A real conversation I had today


Setting: At a park I take my dog to, with staff and staff’s roommate. Staff starts off way at the other end of the park. As usual, I may jumble the order of the conversation, but what was said is approximately what was said.

Stranger: Oh… does that thing…

Me: (typing something unrelated to something else)

Stranger: Oh wow, so she types into that thing and it says what she’s typing.

Me: Yep.

Stranger: Is she deaf? Can she hear me?

Me: Yes, she can.

Stranger: How old is she? I’m betting she’s about 30.
Me: (typing while the two of them talk)

Staff’s roommate: I don’t know, I’m guessing around 25.

Stranger: I’m guessing around 30.

Me: 25.

Stranger (finally addressing me): Do… you… like… coming… here?

Me: Yes.

Stranger (again to me, evidenced by the very patronizing tone): Do… you… like… when… the… dogs… are… nice… to… you?

Me: Yes.

Stranger (back to talking to staff’s roommate): Do you take her out places like this often?

Staff’s roommate (inexperienced in these kind of conversations, but still uneasy): I think it’s [staff’s name] who does that usually.

Stranger: Oh, wow, it’s so nice to see what some people will do for each other, it lets you know there’s some caring people in the world. That’s so nice of her to do something like that for those people…

(Long pause.)

Stranger: It’s amazing what technology will let people do these days.

(Long pause.)

Stranger: What’s your disability, anyway?

Me: That’s a personal question.

Stranger: Oh okay… you know we’re born perfect… and we’re lucky to make it to 25 without something wrong with us… because it only gets harder…

Me: (thinking but not saying that I’ve been disabled from birth, gritting teeth, looking for escape route)

Finally I took my dog over to a different section that this guy’s dog couldn’t go in. I learned later that he went up to my staff and started asking her all kinds of personal questions about me, including what my disability was. She asked him if he’d asked me these questions, and he said he had but that I’d said it was a personal question, and she told him that’s probably all the answer he’s going to get then.

Note, this isn’t a matter of being ashamed or not-open about being autistic (in fact if he’d been a bit more observant he’d have seen the “Autistic Liberation Front” stickers on my wheelchair) or any other thing like that. It’s about not wanting to talk to patronizing people who seem to think they’re entitled to various details of my life no matter how they have to get them (and like my opinion is worth nothing in the matter), and definitely not wanting to give them what they’re looking for.

(Will stick categories on this when back to a computer that has full web functionality.)

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

41 responses »

  1. People like that, they wouldn’t have remembered or believed any answer you gave anyway. Even if they saw the stickers, they’d still go home and say “We met a girl, well, she was really 40, and she was in a car accident one time, and now she’s deaf.”

    The song they want to hear is already written and recorded in their heads…they just want you to hum along, I guess.

  2. I have vivid memories of a visitor to a segregated disability programme that I was in about a year ago leaning over me and cooing, ‘You’re such a CLE-ver girl! That’s BRIL-liant!’, in response to my typing on a communication device that I’d just learned to use. At the time, I’d been taught that that kind of thing was a “compliment” and that it was wrong of me to be uncomfortable with it.

    I’ve had a few of the “What’s wrong with you/her?” “conversations” in public, too. Also, someone who stated “she should get an operation” (what this “operation” was supposed to do, I never found out). What amazes me is the outrage that people often respond with when I (or someone else) make it clear to them that I’m not interested in discussing the details of my physiology and neurology with strangers. There’s an enormous, completely unquestioned sense of entitlement there.

    Stuff like the “It’s so nice of her to do something like that” thing makes me wonder if people realise that staff are actually employees, not personal friends or random altruistic people that we grab off the street.

  3. People need to be educated so that they do not make the kinds of social errors the guy in the park made with you. I’m not suggesting you should educate them if you don’t want to, but someone has to or they will never get it.

    A woman I know who was attempting to have a conversation with an ordinary person came to me and said, (pointing to words on her symbol board) “tell her I can hear.” I explained to the woman that all she had to do was speak normally, that she was speaking to an intelligent person who happened to be unable to speak with her voice. The other woman kept trying to use her board, pointing out responses instead of just speaking. If she had taken the time to read the intro on the board she would have known what to do. The other woman meant well I guess, it was just ignorance on her part.

