The Beauty of Death, The Ugliness of Murder

Thinking about all this stuff about parents who want the right to kill us. (And yes, for anyone whose communication can go away fast in a medical crisis, its us.) And people think our objections are about fearing death.

And like… I’m actually pretty acquainted with death. I haven’t died but I’ve been close a bunch of times. The more times it happens, the less I fear it. I don’t know how to describe what it’s like from that perspective.

But it’s beautiful. If you’ve ever read George MacDonald’s At the Back of the North Wind, he does an amazing job of capturing it. And it draws you in like gravity. And all you want to do, with everything in you, is relax and go to meet it.

If you escape, it comes in stages. First, there is no resistance and no thought of resistance. Then the thought comes but you can’t resist. Then there are varying stages and levels of resistance until you’re in the clear again. More or less. For some time after, it pulls at you. It’s so beautiful and so restful and so hard to want to go away from it.

That’s why I spent this entire fall recuperating from my hospitalization. By then I knew the signs well enough that I could see that if I didn’t rest a good deal, my body would not have enough energy to resist anymore.

I didn’t tell that many people because things like this frighten people. They think you’re suicidal or dramatic or something to talk about death in those terms. But I talked to my doctor. I knew he’d been around long enough and was perceptive enough to get what I meant. And he said he’d heard all this before tons of times. And that with the blockage and the high white count they were aware it was that serious.

Another friend told me the gravitational effect is entropy in action. Your body is always resisting entropy to stay alive, by cannibalizing energy sources. But if you don’t have enough energy, your whole being is pulled towards stopping. I’ve noticed a lot of writing from times and places where death is more common, deals with these feelings that surround dying and near-dying.

Besides that, though, there are other reasons I’m not afraid. Honestly, while I have all the standard human aversion to looking at or smelling dead bodies and then some, I still consider the decomposition process beautiful. Not to be around. Hell no. But beautiful in that it represents one life going into the lives of all the plants and fungi and animals and microbes that benefit from it. It means you get to become a part of all kinds of organisms, that them become a part of others. And on, and on. The only way for life to happen is for death to happen, that’s the means we all use to cheat entropy for a little while.

All that said, though. Because this is where people start getting worried. Just because death can be a beautiful thing, doesn’t mean I’m champing at the bit to get there. It will happen sooner or later. Death may have its beauty, but life is beautiful too and I want it as long as possible.

Besides that, I think I have an ethical obligation to resist that gravitational pull, stick around, and be of benefit to others for as long as I can. Whether that’s contributing in standard ways, or in the nonstandard ways that few people can see and fewer understand. If I can stick around, I will.

Most people are shocked, even repulsed, by the circumstances I don’t mind sticking around for, though. That’s what brings out the ridiculous accusation that I fear death. I would rather put it — I don’t fear life. I don’t fear life with severe physical or cognitive impairments. I’ve had enough of a taste of both to know I can handle it. I don’t fear life with certain brain regions not working, or not working well. Because I believe that many elements of who we are, is embedded further back in the brain than most people give it credit for. Backing me up is both a surprising amount of science, as well as a highly unconventional view of what it means to be a person. Not a religious difference — no matter how many people try to pin pro-life fundie identity on us, it’s not like that at all. More a completely different way of viewing the world. Probably, like many such things, based in my form of autism.

I don’t mind that not everyone else has the same wishes I do. I do mind, however, when people with wishes different from mine want to shape legislation, hospital ethics committees, and other things like that, to make it very easy to kill (or “allow to die”) me long before I reach the point where brain region stuff is even in question.

Because I don’t fear death. I probably fear it less than most “right to die kill your disabled offspring” people ever will, because they’ve rarely spent enough time near it to know how welcoming it is. I do, however, fear being murdered. And they can never get it through their heads that that’s what disabled people fear in all this: legislation that will make it easier to kill us for less good reason and easier to get away with murder (and coercive “consent” to death) against our will.

