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. 

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

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.  

Slogging through to gratitude

What does the abortion debate have to do with gratitude? They both strike at the core of what type of spirituality you practice, for one thing.

You are probably as sick of the argument as I am. It rages on with passion, hate, violence and self-righteousness on both sides, though the facts surrounding the issue haven't changed in thirty years.

It isn't just about being "pro-life" or "pro-choice" depending on one's religion. There's the disability rights angle. There's adoption. There's overpopulation and environmental crisis. It is an issue with tendrils reaching deep and wide.

I'm a person with a significant physical disability. I can easily imagine the sheer rage experienced by those who live with disabilities that are widely considered "abortable," in that many people think a child would be better off dead than living "that way." 

I'm also an adoptive parent of two children who never went home from the maternity ward. Their birth mothers did have reasonable access to abortion as a possibility in a country with universal health care, but they did not make that choice. 

I might well have some strong opinions on this issue, but I find that I am not firmly on one side or the other.

I am a woman. Yes, I think women and all people should be allowed to make their own choices. I become irritated when men dictate what women should do with their lives. I know women who were raped and then shamed for it--assumptions made about them. I have a capacity for feminist fury.

But I am not pro-choice at all cost, even so. I don't think there is a clear line between unborn and alive. 

I'm not pro-life or pro-abortion in this. It is more that I am anti-back-alley-abortion. On the surface, it's as simple as that. I don't think abortion is any great thing. Overpopulation is a serious issue, but still if we respect any life we should respect all life. 

Yet I know the results of anti-abortion laws. Throughout history and geography they do not generally result in fewer abortions but rather in more risky abortions and more deaths from infection and accident. That's my primary stand on the issue in terms of society, laws and politics.

In terms of ethics... well, it does come down to religion for me as it does for many people, except my ethics are different from those preached by that brand of Christianity that is so sure of its single, universal "truth.".

In the most recent debate I witnessed on this issue, a woman was lecturing on scripture and the "fact" that God is the only one who can choose to give life or to take life away. She said that makes abortion wrong, no matter what, and makes the pro-choice stance immoral.

This was at least a calm and rational argument. The comments were kindly but firmly put--an assumption that everyone must agree with the scriptures running through the text. The only question open to debate was the interpretation of those scriptures.

But what if you don't accept the most basic premise. How so God is the only one who can take life away? What did you eat for breakfast this morning? If it contained meat or even eggs then you clearly participated in taking life away.

And what about wheat or vegetables? I'm looking at you, vegetarians on moral grounds. How can you prove that those lives--the lives of plants--are different and that you can take away those lives so that you might live but not another kind of life? I know there are lines in those scriptures taken to mean that humans are above the rest of nature, but again I do not accept those scriptures as proof. You must find something beyond human constructs to insist that humans are above all others.

I do understand that if one's religion takes the stand that God is something outside of you, not within each living being, then the issue of abortion becomes highly divisive. However, we have to accept that not everyone shares our religion and if they don't, then it makes no sense for them to be bound by the same scriptures.

My religion mandates that I have to work every day to ensure that I take no more life than I truly need, that I am not a force for needless death and destruction. I have to be conscious about the fact that other beings have to die in order for me to eat, have shelter, stay warm, read, use the internet and so forth. I have to try to give back in kind. 

And I have to give thanks, consciously and openly.

That's the law of my religion. Very few people follow this law and if I respected only people who do or insisted that all people must abide by it, I would be made ridiculous. I accept that it isn't the law of someone else's religion.

For me God or the Gods are not entirely separate from us. They also don't force anything upon us. In the end, every decision of ethical value is fully in our hands. If we had no choice we would also have no ethical responsibility. We are not forced to have a child by some external will of God and so we are truly responsible.

By being alive we make choices, including the choice to continue living. We choose and we must accept in every moment of our lives that we have come to the situation we are in through a combination of circumstances and our choices to accept or reject those circumstances.

All possibilities may not have been open to us. The poor have fewer choices than the rich. Money equals the ability to choose what to do with that wealth after all. But in the end, even the poorest has made choices. And morality is most basically about our acceptance of that.

We choose to take life in order to eat and thus to continue to live. This choice is made easy for us because we psychologically feel that the lives of those beings we eat are not the same as our own life. It is harder when the life is an unborn child and the need is not just to slake momentary hunger but rather the need to choose one's path in life. It is harder but both take away life.

Choose well and know that there is a cost.

You do not eat without the deaths of others. Only arrogance can claim that those lives--even the lives of radishes--are less important than your own. You accept this. You eat anyway and you try to live without needlessly taking life. That is all. You have no need to judge the choices of others in this question, which is ultimately between each private person and their gods.

