Monthly Archives: February 2007

I may not write or respond a lot for awhile.

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The recent media attention is, despite being non-hostile, quite grueling. I am very introverted by nature and am not used to this kind of thing — it feels like a necessary evil to get a message out, and I find myself wishing I didn’t have to be the messenger. I am not sure how much I will post in the near future. (I might post something about the story itself, though.)

Some disability models and stereotyping and such.

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A few conversations on a few different blogs recently have reminded me the degree to which many autistic people, and people involved with autistic people, are unaware of the various ways of viewing disability (as different from each other or even as existing), and the various stereotyping that exists.

The following links are by no means perfect (in a whole slew of ways), but they might provide an interesting start:

Models of Disability deals with the common frameworks people see disability in. Another one called Models of Disability. A Physical Challenge for the Media describes common stereotypes (they’re not really just media stereotypes) of disabled people. This page has even more stereotypes listed.

I’m posting this because every single one of these applies to autistic people and our portrayals in some way, but is not unique to autistic people at all. I see a lot of conversations that basically fail to acknowledge the other person is coming from a totally different model of disability (or even that more than one model can exist), or that take the form of “Oh, if you’re not an Inspirational Supercrip, then you must be a Bitter Cripple or a Menace to Society,” and so on and so forth.

How to recognize overload.

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I eventually want to do a video series of basically things I wish someone had shown or told me when I was a kid.

One really big one is how to recognize overload. I did have a few crude techniques worked out, but I didn’t know what they meant, or how to respond to them.

Basically, I carried certain objects that normally produced certain sensations. I had a necklace with piano wire in it that made soft bell-like noises. I had a scarf made out of multicolored criss-crossing ribbons. I had soft clothing.

The more overloaded I got, the more the soft bell-like noises turned into loud and obnoxious clanging that hurt my ears. The multicolored scarf became painful to look at rather than interesting. And the soft clothing turned to sandpaper.

So one good way to recognize overload, if you don’t have some other way, is to have some sort of object that you know what it’s like when you’re not overloaded. If it becomes more and more unbearable in some way, you’re getting more and more overloaded (and should probably find something to do about it).

(This would have been much better information than the information I got when I tried to indicate to an adult what was happening with the changes in the bell. She backed away and told me that there was something seriously wrong with me, and became distant after that.)

This twenty-four-hour support thing.

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Mr. Doherty is now writing about how “neurodiversity advocates” would never acknowledge the fact that some people need 24-hour assistance. Even though some have told him flat-out that they receive such assistance, this does not seem to register.

There are usually somewhere between 4 and 6 hours of a day when I do not get assistance, and I would easily qualify for 24-hour assistance if I wanted it. The reason I don’t want it is because having people around all that time is overloading and I rapidly end up far less functional. Which is something that I bet happens to a lot of autistic people who are receiving 24-hour assistance, but whose difficulties doing things are chalked up to being autistic rather than being overloaded by the 24-hour presence of a person in their life. (The overnight assistance I get is carried out through an electronic monitoring system, which significantly cuts down on that problem.)

I have advocated in several different states (including states I don’t live in) for improved services for autistic adults (including autistic adults who are quite unlike me). I have written up detailed information for the Autism Society of America on that topic despite not belonging to the Autism Society of America. I was part of a study carried out for the state of Delaware that interviewed successful adult service users and our staff to find out what worked and what didn’t, and I have presented to the Autism National Committee on a similar topic. I have done informal advocacy work in the offline world for other autistic people receiving services, including autistic people with little or no formal communication system (and also non-autistic people with developmental disabilities, since I’m not exactly going to say “You’re not autistic so I don’t care if you’re getting crappy services or not”). I have given talks to parents on how to assist their children in developing self-advocacy skills (regardless of communication method) and getting the best sort of assistance and avoiding the worst sort for their children, and I have assisted several agencies in training their support staff on both general human rights topics and understanding autistic people.

I have even been to a conference that had the theme of developing support systems for all varieties of people with developmental disabilities needing all levels of assistance, and doing the entire thing outside of institutions (sorry to disappoint the people who love the scare tactic of “People with a certain severity of disability must end up in institutions or die,” but it doesn’t work that way).

