In My Language


If you’re sick of videos, skip this post.

This is dedicated to Ashley X and everyone else who’s ever been considered not thinking, not a person, not communicating, not comprehending, and so on and so forth.

It’s also dedicated to people like Bryna Siegel who claim that the way we move is automatically purposeless, pointless, harmful to our development, and can be eliminated with no cost to us (but may be able to be used as a “reinforcer” in controlling other things we do).

Google version (click here for large version):

YouTube version:

There’s thanks at the end to a zillion different people who influenced making this. I’ve wanted to make it for a long time, and somehow Ashley X’s situation pushed me into the final stages of it, even though it never talks about her directly. Lucas and Charles over on Michelle’s message boards had planted some of the seeds, Donna Williams gave me (probably without meaning to) one of those final little pieces of things that is tiny but makes everything make sense in a certain way, and this was the result.

About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

88 responses »

  1. You have a beautiful voice.

    And my anger is renewed against a speech therapist my son had, who somehow could not understand what he was communicating — things that were obvious to me, obvious as attempts at communication and obvious in their meaning. I think she suffered a certain paucity of imagination (inability to fit anything but her preconceived notions of the world and of what constitutes communication) and ability to observe objectively.

    And my heart breaks again over that. That someone who was being paid to help my son better communicate could not understand what he was already capable of communicating, and capable of any sort of useful understanding. (Fear had to be extreme for her to interpret it correctly. Or she had to actually be paying attention, something she often failed to do while actively engaging him — and I don’t understand that, how you can try to teach someone to communicate when you refuse, consciously or not, to understand that there is communication going on already and that you can build on what’s there.)

    You are beautiful and my heart is breaking over someone else.

  2. This (synthesised) voice was much easier for me to parse than the one you used before.

    The part with your voice sounded mournful to me, which would fit the topic, but I don’t know if you meant it that way.

  3. These words can’t do anything to really respond to this the way I would like to, but I don’t even know if there’s any way to transmit the response I would like to over the computer. I’ll make an attempt, though, but it might sound strange:

    Undulating, wordless symphony
    a universe within a universe within a drop of vapor on a screen
    brings tears, and half-forgotten breaths, and curious
    impressions of a song I understand
    or think I understand.

    Complexity exists at every level
    and levels are not linear, but spread
    across, within, around, inside, and through
    the myriad dimensions of the thing
    that must defy attempts at summary.

    (not sure if that’s silly or embarrassing or anything, but it’s what came out).

  4. So much wonderful to stim on….I especially love water, kept rewinding that part, love playing with slinkies and in the water.

    Your humming/singing reminded me of the language a child I worked with naturally had (his parents considered it non language, he interacted if you sang back, whatever, it’s communication). He used different tones for different emotions and things…so we’d be going through the grocery store singing at each other…

    Thank you for sharing your interaction with the world. It
    a) showed me once again how K and I are waaay more alike than his parents thought (which *I* knew but it’s, like, third party proof)
    b) was just visually and auditorily STUNNING. You really have a way with the video.

  5. Thank you for making the video. As for anybody thinking that people like Ashley X have no communication or interaction, I will say this:

  6. Do you mind if I put this video up at my blog (with a link)? I thought it was amazing, and as everything I find at your blog is, eye-opening and enlightening. You are constantly blowing my ignorant theories about disability and humanity out of the water, and I really appreciate it.

  7. Amanda, thank you for a very interesting and provocative video.
    Please forgive me if these questions are impertinent; your world is new to me.
    1) I am neurotypical. Do you want neurotypicals speaking your language (as opposed to insisting you speak ours)? If so, what would you like to see in our interactions with you? Are you looking for friendships with NT’s?
    2) Is your perception of beauty similar to that of the NT world? (That is, do you see beauty in the same kinds of things we do — beautiful paintings, sculptures, nature scenes, and the like? Do you see beauty in people, and if so, where and how? Does beauty serve a purpose for you?
    Again, please consider these honest questions.

  8. I think I’ve lived a terribly sheltered life. In your stimming videos I’ve never seen anything that looked unusual to me, that I wouldn’t do occasionally, and yet I’ve never had any reason to think that I’m strange for doing those things – a little different from others, yes, but not very much so. And yet, you and others describe how people are forced via terrible means to stop such very natural behaviour… Ugh.

    In fact, the way different stims are described in medical literature, I even thought they were something truly … mad and horrible before I saw your videos.

    I don’t know, with these things seeming so natural for me, I’m thinking that perhaps the people who say that stimming is bad and strange, perhaps they’re just pretending not to understand? Or at least, working very hard to suppress their understanding?

