Tuesday, February 21, 2017

and she shouted, "Bravo!"

Girl on the Flying Trapeze, 1936 Julia Thecla

her ethereal and sensuous portrayal of dreams, fairytales, and planetary realms were extraordinary explorations of alternative social orders.
DePaul University Art Museum, describing Julia Thecla 



I watched Wings of Desire the other night on a bed in a dark hotel room for the thousandth time, had forgotten the black and white film turning to color every now and then. We are black and white yet both see color, now and then, but this was after and one of us dreamt (him) and the other knew every word (her). Now and then. The German faces, the wide smile, the tilted head, the closed eyes. There's something spiritual in the library's murmurs, the way the angels walk among books, heads bowed over them. Wings on a bronze statue, a wall that divides Berlin. An angel lays his head on the man's shoulder, yet the man jumps over anyway and the angel screams. The desire for life. The woman on the flying trapeze, how later she shrugs out of her robe, her back, sinuous. The desire for love, to love. Even before I swung above the crowd myself, then, I was told you've an amazing back. I've a memory like a trap. I remember every word. You've an amazing back, he said. Now. Twice I've been told, then and now.

This morning Sophie groaned in her sleep before dawn, and I ran into her while she seized. It was a violent one and I was smacked in the face by one of her arms. I bent over her, gathering the limbs, what flies. I've walked the rope and swung on the trapeze, so many little people below. My back is strong. It never hurts. I don't feel gentle toward the situation in some moments. I don't feel gentle toward her. It's where I leave off and she begins and there's a space there filled with nothing. When I gathered her in my arms, limp now (then), a pieta, I did cry. And cry. And cry. And cry. She was spent and it cost me tears which are, in comparison, nothing.

The dog barked once and a package was thrown through the slot of the front door, made a thump. I left Sophie to go and pick it up, a small but heavy box from Seattle. Inside, a heavy book, The Complete Poems of Anna Akhmatova, translated by Judith Hemschemeyer. A pink Post-it over the crook of the poet's nose:

Dearest Adorable --
Reach for this
volume when
you most need
to counteract
the crazy.

❤️️  Leslie  xo

Yes, I took it as sign.
The signified and the signifier.

I seem to myself, as in a dream,
An accidental guest in this dreadful body. (Anna Akhmatova)



Several hours later, with no prompt from me, I received a picture of a painting on my phone, a girl on a trapeze, awkward yet strong.

I am thinking of you, she said (Tanya, my friend, not the girl). I asked her (Tanya, not the girl), Who painted this? 

Julia Thecla, Tanya said, I love her. 

Thecla is a forgotten Chicago painter of the 1930s and 1940s, in the school of magical realism. I did not know her.

Magical realism, a literary genre to which I have been drawn (then) -- Marquez, Borgia, Allende -- is also a genre of art, I learn (now). There are details (Sophie's groan, her bed, the seizure, her arms, my back, my tears, her limp body) that are real and then something strange, unbelievable  (the thump, the package, the Akhmatova, the note, the painting, the girl on the trapeze, ), through a hole in the door, via air.

I fly through the air with the greatest of ease

Monday, February 20, 2017

It Never Rains in Southern California




Well, I guess I should say Happy President's Day!

I posted the following on my Facebook page for an Andy Warhol fifteen minutes and then decided to take it down because it's so vile. Someone I know asked me whether it was real. Yes, it's real. It's true and not alternative fact. It's a transcript of 45's comments from ten years ago, and even as I acknowledge my role as contributor to ugliness, it bears repeating because we're all responsible on some level. I still can't believe that 45 now represents all of us on the world stage.



Let's move on.

On Saturday night, I attended the first meeting of our local Indivisible group. We're called Active Empathy, and we're intent on active resistance to not just 45 but also to the extreme right Republicans in power whose agenda doesn't represent us or -- in some cases -- the majority of people in this country, in addition to its undoing progress to protect our environment and ensure equal access to our healthcare and threatening our first amendment rights. I'd have to make this a Faulknerian sentence if I kept typing everything that's under threat, but our intentions include flipping the legislature with methodical action. The group that attended the first meeting was diverse in age, race, religion, sex and sexuality, a mini-Los Angeles. We introduced ourselves and told the others what issues we were most interested or concerned. The range was wide. Some tears were shed and some expressed anger. Many attendees are originally from the "flyover" states and perfectly aware that not everyone who lives in those states condones some of the more egregious behavior of 45 or the conservative platform. Many expressed the need to be self-aware, to at least acknowledge our part in further dividing the country with our anger and sometimes condescension. Others had more of a screw that attitude, believing it is going to take the adoption of Tea Party tactics to be most effective. Here's the beautiful logo created by one of the founders of the group. Active Empathy is the name that's above the following:



