I need to write a letter to my boss*

[* THIS POST IS A PART OF BLOGGING AGAINST DISABLISM DAY 2010]

Or perhaps, just deliver an explanatory document to my boss and the HR (Human Resources) person at my second job.

My annual review was okay; very good on some things, okay on others, some recommendations (there always are — no one is perfect after all).  But something mentioned was to get to know the regular customers by name.  I have, after all, been here a year, and grocery stores have a core set of regular customers that come through once, if not several times, a week.  It’s not hard to learn names when you’re checking them out, as the names appear on their check or on the register (till) screen when they use a debit or credit card.

But of course, most people have no difficulty distinguishing or remembering faces.

I on the other hand, have that lovely invisible disability of prosopagnosia, or face-blindness.  I don’t recognize people by their faces.  I cannot easily or quickly identify people.  And, I cannot remember faces.  Sure, I’ve learned to (consciously, relatively slowly) identify a core set of the people with whom I work regularly.  I know my immediate bosses, the store manager, some of the other managers, and several of the checkers and sackers, a few stockers, and one each of several butchers, florists, pharmacists, and cooks.

But they are likely less than 25% of the total employees.  I’m not sure how many there really are, because part-timers tend to come and go, and also, to me the other employees form a general mass of generic persons, all of whom follow the same prescribed dress code.

Ah yes, the dress code.  The great thing about jobs I have is that the school and the grocery both require people to wear name tags.  Not only can I be sure with whom I’m speaking, but they also allow me to check and memorize the names once I have figured out how to identify that person regularly.  Whee!

But, unlike the school, the grocery has a dress code.  It’s not overly fastidious, just along the lines of slacks + collared shirt, except when we are to wear a specific color of shirt on Fridays & weekends.  Of course, there’s a down side — when I need to find say, my assistant manager to ask him a question, there’s an entire giant supermarket just riddled with people in blue button-down or polo [golf, tennis] shirts — and some of those are customers!

I cannot just glance over a crowd of people and instantly spot the person I need.  They don’t “pop out”.  (No, not even my family members!)  Instead, I must examine each person and compare their overall size, haircut, gender, and coloration to my mental gestalt.  Of course, it’s easier if I’m looking for say, a taller, brown person — that means I only have to scan each aisle for (1) blue shirts, (2) tall people, (3) brown-skinned people, and (4) the particular haircut, gait and voice that is one of the assistant managers.

That sounds fairly easy, or at least efficient, right?  But that’s still walking down some 15+ aisles and side-aisles, visually sorting each adult-size person.  And quite possibly the guy’s in the back scanning office or stock room or upstairs office or break room or in a restroom or retrieving something from the outside loading dock or where-ever-the-hell managers go when they go poof and disappear.

Thank heavens I can get on the intercom and page him to call extension 137 or whatever.  In turn, when I’m needed to be an extra checker or to meet with someone, the various managers have been very nice about paging me by my name-and-department or by my whole name.  I’ve not really bothered to explain the whole Auditory Processing Disorder thing; I’ve just said that it’s hard for me to understand the pages sometimes, especially if my head’s down in a refrigerated case  with its noisy fans, or I’m in the back room pulling stuff out of shipping cartons.

But you know, it’s difficult to explain faceblindness in 25-words-or-less.  No one’s heard of it, and the fact that I can in some manner still identify some people enough of the time makes it even more baffling to people.  And of course, there’s the old, “Oh, I have trouble remembering names and faces sometimes, too.”

Well, yeah.  But you still recognize people, in a split-second of unconscious thought.  You are aware that you know these people.  You may even know where you know all those people from. You just have trouble remembering the names that go with those faces.

I never do.  And except for the couple-dozen very morphologically distinctive customers, I’m not likely to remember any of them.

Silly people, they keep changing their physical characteristics, wearing different clothes through the seasons, changing their hairstyles, their purses, their hats or glasses, and so on.  Sometimes they have family members with them, and sometimes not.  Their children have this incredible ability to grow and morph dramatically.  And of course, the customers keep changing the details of how they interact with me, and will need my help finding something in one aisle or another, or check out at different times of day, or whatever.  Good heavens, sometimes people whom I know from other parts of my life will come through — the pharmacist will be shopping in their street clothes instead of standing behind their counter in a lab coat, my neighbor, or a former student will greet me, and they usually expect me to know them when they are out of their usual environments.  (At least my ophthalmologist understands that I’ve hardly ever seen him with my glasses on.)

Alas, the world is too full of generic people seen on an intermittent basis.  Once in a great while, somebody comes by to ask me a question, and it isn’t until they begin to speak to me that everything clicks, and I realize this is my daughter or son-in-law!

I’m really quite helpful to customers, am conscientious about getting the stock rotated and shelved with the right price tag, do a great job of setting up displays, make a point to be sure that the back stock is checked so it gets on the floor, am careful when bagging so the cold items are together and the eggs are all okay and the bread and produce doesn’t get squished, and so on.

It’s just that I will never be able to learn very many customers, or even all the employees.  And much as I would like to have this magical skill that 98% of the rest of the population has, my disability is far outweighed by all the other things that I can do well.  I’m not lazy or stupid.  It’s just that I have an invisible disability.

Re-tailored

Golly, it’s been some time since I’ve written a post. It’s not for a lack of thoughts, but rather energy.  My sleep has been disturbed by nightmares for, well, months, and the cumulative effect wears me down in the evenings.