  9. In reply to Kathryn:

    1) I’m not specifically looking for non-autistic people to speak my language with me in order to make friends. I am more interested in non-autistic or non-disabled people recognizing the many different ways there are of communication (and the many different things there ae in the world to communicate with), even if they don’t understand right away, because it’d be far better if people were not automatically considered non-communicative just for being non-standard.

    2) I think I see beauty where most people do in some instances, I also see beauty where most people don’t. I find a lot of people considered ugly or even deformed by most people, quite beautiful, and not in terms of “looking past the ugliness” but because I just don’t see them as ugly in the first place. I often especially like the way people move. I find a lot of objects beautiful that other people would consider either ordinary or ugly, usually just some aspect of the object they aren’t looking at. I don’t know if beauty needs a particular purpose.

  10. In reply to Ninhursag:

    I have a lot of trouble seeing anything bad or even unusual about “stimming” either. It seems like it makes up a good chunk of how people see us as not paying attention to things, and yet I just have never seen it that way.

  11. Wow! I found a post you left at Dave Hingsburger’s blog. If you don’t mind, I’m going to send it to everyone I know. It’s not just a great comment on language and disability; it’s a breathtaking film in every sense. I’ll be back for more of your insight.

  12. That was beautiful to watch. I especially liked the spinning beads, and how you were moving your hands a the beginning. And your singing.

    And I don’t get the firm line between ‘stimming’ and the various othe ways people interact with the world, either. I’m NT, and I’ve done my share of spinning strings to see them move, listening to how paper flaps, putting my hand under the faucet just to feel and hear the water, and things that would probably be labeled stimming if I had a diagnosis and people watching me every minute to see if I did something that didn’t make sense to them. I don’t flap my hands or taste books, but I don’t golf or smoke either. If there weren’t the gulf created by the ‘that’s stimming and a symptom of sickness’ idea, then that would be seen as a matter of personal taste and interests, not sick in some people but not others.

    Maybe part of the difference is social rules? The neurotypical are more likely to pick up “Don’t do this in front of others or they’ll think you’re sick/crazy,” and people with autism having a harder time either learning or following the rules on not doing it in front of others?

  13. Thank you, Amanda.
    If you don’t mind my asking, how old were you when you became able to communicate via the keyboard? Do you (can you) handwrite as well, or just use the keyboard?
    And would you mind explaining why you are able to put together such wonderful and fascinating thoughts, but you don’t find yourself able to do self-care such as bathing or feeding? Again, these are honest questions as I am truly trying to understand where your world is.

  14. Can you give an example of an object that most people would find non-beautiful (perhaps not ugly, but just not of interest) that you would find beauty in?
    And what is your reaction to most NT people? (I’m not talking those who have harmed you in some way; I’m just talking about your typical NT person you might come across on the street or in public.) What about “us” do you find interesting, fascinating, repulsive, repelling?

  15. J, one time Amanda was talking about how can people think that she is “this mind trapped in that body”, (idea being that they are misreading, thinking there is some disconnect between her mind and her body, when really both are part of her, and her mind is not only what she writes, but also the thinking that lets her interact with the things around her in this way, etc., this has been said better first hand but just trying to summarize…)

    And i was thinking about how much fun Amanda and other “obviously autistic” people get out of doing their favorite things that are pleasing to the senses, it occurred to me that maybe the ones who really are trapped, in a different sense, are those of us who are “passing” as normal, and even the NT people too, because we have to behave our bodies in a certain way and don’t have the freedom to do “strange” stuff even if it would feel good and would not do anyone any harm, becos we are afraid we will look “crazy” or autistic or whatever label people will think when they see that.

    I don’t know if this is on topic anymore, but it was when i started writing it…

  16. You are most definitely welcome Amanda. And thank you for posting this video.

    Charles, aka “Chasmatazz,” “Chasmatazz64,” “TheScaleyDragon,” “CANyouRELATE.”

  17. Is there a transcript available? As a deaf person, I’m unable to understand what you’re saying, but this looks interesting.

  18. OK, I guess I wasn’t patient enough to go through the first three minutes with no clue as to whether or not any of it was captioned or what. My mistake.

    Interestingly, deaf children are very often mislabeled as mentally deficient, in part because for so many decades ASL was not considered a real language and even now deaf children are still forced to waste many hours trying to learn how to approximate speech — because being able to speak — verbally — is the definition of intelligence. Even to deaf educators who ought to know better.


