More universal than you might think

All those years of spending hours thinking up that brilliant retort to their insults … and instead of that stunned silence of acknowledgement you had anticipated — you just got more bullying.

Again.

*~#~*

Don’t play their game.

Short eye contact, a nonverbal response of incredulity, and then ignore them.

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.”

 

That’s Not Helpful!

Here’s a riddle:  how is a broken foot like being pregnant? 

(No, it has nothing to do with wait times.)

Mid-October I entirely missed the last two steps of the stairs to the basement floor and BLAM! Didn’t even experience the slip and fall. Hurt so much I didn’t even cuss, and only OW’d so folks would know I’d been hurt. My ankle really hurt, so I limped to my bedroom and pulled on an ankle elastic (which I keep in my purse because being hypermobile means easily spraining things). Hobbled around the rest of the day, giving it the usual Rest-Ice-Compression-Elevation between doing stuff. That was a Friday.

The next day it was really swollen, with a purple bruise covering the entire upper surface, but it wasn’t horribly painful like a migraine. I called out from stocking work at the grocery, rested more, and tied on a foot brace. My son-in-law said it might be broken (it’s good to have a medic in the house).

Guess what? Broken bones are not always screamingly painful. Whoda thunk?

Sunday I went to the walk-in clinic, and yeup, two of my metatarsals were broken, in a displacement fracture, no less. (Meaning, the bones weren’t even lined up, but were slightly ajar.) They put on a splint. The next day I went to an orthopedist, and after due examination of the clinic’s radiographs, the doc sent me to get a boot-type cast, and make follow-up appointments. On my end, I remembered to get a ‘script for a temporary Disabled Parking permit. Whee.

That was the easy part. But OMG the annoying part is not the broken foot itself.

The annoying part is dealing with the public,
those discourteous, “well-intended”, damnably useless interactions!

Because you see, when you have a physically-apparent injury, one’s body suddenly becomes part of the public’s purview; they are free to make enquiries, “do help to you”, “charmingly” engage in the social distancing of pity, and give malcommendations.

(Hopefully I won’t use up my month’s share of sarcasm quote marks, but one must hazards risk.)

It’s intrusive. Being visibly disabled [sometimes] means losing status to where anyone can ask most anything of you.I don’t mind answering questions from family, coworkers, and friends about the event and my recuperative status. But seriously, why should every random stranger feel privileged to details? Were the issue nephrological, nobody would want to know what was wrong with my bladder, or why I had to make so many bathroom trips, about the thrills of contrast dye, or what my urologist recommended. Yet like when bearing a belly bump, it’s open season. WTF?

It’s unaccommodating disaccommodating. I had not even left the orthopedists office when I was first treated to un-wanted, un-needed, un-help. I had used crutches before (decades ago when I stepped into a rabbit hole, and you can imagine all the er, lame jokes that transpired), and it took but a couple of days to re-acquire my expertise. When I’m using crutches and opening a push-door, the dance goes as follows: swing my body around to back into the door and push against the bar with my buttocks, then after creating the useful gap, balance on the strong foot to turn again, and swing the crutch on my working side around to prop open the door with the rubber foot. Well, the doctors had removed the splint and were sending me down the hall to get the boot. So with my fractured foot all bare, I approached the door to the waiting room and had gotten as far as butting open the door when –

– some idjit hanging around the waiting room decided to be “helpful” and without saying anything, bounded over and suddenly yanked the door open! Mind you, I was balanced on one foot and leaning backwards against the door, so guess what?! Well, I may be clumsy (it comes with the large territory of hypermobility) but thankfully I also have lightning-fast reflexes, and was able to crash to the floor safely. (Dancers and gymnasts know whereof I speak.) That’s not helpful!

And then we have the other unwanted bits of the social model of disability.

It’s … infantilising. Such as when I’m doing something totally mundane, just minding my own beeswax and swinging through a store to get to the restrooms, when some complete stranger feels the need to comment upon my mobility,

“You’re really good at that!”

Except it doesn’t sound at all like admiration at my ability to execute stunning pivots around pyramids of produce, but rather like praising a school child who had colored between the lines on a Kindergarten worksheet.

It’s patronising. When I took advantage of the store’s motorcart to shop for groceries and am cruising at a whopping three miles per hour in a straight line down the middle of the bread-and-jam aisle, and receive a smarmy,

“Wow, look at you go!”

