Being caught off-guard


I was caught off-guard in a major way earlier today at the park.  I was already jumpy and out of sorts after my staff had, accidentally and as a result of a sudden mechanical problem, almost squished my dog’s head in a car window.  Then at the park we met a special educator.

I can only blame my lack of having my guard up on the earlier things today and my general cognitive friedness lately.  I answered every question she had, in detail, in more detail than I like to give strangers.  She was a special ed teacher, she had a few autistic students, and wanted information about communication devices.

Generally, I’m willing to give information about communication devices to people who want that information.  It’s when they start getting into the mechanics of my own functioning that I start to get antsy.  But I had no way of stopping the questions or my responses to them at the time.  I’m not sure I can explain how this feels to a non-autistic person and have it make any sense.  It’s a sense of violation, but at the same time I did absolutely nothing to stop her or let her know things were getting invasive.  I didn’t have any brain left over for that, I was too busy answering questions.

To make matters worse, my staff, who had only just met me for the first time this morning, started answering questions and volunteering information that I wasn’t comfortable with.  She told the person about my website.  She told the person information about me that isn’t even true, like that I never need anyone to push my wheelchair or anything.  She based this on the fact that I didn’t want anyone to push it on the level ground in my apartment building or on the mostly-level ground of the park.  Today.   She talked about me in the third person, giving out information both true and false that I’d never told her she was allowed to give.  And I didn’t — couldn’t — stop her.

One of the reasons that people in my position have such a hard time enforcing such simple rights as privacy, is because everyone acts like those rights aren’t there to begin with, like it’s totally natural to be discussing the intimate details of how someone’s body functions on a day to day basis.

And I can’t figure out how she figured she knew all those things about me, or could state them in the particular knowing but totally inaccurate way she did.  I have no idea not only how she decided she had the right, but how she decided she even knew me well enough.  She herself judged the interaction a success based on how curious this other woman was about me and how receptive she was to all the information I gave her.

What bothers me is that failing to provide the information did not even cross my mind.  That my staff, rather than doing what she’s supposed to do and actively displaying both to me and to the other person that I have a right to privacy, volunteered all sorts of information that I would have never given out on my own.  Partly because some of the information was dead wrong, and certainly not the kind of thing that a person could know about me in a day.

This feels like a less intense version of the time that two people stood in front of me touching me, talking about sex, and trying to get me into a car with them, and I didn’t realize what was going on until hours later, when I was at home and had time to figure it out.  Fortunately some of my instinctive responses at the time — not to them, but to other aspects of the situation — saved me from the fate they were planning for me.

While today was not as extreme, the sensation is similar:  Two people were being invasive and intrusive, not physically but in other ways, and I did not even think to stop them until long after I wasn’t talking to them anymore.  True, they were not being intentionally predatory the way the sex-talking couple were, but they were still being invasive, whether they knew it or not.  Not knowing something is wrong doesn’t make it right.

I don’t know what to do.  I don’t know how to explain this to anyone who’s never been there, in a way that makes sense.  Maybe this:  I’m supposed to be learning not to let people into my apartment just because they knock on my door.  Because of this, staff are supposed to knock and wait for me to open the door or tell them to come in.  They are not supposed to do what they’d done before, and just enter my apartment as soon as they got here.  In the same way as I lack the standard alarm at strangers entering my home, I also lack the standard alarm at strangers both asking me personal questions and talking as if they know things about me that no stranger could possibly know.  Just like staff are supposed to be making it easier for me to do things the right way with doors, they should be making it easier, not harder, for me to resist personal questions.  In fact, I bet most of them are trained to, because I’ve discussed this extensively with my case manager.

I still don’t know what to do.  This person now knows things about me, some of which almost nobody on the Internet knows and only a few people in the offline world either.  I don’t know anything about her other than that she’s a special ed teacher and what kind of dogs she has.  This seems uneven, disturbing even, but I don’t know what to do about it.  I especially don’t know what to do with the fact that she’s been given false information or at best half-truths about me by someone who doesn’t know me at all but apparently thinks she does.

