3:58pm November 24, 2013

What it means to be expendable.

youneedacat:

My writing about ableism got me thinking about the way most people respond when I tell them what I and others I know have experienced. Even the worst of it. People are always trying to justify what happened to us. They respond to my stories by saying it’s understandable for people to assume I’m better off dead, and to try and refuse me medical treatment on those grounds. People have even called me selfish for wanting to be alive.

And I was thinking of some of the deeply held beliefs in modern western cultures, when it comes to disability. And that is that once you become disabled, you are expendable.

Being expendable is one of the worst things about being disabled. When our economies take s turn for the worse, programs and services for disabled people are the first on the chopping block, as we can see in the UK right now. People resent our very existence. They do all kinds of things to keep themselves alive, but letting us alive is seen as optional and somewhat extravagant.

Contrary to what many people believe, this is not a universal cultural value. Severely disabled people — people who could never walk or even chew their own food — have been assisted to live long and fruitful lives since cave man days. People were carrying them everywhere and cheering their food for them and doing everything else within their power to make sure they could live as long as possible. And there are still cultures that don’t treat us like garbage. So the idea that we are expendable is both specific to certain cultures only, and not universal even within these cultures.

But it’s so close to universal in the culture around me that it scares me to death sometimes. I have had to work hard to avoid letting it creep into my own mind. And even people who otherwise seem decent and compassionate, let slip around me that they believe it too.

One man, upon meeting me, felt it necessary to tell me, “I used to work in an institution for people like you. And there were some children, I would stand over their cribs and ask them, “Why are you ALIVE?”

He told me this in a tone of greatest anguish. He expected my sympathy. He did not understand why I rapidly moved away from him, terrified and triggered out if my mind.

His anguish was born of a toxic kind of pity. A pity that is hatred in disguise. And for all I know, he acted on it. Lots of people who work in institutions and hospitals kill their patients. Directly or indirectly. Many believe they are doing their patients, or their families, a favor. This has caused many serial killers to seek out with in hospitals and nursing homes. They have an endless supply of victims, that everyone expects to die anyway, and may even, if they play their cards right, be considered to be acting from compassion rather than the ultimate cruelty.

Being expendable also means that people don’t see your life as a human life, with all the richness and desire to continue living that they themselves have. They see you as a burden, socially and economically. They calculate how much you cost in money and effort to keep alive. And then they begin saying that you owe it to the world to fire should you become too expensive. Even ethics committees in hospitals engage in these diabolical number games to decide which patients are worth saving. And I’m not talking about imaginary stuff out of right wing propaganda here, I’m taking about things that have been going on for decades.

People have told me that I am selfish for wanting to be alive. That it is a sign of American excess, that we keep alive people on ventilators or with feeding tubes when there are REAL (nondisabled) people in other countries without enough to eat. (Tube feeding goes back, at minimum, to ancient Egypt, but never mind that.) Wealthy insurance companies fund slick media campaigns to legalize euthanasia, thinking only of the money saved by our deaths, but pretending to have humanitarian motives (who the fuck could ever call insurance companies humanitarian). People calculate up the real or imagined cost of various sorts of disabled people to the economy. Always, the message is the same: spend all the money you want on nondisabled people, but disabled people are too expensive. Expendable.

And do you know how easy it is to persuade disabled people that we are expendable burdens who should die for the good of our families and countries? Do you understand the shame of being constantly told that all you do is take from the world with nothing to give or contribute, especially in capitalist societies where money defines human value? Human happiness comes largely from being able to give and contribute to your society. Being considered human black holes who take but don’t give is easy to internalize.

And from there it’s a short step to becoming suicidal. In fact one of the founders of a major euthanasia organization has described in detail how he persuaded his sick wife to kill herself. He isolated her from all human contact but himself. He treated her like a burden. He told her she was a vampire, sucking the life out of him. And he provided the means to die. He has never been convicted of any crime, and many people treat him like a humanitarian hero rather than a twisted and homicidal abuser. He tried the same thing on a second wife. She escaped and denounced him in public. He proceeded to use her history of mental illness to slander and discredit her as much add possible.

