Gaslighting the whole world

A friend asked if it’s possible that Putin really doesn’t know what he’s doing in Ukraine and how badly things are going for his troops. He has the internet. He and his advisors have always been world-savvy. How can he just not care that everyone sees his crimes?

Well, now. That’s quite an interesting question.

I know Russia fairly well. I can predict how Putin’s restrictions will play out. Russia is still a country with inadequate access to media and information for most people. It’s also a country with a lot of tradition around the symbol of a strong leader/national father figure.

So, in short, at home he can put it over on a lot of people. Not all of them anymore, hence the brave members of the Russian intellectual and professional classes who have protested once and then been silenced. I root for them, but unless enough of Putin’s closest friends feel the same way, little is likely to change his thinking.

But beyond knowing Russia, I know his "type" all too well.

Putin has a double, you see. Not a physical double in this case, but a psychological double… in my life.

This is a person who is highly intelligent, immensely arrogant, physically self-controlled, consumed with inner anger and contempt for others as well as utterly convinced of his own righteousness. Both Putin and his psychological double in my life have at times claimed their crusade is about spiritual and moral purity. They also both show signs of a kind of hyper-masculine fragility.

Both regularly accuse others of the actions they have either just committed or are about to commit. Both insist that any casualties of their actions are the fault of those they are attacking. Both appear to be immune to all attempts at diplomacy or discussion.

I am sure I’m not the only one with a Putin double handy, but mine has been copying Putin in real time. This is a family member who has been waging a decade-long campaign to tear me down as a parent, much as Putin has nursed his personal grudge against Ukraine for years. First, when my kids were babies, it was always, “She can’t possibly be safe with kids when she’s visually impaired.”

Photo of a room reduced to rubble. Through the wreckage of a smashed television set, we see a gas mask amid other debris. -Image via Pixabay

Sometimes it was stated openly to discredit me in front of others. Other times it was a quiet jibe for my ears only, but in hopes that I would react and bring down the criticism of others for tainting a family get-together with drama.

It would have been irritating enough if this person’s opinion were just an opinion. As it was, it meant that my kids and I were more isolated from the rest of the family because unlike other parents, I was “never to be left alone with anyone else’s kid.”

Need I say it? But ok, nope, I didn’t have close calls in the safety arena. I fished an infant nephew out of a swimming pool before anyone else could react. I prevented a number of possible accidents involving babies and batteries, which I heard clattering in just that particular way that only batteries clatter. My kids were all-in-all physically safer than their cousins and even when I wasn’t allowed to babysit, I still managed to be handy in a few crises.

Then, when that outright falsehood wasn’t as easy to pull over on the rest of the family, the campaign switched to my “overly rigid” parenting methods. As you might already know, my kids were both adopted from Eastern European orphanages and had trauma and health issues as baggage. I went at parenting much the way I go about most things—with research first, exacting planning and then enthusiastic implementation.

I usually had one or two “attachment parenting” books under my arms in the early years and when doctors said, “Routine is so very important to children who have experienced attachment trauma.” I didn’t just blow it off. I first made a plan for meals and bedtimes and stuck to it. I also noticed the chaos that happened when I occasionally didn’t.

The long and the short of it was that both of my kids needed a lot of structure, routine and cushion to be emotionally regulated and healthy. So, there were a lot of family arguments when I insisted I needed to leave an event in time for my kids to be only one hour late for bedtime rather than four hours late, as other parents found acceptable. Or when I insisted that massive doughnuts at 5:30 pm are not a good idea, since I was giving them dinner at 6 no matter how inconvenient it might be.

And yeah, I insisted they not have sweets right before real food. I didn’t just mouth it. I meant it.

This Putin double was always criticizing and rallying others to blame me and my parenting choices for any difficulties.

Well, once my kids got older and my daughter was diagnosed with severe ADHD and a neuro-developmental disability as well as attachment trauma, there was extra fodder for the cannons. Suddenly, the Putin double went from someone who quoted studies to a science denier on child development.

“There is no dis-ability. Arie is pathologizing her kids. There is trauma behind these kids’ terrible behaviors to be sure. Trauma she created through bad parenting.” That is a lot more concise than the lengthy, berating, yelling lectures this Putin double regularly delivered, but it uses all the key words and phrases.

When asked what exactly caused this “trauma” or what was the “bad parenting,” I’m told it is things like “using the wrong tone” or “not setting enough limits” or “making an assumption.” Because the internet is full of a blame and shame culture, it’s dangerous to repeat this sludge, but I trust that even just reading about my parenting journey has given my readers some context for this.

Yeah, I’ve had my parenting moments. Who hasn’t? I guarantee you that no one parenting kids with attachment trauma and FASD can claim to have never used a harsh tone they regretted. When a neuro-diverse kid has an “executive functioning disability” as in this case, consequences and behavior modification methods don’t work the way they do with other kids.

A lot of consequences still happen anyway, but getting mad at the child because the standard methods don’t work on them isn’t really helpful. But there is no one I’ve ever met who can truly manage to never get mad when an otherwise reasonably healthy twelve-year-old colors on freshly painted walls again or throws a two-hour fit about brushing their teeth for the tenth night running.

But I digress… The heart of this post is about Putin and the kind of thinking that allows someone like my difficult family member to take things to open war “and devil take the civilian casualties.”

I guess the civilians in this case are the kids.

Putin spent the winter sending tanks crawling across Russian grasslands toward the Ukrainian border. His double spent the winter criticizing my tone of voice or yelling at me over conversations he misheard from the other room, since I’ve relocated back to his neck of the woods. Both were warned. Both claimed innocent intent.

“Just training exercises. We have a right to develop our defenses,” said Putin.

“I have a right to an opinion. I’m just giving valuable parenting advice,” his double said.

My eleven-year-old son who was adopted from an Eastern European orphanage had a hard time getting attached to our family when he was little. Hearing this constant criticism of his primary parent really confused him. He started repeating the same words, yelling at me, insisting he didn't have to follow any rules or do his homework because I am “bad at parenting.” Kids that age don’t generally use the word “parenting,” but they do repeat what they hear.

Then in February, Putin sent his troops storming into a sovereign country, a nation that had long thought of the Russians as their friends and called them “brothers.” They started bombing schools, hospitals and residential buildings as well as “legitimate” military targets, if such a term can be applied to an unprovoked war.

The Putin double near me started lecturing my easily manipulated neuro-diverse kids behind my back about how my parenting is “rediculous” when he took them and cousins on “fun” outings. He encouraged them to disregard any instructions I gave. He spoke of me and to me with contempt and hate. He yelled and demeaned me in front of the kids because I asked my son to look through a pile of cast off socks to pick out his.

The criticism, shouting and covert attacks on my children’s relationship with me was very much like bombardment. And while it didn’t kill, it wreaked havoc on my children’s psyches.

The world said “no” to Putin and demanded that he cease hostilities and stop wantonly killing civilians. Putin obfuscated, denied, twisted facts and blamed the victims of his aggression. He said the civilians were “human shields” because they had not left the war zone quickly enough. Then he closed humanitarian corridors for fleeing refugees, trapping them so that they could not escape. And when some did, his troops shot and bombed them.

Meanwhile, my family united to demand that Putin’s double stop the harassment. And the double obfuscated, denied, twisted facts and blamed the victims of his aggression. I supposedly wasn’t sensitive enough when my son said he didn’t want to sort socks. My kids’ have learning disabilities because I must not have used the right “behavior modification methods.” He had to step in because his conscience demanded he let “the truth” be known. If I said anything, he shouted over me, never allowing a word or phrase to be heard through the barrage.

And the children saw that a loud voice and a large, male body is what wins. They saw their mother shamed, treated with contempt and shouted down for no particular reason. And they learned from that. They learned what a mother is worth in this patriarchal world. They didn’t die, but they lost something immensely valuable as they repeated his words and screamed, “I hate you! I want a real mother! You’re disabled! You’re a bad parent!” for days after each family gathering with the Putin double.

