5:10pm September 10, 2014

Disability when the shit hits the fan.

People seem to wonder a lot of things about me. And all those questions really have one answer, so I might as well just answer it right now. Here are some of the questions I get asked (not always in these exact words, but I get asked, believe me):

Why don’t you care about models of disability?
Why aren’t you interested in intellectualizing about oppression?
If you’re not anti-SJ, why aren’t you SJ?
If you’re not SJ, why aren’t you anti-SJ?
What is your problem with what you keep calling ‘echo chambers’?
Can’t you see that some of your beliefs are heretical? Heretical beliefs always hurt people, you shouldn’t have them. Can’t you just give them up? You’d get along with people better, more people would read your writing, and you’d get dogpiled less often.
Aren’t our beliefs more or less the same? We both want to fight oppression, don’t we? Can’t you just call yourself SJ? People will think you’re anti-SJ, if you keep on the way you’re going.

Okay so. If this is too long, skip to the tl;dr at the end, it’s pretty basic. I’ve already gone into why I’m neither SJ nor anti-SJ, although anti-SJ people often think I’m SJ and SJ people often think I’m anti-SJ — a combination which honestly should be a clear sign that I’m neither. That there is this wide, huge space out here called ‘neither’, outside the tiny, enclosed spaces that are SJ and anti-SJ.

And this wide huge space out here called neither is the most important place in the world. This is where ordinary people live. This is where ordinary people talk to each other. This is where ordinary people are doing our best to survive.

We are doing our best to survive, without having to have our minds steered by a committee of pseudo-intellectuals who think that if they just get everyone thinking and saying the right things, then society will be fixed. We are doing our best to survive.

I live in a building of about a hundred people. Everyone here, by definition, is poor. Everyone is elderly, disabled, or both. There are both white people and people of color. Lots of people have dementia and are afraid to seek help for it lest they be thrown in a nursing home. So just about every surface you can think of (and some you can’t) has been used as a toilet at some point by someone who was confused or incontinent.

But I’m not living in an institution. Nobody controls our lives from on high, although the housing authority tries from time to time, in ways that are often illegal. This is just where I live. An elderly/disabled housing complex for poor people. There’s lots of them all over the country. This one isn’t the worst, and it isn’t the best, either.

The people who live here are ordinary people. We talk about oppression but we talk about it in ordinary people ways. I don’t know how to explain the difference. I do know, with confidence, that the worst pseudo-intellectual bullshit I’ve seen on tumblr would never, ever fly here. People would give you a funny look for a second, and laugh. Or we’d sense your condescension and get openly hostile.

And I’m just picturing this one woman I crochet with, wonderful old woman who never fails to speak her mind, and if anyone ever gave her a list of oppressive words followed by a list of words to replace them by, she would say, “I’m too old for you to be telling me how to live my life.” And then she’d politely but firmly shut you out of her life forever. I’ve seen her do it. She doesn’t take shit from anyone.

People who live here generally don’t have a college degree, let alone a degree in gender studies or disability studies or something like that. And we don’t recognize the authority of academia over our lives. We don’t see having a degree in disability studies as meaning jack shit about what you know about disability. Many people here are intimidated by people who wield their degrees too obviously. It’s not that they have a problem that someone’s gone to college, it’s not that they’re against education. It’s that we’ve been burned too many times by too many people who think their education gives them the right to tell people like us what to do with our lives, or to explain our lives to us as if we don’t know the meaning of our own lives already. And we’ve experienced too many people who really do think that “I learned it in college” means “It’s true.” And too many people who think that if we haven’t been to college (or even a place where academic concepts are regurgitated for our benefit), then we just don’t understand.

We understand condescension.

The other main group of people I spend time around is people with developmental disabilities. All types of developmental disabilities. Autism, intellectual disability, cerebral palsy, fetal alcohol spectrum, everything. I get services from an agency that serves only people with autism or intellectual disabilities, so most of the people I know have autism or intellectual disabilities. Or both.

And again, we are ordinary people. We are not a special elite who have been chosen to represent the best of us. We are just people who happen to go to the same recreation programs, things like that. And that’s how we meet, and that’s how we hang out, and again, everyone is profoundly ordinary.

Sometimes I think I know what I mean when I say ordinary, and sometimes I don’t know how to explain it at all. But I know one thing, which is that ordinary people would not and do not put up with the kind of bullshit I see going around tumblr every day I’m on here.

Ordinary disabled people. Ordinary elderly people. Ordinary poor people. Ordinary trans people. Ordinary lesbians. Ordinary gay men. Ordinary bi people. Ordinary working-class people. Ordinary ordinary people. Just ordinary people.

And for some reason, I run into a hell of a lot more ordinary people offline than I do online. And I fit in better with ordinary people than I do with intellectual elites. Even when the intellectual elites want to claim me as one of their own, I still get along better with ordinary people:

I’m Nobody! Who are you?

Are you — Nobody — too?

Then there’s a pair of us!

Don’t tell! they’d advertise — you know!

How dreary — to be — Somebody!

How public — like a Frog —

To tell one’s name — the livelong June —

To an admiring Bog!

I know, I know, I’ve long since become Somebody in a lot of people’s eyes. But in the offline world I like to be Nobody, or Anybody, and I can be accepted by lots of others Nobodies and Anybodies. I can be ordinary. I prefer to be ordinary. And I prefer ordinary people.

What makes a person ordinary? I couldn’t tell you at all. But I can tell you one thing: If you want to deal with the problems of oppression, it’s ordinary people who will be doing it.

