Bibliomeme

Mum-is-thinking tagged me to answer a book survey. My answers are a motley collection, and I think that motley collections are always the most interesting. I’m guessing that people like to read these kinds of meme-tag surveys because they either want to hear how others have loved the same books they have, or else want to hear about books they had not yet (or possibly would not have) encountered, but would also enjoy.
One book that changed my life
I’ll have to take this is “one of many” rather than as “the one with the greatest impact” because surely different books have had done this at different stages in my life. There are a lot of contenders for books that were the first (if not always the best) to open up my knowledge-base to completely new fields of understanding, such as those on AD/HD or autism. Those are valuable in that regard, but more important are the books that give a different kind of insight, looking behind social paradigms to critically analyse the how and why of human interaction.
For the way that humans interact with their environments, Donald A. Norman’s The Design of Everyday Things looks at the problems that bad design causes people, and how people assume that their difficulties are considered to be their fault, rather than bad design. He touches but lightly on the issues of handicap accessibility, and I don’t think he mentions Universal Design at all, but the central message is still the same. My inner geek adores good, useful, imaginative and æsthetic design, and it drives me nutz when tools, machines or environments are badly designed.
For the way that humans interact with medical & emotional health care providers, Paula Kamen’s All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, And Only Slightly Enlightening Headache that describes some of the problems with the medical models of psychology, such as being a problem patient rather than a person with a problem, or the need to find “cures” for everything when instead one can be helped and be healed without being cured.
Strong messages from both of these books.
One book that you’ve read more than once
Who doesn’t have a comfily-tattered set of J.R.R. Tolkien’s four-volume Middle Earth trilogy? (Yes, trilogy means three books, but The Hobbit is part of the Lord of the Rings, and science fiction & fantasy is rife with trilogies composed of more than three volumes.) For my favorite re-read when stuck abed with a nasty virus, I really enjoy Anne McCaffrey & S.M. Stirling’s The City Who Fought. It’s a fun piece of adult science fiction with the well-drawn characters and nitty-gritty techy details and swashbuckling action that make for a engaging read.
One book you’d want on a desert island
Most people like to pack either something really long, or else an extensive practical reference book. But I don’t think that I’d want to be stuck with some interminably long piece of fiction, no matter how well-written, and I’ve probably read enough references over the years that I could eventually solve any manner of functional issues. What I want would be a huge book of blank pages, so I could keep a journal of thoughts about various things. It’s often difficult for me to work out mental explorations without a written medium. I’ll remember or figure out the right knots for lashing together poles, but being able to compose my thoughts is integral to my equalibrium.

One book that made you laugh
Terry Pratchett’s Mort was the first Discworld novel I ever read, and Death is still my favorite character, possibly because he’s so practical and the human world doesn’t always make sense to him. Plus, he talks in ALL CAPS. Soul Music is damn funny, too. I love the puns and unexpected turns in Pratchett’s books.
One book that made you cry
Ebbing & Gammon’s General Chemistry (sixth edition). The authors of this uninspired, heavy tome had an interminable number of equations to solve. I made it through four semesters of chemistry and sweated through this volume for half of them.
One book you wish you had written
Actually, I’m still compiling thoughts for my next book. I don’t tend to dwell on wish-I-had’s.
One book you’re currently reading
I never read just one book at a time, which explains why it takes me so long to finish anything! I just finished Joseph P. Shapiro’s No Pity. I’m furthest into Majia Nadesan’s most interesting Constructing Autism, which I will finish as soon as I remember where the hell I left the book laying about.
Currently my bedside pile contains: Thomas Skrtic’s Behind Special Education, Alfie Kohn’s What Does It Mean to Be Educated?, Kegan & Lahey’s How the Way We Talk Can Change the Way We Work, Marshall B. Rosenberg’s Nonviolent Communications, Fisher & Shapiro’s beyond reason, and Walter Kauffmann’s translation of Basic Writings of Nietzsche (maybe after finishing the book I’ll be able to spell N’s name without looking it up every time). I had just started on Richard Dawkin’s The Selfish Gene and then my daughter took it back with her to college; bad girl. By default I’m also reading Hardman, Drew & Egan’s Human Exceptionality: School, Community and Family because it’s my current textbook.
One book you’ve been meaning to read
The future pile-by-my-bed: Daniel C. Dennett’s freedom evolves, John H. Holland’s Hidden Order: How Adaptation Builds Complexity, Douglas R. Hofstadter’s Gödel, Escher, Bach: An Eternal Golden Braid (I think that one may take a study-buddy to gain the most benefit), the Routledge Critical Thinker’s series editions about Gilles Deleuze, Jaques Derrida, and Michel Foucault, Eli Maor’s e: the Story of a Number, and David Darling’s Universal Book of Mathematics. Doubtless there’s more, but that’s what’s on that section of my bookcase.
Tag five other book lovers
Anna, Catana, David, Liam, and Whomever wishes they’d been tagged but felt like they needed some kind of “official” sanction to simply write and post a list!

