What if?

What if you were told that the way you experience the world is wrong? What if you were told your body lies? What if everything you felt and experienced was challenged, tested, doubted, disbelieved?

What if they told you the way you move is wrong? What if your body language and movement was monitored, policed, and controlled whenever you were around people? What if other people saw you slip up and laughed and made fun of you for it? What if they told you that you were a freak and freaks should die? What if they urged you to kill yourself? What if they hurt you? What if authority figures insisted this treatment was your fault and if you tried harder at moving right it wouldn’t happen?

What if they told you the way you talk and think and write is wrong? What if they dictated and micromanaged to you how you would say things, and demanded that you comply before they’d give you what you want? What if they did that even involving things you need? And what if, despite saying that compliance with their standards is the way to get what you want, they routinely ignored you if you were asking them to stop?

What if talking about this treatment was met with disbelief? What if people accused you of misunderstanding your own experiences when they weren’t there? What if they called you a liar? What if they said you had to be exaggerating, it couldn’t possibly be that bad?

What if you could never say no? What if any resistance at all was met with physical force, someone grabbing your arms hard enough to hurt and forcing you to do what they wanted? What if this was not called “assault,” but “therapy”?

What if parents who hurt kids like you were treated as the victims? What if the kids were blamed for their abuse because they move and talk and act like you and therefore deserved it? What if the media focused all stories on filicide of kids like you about how hard you are to take care of? What if parents of kids like you talked ominously about how there would be more deaths if access to services didn’t improve? What if protesting the idea that it’s okay to kill people like you was seen as unreasonable?

What if, in spite of all this violence against people like you, it was you who were scape-goated whenever violence was talked about. What if the moment a major violent act hit the news, people were speculating that the perpetrator must have been like you? What if, when you expressed hurt at this, people called you the one who lacks empathy?

What if you were told you had to do things that hurt you, because refusal is a “behavior” and behaviors are bad? What if people willfully and capriciously denied you the ability to comfort yourself as they forced you to do things that hurt, day in, day out, and then blamed you for the explosion when you couldn’t take it anymore?

What if people consistently made you do things you’re terrible at without any guidance? What if they berated you and called you names when you inevitably failed? What if they refused to let you work on anything you enjoyed or were good at until you succeeded at the thing that made you miserable? What if protest was met with insinuation that you were lazy and spoiled?

What if anybody who doesn’t move or talk or act like you was seen as better? What if there were entire organizations and research groups and societies dedicating to making you move and talk and act differently?

What if there was an organization whose sole purpose was to eliminate people like you? What if they pretended to be about helping you, and were the main group people thought of when they thought of authorities on people like you? What if this organization completely excluded people like you from positions of power and did its best to erase and discredit the words of people like you who challenged it? What if this organization trumpeted the “therapy” that you found so hurtful as the only thing that could fix people like you? What if, when you told this organization to stuff its eugenic “help,” it acted as if you were in the wrong and it was the victim?

What if people in the organization talked on video about their fantasies of killing people like you, and insisted that everyone in families like yours thought about it sometimes? What if this organization spread words of hatred and dehumanization about people like you? What if others acted on it and hurt and killed people like you? And what if the organization steadfastly refused to tone down its rhetoric, in spite of the perpetrators of these acts being close followers of it?

What if, even after all that, people thought you were the unreasonable one for protesting?

A follow-up to my previous post:

Please, read this post. If you are planning or thinking about hurting someone in your care, call for help. Go to a hospital. Go to a drop-in respite center if your city has one. Do something to keep that person safe. You are not a bad person if you need and seek help.

You are not a bad person if you admit you can’t handle something alone.

You are not a bad person for having a breakdown.

Hurting a defenseless person who depends on you? That, IMO, is what makes people who kill their kids bad people.

If you know of other resources that are good alternatives to killing or hurting someone or links to bystander resources for how to intervene, post them in the comments. I’m talking anything from CPS hotlines to emergency drop-in center locations, from red flags to how to report. Anything useful.

Don’t kill your kid. Get help instead.