As the weeks dragged on Putin accused Ukrainian forces of using chemical weapons. By now, many world leaders were savvy to his mind games and hazmat forces went on high alert. With no evidence that his accusations were anything but wind, another reason for those accusations was apparent. He was covering for and confusing the discussion about his own chemical attacks. And evidence of the use of white phosphorous by Russian troops has already emerged.

At the same time, Putin’s double fell in love with the word “abusive,” screaming the accusation at me over and over again. Allowing no word about actual events in edgewise. To confuse the discussion and to cover for his own abuse, the easiest angle is to accuse others of the actions he himself has committed.

Why do I belabor this point of comparing these two men?

Partly, it’s simply because they took their actions at the same time, and that made the comparison striking. I, like many who thought they knew Russia, was taken in for much of the winter by the insistence that while the criticism from Putin’s double was irritating and insulting, it was basically harmless, just an abhorrent and insulting opinion. Then, I got a rude awakening when my son started screaming hate at me, throwing objects and even pummeling me with his fists. We’ve already had to call the police twice to help him calm down and keep everyone safe, including him.

But more than that, with these two situations side by side in my life I can see them both more clearly. Putin’s actions are not just those of a war criminal. That is plenty bad, certainly. But it is important to understand that he is also gaslighting the whole world, engaging in a campaign of psychological warfare.

At the same time, every abuser who employs the tactics of gaslighting and psychological abuse is as dangerous to the people in their life as Putin is to the people fleeing his bombs. More than ever before, I have come to understand the pleas of organizations helping victims of domestic violence, asking that we take psychological abuse as seriously as physical abuse.

My family and I waited too long to act decisively. We are acting now. You need not fear for my children’s safety or call up an intervention on their behalf. But I see now that I didn’t act when I should have. As a result, my children suffered a retraumatization of the early terror they lived through when they were tiny infants in a faceless orphanage system.

I let an untenable situation go on too long, partly because I was distracted by volunteering to organize evacuations of refugees from Ukraine. I didn’t realize that while I was off putting out blazes, my own house was on fire.

I hope people hear me on this one. Please take psychological abuse seriously. If you are experiencing a barrage of verbal attacks, gaslighting, manipulation, twisting of facts, a campaign of denigration and contempt, these are classic signs. It can be very hard to take action when the relationship is close and there is often a cost of setting firm boundaries. We often love those who engage in this abuse and our children do as well.

If you see someone else under this kind of onslaught, I hope you will remember not only that but also how easily victims are blamed and issues are obfuscated by psychological abuse. There is often a sketchy narrative in which “both sides” are apparently guilty of misdeeds, but in reality, the misdeeds of one side far outweigh those of the other.

Putin alleged discrimination against the Russian-speaking minority in Ukraine and western support for right-wing groups to justify this war. There is some legitimacy to these claims. Still, while those may be concerns that need to be addressed, they are not war crimes that slaughter thousands upon thousands of people.

Putin’s double also accused me of raising my voice or being overly persistent in a rule with my kids. And for a time, my family was taken in by this and insisted that this was a conflict between two people who had both made mistakes. I even admitted that I had raised my voice and that it wasn’t good.

But finally, my family came to realize that the times I succumbed to frustration or exhaustion were a tiny fraction of my parenting, which has been almost entirely calm in the face of much difficulty, and even my worst parenting moments are not the kind of actions that create the type of internal trauma my children were acting out.

It is not easy to set limits on Putin’s double. For now, he has free rein at the extended family home and while he’s been asked to leave by the legal owners, no one is willing to force the issue in a way that could be traumatic for any of the kids, including his. For now, my kids may miss some family gatherings in order to be kept safe. We will have to find more things to do in our little basement apartment on weekends and we’ll miss the beauty of this spring in the mountains until Putin’s double either leaves or shows signs of working through his issues.

I only wish it was this easy to put limits on Putin, and despite the ordeal I’ve been through, I’m so grateful his double doesn’t have nuclear weapons.

Time for more war?

I’m still at my computer late at night. I shouldn’t be, but I am still here, because on the other side of the world there is a driver in a minivan in a city just west of the front lines in Ukraine, sitting with her phone, trying to get a signal from the struggling cell towers, praying for a map to guide her and her cargo—a family with a disabled child—out of the path of indiscriminate bombs and gunfire.

And I’m the one with that map.

How in the hell…? Well, life is weird. I was in Ukraine many years ago. I can read the maps. I can sort of understand the language. I was also in the Balkans during conflicts there. I was a journalist, but I was also known as “that one is good with a map.”

Image of the Carpathian mountains by https://www.flickr.com/photos/bortescristian/

There was the time when no one could get across the Macedonian front lines and somehow—visually impaired as I am—my eyes were drawn to a faint logging trail on the hiking map I was using to navigate our team around the war zone. It seemed to avoid all the hostile checkpoints and the shelling areas, though not quite all the sniper ranges.

We decided to try it and we got through, so that we could give reports on the situation—kids hiding in basements listening to blasts that rattled the windows—back to the Red Cross, humanitarian aid groups and the world at large.

That was twenty years ago, but as it turns out, I’m still good with a map. Or so my colleagues say in a network of volunteers trying to evacuate the most vulnerable people who don’t have their own cars from Ukrainian hotspots. There are kids hiding from bombs in basements again, and I’m stuck in La Grande, Oregon amid snow melt, muddy roads, preteen basketball games, family dental appointments and IEP meetings, but there are those who still want to call me back in.

That’s the part that floors me. Isn’t there someone with a paid job, who can do this ten times better than I can. “Nope,” says the guy I get orders from. He’s ex-military but he’s a volunteer too and on disability. Some of the other volunteers are civilian employees of the military, but they aren’t getting paid to do this. The US military is strictly hands-off, even when it comes to evacuating kids. The situation is that touchy.

For the past few days, we’ve been evacuating children in orphanages, families with small children, the sick, the disabled and the elderly, people who otherwise wouldn’t have gotten out. Our group has evacuated more than 500 independently and our maps have helped many others picked up by other organizations.

I don’t really have time for this, given that my life was already jammed with multiple health crises—mine and my kids’—as well as bureaucracy and trying to be a writer. That’s why I’m on it after my son is in bed.

And one last report is coming in... I watch in horror a video forwarded from Twitter, showing a bomb falling onto the bridge I was just about to guide that van across. The guy videoing nearly dropped his phone, the blast shook him so badly even hundreds of yards away. His voice is hoarse, in shock, “The bridge… the music place… hit.”

It’s heartbreaking. But I don’t have time to think about it. I am back to the map, scanning feverishly for another route. OK, that one. Yes, it goes by a military zone but it’s only an old training center, no buildings, unlikely to be a target. It’s the only way west left anyway. Send them that way.

I send it off. Pray. Think of the dim photo I’ve seen of some of the drivers in one of our minivans, smiling through exhaustion. Maybe the same one. Maybe a different one. Then I have to sleep, to force myself not to think about it any more.

I have been almost entirely absent on social media and in real life social situations. My friends ask why I don’t have much to say about Ukraine. They know I’ve been there. Don’t I care? Isn’t it terrible that Biden won’t impose a no-fly zone to protect the Ukrainians? Don’t I think it’s all about Putin going after the natural gas reserves in Dombas? Shouldn’t NATO be doing more to help?

I’ve always had an opinion because I have been a lot of places, know a lot of things first hand and research what I don’t know. And my first field was Eastern Europe.

But I’ve seen several of today’s top “experts” on Eastern Europe and Russia on TV admitting that we’re bamboozled. The “old Russia hands” as we used to call people who were supposed to know this stuff said Putin was just posturing. Before Feb. 24, if you’d asked me, I would have said the same. And we were disastrously wrong.

What is worse is that we’ve woken up to a geopolitical world that has shifted in fundamental ways. Our confidence is shaken and we have to recalculate most of our assumptions about the world.