  19. beg, i thought Deaf people were encouraged to learn to voice because it gives them more chances of getting ahead and getting along in the hearing world. i find it horrible that this would have implications on a person’s intelligence, though i don’t put it past some people.
    i would never think a Deaf person was less intelligent because they “only” used ASL, but i would think they maybe would have a harder time getting jobs, etc. my mother is a teacher for the Deaf and she loves the Deaf culture and language (i have learned some sign, too, and i have sometimes gotten to hang out with her Deaf friends, and i think it’s a great language) but she thinks that with more options for communication, a person will have more options for their future. just like a foreign person (for example, my husband), when they immigrate they shouldn’t be asked to give up their original language, but they have to learn the language of the country they immigrate to, in order to get decent jobs. what do you think about this reason for learning to voice? QQGA

  20. Hi Amanda, I like what you wrote ‘I find a lot of people considered ugly or even deformed by most people, quite beautiful, and not in terms of “looking past the ugliness” but because I just don’t see them as ugly in the first place.’
    Can you be my friend?

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  22. In reply to #20, “n” asks why teach speech.

    The problem with educating deaf children is that there is NOT a one size fits all blanket. And yet, virtually every deaf child undergoes speech therapy. This wouldn’t be so bad, except… even when the deaf child in question cannot benefit very much from it, the lessons continue and continue and continue…really to the point of neglecting most other things the child needs to be learning. I think that’s part of why so many deaf people have such poor reading and writing skills in English (there are other factors, to be sure). But there is no explanation for this almost insane insistence on speech therapy (to the detriment of overall education) than this unconscious speech=intelligence paradigm that hearies (and not a few hearie-conditioned deafies). Even my experience is an example — I am actually one of those who pretty much picked up speech once I got hearing aids (born deaf but not diagnosed as such until about 3 years and then only because I wasn’t talking like I should have been). I didn’t need speech therapy pretty much once I was in second grade or so. And yet, I was forced to take out a day a week for speech therapy! I finally rebelled in 6th grade … and my grades shot up as I was no longer having to play catchup all the time due to missed time in my classes. They actually started up speech therapy in high school again (I have no idea why, to be honest) and I squashed that one too after about six months. Now, imagine what happens with a child that really does not benefit from speech therapy.

    The other thing that happens very frequently, even today, is labelling of deaf children as having other problems in addition to being deaf: mental retardation, personality disorders, poor impulse control, laziness and so on and on. The majority of these labels come from the people teaching the children, not from people “qualified” to assess this. These attitudes can shape the entire child’s school career.

    While there has been a lot of ground covered in starting to recognize ASL as a bonafide language, there are still many problems entrenched in the educational system, and of course the overriding problem: most deaf children (90-95%) are born to hearing parents, so the ideal conditions — learning ASL as a native tongue, which has been shown in research to ameliorate nearly all of the educational problems, especially if English is then taught properly as a second language (the Bi-Bi concept) — are almost impossible to attain. Even for parents willing to learn to sign (and shockingly few are) most will not attain fluency in time for their child to benefit.

    So now you see things like surgery (which pops to mind when I read of B’s descriptions of the “therapies” used to stop the various motions and such) to address this situation. Now, I have no particular issues with cochlear implants, don’t get me wrong. If you want ’em, get ’em. The problem I have is that they are sold as a “cure” to deafness. All they are is a glorified hearing aid. They will work well for some and not for others. You will find many CI people find their way into the world of ASL anyway. Lots of issues, and I don’t want to take up space here, but since you asked…

    You might find The Mask of Benevolence by Lane to be of interest in this. Anyway, that’s what struck me about B.’s video, these parallels between other methods (non verbal) of language and the consequent labelling.

  23. In response to “N”:
    I was at the gym today, running on treadmill and listening to my iPod, enjoying myself and making drumming motions with my hands as I was listening to the beat. And thanks to Amanda’s video, it struck me that what I was doing looked almost exactly like the stimming — but mine was “OK” since I’m neurotypical and I was doing it in relation to music. Very eye-opening.
    Amanda, do you listen to music? If so, what kind do you enjoy?

  24. Wonderful
    I will use this with my students–college students who do not experience autism–who are studying to be teachers. We were talking about this sort of topic yesterday in class–that our lack of understanding evidences our lack–not a lack on the part of the student with autism. However, you say it so much better than I do.
    Thank you

  25. How would you recommend we communicate with our son who sings as you do, but we do not understand his language. We know he is constantly thinking so many wonderful things, but we do not speak the same language. We want him to know that we value him and his thoughts. How do you bridge the gap and find a language that we can share?

  26. Wow. I am so grateful people like you are willing to be “bilingual” in helping those of us who only know “NTspeak” understand more about this thing we call autism. Irony of ironies that some NT folks claim people with “severe autism” don’t have communication. You, in fact, have more than many on this earth — I never thought of some of the movement differences as a purposeful way of communicating with your environment!

