We've Emigrated!

I've had a lot of fun here on Livejournal, met a lot of wonderful people, written a lot of bitchy posts and hopefully a few insightful ones.

Unfortunately, recent events have made it necessary for me to move my blog from LJ.

I am now located at:

https://reportsfromaresidentalien.wordpress.com/

Join me there!

No, seriously, please do. Having to move has made me a bit more appreciative of how nice it is when you have a blog where you know you can say what you mean; so hopefully I'll have useful things to say again now. I'm still taking Q&As; being asked questions seems to spark a good deal of creativity.

This is the first time I've moved my blog, so let's hope this works properly. See you there!

Q&A: In which I feed the trolls and explain why I am ugly.

Q: Why are disabled people so ugly?

A: I feel like I ought to be insulted that you asked this question, which presumes that disabled people are indeed ugly, because in general, we’re not; we’re just ordinary-looking, some not so good-looking, some gorgeous. It’s down to luck whether we look pretty or not—well, luck and a talent for style and grooming.

I’m one of your “ugly” disabled people.

This is a photo of me at a recent protest against repealing the Affordable Care Act; the sign says “Don’t Let Us Die”. (Disabled people like myself are at risk of dying if we can’t get health care, and that’s not an overstatement.) We’re wearing party hats because the ACA turned seven years old, so we’re holding a “birthday party”. This is a candid photo taken by a news reporter, so it's not a posed picture.

Let’s analyze this. Why do I look “ugly” in this picture?


  • Loose clothing. I have autism and related sensory processing disorder, which means I wear clothing about two sizes too big. Anything tight gets on my nerves, and takes energy I could be using to deal with something else.

  • Buzz cut. The hairstyle is all about comfort. I could look “prettier” if I had long hair, but I cut it off because otherwise it gets in the way, and because I have to take extra energy to take care of long hair. So it goes.

  • Big, clunky wrap-around sunglasses. Not a highly stylish choice, but absolutely necessary for my sanity. My vision is very sensitive, and I’d get a migraine if I didn’t wear sunglasses outdoors, even on rainy days.

  • No make-up. I could look “prettier” if I wore some, but having stuff smeared on my face would take up energy I don’t have. Are we sensing a theme here?

  • Overweight. The clothes may make me look fatter than I am, but I’m still carrying about fifty extra pounds. This is unrelated to my disability, other than that because I am low-income, I am unable to afford the expensive, nutrient-dense food that would give me the nutrition I need with fewer calories. Because of my disability, it’s hard for me to cook for myself; I eat mostly prepared food, which can be quite low on nutrition.

  • Clothing. The newest piece of clothing I’m wearing is more than five years old; this is down to my low income. Due to my disability, I wear a “uniform” of black pants and polo shirt every day, which helps save energy.

  • Androgynous, but not good at fashion. I don’t look stereotypically feminine, probably because I’m not really female, nor really male. This is a sociocultural thing, a gender identity, that has little to do with disability; but because of my disability, I am unable to spend money or time on perfecting an androgynous style that “looks good”. Suits cost money. Tailored anything costs money. And all of that outfit design would take a lot of energy.

Why am I so focused on saving energy? Because I need it to do things like going to to that protest. If you’re disabled, you’re on an energy budget; you have only so much of it, and if you go over your budget, the debt catches up to you in a massive way—physical illness, breakdowns, or just plain being unable to care for yourself for a while. And if I want to do anything other than just keeping myself alive, I have to cut some corners. I simplify everything. And because I do, I can splurge on things like standing on a street corner, yelling at politicians as they go into a fund raiser, because I’m aware that there are a lot of other disabled people who could never, no matter how hard they saved up their energy, make it to a protest like that even at the cost of being exhausted afterwards. And they’re at an even greater risk of dying from losing health care than I am.

But there’s something behind this, something we all should be aware of, because when we’re aware of it, it causes much less harm. It’s simply this: Humans have a sort of evolutionary survival mechanism that tells us to stay away from disease, and to mate with those who are healthy. That’s where the concepts of “ugly” and “pretty” come from; they’re just stand-ins for whether or not you’re healthy and fertile.

