Dancing without flight - Short story

Brian lounged against the sofa, sipping a beer. His friends floated above him, talking animatedly and slowly spinning in the air as a group. Lisa caught his eye and glided toward him, her smile sweet but a little forced, as she reached out her hands for his and moved her body, pretending she was dancing with him.

He grinned and reached toward her, but she motioned for him to stand. The couch was low, more of a mattress with cushions really—fine for people who move effortlessly through the air. But they never seemed to understand that, muscular and fit as he was, it was irritating for Brian to have to scramble to his feet from the floor. Not to mention that his body ached from keeping up with them all day. He really wanted that beer.

But dark-haired, quick-eyed Brian was always game. He put down the beer and pushed himself up, trying to make it look easy. But he staggered as he got to his feet, and Lisa’s hands went to her mouth. “Oh, sorry, Brian! I didn’t think…”

“I’m fine!” He chuckled and swayed crazily on purpose. “Ya know. Brian, the klutz. And there’s the beer too.”

She wiggled in the air and then flowed around him languidly, stroking his cheek as she passed with a gentle breeze. “Your legs are sooo strong!” Her send gushed. “People think gimps are weak but they’ve never seen you hike over that ridge, like today. No wonder you have muscles.”

He smiled, a bit less broadly. This called for some modesty. The flavor of her send wasn’t fake exactly, but she did want gratitude. He ducked his head and managed to blush a little, by thinking of what she might actually look like undressed. Not that he would ever find out. And he carefully shielded that thought, as well, making sure not even the littlest hint slipped out.

“Liiiiisa!” The send was drunken and raucous. One of the other guys calling her back.

She giggled and gave Brian a parting smile.

Brian sank back on the low couch, making sure his face showed only mild amusement. Afterward, he would come to realize that that was the evening when he became aware of how much he pretended for the benefit of abled people.

Lisa and several of the others came to lounge on the couch near Brian but mostly turned slightly away from him. It wasn’t on purpose, not really. Most people just weren’t very aware of him. He rarely added much, except to laugh at other people’s jokes or clowning around.

Chad, a tall, handsome guy, popular with the girls, was talking long and loud about a professor who had given him a bad grade on a paper. “That ground crawler!” Brad’s send simmered with righteous anger. “He thinks we don’t have any other classes.”

“Chad!” Lisa flapped a hand in front of her face, feigning shock, as she cut her eyes at Brian.

“Well, obviously, not like you Bri,” Chad dismissed it. “You’re not an idiot.”

Brian laughed and patted Lisa gently to ease her discomfort. But the awkward feeling didn’t dissipate until Brian noticed it was time for him to catch the last shuttle. He left without forcing anyone to say goodbye. It was more than an hour later, sitting on the slow, clunky night shuttle, that Brian let himself clench a fist in anger. Yeah, it was a shitty term Chad had used.

“Ground crawler.”

That was the expression people used a lot to mean “idiot” or “asshole.” It wasn’t that they necessarily thought flightless people were stupid, though Brian knew a lot of them did wonder. His disability wasn’t neurological though. His wings had been severely injured at birth. It was a purely physical disability.

And Brian accepted his lot well enough. His parents had been matter-of-fact about it with him when he was a kid. They didn’t want him to develop self pity. There were shuttles for the old and infirm or for people with several small children. He could use those.

Because most flighted people lived in towers and much of the social life went on many floors above the ground, there was often a pulley system for bringing large furniture or supplies in and taking garbage out. Brian carried his own harness and clipped in to get up to his friends’ apartments or even to a lot of classes without stairs, though these days universities were required to build stairs to make the buildings accessible for the disabled.

All the hiking, using garbage pulleys, going the long way around to find the one staircase in a huge university complex and all that was a nuisance. But now that he no longer lived with his parents and in the shelter of their social group, Brian was starting to realize that was the least of his worries. His classmates and friends, even most professors, saw first and foremost the way he was nailed to the ground, awkward, clunky and forever limited.

It galled, especially completely unconscious, seemingly innocent comments like Chad’s. People used “ground crawler” or just “crawler” or “mud” as derogatory terms for all kinds of things. And mostly Brian was fine with it. It was just an expression. The people using those terms probably weren’t even remotely thinking about him when they did. But he was starting to realize that the attitudes behind that kind of expression did most definitely affect him.

A couple of weeks later, he was in an interview for a summer internship with a science lab. He’d seen the interviewer’s face stiffen when Brian came in, walking… on the floor. The supervisor’s questions lacked enthusiasm, despite the fact that Brian knew his grades and previous experience were the best in his class, likely the best in the whole biology department at the U.

When they moved on to the tour of the lab, he saw why. The whole place was set up for flight. The lab was completely 3D, work stations positioned on the walls of a giant amphitheater, information charted on screens hung in the middle, screens one had to move around to see all of. It would be laborious to reach the work stations with cables and pulleys. It would be impossible to quickly reference the screens without darting around in midair, as several lab techs were doing while Brian watched from below.

He let himself be shown out. They said they’d be in touch. They weren’t.

Brian had always resisted getting involved with “disability organizations.” He figured they were for people who weren’t able to integrate themselves into society. He was strong, smart, adaptable and in excellent physical condition, except for his wings, which he wrapped against his back to keep them from flopping around uselessly.

Creative commons image by randomix of flickr.com - an image of a Man dancing on a glacier

The night his attitude shifted yet a bit further was supposed to be a big celebration. Brian, Lisa, Chad and their whole group of friends were going out to a party put on to celebrate the end of term. It was also Brian’s birthday, so he thought he’d consider it a kind of a birthday party as well, maybe even let it slip at some point and Lisa or someone would propose a toast. That would be nice.

Lisa and two other girls even glided low on the way there to stay within sight of Brian as he hiked through the snow-clogged utility areas between the towers, spaces reserved for service trucks, construction crews and waste removal. But when they reached the gleaming new tower where the party was being held 200 feet off the ground, Lisa streaked up to ask about the pulley, since it wasn’t visible.

And Brian knew before she came back down quite a while later that it was one of those “out of order” situations. Who knew if it really was busted? Sometimes they just didn’t want to deploy it. Anyway, they’d refused, insisted it was a private club. They weren’t required by law to always have the pulleys operational. They were very sorry.

So was Lisa. She looked downcast and truly torn as her two girlfriends took off toward the party. She bit her lip and looked troubled. Brian wasn’t about to tell her it was his birthday to boot. He wanted real friends, not pity.

“Go on!” Brian sent with forced bravado. “I’m going to enjoy the walk home. Clear my head. No big deal.”

She waved and followed her friends. Brian felt conflicted inside. On the one hand, it felt wrong that the whole group should have to change their plans, if just one of them was barred from the place. But on the other hand, he couldn’t help thinking that they would have been furious and all refused to enter, if it had been someone else for some other reason, such as the club wouldn’t let in Black people, like Chad’s buddy Leon, or trans women like Lisa’s friend Erin. But when it was because they didn’t want to unroll all their cable, that was just kind of sad—if you were Lisa—or not worth even noticing—for most.

Brian walked in the gently falling snow, not homeward but further on between the towers, The lower floors were almost all used for technical stuff and there were few lights, but there was a big moon that cast a pale radiance on the snow. He shoved his hands into his pockets and kept a steady pace to try to walk off his irritation and loneliness.

Being mad will get you nowhere with friends. He’d tried a few times when he was younger—with his best friends in high school—just to ask for some small shift in plans that would let him go with them. And they were quick to take offense. Some of the guys had accused him of “faking” or at least not trying very hard, saying he was just playing for pity or else too lazy to go work out, which they thought could have cured him.

Others had argued vehemently in Brian’s defense, but even those had stopped seeing him as a close friend to hang out with and come to see him either as a cause to fight for or an “inspiration,” because of how he wouldn’t let distances or physical obstacles stop him.

Brian’s boot slipped and he staggered, barely catching himself and looking up from his bitter ruminations. That was the self-pity his parents had always warned him away from, he supposed. And here was something to lift his spirits. A flat expanse, a dusting of snow over hard thick ice. He remembered now that there was a lake in this area, between the towers. He’s swum in it freshman year in the summer. But it was the end of winter now and the ice had been frozen solid for weeks.

Brian slid out onto it, one foot then the other. He crouched and then pushed off with one foot, twirled. The ease of motion reminded him of the way abled people flew. He started to hum under his breath. With no one out there to see, he felt free to move. He took a couple of test stomps on the ice and then started to move to the beat of the song in his head, one of his favorites from the audio-radio. Tap tap tap, slide, tap tap tap swish!

The song wasn’t actually very popular. It was one he liked because of its staccato rhythm, like fast walking. Fliers had nothing very staccato in their world. Everything was smooth, and their music and dancing was like that, always gliding, always liquid. Brian liked foot-tapping, even knee-slapping music. He kept going out onto the ice, moving with the rhythm and then jump and slide and spin.

He fell, of course. But it wasn’t bad with a bit of snow on the ice and no one to see his clumsiness. He got up and went at it again until his breaths came fast and a cloud of frozen mist rose up around him. He wasn’t even the slightest bit cold anymore.

“You… fun… beauty…”

The send was disjointed, barely containing words. Brian stopped instantly, his hands falling to his sides and his slide turning into a slow turn.

“No… stupid… stop…”

“Yeah, you think I’m stupid, do you?” Brian hurled the thought into the darkness.

“I’m stupid, not you!” The sound slashed through the quiet night with shocking abruptness.

Brian spun around. There, on the lower ledge of one of the towers at the edge of the lake, sat a girl—slight and tan with blue tinted hair. And she’d yelled at him. No one yelled with sound, unless they were doing a comedy routine on TV and wanted to depict someone completely anti-social.

