Who would I have been in the days leading up to Nazi Germany, Stalinist Prague or US slavery times?

In 1996, I sat in a class of American college students on a study-abroad program in Olomouc in the Czech Republic. A Czech man just a few years older than us came in to give a lecture about life in the 1980s under Stalinist totalitarianism and the Soviet occupation. I don’t remember the exact details of the lecture but it was good. It was moving and detailed and real.

I was the only one in the class who knew much of it already and who spoke Czech. I had been to the country before in 1992 and had my mind exploded during a week in a rustic cabin with a group of young people who had been quiet dissidents three years earlier, copying down illegal protest songs by hand in tattered notebooks.

Creative Commons image by Xabier Otegi

I absorbed the university lecture eagerly, asking several questions at the end to draw out interesting parts of the man’s story. Then I made myself stop. I didn’t want to hog the space and I knew I should let the others ask. But when I looked around there was not one hand raised.

One of the American college students, sprawled in a chair at the back of the class, drawled, “Yeah, that’s the difference over here. Americans would never have put up with that.”

It sounds like a cliche but I really felt like something hit me in the chest. I had no breath. Before I could recover, the class broke up and the lecturer exited quickly, while my classmates put their notebooks away and went out for an afternoon of Czech beer.

Listening to the confirmation of Brett Kavanaugh to the US supreme Court and the protesters screaming for all they were worth from the gallery, I thought of that remark and of Jan Palach, the student who lit himself on fire in protest of the Soviet invasion of 1968. Palach is a symbol of the final and most extreme protest when oppression has become so immense that dissent is easily silenced, dismissed, buried or imprisoned.

Things have gone from bad to worse in the US in the past two years. The quiet corporate coop that made a mockery of electoral democracy for decades has become overt. The extreme racist, misogynist, eco-cidal ideology that was threatening before has taken more and more power by more and more unjustifiable means.

Plenty of readers will sneer at my title and say that I should not compare this to Nazi Germany, Stalinist Czechoslovakia or slavery times. We are not seeing people shot in the streets… well, except when they are black and vaguely suspected of something. We can still protest. We cannot compare ourselves to Jan Palach and those who had all of their other options taken away.

And that is true. We still can protest. And that is why those screams made me think of Jan Palach. Those protesters hauled off by security were mocked by many. They screamed as a man credibly accused of sexual assault, a man with clearly stated misogynist and extremist views was given lifetime power over us.

They yelled and made a scene and they were ultimately powerless to do anything. The charade of “democracy” went on with smug indifference. Those in power snicker and call their “tantrums” futile and petty.

But it is not nothing to scream at injustice and the destruction of a democratic country. It is not nothing. It is the one thing that still stands between us and the likes of Jan Palach. We can still scream where it is heard. He couldn’t without ending up being tortured in a dark cell.

There is a meme on Facebook that says “You now know what you would have done in Nazi Germany. You’re doing it right now.”

The idea is that the early days of Nazi Germany did not look so different from our current situation, a terribly polarized country with a ridiculous, extreme right-wing faction gaining popular support among a certain frustrated portion of the population while most of the traditional powers tut-tutted and insisted that any resistance be done through their channels. Most of the middle class and intellectuals were sure for a very long time that it wasn’t really that bad, that these nuts would not get total control. They considered the Nazis to be deplorable certainly but not a real threat.

And most people either were swept up into the extremism because they were easily swayed by advertising and razzle-dazzle or they disliked the extremists who gained power but just grumbled quietly about it and mostly made sure not to take any great personal risks.

The thinking behind the meme is that the beginnings of Nazi Germany looked a lot like the United States today and so it is now easy to tell what kind of person you would have been then. And in some ways that meme is right. We have far different technology and public discourse and we are more aware of totalitarianism than most people were then. But the same dynamic is clearly visible, the same divided groups and the same vulnerability to manipulative extremism.

I don’t compare our times to the height of Nazi Germany, Stalinist Prague or slavery times. I do compare our times to the run-up to such moments in history. We are still in the stage where we can scream and not be shot—most of us. We are not yet faced with the choice Jan Palach perceived—to live in utter oppression or to die loudly enough that the scream will at least break the oppressive silence.

And so I ask myself who would I have been in the days leading up to the darkest times in history?

And today I know the answer.

I would have been a writer who wrote the truth even if it meant losing jobs—and eventually a career—over it. I have done that. I have lost jobs and lost my hard-fought career in newspaper journalism with one of the best national newspapers in large part because I wouldn’t tow the line and I broke out of the mold of the celebrity-focused, reality-impaired news too often. I had a couple of run-ins with censorship of historical facts and ended up on the NRA’s journalist “hit list” before I was done.

I would have been a member of a vulnerable group who could not get work or participate in mainstream society in my own country because of the self-destructive way that country was organized which directly excluded my group. Because of that I would have been forced to leave the country and spend my life far from my home and family. I left the United States twenty years ago because as a legally blind person I could not be independent and fully participate in society without public transportation, which is today one of the greatest needs for everyone to combat climate change. Because I am legally blind, the community I emigrated to does not entirely accept me either, but I do have public transportation and so I can have a normal life, a family and a job. The same was true of many who fled destructive regimes for other reasons—less-than enthusiastic welcome but a chance to live.

Whether I stayed or left, I would have been active in protest movements, organizing as long and as hard as I could. I led protests against the war in Iraq in my city, even though it cost me another job and impacted my health. But for a long time I would not have been among those who dropped everything to protest full-time or risked the most. I participated in actions to support Greenpeace blockaders who did risk their lives to protest US imperialism and environmental destruction. I was terribly afraid when I was almost caught by military police while bringing food to an encampment. All I risked that time was a trip to the local jail, a fine and a record. But I quaked with fear and because I was trying to adopt children and didn’t want the possible bureaucratic repercussions, I didn’t ask to take on a riskier role in the protests.

In those other times, I still would have adopted children from a vulnerable group, despite disapproval from many sides. I have done that. I would have been one of those people who held down a hearth and cooked food and let people traveling to protests or fleeing from danger sleep in their home. That too I have done.

Creative Commons image by Michelle of flickr.com

I would also have been among those who eventually became too exhausted by hand-to-mouth work and health problems to go to most protests. I am exhausted. Most protests are too far and too difficult for me to get to anymore. Then again, needy children keep me tied down. I would have been one of those who found a small corner to hide in when I got older and less physically strong. I would have continued in small ways to resist personally and to give help to the endangered ones who crossed my path.

I would have been among those who wished to do something significant, to join the “real resistance,” but didn’t first because of fear and later because of those who already depended on me. I have fantasies of helping refugees from war-torn and climate-devastated regions. I have fantasies of going off to live in camps at places like Standing Rock to put my body between the corporations and the destruction of the earth’s climate and our children’s future. But I haven’t done it. I am less afraid now that I am older. There is less at stake because there is less of my life and no career or adoption process left to lose.

I would have been a quiet ally to those most targeted by the oppression. I would have stood up for them against social bullying and helped if I could. But I wouldn’t have had either the energy or the capacity to do much that really mattered, because I am also not among the privileged and because even when I don’t fear for my own life and livelihood, I fear for my children, and because of distance and lack of funds and reticence toward cold, hard living.

