Wednesday, December 7, 2016

Tiny Little Mother Mind™ Part One

Tiny Little Mother Mind™, under wraps

I've got two things to say, and they're both reflections from my tiny little mother mind.™

I'm going to break them up into two posts. After reading this, stay tuned for the second one because it has to do with MEDICAL CANNABIS.

The first has to do with the wonderful commentator Van Jones, whom you might be very familiar with as his pre and post-election insights have been sustaining to many progressives. Today I read a good long interview with him in Rolling Stone. It's called Van Jones: Only a 'Love Army' Will Conquer Trump. Here's the thing. I love Van Jones and I love what he's saying. His words have particular relevance to me because I am guilty of spewing my disgust at the current political situation and certainly lumping all those who voted for Drumpf together. I am going to try, try, try to reach out and be more understanding of the varied reasons people voted for this man, however difficult that might be. I want very much to be a part of the 'love army.'

Where my tiny little mother mind™ gets miffed, though, is from this passage:

How do you do that? We're going to do national teach-ins starting very soon – once a week, every week, standing up for the most vulnerable people: Muslims, the DREAMers, Jewish people, women, trans people, black protestors. And once a week, give the whole country a chance to show a whole lotta love – both to demonstrate and deepen a solidarity with those groups, all under one hashtag. #LoveArmy is an opportunity to reassert at a values level.

What are we missing in that paragraph? Anyone? Who's missing? What did my tiny little mother mind™ catch that Van Jones did not, nor Rolling Stone?

THE MOST VULNERABLE PEOPLE in this country includes those with disabilities, particularly those with cognitive disabilities. They are routinely left out of the conversation, as we see in Van Jones' otherwise beautiful, inclusive words,  and while I know this isn't intentional, it's deeply symbolic.

What's coming round the bend with the Drumpf administration and his Band of Billionaires, as well as the usual folks like Eddie Munster et al, is striking fear into every single caregiver of a disabled person that I know and in disabled persons themselves. ALL the systems of care that we rely on, including health, health insurance, scientific research, education, social services, respite, etc. are at risk. These systems of care -- these issues -- help to assert and maintain the dignity and well-being of disabled persons. DISABILITY RIGHTS ARE CIVIL RIGHTS.

I'm not sure what to do about it but keep talking and talking and writing and writing. Will you help me? Will you share this? Will you speak to Van Jones and Rolling Stone and other media outlets that routinely neglect to include the rights of the disabled as worthy? Again, I do not think it's intentional but rather that the disabled have perhaps the quietest voices, if at all, in our country. They are not literally "worth" anything at all -- monetarily. Often they do not have a vote or a voice. Their caregivers are generally exhausted. They have few champions.

This tiny little mother mind™ is begging you to help.

#LoveArmy



Monday, December 5, 2016

The Fall of America


I know most of you who visit here probably feel the same way about the cast of freaks that Drumpf is assembling as his Cabinet. I don't know about ya'll, but I fall hard to sleep each night after reading a bit more of a novel (reading is my only constant and even in times of extreme stress, I can read a damn novel), and when I wake up I'm generally in a positive mood (this, even though I am generally also wakened by Sophie having a seizure) as long as it's daylight. These days, though, since the Buffoon was elected by the Buffoonizens, it takes about one minute and sometimes less, for me to remember. At first it's a vague thread of something, what is it again, and then it's Oh, yeah and then it's confirmed by some godawful new story of dark-houred tweets with a hostile foreign country or a thin-skinned response to being mocked on a television show or the appointment of a confirmed racist as the chief lawyer or a climate change denier in charge of the environment or a creationist in charge of education. Throw in the bottle blondes and the Stepford wife and daughter, and then the nightmare that is the day begins, again.

Anyhoo.

Let's change the subject for a moment.





I've never been very good at building things or dealing with the spatial. I get lost, literally, every single time I park my car in a parking lot, and at least once or twice a day if I'm traveling anywhere other than, let's say, ten square miles.

When I took an aptitude test back in the dark ages of the last millennium, when I was still in my teens, I scored off the charts for a test called Ideaphoria, where you had to write as much as you could about anything in five or so minutes. Granted, I was probably doing something similar to here which is allowing my brain to just meander and wander and muse and peruse, my fingers quick at the keys. I am made of words, I guess. Back then, when I was asked to put together in my mind geometric figures using as guide these one-dimensional drawings with dotted lines for folds -- well -- I could not do even one. I stared at those things with my tiny little mother mind™ to be and just watched them, floating in the universe. What fresh hell was it?

