Dancing without flight - Short story

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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.

Still dressed up: Greeting unknown humans with stubborn positivity

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I was waiting my turn at the check-in desk at the chiropractor’s office on Samhain (that’s the day after Halloween for non-Pagans). I can’t see much with my funky eyes, so I don’t know precisely how it happened—whether the receptionist glanced at me or what—but the person ahead of me turned around, looked me up and down in an exaggerated way that even I could see, did a dramatic physical double-take and declared in a negative tone, “Watch out! She’s still dressed up!”

I was a bit taken aback and befuddled, so all I managed was to mumble, “I’m not actually dressed up.” The lady turned back around and ignored me, finished her business and left.

Image via Pixabay - Image of a woman’s face covered with colorful paint

When I shared this experience, a lot of my friends expressed shock and outrage or said I should have made a witty comeback. I wish I was that quick on my feet and I could think of several afterwards, ranging from, “Well, at least my costume doesn’t impede my ability to be polite!” to “I’m so glad you noticed!” with a little faux preening. But unfortunately, past social trauma makes me go into deer-in-the-headlights freeze mode when things like this happen out of the blue.

So, my witty comebacks are usually all for naught. And the truth is I wasn’t that upset about the comment itself. Afterwards, I could certainly see the argument of several friends that it is never okay to randomly comment on a stranger’s appearance. That really is social skills 101.

But I can’t help pondering more deeply. I was clean and had street clothes on. I was wearing a head scarf of no particular cultural background. I wear them as a personal reminder of oaths to my gods, so it is a bit of a religious head covering, but frankly, I also wear it because I have bald spots that often show, despite having long hair.

I was also wearing a colorful tunic and a long black sweater over it that could have been mistaken for a very vague imitation of something out of Harry Potter. And of course, I was carrying a white cane.

So, more than a witty response, I wish I’d asked, “What part makes you think it’s a costume? Really. Just curious.”

Was it the colorful headscarf and shirt which only sort of matched because they used the same color combination but in different patterns? Was it the black leggings and sweater? Or was it the white cane?

I did see a meme about a pilot dressing up as a blind person, using a white cane as he boarded the plane and entered the cockpit in front of passengers. I’ve got to say that I hope that wasn’t why she thought I was in costume, because that’s not okay. If dressing up as Pocahontas isn’t okay, then dressing up as a blind person isn’t either. The same type of disrespect is involved.

If it was either of the other two or a combination… Well, I guess that would imply a bit of small-town thinking on the part of my fellow sufferer of back pain. But I expect my getup would not have generated much comment in a larger city, even if manners didn’t censor most people’s impulses. I have certainly dressed in more flamboyant things and rarely get a comment.

Maybe that’s just because my outfits are considered so outlandish that it’s awkward to mention it. And really, since I’m not applying for a job, that’s okay. I try to tone it down a little when I go to advocate for my child’s special education needs, but otherwise those who dislike my free-spirited, definitely-not-up-to-date fashion sense too intensely are welcome to weed themselves out of my overly chaotic life.

The truth is I’m just tired of trying to please people all the time, especially when it appears to have no effect on anything. I know that I have some disadvantages in social stuff by being visually impaired. I can’t make eye contact. I can’t recognize people. I can’t smile and wave at acquaintances.

That all creates a lot of awkwardness, some hard feelings and misunderstandings at times and so forth. But I make sure to tell people this. And I smile a lot. I devote a lot of time and attention to making sure sighted people will feel comfortable with my expression and hedging my bets on whether or not I know them, as well as when and how to ask them to let me know who they are in a sensitive way.

An unflattering selfie of me to show what I was really wearing at the chiropractor’s office

But mostly I just try to be friendly and positive. With all the bureaucratic, medical and special education stuff my kids and I have been dealing with I have to see and interact with a wide variety of people every day, many of them strangers and many of them acquaintances who have seen me a few times. I smile and do small talk when appropriate. I I give complements whenever I can find a way that isn’t awkward. I may be frustrated with their whole bureaucracy, but I still smile and compliment the person in front of me.

And yet, the responses I get from people are so often negative. There are a few exceptions, but they aren’t friends. They’re just people who are polite and friendly back at me. And they are definitely a small minority, one in ten or so.

Some days I do worry that this is all because of me. Is the negativity of my circumstances so intense, that no matter how much positivity I put out, it hangs on me like a stench? Are my clothing or grooming choices truly just beyond the pale? Are my eyes and lack of eye contact so disconcerting that most people can’t get past it, despite gentle reminders that I’m not doing it on purpose?

All that wondering leads to a lot of anxiety and self-doubt. But I remind myself daily that it also leads to naval gazing and self-focus. The truth is that people are mostly wrapped up in their own troubles and likely not paying that much attention to me (or anyone else).

But that leads me to the final option for why I run into so much negativity on a daily basis. If it isn’t me but I’m still encountering negativity constantly, then it’s just out there and everyone is suffering from it. That may be a psychologically healthier way to look at it, but it’s also way more disturbing.

With the crises of climate change, war and so much trouble in the world, I could wish the negativity was due to something simple like my fashion choices. If it is true that the world is just full of so much resentment and isolation that everyone is experiencing what I’m experiencing from others, we’re in bigger trouble than I ever imagined as a young activist for positive changes in the world.

How do we stand a chance at ending wars or reversing environmental destruction, if friends rarely meet in person, people don’t form new friendships beyond school, people look at strangers with judgement and resentment first and a circle of trusted friends or family is a rare luxury that few experience?

I fear that this is the real reason for the social isolation I experience and for much of the big troubles of our world. As much as I was frustrated with older people who said things like this when I was a young activist, because I wanted big changes first. I see now that we will never manage any lasting or worthwhile big changes until people make changes in their spirit and how the relate in community.

