struggles

The snow hadn't yet begun to fall when I heard my son cry out at nine last night. I only half expected the seizure's arrival, this one in the wake of the full moon and a decent eleven days since his last grand mal. As usual, I crawled in bed next to him to make sure he kept breathing—the twenty minutes or so after a grand mal being the most risky to succumb to SUDEP (Sudden Unexpected Death in Epilepsy.) Just as I was falling asleep, Calvin clocked me in the face with his fist while he was shifting. I decided it was a good time to go sleep in the bed with Michael. Sadly, the extra THCA oil I'd given Calvin after the first seizure did not thwart the arrival of a second grand mal at 4:45 a.m. Perhaps it would have worked if I'd waited until midnight to administer it, but I was so goddamn tired I just couldn't.

By six the snow was coming down in gnat-like flakes, some of them floating upwards and crosswise as they neared the window. Like most everything in these coronavirus days, snow in May, even in Maine, is strange. Watching it come down, head on my pillow, I imagined it as some magical dust, some cooling off of the white-hot suffering, despair, frustration and anger many people are feeling during these essential shutdowns.

Slowly, I rose to see the garden, worrying that the young peony shoots might have been burned by the night's frost. Since yesterday, many blossoms have opened on the pink and purple small-leafed rhododendrons, a white one having already beat them to it. The garden is gradually coming into it's glory, even as deciduous trees are still mostly naked, save some tiny leaf buds emerging.

As if winter, today has been spent indoors trying my best to help my suffering kid feel better. He's not back to baseline, is more restless than usual, has clammy hands, stinky breath, foamy drool and no appetite to speak of. I'm tired and achy, and the sore throat I developed the other day is only slightly better. Still, looking out over the garden, the snow having finally given up without sticking, I'm feeling grateful. I have a house chock-full of windows, a gorgeous garden to devour and in which to wander, a sweet and loving husband who does all of the cooking, friends who leave delicious care packages on our porch, good books and films to lose myself in, and the privilege of not being a frontline healthcare or other essential worker during this pandemic.

But despite all there is to be grateful for, I'm still nervous about what is going on in this country, and ashamed of some Americans' behavior. It vexes me to hear that grocery store employees are being harassed by customers who do not want to follow state guidelines for wearing masks in public. I'm incensed at the ongoing lies, backpedaling, blame-shifting, cronyism and hypocrisy coming from the White House. I'm sickened by the news of hate crimes—so many still going unpunished—of innocent Black and Brown people who, amid their ongoing oppression, are disproportionately affected by this pandemic.

Outside, it's still below forty, though with winds at eighteen miles per hour it feels like the Arctic. But I'm sitting here at my desk with a view of the garden. Michael is home taking care of Calvin, who is doing slightly better and will be heading upstairs to bed fairly soon. I've just lit a fire in the wood stove and poured Michael and I a couple of early cocktails. Later, we'll warm up some ridiculously delicious chicken enchiladas with spicy salsa verde, and discuss the messed-up state of the nation. Then, we'll muse on gratitude, and I'll go to bed early and tired, though hopefully not pitying the situation with our own messed-up kid, but rather sympathetic for those out there in the world who are truly struggling.

the terror of decent people

The wind through the trees speaks to me, each leaf part of a collective voice, each a palm, each a map of sorts to a larger world. These living beings know what to do, know what freedom means. Seeds travel on breezes and in the mouths and bellies of birds. Trees put roots down in fertile soil. Geese and butterflies migrate legions of miles. Seas intermingle. Grasses cross natural, manufactured and imagined divides. Rivers breach levies. Clouds rain down quenching all creatures. Nature knows no boundaries. Why should we?

After Calvin's unexpected grand mal at dinner time Saturday night, after we wiped a stream of blood running down out of his mouth, I sat on a stool next to his bed and watched him breathe. I pondering the state of the nation we're in, where blood is shed in massacres which are happening with increasing frequency. Studying my boy's maturing face, I recalled what Frank Borman, Apollo 8 astronaut, said when feasting his eyes on blue Mother Earth from space:

When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

And then, while bitterly lamenting racist despots and White supremacists and the atrocities they commit, I reflected on what the seventeenth-century Dutch physicist, mathematician and astronomer said:

How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698

And yet, on this small spot of glorious planet we share with nature and the rest of humanity, we have an epidemic of Right Wing, White Supremacist terrorism. It's motivated by the erroneous, bigoted and dangerous notion that ours is a White, Christian nation, and inspired by a reckless president bent on maligning People of Color meant  to rile up his base, pitching one struggling human against another while he tweets indignities from his gilded toilet seat.

I think of how these hateful people speak of and treat others who are their mirror image, save what's in their hearts and the pigment in their skin. I hear and read deplorable rhetoric about refugees spewing from fanatical mouths, words like "alien," "animal," "thug," "infestation"—no way to describe decent, loving, striving human beings. Where has our collective humanity gone? It is being poisoned by a fearmonging "leader," a tyrant, liar and thief who preys upon the ignorance and anxiety of people who feel they need someone else to blame.

How foolish to believe that anyone on this hunk of land, one which was stolen from its natives in a heinous genocide, can somehow feel entitled to decide who has the right to call it home.

Yesterday, I watched a video of a Black American with long dreadlocks being harassed by a White police officer in the front yard of his own home. It was a case of mistaken identity. Watching and listening, I heard the anger in the man's voice and the fear in his wife's. History has proven that any false move by the Black man could've resulted in the cop gunning him down. I've seen so many of these kinds of videos I've lost count—White cops shooting decent Black people. White cops and civilians harassing Black men in cars. Black men on sidewalks. Black men picking up garbage outside of their apartment building. Black boys playing in parks. Black men, women and children going to church, having a bbq, entering their own homes, walking across their college campus, sleeping in their dorm’s common room, waiting for a subway, mowing their lawn, entering their apartment building, going home from a pool party, driving to work, crossing a street, waiting for a friend in a Starbuck’s, shopping at Walmart, walking home.