So once you know that, once you know that that’s just how your primitive, animal self reacts to people, you can gauge your reaction with a bit more wisdom. Your lizard brain just looks at somebody and goes, “Are they going to give me a disease? Could we have healthy babies together?” and doesn’t care about anything else. In reality, that “ugly” person could become your best friend for life; or you could find that their personality and their mind are so charming that you fall in love with them despite what your primitive lizard-brain is trying to tell you about their looks. Because there’s so much more to a relationship than that early “ugly/pretty” reaction.

Some disabled people look “ugly” in this lizard-brain way because they are ill, or because their faces are not symmetrical. Those are indications that if you mated with them, your babies might not be as healthy. However, even for the purpose of judging whether you could have healthy babies, “ugly” is a horribly imprecise standard. Nowadays, if you wanted to tell whether you could have healthy babies with somebody, you would just go to the doctor and get check-ups.

But “ugly” is something your primitive self sees. It’s not something invented by your humanity or your compassion or your ability to communicate and empathize. “Ugly” is a concept that’s been around since our ancestors were laying eggs. We’ve gone long past that now, and so should you.

Q&A: Why do people self-diagnose?

Q: Why do people diagnose themselves online with Asperger's syndrome, instead of getting a valid assessment? Isn’t this unethical? I see people all the time diagnosing themselves as “aspies”, when Autism Spectrum Disorder is a real disability. Why do people want to do so?

A: They do this because they cannot get a valid assessment. Some lack access to mental health care, especially in the United States. Some are being asked to pay such high fees that they would have to choose between an assessment and their monthly food budget. Some know that they could lose their jobs or be denied child custody if they were officially diagnosed. They are doing the best they can with the information they have.

When you lack medical care, have just fallen down the stairs, and see that your arm is bent the wrong way, it’s not unethical to diagnose yourself with a broken arm and splint it as best you can. What’s unethical is that somebody has denied you the right to see a doctor, or made broken arms so stigmatized that you fear anyone knowing you’ve broken yours.

ASD is a real disability, and most of those who self-diagnose have a real disability. Or do you really think they would identify themselves as having ASD if there were no significant impairment for them to worry about, no social confusion or communication impairment or sensory processing disorder? Sure, some of them are wrong about what exactly’s going on; maybe they say it’s autism when with a bit more study they’d realize it better matches ADHD, or social communication disorder, or schizoid personality disorder. But then, some professionally diagnosed with autism are also misdiagnosed. Considering that the professionals get all the obvious cases because their parents bring them in, I think self-diagnosed people are doing pretty well when it comes to accuracy.

If you’re upset about this, then start advocating for universal access to mental health care and the removal of stigma around autism and disability in general. Until you’ve done that, don’t disparage those who self-diagnose.

Yes, but what kind of hate crime?

Everyone has been talking about the four young black people who filmed themselves kidnapping and then abusing a young white disabled man. They say it's a hate crime, but they can't agree on who it's against. Some people say it's against white people, because that's what the video implies. Others are saying it's an anti-disability hate crime, because the young people chose a disabled man as their victim.

How about this perspective: It's both. The term "intersectionality" has been big lately, and that's exactly what this is. A disabled man is more vulnerable to bullying; the cruel people of the world naturally choose him when they hate white people and he happens to be white. It's both.

I do research on anti-disability hate crimes, and I see it a lot. This is the first time it's been "disabled and white". White people are in the majority and tend to have more power, socially, so being white is a little bit protective if you're disabled. Usually, it's "disabled and Muslim", "disabled and black", "disabled and gay", "disabled and young", "disabled and old", "disabled and poor". Sometimes one thing is primary; sometimes it's the other.

White people may not often be targeted for hate crimes, but they're not immune--especially if they are also in some other less-privileged category, like being disabled. Take this as a call to protect every human being, regardless of the social categories they may belong to. Some categories are more dangerous to be in than others; some people are more vulnerable than others. But even when a powerful group like white people is targeted, it's still wrong.

Maybe this incident will shake awake a few white people who still think hate crimes aren't their problem because they don't participate in them. But they are everybody's problem, white or black, disabled or non-disabled, civilian or cop, child or elder.

