present trouble

On too many days during the past three-and-three-quarters years, I'm reminded that if my son Calvin had lived in Hitler's Germany, he'd have been among the first to be swept up by Nazi thugs, then executed in the regime's first systematic "cleansing" of "undesirables." In the name of extreme nationalism, millions were rounded up like animals and slaughtered: the mentally ill and physically disabled, the elderly and infirm, homosexuals, Romanis, Jews and others.

Last week, I heard and read about the murder of yet another unarmed Black man at the hands of police, this time in Rochester, New York earlier this year. His name was Daniel Prude. He had left his brother's house in an erratic, psychotic, state. His brother called the police for help. Instead, Daniel became another victim in this nation's historic and present trouble of violence against Black people.

It was nighttime in March. By the time the cops arrived, Mr. Prude had taken off his shirt and long johns and was running around naked in the cold. The officers handcuffed him and put a spit mask over his head. Even as Daniel pled with officers to remove the mask, they held him down, his face pressed into the pavement, until he passed out and his pulse stopped. Though he was revived in the ambulance, he never regained consciousness. He died seven days later.

We know of dozens upon dozens of stories like this—unarmed Black men, women and children being murdered by police and vigilantes. Each account is sickeningly reminiscent of past ones—Jacob Blake, George Floyd, Breonna Taylor, Eric Garner, Tamir Rice, Philando Castile, Trayvon Martin. Unless we as a nation do something different—unless we reform the police and evolve as a society—these atrocities will continue.

Despite gains made during the Civil Rights Movement, Black people in America are still treated by many in law enforcement and others as subhuman. As if animals, they are falsely feared and made into monsters. They are regularly maligned as criminals. The Black Lives Matter movement is vilified as sinister, though their platform is righteous and inclusive, its simple goals dignity, opportunity and equality for Americans who, since slavery, continue to be exploited, terrorized, lynched, targeted, marginalized and abused. Some people's refusal to say, Black lives matter, serves as ample evidence of the need to underscore that very truth.

I worry about the well-documented infiltration of racism, White supremacy and far-right militancy into our nation's law enforcement, and its subsequent effect on communities. I understand what a privilege it is to have white skin and to jog, drive, jaywalk, shop, hike, play, loiter and prank with impunity. I know what it is to be the mother of a child who is misunderstood and undervalued by many. I read too many accounts of boys with autism and other mental health problems being killed by ill-trained police. I hear other's messages which are conveyed to me in real words and expressions of contempt and indifference:

Look at that kid. What's wrong with him? Shut that child up. Why can't she control him? He doesn't belong here. He's disgusting. I don't want to have to look at him. Pretend he doesn't exist.

I see a similar contempt for and misunderstanding of Black people and their movement. I hear people scapegoat and victim-blame African Americans, hear people regularly assign criminality to Blackness. I hear their message in words and expressions of contempt and suspicion of Black victims:

He must be guilty of something. If only he had complied. He had it coming. He was a monster. The officer feared for his life. He had drugs in his system. It looked like he had a weapon. Why did he run? He shouldn't have been there doing that in the first place.

Yesterday morning I heard an excerpt from a James Baldwin essay entitled, The White Problem. Though written in 1964, it still resonates today:

The people who settled the country had a fatal flaw. They could recognize a man when they saw one. They knew he wasn’t anything else but a man, but since they were Christian and since they had already decided that they came here to establish a free country, the only way to justify the role this chattel was playing in one’s life was to say that he was not a man. [Because] if he wasn’t, then no crime had been committed. That lie is the basis of our present trouble.

I consider, again, the state-sanctioned murder of innocents and "undesirables" in Nazi Germany and in this nation. I lament the dog-whistle politics of the current administration. I say a secular prayer for the men and women who are fighting for equal justice in a nation that still hasn't atoned for its sins or lived up to its original promises. I think about my new pen pal who is on death row, whose first letter to me was humorous, heart-rending and tragic. He doesn't deserve to be there; no one does.

