An expat and a refugee: The fellowship of dissent, exile and the defense of distant homelands

I first met Ahmad in March 2003 on a narrow street shining with rainwater in the deceptively unassuming castle district of Prague a few blocks from Saddam’s embassy.

He was wrapped in a gray raincoat and almost shockingly diminutive. I’d been told I was meeting the head of a local Iraqi dissident organization, and I expected someone a little more substantial. When he turned toward me, his face was one of those that stays handsome decades beyond youth, thin and well-angled, with wrinkles that enhance rather than detract. But I instantly felt his fear.

Saddam Hussein was still in power in Iraq, and a US invasion for the purpose of “regime change” was clearly imminent. Since Ahmad was willing to help antiwar Americans, I’d also kind of assumed he felt completely safe from Saddam’s regime here in Central Europe. It was another preconception I got wrong.

“I’ve lived here for 20 years, and I’ve never been this close to that embassy.” Ahmad’s first words to me were in flawless Czech with a slight Arabic accent that also enhanced rather than detracted from his words.

I instantly recalibrated my approach. This would take tact and empathy. Not that I’d been planning on not being empathetic. But I’d been expecting to get right into the plan and the politics. But Ahmad plunged into the personal and the stuff I would have been afraid to bring up across the cultural divide.

Image of a prague street at night, cobblestones underfoot and ancient stone arches above a small group of people walking through the light from an open doorway - Creative commons image by david seibold of flickr.com

He’d been a young anti-Saddam resistance fighter back in the 1980s at a time when the US was backing Saddam’s regime. He wasn’t Muslim, he pointed out, but rather part of a small Aramaic minority. He’d barely survived when the resistance was pulverized and sent scattering across heavily armed borders. He’d lain in a ditch just a few feet from guys with machine guns who knew he was out there and who would get a bounty if they killed him. They just didn’t happen to look down, so he lived.

Eventually, he’d made it to Turkey and was given the choice of several Soviet-bloc countries where he could get asylum and start his life over--alone, without family or anything more than his technical school education. He had to go to the Soviet bloc because an enemy of Saddam was, at the time, an enemy of the United States.

He told me he chose Czechoslovakia because his resistance cell used to meet in a brewery started by a Czech expat who lived in Iraq for a while. That was all he had to go on. The Czechs have good beer.

Now, it was 2003, the Soviet Union had fallen, Czechoslovakia was no more, the Czechs were in NATO and the United States had changed their tune about Saddam. I could tell Ahmad’s take on the politics of the situation was at best “complicated.” I didn’t blame him. On that first day, we could at least agree that his family was stuck in Iraq and facing the “shock and awe” tactics of the US military and that was not okay. We also both agreed that Saddam really sucked, but that a foreign invasion wasn’t going to help the local political situation.

With that rudimentary sense of common ground, we started an alliance between Czech, American and international antiwar groups and the Iraqi refugees in Prague. There were not many places where antiwar groups had that kind of friendship with the Iraqis. I don’t know if all the Iraqi dissident groups listened and gave the benefit of the doubt to antiwar westerners the way Ahmad did, but I know for a fact that a lot of ultra-focused antiwar activists didn’t dial right down to empathy. Maybe that was why we were different.

We held a protest in front of the Iraqi Embassy that day and then marched to the US Embassy to register our opposition to war plans. We were saying no to war and to authoritarianism by both the US and Iraqi regimes. We were making clear that opposition to the war did not mean support for Saddam’s tyranny.

Later, there were long evenings in Prague wine cellars, where I’d sit next to Ahmad while Czech activists yelled across the table and haggled about which political parties should be allowed to show their symbols at our antiwar rallies. They all wanted Ahmad there. He was a great symbol, but he rarely got a word in with his quiet voice and unassuming stature.

In one such cellar, he finally asked me. “Why are you doing this?”

We’d been over his reasons quite a few times. But I’d just assumed he understood mine. I must have gaped at him a moment too long because he clarified, “At the rally, you said you aren’t a pacifist.”

