Myndtalk Podcast

I did this interview with Dr. Pamela Brewer back in August and remember enjoying it even though it was on the telephone and I have an aversion to telephones.  You know when someone asks you a question, and you are astonished that your answer so well squares with your thoughts?  I think it has to do less with the wording of the question than how the question is asked.  Dr.  Brewer had an open and understanding way about her that allowed me to launch into exactly what I care about amidst a bunch of laughter. So much laughter.   I’m happy to be able to post it here MyNDTALK podcast

 

Bravo for Heidi Latsky Dance

A quick Hallelujah for the Heidi Latsky Dance performance at the Baruch Performing Arts Center last week.  Latsky started integrating people with disabilities into her company in 2006, and it is a real joy to see them now.  This particular show D.I.S.P.L.A.Y.E.D. started with the audience moving and the performers still. The living statues were not given names, only body types.  For example: “Female, late 40’s, brown hair with gray, Latina, 5 feet 4 inches, tiny brown eyes, circular face, high cheekbones, small forehead, skinny physique, exceedingly strong arms and hands, toned right leg, missing entire left leg at hip, slow but steady gait, moves with ease.”  You could study them, ogle them, gawk at them,  but they did not look back at you, or otherwise acknowledge your presence.  On stage, the stillness exploded into movement, a festival of gyrating, leaping, rising, falling, wheeling, rolling, straddling, tussling, embracing.  The dancers had all sorts of bodies, and their stiffness or looseness, wheeled-ness or legged-ness, oldness or youngness complemented each other and made their interactions, or lack thereof, all the more riveting.  The effect was of a pulsing urban madness undergirded by solid form.  Check out the clip . It was dazzling. Afterwards the audience was invited on stage to keep ogling and documenting, resulting in one of my favorite pictures (I know it’s blurry.  I don’t care):

IMG_2508

And here are some beautiful living statues:

IMG_2487

IMG_2483

IMG_2512

IMG_2497

 

My Day at Rikers

One of the books that most marked my adolescence was In the Belly of the Beast.  I read it in the eighties, when I was eighteen, aware of its controversy.   The author, Jack Henry Abbott, had been put in reform school at the age of twelve, and with the exception of a few breaks, had remained behind bars for the rest of his life.  In 1981, in connection with the publication of his book, he was released on bail.  A few weeks into his freedom, he got into a fight with a young waiter who wouldn’t allow him to use a restaurant bathroom and stabbed the waiter to death.  As recently as this had occurred, Abbott’s words didn’t feel contemporary.  They felt timeless, or at least datable to anytime after the Industrial Revolution.  His voice was clear and intelligent, brutalized and brutal.  It left me with the lasting belief that the institutional and personal cruelties of reform schools and prison have the effect of deforming rather than reforming those caught up within them, whether they are the incarcerated or the incarcerators.

I suppose prisons horrified me even before reading Jack Henry Abbott.  When I was sixteen, living as an exchange student in France, there was a prison a block away from my school.  You couldn’t see the building, just the thick grey wall that surrounded it. I would walk beside this wall, feeling its weight on my skin, knowing that there were people on the other side. I would pray in my heathenish way for them, and marvel at how crude and oafish adults were, that they could they lock people away, depriving them of sun and water and the people they loved.  And now I am an adult, sweeping the floor without anyone telling me to, bossing my kids around. There are still prisons and it is my world now.

After the birth of my son Felix, whose brain was damaged in utero, I began to understand imprisonment in a broader way.  At first, it was just that having a child with disabilities made me feel like being on parole. People from a daunting number of agencies and acronyms were forever knocking on our door with clipboards and questions and requests for further meetings in dreary offices where Felix and I would wait for hours to be questioned by officials whose purpose was unclear, but who had to be obeyed, and whose forms had to be filled out, even though I had filled out dozens of such forms before.  Privacy became a thing of the past, our home a parade of visiting therapists, aides, assessors, social workers, occasionally policemen, checking up on our kitchen and Felix’s crib, measuring his vocabulary, noting his bowel movements, feeding the data generated into various bureaucratic systems that would need to be re-fed in a few months time.