As always, I muse on my son Calvin who, though nonverbal, autistic, physically and intellectually stunted and disabled, is as worthy and lovable as any of us. Then, I imagine those like Daniel Prude, whose lives were snuffed out in the street as if they didn't matter. No doubt they were worthy and madly lovable too.

i can't breathe

Summer 2014

The evening was blazing hot. I was in the middle of mixing myself a bourbon with ginger beer on ice while Michael busied himself cooking our dinner. Calvin was screeching and spinning in his johnny-jump-up. He’d had an off day, whining a lot at who knows what. When I turned to check on him I saw that he was jackknifed in his jumper, his contorted limbs rhythmically pulsing. 

“Oh no!” I cried, as Michael and I ran to his side and began prying his stiff body from the jumper, the crotch of which was wedged tightly between his rigid legs.

I had a hard time telling if or when the seizure was over, except for that he had begun breathing again. I gave him several drops of cannabis oil since, even though the color in his face had returned, he continued to twitch and flinch like a tortured bug. Within minutes the spasms had subsided and he fell asleep on the couch.

Around the same time, a man named Eric Garner and a man named Michael Brown also stopped breathing.

The seizures continue to batter my son every six to nine days, though now they occur almost exclusively in the middle of the night. Calvin had a couple of grand mal seizures two nights ago, but I'm confident that if in their aftermath I hadn't given him extra doses of my homemade cannabis oils while lying in bed next to him he'd have suffered a third one.

Epilepsy is relentless. The seizures and the pharmaceutical drugs used to treat them rob our children of meeting their full potential, of living life to its fullest and often make them feel horrible. It pains me to see Calvin suffer, particularly when there seems to be nothing I can do. Try as I may, the seizures continue their steady assault on our ten-year-old son's brain and body. Our only hope in stopping the battery, it seems, is to continue giving Calvin an herb—cannabis—which is illegal at the federal level. In doing so we are essentially breaking the law. Luckily, I am insulated by a state law which sanctions the use of medical marijuana ... plus the fact that I am white.

Perhaps experiencing the injustice—the plague—of epilepsy is partly why I empathize so deeply with the family members of the unarmed black children and adults being gunned down at an alarming rate by white police officers and bigots like George Zimmerman. Lately, when I watch Calvin in the grip of a seizure, watch him convulse, watch his skin and lips blanch, his eyes sometimes rolling back or vacant and at others full of fear, I can't help but think about the scores of mostly black victims that continue to be sprayed with bullets, cuffed, punched, tasered, gassed, pepper-sprayed and choked to death by white cops. How did these fellow humans feel during their assaults? How do their loved ones feel when they see the distressing videos and hear their beloved's last words:

it's not real. i don't have a gun. stop shooting. officers, why do you have your guns out? please don't let me die. what are you following me for? mom, i'm going to college. why did you shoot me? i love you too. i can't breath.

Some of you might wonder why I continue to write about racism in a blog largely dedicated to motherhood, epilepsy and disability. Some of you might be fatigued by the rash of stories in the news and peeved by the talk of racism, by the inconvenience and violence of protests, by the lingering frustration and fury over the grand jury failures to indict the white police officers in the Michael Brown and Eric Garner killings, uncomfortable because of the Facebook posts condemning racism, police brutality, riot gear, racial profiling and the videos showing police assaults. Maybe you're sick of it all. Maybe you wonder why I continue to fuss about it. I'd say those are white-world problems, and I'll tell you why: Because as someone who feels deep despair, anger and hopelessness seeing my child pummeled by relentless seizures, seeing him stop breathing for minutes at a time, seeing his progress choked by vicious drugs and to be always fearful of the next attack thinking it might be his last, I shudder to imagine what it must feel like to be a person of color today and to suffer under a system built to oppress them, to mother a child who will no doubt at some point in his lifetime be wrongly profiled, targeted, pulled over, frisked, suspected, feared, questioned, blamed, arrested, charged, beaten, incarcerated or murdered by white law enforcement officers and a white criminal justice system, to live in a country where most white people deny that racism exists or is at the root of these kinds of wrongdoings. I write about it because it is wrong and pervasive and I love and understand my friends and it is a problem that is not simply going to disappear until white people start to understand there is a problem, until, perhaps, white people start to feel uncomfortable, which is little to ask considering what black people have had to endure for four-hundred years.