We're not a moderate group, which brings me to the other thing I wanted to write about, and that's the personal war I have going on in my tiny little mother mind.™ I generally use the tiny little mother mind™ expression to describe the relationship between me and the Powers That Be in Neurologyland, how over decades I've learned just how hegemony works. The analogy has some use here, too. What does it mean to be educated? What does it mean to be an elitist? When did the open derision of intellect become acceptable? What does it mean to be moderate? Why is moderation a virtue? Why is moving to the center a goal? Is that a construct or something truly admirable? Are there certain principles that should not be compromised? What convictions do I have that are immoveable? I don't have the answers. I have a tiny little mother mind™ and some gut instincts, though, that have served me well and that I have to constantly be vigilant to honoring. To help me with this, I've been reading Hannah Arendt's The Origins of Totalitarianism, and it's startling and fairly easy to draw parallels to what's going on today. I'm reminded of my instincts and of honoring them, how difficult it is to do so when I also have to deal with emotions, with a patriarchal culture and values that are more authoritarian than inclusive. There's a good discussion of Arendt's work here, including this choice passage:

“What convinces masses are not facts, and not even invented facts, but only the consistency of the system of which they are presumably part . . . Totalitarian propaganda thrives on this escape from reality into fiction . . . [and] can outrageously insult common sense only where common sense has lost its validity.”

It's exhausting, isn't it?




Let's move on.

I saw the extraordinary documentary about James Baldwin called I am not your Negro. Everyone should watch it and the documentary 13. They're both antidotes to the superficial bullshit that reigns in this country. It rained off and on all weekend here in southern California. Everything is green, so green. I've been reading Ann Patchett's novel Commonwealth and love it. I told a good friend that I haven't been able to get into a novel in a long time, that I remain half in and half out, that that was worrying me because reading novels has been really the only constant in my life (that's NOT hyperbole). I'm in Patchett's story -- totally in. The man I love brought me pink roses, and the boys I love showed me how to take pictures with my new iPhone so that the background is blurred out. How wonderful is that! Here's a picture of the roses using this clever technique and one of the cinnamon bread I baked. The boys I loved showed me the scratch and sniff technique on the phone, too. Just kidding. That IS hyperbole.




Reader, what did you do this weekend?

Friday, February 17, 2017

The Struggle

After rain

Trump's grand and vulgar self-absorption is inviting all of us to examine our own selfishness. His ignorance calls us to attend to our own blind spots. The fears that he stokes and the isolation he promotes goad us to be braver, more generous.
James S. Gordon, founder of The Center for Mind-Body Medicine 

The whipsaw of anger and sitting in stillness.

A long time ago Sophie began to seize and I began to resist.

A long time ago I placed the baby in the middle of the bed while she screamed and got into the shower, turned on the water and crouched there under it. The word drown covers both the sound and my life, in those moments.

A long time ago I also rocked my baby and recited a mantra as she screamed for hours and hours. I've written that sentence, juggling those words, over and over for the last two decades. Sometimes I write more than twenty years. A while back I wrote over ten years ago. 

While the baby screamed I recited the words of Thich Naht Hanh over and over, aloud.  Breathing in I calm myself, breathing out I smile.

When I feel most angry I sit with it feeling its flood. Lately, I go to water, swim back and forth, fluid and cutting.

Anger both cuts out the noise and is the noise. It is both distraction and diversion and the means to focus and sharpen.

Sophie and her seizures prepared me for resistance and for anger.

The peace that came was not something to work on, that I worked on but was, rather, imposed.

The story of the angel and Jacob, wrestling on a hill.



A little East of Jordan (145)

A little East of Jordan, 
Evangelists record, 
A Gymnast and an Angel 
Did wrestle long and hard – 

Till morning touching mountain – 
And Jacob, waxing strong, 
The Angel begged permission 
To Breakfast – to return! 

Not so, said cunning Jacob! 
"I will not let thee go 
Except thou bless me" – Stranger! 
The which acceded to – 

Light swung the silver fleeces 
"Peniel" Hills beyond, 
And the bewildered Gymnast 
Found he had worsted God!

