Tuesday, January 31, 2012

How We Do It: Part VIII in a series

I was in my room, working on the computer and simultaneously talking to Oliver, who had just gotten out of the shower and was begging me to look up the video of the song Cherokee Nation. He had been singing the song incessantly since he'd gotten home from school, and while it made me laugh -- do you remember that song? -- it was also becoming tiresome.Cher - o - kee Nation! Cher-o - kee Pride! he shouted and then we laughed together at Paul Revere and the Raiders, their mustaches and long hair, what Oliver called hippies and in the olden days, so when he paused in the shouting of the song, we heard a steady banging coming from Sophie's room. I jumped up from my desk and Oliver froze as I ran out of the room. Sophie had fallen and was having a seizure, her head banging on the door over and over. Oliver and I realized this simultaneously, and as I tried to open the door, he yelled for Henry, who came running down the hall and as I moved out of the way, he placed his hands on the top of the door (cut-off halfway so that we can see Sophie in her room but not completely shut her out) and leaped over the door and over Sophie who lay on the floor, bent and seizing, her head banging on the door. He knelt down and drew her into his lap and held her there until the jerking stopped and he could drag her away from the door and we could open it and go inside. When I picked her up (thank you strong back) and put her on her bed, both boys left the room, and I sat there on the bed thinking of knights in shining armor and warrior Indians, the olden days.

Monday, January 30, 2012

Sophie on the Trampoline

January Rose

Less Being More

It started when he was a young man
and went to Italy. He climbed mountains,
wanting to be a poet. But he was troubled
by what Dorothy Wordsworth wrote in
her journal about William having worn
himself out searching all day to find
a simile for a nightingale. It seemed
a long way from the tug of passion.
He ended up staying in pensione
where the old women would take up
the children in the middle of the night
to rent the room, carrying them warm
and clinging to the mothers, the babies
making a mewing sound. He began hunting
for the second rate. The insignificant
ruins, the negligible museums, the back-
country villages with only one pizzeria
and two small bars. The unimproved.

Jack Gilbert, Refusing Heaven

Sunday, January 29, 2012

Poetry and politics intersect

Philoctetes, by James Barry

Human beings suffer,
They torture one another,
They get hurt and get hard.
No poem or play or song
Can fully right a wrong
Inflicted and endured.

The innocent in gaols
Beat on their bars together.
A hunger-striker's father
Stands in the graveyard dumb.
The police widow in veils
Faints at the funeral home.

History says, Don't hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.

So hope for a great sea-change
On the far side of revenge.
Believe that a further shore
Is reachable from here.
Believe in miracles
And cures and healing wells.

Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there's fire on the mountain
Or lightning and storm
And a god speaks from the sky

That means someone is hearing
The outcry and the birth-cry
Of new life at its term.
It means once in a lifetime
That justice can rise up
And hope and history rhyme.

from The Cure at Troy by Seamus Heaney

The Cure at Troy is Heaney's version of Sophocles' play Philoctetes, a Greek hero who was left wounded by the Greeks on an island where he was forgotten about until the final stage of the Siege of Troy. Philoctetes owns an invincible bow that the Greeks need to win the Trojan War, so they are forced to return to the island and ask for Philoctetes's support.

The back of my copy of the book says this about Heaney's work: Heaney's reading of Philoctetes is particularly responsive to the Greek playwright's understanding of the relations between public and private morality. "The Cure at Troy" dramatizes the conflict between personal integrity and political expediency, and it further explores ways in which the victims of injustice can become as devoted to the contemplation of their wounds as the perpetrators are to the justifications of their system.

I've read this part of this poem over and over during the last twenty years, and each time it speaks to me in a different way. During my first reading, the third and fourth stanzas leaped up and out, resonating with me as I began my arduous journey with Sophie -- Believe in miracles/ and cures and healing wells -- then those perfectly beautiful rhymed Call miracle self-healing:/The utter, self-revealing/Double-take of feeling. 