I had said that in a speech, explaining why Americans abroad were against the war. I’d said that even if one believes some wars are just, this one surely was not. We had plenty of evidence that the “weapons of mass destruction” thing was overblown propaganda. I’d gone on about civilian casualties and soldiers coming home in body bags. But apparently this hadn’t satisfied Ahmad’s curiosity.

Fair enough. Why did I care? I didn’t have any relatives in the military or in harm’s way? Why was I spending all of my spare time organizing protests against this war? He also knew I wasn’t in any political party, given my stance in the Czech inter-party debates. It was a fair question.

“I’m fighting for my country, for our democracy,” I told him. “The underlying issue is that this war and everything that’s happened since 9/11 has changed my country—America. It’s turned it into a hateful state, a surveillance state and largely a police state. Our democracy was never perfect, but this war and the Patriot Act and the rest of it is threatening what democracy we have. Sure, I care about people in Iraq. I don’t want your people to die. That’s just wrong, and I’d do what I can to stop it in any country. But yes, the reason I’m so committed, the reason I’m doing this every day, all day, sacrificing everything else to it, is because I’m afraid for my country too. We probably won’t lose militarily. But we may well lose our democracy and our freedom in this war.”

He listened but didn’t say whether he agreed with me.

Ahmad and I marched side by side at the head of a lot of antiwar demonstrations over the next two years. And he never questioned me again. There were times when we trusted each other with dangerous situations. We stood up for each other whenever there was need. If the Czech Communists came after me, he’d have my back and they would back down in the face of his moral authority. If the international activists criticized him for giving complex answers and being glad when Saddam fell a few months into the war, I defended his right to have complicated interests.

A few months into the occupation, Ahmad’s brother was driving his car in Iraq and was shot and killed by American soldiers. They later admitted it was a case of mistaken identity. He hadn’t done anything wrong. He was just one more civilian killed with impunity. Ahmad called me in tears. I couldn’t believe I was one of the first people he told about this.

I was shaken by my own complicated emotions. It was terrible. I felt guilty, complicit and as if he’d have every reason to hate me as an American. At the same time, I was honored that he called me, and I overwhelmingly admired his sense of fairness and forgiveness in the midst of grief.

We got through that moment. And eventually the protests died down though the endless war dragged on, and Americans and Iraqis continued to die in senseless, unnecessary and brutal ways. Once Ahmad brought his wife and daughter to my home for a potluck. But I could feel him pulling away. I worried that I reminded him of very painful things. I invited him to events, but he rarely accepted. Eventually, we drifted apart for 20 years.

The other day, a notification popped up on my Facebook, a request from an account with a non-Latin alphabet. I hit the “delete” button before I even had a chance to register it. Then, a second later, I realized the script hadn’t been Hindi or Chinese, like a lot of spam, but Arabic. And I can still sort of read Arabic, picking out letters like a first grader. So, I spent ten minutes struggling to undo my delete and get the notification back. Something, some intuition or the first letter, that tall straight Arabic letter A at the beginning of the name nagged at me.

And then, there he was, his full name and his photo--still the same ageless face, hardly seeming older at all, though by now he must be in his sixties. I sent him a friend request back and hoped against hope that he’d respond even though I’d deleted his request. We hadn’t had Facebook back in 2003-2005.

A few days later my phone rang with the weird electronic beeping that heralds an app call rather than a cell call. And there was Ahmad, my old friend. His voice was the same as always, comforting and kind with his lilting accent utterly unchanged. I’ve changed so much that I doubt he could conceive of my life now--half a world away in the US, going to graduate school and living by scavenging with two teenage kids and a broken marriage.

I was on deadline and didn’t really have the time, but we talked for over an hour anyway, sketching out twenty years for each other and mostly not talking politics.

I did ask him at one point, “Do you believe me now? This--what’s happening in the US—surely, you see it. This is what I was talking about. Some of us saw the warning signs back then. I’m still fighting the same war.”

He agreed, but seemed stumped for words of comfort, much the way I had been all those years ago when it was his family on the line.

Fighting fascism: Democracy doesn't come easy

The rallies and marches for democracy across the United States on April 5 were absolutely amazing!