Emily Dickinson


Gaugin, The Vision After the Sermon (Jacob wrestling with the Angel), 1888


Monday, February 13, 2017

Heartbreak Open



It's heartbreak that those of us who experience it rarely share, such is the pain. Our children with severe intellectual disabilities, while valued as part of their family and school communities (and often not even there) have few independent friendships and little to no opportunities for social interaction other than the times arranged with -- yes -- those people who are actually paid to be companions or to put on social programs and acitivities. There's a scene in the Caregifted documentary Undersung in which I ne of the caregivers, Ramona, says very quietly that she is resigned to always having to pay someone to interact with her autistic son. It's a moment in the film where I sort of stop and sit still, paralyzed yet intensely aware that I am really only made of bits and pieces, shattered.

Despite loving aides at school, a kick-ass teacher and group of students she has practically grown up with, Sophie has few friends outside of her family and the two women who have helped care for her over the years. Ok. She has none. I have largely given up on outside people, including friends and family, to take that kind of interest in her. Although bitterness occasionally rears up, I'm more inclined to understanding and accepting it, choosing to confide in my peers, other mothers and fathers who are long-time caregivers. I am pretty much resigned, like Ramona, to arrange and pay for Sophie to have companionship. She will be aging out of the school system this spring, and the nagging worry of what might come next is just that -- a nagging worry. I foresee a huge transition in my mind and soul, even if I do find a good day program for Sophie. It will be the next great twisted milestone in a long line of them, the chain of them, the tail of the dragon.

Swish

We live, I think,  in what I sense is the break of the heart, not out of choice but of necessity, and it's not the disability that we mourn, the differences of our children. They are complete and whole even in their brokenness. If disability is a construct, our heartbreak is for those who would persist in looking away, whether it's the culture or the persons within it -- you and you and me -- leaving our children isolated, looked on at best with kindness and at worst not at all.

During these tumultuous times, when it seems that the whole sane world is struggling to WOKE, I've found a new friend, a woman who is intent on her own young daughters being woke as well. I've known her for a long time but really only as an acquaintance, so when she asked me whether her daughters could possibly spend time with Sophie, I confess I rolled my eyes inwardly. I might have put bitterness aside, but I can still be cynical, and whether that's a defense mechanism or not, it's hard and well-earned. I did not expect anything to come of it. My friend's girls are eleven and fifteen years old, committed ballerinas and breathtakingly beautiful. They have clear eyes and when they first came over, they spoke openly to me, asking questions and observing Sophie in her room. They were sort of unbelieveably magnificent, if I can say that.

I'll say this, too: They have been spending time with Sophie, have come to our house on Sunday morning and spent time with her.

Yesterday, Sophie had a big seizure in the early hours before dawn. She had an amazing run of more than a month without any to speak of, so I guess it was time. Resignation. Acceptance. The girls had planned to come over, but I texted my new friend to tell her that it might not be a good time. This new friend is brash and funny and persistent, to say the least. She literally insisted that her daughter could sit with Sophie as she rested and give me a break. I took a breath and gave in. Circe came over, walked into Sophie's room where she lay recovering from the seizure, went to the bookshelf and pulled down James and the Giant Peach. She sat down on the floor next to the bed and began reading to her. She read more than fourteen chapters in a quiet voice, adapted to Sophie sitting up by sitting next to her and continued to read.

 I only poked my head in every few minutes to check on them and eventually stepped into the shower where I cried a bit, my tears diluted by the water streaming down my face and over my breasts, under which my heart with its scars, that break where we live, became a channel for them, a pathway down, a pool, an ocean under my feet.

Thursday, February 9, 2017

Pretty Girl




I have no idea.

I have no ideas.

Pretty girl.

Pretty smart girl.

I'm thinking about a lifetime of relax, calm down, I'll pay you $1,000 to be quiet, You're such an exaggerator, Your head's always been in the clouds, Get your head out of your poetry/ass, Book sense isn't everything, relax, calm down, you're crazy, you're basically a pretty girl with some smarts.

Elizabeth Warren in the hallway outside the hallowed chamber, still reading.



The Republikkkans have prioritized voter suppression, and they've specifically targeted black people and other disadvantaged groups. The Supreme Court, with a majority of conservative justices, gutted the Voting Rights Act and literally opened the gates to restrictions and obstacles that some could argue were the main contributors to how we got here. Here.

How we got here. 

The most intelligent members of even my high school class are arguing with, literally, the least intelligent. The least intelligent are gloating, smug, rich, KKKristians. Gun-lovers. Brain, they hissed back in the eighth grade when I walked down the hallway with my stack of honors. Brain as derision.

