Author Archives: Mel Baggs

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

Back from AutCom

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I’m back from AutCom. It was both enjoyable and overloading. I plan to write a detailed account later.

The account may not be forthcoming for a bit, because it’s nasty-migraine-week (female hormone stuff) and I’m quite overloaded on top of that. Last night I managed to vomit and urinate just about everywhere but the toilet, and to go outside and get confused into immobility by the sheer number of blades of grass out there.

I’m still trying to write it but it might take awhile. Right now, even lying down and staring out the window seems unnecessarily overloading.

By the way, comments urging me overtly or covertly to view myself as in need of quacky biomed crap or as being in denial about some kind of preventable but ultimately lethal (and apparently pathetic) deterioration, are going to get deleted before they’d have been published. You know exactly who you are, and I do too, so don’t waste your time on me.

Predators

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(This was written sometime in 2005 or 2006, in response to a commenter known to me from the past who was attempting to convince me I was dying.)

There are people who have in the past tried to prey on the autistic community. Some continue to do so.

Some by verbal attacks. Some by stalking. Some by threats of violence and terrorism. Some by trying to mess with autistic people’s minds on purpose. Some by trying to find ways to take advantage of us sexually (imagining us to be like children in that regard, and some specifically target children and teens in the autistic community).

Such people’s comments will be deleted where I find them, and so far they are the only people whose comments I have deleted. Exactly one person has emailed me asking if they were such a person, and my answer to that person is that if they have to ask, the answer is no, and I would not have even considered that person when talking about this.

But this is also a warning, that there are people like that out there — some autistic, some not, some not and claiming to be. Not many, but the few are enough. Where there are people perceived to be weak, there are people who will attempt to exploit that weakness. Such people will find that I am not the easy target that I once was, or that they imagine me to be now. Such people will not receive a platform on my blog.

Comments from when this was a page not a post:


  1. November 7, 2006 at 12:43 am

    This is not a reply as much as a request. I am 33 and have a 6 year old autistic son. I adore him for who he is, a cure would take away the wonderful things that make him amazing. What I am looking for is advise. The world is cruel to him out of ignorance. He is non-speaking but we have no trouble communicating as far as his needs and he shows me eveyday that he loves me. Please tell me in your opinion what the most important things I can do for him to make his life as happy as possible. People pity me for having an autistic child and pity him for what they think he is not or what he is missing in life. I think pity is very offensive, I fell blessed to have been given him and I feel he is very happy the way he is. But I am afraid that I do not provide something that he needs mentally because he can not tell me. I hope that I have not offended you in anyway. Your blog is an amazing insight to me. Thank you!

  2. diana carr says:

    February 26, 2007 at 11:11 pm

    i am unable to email. tried for days to find away to email, just cant. please tell me how to e mail amanda. she has gotten me to study alot on autism. i like the knowlrdge i have learned. just need to see how to email. and can’t figure how.

    diana carr

  3. Stephanie says:

    November 29, 2007 at 9:29 pm

    Amanda…you have no idea how many eyes you are opening. I am a mother of 4 healthy children and know exactly how lucky I am that they are that way…but I am also so lucky to have people like you out there who are willing to go to such great lenths to show and teach other people…that everyone is unique and special. Just because we don’t all look, talk…act the same way, doesn’t mean a dang thing at all. Thank you again!

  4. Pi says:

    December 3, 2007 at 10:35 pm

    Wow, I just finished reading some of your work on instutionalization. My family has been going through mental illness treatment in one form or another for six years, since I lost my father to Zoloft. My mother (who was institutionalized) tried to help us understand, but it was all confused and difficult to comprehend. Your words helped me get a better perspective on what was happening while those of us on the outside waited. I still don’t know what we could’ve done differently, as some of her behavior was very unsafe. Having just lost my father to a mental illness, the least I was willing to settle for was keeping mom safe and at least giving her time to heal. The way you described your feelings helped me to understand a bit. Thank you for sharing your insight. For what it’s worth, those of us caught trying to understand the system, unable to access records, get information, or otherwise get involved in order to protect loved ones during episodes of extreme distress are at a loss and not allowed much control either. No one asked me about what I thought might help mom, and the only source of information was drugged.


  5. December 3, 2007 at 11:23 pm

    Yes, my mother said that one of the biggest problems she had when I was in the psych system was that she wasn’t educated enough or savvy enough about the system to figure out what was going on or how to genuinely help me.

    I really think there does need to be some place that people who’re experiencing severe distress or other things like that, or unable to function because of that sort of thing, can go. I’ve wanted that myself at times when I was clearly likely to harm myself in serious ways, but there were no options for me since the system would harm me in itself, maybe even kill me. The main problem is that the system is often less safe than outside the system. :-(


  6. December 4, 2007 at 3:50 am

    Yeah, and sometimes you find that while “alternative resources” (to the system) exist, they’re locally restricted and you can’t get in touch with them, for reasons of either geography or money. For instance, the Hearing Voices Project has a hotline in England, for people in a crisis because they’re hearing voices that upset them, but a friend of mine went looking for something like that the US last fall and couldn’t find it, when he was hearing a voice say things that upset him. (He eventually tried talking back to it on his own and it’s mostly gone away, but he would have appreciated some support, from people who didn’t define “support” as “stuff you full of pills.”)

  7. Ivan says:

    December 4, 2007 at 2:26 pm

    Pardon my cynicism……..

    perhaps our society won’t wake up to the fact that our psych system is “botched” up……and fix it……….

    because doing so just makes too much damned sense……and therefore must be vewy vewy complicated……..

    Perhaps society thinks that every sensible alternative costs money……….someone wants to keep us dumb these days………..and those of us who don’t fall for it……..can only do so much about it……..

    Ivan


  8. August 28, 2008 at 10:54 am

    MESSAGE FROM DAVID MIEDZIANIK: i wrote my autobiography years ago: i have aspergers syndrome: i’m bob dylan’s greatest bbc radio request writer: THE CONNECTION: ST MARTIN IN THE FIELDS: LONDON: i’ve always wanted bob dylan to do that song about me his best fan:

Normalizing murderous thoughts is not support.