Consider what it takes for 5.2 million people to gather in public places in crowds at the same time, and have almost no incidents of disruption. There were counterprotests and MAGA provocateurs specifically trying to incite trouble, both in big cities and in small towns like ours.

But in almost all cases the organizers of the rallies and marches calmed these situations, using hard-won, conflict-mitigation techniques that many of us have been practicing for decades. In just our little town in Eastern Oregon, we put together a team of eight people tasked with keeping our crowd of 300 people calm and avoiding engagement with counter protesters. We had another team of just four people discouraging people from crossing streets against the lights. This was hard work, but people in the crowd listened to us, and we pulled it off without any incidents or injuries.

Even here, there were MAGA supporters who turned out with open-carry guns and large trucks burning tires to try to intimidate or provoke conflict. One driver sped through a crowded intersection and put many people at risk, but because of our careful traffic group, no one was in the street when they weren’t supposed to be, so no one was hurt. Another time, a driver forced their way onto a crosswalk against the light, while people who had the right-of-way were crossing. Our people stayed calm.

If this happened in a tiny, rural town, I can only imagine what it was like in larger cities, like New York, where crowds filled major avenues for 20 blocks and the police were largely absent. It was all on volunteers to keep the cross streets flagged and avoid traffic accidents. This isn’t simple. It takes training, and it didn’t happen overnight. This took huge coordination and a ton of hard work by thousands of volunteers.

And we’re going to have to do it again and again. This is not even close to over. We’re standing on one of those knife-edges of history. The United States will go fully fascist or it won’t. Even if we are headed for an authoritarian period, will there be lively community resistance or an intimidated and lethargic populace too beaten down by economic blows to push back? Those are the questions of our times.

As a journalist, I got to witness pivotal moments like this for some other countries, seeing some countries get sucked into totalitarian regimes and seeing others gain health care, stronger democratic systems and better safeguards than we have in the US. I’ve known for decades that American democracy was under threat and that we are not immune to coups or authoritarian tactics.

anti-fascist protest - image by Arie farnam

The philosophy of American exceptionalism has been a problem when it comes to the US doing military things overseas that we wouldn’t want other countries doing. But it’s also a problem when Americans think we won’t ever have coups or wars or authoritarianism because we are the definition of democracy. We don’t have a special destiny to be the greatest democracy. We have to fight for our democracy like everybody else.

Europe and Canada do have better health care, stronger democratic systems, better safeguards and less inequality, largely because they have updated their laws to face modern threats to democracy, such as massive corporations, billionaires and AI engines that can manipulate what people see on the internet. If we want to have what they have, save our democracy, prevent full-blown fascism and take back our country, we must accept that we are not immune or destined to be a great democracy.

We are now in a historic struggle for democracy. It will necessarily have many facets. Economic boycotts that target companies complicit in authoritarianism and abuses of democracy and human rights are part of it. Organizing, running for office, showing up to talk to legislators, as well as calling and writing to politicians will play a role. There may come a time when we can muster a general strike, the type of thing that has brought an end to political coups in other countries.

But massive demonstrations are still the backbone of a pro-democracy resistance to authoritarianism. Public events like this “demonstrate” undeniably the numbers of people who are willing to make personal sacrifices and take risks to demand rights and democracy. They also form community bonds.

The mainstream media tends to downplay demonstrations as merely “a way to send a message” to leaders, as if they are nothing more than another form of calling your representatives. But public rallies and marches do more than send a message and the message they send is more than the one most people think they are sending. It isn’t just about telling politicians, “please do X, Y and Z and stop doing A, B and C.” Many people may say these things in the crowd and be quoted as such in newspapers. That’s good and important. But the greatest message being sent—the message that can’t be denied with lies and spin—is the level of commitment the population has to broad topics or issues.

Extinction Rebellion made a big deal out of a statistic about 3.5 percent of the population rising up and that concept has spread to other protest movements today. The idea is that historically there is no instance in which more than 3.5 percent of the population became highly activated against a regime or for a major change and change did NOT come. Some people have taken this to mean that a small minority of the population could force a change, even on a recalcitrant majority. But that isn’t really what the statistic means.