And if you haven't read or seen James Baldwin's, If Beale Street Could Talk, you should; in its words and scenes, you will feel the terror of decent Back people.

These White Nationalist racists have launched an assault on the rest of America, on decent people's freedom to move and to safely exist in our personal and public spaces. They are driven by the fear of being replaced by people who've born the brunt of centuries of White state-sanctioned slavery, family separation, rape, forced labor, harassment, racial profiling, police violence, arrest, incarceration, exploitation, discrimination, marginalization, segregation, disenfranchisement, and demonization.

But as sure as the trees speak to me through the whisper of wind, as sure as the tides flow and recede, the world is evolving, its natural and imagined borders forever changing. Its people put down roots where the ground is most forgiving. We cross divides in search of liberty. We intermingle like the seas. We suffer and triumph and love and bleed the same. Each of us is a leaf on the same tree. We have room enough to shelter one another, and to let each other breathe.

Carolyn Cole / Los Angeles Times

never look away

Seeing the young woman forcibly whisked away by strangers, her family standing there motionless, paralyzed by fear, gave me chills. Though they were simply actors in a movie, it stirred something in me.

The film, Never Look Away, begins with the systematic kidnapping, sterilization and extermination of Nazi Germany's "undesirables"—the infirm, the mentally ill, the disabled—children and adults like my son Calvin whose life, as my friend Chris Gabbard describes in an article and in his recent memoir, is valuable beyond reason. In Hitler's regime, children like Calvin were guinea pigs, tortured in medical experiments and murdered in a state-sponsored effort to "cleanse" society of what Nazis deemed as stains on the Aryan race. Then the Nazis went after the Jews, likening them to thieves, rats and demons, instilling fear and hate in order to further their cause, which was to eradicate them.

These images are sickeningly reminiscent of what I see happening today. Refugees from war-torn, poverty-stricken, violent and corrupt nations are being portrayed by this administration as murders, rapists, snakes, infestations. Like animals, they are being crammed by the hundreds into spartan cages where their health and well-being are in jeopardy—little water, little food, no privacy, no basic hygiene. Their children are being forcibly separated from them. These refugees—our fellow human beings—are no different than most of us, except that they are desperate; they are good people, love their children, want a better life. We are not better than they. We can't lay claim to this chunk of earth stolen from its natives. We can't exploit their labor while neglecting their fundamental human needs.

Though I'm no Christian, I find myself asking, what would Jesus do?

Some people ask why we should be caring for refugees when we should be caring for "our own." Why does it have to be a choice? Can't we do both? I don't know how to solve this humanitarian crisis, though I have some ideas. But one thing for sure is that the current treatment of innocents is barbaric.

The other day someone characterized me as "pro-abortion." I corrected her by explaining I am pro-choice, then underscored the difference. I went on to point out, at least in my mind, the hypocrisies of many so-called pro-lifers—people who support capital punishment (state-sanctioned murder), and yet oppose food stamps, universal healthcare, same-sex adoption, basic care for refugees, a living wage and other measures that help vulnerable populations live and thrive and that contribute to a healthy society.

I think back on the film and on the Nazi regime it depicted, one in which its fascist leaders deemed some lives (Caucasian, Reich Church Protestants, healthy, cisgender) more deserving than others (Jewish, Romani, non-Europeans, the infirm, the disabled, Leftists, homosexuals, POWs, Catholics and followers of other religions.) I think about a world in which people, thanks to ignorance and propaganda, fear and hate others. I think about nations like ours whose so-called leader ridicules people like my disabled son, denigrates women, and maligns decent people who are Black and Brown and Gay and Bi and Trans and Jew and atheist and foreigner.

I think again about the atrocious conditions these refugees face in what epitomize modern-day concentration camps. I think about how so many Americans choose to avert their eyes. I consider the Canadian cartoonist who was fired for his depiction of a golfing POTUS playing through drowned refugees, Oscar Martinez Ramirez and his two-year-old daughter, Valeria. I am reminded that I must remain vigilant in protesting such inhumanity. I am reminded that silence equals complicity. I am reminded, when it comes to atrocities, we must never look away.

Photo AFP-JIJI

silent and indifferent

Slowly, she walks by my side under a tar-black sky, her blond paws darkening with dew. It’s the biggest patch of universe I can view around these parts, skirted with white pines, maples and oaks all of a similar height. As I look up into the center of the sprinkling of stars, a swath of clouds is disguised as the Milky Way. Near the northwest horizon I spot the Big Dipper, and above me is Cassiopeia, but I cannot find Orion, and I am at first vexed, then disheartened. For years now, in my fantasy, I've imagined Orion as Calvin's guard, rising over our house on clear winter nights, though I know there’s no such thing as a divine protector. I know because all I have to do is read the news about weary immigrants risking their lives on perilous journeys to escape murder, war and genocide, or see the countess homeless folks shuddering alone in the cold, or hear about the innocents riddled with bullets in churches and theaters, cafes and other public spaces in the name of hate or some so-called supreme race, false ideology or distorted god. I know because today I am reminded of the Sandy Hook elementary school first graders gunned down by a disturbed young man who was once a child himself. I know because of the millions of abused, exploited, interned, starving, neglected, diseased, disabled, chronically ill children in this world—even children like Calvin who are racked with seizures, some so severely that they don’t survive. Still, there are those who salt others' wounds swearing it’s all part of God's design.