Make Amerikkka great again. 

The appointment of the racist Sessions and the billionaire Kkkristian DeVos took the breath out of me. Not only because he's an old-school racist but because of his stance on medical marijuana. He's not into it. Not only because she's intent on increasing God's Kingdom but also because she is purposefully ignorant and disdainful of the laws protecting the rights of the learning and otherwise disabled.  She's not into it. Will I have to stockpile Sophie's medicine? At least Sophie ages out of the public school system this May. It gives me little comfort to be living in the greatest state in Amerikkka, because I know just how long many of my comrades in the disability/seizure/epilepsy world have been waiting and hoping for an easement of marijuana laws. They're not getting it now. Their children will suffer, perhaps die. It gives me little comfort to be living in the greatest state in Amerikkka because I know just how dependent many of my comrades in the disability/learning disabled world are, how young their children are, how they are thriving in schools responsible to the law that will, perhaps, not be enforced.

Even as I type, I'm getting my breath back.

I'm going to the pool now, will dive in and begin the steady strokes. I'll hold my breath, blow out through my nose and twist my head to the side. I won't gulp in air but rather train myself to keep breathing, steady, propulsive. Forward. Breathing for myself and breathing for others.



















#resist

Monday, February 6, 2017

WOKE AF and What the Neurologist Says




Today was our quarterly visit with The Neurologist.  This is generally something I prepare for by downing three Bloody Marys and a chaser of frozen vodka (see the other 4,321,896 posts I've written on the subject. They generally begin with a photo of the waiting room wall with the CONQUER and TRIUMPH sign over the list of wealthy donors), but I'm not going to complain today because -- you know -- I'm grateful.

We've got health insurance (for now) and The Neurologist is very helpful as far as getting those pesky pre-authorizations that Anthem demands every month for the drug that Sophie has been on for EIGHT YEARS. When the Fresh-faced Pharmacist of the Month rings me up at the CVS, he inevitably asks me do you realize how expensive this medication is? And I say I do but tell me again how much it costs. And the young man says, Today it's $435. And I say that should be covered by insurance. And he says, Well, it needs a pre-authorization. And I say, Again?We've been getting this medication for eight years! And he says, It's a controlled substance, ma'am. And I say, Yes, I know that but I'm trying to grift the system here and keep the drug wars going by having benzo parties with all my friends. And he says, May I see your ID? Reader, I'll leave it up to you to discern which of those were alternative facts and which were the real thing, but I have digressed from my point that The Neurologist always helps me with The System and for that I am exceedingly grateful.

I'm also not going to complain about today's visit with The Neurologist because Sophie has been seizure free for more than three weeks. Yes. We have found the sweet spot, I guess, at least for now. I figure I can cover any jinxes by readily acknowledging that we might have a downturn at any moment. Downturns and rebounds are equal opportunity dictators.

I posted this picture of Sophie on Facebook this afternoon, and my feed literally exploded. Everyone is, of course, thrilled that Sophie is doing so well and many asked why? Here's why, I think, at least for now: Sophie was overmedicated on Onfi (the benzo that needs the pre-authorization) and the CBD. We know that CBD can jack up levels of Onfi, so when Dr. Bonni (Sophie's cannabis doctor who recently published a great book all about cannabis medicine that you can order on Amazon) suggested we decrease either the Onfi or the CBD to see if she responded, I naturally chose to decrease the Onfi. Faithful readers might remember that we jacked up the Onfi back in the fall when we spent six hideous days in the hospital ripping off the Vimpat, and I guess after a month or so her levels of Onfi were enough to put her in what I thought was an overall DECLINE. I was scared, ya'll and also resigned to -- well -- you know.

To make a long story short, I took away some Onfi and do you know that Sophie perked up? She more than perked up, actually. She is WOKE. She is rowdy. She is ready to fight with the rest of us against those who would stand in our way (we're talking about you Drumpf, and you Sessions and you Price and you DeVos and all of you who condone and support them and their retro policies that will hurt her and tens of thousands like her). She is not having seizures. She takes Onfi twice a day, CBD twice a day and THC once a day.

I'm here to blow your mind


Speaking of being WOKE, what did The Neurologist say? She was thrilled that Sophie is doing well and took care of my pre-authorization needs, but she also had a few choice words to say about the current clusterf**k that is our country. She was walking out the door, scribbling on a pad, but she said, I will NOT be here if the ACA is repealed and we go back to the Dark Ages before it when I had patients begging me not to write diagnoses in their charts. I think she kept muttering that all the way down the hall before she disappeared around the corner.