Technology had made using voice and sound more common. Yeas ago, Brian knew, it had been just a secret code for the mind blind. But today, people watched videos and listened to audio music. With advances in education, now everyone knew how to speak and understand audible language, not just sending. But still except for long-distance communication and recordings, which could not be done mentally, audible speech wasn’t used and especially not in a shout.

The girl fluttered down to him, her face twisted up into an expression of distress.

“Sorry… sorry… sorry,” she sent.

Brian put his hands in his pockets until she touched down near him, skimming across the ice.

“I do apologize,” she said in a quieter tone. “I shouldn’t have interrupted you.”

“Why are you talking?” Brian sent to her. “I’m not dumb, you know. It’s my wings that don’t work.”

She shook her head and looked down shyly. “Please speak out loud. It’s really not my thing, sending. I can’t do it much at all. You saw. My thoughts don’t send well, and I receive even less than I can send.”

“Really???” Brian’s voice creaked. He’d spoken in class exercises but never to friends.

“Really.” She grinned at him. “I’m mind blind and mostly mind dumb. Just the way I was born.”

“Oh, damn. I mean,” Brian struggled for the spoken words, “You’re not… I mean, that sounds like calling me a crawler.”

She laughed, a tinkling, sparkly sound. “True enough. You sure weren’t crawling just now. It was beautiful. Really. I meant it. That’s why I got a bit over enthusiastic.”

Brian shook his head. Audible words came stiffly to him. He wanted to express in some diplomatic way, that he understood that she was being kind, but that she didn’t have to. Fliers were always more beautiful than his clumsy movements. Instead he just shuffled his feet around.

“I mean it,” she said, as if she could pick out what he hadn’t even sent, let alone spoken for her benefit. “Flying can be beautiful, but when we push against something, push away, we just keep going. There is something so beautiful in your movement. You… always return. You… you move like a heartbeat, in a rhythm.”

The wistful way she said it did make it sound like something worthwhile or even admirable. Brian glanced up at her. Her face glowed with enthusiasm. She actually meant it.

“I’m Carrie, by the way,” she said, putting out her hand. He automatically responded, clasping hands the way fliers did.

“What are you doing out here?” he stumbled, trying to think of something relevant to say. “It’s sure cold for flying.”

“It is,” she nodded. “But most people at parties won’t talk the way I can hear. I go to the U, so I’ve seen you around. But I guess, I gave up on social life a long time ago.”

“You? You study?” Brian was trying to construct in his mind how that would work. The professors always sent. There were videos and recordings and all but mostly you had to sit in class and receive sendings from the professor and the other students.

“Yup, I study.” Carrie grinned, looking just a little smug. “I have a tablet that turns the professor’s sends into a kind of code, designed for the mind blind to communicate. It’s just squiggles on a screen or even on paper. It’s called writing.”

“Wow! That’s amazing!” It actually felt like Brian’s mind was expanding as new realizations and understandings settled in.

“It isn’t perfect, of course,” she chuckled with a sideways look as he turned back toward the towers. “The computer makes mistakes and it’s slow. If the prof talks on and on, it gets seriously behind and starts skipping random parts, which can be a problem. But it’s better than nothing.”

Now, they were gradually moving off of the ice toward the shelter of the buildings, Carrie hovering near and Brian sliding and skidding as he went.

“I guess I haven’t let myself think about how much I have in common with other people with disabilities,” he admitted finally. “I wanted to think I’m just physically disabled. I mean, like, at least I’m not mentally disabled. You know, as if that is really the big divide, not between the abled and all of us together.”

Carrie nodded, flitted around a corner and pushed a buzzer to open a large garage door low on the tower they were near. “We have a way in for… well, gimps of all kinds.” She coughed out a laugh. “This is my place. We even have stairs. You’re welcome to come up. And yeah, I know. You’re not the only one to feel that way.”

“I really… I mean. I don’t mean to be offensive.”

“Not at all,” she said, her warm eyes showing that she really didn’t mind. “It’s the world we live in. We’re taught to judge each other as less than perfect. Flying and sending are so-called normal. But there could be a world where everyone walked and used sound to communicate. There, we’d be normal. My body and brain seem fine to me, as long as I’m with my mind blind friends. And you sure look like you have a good body.”

Brian went through into the warm entry room and started up the stairs—the most normal thing in the world, and the rarest.

The long road to "That isn't on me."

A young girl wrote wrenching words to a group I’m in. So young. A pretty, thin teen with charcoal hair, umber skin and eyes that clearly move non-traditionally. .

She said she was struggling with the concept that she would never be able to do so many things she wanted to because she was born blind: ”I wanted to drive a car, sneak out with friends, go to parties, have a sleep over… And I wanted to see and flirt with cute guys. That was the life i was excited for. Now I’m realizing it wasn’t meant for me.”

A lot of people wrote back, telling her to believe in herself, not to set limits on her dreams. “Blindness doesn’t have to define you…” But others admonished her for appearing to ask for sympathy, even though this was a support group for blind people, not exactly mixed company. “Don’t fish for pity…” Yadda yadda yadda….

But I read her words over again and sat lost in thought. This girl wasn’t limiting her dreams. I don’t hear her saying she can’t be a scientist or a professional athlete or president. I hear her saying some very real things. Yup, driving a car is out for us. We learn that early on.

But then there are the other things—the social life, the little crowd of friends, the parties, the giggling under the covers when a friend spends the night, the staying out ‘til the streetlights come on or sneaking out afterwards.

Image via Pixabay - Two girls with arms around each other’s shoulders pumping their fists with a bleak gray background.

Image via Pixabay - Two girls with arms around each other’s shoulders pumping their fists with a bleak gray background.

That isn’t a girl limiting her dreams. She has a couple of friends, kids of her parent’s friends, who have known her since before her difference was “weird.” But they also have their crowd and the cost of inviting along one’s geeky blind childhood friend with the creepy eyes is steep. There may be someone out there who would do it, but most blind kids aren’t lucky enough to have a badass, social daredevil for a friend.

This girl isn’t limiting her dreams or fishing for pity. She’s just expressing sorrow over coming to grips things that are denied to her. She’s young and she has probably been told she can do “anything, even if you’re blind” by people who mean well and who also don’t want to feel uncomfortable emotions. And she’s starting to find out that it’s not entirely true.

If she is making a mistake, it is only in lumping the social things together with driving a car, as if they too were a natural consequence of blindness. They aren’t. But I didn’t know that when I was that age either.

I remember being fourteen and noticing the blurry sunlight in my bedroom window turn orange, signaling the end to another solitary Saturday in June, listening to the happy yells of teenagers in the alley through that open window. That day—for the first time—I knew where the party was. Someone had let it slip within my hearing at school. I didn’t know who lived there, but it was just a couple of blocks over.

I put on my jean jacket, which had once been fashionable back when I went through a phase of studying fashion and trying really hard to be “with it.” I put my hair in a scrunchy and walked the two blocks to the place where the party was happening. I put a smile on, carefully rechecking it internally—not too big or obvious but enough to be friendly. The door was open with music blaring out, so I walked up the steps past a couple of guys sitting out front.

No one acknowledged me. I couldn’t see their faces. But my little bit of residual sight and their breathing and low conversation told me they were all guys. They might not even really know me, but I could tell they were my age, not grownups. I slipped into the doorway, which was festooned with streamers. The bold, cheerfully brash tones of the 1980s screeched from speakers and the sound inside was so loud that most of my skill at echolocation was wiped out.

There were girls dancing just inside. I could tell by their dim silhouettes and their giggles. There was a burst of laugher and someone slammed into me, pushing me against the wall and sloshing a drink across my chest. The girls erupted into gales of laughter. Then they were gone, scurrying away into the crowd of amorphous shapes.

I looked down and sniffed. Sprite. Well, at least it was clear and only a bit of my shirt was wet. I was used to rough and tumble with two brothers, so I wasn’t immediately sure that I wasn’t welcome. I stood against the wall for a long time, observing as best I could and trying to look friendly and “with it.”

I could hear the occasional voice I recognized from school. I didn’t know the names to go with those voices. The other kids were only ever introduced at the beginning of the year and then they only said their name out loud once in home room. That wasn’t enough to capture the voices and put names to the kids nearest me in school. But after a few months I did know when kids from my class were close by from their familiar voices.

Even so, no one spoke to me. A few dancers stepped on my toes or pushed me aside a bit with gradually increasing force. But no one directed so much as, “oops!” to me.

Finally, someone whose face I couldn’t see came up and took my shoulders, steering me toward the door. And I went. I made sure I was steady enough to keep them from pushing me down the steps, but I didn’t resist. I walked home along the sidewalk, my head up, pretending I didn’t care.

It wasn’t the first time I experienced that kind of cold shoulder and rejection, and it wasn’t the last by a long shot. But it was the last time I tried just going to a party put on by my classmates that I had heard about. And it was the only private party for teens I went to during high school.

Nope. No one ever invited me. There were a couple of kids I was friends with at the three different schools I attended during my teens, but they weren’t either the partying type or in a position to throw a party.

Is not getting invited to parties the worst thing in the world? Of course not. I lived in a sheltered, nice small town. I didn’t have to worry about hunger, violence or familial abuse. A lot of teens have terrible problems that I didn’t have. But when I crept out my window on Halloween to roam the streets, I did it alone, a real ghost walking in the dusk with kids speeding by, shouting and laughing in their own pursuits.

I wanted so badly to be part of a happy and inclusive crowd, to feel friends’ arms around my shoulders from either side, to share my excitement with someone, to laugh at their jokes and to know that if I fell behind they’d reach out pull me along because I was one of the pack.

All these years later, I know what the pretty teenage girl is talking about. I listened to well-meaning adults back then. I went to a self-esteem building program called “Wings” and I chanted affirmations before going to bed every night. All those messages from adults warned me that the worst thing a person with a disability can do is to complain or elicit sympathy from others.

Now, with the experience of an extra thirty years, those people telling this girl not to “put limits on her dreams” or “fish for pity” make me want to gnash my teeth.

