Annoying froms full of wee boxes

So, hat’s my problem wilth filling out forms? “Sure, no one’s fond of it, but it’s not that bad. Just sit down and get it done already.”

Sometimes it’s the essential tremour that makes handwriting shaky.

Someone tell me: WHY are the boxes so damn small?

Then there’s visually tracking back and froth between my pages of information and where data goes into the form. There can be column slippage: No, I don’t have 268 sweaters valued at $10. That would be quite a feat! (I hope none are the ugly Christmas sort. Then again, with 286, who cares?)

Some days it’s reading them form.

That floater smack-bad in the middle of of my left focal point has been there several years. I can mostly work around that.
But there are the days when I’m having semi-dyslexic issues.
Like today when I’m filling out a shipping form, and their Sports Equipment* list includes:
Goll Chubs
Brow Bonads
Winq Suder
Stakes
Tannins

Which often goes ahnd in hand with writing the numbers. I can read a large percentage correctly and those I know them in my head straight, but when saying or writing them they get turned inside out; 5600 is 650, or 277 is 227.

Oh sure, Just. Fill. It. Out.
Then I check it forwards. And I chcek it backwards.

QUESTION: What sort of strategies do you use?

* Those are Golf Clubs, Snow Boards, Wind Surfer, Skates, and Tennis

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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/

WE MUST CREATE CHANGE

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

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

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

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

And the next year and the next.

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

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

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

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

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

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

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

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

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

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

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

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

COMMUNICATION IS NOT JUST SPEAKING

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

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

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

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

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

TRAMPLE THE TROPES

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

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

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

STOP “TEACHING TOLERANCE”

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

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

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

STOP THE BLAME

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

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

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

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

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

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

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

THEY’RE FLOATING DOWN-RIVER

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

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

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

ENOUGH WITH THE “DISABILITY INSPIRATION PORN”.

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

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

YES, CHILDREN GROW UP.

YEP, STILL DISABLED, BUT NOW ADULTS

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

YES, PEOPLE ALSO NEED ACCOMMODATIONS;

THAT DOESN’T MEAN “CURE”

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

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

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

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

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

CALL OUT BULLSHIT. REQUIRE ACCOMMODATIONS. DEMAND ACCEPTANCE.

MAKE IT SO.

Having Fun Pushing Limits

I was on the radio! :: hyperactive bouncing ::  You should listen to the show — there are links below.

Adrienne Lauby and Shelley Berman, co-hosts of Berkeley, California’s KPFA “Pushing Limits” disability program, invited Mike Ervin, advocate and blogger of Smart Ass Cripple and me to talk about “The Wild World of Disability on the Internet.” Is that fun or what?

Broadcasting is always giddy: I get to talk with interesting people I wouldn’t have otherwise, and the experience is recorded to share with all of you!

Between my ADHD and Auditory Processing glitches, I was worried about accidentally interrupting folks, but I don’t think we had too much trouble with that. It’s always curious to go back and listen to it myself, because one’s voice never sounds as low pitched as it does inside your head. But when I’m speaking, I’m on “live” rather than “Memorex”, and it’s cool to be able to rewind life and hear what happened.

Mike Ervin and I were unfamiliar with each other, but when you get four people together who are passionate about the same things (including hosts who can lead out introductory stories) there is no awkward stage — we hit it off quickly, and Mike has a wicked wit.

Of course, we could have easily spent an hour riotously remarking about activism, attribution errors and other topics. We did talk about those, and amazingly, with less than eight minutes apiece, we also talked about accessibility, myths, inspiration-p*rn, othering, home-care, how blogging “levels the playing field” and more. It was great fun!

(Oh, and related to a question on fidgeting, I mentioned an XKCD cartoon, which I’ve included — with descriptions — at the bottom of this post.)

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

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

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

3. Click on this download hyperlink:

Pushing Limits – July 6, 2012 at 2:30pm

Click to listen (or download)

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

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

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

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

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

 

That’s Not Helpful!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“You’re really good at that!”