I grumbled about this, then caught myself when I realized that if I’d been born in the projects, I likely would have had to put up with these sorts of intrusions from the get go. As it was, I’d lived with an enormous amount of freedom for over thirty years.  Parole might be a drag, but it wasn’t that bad.  It was like being a wild animal who is grabbed by a scientist and tagged with an ankle clip or computer chip, then released.  A disruption, yes, but far better than being put in a zoo.

When Felix grew older, I began researching the history of disability in the United States and found that for a great many people the link between imprisonment and disability went far deeper than the feeling of parole.  In the nineteenth through the mid-twentieth centuries, doctors routinely recommended that children and adults deemed “feebleminded,” “deformed,” or “insane” be sent away from their homes and confined in institutions.   These institutions were not called jails.  They were called schools or asylums, and some of them were truly restorative, humane places where people could come and go, and where learning, therapy, and decency were practiced.  But many of them operated like warehouses.  Children and adults who did not fit an ideal type were stashed away in buildings the size of city blocks or “farms” in rural areas.  Once in, they stayed in.  Out of sight, out of mind.  Visiting was discouraged.  Parents were told to forget their children; children were not given home leave.  Children grew to adults in such places, and remained there when they were old.  Those who did manage to get out reported overcrowded cells and dormitories, lack of basic necessities such as toothbrushes, an abundance of filth, medical experimentation and regular abuse.


In the 1960s and 70’s, activists within the disability movement shone a light on what was going on and called for the deinstitutionalization of the disabled.  Their work led to the Education for All Handicapped Children Act (now IDEA) in 1975, and the broader civil rights legislation of the  Americans with Disabilities Act in 1990.  In the new scheme of things, children with disabilities were to be integrated “into the community” and whenever possible attend their local public schools.  Families and schools were to be given the resources to make this possible.  In most histories, the story ends here.  The ADA is passed. Abusive state schools and psychiatric hospitals are shut down. People with disabilities are deinstitutionalized and progress is made.

But children and adults with disabilities still end up in institutions.  Families and local schools do not always have the funds, experience or staff to properly help them.  My son is a case in point.  Even with our family’s considerable resources, we couldn’t get Felix the sort of 24-hour attention that he needed at home, and he was going crazy with frustration and rage. In spite of our enormous love for him, the sleeplessness and violence in our house came close to breaking me and endangering everyone in the family.  

When he was ten, looking for a place that could take better care of him, we visited Crotched Mountain School, a non profit in New Hampshire that is funded primarily through Medicaid, federal and state government agencies, and local school districts.  It’s located on a mountaintop flanked with pines and oak trees and populated by deer and hawks and the occasional bear (Alerts go out when one is sighted and the kids and their aides have to go inside).  It includes a lakefront, wheelchair accessible trails, ten bungalows where 60 residential students live, and a school for ninety students with multiple disabilities from ages 7-21.  As we made our way to the school building, I noticed a gangly and furious teenager punching the ground by the roots of a tree while an aide watched from a safe distance, a walky talky in hand.  In the lobby of the school, a girl ululated and bit her hand in joy.  In a classroom, a boy in a wheelchair listed the state capitals on his communication device while his classmate spun around in circles.  Some might have found the atmosphere strange, but I was in heaven.  Felix wasn’t weird here.  He fit right in.   

I detailed how Felix blossomed at Crotched Mountain in my memoir, Strange Beauty.  One of the reasons I wrote the book was to champion open and flexible residential schools and advocate for more of them.  For they are rare.  In their absence, children with disabilities routinely end up in institutions that are drearily reminiscent of the institutions of old, although now they are not called schools and asylums.  They are called juvenile detention, jail and prison.   

According to the National Council on Disability, about 85% of incarcerated youth have a disability.  Their disabilities are generally invisible i.e., mental illnesses (often triggered by trauma), autism spectrum disorders, and untreated learning disabilities like dyslexia and ADHD.  As anyone familiar with mass incarceration knows, those being punished are disproportionately poor and colored.  The richer and whiter you are, the more likely you will be able to post bail.  The more likely, also, that your disability will be acknowledged, respected, and accommodated.  But as recent news stories demonstrate, even white ASD kids, nine- and ten-year old, are being dragged from school in handcuffs, and charged for offenses like hitting an aide and pulling hair.