Instead, I wrote to her: “I hope you know that you can do all those things as well as anyone, with the sole exception of driving a car. The problems you have doing these things are what we call a ‘social construct.’ It isn't ‘meant to be.’ It isn’t God or biology or your body that has taken those things from you. I snuck out of a windows as a teenager. I was quite good at it in fact. But no friends ever did it with me because I had eyes like yours. These things were ‘off-limits’ only because of social constraints.”

“As for putting limits on one’s dreams, I have been a war correspondent for The Christian Science Monitor, a major international publication. I have published ten books and travelled in 35+ countries. I am raising two kids. I have built rock walls with my own hands. I have fed my family by farming the land. Believe me. I am not a blind person who puts limits on myself or spends time in self pity or in fishing for other people’s sympathy.”

“But society does put limits on me. For years, I beat myself up mentally because I wanted what you want and I thought it was me that was the problem. I thought I should learn to accept it. That’s what my mentors told me. And they didn’t blame me exactly but they implied that the exclusion was my fault, or at least a consequence of being visually impaired. I thought I just needed to try harder.”

“Now I’m almost forty-five and I want to tell you that that is bullshit. Certainly, avoid putting limits on your dreams. But your words don’t sound like that to me. I was a nice, friendly girl with a ton of interests and a good sense of humor. But I didn’t get to go to parties and I had precious few sleepovers, almost entirely with the kids of my parent’s friends. I didn't limit myself. Society and prejudiced people did. I was outgoing and friendly. I got kicked down, told ‘Oh, it's just for us and a few close friends!’ or ‘Maybe sometime!’ or just given a cold shoulder so many times there is no counting. That's society. That's prejudice, even bigotry. Call it what it is. Don’t blame yourself and I hope the people telling you to try harder and implying you are fishing for sympathy are reading this too, because putting this on you is abusive.”

“I wish I could give you a hug. I hope you will find your own dreams and follow them. But I’ve also got to tell you that this crap that is social exclusion has nothing to do with you. It’s all on them. I’m sorry to say that it isn’t likely to change soon, but you will find the occasional person who is open-minded and a real friend. Value them and give them your best side. Try not to let the negativity of bigots make you bitter, so that you can still turn around and be a good friend to those who are ready. But don't blame yourself because it just isn't about the blindness. It's about the same old sickness of our society that brings racism, sexism and all the rest of it.”

That may seem harsh, calling kids “bigots” because they don’t invite the blind girl in their class to a casual party. But that is actually putting it mildly and with a large dose of emotional distance.

I did meet a new friend that same year—when I was fourteen—who was ready to be friends with the blind girl next door. At least a little. Like a lot of friends, she didn’t act like she knew me in public. That was okay with me. Or at least it was worth the price. She was a good friend and we shared real interests, like the medieval history club.

Life happened and even though my life took me away from that small town and around the world over the next couple of decades, circumstances brought that friend a lot closer and into the circle of my family. There have been a lot of times when social things were tough, and I’d think of the handful of people I could really count on—my friend from that old neighborhood among them, even though thousands of miles lay between us. We’ve supported each other through some very tough times.

This past year, divisions split many friends in the US and while we agree on almost everything, there were some things we didn’t see eye to eye on. There came a moment when my friend was so angry that she lashed out at me in text.

As happens with a lot of arguments, my friend made it personal. But instead of just calling me argumentative or selfish or closed-minded or insulting my sources—all things that could at least be rationally argued—she went for my disability and my writing about my experiences, accusing me of making up the social difficulties related to my disability in order to “manipulate people and get sympathy.” To be clear, the argument wasn’t even vaguely related to disability or social exclusion.

I know my blogs have increasingly become about disability issues and maybe it bothers more than just this friend. I appreciate everyone who takes the time to read my blogs, whatever your reasons. And I can see that it might seem like I obsess about this stuff, if you go on what I write here.

But the truth is that I rarely talk about these things in offline life. Last night, I mentioned something about my vision to a local friend because I had just spent the day seeing a major eye specialist in the city, and I was surprised at her shock. Then, I realized that I never talk about this stuff in person, even something innocuous like saying that I went to the eye doctor.

I spend most days thinking about kids, chickens, gardening, teaching students, preparing lessons, cleaning, cooking, doing the dishes, making crafts and now homeschooling. I don’t have a lot of time for disability issues, even being socially isolated enough that Covid lockdown barely changed my life at all.

Maybe that’s partly why I write about it, because it is an otherwise neglected part of my life. But I know it is also because these are issues I don’t hear anyone else talking or writing about. Or at least very little. And yes, while I don’t focus on the social impacts of disability every day, they underlie my whole life. They are defining factors that I have to take into account, like gravity or Covid. But unlike universal restrictions, that social exclusion is something I observe only affecting me and other people with disabilities.

So, I write because it is needed and silence hurts.

I don’t write this stuff to garner sympathy, and that’s fortunate because I haven’t received much sympathy since I started writing here. Instead, I have developed some great connections with people who experience similar things or who want to understand reality better. But even that isn’t really the point. The point is that I am a journalist. I write the things that need to be told and things that the world needs to hear. That’s just what I do.

If you’re a reader who came to my blogs for the general social justice stuff or to see what it’s like to live in the Czech Republic or to get books or to learn about herbs or earthy spirituality and you find my posts about social exclusion, disability and societal prejudices to be uncomfortable and out of touch with the reality you know, I hope you’ll bide a moment with your discomfort. It is okay to feel uncomfortable.

When someone tells about social injustice that they experience, the rest of us often feel an obligation to do something. And that is why it can seem like they are complaining or trying to manipulate others. But the fact is that there is no specific action I am asking for. It is really the understanding and the awareness that will help. If anything, share a post that opens you up to a new and uncomfortable reality.

But mostly just be open to the perspective. That openness alone will create the change we all need in this troubled world.

It is a stereotype like any other negative stereotype, that people with disabilities—or at least some of them—are “fakers” and “complainers.” Partly that stereotype comes from the (often-subconscious) fear abled people have of the inevitable disabilities of old age.

Partly it comes from the kind of jealousy my children have of adults. “You don’t have to do chores and homework!” They can’t see how much adults do have to do. Abled people see disabled people getting a few little curb cuts in life, and many think we have it easy and enjoy a little mooching… or that SOME of us must be faking or exaggerating just to get the bennies or at least to garner a little sympathy.

Just like I explain these things to my kids, you have really got no idea. The only breaks disabled people actually get are things that society has figured out will make us cost society a lot less because they allow us to deal with our own lives by ourselves better. That’s it.

Frankly, the only time I ever got “sympathy” for being blind was one time when I was a kid and some lady at a bus station prayed over me and it was a distinctly strange and uncomfortable experience. Most people with disabilities avoid “sympathy” like the plague for precisely that reason. It might feel moderately good from the giving end, but it is usually really weird and unrewarding on the receiving end. And that’s real sympathy, not even the toxicity of pity.

More than anything, if there is one thing I do want to try to manipulate people into it is to refrain from making abusive and prejudiced remarks that hurt people with disabilities. It doesn’t really matter if you once somewhere heard about a person faking a disability to get something or an actually disabled person trying to manipulate people’s sympathy, please don’t use that stereotype as an accusation or an automatic way to discredit a person with a disability in a disagreement.

That accusation is exactly like using racial epithets or calling a woman the slang equivalent of “sex worker.” If you go there in an argument, it isn’t about the argument or the person you’re arguing with. That’s on the person using the bigoted remark. It is a sickness that is within those fostering prejudice.

That isn’t on me. It isn’t on us.

Isolation is hard, but I already knew that

The past month of national coronavirus lockdown has been hard on my family.

We have a kid with serious behavioral, psychiatric and learning disabilities and another kid with dyslexia. We are coping with the excessive demands of insensitive and disengaged teachers. We’ve been learning to cook from scratch faster than ever before. There have been a few weeks in there where supplies were hard to come by and we had to get creative with our prepper techniques.

But I hear a very different kind of suffering echoing across the internet. Other people are suffering from social isolation, a loss of control in their lives and a complete disruption of their routines. Anxiety levels are skyrocketing and clinical emotional problems are exacerbated.

For awhile I was a bit mystified, at times even dismissive. How can all these people be so wimpy? Most of them don’t have kids with complex challenges and no one is emailing them with threats of failing grades for an assignment that was thirty minutes late due to internet problems. They’re just stuck at home, alone, resting!

I always did have sympathy for the people stuck with kids in small city apartments, but oddly those aren’t the complaints you hear most about. By and large, the loudest wails of distress are coming from the privileged suburbs. Those who I expected to be most vulnerable seem to be stoically silent.

At first, I wondered if this was because they didn’t have access to the internet. I contacted a friend who is a single mother in the inner city and asked in depth about their well-being. She assured me that they were coping well. She can still go to work and her ten-year-old has been semi-parenting and supervising homework for the eight-year-old and the seven-year-old for years already. Homeschooling them and herself isn’t that much more. They’re used to hard times.

I shook my head in wonder and went back to my own struggle, feeling decidedly inferior to the ten-year-old in the inner city.

But as the weeks have passed and I have observed the struggles of others (and read a certain amount of psychological analysis), I realized something significant.

That social distancing that is causing so much havoc for so many people… I know it well. I’ve lived it for years as a socially excluded person with a disability. The amount that I leave my house has only decreased slightly, despite the fact that we’re on national COVID-19 lockdown with only essential supply runs allowed.

Photo by Arie Farnam

Photo by Arie Farnam

My social contact has only been reduced a little, since there was very little of it to begin with. The only change in my daily routine is that my kids are home and I can’t do my work because they are so overwhelmingly needy and their teachers are insanely demanding.

That loss of control in people’s lives… I have always lived in a world where I had very little power in the outside world and I was forced to make harsh choices to build a life I love in the small area I can influence.