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

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

“Wow, look at you go!”

And of course, it’s pitying. 

“Oh, you poor thing!”

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

That’s not helpful.

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

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

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

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

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

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

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

::CRINGE::

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

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

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

Otherwise, that’s not helpful.

Mis-Expressed Lane

Today I’m on the Express Lane. (“12 items or less” — that ought to read “12 items or fewer”, but groceries are hardly models of grammar and punctuation.)  I’m not a “number Nazi” — if the other registers are busy, I don’t care if you’ve two dozen items; my goal is to get you checked out and on your way.   It’s a good thing I’m on the express lane, because I have to keep pausing:

“Ah-CHOO! Ah-CHOO!” I remove my face from my elbow, and turn back to my register, where I rub my hands with sanitizer foam.

“Hi there!  Did you find everything for which you were looking?”  bleep, bleep, bleep, bleep, bleep, bleep “Any coupons?” bleep “Okay, that’ll be $14.67, if you please.”

“What if I don’t please?”  grins a puckish guy.

“That’ll still be $14.67,” I grin back.  “Out of $20?  That’s $5.33 in change, there’s the 33 cents, and 5 — ” I screw up my face long enough to turn away — “Ah-CHOO! Ah-CHOO!” I remove my face from my elbow, and return back to my register, where I rub my hands with sanitizer foam.

“I got my receipt.”

“Thank you; here’s your bag. You have a good day.”

Two hours later, I’m still sneezing.  (Twice at a time; I sneeze twice, my kids sneeze twice, and my grandson sneezes twice.  Funny what-all the genome encodes.)

One of the mysteries of retail is that no matter when people arrive at the store, “everybody” wants to check out at once.  There are lulls, and then there are lines, and lulls again that enable me to wipe the schmutz off the scanner glass, straighten up the candy bars, and finish unwrapping partially-peeled rolls of coins.

Hah-CHOO! Hah-CHOO!” Once again, I remove my face from my elbow, and return back to my register, where I re-rub my now-chapped hands with sanitizer foam.

During such a lull, I speak across the eight-feet gap to another checker, “Are you wearing perfume?”  When she replies affirmatively, I surmise, “Oh, that must be why I’m sneezing.”

“Oh, it’s not very strong.  And I only use a little.  It smells very nice,” she asserts, sniffing her sleeve, “I put it on at 5:30 this morning!”

So what if that was hours ago? Hun, if I’m sneezing this far away, it’s stronger than you think.

Ah-pppbllh! Ah-pppbllh! *sniff*” I go up to the Customer Service desk for a handful of tissues, and return to check the next cluster of customers.

Come the next lull, she wanders over, defensively insisting that her perfume isn’t strong.  “Maybe I’m catching something,” I offer as a conciliatory alternative, wondering if my affect had not come across the right way earlier.  She appears to be one of those really social people who liked to chit-chat with others, and I’ve begun to realize that in such interchanges, style trumps content, and “verbal grooming” trumps practical considerations.

Thankfully this was just a four-hour shift, because my night’s sleep had not been much longer than that.  I go home for lunch and after my short nap, am not surprised to find that I’m no longer sneezing.

And that, O Best Beloved, is why I don’t wear scented body products during any of my jobs.

Web buzzing

Just wanted to share some cool things I found recently!

INSECT-RELATED FUN

Amazonian ants apparently adore Tetris – ’tis a tee from Threadless Tees.

Cartoon with a green background, the upper half with five army ants on a branch, carrying pieces of leaves cut into various Tetris shapes. Below, the crowned queen ant awaits by a Tetris-shaped stack of pieces. (Unfortunately, she's about to get a square and won't have a place to set it!)

and,

NPR has a short episode with guest comments by the inimitable entolomogist and highly entertaining author, May Berenbaum,

There has been a worldwide proliferation of urinal flies, observed May Berenbaum, head of the department of entomology at the University of Illinois in her new book The Earwig’s Tail.