WOKE AF
#resist

Sunday, February 5, 2017

Corporeal Politics


photograph by S. Herman


On Friday afternoon I joined a group of women from the Catholic community in my neighborhood and visited the Islamic Center of Los Angeles in our neighborhood for prayer. I confess that I was reluctant to do so for selfish reasons having to do with organized religion, but after brooding about it for a day or two, I realized that my discomfort was just that -- discomfort bred by ego. I was struck, especially, by one of the "twenty lessons from the twentieth century" that I posted the other day.


10. Practice corporeal politics. Power wants your body softening in your chair and your emotions dissipating on the screen. Get outside. Put your body in unfamiliar places with unfamiliar people. Make new friends and march with them.

Corporeal politics.

The mosque was filled, crowded with members there practicing their religion and with people from the community of diverse faiths, including a contingent of Latino men. We were there to pray with our Muslim brothers and sisters and to show solidarity with the Muslim people of our community and world, particularly in the face of the Trump administration's oppression of civil liberties.Those of us who chose to do so wore appropriate head coverings and went into the room for women, while others sat in the vestibule. The imam led all of us in prayer and then gave a beautiful talk about inclusivity, emphasizing that we are all God's people and intent on peace everywhere in the world. Afterward, the women of the mosque invited us into the kindergarten room to share in treats.
It was a profound experience for me, underscoring my conviction that we must continue this uncomfortable and difficult work to resist those who would divide this country and go against every ideal that we have ever professed.
Here's a wonderful and prescient poem by the great suffragette, Ella Wheeler Wilcox, who wrote it in 1914. I listened to and read it this morning at the Brainpickings website. You can read more about Ella's exhortation against silence here. Listen to the poem, too.


PROTEST
To sin by silence, when we should protest,
Makes cowards out of men. The human race
Has climbed on protest. Had no voice been raised
Against injustice, ignorance, and lust,
The inquisition yet would serve the law,
And guillotines decide our least disputes.
The few who dare, must speak and speak again
To right the wrongs of many. Speech, thank God,
No vested power in this great day and land
Can gag or throttle. Press and voice may cry
Loud disapproval of existing ills;
May criticize oppression and condemn
The lawlessness of wealth-protecting laws
That let the children and child-bearers toil
To purchase ease for idle millionaires.
Therefore I do protest against the boast
Of independence in this mighty land.
Call no chain strong, which holds one rusted link.
Call no land free, that holds one fettered slave.
Until the manacled slim wrists of babes
Are loosed to toss in childish sport and glee,
Until the mother bears no burden, save
The precious one beneath her heart, until
God’s soil is rescued from the clutch of greed
And given back to labor, let no man
Call this the land of freedom.
Ella Cox Wheeler (1914)




#resist

Friday, February 3, 2017

The Backs of the Disabled and Those of Us Who Shirk Work*



This is the beginning of my Shirking Work days
March 8, 1996


So last night I was doing exactly what I shouldn't have been doing, which was scrolling through emails and Facebook. I was already in an agitated state over the National Prayer Breakfast and some un-bloggable things, but when I read the following article from the Congressional Budget Office (CBO), I thought I might combust.

I'm going to cut and paste the entire thing in red because it deserves the coverage, especially to those of you who put us in this position and who might be reading here:

