When TSA is Terrible Staff Agency

This is absolutely inexcusable!

A young woman, Hannah Cohen, has had a tumor removed from her brain, which combined with radiation treatments has made her blind and deaf on her left side, along with limited speech and mobility. She and her mother were flying home to Chattanooga a day post-anaesthesia from another treatment at St Jude hospital. [1]

And then the metal detector went off.

“They wanted to do further scanning, (but) she was reluctant — she didn’t understand what they were about to do,” said her mother, Shirley Cohen.
Cohen said she tried to tell agents with the Transportation Security Administration that her 19-year-old daughter is partially deaf, blind in one eye, paralyzed and easily confused — but she said police kept her away from the security agents. [2]

Disoriented and confused from the metal detector alarms and being grabbed, she was forcibly manhandled hard to the floor making her head injured and bleeding.

Worse, the TSA and Memphis Airport Police did not heed her mother, Shirley Cohen, who repeatedly tried to convey necessary medical information about her daughter, and ensure accommodations.

Two guards grabbed her daughter from both sides, the mother said.
“It freaked her out,” she told The Commercial Appeal. “They didn’t listen to me at all. When they grabbed her, it scared her, and she was trying to get away from them. The next thing I know, one of them slammed her down on the floor and busted her head open. There was blood everywhere.” [1]

The young woman, who was returning home after finishing treatment for the brain tumor at St. Jude Hospital, was arrested and booked into jail.
Authorities eventually threw out the charges against Hannah Cohen, but her family has filed a lawsuit against Memphis police, airport police and the TSA. [2]

[1] http://www.commercialappeal.com/news/courts/lawyers-st-jude-patient-injured-by-airport-security-36949a4b-631b-10b7-e053-0100007f024b-385207351.html

[2] http://www.rawstory.com/2016/07/disabled-woman-beaten-bloody-by-tsa-agents-after-becoming-confused-and-afraid-at-security-checkpoint/

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WE MUST CREATE CHANGE

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

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

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

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

And the next year and the next.

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

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

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

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

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

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

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

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

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

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

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

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

COMMUNICATION IS NOT JUST SPEAKING

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

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

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

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

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

TRAMPLE THE TROPES

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

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

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

STOP “TEACHING TOLERANCE”

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

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

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

STOP THE BLAME

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

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

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

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

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

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

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

THEY’RE FLOATING DOWN-RIVER

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

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

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

ENOUGH WITH THE “DISABILITY INSPIRATION PORN”.

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

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

YES, CHILDREN GROW UP.

YEP, STILL DISABLED, BUT NOW ADULTS

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

YES, PEOPLE ALSO NEED ACCOMMODATIONS;

THAT DOESN’T MEAN “CURE”

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

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

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

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

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

CALL OUT BULLSHIT. REQUIRE ACCOMMODATIONS. DEMAND ACCEPTANCE.

MAKE IT SO.

Stupid Irony!

Someone defined poetry as “life condensed”.  Sometimes I think that disability is life magnified.  Today’s lens is Irony:

  • I dropped my reaching tool behind the bed where I … struggled to reach it.
  • Forgot to take my ADHD meds.
  • Was too stiff to pull on my elastics:  the wrap for my elbow, the two pads for my knees, and the fingertip-less gloves.
  • Nearly in too much pain to remove the child-safe cap from the arthritis medicine.
  • Couldn’t see to find the wee screw that holds in the lens to my eyeglasses.
  • (Similarly,  when my ex-husband couldn’t hear his hearing aid squealing.)
  • Couldn’t understand the voice-mail reminding me of a follow-up visit with the audiologist.
  • Being unsure if that noise I heard in the audiologist’s testing booth was one of the test tones, or my tinnitus.
  • Asked a random store clerk to open the box and unpeel a bandage wrapper so I could stop the bleeding of yet another torn cuticle and pay for said bandages.
  • Sat on the grocery floor because I’d forgotten to wear my knee pads that day, and had to stock boxes of aspirin and arthritis meds.
  • When discussing my difficulties with social interactions with a counselor and mentioned that I thought I was missing things, I was unable to tell just what it was that I was not catching!

And so on, and so on.  Feel free to add some of your own!

Saved by bureaucracy

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

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

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

And then something wonderful happened:

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

SHAZAM!

I was saved by bureaucracy.

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

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

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

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

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

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 …

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.

