Tag Archives: Communication

How (not) to ask me questions.

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This post is in the spirit of Eyeballs eyeballs eyeballs. Picture the person in strong/bold letters as talking very rapidly and very loudly with only the shortest pauses in between.

DUUYUUWAHNNIKAEH’? . Let’s see… “cat”, “do you,” what is she… how do I connect these to meanings… YORSAENWIHCHDUUYUUWAHNNIKAEH’ (head goes blank again, blank look must be on face) KAEH’ KAEH’ (WAVE OBJECT IN FACE AND START SLASHING HAND ACROSS IT) (okay what was she saying again, something about cats, why cats?) DUUYUUWAHNNIKAEH SUHMPEEPUHLLAYIK DHAIRSAENWIHCHKAE’ DIHNDHUHMIDUHL
“do you want”… “some people like”… argh why won’t she give me a minute to think? SUHMPEEPULLAYIK
DHAIRSAENWIHCHIHSKAEH’
why does she drive out any words and meanings I’m figuring out by piling more words into this? (IMPATIENTLY WAVE OBJECT IN FACE AND SLASH HAND ACROSS IT) KAEH’KAEH’LAYIKDHIHS …argh. Just say yes and she’ll stop.

Translation:

She’s holding a sandwich on a plate. She says, “Do you want it cut?” I sit there looking confused, finally having figured out that these are words and that one of them sounds like “cat”. Within half a beat of me figuring that out she says, “Your sandwich, do you want it cut?” This drives all the interpretation out of my brain and I have to start over. While she’s saying it I’m just barely getting meaning out of the first sentence. And as I slowly progress in understanding them, she keeps interrupting it. “Cut! Cut!” She mimes cutting through a sand with her hands. “Do you want it cut? Some people like their sandwiches cut in the middle.” I’m still trying to figure out what’s going on, having so far only managed to retain the idea that I’m being asked a question. She mimes cutting again. “Cut. Cut. Like this.” Etc. I figure out she’s asking something, that it’s in a yes/no question pattern, and that if I say yes she’ll probably stop throwing words in my face.

The problem is that a question has urgency about it. It has “you have to answer this” somewhere in it. It turns on this whole program in my head devoted to giving random answers to questions to get them to stop. And then a lot of people will barely wait a single moment after asking a question, to go on and ask more of them. They don’t realize that as they’re doing this they’re just throwing on more and more language to process. And that each time they ask a question, the message I get in my head is “Urgent, urgent, needs response, now need to figure out how to respond,” and I have to then backtrack and figure out what the question is if I don’t want to just give a random answer (I have a bunch of templates stored in my head for question types that have easy enough answers to randomly pull out to get people to stop asking them). And then halfway through my figuring it out it gets interrupted by another message of “Urgent! Urgent! Answer them!”

So the end result is a huge pile of urgency in my head and no comprehension until the person has finally shut up and gone away.

And text is only slightly better than this. If you expect me to rapidly process a question, you’re expecting that it’s a really good day for language processing. If you keep asking them over and over, you’ll just add to the stuff to process, not make it easier to answer. And there are a lot of people whose style of question-asking seems to be along the lines of stacking questions on top of each other. Sometimes it’s assorted variants on the same question. Sometimes it’s slightly or even majorly different questions asked two at a time and leaving me wondering which one to answer — “Do you want to do something do you want to go to the park?” is one of my least favorite question styles. It’s like a run-on question.

I noticed some time a year or two ago, that I do a lot of my communication with staff people without relying on the language content, and that one of the problems with new people is the amount of language I have to produce and understand in orienting them to the job. Someone who’s been here awhile will hand me something, and say what to do with it, and I won’t even hear them saying what to do, I just know from routine that it’s always what I do with it and the words don’t matter. Even if the words are something I have to answer, I find myself often able to give yes/no answers without having a clue what the person is saying. I noticed that a huge amount of the time people are working for me, they have no idea that I am not hearing the majority of the words they’re saying. I just know all the motions to go through and all the responses to give and I do it largely based on where they are positioned, where I am positioned, how each of us is moving, and what objects are being handed around.

And when people — strangers or just people unfamiliar with me — do notice that I’m not noticing what they’re saying, they seem to have a tendency to say something in a snippy tone along the lines of “Do you have a hearing problem or something?”

Note that I can often figure out what people are saying, sometimes even quite quickly. But it takes a certain level of effort, focus, concentration, energy, and ability to do that on that particular day. It helps if the topic is very familiar. And none of it ever feels natural or easy.

The problem is that explaining my incomprehension to others is so familiar that I can do that, and most of the responses, by rote, leaving them with the impression that their questions and responses are somehow all being understood when they’re really not.

I also do understand a whole lot of things with a delay. I now understand the entire conversation this person had with me half an hour ago. And there are still vivid memories as far back as 25 years ago that I am still trying to figure out the words to. I go over and over the sounds in my head and try to put them together into something meaningful. Often one day I’ll just spontaneously realize what someone said to me when I was 3 years old.

There are also times when there’s no comprehension possible, including no awareness that the words are even something that ought to concern me any more than white noise would. All of these different things are largely the same as the auditory version of the way I explained reading to be in my post titled Safety Hazards.

