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Dec. 18th, 2015


I'm on the last day of finals week, finishing up a term paper for a fetal behavior class. My paper is on the neurological development of the premature infant, but along the way, I came up with some interesting ideas that can't go in the paper... so they are going here.

What I noticed, studying fetal development, is this: The brain-stem is responsible for a surprisingly large part of the late-term fetus and newborn infant's behavior. The brain stem is where your cranial nerves connect; these are the nerves that go to your head and face, and they help you move your face, see things, hear things, and taste and smell things. They carry information to the rest of your brain, where it can be processed--but some of the processing is done in the brain stem. And the brain stem sends out signals, too, prompting behavior.

We call it "reflexive behavior" because the signals to move the muscles involved in it come from the brain stem instead of the cerebral cortex. But the cerebral cortex, in a newborn infant, isn't very well-developed yet, and it doesn't have a lot of say in what the infant does, because it takes a while to connect and myelinate all those neurons. So most of the infant's behavior comes from that wonderful, complex brain stem.

What kind of behavior am I talking about here? Lots of things. Sucking; crying; sleeping and waking. Turning toward a noise or a light. Even learning. That's right: The human brainstem is capable of learning. Present the same sound over and over to a late-term fetus or a newborn baby, and the child will habituate and stop reacting to the sound. But when you change the sound to a different pitch, the child begins to react again. That's learning.

Life at this age is simple, and so is behavior. But that's the way it's supposed to be. A person has to build up the basics before those complicated, cortical, conscious behaviors can be initiated. Even in adulthood, most of your thinking is done subconsciously--even if you're autistic and you process more sensory information consciously than most people do, you probably breathe subconsciously.

So... the title of this post is "Anencephaly", and I haven't mentioned that until now. Anencephaly is a birth defect that happens when the neural tube doesn't close--the neural tube is the structure of the embryo, very early on in development, and the top end forms the brain. If the head end of the neural tube doesn't close, then the top of the nervous system doesn't form, and a child is born without a cerebral cortex; there's a head and a face, but the top of the skull, and the part of the brain that ought to be inside the top of the skulll, is missing. Babies with anencephaly, if they survive birth, have a life expectancy of hours to days. Exceptional cases have survived for weeks. Children with hydranencephaly (a milder version of anencephaly involving a closed skull, the cerebral cortex replaced with cerebrospinal fluid, and often some small portions of the brain remaining and functional) have survived for years.

I've read a few stories from mothers of anencephalic babies who carried to term and spent that short time with their babies, whether minutes or weeks, and they're not what you'd expect. The tragedy of losing a child is there, and that's not surprising--but these anencephalic infants don't behave at all like what you would expect. Their mothers describe them waking, sleeping, sucking on a bottle, grimacing, responding to sound, lifting their heads. They kick their legs and wave their arms, quiet when they hear their mothers' voices, and respond to human touch.

All that with just a brain stem.

I used to think that it was mother's love that made these grieving families describe their anencephalic babies' behavior as being so complex, but now, after I've studied embryology, I believe their accounts. "Just a brain stem" is a pretty odd way to put it, once you know what a brain stem is. It's a very complex structure, and lots of our thinking takes place there. When we're very, very young--fetuses, newborns--most of our thinking takes place there. The brain stem forms first, matures first, and serves us well while our cerebral cortex develops. Babies with just brain stems can't live to grow up--without the cortex, their breathing eventually becomes disorganized; and were they to be maintained on a ventilator, their health would eventually fail--but they can behave very much like any other baby.

Knowing that, it seems very sad to me that doctors, when giving a diagnosis of "anencephaly", often imply to their patients that their baby is not really a baby because most of the brain has not developed. They recommend termination, shortening an already tragically short life, as though the simple existence of a newborn with only a brain stem were not worth experiencing. Except... at that age, a typical newborn's cerebral cortex isn't actually doing that much work yet. The cerebral cortex is the difference between life and death, and the seat of consciousness and what will be, about eighteen months later, a sense of self--but a lot of the typical newborn's behavior is still reflexive. All of that, the anencephalic newborn will also have.

Anencephaly is used as an extreme example of disability, and when it's used, the speaker seems to assume that anybody would agree that a life with only a brain stem is not worth living. It's used to introduce the idea that the complexity of one's cognitive experiences can be used to determine the value of one's life. Extended to slightly less severe disability, what if a person's brain is impaired to the point that they will never reach that 18-month-old's concept of "That's me in the mirror"; are their lives worth living? What about those who will never use complex language, will never learn to read, will never graduate from high school... will never... will never... ...

The fallacy here is that you can ever judge a person's life by how good they are at thinking. A brain stem isn't as complex as a cerebral cortex, but it's still something, and most disabled people have much more than that. Maybe doctors look down on those with intellectual disabilities because doctors themselves have to be so intelligent and have been taught, for decades, to value intelligence. They've got their heads in clouds of calculus and anatomy, and they don't know enough theory of mind to turn themselves around and think about what it might be like to look out of the eyes of someone who values things that don't have much to do with being smart.