What's so fantastic about poetry, and this piece especially, is how it speaks to both one's private experience and to the larger culture. I am sure that we read into the words, taking what we want or wish or understand -- at least in our own very personal lives --  but I also think the poetry speaks strongly to our current political climate, doesn't it? Wouldn't it be amazing if our political leaders would stop talking about family values, money, American exceptionalism and all that bullshit and, rather, listen to a poet like Heaney who is able to articulate what it means to be human, to be working towards a common good, to be rhyming hope and history and justice?

(Yeah, I know. My head is in the clouds and I'm flying my poetry freak flag over here.)

Saturday, January 28, 2012

My New Old Blog

Side of the Road

The Husband and I went to hear Lucinda Williams last night at Royce Hall on the UCLA campus. Her craggy, strong voice sounded exactly the same as it had years before, and we were both stunned and thrilled when she opened with Side of the Road, a more obscure one that happens to be our favorite. We had just wondered what she might sing when she walkd out and began singing it. Afterward, The Husband said I could really just leave now.

You wait in the car on the side of the road
Lemme go and stand awhile, I wanna know you're there but I wanna be alone
If only for a minute or two
I wanna see what it feels like to be without you
I wanna know the touch of my own skin
Against the sun, against the wind

I walked out in a field, the grass was high, it brushed against my legs
I just stood and looked out at the open space and a farmhouse out a ways
And I wondered about the people who lived in it
And I wondered if they were happy and content
Were there children and a man and a wife?
Did she love him and take her hair down at night?

If I stray away too far from you, don't go and try to find me
It doesn't mean I don't love you, it doesn't mean I won't come back and
stay beside you
It only means I need a little time
To follow that unbroken line
To a place where the wild things grow
To a place where I used to always go

La la la, la la la, la la la, la la la
La la la la, la la la, la la la, la la la
If only for a minute or two
I wanna see what it feels like to be without you
I wanna know the touch of my own skin
Against the sun, against the wind

Friday, January 27, 2012

Surfing Friday - Things I Like

Moms are Solutionary Revolutionaries

Piano Music

What I Mean by Fake Work
What I Mean by Cheerful Pretending

What do you like? I'd love a discussion about the last two, if you're so inclined. Oh, and I've started my old food blog up, again.  Here's the link: How To Eat

Why I love Irish blessings (and poetry)


On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.
And when your eyes
freeze behind
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.
When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.
May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.

John O'Donohue

Thursday, January 26, 2012

Pink Sheets

The worst one can do in Beverly Hills traffic is to let down your window and simultaneously scream at yet another BMW that has nearly side-swiped you in its urgency to get somewhere, where? and shake a fist and perhaps reach in to the glove compartment for the gun that you have stored there in case, and the best one can do is close one's eyes for a moment, but only a moment, and remember the bell from the app on the meditation timer that you recently installed on your phone and that worked quite beautifully that morning, the first time you used it. Bong, it sounds, deep in your recesses and you still remember it, feel it, from hours before when you woke up, still dark out, your foot had ripped a tear out of the sheet and you'd only noticed it the day before, but this morning it was a hole, a huge hole, the softened edges frayed, the shiny mattress underneath exposed. Bong the bell went when twenty minutes were up and you opened your eyes, not realizing that the sound would bury itself just enough to make coffee and lunches and kiss good-bye but still be available hours later as your car wound up the endless driveway of a parking garage unable to park for the behemoths in compact spaces. A voice on the radio would declare that one candidate, (the one with white hair and many wives, the one who blows hard and long)  would say of the other candidate, (the one who is ramrod straight with five sons and a fortune) that he is out of touch with ordinary Americans. And you would wonder what an ordinary American really is because surely that candidate is not ordinary with his two ex-wives and his open marriage and his new-found catholicism and his wife with the booya! eyes.  Bong the bell goes, in your dark belly and up and out of your mouth as you turn the candidate's voice off and think to yourself that today I will buy myself rosewater linen sheets.

** guns in glove compartments are a figment of your imagination


Highland Avenue, heading north

Wednesday, January 25, 2012

Love for this world,

of which I am a small part:

The Great Bell Chant (The End of Suffering) from R Smittenaar on Vimeo.

Turn your volume up and watch full screen!

Perhaps an explanation for Sophie's increased seizures this week?