The one thing we do know is that Russia has nukes, a lot of nukes. And yes, their tanks fall apart and their supply lines are in utter chaos. (This is actually something any old Russia hand could have told you ages ago. Russians even have phrase for that sort of thing, “That’s Russia!” delivered in a sarcastic/resigned tone.) But that does not mean all of their nukes will malfunction and their missiles seem to fly well enough, if not always straight.

Russia—the state structure that is—still has a lot of fight in it, a lot of corrupt flexibility and a lot of technical expertise, though often concentrated in certain places rather than spread out across general manufacturing. I like Russiasn in general and consider several to be good friends, but I have never had any doubt about the villainous nature of their authority figures or state bureaucracy.

Just as we thought Putin was posturing, we think—we hope—enough Russian officials are as worried about the prospect of nuclear war as we are that “they wouldn’t go that far.” But we’ve just been taught a hard lesson on what our speculations are worth after the bombs fall.

So, when asked I am much more likely to look troubled, shrug and say “for once I’m glad I’m not in charge.”

The Ukrainians have every reason and right to demand greater help from the west. The west, the US specifically, mucked around in Ukrainian politics, financed this or that party, supported western-leaning figures and nationalist groups. Now our diplomats put their palms forward and say, “Hey, we never promised anything.” But the promise was implied. It is even implied for anyone in all the wordage of UN documents on human rights and peace.

But the choices are stark. Putin has little left to lose. He will likely not survive, if his war fails. And he doesn’t strike me as the self-sacrificing type. I fear he’ll use chemical or nuclear weapons before he’ll allow his forces to lose. That would likely be inside Ukraine for now… likely… again the value of these speculations...

But while I would very much like to believe that the Russian operators with the actual physical means to either launch or not launch long-range nuclear weapons won’t go through with orders to use them, that’s one hell of a bet.

So, I don’t know what to tell our policy makers, except this: I’m a disabled person, living in a basement on disability and I’ve got two kids with special needs to take care of. And I’m now a “key component” in the urgent humanitarian effort to evacuate Ukrainian civilians from the war zone. That is ridiculous!

I’m badass and all—har har—but the people doing this should be paid and have the proper software and childcare and so forth.

Some people are clamoring for a bigger military budget, when our military can currently do diddly crap about the current situation, and there is nothing saying this will be the last time. At the same time, we have only minuscule humanitarian forces.

If we’d had a huge professional humanitarian corps—say funded a third as much as we fund our military (that would be incredibly huge)—ready to step in in crises, including doctors, drivers, administrators, IT support and yes, the occasional map analyst, we could have evacuated the Ukrainian population so fast Putin’s war would have been merely an infrastructure loss that we could have forced his cronies to pay off for years to come.

But we don’t. We have volunteers scrambling, disorganization, chaos and ad hoc efforts.

I know this is scary. (I’ve had nightmares about nuclear war too—like I had as a kid, for the first time in 30 years. I know. I know.) But please don’t be pulled into the same old cycle that goes nowhere. Beefing up the US military and filling the coffers of military contractors is not going to fix this or prevent the next one. The thing that can actually counter the nuclear threat is a humanitarian corps that has the strength and power of a military machine without the weapons.

Maybe some covert ops team will get in and neutralize the Russian capability for launching nuclear weapons. I hope they do, and that would be a good focus for military people. But that does not require all the gigantic hardware or even a fraction of the budget and personnel of the US military. That kind of operation requires focus, specialized skills, people who not only know languages but know the cultures intimately.

So, increase spending on that kind of thing? Sure.

But that’s a long shot and it might easily not work. What is not a long-shot is funding a humanitarian corp that could prevent an entire country from becoming hostages in the first place. Fund a humanitarian corps as big as an army. Train people to fight fire, floods, wounds, disease and every other type of crisis. Have equipment and vehicles ready the way a military does. The reason armies have those things and humanitarian agencies don’t is just money, not any difference in commitment and urgency.

Next time, let’s have an answer that renders the next tyrant impotent.

We don’t send Ukraine fighter jets, not because we don’t have the money, but because the Russians could use that as an excuse to launch a nuke, maybe at us, but maybe just at western Ukraine, into the midst of the millions of refugees streaming toward the west. That’s the scenario I fear most acutely. We have sent humanitarian aid but not enough and not with the logistical coordination that would really matter, and that we could do, IF we were prepared.

I hear the pleas of Ukrainians, begging for NATO—essentially that means the US, my country—to “close the sky.” That sky is raining death and destruction on them every day. And they believe we could stop it. But military analysts know we might well not be able to stop it and it would mean all-out war between superpowers, mostly on top of the Ukrainians. As understandable as their cries are, it would be unlikely to save them.

More armies, bombs and guns has rarely been a good answer in human history. Maybe it was different before the nuclear age. Maybe. I don’t know what it was like to live during WWII. I have generally thought we had to fight the Nazis. And I think the Ukrainians have to fight this war, and the individuals going to fight with them are on there right side of history. But making a bigger war won’t help Ukraine or anyone else.

So, if you’re one of those people wondering what exactly we should do. Build a humanitarian corps. Build international peace and security structures. They matter.

The one time I was facing the barrels of guns in a war zone nose to nose, it was not more guns that saved me and my vulnerable interpreter. It was three unarmed peacekeeping personnel, who put themselves between us and the gunmen. That war could have blown up but it didn’t, and that was one of the reasons why.

My prayers go with all those fleeing war tonight—the people navigating dark back roads winding ever westward or packed into train cars hoping the missiles won’t find them. My prayers go with the drivers heading toward the war with a trunk full of food and winter coats and seats waiting to carry out refugees. My prayers go even with the soldiers, those who have to fight for their homes, those forced to fight, those misled by lies and those who turn aside from killing by jamming their guns or snipping wires in a tank.

I hope against hope that this war, as awful as it is, will not drag out into a longer war, will not cause longstanding hate in mixed families and mixed neighborhoods, will not spill over into other countries. But like so many others, I can’t do much about those things besides hope. What I can do is help to save one more van full of refugees. That won’t change the course of the war, but it will matter to that one.

Laughing til you cry: The perils of overly real comedy for stress relief

This has been one hell of a week in a doozy of a month in the most disrupted year of my adult life.

It hasn't been all bad... I have been making progress to reclaim my health, but it is definitely a rocky and uneven road. I have really enjoyed winter in Eastern Oregon with the sweet air, the trees, the snow, the tracks of wild animals and even the quiet, bermed streets.

But otherwise, seriously... Gods, have mercy!

I don't want to bring anyone else down and mostly it's just the same old things everyone else is dealing with--the long grind of the pandemic with all of its costs. But there are also doctor's appointments of various kinds for me or my kids at least six times a week, my daughter's ongoing crisis, my son's renewed crisis at school and at home, special education plans and meetings for both kids, my grandmother getting covid, the father of my son's best friend dying of an overdose, family conflict and scheduling... this week has just been especially rugged.

One of the things I have learned in my journey back to better health is that the severe stress I have been dealing with for the past ten or fifteen years--largely for reasons I can't control--is likely the primary contributing factor in developing my chronic health problems. And if I want to be healthy and have energy to live joyfully, I have to find ways of reducing stress.

One of the ways I do that is to exercise as soon as my son leaves for school in the mornings. These days it's about six degrees below freezing at 7:30 in the morning and my elliptical is in the unheated free-standing garage. The hardest part is gritting my teeth through the cold until I get warmed up. But I've been listening to clips of Trevor Noah on Youtube and rationing them for exercise time. He seriously helps.

I trust you've probably heard of Trevor Noah. He's one of the few celebrities I've ever loved and it isn't just because he has good politics. It's also that he really laughs at everybody--people like him, people like me, people he agrees with and disagrees with. He has a delightful way of making heavy stuff funny without belittling it.

I get out there to the garage, shivering and working out as hard as I can to get warm and I feel my muscles relax into it as I laugh. I feel the stress shedding off of me.

Image via Unsplash

Except for this morning.

This morning I clicked on Trevor Noah's compilation of videos about white people calling the cops on black people. At first they were really funny. This stuff is so ridiculous. Yes, it's hard not to feel a bit ashamed of fellow white people, but Trevor Noah is so funny that you can get over it.

