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Apr. 21st, 2015

In the News: Kennedy Apologizes for "Holocaust" Comment

Robert F. Kennedy Jr. apologizes for "holocaust" comment in vaccine debate

In one fell swoop, he's managed to insult both autistics and Holocaust survivors. Quite a feat. A tip, Kennedy: The Holocaust was genocide. It was horrible. It was evil. We never want it to happen again. Autism, on the other hand, is a developmental disorder that doesn't shorten one's lifetime nor take away the same chance at happiness that any human being has, and autistic people and our families are really, really tired of being cast as "catastrophic tragedies".
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Mar. 29th, 2015

You're Not Like My Child... My Child is Severely Disabled.

I get this sometimes. People look at me; they see I can talk, I can take care of myself, I live on my own with no more than a case manager checking in weekly (thank goodness, by the way; it was long overdue and I'm very pleased to finally be able to depend on someone to help me figure out the little unexpected bits of daily life)...

And they say, "You're not like my child. My child is severely disabled. He can't go to college. He can't talk. He won't live on his own. He can't..."

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Mar. 9th, 2015

I've changed my mind.

Over the past few days I've been working on a new database--the Memorial Annex, which as you might guess is an annex to the autism memorial. Rather that proper memorials, it's a simple list of identifying information for disabled homicide victims, to help other people doing research on other disabilities (or all disabilities), and to get a more comprehensive list for next year's Day of Mourning.

During my research for this site, I've come across a lot of killers who were given the death penalty for their crimes, and I've been doing some thinking. Growing up, and until quite recently, I supported the death penalty for premeditated murder--for killers who wanted to kill someone and deliberately did so. My reasoning was pretty simple: If you take someone else's life, you forfeit your own. And I still believe that.

But I've changed my mind about the death penalty. I no longer support it.

I haven't changed my mind about the morality of the death penalty, not quite. I would still disagree with the statement that "Even a premeditated murderer should not be deliberately killed," because I still think that paying with your own life for taking someone else's is just. However, I've come to realize it's not as simple as that.

The world isn't an abstract philosophy textbook. Those premeditated murderers are full-fledged people, in a messy culture full of racial prejudice, fallible legal systems, and human error. And the death penalty is just too permanent. What if we made a mistake?

And we have. Some innocent people have been executed. Some people who are guilty are executed, while others who are guilty of very similar crimes receive life sentences or even less than that. Race plays into it, and culture, and even what state they committed their crime in. Sometimes the ability to convince the jury that they're sorry makes the difference between life and death.

I still don't think the death penalty is unjust. I simply don't trust fallible human beings to carry it out fairly. We can't trust ourselves to take each others' lives into our hands that way. I wouldn't trust myself to impose a death sentence, nor do I trust anyone else.

For premeditated murder, when we know (or think we know) someone has killed before and is perfectly capable of killing again, I think we should put them in prison for life. It's still a harsh sentence, but it's not permanent, like the death penalty is. If we made a mistake, at least we wouldn't have killed someone over it. And the effect on society is the same: The killer is out of circulation, whether they're dead or permanently imprisoned. The death sentence doesn't seem to have too much of a deterrent effect because most premeditated murderers willingly risk their own lives simply committing the murder (they risk that the victim will fight back and kill them, or that they will be shot by police trying to arrest them), and so the extra risk of a death sentence afterward isn't really adding anything.

So whatever my philosophical thoughts on the death penalty, I think that in a practical sense, it doesn't make sense to keep it on the books. Theory collides with practice, with human fallibility, and with the real world, and we have to take into account how things actually play out rather than focusing just on how we wish they would.
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Mar. 1st, 2015

Day of Mourning 2015: Murder of the Disabled Q&A

Today I'll be joining an online vigil for the 2015 Day of Mourning. The point of the vigil is to commemorate people with disabilities who were murdered by their families and caretakers--killed by the people who were supposed to protect them.

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Feb. 15th, 2015

Yes, I'm okay.

A few days ago, someone posted on my journal that they were worried because I haven't posted for two months. I appreciate the concern--I really do; it makes me feel connected to the rest of the world that someone would notice that I haven't managed to post for so long. I want to reassure you all that I am indeed okay; I've just been having some trouble lately that's been taking up all of my attention.