Real humanitarian there, who is only interested in euthanasia out of compassion. There’s lots of people like him in that movement, and their actions speak much louder than the words they use to present their public face to the world. That’s why in this non-ideal world I can’t support euthanasia despite knowing some circumstances it wouldn’t bother me — it is never, in practice, confined to those circumstances, and disabled and ill and dying people are so incredibly vulnerable to being persuaded to see ourselves as a burden better put out of the way.

And it’s easy to see yourself as a burden, as ultimately expendable, in a society that sees you that way. But especially in a society where only some kinds of contributions are openly acknowledged. This creates a skewed view of ourselves, where we can’t see the very real contributions we do make because we may not be working a paid job, cleaning the house, or contributing in other ways our society acknowledges as real and valuable. We are, of course, contributing in a whole host of ways. But if nobody else is acknowledging this, it can be very hard to remember and truly believe it.

And even when we make very obvious contributions, people find ways of dismissing them. Someone actually asked me once, “Can you name even one important contribution you make to society?” Quickly followed by, “And activism on behalf of other worthless people like yourself doesn’t count, so don’t bother.” People have told me I should have been drowned at birth. That I must bring shame to my family because I’m just a retard and what value is there in that. This thread of worthlessness and taking without giving is directly connected to people wanting us dead, or never here to begin with. It’s a fairly common viewpoint that parents who know their child will be disabled and don’t abort them, should not be allowed to access any services for that child. And that by failing to abort, they are doing the equivalent of deliberately injuring a nondisabled child. And Peter Singer believes abortion isn’t enough, infanticide should be practiced too. Whatever your views on abortion, surely coercing or forcing people into selective abortion is not, ever, okay. (But you’d be surprised the number of supposedly pro choice people who think parents should not be allowed to keep disabled fetuses, or should be penalized for doing so. Which is just as anti choice as forcing people not to have abortions. But somehow more acceptable in some circles.)

So the message a lot of disabled people take home from this is not only should we die as soon as possible, we should never have been permitted to exist in the first place. Better for nondisabled people to live in our place. We are infinitely expendable, they are infinitely valuable.

And as much as each side uses us to demonize the other, this is not a left versus right wing issue. Both sides tend to view us as an expendable, optional, add on to a society meant for real (nondisabled) people. They just act on it in different ways. And when disabled people complain about it, each points their finger at the other and says it’s all their fault. Many times the left even treats disabled people as if we are stupid little kids who are being duped by the right, when we criticize ideas the left tasks for granted — but we do so from a disability rights point of view, not necessarily a right wing point of view. People fail to see the difference and pointless bickering ensues.

But the idea that disabled people are expendable, is everywhere. It seems to be in the very air we breathe. And you may even have trouble imagining what it’s like to know that all these ordinary people are motivated by ideas that could result in your death. To know that tomorrow they could pass the policy that kills you. Or someone somewhere, some individual person, acting mostly on their own, could take actions that could kill you. Because you’re expendable, and when the going gets tough, we are among the first to go.

And sometimes the idea we are expendable looks on the surface like pity. Or compassion. Or greed. Or practicality. Or ruthlessness. But under the surface, it’s all one thing: hate. Because only hatred can unite a group of people and then declare that they are expendable. That they are just a weird afterthought or add on to a society that is really for other people, and that therefore they can be removed from that society. Either by directly killing them, or by policies that result in death. Expendable is a terrifying place to live.

I would really like this post if it didn’t assume that everyone who wants euthanasia to be legal is a selfish asshole.

Maybe some people have disorders that run in the family and while they respect that other people want to be able to deal with the same problem and fight for the right to live, they would also like you to respect them for not having the ability to cope with those problems and wanting a painless way out.

