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I made the following video after observing a lot of things. Someone on YouTube called me a mong, which is a British term for retard. I saw other people on there being called retards, and I found some of people’s responses to being called that, almost worse than the people calling them that. Sort of like straight people who go out of their way to prove they’re not gay to people who call them a fag, instead of grasping that the problem is the bigotry, not whether they specifically are gay or not. Lots of people say “I’m not retarded” when someone calls them a retard. That seems to me to be missing the point in a big way. (So does “reassuring” me that I “don’t look retarded”.)

I don’t endorse using the word retarded or retard casually, quite the opposite. But when someone starts calling me a retard, or a mong, or any of those other words, my immediate response is not to distance myself from the group of people they’re insulting (that itself is an insult to that group of people), but to say, yeah and proud of it, or yeah what’s wrong with that? People have been telling me I “look retarded” since I was a kid, I might as well respond in some way they don’t expect.

Other people, they express astonishment at my intelligence, and then they act like I’m a “smart” person “trapped in a retarded-looking body”. That’s not how I experience my body. At all. Nor is it really how I experience my mind. People ask me how I feel about that. Often. Or they ask me how I feel about being “lumped in with retarded people” in special ed. As if that’s the problem with segregation, is actually (gasp) having to spend time around other defectives like me. No. Wrong move. Wrong idea.

So, I made a video, about reclaiming insulting language, about why on earth it’s considered such an insult to be called slow, and about why I happen to consider most people’s well-meaning back-handed compliments (“you don’t look retarded,” “you’re so smart for how you look,” etc) more insulting than being straight-out called a retard. And about why I think, when we (anyone) are referred to as retards, the proper response is not to distance ourselves as fast as possible from the class of people we believe that term refers to.

That’s my video. It’s captioned. There’s lots of my cat in it. She’s doing cat stuff, but she’s also doing some very specific things she does to get me to move in response to her. (Which is why she has — not a joke — legal service animal status, officially and everything. She can get me moving when I can’t move otherwise. She serves the same role as a human facilitator. And nobody ever accuses her of writing for me.) Apologies for the construction noise in the background, but, that’s another reason captions are good.

And, just for sheer silliness, here’s a video of my cat drinking out of the sink:

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.

29 responses »

  1. I just thought of something. My cat also likes to drink out of the sink, sometimes. But my cat is not as intelligent as your cat. She can’t do all those clever things that your cat does which qualify her as a service animal (or at least my cat hasn’t shown that capacity).
    But my cat is just as much a cat as your cat. Hmmmm… If a cat can be “fully a cat” no matter how “slow” it is…

  2. I really enjoyed the video, and I learned some things, too. I think it works very well as a video, and the final shot of the weather-flutter-indicator is very funny! Are you the director & camera operator & editor as well as the writer & presenter?

    (I find it educational that dividing up work into special (dare I say, “splinter”?) skills is OK fine for movies, but not for daily life.)

    Thanks!

  3. Isn’t the whole think kind of like saying, “You don’t look like a lesbian, you’re so pretty.” Or, “You speak so well. You don’t sound black at all.” Where they’re pretty much saying, “Yes, I do think this group of people you actually belong to nearly all fit this stereotype, and are bad/unfortunate for not being like me. You, however, are the special exemption to whom I have accorded provisional humanity. Just always be ready to demonstrate that you’re not actually one of them. And feel complimented that I think this way.”

  4. Yeah pretty much what I do…

    I have a digital camera that will record 1 minute and 27 seconds.

    It has a delay button so you can hit the delay button, run off, and it blinks an orange light a certain amount of times, when the light quits blinking it starts recording.

    I write the stuff onto my keyboard. Then when recording I hit the “speak” button.

    Then it all goes onto my computer. And I convert it into a different file format.

    And then I can pick out chunks of it.

    And then I can caption those chunks.

    And then I can stick all those chunks together.

