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.

Still dressed up: Greeting unknown humans with stubborn positivity

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.

A world designed for people like me

I have defended the terms “disability” and “disabled” in the past because I like both linguistics and logic. But today I’d like to do a thought experiment that may put those terms in peril.

There are those who don’t like the word “disability” because it implies that only one type of body is right and good and perfect. It places emphasis on some particular capacity that someone may lack when compared with a supposedly perfect standard, while ignoring non-standard capacities they may have that the standard human doesn’t possess. .

The Deaf community has made a good case for getting rid of the disability label. Many Deaf people live without any sense of disability because they live primarily within a community that uses sign language and written communication. Both entertainment and safety are also well developed in this community. And it is only when they enter the hearing community that Deaf people become more likely to suffer injury due to mishaps or to fall victim to police violence.

An image of a middle-aged blonde woman with sunglasses and an expression of peace - Creative Commons image by Marneejill of Flickr.com

An image of a middle-aged blonde woman with sunglasses and an expression of peace - Creative Commons image by Marneejill of Flickr.com

If a person is perfectly safe and able in one society but not in another, is the fault or lack of ability with the individual? Or is it rather a problem within the society?

Many of us assume it is the individual who should adapt. At the very least, it is easier for an individual to adapt than it is to change a whole society, and when we travel to different countries we accept that it is a good idea to adapt somewhat to the culture, and even more so, to the laws of that country.

But most people with disabilities don’t have the strong community and institutions that Deaf people have built up through years of struggle, and we likely never will. Disabilities come in many shapes and sizes and it is impossible for each group to build their own society. We will always be strangers and foreigners in a world that isn’t built by or for us. Beyond that, in many ways we cannot adapt to society for various physical and neurological reasons. That is why efforts have been made to adapt society just enough to give us a narrow opportunity to live.

Abled people often express a bit of resentment over these adaptations, as if parking spaces that allow people with mobility impairments to get to the store at all are somehow a huge advantage. I recently stumbled across a news story from my home state of Oregon, where I am moving in a couple of months that sent raw fear into me.

In the town of Brookings, Oregon, a woman named Jennifer Gaymen, who is visually impaired, like me, and also mildly mobility impaired, also like me, was arrested, jailed and charged with a felony for simply surviving in the only way she or I can. Like me, she can’t drive or move in the roadway, due to vision impairment. And she also can’t walk long distances due to an orthopedic illness. So, she rides a mobility scooter slowly on the sidewalk much like a wheelchair user. I do the same thing.

But a few years back, abled people in Oregon felt resentful of these mobility scooters, much like the disabled parking spaces. There were some abled people who abused electric scooters on sidewalks, behaving dangerously and scaring or injuring pedestrians. So, a law was passed banning all use of electric scooters on sidewalks. Because of the resentment toward people with disabilities this law was expanded to include mobility scooters and even to bar the use of mobility scooters on roads by anyone who doesn’t have a full automobile driver’s license, which essentially excludes the very people mobility scooters are intended for.

This is despite the fact that a search failed to unearth any case reports alleging that any person with a disability using a mobility scooter has abused pedestrian rules or endangered others on sidewalks in Oregon or anywhere else.

This law renders Jennifer Gayman and me—people who are normally quite active and capable—severely disabled and essentially homebound. Gayman was cited for riding her mobility scooter and then jailed and convicted of a felony for refusing to abandon her expensive mobility device in the middle of the night in the winter and walk two miles home, which she physically could not do.

She has sued the city under the American with Disabilities Act, a federal law which clearly states that people with disabilities can use whichever mobility device best fits their needs and that local laws must adapt. But she has been homebound and restricted from getting around for two years while the case languishes in the court system.

Once I might have been significantly disabled before this kind of technology existed, but today with the help of technology the “dis” or “un” abling part of mobility is significantly mitigated. If a law then imposes artificial disability on me, how should I be labeled? Does it make logical sense to say this is my “disability?” It isn’t my “dis” (wrong or lack of) ability that causes me to be homebound in that case. It is more correct to say that I am a “restricted” or “banned” person, because it is external restriction that imposes the primary limitation.

Maybe we should start using these terms when referring to individuals who live in a society where rules, laws and social norms restrict or ban them when reasonable and healthy adaptation is possible that would make them fully capable.

This all got me thinking about what a society would have to look like to make me completely abled without restricting others. Even allowing reasonable access for mobility scooters only makes me theoretically able to move a little bit—slowly and very locally.

Here’s the thought experiment then. What would it take to really make it so a person like me who is legally blind with some mobility impairment would be able to view my differences like many Deaf people do, simply as a difference rather than a disability?

To be clear, I can’t cover every type of different body or neurological type because I don’t have all those experiences. This is just an exercise in figuring out what would make the difference for me.

An image of older adults riding bicycles in professional clothing next to a modern street car in Copenhagen, Denmark - Creative Commons image by Dylan Passmore

An image of older adults riding bicycles in professional clothing next to a modern street car in Copenhagen, Denmark - Creative Commons image by Dylan Passmore

Getting around

The first issue has to be mobility because even though some of the other issues are arguably more important, history has taught us that if people with disabilities can’t get to the table, nothing ever changes. Secondly, the mobility issue is the one that would require the most difficult adaptation from society.

What I need is to be able to get around both locally and beyond about as fast as other people. That is simply what I would need in order to “not be disabled anymore,” to be able to work competitively, take care of all of my responsibilities and take advantage of all the opportunities everyone else takes for granted. I currently really appreciate ANY mobility options, even when they are much slower and more difficult than those most people enjoy. But this is what it would take to make me “abled.”

What could a society look like that would give me that?

Well, public transportation would have to be the mainstream. If there was personal automobile transport that you have to see in order to drive, it would have to be a secondary thing. Roads would not be what goes everywhere. Rail lines would. Roads would be the secondary sort of thing, like a hobby or something special.

Parking lots would be small and easily navigable on foot because most people would use trams, trolleys and trains for major transportation. Our cities would no longer be 60 percent asphalt, maybe 20 or 30 percent at most.

Because they would be used by vast numbers of people, these rail transport systems would be well funded by taxes and affordable for people to use, though it would be an expense, like gas is to many people today. You would hardly have to wait for the next tram or train in most places because that would be “the main road.” Because of the relative high speed of rail transport, the fact that these vehicles have to stop to pick people up at various stops would even out and transportation would be about as fast as road transport is today, except over long distances it might well be much faster. And I’m not even counting traffic jambs in this accounting.

All these public transport options would accommodate not just wheelchairs but every kind of mobility device and likely also bicycles for everyone who wants them. The first would ensure accessibility for all and the second would just be common sense.

Under these conditions, people with disabilities would move just as fast as abled people, and thus in a lot of ways, they would become abled and would be full competitors for jobs and full contributors to all of society.

Routes for bikes, scooters and walking would be everywhere and well adapted to the landscape and the rail transport system. There would always be a ramp. There might be some lanes for fast movers where pedestrians, children and people with vision or neurological impairment might not fit in, but there would always be a slower alternative and safety rules for when these intersect.

People with vision impairment could have color-coded elements on their scooters or bikes to warn faster riders about their difference in reaction times and perception, but they would also have to demonstrate that they were not dangerous to pedestrians and those slower than themselves.

Yes, these changes would mean that society would have to adapt to make people with mobility, vision and other impairments equal and abled. However, these adaptations would also help to solve climate change and be environmentally friendly for everyone. The reductions in air pollution and the greening of vast swaths of asphalt in cities would improve everyone’s quality of life and would likely mean more pleasant community space for everyone. It would require adaptation by society but the benefits would also go to everyone.

Social norms

The other most significant adaptation would have to be in social norms. First, we would have to start talking about diversity in terms of different shapes and types of bodies and brains as much as we talk about it when it comes to race and sexual or gender identity. It would help that, with the mobility adaptations detailed above, the fear of disability as debilitating and physically limiting would begin to abate among all people.

But some prejudices and stereotypes hang on long after legal and infrastructure restrictions have been lifted from a group of people, as we saw when the civil rights movement lifted many of the legal restrictions on people of color. It would take some time for social norms to develop so that people would not respond so negatively to a person with a facial or speech difference, but just as reactions to people with various skin tones have changed, this too can change and would go a long way toward making disability no more than a difference.