I remember these things periodically, as well as how bad I am at sports, when I watch my sons. Where did these creatures come from? I think, more often than not. I used to call Henry the Lego Genius because of his uncanny ability to put together complex sets with only the most cursory check of the directions. Since Oliver is severely dyslexic, he never looks at signs or reads directions, much less books, yet is able to navigate his way through any city after being in it for half an hour. I'm not kidding. He's been doing this since he was about two years old. It'd be creepy if it weren't perfect for someone like me who turns left when I'm supposed to go right, every time. 
Anyhoo.

I saw one of those Christmas trees made from books the other day on the internets and decided that I wanted to do it. I thought it might cheer me up from the Drumpfian nightmare and at the very least distract me. I gathered about 100 books of various sizes and thicknesses and piled them on the dining room floor. Then I watched the video about five hundred times and made about three hundred attempts to construct even the first layer. I'm actually pretty patient, even when I get lost or become very confused.

HENRY and OLIVER! I screamed.

They were back in their room playing some godforsaken video game with incredible skill, I'm sure, but they obliged me and came into the dining room. After expressing incredulity and scorn for what I was doing, their general default, they decided to humor me. Henry got down on the floor and began building the tree without even looking at the internets, while his brother criticized him and cracked jokes.




Whenever I attempted to place a book on the growing tree, I was admonished for not doing it right. What is wrong with you? Oliver asked me, more than once, and I admonished him for being disrespectful of his old mama.

Save the pretty Penguins for the top! I cried at some point and directed Henry to place the beloved novels in front and the books about cars and magical places that I'll never visit to the back.

When Henry got to placing The Idiot on the pile, he expressed disbelief that this was really the title of a book. I expressed disbelief that he'd never heard of Dostoyevsky despite being in school for the last fifteen years, including a semester of Advanced Placement Literature. Not to mention that I carried him inside of my uterus for 42 weeks, after which he was pulled from me, nursed for fourteen weeks from my body and then was cared for every single day for the next eighteen years. He rolled his eyes at me and then said, Look, Oliver, it's a book about you.



Good thing he's so good-looking.




I might not be able to find my way to my car or even your house, and I'm also having a hard time figuring out how to navigate the fact that despite grabbing women's pussies (that might be the first time I've typed out that word) and mocking a disabled person, Drumpf is the leader of the free world. God, I've always hated that expression.

I sure have read a lot of books, though, and I remember every single one of them. I realize that that doesn't make one whit of difference in the world at this point except for in a tiny subset of the general population. It feels somewhat familiar as I can remember that being smart or intellectual was entirely uncool during middle school at the hoity toity prep school I attended in Atlanta, Georgia. It was much better to be pretty and rich than to have your crooked nose with rose-tinted glasses perched on them, buried in Great Expectations. If I close my eyes, I can be right back there, and now I don't even have to close my eyes. I'm pretty certain that most of those classmates, with the exception of a few, are thrilled to finally have a president who won't come for their guns or rip babies out of their wives' wombs. That we have a racist for Attorney General, a climate change denier for the environment, an orthopedic surgeon for Health and Human Services who hates the Affordable Care Act and loves the private insurance industry, a billionaire who doesn't give a shit about public schools for education and now, a neurosurgeon to handle housing and urban development -- well -- what more is there to say? If there's any human I distrust more than a neurosurgeon, it's an evangelical neurosurgeon. As I told my friend C who was lamenting the latest white cop getting off after shooting an unarmed black man in the back, it's not going to get better, and it's probably going to get worse. I suggested that the racist attorney general could instruct his law enforcement to sprinkle crack on felled dead black men, after which the evangelical neurosurgeon could remove their brains in some deserted housing project that he's emptied and give them to the orthopedic health and human services dude to run research on white exceptionalism for Drumpf and his chief strategist.

Shit. Where was I?

At one point, after checking my phone for news and feeling the lurch, again, of nightmare, I grabbed my yellowed old copy of Allen Ginsberg's The Fall of America before it got buried under the pretty Penguin classics. I made sure that Alan Paton's Cry the Beloved Country and Walt Whitman's Leaves of Grass were front and center. Ginsberg went on the top. I can almost hear the cries of the death of Christmas, can't you?




