Whose Planet Is It Anyway?

Friday, March 10, 2006

On Authenticity

Oprah Winfrey caught a lot of flak recently for promoting a memoir that was discovered to be a fraud. The author wrote some very intense scenes describing his experiences as a drug addict and alcoholic, but many of these experiences turned out to be fictional. When Oprah became aware of the fraud, her first reaction was to argue that the content of the book was more important than its authenticity or lack thereof. She changed her position after she found herself criticized by journalists everywhere.

Similar hoaxes have been perpetrated by people who falsely claimed to belong to various minority groups. Ballastexistenz recently posted
this link to an article about a writer who misrepresented himself as Native American and wrote about alcoholism on the reservation. There was also a scandal of this sort in Australia a while ago, when a middle-aged white man who had been unsuccessful in trying to get books published under his own name pretended to be a young Aboriginal woman so that he could sell a book that dealt with racial issues.

These writers had defenders who, like Oprah, said that it didn't matter who really wrote the books and that they had merit, regardless of authorship, because they raised the readers' awareness of serious social issues.

It's easy enough to proclaim that writers should be truthful in all things, but in fact, none of us can meet a standard of absolute truth. We shade our words and filter our experiences to make our points most effectively. We choose what to talk about and (as an inevitable corollary) what not to talk about. Total authenticity in writing, without these filters, would amount to little more than stream-of-consciousness babble. A line must be drawn somewhere. What are our ethics? What price authenticity?

I have just learned that a person associated with the autistic civil rights movement, a person whom I respected as a strong voice for justice, is a fraud. When xe became involved with autistic advocacy, xe claimed to have been placed in a special-needs school after a childhood diagnosis and to have been unable to find work as an adult, except for part-time unskilled jobs, because of discrimination. This was all a lie. In fact, xe is a successful, college-educated author and journalist who presumably was collecting material for a book.

Certain other activists who know xyr true identity have decided to keep the matter hushed up. We don't need a scandal, their reasoning goes, and this person's book may turn out to be helpful to the cause.

I have a confession to make: I haven't raised my voice to argue otherwise. In a world where Dr. Mengele types are chemically castrating autistic children for fun and profit, I have a hard time scraping up any moral outrage about the behavior of a journalist who is "on our side," no matter how dishonest. Maybe this is indeed a situation where the truth of the message is more important than the truth about the author. Or maybe I'm just rationalizing.

I came very close to not writing this post at all—to letting it fall through the filter. Who am I to talk about autistic pride and authenticity in representing one's experiences, anyway? I'm certainly not the arbiter of truth in journalism. I'm just another coward hiding behind a net nickname on Blogspot. As Elton John said in Goodbye Yellow Brick Road, "there's plenty like me to be found."

This has left a very sour taste in my mouth.

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26 Comments:

  • If that's true, it scares me.

    I say "If that's true," not as an insult to you, but because I've heard rumors like this about, for instance, Donna Williams, and they were false and maliciously generated (but passed on by people who meant well). And nearly every famous autistic person, and some not so famous, has had things like this said about them.

    But I don't doubt that it's possible. People pretend to be people they're not all the time, it doesn't shock me that some would pretend to be autistic.

    But it bothers me nonetheless. I like knowing that people I'm interacting with are the real thing.

    By Blogger ballastexistenz, at 12:34 PM  

  • I have reason to believe it's true from my own observation of the person's recent behavior, and I got the details from someone who is in a position to know.

    No, it's not anyone famous, and there probably wouldn't be any serious harm to the autistic advocacy movement even if the story did get circulated widely, but all the blurring of ethical lines that's been going on in the interest of the cause (and I'll admit I've crossed a few lines myself) is starting to bother me.

    Maybe it's justifiable by the same sort of reasoning as collateral damage in a war, but that doesn't make it any more palatable.

    By Blogger abfh, at 1:41 PM  

  • Personally, if I knew who it was, I'd expose the person.

    If someone wants to be an ally then that's great, but there are more honest ways of learning about the autistic community (and if there aren't, they could probably be arranged if it's for a good cause).

    Even though I know that this sort of deceitful behaviour is sometimes acceptable in the NT world, I don't see how that person could ever regain xyr credibility as far as I'm concerned. I would be unable to trust any claim made by the resulting work.

    By Blogger elmindreda, at 2:24 PM  

  • I think it would be better to expose the person. There's no reason to go into "coverup" mode. It just makes things worse.

    I don't know who it is, but I think the person should be "exposed" and given a chance to defend him or herself.

