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 …

ADD-ing new perspectives

My daughter is sailing rather gracefully through her pregnancy — well, as gracefully as one can when they have reached the “beached whale” stage that is the third trimester.

And yet, as with many pregnant women, she is experiencing some “third trimester brain rot”, that intermittent or semi-chronic reduction in frontal-lobe functioning.  Meaning:

  • forgetting important things you meant to do
  • not packing things you meant to take with you somewhere
  • getting sidetracked and forgetting what you were doing a few minutes ago
  • moments of being adrift when you lose track of what you were about to do
  • dysnomic moments of losing words or names you normally have on the tip of your tongue
  • being spectacular at some higher cognitive facitilities (“Look at this great post-colonialist literary critique I just wrote!”) and then realising that you suddenly can’t remember how to do something really simple (“Why are my pants pockets wrong? Oh, my pants are on backwards.”)

I’ve yet to read why this happens, aside from sleep issues or “It’s The Hormones”, that generic disclaimer for all things annoying during pregnancy (or indeed, between menarche and menopause).

The good news is that the brain fog isn’t permanent.  I reassured her that “third trimester brain rot” usually starts to go away after the baby sleeps through the night.  She looked at me suspiciously; surely “third trimester brain rot” should go away after the baby is born?  But then I reminded her about the chronic sleep deprivation that is nursing a baby every two hours.  (Were it not a normal part of human development, such sleep deprivation would surely be outlawed under the Geneva Convention.)

Of course, it doesn’t help that she’s finishing up her college senior capstone project, and it would really be useful to get a solid night’s sleep, or to wake up from a long night’s sleep feeling more rested, or to be able to schlep all those literary refs around campus more easily, or to not spend 33.3% of her life preoccupied with peeing. But, there it is.

On the other hand, we have had some bonding moments that go beyond shared maternity.  One day she was complaining about the general forgetfulness and fogginess, and I pointed out, “Hey, now you know what it’s like for someone with ADD.”

“Omigosh, I couldn’t stand it,” she replied, dismayed at the idea of being permanently stuck in such a state.

“But the thing is,” I explained (somewhat defensively) “when you have ADD or ADHD, that’s what it’s always been like.  That’s what you’re used to.”  The point being that one doesn’t feel the same sense of loss when it’s a life-long condition, compared to a late-onset disability.

And despite the obvious impairments, there are some positive aspects to AD/HD, due to the different functioning patterns of the brain.  There’s the hyperfocus, abilities to make different associative and intuitive leaps, and often a visual thinking style that lends to a variety of design strengths.

Having done through a few re-iterations of this conversation, there seems to be less of an “Oh noes!” reaction, and more of an appreciation of the chronic difficulties that I and other people with ADD or ADHD face.  Not only that, but I think the reasons for some of my demands for structure and routines that I developed as she and her brother were young, are becoming more apparent to her.

Maybe there are just some “mom-things” that one doesn’t appreciate in quite the same way until becoming a parent.

On the other hand, there are still a lot of things I do that bug her, and we must ever keep re-negotiating our relationship, especially as we continue to live in the same house, but with changing roles.

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 »

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.

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 »

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 »

I Will (not) Overcome

I’m not dissing a great protest song. I am however, getting really tired of the whole “overcoming one’s disability” cliché. For someone who does spend a lot of effort dealing with issues, that may sound odd. Why don’t I want to “overcome” my problems?

To overcome one’s disability does not just means to succeed in doing things in life that are personally difficult. It also carries the social and verbal subcontexts that one has not only succeeded, but also Read the rest of this entry »

Rudolph Redux

I’m trying to paint a small bedroom (doing so slowly, over the course of the day), which means no time for blogging.  But it’s also that time of year when the “Rudolph the Red-Nosed Reindeer” animated Christmas show appears on television.  There was always something unsettling about the whole story of this reindeer with the glowing nose, and it wasn’t until late in my own high school years that I figured it out.  Here’s a link to my post from last year, “Games People Play (off and on the court)“.

Some things never change.  ::sigh::

Liberation by Disability: the paradox of Competency and Inclusion

“Because there is no way for good people to admit just how bloody uncomfortable they are with us, they distance themselves from their fears by devising new ways to erase us from the human landscape, all the while deluding themselves that it is for our benefit.”
~Cheryl Marie Wade

Disability is usually defined by what a person cannot do. But outside of the normative social realm, disability is really about how a person does things differently.

Within the cultural status quo, the onus of being “acceptable” for consideration to being included by others, is placed upon the person in question, rather than by those who are creating the standards and are choosing to accept or not. Frequently, inclusion must be “earned” by first Read the rest of this entry »

Wicked Good

This is SO cool! The Disability Rights Commission put together a video (split into Parts 1 & 2). The official description for Talk:

The award-winning ‘Talk’ portrays a society in which non-disabled people are a pitied minority and disabled people lead full and active lives. Jonathan Kerrigan, of BBC’s ‘Casualty’ fame, plays a business executive whose negative preconceptions of disability are dramatically shattered.

“Coffee-spew warning”: their official description doesn’t begin to describe the wicked-good bits; they’re absolutely spot-on with digs at disablism!

This particular version is both subtitled (open-captioned) and signed. I think that’s signed in BSL; someone kindly let me know. Be sure to scroll downpage for the Part 2.