Do you need an us-versus-them structure? All right; it's human nature, so I'll give you one. When you see this, don't think "it's black against white", because it isn't. It's "decent people against bigots". You decent people out there--protect your neighbors, your friends, your family. Look out for total strangers if you have to, if they need you. Join together against the people who have given in to hate. Help those who are vulnerable find armor to keep them safe, whether that's practical support like food or shelter, or whether it's social support and morale improvement to keep them from becoming discouraged. Use your hands, your money, your voice, and your vote. Find those bigots who are ignorant and can be educated, who can learn better, and recruit them to help, too. Refuse to hate, no matter how much hate is around you.

There are a lot more decent people out there than bigots; we already outnumber them. We just need to stop being shy about it and start drawing a line in the sand: "If you want to hurt any of us, you're going to have to deal with all of us."

Alex

I'm sure a lot of you have heard the news by now. The mother and godmother of Alex Spourdalakis pleaded guilty to involuntary manslaughter. They were sentenced to four years, and with credit for time served they'll be out in a week.

He was fourteen.

I remember being that age. At fourteen years old, I was obsessing about astronomy and dodging blows from a violent stepfather. I was bringing home duffel bags full of books from the library. I sang a solo in church at Christmas. I wrote to my Congressman and got a hand-written reply. I fought depression by telling myself I needed to grow up to become a physicist, because if I didn't maybe nobody would ever figure out a grand unified theory. For me, life was just starting. There were a lot of hard things, but there were joys, too. I didn't know it then, but I had a future, a decent future full of both hardship and joy. I didn't know what that future would bring, and I was wrong about many things I thought would happen (I didn't become a physicist, for one thing). But at that age, I had a future, and it was worth it.

Alex Spourdalakis was fourteen, and he had no future because it was taken from him. Whatever he could have done, whatever he could have been--it's gone. I can't even find very much about what he was like, as a person; every article I read about him seems to cover only the autism and the way people treated him--the neglect, the restraints, the way he was constantly pummeled with every remedy that could be found. All I know is his age. Fourteen. Too young.

At fourteen, I had a hard life, but it was worth it. Alex had a hard life, too, but I bet it was just as worthwhile as mine was at that age. I bet that, just like me, he would have grown up to have a meaningful life. A future.

But he didn't. Two people who had given in to hate and declared him subhuman, who should have protected him, thought his life wasn't worth living; so they drugged and stabbed him. I hope the drugs kept him from realizing what was happening. The horror of knowing that this is the day your caregiver is finally going to do it, finally going to kill you, is something nobody should ever have to experience, but far too many do.

I know a lot of you are probably really angry, sad, and frightened right now. Maybe you're overwhelmed by emotion; maybe, like me, you're merely dogged by a persistent, quiet sense of wrongness. I wish I could say Alex will be the last, but I can't be that optimistic.

All I can say is this: Whoever you are, disabled or not, no matter how severe your disability is, you are infinitely valuable. You have the right to live. You are an equal, not an inferior. If anybody says that your life isn't worth it, or that you're not worth it, they're wrong. You're a human being, with a whole universe of possibility in your head, and you're the only one like you that there is. The world needs you. I love you, even if I've never met you. I'm here for you. Please don't be discouraged--no matter what the judges think or how many murderers get away with it, your life is valuable and nothing can change that.

Q&A: Online IQ tests

Q: Where can I find a valid online IQ test?

A:
It’s not really possible to get a valid IQ test online. They have to be administered and scored by humans because there are a lot of judgment calls involved, and a multiple-choice format simply doesn’t lend itself to that kind of thing.

I’m from the US, and I’ve studied IQ a lot because I’m fascinated with statistics and with tests and measures (I’ve got a psychology degree, plus I’m autistic, which makes a very obsessive type of researcher!). And take it from me: People in the US overvalue IQ. It means much less than it seems, and says less about intelligence than people think it does.

IQ tests break down whenever someone who's atypical in some way gets tested. If your neurology is unusual, your communication style is unusual, even your culture is different, IQ tests start to say less and less until in the end, they say nothing.

