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

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couples in which one member is transgender from fertility treatments under public health insurance programs have been rescinded.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

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

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

 Creative Commons image by  Niklas Montelius

Creative Commons image by Niklas Montelius

Adoption, apparently.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do the blind understand what the sighted see?

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

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

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

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

 Creative Commons image by Neticola Sny

Creative Commons image by Neticola Sny

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 Creative Commons image by Mike Behnken

Creative Commons image by Mike Behnken

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Children of drought: Dry dust and roaring flood

Wet, singed air. A heavy blanket of heat interrupted by eddies of cool. That sizzling sound that comes from the earth. Blessed, blessed rain. After long drought, rain at last!

There is nothing quite like the smell and the sound of rain on a parched landscape. The Summer Solstice brought the rain here--unexpected, unpredicted by the weather services. The storm winds lashed the land and broke our prime plum tree like a match stick. Still it was a gift at that.

We'd had three months of drought and the impact on agriculture and the municipal water is dramatic. Our small town is trucking in drinking water daily. and what is usually a lush verdant landscape in June is parched yellow and brown like the semi-desert where I grew up.

This isn't the semi-desert though. It's soft, green Central Europe.

 Creative Commons image by Kate Russell 

Creative Commons image by Kate Russell 

Yet climate change has brought the drought, pushing the arid climate of the Balkans north over the past ten years. Both winters and summers are drier and warmer. For several years there have been water shortages but this year is the worst anyone can remember.

And with the drought comes another kind of desperation up from the south. Trails of refugees,, clinging to tiny boats to cross the salt water and then walking in lines so long you don't see the end.

The media doesn't report their stories much. You see a mother with a small child alone, no men. They two are huddled against a fence, sleeping on pavement for three days while they wait for authorities to say whether they will be deported back to a place with no food and certain death in the war. We know little more of their stories. 

And most people don't care to know. It isn't about opening up to a ragged and persecuted few anymore. Now we are seeing the first lapping waves of what will be a roaring flood. Climate refugees.

In Syria, Iraq, Iran, Yemen and Egypt they once fed themselves. It was dry but they had methods of conserving water. Now, there simply is no water to conserve. Nothing will grow without water. And there are millions upon millions of people who cannot under any circumstances be fed in those lands of much greater drought. And we are well aware of the chaos even our little drought has caused.

I sat in a cafe with my husband on the eve of the Solstice. It was our first time out together in months. The kids are on their annual overnight school trip  It was a rare treat and we sat eating grown-up cuisine and little goblets of iced coffee and tiramisu. 

Gods, we needed it.

We had been at each other like irritated cats for weeks. Every criticism bites and there is plenty to criticize. We're exhausted and neither of us gets done what we're supposed to most days.

He talked loud about despair: "The politics in Europe and America are just spiraling into hate and I can't even blame them. Left or right, it doesn't even matter. Someone is always there to take advantage of the frustration and hype fear."

I try to get him to speak more softly in the restaurant, but he doesn't care anymore. "Yeah, people hate immigrants. But these aren't the kind of immigrants we used to get. Those were the small business people who wanted to seek a better life, political dissidents and intellectuals. Now we get everyone, whole countries, because they are starving. Climate change, you know. The deserts are taking over. People fight over land. Wars and hunger push people out and they come here. But we're too small and if we really took them in, we could end up a minority in our own country."

Before you sneer at that final line, ask a Native American if it is possible for migrants to take over and make you a minority in your own country. Climate change is that kind of phenomenon--so massive that it will likely move whole populations within our lifetime. 

I tell him about the children in cages along the southern border in the US. We know more than most about the trauma of separation that will follow those children for a lifetime. Our own children started their lives in orphanages. They were materially comfortable, but one screamed almost non-stop for the first two years he was home, a high-pitched terrified scream that both drove you away and broke your heart at the same time. The other kid still totters around speaking in baby gurgles most days nine years later, even though she tests average for IQ. 

This is not an "Oh well, they had to go to mandatory summer camp," kind of thing, Separation from family in childhood, being housed in impersonal environments and the terror of not knowing when or if familiar people will return cause lifelong trauma.

 Creative commons image by Freedom House of Flickr

Creative commons image by Freedom House of Flickr

My husband shook his head. "What are we supposed to do?" He gestured helplessly toward the main road of town. Cars were backed up miles, not even crawling. We got to the cafe on bikes. 

It's a single lane road. In places two large modern cars cannot meet and pass each other safely unless one stops. Our once rural area is over-crowded and parched. The local school is bursting at the seams. That's what he means.

In America, there is lots of open space and the refugees are more like a trickle than a flood. Here in Central Europe--without large oceans to both sides--the decisions about compassion are getting harder. 

"What we do is be the kind of people we want to be. I don't know if we'll survive, but I won't send innocent people back to die at the hands of terrorists and I won't support putting children in cages." That's my answer. Not a great one. Principled but light on solutions.

My husband has always espoused humanist values and I realized that this past year he has not wanted to talk politics and social issues the way he used to. He hasn't just been prickly at me. He's frustrated, even hopeless. He turned his face away, but he still had lots of words--loud and angry words and none of them constructive. 

When he quieted, I gave him what little scrap of hope I still have. "When I was a kid in the 1980s, the intellectuals and activists--the people like we are today--were convinced there would be a nuclear war. A lot of people really believed my generation wouldn't grow up."

He nodded and let me speak for once. He had been on the other side of that possible war in the old East Bloc and doing  mandatory military service for a totalitarian Communist regime for part of that decade. 

"But it didn't happen. Then there were parts of the ocean that were technically dead. Environmentalists believed they would take centuries to recover. But they recovered faster than expected. Now if you look at climate change and migration, the bare facts are grim. It looks like we're headed for massive disaster in a few short years. And it is a very serious situation. We have to do what we can. But the earth regenerates better than the bare facts indicate. It's about resilience. I don't know what will happen, but it is likely to be something no one is predicting right now."

For once he didn't argue or criticize. I can't say I gave him hope exactly, but for a few days afterward things have been more peaceful at home. The rain helped. We walk around each other on egg shells, trying to be polite and considerate in the hectic schedule and amid the needs of the troubled children we've made our family with.

