When TSA is Terrible Staff Agency

1 July 2016 at 22:16 (Abuse, Accessibility, Deaf / Hard of Hearing, Physical impairments, Travel)

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/

1 Comment

That’s Not Helpful!

3 December 2011 at 3:46 (Accessibility, Advocacy, Coping strategies, Hypermobility, Physical impairments, Work / Employment, WTF?!)

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.

1 Comment

Cartfuls of Spoons

26 May 2009 at 5:06 (Accessibility, ADD/ADHD, Advocacy, Arthritis, Auditory Processing Disorder, Community, Deaf / Hard of Hearing, Gardening, Inclusiveness, Invisible disabilities, Physical impairments, Work / Employment)

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 …

4 Comments

Piques and Valleys

25 February 2009 at 3:35 (Advocacy, Autism/Asperger's, Behaviour management, Hate groups, Inclusiveness, OMG, Parenting, Physical impairments, Teaching/Tutoring, Work / Employment)

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

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

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

In an brief article in the New York Times, researchers from the Albert Einstein College of Medicine studied some 11,000 third-grade students, and found that Read the rest of this entry »

8 Comments

Pistol-packing gimpy gal

31 December 2008 at 23:36 (Physical impairments, Wordless Wednesday)

Last summer my daughter visited House on the Rock and took this photograph of a woman’s wooden leg (presumably stored in a cedar chest).  What I found intriguing was the storage compartment built above the knee to hide a Derringer pistol.  There’s gotta be a story behind that!

Velvet-lined case holding a wood transfemoral prosthesis with attached shoe.

Velvet-lined case holding a wood transfemoral prosthesis with attached shoe.

6 Comments

Excuses, excuses

21 October 2008 at 4:57 (Accessibility, Advocacy, Inclusiveness, Invisible disabilities, OMG, Physical impairments, Rants, Work / Employment)

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 »

6 Comments

Shucks, not Disabled

14 April 2008 at 1:35 (Accessibility, Family, Physical impairments)

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 »

6 Comments

Budget Issues

2 April 2008 at 0:30 (Arthritis, Coping strategies, Pain, Physical impairments, Sleep, Stress)

There are a lot of difficult things with getting used to a condition that causes regular pain or chronic fatigue. Part of it is just getting used to the idea that there is no quick fix, that this is the New Normal in our lives.

Part of it is realising that medication and treatments will alleviate some of the pain, but that they don’t always eliminate it. Even if we’re not feeling horribly crappy, that doesn’t mean we can just blaze through the day like we used to. The reductions in overall capacity from tiring and/or painful conditions create additional problems that are not always easy to anticipate.

There are the social issues, of not wanting to sound whiney, but also of needing to advocate for ourselves, and either forgo doing some things or request accommodations for others. Meanwhile, everyone else is still working on the idea that relieving pain means making-it-go-away, and that “if you’re not in pain, then you can do everything just like normal”.

There are weighing issues of prioritising things. When we don’t fully adjust to this new normal, it can be partly denial, and partly not realising just how much the condition permeates things in life. It’s one thing to say, “I’m hurting, I’m not going to do this right now,” or “Doing that causes me too much wear and tear so I’m going to do this instead.”

But it’s quite another to realise that we can’t keep putting things off until “I have more energy” or “I have more time” or “When I’m feeling better in the afternoon”. In reality even though there are better times of day or just better days, and even though we find alternative means, what we find is that we still can’t do all those things.

We can do them, but we can only do some of them. When we’re having a good afternoon or a better day, we then find that we have a backlog of Things To Do. In truth, there was no way we could really could do all of them previously in our lives, which is why everyone has those long To do Lists in the first place!

There are budgeting issues of allotting energy. In the new normal, we not only can do less because we have fewer good time periods, but also because we have to pace ourselves. If we push ourselves too hard, then we crash and feel worse than we would have otherwise, and will just get even behinder. (And both the crashing and the getting behinder result in being grumpier, making us and everyone around us miserable.)