You can listen to the episode and/or read the transcript, “There’s A Fly In My Urinal”.

realistic black and white fly decal

and,

Jessica (the painter) and James (the author) of Project InSECT have a couple of books out, How Mildred Became Famous (book I and book II).  Mildred is a mantis, and one of the many gorgeous, large paintings that Jessica has done.

Detailed painting of Mildred, the praying mantis, plain chiaroscuro background

GARDENING / NATURE

A brief video:  One year in 40 seconds. Eirik Solheim’s gorgeous time-lapse of Norweigian woods.  Suitably short for the ADHD brain or a coffee break.  (Alas, I’ve tried several ways to get this URL embedded so it will display from this post, but WordPress is being funky.  So you’ll just have to copy-paste it to get to the YouTube page directly.)

youtube=http://www.youtube.com/watch?v=lmIFXIXQQ_E

and of course, a bit of geeky

ACCESSIBILITY


A dismotivational poster with the image of a Dalek (robot from Dr Who show) stuck in a concrete room with only stairs as a means of exit; its word balloon says, "FUCK". The poster caption is, "LIMITATIONS everyone has them"

Getting there … or, Not.

The other day, my daughter sent me a link to this post by Xenakis, which describes the wonderful side of Universal Design. In other words, build something right from the start, and you won’t have to go back and tack on ugly access structures.

plaza in Robson Square, Vancouver, with long flight of stairs and ramps making diagonal switchbacks up the hill

plaza in Robson Square, Vancouver, with ramps making diagonal switchbacks across the long flight of stairs up the hill

There are a few problems I can see with this approach.  One is that it might be too easy for a wheelie to get off-ramp — perhaps there are guiding impediments that I can’t see in the image. Also, someone commenting on Xenakis’ post, points out that people who walk up ramps often need hand rails, and the rails are only along the stairs. Personally, I would also like to see some kind of contrast striping between the stairs and the ramps; can you imagine going up or down this in a rainy, dark night?

Nonetheless, it’s still a really cool advancement over the traditional Deep Flight of Stairs Up to an Official Building.

Next up in today’s post on accessibility:  some pix from the Fail Blog. When access is SO BAD that everyone but the installer can tell that It Sucketh, Big Time:

Stucco building with Female and Male bathroom signs over two doors, and between those, a Handicapped sign over a shuttered window

Stucco building with Female and Male bathroom signs over two doors, and between those, a Handicapped sign over a shuttered window

Escalator with a wall neatly built right at the first moving step up/down

Escalator with a wall neatly built right at the first moving step up/down

A man in sandals demonstrates the futility of trying to climb up a concrete doorway ramp (marked with Handicapped emblem) that is at least a 30° angle upwards

A man in sandals demonstrates the futility of trying to climb up a concrete doorway ramp (marked with Handicapped emblem) that is at least a 30° angle upwards

And last but not least (just for grins), Teh Dumb from a hospital somewhere. I’m not fond of MRI machines from the comfort perspective, for all they can make great pictures. The last time I was in one, I wore ear plugs and they gave me the clam-shell headphones to help block out some of the noise. But I have hyperacussis and tinnitus, and 45 minutes later my head was ringing so badly, I slithered off the padded bench and crumpled to the floor.

Powerful MRI with metal hospital bed pulled off the floor and stuck to opening

Powerful MRI with metal hospital bed pulled off the floor and stuck to opening

Hanging around the Web

Cruising the Web BW

A shiny robot spider hangs upside-down from a metal mesh

My son and I recently hauled a long dresser+mirror up two flights of stairs, and I cleaned up the master bedroom in preparation for the return of the new baby & parents from the hospital.  The downside of course is that after a day of labor, I must spend a couple-three days recuperating.  (In other words, I used up all my “spoons”, down to the last demitasse.)

I’m also on Day 2 of one of those low-grade-three-day migraines.  Right now it’s manifesting as misreads, which when I catch myself is kind of entertaining:

In light of all that, I thought I’d share some interesting reads/cool finds on the Web recently:

My sleep-deprived daughter would be envious of ant queens, who spend nine hours a day sleeping, while the workers must squeeze in micro-naps.