    Whenever I was approached by people who talked to me instead of the non speaking person I would say, ‘he/she has normal intelligence and can hear you perfectly.’ Then I would leave them to it. People assume that those who look difference are unable to understand, speak, feel, anything. They need to be told, constantly.

    It’s a matter of education. Who’s going to do it?

  4. I think you ought to have videotaped that, well Ok you didn’t have a camera, but it might be interesting to get someone to surreptiosly video tape such happenstances for inclusion in a documentary as prrof that this kind of patronising mass delusion still goes on.

    Me I thought coming out of hospital yesterday, that I should have took me video with me, I would love to have a video of the operation (even though I don’t like watching them on TV) and there is a whole episode missing from Terra Incognita, if I am not seen in the hospital. SEcurity is the big problem though, and I guess I would need all manner of ridiculos permissions of the kind usually not granted.

    (Which is why I film on the buses, trains, and stations without)

  5. If “education” were all it took then he would have taken “That’s a personal question” for exactly what it was and not tried to ask again behind my back. It’s at any rate not the job of disabled people to run around “educating” 24/7.  The only “education” I’m willing to give is responding to people like that the exact same way a non-disabled person would if treated that way, I don’t go to the park as a public service to anyone.

  6. I’m blind and mostly-verbal (although I frequently get confused when talking to strangers), and get patronizing and invasive crap like that, too. I really am tempted to make up rude cards to hand out to rude people that say,

    1. Yes, I am legally blind and this is my white cane.
    2. My remaining vision is variable because my ciliary muscles spasm and freeze. Those are the muscles that control the way the lens focuses. There is no explanation for why this happened to me.
    3. No, there are no drugs, excercises, or surgeries that will fix it.
    4. There is no such thing as an eye transplant. Some people get cornea transplants, but there is nothing wrong with my cornea so that will not help me.
    5. I work full-time and am not on any kind of governmental financial assistance.
    6. I have an additional disability that makes it difficult for me to talk to people.
    7. Any other question you come up with is too personal and is rude for you to ask me, so leave me alone.

  7. Oh I dunno I am a living education, when I point out trivial things in the landscape or townscape (don’t get me going on that word) I think I am teaching people how to see there environment.

    My mum always accepted questions because she said how else would people know.

    S’funny though when I took my mum out, I was the one who no-one would speak to

  8. I don’t mind education, but not on the terms of the random strangers I encounter. That’s part of the education they get from me that they are never going to get from cheerful answering of all curiosity, and that’s one reason that I find it annoying that so many disabled people acquiesce to any and all questions.  If some of us don’t hold out for this stuff, then what other people are learning from us is that they have a right to their questions answered.  Although too often what happens is those of us who aren’t in the mood to “educate” become “the bad disabled people” and those who are not become “the good, gracious, helpful disabled people that everyone else ought to emulate”.

  9. i have lately come to think that i have to “educate” (about a variety of things, including autism) because i’m a teacher, and part of my job is (i think) to try to get people to think about stuff they didn’t before, even if it’s off-topic from the course i’m teaching.

    but in general i think people should be allowed to live their life without being pestered, especially if that’s what they express they would prefer.

    i have probably been guilty of asking rude questions of disabled people in the past, being of a curious mind and an irregular ability to know when i’m being offensive. But i will sure think about it more next time: “am I being intrusive?”

    Oh, this may be silly, but … the free businesscard people http://www.vistaprint.com/vp/ns/bcfree.aspx seem to have a free postcard offer also: http://www.vistaprint.com/vp/ns/splash/splash_postcards.aspx … i remember in the previous post about rude questions there were 2 of you (Amanda and one of Amorpha’s people?) who wanted to make “stop pestering me” cards. Well, if you decide to, you could get them printed free, there. i donno about you but i like free stuff.

  10. This post makes me think a lot about “the background, to the foreground.”

    And reminds me of when someone went to visit China and gave Charlie a panda bear puppet, then smiled at me and said “It’s from your native country!”