 

But it’s NOT the same

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

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

Animal Farm

Yes, that “Animal Farm”, the book by George Orwell. That’s what I was reminded of, or rather, I was reminded of the famous quote, “All animals are equal, but some animals are more equal than others.”

Painting walls certainly gives one time to think, and I was stuck on the annual Muscular Dystrophy Telethon. Jerry Lewis is the comic who for years has been the host of the annual MD Telethon broadcast on US television. The program itself is designed to be a real tear-jerker, prompting people to send in money out of pity and guilt and good intentions. Lots of people hate the program. We hate the paternalistic attitudes that perpetuate the whole medical model of disability, and reinforce the warped picture the equates disabled people as helpless, hopeless victims needing cures and charity, rather than accommodation and equal social standing and social rights.

In the negatively stereotypical telethon world, the disabled person can only be brave by quietly clinging to others and not advocating for themselves, by staying hidden out the way and not asking for equal access, and by cultivating “hope” that someday they can be “cured” to become normal, thus regaining their status as a full member of society and become a real person.

Well, medical cures and preventions are well and good, but are nowhere near soon, and what people really need are more practical things, the equipment and accommodations and acceptance into general society that will let them live their lives. No one wants to put their life on “hold” waiting for some possibly non-existent, or distant future mythical-magical cure. No one wants to be stuck at home, much less in an institution, and thought of as a horrible burden, a non-functioning person who has nothing to contribute to their family, a non-working person who has nothing to contribute to their workplace, a non-sexual person who has nothing to contribute to their spouse, or a non-adult person who has nothing to contribute to their children.

Jerry Lewis plays up the pity card heavily. I’ve previously discussed the various social problems created by pity, so I won’t go repeating myself on that score. What choked me up (in disgust, not in sadness) was his “half a person” quote. It originates from the September 2, 1990 issue of Parade magazine, from the article titled, “What If I Had Muscular Dystrophy?”:

When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being a half a person … and get on with my life.

Ick. That’s when the Animal Farm parallel hit me:

All humans are people, but some humans are more people than others.

Half a person. Not a real person. Not a full citizen in society, but someone second-class. Forever dependent, focused upon all the things they cannot do, always left out. And why are people left out? Not because they’re disabled, but because of the entrenched bigotry against disabled people that permeates our cultures. Simple things that should be ordinary, practical, sensible things, are instead viewed as horrible hardships upon everyone else. Problems are seen in a warped world-view of false dichotomies: either the person cannot do something the normal way, or they get cured and then they’ll be able to do things. There’s no accommodated way of doing things in that unrealistic story.

I can’t stand to watch the program. I can’t stand the crass exploitation, seeing children (and their families) used as tragi-cute pawns for pathos. I can’t stand to hear Jerry Lewis snivelling. I can’t stand to see the whole routine repeated year after year after year, the horribly treacly music, the pleas to “save Jerry’s kids”. The program is a tear-jerker, and Jerry Lewis is a jerk.

“It is an uncomfortable truth, in social work, in government activity, and in charitable endeavors, that actions which are intended to help a certain group of people may actually harm them.”
~Laura Hershey

Is it CC?

Description: The Closed Captioning symbol, a black frame in a horizontal rectangle, with a white television screen shape inside, displaying a pair of letter Cs.

This icon is used in North America to denote television programming that carried the accessory closed captioning signal. (I like to give artists credit, so I’ll mention that it was designed by Jack Foley, a graphics designer for that closed captioning pioneer, public television station WGBH of Boston, Massachusetts.) I’m pleased to see this icon on video boxes or in a television guide by a show listing, because it means the program is captioned, i.e. subtitled. Captions aren’t exactly the same as subtitles, although the two terms are often used interchangeably. Captions also describe other important auditory information, such as the type of background mood music, that a phone is ringing, there’s a knock on the door, or putting a musical quarter-note symbol by the words to denote that someone is singing, rather than speaking. The captions provide necessary clues to understanding the activity onscreen.

So … who cares? Read the rest of this entry »

What I Learned From the Bugs: Alienation and Othering

“Great truths are sometimes so enveloping and exist in such plain view as to be invisible.” ~Edward O. Wilson

I went to study Entomology, and four years later found that I had discovered far more about my own species than I had about insects and other arthropods. What I learned about humans was enlightening, and often very disquieting.

Frequently, if you can’t see something, it’s because it seems normal and appropriate. Alienating and Othering so permeates the many facets of culture as to be invisible.

Take for example writings about people, either individuals or groups. These can be works of fiction, clinical accounts, self-help or parenting or therapy books, historical or sociological analyses, in fact, any sort of book whatsoever that refers to people with differences. (I was going to say “differences from the norm” but we also find this in books about women, and surely half the population has to be considered a “norm” from a sociological if not a statistical perspective.)

Frequently such accounts use the omniscient writing perspective, which makes it very easy to Read the rest of this entry »

Colony Collapse Disorder : Blogging Against Disablism Day

This post marks Blogging Against Disablism Day. (Yes, I’m late getting this post up. It got postponed after finishing audio-recording the last chapter of a textbook this morning before going to jobs #1 and #2, and after getting groceries, and after making dinner, and after unloading moving boxes, and after more-or-less-sitting and watching an episode of House with the family. I’m so lazy.)

(photo description: close-up shot of a fluffy, golden honeybee sitting calmly on a person’s hand)

 

 

 

The honeybees are in danger.

I don’t care; I hate bugs!

Too few people with disabilities complete their education or are fully employed.