I can tell you from the experience of someone who could never see other people’s faces so the world is eternally full of probable strangers, that it is hard to keep smiling kindly, keep greeting people with generosity, keep open the belief that the next vague unknown form you meet may be a dear friend. It’s hard but necessary. When sighted people—when enough of everyone—starts greeting the world the way well-adjusted blind people greet the world, maybe, just maybe, we’ll have a chance of solving some big problems.

Open letter to Trever Noah about the word "spaz."

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Dear Trevor Noah,

I’m sure I’m probably not alone in telling you that your show is a balm for me, a respite from a despairing world and a healing draught of laughter in the face of things that hurt too much.

I’ve got two kids who I adopted from traumatizing orphanages in the Czech Republic. They were kids the authorities told me “no one would adopt” because they are from a despised, non-white ethnic group—the Roma.

We spent the first ten years of their lives living there in the Czech Republic. 2008, the year before my daughter was born, was the first year when Romani children were allowed to go to standard Czech schools. By the time she went to first grade, I didn’t need a lawyer or a police escort to get her into school, but it was nip and tuck there for a while.

My son’s preschool attempted to expel him when he developed a minor allergic skin rash, because he was non-white and their assumption was that he was diseased and contagious. They would have succeeded too, if his pediatrician hadn’t been progressive and feisty. That was in 2015.

I tell you this, because you need to know that I’ve seen a few things. I’m a white American, but I’m not exactly your typical white American. I’ve had “the talk” with my kids, ages eleven and thirteen, about police and brown people. I learned how to do it by reading Black authors, listening to you and talking to my Nigerian friend in Prague, who was distressed when I said we were moving back to the US to escape the rampant racism and the beatings my son was enduring at school.

“You’re going THERE to escape racism?”

I grew up in the US—in a particularly backward and monotone part of it, in fact. I have few illusions about things here. I told her that she was absolutely right. That we probably wouldn’t be going, if my children were Black. But they aren’t Black. They’re Romani, and the realities on the ground are such, that it’s safer here for them than there. She agreed that that was the best a parent could do.

Image of a dark-haired man drawing a picture of a female figurine with his toes.

Before I had kids, I lived and travelled in more than 35 countries, including several months in Zimbabwe near your homeland. I spent ten years working as a journalist, primarily exposing the quiet but lethal racism against Roma in Central and Eastern Europe. That’s my history, which I think may give you some perspective on what I need to say to you.

I am also pretty anti-celebrity. I’ve never really cared about a celebrity who was alive before, since the last one I liked at all was Bob Marley and I was five when he died. I know famous people have the same feelings and foibles the rest of us do. And so, it isn’t so much that you fell as a giant for me when you dismissed the concerns of people with disabilities. It is that I felt like I was betrayed by a friend.

That’s silly, I know. You don’t know me, but I don’t watch any TV, except for you. I listen to audio books or listen to international news. I watch Netflix on a tablet occasionally. But TV? Nope, except you when I exercise every morning, there’s nothing on there I care to see. And as I said, your ability to laugh in the face of the worst depredations of our world is really and truly medicine.

And I know that it is always only a matter of time before anyone, even the best friend, has a different opinion. That’s not the point. I have disagreed with you several times. No sweat. I don’t even entirely remember what the fine points were. This is different, because it strikes at the core of who you are. It is something that betrays all the work of bridging divides and empowering the disempowered and fostering empathy that you’ve done.

Yup, it’s about Lizzo. Now, I don’t know LIzzo very well. My daughter listens to her. I think I recall her listening to a song with the word “spaz” in it at one point. I noticed and mentioned it to her, explained that it’s a derogatory word that we don’t use in our house, because it is used as an insult against people with disabilities. We had the whole discussion about how it means something quite different in this music. I didn’t know for sure but guessed, even at that point, that its meaning might be significantly different in African American culture than it is for most of the country.

I wasn’t that mad. I didn’t forbid my daughter to listen to that music. It’s far from the only “bad word” I don’t want my kids repeating at school that they encounter in popular music. And no, just talking to my daughter about it, didn’t fix it. My daughter is developmentally disabled, essentially due to the horrific conditions Romani children endure in the Czech Republic. She has talents but she was injured by that system and part of that injury is neurological damage that interferes with her ability to understand abstract concepts, remember conversations or connect cause and effect.

So, I talk about these things with her, but she may well repeat the word “spaz” anyway. She’ll certainly hear it used as an insult against disabled children at school, maybe even against herself, though she works very hard to blend in and pass for average.

And that’s the thing, Trevor. I’m not mad at Lizzo. What she did was something that happens. Yes, I understand the argument that she was a bit dismissive about apologizing and changing the song with “spaz” in the lyrics, but as you said, she changed it. That is such a big step in the right direction, it’s worth recognizing.

People with disabilities have largely been left out of the “woke” wave to shield under-privileged groups from microaggressions. So many people would have completely ignored criticism over “spaz” or any other word insulting people with disabilities. You sound like you would have. Lizzo didn’t ignore us, and I’m not too picky beyond that.

If I was someone close enough to her to have a conversation, I might have said, “Please, stop on that a moment. Take a moment to empathize. It isn’t just about avoiding being publicly criticized. It really does hurt people, just like some words would hurt you.” But that’’s it. The basic thing was, she did what was needed. She apologized and changed the song.

Here are two other bits about my background, Trevor. I am a linguist by education, so when I say I’m looking at this not just from experience but also from a language development standpoint, there’s that. I am also blind—that is legally blind. I see about 5 percent of what you do. It’s not noting but it’s pretty minimal. I’ve been that way since I was born. Yup, I’m the same person who worked as an international journalist and hung out in Mugabe’s Zimbabwe as a lone white girl. I was also blind while I did that.

Here are some facts, you need to know about the word “spaz.”

