Sarah Palin Doesn't Speak for Me

When I heard that the Republican vice presidential nominee would be delivering a policy address on “special needs” children (because this was part of her “portfolio”) I thought, really? Sarah Palin, mother of a “special needs” child since April, considers herself already qualified to step confidently to the microphone and speak to, or on behalf of, us—parents of children with disabilities—nationwide?

It’s true that parents raising children with disabilities—along with adults with disabilities, of course, and those who care for, and fight for the rights of people with disabilities of all ages—belong to an unofficial alliance comprised of people who ‘get it.’ Even without a secret handshake, members of our organization recognize each other more or less instantly in public, just as we can easily identify people who think they understand, and talk as if they do, but really don’t. Governor Palin, by virtue of her Down syndrome son, already has a provisional membership in our club (the club hardly anybody wants to be a member of), but she hasn’t, in my book, earned the right, as she suggested in her speech on Friday, to be our “friend and advocate in the White House.” Sarah Palin doesn’t speak for me.

For weeks I’ve been watching uneasily as she stepped before crowds with her bewildered and somewhat stiff-looking baby in her arms, the rest of her large family parading silently behind. The roar of crowds was a good thing for Trig? Or was it possible Governor Palin, or someone in the McCain-Palin campaign, hoped to win votes with this heart-warming display of family values and inclusion? I came away from her speech on Friday, as I do from many of her public addresses, scratching my head.

But wait, let’s back up and try to be fair. Sarah Palin does have nice teeth. Her Japanese eyewear is outstanding, and really, she looks great in her new clothes. Simply put, the woman is nicely put together and shockingly photogenic. Unlike many of us, she has mastered the art of walking in very high heels, and, I mean, who has that many good hair days in a row? And with such variation! There.

Back to the real issue: I’m a mother of a child with disabilities; the Republican Party is offering me what, exactly? School vouchers, it sounded like, and generalities like, “giving these families better information” and the “reform and refocus” of dollars already in the budget.

It’s good news that both campaigns appear to consider the disability community an actual constituency worth winning over. Yay. But it’s abundantly clear that Barack Obama and Joe Biden have given their “Plan to Empower Americans with Disabilities” a great deal more thought than John McCain and Sarah Palin have given theirs.

Barack Obama and Joe Biden, for example:
· Believe all states should have newborn screening programs, and they support a national goal to provide re-screening for all two-year-olds (the age at which some conditions, including autism spectrum disorders, begin to appear) because disabilities identified early enough will help children and families get the supports and resources they need.
· Want to invest $10 billion per year in early intervention educational and developmental programs for children between zero and five.
· Support a measure, cosponsored by Obama, that would expand federal funding for life-long services for people with autism spectrum disorders, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.
· Support vocational rehabilitation programs and will assure there is sufficient funding to empower Americans with disabilities to succeed in college and beyond.
· Will appoint judges and justices who exhibit empathy with what it means to be an American with a disability.
(I could go on and on but instead I’ll simply urge you to visit the links provided below.)

I’m clear that Obama is the “friend and advocate” I want in the White House.

But here’s what’s really worrying me this morning: some parents of children with disabilities—because they feel tired and worried so many of their waking hours, and because they so need someone in the White House who ‘gets it’, and because they might not have the time or energy between suctioning their kids’ lungs, or whatever, to compare the two campaign positions closely—some of these parents might have listened to Governor Palin’s speech on Friday with feelings of weepy, overpowering hope, and concluded that this perky woman—with her nice clothes, cool spectacles, interesting up-do’s, down-home soccer mom delivery, and Down syndrome baby—is in the better position to help them.

That would be a mistake.

* * *

Be Here Now

Molly had a grand mal seizure while at work stocking fingernail polish at Long’s this week. Waking up in an ambulance wasn’t her favorite thing, and speeding to the ER, again, wasn’t ours. All three of us felt our lives immediately contract, but I had planned four days of writing in Sea Ranch with my friend Wendy and I decided to go anyway.

At first there were flurries of phone calls, torrents of tears, guilty hand-wringing, and massive misgivings. Driving from our house in Sea Ranch to the one cafe in Gualala with wireless internet, Wendy said, “If you need to go home to deal with all this, honey, that’d be okay—you know that, right? I mean, I love it here and I love that the writing is going well, but you do what you need to do. Okay?”

“Here’s the thing,” I said, staring out the window at the ocean, “We’ve been dealing with crises like this for twenty-two years, Dan and I. More than that, actually. What I figured out not that long ago is, if we let shit like this derail us from the things we want for ourselves, when we don’t go ahead and do these things anyway, our lives get so...small. So narrow, you know? And bleak, filled with frustration and resentment.”

Wendy nodded. She has her own tsuris.

“Dan is handling things at home,” I said. “I trust him. It’s okay for me to be up here, I think, and it’s even okay for me to go ahead and feel happy.”