    I just want to point out that I don't think it's Jim Sinclair and xe is usually the person described with "xe, xyr, xem" because xe is "intersexed" or however xe describes xemself.

    By Anonymous Camille, at 2:31 PM  

  • I was using "xe" to avoid identifying the person's gender. It's not Jim Sinclair.

    From what I've been told, the person admitted the hoax after being confronted and will no longer be involved in certain advocacy efforts, so there is no need to expose an ongoing fraud or to allow an opportunity for self-defense.

    By Blogger abfh, at 3:00 PM  

  • Interesting how ballastexistenz put it. I've known so many people angry at Donna Williams who just brush her off "she's not autistic."

    If this person were to be exposed, then I think we can at least try to uncover who is "real" and who is not. Or else, it leaves people like Donna unfairly judged.

    As a parent, I hope when I seek advice and turn to people who say they are autistic, are. I glean from their experiences to guide me in my relationship with Adam. A person falsly claiming to be autistic, good intentions or not, is simply not being fair.

    Artistic license still has rules and boundaries.

    By Blogger Estee Klar-Wolfond, at 3:28 PM  

  • Hi,

    Thanks for clarifying that it's not Jim Sinclair.

    I think that if the person were exposed it would be good so that all the person's old comments wouldn't be quoted as having value. I don't know if this person was active on the internet, but if he or she was then his or her words might get quoted in the future, like Marty Murphy's words are.

    Also, one hopes that this person has given up on the idea of writing about autism in the future, but if he or she writes something, everyone should know that this person has no credibility as a journalist or a human becaus he or she has a considerable history as a liar.

    I can only "trade on" my credibility as someone who always tells the truth about autism and who I am. I don't have a degree, I won't put a copy of my Dr.'s dx on the Internet because it would start a dangerous precedent, and not that many people know me personally... Michelle Dawson, Anne and Kathleen Seidel have met me, Kathleen has met my child and my dog and sat in my apartment for a few hours. We've talked on the phone a tiny bit... but mostly I count on people believing that I wouldn't lie to them, not on Yahoo! groups and not on my blog.

    I think there are enough "autistic" fingerprints all over my writing style and my life that would be very hard for a normal person to fake.

    I wonder how the fake person actually did in his or her "act."

    By Anonymous Camille, at 4:29 PM  

  • I've just learnt about this from ballastexistenz's site.

    If its true then I'm disappointed whomever it is. I think the biggest thing the autistic rights movement has in its makeup of predominantely autistic members is authenticity - only someone with the double standards of a Schafer could deny that autistics are best suited to represent other autistics in terms of a group identity and if someone is posing then I find that authenticity must be affected negatively. The intention may be to do good but I don't believe any good can come from dishonesty.

    By Blogger Kev, at 5:18 PM  

  • I'm with elmindreda on the idea that there are other ways to be allies.

    If this person came clean, publicly, admitted they'd done something wrong and deceptive, but continued to be an ally to us as who they really are, I think that would be the best possible outcome.

    By Blogger ballastexistenz, at 6:31 PM  

  • Re what Camille said, I've met Kathleen Seidel, Anne Bevington, Laura Tisoncik, Jim Sinclair, Joel Smith, a whole lot of auties at that Berkeley book-signing with Dawn Prince-Hughes, a whole lot of auties at Autreat (presented at Autreat), etc.

    I think it's been pretty well established, in my case as well, that I'm an autie in ways that would be totally impossible for a non-autie to fake 24/7 even if they wanted to.

    By Blogger ballastexistenz, at 6:35 PM  

  • And in reply to estee (not that I'm trying to take over the comment board or anything, I'm just replying to other people's comments) I've seen that too and it really makes me mad.

    I have my disagreements with her, to put it mildly (and also my large areas of agreement with her), but I would never dream of saying or implying that she's not autistic, just to score points or something. It enrages me that people stoop that low, rather than just saying they don't like some or all of what she's got to say.

    "You're not autistic" is a lazy way out of having to actually justify what you say.

    By Blogger ballastexistenz, at 6:46 PM  

  • I couldn't tell from the post whether person is lying about being autistic, or lying about his or her life experiences. I don't know who the person is. In fact, I'm still scratching my head trying to figure out whether I know abfh. :-)

    Anyway it's completely unnecessary to lie and pretend to be autistic. The move toward greater acceptance has to have non-autistic allies.

    I'm unabashedly NT and have never encountered a problem learning about the autistic community.