The 3.5 percent is an estimate of what percent of a population has to be willing to go out to public rallies and protests regularly, especially in the face of repression, especially if it is dangerous or costs them inconvenience or risk. It is not because that 3.5 percent can change things all on their own. It is what those gatherings “demonstrate” about the level of commitment and vehemence in the population.

The US population has overwhelmingly supported progressive policies for decades. A significant majority of Americans have supported gun control, universal health care, education, reproductive rights and all kinds of other progressive policies for as long as I can remember. Those policies have not become law because of the anti-majoritarian elements of the US electoral system (such as the electoral college, gerrymandering and "lobbying” aka legalized bribery) as well as because of the corporate sponsorship of the two major parties.

Despite majority opinion being significantly at odds with policy for decades, no shift has come for a wide variety of reasons—lack of awareness, media obfuscation, apathy and hopelessness, prominent among them.

In addition, the population may hold those majority opinions but many people may not hold them strongly enough. Political and social scientists look at what happens when popular commitment to something rises in a population. When people are willing to make sacrifices or take risks for a set of needs or beliefs, even less democratic systems (such as authoritarian coups) can be overcome. That’s what the 3.5 percent rule is about.

And we are well on our way to seeing 3.5 percent or more of the population become engaged. But it isn’t enough for that number of people to come to one demonstration. It will require a longer commitment. It will require sacrifice and risk, because that would mean that a large majority of the population agrees with those who are out demonstrating, not just sort of agrees, but agrees vehemently and that more and more people are willing to lay down personal stakes to make a change. That is when even a less-than-democratic regime will change, whether it wants to or not.

I talk to friends in democratic countries in Europe regularly online, and they are really worried about us. They often say I’d better get out while I can, as if the US is one of those destabilized countries I used to report from. But the reality is that Putin is threatening my second country, the Czech Republic. If Ukraine falls, Europe will be fighting for their lives as much as they did in World War II.

These are the times we are living in—wherever we are. We never wanted it to come to this, but we are facing an authoritarian epoch. There are people being disappeared off the streets in this country for no crime greater than participating in a peaceful protest. Legal immigrants or citizens can officially be rounded up without due process if anyone “suspects” they may be undocumented. There are states where some of my neighbors, who are citizens, have been declared illegal because of medical and gender differences. Our civil service is being gutted and replaced by racist loyalists.

We are facing the fight of our lives. 

Last week before the big protests, there was a swarm of messages on social media, claiming to be “urgent safety information” about the protests. But it was actually lists of people who shouldn’t protest because they’d be at risk. This included immigrants—who really are at increased risk and we should be getting out there doubly to stand up for them—but also saying people of color shouldn’t protest, children should never come to protests (even those that are family friendly and have kids’ activities), and that people with any kind of medical condition or older people shouldn’t come to protests.

It became clear that these posts actually weren’t trying to help. They were being spread by some progressive accounts but also by accounts that were usually pro-MAGA. They started to spread things about turning your phone completely off—not communicating with anyone. There are protest strategies for people involved in civil disobedience that entail not using the internet or not even bringing a phone during specific direct actions. But having crowds of people in the streets without a means of communication helps no one but those who want chaos and violence.

In the end, the protests were peaceful and calm across the nation, amazingly so given the numbers. We saw a microcosm of it in our small town, with a few counterprotestors, some people attempting to intimidate. But we were lucky all around, and online reactions showed that local hardliners seriously underestimated the potential of these protests. In Baker County, the next county over, there was a somewhat smaller protest but they had 50, mostly armed, counterprotestors show up, likely because there was an article in their local paper about the protest a few days before.

That tells me that we too will soon face a lot more reactionary response. There are paramilitary groups all over this country, but especially in rural “red” counties like ours, that would like nothing more than to cause disruption and violence at anti-Trump events. We have a lot of work ahead. And there will likely come a time when just protesting isn’t enough. A general strike is a very likely necessity down the road and civil disobedience that entails real risks and personal sacrifices will be necessary if we want real change.