Another child

TRIGGER WARNING: This post discusses the prolicide of an Autistic child in frank detail and links to news stories covering both this case and others. The stories, as many dealing with this subject are prone to do, contain ample toxic ableism which this post dissects. The remainder of the post has been put behind a tag to protect people from accidental triggering. Proceed with caution.

Continue reading

The Case Against Stupid

TW: Discussion of ableist language & bullying

 

 

 

 

“You’re S-T-U-P-E-D. Know what that means?”

“Stuped? It’s not a word.”

“Yes, it is! Stupid, do you know what it means?”

“That’s not how you spell ‘stupid’. It’s with an i, not an e.”

“It means you’re r******d.”

Stupid first entered the English language as a word back in the early 1540s. According to current current usage and definitions, its most common usage has to do with describing a lack of ordinary “quickness or keenness of mind” and describing things characterized or proceeding from “mental dullness”.

In other words, it is a word that exists to belittle those based upon their perceived mental acuity. If you doubt this statement, look only to its accepted list of synonyms, which includes such words as “dull,” “dumb,” “unintelligent,” “dim,” “doltish,” “half-witted,” “idiotic,” and “moronic”, all of which are words with well-defined ableist history (several of which were once ableist medical terms). This belittlement of perceived mental acuity is harmful to those with cognitive and developmental disabilities – we who, due to those disabilities, are often perceived as having lower mental acuity than our peers.

So, we’ve established that it has an ableist definition. Now I’m going to talk about my case that it constitutes a euphemism for one of the most vile ableist slurs out there. The first part of my case is to look at the synonyms of that slur. It includes many of the same words as the list of synonyms for stupid, and even includes the word stupid itself. If you look at the definition, a common slang use is as a synonym for stupid or foolish – this is the ableist slur usage we’re so familiar with.

In other words, even dictionaries, which are notoriously slow to accept changes in language usage, recognize that stupid is synonymous with that slur. Dictionaries exist to document current language usage patterns, not to stay on top of slang fads. Hence, for something to be placed in a dictionary as an accepted definition, it must be both 1, common usage (technical definitions almost never make it into general English dictionaries) and 2, old enough for the dictionaries to recognize it’s not a one-year fad like the neologism “ruly” was in my childhood.

On the more personal side of this argument: That’s exactly how it was used against me. The exchange I wrote at the start of this post actually happened to me, and I learned very quickly that the other kids couldn’t get away with calling me a r*****d in public, but they could get away with calling me stupid. So they used stupid as a euphemism for r*******d, probably just like their parents told them to.

But, you see, kids possess less ability for self-deception than adults. So they didn’t try to rationalize that they were just going around the social condemnation of the use of the word retard by saying that wasn’t really what they were doing, they were actually just saying it was a bad idea or I was annoying or made no sense or what have you. They said it like it was: When they said stupid, they meant r*******d.

As people get older and they learn the why of why retard is so very offensive, many of them don’t want to give up other ableist insults while they’re at it. After all, how can they express ableist sentiments without ableist words? So they rationalize. Stupid doesn’t mean r*******d, it just means dull-witted and dumb, amirite? Some get angry: How dare you tell me that stupid is a euphemism for retard! That’s offensive! I don’t use it to mean r******d, I use it to mean [insert other ableist word here]!

But the kids are more honest. They say it like it is.

That means you’re r******d!”

Figuring out my difference

TW: some discussion of self-injury

I remember the day I figured out I was different.

Up until that day, I’d known things happened to me that didn’t seem to happen to other kids. I knew, for example, that the teachers were harder on me than on other kids. I knew that no other kid in my class still had “temper tantrums” at ten. I knew that other kids didn’t get called “retarded” unless they had an aide or had to skip class for extra help. I knew that other kids didn’t have the kind of dangerous rages I did. I knew that other kids didn’t trip over their own feet in gym class, that they didn’t get beaten up or teased as much as me, and I knew that other kids didn’t like me much.

