How much of our lives do people think they’re entitled to know about?

Do they ever think about the fact that they’re asking people to dissect themselves?

What are they thinking about when they do this?

(Is there any possible way to point this out to them that won’t just cause lots of apologetic dithering and then continuing to be just as probing and invasive and inconsiderate? And is it possible to answer one of their questions without then getting forty more?)

Edit: I forgot I wrote this, but I’d certainly love to throw those back at people.


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

40 responses »

  1. What about responding with questions like, ‘why do you want to know?’ or ‘tell me about yourself first,’ assuming you are interested in them. I have a disability, small compared to many, but I have still suffered a lot of probing ignorant questions over the years. I used to get angry and say things like ‘piss off!’ But I have found that turning the tables is often the best way to show someone that they are being inappropriate. Start asking them probing deep questions until they begin to squirm uncomfortably and don’t let up even when it is obvious they want you to. If you have a hard time coming up with things spontaneously as I sometimes do then plan in advance and have a few stock replies rwady.

    Failing that, or if they still do not get the message say, ‘I have two words for you and one of them is off.’

    No one has any right at all to ask private questions unless they are a therapist and you are there willingly.

  2. Corection.

    “I have two words for YOU and one of them is off.”

    Is there a way to edit posts? I hate making mistakes and often only see them after the post comes up.

  3. Oh I’ve certainly thought of doing something on the order of:

    What kind of porn do you or your spouse read?

    When did you lose your virginity?

    What is your breast/penis size? Does it bother you at all? Is breast/penis size important to you in a partner?

    What’s your favorite sexual position?

    How many people have you had sex with in your life?

    What are their names?

    Was it good?


  4. The scary thing is that I’ve tried turning it around. I have a really visible physical disability that’s extremely complicated to explain. People seem to assume that if I don’t want to expound on the precise details of my neuro-muscular development to any passing stranger, I have unresolved psycological issues. Usually it’s because I can’t remember my medical history well enough to discuss clinical technicalites off the top of my head.

    When I have tried turning it around, asking them to detail their personal problems and medical history, I get answers. Extremely detailed answers, given without the slightest hesitation. I get the impression that a lot of people who feel entitled to knowing about my personal life have some problems of their own they want attention for, and use my disability as an excuse to have inapropriate conversations with strangers. Maybe I should start asking about sex, instead.

    Sometimes, though, if it’s people who are used to managing the disabled, such as nurses, special education teachers, and the occasional relative, they attempt to manage me. The questions about my disability become focused on finding out what treatments and services I’m getting, and when they found out that I’m not getting any (in my circumstance, I don’t need or want any), try to persuade me that I should sign up for physical therapy/adaptive sports/student disability service/any number of other things, not because it would solve a particular difficulty, but on some idea that since I have a disability, it, and I, should be managed.

  5. I chose the sexual questions specifically because they’re the sort of thing almost nobody would feel comfortable discussing with strangers.

    Right now the situation I’m dealing with is a parent group (actually more than one). Parent groups tend to be over the top in this regard. It’s like a non-physical version of public medical stripping. (In this case medicalizing and dehumanizing brains rather than other body parts.) And I forget sometimes I’m not required to submit to this.  I didn’t ask them the sexual questions, but I did explain, and I’m hoping for the best.

  6. *evil grin*

    I’ll help you with embarrassing the hell out of them with sexual questions, foot odor questions, flatulence questions, bathroom habit inquiries, if you tell me where, and if you want help.

    Just email me (I’m awful at remembering where I commented) and let me know, if you want backup.

  7. Many people seem to assume, for some reason, that someone who has had their life medicalized a lot (either directly or as part of a larger group which assumptions were made about) will be completely comfortable with answering very personal questions and lack a sense of privacy or desire to keep certain things to themselves.

    They don’t seem to consider that that kind of medicalization, pathologizing, over-analysis, projection, etc, could just as easily result in making someone even less comfortable with the idea of telling everything about themselves, if it was always misinterpreted and used against them.

    And, of course, we have the people who *have* revealed a lot of private things and described their own lives in great and often medicalized detail assumed to represent all the rest of us; or they act like we should be okay with talking about the private details of our lives because “that person did it.”

  8. I might think of something assumptive to ask back.

    Doesn’t it ever annoy you to read magazines?

    When you go shopping, how do you prevent this nausea I keep hearing about?

    So do you always make idle chit chat or does it only happen once a week? Are you taking something for it?

    So what exactly are you going through when you just laughed at something and your friend is winking back at you?

  9. I hear there are some good herbal remedies for idle chit chat and I hear that a nice bath in bentonite clay, which you can find in the pet care aisle, is good for stupid personal questions.


  10. How much of our lives do people think they’re entitled to know about?

    I guess that depends on the autistic person itself. People who don’t want to talk shouldn’t talk.

    Dissecting myself became some intense interest. For more than 30 years I didn’t knew what was going on, the only thing I knew was there was ‘something’. I identified myself with aliens or androids from a very young age, when I finally found out that I could be autistic I wanted to know and learn as much as I could.