What makes pain such a bastard is not just the direct issue of hurting — a lot and frequently, or variably and all the time — but also the secondary issues of pain causes stress and stress aggravates pain and the dreadful feedback loops.

Chronic stress-pain loops can result in not having much appetite (so not eating regularly or nutritious foods), being more sensitive to the ordinary incidental pains in life as well as the chronic issues, getting more easily stuck in anxious, obsessive or depressive states, having depressed immune responses, and of course, it can create the whole horrible pain-bad sleep feedback loop. There’s nothing like chronic pain to make one realise just how inter-related psyche and soma really are.

Chronic issues mean not having much in the way of energy reserves. It can be really easy to fall into a bad habit of “cheating” the budgeting or pacing by relying upon crisis energy. Lots of people (especially those with AD/HD) rely upon the “salvation by deadline” to get them energised to do or complete a task. But this kind of crisis energy is really hard on the body because it relies upon the adrenaline from the sense of crisis. Once that adrenaline rush is past, we crash. It’s a way of pushing ourselves that is counter-productive in the long run.

People who are able to integrate the new normal successfully throughout their lives are those who do best with chronic issues. The novelty fades and the issue is simply another part of their life. Acceptance is not the same thing as giving up. We can accept that we have problems without abandoning efforts to find new ways of improving things.

Prioritising and budgeting energy are important components of the adjustment, just are various therapeutic approaches and regular stress management. Energy prioritising and budgeting are especially important because they are less about what we cannot do, and are more about enabling ourselves to do things that are important.

Whatever “important” gets re-defined as.

“But pain… seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?”
~Lois McMaster Bujold

2 Comments

Natural Therapy

19 March 2008 at 5:24 (Arthritis, Hypermobility, Pain, Physical impairments, Sleep)

Last night I was digging through a giant box full of 35mm transparencies (slides) looking for specific pictures for a new class I’m teaching in a couple of weeks. Naturally, the effort took far longer than I anticipated, partly because I kept finding other interesting pictures, such as vacation photos. I finally did find what I was looking for, but once again, it was after midnight before I got to sleep.

One picture was of me back in 2000 when I was building our backyard pond. Kitted out in a tank top, a pair of knee-length boy’s cargo shorts, a pair of leather gloves and my hiking boots, I was hardly a fashion plate. But boy was I buff. I had muscles, and it showed because I was holding a very large chunk of limestone up above waist level. The long rock was about six inches / fifteen centimeters thick and wide, and stood on end it would have reached my hip bone. The piece weighed about 90 pounds / 41 kilos, which is less than I’ve ever weighed as an adult, so hardly something braggable in the world of bench-pressing barbells, but it was still a respectable lunk of solid rock to be schlepping about.

Nowadays the arthritis slows down the yard work considerably. I can’t work as long, and it takes me longer to get going in the morning because I have to eat before taking my meds. Continuing to do some form of weight-bearing exercise is important to avoid the osteoporosis that runs through my maternal line. But I also have to take care to protect my joints against non-Tennis-playing Elbow and the stupid shoulder subluxation.

I have to force myself to work out at home or the gym during the winter. Frankly, this winter I’ve been especially lax in doing so, partly because by the time I get off work I’m so tired and achey I can’t bear to go to the gym.

It’s funny though, how if you have a physical impairment, what would ordinarily be getting exercise somehow gets turned into Receiving Therapy after its trip through the “disability grinder”.

The last time I visited the “Physical Terrorist” was a few years ago when I went to the university clinic for something-or-another. I left with some over-photocopied handouts describing exercises, and a prize (better than any shiny piece of costume jewelry from the dentist’s “treasure chest”), my beloved rice sock for re-heating and draping across sore places.

The PT encouraged me to come back for more therapy, but I found the exercises to be sufficiently effective on my own. I’m not keen on people manipulating my body. Other people think that if my joints can move within the normal range of motion, that I must be okay. But in truth it means that I’m actually injured and stiff because they are reduced in range of motion from my usual hypermobile state. It’s also hard to convince them that I normally have oddly-placed or large bruises about my body, and that I really can’t remember getting them, and that “No, nobody is abusing me, thanks for asking.”