Each day we choose our own qualities, our soul, our values.

If we choose to put children in cages today or put up razor wire to keep out starving refugees, we become that. If we choose to struggle for what we can, to fight climate change with our garden beds and bicycles and hand-lettered signs, to fight drought with rain barrels, drip lines and solar panels, to fight hunger with lentil soup and tortillas and to fight despair with stories and songs, then that is what we become. 

Are we choosing to live our values and thus make our own survival harder? I don't know for sure. I only know that survival without meaning is the road to depression.

Political correctness, dismantling the English language or reclaiming basic decency

Donald Trump--with the help of a few like-minded fellows--has unleashed an on-going tidal wave of racist, able-ist and sexist muck by giving bigots a socially powerful role model. This may allow us to see who has been secretly resentful of modern realities, such as black people are no longer their slaves, disabled people appear outside cages and women can vote. But I'm not even sure that qualifies as a bright side.

At the same time, it feels like many of us are doing the equivalent of using Trump's famous paper towels to clean up Puerto Rico, dabbing up droplets that somehow splashed all the way to our homes in distant states. I'm going to get some flak for this from people I really do agree with on everything that matters, but there are times "political correctness" has become ineffective, has been hijacked by people with an oppressive agenda or has become a game piece for social jockeying. 

Author portrait.jpg

The term "politically incorrect" implies that the use of a word or idiom is a problem only because it is incorrect from the standpoint of politics, i.e. it wouldn't be a good idea to say that if you want to be popular. This is the reservoir that stored up all the resentment which fuels the tidal wave of openly bigoted remarks both in public and in private.

The irony is that the people who are now claiming not to be politically correct actually were the only ones being politically correct in the first place. They were refraining from saying things they truly believed in order to be socially acceptable.

By contrast, many of us were never politically correct. We didn't use the N-word because we felt it is disgusting and demeaning both to Black people and to anyone who uses it. We didn't use the R-word because it is filthy, and much more than an F-bomb, it actually does real harm to children in schools all over the English-speaking world. 

It isn't political correctness that should keep a person from using insulting, disgusting, demeaning, hate-filled and violence-inciting terms and idioms. It's basic decency. 

So let's call it what it is. When the use of indecent and bullying terms is labeled "politically incorrect," an implication is made that this isn't actually ethically wrong, just politically unpopular.

When I realized as a young person that the verb "to gyp someone" is a slur against Romani people, it was not difficult for me to remember not to use it ever again. It immediately took on such a disturbing connotation that I simply stopped, even though it was common slang used in the rural area where I grew up.

I learned some years ago about the origins of the rhyme "Eenie, Meenie, Miney, Mo"  in the slave trade and it only took reading about it once to make it very uncomfortable to me. It is not the disapproval of others that makes me cringe and redirect children in my ESL classes who start singing it, but rather my own understanding of the facts and my sense that it assaults the self-respect of anyone who knows its history. 

There is such a backlash against the concept of taking care not to harm those most often excluded with thoughtless words that it has become politically correct to insist that one is not politically correct. Put another way, political correctness is merely a term for what is believed to be widely supported.

This backlash comes, unsurprisingly, from some of the same sources as the current tidal wave of bigoted rhetoric. I recently ran across a list of mostly fake "politically correct" terms on the website of the far-right British National Party. The list was not presented as humor but rather as information to help readers avoid conflicts, and therefore implied that these terms were truly advocated in mainstream society. Mixed in with real examples of polite language, the list gave rise to many claims about how ridiculous the movement for inclusive language is. 

Among listings suggesting a person use "gay" instead of "homosexual", "sex worker" instead of "prostitute" or "homeless person" instead of "tramp," there are fictitious listings advising readers to use "ethically disoriented" instead of "dishonest" or "nasally disturbing" Instead of "smelly." The point is to manipulate far-right readers to believe an exaggerated and patently ridiculous version of inclusive language.

Unfortunately, this manipulation is made easier by some activists for social justice who don't differentiate between confusion, customary idiom and even honest ignorance on the one hand and blatantly harmful, hateful and bigoted terms on the other. If we equate a person not knowing whether another prefers the term "Black"  or "African American"  with intentionally racist slurs, we cheapen the experience of those who encounter the real deal. If we equate a deaf person being called "hearing impaired" when they prefer "deaf" with the R-word, we make it much less likely that disability activists will be taken seriously.

It is reasonable for a group to request that society refer to them by particular terms and refrain from others. Trying to comply is good manners, but not complying is the equivalent of neglecting please and thank you. It's rude if you know better, but it isn't the same as being a morally degenerate bigot.

Not everyone has equal access to information and social interaction. And groups are not homogeneous in their requests. Trying to politely use the terms a group requests is admirable and difficult. If a person uses a term we dislike but their intent is obviously not insulting or demeaning, that should be handled in a much different way than the use of intentional insults. 

To cane or not to cane.jpg

The case of "blind"

I was recently asked to personally weigh in on one of these terms on a public forum. That was, of course, about the word "blind." While most deaf people and their organizations today have been very clear that they prefer the world "deaf" and do not like the term "hearing impaired," many blind people swing the other way, saying they don't like the word "blind" and would prefer the term, "visually impaired." 

In my view, abled people can be forgiven for being confused about this. I appreciate those who try to politely use the preferred terms of whichever group they are talking to. And I beg everyone involved not to make this into either the privilege olympics or a verbal fight. I appreciate our need to define our own identities, but let's not forget the fact that thirty years ago, when I was growing up, we were all mostly just referred to with the R-word. 

I was born legally blind and I have been active in disability rights organizations and efforts since I first learned to read nearly forty years ago. I have been a vehement advocate for the integration of people with disabilities in schools and for non-discrimination in employment. 

I have also been the target of just about every insult and slur against people with disabilities that exists in at least four languages. A stronger reaction to such insults, you won't find.

We don't need to stop pushing for respect just because we've rid ourselves of the worst insults. We can and should progress to defining positive identities for ourselves. However, what we are experiencing just now across the United States and around the world is a reminder that the bulwark against hate and bigotry is a barricade that must always be guarded.

