Plaint of the Aspie

Standing alone and unmoved,
The crowd swarms around me.
Don’t stare at me; I can’t stare at you.
I hear the words but miss the message;
Your silent meanings mock me.
Stumbling over the social graces,
Trying to remember the nameless faces.
Speaking my native tongue in accent;
Missing jokes, clobbered by punchlines.

 

Are not my tears and blood salt of this earth?

 

I tried so hard, failing ever and again.
Tried to bang out of my head
The taunts that carved up my heart.
But in the end, nothing ever changed.
Too many signs and labels
Swarm about me in multiplicity.
You think they create reality;
Drawing lines is how you define
Who you are and what is real.

 

We are deemed aliens, and yet your brethren.

 

Do not discount the misunderstood.
See! We are making re-visions,
Re-ordering disorder with grace.
Thinking outside the narrow boxes
We could never fit into anyway.
For I will resist when they insist
That only average is normal;
And I will refuse when they accuse
That different is defective!

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Where’s My Shelf?

I was at one of those big chain-bookstores the other day, with a gift certificate burning a figurative hole in my wallet, just begging to be used. I’d even planned ahead for the inevitable “Error 404: File Not Found” of name retrieval, and written down a list of authors and titles of the dozen books for which I was looking. Not that I had really expected to find all of those books, but not that the gift certificate was that big anyway.After pausing to check out all the spiffy bookmarks (“Ooh, shiny!”) I wandered over to the rack between sociology and history.

“Women’s studies, Men’s studies,” (small section, that) “Gay/Lesbian studies, African-American studies, Latino studies, Hawaiian Islander studies,” (wow, we’re no where near the Pacific) “Native American studies … History of Ancient Egypt.”

Wait a minute, missed it. Given my profound ability to be “nose-blind” and miss seeing something right under my nose, I back-tracked and started over. Nope. Okay, maybe the books I’m looking for are filed under some other category. Just because something makes sense to me doesn’t mean it’s true – after all, the grocery keeps the baked beans by the tins of luncheon meat rather than with the tins of vegetables where I would expect to find them …

After duly waiting in the Information queue, I hand my list to the clerk who patiently pecks the names through the store’s search engine. By the time she has reached the end of my list, she is frowning in sympathetic frustration, and informs me that they only have one of the books, which has to be ordered from some distant warehouse. I politely decline, realizing that instant gratification is simply not going to be had, and decide to do my own search-engine pecking with the county library system.

What I found odd was not that they did not have the particular books for which I was searching – I tend to read offbeat stuff, not the latest poolside romance. Rather, what I found odd was that there were not any books on disability studies to be had at all. The section simply did not exist anywhere in the store, not between sociology and history like the other group-studies, not in the psychology or the special education or the history sections.

You want to hear some interesting numbers?

In the United Kingdom there are 9.8 million people with some sort of disability, about 1 in 7.
In Canada there are 3.6 million people with some sort of disability, about 1 in 8.
In the United States there are 49.7 million people with some sort of disability, about 1 in 5.
(As with any epidemiological information, census definitions may differ slightly.)

Either way, that’s a LOT of people; the largest minority within most populations. So how the hell do people go about referring to “them” like they’re rara avis, some minor, marginal sector of sub-humanity? Everyone must know several people with disabilities, whether they realise it or not.

So why are disabled people so invisible and neglected by history? The answers are complex. Part of this is due to the fact that the largest minority is also the most diverse: disabled people include babies, the elderly, people with sensory differences such as the Deaf or blind, people with learning disabilities, people with cognitive processing differences such as autistics or the faceblind, people with developmental or acquired physical differences such as cerebral palsy, people with chronic health problems … Some disabilities are highly visible, and many are invisible.

Another part of the issue is that disability is something feared, shunned, and to be avoided. It is seen as abnormal, defective, deviant and pathological. Disabled people until very recently were shut away in institutions (and often still are), were not schooled (and often still are not) or were segregated in separate schools (and often still are), and no matter what the disability were seen as imbeciles and therefore not deserving or needing status as full citizens capable of making their own decisions (and often still are). The disabled are considered only as, and are seen only as patients and clients. They weren’t people to be considered as a positive and common group, or a social force.

