Exploiting our stories. Destroying our sense of privacy.


Azusa of Amorpha writes, in Don’t Take Advantage of Our Good Will:

If you want to get to know us just for the sake of getting to know a plural, any plural, we’re not interested (especially if you want to try to exploit us– been there done that). If you want to get to know us as individual persons, then we’ll talk.

If you replace ‘plural’ with ‘autistic’, you have my current view on things.

I have just read, listened to, and watched (yep, all three) some stuff by Dave Hingsburger around the topic of people whose only ‘friends’ are staff, and whose staff don’t bother to think about how isolated people really are whose only ‘friends’ would never be their ‘friends’ if they weren’t paid to be with them. He describes how this is not real friendship, and how staff’s refusal to acknowledge it impedes the development of real friendship.

He talks, in particular, about how horrible it is for the disabled person to suddenly realize that none of their friends are really friends, but only people paid to pretend to be their friends.

The story of a person’s life is supposed to be personal. If that person chooses to reveal it to a lot of people, that happens, but most often a person will choose to reveal it only to a few friends. Real friends, not fake friends.

Many people believe, however, that the story of my life should be public property. The boldest will tell me outright that it is my obligation to provide them as much detail as possible about my life, that anything else is pure selfishness and avoidance of responsibility. Some of the slightly tamer sorts will simply say, “Tell me your story.” Others are more slippery, and will try to ask in roundabout ways that amount to the same thing but are harder to detect, or will badger incessantly but subtly with little hints about what’s wrong with not complying with their wishes. Some will pull the good-autie/bad-autie split, where good auties tell their stories and bad auties are just weird angry twisted bitter creatures who should tell their stories but refuse to. All show a lack of respect for me as a person, even more so than someone demanding to look at my naked body.

I met a woman once who kept insisting that I “tell my story”. I kept explaining to her that I found her insistence exploitative and demeaning. She kept ‘explaining’ to me that “telling my story” was the most powerful thing I could do. All the other things I was doing, stating my opinion, telling only the pieces of my story that I see fit, are somehow not powerful enough, in her eyes. And she had no clue how disempowering it is to have someone insist they know exactly how to ’empower’ you and you damn well better do what they tell you. (Er…)

If I had a nickel for every person who asked, told, or demanded me to write my autobiography, I would have more money than the royalties from the book itself.

This is invasive. This is demeaning. This is exploitative. Not just when it is done to me, but when this insistence is foisted on autistic people in general. I have been treated like my body belongs to other people, and that they could do anything they wanted with any part of it. This “story” thing is worse. It’s saying that our lives belong to other people, and should be taken by coercion, trickery, or force if we’re not willing to give them out freely. If that sounds uglier than you’d imagined, it’s because it is.

However, this ugly thing is often carried out, like many ugly things, in an innocent disguise. People’s belief that our stories belong to them may not be a conscious one, but it’s implicit in asking autistic people routinely for our stories when the same people would rarely ask a non-disabled complete stranger for the same thing. People’s belief that our stories can and should be taken by force might not be a conscious one, but it’s implicit in the numerous ways they try to convince us to “tell our stories” after we’ve made it abundantly clear that we don’t want to.

I don’t know about other people, but my life story is a hell of a lot more private than my genitalia, and I don’t give out my genitalia to everyone willing either.

The people I’m the most worried about, though, aren’t me. They’re lonely autistic people who are new to the “autism community”. People who’ve never had a friend in their lives, or whose friends left a long time ago, who come onto the Internet, or parent support groups.

And what do they find?

They find people hanging on their every word. They are asked really basic, obvious questions about autism. Things any autistic person would know. And they answer correctly. And people go “Oh wow, what amazing wisdom and insight,” because they don’t realize that they’re doing the equivalent of asking “What emotion does smiling generally convey?”

Then people continue: “You should write your autobiography. You should tell your story.” And a whole litany of questions, often intensely personal ones, ensues, leaving autistic people even more confused about what we’re allowed to have privacy about and what we’re not.

These people are not friends. But a lonely autistic person may not realize that, any more than we always realize at first that paid friends will leave when they quit being paid.

So it’s lonely newbies that I worry about the most, in these areas.

Nonetheless, even not being a newbie, it still wears me down. I know many autistic adults who won’t go near groups dominated by parents, because of this kind of pressure. They have learned that if they want to be considered an individual and interesting person in their own right, they need to hang out with people who aren’t looking for an autiebiography on legs. The single most exhausting part about being around large numbers of un-autie-accustomed parents, for me, is the constant questions, the seemingly insatiable thirst for information pointed straight at me. It’s like walking into a mosquito convention, only instead of blood they’re trying to suck up information and advice. It ends up uncomfortable, itchy, and potentially dangerous.