The sun is bombarding Earth with radiation from the biggest solar storm in more than six years with more to come from the fast-moving eruption.
The solar flare occurred at about 11 p.m. EST Sunday and will hit Earth with three different effects at three different times. The biggest issue is radiation, according to the National Oceanic and Atmospheric Administration's Space Weather Prediction Center in Colorado.
-- Huffington Post

Tuesday, January 24, 2012

The only thing to do after fifth grade math, giant seizures and a tomato soup recipe that is abysmal

(otherwise, it was a fine day)

Love letters to friends

A sheltered life can be a daring life as well. For all serious
daring starts from within.
Eudora Welty

We ate shrimp and grits at a small round table, and we drank a lot of wine. We drank so much wine that I drew stick figures on a napkin proving that I wasn't a prude, and you leaned so far back in your chair (you might have been laughing) that it tipped over. We might have been screaming with laughter, as far as I know, the rest of the people in the restaurant receding, their mouths open, silent. Years later, I picked you up from a Greyhound bus station in Nashville, Tennessee, trailing an enormous suitcase. You fixed my air-conditioner and swept out my apartment, and when I came home from my shift, I lay on the bed and you on a sleeping bag beside me and we talked in the darkness, and we talked through the years on the phone and in letters and now over polenta and eggs and no one makes me laugh harder.

Monday, January 23, 2012

During and after the rain

We made cookies and ate them for both breakfast and lunch. We watched True Grit, and I was taken by surprise given all the gun-shooting, western stuff. Can we talk about this movie? I know I'm late to the game, but was that the most incredible and incredibly weird and wonderful stilted and formal writing and speech you've ever heard in a movie? I loved it. Jeff Bridges? I love him. That girl? I loved her. Matt Damon? I loved him and his silly Texas ways. Iris Dement singing at the end? I loved it. That last shot? Gorgeous.

Snow Day

Amden, Switzerland, 2007

I'm surprising the boys this morning and not waking them up for school. It's raining here in Los Angeles and since we never have snow days, I'm calling one. We need a mental health day -- I think chocolate chip cookie-making is in order, perhaps a viewing of True Grit, and pajamas all day.

And maybe we'll listen to this:

Sunday, January 22, 2012

Two Small Stones

Polk Place, 1935, Wilson library in background: William Waters, IV

We stood on the steps of the old library at UNC-Chapel Hill, the fall of my sophomore year. We were on the top step, having emerged from the stacks blinking, blinded in the day's light. My backpack was heavy on my back. I was wearing a Mexican-inspired red ruffled skirt with desert boots, an ensemble that I imagined bohemian in otherwise preppy 1982. He put a hand on my shoulder, and I felt his dry palm through the thin cotton of my shirt. The same bumps on my skin rose at his touch as do when I step into sunlight. The bare skin receives warmth and then, shocked, feels a chill, the goosebumps, then the warmth spreads to the tips of the fingers. A sun sneeze. His hand lay there, on my shoulder, so that I couldn't move. I heard his voice, low, in my ear, a whisper. If we lived in Cro-Magnon times, he said, you would never have survived. I would be the wild cat that ate you up. The steps under my feet were hard, wide and shallow. I was stuck under his hand and couldn't open my mouth. I felt his fingers on my throat, cool and dry. Blinded, I saw spots, little black dots and at the bottom of the steps, the world, bare and primitive, stripped.

Small Stone 21 and 22

Things I Learned This Week

netsuke, LACMA

  • about netsuke: I'm reading a riveting memoir called The Hare with Amber Eyes, written by Edmund De Waal. Mr. De Waal is a ceramicist and writes beautifully about how the inheritance of a collection of 264 tiny Japanese wood and ivory carvings, called netsuke, led him to discover the history of his family, the Ephrussis, a 19th century banking dynasty. When my bookstore friend Liz recommended this book, I confess that I had no inclination to read it. Netsuke? The Japanese? Proust? Vienna during the Second World War? These are not things I'm even remotely interested in. Well, I'm glad that I did because I can hardly put it down.