Resolved

I want to find a local coffeehouse / restaurant / pub that is quiet, damnit! Not whisper-quiet, simply quiet enough where my hubby and I can talk and both hear and understand each other.

I want to find a place that does not employ the latest design conceits of noise magnification: “Hey I know! Let’s eliminating the ceiling tiles to show off the HVAC ductwork. Let’s add lots of sheet metal and concrete floors and other hard surfaces. Let’s have the kitchen open to the dining area, so they can hear the staff yelling at each other, and doing all that food preparation. Let’s eliminate any room dividers, and skip curtains on the windows. Let’s put on loud background music or several televisions — maybe even both!”

It’s one set of issues for me to feel overwhelmed by overly-sociable waiters who want to play “best buds”, or to flinch at the inevitable crash of the broken glass du jour, or pick through menus that are dietary land-mines, but it’s quite another when the two of us have to spend the evening recursively repeating, rephrasing, lipreading and periodically abandoning lines of discussion just because it’s too f—ing loud! (Pardon the cussing; been watching Gordon Ramsay’s restaurant shows.)

Does the general public really think that the background has to be loud for them to have fun? When even the ordinary people can hardly converse without yelling at each other, that means the noise level is too much.

Please. We would be glad to spend our rare dining-out money on a nice cozy place where we can enjoy our food and chat with each other. Good heavens, we might be persuaded to linger long enough to bother ordering a bottle of wine, or some desserts and coffee. We would even want to come back — with our friends.

(Oh, and while you’re at it, could you install some hooks somewhere so I can hang up my hat instead of balancing it on my knee all through dinner?)

I Have Something to Tell You

Well, with all the buzzing going on around more noisome news, I was certainly glad to find something sweet during a recent forage of my news source trapline*. It’s a new-ish piece of Assistive Technology (AT) for communication! But this post isn’t just about a nifty little mechanism (which I’ll get to in a minute); it’s about the social stuff around using ATs to communicate.

A variety of disability bloggers have discussed different electronic mechanisms they use for communicating with others**. There are a number of hurdles faced by users of augmentative communication (aug-comm), and unfortunately they are often greater in number than other kinds of AT. With any tech, there’s always the issues of finding out about it, trying it out, affording it, the learning curve, dealing with maintenance issues, upgrading to newer models when something gets too worn out or is simply too archaic for customer support or technical compatibility, working it in with other hardware in your life (“It’s a great piece of equipment, but my chair doesn’t come with a trailer so I can’t simply schlep it everywhere”) and other annoyances (“How is anyone s’posed to type on these tiny buttons?”).

But communication AT has its own strange set of social-disability type hurdles. Our culture so inextricably links communication with speaking Read the rest of this entry »

Cross-Cultural Communiques

David recently posted the following conundrum in an essay:

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

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

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

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

Cross-Cultural Relationships

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

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

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

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

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

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

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

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

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

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

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

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

 

More captions, w00t!

This is a really quick post, owing to the fact that I need to try for getting more sleep than I got last night, which was of the “not more than four hours, total” interrupted variety.

I just found that those great folks at public television station WGBH in Boston, who pioneered closed-caption television shows lo-these-many-years ago, are taking their captioning efforts further.  They are YES! going to work on providing captioning for all those teeny-tiny screens, our iPods, PDAs, mobile phones and other hand-helds.

This is totally fabulous, because just when we had finally gotten nearly all the television shows captioned, out came these small media players, which then displayed those programs without their captions!

You can read all the details in this press release. 

Crazy People

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

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

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

M, F, N/A

Wow. Here I was ready to comment on one piece of news, when several more caught my attention. They all revolve around social ideas of gender rôles, and marginalised or disabled people.

This first one struck close to home: Khadijah Farmer was kicked out of women’s toilet of a Manhattan, NY, restaurant because the bouncer thought she looked too masculine.

“I said, ‘I am a woman and I am where I am supposed to be,'” said Farmer, speaking at a a news conference. “I offered to show him some identification. I was told that’s neither here nor there.”

Some people might say that happened “just because” she’s a lesbian (like that’s a valid reason), but I can vouch for the same thing happening to me as well. On the occasion that I wear a skirt or dress, I look “appropriately” female. But since I have a really short hair style, and often wear men’s shoes (because I have wide feet) and men’s shirts (because I have broad shoulders and long arms) and am disinclined toward wearing make-up, I have been frequently mistaken for a guy.