For years the decisions of others to exclude or include, to harm or to take have hit me like successive waves that I was powerless to deflect. My only power was always in how I took the waves and what I did with driftwood that washed up.

And that disruption of routine and the resulting rudderless confusion… I remember when I was in my twenties and I first left the shelter of structured education. It was terrifying for a few years. I spent almost every day alone. My work was independent and no one was giving me daily feedback. I had to create my own structure, my own schedule and routine. If I got any reward or consequence for my work or lack there of, it was in terms of months, rather than minute by minute or day to day.

And it was hard. I recall the months I spent struggling against depression, sitting among the boxes in a little room I rented at the time in a city where I had few friends and no family.

I knew that my life was in my own hands, that I had to get up and do the work despite the isolation, that no one else would do it for me and no one would help me. It was paralyzing and demotivating and such a heavy load.

As I start to realize these things, my empathy grows in bounds for the people experiencing this for the first time. Suddenly, the people who were out in the free world, who had a social life and regular jobs and culture and community have been thrown into a life that is much more like mine.

I remember the six years I spent almost entirely alone—often on two-week bouts of lockdown and enforced rest—while I struggled with intractable and medically unexplained infertility. I remember the many resolutions I made to study something, to use my open-ended time wisely, to be calm and to practice good grooming habits. Day after day, month after month, I started new schedules and forced myself into healthier routines.

Then as an inexperienced, new mother of traumatized children adopted from Eastern European orphanages, with no women friends to advise me, I spent the baby days battling the demons of despair, guilt, shame, depression and extreme loneliness. Without the ability to drive, it was nearly impossible to get to mommy-and-me classes for toddlers and when I made the mile-long trek into town, other mothers told me that my inability to make eye contact due to my disability made me unacceptable for their group.

So, I made my own music circle with my two kids. I put up colorful posters on the walls. I had an art project scheduled for every day. I tried to teach my preschoolers to cook. I started early reading programs with them and learned to garden.

But it took years! I’m not bragging. I’m aching for all the people facing isolation just now for the first time. If it feels really really hard. That’s because it is.

I’ve been there. And I didn’t overcome it in a few days or a few weeks. I did overcome it, but it took years.

In the end, I did learn a lot of great skills. I can now make my own schedule and I get up happily before dawn, meditate and go out to tend to my garden and animals all before the kids get up. But I didn’t start out that way. I was a wreck, a mess, like a lot of people report being a mess now.

It might help to listen to those people you know who have traditionally been somewhat isolated. Ask them how they stay sane and healthy. If you’re struggling with this, consider that while whole societies being at home in lockdown is unprecedented, you aren’t really the first people to experience it. And those of us who have known isolation and didn’t succumb to extreme depression, addiction or unhealthy living have skills that you can learn.

I have read several self-care articles out there on the web that try to teach these skills and I remember when such things sounded very unrealistic to me. They tell you to keep to a routine, to try to set a time to get up, to shower and get dressed as you used to when you had someplace to go. They tell you to eat regular meals and make sure they’re healthy. They tell you to limit your time staring at social media and scary news reports on TV. They tell you not to beat yourself up mentally when inevitably you fail at all of this.

So from experience,, are they right?

Yup, they’re right. Routine helps. A lot.

Regular bedtimes and waking times help. Personal hygiene isn’t just for the physical health concerns. It really helps the whole situation. It helps you feel purposeful and gives back some of that sense of control. Healthy eating and healthy sleeping both have major psychological effects. And I can’t tell you how many times I’ve paid the unpleasant price for wasting half a day on social media.

But the thing I rarely find in these lists, the skill that I think I developed over time that has helped the most, is actually making a schedule for yourself with a purpose greater than daily survival in mind.

About ten years ago, I realized that my life was probably never going to change, that I was never going to be accepted and welcomed into the community and a wonderful group of friends. And somehow, against all the weight of years of depression and media programming that said friends are the sum total of a person’s worth, I decided to build a happy life anyway.

I started building it step by step, by deciding what I wanted in my life and scheduling it. I scheduled a daily spiritual practice and did it.

For the first few years, I didn’t manage to do it every day. Then there came a year that I did manage it every day, except once when I was really sick. For the next two years, it felt like an accomplishment. Then it became indispensable and something I would never voluntarily miss.

I’m close to that level on daily exercise, but not quite to the point where it is automatic. I have managed to get daily contact with nature, animals and gardening into my life. I’ve managed to make daily writing part of my life.

I now manage to keep a schedule for my kids schooling despite their vehement protests and natural disinclination. I manage to have regular and healthy meal times for the whole family. But it all started with scheduling a few things I wanted in my life, like spiritual practice and exercise.

If you’ve read this far, you are intrepid and I know you can do this. Focus on the essentials and on your core values.

Here is a method for developing a fulfilling life even when you’re in isolation:

  1. Figure out a practical routine of waking, grooming, eating and sleeping that actually works for you in your given situation.

  2. Set alarms and push yourself to stick to it.

  3. When it falls apart, look at the routine and the clock and get back into it at that point. Don’t spend time and energy berating yourself for being lazy or lacking self-discipline. Like they say with meditation, just gently return to your focus.

  4. Once those basics have been mastered, you will have somewhat more energy and less chaos around you. Use some of that mental space to think about your core values and what you really want in your life. If you have to work at the same time, consider your work to be one of the priorities.

  5. Write down your daily routine with times when it works for you to fulfill it. How strict you are with those times depends on your personality and whether or not being relaxed about the times results in the routine being fulfilled or results in chaos. Learn from disasters and adjust the routine as necessary. There’s always another day to practice on.

  6. Then choose one thing you really must reintegrate into your life. That could be the thing that provides income or it could be physical exercise. Both are essential. But choose just one for now, and write it into your time schedule. Try it for a few days.

  7. Then choose the next most important thing and write that into the schedule.

  8. As you add more priorities to your life, you’ll run into problems. Some things take longer than you think. You may start to experience real fatigue again and need to adjust your sleeping hours. Tackle each issue as it comes. There is nothing you can’t fix or at least improve.

  9. When you have integrated the priorities you don’t want to live without, stop adding things to your schedule, at least for a while. Get the schedule down really well before adding optional extras. Then when you add something else, pay attention to the effect on your whole daily routine.

This is the basic method. Of course, it sounds easier than it is. If it was easy, everyone in quarantine would be fine. But I know from experience that it can be done. It can be done alone and it can be done with a spouse and kids. Each variation has its own challenges. The key is focusing on building a life that you enjoy, bit by bit.

A word about self-discipline: Yes, self-discipline helps. But society tends to view it as something you have or something you don’t have. Many people will fail at this routine again and again and think that means they lack self-discipline. The thing is that the discipline is the starting over every day. That’s the crux. Yes, there are people for whom sticking to the routine is easier and some for whom it is harder. Some of that is about tenacity but a lot of it is about whatever circumstances you find yourself in. The discipline part is failing and getting back at it again… and again… and again… and again.

A note about depression: Your propensity to sink into depression in isolation or due to failing at your routine is largely biochemical. You can’t entirely control whether you do or not. Healthy food, meditation, positive thinking techniques, contact with friends and (pleasant) family over the phone, exercise and sleep will all help ward off depression. Comparing yourself to other people with different biochemistry generally will not help.

A note about purpose: One of the greatest and least discussed antidotes to depression is purpose. You can’t feel purposeful very well unless you have mastered the basic routine, but once you have, it may help a great deal to choose something you want to accomplish during this quarantine time. It can be as simple as building some abs through a lot of exercise on your yoga mat in a small apartment, or it can be as grand as preparing applications for graduate school or writing that book you’ve always wanted to write.

If you are, like me, stuck in a situation where purpose is elusive because each day is still a massive struggle to get through even the basics, whether that is due to harsh physical conditions, crowded conditions or disabilities, you likely already know there aren’t a lot of simple answers. But keeping to a little bit of greater purpose still helps me.

Hang in there. Keep getting up, even when it feels hopeless and useless. The use is always in the fact that your life will be more enjoyable if you create your own routine and schedule, even if just vegging out may feel enjoyable in the short-term. You’ve probably done that enough by now to know it doesn’t actually pan out that way.

Stay in touch with those you love far away, stay awake inside yourself and build what you want your life to be like within the external conditions. These are the things I learned through isolation.

To take no shit or to tough it out - a rebel's view

I’m going to write about an incident here that I have never openly acknowledged before. I didn’t promise to never discuss it. There was no non-disclosure agreement, but I’m sure my high school principal assumed there was a gentlemen's hush-hush agreement.

He should have known. I’m no gentleman. Part of the point was that I’m not a man at all and was not a boy.

Creative Commons image by Craig Cloutier

Creative Commons image by Craig Cloutier

I graduated from high school in a desert town so small that they changed the population sign when my family moved in from 150 to 154. My father was a rookie teacher and had to take whatever post came his way. The sophomore class I entered had six students. I got a study-abroad scholarship and spent my junior year in Germany, but I spent two years with them.

By the time I was ready to graduate I was also more than ready to get out of that tiny desert town. I had again lined up scholarships, this time to an exclusive, liberal arts school half a continent away. I had big dreams of international journalism—and more importantly—escape.

My grades and SAT scores were enough to land the scholarships. The other kids mentioned something about me being valedictorian and I was surprised we would have one with so few of us. Even so, I wasn’t without competition.

My study-buddy Faye, who was one of the best friends I had during my entire school career, was college-bound and savvier than me about most things outside of books as well. She would no doubt have had straight As, if her home life had been more like mine—i.e. stable, two-parents, and you know, a house with separate rooms for each kid rather than a tiny trailer.

But as it was, she wasn’t even in second place. I won’t pick on the kid who was by name because I doubt any of this was his fault, though his parents might have been involved.