    But true, I recently questioned myself if it’s a good thing to tell everything, I have no answer to that yet. I guess I have had one rule from the start. Everything I tell applies to me and not necessarily to autism itself, something I always made clear from the beginning.

  11. In my case it’s curiosity. Nothing ventured, nothing gained. If I want to know something, I’ll ask. If the person doesn’t want to answer… well, that’s actually pretty normal and I don’t press. But often I get lucky and get an answer. I learn things about people generally and individually that way.

    It’s not about being entitled to know. Not for me. I know I’m not entitled, and anything anyone chooses to share is a gift and I treat it as such. Also, if people ask me personal questions I try to answer, especially if it involves information that people don’t usually share, like money. (This is an alternative explanation of might be going on with some people when they start sharing personal information with you: they think it’s a trade. They answer your personal questions and you answer their personal questions.)

    I remember being in an elevator with a disabled friend. An old lady kept staring at him and finally blurted out, ‘what’s wrong with you?’ I was horrified at the intrusion, but he just answered, “it’s from birth.” That satisfied her. (When I ask obnoxious personal questions it’s in the course of a conversation where the subject has come up, not walking up to strangers and asking.)

    But this sort of curiosity does not sound like what you’re dealing with in the parent groups. It sounds more persistent. You’ve brought this up in previous posts too. Remember that there are more lurkers than posters on groups, and that you aren’t being harassed by everyone, but by a small and vocal minority. Or perhaps it’s an ongoing thing of questioning by newbies who haven’t learned your limits yet?

    I can guess why they feel entitled to ask: their kids don’t yet have the insight and communication skills to talk about what being them is like, so they ask you what being you is like instead. Their concerned parent status makes them feel entitled to answers. And then they just keep asking without realising that they have started to harass you. Or they feel frustrated by their ignorance, and blame you for being the cause of their ignorance because you’re there.

    All I suggest you do is say something along the lines of “I’ve answered all I care to for now. You’re asking some very personal questions and I don’t talk about these things with anyone but a close friend.” If they keep asking, repeat. “I understand you’re frustrated by your ignorance, but I’ve answered all I care to for now.” After a couple of iterations, ignore. They will look stupid and thoughtless. You can think “What is it about ‘No’ that you don’t understand?” but I suggest you just keep that part to yourself and move on.

    I’m afraid that you’re dealing with a level of voyeuristic assault that I haven’t covered here, though. Something rather worse. Sorry.

  12. The people I’m talking to are for the most part no more hostile than you are (there are exceptions). There’s just a whole lot of them, in a whole lot of different groups, and there’s something going on here that has nothing to do with anything that can be individualized. (These questions, no matter who asks them or who “voluntarily” answers them, are not asked in a power-neutral situation, and I am beginning to realize that unless I say something, then the next autistic person who comes along will be held to the unspoken standard that a “good” autistic person answers these questions and even volunteers the information.)

    I have said something.  With the predictable responses, ranging from bewilderment to defensiveness.  I have no desire for anyone to go and flame anyone.  I’m interested in seeing how this pans out.

  13. Perhaps a question box with anonymous written questions. Then, the questions can either be answered or not, depending on how comfortable you are and no one will feel slighted, because they weren’t personally rejected. You could also have questions for them, in the same format with a different box.

  14. lordalfredhenry, your surreal questions are great!
    In class I like to throw in a little surrealism now and then, just to keep people thinking.

    I had often noticed that some people (oddly, those who are confident they have good social skills) feel they have the right to intrusively analyze those of us who are known not to have good social skills. I’m usually so surprised that I just answer, if it’s possible to articulate an answer.

    I either have unthinking curiosity or maybe I picked up some of this “entitlement to random information”, because I will often ask people things I shouldn’t… but cannot count on the same sort of response.

  15. I have found that the people who truly care about me never ask ‘disability’ questions. My kids never do. I never ask such questions of others I meet who happen to have a difference because I know how it feels. When I was a kid if anyone asked my mother would jump in a start explaining it to them. When I got older I tried to explain to her the trauma it caused me. When these questions are asked they spark horrible memories of hospital abuse, isolation, being stripped naked and handled by gangs of male doctors. I told her one day that it reminded me of the gang rapes I suffered in the hospital, because gang rape is the only phrase that accurately describes what I went through. She tried to understand but I could see she did not really. Nobody gets it unless they have walked in your shoes.

    In another post you talked about staff simulations and how they do not actually simulate what it is like to be abused. I really related to that blog.
    Another tactic is simply staring at the person and not saying anything.

  16. For a long time, my journal was subtitle surreptitious surrealist. ;) I am a big fan of the artwork too. Very cheery landscape types. I used to stim by staring at the patterns on my blankets and imagine cities. tufts of thread were trees etc.