We need more flexible and understanding special needs schools.  We also need to reach kids with disabilities who are locked up.  For a while now, I’ve been wondering what Extreme Kids & Crew can do in this regard.  I founded Extreme Kids & Crew when Felix was seven, in order to create a space where people of all abilities could connect through the arts, movement, play, or simply by being there.  We have grown over the years, and have gotten good at what we do, and have attracted thousands of children and their families from all over New York City. But we can’t reach kids that are institutionalized.  So how do we set up an Extreme Kids & Crew arts program for “justice-involved” youth? How can we connect with their families? What would such a program look like?

As I’m no longer in charge of Extreme Kids, I went to the director and the board, and we decided that I would spend a year researching arts programs in the justice system, finding allies, and locating a good New York City site for a pilot program.  I’ve decided to write about the process here, as I don’t want to get lonely in my scheming, and it seemed like a good way to get feedback.  (If any of you have advice or leads, please contact me).  

I’ve taken it as an auspicious sign that right after dedicating 2018 to this project, I was invited to a book launch at Rosie’s, the woman’s jail in Rikers Island.   The invitation came from the NY Writers Coalition, a non profit that runs dozens of free creative writing workshops around the city, with a focus on writers whose voices often go unheard.  For the past seven years, they have run a workshop in Rosie’s, and were publishing their third collection of poems from women incarcerated there.  The event was to take place at 12:30 on January 23rd, but I was warned that I should take the day off, as it takes a long time to get to Rikers, and conditions there are unpredictable, with the possibility that a lockdown could delay or cancel the reading or temporarily prohibit us from leaving.  I was also told not to bring a cell phone or a purse, and that all personal items were to be carried in a clear plastic bag or left behind.  

The morning of the launch was drizzly and gray.  I wandered over to the NY Writers Coalition office, where the attendees were gathering.  There I met Aaron Zimmerman, who founded the organization fifteen years ago, his staff, all young and gorgeous and hip, the actress and poet Ashley August, who would be performing at the event, and various board members and donors, including my friend and neighbor Barbara who I was delighted to see, as we rarely get a chance to hang out.  We took the G train to the end of the line at Queens, then the Q100 bus to Rikers Island’s outermost parking lot, which is on the mainland, alongside the ramp to the Memorial Bridge.

The bridge is the only way to get to the island and is patrolled by two guard houses with flashing red lights mounted to their roofs.  There were a couple rusty trailers where visitors signed in.  We waited in a line and handed over our IDs and received badges with numbers on them.  Then we waited some more for the bus that would take us across the bridge.  My fellow attendees grumbled, but I’ve gotten used to long waits from my time at disability agencies and hospitals. As we bounced about to keep warm, Barbara and I noticed a guard whose hair was immaculately blow dried and in place, even in the rain.  He sauntered over to one of the guard houses with the flashing red lights and proceeded to wave in Mercedes and junkers, SUV’s and supply trucks.  Ever more vehicles came and went, their steady circulation hinting at the enormity of the operation.  


Eventually a white corrections bus pulled into the parking lot and we filed inside.  Our guide had a saucy voice and enormous paste-on eyelashes and seemed to enjoy welcoming us to jail.  As the bus trundled over the bridge, she spoke about what we would be seeing when we got to Rosie’s, whose official name is the Rose M. Singer Center.  She warned us about the testiness of the metal detector, and explained that the “the ladies” had different color uniforms, each color signifying a different status: detainees, inmates, adolescents, adults.  I can’t remember which colors signified what as I was focused on the window. There was La Guardia Airport.  Right there, directly across the river. There was the American Airlines logo. There was a plane taxiing down the runway.  I have been to that airport many times and had no idea, landing and taking off, how close I was to this place.

The bus trundled through parking lots, a sprawl of low squat buildings, trailers that housed various offices and hazardous wastes, empty lots surrounded by multiple loops of barbed wire.  Rikers is made up of ten jails and can hold up to 15,000 people, though it more often holds about 10,000, the great majority of whom are detainees who are awaiting trial and have not been convicted of a crime.  Another 10,500 people work here.  Together they make up what has been called the world’s largest penal colony.  Reformers of many stripes have long targeted its abuses and corruption.  Last year, Mayor de Blasio issued a ten year plan to close it down.  But for now, the place is still going strong, and its immensity and dreariness are chilling.