I knew other kids didn’t bite their cheeks bloody to keep from screaming when the room was too loud (I knew that because of the look of mingled alarm and disgust my sister gave me when I mentioned that class was too loud so I bit my cheek and would probably get a canker sore – that look, like the look of mingled mockery and disgust, is one that a bullied kid learns to recognize quickly. That’s a look that tells you to shut up because while that person won’t turn it into ammo, if it gets out, someone else will). I knew other kids didn’t have to clasp their hands so hard their bones creaked to keep from smashing their fists into their head when the sun was too bright. I knew other kids didn’t gnaw on their hands when they were trying to concentrate in a noisy room. I knew other kids didn’t beat themselves bruised in an effort to avoid beating someone else bloody. I knew other kids didn’t burst into tears for things universally derided as “little things” by the adults around them. I knew other kids weren’t “over-sensitive.” I knew that, when trying to resist the tears, other kids didn’t pinch themselves hard enough to break skin or pick their skin bloody or pull their hair out, and by then I knew enough to make sure to ask to go to the bathroom before I did it, lest I end up having other kids make fun of me for it or, worse, have an adult see me and start screaming.

I knew other kids seemed to actually enjoy each others’ company. And that they seemed to make sense to each other. I knew that they didn’t make sense to me. I knew that my parents would call me a liar if I said noise was making my ears hurt or light hurt my eyes or my tags itched. I knew to stitch the hem of shirts I’d pulled the tag out of shut enough that my parents wouldn’t notice that I’d destroyed it – because if they knew I destroyed the hem (with my teeth, since they wouldn’t let me have a seam ripper because I’d wreck my clothes with it…), they’d call me stuff like disgusting and weird and stupid in their frustration. I knew that my sister didn’t mind tags like I did.

I knew that I had to be careful where and when I started to read, because adults wouldn’t believe me when I said that I didn’t hear them. I knew that I was far more picky than my peers about how things must be done (… they must be done right because if they’re not done right, it’s worse than not doing it at all). I knew that adults got annoyed with me and how I could pull an all-nighter without intending to.

But I didn’t add it all together, until one day at recess.

I was hiding in a little hidey-hole under the porch of the school (crouching, to avoid getting mud on my pants, with a book, of course), and something caught my attention as I was about to start reading. At that point, I realized I was the only kid on the playground who was alone. For some reason, that realization was catalyst to a thought process, where I added everything I’d noticed over a decade of life and how I was always called weird and so on… and realized I was different.

I’m not like them. I’m different. They’re right. I’m weird.

It would be two years before I came across the word for that feeling, alienation. Four years before I realized that alienation was actually what I was feeling. Five years before I first came across the word autism, and first considered I was autistic. It would be fifteen years before I claimed the term for myself.

But that day was when I realized what I’d spend the next fifteen years trying to find a name for.

When will people learn bullying is serious?

Trigger Warning: Bullying, suicide

I haven’t been posting much lately as I’m pretty swamped. But I couldn’t let this story pass me by, because I could have been this girl.

Another kid bullied to death.

This one hits close to home because, like her, I begged my parents – literally begged – them not to send me back. And they sent me back. She’s dead. I’m not.

I’d be lying if I said it doesn’t shake me. There were so many times I could have been her. So many. Why did I make it when this girl didn’t?

She’s dead now. Like Rehtaeh Parsons. Like Amanda Todd. Like Mitchell Wilson. Like Jenna Bowers-Bryanton. Like Rebecca Sedwick and Audrie Pott.

How many more kids have to die before adults wake up and realize this is abuse?! How many more have to die before schools start doing more than just making nice words about no tolerance and then punishing the victim into silence? How many more before police quit writing it off as kid stuff?

Why “labels are harmful” is harmful

Trigger warning: Discussion of teacher abuse of a student, meltdowns, and the consequences of growing up with undiagnosed disabilities

Okay, so there is going to be a lot of personal history in this post. I present myself as a case study of why the idea of labels being harmful is both harmful to kids with disabilities and harmful to adults with disabilities. Since, by necessity, I’m discussing me in this post, it’s going to be a lot of anecdata, but I might follow it up with some studies later on to back up what I’m saying because I’ve lost count of the disabled people and disability services professionals who’ve told me analogous stories to mine. I know I’m not an isolated or unusual case here.

I’ve posted elsewhere about why labels are harmful is bullshit, a post I will probably recycle at some point for a post here. Today I want to argue that the labels are harmful bullshit is actually actively harmful.