Eliminate Supplemental Security Income Benefits for Disabled Children




Billions of Dollars20172018201920202021202220232024202520262017-20212017-2026
Change in Mandatory Outlays0-10-11-11-11-12-12-11-13-13-42-104
Change in Discretionary Spending0-1-1-1-1-1-1-1-1-1-4-9
This option would take effect in October 2017.
The Supplemental Security Income (SSI) program provides cash assistance to people who are disabled, aged, or both and who have low income and few assets. The Congressional Budget Office estimates that 15 percent of SSI recipients in 2016 will be disabled children under age 18, receiving an average monthly benefit of $664. Those children must have marked and severe functional limitations and usually must live in a household with low income and few assets.
This option would eliminate SSI benefits for disabled children. CBO estimates that making that change would reduce mandatory spending by $104 billion through 2026. Also, because annual discretionary appropriations cover SSI’s administrative costs, this option would generate $9 billion in discretionary savings over the same period so long as total appropriations were adjusted accordingly.
One rationale for this option is that providing SSI benefits to children may discourage their parents from working. Unlike Temporary Assistance for Needy Families, a welfare program that aims to help families achieve self-sufficiency, SSI imposes no work requirements on parents and does not explicitly limit how long they may receive benefits as long as the child remains medically and financially eligible. Furthermore, SSI benefits decrease by 50 cents for each additional dollar parents earn above a certain threshold, depending on household size and other factors. (For example, in calendar year 2016, for a single parent with one child who is disabled and with no other income, SSI benefits are generally reduced after the parent earns more than $1,551 per month.) Those program traits create a disincentive for parents to increase work and thereby boost earnings.
Another rationale for this option is that, rather than provide a cash benefit to parents without ensuring that they spend the money on their disabled children, policymakers could choose to support those children in other ways. For example, states could receive grants to make an integrated suite of educational, medical, and social services available to disabled children and their families. To the extent that funds that would have been used to provide SSI benefits for children were instead used for a new program or to increase the resources of other existing programs, federal savings from this option would be correspondingly reduced.
A rationale against this option is that this program serves a disadvantaged group. SSI is the only federal income support program geared toward families with disabled children, and SSI benefits reduce child poverty rates. Families with disabled children are typically more susceptible to economic hardship than other families because of both direct and indirect costs associated with children’s disabilities. (Direct costs can include additional out-of-pocket health care expenses, spending on adaptive equipment, and behavioral and educational services. Indirect costs for the parents of disabled children can include lost productivity and negative health effects.)

I'm calling out not just Drumpflanders, but Republicans, because literally the second you can, you go for the jugular. I don't give a flying foo-foo about reaching across the aisle or even trying to understand why the sick, the disabled and the most vulnerable bear the brunt of your political machinations, even as your precious corporations are allowed to poison our air and water, exploit workers, avoid taxes, make war and billions and billions of dollars in profits for an ever-shrinking group of people. 

Am I enraged? I am.

First of all, the rationale for "this option" is that providing SSI benefits to children may discourage their parents from working. Sophie gets a bit more than $640 a month in SSI benefits. This proposal would eliminate that benefit. As you know, I have been shirking work for more than two decades and would have to go out and get a real job. 

Even the rationale "against" that option is ridiculously simplistic, stripping everything but economics, the bottom line and the commodification of our children.

The Nazis came first for the disabled. Did you know that? This isn't rhetoric.

Let's say this doesn't happen. What you've done, Drumpflanders and Republicans, is inject the most intense panic and worry, on top of everything else that we have to deal with, into our bodies. Sit with that. You are indecent, immoral human beings if you support this.








*This is a clarification. I am grateful for the SSI money that Sophie receives every single month and use it to pay for unreimbursed medicine, therapies, clothing and incidentals for her. We receive that amount, thanks to a federal waiver that has deemed her care "institutional" -- meaning were I not to care for her at home, she would be institutionalized. In addition to SSI, Sophie qualifies for IHSS or In Home Supportive Services. I am paid minimum wage to care for her at home. I have no idea whether these funds will also go by the wayside, along with the Affordable Care Act. In addition to the entitlement programs, my parents help me by sending me money to help with childcare. They are in a position to do so, and I am beyond grateful and at once cognizant of how privileged I am. I manage to get freelance writing and editing work, as well as have my book salon and other entrepreneurial things. So, what I'm saying, is that I am panicked about the Repubs removing all these safety nets, and I am a fortunate person, at least for now. I worry about the long term future, though, and how I will continue to do what I do. It would be unethical and immoral of me not to use my talents and ability to articulate these things and to advocate for the tens of thousands of families less fortunate than mine. So that's what I'll continue to do. 


Thursday, February 2, 2017

Be a Patriot

Women's March, Los Angeles
2017


This was written by a prominent professor of history and given to me by a trusted professional. It's heavy and intense -- perhaps it will scare the shit out of you, but I think it's necessary, and I want to type it out here so that it's embedded in my own mind.



Twenty Lessons from the Twentieth Century

Our future freedom depends on our present actions.

Americans are no wiser than the Europeans who saw democracy yield to fascism, Nazism or communism. Our one advantage is that we might learn from their experience. Now is a good time to do so. Here are twenty lessons from the twentieth century, adapted to the circumstances of today.

1.   Do not obey in advance. Much of the power of authoritarianism is freely given. In times like these, individuals think ahead about what a more repressive government will want, and then start to do it without being asked. You've already done this, haven't you? Stop. Anticipatory obedience teaches authorities what is possible and accelerates unfreedom.