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.

20 responses »

  1. Sorry, Ballastexistenz.

    This sounds like a nastily ramped-up version of the intrusive questions I used to get from creepy men – and which, for years, I had no idea how to deal with. Except that my situation was easy: somebody pointed out that I was under no obligation to be polite or cooperative if I felt someone was being creepy. Oh, ok! So I stopped being polite and cooperative, and simultaneously stopped being targeted by creepy men.

    I didn’t also have to deal with badly-behaving staff. Again, sorry.

    RE: What to do about the special-ed teacher in the park: that one’s easy. There’s nothing you can do. She will go off believing untrue things about you and knowing more about you that you wish she did. That’s it. It’s been done. Nothing you can do.

    RE: What to do with your staff. That one’s harder, because you do have decisions to make about that one.

    Warm wishes.

  2. I do understand, albeit from a different angle – but I can at least relate my experiences with dissociation to the experiences you wrote about here.

    Staff are supposed to observe a ‘no talking’ thing – you don’t talk about your clients to anyone. And when you do, you don’t use their real names or any identifying details that would make it simple for someone to know your client in the street. Not without written permission. (And I actually have that for two of my past clients, and I still use just their initials or an assumed name when writing about them.)

  3. That’s a horrible thing, to not be able to control the output of personal info. I’ve had a social awkwardness that keeps me from approaching strangers. I might be curious about them but won’t talk. I’ve been reprimanded and teased for that. We are trained that we should always be “nice”.
    We have trouble with strangers approaching us when my son tantrums. One lady claimed to be a doctor and told us to stop feeding him pancake syrup. (we hadn’t started eating yet)
    Lately, though, my son is older and verbal, so adults assume we are kidnapping him.

    I wonder if this staff is employed privately or through a medical agency? HIPAA should govern privacy.

  4. Would you feel better if you had something prepared to say if you saw the woman again? I’m not sure if that helps. I’m thinking you could maybe undo some of the misinformation and perhaps tell her to please not repeat any of what she was told, since a good portion of it was inaccurate. Do you have something written for your new staff that might give them some brief instructions, the high points for things that happen outside of the apartment? I can see me being the staff and letting my mouth run off without thinking…

  5. Ohhhhh, my. All the responses I have seem either intrusive – like my personal response to the staff’s behaviour/ implied attitude/etc. -, or teaching my grandmother to suck eggs – for you have more experience by far than I of employing people.

    It’s a situation I recognise very well, however; people asking invasive questions/ taking one’s autonomy from one (in the case of the staff) and the ‘polite’/ ‘appeasing’ script taking all one’s processing capacity, so that there’s nothing over for ‘recognising intrusiveness’. Predatory types especially, but by no means only. Also the thing about having others’ inaccurate views of one propogated, and being powerless to do anything about it; and possibly powerless to recognise the inaccuracy at the time.

    If this woman has your web address, maybe she’ll use it, and see this post. That might be helpful, as damage limitation. (And education — but educating people at that price is a bit much!)

    I’ve a nasty thing there’s nothing you can actually do, *except* to use this to make damn’ clear to your case manager and anyone else who needs to know exactly what you require (in both applicable senses of that word) of staff. Maybe write down a ‘this is o.k.’ list – communication devices questions o.k., personal questions not -; and have certain explicit things that every staff must understand and agree to before coming to you – no answering personal questions without your explicit permission being one of them. I think ‘personal might have to be defined, which isn’t easy.

    I don’t know how applicable that is to your situation, but it’s all I can think of. (And I’m in a somewhat ‘altered’ state typing, so apologies if it’s incoherent or junk.)