Maybe it would kinda be way more respectful not to act like everyone who gets euthanasia is just “being brainwashed” as if sick people couldn’t make major decisions and are always weak-willed. Because you know, there is plenty of people who are sick and just as rational as healthy people. They are just really tired of fighting a battle that they know they can’t win.

I’ve seen IRL people literally get consumed by diseases, slowly and painfullly. Diseases that run in my family. Diseases that do not have a cure and can never get better, only worse over time. Diseases that I might easily inherit one day.

Don’t act like wanting to take away my right to choose whether or not to fight to keep on living is “for my own good” as if I am a poor helpless child who cannot make his own informed decision. That’s condescending as fuck. Please stop.

Um, I didn’t say any of that.

I said that THIS HAPPENS ALL THE TIME, MORE THAN PEOPLE KNOW.

I didn’t say that EVERYONE WHO WANTS EUTHANASIA HAS BEEN THROUGH THIS EXACT THING.

Pretty much everyone already believes that most proponents of euthanasia, or most powerful proponents of euthanasia, are like you. They don’t need me to say that. They already believe it.

I’m pointing out the dangers to disabled people. (I am a disabled person, and I am implying nothing at all of what you’re saying.)

If you’ve never been in a hospital and had people sit there and try to persuade you to die while you’re sick and in pain and not able to fight them very well, then don’t tell me that it means “being weak-willed” that a large number of people will succumb to that. It takes not just not being weak-willed, but having an extraordinarily strong will, or else a huge amount of support, or else both, to resist that in that state at that time.

There are no human beings who can easily resist being isolated from the world and told something over and over. If anything, you’re the one who’s implying that it takes a very weak-willed person to succumb to that. It doesn’t. Of course, you probably weren't trying to imply that at all. But it’s honestly true that it does not take a weak-willed person to succumb to what that man put his wife through, it does not take a weak-willed person to succumb to what I was put through, and what many many disabled people are put through every day, and it really sucks to basically say that pointing out the fact that torture exists is calling people weak-willed.

Try it sometime. Try going somewhere that you can’t get out of, and being told day in and day out that it would be better if you just… doesn’t even matter what “it would be better if you did”, you’re going to start believing it, and you’re going to have a hard time resisting it. This happens. All the time. Both in hospital and other healthcare settings (because lots of healthcare professionals sincerely believe that lots of people would be better off dead), and also in the homes of people who are plain sadistic.

Honestly I think you’re probably responding to a whole bunch of things that a whole bunch of other people have said before me, rather than responding to what I said. In which case, I don’t have time for this. I meant what I said, I didn’t mean what I didn’t say. It’s that simple. (And yeah, I know it’s not simple at all, but for me, that’s all I can say.)

I’d actually support euthanasia if it really worked the way people said it worked, and if there was no danger to disabled people. However, it doesn’t work that way at all, and it does endanger more of us than it helps. That’s why I don’t support it. Because in this world, right now, it hurts people, all the time, and so do the attitudes surrounding it. It sucks that there are people who have to die badly at the natural end of their lives because of that. But it sucks even worse than there are people dying who wouldn’t want to die, years or decades before the natural ends of their lives, because of these attitudes, and that would increase if it were legal. That’s a horrible choice to have to make, but it’s the choice we have right now. There are no safeguards that work yet.

And if you think that disabled people are somehow magically immune to pressure from doctors, pressure from family members, pressure to not be a burden, pressure to believe we’re expendable, pressure to believe we’re not really people, pressure to believe that it’s better if we’re dead (in a zillion different ways), pressure to believe that our lives wouldn’t be worth living if we continued them as they are (or as they will be soon)… then you actually pretty much believe that disabled people are superhuman, because there are very few, if any, people, who are immune to that pressure. That’s the problem. Succumbing to that pressure isn't weak, it's human. And it’s not an insult to point that out.

Signed, person who is alive right now because these laws don’t exist and who almost wasn’t alive even without those laws and it was that much of a close call so don’t talk to me about weakness.

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