From the world of delightful architecture, an adult tree[less] house shaped like a bee skep, made of recycled lumber (wheelie adaptation not included).

The CitizenM hotels have the most amazing showers, which look like Star Trek transporter pads.  To start the shower, you simply shut the door.  I don’t know if they’re large enough for a wheelchair transfer to a shower seat, but with the zero-clearance there’s a chance of it (maybe Dave knows). Want!  (Or at least the trés geek LED shower head that changes from blue to red when your water’s hot.)

Reimer Reason posted It’s a Family Reunion! for the most recent Disability Blog Carnival.

In further hexapod news:  while I was distracted by our little geekling, Bug Girl has been faithfully covering Pollinator Week, including important information about CHOCOLATE. For more funs, Cheshire has teh latest Circus of the Spineless up.

And of course, what would a list of fun be without a LOLcat?

Six white kittens lined up and looking at the camera, while a seventh is distracted with a play ball

Six white kittens lined up and looking at the camera, while a seventh is distracted with a play ball. The photo caption reads, "PUZZLE PICTURE Find the kitten who has ADD."

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 …

Accessibility Fail (and Win)

We have a shiny new building on our campus.  It’s gorgeous, with several conference rooms named for money donors, and a huge glassed-in meeting room.  (Other faculty have pointed out that alas, said building isn’t a “LEED-building” meaning that the design lacks certain green/energy-efficient factors.)

What I find annoying about the new building are its access issues.  Oh sure, there are the nominal “handicap” bathroom stalls, and brailled room-number plates.  But the doors to the regular bathroom stalls swing inward, making one do-si-do around the toilet, and the seating areas in the floor lobbies don’t have any electrical outlets nearby for people to plug in their laptops.

Yet these are minor kvetches; what drives me nuts are Read the rest of this entry »

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 »

Going Mobile

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

Once Upon A Time,

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

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

(Moment’s pause to re-thread needle.)

Well, that took a few years, but it worked so well, they weren’t going to stop there! Read the rest of this entry »

Horrid day for a migraine. Could have been worse.

Yesterday: it is very sunny, so bright the out of doors looks like over-exposed photos, all contrasty lights and darks and washed-out colors; even the trees were flickering masses of surface brilliancy against their internal heavy gloom. The previous night’s storms guaranteed humidity and muddy passage, and the tailwinds still rattle across the landscape, scratching the yet-unpruned peach tree branches against the outer wall of my bedroom. A few houses away, there is the repeated doppler roar of someone taking advantage of the clear skies to catch up on overdue mowing.

Cradled between layers of pillows, with the sheet and cotton quilt and heavy wool blanket pulled up to my ears, I lay stiffly. Mostly still asleep and not even close to the stage of stretching groggily or opening my eyes, my conscious awareness surfaces uncertainly through layers of internal sensory checks, transversing clouds of anxious, nonsensical dreams with endlessly repeating plot-less terrors.

For some reason I could not yet fathom, the usual morning physiological data-gathering was running very slowly, as though entire sections of my brain either could not communicate or were withholding information. At times like this, I am highly uneven, having some high cognitive functions but lacking other more basic ones. Pieces of random information drift by, sometimes contained in the phonemes of words that repeat like the short loop of an advertising jingle, but slide away without having been decoded for any meaning. I become briefly aware of just one or two sensory indicators of the outside world: water running through the sink downstairs, or the crackling of a cat’s jaw as it yawns so wide the ears fold backwards.

The mental sticky-notes I told myself at bedtime flutter by intermittently, “I need to get up early to take the bags of brush down to the curb before the truck comes by,” and “I still need to do a prelab and upload it before 11:59 pm,” and “I need to finish that cover letter for the job app,” and “The cable repair person may be here at 8:00 am,” and “I need to drive my daughter back to her college town.” Things to do, people to be, and most of all, irrevocable externally-imposed deadlines to meet. The bad part is, were this a Saturday, this could be much worse.