In the center of this vast grassy stadium, a ring of trees looking on, I can see our breaths as mist begins to hug the earth in pockets at the field's rim. I want to venture to its center where by day the college athletes lope in ways Calvin will never do, out away from the glare of spotlights and the hum of engines. But harsh light grazes me no matter how far I go. From beyond the field's edges I can hear the traffic drone, but then I hear the night train whistling its orchestra of perfectly arranged notes, and I think how artful the conductor must be, how he or she finesses the whistle into a crescendo like I’ve never heard before, and I am grateful for so many things: for my husband, for my son, for my place in this spinning blue world.

Still, I want the sky to be blacker, the stars brighter and more evident. Looking up to see the mass of them knowing, though not fully grasping, their infiniteness, I feel insignificant, and I think about other beings on other planets doing the same, as if looking through a window or perhaps into a mirror. Then I consider those who believe life exists only on Earth, and I muse over such conceit.

Then, as I stand scratching Nellie’s head, I wonder if on those billions of other planets little innocent beings are suffering, ill, abandoned, slaughtered, and I loathe the thought because it’s clear to me that the universe, though long ago set in sublime motion, remains silent and indifferent to our pleas. The only elixir is to think of each star as one of those little children, to think of the shining moon as their vessel of love pouring over us as if to say, please, end your hateful ways.

originally published 12.14.15

photo by http://favim.com

trolls

The photograph featured a young white male with a shaved head, multiple piercings, twice-gauged ears, nostrils gauged larger than quarters, what looked like a gauged chin (how is that even possible?) and multiple tattoos adorning his face and neck.

“Describe him in one word,” the post read. Over twelve-hundred people responded to the troll's provocative post. These were some of their comments:

why?
awful
moron
wtf?
devil
yuk
jobless
gross
ugly
nuts
brain dead
dumbass
idiot
nasty
twat
circus freak
joke
dick

All but a few of the comments were disparaging and frankly made me sick. While I am not a fan of wild piercing and gauging body parts, I thought about my unusual twelve-year-old son Calvin who is non-verbal and somewhere on the autism spectrum, wears thick glasses, is still in diapers, walks awkwardly, makes odd noises, and drools, so I added my one-word comment to the list of deplorable ones: human. This boy with the tricked-up face, while he might in many ways seem other, is human and, thus, there is a decent chance that he is good.

The post arrived on the heels of an ACLU story about a Phoenix teacher, Ms. Myles, who emotionally abused and bullied one of her sixth graders, a Muslim immigrant from Somalia living here on a refugee visa. The story read:

Ms. Myles continued to give other students in class "downtime" to talk with each other, but would prohibit A.A. from talking during these times, often telling him to "shut up." Then, A.A. raised his hand in class to answer various questions but, as usual, was ignored by Ms. Myles. As he raised his hand again, Ms. Myles snapped at him, in front of the entire class, "All you Muslims think you are so smart." She then started ranting about Donald Trump, telling A.A., in front of the entire class, "I can't wait until Trump is elected. He's going to deport all you Muslims. Muslims shouldn't be given visas. They'll probably take away your visa and deport you. You're going to be the next terrorist, I bet."

My response was a mix of anger and despair. I read later that the child's classmates mimicked the teacher's anti-Muslim harassment.

Soon after, I read an article about a African American church in Mississippi that was torched and menacingly defaced with the words, Vote Trump.

During this year's presidential campaign, I’ve heard folks who criticize Islam for its treatment of women turn around and call women bitches, and worse, then tacitly endorse or shrug off Trump's admission of sexual assault and his ongoing loathsome behavior towards women. I've seen White high school athletes rally against their non-White opponents using racial slurs and hurtful posters. I've seen Trump supporters punch, spit on, shove and berate people of color, telling them to go back to where they came from. I've seen Hillary Clinton, President Obama and Black Americans hung from nooses in effigy.

Someone coined a name for these atrocious behaviors: The Trump Effect. I don't think these vile sentiments and actions are anything new, instead perhaps more of a throwback to a time when America wasn't so great, to a time before we'd evolved into a more perfect union (though we are far from perfect). Trump's caustic rhetoric has helped peel back a thin veneer, exposing the bigotry that still exists in the hearts and minds of some folks in this nation. He fans the flames of hate with his brazen contempt of other, his sanction of violence against the opposition, his broad assertions that certain immigrant groups are to be feared. Like Ms. Myles the sixth grade teacher, the ignorant are aping Trump's behavior.

Yet, for all his bluster, his promises ring hollow. He'll never deliver, even if he makes it to the Oval Office. He'll continue on as the self-serving, petulant, attention-starved child he is while letting the little guys flounder. He has excelled only in showing us exactly who he is: an arrogant, bullying, greedy, chauvinist who sexually assaults and verbally assails women, discriminates against Blacks, maligns Muslims and Mexicans, scorns war heroes and mocks people who are like my precious boy Calvin.

Yep, the tax-dodging loser with the bad comb-over is nothing more than your average troll.

Trump Effect: Inside the burned-out, vandalized African American church, Photo by Rogelio V. Solis/AP

on being pc

I'd wager some of you would have no problem calling my son Calvin a retard and, when I bristle, you’d tell me that I simply need to have a thicker skin.

That was my reply to a handful of folks who were grousing in a recent social media thread, as if aping the orange peroxide demagogue, Trump, about society being too politically correct.

One commenter, an elderly white woman, implied that I need to buck up as she has done in response to her cruel world. In pondering the unjust things that might have been slung her way, I imagined slurs and slights she has probably endured just for being a woman. Nevertheless, it appears she believes it is more commendable to tolerate offenses than lobby against them.