I think there are a lot of parents out there who've been cheated out of those few, short, precious minutes or hours with an anencephalic baby they were told wasn't worth getting to know. And that generalizes to disability, as a whole. There are a lot of parents who have cheated themselves out of loving their real child, because they were too focused on the will-nevers and the child they thought they would have. There are even parents who have killed their disabled child as though the child were a usurper or fairy changeling, not a child at all.

We've got to stop doing this. We've got to stop judging people by what they can't do. If it's possible to marvel at the complexity of the human brain stem and see beauty and humanity in the short life of an an anencephalic infant, shouldn't it be just as possible to celebrate the lives of other disabled children, no matter how severe their impairments might be? To dwell on the "will-nevers" and "can'ts" is to ignore the things that are possible and the child who is real, and really there.

Sep. 24th, 2015

To the Muslims of the World

The other day I looked back over the diaries I kept when I first went to college, and I looked at the entries I made just after 9/11. Much of it was just my writing down what I learned from the news, as I learned it, and talking about how it affected our daily lives; but some of it was oddly prescient. Some excerpts:

September 16, 2001:
"Nationalism--patriotism--is perfectly all right, but when it gets to the point when you hate all other people, you're going way too far. That's what got the Muslims in America scared. Here--in the land of religious freedom--we're persecuting Muslims? Shame on you, America!"

September 26, 2001:
"They have killed an Egyptian Christian in L.A. just because he was middle-eastern looking... As a student of German history, I am worried. Okay, here's the scenario. A newly-elected president, elected by a small majority, escapes a terrorist attack meant for him and rallies the people to his side. Bush? Yes. Hitler? Also yes.... When a popular leader takes control during a crisis, promising security, often people are willing to give up rights for security, give the leader more power than he ought to have, and look the other way when he commits terrible atrocities."

When I wrote this, I was at Pensacola Christian College, the ultra-conservative Florida unaccredited college I had enrolled in primarily because I didn't know any better and was, back then, quite conservative myself. I had turned 18 the summer before, and three months later was to leave the school; but I was still in the extremely censored environment of PCC. I had no access to "liberal propaganda" of any sort--even the news was censored there. But unlike most of my fellow students, I had the benefit of being, at that time, a German citizen interested enough in the history of my birth country to want to understand how and why the Holocaust had happened, and how average Germans let it happen. I saw the parallels.

We staged invasions, sent soldiers, created chaos. Most of it was comfortably far away from home. The Middle East is in chaos. And now some politicians, looking for presidential nominations, are tacitly agreeing when people say we ought to "get rid of" Muslims.

This makes me very sad. I've been naturalized now, and America is my home. I follow the international news, and I feel helpless; but I also feel ashamed of my country. We've done things that were wrong. Not just mistakes or screw-ups, but plain wrong. Evil. And the average American didn't really notice.

At least in the US, a relatively large number of people speak out against it. The abuses at Guantanamo Bay became a scandal rather than par for the course. People are used to democracy here; in Germany, they had only a few decades' experience with it. I have hope that America will shed its xenophobia, at least to the extent of not killing people for being different from ourselves; I have hope that some day we will promote true religious freedom and see ourselves as equals with the rest of the world, not as superiors.

But if we don't, if it gets worse, then I won't be one of the people averting their eyes while cattle-cars pass through my town. I can't; I couldn't bear it. Right now, all I can do is vote for those politicians who have good track records in international diplomacy and reasonable skill at understanding other peoples' perspectives. I'm still depending on democracy to turn us back around to doing the right thing. But if democracy fails, then serving my country means I can't stand by and do nothing.

To my Muslim friends, neighbors, fellow students, and fellow citizens of Earth:
I see you out there, unapologetically Muslim. I see your courage, making yourselves known, letting us see that you exist and that you are everyday people. And I get the message: You are different from me, but you are as human as I am, and the differences do not change your rights or your value. When you wear a headscarf and attend the same classes I do, your differences become familiar. The awkwardness diminishes. You become just another student. But initially you had to take a risk to openly identify yourselves as Muslims, and I applaud you.

I'm a Christian, and in that respect I'm part of the American majority, so I don't really know what it's like to be part of a minority religion. My experiences of being the target of prejudice mostly come from being disabled and deciding that, despite autistic people being mistreated for being autistic, I wasn't going to try to hide my autism.

That's not particularly similar to what it must be like to be a Muslim in a majority-Christian country, but it did give me some ideas to start with. There are some universals that apply to everyone--the right to hold our own beliefs, practice our faith, and be true to ourselves. Both Christians and Muslims worship the God of Abraham, though we have different ideas about who he is. I think you're wrong, and you think I'm wrong; but acknowledging those differences, in values and lifestyle and faith, doesn't mean I am going to forget about the fact that God loves you every bit as much as anyone else, and expects me to love you every bit as much as I would love a Christian with the exact same set of beliefs that I hold. You are fellow humans, and that is all that really matters. You are infinitely valuable.