But with these tools and with the level of commitment that is palpable among us, we do now have the ingredients for change, possibly for change that will do more than just reverse the most recent atrocities. We could see change that repairs much more and allows us to truly join the “prosperous and democratic nations” of the world, at last.

Peeing by the side of the road and rock-bottom moments

Are you overwhelmed? OK, dumb question. It’s more like, “What particular things are overwhelming you just now?”  

Whether it’s family troubles, work pressures, relationship tensions, social strain, the state of the employment market or one’s specific industry, hectic household horrors or the political situation, there are plenty of things barraging us with stress. But it’s interesting to note that while everyone is apparently stressed, some are more stressed than others. 

I came face to face with that recently, while doing some literary research about memoirs. I wrote a memoir some years ago and even got a wonderful literary agent to represent it. She had a successful Manhattan literary practice with some big-name clients, so I was thrilled to sign with her. The way literary agents work is that they help you polish your work and find a publisher, and then they take a 15 percent cut of whatever you make.

Image of peeing outdoors by the intrepid Jennifer Brandel of Flickr.com

In this case, my agent worked on my book for four months—suggesting helpful changes and shopping it to 42 publishers. She said they all responded positively, and some said it was a gripping, amazing manuscript. But they all turned it down with some comment along the lines of, “But this author is completely unknown. We can’t publish a memoir by someone without any public platform.” This included a dozen small presses.  

My agent and I sadly parted ways because she had to work for clients that she could help make money. She never charged me a cent for all that work.  

But she left me with a lot of frustration and a desire to understand the business, so I started reading memoirs—all different kinds of memoirs. There are definitely some good ones out there, though I have to admit that the quality of memoir writing has declined in the past 20 years, in my opinion. There used to be memoirs published simply based on the enjoyment a reader could gain from a skillfully crafted true story. But now, the vast majority of recent memoirs must have some sort of public hook—the author was a bit famous (or wealthy) or they (or their topic) was recently part of a major news story or they have some key expertise about a topic that is in the news or they know someone who is famous, in the news or very wealthy.

Part of my problem is obviously not being in the right place at the right time and not running in the correct circles. My daughter says all I have to do is move to Hollywood. But I also admit that my life is to full to drop everything and crank out a book based on current events in a couple of weeks. Two years ago, had I dropped everything and written about my experiences in Eastern Ukraine, I might have actually stood a chance, though a slim one since I am still officially “a nobody” to the industry. 

What does get a memoir published today is work claiming to be the words of various celebrities. A lot of it is ghost written by professionals and while it isn’t scintillating reading, it’s basically literate. The issue I have with most of the memoirs being published these days isn’t some severe problem with technical quality. It’s the banal focus on the details of celebrity life that repeat again and again in book after book.

I’m not even going to name names, because frankly, these books are so boring they blend together and I don’t want to go back and figure out which book it was by which wealth-born celebrity actress, but one stuck out to me as a quintessential example. A moderately well-known Hollywood actress was telling her life story, including her dreams of acting when she was a teenager in her movie-industry family.  

She described the stresses and perils of teenage angst and self-doubt, the meetings with industry leaders and the nail-biting suspense of waiting for the decisions of casting directors her parents introduced her to. She often spoke to the reader about how to boost one’s own confidence and the need to “just stick to it until you reach your dreams.” Because if she could get through all those trials and tribulations on her road to stardom, surely, anyone can.  

I’ll admit that I would never have gotten that far in this book—research project or no research project—except that I was deep cleaning my house and listening to the audiobook version. I needed something fairly brainless to listen to and the ghost writer did have a pleasantly lilting way with words. But right around the time I was scrubbing my bathtub and had my hands in soap and goo, the book reached its “climax” of plot and tension.  

The actress was involved in last minute negotiations for her first big role and that required driving somewhere that crossed the Sierra Nevada mountains by car. She described this as a perilous journey and went into depth about her stress and last-minute anxieties as they drove. Then she told the driver she needed to find a suitable restroom, and there was some vague discussion of the fact that there was no appropriate place anywhere within many miles. I didn’t really catch whether or not a gas station was unavailable or simply unthinkable.  