  • about how amazing this blog community is: The people who read my blog and leave comments are astounding. The whole conflagration that was my and others' exchange with The Girl Who Espouses To Be a Bioethics Expert burned all the brighter as the comments poured in. I'd urge you to read those comments -- I'm certain you'll learn as much as I did. Thank you. This photo reminds me a bit of what it feels like to be part of such a vocal, strong and confident community:

  • that my son Oliver responds really well to lists, even those whose number one item is Say Good Morning. He not only did that every day this past week, but he made his bed, fed the dog on his designated day, picked up his mess in the bathroom after his shower each night and did his homework with a minimum of complaint. Who knew that a black Sharpie and a piece of computer paper would trump yelling?

  • the inventions of the Chinese (paper, gunpowder, and I can't remember what else) as described in my son Henry's seventh grade paper. Amazing what one forgets over the years --

  • that Anne Carson the poet is very weird and very wonderful. I heard her last night at the Masonic Lodge in the Hollywood Forever cemetery. In lieu of describing the whole scene, I'll just say that we parked our car in the graveyard, noted the graves of Issac and Anna, both born in the late 1800s and both dead within a year of each other in the 1950s, and walked down a long, very dark road to the Lodge that was filled with very young and glamorous literary types, an odd sight in Los Angeles and somehow heartening. As for the cemetery, Johnny Ramone is buried there, along with Jayne Mansfield and Bugsy Siegel. The list is long and again, it's a strange and wonderful place.

Saturday, January 21, 2012


It began to rain in the early hours last night, and I woke abruptly at the drip, drip, drip from the metal awning over the steps that lie at my back door. I sat up, completely awake, got out of bed and grabbed the flashlight that I keep by the side of my bed in case there's an earthquake. I put on my clogs and opened the door, walked outside through the drips and to the timer for the sprinkler system. I shut it off, thinking about possums, whether they stay away when it's raining and where they stay if they do. I also thought about the water saved and the money saved by my vigilance in turning it off and then rolled my eyes at myself for thinking these thoughts at four am. When I went inside, I forgot to dash through the drip and was soaked so I pulled off my pajama top and put on another and got back into bed wondering how it was possible to wake so suddenly and think about so many trivial things. It sort of scared me and sort of disgusted me, too. So much for remembering convoluted dreams or feeling hazy and sexy and stretching contentedly. I wonder whether all the stress and thinking works to dull down the subconscious. I think of the days when I waited tables, and my nights were filled with weird and wonderful dreams of minutia -- tables filled with red wine glasses, only a tiny bit in each one, all needing to be cleared in that instant, fish that coiled up off of plates and into customers' laps, endless back and forths with undercooked steaks, yapping mouths and tiny plastic ketchup containers. Now when I wake it's wondering whether they'll play lacrosse in the rain (yes) and how much, exactly, is saved when the sprinklers don't come on.

Friday, January 20, 2012

An End

The week after Christmas, and the skies had reverted to gun-metal. It was cold, and when I said good-bye, he turned into a crowd of people and I watched his back and then his head, and then the crowd closed around him and he disappeared.

Small Stone 20

Too Much Information

Virgo the Virgin

I'm generally not a blogger that reveals anything about sex (I'm a virgin), marriage (I've had two) or incontinence. Yesterday, though, in a torrent of words, if not creativity, I revealed that I had wet my pants -- a tiny bit -- two times in one day in the parking lot of the Grove, our large Disneyfied outdoor mall. I want to assure my more decorous readers that I've not jumped a line and will now start writing about my private parts with any regularity. But I wanted to clarify several things.

  • I've had three cesarean sections (immaculate conception, since I'm a virgin, see above), so I can't blame my incontinence on that (in fact, given my virginity, things are -- well -- as tight as a drum)
  • I have a tendency to idiotically not go to the bathroom when I need to go. There's that moment when you absolutely have to go, but if you can steel yourself and hold on (and you're still a virgin), that moment passes. The trouble with this technique is that it doesn't account for one hour of wandering around a large parking lot. The moment passed yesterday, and then it came again -- in other words.
  • Given the above (the three cesareans, the fact that I'm a virgin and things are intact, and that sometimes I idiotically think myself a camel), I'd say that I don't really need the Poise pads. What I might consider, though, is wearing some Maximum Absorbency Garments (MAGS), a la astronaut style.