Except that most of them were about incidents involving little kids. And while he kept on laughing and making jokes and making everybody except the little kids seem like complete clowns, I have two kids who aren't black but they are "of color" and in the Czech Republic, where we came from, they are "the local black." And they're both pretty traumatized by elated crap.

And when I look at those videos, I laugh at Trevor's jokes and I think about the wider social implications, but increasingly with each video what grows and grows inside me is the sense of the trauma that the kids being threatened with cursing and pointed weapons and out-of-control police officers are experiencing.

When I look at those videos, I don't just see incidents involving strangers. I can't help but imagine my kids at those ages and how incredibly fragile and vulnerable to trauma they were at that time. I think even woke white people miss this a bit when getting outraged about how the cops are chronically called on sweet-looking little black kids.

We are upset because it's wrong and unjust and racist. But there is still an "othering" going on in a lot of woke discussions on this topic. The events are presented in woke media as unjust and egregious, but I don't see much comparison to the ultra-careful way we insist our children be treated. Most white parents I know are obsessed with ensuring that no one ever even raises their voice to their child because of possible trauma.

My son is eleven. I recently had to explain to a medical professional that he had been traumatized by "interethnic conflict" in the Czech Republic. The medical professional clearly didn't get it and asked me if the symptoms of this trauma weren't "just normal pre-adolescent adjustment."

I was hesitant to elaborate because my son was present, but in the end I gave this professional a couple of snapshots--like the time my son, at age 9, was picked up by four teens and thrown onto his back while they shouted racial epithets. He had significant bruises and a teacher was watching but did nothing. Afterward. the school refused to intervene and told me I'd have to take it up with the police. And the police said it was the school's problem.

To his credit, this particular medical professional changed his tune immediately and subsequently responded appropriately to try to help. My son is hyper-sensitive to authority, criticism, being singled out and aggression because of these traumas. His response snaps to fight or flight in a split second over the tiniest rebuke. He's back to a wall with fists balled, screaming, fury snapping in his eyes over being asked to pick up his wet towel. When I imagine my son's reaction to being approached aggressively by police with guns and an inflated sense of the threat of darker skin, my blood runs cold.

I'm betting Trevor Noah knows that the incidents he's joking about are not simply unjust but also incredibly traumatizing to the little kids involved, but he doesn't mention that part, possibly because he knows a lot of little kids are watching his show and he doesn't want to retraumatize them.

But still after the sixth or seventh clip, I realize that I'm not laughing anymore. Instead I'm sobbing uncontrollably, still trying to move the exercise machine but gasping raggedly with tears streaming down my face. I don't do the common white othering of black babies that shields us from reality as well anymore.

The last clip I watched involved a four-year-old having cursing, completely freaked-outl cops pointing guns at her and threatening to "put a cap in her head" over a snatched Barbie doll. My daughter took a pack of gum from the corner store when she was about that age. This isn't somebody else. This isn't a symbol. It's a real four year old with the sensitivity, big eyes, vulnerability and lack of developed ethics of every four year old.

I couldn't keep going. This is supposed to be a standard parenting rite of passage. Your kid swipes something from the store and you take the kid back, make them return the item and apologize. For a preschooler, it's both humiliating and terrifying just enough to make a big impression. That's how they learn. Maybe not every kid does it, but a hell of a lot of kids do it around that age.

And any police officers involved are supposed to use a calm voice, squat down to the preschooler's level and give them a good lecture about right and wrong. That's their job, which I have seen them do quite well when the kid caught filching was white.

I rarely turn something off because it's too intense, but I did that time. This was no longer relieving stress. And I know that this stress is just some of the stress that black parents experience all the time. But that is why they also suffer from a very high incidence of chronic health problems a lot like mine.

I'm not going to avoid or ignore these realities. In the interests of relieving stress, writing about it is more effective than just watching and dwelling on it. I'll be back to Trevor Noah another day and I'll laugh at the hard stuff and feel the stress fall away.

We can't sacrifice freedom of information and we shouldn't anyway

I have found that I have an “underlying condition,” so I went willingly, if not eagerly, down to the clinic to get the third dose on a recent Thursday. I did have adverse reactions to the ol’ shoulder jab after both of the first two doses last year—two days of fever, chills and heavy fatigue. But I got the same from a flu shot, so I wasn’t too worried.

I woke up at midnight that night with a rapidly revising opinion. It wasn’t the fact that my shoulder was swollen up like a balloon and painful to the touch or the fever and chills or even the diarrhea that had me worried. It was the searing fire burning off the lining of my stomach. That was disturbing.

I writhed in bed (when I wasn’t crawling to the toilet) for several hours observing as the unrelenting pain grew and grew to a crescendo that had me mewling on my mattress like a hurt kitten. I am used to being able to go back to sleep even with some discomfort but there was clearly no help for it.

I reached out for my phone with a shaking hand and started googling. Was this a regular sort of side effect or some kind of rare and dangerous reaction? I searched on the web and on social media. Surely, if people had this kind of reaction there would be mentions.

Image by Yuris Alhumaydy via Unsplash

But there weren’t. And that scared me more than the searing pain itself. That could mean this must not be a “normal” adverse reaction and it might well be dangerous.

I made the decision then, at about 3 am, that if the pain increased any further I would call 911. I was 20 miles by icy roads from my nearest family members and I can’t drive, though driving in the condition I was in would have been highly inadvisable even if I normally could.

I am not the kind of person to call an ambulance for anything short of the apocalypse. I didn’t call emergency services last spring when my son was injured in a bike accident and he came too close to comfort to dying as a result of my reticence. I have only actually called an ambulance once in my life, when my husband thought he was having a heart attack and our first child was four months old. And that time the ambulance crew griped at me for calling them “over nothing,” because it turned out to be a false alarm.

So, I didn’t call and I waited another agonizing and terrifying three hours until 6 am when a doctor friend in another time zone woke up and answered my text and confirmed that this kind of reaction happens, that she’s seen it and that ibuprofen probably wouldn’t hurt me more.

It didn’t help much either. But what did help a great deal was the reassurance that I wasn't dying of some weird reaction or appendicitis brought on by the chemical brew. And later in the day, my mother braved the icy roads and brought me activated charcoal, which really did help. I still had chills and fatigue and a bit of diarrhea for two days but that is nothing compared to that searing pain.

Spread the word about the activated charcoal as an antidote!

But my advice is that you do so without using the word that I have avoided here which starts with a V or the other word I have avoided which starts with a C. Because if you use either of those words, your post or social media message will be de-prioritized, hidden, deleted or otherwise disappeared.

And that is a sad state of affairs. Really. More than sad. Even dangerous.

Look, don’t get me wrong here. I live in VERY rural, very conservative America. I’ve had a group of sign-waving wackos yell at me for wearing a mask. I’ve heard it all, the nano chips, the fake news virus, and the three people who went blind (or died) from the shot who a friend of a friend told the person I’m speaking to about. I do understand the frustration and I’m even relatively okay with pressuring platforms to cut off rabid purveyors of conspiracy theories and disinformation, as Niel Young did (and yes, he’s awesome for lots of other reasons too).

But there is a vast difference between such conspiracy theories and personal reports of unpleasant side effects to the shot and helpful remedies for those side effects. I am talking to my people, the people who already agree that the virus is dangerous, inoculations in general have deeply changed our society for the better and protecting the vulnerable is important. Please think this through.

There are crucial reasons why we cannot accept the silencing of personal experiences and even the censoring things we don’t agree with.

1. There will be some terrified person who was responsible enough to get the shot waking up in agony tonight somewhere and the next night and the next. And they’ll be googling and they won’t find much except platitudes about how “adverse reactions are rare…” The terror of those hours matters. Allowing comments about side effects may give ammo to a few extremists, but it will calm the fears of those who have done the right thing and it will actually increase the likelihood of some to get the poke.