There will never come a time when we can say, "The N-word and the R-word and their ilk are dead and buried. We can now turn to more subtle exclusionary terms and bury them the same way."

That is because they are a different species. "Retard" was used as a vicious insult. Several other terms were also used to put people with disabilities in institutions, sterilize us, deny us education and kill us. Those words, like the N-word and similarly vicious racial slurs are not even in the same dictionary as "blind" and "hearing impaired," which aren't and weren't widely used as insults and which have regular definitions.  

Sometimes "blind" is used as an idiom meaning stupid and ignorant. (Examples: “That politician is just a blind idiot.” "He was blind drunk.") There is no context here meaning something related to senses, just to intellect. This tends to equate blindness with intellectual deficits. If someone is stupid or ignorant or uneducated, call them one of those words, if you must. It isn’t cool or necessary to insult people with physical or developmental disabilities by comparing bigots, the willfully ignorant or bullies to us. Even if these idioms are often unconscious, they can be harmful over the long-term and it is reasonable to ask that they be avoided.

However, I can't personally support calls for the word "blind" to be discontinued in general in favor of "visually impaired." Some partially sighted people, especially those who have not been visually impaired their whole lives, really do object to the word "blind" and if I know that about them, I will try to refrain from using it around them out of personal courtesy and respect.

But it's a word with a definition that has not been profaned by common use as an insult. When it is used with technical accuracy, it has my support. And attempts to draw an equivalence between such a term and much more grievous abuses of language are unhelpful and potentially harmful. 

That's just the opinion of one visually impaired person. Due to my very poor sight--less than ten percent of the "norm"--I'm on that line where I could be called "visually impaired" or I could be called "blind." I often use the term "legally blind" if the point of the conversation has to do with official status as a person with a disability, rather than someone who wears corrective lenses but is not disabled. 

But if someone refers to me as "that blind lady who does herbs" or something of the like, I'm not offended and I don't see any reason to correct them any more than if they had said, "that blonde lady who does herbs." Both are technical descriptions and if someone in the conversation doesn't know my name, they are simply choosing the easiest way to identify me. 

The use of a term like "blind" all depends on the context, tone and intent both when using the word according to the dictionary definition and in idioms

I don't get on anyone’s case about using expressions like, “The blind decisions of the CEO drove the company into the ground.” It’s an idiom and the focus is more on the decision being "short-sighted" or lacking in long-range information, rather than on it just being stupid or unaware. Blind people are not stupid or unaware. We do, however, often lack visual information.

In a sentence like, “the blind obedience of the cult followers is creepy,” the idiom means that the followers don’t consider anything external and act ultra focused, as if they had blinders on like horse going through a tunnel. And yes, "blinders" is another thing that is just a word. I'm not going to stop saying "blackboard" or "whiteboard" if that is the actual color of the board. And I'm not going to stop saying "blinders," "blindfold" or "blinds" on a window. These are not demeaning and don't make people subconsciously think less of any group. 

If someone loses their glasses and laughs about being “blind as a bat” or gets new glasses and moans, “I’m going blind.” I’ll probably slap them on the back and chuckle, “Don’t worry. You’re in good company," even if their glasses are really nothing to moan about. The ability to laugh at one's self is a key survival skill.

But there are situations where the tone or context is hostile. I’ve had people say “I’m going blind,” as an excuse to deny me a seat close to the presenter at a workshop, when they just wear glasses that fully compensate for their minor vision impairment. I can’t count the times someone has lashed out with, “Are you blind or something?” when I failed to recognize their face or read an instructional sign.

I'm fine with the word "blind," in appropriate idioms, in factual description and even in good humor. I am also fine with "visually impaired." I am fine with the word "disabled." I prefer terms that demystify and inform without being insulting. 

I dislike euphemisms. I do not like the term "visually challenged," except in good humor. Vision isn't that much of a challenge. I just don't have that much of it. A challenge implies that if I just tried harder, I might be able to see more. Not gonna happen.

I also don't like the term "handicapped," which comes from a racing practice in which superior horses had to carry heavier weights. I know the term was used to denote people with disabilities as a way to imply that some higher power chose better people to deal with the difficulties of disability. I find the connotation unhelpful because it implies a justification or reasoning, rather than just the factual lack of a certain sense or attribute which is the fact.

I have always felt that actual disabilities are not the primary problem we face, but social stigma, reasoning and machinations around them. Let's keep terminology to the facts and keep society's interpretations out of it as much as possible. Those who argue that their issue with society is not a "dis-ability" because they don't lack any particular ability but rather have a different way of functioning are welcome to avoid the term "disability" and I'll still advocate for their rights to be respected as simply different. 

But not all visually impaired people agree with me. Some truly prefer the softer, euphemistic terms. To me they imply that visual impairment or blindness is something too horrible to say right out or conversely a challenge that I should just overcome on my own without society adapting at all. To me it is neither. It is a lack of a specific sense. It doesn't define the whole person, any more than some other single characteristic, but it is a piece of information that matters enough to be mentioned.

It is my hope that those asking for inclusive language changes can be kind, tolerant and inclusive when asking for them and not assume those who don't know mean harm. I also hope that time will change our language to be more inclusive and technically correct, rather than euphemistic.

We don't need to soften facts. We need to open-minds to the reality that those facts are not a curse.

How sure are you of right and wrong?

Thirty years after the war was over, a young father and history buff bought the shell of a house in the hills near a hotly contested border. He was a poor factory worker, but it cost only the equivalent of a month's salary because the old stone and timber dwelling was in desolate disrepair and the local fire department had been planning to destroy it in a practice drill. 

The new owner started to rebuild the house bit by bit. He wanted his children to grow up in the beautiful natural surroundings and he loved to learn about the tragic history of the land. He saved to buy new tools and materials and slowly over many years he rebuilt the old house to look like the pre-war photographs in the village archives. 

 Creative Commons image by Heather Katsoulis

Creative Commons image by Heather Katsoulis

Then one day after the border was reopened, a middle-aged woman approached the house. She said she had lived there as a child, that the house belonged to her parents. Forty five years earlier when she was a child, militia men had come with guns and forced her family to flee. The armed men had stolen the family's bicycle, their only means of transportation, and forced them to walk over the mountains into the neighboring country with only those few things they could take with fifteen minutes warning. 

