, or use muscles in traditional ways. I use a power wheelchair to get around and spell out what I want to say on a letterboard. This blog will be videos of people treating me bizarrely."

(via bitch)
posted by heatherann (107 comments total) 79 users marked this as a favorite

 
That blog is awesome. I love the snarky but not bitter tone. Thanks!
posted by Sidhedevil at 8:25 AM on September 3, 2009 [2 favorites]


Interesting blog, I look forward to reading it when it's a little more fleshed out.

My dad had a great comeback. He calmly said “Yes, I know she drools.” Then we walked/rolled away.
posted by jessamyn at 8:27 AM on September 3, 2009


Yup, this is the best of the web. Will be checking this out often. Thx!
posted by ruelle at 8:32 AM on September 3, 2009


This is so awesome. As an aside, my significant other works with a person who has cerebral palsy, and just based on a few of the encounters, similar to those documented on this blog, that I've seen her deal with, I can safely say that were I in her shoes, I wouldn't have nearly the patience or kindness she does. She puts up with all of the indignities, big and small, with remarkable aplomb and is almost unfailingly kind and cheerful to everyone she meets; were I in her place, I'd be spending every moment trying to communicate my need for an automatic weapon and a wheelchair-accessible clocktower.
posted by infinitywaltz at 8:33 AM on September 3, 2009 [5 favorites]


LOLABLED.

Love it.
posted by rokusan at 8:33 AM on September 3, 2009


Excellent - can't wait to see what she writes next.
posted by futureisunwritten at 8:33 AM on September 3, 2009


Great find. She sounds like she has a good head on her shoulders!
posted by roomthreeseventeen at 8:34 AM on September 3, 2009


This is fascinating. Awesome post.
posted by Lord_Pall at 8:34 AM on September 3, 2009


Not much there yet, but promises to be interesting. Look forward to reading more as she writes it. Nice find.
posted by Aversion Therapy at 8:38 AM on September 3, 2009


Interesting blog, although I wish she allowed comments.

OTOH, did we really need a "More Inside" merely for a (via)?
posted by ChurchHatesTucker at 8:40 AM on September 3, 2009


I watched the first video. She had to wait 15 whole seconds for somebody to move a chair for her.

Fucking animals.
posted by Bonzai at 8:41 AM on September 3, 2009


Comments are allowed; it's just that they're under the post title, rather than at the bottom of the post.
posted by infinitywaltz at 8:41 AM on September 3, 2009


She had to wait 15 whole seconds for somebody to move a chair for her.

I think the point is that her aide had to do it since it became clear that no one who was actually sitting at the table where the empty chair was would do it.
posted by anastasiav at 8:43 AM on September 3, 2009 [1 favorite]


I watched the first video. She had to wait 15 whole seconds for somebody to move a chair for her.

Fucking animals.



I know, right? And these disabled people get their own bathroom stalls too! Give 'em an inch, they'll take a yard, that's what I say!
posted by R_Nebblesworth at 8:45 AM on September 3, 2009 [5 favorites]


Great blog, great post.
posted by Optimus Chyme at 8:45 AM on September 3, 2009


About 3 weeks back I was on a flight from Chicago to NYC, and with my status I was upgraded to a bulkhead window seat, where they often seat people with disabilities. On this particular trip, seated next to me were two delightful young ladies, the one in the middle seat with Cerebral Palsy. They were just-graduated high school students on their first trip-away-from-home-without-the-parents, and both consumed with that excited-maybe-a-little-nervous-but-too-giddy-to-care exuberance. They were headed to NYC to see SHOWS! They both turned out to be rabid theater nuts and more than a little obsessed with one of the Jersey Boys.

We got to talking about how I was home on break from my work in Africa, and how I got into that, and then they discovered that I had lived in NYC for 6 years before leaving. This delighted them even more and they started peppering me with questions about the city and the people who live there. Is it safe? Where can we eat that's cheap? Are all New Yorkers mean? etc. I told them how to sneak into the second half of a show by standing with the smokers during intermission.

It was at about that point in the conversation that I realized I had shifted from relying on the non-disabled friend in the aisle seat to translate the young lady's garbled words for me, because I was picking up on her "accent" or whatever you call it, and it was becoming a more direct conversation.

"Yeah, but you think they're not going to notice *ME* trying to sneak in with the smoking crowd?"

I felt bad for a half-second but she didn't miss a beat.

"But if we buy some cigarettes..." with an evil grin.
posted by allkindsoftime at 8:45 AM on September 3, 2009 [28 favorites]


lolol
posted by sswiller at 8:49 AM on September 3, 2009


I think the point is that her aide had to do it since it became clear that no one who was actually sitting at the table where the empty chair was would do it.

And I'm saying BFD.

When you're writing a blog about how rude people are then you start looking for material.

OTOH the next video down about the vitamin store lady was a good example of the premise of the blog.

Also the JW story was funny.
posted by Bonzai at 8:54 AM on September 3, 2009


>Comments are allowed; it's just that they're under the post title, rather than at the bottom of the post.

Ah, thanks. I could never understand that, it's so counter-intuitive.
posted by ChurchHatesTucker at 8:56 AM on September 3, 2009


I enjoyed this, thanks for posting.
posted by applemeat at 8:58 AM on September 3, 2009


When you're writing a blog about how rude people are then you start looking for material.

No, when you're treated like a non-person every day of your fucking life, you are more aware of when people are being assholes than some random guy on the Internet.

What she was capturing wasn't that people were being too slow to show basic politeness to her--they had no intention of showing basic politeness to her EVER, because they were refusing to acknowledge her existence.

And since she can't talk, she couldn't ask them to move the chair. If she hadn't had the aide with her, she would have had to sit there on the sidewalk until someone other than those girls bothered to acknowledge her existence.

I love that you are trying to portray someone in a wheelchair with almost no mobility and no ability to speak as some kind of entitlement bitch. Wait, did I type "love" just then?
posted by Sidhedevil at 9:01 AM on September 3, 2009 [37 favorites]


When you're writing a blog about how rude people are then you start looking for material.

Yeah, I think there's a difference between "Hey these people are rude" and "Gee the fact that I can't rely on people in the larger community to clue into what would make it possible for me to scoot around independently means that I have to rely on aides in order to do basic stuff like move down the sidewalk."

I mean obviously she can and does speak for herself on her blog, but I think the larger point is that she can't say something like "hey would you mind moving that chair, I can't get around it in my wheelchair" which would give people the option to be like "oh hey sorry" [not rude] or "no, get stuffed" [rude]. My guess is that as the blog evolves, it will be less just stories of people being rude and some "how do do things right" stuff along with the "how people do stuff wrong" stuff.

