Monthly Archives: August 2006

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.

autism (stereo)types

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Someone posted on LiveJournal about supposed “subtypes” of autism, based on various celebrities, some of whom are autistic. [Edit: I was responding apparently to a work-in-progress posted illegally. What I say below was in response to what I saw, as written, not to all the things I didn’t see and didn’t know. It would still be my response if this were the finished product, and is still my response to the many finished products that look very similar to it. See comments for details.]

This reminds me of when someone asked me a question several years back, “Are you a Temple Grandin type or a Donna Williams type?”

I’m an Amanda Baggs type. As in, I’m myself. Not Temple Grandin, not Donna Williams, and certainly not a point on a line between the two of them as if they’re another “spectrum” unto themselves. There are more than two kinds of autistic people in the world, and even if there were truth in this stuff, I doubt that the first two major autiebiographies would be written by perfect representatives of each.

I wonder how many newly-identified auties sit there trying to force-fit themselves: “Am I autistic? Or am I AS? How high-functioning am I exactly? And am I more like Temple Grandin or Donna Williams? Or more like Andy Warhol or Albert Einstein? Can I really be autistic if I don’t fit the standard descriptions of any of these?” And how many auties end up totally alienated by this stuff.

Double standards.

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Has anyone noticed something?

When people in general do something destructive, and that thing is considered a normal part of what “people” (defined as, NT, dominant culture, etc, although of course other people might do these things too) do, then people spend a lot of time and effort researching and justifying why this thing exists. For instance:

Gossip is the human equivalent of ‘social grooming’ among primates, which has been shown to stimulate production of endorphins, relieving stress and boosting the immune system. Two-thirds of all human conversation is gossip, because this ‘vocal grooming’ is essential to our social, psychological and physical well-being.

(From Evolution, Alienation, and Gossip.)

Yet when other people (including autistic people) do something that may not even be all that destructive, may serve a purpose, etc, it’s considered a symptom.  And when we do (or even are imagined to do) something destructive, it’s considered twice as bad as anything destructive that non-autistic people generally do.

Case in point:  Violence.

Violence is close to universal among humans, I don’t care what designation they’ve got.  When autistic people (or any of a number of other people) do something violent (or even just something perceived as violent), people see it as utterly horrible, “for no reason”, and a sign of something about all autistic (etc) people. When non-autistic people do things that are far more violent, often towards autistic people (for instance, school bullying, murder, etc) out come the explanations of why these sorts of things make sense in the scheme of things, or the ways in which autistic people are asking for it.

So let me get this straight.

When we do something violent (or perceived as violent), it’s because we’re doing something wrong (even if there was genuine provocation, self-defense, etc).  And when other people do something even more violent to us, it’s because we are something wrong (our very existence is provocative and needing defending against, or something…).

Second Life

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my avatar on Second Life

So my computer finally has the graphics capabilities etc. for Second Life. If anyone wants to meet me there, my avatar’s name is Alfhild Briers. It looks roughly like the image here (you can click on the link to get the real image, if you’re having trouble seeing my images). Sometimes I’m in a wheelchair there and sometimes I’m not, but as a short fat bald woman I stand out regardless.

I’m still trying to get it more realistic-looking, but that’s what I’ve got so far. The appearance settings are complicated, and trying to get eyebrows or a mouth like mine (the only unibrows they have are the stereotypical thick ones that go straight across, not the thin ones that dip down… none of their mouths are trapezoid-shaped) is difficult and involves drawing onto a flat template that’s then wrapped around a 3-d face. Laura has also recently got an avatar there, but I’ll leave it up to her whether to say who it is.

Realistic avatars are unusual there. I’ve been warned several times that there’s a bit of hostility towards them. I’ve also had a lot of people patiently explain to me that I can look like anything I want to look like on Second Life. That I could look like anything I want, and still choose to look exactly like I look in real life, is confusing to a lot of people, but it’s true. I’ve even had a few people remark that I must be afraid of looking different than I do, rather than fine looking how I do.  I get a lot of comments (some positive, some negative), and I stand out not just for the parts of me that are unusual in real life but for the parts of me that are utterly ordinary in real life. (Being five foot two, while short in real life, is tiny on Second Life for a human, and being even a normal width is wide.)