I would not have been a hero or one remembered by history. I would not have been a collaborator or someone who willfully didn’t see what was happening. I would have been willing to sacrifice a job or a career, but not my family in order to tell the truth. I would have done small things to help those worst affected and felt guilty that I didn’t do more. I would have been among those taking carefully measured risks. And unless I was among the unlucky few—like say Heather Heyer— I wouldn’t have paid the highest price. I know because that is the kind of character I am in our current story.

Have you let yourself think this through? Who would you have been?

Avoid falsely easy answers. You may be among those targeted by hate today but there are likely others who are in greater danger—assuming you have the leisure to be reading my blog.

If you are among those most targeted today, consider that victims also had options back then. Would you have been among those who left early, who found a way out or a way to fight back? Would you have been among those who covered their ears and prayed that it would not go so far? Would you have been among those who blamed your friends and neighbors or joined with them in mutual aid to survive? What is it you are doing today? Are you lashing out at allies or frozen with fear or getting your children to safety and building alliances?

And if you are part of a group that is not yet targeted, who would you have been then? Would you have been the bystander who knew a bit of what was going on but chose not to get too involved? Would you have been the one who who shut their ears and eyes to the suffering of others and the devastation of their homes? Would you have had the courage to use what rights you had to say “no,” to protest loudly when you could and to give aid quietly?

Who would you have been? A lot of the wondering has been resolved in the past two years. Who are you now?

In the hurricane: How one child's storm can swamp a family

Snapshot

Rain patters on the roof on a Saturday morning. The comforting, homey sounds of pouring cereal and my seven-year-old’s chatter lull me.

My nine-year-old daughter cruises around the room, poking at objects, shifting things around randomly, dropping things, babbling in the toddler syllables that take over at home from her fairly normal speech in public.

After a few minutes, she disappears outside. I will need to corral her soon and ensure that she takes her supplements, brushes her hair and eats something, preferably something with protein, but I put it off for a few more minutes. We almost never have a relaxed weekend morning at home.

The seven-year-old starts his piano practice and homework. The nine-year-old has been in and out several times. I manage to get her to swallow the supplements and she only screams a little when she has to sit and brush her hair. They have been really good this morning and I remember that there is the last of a cobbler in the oven.

I talk my daughter into an egg for breakfast, as brain ballast, and then tell them we’ll have a morning treat—cobbler with some spray whipped cream from the can that Papa got yesterday.

Creative Commons image by Hamid Najafi

I know this is one of my daughter’s favorites. With its contents of sugar and preservatives, canned whipped cream isn’t great for her and it could cause a bit of chaos and mental fragility today, but she’ll be able to blow off steam outside.

The kids both cheer, united for once, and I go to the fridge to get the coveted can.

A quick glance doesn’t reveal it so I start shifting containers. Then I start a systematic search, top to bottom. No whipped cream. I

know it was there last night and I know my husband doesn’t like it. I ask my daughter, who is most invested in it to come and look. She scours the fridge and sounds completely baffled by the missing whipped cream, though not upset.

“I’m going outside,” she says with a resigned shrug. “I give up.” No baby talk in that at least.

I notice when she’s at the door. She’s headed out the door away from the trampoline and the swing. “Where are you going? “ I ask absently, my head still in the fridge.

“To see the chickens,” she says and slams the door.

A few minutes later she is back, buzzing around, her vibe becoming more frantic as the morning progresses. She knocks books off the table and scatters bits of broken plastic from a toy across the floor. She puts muddy hands on the food I’m making for lunch. She won’t either do her homework or play. She refuses cobbler with no whipped cream. Too much fruit. “Yucky.”

Then she says she’s going to visit the chickens again.

“What are you doing with the chickens? “ A jolt of alarm goes into me. Our chickens are large, tough and utilitarian. I am only a little concerned for their safety, but she has never shown any interest in the chickens before, except for the one day when we brought home somewhat cute, half-grown chicks.

“I just really like the chickens. I really really like them,” she calls back as she slams the door again.

Suspicion blooms inside me. I meet my seven-year-old’s gaze. He doesn’t say a word but slides off his chair and dashes to the door. Not a word has passed between us on the subject but I know he is going to spy out what she is doing at the chicken coop. It will no doubt result in conflict and very possibly a fist fight.

I’m too exhausted to stop him though. The past few days have been a whirlwind—an endless string of work, her meltdowns, doctor’s appointments and school problems. The relative calm of cooking while dealing with kids has me groggy. And anyway it’s seventy yards up a steep hill to the chicken coop and I have onions frying in a pan for soup and a dishpan full of soapy dishes.

Someone needs to check on what is going on at the chicken coop, so I let the seven-year-old do it.

Image by Arie Farnam

In two minutes, he’s back, the empty whipped cream can held up demonstratively. “Yup, she was squirting it into her mouth,” he says, confirming both of our unspoken suspicions.

I am grateful that he doesn’t care that much about canned whipped cream. One less bickering fight between siblings. I’m also impressed to see that he managed to get custody of the canister without physical injury… hopefully to either of them. The can is entirely empty, so she probably abandoned it to the chickens.

Confession

I’m going to write about life and parenting with a neuro-diverse child. There will be people who judge me for even mentioning children in my writing. The new thinking is that one should wait until they are adults and then ask for their consent before writing about them.

There will also be those who curse me for telling the harder side of living with a neuro-diverse person. There is a heavy push for parents to gush about how privileged and honored we are to parent this specific child. It comes after several decades in which parents of neuro-diverse kids were sainted and considered to be charitable saviors of mental invalids. Now the pendulum has swung the other direction, and we are required to abase ourselves in gratitude for a life that is in most cases still both physically and psychologically exhausting but also just part of life.

As usual, I am not much influenced by the trends. I am writing about this because there is a crisis in judgment of and pressure on families with neuro-diverse members. Services and educational adaptation are minimal and the vast majority of the blame for any difficulties is shunted onto families, who are almost always struggling as hard as they can to help those with neuro-diverse conditions survive and thrive in a brutally neuro-typical world.

Another reason is that once the years have passed, it is unlikely that I or anyone else will remember what these years were like. Middle childhood can be a very difficult period for many neuro-diverse children and their families. Most outsiders have no clue and are quick to jump to judgment when they see the outward manifestations. Even neuro-diverse adults often forget what the day-to-day reality was like. This is a world that rarely gets a detailed accounting.

For that reason as well, I will write.

Snapshot

“I want it! Now! Now! Now! I hate you! You’re the worst parents! I hate you! I want it! Please! Please! I’ll be good! I’ll be sooo good! I hate you! No! No! I want it!”

My nine-year-old daughter shrieks as my husband and I pull her out of the mall by gripping her upper arms on either side, careful not to injure her but firm in our refusal to let her topple displays or persist in a demand-based tantrum.

This was meant to be a quick stop for groceries but things have derailed. She is twisting between us, kicking at our legs with her sharp little princess heels, interspersed with frantic promises to be perfect and manic screeches of hatred. She turns to sink her teeth into my hands, but I am still stronger and quicker than her. I shift my grip and deftly avoid the bite.

The meltdown was most directly sparked because she saw the round pink globes of LOL dolls in a toy store window and insisted that she must have one. These collector’s dolls come in opaque round packages. You cannot tell which one you’re getting. That apparently is the fun in it or maybe just the profit in it for the manufacturer. They are only a tad more complex than the toys in a Happy Meal but they cost a solid $25 per secret package where we live.