That’s not my problem; I don’t know any of Those People.

Curiously, these two things are more related than you might imagine, at least on the social level. Read the rest of this entry »

The Glass Box

It’s a strange hollow, invisible kind of feeling. As though I could fade away just sitting there, because my own personal reality has so little bearing on what happens.

There it is again in the after-school period. Read the rest of this entry »

“Cyborg Cool” Versus “Crip Pity”

Observing human society is a never-ending fascination, because people are always doing the weirdest stuff. Social memes are maintained because people accept, use, pass along, and perpetuate attitudes and the behavioural responses that go with those attitudes. Sometimes those behaviourally-expressed attitudes are maintained simply by the very powerful force of social inertia – they exist because no one pauses to say they shouldn’t exist.

Sometimes no one pauses because the collective cognitive dissonance isn’t being noticed.

Here’s one that has been entertaining my whimsy / befuddlement / concern for a while now:

Bluetooth Earphone = Cool VS Hearing Aid = Pitiable Old Fogey

If you’re not familiar with the item by name, Read the rest of this entry »

Ecological Adaptation and Disability

While soaking my aching joints in a hot bath, it occurred to me that as an organism, I am not naturally suited for the environment where I am living. It’s below the freezing temperature outside, and I don’t hibernate or have enough fur or feathers to keep me warm, plus I would have extreme difficulty acquiring enough food to eat with just tooth and nail. Furthermore, human young are born at any season, and take years to rear. From a purely biological perspective, you would think that this hominid species would be limited to foraging family groups living in tropical areas. We are in high contrast to other intelligent, tool-using species that are well-adapted to their environments.

In biology, there are a lot of different means to achieve the same end. All living organisms need to acquire particular kinds of molecules and the energy to assemble them into useful materials so they can grow and reproduce, and also be able to get rid of the kinds of molecules they don’t need; if they reproduce sexually then they need to find another organism with compatible genetic material; and lastly they need to be able to fend off other organisms and to protect themselves from abiotic (environmental) forces that interfere with these activities. Organisms are “successful” by how well they adapt to the available ecological niches, or how well they can create or exploit new kinds of niches.

Cetaceans (whales, porpoises, dolphins) and proboscids (elephants) are nearly-furless, polyphagous mammalian species that are well-adapted to the ecological niches they inhabit (“polyphagous” means an animal eats a variety of foods, which increases the chances for successful foraging or hunting). They have relatively large brains for their body size, and are intelligent animals with long memories, good learning and problem-solving abilities, and forms of language. Hominids (chimpanzees, gorillas, orangutans) are furred polyphagous mammalian species that are well-adapted to the ecological niches they inhabit. Hominids also have relatively large brains for their body size, and are intelligent animals with long memories, good learning and problem-solving abilities, and forms of language.

Ecologists refer to such species as being “K-selected” or “K-strategists”, because the numbers of these animals will (under natural conditions) come close to the “K value”, the carrying capacity of the local environment. That means that the population numbers remain fairly high and stable, and this is reflected in the animals’ ability to live a long time and be able to care for a limited number of slow-maturing offspring. The intelligence, knowledge and learning ability, and forms of language contribute to that ability to rear those offspring, and to pass on knowledge in forms of culture.

In some contrast, the fourth hominid, the human, is a nearly-furless, polyphagous, invasive mammalian species that is poorly adapted for most of the ecological environments that it inhabits. Humans are also K-strategists, although being an invasive species with high adaptive abilities, sometimes exceeds the local carrying capacity of its environments. Because of this, humans have the ability to change local and world-wide environments to a far greater degree, and in a shorter period of time, than any other organism.

The only reason why the species is not limited to foraging bands living in tropical areas (the primæval “Eden”) is because we can create so many tools that compensate for our various deficiencies. We have been able to expand our niche beyond that which is biologically natural by taking tool-making far beyond the immediate-problem-solving level that other animals employ. Social insects such as termites, ants and bees create structures, farm fungus or herd aphid livestock, transform raw materials into honey, structural waxes and papers, but the individual species are still limited by their requirements for specific ecotones.

When the “naked ape” is disabled by not being naturally-adapted to its current environment, it responds by creating long-term tools. We create clothing and shelter to cope with colder temperature ranges. We manipulate food resources by herding, farming, hoarding, drying, fermenting, and freezing, and also by selecting, breeding and displacing species far from their natural places of origin. We create machineries of transport to move ourselves and our things. We create tools to compensate for limitations of sensory perception, to increase our ability to get information about our environments. We create tools for the greater memory/storage and dissemination of cultural information.

The human is a terrestrial anomaly because it actively seeks to put itself into disabling environments, and creates tools that will allow it to live and thrive in those environments. Orcas and other dolphins don’t create tools that will allow them to live on land, and elephants don’t make tools that will allow them to colonise temperate zones. Meanwhile, there are millions of individual humans who would not be able to physically survive in their natural environments, and I don’t just mean the “extremophiles” in low earth orbit or Antarctica. Easily 99% of the humans alive today rely upon the accommodations of farmed food, shelter and clothing, plus things like corrective lenses, hearing aids, wheels, and health-maintaining pharmaceuticals.

There’s a reason why we have different connotations for the words “nude” and “naked”. A human is only nude when they feel safe and protected from the world. But a naked human hominid, stripped of its clothing and other tools, is fairly defenceless, and not easily a successful organism in most environments.