The thread had begun with a shared link to an online article describing the possible impeachment of two individuals in the student government of our local college over a recent fiesta, as it was described, one in which the mostly white partygoers had drunk tequila and had donned sombreros and fake mustaches in Mexican caricature. It was the third such affair involving the appropriation and misuse of the cultural identity of people of color and, though I can't say if hurt was intended, and while I have a morsel of doubt that it was, the truth is that some students felt offended, and this I lamented. The other commenters showed bitter contempt that political correctness had been taken too far.

Recently, I heard Trump regretting the fact that "nobody wants to hurt each other anymore." He waxed lyrical about the good old days of being able to rough up protesters, and whined about a nation that has become too PC. In my mind, political correctness is synonymous with politeness, courteousness and compassion. I mean, what is the downside of being thoughtful, respectful, sensitive and kind to others whose reality we can't truly know? Some might say taking political correctness to the extreme impinges on free speech. When it comes to inciting hatred toward certain marginalized groups—women, minorities, refugees, immigrants, the disabled—I disagree.

I noted in the thread that I’ve heard only white people complain about political correctness, citing that as evidence of white privilege, particularly of the straight male type: those in our nation who are most immune to bigotry, discrimination, oppression, prejudice and intolerance.

When one of the thread's white male commenters balked at the idea of white privilege, saying it was a load of crap, insisting that there is only one race, blaming people like me for separating the human race into categories of skin color, sexuality, sex, eye color, etc., and finally, following with the flabby platitude that all lives matter, I responded:

if there were truth to your assertion that there is only one race, how can you explain slavery and lynching and segregation? ... how do you explain the internment of innocent japanese americans? i understand the desire to live together in harmony as one race. i am all for it. but i cannot go so far as to deny that some people have it far worse than others in this world based on their race, and we cannot begin to solve those inequities until we acknowledge them rather than denying their existence.

At that point the man bowed out, saying he had better things to do like put on his sombrero.

The elderly white woman chimed in after having said that some people choose to live in racism, whatever that means. She typed:

God has made each of us different and given us each a row to hoe.

Rather than fighting a losing battle against what I saw as willful ignorance (one can only hope to change minds that are open and malleable), and though I understood her comment was not intended to refer to Calvin, I reasoned he could not be set apart, and thus I wrote:

i do not for one second believe in a god who would make calvin to suffer like he does ... if there is such a god, "He" is not merciful.

And while the conversation seemed to have been lost on deaf ears, it still feels right and fine to be a part of the greater good of us who value respect, consideration and kindness above childish impulses to express hatred, fear and contempt for that which we don't care to embrace or understand.

remembering the holocaust

"A nation's greatness is measured by how it treats its weakest members."

—Mahatma Gandhi

Today is International Holocaust Remembrance Day, in observance of the genocide of an estimated six million Jewish people, two million Gypsies, plus 250,000 mentally and physically disabled people, including those with epilepsy, and nine thousand homosexual men by the Nazi regime and its collaborators.

The regime’s first victims, as early as 1939, were adults and children like my son Calvin, who were deemed as “useless lives” because of their physical and intellectual disabilities, and whose gruesome executions were meant to improve the economy and cleanse the Aryan race. The code name for the euthanasia law was "Operation T4." In the years that followed, millions of others met the same fate in Nazi gas chambers and suffered torturous medical experiments meant to discover how best to extinguish a soul.

I’d like to think that Western societies have learned from this atrocity and thus divorced themselves from these kinds of fascist beliefs. Regrettably, I know that is not true. I know because today I see fear, hatred and contempt for others seething in the hearts of some we know. I know because people like Donald Trump spout that Mexicans are murderers and rapists, and calls for the rounding up of Muslims, and mocks disabled people, and openly expresses his disgust for women. I know because wicked white supremacy is alive and well. I know because I see six white high school girls smugly spell out the N-word, each letter shaped with gold tape on their black t-shirts, substituting asterisks for Gs; they photograph it for the world to see. I know because I hear so many people who blame immigrants and poor people and minorities for society’s ills, want to round them up, drive them away, shut them out, knock them down. I know because people still stomp on the homeless and beleaguered rather than lending them a hand, a shoulder, an ear.

In remembering the Holocaust today—the nadir of recent times—I tightly embrace and revere the diversity in this nation and, most of all Calvin who, unlike anyone I know, is as pure and sparkling an example of what I find best in humanity: the ability to love, accept and embrace everyone, no matter who they are, what they look like, or where they're from.

From 1941 people with physical and mental disabilities were killed at a psychiatric hospital in Hadamar in Hesse [one of six similar locations]. Declared "undesirables" by the Nazis, some 15,000 people were murdered here by asphyxiation with carbon monoxide or by being injected with lethal drug overdoses. Today Hadamar is a memorial to those victims.

silent and indifferent

Slowly, she walks by my side under a tar-black sky, her blond paws darkening with dew. It’s the biggest patch of universe I can view around these parts, skirted with white pines, maples and oaks all of a similar height. As I look up into the center of the sprinkling of stars, a swath of clouds is disguised as the Milky Way. Near the northwest horizon I spot the Big Dipper, and above me is Cassiopeia, but I cannot find Orion, and I am at first vexed, then disheartened. For years now, in my fantasy, I've imagined Orion as Calvin's guard, rising over our house on clear winter nights, though I know there’s no such thing as a divine protector. I know because all I have to do is read the news about weary immigrants risking their lives on perilous journeys to escape murder, war and genocide, or the countess homeless folks shuddering alone in the cold, or the innocents riddled with bullets in churches and theaters, cafes and other public spaces in the name of hate or some so-called supreme race, false ideology or distorted God. I know because today I am reminded of the Sandy Hook elementary school first graders gunned down by a disturbed young man who was once a child himself. I know because of the millions of abused, exploited, interned, starving, neglected, diseased, disabled, chronically ill children in this world—even children like Calvin who are racked with seizures, some so severely that they don’t survive. Still, there are those who salt others' wounds swearing it’s all part of God's design.