    And yeah I had fun with the radiometer. And while filming it remembered what Larry said about there being no pylons on my previous video. Well there was a radiometer on this one. (It originated from the fact that YouTube was halfway cutting off some of my previous films so I figured I needed some kind of interesting filler at the end.)

  5. I’m not in the early stages of Alzheimer’s. Being human denies people an opportunity to seek and achieve whatever they want. Autistic versus non-autistic differences there are negligible and possibly equivalent.

  6. The mercury parents, who are not all as dense as John Best, think that ND are all cooperating somehow and being led by Big Pharma or the Illuminati or something… but what they don’t know is that we all share one brain and it lives in Ballastexistenz’ body… what she experiences as shut downs is just overload while some of the rest of us use it…. yessss.

    I posted to John’s blog an explanation of how you, Ballastexistenz, preceded, by a year or three, many of us who now promote the beauties of “neurodiversity” so that we couldn’t very well be using you. He deleted the comment. Blew his mind, I guess.

  7. “Asking me to see being called ‘retarded’ as an insult and to distance myself as fast as possible is asking me to choose a medical over a social category, to renounce my ties to people I went to school and day programs and institutions with, and to demean all of us”

    I find a similar attitude from some autistic people, including yourself, towards ‘mental illness’ and specifically the label ‘schizophrenia’. I do not think there is a single underlying biology here, but as a social category of people with shared experiences, it is something I identify with and not something to be ashamed of.

  8. tinted, are you sure you don’t have me confused with someone else? I’m always the one arguing with autistic people that yes in fact there is no appreciable barrier between autism and what has been called “schizophrenia” because our histories are so entwined with the (meaningless) label of schizophrenia that it’s only political accident we’re not defined as part of it still, and that any autistic person meets the criteria for it except the one saying “…and you can’t be autistic”. And that because of that we shouldn’t be distancing ourselves from people considered to be schizophrenic. I’ve pretty much written everything I wrote about mental retardation here, about the concept of schizophrenia and madness in general, over and over again, and usually been one of anywhere between one and two people saying it in whatever given group I was in (and in fact had been thinking about another video addressing this, but I don’t have the technology to do everything I want in that video, but had been writing it in my head earlier today). Are you talking about years and years ago or something (when I admit I once put enough stock in psychiatric-type thinking that I might have tried really hard to argue a distinction)? Because recently, what I remember is mostly saying all the stuff I’ve said here, only also about schizophrenia/madness/etc. I’m fairly anti-psychiatry, but that’s not the same thing.

  9. I’m still trying to get the video to download. It just takes a while. But I want to see it. So while I am waiting I thought I would ask about this.

    You said “There’s lots of my cat in it. She’s doing cat stuff, but she’s also doing some very specific things she does to get me to move in response to her. (Which is why she has — not a joke — legal service animal status, officially and everything.”

    What did you have to do to get your cat to have service animal official legal status? I was wondering because I only know people with vision guide dogs, who had their dog given to them before they knew it. I was wondering because my cat does many different helpful things around the house, but had to move out and now lives with my sister because pets aren’t allowed in the apartment, it is a policy. I never had tried doing things with her away from my home, but where I really need her help is where I live. For example, she did this. Makes sure I wake up to the alarm. If I don’t get up she gently nudges me till I do. Helped me to stay on a more reasonable schedule, she learned to help coax me to get to bed. When I drop something, she bats it over to near a chair so I can sit down and pick it up because it is harder from standing. And other things like that. And I know guide dogs are allowed in these apartments, because a friend has one. But my cat isn’t allowed because she is considered just a pet. So I wasn’t sure if it is possible to get an animal service status, or if that only happens when they are born?

  10. Most places have just required a doctor’s note, some are probably more stringent but I haven’t encountered any yet. Go to a mailing list or web board on service animals and they’d have more information.

