I’m not doing that

Apparently I’m confrontational. This is to the people who think this.

I’m too abrasive to do effective advocacy.

Too rude.

Too direct.

Too inflexible.

It’s because I say things like, “Autistic people, not non-autistic family members, should be directing the autistic advocacy movement.”

That means exactly what it says. It doesn’t mean that non-autistic parents shouldn’t speak up (or, indeed, speak for their kids at times) for the good of their kids. Nor does it mean any of 1000 other things that people read into it.

But that’s not how people too often hear it. And I’m the one who is supposed to translate my language into something that nobody can take what I left unsaid and make it say something I didn’t say. Something like “parent’s shouldn’t be involved in autistic advocacy” or “non-autistics are bad people” or whatever else I didn’t say.

Sorry. I’m not doing that.

I’m sick of disclaimers. I already have to put too many in place – see the above three paragraphs!

If I say, “people shouldn’t mention lack of services in the same sentence as discussing the murder of an autistic person by their family,” people think I’m saying that lack of services isn’t a legitimate problem. Well, I’m not. And I’m not going to write four paragraphs every time I say something like this to explain that, no, I didn’t say anything about your stress level or ability to get services your child needs.

Sorry, I’m just not doing that.

Nor am I going to pretend that non-autistics that are trying to appropriate my community’s identity are okay. It’s not. There is a difference between someone experiencing autism in themselves and someone experiencing it in someone else. Sure, someone else might have tremendous love and insight – which is awesome and great. And they might say and speak and do great things that help many people. I too will celebrate it. But it’s not your identity. It might be your kid’s, which means you care what happens. That’s fine.

I know there are decent neurotypicals (and, no, neurotypical is not an insult). I shouldn’t need to say that every single fricking time I write something!

I certainly shouldn’t need to go further and constantly gush over the people who do it right. You don’t become an ally so you can be gushed over. It shouldn’t be necessary. If I compliment or acknowledge goodness, that’s a fine thing. But it shouldn’t be required of an autistic person doing advocacy!

I’m asking for my community’s allies to loose a bit of defensiveness and not read everything written by members of the community they are advocating for as if it might be hateful towards them. I’m not hateful of neurotypicals. Nor are most of us (I’m sure someone can find counter examples of hate from autistics, but that’s not the point – I’m not claiming my community is perfect). Heck, I’m one of the first typically to call out an autistic who implies that all neurotypicals are evil or bad or hateful. But by the same token, I should be able to write about discrimination and problems we experience in a world not designed for us without everyone thinking that I’m implying all neurotypicals are bad or evil.

Our ability to speak about our own community should not be dependent upon being good little autistics. It shouldn’t be dependent upon people not seeing any way to take our words wrongly. It certainly shouldn’t be dependent upon people who claim falsely to be allies feeling good about our words. If you’re only our ally when we’re polite and nice and have the right disclaimers, you’re not a good ally!

For those allies that get this, thank you. We do appreciate it.

Some good news…autistic teen gets a replacement bike

There’s been a lot of bad news lately. But there’s also good news too. A Utah teen received a gift from a stranger (from KSL, with video) who wanted to replace his stolen bicycle.

I too learned the hard way to lock up my bike. I lost two bikes in my home town – both were found bent and broken (with no pieces missing, just destroyed) in a field not far from my house. Mine were most likely stolen by other kids who just thought that it was a fun thing to do to the autistic kid who lived down the street.

Like A.J, the bicycle represented freedom. You didn’t need a destination to ride a bike. You didn’t need a friend to go with you. And you could be anywhere you wanted to go, so long as you were willing to move your legs enough! It was the one time when my body worked in harmony with my desires – it was natural to ride the bike. Today, I don’t ride the bike as much as I should, but ride the motorcycle instead – for exactly the same reasons.

Someone who is used to having freedom and being in touch with their bodies probably doesn’t understand how freeing the bike can be. I know that many other autistic people – I see how well and careful my wife is with her large scooter. She (like me) is significantly more careful with it than most people are with their motorcycles. It’s more than two wheels and an engine, it’s a chance to enjoy being in the world. That’s not something we always get to do.