Slowly the information collects, like tiles of satellite photos that must reach critical mass for the terrain to be understood. One points out that I did yard work yesterday, several short jaunts out to pull weeds from the vegetable patch and to bag the pile of brush. This means I will be achier today, and the stiffness will require me to move about more carefully for a few hours. I should not plan on doing any heavy work today.

But I don’t yet stretch to test my joints, as the recalcitrant parts of my brain yield the messages previously withheld: my head hurts, a pain so large it has expanded beyond my brain case to my eyes, my ears, my nose, my jaw … Read the rest of this entry »

Shucks, not Disabled

Of all the people in the world, my eldest would be the least likely to be dismayed by becoming a “wheelie”. Every time we visited the science museum in Denver, dad and I could always count on at least a solid hour of book-reading time as the kids played with the wheelchairs in the Discovery Zone.

When a staph infection on one knee got especially nasty (round, red and swollen, requiring repeated expulsion of alarming amounts of pus), we scheduled a visit to the doctor. In addition to getting antibiotics and analgesic, there was a good-natured enquiry by the patient if this might not earn the doc’s permit for a wheelchair? After all, mobility was definitely impaired — hobbling between bedroom and bathroom was difficult — and definitely meant unable to hike around the hilly campus. Well, replied the doc, were it both knees he would.

Shucks!

So, time to take the semi-disabled student back to college. I packed up the “Bug of Holding” with the overnight luggage, and we went back to the campus. The swelling made it difficult to bend the knee as well as to put weight on it, which meant that any footwear with laces, zippers or heels was extremely difficult to put on or use. Well, that was essentially all the footwear currently owned, so we stopped by a Target store to get some sandals. Hobbling inside, we espied three wheelchairs lined up near the shopping carts (buggies, trolleys), one of which was motorized.

I was surprised to hear some initial concern about whether the store would allow someone who wasn’t Officially Disabled use one. We were just borrowing one of the regular chairs, not the motorized one, of course they would, I answered. Besides, if anyone gave us grief, they could always be shown the big nasty, which by this point was doing a rather disturbing impression of a mammary gland, “nipple” and all.

So we went down the shoe aisles, and I noted with relief that the aisles were not only wide enough for the chair to get around easily (including U-turns), but also that the store did not have the sort of display clutter at the end-aisles or within the aisles that some stores feel compelled to put everywhere. This is one of the reasons why I prefer shopping at Target (compared to K Mart, or the big-bad-bully of retail, Wal-Mart); the stores are relatively free of excessive visual complexity or navigational hazards.

My eldest quickly realised that some half-gloves would be really helpful if there was going to be much wheelchair usage. That wasn’t the only accessory that would have been required, either. Read the rest of this entry »

Repelled from the Garden

Triocereus candicans

Trichocereus candicans

There are few better times to visit a garden than when everything is unfolding in the fresh new flowers of the season. If you’re visiting a desert garden, spring is nice because it is not as hot as summer.*

I’m a serious “garden-geek” and visit gardens where-ever I travel. Hubby has perforce acquired a taste for gardens, albeit at strictly the tourist level. He has even taken pictures of me squatted or perched in awkward positions as I strain to take pictures of plants, because well, that’s what some of our vacation consisted of. He will (most thankfully) exercise patience as I take pictures of giant compost heaps as well as rare blue poppies or blooming agaves. We have also found that when you’re jetlagged and desperately trying to stay awake to adjust to a distant time zone, a tour of a garden is a perfect way to get the necessary daylight exposure for the inner clock, and is a good opportunity to stretch and exercise airplane-cramped muscles. Even better, it is an attraction that does not place heavy cognitive demands on the visitor just to enjoy it (which is important for those of us who cannot sleep on plane flights).