  6. Augh, that’s an icky, icky feeling – and generally it creeps up while the information is trickling out, but it’s so vague and inarticulable (yeah, not a word) at the time, and it’s mixed in with faint twinges of the duty to assert your right to privacy and guardedness against appearing overly sensitive and ach, ach, ach. Sorry, babe. That’s an ickiness that probably can’t be fixed mechanically. It’ll have to just subside with time, ‘cause mulling over it more will most likely just muddle it more. I’ve always found that rehashing, especially when it’s unclear what another person’s impressions were, just tends to bring stuff to the foreground that was probably best left to fading memories.

    Ms. Clark has an interesting idea – having something prepared, on the off-chance you’ll see Mme. Special Ed again. You may be able to clarify some things in writing. The problem is, folks tend to zero in on what they want to hear anyway, and if this person found particular aspects of your functionality particularly fascinating, dismissing the untrue things as untrue may do more harm than good, because again, it brings into focus something that may not have been in focus before, and gives them the impression of you wanting to cover something – something juicy. Nosy people sniff out what they think is being deliberately hidden. Also, making specific clarifications tends to counteract the idea that it was nobody’s damn business in the first place. Saying “I normally don’t tell people this ‘cause it’s not their business, but I want to tell you this because you’ve received false information” is appropriate – but people will tend to forget the “not their business” part in anticipation of the information they’ll receive.

    As regards your staff, what she did was absolutely unacceptable, and whatever reprimand is in your capacity is certainly in order. Staff should behave as living tools – not like freakin’ tools. A personal assistant’s job is to assist you to the extent you want assistance, and make herself as unobtrusive as possible, and nobody – especially not someone who just met you – should ever feel entitled to serve as your representative without your explicit permission. If you’re going to have to see that staff again, you might want to have a heart-to-heart speech prepared, ‘cause going behind her back would only create tension. If you can have her dis-assigned from you, she should be reprimanded – or “re-educated”, as they say, for the benefit of future employers.

    The one thing your staff may have done in your favor, albeit without your permission, is directed that person to your website. If Special Ed’s a conscientious reader, she’ll get the picture.

  7. I’ve talked to my case manager. He told me — and I did not ask this of him — that this woman will not be working for me again, and that this is really serious actually, like Janna and Kim pointed out, not even legal.

    It took a couple descriptions before he got that the stranger and the new staff were not the same person (I think because they’re both really strangers and I was calling them both “she”), but once he got it, he definitely got the seriousness of what had happened, not just the legal ramifications but the implications for safety in the future.

  8. Tell me if I’m way off here, but I’m guessing you’re still very significantly in the throes of disorientation and “general cognitive friedness” — maybe more significantly than you’ve indicated. I get the feeling that under usual circumstances you’d not only have an appropriate response to Special Ed, but also an immediate recognition of what your staff did as unacceptable and illegal. It seems you’ve had the opportunity to frequently have staff working for you who are familiar with you and with whom you have an understanding. I know it may not be feasible, depending on the kind of agency you’re dealing with, to make a “special” request for familiar staff, but it might be unnecessarily stressful for you right now to have to play the “guess who’s coming”/”getting to know you” game. Again, I don’t know what your situation is as regards hiring staff, and I certainly don’t mean to imply that I have particular authority to give advice one way or another, but you seem to be seeking suggestions in this post — and this is a concrete one I can offer: See if you can get familiar staff, at least until you feel not-so-fried.

  9. Yeah, probably more significantly than I’ve noticed. One of my friends is always telling me, “That day when you decide that going outside is a good idea and everything’s just fine — it’s not, trust me.” She walked into traffic the last time she came home from a conference, so she knows what she’s talking about.

    I feel a lot better, but some things aren’t entirely “there” yet. At this point, it’s the much higher-order stuff that’s not back, rather than the basics, which seem to be fine. Also I have had a worse-than-usual migraine screwing with perception, and that particular day my staff had managed to (accidentally, mostly part of a car malfunction) jam my dog’s head in the car window which meant I was running on a lot of adrenaline after watching my dog screaming and trying to get her head out after the window froze. (And after being unsure exactly how deeply the window was digging into her neck — which turned out to be fortunately barely at all.) And I’m on enough Dramamine to get through the day and stay hydrated and fed that this is probably making my thinking fuzzy too.