One of the benefits to being able to modify environments according to needs is that humans are able to create so many more niches. We can create different personal environments by using different materials to perform different jobs. We can compensate for different abilities in ways that other animals cannot, and thus succeed individually. Our ability to make long-term tools and create micro-environments for ourselves allows us to be successful to live out our natural lifespans, to rear children and care for each other at different life stages.

Given that humans must compensate for so many natural disabilities, it’s surprising that we will go out of our way to create additional disabilities for ourselves, those handicaps that are created by the social environments. The idea that people should be “independent” and not need things to enable us to function is wholly absurd. We all need other people and things to learn and to function; it’s the specifics that sometimes differ. These are artificial barriers to successful living, not natural barriers.

The human being as a species is simultaneously the most disabled and yet the most successful organism on the planet. We need to remember that, especially when we seek to pretend that disabled people are not “normal” people. Specific disabilities may not be average, but being disabled is inherently normal. You can’t get much more inherently disabled than being a naked ape outside of “Eden”.

Where-ever You Please

I teach community-education classes on gardening. Unlike typical college credit classes where the instructor can generally assume some base level of knowledge and even some demographic homogeneity, these attendees are a real mixed group.

I get complete novices, and seasoned gardeners who just want to pick up some new ideas. I get dysgraphic students who are relieved to see extensive handouts. I get enthused teenagers and first time home-owners, and old people who haven’t gardened since they were children helping feed the family during times of economic scarcity. I get students in wheelchairs who are glad to see tables instead of combined desk-chair units. I get students who have not finished high school and need science concepts explained, and students who have advanced degrees in other fields and want to know how the basic science gets applied in the practical side of horticulture. I get dyslexic students who request being able to audio-record the lecture or get a printout of the powerpoint pictures. I get students who have lived in the area for years, and others who have just moved from a completely different part of the continent and are unfamiliar with the climate and local flora. I get students who are shadowed by sign-language interpreters for whom I fetch seating and make sure that the lighting is set to illuminate them. In other words, I get ordinary students who are a sample group that reflects the population at large. (Well, a horticulturally-interested subset of that population at large.)

I get adults who will come in and meekly ask where they are “supposed to” sit. Oft times these are older adults, who I am assuming are defaulting to some childhood paradigm of Being The Good Student. It’s interesting to see if they find being told, “You may sit where-ever you want!” to be a liberating or momentarily disconcerting. (The side-to-side ranks of tables do not easily lend themselves to a someone who is mentally defaulting to traditional school desks lined up in front-to-back rows.)

I like to set out the handouts on the tables before class starts. This helps prevent me from forgetting some of the parts, and also helps prevent that confused flurry that results from handing out stacks of paper to the people at front and letting each person in the crowd try to figure out how things should be passed back. (The students in my classes never sit together in a solid cluster, so the paper-passing is not the simple conveyer-belt effect one might expect to see.)

Having the handouts out ahead of time also serves another utility for me in that it gives me some measure of control over the attendee scatter. Generally I don’t care where people sit, but sometimes I am given large lecture rooms that seat 120 when I only have 10 students. If the students follow the diffusion typical of dining areas and libraries, they would be all over the place, which is a strain on my vocal cords when I am going to be talking for two hours. So when someone comes in and doesn’t sit at a place that already has handouts, I tell them, “You’ll need some handouts. You can sit where-ever you want, but it’s easier if I don’t have to holler to the back of the room, as I don’t have a microphone.” Once in a while I will have someone who feels the need for more personal space and sits a few rows back from the last person. That’s okay with me; we don’t need to be in a huddle.

I also tell my students, “If you need to get up and move around during that class because of a back problem or if you’re just hyperactive, that’s okay. I shouldn’t get to be the only one who’s pacing around!”

I also get distressed students. I get young moms who are desperately hoping they can get through large chunks of the class without having to take a fussy baby or rambunctious toddler out into the hallway. I get doctors and the relatives of patients who have to suddenly depart at a pager call. I get students who arrive nearly half an hour late because they may have ADD and almost forgot that they had a class today, or who may have some level of geographic agnosia and had to ask half a dozen people on campus how to get to the building, hallway, and classroom. I get students who come defensively clutching notepads and multiples of pens because they are worried about having to take notes and then being tested, even though this is an ungraded class without exams. All these students need reassuring that I am not going to be upset at them, and that I am not grading or judging them, but rather that I am here to help them.

Although the individual class topics are about specific kinds of gardens, describing suitable plants and methods for the category is only my proximate goal. My ultimate goal is to answer the specific questions that each student has brought with them. I want my students to feel that they have received whatever it was that they came to my class to get. This is tricky when they are not even consciously aware of what that is! But it is important that they be able to identify their needs, and then to have those addressed. That way they will feel that they have spent the two hours in a satisfying manner, and I will be able to both adjust and keep the focus of my classes on what the students need and want. I am not making my classes to follow what I think they “should” need.

Because I am supposed to take roll, I ask everyone to tell me their name (I run on the theory that no one mispronounces their own name!), and to share with the class what in particular they are needing to know that day. This question gets easier for the students to answer after the first few replies gets people thinking. As the students list topics, I mention if they are already addressed in what I’ve prepared or I will write myself a word or two on the board to jog my ADHD brain and make sure that I answer them in the appropriate context. All the while, I am mentally adjusting my delivery according to this feedback.

