Of difficult children and intense adults

As a small child, I was variously known as “Squawk,” “Magpie” or “Anna Banana” among family and friends. These monikers all referred to my personality and vocal nature to one degree or another. I was, by all accounts—except my own— “loud,” “argumentative,” “obstinate,” “shrill,” “contradicting,” “willful” and “intense.” In short, I was what is called in today’s psychology literature a “difficult child.”

A neighbor reportedly once told my mother that if I had had a less patient mother, I would have been abused. I chuckle about it now, but I also have my own children and I’ve seen just how far “loud,” “argumentative,” “obstinate,” “shrill,” “contradicting,” “willful” and “intense” can be taken. This kind of parenting isn’t for the timid… or even for most humans.

I’m reminded of this because there’s an old meme doing another round on the internet which makes a simplified case for the pop psychology concept that children with such difficult, stubborn or argumentative personality traits will mature into adults with strong wills, solid analytical skills and independent spirits—implying that “difficult traits” in children often transform into positive adult attributes.

I don’t remember “being difficult” as a child. I remember trying to please adults, trying to navigate the world with very little vision, trying to keep up with my brothers, trying to gain inclusion into groups of other kids, trying to play games I couldn’t see, trying, trying, always striving, rarely being allowed to just be in a place where I didn’t have to fight to hold my ground. And so, for the most part, I believe the reports about my combative, willful and shrill nature as a child.

I was always in a battle to keep up and be included. No wonder I came across as if I was fighting.

Of course, I’ve known quiet, passive, sweet-natured blind children. In fact, most of the blind kids I met at “blind summer camps” were more like that. I was an outlier. Most blind kids learned that the best way to get by in the sighted world was to be sweet in order to attract good things and then to wait quietly for hours to be noticed or occasionally included when it was convenient for the sighted majority.

I remember observing how they were treated and feeling very angry inside—on their behalf, I thought, though now I wonder. Mostly I’ve known only those two types of blind children—willful, shrill terrors like me (and reportedly Hellen Keller) and the sweet, passive flowers. The world greeted me with exasperation and accusations of “being a drama queen,” and greeted the other type with occasional pity and long-term indifference.

I’m told pity is a horrible thing to endure as a blind or disabled person. I don’t have a lot of experience with it myself. I’ve always been so intense, willful and self-advocating that I think I have mostly avoided that fate. So, I’ll reserve judgement on which response is worse, having little experience with the shade of green on the other side of that particular fence. That said, being constantly seen as “irritating” and “overly demanding” just for asking for a place at the table has often been hard.

I don’t know if I had much choice about my intense personality. I grew up in a rough-and-tumble physical world in the woods and hills of Northeastern Oregon—not in a town near them, but in them. I’ve known several legally blind kids who grew up in small, rural towns but spent most of their time indoors, doing sedentary things and waiting to be taken places. That was never a choice in my childhood. I was outside in the woods even as a toddler, trailing behind other kids, tossing pebbles to hear the terrain in front of me and yelling “Wait for me!” after my brothers with irritating persistence.

And I did gain some things the more passive blind kids lacked as a result. I learned such good mobility skills that most people don’t realize I’m legally blind. I have a workaround for just about every physical task that takes vision—from threading needles to hammering nails to flipping pancakes. (Not driving, of course. There are limits.) In my twenties, I often said I was fortunate to have had the childhood I did and the personality I had.

So, is the meme right? I was most of the things the meme describes about difficult children—stubborn, defiant, clingy, argumentative... I wasn’t particularly disobedient, or not more so than other children as far as I’ve heard. But did my stubbornness, defiance, clinginess and argumentativeness serve me well and result in positive adult characteristics in the end?

Today, I’m not so sure. While I was able to gain academic success by being “willful, demanding and stubborn,” I’ve often run into situations in the professional world, where these traits are not helpful and result in being shut out of opportunities. I’ve seen some of the quiet, submissive blind people I used to think had things worse than me gain stable—if often boring—employment and a small but steady circle of friends. Their way definitely has its benefits.

Even more troubling than that is my ongoing worldview of constant struggle. It is very hard to argue that it is unwarranted. I have only rarely chosen to fight when I didn’t have to. But my experience of endless battle against a hostile world has been isolating, not to mention stressful on a deep level. I would not wish it on any young kid.

As an adult, I’m often told that I’m “too intense.” Only rarely is that ever given any specificity, but I believe it must be related to my childhood traits. While I learned to physically adapt to my visual disability to a high degree, I’ve never cracked the code of non-verbal cues, eye contact and recognizing faces that are only vague blurry ovals to me. And yet, because of my stubborn and defiant nature, I keep banging my head against that communication wall, often to the irritation of those on the other side of it.

And watching my own kids and my students mature, I have a broader outlook on the meme’s conclusions as well. While it is true that some level of argumentativeness and spunk in a kid shows a likelihood that the future adult will be able to hold their own and not be passive or wishy-washy throughout their life, the conclusions of the meme are simplistic and ignore less savory realities.

In response, I made my own list of where difficult personality traits can lead in anyone—child or adult—if not tempered. This is not to say that I or anyone else who has the “difficult trait” is doomed to a negative future. But these are pitfalls worth watching out for, especially when parenting teens and young adults.

Here is my list to counter the meme above:

• Stubbornness untempered may lead to an inability to see anyone else's perspective and in its extreme form to arrogance and self-agrandisement.

• Defiance of reasonable and healthy authority too often leads to problems with law enforcement and experiments in criminality. (There is, of course, a vast difference between defiance of reasonable authority, such as a parent protecting a child from real hazards, and defiance of dictatorial and abusive power.)

• Disobedience of healthy and safety oriented rules can and does lead to serious accidents, teenage drunk driving, a high risk of death among young adults, experiments with dangerous substances, bad teeth, poor health and other long-term consequences young people often can't foresee.

• Clinginess in children is usually a healthy attachment behavior and possibly a sign that the world appears confusing and overwhelming to the child, which today is confusing and overwhelming to many adults. Yet, clinginess in older children or teenagers can be a sign of deeper insecurity, and if n to addressed therapeutically, could make the young person more vulnerable to abusive and controlling relationships.

• Backtalk (i.e. disrespect, insults and contempt toward parents) may establish distant or broken family relationships, lack of empathy, problems with other intimate relationships where the same disrespect and contempt habits come up, domestic abuse and bullying of others. (This should not be confused with teenage sassiness or moodiness, which while irritating are likely to pass and don’t appear to correlate with much of anything in adult personality.)

• The meme claims that children who don’t do what their parents say are less likely to fall prey to peer pressure. And yet this simply doesn’t hold up to real-world scrutiny. Not doing what they're told by parents is the opposite of not doing what their peers tell them. The primary reason most teens ignore their parent’s instructions is because they are doing things their peers are telling them to do which are dangerous or unhealthy. Hence why their parents are directing them to do something else.

• Always touching things that they shouldn't (after the age when this is simply normal) is a symptom of impulsivity, often neurologically based and not necessarily their fault. But still impulsivity is something that will cause difficulty in adulthood for individuals who experience it excessively, because significant impulsivity often leads to unwanted debt, accidents, addictions and difficulty achieving one's own desired goals.

Trying to raise teenagers in a world of distractions, addictions, scams and seductive ideologies is hugely challenging. Trying to raise teenagers with neurological disabilities that cause a high degree of impulsivity, obstinacy, negative mood and insecurity is terrifying. When I run across this type of meme, I see the underlying message—one from those not responsible for a struggling teen with a lot of at-risk behaviors to those who are responsible for such a teen.

