So I have a video for you. It's subtle. Lets see if you can figure out what's pissing me off:
http://www.youtube.com/watch?v=e4jVqYWJGwc
I know it seems like nothing, but I was trying to get by on the sidewalk and there was a table full of girls in the way. These girls were 16ish so not children. I just sat there waiting for them to move their extra chair. None of them moved or looked at me. It was like I was invisible. Finally my aide moved the chair after it was obvious that they were not going to be of any use. This annoyance is obviously not huge, but it happens many times a day. It gets old.
Now it seems like people either ignore me entirely or get a little too close for comfort. There is rarely a "normal" encounter. By normal I mean just your standard "Oh, excuse me," or "Hi, how are you?" or even, "Would you like milk in your coffee?" The funnier thing would be if people treated me like everyone else they might realise that I am indeed just like everyone else.
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It's giving that "private video" message...
ReplyDeleteone time i had my mom's consin visit my university on the school festival day and we had so much fun, but then when we were taking off, there was a lady on the wheel chair (one of those high-tech ones) right behind us and me and my mom wondered what to do with the whole bunch of bikes parked and blocking our way forward in the sidewalk. but (i asked my mom afterwards and found out we had been on the same page on this) we decided the tiny gap between the sidewalk (where the bikes were) and the roundabout should be no problem for such a high-tech wheelchair. But before the lady could just make a little turn and get off the pavement, my mom's consin looked behind and gasped, saying "oh! the bikes!" and she was so quick to get everyone--EVERYONE--at the scene, a total of 15 people or so, to help her remove the bikes from the sidewalk, so that the lady on the wheelchair could remain on the sidewalk and pass by the smiling, disgusting looks on their faces. The whole atmosphere told me, if I didn't join the helping cloud, I would look like a cold-blooded ableist who couldn't care less about disabled people. Now I think I should have resisted and asked the lady if she wanted to remain on the sidewalk or just hop the gap. But all I could do was to pretend like I was helping remove the bikes and try not to smile, or even look at the lady. I avoided both accusations--one from the crowd, the other from the lady (or more precisely, myself). This incident has been haunting me. And that is part of the reason why I think your videos are awesome, educational and meaningful. I am very grateful to you and your efforts to make things visible! Thank you!
ReplyDeleteI must be getting old. I couldn't even see the girls: I thought it was an empty table and that the problem was that the management had thoughtlessly blocked the sidewalk.
ReplyDeleteI think I'd have been tempted to just drive right into them (oops, so sorry, my bad) and sloshed their drinks all over them.
SS
Hello Eva,
ReplyDeleteI think this is a great idea!
It would be very interesting to also see people acting the right way towards you, what do you think of it?
I'm sorry, I guess people talking in foreign languages sound rude sometimes - I'm from Germany and my english isn't perfect, so if it sounds rude or weird in some way, that's not what I'm trying to do!
i think the perspective (literally) that you're giving us here is great, I love where you have the camera. It can be frustrating for the viewer, particularly one who isn't used to being in a wheelchair, but that frustration is I think a good experience.
ReplyDeleteyou go girl :) its a very brave thing to do. its also a great idea to educate people this way
ReplyDeletehey,
ReplyDeletewell, i love your idea of showing people's stupid behavior. My friend is also disabled and she told me a lot about how she is still treaten like a 10-year-old child (and she's 24 now!).
In Poland, where i live, disabled people are so much invisible - it's really difficult to see a person on a wheelchair!
