meanwhile in america

a comfortable place. a window or deck with some kind of view. three bedrooms, two-and-a-half baths. healthy, well-fed children. no oppression due to race, religion, sexual preference or gender. a dog and a cat. reliable cars. gas in their tanks. a well-stocked fridge. a jam-packed pantry. a cupboard full of random booze. college degrees. no student debt. white-collar jobs. working from home. paid sick leave. vacation too. health insurance. childcare. broadband. cable t.v. laptops. iPads. cell phones. 401Ks. assets. equities. legacies. futures. write-offs. loopholes. quiet streets. decent schools. grocery stores galore. parks. camps. zoos. weekends away in nice hotel rooms. coats for every occasion. a dozen shoes. a household without chronic illness. neighbors with similar beliefs and views. pandora. amazon. netflix. hulu.

meanwhile in america.

three generations living under one roof. dissolving wallpaper. bed bugs. mildew. crummy plumbing. bad landlord. hungry tummies. refrigerator blues. bare cupboards. convenience-store food. thankless work if there's work at all. starvation wages. long days. no sick leave or paid vacation. no employee healthcare. soup kitchen queues. no childcare. cash-strapped. unpaid bills. no broadband. dilapidated schools. four people sleeping in one room. one coat for all weather. worn-out shoes. chronic illness in the family. acute, too. rationing medication. eviction looms. an innocent relative in prison. another deported. a loved one dying alone in the hospital from covid.

i hear on the radio a man named eric liu:

rugged individualism never got a barn raised, never got a field cleared, never got a schoolhouse built. the only good things that have happened have happened because people came together in a way where they took responsibility for each other.

a comfortable place: neglect in understanding—listening to, advocating for (in the streets and at the ballot booth), charity, bearing witness to and lessening—the suffering of others. complacency, selfishness, cynicism and ignorance can so obscure what's true.

Matt Eich/Alexia Foundation

ridicule

When I attended elementary school in the late sixties and early seventies, children like my son Calvin were sequestered to a separate cinder block building across the parking lot. They rode the short bus. The rest of us kids rarely caught sight of them. Some students called them all the names you'd imagine. Today, my son spends most of his time in his high school's Life Skills (special ed) classroom at the end of the hall. He is seen in the corridors and cafeteria, though is understood by few. In part because he is nonverbal, most of his typical peers and their teachers cannot grasp how complex of a child he is. In this busy world, perhaps they haven't the time or inclination for true understanding. I wonder sometimes what disparaging remarks some students have made behind his back. Though I imagine most of his classmates are kind, no doubt there are a few who whisper insults and slurs, mocking his disability like a certain crude official who somehow got elected.

In what seems like a lifetime ago, last Sunday I tuned into part of the Super Bowl, watching first to see if cameras would capture any Kansas City Chiefs fans mocking the Native Americans whom their team is so regrettably and ignorantly named for. It's astounding that Indigenous people's caricatures are still being used as mascots, their cultures grotesquely stereotyped and dishonored in manners resembling blackface, as if the pillage and pilfering of their villages and land, and the rape, kidnapping and slaughter of their people wasn't enough. And though Native people publicly take offense at these mascots, righteously expressing their disapproval, Whites dig in and stand their ground, insisting the opposite is true, clinging by threads to their disrespectful fetishes. Although I saw no cameras panning across White faces swathed in paint and feathers, when I heard the crowd parody a Native chant, I cringed.

At halftime, Jennifer Lopez and Shakira electrified the field, singing and dancing—indeed celebrating women—surrounded by an army of dark-haired sisters in regalia, their bodies gorgeous and prancing to Latin American rhythms. Clad in sexy sequins and leather getups, they sang in English and Spanish, embraced a feathery American and Puerto Rican flag, parading their talents, strength and stamina. An all-female string section worked their bows in unison. Smiling widely, I got teary seeing so many women own center stage and make such powerful political statements. They celebrated Goddess and matriarchy, Puerto Rican and other Latin Americans and their music, with nods to various cultures peppered into their mastery. 

In an instant, however, some folks denounced the show as disgusting, crude and unfit for their children. What I saw was altogether different, even as I watched it a second time. I saw formidable women take agency, women who no doubt had total autonomy over their production. I saw girls singing, "Let's get loud! Ain't nobody gotta tell you what you gotta do!" I saw gifted women kicking (and shaking) ass, as if to say "kiss mine!" to the intolerant officials who disparage Americans of Color, block the entry of Muslims and Africans, denigrate and separate refugees from their families, putting their children in cages. 

Those who scorned the female performers were likely the same ones watching a field full of mostly-Black athletes like gladiators bash each-other's heads in, risking traumatic brain and other injuries. Throngs of White onlookers—coaches, managers, fans—stood or sat in the safety of the sidelines, bleachers and VIP boxes, drinking beer, chewing gum, cursing and applauding each vicious sack. Boys and girls were also watching the carnage, same as they do in video games, television, and movies.

The condemnation of the female performers reminded me of contemptuous folks who quietly chastise overweight people for wearing bikinis at the beach or pool. I was reminded of the folks who champion dress codes for girls for the so-called sake of preserving boys' precious educations. I was reminded how women and girls are told, tacitly or not, to keep our knees together, to behave, to be ladylike, to smile, to consent, to be quiet, modest, obedient, sedate, yielding, abiding, pretty and chaste rather than fierce, assertive, outspoken, strong, dominant, irreverent. Lastly, I considered how it might please some people if they never had to see kids and adults like my son Calvin drool and limp and writhe in public.

I know what it is to be ridiculed and shamed. As a rowdy tomboy, I was told to wear dresses and skirts. I was scorned for my stringy hair and inflamed acne, even by adults. I've been shamed for how I've looked (too boyish or too sexy), how I've acted (too serious or oversensitive), the friends I've kept and keep, whom I've loved, how I've dressed, and what I eat for breakfast or lunch. I've no doubt but that if Calvin were slightly more able to be independent and mainstreamed, he'd be at times bullied, ridiculed, shunned and shamed for how he looks, and sounds and walks and eats. Likewise, I wonder if the Angolan and Congolese refugees at his school are subject to similar abuse and chastisement by a handful of the most ignorant students and adults.