This exercise works well on several fronts. It’s a bit of an ice-breaker, and makes people feel more relaxed about asking questions. The newbies are relieved to hear that other people have the same problems and questions they do, and are less reluctant to speak up. Sometimes the students already know what they want to do and just want someone to affirm that Yes, it’s your yard, and it’s okay to rip up a shrub you don’t like! This exercise is also especially good for those subdued Good Students who are not used to being “allowed” to have their own opinions about what they want or need to learn, and then advocating to have those needs met.

My job description is officially about teaching horticulture, yet in that there is a surprising amount of passing-along of acceptance and self-advocacy.

Centenary Retrospective

“This process of the good life is not, I am convinced, a life for the faint-hearted. It involves the stretching and growing of becoming more and more of one’s potentialities. It involves the courage to be. It means launching oneself fully into the stream of life.”
~ Carl Rogers

Wow. The other day I was looking at my blog stats, and it said that I had 22,000 hits. I have also recently written my 100th post since June; that’s close to thrice a week, for the mathematically disinclined. So I thought I would take a step back and review what has gone by, to see what kinds of topical trends emerge, and pull up some of what I think are the better posts, for those of you who are newer visitors.

Bloggers are usually loquacious and opinionated, a description I do not fail to meet. But why do I blog? Some bloggers just natter about their lives, others blog as an outlet for kvetching, some are pushing a specific agenda, and still others like to analyse what they see. I do a little of all the above, but mostly I like to analyse. I am less concerned about persuading you than I am about giving you something to think about. After all, if we all believed the same things, the dialogues would get pretty dull!

Now that there is data from which to draw a pattern, what kinds of things do I blog about? In a way it is hard to sort posts into single categories, because topically there is an n-dimensional hypervolume of intersecting sets. But as an approach, I like to explore themes from personal experience or news events, and also from philosophical perspectives. I feel that philosophy loses some of its significance without grounding it in the phenomenal fields of people’s lives. And telling stories of lives without examining the what and wherefore of those events falls short of the ultimate value of storytelling: revealing the patterns in human relations, and learning from them.

Some of the greater categories revolve around education, from both student and instructor perspectives, and they revolve around the politics of disability and advocacy. In contrast, there are some themes that connect those categories. One of the most important themes is taking the traditional understandings of how social systems work, and taking those apart to reveal very different perspectives on what is happening.

These systems include how we communicate, such as when the language of “choice” is really just a distractor, or doublespeak meant to transfer the apparent (symbolic) power to the one person who in actuality has little power over the situation. These systems also include power paradigms, including how we “help” people, how people miss the mark when trying to create “inclusiveness”, and why pity is such a evil force because it creates distance between people. (There is no need to congratulate me for having “bravely overcome” the insults and artificial obstacles that people put in my way.)

I also look at how the assumptions we make determine how we define groups of people, from the way that we create diagnostic labels, to the sometimes-absurdities of “person-first language”, and concepts of “tolerance”.

In the end, we don’t need better ways of “beating” the system, because we are all part of the system, and the beatings must stop. (They haven’t improved morale yet.) What we need are ways of overhauling the system by sidestepping these terrible games and introducing different ways of working together.

Our perceptions of the world influence how we act, including how we view and understand others. Sometimes people mistake better identification or newer kinds of identification with “epidemics” of autism, AD/HD et cetera. But I bet if we’d had these kinds of identifiers decades ago, a lot more of us would have been better understood. Hyperactive kids are kind of hard to miss, even those who otherwise do not misbehave. (You wouldn’t believe how many ways there are to sit inappropriately!) More boys than girls are diagnosed, but I have to wonder if that isn’t due more to diagnostic criteria than actual prevalence rate. Why didn’t we see kids with these kinds of “needs” in previous decades? Partly because some of those kids didn’t even go to regular schools — they were kept at home or in institutions. Those who did go to regular schools just had to struggle along. They rarely had IEPs and such because their parents didn’t – couldn’t – ask for services that simply did not exist.

When we make these changes in understanding systems and in our perceptions, they can be outwardly expressed by seeking to become a better advocates. Being able to create a new rôle for one’s self includes being able to learn about the various rôles that others have played. (But just try to find sources on disability studies at the local bookstore!) Advocacy requires overcoming inertia and moving into commitment, and moving into commitment and inclusiveness. We also have to be able to recognise our own sources of ability and power, especially if we’ve been convinced otherwise.

Advocacy is complex, and the concerns of parents for the futures of their disabled children is an important part of that. Unfortunately, people whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality.

It’s hardly not a new trend. But this millennia-old attitude does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights. In light of the fact that many things have a genetic basis, then hating disabilities in our children involves a curious kind of denial and self-loathing.

Distraught parents also need to understand that there is a difference between getting cured and being healed. The unresolved grief leaves parents susceptible to errors of judgment, and these well-intended but scientifically ignorant people who buy into these things are being duped by charlatans, sometimes with loss of life as well as with great monetary expense. Then the problem is propagated because those well-intended but scientifically ignorant people become meme agents, earnestly spreading the false gospel. Meanwhile, the rest of us are left to weed out the “Astroturf” of faux grass-roots efforts.

Advocacy efforts include those in our schools, and involve administrators, educators, parents, and the students themselves. Sometimes teachers and parents worry about school accommodations because they fear it will leave the students unready for when they have to venture into the “real world”. Or, by misunderstanding the differences between equity, equality and need, teachers fear that giving accommodations “wouldn’t be fair” to the other students.