2.   Defend an institution. Follow the courts or the media, or a court or a newspaper. Do not speak of "our institutions" unless you are making them yours by acting on their behalf. Institutions don't protect themselves. They do down like dominoes unless each is defended from the beginning.

3.   Recall professional ethics. When the leaders of state set a negative example, professional commitments to just practice become much more important. It is hard to break a rule-of-law state without lawyers, and it is hard to have show trials without judges.

4.   When listening to politicians, distinguish certain words. Look out for the expansive use of "terrorism" and "extremism." Be alive to the fatal notions of "exception" and "emergency." Be angry about the treacherous use of patriotic vocabulary.

5.   Be calm when the unthinkable arrives. When the terrorist attack comes, remember that all authoritarians at all times either await or plan such events in order to consolidate power. Think of the Reichstag fire. The sudden disaster that requires the end of the balance of power, the end of opposition parties, and so on, is the oldest trick in the Hitlerian book. Don't fall for it.

6.   Be kind to our language. Avoid pronouncing the phrases everyone else does. Think up your own way of speaking, even if only to convey that thing you think everyone is saying. (Don't use the internet before bed. Charge your gadgets away from your bedroom, and read.) What to read? Perhaps "The Power of the Powerless" by Vaclav Havel, "1984" by George Orwell, "The Captive Mind" by Czeslaw Milosz, "The Rebel," by Albert Camus, "The Origins of Totalitarianism" by Hannah Arendt, or "Nothing is True and Everything is Possible" by Peter Pomerantsev.

7.   Stand out. Someone has to. It is easy, in words and deeds, to follow along. It can feel strange to do or say something different. But without that unease, there is no freedom. And the moment you set an example, the spell of the status quo is broken, and others will follow.

8.   Believe in truth. To abandon facts is to abandon freedom. If nothing is true, then no one can criticize power, because there is no basis upon which to do so. If nothing is true, then all is spectacle. The biggest wallet pays for the most blinding lights.

9.   Investigate. Figure things out for yourself. Spend more time with long articles. Subsidize investigative journalism by subscribing to print media. Realize that some of what is on your screen is there to harm you. Learn about sites that investigate foreign propaganda pushes.

10.  Practice corporeal politics. Powers wants your body softening in your chair and your emotions dissipating on the screen. Get outside. Put your body in unfamiliar places with unfamiliar people. Make new friends and march with them.

11.  Make eye contact and small talk. This is not just polite. It is a way to stay in touch with your surroundings, break down unnecessary social barriers, and come to understand whom you should and should not trust. If we enter a culture of denunciation, you will want to know the psychological landscape of your daily life.

12.  Take responsibility for the face of the world. Notice the swastikas and the other signs of hate. Do not look away and do not get used to them. Remove them yourself and set an example for others to do so.

13.  Hinder the one-party state. The parties that took over states were once something else. They exploited an historical moment to make political life impossible for their rivals. Vote in local and state elections while you can.

14.  Give regularly to good causes, if you can. Pick a charity and set up autopay. Then you will know that you have made a free choice that is supporting civil society helping others doing something good.

15.  Establish a private life. Nastier rulers will use what they know about you to push you around. Scrub your computer of malware. Remember that email is skywriting. Consider using alternative forms of the internet, or simply using it less. Have personal exchanges in person. For the same reason, resolve any legal trouble. Authoritarianism works as a blackmail sate, looking for the hook on which to hang you. Try not to have too many hooks.

16.  Learn from others in other countries. Keep up your friendships abroad, or make new friends abroad. The present difficulties here are an element of a general trend. And no country is going to find a solution by itself. Make sure you and your family have passports.

17.  Watch out for the paramilitaries. When the men with guns who have always claimed to be against the system start wearing uniforms and marching around with torches and pictures of a Leader, the end is nigh. When the pro-Leader paramilitary and the official police and military intermingle, the game is over.

18.  Be reflective if you must be armed. If you carry a weapon in public service, God bless you and keep you. But know that evils of the past involved policemen and soldiers finding themselves, one day, doing irregular things. Be ready to say no. (If you do not know what this means, contact the United States Holocaust Memorial Museum and ask about training in professional ethics.)

19.  Be as courageous as you can. If none of us is prepared to die for freedom, then all of us will die in unfreedom.

20.  Be a patriot. The incoming president is not. Set a good example of what America means for the generations to come. They will need it.

