Animal Farm

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

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

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

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

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

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

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

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

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

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

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

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Things that bug me

No cheese with this whine, please; I’m out of crackers. It’s HOT — we went from 24°C/75°F weather in the mountains to 40°C/104°F weather back home. It’s humid, too. Weeds grew outrageously in my absence, but I’ve no energy for tackling them when I get home from work. Nor do I have any energy to cook dinner, and no one has any ideas on what they want to eat, either. I need to buy groceries, but don’t know what to get beyond the inevitable milk & toilet paper. The heat saps our appetites. The heat has melted all of my blogging ideas from my brain, and staring at the snippits in my drafts folder doesn’t jog anything.

Boy starts classes tomorrow, and at my school, the students return. I have no idea why it is that Read the rest of this entry »

Things that make my brain hurt

I’ve been busy running bunches of errands and painting walls prior to going on holiday. So here’s some randomness from my mental OMFG drawer:

  • The Really Stupid Things people say. Such as, “Gee, why is it always in the last place you look?” Er … because once you find it, you quit looking.
  • Seeing ” 1 comments ” at the end of a post. Not the fact that someone has commented — that part thrills me — but the plural “comments” after the number one. (Once a proofreader, always a pain in the tuchis.)
  • When my mom used to say, “You know Andrea, all children rebel, but you’re rebelling the wrong way.” Because you know, there’s a right way to rebel.
  • More Really Stupid Things people say. Such as, “Why is the soap dispenser always so dirty? It’s soap.” Er … because people use it when their hands are dirty.
  • The Xtreme Packaging on my migraine medication, as described here. Because when I’m falling faster than 9.8 m/s^2 into a migraine, I really want to chip through TWO layers of cardboard and heavy-duty foil to extricate a pill.
  • Being asked if I want to do This or That, and answering I want to do This. Then a little while later being asked again if I want to do This or That. I reply again I want to do This. Then a little while later being asked AGAIN if I want to — for crying out loud, why keep asking? Do you think that asking me repeatedly is going to change my mind? Why would I want to do That and then say I want to do This? If you heard the first time, why keep asking?
  • The super-bureaucratic allergen warning on a bag of roasted peanuts. Ingredients: peanuts, peanut oil, salt. Warning: contains peanuts. No shit!
  • More Really Stupid Things people say. When I worked in a Customer Service department, one of my co-workers complained, “I could get my work done if it wasn’t for all these customers!”

Feel free to add some of your own in the Comments section.

More than an uncomfortable trend

I shouldn’t read the news before breakfast — it’s bad for the happy digestion of my food. These Acts, Bills and Executive Orders keep piling up. It reminds me of the scene in Harry Potter and the Order of the Phoenix when Professor Dolores Umbridge took over as Head Master, and the walls of Hogwarts were being smothered in edicts. The latest item is just one in many, which creates a more than uncomfortable trend. It’s now a disturbing reality. Let’s see, now we have: Read the rest of this entry »

Dear Inspired,

You said you found me to be “such an inspiration” because I work with people who have special needs, and because I have to deal with so many things myself.

I’m not sure why you find me so damn “inspiring”, Read the rest of this entry »

Can you sue your fairy godmother for malpractice?

I always thought it would be cool to have a superpower. You know, be able to fly, be invisible, walk through walls, be utterly graceful … impossible things like those.

Turns out I have a bit of a superpower after all. Took me long enough to figure that out, though. As a child, I figured it would be pretty damn obvious to me that I could do something that other people couldn’t, right? Well, it would be if I could fly or turn invisible. Those things are apparent, so to speak.

Instead, I find that I can hear all kinds of obnoxious noises that most people cannot hear. The hell of it is, it’s a lousy superpower. Read the rest of this entry »

Diabolical Dialogues

A big part of my frustrations with the social realm are the crazy bits that keep surfacing in dialogues, like rocks that keep surfacing from a nicely tilled field.

One of those crazy bits are the unstated, inferential messages with which neurotypical people fill their conversations. You ask a nice, straightforward question, and you get … ambiguity like a fog obscuring the field. You get hidden meanings to stub your toes upon.