  11. You say that schizophrenia is a meaningless label. What I am saying is that for some of us it is meaningful. I dont mean that is is a valid medical category or that the criteria have much to do with who gets diagnosed with what. I am talking about having an experience of things like neuroleptic medication, forced treatment, life on benefits, hospitalisation in earlt adulthood etc. The experience I’m sure varies from country to country and with different generations, but in my experience, the groups I have come across of autistic people and those with chronic mental illness are different socially, in their personal histories and lifestyle.

    Someone who had ‘symptoms’ of sz, but was never dragged into the system or had it dominate their life, is outside what I’ve experienced as mental health culture. On the other had, I was never an autistic child. I didn’t grow up with any label. And I don’t particularly relate to people who did.

    I have friends from hospital and mental health drop-ins, but I don’t have a single autistic friend 4 years after the diagnosis. I take neuroleptic medication and find it helpful, after a trial of 18 months on a very reduced dose. I see a psychiatrist and get state benefits on the basis of having a mental illness.

    Having said that, I have moved away somewhat from the sz lifestyle, because I stopped smoking and drinking, and I sought out an ASD diagnosis because I was fed up with some mental illness stereotypes. Times have changed since the days I was most involved with psychiatry. People are not hospitalised the way they used to be. I have more money to live on. I read more on autism than mental illness online.

    I don’t know if that makes it clearer. It’s that there are different cultural experiences. To simply dismiss sz as meaningless, or to say it’s really the same as autism, is missing the point.

  12. Okay, that makes more sense. I think I left out a lot of the things you’re saying, in my descriptions, but they’re… sort of in the background of my experiences and cause the things I say about this stuff, it that makes any sense. If I’m in a psych context, people peg me as “a schizophrenic”, and they do so because I fit into that culture in a sense (at least from my area), and that’s who I feel the most comfortable around as well in that context.

    I haven’t done a whole lot of writing around that experience (and the fact that I don’t feel any less “schizophrenic” than a lot of people I know who fit whatever medical criteria, etc, because of common experiences), but I have written about it occasionally. I have more thought it than written about it. So I can see it looks like I’m ignoring it, from the outside.

    Also, I’ve never been a part of mental health consumer culture. Even on the inside. I’ve been a part of people-who’ve-been-in-the-psych-system culture, and institutional cultures, and so forth, but I’ve never been part of the people who tend to buy into psychiatry more. When I’ve gone to the drop-ins/clubhouses/etc, I’ve always been more at home with the people who want to get rid of psychiatry — the ones everyone else at the drop-ins tend to think are “off our meds and need a good talking-to from our shrinks” or something, but who make the most sense to me and vice-versa.

    So, I’ve never been a part of schizophrenic-consumer-culture, I’ve been more a part of mad-pride-survivor-ex-patient culture, which tends to do things like sit around dissecting the labels we’ve been given and so forth, more than the other one does. But definitely have been still among the “schizophrenics” more often than not, and know what you’re saying there. Although in my case, I do have a lot of those various experiences in childhood that you talk about not having — so not identical, but I can see parts of what you’re saying in parts of my experience (I’m up late and not writing well here).

    I apologize for not making that sort of stuff more clear when I discuss that stuff though, because I can totally see how it comes off wrong now. I don’t think I’m ever going to come off as someone who’s really into the psych system and believes in it and thinks it’s wonderful and the meds are wonderful and everything, but I certainly know the kind of common experiences you’re talking about, and have not written about them much (mostly because I don’t know how to put them into words).

  13. Your video some things I not-understand.
    I not disagree with you like post #. I am thinking maybe some does not fit in framework I have about view things. So, taking me longer start understand as I have to think different to process this and fit it into a making-sense-pattern.