In the past, Muslims and Christians have killed each other, but that's not you, and it's not me. We're only people. We aren't responsible for that animosity any more than I'm responsible for Auschwitz because I'm German. But I have the responsibility to learn from Germany, to care about people who are in other countries, who have different faiths, and whom our government has branded "terrorists" and "terrorist sympathizers". Well, if I'm not a Nazi, then I don't think you're a terrorist. You're mostly trying to get on with your lives, just like I am. We can reject all of that and see in each others' eyes simply another human being; we can replace hate with curiosity, xenophobia with an honest desire to understand how the other person sees the world.

If it really comes down to it, if you need help, I'll be there for you. So will many, many other Americans. I'm not the only one who is disturbed at the way our government has been treating anyone who seems "foreign" (even those who have been American citizens for generations!). If you are mistreated, we'll stand up against it; if you are excluded, we'll refuse to participate. When we help each other, help our neighbors and friends and co-workers and fellow students, you'll be included in that group; we know you'll help us when we need it. We won't let them divide our communities into little chunks fighting against each other. We're neighbors--in the biblical sense, even if we don't live next door. We know you're different, and we might feel awkward, maybe even accidentally insult you; but beyond that awkwardness of interacting with those who are different is the firm belief that they are human and have rights and are worth protecting.

Point being: If they want to mess with you, they've got to go through me first. And through everybody else who agrees with me, which is an awful lot of people. You're not alone.

Sep. 15th, 2015

ISIS joins the disability-hate party

Reading the news today... looks like ISIS has just randomly executed 15 people.

Nothing new, you say? ISIS does that all the time, you say? Yes. Yes, they do. But these particular 15 people were disabled ISIS operatives... and ISIS killed them to spare themselves the expense of taking care of them.

They called it a "mercy killing". They wanted to get rid of the "financial burden".

Sound familiar?

Maybe the same words that have come out of the mouths of quite a few so-called "parents" who "mercy-killed" their disabled children?

Honestly, I'm not so much worried about fifteen fewer ISIS operatives out there; if someone has to be summarily executed, at least these were the kind of guys who wouldn't mind strapping bombs to themselves and walking into a crowded bus.

But let's think about this: If ISIS thinks something is a good idea, shouldn't we be questioning why we're sentencing people who do the same thing to, like, five years in the Hilton Jail? (Gigi Jordan, anyone?)

This isn't the first time ISIS has done something like this; they've used mentally disabled people as suicide-bombers. At one point they even shot a fellow with a mental illness, basically because he looked at them funny.

Oh, wait, our cops have done that, too.

Anyway, point being... can we maybe treat disabled people at least a little better than the way they're treated by the world's most notorious terrorist army? Too much to ask?

Sep. 9th, 2015

Don't Ask, Don't Tell

This actually isn't another GLBTQA post. Hehe. I know, surprising. But it is about being in the closet. Read on.

Some of the science/math students at Wright State University got to talk to Dr. Temple Grandin today at the office of disability services. We were all invited because we were disabled and Dr. Grandin wanted to meet us before she gave an address at the campus stadium.

What's she like in person? She's pretty much an outspoken nerd. You won't find anything unusual about her if you've met people with ASDs before; she's got her specialist subjects, very strong opinions, and you can't get a word in edgewise when you talk to her. She reminds me of some of the college professors I've had (that's a compliment; she reminds me of the ones who knew their stuff, whom you could count on to go in-depth if you asked questions). Guess she was in professor mode today.

I didn't agree with everything she said, which I expected because I don't agree with what she writes about cats (they are much more varied--but then, she's into prey, not predators).

So, the good:
She gave us a useful bit of advice, which is this: When seeking employment, focus on your skills. Let them know what you can do. After all, that's what you're being hired for. She especially advocated building a portfolio of your work, and boy do I agree with that. If I could just be hired for what I can do--if I could drop the interview and just show them how I can make your data give up its secrets or design an airtight experiment--then I could be sure of getting the kind of job I want, which is the kind where they pay you to learn.

The bad:
She's from an older generation, and that's at the root of most of the things I disagreed with. When she was a kid, the only way to succeed with autism was to pretend you weren't autistic. Her mom taught her the social rules, even made her host parties. That's how she survived.

Honestly, I kind of admire her for being able to fake NT in a world where autism was so extremely unaccepted as it was back then. I couldn't do it; I know, because I tried and I've got two hospital stays and a recurrent-depression diagnosis to show for it. She must have been very tough. But then, I suppose she didn't feel like she had much of a choice.

One of the fellows in the room was a student with a talent for computer programming. After being advised to sell his skills based on his coding experience, he asked her something along the lines of, "But what do I do about being an Aspie?" (I couldn't quite hear. Auditory processing problems, room full of people. Thankfully you won't have that problem with Dr. Grandin, because she projects very clearly.)

And her response was, "You're a nice-looking young man. You know--don't ask, don't tell, right?"