But just as one can now find histories and university programs and shelves of books about Women’s Studies, and find histories and university programs and shelves of books about Gay & Lesbian Studies, we can now find find histories and university programs and –

– well, histories and a few university programs about Disability Studies.

I’m going to buy myself another bookcase. I need more shelves.

Uncommon Parallels: Gossiping And Stimming

In an article from the Social Issues Research Centre (out of Oxford), Kate Fox describes in her article, “Evolution, Alienation and Gossip” the functional rôle of mobile phones for promoting community by aiding gossiping. Apparently my text messages are rather humdrum and atypical, as they relate mostly to grocery expeditions, dinner attendance, and doctor appointments rather than gossip.

However, a particular paragraph caught my eye:

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

Grooming-talking (“phatic communion” for the psycholinguistics word buffs out there) is the verbal equivalent of grooming other apes.

Perhaps stimming fulfills many of the same functions, to “stimulate production of endorphins, relieving stress and boosting the immune system”?

I realise the comparison sounds really odd. Instead of being a social kind of functioning, it is a typically autistic kind of functioning. I mean, gossiping is a social activity of the highest sort. Rather than communicating in the sense of exchanging necessary data, it is passing along information as a means to promote peace and solidarity between people in the same “tribe”.

In contrast, stimming is an emblem attribute, the very archetypical sign of the autistic. It is pretty much a self-involved activity; one might stim upon something they’re seeing or hearing, but it’s not a social interaction per se.

Of course, nearly all people gossip to some extent, and nearly all people stim in some manner or another. People are people, whether autistic or neurotypical, and it would be erroneous to assert otherwise.

Nor am I asserting that gossiping and stimming are dichotomous states. Rather, that they are two activities that despite being other- or inner-directed, fulfill much the same psychosomatic benefits.

What is also interesting is that both gossiping and stimming are activities with negative connotations assigned to them. Fox brushes away some stereotypes by asserting that men gossip as much as women, about much the same subjects, and as often as women do (albeit more often with work colleagues). It’s not that men don’t gossip, but rather that they don’t like to own up to it because it seems trivial.

Fox says, “Whatever its moral status, there is certainly some evidence to suggest that gossip is a deep-seated human instinct … This would indicate that gossip, far from being a trivial pastime, actually performs a vital and socially therapeutic function.”

Stereotypical stimming activities like hand-flapping, rocking or finger-flicking have historically been actively discouraged and “trained out” because people don’t want to own up to the fact that they are or someone else is autistic. I am willing to bet that a lot of stimming actually still goes on under private cover, or has been translated into more socially-acceptable fidgets. It is too essential to the human condition to do what one can to reduce stress, one way or another. As a cautionary note, when people cannot use benign ways of dealing with stresses, they will sometimes end up using other stress-releasers that can sometimes be ultimately addictive or self-destructive.

In would be very interesting to run physiological testing to measure some of the state changes in stress levels that occur before, during and after someone engages in a bout of stimming. If we find that these activities do indeed aid people in reducing stress, we may then have further proof that attempting to stop or limit these behaviours is literally harmful to autistics (and others).

Just as people with Tourette’s should be able to function in everyday life without having to spend great amounts of energy trying to suppress their tics in order to pass for normal, autistics should likewise be able to function in everyday life without having to spend great amounts of energy trying to suppress their stims. (Of course, I’m not purporting that highly disruptive tics are going to be acceptable everywhere, nor that injurious stims are a good thing. Such blanket, extreme statements are merely strawman arguments.) As long as the tics or the stims are not going beyond someone else’s personal boundaries, then they ought to be considered acceptable.

Common, polite society needs to realise that not everyone moves, talks, interacts or waits in the same standardised manner. Spending enormous efforts to pretend that one is the same as everyone else does nothing to advocate for diversity and does nothing for one’s health. Disabilities and physical differences are a normal part of life, and so are neurological differences.

The Perils of Passing

“Third Rock from the Sun” television show:
One of the human characters, Mary, was explaining to Dick (one of the aliens trying to impersonate humans), her reservations regarding dating him.

Mary: “It’s as if you were out of sync with every other person on this planet!”
Dick: “What do you mean? Every day I go out of my way to do things that appear normal!”