    (I was born in California.)

  11. This guy was obviously not interested in being educated – you told him everything he needed to know, and even pretty much answered his questions. Funny how wrong an outside observer would probably be when asked who between you two was “off in their own little world.”

  12. This is something to me that depends on the situation. Recently on a parent group they were priding themselves on their duty to “inform” the public about autism by chiding another member who did not choose to kindly inform a lady who was rude to her son. The others were to varying degrees saying that she missed an opportunity to enlighten the woman while I strongly disagreed and said that certain people are not interested in autism and that education may in fact only add to their negative attitudes. A person who behaves quite rudely or innapropriately does not have an autism awareness deficiet.

    That being said – there are certainly times (more often than not) for kindness because people just may not know what to say. I won’t admonish anyone for being ackward because I am ackward with many people in conversation which is why I tend to be very shy and reserved. That is not directed towards any certain group of people however. Which is why I tend to type online much better than I converse in person.

  13. Amanda, I am totally with you on this. Disabled people are not here just for the education of the non-disabled. All I’m saying is that at some point somebody has to do something or the type of situation you encountered is going to keep on happening.

    Personal questions about your life or anyone elses’ are not up for grabs any more than a non disabled person would expect to answer personal questions.

    Getting The Truth Out is a great website but how many people would find their way to it?

    I don’t have any answers. I do know that all kinds of people get asked inappropriate questions including the non disabled.

    As a pagan I stopped wearing my pentagram openly because I got sick of the intrusive questions. Disabilities cannot be put in a drawer nor should they be. Some things are written all over us.

    There will always be assholes out there.

  14. Thank you for bringing this up. I’m neurotypical, use crutches, and get this kind of thing all of the time! Incessant questions about my medical history, people asking my friends or complete strangers about me as if I weren’t there, people offering vague incomprehensible ‘spiritual comfort’ within minutes of meeting me (because having a disablity means I need to be consoled or encouraged in every encounter).

    I had complete strangers shout to me from half a block away as I was walking past “You have MS?” And when I didn’t answer until the third time (because I didn’t realize they were talking to me), they looked at me like I was the rude one, and proceeded to lecture me about multiple scolerosis.

    As for education, my experience is that it’s not worth the trouble on the blatantly rude. I am convinced that the people who go up to me in the street and ask these type of questions see me as less than human. The times I’ve tried to explain, it gets slotted into the existing narratives in their head. “I don’t want to talk about it,” becomes, “I can’t deal with it.” “I don’t find my disability a constant source of unhappiness,” becomes, “I am being brave.” And insisting I be treated like a competent human being gets me categorized as either ‘a brave little soldier’ or ‘ungrateful.’

    I do try to educate people who seem to be listening, with mixed results. Once, in a college class, we got a group assignment about different hypothetical scenarios on discrimination, and were asked to brainstorm on ways to deal with it. Quite by chance, my group got one where a woman who used a wheelchair was complaining of a co-worker who wouldn’t look at her, or speak directly to her, and asked questions like “When will she have it ready?” when she was sitting right there.

    Initally, almost the whole group made two assumptions; that she was imagining the behavior, and that she had some sort of hearing or speech problem that made it ‘too difficult’ for him to speak directly to her. This was not in the secnario, it was a guess.

    So I did a little educating. As someone who’d been accepted by them as intelligent and competent, I explained how I’d been treated that way in the past. I shared an experience of mine waiting in line for and event; one of the event staffers saw me in line, and asked two complete strangers behind me if I needed the wheelchair seating. When they shrugged and said that they had no idea, he turned, looked around, and realizing I was alone, asked me. I said “No,” he gave me the ‘how dare you not be in the special section’ glare, and walked away.

    Hopefully, some of them were educated that the respect do a person, and how they should be treated, has nothing to do with someone else’s idea of how competent they are. They all seemed to get that a physically disabled person can be unfairly treated as incompetent, and this is a form of pedjudice.

    However, when I shared the response of a sympathetic friend, “That guy should be fired from customer service if he treats people like that,” they all got very defensive, and said I should have educated the man on how to be more sensitive. As though it were entirely my job.