Sunday, December 4, 2016

Secular Sunday

Huntington Beach, CA


Prayer During a Time My Son is Having Seizures


Finally I just leaned on the door-frame, a
woman without belief, praying
please don't let anything happen to him.
Don't let him stand there and his gold
jaw lock while he watches the burning
mountain falling slowly through his mind and
no word comes to him.
Don't let him stand there like a tree with its
green branch lopped off and
falling slowly away, the tiny
amber cones already darkening,
don't let him fall like the lip of a 
cliff coming off, a heavy tuft
stuck with white berry blossoms
sliding down the raw bluff of his life,
don't let him stand on the curb watching his
mind get hit by a blue car
over and over, there is nothing he can do about it.
Don't hurt him, I cry out,
don't take his thoughts away as a 
kid will rip toys from another kids' hands,
don't go up to his small dazzling
brain in spangles on the high wire
and push it off. There is no net.
Don't leave him in a wheelchair drooling into
cereal, not knowing the dark
holes are raisins. And yet if that's the
only way I can have him, I want to
have him, to look deep into his face and
see just the avenues of light,
empty and spacious, to put on his bib
as I once did, and spoon brown sugar
into the river of his life.
I'll change his dark radiant diapers, I'll
scrape the blue mold that collects in the creases of his elbows,
I will sit with him in his room for the rest of my days,
I will have him on any terms.

Sharon Olds

Thursday, December 1, 2016

Being Woke



another way to see: it's sort of like the dollar bill has been turned inside out, and now people who couldn't see it before can see it plainly: America is built on the slaughter of Native Americans, the theft of land, the bodies of African Americans as well as the modern slave labor of brown people, and the reproductive use-value of women as objects. it always has been, but we developed sly cover stories. our present tense isn't "new," but it is very stark and loud and the cover story is gone. capitalism is as bare as it's ever going to be. take a good look. decide.
Lidia Yuknavitch

I slept for so long.

A long time ago I went on a trip to Mississippi, a few trips to Mississippi, where my grandmother was raised in the Delta. I won't tell you where, but I think there were dark things happening there, always. I think a sign of privilege, of how I slept. My eyelids fluttered once on a trip there when some children whipped a dog in the grass, under the trees and away from the house. They weren't my first cousins but they were related in some way. A girl with scabby knees and straw-colored hair, pale blue eyes, a switch in her hand. The dog cowered. I held my little sister's hand. My eyelids fluttered when someone there called me a little nigger, my summer body nut brown.  Other. There were guns and awards for livestock, a family reunion, a distant cousin sitting in a low lawn chair, plastic-striped, watching a talent show. Someone told a joke about him being in the clan with a K and everyone laughed and my eyes flew open. Is he in the Klan? I think I asked my mother, but I think a sign of privilege. Her lips drawn straight. My back straighter.

Squirm.

How sticky it was to mow the lawn as a young girl in Georgia without a bag, the sharp points of cut grass on sweaty skin. The heat. The stain. I grew to hate the south. You should never hate anyone, a boy told me once, except the Devil. I think it was his grandmother who said that. I think a sign of privilege. In church the priest droned and I conjured saints, tiny black dots dancing in front of my fluttering eyes, right before I closed them and fainted.

I was always uninterested in American history. Unpatriotic. 

I took two years of Chinese language in college so that I might learn to read the ancient poetry in the original. Bless my heart. I studied Buddhism right about then. And all the Russians. Being a consumer of books is still a consumer. You aren't a Buddhist, are you? I think my mother asked. I think a sign of privilege.  So many books. The Grand Inquisitor. We thought you were a communist. 

The privilege of eyes fluttering open and then closed.

Ten years later.

Sophie woke me up. After the shot, her mouth an O, a cry, a breath we breathed together. Her vulnerability. We define ourselves by words, and she had none, would never have any. Such hard work to shape them, words,  for her for others, to make a person. Dignity. Her, cloistered.  Disability. The disabled. Dis Abled.

Where I rambled and what was imposed. Equanimity.

Being awake. Being constantly woke.