My best guess is that we've all been mocked, shamed and ridiculed, and have likewise been guilty of committing similar offenses. I too often fail miserably. What are the drivers of these kinds of castigations? I wager fear, ignorance and conceit. My boy Calvin is incapable of feeling these. As such, though he's understood by few, and cannot read or write or feed himself or speak, he is quite the teacher, a rare and pure reminder of how it's best to be.

hard conversations

I sometimes speak with schoolboys and girls about my son. I tell them he is the best person I know. Not because he's my child. Not because he goes through hell and comes out the other side. But because he doesn't have a mean bone in his body. Calvin loves everyone no matter how fat or wrinkly or dark or skinny or disabled or poor or old or conservative or devout or liberal or ugly or American they are. He makes me want to be a better person every day, and yet I fail.

At a dinner party, I squabble about stories I feel are at best unconscious or implicit bias and at worst bigoted tropes being tossed around the table. Heart pounding, I struggle with whether to say something. Recklessly casting my doubts aside, I dive.

"Now might not be the best time to tell you I am Jewish and Black," I say, which everyone knows is false. I'm trying to make a point, condemn what I find offensive. Immediately, I regret my timing and reaction, my stinging words ruining what is meant to be a fun-filled evening and weekend.

I try to explain my perspective, recounting a time years back when I'd ignorantly used the term "White Trash," thus offending someone, not because she was poor—the comment was not meant to describe her—but because the term is an ugly slur for folks simply trying to eke out an existence. I hadn't before thought it offensive, but realizing with newly-opened eyes my affront, I apologized and have never again used the term. Then someone at our table defends the slur, perhaps to make me feel better, saying that anyone—White, Black or Brown—can be trash. I fiercely insist that human beings aren't trash, silently recalling the dehumanizing rhetoric of despots in describing good people as scum, rats, snakes, infestations. I think of the pathetic detention of refugees in our own nation. Tyrants and fascists seek to malign, blame, shun and eliminate those they deem unworthy. I think of Calvin. The conversation splinters.

I want to ask why being poor and underserved makes someone garbage. I wonder who in our circle, including ancestors, might have been considered as such, wonder how they were treated. I question if judgment is righteous when what it condemns sounds like bigotry. Rather, is the criticism of prejudice prejudice itself?

Still, I regret my initial timing and response, not because my reaction is at once deemed judgmental, but because I hurt someone I love very much. I did not consider fully the goodness of those I chastised. In doing so, did I aggrandize myself? I fear I was too hasty and harsh in my appraisal.

In a hurried moment after dinner I again attempt to address my reaction. First, I apologize for my folly. I want to describe White privilege to someone who has succeeded in the face of great adversity. I don't contest the hard work of anyone, their rising above neglect and conflict, their beating the odds, their ability to shine so brightly when so much of what they have come through and surrounds them is and has been hardship. These truths are evident. But they are not sole truths in existence. What I want is the time and space to say this:

If our names were Ashanti or Trayvon instead of names like Jennifer or John, we might not have gotten that prized interview, that job, that promotion, that apartment, that loan, that house in that nice neighborhood. We'd likely be making far less and paying far more than if our skin were whiter. Our net worth might be ten times less than those of our White contemporaries. If our boys were Black rather than White, depending upon where we live, they'd be three to six-plus times more likely to be pulled over, ticketed, fined, arrested, incarcerated, sentenced—perhaps even shot—for the same infraction as their White counterparts, or for having committed no infraction. If we were Black or Brown, we'd more likely live in food deserts, get subpar educations, drink tainted water, get inferior medical care and insurance, if any, receive less pain management, and be more likely to die in childbirth or languish behind bars. And if our Black children survived, they'd be far more likely to face punishment and detention for the same behaviors as fair-skinned students. If we were Black or Brown, we'd be far more likely to be the victims of predatory lending and voter suppression, far more likely to be thought suspicious, to be stalked in neighborhoods, to be convicted of crimes we didn't commit. It is truth that in this nation white skin affords a smoother, safer path through life and to prosperity than black and brown skin does, which is not the same thing as saying it is necessarily easy.

Later, someone uses the slur "dumpster divers" to describe homeless people, going on to say the majority of them choose to live on the streets and therefore don't deserve her charity. She says, essentially, that reverse racism is a thing. These notions are myths, easily disproved with the slightest scrutiny. For one, prejudice does not equal racism; racism is prejudice plus power (think 400 years of slavery followed by Jim Crow, segregation, state-sanctioned denial of civil rights, the War on Drugs, and current-day voter suppression and mass incarceration all backed by White authorities or, as a friend said, bigotry empowered by the system.) But I don't have a chance to debunk, which is frustrating and regrettable. I'm left wondering why the destitute so often garner contempt rather than compassion.

I go see Aaron Sorkin's adaptation of To Kill A Mockingbird. I know the story well. I watch the cast of characters—Whites, Blacks, fathers, lawyers, judges, motherless children, maids, innocent defendants, witnesses, poverty-stricken victims, abusers, Klansmen, heroes. Bob Ewell is a poor, White, drunken, racist, deceitful, bullying, abusive, widowed father of eight, and yet I wince when Atticus Finch says he's better than Ewell. I know what Atticus means. But contempt is no virtue, and so I find myself pitying the loathsome offender, but I physically ache for the innocent and doomed Tom Robinson and his family, who are Black, and therefore shackled in most every way imaginable.

I exit the theater making my way through crowded, misty streets thinking about the play and mulling over my earlier exchanges. These are hard conversations, requiring space and time and trust and openness and humility and listening. There are unknown truths we must all unearth, but best with love, respect, acceptance, tenderness, understanding and forgiveness. I close my eyes and think once more of Calvin.