What that message says is: “People who are not actually raising kids with these difficulties don’t understand but they think they know better than those who are in the thick of it.” The myth makes a much better and simpler meme than the reality ever will.

And to those—like me—who have these “difficult traits” whether you are old or young, I say that we are the ones with a choice. Stubbornness can lead one into resentment of others or it can be an asset in self-discipline. Defiance can be turned against those closest and dearest or against those abusing the planet and the vulnerable in our society. Disobedience to authority need not mean making decisions that harm you just to make a point. It can give the strength to take a principled stand. Impulsivity need not be your master. It can be an ally if marshaled and channelled. Clinginess could lead to codependency or being trapped in abusive relationships, or it could mean allowing yourself to be vulnerable and open in relationships.

The results of “difficult traits” are what the individual practices over the long-term.

Shards of meaning and splinters of spring

My thoughts have been far from the day-to-day this year.

My mind is in books, the stories of four brothers in the vortex of pain in my parents’ generation or the never-real, ideal world of a boy and a marten on Mount Hood. My hands are painting the gleaming fir of new garden-bed posts in the sunshine that is far too early.

Image of pumpkin ridge and mount emily in northeaster oregon in early spring with a lone hiker visible - by arie Farnam

My mind gnaws at the fact that the spring is too early, that we scarcely had any snow, that whole nations are becoming climate refugees. But for us locally it still isn’t too much of a problem. Even the forest fires have struck mercifully elsewhere. My hands are filling the washing machine and turning the dial. My feet are tramping through the kitchen.

My mind is drowning in dying languages and resurrected tongues, in Wall Kimmerer’s desperate struggle to learn Potawatami from the nine remaining fluent speakers, in the legacies of Czech students in the 19th century studying at the feet of country codgers, of Hebrew rekindled with such hope and of St. Patrick burning the last rare books written by Irish Druids. My hands are cutting spaghetti squash and cooking meatballs or dribbling a basketball with my teenage boy.

I’m always listening to some audiobook, always trying to run fast enough to get to something that matters, always writing something while resigned that the chances of an unknown writer getting published these days are minuscule, always trying to reach my kids through the addictive fog of social media and video games, always trying to figure out what really matters.

All this, while my body is going to medical appointments, weeding the garden beds, washing the dishes, organizing transportation for my son and doing physical therapy exercises. My mind is like a restless toddler but one with sophisticated taste.

On a good day, my mind is drawing plot lines and character arcs for two new novels, weaving snippets of poetry in for one character and plant lore in for another. My hands are making flash cards for students an ocean away. Even my mouth and my face are speaking through the computer screen, the same trusty lessons I’ve been teaching for twenty years. Or my fingers and eyes are working over a medical study manuscript, editing for grammar, while my mind is gibbering in helpless fury over the news.

Since January, I’ve been writing down the important things in a date book—not the garden preparations, the dishes or even the tutoring of students but the insights in the books I’ve read, the plot holes and their solutions, my kids’ struggles and tiny triumphs, the news and my various epiphanies. I want to be connected to the day to-day-world, but my mind needs this nourishment and stimulation the way a seedling needs water and sun.

It stretches toward the light in one direction and reaches roots through the soil the opposite way. It can’t help it. No matter where I’m planted, my mind is an unquiet and seeking thing. The only things that truly quiet it are mountains, big sky, trees and an unhindered wind. Meditation every morning settles it some but only temporarily.

This is one reason that I’m going to graduate school, starting this summer. But I also worry because I have a lot more responsibilities and duties and needs and distractions than I did the last time I was in school—twenty-five years ago. I did well in school because there was endless time. I read very slowly because of my wiggle, wobbly eyes, but that didn’t seem to matter when there was nothing else but studying and reading in my days. Now it will be different.

I’ll soon have assigned reading and critiques for my restless mind to dig into. And hopefully, that will be copasetic. But I think this restlessness is partly me and partly the times we’re living in. How can we live quiet contented lives in a world that threatens to self-destruct every twenty-four hours or so? How can we ignore the crises enough to live and give and nurture while also not losing our sense of soul? I am betting these questions are not mine alone.

States' rights versus human rights

There has been some consternation over why South Africa was the one to sue Israel for genocide and why it was in a different international court in the Hague from the one that issued an arrest warrant for Vladimir Putin a little while before. It’s understandable why this is confusing when international law hasn’t had teeth for very long, so most of us grew up without it. But there is a significant reason.

It’s a matter of the difference between states’ rights and human rights. 

The International Criminal Court, which issued the warrant for Putin’s arrest in 2022, prosecutes individuals for international crimes. While the Russian state itself has significant responsibility in the war in Ukraine, it was easy to make a case that Putin was personally responsible. It isn’t easy, but individual victims, as well as states, can bring a case before the ICC. In the case of the war in Gaza, it is harder to pin the case on any one individual and it is difficult, if not impossible, for those affected to bring such a case. 

The International Court of Justice, however, only deals with disputes between states. You have to be a state to sue in that court, which would make it difficult for the Palestinians to bring such a case. South Africa brought the case instead on an interesting basis. Both Israel and South Africa are signatories of the Genocide Convention. At its most essential level, South Africa’s case was “we made a deal and you broke it.” 

Of course, the deal wasn’t just any deal. It was the foundation for an international order founded on law and human rights, rather than on a lawless order of “might makes right.” South Africa’s contention was that if the international structure is broken so egregiously anywhere, it puts us all in danger. Hence why South Africa or anyone else who signed onto the Genocide Convention has legal standing as an aggrieved party. We have all been made less safe.

Image via pixabay

This is essentially why we have laws at all, whether it’s a city ordinance or an international convention. Laws may even be inconvenient most of the time, but when you are personally on the receiving end of bad actions, you definitely want to have laws in place. That’s why smart people decided there should be laws, even when they aren’t personally in danger.

South Africa’s case isn’t just a test of the Genocide Convention specifically. It’s a test of the entire idea of having a world ruled by laws, rather than ruled by whoever has the most nukes or other weapons. There have been other cases before the international courts that mattered, but there has rarely ever been a case in which the facts were so well-documented and the side with extensive superpower backing was so clearly in the wrong. 

Israel’s response to the Hamas attacks that killed 1,200, including 29 children, was immediate and sustained attacks on Gaza. Since Oct 7, 2023, 30,000 Palestinians in Gaza, whose names are known and listed by health authorities, have been killed. Of those, more than 11,000 are children, and most international human rights and legal organizations insist these documented deaths provide a low and conservative estimate, since many more are likely to be buried under rubble. The Israeli attacks have included numerous targeted attacks on schools, refugee camps, ambulances and hospitals, all of which are banned under international laws of war, regardless of allegations about hidden militant hideouts. 

Given the unwavering military aid to Israel by the United States, South Africa’s case may be the most extreme example yet of a state trying to use law instead of armed force to beat sheer might on the international stage. 

And yet, it is interesting that such a case is up to the ICJ, not the ICC—the court that deals with the rights of states instead of the court that deals with the rights of people. It’s almost as if human rights have to win in a states’ rights game. 