    You said you wondered people meant by being trapped inside their own body. I feel like that. I not sure though. I think means I want to do something. Sometimes doesn’t-matter how much I want. Wanting does- not help me get over inertia. So feels like being trapped.
    Your idea about fixed sognitive capacity. People have tell me if I was retarded, dumb at all things it would be okay. Or to be normal. Or is okay be dumb at certain things like fixing cars. But not okay, as I am, to be fast learner for certain facts and very slow learner for real life things, also not okay to have abilities tat change so often because that is lazy or manipulative.
    Also quotation about normal I understand. I much time and effort everyday spend trying to be “normal”.
    You also sai some people who learn slower hate who they are but shame is learned and cam be unlearned. How did you do this?
    Also this view, what does it classify me as. If lookng at another person, I note things then are good at and aren’t. I patterns notice. I see them as worthwhile persn does not vary based on these. My friends with various disabilities I like them for who they are. I not even think of wating them cured to be their friend. But in myself, I have opposite view. I have learned not accept me, because others didn’t. I just so accustomed to seeing anything diff]erent in me as bad, I even think this when alone now. I feel like only way I could be person that matters is if I “cured”. Cure make me “normal” I would even accept if had very severe strngs attached. And I just don’t understand when because I very young, I same person but hadnot learned yet nrmal importance of. So I was just happy who I was, sometimes things were hard. But, I think it people’s reactions that are almost wose than actual things that hard for me. So does that make me part of thosebad cure autism people, because I wish I can erase of that from e, even if good things about me changed too. I just wish that because of so many hurtful things, not beause I truly wish be someone different what I would rather be is me without shame but I don’t understad how. I am very tired so notdid not go back and edit ths.

  14. Inertia is familiar to me. The sense of not being trapped in my body, I think I meant, I don’t feel trapped by my body’s appearance. I don’t feel like my body should look different than it looks, and don’t feel like I’m trapped in a body that “looks wrong”. I didn’t mean to imply that I never have trouble with voluntary movement (in fact I sometimes freeze entirely and cannot do anything intentionally, although those times, I often can’t find my body, so can’t find the sense of being trapped in it because I’m not noticing it to begin with).

    As far as how to unlearn that kind of shame, it’s taken a long time for me, and it’s taken spending most of my time around people who do, kind of the opposite of reinforcing it. People who reinforce a sense of this is how I am supposed to be, there is nothing wrong with me, these are even good things about me, etc. And it really has taken years but I’m not particularly ashamed of myself or my appearance.

    This is an article you might find interesting: Disability Shame Speaks, it’s from the point of view of shame and how it tries to get into our lives. And it gets into how when we’re young… well here’s a quote:

    Children are particularly vulnerable to my traps. Eventually they learn that they are different, no matter how many people tell them they are just like everyone else. That is when the fun begins, and I work on teaching them that their bodies are not truly important. In the beginning, they don’t believe me. They run and jump if they can; rock, roll, and crawl if they can’t. Their bodies seem as they really are: Joyously alive, and they move for no one but themselves. They know no other way. But I have my ways of stopping this. I just wait for them to grow up.

  15. On the matter of people not realizing that the cognitive processes you use to arrive at something are substantially different from the ‘norm’, even if you end up with what appears to be the same product… that, essentially, is an encapsulated description of why we have so much trouble getting any help at school. I need to write out the lawnmower/washing machine analogy sometime, as it’s the best description we’ve been able to come up with as to *why* ‘normal’ teaching and studying methods, especially when it comes to math and science, are basically useless for us.

    I think the “but you aren’t really that different from us mentally” (to the point of fighting you on it and insisting “But I do that too,” even when it’s quite obvious they are not doing the same thing at all) is something that people use to attempt to mitigate their own discomfort with what is different, telling themselves it’s less different than it actually is. We’re quite familiar with another manifestation of that, mostly in the form of “But everyone has different personalities and is different people at different times, we just don’t give names to them. You’re actually the same as everyone else,” and similar.

  16. ‘making-sense-pattern’, i am an autistic “passing” as normal (well, maybe) and i still know what you mean about accepting others with their oddities, but thinking i myself am messed-up. only time i think confidently i am doing ok, is usually when i am in a serious mistake.