My husband and I aren’t impressed by the dolls in the first place and we generally don’t buy toys for the kids during random shopping trips, let alone anything that expensive. Her name day is coming up in a few weeks and I suggested that she could ask for one of these dolls for her name-day gift. That started the whining, yelling and kicking, though it was still at a somewhat subdued wheedling level and was mostly directed at Papa, who is more amenable to impulsive purchases than I am.

But he has been practicing sticking to his statements with her and he had already said no. He repeated himself more firmly and that sparked the all-out revolt.

We finally pass through the automatic doors of the mall and my husband releases her arm, apparently assuming that she’ll stamp her feet, sulk and eventually recover. But instead she wrenches her other arm out of my grip and spins toward the doors with lightning speed. I catch her round the middle, glad that I’m still relatively agile. My husband turns, slower to react and stares. Then she tears herself away from me and sprints into the parking lot, across lanes of traffic, heading in a straight line away from us.

“Get the car!” I yell over my shoulder and dash after her.

I’m very nearsighted and I dare not let her get too far away, but I know that the only way we’ll contain this situation is if we can get her in the car. She reaches the end of the parking lot without slowing down and disappears through a line of shrubs still a hundred feet in front of me. I break through the shrubbery and find myself on the exit ramp of a gas station.

I don’t see my nine-year-old as I dash across it and come around the pillars of a giant gas station sign. There is another line of denser shrubbery behind it. I run past it but then turn, real fear hitting my breathless body as I survey the gas pumps and cars. There are now many directions she could have gone and I can’t see any sign of her purple shirt and turquoise mini-skirt.

Fortunately, I’m seriously winded by this time though and my feet don’t carry me far beyond the shrubs. I hear a tiny noise and spin to see her crouching low under the branches. She stares for a split second before she leaps away and that’s all it takes. I grab and latch onto her arm with an iron grip. I pull her back around to the exit ramp and my husband drives up in our car, which is something between a hatch back and a mini-van with sliding doors in the back. He opens a door from the inside and I wrestle our struggling, screaming daughter inside.

No one appears to have noticed and I’m momentarily torn between relief and cynicism, considering that to any bystander the scene just played out looked exactly like the classic Hollywood portrayal of a child kidnapping.

Creative Commons image by Jeffrey Kontur

She is still screaming and kicking in the back seat. We can’t stay on the exit ramp with cars behind us, so my husband drives two blocks to find a place to pull over, so that we can wrestle her into her seat belt. She seems moderately calmer and we reiterate that she can ask for a toy for her name day but she will not get this toy today or anytime soon, due to her current behavior.

We have to keep going. We’ve had dinner and it’s nearly bedtime. If she doesn’t get into bed at the right time, she will meltdown in the morning and not get to school and then someone won’t get to work. “Just wait them out” is almost universal parenting advice. It’s meant well but it often doesn’t work in the real world.

We get back into the front and my husband pulls the car onto the freeway. It seems unlikely that she could actually plan this, but as soon as we’re in heavy traffic she starts up again, kicking my seat and hitting her brother, yelling insults at him. I reach back and seize her hands, keeping her from physically tormenting the seven-year-old.

By this time we’re on a freeway bridge and there is nothing more to do. I meet his eyes and talk in a low, calm voice under the screeching.

“I know this isn’t fair. I’m sorry. I need you to be a big kid and be calm,” I tell him. I explain that the nine-year-old is having a really hard time and has a problem in her brain that makes it very hard for her to regain control. She screams insults and bullying names at him and starts to cry a bit. I hold him with my gaze and he keeps his hands away from her.

By the time we reach the next exit, she is a bit calmer. We discuss stopping in low tones but it won’t help. She will see it as power if the whole family has to stop and wait. Both my husband and I are still relatively calm and this alone is a major victory. We have managed to keep our cool despite a pretty extreme scene.

I lay out the consequences of further physical attacks to the nine-year-old, while still containing her hands. I don’t kid myself that this will have much effect. When she’s in this kind of state, her ability to process cause and effect is nearly nonexistent.

Even so, she is quiet enough that I release her hands, which turns out to be a mistake. She seizes the nearest hard object, her large plastic doll and throws it at my husband’s head. Since he didn’t take that exit, he’s wrestling with a snarl of fast, big-city traffic. I mange to knock the doll aside so that it hits the headrest instead of his head and falls onto the seven-year-old.

I give him a quick apology and make a left-handed sweep of the back seat, removing every hard object I can reach that she could throw and piling them at my feet in the front. She’s screeching at top volume again, hurling most of her insults at me and Papa. The seven-year-old has flattened himself against the door on his side.

I turn back to the front and check to make sure that my husband is undisturbed while driving. The small shocks of her feet slamming into the back of my seat irritate me, but it is mostly the greediness of her demand for immediate toys that makes me seethe with anger inside. I am hanging onto my calm by a ragged thread.

I spare a moment to think about parents with other types of disabilities and single parents. What if my husband was driving alone with them when this happened? What if I didn’t have above-average physical strength and speed for a woman or what if my eyes were just a bit worse? The thought of the judgement of people who would see us and think we were being overly harsh and that we should somehow magically find a way to handle the situation with grace and sweetness fill me with disgust.

Then the seven-year-old cries out a warning and I turn just in time to fling up a hand as the nine-year-old launches her booster seat, which she has managed to get out from under her, at my husband’s head.

I don’t catch it and she seizes it again when it falls. She draws back for another throw.

“Don’t!” My husband’s strangled voice indicates that he’s struggling with a major freeway interpass and he can’t even have me twisting in my seat and waving my arms around. I hold my hand up grimly, ready to take whatever she has got to keep it from hitting the driver in the head.

Exhaustion

Every day is exhausting and hard. Some days I feel like I'm in a war zone. 

I don't say that lightly because I worked in war zones years ago. At the end of the day my ears are ringing, my vision is fading in and out and I am staggering on my feet. Every inch of my body aches and my shoulders and cheeks are bruised from blows. My husband's face is blank and his eyes are glazed after only being in it for a few hours after work. My son lies in bed in a fetal position. 

The screaming hurricane is finally down at nine in the evening but we don't have a glass of wine and watch TV. I don't write on evenings like this. We just totter off to bed, separately, sometimes without even a word or a touch. 

It isn't every day but it is like this most days.

I recently read The Little Monster: Growing up with ADHD by Robert Jergen. The author, a man with severe ADHD and auditory processing disorder (the same categories of disability as our daughter), describes growing up in a fog, unaware of many of his actions, unable to remember what happened, what he said, what others said, moment to moment. He wasn't just in trouble. His parents, even used to four rambunctious boys before him, were desperate. 

I listened to it as an audio book on a rare day at home alone while my husband was out with the kids. During the portion of the book focused on Jergen's childhood, I gritted my teeth and muttered angry words at him and sympathy for his parents. The book does a good job of helping the reader understand his experience and he didn't describe his parents nicely, but I knew what it was like for them.

He did accurately describe the endless hurricane of chaos, destruction, obliviousness and carelessness with which he filled their home. He was the youngest of five boys, so it is possible that his presence wasn’t as all consuming as this hurricane is in our home.

