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.