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My mother wrote to me a few weeks ago to make sure I knew that she had never, ever, once, thought of killing me.

It was one of those surreal moments where I sat there and thought, “If I were non-autistic, non-disabled, I doubt she’d have felt the need to reassure me of something that should have been a given. And I think a non-disabled person would have been puzzled to get such a message out of the blue. I wish I was more puzzled as to why.”

And I quickly reassured her that I knew that, and had never even considered the possibility that she wanted me dead. She’s my mother. Most mothers don’t want to kill their daughters. I cannot imagine her, or my father, wanting to kill me. This is not something that enters my thoughts.

Yes, our family had a number of very rocky years for a whole lot of reasons that I won’t get into for the privacy of everyone involved, especially since all of us by now have turned over a new leaf in our various ways. And not all of those reasons even had to do with the makeup of our family, they had to do with circumstances. But killing each other? Not even close.

Certainly, my parents were not entirely up to dealing with what society had in store for a child like me. It’s not like parents get instruction manuals for “What happens when you have a child that psychiatry wants to lock up and throw away the key.” But they fought for what they believed was right at the time, with what knowledge was available to them.

They did this even when there were threats of taking me away from them and making me a ward of the state, and even when a particular institution decided to blame my mother for my so-called “childhood schizophrenia”. (This is what they called it when my parents tried to point out I’d been autistic pretty much forever — at the time, my proctologist was the only person who would openly state the truth, possibly because he found a bunch of professionals’ heads up my ass during that exam.) This time period did not make for particularly happy times for any of us, financially or emotionally, but a few staff were the only people who ever wanted me dead for it.

And yet I’m still occasionally getting emails meant to reassure me that I’m actually wanted in the world and that they never wanted me dead, never wanted me not to have been born.

What on earth kind of message makes parents believe they actually have to reassure their own children that really, seriously, they never even once considered killing us, and that really, seriously, we were wanted?

I can only guess it’s some toxic mix of the constant stream of murders and the messages that the press and various autism charities send out about the supposed frequency and normalcy of such thoughts. This isn’t support. Anything that makes my parents, and doubtless others, question such fundamental things about their relationship to their own children, and seriously believe I might think they’d had these thoughts, is not in any way support.

And, to my parents if they end up reading this: Really, seriously, I’ve never thought that you would have wanted to kill me. That just doesn’t cross my mind when I think about you. I’m aware that you love me. Thank you for reassuring me, but please be aware that you didn’t, and don’t, have to. Nobody and nothing should ever have made you feel like you had to reassure me of those particular things. Nobody should have put you in this position.

Storks

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I’ve been using a picture of a stork as one of my icons on LJ for awhile. The reason has nothing to do with babies (except perhaps, tangentially, those of us who have been stereotyped as black stork babies). I described my reasoning in what I wrote for AutCom, as part of an explanation of why flexibility is so important in services.

Storks do not fly long distances under their own wingpower. What they do, is catch hot air currents called thermals, and use them to assist their flight. This does not mean that they don’t do any work, but that they have to keep track of exactly where to concentrate their work, among a shifting mass of air currents.

Well… that seems to be how my mind works. There are all sorts of things equivalent to thermals: Perception, movement, communication, language, contemplation, etc. They’re always shifting around, and I can’t always be certain that something’s going to be there at any given time, or what form it will take when it’s there. I have to plan my life around this kind of unpredictability.

This does not mean that I am simply carried around without having to do any work, but it does mean that there are some areas where, for that moment, all the work in the world won’t do much of anything but wear me out, and other areas where the work I put in goes further. It also means that what I set out to do isn’t always what’s going to happen, and when it does happen it can be through a roundabout sort of route.

Storks suit me better than spoons, even colored ones, at any rate.

The dead hamster laugh

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[PLEASE READ THIS NOTE BEFORE READING FURTHER: Some Internet trolls have, for a long time now, been linking to this page in my site (rather than the front page) in a passive-aggressive manner in order to imply that I am some kind of monster who takes pleasure in others’ misfortune. If you have followed such links to this site, this note is, especially, for you. The reality is that I take less pleasure in others’ misfortune than the average person seems to. This page is not about how I am happy when awful events happen (because, I’m not). It is about the fact that I, like many people of many kinds of atypical neurology, have great difficulty controlling my natural facial expressions, either to add expressions that are not automatic or to remove expressions that are automatic. And that, also like many people of many kinds of atypical neurology (and even many of typical neurology who are simply able to suppress it better), I automatically smile and laugh not only in situations where I am happy or find something funny, but also in situations where I am uncomfortable, terrified, disgusted, submissive, nervous, and grieving. If I were that kind of monster, I would not even feel discomfort, terror, etc. in the situations I am describing, nor would I advertise my problem with “inappropriate” smiling on the Internet. Additionally, I do also (sometimes) smile or laugh when I am happy or find something funny. Those are just not the only situations I smile or laugh in, and this post is not about situations where I am happy. You will see, if you read the comments section, that I am far from alone among autistic people or other people who are not standardly wired, and that in some cultures it is even often normal to smile in unpleasant situations. (It is even portrayed by one woman in the film Mozart and the Whale about a group of autistic people, when she laughs uncontrollably when afraid of hearing about rape and lesbian sexuality, and later smiles when saying she is sad that someone has cancer.) I originally thought of writing this post when recalling a conversation with the father of an autistic boy who often smiled when he was upset, and was often misunderstood in the same way I have been.]

I was discussing the purpose of laughter with a friend last night. We were talking about how most of the things human beings laugh about, we’re really uncomfortable with.

I started talking about something I rarely discuss because it’s been used to make me sound like a monster before: I laugh, or smile, uncontrollably (not that I have great facial control to start with), when horrified or disgusted by something.

