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.

Disability-Institution Metaphor in a Dream

Standard

I’m not normally a big fan of overfascination with dreams, whether in the traditional psychoanalytic sense or otherwise. This is probably because I was once so fascinated with dreaming (which I could control) that it was more interesting and real to me than being awake was. Which is a dangerous way to live. Since realizing that, the only control I’ve generally attempted to exercise is being able to wake myself up or change the course of things in the worst parts of nightmares. Aside from that I let my brain rest and do its thing instead of overtaxing it while I’m asleep, and I also usually consciously decide to forget my dreams in the morning rather than think about them all day (I can do either depending on whether I want to remember them or not).

But occasionally my brain turns out something with a downright interesting plot. Last night I had a fairly bad dream (I’m sure it’s what other people would call a nightmare, but I have long had a fairly unusual sense of what is and isn’t a nightmare), the plot of which was a surprisingly good metaphor for disability-related institutionalization (and I’m sure things of this nature actually happen to people in real life, too, although probably not the specific details). This is not a typical dream for me in several respects, but it seems to be a variation on my institution nightmares (which are infrequent lately).

Keep in mind, I don’t know much legal terminology about crime, I know very little about how court works (I’ve only been in a courtroom once or twice, for much more trivial matters, and always for other people, not myself), and the dream no doubt reflects my total lack of knowledge in that area.

I was watching someone being tried in a criminal court of some kind, for something along the lines of, doing something to help along a bunch of murders, but not actually committing them. That person was there, and the one surviving would-be victim was there. As they presented evidence, I realized that I was apparently the mass murderer in this case.

This was, of course, news to me. I haven’t killed one person, let alone several. My initial impulse was to believe they were lying about me, and that I had never done anything like this. But it did not seem like they were lying. (I don’t remember any words in the dream, the information was just being transmitted in some more direct way.) And the way that that surviving would-be murder victim feared me did not seem feigned in the least bit.

Which was weird, because I didn’t remember doing anything. But even while I didn’t remember doing anything, they showed a bunch of videotapes I’d supposedly made (along with the guy who hadn’t actually killed anyone but who had helped me kill people, or something) that clearly showed me pretty sadistically murdering a bunch of people. (I’ll spare the details, but they involved torture.) And it was clearly me, and what I was doing to them was clearly some pretty heinous killing.

I kept thinking that I hadn’t done that, but that I hadn’t done that was totally at odds with the evidence everyone was presenting against me, including stuff that even I thought showed that I really had somehow done this. I started to question what I remembered about myself, and wonder in what circumstances I could do something that memorable and not remember it. It seemed that they were probably right about me, and that there was something very wrong with me, on a moral level, because only a monster would do things like that. Most of this, I wasn’t thinking this with extremes of feeling, it was more of a sickened, sober reflection. But the weird fact remained that I did not remember doing it, and it’s the sort of thing you should remember doing.

I began to wonder whether I was in the wrong body or something. I also began to wonder how on earth they would believe me if I claimed to know nothing about all this, given that probably even someone who had done all those things would be trying to deny it if they could. I kept looking at the person I had apparently almost killed (that was on videotape too, but he got away) and wondering what on earth it must be like to be in the room with me then, and how he could stand it. I wondered, if I had really done these things, how anything I could do from then on could ever render me an even halfway decent person. I thought about what the people I had killed, and their families, must have felt about me, and couldn’t find a way to disagree, if I really had killed them.

Some sort of conclusion was being reached about the guy who was being tried that day — I can’t remember if he was innocent or guilty. They were then saying that I’d have to stay in jail until my own trial, which would decide whether I’d be in prison for the rest of my life or not. I sat there, still wondering whether I’d done it or not, and how on earth they could conduct any sort of proper trial if I didn’t know.

Then I woke up. I was not afraid, but I was certainly relieved to find that my memory had been correct, and that I had never done anything like that.

Being in, or being sent to, a disability-related institution is a lot like that. Only there’s no trial, at least not in my case, and usually no actual crime. (When there are hearings, from what I’ve heard from people who’ve been through them, they often do go roughly like I was describing: Even if the person believes something, everyone else’s beliefs about them take precedence. I personally was often held without a hearing and without being advised of my right to one.) But the weird mental twisting and warpage of reality, as well as being confronted with the “evidence” that you are or have done, something you are not or never did, until you begin to believe it, is very reminiscent of what happens in there.

“It’s on purpose. Really.”

Standard

I came up with this post yesterday, but was not feeling great so I couldn’t do the new-word-generation required to turn it into a blog post.

I’m working on a video that deals in part with what disabled children often think about what’s in their futures. While I’m not likely to include much of what I’m about to write in this video — it’s a bit tangential — some of the stuff I was coming up with for the video reminded me of it.

In The Me in the Mirror, Connie Panzarino talks about growing up with spinal muscular atrophy. She was told things in physical therapy like “You can move your legs, you just won’t.” She has a long memory — back into babyhood — and describes her life starting at a very young age. And, among other things, she became convinced that she could walk and just didn’t want to enough. She thought of herself as different from other physically disabled children she knew, because she believed that she, unlike them, had this secret that she really could walk and one day would once she decided to.