To Be A Person, or, Not To Be A Person-With

I promised to address “person-first” language. (And my pal David promised to “rip the piss outa [me]”, for which I’m curious what-all he has to say. Then again, I’m really curious as to what all of you readers here have to say; just who ARE you people??)
Person-first language refers to saying things like “person with a hearing loss”, as opposed to someone “being hard-of-hearing’. The philosophy behind this is that the person is more important than an impairment they have; that a person should not be known by a diagnosis. This is a reasonable goal, but like anything, it can be taken to extremes and has been.
I think “person-with” makes better rational linguistic sense when the “with” is a temporary (or preferably temporary) condition, as in “person with broken leg” or “person with cancer”. Person-first language makes all kinds of sense when trying to avoid the bad hospital habit of saying “the emphysema in 402”. The ENT says I am a person with hyperacussis and tinnitus.
Actually, I would end up saying things like, “I am nearsighted and have Auditory Processing Disorder”, and skip the whole person-with scenario. “I am brunette” is infinitely handier than saying “I have (or am a person with) brunette hair”. It’s understood that it’s my hair color we’re talking about, and that a description of me is only slightly delineated by that descriptor – I’m more than my hair.
When the condition is rather a state of being — something fairly permanent, whether acquired or developmental — then it’s (noun) as in autistic, Deaf, gay, male, dyslexic, Canadian et cetera.
Person-first can be prissy and awkward and sometimes is simply benign earnestness at being polite – well-intended but treacly. Or, person-first can be Politically Correct at its most obnoxious, demonstrating a belief that the condition is “recoverable” and thus meaning something should be done about it. At its worst, person-first demonstrates a belief that the condition is shameful, to be avoided or hidden, such as a person with homosexual tendencies who just needs a good dose of religious correction and a burning desire to be morally uprighteous and “normal”.
Early in my life I started doing things left-handed, so they made sure I learned to write with my right hand. And I’m still left-handed. My inner right-handed person was never “recovered” from that pathological condition, because that imaginary person was never there. I’m a lefty who has learned how to be ambidextrous, which often means that I’m clumsy any way I go about it. Trying to pretend I’m really a right-handed person and calling me such never changed that. Likewise, autistics are not broken or diseased neurotypicals, anymore than gays and lesbians are not confused or immoral heterosexuals.
(I just wish there was a better term for “I have ADHD”; ADDer just doesn’t cut it for me. Maybe they’ll rename it – again – and we’ll have a more euphonic term.)

What's the Use?