Consider that the only too much information post you'll get for quite some time. Now I'm back to my regular programming.

Thursday, January 19, 2012

Let's call it a day

Henry, Me and Sophie, 2001

The reason why I posted this photo is that it makes me happy. It's been a wildly interesting week, albeit draining. Not only did I get engaged in a discussion with a twenty-five year old on Huffpost over cognitively disabled individuals and whether or not they are persons, human or non-person humans, but on Facebook I also fell into the Trap That Leads Nowhere of debating the traditional western scientific model versus integrative care that has worked for our family. The latter discussion was actually good-natured (although it pained me to have to interact at one point with Vaccination Militant Paul Offitt) -- and I learned something, too, given another physician's sensitive responses. The one with the Woman Whose Only Credentials for Debate on Disabled Individuals Are An Undergraduate Degree in Philosophy/Bioethics and Being the Mother of One Two Year Old was almost nauseating at first and when all is said and done, I've relegated her comments to the dustbin, coming from someone either truly evil (superstition) or sociopathic in the vein of Nazis, racists and the like. The Facebook discussion and the Huffpost back and forth were neatly tied up by the doctor I was talking to on Facebook when I told him that I'd been engaged in a far more upsetting discussion about humans, persons, and nonhuman persons or nonperson humans. His response was Tell her you need to read her thesis in the original 1930s German before you can comment further. I checked LIKE on that and moved on. Gretchen, my real-life friend and fellow blogger commented on one of my posts with a quote of Elizabeth Taylor's character in Cat on a Hot Tin Roof:  I'm sorry. I could never keep my fingers off a sore. Don't you love that? I'm always going to be one who fingers the sores, opens my mouth and types furiously. But I'm also going to be one who says, you're right, I'm sorry or Thank you for opening my tiny, little mind. It makes me want to post a photo of the inimitable Liz as Maggie: 

So, yes -- back to the interesting albeit draining week. On Tuesday night, I drained my car's battery at the lacrosse field where I idiotically kept the ignition on for over two hours, charging my phone and reading while both boys practiced. On Wednesday, I went to our huge local outdoor mall to return some jeans that I'd bought for Oliver that he had determined were "uncool," and since I was talking on the phone (speaker) while looking for a parking space, parking and then walking to the Gap, I had absolutely NO IDEA where my car was parked. I walked up and down the aisles of three different levels of the lot, pressing my automatic lock thingamajig. Did you know that they beep through several floors? I finally found my car, but not before I had shed a few tears and wet my pants a tiny bit. I'm not kidding. And then, on the way out, when I fed my parking ticket into the little machine, followed by my credit card to pay the $3.00 charge, the machine spit my card out and it fell onto the floor. I was in one of those unattended lines, people were honking in line behind me, and I couldn't open the car door to retrieve my car because I was so close to the machine. Eventually, an attendant came to my rescue and while kind, he couldn't speak English so didn't understand that my card was under my car, had fallen and couldn't get up. He eventually understood, gave me my card and I scratched off, but I wet my pants a tiny bit more. I am not kidding.

So, the photo makes me happy because I love how happy I look. I am pregnant with Oliver in the shot; our family would soon become complete; I had no knowledge of the internet and still wore a beeper, carried cash and had no friends on Facebook. 

Wednesday, January 18, 2012


I like this:

Hello from ant1mat3rie on Vimeo.

I walked down the hallway this morning, guiding Sophie to the front door and out, her feet splayed toes touching the walls, and when we got too near one of them I reached up to right a tilted photo hanging there and noticed that nearly every photo was tilted ever so slightly this way and that and when Sophie's head veered toward the right as it is wont to do I wondered whether the universe had turned  or tilted on its axis and the frames hadn't followed suit.

Small Stone 18

Tuesday, January 17, 2012


I wish that parsley fresh plucked from a kitchen garden and placed in a blue vase would take me to the Italian countryside. But when I pinch a leaf and roll it between my fingers, the whiff of green and bits that stain is just parsley.