And of course, it’s pitying. 

“Oh, you poor thing!”

There is the assumption of Injury As Tragedy; they have to know when it’s going to be better. Well, what if it’s never going to get “better”? What if it’s permanent, or chronic and intermittent?  It’s the sort of pity where people can’t see past the “broken” part and are uncomfortable; they’re full of Schadenfreude, relieved that the Bad Thing didn’t happen to them. Sometimes the coin of pity they pass along is a kind of magical thinking, token payment to Fate to avert similar disaster.

That’s not helpful.

And let us not forget the malcommendations, a subject of such amazing WhatTheFuckery that it deserved its own post. To wit:

You can tell that you’re running into the lousy end of helpers when the need for social recognition outweighs and over-rules the negative feedback from the recipients. You can tell when they lose the “take it or leave it” perspective and insist that what you need is what they have to offer. Protesting the inappropriateness of their pet form of aid is often useless; you get condescending responses about how they are “specially” qualified, and how you are being unappreciative, and cannot know what is best for you simply because you are of the recipient class.

Such dread Helpers and Fixers want not just the ego-boost and recognition; they want status, and will even sometimes create their own imaginary status markers as proof of why others should recognise their special knowledge and munificent public service. At worst they are narcissistic, at best, merely clueless.

One of the oddest things I have run into with such types is not just the insistence that their pet solution is what is needed, but that any solution they have heard of should be helpful and tried. The advice is coming from them and they want what’s best for you, therefor it’s automatically good advice. I have at times been left so amazed that someone could suggest doing something so far off base with my needs, so profoundly inappropriate, that I was all but sputtering. It wasn’t just an off-target bit of advice, an unhelpful recommendation. It was, I decided later, a malcommendation, a bad recommendation (usually inadvertent) but still bad advice nonetheless.

To take that abstract description to a real-life example, I offer this:

I was at one of my jobs, and a coworker said she would do thus-and-such for me. “Oh, no-no, that’s okay; I’m fine,” I politely dismissed, because I had already sussed out how I was going to perform my duties with my own modifications. But no, she was insistent; after all, she was (at her other job) a medical assistant of some sort,

“No no — I know all about that,” she asserted, her smugness wafting over in a perfumed cloud.

::CRINGE::

Look, as a medical assistant or what-have-you, you don’t know “all about that”; it’s obvious that the doctors know LOTS more.

Secondly, you’re presuming that you know what is best to do TO me, or to do FOR me. Apparently you’ve not realised that I don’t want to be a passive recipient of your “expertise”.

Seriously, when doctors-medics-aides-ancillary-healthcare-professionals know things I don’t know, that’s great! That’s why I’m here visiting your officies. But please, presume some self-awareness of my actual needs, and competency on my part. Work WITH me.

Otherwise, that’s not helpful.

Saved by bureaucracy

( A follow-up on my shaky employment status, as described in a previous post, The Catch.)

So now I’ve twice seen the ENT (Ear, Nose & Throat doc, not tree-folk), to figure out if the vertigo, worsening tinnitus and hearing difficulties are related to Ménière’s, or “just” migraines.  At those visits I also spent time in the audiologist’s booth:  “Huh?  Sorry, I can’t see what you’re saying.”  “Oh,” he replied jovially, “this isn’t a vision test, it’s a hearing test.”  Ha, ha.  Very funny.

(Have I mentioned that lately one of the cable channels is messed up, and maddenly, we’ve not had any closed-captions on episodes of CSI ?  Listening to TV is hard enough with fussy babies who want bouncing, much less auditory processing glitches and tinnitus.)

And then something wonderful happened:

The day after my first ENT visit, it occurred to me that it might be useful to ge an official letter from the doc to give to my various bosses.  So I called in my request to the office nurse and picked it up from the receptionist and passed out copies to my supervisors and those got fowarded to Human Resources people and –

SHAZAM!

I was saved by bureaucracy.

(I mean hey, it’s gotta happen sometime, right?)

Because apparently being treated for Ménière’s disease (note the careful legal waffling on diagnostics) falls under the umbrella of an American labor law known as the The Family and Medical Leave Act of 1993 (FMLA).  Basically, taking care of sick family members, birth, adoption, or one’s own illness (covered by the Act) is protected so the worker can get unpaid sick leave without worrying about job security.

