Why I am Angry

First, I’m not planning any violence. And that’s exactly why I’m angry.

I’ve learned that if I say I’m upset, I have to also explain “but that’s okay, I’m not going to kill anyone.”  I have to give disclaimers when expressing myself, lest someone misinterpret what I say.  And, yes, that makes me angry! Still, I’m not violent and don’t want to hurt anyone.  You can be angry without that. See, I had to do it again.

I’m angry because of the power imbalance autistic people have to live with every day in advocacy.  If we advocate for autistic people, we have to be particularly careful to let parents of autistic kids know that we understand life is hard for them, even when that has nothing to do with the particular point we’re advocating.  We have to be careful to state that we know that there are wonderful parents, and we’re glad about that.  Only then are we allowed to talk about the critical issues that affect our lives and the lives of other autistics.  But, even then, we’re subjected to inferior status – we can advocate, so long as it isn’t something that any significantly loud group of parents dislikes.  Again, more need for disclaimers!  Heck, this even happens to those of us who are autistic and parents of autistics both (I’m not, but know many who are).

I’m angry because people want to classify and segregate us into neat little categories.  Is he an angry autistic?  A quiet autistic?  A vocal autistic?  A typing autistic?  A competent autistic?  An incompetent autistic?  Low functioning?  High functioning?  Angelic autistic?  Evil autistic?  I’m probably all of these and none of these, depending on when and where.

I’d like to be able to just be me!  I shouldn’t need to explain why I don’t fit into a certain box, or that someone might be a wonderful parent, or that if I’m upset that this isn’t the same as being violent.  I should be allowed to have my emotions, my points of view, my ideas, my being.

Sure, I recognize that I live in a social world with others that have emotions, points of view, ideas, and being all their own.  I’m not suggesting that we get rid of that (in fact, I believe it is often a wonderful thing).  But I should be able to say, “I’m angry about X” without people looking to see if I am carrying a gun, just as anyone else can say this same thing.  Being autistic doesn’t make me dangerous or any of the other things that people might assume about an autistic person.  I should be able to say that I’m angry about how some autistics are given quack medical treatments to cure them – without needing to immediately say “but not all parents are bad!”  Of course they aren’t – I never said they were!

So, yes, this makes me angry.  Again, angry.  Not murderous.

Joel, You’re Not Polite!

First, a word on the word “bigot.”  I’m old enough that I know there’s a time to be nice – that’s when people, upon hearing of an injustice, make real, concrete steps to fix it while seeking out the input of those they hurt.  I’ll be nice when that situation seems possible.  But if you demonstrate that you don’t get it, I’m not going to make it easy on you or comfortable for you to act bigoted.  Sure, a bigot would like me to say “we have a small disagreement” rather than “you are a bigot.”  After all, “we have a small disagreement” means he doesn’t have to implement any change.  “You are a bigot” requires action – either more bigotry or a turn from bigotry.

To be honest, if everyone called out bigotry in direct, “harsh” language, there would be a lot less bigotry.  One thing that allows bigotry to continue is when those not directly involved simply stay silent or minimize the act, out of politeness towards the bigot.

If you are going to increase your bigotosity just because someone pointed out your bigotry in a rude way, well that’s pretty much the definition of a bigot.  Feel free to be rude back to someone rude to you – but if you’re doing something bigoted, it’s time for a change, even if it was pointed out in a rude way.  You’re not morally superior if you hold your ground on bigotry because the other person committed a moral transgression in your eyes (rudeness).  No, in that situation, you’re trying to be controlling.  You’re trying to enforce your idea of rudeness.  Well, that’s fine, but please do it with something other than bigotry as your “stick.”

In fact it is politeness, or the perceived idea of politeness, combined with power imbalances and subtle bigotry in bystanders that prevents people from confronting bigotry.  For example, watch people’s reactions much of the time when a non-disabled person refuses to give up a seat on public transportation to someone who apparently needs it more.  Now, I’m not talking about someone who explains that they need the seat – I’m talking about someone who just doesn’t give a care about someone else.  We’ve been taught it’s rude to get involved in other people’s business.  Sure, we’ll probably speak up if the seat-hogger himself gets rude towards someone else, but if he stays silent, we generally do to.  In other words, we’re more concerned about the seat hogger’s feelings than the person who needs the seat.  So who has the power?  Obviously the one that gets us to react in a way that helps them.