I read the Travelling Wheelchair blog and these guys just basically try to go to public places in their wheelchairs and talk about what happens there. They're not looking for a fight necessarily, but minor things that stand int he way of accessibility can mean basically not being able to go to the library, for them, which is a bigger deal than someone not saying please or thank you.
posted by jessamyn at 9:01 AM on September 3, 2009 [4 favorites]


Give it time. It's a very new blog and she hasn't got a lot of material yet. Obviously her motivation for wanting to blog about these things is a lifetime's accumulation of small experiences reflecting widespread behaviors. Three or four videos are not going to sum it up.

Stuff like this is what makes the internet great. RSSing.
posted by stuck on an island at 9:02 AM on September 3, 2009


Great post! thanks.
posted by anotherpanacea at 9:03 AM on September 3, 2009


Since acting strangely is not specific to one person, I didn’t want to be like ”Ha ha! Look at this person being an idiot!” because we have all probably done stupid things we would hate to see on camera.

What a refreshing outlook to see on the internet.
posted by droob at 9:05 AM on September 3, 2009 [7 favorites]


Given that she types everything out on a letterboard, it's wonderful that she has a blog at all. I can't imagine what it is like to be an intelligent mind trapped inside a body that won't do what you want it to do, but this is some remarkable writing and clear insight into her world and the frustrations she deals with every day.
posted by hippybear at 9:08 AM on September 3, 2009 [1 favorite]


I'm not trying to defend those girls and there's no excuse for the 15 seconds. But in a situation like that, they might be TRYING to be polite, i.e. "oh god don't gawk at this person / treat them as any other adult walking down the street" and in the process of not gawking and continuing with their conversation, they fail to notice that she actually needs a chair moved. And she is unable to get their attention to tell them to move it.
posted by naju at 9:09 AM on September 3, 2009 [9 favorites]


>No, when you're treated like a non-person every day of your fucking life, you are more aware of when people are being assholes than some random guy on the Internet.

More like, you're an exceptional person who is tired of being assumed to be a different kind of exceptional person, when you're one of a very few exceptional people that most of the people that you have to deal with are ever going to meet.

She really needs to dial it back a bit and cut these people some slack. For the most part, they're trying. They just don't have her complete backstory at a glance, for some reason.
posted by ChurchHatesTucker at 9:13 AM on September 3, 2009 [1 favorite]


They just don't have her complete backstory at a glance, for some reason.

No, but they assume that they do, and I think that's the point of the blog. Not to say "People are assholes," but to say, "Please try to remember that I'm more than what you see."
posted by heatherann at 9:19 AM on September 3, 2009 [5 favorites]


When I was 8 years old some friends of my parents visited with their teenaged (?) daughter, who had cerebral palsey. There was no place for her to sleep except with me in my double bed. I was terrified. I didn't know what it meant that she had cerebral palsey, I only knew that she moved strangely and I had a lot of trouble understanding her speech. Long story short, we slept in that bed, like any two girls might sleep in a large bed, without incident. This was in the early 60s, a time when there were simply no disabled people anywhere in mainstream existence. We're talking before curb ramps and automatic doors, let alone wide bathroom stalls or beeping traffic signals. That one brief encounter, I think, allowed me, for my whole life, to let people different from me in; not to "tolerate" or "accept" them, but simply to engage them as part of the landscape, like anyone else.
posted by nax at 9:20 AM on September 3, 2009


She really needs to dial it back a bit and cut these people some slack. For the most part, they're trying. They just don't have her complete backstory at a glance, for some reason.

Yes. Plus, they were 16 year old girls. You don't necessarily have to have a disability to be ignored by 16 year old girls.
posted by Bonzai at 9:20 AM on September 3, 2009 [6 favorites]


they were refusing to acknowledge her existence.

hey, I refuse to acknowledge the existence of lots of abled folk ever day. Some people are jerks to everyone.
posted by nomisxid at 9:20 AM on September 3, 2009


Just an alternate perspective:

I'm also disabled and I also use a power wheelchair. I don't have any speech difficulties so I guess I'm slightly less disabled than Eva.

My impression is that most people who treat me "bizarrely" aren't stupid or assholes. If someone doesn't move something out of my way, it's often because they don't realize it's in my way, they don't see me since I'm not at eye level, or they're actively trying not to pay attention to me because their mothers taught them that it's impolite to stare. And even if they just don't want to help (doubt it), that's their right. Strangers help me all day every day. If one person every 15 years declines, I still feel pretty okay about humanity (well, at least in this regard :)).

I also disagree that they should know better. I've lived in the Bay Area my whole life and I hardly ever encounter other severely disabled people "in the wild" (other than in Berkeley). Despite my personal experience, and having several disabled friends and acquaintances, I cannot necessarily distinguish from sight a C-5 quadriplegic from a C-7 quadriplegic, or someone with spinal muscular atrophy from someone with cerebral palsy. Most people, I'd assume, don't even know what any of that means, let alone what limitations might result. Two people with the same disability won't necessarily have the same limitations, either.

I mean this mostly as another perspective, and only kind of as criticism. But if I were Eva's friend, I'd advise her to cut strangers some slack (especially that barista).
posted by Kevin1911 at 9:21 AM on September 3, 2009 [30 favorites]


Absolutely wonderful blog. I'll be watching this one, and sharing it with my coworkers.

This gels pretty well with my experience as an aide. When I take a client out (and thus far, the minimum age of my clients has been 35) people treat them like eight-year-old boys if they acknowledge them at all.
posted by EatTheWeak at 9:32 AM on September 3, 2009


Reminds me a bit of the film 'Shooting Beauty' in which a group of disabled folks were given cameras - there is one astonishing section of the pic where a guy does the simple act of mounting a video camera on his wheelchair and captures the reaction of passers-by. brilliant.
posted by jettloe at 9:34 AM on September 3, 2009


I'm not a 16-year-old girl, but I can totally see myself sitting outside drinking coffee with friends and just not noticing that someone in a wheelchair is trying to get by. Not because I refuse to acknowledge that they are a person or any shit like that, but because I'm not a fan of people watching so I don't make a note of every single person who passes by me when I'm sitting at a table in public.

I'm not a barista, but I can totally see myself saying almost the exact same thing the barista did to her. If you look like a 10-year-old boy and I ask you how you're doing and give you a compliment in a sing-songy voice, that doesn't seem so bad to me.
posted by 23skidoo at 9:43 AM on September 3, 2009


I think she missed something — if the Jehovah's Witnesses come to bother you and interrupt you at the most inconvenient times, welcome to society!

Bluntly put, if a barista sees someone who looks looks like a ten year old in a wheelchair, what to do? Do you talk to what looks like a ten year old as a ten year old, or do you talk to them like an adult? Neither works consistently and infallibly, which means that, inevitably, someone will Take Offense. And, since the blogger is uncomfortable with people addressing her aide first, that seems to be out, too. The only thing that is coming up for me is a flag on the chair which says, "I'm a 26 year old woman; I can think just fine, but I can't talk."
posted by adipocere at 9:44 AM on September 3, 2009 [2 favorites]


When I taught school every time I'd start a new class I'd get an IEP, it's an Individual Education Plan for each kid. I'd scan my rolls, find out who the kids were, what their disabilities were and then, tailor the lesson plan to the kid. Kind of a deal when you've got 5 kids with an IEP per class, but not undoable.