My family moved around a lot when I was a kid. By the time I was 10, I’d lived in 3 countries, 5 Canadian provinces, and in 8 different cities. One such move came when I was around 6. At my new school, I didn’t make much friends. I was lucky to be placed in a pilot program the school was running of semi-personalized curricula for each student, so I could learn at my own pace in everything. I devoured the coursework and blasted past the grade requirements for some subjects in under a month (math, English, science), while in others (handwriting and phys ed, naturellement), I was below grade level. Still others, I was about on par with my grade peers (History, mostly). I was never bored, was the teacher’s pet, and thrived.

My parents were disturbed by my lack of friends.Since I had access to the school library (books!), I spent my recess and lunch hour reading, and I’d bring two or three books home after school, and return them to the library, finished, the next day. My vocabulary exploded, and other kids started to complain that I talked “like a book.” When offered the chance to go play with other kids, I’d shrug and say, “I want to read.” and then go to my room and read.

My parents took me to a child psychologist. Their previously over-friendly (no concept of boundaries), extremely active (hyperactive) child had suddenly transformed into a bookish, mostly-sedentary recluse. The toy cars she’d previously been obsessed with stayed forgotten in the closet in favor of books that she blasted through almost unbelievably fast. This was a Problem. Given the recent move, they guessed I might be depressed and took me to a child psychologist.

Meanwhile, my teacher had also noticed my lack of interest in other students. He noticed I was cheerful when I got to spend time doing what I liked (books!) and that you could bribe me to tolerate even my most hated subjects so long as there was a book in it for me when I was done. He heard me info-dump to other kids and realized that a lot of my conversation was me repeating lines that I’d read in books, trying and failing at seeming clever by clumsily repeating witticisms that had worked well for characters I liked with no regard to the context they were said in.

My teacher, I’m almost certain, had an autistic kid. He saw the similarities between me and his son and broached the subject with my parents. I wasn’t having too much trouble at school yet – even though I didn’t have any friends and the other kids thought I was a very strange kid indeed, with my books and my stutter and my lack of concern for manners or eye contact – but, he worried, it was only a matter of time before different meant bullied, and he knew that the school could better protect me if I was diagnosed. He told my parents this, while I sorted the books in the back of the classroom by reading level, subject, author (alphabetically) and title (also alphabetically). I imagine they all thought I wasn’t listening. He did not use the words “autism” or “Asperger’s”, but rather “difficulty socializing,” “too attached to routines,” “fidgety,” and “different,” cushioned by “smart,” “enthusiastic,” and “pleasant.” He suggested my parents see a developmental psychologist, who’d helped his son with similar issues.

My parents figured that since I was already seeing a psychologist, they could just ask that psychologist what she thought. Problem: This psychologist did not specialize in developmental disabilities. She told my parents that I was not depressed (correct), that I was introverted (correct), and that they and I would both be made miserable by trying to change my natural disposition (correct). As for the problems socializing and fidgetyness, I was probably shy and nervous, since the only disorders that cause that were Autism and ADHD, and only boys get those. Plus, she told my parents, labels are harmful because they limit the kids they’re placed on. She told my parents I didn’t need special education or extra help, I needed a gifted and talented program (as if the two are mutually exclusive), and that if I wasn’t in one, my boredom would lead me to act out and cause behavior issues at school. She encouraged my parents not to get me “labelled,” saying that it would be a shame to see a bright girl like me limited in such a way.

Things were fine until we moved again. Third grade, new school. This school had no gifted and talented program. I went from doing pre-calculus to arithmetic, and was faced with similarly shocking level changes in all of my subjects. Handwriting was the worst: rather than having a teacher who would accept that I couldn’t write quickly and give me extra time, my new teacher not only refused extra time, but expected me to do cursive. Neatly. I can’t do that at 26, nearly two decades later. It was unreasonable to expect it of me at 8.

I started to have trouble in school. A lot of trouble. Not with the subject material because aside from handwriting and phys ed, I was ahead of grade level in this new school system. I had trouble behaviorally. A lot of trouble behaviorally. Just as the psychologist had predicted, I acted out when I was bored. Since the work was so easy and the teacher refused to let me do anything except sit quietly at my desk when I was done, I was bored a lot. By the end of the first month, I spent more time in the in-school suspension room than in class.