    I love that you give people with autism permission to be autistic. Too many I know who type wish they could control their bodies, manage their anxieties, deal with their sensory issues, and communicate in a manner that NT’s understand more easily. Thank you. Like Leslie D., I will use this video with my students, both adults taking graduate courses and those younger ones I have the pleasure of knowing who are in public schools and who need you as a role model!

  27. Amanda, I am so glad that someone forwarded me your link. I am not autistic, but have learned through children, some autistic and some not, to be open to experiencing the world more fully than the tunnelview that growing up pushes us towards. I found your multi-sensory poetry extremely beautiful and haunting. I could feel the cool touch of the smooth paper of the book on my face, and like you, wanted to rub it around and around like a cool pillow. I could see your finger ballet, dancing with the rippling flag in the wind, and found my body swaying to join your dance. Your video stays with me long after I reached the end, and I rushed to share it with others. I’ll have to rewatch (again and again), but I could swear I saw your hands and a potters wheel, and your scraping as though creating an otherworldly sculpture (poetry in motion, art in the process instead of in the product). In the sound overlay, your song changed its tone and mood, and evoked a series of emotions in me — a new meaning to “tone poem” I guess.

    Howard Gardner and other psychologists write about multiple-intelligences. I’ve never seen them so vividly demonstrated as with your video. And then you added the final touch: Your verbal commentary that helped us bridge the gap between what we might have experienced but not understood earlier in the video. Artists often hate to have to explain their creations. I’m touched that you went further to comment on something that WAS already speaking so eloquently for itself. But instead of forcing a specific perception, your words added an even further dimension. Thank you for sharing your multidimensionsal vision with us. You sound like an incredibly rich and interesting person to get to know. My world is a richer place for having experienced your video.

  28. Wow, someone actually noticed that was related to the flag (and the tree branch for that matter).

    The book is actually somewhat rough, which is why I like it above a lot of other books. (Interestingly, the book also has a picture on the front that reminded my mother of me, which is why when I was a kid she bought it for me. The picture is a drawing of someone totally intent on a daisy.) It’s got more texture than most smooth pages do.

    I don’t mind explaining art, or jokes, or other things, when necessary, because I know what it’s like not to “get it” and to have everyone go “No, if I told you why it’s funny/what it means, it’d ruin it.”

  29. P.S. As I was driving my son to school, I had another thought. My eldest, by the way, has Aspergers, and my youngest has a lot of autistic characteristics. We talk about “sensory processing dysfunction” with individuals on the spectrum. To the extent that their way of processing the world overwhelms them and creates irritations and annoyances that other people cannot perceive, I understand the term. We sometimes talk about sensory cravings–oral cravings, or my younger son craves deep pressure. I never hear us talking about sensory perceptual “gifts.” Amazing how that shift in view changes everything, eh?

    And yes, I saw the parallel with the branch. I’m looking forward to re-viewing it to see what else I missed, it was obviously carefully edited and created, with multiple layers in the selections.

  30. Your YouTube video was posted to a LiveJournal community I read, and I found it so powerful that I looked to see if I could find more information on it. I’m very glad I found your blog, so I could thank you for it.

    How we define communication, intelligence, and personhood is such an important topic, which gets so ignored precisely because of the issues you describe – it only “counts” when it’s in the language of the majority. And that has profound results in so many areas, across so many spectrums. I think you illustrated that truly beautifully.

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  32. Just a couple of quick comments, now that I’ve finally bothered to watch the video.

    First, I often find myself doing many of those same things. It’s not really a sub-conscious kind of thing, but I do think a different part of my brain takes over when I start. I’m never appalled when I realise I’m stimming, either, because it’s so interesting. I will sit and play with something and simply enjoy the feeling and whatever other sensations there are. I never thought of looking down the inside of a Slinky before. I love watching them from the outside.

    Second, there is lots of truth in what you say (in ‘our’ language) that makes much sense. If we use our observational skills, communication is obvious.

  33. You have become a brilant communicator for us less knowledgeble humans. You be a genius on a new level to put it to normal society in such a beautiful poignant and simple explanantion.

    We must have missed this all along; how could we not have seen it? Thank-you . It seems that you have remained at the high level of experienceing that we all had as small infants when all language was understandable. We forgot– you remembered.
    I found the singing very calming. God Bless.

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  35. Thank you. Your singing was enchanting — it drew me in and made the things I was looking at magical and meaningful. I feel privileged to have seen your “dance” with the world.