I cannot be dunned for absences related to bouts of vertigo.

My principal was of course very polite and helpful in the process of explanating this unexpected coverage.  I was asked about accommodations that might be helpful.  Alas, none of the things suggested by the Job Accommodation Network are applicable to my job (but that’s a great site if you need ideas for accommodations for most any sort of affliction or difference).

However, I was giving some 60 days of sick leave for absences related to — and only to — Ménière’s.  Despite my initial relief, my job status still feels as wobbly as my gait some days.  Stay tuned for further developments.

What you want

I still feel queasy when I remember the words.

Children have a certain disempowerment simply because they are young — they are naïve, less learned, and lack perspective. But this transcended childhood.  It sank past the boundaries of adult to child, or parent to child, and trampled my self-identity and self-determination.

My mom had found a way to get past what some would have called the “fortress” that isolated me, that natural preoccupation with whatever I was doing and naïve self-centeredness, that self-ism or autism that was greater in me than most anyone else.

“Oh, you don’t want to get grilled cheese again!” she chided me, but her sharp glance to me denied the lightness in her tone.  Her expression would then change, as it so often did when she spoke to other adults, with the swiftness of flipping a social light-switch, and she turned to pleasantly address the waitress “She wants the ham sandwich.”

Or: “You don’t either, have a headache.  You’re just fine.  Now go get your work done.”

And in 9th grade, in a dizzying double-bind: “You don’t want to be a park ranger; quit flapping that survey!  You’re going to sign up for bookkeeping and typing, and you’re going to start getting good grades in math class, too.”

Increasingly, I was told how I “really” felt emotionally or physically, or told me that I could not possibly be feeling something, that indeed I actually was feeling.  Invalidation is when an emotionally abusive person distorts someone’s perception of the world, or when the abuser undermines their factual processing by casting doubt upon the facts of the events.  Denying what happened or the analysis of what happened, minimizing the importance of abusive statements or trivializing the recipient’s responses are also means of invalidation.

Over the years, my inertia increased.   I could never tell when I was expected to have a preference, or rather, to just to express a preference, since apparently I wasn’t really allowed to have them.  When it wasn’t convenient to others for me to express a preference (to speed up shopping, or to allow my mom to appear generous), I was soundly rebuked and told what I “really wanted”.

My stress and depression increased throughout my teen years.  When I should have been learning independence and skills and decision-making, I was thwarted, and then paradoxically, received further insults because of my lack of independence.  Never knowing when I was supposed to express an opinion, or what my opinion was “supposed” to be, I frequently gave up and just shrugged, unable to verbally express the “appropriate response”. I frequently did not know what that “appropriate response” was.

Worse, with my lack of being able to perceive all those subtle social cues that pervaded both my warped home environment, and even the subtle social cues that comprise such an overwhelming part of interactions in the “normal” world, I was becoming increasingly fatigued with the burden of shamefully lacking in whatever psychic means would have informed me.  It was of course, all my fault, as so many people were quickly willing to inform me.

My mom had found a way to get past my natural self-centeredness, not by inviting me to understand others’ worlds, but by trampling my personal boundaries of selfhood.  Although children have a certain disempowerment simply because they are young, they, like all self-conscious organisms, are entitled to — nay, required — that their selfhood be respected.  Denying that someone else might have opinions worth considering, much less that they are even allowed to even have opinions, violates that central inalienable right.

~#~

Years later as an adult, I was still running into much the same problem of “reality shifting” (being told by others what my personal reality and preferences were “supposed” to be), even if it wasn’t expressed as blatantly or as frequently.  One such event became (in retrospect) a tipping point — not in events, but in perceptual clarity.  I finally realized that such events were equally disrespectful, even if they lacked the overt denial and double-binds.

My (now ex-) husband was telling me that I shouldn’t want to do jury duty because it might interfere with my vacation schedule or my work schedule.  I shouldn’t want to do jury duty because it didn’t pay as much as my job did.

But I realised in confusion, that this wasn’t about what I wanted to do, to participate as a citizen, to help make a positive difference in justice, and to be able to observe another facet of social functioning.

Ostensibly, it was about what he wanted from me, in terms of convenience in the family schedule, and what he wanted from me in terms of my earnings. (Unbeknownst to me at the time, we were horribly, deeply in debt.)  I wasn’t denying that it could make these differences in scheduling and earnings — but really, that wasn’t the issue here.  Those “reasons” were just distractors.