And there’s a huge problem hanging over the heads of disabled people right now. A bigger problem than any other problem we have. And that is the imminent collapse of the support structures of the societies we live in. Some societies have pretty much no formal support structure. Some societies had one, but it’s slipping. Some societies still have one and haven’t seen it starting to slip yet. But it’s going to slip, and it’s going to slip for all of us, and people are going to die. Lots, and lots, and lots, of people, are going to die.

And it’s going to be disabled poor people, disabled people of color, disabled people with multiple oppressions who are going to be hit the worst. But all disabled people will be hit in one way or another.

We have to find a way to survive without Medicare and Medicaid and SSI and all that, because those things are not always going to be there. We have to take lessons from places where the system is already collapsing or collapsed.

We have to find ways of growing and synthesizing the medications that the pharmaceutical companies won’t always be around to supply. Or people will die. If I have no way to replace my cortisol, I will die, end of story, that’s it, there is no way someone like me can survive without replacement hormones. I suspect that with a lot of regulating agencies gone, then medications that can be easily grown will become more of a thing, whether that’s medical marijuana, opium, or kava kava.

But while all that is important, there’s one thing that’s more important. There’s one thing that makes everything else tick. That thing is ordinary people.

If my neighbor came by and was starving, and I had only one can of beans left in the house, I would share it with hir.

That. That right there. That is what will save us, if anything will save us at all.

Ordinary people helping ordinary people because ordinary people know what it’s like to have nothing. People pitching in with what they can do, and accepting help with what they can’t do.

That is the only thing that will save disabled people.

That is the only thing that will save any oppressed people.

But especially when the shit hits the fan.

That is what we need.

We need compassion. We need love put into practice. We need more doing and less saying. Except when saying is a form of doing, at which point it’s exactly what’s needed. We need the kind of saying that will help people to do things more. That will motivate people towards love and compassion.

What we don’t need, when we’ve got nothing to eat, is people pontificating at us about whether we used an ableist word or not. Hungry people are often crabby people, and you haven’t seen the Grumpy Stick until you’ve seen a starving disabled person pontificated at about disability politics by a pompous pseudo-intellectual. I mean seriously WTF. Not the time or the place.

But anyway, the reason ordinary people are key to everything is that most people are ordinary people. Ordinary people may not have checked their privilege or learned all the right words to say. But if we’re going to survive as a society, it will be because of ordinary people, not because of SJ or anything dreamed up by SJ.

And as a disabled person, when I look around and try to figure out how to survive when everything goes to hell. I look to ordinary people, both disabled and nondisabled. I look to how to appeal to the love and compassion that exists within most people. I look at how to bring that out, how to make sure that communities are real communities. A community is a community when each person is willing to give whatever they can, to help each other person. That’s what love and compassion look like in practical form.

Without it, disabled people are doomed.

Without it, we’re all doomed.

Now do you understand why I get frustrated with the way things sometimes work on tumblr? Here, we’re encouraged to pontificate about things that at best have a very loose, sideways effect on us if they have an effect at all. We’re encouraged to mistrust anyone with different life experiences than our own, to splinter our communities into tinier and tinier fragments. We’re encouraged to shun anyone who doesn’t believe exactly as we do, and even more than that, to shun anyone who doesn’t shun them too. Half of what goes on here is the breakdown of communities, when communities are key to our survival, and people wonder why I don’t trust the things that call themselves communities around here.

I trust ordinary people. I trust ordinary people because I live with ordinary people. And I know that there are people on tumblr who like me but are afraid to talk to me because I have said things that upset the echo chambers. And I know that there are ordinary people in my building who can’t stand me but would help me up if I fell down in the street. And I know that I trust the impulse of someone who can’t stand me but would help me, more than I trust the impulse of someone who likes me but is afraid to be seen agreeing with me in public.

And believe me, I’ve seen the worst of ordinary people, too. I’ve seen all kinds of awful things. But with ordinary people, you don’t have the echo chamber. So you have a stronger chance of building love and community, than you do in a place where everyone is being encouraged to distrust each other and fragment themselves into smaller and smaller groups, groups of only people like themselves.

So the answer to all of those questions… because I can see that the world is heading to some really bad places. And because the only solution I can see is in encouraging the best impulses of ordinary people towards love, community, and compassion.

And that’s both a lot easier, and a lot harder, than what goes on in tumblr a lot of the time.

It’s harder because you can’t just declare yourself right and be right. You can’t just tell everyone it’s your way or the highway. You have to get along with people. You can’t just order people around. You can’t just shun people when they say the wrong words or have the wrong opinions.

But it’s also easier, because you don’t need a college degree to understand love, compassion, or community. These are simple concepts. These are concepts that children can usually begin to understand very young, if taught. You don’t need fancy ideas, or a fancy way to present your ideas. You don’t need everyone to agree on every little detail, in fact there’s very little that anyone has to agree on at all.

The main thing that people have to agree on is that: People matter. All people matter. People matter enough that every community should be committed to the survival of every community member, regardless of kind or degree of disability. Small, remote towns and places with nasty climates and the like, often already grasp this implicitly because they have to. Other people have to be brought up to speed. But these aren’t hard concepts.

Tl;dr: I’m an ordinary person, living among ordinary people, and I think ordinary people are going to be the key to whether disabled people, among others, can survive the upheavals that have already started in some places, that are starting in others, and are about to start in others. I care more about love, compassion, and community than I care about people agreeing with everything I think or say. Because the presence or absence of love, compassion, and community will save my life (and the lives of everyone I care about), or end it, when the shit hits the fan.