It’s already ridiculously easy, I’m from a demographic disability-wise where people can, with plenty of planning beforehand, strangle us or shoot us or drown us and not even get charged with murder. Or police can kill us, especially if we’re also men of color, and not even get charged with a thing. These are not just opinions, I’ve done pretty extensive research. To be autistic (let alone everything else I am) is to not be considered quite the same thing as a human being who gets full protection under the law. I don’t need it to be easier for anyone. And these things do make it easier, no matter how careful people are. So however I’d want things in a perfect world, in this one such lobbying is extremely dangerous to disabled people, even disabled people well outside the range they claim to be targeting. (Ever notice how when we are against them, the fact that we can communicate makes us Not Like Their Child? But when we’re suicidal, they want to be our best friend… and make it easier for us to die, rather than helping us with pain or depression or our living situation. Yeah it sickens me too.)

I’ve always wanted to ask someone why they think that being afraid of being killed is the same thing as fear of death. Do they look both ways before crossing the street? Yeah, thought so.

Because death itself? When it’s my time, I’ll welcome it, and happily go feed all the creatures that will live because I die. I’m less afraid of that than most of these people are. But I don’t want to die too soon because someone — even family — thinks I’d never want to live in such an undignified fashion. And yes, you can try and stop that from happening with paperwork. But living wills were created to help people die, not to help us live. And an ethics committee can, and constantly does, override the expressed wishes of someone if they cost too much or are too disabled or whatever excuse they come up with to call such an action, ethics. I’ve done the research. Myself. And I’ve watched it happen in front of me. This happens. Constantly. With no fanfare. And no big media push to hold a bogus debate on. Fuck.

Death itself can be beautiful. All the crap I had to listen to today was just plain evil. And dangerous to anyone who wants to live. Including, almost definitely, the children who have been killed by their parents in the name of “ending their suffering”, and the children whose parents right this moment want the state to sanction this. Because, surprise, the overwhelming majority of severely disabled people want to live, and no line has yet been discovered where we suddenly all want to die.

Canada: Global News Live Blogging Promotion of Killing Disabled Kids Tonight

Tonight (March 16) Global News is doing a ‘live blog’ promoting the killing of children with disabilities. The Canadian news network is calling it a ‘discussion,’ but they’re misleading people. They have a three-person panel. The first person is convicted killer Robert Latimer, who killed his 12-year-old daughter Tracy by gassing her in the cab of his truck. There is a woman who has two institutionalized sons and wants to be able to - I guess “put them down” would be the term. They also have ‘ethicist’ Arthur Schafer, who is on record as being in favor about just about any killing of old, ill or disabled persons as long as the killer says they did it out of mercy.

The live blog is starting at 8:00 pm EST and will run until midnight. They are already taking comments (which run by a moderator.

Follow the link and you’ll find direct links to comment on the discussion. Please do if you can manage it. This is horrifying. Note that lots of disabled commenters are not seeing our comments coming through. (And for those who actually think this is ever okay — this is killing people who never asked to die, where it’s just assumed, in the face of much evidence to the contrary, that we’d want to die. I say we because I fit well into the demographic this happens to.)

Another murder. Please no.

I need to be writing my submission for the LHP right now. Now that I got myself off to a good start on a topic I can actually get into. Rather than trying to recombine old tumblr posts creatively.

But I have to say this.

I am devastated over the woman in Sunnyvale who murdered her autistic son.

I am further devastated over the usual responses. “It was lack of services.” (She had turned down services.) “She must have been mentally ill, because you know how violent and scary They are when They aren’t treated properly.” “Every parent of a child with autism wants to kill their child now and then. Anyone who says otherwise is lying. It could have been any of us. Let’s sympathize, not condemn.” “People don’t know how awful it is to have an autistic child. They can drive you to murder.” “It’s better to be dead than autistic. This was a mercy killing.”

I know it all by heart. I helped with the research for the first place that tried to chronicle and memorialize as many murders of autistic people as possible. We got hate mail. From the families of those killed. Saying we just couldn’t understand the murderers or we wouldn’t sympathize with the autistic people. I’m dead serious.

Every time this happens it cuts me to the core.

Every time this happens I know we are not safe anywhere.

If my parents got an ethics transplant and decided to kill me. They could fly out here and do it. They could show the world how bad I look on paper. Autism societies would rally around them and collect money for their defense fund. They would be charged with manslaughter, if anything. Their sentences would be shorter than those of anyone otherwise similar to them who murdered a nonautistic, nondisabled person otherwise demographically similar to me. It’s not that I expect justice out of a system as terrible as our “justice” system, but these disparities show something seriously wrong.