This I had posted over years back.  As the saying describes, Friends come and go, but enemies hang around. I thought I had laid to rest some of those old demons, and perhaps I had, but now they reappear, previous horrors conflated with the memories of new experiences.

TAILOR-MADE

Tailor-made, I was.
Though all my clothes hung on me
And I was awkward as hell
Shoelaces usually tripped undone
And my hair ties came loose.

Tailor-made for being the victim
Geeky, younger, smaller, four-eyed,
Clumsy, studious, totally clueless
Socially awkward, unpopular
And best of all, face-blind.

I never knew who it was that poked me with pins
Stole my purse, squashed my lunch
Took my street clothes while in gym
Groped barely-developing breasts
Slammed me against the lockers.

Smeared clay on my chair like shit
Marked on my books, tore my assignments
Called me names, oh so many names
Or briefly pretended to befriend me
To make me the butt of a joke.

Not that I didn’t protest repeatedly
I reported the abuses properly
Told many official, protective people
Friends, family, teachers, administrators
But their responses were unilateral

“Boys will be boys,” said dad.
“You’re just being whiney,” said mom.
“If you can’t tell us who these people are,
that you ‘think’ are doing things to you,
then we can’t do anything,” said the officials.

Perhaps the real problem
Was not in what I said,
But that I was speaking up.
When I asserted myself
They redefined my reality.

Saying that what I perceived did not exist
That I was crazy, hallucinating, or on drugs
That I was just trying to attract attention
That I was making things up
When I wasn’t.

The perfect victim is someone
Who can’t identify the people that did things
Who tries to be good and please people
Who misses danger cues
Who is easy to silence.

The anger and frustration at being disbelieved
Turns into confusion and self-doubt
Maybe it’s just me
I must be wrong
Everyone says so.

Depression sinks in
I must be crazy
I keep perceiving this as reality
When everyone says it isn’t so
Isn’t that the logical conclusion?

You must trust people to help you
They are important people
They are the ones in charge
They know what’s best for you
They keep asserting you’re wrong.

When the reality is given to you by others
And they keep changing the story
It’s hard to keep your facts straight.
This is of course is only further proof
That you are crazy, and making things up.

Trust is earned, not demanded.
Funny how trust erodes
When reality is allowed to reassert itself
And I re-assert myself
Even though they re-assert:

I’m just acting out and making up stories.


The Catch

I’ve been having intermittent bouts of vertigo (some severe), along with worsening tinnitus and resulting difficulty understanding what people are saying. My GP said I got poor results on the tympanogram, and is sending me to an ENT, whom I see next week.  I’m no longer driving on the highway, and take extra care if I’m carrying my grandson.

Meanwhile, someone at school told the principal that I was “doing the wall thing”, meaning touching the wall to steady myself as I passed down a hallway.  This resulted in being called up for a Official Meeting.  By the time I left, I was feeling queasy and light-headed for entirely different reasons:

  • Being a couple hours late to phone in my absences due to migraine and due to a Emergency Room visit for vertigo, had previously earned me a stern warning for procedural lapses.
  • Going to or staying at work if feeling dizzy is prohibited because an educator with vertigo is a liability.
  • Leaving work 30 minutes early for a doctor’s appointment must be taken as sick time.
  • No “flex time” is allowed for appointments (i.e. leaving a bit early and making up that time by staying later another day).
  • Thirty minutes, half a day or a whole day all count equally as an incident of using a sick day.
  • Taking 19 sick-day events by October due to viruses, migraines, vertigo or doctor appointments is excessive, and any further such absences can result in termination of employment.
  • Which specific number is unmentioned, but up to the Powers That Be in the Human Resources department.
  • Any employee who is feverish with a virus must stay home.

Alas, this is all legal, and there seems to be a large limbo of being disabled by irregularly re-occuring conditions without actually being Disabled enough for some kind of accommodation.

Even if I somehow negotiated with H.R., the interpersonal climate with the school admin is too prickly to stay.  This is a shame, because I have a great relationship with my classroom staff/faculty.

I’m looking for a different job, hopefully something full-time that also pays well enough so I can have just ONE job in my life.  But everything I’ve seen pays fast-food wages, or else is so technically specific that my skills profile is a mis-match.

The free-floating anxiety is just HELL.

Cartfuls of Spoons

They’re out.  Or, Out.  We have the exquisite “Privilege of Being Clouted By Cabbage” and are navigating the hazards of the supermarket.  When things are done the way they’re supposed to be, going to pick up a few groceries is just as boring, or as Dave discovered, lonely, for disabled people as much as it is for everyone else.  But sometimes it isn’t, such as when Wheelchair Dancer finds herself navigating the hazards of anonymous donors that leave awkward brochures under her windshield wiper, and then dealing with the even more awkward social fallout with the clerk who’s assisting her.

People with a variety of disabilities come to the store to get groceries, movies, dry cleaning, take-out food, postage stamps, floral arrangements, and because it’s this time of year, garden plants, which is why I am working there.  I shouldn’t be surprised, but I am bemused to report that I realised that people with physical ailments are shopping at the store alla time!  After all, that is why we have some of those electric carts, in addition to automatic doors, ramped paving, lower check-writing stands, supposedly-accessible bathrooms*, et cetera.

