Why, hello, old blog. Haven’t seen you in a long time……….
Let’s start with a story, shall we? I like stories.
I’m at the doctor, walk-in urgent care, with my friend Jayne. We think she has pneumonia, or damp lung, or something else that is resulting in her feeling like utter crap. So I drove and accompanied her into the exam room because they often leave you there for long periods of utter boredom and we are both bored already but have a unique relationship where we never, ever run out of things to talk about. The doctor comes in. He gets Jayne’s pronouns wrong, I don’t say anything. He asks her to look at a chart and check her medication list.
“I can’t,” says Jayne calmly. “I’m blind.”
I swallow a snort because I’m pretty sure that in that chart it says that Jayne is blind, but then the doctor starts his examination. The first thing he whips out is…….an otoscope. No, that’s wrong, but I can’t find the word. You know what I mean, those tiny little light things for peering in eyes? And he starts to peer into Jayne’s eyes and I……….I crack up. Completely, totally lose it. I’m laughing my head off because I know that the eye he is so carefully examining is glass, and within seconds, Doctor gets a very weird look on his face. Jayne is more patient than I am. She informs him of her glass eye (which he would know if he bothered to, I don’t know, look at her chart) and he responds by calling in a medical student not to learn about pneumonia, but about – you guessed it – glass eyes.
It’s months later and that story still makes me laugh. A doctor! Examining! A glass eye!
Disabled people almost always think that this story is hilarious. (Because it is.) Non-disabled people, and those who don’t spend time in the disability community, generally get confused about it. They get a weird look on their face because, well, what could be funny about glass eyes?
I’ll give you another example. Years ago I was doing personal care for my favorite kid and she goes into a grand-mal seizure. I call her mom over and we get out the suction and the diastat and the oxygen and in the middle of this the kid projectile vomits. I dodge out of the way, but her mom gets hit head-on. Ten minutes later, when the seizure has stopped and everything is calm again, her mom goes to change her clothes and we sit by the kid and we laugh and laugh and laugh, because it was so damn convenient that the vomit hit her, and not me, (I don’t have a change of clothes) and the distance the vomit travelled and the perfect aim of it –
The person I’m telling the story to goggles a bit. “But what’s so funny about a seizure?” they ask.
I try to explain, and fail. It’s not that the seizure itself is funny, it’s the timing and the vomit and the fact that in the end, everything was okay, or as okay as it ever was. It’s the basic fact that sometimes, if you don’t want to cry, you just have to laugh, and I think that this fact is at the basis of most disability humor, and is the reason that most disability humor tends to be, well, rather dark.
As am I; as are we. Dark as our souls, dark as the blood that pours from our bodies, dark as the nights which are so long, cold and bitter as the winter’s wind. If we don’t laugh, we’ll cry, so why not laugh? It may not be funny now, but it will be one day. I think. I hope, because sometimes, hope is all we have. Hope and laughter, and the hope that the laughter will come again.
2017 was a hard, hard year for me. It was a hard, hard year for many in the world. It was the year when I became not a person with a disability, but a card-carrying Disabled Person. After many years of fruitless job interviews, I applied for and was granted social security disability. Seeing the reports that the doctors wrote on me was one of the most depressing things I’ve ever experienced. You think that you’re a competent, capable person, and then you find out that your doctor thinks you’ll probably end your days in a psych ward, or worse.
I lost friends this year, dear friends who I thought were family, not through death, but through cruel indifference and cutting words. I had so many good times with them, so many good intentions, but I realized that those don’t mean anything. My dealings with people will always be just one step away from disaster, destruction, despair. I mourn these people deeply. I miss them, but I know that they don’t miss me. My fingers itch to text: ‘what’s up?’ but I know they won’t reply because they stopped replying a long time ago. Their ghosts will haunt me for decades. I can’t hug a miasma but I feel their skin against mine just the same.
I had my back surgery, and left my part-time caregiving job because my body just couldn’t do it anymore. I am now am trying – and failing – to fill up my days in some other way. I volunteer, I go to meetups, I swim, I walk, I bake, but somehow I still have hours and hours in which I need to get stuff done and yet I haven’t. I haven’t organized my papers or my filing cabinet since August. I haven’t filled out the application for affordable housing. I haven’t really left the house since Christmas unless necessary, because the windchill is in the negative double digits and my entire body says to go back to sleep.