It’s important to note, about her and about what I’m about to describe about myself, that in a less ableist society, disabled people would not be likely to end up thinking this way, any more than most people (other than kids who’ve watched too much Superman, and adults who’ve read too much New Age garbage) think they could fly if they really tried. It’s not “only natural” to believe these things, it’s a product of growing up in a society that really doesn’t take people like you into account, in a big way. What I am about to describe is not pretty, is not desirable, and was not fair to the disabled people around me. But I was a kid, kids think things like that in societies like this one. I’m writing this — and a lot of other things — because no kid should have to grow up thinking what I did.

Anyway, I can remember the time period when my abilities started shifting around. When I say shifted around, I mean like someone came into my head and rearranged everything while I was asleep. I can’t remember if it was gradual or sudden. I don’t know how much of it was truly the loss of certain abilities, and how much was the loss of appearance of certain abilities that had been only tenuous and illusory to begin with. I do know I gained other abilities during that time period, that I’d never shown any remote talent in before. I also know I gained awareness of certain things I did, and could not do, at that time, awareness that I did not have before. And I know that some things really did vanish. Basically there was a giant shuffle taking place in my head, beyond the usual shuffling of puberty.

At some point, I convinced myself that unlike other people, who could not help being like me, I was different. I was better. (Told you this wasn’t very nice or fair to others.) I was only being like me because I was choosing to be an individual. Others like me were only being like me because they couldn’t help it. I tried to distance myself as far as possible, including from people who were in reality far more capable than I was at a lot of things. I, unlike them, could cease to do certain things, or start doing others, any time I wanted. I just… never seemed to “want” to.

This was backed up by, among other things, shutdown. I would experience a longing for shutdown when I was overloaded, and there it would come. This must mean that I controlled it and could will myself not to. Even though I couldn’t. It did not cross my mind that having an extreme longing for shutdown is kind of like an extreme longing for sleep: It’s a biological need expressing itself as a “want”, and if you manage to put it off for any length of time, biology will take over.

While this gave me a false sense of control, it also meant that I felt guilty a lot, and as if I was a horribly selfish person (in ways other than I was actually being selfish — such as by adopting this belief system, which is truly very self-absorbed). Who but a horribly selfish person would choose to flop on their back and wave their hands and objects in front of their face while other people around them “needed” them to be doing something different? Who but a horribly selfish person would delay an entire group of people by freezing in place while overloaded, and force everyone around them to try to figure out what was wrong? Who but a horribly selfish person would lose control of their body in all the myriad ways that I did all day every day, forcing other people to deal with the consequences?

Because I did. There were a number of things that were simply too painful to think about before I realized I didn’t actually cause them.

The time that being fed a combination of chocolate and espresso beans meant that I ran around wildly and then shut down in both movement and comprehension so far that I was sent to a neurologist in the aftermath.

The amount of time I spent staring at nothing, doing nothing.

The fact that school and language were both incomprehensible far more often than not.

The fact that I acted like, and felt like, I did not understand things, only to understand them far later (“must have understood all along”).

The fact that I spent most of my time either doing repetitive movements, not moving at all, absorbed in the sensory experience of various objects, or thinking about one topic and only one topic.

The fact that I spent a lot of the time not thinking in the usual sense of the word. (These days, I’d consider it thinking, but it’s not what people are taught thinking is.)

The fact that I couldn’t get my mouth to say much, if anything, that was in my head, and often couldn’t even get the thing to move at all.

The fact that I spent much of the time babbling nonsense unrelated to my thoughts when I could get anything out.

The fact that there was only a tiny amount of stimulation I could tolerate before everything went haywire.

The fact that I was in excruciating physical pain all the time and frequently reacted to it.

The fact that I did things like flop on the floor, run away screaming, make certain kinds of motions, and hide inside and under things, spin around in circles a lot, that nobody around me was doing.

All of these things and more troubled me greatly, not least because I thought I must be doing all of them on purpose, behind my own back, subconsciously, or something.

This, by the way, is why it’s a really good idea to discuss, and discuss often and accurately, being autistic, with your kids, even if you think they are too young to understand. They will come up with far worse explanations than anything you could possibly say to them.

Anyway, I believed that I could stop these things any time I wanted to. I believed this all the way into institutions (at least part of the time), despite the evidence that I could not. I decided that I must really want to be in them if I acted in the ways that got me put in them. I decided I was the most twisted, selfish, and bizarre person on the planet. Nobody knew this about me, I came up with it on my own, although plenty of people reinforced it along the way without knowing it. It was my worst secret and I dreaded the day that I would be capable of telling it and put on the spot. Everyone around me who acted just like me couldn’t help it, but, I was convinced, I could, and that made me both better and worse than them.

It became worse after a doctor harnessed my echolalia and echopraxia to get me to act certain ways that were actually out of conjunction with who I was. I said before that I don’t feel trapped in my body, meaning I don’t feel trapped simply by appearing disabled. By the time that guy got through with me, I definitely felt trapped, because what he had me doing was so far out of sync with anything I was thinking or experiencing, further than anything every had been. When, even in the face of all this, I acted from things like overload and incomprehension that were not going away, when I slammed my fists into my head over and over, when I didn’t understand what was going on, when I still couldn’t communicate, and yet this guy was considering me “much improved”, my mind twisted into more knots than it ever had been.

Nobody should have to believe that they are, consciously or subconsciously, causing themselves to be autistic. I happened to fall into the clutches of a psychotherapist who was a holdover from the old psychodynamic-approach days. This. Did. Not. Help. To put it mildly.

