What to take from Comments

For the unfamiliar, Vi Hart makes fabulously fun-entertaining-educational Youtube videos about math & geometry, doodling, food and music. (No, you needn’t have aced calculus to understand them; my 7-year old grandson thinks they’re awesome.)

Once in a while she takes a tangent, such as this episode, Vi Hart’s Guide to Comments, where she explores ideas about why people make different kinds of negative comments, possible reasons for reacting to them, and how best to respond.

I thought one analysis was particularly insightful:

Type #2 DIRECT SHALLOW INSULT
Commenters like these are thoughtless and bored, and obviously don’t have very high self-esteem. They’ve been taught to be normal, so if anything’s different about you, well that’s not allowed in the rulebook they know.

But in the anonymous internet context, I don’t think the usual explanation of them trying to put you down to make themselves feel bigger quite cuts it. They probably don’t see you as a real, live person, and would never make the comment to your face, so it’s not about putting you down.

In fact, their comments aren’t aimed at you at all.

They comment to pretend that they are not just wasting time on the internet, but being active participants, discerning in their tastes. Their commenting justifies their watching, and just like voting in American Idol or tweeting your local news, their opinion further invests themselves into their identity as a judge, observer, consumer. They have been taught to be vocally judgemental by the people for whom judging means watching, and watching means money. Plus, other commenters might reply, refuting their insult, which proves their comment matters.

As with other types of comments, she then proposes ideas for why we react, and what to do about the comment: that is, just let your eyes glide past them and move on.

The whole video is superb! (Also, she has fun playing with wax on her fingers.)

Auto-generated CC has some glitches, as usual.

A Reliable Read: Person-first language and oppositional models of disability

This post from Finn’s excellent blog, Standing in the Way of Control is an easily-accessible introduction to the uses and problems that can result with “person-first language”*.

Just an appetizer:

This oppositional attitude toward disability stems from the ableist idea that disability is something that happens to “normal” people—or that disabled people are altered able-bodied or neurotypical people—rather than a natural aspect of human existence. This applies particularly to those of us who have lifelong disabilities—we cannot envisage a life in which we were not disabled relative to the societies in which we grew up.

Now, go read “Person-first language and oppositional models of disability”! (-:

 

* “Person-first language” refers to the practice of saying, “person with ____”, meant to emphasizing the person rather than defining them by their condition(s). Good intentions run into the law of unintended consequences when ignoring how people define themselves by intrinsic qualities, e.g. “I am a Deaf”, “My autistic aunt”, “He’s bisexual”.

WE MUST CREATE CHANGE

I was going to call this my “Hope For 2015”, but that is so passive and useless. Anybody can – and lots of people do – post warm, fuzzy notes with Hopes for the New Year, and others click and share. Lovely.

But this is NOT all warm & fuzzy. It’s literally dead serious (with many murdered throughout the year), and quite often blunt, because I am blunt at times. It’s also a call to a change of perspective for some of you.

Deal. Think about it. I’m not a lone voice. Click and share.

MY CALL TO ACTION IS FOR YOU TO READ THIS THROUGH, THINK, AND SPEAK UP. ALL YEAR LONG.

And the next year and the next.

This isn’t about some stranger, or Those Other People, or “That Kind”.

Children with disabilities or other differences are not diseased or broken. The same is true for adults. Yes, those “poor, little disabled children” grow up into disabled adults. Gee, so where’s the concern now? It sure isn’t at work; in the U.S. general unemployment is at 5.3%, but for disabled adults it’s twice that at 10.8%.

Nor are autistic or ADHD children some kind of modern mystery; millions of such adults have been around for decades, just unrecognized for lack of diagnostics. Most of us are profoundly relieved to find out Why. We still have to deal with the details, but that’s easier when you know that not all your difficulties are from some kind of moral failing, or from a lack of trying (and trying, and trying).

WHAT, YOU NEVER HAD KIDS LIKE “THAT KIND” IN YOUR CLASSES? YOU KNOW WHY?

Some were kept at home, because until passage of the IDEA in 1975, US law did not require public schools to teach everyone.

Some were warehoused in institutions, badly treated, undiagnosed or misdiagnosed, and oft uneducated.

But many of us were there; how we struggled through school and life, without accommodations or understanding, and often the target of bullying by peers and even school officials.

Untold numbers of women and men just knew themselves inexplicably “a bit odd”, and did best they could; some succeeding, others not so well.

At worst are those who not only lacked resources, but were shunned by society’s classism, ableism, racism and sexism, and (if still alive) are found among the imprisoned, derelicts, addicts, abused and enslaved populations.

YOUR CHILDREN AND EVEN COLLEGE STUDENTS WILL LEARN DIFFERENTLY, SO YOU MUST ADJUST

We are neither inherently stupid nor incapable of learning. Learning differently means teaching differently. Find what works. Everyone has limits, but a consistent lack of success means you should use another method, as well as more time. Sometimes the learning is highly irregular in pace. Tie learning to interests to motivate your children and students.

Also, be aware that sometimes the “simple basics” may be entirely bypassed by some students who leap to master higher concepts, albeit often forever struggling with those seemingly “simple basics”. People are humans, not robots. Learning is not always linear.

COMMUNICATION IS NOT JUST SPEAKING

Never assume that just because someone is nonverbal they cannot communicate. If you’re not getting their messages, then *you* are doing something wrong. Nor should you assume that because someone is nonverbal that they cannot understand what people say (though the processing may sometimes be delayed). Nor assume that because someone has been nonverbal for years that they’ll never speak. And damn, will you get an earful.

INCONSISTENCY IN DAY-TO-DAY ABILITIES IS FRUSTRATING FOR ALL, AND NOT A CHOICE

Importantly, just because someone is able to speak or do a task one day, that does not guarantee consistent results. It’s the nature of disabilities — regardless whether considered mental or physical – all involve the brain. Brains are funny things, and many of us have a few buggy Beta-version programs in our wetware. It’s frustrating as hell for all involved.

But don’t assume the “could-then-can’t-now” is intentional. “Oh, he can hear me when he wants.” “Well, you could solve those equations just fine yesterday.” I can guarantee that after a lifetime of such, ridiculing people and punishing them for things they cannot help only increases performance stress.

While that stress might increase focus from sheer terror, it often squelches overall functioning. (Do you want me to listen to you, or try to recall yesterday’s process, or slowly figure it out on my own? I can only do one — if my stomach will stay down.)

TRAMPLE THE TROPES

Ignore the media tropes and centuries of religious hype: disabled people are neither inherently amoral, soulless and evil, nor are they infinitely happy, friendly and angelic. People are people. A few will be nasty bits, some will be profoundly good sorts, and the rest are just ordinary folks who get mad, sad and glad, who screw things up sometimes, and who will also serve others selflessly despite bearing more abuse than anyone should.

We are definitely not incomprehensible, incomplete, little autism-puzzle-pieces, unloving, unlovable, or uncaring.

We are whole people with all the same cares, needs and wants as all humans. Beware — disability happens to anyone at any time. We aren’t a Them, and YOU can be among the world’s 15% in just one day. We are all Us.

STOP “TEACHING TOLERANCE”

Because tolerance means putting up with something one doesn’t really like, or that doesn’t really belong. We want full-fledged ACCEPTANCE.