Imagine if the world was run based on the rights of states, instead of human rights. I’ve been told, at length, by those who say Israel has a right to do anything and everything to the Palestinians, that there was never a state of Palestine, so the people of Gaza have no real right to their homes. They should be moved to Egypt and Jordan, the two countries that previously owned that area. Now Israel owns it because it was given to them by the British, who had “right of conquest.” 

That is how the situation plays out under the doctrine of states’ rights. Palestine has no right, since it isn’t a state. The “right of conquest” is something like free market competition in states’ rights. “My ad was better than yours, so suck it up!” When states shift positions due to the right of conquest, people can and should simply be uprooted to compensate. 

We saw a lot of this in the aftermath of World War II. German populations were forcibly expelled from neighboring states. Poland was picked up as a whole and moved several hundred miles to the west on the map. And of course, the state of Israel was created in lands that were already inhabited by others.  

At the time, not much sweat or tears was shed by “the great powers” considering the immense toll of human suffering each of those geopolitical moves entailed. But for the past fifty years, the world has swung at least in rhetoric toward a structure of international laws based on human rights, not states’ rights. States’ rights still exist, but only in so far as they do not egregiously abuse human rights. Even if a state loses a war, the international community is no longer ready to accept collective punishment of the population.

The line on what is a serious enough abuse of human rights to warrant international attention is one that is going to be debated for a long time. But the situation in Gaza isn’t anywhere close to that line. It is clearly a human rights issue rising to the level of international concern. It’s hard to come up with modern examples that are more extreme. 

The current Israeli war in Gaza has made this distinction between states’ rights and individual human rights a stark division in world opinion, much the way the same thing occurred during the American civil war. Those who say the civil war was more about “states’ rights” than “slavery” are not entirely wrong, if you look at it from a bloodless, theoretical court room. It was about both, or it was about this same divide between those who want law to apply to states’ rights first and those who want it to apply to human rights first. 

Just as in the American civil war, WWII and its aftermath, the aspect left unquantified in Israels war in Gaza and largely ignored in the states’ rights debate is human suffering. Suffering is the difference between states’ rights and human rights and the reason human rights must come first for anyone looking beyond the courtroom to the human world. States’ rights do matter to human beings. Many people are affected by any change in state structures. But states themselves don’t suffer pain. Only their people do and people without states bleed and suffer as much as those with states. 

The often-repeated demand that Palestinian or Arab leaders “must agree that the state of Israel has a right to exist” is a direct outgrowth of this division in the concept of international law. It is a demand for does a state’s right to exist, as a state with its borders intact. 

However, it is telling that one does not hear as much about how the Israeli people also have rights to live in peace and safety, no matter how they or their forbearers settled that land. There are human-rights reasons that settlers in hostile territory might focus on the existence of a state as essential to their safety. It is likely that without that state, the human rights of the people would be hard to maintain. But the same is obviously true of Palestinians. States’ rights do influence human rights and the lack of a state to claim states’ rights certainly does. 

The current conflict could be resolved much more efficiently and with less suffering if the major powers of the world were willing to entirely submit themselves to the rule of law based on human rights first and states’ rights second. The only way that anyone anywhere, and not least Israelis and Palestinians, will ever really be able to count on their right to live in peace and safety is if the structures of international law are as strong and well-defended as national laws with the clear priority being securing human rights. 

The ruling of the ICJ in this case is a crucial test to that system of international law and how well or poorly it is upheld will likely have impacts far beyond this conflict for generations. The ICJ has ordered Israel to take steps to ensure that its forces do not commit genocide in Gaza, including prohibiting military operation from targeting civilians, holding accountable any Israeli who does violate the Genocide Convention and improving the humanitarian situation in Gaza. 

Contrary to what many of us lay people thought, the ICJ could not actually declare that Israel was already committing genocide. That was not within the court’s legal possibilities. Such a ruling requires many steps and will take years to fully investigate to the standards of international law. However, the current ruling is binding under international law. 

That said, we are all aware that anything “binding” is only as strong as the structure it is bound to. The past seventy years have provided a series of experiments to see whether our world will be ruled by laws or by whoever has the biggest stick. Laws have failed many times but have also succeeded sometimes. 

This case is extraordinarily well documented, even compared to modern conflicts. At present the Israeli military is poised to attack the southern city of Rafah, where 1.4 million people—a million of them refugees from previous attacks—are packed together with nowhere left to run. If Israel is not held responsible for breaches of the court’s declaration, which have already occurred since the ruling in the storming of hospitals and the bombing of groups of fleeing refugees, the legitimacy of every international structure and law will be called into question, including things like climate change agreements and mutual defense pacts. These conventions could become little more than handshakes, which the strongest and most nuclear-equipped states are free to break any time they choose. 

From a human rights standpoint, the current war between Hamas and Israel is undeniably horrific. And yet, it may be the states’ rights case around it that ensures or destroys human rights for many millions and even billions more people for years to come. From a states’ rights perspective, the implications of how this war has been and will be conducted and what will come after are likely to set a precedent for the kind of world we will all live in. 

Have I lost the fire?

An old acquaintance popped up recently telling me about demonstrations against the latest distant war and asking what I’m doing about it. There was a time when I would have been in the thick of it, full of hope, anger and the fire of passionate creativity.

I distinctly remember being twenty something and making pacts with a different friend to never let the fire of passionate activism, creativity and adventure go out. We swore to kick each other in the pants if the other ever wavered. But she’s gone, and I’m afraid I may have lost the fire.

What I didn’t know in my twenties was that soul-sucking, creativity-sapping hard times don’t always come in the form of tear gas, night sticks or bullets. As bad as those things are, there are things that will make you beg for something as easy to fight as a clear and distinct bad guy. And I’m not even talking about the inner demons of mental illness or the parasites of addiction. I managed to avoid those, though life has taught me a lot more compassion for others who didn’t slip the traps.

Image by Arie farnam - a porch railing holding pumpkins with candles inside portraying a pentacle and the word peace in different languages

I had freedom—just enough money to make my own choices and set my own course. I had transferable skills. I could go where I wanted and didn’t have to worry about the needs of others very much as I did. I mistook that privileged existence for deep caring about activism and great creative talent. It’s a common misconception.

Twenty years ago, I got sucked into the black hole of health problems which gave way to family responsibilities which led to worse health problems and much heavier family responsibilities. That’s what happened to my fire. It was buried under a mudslide and I’m still trying to find out if there are any smoldering embers left.

When I was in my late twenties, I gave up my last chances in newspaper journalism to lead antiwar protests. This isn’t something I’ve made a big deal about publicly. Potential employers wouldn’t see it as admirable, after all. I couldn’t stay in journalism and lead protests against the war in Iraq in a major international city at the same time. Journalists have codes of objectivity that preclude that sort of thing and no employers would allow it.

As a twenty-something, I don’t think I entirely thought through the potential consequences of that choice. I had a hot fire in me. I was watching the world explode with protest over a war based on lies, pushed by the questionably elected administration of my home country. It wasn’t happening in Prague yet, and the groups willing to try were marginalized and vulnerable to cheap attacks about supposedly being anti-American. I wasn’t just one more body in the streets for a protest. I was an American who also spoke the local language. Who could more credibly make the case that the protest was about human rights, rather than about being ideologically against the United States?

At that moment and in that place, there was a reasonable hope that I could make a real difference by joining and even leading the protests. The professional sacrifices felt worthwhile. Over the next two years, I was often cast into the role of negotiator between various factions. I had an acquaintance from my old political reporting who ran with the Czech Communist youth organization and friends in the staunchly anti-Communist student block. In a European capital city like ours, numbers of protesters mattered in terms of national policy and relations with the US. I worked to get both sides to come to events, while leaving their antagonistic or self-aggrandizing political banners at home.