Parenting our students with learning difficulties is not easy – the traditional methods do not work, which is often why the students end up in “special” education. In turn, the students also get frustrated, and attempts to deal with the unmotivated student can sometimes create further problems. We also have to be careful to distinguish between challenging our students, and just making things more difficult for them. Distinguishing between cause and effect in misbehaviour is important – we need to address the causes to resolve problems.

The teaching end of things can also be rife with issues, and college professors can sometimes fall prey to pedagogical myths. Equally absurd is how learning difficulties are often not recognized until the student has been failing or near-failing for a while, thus allowing the student to get further behind and more entrenched in negative mind-sets. On the flip side, we identify exceptionality by contrasting it to what’s common for the group, or by how well a person functions. But what if our sampling group is far from average, or if the environment is less disabling?

Tutoring and teaching is another means of engaging in advocacy, and one of the best means I have is to share with my students the tools for how they can solve new kinds of problems in the future, for themselves and by themselves. It also gives me the opportunity to constantly learn from my students. During this co-educational process, we often need to figure out where in the learning process they are getting stuck, then come up with different ways of helping them learn new information, and different methods for studying. Sometimes the educational changes we make can be as simple as the way a test is typed up, making it more accessible to all the students. The way the audio-visual equipment is set up also makes a significant difference, including the kinds of computer monitors and lighting used. As a tool for engaging your students’ attention, novelty can be a big help. It can also backfire in unexpected ways…

On the more personal scale, I’m always seeking better ways of dealing with my own challenges of “Executive Functioning”, like dealing with all the stuff, stuff, stuff that piles up, losing something in the Dreaded Safe Place, coping with the inertia of task paralysis, or just getting “stuck” when the Plan B falls apart or I unexpectedly get engrossed in something. In worse cases, this means pulling myself out of an awful case of the Betweens, which condition you won’t find listed in any manual, but one that any ADD or autistic person will surely recognise. Regardless, it still helps to remember that strategies for compensating are just that – and that when there’s too much load on the system, those strategies won’t all succeed. That makes it difficult for me, but sometimes others’ lack of understanding is the greater problem.

When I sat and contemplated my place in the grand scheme of things, I found myself wondering just how it was that I could be “doing things the wrong way” and yet still be producing the right results. Were the processes really as important as the results? Doing things “normally” is very important to the general public. People with a wide variety of differences go to extreme effort trying to “pass for normal”, but this can be perilous. Some parents spend great effort to ensure their autistic children learn how to do “good eye contact”, but this may be a poor goal for some unexpected reasons. People can get hung up on developmental timetables, or they worry and wonder why their child likes to spend lots of time lining things up (it’s a good thing, really).

Adults can come up with some pretty off-the-wall assumptions about what is, or is not, going on in a child’s head; we cannot always assign mental processes to the results we see. Then there’s the situations that an earnest-yet-clueless ADHD or Aspie kid can find themselves in, such as failing to cheat. The really scary part is how these children who have difficulties socialising with their peers will fall prey to bullying and abuse, and general depression. Then we grow up into adults, and there’s the whole sticky territory of trying to make Small Talk, and the repercussions of just having a different sense of humor.

On the lighter end, a few posts are just for fun; about once a month there’s a “Recess”. Recess means we take a break and play – it’s important to do that once in a while. During dinner our family discusses why “resistance is fruitile, and how to be “underly pedantic”. Meanwhile, I have fun with repeating words, and enjoy taking photographs of improbable things.

My thanks to you for stopping by, and please to leave comments!

andrea

Running With the Red Queen

Everyone in life has to compensate in some manner or another, because no one excels at everything. If you are not mechanically inclined, you take your car to a shop to get the oil changed, and you call a plumber to fix leaks or replace worn faucets. If you’re not comfortable with arithmetic calculations, you have a a tax specialist do your annual return, and you arrange for automatic payroll deposits and bill payments with your bank. These are ways that ordinary people deal with ordinary difficulties, and no one thinks any less of them. In fact, the economy depends upon people’s interdependency — earning your living doing things for others is important to the Gross National Product, is important to a town’s sense of community, and is important to a person’s self-worth from feeling useful.

It is curious that people who have others do everyday things for them because they are rich are envied, whereas people who have others do everyday things for them because they are unable to do them are looked down upon. People with ability sets that are different than the “average” person’s run into problems because they are being “inappropriately incompetant”. Some of those “should be able to” things are related to sex-rôle stereotypes: a man should be able to fix a leaky faucet, a woman should be able to sew her own shirts. Among more traditional or conservative populations, a person is not faulted if they are incompetant at a skill that is reserved for the other gender. However, when someone cannot do something that is expected of everyone, or cannot do it well, or cannot do it consistently, they are then open to derision.

The Austrian psychologist Alfred Adler noted how people compensated and even over-compensated as ways of dealing with perceived incompentancies and avoiding feelings of inferiority. Not all “incompentancies” really are gross difficulties — they may merely be assigned as such by others around us.

I’ve mentioned before that my life is a mass of compensatory strategies. I compensate for auditory processing problems, and the tinnitus that increases the background noise problem. I compensate for prosopagnosia (difficulties recognising people from their faces). I compensate for all those organisational, time-sense, and executive-functioning issues related to ADHD and Asperger’s (planning, executing tasks including the getting-past-the-inertia stages, self-monitoring). I compensate for the hyperacusis, and my general clumsiness, tics and stuttering, and migraines. Generally speaking I compensate fairly well. So much so that most people don’t realise that I am working much harder to achieve nearly as well. I “pass for normal” most days, so people can’t understand why I’m having problems when I’m ill or stressed or simply trying to compensate for too many things simultaneously.