Most teachers never bothered. One of my kids was transferred to another teacher and I stopped by to discuss some things with her after school and I mentioned that the student was mentally handicapped. Not hugely, but with an IQ of about 85. Very high functioning. The other teacher said, "really? I never noticed." I'm sorry, but 85 is noticable.

I was also in a training class and one of the teachers was deaf. No one would pair up with her, or speak to her or even try to communicate. I became her 'translator' for the entire class.

Honestly, WTF?
posted by Ruthless Bunny at 9:45 AM on September 3, 2009 [1 favorite]


I've been glared at for assuming someone with a disability wanted a little help when in fact they didn't. So there's that, too.
posted by Aquaman at 9:48 AM on September 3, 2009 [2 favorites]


There was a girl with cerebral palsy in one of my college classes.
I spoke with her often, about class and other things. I thought she liked that because she was mostly invisible to most others on campus.
One day she asked me out on a date. I was taken aback by here forwardness, but I said sure.

The afternoon of the date, she apologized and said we could not go out. She told me that she was just using me to make her boyfriend jealous!
posted by Drasher at 9:49 AM on September 3, 2009 [22 favorites]


Yeah, I think that she can be just as clueless about other people's experience reinforces that disabled folks are people, too!
posted by Mental Wimp at 9:55 AM on September 3, 2009 [1 favorite]


Same here, Aquaman. I'm sure this is outside the norm, but I got glared at for opening the door for a disabled person. It's an act I would perform without a second thought for someone carrying groceries or pushing a baby stroller. It's out of basic kindness, not condescension. Honest!
posted by naju at 10:00 AM on September 3, 2009


Bluntly put, if a barista sees someone who looks looks like a ten year old in a wheelchair, what to do? Do you talk to what looks like a ten year old as a ten year old, or do you talk to them like an adult? Neither works consistently and infallibly, which means that, inevitably, someone will Take Offense.

For me at least, the point is not that these people are acting unreasonably or that they should feel bad or whatever. She uses words like insensitive to describe them but she also included that line about everyone making mistakes and it not being about shaming people.

The point in my opinion is that most people do not know what it's like to be physically disabled to the point that you can't walk on your own, can't talk to people, etc. If you are a 26 year old female who looks like a 10 year old boy, yes people are going to mistake you for a 10 year old boy and that's not their fault, but most 26 year old women could barely comprehend what it would be like to get those kinds of reactions every day all the time. With the blog and videos you can at least see things from her perspective, and get an idea of what kinds of weird stuff she has to deal with that you wouldn't really know about if you weren't in her position.
posted by burnmp3s at 10:02 AM on September 3, 2009 [6 favorites]


Awesome. Thanks to the Internet, a person who normally doesn't have a "voice" in society has one.
posted by soupy at 10:11 AM on September 3, 2009 [2 favorites]


My wife works with adults with disabilities as an aide, and gets a lot of clueless but well-meaning compliments along the lines of 'You're such a good person for doing this!' and witnesses a lot of insensitivity (People talking about the client without even acknowledging the client, etc.), so she'll really like this.

Nice post, thanks!
posted by Alvy Ampersand at 10:26 AM on September 3, 2009 [1 favorite]


Bluntly put, if a barista sees someone who looks looks like a ten year old in a wheelchair, what to do? Do you talk to what looks like a ten year old as a ten year old, or do you talk to them like an adult? Neither works consistently and infallibly, which means that, inevitably, someone will Take Offense.

I don't know a single ten year old boy who would be offended by being treated more like an adult. You're always safer with a default response of treating others with respect, not condescension.
posted by amarie at 10:27 AM on September 3, 2009 [12 favorites]


I think I'd like to print the web address on little cards and slip them under the wipers of the tradesmen's trucks that routinely block the sidewalks in my neighbourhood...

But I fear the only reaction they'd have is LOLRETARDS.
posted by klanawa at 10:27 AM on September 3, 2009


Here we have illustrated, in both the blog and the post comments, the modern dilemma wrought by demands for 'equal treatment'. Equal treatment means everyone, regardless of their particular 'difference', has won the unique opportunity to enjoy the disrespect, rudeness, hostility or complete disregard generally afforded a 'normal' person by other 'normal' people. The individual who actually cares to maintain the brainspace to consider other humans finds herself thus caught in a high probability lose/lose scenario: 'do I acknowledge this person's difference and offer to help and thus risk their wrath at being treated differently or do I afford them the opportunity to get the same treatment any other stranger would'? I tend to err on the side of taking the risk of being abused for helping, because I generally try to help any person, regardless of how they are 'abled'. Seems to me the only way to play this game. The differently abled, though, should at least have a minimal awareness of that decision point - after all, being people, I'm sure they face the same dilemma in situations in their own life.
posted by spicynuts at 10:30 AM on September 3, 2009 [5 favorites]


Alright, so, maybe someone can explain this to me. She can't speak, and herself says that she looks sort of like a ten year old boy. So people who encounter her once could plausibly be expected to have absolutely no idea how old she is, whether she's a she, or how much of what's going on she is following... right? Clearly she's very intelligent and erudite, but I can't imagine that comes across very well from her silence and lack of muscular control. So what are people supposed to be doing? Should store clerks ask her what she wants? She (am I wrong in this?) can't answer them. She's got one video up there of a guy at the store waving at her. It looked like a friendly wave to me, from someone who wants to acknowledge her being there but has no frigging idea what level of interaction is appropriate. The barista thought she was a guy? Yeah, I guess it's embarassing, but really. Tha's more conversation than I've ever gotten from a Starbuck's employee.

I'm not the slightest bit disabled, and I could put together a rudeness reel like this in about a week. It seems like she's ascribing to her disability what is better explained by a combination of people simply being generally rude and/or indifferent to other people, with a smattering of people not having any idea what might be going on inside her head. "Treat people like adults unless you're sure otherwise" is a good lesson. Really, you can rarely go wrong interacting with kids like you would with other adults, in my experience.

If ever there was a person who needed some kind of Stephen Hawking robot-voice thingy, it is Eva though. It must be frustrating to be that bright and articulate, but silenced by your body.
posted by rusty at 10:33 AM on September 3, 2009 [3 favorites]


>I'm not the slightest bit disabled, and I could put together a rudeness reel like this in about a week.

True that. I could even star.

On a semi-related topic, my GF and I have this conversation all the damn time. If I don't get served promptly, the service sucks. If she doesn't get served promptly, it's because she's black.
posted by ChurchHatesTucker at 10:40 AM on September 3, 2009


I also disagree that they should know better. I've lived in the Bay Area my whole life and I hardly ever encounter other severely disabled people "in the wild" (other than in Berkeley).