But at any rate — the best thing to do with a question is make sure I’m paying attention (and this doesn’t have to mean “looking at you”, it means focused on understanding what you’re saying), then ask one question (not a double-decker question either) and wait for an answer. You might get a quick one or a slow one, but the more you throw words on top of words, and the more pressure you put on, the more you slow me down. And the more likely you make it that I’ll give an inaccurate scripted answer if I answer at all — which isn’t fair to either of us, so I try hard to suppress that. If the interaction is over something where you can hand me an object that’s capable of prompting me in the right direction, all the better.

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A difference in perspective.

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“She’s so happy” is what someone just told me about Fey, my cat, who’s visiting me where I’m staying right now.

Actually, while Fey is a lot of things right now, happiness isn’t what I’d summarize it as. She’s glad to see me, but she’s also edgy and scared about being in a new place (and about me not being home yet), angry at me for not being home, annoyed about having been picked up, and frantic in her attempts to get me to do something by nudging my hands and face hard and in rapid succession.

I notice this sort of thing often. I obviously can’t read a cat’s mind and know precisely what she’s thinking about everything, but I can get a pretty good clue through body language of the assorted layers of emotions she’s got going on.

Other people often seem to have a limited template of cat emotions in their heads.

Such as, as I finally deduced today, “Purring means the cat is happy.” Which is a gross oversimplification of the use of purring by cats, and which seems to lead to humans totally ceasing all further observation of what the cat happens to be doing in addition to purring, as well as all comparison of the sound of the purring to all other purring the cat has done.

Then there are more “subtle” things like not knowing the difference between a play-bite and an anger-bite. Which doesn’t seem subtle to me, but after watching a lot of people interact with cats, it seems like many people don’t get it. I’ve seen too many people attempt to “play with” (read: invade the space of) a heavily annoyed cat, only to conclude the cat is “mean” when they get hissed at and scratched. And all too often, even after the hissing and scratching, they might say in a sing-song voice, “You meanie,” and go back for more. Putting themselves at risk of a serious bite and taking every warning sign the cat has to offer as a sign of “playfulness”.

That last one, I had trouble understanding for awhile. I thought the humans doing those things were being cruel themselves. Then I ran across a person who seemed absolutely contradictory: She was very conscientious about most things, but at the same time she seemingly terrorized my cat and then laughed about it.

A friend pointed out that she probably wasn’t able to read feline social cues very well.

And that did turn out to be the problem after all.

But it seems like to many people there’s only one set of nonverbal cues that exist: That of the neurologically standard members of their own species in the culture or cultures they are most familiar with.

Anything beyond that appears less nuanced, but often they conclude that rather than being unable to pick up the nuances of an unfamiliar species, neurotype, or culture, then these nuances don’t exist unless the unfamiliar people in question develop nonverbal cues specifically intended to communicate to the person doing the observing. They might even, if they don’t even manage to learn an abbreviated version of the nonverbal cues in question, conclude that the unfamiliar species, culture, or neurotype has no body language. Which leads to being stereotyped as mysterious, sinister, defective, deficient, or some combination of the above.

I’ve always found it interesting, how if autistic people don’t understand certain things about non-autistic people, it’s because autistic people are disordered (deficient in understanding “nonverbal cues” in general, as if there is only one kind), but if non-autistic people don’t understand autistic people, it’s also because autistic people are disordered (deficient in our ability to produce “nonverbal cues” in general, as if there is only one kind). People seem very resistant to the idea that there are many levels of detail and nuance that they are missing in this regard.

Holiday “joy”, and assorted communication stuff.

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I am starting to wonder whether disabled people who happen to depend on paid staff for everyday tasks have a very different conception of assorted (secular and religious) holidays than other people do.

I’ve had a relatively new staff person and a completely new staff person this week, which has meant not only a lot of important things not getting done, but also a lot of things that are important for them not to happen keep happening. Meanwhile, my friend has had no staff at all some days and completely new ones for very short periods of time other days.

Which is probably why I’ve ended up mildly dehydrated and both of us have ended up pretty exhausted.

Meanwhile, of course, there’s other things going on. My dog has a UTI. I went to the pain clinic only to get poked and prodded around the neck area and made to turn my head in such a way that, whatever combined effects those had, I ended up vomiting, a lot, a few minutes later, and being queasy the rest of the day. My communication device’s USB port finally completely broke, and the loaner the company had been claiming to be about to send me since sometime in November still hasn’t arrived, nor do any staff people know about that since none of the ones who were here this week were around in November.

But there’s sort of a point to this besides whining. Seriously. ;-)

I’m not sure that a lot of people fully get the point that despite a working communication system, it doesn’t mean I’m going to be able to tell everyone what’s wrong at the moment they need to know it. I might not even be able to make it over to the $30ish computer I got for everyone to leave notes and scheduling information for each other on.

There are projects that have been supposed to happen starting since the day I got services here. They haven’t happened. I don’t know why. I do know that repeating myself about them occasionally doesn’t seem to do much. I’m told people are “working on” them. I haven’t seen the finished product.