The night after the Grand Jury declined to indict the white police officer who put Eric Garner in a choke hold that lead to his death, in the wake of Calvin's seizures, I laid awake lamenting the outcome and the plight of so many others and I thought about my fortune: My boy is alive. I live a life of privilege in a nice home in a safe community with a husband who has a good, steady job. We've got plenty of food, a comfortable, reliable car, good health care and money to spend—and I am white, which is not to say I am proud to be white. I can go to our local dispensary and purchase one ounce of the best cannabis bud which fills more than half of a large mason jar. I can transport it home in its white paper bag never giving it a second thought. At home, I can make it into an oil which I give to my son to lessen his seizures. I can tell friends about it. I can blog about it. I can feel relatively sure that I won't be arrested for possession and put in jail or have my son taken from me by Child Protective Services.

In a different world, one in which I were black and male, would I make it past security even with my medical marijuana cards on me? Would someone call the cops because I looked suspicious since I was wearing a hoodie and I had my hands in my pockets? Would they believe I was buying the cannabis for my ten-year-old son's epilepsy? On the way home, would I be pulled over for, as some say, driving while black? Would I be harassed? Would I, in my legitimate expression of anger and frustration over the injustice, be seen as belligerent, be cited, be assaulted, be arrested, be put in a chokehold, be thrown in jail? Would they shoot me while I reached into the glove box to get the car's registration? Would my last words be, "I can't breathe"?

https://twitter.com/shebe86

puff of smoke

The first frame of the cartoon depicts Jessie Jackson and Al Sharpton wishing upon a star for an end to racial strife and bigotry. In the next frame the two men disappear in a puff of smoke.

I took offense to the caricature that arrived in my email inbox, and it got me thinking ... hard. My take on it is that the illustrator and those sharing his views think that outspoken critics of racism, particularly African American ones, are culpable for inciting racism in this country, and if we just got rid of them (and perhaps those they represent?) we could eradicate racism once and for all. The mere thought of this kind of logic turned my stomach.

It made me think of Calvin, my darling, disabled, legally blind, non-verbal, epileptic, medicated nine-year-old boy, and of the documentary I just watched called The Architecture of Doom. The film, which illustrates Nazi attempts to purify their nation, explains the miserable rational for the systematic extermination of the infirm, the disabled and the Jews, all of whom were thought, erroneously, to be contributing to Germany’s downfall.

Then my mind spun to a world in which diehards grumbling about women’s liberation might’ve thought that the annoyance would simply disappear if the figureheads of feminism, women such as Susan B. Anthony, Gloria Steinem, even Lilly Ledbetter, were simply squashed. I thought of the nations in which girls and women are not allowed to go to school, to work or to show themselves in public, and of countries like India who so undervalue the gender that abortion of female babies has lead to a shortage of marriageable women, and countries in which women are blamed, shamed and punished for being raped. And then I thought, of course, of the brave Pakistani teen, Malala Yousafzai, who was shot in the head by the Taliban because she campaigned for girls' education. Thankfully, she did not go up in a puff of smoke and her voice advocating for change can still be heard.

I thought of a world in which people who grouse about disability rights might prefer that disabled people, like Calvin, simply disappeared. I thought of how this country undervalues the lives of disabled people, discriminates against those with physical or mental deficits, is blind to their unique contribution to a rich, diverse and compassionate society. I remembered how, not long ago in this country, in some states people with epilepsy were forbidden to marry and in others were forced to be sterilized. To this day many people with epilepsy continue to hide their affliction and keep secret that their children suffer the disorder for fear of being outcast.

I wonder why some people in society, such as the comic’s author, hunger to suppress the voices of common decency who champion the ethical and equal treatment of all citizens, how a society can undervalue and subjugate women, minorities, immigrants and the disabled and go so far as to blame them for the ills of a nation when the opposite is likely to be true? Why? Because of fear, ignorance and the indifference of small minds.