Her War: The day the dream died

What goes through the mind of a parent in the moment when they find out that their child's difficulties are not "a phase" or something she'll grow out of? What are the thoughts of the captain of a tiny vessel with a crew of four struck by a hurricane? 

This mother sat in a park outside City Hall to hear the verdict of the specialist over the phone. The child, who she called Chickadee in moments of tenderness because she came one spring eight years ago to save the mother's grieving and broken heart, was with her. The mother made Chickadee sit on a bench a little distance away and gave her a tablet with games to play--a rare treat to keep her occupied during the call with the psychologist.

Creative Commons image by Paul Stainthorp

She was too young to overhear her own fate.

"I disagree with the findings of the previous report on her intelligence." Those were nearly the first words spoken over the cell phone.

The mother's heart leapt with momentary hope. She held her breath, waiting to hear that the child who had brought such joy and then so much chaos and conflict, was troubled, learning disabled, hyperactive BUT exceptionally bright. How many times do you hear such stories. She would fight for such a child, fight with every last reserve and--by all that is holy--they two would win. 

The next words hit her like a sucker punch. "In some areas she has average intelligence, but in many areas she is far below average. She may have the symptoms, but to be diagnosed with dyslexia, there has to be a certain minimum intelligence."

The mother kept notes, scratching at a notebook, frantically trying to record the specialized terminology, even though she would receive a written report. It felt like the only thing to do. She knew most of the terms. She had done piles of research already. She was one of those parents, the kind that take a threat to a child as a call to arms. She would document, read, discuss, advocate anything into submission.

"Very low scores in visual/spacial skills. Very low auditory processing, and short term memory is far below normal. That goes along with the attention disorder," the psychologist is not dry on purpose. She is hurrying between meetings, giving this mother as much information as she can in a short space. Her interjections are friendly, checking to see that the mother is following and not drowning in the information.

She says she is fine. She has the notes down, and she understands the terms from her research. 

But she is drowning. She doesn't know it yet, but she is drowning as sure as the captain of the tiny swamped vessel at sea--gulping in mouthfuls of brine and salt spray.

"She is very immature, half her chronological age. If she was four or five and she behaved this way it would be fine. She is very impulsive. She will need constant attention, careful monitoring at every moment."

The mother looks up and sure enough the child is not on the bench where she was supposed to wait. She gets up, turning around in the dappled sunlight of the park. The light and shadows blur before her eyes. She feels sick.

"She will have great difficulty copying from a blackboard. She cannot understand auditory instructions or information of any significant length. She will not understand lectures or audio books. She will always have difficulty reading. Yes, she should be tested for dyslexia anyway, but she may not have the intelligence for that diagnosis." 

The mother wonders if she herself will fall to the ground, but she doesn't. She walks by instinct. She knows where the child's impulses will take her. She has spent eight years connected symbiotically to this child. She knows her better than anyone else. She notices the path the child's distractable brain would grasp at and she goes down it. She finds the child on the steps by the rushing traffic. 

Safe. For now. No one picked her up this time.

"I recommend a psychiatrist, special education services, testing for reading disabilities. There may be medication for ADHD. You may be able to apply for educational accommodations.. The one positive thing is that she has some episodic memory. Sometimes I see individuals who can't remember much of anything. She can remember those things she experiences, but she will not understand anything abstract."

The call ends politely with tasks assigned to both sides and assurances of further contact. The mother takes the child's hand and they hurry from the park with promises of ice cream. 

That very afternoon, the school holds a ceremony, graduating the first graders as "readers." A local children's author visits and places wide turquoise ribbons over the children's heads. The children sing and the parents clap. Chickadee does not perform a poem alone, but a friend helps. They have developed hand motions to go along with it. 

Then the results of a standardized test are put up on the screen in the classroom. Reading and comprehension scores. The class is one gentle curve--some a bit below average but more than half well established as strong readers. Only one is the far outlier, far behind the others. 

She's a pretty girl with striking eyes. She stands in the middle of the class with their proud reading ribbons. But she cannot read much. She may never get beyond that stuttering, gasping pace. 

Only the mother knows which child the outlier is, silent in the crowd of parents. Most are quietly relieved. It is not their child left behind. Some are vocally disappointed, their children below the average line. They promise extra rigor at home. They are troubled and motivated to work harder. No one wants to think about the outlier. 

What goes through this mother's mind?

Grief.

I looked forward to showing her the wonders of facts, history and geography. She has no interest and cannot grasp even the beginnings. I dreamed that we would do art projects together. She grabs the supplies and smears them in a random mess, shouting, “Look! Isn’t it great? Clap for me!”