Even my name doesn’t seem to help; just last week Read the rest of this entry »

Prove You’re Not A Robot

Several weeks ago hubby emailed me inquiring if I was familiar with accessibility issues related to a Web technology function, “[The bank’s] Internet Banking site prompts users to enter a security code using — I forget what it’s called. It changes every time you sign in. You have to type in what you see. Don’t some people have trouble reading these codes? Do you know what I’m talking about? If so, do you have any links or information about people who have trouble with these verification codes?”

I was rather tickled that he’d asked me, and replied, “Yeah, I know them bastards. 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 »

Accommodating the Normals

In your place of business, educational institution, or public service area, you will have to make certain accommodations for the “normal” (“Temporarily Able-Bodied”) patrons. (Please note that within Normal culture, it is considered appropriate to refer to them as “normal people” rather than as “people with normality”.) Normal people will usually succeed in schooling, and will apply for jobs that they can do, presuming that they are given accommodations. These needs are diverse, and such accommodations include, but are not limited to, the following items: Read the rest of this entry »

Social Captioning

Hubby & I were taking a walk down the neighborhood park pathway. After several “hundred-year-advent floods” that happened within the same decade, the diverse planning committees finally realised that the streamway areas will flood and that it’s easier to work with nature, therefore, they shouldn’t allow building permits in these zones. Instead, they created public use areas that can more-or-less withstand periodic flooding, turning them into neighborhood parks with extensive pathways connecting them like green arteries snaking across the county. The pathway is tarmacked, following the winding curves of the steam, and nicely shaded. Bicyclists, rollerbladers, pedestrians, children seeking adventure, and dog-walkers all use these trails.

Shade also means increased cover, so what one gains in relief from sun exposure one loses in breezes to cool the skin and disperse personal clouds of gnats. I keep forgetting how this obnoxious part of summer affects me personally. Unless most people, I don’t quite have that marching gait where I swing my arms when walking, but am more inclined to hold my free hand(s) near my chest. This means that the insides of my elbows get obnoxiously sweaty and uncomfortably sticky because the tee shirt sleeves don’t reach that far (perhaps I need to apply a couple extra dabs of antiperspirant). On the other hand, it’s easier to reach over and gently nab my husband’s elbow and pull him close to me, which I do a number of times.

The first time, he protests, “I’m on the right side of the middle!” Indeed, he is more capable of walking in a straight line than I am. Every now and then I trip over my feet, running into curbs or wobbling onto turf.

“On your left!” announces an approaching bicyclist behind us. Read the rest of this entry »

Which Is Better?

When people ask, “Which is better?” for most anything, my response is, “Better for what?”

The same is true for any kind of debate about different teaching approaches, whether the subject is language, mathematics, or how we design classroom environments.

Take for example the whole debate about phonics versus whole-word approaches to reading. Each method is useful in different ways, and to different people. Phonics does give you tools to decode a great many words. But because English is not a strictly phonetic language, phonics can break down in the pronunciation ability, and especially in the spelling ability. One can usually come up a number of phonetically rational ways to spell a word, but only one or two will be correct (e.g. the British kerb and the American curb). So, let’s spell a word (I bet you can come up with even more ways than I’ve listed here!): Read the rest of this entry »

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 »

Are You Registered?

A registry is a listing organizing information. People create registries of all sorts of things, from animal pedigrees to copyrights and domain names. We register for happy things, like our gift preferences with shops when getting married, or anticipating the birth or adoption of a child.

Medically, people register to receive organ donations. Companies may register recipients of prostheses in case there needs to be follow-up care. To prevent or manage epidemics, registries of affected individuals may be kept to monitor disease containment, treatments, and mortality.

People also register pets to help ensure their return. We also register things, generally for licensing and taxation purposes, as some of these can be dangerous items:

Automobiles
Motorcycles / Motorbikes
Aircraft
Boats
Guns
Televisions (dangerous item: yes or no?)

Many landmark events in our lives require moving datasets from one office to another. College students make a number of trips to their uni’s registrar to manage the appropriate transcript transfers. College students with disabilities may choose to register with the uni’s access office if they are to receive accommodations. (Naturally, doing this requires even more paperwork.) Part of getting one’s diploma means that you are now a Papierkrieg veteran (German: “paper war” i.e. bureaucracy).

Once graduated, people in some licensed occupations may be registered to help ensure that agencies can successfully maintain optimum staffing, and people will be able to secure jobs as needed.