I'm reminded of an anecdote from the book Karen. Marie Killilea, whose six-year-old daughter Karen had CP, was in New York to have lunch with Frances Giden, an attorney with CP. Giden could walk, but her gait was noticeably unsteady. She made occasional, exaggerated motions and her speech was difficult to understand. When the pair arrived at the restaurant, Marie noticed the tuxedoed host (this was 1946) watching them walk towards his stand. It was obvious that he thought Frances was drunk, and when then asked for a table for two he crossed his arms and said they were "full." Marie looked pointedly at the dozens of empty tables and he repeated "We're full." She was gathering for an explosion, but Frances gripped her elbow and whispered "Let's leave." Once outside Frances told Marie "You have no right to be angry. He doesn't know anything about cerebral palsy." She paused and then added, "Six years ago, you didn't know about CP."
posted by Oriole Adams at 10:41 AM on September 3, 2009 [3 favorites]


I noticed that the headline font seems to be APHont, a font that was specifically designed for the low-vision population.
posted by Melismata at 10:54 AM on September 3, 2009


I think she missed something — if the Jehovah's Witnesses come to bother you and interrupt you at the most inconvenient times, welcome to society!

Yeah, but they usually don't pat my head and crowd around my bathroom stall.
posted by Solon and Thanks at 11:06 AM on September 3, 2009 [1 favorite]


Alright, so, maybe someone can explain this to me. She can't speak, and herself says that she looks sort of like a ten year old boy. So people who encounter her once could plausibly be expected to have absolutely no idea how old she is, whether she's a she, or how much of what's going on she is following... right? Clearly she's very intelligent and erudite, but I can't imagine that comes across very well from her silence and lack of muscular control. So what are people supposed to be doing? Should store clerks ask her what she wants? She (am I wrong in this?) can't answer them.

Okay, I'll give it a shot. The point of her blog is to give people an idea of what they can do. She has a clear suggestion in the Starbucks post - treat most people in a courteous, adult manner. Don't make assumptions about people with mental or physical disability if you can help it. If you need to, takes cues from people around them.

The store clerk should acknowledge her. Just because someone can't answer doesn't mean you can't interact with them, (that is, at least make eye contact. "That will be 20.95. Here you go!" said to the person = not difficult.) It is good the guy got over whatever nervousness he had and waved, but still.

I think she understands that these people might be feeling awkward or uncomfortable or scared to interact with her, and is trying to educate everyone a little to help them get over those feelings.
posted by Solon and Thanks at 11:12 AM on September 3, 2009 [2 favorites]


Somewhat relatedly: accessibility fail blog on Dreamwidth.

(Extra bonus I found on the way there: accessibility fail so horrifying it made the actual failblog.)
posted by clavicle at 11:17 AM on September 3, 2009


I've been glared at for assuming someone with a disability wanted a little help when in fact they didn't. So there's that, too.

A friend of mine told me there's a world of difference between somebody saying "Can I give you a hand there?" and somebody grabbing the handles on his wheelchair without asking because they assume he needs assistance.
posted by futureisunwritten at 11:18 AM on September 3, 2009


>Just because someone can't answer doesn't mean you can't interact with them...

Um, no, by definition you can't interact with them. At least, not easily.

I think she understands that these people might be feeling awkward or uncomfortable or scared to interact with her, and is trying to educate everyone a little to help them get over those feelings.

Yes, this is what I love about her blog. It's helpful to know that these people are out there, and that not every drooling ten-year-old looking person in a wheelchair is cognitively disabled.

OTOH, she's got to realize that most of the time when you encounter someone who looks like that, that's what they are. (Not as often as most people would think, I will allow.) So to criticize some poor service industry worker on a blog, rather than trying to engage them (as much as possible) in real time is a disservice to them and the community as a whole.

That said, I don't think it's actually going to be fruitful to try to engage them (they have a job to do, and she's just another customer in the end) so her blog is a useful teaching tool. I just wish she'd dial back the snark.

And yes, I recognize the irony of my saying someone should dial back on the snark.
posted by ChurchHatesTucker at 11:27 AM on September 3, 2009


Sure would be interesting if she noticed the MeFi influx and came over here for a visit and some feedback...
posted by five fresh fish at 11:28 AM on September 3, 2009


Sure would be interesting if she noticed the MeFi influx and came over here for a visit and some feedback...

I dropped her an email and said if she wants to come over and say hi, I'd happily send her a free account to do so.
posted by jessamyn at 11:37 AM on September 3, 2009


Um, no, by definition you can't interact with them. At least, not easily.

Well, okay - personally, I'd count eye contact as interacting, but I see what you mean. Maybe a better word to use would be acknowledgment - it seems she was mostly upset she wasn't being acknowledged.

I can understand how some people think she is being too snarky or hard on others, and each individual case doesn't look that bad, but I can easily see how frustrating it would be to have those interactions be your reality 24/7.
posted by Solon and Thanks at 11:37 AM on September 3, 2009


Hi MetaFilter. I'm mostly a lurker here, but this is a topic I know something about. I have cerebral palsy -- specifically, mild right spastic hemiplegia. My speech is intelligible, and I'm ambulatory, but man can I make some weird movements. My younger brother's got CP too -- spastic diplegia -- but his is worse and he got some learning disabilities to go along with it. I spent a lot of my childhood in PT and OT and hanging out with other kids who had varying types of movement disorders.

Eva's been a member of the cerebral_palsy community on LiveJournal for a while, so I've been lurking quietly and seeing what she's doing. And, really, the point is not that just that she has to put up with shit -- everyone has to put up with shit. The point is that with a disability you have to put up with extra shit on top of the same shit everyone else has. And especially with perinatal things like CP, you've had to do this your entire life. This is your life. You wait for the bus in the winter and it turns out no one has cleared the pile of snow next to the bus stop. Everyone else can walk over it, but you can't. You'll fall over. You cannot balance on it. You just have to wait and hope the bus driver pulls up in the nearby cleared driveway instead. Random strangers ask if you've had a stroke, or is your arm broken. Every couple of days you inhale your own saliva and spend ten minutes coughing. Your classmates call you a retard. The guy who lives a few houses down the street stops you on your way home from school, says he watches you walk home and that he finds it inspiring and can he take a picture of you. And this is mild CP.

And it's hard to get information about CP, partially because it affects everyone differently. Did you know that SSRIs can increase spasticity in people with CP? I didn't, and my prescriber sure didn't, and now I've got Achilles tendonitis just from walking when the muscles were too tight. Whoops. It will take months longer to heal than it would take any able-bodied person, because my muscles are alternately too weak and too tight in the wrong places. I'm probably going to end up with an AFO (ankle-foot orthosis, a leg-brace type of thing) in a couple weeks, and man, am I not looking forward to that. Not just because of the stares, or the pain from adjusting to it. Having gone shoe-shopping with my AFO-wearing brother, do you know how hard it is to find supportive shoes that will fit an AFO? (This was really, really hard before the internet.) Plus I cannot tie shoelaces, so they'd have to be non-lacing. Just an example of the sort of stuff people with CP have to deal with.

