AUTISTIC / ASPERGER'S CARTOON: Irony

Jokes-on-ceiling-fan
Cartoon of myself (a middle-aged white woman with short hair and glasses) inside a room.  I’m looking upwards with a raised eyebrow and puzzled expression.  The word IRONY has a pair of wings and swooshing lines where it flies over my head towards the ceiling fan.  The tops of the fan blades bear pile-ups of repeated, mixed words: IRONY, JOKE, and SATIRE.       My thought ballon reads, “Being autistic, sometimes irony goes right over over my head. I think it’s time to clean off the ceiling fan again.”

Companionably Autistic

It’s a different thing being around other autistics.
Well, doubtless I’ve been around other autistics before. But when we did not know we were, there was all that stress from passing (“pretending to be normal”), so generally weren’t aware of what our sensory and other needs actually were, much less how to comfortably, genuinely, be ourselves.
Now it’s different.
(1) A little morning talk over my cuppa tea. Then he says, “Well, that’s enough social interaction for a while.”
He returns to his computer work, and I chuckle as I go out the door.
IT’S LOVELY when constant conversation or chit-chat aren’t expected.
(2) Yesterday I took a day trip to London to meet a friend from the States.
We met at the train station, where (being faceblind) I texted him my location and held a page with his name so he could find me.
After he bought his sausage roll, I suggested eating on the less-crowded, quieter mezzanine level. Together again after a long absence, we sat talking about how much less stressful it was not being in the States: him not worrying about being shot at, and myself not being awoken by gunfire. Alas, we were unsuccessful at not talking about Trump and disability and healthcare and racial and social care and environmental and- and- and- US politics Bllaarrgg. (The actual convo didn’t have many paragraphs, or rather, not spoken aloud. But I flapped a little in frustration.)
Time to move on; we brushed off the inevitable puff-pastry crumbs. I geeked over riding trains and how different cities smelled, and he reminisced about subway announcements. We started to get on the first subway car but it was too claustro’, so we caught the next. En route to the British Museum, Waterstones bookstore sucked us in; he found books he was looking for. I checked out the wee toys, feeling more 5 than 55, more child than grandmother, as I checked out the shinies and tiny things and science toys.
We ambled to the Museum, pausing as needed for him to catch his breath or for my slow knees to ascend stairs. No need to apologise; no need to hurry.
Then finally at the Museum! Get maps and —
Have a cuppa tea and figure out what to see. This was not a Must See Everything tour; we both understood having to mete out our tolerances. Made a list. He suggested started and the fifth floor and working our way down — Excellent!
Oh boy. One lift out of service, and it took a bit of searching to find the other. And … the fifth floor Japan exhibit closed. Moving along … Third floor was fascinating. We took photos. SO crowded, so many languages going on, so many Auditory Processing Disorder blips for us to chat much.
By the time we got to the room with the Egyptian mummmies, it was a crush of noisy school children in addition to all the tourists. One couldn’t walk in a straight line, and hardly much take photos.
It was overstimulating. Too much noise and too much crowds and he needed a breather. Too many smell-shapes and flavoured colours and moving sounds and I needed to sit. We glanced at each other in instant agreement; he pointed towards an adjoining room and we wended our ways out. Sat and rested by the rune stones.
At the end I lost my pal in the vast space of the museum entrance and crowded plaza, so once again, I texted him my location and held a page with his name so he could find me. It being mid-afternoon, we did the sensible thing and regained our stamina with chips and ale in the pub across from the museum. Apparently 15:30 is a good time in a pub; there weren’t many there and we could hear each other speak. Recharging time: I rocked and he doodled.
That in turn meant that we were hungry for our evening meal at Café in the Crypt at St Martin-in-the-Fields during early evening. The food was hot and fresh, and we choose a table that felt secure near a pillar, instead of exposed from people surrounding our backs.
Back on the street after dinner, he announced, “I’m running low on spoons.” We stopped to rest at Trafalgar Square. Then my train was due in an hour, so parted we ways at the Northern Line.
IT’S LOVELY not having to justify eating at a particular table, or wanting to photograph the visual texture of fractured safety glass, or why subway announcements are so endearing. Or that one is getting overwhelmed and needs to rest and stim, or is running out of spoons.
Nor did it take us twenty minutes to say Good-bye; that was enough social interaction for a while.