  1. I was called “spaz” as an insult every day for over a decade as a child, in the United States. It isn’t only a derogatory term in the UK and Australia, as you insisted repeatedly on television. It was and still is used as a vulgar insult in this country. You claimed it isn’t and was never used that way in the US. That was factually wrong and I hope you’ll retract it publicly.

  2. I have noticed the linguistic migration of the word “spaz'“ over the past couple of decades. As I’m sure you’ve read, it started as “spastic,” relating to a type of muscle convulsion or cramp suffered by people with some disabilities, but it has been used to insult all people with disabilities, including blind people.

  3. When Donald Trump made that motion with his arm at the reporter who was disabled, that was the motion that usually accompanies the word “spaz.” That gesture also refers to a “spastic” muscle contraction. People with spastic disabilities sometimes move their arms that way involuntarily. Donald Trump is obviously in the United States—not the UK or Australia. And that was not very long ago. Donald, as you’ve pointed out, doesn’t have a great memory and wouldn’t have remembered if this word was only used as an insult decades earlier or in another country. The fact that he used it is pretty good proof that it is a conventional American insult.

  4. About fifteen years ago, I first heard people start to refer to “spaz” as just meaning “crazy” and overly emotional. It had migrated from just disabilities, to mental illness, and like the word “crazy” to behavior that is considered a bit too much. It then migrated further in some communities to mean something less negative as acceptance of “wild” behavior became more widespread.

  5. But it is still used as an insult, NOT just in other countries. Here and now. And despite having a migrated and coopted meaning, I am sure you are aware that many other insulting epithets have undergone similar linguistic migration and we don’t excuse them. It is hard to imagine that with your American staff you weren't;t told the truth. There’s a word for knowingly obfuscating the truth and insisting that our lived experience is not real—gaslighting.

  6. As an example, please try asking Siri (or Google) the definition of the word “Jip.” I believe you’re well-educated enough to know the connotations of that word and would never use it. But Siri says the origins of that word are “unknown.” While even Siri—and certainly a dictionary—would have told Lizzo the connotations of “spaz” had she checked, an uneducated person could not be blamed too much for using the word “Jip,” since looking it up isn’t very helpful. Yet that word is abhorrent and rightly shunned in woke circles. It is a racial epithet aimed directly at my children. But it’s used here in rural Oregon. I used it as a kid, until I learned better. Gip = Gyp = Gypsy = stereotypes about Roma being thieves. Words migrate linguistically, but that does not mean we give them a pass when they are still currently used as insults and derogatory epithets.

Here are some things, I am betting are true about you, Trevor:

  1. I cannot imagine that under any other circumstances, you would deem it acceptable to use a word that is still used as an insult against a vulnerable group, if that group was a race, ethnic group, culture or LGBT+ group.

  2. I feel very sure you have been told by people with disabilities whether in online comments or hopefully in person, that “spaz” is still used as an insult, including in the US. I wonder if you were told that before you went on the air dismissing us as people with valid concerns or only after.

  3. I feel pretty confident that I’ve heard you say that it should be up to the given vulnerable group to say when a derogatory term used against them is “fair game” again. But you aren’t giving people with disabilities that agency.

  4. You decided to state on your show and at great length with repetition, that Lizzo never did anything wrong. You criticized and condemned those members of the disability community who asked for an apology and a change to Lizzo’s song. That using the word “spaz” was legitimate in her circumstances because you believe “spaz” is only derogatory in the UK and Australia.

  5. You have a diverse crew. I guarantee some of your staff know very well that that your statement is blatantly untrue. Either they told you that and you ignored them, or they are so afraid of crossing you, that you have got much worse problems than marginalizing people with disabilities.

Trevor, here’s the thing. Lizzo goofed. But it was understandable. We don’t check every word we use for its connotations in the next neighborhood over. It’s possible that in her subculture, “spaz” really hasn’t been used as an insult in her generation. She was told, and she fixed it.

Some people apparently weren’t happy with her quick and unreflective turnaround, feeling that she was only doing it to avoid criticism. That’s what I saw you get upset about. I’ve noticed that you often seem to feel protective toward the African American community. Nobody’s perfect and every time the Black community in the US makes a mistake, they get just as little leeway as a Black teenage male committing the usual sins that white teenagers regularly get away with. I get it.

But you went a step further and a step too far. You insisted at length that the facts are not the facts. You gaslighted us, telling us that what we know is reality isn’t reality. And you did it because the group you were dismissing is the one group you have never included in your work of bridging divides. I wonder if it is only that you have little experience with people with disabilities.

I have always loved your work because of all the good things in it. I have vaguely noticed that you never include anything about people with disabilities, but I didn’t realize, until now that this is a real blind spot for you. (No, that’s not a problematic term for me. It isn’t used as an derogatory term against blind people.)

Frankly, it isn’t just you. The woke movement is often dismissive of one particular group they should naturally be allied with, and that is people with disabilities. Sometimes we’re included as an afterthought but often we’re left out entirely, as we’ve been left out of your work in bridging divides and making healing out of humor.

Maybe for you that’s partly because people shy away from making fun of anything to do with disabilities. I guarantee I could introduce you to some people who can get you rolling on the ground laughing about disability issues. We are sometimes a bit too much, but I’m sure some of our self-styled “gimp humor” could be made accessible to the rest of the world.

Trevor, you said people often get mad at a celebrity who does something that hurts them and that’s it. They’re done. That’s cancel culture. That’s not my way. I mean, maybe if I heard someone I respected and admired had bragged about grabbing women by the pussy. I guess, I’d probably actually boycott them immediately. But this isn’t like that.

I notoriously can’t hold a grudge. But I haven’t been able to watch your show for the past month. I thought I’d just get over it, but it hurts. When I see you going on without any concern for the hurt this caused and when I saw that it is virtually impossible to send you a letter you will actually get, I can’t listen to your voice without hearing that jeering, derogatory insult against me and my kids.