This is a real story. I knew both the man and the woman. They are real people. It's the kind of story that happens on contested borders. 

Ordinary people looking for a place of home and safety buy or stake a claim to land and homes. Other ordinary people are caught on the wrong side of a political, national, linguistic, racial, religious or economic divide are killed or forced to leave their homes. And so it goes.

And now tell me this. Who should own that house?

Should the man own it? He bought it with his hard earned wages, worked on it with his own hands and saved it from destruction. 

Should the woman own it? She was an innocent child forced to flee her home and she still has the birth certificates, deeds and other documents to prove that she should have inherited it. 

Your answer will probably depend on which border, which side of that border and which war you think I'm talking about. This isn't ancient history but a relatively modern and well-documented situation in which most of the questions can be answered. 

Take note of your instinctive answer and then consider whether the following facts change it.

The woman was part of a German-speaking minority and the house stands in the border region of the Czech Republic, then Czechoslovakia. The war was World War Two. Hitler annexed this border region of Czechoslovakia at the beginning of the war and the German-speaking minority was noted for significantly supporting the Nazis. 

That was the reason for their mass expulsion. Many, probably most, of the woman's group supported and cheered on the Nazis. And so--brutal and indiscriminate as it may have been--some people justify the forced expulsion of German-speaking people from Czechoslovakia.

But this woman was a child at the time, living in a remote rural cabin, no more to blame than any other child and less powerful than some.

I tell this story not to win sympathy for the Sudetten Germans. But rather to promote the practice of skeptical, mindful ethics.

If you were sure in the beginning of the story that the new owner should be compensated but the house should be returned to the old owner and then you changed your mind based on the added facts, you must admit that moral certainty is hard to come by. 

We want children of about ten years old to "know right from wrong." And yet educated and caring adults often find it difficult to say exactly what is right or wrong in a complex situation and which way the scales turn can depend on details that require an understanding of social, political, economic and historical forces. 

I don't personally have a definite answer for which is right or wrong in this real-life story that I stumbled upon as a teenager new to Czechoslovakia twenty-five years ago. The law here has retained the rights of new owners in that case. The man's claim is upheld by the law. But if the house had been confiscated by the Communist authorities and the family expelled after the Soviet invasion in 1968, the law would favored the old owners.

The law is not ethics. It's just the law. And one would be naive to believe that laws are consistent. 

 Image by Arie Farnam

Image by Arie Farnam

I am happy to say that this woman did not demand her house returned or even seem bitter about the law. Instead she was thankful that the house had been preserved and reconstructed, so that it looked much like her beloved childhood home. The man invited her to come and stay and lovingly helped her to reclaim her memories and a family treasure buried on the property. Theirs was a story with a happy ending.

But so many similar stories are not. 

The past few weeks have had me thinking a lot about ethical dilemmas. The news has hit on story after story in which passions run high and there is more than one side with a claim. 

It isn't that I don't have strong opinions. I can clearly say that the killing of unarmed Palestinian protesters by Israeli soldiers is wrong, even a crime against humanity. But what exactly should be done to solve the situation? Whose homes should be sacrificed in a small country with limited land and water? 

That isn't so simple. One way or another in our crowded world, there are people in need without homes, often with a valid right to the land or homes where others, including those innocent and unaware of any injustice, are now living.

My entire native country is based on stolen land. And yes, we can say that those who have been wronged should be compensated, but by whom? Some of the descendants of those who stole from or enslaved others are wealthy from the profits of exploitation. Others are barely scraping by. And yet if there is a debt to pay, shouldn't everyone be required to pay all the same?

Even the question of the infamous Chinese prom dress leaves me befuddled. A white girl decided to go to the prom in a traditional Chinese dress, which she wore in inappropriate ways and seemed to mock in one photo. Many people are furious over this. It's called cultural appropriation, taking something from another culture, particularly one that has been exploited by your own in the past or present, and either claiming it as your own or using it inappropriately or mockingly.

Don't get me wrong, I can't abide people who set up shop as a "Shaman" or pen books on Native American spirituality who have no legitimate connection to either Siberian or Native American culture. Making a profit off of a stereotyped fakery poached from the struggling remnants of cultures nearly destroyed by exploitation is clearly wrong. 

But as I put Vietnamese spring rolls made with my own fresh garden greens down on the table for my children, while wearing a shirt with Guatamalan patterns, I am not so sure where the line is. I know where these things come from. I love them and treat them with respect. I want those cultures which have been endangered to be represented and kept alive. And I simply prefer the cuisine and color coordination of some cultures over others. But I can't say in every instance what is right and what is wrong.

If the girl with the Chinese prom dress had not publicly shared a mocking photograph of her dress, would it still have been wrong? Western prom dresses are, in my not-so-humble opinion, a fashion travesty of modern times. Please any culture that is willing to save us from them, please  step forward! Despite the problems, I still say the Chinese dress was the--hands down--prettiest in those photos.

Looking at all these less-than-clear-cut situations and modern problems, one is tempted to say that it all depends. Certainly, we should be critical thinkers and respect the opinions of others. It is tempting to say that there is no absolute right or wrong. Even when we teach children right from wrong when they are ten years old, we end up pointing out that a child in a storybook who steals food to survive is not really so bad. 

But these are terrible times to abandon ethics and claim moral relativism. Are the opinions of Neonazis equal to all other political opinions in political discourse? And if not theirs, then where is the line? 

We live in a time when political leaders preach an extreme religious doctrine and claim to be for high morals, while dallying with pornography, blatantly lying, taking and giving out huge bribes, poisoning their rivals, fixing elections and claiming it's legal, and abusing anyone vulnerable they can touch--without the scandals even making a large ripple. Gods help us, if we don't even know what is right and wrong anymore ourselves. 

Many intellectuals I have discussed this with say that an opinion is valid in so far as it is not against someone else or does not harm someone else. That seems like a good rule, but it is easier to to say than to apply.