Nor should we only be acceptable if we can somehow “overcome” our differences enough to pass for Normal Real People. Trying to “pass” all the time is exhausting, and invariably breaks down, oft resulting in the [supposed] Normal Real People assuming that one is lazy, stupid, crazy, all the above, or worse.

Training children for hours a day how to artificially perform “acting normal” does not serve to help them learn how to function best in the world. Yes, of course teach good manners, social and work skills. But suppressing every twitch of one’s natural being adds to stress, making everything else yet more difficult. This is especially when performing like a “normal person” means not doing the harmless things that reduce stresses.

STOP THE BLAME

I must call out the terrifying, unaddressed assumption which underlies so much daily trauma: “The reason the disabled [children] are targeted by bullies is because they are perceived as being weird”. Despite the pervasiveness of this social theme in society, most people are functionally unaware of it, all the while instilling in their Normal People children the same message. Normal People children need to act normal, and not act like That Kind. After all, that’s how the Normal People know the others are That Kind, who’s Us and who’s Them.

But it’s the disabled and different who are taught, over-and-over-and-over that not only is it their fault for behaving or looking weird, BUT ALSO if they weren’t so weird, well then they wouldn’t be bullied. “Quit being so weird! Just say No! Just say Stop.”

Just say BULLSHIT. Because this is blaming the victim. The problem is not that everyone isn’t the same, the problem is that there are bullies.

Even worse, blaming the targets actually empowers the bullies, because the social story says it’s the victim is the one who is acting wrong, so it’s not really the bully who is to blame.

Let’s just top off all that existing anxiety and depression with the trauma of trying to seek justice, but being told again that, “Well it’s your fault, you know. Attracting attention by being weird, and bugging people. You need to quit making trouble now. You already take up too much of our time with all of your “special” needs. Quit whining and go deal with it. — But no fighting, because we’ll know it was you who started it.”

By the way, it’s not “just a kids at school” thing that everyone will “grown out of”. It continues on through college, and happens at work, too.

YOU CAN’T WALK IN THE LITTLE BOY’S SHOES;

THEY’RE FLOATING DOWN-RIVER

It is NEVER acceptable to murder disabled children. Nor should these repeated, horrifying events be considered “understandable” or “excusable”, with the murderers being pardoned just because their son or daughter had a disability.

Increasingly more prevalent in social media, the crime becomes insidiously deemed more and more acceptable. Murderers re-cast themselves as martyrs, acquiring champions to their cause. Throughout repeated blog posts and news stories, they bemoan how taking care of disabled children is just too unbearable, they had to take care of them every day of the week, there was never any relief or help. (Even though there was.) Cue the groupies’ hand-wringing and protests upon the villains’ behalf: “Oh but won’t you walk in their shoes, how they’ve given up their lives, this wasn’t at all what they wanted.”

For in true sociopathic fashion, the poor, long-suffering parents revel in the attention, announcing to the world – sometimes ahead of time — what they have done, and all the while describing themselves as the victims. The dead children (young or adult) are unwanted, and deemed unwantable, less than human just because they couldn’t speak, or needed medical treatments, or used a power chair, or didn’t play with their toys the “right way”, or wore adult diapers … No one would want to live like that; the thing’s better off dead. And what of the groupies? Well, where do you think people get such terrible ideas that it’s okay to kill one’s own children?

ENOUGH WITH THE “DISABILITY INSPIRATION PORN”.

Quit using those heart-tugging videos, walk-a-thons, telethons, and other grand-society functions to win your supposed Cosmic Brownie Points for giving us your pity. Please stop dumping upon us the largesse of your unwanted rags (so Victorian, so passé), or creating useless functions requiring us to serve as targets of unwanted helpful-helper-helpiness for your ego-boo.

Get disabled people out of “sheltered workshops”. Yes, people need work they are suited to. But the segregation and token sweatshop “wages” are an embarrassment and humiliation to all.

YES, CHILDREN GROW UP.

YEP, STILL DISABLED, BUT NOW ADULTS

Do not assume your children will remain permanently childish and incapable — they mature on their own timelines. Allow adults to be adults. Support their needs and interests, but neither dress them like children, nor expect them to live their lives in naïve pre-puberty stasis, without adult desires for socializing with adult peers, life-long learning, mastering skills for some kind of job (even if that job is “just socially productive work” rather than traditional work), and yes, having a love life, however that may be expressed.

YES, PEOPLE ALSO NEED ACCOMMODATIONS;

THAT DOESN’T MEAN “CURE”

Most disabled or different people are not looking for cures to magically change them into someone else, some kind of fantasy Normal Real person that their families wanted instead. Our differences may result from physical events, by random mutation, and / or genetics. Your genetics. We are family. I’m Me, and I like being Me. If you somehow changed all the differences in my brain, I wouldn’t be Me anymore, with all my quirks and abilities.

Of course it will be great to find a means for preventing migraines, epilepsy, fatal medical conditions, et cetera. But it’s also a sad fact that some people have been so convinced of their undesirability as disabled human beings that they can only see “cure” as a means to being an acceptable Normal Real Person. (Worst of all, some people commit suicide because they’ve been taught to hate themselves, as useless and unwanted.)

But what’s really alarming is all the fund-raising, talk, research, and work going on today to eliminate entire kinds of peoples. I’m talking about the thousands of selfish individuals and sociopaths who believe that anyone with neurological or morphological differences should not exist at all, because That Kind takes up too much time, money, and resources.

That’s not “looking for a cure” – that’s eugenics and euthanasia, the same ideas that led to the Nazi Aktion T4 program and other horrors. (In my youth, the state hospital was still in the regular habit of sterilizing people. Had I been institutionalized, I might well not have had my lovely children and grandchildren.)

Yes, we want assistance, we want things that help us achieve what we want in life. Getting the things one needs to learn effectively, to move about, attend to their own needs, to work, to play, to be a part of the community, to have lovers or families. These things should not be seen as extraordinary, special, absurd, or a waste of money, just because they aren’t the same kinds of things used by other people. 15% of the people in the world have disabilities. That is a lot of humanity, and many are uneducated, abused, neglected, avoided, or shut away, depriving the world of incredible amounts of untapped abilities and talents.

CALL OUT BULLSHIT. REQUIRE ACCOMMODATIONS. DEMAND ACCEPTANCE.

MAKE IT SO.

“SORRY, OUT OF ORDER”

A Facebook friend of mine posted this problem for folks to solve:

90 – 100 ( 6 + 3 ) = ?

Answers included 0, -90, 810 and -810. The correct answer is -810. Some of you are sniggering at the errors — quit that! 

Now, if you didn’t get -810, hang on …

Why do people have problems solving math equations? It’s not that they’re stupid, but that:

  • they get confused;
  • are anxious;
  • the teaching was boring;
  • they’ve moved around and have missed bits here and there;
  • they’ve learning difficulties;
  • the teachers are trapped following the text and the text is a mile-wide and an inch deep and not in sensible order;
  • the teaching made no sense or was based upon “just memorise how to do this process” instead of understanding why or when to use what methods;
  • … and sometimes people have problems for several reasons.

Hey folks, don’t feel badly if you got it wrong. I had trouble with the maths in school, too! I didn’t even learn all my multiplication tables until 8th grade. You know what? It’s not fatal; I slowly went through some pre-College Algebra classes at my local community (junior) college, and filled in the confused bits, gained confidence, and eventually went on to introductory Calculus.