I think this is awesome. As as abled person, I'm sorry to say I am guilty of ALL of these things. Generally, I'm an "ignorer" but I'm sure there have even been times, when I didn't get up to move an obstacle for someone. But I generally ignore strangers, so I am genuinely trying to treat a disabled stranger the same as an abled stranger. And in defense of the average abled person, we don't always know what to do. The frequency with which I actually encounter a severely disabled person is very low. And when I do it is unexpected. So in that unexpected moment, I feel a bit trapped. Don't stare, but don't ignore. If I don't help, am I being rude and inconsiderate? If I do help am I being condescending or patronizing? Inevitably, I walk away feeling guilty, like I could have handled that better. The ideal is to treat that person exactly as I would anyone else - but overwhelming visual cues are telling me this person is not like everyone else and so I have to fight against that visual information. And you seem to understand and appreciate the abled person's dilemma - it just doesn't make dealing with them any less frustrating for you. I think the best part about this blog is that you, the person with the disablilty, have a voice and are using it to tell others what you expect and to stop acting like awkward asses. And since even the physically abled are still a bit socially disabled at times, let me just say, thanks. :)
ReplyDeleteI think you might be able to chalk this one up to people trying not to stare; they know staring would be wrong, so they pretend not to notice you altogether.
ReplyDeleteThis blog is fascinating. Not only does it give an insight into a whole range of experiences that I just have never had to deal with, but it is also interesting in that on the Internet, your prose is indistinguishable from anyone else's, whether they can walk and talk or not, which makes it clear how lucid you are. I mean, I understand it intellectually, that cerebral palsy is solely a motor condition, but the juxtaposition of the videos and text shows this in such arrestingly intuitive way.
ReplyDeleteQuick question: Do you always have to use the letterboard if you want to communicate in English? In the intro video (I'm assuming that's you pointing the laser), it seems like you have pretty good fine motor skills at least somewhere, so I’m guessing you could operate a computer if you had the right interface equipment. If I were in your shoes, I'd really want some kind of voice synthesizer on hand all the time, so I could communicate verbally without help.
Also, good call on blurring the faces out. Very classy.
"The funnier thing would be if people treated me like everyone else..."
ReplyDeleteThey did.
It probably just didn't occur to them that you needed more room to pass a stray chair than most people do.
Great blog, BTW.
Hi,
ReplyDeleteI just finished reading/watching your blogpage and want to tell you I think it's great. Working in retail i have had many opportunities to interact with the disabled, mostly with positive outcomes. I think that I do generally interact in a positive, open, adult way but occasionally there have been the odd awkward encounter. I think your blog can really help everyone see that there is no need to treat others as children or inanimate objects or worse. People can feel uncomfortable but your blog can show them that there is no need to. You are a person not unlike them and just want to be treated as an equal. Keep up the good work, I hope that your blog becomes popular, it is a great educational tool. Keep on keeping on.
Thank you for making this blog available. The video aspect is so effective in underscoring your writing.
ReplyDeleteIt's getting some notice in the larger blogosphere, too, which is how I got here. (Linked from somebody who linked from Bitch.)
Forgive me if I'm overstepping, but some of the comments here are also illustrating your point!
I can't keep myself from noticing that many of the commenters are kind of--cluelessly insulting, might be the phrase.
There are commenters making excuses for your bad treatment by others (trying to explain it, in order to deal with their own discomfort, is my best guess.)
And the 'helpful' suggestion about you finding a different way to communicate frosted me.
Probably because my default assumption is that somebody who has been dealing with her own disability, is a disability activist, and blogs about disability issues, has thought through the issues about her own communication systems more than some random commenter.
"If I were in your shoes..." that comment made me want to hit someone.
I'm going to keep following your blog.
"And the ‘helpful’ suggestion about you finding a different way to communicate frosted me.
ReplyDeleteProbably because my default assumption is that somebody who has been dealing with her own disability, is a disability activist, and blogs about disability issues, has thought through the issues about her own communication systems more than some random commenter.
“If I were in your shoes…” that comment made me want to hit someone."
Look, I wrote that comment. Here’s my reasoning behind the phrasing. I’m sure there is plenty of bias in my actual reasoning to pick apart. Crucially: _I'm not interested in making suggestions_. As you say, I'm sure that Eva knows a hell of a lot more than me about the most effective ways of dealing with disability. I think about it, then I go do something else. She is confronted with it all the time. What I am interested in is understanding how and why she has made the particular choices she has. I just can't personally comprehend why someone would choose not to have the capability to talk if it were available. But, perhaps, if I ask someone who has actually made that decision themselves, they might be able to tell me their reasoning. And then maybe I could understand why.