Since my negotiating skills proved moderately handy and my rudimentary Arabic had once calmed a tense situation on the first day of our protests, I was also assigned as the negotiator for the Czech and international blocks in discussions with the local Iraqi dissident groups. That wasn’t easy, but it definitely gave me a sense of purpose and of my usefulness in the moment.

My primary counterpart on the Iraqi side was a guy named Ahmad. We worked together closely for months, and then his brother was killed by American soldiers in Iraq in a case of mistaken identity. The incident brought the war home to us. We swore it wouldn’t impact our budding friendship.

That was the last time I remember people losing their jobs or academic opportunities in the US over antiwar protests. Even though I had to make some sacrifices in my own career, I wasn’t directly fired or discriminated against for political reasons. But at the time, there were cases of suspension on college campuses as well as jobs or tenure lost in a variety of places because of people getting involved with antiwar protests.

Today the situation appears even more extreme, not just for people working in media but also in academia, law offices and even completely unrelated industries. I’ve lost track of the prominent journalists who’ve lost their jobs or been forced to resign. The pressure on college professors and students is intense, with even the entirely nonviolent Jewish Voice for Peace organization suspended at universities.

I can’t help but follow the news. People talk about shutting it out. I could just as well shut out thousands of people being killed in my own country or in my extended family. I don’t see the people under the bombs as foreign or as strangers “caught up in ancient enmity.” I’ve been too close. I have PaIestinian and lsraeli friends. I’ve also been in villages under shelling. I’ve had to hide huddled on the floor between the beds while renegade paramilitary forces out for revenge tore apart the neighborhood and bullets struck the gutters and wall just outside my window.

The news of the real world isn’t something I want to be able to shut out. But this time, there isn’t anything I know of that I can do that will matter. I’m in a small rural town where most people have very sparse information about what’s happening and have formed their opinions mainly based on the leaders they are used to listening to. And while the United States is involved in a significant way, another American speaking up about it in this case isn’t going to make a lick of difference, especially not out here in the sticks.

My heart goes out to those friends of mine who are personally affected. Every war is terrible. Innocent people always end up dying by violence, starvation or preventable illness. This war is even more heartbreaking than most to me because of the particularly intractable background and the fact that I know people on both sides of the conflict, none of whom have any realistic possibility of doing anything as individuals to help the innocent people being killed or to move toward peace. The Jewish people protesting the war in the US have the most chance of active agency at the moment, and they are doing admirable activism and often paying a heavy price for it.

When Russia invaded Ukraine, I spent the first few months volunteering to aid refugee evacuations because I had language and map-reading skills that were sorely needed. When Extinction Rebellion appeared to have a real shot at changing high-level European climate change policies, I dropped everything and was willing to get arrested and work with people who I didn’t always get along with to save lives. I wish there was a clear thing to do to make a difference right now. Even better, I yearn for a bad guy whose demise would actually be helpful.

Maybe it’s a symptom of growing up more than of the actual situation. I have realized my own futility. There is no way to win a war like this, and I have neither a useful identity nor any skills to put toward in the cause of peace or to aid the survival of individuals, even in a small way. But I did swear to hold onto the fire, and I wonder where the passion of my activism and creativity has gone.

I have a few little embers, barely glowing in the palm of my hand—the idea of going back to college and getting a master of fine arts degree. It may not help the world much, but it would give me a bit firmer ground on which to stand and from which to do useful and helpful things. But of course, this means entering the world of academia, and in my case, applying for scholarships, at a time when the silence required for career success is at odds with my conscience.

A recent ACLU open letter to colleges and universities across the United States criticized the penalizing and suppression of antiwar student groups during the scouring of Gaza, saying “It echoes America’s mistakes during the McCarthy era.” Students have lost competitive fellowships and job offers over peace-oriented social media posts. The only PaIestinian member of Congress was censured for words of heart-felt compassion for the victims of violence on both sides.

We all stand at the wall now in our own individual ways. We are forced to choose. Who will stand up, speak up, lose their voice, go to jail or lose opportunities as a result? Who will duck their head and hope to speak up more effectively another day? This is one of those times history will ask about.

I nurse my little embers. My fire is not burning brightly now. I’m barely hanging on. So, I change Ls to Is and Is to Ls to avoid the roving bots of censorship and academic blacklisting, I reach out privately to comfort grieving friends and I swallow back the hot words of protest.

Open letter to the disability advocacy movement

I am writing here as one of the poster children of this movement, as a person who truly owes my chance at even the most basic education to the movement. In April 1977, when I was exactly one year old, a group of disability rights activists occupied the federal building in San Francisco for 26 days with minimal food and supplies (and what they had was donated by the Black Panther Party).

The direct result of that protest was the implementation of Section 504, the foundational document of civil rights for people with disabilities in the United States, including the right to attend public school which was not at all assured for blind students, like me, at the time. (See the documentary Crip Camp on Netflix for further info.)

I am writing to those who carry on that tradition in myriad capacities—activists, advocates, teachers, lobbyists, policy makers and everyone else still working hard for the civil rights and equity of people with all kinds of disabilities. I write with overwhelming love and gratitude. And I also write with concern and to raise a flag of caution.

Image of a camp fire and sunset from my solo backpacking trip in the blue mountains of eastern oregon - photo by arie farnam

We have come to a time in this movement where we must be very conscious of what we are doing and who we may inadvertently exclude or abandon. This movement was founded on ideals of radical equality. We are for all people with disabilities and no one is too disabled to be outside our concern.

When I entered school in 1982 in a tiny rural town in Eastern Oregon, I entered a school that had still never served a child with a visible disability, and they didn’t want any. It was a small rural school without great resources and this seemed like a lot of extra work.

But Section 504 was law by then and unwilling and unfriendly as the school administration might have been, I went to school. All through the ‘80s, I fought “the good fight.” And when I say I was a poster child, this is literal. There were several disability rights posters with a photo of me in a tie-dyed shirt and giant glasses peering avidly at a computer screen at a distance of one inch. I knew about them and I approved. I wanted to be included everywhere. I subscribed to the demand for universal integration and the belief that people with disabilities could do anything anywhere.

In 1990, the ADA opened up more opportunities for me and I pressed every advantage, went to college and graduated suma cum laude. I was determined to “show them” (i.e. those who hadn’t wanted me in elementary school and anyone else with an ableist tendency). I was loud and proud. I would just barely admit that I wasn’t going to be a pro-basketball player or a jet pilot, but that was about it for concessions. Instead, I decided to become an international newspaper correspondent and spent several years tramping around war zones while neglecting to mention to my employers that I was legally blind.

I have written incessantly on this blog about the social exclusion that people with disabilities so often face. And this month I started taking a course to help me become a more effective parent advocate for my kids, who both have developmental disabilities. From poster child to foot soldier, this is my movement.

But becoming the adoptive parent of kids with Fetal Alcohol Spectrum disorders has shaken some of the fundamental slogans of that movement for me, slogans like “integration first” and “dignity means the freedom to take risks” and “self-determination at all cost.”

Those things were important to me as a visually impaired student and dare-devil young adult. So what’s the problem?