And we all laughed. Because we knew exactly what she meant. If you have an invisible disability like autism, most people won't ask you why you're stimming or why you're fascinated with feral cats, because it's not polite. And you don't tell them, either. Not if you want a job. Not if you want to be treated like a normal person.

Another student was a young lady who likes to write, had written a lot of poetry, and kept a blog. Her disability is visible; she walked into the room on crutches. Dr. Grandin remarked, to her, that she should focus on the Internet--because on the Internet, no one would know she was disabled. No one would see the crutches.

Is it really like that? Do we really have to avoid being open about our disabilities in order to get by? Or has it changed enough that, unlike Dr. Grandin back then, we can be open about it and still be considered by our skills?

Some of us in that room couldn't have hidden our disabilities, no matter what we tried. There are people with highly visible disabilities going to WSU along with everyone else, and not all of them could just pretend to be non-disabled on the Internet. And then there are people like me, who can pretend for short amounts of time, but for whom it's exhausting and will eventually lead to burnout, whether that's physical or mental exhaustion. There are people whose disabilities are a large part of their identities--autistics and Deaf people, especially, but also people with other disabilities, including primarily-physical ones--who feel that to hide that part of who we are would be to betray ourselves. I suppose Dr. Grandin would tell the people who couldn't hide to de-emphasize their disability, to focus on their skills.

Ironically, part of Dr. Grandin's fame comes precisely from being autistic. If she had kept her secret entirely, if no one had ever known that she had autism, she would still be known as a particularly talented animal behaviorist and college professor, but her name wouldn't be a household word. No one would know that part of her talent comes from being autistic.

I wonder if she regrets going public, if she would rather not be so well-known and have to give so many of her talks about autism instead of about animals. I've already made my choice about being known as autistic--it's all over the Internet. I made the choice to 'come out' to the world at large when I was first interviewed by NPR; I wanted to tell people that being autistic was not something anyone should be ashamed of or have to hide. I wanted to be known as an autistic person because I don't like the idea of hiding my autism and leaving all the people who can't hide it to be looked down on.

I hope we don't have to follow "don't ask, don't tell" when it comes to disability. I can't stay in the closet; the ceiling's too low in there, and I can't stand up tall. I want the world to see me as I really am.

Sep. 8th, 2015

God Is Love

I was walking home from class today, and on the quad there was a preacher.

Before I was close enough to make out his words, I thought, Huh. I suppose he'll be going "Jesus saves" and fire-and-brimstone, which is old-fashioned and simplistic, but not too bad; besides which, lots of these students haven't been to church before and maybe they haven't heard it laid out clear...

But no. As I approached closer, I saw he had signs that said that "adulterers, homosexuals, lesbians, pedophiles" would go to hell... And he wasn't saying Jesus saves; he was saying Jesus hates. He was talking about a billion years in hell.

I seem to recall another situation in which someone was demonizing adultery, and another someone wrote on the ground, and whatever he wrote, it made them stop harassing her and leave, unwilling to throw the first stone.

I wanted to write on the ground, myself. I wanted to write, "God is love," and forgiveness, and healing; and I wanted to talk about how you can't get self-righteous and condemn other people because then you'll just end up becoming prideful and hateful and worse than anybody you condemn. I wanted to write how Jesus didn't mind socializing with prostitutes, because they're people same as any other person. I wanted to write about how knowing God is something you do because you want to become the person you were meant to be, because you want to learn how to truly love others. And, a bit less righteously, I wanted to comment on the likely miniscule size of that street preacher's... private parts. Because I'm just spiteful like that.

But I didn't have any sidewalk chalk... And I don't think he'd have listened to me. I don't think he'd have cared if it had been Jesus himself with the sidewalk chalk.

It made me angry at first. Now I'm just... sad. My faith is being used to hurt people. It's like someone is beating a child with a crucifix, only not so literally. And the child is going to grow up to think God really hates them.

Well--I don't know how many people still read this blog, but if you are reading this, let me contradict that fellow with his signs and his yelling and say God loves you, and will always, and has always; and it doesn't matter who you are. God just wants you to love others. Love God and love others, and all the rest follows naturally. You don't have to qualify for God's love; none of us are perfect, nor can we ever be, and he loves us anyway. Just for being human.

Anyway... I'm going to go and watch a kitten cam right now. On days like this, a person needs kittens.

Aug. 29th, 2015

On Writing Autistic Characters

The first autistic character I ever read about was a girl named Susan in a children's book. She was a piano savant who could play anything she had heard, even if only once, though it was plain she did not understand the music; when she heard a record, she copied the skips of the record player too. She didn't communicate, didn't have friends. At the end of the story, Susan was sent to an institution, and everyone agreed that it was in her best interest. (Anne M. Martin, The Secret of Susan.)

It was published writing. It was also very bad writing--and not just because autism wasn't depicted in a realistic fashion. The biggest problem was that Susan herself was not a well-written character. She was not, in fact, a character at all; she was a plot device. She did not change or learn; she reacted to events as though pre-programmed with her responses. She was not human.