Photo by Michael Kolster

here and there and in-between

Tommy Orange. That's the name of the young Indigenous American who authored the novel I'm reading called There, There. I'm only a couple of chapters in, but already I'm engrossed with his artful storytelling of people and place. A native of Oakland, California, where his story unfolds, Orange references a quote by Gertrude Stein in which, on a return trip to her beloved Oakland forty-five years after first having left it, she describes with painful childhood nostalgia that "there is no there there."

Stein lamented that Oakland was no longer a place where a child “could have all anybody could want of joyous sweating, of rain and wind, of hunting, of cows and dogs and horses, of chopping wood, of making hay, of dreaming, of lying in a hollow all warm with the sun shining while the wind was howling.”

In Stein's mind and in reality, the place had changed, as all things inevitably do. But my sense is that modern Oakland's inhabitants, like the ones in Tommy Orange's novel, believe there remains much "there," there, though perhaps of a different kind.

I was reminded of Stein's quote when I read a meme a friend of a friend had posted on social media. The manifesto read:

Welcome

You came here from there because you didn’t like there, 

and now you want to change here to be like there. 

We are not racist, phobic or anti what-ever-you-are, 

we simply like here the way it is and most of us actually came 

here because it is not like there, wherever there was. 

You are welcome here, but please stop trying to make here like there. 

If you want here to be like there you should not have left there to come here, 

and you are invited to leave here and 

go back there at your earliest convenience.

The little blank box below the meme compelled me to comment. I first noted how ugly, poorly written, racist and xenophobic the manifesto is. I should've added that is it hypocritical. I protested the meme's perceived targeting of Black and Brown immigrants and refugees (Midcoast Maine is home to a growing number of African immigrants, particularly from Somalia). I went on to state that people come here fleeing war, famine, poverty, oppression, violence and genocide, not to seize this nation like its first colonizers did—settlers who sparked a bloody pogrom of its Indigenous. And I condemned the use of the term "what-ever-you-are" (tellingly, not "whoever-you-are") as a bigoted one.

The only constant is change, I said, the places in which we live in perpetual flux. I asserted that immigrants help us see the world through new eyes, challenging our assertions and our view of the status quo and, perhaps, encouraging us to see how we might become better people through love, compassion and charity for others who are different from ourselves. Diversity is strength, I added, variety the spice of life.

Regrettably, rather than engage in discourse, embellish, defend or concede their stance, the person who shared the meme blocked me. Initially I regretted that perhaps I'd been too harsh. 

After posting my comment to the meme, I learned it had been defended as simply a remark to people moving here from nearby states. The argument seemed flimsy at best, duplicitous at worst, so I did an image search of the meme to see what more I could glean. I found American flags posted in the footers of the memes along with warnings such as, No amnesty! Go back to the shithole! Go back to Suckistan! These sentiments confirmed for me the meme's intended target: those who are far from your average Vermonter.

Pondering it further, and looking to Calvin and his disability to inform, I'm reminded of the ways in which some strangers gawk at him. I remember the way I felt—and sometimes still do even after living in Maine eighteen years—like such a foreigner here. It's in the way some folks are watchful and guarded, the way we—as adopted San Franciscans—don't always fit into the literal and figurative landscape which, in certain time and space, can be sober and conservative. I realize that, even if the meme-manifesto were speaking only to people from other states, it's still an unwelcoming, protectionist, hidebound dispatch. It still says, "Stay away!" and "You're not like us!" and "You're not welcome!" and "Go back to where you came from!"—each caution a far cry from the road sign staked in the shoulder of the turnpike upon entering Maine which says to residents and visitors, "Welcome Home."

And as I read and transcribed those postings, I recalled the same hateful rhetoric which spews and echoes from the White House. Those sentiments do not embody the America I love, nor the one I'm proud of. And I realize folks who isolate themselves, who are averse to change and who have qualms with others are fearful of the unfamiliar and unknown. But I'm grateful for this ever-changing nation, and of new neighbors from faraway places. I'm grateful for the here and the there and the in-between.

empathy and betterment

Though the grass is green, this dry spell has the shrubs curled up and thirsty. In their withering, I see myself, stressed and brittle. This journey as the mother of a child like Calvin—a teen who is legally blind, incontinent, nonverbal, physically and cognitively impaired, beaten by seizures and the drugs meant to thwart them—is a hard one both physically and emotionally. I'm chronically sleep deprived, burdened with worry, at times gripped by fear, anxiety and the shadow of devastation and despair. I wish I could somehow flee this reality. My mind is constantly buzzing with dour, unanswerable questions:

when will Calvin's next seizure be? will he choke on a piece of food? will he trip over a chair, run into a wall, fall down the stairs? do his bones ache from growing so fast? will he ever be able to tell us yes and no? will his various caregivers love him, keep him safe from harm? will he get good therapy at school? will he suffer another pain episode? will he ever be calm again? will he outgrow his seizures? will he die from one?

It appears that these burdens and worries most people don't fully understand. I see evidence in the scowls and puzzlement of strangers, in the way some folks avert their eyes when passing us, in the ways we have been dismissed or patronized by smug doctors, hospital nurses, and a handful of school employees over the years. I've little doubt that in my assertive, hypervigilant, helicopter mama-ness, I have haters and eye-rollers. There are those who don't take me seriously, think I'm oversensitive, inflexible, overbearing, unhinged. There are those who run when they see me coming, or who regularly assume the conspicuous and irksome cover-your-ass posture and pose. I wish all of them could walk in my shoes.

As is true with most of this nation's disenfranchised, misunderstood communities—the Disabled, People of Color, LGBTQI people, Muslims, asylum seekers, immigrants—Calvin and I are sometimes regarded with caution, mistrust and fearfulness, even perhaps contempt. I attribute this mistreatment to ignorance and a resulting empathy gap, an inability by some to more fully understand the struggles those on the margins of majority straight-White-Christian-able-bodied society endure, though all it really takes is openness and humility, to listen well and put oneself in other's shoes. But perhaps it's easier to avoid doing that, to stop short of admitting privilege, and less upsetting to avoid acknowledging ugly truths. But denial and indifference to the hardships of others gets us nowhere—as individuals, as communities, as a nation—on the path to betterment.