2. I am not alone in actually trusting science. I know why the messaging hasn’t been consistent. Because it is f—king science, people! They actually have been learning things over the past two years. They were cautious when they didn’t know about this new strain and now they do know something, so they have changed their recommendations. Because they are real doctors and real scientists and they care more about helping people than about appearing to have always been perfectly right. It is not that complicated.

3. By the same token, I trust a pharmaceuticals MORE when the side effects are fully and widely discussed, not less. That means that the companies care about them and are working to improve the given medication and it is unlikely that something worse is being suppressed. That is how trust of science works. This kind of silencing is a worse blow to public confidence in science than any tinfoil-hat influencer could ever dream of striking.

4. And it has never been more urgent to remember that whatever tactics one uses in this country against political enemies WILL be used against you in return one day. I remember back during the days of the Iraq and Afghanistan wars when the censorship of critical voices in the American mainstream media was problematic and many of the same people who are now most committed to curtailing the virus were justifiably upset about it. But we had free rein on social media and alternative media was accessible if you just knew where to look. When I think of the devastation a right wing power center could do with the tools of website de-prioritization and social media silencing for political purposes, I really start to worry.

5. Last but not least, we set a precedent—one which our children observe—when we sacrifice important ethical principles to counter a foe. We essentially hand those principles to that enemy. With this kind of suppression, we are handing the principle of freedom of information to right-wing extremists. And that is a crying shame.

While I know that those in a position to actually change these practices aren’t reading my blog, it matters what we, ordinary people, think and talk about. The reason there has been such overt suppression of critical reports, personal experiences and differing opinions on this is because a large portion of the population enthusiastically supported blocking that stuff. I know. We were reacting to pretty extreme provocation but still, this has gone too far and public opinion may still be able to turn back this unwise step.

Please make your concern about this known, if you agree that we can’t, and shouldn’t, sacrifice freedom of information.

In another life

In the spring and early summer—before my big transcontinental move—a lot of people, whether students or friends, wanted me to make plans for October. I sounded like a broken record, repeating over and over, “I have no idea what my life is going to look like in October.”

After twelve years of being all too sure what the next season or two would bring, it was a good—if also terrifying—feeling. There were far too many things I couldn’t predict.

Now, the reality reminds me of that saying about things one might have done “in another country, in another life.” Here I am and it is very different.

I used to wake up to dawn light and a view of my verdant garden. Now I struggle out of thick pillows and comforters in darkness when the alarm on my phone plays.

Image by Arie Farnam

I used to have to go out early and hike up a hill to feed chickens and tend to large greenhouses. Now I have to open curtains to just barely see out of tiny basement windows and I only have to tend to hydroponic plants under artificial lights and fish that make plant food.

I used to eat yogurt with huckleberry preserves delivered by a local farmer for breakfast. Now I eat my mother’s homegrown eggs and whole-wheat English muffins from Safeway.

I used to tutor students in the evenings. Now late morning is my work time because that is when their evening falls. I used to spend most days alone battling depression and isolation and practical survival for my kids and myself. I also used to have a little time to write, not much but some. Now I spend almost every day on the phone with doctor’s offices and bureaucracies or helping with the crises of multiple high-needs family members. I haven’t had time to even feel guilty for not writing.

I used to eat a lot of meals alone. Now I only rarely eat alone. The cooking schedule has changed and expanded. There are a lot more mouths to feed at random times. Half of the raw ingredients are partly or completely different. I used to be able to easily order a very limited selection of groceries online. It was easy but that was all I could ever get. Now, I can get anything I can dream of, if I can get to the store which is once a week at best. There is no online shopping anymore and only very sketchy public transportation.

I used to have the time and floor-space to do a significant exercise routine every day to stay healthy. Here the ceilings are so low that I can't stretch my hands above my head or accommodate an elliptical machine, and my body never did good with the jarring of jogging on pavement. But I do get to go to the mountains on weekends and climb the steep rugged path to the windswept ridge top for stunning views and a bit of exercise.

I used to have to deal with hostility and overt discrimination every time I left the house. Now, I’m bewildered with the number of people who offer to be helpful and kind in small ways and all I really have to do is remember the exact steps of various processes to get what I need to survive.

My biggest worries used to be about my son getting beat up at school or endlessly sitting in classrooms while teachers marked test papers and showed cartoons instead of teaching. Now my worries are about my son riding his bike with his gang of instant friends and not locking it when he throws it down on this or that lawn to run in to various houses for a snack.

But now I also have to worry about my daughter’s medical appointments, which we didn’t have to worry about before because none were possible and she just went without. I worry about my mother who is helping with my daughter and her many struggles. I worry about my grandmother with dementia who thinks I stole her couch. I worry about more here but less of what I worry about is hopeless.

My neighbors used to be openly judgmental and unfriendly but economically comfortable and mostly shut behind big walls with loud dogs. Now my neighborhood is friendly and gregarious with scruffy, unfenced yards and half-joking warnings to watch out for this or that druggie or thief on the corner. My son used to not get invited to even his best friend’s birthday party or sleep-over because of interethnic bigotry. Now, there are plenty of sleepover possibilities and I try not to worry about my son bringing home bedbugs or witnessing the kind of run-of-the-mill domestic violence I witnessed at friends’ houses in low-income places like this when I was a kid.

I used to take weekends to go to my father-in-law’s farm in the flat marshes of South Bohemia, where the skies are always gray and the huge stone farmhouse is empty and sad. Now I go to my folks’ place up on the pine-covered ridge, where the sky is almost always crisp blue and the log cabin is so full of kids, chickens, dogs and a kitten that you end up stepping on them.

I used to struggle to find enough people to invite to a holiday dinner and I had to cook everything all by myself and play the perfect hostess if anyone came. Now, I have more than enough guests and some of them bring food. My mother is also in the thick of it with me.

People ask me how I’m doing and if I like it better here. And they are a bit disconcerted when I am not enthusiastic one way or the other. I have to stop and think: Well, how IS it going this week?

The answer is that it is very different and I am just barely getting my feet under me. The answer is that in the balance, yes, it’s better. And in the important matters of mental health care for my kids and safety at school it is way better. But it also isn’t easy. I’m tired, overwhelmed and even confused most of the time.

Autumn sunlight sparkles off of the Czech cut-crystal decanter and vase I bought across the ocean. They do nicely to collect and refract the light that filters into my recessed window. Bits of light dance over the autumn tomatoes ripening on the wide sill, and just outside I can see brightly colored leaves in the dirt beyond the screen.

I slip out into the yard to uncover the few remaining tomato plants that I covered last night to protect them from frost. Wind chimes tinkle from the branches of the yard’s only “tree,” which is actually a lilac bush shaped to look like a small tree. It has lost most of its leaves without much show of color, but a tree in the back alley is neon yellow and further down I glimpse ruddy orange.

I can find beauty and nature anywhere, even in a basement. I am growing plants under grow-lights too, though mostly they are still small and weak. I do miss my garden, the rolling terraces of green, the oak, fir and linden trees, the plums, cherries, blackberries, raspberries and currants… I miss the herb beds and the greenhouses and even the smelly chickens and the daily chores they required of me. As the nights grow cold, I miss the sauna we built beside the root cellar.

But even as that life had some good things in it, they were there because that was all I had. I had years of time to build up that garden because outside the garden, there was hostility and closed doors. Here I don’t even know what is outside beyond the frantic pace of family life, but some of the things I thought might only be possible “in another life” whisper to me.

If the pace ever slows, there might be writing or studying or teaching or community. I feel too old or at least too sick and too tired to be starting all over again, but there is still something in a new place and a new chance that sparks long-buried curiosity.

Grist in the mill: Fury and awe over vast inhumane systems

Four O’clock in the morning. I’m washed up in a basement apartment in a town I struggled mightily to escape thirty years ago. No sign of dawn yet and I am learning the full meaning of “circumstances beyond my control.”