Here there is often only one person who is allowed to be human on many days, only one person who is allowed to have needs. Nothing and no one can exist beyond her when she's in meltdown. And yet it isn’t her fault any more than my bad eyesight is my fault. And in rare quiet times, she promises to try not to be a hurricane.

Jergen writes that he believes everyone in the future will hope their children have ADHD. That is the only thing in the book that is truly wrong and infuriating. I have great sympathy for him and honor his experience and his admirable truth telling about having these disabilities, but the truth is also that he has never parented a child, let alone a child with his type of disabilities. 

I am glad for the hope that at least someone with these types of disabilities has found a measure of happiness and independence as an adult, though it is clearly noted that Jergen tested as highly intelligent on standardized tests even as a child and many children with these disabilities do not.

As a person with a significant visual disability, I know all too well that adaptation can be done and yet that it takes a great deal of mental resources. I have watched the vast majority of blind and visually impaired adults sink in to poverty and isolation, while I battled my way to a life with a family and a middle class lifestyle. 

Some kids with ADHD are also very intelligent, just as there are people with autism who are high functioning with genius-level intelligence. That has, in fact, become a kind of stereotype for ADHD, but it isn’t actually the norm.

Those people with disabilities who get a voice to speak about their experiences are those with abnormally high intelligence who manage to find coping mechanisms. They are not the ones who are destroyed and sentenced to failure. poverty and the astronomical ADHD-in-prison statistics. Coping mechanisms may be beyond the reach of many.

Snapshot

The house is a disaster. There are toys and clothes scattered all over the kitchen and hall floors. The kitchen is piled high with dishes. I’m cooking two major meals at once because the next day is jammed with doctor’s appointments and school events for kids.

My seven-year-old gets up from the early lunch I heated for him and goes to get his own backpack ready for a soccer tournament. I call out items he shouldn’t forget and I manage to fill his water bottle in between stirring veggies on the stove and putting breakfast things back in the fridge.

I put a kiss on the top of his head. I know there are benefits to hardship and having to be moderately capable at almost eight will put him ahead of his peers in many ways. But it still makes me sad that he gets no more than this hurried send off for the first soccer tournament of the season. All the other kids have devoted parents cheering from the sidelines at every game.

But it isn’t going to happen for us. For now I’m just grateful that the nine-year-old is letting me cook very briefly. She is actually doing something nice for once. I put the box of washable kid-safe paints where she can access it near the drawing supplies, and she has the contents spread out by the fireplace. Hopefully she’ll paint and I’ll get thirty minutes of cooking done.

Creative Commons image by Dylan Parker

On my way to the freezer I walk by and notice that she has opened every single color of the washable paints, which are used not just by her and her brother but also by my ESL students. I stop to make a quick check and find to my dismay that the damage has already been done.

Every single color has been squeezed out of the bottles into a plastic large container and she now has a half gallon of dark gray paint. There are dregs in the bottoms of a few bottles, which she didn’t squeeze hard enough but mostly the paint supply—at least $50 worth—is gone. That is the price paid for the last twenty minutes of uninterrupted cooking.

Snapshot

“I don’t know that letter! I don’t know it! Let me go! No! No1 No! I won’t do it! I don’t know how to read!”

The nine-year-old is throwing a tantrum because she momentarily cannot remember the sound made by the letter A. She can actually read, though dyslexia makes it a struggle. But her short-term memory issues, a common part of ADHD, makes it so sometimes she truly cannot remember the sound of a letter.

The bigger problem is that she knows this happens and she is not above pretending to have such a memory attack in order to get out of homework. My husband is close to tears and this has only been going on for one hour.

The day is yet young at 5:00 pm.

By 6;00 pm they have switched to math, giving up on today’s reading assignment. Dinner is ready and I take over from my husband.

“How in the world am I supposed to explain algebra to her?” he fumes at the textbook. The problem reads 42 - ? = 14.

Our nine-year-old can—on a good day--just barely work out 42 - 14 = ? with help. But my husband never needed to work at math as a kid, so he doesn’t remember how you get from that to the real problem. I wasn’t as good in math and I still remember the agonizing steps.

I spend the next two hours trying to coax her into the basics needed to get to where her classmates are, while she screams and thrashes around on the floor.

Snapshot:

I have to get to physical therapy as soon as I get the kids off to school in the morning. I prepared extra well the night before, so all I have to do is slip snacks and water bottles into their backpacks.

The nine-year-old insists on wearing leggings with half a dozen holes in them and a halter top even though it froze last night and the forecast is chilly. I know the judgement I’ll get and I force a long-sleeved shirt on over her halter top, even though I know she’ll just take it off. I can’t physically get the halter top off of her with out injury to one or both of us.

She starts screaming ten minutes before it is time to leave for school and she continues well past the time they usually leave. I let the seven-year-old go on his own. She seizes a log off of the woodpile and hurls it against the glass back door of the house. The glass doesn’t break but I doubt it can take much more.

I open the door a crack and tell her to stop hitting the glass and go to school. She grabs a longer piece and tries to strike me with it. I close the door and it lands against the door jamb. I open it a crack again and tell her that every time she hits the door she will lose a day of television privileges. We’ve been through this before.

I count fifteen strikes of logs against the glass before I leave by the other door, locking it behind me. She comes raging around the house, screaming at me.

She still has some nervousness about getting in trouble with her teacher. I tell her that she will be late for school at this point but if she goes right away she will not get in big trouble. It makes no difference. She continues to rage and scream, her face covered with snot and her hair stringy at the sides.

There is no waiting it out. I either have to leave or I will miss an appointment that took six months to get. The irritated doctor, who didn’t believe me the last time I postponed an appointment, might not even allow me to get another.

Snapshot

I whisper “Good morning” into the children’s ears as the first streaks of dawn make silver in the east. They need time to get up slowly. Given that they have to walk to school because I can’t drive, we rise pretty early here.

I turn on lights, scratch and rub backs, exchange a few words with the seven-year-old and smile noncommittally at the pretend baby talk of the nine-year-old while I give her a reassuring hug and kiss. Then I go down stairs to get snacks and vitamin supplements ready.

“She’s in Papa’s room messing with his office!” the seven-year-old calls down a few minutes later.

Yesterday, she climbed up on the stove to get candy out of the stash on the shelf just below the ceiling and then refused to eat any dinner because she already had her sugar fix. She took non-washable dye and hid it in her room when I did an art project with her and then lied when I was looking for it. She got into my room and made off with my phone and my scissors.

I have to go to physical therapy again this morning. In a flash, I am so angry I can’t think straight.

I run up the stairs and pull her away from my husband’s desk, where she is rummaging. I take her downstairs and my voice cracks with strain as I demand that she tell me what she was doing, what she had taken or what she was looking to take. I am pretty sure it is either sweets, money to buy sweets or something electronic she wants to distract with at school.

She refuses to say, as usual. She doesn’t tell the truth anymore the way she once did. It is hard to blame her, since she often gets in trouble and now is often accused of fibbing.

My voice cracks and I start yelling, shattering the peace of the pink-tinged morning. My voice is hoarse and scratchy for the rest of the day and I feel like a bad parent for ruining the morning for everyone.

I am too tired, too worn out. I am sick and tired of lies and commercial demands and unkindness.

Judgement:

“You just have to give her some positive reinforcement.”

“Well, you know ADHD doesn’t really exist. It’s just something they say to excuse lazy parenting.”

