Daily Archives: April 26, 2006

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.


The “right” to freedom from disagreement.


While I was approving comments today (and marking half the comments I got as spam, ugh) I came across a comment on one of my older entries, Suicide and Autism Severity. The commenter said that the person I was disagreeing with in that entry has done a lot for our community, and that the amount of people who see that person as an “easy target” therefore demonstrates an ingrained fear of success and were the “angrier” autistics.

I’ve already covered the way people mischaracterize me as “angry” as if it’s a personality trait, in a post called On the “angry” nature of my writing. But I’m not sure I’ve ever covered this interesting phenomenon whereby your contributions (real or imaginary) to a community are supposed to make you immune to disagreement.

I’m going to quote from Jane Meyerding’s excellent “snippet” called Discourse (I encourage people to follow that link and read the whole thing, it’s a really important statement):

I see this as part of the “psychologizing” of the culture. In the U.S., it used to be accepted as part of the democractic process — a necessary part of that process — for people to have and to discuss a variety of opinions/perspectives on any given topic. But now, psychology has replaced civil/political culture to such an extent that the primary objective is “do not hurt anybody’s feelings.” And if you express an opinion, you are seen as “putting down” (and thereby hurting the feelings of) anybody who does not agree with you.

The assumption seems to be that people are so fragile (in psychic terms) that they will be damaged by having their feelings hurt — and that their feelings will be hurt by contact with anything that does not “validate” them in every way.

I’ve never found anyone I totally agree with, nor anyone I totally disagree with. Given the complexity of human beings, this makes sense. To me, most people occupy some continuum of agreement and disagreement on various specific issues. Moreover, if I disagree with you on one thing, and I also disagree with you on another thing, that does not mean that the two points of disagreement are connected to each other.

I have, however, been told, in reference to many different people, “Please stop saying these things. [Insert name here] has contributed so much to our community. I don’t think it’s fair of you to disagree with things they have written or done. [Although “disagree with things they have written or done” is often replaced by “attack them”, as if disagreement is attack.] Look how much they have contributed.”

I don’t get this. Everyone makes mistakes. Everyone. If people are not able to voice disagreement, whether correct or incorrect, then how on earth are the mistakes going to get questioned? If all disagreement suddenly becomes an attack on the person, and people who have “contributed a lot” (in some people’s minds, since the value of various contributions can be perceived very differently depending on who is involved) are conferred some kind of immunity to disagreement, then what exactly is going to happen?

Several years ago, I wrote an article about autism “experts”. The article stimulated debate in an autism forum. Some people agreed with it, and some people didn’t. Moreover, some people’s points of “agreement” seemed more valid than others, as well as some people’s points of “disagreement”. But I was glad that it was getting people to talk about those things. That was my goal as a writer at the time, and I considered it a compliment that they were taking me seriously enough to talk about these things in a forum where I only lurked, not posted.

Then, it happened. Someone invoked, not my “contributions” to the community, but my “fragility”. They said I’d put up with enough from the NT world and that I didn’t need people “attacking” me like this.

That was the first response I took offense to. They were effectively saying that I should not be taken seriously as a writer. That it was enough that I wrote, and people should either agree with me or shut up. That seemed very wrong, and still does.

M.J. Carley said that most “low functioning” autistics are not self-aware enough to consider suicide. I believe him to be wrong. I stated my reasons why. This is not considering him, the person, an easy target.

The only way in which this could be conceivably argued is something like, “I was on the GRASP website looking to see if a particular copyrighted article from autistics.org had been removed yet. It hadn’t. Then in the same section I saw these new articles, so I decided to read them, and then I came across this statement, and responded to it.” And I have to say, that’s really stretching things. The fact that I have ongoing copyright problems with GRASP and the fact that I disagreed with a statement are not related except in the sense of how I first came by the statement. If I’d come by the same statement, made by any other person, I would have responded the exact same way.

(By the way, if any GRASP people are reading this, seriously, linking to articles is fine, copying them wholesale without permission is not fine, and this goes for anybody’s articles, not just mine — I’m talking about in particular the “Theory of Mind” article from autistics.org. One of the authors is working under a pseudonym, and two including that one have not been involved much (one not at all) in the autistic community during the time when you put up the site. You need permission from all the authors to copy it. Also, last time I checked my own articles that you’d copied are not linked, but are still available on the site and hence through search engines. I’m fine, as I said, with you linking to those articles on autistics.org, but I would prefer if you did not keep copies on your website, even without linking.)

I can see how it’s easy to see all disagreement with a person’s views, as “targeting” that person, and as somehow related. It’s just not true, though. I once ran into someone who viewed disagreement, or even questions that might indicate disagreement, as hostility. I tried to find out why, and she said that she’d experienced a lot of hostility that week, therefore my disagreement and my questions (which were mainly on the order of “Uh… what did I do wrong??”) were also hostility.

This attitude when held by or about someone with power seemed, and still seems, dangerous to me. When Larry Arnold disagrees with Michelle Dawson on whether there’s a difference between autism and Asperger’s, it’s simply not the same thing as when Lenny Schafer (who agrees with Michelle Dawson that there’s a difference, but disagrees on what the difference is) launches an all-out smear campaign on Michelle Dawson that has nothing to do with her views or actions and everything to do with proving she’s not really autistic.

It would be wrong for me to tell Larry, “Look at all Michelle has done for our community. I think you and Lenny Schafer are just angry people looking for an easy target.”

And it’s wrong (both inaccurate and questionably ethical) to tell me the same for disagreeing on a point of opinion with Carley. Nobody has a right to freedom from disagreement.