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.

Having Fun Pushing Limits

I was on the radio! :: hyperactive bouncing ::  You should listen to the show — there are links below.
Adrienne Lauby and Shelley Berman, co-hosts of Berkeley, California’s KPFA “Pushing Limits” disability program, invited Mike Ervin, advocate and blogger of Smart Ass Cripple and me to talk about “The Wild World of Disability on the Internet.” Is that fun or what?
Broadcasting is always giddy: I get to talk with interesting people I wouldn’t have otherwise, and the experience is recorded to share with all of you!
Between my ADHD and Auditory Processing glitches, I was worried about accidentally interrupting folks, but I don’t think we had too much trouble with that. It’s always curious to go back and listen to it myself, because one’s voice never sounds as low pitched as it does inside your head. But when I’m speaking, I’m on “live” rather than “Memorex”, and it’s cool to be able to rewind life and hear what happened.
Mike Ervin and I were unfamiliar with each other, but when you get four people together who are passionate about the same things (including hosts who can lead out introductory stories) there is no awkward stage — we hit it off quickly, and Mike has a wicked wit.
Of course, we could have easily spent an hour riotously remarking about activism, attribution errors and other topics. We did talk about those, and amazingly, with less than eight minutes apiece, we also talked about accessibility, myths, inspiration-p*rn, othering, home-care, how blogging “levels the playing field” and more. It was great fun!
(Oh, and related to a question on fidgeting, I mentioned an XKCD cartoon, which I’ve included — with descriptions — at the bottom of this post.)

You haven’t missed it — there are 3 ways you can listen now!

1. Click this link: Pushing Limits: The Wild World of Disability on the Internet 

2. Paste this URL into the address box for your mp3 player (iTunes, etc): http://www.kpfa.org/archive/id/82157

3. Click on this download hyperlink:

Pushing Limits – July 6, 2012 at 2:30pm
Click to listen (or download)

“RESONANCE” An XKCD.com cartoon by Randall Munroe, in 3 panels.

In the first panel, someone is sitting at a computer desk, and is disturbed by vibrations.

In the second panel, he turns and asks the person behind, “Excuse me, you’re jiggling your leg up and down. It’s traveling through the floor and making my desk resonate.”
The other person apologizes, “Oh, I didn’t even realize! I’ll stop.”

In the last panel, the first person reaches over to hand the second a piece of paper, and asks, “Actually, can you just shift the frequency up by 15%? I think you can get resonance with Steve’s desk instead.”
“Uh huh…” says the second, and the first guy continues, “Here are the calculations. Let’s coordinate and try to spill his drink.”

The mouse-over caption reads, “It’s really hard to control the frequency, actually.”

 