I don’t generally talk about all that at once, because it’s just something I do, as the need and situation arises. I don’t get paid. I don’t get (or want) much recognition, in fact in some cases due to the nature of the situations I have to do the entire thing without anyone but one or two people knowing I’m involved at all. I do this because I actually care what happens to other people. And I’m only talking about this right now because I think there’s an assumption that all I do in my life is sit around and blog.

And because I actually care what happens to other people, I don’t go around extrapolating only from my own life. This doesn’t stop people from assuming that I do, but actually I meet and talk with a wide variety of autistic people and also read about their lives as described by themselves or people around them. I also meet, read, and talk with a wide variety of other disabled people, as well as family members and staff. I use as much of this information as I possibly can when doing the sorts of things I do.

This, as well as my own life, is how I know various things about how the real world works out and can work out for autistic people, that often escape people who go on broad generalizations and stereotypes.

For instance, I hear a lot about autistic people who “need” 24-hour support in order to be protected from head-banging or other self-injury. That’s interesting. I didn’t have 24-hour support when I was doing a lot of that. I used to routinely hit myself in the head — with my hands or with objects — until I either blacked out, lost motor control, or became too confused to continue. I once calculated how much I did it and it was far more often than the standards I’ve seen for “severe self-injury”. I probably sustained more brain damage than I ought to have, and I know there was a risk to my life (a risk I’d just as soon not take), but I’m alive. I have seen people with far less severe self-injury than I had, described as “needing 24-hour support to survive” on the basis of their self-injury alone (heck, I have seen people sent to the Judge Rotenberg Center for far less than I’ve done). The results of lacking 24-hour support in that regard are mostly not pleasant, and there might have been a higher risk of death in that time, but I’m not dead. (And in the past year or so I’ve rarely self-injured in that manner, for anyone wondering.)

I also hear a lot about people who “need” 24-hour support because they might walk into traffic. I know a number of autistic people who do that and do not receive 24-hour support. Several of them have been hit by cars that way. Another one has been physically grabbed by bystanders and yanked out of traffic numerous times. While, again, this is not necessarily safe for them or drivers, they and drivers have all survived so far. (I should also point out, having seen several college towns, that non-autistic college students are often more dangerous pedestrians that way than autistic people, and few of them are on 24-hour support plans.)

And I hear about people who “wander off” (always seen as something we do in a quasi-dreamlike state or something, rather than as taking a walk) without proper clothing for the weather, etc. And I remember just three or four years ago ending up across town at three in the morning in shorts and a t-shirt, with nobody around, being barked at by an angry pack of wild dogs and having to wait that out before I could go home. I could tell you plenty of similar stories about other people I’ve known.

Some of us have trouble cooking, remembering to eat, or feeding ourselves. Many of us go hungry as a result. The human body can survive a long time while undernourished or outright starving. We survive, some of us missing meals, some of us missing days and weeks of food. The same way people who can’t afford enough food (a category many of us fall into as well) survive. And some die. But a lot survive.

I’m describing these situations for a reason. Certain kinds and levels of support may be the ideal. But when reality does not match up to that ideal, a lot of people presumed not to be able to survive, do survive. A lot don’t, too, and that is why people need access to whatever kind of assistance is necessary. But one thing I think when I hear about all these people who “need” 24-hour support based on such-and-such a trait, is the amount of people I know who have that trait or even more of that trait than those said to “need” such support, who’ve somehow managed to survive without it. Because they have survived without it, they’re presumed not to have the trait, and not to need the assistance as much as the people already getting the assistance. But the people already getting the assistance might survive too — not that the assistance should be taken away to find out, and not that people should be forced into barely subsisting, but there is not necessarily the fundamental difference of types of people here that some people want to paint it as. Those deemed worthy of assistance get it (sometimes inappropriately, though), and those not deemed worthy of assistance live various kinds of dangerous and unhealthy lives and go overlooked.

There’s also an incredible lack of imagination around possibilities for this assistance. I find it easier to imagine alternate ways of assisting people because I have seen them in action, or heard about them and how they work. I come from an extended family in which many people who would now be considered highly unusual and in need of tons of extra support, were not considered that unusual, and were considered just part of their communities. They got the assistance they needed, more or less, just like everyone else did. Not that there was no ableism, but things were handled a lot differently.