    The story worries me, unless maybe this journalist was planning to go undercover as a consumer of autism services and then write an expose. Nah, probably not.

    By Blogger Anne, at 4:48 PM  

  • Been where you're at - with Marty Murphy & Brad Rand, not a fun place.

    Not so fun being the painted with the wide brush you paint this blog with either - I don't think I "deserve" it.

    By Blogger jypsy, at 5:07 AM  

  • jypsy, I am not sure what you mean by your comment. I don't think I have "painted" you with any kind of brush (or even mentioned you at all). If you were offended by something I wrote, it was not directed at you.

    I respect your advocacy efforts, and I agree that you don't deserve my gripes!

    By Blogger abfh, at 8:14 AM  

  • The blog's title is a response to aspies who use terms such as "aliens" and "from another planet" to describe themselves. That is a defeatist attitude and is harmful to civil rights efforts to combat prejudice.

    and from This Is My Damn Planet, Too:
    "So, if you're planning to create your own personal website, make it count for the cause. Write about the harm done to you or to your children by unnecessary drugs or unsuitable schools or bullying. Write about discrimination in the workplace. Write about social stigma and prejudice. But please don't build another of those godawful sites describing yourself as a clueless wrong-planet alien."

    So as the 10 year webmaster of "Ooops...Wrong Planet! Syndrome", who's website spoke not to the "harm done to you or to your children by unnecessary drugs or unsuitable schools or bullying. Write about discrimination in the workplace. Write about social stigma and prejudice." but about the benefits of suitable schooling, the bullying that didn't happen and the acceptance in our community, combined with the fact I most certainly do not have a "defeatist attitude" and fight my damndest for "civil rights efforts to combat prejudice" I can't help but feel I am being unfairly painted with your very wide brush.

    However, you clearly have a hangup with my word choice. You obviously misinterpret it's connotation in my world. Still, my word choice makes me your "enemy", someone who, in your eyes, is harmful to civil rights efforts and to autistics.

    By Blogger jypsy, at 7:18 AM  

  • Okay, I see what's bothering you now, jypsy, but your site wasn't what I had in mind when I complained about "wrong planet" becoming a harmful cliche. I was referring to much more recent websites.

    I am sure that when you built your website 10 years ago, you didn't expect "wrong planet" to become a commonplace term used to describe the lives of autistic people, and you weren't suggesting that it ought to be.

    But now it has become trendy (at least in some circles) for aspies/autistics to illustrate their personal websites with pictures of sad-looking aliens, to write in self-pitying terms about their "symptoms," and to declare that they will never understand "normal" people and will never fit into human society.

    That sort of attitude is self-defeating and reinforces the popular view of autistics as having a pitiful and subhuman existence "in their own world" and therefore not having much use for civil rights, etc.

    Again, I don't blame you for the popularity of "wrong planet" imagery, which you could not have foreseen when you built your site. I want to emphasize that I do not look upon you as an enemy. Although your word choice had some unfortunate results, it would not be fair to blame you for that.

    By Blogger abfh, at 11:01 AM  

  • How can I help but feel attacked by your blog? You don't in any way distinguish me from those who are your targets. In many circles "Wrong Planet" is directly associated with me. Chances are, since I'm not one of those "much more recent website" more people in the autism community associate "wrong planet" with me than with them.

    I understand that we are not enemies, but that's not what your words say. You lump me in, just by my word choice, with a bunch of people, and proceed to build a blog in response to "us". You then characterize my attitude and efforts.

    While I understand what you *mean*, it's really hard for me to get past what you *say*. Wouldn't you feel the same way in my shoes?

    By Blogger jypsy, at 11:38 AM  

  • Yes, you're probably right that I would be upset in your place.

    I wasn't trying to upset you, and I apologize.

    I'll edit my description of the blog to add a disclaimer that I am not referring to you.

    By Blogger abfh, at 11:44 AM  

  • Thanx

    It's not that I'm "upset", it's just really weird. I mean, if you ever want to get trash talk WrongPlanet.net I'm sure I could join right in and spice things up with my own little dealings with them....

    I know from what you've written you are not my enemy and what you wrote was not directed at me -- it's just still really hard to read though. You're talking about my baby there and saying stuff about it that just ain't so. I guess I'm just too literal to get past that.

    When I have time, I'll try to explain just what "Wrong Planet" meant to us and how it furthered our fight for human rights, acceptance, understanding, etc etc.

    thanx again for your understanding and for not taking offence, I assure you I didn't.

