1:47pm July 7, 2013

What it means to be expendable.

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.