Mismatch: A crucial concept of civilization and disability

I’ve read four books over the past two years which have radically transformed my understanding of the human world. I highly recommend all of these to readers who may feel disjointed, hopeless, surreal, useless, bemused and/or displaced by current events and daily survival in our modern society. These books won’t make all your troubles go away, but they do help make sense of them.

This is the reading list—all both pleasant and absorbing reads, impeccably written:

• Civilized to Death: The Price of Progress by Christopher Ryan

• Sapiens: A Brief History of Humankind by Yuval Noah Harari, Derek Perkins, et al.

• Cassandra Speaks: When Women Are the Storytellers, the Human Story Changes by Elizabeth Lesser, Xe Sands, et al.

• Braiding Sweetgrass: Indigenous Wisdom, Scientific Knowledge and the Teachings of Plants by Robin Wall Kimmerer

Each of those books is utterly transformative in its own right, and there are far too many interesting points to cover in a single blog post, but there is one overall impression I have taken from this study of human nature and our relationship to both civilization and the natural environment. That is that virtually all humans today are “disabled” in the social-model definition of the term because we are living in a maladapted environment that does not support our physical and psychological needs as human organisms.

Image via pixabay - people walking through an airport

For those who are just waking up today, the social model of disability is the concept that disability is not a problem with the individual person but rather a mismatch between an attribute of a person and their human-designed environment.

Thus, a person with a wheelchair is “disabled” primarily because of stairs. In a society without stairs, using a wheelchair would likely be considered a quirk or at most a private health matter. A person with ADHD is “disabled” because of our society’s obsession with tasks that require sitting still and focusing one’s attention on random, functionally irrelevant things for long periods of time. In a hunter-gather society, ADHD may have actually provided advantages in the type of alertness needed to procure food, which is one theory about why it is so prevalent and so much more problematic today than it was decades ago. The further we get from a nature-centered lifestyle, the more society conflicts with ADHD brains.

Similarly, I am “disabled” because I can’t drive or make eye contact, while I am living in a society where driving is central to procuring food, shelter and all the other basic human needs and making eye contact is one of the foundations of social interaction. If I lived in a society. where everyone lived in dimly lit subterranean tunnels with either no transportation or collective transportation and making eye contact was culturally frowned upon, my vision impairment would likely be considered no more than a minor nuisance. And I might be sought after for jobs where no light was available.

Even today, if the electricity goes out at night and the house is completely dark, sighted people fumble around and become suddenly “disabled” by this environmental shift, unable to even walk safely across the floor without bumps to heads or shins. Meanwhile, I walk calmly into the kitchen, easily navigating around the chairs with a hand out the same way I always do, open the junk drawer and reach for the flashlights which I am used to finding by touch.

If read through the lens of this social model of disability, my book list shows that most humans are impacted negatively by the human-built societal structures of today in ways that are significantly disabling. Unfortunately, many of these problems impact people traditionally considered disabled even more heavily than the average person. I am not, therefore, arguing that “we are all disabled” and thus people with disabilities aren’t disadvantaged. Unlike the lights going out, this societal maladaptation does not confer any ironic temporary advantage on me. But I would like to introduce abled people to the idea of looking at their human-built environment from the perspective of its maladaptations which are causing widespread and preventable illness, disability and harm.

Just as I—as a visually impaired person in a sighted society—can find workarounds, obtain adaptive technology or change my environment to better suit my body’s specific needs due to my vision impairment, I am doing the same when it comes to my needs as a human organism—as best I can—in a society that is wildly maladapted for human organisms in general.

In the list, I put Civilized to Death first because that book comes the closest to stating the disabling nature of modern society outright, although the author doesn’t have a grounding in the social model of disability, so he missed this as a further application of his research.

What Christopher Ryan does say in Civilized to Death—and the other authors reiterate—is that human beings are sadly mismatched to the modern environment. Ryan uses the analogy of different types of zoos—some where animals are kept in depressing concrete cages versus those where animals live in a simulated wild environment. He makes the case that modern cities are to humans much like the concrete cages are to animals in zoos. They present unhealthy, stifling environments for humans who suffer physiologically and psychologically as a result.

Through several chapters packed with examples, Ryan demonstrates that modern humans are suffering from deep frustration and significant unnecessary health problems because of our built environment and our societal structures. From artificially enforced sleep patterns to the modern grain-rich diet that we did not evolve for, from bacteriological and toxin exposure that is making us far sicker than our hunter-gatherer ancestors to social structures that are psychologically toxic and oppressive, Ryan shows that modern society is disabling, sickening and killing most humans in ways that early human societies did not.