I know that this just puts me at the extreme end of an utterly standard primate behavior pattern: The fear grin. My brother calls it the “dead hamster laugh” because I did it when my hamster died. However, it’s often seen in a very pathological or even monstrous light, and so I don’t often talk about it.

I suspect, from the point of view of institution staff, it is highly unnerving to have a patient who never smiles except when hitting you, and who also smiles very wide when being screamed at or discovered doing something that they know will get them in trouble. I can even imagine the thoughts that were going through their heads: “This is someone who is manipulative, sadistic, enjoys hurting people, and likes getting into trouble. And when she smiles as we come into the room and see that she’s pulled herself out of restraints again, it’s a mischievous smile.”

I know they thought some of that, in fact, because they said it outright. The fact that I was smiling at certain times got under their skin in ways that other inmates didn’t. I made them very uncomfortable.  I even wonder at times if it didn’t contribute to their singling me out for especially bad treatment up to and including their attempt to kill me.
It doesn’t help that so-called inappropriate laughter is considered a sign of any number of pathological mental conditions, despite the fact that the “inappropriateness” is actually fairly standard for a large minority of the human population. My friend was commenting that if an otherwise “normal” widow stared laughing at her husband’s funeral, people would consider it shock or hysterical laughter. When most people laugh when a little afraid, it’s called nervous laughter. But when someone already judged to be abnormal laughs like this, it’s automatically pathological or else a sign that we’re some kind of monster who is actually taking sick pleasure in all these horrific events.

I smile when I have done something very wrong, and know it, and am horrified by what I have done.

I am likely to smile when I know someone is dying nearby.

I smile during all kinds of emergencies when someone has collapsed or is bleeding a lot.

I smile when people close to me die, including animals.

I smile during natural disasters, wars, genocides, and terrorist attacks.

I smile while watching people physically attack each other.

I smile while thinking about bad things about people.

What’s worse, this kind of smiling is longer-lasting and harder to control than the kind of smiling that occurs across my face fleetingly while I’m amused by something or having a good time. My mouth gets stuck, painfully so, smiling, or laughing, and I can’t do a thing to stop it. My control of mouth position is limited to begin with, but this totally paralyzes it in the worst possible position for the circumstances.

The reason I will never play the tape of my interview with Laura Tisoncik on institutions for anyone who doesn’t already know me well, is because it contains me laughing throughout the entire interview, both while I’m typing and while Laura is talking, nonstop, and laughing the most in response to some of the worst descriptions.

But what people don’t realize, is that I’m not happy, and I don’t find any of these things remotely funny. While I am sitting there smiling or laughing, my actual feelings are intense disgust or horror. There is no pleasure here, and it would be really nice if people realized that this doesn’t make someone a monster. It’s actually a very basic human (and primate in general) reaction that some people take further than others.

One Book Meme

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I was tagged for this twice, and finally finished it.

1. One book that changed your life?

I suppose Combatting Cult Mind Control by Steve Hassan. Despite many disagreements I have with the exact content and theory behind it, it helped me recognize some of the professionals in my life for what they were. It’s written by a guy who used to be a Moonie, then he used to be a deprogrammer, but found deprogramming too brainwashing-like in itself and became an “exit counselor” (um). He’s managed, despite many holes in the way he sees things, to accurately describe the effects of brainwashing in a way that a person who’s been through it could recognize it immediately despite nothing else getting through. At least in my case. This is not even my favorite book, nor one I have read often since, but I guess at one point it was useful.

2. One book you have read more than once?

I’ve read nearly all books more than once. I have trouble understanding them on first reading, or even second. Lord of the Rings might hold an all-time record though.

3. One book you would want on a desert island?

Something practical, like a survival manual. (Yes, I wrote this response before seeing the many others like it.)

4. One book that made you cry?

Beyond Bedlam edited by Jeanine Grobe. Too close to home I guess. It’s a collection of writing by women who’ve been in the psych system. Combination of poetry, fiction, personal stories, and political analysis, including the first analysis I ever saw of the negative impact of therapy on feminism. A quote from one of the chapters:

It must be inspection time again as the floors are getting mopped and waxed and staff is going crazy trying to cover their ass.

It must be inspection time again as we’ve all been given clean sheets and a blanket (it will disappear when this is over).

It’s kind of fun to watch staff running around in circles and trying to get their paperwork done and in order (probably hasn’t been done in months).

It must be inspection time again as we are all getting deliced and haircuts (any other time they wouldn’t care if the bugs were jumping off us, nor our hair in order). We all smell like disinfectant.

It must be inspection time again — only nice thing about it — we don’t have to eat oatmeal today and we’ll get real food.

Well, it’s time for the show to begin: the inspectors are here (let the games begin, first the tour, then the kitchen, and then comes us).

We know better than to talk or move from our chairs. If we do, there will be hell to pay later (I wonder what would happen if they knew the truth about this place).

Inspection team is leaving, we can move around now and talk but we better pray they passed or we’ll be sorry (someday, I will tell the truth about this hell hole and the ones that run it).

SOMEDAY!

From “The Silent One” by Myrna Renner.

5. One book that made you laugh?

Nearly anything by Terry Pratchett. A Hat Full of Sky maybe, if I had to pick one.

6. One book you wish had been written?

A book by an autie about autistic people that’s actually political, informed by at least something like disability politics and the like, rather than this long string of autiebiographies, self-help manuals, self-dissections, poetry (usually poetry that would never have been published if the person were not known to be autistic), and medicalistic textbooks.

7. One book you wish had never been written?

I’m oddly not going to go for any of my least favorite books. It seems weird to not want a book to exist just because you don’t like it.