Wednesday morning, over coffee and a tasty blueberry scone at our favorite Dog Bar Jim cafe, a friend and I discussed the wave of asylum seekers from Angola and The Democratic Republic of the Congo whom our town has recently aided and absorbed. She recounted a conversation she'd had about the African soccer players who have joined the high school team, some who are quite good. Apparently, some parents are bemoaning the amount of playtime the asylum-seekers are getting (I can't help but wonder if their reaction would be different if the students were from Italy or England). When my friend's own soccer-playing son questioned it, she offered him an analogy: if he were to transfer to a new school with weaker players, he might get lots of playtime, too. A thoughtful kid, he understood.

My friend and I went on to discuss how helping asylum seekers is not the zero-sum game some purport is true. For example, we can also help our homeless neighbors and veterans, and we do. Furthermore, asylum seekers, once they're cleared to work, often fill the grueling, dangerous, tedious jobs many Americans don't want—harvesting crops, packing meat, caring for the elderly in nursing homes. My friend told me of a refugee physician who is driving a taxi just to make ends meet.

After our coffee date, I imagined the asylum seekers playing soccer with my friends' kids—one of a million things my son will never be able to do. Some of them speak four or five languages, having picked up Spanish and English on their journey north from Brazil. Many, if not most, traveled thousands of miles through South and Central America having escaped life-threatening circumstances back home. On their trek they survived beatings, muggings, hunger, thirst, and five months of travel on foot, at times through dense forests dark as night, stepping over the dead bodies of other refugees who would not make it to the USA. The ones who made it here are strong, tenacious survivors who likely have what it takes to make the best Americans. And yet, because of fearmongering and ignorance, they are sometimes met with animus and contempt, perhaps even envy and hatred. With this thought I imagine Calvin and the folks who seem to see him—without understanding his purity, love and struggle—as a freak, aversion or contagion.

I wonder what would happen if asylum seekers had the chance to tell their stories. Who would listen? Who would understand? Will these refugees, like Calvin, inspire some of us to become better people, better members of society? Will some of them give rise to other, better soccer players? Who, upon hearing their stories, would feel empathy and embrace them? And who would stand their ground, unmoved?

Carolyn Cole / Los Angeles Times

questions (some rhetorical, others not)

will these early-morning seizures ever stop? will calvin eventually succumb to them? am i slowly going crazy? is my son already insane? when will so much of white america finally confront their ugly racism and bigotry? do i have traumatic stress disorder? has being a helicopter mama ruined me? will my patience ever give way? how can i stand my angry self? will life with calvin ever get better? why did that guy sitting on his porch look away from us when i caught his gaze? will folks ever stop gawking at calvin and me? will my son ever learn how to feed himself? will he ever be potty trained? will he ever be seizure free? when might i get a full night's sleep? am i being selfish? how do i manage living with my son's chronic illness and disability? when will police ever stop mounting violence against black and brown people? will contempt for the poor ever fade? will the occupant of the oval office ever be dead to america? when will women be treated equally? what will happen to the children of refugees? how can so-called leaders seem so unmoved by their caging of humanity? why are some folks so ignorant, cowardly and afraid of change? will calvin live beyond our years? will he die next week? next month? next year? how can i keep caring for him? could i really let someone else be his caregiver? will others prey on him? have they already? why do i feel such love and the next minute such contempt? will i ever get my life back? is this my life? what would life be like without him? will i ever return to rome? paris? madrid? will we ever leave maine? why do some folks believe in a merciful god amid such vast injustice and misery?

Photo by Michael Kolster

the ice man cometh

This weekend, the current administration has plans to raid our communities in search of unauthorized immigrants to deport. This will inevitably mean that the families of some of our neighbors will be split and splintered. This means that good people who have integrated into our communities, who contribute to society, many who build our homes, care for our children, cook our food, clean our hotel rooms and homes, harvest our crops, package our meat, and who pay billions in taxes, will be torn from their loved ones and their homes. This means that people, some who have lived in this nation for decades, many who have American wives, husbands and children, and whose children are dear to our own, will be forcibly taken, put into detention and face deportation, their only offense having been to flee hunger and danger, to seek a better life for themselves and for their families, to have claimed asylum.

Keep in mind these ICE (Immigration and Customs Enforcement) agents will likely not be targeting undocumented European or Canadian immigrants. Why? Because this is a racist policy put in place by a racist administration targeting Black and Brown people who fled from nations south of "our" border. This is an example of White Supremacy. Beware, American citizens will also be swept up in these raids because of the color of their skin. Like this administration's proposed census question, its neglect of Puerto Rico, and its Muslim ban, racial profiling will be at work.

Once again, I am reminded of fascist Germany's Nazi raids of homes like mine, in the kidnapping and detaining of disabled, infirm children before going after other "undesirables"—Jews, homosexuals, Catholics, non-White Europeans. It can happen again, even in this nation, lest we forget our government's internment of Japanese Americans during World War II. Like some Jewish American activists are doing, we should be protesting these seizures and detentions of refugees. We should be shouting, "never again!"

And when it happens, these immigrant and blended families will be left in shambles. Their breadwinners and caregivers will be arrested, detained, deported. Their children will be orphaned. Their communities will be shaken. Their families may never be reunited. We should imagine their fear as our own, and condemn this administration's actions.

Keep in mind these immigrants and refugees who, study after study show, make our communities safer, have committed no crime by claiming asylum on land that was stolen from its natives by many of our White ancestors, its prosperity largely built by slaves stolen from their native lands. These immigrants and refugees are not "illegals." Ironically, their ancestors may have lived in what is now Texas, California, Louisiana. These people are human beings. They love and toil and grieve and bleed just like the rest of us. We have room for them. We'd do better, be better, if we welcomed them. Remember the quote at the foot of our Statue of Liberty:

Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!