To clarify, as Ryan does at more length in the book, the reason that hunter-gatherers are reported to have had a lifespan of only about 35 years is because of statistical averages. The combination of a lack of surgeries and NICU incubators and the physically demanding environment meant that infant mortality was very high. Half the population died in infancy or early childhood, despite the relative lack of either infectious or systemic disease in their societies, while the other half of the population often lived to be 70, 80 or even older, often with much better health and a happier, more enjoyable life than the vast majority of us enjoy today. Hunter-gatherers spent far fewer hours procuring the bare necessities of survival and had more time for leisure and their families and friends.

IMAGE BY ALEX NAANIOU - BARE FEET WALKING ON A GREEN FLOOR AMID SHADOWS

Human beings as biological organisms are not well adapted to a stifling built environment, the modern diet, heavy work schedules or social structures involving more than about 150 people. Some human bodies have adapted to the modern diet better than others. But as that diet becomes more and more alien, more and more humans are being sickened by diabetes, heart disease, allergies, food sensitivities and immune disorders. This isn’t because there is “something wrong with these bodies.” It is because of a food environment that is ill-suited to those functional, otherwise-healthy bodies.

Similarly, many of our bodies and brains are breaking down or reacting poorly to the stress of 40- or 50-hour work weeks with another 20-30 hours of household and caregiving tasks piled on top. How many people with diagnoses of ADHD, clinical depression or anxiety disorders would have these disabilities or need medication for them, if they lived in a natural environment where procuring the necessities of life consumed only 25-30 hours per week? Not many, Ryan convincingly argues. Because humans lived with that level of ease for the vast majority of human history, this stress and its effects qualify as a socially constructed disability.

Most people don’t see these effects as “disability” because we all experience them, so the resulting general distress is “normal” and more severe effects in some individuals are seen as individual weakness, or weirdly, individual moral failings.

As I said at the beginning of this post, reading these books and realizing that much off what is wrong in today’s world is due to a mismatch between our human bodies and modern society will not fix these problems. Much of what is wrong can’t be fixed by individuals and some of it couldn’t be fixed, even if we could all agree and work together on it. Overpopulation is the worst of it. For us to live in a well-adapted environment, where our bodies could regain the physical health and general happiness that our hunter-gatherer ancestors enjoyed, the earth could only sustain a small fraction of today’s human population.

However, there are some things that you can do as an individual to adapt your environment for better health and happiness. Just as I, as a visually impaired person, can use various methods and technologies to make sighted society somewhat less problematic for me, I have also learned to change my environment to better suit my overall human body. I have stopped eating a typical modern diet and try to approximate the type of diet my ancestors would have eaten. This has resulted in an amazing resurgence of my health over the past two years.

I have also integrated more varied physical activity in natural environments into my routines. I utilize my brain’s natural propensity to want to remember and categorize plants as a brain boosting activity. I have stopped berating myself when I don’t work a 40-hour week at a traditional job and instead look at all the various methods I use to sustain my life as a form of modern hunting and gathering. That goes along with finding joy and meaning in things that do not require a lot of accumulation of wealth.

There are many things we can do in groups of family and friends as well. Realizing that we are hard-wired to connect in small groups, primarily in close circles of around 10 to 20 individuals, is a big help in understanding our various social problems. With modern technology today, we can in fact create a small clan of close connections and a larger circle of around 100 to 150 people who we connect with for reciprocity and the sharing of information. In such groups, we can develop mutually supportive relationships. If parenting is taken as a group effort—as it was for most of human history—for instance, rather than a task for the biological mother and father alone, a wide variety of current social problems are considerably alleviated.

There is no way to create a utopian society in which we return to an environment ideally adapted to our human bodies. Again, overpopulation precludes it. Also, our bodies are not physically prepared and our minds are full of the skills and information needed to survive in our current society and almost universally lack the information and skills needed to survive in a natural environment, even if one was available. But we can gain benefits by learning as much as we can about the natural environment and spending what time we can in it.

We can—just as people with other types of disabilities do—find work arounds, assistive technologies and possible environmental changes that will help and make life a lot healthier and more enjoyable.