The problem is that each disability affects a very specific part of a body. Mine affects my eyes. It is ableism then to restrict activities that rely on or can rely on other parts of my body. It would be unacceptable to restrict me from being a parent, because of fears that I might not “see” my toddler swallowing an object and choking. Blind parents keep their toddlers safe by both carefully cleaning and listening with specific attention. There is nothing that says parenting is primarily about seeing.

It’s a different matter though when it comes to driving. Driving does rely very heavily on seeing and so far we don’t have an alternative that makes it safe for a blind person. So, that is specifically and legally denied to us and that, in my view, isn’t ableism, even though I expect people with my level of vision impairment to exercise good judgement and stay the hell away from steering wheels without being legally forced to. So, essentially, I’m okay with that law.

Now, let’s take another example, Let’s say a person with ADD wants to be an air traffic controller and they have the training and otherwise qualify. There are some pretty hairy attention and focus acuity tests you have to pass to do that job. Should people with ADD be legally barred?

No, there’s already a test. Some people with ADD may not be able to focus in the way needed for air traffic control. Others may actually be better at spreading attention across the entire field and thus ensuring they don’t miss peripheral input that could be essential. They should take a test that simulates the actual requirements of the job, like everyone else, and be hired or not based on that, not based on their disability.

I’d even be willing to adopt this standard for vision and driving. What if you just had to take an exacting simulation driving test that included poor light situations, sketchy traffic and small children running out into the road, instead of being qualified or disqualified based on your ability to read a chart in an office? Maybe a good idea! (But I’m still going to flunk either way.)

Most disability advocates ought to be on the same page with me so far. But there are underlying assumptions in the disability rights movement that were so deeply engrained in my thinking that they took years and incredible pain to extract.

We often assume that only certain human faculties can be a legitimate disability. Everyone, regardless of disability, can strive and work hard. Everyone, regardless of disability, can make their own decisions and exercise self-determination. Everyone, regardless of disability, does better with more information and chances to learn. Even, everyone, regardless of disability, is better off when fully integrated with able-bodied peers.

I used to believe these things with fervor. I still wish they were true. But they are not true for everyone.

It’s relatively easy for people to understand that any part or capacity of our physical body can be disabled. But it’s harder for people to grasp the complexity of brain-based disabilities.

Most of us have learned that dyslexia is a very specific thing that affects a person’s ability to process written words. It often has a few other side effects, but we get that a person can be dyslexic and struggle terribly with reading and still be extremely smart and capable in other mental areas. My husband and my brother are both dyslexic and both are college grads and very possibly smarter than me.

ADD is harder for non-experts to grasp, but the diagnosis has become so prevalent that I’m betting you can accept that ADD and ADHD affect very specific parts of the brain that govern attention and focus. Again, different people may have a variety of side effects along with that central effect, but people with these brain differences actually score higher on average on standard intelligence tests than the norm. It’s a disability that is located in the brain but it does not make a person unintelligent any more than my vision impairment renders me completely physically incapable.

BUT (and this is a really tricky “but") brain science has progressed far enough for us to understand that there are specific parts of the brain and brain faculties for everything we do and for every human quality. Importantly in this case, there is a part of the brain governing what are called “executive functions.” This is essentially the control center of the brain and it is essential for making decisions, understanding logic, time, and cause and effect, regulating impulses, emotions, desires and everything else the brain does, and even driving the ability to get motivated, prioritize or cope with frustration.

We are used to thinking of these things as “moral” issues. A person either makes good decisions, shows up on time, controls their anger and momentary desires, makes an effort, shows motivation and swallows frustration or they just deserve what they’ve got coming, which is nothing good from us or from society.

A person with profound developmental disability may have some disability in making decisions but generally not beyond the rest of their mental abilities. As a result, even though they have difficulty making decisions, their general cognitive difficulties are obvious to themselves and others. Hopefully, we accommodate them and they are able to realize their limits and accept help with decisions (like whether or not to rent an expensive apartment), much the way I accept that I can’t drive.

You know who doesn’t have the kind of good judgement about whether or not they can make a decision without help that most developmentally disabled people have? Drunk people. Yup, that’s right. Alcohol attacks this very specific part of the brain, the center for executive functioning. More than any other drug, this is where it strikes.

Now, before you get up in arms about how drunks don’t deserve a level of social protection that would divide the disability rights movement, let me remind you that there is a group of people, a very large group in fact, that suffers from the disabling effects of alcohol permanently and without ever taking a drink—babies born to mothers who drank while their were pregnant.

It is no surprise really that, if alcohol disrupts inhibitions and decision making, lowers cognitive abilities, regulation, motivation and responsibility levels in a person who drinks it, it will also attack those same parts of the brain in a fetus. As we’ve all been told at some point, there is no safe amount of alcohol in pregnancy. While more alcohol generally creates worse effects, it depends on when exactly in the development of the fetus it happens and likely on many other factors.

To be clear, I am talking about just one specific disability. But it is a disability that according to neurologists affects 1 in 20 people in the United States. It is more common than autism and at least as disruptive to daily life. It is also much harder to correctly diagnose and accommodate.

Many people with Fetal Alcohol Spectrum disorders (FASDs) throughout history have been written off by their families, communities and society at large as unmotivated, lazy, uncaring and immoral, because society misunderstands that their lack of regulation and the disruption in basic logical concepts is a disability, not a choice.

An example came up in the disability advocacy class I’m taking. The instructor repeated our movement’s call for self-determination of all young adults with disabilities. Everyone deserves to make decisions for themselves and most decisions worth making involve a certain amount of risk. “The freedom to take risks” is a popular buzz term in disability advocacy.

Several parents, myself included, raised concerns, however, explaining that policies our movement is pushing at state and national levels are directly harming people with FASD because they do not take into account the diversity of needs. A one-slogan-fits-all approach will abandon these vulnerable members of our community to the prisons and homeless encampments where far too many FASD adults end up because our society judges their disability as moral failings or lack of effort.

When parents of teens with prenatal exposure raised this concerns in class, the instructors shot down each one, dismissing the concern as “overprotective.”

I know the scourge of overprotectiveness has hounded people with disabilities for far too long. Much of my success and independence as a legally blind person is the result of my parents’ very liberal parenting in a natural environment where I was allowed to “run wild” with sighted kids. It is also the result of all those years of “passing” for sighted as a young adult and thus avoiding many other potential protective barriers. I met other visually impaired kids at summer camps when I was a teenager and was shocked to find that many who could technically see better than me couldn’t walk on slightly uneven ground unaided or cross quiet streets or climb trees.

These are examples of risks that many parents want to protect a blind child from, fearing that we cannot see the dangers. But blind people with full executive functions know their own limits better than anyone else. It isn’t the seeing that is most important in this risk taking, it’s the assessment of limits and testing of cause and effect. I didn’t rush out and jump off a cliff when I was a kid, even though there were several handy. I explored at my own pace. I learned to throw pebbles ahead of me to test the ground, since using a stick on such uneven ground as our mountain backyard wasn’t feasible. I remembered keenly every rock and hollow and hole in the meadows and every tree and fallen log in the woods. That was how I ran free as a kid and it taught me skills that translated into adult independence.

But my disability was in seeing. My children’s disabilities are in exactly the tools needed to take measured risks. They cannot test cause and effect and gain from it. They cannot explore and then predict. They cannot remember past mistakes and avoid pitfalls the next time. They can improve a little in this with development, but not through “effort,” any more than I can try harder to see.