The conversation is full of subtexts, like coded messages. But unlike real coded messages where “Grandma knitted me some socks,” really means “You’re in peril, leave the country immediately,” these subtexts are not codified. They do not have a specific meaning known to both parties. Instead the subtexts could be any number of meanings, and it’s up to the other party to guess what those true meanings might be and which one they might be! The subtexts don’t even remain consistent; the same phrase might be used to mean completely different things at different times.

I like cryptograms as an intellectual puzzle, but I don’t like them in everyday conversations like this one where I ask: Read the rest of this entry »

Lingering Around the Lingerie

SHOPPING. UGH. I hate shopping — once I find something that is comfy and fits, I stick with it. But you know, after a while the fave broken-in garments turn into broken-out garments, and it’s time to replace them. Plus, our 26th anniversary is coming around the corner, so I thought I’d see if there were any cute negligees.

I park my car and stride into the mall with that hyperalert / in a hurry walk, down to the same store where I have always bought bras. Omigawd, what am I thinking? It is Saturday in Suburbia and every freaking teenager, parent and small child, and ambling senior citizen is filling the hallways … I cannot even walk in a straight line! A cluster of tall guys strut down the hallway to imaginary rap music, holding up their over-large hip-hop pants. A giggle of black head-scarves suddenly breaks into a swarm of individual girls chattering at each other. A flotilla of perfumed saris wafts by. The mall is full of people-objects to avoid, too many smells, too much noise, too many things to visually sort out … and too big; it is a two-story American indoor shopping mall with no less than five major department stores.

Woah — where is the shop? It used to be here, on this corner. How can I totally lose an entire shop? Read the rest of this entry »

Operators Are Standing By

I heard a phrase the other month that summed up a lot of my operating abilities. I was listening to the Skeptic’s Guide to the Universe podcast #93, (from May 3rd, 2007). About 40 minutes into the show they had an interview with Bug Girl concerning Colony Collapse Disorder. One of the hosts (I believe it was Dr Steven Novella) summarized bee navigation abilities by stating, “They’re very precise, but they’re easily confused.”

Yeah, I get confused. The world is a confusing place, and bad design just makes it so much worse. I may at times be very precise in how I approach the things I need to do, but that doesn’t always help.

It’s not just me. Everyone has processing blips; some of us just have them a lot more often than others. But in any regard, this is why our tools, the machinery and electronics of our lives, needs to be better designed. Poor design just makes so much stress damn unnecessary! Crappy design takes a lot of things out of the realm of accessibility — people simply cannot use things, people cannot get to places, people cannot do the things they need to do.

When human beings cannot operate well (or at all) in human environments, it is not the fault of the people, it’s bad design. And bad design is just so damn unnecessary.

Possibly one of the most fabulous qualities of computers is not just that they can do so many different functions, that they can be configured to enable us in so many different ways, that they can aid in communication, but because Read the rest of this entry »

WAN-Foraging Behaviour of Migrant Geek Populations

You may have seen people wandering around railstations or airports or other public areas with open laptops in hand, searching for wireless signal to access the internet. I always thought that would be a neat demographic study to do.

Right now I’m one of them; “teh internets is broke” at home, and yesterday the cable service company told us they wouldn’t be out to fix it for another 48 hours or so.  No small surprise, considering that the US ranks 11th for internet penetration — it’s hardly an efficient or consistent utility, being composed of numerous companies, all with their own combinations of grids, pricing schemes and services.  So why do we have no access at home?  I’ve no idea; we’re not suffering from any severe geo-meteorlogical events, and I’m not way out in the boonies (the hinterland, the bush, the back country).

So here I am using free time on a college terminal, because despite their LAN sending out good signal, I cannot rouse their router’s attention anywhere on campus.  No, it’s not my laptop, which has worked with the college’s systems before, and worked just fine at the public library last night — however, I’m not fond of the public library because their wireless is glacially slow.  The result of all this is not having my laptop files for making blog posts.

Except of course, whatever just spontaneously comes to mind from a public-access keyboard, as I sit here kvetching.  Gah.