  36. A bit of personal associativity (for me at least), between the wordless language of sensation and stim, and language-with-words:

    “Should old acquaintance be forgot /
    Keep your eye on the Grand Old Flag!”

    (When Jeremy was in elementary school — 2nd grade, I think — his class learned George M. Cohan’s “Grand Old Flag”, and he happily fixated on the Red Grammer performance of it he had on CD. Came right back into *my* memory, too, during the flag scene in “In My Language” :-).)

  37. Thanks for the video, it throws up so many important issues about normality, what it is to be conscious and how we respond to the world (artistically and in everyday life). I haven’t seen anything as thought-provoking for a long time.

    One of the things I thought about was a poem by Robert Graves called “The Cool Web”:

    Children are dumb to say how hot the day is,
    How hot the scent is of the summer rose,
    How dreadful the black wastes of evening sky,
    How dreadful the tall soldiers drumming by.

    But we have speech to chill the angry day,
    And speech, to dull the rose’s cruel scent.
    We spell away the overhanging night,
    We spell away the soldiers and the fright.

    There’s a cool web of language winds us in,
    Retreat from too much joy or too much fear:
    We grow sea-green at last and coldly die
    In brininess and volubility.

    But if we let our tongues lose self-possession,
    Throwing off language and its watery clasp
    Before our death, instead of when death comes,
    Facing the wide glare of the children’s day,
    Facing the rose, the dark sky and the drums,
    We shall go mad no doubt and die that way.

  38. I really think that you should submit this film to the seventh annual Media That Matters Film Festival. Here is the link so that you can get an idea

    Our deadline passed last week but if you were willing to submit, we would happily accept this powerful film as a late submission.

    Here is the submission info: Link:

    Call For Entries – Seventh Annual Media That Matters Film Festival
    If a film is made and no one sees it, does it make an impact? Submit your film to Media That Matters and be heard.

    If you want to make an impact, this is the festival for you—Media That Matters will bring your social-issue short to audiences around the world! Sixteen winners get an international distribution deal—DVD, broadcast, web streaming and hundreds of community screenings. Plus many films get cash awards. Media That Matters launches in NYC with a premiere and awards ceremony (previous presenters have included Tim Robbins, Chuck D and David Cross). The shorts are distributed to educators with a Teacher’s Guide and integrated into activist campaigns all year long.

    The shorter the better! 8 minutes max (if your piece is too long, consider submitting a shorter cut or a stand alone excerpt)
    All genres welcome: Documentary, Narrative, Experimental, Comedy, Animation, PSA, Digital Story, Music Video, Game, Interactive Online Project, Youth Media
    Seeking films on any social or environmental issue—we are particularly interested in submissions on Elections and Democracy, Food Politics, Criminal Justice, LGBT Rights, Youth Activism, Health Advocacy, Racial Justice, Human Rights and HIV/AIDS
    Youth-produced projects welcome!
    All music and other rights must be cleared and film must be available for home video, educational, broadcast and theatrical distribution
    Submissions must be on NTSC DVD (preferred) or VHS ? no PAL or mini-DV entries will be considered
    Limit 2 submissions per filmmaker, youth and community media centers may submit up to 5 pieces
    Cash awards of $1,000 will be distributed to most films
    Submission fee: $25 / Free for students

  39. Wow, that was an awesome video. I agree, you should send this to festivals. If you want I can email you a list of festivals that might screen it. It’s so beautiful, I’ll be emailing this to friends.

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  41. This is fascinating. I fail to see how anyone who has read your writing could assume that you are non-thinking. You HAVE learned “our” language, you speak it quite fluently, that is evident in your entire blog. You are just as fluent in English as I am – you just don’t make it with your mouth. I think it is because of this that your video is all the more powerful. What could have been a voyeuristic freak show is turned into a strong statement because you are able to express yourself to us. If I hadn’t heard the translation or read your words, you are correct: I would have assumed you are in your own world. But because you were able to tell me the DIFFERENCE between your world and mine, it makes such perfect sense and I am so grateful to have this insight into your world. This, in turn, leads me to believe that just because someone cannot communicate to me what they are thinking does not mean to me that they are not thinking…it just means they don’t have a way of telling me.