And I still have to pause and think on some of my multiplication facts, and still have days when I’m prone to reversing numbers. But those difficulties don’t detract from the fact that I am able to learn math, and they don’t mean I’m stupid. (“Take THAT, ‘Mr. Dull’!” she says, shaking her fist at a middle-school algebra teacher.)

But now I work with students in 7th – 12th grade math, and you know what? Good news! It makes a lot more sense when you go back and review it as an adult! You can fill in the parts you missed or didn’t understand, and get a better idea of how it all fits together. Honestly.

Math no longer terrifies me, even though my brain still has that glitch that prevents me from memorising the quadratic formula. But I never use the quadratic formula in real life.

I DO use ratios in real life, for example, adjusting a recipe, figuring how much stuff to put on my garden, planning travel time… And I’ll show you how to do those really easily, without getting all tangled up in multiple steps, and you don’t need some mysterious “intuitive feel for how to set the problem up”.

.~#~.

MEANWHILE, In our problem above we use Order of Operations. I tell my students, “You use Order of Operations every day! You put your tee on before you put on your shirt, and you put on your jacket last.”

The problem above is solved like this:

Read the rest of this entry »

Mis-Expressed Lane

Today I’m on the Express Lane. (“12 items or less” — that ought to read “12 items or fewer”, but groceries are hardly models of grammar and punctuation.)  I’m not a “number Nazi” — if the other registers are busy, I don’t care if you’ve two dozen items; my goal is to get you checked out and on your way.   It’s a good thing I’m on the express lane, because I have to keep pausing:

“Ah-CHOO! Ah-CHOO!” I remove my face from my elbow, and turn back to my register, where I rub my hands with sanitizer foam.

“Hi there!  Did you find everything for which you were looking?”  bleep, bleep, bleep, bleep, bleep, bleep “Any coupons?” bleep “Okay, that’ll be $14.67, if you please.”

“What if I don’t please?”  grins a puckish guy.

“That’ll still be $14.67,” I grin back.  “Out of $20?  That’s $5.33 in change, there’s the 33 cents, and 5 — ” I screw up my face long enough to turn away — “Ah-CHOO! Ah-CHOO!” I remove my face from my elbow, and return back to my register, where I rub my hands with sanitizer foam.

“I got my receipt.”

“Thank you; here’s your bag. You have a good day.”

Two hours later, I’m still sneezing.  (Twice at a time; I sneeze twice, my kids sneeze twice, and my grandson sneezes twice.  Funny what-all the genome encodes.)

One of the mysteries of retail is that no matter when people arrive at the store, “everybody” wants to check out at once.  There are lulls, and then there are lines, and lulls again that enable me to wipe the schmutz off the scanner glass, straighten up the candy bars, and finish unwrapping partially-peeled rolls of coins.

Hah-CHOO! Hah-CHOO!” Once again, I remove my face from my elbow, and return back to my register, where I re-rub my now-chapped hands with sanitizer foam.

During such a lull, I speak across the eight-feet gap to another checker, “Are you wearing perfume?”  When she replies affirmatively, I surmise, “Oh, that must be why I’m sneezing.”

“Oh, it’s not very strong.  And I only use a little.  It smells very nice,” she asserts, sniffing her sleeve, “I put it on at 5:30 this morning!”

So what if that was hours ago? Hun, if I’m sneezing this far away, it’s stronger than you think.

Ah-pppbllh! Ah-pppbllh! *sniff*” I go up to the Customer Service desk for a handful of tissues, and return to check the next cluster of customers.

Come the next lull, she wanders over, defensively insisting that her perfume isn’t strong.  “Maybe I’m catching something,” I offer as a conciliatory alternative, wondering if my affect had not come across the right way earlier.  She appears to be one of those really social people who liked to chit-chat with others, and I’ve begun to realize that in such interchanges, style trumps content, and “verbal grooming” trumps practical considerations.

Thankfully this was just a four-hour shift, because my night’s sleep had not been much longer than that.  I go home for lunch and after my short nap, am not surprised to find that I’m no longer sneezing.

And that, O Best Beloved, is why I don’t wear scented body products during any of my jobs.

B is for Bob, C is for –

“Eek, a bee!” yelped the little girl as her mother paid for some flowers at the nursery register.

“Oh, that’s just Bob; he can’t sting you.  He’s a carpenter bee.” I explained, holding an open hand up toward where Bob was doing loop-de-loops.  But my repeated explanations aside, most people were not buying Bob’s reported status as a gentlebee-ing.  Let’s face it, an inch-long bee flying around you is hardly subtle.

Not but a couple days later, I came in to work and found a patio-style citronella candle lit near the entrance. Our manager had lit it in hopes of deterring Bob, who had been joined by another male.  Like two World War 1 flying aces, they were staging aerial dogfights.  “They’re not out to get anyone,” I told the other employees, “it’s territorial.”  That didn’t mollify anyone, but fortunately Bob prevailed and his rival left the scene.

“Wow, that’s a BIG bumblebee!” exclaimed a customer.

“It’s a carpenter bee.  They have the shiny, dark abdomens, like a brand-new pair of carpenter jeans.  Bumbles are furry all over.  See the white on his face?  That means he’s a male.  The males can’t sting.”  I’ve never been stung by carpenter bees or bumbless, and have even petted them.

My current computer wallpaper is my photo of a female — isn’t she just adorable?! (more story below):

A large bee with a black head and abdomen, and a gold, furry thorax nectaring on Queen Anne's Lace

A large bee with a black head & abdomen and a gold, furry thorax, nectaring on Queen Anne's Lace

Carpenter bees (Hymenoptera, Family Apidae: Xylocopa virginica) get their name because they dig tunnels in dead wood.  They use these for rearing offspring, and for overwintering.  Painting wood is the easiest deterrent for preventing structures from being bored into.  I couldn’t see anything in the garden center “tent” that would be a great place for setting up housekeeping (the only wooden structures nearby were thin shipping pallets), so I figured that Bob had decided that the garden center was the ne plus ultra of food resources, with its thousands of blossoms.

Like other bees, carpenters are valuable as pollinators, and like orchardists, you can buy (or make) bee blocks in hopes of attracting some.  Once in a while the bees will take a short-cut and “rob” a flower by chewing through the base to get directly to the nectar. (‘nother pix, still more story)

White-faced male carpenter bee stealing necar from Columbine flower

White-faced male carpenter bee stealing necar from pink Columbine flower

While the males are hanging around being territorial, the females are busy stocking their offsprings’ larder with pollen & nectar balls.  Each of their several eggs gets its own foodball and wood-pulp partition.  Once the larva have hatched, eaten up their food, and metamorphosed into adults, they then chew through the wee shoji-screens, crawling over their siblings to go out and start the process over again.

Recently, Bob was nowhere to be seen.  Our manager explained that when he was cleaning up the other night, he realized that the broom made a great fly-swatter.  Apparently I looked dismayed, because he went on to explain that something unexpected happened the next day.  “Bob’s brother or cousin or friend or who-ever moved in, several of them!”

This made me laugh.  ” ‘Nature abhors a vacuum.’ There was an opening in the territory!”

But our story has a serendipitous ending.  As the days have grown hotter, our manager brought out a standing fan to help keep everyone cool as they stand by the register.  Apparently carpenter bees are befuddled — or bothered — by the steady stream of air, and they left to hang around elsewhere.

“Oh, that’s fabulous! You worked with their behavior, not against it.  You always get better results that way, whether it’s insects, students, or employees.  That was really clever.”