“I know what it’s like. My kids are all really active. They’re great in sports. You should get her playing sports.”

“It’s about diet. I’ll bet you always eat out at McDonald’s”

“I’m sure it isn’t really that bad. And she’ll probably be a genius in art or something.”

These are all real statements that people have said to me in just the past month. Neuro-diversity is terribly complex and you’ll never find another child exactly like mine. Some neuro-diverse children are exactly the opposite. There is no way that most people can truly understand people with hidden disabilities.

But there is one thing that everyone should know that would actually help neuro-diverse people and their families. That is that hidden disabilities are real and they are very difficult to deal with. Assume you don’t know.

And don’t judge.

My child and my whole family eats a more healthful and careful diet than 90 percent of the population today. My child gets lots of exercise, taking multiple aerobic dance classes, walking too and from school and bouncing a giant trampoline most afternoons. It isn’t “all in the diet” or “lack of exercise.”

It’s a disability. It exists and it appears from the outside like a very bad, very spoiled child. Our walls are covered with more reward charts than any household I’ve ever seen. I have studied and tried dozens of strategies and parenting styles.

Most work fine with my seven-year-old. He is known for being a very active and even a “wild” boy but he doesn’t have ADHD. None of the parenting techniques actually “work” with my nine-year-old. A few help a little.

i used to think I could tell if a child was being parented well by observation. I now know that I can’t. I wish I had been able to learn to be less judgmental in an easier fashion.

Exclusion: The abled-privilege knapsack

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

You too are wearing an invisible knapsack. 

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

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

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

Creative Commons image by Woodleywonderworks

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

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

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

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

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

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

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

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

Creative Commons image by Honza Soukup

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But that trust has been misplaced. 

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

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

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

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

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

Strike a blow against bureaucracy: Freedom for multicultural names in the Czech Republic

My path to parenthood was a rocky one, slogging through infertility, an Eastern European adoption system and the judgments of many who felt a blind person shouldn't parent in the first place.

As well as those large boulders, there were some small, sharp stones on that road, not barriers but merely unpleasant jabs to endure. These were, for instance, lectures from bureaucrats about how wrong I was--wrong to think I could parent, wrong to adopt, wrong to accept children of another ethnicity, wrong in naming my child...

Creative Commons image by Jason Pratt

That last was one of the final rocks in my shoes, but one that I knew about from the beginning. I had heard rumors about the Czech Republic's name czar, an elderly linguist with the antiquated opinions of the 19th century. 

You see the Czech Republic has a name calendar. Each day of the year has been given a name, sometimes two. These were originally the feast days of saints and the custom dates to a time when immigrants were few and knowledge of the world beyond the little valley of Bohemia and the hills of Moravia was very limited.

Name days are still celebrated by many in the Czech Republic. Friends and family members give flowers, cards, chocolate and alcohol to those named after the saint in the calendar. As a result, being given a name that isn't on the calendar could represent a distinct denial of small gifts. 

This may have been one of the motivations for appointing a linguistics expert to control all foreign and uncommon names given in the country. Another reason given was to prevent people from having to correct the spelling and pronunciation of others.

I will admit that there are some small perks to this rigid naming system, once you have learned to pronounce all 365 or so names--no small feat with names like Zbyněk, Wilhelmina, Břetislav, Otýlie and Zdesislava--just to name a few. If you are ever called upon to pronounce another person's name without help, you theoretically have no problem. 

But the most commonly cited reason is the fear that classmates will ridicule a child with an uncommon name. Those who wished to give their child a common foreign name like Doug had to apply for a permit, while one could cheerfully and freely name a child Bonifác--one extremely rare Czech name that sounds just as ridicule-prone in Czech as it does in English, but which—none the less—gets a day on the calendar (May 14 to be exact).

That's why when I went to name each of my kids and didn't want to choose either the 30-odd actually used names on the Czech calendar--which results in my children's classes having only three names to share between eight girls and the like--or any of the ridiculous ones not in general use, I had to approach the name czar with polite pleas of supplication and suffer through one last lecture about my wrongness. 

The name czar warned me that my children, named Shaye and Marik, would suffer terribly in school because of their odd foreign names. In both instances, the name czar originally denied my request and I had to document the common use of the names in other countries.

Beyond the fairly popular English name "Shaye", "Marik" is a Slovak variant of the common Czech Marek and it saves my son from sharing his name completely with two other kids in his year. But the name czar did not like my choices.

Exhausted from years of this kind of ordeal in the adoption process and still unsure whether or not the authorities could revoke our children if we were too disobedient, my husband and I bowed our heads, produced all the needed paperwork and stuck to fairly standard names even when applying for something different.

But not everyone is such a lightweight, thankfully. Another mixed couple--an American of Native American Indian background and her Czech husband--won their two-year court battle with the name czar this past summer. They had to go all the way to the Czech Constitutional Court, the highest court in the land.

Tthe court struck down the name czar and the power to intimidate and harass families of diverse cultures. The court decreed that the law says only that parents must provide documentation, such as a mention on a baby-names website or another registry of names or evidence that a name has been used in the past. Upon the filing of this documentation with a county clerk, the parents’ name choice will be automatically accepted. 

My children are well into their school years with their mildly unusual names and they don't report any major difficulties. My daughter has mentioned that mean boys will occasionally chant bastardized versions of her name, but they do it to all the girls. She is mildly dismayed that her name rhymes with so many things because this gives the boys a bit more fodder.

Still she is strong-willed and does not want to use her bland second name Hana (mostly given to her to ensure that she would not miss out on name-day treats).

My son, on the other hand, is slightly sad that his does not rhyme with anything in English or even that much in Czech. I have had to correct officials a few times when they heard his name and assumed it was the more common Marek, instead of Marik, but my son is happy with is little bit of uniqueness and that is what matters in the long run.

I am relieved to hear of this small victory for common sense over bureaucracy and grateful to those who fought the long fight in court.  

Reality check: There but for a last-minute cancellation go I

Last week twenty-six-year-old Reality Winner was sentenced to five years in prison for leaking a classified document to the press.

The document in question--the nature of which was tellingly left out of the official criminal case against her and out of most media coverage--was a report on an NSA investigation into specific actions of the Russian government aimed at influencing the 2016 election in the United States.

Let's get one thing straight right off the bat here. Russia and the United States have been meddling in each other's elections for half a century--at the very least. This is not earth-shattering news to people in intelligence and media circles. 

The thing about this particular document is that the report was warranted, but it was being suppressed. Essentially, you have a report saying that the Russians hacked into voting systems to influence the election in favor of Donald Trump, who then won and has since fired or threatened to fire multiple persons involved in investigations of the meddling. 

So, this young woman is going to prison for leaking a report that was being suppressed for clearly corrupt and unethical reasons. It was a timely and necessary warning of danger to the nation. 

People look at the baby-faced pictures of this pretty young woman and some say she's a traitor who broke the necessary code of secrecy she swore to. Others see a hero who put her life on the line to protect her country and is now willing to pay the price, even if it is unjust. 

I just see a young woman who could so easily have been me. And my stomach seizes up. 

May 1998

The phone on my dorm-room desk rang. When I answered a man's voice was on the line. He gave a name but it went right out of my head when he said the next words "from the CIA."