But I don’t want to give up on you. You’re one of the best we have and I think you can see past this prejudice and accept people with disabilities as part of the communities. you fight for. I’m hoping that enough people will tell you that your dismissal and gaslighting of us hurt and that you’ll listen. Because while I know you’re human, so you can have prejudices and blind spots like the rest of us, I think you—like me—have seen a lot in your life. And that kind of experience gives us the ability to stretch and grow past those prejudices.

So, I still hope that some day I’ll see you retract the untruths about the word “spaz” and affirm that people with disabilities are valid, that insults against us are not okay, that musicians can and should be aware of that in their language, and that Lizzo did the right thing after being justifiably criticized.

But because I do believe in your talent for healing divides, I also hope against hope that you’ll be one of the first to break through the lockout of people with disabilities from the woke movement. I think you’ve got it in you, and when you can laugh at the social systems that cause the vast majority of difficulty that people with disabilities face (the actual physical or neurological problems are minor by comparison), you’ll discover a whole new area of healing humor.

Your voice is strong right now, very strong across this country and especially in progressive communities. I believe that if you are introspective and real and honest enough to look back at that thing with LIzzo and admit you were wrong and that your words hurt people, it would matter a great deal. It could be the moment that turns the tide and makes the woke movement fully inclusive.

Undercover in the red zone

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It is so hot that the only time to walk or exercise is very early in the morning, and in fact, the garage where I keep my elliptical is still overheated even then. So, the other day I opted for a walk around the neighborhood of grid streets. And within a few blocks, I felt like an undercover operative in a strange dystopian country.

The area where I live in Northeastern Oregon is in a kind of limbo when it comes to politics. The local area is solidly in the red. Seventy-five percent voted for Trump the first time, and I think that even slightly increased the second time around.

And yet it’s Oregon. So, it’s easy to forget. We get all the bennies of living in a blue state—legal marijuana, extra health care, housing assistance for homeless families, trans-inclusive norms for public employees, etc. As a result, there is an increasingly vocal faction among the majority conservatives who want to break away from Oregon and join Idaho.

Creative Commons image by Juli of Flickr.com

And even living in a red county, the people I hang out with are mostly fairly moderate. The local farmer’s market required masks, even outdoors, all last year, and literary events put on by the local state university are brashly woke. But walking around a low-income neighborhood feels like going to another country, except it is one with A LOT of American flags.

There are also a lot of suped-up trucks with unreasonably tall tires, rusty vans and wrecks without wheels of any height outside many houses. By 6:30 am there were two different houses on two different blocks broadcasting far right talk radio from big speakers, so that the entire street was literally forced to listen.

“So, we are supposed to believe… supposed to believe… that these rapists and murders crossing the border… rapists and murders… they’re really apparently just innocent people who accidentally got lost on the way to the border checkpoint. That’s what we’re supposed to believe. The libtards are chuckling into their cigars, expecting we’ll just swallow that.” One of them blares with an odd, repetitive cadence over the sleepy sun-drenched eves and gardens, vaguely reminiscent of a fired up preacher.

The other was more on topic for a preacher and no less hateful. “If they want to, if a woman wants to, and I’m telling you I have good reason to know this. If they want they can keep from getting pregnant. But they don’t want that, do they? They want these abortions, because they’re being paid, paid to get pregnant, by those… those… I can’t call them humans… that wouldn’t really be correct… those women are paid by them for the bodies…”

That one makes me quicken my steps. I shudder. The hate for women dripping from the second voice, even more strident than the first, makes me grateful for my mostly quiet meth-using nearer neighbors. But my route brings me back in range of the first loudspeaker.

“We will defend our borders! That’s a fact! Those who say we shouldn’t. Well, you know what they are! Do I need to say the words? I don’t think so. But you know it. You know our second amendment rights are the only thing holding back the caravans and keeping a rein on those who hate our country from within…”

I don’t know what stations or podcasts these come from, but I grew up here and I do know about rural “conservatives.” I can even hold down a conversation and get along fairly well with most of them—by selectively not hearing certain things. But those snippets of talk radio were so far beyond what I grew up with, I know they would have been unintelligible to me a few months ago.

But I’ve been undercover, so I get most of the references.

You see, a year ago, when I first came back to the US from living in the Czech Republic for more than half my life, I got a new phone number from Verizon. And I had the misfortune to get a number that had recently been abandoned by someone else, someone who was not a particularly good citizen. For the first few months, I had debt collectors and school offices calling me, alleging that I owed money and was being investigated for neglect. After some hemming and hawing I managed to get them to accept that I am not who they think I am.

My mysterious alter-ego may have lived in Oregon once, which would be how she got an Oregon area code. But she moved to Arizona. And there, she commenced to run up debts and flake on doctor’s appointments—from what I’ve gathered. She also didn’t talk to some of her in-laws for at least a year, since they contracted me recently and were astounded that this was no longer her phone number.

Worse than that, she had signed up for a bunch political mass texts—all Republican. As soon as the election season started to heat up in Arizona, I started getting texts—first one a day, then two, then several every day. From groups claiming to support candidates for state or US senate seats or for governor and from supposed public opinion pollsters.

I got calls too, mainly from those wanting to ask questions about things like, “What would make you angrier, teachers mentioning same sex relationships in school or public officials memorializing what they say is racial injustice in our country’s past?”

At first, I just deleted and blocked the texts. But they were undeterred. It seems that even when communicating with those who signed up for their propaganda, Republican campaigns know it is better to regularly switch numbers to make sure they can keep hammering, in case someone decides they don’t want their messages anymore.

Finally, I started reading some of them—in a vain attempt to figure out how to unsubscribe and slow the flood.