The very model of a social disability

BayDisability has begun blogging about prosopagnosia, and how it affects her life.  Because hers is an acquired case, it has affected her profoundly.  (Amazingly, it’s not some strange story she came up with to create “lesbian drama”! Oy.)

I have to say that from the self-reports I’ve read, faceblindness due to injury is much more disabling than the developmental (genetic) sort, such as I have.  I think this is probably due to the fact that for those of us who have always been this way, our brains have adapted to using auxiliary clues from the start.

We don’t know any other way of identifying people than through their overall physical shape, gait, voice, hair style, mannerisms, and favorite articles of clothing.  We do however, spend our lives in a perpetual state of background free-floating anxiety due to either not knowing why we have problems, or being aware of our problems and then trying to consciously apply what coping methods we can.

This is not to say that despite our limited coping abilities, we don’t have the typical long litanies of embarrassing moments of not recognising people, of mis-recognising people (thinking a person is someone else), of “twinning” two similar people into one, of “losing” familiar people (even family members!) in crowds, of misunderstanding movie plots, of being totally clueless about celebrities, of being stressed to the gills with learning new job tasks as well as trying to reliably identify a couple of key people, of …

However, the person who acquires prosopagnosia has a much harder time with the socially disabling aspects.  And with faceblindness, it’s all socially disabling, and the “social model of disability” is apparent to a degree that warrants billboard-size attention.  The “social model of disability” refers to Read the rest of this entry »

For the first time in 28 years

I have not bought a Valentine’s present for my husband. I am divorcing him.

Disabilities can change how the processes of falling in love, joining, living together, loving together, and separating happen.

For most disabled people, their disabilities affect how others perceive them as even being interested or capable to find love or sex. (WTF?!)

For many disabled people, their disabilities can even change whether or not others afford them even the opportunities to find love or sex. (Again, WTF?!)

Although my husband and I both have disabilities that have changed how we are employed, communicate with each other and others, parent our children, or even sleep together (literally and figuratively), the divorce had nothing to do with our disabilities.  It’s just about the usual sorts of moral failings that can lead to divorce (even after the sensible year of counselling to assay changes).

Because in the end, love and sex do not happen because people are able or disabled.  They happen because all people are people.  And when love and sex quit, they happen because all people are people.  Just people.  Like everyone else.

This post is (slightly belated) part of Dave Hingsburger’s “Sexy Bloggers” blog carnival on disabilities and love/sexuality, over at his blog, Chewing the Fat.

You just don’t get it

A few summers ago, right in the middle of my graduate programme, I was hit with Mono and Lyme. Taking a shower was exhausting. I kept falling asleep in statistics classes, and in the lab where I tried to work. Putting thoughts together in any of my research analysis or writing, or even learning new concepts, was like stringing beads while wearing heavy ski mittens.

Even after submitting a letter from the doctor to my department head, he couldn’t understand why I couldn’t get things done, and when he did see me around, why I was staggering around and looking like “death warmed over”. He was of course, operating on the Willpower/ Mind Over Matter principle, where all one really needed was just More Determination. (And this was even in a biological science, where you’d think they would have some kind of clue!)

I got over the diseases. A couple of the most important things I learned from that whole experience were tied to Paula Kamen’s lovely book, All in my head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening HEADACHE”. One important thought is: “There is a difference between getting cured and getting healed.” Another is: “Acceptance is not the same thing as resignation.”

I also got a crash course in how little empathy some people have in real life, compared to the words that come out of their mouths. Of course, it was hardly the first (or last) time I had experienced such in life, just an event when things were painted with such broad strokes.

Weird thing is, the official word is that autistics lack empathy.  That’s the line, but there are plenty of people who beg to differ.

In an NPR interview, Temple Grandin had this to say about empathy:

Normal people have an incredible lack of empathy. They have good emotional empathy, but they don’t have much empathy for the autistic kid who is screaming at the baseball game because he can’t stand the sensory overload. Or the autistic kid having a meltdown in the school cafeteria because there’s too much stimulation. I’m frustrated with the inability of normal people to have sensory empathy. They can’t seem to acknowledge these different realities because they’re so far away from their own experiences.

Unlike someone with Antisocial Personality Disorder (sociopathy) or Narcissistic Personality Disorder who truly does lack much real empathy, the autistic person does not really lack empathy. Rather, they do not respond in ways that demonstrate empathy in typically recognisable fashion. This is in contrast to those sociopaths, bullies and narcissists that may demonstrate a lot of the shallow social-noise that appears to be sympathetic, but on the deeper level is really more about manipulation to gain something for themselves, rather than true empathy.

Just because someone doesn’t respond in the expected manner, that does not mean they lack the feelings we associate with those responses.

The term “empathy” is one of those words that carries several meanings, and is used in different ways. This conflation of meaning results in things like this issue of the Asperger’s/autistic person being described as “lacking empathy”. Plenty of parents, spouses, other family members and close friends will assert that despite diagnostic criteria, their person “really is loving” and “shows empathy” and demonstrates both passion and compassion.

So what’s going on here with this definition, and in the person?  Things like: Read the rest of this entry »

With a price tag like that, you know it’s what’s best

Would you pay more for name-brand headache medicine than the generic or store brand?  If your budget is like mine, probably not; after all, the tablets are the same, it’s just the packaging that’s different.

But on the flip side, what if your favorite practitioner recommends an expensive treatment that will help you or your loved one recover from a chronic condition? Not surprisingly, treatments with higher price tags make patients feel better, even when there are not any differences in the treatments, nor even when the treatments are just placebos!  Per research by Waber et al., (“Commercial Features of Placebo and Therapeutic Efficacy”)

These results are consistent with described phenomena of commercial variables affecting quality expectations and expectations influencing therapeutic efficacy. Placebo responses to commercial features have many potential clinical implications. For example, they may help explain the popularity of high-cost medical therapies (eg, cyclooxygenase 2 inhibitors) over inexpensive, widely available alternatives (eg, over-the-counter nonsteroidal anti-inflammatory drugs) and why patients switching from branded medications may report that their generic equivalents are less effective.

In other words, patients perceive more expensive treatment as being more effective.  This is in many parts “research as confirmation of what we already know”, also known as “A Duh! Study”.  (Which is why it was in the 2008 Ig Nobel Awards.)  However, this preference for expensive treatments can also be a post-purchase rationalization, where we have the unconscious tendency to rationalize why the things we have paid for were such good choices.

Human beings are subject to a large number of cognitive fallacies and biases of judgment.  We unconsciously deceive ourselves in a number of ways, which is why scientists must use randomized, double-blinded, and repeatable studies with falsifiable hypotheses. (The word “falsifiable” is somewhat confusing or misleading; it simply means that the hypotheses can be proven wrong, which is statistically safer than trying to prove them correct.)

Our brains love to find patterns — that’s how we make sense of all the sensory input we’re bombarded with — but we will also see patterns even when they don’t exist.  Even the most earnestly objective researcher can misinterpret incomplete data, or give more attention to data that supports their hypothesis than that which doesn’t.  This is why double-blinded studies are important, so neither the study subjects nor the data gatherers know who is in the treatment or the control groups.