Just as there is a push to change social norms today to use the pronouns preferred by individuals with non-traditional gender identities, some social norms would need to change with regard to disabilities as well. People would need to become more flexible and educated in how they interact. Because 15 to 20 percent of people have a disability that affects communication and social interaction, flexible ways of interacting would become part of our educational system for everyone, just as spelling rules and how to use money are part of the curriculum today.

Everyone would know to speak directly and clearly to a Deaf person. Everyone would know to let a Blind friend know when they approach and who they are. Everyone would know not to move a Blind person’s things. Everyone would know how to interpret and engage with people with neuro-diversity because it would be a normal part of daily life and would be as much a part of manners as “please” and “thank you.”

Bullying people about a physical, neurological or other kinds of differences would become as anathema as any other kind of harassment. It likely wouldn’t disappear as harassment that we clearly see as serious and relevant today has not disappeared, but it would be treated with the same seriousness that assaulting a privileged person is in today’s world, and its occurrence would be massively reduced.

As a result, attitudes toward friendship, romantic relationships and professional relationships with people with any sort of difference would markedly improve likely without the need for much more in terms of explicit rules or “political correctness.”

Public services and commerce

Naturally, buildings and public spaces would be built to accommodate the various shapes and sizes and legs and wheels of modern humans. Ramps and elevators would be maintained and mainstream.

Public signs would be bold and large print—larger than surrounding advertisements. Advertisements would be given a specific space, and not allowed to dominate attention or prey on neuro-diverse people or disorient visually impaired people.

Many signs, buildings, transportation vehicles and other public objects would have a small short-range transceiver which could be picked up by bluetooth and cell devices, so that blind or text-impaired people could listen to an audio transcription or description through earbuds.

Thus a street car would announce over a common frequency its number, direction, stops and conditions. A hospital or mall map or sign board would give verbal directions directly into the earpieces of those who pointed and clicked at it. Public restrooms, information booths, checkout counters and other important points would provide a directional beacon and broadcast over several hundred meters.

An image of grinning military veterans with prosthetic limbs fist bumping while using mobility devices freely in the middle of a major road - Creative Commons image by Herald Post

An image of grinning military veterans with prosthetic limbs fist bumping while using mobility devices freely in the middle of a major road - Creative Commons image by Herald Post

There would not only be Braille and large high-contrast print on elevator buttons but also on the aisles in grocery stores and on other things everyone needs to use. All labels on goods in stores would be required to have a QR code (turned outward on the shelf) which could be quickly scanned for audio description. Sections of a store would also be clearly marked with large print and short-range audio beacons.

The brightest and most visible signs would not be advertisements but rather necessary information. Shopping would become a regular, pain-free activity even for visually impaired people.

Instructions posted on walls in public offices would show up as audio notifications and blind people would no longer have to rely on the kindness of strangers to inform them of rules or procedures when visiting the local city hall or health center. A lot of this would require technology but it is all technology which is already easily available and in wide use today for other things.

Technology, entertainment and work environments

Technology would be a great help in opening up productive engagement to people who were previously “disabled” by our society in so many other ways as well. In my case, facial recognition software could be used with a small camera worn on clothing or glasses that would recognize the faces at least of the people I had already met and would identify them to me with audio notifications. This would break down vast barriers in professional networking and community interactions.

Similar technology could be used to help visually impaired people navigate. Already mapping technology is able to tell us how to navigate within a few meters accuracy. A little investment could render blind people significantly abled by giving on-demand information about nearby addresses, hazards and points of interest.

Technology could easily be developed that would provide detailed description and warnings on familiar routes that the individual could input manually, including things as detailed as when a step is needed and which direction to turn and how much. With the technology we have today cell phones could easily tell a blind person where to find a known person or a nearby business or landmark with detailed on-foot instructions. While most of these technologies stop their assistance once the person is close enough to theoretically look up and see what they are seeking, the assistance could be extended for blind people.

One piece of technology which I have not yet seen but which could be developed with our current technology and which would greatly increase safety for blind and visually impaired people would be a program for a camera mounted on glasses or a headband that would identify obstacles through an earphone.

While a properly made white cane is actually a pretty nifty piece of mechanical technology, it only identifies obstacles on the ground and many injuries happen because of signs, awnings, tree branches and the like at higher levels, especially at face level. Even service dogs (may they be always appreciated) don’t always catch everything.

We have devices that beep when there is an obstacle behind a car backing up, and we could have a much more sophisticated detector mounted on glasses that would help a blind person navigate safely. The same technology with a bit more development could even be adapted to help with tracking moving objects, animals and people, and might eventually provide an aid to self defense and sports.

Some technology changes would require human intervention, at least in the beginning. We would still need humans to put closed caption text and audio description into movies and TV shows or onto media images, but these would be regular jobs within these industries because people with visual and auditory differences would be normal members of society with the economic clout to matter and even if they weren’t a “big enough” demographic to be “profitable,” it would be part of the social norm, to include these things.

Would there still be jobs that I couldn’t do because of my vision and mobility differences? Sure, there would. I still couldn’t be an airplane pilot or a pro-basketball player in the sighted league. But neither could most people. It takes a very specific set of abilities and skills to excel at those jobs and you don’t have to be what is considered “disabled” today to be out of the running. I also couldn’t be a banker, because I am constitutionally incapable of focusing on money that much. We would all continue to have different talents and ability levels in specific areas.

In a fully adapted world, not everyone would be suited to every job. But everyone would have some useful and appreciated talent. Technology would help in in many cases but it would no longer be surprising that a blind person or a person with a wheelchair is a successful professional.

A few more details just for me

Everybody has their own specific needs and with the development of technology I hope that some things will become more affordable that would help me to do things as fast as everyone else.

For example, I would love to have talking measuring cups or even an electronic mixing bowl that would measure or weigh ingredients audibly as I put them into the bowl. Another thing that would allow me to cook my family’s meals better and faster would be small electronic chips on my jars and containers of ingredients that would make a small sound when called for. The calling could be done from a cell phone through a voice activation system like Siri or Alexa.

I enjoy gardening and one of my pet peeves about my vision is that it is very hard to weed when I cannot see the difference between my small plants and the weeds. A technological solution in the future might be a program on a camera mounted on glasses that could be taught through a push of a button to recognize young plants at a certain stage of development. I could then find one of the plants I want to preserve, point the camera at it, push a button and dictate to the program what plant this is (since plant identification programs aren’t yet very accurate with very young plants). I could do the same with common weeds.

Then as I weeded the program could give me a running commentary of which plant the camera was pointed at. It might not be 100 percent accurate, but given the very specific identification in the immediate environment, it would likely be quite good. Beyond that, maybe someday scientists will develop gardening gloves with sensors on the finger tips that can differentiate between various plant DNA. I’m getting a bit sci-fi here but the fundamental technologies exist.

Like many people with mobility disabilities, I watch the development of ever more flexible mobility devices and ever lighter and stronger batteries with great interest. I recently saw a two-wheeled wheelchair like vehicle based on a Segway which can handle light off-road terrain. It’s currently prohibitively expensive, but the technology is there to allow me to get back into nature on the hiking trails I used to enjoy even through the pain of mobility impairment. I hope more and more devices will be made for people who are physically active, strong and well-balanced, but who have joint or bone difficulties that make off-road movement difficult.

I would love it if there was a program using a camera mounted on glasses that would help a blind person aim at a basket in basketball or strike at a baseball with a bat. It could be done but it would require the athlete to develop a lot of skill in responding instantly to the signals. But then, every athlete needs a lot of practice.

When I was a parent of young children, I tried to find some sort of bracelet that my toddlers couldn’t take off that would help me keep track of them with even greater accuracy. I got very good at telling exactly where my toddlers were and what they were doing by hearing. But a locator that could be called or which would make a noise if the child exited a prescribed area would have made our family life less rigidly controlled.

As it was, I had to have gates everywhere and be extra vigilant. It was doable but required a huge effort that could have been put into more fun and relaxation in those magical years with young children.

Those are all the things I can think of just now. I realize that I didn’t include anything in there about making visually beautiful things accessible to people with vision impairments. I would love it if museums always made tactile replicas of interesting and fragile exhibits so that people with vision impairments (as well as the world’s much more numerous tactile learners, such as nearly all children) could touch them.

