NPR show time seems definite now.


It looks fairly definite. They’re doing a show on All Things Considered tomorrow (Monday, June 26), and you can find the times and stations on this website.

Interviewed should be Michael John Carley, Jim Sinclair, me, and possibly others.

The blurb on the site says “Life can be difficult for autistic children. But imagine being diagnosed as autistic when you’re an adult. Many autistic adults say they aren’t hoping for a cure — just acceptance.” I want to clarify for anyone who comes here from there, in case it isn’t made clear on the show, that neither Jim Sinclair nor I were diagnosed in adulthood, but that they might be talking about Michael John Carley or other people who were interviewed.

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.

10 responses »

  1. We just heard the NPR story. Aside from the annoying use of “with autism”, we were surprised at the lack of frustrating moments such features usually have. They even explained why high and low functioning are not good labels. Waiting for Thursday now to hear what kind of comments the feature will get — may write one myself. Do you feel you were fairly represented (did they use enough of what you said to give a clear idea of what you wanted to say)?

  2. I’m going to have to listen to it a few more times before I remember what was on it, but as far as I can tell it wasn’t too bad, especially as shows like that go. The guy doing the broadcast wrote No Pity which was a history of the disability rights movement (minus the parts he didn’t know of at the time). So he’s familiar with disability rights as a concept, unlike most reporters, which is probably why the most serious kinds of obnoxiousness were avoided.

    Most of what I said in the conversation didn’t make it onto there, but I expected that, since it was fitting interviews with over three different people into a 15-minute show. What did make it into there was okay, but of course they edited out some of the clarifying nuance type statements, and I’ll probably end up blogging those eventually.

  3. Very nice. Considering how bad it could have been (in general), it was very nice. Thanks for the effort you put in to being a part of it.

  4. The “movement,” for lack of a better word, is still in its infancy. That they’re even trying to find their footing around the subject is to be commended. (Still, I was thinking cutting room floor.) :-)

  5. I really liked the interview and hearing the *voices* of those I’ve only read online:)

    I’m not dx’d and I cringe and get a sinking gut feeling about approaching a *specialist* again, these things have not gone well for me in the past.

    I do have a son who is dx’d with AS, another son whom I did not raise who has been dx’d with AS, Plus two other kiddo’s who definately have ASD related stuff…stims, Auditory processing difficulties, etc… I have difficulty with speaking up at support groups for my kids and saying that I have an ASD, perhaps because its not *official* or because I have been told I *function too well to be dx’d*. Argh.


  6. I just read the linked article by Mr. Sinclair about adjectives. I thought about the possibility of using the word “autist”. In that way the person is not separable from their abilities. Fortunately it also has a similar pronunciation with “artist” which has such a favorable connotation among society in general. Might this be a way to advance the acceptance of autists as a valuable part of humankind?

  7. Pingback: Autism Vox » Autism on NPR

  8. ok, tolerance acceptance education, thats fine. but trying to spin aspergers/autism as something that one should be proud of? i’m sorry, that is just going too far. it is a disability, and being proud of your defect is just a bit of self delusion. one should exist in reality ok? having a social deficit is a big negative when one has to exist in a human society. its just reality. it looks mean to rain on their parade and thats probably why no one bothered to point it out or speak up, but someone has to do it.

  9. Well.. a couple things here.

    One, people really are often proud of (or not ashamed of) their so-called defects, and it’s not self-delusion. But it’s not because they’re viewing themselves as “defective,” it’s because it’s how they are. Most humans are not ashamed of being human, even though it means their body doesn’t work the way other animals does (this has some positives and some negatives attached for humans, so one could say it’s a “defect” compared to other animals, or one could say it’s a “strength”, but in reality it’s really neither, it’s just what humans are).

    Two, in the oversimplistic worldview that divides things up into abilities and deficits in a very standard way, they’re finding that autism isn’t a social deficit, it merely causes those as a by-product, and seems to mostly be based on being able to do something non-autistic people can’t do. But, as I said in the radio interview (but was edited out), that’s not, I think, the basis for our lack of inferiority.

    But it’s fine that you said it. Frankly I was expecting truly mean responses, which yours is not. I just don’t agree with yours, either for autism or other so-called defects. Of course I look at these things as human variation, so I’m not going to agree with ability/deficit models of human variation in general. (I also don’t really see myself as “proud of” being autistic, but I certainly don’t view there as being anything inherently wrong with being autistic, and I certainly do see being autistic as a good thing, if you’re autistic. Being non-autistic is a good thing, if you’re not autistic.)

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