Naturally, shysters will take advantage of people by Read the rest of this entry »

4 Stages You Don’t Have to Go Through

A recent article landed in my Google news aggregater, “Child’s Autism Diagnosis: 4 Stages You Will Go Through”.  Unfortunately, for all of its cheery helpfulness, it still manages to perpetuate some common stereotypes and misconceptions about disabilities:

When you hear that your child has been diagnosed with autism, the worst thoughts come to your mind. You can feel scared, lonely and overwhelmed. All of these feelings are natural when dealing with a new situation, but it doesn’t have to be terrifying.

Seriously.  The author assumes that the experience of getting a diagnosis is automatically horrifying; the first two sentence are loaded with negative words: worst, scared, lonely, overwhelmed, terrifying. Parents may feel these things at times, and for any number of things, including the sleep-deprivation of newborn care, or even dropping your child off for the first day of preschool or Kindergarten and experiencing the fallout of separation anxiety.  But the process of receiving a diagnosis is described like slogging through of an abyss of despair, with the “4 Stages” listed as 1.Denial, 2.Anger, 3.Grief, 4.Acceptance.

A problem with riffing on these “stages of loss” (familiar to anyone who has taken Psych 101), is that although there is evidence that many people do experience such upon receiving various diagnoses, the very presence of articles such as this may serve to reinforce the despair as much as they seek to lighten it.

How so?  Firstly, many people in various support industries related to disability (including educational and social work realms) are taught that Read the rest of this entry »

Not Flapping My Lips

(“Flapping one’s lips” is American slang meaning to stand around talking, usually about nothing important, or gossiping, e.g., the disdainful address, “Don’t you just be standing around there flappin’ your lips.” )

“All that is required for evil to prevail is for good men to do nothing.”
~Edmund Burke

“It is very tempting to take the side of the perpetrator. All the perpetrator asks is that the bystander do nothing. He appeals to the universal desire to see, hear, and speak no evil. The victim, on the contrary, asks the bystander to share the burden of pain. The victim demands action, engagement, and remembering.”
~Judith Herman

I’m planning ahead for a script to use sometime again soon, because like many people I suffer terribly from l’Esprit de l’escalier, and can never think of the bon mot or good retort or thought-provoking reply until the moment has long passed …

Sometimes when I get excited, I flap a bit. As in, my hands shake rapidly from side to side, causing my (long, limber) fingers to dually perform that single-handed clapping.  In the recent years, I have learned that “flapping” (done in many different ways) is one of those “stereotypies” associated with autism, or with Down’s, or with cognitive disabilities (mental retardation), or with any number of differences that are often socially ostracised.

Which to me does not make a whole lot of sense.  Seriously, WTF?  It does not harm anyone.  And if you have spent much time in North America and seen game shows like The Price Is Right, then you will have observed a lot of (ostensibly) neurotypical/normal people jumping up and down and flapping in their excitement at being called up to play.  But of course, someone will be sure to point out that is a “special circumstance” and that people who are chosen for the audience are selected because they are excited about the opportunity, and are outrageously dressed, and will generally perform in such highly exaggerated manner, and thus be good television fodder.  Well, perhaps.  But my point is that we all engage in stereotypies. (In a previous post, “Stimulating Topics of Conversation”, I noted that fiddling/stimming is another stereotypy that everyone does.)

Unfortunately, we also engage in stereotyping — it is almost impossible not to at some level, as creating such thought patterns is how the brain organises the world.  But we can be aware of and work against negative stereotypes that are socially harmful.

Of course, to deliver that reply effectively, I have to have a script that is not only thought-provoking and easy to remember (without tripping over the words), but is also SHORT.  And if you have read more than two of my posts, you know that brevity is not my strong suit!

But I know how to get around that in my brain. Read the rest of this entry »

The Crystal Ball Crack’d

The Kid recently took the ACT test, which like the SAT, is frequently used by colleges to determine scholastic abilities, and in his case helped place him for which college writing class he needed.  He had to ask his sister what the test was like, and her impressions about its difficulty level.  I could not personally provide any opinions, because I had never taken the ACT or SAT.

I never took them because no one thought I would go to college.

They made massive assumptions about my abilities and my future. So here’s what happened, and something to think about. I welcome you to please post comments, and more links to other positive blogs and sites.

My grades in secondary school grew worse over the years, and I had to re-take a semester in one class (English of all things, which in later years proved to be ironic when I became a freelance writer, with hundreds of items in print).

By this time in my life, my parents had divorced.  My dad lived in another state, and was even more of a non-player in my life.  Alas, my mother had spent years futilely trying to make me more “normal”, from requiring me to learn right-handed penmanship, enrolling me in a “charm school” at the local Sears & Roebucks to improve my feminine graces, and so on.  But as the years wore on, my faults (problems) became more and more apparent.  She no longer described me as “very bright”, but was quick to list all my failures and describe them in damning detail, until I was ready to vomit or pass out from the stress (though I never did, even though either would have been a relief).

By 9th grade it was apparent to all that I was not gifted scholastically, and the general consensus was that I was lazy, stupid at math, not trying hard enough, and acting up just to make her life difficult.  When she was drunk, my failures and interests and personality traits would be compared to her ex-husband’s, “you’re just like your father, the bastard”.  Even as much of a socially-clueless 14 year old that I was, I knew that these kinds of comments were untrue and inappropriate, and the problem was with her attitudes and her drinking.  But they still hurt, terribly.

I would not be diagnosed with ADHD, Auditory Processing Disorder, and Prosopagnosia until I was in my 40’s.  Such diagnosis hardly existed in those days; certainly my difficulties were not considered to be due to anything but my own personal failings.

No way, my family and school officials decided, could I be college material.  I could not keep track of my assignments, I still struggled to learn and remember my multiplication facts into 8th grade, and I flunked or barely passed classes.

Given my social difficulties and subsequent lack of dating, and even my utter lack of domestic abilities (mom warned me off taking a sewing class because doing so would “ruin my GPA” – grade point average), I was obviously not highly marriageable. This was the 1970s, and most people still thought along those lines — an astonishing number of girls went to college to “get their MRS”.

The goal then was to get me some kind of minimal trade training, so I would, as she fiercely reminded me many times, not be a burden on the family. It was made plain to me that once I graduated high school, and then later turned 18, I was to be out on my own.  I should not expect financial assistance from her.

So I was enrolled in typing, which was a miserable experience beyond the whole ordinary ordeal of learning to type on manual typewriters.  The room was a cacophony of noise.  The instructor was adamant about constant attention to task, proper posture, and graded with the intent on us producing perfection — as soon as a student produced a typographical error, then the score was made. (Additionally, the students’ pages were  held up to the light against her perfect copies to check centering and spacing). There were many days when I would produce an entire page that was otherwise perfect but for a typo in the second line, and my grade would be an F because I had such a low word-count.  Given my problems with developing manual speed, tracking text (near-point copying), attention, and transposing letters and numbers, I struggled to get a C grade.

But the clerical work that was deemed best for me also required taking bookkeeping.  Not surprisingly, this was also a very difficult class for me.  My aptitudes and interests were not really taken into consideration, because after all, even if writing and science and art were what I liked best, I had not done well in those classes, now had I?  Besides, clerical work was what my mother knew, so like many parents she expected me to follow occupational suit.

Unlike many such students, my story has a relatively happy ending.  I did manage to graduate high school, to everyone’s relief.  A year later, I even enrolled in an evening class at the local community college.  College classes were not easy, partly from my intrinsic difficulties, partly from not having the necessary study skills, and partly from not having a solid academic background.