Tuesday, November 29, 2016

Scared Sh*tless and Resistant




Just when I think I've had enough, there's something more. Yesterday it was reading that Drumpf (#notmypresident) had appointed arch-conservative Georgia congressman Tom Price to be his Health and Human Services secretary. These appointments -- this vile human being and Jim Sessions, the arch-conservative racist senator from Alabama who will be the chief law enforcer, and the billionaire woman who will be in charge of wrecking public education, render me scared shitless in a profoundly personal way. I'm afraid that there might literally be nothing positive to be salvaged over the next four years and possibly longer, that any progress we've made during the last eight years will be utterly squandered and that the lives of the most vulnerable people in our country -- the disabled, in particular -- will be damanged irrevocably. Both Price and Sessions are vehemently opposed to medical marijuana -- have fought in their respective states against it, have made ignorant statements about it and will now be in the position to reverse a lot of the gains that have been made during the last couple of years, even. Price despises the Affordable Care Act and wants to turn even our right to healthcare into a commodity -- something to bid for, to shop for. Sessions has made disparaging comments, on the record, about public education, particularly special education, leading many to believe that he will work hard NOT to defend the American Disabilities Act and the Individuals with Disabilities Act. He called the inclusion of disabled students (particularly those with behavioral challenges related to their disability) "the single most irritating problem for teachers throughout American today."  He has blamed those disabled kids getting accomodations for the "decline of civility" in this country.Do you think, as Attorney General, that he will have the best interests of my daughter and millions like her in mind?

These people will gut the ADA and they will gut IDEA. They will take away women's reproductive freedom, and they will do it in the service of their fucked up god. They will stall the descheduling of marijuana and go after even those states that have legalized it. They will deny people of color and religious minorities their constitutional rights.

Do I sound hysterical? Do I sound like a sore loser or a whiner, as cousins of mine stated on their Facebook page two days after the election? Do I sound angry?

I'll tell you something. I'm almost hysterical. I'm not a sore loser, but I'm losing. I'm not whining. I'm shouting through words. And yes, I'm angry. I'm going to resist being scared shitless, though, because this is my country, too. A country is only as strong and great as its attitude toward the most vulnerable of its population. Right now, America is poised to be led by a racist misogynist who was voted in by a minority of selfish, uneducated and ignorant citizens . Whether it's him or the craven Republicans pulling the strings, he's surrounding himself with a bunch of privileged sycophants.



For the past two weeks I have woken in dread for what has been wrought on us personally and as a culture and nation. People whom I love have brought this on us, and I just can't shake it.

Yes, this is a rant. I'm waking in dread, but I'm moving forward in resistance.







Today is Giving Tuesday. You can help these organizations that help the disabled. We will need it more than ever --

1. Jewish LA Special Needs Trust

#Giving Tuesday is finally here! As a new nonprofit, we are excited to join this global day of helping and caring for others in need. Remember, all gifts to JLA Trust will be used to help our Outreach and Education activities, and allow us to assist more people with disabilities. You can ensure that a veteran living on government benefits is able to enjoy a higher quality of life and that a single mother can plan ahead with confidence for her child with disabilities  by clicking here! Your dollars will help us help others.



TODAY REALLY MATTERS. Gates Foundation doubles your "Giving Tuesday" donation. That means for every $100 we get $200 today only-- and bless you, if you happen to be able to donate $1000, then the $2000 we get takes care of travel and food for an entire caregiver getaway! I donate upscale hotel lodgings for all caregiftees-- can you help with travel and food? Why do I feel so strongly (as my mother did before me) that the woman's touch is so much needed in this world? And there are some amazing caregiving men, too-- we need to reach a hand out to them. THANK YOU ALL WHO HELP.


We improve lives through Research, Education, and Advocacy. By funding and conducting Research, we learn more about cannabis and its effects while legitimizing the therapy.Education empowers consumers to select the best products for their individual needs, and informs healthcare professionals about options for their patients. Through Advocacy, we spread the truth about cannabis and expand access to those in need. 

Sunday, November 27, 2016

Sunday Morning Poetry with the Night Before Last Sunset


Sunset, Henry and Oliver
Pelican Cove, Rancho Palos Verdes


The Bright Day

Earth, earth!
day, this bright day
again—once more
showers of dry spruce gold,
the poppy flopped broad open and delicate
from its pod—once more,
all this again: I've had many
days here with these stones and leaves:
like the sky I've taken on a color
and am still:
the grief of leaves,
summer worms, huge blackant
queens bulging
from weatherboarding, all that
will pass
away from me that I will pass into,
none of the grief
cuts less now than ever—only I
have learned the
sky, the day sky, the blue
obliteration of radiance:
the night sky,
pregnant, lively,
tumultuous, vast—the grief
again in a higher scale
of leaves and poppies:
space, space—
and a grief of things:
motion: standing still.