A Reliable Read: Person-first language and oppositional models of disability

This post from Finn’s excellent blog, Standing in the Way of Control is an easily-accessible introduction to the uses and problems that can result with “person-first language”*.
Just an appetizer:

This oppositional attitude toward disability stems from the ableist idea that disability is something that happens to “normal” people—or that disabled people are altered able-bodied or neurotypical people—rather than a natural aspect of human existence. This applies particularly to those of us who have lifelong disabilities—we cannot envisage a life in which we were not disabled relative to the societies in which we grew up.

Now, go read “Person-first language and oppositional models of disability”! (-:
 

* “Person-first language” refers to the practice of saying, “person with ____”, meant to emphasizing the person rather than defining them by their condition(s). Good intentions run into the law of unintended consequences when ignoring how people define themselves by intrinsic qualities, e.g. “I am a Deaf”, “My autistic aunt”, “He’s bisexual”.

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.

More bloviating by discredited Dr Wakefield

Outbreaks of  fully-preventable diseases are increasing

As reported on Thursday, April 11th in the UK paper The Independent, Swansea measles outbreak: Confirmed cases rise to nearly 700″, which is worse than than last year’s outbreak in Merseyside, England.
Over 2,600 MMR vaccines were given last week, but are still insufficient to counteract the number of unvaccinated people, or those who lack the full number of necessary dosages. Public health officials explained that the outbreak will continue to grow. (This is what is meant by “herd immunity”: there needs to be a sufficient percentage of people who are immune to prevent the spread of infection.)
And as the article reminds us,

Before the introduction of the MMR jab in 1988, about half a million children caught measles each year in the UK. Approximately 100 of those died.

But for reasons I don’t understand, Andrew Wakefield (who apparently suffers from ‘Center of Attention Deficit Disorder’*), was not just mentioned as a historical reference, due to being a pivotal figure in the paranoia that led to the drastic drop in immunisations. The front page of The Independent’s online edition for Saturday, 13 April 2013, has in its top, featured article a large photograph of him, Struck off MMR scare doctor: Welsh measles outbreak proves I was right. What in the world for?!

Why the concern over Wakefield’s opinions being published, with a newspaper’s front-page lead?

Andrew Wakefield should not be a featured person of interest for opinions. He is no longer a licensed doctor in either the UK or the US. In 2011, Medscape designated him “Worst Physician of the Year” and in 2012, Time listed him in, “Great Science Frauds”.  There is also a good editorial in the same edition of The Independent“Andrew Wakefield’s baleful legacy”.
Wakefield’s unprofessional behavior as a researcher and false assertions that MMR vaccines can lead to autism (in a 1998 article in The Lancet, later withdrawn by the journal) are  a bunch of frass (insect dung). Plus, his ongoing media attention and involvement with what initially were fringe groups, inflated such ‘antivax’ sentiments to mainstream popularity.
Vaccination rates dropped drastically, from 92% to as low as 50% in some areas. Measles outbreaks began occurring across Britain, and in 2006 for the first time in 14 years, someone died of this preventable disease.
(Similar outbreaks happened in the US as well, including mumps. In 2006 got an MMR vaccine then because I had never had mumps, nor been vaccinated for it. Even if I had, the old killed-virus mumps vaccine used when I was a child was found to be ineffective.)
Included in The Independent’s series of articles is the useful, “Timeline: How the MMR scare story spread”  by Jeremy Laurance.

The feature article: the good, the bad, and the problematic

The front-page feature by Jeremy Laurance is titled, “Struck off MMR scare doctor: Welsh measles outbreak proves I was right”. Which of course, is not true; Wakefield is just bloviating again**. As the front-page subhead reads, “Experts condemn discredited doctor’s outburst pinning the blame for the outbreak of measles in Wales on the Government as cases in the Swansea area rises”.
The linked article posted in the Health News section has a different title, “MMR scare doctor Andrew Wakefield breaks his silence: Measles outbreak in Wales proves I was right” (subhead: “As measles cases rise, experts condemn Wakefield’s outburst”), which begins with with six paragraphs of current events, then describes Wakefield’s assertions in the next eight paragraphs.
BUT, the factual counterpoints to the nonsense, clearly stated by, Adam Finn, paediatrics professor at University of Bristol, and childhood vaccines expert, are not given until afterwords, in the next nine paragraphs of the article.
Unfortunately, not everyone is going to read that far, nor stop to digest the complete refutation of all the idiocy that Wakefield said.
I think Finn’s factual material would have been more useful if presented earlier, such as a point-by-point dismissal of nonsense, e.g. ‘Wakefield claims … but Professor Flinn refutes …’
Alas, perhaps due to following the common news formula of, So-where’s-he-working-now, included this last paragraph, which unfortunately lends him what some might perceive as professional credibility:

“Dr Wakefield moved to Texas, US, in 2001 where he is director of Medical Interventions for Autism and in January was promoting a reality TV series on autism.”