I’ve been criticized by disability advocates for saying things like this and accused of insulting my children. This is like saying it is an insult to a blind person to insist that it is not appropriate to hold up a printed sign they can’t see. My kids have all kinds of gifts—in social interaction, in athletics, in fashion sense, in just working hard at tasks others might find too boring. But just as I cannot receive information through sight very well as a legally blind person, there are channels that are disabled for them.

Those are partly sensory and partly cognitive, but they are precisely the channels our society leans on most heavily by forcing people to make hundreds of snap decisions each day, deal with contradictory stimuli intended to trick people into impulsive behavior, always consider the long-term effect of our actions and navigate attempts at manipulation and exploitation.

Upon moving to our small town two years ago, my son was picked out as “an easy mark” by a local drug gang within a few short months. The ringleader intuitively understood that this twelve-year-old couldn’t foresee consequences. He gave him candy and compliments, and then asked him to carry packages for the gang. My son was talked into taking hundreds of dollars in cash and distributing it to “friends” at school. He didn’t make decisions in order to end up in these situations. He responded to social interactions and the predictable dangers were not apparent to him. He could not look at the possible implications or resist the temptation of immediate inputs and his strong desire to be accepted. As hard as it may be for others to swallow, these faculties are the core of his disability.

When my children become young adults, the disability rights movement as it stands today would have them decide whether or not they want a parent or guardian involved in their decisions or whether or not they want medical care or developmental disability services. They respond to momentary feelings of comfort and discomfort, rather than long-range cause and effect and they cannot conceptualize either time or the implications of decisions. A young adult with FASD may have a true long-term desire to be employed and live independently, but when it comes time to leave for work, being able to recognize the time and overcome the momentary unpleasantness of getting up early both directly challenge their disability.

An adult with FASD can be misled, defrauded, exploited, made homeless and left with out health care far too easily in our society, especially when our movement insists that each person is able to make their own decisions and spur of the moment decisions are considered definitive.

At thirteen, my son is caught up in the disability services system, which by state regulation in Oregon, insists that he should have sole decision-making power with regards to his finances. At thirteen.

Okay, you may say that’s not so bad, since he doesn’t have a lot of money and I should be the one saving for his future. That’s fine. I’m not even concerned about some serious savings plan. But he talks regularly about wanting to buy a toy drone and fly fishing equipment. These are real interests. He saves his money and works hard to plan for these things. But when he enters a store with one of the disability workers who often take him places, the rules say he can buy whatever strikes his fancy and they have a card with his money on it. And because his disability affects impulsiveness, time sense, number sense and cause and effect, he cannot conceptualize the cost to his long-term goals of buying every shiny trinket or junk food marketed to tap into his impulses.

The rules say that the disability services worker can discuss the purchase with him and remind him of his plan to save, but they have to help him spend his saved money on impulse buys if he insists on it. And he generally does because his brain lives in the moment.

To be frank, I wouldn’t do this to ANY thirteen-year-old, but so much less to a thirteen-year-old with this type of disability, and yet this is one of the rules that the disability advocacy movement has “succeeded” in forcing into state regulations. While a parent has decision-making power when it comes to the finances of most youth, I have no say in my son’s case because his developmental disability puts him in a category where “self-determination at all cost” is the law.

Even more disturbing is the Oregon law that now states that children as young as fourteen can make their own medical decisions, including refusing medical care. At the age of sixteen, they can make all health care decisions for themselves and keep these secret from their parent or guardian. There is no accommodation for children with developmental disabilities in this law, and the disability advocacy movement continues to push for ever heavier burdens of decision-making to be placed on the most vulnerable children.

My daughter is approaching the age of fifteen. She has medication that helps her to function enough to attend school most of the time and to live in a family environment safely. But the effects of the medication take days or even weeks to differentiate. These time intervals are far beyond her grasp. She can only decide to take medication or undergo other medical care based on her momentary experience of it. And a lot of medical care isn’t fun in the moment.

My daughter doesn’t yet realize that it is possible to tell a doctor “no,” so we just do what doctors recommend. But like many individuals with FASD, she has a strong aversion to authority and particularly parental authority. Given the emphasis by the disability advocacy movement on educating developmentally disabled youth about their right to refuse parental authority, she will learn soon. Neither of my children will choose help from parents or guardians now or in the foreseeable future. And the decisions they make on the spur of the moment are not in their true interests or even their real desires. They are the symptoms of the disability.

I want my children to be able to be independent. I want them to make their own plans and have goals and dreams. They do have these, and as best I can, for the moment, I protect their clearly stated plans, goals and dreams from the impulsive symptoms of their disability and from the bewildering, manipulative and exploitative corners of society.

One of the things often said by medical experts in FASD is that if someone wants to help a person with FASD, they must provide “a surrogate frontal lobe.” And this is what I attempt to do. When I’m saving for necessities or long-held desires, and I see something attractive that I keenly wish I could buy, my brain’s executive functioning center says “no.” When I feel great reluctance to undergo dental work, my brain’s executive functioning center in the frontal lobe makes me do it anyway.

My children can’t and aren’t medically expected to be able to do that for themselves. It is no different from me not being able to see. To throw them to the wolves of our society where one’s executive functions are often the only protection, is no different than putting. me behind the wheel of a car on a six-lane freeway.

I’m not likely to be chosen to coin slogans for the disability advocacy movement But I hope that we can remember our roots in radical equity as envisioned by the pioneers of our movement in 1977. They embraced disability as a fact and an identity. They asked accessibility and to seen as more than just their disability. They did not ask for their specific disabilities to be ignored or dismissed as irrelevant. All of that still applies today, and neuroscience backs it up.

Disability can affect any part of the human body or brain. Each person with a disability is different and is still a person with value. We ask that our lives, health, safety, access, inclusion, freedom and prosperity be as important as anyone else’s. We ask that when society has set things up for a certain type of person and that set up threatens the life, health, safety, access, inclusion, freedom or property of an individual that society makes changes to protect the individual’s rights. That’s it in a nutshell, ins’t it.

We have differentiated between equality and equity in our movement. Equality is saying everyone is allowed to use the steps and come into the building. Equity is making sure everyone has realistic access. Equality is saying “every person should make their own decisions in a manipulative and exploitative world and they can choose to get help or not.” Equity would be saying, “every person should have the support they need to truly make their own decisions.”

Parents, guardians and helpers of people with FASD are not being “overprotective” when we say that these individuals need real and definitive help with decision-making and risk taking. We are recognizing their specific disabilities and attempting to honor the decisions, desires and goals they express at times when their disability is not being directly challenged by stimuli they can’t process. We need the disability advocacy movement to acknowledge this disability for what it is and stand with our children. Insisting on slogans that harm the most vulnerable, because they sound good and work for most of us has already caused harm and it will continue to, if we don’t change course.

A giant movement is like a massive ship. Turning something this big wont’t be easy. But we can adapt, as we always have, to ensure that none of us are sacrificed for rhetoric.

Taking action with what you've got

This post has turned out to be a kind of sequel to my July post about the limitations of taking action under adverse circumstances. I didn’t actually plan it this way, but here it is.

Having children pretty much always takes a lot of a person’s choices away—or at least it should. There are examples of parents who go off to do their own thing and voluntarily leave their children to be cared for by others, but barring that, parenting generally means a lot of restrictions on one’s own choices. Parenting kids with developmental disabilities multiplies that constraint many times over.