There’s a lot of attention placed upon trying to make people with various differences appear to be “normal”, everything from in-the-ear hearing aids (that often are not as useful as behind-the-ear aids), to prostheses, to training autistics to mimic NT social behaviour. Not all of these are bad things necessarily. Given the current popularity of going around wearing a Bluetooth mobile phone on one’s ear like some kind of of cyborg, I can see hearing aids turning into equally high-tech decorative bits.

Unfortunately, emulation works against the overall health of the autistic, for a number of reasons.

Emulation is not a viable goal because it creates additional stress.

Spending extra energy to appear normal is stressful. Spending time trying to make eye contact and worrying if it is being done enough, and suppressing little mannerisms or tics adds to the work load of existing. Spending mental energy attending to these things means having less to devote to other activities, such as decoding speech or organizing and monitoring the visual environment.

Even if depression has a partly genetic basis, extra environmental stress worsens that.

Emulation is not a viable goal because even if the social rituals like eye-contact are performed, that does not mean the autistic will gain the same information from the activity.

Whether or not emotional perception on the part of the autistic is due to less eye contact and facial observation or vice versa, may be a chicken and egg question that will doubtless take more neurophysiological study to unravel. However, the result is the same, because even if the autistic attends to facial observation, that does not necessarily mean the same information will be perceived.

Emulation is not a viable goal because an impaired ability to do so results in ostracism from the community.

If it isn’t done well all the time, people feel fooled. Trying to normalize me or make me “indistinguishable from my peers” isn’t going to work. I don’t do it well. My little weirdnesses aren’t that noticeable at first, but they pile up like snowflakes obscuring the scenery. Then people get annoyed at me because they feel betrayed and fooled, thinking I was a one-of-them normal person.

Emulation is not a viable goal because it devalues the inherent qualities of the person.

Lack of acceptance for who or what one truly is leads to additional stress, depression, increases and/or aggravates the types of stress-related health problems. Lack of acceptance for who or what one truly is leads to increased self-esteem problems and increases the difficulties in social interaction.

My recommendation:

Quit trying to forcibly mold autistic children (and adults) to emulate neurotypical behaviors. Focus instead upon working with the person rather than against them. Work with their skills and aptitudes, work upon stress-reduction techniques, and work on methods for interacting with others that are natural for both the autistic and neurotypical people. Work beyond denial or tolerance toward acceptance and appreciation of diversity in schools, work places, medical care settings, and other arenas of social interaction.

Games People Play (off and on the court)

TODAY’S QUOTE:

“Nobody realizes that some people expend tremendous energy merely to be normal.”
~Albert Camus

There’s a newsclip kicking around the Web, from the CBS Evening News of February 23rd, 2006.  Normally I don’t pay attention to basketball.  Or baseball.  Or football.  Or hockeyball (joke).  This newsbite is different.  So different that CBS felt compelled to make a last-minute change in their programming plans to show this “incredibly powerful” story.

The newscaster explains, “Because he has been so devoted to the team, for the last game of the season, Coach Johnson actually decided to let Jason suit up – not to let him play necessarily, just to let him feel what it’s like to wear a jersey.”

And then near the end of the game the coach even lets him onto the court.  Finally getting to play in a game, rather than fetching water and toweling down sweaty team-mates, the basketball player made six three-point throws.  The crowd goes wild.

Gee, you’d think that a coach would want a player who could shoot like that to be on the court all the time …

View the newsclip now 

The whole situation reminds me of how I felt every year when the “Rudolph the Red-Nosed Reindeer” animated Christmas show appeared on television.  There was always something unsettling about the whole story of this reindeer with the glowing nose, and it wasn’t until late in my own high school years that I figured it out.

No one liked Rudolph because he was different.  In the beginning, his family tries to hide his nonconformity, covering up his nose with mud, but then Rudolph talks funny from the congestion.  Still, it is deemed better that Rudolph be perceived as talking funny, than for everyone to actually know the truth.  Eventually the disguise breaks down, and Rudolph’s glaring, glowing nose is revealed in the rough-and-tumble of playground mischief.  Everyone is horrified.  They always are when someone tries to “pass for normal” and is eventually outed.  People feel deceived, because the Other was not what they thought.