Bleh

Getting into the hot, humid season over here (30° – 40°C / 86° – 104°F). Always seems like the sweltering weather hits us way too soon in the summer! But no, it’s nearly solstice, so here we go, irrevocably dragged through that long, sticky stretch of subtropical obnoxiousness until late September.

It’s just too damn stultifying and oppressive, but attacked by this overly-radiant nearby star, we’re more unstrung and agitated than we are strung out and somnolent. The muggy, sun-blasted season doesn’t inspire any enthusiasm in me for Read the rest of this entry »

Greed Speaks: Fundraising for Nonprofits, Megachurch-Style

While reading Ginger’s rundown of the Autism Speaks annual IRS (US federal tax) Form 990, it occurred to me that this organisation conducts its financial operations in many of the same ways as do some of the less-savoury megachurches. (I’m not against religion in general or any particular religion, but recognise that churches are run by humans with typically human failings, and that big-scale churches and big egos can result in big-scale failings.) That probably seems like a really odd analogy, but there are a number of parallels, all of which are disquieting. (As another parallel, in the US both churches and nonprofit organisations are exempt from paying federal income taxes.)

Here’s the pathological model of the megachurch fundraising style: Read the rest of this entry »

What I Learned From the Bugs: Alienation and Othering

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

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

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

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

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

Less Is More

This is the fourth day in a row I’ve awoken without a cracking TMJ headache, thanks to getting a new bite-block to replace the other one lost.  Sure my joints ache a little and my ears ring more often than not, but I’m not spending hours a day in borderline dizzying-nauseus pain, whee!  Curiously, although more stress means more ticcing, less pain doesn’t necessarily mean less ticcing.  Less pain does means sleeping better, which is a nice sort of positive feedback loop.

Auditioning for Parts

I’ve not been posting much lately because I’ve been working on an involved application for a teaching job, and doing my other teaching-type jobs. (My goal is to have one job, not three.)

Anyway, here’s this lovely piece from the news: some girls presented sections of The Vagina Monologues, but the school officials decided that although they could present this play, they weren’t allowed to actually say the word,

vagina.

Yeah, riddle me that one, Batman. It’s a part of the body, like gastrocnemius, only easier to spell. (Your gastrocnemius is your calf muscle.) Anyway, the girls went ahead and said the word, because trying to get through The Vagina Monologues without saying the V-word is well, silly, and is kind of like getting through Inherit the Wind without saying “evolution”. (Uh-oh, maybe I shouldn’t have suggested that!) As a result, the girls got suspended for insubordination.

Personally, I’d say it was worth it.

 

I can’t wait until I get to teach Biology. “Okay everyone, let’s practice these vocabulary words. Repeat after me. Epididymus.”
“EPIDIDIDIDYMUS.”
“E-pi-di-dy-mus.”
“EIPDIDYMUS.”

“Fallopian tube.”
“FALLOPIANTUBE.”

“Ova.”
“OVA.”

“Ovary.”
“OVARY.”

“Scrotum.”
“SCROTUM.” (titters)

“Sperm.”
“SPERM.”

“Testes.”
“TESTES.”

“Vas deferens.”
“VAST DIFFERENCE.”
“Vasss de-fer-ens.”
“VASDEFERENZZ.”

“Vagina.”
… We’ll never get out of there alive.

Just So Special

I had a half-hour long drive home. There’s a word stuck in my head, which I end up exorcising in the best way I know how, by repeating it. (Sometimes they call doing that “palilalia”. I call it simply getting stuck on a word.) Special. Special. Special. Special. Special. Special. Special. Special. Special. Special. Special. Special. Ssssspessshullll.

Maybe you know why it’s gotten stuck in my head, because you’ve heard it used in that horribly obnoxious way: “He’s special.”

What a stupid word. Well, a perfectly ordinary word used in stupid ways.

Special: something distinct, individual, unique, peculiar, distinguished, unusual, exceptional, extraordinary, or especially valued.