But when it comes to seeing a sunset or a mountain vista, I actually really enjoy these already. I’m not totally blind, of course, and there is a need for writers to continue to have jobs creating endless and wonderful descriptions for those who are. but I believe beauty is something we all experience in our own ways. We can try to share it with people who perceive the world differently, but the truth is that all of us are “differently abled” in that regard.

Final thoughts

When I envision a world that is fully adapted so that I would no longer be “disabled” or “restricted,” it turns out that this imaginary world would be better for everyone else too. OK, some people might have to get their driving fix through video games or on special sports ranges, but with climate change, they’re going to have to do that anyway. And really is one hobby actually more important than the 20 percent of the population who cannot drive for one reason or another?

But we don’t live in that world. We live in a world where, in the state of Oregon, Jennifer Gayman (and every other person with some mobility difficulty who also cannot drive) is made to be severely disabled. This whole experience—seeing that news story and doing this thought experiment—has changed the way I feel about the word “disabled,” which I used to think was a reasonable factual descriptor.

In a lot of situations, we may have to start referring to some of us as “restricted” or “banned” people, because it isn’t the abilities of our bodies doing this to us, but rather the artificial constructs of society. When the benefits of available technology are denied to us, either by law or by economic marginalization, we are “restricted,” not “disabled.”

While I was writing this post, my father went and talked to the local police department where I will be living in Oregon and obtained an exception for me to be able to use a mobility scooter in that small town. I’ll have to mark it with large disability signs, which I really don’t mind personally. It’s the fact that my reprieve is limited to one town and even one generation of local officers that is worrying.

I will likely never live to see the adapted society I describe fully realized, but I do hope that I might just see a day when these kinds of restrictions imposed by society on me and many others are viewed the same way we now view racism or transphobia—at least by allies. We’ve been asked to wait our turn for inclusion for a long time. I hope our time will come.

Measuring disadvantage: A well-intentioned concept gone horribly wrong

A few days ago, a blind woman with a white cane and a guide dog ordered a taxi in the city close to where I live. When the taxi arrived she got into the back and her guide dog was about to get in as well, but the taxi driver insisted that the dog was not allowed in his vehicle, despite national laws that bar discrimination against licensed guide dogs and their owners.

The woman argued with the driver and insisted that she had already paid for the taxi through her mobile app. The driver first shut the door, separating her from the guide dog and insisted that she would either go without her guide dog or she would lose the price of her fare because he would report that she hadn’t shown up.

The woman protested and the driver ordered her out of the cab and threatened to call the police.

The woman then began to voice-dial the police herself, due to the driver’s threatening tone and her knowledge of the law. The driver attempted to grab her phone. Then, cursing her with profanity, according to a witness, he opened the door and violently dragged the woman out of the vehicle. The witness’s video shows the woman roughly hauled from the taxi, so that she fell and was left lying in the open roadway where vehicles passed as the taxi drove away from the scene.

At the last second, the driver tossed the woman’s white cane out of a window and onto the road. In the video, the woman is seen slowly getting to her feet. Despite the presence of moving cars and a major hotel, the only person who came to her aid was the witness with the phone who had to run down several flights of stairs to reach her.

I haven’t been on social media much in the past six months. I used to try to keep up with Facebook for the connections to old friends and for the ostensible positive effect on marketing books.

But first activism and then family crisis interfered until I found myself popping onto Facebook only every week or so, to go through notifications and then get off. I used to get pretty worked up about some of the hideous things on social media, and now it is more like an intellectual dismay over the state of the world. I rarely have the impulse to get into a big argument or defend my position on social media these days.

Today for the first time in many months I commented on a post that got under my skin. And it wasn’t even about that incident with the woman and the taxi driver, which painfully reminds me of a time a few years ago when I was physically assaulted and threatened with police while asking a driver illegally parked across a sidewalk to either move or assist me because I couldn’t step out into traffic with my two toddlers to get around his vehicle, given that I can’t see.

The post that got at me this time was worse than just a single incident. I ended up doing some extra research and found my stomach boiling with frustration and even anger. And no, it wasn’t Trump supporters, neo-Nazis out to get my brown kids or white supremacists parasiting off of my spiritual symbols either (though those are things that have lit a fire in me in the past).

No. This time it is allies, just allies being knee-jerk and thoughtless in a way that leaves me sick with sadness.

Creative Commons image by Oregon Department of Transportation

Creative Commons image by Oregon Department of Transportation

The post was an online tool for measuring the intersectionality of oppression, called the Intersectionality Score. The theory of intersectionality is one I am well acquainted with and I’m not even particularly adverse to attempts to roughly measure it the way this tool does. It is a reasonably effective way to portray intersectionality both visually and kinesthetically and to allow people who may not have a lot of life experience with the issues to understand the interplay of factors in oppression and marginalization.

I guess the thing that really gets to me is when something reasonable and hopeful is finally done, but done so badly that it perpetuates harm.

Most progressive people who understand intersectionality have always insisted that it cannot be measured and that privilege cannot be compared. We don’t have any objective way of knowing if a Black person in Detroit faces more barriers than a disabled person in a small town in Nevada or visa versa, and most attempts to make a direct comparison are rightly shot down. But this Intersectionality Score tool makes an attempt to do just that, though it makes no vehement claims to accuracy.

But whether it claims accuracy or not, it does reflect the common attitudes of most woke progressive folks and for the past several months those attitudes have been one of the factors driving me away from social media and activism.

The Intersectionality Score tool isn’t the problem, only a symptom of attitudes that I have seen widespread and possibly increasing in recent years.

You see, the tool weights the various factors involved in marginalization—disability, economic class, gender, migration status, native language, race, sexual orientation and so forth (consciously listed alphabetically by me, not by them)—and you get a score based on where you fall on separate spectrums of each of these categories. It is reasonably complex and the fact that there are spectrums—rather than on/off switches—reflects an attempt at nuance and accuracy.

Most of the weighting is reasonable—judging from statistics of discrimination, hate crimes and life expectancy of various groups as well as broad experience of individuals known to me—with one glaring exception.

Perceived racial identity is the factor weighted heaviest, due to widespread discrimination, racist attitudes, police violence, social marginalization and a host of other pervasive adversities. Gender is given a bit more weight than sexual orientation and gender identity, probably because of wage inequality, endemic sexual harassment, domestic violence, social dismissal and other problems faced by women on a daily basis. Sexual orientation and gender identity do get more weight than say economic class, which could be debated, though given the number of fatal hate crimes against gay, lesbian and trans folks, a case can be made.

But the one factor that stands out as being dismissed and belittled in the Intersectionality Score tool is disability.

One can determine the weight given to any specific factor by leaving all other sliders neutral and sliding the bar for one factor all the way to each extreme. Out of 100 points, race is weighted at 27 points. That means that if you have a completely and utterly white person steeped in white culture and a completely and utterly black person steeped in black culture, but in all other respects they are somehow miraculously average, the black person is apparently disadvantaged in our society by 27 out of 100 points.

I am definitely on the far white end of that scale myself, but after years of study and watching my children who are not white grow up in a racist society, I have to conclude that this is a conservative estimate of the difference white privilege makes.

Gender is given a weight of 15 points, which again seems reasonable though conservative, to me as a woman, though I encounter irritating micro-aggressions daily and humiliation every now and then due to my gender. Sexual orientation is given 10 points, which I can imagine may well be justified.

But disability, even the most severe types of disability, is given just seven points out of a hundred.

Don’t get me wrong. I can imagine how a person without a disability, who has not researched the issue or had any significant experience with disabilities might think that although having a disability disadvantages a person because they actually lack some crucial abilities that isn’t what the Intersectionality Score is measuring. The uninformed able-bodied person can easily think that most of the issues concerning disability are unavoidable physical, neurological or biochemical problems, rather than socially constructed barriers, and thus not covered by the concept of intersectionality.

The problem is that this understandable able-bodied person would be wrong. And an uninformed person has no business designing and putting out a tool like this in public with links to major initiatives like Teaching Tolerance, while dismissing the social exclusion faced by people with disabilities as less than half as impactful as modern gender discrimination, for instance.

On any average day, the physical trouble being blind and somewhat mobility impaired causes me is a nuisance, something to be taken into account and worked around. The social impact, however, is overwhelming and has shaped my entire life from employment to social circles, from physical and intense psychological assaults to the necessity of emigrating to another country to achieve a basic level of freedom. Dealing with patriarchy as a woman is a pain and sometimes dangerous, but it doesn’t even come close to the impact of oppression and marginalization due to disability. And my disability is far from the most marginalizing possible.