Rather, he was trying to enforce my actions based upon his wants, and dismissing my wants as being unimportant.  He was trying to convince me that his wants were my wants.  We all have wants, but I didn’t think that mine should have been dismissed as being unimportant.

The solutions he proposed were ones compromises between the requirements of the law, and what he said I wanted.  But effectively, I was the one being compromised, because his announcement denied my interests and enabled him to get what he wanted, rather than what would have enabled both of us.

I got tired of being told what I should want. I got tired of being told how I should feel.  I was suffering from a chronic case of spiritual fatigue. Constantly negotiating to be taken seriously was an exhausting way to live.

I don’t miss those aspects of my life; my whole system twitches when I perceive someone telling me what I “should be feeling” or “really want to do”.

Now if only I could get out of some of these other double binds that infest my work life …

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 …

Piques and Valleys

So, I’ve been rather absent from bloggery lately due to spending evenings sorting through vast boxes of paper archives, moving books, applying for jobs to keep a roof over our heads, or attempting to sleep off this virus. I now have removed a cubic meter of paperness from our house, and transferred a few hundred books from one room to another. I still have the virus (or maybe a second one, as our students have not the best hygiene), but not the second job.

(Now, if anyone is looking for an experienced secondary or college tutor or after-school care for special-needs children, let me know via andreasbuzzing care of my gmail account.)

But aside from all that, there have been some thought-provoking ups and downs in the news that I don’t want to let pass before they become “olds”:

In an brief article in the New York Times, researchers from the Albert Einstein College of Medicine studied some 11,000 third-grade students, and found that 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 Can’t

(These quotes are real, at least to the gist of what was told me.)

“You can’t — no, no whining!  You just sit here next to me and wait quietly for the doctor.  You are NOT going to bother people by grabbing all the magazines and lining them up on the floor.  Don’t even ask ‘why’ — I’m tired of all the Why’s.”

“Will you quit repeating things over and over. What the devil’s gotten into you?”

“Oh, just stop flapping about every time you’re upset!  Your baby sister doesn’t go around doing weird things like that!”

“Sit still, Andrea, no rocking.  We don’t do that in school.”

“Stop doing that!  You’re going to kill the grass, spinning around in circles like that.  Now come inside and quit making a spectacle of yourself.”

“What were you thinking, Read the rest of this entry »

Hope against fear

I rarely get choked up listening to speeches.  I’m just not a terribly sentimental person as far as patriotic stuff goes.

Except for this bit from Obama’s inauguration speech today:

We will restore science to its rightful place, and wield technology’s wonders to raise health care’s quality and lower its cost. We will harness the sun and the winds and the soil to fuel our cars and run our factories. And we will transform our schools and colleges and universities to meet the demands of a new age. All this we can do. All this we will do.

Oh, I do hope so!

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.

Comfort-able

For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.

“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show).  “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.

Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics.  To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms.  To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.

We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.

We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.

Crip chicks like we don’t diss on our disabilities, we diss from our disabilities.  It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.

I need more social life, but there’s so much of ordinary socialising that I find enervating.

I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it.  But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy).  My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.

I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.

I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.

I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?”  The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.

I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort.  It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms.  True friendship enables positive interactions, and supports needs and affirms and enriches our lives.

Here’s a toast to real friendships!

Excuses, excuses

WARNING: THIS POST CONTAINS CUSSING.

If such righteous indignation will damage your precious shell-like ears,
then ye’d best hie off somewhere else.

“Who they hell are you to complain?”

“Everyone else is thrilled to have such crap circumstances.”

“But that’s the way we’ve always done it.”

“We’re treating everyone ‘fairly’ by giving everyone the same crappy environment.”

“Everyone else just sucks up and copes with the crappy environment, or doesn’t use it. You’re just being whiny and asking for special favors if you don’t, too.”

“If you try to modify your crappy environment to make it more usable, then everyone else will want to do that, too, and we can’t have that kind of thing going on.”

Okay, in real life the stupid excuses we get are not phrased so blatantly.  There’s usually some kind of artificially-flavoured-and-colored fluffy nonsense-phrasing hiding the real meaning.  That, or the excuses aren’t even given directly, but phrased indirectly with dismissive facial expressions, gestures, trite homilies, or vague references to (sometimes nonexistent) business regulations.