But the glory of the American system is that such colleges provide opportunities for adults of all ages to acquire the these things, and to gain higher education. I worked hard, and slowly figuring out how I learned, which was not always in the ways that others thought I should study.  Sometimes I had to drop a class and re-try it later on, to finish it successfully. Later on in my 40’s I was to also get some of my issues diagnosed.

I now have a Master’s of Science. I teach college students.  No one would have expected this based upon my previous performance. (Employers who place near-complete trust in Behavioral-Based Interviewing, please note!)  And this point, amongst all the others about the perils of attribution errors, and learning disabilities, and dysfunctional families, this point is crucial:

A child’s future abilities cannot always be predicted,

when based upon their current abilities.

Many parents of children who have developmental disorders worry that their children will never be able to attend school, or finish school, or go on to college, or hold a job, or live on their own, or be loved by a partner, or have a family, or talk, or be potty-trained, or any number of milestones.  Just because the child cannot do the same things that their age peers can do, or are expected to do.

This is one of the biggest points of contention or discussion between the “autism community” (parents of autistic children) and the “autistic community” (children, teens and adults who are autistic, and many of whom are parents as well).  Even beyond the farcical assumptions that either community is monolithic with regards to attitudes and knowledge and politics et cetera, there are inherent issues that need to be mutually addressed.

One of the best resources for the autism communities are the autistic communities.  If parents go around just talking to other parents, especially those other parents who are consumed by the “Terrible Tragedy and Selfless Suffering Families” world-views, they may fall prey to this easy assumption:  If my child can’t do it now, he’ll never be able to do it, and our lives will be ruined.

Sure, not everyone takes it to that extreme.  Sure, there are a few children who do not achieve many of those life-goals.  But those lack of achievements does NOT automatically mean that their lives are ruined, or their families’ lives are ruined. They do NOT automatically mean that people cannot live relatively happy, healthy, and productive lives.

Please do NOT assume that not being able to use speech as a reliable means of communication is the same as not being able to think, or not being able to communicate, or not having anything to communicate.

Please do not assume that because a child does not learn in a traditional manner that they are learning “the wrong way”, or that they cannot learn at all, or that they must be taught “remedial learning lessons”.

Please do know that even when children have problems, and are slower to acquire skills, they are not doomed.

Please do not give up on them.

“Don’t talk to me like I’m an idiot.”

~First words (at age 35) of an autistic man [quote source]

I welcome you to please post comments, and more links to other positive blogs and sites. Kindly see the newly-updated “NOTES TO COMMENTERS” box in the top of the left sidebar for important information. Read the rest of this entry »

Are You “Slow”?

“I, myself, was always recognized . . . as the “slow one” in the family. It was quite true, and I knew it and accepted it. Writing and spelling were always terribly difficult for me. My letters were without originality. I was . . . an extraordinarily bad speller and have remained so until this day.”
~Agatha Christie

“I was, on the whole, considerably discouraged by my school days. It was not pleasant to feel oneself so completely outclassed and left behind at the beginning of the race.”
~Sir Winston Churchill

A recent post on the ASCD Inservice blog describes “Myths That Haunt Students”. The authors reference three points from Allison Zmuda:

* They see learning that comes quickly as a sign of intelligence and learning that requires effort as a sign of their own lack of ability.
* Students think school and life are disconnected.
* They think learning is an orderly process rather than a messy, recursive, ongoing struggle. Even high-achieving students will shy away from challenging tasks and embrace routine assignments, which they find more comforting, Zmuda noted.

These are fabulous points, and I would rush to buy the book referenced, if only I had the money and the time to read it (my current reading stack would literally be a meter high, were I so foolish as to stack the volumes in one place).

When we mistake speed for ability — or rather, lack of speed for lack of ability — we misinterpret a person’s intelligence and their ability to learn. Students who have difficulty processing multiple sensory modes will frequently have problems keeping up with lectures or rapid-fire instruction. Adult students who have been out of education for some time will also have problems because Read the rest of this entry »

Maths * Chem = Ranting^2

Why are so many math books poorly written? Even many of the physical sciences books seem to have this terrible dichotomy between the text explaining the concepts, and the text explaining the calculations. I suspect it’s partly because one person is writing the conceptual text, and another person is writing the calculations text. I also suspect it is because both are written by people who are naturally good at the subject, just like most maths, chem, and physics teachers are naturally good at the subject.

Well, you do want people teaching who are good at the subject. But as many of us have noticed, being naturally good at something frequently results in people who cannot understand why others aren’t equally good at it. Once in a while those adepts become snobbish, because obviously the rest of the world just isn’t smart enough to get the stuff like they are. Many of the others simply have little patience with students who “must be stupid because they can’t figure out easy things” and can’t understand the material from having the previous explanation repeated again.

Duh! If it didn’t make sense the first time around, why would repeating the same explanation make any more sense the second or third time around? What we really need is Read the rest of this entry »

Buzz Off!

No, “buzz off” does not mean that I am being grumpy and telling everyone to Go Away. There are apparently a lot of other people out there who are grumpy about Mosquitos, but not the insect kind. The story (like most) gets complex very fast.

So. There are some young people who hang out in front of shops or public areas and are annoying, even to the point of committing misdemeanors. This is hardly a new problem of urban settings; doubtless ancient Greek and Roman shopkeepers complained about much the same thing. In addition to the primary problems of what the yobbos / chavs / hooligans (pick your fave term) may engage in, there’s the secondary problem of their presence intimidating customers and driving away trade.

Of course, not all young people act like this. In fact, very, very few do. And young people, like people of other age groups, like to get together with their pals and socialise. Of course, when you’re young you don’t have your own place, and not everyone wants to hang around the living room where dad’s watching Top Gear or yet another history programme about some war or another. So kids hang around in parks, on sidewalks, in malls, and other public areas. And then people complain because shockingly, there are kids hanging around. Well, duh; few can afford to spend lots of cash at movie theatres or pool halls or video game parlors, and if you’re not spending, they don’t want you there.

Back in 2005, Howard Stapleton realised that he could use teens’ better hearing against them. In theory, young people can hear up to 20 kHz (20,000 Hertz), but as people age they lose this ability due to presbycusis. Although most older adults can pass a basic hearing exam with flying colors, such exams only test up to 8,000 Hz, because audiologists are concerned with how well people perceive common speech and environmental sounds. (This concept also assumes that those targeted have not had any hearing loss due to listening to loud music in vehicles, headphones, and / or concerts.) Thus, the Mosquito device was born.

According to a distributor’s description, these speakers broadcast a 17.5-18.5 kHz tone at 75 decibels. Although not damaging, the whine becomes very annoying after a couple of minutes, and those who can hear it usually leave after a few minutes, although the unit runs for 20 minutes before shutting off. It can be heard 15 meters / 50 feet away, with stronger models audible as far as 90 meters / 300 feet away.

The Mosquito device proved popular with a number of shopkeepers and other business owners; some 3500 units have been installed around the UK, to prevent young people from congregating outside of stores, rail stations, car parks, industrial areas, city parks, and even school grounds (used after hours). Now it’s being sold in the U.S. and Canada as well.

Naturally, there were protests about the use of the devices. The prototype was banned in its place of inception, Newport, South Wales. Although legal elsewhere, other groups have taken up complaint, and not just young people:

Scotland’s Commissioner for Children and Young People, Children in Scotland, and the Scottish Youth Parliament fully support the campaign launched today in England against the use of the Mosquito device.