But this kind of bizarre rationalization can only happen in a world where it is made bad to be autistic. It’s not that the truth I wasn’t facing was such an awful truth, it was that this truth was made awful by the way autistic people are viewed and treated. By the fact that I was not being offered any true guidance or assistance that would have helped me. By the fact that there was no roadmap and the only roadmaps I had, told me I would be institutionalized the rest of my life and that this was the only fate possible for people like me (unless we could be miraculously cured).

There is no reason that people should have to believe things like this about themselves (both that some aspect of themselves is horrible, and that they themselves are the ones causing it). But it is disturbingly common that people do.

What happens when you ignore power relationships.

Standard

I’m not feeling the greatest again today, so here’s another post I found in my archive of drafts. I’m not at all sure when I wrote it:

My mind is currently in a rather boggled state. I’m reading an old review of Irit Shimrat’s book Call Me Crazy, in the Women’s Review of Books. Call Me Crazy is about the mad movement in Canada, and it’s entirely by people who’ve been in the psych system.

Here’s a quote from the review by Sheila Bienenfeld:

As a psychologist who for several years (eons ago) worked in a psychiatric hospital, I had some trouble with this seeming wholesale dismissal of psychology and allied professions. It was a bit of an injury to my professional narcissism. But one of the motifs of Call Me Crazy is that Shimrat and many of her fellow “survivors” feel that in their times of personal crisis they were treated by psychiatrists and psychologists, social workers and nurses, as incompetent or simply bad: their value as human beings was derided and their opinions dismissed. My feeling of being discounted and unfairly stigmatized in this book parallels what Shimrat and her colleagues often felt as patients.

Okaaaaaaaaaaaaaaay. (I had to stare at that last sentence several times over, and try not to laugh, and stare at it and stare at it and try to get it to make any more sense, and it didn’t, so I’m writing this.)

Am I to assume then, that Irit Shimrat and her co-authors locked Dr. Bienenfeld in a small room and would not let her out until she renounced her profession? Did they put her in a building where her every movement, statement, and feeling was noted and controlled by anti-psychiatry activists who repeatedly put pressure on her to stop practicing? Is she unable to practice her preferred profession or even state it openly for fear of housing, educational, and job discrimination? Do the police watch her more carefully when they find out that she is a psychology professor?

Are there a constant stream of articles in “reputable” newspapers that imply that violent criminals tend to be psychology professors? Does Bienenfeld lack any sort of standard recourse when Shimrat publishes her views on people like Bienenfeld? Does Bienenfeld have to worry, when she publishes opinions like this in a book review, that people will not take her seriously anymore, and may even discriminate against her?

Would it be possible for most people to truthfully relegate Bienenfeld’s views to a relic of the seventies (even though they’re being expressed in the nineties) and totally dismiss what she has to say on that basis? Is psychology treated like a joke by people with the real power? Would Bienenfeld have to struggle to get a book published about her views on psychology and keep it in print? Would it be close to the only psychology book out there, and then fade into obscurity almost as soon as it was published? Does she have to constantly have to remind people she’s not a cult member?

She got it right when she talked about ‘professional narcissism’. The things I just described have happened to the people who wrote the book. All she did was pick up a book and feel insulted by the fact that they took issue with people who had, and almost undoubtedly abused, power over their lives. I see no parallel between Bienenfeld’s experience reading Shimrat’s book, and Shimrat’s experiences at the hands of people in Bienenfeld’s profession.

This is an excellent example, though, of what happens when people do not take note of power imbalances. Being an inmate in the psych system, or even an ex-inmate or the sort of person most likely to become an inmate, is nothing whatsoever like being a psychology professor who dislikes a book written by ex-inmates of the psych system. This is a common mistake, though. Shimrat and her co-authors experienced threat to almost everything good about their lives (and sometimes their lives themselves) at the hands of people in the psych professions. Dr. Bienenfeld got her feelings hurt. I know where my sympathies lie on this one. Some people will go to great lengths to act as if power relationships don’t exist.

Psychodynamic “acceptance”

Standard

I’ve been sick today, so mostly resting or reading in bed and on the toilet etc. I’m rereading Let Me Hear Your Voice, masochistically enough.

I found an interesting point towards the end, that shows the context in which a lot of people could misinterpret the idea of accepting an autistic person as autistic (and not just those considering themselves opposed to acceptance for that matter). The author — who believes in “recovering” children through Lovaas-style ABA combined with other stuff — points out some similarities in many of the psychodynamic ideas about autistic people.

Basically, a lot of them — regardless of what they think the innate cause of autism is — consider that there is a non-autistic child inside the autistic child, and that child needs to be shown love and acceptance, and anything less than that will prevent that child from “coming out of their shell”. Parents whose kids don’t “recover” are then blamed for not “accepting” their children enough. She describes this in terms of Bettelheim, holding therapy, the Options Method, and other such practices. (She herself was drawn into a holding therapy cult at one point — cult being her word for it, not one I’m imposing.)

So, when a lot of parents hear about acceptance, there’s a good chance they’re hearing echoes of that kind of crap. Which has never sounded all that much like acceptance to me, since it’s acceptance of a person (the “normal child inside autism”) who doesn’t actually exist. And when they hear autistic people saying that parents need to be more accepting, they’re probably actually hearing those echoes of Bettelheim even though they’re not really there. (Such as Kit Weintraub’s bizarre set of accusations against autistic self-advocates.)