Cartfuls of Spoons

They’re out.  Or, Out.  We have the exquisite “Privilege of Being Clouted By Cabbage” and are navigating the hazards of the supermarket.  When things are done the way they’re supposed to be, going to pick up a few groceries is just as boring, or as Dave discovered, lonely, for disabled people as much as it is for everyone else.  But sometimes it isn’t, such as when Wheelchair Dancer finds herself navigating the hazards of anonymous donors that leave awkward brochures under her windshield wiper, and then dealing with the even more awkward social fallout with the clerk who’s assisting her.
People with a variety of disabilities come to the store to get groceries, movies, dry cleaning, take-out food, postage stamps, floral arrangements, and because it’s this time of year, garden plants, which is why I am working there.  I shouldn’t be surprised, but I am bemused to report that I realised that people with physical ailments are shopping at the store alla time!  After all, that is why we have some of those electric carts, in addition to automatic doors, ramped paving, lower check-writing stands, supposedly-accessible bathrooms*, et cetera.
Most of the time I just interact with the public as a “normal” garden center employee, but sometimes we are also interacting with that subtle overlay of disability, which entertains the social scientist part of my brain.
Being the token horticulturalist, I answer questions, help customers plan flower beds and suggest suitable plants for locations.  In addition to working the register, watering, deadheading and “facing” the stock (moving pots towards the fronts of the benches to fill in holes left by customers), I work with the others to come up with æsthetically-pleasing displays of the plants.  (Although there is no way of hiding the fact that the corporate HQ plagued us with a plethora of Pelargonium, a visual red tide of geraniums.)
I’ve seen plenty of plant displays at a variety of other stores, and have found their long lines of benches to be annoying.  It’s not just that endless tracts of pink & purple Petunias, orange & yellow Marigolds, and red Geraniums are mind-numbingly dull to the point of dampening any sort of inspiration for coming up with container or bedding combinations.  It’s that the long lines of “benches” block traffic flow.  You feel like you’re trudging up and down the maze of a ticket queue, unable to grab some pots of more-interesting Corkscrew Rush or Calibrachoa tha are hidden over there two aisles over.  It’s hard to break out of the march to exit stage left to the register (till), or even quit to go over to the entrance into the store.  The long lines of benches are especially boring for children, who have little more than a view of the edges of the benches and the pots, with little respite in sight.  (I’ve taken to offering children cups of the cold water from our water cooler barrel, as hot, thirsty children are cranky children.)
Worst, when at these other stores run out of available bench space, a lot of the pallets of potted plants just end up dropped by the pallet jack where-ever there’s room on the ground.  This means that the aisles are not really planned, so sometimes there are narrow dead-ends, or aisles blocked by broken bags of mulch, or the plants are simply hard to reach because they are way down on the ground or are way deep in the center of the pallet.  They are not accessible.
For a few days, we too of a dozen pallets lined up at the edge of our lot, albeit with sufficient aisle space.  It really “made my brain hurt”, because the plants had been shipped all higgedy-piggedy, with shrubs, grasses, annuals and perennials all mixed together.  There were Daylilies in four different places around our lot!  The flats of shade-loving Wax Begonias and Impatiens and sun-loving Verbena and Vinca were all jumbled by species and color!  (And OMG, still more Geraniums.  And Creeping Phlox, which only looks nice when it’s blooming, and now we have enough to landscape a highway interchange.)
But thankfully, I’m not the only one who has a strong interest in making the endless flats of plants look more interesting, and be more accessible. We’ve been stacking pallets or propping them up on cinderblocks to put the plants into easier view and reach.  (Plus, they’re also easier for us to clean and water — ergonomics, w00t!)  We’ve been making sure that the aisles are frequently broken up into side-paths, and we try to keep the aisles 3-4 feet wide so carts, strollers and wheelchairs can get through.  It seems to be working well; every day we get compliments about how good the plants look.
But what makes this place pleasant to work for is the concern for helping our customers.  Sure, it’s store policy to be helpful (doesn’t every business flog that slogan?), but we are glad to break from running the register or watering to carry things out to the car, or load up bags of mulch and rock, or show you where the Verbena is, or explain the differences between the four varieties of white Petunias.  When someone has their hands full, we grab some empty flats, and pull carts (buggies, trolleys) over to make things easier.
It’s this “serve everyone” approach that makes helping people with various disabilities so much easier.  One of the other clerks knows American Sign Language, so Deaf customers are sure to look for her (my ASL is rather limited).  When the gentleman in the power chair thanked a coworker for carrying stuff out to his van, I was tickled to overhear him say, “No problem!  We do that for everyone.”  Because we do.
Sometimes the “disabled community” moments are colored in large brush strokes.  An older man in a wheelchair came by in search of some herb seeds, accompanied by two women who were of the “care-taker” rather than “personal assistant” mentality.  Although neither said anything obviously untoward, there was still a patronizing aura, that his desire to go shopping was being honored but that they were still “humoring” him.  It made me uncomfortable, and I kept trying to scan the interactions in the triad to figure out what was going on.
But the women were intent on asking me questions of their own, even as they were simultaneously going through the motions of helping him.  “Here’s someone who can help you.  He’s looking for some seeds.  Tell her what you’re looking for.  Do you have any seeds?  Do you remember what it was he wanted?  Ooh, don’t you just love those pink flowers?  Isn’t that what you got on your desk?”
“Well I dunno, but it’s not flowering any more.  Was you looking for parsley?  He was wanting to grow some stuff from seed.  You sure gots a lot of plants out here.”
Trying to track all this verbiage flying by was making me dizzy, and I just wanted to focus on finding out what the man came to get.  The customer himself was having some expressive difficulties. (Who wouldn’t have, being around those two all day!)  I knelt down on a knee so I could speak with him face to face.  I had to.  I had to disengage myself from the chatty care-takers who were now trying to ask me random questions unrelated to the needs of my primary customer.  I had to be able to focus on what he was asking for, which meant watching him speak.  And I had to honor him personally as the customer, not as some second-class accessory.
My knees cracked noisily, and I knelt down on one knee, and we conversed, just the garden center clerk and the customer who wanted parsley seeds, and who considered and then decided against the Doubled-Curled or Flat Italian Parsley seedlings.
After that moment, I stood back up and we were sucked back into the vortex of the chatty care-givers, who asked me some confused questions about houseplants, and then led/followed him over to the main store entrance.  I hoped he would be getting the things that he wanted this evening.
Sometimes the community moments come by quietly.  I was checking out a couple flats of annuals and several perennials for a woman, cleaning off some old leaves and blossoms and chatting as the register processed her credit card in its own slow time.
“This is going to take me several days to get it all planted,” she offered.
“Well, that’s always a good thing to do anyway,” I offered, affirming her wisdom.  “It’s those marathon gardening sessions that break our backs.”  The register finally finished hiccoughing through the electronic transmission and spat out her receipt.  I picked up her potted rose bush, rested it on a hip, and then deftly tipped up the flat of annuals to balance them on my other hand.  (It only sounds tricky; in reality the flats are just boxy grates, and I can curl my fingers into them.)  “Here, I’ll carry these out for you,” I said, leaving her to handle her purse and a couple quart pots of perennials, then added,  “I can’t garden for ten hours solid since I got arthritis.”
“Thanks.  I have RA and can only do so much at a time.”
“Ah, yeah,” I commiserated.  “You have to make dinners ahead, because the next day you’re too exhausted from gardening.”  She nodded, already tired from just the idea of the ordeal ahead.  “It’s fun, but you just run out of ‘spoons’!”   And then I loaded things into her car and we swapped the mutual thanks.  My attention turned to the gardening work of my own, left uncompleted or never even started.  Oh, and errands.  Here I was at the market nearly every day, but I kept forgetting to get my arthritis medicationn refilled!
“Hey Andrea,”  piped up one of my coworkers, “it’s nearly time for you to go on break.”  This clerk is a good guy; he’ll remind me when something is coming up, he’ll remind me when it’s time to start, and even after I’ve forgotten it.  He asks me if I remembered to clock in, and reminds me (several times) to copy down the next week’s schedule before leaving.  It sure is wonderful to have garden center clerks who are so helpful, especially when you when you’re having seriously distracted & forgetful AD/HD days!
* I’ve never navigated the women’s restroom in a wheelchair, but there are still the stupid doors to wrangle …