So too is Liberty, the National Youth Agency, the Children’s Commissioner for England, which is spearheading the Buzz Off campaign.

Frankly, I find the whole idea of using sonic deterrents as weapons (attack devices) against young people to be abhorrent. These things target and punish all young people present for the actions of a few. You get what you give, so how is being deliberately obnoxious supposed to encourage better social behavior in others? We don’t like it when people go around playing their music too loud, so why is it okay to broadcast high-pitched whines that are meant to get on people’s nerves?

Furthermore, the manufacturers and users assume that only young people can hear these sounds, and that simply isn’t true. I’m 47 and I can hear such frequencies (despite the tinnitus), and a 75 kHz noise is also pretty damn loud, even if it’s not technically at the damaging threshold. If I came across a shop that was using this sonic attack, the shopkeeper would certainly get an earful from me! There’s too much noise as it is, without adding gratuitous noise.

It’s not that I don’t sympathise with business owners and other citizens who are dealing with the effects of antisocial or criminal behavior. But this kind of antisocial retaliation hurts everyone, and is blatant discrimination.

Piss-poor platitudes

There’s something about the intersection of the loss of a child and thoughtlessness that produces a dreadful lot of dreadful platitudes. But your child doesn’t even have to die — finding out that your child has an incurable disease or disabling condition can result in more horrible platitudes.

Some people will protest that, “Well, they mean well, so it’s really okay.” No. When someone says something cruel, or does something rude to another person, their “good intentions” don’t really amount to a hill of beans. Even using treacly god-talk doesn’t sugar-coat the insensitive words enough to make them palatable.

Finding out that you will have to learn how to do many things differently due to chronic illness or major disability involves some initial sense of loss for expectations of how life would be. But the situation is not analogous to having a child die. The parents have not “lost a normal child”. The child is not dead, but very much alive, and still loved. Furthermore, the child would not be “better off dead”.

Sometimes people pull out the platitudes because they want to “make things better”. But a few saccharine words is not going to help. The death of a child cannot be healed by the verbal equivalent of a bandage on a cut finger. When at a loss for words at the magnitude of someone’s grief, it’s okay to be honest and share that, “Oh, I’m SO sorry. I hardly know what to say.” And if you can’t think of anything further, then share a hug if these are hugging people.

After the initial shock, share memories of the child with the grieving parents, rather than trying to make the social “problem” go away by ignoring it. Don’t suddenly drop the parents of disabled children from social groups, as though the family has contracted something horribly contagious.

But please, don’t pull out the insensitive platitudes:

Don’t be so selfish; you still have your other child.

You can always have another one.

Children are not interchangeable, replaceable units, like dolls.

Having another child won’t somehow magically make a family “complete” — the family isn’t defined by the number of members, but by who they are. There will always be a sense of loss for the missing person.

God wanted the child with him.

What kind of deity is so selfish as to deprive parents of their child? What, God couldn’t have enjoyed the child’s presence more by watching it grow up with its family?

God’s punishing you for putting your desire to have children ahead of Him.

Make that selfish and vengeful. Where’s the “loving deity”?

It was God’s Will.

And you know this because … how?

Your child’s in a better place.

How is an early death better than a full life?

God never gives people more than they can handle.

Nonsense; there are plenty of people who have cracked under the strain of grief, falling to depression or sometimes even violence.

Everything happens for a reason.

True, there are causes for everything. True, people can create extra purpose in their lives in reaction to events that happen to them. But I cannot accept that a deity required a child had to die for its parents’ moral improvement.

Think of the money you’ll save; having one kid is cheaper than twins.

Oh for ~~ one doesn’t have children for budgetary reasons!

Guess what — I’m pregnant! It’s like God’s making up for the baby you lost.

Let’s blame the maternity hormones for that incredibly tactless, thoughtless remark, and hope that she has a full recovery.

Haven’t you gotten over that yet? You just need to pray more / work harder / think about others.

Grieving for the death of a baby or child is not something over and done in a few days. Really, one grieves for the loss of a loved one the rest of their life — it’s just that the grief becomes tolerable, and the memories more wistful than painful.

You’re lucky the baby died early — it could have been handicapped.

Being disabled is not worse than death.

It’s for the best — she / he would have suffered from being, ‘you-know’ … Retarded. Crippled. Deaf. Blind. Palsied. (et cetera)

Being disabled is not a life sentence of suffering.

Well at least you have your other, healthy child(ren). You could even try again.

If I have a disabled child, I am not about to discard them, nor decide that I have not succeeded in getting the “perfect” child that I deserve.

God gave you a special child to teach you something.

We all learn things from our children, and many parents find they learn unexpected things from children who have different needs. But such a platitude smacks of begin given a special-needs child as a prescription or punishment for a moral failing.

It’s just as well; so many sick preemies survive nowadays, and there’s too many special-needs kids being a burden on society.

The social burden is not special-needs kids.

The social burden is people who feel they have some special hotline to heaven. The social burden is people who think that death and disability are divine punishment for sins. The social burden is people who can only see the disabled as those who are a useless waste of public resources. The social burden is people who imagine that a disabled person cannot have a happy, loving, productive or even [otherwise] healthy life.

Why this Behavioural Observer isn’t a Behaviourist

I’ve spent hours observing and recording the actions and reactions of insects and humans. I’m a behavioural observer, but I don’t consider myself to be a Behaviourist. Despite the usefulness of Behaviourism for training animals (including humans) to perform particular tasks, I find that school of thought to be too limiting for understanding and helping people.

Some years ago when I was taking my MSc in entomology, I studied insect behaviour. One of the professors introduced us to Miller & Strickler’s “rolling fulcrum” model* for how insects respond. Essentially this idea states that there are internal factors (of varying strengths) that affect how much an insect responds to of excitatory or inhibitory stimuli. The example given was that even if you smell something really appetising, if you’re not hungry then you’re not going to eat it. It was presented as something profound, but my internal response was along the lines of, “Duh!” (My external response was to continue doodling triangular pursuit curves on the margins of my lecture notes.)

In other words, Read the rest of this entry »

Cross-Cultural Communiques

David recently posted the following conundrum in an essay:

How do you best convey experiences of living with a disability that are so alien to so many people? Where do you start? How do you convey challenges that people have never even considered?

This insightful — and sometimes “incite-ful” post, because it made me thoroughly annoyed on people’s behalf — reminded me of a handout I’d found while cleaning out old files. One of many available to university tutors, it was yet another authorless 12-point gem. (If someone does know the source, kindly let me know!)

The page refers to the assumptions we mentally trip over when working with people from other national, religious or ethnic cultures. I rather doubt that the author(s) considered how broad the cultural spectrum can be. One doesn’t readily think of the various Deaf cultures, but of course, there they are. I’m almost certain that they were not thinking of disabled people. Good heavens, even people studying various aspects of disability politics and history can’t agree on whether there is a “disability culture” or what it’s comprised of. Given the vast differences, definitions quickly break down into things like “autistic subculture” and debates thereof.

But nonetheless, this is still a spiffy list, so I’m sharing it with you all to mull over and run off with for your own purposes. This is the delight of blogging: cross-pollinating one’s brain with all sorts of novel combinations of ideas!

Cross-Cultural Relationships

1. What seems to be logical, sensible, important, and reasonable to a person in one culture may seem stupid, irrational, and unimportant to an outsider.