Adler would probably say that I over-compensate.

I had to go through Driver’s Education class twice to acquire the necessary motor skills. I did eventually learn to drive stick shift (manual transmission) and have even driven in both the UK and US. The day that I parallel-parked in front of my high school to request a transcript to be sent to a college was indeed a threshold moment in my life. (Even the transcript part was a highlight, as assaying higher education was uncertain due to my previous academic difficulties.) My husband once asked me, “What, can’t you drive and talk at the same time?” and I did not feel that it was unreasonable to answer, “No, I can’t.” I cannot drive a stick shift vehicle through city traffic, trying to find a business I had never been to, and talk on a cell phone. (I have Auditory Processing Disorder and he has a severe hearing loss — talking on the phone can be inherently confusing in its own right.)

There are classes when I struggle to keep my attention focused on the instructor, and also to understand what they are saying, especially if the classroom is mechanically noisy, or if the instructor mumbles or talks while facing the whiteboard or doesn’t present information in a clearly-defined format or use supplementary visuals. Because I am very good at being able to distinguish the important material in an educational presentation and record those details in sensible paragraphs, I have been a note-taker for dysgraphic or hearing-impaired students. But I have only been able to do that in those subjects where I was already familiar with most of the information — I could not be a note-taker for others if I was still learning all the vocabulary and concepts myself.

Mathematics presents special difficulties for me because of problems with sequencing, slow working speed, and occasional transpositions. It took me four years to memorise my multiplication tables, and I have flunked a number of tests over the years, and nearly had to take a class over. In university I dropped a course that I was getting D or F grades, to try it again later on to get C, B or A grades, and did that with more than one course. It was slow, difficult work slogging through college algebra, trigonometry, calculus, statistics, physics, and four semesters of chemistry. One of my current jobs is working as a special education paraprofessional. I help in the science classroom, but my main assignment is in the math classroom. The extremely ironic thing is that not only am I helping students with mathematics, but also that I am doing so in the very same school I attended years ago, in the same classrooms where I had once sat flunking math tests. (My first work week was not only difficult from the prosopagnosia-aggravated new-job disorientation, but also from “post-traumatic school disorder” as I had ongoing flashbacks.)

I actually did flunk a semester of secondary English and had to re-take that portion of the course. I have also written a book and hundreds of articles (on a variety of subjects) for magazines and newspapers. I tutor college students in composition classes.

Given these examples, it might sound as though my difficulties were all in the past, and have been made up for by my recent successes. That isn’t quite true. What I have done is learned how to work around some kinds of difficulties. With others I simply have to work harder to puzzle through consciously to figure out those things that most people do easily and without conscious effort. Some days I feel like Alice Through the Looking Glass, running as fast as I can just to stay in place.

The problem with over-compensation is that although I have at times felt that I had vanquished my personal demons of incompetancy by having overcome various failures with landmark achievements, those successes do not mean that I cannot or will not have future problems! What helped more than those moments of personal glory (exhilerating though they were, despite lacking exciting soundtrack music), has been finding out why I have problems, how those problems manifest in my daily life, and how to work with them. Self-understanding improves self-image because it gives me tools for those ongoing and future difficulties. Self-understanding means that the next time I fail something (not “if” but “when”, because everyone does fail periodically), I will have the necessary cognitive and emotional tools to handle the disappointment. I will be able to handle defeat graciously, because it is a failure of task-specific achievement, not moral failure. Furthermore, I can extend that same grace to others, because we all have such problems, even though the details differ.

Out in our various communities, we need to be able to not only acknowledge that Yes, not everyone can do the same thing, but also destigmatise that fact. One of the tragedies with the current paradigms in the helping professions is the disdain and depersonalisation from “care-givers” to that people who need personal attendant services or other forms of assistance. We can’t all do the same things. Needing someone to change your diaper should be no more stigmatising than needing someone to change the oil in your car. There’s really something sick about people who feel superior those whom they serve — there’s an element of self-loathing transferred from one’s self to one’s job to the client. It is overcompensation of the soul-eating malicious sort. Service to others is about sharing strengths, not about bolstering one’s damaged self-worth at the expense of others’.

We should not have to overwork ourselves to over-compensate just to earn other’s acceptance.

Getting Over the Cure

You love people for who they are, not for who you want them to be.

Stick that in the back of your mind for a minute. Let’s move sideways to look at some other quotes. These are from Paula Kamen’s lovely book, All in my head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening HEADACHE. One important thought is:

“There is a difference between getting cured and getting healed.”

Another is:

“Acceptance is not the same thing as resignation.”

These are very potent concepts, the sort that are easily-understood on the surface verbal level, but take longer to fully integrate through all the layers of one’s consciousness.

“Getting cured” means being rid of a medical or psychological problem to become healthy. In contrast, “getting healed” does not mean that one needs to be rid of the medical or psychological problem in order to move from merely surviving to living life fairly happily.

One can accept disability without being resigned to the concept that life is ruined because it will never be the way that was anticipated. Instead, one accepts that life will be different, and that this is okay.