    Not entirely sure what I’m getting at, here. Just wanted to share with people who’ve had similar experiences and won’t assume that the people who harrass me are benevolent, and that it’s my duty to be ready to provide on-the-spot sensitivity training anywhere I go.

  15. Yeah, J’s scenarios are often the kind I encounter.

    One of the rudest is one I had to go ahead and stick on the GTTO website.

    I was in the Tech Museum with Joel and one of my staff. We were watching some kind of model roller coaster, you pressed a button and it went around and around and so forth.

    We were talking to each other, and I had a very big, prominent AAC device that day compared to Joel’s (the Liberator, which is huge and weighs a ton and has a lot of pictures on it so it usually draws attention — Joel had a Lightwriter which is small in comparison).

    So this man who’d been standing there watching it with us, came over to me and started asking questions about the device.

    I did the basic “I type, and then it says what I’m typing” thing, and demonstrated.

    He asked, in a fairly skeptical tone, “Can you describe what we just saw then?” (Meaning the model roller coasters.)

    At that point, Joel was trying to mainly hide from this guy so he wouldn’t be subjected to this next, I was too flabbergasted and pissed off to answer the guy, and my staff snapped “YES” at him.

    The guy got over around my face area and said “I guess she can’t,” and then walked off quickly.

    I took that opportunity to educate my staff about the reasons that I’d just amply demonstrated, that a lot of people don’t do well when formally tested — if they find the questions too insulting or demeaning etc.

    But that guy apparently walked off imagining that I was only simulating being able to communicate.

  16. Third person talk is so annoying. I’ve gotten it fairly recently even when I do talk. Some people are just that rude. People think I’m also a bit nutty when I talk to someone who is “mentally retarded” directly. I did however once have this bad habit at one time copying my sisters around another girl that my mom would visit during “visiting teaching” (a church thing). The deal was that I didn’t really know that there was another rule (a double standard rule) that you shouldn’t talk about (normal) people in the third person when they are present. Upon understanding that, I rebelled a bit and broke that habit.

  17. The times I’ve tried to explain, it gets slotted into the existing narratives in their head. “I don’t want to talk about it,” becomes, “I can’t deal with it.” “I don’t find my disability a constant source of unhappiness,” becomes, “I am being brave.”

    This one bugs me. A lot. That is to say, the transformation of someone’s life into this great act of heroism or martyrdom because someone else thinks it must be a horrible way to live, or it must require an unusual amount of courage and determination to be happy and keep going.

    In truth, to me, it’s just my life. I know no other way. I can’t gauge my “strength” or my “heroism” against another person’s, and I think any attempts at linear measures of such things to be futile anyway.

    And people always seem so confused when you don’t want to be treated as a brave hero who “struggles under conditions more horrible than most of us can imagine etc etc,” when you don’t find it complimentary and don’t want to be pedestalized. If you inform them that you don’t find your own life horrible, that it’s different but not necessarily worse, and that the worst moments have come from people trying to make you be other than what you were or acting as though things like you shouldn’t exist in the world, they’ll still keep trying to foist it onto you, and then get extremely offended and move on to someone “grateful” (whom they may then hold up to you as a model of what you should be like).

    There is something leech-like and exploitative about people who do this chronically, as if they consider it their Good Person Badge of Honor to deal out such dubious compliments. I have seen people who go around from community to community, or webpage to webpage, looking for someone whom they consider disabled, mentally ill, suffering, whatever, to shove their pedestalization and “flattery” at.

    For instance, we and Astraea were contacted at one point by someone who first threw all these gooshy comments about our “brilliant webpages” at us, then started in with a routine about how plurals were all so amazing and geniuses and so forth, and professed his desire to “help with the cause” and be the “token singlet.” We tried, repeatedly and explicitly, to explain to him that we were not interested in any kind of “publicity” which presented us as superior beings, but still he came up with all sorts of bullshit theories about our having “increased mental capacity,” etc. After several months of futile wrangling, he found another system who was apparently happy to accept his BS about being “heroic” and “amazing” and the like and sent Astraea a nasty letter, which seemed to amount to attacking them for not believing that multiples were intrinsically mentally superior to singlets, as far as I could discern. He’s still going around pulling the same act on a few forums, attaching himself to people and telling them how special and advanced they are.