In the center of this vast grassy stadium, a ring of trees looking on, I can see our breaths as mist begins to hug the earth in pockets at the field's rim. I want to venture to its center where by day the college athletes lope in ways Calvin will never do, out away from the glare of spotlights and the hum of engines. But the harsh light grazes me no matter how far I go. From beyond the field's edges I can hear the traffic drone, but then I catch the night train whistling its orchestra of perfectly arranged notes, and I think how artful the conductor must be, how he or she finesses the whistle into a crescendo like I’ve never heard before, and I am grateful for so many things: for my husband, for my son, for my place in this spinning blue world.

Still, I want the sky to be blacker, the stars brighter and more evident. Looking up to see the mass of them, knowing, though not fully grasping, their infiniteness, I feel insignificant, and I think about other beings on other planets doing the same, as if looking through a window or perhaps into a mirror. Then I consider those who believe life exists only on Earth, and I muse over such conceit.

Then, as I stand scratching Nellie’s head, I wonder if on those billions of other planets little innocent beings are suffering, ill, abandoned, killed, and I loathe the thought because it’s clear to me that the universe, though long ago set in sublime motion, remains silent and indifferent to our pleas. The only elixir is to think of each star as one of those little children, to think of the shining moon as their vessel of love pouring over us as if to say, please, end your hateful ways.

photo by http://favim.com

black sheep, scapegoats and wild white horses

I’d been hired for my talent and experience. Little did they know I was not the yes-man—the minion—they’d been counting on. Once through the doors, I politely challenged their practices, disputed their logic, questioned their command—what I’d thought I’d been hired to do. It was clear from the get-go, though, that I didn’t fit the mold. Clad in denim, wild vintage shirts, and rugged western boots, I struggled amidst a sea of pastel and khaki and modest coifs. I became the thorn in their side, perhaps even a reminder of their own resentments. I was the wiry black lamb in a herd of lily white sheep. They bullied me, shamed me, tried to back me into a corner and shut me up. But I called them out, then fingered a hole in their design and freed myself without turning back except to acknowledge to myself that I’d been right to question their methods and the unfairness of their systems. I was ten weeks pregnant with Calvin; He and I didn’t need the shit they’d been shoveling our way.



If Calvin, who is now eleven and significantly disabled, could speak, maybe he’d tell me similar stories about being pushed around at school. It can happen to kids who are different from the rest. I’d believe him. If he’d gotten hurt fighting back, I’d have understood. I can’t ever know, but I doubt I’d tell him to stand there with idle arms and absorb their bully tactics. If he’d felt justified, or even perhaps safer by fighting back, I’d get it. And I'd have his back.



If a friend called to tell me she’d been sexually harassed by a superior, I’d believe her. If she’d resisted and had lost her job as a result, I’d say she'd done the right thing. I wouldn’t ask what she was wearing or what she might’ve done to provoke the jerk. I wouldn’t have advised her to comply and consent just to save her job or to save her skin or to save her life.



I feel similarly about Sandra Bland, the black activist who was pulled over by a white cop in a Texas town for ostensibly not using her turn signal. When asked to put out her cigarette, she at first did not comply, calmly citing her right to smoke in her own car. After all, she’d only been pulled over for a minor traffic infraction. When the officer quickly became agitated with her calm and confident dissent, he asked her to exit her car and when she questioned his authority, he escalated, began yelling, then threatened her with a taser shouting, “I will light you up.” The incident deteriorated from there, the cop leading her out of the scope of his dash cam, threatening to arrest her and roughing her up. Though she insisted on knowing why she was being detained and handled in such a vile manner, he refused to tell her. All the while Ms. Bland fought against the injustice, believing her rights had been violated. After she’d been thrown down, had her arm wrenched and her head knocked into the ground, she was cuffed and arrested for resisting arrest (though for what?) then died days later in her jail cell at the end of a noose fashioned with a plastic trash bag.


I posted video of the confrontation on Facebook, citing racism as its source. The backlash I received in comments from white readers astounded me. I watched the video more than a half-dozen times in case I missed something. Each viewing reconfirmed my belief that the officer had erred, and badly. My observation was validated by Texas public safety officials, who removed the officer from his beat for having violated protocol. One commenter, a stranger to me, posted this:

Sorry but why can't people follow directions. Just asking.

She went on to say that Ms. Bland’s cigarette had been a possible weapon. Other commenters reasoned that Ms. Bland's rolling through a stop sign, failing to signal and questioning authority were somehow grounds for her baseless treatment by the officer. I encouraged them to imagine their daughters meeting the same demise. They used racially-charged terms like “thug” and flabby platitudes chastising Ms. Bland and others who came to her defense for, “playing the race card.”

A friend, saying my post and many of the comments were “just plain wrong,” also insisted that Ms. Bland’s behavior, though completely within her rights as a citizen and in direct response to the officer’s escalation and improper, abusive handling of her, was the cause for her demise. By saying so, he’d reduced Ms. Bland—like so many other white people have done to African Americans who’ve died unjustly in the hands of the police or other armed civilians—to a scapegoat.

Watch the video. Study it. Mark the moment when the tenor of the exchange becomes truly, unreasonably heated.