  17. Yes, you need to say something. The thing is, you will have to say something over and over and over again. Because people will *always* be asking you questions. So you need to find something you can say that doesn’t cost you too much effort. Like, ‘I don’t feel like answering that kind of question right now.’ Or, ‘I don’t feel like answering that kind of question any more, see the following posts.’

    The nice thing is, on a forum all you have to do is not answer.

    The bad thing is, there are lots of people on a forum so that even if you successfully educate 80% of the people, the dense 20% remain. And the newbies who just ask.

    I remember when I worked in customer service and how tired I would get of answering the same questions over and over and over again. I kept having to remind myself that even if I had answered this question thousands of times, this particular individual had only asked it once. It wasn’t like I could just answer it properly and get it over with once and for all.
    Your situation is so much worse because you’re fielding personally intrusive questions instead of questions about pricing or whatever. So if you don’t feel up to fielding them on a particular day or week or month or year, just stay away from the fora.

  18. Alison, your solution (the one about going away) assumes that I only want to think about myself and my own protection from these questions. I don’t. I have to say something, in part because otherwise people will think it is okay to do this to the next autistic person who comes along. Simply remaining silent will not convey the idea that there’s something going wrong with the power dynamics that people aren’t seeing.

    I remember meeting a girl who had the same thing I had (not autism, something else, although she may have also been autistic), that causes some particular physical differences. She had no speech and very little voluntary movement. Her mother pushed her head forward and pulled her shirt down in the back so that I could see the hair that was growing further down her neckline and onto her back. I was too stunned (and found that too familiar, from the perspective of the person having their shirt pulled down) to say anything. I have to do my part in stopping that kind of thing (and that’s the level of… what’s the word, objectification? …that is at the heart of a lot of this) much more than I have to do my part in stopping anyone asking me questions. Public dissection, physical or cognitive, is not okay (especially within the power structures everyone’s within), and simply going away from it will not stop people from feeling like they’re entitled to engage in it.

    I’m thinking of finding a little card with weblinks to things that detail the problems of the self-narrating zoo exhibit phenomenon, to use in offline encounters.

  19. The card is a great idea. Maybe it could eventually be put on so ppl could print their own?

    [And also I wanted to apologize for probably having asked some maybe intrusive questions just after first reading this blog.]

  20. Amanda,

    I understand. Really. You aren’t on these parent fora for your own entertainment. I get that.

    I also understand that you’re a human being with your own limitations. By making your limitations explicit, you are making the point that other people have them too. As an adult on an electronic forum, you are free to withdraw in a way that a child or an institutionalised person is not. By making your withdrawal explicit, people can figure out what other people would like to withdraw from but can’t.

    When I say “So if you don’t feel up to fielding them on a particular day or week or month or year, just stay away from the fora,” that’s what I mean. Temporarily. You don’t have to be on there full time exposing yourself to assault full time. Pick your battles. Make your point and then pull back. Your presence is ongoing; people know who you are and will pick up a theme over time. You don’t have to make your point completely every time, or convince everyone in one exchange.

    When you’ve been away long enough for your presence to be missed, say something about what you had to protect yourself from, how upsetting it was to have to protect yourself, and how it reaffirmed your commitment to do what you can on behalf of the kids of the people you need to protect yourself from.

    When I said “Yes, you need to say something,” I meant it. Yes, you do need to say something.

    When I said, “people will *always* be asking you questions. So you need to find something you can say that doesn’t cost you too much effort,” I meant that too. If you are going to be able to be a continued presence on these fora, you need to find a way to respond that doesn’t exhaust you. Trying to find the ultimate answer that will make the questions cease *will* exhaust you, because there is no such ultimate answer.

    Oh, and Amanda? I am aware that I must drive you nuts sometimes, that sometimes you must be just drawing a breath, counting to ten, and composing a rational response. I really appreciate your patience with me. Thank you.

  21. Part of what’s problematic too is that autistic people are still (despite having been around for quite awhile) fairly new as a community, and are still busy with the task of trying to prove we’re human. There’s very little in the way of detailed analysis of this stuff in our community, it’s stuff a lot of us know but that we’re only beginning to figure out how to describe it properly and put it in its context. Even the disability rights community has done more work in that regard than we have, by now.

    I keep going, “Okay, what kind of world is it that this can happen?” and have a very good sense of what’s going on, even the social context it’s happening in, but not so good a sense of how to write about it. And that’s happening several times a day. (Another recent one was reading someone’s theory, presented casually and as an unbiased thing and treated that way by all bystanders, that people whose faces are shaped differently due to so-called ‘MCA/MR syndromes‘ (warning: extreme medical taxonomy behind link) are that way to prevent ‘mating’ and ‘passing on of bad genes’ because said people are ‘unattractive’. The things people say and truly believe to be non-offensive are startling, yet most people could say something like that almost anywhere and not be challenged.)