So when hubby is looking for things to do with his papa, he thinks that a trip through a garden would be a great way to spend time together, and also get a change of scenery. But is the Desert Botanical Garden in Phoenix accessible? Hubby is hard of hearing, so pulling up their Web page on his Blackberry is his first route of information. But he can’t find the information he seeks, and then tries phoning. Unfortunately that just yielded the annoying automated system. When you cannot understand the recorded message, having to go through the entire phone tree again to listen to it a second time is not only frustrating and laborious — the message is also not likely to be any more intelligible the second time around!

Well, this lack of accessible information about site accessibility is really vexing. It’s also really surprising — Phoenix and the surrounding cities are full of seniors, due to the climate. One would hope that large portions of the garden would be accessible for wheelchairs and walkers, but gardens aren’t always. In fact, many botanic gardens have gravel or wood chip pathways, or even put flower beds way out between expansive lawns, which turns garden tourism into wheelie triathalon events.

Meanwhile, I’m hanging around bored in an automotive waiting room as I get a dead headlamp replaced. Receiving his frustrated text message, I then start my own search. Read the rest of this entry »

It’s Not Just Me

“It’s not just me.”

I always feel ambivalent saying that. It’s part, “I’m not nuts or just being whiney, it’s real,” and part “I wouldn’t wish it on anyone else.”

Recent stories on BBC News describe how fluorescent light bulbs are not just good for saving energy — they can also be problematic for some people. The lighting can worsen skin rashes in people with photosensitive conditions, including, “the auto-immune disease lupus, the genetic disorder Xeroderma Pigmentosum (XP), certain forms of eczema and dermatitis, photosensitivity, and porphyria”

It has been estimated about 100,000 people in the UK with these skin conditions will be affected.

ME (Myalgic encephalomyelitis, AKA Chronic Fatigue Syndrome) was also mentioned.

Dr Colin Holden, President of the British Association of Dermatologists, said: “It is important that patients with photosensitive skin eruptions are allowed to use lights that don’t exacerbate their condition.”

The bulbs were also mentioned as potential triggers for migraines or epilepsy.

However, Karen Manning, from the Migraine Action Association, said this could be damaging to some sufferers.
She said that up to six million people in the UK suffer from some sort of migraine attack.
“These bulbs do trigger migraines for some of our members – it’s either the flickering, or the low intensity of the light, causing eye strain.

Some people with AD/HD or autism also complain about similar problems with fluorescent lighting.

Currently there is a plan in the UK to voluntarily phase out incandescent bulbs by 2011, as part of the effort to reduce overall CO2 emissions.  This is important as part of the world-wide effort to reduce global warming; the US could stand to be more proactive.

But we need to remember the important tenant of Universal Design:  there is no one perfect solution for everyone.  Employers, schools and other organisations will need to be able to have options for people, as indicated by the ADA (Americans with Disabilities Act), DDA (Disability Discrimination Act) and similar rulings.  Hopefully advances in LED lighting or other new technologies will result in other products that work well for various purposes.

Not helping my blood pressure

I went to the pharmacy to get some regular prescriptions refilled. Hubby has a new employer, which means we’re under a new insurance plan, which means sharing the newest insurance information with every one of our regular doctors and with the pharmacists. Oh the joys of paperwork – not. This time instead of a co-pay for prescriptions we have a (really, really big) deductible to meet before the insurance pays for things. I can sure vouch that the co-pay system with the previous insurer was a lot less stressful on my blood pressure. OMG the sticker shock!

My $9 blood pressure medication was no big deal. Getting just four migraine pills for $89 was alarming, especially as the kid takes two at a time, but the pharmacist explained that this insurance company only lets them fill four pills at a time. A month’s supply of ADHD meds was $109. (Yes, I’ve tried going without, and were I coping with just ADHD things wouldn’t be as bad, but you don’t want to hear about all the forgotten appointments and scorched pans et cetera; meds are just a part of my coping strategies.) Dang, that was a big check for all that.