The bus stopped. We followed our guide into Rosies, took off our shoes and jewelry, and lined up to go through the cranky metal detector.  After much beeping and readjusting, we arrived at the other side, our shoes on, our names recorded in the guard’s clipboard, our hands stamped with invisible ink that would glow purple under light sources at more checkpoints down the way.   Past a sliding, barred door, we came to the Programs Corridor.  A crudely painted mural was painted on one side, two posters taped to the other.  One, in lurid greens, blues and blacks said something like: IF YOU HIT ANYONE, STAB ANYONE, STRANGLE ANYONE, YOU WILL BE ARRESTED.  The other, in warmer hues, featured a hand, palm up, holding some kind of heart or seed or pod.   Women in beige and dark green uniforms walked by.  A skinny girl, slightly pimpled and frizzy haired, slumped on a bench outside the room where the launch was to be held.  

The room was about the size of a classroom, windowless with white walls.  Folding chairs were arranged in rows with an aisle down the middle.  At the back were tables where chattering people in civilian clothes presided over clear plastic boxes of supermarket muffins and aluminum trays of Caesar Salad.  Maybe a dozen women in beige uniforms, participants in the writing program, milled about or sat together in a clump near the front of the room.  I wanted to talk with them, but felt too awkward. I contented myself with sitting on their side of the aisle, instead of the other, where most of the people from the New York Writers Coalition were gathered.   My friend Barbara sat next to me.  We muttered about the girl slumping on the bench out in the hallway.  She looked to be around the age of Barbara’s oldest son. She was smaller than Felix.

Deborah Clearpool, who leads the workshop, welcomed us and explained how it works.  Anyone can come;  some just come for one session; others are there for months, even years.  She never asks people why they are at Rikers, she just gives them a regulation three inch golf pencil (regular size pencils are deemed threats and not allowed) and paper and tells them to write anything that comes to mind, a list, a rant, mumbo jumbo, anything.  After ten minutes, they take a break.  If anyone wants to share what they’ve written, they can.  Their fellow writers listen and respond by telling them what they liked, leaving off negative feedback as it’s too early in the writing process to be useful.  Then Deborah will give them a prompt and they go back to writing.  They can write based on the prompt or pursue other paths, whatever they want.  And so the workshop continues, writing for ten or fifteen minutes, reading, listening, responding, then writing again.  Deborah has led this workshop for six years. Over a thousand women have written alongside her.  

First up was Ashley August.  I had thought she would be reading the women’s work.  Instead she closed her eyes then ripped into her own passionate, sassy, devastatingly articulate poems.  Her performance was riveting and left us wondering how anyone could possibly follow her.  Yet the unadorned voices of the women in their beige uniforms carried their own weight: There were rhyming couplets about enacting bloody revenge for rape and incest; a rueful poem about Christmas in jail being not so bad, as it kept the writer from getting high; a stirring poem called 20 Years, read by a woman whose name was vaguely familiar.  Later, I googled her.  To my astonishment, I realized that I had read about the crime she had been accused of. It had been a scandal in the nonprofit world, involving a weird sex toy operation embedded in an organization that brought music therapy to the sick and disabled, embezzlement, and an executive director who was brutally attacked, her face sprayed with acid.

After the reading, everyone ate salad and mini muffins together. Those of us in the audience congratulated the writers and got our chapbooks signed.  Then the writers were led away and we were led away.  I am left with a small treasure, the chapbook Can You Feel the Free In Me.   Deborah Clearman is named as its editor, but she said that she didn’t do much editing, other than correct a spelling error or two.  She simply asked her writers if they had anything that they would like published, and arranged what they gave her.  Here is one of my favorites:

 

The Love of Water

by Chivona H.

 

Water is the best thing God created.