Amazing, isn’t it?

Or, perhaps not.  Not amazing, because Read the rest of this entry »

Dark, stormy days

It’s not just the weather.

Christschool’s recent post, “Fleeting Innocence, Captured Before It’s Gone” got me thinking and connecting distant points, much in the manner of the orb-weaver spider that connects a broadening spiral of nodes across our back door each night.

We slide further into a scarier world.  It is not just a world where there is less freedom and diversity plus more violence and hate-crime, but rather a world that not only publicly accepts and condones, but even demands the necessity of violence.

It’s there in the realm of education, where the requirements for instruction and inclusion have created new opportunities for some spiteful people to create long-lasting terror for those forcibly obliged to attend.  When children are harassed and bullied and tormented in school to the point they finally react, their persecutors (and those who allow such events to continue) strike back and complain, “We must be allowed to forcibly control and harm those misbehaving children so we can ‘protect’ everyone.”

It’s there in the realm of employment, where the openness of accommodations and efforts of ordinary people to use them for work, shopping and leisure has provided some people with new bases for the discrimination and harassment of their coworkers, employees, and customers.  “They shouldn’t be there if they don’t want to deal with the problems they’re going to create by existing in the public sphere.  It’s too much money or trouble, or uses up resources that Real People need.  They should just stay at home or be gotten rid of.”

It’s there in the realm of national security, where anyone who is suspected of activity can be detained for years without legal process, and tortured as well.  Even ordinary, law-abiding citizens cannot expect to have the same safeguards for rights and liberties that they used to.  “Freedom isn’t free.”

Whereas violence was previously ignored, or dismissed as unimportant, or officially diminished (downgraded) as being less severe than it was, now we have an increasing number of situations where violence is seen as not only inevitable, but also as excusable, desirable, beneficial and even necessary.

Freedom and safety are obverse and reverse of the same coin; when we seek to increase one, we lose more of the other.

Sadly, as economic and political times get more anxious, groups of people withdraw back to their tribal units in paranoia.  The backward, rigid end of conservatism or tribalism reacts to uncertainty and fear by enforcing greater controls.  To some, eliminating tolerance for the Other and superstitiously making sacrifices to appease divine forces seems to be the only way to ward off Bad Things from happening.  Somebody has to pay.  It must be Somebody’s fault.  If Somebody who isn’t behaving exactly as the codes specify is punished, then divine pleasure might be gained.  If Somebody can be blamed for causing our problems, then swift and great revenge is appropriate and balance will be restored.

But scapegoating and harming the few of the outgroup does nothing to ensure that all are safe.  Hardly anyone in the larger public will even listen, and most don’t even want to hear what’s really happening.  We are sinking in insidious evil that is frosted-over in colourful “truthiness” sugar-coating, and is obscured by galas of newslessness about celebrity foibles and the nonsense over manufactroversies.  The bits that do get reported are so shouted-over with “spin” that great chunks of the public can’t even hear them, much less realise the cognitive dissonance.  Such platitudes are just the 21st-century version of Orwellian Newspeak, where we are being sold the terrifying message that

“PAIN IS SAFETY”

Don’t you believe it.  Be careful when there seems to be a break in the clouds; sometimes it’s just the eye of the hurricane.

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! Read the rest of this entry »

When “Humor” is Not A Laughing Matter

When we watch old movies or programs, read old books, listen to old audio recordings, it quickly become apparent that tastes in humor change, mostly due to evolving senses of what is appropriate for being laughed at. There are racist and sexist and disableist jokes that are only painful to hear, because it is embarrassing to realize that some people find/found their humor in the ridicule of demeaning others. When the “Jokes you cannot tell in mixed company” have turned into “Jokes you wouldn’t even want to tell in any kind of company”, you get some hope that maybe society is growing up … just a little bit.

Or, not.

An upcoming movie is such an example of humor that fails its efforts to parody. Much of comedy has to be “cutting edge” to have the surprise value.  It pushes at the borders of acceptable behavior, and relies on our ability to laugh as a means of dealing with stress.  Treading the edges of propriety can be rich source, but can also backfire if the comedian does not have a good sense of the audience and of the purpose of their material.