Hovering off shore, maybe ten miles out, was the same layer of marine fog I noticed the day we arrived when we first caught sight of the ocean. It doesn’t seem to roll in at night and clear off in the late morning the way you’d expect. Over us, it’s clear. The whole time we’ve been here, nothing but breezy sunshine.

A Buried Lead

Good things were accomplished today. I almost finished an essay about mole-making I started five years ago, I finished another essay about death and elephants I’ve been struggling with for at least a year, I power-walked for seventy-five minutes along a path at the edge of the ocean; I beat Wendy, decisively, at Scrabble, I organized all my beads in preparation for creating necklaces for three of my friends’ girls who are about to graduate from high school, I read an analysis of Michele Obama’s belt and big-beaded necklaces, and I realized that suffering has, for a long time and mostly invisibly to me, transformed my daughter into a bodhisattva.

Bon Voyage

Sitting down after not writing for awhile feels like listening to the rumble of big turbines firing up in the hold of a city-sized ship. You stand up on deck in your new hat and your heavy wool coat watching seagulls overhead, preparing to wave to whomever you’re leaving behind, and then slowly, before you hear anything, you begin to feel a depth of sound vibrating in the soles of your feet, and it grows into a shudder, like an earthquake, which is accompanied by a whining scream and periodic clanking until you realize what you’re feeling is fear. You can’t visualize what’s happening down there in the machinery, for one thing. Maybe it smells like diesel and bilge water. Maybe sweat-streaked workmen in grubby overalls are yanking on huge levers and monitoring valves and shouting to one another over the din. There must be a large store of fuel down there, coal maybe, or something more instantaneously flammable, like petroleum, or—even more frightening to consider—something explosive. Possibly nuclear.

What it sounds like, basically, is danger. And inevitability.

Where are you going, exactly? And why aren’t the people you’re waving to going with you?

Shouldn’t the process of booting up your laptop—the dainty pressing of a single M&M-sized button—while you sit in the kitchen on a Sunday morning, drinking tea in your pajamas, feel tame and predictable? Relatively risk-free?

It doesn’t.

Is there an age beyond which you may not blog?

My friend, Allan, goes to the massage school in Emeryville three times a week for bodywork. To some, this may seem excessive but if you take into consideration that having a trainee-masseuse’s earnest hands work on you for fifty minutes costs only $35, it’s not so bad. The third time I went there myself I noticed a little sign at the check-in desk advising seniors that the cost for them is $30, and a senior is someone ‘55 or older’. As it happened, I had just celebrated my 55th birthday and I was unambiguously thrilled to point this out to the very young trainee-receptionist. The thrill of saving five dollars continued as my masseuse (who looked no older than twelve—how could that be?) showed me to our little curtained-off cubicle, as I disrobed, as I hopped onto the table, as I awkwardly wiggled the top sheet over myself, as I placed my forehead against the paper on the padded head-horseshoe, and even as I scrutinized, through the hole, the nubby rug on the floor for evidence of sloppy vacuuming. But by the time my masseuse returned, it was coming into focus for me that I had, for the first time, been officially recognized as a senior, and I was not feeling so thrilled about that. Instead, after I described which body parts were giving me trouble this week, I started silently subtracting the number fifty-five from what I hoped might be an average American woman’s life expectancy, which I decided, after some back and forth, must be somewhere around ninety. Maybe that was a little high. Maybe eighty-five. Or eighty-eight. If I was very, very lucky. No matter what adjustment I made to the end point, however, there was no way around the fact that I was now well beyond the halfway mark.

Bummer.

Time’s a’ wasting, is what I decided by the end of my fifty minute massage. I still want to go to India. And Vietnam. (Currently out of reach, but still imaginable.) I would like to walk slowly up a dusty evening road to a rented farmhouse in the Italian countryside in the springtime. (Not entirely out of the question.) I would like to easily button my favorite pants—maybe even feel them be a little bit big. (Definitely do-able.) I want to finish writing my book about how it has been to mother and love and adore and admire—my amazingly capable disabled daughter. (Harder, but not impossible.) Also, I want to blog. Are seniors allowed to blog?

Composting

I love the idea of composting. When Berkeley delivered to all its taxpayers a green bucket-like receptacle for citizens to collect table scraps instead of feeding them into the maw of their garbage disposals or trash compactors, I felt like, Yes, this is good! We needn’t feel bad when ingredients liquefy in the fridge before we’re able to turn them into edible somethings because now we can contribute the sludge to Berkeley, and Berkeley will haul it away and stir it up and chop it up and do the things you do with vegetable matter to turn it into gorgeous, chocolate-colored soil. Just think of the possibilities for using this divine dirt: dahlias, lemon trees, redwood trees, Brussels sprouts, strawberries, roses!

Our new green bucket even makes me feel better when I look into the mirror and I see myself slowing turning into compost.

And what if all the scraps from my life—the almost aspirations, the smelly sufferings, the bruised absurdities and decomposing disappointments—what if all of it were available for the making of nutrient-rich soil out of which splendid stories might spring? An assembly line of rot into riches.