Any kind of therapeutic exercise is more fun, easier to do, more beneficial, and more likely to be engaged in and maintained if it is combined with one’s daily activities, rather than done strictly as PT or gym exercises. I continue to schlep my briefcase or luggage-size tote with my teaching references around campus (frequently switching which side I’m carrying it on), and try to get in as many staircases as the routes require during the day.

The turnabout is that even dull exercises can be more inspired or inspiring if I think of them as antecedants for doing the fun stuff. I need to start stretching out and doing dumbbell reps again, because spring lurks around the corner.

The daffodils are poking up through the mud and leaf litter, reminding me that I need to rake. And once gardening season starts, I can get in lots of stretching, range of motion exercise, weight-lifting, deep knee bends et cetera, just from fun things like turning over and hauling compost, digging, planting, weeding, deadheading and all those other fun “chores”.

I’ll just be doing them for an hour at a time now, instead of eight hours solid. I hear it’s warmish and sunny tomorrow …

3 Comments

22 Things That Give Crippled Trekkers Away in “Normal” Company

12 March 2008 at 17:14 (Geeks, Humor/ Fun Stuff, Physical impairments)

This is a pass-along joke rather than something I’ve written — I don’t even use a wheelchair, but it’s too irresistibly geeky to not share! Need I mention that our children grew up watching Star Trek: Next Generation? Or that one of our cats actually is named Spot?

22. You have tried to breed legless hamsters so you can have a Tribble.

21. You write the President to let you join the Navy. Not to get PWD into the services but just so you can serve on a ship named “Enterprise.”

20. When you go to vote and the polling place is not accessible, you flip open your cell phone and say loud enough for the voting officials to hear, “Now would be a good time, Scotty! One to beam up!”

19. Bombed out of your mind at the office Christmas party, you attempt the “Vulcan nerve pinch” on the guy who keeps leaving his brief case on the floor in your way.

18. You never really finished college, yet you have a “Federation Academy of Technology” or “Vulcan Academy of Science” sticker, proudly posted on the battery box of your wheelchair.

17. During an argument with your city manager about finally getting more curb cuts downtown you call him an “ugly bag of mostly water.”

16. When you get out of your wheelchair and onto the toilet you say, in your best Patrick Stewart voice, “Transfer of data is complete.”

15. You once seriously hurt your roommate trying to figure out how to do that Vulcan neck-pinch thing.

14. You get so confused when people don’t understand why it goes against the Prime Directive to help little old ladies with walkers across the street.

13. When speaking about nuclear disarmament, you sneer at the idea that the able bodied can be trusted not to exploit any sign of weakness.

12. Every piece of your durable medical equipment somehow reflects something Trekkie.

11. You work words like “warp”, “blue alert”, “imzadi,” and “p’toQ” into disability jokes.

10. Your bulletin board at work looks like an ad for Paramount and is SO interesting your co-workers pull up a chair to look at it so they don’t miss anything new you’ve added at wheelchair user level..

9. You wear your communicator pin on your wheelchairs safety strap for convenience.

8. You’re giving blood at the lab, and you start singing “You tiny little life-forms…”

7. You shave your head to look “really hot” but friends start asking you if you have cancer, too, besides just being crippled.

6. The “warp factor” modifications you’ve made to your wheelchair’s joy stick box…

5. When people really irritate you, like when they offer to hold open a door for you, you say “No thanks, I can get it,” but they do anyway and then stand in front of the door so you can’t roll on through, you whip out your dustbuster, point it at them, and make a buzzing noise.

4. “Fully functional” has a very special meaning for you.

3. You get a cat instead of a service dog just so you can name it “Spot.”

2. That pointy-eared guy tattooed on your shoulder has prosthetics for all four limbs.

1. Whenever you get off the mainline bus you don’t just say goodbye to the driver, you make the Vulcan V-sign and tell everyone on board to live long and prosper.