In the early spring of my senior year, I was called into the principal’s office and told that I wasn’t going to graduate. I already had a college settled and full scholarships. The news hit me so hard it literally knocked the breath out of me. The principal said that, although the school had initially agreed that my credits from Germany would be accepted without any grades being counted against my GPA, he had determined that that wouldn’t be possible.

He gave me two choices. I could either repeat my junior year to make up the credits or take the grades given on my German report card into my GPA and accept that “pass” grades, of which there were several would be counted as Cs.

I had even gotten a real C on that report card—in third-year chemistry. I had never taken first- or second-year chemistry and it was in German. The teacher was a sour-faced traditionalist who probably was being “charitable” by her standards in giving me that C. I couldn’t follow the class at all and there were no accommodations for the fact that being legally blind I couldn’t see the chalkboards or read the tiny-print, light-blue-ink books.

If I accepted those grades I wouldn’t be going to college at all, given that my scholarships would evaporate. There was no way I could work my way through school without being able to drive or do the hurried physical labor of most minimum-wage jobs at fast-food restaurants. The principal maintained a level, uninterested tone as he delivered this soul-destroying ultimatum.

I went home in tears and was confused by my parents’ strange lack of concern.

Most of what they said was a blur to me, but I remember my mother at one point stating, “You need to stop grabbing everything for yourself.” Finally, I got what she meant. My mother was always fanaticly against selfishness and at one point she hinted that it was understandable and even justifiable for the town to want the son of a prominent local rancher to be valedictorian, rather than an interloper who had only been there for two years.

But it was my father who explained it to me plainly. I would not be allowed to graduate as valedictorian. It wasn’t actually impossible for me to graduate with a good GPA, but no one could say out loud that the issue was who would be valedictorian in our class of six. However, my father also didn’t seem to think that taking another year of high school would be such a bad thing, even if I had already taken every class the school offered and more than half of my senior year had been independent study and distance learning classes.

I was an emotional and loud-mouthed teen and I cried bitterly over it. I wanted more than anything to lash out, to go into the school yelling and demand justice. I wanted to talk to the other girls and tell all. This was what my parents made me understand I must not do. If I made any kind of fuss, I really would not graduate or would graduate with a GPA that would erase my scholarships.

It was my first major lesson in bowing my. head to injustice and keeping silent, and I think my parents thought it was a good and needful lesson in general, because I had given them a lot of mouth over the years and had a reputation for yelling, “It’s not fair!” at the slightest provocation.

They didn’t tell me exactly what to do or say, but I was actually a quick learner. Figuring out what to do wasn’t the hard part. It was swallowing the bile in my throat that was tough. I didn’t need the accolade of being valedictorian. That wasn’t really the issue.

I was a teenager and so at least somewhat selfish, but I think if someone had come to me and said, “Hey, you have your college thing worked out. Can we let one of the other kids have this valedictorian thing so that they have a fighting chance?” I would have given it up willingly. I just hated being scared out of my wits during that terrible moment in the principal’s office and bucked at being forced by authority to bow to something blatantly unjust.

Still I managed it. I walked back into the principal’s office a few days later, folded my hands in my lap and tried to put on a show of being a sweet and submissive young girl.

“I see that some misunderstanding has come up here, and I think we can solve it easily,” I said. “When I went to Germany, I agreed with the school that my grades would be counted as pass/fail, and clearly pass/fail grades can’t be counted toward someone being valedictorian. Having those pass/fail credits obviously makes me ineligible to be valedictorian, even if they don’t change my GPA.”

The principal was silent for a moment and then nodded and made a gruff sound of assent. It was settled and not a word was ever spoken about the matter again. I graduated with a 4.0 GPA and went off to college. I don’t know what happened to the kid who was valedictorian, but Faye, who wasn’t, became a lawyer for labor unions and did just fine.

A few more times in my life, I have had to formally bow to injustice. Once I was told explicitly by a hiring editor at a newspaper that I wouldn’t be hired because of my disability. I could have spent the best years of my journalism career finding a lawyer willing to gamble and suing the guy, and I might have won. But instead, I swallowed the bitter pill and went my own way.

Another time an editor insisted on switching the sequence of events in a news article I had written. I wrote that the NATO-led bombing of Kosovo in 1999 preceded the flood of Albanian refugees leaving the province, and showed that the newspaper’s own archives backed me up. But my editor stated that it was “policy” to say that the NATO-led bombing came only “in response to” the flood of Albanian refugees, “forced to flee” the province.

It was the clearest instance of political censorship I encountered as a journalist and I felt a bit like Winston in the book 1984, when he held incontrovertible evidence of vast lies in his hand for a brief moment. But I was a rookie reporter, scarcely more than a kid, and I was beyond grateful to have the relationship I had with that editor.

The bit of backbone I showed that time was to request that no false statement should appear under my name. I asked the editor to either remove my name from the article or allow me to rephrase that part vaguely enough to skirt the issue. We agreed on the latter solution.

Why am I digging all these skeletons out of my closet at this point? Mostly because I had pretty much forgotten about those incidents and when reminded of them, I realized that no one involved in any of those incidents has any power over me any more. I can say these things and any sanctions that might be brought against me can no longer harm me.

The same can’t be said for the situation I found myself in last fall with the climate action movement Extinction Rebellion. There, I was asked to keep silent about abuses of power and to accept being the only person explicitly excluded from leadership positions because our leader took a dislike to my questions and inability to swallow hypocrisy.

The stakes for me were emotional and social this time instead of the future of my education or my job. That’s a blessing of sorts. While the climate crisis threatens all of our survival, this exclusion and discrimination didn’t threaten my personal survival. It only threatened to cut me off from friends and a source of hope that the movement had become to me and many others.

Finally, the stress of being constantly blocked and excluded by those in powerful positions along with the demand of the organization to keep such issues quiet became too much. The impact on my emotions, physical health and even family life was getting out of control and after a particularly rough period of two weeks of daily harassment by one person assigned by the power clique to hound me, I did what they wanted and simply ceased all contact with the local Extinction Rebellion group.

I still text with friends inside the climate action movement and my friends have asked me to come to talks with the leadership. I understand why my friends ask it. I was a powerhouse of positive energy when I was part of the movement and my work involved supporting others rather than the power games that have poisoned our corner of this otherwise admirable movement. My friends who are committed both to real climate action and to a healthy internal culture in the movement want me back.

But those who excluded me have their own reasons for holding the talks. I was far from the only one to run afoul of them and they are understandably under fire for their unethical tactics in an organization that claims to be both supremely inclusive and non-hierarchical. I was one of the more prominent people to run into trouble, however.

The small group being paid “expense assistance” to run the “all-volunteer” organization would like to erase the stain on their reputations (and possibly even their consciences) caused by them hounding the only significantly disabled leader out of our national branch.

This is a current crisis and again I am being asked to bow to injustice and keep silence about it. The last agreement they pressured me to accept was that I would be considered blameless (since there wasn’t anything they could find to accuse me of) and yet I would be excluded from positions of authority. In exchange, I would not be openly harassed and the big autumn actions we had planned would not be disrupted.

As it happened, I was still harassed. And the exclusion was much more widespread than the agreement hinted.

What will their next “agreement” offer? I can’t really imagine. I think I will go to the talks for the sake of the friends who have asked me,, but I will make clear from the outset that I will no longer bend and bow to hypocrisy and exclusion. I will speak openly about harassment and abuse of power. And if I am excluded and harassed personally, I will simply leave.

I am glad that I am no longer a child or a young employee physically under the power of others. The ability to vote with one’s feet without being destroyed is the very definition of empowerment.

Marginalized groups in XR: Will you come or will you go?

Macrocosm

Storm winds are surging within the climate justice movement Extinction Rebellion. Just as in a physical storm the clouds and waves are occupied with their own internal turmoil and any given droplet of water within them is both ineffective and blameless by itself.

In October, a small group in London claiming to be part of Extinction Rebellion mounted an unpopular action, blocking a subway station by gluing themselves to trains and climbing on top of trains during rush hour. The rationale behind such actions is similar to the actions blocking bridges and road traffic. The point there was not so much to be against cars as an unsustainable form of transportation. It was simply to sound a high, loud alarm.

The message of XR blockades is “STOP! Just stop business as usual! Pay attention! There is nothing as important as the climate crisis now!”

The reasoning behind it is that the warnings given by scientists, saying that we have a very limited amount of time left in which we can realistically avert massive disaster and uncountable deaths from hunger, storms and extreme heat, are real.

And we either believe that a consensus among ninety-nine percent of the world’s scientists is a serious matter, that facts are real and the laws of physics actually do apply to us, or we don’t. If we believe those things, there isn’t really any other common sense response than to do whatever it takes to bring about changes that might just be able to save millions of lives.

Photo by Arie Farnam

Photo by Arie Farnam

That’s the intention. Extinction Rebellion hasn’t distanced from the group of activists who carried out the London subway blockade because the rules of the movement are also real. If someone subscribes to the ten principles of XR, including non-violence, refraining from shaming, mutual support and challenging power structures, they can call themselves Extinction Rebellion. That is what the London subway blockaders did.

But the vast majority of XR members voiced vehement objections to the action. Some simply felt that the movement shouldn’t target reasonably carbon-light transportation alternatives, such as rail transport of any kind. After all, subways and light rail are the kind of things we need to be moving toward, even if Extinction Rebellion refuses to put out exact specifications for solutions.

The movement insists that a people’s assembly—chosen through a jury system, rather than through a heavily financed election—should decide how we move forward to solve the climate crisis. But rail transport is one of the non-controversial assumptions about what that solution will have to entail.

Others have more complex reasons for their complaints. The trains blocked in this particular action happened to come from some of the poorest parts of London, full of immigrants and ethnic minorities on the way to minimum wage jobs with harsh tardiness policies.