You can wash with it, clean with it, cook

with it.  What a miserable world it would be if

we didn’t have water or water didn’t exist.  I

love water; I consider myself and my children

water babies. Well let me give you an example

how water can brighten up your life. Summer

scalding hot temperatures, beaches, pools, and

water parks and water ice trays, popsicles,

and slushies, cooling off with a popped fire

hydrant, playing water games with the ghetto

children–so much fun.  In the winter time a

long hot bath or a kettle filled with water

to supply all your needs like making

hot beverages and a nice bowl of cheesy

grits, something to keep you nice and

warm to go out and conquer the day on a fully

happy stomach and warm soul and spirit.  Water

water, I love you, need you, miss you, and

long for you water, water, water, I love you.

 

You can purchase a copy of Can You Feel the Free in Me on Amazon or you can contact New York Writers Coalition’s Program Coordinator, Catherine at catherine@nywriterscoalition.org. By contacting them directly, all proceeds will go towards funding their free creative writing workshops throughout New York City.

As mentioned in the post, the majority of people held at Rikers are awaiting trial, many for non violent misdemeanors.  Were they middle class, they would not be in jail, as their families would be able to afford bail.  According to a  2014 court report, 85% of NYC defendants given a bail of $1000 or less could not come up with the funds.  One small way to cut down on the number of people separated from their families, jobs, and responsibilities while awaiting trial is give to community bail funds. The Brooklyn Community Bail Fund, for instance, covers bail for non-violent offenders, ensures its clients get to their court dates, and connects them with jobs and housing programs.  

 

Kids Like Us

Back in the 80’s, I avoided dropping out of high school by becoming an exchange student. In what would have been my senior year,  I attended a French lycée in the town of Blois in the Loire Valley.  When I got there, I discovered that five years of junior and high school French had given me the fundamentals of reading and writing.  But I barely understood a word of the language as it was spoken.  Thank goodness for the other foreign kids at the school. I hung out with two Danes and a Kenyan and we created our own little language that was mainly English with smatterings of Swahili, French and Danish.  By spring, French had finally planted itself in my brain and I could follow my teacher’s lectures on Le Rouge et le Noir, giggle at the jokes of my classmates, even dream in French.  That’s when I learned that my classmates had earlier taken me for a snob. My discomfort with their tongue had come off as aloofness. Now that we could converse, they embraced me. On my return to the States, my entire class showed up at the train station to present me with a card and a necklace.  I had no idea that they were coming and could barely say au revoir for the lump in my throat.  I can still see them, bunched on the platform, waving enthusiastically until the train rounded a bend and they were lost from view.

That lump in my throat came back while reading Kids Like Us, Hilary Reyl’s moving account of Martin, a sixteen year old from California, who is accompanying his mother on a film shoot in Chenonceau, a chateau not far from the town where I lived in France. Reyl beautifully captures the colors and flavors and tempo of the Loire valley, along with the displacement and discovery I remember from that year.  Martin is not as displaced by the French language as I was, for his father, who he refers to as papa, is French, and taught him how to speak the language, bake quatre quarts cakes and read Proust. Martin’s displacement stems from his autism.  In California, he attends a special education school known as “The Center,” but for their time abroad, his mother has arranged for him to spend his days at a lycée to practice French with the locals.  Martin is also displaced by the end of his parents’ marriage, which is linked to his father’s imprisonment. The matter of fact way that Reyl deals with Martin’s father’s incarceration mirrors the way she deals with Martin’s autism.  Both are important pieces of information, but only one facet of their complex and sympathetic personalities.

As the story is told from Martin’s point of view, we are treated to an abundance of details that a more neurotypical narrator might have missed: the train ride from Paris to the town of Chenonceaux takes one hour and two minutes; forty percent of Martin’s French classmates wear Doc Martens, twenty-five percent wear Converses; the chapter headings include hours and minutes along with the date, so that the reader knows more precisely when Martin is forming his thoughts.  But numbers are not the pivot of Martin’s soul. Proust is. In particular, the first volume of In Search of Lost Time which he has shortened to Search.  Search goes with Martin everywhere.  When he gets confused, he scans its pages for words that can explain the pulls and tugs that people exert on him and each other.