  18. It seems there is a whole semiotics of disability, possibly a heirarchy of assumed competence too.

    I have the obvios semiotic of a cane, and although that don’t always get me the best seat on the bus it is interesting to note that a lot of motorists do stop to let me accross the road.

    My tinted specs on the other hand don’t have the same semiotic, especially as to why I might be wearing them when it is dark outside, they appear to be an aberration and therefore more likely to cause awkward questions.

    I recall once in a supermarket cue, that a mum apologised for her little boy staring at me explaining he was autistic, to which I ansered something like, that makes two of us. That seemed to take the pressure of her concern anyway, and she told her boy, look, theres someone else whose special like you, which I suppose on the face of it, might also have been considered rude, though I think actually she was probably relieved to find someone who was not annoyed at her son.

    I think the rudest thing I ever saw with my mums wheelchair, she was in an electric on this occassion, was some guy, mimicing with a book, as if he were using a radio controlled device, who said to his friend, I am controlling that for her as if this was some kind of a joke.

    There really is a complex pyscology going on, not only of ignorance and lack of experience, but of embarrasment and schadenfreude.

  19. Julian: I was once “collected” (or in fact referred to be collected, then collected) by a woman who as far as I know was a lot like Horace Slughorn (the guy in Harry Potter who “collects” people he thinks will be famous or influential and gets them together for his own self-aggrandizement) only instead of famous people she did it to (a) disabled people and (b) indigenous people, both from all over the world, that she thought were “spiritual/psychic/etc” because of being disabled or indigenous. (She also got irritated at people who “exploited” people, but never seemed to see herself as doing so.)

    I eventually said something so alarming to her that she quickly found a reason to get off the phone and never called me back, and I think I’ve convinced her I’m sufficiently unenlightened as to be uninteresting. Of which I’m very glad. This was someone who considered it “very spiritual of her” to have survived in situations that were down to class privilege or the random chance of the way her body is set up (and apparently thinks people who do not survive those situations are less spiritual), and I don’t mind being considered unenlightened or dangerous or anything else like that, by a person who thinks that way.

  20. Laurentius: I’ve noticed that people treat me as in fact much weirder outside my wheelchair, and also much weirder on the basis of a communication device than a wheelchair.

    I used to also get “Why don’t you get up and walk?” hollered at me by people who saw I was using my legs to push my wheelchair, to which I programmed in replies on a communication board to the effect of, “Because obviously I’m so bad of a faker that I didn’t even think using my legs would get me questions like that,” or “Because I enjoy making up smart-ass replies to questions like yours.”

    One time when I did an impromptu rant at someone who said that to me, he gathered all his friends to watch, and one of them said something like, “Holy shit, he’s [sic] cussing you out with a machine!”  To which they all became fascinated and missed the point of anything I was saying.

  21. “How much — and what — I’m willing to say is highly situation-dependent.”

    That makes sense. Depending on how someone brings up my “obsessions”, I may or may not tell them about autistic perseverations and how they can be really quite useful. Or if it’s said in a very strong way, I may be just so shocked that I will just not say anything useful at all.

    I try to be NICE as much as possible, which is mostly out of fear of being thought “not just NOT NORMAL but also NOT NICE”, so maybe I should get over that, at least in some situations, because it makes the “non-compliant” look bad when you are entirely in your rights… It’s an idea I hadn’t properly considered.