It is hard to imagine that the designers of the Intersectionality Score tool were entirely uninformed about this. Here are some basic statistics that can be found with a 10 minute Google search:

  • 47 percent of people with disabilities live in poverty.

  • Internationally 90 percent of children who have a disability still don’t attend school today.

  • People with disabilities are 70 percent more likely to be the victim of a violent crime.

  • A third of all employers openly state that they do not hire people with disabilities because they assume people with disabilities cannot perform required job tasks, regardless of their track record.

  • Only 35 percent of people with a disability, who are of age and able to work, actually have a job. About 80 percent of non-disabled individuals, in comparison, have a job.

  • 6 percent of women with a disability in the UK have been forcibly sterilized.

  • Only 45 countries in the world today have anti-discrimination laws that aim to protect people with disabilities.

  • A quarter of people with disabilities face at least one incident of discrimination every single day.

  • 40 percent of people with a disability in the UK encounter discrimination or socially constructed barriers when accessing basic goods and services like grocery shopping, medical services, housing and education.

  • 38 percent of able-bodied people admit to pollsters that they believe anyone with a disability is a burden on society.

  • 28 percentage of able-bodied people say they resent any extra attention that someone with a disability receives.

  • Nearly 70 percent of able-bodied people say they actively avoid people with disabilities in social situations out of discomfort or irritation.

  • Official estimates say that in the UK alone over 100 hate crimes are committed against individuals with disabilities every single day. An OSCE report states that hate crimes against people with disabilities, including assaults with more than one attacker, are critically under-reported, widespread and continuous, although they are much less discussed, studied or recognized by police than hate crimes based on race or religion.

  • The FBI reported that serious hate crimes of national interest against people with disabilities rose by 70 percent between 2016 and 2017 and mentioned that hate crimes against people with disabilities are still vastly under-reported.

  • The Harvard Implicit Association Test shows that out of a sample of more than 300,000 people, including people with disabilities themselves, nearly 80 percent of those who voluntarily took a psychological test have an automatic, if often subconscious, preference for able-bodied people over people with disabilities.

The designers of the Intersectionality Score tool might well argue that these problems are primarily about people with “severe disabilities” only. However, their tool uses a slider precisely for this reason. Only at the far end of the scale is an individual considered completely able bodied and without disability. And yet, their assumption is that the most extreme end of the disability scale implies only very minor social marginalization.

The designers of the tool may also be assuming that severe disabilities are rare. Again, it is a wrong assumption arrived at precisely because people with significant disabilities are so marginalized in society that they are often not present where able-bodied people are present. Nineteen percent of the US population is categorized as having a disability, while ten percent qualify as having a severe disability.

The designers of this tool may also argue with my anecdote in the beginning of this post, saying that the problem the woman faced was not based on prejudice related to her disability but related to something (the guide dog) which is only an accessory to the disability. Yet these same woke progressives have no trouble dissecting this same logic when police officers insist they shot a young black teen because he was wearing a hoodie, not because he was black, or when an employer insists he was not discriminating against a black woman in hiring but objecting to her “unprofessional” hairstyle.

I am going to mention here another possible explanation for the way the Intersectionality Score tool is designed, because it is inevitable that the argument will be used. Some will say that people with minor disabilities or health issues (peanut allergies are specifically belittled as insignificant on the site) will inevitably rank themselves as having a severe disability. The designers of the tool may claim this is the reason for the low weight given to the whole issue of disability.

The problem here is inherent to the attitudes toward people with disabilities. The designers of the Intersectionality Score tool trust people of color to rate their level of color versus whiteness. They trust the honesty of LGBTQ+ people to rate their own experience. But they don’t trust people with disabilities to be intelligent, fair-minded and understanding of nuance. And that’s just the tip of the iceberg.

Disability is the least studied and the least mentioned marginalization factor among progressives and the general population alike. Often as not, diversity lists that insist on inclusion of people regardless of race, gender and so forth, don’t include disability or include it only under “other” categories.

Until recently, even I believed prejudice against people with disabilities was minor compared to other types of prejudice. I assumed this was an established fact because of the way my woke friends and colleagues only tacked it on at the end if at all when discussing prejudice or oppression. I believed it was minor, despite living through it personally day after day, personally experiencing hate-based assaults, hiring discrimination and community shunning.

I figured, along with most other woke progressives, that while people with disabilities experience some discrimination, people are much more likely to pity us than hate us. I assumed that my own experiences of hate and social marginalization in a wide variety of situations had as much to do with being a non-conformist as it did with having a disability.

That was until I encountered the Harvard Implicit Association Test. The results of this test are primarily offered only AFTER one has taken each test, so I have constructed bar graphs to show you the results more easily. The test is the same for each category. The respondent has to categorize images and words at high speed, depending on specific instructions given.

The test goes too fast to consciously manipulate. If you try, you will simply get a result saying your test couldn’t be processed or you made too many mistakes. But if you just do your best and have a minutely harder time categorizing one group of people with positive terms, the test will score you as being subconsciously biased against that group.

You might think that these split-second differences would be pretty random, but when distributed over hundreds of thousands of test respondents, they aren’t. The results show us what we already know about prejudice based on race and sexual orientation. There is a lot of bias out there, even among those who consciously want to be unbiased and anti-racist.

The Implicit Association Test doesn’t necessarily mean that a given individual will discriminate or even agree with their own test results. The official website of the Harvard Implicit Association Test states that, “While a single IAT is unlikely to be a good predictor of a single person’s behavior at a single time point, across many people the IAT does predict behavior in areas such as discrimination in hiring and promotion, medical treatment, and decisions related to criminal justice.”

That is to say that while you can’t take someone’s test score and know whether or not they will discriminate personally tomorrow, if a group has high scores of implicit bias against another group, discrimination and prejudice will rise accordingly. Groups that demonstrate higher implicit bias discriminate more and behave in more prejudiced ways over all. Groups that are less preferred in the test, experience more discrimination and social marginalization.

And as the charts of results show, 68 percent of respondents, representing more than 800,000 tests between 2004 and 2015, demonstrated an automatic preference for light skin over dark skin. The results are nearly identical on a similar test featuring photographs of European Americans versus African Americans, which was taken by over 3 million people. The test results are anything but random.

While around eighteen percent of people were neutral when it came to both race and sexual orientation questions, the bias was somewhat less on sexual orientation. For some of us, this is surprising information. If you grew up in a conservative Christian area, like I did, you get the impression that racism may exist but it is repressed, while homophobia is often loud and proud. But that loudness is confined to its homophobic specific group. Among those with anti-gay bias, there is a significant block—about 40 percent—where that bias is severe.

The same goes for bias against people with disabilities though, only more so. Of the 78 percent of people, who demonstrated bias against people with disabilities, half showed severe bias. The severe bias group here is larger and more extreme. The types of words associated with this negative bias against people with disabilities are not merely about pity or dismissal, but rather terms like “hatred,” “dishonest,” “ugly,” “terrible,” “poison,” “annoying,” and “disgust.”

I am left with this striking discrepancy. While the Harvard study, which is based on a scientific and measurable indicator, shows that people with disabilities face significantly greater potential prejudice and negative bias in society even than people of color, the tool designed by woke, progressive allies dismisses disability as a significant factor in the intersectionality of oppression and social marginalization.

It is difficult to avoid the obvious conclusion that the negative bias against people with disabilities discovered in the more objective Harvard study played a role in the design of the Intersectionality Score tool, and it continues to play a role in progressive and activist communities, which we have looked to as our best and only hope for equity and inclusion.

My experiences in progressive and activist organizations—too often being silenced and marginalized over ostensibly “interpersonal” problems with people I actually had no quarrel with—begin to take on new connotations.

Though I doubt the designers of the Intersectionality Score tool set out to perpetuate harmful dismissive and belittling attitudes toward people with disabilities in progressive communities, their site has that effect. Comments and responses on the site don’t appear to be up-to-date, so it is unlikely that they will listen, but I hope at least this one site will be changed to better reflect the realities we live with.

In the end, after getting it all down in words, I find that the burning anger, which aggravating social media posts so often kindle, has cooled. I’m left instead with aching grief and dread of a world in which my child, who is vulnerable both in terms of race/ethnicity and disability, has few true allies indeed.