Extinction Rebellion is not immune to the accusations leveled at most environmental organizations that it’s a place for middle-class white people to work out their rebellious streak and generalized anxiety. Extinction Rebellion has made an effort since the beginning to keep a permanent focus on inclusion, but this action felt like a slap in the face to a lot of people of color.

One of the ten XR principles is “We accept everyone and every part of everyone.” It’s supposed to be inclusive and the small print talks about inclusion of every kind of vulnerable group. But some people of color have expressed that they don’t feel nice and cozy and safe when they hear this principle. Instead they immediately wonder if the white supremacist parts of some people might be included in that blanket acceptance statement.

There are other principles that point toward inclusion and much of the in-depth but technically non-binding structural documents that make up the DYI systems to set up XR branches in every city around the world go into detail about cultural sensitivity, inclusion and recognizing the different experience with police that people in vulnerable groups may have. Extinction Rebellion tries, but it is still an attempt at sensitivity by a bunch of white people.

“Rebels”. (as XR members call themselves) have employed a popular chant over the past year when police intervene to force an end to a blockade. “Police, we love you! We do this for your children!” has echoed in every English speaking country as well as quite a few where the words are foreign. In Prague, the Czech rebels at our October blockade yelled it in thickly accented English, while police hauled away 130 of our friends, injuring some.

And yet, black people back in the UK, where Extinction Rebellion started, and across the water in the US have said essentially, “Ahem, that’s not going to work for us.” Love just isn’t happening in the relationship between black people and the police in the UK or the US, where random police interactions with black people wind up with way too many black people dead. Most black rebels in these countries are not even sitting on the blockades and getting arrested.

While white rebels risk a night in jail, a fine and a misdemeanor record, black people risk their lives just walking or driving, let alone poking the police bear. It is less that black rebels don’t want to say the chant as it is that it sounds like white people wallowing in white privilege.

Now, after the Autumn Rebellion, many XR groups online and off are tackling the issue of inclusion. I’m glad they are because I see this as the Achille’s heel of this movement, which has achieved a great deal in one short year. If Extinction Rebellion fails to fuel massive public demand for climate justice at every political level, it will be because we fail the inclusion part.

That isn’t just because we should be good people or that we need the numbers that vulnerable groups could provide by joining us. It is most importantly at the core of what has made XR successful so far. We should include people of color, people with disabilities and all the other vulnerable groups not for their sake, but for everyone’s sake. Everyone has some vulnerability and it is when we see those more vulnerable than us truly included that we can fully commit our energy, time and resources to this kind of effort. Inclusion isn’t just for those we shouldn’t exclude.

When it is there, it permeates the entire culture. When it isn’t there, no one is safe, and social interactions are a constant battle of individuals trying to stay in the center of the herd, furthest from exclusion.

Microcosm

When I first joined XR, I was glad to find that no one made much of my disability. They were happy to try to accommodate my vision impairment by letting me know who was who, and I was so grateful to be treated a bit better than the immediate social stereotyping and dismissal that I encounter on a daily basis in society.

But as time went on and more and more people joined XR, I have watched that early focus on inclusion fade and thin. New people often come from a non-activist environment and they bring with them the exclusionist assumptions of the wider society. Those who have been there longer are tired and desperate to reach some kind of tangible goal. Inclusion starts to feel like a luxury we can’t afford.

I have been reticent to write openly about the difficulties I’ve run into with exclusion within XR over the past few months, because i too am focused on the ultimate goal. But the events of recent weeks around the world have convinced me that we must talk about these things openly. Because it is exclusion that will take us down.

It is not a luxury. It’s the heart of the matter.

There may be a few exceptions, but by and large the people who join XR are open-minded and informed. They are people who believe in science enough to put their regular lives on hold and do something about a crisis that for most of us—in white-majority countries at least—is still largely theoretical. They are also demonstrably people who take personal responsibility and eschew laziness, because rather than simply talking about the crisis, they are doing something.

These factors mean that even though XR has people from both the political left and the political right, most are already tolerant, nice people. They don’t think of themselves as racist, ablest or otherwise exclusionist. Many even consider themselves actively anti-racist or anti-ableist. And a lot of them feel like this should be enough.

But as with the London subway blockade and the police chant, it clearly isn’t. For me, as the only significantly disabled person in my local XR group, I have to agree. My group has been wonderful in consciously working to include me. I truly appreciate that, and yet I know that most people with disabilities in my place would have left long ago and I am constantly close to leaving the group myself.

I asked a friend who uses a wheelchair to join and she just laughed ruefully. I couldn’t really argue. The group says they want a person in a wheelchair at the blockades because it would make for good press photos, but no one has ever even mentioned the fact that we’ve never held a meeting in a place that was even remotely wheelchair accessible. They want a person with a wheelchair as a prop, not as an organizer.

There are two categories of issues I can identify that cause me to feel excluded in the group even without the issue of physical accessibility. which given the conditions isn’t really their fault.

First, there is a tolerance for intolerance, as that principle about accepting all parts of everyone implies. While most people are inclusive and welcoming, there are those who are not and the group not only tolerates them but insists that I must tolerate them. If I speak up, even very discretely about exclusion and hate directed toward me, I am told that the urgency of our goal demands that I tolerate it and don’t rock the boat.

Second, there is a lack of understanding about the effects that exclusion in the wider society have had on me and a marked lack of tolerance for any reaction I have to social exclusion.

In one prominent example, a person in a position of power in my group decided early on that she did not like me. Her explanation focused primarily on communication issues, specifically that some of my texts were too long. Being a writer, I can be a bit wordy, but when I can, I go back and edit. Written communication usually isn’t a problem for me.

But in this case, we were using a phone app for daily communication within the group. I can’t type on the tiny phone screen very well because it is too small for me to see, so I was dictating my texts. This meant that my texts were especially long. When we speak, we naturally use more words than when we write. To add to this, editing on my phone in extremely small print is next to impossible for me. Yes, blind people use audio interfaces that make it technically doable but it is excruciatingly slow. Sometimes i do spend literally hours editing a few texts for the group to make things readable. But most of the time, with my work, household, children and all, I didn’t have time. I just dictated texts and sent them, oral vagueness and all.

So, the dislike this person initially developed toward me was based on something that was a symptom of my disability. She is a person steeped in European good manners and social justice thinking. I am certain that she would never intentionally exclude a person over a disability or some other irrelevant trait. But she did—likely obliviously—develop her antipathy for me over something that was part of my disability.

She and the rest of the group chose to call it “a difference in communication styles,” and despite my explanations, refuse to see it as disability related or reconsider her conclusions. When she initially adopted her negative view of me, I was utterly confused. We had, only one day before, had a wonderful conversation in which she told me that I would be working with her closely and expressed a lot of support for my work in the organization. And then suddenly, I was cut off from communications and told that she no longer wanted to work with me.

She later said that my reaction shocked her. After a lifetime of social rejection and even complete isolation for years at a time, I don’t take abrupt, unexplained rejection well. My first reaction was to cry, then to try to defend myself and later to bargain. For so many people with disabilities social rejection is a real visceral danger and I am no exception in that.

It is understandable then that my reaction came across as out-of-proportion and overly pushy to someone who felt she was simply setting some boundaries with an annoying individual who writes overly long texts.

But here’s the thing. After many months of informal exclusion, I was forced to accept an agreement in which we would be sensitive in our communications with each other and I would stay away from powerful roles within the organization in order to minimize contact between me and this person in power. This was the only way i could stay in the group at all.

That may sound like a reasonable compromise, and it did to most of the local XR rebels. But imagine if this had been a black person instead of a person with a disability. Imagine that someone expressed dislike of a black person because of the way they spoke or dressed or some other cultural attribute and started excluding that person. Imagine then—it isn’t hard at all—that the black person got intense and up in that person’s face because they have been excluded and dismissed way too often by white people, and subsequently that the those in power limited the black person to low-level roles as a means to avoid further conflict.

Realistically, most black people—and most people with disabilities—would not get intense. They’d just leave. That is ONE of those reasons that there are so few people from marginalized groups in XR and similar organizations. But it is not at all difficult to imagine this scenario, because like me, some black people stay and fight.

Now, in the scenario with the black person most anti-racist white people are now educated enough to see the problem and to call this exclusion. We aren’t perfect yet and i’m sure this does happen in Extinction Rebellion to black people. But very few abled people are informed enough to see the same situation clearly when the issue is disability. For whatever reason, that’s just the dynamic.

The end result is that, if I want to continue to be part of Extinction Rebellion, I have to constantly bump up against the antagonistic walls set for me, where I am not allowed to take on national roles in the group. And I have to constantly see the XR messages urging us to put people from marginalized groups in positions of power and to feel their hypocrisy.

There are a very few people of color in our local group as well and none of them have significant roles. I don’t know them well enough to discuss the reasons why personally. But the fact is that our group has the option of putting people with disabilities or people of color in visible and/or powerful roles and it doesn’t. In fact, it has barred a person with a disability from national roles, based on symptoms of the disability and post-traumatic responses to social exclusion.

We’ve got a problem.

And I—like many other rebels from marginalized groups—now have to decide day by day if I stay and fight for the soul of this movement I believe holds our best chance for the future or if I let it go and take care of myself.

Courage from wherever you stand

If there is one thing I wish I could give my readers these days it is the feeling that the climate crisis is like a war.

For some it is easy to see it as a war of us against them—us, the ordinary people who mostly want to do something about it, against them, the greedy one-percenters who run most of the industry and make most of the political decisions. But it isn’t at its core an us-versus-them war.

It’s an us-versus-ignorance war. Slowly the ignorance is falling away and we will focus more and more on fighting to mitigate the collapse of our ecological life-support system. But still it will be an us-versus-ignorance war. It will just be against the effects created by the ignorance of the past.