The reindeer games coach orders Rudolph away. So shunned, he leaves his North Pole village, joining up with another misfit, Herbie the elf, who wanted to be, oh horror, a dentist rather than a toy-maker.

A few years later there is a Christmas eve of such epically foggy proportions that Santa Claus cannot make his usual gift-giving rounds.  Santa realizes that he can still do so if Rudolph is allowed to lead.  Eventually everyone decides to tolerate the mutant reindeer, perhaps accept Rudolph a little bit, but only because he can be useful to them, lighting the way for Santa’s sleigh.  (Herbie gets to be a dentist, another occupation that is tolerable because it is useful to the others, rather than because Herbie has a passion for dental care.)

The program was made in the early 1960’s, coming off of the ultra-conformism of the 1950’s.  Everyone thought it was cute and sweet.  I couldn’t explain the intrinsic discomfort I felt as a child, not from viewing that particular show, or even in everyday life.  Nor could I explain why I identified so strongly with Rudolph or for that matter, the alien Spock from “Star Trek”.  When the neighbor girls compared me to the Professor from “Gilligan’s Island”, I couldn’t understand why that wouldn’t be a compliment – he was the only sensible one of the castaways!  But even the Professor, a quintessent geek (though thankfully neither of the foolish nor ugly duckling sort), was the odd one out.

The telethon poster child or “odd team-mate” is held up in the same way, but also held away at arm’s length, and Othered.  We’ll let him be on the team in an accessory manner because it makes us feel munificent, and because he might be exceptionally good at something we need.  (Were he merely mediocre, or even near or at the bottom of the list for overall skills, would he be on the team?)

But the mere fact that a team-mate is known more for being different than for any aptitude or acquired skill, and even the fact that stories about such people are circulated as ABSOLUTELY AMAZING! and exceptional shows that pity is still stronger than acceptance.

The problem with pity is that it creates division; it puts distance between people.

Pity prevents respect by implying inferiority; there is a humiliating lack of worth, because the person is defined by what they cannot do instead of what they can do.  Victims receive pity – but nobody wants to be a victim!

Pity is disempowering.  It does not decrease burdens by sharing resources and abilities. The people who see only the “broken” part are uncomfortable; that discomfort is a kind of Schadenfreude, a sense of relief that the bad thing (the disability) did not happen to you.

Pity is like magical thinking, where people want to give Fate some kind of token payment to avoid similar disaster from befalling them.

Pity is similar to both fear of the other, and to contempt for the Other; the Other must somehow have done something bad, and “deserved” their fate (as given to our social mores from the Puritan ethos).  Either way, it is dismissive of the person’s concerns, and denies their opinions, and their own personal view of reality.

Pity is not the same thing as compassion, where the other person is seen as being similar to one’s self, and is identified by who they are, is known for what they can do, and is accepted as being a worthwhile person to play with or work with, and to know and to love.

“Because he has been so devoted to the team, for the last game of the season, Coach Johnson actually decided to let Jason suit up – not to let him play necessarily, just to let him feel what it’s like to wear a jersey,” says the newscaster.

::BARF::

Meanwhile, too many people work endlessly hard at trying to “pass for normal”. The problem with pretending to be normal is that it gives power to the paradigm, to this concept of normalcy.  As long as the person is pretending to be whatever kind of average-normal they are not, they are devaluing themselves and allowing others to devalue them, and they are handing over their personal power to the realm of the imaginary Normal people.

Normal, average people are imaginary, because no-one is wholly average and normal.  However, the imaginary-normal people are a very real majority group.  They all pretend to be normal, and en masse they have majority power under that paradigm.

Wow, isn’t it absolutely amazing!  Autistics can play basketball.  Next thing you know, they’ll let Negroes or women play basketball …

Feh.

Being the Class Project: Reflections upon False Inclusion

Helping the awkward new student seemed like a good idea, so why did it make everything worse?