Of course the problem is that the counterpoint she sets up against this is just as bad. It’s all about how she’s going to drag her kids kicking and screaming into the world of normalcy, and treating their autistic behavior as horrifying and purposeless and to be extinguished, and so on and so forth.

Both “sides” of this look incredibly medicalized and pathological from where I’m looking.

It’s very difficult to say something like, “No, I’m not saying something from either of two extremes, nor am I in the middle. I’m way off to the side in some other direction entirely.” People want two extremes, or they want (if fashionable enough) a “spectrum” between two extremes. It seems difficult to write something and actually have it read without imposing a black and white category on it, or else a gradation of grey between black and white, when really we may be talking fluorescent purple or dark green or something.

Just for reference.

Standard

I maintain a blog. I reply on several blogs. I reply on several forums. I belong to several mailing lists. I make videos, which is pretty time-consuming with the equipment I have. I am trying to build a simulation of an institution on Second Life, as well as help maintain the Autistic Liberation Front property over there. I help maintain a website. I am trying to get through a difficult written interview for a research study. I am trying to write something offline (what that is, at any given time, varies). And I have a life offline, not to mention a greater need for both sleep and time doing nothing than most people.

I rotate between which of these things I’m focused on. Sometimes I don’t read mailing lists for months at a time and then pop up on them and post or read a little. Sometimes the same with all the rest of these things. Sometimes I rotate rapidly between two or three things. There is no way I can do all of these things at once. Most people are only exposed to me in a small number of these locations, and many forget (or never notice) the rest of them exist at all.

If you see me inactive, or less active, at any one of these things, don’t read anything more into it than the fact that I am busy. I’m not forgetting people, hating people, afraid of people, or anything else that people read into it. That’s when my absence is actually occurring, and not just people failing to notice that I’m actually there (which happens too, for some reason I can’t figure out). Sometimes the simplest explanation — busyness, and having less energy than most people to begin with — is actually more real than all the weird things people can imagine up.

There’s such a thing as coincidence: The other day, I was very busy at something else, fired off a post or two on one place, did a bunch of other stuff in other places, came back to that place in a day or two without even remembering the posts I’d made, and found that all hell had broken loose in my absence and that topic had been locked. I pretty much ignored it and continued posting there whenever (a) I was capable, (b) I was free, and (c) I was interested in and had something to say about the topics (which was pretty much every day).

Now I’m hearing that some people think I stayed away on purpose (including the day or so I was gone doing other stuff) because of the subject matter. The idea that I do have other things going on in my life doesn’t seem to have been considered as an explanation, but I can assure you it is the only explanation there. There are other times I stay away from places for the same amount of time, for the same reasons, and everything runs smoothly, and people don’t notice that I’m away. A hyper-selective sense of cause and effect is a strange thing.

Other times I really am disinterested. I’ve been skimming a lot of blogs and stuff lately (the last few months) because they just don’t seem all that interesting to me. Not because I dislike the people, just because I can’t get myself interested in whatever they’re saying at that point. I’m assuming they’re interesting to other people. And other times I’ve picked something else up and something ends up shifting. For instance, since recently going back to a forum I’d rarely posted on for awhile, I cut back on a few others. Sometime in the future I have no doubt I’ll be leaving that one alone and going back to the others and doing most of my posting there. I certainly can’t post everywhere at once, or do everything at once.

I even do this with friends, including my closest ones. I keep in contact with one or two and then I can’t keep in contact with others, so I rotate. So, if my friends can deal with it without reading much into it, surely various forums/lists/blogs can. And if anyone thinks staying away from a place for a day, or merely posting less, is a sign of something, they should see all the interesting and pretty even-keel places I only post at once in a blue moon.

Spiritual teachers, and who they are.

Standard

Edit: The person meant something different, based on thinking I meant something different, and so forth, but I’m leaving this post anyway since it may be useful.

In someone’s response to my post on spirituality (on another blog), they seemed to get the impression that I did not believe in spiritual teachers or mentors. I guess I hadn’t mentioned any (or not explicitly), and had mentioned some people who tried and failed to fall into that category. But actually I do believe such people exist. The trouble is that far more people are trying to sound like such people, than actually are.

This is not to say that a person cannot learn a lot from people who are trying to sound like such people and aren’t. There’s a lot to be said for learning what not to do. But as far as directly learning positive things from people, that’s something different.

I’ve personally never had a spiritual teacher who had a title in that area. I know some exist, but I’ve never met one who had the word reverend, swami, guru, rabbi, lama, etc, around their name. Nor have I met one who is a transpersonal therapist, or for that matter a therapist at all. Nor have I met one who traveled the world giving seminars on spirituality, or who sold tons of books on the topic, or who advertised themselves in general (or were advertised in general) as a very spiritually evolved person, or who was heavily involved in new age pseudo-spirituality. I’ve rarely met one who spoke in any way stereotypical of such people.

This is not to say I’ve never had one, even many.

Within the branch of Quakerism I practice (Quakerism itself, for reference, being a branch of Christianity dating back to the Protestant Reformation, but often distancing itself from other Protestants), there’s a belief that anyone can be called to ministry, not just one person who is picked as a minister. This means that on worship days, you go to the meetinghouse, and you sit silently with everyone else and pray. If someone believes they are inspired by the Holy Spirit to speak, they do. If not, they keep silent. Some meetings can go without anyone saying anything.

