3:12am July 16, 2013

I get so angry at people’s surprise sometimes.

Maybe it’s not rational. Maybe it’s not right, either. I don’t know.

I remember at 9/11 all these people freaking out about how their illusions America is safe were shattered.

And I kept wondering how they ever thought it was safe.

People are locked up and abused and neglected for absolutely nothing more than being disabled. All over. Everywhere. In your backyard.

And we are all invisible to you. Because it’s normal for disabled people to disappear off the face of the earth, never to be seen again. Whether we are locked up in institutions or in back bedrooms, or simply housebound, you never see us, except sometimes in mysterious wheelchair vans or short buses. If all the institutions disappeared off the face of the earth you’d never know we were gone.

And if the abuse or neglect kills us, you always assume that it’s because being disabled means you die young.

And if the abuse and neglect and imprisonment and alienation causes us to lose hope and decide we want to die, then instead of changing the conditions that make us suicidal and hopeless, you vote for laws to make it easier for us to die — by our own hand or someone else’s, doesn’t matter. Because you imagine it’s our disabilities that make us suicidal. In most cases, you’d be wrong. But your own fear of disability convinces you you’re right.

When bad things continue to happen to us in institutions, you don’t try to get us freedom, you try to build us better institutions. And you always fail. But you imagine freedom means dying on the streets, because you can’t imagine what real freedom would look like for us, because you take the services that help you survive for granted and think the services that help us survive are special and can only take place in special places for special people. (gag)

And you also don’t know how many of us disappear to prison. Many of us who aren’t properly diagnosed and get assumed to be criminals. Many of us who are people of color which means assumed criminal rather than disabled. Many of us with mental disabilities. Disabled people die in prison even faster than we die in nursing homes, because often we don’t even have a right to medical care there.

(And never forget the high death rate of nursing homes themselves is because they are institutions and institutions almost always provide substandard care. Not because disabled people are all going to die that young.)

It’s legal to torture us in many places. Repeat: It’s legal to torture us in many places. Places it’s not legal to torture anyone else in that manner. And who keeps those laws alive? OUR OWN CAREGIVERS AND FAMILIES. So if you think caregivers are saints for putting up with the hell that is being near us, remember that we are often the ones putting up with the hell that is being near them. (No, not even close to always. But more than you would ever imagine. Often ESPECIALLY the ones who get the most recognition from nondisabled people for being saints.)

In institutions where torture is not officially legal, it frequently happens anyway. So don’t assume you can just close the Judge Rotenburg Center and all will be well. Torture in the name of treatment is happening everywhere. Including your own backyard.

Also not all institutions are large buildings. Some look just like ordinary houses. Some only have one inmate. Or have inmates who are spread out over a large geographic area. But they are still institutions because the power structures and the way they function is just the same. Remember that when anyone tells you all the institutions are closed now. Sometimes the good looking ones are actually the worst to live in.

And lots of us die for other reasons. Because we can’t afford medical care. Because Social Security would rather turn down a thousand legitimately disabled people than give a tiny bit of money to one faker. Because we can’t afford services. Because we can’t afford respirators. Because disability often means poverty and everything that comes with it. Because of domestic violence and caregiver abuse. Because of homelessness, which is way more common among disabled people.

Almost all of these things are legal.

Almost all of these things are encouraged by our society.

So don’t tell me we were safe until 9/11 or until Guantanamo was built. That safety is an illusion. Disability is one of the only minority groups that anyone can join. Eating healthy and exercising will not protect you. Most people will become disabled before they die. So none of us have ever been safe.

But until you become disabled, you rarely question any of this system.

You think it’s natural for us to disappear. Or you think it’s unfortunate but cost effective. (Tell me, nondisabled people - when’s the last time you let anyone put a dollar value on your life?)

You think it’s natural for us to die long before we would naturally die. (You don’t even imagine that our natural lifespan is longer than our nursing home lifespan.)

Hell, you might even think it’s “unnatural" to “keep us alive", and see us as Frankenstein’s monster, kept alive by “modern medicine". You may shudder at “all those tubes" that bring us air, water, food, and medication, and help us defecate and urinate. You may hope desperately that you never “end up like that" - until you do end up like us, and realize you’re the same person you were before, and desperately want to live.

You think suicidal thoughts are a natural consequence of being disabled. Rather than, as they usually are, a consequence of the way disabled people’s lives are constrained in a million ways by our society.

But then you see the way our lives are constrained as natural outgrowth of the way our bodies work. Rather than a really disturbing cultural phenomenon called ableism or disablism. That does not have to happen at all.

Oh and also when our families murder us, you always seem to assume it’s what we would have wanted, or that it’s because they snapped under the strain of taking care of us. (Even when they actually refused to help us get services, or else weren’t even our caregivers at all.) You never seem to notice that we feel the same way about being murdered that you would feel. So they rarely get convicted of murder. Or of anything. Or their sentences get reduced to practically nothing. But that’s okay because they were already sentenced to (insert out lifespan here) of living with us as family members, that’s punishment enough. Sometimes they only get sentenced to murder once they start offing nondisabled people.

So disabled people have never been safe.

And nobody is safe from becoming disabled.

So nobody is safe. And never had been. Your safety is an illusion and the disabled people who call you “temporarily able bodied" know that all too well.

So instead of, every time there is a crisis, lamenting that “omg I never realized how unsafe we were"…

…why not actually do something to make it safe for all of us???

And if you think nobody hates disabled people, look at everything I said and try to tell me that’s not hate. Hate can come in the guises of pity and compassion, all hate means is people are doing things to destroy you, it’s not an emotion.

There’s millions of things to work on. If progress had not already been made, I’d be in a nursing home or ICF/MR. And probably long since dead. Rather than typing this from the bed I live in, in the apartment where I get services.

So it’s nothing like a hopeless battle. Unless nobody fights it. So fight it. Ableism isn’t about not saying “lame", it’s about a huge nationwide and nearly worldwide system that imprisons, abuses, neglects, tortures, and kills tons of people, every minute of every day, in your backyard. So if you can (and not everyone can), try to do something about THAT. Before it’s you.