In its honest, original meaning, the word lends positive weight. And then it got horribly warped and weighted down with social baggage. (Albeit, not quite as badly as words such as “faggot”, which used to refer to a bundle of sticks for kindling.) But just use it in (ahem) special wordings, and you get a variety of negative visceral responses.

A special school for special children. Comes off variably snooty, smarmy, or condescending – what, the rest of the children aren’t special in their own ways? ::bleh::

My child has special needs.
Generates pity: “I’m so sorry to hear that.” May generate distrust or denial: “What’s so ‘special’ about your child? How come they get something extra?” May generate resentment: “Why does Mommy think she’s special and not me?”

Special education. A phrase so heavily loaded with a myriad of issues that it generates sighs in parents, educators, school administrators and educational psychologists everywhere. People fight to get special education, fix special education, or even to get out of special education. “Special” education was created because regular (or “normal”) education isn’t flexible enough to deal with the fact that students are not interchangeable units. At its worst special education meant segregation from one’s school peers, with reduced expectations and educational opportunities.

Oh, how the word special can be seriously weighted down with derision: “Isn’t that just so special?”

During my drive home, I remembered a classic joke, one that ranks highly on sarcasm points: “Remember, you’re special, just like everyone else.” The sarcasm comes from the acknowledgement that the phrase “you’re special” is derived from the total deformation of the meaning of the word. There’s really nothing “special” about having different abilities and different needs than everyone else, because everyone does in some manner or another. The perfectly average person is actually profoundly rare, because everyone is un-average in at least one way. So why is a child “special”, or why are their needs “special”, or why does education have to be “special”?

“Oh how special!”
I hate hearing this. If everything you do is fabulous, then it doesn’t matter what you do, because you’ll get the same hollow praise and the same insincere responses. Hey, I’m not looking to be better than other people per se, but I am looking to be recognized for my particular efforts and my accomplishments.

I’ve heard it used in a variety of situations, and in a number of rôles in my life. After hearing it used by random adults throughout primary school, I began to cringe. I had no idea who most of those adults were – they weren’t my teachers, but were usually other associated staff members and parent volunteers (“room mothers” back when it was assumed that mothers stayed at home and were idle). After-school events (dare I say it? special events) such as ice cream socials or once-a-month films or anything so random as a meeting for the student library volunteers, seemed to attract such adults who then generated these kinds of comments.

The well-intended adults wanted to praise and encourage the children around them, and also wanted to keep them docile and occupied, possibly even entertained. So we as hapless victims ended up with stupid crafts using paper plates, felt or tongue depressors, crafts that no one wanted to do past the age of eight. Little kids would do the crafts because they just liked to mess around with the materials. But generally older kids would only do them to be compliant.

The problem with such special “arts and crafts” was that they were not very functional – we couldn’t learn any new real-world skills, and nothing useful to be made. What is anyone going to do with a “book mark” made from beads glued on a strip of felt? You can’t really use it because the glue won’t hold the beads, and even if you did, the beads were so lumpy they would damage the book. What is the point of a “place mat” made from construction paper and poster paint that will dissolve and then stain anything slightly damp? It really wasn’t a “special treat” to be told to cut out this shape from this color and glue to it this spot, and yet also be “creative” while doing so.

Even after I became an adult, I still hear people issuing bizarre commands and praises to the children and young adults (!) in their care, utterances like “Give me blue” or “Nice hands”. (Please folks, if you want children to learn to speak correctly, then you need to model good grammar.)

I can hardly explain just how much that squeaky, patronising, coo gets me riled up. It’s not just the tone of voice, or the phrasing, or the activities. It’s the adults’ insistence of the children’s slavish obedience to time-filling but personally-unfulfilling special activities. A few times it’s been all I can do not to upturn the tables of worksheets and ugly crayon stubs, and stomp out of there in frustration. I’ve seen this kind of behaviour in gradeschool classes, Sunday School classes, scout troops, after-school enrichment programs, summer camps and other places.