“Auto-vivisection” is what one of my friends calls this procedure. Ripping yourself open and displaying your insides for everyone to see.

For all autistics, the insistence and encouragement that we tell our stories is a real and problematic issue. Some solve it by telling their stories. Some do so prematurely, and will regret it later, after the irreversible act of publication, after their opinions change, after they learn more about themselves, and so on.

So if the first thing out of your mouth, or fingers, when an autistic person tells you something that you happen to find interesting or insightful, is “Tell your story,” find some way to counteract this impulse before it makes it from your brain into words. Don’t try to soften it with “if it’s not too personal,” just don’t say it. The pressure on us in this department is already immense. Don’t contribute to the destruction of our privacy.

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.

23 responses »

  1. I’ve not had a tremendous amount of “tell your story!” pressure — I’ve had some encouragement in that direction, and some have suggested it, but there is no way anyone’s ever going to see a published tell-all autiebiography with my name on it. This isn’t up for negotiation, and if anyone tried to insist on it I would say “absolutely not” and do my best to distance myself from the person putting on such pressure. It’s terrible that the woman you’re describing would persist even AFTER being told that her persuasion attempts were exploitative and demeaning.

    I don’t mind talking about some instances in, or aspects of, my life. I do think that there is a need for autistic people to speak out — even answering the “obvious” questions sometimes — but I don’t think any of us should be forced to reveal anything we’re not comfortable revealing. Part of me would really like to post under my real name, everywhere, in the sense that I am certainly not ashamed of myself, but I do realize also that information equals power in many contexts. The more information I display publicly, the more information people have about me that they could use for who knows what. I don’t plaster my name and very personal details all over everything online for the same reason that I do not write my phone number in the restroom of every gas station I’ve visited: some things are nobody’s business but mine, and personal details should be the private property of the person they relate to. And I can’t predict what the consequences would be of making more details public, so I’m going to err on the side of caution.

    Nevertheless, every time I post something I feel vulnerable. I post, go to sleep, and wake up wondering, “Should I have written that? How is it going to be used?”

    Because I’ve already seen some parents obviously understanding their kids much more accurately due to reading things written by autistic adults, I do keep writing. But I honestly hope nothing I write is somehow contributing to any sort of exploitation.

  2. I want to say something but I don’t know just what. I know that I understand the pressure you’re talking about. How do we decide what of ourselves is public property, really? – This is a question I have to think about as the church I work for is planning their next newsletter, and they want to include an article about me. And while I don’t make a secret of my diagnosis at all, I haven’t actually told anyone there about it. (Why bother when I don’t really require any accommodations that I can’t sort out myself?) – And at what point does my story become someone else’s to tell? – By which I mean, when is it okay to tell a piece of someone else’s story? When their story overlaps with my own? How much of their story is it then okay to tell? – And the questions continue.

    But privacy is privacy is privacy. I am nobody’s property save my own and God’s.

  3. I imagine this is how you felt when the Wikipedia article was written. It’s deleted now, of course.

    Yes, the people who are the most isolated have the most to lose. Especially when they join support groups for the first time. Have they the skills to say no?

    Hingsberger is good as usual for this. It would indeed be horrible to have paid friends and only paid friends. Since when was companionship a commodity?

    If someone chooses to tell you their story, you should respect what they tell you. If they don’t, then don’t press for it.

    Why is that so hard for so many people?

  4. I could say a lot about why we wrote that article– there were many people whose behavior provided us with ‘source material,’ but there was one in particular who kept writing to Astraea and wouldn’t take no for an answer.

    We’ve gotten the ‘angry/twisted/bitter’ accusation thrown at us before over that essay, as well as over Ruka’s writings on why multiples are not superior to singlets (some of the letters were from the multiple community’s equivalent of “I want a cure so everyone else should” autistics, also).

    It strikes me as somewhat bizarre that someone couldn’t grasp why someone might be angry and bitter after being repeatedly exploited and condescended to and dealing with people who view you only in terms of what they can get from you– whether it’s because you make an ‘interesting case study of mental illness,’ because they see you as representing ‘the limitless powers of the human mind,’ because they want to see you switch for them and perform like a trained dog, because they think they can get something from you sexually, etc.

    I have seen a lot of plurals who gave out their life histories online because they felt it was ‘required’– and it was apparently routine procedure in a lot of communities until quite recently. If you didn’t want to talk about it openly, you were told that this was “not healthy” and showed a “lack of trust” in other community members (although you had no way of knowing who they really were, or whether they might be frauds, etc).