    Not that it’s prevented me from writing, so far, eleven pages on the AutCom conference and not being anywhere near done yet. That part seems to be working. Some of the parts affecting judgement and stuff, however, are still very far offline.

    Also, I really do lack… unless I’m really seriously on top of things I can often revert back to not realizing I have certain rights. A staff person (totally different agency) walked in today without even knocking, just opened the door and walked straight into my apartment, and I didn’t notice there was anything wrong with this until later.

    One time, what I think was a lawyer for the other side of a possible court case, did the same thing, and wandered around the apartment looking at all kinds of things and asking me questions (that I answered incorrectly because I didn’t understand some of the words she was using the same way she understood them, for instance “recently” to me meant “in the past hour or so” so I neglected to tell her about something that had happened the day before). She just kind of wandered in and looked at stuff, even in the bathroom. That was the first time I realized that people aren’t supposed to do that, because when I casually mentioned it to my roommate she had a very strong reaction to what had happened. (And I find it disturbing that the person picked a specific time, one of the few times, when my roommate was out. I’m not sure if that’s coincidence or not — a lot of people in person don’t view me as particularly bright.)

    Institutions totally drive any belief in privacy out of a person, that’s why I try to get staff to work so hard to make it normal for me to have privacy, then I’ll get used to it and if someone walks in without knocking I’ll be alarmed.

  10. This sounds awful. I’m glad the case manager helped you get rid of the staff. She had no right, and was being both insulting (treating you as a conversation piece, not worrying about what you’d want to have shared) and dangerously irresponsible.

    I don’t know what it’s like not to be able to keep myself from answering when I don’t want to, but I imagine it’s particularly difficult in situations like this. I have experienced people sharing personal information and medical details clear over my head like I wasn’t there, and I’ve definitely had people on the street act like they’re entitiled to my personal and medical history. It’s degrading, in a way that a lot of people who haven’t experienced it don’t seem to understand.

    I still think there’s an issue of fundamental disrespect. Maybe not less than human, but definitely less than adult. As if “someone like you” can’t and shouldn’t be allowed to control any aspect of your life, and every normal adult has a perfect right to manage your behavior.

    And,just to make it explicit, if the Special Education woman is reading this, please don’t presume on the accuracy of the information you got, or share it with people. Hopefully, now that you understand the situation, you’ll help correct things.

  11. You know, as a (supposed) NT, this actually sounds rather familiar. Different scale, I suppose, but how I deal with people who try to cross my personal boundaries depends largely on my mood, exhaustion, social energy, etc. I think in my own case it’s less often a problem of giving out information whether I want to or not, and more a problem of yielding to social pressure or professing an opinion I don’t *actually* hold, but to me at least it feels like there’s a fundamental similarity between the two. And what I know for sure is I hate to get home, have a cup of tea, think back on the day, and ask myself, “Why in the *world* did you say such-and-so to that person?” Does this make any sense, or am I mistaking the basic issue?

    Maybe one reason this experience may seem unfamiliar to NTs is that it’s a lot less likely to happen at all — for some reason, people seem to take basic social rules like “don’t pry into another person’s very personal life without explicit permission” and throw them out the window when they’re dealing with someone they perceive to fall outside norms. [Grr]

    And then there’s the famous “If only I’d said [witty comeback that puts invasive person in their place].” Which goes to show that *everyone* shuts down at some level in certain situations.

    Those are my rambling thoughts on the matter, anyway. I’m sorry these women had so little sense (and more importantly, respect). Good luck regaining your general equilibrium and energy after the conference.

  12. I’ve talked to my case manager. He told me — and I did not ask this of him — that this woman will not be working for me again, and that this is really serious actually, like Janna and Kim pointed out, not even legal.

