What You Know

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I found this among a bunch of poems and stories I’d written. There’s a number of people it could be applied to, some famous and some not. It applies strongly to some people who are said to have an extreme intuitive knack around autistic people (and to the staff who said she had a knack for the developmental disability field — if you’re reading this, it’s about you, too):

You drop a ball and you know it will fall. You push a door and you know it will swing. Your experience tells you these things.

You push and you pull on a knot in my chest. You adapt to my every motion or action, like some kind of giant Hydra standing in my path no matter where I look or what I do. Thinking vanishes. There is only reaction. To you.

When I was a kid, I was in a hallway, and a bully came out of nowhere, all legs and arms. She would not let me go in either direction. No matter where I went, she blocked me, making loud noises. I thought I would never get away from her.
You’re like her, only you are more skilled than she is. Your blocks are more graceful and fluid, they look less like blocks, more like an oscillating dance of firm and gentle redirections.

I may look defiant, or compliant, or cute, or happy. I may look a lot of things. But you are there, you are influencing every one of these things.

You are said to be a miracle worker with a gift for working with people like me, and a deep understanding of us. Much of the world mistakes control for understanding, even love. So do you.

So tell me, if you understand so much, how did the ball feel about being dropped? How did the door feel about being pushed? What did they feel before they were dropped and pushed? What were they doing with their days? How do I feel about your presence in my life?

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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.

13 responses »

  1. Yep. Ironic how one time I was told that I wasn’t doing my job supervising correctly. I was “letting the (younger kids) lead me around” like they were in control. I guess I suck at it myself. (but maybe not to them). I suppose there are definitely times when adults are violated…when other well meaning adults think an adult is “dangerous” and “like a child”. Goes back to “feel free to make mistakes”. Although, I’d hope in a very serious life threatening/clear/present danger etc that perhaps a watchful eye/quick hand is used in that one and only one instant…maybe a tad more but certainly _nothing_ like what you’ve described. Sounds stressful and also familiar (to bullying days).

  2. I had a physical bully in childhood exactly like that.

    I’ve been puzzling for years what I could have done, and it’s becoming more urgent for me, because that could just as easily happen to my daughter as it did to me.

    The rest – I try as hard as I can to let my son be who he is, while still getting the important things done (getting him to the bathroom to be cleaned up as quickly as possible when needed, keeping him away from the stove when it’s on, keeping him away from the lower oven when it’s on), and respect his person. Respect is very important, and allowing each of my children to maintain their dignity is very important.

  3. This post — esp. the bullying part — rings relevant for a lot of reasons, esp. for the violence and the violent intent beneath the bullying.

    Bullies are far harder to teach to have “better behavior” than Charlie, I have to say.

  4. I was verbally bullied for years at school. I was very withdrawn, my reposnse was to sit and stare at the wall and not react. I was screaming inside. They would say things like “if I was her I’d kill myself”. It worries me that my sons will also be bullied and I will do everything I can to help them understand that if they are bullied they are allowed to retaliate if they can. I couldn’t, I only wish I could have done so.
    I know with my autistic son that there could be numerous incidents when I could have made him upset if I’d have gone along with what was expected in mainstream society. Making him sit with other children in a circle to play “pass the parcel rather than letting him run round a room, for example. Or demanding that he looks at me when I’m talking. Or making him eat his food with his fork or spoon rather than his fingers. Or returning him to his bed instead of letting him do his puzzles. Or making him do hours of therapy instead of realising he’s probably tired of structured activities after nursery.
    I’ve got a long way to go and I’ll never presume to completely understand either of my children. But I do understand that whilst I can speculate about what they are thinking, or experiencing, I can never know for sure.

  5. Today I was working with this one autistic boy who also has some form of syndrome. His teacher aide person kept reminding him to put his tongue back in his mouth and stopped him whenever he flapped his hands. I felt uncomfortable about her nagging him because I hate it when people do that with me, but I didn’t say anything. However, when I was with him and she was just watching from the side, I didn’t pay any attention to where his tongue was and when he flapped his hands, I flapped back (which fascinated him, and he would flap some more in reply). He had been trying to stim every couple minutes when she was stopping him, but after I let him flap as much as he wanted to he seemed to need to do it less.
    I also did a similar interaction with him in the pool, when he’d splash and I’d splash back. But from what his teacher aide said I think she did that with him when she went swimming as well.

  6. I would hope to be forgiven for treating people unlike me as Unpeople. Especially considering, as many have already said, that I was bullied a lot when younger, specifically when in High School. I can understand only a hair, but I think that is a place to start. Thank you for writing. Thank you for your videos. You are helping me not to view autistic people as concepts or what they say as symbolic, the list goes on. I would love to hear from you. You are a fantastic writer, I’m envious.

  7. I have been working with Autistic children for 7 years and read about Autism advocacy at the beginning of this journey. Made me feel bad about the way we, as “behavioral tutors” control and “help” these children become accepted within the social norms. I also provide audio therapy and color therapy. Can anybody tell me if this approach is as bad as behavioral modification?

  8. there comes a point where acceptance and tolerance are far more valuable than “help.”

    i was bullied constantly. It never ended. i was bullied by my boss and lost my job after the bullying resulted in PTSD. The organization didn’t care. My rights were nowhere to be found. The union did nothing but talk.

    They say it is harder to care than to cure. It’s a saying, and it doesn’t work literally. It means “It’s harder to accept and understand than it is to expect the person to change to suit social standards.”

    i’m sick of changing for them. It’s time they change for me.

    http://dysamoria.com/blog

  9. “You’re like her” I do what she did, but I don’t know what else to do. The young man that I work with , I always thought that we exchanged sun light to shadow , but your words seem so accurate.
    I “block”, and I know that I do, and I filter and interpret(try) and explain(try)- but what can I do?

  10. This post gave me a whole new perspective. I always knew I didn’t like ABA, but I wasn’t very sure why. Duh. Thanks.

  11. My daughter has ADD and I’ve found that Ettina’s strategy works best with her too. We call it “getting the monkey out”. When she’s allowed to take frequent breaks to jump around and doodle, the whole task goes better than if we try to make her stay perfectly still all the way until it’s done. Doing the latter may work at first but after “re-directing” her a couple of times, things go down-hill really quickly and often results in us having to give up on it completely that day.

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