A.R. Ammons

Friday, November 25, 2016

Status Update

Seattle, WA


I'm super glad that Thanksgiving is over. I dislike the contrivance of it, that forced gratitude thing. I've never really liked Thanksgiving, except for the sides, to tell you the truth. Speaking of, you know what side I'm on. I am here this morning on the left side of the country and ever so grateful to be here. My political views are opposite to those of some of my closest relatives, and I was filled with dread about the night. There've been awkward Thanksgivings before, but never like this one. I told one of my friends that I was taking it on as some sort of karmic thing. I was intent on being, if not Zen, than at least a tad Stepford-like. I figured that would be at least in keeping with the Drumpf's bride. Last night I posted on Facebook that I would drink a glass of red wine for every Trump supporter at my Thanksgiving table. I posted this picture of myself along with it:



I'm not a big drinker so I anticipated the night being epic. Here's what happened. Everyone behaved. No one mentioned anything at all about Drumpf or his band of crazies. It was ok. That was a bottle of Montepulciano, and it was delicious. I drank one small glass of the wine, served the food dutifully and cleaned up as dutifully. Then I lay down on the bed next to Sophie in a sort of comatose state with a splitting headache and eventually went to sleep.

I guess we're going to have to get on with it. Keep resisting in our own way.

Here are my divine children for whom I'd do anything.


Sunday, November 20, 2016

Love is a Verb, Part 345



Crescent Lake, Washington


I slipped away from sunny California and traveled first by plane to Seattle and then by ferry and car to  Port Angeles in stormy but beautiful Washington for a long weekend. I joined my friend, fellow writer and caregiver Jeneva Burroughs Stone, and writer/caregiver Leslie Haynes at the invitation of Heather McHugh, the MacArthur prize-winning poet who founded the organization Caregifted. Many of you who've been reading this blog for years might remember that I received a week of respite several years ago, the first time I'd been away for more than a few days in more than nineteen years. Caregifted provides respite weeks, free of charge, to family caregivers of the disabled who have been doing the caregiving for at least ten years.

That week in Victoria is documented on my blog, and it quite literally changed my life. I grew to love Heather and what she is doing for those of us with these unique, often arduous but also deeply fulfilling lives. Most, if not all of us are exhausted, and while we might have learned some profound perspective, the relentless nature of caregiving for a severely disabled son, daughter or spouse is something that few people -- even close friends and family -- ever understand. I'd say that Heather McHugh is a person who does understand this -- inexplicably, as she has no children of her own. She is a poet and an angel -- and I don't say that lightly.

There is no other organization that I know of that does what she does, and while it's a small one, the impact of Caregifted is deep and intense. Heather invited us to her beloved Pacific Northwest  to have a kind of creative pow-wow to figure out how to keep the organization going. Given the disastrous election, many of us who work with and care for our disabled children and young adults are justifiably terrified at what might happen. We are certain that any services we might receive could very well be cut or drastically reduced. We are concerned about the rights of our children and all people with disabilities and about our ability to fight successfully for them. Disability rights are civil rights, and they will be threatened. There has been real progress under the Obama administration in the areas of education law, the Affordable Care Act and other issues. Many people don't realize that, but there is still much work to be done. The cognitively disabled, in particular, are overlooked, as are the severely disabled, and our lives as caregivers are seriously impacted by a culture and government that doesn't acknowledge or help us.

Caregifted is an extraordinary and very unique organization. Since the election, many of us are mobilizing through concrete action to help organizations that are helping the disenfranchised. I am making monthly donations to Planned Parenthood and to the ACLU. I plan on registering as a Muslim should the Trump administration make registration a priority, and I am ready and willing to do what it takes to resist the mockery of a presidency, the band of mostly white men who surround him and the legion of their supporters. I know that many of you are doing the same, supporting organizations that support people of color, the LGBTQ community, climate change initiatives, Muslim and other religious minorities, as well as women. I urge you to add the disabled to your list. Caregifted is decidedly NOT a political organization, but it is an extraordinary and very unique one. I would love if you'd make a contribution, however small, to Caregifted. Helping caregivers helps the disabled. Rights for the disabled are civil rights. Trust me on that one.

Here's their website. Donate if you can. Stay tuned to hear about screenings of the wonderful documentary Undersung. We are a small group, but you are a mighty one. Share it and tell your friends and family about it.

Thank you!