  22. I’m one of those “unelightened” ones who is becoming much more aware since reading your blogs. In reading these I kept thinking “but there is some issue missing here”. I think I finally figured it out. I live and work in an atmosphere where to be “nonverbal” is to not have any ability to think or reason. And I have been told as such by other staff and people I come in contact with. I think what irritates people like that to no end is to have all their theories come crashing down. They have lived in a world where they “KNEW” that certain people (those who had been evaluated as such) were unable to think and wasn’t that just too bad. And many of them had fired staff for insisting that people who couldnt speak could indeed learn. Now here they are face to face with someone who has the audacity to prove them wrong. I mean how dare you do this ? Why if people like you all keep persisting in running around town with your devices why some of their clients might see you and think”If she can do it so can I” and then oh horrors maybe even some of their STAFF would see you and start to insist that just maybe the agency should provide devices for their clients to communicate. And then the clients just might start insisting that they be treated like decent human beings who could think. !!! Imagine having to apologize to family and coworkers and admit that “these people” could indeed communicate. So probably their tactic is “If I humiliate this person enough they wont show up in public again and I wont have to worry about this (nonverbal-diagnosed profoundly ……) individual somewhere in my life actually being on my level.
    Sorry I can be a bit longwinded. But that truly is the enviroment that I deal with on a daily basis. So reading your blogs is a breath of fresh air knowing that somewhere out there adults who cant talk ARE allowed to communicate.

  23. I’m ashamed to say that I was once almost that rude to someone in a wheelchair.

    In my defense, I was fourteen, and I’ve learned much better since. Also the person in question was someone I thought I knew fairly well, who simply showed up at school one day in a wheelchair I had never seen before.

    I still get embarrased when I think about how much I pestered him, though.

    It is absolutely not the responsability of any disabled person to educate the ignorant and ill-informed. Many do, and that’s wonderful, but in the end only the person themselves can amend their ignorance.

  24. I hope this at least obliquely relates to this post and all the excellent commentary that came after it. I and another guy called Alexander’s Daddy (You Tube name, Christschool, or something like that) have been embroiled in a discussion over the following video:

    There are approximately 17 comments now beginning with Alexander’s Daddy’s comment about the creator being self-absorbed. After I watched the video, I tried to give SilentStrife the benefit of the doubt. I said that the title was a mistake, but I was thinking, “Okay, maybe s/he is not really making any broad generalizations about all autistic people. Maybe this is just one family’s experience, even if the title is really sensationalistic, or whatever.”

    So I commented about the title and left it at that. SilentStrife said s/he stands by the video because “Autism cages people.” Okay, so then this other person started flaming me, and finally came the part I wanted to bring out here.

    This person was saying essentially that because the subject of the clip cannot “describe” his “feelings” his feelings cannot be taken into account, which means I guess that they don’t exist. Second it seems that it is more important to show this family’s “pain” and being “caged” than it is to protect the privacy of the autistic individual. I tried to point out all the inconsistencies that I have seen thus far, but I don’t think I’m getting the point across.

    It all goes back to the idea that if a person is nonverbal he is (1) not aware of his/her surroundings; (2) doesn’t have feelings; (3) doesn’t have a right to privacy.

  25. I wanted to add something else. I’ve been thinking a lot about certain peoples’ feelings of entitlement to be educated by the disabled about their disabilities. I think I might have an idea where this comes from in *certain people.* Some people might just be idly curious or might want to know certain things just to offset their feelings of being uncomfortable in the presence of disabled people. But other people, the probing type described here, might have another motive. I’ve been interested in the myths surrounding autism, and one is the angel myth (there is also a devil myth). The angel myth says that the *reason* autistic people and others with disabilities are put on this earth is to make ordinary people better people. The disabled, in other words, are sent here on a mission from God to better mankind and/or to send a message of hope and/or to teach people to count their blessings.

    People may or may not be conscious of the “autistic as angel” myth, but on some level they feel they are entitled to know everything about the disability in order to become “enlightened” and to walk away with some kind of moral or message from the experience of having been in the presence of someone like that. If that someone says no, they might instantly be catapulted into the “autistic as devil” myth.