I see almost no understanding or knowledge of that situation in people who seem to declare that institutions are The Only Way to “manage” some people, as if that’s all there has ever been or could be. I also see almost no understanding of that situation in people who take their own culture so much for granted that they can’t see how other cultures could possibly enable and disable people differently than our own culture does. They assume that disabled people (in white middle-class North American anglo cultures) have always been classified, by everyone, in the exact same way, and always stick out like a sore thumb, and are always in need of “special” assistance rather than included in the amount of assistance everyone gives each other as a matter of course. I also see in this the ignorance with which people assume that poorer cultures automatically throw disabled people to the wolves at the earliest opportunity to “save resources” — because it’s assumed that disabled people take resources, give nothing back, and that every culture measures people on some scale of resources allotted. In reality, different cultures (and different parts of different cultures) respond to disability differently, including who they do and don’t view as disabled to begin with. Rather than acting like there’s only one culture on the planet, we could actually learn from this.

The assistance people receive takes many shapes. All people receive a good deal of assistance in their daily lives. Some of these people are totally aware that humans are an interdependent species and that they are beneficiaries of this, and others cling to the illusion that they are independent. Some people receive a kind and amount of assistance that is less common in their culture. If they are rich or royal, this might be expected. If they are receiving the exact same sort of assistance because they are disabled, it might be seen as special and burdensome.

But the way in which assistance is received varies too. There is nothing — at all — special about institutions, that makes them able to provide assistance that nobody else can. In fact, the quality of assistance in institutions tends to be lower than the quality of the same assistance outside of them. And much of what they do provide is not assistance at all, but a kind of anti-assistance that should not be given to anyone. To say there is categorically a kind of person who belongs in them, is false.

Some assistance is taken for granted as part of what communities do for each other — whether for pay or without pay. In my opinion, all assistance, paid or unpaid, needs to be moved into this category eventually, until people do not differentiate in terms of value between bathing someone who can’t bathe themselves and providing food to someone who can’t grow their own food. These should just be things human beings do for each other.

In the world as it is right now, different cultures draw lines in different places between what communities do for each other — and how doing that takes place — and what is “special” and “different” and “burdensome”. It’s time to start erasing those lines.

But in the meantime, there are many different ways of getting assistance to a person. They can live with a person (or more than one) who assists them with all of those “unusual” things. They can live next door to someone who assists them with those things. They can have someone come in and do those things. They can use adaptive equipment and environmental modifications to do those things. They can receive instructions from a distance in how to do those things, or have a computer programmed to walk them through doing those things. It can be a combination of all of these and other things, it just depends on the situation.

Disabled people can also provide assistance to each other. In my first year of living on my own, I only ate at all courtesy of an autistic person on the phone willing to walk me through each step of doing everything (from “move this part of your arm” on up). That was not an ideal situation but we did it because that was the best method of support available at the time. I now live down the hall from her, since we’re good friends now. And we still provide some assistance to each other.

Both of us, mind you, are officially classified as severely disabled and we can provide at least some assistance to each other. I do a lot of random physical tasks for her that she has trouble doing because she can’t walk, and I also am apparently better at putting her compression boots on her than her staff are. I am not good at organizing myself to do even basic things, but I can take directions if they’re given in exactly the right way. She provides a lot of support when I’m overloaded or shutting down, and for a lot of the confusion I get into with everyday living stuff. We stick by each other in crises even if we’re sick of each other. We don’t do this full-time (neither of us could, and neither of us wants to), but we do little things for each other all the time, because we’re friends, and most friends, disabled or not, do things for each other when they can.

My failure to support the same things Mr. Doherty supports stems not from my having not seen various real-life situations, but in fact from my possibly having seen more real-life situations, more ways of doing things, and more variation among people, than he has. And I try to look at all disabled people, not just autistic people, and all people, not just disabled people. And what I see — all the way around — is a far greater range of options than the way things are currently seen in a few very dominant cultures. And a need for people to recognize their total interdependence and act on that recognition before it’s too late — for all of us. When I look at that whole situation, I can’t see the standard approach to autism as effective, ethical, or even truly advantageous, for anyone. We need to be looking at more ways for human beings to support and assist other human beings (regardless of what category those human beings fall into) — not ways to eradicate certain categories of human beings.

What Harold Doherty apparently won’t print.

