Articles of Misunderstanding

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The “Articles of Understanding” that GRASP and Autism Speaks have written, are not about understanding at all. The only thing they will promote is misunderstanding on all sides.

Alison Tepper Singer’s article can basically be reduced to the old, “LFA bad. HFA good. Don’t you get it yet?” stereotype that looks good on paper if you don’t understand what’s behind it. I emailed her urging her to read Getting the Truth Out, but I never received any particular reply. Her argument shows no subtlety or understanding of the real issues, just the standard and fairly naive response that of course people would want to cure someone like her daughter, who she portrays in an entirely negative light (and with the standard litany of “shocking” descriptors). Not that portraying her in an entirely negative light is so surprising in someone whose only stated reason for not killing her (obviously very loving, by the way) autistic daughter is because she has a non-autistic daughter at home.

Carley’s, though, is little better. He also discusses those he regards as LFA, but seems to not have spent enough time around us to do more than repeat hackneyed stereotypes. Happy in our own worlds? Give me a break. Not that, given the hostility I’ve heard about (from several GRASP members) in parts of the GRASP community, towards non-speaking auties, most of them have probably never even met one of us. And that “white-walled room” on my website is my living room. I don’t really find the concept of so-called regression all that frightening (or all that accurate).

So the entire debate between the two of them, as regards those of us who have at some point or another been labeled low-functioning, is between “Low-functioning autistic people are bags of misery and dysfunction,” and “Low-functioning autistic people are ‘happy in their own worlds’.”

Sorry, but, both of you? It’s way more complicated than that, and portraying the divides in the autism community that way (as well as the divides in what people think of those labeled at some point as low-functioning) does a total disservice to all of us. And makes a horrible organization sound more “understanding” than it is, merely for patronizingly informing us of the existence of people who can’t speak etc. (trust me, lady, I’ve noticed).

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.

6 responses »

  1. Strange thing I’m noticing here. Anyone who is to be pitied is what I call “emotionalized”. They are all “so happy” or “so so sad”.

    And those who are respected are not. What if I were to say, “The chair of the National Autism Board, Ferna Glumwatt, is happy and at peace right now.” or “ABA therapists are fairly miserable and downtrodden but some are happy in their own little world.”, “Surgeons are usually happy in their surgical arenas.”. “The head of the board of radiology clinicians are often sad and in deep need of care.”. Most would say WTH? But for us? It’s a daily comment on my life and the lives of others with my condition/label/whatever that I can do without. It helps them to think I’m in a state of emotionalized drama so they can then play their feel good role of “the helpful helper” or “have helped” or “understander”. Ick! I want them to go away, fly a kit, read a book. I could do without their pity and their sick perverted “feelings”.

    Perhaps I need to write a book. “The poor little tiny ABA therapist that could.” or “the ugly curebie.” (and are all our worlds “tiny”, “cute”, and “full of poppies”?) Yes, I spend hours and hours a day in my cute vast rolling valleys of poppies and daffodils. (ok, some days I do but it’s for half an hour at a time thank you., other days, it’s usually just thinking about the idiots at work like it is with most people but perhaps I’m a tad more fixated on it :D)

  2. I keep having shivering nightmares too sometimes of the lady who would caress the side of my cheek ever so lightly and say in a sweet downy shrill baby voice “I understand”. I felt like picking up my tray of oatmeal, throwing it in their face and running away. (but then that would have been just another “cute little meltdown” eh?)

  3. AMANDA PLEASE PRINT THIS ONE. OTHER HAD TEXT MISSING. THANKS.

    I didn’t want to read the second article, the Singer one.

    I kinda thought the GRASP one sounded sort of OK until it was pointed out the illogic and waffliness and therapy-speak of it. And, hello, if you think we are all one spectrum, why do you want to further divide us up into an alphabet soup, then? And what about people who are a B in one part of their life and a Y in another? I am not the only one.

    So I finally read the Singer article. Eeeew. Someone in AFF forum or someone whose blog name I can’t remember, did a good takedown of this, by pointing out what abilities Singer had admitted her daughter has (hardworking, sweet, starting to communicate by voice, etc.), while saying she has no abilities. What gall she has, to say a person is “not abled” at all?!?!?! And what must it be like living in a house where they think that of you?!
    I am just guessing here, and I hope this isn’t view-from-above-ness… but IMO it would take someone very strong to maintain a nice personality in such environment. If that were me, I could see being full-on 24/7 bitter and bitchy by age 9, instead of just having some instances of acting out.

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