So I think I’m going to have to say Autism: The Eighth Color of the Rainbow. Why? Because, despite the author’s best efforts and good intentions, it’s a book on how to communicate with autistic people by a person who has a great deal of difficulty understanding even a simple sentence by an autistic person, and will find hidden meanings from out of left field (I’ve described her as “so exaggeratedly NT it becomes a social deficit” before). The two autistic people I know (besides me) who were represented in the book view it as a misrepresentation of them and their lives — not a deliberate one, just an inevitable one. In short, a person who has immense trouble communicating with autistic people writing a book on “How to speak autistic” is not going to go well, and while such a book should be written, I at least wish it had been written differently. (No doubt if the author comes across this paragraph, speculations about hidden motives I couldn’t possibly imagine will abound. When I tried before to calmly correct the story of a friend, she not only got the corrected version wrong as well but figured I must be jealous of the friend. Another autie who’s in the book on the other hand was once driven to meltdown by her illogic, and she viewed this as “making an important emotional connection”. But the reason is, put simply, stunning levels of inaccuracy, nothing more, nothing less.

8. One book you are currently reading?

The War of the Ring edited by Christopher Tolkien. A bunch of J.R.R. Tolkien’s drafts of The Lord of the Rings, with commentary.

9. One book you have been meaning to read?

The Bible. I have read large chunks of it but I’ve never managed to get through the whole thing.

10. Tag five people.

Uh… Amorpha, Moggymania, Bookgirl, Jessadriel, Rarkrarkrark

I’m not even sure how many of them read this blog, but there you go.

Wow. Stuff about the anti-political nature of therapy.

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I’ve been trying to post this for awhile. I’m never going to finish going “Yeah!  That point is really important!” and detailing all sorts of examples of why, so I’m just going to post it as-is:
Been a long time since I’ve found anything on this. I was going around the net and found the following articles about the problems of “feminist therapy” as applied to actual practiced feminism or lesbian-feminism. I don’t agree with a couple of the articles on the nature of consciousness-raising groups (I share the skepticism of the third article), but there’s a lot of useful information about how therapy warps things to be individual rather than political. Even if you disagree totally with the other political stances in these articles, they contain a lot of useful information about the intrusion of “therapy culture” on activism.

Therapism and the Taming of the Lesbian Community

This I feel language encourages us to judge everything by how it makes us feel. If we go to a lecture or read an article on some political topic, therapism encourages responses such as, “The author seemed very hostile to me,” or “She made me feel very frightened.” Rather than encouraging us to evaluate the substance, therapism encourages us to examine how her words made us feel. This promotes a microscopic view. It encourages us to look at most events in terms of how one person’s behavior affects another person’s emotions.

I’m sure everyone’s seen one or more of my rants on “I-statements” and “feeling” being used to separate out who expresses their opinions “properly” and who doesn’t. Rather than allowing any looking at the situation as it is, this sort of thing makes feelings synonymous with reality and goodness and all kinds of things they’re not.

Therapism teaches us quite a different way to be friends. In the first place, one must take one’s problems to a therapist so as not to overburden one’s friends.

What the article doesn’t quite get into, is the idea that relationships are not always exactly equal in terms of who is giving and taking which things. Therapism makes it so that friends don’t actually have to do things for each other, there are professionals for that. It makes it so that if one person is assisting another person more at any given particular amount of time, this can be considered “co-dependent” rather than a part of the natural ebb and flow of a relationship. Aside from encouraging selfishness, therapy seems to encourage an incredibly superficial kind of friendship wherein if any major problems arise for your friends, you aren’t expected to help any in dealing with them, you’re expected to tell them to go to a professional. It also, as the article points out, discourages anyone but professionals from giving advice about how to deal with life so that some of these problems might not be ongoing.

And let us not forget about “safe space.” A major problem with these therapistic means of communicating is that they can be so damn manipulative. “Safe space” is perhaps the biggest manipulator. At one time safe space for lesbians meant space where we could show affection for each other without fear of heckling or verbal abuse. It meant space where we could dare to look like Dykes without fear of physical assault. This kind of safe space was particularly important to working class Lesbians and Lesbians of Color who did not enjoy the relative safety that academic communities offered white Lesbians. However, today the term “safe space” indicates something entirely different. It means safety from each other. As far as I can tell, “safe space” is now an environment where a woman can express her emotions or feelings without fear of criticism. Safe space is a good example of how therapism has taken away our ability to discern the appropriate application of political ideas—sometimes popularizing these ideas past the point of significant meaning.

I remember a “support group” I went to (more on support groups later) for people who were or had been in the psychiatric system. I was first off the only psychiatric survivor/ex-patient in the room, everyone else identified as a consumer. As time wore on, it became apparent that this group could and did involuntarily commit people from that room, and did in fact support involuntary commitment for some unspecified “Those People” in which I was included at the time.

Now note, involuntary commitment is genuinely unsafe. It doesn’t just “feel unsafe” to think about, it’s the sort of thing that could literally kill me, and faster than it would kill the average person. I react to confinement in certain predictable ways. Those reactions are reacted to by institutional staff in certain predictable ways that involve the administration of drugs that can easily kill me. The local institution in that area disregards drug allergies on a regular basis. Further, it, like most places of its kind, engages in torture, degradation, and all the other fun stuff that is not “safety” in any way shape or form. It separates inmates from the rest of society but sure does not help anyone in any way at all.

Nearly all of the women in the room at that point were people who stood no chance of being involuntarily committed, themselves, I should add. They were seemingly unaware of the genuine dangers their viewpoints posed to people. By dangers, I don’t mean dangers to feelings, but dangers to life, health, liberty, and safety. I was aware of every last one of those dangers.

And I reacted by screaming and running into a corner, knocking over something on my way to doing so. As I did so, I could tell the floor was dropping out from under me and I was now being regarded and dehumanized into the category of definitely low-functioning. As I hid behind a television rack, in actual genuine danger from those kinds of pronouncements, everyone else went around in a circle and discussed calmly how my “illness” made me behave this way (WTF?) and how “unsafe” I made each one of them feel. Only one woman said, “You know what, when I get pissed off, I do the same thing she does.” She was definitely in the minority. To everyone else, talking about something genuinely dangerous was “safe,” but my reaction to that was “making them feel unsafe,” and their feelings, calmly expressed of course, ruled.