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I have repeatedly tried to point out to Harold Doherty that far from protecting autistic people, his views of us actually endanger a good many of us. In the service of his cause (silencing the voices of autistic self-advocates, as far as I can tell), he has trotted out the old and dangerous myth that anyone capable of communicating a desire to remain autistic is, in fact, oblivious to the realities of self-injury, institutionalization, running into the street, and so forth.

In response to his post about the supposed “siren call” of neurodiversity advocates, I wrote a reply that among other things acknowledged the reality of autistic people who are considered severely disabled (that’s a classification I officially belong to), and the experiences we go through, but proposed another way of looking at this.

In addition to failing to post my comment, he has written a further response that went:

The reality which you are unable to acknowledge is that a great number of autistic persons ARE severely disabled. The existence of some highly skilled, high functioning autistic persons does not in any way change the fact that many autistic persons are severely disabled. The neurodiversity movement does not acknowledge or even admit that reality.

So, I acknowledge that some autistic people are severely disabled, he fails to acknowledge that comment by deleting it, posts something as if that comment never existed, and then tells the world that neurodiversity advocates are the ones failing to acknowledge something?

I know what he is failing to acknowledge:

One side-effect of the myth that only autistic people who cannot currently discuss being autistic in English are severely disabled, is that autistic people who can discuss being autistic in English die. There is no nice way of describing that. Policy ends up being made by people who listen to people like him. People judge our ability to do other things by our ability to talk or write, sometimes without even bothering to determine what those other things are. People who can talk or write or hold jobs or whatever are turned down for assistance that would allow them to survive. The lucky ones find that assistance in some other way. The unlucky ones go through things like starvation, homelessness, institutionalization, and death.

I wrote To the Kit Weintraubs of the World a couple of years ago, in response to Kit Weintraub spreading similar stereotypes. I don’t need the exact same assistance now as I did then (in part because I live in a more autistic-accessible environment at the moment), but the point still stands, and the Kit Weintraubs and the Harold Dohertys of the world would do well to actually listen to this rather than find some way to dismiss it, ignore it, fail to print it, and fail to acknowledge it.

Or maybe, to them, the lives of autistic people who can oppose their viewpoints in a way they can’t deny are less valuable. I can’t discount the possibility. Maybe if we all just starved to death without any services because we couldn’t possibly be severely disabled enough to need any, we could stop doing things like trying to affect policy and ethics surrounding autistic and other disabled people. Maybe we’re just too inconvenient for anyone to acknowledge — and maybe the fact that we are committed to building a world in which people of all disability classifications are able to live full lives regardless of what classification they happen to fall into, will get swept under the rug so long as they keep claiming that we don’t live the lives we lead or hold the views we hold. Whatever it is, they sure don’t want to listen to us.

For more on this topic, read Autism Advocates Do Not Take Autism Seriously. One has to wonder, at any rate, why so many so-called “autism advocates” are so dedicated to trampling on the autistic self-advocacy movement.

Babble and nonsense and typing and speech.

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There are things that I don’t really want — would never truly wish for — but various nuisances make me wish they could change. This kind of thinking is incredibly narrow in scope, and does not take into account the real causes of the problem. It’s a kind of thinking I see all the time in other people, but so often presented without questioning it, without pointing out the errors in this kind of thinking, without pointing out the damage it does to present it as if it’s just fact.

I sometimes wish I could talk (note: talk here means in any functional sense to use speech for communication on a regular basis — it does not mean, make word-noises with my mouth). Not because I think there’s anything superior about talking. Not even because of most of the everyday nuisances of communication equipment usage. No, it’s a different nuisance.

People react to my writing differently than they react to the writing of speaking people. They act like what I have to say is more profound because I type to communicate — even though, if I could speak, I would be saying the exact same things. They also question whether I am really the one writing things more often, which is not something I see a lot directed at speaking people (even when they are using a form of echolalia less communicative than what I am doing in writing, and may in fact be repeating someone else’s words and concepts).

They also seem to assume an entire history that isn’t mine (usually of someone who never talked and then started using FC and then started typing independently), and then if I correct them they want the entire complex speech history explained in detail. Even if I’m way too tired to do it justice. (And if I’m too tired to do it justice, then I have to gloss over and oversimplify things in ways that they blame me for later when they find out that it was a glossed-over oversimplification.) And even if my life story isn’t really anyone’s business.