Remember, Andrew Wakefield uses the title “Doctor” because he earned a degree in medicine; he is not licensed to practice medicine in either the UK or the US.
As I said, Wakefield should remain a historical warning, rather than a featured person of interest for opinions. Adding on the reasons why his comments are harmful nonsense at the end of an article are not enough to detract from the fact that all this frass is featured for free!
_____
* I didn’t make up the (fictional) COADD — ‘Center of Attention Deficit Disorder’, but I sure see a lot of it in our problem students (as opposed to the students with problems, who generally want to avoid being in class).
** Bloviating: a lesser-known, but useful addition to one’s vocabulary: to speak boastingly, pompously, aimlessly; as the OED says, “talk at length, especially in an inflated or empty way”

Reasoning for a good cause

“Same thing,” she said, waving off the comment and walking off toward the time-clock to punch out.
“But– no, it’s not …” I protested, and then stopped talking as I saw her leaving not only the the doorway where I stood, but our conversation as well.
If you could call it a conversation; I’ve had longer dialogs with fellow elevator riders.
It was hard to stop my rebuttal. I so wanted to explain, and having to force myself to stop in mid-sentence (hell, mid-mini-monologue) is hardly my style. But I diligently keep practicing social skills, including noticing when others have quit a topic.
Having already clocked out, I gave up, left the building, and even waited to get into my car before expressing my complaints aloud to no one — except a fruit fly uselessly orbiting the fragrant-but-empty lunch bag I had just tossed onto the floor.
And a fruit fly doesn’t give a gnat’s ass about the seemingly subtle difference between reason and cause. No, it is not mere semantics, and they are not exact synonyms.
“So how was your trip?” she had asked as we met in the hallway. We had not yet crossed paths that day, delaying the obligatory Monday morning chit-chat.
“Oh it was lovely, except for missing a connecting flight, so I was only there two days,” I began. And I was proud that I had even mindfully planned ahead to next ask her if she’d ever been to Boston, thus fulfilling my offering volley in the chit-chat process — when she gave me that totally unexpected, inexplicable response:
“Well you know, ‘Everything happens for a Reason’ !” She chirped, nodding sagely.
“You mean a cause,” I began.
“Same thing,” she said, waving off the comment and walking off toward the time-clock to punch out.
“But– no, it’s not …” I protested.* Continue reading Reasoning for a good cause

I meant to get around to this earlier…

Displacement behaviour: when suddenly you feel the need to shift a negative emotion or stressor to doing something else. Right now, that means sorting tax papers instead of finishing a class handout or sending out a query letter. (During Finals Week, my displacement behaviour was cleaning the bathrooms. My apartment was REALLY CLEAN after Finals Week.)
One rationalisation I have at the moment is that I am correcting for last year’s “planning fallacy” — organising and tracking down information and figuring out the electronic filing of my federal and state taxes took me longer than I had anticipated. (Folks with ADHD are terrible about planning fallacies, because of the weird fluidity of perceived time.)
Ooh, I just found some neat links on new research into the causes and coping strategies for procrastination … *
STOP!  
That’s just a rationalisation. Set aside those tax papers for this weekend, and get back to the correspondence. Damn. And, *sigh*.
Meanwhile, here are some of my mottos that you may like:

Fidget quietly.

Pile by file**.

Perseverate positively.

Obsess functionally.

_____________
* Go to the Wikipedia page on Procrastination; they’re at the bottom. Sorry; I can’t be an accomplice to all of us wasting too much time…
** Which of course, later turns into File by Pile. But if your piles are already rough-sorted, then they don’t need much more than sifting out unnecessary junk (credit card offers and candy wrappers and expired sticky-notes), and maybe some date-sorting.
I prefer the OHIO method for when I get the mail: Only Handle It Once. From the moment it goes from the mailbox to my hand, I don’t dare set it down until I have binned the junk, set the catalogs and magazines in the appropriate reading zone (e.g. the bathroom), and push-pinned the bills to my bulletin board with the due dates highlighted. Otherwise, if I put the stuff down, it gets lost and forgotten in the dèbris of my desk!

Stupid Irony!