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.

Exclusion: The abled-privilege knapsack

Shutting down "the privilege Olympics"  should not be code for "screw the disabled"

You too are wearing an invisible knapsack. 

In 1988, Peggy McIntosh explained white privilege in terms of an invisible knapsack filled with unearned benefits and assets that white people carry with them almost entirely regardless of class, economic status, citizenship or other conditions.

It's a good analogy. I am now much more aware of my knapsack of white privilege and I can observe the effects of its contents on a daily basis. 

I have never seen a similar analogy used to describe abled privilege, but it is time someone did. In the last few years the necessity of acknowledging abled privilege has been shoved in my face ever more frequently. Even in social justice circles where such things are typically read, people with disabilities are continually being marginalized and silenced.

Creative Commons image by Woodleywonderworks

Creative Commons image by Woodleywonderworks

It is worth noting from the beginning that people carrying the white-privilege knapsack but not the abled-privilege knapsack or visa versa might well enjoy some of the benefits of the one they do hold, but there are assets in both of these knapsacks that are very difficult to enjoy if you don't have the corresponding assets in the other knapsack.

So, as a white woman brought up to be aware of white privilege, I can pick out instances of white privilege that I enjoy. These are not so much unearned privileges as they are privileges earned by every human but accorded only to those who are white--the privilege of driving or walking without a well-founded fear of being accosted by law enforcement for trivial or non-existant reasons or the privilege of relaxing into a social situation in which my race and culture is in the majority most of the time.

Having children who are not white has taught me even more about my own privilege and a few privileges I gave up by being part of a racially mixed family, such as losing the ability to shelter my children from the societal realities of racism and the very real dangers they face because of it. 

However, there are some assets in the white knapsack that I have pulled out broken or severely dented because of my disability. Unlike most white people, I am beset daily by the assumptions and prejudices of others, both unconscious and conscious. I rarely to through a day without being yelled at in public and someone pushes my "difference" in my face at every turn. 

I was once told explicitly that I was denied a job that I was qualified for because of my disability and I have wondered about the reasons behind many other rejections. I have faced social isolation, rejecting neighbors and hostile school teachers as well as accusations of stealing in stores.

I do not claim that it is the same as what people of color face. In fact, I know it is not the same. But people of color who are not disabled do also enjoy privileges that I cannot.

Please note that this inventory has very little to do with the actual health problems people with disabilities may have. It has everything to do with society’s reaction to and ultimate rejection of us. The benefits of privilege represent the minimum of respect earned by every human being from birth and this is true of abled privilege as well. It is our right to be treated with respect and dignity, to have opportunities and to be judged by our actions rather than by attributes we cannot choose.

So, here is an inventory of the abled-privilege knapsack with some prompts drawn from McIntosh's essay and the writings of Emestine Hayes.

Creative Commons image by Honza Soukup

Creative Commons image by Honza Soukup

If you are temporarily abled, you are wearing an invisible knapsack and in it you will find:

  • You can, if you wish, arrange to be in the company of people who view your physical body and neurological setup as normal and acceptable pretty much all the time.

  • You can turn on the television or open to the front page of the paper or open a random Google search and see people of your shape or appearance widely represented.

  • You can easily buy posters, postcards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people that look vaguely like you.

  • Your body shape is reflected in media, movies, books, magazines, online and in most people's imagination as good and capable, even if sometimes not perfect. As a result, while you may have insecurities or anxieties about your looks, they are not a barrier to social interaction.

  • Beauty, handsomeness, masculinity and femininity are personified by people of your general appearance and body shape. 

  • You can be fairly sure of having your voice heard in a group, even if most of the group has different abilities, body shape and speech from yours.

  • Authority most often rests in people who look like, speak like and perceive the world like you.

  • You do not need to make an in-depth study of the social habits and customary communication methods of your immediate neighbors in order to avoid daily conflicts of misunderstanding and unintended offense. 

  • You can criticize the government and talk about how difficult it is to access basic services without being seen as a moocher, a whiner, ungrateful or a burden. 

  • You can go home from most meetings of organizations you belong to and social gatherings you attend feeling somewhat tied in, rather than isolated, out-of-place, rejected, unwanted, unheard, barred at a distance, or dismissed.

  • You can attire yourself, if you choose, in a way that most people in your community seeing you and hearing you speak will assume that you are capable, responsible and trustworthy until proven otherwise. If you happen to belong to a group where this is not always true, a community of people who do look and sound like you and where you would be respected and trusted does exist somewhere in the world. Even if you don't live there, the knowledge that such a community exists bolsters your courage and self-confidence and in most cases you could move to such a community if outside pressure became too intense.

  • People make eye-contact with you and you are able to make eye contact with them. People make small-talk with you and you are able to make small talk with them. This initial social contact often leads to social connections, builds bridges and defuses potential conflicts. 

  • While you may have been teased at school, your chances of suffering from extreme bullying or complete social isolation in childhood are dramatically reduced. Your chances of suffering from PTSD and other acquired barriers to communication with others are significantly reduced.

  • Teachers at schools and universities almost always look like, speak like and perceive the world like you do.

  • The vast majority of students and teachers all through the education system sense the world, communicate and access textual materials in the same way that you do.

  • The entire education system is custom made and designed with scientific precision to benefit your type of brain and calibrated to meet the needs of your particular senses.

  • The language and writing system of your culture was designed by and for people who communicate and perceive language in the same ways that you do.

  • Public buildings, including schools, were built using models of your body, to make them comfortable and easily accessible to you.

  • You have probably not been called a burden. You were not called a burden to your school while you pursued your education.

  • If you are denied employment for which you are qualified, you can be pretty sure it isn't because of an attribute you did not choose and which does not affect your job performance.

  • If you are given an award, you can be pretty sure it is something you deserved rather than a publicity stunt by the patron of the award. 

  • You can take a job with an affirmative action employer without having co-workers on the job suspect that you got it because of disability hiring incentives.

  • If your day, week, or year is going badly, you need not ask of each negative episode or situation whether it is disability related.

  • You can choose public accommodations without fearing that you cannot enter or will be treated with disrespect in the places you have chosen.

  • When you plan social engagements, your way of getting to and into the venue is the same as that of most of your friends and you don't need to strategize, beg for assistance from friends or go to extreme expense to get to or enter the social venues your peers take for granted. 

  • You can always ensure that your living, schooling, work and or social environment will be among people you can communicate with and among which you will be considered "normal" if you desire.

  • You can always find a living, schooling, work or social venue that you can physically access and fully participate in locally if you desire. 

  • If you should need to move, you can be pretty sure of renting or purchasing housing which you can afford and which you can personally enter and use fully and from which you can get to schools and places of employment.

  • You can be pretty sure that your neighbors in such a location will view you as a full adult, if you are over 18 years old. .

  • You can go shopping alone most of the time, pretty well assured that you will be able to access merchandise and that a reasonable portion of it will fit you and be usable by you.

  • Whether you use checks, credit cards or cash, you can count on not being infantilized, shamed or dismissed by cashiers and other people you interact with in public..

  • You can arrange to protect yourself from harm most of the time.

  • You are twenty percent more likely to finish high school than a person with a disability who has similar intelligence. You are twice as likely to finish college.

  • You are at least three times as likely to have any sort of job than a person with a disability and much more likely to have a job that is of some interest to you, that provides some social prestige, that pays your bills and in which you can progress for a career.

  • You are half as likely to be hungry as a disabled person. 

  • You are a third as likely to be a victim of sexual assault and half as likely to be a victim of violent crime as a person with a disability from a similar social or economic group and geographical area. You are half as likely to be a victim of domestic violence.

  • You are twice as likely to have family and friends nearby or who you can contact in an emergency. You are likely to have a circle of friends to enjoy leisure time with and to network with for mutual benefit.

  • You are twice as likely to have a long-term relationship. You are many times more likely to have children.

  • You can swear or dress in second-hand clothes or not answer letters without having people automatically assume these choices indicate low intelligence, shaky mental state or poverty.

  • You can be temporarily out of work or sick without being called a burden or assumed to be unemployable.

  • You can do well in a challenging situation without being called "an inspiration" or used to further the religious or social agendas of others without your consent.

  • With education and credentials, you could become an an acknowledged expert on people who look, speak and perceive the world differently from you and you would not be asked why you did not choose to study your own group.