  22. That’s just horrible. And I didn’t even read the link yet.

    It reminds me of (although it is not the same as) something they told my mother in her special ed training, about FFS: Sometimes teachers will see a kid who just looks different, you can just tell from his face there is something wrong with that kid. And they will try to put that kid into special ed and so they will call the parents in for a meeting, and lo and behold, the kid has inherited from his parents Funny Face Syndrome, because they look the same as him.

  23. Well I do not know but what I do know is that far more of my life is available to far more people than I could ever take it back from simply because I put it on the web. I would say to anyone who is curios to merely type my name into google and they will find out far more than they can handle.

    I have likened the amount of information I have put there to be like standing naked infront of the public.

    However because it is the web I have felt a little remote from it, nonetheless when people I know have read it, that does really feel like they have just walked into the bathroom.

  24. I can’t recall where but there was a time in history when ugly people were killed by a certain king in Asia. When all you have are pretty people mating, they eventually have mutations and strange combinations that are become even uglier over time. Not that it matters that they became uglier as I’m sure those people were also just as human but were about finally learning their lessons. The thing is, what makes a women pretty and a man pretty are totally different, combining those pretty genes, can result in a mix of attractiveness in children. Ugly parents are known to have pretty children too. An ugly mom might make an attractive son and vice versa (according to public perception anyway). It become so ridiculous as to become moot. There are no Eloi paradises of universally pretty young people unless someone does go about making a clone/identical twin based society. Similar to how greenhouses use cuttings and in essence make a fully cloned population of a certain plant. I do wonder how they ever reproduce but plants don’t suffer that issue like we mammals do. In anycase, many are attracted to those of other appearances, less attractive. Society becomes unhealthy when it looks at appearance only for its source of “resiliance”. I don’t think nature works that way. Very often you find very pretty people like Brittany falling for a gas station worker type who is on par with about every other gas station repair service type. Beauty and the Beast is a storybook form of this meme. I don’t believe in a pretty people race essentially. Find it preposterously foolish. Some of the least attractive may provide certain advantages, resiliances and opportunities for variation. Hence you see people like Donald and Ivanna Trump (why did I have to pick such an icky example?) ok. I’m scared I’ll make another disgusting analogy so I hope people can see through the ugliness of my exposition here and grab the points for what they’re worth. ;)

  25. (every use of pretty or ugly is defined in context of the local standards mentioned. ie: Mongolian (Now I think I’m recalling) definitions for pretty or ugly etc. The “new uglies” might even be “pretty” in our definition.

  26. I’m thinking of finding a little card with weblinks to things that detail the problems of the self-narrating zoo exhibit phenomenon, to use in offline encounters.

    I don’t know if this will be helpful, as it doesn’t directly relate to autism, but here’s our example of Respectful Questioning vs. Asking Someone To Be A Self-Narrating Zoo Exhibit (for a general audience– I’m aware there’s a lot of this you know about us already):

    We think of ourselves as being plural. The link there, which is to a collaborative project that we helped work on, explains some of the different things that means to various people, which are not necessarily anything like what the media and pop-psych literature depict it as. Some people experience it in a way that’s closer to the stereotype of it, but ours doesn’t share a lot of similarities with that experience.

    We’ve had several friends approach us with questions like “Is it rude to ask who I’m talking with now?” or “Is it rude to ask people about their individual histories in-system?” Our answer, generally: no, it’s not rude, because they’re friends and we want to help them understand us better, and they ask the questions in the name of wanting to understand us and respect us as individuals, not in the name of wanting to make us freak show exhibits. They aren’t asking their questions from the standpoint of assuming that we operate just like the stereotypical case they saw depicted on TV, or assuming that they are experts on us to start with because they read a book somewhere.

    So, that’s an example of acceptable, respectful questioning. If someone asks a question like “Do people want to be called by their names or the body’s?”, that’s also on a different level than asking us, say, about our family history, or if we think any particular factor made us this way, or how therapists have reacted to it. We would answer some of those questions for some people, but probably, not for a complete stranger, and we wouldn’t answer any question that required detailed answers about our childhood or family, not because we are hiding horrible secrets, but because we consider that private.

    A specific example of questioning that is not okay and not respectful would be the following. I’ll address the exact points at which it was unacceptable.

    We moderate an online community, which is open to everyone, including those who may not identify as being plural in any way themselves. Predictably, this causes a certain amount of “I am fascinated by…” and “how can I help my friend/girlfriend/boyfriend who is…” posts; generally we try to address people’s fears and worries but also to let them know that they’re probably viewing the whole thing through their own assumptions and prejudices. (Or, in the cases of some “my friend is” posts, that they really seem to be dealing with someone who wants an excuse for bad behavior more than anything.)