Among the most vicious arguments I have seen in the past few days have been over the silent and non-violent actions of people protesting what they saw as deeply wrong. A week ago, dozens of graduates and their family members silently stood up and walked out of their own graduation ceremony at Notre Dame in protest as Mike Pence gave a graduation address.

When questioned, the protesters specifically mentioned Pence's support for extreme racist organizations and for Donald Trump's rabidly anti-Muslim policies. Pence is also noted for pushing extreme religious agendas and promoting the interests of large corporations, specifically the Koch brothers, in public policy. But regardless of whether one agrees with the reasons the protesting students walked out, the vicious verbal attacks and threats against them imply a certainty of the wrongness of protest. 

Pence himself called the banning of athletes who kneel to mourn the killing of unarmed African Americans during the National Anthem "winning." There is no question of right or wrong in that statement. It implies a game with winners and losers 

The actions taken to penalize the protesting and mourning athletes and their teams and the words often deployed against them are extreme, while their actions are mild, respectful and silent. 

I can understand a parent being upset if their child walked out of graduation to protest something the parent didn't understand or feel is important. I can even understand people brought up to believe that the National Anthem is sacred disagreeing with someone kneeling during it. But none of these are violent acts that harm another, and yet violence is threatened against those who take quiet actions in defense of their ethics. 

There are plenty of situations where I cannot say with certainty that I am right and another is wrong. Ddetails and historical context do matter. But I hope we will not lose the most basic concepts of right and wrong through this. If a person quietly stands, sits, walks or kneels to protest violence and hatred, they should have that right. I may not always agree with their side of the story, but I can always respect a quiet statement of ethical concern.

No comparison: Privilege is a big deal

It's one of the first warm days of spring. The kids are playing together for once, instead of tormenting each other, and I'm taking full advantage of the moment, turning the soil in garden beds and planting peas and carrots as fast as I can.

Then I hear a horrible screeching from the empty lot next door. There are words in it, though barely.. "Get out... like rats... this is ours." 

There's more but that's enough. It's an adult voice yelling but it is followed by the shrieking laughter and pounding feet of children, fleeing from the sounds of it.

I put down the shovel and strip off my work gloves. But I don't have to search far to find the kids. They are breathless and covered with fresh black dirt. I pry the story out of them. The neighbor lady from down the hill, someone who wants nothing to do with us, yelled at them for playing in the empty lot. 

"She said it's hers but it's not!" my nine-year-old daughter fumes.

 Creative Commons image courtesy of Stefan Lins

Creative Commons image courtesy of Stefan Lins

She's right in that the lot belongs to an absentee landlord and local law supports  recreational use of unfenced land. I pry further though and learn that the children discovered a nice tall dirt pile in the empty lot and they were "sledding"  down it.

Thus the condition of their clothes... and no doubt the reaction of the neighbor.

I explain that the dirt pile probably does belong to the neighbor, even if it's in the empty lot. The kids are unrepentant. They don't understand about the need to keep a load of dirt in it's pile, not spread all around and packed into the sand and weeds. My daughter refers to the neighbor lady in distinctly disrespectful terms. I reprimand her but part of me is also livid inside.

Rats? That's what I heard the lady shriek at them and my stomach is roiling--not with anger so much as with fear.

The kids also don't understand the potential consequences of getting into trouble with the neighbors in this little town, which is already not particularly friendly to children with olive skin and dark-lashed, "striking" eyes. The kids from our street--otherwise all particularly pale white--roam around freely and I've never heard the them scolded by a neighbor,. But my kids seem to run up against hostility on a regular basis. I don't think my kids are exactly angels, but this was the first time I'd heard of them doing something harmful off of our property..

Having a mixed family has enlightened me about many realities I did not used to understand, such as the heightened risk of trouble kids of color run and the fears of their parents.

Most white people don't grok "white privilege" because it is a term that encompasses things that we not only take for granted but feel are merely the way life is. If you go to a coffee shop in clean clothes with money in your pocket and wait for a friend, nothing negative will happen. You go golfing and you just golf. You walk down the street, shop, get in your car and talk to your kid's teacher and it's all placid and uneventful. If you're a kid and you slide down a dirt pile, you might get told off but that will be the end of it. 

To white people this seems like life as usual, simply enjoying the experience of a peaceful and prosperous society. The hitch is that this experience of peace should be for everyone.

After nine years, I know that it isn't.

There was the time my son pushed another kid and nearly got expelled from preschool, even though the teachers agreed that sort of thing happens every day among the boys and my son is no worse than any of the others. He did get banned from school once over ant bites on his knee and the resulting concerns over contagion from "dirty people." My daughter came home at four years old crying because people called her "black" and she was terrified that meant she was going to turn the color black. How was she to know that olive-skinned Roma are sometimes called "black" in lily-white Central Europe?

So I give the kids a lecture I never got from my parents, my voice low and deadly serious. "You treat adults with respect! Period! Do you hear me? You listen and speak respectfully to adults. I don't care if you think the lady is wrong. You apologize and walk away. That's it."

I never needed that lecture, even though I was a wild kid who chased the neighbors cows. I was white. Now I feel like I'm channeling the father in Roll of Thunder, Hear My Cry. 

On the weekend my Nigerian friend from the city comes over and confides in me the struggles of dealing with white teachers in the Czech schools. Her youngest son is under constant attack because a teacher insists he is "dirty"  and doesn't have "basic hygiene habits." 

She's honestly confused. Sure, he sometimes has to be reminded to wash his hands. He's only five. But he willingly goes to wash if told and he's quiet and respectful to a fault, which I envy. 

But I know the Central European short-hand. Whenever they want to question the presence of a child of color in the classroom they default to concerns over "basic hygiene habits." It's like a code phrase. 

 Creative Commons image courtesy of C. Thomas Anderson

Creative Commons image courtesy of C. Thomas Anderson

This year we are more and more aware of the entitlement and privilege that fuels injustice. It is good to see awareness growing. More and more people are seeing privilege and entitlement for what it is--the driving force of deeper injustice. 

