Friday, November 1, 2013

People Like Us

Jennifer Hughes writes "People Like Us". Trigger Warning for ableism, murder of autistic people.

[Note: This piece was written for Day of Mourning as a speech (opening remarks for the NYC vigil) but never delivered (because of technical difficulties in accessing the text when it was to read, not because I didn't want to deliver it). I've sort of been sitting on it ever since, for various reasons. Autistic History Month seemed like the perfect time to finally share it, but be warned that it focuses on a very dark time in our history and how it wasn't as isolated as our society might like to think.]



People like us.

I think our society has a real disconnect about people like us. No one could ever hurt people like us, right? People like us are “society’s most vulnerable.” Only monsters hurt people like us. And when they do, they’re roundly vilified, right? Especially children like us. Everyone want to protect children. Everyone wants to protect the disabled. We hate child abusers and we hate people low enough to abuse those dependent on them. And we hate people who hurt their own family members. If someone killed their own disabled child, wouldn’t that provoke more outrage than anything? How terrible would be! We’d have them drawn and quartered!

And yet.

People like us, children like us, adults like us who need their families’ care--we are killed ALL THE TIME. By our own parents, our own family members, our own caregivers. The people who are supposed to be responsible for us. By the people who brought us into the world. But they didn’t expect us to be like THIS. They wanted children, but they didn’t want children like us. They didn’t get what the expected. And in the unpredictable lottery that is human reproduction and development, they thought they were entitled to expect something. A normal child. Of course, no one says it like that. No one says “as long as it’s normal!” But people use code words all the time. Have you ever asked someone if they want a boy or a girl? What do they say? “Oh, I don’t care! As long as it’s healthy! As long as they have 10 fingers and 10 toes!” People see this as very open-minded. But I always wonder. What if it’s not healthy? Or what if your child is something that people don’t think as healthy? Or normal? Because really, we can bleat that autism isn’t a disease until the cows come home--and we’ll be right. But it’s not really about health. It’s about normality. “This isn’t what I expected!” As if anyone gets what they expected. But some children are “good enough.” And some aren’t. Or at least that’s what they want us to believe. WE aren’t good enough. People like us.

Taking care of us is so HARD, you see. Taking care of any child is hard, of course. But we need things the others don’t. We have “special needs.” Really, we have the same needs as anyone else: Food and shelter. Respect and love. Empowerment to live our own lives in freedom, health, and happiness. But some of us need to get those things in different ways than others. We might need to be fed, even as adults. We might need to live with others who can help us with the tasks of daily living all our lives, or we might need financial support to live on our own. There’s no reason this should interfere with the respect and love. Or the empowerment to live our own lives in freedom, health, and happiness. But some people think it should. It seems like a lot of people do, in fact. Some people can ignore what happens to people like us because they’ve decided there are no people like us. There’s just burdens like us. Burdens aren’t people.

Some things are not controversial. The word “controversy” implies a difference of opinion. Some things are universally condemned. You will rarely meet someone with a nice word to say about Nazis. Right? I mean, after all, Nazis had no respect for life. Does it really matter WHOSE life we’re talking about? Well, sometimes it seems to. Most people know Nazis targeted people with disabilities. Action T4. You may know it as the “Nazi euthanasia program.” Isn’t that funny, though? Jewish people were murdered. Romani people were murdered. Gay people were murdered. Polish people were murdered. Communists were murdered. Jehovah’s Witnesses were murdered. Dissidents were murdered. People of color were murdered. Even criminals were murdered.

People with disabilities were euthanized.

Even today we still say that.