Satire is a particular type of humor; by definition it is designed to “make fun of something” — but to a purpose.  It illuminates personal and social problems that we had not really thought about or could not easily discuss, and cleverly uses humor to deflect some of the tension that would have otherwise occurred.  Its tools are heavy irony and sarcasm, puns and wordplay, and parodies and comparisons.  Properly used satire is wit that seeks to improve society, rather than simply demeaning people. But satire can be misinterpreted.  Sometimes the result is more serious than mock-serious, and the audience does not understand that the performer is not really advocating, or believing in what they are presenting.

Comedy can also be misused when poorly-done attempts at humor are sometimes passed off as “satire”. There is a big difference between laughing with someone, and laughing at someone. Attacking someone and then saying, “Oh, it’s just a joke; whatsamatter, can’t you take a joke?” is not true humor. This is “humor” derived from a feeling of superiority, using shame and derision. As I said, satire is wit that seeks to improve society, rather than simply demeaning people.  Parody can be a part of satire, but just parody is not necessarily satire.  Parody can easily slide into snide efforts that not only lack sacred cows, but also lack sensibility and purpose.  Just because you can say something doesn’t mean you should.

And that’s where we seem to be with major parts of this Tropic Thunder movie, that seeks to make fun of many foibles of the movie industry and the whole genre of war movies.  Granted, those are certainly rich sources for parody.

But the line gets crossed when 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 »

School “Discipline”?

(Coffee-spew warning;
swallow beverage before reading.)

I’ve been mulling over this post for a while now, and then several things reached critical mass, including a comment by a tutee, the recent post on Alex Barton (“Mend the Link”), and some internet articles listing “common questions asked in teacher interviews”.

Oh, plus this wayfinding sign displayed on the end of a “stack” at a library. The numbers of course refer to the Dewey Decimal subject classification. I like to think that whomever printed up the sign appreciated the ten-tonne irony; I also wonder just how many people actually notice it.

(Post continues below picture)

Apparently one of those common teacher-interview questions runs along the lines of, “How do you maintain classroom discipline?”

Wow. That sort of phrasing gives me flashbacks of Read the rest of this entry »

Mend the Link

A horrifying news story: a little boy in Florida kindergarten class was publicly humiliated and ostracized by his classmates, at the urging of their teacher.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

There are so many ways to mistreat those who ought to belong somewhere. These means of intolerance, of expressing prejudice, range from the most passive to the most active. But even the passive ones are cruel when they are intended to be exclusionary. The outright active ones are the most vile.

You can be Read the rest of this entry »

Hate Speech: Not Just For Strangers Any More

(Apologies for unsettling anyone’s recent meal.)

My news aggregator came up with this doozy of a quote the other day. It was an editorial reply to an article about Kathleen Seidel, and I’m not going to quote the entire letter. (Follow the link to read it yourself — if you want to reply to the author, do so on that newspaper’s reply page.)

I am one of those parents who has watched my autistic son go from being a vegetable to becoming human, thanks to chelation.

Okay folks, let’s get this straight.

These are vegetables:

These are children:

It is quite insulting at the personal level, and damaging at the social level to describe people with autism or another other condition as being “vegetables”. Doubtless the author believes that their child has improved due to the effects of an unproven “treatment” for an unsubstantiated diagnoses (e.g. autism as mercury poisoning from vaccines). But even if the diagnosis and the treatment actually had any factual basis, that would still not make such comments appropriate.

How would YOU feel if your parents described you as a “vegetable”?

Or as “having rotting brains”?

Or as a “train wreck”?

Or that your condition “relentlessly sucks life’s marrow out of the family members”?

Or as “an empty shell”?

Or as “soulless”?

Or that “Autism is worse than cancer in many ways, because the person with autism has a normal lifespan”?

Or as having “mad child disease”

Or that you “would have been better off aborted” because regardless of your aptitudes or potential skills, your existance is automatically assumed to be a “burden on society”.

I’m not making these terms up; you can google them. People with disabilities face enough stereotyping, discrimination, abuse, bullying, and are murdered more often than those without. (I’m not using hyperbole; click here or here.) Describing disabilities in such sensationalistic terms and derogatory ways does nothing to help people become better educated, better integrated into society and employed, or become better accepted in their schools, workplaces, social organisations and families.

More than that, one really has to wonder, What kind of parent describes their child in such insulting ways? And does so to the entire world? Such treatment to children over their lives does not bode well for their psychosocial development, that’s for sure.