My friend went on to describe a time when he was nearly arrested for a felony crime he did not commit. He insisted that his cooperation with the officers was what had saved him, and that by the end of his ordeal, when the cops realized the accusations against him were false, the group of them were “standing around laughing and joking about how it all went down.” He would not concede the remotest possibility that, had he been black, things might have gone south fast. He failed to see that his whiteness, and the police’s trust of his whiteness against a backdrop of an armored white criminal justice system, perhaps had saved him from a worse outcome more so than his mere compliance. I’ve seen too many videos and read too many stories of unarmed black men, women and children being assaulted, beaten to a pulp, strangled and gunned down, and groups of peaceful protesters being doused with pepper spray and tear gas, to believe that blacks are treated the same as whites. The failure by some whites to recognize even a morsel of chance that racism is at the root of incidents like the one with Sandra Bland is a good example of how white privilege distorts reality.

Those who deny the existence of their white privilege, I believe, either do so consciously or perhaps because they are so steeped in its advantages, which pad every aspect of society, that they seem to find it an impossible notion to grasp and own, their families having benefited from its coddling for generations. So sheltered and buffered are they from any first-hand experience of centuries-long oppression, like that of Native and African Americans, of discrimination and racial hatred, that they can’t discern their privilege, as if trying to see white on white.

Unjust treatment of this kind I partly understand because I am a woman. In this predominantly patriarchal society, women are often victims of bias. We are catcalled and ridiculed, paid less and discounted, overlooked, condescended to, taken for granted, abused, and our bodies legislated by men. Societal cues tell us we are supposed to look a certain way, act a certain way and talk a certain way. We are often expected to be ladylike, made-up, shaved-down, in shape and dressed in heels. We are expected to sit with our knees together and yield to the man, the husband, even the colleague who is our peer. If we challenge authority we are labeled bitches or are told we must be, “on the rag.” If we prefer women, men boast that if we'd simply have sex with them we’d change our minds.

Think about it: if an entire race of people must create a movement called #Black Lives Matter, prompted by the gross injustice they face on a daily basis, not only by law enforcement, but in employment and housing and education and health care, we should know it to be true, besides the fact that there are numerous studies proving it. How many of us white folks have been strangled to death by cops for ostensibly selling loose cigarettes on the street? How many of us white folks have been charged more for rent or told the apartment is no longer available because of the color of our skin? How many of us white folks have grade school children who are in jail for minor misconduct? How many of us white folks get shot and killed for knocking on a white person's door for help? How many white kids get gunned down for playing with a toy gun or wearing a hoodie? How many of us white folks get arrested for trying to enter our own homes? How many of us white folks have brothers or fathers or sons or uncles in jail for decades for minor offenses? How many white Ivy League students are stopped and questioned simply for walking across their own campus?

Read some gross statistics about criminal "justice". This is not opinion. This is fact.



Some might say I am beating a dead horse by going on about racism and incidents like the one involving Sandra Bland. They’d be wrong. The horse is not dead. It is alive and kicking, wild and white and frothing at the mouth, bucking and prancing and hoofing black bystanders in the teeth. The wild white horse is racism. It must be corralled, harnessed and broken or it's going to wreak havoc with everyone and everything we all love and value. We can't keep saying the horse is tame when we see the wake of its disastrous path and the bodies it continues to bloody along the way.

And if all this talk of racism irks you, then perhaps you've got something to explore.

Sandra Bland, jailed for resisting arrest, but for what?

rise above

An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.

—Reverend Dr. Martin Luther King, Jr. 

Saturday, when pulling into my friend’s icy driveway, I saw a large cardboard sign propped in her car’s windshield with the neatly handwritten words, CHALLENGE RACISM. We were headed to the movies to watch The Imitation Game. It wouldn’t have been my choice of movies, but I wanted to spend the evening with Lauren who I hadn’t seen in far too long, so the choice of movie was of little import.

The film was just as I expected: a mediocre period piece based on the true story of a white man—albeit a gay one—written and directed by white men and with a predominantly white male cast. I watched the predictable story unfold, deeply aware that the movie Selma, about the Civil Rights Movement and which I’d preferred to have seen, had, for all intents and purposes, been snubbed by the Academy of Motion Pictures members—no great surprise considering the Academy is 92% white, mostly male, and the average age of its members is 62. Could it be worse than our present congress? I fear, yes.
 
On the drive home we talked about the sign in Lauren's windshield. She told me that every Friday evening she stands with a group of peace activists at the corner of Pleasant and Maine Streets brandishing various signs like the one in her window and others such as BLACK LIVES MATTER. Lauren, who is white, went on to say that often she gets honks and thumbs up from drivers, but that once she was flipped off and sometimes she is heckled. I told her that she should write the word RACIST on the backside of her signs so that she can flip them around in response to the haters' vitriol. But she said she’s usually too shocked to react and even then her impulse is to diffuse the situation peacefully. She's a better person than I.

Nearly forty-seven years ago Rev. Dr. Martin Luther King, Jr. was assassinated in Memphis at the age of thirty-nine. He was a champion of the African American Civil Rights Movement and the Peace movement and his aim was to achieve equality for his people who had been enslaved in this country for centuries and who continued to be literally and figuratively stomped on, pushed aside, held down, beaten up, burned out, fire hosed, strung up and thrown in jail by white people, most of them men. 