Yes, the ICE man cometh. He will wreak havoc, tear wounds in our communities, rip apart families with his sanctimonious contempt for those he sees as threats to his privilege. But know that he is ignorant. Know that he stands on the wrong side of history. Know that his power is withering, his reign limited. Still, beware his acts of desperation. Shelter, if you can, these innocents from the ICE man's chilling grip.

Photographer unknown

secularly blessed

These past several weeks I've been feeling pretty fortunate, lighter and livelier simply knowing that my son Calvin has only had six seizures in a month's time. Granted, all of his seizures have been grand mals, but since 2007 they've been self-limiting, each convulsive fit lasting about about ninety seconds rather than the twenty or forty-five minutes of yore. Six is the rare figure equal to the least number of seizures in any given calendar month since September of 2016 when he had just five. That was when he was on a higher dose of Keppra by weight, and was still taking nearly four milligrams of the benzodiazepine, Onfi. In other words, this past month he's done as well as when he was on far more pharmaceutical medicine, albeit not as well as a nearly a decade ago when, on high doses of three anticonvusant drugs, his monthly seizures were in the low single digits. But back then we had what felt worse even than seizures: an impossibly manic, agitated and shrieking child who reduced me to tears nearly every day.

What also feels liberating to me lately is the absence of partial (focal) seizures these past several weeks. My gut tells me that their recent disappearance is due to the reduction in Keppra we did in mid May, though it could be due to the increase in my homemade THCA late that same month.

Noteworthy, too, is Calvin's recent growth and weight gain, which was enough to put him on the charts; for the second time in his life he has hit the first percentile for weight for his age. He's also in the thralls of puberty, sprouting hair in all the usual places and, on these hot, humid days, is just beginning to smell like teen spirit. Despite all of this, his seizures aren't going crazy. Knock on wood.

When I am feeling grateful about a relatively seizure-sparse month, it reminds me to be grateful for our other fortunes. I think about how lucky we are to be breathing clean air and drinking clean water, and for the privilege of living in a comfortable home in a safe part of a nation which is not war-torn. Also, we are secularly blessed this time of year to have air conditioning in Calvin's room, and to have a thriving yard chock full of beautiful flowering shrubs, a milky way dogwood in full bloom, a burgeoning perennial garden, and to be able to eat dinners in the screen porch that Michael built years ago. I feel most grateful for our friends, for our community and for Michael's job, and the fact that we have decent health insurance because, as unjust as it is, not everyone does ... yet. I thank my lucky stars for Calvin's various caregivers who help me out a handful or more hours each week. I think myself fortunate to live close to the college campus and its students, its athletic fields and their trails, and to our modest downtown. I owe a debt of gratitude to Calvin's medical marijuana dispensary where I get his THCA flower, and to the amazing folks at Palmetto Harmony for making Calvin's CBD oil. I'm grateful for wicked-smart people who have the wherewithal to advocate for women's rights, the rights of oppressed and marginalized Americans, and for the rights of refugees hoping for asylum who are currently being held in horrendous detention centers at our border, many of the children separated from their parents just as was done to enslaved Africans and Native Americans, and to Jews and others in Nazi Germany, causing great physical and psychological harm.

So this enormous gratitude and humility comes with more than a modicum of hope that Calvin's seizures continue to retreat and hope that our nation will choose to move forward—to progress—rather than to carry on its more recent backwards spiral into dirty air and water, fear, ignorance, hurt, hate and misfortune.

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

grace and disfavor

Our flights to Florida last Thursday on our way to celebrate Michael's mom's eightieth birthday were both rewarding and distressful. When boarding the first plane, we were greeted by a gorgeous flight attendant named Ada (short for Alexis Dominique) who was immediately and palpably drawn to Calvin, even letting him give her a hug before we were seated. Midway through the flight, after I had somehow managed to change Calvin's diaper in the minuscule bathroom, I read a note Ada had written to us on a paper napkin:

Keep up the great work. I am amazed at the level of strength and humility you brought on this plane when you boarded. Often times you may feel you are overlooked and undervalued. Just know that my prayer for you is one of strength and unmerited favor. While your son may not have been able to express himself to me, he said a million words with his smile and hug! I pray he continues to change lives as he did mine. LUV ADA

Her words of love made me weepy. Regrettably, however, the glow of Ada's smile and message of hope and positivity wore off momentarily during the second leg of our trip.

After deplaning, we made our way to the Southwest Airlines gate in Baltimore where we parked ourselves nearest to the gate. Calvin, who was seated in an airport wheelchair, was up to his usual antsy antics. While feeding him and waiting to board, I spied two airline personnel. One of them, a middle-aged White guy wearing his sunglasses for much of the time (indoors, mind you), was describing to the other man who I thought might be a pilot, his long-term service in the Marine Reserves. He seemed keyed-up and cocky, a bit as if he had sniffed some coke. His greenish eyes were accentuated by a buzz cut with a bristly ridge not unlike a dog's raised hackles. Each time I smiled at him, he looked right through me, then abruptly averted his gaze. I figured he must have been an airport bellhop or a technician. At one point, he turned his back on us, lowering his voice to nearly a whisper so as not to be overheard. I wondered what disparaging things he might have been saying, perhaps about certain passengers, foreigners—who knows? In any case, I got a seriously bad vibe from him. The next time he looked at me, I narrowed my eyes, wagering he was trouble.

To my utter surprise, he turned out to be one of the flight attendants. He greeted the passengers by joking that the 737 jet had just one engine, but that the plane was "perfectly fine" and "good enough" to fly. I thought his comments were reckless, especially considering the somewhat recent crashes of two Boeing 737 Max planes. When he took the mic, he delivered his safety precaution shtick, listing behaviors allegedly not allowed on the plane, such as crying, slapping, whining, complaining and microagressions. Though I knew he was trying to be funny, I winced thinking of Calvin, who was already busy committing most of the so-called forbidden offenses.