But in the end, with the literary fan-fare of high drama, the actress was forced to squat behind a bush and pee on the side of the road. She gushed that she was sure such a thing would never happen to her readers in their struggles for success and assured us that while it was difficult, she did eventually recover. I actually suffered through the rest of the book because I could not quite believe that was the actual plot peak. But it was.  

The plot peak whether in fiction or in a memoir is often the lowest point for the protagonist, rock bottom in terms of reaching a goal or the height of stress. I think about how many people may be experiencing a dark night of the soul this winter. There are families hiding from ICE raids, trying to distract fearful children, or scrambling to make ends meet, to get basic groceries.

There are mother’s grieving still-born or miscarried children who are facing either life-threatening hemorrhages without medical care or legal sanctions or both, on top of their grief. There are young people on the edge of discovering their inner identity who are terrified to share their budding realization with their friends, family, school or counselor because of the negative things they’ve heard about LGBTQ people and now the highest authorities in the land have declared open season on hate.

There are scientists, not just climatologists, battling suicidal ideation because of the devastating reality that everything they’ve meticulously documented over a lifetime career is being tossed in the garbage, and we’re all headed for dystopia-level catastrophe as a result. There are thousands of people who went into public service as a career out of an idealistic belief that a bit of a pay cut compared to the private sector is worth doing work with purpose and heart, who have been summarily dismissed from their jobs or their jobs have ceased to exist overnight.

In my own life, I’ve had a few rock bottom moments over the past several years, so I can’t say that this is the worst moment for me personally. But it is a time of decision making, a turning point that might end up in a memoir as a moment when things reached the breaking point. I’m facing decisions about what I’ll do after I graduate from my MFA program and realizing that if I want to stay in Eastern Oregon and live a life close to the natural environment on my family’s land, I’ll have to accept that a long-standing pattern of bullying and psychological abuse is going to be part of the package. The alternative is striking out on my own to try to forge a completely new career at fifty years old in an economy and literary market that has never been more hostile to independent people pulling themselves up by their creativity straps.

On top of that, I’m watching every structure put in place to level the playing field a bit for people with disabilities be eroded and/or threatened with obliteration. I still remember what it was like not to have health coverage in the United States before Obama, and I have the permanently messed up shoulder to show for it.

Last December, I had surgery on my right eye to preserve my residual vision and it went well, but it did take the spunk out of me for about two weeks. I had scheduled it so that the aftermath would come during the holiday break, so it didn’t interfere with my graduate program. I’ve been so thankful for Medicaid and the access to top eye specialists it’s given me in the last few years. 

The surgeon was gung ho to go to work on the left eye as well, but I asked him to hold off for a school break. But as it turned out, he’s all booked spring break. We were about to decide to postpone it to next fall, because summer isn’t a good season for eye surgeries in general. Then the temporary freeze of Medicaid payment portals hit and the goal of ending Medicaid for people like me was explicitly voiced. A judge has stalled it, so that we still have coverage for the moment, but there’s no telling for how long. I called the clinic back and they said they were already in the process of scheduling my surgery for the middle of spring term. I’ll just have to hope the medical coverage lasts that long and cope with surgery and the high intensity MFA program at the same time. Not a lot of options left. 

The day after that, I got a letter from the insurance company denying coverage for the specialized corneal bandage the doctor had used to shield my eye from excruciating pain after the operation in December. Because it’s a fairly specialized item, it could easily cost upwards of a thousand dollars, more than my monthly income. I’m fighting the decision, of course, but it’s indicative of the times that such a basic thing as a bandage after surgery gets denied and people get threatened with bills that would strip them of the basics of survival. And that’s with Medicaid more-or-less intact.  

The only place I can really breathe deeply these days is on that little bit of land at the north end of the Grande Ronde Valley where I visit every weekend. I take long walks, now with my guide dog Conway, in the pine and fir woods and across the winter-brown ridge tops. It’s a place I can get away from the pressures, the bad news of the world, and increasingly, what feels like surveillance.  