Small Stone 17

Here's a big old door, some shit and a fly

Dutch art nouveau drawing, 1901

I've been making comments over at Huffpost in response to a recent article about the child who was denied a kidney transplant based on "mental retardation." You can read more about that here on my blog, but I won't post a link to the Huffpost chain because it's so maddening, and I don't feel like going over there and getting any more involved.

What I do want to show you, though, is one person's reply to one of my comments.

Her comment:

Assuming the family can cover the costs and are a match, yes they should be allowed to donate to their daughter, although I'm not convinced that it would be in her best interest as far as quality of life and being able to understand what and why the procedure is being done to her.  It's possible she may be put through more suffering, not less by being given a transplant

As far as the broader discussion about rules relating to transplant recipient registries

­, I couldn't agree with you more.  It's not first come, first serve; in a world with a shortage of organs, comparativ
­e health and quality of life must be taken into considerat­ion, and that does include mental capacity.  One of my very dear friends lost her 13-year-ol­d daughter, while she was awaiting a double lung transplant.  Frankly, I would be heartbroke­n if I were to learn that lungs Jena could have received were given to someone with significan­tly less of an ability to live life or with a degenerati­ve condition like this.
My response (because I'm like a fly drawn to shit):

Your comments are exactly the reason why families with children with special healthcare needs often despair and grow angry. I would urge you to read some of the material written by those who do have children with disabiliti

­es and by adults who are disabled. You need to educate yourself about issues like "quality of life" and "an ability to live life" before you make such statements
­. Robert Rummel Hudson's article "Quality" would be a good place to start.http://sup­portforspe­cialneeds.­com/2012/0­1/16/quali­ty/ 
Her reply:

My goodness, when I say "quality of life," I'm not referencin

­g the ability to ice skate or not, or even the ability to hold down a job, let alone something as trivial as looks, as is referenced in first link you shared (which incorrectl
­y lists Amelia's age, by the way).  That's one slippery slope argument that is just downright silly.
When I'm referencin

­g quality of life, I'm talking about the individual
­'s overall well-being as a function of pain and symptom management­, spiritual, social, psychologi­cal, and emotional well being.  It is very possible that receiving a transplant could further diminish Amelia's quality and even length of life.  Sometimes the kindest thing is doing nothing at all, as people often chose to do for terminally ill family members
Further, there is a distinct difference between a "human" and a "person," a distinctio

­n which may or may not be relevant here, but certainly is relevant in discussion of the right of significan
­tly mentally disabled or incapacita­ted humans (like those in commas) to receive care, and the moral duty of others to provide it.  Philosophe­r Mary Anne Warren provides one of the most cited criteria for personhood­, or humanity in the moral sense:
1.  Consciousn
­ess (of objects and events external and/or internal to the being), and in particular the capacity to feel pain;
2. Reasoning (the developed capacity to solve new and relatively complex problems);
3.  Self-motiv

­ated activity (activity which is relatively independen
­t of either genetic or direct external control);4. The capacity to communicat
­e, by whatever means, messages of an indefinite variety of types, that is, not just with an indefinite number of possible contents, but on indefinite
­ly many possible topics;5. The presence of self-conce
­pts, and self-aware
­ness, either individual or racial, or both. source These traits combined comprises a "full" person, but Warren doesn't believe that all attributes must be present to consider someone a person in some sense.  "(1) and (2) alone may well be sufficient for personhood­," she claims, and neither does she insist that any one of the criteria is necessary, although she seems to believe that reasoning is both a necessary and sufficient condition for personhood­.
If we had infinite organs and resources to provide transplant

­s for those organs, then yes all human should have them.  However, we don't live in that world, and that does mean that persons have more of a right to an organ transplant than do non-person humans.

My goodness, did you hear the sound of that door, slamming? I'm looking through the peephole, now. Is that you, Single Dad? Help! Is that you Lisa? Help! Is that you, Claire? Help!

I've been busy slamming them

photo via artsytime

Bless those who challenge us
for they remind us of doors we have closed
and doors we have yet to open.

Native American prayer

Monday, January 16, 2012

The sound of the springs

The sound of the springs on the new trampoline rise above even the screams. I don't like jumping, my stomach flies up, I lose the sense that my arms are connected to my shoulders, proprioception gone backward, and when the world appears at the top of the safety net it feels like only an edge. I prefer the ground going down deep and forever.