Kari Lake, who secured the Republican nomination for Arizona governor on Aug 2, promised to “keep human sexuality out of our schools” and repeated claims that Trump won the 2020 election.

Abe Hamadeh’s campaign sent me a picture of him grinning while standing slightly behind and below Donald Trump. He promised that he would “secure the border and the elections” as attorney general of Arizona before winning the primary by a wide margin.

Someone named Mary, who claimed to be a Republican volunteer, sent me messages about Rep. Joel John and how much the NRA loves him. He lost the Republican primary Aug. 2. The NRA’s endorsement apparently wasn’t enough.

The thing that struck me about the texts wasn’t that they were for Republicans or had conservative politics. By and large, the messages looked like they were coming out of late night comedy mocking caricatures of uneducated Republicans. They all claim to be the most “loyal to our President Trump.” All mentioned something about the border wall and some explicitly stated that they want to “keep foreigners out of our state.” Several mentioned putting women “back in the kitchen to improve family life.”

A year ago, if you had told me that Republicans really consciously hold these kinds of racist, sexist and downright fascist views, I would have said you were exaggerating and that while many rural Republicans are taken in by confusing messages, they really are basically kind people who have just had little experience beyond their small towns.

At the same time, I wouldn’t have been able to effectively track what those two talk radio shows were on about. But after months of being subjected to real-live, paid-for and premeditated Republican propaganda, I am unwillingly well-versed.

As the Republican primary results for Arizona came in on Aug. 2, the last text was particularly chilling. “Our 2nd Amendment rights keep radical politicians in check. That's why we are proud to endorse Paul Gosar for US Congress!” Just in case someone didn’t catch the connotations of that, the text elaborated below. It’s “the radical Left in Congress” who “2nd Amendment rights” keep “in check.”

This official Republican party congratulation text for Paul Gosar essentially hints that the guns of the far right are the only thing holding back progressive members of Congress. And this was right smack in the middle of the hearings about the events of Jan 6, 2021. Not only is a coup the way these guys roll politically, but they’ll tell their supporters in the most official and trackable way that it isn’t just acceptable to think about using guns to intimidate members of Congress, it’s the “only thing” that will do that.

Unfortunately, what makes an undercover agent useful is someone to report to and some way to use the information. In my case, while I know that a lot of people underestimate the vicious craziness of the mainstream Republican base at this point, there is apparently nothing to be done. Even political candidates inciting followers to threaten or murder elected members of Congress is no longer something law enforcement cares about, or there’s been so much of it that it’s just the same old thing.

The strident anger of progressives sometimes grates at me when I’m living in my bubble. And I still don’t know that it’s the best approach, but this is the other side and there isn’t much in between or outside the box, these days.

I hope for all of our sake that we can find our way back to working together, because times are getting harder for everyone and it only looks like the times are going to get harder.

Honey, there will come a day...

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Here’s a conversation I had with my son a year ago:

“Honey, there will come a day when a friend wheedles for you to do something really dangerous or illegal. It is so important to learn how to stand up for yourself, to say ‘no’ and set limits.”

You stand there in front of me. Ten years old. Tears running down. It’s dark out. You’ve just come home after curfew and there will be consequences. The boys who live on a street that has streetlights taunted you for saying you had to leave because our street is pitch black at night. They wouldn’t return the nerf guns you lent them. They laughed and ran and shot at you from cover to draw you back into the game.

They aren’t bad boys. These are the nice ones, the polite boys who greet me (a friend’s blind, weird-looking, foreigner mother) and smile shyly when I get off the train, the ones who play with you no matter what color you are.

Creative Commons image by m-louis of Flickr.com

But they’re kids. And they’ll talk you into doing things you know will cost you. And everybody—I mean everybody—will someday have a “friend” who isn’t really a friend, someone who is bad news, who either thinks it’s funny to get you into trouble or wants to do dangerous and illegal things and finds you a convenient fall guy.

They’ll say they’ll be on lookout. They’ll have lots of reasons why you should do it first or take the more dangerous job. The shop assistant already knows them. You’re a really good bike rider. You’re taller than them. There will be “reasons.”

It will sound reasonable. It always does.

But you’re the kind who gets caught. You’re not a sneaky type. Your face is too honest. And you will be thinking about the other guy, trying to protect your friends, while they’re leaving you in the cop’s headlights. And you’re the brown one, the one more likely to get hit hard by the law.

Honey, there will come a day.

Not because you’re bad or not popular enough. You’re a good guy. You’re a good friend. And everybody has had at least one “bad news” friend. I’m not even saying it will happen because you’re too naive. I’ve had them. Everybody has had that kind of moment.

It’s what we do in that moment that matters. It depends on how used to standing up for yourself you are.

A lot of grownups will say—or even yell at you—”Just THINK! Before you do something, THINK!” That’s an easy solution for them. I want to tear my hair and rant at you too sometimes.

But you know how the doctor says those letters “ADHD”? Well, that’s because it is really hard for you to always think first. I know that. You still have to practice. Take a deep breath. Count to three… or ten. Think things through. Yup, you’ll have to.

But sometimes you won’t. Because that’s how brains are and that ADHD makes it particularly hard.

That’s why I say being able to punt the right way is important. That’s why you’ve got to have your core strong. You’ve got to know, deeper than even thinking what you will and won’t do. You’ve got to set your limits and stand up for yourself, even with friends.

This is a problem that kids have and grownups have. It never really goes away. I was about to say that it gets more complicated. But I’m not sure it does. For you, that call to stay out in the streets after dark with friends when you know it will mean you can’t come tomorrow is about as complicated as it ever needs to be.

“Come here. Get a hug. I know it’s hard. Honey, there will come a day when I will have to let go.”

In a year, it’s shocking at how close the end of my ability to protect him has come. I am reminded again and again how hard the judgements and hard edges of society fall on young, brown boys, especially those with neurodiversity.