The flight attendant persisted:

"And if any of you experience microagressions, you can go sit out on the wing. It's a safe space for Snowflakes."

Some readers may not be aware of what microagressions are. Well, now is a good time to learn. Study up. Microaggressions are brief and commonplace verbal or behavioral indignities, whether intentional or not, which communicate hostile, derogatory, or negative bigoted slights and insults toward any marginalized group, such as—though not limited to—a racial or ethnic minority. 

I wondered if his comments were primarily meant for the many Black passengers on the plane, people who likely are the principal targets of microaggressions.

From the aisle seat, and without pause, I asserted myself loudly enough for several rows of passengers to hear me.

"That is not okay. That is not funny."

"We're all good, Ma'am," he replied, with a faint southern drawl seeping out from a sheepish jester's smile.

"No. YOU'RE all good," I said, pointing my finger at him, wanting badly to cite his Able-White-Male privilege.

He continued his attempt to assuage me, repeating the "it's all good" thing.

"I'm offended!" I added disdainfully, and then I let it rest.

A Black woman seated across the aisle one row up turned her head slightly in my direction and grinned; the flight attendant shrunk into the beverage-prep area. I wanted to stand up and apologize for his ignorant, bigoted behavior—his statement about microagressions epitomizing a microagression itself. Black people and other People of Color, among others, hear and experience this kind of tacitly racist bullshit all day every day, and yet most seem to have spectacular grace in deflecting it and moving on, despite being utterly vindicated if they chose to confront it head on.

So, too, went the rest of our three-day adventure with our quirky, spastic, loud, sometimes manic, non-verbal, incontinent, drooly, seizure-prone, overlooked or gawked-at teenage son—people, most of them strangers like Ada, sharing deep and moving gestures of love, kindness, compassion, grace and generosity, while others, albeit far fewer, displaying with flying colors their ignorance, disfavor and contempt.

Calvin hugging Ada (Alexis Dominique)

hell and christchurch

Every so often a stranger, acquaintance, or even a loved one will tell me—usually referring to Calvin and his afflictions—that everything happens for a reason. Years ago, I used to kindly swallow my resentment that anyone would use the trope to justify my son's suffering as some sort of divine plan aimed at teaching me a lesson. Then, as my nerves steeled, I began to meet the notion head on.

Recently, I found myself fielding the topic with someone I am just getting to know. I expressed my rejection of the dogma and my disdain for organized religion. The conversation evolved quite civilly, as I questioned facets of the Bible and her notion of Hell. She was slightly hesitant to admit that, because I'm a non-believer, I will end up there someday. In other words, in the minds of some, Hell is still a real place where unrepentant sinners go, along with, I assume, the majority of the world's population who are Atheists, Agnostics, Muslims, Buddhists, Hindus, etc., even if they're good folks. We spoke a bit further on the subject of Jesus who, despite my secular bent, I think of as having been a righteous dude, someone who I wish more people, namely his followers, would actually embody; the world would be a better place, I feel.

For hours after our conversation ended, I thought on the subject of god and religion. I lamented the fifty Muslim men, women and children slaughtered by a heavily-armed White supremacist yesterday in Christchurch, New Zealand. I regretted some people's rejection that the POTUS is partly to blame because of his maligning of Muslims, vilification of immigrants, regular inciting of violence, and his refusal to denounce White Supremacy.

I was left with many (rhetorical) questions:

What kind of god turns a blind eye to these bloody atrocities? What kind of god neglects the suffering of children? What kind of god would pick one religion over another? What kind of god has such conceit as to damn his own children to eternal Hell simply because they don't accept "Him" as their savior? What about the multitudes of good people who lived before Christ existed, and the billions who may never have knowledge of him? And what happens to shithead Christians? Where do they go?

Pondering those questions about god, while the mist settled on the snowy field behind our house, the wind audibly pressed into the windows, my boy sighed from the room next door, I considered Nature—and came to the same conclusions I always do:

Not one who is merciful. Not one who is just. Not one I can or would want to believe in or trust.

The attack on the Muslim community of Christchurch, while disturbing, was not shocking to me. The White supremacists spouting hateful rhetoric against Muslims, Jews and People of Color are becoming increasingly emboldened to act on those impulses. Their enmity is stoked by bigoted, fearmonging leaders who like to call themselves Christians and who stand to gain from sewing this kind of division. I am once again reminded of the systematic murder of disabled and infirm adults and children like my son Calvin by Nazi's during World War II. Thought to be a stain on the Arian race and a burden to society, they were some of the first in millions of mostly Jews to be exterminated by Fascists under Hitler's rule.

This sickening ideology of White supremacy has never been eradicated. It simply goes from skulking under rocks and in pockets to brazen examples of hatred, violence and bloodshed. It is grounded in abject ignorance. Its zealots exploit baseless fears of other, using scapegoats for their own failings. And, as in the case of slavery and the subjugation of women, they often use God and the Bible as their grounds.

So, perhaps Hell is not a myth as much as it exists on earth in the form of disease, genocide, oppression, war, famine, rape and massacre. Ironically, we even find Hell in houses of worship, and in places with names like Christchurch.

Hands from Hell sculpture, Thailand

empathy

The sky opened up at one a.m. I rose from a deep dream to shut windows in the house so the rain wouldn't come in. As I was lowering one sash, I heard the quick slap-slap of a runner's gait on wet pavement. Peering out, I saw a guy run past under the streetlight. I recognized him. A youngish man compared to me, I'd met him in town years back. We had exchanged pleasantries. Later, I had greeted him several times as he ran past me on the street and in the trails around the field, his waif-like frame, bony limbs and gaunt face as distinctive as his long wavy hair and shy smile. Had he been caught in the deluge? Or had he—perhaps anorexia's captive—been compelled to run despite the storm's arrival? Or, had running in the middle of the night been his liberation, his savior, like writing and gardening have saved me from the grief-grip-loss that my son embodies?