So let's talk about this. Let's talk about good writing, and about autism, and about why characters like Susan need thorough re-working.

1. Your character is not a walking blob of autism.
When you write a neurotypical character, you have to write them as a complete person. That doesn't mean giving every single minor character a complete backstory, but it does mean that what your readers see of your characters should be parts that fit into the larger picture of a whole person. Autism is a part of that picture for your autistic characters, but it does not make up the entirety of that character. If you take a list of diagnostic criteria and use that list as the description of your character, you will have a computer program, not a person. In the real world, autistic people don't act like a list of diagnostic criteria; they act like people. Most of their traits are traits not on the diagnostic description, and most autistics will be exceptions to the rule on one or more traits. For example, there are autistic people who have wonderful imaginations, who speak fluently, who are extroverts, who are popular, or who really, really suck at math.

2. Your character makes their own decisions.
When a neurotypical character takes an action or makes a decision, there are multiple causal factors. What they do is up to them, and it's determined by their personality, by their mood, by their relationships, by the things they know. That should also be true for autistic characters. If an autistic character does something, it should never be explained that they did this thing "because they have autism". That's about as worthless a description as saying I did something because I'm an American. Unless it's something explicitly based on the diagnosis, such as, "She goes to a special school because she has autism", you'd better have a reason for your character to do things.

If your five-year-old autistic character has a meltdown, it's not "because he has autism"; it's "because his mother made him wear that itchy sweater on a day when he was cranky and hadn't gotten enough sleep". If your autistic scientist snaps at a co-worker, it's not "because she's autistic", it's "because she was preoccupied with her work and irritated to be jolted out of her concentration". If your autistic character wanders, it's because they've got somewhere to escape from or somewhere to go. If your autistic character rocks, flaps their hands, taps their feet, chews on pencils, or fidgets with a Rubik's cube, they do those things for a reason. And if you don't know why, then you need to go back to the drawing board, because you don't know your character well enough.

3. Autism affects, but does not determine, everything in your character's life.
Autism affects everything about a person because it is part of what makes them who they are. At the same time, autism does not create some kind of pre-written script which your character will follow. Think of autism as a trait along the lines of culture, gender, or nationality--it touches every life experience, but it does not prescribe life experiences. Your story about an autistic person should be about an autistic person who is also many other things--a part of their family, their community, their nation, their race, or even their species and home planet. Think about this: How does autism affect the way they see their role in their families? Their careers? Their country? And how do those things affect their perspective on their autism? And, most importantly, how does their personality mesh with all of that? Which brings me to:

4. They have a unique personality.
If you can write down "Autistic" as your character's main personality trait, you're doing it wrong. Autistic people are too diverse for "autistic" to be a valid personality descriptor to begin with; and besides, it's a cognitive trait, not a personality trait. Autistic people are more likely to be introverted than average, it's true, but there are extroverts, too. Some are angry and brash, others shy, others confident. Some are know-it-alls, others unsure of themselves. Some would happily deliver a beating if they thought the other person had it coming; others can't conceive of the thought of violence. They have diverse interests, goals, preferences, and desires. You need to do some serious thinking if you cannot write about who your character is without using the world "autistic" or describing autism.

5. Savant skills and splinter skills: Use with caution.
So you want to give your character a savant skill. Why? Because they're autistic and you associate that with autism? Because you think it's cool? Because it turns them into a budget superhero?

Before you give your autistic character savant skills or splinter skills, or even unusually strong talents, think about why you're doing it. What purpose do these talents serve? Will they serve to further the story? Or are you just randomly tacking them on without any real reason to do so? Even worse, are you tacking them on so that you can talk about the savant skill rather than the person? If your autistic character has devolved into a display case for their savant syndrome, scrap it and start over.

About ten percent of autistics have some kind of splinter skill, and they're usually not all that flashy. Not too many of us are prodigious savants; for most of us, a splinter skill is more like a knack or a very specific skill that we learned with unusual ease. If your autistic character has a savant skill, think about what that means to them: What does your character think of their talent? Do they enjoy it? Do they show off? Or do they hide it for fear of seeming odd? How aware are they that others can't do what they do without a lot of practice? Does it help them in their daily life, at work, at school, or dealing with other people? Might they use it as an escape from the hassles of life, or a springboard for a career? Does it give them a perspective that other people don't have?

6. Autistic characters are not to be used as a plot device unaffected by the plot.
All too often, I have seen autistic characters used as a source of conflict. An autistic child creates problems for their family. An autistic witness creates problems for crime-scene investigators. An autistic person sits at the center of the conflict, unmoving and uninvolved, while their presence diverts the story; but the story does not affect them in return.

Writing a love story between a single mom with an autistic child and her potential dream guy, and the autistic child is the problem they have to overcome to get together? That's a bad idea. That autistic child has their own perspective on things. Suddenly Mom is dating; there's a new man around. What now? The child will have their own thoughts on the matter. Or that autistic witness who can't communicate very well--they just witnessed a crime, probably a murder because that's what writers like to write about; a person doesn't walk away from that unchanged. Your autistic character is not a black box from which the investigator must extract information. They have their own story.