I thought about it and I realized that maybe it would help to explain things to the anonymous Internet; isn't that the point of a blog? Well--this blog has been more like a series of essays than chatty talk about everyday happenings. It's final drafts instead of rough drafts, with each essay organized and edited. Maybe that ought to change. If there's anything I'm good at, it's lecturing about random things.

But here's the basic problem: I need more help than I'm getting, and I have a lack of medical records because I wasn't diagnosed when I was a little girl. The reason for that lack of diagnosis is rather simple: Deliberate medical neglect.

Trigger warning for abuse.Collapse )

Dec. 19th, 2014

After the Happy Ending

This entry contains spoilers for Disney's Tangled.

So what happens to Rapunzel after she gets her happy ending? She's out of the tower where she's spent her whole life. Mother Gothel is long-overdue dead and dusted. She finally gets to meet people. She gets to have her birth family. She finds out she's royalty. The guy she loves just proved how much he loved her. What could be better? Roll credits.... right?

But things aren't so rosy for the princess, are they? She's a sheltered child who's just been thrust into the monarchy. Her entire life, she's had parenting based around guilt and fear from a foster mother nearly as isolated as she was. Oh, sure, she's charismatic enough to talk an inn full of rogues into not killing her escort, but is she going to survive being the "lost princess" that everyone longed for? She's lost her specialness; the hair that heals people has been cut. Sure, her boyfriend cut it off to keep Mother Gothel from taking her away and, presumably, keeping her captive for the rest of her life; it's not like she was going to be able to heal anyone with it to begin with. But she still has to live with the fact that she's no longer a special, magical creature; she can't solve the pain of the world by wrapping it with her hair and singing a song. For Rapunzel, the world suddenly got a lot more complicated--and all the skills she learned to deal with her captivity are suddenly useless.

What now?

I couldn't help thinking about how very much this story is like my own, and like that of many people who have survived trying times. I survived an abusive childhood, a stint in a cult, two hospitalizations; I've been expelled from school, fired from my job, and been without a home to call my own. I too had a childhood built around guilt and fear, and I too have lost my specialness, which for me came from being a precocious, gifted child, now that I'm a thirty-one-year-old still trying to get a college degree. And even though I'm free now, with a new haircut, all the skills I learned growing up were skills that help a person survive captivity.

I took it for granted that I wouldn't be allowed to make my own decisions. Now that I'm free, I don't know how. I thought of "fun" only as something you snuck when your keepers weren't looking; now that I'm free, I can't enjoy myself without guilt. What I ate, when I slept, when I did chores, were all prescribed for me; now that I'm free, it's a full-time job just to remember to do all of those things. I learned how to pretend I wasn't disabled; now I don't know how to use the help I'm finally getting. I escaped bitterness as I learned how to care about others, but I never learned how to care about myself. I survived captivity, but can I survive freedom?

This happens to a lot of people--people who come out of institutions, out of prison, out of cults; people who get out of poverty or grow out of an abusive childhood. When you're trying to help people in captivity, it's not enough to just get them out of their respective jails. To really become free, a person has to learn how to live in freedom. It's a difficult lesson, one I haven't yet fully learned.

Nov. 29th, 2014

We're All a Little Autistic

NT toddlers flap their hands.
NT teenagers love roller coasters.
NT adults are shy.
NTs are late talkers.
NTs misread each others' intentions.
NTs find perfume, loud music, or wool sweaters to be unbearable.
NTs stutter, fidget, and get burned out.
NTs can even have meltdowns.

So is it true that "we're all a little autistic", even the most neurotypical of us? Yes and no.

People with an autism diagnosis have one for a reason. Usually it's because, in some or all environments, throughout some or all of their lifetime, they have had trouble doing things that are expected of the average neurotypical. Their traits are severe enough to cause disability. If they weren't disabled, they wouldn't need a diagnosis.

Still, autism is not an alien thing, however much it's stereotyped that way. The statements at the beginning of this article are all true. NTs can have autistic traits. They can have experiences that are very much like those we have.

Some autism parents get mad when we make statements like that. They say, "My child is autistic! He is nothing like your non-autistic child! He is nothing like you pretend autistics, with your talking and grown-upness and ability to tell me I'm wrong!"

Genetic research has turned up hundreds of genes that can contribute to autism, all of them only a tiny fraction of the cause. And yet autism is highly genetic. It's a disorder that you get when you have enough of those genes, in the right combination, in the right person. And yet all of those genes are floating around in the general population, in people who aren't autistic.