When I put Calvin on the bus yesterday we were no doubt floating within a cloud, its sprays of mist collecting on our heads, dripping from trees, droplets adorning webs and beading up on leaves. If not for a good breeze, the humidity would've proven oppressive. Later, on my way back from a walk with Nellie, I stopped to talk with a neighbor. A nicely-dressed woman drove up curbside and exclaimed that she was looking for a notorious local man so she could run him down. The man she hunted had been seen recently knocking and entering open homes in the area, taking cash and jewelry, ostensibly to support his heroin addiction. Police confirmed that I'd seen the stranger earlier that morning knocking on the door of a home down the street. Though I didn't see him enter, somehow I'd thought his incessant knocking odd, so I memorized his description: white guy, medium build, brown hair, early forties, khaki shorts, dark hikers or sneakers, long-sleeved tee.

I winced when the driver, a colleague of Michael's who I don't really know, said she wanted to run this guy over. She claimed he was violent. I gently (hopefully) challenged her notion, but she could provide no supporting evidence. I tried to imagine what I would do if I were in his condition. I remembered a piece I heard about a former addict who described what addiction was like. I told the woman I thought it sad that the guy was in such a state that he needed to steal from others. She lamented she'd been dealing with him for years. I wondered what I'd do if I came across him, wondered if I'd give him a buck or two.

Troubled, I removed myself from the conversation, crossing the street to visit with Woody who was sitting on his porch. He was familiar with the man police were pursuing. The man's family, Woody said, had always had some sort of trouble as long as he could remember. I expressed my regret that anyone get hooked on opioids, knowing full-well—contrary to popular myth—that the average addict begins with opioids prescribed for pain by unwitting and/or cavalier physicians. Woody said the guy should get some help. I countered by admitting that I'd never been addicted to a substance, but that I imagine heroin must be nearly impossible to kick, perhaps even making it difficult to seek—or even want—help.

What flashed through my mind next was a glimpse of how others might view me and Calvin; I wondered what kind of judgment family, friends and strangers pass on us—what did she do wrong while pregnant? why is she so strict with her son? why so lenient? why is she so demanding and impatient? why is he so wild? why is she so skeptical, so harsh? why does she let him get away with this, yet make him do that?

I pondered compassion and what I see as today's empathy gap, which is widening in an increasingly polarized nation with a self-obsessed, callous man at the helm.

At the close of the day, while putting on Calvin's nighttime diaper and pad, giving him his cannabis oils and Keppra, and brushing his teeth, I listened to a piece on National Public Radio. Journalists spoke with the Idaho Director of Agriculture and to a pig farmer who described the hardship in the face of the warring trade tariffs that The Donald put in place. Hearing their distressing stories, I got teary.

"No one deserves to suffer like that," I said to Michael, "even if they voted for him."

Michael, though he agrees with me that support for The Donald is short-sighted at best, expressed his dubiousness that any of us is deserving of anything—beyond human rights such as healthcare and education—whether it be good or bad. I get it.

As the news segment closed, a wave of sorrow washed over me, leaving me wishing relief for the hard-working farmers, many who risk losing their businesses because the tariffs stand to strangle the decades-long, worldwide trading relationships they've developed. I went to sleep thinking of them.

Hours later, in the shiny black after midnight, I watched the jogger sail down the street into darkness, the driving rain matting his hair, his spine and ribs exposed beneath a soaking shirt. I wondered if he was cold. I thought of the petty thief rummaging desperately through strangers' homes just to get enough dough for his next fix. I wondered if he is lonely. I thought of the farmers, heads in hands, families to feed, crops and livestock and legacies in jeopardy, and I wondered how they'll cope. I thought of my sweet, innocent, unknowing Calvin sleeping upstairs, seventeen days since his last grand mal seizure. It's no matter, but empathy gave me some trouble falling back to sleep.

changes

It couldn't have been clearer to me that Calvin would have a seizure by this morning. In his own way, he tells me. I just have to watch and listen. Yesterday, he showed nearly all of the usual, and some not-as-usual, harbingers: bloody nose, whininess, major finger snapping and other repetitive behaviors, pacing, warm hands, uber-rashy butt, agitation, restlessness, intensity, detachment.

At five a.m. it came. Perhaps the extra doses of concentrated THCA cannabis oil just past midnight and at three o'clock impeded its arrival. As I spooned with him after the seizure, I felt how calm his body was, noting the absence of what I call aftershocks—shivering and shudders which often occur in the wake of grand mal seizures. I had no doubt THCA had something to do with his serenity.

Mostly awake since three and therefore exhausted, I still had a hard time relaxing my mind. Lying there, again I considered the world. I feel it going through its own convulsions, having more than its share of anger, hatred and greed, its racists, abusers, tyrants and liars bent on destroying humanity at nearly any cost, lusting for power through intrigue, attempting to avoid capture. What drives these men to such extremes, these gun-toting terrorists, abusers, trolls and bots, these conspiracy theorists, these despots and deceitful oligarchs? Meanwhile, in my arms lies one of the purest souls on earth, a boy who inspires love and compassion, requires my mindfulness and who, though he tries my patience at times, makes me want to live simply and be a better person every day.

Yesterday, when reading about the Marjory Stoneman Douglas high school students traveling to the Florida state capital to express their desire for the legislature to pass stricter gun control laws, I thought about Calvin. I imagined him being crammed into a closet with twenty others his age, little room to breathe, waiting silently for ninety minutes until the shooter fled the scene. I imagined Calvin—if he were a typical kid—fearing for his life, texting us, being riddled with bullets or sobbing when finally set free. I imagine him, later, boarding a bus with his classmates to march on state capitals and Washington DC demanding changes to gun policy. He'd be that kid. He'd change the world. No doubt he has, in his own way, inspired such things in others and in me.