Now, in 2015, many things have shamefully gone unchanged. The racial caste system, which originated with slavery, evolved into segregationist Jim Crow law before morphing into the racist lies and ills of the War on Drugs, still exists. Black boys and girls are targeted, punished, suspended and expelled from school at alarming and disproportionate rates compared with whites, even as early as preschool. Black schoolboys and schoolgirls, who are seen as miscreants, are harshly punished, often ending up in juvenile detention centers while their white counterparts get slapped on the wrist. Black boys and men are wrongly stopped and frisked, pulled over, harassed, often falsely accused of petty crimes and/or resisting arrest. They are tasered, gunned down or choked to death by aggressive, racist white cops. The ones who survive are convicted, often falsely, incarcerated and sent to prison to serve ridiculous sentences including—again, at alarming rates—execution. Those who are released are legally discriminated against for the rest of their lives at almost every level of society: housing, education, health care, employment—even one of the only avenues they can take to change the very system that oppresses them: denial of the right to vote. Some, like the author of one of the books I’m reading with the selfsame title, call this systematic oppression The New Jim Crow.

Today, Martin Luther King Day, I think about the ongoing subjugation of black people. And, because of who I am, who I love and who I have become, I also think about the legions of others—disabled people, women, Muslims, gay people, transgender people, immigrants, Hispanics, poor people, Native Americans, homeless people, disabled people—who continue to be marginalized by a society governed predominantly by oligarchs and their greed, selfishness, intolerance, conceit, apathy, contempt, ignorance, self-righteousness, desire to exploit others and their lust for power. 

Then, I think about how much better we can do as a nation, as a people, to incite change. If only each and every one of us—millions—could rise above our individual concerns to see the plight of others, then go one step further and courageously, like Martin Luther King, Jr. and Lauren, choose to do something about it, if only through our words.

one world

Calvin's epilepsy—the suffering it causes, the challenges it creates, the sorrow it provokes—often gives me pause to consider bigger things, incites me to contemplate life and all of its complexities from different perspectives. Sometimes I peer from the inside looking out, at others I gaze from the outside looking in. And always, with regard to the world—the universe—I am forever humbled.

Alex Churney, A Milky Way Shadow at Loch Ard Gorge

How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698

Associated Press

When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

The world looks marvelous from up here, so peaceful, so wonderful and so fragile. Everybody, all of us down there, not only in Israel, have to keep it clean and good.

—Israeli Air Force Col. Ilan Ramon, 29 January 2003

scorn, swagger and the empathy gap

Recently, I stumbled across another in a string of hateful Facebook posts. To say it was snarky is an understatement. I grappled with how to comment, since I believe that anytime someone posts something to the site, in doing so we are inviting comments. This is what the post said:

If you can afford beer, cigarettes, new tattoos, drugs and cable TV ... then you don’t need food stamps or welfare. “Share“ this if you agree.

I considered posting my own snarky response to the heartless meme, including simply writing, “Gross.” Its callousness and the stereotypical image it conjured offended me. I felt both ashamed of and sorry for the post’s original author and its sharers, who perch themselves atop pedestals looking down on others. Have they any idea what it’s like to live in poverty? Though I felt a hankering, instead of inserting a public rant, I ended up Googling the meme and found several thoughtful commentaries on the subject that I recommend reading, one by a New York Times Op-Ed columnist, the link to which I copied and pasted into the comment box along with a second, thoughtful entry from another source.

Still, the post sent me reeling, summoning up other recent examples of bullying, bigotry and antipathy, in effect, an empathy gap, that keeps our nation from realizing its true potential, such as: the protests by some individuals and factions demanding that Central and South American refugees, many of them mothers and children trying to escape the dangers of drug cartels, simply “go back home”; last week’s 5-4 Supreme Court decision allowing certain corporations the right to refuse insurance coverage for birth control (one of the best methods to avoid unwanted pregnancies and abortions) for their female employees, ostensibly based on the proprietors’ religious beliefs; the persistent press by some diehards to ban same-sex marriage; the macho swagger of some deluded gun rights activists who wholly misinterpret the second amendment twisting it to conform to their paranoid notion of freedom and in doing so frighten and endanger innocent bystanders by gratuitously toting their phallic weapons into restaurants and stores.

Then, I considered the post again, pondering the contempt it imbued. The sick feeling it gave me reminded me of the time when my friend, her husband and I were driving through an East Bay, California neighborhood one hot summer day. From the driver’s seat, her husband made a vulgar remark about a small gathering of African American folks cooling off on a front stoop minding their own business. When I challenged his vile comment he fell silent. From the backseat I watched his neck turn red.

Mulling the Facebook post over in my mind further, I embarked on one of my silent stream of consciousness rants:

why do those who complain about people on welfare seem to ignore the billions in corporate subsidies, unfair tax breaks and loopholes that burden the struggling masses while profiting the wealthy few? why do some women still allow men to discriminate against them by sanctioning policies, by way of their vote, that govern our bodies and limit our advance in the workplace? why do some hold the poor in contempt? rhetorical: why do the owners of walmart, papa john’s, mcDonald’s, and the like, insist that raising the minimum wage will kill jobs, though evidence points to the contrary, just as their profits soar into the billions, their own salaries and bonuses reach millions, yet their employees don’t make enough to live on, in turn fostering their need for public assistance? why do people resent immigrants when this nation was built by immigrants and is stronger and richer in myriad ways because of its diversity? why do companies, even nonprofits like Goodwill whose CEOs make several hundreds of thousands per year, feel justified in paying their disabled employees mere pennies?