    By Blogger jypsy, at 12:01 PM  

  • Whew! Glad to see that's cleared up, because jypsy and abfh are two of my favorite advocates.

    Anne said:
    In fact, I'm still scratching my head trying to figure out whether I know abfh. :-)

    Yeah, me too. I can't say I recognize her "voice" from any of my Lists. I've lost sleep wondering.

    By Anonymous Clay, at 5:47 PM  

  • I have a hunch Clay....

    The reason I raised this here, rather than ask her to email me privately to discuss it (which I pondered for some time) was to protect that anonymity. I was afraid that by asking her to contact me she may need to give me more info about herself (email address etc) than she really wanted to do.

    Assuming of course she is a she........ ;)

    By Blogger jypsy, at 7:08 PM  

  • Hi Clay, have you really lost sleep wondering who I am? I didn't know my identity was getting to be that much of a drama!

    Some people who know me say that my writing style is extremely recognizable, but I guess it depends a lot on the context, like everything else.

    jypsy -- I have a hotmail address, autisticbfh (at) hotmail.com, which I use only for replying to feedback about this site. If you or anyone else want to write to me, feel free.

    By Blogger abfh, at 7:32 PM  

  • abfh wrote:

    Hi Clay, have you really lost sleep wondering who I am? I didn't know my identity was getting to be that much of a drama!

    Yes, really. Ever since Camille posted your website address on the Treehouse, and I found - here's this mysterious person, who knows everybody and all the issues, has really "hit the ground running", has a great "take no BS attitude", and *never misspells* a word, has *got* to get my attention! ;-) I've been around awhile, and I still don't know if I've ever read anything from you on any of the Lists I'm on. I won't ask who you are, but you could at least tell me if I've read you before. Please?

    Sleepless in Rochester

    By Anonymous Clay, at 3:53 PM  

  • I used to be more involved with lists/forums, Clay, but I decided that I was wasting my time and energy by arguing with individual aspies who lacked self-respect. So I created my own site instead. I chose the abfh name to show more attitude than my original net nickname.

    And yes, there have been some conversations where we both posted, but you probably haven't read very much of my writing on other sites.

    By Blogger abfh, at 9:44 AM  

  • I'm reading this & pulling stuff out that strikes a chord. One is the extraterrestrial vocab. I produced a book that had such a title, favored by a lot of contributors, but it was about that Mars Venus book, not about the popular perversion of Grandin's title. (It's anthropologist ON Mars, not FROM.) At any rate my use wouldn't have been evident to readers who'd have unconsciously glommed it onto the patronizing uses so I regret using it when the necessary distinctions would not have been made. I guess I'm seeing jypsy's title as a reference to a musical composition of the same title (right, jypsy?), again too subtle? (That's not the right word but can't think of the right one.) I'm thinking there should be a moritorium on extraterrestrial analogies if only because they are being lost on readers. But what I really connect with in this discussion is my persistent shame about one feature of "my" book. I included a piece by the ntbfh. I look forward to rereleasing the book w/o her contribution but I gave in to some pressure to not be mean to her by excluding her. S@!&t, I'm a slow learner! Dang! I hate this! I sat with this person, who claimed to be "on the cusp" between NT & AC and asked her over and over to name just one feature of her function that was AC and she couldn't mention a single one. The best she could do was say she was a nerd and nobody liked her. Her mother was AC and Dad NT so that was her claim to cuspidity. But an AC friend revealed to me more of this woman's narcissistic behavior and I came to see that she wanted power/influence in the autistic community while hosting a relentlessly anti-autistic web site for abused adult children of Asperger parents. Until I immersed myself in the site I didn't have the full impact of her militancy against...me! I mean she would have if she could have made sure I wouldn't have got custody of my kids if my spouse and I were to have divorced! I will do a new version of this book as soon as I've moved far enough away from three years of workplace brutality. At this state I'm too frightened to act. But I'm starting to find people offering concrete functional/tactical helps so maybe I'll have rectified this bad mistake some day soon.

    By Blogger j, at 2:28 AM  

  • What I would like to know is who many of you have doctors (more than one) who have diagnosed you as autistic? I know Marty Murphy has. I don't know about Brad Rand. Donna Williams has. Jypsy, have you or are you simply "self diagnosed" so many others? How about you ballastexistenz? Have you been formally diagnosed? These blogs and pages that want to cut people down are annoying. If you guys would spend your time trying to unite the autistic community you would be better off.

    By Blogger Keith, at 5:36 PM  

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