  26. I have to admit. I noticed mention of the wheelchair and became curious as to what reasons you use it….but it’s not my business. I’d assume if you wanted to explain why, you would have done so. I’d also figure that there would certainly be little reason to go to any trouble to use one if one didn’t need one. Certainly, I find them useful and really enjoy balancing on them and would not mind using one if I needed one or not using one if I felt perhaps I would be better off trying to strengthen my legs instead. If its an experiment, I don’t mind either. I don’t know any other autistics with wheelchairs but I know a few with all kinds of other implements including oxygen/tracheotomies….others who use speech devices who can speak if in an emergency etc etc. I certainly would like to be able to choose not to speak if I so desired. I haven’t thought about choosing not to walk if so desired but it’s probably the reason I don’t go very many places as it is. I perhaps enjoy speculating a lot more than commenting on such things but I guess I have done so now. The Horace Slughorn comment is rather insightful and wonderfully brilliant. ;)
    (btw, flattery sometimes will get one a donut hole or a used beverage can if they’re “lucky” … in my home. Well, my mom and sister have been getting a lot of empty cans lately. :P)

  27. I mean to say perhaps “statement” more than “experiment” in the above but it’s either or actually. If it is or it isn’t, I don’t think it would be offensive of me saying it is just a statement because it doesn’t matter who exactly makes it but it may play on assumptions which is not necessarily something that I find a problem. The unusual aspect may be the “FDR effect” or that of not seeing one and then reading about it. But ah well, many may possibly read but not see a possible new diagnosis for myself either. I have to wonder still more about it though and actually check out for it. It’s just that, I’ve mentioned elsewhere before, I find so many things against my “assumptions” before. There are some people who feel in the “wrong body” with their limbs. Some people want amputations to what doctors consider healthy limbs so they can “join” a “group” perhaps…or perhaps there is something so artistically alternative. Those reasons grate on me a bit as just trying to get other people to accept the absurd for no reason other than a cultural birdflipping. Perhaps there is honesty too or they think and philosophize about it so much as well. I don’t know if you know these kinds of people or what you think of them but they have been criticized relentlessly by some here. My thoughts are still respecting of self-determination but I don’t always have to respect motive or the statement or choice. Then again, I have better things to do than worry about it too much. But I just feel a bit skeptical about it as I would anything new. One can over argue from…novelty or be overly cynical. I’m somewhere outside that though more in the rambling about it area. ;)

  28. Some people are awful no matter who they’re with. Because they stand out, disabled people can be a target for their obnoxiousness.

    Some people get by just fine socially as long as they stay within familiar territory, but they’re awful when they are in a situation where they aren’t in control of their social interactions any more – for instance, J’s event staffer. He’s probably not stellar with the general public either, but his marginal ability to deal with people falls apart when confronted with the unfamiliar.

    Lots of people are both quite inflexible and live narrow, constrained lives. They are simply not equipped to process something that seems new and unfamiliar, or to focus on commonalities with people instead of differences.

    Education might help with the second groups of obnoxious people, but it would have to be the sustained, focussed kind. Not the kind of education they can get from people they randomly insult/assault on the street. But maybe the kind they could get from a good customer service training program, where you’re taught to focus on what other people want or need. (One of the most skilled people-persons I know trained as a telephone operator.)

    Education won’t help with the first group of awful people, though. They’re just awful.

    People who are open to new ways of looking at the world, who actually respect and care about other people and their autonomy, are easy to educate. They’re prepared, so a word or two can point them in the right direction. Even if it’s a word like “fuck off.” They’ll think about it, figure out what it was they were doing that was so obnoxious, and not do it again.

    Staff need to know what they can say in these situations too. For instance, “I’m just an employee. If you want to know anything you need to talk to my boss. She might not want to talk to you, though.” No, it won’t make any sense to an ineducable person, but it’s true. Also, “Um, Amanda, do I need to go get a cop to make this stranger stop bothering you?”

    I don’t think it’s that useful to worry about the messages that compliant disabled people give vs the messages of politicised disabled people. If the compliant disabled person is actually comfortable in a particular situation and has judged that an attempt at education is appropriate, then let them. If they are still learning about their own boundaries and how to judge what other people are able to hear, then let them explore. But if they aren’t comfortable and simply don’t realise that they really do have the right not to submit… that’s an issue. It’s an issue for the disabled person, not because it gives the wrong message. The world is a big place. There will always be multiple messages in it.