Most of the time I just interact with the public as a “normal” garden center employee, but sometimes we are also interacting with that subtle overlay of disability, which entertains the social scientist part of my brain.

Being the token horticulturalist, I answer questions, help customers plan flower beds and suggest suitable plants for locations.  In addition to working the register, watering, deadheading and “facing” the stock (moving pots towards the fronts of the benches to fill in holes left by customers), I work with the others to come up with æsthetically-pleasing displays of the plants.  (Although there is no way of hiding the fact that the corporate HQ plagued us with a plethora of Pelargonium, a visual red tide of geraniums.)

I’ve seen plenty of plant displays at a variety of other stores, and have found their long lines of benches to be annoying.  It’s not just that endless tracts of pink & purple Petunias, orange & yellow Marigolds, and red Geraniums are mind-numbingly dull to the point of dampening any sort of inspiration for coming up with container or bedding combinations.  It’s that the long lines of “benches” block traffic flow.  You feel like you’re trudging up and down the maze of a ticket queue, unable to grab some pots of more-interesting Corkscrew Rush or Calibrachoa tha are hidden over there two aisles over.  It’s hard to break out of the march to exit stage left to the register (till), or even quit to go over to the entrance into the store.  The long lines of benches are especially boring for children, who have little more than a view of the edges of the benches and the pots, with little respite in sight.  (I’ve taken to offering children cups of the cold water from our water cooler barrel, as hot, thirsty children are cranky children.)

Worst, when at these other stores run out of available bench space, a lot of the pallets of potted plants just end up dropped by the pallet jack where-ever there’s room on the ground.  This means that the aisles are not really planned, so sometimes there are narrow dead-ends, or aisles blocked by broken bags of mulch, or the plants are simply hard to reach because they are way down on the ground or are way deep in the center of the pallet.  They are not accessible.

For a few days, we too of a dozen pallets lined up at the edge of our lot, albeit with sufficient aisle space.  It really “made my brain hurt”, because the plants had been shipped all higgedy-piggedy, with shrubs, grasses, annuals and perennials all mixed together.  There were Daylilies in four different places around our lot!  The flats of shade-loving Wax Begonias and Impatiens and sun-loving Verbena and Vinca were all jumbled by species and color!  (And OMG, still more Geraniums.  And Creeping Phlox, which only looks nice when it’s blooming, and now we have enough to landscape a highway interchange.)

But thankfully, I’m not the only one who has a strong interest in making the endless flats of plants look more interesting, and be more accessible. We’ve been stacking pallets or propping them up on cinderblocks to put the plants into easier view and reach.  (Plus, they’re also easier for us to clean and water — ergonomics, w00t!)  We’ve been making sure that the aisles are frequently broken up into side-paths, and we try to keep the aisles 3-4 feet wide so carts, strollers and wheelchairs can get through.  It seems to be working well; every day we get compliments about how good the plants look.

But what makes this place pleasant to work for is the concern for helping our customers.  Sure, it’s store policy to be helpful (doesn’t every business flog that slogan?), but we are glad to break from running the register or watering to carry things out to the car, or load up bags of mulch and rock, or show you where the Verbena is, or explain the differences between the four varieties of white Petunias.  When someone has their hands full, we grab some empty flats, and pull carts (buggies, trolleys) over to make things easier.

It’s this “serve everyone” approach that makes helping people with various disabilities so much easier.  One of the other clerks knows American Sign Language, so Deaf customers are sure to look for her (my ASL is rather limited).  When the gentleman in the power chair thanked a coworker for carrying stuff out to his van, I was tickled to overhear him say, “No problem!  We do that for everyone.”  Because we do.

Sometimes the “disabled community” moments are colored in large brush strokes.  An older man in a wheelchair came by in search of some herb seeds, accompanied by two women who were of the “care-taker” rather than “personal assistant” mentality.  Although neither said anything obviously untoward, there was still a patronizing aura, that his desire to go shopping was being honored but that they were still “humoring” him.  It made me uncomfortable, and I kept trying to scan the interactions in the triad to figure out what was going on.

But the women were intent on asking me questions of their own, even as they were simultaneously going through the motions of helping him.  “Here’s someone who can help you.  He’s looking for some seeds.  Tell her what you’re looking for.  Do you have any seeds?  Do you remember what it was he wanted?  Ooh, don’t you just love those pink flowers?  Isn’t that what you got on your desk?”

“Well I dunno, but it’s not flowering any more.  Was you looking for parsley?  He was wanting to grow some stuff from seed.  You sure gots a lot of plants out here.”

Trying to track all this verbiage flying by was making me dizzy, and I just wanted to focus on finding out what the man came to get.  The customer himself was having some expressive difficulties. (Who wouldn’t have, being around those two all day!)  I knelt down on a knee so I could speak with him face to face.  I had to.  I had to disengage myself from the chatty care-takers who were now trying to ask me random questions unrelated to the needs of my primary customer.  I had to be able to focus on what he was asking for, which meant watching him speak.  And I had to honor him personally as the customer, not as some second-class accessory.

My knees cracked noisily, and I knelt down on one knee, and we conversed, just the garden center clerk and the customer who wanted parsley seeds, and who considered and then decided against the Doubled-Curled or Flat Italian Parsley seedlings.

After that moment, I stood back up and we were sucked back into the vortex of the chatty care-givers, who asked me some confused questions about houseplants, and then led/followed him over to the main store entrance.  I hoped he would be getting the things that he wanted this evening.