Is it so hard to understand that neurotypicals can have autistic traits--that we can "all be a little autistic"--and still understand that autism is a disability, a significant one? Are people so desperate to distance themselves from the idea of disability that this is a threatening concept?

When we say that typical people share experiences with disabled people, we aren't trivializing disability. We're saying that disability itself is a part of the human experience, not a world apart.

Nov. 20th, 2014

What is Autism Culture?

A culture is a set of ideas shared by the members of a group of people. It can be based around genetic relationships, common experiences, common goals, or anything else that groups people. Even universities and corporations have cultures. And so does the autism spectrum.

With the Internet comes the ability to talk to each other--even to those who can't use spoken words, and, through family and friends, to those who don't use words at all. As we've begun to communicate, we've formed ideas that we can access more easily than people who aren't autistic can. And that's the beginning of a common culture.

I don't mean here that we all believe or experience the same things; that would be ridiculous. It is more that we all use the same concepts. For example--one person may be desperate for a cure; another person may declare they would rather die first; but both are part of the same culture because they both understand that curing autism is a very significant issue. Even someone arguing that it should not be significant is accessing that same idea of cure as a divisive issue, either desirable or not.

It's a very nebulous thing, this new culture. It hasn't quite formed a distinct shape yet. You can see it in the language we use. Some people say "Aspie" and others "Aspergian"; some people mean "neurotypical" as "non-autistic" and others mean it as "neurologically average", excluding non-autistic people with brain-based differences. Right now it's more of a loosely connected web of subcultures than one big culture. There's the intersection of autism and the bigger developmental disability culture (which is, by the way, more well-established than ours; just look at People First). Then there are the people who went to mainstream school, who tend to focus on bullying and exclusion, and the autism-as-disability group who focus on autism as a disability rights issue. Each forum and group has its own set of ideas to contribute.

It's interesting to watch these ideas crystallize as the months and years pass. Our library of ideas is like half-mixed pancake batter, with bits of flour still dry and milk still sloshing around. And yet as time passes, those loosely bound groups join hands, and the ideas we share become better connected. I remember when it was common to consider Asperger's to be not on the spectrum at all, to define disability as necessarily severe, or to use "...but I'm really smart" as a way of justifying one's existence despite disability. We're starting to connect those subgroups, the developmental disability people and the nerdy-gifted people, and when someone goes to put down one group or the other, people call them on it.

"AS/HFA" and "Autistic" used to look at each other warily, and there's still some of that, but now they're starting to merge, probably because we're realizing just how much we do have in common. I remember when I was first diagnosed I focused on the idea that autistic people could be talented and refused to see myself as disabled. Now, I know I'm disabled, I identify with "developmental disability", and I understand that it's okay to ask for help--that, indeed, it's my right, that it's perfectly legitimate to request help with daily living skills so that you can finish a college degree. I've learned so much from the people they label "low-functioning" that I'm a little bewildered by the idea that I used to think we were fundamentally different just because I can usually talk.

Disabled doesn't mean incapable; gifted doesn't mean you can do everything. As a gifted person with a moderate developmental disabilities, I've come to understand that, like many autistics, I'm floating in the middle between subgroups; but as autism culture starts to work out the lumps and connect the ideas, more and more people are realizing that they're in the same situation I'm in, that the spectrum isn't either-or. We're seeing ourselves in people who, in the outside world, would be put in completely different sociocultural boxes.

We will probably always have those subgroups and disagreements. Because we're human, there'll always be drama, arguments, even hatred and hostility. But as time goes on and we exchange ideas, we're building a library of information that is the foundation of this new culture.

Nov. 10th, 2014

The sensory processing paradox

The other day I was shopping and using a self-checkout machine to pay for my groceries. It was a noisy, busy store and I was having a hard time hearing whether the machine was beeping to signal that it had scanned a bar code. After a while, I put in my earplugs, frustrated and thinking at least I would have peace and quiet. And lo and behold, with my earplugs in, suddenly I could hear the beeps. The earplugs had cut out just enough noise that I was now able to filter out the relevant noise from the irrelevant.