    Last year we had someone come onto the group and make a post, stating that they were doing a survey for their psychology class. (Wrong move #1: Nobody should be imposed upon and forced to violate their own privacy so that someone can get a good grade. We’re not zoo exhibits, nor are we someone’s science project. Enough of us have already had the experience of being guinea pigs, either for doctors trying to “fix” us or for so-called friends who thought it was interesting or amusing to mess with our heads.) This person also stated that they had chosen this as a paper topic because they had “always been fascinated by DID.” (Wrong move #2: Saying that you are “fascinated” by someone’s difference, especially when you make clear that you see it as always being a disorder, is one of the easiest ways to make someone feel like a self-narrating zoo exhibit. Especially when you make it clear that the main reason for your interest is a morbid fascination with the aspects you see as disordered, as it generally goes hand-in-hand with an attitude of “gee, I’m glad I’m not like them.”)

    This person then proceeded to ask a lot of questions like:
    “What do you think caused your DID? Was there abuse in your childhood?”
    “When were you first diagnosed? Have you received any other diagnoses?”
    “How many alters do you have?”
    “Do you have any alters that scare you or do you wish didn’t exist?”

    This goes wrong on two counts. Bad move #3 is that this person obviously hadn’t read any of the other posts in the community before making theirs– if they had, they would have known that the very narrow, medicalized model she was viewing us through wasn’t the experience of everyone in the group, and that some people find terms like “alters” to be offensive. There were links to various pages right on the information page for this group (a Livejournal community), as well as several statements about how posters here didn’t necessarily find the medical model of plurality to represent them. However, this person somehow managed to miss all of that, or simply didn’t want to bother with reading them; they just basically
    charged right in and began asking questions that assumed we all viewed ourselves in a certain way and agreed with doctors’ ideas about us. If anyone wants us to talk about ourselves in any capacity, they need to start with allowing us to actually do so, instead of using an approach that indicates they believe they already know what our experience has been.

    Bad move #4: It is none of anyone’s business whether we were abused, what diagnoses we have received and when, or how we feel about each other, even if someone managed to phrase it in more respectful language. Most people wouldn’t go up to random strangers in the middle of the street and ask them questions like any of the above. This isn’t a question of whether certain ways of interacting with and addressing us are considered polite or impolite, or whether we would prefer certain ones over others, as in the questions cited earlier– it’s a matter of wanting to know things about us that are personal and that make no difference in interacting with us on a daily or occasional basis, or anything that would help you with a “friend who is…” It’s just voyeuristic. There’s an assumption going on that because someone is being viewed as a patient, through a medicalized lens (whether they view themselves that way or not), they will completely lack a sense of privacy and be willing to narrate their entire history to anyone who comes along. Or, even worse, be grateful to the person who asks because that person is supposedly trying to help them be understood.

    And the thing is, I can name quite a few groups, lists, etc, where this person could have gone and asked these same questions, and got answers from a majority of the posters, describing themselves in the same kind of medicalized language. There are some people who do that on the group we mod, also. Because there are people like that out there, they can be held up to the rest of us as examples of “the good kind” (i.e. the ones who agree with the medicalized view of themselves and seem to lack a desire for personal privacy), and those of us who do want to keep certain things private and find certain kinds of questions objectifying and invasive can be depicted as angry, bitter, and unpleasant, and attacking the people who are just curious or just trying to help.

    Which was essentially what happened in the case cited above: several people on the group got openly annoyed at this person for the tone of her questions and the general intrusive attitude, and she responded by getting extremely upset, talking about how much her feelings had been hurt and how she was being unfairly attacked, and how she felt there was nothing unfair at all about her questions, as she was just using the same terminology that all the books did. She then started insulting some of the more vociferous objectors, and finally deleted all of her posts completely, telling us that we had shocked her with our rudeness and unpleasantness.

  27. Note, the following is not meant to say that being chased and potentially assaulted is the same as being a self-narrating zoo exhibit.

    I have a friend who was chased several blocks by a man clearly intending to hurt her. She pulled out pepper spray and used it. The man started whining (as in, the vocal tone, whining) “HOW could you DO this to me?”

    She learned that this isn’t an uncommon reaction. When a person defends themselves from someone who is clearly intending to hurt them, the person will often turn around and accuse that person of “attacking” them with no provocation.

    If that’s true when the intention to cause harm is there, then it seems to be inevitably and annoyingly true when the intention is not there. A lot of people believe that doing the right thing is the same as being a good person, and doing something wrong is the same as being a bad person, so if you say they did something that harms you, that’s construed as an attack on the entire goodness of their personhood.

    Given that it’s impossible to avoid unintentionally harming people at times, this reaction to pointing out the harm isn’t very logical, but it’s a common one.

    I was discussing this with that same friend today and she commented that power dynamics are a taboo subject. That also contributes to defensiveness. (Having unfair levels of power is seen as the same as being abusive (which is seen as the same as being a “bad person”), despite the fact that everyone does have an unfair level of power over someone.)

    (A lot of this ties back to that stuff I was reading about therapy warping society, too. People can now react to legitimate criticism as an attack on par with physical assault, and become cruel in return, because if they “feel attacked” then that’s all that counts in the situation.)