So I can relate to what this teen must have felt when he found his bike missing. Like his family, mine must have been equally baffled when they discovered my bike missing, something I was ashamed to tell them happened (because of course I was told to take good care of it – and saw it as a personal failing that some criminal youth decided to be nasty). I’m glad he got a new one, and I hope that the family can keep this one from being stolen (and I hope they catch the thieves that stole the last one). Fortunately my family was always able to replace my bike – they weren’t rich, but mom always found something for me and I always ended up with something I was really happy to have. I’m glad A.J. can enjoy his rides again! I know how enjoyable a simple bike ride can be.

All that said, wouldn’t it be nice if we could just be left alone when we have enjoyment? Hopefully A.J. gets that chance now.

Microvalidations and Feelings of Normalicy

I wrote about micro-aggressions last week. There’s another side of this – microvalidations.

These are the tiny things that most people probably wouldn’t notice as validations (just as most wouldn’t see the micro-aggressions as aggression), but someone directly affected by them absolutely can and does notice. Often, microvalidations occur at the very instant that a person is bracing themself for a micro-aggression.

For example, these may be:

  • An autistic adult sees an advertisement for an autism organization that says, “Our goal is to support autistic people and their friends and families” rather than “Our goal is to support the families of people with autism” (this is doubly-microvalidating – first, it recognizes that autistic people themselves need support; second, it uses the language typically preferred by autistic people to refer to autistics).
  • An epileptic student is told by a new teacher, “Of course I’m glad to learn more, but I read and appreciated the material you provided ahead of time about your needs” rather than believing the material to be a waste of time reading.
  • A trans-person is introduced by their parent using the proper pronouns.
  • A disabled and non-disabled person dining together are asked “How would you like the check?” rather than the waiter just handing the check to the non-disabled person
  • An atheist filling out a demographic form sees a religion question that includes an option for a person who doesn’t believe in religion
  • A summer camp registration a gay parent is filling out has blanks to list “parent(s)” rather than “mother” and “father”.

There is a couple of important things about a microvalidation. First, it must be natural and normal – it shouldn’t draw undo attention to the difference, unless it is acknowledging a difference that needs to be acknowledged. For instance, the epileptic student might like to know that material they provided their teacher was actually read. But, outside of that type of situation, most people don’t want differences that are irrelevant to the current situation to be a big deal. This isn’t about ignoring differences, but about not gushing over the difference.

Secondly, the microvalidation is inclusive – it shows that the person is part of the community, whether that community is a loose community of “people we want to return to our store” or a tight community such as in a family or at a church. It always seeks to respect people, not to reinforce power imbalances.

That’s basically it. This is not complicated. The following aren’t microvalidations, and can be in fact micro-aggressions:

  • An autistic adult sees an advertisement for an autism organization that says, “Our goal is to support the families of people with autism but adults with autism are welcome to come with their caregivers”.
  • An class is told by a teacher, “And we have someone who is very special in our class. He has epilepsy.” without asking the student with epilepsy how they may (or may not) want the class told.
  • A trans-woman is introduced by their parent as “my son.”
  • When a disabled and non-disabled person dining together are asked “How would you like the check,” and the disabled person says she will take the check, the waiter looks at the non-disabled person for confirmation
  • An atheist filling out a demographic form sees 20 distinct religions listed, but just “other” for his views
  • A summer camp registration a gay parent is filling out has two blanks, one labeled “mother,” one labeled “father”

The key with the above – and all are at the least micro-aggressions (some come close to being outright aggression) – is that they ignore the existence of the person, ignore the normalcy of the person (typically by gushing over how great it is they are different), or fail to give respect to the person’s own self-determinism.

So, spend today watching the world. See how many micro-agressions and micro-validations you see throughout the day for different people (you might put yourself in the shoes of a citizen that is the child of immigrants, a disabled person, or a gay person). You may be surprised by how many micro-aggressions are there and how few micro-validations are there.

Microagression and Microavalanches

There’s a word coined in the 1970s – maybe earlier – around race that perfectly describes what a minority group experiences most of the time for prejudice among a supposedly enlightened society: microagression. This is, for many people, the thing that makes their life hell. What is this prejudice?

Hint: it isn’t violence or threats of violence.

