Some quick corrections and clarifications.

Standard

There is not a lot I needed to correct or clarify, but there is a little bit.

In the Wired article, I’m described as cueing up a video. It can be inferred that it is a video I made, but it’s not, it is a video made by ChristSchool, and it is this one:

Then there was a quote attributed to me at one point, that actually belongs to D.J. Savarese. I was telling the reporter a story about how when Savarese was interviewed on CNN, he was asked whether he thought autism ought to be treated, and he said, “Yes, treated with respect.” That quote is attributed to me in the article, when really I was telling a story about what someone else said, and did say clearly that it was D.J. Savarese who said it.

I am guessing that both of these things have to do with the fact that the reporter’s tape recorder broke and did not record the interview as planned, so he was going off of notes, which probably involved writing down the words but assuming the tape recorder would pick up the exact names of the sources or something.

Another thing slightly off is the amount of time it said I spent on the Internet. I was emailed and asked about that, and I said sometimes I spend a lot of time, and sometimes I spend very little to no time. I am guessing that the “scary amount of time” part fits in better with geek culture. ;-)

But I do spend a fair amount of time offline, in reality: I have obligations in the rest of the world too, given that I have a neighbor I go over and assist with a time-consuming medical device on a near-nightly basis, a volunteer job involving cats (who don’t have net access) that I sometimes do often and sometimes barely at all depending on what I’m capable of, a cat and dog living with me who want to spend time with me, and a fair degree of exhaustion just getting through everyday stuff (I can get online from bed, but don’t always do so).

None of this is to say I don’t like the article, I just don’t want people to mistakenly attribute other people’s quotations and work to me in the process.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. 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 a couple years ago 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.

30 responses »

  1. Well having at last been directed to a readable version of the story it is about typical for journalism which is never concerned with facts so much as a good story.

    There’s a lot in the tone of the article I don’t like, it’s loading the facts with emotive words isn’t it.

    Many people spend a “scary” amount of time fixing there vintage car, or watching the heavens, or (substitute whatever hobby or pastime that is dominant)

  2. It’s a wonderful article. I totally skipped the science part (science makes me go to sleep), but the rest sounded excellent. I’m really encouraged by the progress that’s being made in the field.

  3. Lenora: I have no idea if he’s made any public statements or not. I don’t have any particular opinion over whether he is or not (I don’t tend to do diagnosing or undiagnosing of celebrities), but the fact that a very successful and high-status person is allowed to rock whereas other people are pathologized for rocking is significant whether or not he’s autistic (or, for that matter, whether everyone else who is pathologized for rocking is autistic).

  4. It doesn’t matter a damn whether Bill Gates is autistic or not, rocking is not enough for a diagnosis and I guess he is rich enough not to be bothered either way.

    Richard Branson on the other hand is to be admired, because he is open about being dyslexic,

    David Bellamy, has self diagnosed (in his autobiography) as Asperger’s and he is a respected scientist.

    We don’t need Bill Gates.

  5. I read an article about Bellamy a couple of years ago and thought “he’s got to be one of us”. I think it was about his struggles with depression or something, but there were just certain… tell-tale phrases in there. And i always liked him when i was a kid, and i think got mockingly called “a little Bellamy” by someone or other.

    Not sure myself how useful diagnosing celebrities (living or dead) is, but i think it does serve one useful purpose of showing how, in some recent-ish periods and settings, traits or behaviours which are currently pathologised were tolerated or even celebrated. There are some *really* odd choices of famous people who get attributed as “probable Aspies” in some places, tho – I mean, Jane Austen (possibly the most uber-NT fiction author ever)?

    The Wired article seemed… better than *most* media coverage of autism issues (which isn’t necessarily saying much). I was a bit amused by its apparent perseveration on the exact computer software Amanda uses, until i realised it was a computer magazine ;)

  6. Something niggles me about that article, moreso in the latter part about the work of Michelle Dawson. The focus on intelligence, and the fact that autistics aren’t as stupid as they were thought to be, seems to carry with it the implication that intelligence is an especially valuable quality in someone. It’s the notion that the reason not to cure autism is because of their intelligence so they aren’t defective, and with that is the corollary that people who aren’t intelligent, are defective and should be cured. It wouldn’t really matter what strength they singled out, it’s the general idea of valuing someone because of their abilities. I remember reading another article in Wired about an amputee who was considered worthy because he had an artifical limb that enabled him to run faster than someone with two legs. So what? Is that what matters in life? Wired magazine does focus on what is cool, clever, high-tech, inspirational, but I have an uneasy feeling about this which I can’t quite define.