The dreams are gone. The chipper, inspirational quotes about overcoming disability are lies told to absolve the rest of the world of the need to feel compassion.

Despair.

I love to read stories to my children. She doesn’t want stories. She doesn’t understand and has no interest in anything with depth. I can’t read to my son because she is screaming and destroying the house. My son isn’t disabled and yet his bedtime stories are curtailed.

Aching boredom.

Endless days of baby talk and the toddler in a child’s body that changes far too slowly if at all. Teaching the same simple things over and over day after day for years and years and years--knowing it is futile and that very little you do will ever make any difference.

Heavy exhaustion.

Serving and supporting her incessant, second-by-second needs means both parents are in deteriorating health and the second child, who is six, is mostly on his own. He has to be better than other kids, take care of himself, do with far less attention and grow up fast.

Utter isolation.

I’m supposed to be positive and “inspirational” as a parent of a child with this kind of disability. I will only be judged. No one has any interest in the reality.

I will never be one of those parents with older kids who can get back to their own life. I will never have time for myself again.

Fear.

“Dysmaturity” will mean she will never grow up but she isn’t disabled enough to be recognized as developmentally disabled and so protected as an adult. Extreme impulsivity will make her very vulnerable and a target for every scammer and abuser. She will be in debt. She may well be homeless unless she lives with me. She has no mental ability to plan even the most simple steps. She will never be able to plan how to prepare for school or get transportation to a job or cook a meal with more than one step.

The chaos of our daily life is not “a phase.” It is the way it will always be. It is unbearable and it will never stop.

Terror.

I know the fashionable thinking in the circles of disability rights is that disabilities, particularly neurological disabilities, should not be considered negative. They just exist, neither good nor bad. In a better world, we would all be "normal,"despite our differences.

Chickadee is a girl. She is not bad. She is not to be pitied. It is not her fault or a shameful thing.

But this is a disability. She cannot do all things. Without the blocks and missed neuro-pathways, she would have many more choices in her life. She may well have plenty of joy, if she is well sheltered by a family that designs an insular world to fit her needs. But let's face it, she will not have the choices others have.

Let us be honest about this. When a parent learns that a child has such curtailed choices a dream dies.

Fifty years from now: Standing Rock in historical context

In fifty years, what will they think of 2017? With all our frantic concerns about the state of our country and the world, what will be considered most crucial to history?

Certainly there will be a mention of President Donald J. Trump’s stormy first few weeks in office. But in a world fifty years from now, whether fossil-fuel-driven climate change is in full swing or it has been averted at the last minute, a far more important historical drama than the Trump presidency will dominate the histories. 

Creative Commons image by Dark Sevier of Flickr.com

And it will center on North Dakota. Until now it was hard to imagine a place more remote from the center of power and history. But in the past six months, something happened there that will mark history one way or another. I don’t mean "merely" the gathering and unity of the Native American tribes at Standing Rock to protest the Dakota Access Pipeline. 

That is significant and surely will be mentioned. But more important still was the unprecedented feat of indigenous and grassroots activists who defeated (even if only for a time) the Goliath of the fossil fuel industry, culminating in the decision by the Obama administration to deny permits for the pipeline last December. 

US military analysts have joined the vast majority of scientists in stating that human-induced climate change is a greater security threat to our country than terrorism. And whether we counter it or let it overwhelm us, the stand off in North Dakota will be a key moment. It may the beginning of the last-minute sea change toward a sane and sustainable future or it may mark one of the last stands of that sanity in a world quickly descending into the chaos of massive drought, famine and huge migrations of refugees. 

Last week, militarized police evicted protesters from the Standing Rock camps protesting DAPL. Dozens of officers in riot gear descended on the camps with weapons drawn and helicopters in the sky, pointing guns at people at prayer and arresting forty-seven. 

Right now the political climate is such that the event was primarily reported by foreign newspapers such as The Guardian in the UK and most US media were silent. But history will have harsher words for this reactionary act of corporate government. 

This may well be one of those times our grandchildren will ask us about someday. Where were you and what did you do? Did you wring your hands or were you one of those who had the courage to stand up for our lives? 

Creative Commons image by Dark Sevier of Flickr.com

Most of us feel helpless to stop such disastrous events, but even in the most difficult circumstances there are things we can do. They may not stop the injustice and destruction, but they will be an answer--of sorts--to those questions. We can attend protests, write letters, organize, speak out constantly about climate change even amid momentary concerns and call our political representatives.

We can demand that public officials step in or at least speak out with the enhanced voice of their offices. And this does not mean only Republican officials who may have backed the demolition of the protest camps. In many ways, it may be more important to call the Democrats. 