This afternoon I took Calvin down the street for a walk. He balked, didn’t want to go, twisted stubbornly in my grip to break free. But I insisted, even though he whined, and I kept encouraging him to forge ahead and go a little farther than he had the last time. Why? Because I want a better life for him, want him to realize his potential, and so I take the two of us out of our comfort zone to do so, and believe me, it’s not always fun. As we labored in the hot sun to the end of the block and back I was reminded of the immigrants’ perilous struggle to make a better life for themselves, of the grieving, bitter parents advocating for reasonable gun safety measures, of women standing up for their rights even as misogynists and reactionaries abuse and taunt us, bind, blame and curse us, of gay people advocating for the equality that is written plain as day in our constitution, of the poor, sometimes working two and three jobs while enduring the scorn of their fellow Americans in more ways than just nasty, contemptuous Facebook posts.

Ritchie Goins Jr. watches from the window of his parents' trailer as cinderblocks are brought in as the foundation for his grandmother's new trailer. Leetha Goins and her children Timmy, 25, Troy, 16, and grandson Will, for whom she cares, were displaced when a drunk driver swerved off the road and crashed into their trailer.  Photo, Matt Eich/Alexia Foundation

friday faves - humpty dumpty kid

Humpty Dumpty sat on a wall,

Humpty Dumpty had a great fall;

Threescore men and threescore more,

Cannot place Humpty Dumpty as he was before.

—English nursery rhyme

They keep coming, these seizures, reliably, awfully, no matter what we do to halt their progress, dampen them like hot embers being fed a dry breeze. They’re a squirrely moving target, at a thousand yards in high winds, a low sun—blood-red and blinding—nearly impossible to hit, no silver bullet to employ.

Every time Calvin has one (I fear he did again in the middle of the night last night—though I can't be completely sure—and it’s only day eight since his last one) I think of that eighties anti-drug television commercial with the sizzling egg in a hot pan, “This is your brain on drugs,” the voice-over says. I can only imagine that the unharnessed electrical activity ravaging Calvin’s brain must be frying it inside out, like a microwave or a white-hot poker jabbing, burning and scarring his delicate, developing tissue. Every seizure must be like a mini nuclear bomb, the millions of tiny molecules and cells in his young, growing brain—his brain that is trying so very hard to learn essential, foundational things—getting scrambled into some unrecognizable, unsolvable puzzle that can never be put back together again or made sense of. My poor little Humpty Dumpty kid.

The lessons, skills really, that Calvin is trying to learn just keep getting interrupted, like a parent trying to digest a newspaper article while every few minutes his kid, interrupting, yanks on his shirtsleeve to ask him a question, “Daddy, Daddy, Daddy.” The neuropathways, which my son is so lacking in, seem to get tangled in menacing knots so tightly the arteries are simply cut off, leaving a series of dead ends—roads that go nowhere—abandoned, left to crumble, decay and wash away with the next flash flood that occurs inside his precious skull.

I see that frying egg every time we increase Calvin’s anti-seizure drugs, too. On top of the debilitating, brain-rotting seizures go the spuriously innocuous anticonvulsant medications meant to stop the seizures by slowing brain waves. Slowing brain waves. That equals slower thinking, slower reaction time, slower development. At what point, since we keep having to increase Calvin’s seizure meds because there is no cure for epilepsy, will his development simply plateau? Will he be locked in at a one or two-year-old level for the rest of his life? Will he regress? Will he die from a seizure that just never stops like a runaway train that derails above some dark, craggy ravine, like poor Humpty Dumpty who fell off of a wall?

Not if we can find a cure. Give to cure epilepsy: http://www.calvinscure.com

Original version (amended for today) published September, 2011.

love and burden

Freud posits that any declaration of love masks some degree of odium, any hatred at least a trace of adoration. All that children can properly require of their parents is that they tolerate their own muddled spectrum—that they neither insist on the lie of perfect happiness nor lapse into the slipshod brutality of giving up. One mother who lost a child with a serious disability worried in a letter to me that if she felt relieved, her grief was not real. There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted—even in imagining another life.

—Andrew Solomon from Far From the Tree

photo by Michael Kolster

a better place

Last week I spoke to my therapist about some posts I'd seen on Facebook and of my subsequent negative reaction to them. The first was a photograph of a shirtless man—one I'd seen circulating before—taken from the back, his saggy jeans revealing plaid boxers. The caption said something like, did you know that sagging pants originated in jail as a sign to other inmates that they were "available" for sex? The man in the photo is black.

The other photo was of a terribly obese woman sitting on a park bench, her belly with its button sagging below the hem of her dress in what seemed obvious to me had been doctored in Photoshop. The comments to both photos turned my stomach with their biggoted, racist, small-minded and hateful ways.

I asked my therapist why (other than the fact that the first photo's supposition is totally false) their publication bothered me so much—so much that they made my heart race. We agreed one reason might be because I want to somehow make the world a better, kinder, more inclusive place.

Truly, I look around and see so much that is wrong with the world in which we live. I see vile racism seething out from under rocks or slapping me square across the face. I see a world where women are abused, insidiously and blatantly, at home, in society, in the workplace, in the military, and where misogyny and sexism wreaks from the pages of magazines, from tv serials, from movies, at the office and in schools. I see greed and corruption and selfishness and hoarding. I see those who mock people who have seizures. I see folks who claim to believe in the sanctity of life turn around and lobby for the death penalty. I see people of faith who scorn the less fortunate, despise, judge, limit freedoms and discriminate against others who are different from themselves. I see hateful images and messages like the ones on Facebook and wonder why people must be so destructive, wonder what their motivation is in spreading such toxic memos that often incite waves of loathsome, insensitive, smug comments. Then, I look deeply inside myself, sure to find regrettable thoughts and behaviors that I can work to improve.

Somewhat timidly, I commented on the photo of the obese woman in which the sharer had admitted vacillating on whether to post it. "When in doubt, don't," I wrote. To my delight, she "liked" my comment and, in doing so, I think she made the world a slightly better place.