    Add to this the fact that many people see multiplicity as being synonymous with tragic child abuse, usually sexual in nature, and it really makes you wonder about the voyeuristic motivations of people who want to hear your life story.

    Nobody— multiple or non, autistic or non– is under any obligation to disclose any of their abuse history (or any other kind of history) to strangers. It is not necessarily ‘more healing’ to talk about it than to keep it to yourself. Nor does unwillingness to talk about it indicate that a person is in denial or is failing to ‘heal’; they may very well be coming to terms with it on a private basis, and demanding that they make the details of that public can screw the process up very badly. If someone voluntarily talks about it and finds that to be helpful for them, I can honor that, but not everyone works the same way in that regard.

  5. I don’t know, but I think you can see both aspects of this in “Autism is a world.” Sue Rubin has paid friends who are leaving her in the documentary and her life is all out there.

    I don’t think I’d want my mom telling people how difficult I was, or not difficult I was on a video documentary to be distributed widely…

    There ought to be 1 million autism spectrum adults in the US. There ought to be a few thousand autism spectrum adults circulating out there on Internet bulletin boards instead of so few. Maybe it would be easier on autistics if there were more of them/us telling tiny permissable bits of their lives, if you know what I mean… now it’s seems like, ….. ‘oooh, a real Martian, must dissect it” Not good for the Martian.

  6. Camille: I noticed that too. Hingsburger has talked a lot about situations where all a person’s ‘friends’ are staff. And how that person then becomes distraught about when staff leave. And then when the person makes friends who are not staff, suddenly they are no longer so upset by staff leaving, because it doesn’t mean their friends are leaving.

    I was particularly disturbed by the line, “Even you would admit it’s time for her to move on.” I’ve never heard anyone told that about a non-staff friend before.

  7. Zilari writes:

    It’s terrible that the woman you’re describing would persist even AFTER being told that her persuasion attempts were exploitative and demeaning.

    I think she was under the mistaken impression that I needed to be ‘encouraged’ because I must be refusing for reasons that weren’t really ‘real’.

    I had also talked to her about the exploitation of self-advocates at a conference we’d both gone to, in which self-advocates were basically brought on stage to make everyone else’s point for them and then it was all the parents and professoinals who got awards and got to sit on reaction panels, and so forth. She couldn’t understand what I was talking about. She seemed to think that ‘stories’ were all self-advocates were good for, and that we didn’t need things like leadership roles in movements about us or anything. (Another parent at the same conference told me flat out that the job of self-advocates was to wait until parents had a use for us because clearly we couldn’t lead our own movement and clearly we only had a voice because we’d been given one.)

    She seemed very much like the sort of person who is unwilling to look at power dynamics at all. She seemed to just believe, about me, that I had a low estimation of myself or something and needed to be ‘encouraged’ to do what she wanted because I was demoralized… or something equally patronizing.

  8. Was the wikipedia article about Amanda deleted? Oh! I must say, if someone wrote an article about me on wikipedia I’d be delighted!

  9. It was deleted because, as I pointed out, I don’t have enough biographical information out there for anyone to put anything up there that isn’t misleading, without a great deal of “original research” (i.e. editing by me for accuracy) which Wikipedia isn’t about.

  10. “You should write a book” doesn’t necessarily imply a duty to tell all.

    Sometimes it’s just a compliment on the quality of your writing.

    That’s all I meant by saying it… I’m sorry about any confusion.

  11. I wasn’t thinking of you. I didn’t know you’d ever told me to write a book, actually, I might not have been looking.

    I was mainly thinking of the very common tendency for non-autistic parents to tell me “You should write a book” simply because I am autistic and they want to “hear my story”.

  12. I think it would be a great contribution if you were to write a
    book – not saying that you have to. A book does not have to be
    about your life story. The same kinds of great insights you
    present here could go in a book; autistics and parents I’m sure
    would be happy to read it.

  13. Oh, believe me, I’ve got plans for several, not that they will necessarily ever come out (I don’t have that kind of focus). But none of them have anything to do with my life story, except perhaps tangentially. Most people are telling me I should write my autobiography.

  14. Political books, frankly, would be much more useful than autobiographies I think. What the movement badly needs is some *theory*.

  15. I think there is a place for autobiographies in the world of autism literature, but I do agree that “political” books, or “theory” would be more useful at this point.

    Educate the public, not with your life story, but with theory and fact about what autism rights is about.