Sometimes the community moments come by quietly.  I was checking out a couple flats of annuals and several perennials for a woman, cleaning off some old leaves and blossoms and chatting as the register processed her credit card in its own slow time.

“This is going to take me several days to get it all planted,” she offered.

“Well, that’s always a good thing to do anyway,” I offered, affirming her wisdom.  “It’s those marathon gardening sessions that break our backs.”  The register finally finished hiccoughing through the electronic transmission and spat out her receipt.  I picked up her potted rose bush, rested it on a hip, and then deftly tipped up the flat of annuals to balance them on my other hand.  (It only sounds tricky; in reality the flats are just boxy grates, and I can curl my fingers into them.)  “Here, I’ll carry these out for you,” I said, leaving her to handle her purse and a couple quart pots of perennials, then added,  “I can’t garden for ten hours solid since I got arthritis.”

“Thanks.  I have RA and can only do so much at a time.”

“Ah, yeah,” I commiserated.  “You have to make dinners ahead, because the next day you’re too exhausted from gardening.”  She nodded, already tired from just the idea of the ordeal ahead.  “It’s fun, but you just run out of ‘spoons’!”   And then I loaded things into her car and we swapped the mutual thanks.  My attention turned to the gardening work of my own, left uncompleted or never even started.  Oh, and errands.  Here I was at the market nearly every day, but I kept forgetting to get my arthritis medicationn refilled!

“Hey Andrea,”  piped up one of my coworkers, “it’s nearly time for you to go on break.”  This clerk is a good guy; he’ll remind me when something is coming up, he’ll remind me when it’s time to start, and even after I’ve forgotten it.  He asks me if I remembered to clock in, and reminds me (several times) to copy down the next week’s schedule before leaving.  It sure is wonderful to have garden center clerks who are so helpful, especially when you when you’re having seriously distracted & forgetful AD/HD days!

* I’ve never navigated the women’s restroom in a wheelchair, but there are still the stupid doors to wrangle …

The very model of a social disability

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

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

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

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

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

Smaller than a breadbox

Some Day,

Some day, some blessed day, when we have a departmental staff meeting or a district staff-development event, I hope there is something to eat besides  doughnuts-bagels-pastries-muffins-cinnamon rolls-deli sandwiches-pizza-pretzels-cake-cookies-brownies or pie.  Oh sure, when the school had a holiday luncheon for the staff, the caterer also brought a green salad in addition to the lasagne, spaghetti, breadsticks and cake. But gluten-intolerant woman cannot live on iceberg lettuce and a bottle of flavored water.

If I’m lucky on the days of these communal-noshing events, 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.

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 »

Meet the Zebras

A large, black and white striped butterfly nectaring no a purple coneflower

A large, black and white striped butterfly nectaring on a purple coneflower

In the field of medicine, there’s a saying that, “If you hear hoofbeats, think horses, not zebras.” This means that although medical students will learn of a great many odd diseases, some of them are quite exotic (“zebras”), but that most patients’ complaints will resolve to common causes (“horses”).

Which of course does not mean that one won’t encounter “zebras”.  Once a very great while there will be someone with the rare genetic disorder or unusual psychological glitch.  Mayhap even someone with several rare genetic disorders and unusual psychological glitches!  This insect profile post is dedicated to all you readers out there who are “zebras”.  (Wave to the crowd folks; let them know that “rare” is not synonymous with “you’ll never meet them”.)

Like medical zebras, Zebra Swallowtails (Papilionidae: Eurytides marcellus) are rare amongst butterflies.  They are not endangered, but unlike Monarchs, Cabbage Whites or Painted Ladies, you don’t see these zebras very often.  This is a big butterfly, about 6-9 cm (2.5-3.5″) wide.  They live in the eastern half of North America, and can be found wafting around the borders between fields and woods or streams.  The reason such a large and striking butterfly lives in such obscurity is not for limitations in ecotone; it will live most anywhere but montane and alpine zones. It’s not even limited by breeding season; there are two broods in northern populations, and four broods in southern.

Rather, they are rare because the larvae are monophagous (a fancy word for “only eats one kind of thing” — a parent might lament, “My child is seemingly monophagous upon Goldfish crackers”).  Well, plenty of catepillars out there are picky.  But Zebra Swallowtail ‘pillars will only eat the leaves of pawpaw trees (Asimina triloba) and other species of the genus.  Unlike the ubiquitous callery flowering pear trees or purple barberry shrubs, homeowners and parks managers do not go around planting pawpaws.  Unacommodated by the lack of host plants, the butterflies spend their lives beyond the outskirts of the developed world. Only butterfly enthusiasts and rare fruit fanciers who go around planting pawpaws Just Because, or residents of diversified country wilds will have much hope of seeing zebras.

It’s not that medical or butterfly zebras don’t exist, but that you have to know where to find them.  You also have to be willing to support their particular needs to have the opportunity to get to know them.  But either one of those conditions requires understanding that zebras even exist.  Yes, you might even (gasp!) have one in Your Back Yard!  It’s true.  And now that you have a better search image, I guarantee that you will be much more likely to meet them.