The tests aren't utterly useless. Generally, we can tell if somebody’s outright gifted or outright learning-disabled from an IQ test, if it’s administered carefully on a good day with no cultural barriers, but the precise numbers themselves are really very deceptive. The idea that somebody with an IQ of 112 is smarter than someone with an IQ of 110 is just ridiculous. It just isn’t that precise. Only once you get to two or more standard deviations worth of difference do I feel that the differences are worth making a note of—and since the IQ test has a standard deviation of 15 or 16, that’s a big difference, the difference between average and gifted or average and intellectually disabled.

That’s not so surprising, considering that the original IQ tests were meant to identify students who needed extra help. They still fulfill that function reasonably well. But they were never meant to rank people by intelligence.

If face-to-face IQ tests are of so little worth, fail so often and say so little about us, you really can’t expect online IQ tests to be worth much at all.

Instead of worrying about IQs, we should focus on what we’re good at doing, what we’ve worked hard on, what we enjoy learning. That’s what really matters.

To those who want to learn more about IQ, I recommend the book "The Mismeasure of Man", by Stephen Jay Gould. It’s old—written in 1981—but it addresses a lot of the issues with testing intelligence and cognition, and explains why it’s hard to do and why it's much less applicable to daily life than you’d think.

Q&A: Trump's America

Q: What will you do now that Donald Trump has been elected president?

A:
I’ll do my best to help the minority groups that are going to be worst affected—poor, disabled, Hispanic, African-American, LGBT. I’m already into volunteer work, but I’ll start looking carefully at what my priorities should be, where I as a single adult can do the most good. I’ll probably be going back to work at the food pantry again, since I’m pretty sure they’ll need the extra hands as food assistance becomes harder to get and the inevitable economic issues tip people from “working poor” to “hungry working poor who don’t get paid enough to eat on”. As a single adult, I have more free time than people who are caring for families. I'm limited in energy and ability because of my autism, but what I can do, I will do.

I’ll strengthen ties with the non-white people in my neighborhood. My LGBT friends know that I am there for them and I am not going to let anybody pick on them. I’ll continue my disability memorial research, so that those disabled Americans who die because of neglect, abuse, or murder are not forgotten. I’ll stay in touch with fellow disabled people and trade tips on survival. I have a free couch, and I have no problems with letting somebody sleep on it if they need it.

I’ll keep up with the news, and I won’t neglect the international news. I never have—I usually listen to the BBC news—but I’ll put special focus on it now that I can’t trust my government to have the best interests of the world in mind. I won’t ignore tragedies just because they are half a world away, and if my government does something I don’t like, I’ll protest against it.

As always, I’ll vote in every election, and I’ll research each candidate and issue carefully. I won’t ignore local elections, but I will ignore political ads and focus on the candidate’s abilities and track record.

For me, this means that I won’t be doing very much different—I’ll just be working harder at it. I’ve always been aware of how quickly and how badly a country can go wrong. I’m German-American, naturalized. My birth country went very, very wrong in the 1930s, even though most Germans are good people. Americans are good people, too, and I won’t let what happened in Germany happen to my adopted country.

So what's your plan?

Voting Tips for the Neurologically Interesting

Election day in the United States is only a few days away. I've voted in every election for the past few years, ever since I was naturalized, so I have a little bit of experience. If you can't vote by mail or as an absentee, you'll have to go physically. Useful tips:

1. You need to be registered to vote. If you're not registered, check your local library; that's where I got the paperwork. Deadlines are 30 days in advance to just a couple days in advance. If you're registered, but you don't have the little card they send you that tells you where your polling place is, you can still vote-. Bring some kind of ID. A driver's license or state ID is ideal, but a utility bill will do in a pinch. In some places, photo ID is needed.

2. Do your research ahead of time. Know who you're going to vote for, and write it down. Voting takes place in a crowded, public location where you will have to deal with lots of people and brief social interaction, plus that "new thing" feeling that you get when you're breaking your routine. Writing down your choices ahead of time is absolutely critical. Expect yourself to be at least as overloaded as you usually are in a grocery store, and plan accordingly.