I remember all the screw ups my brothers and I had and all the second and third chances we got, all the times we fell on soft ground and the generally softer world we lived in which had so much less in the way of addictive substances, bemusing electronics and bewildering complexity.

The chances now are just… well, a gamble, pure and simple. Give it fifteen years and I’ll tell you how the chips fall.

Doctors, haters or churches: Who chooses for you?

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I have always been “pro-choice” if I had to check a box. Not because I like abortion. I hate abortion. I had a “spontaneous abortion,” otherwise known as a miscarriage, that ended my hopes of having biological children and it is still painful fifteen years later. Desperate to have a family, I adopted two children, unwanted infants who might have been aborted but weren’t.

So, when asked, I’ve always said “I’m anti-back-alley-abortion.” I am for women having the choice, not because I think it is always justified and “for the best,” but because the alternative isn’t life. It’s more death. I always figured that's just the realistic, non-ideological way to go at the issue.

Photo of a bicycle at a high desert V fork in a dirt road - Creative Commons image by Gutifoll via Flickr.com

But a recent experience has given me a little different perspective.

It started six months ago, when I received a surprise diagnosis of diabetes, despite being considered a “health nut” by most of my friends. I ate meat about once a week, carefully rationed sweets, halved the sugar in recipes, never drank alcohol, exercised as a matter of course, spurned packaged foods and fast food, and ate lots of veggies and beans.

Because I am already visually impaired and diabetes threatens eyesight in the best of them, I was immediately terrified. I spent about four days wallowing in depression. Then I took the bull by the horns. It’s just how I do things.

First, I cut out all sweets and white flour. The diagnosis did explain a few things. I had been chronically tired for a couple of years and my immune system was tanking. My previous doctor had ignored the problems and treated only immediate illness. I got a blood sugar monitor and swore to “be good.”

But when I ate a bowl of beans or drank a swallow of carrot juice I was overwhelmed with dizziness and ended up needing a nap. Even complex carbohydrates were causing havoc and high blood sugars. I hadn’t been put on heavy medications yet, but the writing was on the wall. So, I dove into a couple of weeks of intensive research.

And as it turns out, I’m not the only one. Yes, there are a lot of people who become diabetic because of poor diet and little exercise. But there are also plenty of physically active vegetarians and vegans who become diabetic. And yet, “low fat, plant based diet” is still the unwavering advice given to all of them.

Studies comparing plant-based, low-fat diets versus low-carbohydrate, moderate-fat diets show that the latter is demonstratively better at lowering blood sugar and averting the problems of diabetes. Some doctors, especially in larger cities and those connected with research institutions, are catching on, and in many places recommendations for diabetics have changed dramatically.

I joined a tough-love online support group that schooled me on a low-carb, whole foods diet for reversing diabetes. Yes, it is technically ketogenic but modified in several respects to better suit diabetics.

And then the magic happened. After a week of rough transitional symptoms, I suddenly felt better than I had in fifteen years. I had energy! I could hike and exercise with ease. Various inflammatory conditions that I had though were just part of me—my severe menstrual cramps, the weird bumps on my arms, etc.—went away for the first time ever. And I lost the unhealthy weight I’d been carrying around.

It seemed like a miracle. Sure, the diet is a bit of a pain in our society, which isn’t set up for it. I have to carry my own food around and pretty much can’t eat out or use most packaged foods. But it isn’t miserable, by any means.

“Focus on flavor!” my support group advised. And I did. I found flavorful, pleasant things to eat that fit the diet. I no longer eat bland, unpleasant things or finish my kids’ leftovers just because I don’t believe in wasting. I eat only what I need and want.

I get a bit hungry before meals and never feel totally stuffed, when staying within the limits of this modified diabetic diet. But I also never have to eat a bowl of beans that doesn’t taste good to me just because I think it’s “healthy.”

I eat no sugar and only moderate amounts of sugar-free sweeteners. As a result, things like raw unsweetened peanut butter taste like a sweet treat to my adapted tastebuds.

But given that diabetes is a serious illness and the diet can cause electrolyte imbalance and even rapid weight loss for some, it is recommended that one proceed under a doctor’s supervision. So, I tried talking to my doctor about it. And hit a brick wall.

She insisted that I was “doing diabetes wrong” and that the proper course for me was to accept somewhat high blood-sugar levels and the slow health decline of “controlled diabetes.” I would never get better or feel good again, but medication would help to prolong my sight and my life somewhat. She prescribed medications with horrible side effects even though my health was dramatically improving. I refused to take them. She became hostile and refused to order the necessary lab tests to keep my protocol safe.

So, I switched to a different doctor, a process that took months. In the meantime, I saw a dietician who told me she couldn't “officially condone” my diet, given the regulations she worked under, “but it’s hard to argue with results.” Now, my long-term blood glucose tests claim I am no longer diabetic. But if I deviate from my diabetic-adapted diet my blood sugar skyrockets again, showing that the testresults only measured my good self-discipline, rather than the actual underlying condition.

The new doctor, however, had clearly talked to the old doctor and came on hostile and rude. The nurse was polite initially and then after going out of the room with the doctor, she was also hostile and thorny when she returned. This doctor also refused to do the needed monitoring tests and declared that I would come to regret not following their advice to return to my mostly vegetarian, low-fat diet, which had led me to diabetes in the first place.

Pizza-baked zucchini that turns out to be a very healthy choice - Creative Commons image by LuckyNessa via Flickr.com

Many rural or general practice doctors are still using the same diabetes treatments advised fifty years ago, and I couldn’t find a doctor in my local area who would even consider the efficacy of the low-carb diet that had given me my health back. Finally, I found a doctor who is open to the more recent research and who will take my insurance… in another state, over some high mountain passes, more than 120 miles away.