This is something that many of us with sensory processing issues know: Less is more. Block out some of the input, and you can more easily interpret the rest. Put on sunglasses, and you can see better; wear a hood to block peripheral vision, and you can navigate better. Sensory processing disorder, whether it comes with autism or without it, can give you such a flood of sensation that you can't make sense of any of it. That's why so many of us avert our eyes, curl into balls, huddle into our blankets, shy away from noise and light. The hyposensitive may deliberately seek intense sensations; the hypersensitive seek to block out all the subtle things that confuse what we're trying to pay attention to.

Why don't the therapists understand this? When they make us seem to be paying attention, when they force us into eye contact and "participation", they aren't involving us; they are blinding us. When a person understands better what they aren't directly looking at, forcing them to look at it--and worse, training them to force themselves to look at it--can mean denying them the experience of it altogether. But I suppose, when looking normal at all costs is the priority, a little bit of distress and an inability to actually participate while seeming to do so, is a small price to pay.
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Nov. 8th, 2014

Remembering the Dead

Today I added the 200th memorial page to the autism memorial site. The most recent death was on Monday. We lost a little boy named London McCabe, a six-year-old iPad afficionado with a cute smile. His mother threw him off a bridge after blogging about how hard it was to raise an autistic child and asking her readers for money.

London's story is the most recent, but it's not the most recently added. The 200th I added was Dyasha Phelps Smith, a 21-year-old high schooler who died from choking because she wasn't properly supervised. Even though she died before London, she was added later, because I had trouble determining whether her death was a case of negligence or a simple accident that could've happened to any high-schooler.

And that's one of the odd realities of maintaining a memorial: It's a research project. You think at first glance that it would be all about finding these tragedies, mourning them, and telling others so as to reduce the chances that they'll happen again. And yes, that's the intent, but in the day-to-day of it, despite the tragedies, it can get very mundane. Think how Holocaust researchers have to pick through old records, match names, interview dwindling numbers of witnesses, just like any other historian. Maintaining the memorial is a lot of that same thing--searching through the Internet, following leads, deciphering foreign-language articles, searching virtual graveyards, even matching pictures.

I've learned a lot over these past 18 months. I can now read court documents with full comprehension. I know how to find old newspaper articles. I'm familiar with the Holocaust library at my university and I know how to track down articles about an obscure person even when a famous person has the same name. I've consulted with research librarians and frequented online crime forums. Sometimes, as time goes on, my little memorial becomes one of the last signs that the deceased individual even existed. Sometimes, I get involved in big cases that make the national news.

One of the problems I often run into is deciding whether or not to include a case. It isn't enough for someone to be autistic and dead; this is a memorial specifically for those who died because other people saw autistics as not worth caring for, or denied them the basic necessities of life, or killed them. Murders are easy; if someone knows they're autistic and kills them, that's enough. Or if someone knows they're disabled, or sees them as a good target, I'll put it in. Extreme neglect cases are easy too. Jarrod Tutko starves to death in his own attic; he's there. But what's neglect, and what's an accident? That's why Dyasha's case took so long for me to decide to add, even though I first read about it on the day it happened. She choked to death at school because she wasn't supervised; I had to establish that the school knew she needed supervision, that she was left alone despite that known danger.

I'm always up against that problem. When I include a case, then people get to know about the person we've lost, and we learn how bad the problem of anti-autistic hate crime, abuse, and neglect really is. But if I include a case that's too normal, that could've happened to anyone, that didn't really involve neglect despite its tragedy, then I risk making those hate-crime deaths trivial.

Here's an example of a case I didn't include:
City to Modify Traffic Lights after Death of Teenager
In this case, an autistic teenager who was obeying traffic rules got killed because the traffic light was mistimed. David Lindley is no less dead even though no one intended to kill him. Perhaps his autism even made him more vulnerable to dying from being killed by a mistimed traffic light (I know it would have been hard for me to think fast enough to understand that the traffic light was "lying" to me). But in this case, there was no prejudice, no intent, no carelessness, no system that refused to give an autistic person the basic help he needed to live. It was just a mistimed traffic light and a teenager who walked into traffic he didn't know would be there. It could even be called negligence, depending on exactly how mistimed it was and exactly how little the engineers cared about making it right. But it wasn't aimed at autistic people, or at disabled people, or at anyone in particular, and that means the case doesn't go on the memorial.