When you hear people describing their family members, their students, peers, coworkers, or anyone else they know in such terms, take a moment to ask them,

  • Why they use such descriptions?
  • Do they really believe it, or are they just repeating something they’ve heard?
  • Would they want to be described that way?
  • How else can they describe their frustration or disappointmnet with events in life without insulting people like this?

But most of all, we need to be mindful when we speak up about such hate talk, and not use similarly disparaging terms. We don’t want to become that which we despise.

(A request to people commenting: please use appropriate language — follow the guidelines described in this post.)

Catapulting to Conclusions

Because you can get there so much faster if you use a big machine to throw you right over annoying factual hurdles in your way.

I’ve been meaning to dissect this issue for over a week, but a lot of things have been happening over here. A recent news story has prompted a lot of discussion, some of it rather ugly. The short of it (and the news article in the Chicago Tribune is not terribly long) is that a 29-year old woman identified only as “K.E.J.” has been granted an appellate opinion in her favor. The woman experienced a traumatic brain injury as a child, and according to the wording of the article, “cannot be left alone to operate a stove or perform most household chores”, although by having that bit of information alone, our perceptions of her are biased because it does not mention what she is capable of doing. Her legal guardian, an aunt, had filed a petition with the court to have her (fallopian) tubes tied. All three judges on the panel were unanimous in their decision against this action.

“Tubal ligation is a particularly drastic means of preventing a mentally incompetent ward from becoming pregnant,” Judge Joseph Gordon wrote in the 36-page opinion. There are “less intrusive and less psychologically harmful [birth-control] alternatives.”

The readers’ comments were much longer than the article, and many were downright rude. This situation is so fraught with over-generalisations and false dichotomies and conflations that it fair makes me dizzy. The biggest and most common fallacy of the lot was the combined Read the rest of this entry »

Potpourri

Updates on several stories:

In a post from almost a year ago (“That Kind“), I discussed three cases of discrimination against autistics. Cindy Earnshaw was an animal control officer and has Asperger’s, and is now filing a suit against her former employer, the city of Overland Park.

Another old post (the wheels of law grind v e r y slowly, indeed) was about “Waiting For GINA”, the Genetic Information Nondiscrimination Act.  The bill passed the House of Representatives last year, and has just been passed (unanimously!) by the Senate, and awaits signing by Dubya.  Keep your digits crossed or whatever …

More good news:  just in case you were flying ’round the dark side of the moon and somehow missed the news, Kathleen Seidel has won her Motion to Quash the absurd SLAPP-type subpoena against her, which also required information related to dozens of bloggers from her of the Neurodiversity.com Weblob blogroll, including myself. w00t!

An update to a recent post, “A shot in the arm, A slight kick in the butt” about vaccine hysteria and rising rates of highly-infectious and dangerous diseases.  A couple years ago we had mumps breaking out in several states, and now there is largest outbreak of measles since 2001, with at least 72 people in 10 different states around the country reported as having been infected (mind you, that’s just the rate of officially diagnosed and reported, which may be less than the actual prevalence), and of those people, 14 are so ill they had to be hospitalized.  The article states,

Before a vaccine was introduced in 1963, more than half a million people got measles in the United States and 500 died annually. Thanks to the vaccination program, measles is no longer endemic in the United States, and ongoing transmission of the virus was declared eliminated in 2000.

Of all the infectious diseases that can be prevented by vaccine, measles was and still is the most deadly, and is the cause of half of the one million deaths that could be prevented. The World Health Organization says that,

Children usually do not die directly of measles, but from its complications. Complications are more common in children under the age of five or adults over the age of 20.

The most serious complications include blindness, encephalitis (a dangerous infection of the brain causing inflammation), severe diarrhoea (possibly leading to dehydration), ear infections and severe respiratory infections such as pneumonia, which is the most common cause of death associated with measles. Encephalitis is estimated to occur in one out of 1000 cases, while otitis media (middle ear infection) is reported in 5-15% of cases and pneumonia in 5-10% of cases. The case fatality rate in developing countries is generally in the range of 1 to 5%, but may be as high as 25% in populations with high levels of malnutrition and poor access to health care.

I’ve also previously described the various fallacies around the conspiracy theories related to vaccines in my post, “Epidemics of bad science, vs Epidemics and bad science”. There have been studies done in four countries showing no causality between vaccines and increased rates of diagnoses of autism spectrum disorders.