To receive various legally sanctioned benefits, people also register major personal events with various local or national government agencies, to acquire the necessary Very Important Pieces of Paper — after all, nothing officially exists without documentation! All but the last two of these are events that people are generally glad to mark in their lives, aside from the bureaucratic hassles associated with such:

Birth (someone else’s)
Marriage / Civil Union
Divorce / Annullment
Travel passport
Work visa
Business partnership
Military service
Death (someone else’s)

Speaking of death, on the darker end of things, groups of humans have been registered for others to monitor who these people were, and where they were. The rationales for these kinds of registration were that the categories of people were a concern to the authorities because of who or what they were. They didn’t have to be proven dangerous, they just might be because they were different. Read the rest of this entry »

International ^DISABLED Women’s Day

Today is International Women’s Day. This year’s theme is: “Ending Impunity for Violence against Women and Girls”

People with disabilities have a variety of difficulties across their lives, not just from the intrinsic problems associated with the disability, but also the handicaps they face socially. Disabled people are much less likely to finish secondary school, even less likely to go on to further education in university, have more difficulties acquiring jobs compared to their equally qualified non-disabled peers, and therefore generally earn less. Around the world, women in general also are much less likely to finish secondary school, even less likely to go on to further education in university, have more difficulties acquiring jobs compared to their equally qualified non-disabled peers, and therefore generally earn even less.

Not surprisingly disabled women fare worse than disabled men. But hey, you don’t have to take my word for it. According to a report by the Independent Living Institute, disabled women:

  • Data referring to the E.U. shows that percentage of employment in men without disability is 76% versus 36% in disabled men. Regarding women, the percentages vary from 55% in non-disabled to 25% in disabled women.
  • Studies done on specific groups (autistic, for example) show that they are more inclined to remain in institutions for longer periods of time than men.
  • There are a lot of barriers that make access to birth control and family planning very difficult, such as physical barriers, communication barriers etc.
  • In hospitals disabled women are used as models for trainee doctors, without previously asking them for their permission. Videos and slides are taken of disabled women to be used as teaching aids without any control over their use.
  • There are permanent debates on the role women are supposed to play, and that assigned to disabled persons. As a result, while women in general are pressured by society to motherhood, disabled women are forced into not having children, and this many times leads to unauthorised sterilisation, or denial of adoption on the basis of the “incapacity of the mother” to take care of them adequately.

In theme with this year’s International Women’s Day, there’s also the issue of violence against women. Again, women who are disabled fare worse off than those who are not. Furthermore, it is even more difficult for women with disabilities to recognise, prevent or stop such problems.

The report goes on to describe the various kinds of violence that happen to women with disabilities. These are described as Active Violence (physical abuse, emotional abuse, sexual abuse, economic abuse) and Passive Violence (physical neglect, emotional neglect). These can be manifested in the following ways:

Physical abuse:
Any direct or indirect action that can damage the life, welfare or health of disabled women, provoking pain, unnecessary suffering or health deficiency.
Manifestations:
* Aggressions in different parts of the body
* Unjustified administration of drugs.
* Restrictions of mobility.
Alert Signs:
* To be found in sedative or nervous conditions.
* Motor dysfunction not due to their disability.
* Signs of physical violence: marks in wrists and ankles, fractures, bites, internal damages, burns, etc.
* Detriment in their remains of physical capacity.

Emotional abuse:
Behaviour model that results from damage to the welfare and emotional balance of a disabled woman.
Manifestations:
* Isolation, prohibiting or limiting the access to means of communication (phone, mail..), to information and to keep in contact with other relatives and neighbours.
* Oral cruelty, by means of insults, constant criticism, making fun of their body, punishments in the presence of others.
* Over protection.
* Speaking, deciding or giving opinions in her name.
* Intimidation, and /or emotional blackmail.
Alert Signs:
* Depression.
* Communication and interrelation difficulties.
* Insecurity, and low self-esteem.

Sexual abuse:
Actions that are a sexual aggression towards disabled women, and can produce physical or emotional harm.
Manifestations:
* Rape.
* Sexual vexation or humiliation.
Alert Signs:
* Marks or/and injuries in genitals.
* Fear to relate with certain people.
* Undesired pregnancies.
* Venereal diseases.

Economical abuse:
Actions that pursue the loss of control and rights on properties, money or family shared inheritances. The use of the image of a disabled woman against her will, to gain money for third persons, is also considered economic abuse.
Manifestations:
* The use of disabled girls or women in mendacity.
* Employing disabled women in poorly paid jobs usually linked to clandestine employment.
* Limiting the access to information and management of personal economy.
* The use of money as a sanction.
* The family denies the access to external economic resources (jobs, grants..).
Alert Signs:
* Depending too much on others.
* Little expectations regarding herself and her personal or professional projection.