Wednesday, November 16, 2016

Happy NaFaCaGiMo, folks! Day 16 with a Brilliant Guest Post

Nichole Montanez incredible photo project: The Face of Cannabis



So, I haven't been posting about NaFaCaGiMo since the sh**tstorm we called an election happened last week. After peeling myself off the floor, though, I'm galvanized like never before to RESIST. My friend and fellow caregiver, Jeneva Burroughs Stone, posted a lengthy thing on Facebook today that is particularly relevant to not just the sh**storm, but also to caregiving and disability rights. I hope that you'll read it and share it far and wide. 

If there are any Trump lurkers around these parts, please read it because it's about people like SOPHIE whom you profess to love and about the millions of people like her. 

Many of us have been working in the so-called trenches for decades on issues of social justice. Last night I attended the Realm of Caring benefit that honored some of those people -- people who have been and continue to fight for our children with epilepsy and other significant health disorders so that they have access to cannabis medicine. The event raised money to help children and families who can't afford the medicine get it. We have and continue to fight against very entrenched ignorant beliefs and a medical/industrial complex that is tyrannical. We are motivated because our children's lives are on the line. What happens when you start advocating for your own child in any system at all, you realize quite quickly that there are LEGIONS of people that need help and that it is your responsibility to do what you can to help them. That's what I'm doing. It's really hard work, and you have to be prepared to argue and fight and make enemies. As the great MLK said, "The arc of the moral universe is long, but it bends toward justice."

Jeneva's incredible new memoir, Monster is available for pre-order. Go do that and then come back and read her powerful words: Now here's Jeneva's powerful post:



I haven't said much about the election recently, nor whatever it is I will do to resist an incoming administration I feel to be wrong, insofar as the attitudes it has projected and the personnel it has appointed thus far.
I've been standing up to injustice in a very individual, almost lonely way for over 18 years: fighting the education system, the medical establishment, the state. I haven't been shy about saying that I have to fight Democratic politics as often as Republican politics--that's the nature of disability bias. It comes from both sides, and it's extremely difficult for able-bodied people to break out of the disability = tragedy mindset and move toward thinking that disability = another way of living. And equally difficult to resist placing persons with disabilities within capitalist values (what are they worth, anyway, to society?) when that question is not asked with such disconcerting openness in major news outlets as compared to other disenfranchised groups.
I've determined that my own energy will be sucked into my continuing struggles for Robert's equality and independence, and I hope that I am able to frame these broadly enough that my efforts will benefit more persons than just him. This fight will sometimes put me at odds with many of you, but that is to be expected. Insofar as your objectives propose true and not symbolic inclusion of persons with disabilities, I will do whatever I can to help, but my own energies have to be primarily with PWDs, as we/they are the first to be cast overboard in a storm.
I do have advice for whoever wants it about confronting and resisting authority, although many of you have been activists for some time and probably don't need it.
First of all, remember that demonstrations and open statements of resistance are certainly steps in the right direction; however, these serve the purposes of mobilization. They accomplish little in and of themselves by themselves. You have to put in the work to organize: getting permits, creating lists of supporters, setting agendas that involve more than making calls to congress. As many of you have discovered, each office has multiple phone lines and the opposition will find ways to avoid you.
Second, and following upon the first, you must listen, both to the opposition and to the variety of opinions within your own group. You don't need to listen to the opposition out of empathy (although bridge-building can be important): you need to listen to grasp their positions and potential strategies. If you don't know what these are, you cannot outflank and out-maneuver them. You also need to understand the personalities and motivations of the opposition leaders in order to locate what you can use to your advantage. These are the strategies I use the most in approaching the wall of opposition I face on behalf of Robert.
The Democratic Party has, to my mind, erred in refusing to listen to its internal critics, and, thereby, passed on forming a broader coalition. Avoid the mansplaining, overbearing tactics common to many organizers--the "I know best, I've done this longer than you," kind of thinking, be they men or women.
Third, you must be willing to perform acts of civil disobedience. That's where I am now with Robert's needs: trying to figure out what I am willing to do, what consequences I am willing to accept and what consequences are too dangerous for my son. No is a powerful word, but it must be used with care. Consequences are real and you must accept they will be real.
Fourth, you must take the energy you are generating now and move even beyond organization toward the massive project of selecting and running individuals with goals akin to your own for public office. This is a great deal of work, and two years to the mid-term isn't long. And both President Obama and Senator Sanders have made good points that getting your points of view into the political decision making process is essential. Voting is good; getting more candidates in the race is better.
Fifth, and I say this to both liberals and conservatives (and progressives): vandalism, threats and violence will do little for your cause in the long run, other than to give others evidence to repudiate you. For example, the threats issued toward my family by Maryland's Department of Nursing Services has done nothing more than stiffen my resolve.
Sixth, always be nice to the army of administrative persons who help provide access to key persons. Be nice always to those who help you consistently because it's the right thing to do. But "being nice" to authority doesn't work much. As a woman, I had a hard time with this, letting go of it, but I recognized early on that this would just be taken as a sign of acquiescence by, for example, the school system. They won't like you, but you will get your message across. Switch up your messengers when you need to--good cop/bad cop. That's what Roger and I do when we realize the same thing said by a male voice will trigger a different response.
Seventh, learn the law, learn the loopholes, and don't rely on rhetoric to get you to your objectives. That rallies support for your side, but is easy for the opposition to ignore or downplay. As I have discovered, I can shout about injustice all day long, but until I develop reasons for why these are injustices and put those pieces into play, I get nowhere.
Eighth, you will have conflict with some of your friends. I have, too. Some have told me I am too emotional, too prone to rant. I see what I do as exemplifying injustice and pointing out what's wrong. This metaphor isn't quite what I would like, but my earth science teacher once told me, "stick to your guns," when I, in uncertainty, changed my answer on an oral exam to the wrong one because I was looking for some sign from him that my original instinct was the correct one.
I hope this hasn't been patronizing, as I have not meant it that way, and I'm sure it duplicates what some of you already know. See you out there.