Even the wealthy have to eat and even if they may have bunkers, there is no possible future in which climate collapse goes forward unchecked and they don’t seriously regret not paying attention earlier. It is still primarily about ignorance. “Ignor-ance” has its roots in willfully ignoring and denying reality. That is what we are up against—the denial ignorance of the wealthy, the misled ignorance of the poor and the despairing and apathetic ignorance of everyone in between.

Image by Arie Farnam

Image by Arie Farnam

Plenty of people are saying that we need to respond to the climate crisis the way we responded to World War Two. It’s true on so many levels. The climate emergency is already claiming hundreds of thousands of lives and it will soon claim millions and then billions, if we do nothing. The scale is at least as massive as the second world war was and it will reach into every person’s life just as that war did. It will require many personal sacrifices, political focus, economic manipulation and social solidarity, just as that war did.

It already requires a great deal of courage.

Of course, there is the courage of people protesting and putting their bodies in the way of fossil fuel extraction, processing and transport. There are the people chained or glued to government or corporate doorways. There are those sitting down in front of police wielding chemical weapons and people standing in the middle of intersections, demanding that other humans do indeed stop business as usual, stop driving, pay attention and treat science as a real-world matter.

Some people look at these protesters, often dressed up or in a excited, bonded group, and assume it must be fun or they must be in it for the adventure. And there may be some who are in it for adventure the first time around. But a lot of people are doing it again and again. They are willing to be roughed up by irritable police on extra shifts and willing to spend long, cold nights in improvised cells. They know what they are in for.

That is courage. I’ve seen a lot of people grasping courage these days, more than I think I’ve ever seen in my lifetime.

There’s the courage of a young mother, so scared she’s trembling, who he accepts the role of press spokesperson for an action anyway, because all the people without babies are either on the blockade line or doing risky conflict deescalation work. There is no one else who can address the TV cameras. So she does it, even though she’s never been an activist before.

There’s the fourteen-year-old girl who signed up to learn to be a field medic with her parents’ consent, willing to wade into fields of tear gas and distribute clothes soaked in antacid to people gasping for breath. There’s the courage of those worried parents who know this is something she has to do.

There’s the woman who I watched stumble through a workshop presentation for new climate action volunteers in which two young men decided to pick apart her every statement. Walking to the subway together after I helped her lock up the office in the evening, she confessed that it wasn’t just her first workshop presentation but the first time she had ever spoken in front of a group of people in her life.

I have not chained myself to anything strategic or refused to move under police orders. Not yet at least. Some of my rebel friends are willing to forgive me this reticence because I have a disability and a disabled child. “Well, that’s why Arie isn’t out there getting arrested.” I’m the one teaching the medics and the deescalation teams. I’m the one holding the hands of new volunteers, giving a dozen pep talks a day.

But I’ve had to poke deep into my own reserves of courage. When I first signed up my family and close friends were all warning me to be careful, even asking me not to join Extinction Rebellion because whenever I have joined community organizations before it has always ended in pain, social rejection and deep depression. The fact is that, especially where I live in the Czech Republic, a disabled. middle aged woman with strange-looking eyes and awkward social communication is not well accepted. My family didn’t want me to go through all that again.

When I go into groups, I can’t make eye contact or play out the little exchanges of non-verbal communication. Mostly people don’t realize this or understand what it means. They just get the feeling that I’m aloof or uncool, or most oddly, calculating and competitive. The inevitable result has been a lot of social isolation. I join groups enthusiastically, get a lot of confused reactions and soon find myself mysteriously dropped off the invitation list.

So joining Extinction Rebellion, I was so scared that I lay awake all night shaking after every meeting in the beginning. But I knew I had to go anyway.

I wish I could tell you those fears were entirely unfounded. I will say that Extinction Rebellion tries hard to be open to all—people with disabilities, older people and people with children included. It’s a real topic of discussion and those discussions matter. I’ve never found a group where I did feel this welcome. But I have run into people who reject me out-of-hand, even in the consciously inclusive culture of XR.

Facing fears doesn’t mean facing down only illusion. Much of the fear is real. Those protesters in France really did get viciously attacked by police while sitting calmly and quietly. Some people really did needlessly torment that first-time workshop presenter. And every time I play the role of social greeter at an XR event, I will get some hard looks and some cold shoulders, which cut deep because of the social context of long-term ostracism.

It’s a time for courage. Whatever terrors you have to face, now is the time.

And there is another part of courage we all have to seize together. Not a day goes by when someone doesn’t ask me some version of the question, “Isn’t it too late and hopeless anyway?”

There are a hundred arguments why the key strategies to mitigate climate disaster won’t work. Most solar panels are made in China using minerals mined at great environmental cost and then there’s the methane in the arctic lakes, all the tipping points we may have already crossed, And that’s just the science part. We have only just begun to demand real political and economic change and those systems don’t want to change. We may well not be able to bring our society to change quickly enough. And if we manage it here, will we be able to get China and India to join us? The odds seem awfully long on stopping CO2 emissions in the time frame scientists have said we must, if we want to avoid global calamity .

In 1938, when the allies signed the Munich agreement with Hitler to allow the Nazis to take Czechoslovakia in an attempt to deny the inevitable, people who warned of the encroaching tide of fascism were called “alarmists.” And then when the allied forces did go up against fascism, it looked hopeless. It looked like we had waited too long.

That’s what Hollywood portrayals of World War Two don’t show. They say they’re showing courage, the heroic battles in which good conquers evil in the real world. But the reality is that those French resistance fighters, those nurses in Blitz-torn London, those teenage girls holding the Eastern front in some Russian town, those Romani prisoners rebelling in a concentration camp, those boys on the Normandy beaches, those fighter pilots over the North Sea and those victory gardeners on the other side of the Atlantic waiting for husbands, sons and fathers to come home did not have good odds. We look back at them through the lens of what did happen. They fought and they won, so of course they had the courage to fight.

But it wasn’t an easy choice for many of them. There were times during the war when it looked very bleak. In our struggle now, it looks bleak. It looks like the risks we take and the sacrifices we make may be for nothing.

In that too, we need courage—not because we know we’ll win but because the only way to live well now is to fight this war against ignorance,

Guarding against poison

Commuter trains in the Czech Republic are strange, almost surreal places. They are often packed so tightly that you are touching several other human beings and breathing their breath even if you are all trying not to.

And yet these trains are often utterly silent.

In some places where I've ridden trains, subways or buses--for instance in New York, the US west coast or Western Europe, not to mention the global south--commuter vehicles are noisy, crowded and full of local culture, often featuring someone making impromptu music.

But in the Czech culture, there is a social contract that holds silence and pretend privacy as the highest virtues.

Creative Commons image by Eric Wüstenhagen

Creative Commons image by Eric Wüstenhagen

That was why the man sitting across from me yesterday sounded so loud. He was speaking into his phone, his voice pitched a little low but not nearly low enough. All around us everyone else was painfully silent. And this man's voice was audible throughout the train car.

"I told you, I turned it off... What you think you know is irrelevant. I know I turned it off... Well, listen to me. There are stupid people, as you well know. I am an intelligent person. I turned it off.... If you cannot accept reality, you are just what you are... I told you, I turned it off. I don't care. It's there on the counter. I turned it off. Maybe you turned it on in your sleep. I know what I know."

It wasn't so much his words, going on and, on mile after mile, that had me gagging on rising vomit. It was his sickeningly condescending tone. Superiority and contempt dripped from his every word.

I couldn't help imagining who he might be speaking to. Maybe a child or an elderly, senile parent... but most likely his wife or female partner, given the context.

The more I was forced to listen, the more I didn't give a flying rat's ass who he was talking to, how difficult they might be or what was the truth of his history with the device on the counter.

I couldn't hear the person on the other end of his line, not even a peep, despite sitting just a few feet from him. But shrieking would have been a reasonable response to his tone, in my view.

Am I oversensitive? Possibly.

I have known contempt. I am intimate with it. It is the natural child of delusions of superiority. I would wager that every person born with a significant disability has met contempt as well as its somewhat prettier but no less poisonous little sister, condescension.

Their existence is often hard to prove in a digital world. Reading the words of this man on the train, you may wonder why I was upset. Ninety percent of it was in the tone.

It often is that way. The person who wields contempt or condescension must maintain--at least for themselves--the illusion that they are superior, in-control and beyond reproach.

Last week, someone criticizing me for firmly insisting that my child not play in the water until she had changed out of her clothes and into her swimming suit used that tone on me. Parents of children with neuro-diversity are often judged by those who see the difficulties those children have and assume it\s all about bad parenting. Far too many people jump immediately to feelings of superiority.

A police officer patrolling a climate-crisis protest I was involved in used that tone on me just yesterday because he was convinced that I was holding a white cane as a media stunt and only pretending to be visually impaired. When people leap to conclusions about another, they are often wrong.

Haven't I ever felt contempt myself? Yes, to my regret. There is a fine line between disgust and contempt. Disgust arises when a we encounter something utterly abhorrent.

The man's tone on the train filled me with disgust, but not with contempt. I heard his abusive words and suppressed anger. I knew he wasn't doing well. I felt sorry for the person he was speaking to, but I also was well aware that I am not on a different level from him. I have to remind myself of that, which is why I know I am not "above" such negative thinking.

Contempt is disgust with the added punch of a belief in one's own inherent superiority. I didn't feel contempt that time on the train, but I think I have at times slipped down that slimy slope a little and had to pull myself back through shame and remorse.

The fact is that no one is superior to another in that way. It isn't easy to keep that belief firm in today's world in which so much is horrible. But the knowledge that I might be wrong in my perception, that I don't really know the experiences of others, keeps me back from contempt now.

I swallowed back bile on the train and spoke firmly and calmly to the man across from me. "Sir, I don't care who you're talking to or what they may have done. That tone you are using is inappropriate and abusive. I have to ask you to stop because that tone is poisoning the air for everyone here."