The joke comes from Crip Humor ~ By and For the Severely Euphemized. You too can get a motley collection of disability-related funnies in your e-mail box by sending a blank post to: CripHumor-subscribe [at] topica [dot] com

9 Comments

“Superstition ain’t the way”

29 December 2007 at 0:09 (Abuse, Autism/Asperger's, Injustice, Medical Quackery, Physical impairments, Rants, Vaccines)

Very superstitious, writing’s on the wall.
Very superstitious, ladder’s ’bout to fall.
Thirteen-month-old baby broke the looking glass.
Seven years of bad luck, the good things in your past.
When you believe in things that you don’t understand, then you suffer.
Superstition ain’t the way.

(Part of the lyrics to “Superstition” by Stevie Wonder)

I recently heard on BBC Radio 4 news a story about an effort by the AfriKids organisation located in Ghana. From the AfriKids Web site, they explain:

… a child born with deformities or defining characteristics in the area was considered a ‘spirit child‘ who must therefore not be allowed to live with humans, for fear they will bring bad luck into the lives of the family. Such children, the paper gathered, were subjected to various forms of inhumane treatment aimed at terminating their lives.

To prove their innocence, the deformed infants are given deadly locally prepared concoctions, which the people believe can only kill ‘spirit children’.The practice has been with the people for ages. Until the interventions of some NGOs including Afrikids, the people in the area generally accepted the practice as a traditional norm, which should be conserved and continued.

There are a number of reasons why a child may be born with various deformities, including random genetic chance, maternal malnutrition, and diseases such as polio or rubella. Of course, polio and rubella can be prevented by vaccination. Other news in recent years included Nigeria, where polio vaccines were strongly resisted by local authorities (this article from New Scientist, 18 November 2003):

Laboratory tests by Nigerian scientists have dismissed accusations that the polio vaccine given in a mass immunisation campaign in the country is contaminated with anti-fertility hormones and HIV.

The World Health Organization (WHO) drive to rid the world of polio hit a major obstacle in October when immunisations were suspended in three regions in northern Nigeria due to rumours that the vaccine was laced with the HIV virus and hormones to render women infertile.

Some Islamic clerics suggested the vaccine is part of a Western plot to depopulate Africa. However, test results from experts recruited by the Supreme Council for Sharia in Nigeria gave the all-clear on Tuesday.

“The vaccine is free of any anti-fertility agents or dangerous disease like HIV,” said Abdulmumini Rafindadi, at the Ahmadu Bello University Teaching Hospital in Zaria, according to the Nigerian newspaper The Guardian.

But before you start getting cocky from your ethnocentric place in some Westernised, “first-world” country, stop and remember: superstition isn’t just for the illiterate third-world masses. Cloaked in modern pseudo-science or religious devotion, it’s enabling our neighbors to abuse and kill children.

Consider Amy Burney, a five-year old girl from the Bronx (New York City) who was poisoned in April 1997:

Convinced that the child was possessed by demons, Angelee Burney and Ms. Downing forced her to drink a toxic brew of ammonia, pepper, vinegar and olive oil, the police said. The women wrapped her body in a floral sheet and tossed it in the garbage bin outside their apartment building in the Kingsbridge section, the police said.

Consider Terrance Cottrell, an eight-year old autistic boy from Milwaukee who was suffocated during an exorcism.

When Junior arrived at the Faith Temple Church he was asked by the minister to lie on the floor. The boy’s trainers were removed to lesson the blows of his kicks. Sheets were also wrapped around him to stop him scratching. During the “prayer” service, Hemphill reportedly used one hand to hold Junior’s head to the floor and one knee to press down on to the boy’s chest. Cooper, meanwhile, held one of Junior’s feet while Tolefree held the other. Another woman, Monica Carver, was lying across the boy’s chest. All the while, Hemphill whispered into Junior’s ear, ordering the demons to leave him. Junior apparently struggled throughout, with Cooper and Tolefree occasionally losing grip of the boy’s feet and the 157lb Hemphill having to bring Junior forcefully under control.