Why this Behavioural Observer isn’t a Behaviourist

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

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

In other words, Read the rest of this entry »

Still Invisible

Bug Girl is citing a new report (pdf download link), “A National Analysis of Minorities in Science and Engineering Faculties at Research Universities”, in which 100 departments representing 15 disciplines of engineering and science (including social science) were surveyed. As we might expect, the results suck. Actually, the results suck even worse than the authors (Dr. Donna Nelson, supervising Christopher N. Brammer and Heather Rhoads) probably realise. But before I get ahead of myself, let me share some of what they had to say. 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 »

How hard can it be?

A few years ago I had the pleasure of providing the annual Inservice training session for a university’s tutoring department. One of the themes I explored in brief was how tutees, especially those with various learning disabilities, may have processing difficulties. We have to take information in, make sense of it, retrieve information, and then be able to relay information back. Various kinds of learning disabilities interfere with steps in this process, and the interference can happen at more than one step, especially when a person has more than one kind of difficulty. (Learning disabilities and other physiological issues are often co-occurring, technically known by the dreadful-sounding term of “comorbid”.)

The upshot of all this is that any “speed-bumps” or “road-blocks” in the processing will result in slow processing (it takes longer to do things), or uneven processing (some days it’s more difficult to do things, not always for apparent reasons), or intermittent or chronic inabilities to do things (being able to do things on some days or in some hours, but not others, can be more frustrating than never being able to do them).

There are a variety of disabilities out there, but instead of describing how each one can affect a person’s ability to respond in educational efforts, I’m going to describe how processing works in general, and at which steps some disabilities become apparent.

Whenever we interact with the world, there is a whole series of steps that has to happen. Let’s take the subject of, “Answering a question asked of you”. Most people assume that this is really simple, and thus, easy. Hah! Read the rest of this entry »

Mitigating measures

“Ms Andrea, please explain to the Court how being homosexual substantially limits one or more major life activities.”

“What?”

“Your case to the Court is a discrimination case, claiming the defendant made homophobic remarks. Please describe to the court how homosexual you are.”

“I … what, no. I never said I’m a lesbian, or bisexual, or even heterosexual. I’ve never made any kind of formal statement about my sexual orientation. This isn’t about whether or not I’m gay. This is about the slurs, threats, and homophobic remarks at school. It’s about sexual harassment.”

“Ms Andrea, do not waste the Court’s time. You cannot make a case for discrimination unless you can prove that you are a member of a group that has been discriminated against. Now please explain to the court how being homosexual substantially limits one or more major life activities.”

This is satire, of the dark sort. I have never really filed a court complaint. My actual time in a court process is limited to paying a minor speeding ticket (lesson learned: cruise control is a good thing).

I have been at that ugly social place (repeatedly so) where complaining about homophobic remarks simply sets one up for further sexual harassment, because everyone assumes that complaining about such means that you are gay, and that because you’re gay you “deserve” whatever abuse happens.

The point to this bit of theatre of the absurd is that a person need not be a particular sort of person to have been harassed or discriminated against. Read the rest of this entry »

An Ingrained Problem

“Oh, CRAP!” I exclaimed most vexedly from the kitchenette of the vacation condo.

Shhh,” hubby chided from the living room where he and the kid had set up the chess board, “we’re playing a very intense game.”

“But I bought the wrong kind of chicken fillets — it has breading junk all over it. I can’t eat it, and I can’t use it in recipes.” I chucked the bag back into the freezer, and checked the other one, finding that it was exactly the same. Damn! I washed the cherries and ate several, feeling even more tired than before. Driving through the Rocky Mountain passes in the rain had been fatiguing, and it would also take me a day to get used to the 9090 feet/ 2770 meter elevation.

The local store hadn’t exactly been a close runner-up to the Whole Foods we’d visited yesterday while in Denver. We’d stopped at that market to buy lunches from their hot and cold food bars, and I’d been flabbergasted to find a whole aisle marked gluten-free. ::swoon::

If you don’t eat wheat (found not only in breads, pasta, pizza, crackers, cookies and cereals, but also an incredible number of processed foods), and you don’t eat red meat (mammals), then it’s really hard to dine out in the US. I try for most anything ethnic vegetarian or chicken & rice (that most flexible of dishes — there’s something in nearly every culture). If stuck in an American burgers/steaks/pasta venue, I invariably default to the salad, hopefully with a little chicken or grilled salmon for protein — that’s not bad, but there’s a limit to how much iceberg lettuce a body can stand.

It was a couple years ago that I started losing weight. While at an Italian restaurant, hubby suddenly piped up with one of his classic silly-old-hard-of-hearing-Dad malapropisms, Read the rest of this entry »

Buying Citizenship

I just got back from an “open house” hosted by my former uni. Happened to get some nice insect photos along the way, which pleased me. But I had an annoying experience talking to a researcher who’d recently been made a full professor. He told me about his students, and how they’d graduated and gone off and gotten jobs. I mentioned that over a year later, I was still looking for a job that reflected my post-graduate degree. What, he asked me, hadn’t I been applying for This job and That job? Yes, I had, I replied. Once again I had that bewildering sense, the vertigo of the psyche, where it seems like everyone else graduates and goes off to get gainful employment.

He couldn’t understand my dilemma. There were jobs out there (obviously, if his graduate students had been getting them). Unstated, but staining the tone of his questions, was the disdain of what was wrong with [me] that I couldn’t get a job? I ended up feeling like an unemployable idiot.