    I feel it’s highly significant that they didn’t mention Amanda’s more mundane offline activities and I’m glad she pointed that out. They want to portray her special abilities because that’s what makes her noteworthy (they also focus on the role of technology but I don’t mind that). It would have been so much better if they had given equal weight to stuff like being a good friend and neighbour. I guess they wanted a good story and so maybe I should be glad they write about disability at all and in a positive way.

  7. laurentius-rex: The statement that she is online a “scary” amount of time is probably not meant as a slight against Amanda; after all, most of Wired’s readership probably spends between 4 and 12 hours online a day. ;)

  8. Yeah, I notice that I talk about a whole variety of things, and then people find a story that makes sense to them, pull that out of it, and that’s all they seem to notice (let alone write about). That my message in this regard is that people are people, rather than that people are not-THAT-kind-of-people, seems to frequently get lost. This selecting-out process seems to happen with most people I talk to though, not just writers or journalists. It also seems like I get singled out to stand for some sort of generic sort-of-person that has little relevance to my actual life. It’s like I’m a generic stand-in for a huge variety of life experiences, only some of which fit mine, and the ones that do fit aren’t generally the first ones people think of (or even ones that people automatically conceive of as existing at all).

  9. I believe the word for what you’re describing, Amanda….is “heuristic” and people are very good at creating those…..

    those are mental shortcuts…..take the bits you can easily see or understand and make the rest of your observations around those bits…..is what alot of people do. the “you” in this case is the impersonal you……..could be anybody.

    Simple but not necessarily correct assumptions……..more often incorrect than correct, I would conjecture…..

    I’ve got so much on my plate I want to cry out…….in frustration…..

  10. Athena: Yeah, possibly “heuristic”, although words like that bounce off my brain and won’t stick.

    Then the really “fun” part is being held responsible for whatever image is created in my place, even if I give a ton of information that contradicts whatever “heuristic” is being formed and do everything else I can possibly do to communicate that the reality of my (and anyone’s) life is not a tiny set of neat little connect-the-dots patterns that can be arrived at almost without thinking.

    To that end, I’ll point any possible new readers at:

    Please don’t take me as typical, Disclaimer on assumptions, etc. Basically, poke around my blog long enough and it’ll be obvious that neither the prototypical “high functioning geek” stereotype nor the “low functioning and discovered to be intelligent” stereotype actually have that much to do with my life, even if you could really badly gloss my life to either of those two by selecting out specific traits and ignoring others. (And even though most people do gloss my life in one or the other way and not realize they’re doing so, even if I’m practically jumping up and down screaming and waving flags saying “Hello, hello, I’m over here, not over there.” And if I forget at all to do the flag-waving at any point in time no matter how small, or just don’t have the energy to do it, I’ll hear about it later.)

    Synaes: I can’t even remember.

  11. Hi Amanda! I saw the article on wired, and then went looking for you online, and found you here. I just wanted to say your videos are brilliant, and if not created to be works of art, then accidentally have become so. The music you are humming in the “In My Language” piece was haunting, and an absolutely ideal soundtrack to the piece.

    One of my best friends is an aspie, and has a hard time fitting into social functions, sometimes becoming so overwhelmed he has to step away. I’m aggressively manic depressive, yet am considered more “normal” than he is, because I’ve learned the rituals of socialization. It doesn’t seem to matter that in my own head, I’m all over the place, and that I feel like these social rituals are play acting something I don’t actually feel…your video helped illustrate to me how false this entire judgement system of “normal” is, even for myself. THank you, keep at it, and a huge virtual hug from me for being so ballsy.

  12. Just want to point out that the Wired article didn’t bring me here. It was the video. I came because I want to learn more and to change any misguided perceptions I might have.

    Mostly though, I just want to say that it doesn’t matter so much to me if you’re typical or atypical; you’re inspiring. You’re giving strangers like me an opportunity to see the flip side of your situation, autism included, with an insight into ways we can answer the question: what do I do? That awareness alone can go far towards dispelling so much confusion and I’m grateful to you for sharing.

  13. I have several anxiety disorders, but I hide my symptoms well. One time when I was having a particularly bad panic attack and trying all sorts of things to feel better, I started flapping my hands in a way that I’ve seen autistic people do … and it did make me feel better. That being said, I would never do it in public, for fear of being ostracized or stared at or worse, accused of making fun of autistic people.

    But it would be nice if all people were allowed to express their feelings openly in what I feel is a perfectly healthy way without having to worry about what other people think of them.