  17. Thank you for the video. You mention some very important issues, such as “What is the definition of a ‘person'” and “Can some people meaningfully be said to be ‘smarter’ or ‘stupider’ than others?” I really would like to hear more explanation from you on these. When I try to think about them myself, I find myself pretty much stuck. When I think about smart and stupid, I guess I pretty much define ‘smarter’ in terms of one’s ability to not only use logic but understand what logic is, what it means. What do you think of this? Is it meaningful in any way?
    The question of personhood is even tougher, I think. I have read that some biologists studying certain apes became convinced that the apes are people. Also, you said that there were frequent and significant periods in your life where you didn’t have that sort of awareness of yourself that Peter Singer had said was required for personhood. In fact I think that pretty much everyone goes through periods of no conscious awareness of themselves: while they are sleeping (dreams count as periods of partial awareness, but people don’t dream the whole time they are asleep).
    I am reminded of the Buddhist idea of “no-mind”. I’m not a Buddhist, so I don’t know exactly what it is, but the awareness of my own continuity over time is pretty much what I call my “mind”, so “no-mind” to me sounds like stepping away from that–and this is supposed to be a good thing, spiritually speaking, according to Buddhists, right? Those periods you spoke of, where you are lacking that sort of awareness–do you think they are similar to the “no-mind” of Buddhism? BTW, I can barely even wrap my mind around the idea that you can *remember* times when you are incapable of much cognitive abstraction. Somehow it doesn’t seem to me that such experiences could be rememberable.

    Finally, I just had to mention that it looked very physically painful when your cat was walking on your chest. While watching the video I was cringing because seeing things that instinctively look painful to me cause me to feel a lot of pain. Though, you didn’t mention that it hurt, so I guess it didn’t. Still hurts me to watch it, though.

  18. Things like the “no-mind” thing are into the realm of describing things where the words used to describe them can either mean what they’re actually describing, or it can mean something nearly opposite. “No-mind” is what some people would call “post-rational,” what I’m talking about is more “pre-rational”. Keep in mind those are silly word-categories, and possibly not the best words, but there’s an important difference. (I’m getting into spirituality in a later post since it’s the topic of the next disability blog carnival. I was just sitting down to write about the difference there, and the many times people mistake one thing for another.)

    As far as remembering things… just because you’re not contemplating what’s going around you in the usual sense of contemplation, does not mean you’re not encoding memory. And, just because you’re not contemplating in an abstract way, does not mean you’re not thinking, even though it can seem like that if you take the definition wrong. (Sue Rubin also experienced time periods like that, but she refers to it as “not thinking” and herself at the time as a “non-person”, whereas I only use “non-person” when describing dehumanized portrayals and such.)

    Like, for instance, a good example everything becomes patterns of light and shadow and sound and texture, and my body gets caught up in the patterns and chases them around, and I am reacting to my surroundings but the way I am thinking of them is so foreign from abstract thought as to not really be an abstraction, it’s more an immediate reaction, and things like emotions and movements and so forth come and go without much if any sense of time or continuity. Things appear and disappear and rearrange and anything I’m not directly perceiving is not there as far as I’m concerned and was never there, things have always been as they are right then. This of course does not translate well into a language that embeds time and continuity into description. Most of it does, however, encode into long-term memory. And I can assure you my personhood is quite intact at those times, just because I don’t think about myself or time or really abstract about anything (even enough to identify objects, colors, etc) doesn’t mean I’m not there. I’m not — never am, not even right now — the sum total of my conscious rational thought processes, I am many things that are not deliberate or conscious and those are very real and important parts of me, always. And of anyone. People who spend all their time thinking abstractly (and I mean abstract as in, even knowing what “pencil” and “yellow” are are abstract) tend to be very attached to it, and very unaware of how much of their thought processes goes on beneath that all the time, and very afraid of losing it, and very identified with it to the point where they feel like it is their very basis for personhood.

    WRT animals, I think all living things (not just animals) are persons in the sense I view personhood, including living things with no brains. Just because they are alien to humans doesn’t mean they don’t have their own structure and way of doing things and innate desire to survive and so forth. Human-centric and non-disabled-human-centric definitions of personhood are of no interest to me, but Singerian definitions of personhood are also of no interest to me.