  42. Amanda, my deepest respect for your courage (maybe in your perspective it is not even courage but merely a necessity). Anyway, there are obviously people around (as I noticed, browsing) who cannot refrain themselves from making hateful remarks. Ignoring those remarks would cost me a quite some energy. Respect to you!
    Anyway, I want to ask you the following. Some people have asked for a transcript of your video “in my language”. I am a moderator of a Dutch/Belgian scientific forum where your video is being discussed. However, I do not agree with the interpretation which some people have of your message. To offer them the purest form of your message, to prove them wrong, a transcript is handy. So that people who do not have the patience to take the time to look at your video entirely or people who have a hard time remembering what you said exactly, can form their own opinion.
    I could not find such a transcript and therefore made it myself, writing down all the captions in a Word Document. Do you want that document? If yes, I’ll send it to you.
    Best regards,

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  44. I am a school psychologist working with special populations of students. I have noticed that the families who accept and love their children, and attempt to learn the communication used by their children are much happier and make the most progress. I work with a large population of parents who want to “cure” their children, and I am sad that they don’t realize that all people are different in many, many ways, and by not changing, but teaching and learning we can make a difference. This video was so well done, I am going to show it to all the high school classes in which I am working to make my students be accepted for who they are. Thanks you so much for your wonderful work.

  45. Hi Amanda,

    There are times when an idea you are exposed to creates some kind of chain reaction in your brain, where each thought becomes a breakthrough which leads to another breakthrough, like a chain of fireworks rapidly firing in your mind, leading up to a big bang – a gestalt moment. This is the kind of chain reaction that started in my brain after seeing the translation portion of your video on CNN. In reading/viewing the accompanying journalistic pieces about you, it seemed there was a profound disjunction between the video itself and the reporting surrounding the video. While you were busy trying to convey that there are many ways of thinking and communicating that greater society should attempt to understand and acknowledge, the reporters were busy thinking, “wow – an autistic person who can type,” and therefore completely missing the point. But still, I am glad your video was featured on CNN, as otherwise I (and so many others) would not have had the chance to see it and think about it.

    After reading the CNN articles, I decided to visit your blog, which started me on a frenzy of speed-reading your posts, researching on the Internet, ordering books on Amazon, and finally, typing this response. I have to admit that at the moment I am completely overwhelmed. I suspect that somewhere in my subconscious the hamster wheels are turning at a furious pace, but my conscious mind hasn’t had the chance to absorb or synthesize it all yet. The amazing thing is that at first glance, you are talking about autism, but most of this isn’t really about autism at all, is it? Autism seems to be only the jumping off point to so many other intriguing and thought-provoking ideas. Interestingly, reading your blog led me to research not only autism, but also the (seemingly) unrelated topics of animal rights, psychodermatology, environmentalism as it relates to the interdependence of human beings, etc. I don’t yet know where all of this will lead – maybe nowhere – but it has at least got my brain working.

    This is the first time I saw the beginning of the video, which I found entrancing and beautiful. I’m not sure whether you intended the piece to be artistic as well as a social commentary, but it does nevertheless have artistic and aesthetic value. The beginning of the video seemed like a dance to me, with its haunting song, percussive sounds and rhythmic movements. Having studied dance for years, I believe dance to be a powerful form of social and individual expression, and therefore a form of communication, even though it does not convey anything linguistically. When viewed that way, perhaps your language is not so different from a language that many neurotypicals can understand – the language of art.

    Thanks for being brave enough to show us a little bit of yourself. The courage and willingness to reveal what is behind the mask of “normalcy” that we all wear to a greater or lesser degree is of essential importance to societal change and growth. Your work has inspired me to try to overcome my fears of letting the world peek under my mask, too.

    – Amity

  46. Amity in #58: i don’t know if it was also here, or only in chat conversation, but Amanda has definitely mentioned that this video was intended as art, as well as activism.

    i remember one time she tried to explain to me her way of thinking, what she refers to here as her first language (before words-language), and i say “tried” because it’s hard to put something into words, for someone who hasn’t experienced that, when for her this is above and beyond words. and it was hard for me to imagine, because i guess i think in pictures, like a ‘typical’ autistic (haha). and my reaction was “oh, you think in poetry!” (i meant that the stuff she thinks is the stuff that poets are trying for with words). but that was not exactly accurate, either, because poetry is so tied into words… you can see in different places some explanations she gives about this video.

    maybe her native language is closer to art and music, as Amanda has mentioned that the ppl who really “get it” what she is doing in this video, are artists and/or musicians. like i was telling her about this one guy in a tv show once who did a percussion act, where he played this whole song on his kitchen. he played all the parts and items of his kitchen as percussion ‘instruments’. the artistic aspect of this video is a bit like that. the choreography of the interactions with stuff, it’s not symbolic; it’s just interaction with the sounds or other sensations of the items.

    Amanda please excuse that i am ‘third-personing’ you here; i hope i remembered things right. if i twisted your meanings any, you can go ahead and delete this comment.