I did try to make my own choices within those boundaries while my kids were growing up, but the limited range of possible choices felt very restrictive at times. I couldn’t go to graduate school, travel or even work a solid job. I couldn’t choose what I was going to eat without the significant expense and time outlay of making separate meals. I couldn’t up and go someplace for a few days. On the vast majority of days, I couldn’t choose what I wanted to do beyond a few minutes early in the morning.

Night camp with the lights of the grande ronde valley - image by arie farnam

Events came and happened to me. Life got incrementally and sometimes suddenly harder. Any steps I wanted to take, even just to get help for my high-needs kids, were many times harder than they would have been alone. It was like slogging through knee deep mud while wearing chains. I rarely felt like I could take any particular action to change my life for the better. Now, that both of my kids are temporarily in other households, bits of my own agency have returned to me.

This return has dawned on me gradually. In the first weeks, it was all I could do to recover and put my home back together—as if after a hurricane. Then, a couple of weeks ago, I was sitting in my special chair by the window, enjoying morning chai and the golden light on the tree outside after my meditation practice, and that part of my mind began pining for the mountains again.

This comes on me every few months. I spent a good part of my youth backpacking either in the Blue Mountains of Eastern Oregon or in other countries around the world where I travelled. I loved being in the mountains far from cars and crowds, especially in Eastern Oregon where the natural environment is so magical, wild and relatively clean. The yearning came back that morning with a vengeance, and I was so used to just sitting with it and accepting it as a longing which cannot be fulfilled, that I didn’t go beyond that for some time.

When my children were very small, backpacking wasn’t an option. Even before that, I found that my health difficulties were making it complicated. Whenever I went on a hike with friends, my body ached and my feet were so sore by the end of the day that I was in extreme pain and couldn’t enjoy camp life. I was always too slow for the rest of the group and the length of the hike was beyond what I could handle.

Once my kids were old enough, we did take them camping fairly often, but it was a grueling ordeal. Their disabilities made camp life even more arduous than it usually is and their hygiene even harder to keep up to a bare minimum. At least one of them refused any kind of hike, so we always had to car camp in crowded, noisy campgrounds. Again, for various reasons, it was mostly miserable.

What I long for is not car camping next to a bunch of drunk college kids. It isn’t even hiking 15 miles with a 30 pound pack at a pace that is swift enough that I have to keep my eyes glued to the trail to keep from tripping. The more I thought about it, the more I realized that what I yearn for is not that unreasonable, at least not in my current situation.

I am no longer a young girl, afraid to be alone. I enjoy solitude. I have the skills to deal with the mountains. And if I hiked five miles, instead of fifteen, I wouldn’t be miserable and I’d still get away from the noisiest campgrounds. I no longer have to take kids with me who refuse to go to natural places or who can’t stay safe in a camp situation—at least not every day of the week. And for the moment, my work is flexible enough that backpacking doesn’t have to be restricted only to weekends when I have kid duty.

It hit me like a sudden revelation. In this case, despite the many barriers and difficulties, I can do something to change my life in a way that will make me happy.

I realized that one other thing that has held me back with backpacking is always having crappy, second-hand gear. So, I researched and saved and pinched pennies. And I was able to buy not just a new sleeping bag and pad but the type I actually want—not the top of the line necessarily, but a pad that is rated for people with back problems. And my gear is light enough to carry without making those problems worse. I ordered an ultra-light tent for just one person. I’m not going to count on anyone else coming along.

But the tent hasn’t come and the warm season is nearly over for now, so I borrowed an old rickety tent with a busted pole and a makeshift rainfly and tested out the rest of my gear on top of Pumpkin Ridge. I was delighted to find that the specialized pad really is much better than the old, twentieth century gear I’m used to. I made tea and watched the lights in the valley while the sounds of the meadow rustled softly.

While I lay in the dark, coyotes howled off to the west—a sound I find comforting, though I’ve seen others panic at it. I know from experience that coyotes won’t mess with a camp. Around about 4:00 in the morning, I was awakened by the thud of hooves nearby in the meadow—several elk or deer passed through. And again, I could be confident they would keep their distance.

To be clear, I am arming myself with high-end pepper spray and hope to soon have a dog. Taking action on your own is not about being reckless. But there is a great deal to be said for finding a way to do what you want that is not reliant on others or on circumstances.

A big part of what has made this possible is the improvement of my health, but that too has been a matter of taking the metaphorical bull by the horns. I am nearing two years on a strict ketogenic diet modified for diabetics and the results have been astounding.

My doctor has taken to telling me “whatever you’re doing, just keep doing it.” Another doctor wants to claim the original diagnosis must have been wrong because “no one can beat diabetes like that.” But I know I haven’t actually beaten it. It will come back—not just eventually but within hours—if I fall off the wagon, which I’ve found out by making the occasional unintentional mistake.

As the sun peeked through the pines on the ridge, I heated water on my tiny, lightweight stove, added tea powder, MCT oil, butter and dehydrated coconut. It makes for a fortifying, healthy, ketogenic drink that keeps me running for hours in the morning. I did my exercises on the ridge top, balancing in various poses above the crackly leaves of mule’s ear and the spiky dry grasses. Then I shouldered my pack and hiked down again.

Since my child-care duties have been relieved a bit, I’ve started a daily exercise routine, primarily to strengthen core muscles. I go to acupuncture and the occasional massage to help the arthritis in my spine. I can’t guarantee I’ll always be able to backpack and it took two years of hard work to get even to this modest level of fitness again, but this is my version of taking charge of my life.

My next adventure will be to apply for the Masters of Fine Arts in Creative Writing at Eastern Oregon University over the winter. It will take a minor miracle in financing, since there is only one scholarship for one student and I need to be the one chosen in order to make ends meet. It will also take my childcare supports staying put, which is by no means guaranteed. But by next summer, I hope to be a graduate student who occasionally gets to go hiking.

The morning rays of a new life have come and I’ve taken up the work of rediscovering my own agency. Sure, it’s tenuous and quite different from what I hoped and dreamed thirty years ago. But it has brought me back to the core elements of what my soul needs.

Taking action: With and without empowerment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When they claim it's all about ancient hatred...

When Russia first invaded Ukraine, I spent every spare minute helping a scrappy group of aid workers evacuate Ukrainian refugees from the war. At the same time, I was juggling my intensive work with my kids with special needs, including mountains of paperwork.

A family member would take my kids for an hour or so, and I’d shoot out a message on the encrypted chat saying that I had a few minutes to help. I was immediately sent the coordinates of and basic information about a small group or family of refugees and the border crossing they hoped to get to. My job was to use Ukrainian Cyrillic maps, my knowledge of the region and a steady stream of military reports to plot a safe course for the refugees across hundreds of miles of hot territory.

The situation in war changes minute by minute and while some roads were better than others for a while, there were no actual safe zones. I had to keep up with the incident reports of the war. More than once, I was about to route refugees down a well-used road or over a bridge, only to have it bombed and have to call them back at the last minute.

Creative /Commons image by vasenka photography

It was always a race against time, no matter when I logged on. Once we had foreign drivers headed for a children’s home to evacuate orphaned babies and they couldn’t find the street address in the identified town, because in accordance with Eastern European custom, the address was listed as being in the town, when it was actually in one of the outlying villages. Knowing this, I found it just in time and the drivers were redirected.

Then something started to raise my hackles.