And, yes, yes, a lot of people have trouble finding shoes they like. Just like there are jerks everywhere. But I think it's hard for people to imagine how much more complicated life with a disability can be, and so I for one am glad the blog is showing it.
posted by sineala at 11:48 AM on September 3, 2009 [33 favorites]


I don't know a single ten year old boy who would be offended by being treated more like an adult. You're always safer with a default response of treating others with respect, not condescension.

Great. Now I'm wondering if that tyke I spoke to at the mall yesterday, who was holding a plastic dinosaur, was actually a midget paleontology professor, whom I offended dreadfully.

No, wait, that's silly. If I genuinely think someone is a child, I'll treat them like a child. Very, very occasionally, I'll have mistaken an adult for a child, and that will be unpleasant for that adult, but it doesn't make me a horrible person. It's not unreasonable, when you see a very small person, to assume that person is a child.

If the drugstore clerk and the coffeeshop cashier actually thought Eva was a young boy, their interactions were perfectly appropriate and kind. It sucks for Eva that she looks like something she is not, and, yes, it would be great if people knew more about disabilities, especially common ones like CP. But people don't know lots of shit they should know. There are too many straight up assholes in this world to waste time chastising the nice-but-clueless.

I was once the kind of disabled person who bristled at every well-meaning instance of condescension. I gave myself a lot of pain ruminating on small incidents like the ones Eva records and writes about. I don't do that now, and I'm much happier for it.

Also, if I wanted to be taken for a girl, I might do something practical towards that end, like wear a barrette or a hairband or a girly blouse, rather than filming people calling me 'mister' and putting it on a blog.
posted by eatyourcellphone at 11:49 AM on September 3, 2009 [4 favorites]


I am deaf blind, I do have some usable hearing and vision. In no way could I expect that everyone I meet on the street can understand my disability and what I need. I don't expect people to be perfect and if they make a good faith effort to treat me as a person and accommodate my needs as best they know how, then all is cool. Usually this means that they make efforts to communicate with me in some manner and listen to what I say and treat me with respect. Even if what they actually do isn't exactly what I need or don't need, even if they fumble around a bit and feel awkward, if the open mindedness and respect is there, its all good. It is not that hard to treat someone like an individual person, I would think.

But when people are condescending, or act like I make them so uncomfortable that they can't wait to get out of my presence, that this is MY fault and it is MY job to educate them and make them feel comfortable, that I should be just like whatever deaf/blind/disabled person their mother's sister's dog's girlfriend knew back in elementary school, etc. Then yes, they are being rude and insensitive. Unfortunately, this happens all the time, every single time I set foot outside my home.

If someone can't talk, the thing not to do is just get all flustered and be like, well...she can't talk, what does she expect from ME? I'm exempt from having to treat her like a person. The thing to do is to try to communicate with her. Yes/No questions might work, for example. Or talking to HER yet getting information from an aid. I get that this might take some patience and some practice to get over the awkwardness of it, but I don't see why it is that hard to figure out.
posted by Bueller at 11:49 AM on September 3, 2009 [1 favorite]


>Well, okay - personally, I'd count eye contact as interacting

Yeah, I would too, but then I've had experience with MR/DD people (not that she's either) which most people have not. It's a different sort of interaction than most people are used to having at all, never mind with total strangers.

I can understand how some people think she is being too snarky or hard on others, and each individual case doesn't look that bad, but I can easily see how frustrating it would be to have those interactions be your reality 24/7.

I feel her pain as well, but she's just got to realize that she is an outlier, and most people are going to have no idea how to deal with her. "Do I speak to her, or to her aide? Do I help her, or is that condescending? Do I look at her, or is that staring?" And you get zero prep time to think about these things. As I said, I've had experience in similar situations, and I guarantee that she could make a "look at this jerk" vid about me.
posted by ChurchHatesTucker at 11:49 AM on September 3, 2009 [1 favorite]


As someone who was recently in a wheelchair for 3 months, I have a completely new respect for those who need to use them permanently. Despite the ADA or whatever, no one really considers wheelchair users when designing public spaces, and no one really understands you just can't "squeeze through." People who more severe illnesses like CP have even more layers of difficulty to manage.

However ...

Now our lovely barista asked me in a very condescending tone...

The woman is obviously confused about her gender, but I didn't find it offensive. Same with the drugstore. When you require an able-bodied personal assistant, it's not unreasonable to think service employees would deal with him/her.

I think that Eva is taking at least some of the personal frustration she feels about her illness and projecting it onto strangers.

I mean, you have to allow for some deviance in how people treat you b/c, face it, you don't look the same as most people. Is that fair? Of course not.

Or, exactly what eatyourcellphone said. I know very little about her situation or life, but I don't think this is a positive endeavor for Eva.

Thanks for sharing, sineala. I'm not sure I agree about the blog, though. It might be good for some people (the sort who wouldn't read such a blog), but I doubt it's that "good" for Eva (unless she's just using it to blow off steam and doesn't become obsessed with chronicling her mistreatments).
posted by mrgrimm at 12:21 PM on September 3, 2009


That young lady has the prettiest smile I've seen in ages.

Mercy!
posted by chronkite at 12:24 PM on September 3, 2009


Damn, that is awesome.
posted by killdevil at 12:25 PM on September 3, 2009


The trouble is, we only get to live life as one person. So when something bad happens to us (rudeness, discrimination, abuse etc.), how do we know it is because of characteristic X? A black person cannot re-run the same situation again except this time as a white, to test if it was his being black that caused the problem. Same for a disabled person - or more generally, really anybody. Sometimes it is clear, but often it is not. It takes a lot not to develop unfair ideas or a chip on your shoulder. Most often, you just have to accept that you'll never know the real reason for whatever happens.

So, to me, her blog is really in equal measure about people's reactions, and about her interpretation of those reactions. Sometimes she's right, and sometimes reasonable people may differ.
posted by VikingSword at 12:26 PM on September 3, 2009 [1 favorite]


What a brilliant idea, executed perfectly. The tone of the posts is just spot on.
posted by fire&wings at 12:33 PM on September 3, 2009


The only thing that is coming up for me is a flag on the chair which says, "I'm a 26 year old woman; I can think just fine, but I can't talk."
posted by adipocere at 9:44 AM on September 3 [1 favorite +] [!]


I had a housemate (big co-op house) with fairly profound cerebral palsy - he needed aides, power wheelchair, etc. He actually had a t-shirt that said "I SPEAK ENGLISH". Seemed to help.