Much of this insight has come through studying the social model of disability and through reading and rereading the books I listed by authors who are looking for a path forward for modern humans. What are the books—fiction or non-fiction—that have most inspired you recently? I would love to get a short list in the comments.

Taking action: With and without empowerment

I’m going to level with you. The last couple of years have been really, really tough. Even if you aren’t very close to me personally, you’ve probably noticed, if you somehow managed to keep reading my blog.

I will say this for myself. I kept posting. But it was rough and I know a lot of my posts have been less than uplifting recently. That’s how it goes when life is throwing heavy crap at you and you’re the honest type.

a hand reaching for an illusive light - Creative commons image by gabriel rojas hruska

But I now have the possibility to come back to writing more than just a blog. And for me that means light is coming back into my life. I can’t guarantee it will stay. My newly stabilized situation is held together by metaphorical spit and duct-tape, but I’ll take any chance I can get.

In fact, I have already resurrected one of my old book-length writing projects, blown the cyber dust off of it and sent it out to a couple of beta readers.

Yikes! That was invigorating! (Along the lines of how jumping into an icy winter lake is invigorating.)

I didn’t previously know either of these beta readers and I got a lot of hot and heavy criticism, which I fully appreciate and intend to use for improvement. My friends are often too nice about this kind of thing.

Friends, I do understand. Not only is it easier to critique a stranger—who you are unlikely to have to comfort through the resulting existential writer’s depression—but most of my friends also share a good deal of my background and worldview. In short, we have a lot of the same assumptions and even prejudices.

The story in question is a memoir about how I got into international journalism as a 20-something and lived and worked in more than 30 countries. And it necessarily (from my perspective) starts with the fact that I grew up in a shack that lacked an indoor toilet in rural eastern Oregon.

I mean, this is essential character development for the rest of the story, isn’t it? If I had been an adventurous young person from a wealthy, back-east family of intellectuals with connections to the newspaper business and high society, the basic events might have been marginally similar, but the story would have been utterly different.

And for that very reason, it appears that I have a great deal of trouble describing my background in a way that is both palatable and believable to people of the middle-to-upper class American persuasion. My critique partners both found these sections baffling and unsatisfying, despite the fact that I actually thought I was being “funny” with self-deprecating humor.

The most basic example from one of the beta readers came in the section where I described meeting a group of American exchange students bound for Germany. We were all around sixteen years of age and all Americans and all white. But my difference in background was obvious.

They were all from wealthy families and from big cities. Their luggage matched. Their clothes matched. They all shared social norms and communication styles that I didn’t. They were also all sighted and I couldn’t see their faces.

But these are not differences our society emphasizes. The exchange agency, my fellow students and my beta readers were all bewildered as to why I didn’t fit in.

When I described the confused and cold reactions of the other students to my presence in the group, one beta reader kept text-yelling “But what was YOUR behavior that led to this?!?” Surely, I had to have been behaving oddly to be excluded by this group of nice, upwardly mobile young people.

And I have to hand it to that beta reader for brutal honesty and attention to detail. From my perspective then as well as while writing thirty years on, I did not see anything remarkable about my behavior. But on closer inspection there was.

I didn’t make eye contact. It is physically impossible for me. I didn’t smile hesitantly when others made eye contact. I didn’t give a little smile of recognition to the person who sat next to me at lunch when we later met in passing. When another student went out of her way to hand me a hard-to-reach book, I thanked her, but I didn’t respond to her with the extra warmth that context would imply when I met her later, BECAUSE I couldn’t see her face and thus didn’t recognize her.

And those are just a few of the vision impairment related “behaviors” I no doubt displayed. Honestly, I was stung by the beta reader’s insistent comments that the issue had to be my behavior. On first reading the comments, I felt sure this was unjust.

I had been kind and friendly to my fellow students. I had greeted them cheerily and continued to do so, even as their attitude toward me soured. I had passed books to others. I had helped a fellow student pick up her things when her hands were full and her purse spilled. I went out of my way to try to ask them about themselves and respond with acceptance and positivity. Shouldn’t that be enough?

Maybe it should. But that is irrelevant to a beta reader. A beta reader looks for the believability and relatability in a text narrative. She does not represent some ideal of justice and fairness. She represents a regular reader who doesn’t know about vision impairments and who also happened to come from a background much more similar to that of those other students than to mine. My perspective is foreign and incomprehensible to her without a great deal of context.

If I want readers like her to be able to believe and empathize with me as a sixteen-year-old trying to win acceptance among a group of exchange students from wealthy and privileged backgrounds, I really do have to show how my behavior was different. I would have to break it down with a lot of words and description.

I’m not necessarily saying I will do that when I edit my story. But I am taking it into account as a factor in how some readers will be able to understand my story on a deep, empathetic level. I may choose to sacrifice some of that for the sake of brevity, but thanks to that beta reader, I’ll do so consciously, rather than obliviously.

This beta reader also expressed that I “should have taken action” to improve my situation at the time. And here context comes up again. How exactly could the visually impaired and socially underrepresented student in this story take action to become less excluded?

I couldn’t magically see other people’s faces. I didn’t even realize at the time that that was a big part of my social problems, so I couldn’t explain it to them in hopes that they’d be understanding. Likewise, I couldn’t magically gain knowledge about the social norms of urban elites. I was also largely unconscious of those issues, as were my fellow students.

Thinking about this has led me to an understanding of how empowerment or lack there of affects an individual’s ability to “take action.”

My second beta reader wondered why I didn’t “take action” to get into the newspaper industry more effectively later in the story. I was doing literally everything in “the book.” The book is Writer’s Market, an annual listing of how and to whom writers can market their work. It’s the outsider’s guide to getting into the publishing and print media industries. Everything an outsider can do—from query letters to conference stalking and from agent hunting to exposure swapping—is in that book. And I did all that.

What I didn’t do was the Hollywood type things. I didn’t get a job as a waitress at the place where a top newspaper editor eats lunch and then strike up a friendship with him. I also didn’t do the realistic things that most people in the business did to get in the door. I didn’t call up my uncle or my uncle’s friend in the business and get an entry level job, because I didn’t have any relatives or friends in the business.

Empowerment makes for action. If you have the basic materials or conditions, action isn’t inevitable but it is feasible. In other words, you still have to work for success, even when you’re privileged, but taking action follows empowerment.

We don’t always realize how empowered we are, of course. Much of my life in rural eastern Oregon today revolves around trying to get rides or set up rides for my kids. After years living in a country with a dense public transportation system, I find this limiting and frustrating. Not being able to drive is a much bigger deal here, and other than the online world, most actions I might want to take to improve my own life or that of my children require transportation in a vehicle.

And yet, I sometimes do find ways around it. I find ways to work with medical transportation services. I network. I offer what I have in exchange.

To modify a phrase, knowledge is often empowerment. Had I known more about social class and vision when I was sixteen, it is possible that I could have navigated groups of teenagers better. Certainly, if I had known the right people or even just the internal structures of newspapers, when I was trying to get into the newspaper business, that would have been a lot easier.

But knowledge still isn’t the same thing as just being in an empowered position. I wouldn’t have needed that knowledge, if I had been part of the in-group already. And I now wouldn’t need detailed knowledge of every type of transportation system, if I could access transportation in the societally supported way—i.e. by driving.

When you look at your own or another person’s situation in terms of whether or not they take action at the right moment, these are key considerations. Are they empowered to take action by the situation, their own limitations or the society they are in? Are they informed?

We often can’t fix these things, but being aware means that we are moving through life consciously, rather than being oblivious.

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.

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That isn’t on me. It isn’t on us.

Short story: Stars for Stacy

I ask you to imagine a slightly different world. Not so different really.

Remember that ninety percent of human communication does not involve words, spoken or written. It is about tone of voice, facial expressions, body language and eye contact. We say a great many things without words, often even without realizing it. It isn’t an extra. It is the mainline of communication, the mainstream.

But in the world of this story, things are a bit different. Here ninety percent of human communication is telepathic. That’s all. People still speak and have facial expressions but perhaps they have developed to speak a bit less than we do. And the important communications—the things that truly matter—are passed directly from mind to mind.

In all other ways, this world is the same as ours. And as such, human bodies are fallible and changeable and diverse. The same diseases and injuries that affect us still exist in this telepathic world. Maybe it is a little less important if a person is blind or deaf because communication can go directly from mind to mind. Such disabilities still exist, but they become little more than a nuisance, like colorblindness or lack of the sense of smell is for people in our world.

The disease that people fear in this world, the dreaded debilitation that strikes some unlucky children, people with head injuries and the very old is called “mind blindness.” People donate teddy bears to mind-blind children, pity their parents and try not to think too hard about it.

These disabled people cannot communicate telepathically. Either fully or partially they cannot perceive or send such communication. And in a world of telepaths, this is a terrible condition.

But progress comes eventually. With technology and modernity there are steps toward acceptance. Those who were once kept hidden away in institutions are integrated… somewhat. Good-hearted people want to include and help them. The parents in the small town of Marten are even glad when the school integrates a smart mind-blind girl into a mainstream classroom.

Creative Commons image by Eric Wüstenhagen

Her name is Stacy. Stacy has wildly curly hair, a big smile and strangely disconnected-looking eyes. She doesn’t look at you when you greet her. You have to speak out loud. You have to be almost rudely explicit about everything with her. It takes extra effort and at first the teacher is reluctant to have this extra burden in her class.

But Stacy has a blocky little computer on her desk, something developed to be functional rather than handsome, to help the unfortunate who chronically have very little money. The computer roughly translates the stream of the teacher’s thoughts into words. It’s one big run-on sentence that often makes little sense. All the nuance and feeling is taken out, but she can basically understand what the teacher is trying to get across in class.

Stacy can’t perceive the comments and questions of other students with it though. The teacher wears a special receiver. It is so much better than nothing. Stacy is so happy to have it. Up until last year she was almost entirely cut off from the telepathic world and she had to go to a special school where slow-speaking teachers taught out loud and while everything was cheery, there was an underlying assumption that these children would always be disabled. The best they could hope for was “independent living skills.”

And Stacy is bright. Her teachers saw that and many people believe that with the right conditions and accommodations, she could achieve anything she sets her mind too. She is an excellent student after all, when the content is something she can hear or read.

Stacy has a special teacher too for after school. This special teacher tries to teach her coping skills, ways to get around her mind-blindness. She teachers Stacy how to read signs and cues from the bodies of others. She teaches Stacy to be extra kind and helpful to others, so that they will know that her mind-silence is not meant to be dismissive and cold, as it generally appears to others. Stacy works hard and earns stars on a chart for each milestone.

Because she’s a smiler and she tries so hard to please, some of the kids in her class invite her to go out with them. At first, it’s a thrill. They have the strange girl with them. They are curious about communication through words and gestures. Some kids like the feeling of approval from adults who are glad to see them include the disabled girl.

But it does take extra effort. And the kids find that the novelty wears off. After a while the effort of including her in communication gets old. Most stop inviting her. Sure, she smiles. Maybe a little too much, in fact. You have to say things so explicitly. She almost never gets the jokes. They don’t mean to be mean but…

There are a few who fiercely continue to invite Stacy along on group outings. She can dance so well. It’s almost as if she is saying something with the way she moves her body. But the truth is that when they have to choose a best friend to go on vacation with or someone to do a big school project with, it isn’t Stacy. She’s a friend, but not a best friend.

Sometimes Stacy does find a best friend, someone who she connects with. These are often troubled kids, teens who have been through abuse or who are shunned by the others. They don’t really want to share their every thought. They appreciate that she isn’t nosy and her out-loud chatter is a welcome distraction. But having friends who are outcasts has its own consequences.

When Stacy graduates from high school, she gets scholarships. She is still a very good student. With accommodations, she learns quickly and gobbles up knowledge. She is full of hope in those years and people point her out to their acquaintances as an “inspiration.”

“Don’t complain,” their thoughts flit from one to another as she walks by. “Think how hard it must be. If she can do it, you certainly can. She’s so brave!”

But when her fellow students have to choose partners, they still don’t choose her. Brave is one thing. The amount of work it would take to do the project with her is another.

When college is done they also don’t hire her in their companies. Brave is one thing. But every business needs networking and the human touch. She isn’t much good at interpersonal communication in this world.

Stacy wants to be a scientist and her research papers in graduate school were ground-breaking. But after she gets her degree, she can’t get a job in science. You have to meet people at conferences. And initial meetings are all about subtle telepathy. Stacy’s smile and outstretched hand ready to shake are clumsy and… well… just off.

A few of her professors, deeply impressed by her scientific work, make introductions. And that seems to work for awhile. Stacy gets a prestigious internship and finally an entry level job in her field. The sky seems like the limit and Stacy believes she can do it. She doesn’t mind that it is harder for her. She is focused on the positivity instilled in her by all those little stars she earned.

But staff reviews aren’t great even in the beginning and they go down hill. “She doesn’t greet colleagues… She is cold and aloof... She isn’t interested in working with others…” The same phrases come up a lot. Stacy remembers her special teacher and she goes out of her way to be helpful and kind to others. Some start to call her “cloying.”

She loses her job over misunderstandings and it has been a few years since she was in grad school. The old connections are lost and new ones come very hard, when she can’t do the networking circuit. She gets a few gigs doing science writing. They don’t pay much and slowly she becomes obsolete in the field. Failure stings.

She knows she was given all the opportunities, more in fact than others. She was given scholarships, special teachers and second chances. Her teachers were right. She just didn’t learn their lessens well enough.

She rents a place out of town, away from other people. It is easier if people aren’t around all the time. It takes so much energy to explain at every turn why she doesn’t do telepathy. It is exhausting to go through the social strategies she has learned to smooth it over. She turns to art made with natural materials that she gives to an old lady to sell at local fairs. This and her Social Security disability check makes a bare income.

Her art is beautiful and sometimes makes people go misty eyed. No one really points her out as an inspiration anymore though. Her smile has faded and she usually looks glum. She also talks to plants and her several cats.

Her brother and sister come to visit her with their families on occasion, but their spouses don’t really understand about her. They see her as eccentric, old before her time and not a very positive example for their children. They sit around her table as she stays mostly in the kitchen preparing food.

She loves the moment of attention and social connection she gets when she brings the food out. They’ll ooh and aah and make an effort to speak out loud for a moment. And that sends her scurrying back to make them more food. But no one thinks of her much beyond that.

One evening during such a visit, Stacy is tired from a long afternoon of cooking and she sits down at the side of the table, her fingers caressing the smooth wood of the old family dinner table. She half-listens to the conversation, the parts of it that are audible and she watches faces for the clues about what is going on under the surface.

Her sister-in-law’s face flickers and she breaks into a smile. Everyone all around the table laughs, except Stacy. She doesn’t know what the joke is as usual.

Usually, she just lets it go but sometimes she asks. And now the atmosphere seems relaxed enough, so she ventures timidly. They don’t hear her at first. The conversation is going on at the other end of the table, fast back and forth. When they do finally hear Stacy, it is jarring.

She’s interrupting. She has no sense for proper interjecting. She’s just so rude. That’s what most of them think. The way Stacy butts in shows how she isn’t even paying attention and then she wants them to pay attention to her.

Her sister who is closest to her in age does understand a bit. She knows Stacy tries and that she’s a lot more sensitive and kind than people think. She stops the raucous conversation and asks Stacy what she wanted. Stacy carefully explains.

They have to backtrack in the conversation. Her brother tries to explain the joke with words. It was a non-verbal thing though. It isn’t easy. His wife and his brother-in-law are clearly bored.

Stacy thanks them and smiles. Then she ventures to ask, “Could you speak out loud a bit more tonight.. I feel like I’ve hardly seen you this visit.”

The irritated sister-in-law turns to the others and projects the sentiment that Stacy is a bore and not very much fun. To Stacy she says, “Dear, you really should try some of these positive thinking affirmations. You know, if you could just be more like that famous actor who is mind-blind. You know. He is so gracious and such an inspiration.”

This isn’t the first time, Stacy has heard this. In fact, she’s heard this many thousands of times. And this isn’t the first exhausting conversation she has sat on the edge of while being thought to be pushy and demanding.

This probably isn’t the time when Stacy makes an outburst or cries or yells or demands to be treated like an equal. That only happens once in about a thousand similar situations. And Stacy feels guilty for those outbursts. She knows mind-blind people from her old special school for the disabled who never make a demand or an outburst. They sit quietly in their family home and make handicrafts. They make no demands. No one says they're an inspiration but neither do they blame them.

When her family goes back to their homes and leaves Stacy alone again, she is relieved. She doesn’t really like to be alone, but the truth is that it is easier than the constant struggle. And anything is preferable to those comments that tear her up inside.

Very few people in Stacy’s world ever think about a world like ours, a world where everyone is like Stacy. And if they do think it, it is just idle curiosity. What would it be like, if no one used telepathy, if all we had were five senses?

The truth is that Stacy’s world is not so far away. The sense Stacy lacks that everyone else has is no different from hearing or sight. It is one thing. She gets around without it just fine. She can do schoolwork, science, cook, be a full person in every way. She can be a great friend too. But because society is not made for people like her, her career fails and she ends up isolated.

I know dozens of Stacies all over the world. They just happen to be bright and competent and awesome and physically blind. And we live in the world we live in and most of human communication is visual. Blindness is the condition people subconsciously dread in our world. But they dread it for the wrong reasons. Physically not seeing things is a nuisance, for sure. But that’s not what leads to the isolation and despair.

Inclusion takes effort and the fact is that most people just don’t want to think too much about it.

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

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.

Who's racist or ableist: the Implicit Association Test

When you aren’t on a deadline or scrambling to get done the essentials (but your brain is too tired to either pursue your serious interests or get you moving toward something truly restful), there is something you do at your computer in that state of numb fog.

It might be browsing through pictures of cute animals on Facebook or playing Tetris or Solitaire. It might not always be the same time waster, but chances are you have certain habits. I wonder if those habits say something interesting about your personality.

My numb-fog habit is browsing through sociological and psychological statistics. If one’s numb-fog habit does say something about one’s personality, I am pretty sure mine says I’m a hopelessly weird variety of nerd. But there you have it.

Creative Commons image by Whisperer in the Shaddows photostream

Sociology and psychology statistics are like mental candy. I know that they don’t always mean what they appear to mean and they aren’t always good for me. But they strip things down to outlines and make the world appear much more orderly and predictable than it actually is, even if its predictability is in how absolutely nuts and irrational most people are.

This is why I’m the type of person who takes the Myers-Briggs personality test for fun and tries to get my friends and family to take it too. And yes, I got a very weird (or at least statistically uncommon) result on that test.

On one of the rare days when my kids were away and I didn’t have to work during the winter break, I indulged in my numb-fog hobby instead of either sleeping (which would have been the responsible choice) or doing something fulfilling or useful. And what I found was an intriguing online study out of Harvard called the Implicit Association Test.

It’s actually a series of mini tests that cover everything from your subconscious preference for light skin or dark skin to your preference for randomly selected previous presidents versus Trump and from your positive feelings toward straight people versus gay people to the degree to which you subconsciously view Native Americans as “American” or “foreign.”

If you’re curious, I turned out to slightly prefer African Americans over white people, have no preference on gay versus straight, harbor a moderately strong assumption of Native Americans as more American than white Americans and (weirdly) I subconsciously slightly preferred Trump to Richard Nixon.

Needless to say, my results on these tests tend to be on the minority side, with the exception of my subconscious lack of interest in the difference between gay versus straight people, which appears to be fairly common.

The results of these tests can be surprising, both on the individual level and when taken as an overall statistic. I went into the race test knowing that the vast majority of respondents present a subconscious bias against African Americans, including more than half of African Americans themselves who subconsciously prefer white people over people who look like them.

The test goes so fast that you can’t really try to control it or even remember much of it, but there was one of the black faces with big, beautiful eyes that looked kind of like one of my friend’s kids, and maybe that’s what tipped the balance for me subconsciously. I’ll never know because the test doesn’t explain why we have subconscious associations, it just ruthlessly alerts us to them.

Many people find that even though they state vehemently anti-racist views and truly believe they are “color blind,” they still have implicit, subconscious biases, even against their own group. This study is proof that we don’t live in “a post-racial world.”

It is one thing to fight discrimination and prejudice through equality laws, but what do you do when the people perpetuating problems of inequity and prejudice don’t even know it or condone it? It’s tough, but there are people whose test results come back without bias or with a bias in favor of those who have been historically marginalized, like mine did.

In addition, though society makes much of sexual preference as a scandalous personal detail, most people actually don’t much care about other people’s bedroom activities, according to the Harvard test results. So there must be some way to mitigate prejudice.

I am pretty certain that, if I had taken this test twenty years ago, the results would have been different. I remember how, as a college kid coming from rural, eastern Oregon, I was nervous whenever I saw a black person coming toward me on the sidewalk.

I had nothing “against” black people. And in fact, I couldn’t understand why they had faced discrimination “years ago.” I didn’t really know any black people, except for my mom’s college friend who died of cancer when I was a child, but I did secretly wonder if the continued ruckus over “race” wasn’t just coming from a few who wanted to “feel special.”

I report this all with a bit of shame, but I think honesty helps. This was my view around 1995. As hilarious as it may sound now, I thought that we were completely “over it” back then. And had I taken the Implicit Association Test on race at that time, I am sure I would have had implicit bias against black people, though I would have consciously believed I was unbiased.