A woman’s daughter comes home from her residential school for the holidays. The girl begins to repeat the words “The sun is rising”. The mother, who has been thinking about murder for years, decides now is the time. She tries to get the girl to walk off a bridge but she refuses. She strangles the girl with a cord. She wishes the girl would die faster, saying “Let go, just let go.”

She turns herself in to the police. The entire country’s autism community comes to her aid while actual disabled people look on in horror. She claims that her daughter’s repetitive speech caused her to “snap”. She is finally convicted of manslaughter and given a few years in prison. Other parents of autistic children protest even this. As a result she gets out after five months. People have been jailed for longer for merely planning to murder their nondisabled kids.

True story. Typical of the people who get sentenced to anything at all. The way to get away with murder is to kill someone society doesn’t care about, and be someone society sympathizes with. You can say you were driven to it by having to care for us, even if you were not at all responsible for caring for us ever. People will eat it up.

Also understand this if you understand nothing else: When people use murders for telling people we need better services for parents, this does two things once it gets into the media. It holds disabled people hostage. And it means the murder rate against us goes up. Lobby for better services on your own time — not using our dead bodies as justification.

It’s a little over fifteen years ago that caregivers (not my family) tried to murder me. They knew I was having an anaphylactic reaction so they just made it clear they wouldn’t treat it and nobody would know that it wasn’t an accident. They carefully noted my swollen tongue and throat, and what that meant, and they insulted me thoroughly and walked out the door. If it weren’t for someone from the outside seeing me collapsed on the floor struggling to breathe, I wouldn’t be here.

That’s typical of caregiver-induced murders in mental institutions. They often simply don’t get help after it’s clear someone’s going to die. This is known because of times when they slip up and get caught. Other times they deliberately kill someone but blame it on seizures or heart disorders. Other times, during restraint, they disregard someone’s complaints that they can’t breathe — often their last words.

I know these things because I’ve made it my business to know them. But it never gets easier. Never.

I don’t think people understand the danger to disabled people. Particularly some kinds of disabled people, autistic people among them. That if someone wants to kill us, they generally can, and they will usually get away with it. That there is no place we can be absolutely safe from this kind of thing.

There’s a reason that some serial killers will try to find work in nursing homes or in medical settings where deaths can be blamed on other things. (One serial killer even murdered patients so that the first letters of their names spelled out words in the sequence of the deaths.) These are far more common than the serial killers who make the news, yet nobody ever hears about this. And if they do, they often think that the killing was justified because the disabled person had no quality of life. (Ever wonder why I see the words quality of life as a knife at my throat? The people who tried to kill me said something similar. That they didn’t want me around because they wanted to treat people who would really get better. And that I was a waste of space in their program.)

There’s a reason that disabled people are often singled out for murder in order to collect life insurance policies.

Another true story: A couple went to a great deal of trouble to adopt a disabled girl. They took out a big life insurance policy on her. They put her in the house and burned the house down.

They were convicted. OF INSURANCE FRAUD. And only that. Get the picture yet? That’s how little our lives are worth.

It hurts knowing these things. Having studied the matter well enough, I can’t get away from this knowledge. It hurts even worse knowing how few people understand it. How many people rush to rationalize when one of us dies.

And here’s the thing.

People swear up and down that nobody hates disabled people. And yet the overwhelming evidence is that yes, yes they do.

If people didn’t hate us then they would never justify when people kill us.

Hate isn’t an emotion. It’s an action. It’s a state of being. Hate can feel like pity sometimes. It can feel like indifference. It can feel like the person in question just doesn’t matter as much as other people do. It can be unconscious.

What else is it when people torture to death people with developmental disabilities. And judges and juries treat it like just a little mischief got out of hand. What the hell else is that other than hate?

What is it other than hate when people refer to those of us who can’t work as leeches. As people who take from society and give nothing back.

What is it when the majority of people in a country think it’s only natural that we are shunted off into nursing homes and other institutions against our will. To live out the rest of our lives. Which will be drastically shortened because institutions do that.

What is it when people want to take away what little help we get from the government. When people blame us for hard economic times.

That last one scares me to death. OMG. Really. It terrifies me. Because when people blame a very poor, very oppressed group of people for the failure of the economy. Then they do their best to toss us off a cliff. And you can’t argue. They always have an answer. There is so much hate.

People have told me I should have been drowned at birth. How is that not hate? And you hear things like this your whole life.