A thrill of adrenaline shot through me and intensified as he continued to speak. Yes, it was that CIA and he specifically wanted to talk to me, a senior in linguistics at a small university in the Midwest known for only one thing of note--having been a quiet training ground for intelligence operatives during the Cold War. 

I'd heard the stories from our old professor, a former CIA agent himself. The students in our tiny Old Church Slavonic classes loved it when he tossed the xeroxed grammar pages, lit a cigarette and proclaimed that today he'd tell stories about adventures in the old Soviet Union instead. 

But that was all in fun. This was the late 90's, and no one knew that the Cold War was over better than we did. 

And yet, the CIA was calling me. 

Creative Commons image by Jamie of Flickr.com

I wasn't fooled the year before when our professors told us we would now be studying Arabic in the Slavic linguistics department and it would be marked down vaguely as "a Slavic language" on our transcripts.

I snickered with my fellow students. Oh, how secret it all was. 

None of us was planning to work for intelligence or national security agencies as far as I knew. Least of all me. 

I was politically progressive, a scholarship kid from the backwoods of Eastern Oregon. I planned to go into journalism, travel Eastern Europe and write gritty magazine stories about social justice and war. I didn't care that such jobs don't pay. I was in it for the adventure.

And a discussion with a CIA recruiter was just that to my twenty-two-year-old self--an adventure. 

So, I'll admit that I led him on a little. He wanted to meet me at a Chicago job fair I had signed up for because Reuters was scheduled to be there. Thinking it might be an interesting experience, I agreed to stop by the CIA booth--though it was hilarious news to me that they had such a thing. 

The next day the DIA called. 

The Defense Intelligence Agency is a less famous cousin of the CIA. Most lay people don't realize it but there are more than a dozen US intelligence agencies. 

A few days after that Reuters cancelled. 

The trip to Chicago for the job fair would cost me about $70 and as I mentioned I was a scholarship kid. Before I came to that university four years earlier I hadn't even held that much money in my hand at one time. So, fun as it might have been, without a real reason to go, I cancelled too.

And the CIA--and the DIA--called again... and again. By this time the adrenaline was no longer fun. There was some gentle recruiting pressure. They each offered to pay for my trip. I'd heard of people being trapped by recruiters back home, where several of my peers had taken the military route out of poverty. 

My tune changed abruptly and I told them simply and in no uncertain terms that I wasn't interested and that I was going into journalism.

In one last-ditch effort the CIA recruiter said, "We have plenty of journalists working for us."

My hand was shaking. Yes, I knew they did even then.

And I would come to bitterly resent that fact when I did become an international journalist. Once I was kicked off of a bus on a remote and freezing mountain road in South America because someone suspected I might be just such a CIA agent mascarading as a journalist and a reporter friend was killed in Afghanistan on similar suspicion. 

I didn't go to Chicago and while I did learn to get along quite well with some intelligence people as sources once i was an reporter with a wide variety of contacts, I never went down that road.

2018

But Reality Winner did. She too was a thinker and a linguistics student. I can't know her reasons but her published comments lead me to believe that national security work wasn't always her plan. In media interviews her family sounds hauntingly like mine. 

Even her name, which may sound odd to many people, reminds me of my roots. My middle name is Meadowlark. One brother is Forest and the other is Skye. We had that kind of parents too. 

And I know one thing without a doubt. If I had taken that road and if I had come across such clearly damning evidence of corruption and crime threatening the very bedrock of our democracy, I certainly hope I would have done something about it. 

It could so easily have been me in those fetters and it could easily have been my mother holding back tears on the news. 

When "no politics" isn't neutral

Imagine if a miraculous alien was suddenly transported into our polite, neighborly conversations, to our dinner tables or into our schools, workplaces and places of faith. The alien is miraculous because it can speak English perfectly and can physically participate in our activities without much difference.

The alien wishes to be polite and diplomatic, so it observes table manners and learns to say "please" and "thank you," but its understanding of social niceties is limited. Imagine then that you are appointed as a cultural ambassador charged with guiding the guest through our world.

And because it is 2018, people ask you to above all else avoid involving the alien in the contentious politics of the times. We want to give the alien a good impression of earth's development and human society after all. 

But unfortunately for you, the alien is very observant. First, you offer the alien something to eat and the alien asks what the dish served is. 

Creative Commons image by Fibonacci Blu

"Chicken," you reply.

"Ah, an animal," the alien says, tasting politely. "You humans eat these animals. It's the way your world works."

"Many people eat only plants," you say, feeling a bit uncomfortable. The other guests at dinner also look disturbed. "Would you prefer something vegetarian?"

And someone mutters. "Getting political already." 

The alien raises its equivalent of an eyebrow at you. "Oh, do some humans think it is better to eat plants than animals? Did you ask the plants how they feel about it?"

Someone mentions factory farming and the alien checks its research about earth.

"Oh dear, you're quite right," it remarks. "Factory farming is one of the things killing your planet. Those greenhouse emissions are causing wild fluctuations in your atmosphere. If you don't stop this type of agriculture and your use of fossil fuels, you'll be hard pressed to grow any food in a few decades. I hope those of you here are among the humans who don't contribute to such devastation."

Everyone stares at the alien and then down at their plates. The politicization of lunch isn't welcome.

After lunch you are ready to show the alien around. You go out to get into your car but the alien stops, staring at the vehicle. "Is there no other way to get there? Can't we walk or take one of your trains? This vehicle is contributing to the devastation of your planet."

The rest of the human delegation grumbles. More politics. 

Somehow you persuade the alien to get into the car and you drive to a local high school. At this point the alien needs to go to the bathroom. They do that on their planet too, apparently. So you take the alien to the restrooms. But of course, there are two restrooms. 

"Can I just use whichever one I want?" the alien asks. 

"No!" you reach out a hand urgently to stop the alien. It is your job to keep the alien out of controversy after all and this is a school. There are few places where people are more concerned about gender separation at the toilet bowl. You explain about human gender, a bit about reproduction and that the bathrooms are segregated.

"Oh dear," the alien mutters. "Do you do reproduction in restrooms? Is it necessary to keep the young ones apart to prevent premature reproduction?"

"No no," you explain. "It just makes humans uncomfortable to share a restroom with the opposite gender. So, which are you? Female or male? Do  you... er... grow the babies or fertilize the babies on your world?"

"Both," the alien replies. "We are a species with both of those parts in one individual."

It's hopelessly political to get your alien to the toilet, but you manage it (possibly by clearing everyone out of one of the bathrooms and declaring it temporarily genderfree). 

The alien then follows you into a classroom and sits quietly for a while, listening to the teacher talk about the ten most important authors of the past century. When the teacher opens the class up for questions, the alien raises its hand (or equivalent appendage) and asks how the teacher determined that those were the most important authors of the previous century. 

The teacher points to history books, popularity, cultural impacts and the wealth and fame of the authors. She is proud to point out that the list of ten authors includes one author of color and two women. 

"But I just learned that your female gender makes up half of the population. Are they mostly too busy growing babies to write?" the alien asks innocently. 

The teacher explains about historical inequalities and claims that we are now much more equal. She lists several more well-known female authors, though the alien is confused about why half of them use male pen names. 

Then the alien asks why only one of the authors on the list is a person of color. The teacher tries the same method of explanation, but the alien stops her. "The vast majority of your planet is populated by people of color. Surely, they wrote things, even if you didn't know about it at the time."