Well, off to deal with the crisis du jour … more later.

BADD But Not Rude

Blogging Against Disablism Day, May 1st 2008

I did it!

Today I actually put into action my previous plan. It wasn’t long* or eloquent, but it was polite. A student made a remark about doing something “retarded”, and I asked in a sympathetic tone,

“Please don’t use that word. You can say you’re doing something foolish, or that you’re tired, or even just being human. We all have moments like this.”

This post is a part of the annual BADD, Blogging Against Discrimination Day, which is being hosted at Diary of a Goldfish. I spend a lot of blogging time discussing various disability issues, but for BADD I wanted to do something outside of the usual analyses. Like in my example above, I thought it would be useful to offer some alternatives to disability- or difference-related words that are frequently used not just as insults but also as disaparaging terms e.g. retard, retarded, tard, moron, cretin, lame-brain, spaz, mong, lame, having two left feet, cack-handed, blonde, gay, queer, psycho, schizo, short-bus, gyp, et cetera ad nauseam.

Note that I said as disparaging terms; saying someone is gay to mean homosexual, or that your cat is lame because it has a leg in a cast is one thing, but dismissing something as “That’s so gay,” or “That’s a really lame excuse,” is quite another. (I will confess that I have used “lame” in this way because I wasn’t really thinking about it, but I’m not going to any more.)

In any regard, the acid-test is simple: when you are using a word that describes a group of people, or a characteristic of [a group of] people, and are using it as an insult, that is rude. The reverse is also true: if you are using an insulting term and ascribing to everyone in a group, that is stereotyping and rude. These negative words perpetuate social stigmas and stereotypes against people with disabilities. Using them continues to dehumanise people. If the characteristic or attribute is something that a person cannot [easily] change, then insulting it or using it as an insult is wrong. (Meaning, it’s always open-season on ugly neckties, barring describing it with these sorts of words.)

It is not enough to sit around and kvetch about what’s wrong in the world; we must also offer things to do instead. So, here’s a starter-list of other words to use. Not only do they not reference the negative stereotypes, but they are also less hurtful words — they take the event and keep it within the realm of ordinary human fallibility: things we all do. In this way, we don’t distance ourselves from other people as being other people — we just comment upon their actions.

  • inattentive
  • foolish
  • unwise
  • ill-considered
  • rash
  • silly
  • impetuous
  • foolhardy
  • reckless
  • clumsy
  • awkward
  • inept
  • sorry
  • flimsy
  • implausible

I would also like to direct your attention to The “R” Word Campaign.

* Not long? Shocking, I know. I’m not always as loquacious in real life as I am in print.

Don’t say that word

I am fetching one of my teaching props, or retreating to the whiteboard to make a quick diagram … just doing something besides speaking at the moment, when one of my students accidentally knocks over her soda can.

“Sorry! Just a retarded moment there,” she apologises into the sudden quiet, snatching the can upright and then grabbing some tissues from her purse to blot up the dribbles.

I freeze. Suddenly at a loss for words. Not for a lack of things wanting to say, but for having too many things to say, and everything getting into a verbal logjam.

RETARDED

All the momentum of being in my teaching-presenting groove evaporates. It literally evaporates, leaving my skin all clammy, and a chill jolts up from my tailbone, snapping my head and shoulder back in one big tic. My hasty breakfast curdles in my gut as I have visceral flashbacks of childhood abuse.

The R-word.

Omigawd I hate the R-word. I hate being called a Re-tard.

To retard means to hinder or delay. Various of my scholastic and social achievements have been delayed, but that never made the word appropriate. In the vernacular it’s meant as a slur, an insult, an assertion that someone is of subnormal intelligence. It’s the N-word of special education. Once-upon-a-time the word acquired a specific diagnostic meaning; someone who was “mentally retarded” had an IQ of less than 70. But whether or not the term is, or was, applicable to me or anyone else present is not the issue. Not even, and especially not, people with cognitive impairments or learning disabilities want to be called Retards.

She had not called me retarded. She hadn’t even directed the comment at anyone else. I would be extremely upset if she had.

But all of my responses are clogged up together in my verbal output buffer: Read the rest of this entry »

« Older entries

Follow

Get every new post delivered to your Inbox.

Join 371 other followers