I’m not of course — actually, I have three different jobs. Put them together, and I have something almost like a full-time job. I get excellent employee reviews on my jobs. But it’s still patchwork employment at low pay. Jobs are not a given, under any economic circumstances. Sure his students got jobs — but for every person who does get the job for which they applied, there’s a score or more of other people who didn’t get that job. And despite my academic achievements (completed with great struggle against health issues), in the realm of employment I have “failed” to succeed at the appropriate performance levels expected for someone of my social station. I’m bidding too low in the marketplace for citizenship. Read the rest of this entry »

Waiting For GINA

This is one of those days when it feels like you’ve slid into some cheesy sci-fi flick on the late, late movie channel. I’m waiting for GINA to happen. For some people, “ignorance is bliss”. It’s easier to be somewhat fatalistic and decide that one’s fate is in divine hands. Que será será. (Whatever will be, will be.) However, many people would like to have some idea of what’s lurking around the corner, even if it’s only the possibility.

The possibility of what? And why are people waiting for GINA? Read the rest of this entry »

“You’re dismissed.”

“Oh, that happens to everyone,” she replied, totally fluffing off my explanations of why it was hard for me to follow just one speaker in a room full of talking people, and to understand what was being said.

“That happens to me sometimes, and I don’t have a problem with it,” he replied, and turned back to reading his journal. My explanation had been summarily dismissed as nothing more than an excuse, and my presence was likewise dismissed.

There are a number of ways that a majority can oppress a minority, beyond the more overt outright exploitation (uneven benefits from the result of work done by some) or violence (previously discussed with regards to hate groups, here). There are the more covert means by exclusion or marginalisation Read the rest of this entry »

The Words

They lied.

One sentence; two words. Together, two very powerful words.

As the beginning, those two words beg more questions than they answer. Who lied? What about? To whom? When, where, and why? 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 »

Failing to Cheat

My fourth-grade teacher Miss V is standing at the front of the classroom, writing something on the board and announcing the next assignment to the class. I am bobbing and straining to see around the four ranks of students in front of me, watching her gracefully stroking the chalk along the board to produce words in her perfect penmanship. The capitals swirl impressively, and her near-lack of spacing turns the words into ribbons of elegant loops and curls. I blink at it several times, and my focus finally shifts; pop! the calligraphy resolves into the vocabulary words “Huron” and “Michigan”.

I realise that today’s social studies lesson must be about geography, and we are studying the Great Lakes. I bet she’ll ask who remembers all of them, so I am mentally scrambling to remember all five lakes; there are always one or two that escape my mental list, as I don’t know any mnemonics for them. (Then again, remembering mnemonics can be even more difficult than remembering the original names.)

Wait a minute! Didn’t we color a map last week? I’d better pull that out to have it on hand. I feel proud for having thought of that, and know that Miss V will be very pleased that I’d been able to anticipate that part of her teaching strategy. Humming contentedly, I scoot my chair back so I can rummage around the inside of my school desk. In this classroom the school desks are solid metal shelves underneath heavy tabletops. I have what will decades later be known as ADHD, and not surprisingly the interior of my desk is a chaotic tangle of pencils, crayon bits, mashed-up assignment pages in various stages of completion, cool rocks, a forgotten/unsigned permission slip, well-worn erasers including one with thumb tacks (push pins) stuck in to turn it into a car, text books, treasured bits of shiny colored foil, pages of stories and drawings, Matchbox cars, and other débris.

I finally find my map and some of my colored pencils and slap them triumphantly on the desk. Then a pencil rolls off the edge and whilst retrieving it I lean over too far and crash into a neighboring student. Feeling foolish, I concentrate on finishing my preparation by smoothing out the crumpled map. Then I make yet another effort to refocus myself and sit up nice and straight to take a deep breath, responsibly looking toward Miss V – I am ready!

At that point I can see what the students around me have been doing for the past five minutes, and crushingly, I realise that I am totally off task. They aren’t doing anything at all with maps or colored pencils. The other students have some purple mimeographed worksheets out, and are writing on them. The class is quiet, or at least what the Miss V refers to as “quiet”; for me the room is still abuzz with scratching pencils, stuffy breathing, creaking chairs and desks, the ticking clock, playground noises, and the arguments of crows fighting each other for something that had fallen out of a lunch sack. Uh-oh … I freeze, feeling clammy and prickly, and my focal field tunnels down to encompass no more than a swirl in the desktop laminate.

Oh no, what am I supposed to be doing? What had I missed when she was talking towards the chalkboard? I’m stuck in short focus – I have peripheral vision but am not making any sense of it, so anything written on the chalkboard on the other side of the room has just become totally inaccessible to me.

This isn’t the first time I have gotten distracted, or have had an auditory or visual processing blip, or simply haven’t been able to see around the older-and-bigger students and thus misunderstood an assignment. So I know that if I once again ask the teacher what she just said I would get in trouble for “not paying attention”, and if I once again ask a nearby student what the Miss V said I would get in trouble for “talking out of turn”.

I need to do something to figure out what I should be doing … I will just check my neighbor’s page to see what the subject is, and what we are supposed to be doing. Having already annoyed one student by nearly falling on them, I graciously lean the other direction – thus unintentionally managing to annoy two students in as many minutes.