  29. Lordalfredhenry at other posts Amanda has mentioned that she needs the wheelchair sometimes, and sometimes not. Check the post about Assumptions PingPong, I think.

  30. “I recall once in a supermarket cue, that a mum apologised for her little boy staring at me explaining he was autistic, to which I ansered something like, that makes two of us. That seemed to take the pressure of her concern anyway, and she told her boy, look, theres someone else whose special like you, which I suppose on the face of it, might also have been considered rude, though I think actually she was probably relieved to find someone who was not annoyed at her son.”

    I find it hard sometimes to interact with parents of disabled kids in public because they seem embarrassed about their children. For example, like many teenagers, I have pimples. At this one program where I was volunteering with autistic kids, I asked one girl how old she was. She replied “what happened to your face?” I knew exactly how to deal with her (I said “answer my question and I’ll answer yours” and after she told me how old she was, I told her I had pimples on my face) but I didn’t know how to deal with her mother’s embarrassed admonishing of the girl. What I did was interrupted just as the mother was about to apologize or tell her daughter not to do that and responded in a way that made it clear I wasn’t ashamed of having pimples.

  31. Lord Alfred

    Speech does not desert me voluntarily.

    Language deserts me, and consider the heirarchy of speech and language. The top level domain goes. Even a speech synthesiser is not a lot of help in such situations as I cannot parse any grammar so what I might write is as fragmented as what I might speak albeit that alternative musculatures to the oral tend to be a little more available.

    Flash colour image world flash on flash turn mutate swivel

    A world so rich there are never enough words in any language or all to express it.

  32. Your Majesty, the Laurentius-rex, I think you hit one of my loose nails on the head there for me. Sometimes, I flow great and sometimes, I flow poorly with language. Sometimes it seems I have the thoughts but no language, the language but few thoughts. The language but no speech and then there’s the speech without much language or thought or perhaps very simple language. Uh uh uh, uhm, yah. ;)

  33. n, thanks…but I’m not sure when I should “just ask!” or “don’t ask me that! NOYB!”) and then there’s “it never hurts to ask!” (oh yah? I can think of a lot of things that might hurt if I were to ask).

    So, while I’ll read Assumptions Ping Pong, I shouldn’t bother too much.. I won’t read between the lines that someone wants to be asked unless they say so clearly. My judgement is voting NOMB here. (none of my business) ATM. In either case, a wheel chair was mentioned so I don’t think totally unfair to bring up or a big deal either. I am sometimes tempted to change subjects for the sake of doing so when I’m uncomfortable and there is perhaps cautiousness…when is it good or bad? Generally speaking, I think communication might be better but not to cross lines. I do recall reading the ping pong article a while back actually…but perhaps its worth rereading to see where you come from. Sorry for being verbose…just having some mental logorrhea.

  34. Ok, just realizing, I’m doing what the article is talking about but there is a subtle difference of protocol or is there between in person and online. Anyhow, ballastexistenz, if you care to answer/comment whatever I’ve brought up, I am directing to you too. I do want to comment again though that I think it’s perhaps all too common for there to be the “eggshells” (or are they ping pong balls?) around us and I have to laugh at the stupidities a little in hindsight sometimes of how strangers act or fail to get some very obvious things. It’s like they lose the common sense like I seem to when I’m trying to drive and carry on a conversation with the passenger at the same time. Some situations are best avoided altogether.

  35. Lord Alfred, I was just trying to say maybe it’s not all that complicated.

    Amanda, I think I have third-personed you on your own blog. Ugh, sorry!! And if it IS all that complicated, please correct me.

  36. My son has AS and I get these rude questions and stuff all the time. people saying “will he be retarded and not be able to function on his own when he is an adult” (YES, they used the word RETARDED) As if having quirks or not being very skilled with pragmatics, he tends to run off at the mouth, big deal. But I find it very insulting when people feel it’s their business. I hate it so much when people will talk about my son when he is right there. He is highly intelligent and has no problem answering questions but mostly, why the hell is it their ‘RIGHT’ to interrogate us anyway?! All I can say is, society at large is ignorant! Sometimes you have to laugh at such people. They’re the ones with ISSUES.

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