I am sure I have missed some. It's a large knapsack after all. 

This is one of those posts that will inevitably draw flack. It isn't that I don't care. I have simply decided that the amount of verbal shrapnel I'm getting in "progressive" circles these days for being an uppity person with a disability has reached a point where the potential flack from this post won't be a significant change. 

So let me lay it out there. I am sick of the dismissal of people with disabilities in activist circles. I am sick of being told, "you are white so you need to practice being silent for a while," when I have been silenced, dismissed and sidelined my entire life.

I am sick to exhaustion of being excluded, rejected and sidelined in supposedly progressive groups because I didn't take an insult or bullying in silence and answered back withotu profanity, without insults but nonetheless with unpalatable truth. . 

I get what people of color, indigenous people, speakers of languages other than English and people living in absolute poverty are talking about when it comes to wanting those with privilege to stop yammering about their perspective on society, their perspective on history, their perspective on underrepresented people and their perspective on social justice long enough to listen to the perspectives of those less heard.

I get it because while I have the privileges in the white-privilege knapsack, the English-speaker's knapsack and the resources-beyond-bare-survival knapsack, these are usually not enough to be heard without abled privilege. 

This is not "the Privilege Olympics." It is not a matter of whose usurped privilege is worse. It is almost always so different that it cannot be compared. Still mentioning "the Privilege Olympics" or equivalent is routinely used to dismiss and marginalize people with disabilities in activist circles.

We have huge, life-threatening threats to people of color. The crises for people of color are so extreme in some places that there can be no other priorities or even distractions.

Many of us, myself included, have agreed to this, stepped back and ceded precedence because while there are life-threatening and devastating issues for people with disabilities as well, the numbers seem to indicate that our problems are at least statistically less severe. We activists with disabilities have often felt that we can wait a little while and trust that our progressive activist communities would do their best to include us in the meantime. 

But that trust has been misplaced. 

Not once but again and again. Not only do people with disabilities encounter a lot of social exclusion, bullying and discrimination in society at large, we encounter much the same atmosphere inside social justice organizations and groups claiming to be against bigotry and hate. 

My experiences and the experiences of those I have spoken with are clear. People with disabilities are welcome in these groups primarily as mascots or symbols. We are not respected for in our fields of expertise and study. We are often silenced and rarely given a voice. 

I've been told that my voice and experience are not welcome in progressive and social justice groups on multiple occasions. Usually this was not specifically because of my disability but rather because of my race. I was told that as a white person I am privileged and my role is not to speak. As a blind person, however, given that no other people with disabilities were present or given a voice, I felt that our voice was needed. 

I have been rejected quickly from several groups when my politely phrased protestations against being silenced were regarded as going against group authority. I never used profanity or insults against others in my responses. I did not talk over others but only refused to be entirely silent.

For that reason, this inventory of the abled-privilege backpack is necessary. I welcome any additions that others may find while rummaging through it. 

Do the blind understand what the sighted see?

Being an out-outspoken visually impaired blogger and author has one annoying side effect. I get asked the darnedest questions. 

The latest one was this zinger, "How do blind people know they are blind?" Taken at face value it's ridiculous and my first inclination was to give it a flippant, humorous reply that would put the assumption that blind people are stupid in it's place. But the inquirer followed up with a bit of explanation and I saw a deeper question in the botched phrasing.

How do little blind children know they are different from sighted children? How do blind people know about what sighted people experience through sight? Those aren’t such silly questions, so I let them have it.

When I was a baby and they found out that I was almost entirely blind, my parents decided that they would act like it wasn’t true or at the very least didn’t matter. We lived on 20 acres in remote, rural mountains in Oregon. We built our own cabin, grew a lot of our own food and rode long distances to a small school on yellow buses that made it up the gravel road most of the year.

Creative Commons image by Neticola Sny

Creative Commons image by Neticola Sny

I had two rambunctious brothers and my dad was always building something. There were hand tools, boards and debris scattered all around the cabin and beyond that there were the woods and the rocky high prairie. Many days in our middle childhood, we spent the whole day outside and didn’t come back until evening. We’d eat miner’s lettuce and camus roots or sit down under a pastured cow and drink milk right out of the udder.

I don’t remember realizing that my eyes were different. It seems like it was a fact that was always there. I could see some but very little. I ran after my brothers. I was a loud, complaining child and I was always yelling, “Wait for me.” They didn’t. I learned to keep up.

I don’t know when or how but I discovered that if I picked up pebbles and threw them ahead of me, I could run faster and avoid most scrapes. There were irrigation ditches in the lower areas that my brothers would jump across and run on without slowing down. I threw my pebbles, listened for how far I had to throw before they stopped dropping into the bottom of the ditch and then I jumped too.

I was slower sometimes. But not on a bike. I could see enough to make out the basic contours of the road and our gravel road was so rarely frequented that a car came along once in a few hours. And when one did, my brothers and I would not only scramble to the side but well off of the road, skittish as the deer.

So I had a bike, just like my brothers. One brother is two years older than me and one is four years younger. My older brother once rode his bike five miles to the tiny down of Summerville, population 250. I copied him the next day, insistent that he wouldn’t outdo me.

Then a few months later, I decided I would ride ten miles to the town of Imbler which was bigger. My brother laughed. But I got up in the morning and packed water and food. That was one of the first times I remember my mother showing any concern about what I did from a safety standpoint. She wasn’t entirely thrilled with the idea but didn’t seem to forbid it. My older brother jumped up from his place by the woodpile and grabbed his bike and rode off fast. I scrambled onto my bike and followed. He wasn’t going to beat me. We eventually agreed to cross the city-limits line together.

I wore huge thick, coke-bottle-bottom glasses to slightly improve my vision. Think of it this way: without the glasses I saw about five percent of what most people see. With them it was closer to eight or ten percent. My family obviously didn’t have much money and the glasses were worth an entire month’s income.

I lost them, of course. I hated the glasses for one thing. As a toddler I threw them away willfully. Later I lost them a couple of times because i put them down. The glasses were so heavy they carved red sores into my face. But by the time I was old enough to remember, I knew I had to have them and I didn’t resent them.

Whenever my family rode in a car, they were constantly pointing out deer, hawks and eagles as we drove along the country roads. I listened from the time I was a baby and there must have come a time when I realized that they were seeing things I wasn’t. I wanted to see those things too but there was never a moment when I asked to see.

Sometimes my mom tried to describe something like that to me, but I knew what a deer and an eagle looked like. I could see them up close in picture books. Of course, what I saw even there was indistinct and lacking in detail. I just didn’t know it.

I remember one conversation in the car in particular. My mother was talking about the new leaves on a tree with my older brother. I think they were discussing whether or not the leaves were healthy. This was at some small distance. I could see only fuzzy green blobs on the sides of the road where the trees were. I imagined that my family could see those blobs better. They could see their exact shapes and maybe some branches in them, like I could in a picture book. But I stopped my mom in the middle of the conversation and demanded that she not jump to conclusions about the health of the tree unless she examined it close up.

“You can’t possibly see the individual leaves, let alone what spots are on them,” I said.

There was silence for a moment. And then she told me somewhat sternly, somewhat in awe, that in fact she could. She said she saw each leaf, individually, etched against the background, each twig, each blade of grass. I thought about that for a long time afterwards. I couldn’t imagine. It seemed like it would hurt to have to absorb that much detail. The image i tried to imagine was so sharp it was painful.

I knew about blurry and sharp because I had the glasses. When I took my glasses off the world looked blurry. When I put them on the world looked sharp and clear and brand new. I was still seeing a world that was blurred beyond recognition for sighted people. If a sighted person suddenly saw what I see even with the best correction, it is unlikely they could walk even a few steps. It would be blurry, disorienting, distorted and lacking in all depth perception.

But to me, that was the best and clearest image I could imagine. I asked my parents how things could be clearer. They said they just are and that what I saw was actually still blurry.

I didn’t entirely believe them until I was nine years old. That was the year I first tried on contact lenses. Because they were closer to my retina the contact lenses could correct my vision a little bit more. I will never forget the moment I first blinked my eyes open in a doctor’s office and looked at the opposite wall. I had been to that office countless times during my childhood. My parents may not have wanted to pay much attention to my vision impairment, but they didn’t neglect my care.