And so to defy these bitter wishes I will love Calvin for who he is and for his loving contribution to our family, our community and to the human race. I will continue to exalt the powerful and virtuous voices of truth and equality from the mouths of the oppressed—black people, women, gay people, immigrants and the disabled. I will hope for a nation that separates itself from much of the rest of the world, embraces and respects all walks of life and I’ll wish that any misguided ideology that slights its own decent citizens is seen for its prejudice and simply goes up in a puff of smoke.

Internet image

angels and thugs

On Monday I wrote a post on the Trayvon Martin shooting called To Kill a Mockingbird, expressing my regret about the incident, its handling, its outcome, about racism and about the ignorance and hatred some express toward those who are seen as different. One reader commented:

Trayvon was a thug going down a path in life of criminal choices and messed with the wrong "white cracker" as he put it and paid the ultimate price.

I responded to the anonymous reader by noting that Zimmerman, the pursuer, was in fact the one with the violent criminal record, while Trayvon, the victim, was an innocent teen minding his own business, likely trying to defend his own life against an armed predator. He did not deserve to die.

In a stream of consciousness, I thought about my cute, sweet, innocent son Calvin, and the remarks I sometimes get such as, “He is an angel who was put on earth to teach us something.” I can’t help but think that these comments—the one in response to my blog post and the ones said about Calvin—are somehow, however odd it may sound to some, similar.

To say that Trayvon Martin was a thug—a boy with no criminal record, a boy not unlike most American boys his age, similar to boys I grew up knowing who cut school, clowned for the camera, perhaps smoked pot, wore hoodies and sneakers, flipped the bird—smacks of racism, a convenient attempt to lay blame on the black victim in the same way a rape victim is often seen by misogynists as somehow culpable for her attack. To say that Trayvon was a thug ignores—while at the same time epitomizes—the miserable truth about racism and racial profiling and their egregious impact on our criminal justice system, on our prisons, on the safety, harmony and cohesion of our society. It surrenders to stereotypes rather than facing facts, as uncomfortable as they might be for some individuals: that a black male youth was the victim, not the miscreant. Trayvon was not a thug.

Similarly, to say that my disabled, developmentally delayed, non-verbal, seizure-ridden, drugged-up little boy Calvin was put here to teach lessons to those of us privileged enough to have good heath and fit brains, succeeds in ignoring the pain, burden and senselessness of a suffering child. It is an effort to make it all okay, to mitigate what is most unfortunate and harrowing rather than facing the many truths of a disabled child’s life, which, along with joy, often includes hurt, frustration and heartache. To justify a child’s existence in this way is to say that somehow it is their charge in life, that their suffering was meant to be. How else can the words be interpreted? Certainly, I have the ability to learn from Calvin, which I have done and continue to do, but he is not here expressly for that purpose. There is a distinction. Calvin did not deserve to pay the price of poor health for my gain. Calvin is not an angel.

Yesterday morning I saw a very sad video of my friend’s child, August. He is a boy who has a lot in common with Calvin, though he is several years older. For unknown reasons, August has regular bouts of extreme extension, lasting days on end, causing him to arch in a way that appears impossible for a body, even a young one, to do. In the video August whimpers and groans, and in his pain I see my little Calvin, who often exhibits discomfort, which at times is difficult if not impossible to ascertain or remedy. Though the video includes a caution as to its disturbing nature, I chose to watch, did not avert my eyes, because I want to know, I want to tell people everything about our children, that they are often happy, sweet kids but that they are also sad and often suffering. They are not on this earth to improve us. They are just here and we are here for them, and thought it might sound harsh, it is presumptuous and flabby to say otherwise, even if it is intended to be kind.