Even if they are too few to stop what is happening here and now, they can speak and work toward solutions to the crisis of climate and fossil fuel. 

And the message for them is essentially the same as the message for us. Another era will come and they will look back on the treatment of these Native American activists fighting for all of our futures today much the way we now look on the beating of civil rights protesters in the 1950s. 

Every public official today will be historically defined by where they stood on this issue. 
 

Surviving Trumpland: Is it possible to be a realist and idealist?

In October 2015, my husband and I were sitting in front of one of the first fires of the season after the kids were in bed--the fir logs snapping and popping behind smoky glass.

"So, this guy Donald Trump sounds like trouble," my Czech husband said as he leaned over to show me an article with some of Trump's first stats on popular support and media influence.

Creative Commons image by futureatlas.com

My heart lurched when I saw the evidence, my hands and feet going cold. 

I've never been considered a political analyst, but I saw it all clearly in that moment--the combination of rhetoric, some devoted media and the fomenting stew of rural and suburban American frustration and resentment. It all slid into place like puzzle pieces in my mind.

I shook my head. Trying to deny it. 

"He'll win," my husband--who spent all of eight months in a conservative American backwater fifteen years previously--stated with certainty. "He's going to win, isn't he?" 

"I hope not," I said. "But he's the most likely to win."

Now a month after the inauguration the only thing that is really astounding to me is that most white liberals in America are declaring how stunned they are and going around asking, "How did this happen?" 

My husband and I are really not that sophisticated in our fireside political analysis, but I do listen to the waves of noise and emotion that large masses of people emit. I never considered any other Republican primary candidate a serious contender. And knowing how the American campaign finance system, two-party state, electoral college, corporate governance, military, media and everything else works, it looked nearly inevitable that Donald Trump would win the general election as well.

Sure, in the final days before the election, I hoped the party elites had acquired cold feet and decided to back Clinton more vigorously. But it was fleeting and the cold dread that settled deeper into my stomach as the results came in elicited no tears or shrieks, despite the fact that I saw Donald Trump as a dangerous presence as early as 1994, when I was a freshman in college.

I remember being struck by his aura of threat, hate and sleaze even as a young, politically inexperienced adult. 

"You were never as idealistic as the rest of us," my mom says of my dire warnings about Donald Trump a year ago. 

Hey! Wait just one blessed minute!

Is this more of that theory claiming idealists can't be realistic in their assessment of a threat?

I have always been told that I am the one who is too idealistic. My lifetime of activism has centered around demanding the protection of the earth and the rights to health care and equal opportunity for everyone. Basic idealism stuff.

And given what is happening now, I certainly hope people don't decide to throw out idealism in favor of some sort of apathetic "realism" that implies acceptance of the worst sides of humanity as supreme.

The fact is that a realistic view of the world and idealism in action are not mutually exclusive at all. 

Solidarity with Standing Rock - Creative Commons image by Jeffrey Putney 

Just consider this. Is it more idealistic to become bitter when reality comes down hard or to face the worst realities and refuse to give up a belief in ethics?

It is important to recognize and foster idealism--that passionate belief that we can and should do better in our society.

What I fear most is what will happen when all of those who now protest get outrage fatigue and go back to business as usual in the "new normal" that includes rampant public racism, denial of climate change, corporate whims as law and white, Christian, cookie-cutter America "first." 

Because believe me, that's where we're headed if we lose the "idealism" of the current movement. People can get used to anything and the most terrible state of affairs can come to seem "normal." 

I would argue that true idealism is clear-eyed and real. Look at the situation for what it is. Call out injustice in all forms, the great and the small. Demand justice. And go on demanding it, so that your grandchildren can still go on demanding it. That's the idealist goal. Nothing so unrealistic.

Realistic idealists don't secretly harbor the hope of a perfect, "ideal" world emerging. You don't have to buy into faith in the "steady progress" of humanity toward peace, equality and freedom. You don't even have to believe that your one life will do any lasting good..

No, idealism is only persistence. You keep protesting injustice and demanding justice, peace and equality, no matter the odds, no matter how long and no matter the response, because if you don't, the situation would be that much worse and the silence would be that much deeper. The act of protest--the lack of silence over injustice--is often the actual goal.

Now we all know it is going to be a long hard road for as long as Donald Trump is president of the United States. It has only been a month and we already feel shell-shocked. If it is naivete that got us into this mess, let's turn it  into a realistic idealism that persists.

Do not accept the "new normal." Do not go back to your kitchen sinks and cubicle jobs. At least don't go quietly. 

Be a realist because you see what is happening and be an idealist because you don't let it break you.