Suddenly Miss V is there looming over me, and her reprimands swirl around in my mind, the sentences weaving together and echoing in broken chunks. She is glaring at me, and once again I am unable to make eye contact so am staring at the ruffles on her pink blouse, stammering as I try to explain, “I was jus’JUST looking at oowwwhat she was doing …”

And that is why I appeared noncompliant and dishonest, and how I got into trouble for cheating on the reading worksheet about the Huron Indians.

Sometimes what looks like cheating isn’t. Rather, what we have is a student who is utilizing other environmental sources to get needed information. The distinction here is that the student is looking at another’s materials not for the answers to the assignment, but rather answers about the assignment, such as which pages or problems are assigned, or how the work is to be performed (e.g. in the book, on a piece of paper, writing out the questions or just the answers, putting spelling words in sentences or just writing them multiple times).

After all, it’s generally thought a child with perfect hearing should be able to understand directions. Included in this are the assumptions that in addition to basic sensory hearing, “hearing” includes being able to maintain attention (listening), being able to understand what is heard (decoding), and also knowing what is meant by those words (interpreting).

Corrective lenses should also mean that the child can see the board as well as anyone else. Included in this are the assumptions that in addition to basic sensory vision, “seeing” means being able to maintain attention from the beginning to the ending of the writing process (watching), being able to orient and select what is seen (discriminating), and also being able to decode what is meant by partially-written instructions (inferring).

Lastly, it’s generally thought that an intelligent child should be able to put it all together, to integrate the sensory information, and then turn around and express that processing appropriately, in task performance (planning and execution), in verbal responses (articulation), and in nonverbal responses.

Sadly, many people have never considered how many steps there are to processing sensory information. Next time you have a student who appears off-task, noncompliant, willful, rebellious or deceitful, don’t automatically assume that the student is misbehaving on purpose. This is too simplistic. It’s not always about the student trying to aggravate you – it may not be about you at all. Sometimes won’t is really can’t. And sometimes can’t is really can’t always.

Tailor-Made

Tailor-made, I was.
Though all my clothes hung on me
And I was awkward as hell
Shoelaces usually tripped undone
And my hair ties came loose.

Tailor-made for being the victim
Geeky, younger, smaller, four-eyed,
Clumsy, studious, totally clueless
Socially awkward, unpopular
And best of all, face-blind.

I never knew who it was that poked me with pins
Stole my purse, squashed my lunch
Took my street clothes while in gym
Groped barely-developing breasts
Slammed me against the lockers.

Smeared clay on my chair like shit
Marked on my books, tore my assignments
Called me names, oh so many names
Or briefly pretended to befriend me
To make me the butt of a joke.

Not that I didn’t protest repeatedly
I reported the abuses properly
Told many official, protective people
Friends, family, teachers, administrators
But their responses were unilateral

“Boys will be boys,” said dad.
“You’re just being whiney,” said mom.
“If you can’t tell us who these people are,
that you ‘think’ are doing things to you,
then we can’t do anything,” said the officials.

Perhaps the real problem
Was not in what I said,
But that I was speaking up.
When I asserted myself
They redefined my reality.

Saying that what I perceived did not exist
That I was crazy, hallucinating, or on drugs
That I was just trying to attract attention
That I was making things up
When I wasn’t.

The perfect victim is someone
Who can’t identify the people that did things
Who tries to be good and please people
Who misses danger cues
Who is easy to silence.

The anger and frustration at being disbelieved
Turns into confusion and self-doubt
Maybe it’s just me
I must be wrong
Everyone says so.

Depression sinks in
I must be crazy
I keep perceiving this as reality
When everyone says it isn’t so
Isn’t that the logical conclusion?

You must trust people to help you
They are important people
They are the ones in charge
They know what’s best for you
They keep asserting you’re wrong.

When the reality is given to you by others
And they keep changing the story
It’s hard to keep your facts straight.
This is of course is only further proof
That you are crazy, and making things up.

Trust is earned, not demanded.
Funny how trust erodes
When reality is allowed to reassert itself
And I re-assert myself
Even though they re-assert:

I’m just acting out and making up stories.

To Be A Person, or, Not To Be A Person-With

I promised to address “person-first” language. (And my pal David promised to “rip the piss outa [me]”, for which I’m curious what-all he has to say. Then again, I’m really curious as to what all of you readers here have to say; just who ARE you people??)

Person-first language refers to saying things like “person with a hearing loss”, as opposed to someone “being hard-of-hearing’. The philosophy behind this is that the person is more important than an impairment they have; that a person should not be known by a diagnosis. This is a reasonable goal, but like anything, it can be taken to extremes and has been.

I think “person-with” makes better rational linguistic sense when the “with” is a temporary (or preferably temporary) condition, as in “person with broken leg” or “person with cancer”. Person-first language makes all kinds of sense when trying to avoid the bad hospital habit of saying “the emphysema in 402″. The ENT says I am a person with hyperacussis and tinnitus.

Actually, I would end up saying things like, “I am nearsighted and have Auditory Processing Disorder”, and skip the whole person-with scenario. “I am brunette” is infinitely handier than saying “I have (or am a person with) brunette hair”. It’s understood that it’s my hair color we’re talking about, and that a description of me is only slightly delineated by that descriptor – I’m more than my hair.

When the condition is rather a state of being — something fairly permanent, whether acquired or developmental — then it’s (noun) as in autistic, Deaf, gay, male, dyslexic, Canadian et cetera.