7. You can't group real autistic people into "Smart" and "Stupid" types.
Fictional autistics come in roughly two categories: The "smart" autistics, who are stiff and formal and genius at something, usually something scientific, but who take things literally to the point of obtuseness, and the "stupid" autistics, who need lots of care and have a splinter skill they don't quite understand themselves and occasionally show that they're more perceptive than you think. But autistics are more than Spock and Rain Man, and you can't stuff them into those boxes. Each person has their own particular set of skills and talents.

8. Their morality is human morality.
An autistic person is no more likely than the average human to be either a saint or a sociopath. Autistic people have trouble understanding and communicating emotion, but they have as much compassion as the general population, and their ethical decision-making is very much like that of any other human being. If there is an exception, it is that autistic people find external, specific rules easier to follow and take longer to figure out when rules can be broken; for example, your autistic character might drive at the speed limit even when most cars are going ten miles an hour above it. But even then, some autistic people are rule-breakers, and many, especially adults, have their own systems of values that they follow regardless of the law or social convention. Your autistic character will care about the same things most people care about--the well-being of their family, their loved ones, their friends, their country, about fellow human beings, animals, life in general, the world in general; about knowledge, cultural traditions, religious beliefs. Their atypical cognitive style may lead them to act on those ideas in their own unique ways--but their beliefs run the same human gamut as non-autistic people's do.

9. Your autistic character has a future.
Many of the fictional autistic characters I've encountered end up in one of three ways: Cured, institutionalized, or dead. Something about the writer's need to tie together loose plot threads seems to demand that autistic characters' autism be resolved somehow, that an autistic character cannot simply go on living their life, being autistic. Ditch that. Your autistic character does not have to be cured, nor do they have to die, nor do you have to "send them away" somewhere out of sight and out of mind.

10. All other rules that apply to good writing, still apply.
Why is it that people think that once you're writing about a disabled character, you can ignore things like avoiding melodrama, providing complex motivations for your characters, or remembering that everyone is the main character of their own story? If you find yourself doing this, back away from the novelty of writing about an autistic character and think about your character's preferences, dreams, goals, pastimes; think about the people they love, the places they call home, and their image of who they are. If you are writing about an autistic character, you are by definition writing about a person. "Autistic" implies "person", just like "woman" or "American" does. All of those human universals still apply.

Aug. 24th, 2015

Social justice

I’ve started avoiding social justice type discussions lately. I don’t know how to say all the right things and how to avoid all the wrong implications. I take things literally, like I might say that “all lives matter” is a true statement, because they do matter; and then people think I’m a racist and don't care that black people get killed for no good reason much more often than white people do. And wish I could do something to help but don't know what to do because everybody who talks about it is just talking about words and saying the right words and... what I want to know is, how do I keep people from dying?

It’s hard being autistic and wanting to stick with facts, but also wanting to love people and change the world so that everyone is allowed in it. Because no matter what I say, I can never memorize all the social rules, and then people think I hate them, or hate some group of people who don’t deserve it. In reality I’ve never hated anybody in my life, not even the people who hurt me or hurt innocent people, because I just don’t know how to hate people. But people wouldn’t believe me if I said that, because I also said the wrong words, and words matter.

I’ll ignore “social justice” altogether and just love people. I don't care who you are or what you've done or what category you're in; I love you. All of you. Forever. Whoever you are. That's just... it.

Sorry. I'm tired. I wish things weren't so complicated.

Aug. 13th, 2015

The Power of Helping

You ever thought about how much power you have when you're helping someone? I have.

I do volunteer work, when I can, when I have the spoons left over from taking care of myself and my cats. And every time I help someone, this is what I notice: By helping them, I am taking on a role that gives me power over them.

I used to volunteer at a food pantry. I'd been a client in the past, and when I had free time, I came back as a volunteer, taking down information from voice mail and stocking food. I watched the people who came into the food pantry, and the way they acted was very much like a frightened cat--the don't-hurt-me pose, down low to the ground, soft voice as though they were afraid to assert themselves, or ashamed, or thought they had to be subservient in order to be helped. I don't know; I'm better with cats; but if these people had been cats, they'd have been feral cats sneaking up to a feeding station for the first time.

As a volunteer at the food pantry, I had the power, if I wanted to use it, to dictate what these people had to eat. Beans instead of corn? Chicken nuggets instead of leftover pizza? My choice, not theirs. And socially, I'm allowed to do that. I would probably have been able to, completely groundlessly, accuse someone of not needing our help and turn them away, if I had wanted to. And most of these clients are older than me, with more life experience; many are parents. If I hadn't been helping them, they would have had some degree of power over me.