Let me try to tell this story without giving you the headache I have. Six weeks ago, I shipped twelve boxes with the majority of everything my kids and I own in the world from the Czech Republic back to Oregon, where I was born. I was scared by tales of US customs debacles, so I used a moving company—one recommended by a friend of a friend.

But that company passed me off to an international corporate shell and that company put my stuff in a warehouse in London and doubled the price of the shipment, held my stuff for ransom and threatened to destroy it if I didn’t pay within three days. I paid—emptying out the bank account set up to give my kids a start in a new country and a new school year. What choice did I have? Five thousand dollars all told, maybe not a catastrophic sum by middle class American standards but a decade’s savings for me—and an unimaginable sum to much of the world.

Then, the company insisted I hadn’t paid, claiming the money never arrived. I’d paid by Visa debit card. My bank sent confirmation that the company had received the payment and the money was gone from my account. The corporate hacks on the other end of a $83-dollar international phone call insisted I had not paid and refused to trace the payment.

Tears. Rage. Frustration. I have never wanted to do violence so badly. But I couldn’t even cuss at them safely. My children’s momentos and photos of childhood are at their mercy. The irreplaceable pottery made by Dave Waln, a family friend, is at their mercy. They’ve even got the clippings of every newspaper story I ever wrote.

(Call me stupid but this was supposed to be the safest way to transport our most precious stuff, safer than the mail, safer even than airline luggage, which does sometimes go astray.)

I’ve felt lost and betrayed and utterly bereft a handful of times before—when dumped by the love of my life five thousand miles from home at the age of nineteen, when I miscarried and lost the hope of having a biological child, or when my adopted child’s diagnosis of a serious disability was confirmed to me while I sat in a crowd of judgmental mothers of perfect children. I’ve hit low spots, sure enough.

But none of those were engineered by giant systems with inexorably turning wheels that grind some people into dust while others feed the machines with their little daily labors. Mostly the lowest points are things no human person is responsible for—acts of nature or of the gods. And while they prompt a dark night of the soul and even futile anger, you know that there is no one and nothing that can change the situation.

In this situation, there were people who could change it, people causing it and cheerfully insinuating that my only recourse would be through international lawyers, which would cost far more than their demand to pay the doubled price yet again.

I tried to go through channels, of course. But back here in Oregon, I am the expert in all things international. My family and friends look at me with wide frightened eyes when I describe this. It’s beyond anything they can cope with. I called a national FBI fraud hotline and was told that they couldn’t help me because I had actually intended to pay this company, whereas the fraud they chase is only when someone’s identity or card information is stolen outright. I called Visa and was told again that they could not help because I am not a bank.

i spent more money I couldn’t spare to call the distant bank that had handled the transaction back in the Czech Republic. They insisted their document should be respected and negotiations with Visa through them would take at least three weeks—by which time the threats of the ransomers would no doubt be long since carried out.

I considered trying to get a lawyer, but I’ve heard how different British law is. They don’t even have lawyers exactly. They have “barristers.” How much would that cost? No doubt the hacks who taunted me on the phone from London were right that it would cost more than just paying them again.

Dawn comes gray and pale through the basement windows. I heat water for tea. The water is acrid with the smell of chlorine and something worse. The tea is barely discernible. My heart is so heavy. This is my life now. An apartment with bare walls and frugally filled shelves, missing keepsakes, bad water and a neighborhood full of endless asphalt, gaunt addicts and warnings to lock every door tight.

Creative Commons image by Ekaterina Didkovskaya

Hands shaking, I tap NPR on my phone screen. I don’t have the focus for an audio book or even one of the blogs or podcasts I follow. The soothing voices on this radio station of my childhood will help a little, I hope.

But the news breaks into my despairing gray morning with Afghanistan—desperate families standing in the desert outside Kabul airport, American humiliation and the vicious Taliban. I have to sit down. I’m reeling, pulled back into my own past with the young interpreter I fought so hard to get out of a war zone where he faced execution.

Even if they are completely anonymous to me, those families in the desert haunt me and goad me. As hopeless as my situation seems, as much as I may be nothing but grist in the ginormous mill of the international finance system, that system needs grist, damn it!

In theory, that system is supposed to work for me. And somehow there must be a way.

That’s maybe the most essential difference between the “first world” and the rest. We may be cogs in a giant system, but the system needs cogs and mostly it is built to keep us more or less alive.

I think of the families of Afghans who worked for American organizations, all those who believed in the dream that American imperialism offered. Now mostly they are trapped and the Taliban has lists of who they are. Journalists say the country is about to go dark for a long time and those people will be utterly at the mercy of ideological zealots who previously killed anyone who stepped out of line.

The ginormous system of international borders, citizenship and asylum claims is not rigged to work for them. Not even in theory. I know with absolute certainty that there are women like me there in Afghanistan, who have worked for NGOs or written as journalists, like me, and who now stand in that place of utter despair and helplessness, knowing they may die for it. Their children may die. And there is nothing they can do to stop it.

That helplessness and complete disempowerment. That’s the worst part of this day and age.

I’m sure life was hard back in the day. And yes, there were warlords who took over and massacred people. I’m not saying there weren’t. The difference with Afghanistan today is that we did this. Not just the war. Let’s put all the convoluted arguments about “nation building” aside.

I’m talking about not letting them get on a plane and come to the US earlier, not giving them visas years ago. That’s how our country caused this at the most basic level. We have borders and immigration policies. And yes, I know all the arguments about why we need them. Maybe some of those arguments even have merit, but the fact is that people in offices made those decisions and turned down visa applications.

And people are dying who wouldn’t have if the stamps had fallen elsewhere or the papers were pushed into a different pile. Systems made of people did this. And those systems are by and large a creation of modern times.

That’s why I feel a kinship with the Afghans, no matter how disproportionate the stakes. Our family belongings are at the mercy of multiple systems made of people—the corporation itself, the international finance system and the systems of international freight shipping. All of these are systems made of people.

I’ve lived through natural disasters—devastating storms, floods and even fire. Those things can make a person feel powerless in a way, but there is also a lot of empowerment in it.

When my family lost their home to fire while my mother was pregnant with me, they rebuilt… in the snow… with hand tools. When a storm isolated us from civilization and electrical power for a week, we put chunks of ice on the stove to thaw for fresh water and survived on stored food. When Covid hit, I didn't have to join the frenzy at grocery stores because I already had a well-stocked pantry and homemade masks weren’t hard to make.

Disasters feel indiscriminate, but they are not entirely disempowering.

Creative Commons image by RNW.org

These massive human systems take my breath away in a different manner. There is no recourse, no hope, utter disempowerment. That’s the curse of our times.

Six weeks later…

I’m in the backyard dressed in rag-bag clothes, painting stain onto boards to build shelves. I’m already smiling because my father has come to help me saw and hang them. The sun is shining. I got a really heavy-duty water filter and I can actually make tea, even if my beloved mugs may be gone forever.

Then a guy in a baggy trucker’s shirt comes in through the open gate and looks around uncertainly. “I think I have a delivery for. you.”

“Twelve boxes?” I gasp with fluttering excitement.

“Well, it’s a pallet. I didn’t count them.” He replies.

There are a few more anxious minutes as we direct him to drive around back, so that we can unload the pallet near my apartment door. Then, as he lowers it I count quickly. All twelve are actually there!!!

And they are battered and crushed with corners blown out but mostly the cardboard and plastic wrap held. There’s one large rip in the side of a box. I peer through and find it entirely blocked by a large copy of Erik the Viking, an out-of-print childhood favorite of mine. Good hold on the shield wall, Erik!

Over the next several days, I unpack each box carefully. A few legos and the odd rock from my collection of too many crystals may have fallen out a corner hole, but mostly our stuff is in remarkably good shape. The pottery was packed in layers of tightly secured cardboard. This wasn’t my first rodeo. Almost all made it through. One glass and wood picture frame smashed beyond recognition, one pottery diffuser crushed to gravel (it wasn’t one of Dave’s), some dented tins and a few cracks in plastic toy containers… But really those are small losses against my very real fears of never getting any of it at all.