It doesn’t help to explain that no-one wanted to do the arts & crafts last time, and that probably no one will want to do the similar arts & crafts next time. Telling the children that it is a “special” project and that their finished products are also so “special” is not going to generate enthusiasm. If they committee members think the result is cute, they assume the children will think it’s cute and their parents will also think it’s cute. The worst part is that scores of people (usually women) seem to find doing this to the “precious children” to be just so wonderful and happy and helpful! They sit around having little hen-parties about how to come up with more saccharine phrases and more inane, time-wasting cutesy projects.

I do my best to avoid such situations. I’m not “aloof”, I’m horrified.

“Isn’t that special!”

If only.

Whining From Another Hysterical Female

Don’t get me wrong — I’ve actually had good results with most of the professionals whom I have seen. It would be rather a fallacy to broadwash a whole bunch of specialists on account of a few fools. But boy, when you run into an fool, it’s usually a doozy!

It’s been a long few years getting various difficulties sorted out and identified. Over a year ago I saw someone who was touted at being an expert on learning disabilities, to investigate ongoing scholastic difficulties and possible auditory processing difficulties.

Well, I saw Dr S. (a PhD, not physician) when I was otherwise free from the bulk of my work and school activities, as at the time I’d been having a number of health problems, including insomnia, migraines, worse tics and stuttering, hyperacusis & tinnitus et cetera.

I brought in with me documentation including previous test results, transcripts, and descriptions of my difficulties. This was because I can often get tangled up and forget stuff when trying to explain things, especially to doctors. (Hey, I’m an organism capable of learning — over time I’ve realised that remembering stuff is a problem, so now I take in a list or hand over a page of notes. My new primary physician does great with this, because in the couple of minutes it takes her to read a few paragraphs, we can fast-forward through a lot of rote questions, without omissions.)

Dr S. had me fill out a couple of online tests, and then had someone else administer some more tests to me. Oddly, one of the tests he gave me was for ADHD, for which a coöperating team of a psychologist and psychiatrist had already evaluated me. In fact, he said I had no ADHD and no real problems, except a little figure-ground discrimination hearing things in noisy environments. He had no recommendations, except that I needed to see a psychiatrist for psychosomative disorder.

Well, hell. Was I bordering on depression? Yes, and I knew that and was working actively against that — half a year of chronic sleep-deprivation and pain will do that to a person. Was I having difficulties with my husband? Yes, my health problems were requiring me to take a semester off school and work, and he was wanting to know “when I was going to be a productive member of society”. I already knew about these things, and had explained to Dr S. that I was working to deal with them. But that wasn’t why I was seeing Dr S. — I was trying to address learning and hearing comprehension problems. I even paid a few hundred dollars out of pocket for all that.

There’s a big problem here, and it’s not mine. Nor am I the only one with it.

The word “psychosomatic” has gotten warped or twisted. It literally acknowledges the interdependency and functionality of brain/mind and body, but now has come to mean that problems are “all in your head”, as in imaginary and/ or self-inflicted.

They used to call women “hysterical” and thought it due to having a uterus that “wandered around the body”. Holy cows. Obviously I’m not hysterical. (Hell, I don’t even have my uterus or ovaries any more, due to cysts and endometriosis.) So now they say that women who have problems have “psychosomative disorders”.

The issues with my husband were not seen as his difficulties in accepting my disabilities, but as evidence of my mental disorder.

The near-depression I was facing was not from months of chronic insomnia and pain, but rather caused by my mental illness.

The documentation I had brought with me to aid the man in his understanding of my problems was not data, but symptoms of my mental illness.

I was seen as “attention-seeking” rather than as solution-seeking.

Shit like that can drive a person nutz.

The good news from all that was that I got a referral to a CAPD specialist who said that Yes, I definitely do have such problems, and could even recommend some concrete ways of dealing with the problem and gave me documentation for such. But it makes me wonder, if Dr S. couldn’t really diagnose such, why did he put me through tests for APD, and tests I didn’t need for ADHD?

Has it ever occurred to clinicians that many of their clients don’t exhibit stress symptoms due to having psychosomative disorders, but rather than having various (unacknowledged) disabilities will make a person stressed?

It’s all ass-backwards. Shit like that can drive a person nutz.

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