It was only after two hours, however, that the adults noticed Junior was blue in the face, soaked in his own urine and not breathing. When Hemphill heaved himself up, both he and the boy were drenched with sweat. But the boy’s body was lifeless.

Or an un-named 14-year old autistic boy who was severely beaten during an eleven-hour exorcism during August of this year.

Police say the exorcism turned violent and that Uyesugi, under the guise of ‘God’s work’, battered and beat the boy.

“Sticking fingers into the boy’s mouth while he was restrained on the bed, causing him to vomit. And this happened several times. Family said that Mr. Uyesugi told them this was to cast the demons out,” said Detective Swain.

Police say Uyesugi also punched the autistic teen in the face during the ritualistic beating that lasted for eleven hours.

And of course, there are plenty of well-intentioned but misguided parents in the US and UK who refuse to get their children vaccinated for fear they might “catch autistic”, thus allowing the recent outbreaks of measles and mumps, and the resulting disabilities and deaths as described in this previous post.

Oh sure, we’re all intelligent, well-educated peoples. No one does horrible things here like they do in other parts of the world.

Don’t you believe it.

When you believe in things that you don’t understand, then you suffer.
Superstition ain’t the way.

4 Comments

Still Invisible

3 November 2007 at 2:23 (College/University, Invisible disabilities, Physical impairments, Work / Employment)

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

4 Comments

Time to get dressed

19 October 2007 at 1:21 (ADD/ADHD, Arthritis, Coping strategies, Menopause, Physical impairments, Sleep)

There I am, finally dressed and breakfasted and medicated and packed for work. A storm was coming in, so it was actually, finally cold enough to wear a jacket. I pulled my leather bomber jacket and wool fedora from the coat closet, then set my purse and lunch bag down to pull on the jacket.

Meanwhile, hubby comes by from the kitchen to give me a good-bye kiss and observes, “You look like you’re in pain, or tired, or both.”

I nod; it’s both. I’ve been slow getting up and ready in the mornings, hence slow to eat and then take my meds, and the dosage on the arthritis medication was halved to see if that helps the hypertension. My HRT was also dropped for the same reason, so I’ve not had a good night’s sleep the past month due to frequent hot flashes. Kinda sucks, but life goes on.

Then I’m slowly flapping my left arm, trying to get it into my left jacket sleeve, which is absurd because normally I can reach my arm around backwards so much that I can even scratch my own back. Read the rest of this entry »

1 Comment

Crazy People

18 October 2007 at 12:14 (Attribution Errors, Deaf / Hard of Hearing, Physical impairments)

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 »

7 Comments

Fairy dust

16 October 2007 at 0:03 (Accessibility, Physical impairments)

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’.

2 Comments

M, F, N/A

10 October 2007 at 4:59 (Abuse, Accessibility, College/University, Deaf / Hard of Hearing, Developmental disabilities, Gender / Sexuality, Love & Acceptance, Parenting, Physical impairments, Work / Employment)

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 »

11 Comments

Second-hand story

9 October 2007 at 4:31 (Advocacy, Physical impairments)

Well, this is a terribly second-hand review. Which really wouldn’t be fair, so I won’t even try to review the play, because I’m not going to be in town to see it. Instead, I’m reviewing the reviewer, or at least remarking upon the reviewer.

Nonetheless, I was skimming through newspaper headlines this morning, and the New York Times had a review of the play, “The Children of Vonderly”. A few lines by the reviewer, Neil Genzlinger, made me come up short. The review title is, “All families different? Not this different.”

And a paragraph later, the reviewer notes: Read the rest of this entry »

4 Comments

Prove You’re Not A Robot

6 October 2007 at 5:31 (Accessibility, Communication, Deaf / Hard of Hearing, Geeks, Physical impairments)

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 »

14 Comments

Devils and Angels

12 January 2007 at 5:43 (Abuse, Advocacy, Deaf / Hard of Hearing, Developmental disabilities, Inclusiveness, Injustice, Physical impairments)

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.

7 Comments