The weekend is over and the kids are back in school. On Monday afternoon I get on my electric scooter, which helps me get around since I can neither drive nor walk long distances due to disability. This is how I pick up my kids from school and do the shopping The scooter can move at a walking pace and stop instantly. It works well, even on the narrow sidewalks in our small town. 

The kids walk downtown next to me, except when we have to go single file in the narrowest spots. My daughter has a dance class on the town square. My son and I go into the delicatessen next door to get him a sandwich. The nice man behind the counter greets us in English. We chat back and forth. His English is really quite good.

Then another man--fifty-ish--walks in and stands at the counter. Before our acquaintance can ask what he wants, the newcomer says loudly to the cashier, "Why don't you tell that lady there to get off the sidewalks?"  

My heart starts pounding. Again I am not offended, so much as terrified. This is what I have feared, since a few angry people started yelling at me on the street. I have been so careful, making sure to yield to anyone on foot. The sidewalks are narrow here after all and I'm not certain about the legalities of my situation, since my mobility device isn't actually a wheelchair.

The man behind the counter looks stunned, his eyes wide.

"Please, sir,"  I say to the belligerent customer in as conciliatory a voice as I can muster. "Please let me explain. I'm legally blind. I can't go in traffic. And I can't drive a car." 

The man turns toward me a bit. "I know," he grunts.

"We live on the edge of town. It's two kilometers to get to the pediatrician or the post office," I stammer.

"I know where you live." His voice is gruff and unforgiving.

"I have problems with the bones in my legs and I can't walk all that way. That's why I ride that scooter," I explain.

"I know."  

"I'm very careful. It doesn't hurt anyone." 

His tone has become a bit less confrontational at least. "I know all that. I just think you shouldn't take up the sidewalk." 

"I'm very careful. I always let other people go first if the sidewalk is narrow." 

"Whatever."  He has managed to make a purchase during our discussion and he walks out. 

But the fear is still there. I know my situation is precarious. The local police could forbid me to use the scooter on the sidewalk, since it isn't officially a wheelchair and I can technically walk. I just can't walk two kilometers without significant pain. If these grouchy people complain to the police or if I make a tiny mistake, the consequences could be severe. 

I understand now that it is the same for my kids, even without a disability. Where white kids would get away with a scolding, they could be reported to the police or expelled from school. The stakes are higher and the stress is chronic. 

What does the "all bodies are beautiful" message actually tell our daughters?

"Everyone says you're ugly anyway." 

It's just been that kind of week and this was my nine-year-old daughter's response to the standard mother-daughter talk about how all body types are beautiful and true beauty is in our hearts and actions--you know, those modern truisms that we pass around to try to feel good and keep the horrible self-loathing at bay. 

She has mentioned this before. The first time she came home with tales about what other--kids and some adults--say about me. she was six and there was hurt in her eyes. But she's over it now. Now she has internalized the social norms.

Arie teaching 4.jpg

"What if I get fat?" she asks and there is terror in her voice that runs deep... so deep.

I grind my teeth. I don't know which part to react to first. Her terror infuriates me more than anything. This is what scares you? Not failing a test at school, not monsters, not climate change... she's terrified of getting fat?

I want to tell her first off that if she gets fat, she'll be fat. So what?

She'll have lap-room for more than one kid, she'll have glorious curves and she'll look like an ancient goddess figurine. She'll also be more likely to have knee problems, heart problems and other health issues, if she gets fat. It's not all a goddess picnic. But I also want to scream at her and tell her to get worried about something worth worrying about.

And at the same time, when I see that terror in her eyes, I want to snuggle her close and tell her that she is very unlikely to get fat. I'm her mother, but she doesn't have my genes and she's physically active, loves salad, already wants to be a vegetarian and shows absolutely no signs of gaining any extra. You can't help but want to sooth terror, even if you know that the very soothing is insidious psychological poison.

My body is thick and heavy. I walk a couple of miles a day on average. I can't drive a car because of my vision impairment, so that's just what happens. Recently I've started using an electric scooter because of problems with the bones in my legs. So to get exercise I run on an elliptical machine. I also garden heavily and run herd on hyperactive kids. My Apple Watch at least thinks I have a pretty active lifestyle. 

My genes couldn't care less. A physical therapist recently shook her head over my legs, saying, "Looking at the muscles in your legs, you look like an athlete." My legs are mostly hard muscle, except high on my thighs where the muscle is covered with a layer of fat. And higher still, I carry a round Buddha-belly worthy of a goddess figurine. 

But that isn't the only reason my daughter hears people--both kids and adults--make negative remarks about her mother's body. My eyes have a permanent and severe squint, because I've been legally blind since birth. My pupils move erratically and I'm told it is disconcerting--to say the least--to fully sighted people. 

Given all that, it isn't very inspiring to try to be a fashion queen. I've been lucky to find good, professional clothes that fit me in the last few years. It probably isn't all the latest fashion and features a lot of slimming blacks and dark blues, but I just get dressed, make sure everything is clean and wrinkle-free and go. 

I don't wear make-up. No amount of make-up is going to make my eyes appealing and I'd rather not emphasize the issues. My face has an unfortunate habit of turning red when I'm excited or exerting myself. But I'm not crazy about the chemicals in most affordable make-up and hair dye, so my hair is going gray, which I actually find rather pretty in my own non-standard assessment. I personally don't like the look of make-up either. So some small part of my appearance is personal choice. 

 Creative commons courtesy of Lisby of Flickr.com

Creative commons courtesy of Lisby of Flickr.com

But I'll be blunt. I have never gone out in public dirty, smelly or with uncombed hair or even with rumpled clothes. And yet there are enough people saying negative things about my appearance that my terrified little girl says, "Everyone says you're ugly." And this is when she is in a somber mood, not when she's mad at me.

This isn't just a two-way relationship between me and my daughter. This is a three-way conversation and one of the three sides is the commonly expressed social norms of our society.

But society likes to pretend that it has no part at all. Every day or two, some version of a feel-good, "every person's body is beautiful" meme comes across my social media feed. There is never any discussion around these, just a lot of hearts and thumbs up and smiles. No one ever mentions the reality of having a body that is widely seen as distinctly unbeautiful--a physical disability or illness or a shape or a face that doesn't conform to current--or any--beauty standards. 