I moved into that house when I was 16, lived with him for a year, and frankly, was totally appalled at the way people behaved towards him. If I wasn't trying to get some work done, I'd write up some of the more bizarre stories ...

what a crash course in "disabled people are people too" for a teenager - he was a drunk, lecherous guy who would try to run my dog over with his wheelchair. we'd get drunk and have wheelchair fights in the road, until the cops came.

the infantilization of the physically disabled I find interesting (and awful). we'd go to the bar, and people would flip out watching me set him up with a beer. People working the door would routinely try to reject letting him in ("he's not supposed to drink", "we don't let in people like him", "i don't want to deal with that shit, he can't come in here"), the way that people would talk down to him or just not talk to him at all. there's this interesting conflation of physical disability with mental disability, especially when speech becomes affected. A friend of mine has a muscular dystrophy, and works as a tutor at the local community college. Students routinely reject this person as a tutor - why? They're in a wheelchair, they can't know what they're talking about.

Something else I think would be interesting to address is the relationship of aides and caregivers to the disabled people who need them. The development of these personal relationships, the boundaries of employment/friendship/caretaker roles, the problems (callousness, stealing, inadequate care), the difficulty of finding and paying caregivers, the low importance and recognition of people who do that one-on-one work, the emotional toll of relying on someone for such basic needs ... I think that could be a fantastic post/essay/book. if anyone has any interesting articles/posts about it, I'd love to read it.
posted by circle_b at 12:33 PM on September 3, 2009 [7 favorites]


Hmm…Maybe the UP side of this is that she’s seen as a whiny bitch…y’know, just like everybody else.
“The point of her blog is to give people an idea of what they can do.”
I think this point is absolutely crucial. It is essential that people with disabilities not be included in our social spectrum/consciousness.
Even as I respect the need not to stare, I’m uncomfortable with the lack of engagement in society currently for folks with disabilities.
I grew up with a person living down the street who had cerebral palsy and I interacted with her almost every day. Nice lady. And she was active in the community and contacted other folks with disabilities. So from a young age I’d had at least some contact with disabled folks.

So one day, few years back, I happened to be at a Little City Foundation thing (I had done some charity stuff, happened to drop by, I’m pretty busy otherwise), and I’m chatting with some of the people doing the painting and crafts and whatnot and I’m on my way out and one of the women there said “Wow, you jumped right in.”
And I’m saying “What?”

And she said most people who encounter folks with developmental disabilities, etc. tend to be standoffish, but I ‘worked the room’ like it was any other kind of social situation and apparently charmed some folks. Never had occurred to me that I acted any differently than anyone else. I always attributed such behavior to the usual assholery we encounter every day.

I just thought to myself – “What a gift.” I mean, what a gift it was given to me that I grew up with the lady down the street with CP who opened up this world to me where I didn’t have the same prejudices or reticence to speak to people with developmental (et.al.) disabilities like people. I could have missed all the fun I've had with my cousin who has autism.

I could have missed out on all that interaction with everyday (albeit disabled) people and my life would have been so much poorer and I would have been seen in some folks eyes as less – perhaps the same as other folks who were standoffish and perhaps ‘understandable’ if only because it was common – but less of a (hu)man certainly.

So I think stuff like this is critical – especially if you think she’s being a dick. Because at the very least, she’s being a dick just like anyone else.

IMHO she seems pretty considerate, albeit incisive.
posted by Smedleyman at 1:15 PM on September 3, 2009


("It is essential that people with disabilities not be included in our social spectrum/consciousness." - 'BE' included, obviously. Didn't fully edit there. Stupid machine)
posted by Smedleyman at 1:18 PM on September 3, 2009


> I feel her pain as well, but she's just got to realize that she is an outlier, and most people are going to have no idea how to deal with her.

She realizes that, for chrissake. She's trying to explain to us what life is like for her, and doing it damn well. We all realize what life is like for able-bodied baristas; explaining that is not her job.

Great post, thanks.
posted by languagehat at 2:21 PM on September 3, 2009 [2 favorites]


Thanks for posting this. It's a great read.

The 19th Floor is another good blog written by someone living with a disability. Mark is a lawyer, goes about his day with the help of an aide, and I think he's also a MeFite, but I forgot his username.

It's more of a personal blog than a single-topic-focused blog, but he does occasionally discuss being treated as a non-person.
posted by ignignokt at 2:58 PM on September 3, 2009 [1 favorite]


Reminds me a bit of the film 'Shooting Beauty' in which a group of disabled folks were given cameras -
posted by jettloe at 11:34 AM on September 3


Thanx for the link -- looks like a cool flick.

I nosed over to Netflix to see if I could find it -- nada. Found Sleeping Beauty, American Beauty, Stealing Beauty, Dangerous Beauty -- yep, no problem. But no Shooting Beauty.

So I looked for contact information, called the number listed, said "Hey, I don't know, maybe this is a new flick or something, but you're not on Netflix and you might want to do what you can to get there" blah blah blah, etc and etc. Mentioned all the above-mentioned movies on Netflix, left a fairly chatty voicemail, hung up.

Took a call from a buddy of mine, missed the call-back -- turns out to be from the guy who made the movie. And it is a brand new movie, he's looking for a distribution, said to tell everyone about the flick, and I will -- I'm starting right here, right now. (though of course jettloe beat me to it.)
posted by dancestoblue at 3:12 PM on September 3, 2009 [2 favorites]


(didn't review above post, not sure how the whole thing turned out italicized, meant to italicize only jettloe's bit)
posted by dancestoblue at 3:14 PM on September 3, 2009


>She realizes that, for chrissake. She's trying to explain to us what life is like for her, and doing it damn well.

I'd agree with the second half of that, and I already said she's doing a good job at it. I'm not sure if I'd agree with the first half, though.

The problem you tend to run into is that someone like her gets a network of parents/friends/caregivers/etc. who treat her as she should be treated. That's all kinds of awesome and should be encouraged. But then she hits the local Starbucks (or whatever) and the barrista has no idea that she's not a mentally handicapped ten-year-old boy.

Yeah, it's awkward, but you have to have enough self-awareness to realize that you look like a ten-year-old mentally handcapped boy, and she's not behaving unreasonably. Laugh at the situation, sure, but don't laugh at her.
posted by ChurchHatesTucker at 3:15 PM on September 3, 2009


> Yeah, it's awkward, but you have to have enough self-awareness to realize that you look like a ten-year-old mentally handcapped boy, and she's not behaving unreasonably. Laugh at the situation, sure, but don't laugh at her.

I'm quite sure she has plenty of self-awareness, so we'll have to agree to disagree. And I'm sure as fuck not going to tell someone in her situation what she can and can't laugh at. I'm just glad she can laugh.
posted by languagehat at 3:33 PM on September 3, 2009 [1 favorite]


I wonder how much of it is her being in a wheelchair and how much of it is her being non-verbal. I do not have difficulty with wheelchair users, but I would honestly be at a bit of a loss initially with someone who couldn't speak with me. I am pretty sure I would deal primarily with the aide because I at least knew what to do there.