Not that I minded, because my first-grade teacher’s prediction had come true as well: Different now also meant bullied. I did not make a good first impression when I spent my introduction to the class monologing about weather until the teacher had to cut me off and send me to my new seat, and tormenting me quickly became the class past-time. The teacher didn’t like me because of my behavior problems, so she turned a blind eye or punished me for being the victim just to get me out of her hair. I soon knew the secretary on a first-name basis and became her darling.

“I don’t know why she keeps sending you here, sweetheart,” the secretary would say. “You’re a great kid!”

And for her, I was – the in-school suspension room was quiet, free of bullies, and the secretary would let me read as much as I wanted of whatever I wanted once I was done my work (boooks!), so I wasn’t bored. Why wouldn’t I behave?

A conference was called to sort out my behavior issues. The teachers and new principal asked me why I was so bad in class but so good for the secretary and I shrugged and said, “I dunno.” They asked how I felt in class. After a long silence during which I fidgeted a lot, I said to the table in front of me, “Bored.” What bores you was the next question. “All of it.” I replied. There was a lot of back-and forth that I ignored in favor of studying the pattern on the table. I remember my parents arguing for me getting a modified curriculum, the principle debating whether to skip me ahead, and my parents arguing that I was behind enough socially already and that skipping me ahead would only make things worse. In the end, they agreed that I would stay with my age-peers, but I’d be given more difficult work and that I could grab books to read at the back of the room when finished.

Those accommodations never happened. My teacher felt that she could hold my more difficult work hostage to me “behaving” and regarding getting a book, “If I let you, then everyone will want to”. So I kept misbehaving. And getting sent to the in-school suspension room. Other teachers joked that they should water me like one of the plants, I was there so much. I would tell them they shouldn’t water me since I’m not a plant. I didn’t get why they found that funny.

Another conference was called. I told the principal that the work was still too easy and that I wasn’t being allowed to get a book. The teacher lied and said I was. I got punished for being a liar and melted down, throwing a chair at the wall and hitting myself. My parents were shocked at the “tantrum” since I’d never been a difficult child – my mother says I seemed to skip the terrible twos entirely, so long as I had blocks to stack and stuff to sort.

My parents locked me in their car while I melted down and went inside to finish the meeting. They told me later that the principal suggested they take me to a developmental psychologist, since he felt my explosion wasn’t normal and I was definitely having a lot of trouble socially and behaviorally. He said he wasn’t sure it was me willfully being bad, since I was so much better in the in-school suspension room. He said there might be something making the difference between the two environments. My parents refused. “There’s nothing wrong with you that discipline and more difficult work won’t fix.”

This pattern repeated with varying severity all through school, as my handwriting fell further and further behind grade level, and the bullying worsened. I was either the pet or the terror, and it all depended on whether the teacher kept me interested. I got a reputation for being high-strung, unpredictable, wild, undisciplined. Later: untidy, disorganized, scatter-brained, rude, and overbearing were added. I was told often by teachers that as smart as I was, I could be anything, but I probably wouldn’t because I didn’t want to. My third grade teacher was the first, but not the last, teacher to predict that I would never amount to anything in life and would likely be in jail by 20. She was the only one that went so far as to call me worthless and a bitch, or to tell other kids to hit me for misbehaving, though.

I was frequently singled out in gym for humiliation by the teacher since he felt I couldn’t possibly be that bad at [insert skill here]. Except I was.

Sometime around fourth grade, my parents had started giving me “handwriting lessons” where they’d scream at me that it wasn’t hard and that my hand didn’t hurt as I cried and tried to finish the damn sheets neatly enough to satisfy them. I never succeeded. When the pain of my hand got too much, I’d refuse to write anymore and then my parents would physically restrain me and my father would force me to finish the sheet neatly. “There!” they’d say cheerfully when he finished, giving me a hearty smack on the back. “That wasn’t so hard, was it?”

“I hate you,” I’d often reply, and get sent to my room.