Long day; short post. Quite likely my shortest post ever.
Does everything and everyone have to have a “purpose” in life? ‘Twould seem so, according to the Bible. However, “purpose” is an anthropocentric point of view: everything is made for the use of people, including other people.
Sometimes the benefits (not “uses”, but benefits) of having different people around are not obvious. Those odd people don’t fit the neat cogs of traditional social machinery, and society has had to invent new mechanisms to “deal with” the misfits and to isolate them from the social workings.
Thus for example, we get “special education” programs to make up for the fact that the current educational system doesn’t work all that well. Being a heretic, I don’t believe that an educational system that enables students to learn should have to be “special”. (I also don’t believe in the segregation.)
What is really needed is the understanding that it is not the people, but the social machinery which is lacking something that creates this mis-fitting, and therefore, the misfit.
In the way that travel enables us to understand what our home geography and culture is like (by way of comparison and contrast to that which is so familiar as to be unseen), the misfit enables society to learn more. This happens indirectly by illustrating how the social machinery is lacking. Furthermore, the social machinery is often lacking for a lot of people, not just those for whom it’s such a poor fit as to be outright unusable.
This informing also happens directly by the communications we get from all the misfits. Of course, it’s not true communication unless there are those willing to listen, and to take the messages seriously.
People do not have to be equivalent to be equal in their inherent value.

Making Sense of Rules

Harry Wormwood to his daughter Matilda, from the movie based on Roald Dahl’s book, Matilda:
“I’m right, you’re wrong. I’m smart, you’re dumb. I’m big, you’re little. And there’s nothing you can do about it!”

To make sense of something, to understand how it works, what is significant about it in your own experience, in short, to create a meaningful gestalt, requires that one be able to manipulate it physically, to stretch it, pull it, push it, turn it upside-down, use it in different ways and then compare and contrast the results. This is the active process of learning.

Making sense of the social world and its often unstated rules requires that one be able to do original research in the nature of it, just as one does with the physics of the universe. The problem however, especially for our autistic/Asperger’s students, is that the social world is not nearly so consistent as is the physical world or the digital world. You mess around with mechanical objects or video games, and the responses will consistently fall within the same parameters. Likewise, the ecology of the biological world is more complex, but still rather straightforward.

However, human social systems are rife with “fuzzy logic”. The social sciences are seen as comparatively “soft” sciences because sorting out the variables and interpreting the results is so damn tricky. Given such complexity and unpredictability, it’s no wonder that autistics, whose social radar is less acute, often prefer to stick with the natural sciences, or view themselves as researchers of human beings.

People not only need worlds that they can make sense of; they also need worlds that meet their needs. The needs of children and students are somewhat different than those of adults. They are still very much in the process of building understandings of the social world and of their places in them. They need to be able to create systems that are functional and adaptable, and they need to find a place in society that allows them to continue to grow as individuals, that draws upon their personal strengths and works with their individual weaknesses, and that respects the parts they will have to play throughout their lives.

Rigid, unyielding rules systems built upon the premise that the child or student is a bad person, who needs to be controlled, and always told what to do, cannot effectively provide that.

There’s a kind of physics in social relationships: push on someone, and they will push back with that familiar “equal and opposite reaction”. No one likes feeling controlled, like a helpless pawn in some chess game. Everyone wants to feel that they have some measure of say and control in how they get their needs met – this is what empowerment and respect is about.

Empowering others is scary for some people because it requires relinquishing some of their control. Or rather, empowering others is about giving them opportunity, the right tools, and letting them have responsibility. The whole crazy part about the current scenario at the JRC is the people in control complain that they “have” to use force (pain and other punishments and rewards) because the students would otherwise be irresponsible.

This isn’t about a child “testing authority” as feared by disciplinarians; it’s about the student being able to try things out, practice, reflect, discuss, acquire new skills, and practice some more. Being given absolute rules circumvents the learning process, and later when they need to adapt to novel situations, leaves the learner in the lurch, stranded without the knowledge of how to devise new strategies. They only have a limited number of tools in their social toolbox, and little knowledge of how to build new kinds of tools. If we go telling children what to do for their entire lives, then we shouldn’t wonder that they become young adults without the ability to think for themselves and to be responsible without someone monitoring their actions.

How do children learn to be responsible? It takes practice. If you want people to know how to be inner-directed, moral, responsible people, then they need the opportunities to learn how, and they need adults to share their wisdom and their power and to help them along the way.