Obviously, I am sure I would come up with a better approach if I had a few moments to think about it (like I do now) but I'm not sure I'd do the right thing caught by surprise.
posted by DarlingBri at 3:42 PM on September 3, 2009


I went to the cerebral_palsy livejournal mentioned by sineala, and it is fascinating. Thank you for the link.

With regards to the barista mistaking Eva for a boy, I think the gender confusion isn't the issue as much as the barista's condescending manner. On Eva's livejournal she describes herself thusly:

I identify as a female-born, genderqueer dyke who leans toward the masculine side.

I imagine that being genderqueer is a different experience for anyone who identifies as such. Personally, I don’t care if someone perceives me as a boy or a girl; however, I don’t see a need to “correct” people when they call me “he.” My petite stature and my androgynous style, often cause people to mistake me for a young boy.

I don’t feel that its vital for everyone in my life to know I’m genderqueer. Like my disability, being genderqueer is one of my many characteristics. Gender and disability are a part of my life but not the most important aspect of who I am.


I can understand why she wouldn't mention this on the blog so as to focus on the disability, but I think it definitely adds more nuance to this encounter.
posted by granted at 3:49 PM on September 3, 2009


>And I'm sure as fuck not going to tell someone in her situation what she can and can't laugh at.

I will. Don't laugh at the people who are gamely trying to adjust to your unfortunate situation. It's just as bad as if they laughed at you.

>I do not have difficulty with wheelchair users, but I would honestly be at a bit of a loss initially with someone who couldn't speak with me. I am pretty sure I would deal primarily with the aide because I at least knew what to do there..

No reason to feel at a loss. If she were a francophone and had an english speaking aide, you'd speak to the aide.
posted by ChurchHatesTucker at 3:53 PM on September 3, 2009


ChurchHatesTucker: "No reason to feel at a loss. If she were a francophone and had an english speaking aide, you'd speak to the aide."

But that was more or less my point - I wouldn't. If someone is speaking to you and someone else is translating, you address the speaker and not the translator. It's the fact that someone isn't speaking but someone else is speaking for them or on their behalf that would flummox me until I worked out what to do.
posted by DarlingBri at 4:01 PM on September 3, 2009 [1 favorite]


People who enjoyed this post should check out the disability blog carnival.
posted by prefpara at 4:06 PM on September 3, 2009


>But that was more or less my point - I wouldn't. If someone is speaking to you and someone else is translating, you address the speaker and not the translator.

Sorry if I misunderstood you. I'd actually address the translator, because I'd want to be sure that any intonation or whatever was properly conveyed.
posted by ChurchHatesTucker at 4:09 PM on September 3, 2009


I think Mark is wintermute on here, something like that.

I do not have difficulty with wheelchair users, but I would honestly be at a bit of a loss initially with someone who couldn't speak with me. I am pretty sure I would deal primarily with the aide because I at least knew what to do there.

I had a dad who was handicapped and couldn't speak for about nine years and I still didn't know how to deal with someone who couldn't speak to me by the end of it.
posted by jenfullmoon at 4:56 PM on September 3, 2009 [1 favorite]


"On a semi-related topic, my GF and I have this conversation all the damn time. If I don't get served promptly, the service sucks. If she doesn't get served promptly, it's because she's black."

Racism is a subset of sucky service, but it's a particularly galling one. I mean, if a waiter wiped your corn cob under his balls to butter it, that'd be sucky service too, but I think you'd be pretty likely to mention just what made it so egregious.
posted by klangklangston at 6:02 PM on September 3, 2009


I do like this blog, especially the tone and sense of humor.

I'm also someone who is prone to stuff like not thinking about a chair that needs to be moved, but the response that the world is rude and dumb seems like, I dunno, sure, but shouldn't I try to make it a little less rude and dumb?

(Please do not trawl my commenting history for the many places I have acted rude and dumb; you will find too many.)
posted by klangklangston at 6:06 PM on September 3, 2009


I've got CP as well, and I think Eva's blog is serving a valuable purpose regardless of your opinion of her snark: getting people to talk and think about disability in a context where the disabled are active participants. As a (highly) verbal, wheelchair-using disabled person, I've negotiated a very different set of challenges, but I have noticed that substantial proportions of the people I've come across simply don't give disability much thought.

I never really identified as disabled first and foremost, because my education was strictly mainstream, so I've had an easier time than some other people in feeling at home in a world that isn't convenient for me. Even so, I've felt how difficult it was, especially when I've been pressed into service as a sort of disability interlocutor. I think it's really important to diffuse blogs like these, and I for one would be happy to talk about my experiences to any interested mefites.
posted by StrikeTheViol at 6:14 PM on September 3, 2009 [1 favorite]


Great blog and I hope she keeps posting new material. And not just videos, but her thoughts and reflections on life with a disability.

The interactions depicted in her videos are pretty typical features of the landscape for anyone with a significant physical disability. I usually attribute this to general cluelessness rather than stupidity or ill intent. Most people don't have the personal experience or imagination to envision that the mind inhabiting Eva's body is aware, intelligent, and has a sense of humor.

People with disabilities who are nonverbal have to work even harder to punch through people's prejudices. As a species, we are hardwired for verbal communication and cues. Most people are completely confounded when they encounter someone who can't speak and automatically assume that person has no capacity to communicate.

As someone with a disability, I can get incredibly frustrated with such density. But I also find that a little patience and humor can take people aback and cause them to reconsider their perceptions of me.
posted by wintermute2_0 at 6:18 PM on September 3, 2009 [1 favorite]


With regards to the barista mistaking Eva for a boy, I think the gender confusion isn't the issue as much as the barista's condescending manner.

But wrongly guessing someone's sex is an honest error, whether that person is genderqueer (and cool with the mistake) or gender-conventional (and horrified to be taken for something they're not). Wrongly estimating someone's age is also an honest error. If the barista thought Eva was a boy, she was mistaken about Eva's age and sex. That Eva is cool with one mistake and not with the other tells us interesting things about Eva's worldview, but it doesn't magically make one mistake okay and the other not. If the barista honestly thought she was dealing with a young boy, her manner was not only appropriate but kind and friendly.

Perhaps if the barista had plenty of time to observe the interaction between Eva and her aide, she might have realized Eva was not who she at first appeared to be. But when you're working behind a counter, you can't stop and take anthropological notes. You quickly assess who the person before you is, and deal with them accordingly. Obviously mistakes get made.
posted by eatyourcellphone at 6:39 PM on September 3, 2009


One thing that I found particularly interesting was her laugh. I've heard that laugh before from people in wheelchairs, and I always chalked it up to, um, you know -- their mental state. It never occured to me that they might be just as sharp as me, and laughing at a ridiculous situation (such as being treated as a child).