In fourth grade I changed schools between the third and fourth quarters. I not only changed schools, but also entirely different states, as my mother took my sister and I with her to live with Grandma for a few months. (I do not know the circumstances behind this; adults did not feel the need to explain things to children.) Undoubtedly it was to be to my benefit, because my initial fourth-grade teacher was a poor example of the profession, and I did not mind leaving her classroom. Another benefit to me was leaving the cohort of students I had been with for the past few years; I hoped the new students would be “nicer”. Unfortunately, I was an odd little girl and apparently went through life with a sign on my back that read “clueless,” as I was to be picked upon where-ever I went.

All transfer students face the same challenges of adjusting to different neighbourhoods, buildings, teachers, textbooks, rules, and grading schemes. Apparently it did not take long for the teacher to catch onto the fact that I was not adjusting and making friends in the hoped-for manner. Presumably a request was put to my classmates to help me by offering me encouragement. I have no idea how this was instituted; like many of the subtler or implicit social things, the effort was completely off my radar.

One of the reinforcement mechanisms the teacher had was a “warm-fuzzy” type box for the students to drop in anonymous notes praising each other for various activities. These were read aloud by the teacher once a week. After I had been there for a couple of weeks there was an abrupt flurry of missives complimenting me on my efforts at spending time on reading or being helpful in my classroom duties. I found such approval odd, for we all had the same duties, and reading was simply something I enjoyed. Why should someone be commended for having fun?

Actually, I found such praise to be entirely unrewarding, and the realisation of that sat uneasily upon my young mind. I did not have the concept of “hollow praise” in my mental world yet. But I knew that although the words given to me were accurate, they lacked any semblance of real meaning. If the immediate purpose of this exercise was to boost my self-esteem or to comfort me, it truly did not work. Rather, it made me more anxious with the indescribable angst about how I was “supposed” to feel, and added to the ever-growing concern and unease about what I was “doing wrong”.

Moreover, if the long-term goal of this exercise was to initiate friendships between myself and the other students, it likewise did not work. Friendship is usually a natural result of mutual respect, having shared interests or experiences, and often from being together for periods of time, or having similar backgrounds or circumstances. Given the numbers of students in the classroom, the chances of at least one or two becoming my friend would have seemed likely. However good my potential aptitudes (despite actual marks that bounced between “ahead of level” to “needs much improvement”), I was obviously a rather awkward child. Not just a clumsy nine-year old girl lacking the physical graces necessary to playground games, I was also lacking the interpersonal graces necessary among  my ten-year old classmates. (The latter increasingly problematic as social interactions became progressively more complex, more important – and sometimes worse – more subtle.)

Even when noticed, no one knew what invisible differences handicapped my social abilities: Faceblindness (Prosopagnosia) meant I had trouble recognising people, and it always takes me a long time to figure out ways to reliably identify someone. With my ADHD I was prone to interrupting (I still have trouble with this at times). I had trouble discerning between when people where just pausing, done with a sentence, wanting my response, could be interrupted, or were done conversing altogether.

Being autistic meant my conversations lacked the kind of give-and-take where one speaker offers the other person conversational offerings, and provides responses. I did not know I was supposed to express interest in others by learning about their interests and life events, and develop a positive social history by keeping in touch. I’d never been told to do so; like so many things in life that neurotypicals somehow learn naturally, it was part of a vast body of hidden knowledge that I’d never been taught. Moreover, I lacked the intuitive sense for figuring out the scripts were supposed to be for “Barbie Gets Married” and other types of pretend play. Such awkwardness in social pretend play could hide my richly imaginative inner world. I did not know I needed to share my ideas, much less  how to effectively demonstrate them, aside from nascent writing efforts.

As for playing with dolls, rather than endlessly re-dressing or prattling with the figures, I enjoyed arranging the furnishings (especially when scale-accurate). I was much more interested in learning about and discussing nonfiction, and my particular passion that year was the fascinating realm of mysteries, detectives, spies and secret codes. These were not however, the interests of most of the other girls who prattled interminably about horses, pop music, or Betty and Veronica comics. They instead were developing interests in being stewardesses when they grew up, or in reading and endlessly emoting over pre-teen romance stories. My mother complained, “Why can’t you be more normal?” The girls told me that I sounded like the Professor from the Gilligan’s Island television show and laughed at me. I could not figure out why that was not a compliment, as he was the only sensible person in the show!