More and more of the people I worked with in the international organization expressed animosity toward Russians. By this I mean toward ordinary people. We always hated Putin and the oligarchs and the military. But increasingly there were vicious jokes and fantasies about killing Russians in informal comments.

At first, I said nothing. They had reason. It was stressful work and they were letting off steam. From what I could tell, the Ukrainians among us would have no part of it. They had more reason, but they were more reticent to start with the talk of hate and killing. Maybe it was too real to them. Eventually, I mentioned that hate wasn’t what we were about, and several of my colleagues became irate.

Didn’t I want the Ukrainians to win? Clearly, the Russians are the aggressors here.

And despite levels of complexity I am aware of in the conflict that some of my colleagues were not, yes, I agreed on general principle.

BUT that doesn’t change the issue. How many times have Americans been the aggressors in a war or invasion? If being a citizen of an aggressor nation made one worthy of death, then I and most of the volunteers would be sentenced too.

And I know well what it is like to disagree with a powerful military machine in one’s own country. When I was involved with international organizations against the US invasion of Iraq, alongside Iraqi dissidents, no one talked about wanting to kill Americans. Thank goodness.

Beyond even that though, I strongly dislike fueling the narrative of hatred in this war. It isn’t good in any war, but in this case, it makes even less sense than usual. I’ve yet to see a war that wasn’t utterly senseless and stupid, but this one takes the cake.

I know some reasons why our Ukrainian colleagues may have been silent that many of the Americans and Europeans in the group might not. One reason is that Ukrainian citizens are about a third Russian and there is no clear dividing line. Families are mixed. Friends are intertwined. No one made much of it until recently.

This has, of course, made the shock and terror of this war even worse for the people most closely effected. In the first days of the war, I noted that many of the refugees speaking to journalists as they crossed into Poland were actually speaking Russian, not Ukrainian. Of course, the fighting was heaviest in the eastern part of Ukraine, where most of the people speak Russian and have strong ties to Russia. In the first days, the war was not just a war of Russia against Ukraine, but also a war of Russian power holders against people they saw as their somewhat disloyal serfs.

Still, there has been some real tension between Ukrainians and Russians for years, though most of that was among the political elites and those involved in nationalist groups. Ordinary people, especially in Eastern Ukraine where the conflict has centered, have been so intermingled that few can say they are one-hundred percent Ukrainian or one-hundred percent Russian.

Twenty years ago, some of my closest friends in Prague were a group of artists from the Ukrainian city of Kharkiv who called themselves the Tender Russian Painters, though their last names—Boyko, Chernenko and so on—named them more as Ukrainian than Russian.

Though Russian was the language they spoke most often, they were eclectic artists, mostly not even painters. They also weren’t particularly tender.

They set up a safe house for refugees from the authoritarian regimes in Russia and Belarus without any official backing and took no crap. I entered their world as a journalist but soon became an honorary member. The safehouse often had its electricity cut for lack of funds and we’d talk by candlelight with groups of dissidents who had to flee their homes due to incredibly minor disagreements with the Russian and Belarusian regimes. I’d bring a giant pot of potato and cabbage soup and listen to their stories.

None of these people ever made much of their various ethnicities. Ukrainian, Russian, Rusyn and Belarusian flew around in a swirl of eastern Slavic words that I certainly couldn’t untangle as the lone American in the bunch. Soon they adopted a German and a Nepali migrant worker as well. There was little room in that atmosphere for nationalism or ideology.

Later, when I worked in Ukraine there were ethnic tensions only among fringe elements of society. Most Ukrainians and Russians in eastern Ukraine had plenty of both in their family trees.

When issues did crop up, they were more political than ethnic. There were those who were nationalist and wanted monolithic state languages to stand undiluted. There were also more liberal or cosmopolitan opinions, not just among smaller minority groups but among both Russians and Ukrainians as well.

Recently, reports in the news have revealed the activities of both Russian and Ukrainian extremist and paramilitary groups—precisely the type of rogue combatants who were responsible for the most heinous atrocities in the Balkan wars.

The development of such groups was inevitable, I suppose, even given the scarcity of actual neighborly hatred between ordinary Russians and Ukrainians. A population can only take so much war before some elements crack and become vicious.

Now there are pundits on the region who mutter about “ancient ethnic hatreds.” That’s what they said about Bosnia, Kosovo and Macedonia too. But when I went and walked the streets with the people in those places, I found bewilderment more often than extremism.

“We were neighbors! We were friends.”

“We worked at the same factory. We went to the same school.”

“I didn’t even know what side I was supposed to belong to.”

That is the reality for the people in the towns and villages of eastern Ukraine as well. Yes, there were Russian activists and hot heads who took money from Putin’s stooges to stir up controversy and make an appearance of widespread grievances among the Russian minority. But the actual concern for locals was limited to wanting to use their native language at school or wanting more investment from the Ukrainian capital, not less.

And on the other side, yes, many Ukrainians felt the oppressive weight of Russia as a foreign superpower glowering over them for years. That was why many Ukrainians voted for measures to require that all citizens of the country learn Ukrainian as well as any minority language they might speak. But that was about as far as the tensions went for most people.

Both Russia and the US meddled in this. Russian interests funded Russian nationalist groups and the US funded Ukrainian nationalist groups, including most unfortunately some with ties to neo-Nazi associations. Both superpowers attempted to interfere in Ukrainian elections for at least twenty years.

The fact is that Russia felt the diminishing of its national power and influence as Ukraine became a separate country, and the US wanted anti-Russian sentiment in Ukraine to increase for geo-political purposes. The extremist groups were the only ones either major power could get to raise their concerns locally.

The fact that I point out these uncomfortable issues does not make me an apologist for Russian aggression. There is no excuse for the kind of illegal and idiotic imperialism that Putin and the Russian military have unleashed on Ukraine. Ukrainians have a right to self-determination. Even if US involvement was, in this case, less brutal and bloody, it was also an infringement of that right, which then handed Putin an unfortunate propaganda bludgeon in this war.

The fact remains that this is not a war based on “ethnic hatred.” Most Ukrainians and most Russians have been dragged into the conflict kicking and screaming. This is instead a war of geo-politics.

But wars do create hatred and deeply held enmity. These militarized nationalist groups won’t disappear even if a ceasefire is signed or certain powerful leaders die or undergo regime change. Both governments are likely to deny responsibility for ongoing violence by the paramilitaries they created.

Why does this matter now? Why discuss it if there is nothing we can do?

Because talk of hatred will inevitably lead to a withdrawal of empathy, not just for those we see as the enemy but even for those we think of as the victims. When we in countries that have not recently fought a war at home dismiss the conflicts of others as the product of some implacable “ancient ethnic hatred,” we tell ourselves that this is something that happens only in such barbaric places and we set ourselves apart from the kind of backward people who engage in “ethnic hatred.”

In reality, the US shares responsibility for part of this mess. The US supported extremist groups that have morphed into the kind of paramilitaries that escalate communities toward hatred.

Ordinary Ukrainians and Russians were about as ready to go to war with each other as Oregonians and Idahoans (which if you live in Eastern Oregon, you’ll get that analogy even more explicitly). Yes, there were differences. Yes, some even rallied to secede and join their eastern neighbor. But it was geopolitics that made it erupt in war, not hatred among people.

It is crucial that we do not use such easy explanations to dismiss and distance ourselves from people suffering war on the other side of the world. They are more like us than is comfortable.