Timothy Snyder, Housum Professor of History, Yale University




#RESIST

Wednesday, February 1, 2017

Please Answer All Questions In the Name of Patriotism and the Flag

Portal


Questionnaire

How much poison are you willing
to eat for the success of the free
market and global trade? Please
name your preferred poisons.

For the sake of goodness, how much
evil are you willing to do?
Fill in the following blanks
with the names of your favorite
evils and acts of hatred.

What sacrifices are you prepared
to make for culture and civilization?
Please list the monuments, shrines,
and works of art you would
most willingly destroy

In the name of patriotism and
the flag, how much of our beloved
land are you willing to desecrate?
List in the following spaces
the mountains, rivers, towns, farms
you could most readily do without.

State briefly the ideas, ideals, or hopes,
the energy sources, the kinds of security;
for which you would kill a child.
Name, please, the children whom
you would be willing to kill.


Wendell Berry





Take heart. Stay strong. 

Read this.

Be in the 3.5%.

#RESIST

Tuesday, January 31, 2017

Venus and the Moon




Why is the sight of a moon sliver and a bright star next to it so beautiful? I want it to mean something. So much coming at us, and I feel diminished even as I wax, as powerful and dumb as the moon.

Your silhouette crossing the lawn and away from me.

The urge to wrest from the gut when the words form in the brain.





In an ever-changing, incomprehensible world the masses had reached the point where they would, at the same time, believe everything and nothing, think that everything was possible and that nothing was true. ... Mass propaganda discovered that its audience was ready at all times to believe the worst, no matter how absurd, and did not particularly object to being deceived because it held every statement to be a lie anyhow. The totalitarian mass leaders based their propaganda on the correct psychological assumption that, under such conditions, one could make people believe the most fantastic statements one day, and trust that if the next day they were given irrefutable proof of their falsehood, they would take refuge in cynicism; instead of deserting the leaders who had lied to them, they would protest that they had known all along that the statement was a lie and would admire the leaders for their superior tactical cleverness.

Hannah Arendt, The Origins of Totalitarianism, 1951

Monday, January 30, 2017

Soul Repair in a Cruel Era


photo by Carl Jackson


On Friday night, poet and MacArthur Genius, Heather McHugh, graced a room full of my friends who came to watch a screening of her and Adam Larsen's documentary UNDERSUNG. The documentary is a love story unlike any you might have seen, following four families as they "explore the limits of human need and in the process show us something limitless."

Long-time readers of this blog know that several years ago I was fortunate to receive a one-week, all-expense paid respite in Victoria, Canada. Caregifted is a non-profit foundation founded by Heather shortly after she received her Genius award. Family caregivers who have been caring for their disabled relative for at least ten years are eligible to receive the one-week respite grants.  The week quite literally changed my life, transforming my perceptions of identity and what my future might be. I felt grounded, at peace and truly rested for the first time in nearly two decades. I felt a deep and abiding sense of possibility that holds true even today, three years since I lay on a bed by myself in a little apartment in Canada, took long walks on a log-strewn beach, wandered the small town and took long, luxurious baths while the rain pattered on the ceiling.

One of my best friends, Cara, opened her gorgeous home to all of us on Friday evening. Here I am in a room full of people that I love, trying to do justice to what Heather and Caregifted gave me that summer:

photo by Carl Jackson



Heather is not just an angel and philanthropist but a poet. When we planned the evening, she wrote me:

We could think of these gatherings as soul repair in a cruel era. Something we can do, as artists and philanthropists, to re-secure communities of kindness. I see these gatherings as just another way (like the marches) of re-securing our premises in principled kindness, over and against mockeries and manhandlings and one-upsmanships.

Given the constant drumbeat of hideous news and our mounting fears, particularly for those of us in the disability community (our disabled children and young adults are among the most vulnerable in the country), Heather's message was truly soul-repairing. She read two powerful poems and then led us down a labyrinthine path, telling us how caregivers have inspired and motivated her to action. I can honestly say that I still don't understand how this woman who is not a mother herself has accomplished something incredibly profound in understanding exactly what our experiences are -- both the joys and the sorrows -- and reaching out to help us in a way that has eluded even our closest friends and relatives. She is one of the great humanitarians, I think, of our time.

On Friday night, Heather truly secured our premises in principled kindness.

I find myself, again, deeply in debt to both Heather and the many friends who came out to support Caregifted.

Thank you, beautiful people!






Make a donation to Caregifted, if you're so inclined!

The documentary can be streamed on Amazon now, and I highly recommend that you watch it. Here's a clip:









#RESIST

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