How did I get them to stop the scams and let go? I’m not even sure what exactly did it. I held off their threats with official sounding emails and a friend letting them think he was my lawyer. I did get the bank to follow up with Visa, though it took weeks. I contacted a British moving industry association and a London-based consumer rights organization. I learned to write brief, very stern, very business-like, non-emotional, realistically threatening emails. I spent countless hours battling this particular incidence of corporate greed and hubris.

And eventually they agreed to trace the payment and they found, of course, that it was in their account all the time. So, they grudgingly fulfilled their side of the contract.

For the record, the company is called Baggage Hub. Mark it down. Tell your international friends and family. Stay away. Beware! Bad reviews don’t even cover it, but when there is time, oh, will I ever be writing some reviews.

Life is looking better here as well. I found a medical transportation service covered by insurance, so I can get to doctor’s appointments even if I can’t drive and public transit is minimal. My son’s school seems to be working out. My special needs kid may be getting a bit more of the help and treatment she needs. Piece by piece, bit by bit. It’s still chaos but there is progress.

And there are stresses that are no longer there. The interethnic conflict of Central Europe is far away. The unfriendly neighbors who shouted and threw stones when I rode my electric scooter have been replaced by smiling, chatty neighbors, even if some of them are in worse shape than I am. I look forward to getting up in the morning and I sometimes get to walk in the dry, semi-desert mountains.

We don’t hear about Afghanistan anymore. The news has moved on, but I think of them, the ones who didn’t get out. And the one’s who did but had to leave loved ones, homes, keepsakes and old photos behind. I still don’t understand why them and not me. OK, I lost my savings and had a few weeks of great stress, but really in the end, I am still one for whom the large systems of humanity mostly work, not one they work against.

My heart carries you, Jayesh and Makai, my Afghan friends met 23 years ago among refugees in Kazakhstan.

Marriage: The good, the bad and the healthy

I am writing this as I stand at the end of one marriage. By the time you read it, I’ll be witnessing the beginning of another.

My marriage has ended for all intents and purposes. I’m setting up a new household on the other side of the world and untangling what little joint finances there were. We aren’t filing official papers yet, because it isn’t a necessity. But there hasn’t been any intimacy in this relationship for ten years. As far as “marriage” goes, it has probably been over for a while.

What can we really expect of a marriage? As I see it, marriage should be:

Image via Pixabay

1. A commitment to a partner to share all aspects of life, including practical, financial, emotional and intimate,

2. A lifelong state of being part of a family,

3. A promise to support and help a partner particularly when there is physical, financial, emotional or other difficulty, and

4. A bond of mutual caring and esteem.

When it is good, it can be the sacred and wonderful thing it is often held up as. Without such bonds society would be pretty harsh for a lot of people who don't have other strong family ties.

When a marriage ends, it is generally because one or more of those pillars has broken down, not just temporarily or mildly but in a major way.

There were times of anger, resentment and disrespect in my marriage, but there were good parts too and still are. We’d probably stay living in the same household, except that our children need to be in the US for safety and special education services, and my husband/ex doesn’t want to leave the Czech Republic. (What does one call him when we are merely separated and not behaving as married anymore?)

So, I guess it’s what is called “an amicable separation.” We still talk nicely (mostly), assist each other with practical matters and work at co-parenting. We still sometimes have interesting conversations, though they aren’t as two-sided as they once were.

One of the things we used to enjoy were in-depth discussions on politics and psychology. But in recent years, a pattern emerged in which he would expound upon a theory at length and then either get up and leave the room or start looking at his phone as soon as I responded or gave my perspective. In short, he used to be interested in what I had to say and for the last few years he hasn’t been.

That isn’t really “the reason,” but it is part of the reason for the separation. I still enjoy listening to his theories. We mostly have pretty similar views. And when we disagreed in the past, one or the other of us often went over to the other person’s theory after hearing all the reasoning and evidence. We both did it and it was a pretty balanced exchange. We had that kind of relationships, and thinking deeply and flexibly isn’t foreign to either of us.

I’d say that’s why it lasted over twenty years, despite a lot of things stacked against us. I’ve written before about how infertility problems cause the majority of couples who experience them to break up. Having a child with behavioral disabilities is another big factor. Even adopting is considered a risk factor, and I’ll bet international marriage is statistically risky too. One partner having a significant disability is a big one, and social isolation from the local community is another.

We had a lot going against us. And even though this is a real separation. not just a geographical split for practical purposes, I don’t hold it against him—even the growing dismissiveness and coldness. It’s been beyond hard. I strive for calm and pleasantry, but I am not always easy to live with either.

With all that, I’m not ready to jump on the modern anti-marriage bandwagon. I was sadly the last married adult in my family of origin. Everyone else (my brothers, my parents, my grandparents) has already divorced. And now I am joining the club. Despite trying to live a more grounded and emotionally integrated lifestyle than most, we are actually even worse than the statistical norm at keeping marriages together.

I don't know all the reasons for everyone else’s failed marriages, but my experience has been that it’s really hard to keep it together. A marriage is like a bridge under constant pressures and strain from wind, tides, river current, big trucks crossing, earthquakes and plate tectonics.

Modern society exerts huge pressures through shaming of both women and men for everything under the sun and definitely for contradictory things. Modern life is insanely complex and just basic adulting is a challenge for any self-respecting person. Add in issues of unpredictable and draconian working conditions, unrealistic social expectations, higher mobility, reliance on technology for socializing, hyper individualism, judgementalism, political, religious and ethnic walls going up, substance and technology addictions and the glorification of indifference, disrespect and violence in society, and it’s amazing anyone ever stays married.

You might ask (and some religious zealots would more than ask) why we don’t just “stick it out.” Some would say marriage takes work and we’re just choosing to give up. And there’s a lot of judgment in that.

On the one hand, I agree that marriage takes work and when we commit to marriage we should really mean it. I meant it and I’m sure my ex did too. We intended to commit to each other forever. And as for work… well, we worked really hard at it. I’ve been “sticking it out” for at least eleven years, and during that time I focused on positive-thinking techniques and gratitude practices that really helped me appreciate and even love my husband, despite a lack of intimacy and emotional distance.

And I see the cost of that. If I could go back in time and tell the former me of ten years ago that “sticking it out” and gratitude mediations were going to make me a more loving person, but that would not change the temperature of my marriage, I might have chosen to separate a lot earlier. And that’s because there was a cost. For me, the costs were very dramatic—separation from my family, friends and home on the other side of the world to name a few.

Things were so hard (practical stuff, the schools, community isolation, the winters, lack of opportunity for me to have a career) and people would ask me why I was still in the Czech Republic. And the only reasonable answer was “my husband.” And as I repeated that answer over the years, it showed me again and again that this wasn’t a healthy reason.

Still, an oath is and oath, and it is hard for me to imagine that I would have made the leap, if I wasn’t forced by my children’s pressing needs.

But now I’m glad of it. The sense of fresh air and hope, the glad exclamations and smiles of family and friends welcoming me home, even just the freedom to put what I want on the walls of my (albeit low-ceilinged) apartment without arguments or snide comments—it’s a relief that I never expected.

And as for the oath, I did swear to hold my husband as family, and that actually is unlikely to change. But family doesn’t mean living together and it doesn’t mean the single most important relationship of adult life. I also swore to do the best I could for my children and always to act as a free and thinking person with respect for the will of others. If intimacy is absent so long, then I don’t even have the right to force the issue, but I do have the right—and in some sense the duty—to take care of my own needs, so that I am not an emotional burden to others.

I have to write this post a couple of weeks before my self-imposed full-moon deadline because of all the chaos the move is expected to entail. But by the time this post goes out, it will be the full moon of August, and that is when my eldest niece has scheduled her own wedding.

She is someone inordinately precious to me. I love all of my nieces and nephews more than I would have thought possible for that many children who aren’t exactly mine. But the eldest is or was partly mine. She lived with me and my ex for part of high school and through her undergraduate degree of college. She was there when my children were adopted, the only family member we had locally who wasn’t vehemently opposed to the adoptions, the only physically present supporter we had.