He glared at me for a second as if ready to argue or fight. Silence reigned all around us. The other passengers turned their faces a fraction more away from him. Finally he hung up his phone without any further comment, got up and left.

This is why I don't want to perpetuate contempt, no matter how disgusted, outraged and furious I may be at the injustice, greed and cruelty practiced by some human beings.

Simply put, contempt is poison. It poisons the one spoken to, the one speaking and all who hear or read it. It is the poison that has made social media toxic and broken our public discourse. Open display of contempt is the thing that most sets Donald Trump apart from very bad presidents of the past such as George W. Bush.

Contempt comes from a belief that one is inherently superior to another, who is irredeemable regardless of future actions. So, this is the first thing we must guard against, like the key component to a lethal poison.

It wouldn't even matter if true superiority and inferiority existed in humanity. The poison such assumptions create is too toxic, like hot nuclear waste. It cannot be born.

Superiority and contempt destroy families, communities and nations. "A little innocent superiority complex" is actually the diametric opposite of trust and goodwill.

Let us then set our hearts to a conviction of basic respect for others. This doesn't mean I don't tell that man on the train that his tone is poisonous. It means that I nurture the hope that he might question his assumption of superiority. Many people don't change. But everyone could change.

There was a girl who didn't fall down

There was a scrawny girl with legs and arms too long for the rest of her. And those were crooked, the bones curved wrongly. Her face was almost all toothy grin and huge thick glasses.

When I catch a glimpse of her in an old picture my mind reels. That was me. I know it was but I can hardly relate anymore.

I was beyond gawky and awkward at thirteen. I had terrible posture from being nearly blind and constantly leaning forward to see things. I looked disabled and I was almost entirely socially isolated. Self-esteem wasn’t even a concept. I was in survival mode. Nothing beyond that mattered much.

Creative Commons image by Sheila Kaye Matthews

Creative Commons image by Sheila Kaye Matthews

But then there was that one day when a summer camp counselor from the Blind School took me and a few other kids out to the Columbia River where the state Special Olympics water-skiing team was training. They figured, since they had the equipment out there, they would give us the chance to just try it out.

I can still remember how they made us stand on the grass and hold our hands out in front of us with a stick. We bent our knees while one of the adults gently tugged at the stick in our hands, trying utterly futilely to give blind children an inkling of what it would feel like to water ski.

We could hear the noise the boats made and distant shouting. A few of us could see the very beginning, when a skier sitting in the water rose up and seemed to stand on the surface for a second before disappearing beyond our extremely limited visual range. Our concept of water skiing was very shaky.

“The water will push at your feet.” The instructor put his hand on my feet and then on my knees. “You have to bend your knees and lean back against it.” He put a hand at the small of my back and coaxed me to lean back. All I knew was that if I leaned back that far, I’d fall over.

“You will fall down the first time and probably lots of times,” they told us. “It’s not about staying up. It’s about getting up and trying again.”

Adults who teach blind children love cliches.

I thought about all that water. I could sort-of snow ski, so I knew how skis worked. In theory, I guessed that the skis could push against the water if I was pulled forward by the boat, and somehow I’d ski up out of the water and stand on the surface. And then I’d lean back, like they said. It just wasn’t conceivable.

“Don’t worry,” the gentle lady from the Blind School consoled me, patting my shoulder as we walked toward the river, “If it is too hard or anything, you just let go. You’ll fall right into the water like jumping off the diving board. No big deal.”

I realized when she touched me that I was shivering all over. My whole body was buzzing with a fine unconscious vibration, like the hood of a souped-up car..

I waited behind several other kids. Each one in turn stood in the water near the shore while the instructors put on their water skis and then handed them the stick at the end of the tow line. One instructor near the shore would count down and the boat’s engine would rev and then the tow line leaped forward.

Half of the time, the blind kids just let go of the stick and never even fell down. The other half of the time, the tow rope pulled them a few feet forward and they splashed head-first into the river. I tried to make out the scene but all I could get was a general impression as the instructors pleaded with the three kids in front of me not to let go of the stick the instant it jerked forward. Two of them let go anyway and the third splashed into the river.

Finally, it was my turn. The water was cold and my shivering got so bad that I thought I couldn’t possibly hang on. The instructor put my skis on and held my knocking knees for a second. I comforted myself that even if I couldn’t keep a hold of the stick, at least the first pull would show me what it felt like. They said we could try again, if we wanted.

I leaned back as far as I could and felt the skis. I gripped the stick with all my strength. I was determined that at least I would be one of those to fall in the water, not just lose the stick.

“One. Two. Three.” The boat engine revved.

The stick jerked hard and I almost lost it. My body lurched forward and I was sure I’d be in the water face first, but then the skis moved. I crouched low, the way I did on snow skis on a steep slope and I felt the slope rise under the skis.

The rope pulled hard at my hands. My knees knocked and I almost went down as the skis broke the surface of the water and the line jerked even harder. I heard a faint yell go up from the people on the shore behind me.

And then a miracle happened. The water buzzed away under my skis. I slowly stood out of my painful crouch and leaned back into the feel of support from the tow line.

“You OK?” A hoarse yell came from the boat. The shore was long gone.

I gritted my teeth and nodded hard. I was glad for the ability I knew sighted people had to see my nod without my having to unclench my teeth to yell back. I was so cold from the wind that my knees and elbows were still shaking but I was OK.

I felt the way the water was like springy, unstable ground beneath me. I felt the secure tug of the line. The boat slowly eased on a little more speed and the water felt harder under my feet.

I experimented gently rocking from side to side. I tried to dig in one side of a ski the way you do in the snow and almost fell. I lurched forward and then to one side and the boat engine sputtered and nearly cut out when whoever was watching me saw what I had done. But I regained my balance and kept going.

That first time up actually seemed to take forever. Mostly other than the thrill, all I remember is how incredibly cold I was. Finally when I didn’t think my muscles could take another second and I was shaking so hard that it must have been visible from the boat, the motor slowed and stopped in the river. I sank into the water, which felt as warm as a bath after all that cold wind.

The boat circled around and came in close so that I could take off the skis and climb up onto the back of the boat.

I barely heard what the people on the boat said, except for one thing they kept saying, “Two miles.”

I thought it had felt long but that long? I was a rural kid and I regularly walked two miles to reach a friend’s house. That was a good distance.

They took me back to shore and I got to warm up while I waited for the other kids to try again. I was worried that they wouldn’t give me many other chances because after all, I had really had a good ski, while the other kids had just fallen in the water, but within a couple of hours, I got to try again and then again. A lot of the other kids wouldn’t do it after the first few tries.

A few did get up on the skis but clearly I was different. I had never been athletic before and the whole thing confused me. I wasn’t special. Not in anything but academics at least. I was a good student but hopeless in social or physical realms, a complete social outcast and a stereotypical nerd, other than being female and growing up rural with physical chores that made for a bit of unskilled muscle.

Once a couple of the instructors came over to me while I was getting the life jacket on again for another try. One of them seemed to be showing the other one my legs. I don’t remember the exact words but apparently they theorized that the crooked, curved bones in my legs that made me run in a grotesquely flailing and inefficient manner, might have by chance given me a water-skiing advantage.

I spent not just that day but the entire week on the water and I was allowed to water ski just about as much as I could stomach. I learned to cross wakes and ski through obstacle courses. I got to go as fast as I could handle and face fear. I couldn’t recognize anyone’s face because I couldn’t see and the noise of boats made it so I usually couldn’t hear what anyone said either. I was almost entirely cut off from the human world during that time, but I didn’t really care.

It was all physical—the water, the sunshine, the cold wind, the pull of the line, my aching muscles the slap of impact when I did fall, which I did a lot once I started crossing wakes…

It was more fun than I could ever remember having and the only bad part was contemplating the end of the week and my return home to chores, boring schoolwork and mean kids at school who ostracized me.

But then at the end of the week, several adults came to me and said I could join the Oregon state women’s team and go to the National Special Olympics water-skiing competition in Florida. There was even a picture of me in the local newspaper, goofy grin and huge glasses behind a water ski dramatically posed for the camera, but the clipping was lost somewhere in the past thirty years.

I went too. It wasn’t as much fun as that week on the Columbia. There was a lot of waiting around and when I finally got to compete, the place and the skis and everything was unfamiliar and I didn’t do very well.

But that didn’t really matter.

I told myself none of it really mattered. it was “only” the Special Olympics after all. I didn’t even tell my friends at home much beyond that I got to go water-skiing. No one made a big deal about it. I got third place in some category or other but I didn’t feel like I’d won.

That wasn’t the point. The point was that engagement with the physical, that sense of being one with my body, of being physically strong and worthy.

Today when I hear about the Special Olympics facing funding threats or I hear people use the Special Olympics as a slur or a joke, I can’t help but think on that. I did other Special Olympics things as a kid. I ran track and field in the local competitions. I didn’t really like it and I didn’t win with my flailing legs, but it was good exercise. I did know how to push myself. That was good too.

But I know those two weeks of water-skiing—one on the Columbia and one in Florida—changed my entire self-concept as a teenager. I went from just surviving and fighting everyone and everything because I was rejected and wrong and hurt to nursing a ferocious desire to “show them all.”

I’m not saying the second impulse was even healthy. I was driven for the next twelve years to succeed academically and professionally. I competed for and got a scholarship to study abroad when I was sixteen. I competed for and got scholarships to go to a prestigious private college. I competed for and got a coveted place as an international stringer for a national newspaper and became a journalist in the Balkans and Eastern Europe. I traveled through more than 30 countries.

Did it start with that miraculous moment when I didn’t fall down, despite all the predictions? Time-wise, yes. It coincided with the sea change.

Psychologically it is hard to say. But I’ll stand by the Special Olympics. I’ll do whatever I can to make sure it goes on, because I think it did play a role and does play a role with a lot of kids who are beaten down and at the bottom of despair. It’s one way to rise out of that.