The return of Rudolph

Because I’m up to my tuchis here getting ready to prepare the chicken tamales, baklava, mince tarts, potato latkes and whatnot, here’s a re-run of a holiday-oriented classic post (from 2006):

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. (links to show posted on YouTube; Rudolph introduced at 4:06.)  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.

Going Mobile

Here, grab a cuppa and settle down, and I’m going to tell you a story … oh, pass me those scissors; I’m going to work on this quilt, too.

Once Upon A Time,

a long, long time ago (well, 25 years ago, but that’s before some of you were born), there was a bunch of disabled people who were tired of waiting around for some Fairy Godmother to grant them wishes, because you know, like that’s gonna happen! Nowadays we might call them folks, “uppity crips”, and boy howdy were they “uppity”! Why, they wanted crazy stuff, like being able to ride public transit. Yesiree!

So.  This is the story: Those folks got together and started PROTESTING, using civil disobedience.  (You have to admit, it’s pretty dang clever using sit-ins and such, especially for some folks who come with their own chairs!  NO, they didn’t all use chairs all the time; accessibility is about lots of things, not just parking spaces and curb cuts.)  Anyway, these folks created ADAPT, which stood for American Disabled for Accessible Public Transit.

(Moment’s pause to re-thread needle.)

Well, that took a few years, but it worked so well, they weren’t going to stop there! Continue reading Going Mobile

In Which We Stop by the Letters E and A

(Thankfully this is a much pleasanter alphabetic tour than when we visited the Letter D or the Letter R.)
I am pleased to announce that I have had TWO awards bestowed upon me!  (“Aw, shucks…” she blushes.)  So without further ado (because these are inadvertantly WAY overdue), I would like to explain them, give my own nominations, and importantly, add in an extra stipulation.
Ideally, I would add in some lovingly-crafted paragraphs describing intriguing details as to why each of my nominees so deserved the award.  Alas, I am up against a deadline from a college secretary who needs my handout masters for copying, and we all know that making secretaries annoyed is very bad form.  Instead, I shall aim for a few tantalising adjectives and let you enjoy discovering some new, fabulous blogs! Continue reading In Which We Stop by the Letters E and A

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. Continue reading The Crystal Ball Crack'd