The teacher explains about borders and nations and says that while she didn't actually say it, she meant this was a list of the most important authors from your country and... er... well, your allies, which are mostly white.

"Is this why you put so much of your resources into war and killing the humans on other parts of your planet?" the alien asks. 

The teacher glares at you and the alien and states sternly that this is a discussion of literature, not politics, and you need to take your political rants elsewhere. 

You leave school and head toward your workplace. On the way, the alien seeks to clarify its understanding. "These divisions are very important on your planet, I see. You divide people up into two genders and you have all these lines on the ground that divide people and it is very important what color your epidermis is. Why is this? Do different kinds of humans need very different things or have very different abilities?"

"No," you admit. "We don't. But people used to think that we were very different. We now know that we aren't. But some of the divisions remain."

"Even you were concerned about which restroom I should use," the alien says. "So you have not abandoned the divisions."

"That's true," you say. "I was trying not to get political."

"So, keeping one gender out of the other restroom is not political?" the alien asks. "And keeping hungry and endangered humans on the other side of a border is not political and letting them in would be? Bombing other humans is not political but talking about it is? Killing and eating either plants or animals isn't political but talking about it is? And killing your planet isn't political, but mentioning it is?"

"Yes, you're getting the idea," you sigh, already exhausted. 

"You humans don't like it when something is about power or politics. I can tell that," the alien says. "I really want to be polite. How can I avoid political topics when it seems like they crop up everywhere?" 

"You probably should avoid criticizing what we do," you mention hopefully.

The alien nods. This is good diplomatic advice.

At your workplace, you show the alien how the company you work for functions, all of the different jobs and you get into economics and how people work for money in order to then buy those things they need to survive.

The alien is quiet during a lot of this. Finally, it nods and does its equivalent of a smile. "I think I see now. You divide people into these groups by color and nation and gender, so that you know that mostly brown humans should do the hard jobs that get paid very little. Then they can pay to live in places that are broken, polluted and unsafe and eat food treated with chemicals that are destroying your planet. Some paler humans are also doing these hard jobs and living in these unsafe areas too and that causes a lot of strife. I can see now why you try to pay attention to the divisions."

Your colleagues stare at the alien with open-mouthed shock.

The alien continues. "I see that the pale females can do very busy jobs that get paid a bit more than the hard jobs. They are also close to the pale males, so that they can provide pleasure to the males.. Mostly the pale males make much more money and they do jobs that you feel are very important, but they mostly consist of sitting and telling the brown and female humans what to do."

Your superior who asked you to keep the alien out of politics gives you a meaningful glower.

You gently take the alien by something like a shoulder and move away from your colleagues. "I told you not to criticize us," you say with some irritation.

"I wasn't criticizing," the alien says, with a bewildered look in it's ocular nodes. "I was just checking to see that I understand these important realities of your world. I wouldn't want to wander into the wrong restroom or job."

"All right, whatever," you say. "Let's go someplace even you can't make political." 

You take the alien to your community of faith. You belong to a spiritual path that is very tolerant, open-minded and apolitical. Surely, the alien can't find anything to criticize here. 

You walk in and you are greeted by many different kinds of people. Everyone is friendly and loves meeting the alien. They all exchange pleasantries. It's true that mostly the white people are in the center of the room, talking loudly. People of color are there though. They are happy and fairly quiet. The leadership is shared between women and men. The female spiritual leader even does a lot of the talking, while the male leader sits, looking dignified. 

The only person who cannot come in is your friend who uses a wheelchair, but several of the people in your faith community visit him at home. And there is a blind woman who sits at the back of the space. She is included by being there and she is well liked because she mostly smiles quietly.

You listen to an uplifting service about divine love and acceptance, about hope and reassurance for your purpose in life. What a relief! You are glad you came. 

You look around to see how your alien friend liked this apolitical inspiration. The alien is doing the equivalent of putting its head in its hands and sobbing. 

"I thought you said you didn't like being political!" the alien cries.

"This wasn't political. It wasn't about who is in power and who isn't," you explain. "This is a place where we find hope and peace." 

"You find hope by continuing to destroy your planet at an alarming rate without mentioning it? You find peace by enforcing silence about the divisions and inequities in your daily lives?" The alien looks utterly confused. "This is all about power and politics."

---

There are infinite variations of what might happen in that scenario with the miraculous alien. But the bottom line is that what we consider to be political is all about who and what has the power to destroy or gain in our world. That is the heart of politics. 

To stay silent on the most pressing issues of today, the divisions, injustices and destruction in our world is a brazenly political act. It is an open declaration of support for the existing divisions and the ongoing injustices and destruction. 

Many institutions and groups today say they want members to refrain from bringing politics into the group or activity to avoid strife. Whether this is done in a community of faith, a school or other institution or a commercial enterprise, it is not politically neutral. Instead it is a declaration of a political position protecting the status quo. 

Due to toxic rhetoric and events, many of us are exhausted. And this leads to many well-meaning calls for certain spaces to be apolitical, places where injustice, race-relations, environmental problems, human rights issues and war won't be discussed. These topics are stressful and painful for a lot of us.

The problem is that silence is not "neutral." And in fact there is often no "neutral." When the lives of vulnerable refugees, black boys on the streets or any other people are at stake and one side is engaged in killing them and another side is trying to stop the killing, there is no such thing as "neutral." You either defend those being harmed or you are supporting the injustice.

Likewise when one group is being publicly maligned and trashed because of characteristics they could not choose for themselves and that group is either absent or not strong enough to respond, there are no bystanders. 

There is no neutral. If I do not speak up I become part of the bullying and so I have sometimes spoken up in spaces declared apolitical because to remain silent would be a political act. 

I'll stand with you: Equal access to health care for LGBTQ parents

Last month, the Spanish government announced that restrictions barring lesbians, singles and couples in which one member is transgender from fertility treatments under public health insurance programs have been rescinded. Although for most people even in Spain that news may herald only a minor change, I know from experience that for those it does affect personally, it is life changing and fraught with powerful emotions. 

A Spanish gentleman posted an article about the announcement to an American progressive group I frequent. Instead of the passing support I would expect from progressives, the post was attacked by some members of the progressive group, ostensibly because some people objected to fertility treatments in general. They made no overt mention of the LGBTQ rights aspect of the new law, but simply opposed it because it constituted an expansion of medical fertility treatments, which they see as unethical.

I was confused at first. I can understand that some extreme religious types might object to treatments like IVF as "playing god" or something of the like. But I couldn't fathom what progressives would find wrong with it. 

Creative Commons image by Niklas Montelius

Adoption, apparently.

The naysayers were convinced that those who can't otherwise have children are selfish to pursue IVF. They should adopt "the numerous children waiting in orphanages."

The terms of shame employed against transgender people and lesbians who pursue fertility treatments were "selfish," "unethical" and even "stupid." These "progressives" hadn't voiced a problem with fertility treatments for straight people, married couples or for the wealthy who can afford them without insurance. But they felt some people should "just adopt."

The tirade of shame for people struggling with infertility brought it all back.

I woke up disoriented and pinned on my back in a dark room. Tubes and wires were attached to me from either side. I couldn't sit up or even roll over, so I couldn't see anything except distant lights and the lumps of people lying on beds on either side of me. The sound of a steady electronic beeping was interspersed with shrieking laughter.