And then if you say something people get all patronizing. “Nobody wants you dead, dear, you’re just paranoid.” If nobody wanted me dead, why did my shrink order them to put a one on one staff for me in a mental institution to protect me from the staff who tried to “allow me to die”. Why have people told me to my face that the Nazis had it right about people like me. That I should be sterilized at minimum and killed at most. And repeatedly that I should have been killed at birth or in infancy.

Anne McDonald reported hearing someone say to her caregiver, “If it was a dog, you’d put it down.”

Among disabled people, those who are, or are thought to be, cognitively disabled in some way, are down with some other groups at the bottom of the disability hierarchy. The more extreme it’s thought to be, the more okay people think it is to kill us.

Autistic people are among such people. Even those of us whose cognitive skills were at least in part obviously advanced for our age, can be described as empty shells when we are murdered. Think of Katie McCarron. A little girl who loved life and was the only child in her preschool to know what an octagon was. Murdered by her mother, who was not her actual caregiver but who still made the “It’s lack of services” argument. Not that it would have been any better if Katie weren’t all those things. It’s just that it shows how killers can lie to gain sympathy.

And think of what a retard is. Really think. I’m talking about the slur, not any particular diagnosis. It becomes obvious that idea in people’s heads is not of a human. Or fully human. It’s a weird shriveled up piece of a human who is empty of a soul and empty of worth.

Which is why people who have been called this near-unanimously want that word gone. It’s not a diagnostic word, it’s a slur against the entire gamut of people with developmental or cognitive disabilities, and those who appear to have them.

Dehumanization is necessary for an ordinary human being to kill. When we are retards rather than people, here is one more thing that nudges potential killers to the edge. Every time I hear retard I am fearful for that reason.

The teens who lived where I first moved out on my own. They’d follow me down the street “fucking with the retard”. I have no way of knowing if they’d become violent. You never know, once you hear that word, or see its meaning written on the bodies of people who harass you. Because people do use that word when they beat you up, when they sexually assault, when they kill you. And sometimes the word hurts worse than a beating.

I still remember the man and woman who, in my twenties, tried to lure me into their car with a toy. I didn’t know what was happening until later. They’d kept touching me and talking about sex. Later I learned there was a group of people abducting, raping, and worse, DD women. They had spotted me in the street ANC tried to reel me in. There have been so many close calls. When I say nowhere is safe I mean it.

And a note about blaming murders on mental illness — like DD people, people deemed mentally ill are disproportionately the targets of violence. Not the perpetrators. Blaming these murders on mental illness fails to understand the fact that it’s usually nondisabled people who abuse us and nondisabled people who kill. Crazy is not the same thing as evil, no matter how many people try to make it so. And these murders are part of a pattern of evil acts against disabled people.

I know I’ve ventured far from my original topic, but these things are all bound together. There is an entire pattern of violence towards disabled people. I’ve only touched on the tip of the iceberg.

And this murder happened within this pattern of violence towards disabled people, and more particularly towards cognitively disabled people. It’s not an isolated incident. It’s not a loving parent who snapped because we are just so hard to live with. It’s not because of lack of services.

It’s because we are not people. We are retards. And that’s different. If we weren’t retards then very few people would be trying to excuse, explain away, or justify these murders. People only rationalize murders when the victim isn’t valuable to them. And the vitriol that comes with these conversations says more about hate than any words do.

And anybody who tries to rationalize this or sympathize with the murderer or anything even close to along those lines, I will block you so fast…

Remember: this is a pattern. People always say autistic people can’t see the big picture but I can. My eyes are open. I know what happens when we are killed. I know how unsafe all of us are from things like this. See the pattern. Please. And try to be one of the people who stops people from making this into sympathy for the murderer, into anti-disabled hate propaganda that results in more deaths.

I can’t even describe what this does to me. It freezes my heart. I feel horrible for the 22-year-old victim. I feel horrible that we all live in this kind of society where this is okay or at least understandable. Please make it stop. I’ve been crying and raging and panicking since it happened. When will people learn?

Some resources:

Murder of Autistics

Really important book: Violence and Abuse in the Lives of People with Disabilities: The End of Silent Acceptance? by Dick Sobsey. If you can find a cheap copy used, buy immediately. Otherwise it’s often over a hundred dollars.