Those memes make me as sick as the rest of it. I know the people who send them, generally mean well, but mostly they do not open their professional or social circles to people who are considered less attractive no matter what their memes say. We like to say it doesn't matter, but it does matter--to what kind of job you can get, to what kind of community involvement you can have and to how you are treated on a daily basis in simple things like the grocery check-out line. 

This past week one such meme was specifically about communicating this universal beauty myth to our daughters. I have said it to my daughter many times, the same sentiments as in the poem. I tell her how grateful I am for my body, for the health and energy that come from healthy living.

We are almost never sick in this family, even though we are four people and none of us is actually genetically related to any other. It astounds the pediatrician that my children and I stay so healthy through the winter while their classrooms are only half full due to illness. We probably do have some genetic luck, but it is also the result of good nutrition, activity and careful use of medicinal herbs. 

I am thankful that my hands are nimble and strong, that I can sew and build a rock wall and do a great many other things. I am thankful for what vision I have, even if it's supposedly less than ten percent of "the norm." 

I tell my daughter that each of us is beautiful. She hears how beautiful she is every day from strangers. Her big magnetic eyes, completely unblemished skin, thick curly hair and slim, muscled frame are all exactly what society applauds. But I tell her I am beautiful too, because that is what we have been taught in my generations that we should say. 

But if it is true, it is only because I personally choose to see beauty in myself. While some specific feature of my body, may be considered favorable to someone else, it would be disingenuous to say that my body fits any other idea of beauty. 

Irritating meme about how everyone is beautiful.png

And I would not care much, if we lived in a world where appearance wasn't so crucial, where physical beauty wasn't a hiring requirement, a social gatekeeper and something strangers comment on  to small children. Everyone has their strengths and weaknesses. We don't pretend that everyone has a great singing voice or amazing math ability or spectacular writing skills or huge sports talent.

But we like to pretend that everyone is physically beautiful. 

Why? I'm not sure. Possibly because we actually believe deep down that physical unattractiveness is the last truly shameful flaw--that while it isn't a person's fault if they are tone deaf or bad at math, that it would be a person's fault if they were ugly or fat. And so we must never admit that such a thing is possible or we would be blaming that person.

Finally, last week I broke down and said as much on one of these memes--with not one word of profanity, caps or insult to anyone except the generalized norms of society. And the response rocked me back on my heels and sent my head spinning.

I was met with one of those social media hate storms, in which I was told that I need my head examined and several less flattering things. A group of friends ridiculed me and joked at my expense. Then the person who posted the feel-good meme threatened to use their position to have me banned from a spiritual group I belonged to. 

These were the words that sparked that storm of hate: "I’m thankful that my body doesn’t get sick a lot, thankful that my hands can do a lot of things, thankful for energy to do the things I want to do. And I acknowledge that everyone has strengths and weaknesses.  If someone came along and asked me if I would trade my writing ability, my mental ability and my inner world of curiosity and fun and fantasy for a body that people would honestly say was beautiful, a body that could get around freely or ski or drive or sing or dance or just not make my children ashamed, I would still turn them down. I don't want to hear platitudes about how everyone is beautiful unless people are actually friends with those whose bodies are far from perfect, friends enough to meet at a place where they can get to and in the door, friends enough to spend time, and share the enjoyment of life with people who don't fit common beauty standards."

I wanted to open up a discussion, but somewhere I touched a nerve, something that must have struck home enough that it could not be allowed. And the result was a stream of hateful messages at me and ridiculing messages about me to others. It's the way social media is and one has to be prepared, if one wants to engage in conversations there. But let's not kid ourselves, social media is only more brutal because people are more likely to speak their minds and dispense with politeness. The opinions expressed on social media are what people really think.

While we often--on and off social media--claim that all bodies are beautiful, the messages we and our children absorb from this enforced cheeriness is much less supportive. Children, who are more attuned to actions than words, hear something like this: 

  1. Physical attractiveness is the most important measure of worth.
  2. Don't question the social norm, if you don't want to become a pariah.
  3. And always smile and put on a good face, even if you feel desperately sad and terrified inside.

That I think is a terrible thing to tell ourselves or our daughters and sons. Here is the message I would like to replace it with, one that does not tell half truths or require suspension of one's knowledge for a moment of fuzzy inspiration: 

Friends, children, old people, people all over the world, homeless people, refugees, bankers and presidents, gay people, straight people, black, brown and white people, wheeled people, stick people and running-all-around people, I mean all of you.

Your worth is not defined by your appearance, by your brain, your body or even by your abilities, by your wealth or sophistication or even your manners, by your country, your house, your car, your ancestry, your social media rating, your popularity or your job. Your worth is defined by how hard you strive for something beyond those trappings, by your passion for something beyond yourself and by the depth of your relationships, rather than by their number.

You have strengths, no matter how close to rock bottom you've hit. You may not be beautiful, healthy, popular, smart and wealthy all at once. But there is something in you, that the world needs. You also have your weak spots. You probably are not beautiful, healthy, popular, smart AND wealthy, and if you are, you almost certainly have some other large problem. And that problem does not define you or make you unworthy.

You will in the end choose your own worth because worth can only be measured by things that a person can choose, not by those things that life hands to you. And another thing, that kind of worth cannot be quantified or compared. It just is.

That line between guts and a bad decision

I stood at the top of the red slope just where the relatively flat ledge drops off on the steep face of the mountain, forcing myself to take slow trembling breaths.

"Come on! You can do it!" the guide hollered up from thirty feet below.

My brain kept imagining the impact, the feeling of hitting the snow fast. My legs and back cringed from imagined crashes and the thought of an unwary skier slamming into me from behind.

"It isn't that much different from the blue, You're ready for this!" the guide tried to reassure me. But his hazy, darker shape on the glaring snow was rocking back and forth in a way I recognized meant he was climbing slowly back up toward me. His movement and the touch of uncertainty in his tone both belied his confident words. 

Arie snow ski mountains trees - Arie Farnam.jpg

There was no one who could possibly say if I was ready for this. I was twelve and usually up for dare-devil stuff. But I was also legally blind and I had crooked legs and missing ligaments in my ankles. That guide had known me for all of an hour and a half. 