There’s always the question, of course, about how much of what is being said comes from people’s egos, and emotions, and all kinds of other stuff like that. One of the purposes of doing such a thing in a group, is so that kind of thing can be hashed out. That depends often on the composition of the group though, whether that happens, and how often that happens. In a group that’s going off track, Quaker meeting for worship can sound like a bad group therapy session. And given that many people join Quakerism more for its reputation for political activism than for its religion, and given the immense class and race privilege of many Quakers, that can happen sometimes. The clerk of the meeting I used to attend and am still a member of, used to remind everyone, “Remember, Quakers are officially called the Religious Society of Friends, not The Loose Confederation of Political Activists.”

But what it means when things are going right, is that the real wisdom tends to be amplified and the ego stuff tends to fall to the side. That means that all sorts of ordinary people who happen to go to meeting, can end up serving as spiritual teachers. Although, also in well-running meetings, it’s emphasized not to exalt the person for saying whatever they have said, but rather to exalt God for allowing the person the ability to perceive what to say.

Which means I have learned a lot from a lot of total strangers who happened to attend Quaker meetings, who I don’t always even know well enough to tell apart, but who said things that were important for me to hear at the time.

The spiritual teachers that I’ve actually known personally, have tended to likewise be ordinary people, and specifically not people seeking a position of power or fame for their religious beliefs, and specifically people who were adamant that confusing them with God in any way was a Bad Idea. None of them filled rooms, and none of them had a glow around them (and most of them, like me, took steps to avoid people who did do that). None of them were particularly fluffy, all of them were down-to-earth people whose spirituality was incredibly practical and based primarily in the real world. None of them encouraged me not to think for myself, or to take their word for things without evidence. None of them guaranteed I’d find everything they had to say comfortable. And I learned a lot from them, too.

And of course, in a somewhat different sense, all people can be learned from spiritually, just like all aspects of reality can, if you know where to look. But as far as people who directly spoke to me about spiritual matters, I have in fact had spiritual teachers, but they have rarely been the sort of person anyone would expect.

I survived my first female exam ever.

Standard

This may not seem important (and if it’s TMI, skip reading this post), but I’ve been dreading this exam for years. I have a strong aversion to anything being put inside my body, through any orifice at all, that doesn’t belong there. People used to have to get throat cultures off of me by waiting until I started screaming and then swabbing me. Proctologists (and, worse, having impacted stool broken up by hand) were a nightmare. I once threw someone across a room for trying to put a tube up my nose. I have not been looking forward to this, to put it mildly.

My case manager scheduled the exam to be an hour long (longer than usual, because it was my first time there and I’m known to do things like kick people who try to get into various body parts), and to start at 9:20. They were told we’d be a little late because my morning staff is taking a class. We got there at 9:30.

As soon as we walked in the door, the receptionist was sternly telling us we were too late for the appointment and would have to reschedule (this was strange and unusual, because we’d already made clear we’d be late, and so forth). They spent a further ten minutes in some amount of flurry. They talked to my staff, and not me, telling her we had to get out of there and come back another time.

It turned out the person scheduling (probably the woman who was most defensive and hostile to us) appears to have screwed up in a major way. They said we were supposed to be there at 9:10. They further had only scheduled me for 45 minutes, not an hour. And seemed to be implying that we didn’t know what we were talking about when we said 9:20 and an hour.

They wasted a bunch of time on that, and then tried to blame us for the time they lost arguing about that (pretending we only got there after we argued about it, etc). My staff is now very pissed off, because she said she’s never experienced that even when very much more late for these things, and she said she was pretty sure if I wasn’t disabled they’d have made room without a fuss.

The gynecologist herself though was very nice, and totally not bothered by a number of my less pleasant actions (including screaming really loud at the door), nor all that ruffled when I answered a question with something like “Uh, I was in an isolation room, I wasn’t paying attention to my migraine auras at that point in time”. We told her, I’ve been steeling myself for this for weeks and am not going to leave without doing the exam, basically. We told her about the scheduling screwup.

She did work my exam in, in between other patients. She showed me my parts in a mirror, which was kind of strange-looking, and reassured me that they were normal, which I wasn’t too worried about to begin with. I managed not to kick her during the exam (I concentrated all my energy on moving my legs downward, not at her, which got interesting when she then wanted me to “relax my legs”, I was thinking “Are you sure you want me to do that?”). Although my staff said I nearly broke her finger squeezing it. I made a fair bit of noise and flapped a lot but I got through it.

She said nothing seemed at all wrong down there from what she could see. She’s ordering blood tests for a number of things that either run in my family, or I’ve had problems with before (diabetes, anemia, cholesterol, etc). And of course she (like plenty of other people) is interested in re-testing my hormones because of my facial hair. (I know some people online have decided it’s high testosterone — I’ve been tested before, I did not have high testosterone or similar things then, and I’ve had facial hair of one sort or another since I was a kid. Hairiness is one tiny but externally obvious part of a genetic thing I probably have.)

So… I’m through.

That may not seem like a lot, especially to women who’ve had a lot of these before and also had babies and stuff, but it feels like a lot, since it’s new to me, I didn’t kick her (!), and I’ve been dreading this forever. I am now sore in places I was happily unaware I had until now, but it’s over.

Exploited? Hardly.

Standard

It’s come to my attention (and been commented in my blog) that some people appear to believe that I am being used by various people. I suppose it’s more comforting for some people to believe that, than to believe that I could make my own decisions about which people, and which viewpoints, I prefer to associate myself with.