Small Stone 16

This is my MLK post

I, too, have a dream.

I have a grand dream about persons with disabilities, persons like my daughter Sophie and the many children and adults that I have met here and in person, being fully accepted and included in all aspects of our culture, with all the rights and dignities accorded to all humans from birth until death.

That's my simple dream.

My more complicated dream is that my daughter Sophie will stop having seizures and live a long and happy life.

video via my friend LP

Sunday, January 15, 2012

The Hum

Sophie, March 2006

Paying attention, it would crack me into a million pieces. Just for a moment, though, it hurts my lips, numbs my throat, catches my breath. Does she hum to shut out or to invite in? Raise a joyful noise unto the Lord runs through my head but there is no joy in the steady hum through years and years. Try it sometime, the vibration that makes one think of skull not head, a grate not tune, the constant reminder of I am here and I am not.

Small Stone 15

Shower Caps

This is the back of Oliver's sweet neck. He got a haircut yesterday at the salon where I go. He grinned the entire time and asked Andie to put gel in his hair and make it spiky. Last night, when I insisted he take a shower, he asked whether he could put on a plastic shower cap so that the spikes would stay. I told him that we didn't have any shower caps and then he reminded me that I had bought these weird plastic covers for leftovers and that I called them shower caps. So he went to the kitchen and put on this "shower cap," all the time chattering about it and laughing and asking me to look at him and then he got into the shower and since our house is so small, I could hear the water hitting the shower cap and splattering off of it and this went on for quite some time until he got out of the shower and came into my bedroom with a towel wrapped around him and the shower cap still on his head. He took it off carefully and felt his hair even more carefully and then exclaimed Cool! It's still dry, Mom! And he was still smiling and so light and buoyant I believe he might have sailed up and out of the room or even the back door and into the night.

Saturday, January 14, 2012

Love Letter

Lackawanna Steel Plant Complex, 1908

Elizabeth, Could I sing you a song if it was unpracticed. Could my heart weave its strands? The paper is thin, the shadow of my hand behind it, the letters pecked, back space and typed over in some previous lifetime, a woman by the well fetching water and not in the least concerned that it was a brutish day. Folded, unfolded, thirty years ago, the creases cut through words indolent and stupid licking its greasy ear the fear of industry the fear of the moral life the fear that all the dalliances were just that and placed at the end of the small spiral notebook that was closed and we both vanished for a moment from each others' sights which we thought took so long yet back again we were.

Small Stone 14

Let's Talk Some More - Part 2

Defendants, Nuremberg War Crimes Tribunal, 1945

1. Whatever proportions these crimes finally assumed, it became evident to all who investigated them that they had started from small beginnings. The beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the acceptance of the attitude, basic in the euthanasia movement, that there is such a thing as life not worthy to be lived. This attitude in its early stages concerned itself merely with the severely and chronically sick. Gradually the sphere of those to be included in this category was enlarged to encompass the socially unproductive, the ideologically unwanted and finally all non-Germans. But it is important to realize that the infinitely small wedge-in lever from which that entire trend of mind received its impetus was the attitude toward the nonrehabilitable sick.

-- Leo Alexander, American psychiatrist, neurologist and key medical advisor at The Nuremberg Trials. Dr. Alexander wrote part of the Nuremberg Code which provides legal and ethical principles for scientific experiments on humans.

2. Ontology, the study of the
being, holds that life is a supreme good that cannot be
measured and consequently cannot be graded. On the opposite,
health can be assessed and graded. Physicians are
constantly establishing whether the health of their patient
is improving or declining. However, the value of human life
cannot be measured, and is not determined by the quality
of an individual’s life at a particular time point (23).

-- from a paper titled Transplantation and Mental Retardation: What is the Meaning of a Discrimination

3. UN Convention on the Rights of Persons with Disabilities: Article 25 - Health: States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Article 10- Right to Life: States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

United Nations' Convention on the Rights of Persons with Disabilities, 2007

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Let's Talk - Part One


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