    OH i found where some of the discussions / explanations were. just a few days later:

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  48. wonderful video guys. i, like a lot of people i guess, have always considered humans to be a highly symbolic species. whilst i am reasonably comfortable with that notion (it allows a level of understanding in life) it is refreshing and eye-opening to know that there are people in the world who are interacting with their environment in a manner that doesn’t conform to age-old symbolisms. perhaps people with autism and cognitive disabilities have abilities and ways of enjoying life that people without said disabilities could benefit from learning. perhaps instead of limiting our experiences in life to symbolically understandable experiences we should keep exploring new aspects of life to find new joys and new ways of interacting with the world and in doing so recognize and validate differences in people rather than always squashing people into pre-existing categories.

    anyway got carried away there with psuedo-intellectual stuff. really just wanted to say wonderful and eye-opening video guys. like i said it was a breath of fresh air and has made my night.

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  50. It is a beautiful video which says important and necessary things, and I like your wordless singing.

    However I disagree that your interacting with your environment is language. It is not language in any definition I have seen of the word. In “The Cambridge Encyclopedia of the English Language” by David Crystal, published in 1995, the Glossary defines language as:
    “1. The systematic, conventional use of sounds, signs, or written symbols in a human society for communication and self-expression.”

    “2. A specially devised system of symbols for programming and interacting with computers.”

    One cannot use words arbitrarily to mean what you want them to mean. Like Humpty Dumpty in “Through the Looking-Glass and what Alice found there”.

    It would be interesting to know the reaction of a group of linguistics students to the video.

    Also I like looking at the peripheral items in it.

  51. I was a linguistics student and graduated in linguistics in 1993. Maybe I am uptight about definitions of language (or definions of anything) but I hope I’ve not missed your point.

  52. I only took one linguistics class (linguistic anthropology) and drove the teacher nuts. (Mostly because she kept describing various things as universal human attributes and I kept contradicting her — even when I wasn’t outwardly contradicting her, which I did a lot of, I sort of contradicted her by existing and she knew it.)

    I do find it interesting that, by field, the people who seem to get what I’m saying about language (and the too-narrow definitions of it) the easiest tend to be artists and musicians, and the ones who get hung up on whether what I do constitutes “real language” or not tend to be linguists.

  53. I’m having that experience in my sociology class. I constantly have to remind myself that when they say, “humans”, they generally mean, “NT humans,” and try to quiet my constant mental refrain of, “Hey, that’s not what I’d do! That’s weird!” when talking about the way people interact… NT people, of course.

    There aren’t really enough autistic people in communities yet to talk about autistic sociology, rather than just autistic personality in the individual. But I think we’re getting there.

  54. Linguistics anthropology sounds really interesting. I guess it would include the Sapir-Whorf hypothesis – the idea that language to a greater or lesser degree determines (or at least influences) thought. I studied it in my linguistics course, though I didn’t study linguistic anthropology as such.

    Whether or not there are universal human attributes is a fascinating and deep thought question.

  55. I don’t want to agree with what you’re saying about language because it is cool, hip, trendy, and the conventional definition is uptight and square. But now I get what you’re saying it and like it. Language is more than a symbolic system for communication. It is also being in conversation with one’s environment without using words or symbols.

    Earlier today I saw two young children picking the bark off a tree. I thought that was their language.

  56. <sigh>

    I didn’t use the words “cool,” “hip,” “trendy,” or “square”. I used exactly one word out of the jumble of words you’ve just thrown at me, and that is “uptight”. I didn’t know a better word, and now you have thrown all kinds of cultural context onto it that I don’t come from, I don’t experience, and I didn’t mean.

    The reason that artists and musicians seem to grasp what I’m doing better than linguists tend to (not that a person can’t be both, mind you), isn’t because they are cool, hip, or trendy. I don’t give a rat’s ass about cool, hip, and trendy, and I’ve never been any of the above (autistic people tend not to be good at that, although there’s exceptions). It’s because artists and musicians (at least ones that are any good at what they’re doing) are generally by the nature of their jobs working with kinds of language that fall outside typical definitions of what constitutes language. So they’re more used to thinking in those terms.

    Linguists, on the other hand, tend to, again by the nature of their job, have a lot invested in extremely narrow definitions of language. The reason I said “uptight” is not as the opposite of “cool” and “hip,” but rather because of the fact that linguists tend to have a heck of a lot more emotional investment in whatever their definition of language is. Especially (in some cases, anyway) given the cultural pressures that require language to be a defining attribute of what makes human beings human (which in turn creates pressures to define language in increasingly narrow terms, etc etc).