(Although I’ve also been told recently that apparently being severely disabled should make me incapable of even knowing my sexual preference or deciding whether to have children or not, so go figure. Hint on that one: It, is, done, all, the, time.)

This weekend Kathleen Seidel and her family (including autistic kid) came by. They visited me and Laura Tisoncik on their way somewhere, just to hang out. They walked my dog to the park with me, then came back and took me and Laura out to dinner, then hung out and talked for a bit afterwards.

It always amazes me, actually knowing Kathleen, how much vitriol is aimed in her direction. I know her as a nice person who cares deeply about other people, including autistic people, and who is working very hard not just for her child but for other autistic people. I have a fairly accurate bullshit-meter, and Kathleen does not peg it in any way. She also drove me to AutCom awhile back, gave me a good deal of assistance in the hotel (even down to facilitation when I needed my arm held so I could type), and read my speech for me, which was all about how to best provide assistance for autistic people, what does and doesn’t work. We gave that speech there alongside three other autistic people, one also who uses typing to communicate (but can then read his words allowed), and two who speak.

There was no exploitation going on — if anything, I was using Kathleen for a lot of assistance that I don’t normally expect from people, that she gave uncomplainingly the entire time. She has in the past even driven out here to provide assistance and backup at crucial meetings with the developmental services people who had wanted me to live in a more restrictive setting. She came out and helped me fight that. She strikes me very much as a person who doesn’t just talk the talk, she walks the walk. And she’s also generous and funny and interesting as a person, hence the fact that we just hang out sometimes. Our relationship is one of equals, it’s not even the sort of mentor relationship I have had with Laura, it’s just we’re people who like each other and have fun talking, and also happen to agree on a lot of disability politics.

Similarly, I met Anne Bevington awhile back at a booksigning by Dawn Prince-Hughes. She later came by my house to help me out when my staff was sick. She’s a lawyer with an autistic son. She also wrote a letter for me, in her legal capacity, when I was facing that same threat of a more restrictive living environment. And also volunteered to come to meetings with the Regional Center in California as my lawyer. Again, she’s a very nice person, who does more than just talk about things.

And then there’s Laura herself. She sacrificed pretty close to everything else in her life for awhile trying to get me on my feet in early adulthood, when very few other people knew what to do. She gave me step by step instructions on everything, sometimes for 12, 24, 36 hours straight, because I had so much trouble moving (compounded by having to do so many things, and not getting enough food to eat) that I needed constant reminders on what to do with every limb. She did this because she was my friend, and because she knew what the alternatives were. She helped me get services, and she helped me recover from my experiences in institutions enough that I’m no longer in a constant state of flashback. During that time period, she put many of her projects on the side in order to assist me, and her health deteriorated from lack of sleep and stress. (Note: I don’t think this is a natural effect of a disabled person on someone, I think it’s a natural effect of supports not being distributed well enough, so that everything falls onto one person.)

And she did this, not to be a do-gooder, but because she cared about me and thought it was the right thing to do — she also helped me gain a lot of skills I didn’t have at the time, including many related to communication. She did not want me to end up institutionalized or, like she had been at points in her life, homeless. While these days our relationship is far more equal — we even live next door to each other, and we help each other out pretty close to equally, if alternately — at that point she was doing way more for me than most people would for someone. (Relationships don’t have to be exactly equal at every point in time, that’s kind of unnatural given how humans work, and it also becomes ableist as an idea.)

And yet people accused her once of “using” me too. They assumed that she wrote my website, and stuck my pictures alongside her writing. When really, if it’s in sheer amount of assistance received from someone else, she’s done way more for me in terms of actual physical tasks and stuff, and at a lot more sacrifice to herself. But people don’t see that, they just see one person who looks more normal, and one person who looks less normal, and they see the one who’s more normal exploiting the one who’s less normal. Even if the person who’s less normal comes up with an idea, it’ll be credited to the more normal person.

I’ll also note that I’m selective about who I allow to assist me with certain things. I don’t let people stick around just because they are (or think they are) doing something for me. I’ve had both autistic and non-autistic people try that, and I tend to stop talking to them where possible. The people I end up liking, treat me with respect, they don’t treat me like I’m beholden to them (and have to like them, etc) if they do something for me, they just treat me like someone they like.

And what’s happening here, is that, I’m apparently, supposedly, not really choosing my friends, or my opinions. Even when I am the one coming up with the opinions, other people are accused of putting those opinions in my mouth — that’s even if I influenced them, and not the other way around, mind you. Last year when there was a major conflict at my apartment complex, I sometimes had ideas, and then Laura followed up on them, but she was accused of leading me into these things even if I led her into them. They basically did the “Don’t exploit the poor little retarded woman” line and even if I was coming up with some of the ideas they wouldn’t believe it.

It’s strange to me, though. I’ve been exploited by some people, and those people are often held up as paragons of virtue. But when I form friendships (which by the way, for most of my life I didn’t have, so this is amazing, that I even have casual friends now) of my own free will, and relationships based on shared opinions, in which our opinions flow back and forth between us freely, with kind, generous, funny, cool people that I happen to like and who care deeply about the world and other people, who sometimes help me out and I sometimes help them out, and so forth, then they are somehow evil and exploitative, and I am somehow their victim. How can these people — who seem totally genuine to me, more genuine than most people, and their words match their actions in so many ways — be the supposedly hateful, vicious, cruel, neglectful, exploitative people that others make them into? Just because, I suppose, their (and my) opinions are unpopular.