I knew that wall all too well. It was green. Or it was supposed to be green, a kind of muddy, unpleasant green. But when I blinked my eyes open with the contact lenses in I saw for the first time that the green wall was actually a much brighter green. The muddy impression I got was caused by the fact that there were thin orange and purple stripes on the wallpaper. I had always seen it as one muddy color.

In that moment, I knew my mom was telling the truth.

Therefore, if there was ever one single moment when I realized how different my vision was all at once it was probably then. I got the contact lenses and could see a tiny bit better. Again the world seemed ultra crisp to me. Only going back to my old glasses at times made me realize that what I had thought was clear before had not been.

Creative Commons image by Mike Behnken

Creative Commons image by Mike Behnken

The older I got the more I realized how much other people could see that I couldn’t. They saw the blackboard at school and every detail on it. They saw details on people’s faces that allowed them to tell instantly which person was which, even if the people were the same height and gender and had about the same kind of hair. I could never see the details of faces and had a hard time understanding how people could recognize others so quickly and easily.

Later as an adult, I read about the special, neurological functions of the human brain, in which the exact specifications of human faces are prioritized so much that sighted people can tell minute differences not only individual to individual but in the same individual, the tiniest flicker of emotions or thoughts crossing a face.

I memorize who is who by painstakingly adding up what details I can get and cataloging them, like this: short, thin lady with the bouncy blond hair who has a tinkling laugh = Jane. Sighted people remember dozens of faces in that amount of time with their facial-recognition priority function. 

This isn’t just sight, it is specially enhanced sight made possible by the adaptations of our brains. Human touch and human voices are important to the brain, but there is nothing apparently with quite the power of eye contact. Looking into another person’s eyes is, according to science, profoundly important to humans. It supports social, psychological and neurological development.

Studies have documented the huge health problems experienced by babies in institutions, who do not receive enough human contact and no single, secure bond with a special caretaker. And one of the most important treatments for these problems is eye contact.

I have never known real eye contact, not the kind that imparts all those neurological benefits. My brain had to make do with the human touch and voice inputs, which can be enough if a child does grow up in a loving family. But not having known about eye contact from an early age, I did not behave “correctly” around sighted people. I didn’t look at people while they talked when I was a teenager. I would study my hands or stare off while listening.

No one really understood this or realized the difference. They just felt that I was rude and aloof. Those words were used a lot about me, though I was anything but aloof and desperately eager to please others. It was only when specialized teachers explained eye contact to me and trained me to try to aim my eyes at their eyes and pretend to make eye contact that things improved.

The exercise in faked eye contact is still exhausting for me because my eyes move erratically and it takes a lot of effort for me to get them to hold still and try to look like I am making eye contact. But like any other social courtesy it is worth doing, to show respect to the person I am talking to and to avoid conflicts.

Now after many years of study, I have a better idea of what normal sight is probably like. I have pressed my face close to video screens and watched expressions cross the faces of actors. I probably can’t see every detail, but I can have some idea of what other people’s expressions look like. I can see distant natural features and animals that I would otherwise not know in the same way--by looking close at photographs and using a magnifying glass. It isn’t the same of course. But there isn’t much else I feel the lack of.

I have experienced some amazingly beautiful sights and scenes in my life. Once as a young adult I had the opportunity to travel alone in Nepal. I went high up in the foothills of the Himalayas to a remote mountain-top village to deliver a letter from a Nepali friend to his wife and children.

I was still very good at navigating natural environments, camping out alone and all that, given that I grew up doing it. I slept outside the cabin of my friend’s family in my sleeping bag and in the morning I went out to the edge of a massive cliff to take in the sunrise and cook a cup of hot chocolate over my tiny alcohol-tab stove.

Before dawn the whole world was silver and blue. I could make out hazy ridge lines in front of me, jagged streaks of indigo against the silver, tapering down to the rose tinted mist above the plains of India to the south. To the north there were shining white peaks against an azure sky.

Then shivering streaks of gold, peach and pink began tracing out from the east like a painter’s brush bleeding into fabric. I watched in awe as the sun, emerged onto the horizon, like a jewel rising out of viscous honey. The light from it truly seemed to pour like slow liquid. Gold, rose and peach splashed over the ridges, turning the indigo lines to flame. The valleys and canyons were still dark and the mist that curled up out of them shown with color and light.

I am sure there are many details I missed. I missed the birds soaring in the canyon below me. I missed the leaves on the vines growing on the cliffs. I missed the detailed sparkling contours of the Himalayan peaks far to the north, that I could barely make out as white shining gods.

But what I saw was no less beautiful. And combined with what I heard and felt and tasted and smelled in that little village in a time and place in history when there were still little villages built with stone and branches with no electricity and no mail service… well, I experienced plenty.

I felt the rough grain of the wood under my hands, investigated the geology of the rocks, listened as the children taught me Nepali from their tattered school notebooks, ate the meager rice and lentils of the village, spiced with both sharp hunger and whatever the mothers put in it. And I never wanted for more.

I knew that I was visually impaired the way anyone knows their basic characteristics. You know your arms and legs and hair and senses. You learn your body, particularly if you live a physical and rugged life as a child. Later the tests of doctors told me exactly how different my eyes are. That is something no one could know without science and measurement. I had the good fortune of not knowing for the first several years of my life how the world would view me as different and lesser because of this minor physical difference.

Because my parents chose not to pay much attention to it, I gained an active, healthy body and great mobility skills and I lost a lot of early understanding of the social cues I was missing. It was a blessing and a curse. My mother now often regrets not paying more attention, not realizing how different the social experience of a blind person is, the lack of recognizing faces and expressions, the lack of eye contact.

And I agree that if I had the raising of a blind child, I would talk about that. I would train them in social courtesy and try to bring those key experiences in. But I would also let that child run wild too, as much as any child gets that these days.

I would never let understanding sight or what part of it was lost become a major topic or obsession. Because it is just one thing, one piece of life experience. And the others can and do make up for it more than society believes.

Political correctness, dismantling the English language or reclaiming basic decency

Donald Trump--with the help of a few like-minded fellows--has unleashed an on-going tidal wave of racist, able-ist and sexist muck by giving bigots a socially powerful role model. This may allow us to see who has been secretly resentful of modern realities, such as black people are no longer their slaves, disabled people appear outside cages and women can vote. But I'm not even sure that qualifies as a bright side.

At the same time, it feels like many of us are doing the equivalent of using Trump's famous paper towels to clean up Puerto Rico, dabbing up droplets that somehow splashed all the way to our homes in distant states. I'm going to get some flak for this from people I really do agree with on everything that matters, but there are times "political correctness" has become ineffective, has been hijacked by people with an oppressive agenda or has become a game piece for social jockeying. 

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The term "politically incorrect" implies that the use of a word or idiom is a problem only because it is incorrect from the standpoint of politics, i.e. it wouldn't be a good idea to say that if you want to be popular. This is the reservoir that stored up all the resentment which fuels the tidal wave of openly bigoted remarks both in public and in private.

The irony is that the people who are now claiming not to be politically correct actually were the only ones being politically correct in the first place. They were refraining from saying things they truly believed in order to be socially acceptable.

By contrast, many of us were never politically correct. We didn't use the N-word because we felt it is disgusting and demeaning both to Black people and to anyone who uses it. We didn't use the R-word because it is filthy, and much more than an F-bomb, it actually does real harm to children in schools all over the English-speaking world. 

It isn't political correctness that should keep a person from using insulting, disgusting, demeaning, hate-filled and violence-inciting terms and idioms. It's basic decency. 

So let's call it what it is. When the use of indecent and bullying terms is labeled "politically incorrect," an implication is made that this isn't actually ethically wrong, just politically unpopular.

When I realized as a young person that the verb "to gyp someone" is a slur against Romani people, it was not difficult for me to remember not to use it ever again. It immediately took on such a disturbing connotation that I simply stopped, even though it was common slang used in the rural area where I grew up.

I learned some years ago about the origins of the rhyme "Eenie, Meenie, Miney, Mo"  in the slave trade and it only took reading about it once to make it very uncomfortable to me. It is not the disapproval of others that makes me cringe and redirect children in my ESL classes who start singing it, but rather my own understanding of the facts and my sense that it assaults the self-respect of anyone who knows its history. 