Vomit rose in my throat and I fought it back. It would be terrible to throw up while immobilized on my back. Slowly I pieced together what had happened. After my first harrowing IVF treatment was successful, I was pregnant for nine weeks. Then a routine check-up resulted in a frantic dash for the hospital. Something was wrong and I was told that I would have a miscarriage, one that would be dangerous and bloody if I didn't go in for surgery. I had gone, filled with grief and despair. 

And I woke up here in the dark and with no way to escape either the physical pain or the gaping loss.

I had been promised that it would be quick and I could go home with my husband afterward. But instead I was in pinned down, it appeared to be night and my husband was gone.

The pain came to me slowly. Dull pain in my womb and sharp pain in my throat. Finally, the shrieking laughter materialized into a gaggle of night nurses, barely old enough to be out of high school, from what I could tell, let alone nursing school. They told me I was in the ICU. Something had gone wrong.

Well, more wrong than it already had been. So I was stuck there, and no, they wouldn't give me anything for the pain.

I survived that night, the longest and worst hours of my life so far (let it stay that way, please). And it was only the beginning of the years of misery and despair in which I fought the monster of infertility because my body and soul needed a child, needed more than just me and my husband and my distant childhood family as "family." 

All in all, I spent six years in infertility, three of them in various stages of IVF. They were some of the loneliest and most painful years of my life. I was geographically cut off from my family and most of my close friends. When I did visit family and friends and made any mention of the all-consuming medical struggle my husband and I were undergoing, I was often met with silence and quick changes of topic. While I could think of nothing else, most people, unsurprisingly, had a lot of other things on their minds.

Never having thought much about it before it happened to me, I was surprised to learn that the topic of infertility makes most people very uncomfortable. It is a medical issue and the subject of genitalia seems too close for easy conversation. Infertility is a misfortune and it may make those who didn't struggle with it feel inexplicably guilty.

But more than any of that, I discovered, many people who have never been faced with the problem themselves feel that those who can't easily have children should do their part to mitigate the human population surplus by gracefully accepting their fate. Someone has to make the sacrifice after all and it's easier to contemplate if that someone is someone else.

To make it even lonelier, IVF is not as simple and painless as it is often described in the media. It is a long and arduous process involving hormone therapies that cause exhaustion and often debilitating mood swings, self-inflicted injections, followed by surgery, extremely precise schedules and many trips to distant medical clinics.

Even when it is "covered" by insurance in countries with universal health care the co-pays are steep and where it isn't covered by insurance tales of mortgages and eventually lost homes are frighteningly normal. Finally, IVF and other fertility treatments often entail enduring exaggerated symptoms of early pregnancy and then miscarriage... repeatedly. 

And that says nothing about the wrenching emotional and psychological process of desperate hope, almost always followed by at least a few devastating losses. 

In some places there are support groups for those undergoing these difficult experiences, but in our area there wasn't anything like that. That made the discomfort of my friends and family around the topic hard to bear, even though I knew that my focus on IVF verged on obsession. I tried not to go on about it, but I couldn't help thinking about it every waking moment.

Even among those who were also struggling with infertility I found a lot of silence and reticence to share. I knew three other couples dealing with infertility at the same time. But two of them found the topic too painful and private and wouldn't either talk about it themselves or listen to my struggles. The one couple I could talk to lived several hours away and we saw them rarely but gladly. 

Their conversation and mutually supportive hugs were a light in a long and painful darkness. The one topic that these friends wouldn't discuss was the diagnosis of their infertility. It's a sensitive subject for many, so my husband and I didn't press them. But one day over lunch at our house, my friend--who had been my colleague as well for five years--turned to me and revealed the truth. One half of the couple was transgender, making normal procreation impossible. 

My friends struggled under the same conditions of IVF that my husband and I did, the same forced silence, the same pain and fear and loss. And to add to that they faced the warranted anxiety that this hidden fact might bring down harsh judgment on them, even from those people who shared their struggle.

I will admit that I was astounded by the revelation. Transgender identity was another thing I had never spent much time thinking about or had any close experience with. My friends were so utterly normal that they broke all the stereotypes I had acquired from the media with that simple declaration. And once all secrets were on the table, our friendship was closer than ever.

My husband and I eventually lost that struggle to have a biological child, though our friends succeeded. We went on to adopt children from a local orphanage. The people engaged in shaming others for struggling against infertility might well have been gratified by us.

But they clearly don't know the reality of adoption in today's world. "The numerous children" waiting to be adopted in the United States where those voices hailed from are either not legally cleared for adoption or they are overwhelmingly older or carry with them costly medical issues. 

I would love for all children without families to be adopted but only into families prepared for them. Older children in the adoption system invariably have complex psychological and emotional needs. People battling their own medical problems and deep losses of dead babies are not the ideal candidates to provide the unconditional nurturing and rock-solid safe homes that those children need and deserve. Such families are also often not equipped to deal with children with extensive medical needs.

Pursuing fertility treatments instead of adoption is neither selfish nor unethical in any other way. In fact, if you do adopt, as my husband and I did, there will be those who will point accusing fingers at you and scream those same words of shame because you adopted.

Just as my husband and I tried to do the right thing in seeking medical help for our difficulties, we made every effort to navigate the adoption system ethically. We went through official channels and waited patiently to be assigned a child in need. We did not pay massive amounts of money to be able to make the choices ourselves. This is no doubt what the shamers and blamers think they would support. 

In the end, we adopted two children--one with complex disabilities and one who came to us after being drugged and neglected in a poorly run orphanage for ten months, who screamed in terror almost without ceasing for the first year. It has been and continues to be a rugged road to family. And yet, there are those who would shame us still. 

Our children needed homes and families primarily because of structural racism and discrimination in the country where we live. Neither of them were true orphans with dead parents. Almost none in the adoption system are.

They came from families facing a vicious system of employment, educational and housing discrimination, who then could not care for their child because of desperate circumstances. Those families sent their children into the adoption system in the hope that their loss and agony might result in their children having a better future. And so, finally we built our family on the ashes left by structural racism and egregious social injustice. Such is our supposedly morally superior path. 

But the fact was that these children were alone and abused in a terrible situation. Not taking them would not have resulted in the salvation of their birth families or communities. And after picking up the shards of our lives shattered by infertility, we felt we had the strength to do this. 

Those who never faced such choices, such pain or deep despair, will judge. But our friends who went through IVF with us, just invite us to stay and our kids build forts together in the construction materials for their new house.

Oddly enough, another friend, this time a single lesbian woman also went through IVF though not at the same time as us. And of the many friends who have appeared and drifted away, these two families are two that stayed in our circle without judgment and linked to us by bonds of solidarity and hope.

That is why I didn't let the issue lie when the tirade broke out shaming transgender people and lesbians in distant Spain. Some people did ask me why I went to the mat over that obscure issue so fiercely. I am not transgender or lesbian and I adopted children. The comments were theoretically praising me. 

But there is one point of honor and ethics that I hold higher than any other. I will always stand up for those who stood by me in hard times. If there is ever need, LGBTQ people will not stand alone, not in this or in any other defense of equal rights.

Do the blind understand what the sighted see?

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

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

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

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

Creative Commons image by Neticola Sny

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Creative Commons image by Mike Behnken

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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