Granted, I probably wouldn’t recommend yelling at the seat hogger, “You dumb ass, can’t you see that someone else needs that seat more than you?”  I would probably suggest an attempt at politeness.  But if that request is refused, or people on the bus know that this person does this repeatedly and polite discussion doesn’t work, then it may be time to at least make the person as uncomfortable as he’s made the people who might need his seat.

My tactic is to generally point out a problem to someone and then watch where they go with it.  Generally, I give them a lot of time (sometimes months).  I start with giving them a chance to see the problem for themselves, after pointing out something that should make the problem obvious.  Later, I explain the problem in detail, again still trying to be “polite.” But if no movement happens, I’m done with politeness – since clearly that didn’t work.  I’m going to be direct enough that it’s not comfortable to remain doing the wrong thing.  Other people do things differently, and I’m glad there are many styles of advocacy.  Sometimes my style works.  Sometimes someone else’s works.  That said, I’d be curious if politeness has ever worked when when someone doesn’t correct the issue in a relatively short period of time – I think at a point, it takes shame, negative publicity, rudeness, and refusal to allow the action to continue without being contested.

To me, the ironic thing is when I’m accused of being rude – perhaps a harm that I’ve caused – but the harm I’m complaining about is far worse than simple rudeness.  For instance, I remember being handed a friend’s wallet after she paid for some items in a store.  The clerk thought I was her minder or something, and that I should have her credit cards and cash.  I asked the clerk, “Do you normally hand cash that belongs to one person to another person?”  The clerk responded by saying, “You don’t have to be so rude.”  Maybe he was right – I don’t know.  But it’s interesting that now the problem was my rudeness, not the fact that he just treated his customer as if she was incapable of holding her own wallet, and, by extension, managing her own financial affairs.  I’d say that was rude too.  Probably more rude than a complaint about giving somebody a wallet that belongs to someone else!

Really, this wasn’t about rudeness.  It was about comfort.  The clerk was now uncomfortable, just as my friend was when her wallet was handed to me.  And we’re not supposed to make you uncomfortable, apparently.  Even if you just made someone very uncomfortable, dismissed their ability to manage their own affairs, prevented them from accessing services, or were otherwise doing something bigoted.  Bigotry is not supposed to be confronted “rudely,” at least if the person doing it thinks they are a nice person who has done nothing wrong in their own eyes.  A large amount of this isn’t about rudeness, but rather about being right or wrong.  And being told you’re wrong often feels rude.  Sure, maybe the right words will help you digest things, but at the end of the day, you either are or aren’t willing to change your behavior and recognize your prior behavior as bigoted (whatever word you use for it).

I’d be curious how others handle this.  What do you do when weeks or months of politeness fails?  Do you stay polite?  What are you changing to get change in the other person or organization?

On Oldie: A Story about Inappropriate Behavior

This is from my old website (well, with slight edits for grammar), a fictional (well, only slightly fictional) story about “inappropriate” behavior.  Too often, people dismiss behavior as “inappropriate” without truly understanding the reasons behind the behavior.

A Kitchen Tantrum

She’s in the kitchen, screaming at the top of her lungs.

You would think that a murder has occurred. It’s disturbing the entire family, interrupting everyone else. It’s demanding immediate attention from everyone in the house – everyone’s expected to just drop what they are doing, and come deal with this new crisis. There is no consideration for the other family members.

Once everyone rushes into the kitchen, you see the scene. She’s on top of a chair, holding a 8 inch long kitchen knife. She’s hysterical, and can’t be talked down from the chair. Yet, this has happened before, and people, after a little snicker, realize that this isn’t a major crisis after all. This is something we, as a family, can handle. Soon, we’ll be back to our own individual routines, but right now we have to handle the crisis.

A small mouse on a blue backgroundOf course mom is still screaming, “Get it out! Get it out!” Dad runs behind the chair, and tries to corner the small, and otherwise cute, fuzzy critter against the cabinet. Of course this critter is smarter than that, but with the help of one of the kids, we are able to scoop him up into a small cardboard box, take him outside, and release him – away from the sight of Mom.