This is also why I’m reluctant to sit around and pathologize human responses to dangerous situations. Nearly every person in that room reacted to me not as a person reacting understandably to a genuine potential threat, but rather a person whose reactions were part of a sickness called post-traumatic stress disorder that is somehow separate from who I am as a person.

As if, rather than being a human being who’d experienced a whole lot of nasty situations and reacted to them in the only ways available to me at the time, the experiences, and my reactions to them, were separate. Easy to categorize away. Boxed. Forgotten.

The actual meaning of sitting there in a room listening to people discuss something dangerous, while sensations flew through my head at lightning speed about the real-life consequences of the topic of the discussion, becomes lost in medical terminology. Flashbacks. Startle response. Paranoia. Anxiety. Hypervigilance. Mental disease. These experiences become, not part of me, but separate, not part of my opinions about the world, but embarrassing bodily functions like farts that are better off ignored.

Emotions, too, become pathologized and at the same time elevated in importance as if they create reality itself. Everything becomes about “how people feel” rather than about how things are.

When a lesbian judges everything in terms of how it makes her feel, she becomes very emotionally vulnerable. She cannot take a bold stand on anything for fear of being criticized. Or she cannot criticize for fear that the community will disown her. Although support and safety have always been important to us, our community used to be based on movement. Now, we are so “safe” we cannot move.

This is as good a description as any of the fact that criticizing people’s viewpoints or actions is now seen as a horrible act of “emotional violence” against that person.

Therapy and How it Undermines the Practice of Radical Feminism

In fact, the whole of life can be seen as one great psychological exercise. Back in 1998, Judi Chamberlain pointed out that mental hospitals tend to use the term “therapy” to describe absolutely everything that goes on inside them:

…making the beds and sweeping the floor can be called “industrial therapy,” going to a dance or movie “recreational therapy,” stupefying patients with drugs “chemotherapy,” and so forth. Custodial mental hospitals, which offer very little treatment, frequently make reference to “milieu therapy,” as if the very hospital air were somehow curative (1977, p. 131).

A decade or so later, with psychology’s major clientele not in mental hospitals but in the community, everything in our lives is translated into “therapy.” Reading books becomes “bibliotherapy;” writing (Wenz: 198), journal keeping (Hagan: 1988), and art are all ascribed therapeutic functions. Even taking photographs is now a psychological technique. Feminist “phototherapist” Jo Spence drew on the psychoanalytic theories of Alice Miller (1987) and advocates healing (among other “wounds”) “the wound of class shame” through photography. And although reading, writing, and taking photographs are ordinary activities, in their therapeutic manifestation they require expert guidance: “I don’t think people can do this with friends or by themselves…they’ll never have the safety working alone that they’ll get working with a therapist because they will encounter their own blockages and be unable to get past them” (Spence: 1990, p. 39). While not wishing to deny that reading, writing, art, photography, and so on might make some people feel better about themselves, it is disturbing to find such activities assessed in purely psychological terms.

For anyone who’s ever seen me rant about the use of “therapeutic” to refer to emotional or political situations, the above is a good description of why. Basically, this “therapism” has taken over mainstream American culture to the point where everyday situations are becoming more and more medicalized over time, and solutions of course, are more and more individual and less and less political.

I have often seen an honest conversation turn into a therapeutic interaction before my eyes. For instance, I mention something that has bothered, hurt, or been difficult for me in some way. Something shifts. I see the woman I am with take on The Role of the Supportive Friend. It is as if a tape clicks into her brain, her voice changes, I can see her begin to see me differently, as a victim. She begins to recite the lines, “That must have been very difficult for you,” or “That must have felt so invalidating,” or “What do you think you need to feel better about that?” I know very well the corresponding tape that is supposed to click into my own brain: “I think I just needed to let you know what was going on for me,” or “It helps to hear you say that, it feels very validating,” or “I guess I just need to go off alone and nurture myself a little” (1987, p. 47).

That’s a quote within the article from something by Bonnie Mann. It’s meant to illustrate how even our interpersonal relationships are viewed as “therapy” right now.

Another real-life story:

I went to a meeting that was going to determine some pretty significant things in my life, including where I lived, who controlled my services, and whether or not I would be forced to accept services from people who had repeatedly endangered me in a physical life-and-death sense. Again, something where nearly the entire agenda was either life-and-death or otherwise major, not minor or trivial, certainly not about my feelings.

Anyway, one of the things that kept happening, was the woman running the meeting (and the company that the meeting was about) kept trying to “validate” my emotions. I can’t remember the exact words she used, but they were comments like Bonnie Mann describes above. Ones that focused entirely on my emotions and not at all on the situation I was trying to fix. She seemed to think if she could just calm me down everything would be fine. And, of course, “I hope you feel heard by us.”

Needless to say this did not work, and I stated over and over that my problem was not my feelings, but the actual situation. And the situation did, to a point, get resolved, although I note that it only got resolved for me, not for any other clients who might be affected. And it is not fully resolved for me, I still have ongoing, preventable health problems as a consequence of that organization’s policies. But it sounded to begin with as if it mattered more to her that I reacted emotionally in the correct way than whether I survived or not, got to retain my apartment or not, quit being threatened or not. An exact quote from me during that meeting was, “If I wanted someone to take care of my emotions, I’d stay home and pet my dog.”

Psychology suggests that only after healing yourself can you begin to heal the world. I disagree. People do not have to be perfectly functioning, self-actualised human beings in order to create social change. Think of the feminists you know who have been influential in the world, and who have worked hard and effectively for social justice: Have they all loved and accepted themselves? The vast majority of those admired for their political work go on struggling for change not because they have achieved self-fulfilment (nor in order to attain it), but because of their ethical and political commitments, and often in spite of their own fears, self-doubts, personal angst, and self-hatreds. Those who work for “revolution without” are often no more “in touch with their real selves” than those fixated on inner change: this observation should not be used (as it sometimes is) to discredit their activism, but rather to demonstrate that political action is an option for all of us, whatever our state of psychological well-being.