Person-first can be prissy and awkward and sometimes is simply benign earnestness at being polite – well-intended but treacly. Or, person-first can be Politically Correct at its most obnoxious, demonstrating a belief that the condition is “recoverable” and thus meaning something should be done about it. At its worst, person-first demonstrates a belief that the condition is shameful, to be avoided or hidden, such as a person with homosexual tendencies who just needs a good dose of religious correction and a burning desire to be morally uprighteous and “normal”.

Early in my life I started doing things left-handed, so they made sure I learned to write with my right hand. And I’m still left-handed. My inner right-handed person was never “recovered” from that pathological condition, because that imaginary person was never there. I’m a lefty who has learned how to be ambidextrous, which often means that I’m clumsy any way I go about it. Trying to pretend I’m really a right-handed person and calling me such never changed that. Likewise, autistics are not broken or diseased neurotypicals, anymore than gays and lesbians are not confused or immoral heterosexuals.

(I just wish there was a better term for “I have ADHD”; ADDer just doesn’t cut it for me. Maybe they’ll rename it – again – and we’ll have a more euphonic term.)

“It wouldn’t be fair.”

Well, it’s that time of year again when I sign up for another class. Being that I’m taking this class at a different college, I have to once again go through the process of filing paperwork with the office that provides access services for students with disabilities. (I’ve long since learned to scan the diagnostic documents into pdf files so I can hand out copies, rather than risk losing or damaging the originals.)

Going through this process leaves me with mixed feelings. On one hand, I’m relieved that someone takes seriously my persistent difficulties with some processes. I’m glad to finally get the accommodations I need. On the other hand, this whole process of getting accommodations, and indeed the system of special education, is a tacit acknowledgement that the current educational system simply doesn’t work well enough for large numbers of students.

The absurd part is that I really don’t need anything extraordinary in the way of accommodations. The things I need aren’t expensive, nor do they require the instructors to do anything radically different in their instruction methods.

My accommodations are to give me “preferential seating” (I sit up front to better see and hear the professor and the board they are writing/projection upon); to have the captions displayed when videos are shown so I can understand all the narration (the students with hearing impairments or who do not have English as their primary language also benefit from the captions); to get copies of lecture notes or PowerPoints so I can be sure of understanding and not missing any of the material being presented, and to have 50% extra time to take tests.

What these do is to allow me to do is to acquire the information being presented, and to demonstrate my mastery of the subject material, at levels on par with my peers. These don’t give me a superior advantage over the other students, but rather help bring me up to the same level. (If many of the other students find they would also very much benefit from these things, then the instructional and evaluation methods need re-assessing – there’s a difference between challenging students and making things hard on them.)

Much of the resistance I have gotten from instructors has been on the issue of “fairness”.

I have failed – flunked – big red “F” on the page – more math tests than I care to remember. Suddenly I am getting A’s in College Algebra and Calculus! So, I am not innumerate. But what the hell happened? I got much better teachers who were able to teach with a variety of methods geared for different learning styles, and they let me take the time I need to finish the tests.

Then I get to a graduate-level statistics course, and talk to the professor at the beginning of the semester, explaining my particular difficulties with transcription errors and such, and ask if I might be able to have extra time if necessary so I can finish my exams. He refuses. He feels that would be “unfair” to the other students. “Everyone gets test anxiety; you will get faster with practice,” he says.

I sigh heavily at this familiar refrain, and throw myself into the subject. Like calculus, statistics lives in a theory world of its own, but I find that I understand the concepts. I read the textbook. I take excellent notes in class (people like to borrow my notes when they miss lectures). I do all the homework. I join a study-group. I do the programming projects and get A’s on them.

Then I get D’s on the first two tests. (Oh no, not again!) I go back and explain my problems once again to my professor – I did not even have time to finish one of the tests! I ask him again for extra time, which he refuses. Finally in high frustration, I end up discussing the situation with my grad school advisor, who pushes through a class Drop (even after the official last-drop date; amazingly, it can be done). I retake the class the next semester, this time with my official paperwork filed so I can have half as much more time to take the tests, and therefore will be able to finish them and be able to double-check my calculations for transpositions and such. I get a perfectly acceptable B grade. I just wanted to be tested on my understanding of the material, not my computational speed!

“It wouldn’t be fair,” said the professor. He missed the point.

Ann Welch* makes some excellent distinctions about the different concepts that are lumped together under sometimes misleading heading of “fairness”.
Equality is about treating everyone the same way because people have the same rights.
Equity is about recognizing and responding according to the amount of effort given by or achievement of a student. Equity can be best determined when everyone has the same equal opportunity.
The third of course is need. Not everyone needs the same things. (After all, no one complains that it’s “unfair” that I get to use bifocals when the rest of the students don’t.)

Highly competitive cultures place great value on equity; you get what you deserve. (The corollary being that you deserve what you get, and if taken to extremes, that if you’re somehow “substandard” you must have deserved it. It’s the old sin model of disability.)

It’s not that people aren’t terribly concerned with fairness. Indeed, children are almost obsessed with fairness, watching every last gram of sweets being doled out, or time and opportunity with entertainments being shared. That sort of fairness is about equality.

Fairness is not just about treating everyone the same; it’s also about giving people what they need.

* Ann B. Welch. 2000. “Responding to Student Concerns about Fairness.”  Teaching Exceptional Children, 33, (2) 36-40

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