  28. The last time I had anything to do with psych services which wasn’t telling them I’m having nothing to do with them (the last time, and the first and only useful thing I had from them), I was on a ‘therapeutic work’ project at a farm/ museum, along with a couple of lads from a group home. The staff who was with us started discussing one of the lads’ medications with the stockman (just chat, not safety-related), out of his [the lad’s] hearing, but in front of me. I said something unusually pithy about violation of privacy, and the stockman said, kindly, …
    “But he’s not like you.”

    I didn’t have any words to answer that with, then, more’s the pity. I’m pretty surprised I was able to say anything to start with: even though I technically have the words with which to deflect/ reprimand impertinent/ intrusive questions addressed *to me*, I’ve never yet been able to do it in real time. Probably because weird power dynamics always do silence me.

  29. Yeah… our experience with the “easily offendable” types hasn’t just been limited to “interested singlets.” There are also the types with a huge investment in being therapized, who basically react to any suggestions for problem solving that don’t involve therapists or drugs (or, especially, that suggest that those elements, as they now stand in the person’s life, might be part of the problem) as somehow equating to saying “you have no problems at all.” Because, apparently, a problem is only considered real if you go to a therapist or are prescribed some drug for it…

  30. When people do things that are inappropriate or inconsiderate to me, I am often at a loss for words and in the case of my last roommate, too confused and intimidated to speak up for myself. Ugh, that girl did drugs and crap in our apartment…..

    I hate being walked on by others and I hate even more than I enable this to happen. But even interacting with such a person to tell them I don’t like their behavior……..would be soooo uncomfortable….and if I did it as Ivan, I’d probably get into trouble…..saying “go meet your demise” wouldn’t go over very well.


  31. I’m a nosy bugger. “What’s wrong with your -” is one of the questions that I’m learning not to ask. My nosiness is just generally invasive though – I’ve asked deeply personal questions of people without disabilities. Is it part of an extreme end of gossip magazines? There are dozens of magazines that trace celebs weight ounce by ounce, so there is an idea that anyone who stands out is ‘owned’ by the public. If you look a bit different in any way is there this same sense of ownership?

  32. I have mixed feelings about your post. I too hate to be asked personal questions by strangers, and I am NT. I guess some people just have no sense of what is personal or private. Often these people also enjoy sharing highly personal details about their own lives with strangers, which I find only slightly less rude. Sometimes I think these people feel that everyone should have a personal relationship with everyone, and to not want a personal relationship with any particular person is somehow offensive or mean or “cold”.

    On the other hand, I believe it is helpful to have some common knowledge about private topics, and that can only happen if people are willing to divulge such private info to the public. For instance, sex is a very personal topic, but I think it’s important to have some idea of what sorts of sexual behaviors and thoughts many other people experience, because hearing about other people’s sexuality can help a person to understand their own sexuality. I wouldn’t understand my own sexuality half as well as I do if it were not for the willingness of others — many others — to reveal info about their own sexuality. Certainly I could not actually form a close personal relationship with that many people; in order to have this information most of it has to come from people I *don’t* have a personal relationship with. People who have chosen to make personal info about themselves public, and not always anonymously, either.

    I myself am reasonably glad to share personal info about myself *IF* it is in a rather anonymous setting like the internet, and if the information that I’m being asked for is relevant to the particular context–no asking me about my sex life in a forum about cell phones, for instance; that’s rude. But in a forum about sexuality, it’s fine with me. If I were to go in person to a conference about sexuality, though (it’s rather unlikely I would do this anyway), I would be quite unwilling to answer some of the same questions I would gladly answer on the internet, though I would probably be comfortable answering a bit more than I would if, say, one of my co-workers suddenly got curious and decided to question me about my sex life.

    Of course, I’ve never had the experience of being treated like a lab rat or a curiosity in a zoo; if someone was questioning me with that sort of perception of me behind their questions, I’d find it highly offensive. Focusing on what makes people different from the norm, and being “fascinated” by that, usually involves a certain othering of that person, a dehumanization of them, don’t you think? It can be a way of reducing a person to their most sensational or unusual characteristics.

    But also I admit I *am* fascinated by people’s differences from me, particularly cognitive and emotional differences; I find that humans are so immensely different from each other in thought and emotion that everyone who isn’t me has a certain degree of mystery about them, and most people remain mysteries because I’m usually afraid to ask them about the inner workings of their minds, or because I honestly believe it would be rude to do so. Doesn’t stop me from being curious, though, of course. For instance, I’m insanely curious about the emotional dynamics of other people’s marriages, but that is so personal the only place I get to learn about it is in marriage books, or from this one particular friend who likes to tell me many of the details of her marriage even though I’m pretty sure her husband wouldn’t like her telling people that stuff. Sometimes with people who are very close to me, I feel it is ok to ask personal questions, like my husband, for instance. But sometimes he does get irritated at my questions, I guess because he feels that I am asking him to “justify” or “defend” his thoughts and feelings. I don’t feel as though I am doing that, though; I just want to *understand* his thoughts and feelings. I mean, I *love* examining and “dissecting” my own thoughts and feelings; I don’t equate analyzing them with destroying them or distancing myself from them or criticizing them; quite the opposite. To have someone else examine and analyze my inner being, questioning and delving and learning about me, if it were someone close to me that I trusted, would be rather fun and complimentary. When my husband analyzes me it always makes me feel good, like he’s trying to understand me deeply, and if his analysis is correct, it makes me feel even better, like he *does* understand me. My husband is also NT, btw.