Then a couple days later I went back to pick up some meds for hubby. I’ll refrain from details except to mention that when the pharmacist began to ring up his meds, she paused to ask “Do you still wan to fill these ‘scripts for the asthma medsRead the rest of this entry »

I done tol’ you so …

I wasn’t kidding. There’s yet another case up that illustrates the reason why we need the ADA Restoration Act:

Orr used to close his pharmacy for 30 minutes every day at noon, and eat lunch. That helped him control his diabetes. The new boss ordered him to instead stay in the pharmacy and eat between helping customers. Orr tried, but his blood glucose levels fell. He got tired easily.

“When he came in and fired me,” Orr says, “I asked him why I was being fired and he told me straight out: Because you’re diabetic.”

When Orr was fired, he sued under the Americans with Disabilities Act. But a judge threw out his case, agreeing with Wal-Mart that Orr should not be considered disabled under the ADA. The reason: With his insulin, he could control his diabetes.

Um, aren’t employees supposed to have an actual break from work during their lunch breaks? Doesn’t Wally-World have pharmacy technicians who can run the till for half an hour?

Over at her blog, ReunifyGally, andreashettle describes a different case,

Carey was living in Georgia and had 20 years of experience working as an electrician when he applied for a better opportunity at a General Motors’ assembly plant in Arlington, Texas. GM offered Carey the job pending completion of a pre-employment physical examination. During that exam, GM’s physician asked Carey to raise his arms above his head. When he saw that Carey could only get his arms to shoulder level, the physician asked how Carey would perform overhead work. Carey, who had performed such work in the past, responded that he would use a ladder. Despite the fact that other electricians in the plant often used ladders or hydraulic lifts to do overhead work, the physician revoked GM’s offer of employment. (48)

Carey challenged GM’s decision. Even though GM revoked its job offer because of limitations resulting from Carey’s muscular dystrophy,(49) GM argued that Carey did not have a “disability” and was not protected by the ADA.(50)

As I explained before in my August 23rd post, “Mitigating Measures”, you can be considered “too disabled” to do the job, but “not disabled enough” to qualify under the ADA. This is a direct contradiction of what the original ADA was designed to address, and why we need the ADA Restoration Act.

Last time my congressman was in town, I went to visit with him about this issue. Unfortunately, I was too late in the line and ended up with only the opportunity to hand-write a last-minute note for one of his assistants to pass on to him. Some days later, I received a letter in reply. Most of the letter was devoted to describing the purpose and history of the bill, which is nice, but really just so much filler. (Behold the joys of the word-processing generated modifiable form letter.) The actual lines of reply read, “Please be assured of my continued support for programs serving those with disabilities and their families. Rest assured I will keep your views in mind should I have the opportunity to vote on this measure or similar legislation during the 110th Congress.”  Blah-blah-blah … sadly, even this highly-generic reply doesn’t really say how he plans to vote; so at this point, it doesn’t hardly matter which Congress person the letter was from. Argh.

Nonetheless, we must “keep buggerin’ on” …

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. 

Fairy dust

Or maybe it was called pixie dust. Whatever it was Tinkerbell sprinkled over the children in the Peter Pan story that magically allowed them to fly. That’s the ticket — that’s what we needed! Because you know, otherwise we couldn’t fly. (Not even if you wear a superhero cape and jump off your dresser.) We need something, because there are too many incidences of people with disabilities being denied airplane access, such as:

A limbless woman being refused permission to travel alone by Air France, one of whose employees said: “A torso cannot possibly fly on its own”

Actually, neither can torsos with arms and legs. Because we lack wings, humans cannot fly.  That’s why we invented airplanes. And helicopters, and hang gliders and suchlike.

At last a new law in the European Union is ensuring that all sorts of humans can not only get their tickets, but also get on their airplanes, because both holiday (vacation travel) companies and airlines will no longer be able to discriminate against the seven million disabled people who would travel by air around the EU. Furthermore, guide dogs will be allowed on planes, and you can get compensation if your wheelchair or other equipment gets mangled during the trip.

Because we lack wheels, humans cannot roll. That’s why we invented wheelchairs. And bicycles and motorcycles and cars and trains and suchlike. We just keep on truckin’.

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 »

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