  19. Amanda, this is a little or a lot off-topic but since you brought up abstract thought, could you please make me understand (OK, that might be a mission impossible, but could you try?) about abstract vs. concrete thinking? I’ve always wondered about it since reading that the autistics are not supposed to be able to do one or the other of these. Well that’s possibly as mythical as all the other things that we are not supposed to be able to do, but still it makes me curious which I am doing and not doing. I’ve looked it up and I still don’t understand it.

  20. Could you give examples? Someone on another forum told me that Law and Order (not so much the tv show) were an example. Like the laws were the abstract and the enforcement of them was concrete. But it still is not clicking. Sometimes everything seems abstract and sometimes everything seems concrete. Seriously.

  21. Abstraction is like when you look at an object, and you can say “This is a pen.” The idea of “a pen” is an abstraction from all pens. Even the idea of a color is an abstraction. Then things can get even more abstract, such as mathematics, especially advanced mathematics, is abstract on even more levels than just the naming of objects is. Sometimes less abstract forms of abstraction (like “pen” and “blue”) are considered “concrete”.

    What I’d consider concrete, are the direct sensory experiences of whatever the thing is, like sound, texture, color, etc, but without conceptualizing what that sound, texture, color, etc are.

  22. Just wanted to say that I enjoy visual presentations. There was one part I thought was more profound. “It’s not that someone’s calling me retarded, but it’s what they think retarded means.” (e.g.: ‘stupid’ or ‘slow’) I don’t even know that ‘stupid’ is so ‘wrong’ unless it is directly harmful in some way. I figure, if I tolerate all kinds of differences, then nothing to me is ‘stupid’ even if it is, by everyone else’s standard ‘stupid’.

    Blacks have long been using nigger amongst themselves, and like retard, it has a beneign meaning which is merely loaded with negative connotations by the public. Value subtractions. I wonder if they use it for the same reason I wouldn’t care if I’m retarded. I’ve been called “slow” by officials and teachers etc etc a bunch of times. My current boss is torturing me with hint-jokes like “you’re not invited…just kidding”. It’s not that someone’s calling them word X but it’s what word X is understood by them to mean. It’s partially revealed in tone and gesture, surrounded by laughter, anger, sadness or delight and other emotionally unnecessary loading. I guess it’s true that “words are not things”.

    Oh, I also liked you taking on Peter Singer. It should go without saying that I’m very opposed to his school of thought. I’m dealing with a few acquaintences right now who are arguing for eugencistic ideas. I’m going to be sharing this video…I want people to understand. I wish I could make a video too. I might. I’m of course different as an individual …but all the same, autistic. I’m still trying to learn how to use my camera (lol) but I am “slow” there. ;) I need to find a good AVI to MPG converter in particular for Youtube submitting in the size, rate, compression they want it in.

    Nice to finally “meet” you (in a sense). :) I hope you can soon meet me. *g*

  23. Pingback: Autism Street » Pediatric Grand Rounds: Edition 15 - Nov. 5th

  24. i hate when someone say oh you look normal .what dose normal look like .or i hate when someone thinks im lower f then i am and talks to me like im 4 years old grrrrrrrrrrr i could go on and on

  25. Hi,
    I just came across your site from your video dedicated to Ashley X and I’ve been watching all your videos and I really like them. I have a disease that sometimes interferes with my cognitive functioning and that varies a lot from day to day. People often ask me why sometimes I need a wheelchair and sometimes I need a cane. I also have a hard time in school explaining to my professors why I can do something one day and not do something the next. They think I am just being lazy. But my brain works differently at some times and at others. It is hard for me to explain it to them. But I think you do a good job of explaining this kind of thing on their terms. It’s hard for them to understand how someone’s brain might work differently from their own. The next time somebody asks me this, I am going to forward your videos to them. Thank you.

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