Conversation

Giulietta Masina, La Strada

Do you think about things while you're showering or focus on your shower? he asked. She was combing out her wet hair, already anxious about going to bed too early. With wet hair. What? she asked, as was her wont. Or what. She had a hard time picking up the lower register of his voice, of any voice really. It was one of those things that she'd noticed in the last year or so along with the tiny age spots at the base of her right thumb. She wouldn't do anything about it. Do you think about things while you're showering or focus on your shower? She leaned over, picked up her clothes from the floor and dropped them into the hamper. I don't focus on the shower, she said. She felt vaguely irritated at the question. She wondered if she wanted to be unknowable. But I don't really focus on much these days anyway. He asked, What do you think about? What did she think about? The peeling paint at the top of the tiles, the gray spots on the ceiling that she couldn't reach to clean, her perpetual disappointment, the way the tile felt on her forehead where she rested it, the water streaming down her back. I cry in the shower sometimes she said. But not tonight. He put his phone down and turned to his side. She didn't tell him that she'd been thinking of Giulietta Masina's face in the Fellini movie, her devotion to the strongman, however cruel, how she climbed into the back of the carnival truck with the mermaid on the side to serve him, how she ultimately went mad, her love and devotion abandoned, all the magic and superstition and miracles.

What I Love

1. When Bob Dylan plays the harmonica, especially on the album Blood on the Tracks, particularly the end of the song You're a Big Girl Now
2. First two and last two lines of novels: "Yes, of course, if it's fine tomorrow," said Mrs. Ramsay. "But you'll have to be up with the lark," she added. / It was done; it was finished. Yes, she thought, laying down her brush in extreme fatigue, I have had my vision.
3. Cheese, baguette, olives, dark chocolate
4. The taste of bourbon the heat as it goes down
5. Your dark eyes, full-on then closed, kissing them on tiptoe
6. Lying awake in bed in the morning, just after dawn
7. Banter
8. My neighbors, particularly those that share antipathy toward the McMansion developers and send me funny texts
9. The opening scene of Wim Wenders' Wings of Desire and Federico Fellini's La Dolce Vita
10. The perfection of both lyrics and melody of Joni Mitchell's Both Sides Now

"This life is so full of confusion already, there's no need to add chaos to chaos"

A friend of mine posted this clip on Facebook, reminding me of one of my favorite scenes in one of my favorite movies of all time. In this few minutes of film, there's an answer to my confusion over the Mike Kelly exhibit, the insanity in the Middle East and the Ukraine and all the rest of it -- seriously. Oh, and and there's Marcello Mastroianni.

Things I've seen

Last night, I went out to eat with The Poet at a strange and wild restaurant that I couldn't begin to do justice with words. Think stuffed animals -- not the toy kind -- antique zoological prints, a mantelpiece, strange and careful collections. Think Sigmund Freud's boudoir, as the Poet said. Think the aching and fussy decadence of Vienna with the mirth of Fellini. Two young men played music, one a trumpet and the other a guitar and then a saw. Yes, a saw. It sounded like a woman moaning and not in a good way. Who knew that scraping a bow through the tines of a blade could disturb the air? There were crows (stuffed) here and there. I do hate crows but laughed at one above my head. We shared a plate of meze -- tapenade and humuus on salty crisps. I had clams and chorizo in a spicy broth, sipped a glass of white wine and laughed.

It would seem that the zany atmosphere even changed what I looked like.

Down Syndrome, Comments, and Fellini

Allison Piepmeier, a brilliant academic writer friend of mine, and the mother of the incomparable Maybelle, had a piece published in the New York Times'  Motherlode column a couple of days ago. Allison wrote the piece as a response to the recent law passed in North Dakota outlawing abortion for fetal conditions such as Down Syndrome. I won't review what she said, as the piece is short, and I'd urge you to read it yourself, but what has stuck with me in particular all day long are the more than 200 comments that I made the mistake of skimming through after reading Allison's intelligent words. Filled with vitriol -- on both sides of the abortion issue -- they are, with few exceptions, some of the most ignorant and upsetting opinions and viewpoints that I've read in a long, long while. They are the stuff of depression, the stuff that drives some of us in the disability world to want to retreat into caves, overwhelmed at the prospect that no matter how hard we try, we may not ever fully engage people into valuing the lives of people with disabilities. Full inclusion might never happen, our children and fellow citizens might continue to be commodities, burdens that inhibit productive life, argued over in the marketplace.

I'll say here that I am particularly repelled by Dakotan lawmakers who have passed some of the most draconian laws against women's reproductive rights in the country, but I am also disturbed by those in the disability community who champion the law as, somehow, a victory for the most vulnerable. I have been asked the infamous question about Sophie and abortion -- whether I would abort her if I'd known what would happen. To this question, I will only answer that it's impossible. It's impossible for me to answer this question. I am who I am because of my daughter's strange journey on this planet, and I am who I am, living questions, not answers.

And now let me retreat to my cave. I'll be watching this:

Two Things and Final Call

Federico Fellini directing a film

I've got two things for you this morning:

First, please send me your photos of yourself for my Video Project. Please send them to me as soon as possible as I'd like to put the video together by the middle of next week. Here are the instructions or you can click on the link above:

1. Write down on a piece of white paper or poster-board advice that you would give to yourself, that long ago self, when your child was diagnosed.
2. Have someone take a picture of you holding the poster
3. Email me the picture at elsophie AT gmail DOT com
4. If you want to send more than one, feel free. I'll use them all.
5. Spread the word to your friends. MEN, please participate!
6. I'm setting a goal of finishing this by May 15th, so please help me and send yours in (if you haven't already!) as soon as possible.

Second, have you seen this beautiful video? Set aside your distractions, turn up the volume and be happy: