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.

Still dressed up: Greeting unknown humans with stubborn positivity

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Do people who are bullied really turn into bullies?

There is a vicious, traumatizing and stigmatizing rumor going around about my son and kids like him on social media and even in the mainstream media.

I have run across the remarks and assumptions at least ten times in just the past two days, and I wasn’t looking for them or even aware that such a stereotype existed until very recently. This vicious, hateful and potentially deadly myth has it that people who were bullied as kids become bullies, anti-social adults and/or violent criminals.

A few real-life examples do exist and psychologists call them “bully-victims,” but they are far less common than the popular stereotype assumes.

Creative Commons image by Carolyn Langton

I have recently rejoined the world of social media after a nine-month hiatus prompted partly by a serious incident of online bullying (yes, it happens with adults too) and partly by the exhaustion of homeschooling kids with special needs during successive Covid lockdowns.

And this is what I found on my return. This vicious rumor against people like my son and like me, a stereotype painting people who were bullied as potentially violent and liable to lack empathy. It’s a myth often spread even by those who previously claimed to be allies.

Maybe the myth started with an incident or incidents of violence in which the gun lobby decided to make excuses about how the shooter was once called “wimpy face” as a child and thus the quick and easy availability of semi-automatic weapons had nothing to do with it. Or maybe it was just a way of blowing off steam about empathy-impaired people during the U.S. election. Either way, it is now a pervasive stereotype.

The comments are things like an acquaintance on Facebook posting under a story about a violent police officer, “No excuse for it! He was probably bullied as a kid and this is how he takes it out on others.” Someone else referring to white supremacists as “a$$holes who were bullied in high school." And a passing reference on the television news about the need for bullying intervention to prevent “victims” from becoming mass shooters.

The overall assumption is that a direct link exists between being a target of bullying and future perpetration of violence or cruelty. And that assumption is everywhere these days to the extent that admitting you were bullied as a kid is now more likely to result in distrustful glances than support and empathy.

My first reaction was hurt and irritation, when I heard about this myth. I was a target of bullying and social ostracism as a kid because of my vision impairment, my strange-looking eyes, my secondhand clothes and my family’s alternative spirituality and lifestyle. I had a lot of strikes against me. My son just has being a member of a locally high-profile racial minority, the only non-passing representative of such in his school. But that is plenty to get a kid knocked down and chanted at by groups of bullies.

I have overcome a lot of my past, but it is still hard to see my son going through it for something equally beyond his control. And now he’s saddled with yet one more stigma. Not only is he “a young brown male” and an ESL learner, he is now categorized as a potential perpetrator of violence and cruelty in the popular imagination because of something that was done TO him.

He’s ten and he’s at the tender and naturally open age where he reminds me to include our two cats when I tell someone how many “people” are in our family. Empathy isn’t something he’s lacking.

So, the comments hurt. But then my rational brain kicks in. OK, but maybe there is some significant statistical correlation between being a target and becoming a perpetrator. I sure have had enough rage at times to be able to relate. Maybe I shouldn’t be so quick to judge people who spread this stereotype. So, I go look up the stats.

The National Bullying Prevention Center has a page on bullying statistics. While the site says as many as one in every five kids is “bullied” at some point, there are a lot of things that they call bullying. Name calling and exclusion are considered bullying along side physical attacks. Those who experience pervasive and repeated bullying are a bit more rare, but still more common than most people like to think. Kids with disabilities and those who are identifiable as belonging to a minority race or religion at a given school experience much higher rates of bullying.

There is also a section on the effects of bullying. Unsurprisingly, kids who are bullied end up with increased risk of “depression, anxiety, sleep difficulties, lower academic achievement, and dropping out of school.” Kids who are both bullied and bully others are mentioned but only to note that they have increased risk of emotional and behavioral problems. So do kids who blame themselves for being bullied.

Another researcher, Tracy Vaillancourt, a professor at the University of Ottawa who focuses on “the bullying cycle,” claims that less than 10 percent of bullies can actually be considered bully-victims. Although she contributes to the stereotype somewhat by completely ignoring other bullying targets in her “cycle” theory, Vaillancourt, offers no guess, educated or otherwise, about what percent of targets actually turn into “bully-victims.”

The statistics don’t mention anything about being bullied making one more likely to bully others or more likely to become violent or anti-social in adulthood. In fact, despite a lengthy search, I could not find any study that hinted at this. Given the pervasive stereotype, the lack of any hard evidence makes me think the opposite is more likely true.

I do know from my own experience that being bullied has made me less likely to be a nice, quiet bystander who enables bullies. Hell hath no fury like getting a little light-hearted bullying in and then being hit crossways by a hurricane that was once an ostracized child.

But turn me to bully those even more vulnerable than myself? Not likely.

There was only one moment in my life where perhaps I stood on that precipice. I was huddled in an out of the way corner on a stairway during lunch in seventh grade when someone landed on top of me. I was bruised and my precious colored pencils were broken. I leapt up and grabbed the body of the intruder and started wailing away at his back with my fists. It turned out to be another bullied kid who had been thrown bodily down the stairway onto me.

I wish I could say that the two of us became friends and held out against the bullies together. I did let go of him and stop pounding on him when I heard the bullies laughing and I got a bit of a look at him. But he ran away and never went inside my short visual range again. It’s a story too often played out. Those who suffer from oppression and bullying are driven against one another to ensure that they remain powerless against their assailants.

But even in those worst years of terror and rage, I was never tempted to actually pick on someone else. There is an ingredient missing that I would have needed to make that even slightly appealing. One would have to feel that bringing someone else down or pushing them even further down would somehow raise you up. I know the theory, but none of the emotion behind it resonates. I never felt even a little tempted.

My son was in a tussle in preschool in which a friend grabbed a toy from him and he pushed the other boy. The boy lost his balance and fell over a bench and onto a pile of legos, which scraped his back. Because my son was the only child of color in the preschool and a member of a very controversial group in our area, some of the teachers and parents immediately labeled my son as a dangerous. There was even a petition to have him expelled, which failed without our intervention because there were also honest teachers who reported that my son was no more disruptive or violent than any of the other boys.

Since then, he has been the target of bullying by older boys in school, but otherwise he hasn’t been involved with fighting at school. I believe that after his experiences, he wouldn’t participate in bullying or harassing another kid.

I can’t be so sure that he would have the confidence to stand up to bullies on his own behalf or on behalf of another. Unlike me, my son has the temperament to be a follower or a bystander, but he also is the kind of kid to quickly empathize with another human or creature.

He is now in the period of childhood in which superheroes play a large role. He loves to fantasize about being a hero and stopping the bad guys. In our discussions and in our choices of bedtime reading, the topic is often real historical heroes who fought to protect the vulnerable.

I am not worried that my son may become a bully because he has been bullied. I do worry that he may follow others into unhealthy habits, including exclusion of others, because of his temperament and eager desire to make peace and be part of the group. But this is something that has been part of his nature since long before racist adults went after him in preschool.

Whether it is my tendency toward quick anger or his bent to go along with the crowd, neither of these are a result of. our experiences as targets of bullying, but rather natural characteristics which come from temperament. In the end, it is empathy that prevents people from becoming a bully and lack of empathy that may cause someone to become a bully.

There are actually life experiences which can impair a person’s empathy. Extreme rejection of a child by family, complete isolation from human contact and being raised in an institutional environment have all been linked to dysfunctions of empathy.

Even though I know some experiences can lead to disruption of empathy, I would not willingly participate in labeling those who have suffered such terrible abuse. Where there is real concern the focus must be on healing. The one thing science knows about redressing an actual dysfunction in empathy is that the only treatment is lots more empathy.

But there isn’t even a real concern when it comes to a link between targets of bullying and the perpetration of violence and bullying. There is no such link. Perpetuating such a stereotype is nothing more than piling on with the bullies to rain more blows down on vulnerable kids and the survivors they become.

Please stop it. Don’t make statements based on such an assumption. Don’t joke about it. Don’t speculate based on this stereotype. It does real harm.

Hair, identity, ageism and a pinch of joy

My mother tells me that she cut my long, wispy, ultra-tangly, white-blonde hair when I was five years old. Being a highly-opinionated and strong-willed child, I apparently screamed at her in a rage. She never did that again.

Eventually, I let her trim the split ends off of my wild mop of hair as a teenager, but I was highly sensitive to how much it was cut. I’m not sure where exactly I got this relationship to my hair.

I think part of it came from my family’s counterculture identity, which I clung to desperately. I was viciously rejected by kids in the small-town school I attended, because of my strange, wiggly, near-sighted eyes and my inability to adopt the subservient, non-centered role that might have won me pity rather than aggression. One of my reactions to that was to brandish my family’s counterculture identity like a shield, possibly as a way to beg the question: Was I really rejected because of something individual to me or was it a consequence of the clash of tribes?

This is me at a hippie-gathering c. 1979

And hair was part of that clash. The men in our family didn’t cut their hair when I was little as a statement of rebellion. My father and older brother both had long, lustrous locks, both thicker and much more easily brushed than mine. My father’s was a a rich, sun-streaked oak brown. My brother’s was golden as a cherub’s. My much thinner, flimsier and frizzier hair was bleached so nearly white that doctors speculated that my vision problems might be related to albinism, though I wasn’t a real albino.

The issue of girls’ hair was not nearly as culturally sensitive. Some girls in our circle did have short hair, often shorter than the boys. But somehow it stuck in my mind that long hair was part of family and clan unity, something I desperately needed.

That is why I had very long, very light hair as a young adult, a feature that stood out wherever I went, and particularly when I traveled in places where black hair was in the majority. It was, in fact, an ice breaker that gained me friendly hospitality in far flung places on more than one occasion.

One of my favorite memories is when I sat on the edge of a massive cliff in front of a Nepali village in the morning to brush my hair and thus attracted a gaggle of young women, who gathered around me with their own brushes and combed one another’s hair and my hair while the sun came up over the Himalayas in a dazzle of warm pastels.

By then, I knew that I had been right as a child. My long hair was an asset that I should never cut. It was finicky and difficult though. Brushing it was often a chore and washing it with the standard, commercial shampoos and conditioners I could afford was a recipe for pain, frustration and a lot of breakage.

I certainly never dyed it. Not only was its color firmly engrained in my identity as well, I was also afraid of what the harsh chemicals in hair dye would do to my already fragile and precarious hair.

Over the years, my white-blonde hair turned a bit darker, with dirty-looking streaks underneath. Sunlight still bleached the upper layer and no matter what hairstyle I tried, it always frizzed out around my face, making me look a bit like a mad scientist and acquiring terrible tangles. It looked best when left down in long, flowing locks, but given how fine and fly-away it was, the slightest breeze or any movement on my part resulted in a tangle that would take an hour or more to brush and leave me with fist-fulls of broken hair that progressively thinned what I had.

Eventually, I discovered through trial and error that the only brush that will handle my hair both gently and thoroughly is an afro pick. White people usually don’t know what exactly these are supposed to be for, so they just assume that’s what I like. Black people tend to give me confused (or sometimes amused) looks. My hair is about as different from African hair as it is possible to get, but that’s simply the only thing that works well.

Finally, in my late thirties my hair started going gray. As with the dark streaks it didn’t go gray in any decent way, just in unsightly patches. One year, I thought my hair was all going to fall out because even with the picks and expensive hair products, I ended up with ever larger fistfuls of fallen and broken hair when I brushed.

And that was around the time when I noticed that strangers started treating me differently. I’ve always gotten some strange looks from people on the street, especially if I don’t carry a white cane as explanation for my strange-looking eyes and my occasional odd way of walking or peering at objects. But this change was different.

When I was younger, everyone from officials to shop-keepers usually defaulted to kindness toward me, often condescendingly so, if they realized I was mostly blind. Still, in a wide variety of cultures, I had generally positive experiences with people I had never met before once I was out of the bullying ring of school. The issue of being actual friends with a blind person was always a different matter, but interactions were pleasant enough when they remained on an anonymous surface level.

Here’s my hair while I’m teaching ESL classes in a remote mountain cabin in the Czech Republic in 2016

That started to change in my late thirties. People in positions of authority are less likely to have mercy on me. Random strangers are less likely to stop and answer kindly if I ask for directions. Shop assistants are less likely to willingly help me. It feels as if I somehow lost a bit of my white privilege. That has made me wonder if I used to pass as abled a lot more than I thought. Maybe it is perceived abled privilege I lost. But I also see another possibility.

I think it’s ageism. The changes correlated exactly with the graying of my hair and the roughening of my face. And it tends to be a lot worse when I am not wearing a hat. So, there’s that.

Last year, when I was part of climate change protests and we had several of our own photographers taking thousands of pictures, I noted that although the core group was only about thirty people of which I was one of the most active, there was not one picture that showed my face in our database after several months. Every other person in the group was pictured many times.

Most of the people in the group were young. This is climate activism after all. But the few older men were seen in pictures. And two other women over forty were also in pictures, though not very often. Their hair was dyed and you couldn’t readily see their age.

But I was invisible. I was too busy to notice for many months until I was browsing the photo archives for an article, and the complete lack was striking enough to stand out.

That’s what I’ve been told happens to older women. After a certain age, you disappear.

I have never been very vain or hung up on appearances in general. My mother also says that when I was fourteen I told her I couldn’t believe people actually cared that much about visual first impressions. Since I couldn’t see such things and objective measures show first impressions to be misleading, I couldn’t imagine how it could be that important.

I did dress up for job interviews and wear professional clothing to work, but I saw this as more of a uniform than a ploy to make good first impressions. It was my positive attitude, skills and intellect I counted on to get me through doors. And for awhile, that worked.

I was fortunate enough to have a face that more fashion-conscious women told me didn’t desperately need makeup. I was young and healthy. and I did have that striking hair. So, until I started to age, doors were generally open to me.

That was another thing that closed down hard and fast in my mid-thirties. I can get tutoring jobs. I guess teachers are allowed to look old. I can get the occasional online writing gig where the image of my face is never considered. But I can’t get any other kind of job no matter how well my qualifications fit.

And networking to get ahead… Not a chance. That’s all about first impressions. I know that now.

Picking black berries in autumn color

A few years back I acquired a tutoring student who is a country manager at a major hair-care company. And she often commented on options for my hair and brought me samples of the company’s products. These helped to slow the shedding and breakage of my hair. And she introduced me to the idea of using natural henna and other herbs to dye my hair.

At first, the whole idea of dying my hair was disturbing. The color was almost as much a part of my identity. as the length. But somewhere, deep down, I had always had a desire for red hair, since the days when my idol was the cartoon of the Strawberry Shortcake doll and my primary imaginary friend in looked like her.

Then there was my long love-affair with Anne of Green Gables as a.teen in a household that only got educational television. One way or another, in my generation blonde was sort of considered “desirable” but at the same time blondes were ridiculed. Red-heads seemed to be somehow outside the rules of fashion and usually both strong and independent.

And of course, the main shade henna does is red.

But the hair-care manager insisted that this kind of natural hair dying could only be done at a salon with complicated methods and equipment. That was a step too far. Even if it weren’t an extravagant expense, I’m a DYI kind of girl. So, I still hesitated—until a red-headed friend from the Bohemian highlands told me that she colors the gray spots in her own hair with henna and that it is possible to do alone.

So, finally I found a source of a completely herbal hair dye and tried it. The first shade I used barely gave my hair a gold tint. So, I went for one that promised a much darker red than I initially wanted. The result was perfect, just the shade of strawberry blonde I had always wanted.

Here’s my new look.

I dyed my hair one sunny early autumn day when I was at home alone and waited to see what my husband would say about it. He was actually struck speechless for a moment and then showed uncertainty and concern. Had I done something rash again that would have negative social consequences? My son was equally disconcerted.

Finally, I found a few people online who liked my new color, but the response wasn’t unanimous, except from my ESL class of older women. They were all enthusiastic and their delight looked genuine enough.

But the thing that really let me know it is a good thing is that I can’t help smiling every time I catch a glimpse of myself in the mirror. I haven’t enjoyed looking at myself at all in years, and I don’t think I ever actually felt good about my appearance. In some ways that’s enough for me.

So, I’ve learned that appearances do matter much more than reason dictates. I’ve found out what happens when people just don’t like the look of someone and what happens when a woman crosses the boundary into looking old.

I don’t like it and I see the dismissal of older women as a key component of our society’s patriarchal disease, but I have also accepted that it is our current reality. And I’ve realized a long-held, somewhat frivolous wish.

Am I buying in to the patriarchy by coloring my hair and hiding my gray? Some may think so. It causes me a twinge, but the joy I feel at having this one little bit of vanity for the first time outweighs it. I would have felt the same joy even if my hair wasn’t gray, but I didn’t know about or have access to a healthy hair dye in those years.

I hope you are likewise able to fulfill a wish every now and then (even one that is important to your heart). Fulfilling a wish beyond that necessary for survival gives joy in this time of Covid-19. Use these changes, whatever they may be in your circumstances to try something you always wanted to.

Keep your convictions strong. Keep openness and care for those who are cast out. After all, we are the ones who become the change..

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.

Is your family gathering inclusive or just quiet on controversy?

There has been a rash of articles and posts about avoiding arguments and political or religious disagreements around the holiday table this year. The focus of most of these pieces is on peaceful, quiet and controversy-free gatherings.

Tensions haven’t been this high across family tables and between generations in half a century. Many of us are exhausted from the sheer complexity of modern life and by hardships and pain that seem to come out of nowhere. No wonder most of us just want peace more than anything.

Creative Commons image by Neale Adams

And yet, quiet is also what happens when someone dies, prison doors close or bullies smirk in satisfaction.

When I read those posts on avoiding controversy, the picture that builds in my mind is of a woman or a few women—sweating and bone-weary—checking the turkey. Then, the man of the house comes and carries it to the table amid applause, though the only other time he touched it was when he commented critically on its size early that morning as a woman was putting it in the oven. He cuts it and magnanimously passes out pieces, while the women wash up the spatters and hurriedly take off aprons or tuck up hair as they run to take their places at the table.

One woman at this gathering with a chronic illness hid in the study and now she comes to sit down at the same time as the other women, hoping maybe no one will notice she wasn’t helping because of her physical pain and praying no one will ask her if she’s still trying to get pregnant or why she doesn’t just adopt. At the table, the LGBTQ+ teen sits silently, head lowered, with inner turmoil, fear and doubt hidden.

The aunt with a husband of another race and mixed race children is mysteriously absent after last year when someone brought up her husband’s professional advancement probably being due to some kind of affirmative action. The disabled child is told she’ll have to leave the table if she doesn’t stop asking for something. The solitary uncle with Asperger’s Syndrome is chided for putting his hands up by his ears… again.

The child is frightened into silence. The uncle is still. Everyone says something they are thankful for. Even the teen mumbles something about being grateful to be alive, which most laugh off as being teenage petulance. They eat and watch football.

That is a family table without controversy.

And I want no part of it.

I am not saying it has no merits at all. We are fortunate to have families like this. Many people with disabilities like mine who will spend this winter holiday entirely without family could probably teach me a thing or two about the virtues of gratitude.

But I just want to say that silence and a controversy-free table shouldn’t be our goal. The pain at that all-too-common table I described is no less than the pain at many tables where there are hard words spoken. The goal instead should be empathy and gentleness—yes, even gentleness toward those with too much privilege who may be oblivious to the difficulties faced by others.

It is a hard thing to pull off, but here are some tips I would like to implement for a holiday gathering that is a safe zone amidst conflict. You are welcome to join me in this effort.

• Ask those who can to bring something or help out. Help children and teens to make some contribution. Give older people and sick people possibilities to contribute while seated, for example by watching a baby, folding the host’s laundry that otherwise won’t get folded, cutting up the salad or any number of other things that require little energy. Or encourage those you know are exhausted to relax.

• Make sure that the same people who are usually working long hours in the kitchen during the holidays are pampered a bit and have as much help as possible. Make sure to appreciate contributions in front of others, including contributions that happen outdoors or which are less visible.

• At the beginning of any such important family meal it is helpful for the host or other senior member to make a statement about inclusion and caring for all, such as, “I want everyone in our family to know that we love you and accept every part of you. We will love you and accept you at our table no matter how you dress, who you marry or don’t marry, what you do or don’t do for a living. If you’re in trouble, we are with you in sickness and in health, as best we can stand by you. The only way we’d have to love you from a distance is if you abused others and wouldn’t stop. Family by blood, by oath or by choice means belonging.” Studies have shown that even just mouthing words about inclusion really does decrease incidents of abuse and exclusion. And surely it would also comfort some who have reasons to fear rejection.

• If your family has a ritual of prayers or thanksgiving before these big holiday meals, encourage family members to bring quotations or prayers that resonate with them from various cultures and traditions, whether spiritual or secular. Be clear that all are welcome, even when you’re speaking to those who you know have a firm religion. This will help to prepare them for including others, and will go a long way toward welcoming those who might feel marginalized. One way to make this particularly fun is to bring a lot of different quotations and prayers on slips of paper and let people draw them out of a hat to read or choose from a pile in the middle of the table.

• When (for most of us it isn’t a question of “if”) someone protests the inclusion of traits or beliefs they consider to be wrong, have a clear response prepared to refer them to, such as, “In this house we don’t allow exclusion or derogatory comments about traits someone can’t control or about beliefs that don’t harm anyone else. Please respect the house rules, if you wish to stay.” There is always the question of tolerating the intolerant. The only way I know to solve this one is to say that what we tolerate is what harms no one, while we don’t tolerate that which infringes on or harms others. We don’t insult someone who suffers from addiction. Yet, we also don’t let someone force harmful smoke on others. If you are unlucky enough to run into the argument that being gay or trans is a “choice,” you have my sympathy and I suggest simply sticking to the facts that medically it is not considered voluntary and that these traits do not harm anyone else.

• It is hard to ban all “political” discussion in a world where almost everything personal is political, but it may be a good idea to ask your family to refrain from discussing political figures or specific proposals during the holiday gathering, if you know there is division in your family. There is a difference in the provocation in a statement like, “I want to toast to the health of Bernie Sanders. May he live long and lead well as president next year,” versus something personal but also potentially fraught with politics like, “Hi Grandma, this is my partner Sydney.” Laying down the rules on that difference is worth the trouble.

• If things do get heated, remember that silence usually favors the privileged and helps abusers. It rarely comforts the vulnerable or the unjustly rejected. Favor those who are generally marginalized in any moderating of discussion. Remember that tears and anger as well as withdrawal are common reactions to hurt and exclusion. Defend anyone who is disrespected for circumstances beyond their control or for harmless beliefs. Ask those who attack or belittle others to be silent first, when trying to put down open conflict.

• Most of all listen and work toward actual empathy. As hard as it is, if and when words are spoken on difficult subjects, listen to what is expressed and try to reflect back to the speaker in a way that assumes good intentions. “Uncle Brad, I am hearing you say that you feel like liberals want to let in all these refugees but we don’t even talk to our next door neighbors. I know you’re the kind of guy who helps anyone stuck by the side of the road and I believe you really do care about people.” Then if you really don’t want to talk politics, stop there. Don’t try to give your side. Just ask if Uncle Brad is willing to put off the discussion to another time.

• Consider asking your family to use a gift spending limit or a homemade gift exchange. Whatever we can do to lessen the level of consumerism in our lives will help in many ways. Beyond that, as wealth inequality widens and families become more diverse, wealth inequality within families also widens. If you haven’t yet witnessed a family conflict sparked by accusations or insecurities over differences between gift values, you definitely don’t want to find out what such a fight is like. Sort names randomly in advance and encourage family members to make a homemade gift, a gift of a shared experience or simply a gift under a reasonably low price limit. Or alternatively, encourage homemade gifts for everyone (such as soap, candles, cookie tins, ornaments, potholders, photos, artwork, etc.) and encourage those who don’t do crafts to buy only small gifts for everyone of similar type (pens, chocolates, gloves, etc.).

• Get to know the individual needs in your family as best you can. You may have only vaguely heard that aunt-so-and-so is sick long-term. Find a moment, on the phone beforehand or privately during the event to ask if there is anything she needs. She’ll probably say “no,” even if it’s not true, so be on the lookout thereafter. This isn’t “being a mother hen.” It’s just being a healthy family member. The same goes for family members with long-standing, known disabilities. You may think you know what your brother on the autism spectrum or with a vision impairment needs, but the chances are that since he grew up he has learned a lot more about what he needs himself that he didn’t know before. Ask how this family gathering can be made easy and comfortable for people with infants or older people or anyone else who might have uncommon difficulty. It may seem like extra effort that has to be put out in the beginning, but the savings in stress and effort over the long run are enormous.

• Many winter holiday celebrations, beyond Thanksgiving, incorporate a ritual of stating one’s reasons for gratitude. This is a beautiful tradition, however it does entail a focus on forcing everyone to be cheerful, regardless of circumstances. A good addition to this might be to state what one is thankful for and also a mistake one would like to make amends for. This may make those most privileged a little uncomfortable, but no more than the gratitude thing makes those less privileged uncomfortable. It balances and makes the ritual “real.” Alternatively, each person might state something they would like to heal or rectify in themselves or their family over the next year.

• As the previous point implies, not everyone is happy and cheerful during the holidays. It is wonderful when we can gather around with genuine smiles and belly laughs full of shared joy. But there are times and circumstances when we can’t. Be aware of those in your family, including yourself, who might be struggling to be cheerful. A hug, an offer of a quiet place to withdraw when needed and an acknowledgement that “it’s okay to not be okay,” go a long way toward real inclusion and are likely to bring on more smiles.

This list probably isn’t comprehensive. It is just my ideas and at the same time it is overwhelming for one person to take on. If you have a family which is consciously trying to transform interactions and make a more peaceful and inclusive gathering, it may be helpful to print this list out, cut each point onto separate pieces of paper and let family members choose to be in charge of encouraging and implementing one or two points.

The person who chooses a given point then becomes the family advisor on that issue for the gathering. They make an effort to implement the point personally or organize any group activity involved and they may also gently remind others of the shared goal of inclusion and peace when tensions rise.

Above all, remember that this is not easy but it is worth the effort.

Peace be on your house and may love infuse your winter holiday celebration.

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

Macrocosm

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

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

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

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

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

Photo by Arie Farnam

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

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

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

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

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

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

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

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

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

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

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

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

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

Microcosm

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We’ve got a problem.

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