This section:
"Do you always have to use the letterboard if you want to communicate in English? In the intro video (I’m assuming that’s you pointing the laser), it seems like you have pretty good fine motor skills at least somewhere, so I’m guessing you could operate a computer if you had the right interface equipment. If I were in your shoes, I’d really want some kind of voice synthesizer on hand all the time, so I could communicate verbally without help."
boils down to
"You look like you could use a voice synth if you wanted to. Are you able to use a voice synth? Do you? If you can and don't, how come?"
but that is way too easy to be misinterpreted by anyone reading it as
"You are stupid for not using a voice synth."
For obvious reasons, I don’t want people thinking that that is what I am trying to convey. Language is subtle and ambiguous, and if you want your question answered, you can’t let people think you are being a dick. Especially the person you want answers from.
So, I tried to ask my question in a way that seems less presumptuous: I asked if she used the letterboard exclusively, which seems like a pretty reasonable nuts-and-bolts question, then outlined the specific reasons why it seemed to me that she might be in a position in which she could have a synth if she wished, but doesn't (the reasons why I am asking the question in the first place). Then, finally, I implied my question.
That is:
“If I were in your shoes, I’d really want some kind of voice synthesizer on hand all the time, so I could communicate verbally without help.”
basically means
“I can’t imagine not wanting a voice synth. How did you make this decision?”
And, yes, it's true that if I try to imagine, ceteris paribus, that I suddenly lost the ability to form words with my mouth, hell yeah, as long as I could afford it, I'd want all the technology I could get my hands on to get around the limitation. Of course I can’t know what I'd want if I had cerebral palsy, and had had it since I could remember, because those experiences would have made me a different person by now. By asking someone who actually has the condition, though, maybe I can come to understand why someone might come to a conclusion that is currently incomprehensible to me.
I may be a prejudiced jerk, but if I am, I want people to arrive at that conclusion based on what I actually mean, not some leap of inference that causes someone to think I'm trying to make myself out as an authority on something about which I am clearly ignorant.
Earlier this year I bought my husband, who is a full-time wheelchair user, a camouflage t-shirt that says "You can see me". Because despite the fact that he's 6'10" tall (and thus a good 5'8" when seated), and the wheelchair is a monster, people completely ignore him, except to occasionally turn to me and say "Is he gonna be able to do X?"
ReplyDelete@ MA
ReplyDeleteWhen Eva gets time or has the inclination to weigh in on this, her insight's gonna outweigh mine, but I have two thoughts, one philosophical/political and one practical. I am a person with relative privileged status(not currently disabled, white,middle class, heterosexual,) so take that as you will.
Ally behavior--I'm seeing, thank goodness, a growing awareness in discussions about the burdens that well-meaning people with privilege place on folks who are marginalized, even with 'the best of intentions.'
I'm extrapolating from my dialog and observations in forums with and between people of color and white allies.
Two principles:
1 It's a huge burden to expect someone to take on 'representing' an entire class of marginalized people. Even when this is explicitly invited, my thought is that someone who has relative privilege needs to really be mindful of this. If I ask someone 'what it's like' to have a disability, or to be a person of color, I'm asking someone who is already, on a daily basis, taking lots of hits I know nothing about, to take another one.
2 It's increasingly recognized as clueless to presume that you or I, as a person of privilege, know or have some extra-special helpful idea about how someone should or could deal with their experience. Most recently, I've seen a white person lecture someone of color about how they should to react to racism, complete with selected quotes from MLK, Jr.
Second thought:
Voice output systems are nowhere near as simple or easy to use as you think. I'm sorry, they are just not. I'll admit to only professional knowledge here. I've heard from users and their families, but I don't have user experience.
Voice out put devices are not magic. You seem to have some fantasy in your head about this, and it's not based in factual knowledge.