  16. I like what you write, and how you write. I have tried to read as much of your writing as I can find on the Web, not because I want to know all about you, but because I want to know more about the subjects you write about. (Of course, you *are* one of the subjects you write about. Snork!)

  17. As a non-autistic parent of an autistic child, I struggle with this on blogs written by autistic people – what to say, how to say it, how to make sure I’m not offensive. And often – most of the time, actually – I get so paralyzed by it that I end up not commenting on things I’d like to comment on.

    In some ways I feel like the people who just plow in and say SOMETHING are handling it better than I am. When they say something offensive, they just make themselves look like oafs. But by being so afraid of saying the WRONG thing that I say nothing at all, I run the risk of having my silence translate as “your thoughts, your ideas, and your words don’t matter,” or worse, “you do not exist to me.”

    I have similar feelings to what Zilari wrote above, both in my own posts and when I make comments: “Nevertheless, every time I post something I feel vulnerable. I post, go to sleep, and wake up wondering, “Should I have written that? How is it going to be used?” But here I go clicking the “submit” button again.

  18. My own feeling is that when I am a representative of a dominant group *in a setting where I am in the majority* I am very, very careful about what I say. When I am in a minority I feel much freer to take risks and put my foot in my mouth and be an oaf in the hope of learning something, because I feel as though I am less threatening when the non-dominant group outnumbers me significantly. I feel as though the scales are a bit more balanced.

    But I’ve come to recognise that this is not sufficient: that bringing my oafishness to somebody else’s table may have the effect of making them feel hounded, unsafe no matter where they go.

    This poses a bit of a quandrary, but I have found that demonstrating an ability to listen well and learn quickly gets me much forgiveness. (For which I am extremely grateful.) And to do that I need to really care about the people I’m listening to and value their point of view. Which is the whole point, isn’t it?

  19. As it stands, I’m much more interested right now in the idea of writing a novel than I am in writing my autobiography. If I write a novel, in all likelihood, it will not be about either multiplicity or autism, nor will it be semi-autobiographical. I’m sure this would be received with confusion by people who think that belonging to any sort of ‘minority’ group means you are only interested in, or only capable of, writing about people who are exactly like you.

    Which is all the more of a compelling reason not to go around publicizing my life history, because if I did, anything else I wrote would be bound to be ‘analyzed’ in light of that. The fact that I was writing it at all might be treated as remarkable and miraculous, as has happened to plenty of other multiples and autistics who wrote their own books– “how amazing it is that someone with this bizarre mental condition could get it together enough to write a book.” They might treat the fact of my writing as assuming prominence over anything I actually had to say, and my work would not be judged on its own merits as I would prefer it to be.

  20. “If you didn’t want to talk about it openly, you were told that this was “not healthy” and showed a “lack of trust” in other community members”
    But in fact trust issues can result in telling complete strangers your life story. They key with trauma-related stuff (and trust issues are trauma-related) is *extremes*. Typically this shows up one of three ways with each thing. Being at one extreme, the other extreme, or bouncing between the two. For example in terms of memory, there’s inability to stop thinking about it, not even knowing it happened, or the more common scenario that so few people understand, where you remember some things well and other things not. For example, I have body memories and occasionally vivid but fragmented visual memories but otherwise have little memory of being sexually abused. (And if any false memory syndrome types read this – one of my abusers confessed. It is possible for memories of corroborated abuse to be repressed.)

  21. Oh, and I forgot to mention – I have no problem with telling my story. The only problem is concern about if it will be used to support things I don’t support, and my solution is to state clearly why I don’t support those things. I’m writing an autobiography. (And a disability rights book that isn’t an autobiography.)
    I don’t understand it myself, but I know some people don’t want to tell their life story to everyone. But what’s wrong with asking something like “Would you be willing to tell me X?” It’s possible to say no. Not taking no for an answer is a problem, but I wouldn’t like it if someone was wondering something about my that I’m willing to tell them about but they never ask. I wouldn’t answer some questions. But for example if there’s a parent (and many reason this way) is thinking “you’re older than my child, maybe you can tell me things about your experience so I can better parent my child” for example if their child is heading into middle school and they’d like to know my experience of middle school, I’m glad to tell them, with the hope that child will be spared some of the awful things I experienced.

  22. Sorry to revive a “dead” conversation. Etinna’s comment helps. I believe many of us parents are just looking for a way to help our kids. Not help them be more “NT” or help them be “normal” but just to help them be happy and strong. It IS a lot of pressure. But it’s the future generation and the future of the autism pride movement, specifically, at stake, when we talk about our children.

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