They also seem to assume that I am vastly, vastly different from people who speak better than I do (or have enough tricks set up to look like they speak well even if they’re just muttering a word now and then to people). Zilari and I have a lot in common even in terms of speech and communication history, but I bet people would put us in two totally distinct categories because we branched off in slightly different directions at one point with regard to the prioritizing of speech vs. writing in our brains.

Here is a big part of why I don’t understand or believe the whole thing about speech meaning you’re better at doing things:

If I were to speak, here is what my life would be like:

I would every few hours hit a level of shutdown that I now normally only experience during stressful trips to conferences and other unfamiliar and busy locations. I would freeze in place far more often than I do now. My mind would be filled with a constant painful buzzing haze that I could not get to go away no matter what I did. This would affect my ability to understand and react to my environment in an efficient (for me) way. I would be totally incapable of learning to do many of the things I have learned recently, and even if I learned them, I would be unable to perform them. I would not be baking orange bow knot rolls for fun, I would not be baking anything at all, I would in fact be routinely struggling with the physical act of getting food into my mouth. I would throw loud screaming fits on a regular basis (something I’ve managed to stop for the most part), I would still head-bang to the degree I used to (once per second for hours, rather than the occasional thing it is today), I would possibly even do violent things (something that is all but gone). I would walk into walls, walk into the street, and all those sorts of things, far more often. I would fail to notice many key aspects of what was around me.

And all the same people who come to all these weird conclusions about me because I don’t speak, would then decide that I was something they called “high-functioning” because even if all other abilities went down the tubes at least I’d be speaking.

And that is the position that all kinds of speaking auties are in right now.

By contrast, if my brain were to cut out typing (and all pre-typing activities) as well as speech (something it’s shown itself quite capable of doing in the short-term), many other skills would increase greatly. Typing may not be the extreme of a memory-hog as speech is, and may be far more comfortable and useful, but it’s still pretty processing-intensive. If I were to cut out language and the idea-blocks that go with it, there are all kinds of things I could do (and do do, when that happens temporarily).

And yet you’d probably call me lower-functioning because I wouldn’t even type at that point.

I don’t understand this. This is foreign to my brain. If I am not having to process words and the majority of abstract concepts, there are all kinds of things I can do. I can read the social mood of an entire room and the pattern of each person’s part in shaping it. I can sense dangerous situations and figure out what needs to be done to avoid them. I can feel my way through all kinds of survival-related tasks. I can draw on a vast reservoir of instinct and pattern-matching to navigate situations that words and abstract concept crap won’t let me do. (And I have done all these things, in situations where other people saw me as not typing and not responding to them and started doing things like waving their hands in my face.)

So I see a bizarre pattern here: The more standard forms of language and speech we use, the less many of us can do, but the “higher-functioning” everyone will claim we are (and will attribute all kinds of skills to us that don’t exist). The idea that speech and language are both processing-intensive tasks that detract from our ability to do other things doesn’t cross people’s minds. The fact that for some people the more speech they use the more assistance they will need for other things, doesn’t cross people’s minds either.

I type because communication in language is important for various purposes (both personal and more general) in my life, and it is the absolute most efficient way I have to communicate, and other methods are not feasible. It does not make me a different species of autistic person from people who speak, or from people who don’t speak or type. It does not determine what sort of autistic person I am as compared to others (other things determine that). It does have a negative effect on some skills, but that’s something I’m grudgingly willing to deal with given the consequences of not typing (although sometimes I wish there was some other setup available where language was not necessary at all). It certainly does not make me either more or less worth listening to than anyone else, and it does not make my ability to do day to day living skills automatically worse than people who speak (in fact for some of them speech might render them less capable of some things than I am, the same way it would do for me if I could still do it). It does not make me amazing (from a non-disabled “inspiration” perspective).

It seems though that whether you type or speak, if you’re autistic, people will stereotype you into one form of oblivion or another. Unfortunately that stereotyping can be a matter of life and death at times, so it’s not all that trivial.

Gee this is familiar.

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Tuesday I got through with two days of something fairly grueling. Not at the same level as going to a conference, but only just barely easier. I could feel my head almost humming afterwards. It was very difficult to perceive or understand much of anything, or to do much of anything. Standard overload stuff.

But the standard overload stuff reminded me of something: This is what it felt like to use speech (including having the “speech-generating modules” online even when not directly speaking) for a few hours, when I was at my best.