We’ve all heard the stories or experienced that moment where you open your browser or Facebook and get barraged with ads for something you just briefly mentioned to a family member—something fairly obscure and specific that you’ve never actually searched for. There is no doubt that apps are using computer and phone microphones as well as devices for Siri, Alexa and the like to listen in and target ad campaigns based on overheard conversations. At this point, I’ve come to expect it. It’s one of the things I love about the very sketchy cell signal and wifi out at my family’s place. You really can be off-line and out of the eye of AI for a while.

But until now the intrusions seemed restricted to things typed into a search bar, or at most, spoken out loud within range of a microphone. Recently, I had a bizarre experience that challenged this assumption. My sheets got some dirt on them and I decided it was time to wash the whole kit and kaboodle. I stripped the bed and the duvet covers and the pillowcases and threw it all in the washing machine. Then I opened Facebook to check on a couple of groups while I waited. And there was a string of six different ads for new sheets and new duvet covers. The ads continued for two days.

I usually don’t get ads for sheets and duvet covers. Given my search and Amazon shopping histories I get stuff about camping, dogs, keto diets and weirdly medieval-looking wardrobe options. Most of the clothing ads actually aren’t even real. When I’ve tried to connect to a shop through those ads I’ve been bounced into regular clothing retailers, without the retro, Renaissance fair chic. I don’t even search for that stuff, but I’m guessing it’s my very eclectic search history that cues it up.  

The thing is that I never get ads for boring household stuff like sheets and duvet covers but for two days after I stripped my bed, I did. I never mentioned the dirt on the bed or the washing or anything until after all of this went down. So, targeted ads are just be part of the surreal world we’re living in this year.

And I’m not sure the weirdness is only happening in cyberspace. As I was returning from my latest walk across the ridge, I stopped at a flat spot between the cabin where I usually sleep and my parents’ house to let Conway do his thing. It had been a brisk two-mile walk, but he’s a good guide dog and generally won’t pee or poop while we’re out on a trail, so I had to make a point of stopping before we got inside. And I remember that the leash slipped out of my hand and I had to stoop to pick it up.  

After that, I went into the house and helped my mom with a few things, ate lunch and packed up stuff ready to go back to town. Because the internet is so sketchy out there and I didn’t happen to need a flashlight or a magnifying glass or a text reader or a calendar or the weather or an audiobook or my address book or an old recipe or any of the myriad other things I use my phone for, I didn’t notice that it was gone. Thinking back, I know it was supposed to be in the front pocket of a cloth bag I’d been carrying on our long ramble across the ridge, and afterwards, I recalled that I had taken the thermos out of that bag and noticed that it was completely empty, but the absence of the phone that should still have been in there didn’t occur to me then.  

As we were getting in the car though, I ran out to the cabin to get one last thing and on the way back, I felt the sudden strong urge to pee, though I’d already been to the bathroom in the house. The actress who had a ghost writer write that memoir would likely have been utterly shocked, but I didn’t think twice about squatting down to pee outdoors on that little flat spot near the top of the driveway where nobody but the winter birds and deer could see.  

And while I was peeing, I looked at the ground about two feet in front of me, since that is as far as I can see with my eyes.

It took me a few moments to register what I was seeing because it made no sense. There was my phone with the nice brown leather case, lying on the muddy brown carpet of leaves. I wouldn’t have been able to see it had I been standing or had it been even a foot or two further from my face. I could only see it because I squatted down right in that spot to pee. And it was in a very deep signal hole, so I wouldn’t have been able to call it either.

It was right there where I had stopped to let Conway pee an hour earlier, where I had stooped down to get the dropped leash and no doubt upended my bag just enough for it to fall out.

Some will say the ads for sheets and duvet covers is coincidence and corporations aren’t “that bad” with surveillance—yet. And many might say that me finding my brown phone in a pile of brown leaves while legally blind without even looking for it is just freak chance. And maybe it is. But I hope there is some balance in this universe. If the one really is corporate interests trying to squeeze out every cent they can, let the latter be some ancestor or kindly fae or an old god, some spirit looking out for me, because we are sure going to need some spiritual allies.

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.

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.