It can also be the little stuff, the stuff that day-in and day-out someone faces. It’s the stuff that if it happened one time would truly be no big deal – but because it happens all the frickin time – these little things become an avalanche. And, of course, when the person experiencing this crap day and night dares to say something about it, they are blowing things out of proportion. After all, “it wasn’t that bad.” No, in isolation it wasn’t. And “they meant no harm.” Maybe, maybe not, but prejudice still hurts and action must be taken to stop it. And this action isn’t “get the victim to do the educating.” You see, that’s yet more microagression.

Probably the best way to explain microagression is to give examples:

  • A hispanic person is asked, in the US, “do you speak English?”
  • A child who experiences seizures finds himself having to explain what causes seizures and what to do about them to every new teacher.
  • A trans person is greeted with the wrong pronouns by a store clerk.
  • An autistic person is asked, “Why does my autistic child do X?”
  • The non-disabled adult sitting with the disabled adult is handed the check automatically by the waiter.
  • A woman joins a motorcycle repair forum, only to find surprise and disbelief that a woman can understand how engines work.
  • A Sikh is asked his opinion on Osama Bin Laden by a new acquaintance.

Notice the above? Any of the above may occur without any conscious awareness by the person doing them that what they are doing is likely offensive or hurtful. The person isn’t trying to hurt the victim, but the effect is just the same.

Being asked once a year or two if you speak English is hardly offensive to most people. But if you get asked this question every time you interact with the government, while others are not asked this question, you probably start to get annoyed and upset, especially if you don’t know any other language and have lived in an English speaking country your entire life (which the person can’t tell just by looking at you, regardless of your skin color). Why shouldn’t you know English? And who says that whites all speak English?

Being asked as an autistic adult, “Why does my autistic child do X?” is not an intent at offense most of the time, but rather sincere curiosity and concern for their child. But we’re not experts on your child, at least most of us aren’t.

Plenty of women don’t understand engines. But plenty of men don’t either (go read some of the motorcycle repair forums – and see the incredibly bad advice given). Yet people often make the mistake – often unintentionally – of seeing someone’s gender and assuming that they can now tell if that person knows engines or not.

Of course all of the above can also occur for sinister reasons. Someone might intentionally use the wrong pronouns for a trans person to show their moral disapproval. Others might not believe the child really has seizures so thinks they need to “test” the kid to see how knowledgable he is about them, so you can catch them in a lie. Another person might show their dislike for non-Christians by prodding a Sikh with questions about Bin Laden.

The key is all these things allow someone to still say, “Oh, I didn’t know!” You get the benefit of being nasty and hurtful without having to take responsibility for your actions. And of course the people doing it intentionally say they weren’t, as do the people that weren’t.

Add to that, most people, when confronted about a microagression, whether intentional or not, will respond poorly. They will turn the conversation around and see themselves as a victim of political correctness, of a slight etiquette misstep that the other person is taking way out of context. After all, they didn’t attack the person!

At the end of the day, it is this refusal to take responsibility that is most insulting. Someone truly acting in ignorance will take responsibility if they are a decent person. If they aren’t, if their ego is more important than the other person, if being right is more important than the other person, then they will not take responsibility. They’ll get upset at the person for “blowing it out of proportion” because, after all, they “didn’t mean to hurt you.”

Yet, often in life we face consequences for acts we don’t mean to do. I might forget to put a stamp on a job application I’m mailing and fail to get the job. I might leave dinner going too long in the stove and find it burnt. I might drive faster than I should in a moment of inattention and get a ticket (if I’m lucky to not cause an accident).

In addition, all of these behaviors, even when unintentional, are still hurtful. They all point out that we’re weird and don’t really belong. Being an outcast is not enjoyable. Sure, you don’t mean to “other” us by asking me about your autistic kid – but when that’s the only type of thing you want to know about my life, you don’t see me as a full person.

Now, I’m not saying that it’s bad to recognize differences. It’s not. Sometimes we need you to recognize our differences. Sometimes we want to share about our culture or life experience. Sometimes we do want to educate you. Sometimes we want to be treated in an appropriate way that is different from how you treat others.

And sometimes we want to be believed when we say, “Hey, this wasn’t accidental on this person’s part.” Sure, what they did might sound like it could be accidental, but the person relating the story likely has a lot more life experience dealing with how people interact with them. Yep, they might be wrong. So this shouldn’t replace, for instance, the court system’s process of examining evidence! But at the same time, part of stopping bullying involves stopping the intentional microagressions, while also educating others on the harm of microagressions.