That was about when the Supreme Court leak happened, and a light-bulb went on in my brain. So, this is what “making decisions about your own body” means. This must be a bit what it feels like to be told that, “No, even though you might die, you can’t have this particular medical care because we don’t think it’s right.” Maybe it’s also how trans folks feel when trying to get transition care.

I’m this person facing a life-threatening health problem. I find a solution that works. I feel better. With the proper health care, I can conquer this condition. I can live again and there is no particular, studied, documented reason why my choice is bad. And yet, I’m told “no,” again and again, treated with hostility and discourtesy. I am forced to travel across state lines to get health care.

So, I’ve got to give some respect to those who have campaigned on reproductive rights and even on trans rights. Because there’s a part of it I get now that I didn’t get before this moment when something like that came and bit me too.

I have more reason to check that “pro-choice” box now. And I see that it is actually aptly named. It isn’t just about being against back alley abortion. It’s about the whole concept of people having the final say over their bodies and their health. Doctors should advise, yes. But they should also stay up-to-date as their field changes. When an individual is different from others, they must treat the individual, not the statistics.

And in the end, when a person makes a choice for their health and body, after listening to all the advice and considering all the factors, they must be treated with respect and given the care appropriate to that choice, even if the doctor doesn’t entirely understand. We can’t choose for someone else and there is much more under the sun than any of us can know with certainty.

From the other side of a health choice that went against the grain, I’m here to tell you to listen to your body. Follow what works for your body—not what is fashionable or intriguing or trendy or “natural” or feels good in the moment—but what gives your body sustained strength and health. Pay attention to that and find health care providers who do as well.

I just hiked up a mountain and back and felt great while doing it, after years of foot and leg problems, unexplained weight gain, difficulty exercising, chronic fatigue and other symptoms made me think I would never be able to hike again. Anything that makes a body get that much better is a wise choice.

Who we are supposed to hate

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First, let me tell you a story, a real-life adventure in the “Wild East” of the early 2000s.

I was backpacking through Ukraine during a frigid March with American freelance photographer Kirt Vinion on the trail of a rumor about illegal coal mining operations in the Donetsk region. We’d been on the rails and the cold streets for three weeks and my stamina was wearing decidedly thin. A contact of a contact of a contact finally led us to the apartment of a woman named Svetlana in a mid-sized, out-of-work coal-mining town.

She’d agreed to put us up for the night and get us connected to local people who knew about the mafia operations in the old mine tunnels. Kirt offered her money for her trouble, but that wasn’t what she wanted. Svetlana was educated and she knew a couple of foreign journalists, thread-bare as we might be, could be important in the struggle for a better future for her town and region.

The heat had been off for months and Svetlana kept all four burners of her range stove going, trying—mostly futilely—to heat her apartment. She said the future would be bleak unless the mafia could be brought under control. She took us to a local pub in search of food, and several rough-looking men surrounded us and loudly stated that they were going to kill us. Svetlana played cool, said her “Papa wouldn’t like that” and they melted away.

Creative Commons image by John Karwoski

“Everyone has connections,” she shrugged. “It’s how we survive.”

The next day a local writer friend of hers smuggled us out of town, lying down in the back of his hatchback. The “Papa” trick hadn’t quite worked well enough, they said. Vasya, the writer, dropped us off at the edge of a leafless woodlot as snow began to fall again and told us to walk down the track to the right for two kilometers, then turn left at the fork and we’d find “it.” He sped away before I could get clear on what “it” was.

There was no cell signal out in Eastern Ukraine in those days. This was all low tech, so we shouldered our packs and hiked. I could tell Kirt was uncomfortable and doubting my language interpretation skills. I was, however, much happier out in trees, away from too many people. Snow or no snow, this I could handle.

Sure enough, after some anxiety and floundering around, we came to a tiny, dilapidated village bordered by towering slag heaps. We stumbled out of the trees and a wirery old man came out of the nearest house, grinning from ear to ear with delight.

“Valeriy,” he told us his name was. He gave us hugs and double-cheeked Russian kisses and hustled us into the warmth of his “kitchen,” which was an open-sided shed in his garden enclosure. There he had a fire going and he started to fry up a small pile of potatoes. My hunger was almost overpowering. We hadn’t eaten a decent meal in a week and we hadn’t had anything to eat all day—with our escape from death threats and all.

When I thought I couldn’t stand it a second longer, Valeriy divided up the fried potatoes, sprinkled on salt and we fell to ravenously. “Yes,” we’d found the right place, he confirmed, bobbing his head up and down. “Yes,” someone had told him to expect us.

“Svetlana?”

Well, he didn’t know her exactly, but through someone else, a grape vine, one way or another, he knew about us and wanted to help.

“Tonight, you sleep!” Valeriy boomed heartily. “Tomorrow you will see the mines.”

“Will the mafia be upset that we’re here?”

“No, no, silly worries,” he guffawed. “Don’t worry. You’re safe here.”

The next day, true to his word, Valeriy introduced us to his relative-of-some-sort Vasily, who led us into the woods and introduced us to two different teams of illegal mine workers. One group was crawling in and out of a ventilation shaft in the a wooded draw half a mile outside the village.

While Kirt got outfitted to accompany the miners underground, I sat talking to the young women who made up a good part of the crew. They were in their late teens, little more than girls, but their faces were hard and black with coal dust. They showed me the hundred-pound sacks of coal they had drug up out of the shaft by hand without equipment beyond old helmets and headlamps.

“Isn’t it dangerous?”

“Of course it is, but there is no food here without money... The state controls all the farmland. If we don’t work, we don’t eat and neither do our children.”

Where were the older people? I asked. Mostly anyone over thirty was so sick with lung diseases from breathing the coal dust that they could no longer work. The crews got younger and younger every year, the girls told me.