  14. Yeah, it would be. And any movement that helps a person regulate their emotions or senses should be seen as okay and not something awful, as long as it doesn’t involve whacking other people on the head or something. :-P

  15. This is not a comment reflected toward your last posting, but to the entire blog that you have written.

    I am a Psychiatrist, and have been practicing for 5 years. I have been trained and have learned about autism in the traditional way it was taught. My practice does not typically include autistic spectrum disorders, but I do see them from time to time. I am certain that you have had people refer to you as courageous and strong and congratulate you on your efforts, which you certainly deserve, but I am sure this was not your goal.

    I want you to know that you have changed my mind about what I have learned. I appreciate the lesson you are trying to teach.

    While it is an uphill road, I will climb it with you to begin to change people’s minds about this condition.

    Thank you.

    Dr. L. Z.

  16. The Wired article does serve a good purpose of introducing neuro-typicals into the world of Autism. Just maybe some folks will reconsider that Autism means broken although I shan’t hold my breath since that would mean changing some pre-conceived notions.

    Nice interview and I definitely like the creative means of communication.

    At some point I’ll poke around the rest of your blog.

  17. It was quite a good article, especially those who are uninitiated to the autistic rights discussions. It did strike me as odd in a few places, such as the false dichotomy they appeared to set up (that because autistics are more intelligent than was previously assumed, and because non-speaking autists can often communicate through typing, that it means that we’re not disabled, and furthermore – that it would be insulting to think of us as disabled, which it is not and shouldn’t be).

    I also didn’t care for how they simplified Asperger diagnosis as being just eccentric, socially awkward people. It seemed too narrow a generalization. Some other minor things.

    Overall, however, it is really a great, moreover accurate piece. I didn’t catch the misquotation, though I had seen christschool’s video, so I knew where the attribution for that actually is. Certainly it’s a far cry from the “pity these poor pathetic half-people who are trapped inside that horrible prison of autism” type stuff we usually see.

    It still irritated me a bit that it seemed as if the case for being a valuable person was intelligence-dependent. It seems to stem from that idea of disabled people “needing” to compensate by being extraordinary in some other way. But that didn’t seem too prominent, whereas some other articles that’s the whole angle.

    It’s nice to see someone listening to us, and then NOT horribly distorting our words to the ends of what they think makes a “sensational” story.

  18. I actually find helpful movement itself. Repetition isn’t the single overarching feature, although it does tend to having “themes” and some themes are very simple and repetitive. Often, though, what I do with my hands is kinda like signed gibberish, which I also do along with music. I also tap beats from music, and this got me in trouble from when I started doing it in sixth grade until I finally left public highschool for a less traditional setting. It was incredibly liberating when somebody told me to stop doing that and chill out and I was actually able to tell them to stuff it!

  19. Dr L. Z.
    Please don’t take what Amanda says just as about ‘autism’ either. You state that most of your practice is not autistic – many of them will likely benefit from you applying stuff that Amanda Baggs says about disability and difference despite not having the same label as her.
    Regarding hand-flapping – I occasionally flap in public. I’ve gotten stares from people on occasion, but I’m working on not noticing them because I want to be freer to be myself. Ironically, when I’m with my family, even in a public place, I seem more free to be myself because they accept me.

  20. Well, thinking it’s because of the tape is somehow really cute :) and innocent. You can always hope so, but i believe it always happens so with articles. Like when that time i gave an interview to a minor magazine about learning Japanese myself.. The girl wrote some stuff that sounded QUITE wrong.. Made me look smarter than i actually was.. That was rather awkward. Later i actually had to talk to people about it cause i offered my e-mail for people who wanted to ask questions.. (It’s been a half a year, they still mail me, i can’t believe that). Knowing they’d mail me, i didn’t want them to see me as someone i’m not. Anyway, they do that. Reporters, i mean. I guess it’s part of their work. Otherwise maybe people wouldn’t read the articles.

  21. I saw your video on Wired. The article was OK (still rather insulting, I thought), but your video was AMAZING; you gave me a new experience and showed me a unique viewpoint.

    I’m a “normal”, but think I understand a little bit how you see things, and I want to understand it more.

    I can’t thank you enough for this. Your video will have a lasting positive effect on the world; you should be very proud!

  22. I read the Wired article and I saw the video (which was awesome, btw). You sound like an amazing person and an inspiration…thank you for sharing your story. :)

  23. I found this site after reading the article. Thank you for sharing it, and these videos. Both have been extremely enlightening.

  24. Pingback: Wired article on autism « Doctoral student - linguistics, language and studies

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