But even those cases, I have to research properly. People who want to look good in the media don't come right out and say, "Hi! I'm a horrible excuse for a human being who doesn't care enough to give an autistic person the basic necessities they need to live! Villify me, please; I deserve it!" No; they say, "We tried our best," or, "We're looking into it," or "We're changing our policy." Sometimes they deny culpability entirely. Sometimes they try to shift the blame. As an autistic person myself, it's hard for me to detect that deception. I've almost had to come up with heuristics: If they were autistic, and their killer intended to kill them and knew they were autistic, I will put the case on the memorial. If they were denied something that their staff knew they needed and died as a result, I will put the case on the memorial. If the same thing could have happened to a neurotypical person in the same situation, I will not put the case on the memorial. If a suicide comes after a long period of abuse that was not addressed, I will put it on the memorial, but the mere presence of abuse or bullying by itself isn't enough. If a suicide comes after depression despite treatment, the death was due to depression; if a suicide comes after depression when treatment was denied or botched, it was due to neglect.

And there are so many borderline cases. Avonte Oquendo, who could have been saved by an audible door alarm, is not on the memorial; Dyasha, who could have been saved by one-on-one supervision, is. The distinction is slim; Avonte had a handwritten note from his mother that "he likes to run", while Dyasha had a formal supervision plan that was ignored. I'm still not sure I'm right. At some point, if more is known, you might see Avonte Oquendo on the memorial.

To this project as to any other, I bring my autistic detail-oriented nature. I collect these tragedies like you might collect beautiful stones, and look over them later. It's a macabre collection, even depressing, but it's easier for me to collect than not because it means that I'm doing something instead of sitting and watching cattle cars go by.

The emotional experience of it is, for me, actually less painful than you might think. My empathy style, as an autistic person, is rather detached. I care about someone halfway across the world just as easily as I care about my next-door neighbor, but instead of being emotionally devastated, instead of echoing their pain with pain of my own, I feel more of a sense of wrongness. It's like what I might feel when a pattern is broken or when I'm confronted with an ugly prime number, but it's stronger than that. It's, "The world is wrong. It has to be fixed. I have to put this crooked thing straight. I have to put this chaotic collection in order."

And so, when I work on the memorial, if I feel anything most of all, it's satisfaction. I know how hard it is for autistic people, and I hate how badly we're treated. This lets me feel like I'm doing something.

The other day I found a photo and a name for an anonymous child who was killed in 2010 by his grandmother. He was one of the first whose stories I found, but I never knew his name because the media couldn't report it, since when he was murdered, his mother couldn't be found to notify of his death. Periodically I would search for news of him, trying to find who that anonymous nine-year-old boy was. Finally, I found his grandmother's grave on an online cemetery, and from his grandmother's grave, I found a link to his. Now I know his name was Kyle Potts, and I have a photo of a smiling, gap-toothed boy with brown hair. Kyle Potts is still dead, and I can't change that; but now that I know his name and can see his image, I can better tell other people that little boys like him deserve to live.

Sometimes I find myself talking to the dead. "Here, little one; let's find out who killed you." "Where did you live?" "Three sisters; you must have been surrounded by girls..." "Oh, you were such a beautiful child..." "You liked cats and coffee, just like me..." Is that creepy? I guess it is. I feel like they, especially the children, are my cousins, long-lost relatives, people I'll never get to know. Somehow I feel cheated because I can't mourn them as intensely as I would if I had known them better.

The youngest on the memorial six-month-old Rylan Rochester, whose mother killed him because she thought he was autistic. The oldest is 82-year-old Richard Meredith, whose lobotomy at age seventeen caused brain damage that, in old age, resulted in death from choking. There are police shootings--all men, mostly non-white. There are restraint deaths, sometimes with tiny children being crushed by multiple adults. There are abuse cases, murders, and neglect cases. Some committed suicide after being tortured by bullies and receiving no help. There are a few unsolved cases and one serial killer who targeted disabled men. A few weren't diagnosed autistic, either because they were never evaluated, or because they weren't autistic but were labeled autistic by their killers. There's the memorial to the disabled of Europe killed during the Holocaust, though I still haven't found any names or photos of victims who were probably autistic--both because the records are so scanty and because, back then, autism wasn't well-known.

The one thing all of these people have in common is that, in a better world, one where we cared about autistic people, they would have lived.

Sometimes it gets hard to keep up with all the information and cases pile up. Sometimes I just get frustrated with my inability to pin down the facts of a case. And yet eventually, I always come back to the project, combing the news, looking through legal databases and memorial sites. For me, it's easier to address these tragedies head-on than it is to try to look the other way.

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