Anyway Laura and I are planning to build some stuff for autistic people there.

Five weird things

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Five weird things about me:

1. I used to climb fences and “defend our territory” against neighbor cats by using cat postures, staring them down, and, if necessary, hissing or growling. I also used to “mark my territory” the same way cats do (indoors and out), and it always got blamed on the cats.

2. I love country music (weird for my geographic region and political persuasion anyway).

3. I can climb things easily and perch precariously without falling, but if you try to get me to walk on flat ground I get confused and may bump into things or fall unless it’s totally familiar.

4. I’m on Second Life with as close to an exact replica of my offline body as possible (this is quite definitely weird for there). (Might post more about SL sometime.)

5. I can wiggle my scalp.

(I wasn’t tagged, never have been, for anything, for whatever reason.  But this has been going around the Autism Hub for awhile now, so I’m joining in, tagged or not.)

Thoughts on having been born an autie.

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I turned 26 yesterday.  I am grateful that I was born in a time before anyone could pressure my parents in myriad ways not to have me because of my genes.  By calling them irresponsible, by accusing them of bringing more suffering into the world, by telling them not to perpetuate their defective genes, by telling them horror stories, by threatening to make insurance more difficult, by overt hostility and scorn, by telling them that only the weirdo activist auties actually prefer to exist but that “real” auties live lives of constant unmitigated suffering that is surely worse than never having existed, or anything else like that.  If I have kids, I will be subjected to that pressure merely because of being autistic (in fact I’ve had people tell me I should be sterilized starting when I was a teenager, and the only doctor I dared to talk to about possible pregnancy in the future showed me a display of sheer bigotry), and if a prenatal test is developed, even non-autistic people will be subjected to that pressure.  Here’s to those who fight eugenics in all its guises.

A real conversation I had today

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Setting: At a park I take my dog to, with staff and staff’s roommate. Staff starts off way at the other end of the park. As usual, I may jumble the order of the conversation, but what was said is approximately what was said.

Stranger: Oh… does that thing…

Me: (typing something unrelated to something else)

Stranger: Oh wow, so she types into that thing and it says what she’s typing.

Me: Yep.

Stranger: Is she deaf? Can she hear me?

Me: Yes, she can.

Stranger: How old is she? I’m betting she’s about 30.
Me: (typing while the two of them talk)

Staff’s roommate: I don’t know, I’m guessing around 25.

Stranger: I’m guessing around 30.

Me: 25.

Stranger (finally addressing me): Do… you… like… coming… here?

Me: Yes.

Stranger (again to me, evidenced by the very patronizing tone): Do… you… like… when… the… dogs… are… nice… to… you?

Me: Yes.

Stranger (back to talking to staff’s roommate): Do you take her out places like this often?

Staff’s roommate (inexperienced in these kind of conversations, but still uneasy): I think it’s [staff’s name] who does that usually.

Stranger: Oh, wow, it’s so nice to see what some people will do for each other, it lets you know there’s some caring people in the world. That’s so nice of her to do something like that for those people…

(Long pause.)

Stranger: It’s amazing what technology will let people do these days.

(Long pause.)

Stranger: What’s your disability, anyway?

Me: That’s a personal question.

Stranger: Oh okay… you know we’re born perfect… and we’re lucky to make it to 25 without something wrong with us… because it only gets harder…

Me: (thinking but not saying that I’ve been disabled from birth, gritting teeth, looking for escape route)

Finally I took my dog over to a different section that this guy’s dog couldn’t go in. I learned later that he went up to my staff and started asking her all kinds of personal questions about me, including what my disability was. She asked him if he’d asked me these questions, and he said he had but that I’d said it was a personal question, and she told him that’s probably all the answer he’s going to get then.

Note, this isn’t a matter of being ashamed or not-open about being autistic (in fact if he’d been a bit more observant he’d have seen the “Autistic Liberation Front” stickers on my wheelchair) or any other thing like that. It’s about not wanting to talk to patronizing people who seem to think they’re entitled to various details of my life no matter how they have to get them (and like my opinion is worth nothing in the matter), and definitely not wanting to give them what they’re looking for.

(Will stick categories on this when back to a computer that has full web functionality.)