There is such a backlash against the concept of taking care not to harm those most often excluded with thoughtless words that it has become politically correct to insist that one is not politically correct. Put another way, political correctness is merely a term for what is believed to be widely supported.

This backlash comes, unsurprisingly, from some of the same sources as the current tidal wave of bigoted rhetoric. I recently ran across a list of mostly fake "politically correct" terms on the website of the far-right British National Party. The list was not presented as humor but rather as information to help readers avoid conflicts, and therefore implied that these terms were truly advocated in mainstream society. Mixed in with real examples of polite language, the list gave rise to many claims about how ridiculous the movement for inclusive language is. 

Among listings suggesting a person use "gay" instead of "homosexual", "sex worker" instead of "prostitute" or "homeless person" instead of "tramp," there are fictitious listings advising readers to use "ethically disoriented" instead of "dishonest" or "nasally disturbing" Instead of "smelly." The point is to manipulate far-right readers to believe an exaggerated and patently ridiculous version of inclusive language.

Unfortunately, this manipulation is made easier by some activists for social justice who don't differentiate between confusion, customary idiom and even honest ignorance on the one hand and blatantly harmful, hateful and bigoted terms on the other. If we equate a person not knowing whether another prefers the term "Black"  or "African American"  with intentionally racist slurs, we cheapen the experience of those who encounter the real deal. If we equate a deaf person being called "hearing impaired" when they prefer "deaf" with the R-word, we make it much less likely that disability activists will be taken seriously.

It is reasonable for a group to request that society refer to them by particular terms and refrain from others. Trying to comply is good manners, but not complying is the equivalent of neglecting please and thank you. It's rude if you know better, but it isn't the same as being a morally degenerate bigot.

Not everyone has equal access to information and social interaction. And groups are not homogeneous in their requests. Trying to politely use the terms a group requests is admirable and difficult. If a person uses a term we dislike but their intent is obviously not insulting or demeaning, that should be handled in a much different way than the use of intentional insults. 

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The case of "blind"

I was recently asked to personally weigh in on one of these terms on a public forum. That was, of course, about the word "blind." While most deaf people and their organizations today have been very clear that they prefer the world "deaf" and do not like the term "hearing impaired," many blind people swing the other way, saying they don't like the word "blind" and would prefer the term, "visually impaired." 

In my view, abled people can be forgiven for being confused about this. I appreciate those who try to politely use the preferred terms of whichever group they are talking to. And I beg everyone involved not to make this into either the privilege olympics or a verbal fight. I appreciate our need to define our own identities, but let's not forget the fact that thirty years ago, when I was growing up, we were all mostly just referred to with the R-word. 

I was born legally blind and I have been active in disability rights organizations and efforts since I first learned to read nearly forty years ago. I have been a vehement advocate for the integration of people with disabilities in schools and for non-discrimination in employment. 

I have also been the target of just about every insult and slur against people with disabilities that exists in at least four languages. A stronger reaction to such insults, you won't find.

We don't need to stop pushing for respect just because we've rid ourselves of the worst insults. We can and should progress to defining positive identities for ourselves. However, what we are experiencing just now across the United States and around the world is a reminder that the bulwark against hate and bigotry is a barricade that must always be guarded.

There will never come a time when we can say, "The N-word and the R-word and their ilk are dead and buried. We can now turn to more subtle exclusionary terms and bury them the same way."

That is because they are a different species. "Retard" was used as a vicious insult. Several other terms were also used to put people with disabilities in institutions, sterilize us, deny us education and kill us. Those words, like the N-word and similarly vicious racial slurs are not even in the same dictionary as "blind" and "hearing impaired," which aren't and weren't widely used as insults and which have regular definitions.  

Sometimes "blind" is used as an idiom meaning stupid and ignorant. (Examples: “That politician is just a blind idiot.” "He was blind drunk.") There is no context here meaning something related to senses, just to intellect. This tends to equate blindness with intellectual deficits. If someone is stupid or ignorant or uneducated, call them one of those words, if you must. It isn’t cool or necessary to insult people with physical or developmental disabilities by comparing bigots, the willfully ignorant or bullies to us. Even if these idioms are often unconscious, they can be harmful over the long-term and it is reasonable to ask that they be avoided.

However, I can't personally support calls for the word "blind" to be discontinued in general in favor of "visually impaired." Some partially sighted people, especially those who have not been visually impaired their whole lives, really do object to the word "blind" and if I know that about them, I will try to refrain from using it around them out of personal courtesy and respect.

But it's a word with a definition that has not been profaned by common use as an insult. When it is used with technical accuracy, it has my support. And attempts to draw an equivalence between such a term and much more grievous abuses of language are unhelpful and potentially harmful. 

That's just the opinion of one visually impaired person. Due to my very poor sight--less than ten percent of the "norm"--I'm on that line where I could be called "visually impaired" or I could be called "blind." I often use the term "legally blind" if the point of the conversation has to do with official status as a person with a disability, rather than someone who wears corrective lenses but is not disabled. 

But if someone refers to me as "that blind lady who does herbs" or something of the like, I'm not offended and I don't see any reason to correct them any more than if they had said, "that blonde lady who does herbs." Both are technical descriptions and if someone in the conversation doesn't know my name, they are simply choosing the easiest way to identify me. 

The use of a term like "blind" all depends on the context, tone and intent both when using the word according to the dictionary definition and in idioms

I don't get on anyone’s case about using expressions like, “The blind decisions of the CEO drove the company into the ground.” It’s an idiom and the focus is more on the decision being "short-sighted" or lacking in long-range information, rather than on it just being stupid or unaware. Blind people are not stupid or unaware. We do, however, often lack visual information.

In a sentence like, “the blind obedience of the cult followers is creepy,” the idiom means that the followers don’t consider anything external and act ultra focused, as if they had blinders on like horse going through a tunnel. And yes, "blinders" is another thing that is just a word. I'm not going to stop saying "blackboard" or "whiteboard" if that is the actual color of the board. And I'm not going to stop saying "blinders," "blindfold" or "blinds" on a window. These are not demeaning and don't make people subconsciously think less of any group. 

If someone loses their glasses and laughs about being “blind as a bat” or gets new glasses and moans, “I’m going blind.” I’ll probably slap them on the back and chuckle, “Don’t worry. You’re in good company," even if their glasses are really nothing to moan about. The ability to laugh at one's self is a key survival skill.

But there are situations where the tone or context is hostile. I’ve had people say “I’m going blind,” as an excuse to deny me a seat close to the presenter at a workshop, when they just wear glasses that fully compensate for their minor vision impairment. I can’t count the times someone has lashed out with, “Are you blind or something?” when I failed to recognize their face or read an instructional sign.

I'm fine with the word "blind," in appropriate idioms, in factual description and even in good humor. I am also fine with "visually impaired." I am fine with the word "disabled." I prefer terms that demystify and inform without being insulting. 

I dislike euphemisms. I do not like the term "visually challenged," except in good humor. Vision isn't that much of a challenge. I just don't have that much of it. A challenge implies that if I just tried harder, I might be able to see more. Not gonna happen.

I also don't like the term "handicapped," which comes from a racing practice in which superior horses had to carry heavier weights. I know the term was used to denote people with disabilities as a way to imply that some higher power chose better people to deal with the difficulties of disability. I find the connotation unhelpful because it implies a justification or reasoning, rather than just the factual lack of a certain sense or attribute which is the fact.

I have always felt that actual disabilities are not the primary problem we face, but social stigma, reasoning and machinations around them. Let's keep terminology to the facts and keep society's interpretations out of it as much as possible. Those who argue that their issue with society is not a "dis-ability" because they don't lack any particular ability but rather have a different way of functioning are welcome to avoid the term "disability" and I'll still advocate for their rights to be respected as simply different. 

But not all visually impaired people agree with me. Some truly prefer the softer, euphemistic terms. To me they imply that visual impairment or blindness is something too horrible to say right out or conversely a challenge that I should just overcome on my own without society adapting at all. To me it is neither. It is a lack of a specific sense. It doesn't define the whole person, any more than some other single characteristic, but it is a piece of information that matters enough to be mentioned.

It is my hope that those asking for inclusive language changes can be kind, tolerant and inclusive when asking for them and not assume those who don't know mean harm. I also hope that time will change our language to be more inclusive and technically correct, rather than euphemistic.

We don't need to soften facts. We need to open-minds to the reality that those facts are not a curse.