"I'm ready!" I called down to him. I was very far from sure that was true. But the one thing I was more afraid of than the red slope was being a failure.

He stopped rocking back and forth. I inched the tips of my skis over the lip of the ledge. I knew that wasn't the way to do it. I needed speed or I really would fall. 

I jumped a bit in the boots and dug in with my poles. Not much. You shouldn't be picturing anything very dramatic here. But I had just enough momentum to topple over the edge and into a hard snowplow and then a painfully slow curve. 

My knees and ankles screamed with pain, but I gritted my teeth. The guide lurched into motion and made the turn below me, calling out in that singsong that follows the contours of the land so a blind skier can guess the terrain ahead, "TuuUURN right! TUuurn leeeeft! Turn right! Turn LEeeft!"

The singsong grew a bit faster. The pain in my legs had spread so that there was no point that stood out anymore. It was all just a blazing ache. But they held. My legs held the V and the slope, turn after turn.

I could barely see my guide, a wavering gray shape in the undistinguished whiteness all around.  But despite my slowness, he stayed just far enough ahead and not too far, clearly having to plow himself to stay with me. 

Just as I sensed more than saw the looming darkness of trees on my left, a black shape flashed across my path, scraping the tips of my skis. I jolted and nearly fell but managed to stay up. 

"StoooOOP!" the shout was not abrupt like you might expect. It swooped just so that I knew how big a turn to make to stop and how the ground would rise a bit under my skis as I did. 

 Image by Arie Farnam

Image by Arie Farnam

I made the turn and stopped but my guide was gone. I caught the flicker of his gray shape below me, chasing another shape, then turning, forcing the other shape to the side. They were too far away for me to hear more than the low, angry tone as my guide chewed out the stunt skier who thought it would be fun to zip between me and my guide on our first run down the red slope. 

A moment later, he let the skier go and called up to me, directing me with tone over the humps and valleys of the slope and around an adult and child skiing together.

I made it down the red slope that day and several other times, though I never learned to like the red more than the blue. I loved to fly over the smooth white snow of the blue runs, where there are not so many moguls and almost no stunt skiers. 

That was one of five guides I worked with in three years of skiing in a blind skiers program as a kid. Some of those guides were spectacular in both skill and patience. Others struggled to ski so precisely and master the voice methods used to guide blind skiers at the same time. Either way. they were the difference between skiing and not skiing--i.e. the difference between a kid's long-awaited day of exhilaration and a kid's resignation to yet another "can't." 

I wanted to ski. It's hard to describe how badly I wanted to. I couldn't ride a bike fast or skateboard or roller skate, except in a small defined rink--and even then slowly. I knew I'd never drive. To me the only speed, the only feel of control and competence in the physical realm was skiing. And the guides that made it possible were among my childhood heroes. 

Most people who have never seen a blind skier and guide work together are skeptical or even disbelieving. "How could you ski? Even with a guide? Just how?" They'll admit that maybe I could, because I can see some. But I've known totally blind skiers who could do it much better than I can. 

It took three years of hard work for me to get to the point where I could tip over the lip and make it down the red slope reasonably well. It took patience and encouragement and not thinking about the dangers or how my dad broke both his legs skiing when he was a kid. 

But because of that training, I can ski after a fashion. It isn't pretty. It isn't nimble, but today I even ski without a guide on easy, well-known slopes. In the brief years of the blind skiers program I learned enough to last decades.

But now I'm over forty. My legs aren't just crooked. They're creaky. My calves are balls of muscle to compensate for the missing ligaments. And my eyes are funkier than ever with slowly failing retinas. And I still want to ski.

I don't much anymore though. It's too hard and too expensive. But I've skied enough to make sure my own two kids are better at it than me. This year I thought I'd miss out on skiing entirely, until I was called in to be a substitute teacher at an ESL skiing camp for Czech homeschoolers in the Krkonos Mountains. 

On Saturday, after classes were over, my husband and kids wanted to ski down from our lodge to a major ski area near the town of Rakovnik nad Jezirkou. This required entering the slope near the top and on a red run. Then I could ski to the bottom and ride the lift up to ski the blue slope thereafter.

My husband isn't quite like the intrepid blind-skier guides. He has all he can handle just to ski without having to turn his head back on every swerve to yodel the way the land rolls. So I just followed his fuzzy shape silently through the snow. To do this I have to fix my eyes on him and never look away. If I glance away, I'll never be able to tell which fuzzy shape is my husband again and other skiers don't do what I need them to. 

We came out on the red run and started down the crowded, ice-packed slope, weaving in and out among other skiers, while making my painfully slow curves. Then the run narrowed and suddenly dropped. There was no lip this time, just a hump and we were onto a sheer steep slope on a sheet of ice. And there was no more plowing or slow curves. I made one, lost my bead on my makeshift guide and went down on my back.

I tried not to think about the skis of people behind me cutting into me as I blocked the way. Instead I struggled to get up on the steep ice. But I quickly realized that probably wasn't worth the fight. 

"Good snowsuits are the better part of valor," I grumbled under my breath, lifted my skis in the air and coasted the rest of the way down the hill on my backside. My husband and kids were a bit embarrassed to be with me that day, but that was my call.

I've been told by eye doctors, that I'd better not fall hard anymore or get hit in the head or any such thing. If I do, I might well wake up not seeing anything. And crappy as my vision may seem to most people, it comes in rather handy to me. So I've finally become cautious in my middle age. 

All in all, I've never been particularly comfortable with that line, "You can do it!" Who knows what another person can or can't do. Mostly we don't even really understand what takes courage for another individual and we certainly don't know where the line between courage and foolishness might be for them. 

I'm the lady skiing along with less than ten percent of everyone else's eyesight. I skim over the snow on the blue slope that everyone else says is boring. And I'm flying. My heart is singing with my own version of freedom, while I avoid the red runs and never even want to go near the black.

So for whatever it's worth, here's my take.  Push your own limits, just enough to feel fully alive. There are things that really are dangerous and not worth the risk. The better part of valor is using your a brain... and good protective gear.