And, just for reference, here’s some ways people could have responded in the situations I mentioned above:

  • A hispanic person is asked, in the US, “How can I help you?” If the person doesn’t seem to understand, then you should figure out what language they speak or use (in the case of a deaf person). Even better, you have obvious and clear ways for people to indicate their preferences (a government office with multiple windows might have a sign indicating what languages the clerk speaks, and invites people who don’t speak English to use that line).
  • A school makes it standard practice to share key student information with new teachers, while also providing an opportunity for students and parents to refresh and review the information that is given. Then, specific, relevant, questions are asked as needed, but the person who experiences seizures isn’t expected to answer the same question 10 times because there are 10 staff members.
  • A trans person is greeted by name by a store clerk, and if a mistake is made and the person says, “It’s not Ms, it’s Mr,” the clerk immediately corrects themself and says, “I’m so sorry sir” and then moves on using the right pronouns.
  • An autistic person is asked if they know of any good references for parents about parenting autistic kids, or other ways of getting that information.
  • When two or more adults are sitting at a restaurant table sharing a check, the waiter asks how they want to handle the check.
  • A womanperson on a motorcycle repair forum has a chance to show her intelligence or ignorance when it comes to motorcycles before any judgement is made.
  • Someone seeing someone wear religious garb asks if there is any symbolism in the person’s clothing

Maybe those aren’t all the best ways of responding, but they are likely better than the first attempt. Sure, you might not know that some of these ways of interacting are tiresome and hurtful, so you’re going to make mistakes. Again, the mistake isn’t the horrible part – but being stubborn if confronted is. And doing it intentionally certainly is.

There’s also some ways people observing can help – and these can be the most valuable and useful, as it shows the person, “No, you are one of us! You are part of our group, not an ‘other’.” Here’s some examples, from the above:

  • A hispanic person is asked, in the US, “do you speak English?”. A friend observing this might respond by saying that it might be quicker to just ask something in English and see if he gets a puzzled response or not. Or “what would you do if he said he spoke Russian?”
  • A child who experiences seizures finds himself having to explain what causes seizures and what to do about them to every new teacher. Another teacher could preempt this if she knew the kid was going to transfer to another teacher, by making sure the teacher gets this information ahead of time. But I admit this is a harder one.
  • A trans person is greeted with the wrong pronouns by a store clerk. A friend corrects the clerk so the trans person doesn’t have to (hopefully the clerk takes the hint).
  • An autistic person is asked, “Why does my autistic child do X?” Again, this is a hard one – I’d love to hear how a friend should respond. Probably should work it out with each other as part of the things you learn about each other during friendship.
  • The non-disabled adult sitting with the disabled adult is handed the check automatically by the waitress. Depending on your snarkiness, you can either make a great show of handing the check to your friend or simply say, “Don’t you want to know if we want to split it or who should take the check?”
  • A woman joins a motorcycle repair forum, only to find surprise and disbelief that a woman can understand how engines work. Other men could talk about how plenty of men do dumb things or plenty of women know mechanics. Or could simply point out that it might be better to listen and evaluate what the person has to say without being a jerk.
  • A Sikh is asked his opinion on Osama Bin Laden by a new acquaintance. I think here a “Why are you asking this?” would probably be appropriate.

Again, I’m not sure this is always the right or best way to handle things. But a lot of times, someone in support who shows that they recognize you as a friend or part of the group can do a lot to combat the feelings of otherness that is created. One of the worst things a friend or someone observing this can do is to stay silent, even if they don’t know how to react. It’s frightening, and sometimes you’ll respond wrong. But at least you tried rather than silently allowed the hurt to be inflicted.

I’m curious on other people’s thoughts on the microagressions. How can they be handled? What can people do about them?

Is Violence worse than Teasing?

There’s a common misconception that teasing, insults, and other abuse is non-violent. At the very least, it is every bit as harmful as a physical attack.

Let’s look at physical violence. Physical violence can cause great harm – for instance, death. Not much can be more severe than death. But let’s put violence that causes death and lifelong physical injury aside for a minute (I’ll come back to this though).