Monday, November 14, 2016

Crushed Progress




pro·gres·sive
prəˈɡresiv/
adjective
adjective: progressive
  1. 1.
    happening or developing gradually or in stages; proceeding step by step.
    "a progressive decline in popularity"
    synonyms:continuing, continuous, increasing, growing, developing, ongoing, accelerating,escalating; More
    • (of a disease or ailment) increasing in severity or extent.
      "progressive liver failure"
    • (of taxation or a tax) increasing as a proportion of the sum taxed as that sum increases.
      "steeply progressive income taxes"
    • (of a card game or dance) involving a series of sections for which participants successively change place or relative position.
    • archaic
      engaging in or constituting forward motion.
  2. 2.
    (of a group, person, or idea) favoring or implementing social reform or new, liberal ideas.
    "a relatively progressive governor"




I bought a very expensive pair of progressive lenses less than a month ago. I have worn glasses for near-sightedness since I was seven years old, and over the last five or so years I've grown increasingly short-sighted as well. My eyes are near-sighted enough that I literally can't see -- say -- an alarm clock from my pillow or my face in the mirror, not to mention five feet in front of me. Outside a radius of perhaps five inches, everything is a blur. I have worn contact lenses for as long as I can remember, but for the last year or so, when I took them out, I couldn't read in bed either unless I placed a pair of reading glasses over my regular glasses. It wasn't a good look, but really only the boys saw me, and I just didn't feel like getting adjusted to progressive ones.

Anyhoo.

I bought this great pair of progressive lenses and have worn them for about a month and have never seen better. I also have a pair of prescription sunglasses, so this morning I put them on, hung the progressive lenses on my shirt and wheeled Sophie's chair out to the car. It's a bit of a production to fold up her chair and heave it into the back of the car, a daily task that you'd think would give me cut arms (waiting on them) but has, instead, given me a strong back and an even saltier mouth. Cursing helps to mitigate the labor and distract me. Sophie doesn't mind, and I imagine her silence, if broken, would be filled with curses. I dropped her off and then went on my grocery store rounds, drove back home and carried the groceries into the house. I took off my sunglasses and reached into my purse for the progressive lenses and they were, of course, not there. They weren't anywhere in the house, nor were they in my car, and it didn't so much dawn on me but actually hit me with a jolt that they might have fallen off two hours before when I put the wheelchair in the car. I walked back outside and to the street and saw them, crushed and broken into pieces. I felt sort of stunned and then sort of amused, enough to take a photo. I picked up the glasses and the pieces from the curb, brought them inside and burst into tears.

The metaphor of crushed progressive lenses doesn't escape me.











Staying Awake






What is the meaning of life? That was all -- a simple question: one that tended to close in on one with years. The great revelation had never come. The great revelation perhaps never did come. Instead there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one. This, that, and the other.