3. There will usually be propositions in addition to the candidates. This is where you're voting on laws. Most of them will be pretty easy to decide on, things like renewing funding for some public program or zoning some location in one way or another. Write down which way you want to vote on those before you go, or you'll be stuck reading the actual proposition summary and trying to decide based on that.

4. Remember that you do have the right to vote. This is true even if you are intellectually disabled or non-speaking or if you need help physically using the voting machines. If this is your first time, you might want to bring a friend who can tell them that yes, you do know what you are doing, thank you very much. And if you have an aide or a service dog who will help you with voting, yes, you can bring them.

5. It's okay to abstain. If you can't decide how to cast your vote, and you want to leave the issue up to the other voters, you can simply leave your ballot blank for that vote. If you messed up and didn't research some candidates, don't randomly cast your vote; just abstain. Your votes for other candidates will still be counted.

6. Expect to wait in line. This ballot will include a presidential election, and there will be a lot more people out to vote this year than there would be in a normal year. You may have to stand for a while, and you may end up outdoors. Prepare accordingly. Bring a stim toy, blanket, or whatever else you usually use to keep it together.

7. Expect a voting procedure something like this:

  • You go into the location, which is usually a public building of some type--a church, a community center, that kind of thing. Find a line of people waiting, and join it. If you join the line before the polling place closes, they have to take your vote.

  • At the end of the line you'll be asked to show your voter registration card or, if you don't have it, an ID. You may be asked other questions; for example, during the primaries in Ohio, I was asked which political party I wanted to register with.

  • The volunteers running the place will usually be older, and often female, and they tend to be pretty calm. If you can't catch what they're saying, ask them to repeat it. They will do some paperwork to check you off their list; then they'll let you vote.

  • You may be given a card, sort of like a credit card, to insert into the voting machine. Put this in and follow the instructions on the screen.

  • Return the card when you are done. In some places you might have to use a paper ballot or a mechanical voting machine rather than an electronic one. The voting procedure is a little bit different everywhere, so don't be ashamed to ask them how to use the machine.

8. Don't expect the ballot to have party affiliations on it; in my state, they don't. Know the names of the people you're voting for (another good reason to write things down). Besides, even if you normally support one party or the other, you might want to cross party lines to vote for a particularly good candidate nominated by the other party, or even for a third-party candidate. In local politics, unlike national politics, third-party candidates can and do win.

9. Etiquette: Voting in the US is by secret ballot, and we're not allowed to try to influence each other's votes. While you're at the polling place, don't talk about who you're going to vote for, don't try to influence anybody else's vote, and don't wear clothes that advertise any party or candidate. Think of it as like being in school and taking a test: You're not allowed to look at anybody else's paper, and you're not allowed to discuss your answers. If you want to talk about who you voted for later, after you get home, you can do it--just remember that everybody has the right to keep their votes secret; if you're curious, you can ask, but they don't have to tell you--and if you do ask, it's probably polite to say something like, "You don't have to tell me, but..."

10. Expect to be exhausted afterwards. It will use up a lot of energy and a lot of brain space, because it's new and because there are a lot of other people. That's okay; it's worth it. Go home and rest.

Useful resources:

League of Women Voters: Vote 411
Despite the name, it's not just useful for women; basically, this is an organization that teaches the general public how to vote. They're not associated with any particular political party. At this site you can get information on what's going to be on your ballot, whether you need to bring ID, and what hours your poll location will be open. It will also tell you where you need to go to vote, if you don't know already. Your polling place is also printed on your voter registration card--or, at least, it's printed on mine.

Polling place locator.
Has a nifty little map, and more information. This one's run by the Democratic Party, so they do have a section that tells you which candidates are Democrats, but their information is good.

You can even type How To Vote into Google and get instructions for your location.

And if you do vote, thank you, from a fellow American, for participating in our democracy. :)

Growing Up Hyperlexic

We don't actually know that much about hyperlexia, even though it's fairly common. Hyperlexia is a weird cross between learning disability and splinter skill, and it’s found on the autism spectrum quite a lot. Hyperlexia is associated with atypical development, especially developmental disabilities, but it can be found in otherwise typically developing children. And it’s a different thing from a profoundly gifted child who learns to read at age 2; giftedness is much more global than hyperlexia.