A former teacher—one who has never met Calvin nor could comprehend the depth of his disability, who had no children of his own much less a non-verbal, incontinent, uncoordinated, delayed, epileptic one—once asked me why I named my blog Calvin's Story, or rather, why I didn't write more often from my son's perspective since it bears his name. I recall being slightly irked and thinking, perhaps even saying to him, that Calvin informs my world, and since he lacks the ability to speak, I must lend my voice to tell his story—which, because we are so inextricably linked, is ours—the one he might have told if he had been born normal. In short, I have to dream. I revisit that question from time to time, checking in with myself to ensure I am doing justice to Calvin's unusual and complicated childhood experience, exploring notions of my own with regard to him hoping I can extract some meaning from it—which is not to say I am searching for answers as to why he was born so afflicted. (Shit just happens, with no inherent reason, no purpose. Prayers prove useless, the absence of God in schools a lame excuse for mass shootings; pedophile priests still lurk in churches.)

This morning, I considered our children's truths and stories as told by themselves and their parents when I heard a former GOP congressman expressing doubt that the teenagers organizing a nationwide rally against guns—thinking the students incapable because of their youth—are doing so of their own volition. Instead, he suggested that they are mere pawns of leftist organizations. Clearly the response was from someone too detached to understand young, informed, impassioned minds, or too partisan, ignorant or cowardly to think, appear or admit otherwise. His lame statement led me to recall the David Bowie lyric I read yesterday from his song Changes:

And these children that you spit on, as they try to change their worlds, are immune to your consultations, they're quite aware of what they're going through.

I went on to ponder the right-wing conspiracy theorists who've shamefully suggested that the Florida school shooting, along with the Sandy Hook massacre, was a government ruse and that the students are actors. I wonder what in the hell these losers, jerks and trolls want to do to the virtuousness of the world. I can only hope, and work, to squash them all and liberate the truth, and soon.

And so, as my son spasms, so does the world. But there are elixirs. There is cannabis to fight seizures, there are fathers to soothe and mothers to spoon, there are parents and educators teaching their kids honesty and virtue even in—and perhaps owing to—the absence of god in schools, because it is very simply the right thing to do. There is love to conquer hate, knowledge to erase ignorance, truth and fact to crush lies and rumors, compassion to smash fearmongers, misers and fools, virtue to rule over vice, and the voices, bodies and ballots of youth to enlighten, change and lead us, to liberate and save a convulsing world.

good people and bad men

I often ask people, mostly Calvin's classmates, if they know why I think Calvin is the best person I know. Most of the children say that it is because he is my son or because he suffers so much and still keeps on going. When they are done guessing, I tell them it is because he doesn't have a mean bone in his body, wouldn't hurt another person purposefully and, perhaps most of all, he doesn't discriminate.

After hearing what the shameful POTUS said recently about places like Haiti and Africa where black and brown-skinned people live, I thought about what a vile, racist person he continues to prove he is.

This morning, I read a blog post from a pastor named John Pavlovitz, who regularly nails it when it comes to talking about injustices. This time is no different. Rarely have I heard a more fitting and deserved description, and so I am going to share his righteous words here:

Good People Don't Defend A Bad Man by John Pavlovitz

At times in this life it can be a challenge to figure out who the bad people are, but sometimes they help you.

Sometimes they do the work for you.

Sometimes with their every vulgar, bitter word from their mouth, they testify to their personal malignancy and they make it easy to identify them.

Generally speaking, there are things that good people do and things good people don’t do.

Good people don’t refer to entire countries as “shitholes”—most notably countries that have given birth to our very humanity; ones that for hundreds of years have been colonized and poached and mined of their riches by powerful white men; countries whose people have been enslaved and sold and forced to come and build your country. 

Good people by any measurement we might use—simply don’t say such things.

Of course good people also don’t say they could grab women by the genitalia, either.

They don’t defend racists and nazis and call them “fine people,” days after murdering a young girl and terrorizing an American city.

They don’t brag about their penis size during debates, or suggest protestors at campaign rallies should be roughed up, or crack jokes about captured war heroes, or make fun of the physically disabled.

They don’t.

Good people don’t tweet anti-Muslim rhetoric in the moments immediately following a bombing in order to bolster a position. They don’t leave American territories filled with brown skinned people without power for months upon months, after publicly ridiculing their public servants and questioning their people’s resolve. They don’t erase protections for the water and the air, for the elderly, the terminally ill, the LGBTQ. They don’t take away healthcare from the sick and the poor without an alternative. They don’t gouge the working poor and shelter the wealthy. They don’t abuse their unrivaled platform to Twitter-bait world leaders and to taunt private citizens. Good people don’t prey upon the vulnerable, they don’t leverage their power to bully dissenters, and they don’t campaign for sexual predators.

But this President is simply not a good human being, and there’s simply no way around this truth.

He is the ugliest personification of the Ugly American, which is why, as long as he is here and as long as he represents this nation, we will be a fractured mess and a global embarrassment. He will be the ever lowering bar of our legacy in the world.

And what is painfully obvious in these moments, isn’t simply that the person alleging to lead this country is a terrible human being—it is that anyone left still defending him, applauding him, justifying him, amening him, probably is too.

At this point, the only reason left to support this President, is that he reflects your hateful heart;he shares your contempt of people of color, your hostility toward outsiders, your ignorant bigotry, your feeling of supremacy.

A white President calling countries filled with people of color shitholes, is so far beyond the pale, so beneath decency, and so blatantly racist that it shouldn’t merit conversation. It should be universally condemned. Humanity should be in agreement in abhorring it.

And yet today (like so many other seemingly rock bottom days in the past twelve months) they will be out there: white people claiming to begood people and Christian people, who will make excuses for him or debate his motives or diminish the damage.

They will dig their heels in to explain away or to defend, what at the end of the day is simply a bad human being saying the things that bad human beings say because their hearts harbor very bad things.

No, good people don’t call countries filled with beautiful, creative, loving men and women shitholes.

And good people don’t defend people who do.

You’re going to have to make a choice here.