I’m supposed to get a handicapped parking placard. Been supposed to for years. Even that, which is simple as projects go, hasn’t happened. Despite the fact that everyone on my support team has strong incentive for it to happen, especially in the winter with the chair and so forth.

I guess I’m not a very good nag. Especially when I find myself only able to communicate things to the people around me that don’t necessarily have to do with everything I need to communicate. There’s this weird assumption going around that if someone really needs to say something, it’ll get said, if they have the means to say it.

I don’t work that way. I have a long medical history, noted in my records (often by the staff who’ve had to deal with the firsthand results), the worst parts of which often result from me not working that way. Which reminds me, several medical professionals in about three different disciplines have been telling me I ought to consult with a surgeon soon. (I have this weird image of pulmonologists sitting around telling gastroenterologists something like, “Do something to keep ‘your’ fluids out of ‘my’ lungs.” I know it doesn’t work that way, but for whatever reason I find it sort of amusing to see people in various specialties as owning assorted sorts of body parts.) But I think everyone thinks it’s someone else who’s going to write the referral, and I haven’t been asking (in part because too much else has been going wrong and for a fairly large part of this month I wasn’t even usually awake). And then when I do talk to that doctor, all possibilities (whether having surgery or not having surgery) are somewhat scary and I’ll have to actually make decisions.

But it’s not even just medical stuff, it’s everyday stuff. I just don’t say it. Can’t always say it. And there’s so much of it. Sometimes the sheer amount of stuff I’ve got to say is the reason I can’t say it. Sometimes it’s the fact that if I told one part of it they’d do the wrong thing and I don’t have the energy to tell them how to do it right. There’s just a lot of stuff not getting done and very little of it that I can communicate about. It’s not that I’m not trying, either. It’s just there’s so much of it. I remember a staff person who got to know me really, really well, who just assumed that (where I lived before) when she left the house I got up and did a lot of stuff. She had no idea that I sat around in one place most of the time, and that this was the reason she would leave when I was in that spot and come back to find me in that spot, despite me having a need and desire to get up for a wide variety of reasons. (She did find out when I turned up with dehydration eventually and she asked a few questions that elicited the answer.)

Ideally eventually everyone will know it or a large portion of it. It’s just amazing to me how haphazard this process is. It turns out I’m some sort of strange beast the agencies haven’t encountered much: I am my own guardian, I communicate for myself, I receive their services, I’m classified by their testing system as severely disabled, and I have no clue how to tell them all this stuff that they normally hear either from their clients or their guardians. Usually, at least ideally, there’s supposed to be some other person pointing out what’s needed, but there’s nobody like that for me. My parents are across the country. I’ve got one friend here who has enough trouble directing her own services. I end up reading assorted manuals designed for everything from physically disabled people hiring their own support staff to parents of disabled adults trying to set up assorted support programs, trying to find something that would contain the lists of stuff that needs to get done around here. Sometimes I find stuff and sometimes I don’t, but nothing fully covers it. So in the meanwhile I just keep getting told how strange I am (first words out of one case manager’s mouth was “Our team (the one for people without roommates) doesn’t deal with people with this many needs this often”, and I spent the rest of the time he was my case manager trying to keep him from forcing a roommate or worse on me.)

Somehow there has to be something that can provoke the list of answers that would allow me to say what needs to get done around here (beyond the checklist assorted staff have already developed on their own). But so far I have not found it. And none of this situation seems fair to either me or to people who have to work for me (but who aren’t told much if anything, and of course with funding this low are not allowed to “shadow” other staff for very long before starting). There also needs to be some central point for information, and so far that’s only partway accomplished (and large, large pieces of it have not even been started, nor am I sure they ever will be unless something changes).

Naivete

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I was talking to a friend the other day on the phone. And somehow we got into talking about some of my weak points, including what must look like astounding levels of naivete about some things. I remember a staff person I used to know (actually one of the best who ever worked for me) where I wondered whether she was neurologically atypical in some way, because she had a lot of really crappy life experiences at the hands of others, yet still seemed overly trusting of other people in ways that were always getting her in trouble.

I tend to assume in some way that other people have good intentions, and that conversations are happening in good faith, rather than some other kind of motive being involved.

More specifically, I tend to assume that people are interested in exchanging information, and are interested in figuring out what is real and what is right or wrong ethically, beyond whether their pre-existing viewpoints happen to be right or wrong about it.

I tend to especially expect this of adults, possibly because my commitment to that sort of thing became conscious and strengthened when I moved out on my own as a young adult. (This sort of thing is nearly always a gradual process, but there’s a difference between being committed to it even if you screw up, and not caring at all.)

All of which is a somewhat ironic example, of course, of an area in which I’m not always taking in the real world as opposed to what I expect of it. I often even get the gut reaction (and from what I’ve been told, I’ve got a highly accurate gut) that someone is not trustworthy, and yet still continue to treat them as if they are, while trying to remain internally wary. I can’t tell at all if this is a sign of ethics or a sign of extreme foolishness and stupidity.

Anyway, I mentioned all this to my friend, and she told me that she’s noticed this about me for awhile, in a way that sounded like “That’s really obvious.” I just wonder what to do about it.