That went on for over a year. One day, on summer break, my mother thought some extra practice might be a good idea for me, so my handwriting didn’t atrophy over the summer. I came inside from climbing trees and saw the handwriting set up on the dinner table and immediately melted down. I don’t remember what happened. I do remember that whatever I did, my throat and hands and head were sore afterwards and it convinced my parents their “lessons” were making me miserable, because I never had to do them again, and my parents secured an agreement from the school that I wouldn’t have to do any more “extra practice.”

The school responded by end-running my parents’ refusal to force me to torture myself with handwriting lessons: They started making handwriting quality part of the marking scheme for all of my subjects, and they refused to let me type. My grades in all subjects plummeted. I’d been a straight 95%+ student. I still deserved those marks, but because I physically couldn’t make good enough handwriting, my marks plummeted to low 70s. I spent hours copying over my assignments, often to no avail. When I hit burnout, I wouldn’t do any homework, because a 0 I deserved was less painful than a 72% I didn’t.

(Note that I was, and remain, a perfectionist. A 100% was the only mark I ever felt happy about, and if I got below 95%, I would cry about it. A mark below 75% would induce meltdown. If I made myself not care and refuse to do it, it protected me from the inevitable disappointment of an low mark that I couldn’t help.)

The bullying got worse. I came home crying at least weekly, and I had a lot of bruises on my back and sides from kids hitting me. They made a game of tag out of it: They’d hit me hard enough to bruise, and then go tag their friends. “[my name] germs, no returns!” they’d sign-song. Another time, they refused to call me by name, and instead only referred to me as Beaver – because of my overbite – for two months. And so on. I told my parents, and was told that I should stand up for myself. I stood up for myself in school and got punished by the teachers. I told my parents and was taught that I shouldn’t stand out so much. I tried not standing out, and my clumsy attempts at fitting in were met with derision. I told my parents of my failure, and was told that I should develop a thicker skin. I was over-sensitive. I should just ignore them. I wondered how you could “just ignore” every single interaction with your age-peers, all school day, every school day, for years on end. They told me to stop being defeatist, and that I could fit in if I wanted to, but I must like the attention of standing out.

I began to internalize a lot of bad things. Lazy. Willful. Bratty. Careless. Apathetic Doesn’t want to succeed. Stupid. Freak. Ugly. Thin-skinned. Over-sensitive. Defeatist. Etc. I was receiving the messages on so many fronts – from my parents, from my teachers, from my classmates – that I felt they couldn’t all be wrong. Maybe I really do just not want to work hard enough. Maybe it really is all my fault.

I have spent the time since I left high school trying to erase messages I internalized by the time I was twelve. All because I wasn’t given the right “label” and instead of receiving help for my disabilities, I was written off as a lazy brat. That is how a refusal to give your kid the gift of a correct diagnosis harms them. Because they’ll get labelled anyway – and it will be with words a hell of a lot more painful and a message a hell of a lot more difficult to overcome than simply “different” or “disabled.”

Things, for me, only started turning around when I had a teacher who was willing to look past the endless notes of “does not work up to potential” “is careless in her work” and “behavior problems need work” and actually try to get to the root of the problem. She challenged me where appropriate and accommodated me where necessary. She taught me that I could succeed when I wanted to – I just had to be allowed to type in order to be able to. She arranged typing accommodations and got a label that worked for me, rather than one that worked against me. I wonder how much less pain and how much more progress I could have made in school if more than just my handwriting issues had been addressed. I’ll never know, because my parents refused to even investigate the possibility their kid might have a disability, out of fear of some ominous “label”.

But let me be perfectly clear: Not having any label didn’t stop me from getting labelled, and not having a diagnosis did me far, far more harm than having a diagnosis might have. I don’t know how to convey this to someone who didn’t grow up with absolute knowledge that you would never amount to anything, but the baggage of my childhood is such that every birthday I spend still not in jail and not in a substance abuse induced stupor and not in criminal activity? Is a surprise to me. Because on some level, I still feel like I’m destined for criminality and a bad fate. It’s all my teachers ever expected me to amount to.

And as a result of that? I’m a 26-year-old PhD candidate with two degrees under my belt and a 4.3GPA, and I still don’t feel good enough. And I don’t think I ever will.

Think on that, and then try to tell me that it’s better not to get kids appropriate diagnoses for their disabilities.