Moving Into Commitment and Inclusiveness (PART 2)

Implementing personal change creates opportunities not only in the immediate sense, but also because you will find yourself connected to others in new and surprisingly beneficial ways.
However, the ripples can ricochet back in unexpected manners. Personal change that moves towards social change is always a threat to someone – often masses of someones. People often find change to be a threat, or they find differences to be threatening. Agents of change that push at the paradigm are therefore met with resistance. (Excruciatingly earnest but ineffective revolutionaries typically underestimate the weight of social inertia that buffers systems against major changes.)
But what is it that makes change – even social change obviously intended to improve opportunities for people – such a threatening concept? Why does challenging social assumptions create such opposition?
A lot of it has to do with the discomfort of having the world view pushed and challenged. "Cognitive dissonance" is an emotional reaction to events that contradict what you know; they make your brain hurt, as it were. To be able to accept that what you are experiencing is real means that you have to change your attitude, OR if you are to maintain your beliefs then you have to change how you are perceiving things. So, do you adjust your understanding of the world, or do you imagine things to be different than they are?
In this case, someone acting out of the paradigm (be it a social hierarchy, a expectation for a particular kind of social interaction, or a personal ability) challenges not just the hidden assumption that there is a paradigm. It also challenges that everyone must be contained and constrained within it, and that what they do is because of their position in that paradigm. It’s an artificial social construct. It’s not “real” except what we make real, and we can change that.
If people can't imagine why you would act the way you do, they may erroneously attribute various motivations or faults to you, despite the lack of real evidence for such. They then try to “put you in your place” because you are acting out of character, and not fitting into the expected social rôles. When you are trying to push for social change of some sort, especially for acceptance of differences, you are going to get a lot of challenges to this new agenda of inclusiveness.

People who assume they are normal can be trouble. They tend to go around changing the world to suit themselves; their standards are "community standards". "I'm normal, so if I like it this way, almost everyone else will. Right?”
~Glyn Webster

Inclusiveness is an extremely dangerous idea, because it redefines all of the miscellaneous parameters of what is “normal”. A great many ideas about “abnormal” did not fully exist until someone came along and set down specific boundaries about what constituted “normal”.
Artificial boundaries exist everywhere. A lot of people’s definitions of themselves are what groups they belong to, and those groups are partly defined by “otherness” – who and what they aren’t. People who have spent their entire lives in a world defined by exclusion, where exclusion defines many of the others as being not-normal and therefore not-okay, often do so without any consciousness about this exclusionary paradigm. It’s too entrenched and socially invisible.
Inclusiveness will only become normal when there is no Other to exclude. To do that, we have to realize that in most ways, in all the important ways, everyone is okay-normal for who they are. (It is intentional behavior that is acceptable or unacceptable, not the intrinsic qualities of a person.) We all pay a great price when people must go around pretending to be something else than what they are and someone else than who they are, and trying to "pass for normal".
andrea

Overcoming Inertia and Moving Into Commitment (PART 1)

So much of what people have been blogging about lately is the necessity for major changes in what assumptions are made about the abilities and worth of people, all kinds of people, even those that have been considered to be of so little worth as to need removal from the gene pool or to not even rank the status of murder victim.

High moral ground is easy to take. It’s abstract, refers to grand sweeping generalities, and oddly, often doesn’t make a lot of impact on our daily lives. It’s easy to witness for big things against the big impersonal bureaucracies or in demonstration marches. But it’s far harder to protest the steady barrage of small, deadly insults from family, neighbors, coworkers, neighbors, fellow church or club members and other acquaintances.

Part of this lies in the fact that writing a letter to an editor, or posting on a blog, or doing a public presentation all give one the opportunity to plan ahead, to contemplate and improve wordings and rationales, and to deliver precise quantities of verbiage in a manner that is calculated to be clear and rational. You can define the problem and explain your position.

Instead, real life happens. And here we find ourselves in odd moments with unexpected opportunities to assert that NO, this is not right!

“Normal” injustices are easy to point out. “No, wait a minute – the end of the queue is behind me.” That Mr Next-Guy-In-Line here in front of me is in a wheelchair doesn’t matter; no one should be treated as a nonperson or noncustomer. (And then the interloper apologises to me for having cut in front of me, still ignoring the man ahead of me in line!)