Let’s look at what a physical attack causes. Let’s say a woman is beaten by her husband. She may physically heal, but that’s hardly the full extent of her wounds. Her other wounds – which won’t heal easily – may be depression, low self-esteem, inability to participate in intimate relationships, sleep disturbances, increased illness, heart disease, social withdrawal, inability to trust, and suicidal thoughts and/or attempts. These things aren’t because of the black eye or the broken arm (after all, you can get physically injured without suffering these other effects in sports or other activities). Rather, they are due to the emotional component of the abuse. The physical component, if any, of the abuse is merely one manifestation of the control and power exerted over the victim.

Now, don’t get me wrong: it’s wrong to physically harm your spouse. I don’t mean to minimize the physical aspect at all. I also recognize that some physical abuse causes life-long physical harm – but even abuse that doesn’t is harmful and potentially deadly. In addition to the physical aspect, there is an emotional aspect – and for most victims of physical abuse, the emotional element remains long after the physical wounds heal. And the emotional aspect can still exist even without physical harm.

Growing up, I was sexually molested. I was not physically harmed by this, but that doesn’t make the abuse any less awful. The awful part wasn’t the physical, it was the emotional. It was the feelings of humiliation, worthlessness, undesirability, shame, and powerlessness. Even later, it affected how I perceive and react to loving touch. It is why using a shared bathroom or locker room is nearly impossible for me every day (this has real health effects – try going through a day in society without using a shared bathroom!). But it’s the emotional aspect, the feelings about myself, that were most horrible.

Even worse for me than the sexual abuse was the emotional, non-sexualized, abuse I experienced every day. Once in a while, I also experienced physical abuse. I was burned, hit, choked, tripped, chased, punched and a few other things. But as horrible as those things were – and they were truly horrible, particularly when I thought, “they might actually kill me this time,” I wonder if I would have had an easier time if it was “just” this type of abuse.

It wasn’t just that type of abuse, that’s what was horrible. The above would have been bad enough. It was the constant barrage of hate. It was everything from being the last person picked for the team in PE (the last person picked for every team) to people pointing and laughing at me just for the hell of it. It was the sneaky manipulation by others to get me to say or do something humiliating or incriminating. It was the exclusion from the life others had. It was the constant reminders that I was different, whether that was because of my voice, my laugh, my perceived sexual orientation, my size, my awkwardness, my social naivety, my overloads, or whatever else they picked up on (I’m convinced there was no area of my personhood that was untouched).

That was bad enough. That could push someone to suicide.

Added to that abuse was the response by those who could have stopped it – the adults and the quiet bystanders. Either they approved of the action (awkwardly laughing at what the bullies did, or even just staying quiet and saying nothing) or they just plain responded with complete ineptness.

What was some of the advice? “Think about your friends.” I was supposed to remember that not everyone saw me the way the bullies did, because, for instance my friends liked me. Yes, that’s probably true, if I had friends. Of course admitting I didn’t would have increased the shame – one of the most powerful emotions – even more. Or “stand up for yourself.” That works fine with physical attack, assuming you can do so (I couldn’t), but it is both useless and even counterproductive when dealing with the covert bullying – the bullying designed to produce a reaction, that the outsider would see as Joel overreacting to something and proving he is either crazy, violent, or disruptive while the bullies did “minor” if any infractions. Other times, they asked me to talk it out with my bullies, to see if I misunderstood them. Sure, that works great when you have a beaten down powerless person with less verbal skills dealing with a cunning, verbally advanced bully – it’s not a fair negotiation in the least. Or I got to learn I was even worse than I thought when I was told it was my behavior that could change to stop the bullying. If only I didn’t laugh that way (I did change the way I laughed; it didn’t help), if only I tried asking the bullies to play with them, if only I told them that their statements make me feel unhappy, or whatever other stupid behavior modifications they wanted me to make.

What they didn’t do was equally telling: only rarely did the bully face punishment, but it was never severe or significant (in fact, I was the one nearly expelled and confined to a small room for a week after one incident – the bully was told he actually did good). After all, he only said words, it was Joel who overreacted. And, yes, the only time the bullying was dealt with was those times when I supposedly “overreacted” (hint: it’s not overreaction to react to the 10,000th time someone does something “minor”). It is sad that the only time some people will get heard about their bullying is when they react violently. The outcome of that is never good for anyone.