Physical neglect:
It is understood as such, the denial or privation of the basic aspects to keep the body in good shape, in relation with health, hygiene and image.
Manifestations:
* Negligence in feeding.
* Personal carelessness.
* Neglecting hygienic measures.
* Lack of supervision.
Alert Signs:
* Malnutrition.
* Frequent illnesses not caused by disability.
* Inadequate cloths regarding sex, climate, and the persons’ handicaps.
* Dirty clothes.
* Long periods of time without supervision.
* Physical problems worsen due to lack of treatment.

Emotional neglect:

Those actions that deny or deprive attention, consideration and respect towards disabled women.
Manifestations:
* Ignoring their existence.
* Giving no value to their opinion.
* Feeling ashamed about them.
Alert Signs:
* Lack of interaction.
* No motivation concerning their personal development.
* Scarce or no participation in family or social activities.

The study came up with the following conclusions:

  • Many disabled women see themselves as subjects of maltreatment and abuse, while society ignores the problem.
  • Many disabled women do not see themselves subjects of violence, because they consider these situations habitual in their lives and associated with disability.
  • Disability is a risk factor when suffering abuse and maltreatment situations, which added to the fact of being a woman, increases the risk to higher rates than those of the violence suffered by women in general.
  • Women with sensorial, learning, and communication problems, are more likely to suffer abuse and violence.
  • Not having the traditional female roles assigned contributes to lower self-esteem and increases vulnerability, elements that favour becoming an object of violence.
  • Violence against disabled women shares common characteristics with the female collective, but has specific characteristics as well.
  • Most professionals in charge of counselling and interventions in maltreatment to women ignore that many disabled women are in the same situation. Either because information does not reach them, or because they do not typify as violent acts those they believe associated to disability.
  • Depending on others to cope in daily life increases the risk of being objects of violent actions. This risk is believed lower when personal assistance is given with former professional training and psychological aptitude.
  • Violence against disabled women has more to do with the fact it is considered an extenuating circumstance that these actions are perpetrated against “a faulty being”, than on using a woman’s body as a demonstration of power and control.

The report goes on to describe specific details from several countries. Near the end, the authors describe some of the difficulties that disabled women face when trying to extricate themselves from abusive situations:

It is extremely difficult for any abused woman to leave a situation of abuse. A woman is hit by a husband or a partner an average of 35 times before she calls the police. Battering undermines self-esteem and can make a woman feel she is somehow responsible for her own abuse. For a woman with a disability, this situation is even more difficult. She may be dependent on her abuser for affection, communication and financial, physical and medical support. If she reports the abuse, she may risk poverty and loss of housing and support. She may fear she will not be heard or believed is she speaks out. She may face further violence, institutionalisation, or loss of her children if she seeks help. She may not have access to information about existing support services for victims of violence. Even if she has this information, many sources of support may not be accessible. She may not be able to contact the police or women’s shelters because they do not have communication devices as telecommunication devices for the deaf. She may not be able to physically leave her situation because of a lack of accessible transportation. Her lack of options may leave her feeling so powerless and despairing that suicide seems the only viable choice. And if she seeks help in dealing with suicidal thoughts or attempts, she is unlikely to find counselling which takes account of her own reality. And so she is left isolated and possibly suicidal.

Just as the problems are multifaceted, so are the solutions. The report recommends:

  • Abusive behaviour needs to be acknowledged as a serious social and in some cases criminal problem, rather than being considered a private matter.
  • Protocols need to be developed for institutions to screen potential employees and volunteers.
  • Protocols need to be developed to address the abuse that occurs in institutional settings.
  • Community living alternatives need to be made available for women with disabilities.
  • Courses need to be made accessible and available to women with disabilities (in self-defence, assertiveness training, and sex education).
  • Appropriate suicide consoling which meets the special needs of women with disabilities needs to be made available.
  • Transition houses and other existing support services need to be made accessible, and frontline workers in shelter facilities need to be sensitised to the needs of women with disabilities.
  • Women with disabilities need to be hired to provide this training and to work in these centres and
  • Women in all communities need to work together develop a co-ordinated approach to dealing with the abuse of all women.

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.

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.

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.)

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