Once again, I found more pleasure – and the opportunity to recharge my energies for the rest of the school day – by spending all recess on the swings or reading a book. “Oh, you don’t want to do that,” the teacher told me, nudging me away from where I was sitting leaning against a tree trunk and reading my latest book (a library volume on how FBI agents caught counterfeiters) “Go and have fun with the other children.”

The efforts to include me failed on several fronts, but they all had the same ulterior mode of operation. Each of the different manœuvres relied on trying to create friendships by having the previously-bonded group of students “help” the newcomer.

Oh, they tried to help. Two or three girls made me their special case for a couple of weeks, until they tired of the exercise and dropped me from their attentions. They dutifully tried to help me integrate into their little play groups, but it was quickly apparent that I was the unplayable Old Maid in the card deck. Given a choice, eventually no one wanted to add me to their games; my presence was a burden whether on the ball field or the skipping-rope line. The determination of these few students was probably encouraged by the teacher (and other staff members), and undoubtedly they thrived on the social rewards of being good junior helpers who would care for someone needy. If nothing else, my being the inferior “other” just strengthened the existing social bonds between them.

Unfortunately, caring for was not the same thing as caring about. If I complained to the teacher about being put into awkward situations from being pushed into playgroups where neither I nor the children wanted my presence, my concerns and discomfort were dismissed. “You should thank them for doing that for you,” the teacher told me, “They’re letting you play with them. You should appreciate that.” But when I played with them, I was made fun of for my inability to do things the right way. I could not understand why I should express thanks to others for the opportunity to be ridiculed.

Ah, ridicule … I was deficient in any sort of concern for fashion fads, and gave scant thought to my appearance; putting on clean clothes and more or less brushing my hair was adequate in my book. Being tactily defensive, I could not stand to let anyone mess with me. The problem wasn’t who was doing it, but what they were doing. When my mother brushed my hair she would order, “Stop being so squirmy! Why do you have to be so difficult?” If I complained that being handled hurt, she dismissed my protests, “This doesn’t hurt – stop being so whiney!” Even collar tags on store-bought clothes drove me nuts. “Just ignore it,” Grandma told me, “you’re being too sensitive.” (In turn, Grandma could never stand the feel of cotton balls that came in aspirin bottles, but somehow that was different.)

The girls tried to help me look more girly by doing cute things with my hair, but my long, limp tresses were not amenable to being braided or to holding barrettes. The hairdressing felt like an attack upon my body, a strange sort of help-attack. This activity was especially bad because I was no longer even a person but rather a living salon dummy that needed fixing up. There was a strange lack of personal boundaries; they could touch me but I was not allowed to touch them in like manner, which I could not comprehend. Worse, I was not allowed to protest this inequality, and they chided me, “Hush now; hold still and be a good girl. We’re only trying to help you.” And there I was, compelled by everyone important, that I should coöperate and make friends. “Don’t be a cry-baby. You want to be pretty, don’t you?”

Help was apparently something that is done to you and for you; I was the passive recipient for help. They were strangely disempowering, these activities that were ostensibly for my benefit. They certainly did nothing to integrate me into the student body. Instead of improving my own grooming abilities, the whole “fix up Andrea” scene only served to further socially disable me. Demonstrating their superior hairdressing abilities not only affirmed their capacities for following the proper rôles, but also strengthened their memberships in the clique with all that social grooming behavior.

Together, my disinclination for being swayed into primping, and my inability to be socially coerced into behaving normally, had serious affects upon my acceptance into the social milieu of the schoolyard and neighborhood. I was poor at “passing” and although my differences were not obvious at first glance, they eventually piled up like snowflakes obscuring the scenery. People dislike it when someone manages to pass for a while, because the majority then feels that they have been deceived. I was the odd one out, but unlike Rudolph the Red-Nosed Reindeer, did not yet have a special talent that would earn me begrudging tolerance for being useful in my oddity.

Their attempts to normalize me repeatedly failed, and I bore the given responsibility for that failure. It was my fault that I had problems; I just needed to “try harder” to fit in and be a fully functioning member of the scholastic social scene. The hidden promise was that if I managed to overcome whatever obstacles were in my path, I would be accepted. However, the true obstacles I had to overcome were not intrinsic, but due to the others’ lack of acceptance of me as myself. As Charlie Brown lamented in the Valentine’s Day cartoon special: “I know nobody likes me; why do we need a holiday to emphasize that?”