    Anyway, I should also admit that I began reading your blog primarily because I was interested in what it’s like to perceive and think in a very different way than the way I perceive and think. Laurentius-Rex says on his website that he is a divergent thinker; well, I at least try to be a divergent thinker, though my thinking often falls into many common traps. So I try to learn about divergent thinking from others, in hopes of learning to pull myself out of those traps. Also because it’s fun and exciting and interesting to learn about different ways of thinking. I have gotten a bit of that out of your blog, but actually not that much. In fact the vast majority of ideas you write about don’t seem all that different from ideas I might have myself. Sometimes you write something about yourself that I find very different and incomprehensible, but so far I have been afraid to ask you about those things. Like when you talk about not being able to access knowledge on demand. Or what it is like to not always be able to understand verbal speech, but sometimes to be able to. I am wondering if it is rude to ask you about these things? I don’t *feel* as though my interest is dehumanizing, but that doesn’t mean it isn’t. I don’t perceive those questions as very personal, but maybe they are.

    Finally, I want to say that, although I didn’t come here looking for information on disability rights, now that I have been reading I find myself becoming more and more passionate about the subject of injustices committed against disabled people. When I was younger my uncle murdered my cousin (his son) and simultaneously killed himself in a murder-suicide (using car exhaust). My cousin was autistic and I think in his later teens. I had never met these relatives, only seem pictures of them. I recall feeling more sorry for the father than for his child; maybe I even thought my cousin was better off. Because of your blog I have had my eyes opened to a lot of things so far, and started to strip away some of my opinions about disability that I am learning now were wrong, offensive, evil, and dangerous. So, I would just like to end here by saying thank you, Amanda, you have changed me for the better and I hope I can in turn help others as a result, and continue changing and learning because I still have a long way to go.

  33. Amanda-
    I have followed the endless stream of questions on one of the fora in question with a combination of wonderment, anger and disgust. I know exactly what you are saying when you mention the “dithering apologies” and then the continuation of the probing, insensitive and downright rude questions. What is most amazing to me is that you have responded with kindness and dignity throughout–I would have completely lost control at some of the questions posed to you (had it been me on the receiving end).
    One of the ultimates in bad taste came from the “Grandma” who essentially said to you, “Why are you here?” I wanted to cyberslap her, which may be why I can no longer post on that particular forum. Many of us from the forum who have been labelled the “ND crowd” are more than a little pissed off at the treatment you have received at times. There have been a couple of moments that I actually regretted posting a link to If I hadn’t posted the link, you would not have had to go to that forum in the first place. Sorry.

  34. What I’m describing, though, really happens almost everywhere. That’s the problem, it’s not really one set of people, as a whole set of unquestioned attitudes. The reason I haven’t exploded is in part because I’m way too desensitized to stuff like that.

    That’s why I mentioned to someone that, were they to suddenly find themselves immersed in a world where they were treated and viewed as auties are in this one, there are parts of themselves that they take for granted now, that they would probably lose in a hurry.

    But also, when I finally say “I’ve had enough”, that in itself is taken as totally inflammatory, so I didn’t really need to add much to that.

  35. There’s actually a whole set of social protocols that apply to normal people when it comes to talking about delicate or personal areas. The problem is that these rules are rarely applied to people with (percieved) disabilities.

    To use an analogy, if someone was giving a presentation on sex education, would that by itself give you permission to ask about their sex life? How about a woman with big breasts? Somebody making out in public? If someone spoke against abstinence-only education for high school kids, would, “Did you sleep around as a teenager? Have you ever knocked some girl up?” be polite questions? If a female friend confessed to having trouble in bed, would it be reasonable to ask for a complete set of records from her gynecologist?

    No. At least not without several intervening steps to establish trust and comfort. Because respect for a fellow human means understanding that some things are personal, some things are private, and a person shouldn’t have to justify why they don’t want to put the intimate details of their life on display. And agreeing to talk about the subject in a certain context doesn’t mean you’re opening up every element of your life for scrutiny. If sharing is a gift, then don’t go up to a stranger on the street and ask, “Where’s my present?”

  36. Not all questions have to be polite. Some situations give you permission to risk asking questions that might not be polite.

    “if someone was giving a presentation on sex education, would that by itself give you permission to ask about their sex life?”

    Yes. But they don’t have to answer. They can model a polite refusal to answer that will in fact be very useful to many of the young people in the class who may be subject to strangers walking up to them and asking about their sex lives. (This *does* happen. Especially to young women who have been taught to be polite but haven’t been taught how to tell someone to back off.)