To hold these beliefs—that Trayvon was a thug or that Calvin is an angel put here to teach us lessons—is to dismiss one’s self from the messy reality of life’s inequities, to turn a blind eye to the hard questions and the difficult challenges that racism, disability and suffering present to those who experience them and to the larger society, simply because somehow it’s easier, it’s comfortable, it’s convenient just to believe in angels and thugs.

change

Not everything that is faced can be changed, but nothing can be changed until it is faced.

—James Baldwin

photo from http://www.rageagainsttheminivan.com/2013/07/why-im-encouraged-after-trayvon-martin.html?m=1

to kill a mockingbird

Back in my late twenties I entered into a five year relationship with an African American man named Jim. Despite the fact that he was smart, handsome, charming and funny, the relationship had its problems, the least of which was race. But what I learned during those five years has stayed with me, and I’ve used those lessons to try to improve myself, and the world, in whatever small ways I can.

What I learned was that Jim, like the rest of us, had been taught—wrongly—by society to fear black men. I learned that most black men—innocent ones—get stopped on the street, pulled over, harassed and bullied by white men in uniform for nothing other than minding their own business. I see vignettes of these injustices and discrimination frequently: the young black man in front of me about to board the airplane who is the only person asked to check his bag; the sharp dressed black man in the department store who is mistaken for the clerk; the African American restaurant guest who is purposefully neglected by the staff; the racist, bigoted Facebook posts about black men and prison garb.

Saturday’s verdict in the George Zimmerman case—an acquittal handed down by a mostly white jury—reminded me again of the gross injustices that occur in this country from small scale to large, reminded me that we might be better off if we lived in mixed communities rather than gated ones, reminded me of the countless times I’ve heard white people complain that they shouldn’t have to apologize for slavery, and how I’ve told them that they’re missing the point, that what society must put right is the continued oppression of black people.

Years ago, I remember my mother remarking on a dapper, tall black man stepping out of a luxury car. Her take was that he must’ve been a professional basketball player. “Why not a lawyer or a doctor or a banker, Mom?” and she seethed and spat angry words at me for what she felt was my judgment of her. Her ignorance and subsequent reaction to my query made me ill. And It wasn’t that long ago that I heard someone close to me use the N-word. I chastised her, because I believe people must be held accountable for their words as well as their actions, lest those insulting words spin out of control into hateful ideals and paradigms, into contempt, into vicious conduct fueled by that hate.

While unravelling in the shower, my mind poured over images of Trayvon Martin, the unarmed youth carrying skittles and iced tea who was gunned down by an over-zealous wannabe cop with a violent criminal past. Then I thought of the teens and young men with autism and Down syndrome who have died at the hands of security officers who used excessive force because of their ignorance, because of their fear, perhaps because of their loathing. I thought about the gawks and stares—and occasional rude remarks—that Calvin and I get every time we go out in public, which sometimes reek of disgust, even glowering in the eyes of some children—yes, children whose behavior is most obviously and purposefully ignored by their parents.

Then I reeled thinking of the Central Park Five, of Rodney King, of Martin Luther King Jr., of Oscar Grant gunned down at point blank range by a Bay Area Rapid Transit officer in the Oakland Fruitvale station, of the countless stories of African American men, women and children who have died—unjustifiably—at the end of a white man’s gun, in a burned-out church, at the end of a noose. I thought of the millions of black men incarcerated for years in jail cells or on death row, no doubt many innocent of their charges or serving weighty sentences for ridiculously non-violent crimes.

And then finally I am reminded of Harper Lee’s To Kill a Mockingbird, wherein a crippled black man, Tom Robinson, is convicted by an all white jury of a crime he didn’t commit against a white girl who was being abused by her father. I came across this passage of young Jem speaking to his father, Atticus Finch, who had defended Tom in court:

"Atticus—" said Jem bleakly.
He turned in the doorway. "What, son?"
"How could they do it, how could they?"
"I don't know, but they did it. They've done it before and they did it tonight and they'll do it again and when they do it—seems that only children weep. Good night."

I’m weeping, Trayvon, I’m weeping, and so too would Calvin be if only he could know.

Trayvon Benjamin Martin, February 5, 1995 – February 26, 2012