Virginia Woolf, in To the Lighthouse
published May, 1927

Sunday, November 13, 2016

Taking a Bullet



That's Sophie sitting in her wheelchair, gazing at trees. She's finally stopped moaning and humming. I'm not sure why she's been moaning and humming. Is it the impending full moon? Is she constipated? Is something hurting? Has she absorbed the extreme tension in the universe post-election? Has she absorbed the extreme tension in my family due to the election, via me? Is it moaning? Is it discomfort?

She is not having seizures, praise cannabis, and that would include THC. So, yeah, you obdurate fools who don't think THC is medicinal.

She is otherwise dramatically improved from a month ago. It seems hard to believe, yet I am determined to feel gratitude for this respite. That's why despair must not be indulged when things go wrong. Things never stay still. Still, the moaning and vocalizations are constant enough that they put my already extremely edgy self just at the tip of -- well -- falling off. I told the boys as I folded my laundry that when we lived in a tiny New York City apartment and she was a baby and screamed 3/4s of the day due to discomfort from the drugs that she was on, I would have to resort to putting her into her crib or in the middle of the bed, after which I would go into the shower, turn it on full blast and crouch there on the floor, my head in my hands, the tears swirling with the water down the drain. Oliver asked, If that was your life, why in the world did you have us? I told him that never, at any time, did I regret having a baby and that Sophie was a rock star even then and that he and Henry were the reason why I had them. The boys smiled as they ate the pizza that I'd ordered -- things are so hairy around here that I'm not even making lunch these days, much less dinner.

That paints a rosy portrait of two boys, their moaning sister and tense mother folding laundry while eating pizza. It was hardly that as our lunch discussion became a heated and argumentative one as we shared stories of racist incidents that we know about, that affect those we know and love, already, not even at the end of the first week of post-America. We live in one of the largest and most multi-cultural cities in the world. I've got teenaged sons whose best friends include bi-racial kids, black kids, Hispanic, Muslim and Asian kids. Their sister is disabled. They know what discrimination is (the people who use the word retard and then argue that it's just a word, the fact that disabled people were institutionalized in the past, that they face discrimination both subtle and overt everywhere in this country, etc. etc. etc.), but I don't think they have ever seen the kind of overt shit that's going on now, and it enrages and scares them. One of their cousins wept openly about an incident on a high school bus where white kids shouted at black kids to go to the back of the bus. A young black student at UCLA whom we know stopped her car to help a white bicyclist that had fallen off his bike, but he called her a nigger, told her that we don't need your help anymore. We have family members that we literally can't talk to right now, and that's so disturbing and stressful that I can't even write about it.

The boys' first impulse is to fight back, to use violence, and while I know this is talk that comes from teenage bravado and testosterone and feelings of helplessness (and the reason why, I'm sure, young males have been historically exploited to fight wars), I am doing here what I call parenting on the fly. We talk about being alert to increased violence and racism in our community and to being prepared should something arise. We talked about our white privilege. We talked about the importance of non-violence (O.K. I talked about it and they rolled their eyes), and I told them that if it comes down to it --- and they asked me this question -- I would take a bullet but not shoot one.

Yeah, lunch on a Sunday afternoon.

Never have I felt as galvanized or depressed.

I claim to be a master of equanimity, of the ability to hold two opposing or contradictory thoughts or feelings at once, but that's not happening right now. Or maybe it is as I balance fierceness, righteousness, anger and at least a desire to be compassionate.

For every the America we know is dead (usually said, written about or cried by a white person), there is a much more relevant there was never an America.

I'm not sure the rift in families can be repaired.

Saturday, November 12, 2016

Saturday Poetry



Since the election, I wake up every morning in dread.




Poem

I lived in the first century of world wars.
Most mornings I would be more or less
insane,
The newspapers would arrive with their
careless stories,
The news would pour out of various
devices
Interrupted by attempts to sell products
to the unseen.
I would call my friends on other devices;
They would be more or less mad for
similar reasons.
Slowly I would get to pen and paper,
Make my poems for others unseen and
unborn.
In the day I would be reminded of those
men and women,
Brave, setting up signals across vast
distances,
Considering a nameless way of living, of
almost unimagined values.
As the lights darkened, as the lights of
night brightened,
We would try to imagine them, try to find
each other,
To construct peace, to make love, to
reconcile
Waking with sleeping, ourselves with each
other,
Ourselves with ourselves. We would try by
any means
To reach the limits of ourselves, to reach
beyond ourselves,
To let go the means, to wake.


I lived in the first century of these wars.

Muriel Rukeyser
from The Speed of Darkness, 1968
posted on Poetry Foundation

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