The unusual injustices are hard to point out. These are the things where the current paradigm so permeates culture that most people can’t even see the injustices. When those are pointed out, most people do not even understand why they are problems. Pointing these injusticess out attracts dismissal. Expecting and then demanding fair treatment on someone’s part earns denial. Being the recipient of denial and dismissal, not even being taken seriously, gives one the horrid sensation of fighting fog.

Full-fledged denigration would almost be easier than denial. Anger (even excruciatingly polite righteousness) is easier to deliver. But being “on a mission” when people fluff off your responses as unimportant or silly or borderline crazy or merely picky is very, very difficult.

It’s hard to advocate when people don’t even understand what the hell you are talking about. You’re not starting from ground zero, you’re starting from the negative integers. You can’t even protest the problem until you can define it for someone and then convince them it exists!

Moments like that can paralyze one, especially when they happen unexpectedly, and you are left standing there gawping with profound indignation, but finding that the words just don’t come. There are no set phrases laid down by Dear Abby or Miss Manners to initiate the right social scripts for some things. To ask for apology or to demand equal, human treatment requires the transgressor to understand the problem in the first place.

Hey, I’m not crazy or contagious with some loathsome disease or going to harm your children or steal your wares. I’m just exhausted from working nine hours and dizzy from the smells of the cleaning solvents and perfumes and new merchandise and all the crazy flickery lighting and background noises, and being ticcy, and having auditory processing delays, and flinching because my hyperacussis makes me overly sensitive to that sudden screech, and wearing my sunglasses inside because a migraine is creeping up on me, and HEL-LO Mr Cashier you don’t need to turn your back on me so you don’t have to acknowledge my presence and wait upon me, and Mommy you don’t need to drag your kids away, and Ms Assistant Manager don’t bother asking me if I want to sit down by the pharmacy so someone can call a responsible party to come fetch me. I’m just a harmless shopper who needs to get a few groceries and go home and make dinner for the family and then get some rest! I’m an otherwise Okay Person and I belong here!

Being able to advocate in such situations can be hard at first. It’s certainly not a lack of desire. It’s not necessarily a lack of ability. Given enough moments alone, some useful scripts can be formulated and practiced, to have on hand for those brain-dead moments. The hard part is overcoming the decades of inertia that have been trained into one. Be a good little victim. Don’t inconvenience people. It’s not important. Who the hell are you to complain?

Personal change is not always easy. It’s not usually the cognitive impetus that is difficult; sometimes it’s not even the emotional impetus. It’s the inertia that holds us back, that prevents us from speaking up when something wrong is happening, or from speaking out and initiating changes. The internal change cannot be merely called forth just by wanting it.

On the cusp of genesis is the threshold of inertia. You must gather sufficient momentum to force, to hurtle yourself through the portal. Up to that very grain of time is an oozing molasses of eternity that impedes the effort, although the mind is halfway on the other side. But mere movement is not enough, for mere movement is not progress. To overcome the inertia and move into change, you need sufficient commitment. Not just commitment to an idea, although that is first necessary, but commitment of the heart towards a goal, a purpose for something.

Once that commitment is invested, the portal is not just a change from one room to the next, but a threshold that lets you fall upwards with a single large, fateful step …

“HERE WE GO!”

Personal change is dangerous, not for the person taking the step, but for everyone else. The person who makes that transition is pushing at the very assumptions of the common paradigm, because any major changes you make in yourself are going to create ripples that affect others.

It’s this ripple effect that creates some of the inertia – you have to want to step forward, not just for yourself, but also at risk of changing the way others relate to you.

What helps create some of the crystallization of will is the realization that implementing change not only creates ripples, but also creates opportunities. “Nothing succeeds like success”, and crossing that threshold is a success. It is not only a moment of empowerment, but also of genesis. It initiates a hub and lightning rod for other changes; you acquire some of the momentum of the universe, and previously unimagined and oft-unexpected things are now drawn to you; new webs of connectivity sprout and catch onto the new hub, and you find yourself meeting people and getting aid, encouragement and inspiration from unexpected sources. This liberation and delight also means that you are now an agent of change yourself, and can in turn connect with and help others …