Incidentally, when you donate to a food pantry, I highly recommend that at least some of the food you donate should be morale-booster type food--things that simply taste nice and make people feel good, things like hot chocolate, parmesan cheese, tea or coffee, candies, the good jelly instead of the cheap grape stuff, the canned fruit instead of your leftover water chestnuts, etc. Having used a food pantry in the past, I can assure you that having something good in that paper bag can really make your day, and if there's anyone who needs their day made, it's someone who's short on food. Also ask the pantry if they give out toiletries or kitchen supplies; can openers are particularly useful and there's almost no one who can't use a bottle of shampoo. Also ask if they need baby items; some pantries are overflowing with baby items and others never seem to have enough; if yours is the latter sort, ask which size diapers they're lowest on beforehand. I don't know how many times I've stared in dismay at a huge pile of size 3 next to two lonely diapers in size 2, or vice versa, and wondered how annoying it would be to diaper your kid a size too big or small.

Back to the power thing. In case you're wondering, I never turned anyone away, nor saw any other worker doing so. Maybe one in two or three hundred clients probably didn't need the food we were giving out, but even those people we didn't send away because, well, it's food. Giving someone food, whether or not they need it, is not going to hurt them or anyone else. And can you imagine if we'd sent someone away, mistakenly thinking that they didn't need the food, when they actually did? Hunger is a real thing, people. I don't wish it on anyone. I'd rather be swindled one in two hundred times than leave someone hungry one in two thousand times.

It's not just volunteer work that gives you power over people. All kinds of helping does, even if you're paid for it, even if you're helping family. Now that I'm working on the ASAN Disability Day of Mourning list, I'm acutely aware of the kind of power caregivers have over disabled people in their charge. And parents over children, disabled or not. Cops over... well, pretty much anyone who isn't a cop. And when that power gets abused, people get hurt. People live in fear and pain, desperately trying to stay alive, knowing that their abuser is seen as a hero for "helping" them. They have very little recourse when they are hurt by someone whose power over them comes from their role as a helper.

I asked my aide, Emily, whether she was aware of that power gap between her and me, and she replied, yes. She's acutely aware of it. She knows she has power and she refuses to abuse it. I don't know if I was reading her right, but I almost wonder whether she's a tiny bit afraid of how much power people like her have over people like me, if they choose to take it. Emily is a rather good aide and she likes her job; most of her clients are younger than me, but she has other adult clients and some of them aren't as good at communicating as I am. If she wanted to, Emily could really hurt people and probably get away with it. But she doesn't, not because something's keeping her from doing it, but because she doesn't want to. I think she just likes her clients because she likes people and she sees her clients as people. That's the way most of the good ones seem to think; they recognize their clients as people.

But swap Emily out with someone who's narcissistic, psychopathic, or just simply doesn't care... Well. I read about the result of that all the time. Some of it ends up on the memorial pages.

Aug. 11th, 2015

Gender, Sex, and Sexuality for Multi-Species Stories

So you're writing about a species where gender, sex, or sexual orientation are a little more... complicated than for humans?

Here's my terminology guide for sci-fi, fantasy, and non-human gender and sexual orientation.

Biological Sexes:

Female: The gender that lays eggs or produces the egg cell to be fertilized.

Male: The gender that fertilizes eggs.

Hermaphrodite: An organism with the sexual organs of both genders. Usually refers to entire species, and refers to the typical state of affairs within these species. Hermaphroditic organisms may or may not be able to reproduce on their own, but when engaging in sexual reproduction they are able to either impregnate or be impregnated. Use this word for non-human species that fit this description. Many plants and some animals are hermaphrodites. Gender and sexual orientation may or may not be meaningless to hermaphroditic species; some adopt gender labels out of convenience or preference. Sequential hermaphrodites, which switch from one biological sex to the other during their lifetimes, may or may not switch from one gender identity to the other as well.

Intersex: An atypical condition found in species with two or more genders; refers to those individuals which cannot easily be categorized, physically, as one gender or the other. May be attracted to either gender, both, all, or none; may have any gender identity. Ex: Intersexed person, gender identity male, attracted to females, would be heterosexual; if gender identity is female, then homosexual. For human intersexed people, the term "hermaphrodite" is near-always incorrect and usually considered offensive because Earth-humans are familiar with hermaphrodites only in terms of relatively simple animals; calling an intersex human a "hermaphrodite" is equivalent to calling them, for example, a slug. Exceptions may exist for genetically engineered humans which fit the biological definition of hermaphrodites in sci-fi continua.

Asexual (Biology): The condition of having no gender. Refers to entire species; for example, amoebas. May reproduce by fission, spores, etc. Gender identity and sexual orientation are probably meaningless to these species; some adopt gender labels out of convenience or preference. Since they do not reproduce sexually, these creatures may not have a sexual orientation, or may be asexual in terms of sexual orientation.

Third, fourth, etc. genders: Your species may have multiple genders, each with a different role. You will have to name these yourself. Some species have an infertile third gender to care for young (ex., worker bees).

Gender Identities:

Social, personality-based, brain-based gender. Distinct from biological sex but usually consistent with it.