I knew there was something terribly wrong with this entire paradigm, but did not understand it well enough to identify the problem, much less to effectively protest against the dreadfulness of it. Unfortunately, this was only fourth grade. There was much worse bullying and sexual harassment in the years ahead of me.becoming increasingly more complex and more important.

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.)

And if thy hand offend thee

And if thy hand offend thee, cut it off.
~Mark (ch. IX, v. 43)

The current research into the genetic basis for autism includes not just understanding it as an intrinsic and permeating neurological difference, but is straying into the realm of being able to screen for babies carrying those genes, just as one can screen for (and thus not bear) babies with Down’s Syndrome.  (It should be noted that Down’s syndrome is a nonheritable genetic difference, but many other conditions are heritable.)

There’s an element of hatred in destroying an aspect of one’s self. The hatred is not always visible as stemming from fear, because the inherent paradox can be repressed. This paradox of virtue by self-hatred comes from a double-bind disguised as social responsibility: “Don’t you want to have a healthy baby?” How could this seemingly innocent question be a double-bind, an unwinnable situation? If you answer Yes, then you are at fault for not doing/having done the deed. If you don’t want to do the deed, then you are a worthless [future] parent because you aren’t Doing The Right Thing.

If an embryo carries a genetic trait, then that means you were responsible by having the genes in the first place. If those genes are undesirable, then that can be described as the genetic equivalent to passing on the sins of the fathers to the sons. Screening embryos for hundreds of “bad” genes is essentially seeking to perfect and breed better humans. People are uncomfortable with the fact that we can’t “fix” everything with science or social engineering, and remove all traces of perceived imperfection.

The genetic screening scenario presumes upon knowing which traits are bad and which are good, and ignores the fact that genetic diversity is necessary within a population for it to be able to adapt to new situations. We need people with different skills to fulfill different roles, some of which may not yet exist. Furthermore, the “usefulness” of particular genes is not always evident; having two sickle-cell genes makes one anemic, but having one sickle-cell gene confers resistance to malaria. Useful traits can occur because of clusters of interacting genes, and identifying all the players in the interaction is difficult; you may need some genes (that could be individually problematic) but work in synchrony with other genes to create useful traits.

Screening out embryos assumes that autism is a bad trait, rather than a variation caused by combinations of genes. It also assumes that having autistic children is tragic because there is a social stigma to having a defective/ crippled/ retarded/ autistic child — the child will never grow up to have a job and marry, but will ever be a burden upon the parents and society in general. Those “afflicted” are therefore undesirable and not-quite-human; people who are different are unacceptable. The whole “quality of life” issue given as the rationale for such efforts is presented in tragic, worst-case scenario terms. It paints disability as a fate worse than death that must be avoided at all costs.

Such disabled or nonstandard individuals must be able to “prove” their [monetary] worthiness to society to be acceptable, and thus deserving of the same rights and privileges as others. To be acceptable, the deviant people must do their best to “pass for normal”. One must straighten kinky hair, pretend you don’t have a gay partner, walk with braces rather than use a wheelchair, wear “invisible” hearing aids, and for heaven’s sake, not flap your hands in public when you get excited about something. Those perceived norms or desirable qualities state a lot about the implicit social power structures: only the imaginary “normal” people are okay, even though in reality there is no perfectly average, normal person.

Much of the disability seen in autism is from the extrinsic, socially-created problems. In essence, people are saying that genetic screening is a good thing because those children would have poor-quality lives, but are ignoring that such attitudes are a large part of what create difficult lives for people who are disabled or different!

The tragedy is not in having a baby that is in some way different, but rather in the thinly veiled disdain / loathing / fear of the public that is projected onto the baby, and therefore reflects upon the mother’s moral, genetic and social worthiness. It’s her fault if she declines to avail herself of current genetics testing (for any number of anomalies) and bears a “defective” baby.

Should women be required to produce an acceptably standard “product”, a baby that will conform to prevailing social norms of desirability and perfection? It seemed like a good idea during the American and German eugenics movements in the early decades of the 20th century …

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.

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

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