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

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

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

What you want

I still feel queasy when I remember the words.
Children have a certain disempowerment simply because they are young — they are naïve, less learned, and lack perspective. But this transcended childhood.  It sank past the boundaries of adult to child, or parent to child, and trampled my self-identity and self-determination.
My mom had found a way to get past what some would have called the “fortress” that isolated me, that natural preoccupation with whatever I was doing and naïve self-centeredness, that self-ism or autism that was greater in me than most anyone else.
“Oh, you don’t want to get grilled cheese again!” she chided me, but her sharp glance to me denied the lightness in her tone.  Her expression would then change, as it so often did when she spoke to other adults, with the swiftness of flipping a social light-switch, and she turned to pleasantly address the waitress “She wants the ham sandwich.”
Or: “You don’t either, have a headache.  You’re just fine.  Now go get your work done.”
And in 9th grade, in a dizzying double-bind: “You don’t want to be a park ranger; quit flapping that survey!  You’re going to sign up for bookkeeping and typing, and you’re going to start getting good grades in math class, too.”
Increasingly, I was told how I “really” felt emotionally or physically, or told me that I could not possibly be feeling something, that indeed I actually was feeling.  Invalidation is when an emotionally abusive person distorts someone’s perception of the world, or when the abuser undermines their factual processing by casting doubt upon the facts of the events.  Denying what happened or the analysis of what happened, minimizing the importance of abusive statements or trivializing the recipient’s responses are also means of invalidation.
Over the years, my inertia increased.   I could never tell when I was expected to have a preference, or rather, to just to express a preference, since apparently I wasn’t really allowed to have them.  When it wasn’t convenient to others for me to express a preference (to speed up shopping, or to allow my mom to appear generous), I was soundly rebuked and told what I “really wanted”.
My stress and depression increased throughout my teen years.  When I should have been learning independence and skills and decision-making, I was thwarted, and then paradoxically, received further insults because of my lack of independence.  Never knowing when I was supposed to express an opinion, or what my opinion was “supposed” to be, I frequently gave up and just shrugged, unable to verbally express the “appropriate response”. I frequently did not know what that “appropriate response” was.
Worse, with my lack of being able to perceive all those subtle social cues that pervaded both my warped home environment, and even the subtle social cues that comprise such an overwhelming part of interactions in the “normal” world, I was becoming increasingly fatigued with the burden of shamefully lacking in whatever psychic means would have informed me.  It was of course, all my fault, as so many people were quickly willing to inform me.
My mom had found a way to get past my natural self-centeredness, not by inviting me to understand others’ worlds, but by trampling my personal boundaries of selfhood.  Although children have a certain disempowerment simply because they are young, they, like all self-conscious organisms, are entitled to — nay, required — that their selfhood be respected.  Denying that someone else might have opinions worth considering, much less that they are even allowed to even have opinions, violates that central inalienable right.

~#~

Years later as an adult, I was still running into much the same problem of “reality shifting” (being told by others what my personal reality and preferences were “supposed” to be), even if it wasn’t expressed as blatantly or as frequently.  One such event became (in retrospect) a tipping point — not in events, but in perceptual clarity.  I finally realized that such events were equally disrespectful, even if they lacked the overt denial and double-binds.
My (now ex-) husband was telling me that I shouldn’t want to do jury duty because it might interfere with my vacation schedule or my work schedule.  I shouldn’t want to do jury duty because it didn’t pay as much as my job did.
But I realised in confusion, that this wasn’t about what I wanted to do, to participate as a citizen, to help make a positive difference in justice, and to be able to observe another facet of social functioning.
Ostensibly, it was about what he wanted from me, in terms of convenience in the family schedule, and what he wanted from me in terms of my earnings. (Unbeknownst to me at the time, we were horribly, deeply in debt.)  I wasn’t denying that it could make these differences in scheduling and earnings — but really, that wasn’t the issue here.  Those “reasons” were just distractors.
Rather, he was trying to enforce my actions based upon his wants, and dismissing my wants as being unimportant.  He was trying to convince me that his wants were my wants.  We all have wants, but I didn’t think that mine should have been dismissed as being unimportant.
The solutions he proposed were ones compromises between the requirements of the law, and what he said I wanted.  But effectively, I was the one being compromised, because his announcement denied my interests and enabled him to get what he wanted, rather than what would have enabled both of us.
I got tired of being told what I should want. I got tired of being told how I should feel.  I was suffering from a chronic case of spiritual fatigue. Constantly negotiating to be taken seriously was an exhausting way to live.
I don’t miss those aspects of my life; my whole system twitches when I perceive someone telling me what I “should be feeling” or “really want to do”.
Now if only I could get out of some of these other double binds that infest my work life …