So just for reference: I don’t want anyone’s pity for anything, but least of all for having the great friends I have, or holding my well-considered political opinions.

Of course, this reply will probably be considered useless. The person who brought up exploitation also said, and I quote, “I don’t care what Amanda Baggs tells us now under the influence of Neurodiversity. Her opinion means nothing as it it the words of someone who has never known what it is like to enjoy life without autism.” When I tried to argue, I was told that my points are “meaningless” and that I won’t ever know independence or freedom. Oh well.

And something totally different…

Standard

Today I discovered that while I’m not too keen on playing for audiences, I can play instruments to cameras.

This is messing around with a double-flute (a couple of pennywhistles stuck together at an angle), while a cat tries to interfere:

There’s only about four or five notes (plus another octave of same) on a double flute because you have only one hand for each pennywhistle, etc. And it’s not what I’m used to playing. But I had fun with it. One side can be played as a regular pennywhistle, and I do that more often than I play it double like I did in that video.

If the next video returns an error, wait awhile and try again.

That one is me playing a regular flute. I had a tiny bit of instruction a long time ago, and I was not too great at it. I certainly couldn’t improvise or anything. I picked it up more than a decade later (post-so-called-“regression” and all that, too, so with skills totally rearranged) and suddenly could play, but only if I improvised stuff. So that’s what I’m doing in that video. It’s not the only style I improvise in, but I don’t really pick the style as I’m doing it (nor even know the names of the styles), and I don’t know what it’s going to sound like until I play, so that’s what came out this time around.

These are the sort of skills I meant, a long time ago, when I was describing things I can do that I don’t generally do around people, and that tend to impress people (sometimes more than is deserved, by contrast with assumptions about abilities, and so forth) but that don’t actually make me any more capable, say, around the house or anything.

What people are “supposed to” be doing.

Standard

Well I may have been silly to sign up for NaBloPoMo, but I did. It’s this thing where you write a post every day in the month of November. The trouble is, I don’t want to bore people with vacuous posts made only to fill a quota.

But, fortunately for me, I found an old draft sitting around in my massive amounts of drafts of posts that I’ve never posted before, and it seems to have substance to it:

It’s finally all decided to make sense, one part of what’s bothered me for a long time in portrayals of living as a relative to a disabled person.

It’s summed up in statements like, “I didn’t get to be a kid because of my brother,” or “I can’t do the things I’m supposed to be doing as a young adult because I have to worry about my sister.”

I even had someone (if that person reads this, it’s not a big deal anymore, just an example) tell me that what people were supposed to be doing at her age (which was also my age) basically involved… something like finding oneself, hanging out with friends, not really worrying about a lot, and certainly didn’t involve taking care of someone like me.

For every stage of life, it seems there’s something people are “supposed” to be doing that doesn’t happen to involve the inconvenience of a disabled person plonked into the middle of it. If you take this to its logical conclusion, disabled people are not “supposed” to exist at all, because obviously our main function is to interfere with what non-disabled people (or, at times, people who are disabled in a different way) are “supposed to” be doing.

This kind of talk puts us firmly outside of basic human experiences, when it’s actually clear that disability is a basic human experience, in fact one of the most universal if you take this across the lifespan. But this notion that nobody is supposed to have to deal with anything as inconvenient as our existence (in a social world that has been designed purely for the convenience of other kinds of people) kind of absolves everyone else’s responsibility for dealing with us at all. It, in fact, makes things like disability-based segregation make total sense: After all, we wouldn’t want disabled people inconveniencing everyone else.

Of course, this is not as simple as just disabled and non-disabled. Some kinds of disabled people can say that maybe they don’t need to be forced out of various places, but some people do. Just imagine I’m including that sort of scenario in the rest of what I’m saying, though, because I’m having a hard enough time with language at the moment as it is without covering every contingency.

What we have, is a situation where non-disabled people have a fantasy about a “regular life,” which doesn’t really include things like disability, or anything else “inconvenient” to that life. Instead of being a part of that life, disabled people are automatically intruders upon that life, inconveniences. Burdens. There is a set of things people are “supposed to” be doing, and relating to disabled people is not one of them. Just not on the list of “supposed to”. So, we supposedly deprive everyone else of their rightful developmental stages, from childhood to adulthood all the way into retirement. Because someone came up with a biased set of developmental stages that somehow doesn’t include us or, I suspect, a lot of other people. People don’t get to “be a child,” “be a teenager,” “be a young adult,” “be a mature adult,” “enjoy their retirement,” around us. We take that away from them… supposedly.

Now from my perspective, this gets interesting. Because, well, I’m in this worldview the barrier. I’m the person who supposedly gets in other people’s ways. Somehow, the impact of me on their worlds is supposed to be earth-shattering. Yet, at the same time, I’m facing a world that is not designed for me, has zero place for me, half the time denies that people like me even exist or count as human, is as liable as not to permanently segregate people like me in institutions so that we’re not trouble to other people — is in fact so much not designed for me that every time I interact with it it finds novel ways of shutting me out. Everywhere. And I am not supposed to say anything at all about this. I am, in fact, supposed to shut up and quit being inconvenient. They see someone like me as one single barrier to their living appropriate lives, yet somehow the multitude of barriers I face, including possibly barriers to survival, because of their definition of appropriate, means nothing.