Indeed. If I had waited until I liked myself to write about the ideas I write about, I would have had to wait until this past year or two. If I had waited until I was some pure description of emotional stability (whatever that might be considered), I’d have to wait even longer, maybe forever. I’ve written things about the value of all people’s lives while wanting to kill myself, and seriously contemplating doing so. I’ve seen that Sue Rubin has spoken out about torture at the Judge Rotenberg Center while utterly loathing large parts of her brain and body. This does not make self-hatred and despair good things, it just means that even in those circumstances people can do important things, and that waiting around to not experience those things might mean leaving important things left undone.

The Lesbian Revolution and the 50-Minute Hour: A Working-Class Look at Therapy and the Movement

But since the middle class rules, working-class lesbians are continually reprimanded for our “excitability” in meetings, while also being reproached for our failure to “open up” personally. This we generally prefer to do privately, or with good friends, or in meetings designed to handle personal reactions.

In that article, the author’s describing ways of shutting people out that can be on the basis of things other than class (she mentions race, she doesn’t mention disability), but she points out that she’s describing it in terms of class for the article since that’s what she’s most experienced with. So, a lot of the problems she’s describing are things I’ve encountered for reasons other than class, although class sometimes comes into it for me in different ways.

This discrepancy she’s describing is something I’ve been encountering for a long time: I act in emotional ways, but I do not sit around discussing emotions in the way people consider “opening up”. I don’t know if this is because of my cultural background, because of the fact that I’m autistic, or what, but it’s a definite difference between me and a lot of the sorts of people that get bothered about things like that.

I’ve never seen anyone pull those two things apart in quite that way before. I’d always wondered why it was that I could react in visibly passionate ways (and, yes, get chastised for it), yet always get told I was not opening up enough emotionally. Get told “We know what you’re about, but we don’t know you.”

Whenever I found out they were looking for very specific kinds of expressions of my feelings, my reaction was something like, “Why are you demanding something so personal out of me? That’s for my friends, not strangers.” But I could never articulate the difference between the emotions they got to see (integrated into the way I express things about certain ideas) and the emotions they wanted to see (neatly cordoned off into “I feel…” statements, I guess, and connected to things they could view as relevant to personhood).

So that explains being chastised simultaneously for being “too emotional” and being “not emotionally open enough”.

I can recall attending a meeting of a newly formed group at which volunteers were asked to facilitate. There was a short silence; then, a lesbian I knew slightly said (I am paraphrasing), “Well, although I don’t consider myself any more qualified than anyone else, if no one has any objection, I will volunteer to facilitate. If I offend anyone by my choice of methods, please let me know. I could be wrong about how I think this should be done. When the meeting is over, I will offer my criticism of myself as a facilitator, and I will welcome criticism from the rest of you.” She went on in this vein for some time, wielding the power which therapy bestows: for several minutes she kept all attention focused on herself, yet she used words which sounded a note of humility, self-disparagement. She was, in fact, rather authoritarian in her manner of facilitation. I later found out she was a therapist.

This lesbian also inadvertently made evident to me what makes this distinctly courteous-sounding mode of behavior so desirable to some womyn. She was the first in my experience to forbid direct confrontation between any two lesbians at a meeting. At first, I thought it was only more of the fear often evinced by middle-class womyn at any sign of anger. (They sometimes act as though we’re all about to pull knives.) When I saw that she also stopped all humor, I realized that it was simply emotion of all kinds that made her uncomfortable, out of control of the meeting.

Both of those paragraphs, again, sound a lot like things I’ve seen happening within assorted groups as well. And this really describes well how under all kinds of “I am nice” signals, people can be controlling, manipulative, authoritarian, and self-centered, while of course directing most of that to people who aren’t sending the same signals.

Also, a lot of this falls under the same category I’ve been noticing, whereby people who manage to pull off a certain variety of “courteous” get treated better than people who don’t. I’m usually in the “don’t” category. I recently ended up in the category of being considered “courteous” (which people didn’t realize was simply because I was too indifferent to a lot of their nastiness to get worked up about it) while someone else with an almost identical viewpoint to mine was not, and that was just as much a problem. It’s just one more way to split us into Good Auties and Bad Auties.

The “acting like we’re all about to pull knives” comment is familiar as well. People often react as if I’m dangerous or “out of control” (I suppose in therapy-speak, the phrase I loathe, “danger to self or others”) because of my opinions, emotions, or even perceived emotions that aren’t really there.

Hence, we now have thousands of lesbians who will sit down, in all earnestness, and say, “I am very angry,” in a perfectly serene tone of voice. (As the years go by, they grow more and more distant in their phrasing, as, “I feel some anger around this,” or even, “I have some anger here.”) The same womyn, while righteously defending the necessity of putting out their feelings, will level charges of aggression, divisiveness, and male-identification at lesbians who don’t need to announce that they are angry, because it is clear, from their every word and gesture.

…and where have I seen that before?

This is one reason I don’t fit in in support group atmospheres. I have zero interest in sitting around serenely saying “I have a great deal of anger issues over what I perceive to sort of be a return to previous ideas about something that looks a bit like eugenics” or something. And I can’t even begin to count the amount of times that someone has completely disregarded what I or someone else has to say, only to focus on the fact that we sound too “angry” — an accusation which can be brought on not only by being angry, but by talking about things that make them angry.

In the autistic community, this often takes the form of autistic people lecturing each other about social skills and the proper ways to do things. Because we’re already presumed deficient in “social skills” (which tend to mean, in these contexts, adhering to white middle-class therapy-culture social norms) it becomes easy to lecture us on the fact that nobody will ever listen to us until we communicate in a way that’s not only thoroughly unnatural to us (more so than language is already to many of us, while those who cannot use language at any particular moment are seen as even more vile in their/our means of communication), but based on an arbitrary set of social norms.

It’s not just non-autistic people who do this. Plenty of autistic people buy into it and have written all about a sanitized, “good”-manners-ridden, frictionless version of self-advocacy that is impossible for the vast majority of autistic people. Some have even gone so far as to say that if it’s not done like this, it’s not proper self-advocacy to begin with. Everything becomes about what is proper, rather than what will get things done, and even what is possible.