    I’m reminded here of some siamese twins who made (make?) a living doing public presentations and take questions from the audience. Of course, every Q & A session includes a question about their sex lives because people are curious. The answer is very simple: “That’s personal.”

    “How about a woman with big breasts?”

    No. And there’s no reason to ask an impolite question in this situation.

    “Somebody making out in public?”

    Maybe. If they’re being offensive to too many people and could use a reminder.

    “If someone spoke against abstinence-only education for high school kids, would, “Did you sleep around as a teenager? Have you ever knocked some girl up?” be polite questions?”

    No, that wouldn’t be polite but it would be a good thing to ask anyway.

    Politeness is useful and often kind, but it’s not the only virtue. As my self-defense teacher pointed out once, letting someone know you don’t trust them is very, very impolite – but it could save you from some very nasty outcomes. And as Amanda points out, politeness can be just I’M NICE I’M NICE I’M NICE signals covering up poisonous statements.

  37. I saw this sort of thing happen here:

    Kent Adams writes:

    “Mary Grace, AS, uh, I don’t think so.
    Unless I’m missing something, exactly how were you diagnosed and by whom? From the story, I don’t see how you met the DSM-IV criteria for AS, perhaps ODD, but AS?”

    To which Mary Grace felt compelled to respond and give personal information.


    A different Mary (not Mary Grace) soon after wrote:

    “I have AS, and to me you don’t sound like someone with AS. Impairment in social interaction has to be profound, not simply that you can’t deal with people sometimes. So let me understand, you don’t know who diagnosed you, whether they were qualified or not (I guess this was never a topic of self discovery for you). You wrote “I had a truckload of impairments, but since no specific area is mentioned, I don’t know if they applied.” Exactly what were you referencing when you wrote that, a diagnosis? Where were your impairments mentioned? I can’t diagnose you from the article, thus the question “I’m missing something…..From the story, I don’t see how you met the DSM-IV. I agree, not even a trained psychiatrist (trained specifically in PDD) could diagnose from anything mentioned about you here.”


    Finally Mary Grace realizes what is starting to happen, and she defends herself:

    “I’m in an AS homeroom at school, I’ve been to several psychiatrists, and many, many of my behaviors fit the typical ‘aspie.’ Just because this article doesn’t mention them doesn’t mean they aren’t there. But you know what? I’m not going to put my life on display for you just so you can play judge and jury over whether I ‘really have AS.’ I do have AS, and you can choose to believe or disbelieve it, it doesn’t matter to me, though it is rather insulting that you and this Kent guy think you can say something like that without even having met me.”

    The probing stops, but for some bizarre reason, on the second to last post, Mary Grace’s mother feels compelled to give personal information about Mary Grace, to prove that Mary Grace really is an aspie.

    “When Mary Grace was 9 yrs. old her psychiatrist had her tested by a fellow psychiatrist. Their diagnoses at that time was intellectual giftedness (though uneven cognitive development), a nonverbal learning disability and depression. This combination of diagnoses accounted for a variety of presenting problems including: poor social interactions, difficulty adapting to new situations, inability to read social cues and benefit from feedback, difficulties dealing with cause and effect in relationships, poor social judgment and perception, her tendency toward social isolation, overreliance on language as a defense mechanism and means for gathering information. Around the same time she was tested by the school psychologist, the results were basically the same. The diagnosis evolved into PDD-NOS, most likely Aspergers Syndrome. At around that time her behaviors were so antisocial,that the school system didn’t know what to do with her, she was placed in a totally self-contained elementary school for children with emotional and behavioral problems. Right now she’s studying for a Latin test. Remember, she’s only sixteen years old, a junior in high school.”

    To which I replied at the end:

    “To Mary Grace and her mom

    Thank you both for your comments. I intend to write a piece on what I have taken away from this discussion. You both handled yourself with grace and sophistication. The only thing I would recommend would be this: Don’t succumb to people who try to cast doubt on Mary Grace’s diagnosis. Such probing is insulting and appropriate, showing a definite lack of social skills. Furthermore, it is an obvious attempt to discredit Mary Grace and her opinions. This is the kind of thing that happens to ASD people every time they try to voice an opinion about anything. ‘What do you know, you are so high functioning!’ quickly turns into, ‘You are just a nutjob trying to pass yourself off as an aspie.’ The thing is that someone could write something about another disability, such as deafness or paraplegia, and it would just be assumed that the person was not lying about it. But when it comes to autism, an outspoken autistic/AS person is discredited. What this shows is a lack of understanding about autism and how complex it is. That is why is such an important piece to look at. It flies in the face of all of what people assume to be true about autism. What I’m saying is, while it is certainly your right and your decision whether or not to reveal ‘evidence of diagnosis,’ I would recommend against doing it because you feel bullied by others to do it. That’s because it will embolden those same types of people to keep demanding such evidence from others who are actively writing about their own experiences with autism.

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