When parents learn that their child has some kind of disability, they go through a sort of grieving process. They mourn the child they didn’t get or will no longer have. (In response, Jim Sinclair’s essay, “Don’t Mourn For Us” is a thought-provoking and reassuring essay for parents of autistic children.) Not everyone grieves in the same way, and not every parent experiences a lot of grief — sometimes there is more relief for having “figured things out” and being able to name, understand, and thus work with the difficulties or differences.

Sometimes parents get “stuck” in the blame and bargaining stages of grieving. They have not accepted the disability, and their child is not okay as a disabled person. In the denial is the core myth that somehow out there is a cure, and once they can fix the problem, then everything in their lives will be okay. The parents dwell upon the past and perceived injustices, and nothing less than total “cure” is acceptable. Sadly, this means that until the parent can announce the child is cured, then the child is not fully acceptable and loved as a full human being. This is devastating to the social, spiritual, and even physical development of the child.

In families that already dysfunctional from other issues, the disabled or different child can serve as a distracter from the real personal and interpersonal issues, and may get stuck in the rôle of the scapegoat: “things would be okay if it weren’t for this tragedy”.

When I say that, “You love people for who they are, not for who you want them to be,” that does not mean that one allows bad behaviour, or does not try to help a person with therapeutic or educational approaches that enable a person to achieve as much as possible. Rather, it means that you love the person for who and what they are, and that love is not conditional upon the person pretending to be something they are not.

Devils and Angels

Reading the morning news is dreadful for the happy digestion of my breakfast. Everywhere I look there are devils and angels, pantheons and freak shows, all in the name of disability.

It’s hardly not a new trend. But this millennia-old attitude does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights.

Being disabled is seen as a condition so horrid that no one could imagine living a happy, (otherwise) healthy, productive life. Not despite the disability, and not especially with the disability or even because of the disability. Being disabled is a fate worse than death. It turns a person into a “toxic train wreck” or it’s “worse than cancer” (because a person with autism, unlike a person with cancer, has a normal lifespan). So horribly unimaginable is being disabled that euthanasia is often deemed acceptable and even an appropriate “solution” to disability.

It has been not very long since people with various disabilities (and other differences) were routinely institutionalized (unfit for being in human society), and often sterilized. A person could be subjected to forcible surgery for such eugenic reasons as being blind, deaf, epileptic, poor, of a native (aboriginal) race, of mixed races, alcoholic, having a physical deformity, cognitive disability or perceived mental illness. Had I been institutionalized as a teenager, my children might not exist.

Being disabled is also seen as a condition where a family is divinely blessed to have been given such a special child who is looked after by angels. I’m not slamming those parents who feel that their children are blessings, but rather saying that all children are such – having a disabled child in the family does not earn a person extra cosmic “brownie points”.

The angelic disabled person is not-quite-human, a tragic but romanticized virgin on a pedestal of virtue. Certainly not an everyday sexual adult; a female person should never do anything as inconvenient as menstruate. Like 19th-century women, the disabled are sometimes cast as cherubic, above the base animal instincts of men, and held in divine favor. In medieval times, the town’s fools were excepted from normal citizenship, either as unclean or sometimes soothsayers, if given to (epileptic or other) fits.

In current news there is the case of the “Ashley Treatment” where a young disabled girl’s parents have elected to have her undergo several surgical treatments plus œstrogen therapy to keep their “pillow angel” a small, manageable size and to remove her breast buds and uterus to prevent her natural sexual development. Removing breast-buds to prevent cancer is a specious argument. I don’t know if the history of cancer is from the maternal and/or paternal side(s) of the family, but it’s pretty telling that we don’t hear of mom and/or dad also having mastectomies to prevent cancer. After all, cancer is more commonly found in older people. Likewise it’s another specious argument that making her infertile will prevent the potential for sexual abuse from caregivers – children are just as easily targets of molestation (it simply makes any abuse more difficult to discover because she won’t unexpectedly come up pregnant). Were she male, would the child have similar surgeries?

At that rate, one could simply hobble a child so they never ran away. Or one could mute a child so they wouldn’t scream loudly when upset. Or one could remove all of a child’s teeth so they couldn’t bite anyone when scared – oh wait, people have already done that …

I have to sympathiese with her parents; caring for someone on a daily basis is difficult. But trying to prevent sexual abuse or care difficulties by surgically removing body parts is working at the wrong end of a major social problem. It’s completely backwards! The problem is not that disabled people exist, but rather that there are not suitable social support networks for disabled people and their family members.

Many handicaps are socially created — it’s not the person who has the problem, it’s the way society is set up.

No longer is the disabled person a sick lurid spectacle to be hidden away. They are once again on parade, the freak show turned into infobites. An insidious side effect of freakifying the disabled as devils and angels is that it not only creates the disabled as Other, but it also does a great disservice to those who view themselves as nondisabled: it makes a person glad to be normal, and content to be average. It perpetuates the divisions and reinforces the dualities. With such positions, we can never create inclusivity.

What could be worse than being cast as devil or angel? Being totally discounted as a non-person. Being neglected and dying a slow, painful death like Sarah Crider or Tiffany Pinckney.

The human race has a lot to answer for.

Plaint of the Aspie

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

 

Are not my tears and blood salt of this earth?

 

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

 

We are deemed aliens, and yet your brethren.

 

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

Where’s My Shelf?

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

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

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

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

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

You want to hear some interesting numbers?

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

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

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

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

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

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

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

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