I was a hyperlexic kid. I can’t remember ever not knowing how to read. My memories go back to about age two and a half; I don’t know if I was reading fluently by two, but I know I was reading fluently by four. That’s the splinter-skill part. But the learning disability part is notable, too: Hyperlexic kids can read very well, decoding the words with ease, but they have trouble understanding what they’re reading.

I learned how to read and how to speak about simultaneously. In fact, I’m pretty sure that reading helped me learn about language to a degree that hearing speech never could. Words on a page are right there to study for as long as you want. You don’t have to worry about auditory processing issues (which I have, making it difficult to understand speech in anything but a quiet room with one or two other people, or a group speaking in turns). When you can see the words right in front of you, especially if someone is reading to you, it’s easy to understand that the sounds correspond to the words. I don’t remember learning how to read, but I do know I was never explicitly taught.

I remember being six years old and reading Pilgrim’s Progress. I didn’t understand the allegory, and I didn’t understand some of the words, but I could read it, all right. My ability to read hit the ceiling in early childhood, but my comprehension was much slower to improve. By age 9, I was reading things written for adult readers. I understood the facts in the books, but I didn’t have a clue about the motivations of the characters and often mispronounced words that I had only read but never heard spoken.

The comprehension issue came out in speech, too. When I was a toddler and in early childhood, I had speech that sounded communicative, but actually wasn’t very communicative at all. Instead of generating my own sentences, I tended to say words that fit the patterns of conversation, and often used “pre-recorded” phrases and sentences. Even today I sometimes have issues with this: Instead of saying what I intend to say, I follow the conversational path of least resistance and say something that matches the pattern of the conversation, but may be irrelevant, unimportant, or outright incorrect. When it’s incorrect, I don’t notice that it was incorrect until I have a chance to think back on the conversation; it’s as though in my mind, generating words and generating meaning are disconnected. Being able to speak doesn’t necessarily mean being able to say exactly what I mean. For me, writing was always much more reliable communication than speech.

I spent a lot of my childhood with my nose in one book or another, both fiction and nonfiction. My mom did a lot of things that did worse than nothing to help me and my autism, but the one thing she did right was to allow me access to books. From the start, I was fascinated with books, attracted to them the way a cat is attracted to the red dot from a laser pointer. I loved words. My grammar was perfect. I made it to the state spelling bee, to be defeated only because I was given a word I had not seen yet. (I never really read phonetically—I swallowed words whole. Figuring out spelling of a word I hadn’t seen yet was a trick I hadn’t learned.)

Around ten years old, my comprehension started to catch up to that of the other children my age, and after that, it steadily improved. Most of this has nothing to do with any innate ability; it’s a simple consequence of the sheer volume of reading I was doing. With that much practice, anybody would get better. I began to feed my interests in science, especially medicine and astronomy, with books. I learned how babies were made by reading medical textbooks. I taught myself the basics of algebra so that I could understand the equations in books about black holes.

My autism is not mild. It’s not extreme, but it’s not inconsequential, either. Many people with the degree of autism that I have are not able to live independently; as it is, I’m on the edge of independence, able to take care of myself but not handle new situations or earn my own keep—yet. My love of books and learning was a major benefit to me, even in those early years when I wasn’t quite understanding what I was reading, because it taught me how to find information and how to put it together into coherent patterns. I have a college degree now, though it took me until age 33. But even before I started studying psychology, I read a lot about the human brain and learned a lot about myself. That knowledge is why I’m as independent as I am today.

If there’s an object lesson to all of this, it’s that one’s strengths can prove to be extremely useful, even if they seem like useless parlor tricks and splinter skills at first. A six-year-old reading Pilgrim’s Progress and understanding very little of it might not look like she’s benefiting from the experience, but by the time she’s twelve and learning the facts of life from a medical textbook, or sixteen and studying astronomy, or twenty and reading journal articles, it can make a big difference.