The author of the article has a great section, too long to quote, in which she points out that a friend is being classist, and the friend goes to her therapist, treats this as an “attack” on her, and decides to “take back her own power” by saying she had no right to “judge” her this way. Threw in a few genuine personal insults and one cruel but underhanded comment that deliberately hit a weak spot. She writes:

So my friends would approach our next confrontation having gained from therapy no knowledge of how to express anger (and certainly no experience). They would fall back on what skill they had acquired through their class experience and in therapy, for therapy and the middle class are the two places where expression of anger is presumed to mask some other emotion. They would do the familiar: state something cruel, actually make a deliberate attempt of meanness, thereby depleting my power in their eyes, so that I needn’t be taken seriously. They would feel less pain because now I was the one hurt. Because they feel bad when I yell, and I feel bad when they are cruel, they delude themselves that we are doing the same thing.

This seems to be a common reaction to bringing up ableism, as well. I at one point recently, trying more than I really had to in fact to be polite but firm, bowed out of a conversation in which I was being expected to do and say certain things specifically because I was disabled. I gave the reasons and put it in a broader context. I then watched as people stood around and comforted each other about what a horrible attack they were enduring from me, periodically throwing thinly-veiled insults (to the effect of “Bad Autie, not like the Good Obedient Auties, must be a mean-spirited person in general who just wants to cause trouble and isn’t particularly generous of heart”, etc) in my direction.

Since consensus requires that every person be satisfied (the American Dream), that no one be declared the loser of the vote (a horror to privileged folks), the pressure brought to bear on the dissenter is formidable. In the past, if the middle-class lesbians dominated all decision-making, winning simply by outnumbering, we could protest or leave. Now, any objection to losing a vote is childish, because everyone theoretically has the chance to stop any vote from going through. The fact that dissenters must carry the onus of having selfishly stopped the entire group’s process is not officially acknowledged.

I’m familiar with consensus mainly through Quakerism (which has its own class-related problems that can make attending Meeting nearly unbearable for me at times, but that’s a different story). In which there’s a specific shared cultural understanding around the use of consensus, that can be quite valuable in some situations. But I’m very familiar, even in that situation, with the pressure on people who block consensus, particularly if, like me, they’re fairly low-status or even assumed not to understand what’s going on.

And consensus isn’t right for every single situation. It works when you’ve got a particular relationship to each other and to a shared set of assumptions about the world, but it doesn’t work so well in the situations being described in the article

Hand in hand with the disapproval of direct interactions between lesbians at meetings, crit/self-crit serves to allow abusive or manipulative lesbians to say anything they wish in the course of meetings, knowing that it will not be tolerated for them to be directly confronted. The same womyn reign during the crit sessions. Another working-class dyke friend has recounted to me her abuse during these sessions, as her audacity in offering real criticism of middle-class lesbians’ exercise of privilege was consistently punished by a responding criticism of her offensive style. She was castigated in vague therapy terminology about how attacking or unconstructive she had been. This was supposed to silence her protests against oppression. If she couldn’t learn to do it right, she simply had no credibility. Yet, what middle-class dykes said about her never had to do with realities like privilege and oppression (or even with the content of her criticism); only that some delicate spirit experienced her honesty as being hurtful.

Again. Run. Into. This. All. The. Time. I don’t know how to say any of this better than she’s saying it right there. Raising particular important points becomes “attacking,” and the entire focus of everything becomes protecting the feelings of the person who “feels attacked”.

And… there’s way too much in that article that I could quote and go “Yeah she’s saying something really important here!” in a zillion different way. Overall the points had me going “Yeah. Yeah. Exactly. I’ve seen this (or even, been brainwashed to engage in the wrong end of this) and I’ve never known how to say it.”  (Also some stuff that had me going “Yeah but I wish she’d also discussed the difference between what she’s talking about and [insert-thing-here].”  Like, the difference between “I’m okay as I am and I don’t need to grow and change and have a total right to be selfish,” and the sort of “I’m okay as I am” that auties tend to mean that is quite different in meaning.)  So I’m ending here and hoping people will go read and think about it themselves.

AutCom update

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I’m going to be presenting as part of a panel on “Real Supports: What Helps, What Doesn’t”. I was told the other panelists’ names by Phil Schwarz (so blame his bad memory, not mine), who told me that the other panelists are: Phil Schwarz, Barb Moran, and a guy whose name he couldn’t remember. Four of us total so far.

I already know Phil. I don’t know Barb Moran (except in the “friend of a friend” sort of way), but I’ve written snailmail to her once in the past because of a great chapter she did in the book Sharing Our Wisdom. I look forward to hearing what she has to say about supports, especially as a fellow institution survivor who writes very well about the environment in those places (which, although 30 or 40 years apart from my experiences, differs little from the environments I saw). I also look forward to meeting the other guy even though I have no clue who he is since Phil didn’t know. All I know is he uses FC.

I do not look forward to the fact that I’m now writing a mini-speech at the same time as trying to pack and make arrangements for my animals. Laura thinks I have lost my mind and says pretty soon she’s going to pretend not to know me, presumably in the middle of a meltdown. But I’m oddly looking forward to this all anyway. Regardless of the fact that, if I had any hair, I’d be tearing it out in a few days.

Autism National Committee conference

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I’m going to the conference of the Autism National Committee next week. It’s on Friday the 8th and Saturday the 9th, in New Hampshire. I’m going with Kathleen Seidel, who’s being very nice by driving me. :-)
Anyway, if anyone’s going and wants to meet me there, let me know.