In other words, the people “in charge” reinforced what the bullies said. I was different and broken. And the bullies were just normal kids that maybe I misinterpreted or misunderstood. After all, bullies are masters of manipulation, appearing as innocent youths doing nothing unusual. Unless there is physical violence. But usually they didn’t leave marks.

Nobody was on my side. Nobody.

Sure, you might say my parents were. And, sure, they were. But they didn’t know what to do and couldn’t stop it. And by the time it got severe, I could no longer talk about it. It was shameful and humiliating to be bullied. Talking about it made it even worse.

So, nobody was on my side. To be on my side, you would have needed to actively help, not teach me how to deal with things, tell me I’m okay, or arrange mediation with the bully. No, if you wanted to be on my side, the only credible currency would have been direct actions by you that addressed the real problem: the evil actions and words of the bully. Not my reactions to them. Not my perceptions. Not my laugh or other traits. No, you needed to deal with the bully’s behavior while simultaneously affirming that I was a victim that didn’t deserve that, but who would see justice done. You lost the minute you started helping me “respond” to bullying. I needed justice, not social skills.

But there was no justice.

That is the problem. And that is what we need to change. The teasing and taunting and manipulation and humiliation is harmful, in most of the same ways physical violence is. It lasts for a lifetime for many people.

And that gets to the next point: it is deadly. Just like physical violence. Too many kids and adults end their lives way too soon because they are just sick of feeling the shame and humiliation, and seeing nobody on their side.

Let me tell these suicides, which people read about without a second glance in the newspaper. Let me tell you a few things.

It wasn’t the victim’s fault. It was the bully’s fault. No, the bully didn’t tie the rope, load the gun, or count out the pills. But the bully did mercilessly demean and take away the victim’s human worth. He did it so incredibly effectively that even the victim believed it.

Second, it’s not a victim’s weakness. I understand why too many people have killed themselves over constant teasing and taunting. I don’t understand why more haven’t – which is probably the bigger question. I see survivors of emotional abuse similar to how I see the one person who walks away with scrapes after the loaded airliner crashes into a fireball killing everyone else on the plane. Somehow, even with all the other good people on that plane dying, someone got through it alive. They probably didn’t do anything differently than the other people on the plane. The cruelties of fate let them survive while the others parished. Suicide is similar – I’m sadly less surprised that people abused kill themselves than I am surprised that some people who are abused don’t. But it’s not weakness that too many die anymore than it’s weakness that people die in the fires of a plane crash.

It’s a miracle that I survived. I don’t know why I survived but others didn’t. I know it isn’t my strength or character, because plenty of those who died had at least as much strength and character.

I want to pause for a second and say that while I used an example from my personal life, this affects others too – not just kids. Too many disabled adults, LGBT adults, homeless, women, and others face emotional abuse at the hands of a few bullies and tons of supposedly good people unwilling to lift a finger to stop the hate.

Finally: It can be stopped. Yes, it can be stopped. All it takes is for us to stop giving bullies the benefit of doubt, stop requiring physical harm before responding, stop standing by cowering in fear of becoming the next target. We have to recognize that what appears to be a mean, but minor, statement by someone may in fact be the tip of the iceberg – both for the victim and the perpetrator. The “relatively innocuous” statement of the bully may be the words that, added to the rest of the victim’s life experience being abused, are now too much for him to carry. And they may be the one statement you saw the bully make, while you didn’t see the thousands of others. So you can’t let “minor” statements slide. You have to respond.

You also have to show the victim you are on their side. If you’re in authority, use your power for good (start by not conveniently excusing yourself of power and claiming to be powerless when you’re not! Many of us have privilege and power in situations even when we’re not directly supervising someone). Second, even if you aren’t in authority, you can stand up. Yes, there’s risk there. But you are making a choice: either the victim’s life – and, yes, we’re talking life – is not as important to you as your own safety and comfort, or you think that the victim isn’t really being abused “too badly” (thus their bullies are doing nothing that is “really” wrong – think about the message this sends for a minute), or you can take a risk and do something – anything – to let the victim know you’re on their side.

I could tell you what a decent human being would do. But, from my personal experience, I know decent human beings – that are willing to actually act – are in very short supply. I do hope you will be one though. You just might save a life.