The second shaft we visited went straight down like a well. There was a twelve-year-old working there, squirming into places the adults were too large to reach. “Yes,” they worried. The women in that group showed me the shrine for a group of colleagues who had died in a cave-in a month earlier. But here the same desperate explanation was repeated, and their gaunt faces and the fact that we could barely find food to buy despite our hard currency made it very believable.

We returned to Valeriy’s house exhausted that night but excited to have finally found what we had been looking for all those weeks. Valeriy had more planned for us the next day. He talked animatedly about how good this land had once been to his family. Showing me a portrait of Joseph Stalin, he kept in a place of honor in his living room, he explained that his parents had been resettled here from some place in northern Russia. They’d been hungry all the time and here the land was open.

“No one living on it,” he smiled, thinking back to his childhood. “The soil grew food as easily as weeds, and there was coal and good jobs for everyone.”

I was practiced at not showing my shock. I’d interviewed on both sides of grisly wars before and I knew how to keep an interested, open expression and just ask questions. But I picked at his memory a bit, tried to ferret out any concern over Stalin’s image in the rest of the world. Nope. Nada. If Valeriy had any clue that Stalin was not widely considered a working man’s hero, he was a better poker face than I.

We bedded down in the living room, covered in beautiful Russian wool carpets, paintings and antique furniture. Obviously this household had once known much better times.

Then, at five o’clock in the morning, as light was just breaking through the trees, Valeriy shook me awake. His face was drawn and ghostly white. His hands trembled and his voice rasped in a terrified whisper.

“Get up! You’ve got to get out now! Go! The FSB is coming for you! Someone snitched.” The FSB is supposed to be the Russian secret police, but colloquially that could mean anything from paramilitaries to mafia to rogue state actors.

Valeriy’s terror was all the more contagious because of his certainty of safety the day before. Kirt and I threw on our packs and ran through the trees on a trail behind Valeriy. We burst out of the woods along side a narrow highway and Valeriy flagged down a bus with letters spelling out Kyiv across the front.

“Don’t come back,” he called out as we swung aboard.

That was my experience in Eastern Ukraine in a nutshell. The most important theme across the whole week we were in the region was the incredible kindness of complete strangers, who—usually for no self-interest that I could discern—risked everything to help, shelter us, smuggle us from place to place or direct us to the next contact, all because they knew the medieval system of mafia-run, black-market coal mining that employed the labor of starving children was terrible and untenable.

The chain of good-hearted, brave people it took to get Kirt and me to that story was humbling. We published it in a major feature for the international newspaper The Christian Science Monitor. It inspired other researchers, but sadly it likely didn’t lead to any immediate improvements in the lives of the people of those desperate villages.

We tried, but the work of a journalist is to highlight one crisis after another. Usually, the follow up falls to others.

But today that story takes on new significance, and my knowledge of Eastern Ukraine—such as it is—is sought out due to the current war. I’m always hard pressed in these conversations to explain, “No, really these people were Russians. They spoke Russian… Yes, they helped us. They probably saved our lives a few times… Yes, they had portraits of Stalin… Yup, they were clueless… Yes, they literally shared their last remnants of food with us.”

And damn it! That is not a political statement. It is just a fact.

Yes, the Russian invasion is wrong, illegal and unwarranted. Yes, even in the East where there are a lot of “ethnic Russians,” it’s still wrong. Putin is a madman. So many Russians are duped by propaganda. Valeriy was. He thought Stalin saved his family. Heck, maybe Stalin did save his family, after he murdered a third of the Ukrainian population, which was why all that good farmland was empty and waiting for Russian resettlement back in the 1930s.

That doesn’t make it less of a fact that Svetlana, Vasya, Valeriy and Vasily risked their lives to help us, a couple of shoestring American journalists, get the word out about the excesses of their mafia overlords, That doesn’t erase their kindness and courage. And it does not mean I will ever hate all Russians or feel comfortable around the online vitriol and hate speech about ethnic Russians in Ukraine.

It’s understandable, and if your family or friends are under bombardment or held hostage in a blockade, you get some free passes to emote, in my book. But don’t ask me to go along and laugh at sick jokes about killing scared young recruits who don’t know where they are. I’ll work on planning routes for refugees and aid workers until I am sleep deprived and tottering, but hate has nothing to do with it.

I know there are Russians who do know the truth of the matter and they are horrified and ashamed at their state’s actions. They have my sympathy, not my hate. I’ll help them too, if I can.

And those who don’t know… Those who are taken in by the propaganda? I hope they’ll get out of that and force this war to stop. I’ll help there if I can too, and I know to be careful, because those guys who threatened to kill us in the pub, they were ordinary small town Russians too.

This isn’t naïveté. It’s just realism. People are people here or over there.

If given a chance, some people will go to extremes, grab all they can for themselves no matter who it hurts, hurt others just for kicks or a sense of power, scream hate and even kill. People here have that capacity, when they think they have the backing of those with power, as they did on January 6, 2021. And people there do too. The greater the feeling that violence is condoned, the greater the atrocities.

It isn’t a fundamental difference in humans. It’s just whether or not we let the bad wolves in our midst be in charge with guns or whether we insist on good wolves and the rule of law.

No matter the times or the conflict, there is always someone we’re supposed to hate. Most often, it seems like it’s right-wingers and rural “conservatives” preaching hate against this or that group, sometimes someone we’re at war with, sometimes someone coming to work the hard, dirty jobs they don’t want.

But the war in Ukraine has seemed to give educated, liberal folks a weird kind of license to hate. And the terms and jokes I’ve heard out of people I thought were level-headed and kind are sobering.

It’s one more reminder that no category really matters, not left or right, not ours or theirs. What matters—and it matters a great deal—is what kind of person an individual chooses to be right now in the moment, relating, thinking, talking. That line you cross when you let a little hate speech go because it feels good to release some of the pent up frustration, that’s the line that matters.