What changed? Both life experience and conscious focus.

First, I spent four months in Zimbabwe as a student, almost always the only white person in a room or on a street. Even though most people were wonderfully kind to me, I learned what it is like to be a highly visible racial minority in a country with hot political and racial tensions. I then spent several years covering racial and interethnic conflict as a journalist, mucking around in every type of divide from South America to Eastern Europe.

Finally, I adopted children who are not white and we live in a country where racial boundaries and prejudices are deeply intrenched. When my children were little, I started to experience first hand how race is truly viewed in majority-white societies. And I started reading copious amounts both on race theoretically and from Black, African, Native American and Asian authors. I chose racially diverse reading and dolls for my children and spent hours to find them, not to mention several times the amount of money necessary to buy “white race” toys.

It has taken years, but now I have very different views than I did as a young student. Not only do I know very well that our society is far from a post-racial world and I am hyper-aware of things like police brutality toward black people in America, I also have gained enormous gratitude and respect for the persistence, courage and patience that so many people of color have given our society throughout history.

That last is what I think made my test result skew in favor of black faces. After two decades of focusing on the positive contributions and articulate stories of people of color, my subconscious attitude has shifted. It is that also which causes so many African Americans to harbor more negative views of black faces.

Most people in our society are not immersed in stories, media and images that present people of color positively. In school or in the mainstream media, one cannot help but absorb mostly negative images of people of color and mostly positive images of white people. But I do not consume much mainstream media and it has been a long time since I was in school.

After all that, of course I was curious about what the test would say about attitudes toward people with disabilities. Popular assumptions would tell us that most people do not really dislike people with disabilities but possibly pity them or objectify them. Despite the occasional discrimination and harassment I’ve encountered which was clearly due to my disability, I thought surely actual hatred was reserved for people of some marginalized racial group or non-standard sexual orientation. I assumed, before seeing the results, that most of my difficulty with inclusion in social groups has to do with my physical inability to make eye contact and read non-verbal cues.

Here again, the results upset my assumptions and those of wider society as well.

I wondered if I would personally have a slight bias against people with disabilities myself. I have a rugged, self-sufficiency streak and people with disabilities often do better in a more collaborative and mutually supportive community. Even I do, though I might wish otherwise. So, I was prepared for the test to tell me I am just as “self-hating” as all the anti-black African Americans.

But that isn’t what happened. I turned out to have a slight implicit positive bias in favor of people with disabilities or at least in favor symbols associated with them.

Only 9 percent of people who took the test share that implicit bias in favor of people with disabilities, while a whopping 78 percent associate people with disabilities with negative thoughts, including roughly half of that number who have strong negative associations with disabled people.

That left me gaping and shocked. The negative bias against people with disabilities outstripped racial or homophobic bias. The words associated with people with disabilities on the negative side were things like “selfish”, “dishonest”, “hate”, “anger,” “despair” and “disgust”. It wasn’t even primarily about pity.

Those results are deeply disturbing to me and my afternoon of casual browsing through statistics turned sour.

To be strictly accurate, let me emphasize that these were the views of nearly 80 percent of the people who happened to take the Harvard Implicit Association test, which is mostly something people run across online or are assigned to do for a class. That isn’t really very comforting, however.

It is likely that if the demographic of the test takers is weighted in some way it is skewed toward more educated and connected people. And these are the people who have such overwhelmingly negative implicit associations when shown images and symbols associated with disabled people. This wasn’t measuring a sample of mostly uneducated or isolated people.

It is particularly concerning given that people with disabilities are usually the last group added or are completely left off of those ubiquitous lists of people we should include and center in progressive circles. I always figured that people with disabilities got left off of such lists or added as an afterthought because people thought we were generally viewed positively and there wasn’t much need to emphasize non-discrimination against people with disabilities.

Now that dismissal takes on a different connotation. People with disabilities are often left out even in diversity culture and when they are added in, it is as a prop, never as a voice. At this point I’m still reeling from seeing these results and I don’t have any idea why there are such negative stereotypes about people with disabilities.

But my own experience with overcoming racist biases makes me think that what we need is a significant, pervasive promotion of the voices, images and stories from people with disabilities with an emphasis on our altruism, unselfish contributions, intelligence, helpfulness, capabilities, honesty and dignity. Without such promotion throughout society, I doubt these attitudes will change.