Even today, when you read about the “euthanasia” program, a lot of the emphasis will on how many of the people killed may not have really been disabled. Because it would be “understandable” if they were? “Euthanasia” comes from the Greek for “good death.” It assumes that death is better than life. And even today, when disabled people are killed by their caregivers and families, people call it “euthanasia.” Or “mercy killing.” It assumes that “ending someone’s suffering” is an act of mercy, even if it ends their life. And it assumes that’s a decision that can be made for another person. Our families love us SO MUCH, you see. And they don’t want to see us suffer. So they can decide how much we’re suffering. They don’t need to ask us, or even give us a way to tell them. They can decide how much suffering is too much. They can decide not to even consider the joys in our life, or the potential joys. They can decide that our life has no intrinsic value. There’s a charming German phrase for that: Lebensunwertes Leben. Life unworthy of life. That’s what disabled people were called, in Nazi Germany. They were also called "mentally dead", "human ballast" and "empty shells of human beings". Does any of that sound familiar? Have any of you ever heard someone say “there’s nothing going on up there?” Have anyone of your heard that said about you, as if you weren’t even there? The same way one would talk about furniture? Because I have. I would bet many of you have. It’s a bet I’d like to lose, but I know that I won’t. Have any of you ever seen organization that claim to work for the good of autistic people, of developmentally disabled people, of people with other disabilities, talk about the people they supposedly serve as if they were empty shells? As if the way we live our lives is worse than death? As if we were already dead? Because I have. And I know many of you have. And then they act as if they don’t know why people like us are killed.

They act as if they don’t know why were killed after after they beg for donations by highlighting how much we cost society. The economic burden of our disability. They act as if they don’t understand how that turns US, as humans, into burdens. Shouldn’t we know that’s not what they meant? It’s just that disability is so expensive to families, to insurance companies, to our government and us as taxpayers! All those therapies and services we need! "60,000 Reichsmarks is what this person suffering from a hereditary disease costs the People's community during his lifetime. Comrade, that is your money too.”

Oh, wait. I’ve gotten my eras mixed up. Sorry.

Well, really I’m not sorry. I’m not sorry for existing, at least. But some people seem to think I should be. That we should be.

They love us, you see! They advocate for us to get the therapies and the services that we need. And then when we don’t, and when when one of us is killed by a caregiver, they come out with a statement. “See? This is what happens when these poor families don’t get what they need for their disabled children!”

Then they can’t figure out why it happens again. They were so helpful!

We live in a world where a politician in the UK can make a statement like “"Disabled children cost the council too much money and should be put down." Oh, of course he was roundly criticized and he eventually stepped down. But let’s look at how a mother of a disabled child responded to that statement. "Shameful ignorance of Collin Brewer clear for all to see... many disabled contribute more to society than Mr Brewer - ask our Paralympians".

So our lives have value as long as we “contribute to society?” Because I may “contribute” in some people’s eyes but that doesn’t make me better than anyone else. And maybe some people would think I don’t. After all, I don’t work and I collect SSI. Maybe I’m just a burden.

Or maybe I have as much right to be on this Earth and breathe air and do as I please--as much right to food and shelter, respect and love, and empowerment to live my own life in freedom, health, and happiness as anyone else.

We all do. People like us.

2 comments:

  1. Wow! This is a very powerful piece! Props to Jennifer! I was at the NYC Day of Mourning Vigil, so I find it especially fulfilling to finally take these words in.

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  2. Strong piece Jennifer. Thank you for the historical context.

    So our lives have value as long as we “contribute to society?”
    — This is my problem with the "gift" argument, the advocacy message that conditions like autism and ADHD bring special gifts (cf Mozart, Einstein, etc). I'm not suggesting people with those conditions aren't valuable: they are as likely to be talented etc as are the rest of us. They might indeed have skills associated with their neurological condition, and many have made great contributions to human achievement.

    My point is, though (like yours), is that if we justify the existence of disabled people on the grounds of these special gifts — these "contributions to society" — we're holding them to a higher standard than applies to "typical" people. It's a standard that is bound to exclude many people. None of us should have to be a great artist or scientist or leader (whatever subjective measure applies) in order to be valued. We should all be valued anyway.

    Does this conflict with or complement the concept of neurodiversity, which is based on the recognition of the contributions of people with unusual (what medicine now calls disordered) minds? I can't decide.

    Here's my piece at Psychology Today:
    http://www.psychologytoday.com/blog/aspergers-alive/201310/should-we-welcome-the-gift-adhd-or-return-it

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