If you want to recognize me (not in any particular order):

  • Likely to be wearing green-tinted glasses with light purple plastic frames. Although I might be wearing over the top of them (rendering them invisible) a pair of black plastic sunglasses. At any rate I’m going to be wearing glasses of some kind the whole time.
  • Fairly stereotypically autistic-looking (not that this will distinguish me from other auties, but it’s unlikely you’ll mistake me for NT).
  • May or may not be in a wheelchair at any given time. If I am, it’s got a headrest on it.
  • Female (you can tell if nothing else by the large breasts).
  • Bald or nearly so.
  • Likely to be wearing the “Lights On Shirt” from this page. That’s the one with this picture in the middle, with the full shirt pictured here. It’s very purple. The artist, by the way, is autistic, and the shirt is designed (by someone else) largely for auties.
  • I’ve got one of those unibrows that is two thicker eyebrows that dip down in the middle to a slightly less thick fuzzy patch. Think Frida Kahlo if this idea confuses you.  (Larry Arnold claims this is how he recognizes me in pictures.)
  • And some scattered chin hair and such that’s unusual for women not to shave off.
  • My mouth is kind of trapezoid-shaped when open, and it’s frequently open as a default position. (One friend says she uses that, my nose, and my eyebrows as a pattern to recognize me by. I honestly don’t know whether that mouth shape alone would distinguish me from a lot of auties.)
  • I’m a bit short (5’2″, look even shorter because I bend over when I walk) and a bit fat. And white (some white people think I look Hispanic, most Hispanic people are sure I look white).
  • If standing, I may be attached by a long, flexible object of some kind to someone else as a navigational aid. (Again, not sure this will distinguish me in a crowd of auties or not.)
  • Plenty of pictures of me on Getting the Truth Out.
  • If you see someone holding and/or playing with blue rhombus pattern-blocks, it’s almost undoubtedly me, but I don’t have them out all the time (I do carry a few with me).
  • Probably wearing a fanny-pack.
  • Definitely communicating by keyboard, although may make other noises, some of which may sound like words and some of which may not. (Not is more likely than words, at least around people, but you never know.)
  • May be wearing a blue soft helmet with a rainbow-colored clasp. I hope not. I’ve already done enough brain damage recently. (Seriously, ever since a meeting a few months back with a particularly jerky guy — which meant lots of head-banging — I have felt seasick whenever I walk upright. Avoiding head-banging has been a very high priority lately.)
  • May be wearing a hat with a brim, or a baseball cap. (I often do in unfamiliar places.)
  • May be frozen in place at various times. If I am, I may still be able to hear you, just not respond too well.

So if you recognize me somehow in all this, don’t hesitate to ask whether I’m Amanda or someone else. ;-) If I don’t respond, hopefully someone near me will tell you. I hope that’s enough details that anyone who wants to (and who can see well enough to use them) can use at least a few of them to try to pick me out of a crowd of auties.

One thing I am looking forward to a good deal about this conference, despite AutCom’s drawbacks and the apparent overloadingness of the surroundings, is that AutCom is according to several people I know a place where a wide variety of autistic people are represented. As in, I’m not going to be the token non-speaking autie (or one of two or three at most), I’m not likely to be the only “disruptive” autie, I’m unlikely to be either the most obviously autistic or the least obviously, I’m unlikely to stand out much at all in fact. And it’s been a long time since I’ve not stood out even among other auties — I’m looking forward to it.

Genetic Outlaws

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Confessions of a Genetic Outlaw

EUGENICS BY DEFAULT. This emerging public consensus in favor of eugenics is not the product of any sort of reasoned debate. There has been no referendum, no debate in Congress, no move to amend the Constitution. It’s emerging from the collective force of countless decisions by loving and caring mothers and fathers, in consultation with conscientious medical professionals who are using the truly miraculous and astonishing discoveries of brilliant scientists plunging deeper and deeper into the mysteries of life. These people are not intentionally practicing eugenics in order to create a perfect master race. They are simply trying to alleviate potential suffering and protect the quality of the lives they are bringing into the world.

But it is time for us to acknowledge the collective effect of these private decisions. Do we truly endorse the implicit message we are sending to our disabled brothers and sisters—that our commitment to diversity does not extend to genetic diversity? We need to confront the disconnect between how we see ourselves—as an enlightened, liberal society committed to fully integrating people with disabilities in all sectors of life—and how people living with the disabilities we would identify for extinction must see us.

MAKING CHOICES .Perhaps if we honestly confront this disconnect, we could start providing some more informed support to those loving and caring parents who are making difficult decisions in the offices of those conscientious medical professionals. We might tell them that studies show that people living with disabilities judge the quality of their own lives much higher than others expect. We might share with them stories of the incredible grace, joy, and happiness that many parents of children with disabilities experience. And when we hear about parents driven to despair by the difficulties of caring for a child with a disability, we might start asking ourselves how many of those difficulties stem from the erosion of a societal consensus about our responsibility to care for the most vulnerable segments of our society, rather than from the disability itself.

I would not want scientists to stop delving into the mysteries and wonders of the human genome. I am glad that I knew my son had Down syndrome before he was born. If one of these scientists found a “cure” for my son’s Down syndrome, I almost certainly would give it to him. But I will admit that I would pause beforehand. I would think hard about this real-life conversation between a teenager with Down syndrome and her mother. The daughter asked her mother whether she would still have Down syndrome when the two were together in heaven someday. The mother, taken by surprise, responded that she thought probably not. To which her daughter responded, “But how will you know who I am, then?” And I would also think hard about whether the world would really be a better place without my son’s soft, gentle, deep, almond-shaped eyes.

This is someone who seems to have only passing acquaintance (if that) with specifically disability rights perspectives, but I’ve heard stories like hers before. Again and again. Of parents being shamed, humiliated, and pressured by doctors not to have children that doctors (in their so-called “wisdom,” which has been proven over and over again to be dangerously incorrect when compared to the views of actual disabled people) deem defective or of “low quality of life”.

That clearly and absolutely means children like me. And children like most of us, in the end, because this sort of thing never stops at the first people they target. Once all the most obvious things are screened out, there will be a new, tighter definition of what’s normal and what’s defective. And so on and so forth.

And parents who decide to have children like us anyway, will indeed be “genetic outlaws”, and may in the future even be forced rather than merely bullied and coerced into not having us.