Some, but not all, of the issues in choosing a device: cost, portability, durability. Access--direct selection versus scanning. How open-ended can you make the device? How many messages need to be pre-programmed, and for which situations? How easy is the device to program? Who is going to do the programming?
Speed at which any system allows for spontaneous, open interaction. This is a big one, in my experience. When you are having a voice-to-voice conversation, there is a certain speed that you and I are used to. Any device, from letter boards to the most sophisticated voice-output device, works at a different speed than you or I am used to. Depending on a wide variety of issues, a voice output device can slow things down a whole lot. There are situations I've seen where spelling while someone familiar reads the message, or speaking and having a familiar person repeat the message, are actually the fastest and most 'sociable' modes of interaction.
And finally: Neither you nor I know, from the limited videos available, anything about how Eva communicates in which situations, other than what we've been shown.
I'm going to go back to lurking/watching now.
Eva,
ReplyDeleteGreat Blog! Keep up the work.
Uncle Dan
V.
ReplyDeleteIt is clear that you continue to misinterpret the intended meaning of my post. Regardless of who is at fault for this misunderstanding, rest assured that I was not attempting to be directly helpful to Eva with my question, nor seeking to ask her to represent anyone other than herself. Hell, I wasn't even trying to 'ally' with her. I just wanted some information to satisfy my own personal curiosity, and it seemed to be a reasonable possibility that Eva was in a position to provide exactly the kind of information I was looking for (namely, the reasoning of any particular person who can't talk, is able to use a voice synth to some degree, but does not (note that this is not "what is it like to be in situation X?", but rather "what is it like for you, personally, to be in situation X?")).
Your latter points get at what I was curious about in the first place. However, I know that voice synths are at least as good as the one built into my operating system. If I can point to a position on a 2D coordinate grid, I can make my computer say words. It's even portable. Even if I were to assume that the rudimentary system I already have access to is the best available technology for the job (it certainly isn't), I'd still be interested in the answer to the question. Your your conclusions about 'what I think' about these systems are simply incorrect.
To sum up, none of the points you attack in your post are actually represented in the meaning I intended in my question. So, I am not, of course, going to try to defend against them (I would even agree with you on many of the points were anyone actually supporting the contradiction of them), and am going to pull out of the thread entirely before we both start fighting straw men.
Fantastic blog this is. I know what exactly you mean. I have cerebral palsy. I live in india, where NONE of the public amnesties or systems were built keeping invisible people like me in mind. Tell me all about it. I pay more income tax than most average earning folks do but the way i get treated, sometimes i just wanna get out and go somewhere else and never be back.
ReplyDeleteyour aid is hot
ReplyDeleteI clearly understand your frustration, but this is not just because you are in a wheelchair. Also not just confined to where you live.
ReplyDeleteI stay well out of my town (except for today, eek), because of the tide of ill mannered scum who have no regard for anyone but themselves.
With each new generation, good manners and consideration for others seems to be disappearing completely.
This video makes me think of my last job as an aide to a woman with CP. The filthy looks I got when we went to the gym for the second time and I didn't help my client with the doors!
ReplyDeleteThe client preferred to go out and do things by herself if she could, so we had to find out whether she could open all the gym doors when there was no-one else around. But people would keep leaping to her aid and glaring at me. I couldn't explain to every one of them that there was a reason that I was standing there doing nothing; we couldn't rely on some helpful stranger always being around.
In the end, the only reason she couldn't go by herself was because able-bodied people often used the disabled showers and hung the shower head out of her reach.
Anna said: "Because despite the fact that he's 6'10" tall (and thus a good 5'8" when seated), and the wheelchair is a monster, people completely ignore him"
ReplyDeleteWell personally I am very shy and I tend to "ignore" strangers in general, unless someone speaks to me first or I have no other option but to interact with them.
what drives me crazy is when i am acting just the same as anyone else for years--being productive, happy, expressing myself articulately, etc.--and then i find out i have been friended 'for charity'. what?
ReplyDelete