But even more than that, she was born when I was sixteen, while I was on my first international adventure, studying as an exchange student in Germany. Because her parents were very young, it was a birth fraught with both joy and fear, fierce love and family conflict.

By the time she was three, I was in Siberia, studying Russian and learning to scavenge for food in a post-apocalyptic society. I clung to a little photograph of her, smiling sweetly with her long hair over one shoulder while I watched the sunlight on the far side of the world slide down my wall and I pushed away hunger and fear. I have felt connected to her all through my adult journey.

And so I want her wedding to be the best ever, full of joy and fulfillment. I don’t want to bring even the shadow of a doubt left over from my own endings into her beginning. Her groom is wonderful, brilliant, fun and quite handsome (if I may venture an opinion). She is radiantly beautiful, feisty, a freshly minted doctorate and an all around hero. What could be better? They have great prospects.

Yet it is hard for me not to think about it, since these two events are happening in the same month. And a wedding like this would make me think of my own wedding, even if my big change didn’t coincide.

I loved my wedding and I still remember it fondly. My family and community in Oregon came together for it in a way that still fills my heart. It was a glorious day of sun, flowers and so many hugs and smiles, and a night of dancing and feeling completely enveloped by good community.

Really, that’s probably one of the things that holds marriages together best. If we had been there, surrounded by that community, I think it would have been much different. And I hope our separation doesn’t disappoint those who supported our union. That still sends a tendril of worry through me, despite how long this move has been coming.

I fortunately don’t have to give any speeches at my niece’s wedding, but I wonder what advice, if any, might actually help from the perspective of a person ending a marriage right at this time. Here’s the best I can do, for my niece or for anyone else starting out:

1. Know your partner well before taking the leap. Arranged marriages may have worked at one time, when marriage was viewed in society mainly as an economic agreement. But today, in western society at least, it really is necessary to know. your partner well. I would be nervous today about any young couple getting married who had NOT lived together for a significant period of time.

2. Consider how your partner behaves, takes responsibility (or not), maintains a balanced mood, takes your needs into account, treats you intimately and exhibits the ability to be flexible and adapt. These things may change very slowly as a person ages, but you are NOT going to be able to “fix” him or her after the wedding. Take note of irritating issues and assume they are more likely to be magnified than mitigated by marriage and time. This doesn’t mean don’t ever get married, since everyone has annoying traits and habits. It means going in with eyes open and conscious decision-making.

3. Know yourself as well as you can. Be clear with yourself about what your boundaries and needs are. Look at how you want to live and what your passions are outside of your partnership. Make sure that the partnership and your partner support your other passions and who you are as a person. Make sure you are not playing a role or adopting an image that takes constant effort and is not in line with your true inner desires. We all wear masks of one sort, but at a time like this—at the beginning of a lifelong partnership—those masks should be true to the self.

4. Make sure you are both able to openly express positive feelings for each other. If I made one mistake in my partnership before I got married, it was to let my partner get away with never expressing his positive feelings for me. He said early on that he thinks “I love you” is cheesy and he doesn’t like the phrase. But the truth was that he had a hard time expressing positive feelings about me in general. This is a pattern with men I’ve known. One boyfriend, when he broke up with me, said, “I know I’ll probably never be with someone so physically beautiful.” I was like, “What the F—!” He never ever told me he thought I was attractive. Neither did the man I married. And he didn’t say he enjoyed our conversations either or that he cared about my happiness, though I know he often did from context. But never hearing any of it took a much greater toll than I would have thought.

5. I also know it isn’t as easy for everyone to express feelings verbally and it isn’t just men. But those of you who have trouble with it, consider it to be exercise. You need it. Your partner needs it. Before you get married and especially after. Get in the habit of voicing your positive, loving and caring feelings. (Note: Expressing sexual desire or need isn't the same thing. That’s about the person speaking and is ultimately transitory. This is about expressing positive feelings for a whole person and care for the inner experience of the other.) If you don’t like a certain phrase, find another one. In twenty years—this is your old auntie speaking—it really really matters.

6. Okay, now that that’s taken care of, let the joy of beginning be full. When you know your partner and yourself well and the decision is clear to you. Then it is time to be full of joy. Old aunties (and anyone else) who has had a rough time of it, needs to smile, clap and bring potluck dishes. It is good for you to start with great joy and hope. Yes, there are pitfalls. You’ll find them soon enough, but this is the time of beginning.

7. When the time of beginning—the honeymoon, literal or figurative—is over and the first hard things come, I do recommend gratitude meditations. Think of three things you appreciate that your partner is or does each day, not always the same ones. (There ARE more than three.) You don’t have to tell anyone, but identifying them clearly to yourself is helpful. It might seem silly at first, but it’s the cumulative effect that matters. That isn’t to say you shouldn’t think or say critical things. We need to adjust in relationships, but when you do need to say something that might be critical, you will also have this storehouse of things you appreciate ready to make the criticism easier to hear. Gratitude meditation will also guard against the demon that kills marriages. That demon’s name is “contempt.” Hatred, disrespect, anger and lack of sex drive can all be overcome. Contempt is the big baddie, correlated in psychological studies with definitive failure. Gratitude, not love, is the thing that keeps it at bay.

8. Let me tell you a secret. When they talk about “sticking it out” and “working on your relationship,” here’s what they mean. Keep coming back and talking again. It’s that simple. You can get mad. You will get mad. You’ll say things in anger and so will your partner. One or both of you will do bad, stupid, oblivious, insensitive or harmful things. And maybe the sex will be good and you will think you don’t care. Or maybe you’ll be so mad that you don’t want to see your partner. Nope, sex isn’t marriage. It really is only a minor component and it will not see you through. Talking isn’t everything, but it is a much bigger component of marriage. You don’t have to be wordy or ebullient. Listening is even more important than speaking. But both are part of “talking” in a marriage. And there is nothing that helps more than always coming back after breaks, arguments, problems or long silences and talking again. Make sure to listen, practice being open to hearing where the other is at. It doesn’t mean they’re right just because you’re letting them finish sentences. Understanding what they think and feel in their worldview is a key first step. And expressing your own feelings and experience of events is crucial as well.

9. Finally, don’t lose track of your true self and your own personal passions. At times, marriage can be all consuming. And that’s great for a bit. It’s also easy to get wrapped up in what your partner is doing. But it is having your own personal passions and your strong inner self that is the best guarantor of both your relationship and your own health. Encourage your partner to develop a self beyond your relationship as well, including interests and friends that you only sort of know. It is great to have as much in common as you can, but over the long run, a little something that is just yours and just hers or his will keep you both healthy and strong together.

Yeah, but who wants to listen to an old auntie who failed at marriage anyway? Well, you’re more than welcome to not listen. I was told a lot of this setting out as well and it sounded awfully abstract then.

But here’s the thing. My marriage may not have worked out in a traditional sort of way, despite twenty years of overcoming the odds through sheer will power at every turn. But I’m in a situation to be amicable and cooperative with my coparent, we’re both pretty psychologically healthy despite a very hard road, and our children aren’t terribly traumatized by our relationship issues. (I had to add “terribly” to that last sentence because we didn’t entirely abide by the advice above and the kids have been impacted to some degree, as a result.)

That may be the new measure of “a successful marriage.” If both partners remain well and whole, still communicate and cooperate in the end and have not harmed anyone else with their relationship issues, that’s pretty decent.

Good luck to the newlyweds. I wish them a miraculously easy time of it, and I also wish them the skills and sturdiness to withstand if that easy road doesn’t work out.

A world designed for people like me

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Getting around

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

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

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

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

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

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

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

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

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

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

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

Social norms

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

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

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

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

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

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

Public services and commerce

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

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

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

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

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

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

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

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

Technology, entertainment and work environments

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

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

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

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

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

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

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

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

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

A few more details just for me

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

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

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

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

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

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

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

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

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

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

Final thoughts

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

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

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

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

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