Agender; nongender; gender-neutral; androgynous: Some of the many words used to describe people who identify as having no gender. Applies to most creatures who are biologically asexual and many who are hermaphroditic, as well as some individuals from species with sexes. May be attracted to one or more genders, all, or none.

Genderqueer: As a general term, non-binary people in a species with a binary (or trinary, etc.) gender divide. May be attracted to one or more genders, all, or none. As a specific term, unlike agender (etc.) individuals, genderqueer individuals may identify as one gender or another at different times during their lifetime, switching genders. Sequential hermaphrodites may or may not be described as genderqueer.

Transgender: Someone with a biological sex that does not match their gender identity. Both the biological sex and the gender identity can be anything, including neutrois (physically non-gendered), as well as the binary (trinary, etc.) genders. Use their gender identity to describe their sexual orientation; for example, someone with a female gender identity, attracted to females, is homosexual even if their biological sex is male. Depending on the species, this may be a very typical condition or a very unusual one.

Sexual Orientations:

Homosexual/Heterosexual: Attracted to one's own/the opposite gender. This designation can only apply to people who have a gender identity, and usually in the context of a species with two main gender categories.

Asexual (Orientation): A sexual orientation found among species which reproduce sexually; lack of sexual attraction to all genders. Asexual individuals can identify as any gender or none at all. They may desire platonic romance and have gender preferences for partners, or not desire platonic romance at all. Most biologically asexual creatures can be described as asexual in orientation as well, though their species probably does not have a distinct concept of "asexual" unless they have been in contact with species which are not biologically asexual.

Bisexual: An individual, usually from a species which has genders, attracted to two of those genders. In species with three or more genders, "trisexual", etc., may be an appropriate category (but must be differentiated from the old "I'm trisexual; I'll try anything once" joke).

Pansexual: An individual attracted to other individuals regardless of gender. Different from bisexual in that it encompasses those who do not fit into the two genders that bisexual people are attracted to. Will still have preferences regarding age, personality, species, etc.

Androsexual; Androphilic: Attracted to males. Different from "Straight female" or "Gay male" in that it can be used to describe those who are neither female nor male, or are both.

Gynosexual; Gynophilic: Attracted to females; useful for describing those who are neither/both female and/nor male.

Xenosexual: Someone attracted to those from a different species from their own. Generally unusual, but some species are xenosexual by default (cf. Mass Effect Asari). Usually also has preferences regarding gender, age, etc., and may be attracted to one species, some, or all. Assumes sapient (able to consent) species only.

OmnisexualJack Harkness.

Sex Drives, Reproduction, and Families

Aromantic: An individual that does not experience romance in connection with their sex drive. For some species, this is the default situation; sex occurs without romance, as an instinct, a ritual, or a biological need, and there is little or no attachment between sexual partners. A good example in the animal kingdom: Cats. Cats go into heat, call for toms, and mate; then the toms have nothing more to do with them unless they were friends beforehand. Cats form friendly attachments, but not romantic ones. Species that are aromantic or tend to be aromantic may have a strong estrus cycle that forces them to reproduce as a biological imperative (ex., Vulcans). Some aromantic species may reproduce by spores, eggs, etc., and may never meet the other parent. Most aromantic individuals are capable of love; it just doesn't have anything to do with sex.

Monogamous: Attached to one other individual. Monogamy may be social (an exclusive pair-bond), sexual (exclusive sexual relationship), or both (a social and sexual pair-bond). It may be temporary (one breeding season), semi-permanent (as with humans; can be terminated by death, divorce, or "falling out of love") or permanent (Tolkien's elves, for example; bond for life upon their first sexual contact and will not re-marry if one dies).

Polyamorous: Just what it sounds like--loving more than one other person at once. Some species may have this as the norm; for example, bonobos (the classic example). Polyamory may involve the formation of "group marriage" style bonded groups (three or more people in an exclusive sexual or social group), or it may involve romantic pair-bonds with multiple people who are not also bonded with each other. Distinct from aromantic sexuality in that the bonds are emotional and often familial.

Hope that helps...
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Jul. 27th, 2015

Divide and Conquer

I really wish autistic people who can talk and live on their own would stop trying to distance themselves from the autistic people who can't do those things... It frustrates me that they're still kind of buying into the idea that "I'm autistic but it's okay because I'm smart"... because that buys into the idea of ranking people's worth by their abilities.

I want autism rights to stop emphasizing our talents or our disabilities, and start talking about what we want, what we need, what our lives are really like. It just makes me really sad when I hear somebody say, "It's okay that I'm autistic, but I wouldn't want to be one of Those People who needs diapers and has intellectual disability and needs a group home; in fact, they're probably not really autistic at all because autistic people are smart"... It just makes me sad.

We can't shut them away. We need to stick together with those who can't communicate or who need a lot of help. We need to defeat the fear-pity-hate thing altogether instead of trying to wiggle away from it and leaving the "low-functioning people" to deal with that stigma alone.

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