As far as I how I treat people: as a kid I always really treasured it when grownups spoke with me as if I were a grownup. If they're a really young kid, I'll talk to them like they're a kid, but if they're 8 or older, I'll talk to them as if they were a grownup -- not expecting them to understand huge words or something, but simply that they can understand normal speech instead of some weird singsong voice.
posted by Deathalicious at 8:05 PM on September 3, 2009


"Racism is a subset of sucky service, but it's a particularly galling one. I mean, if a waiter wiped your corn cob under his balls to butter it, that'd be sucky service too, but I think you'd be pretty likely to mention just what made it so egregious."

Wait. WTF?
posted by ChurchHatesTucker at 8:47 PM on September 3, 2009 [1 favorite]


Several years ago I had foot surgery. When I'd recovered enough to take the bus, I really needed to sit near the front. (Can't stay upright on a moving bus with crutches!) Fortunately the seats in the front had a sign that said something like "Please give up your seat if requested..."

One day all of the forward seats were taken. I made a polite general request for a seat in the area marked for people with mobility problems. Dead silence! And no one looked me in the eye! Again I mentioned recent surgery, not mobile, certain amount of pain, and this time I cited the sign that says give up your seat if asked, I would really appreciate it. Finally one young guy cheerlessly got up and gave me his seat.

I'd seen people offer seats to others, and I'd done the same, but I realized that I never noticed when a seat isn't offered or given up. Nobody moves, nothing to see. I spent the rest of the trip meditating on how fortunate I was to not have to berate my fellow riders to do the right thing every day of my life.
posted by robotico at 9:28 PM on September 3, 2009 [3 favorites]


MMmmm. Butterballs.
posted by five fresh fish at 11:06 PM on September 3, 2009


This is cool, thanks for linking it.
posted by LobsterMitten at 11:59 PM on September 3, 2009


YOU GO GIRL
posted by wheelieman at 5:16 AM on September 4, 2009


"Wait. WTF?"

Not just sucky service, also racist : Not just sucky service, also disgusting.
posted by klangklangston at 7:58 AM on September 4, 2009


One thing I've noticed in my occasional interaction with people who can't speak to me (a friend's child with down syndrome, for instance) is that I sort of forget that I can speak to them. I totally understand the urge to communicate with exaggerated smiles and waves because talking feels ridiculous and even potentially frustrating to the person who can't speak (how are they supposed to respond to my questions? can they even hear me?). I would also add that, when the person in question appears to be a child and I have no inside information to let me know otherwise, it is especially tempting to avoid verbal communication because I would much rather get a cue from a disabled child's adult caretaker/parent than assume I know the appropriate way to try to communicate.

Would it be more undignified to wear a shirt, button, or sign that said, essentially, "I can't speak, but I can hear and understand just fine... and I'm 26 years old" than to endure the patronizing smiling and waving of people like the drug store man? I'm not suggesting this woman should do anything the way I think I would, but it seems to me that she is hoping people will encounter her and react politely to a disabled 26-year-old despite "seeing" a person who appears to be a severely disabled 10-year-old boy, who can't speak and is accompanied by an aide.
posted by Meg_Murry at 11:46 AM on September 4, 2009


I don't mean, by the above, that the only reasonable response to someone who can't speak, whether for physical or cognitive reasons, is to remain silent and simply wave. I'm sure in many cases, as with this woman, it is appropriate and polite to address the person directly. However, I'm just not sure how to know when that's the case, and when the person before me is actually a child (I generally speak with a parent first before talking to their kid) or is actually cognitively impaired (in which case it might be necessary to deal directly with the person's aide).
posted by Meg_Murry at 11:50 AM on September 4, 2009


Usually I greet everyone when I'm talking to a group and see who starts talking back first. Seems to work. I know a lot of kids and they usually like being acknowledged.
posted by kathrineg at 4:25 PM on September 4, 2009 [1 favorite]


This is another good blog with anime thrown into a mix of topics that shares considerable ground with Eva's. I learned there that Canadian feminist heroine Nellie Mcclung was a proponent of eugenics, an idea which does not find a lot of support amongst people with disabilities.
posted by not_that_epiphanius at 5:03 PM on September 4, 2009


Alvy Ampersand: "My wife works with adults with disabilities as an aide, and gets a lot of clueless but well-meaning compliments along the lines of 'You're such a good person for doing this!' "

A friend who works as an aide for adults with autism often gets the same "It's so noble of you to do this" comments. Her reply is usually "To do what, work for money?"
posted by The corpse in the library at 12:16 PM on September 5, 2009 [3 favorites]


It's wierdly fascinating to see this blog on metafilter, and to see the reactions.

Like many others here (surprisingly!), I, too, have cerebral palsy. Some mentioned the cerebral_palsy livejournal community that Eva is a member of. I created (and am still the maintainer of) that community, and when Eva first created the blog she would often post an entry saying that her blog had been updated. I'll admit that at first it minorly frustrated me. It seemed like shameless self promotion, But kudos to her -- seeing it here on Mefi makes me realize she's hitting her goal. Awareness.
posted by aclevername at 3:34 PM on September 6, 2009


nice to see but i agree, strange to see it here.
posted by medici00 at 9:40 AM on September 7, 2009


However, I'm just not sure how to know when that's the case, and when the person before me is[...]actually cognitively impaired (in which case it might be necessary to deal directly with the person's aide).

I don't know, ideally you'd at least initially address whichever one approached you first. If someone's in an electric wheelchair and motors up to you with the aide behind or to the side, the person in the wheelchair's definitely the one to address, just like you would with any other pair of people. If the aide then needs to step in to facilitate or take over the talking, s/he'll do that.
posted by nobody at 11:02 PM on September 7, 2009


If someone's in an electric wheelchair and motors up to you with the aide behind or to the side, the person in the wheelchair's definitely the one to address, just like you would with any other pair of people.

Well, yes and no. I do try to greet everyone who approaches me, but if two people approach me and only one person asks me a question, I don't see the harm in responding directly to the person who asked the question. When Eva's aide says "We're looking for..." she doesn't (if I remember correctly) add a disclaimer to the effect of "I'm going to be talking, but you can address Eva directly."

I suppose the odd thing here is that, generally, if someone comes up to me and says something like "My friend here needs..." and the friend does not appear to be cognitively impaired, I'd probably respond to both people or even directly to the friend ("OK, what kind of... do you need?"). But in the case of an aide doing all of the speaking for a disabled person who appears cognitively impaired, I don't think my confusion or hesitance is entirely unjustified. I've been wondering for the past few days why Eva's aide doesn't just give a quick heads up whenever sales people and others start talking to her rather than to Eva ("Eva's making the decisions here, so direct your advice to her--I'll just be helping her with verbal responses").
posted by Meg_Murry at 6:43 AM on September 8, 2009


If someone's in an electric wheelchair and motors up to you with the aide behind or to the side, the person in the wheelchair's definitely the one to address, just like you would with any other pair of people.

I didn't see that her aide was wearing an "aide" pin or anything, but maybe she was. This would make it clear what the apparently able-bodied person's role is. Otherwise, it may not be clear who's "in charge."
posted by Mental Wimp at 10:36 AM on September 8, 2009


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