2. Feelings of apprehension, loneliness, and/or lack of confidence are common when visiting another culture.

3. When people talk about other cultures, they tend to describe the differences and not the similarities.

4. Differences between cultures generally are seen as threatening and described in negative terms.

5. Personal observations and reports of other cultures should be regarded with a great deal of skepticism.

6. One should make up one’s own mind about another culture and not rely on the reports and experiences of others.

7. It requires experience as well as study to understand the many subtleties of another culture.

8. Understanding another culture is a continues and not a discrete process.

9. Stereotyping probably is inevitable in the absence of frequent contact or study.

10. The feeling which people have for their own language is not often evidenct until they encounter another language.

11. People often feel that their own language is far superior to other languages.

12. It probably is necessary to know the language of foreign culture to understand the culture in depth.

 

Crazy People

Back in another lifetime, I did clerical work downtown in the Big City. One day the gal at the desk next to me came back from her lunch break and she said, “There’s a crazy woman down on the corner just standing there picking at the air.”

I thought this description to be odd, but Helen couldn’t really explain further. Full of ‘satiable curiosity, I decided to take my lunch at a nearby taco stand just past that corner. At first I couldn’t figure out who my coworker was talking about; there was just the usual crowd of professional, retired, and miscellaneous people hanging around the bus stop. So I bought a three-pack of tacos, and stood out on the sidewalk to munch them and watch the crowd.

A few minutes later I finally figured out which person was the “crazy woman” that Helen had referred to. Read the rest of this entry »

“For no reason”

(Coffee-spew warning)

“I don’t know; he just started biting the other kid for no reason. But you know, children-with-autism just do those things.”

“We were just going over the lesson when alla-sudden she just BLEW UP for no reason, and started cussing and calling me an F-ing B and threw her folder papers all over and stormed out of the room!”

“I don’t know what’s wrong with this kid. He’ll just pitch an absolute FIT. We tried to restrain him but then he starting kicking the para and screaming and banging his head on the floor. Honestly, he does. It’s awful, believe me. He’s just uncontrollable — if you want, we can set him off and you’ll see what I mean!”

These are re-created quotes, not verbatim from documentation. But I’m sure you get the idea. (The behavior specialist was naturally horrified Read the rest of this entry »

But it’s NOT the same

Dave Hingsburger recently had a very nice column about the pros and cons of labelling. He made some very fine points, including the key idea that, “the issue is how we value the difference that is labeled.” This reminded me of something similarly related, which is how we value the accommodations. With many sorts of disabilities, we have ways of getting around the internal disabling factors, and the environmental handicapping factors. Some of those ways involve assistive devices (ADs), also known as assistive technology (AT).

One of the problems we run into, sometimes unexpectedly so, is that our ADs do not “fix” the problem and make it go away. This is discouraging for the person who is newly diagnosed or newly treated for an issue, and who hoped that simply by getting some snazzy piece of equipment, everything would “be back to normal”. Well, no. Being disabled is the “new normal”. Arguing for, with, and at one’s assorted pieces of equipment is yet another layer added to our lives. Read the rest of this entry »

Attendance Required

Earlier this week I had to sit still in one place and pay attention for a longer period of time than I’ve had to do in ages. Man, I’d forgotten how utterly difficult that is to do! I had to not just sit, but “sit appropriately” on a hard wooden pew, and stay seated for three hours solid, and also pay attention to what a bunch of people were saying. I was part of a panel of jurors that had been randomly selected to go through voir dire for jury selection. Of the 24 people who showed up, 8 were finally selected to be the jury. However, all of the extra panel members (including myself) had to pay attention to all the voir dire questions to have our own answers ready in case any of us were to replace a dropped juror.

Sitting there all that time made me aware of how frequently I had little shoulder or head tics. And how much I wished I had a “fidget widget” to have something to do with my hands. And how much I jiggled my foot, and repositioned myself. And how much I wanted to sit there and rock from side to side, but feel inhibited to do so in public (even though I probably do rock a bit when I’m not aware).

There were some expected bad parts and unexpected good parts to the experience. Read the rest of this entry »

Learning Nothing

“I don’t know what to do with my son. You don’t understand what it’s like. He CAN’T LEARN. He’s been in school for FIVE YEARS and has learned NOTHING! I’ve been to all these meetings. It took him MONTHS of therapy to teach him how to sit down! He’ll NEVER be able to talk. He’s severe.”

This is a made-up letter. It’s a highly shortened version of letters I’ve seen a number of parents post on various discussion boards. It’s alarming on several fronts: the parent is stressed beyond their limits, and is of the belief that their son has not learned anything and cannot learn anything, and not surprisingly, has all but given up on the school he’s been attending, and also that because the child cannot [reliably] speak at this age that they will never speak or never be able to communicate by other means. The parent is certain that the child is DOOMED and will never mature into a capable, happy adult. (The grammatical and attributive errors of “he’s severe” also make my brain hurt, but that’s another issue.)

Judging by the complaints of parents who blog about their frustrations with schools or with their children, there is no lack of bad pedagogical examples.

You try something. It doesn’t work. You tweak it, and persist at employing Instructional Method X for a semester. For an entire year. New IEP, with a few tweaks, new room, different teacher. Still pretty much a variation upon Method X for another semester and another year, because X is the method that the teachers learned when they went to teaching college, and the tweaks were what the SpEd specialist learned from when they went to teaching college, picked up at a seminar, and heard from another SpEd specialist that worked on another kid who was also diagnosed with “A”. By all accounts, it should work.

Let’s work on that some more. Read the rest of this entry »

Small Comforts

“You know when you have a few good days and you begin to wonder whether the bad days could have possibly been as bad you imagined they were and then you have a few bad days and wonder how on Earth you ever were able to do the things you did on the good days? No? Well, I do.” ~ The Goldfish

It’s a pain. No, it’s many pains.

I’m getting over a migraine, which makes me just generally tired and gives me brief flashes of visual auras, pain twinges, inconsistent light sensitivity, and word retrieval problems when speaking. This rather much overshadows the arthritis business. I’m also trying to get a bunch of errands done and phone calls made prior to packing for a trip, which unto themselves are stressful activities. I also forgot to take my ADHD med this morning, so I’ve been in a what-was-I-going-to-do? fog all day long as well, above and beyond everything else. “Ain’t we got fun.”

But after I tracked down two cats and took them to the vet (putting the suddenly-hexadecimal cat into the carrier is always entertaining — picture here ), I went for my semi-annual tooth cleaning. I have no idea if I’ve had this particular dental hygienist before, having no memory at all for faces not seen daily, but she was nice enough to shut the window blinds for me on account of my migraine “hangover”. I was also due for some dental x-rays (roentgenograms), so the she draped me with the lead apron. Although having the bite-wings stuck inside my mouth is less than fun, I always enjoy the comforting pressure of the lead apron.

In fact, years ago when I realised that a lead apron was such a fabulous deep pressure aide, I got one from a retired dentist. When I stagger to bed with an incipient migraine, I compose myself in the dark room and drape it across my thorax. I’ve also used it on nights when I just can’t seem to settle down because I feel twitchy on the outside. The lead drape is one of several small comforts that I have found useful. Everyone deals with stress in their life, both the eustresses (the good sorts that help “push” us in beneficial ways) and the distresses (the bad sort, which need no further introduction). But we all differ in the things we are stressed by, and how those stresses affect us. My distress-reduction is accomplished by several means. Read the rest of this entry »

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