    You didn’t ask it? You *are back in not-having-rights mode, aren’t you? (Shuddery gibbery horrors.) I hope recovery is pretty fast, and that you’ve got safe people around you *now*.

    See if you can get familiar staff, at least until you feel not-so-fried.

    That’s a really good point. Only instead of having to set that up *when* you’re fried, the ideal would be, next time you have something coming up which is likely to have that effect, to book familiar-and-trustworthy staff in advance, and make sure they’re notified that one’s going to need double back-up so far as judgement goes. Knowing for oneself that everything isn’t fine, and that going out isn’t a good idea is too fragile.

  13. Last year around this time of year, my case manager (a different one) told me:

    1. That I had a long history of firing staff and that this was known. (Prior to moving here, I had had the exact same staff person, with almost no complaints, for several years.)

    2. That staff did not like working around me because I was disrespectful to them, so therefore I did not have any right to be remotely picky about staff.

    I asked repeatedly, orally through an interpreter and in writing, for details on what I had said or done that was disrespectful (so that I could either correct a misunderstanding or be more respectful), and the case manager refused to tell me, which makes me suspect he really meant that I didn’t have a lot of respect for him — which I didn’t, but which didn’t tend to carry over to staff. (Finding out what really happened to some of the staff who’d quit working for me — including one who’d moved out of state, after only ever saying complimentary things about me — also made me seriously suspicious later on about how much of this was just scare tactics.)

    3. That the reason I didn’t want the exactly two staff (out of a lot, including people who weren’t very good at their jobs) I didn’t want, was entirely due to personality conflicts. (Both of them were incompetent in areas I needed competence in, to the point of dangerousness. One, also, was constantly evangelizing to me and expecting me to follow the advice of his religious leaders.) He did not back off on this despite repeated corrections, until he realized that I had witnesses to some of this.

    He told me that if I didn’t want the staff he sent, then he could log me as refusing services altogether, and recommend me for residential care. (Which, while not resembling standard institutions in that residential care means having a roommate, is still pretty institutional in many cases, just the “institution of one” sort of institutional.)

    Then almost immediately thereafter he and his boss wrote a letter to me that demanded certain things of me. Including, for instance, wanting me to release documents that didn’t exist, from an agency that wouldn’t have had these documents even if they did exist, to get information that they could have obtained just by asking me. Or, another release for asking a professional who didn’t know certain information, about that information that said professional did not know, when the information was again stuff they could have learned by asking me.

    I was told that this information was vital to a legally-mandated process (I asked repeatedly for details about this process before we could have meetings to “start the process”, and was told that I didn’t need to understand it), and that I was holding this process up (by wanting to know what it was before I submitted to it, because of past experiences with people doing such things without me but my presence at meetings was considered permission enough to do so), and again threatening me with residential care if I didn’t comply immediately.

    He also quit talking to me altogether and only agreed to communicate me in ways that I had no way of getting to (email, during a time when I was first on the streets and then in a location where I had no email access).

    (This all, interestingly enough, was from a couple of people — the guy and his boss — who demanded upon initially meeting me that I trust them without reservation. Which seems like a ludicrous demand to me, and immediately made me aware that they were probably in fact not trustworthy. My current case manager is aware that trust has to be earned, and has never demanded my trust or tried to view me as having “trust issues” just because I don’t immediately have faith in a random representative of a government agency.)

    In response to that, I filed a formal complaint, and also, once I got net access again, got people from all over the place to write to the agency to let them know that people all over the world were aware of what was going on and did not want me institutionalized. (This is an advantage I’m very aware of having over autistic people — like some I’ve known offline — with no net access or very little other access to the international autistic community or other advocacy circles.) Many of them were predictably told that there are no institutions in this state (untrue, there are still distributed institutional power structures, and group homes and nursing homes and so forth, just no state institutions), but that of course I couldn’t be discussed personally because of confidentiality.