My entire body is one mass of rock-hard pain from shoveling snow, trying to get my car out. I sit down and write a list of my blessings: Medication to make me feel better. Hot pack to put on my back. Food, including chocolate. Heat. Windows that close, blankets that are warm. Power, and the internet where I spend so many hours. Small relatives to hold and give back when they cry. I’ve read that doing this, that counting your blessings, improves your mood. It doesn’t, not really, but then again, I’m on so many medications right now that I am unable to feel anything at all, not excitement, not anger, just a constant anxiety – nuclear war, losing my healthcare – and a feeling of relief when it’s time to turn out the light.
Centuries of oppression led disabled people to develop our own culture, part of which is our own jokes and humor. As people were crowded into institutions, cut off from their biological ties, they created new ones with their fellow disabled people. When they closed the residential institutions, culture took root in the community, in organizations, in newsletters, in schools. Most recently disability culture has been flourishing on the internet, enabling people from all over the world to connect with each other and to be the ones laughing at others instead of being laughed at. Our precious in-jokes, our sarcasm, our biting wit, was born out of necessity. It was born because sometimes you can refuse to give in to oppression. You can refuse to give the people in power what they want. They may control your body but you control your mind. And so when you won’t give the world the satisfaction of seeing you cry, of seeing you bent and broken, you laugh, because it’s the only thing you can do at all.
Dark humor also makes an in-group of an out-group. Our own private jokes and things that we alone find funny are armor against an often-hostile world. We use it like blankets, huddling around the flame of what only we find funny, keeping each other warm. We who so often are the butt of jokes can find great pleasure in making jokes that only we understand. We who are so often excluded from society at large use humor and sarcasm to pretend that we were not hurt by this exclusion, that we would rather be around other disabled people, anyway.
Sometimes, non-disabled people simply do not get this. They don’t understand what is so funny or why we are laughing at what they see as a tragedy. We see a leg-bag run over by a wheelchair, urine splattered on the floor, and it’s comedy; they see bodily fluids and are disgusted. But what’s so disgusting? Disability is natural. Bodily fluids are natural. American society at this place and time have determined that disability is a thing to be ashamed of, that our bodies and brains which are so different are wrong, bad, disgusting. We rise up in the face of this oppression and use our humor and our culture to say, we are here, we are proud, we are not ashamed. It’s you who doesn’t get it. It’s you who we make fun of, because that feeling of being in the in group makes us feel powerful in a world where we so often are powerless.
Sometimes we will take the time to educate non-disabled people, but sometimes, we just don’t have the time or the energy or the inclination to do so. Explaining something to a stranger will most likely take a fair bit of time as well as have a net negative outcome. Sharing a secret joke will take two seconds and make us feel good. So who can blame us if we huddle around our own fire? You have been excluding us from your campsite for years. When a non-disabled person assumes that they will automatically gain entry into disabled space, they will often be met with rebuffs not because their own intentions aren’t good, but because disabled people have faced lifetimes of being excluded and harmed by non-disabled people, and so it is not a natural thing to assume the good intentions of others, not when we have been hurt so much. It’s nothing against the non-disabled person, it is a safety mechanism which we have to put in place lest we be hurt.
Because we are hurt. Because we continue to be hurt. The world is hurting, we are hurting, you are hurting, I am hurting. I try to remember that the winter is long, but the sunset comes just a tiny bit later each day.
So what happens now? What can anyone do, in this world so full of people who don’t understand and don’t want to understand? I drink a lot of coffee and bake a lot of cookies. The weather warms; I wade through puddles of slush to pick up three dozen balloons for a church event. They are colorful, bright, bobbing happily in the wind and rain – I know that the world is running out of helium and it’s a precious resource that we shouldn’t waste on a party but I love balloons just the same. Some part of my heart still finds joy in these tiny things. Some part of my heart has yet to die off.
He was examining. A glass eye.
We crack up, again and again.
nb: ‘Jayne’ is a pseudonym and the story is shared with their explicit permission. Huge bonus points if anyone can find the two references to one of my favorite fandoms.