Meanwhile, I am working hard all the time just to keep up with an environment that is designed with only certain kinds of people in mind.

The amount of work I do, in fact, would probably be unthinkable to a lot of the people who imagine people like me to be lazy. (This is also true of poor people and probably a lot of other people besides disabled people, all of whom get scapegoated as lazy.) I am constantly adapting and pushing myself to and past my limits trying to keep up. (To anyone curious, my limits look like everything going totally blank and all conscious thought and movement stopping. They’re not the sort of thing that a little effort gets you past, in fact hitting them is usually a sign of too much effort, and hitting them occurs regularly.)

Disabled people have been part of families since families existed, and there’s plenty of evidence of families assisting disabled people since prehistoric times. While the idea of disabled people as burdens who give nothing in return is an old one, the idea of life in general as something that’s supposed to be easy and follow a particular developmental plan seems like a relatively new one.

I don’t know who invented the idea of a carefree childhood, but such a myth has never been the case for the majority of children in the world. I don’t know how many stories I have heard of teenagers raising their younger siblings themselves after the parents died, but these and other stories of young people forced into situations that modern middle-class American society considers “adult” are also probably more the rule than the exception.

But these days, we’re told it’s supposed to be different. Children who provide a lot of assistance to their parents or siblings, for any reason, are urged to believe they’re missing out on a proper childhood — proper childhood is apparently not supposed to involve any real work at all except for “chores” around the house. And if kids are doing the chores because the parents are unable to do them, then even if it’s the exact same chores they would’ve otherwise been assigned, that’s still supposedly wrong. I’ve been told I “missed adolescence” because of where I spent most of it, but in reality that period of life is only a period of total irresponsible abandon between childhood and adulthood, in times and places where people can afford for it to be so. I couldn’t.

Now I want to take a look at my actual family. (The following labels are ones that they themselves agree to. I’m not going to put everything in quotation marks, it’s just too confusing that way. So consider any of my usual criticisms of psychiatric labeling and such implicit in all this.) My father and one of my brothers have AS. My mother is bipolar. And I’m autistic.

I know how I am supposed to feel about this — according to various bits of popular psychology — by how I see people all over the place portraying it. I am supposed to feel cheated out of a proper childhood by growing up with a mother with what’s considered a severe mental illness, and I’m also supposed to be traumatized by it and very much wish that she would take medication (and possibly involve myself in NAMI and try to force her to take medication, and commiserate with all the other NAMI members when she won’t). I’m also supposed to feel unloved by my father, and like he totally lacks any empathy, and is in most ways defective as a parent as well. Meanwhile, I think I’m supposed to view my brother as a burden and an embarrassment and wish I had a normal brother in his place. In fact, forget just him, I’m supposed to feel that way about my entire family.

Needless to say, I don’t feel any of those ways about any of my family. They are just the ways that I am told I should feel, and other people are told they should feel. And of course, if someone already feels that way, their feelings should be “validated” as “natural under the circumstances,” and then they should go around reassuring other relatives that their feelings are natural too. And, of course, we should all go around telling anyone who doesn’t feel this way that clearly they didn’t live through the hell we did. Or something. Never mind that feelings, as usual, are the results of not just a situation but of our preconceptions about the situation, and that a lot of those feelings stem from some pretty bad preconceptions.

I did not grow up expecting that I was supposed to have only a certain kind of family, instead of the one I had. I grew up, in fact, considering myself pretty lucky, compared to among other things the relatives who really did have to do things like raise all their siblings from an early age, because their parents either died or were too busy to do it all themselves. I also knew that we had it a lot easier growing up than our parents did.

Aside from that, it never occurred to me to divide my family up between which members could be by some standards considered disabled and which couldn’t. Sure, great-grandma used a wheelchair, and her son was her live-in assistant, but that’s what family does. Yeah, my parents told me my brother was brain-damaged at birth, but he was just my brother. My parents’ idiosyncrasies did not seem all that weird to me because they were my parents, that’s just who they were. I grew up hearing stories of my eccentric and way-more-than-just-eccentric relatives and thought this was normal.

And it was. It never once occurred to me to blame the things I didn’t like about any particular relative (and there are things not to like in anyone, but I encountered things like molestation from a few relatives that are really things not to like, and those relatives did have assorted labels that I somehow never blamed this on) on a disability, or to divide them up into their “good” (non-disabled) parts and their “bad” (disabled) parts. I never felt cheated out of a childhood, despite experiencing some of the things that a lot of people seem to whine on and on about in that respect. (They always assume I’ve never experienced these things. I have. I think differently about them, and hence feel differently about them, than people who believe that there’s a particular ideal that everyone should have lived.) Sure I’ve griped about some of the really screwy events in my family but not in the “poor me I had to have disabled relatives and was cheated by it” sense.

Just as some parents believe they’re entitled to a perfect child (where perfect is defined by some pretty biased standards of perfection, at that), some people believe they’re entitled to perfect (again, pretty biased standards of perfection) relatives in general. That anything less than that is having something stolen from them, and a perfect excuse to feel sorry for themselves (and have this self-pity praised by therapists and sibling support groups and NAMI and the like).

I have to believe that this sense of what the stages of life are supposed to be like, and what people are supposed to be around for others to relate to, that somehow excludes the experiences of probably the vast majority of people on the planet, is relatively recent, and entirely mythical.