    But I suspect nonetheless that this all did have an effect on how seriously I was taken. Unfortunately, it was clear in the meeting that the person did not take other clients at the agency very seriously, and in fact considered them “unintelligent”. But, I got a new case manager out of all that, which was what I wanted. And I got a really good one, at that.

    Nonetheless, I’m still terrified of asking this case manager to not send someone back. Unless there’s a very serious problem (more serious than things like breaches of confidentiality), I’m unlikely to suggest it, and likely to try nearly everything else before finally saying I can’t deal with the person anymore. Which ends up meaning I don’t really get to pick who my staff are, they get sent to my house in whatever order somebody else chooses and I have to reject one to get the others, there’s no trial period or anything.

    And I’m aware that they’re very short-staffed at the moment.

    But, yeah, there are many areas in which I forget I have rights. The right to actually pick who comes into my house on the basis of anything less than survival-level concerns still seems like a luxury to me, the way getting to eat every day seemed a few years ago.

  14. I was afraid there was gonna be something like that. The compulsion to be “good” for fear of losing precious services, and the institution behaving as though it were doing you an extraordinary personal favor by overseeing — by law, and then citing the law, murkily, as their reason for obstructing — your right to have basic needs met. Bastards. Shuddery gibbery horrors indeed.

  15. Yeah pretty much.

    And the worst thing is — the new guy doesn’t act like it’s a huge personal favor at all, but I’m starting to take it almost like a favor, or a luxury, when he actually does his job. Not because he’s particularly bad at his job, but because so many before them have acted like they don’t have to do their jobs. I shouldn’t be stunned into awe and gratitude by someone who does their job, I really shouldn’t.

  16. Recently I was volunteering with a Rett girl who has very little communication that I understand, most of it is body language and such. I volunteered information about her to various people. Two examples are:
    Someone asked her “what’s your name?” and she replied “go home” and I said “Her name’s ___, she just says ‘go hoime’ a lot. I don’t think it means she wants to go home.”
    In private, I talked with my mom about her, knowing my mom wouldn’t spread this information around.
    Is that OK?

  17. If you volunteer with her on behalf of an organization that is governed by the Health Information Portability and Accountability Act (HIPAA), then talking to your mother about her was NOT okay, as in technically not legal. Assuming that anybody, even your dear mum, will not spread information around, is not viable in a legal sense. That’s how secrets get spread in the first place: “Don’t tell anybody, but . . .” often comes from the mouths of people who were themselves told not to tell anybody. Technically, a diagnosis is protected health information, so calling her a “Rett girl” and giving any information about her situation that could identify her, even if you don’t give her name, could be considered a breach of protected information.

    If the person who asked her name was a random “outside” person, and you gave her name without her permission while working in the capacity of a HIPAA-governed organization, then technically, yeah, someone who is very nit-picky about HIPAA could call you on that. But in that situation, I think you may have committed more of a moral breach than a legal breach, since you cannot assume that your client wants you to volunteer information about her — or that she’s okay with you dismissing what she said as something meaningless or random. Unless, of course, she’s told you “Next time I say ‘go home’ to somebody, feel free to speak on my behalf and answer questions about me”.

  18. If you can get a clear answer from her, or someone who can effectively and accurately interprets for her on what “go home” really means, then you can figure out what to tell people. Is there someone else who’s better at understanding her that you could ask? Some people do have mental disconnects relating to speech, so it might be a case where she says “go home” as a consequence of trying to speak, or purely at random. If she communicates that she doesn’t mean what it sounds like she means, and she’s comfortable having you clarify this to people for her, then by all means, explain. That’s helpful, and appropriate.

    The problem is if you don’t know what it means, and are guessing at why she says that. She could be asking to go home. She could be telling people to go away. It could be discomfort or anger, or any number of other things. If she’s trying to communicate something like this, discounting it because you don’t understand is bad for everyone. So assume as little as possible, and don’t offer information that you’re not sure of.

    As for your other questions, I don’t know the rules, so probably what everyone else said.

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