    So there’s a logical explanation for what I said, rather than whatever mindless bohemian crap you read me as saying.

    I wonder if there’s any version of the Sapir-Whorf hypothesis that’d explain why linguists (who are more likely to be exposed to a particular specialized professional definition of the word “language”) seem to have a tendency to view language more narrowly than people who are exposed mostly to more colloquial uses of the word, then to exclaim “That’s not language!” at the drop of a hat when exposed to language(colloquial-usage) that falls outside their definition of language(professional-linguist-usage). :-P (Yes, I’m mostly joking, but you never know. Then again, most botanists I’ve known haven’t insisted everyone else conform to their definition of, say, “berry,” which excludes blackberries but includes bananas.)

  57. Amanda, I never meant to imply that you used the words “cool”, “hip”, “trendy” or “square” or that you meant those words in any cultural context. I didn’t intend to throw words at you. What I meant to say is that I want to agree with your use of the word language because I am convinced that it is a legitimate use of the word, and not because I think it is “cool” etc. I was trying to be humorous in using those words.

  58. Also, Amanda, I didn’t read you as saying “mindless bohemian crap”. If I had known that you would react so angrily to my comment, I would not have posted it.

    Anyway thank you for your explanation. It provides much to think about.

  59. Any sarcasm was at the idea of cool, hip etc, arising from word associations in my mind sparked off by ‘uptight’.

    I guess there are classical musicians who don’t consider rock music as music, or artists who don’t regard conceptual art as real art. A British artist called Tracey Emin some years ago exhibted her unmade bed with a lot of stuff on it at a major art exhibition. I don’t remember if she won a prize for it. People said it wasn’t art.

    I didn’t know about botanists definition of “berry”.

  60. I’ve just read a book about the science of extraterrestial life.

    The authors speculate about aliens having language. They write that it is likely that most aliens will have “their own form of language, but it might be based on smell, changing colours, tentacle-waving rhythms, or patterns of polarisation in light.”

    They also observe that “language is deeply rooted in cultural assumptions, and alien culture will be *very* alien.”

    Amanda, in your interview published in the March 2008 issue of Wired magazine you say that ‘In My Language’ “was a political statement, designed to call attention to people’s tendency to underestimate autistics.” But I thought it was more than that. That “it is meant as a strong statement on the existence and value of many different kinds of thinking and interaction”.

  61. If you read something in an interview, you might want to say “they say” rather than “you say”. Because often the words written down about the person being interviewed will be slightly different than the words they actually said. I’m pretty certain that I explicitly didn’t confine it to autism when talking to them about it, I’m also pretty certain that the guy’s tape recorder broke and he had to go off handwritten notes as to what I’d said.

  62. Philip: If there are quotation marks around it to indicate an exact quote, then generally yes (though even then, some media outlets will “clean up” things like minor but obvious grammar errors, or take out empty noises like “um, er,” etc. Very few people talk in a perfectly sanitized way: if all reporters made literal, exact quotes, it would look messy on the page.).

    But if it’s a paraphrase, then what you’re getting is the reporter’s best understanding or interpretation of what what was said, or a summary of it. A paraphrase will not have quotes around it.

    Even when a reporter is recording things precisely, they may not always quote precisely throughout–depending on the publication’s usual style, they may want a mix of paraphrasing, summarizing, and quotes. Plus, background information that they might have gathered from other sources or from observation.

  63. And, totally off the point: when I came to this post (to see the new comments posted here), I saw the first line of your post again, where you say “If you’re sick of videos, skip this post.” I had to laugh. Because, er, obviously people haven’t!

  64. I’ve been quoted as saying things I not only did not say but would never say.

    This was in a Globe and Mail article written by Andre Picard in 2006. The article, which was in English, was drawn from press conference in French. Mr Picard put words in my mouth that I didn’t say and would never say, and also borrowed some out-of-context words from a letter I’d had published in the G & M and tacked those on, all in quotation marks.

    He made numerous other factual errors (e.g., he reported that I was fired–information he did not get from me). On the other hand, he reported the science (this was the AAAS Raven data) competently.

    I’ve also had words put in my mouth in other media stories, but the Globe and Mail’s misreporting was extreme. I’ve also had wording changed within letters to the editor to the point where I could barely recognize the writing attributed to me.

  65. Yes they are considered that too often, and having known a number of people with various severities of Alzheimer’s and other dementias, I find that really awful. They’re definitely still people, and they’re some of the people I was thinking of when I wrote this.

  66. hello I am a member who saw ur site from another web site . I can say i have a disability as well I do have mild retardation but I refuse the meaning of the disability in my occasion thank u for add this

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