While Mom is still out of breath, and obviously worked up, now that the problem has been dealt with, she’ll be back to slicing up vegetables for the evening dinner within 10 minutes. The crisis is over.

An Analysis

First, everyone (except maybe Mom) knows that Mom and the family were never in any real danger. The small mouse, weighing only a couple of ounces, never posed a threat. This is simply one of Mom’s phobias, one of the things we’ve grown use to living with her. She is terrified of mice, rats, large bugs, and a bunch of other things that scurry or crawl. We know that, and we’re willing to come to the rescue and help her out occasionally – heck, it gives us a chance to prove our masculinity by rescuing her from the horrible spider or mouse! We get to be the hero of the day when we remove such a creature from her presence.

Now picture the same story, but this time without a mouse. You might not know why the lady is standing on the chair with the knife. Obviously this is scary, but probably even more so for the lady, who is unable to tell you (at that point in time especially) what exactly is bothering her. She’s not rational, she’s waving a knife around, she’s screaming and hollering. Most people would be terrified – not of what she is scared of (since no one knows what it is), but rather of her. Is she going to jump down off that chair and stab the entire family? Is she going to hurt herself? Should we call the police? The ambulance? Is she off her medication?

Of course no one asked this about Mom. We saw the mouse, we understood what was frightening her, even if she wasn’t really ever in any danger.

A Real Danger

Too often, however, in such a situation, when it involves an autistic person, people assume that the autistic doesn’t have a reason for their actions – that they are simply irrationally violent and about to hurt someone. Often, rather than waiting for the person to naturally calm down (assuming they have a reliable communication system while calm), or examining the situation for possible stress, people assume irrationality in people who are different than them.

Yes, maybe the autistic person is terrified about something that truly isn’t dangerous – like our mouse. We do sometimes have fears that don’t make sense to everyone else. But so does Mom.

But, maybe, the reason we started screaming when we were told about how there would be no staff person to come by tomorrow, or that we would have to prove we still qualify for staff, is because we’re terrified of not having food to eat – of starving. I ask you: Which is more scary – a cute mouse or the prospect of starvation? Yet, Mom’s behavior is, well, expected, while the autistic who screams during a plan review session is acting inappropriately, even “violently”.

Sometimes I have a hard time understanding neurotypical behavior.

Yes, You Might be an Ass!

Donkey looking over a split-rail type of fece at the camera, with a smaller donkey in the backgorund

Donkey by bagsgrove (flickr) – Licensed CC BY-SA 2.0

Autistics are not like NTs (neurotypicals) in the social arena.  We may not pick up on emotions the same way as others.  We may not be motivated by feelings of belonging in the same way as NTs, and may be more likely to go against the crowd (for good or bad).  Our emotional expressions may be misunderstood by neurotypicals.  We may communicate differently or less frequently about our feelings and thoughts.

Some of these things can lead us to being considered rude, jerks, or, yes, even asses.  For instance:

  • YOU SEE: You are someone who doesn’t care that I’m upset
  • I SEE: I didn’t realize you were upset.  I wish I did.
  • YOU SEE: Why do you have to make a big deal out of this?  Can’t you just get along?
  • I SEE: I’m not supposed to express my opinions and thoughts here?
  • YOU SEE: You’re not upset that this happened to me?
  • I SEE: I am upset!  I’ve been trying to tell you!

There’s a lot of these NT/Autistic misunderstandings in any relationship.  Heck, these same types of misunderstandings can take place among pairs of autistics or pairs of NTs – autistics don’t have a monopoly on being misunderstood or misunderstanding others!

While these types of misunderstandings exist, and they might even be more frequent when NTs and autistics mix, that doesn’t mean that every argument between an NT and an autistic is rooted in the differing neurologies.  Sometimes an autistic person is an asshole.  Sometimes they don’t care about another person.  Sometimes they are mean.  Sometimes they are selfish.  These things aren’t autism, nor are they unique to autistics (how many Fortune 500 CEOs truly care one bit about the janitor?  Maybe a few, but certainly not all).