Have you ever had the experience of running too many fairly innocuous programs on a computer, so that the computer’s performance slows to a crawl because you’re using all the available memory? That’s what the various activities of Monday and Tuesday were like.

By contrast, have you ever had a single computer program that eats all available memory and still wants more and can singlehandedly grind your computer to a halt so that you can’t use the other programs that you really want to be using right then? That’s what speech was like, even when I was comparatively capable. It’s becoming very obvious to me why my brain decided to either delete it, drastically downgrade it, or limit its availability. That’s what happens to memory hogs.

If anyone finds a lost Dalek…

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…anywhere in or near the Autism Museum on Second Life, could you please let us (Alfhild Briers, Muskie Marquette, etc) know?

It’s making quite a loud racket with its “Let no opposition halt you” and so forth, and confusing new visitors to the museum… but we can’t find the darn thing.

Daleks look roughly like the ones in the picture on this post of elmindreda’s, but can take a few different forms as well.

(Edit: Never mind, we found it. Blech. It has been destroyed. Click here for a dead dalek picture. And for more amusement, Dalek rides.)

“Fun” isn’t always all that easy, either.

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One of my hobbies is collecting books by autistic people. At this point, I don’t even always read them, but I love to obtain them, put them on the shelf, and keep them in order.

Anyway, one of my aims for several years now has been to create a searchable index so that other autistic people (or other interested people) can pick out books more easily by any of a number of subjects. I thought of the idea because people were always asking me “How can I find a book by an autistic person that…” “…addresses this particular subject,” “…has this particular interest,” “…had this particular experience,” “…had this particular label,” or else actually lamenting the idea that books didn’t exist by autistic people on those subjects/interests/experiences/labels (when in fact the books did exist, the person had just never heard of them — it’s only a relative few autiebiographies and such that people tend to know about, out of over a hundred that actually exist).

The problem is, this is a project better suited to an entirely different set of skills than the one I have.

I have a lot of trouble reading books for immediate comprehension, which is the sort of reading you have to be doing in order to scan through a book and write down how each subject category you’re doing pertains to the book (or even one subject category). I’m far better skimming through it, having no clue what I just read, and later finding that when someone asks me “Can you find me a book by an autistic person who’s into Dr. Who?” and then remembering the spot on my bookshelf that that book goes, going and grabbing it, and finding that it’s a book by Will Hadcroft. Or someone asking me about people who discuss employment, and going, grabbing a whole pile of books, and writing the names down.

It’s much harder to get the systematic sort of index that I want to make. On the employment issue, for instance. I would want to make a list of books by a number of categories:

  • Employment status of the author
  • Jobs the author holds or has held
  • Books that instruct about employment
  • Books that give experiences of employment
  • Books that are primarily about employment
  • Etc.

First off, I see all sorts of areas where the categories are imperfect, and this drives me nuts. I am horrible at categorizing things because of this. Not, as some autism “experts” would have it, because I’m “incapable of seeing the big picture.” But rather because my version of the “seeing the big picture” does not involve cutting out the real information and substituting in an abstract thought for a whole variety of actual pieces of reality that may not, under closer examination, fit the abstract thought. (Which seems to me to be what autism “experts” always mean by “seeing the big picture”, which might be why so many autism “experts” are so clueless about autistic people.)

Second off, even if I establish categories and such, this requires going through the entirety of every single book searching for how this particular book fits into that category. This requires reading for immediate conscious comprehension, which is not my best form of reading, as I mentioned. It requires then, while struggling to get through the actual book (while the entire world seems to be turning into a headachy blur of little black squiggles) reaching over and writing things down whenever they become important. It requires not suddenly seeing something else in the book that I need to remember for a later category and trying to write that down in addition to or instead of the original category. And it requires doing this to over a hundred books, where each new book just adds to being overloaded.

I have tried this several ways. I’ve tried it as “Pick category, go through, write down information, go on to next book.” I’ve tried it as “Pick book, write down every conceivable important piece of information for every single category for that book.” I’ve tried combinations and variations on those two ideas. Invariably, I end up with books everywhere in sight and totally overloaded (to the point of starting to throw the books across the room or hiding under my blankets trying not to look at them). And this is supposed to be a hobby, something I do for fun. Good grief.