There is a theory that “autistics are morally superior.”  This sometimes gets brought up (typically around Autistic Pride Day) to show we’re better than NTs or some such nonsense.  But usually this theory is presented in a bit more subtle way: how dare you accuse me of being a bad person, when I’m autistic!  Uh, no.  You might actually be a bad person.  You might not be.  I don’t know.  But I do know all of us are capable of evil deeds (both autistic people and generally “good” people are).

Maybe a person is being perceived as an ass because of his expression of autism – but he isn’t actually an ass.

But it’s also possible that the person perceived as an ass, even if he’s also autistic, really is an ass.  We can have the same sorts of human evil and immorality as everyone else.

So…don’t be a donkey.

What Makes a Good Communication System…Part 3

A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscationI’ve written about what makes a good communication system.  This time, I want to talk about newspeak and why it’s important to include controversial words in a communication system.

(Previously, I wrote about the need for a way to say “no” and the need to be able to report abuse)

I remember a talk a few years ago at Autreat where an audience member, during a demonstration of various AAC equipment, talked about how she didn’t like that a device had an icon representing a popular fast food joint, since that was essentially free advertising of the chain, the chain had very unhealthy food, and a child with such a device would then be asking to go there more often, when its’ more desirable to go elsewhere.  I’m probably paraphrasing things wrong, which is why I’m keeping this somewhat vague.

I had a problem with that thinking.  Sure, a parent may decide it’s a bad idea to go to a fast food chain for their child, which is certainly a parent’s right (and, frankly, probably good for the kid’s health).  But eliminating the vocabulary to ask this is not encouraging communication, nor is it providing the same sort of teachable time that a child who speaks would present.  A parent has the right to say no to a child’s request.  And, in fact, parents do so quite often – for the good of their children.  Eventually children learn that some things are off-limits and that continued pestering of the parents will result in negative consequences.  As for the icon choice being free advertising, how else would you represent a fast food chain?  The brand logo seems like an obvious choice!  (note that I did agree with her that only including one fast food eatery isn’t a good idea – any system should strive to include multiple options.

There’s far more controversial things than fast food chains, though.  If you spoke during primary school, do you remember when you first said a naughty word?  For most of us, I’m guessing that was pretty much the first year we were at school.  Certainly most of us knew enough to not say it in front of the teacher (although some of us probably learned that one the hard way!).  In other words, we learned an proper time and place for cussing: you can laugh about the words with your friends on the playground, but don’t do it in front of any adults or any tattle tales!  This is a huge lesson when it comes to communication: language use should differ in different environments.

So, when should a child have cuss-words as part of their vocabulary, if they use a non-spoken language system?  The answer is, for parents and teachers: before you would like them to!  Certainly a school or parent shouldn’t spend hours teaching how to cuss, but the language should be subtly made available, and consequences of its’ use should also be made available!  If the child does cuss at mom to get a reaction, it’s entirely proper for mom to react – just not by eliminating vocabulary.

Likewise, when was the first time you might have talked to another kid about sex?  Once again, it was probably well before it was “age appropriate” in the eyes of parents (who probably would prefer those topics to wait some time).  A language system needs the words that a 13-year-old will use when secretly looking at Playboy magazines with another kid.  You might not want a 13-year-old to look at Playboys, but that doesn’t mean he shouldn’t have the language to express himself.  You don’t duct tape the mouth of a typical child so he won’t talk about naughty pictures with a friend!

In 1984, George Orwell describes a future where words are eliminated from language to ensure “goodthink:”

“Don’t you see that the whole aim of Newspeak is to narrow the range of thought? In the end we shall make thought-crime literally impossible, because there will be no words in which to express it. Every concept that can ever be needed will be expressed with exactly one word, with its meaning rigidly defined and all its subsidiary meanings rubbed out. … Every year fewer and fewer words, and the range of consciousness always a little smaller.”

Sadly, I’ve seen communication systems for Children programmed to offer a sort-of “newspeak.”  I’m sure it also happens with adults.  It’s convenient to never have anyone bring up any uncomfortable subjects, never have words that cause disruption.  But it’s not how typical children (or adults) communicate, and it’s not how people with communication disabilities should be forced to communicate.

Certainly different people need different vocabulary, but I very much support a vocabulary system that can include words that may not be the focus of instruction, and may even be “inappropriate.”  Newspeak is not an alternative to teaching proper language use!