When I was sixteen, and found myself sinking into despair, which occurred quite often, I’d take Catcher in the Rye off the shelf, open it at random and let my eyes fall upon a sentence. To my wonder, the words of these sentences invariably helped.  Sometimes they related to my plight, sometimes they redirected me, always they made me feel less alone. Martin’s relationship with Search is more literal; it is the portal through which he makes sense of the world.  Thus it confuses him when the pretty girl at the lycée who captures his heart is named Alice.  According to Search, she should be named Gilberte, and her parents should be artists, not gardeners. But if literalism grounds Martin, it does not govern him.  By the end of the story, he has not only kissed Alice, he has called her by her proper name.

Kids Like Us appeared in my mailbox because of my work at Extreme Kids.  If there is one thing that I have learned at Extreme Kids and through living with my son Felix, it is that the distinction between the disabled and the so called normal is at best blurry and usually in flux.  We all have our blind spots and inabilities, and though they might be taken for weaknesses, they can bring us to places of deeper understanding and experience.  This knowledge permeates Reyl’s book, which is not about autism, or a broken family, or an ambitious mother.  Rather Kids Like Us is a beautiful tale about young love, the solace of books, the complications of friendship, and the taste of Martin’s cassoulet.

Photo on 11-5-17 at 7.27 AM

A trip to the salon

The place is called Time.
It's at the end of our street.
I often pass by,
as I ascend or descend the subway steps.
Through plate glass windows, the freshly shampooed swivel,
as stylists wield blow dryers and wide smiles.
They are black.  I am white, as is my family.
We cut our hair at the kitchen table,
with dull scissors used to snip parsley and construction paper.
We once had special hair cutting scissors that I bought on Fulton Mall.
But they got lost in our house, which is big and commodious, 
a problem that sometimes comes with whiteness, but not always.

My daughters are starting school tomorrow,
and want to mark the occasion by dying their hair funky colors,
but not how we used to do it, with hydrogen peroxide and spray paint.
My kids are posher than I ever was.
Why be grumpy? Why not splurge and go to a salon?
A chance to support black business, and besides, it's nice in Time.
There's dance music playing, and the sprays smell of cleanliness and optimism.
I need optimism on this day of Hurricane Irma, chasing her Harvey over southern seas.

Miranda's stylist is named Chardonnay.
You couldn't ask for finer bone structure.
She shoots me a look and says, when am I doing you?
I'm flattered, although all she means is: I need a haircut.
But haircuts aren't my thing.  Books are my thing. 
The lady (black) who sits beside me seems to be inviting conversation.
Shouldn't I chat? Isn't that what you're supposed to do in salons?
My chance to represent my skin color in a better light than it's been representing itself of late?
But I don't feel comfortable in salons, white or black.
I find my page and the pop music fades and there's Kashmir in the '90's,
calloused trigger fingers, mass funerals, gouged out eyes.
Nothing is new under the sun.
Though at one point, weren't we new?
Burying each other with feathers and hair combs,
chipping arrows from stones in the then greener plains of Africa.

I visit history for company and commiseration.
I don't understand the appeal of amnesia, or double-good-unhistory or 
whatever it is that allows for surprise at Dylan Roof,
tiki torch jerk offs, Jeff Sessions and his boss.
My black friends are less shattered.
My white friends are bleaker, more stricken and ashamed.
Those whose families escaped Europe during the last world war may be the worst off,
their eyes dull their voices drowning
as if their grandparents are clutching at their ankles, moaning, do something! help!
We're donating money, telephoning our Congressional representatives, using old 
haircutting scissors to cut posterboard into creatively shaped protest signs.
Smarter perhaps would be to buy those chickpeas I've been meaning 
to stockpile in the basement, 
though the gun nuts are likely to get them in the end.

My daughters are going back to school tomorrow, 5th grade and 3rd grade.
Chardonnay did a great job dying Miranda's tips purple.
Penelope's bangs are a shimmering, peacock blue.





 

Give and Take

IMG_4118I much prefer writing books to marketing them, but sometimes this marketing business leads to very pleasant discoveries, such as Scott Jones’s podcast Give and Take.  I hadn’t been aware of it until Scott invited me to discuss Strange Beauty, and now I am, and have a stack of great conversations to listen to as I conduct my summer relays back and forth from Felix’s school to the girls camp…  I loved doing this interview, and not only because I got to talk about Jason and my first date, but also because Scott immediately got one of the main points of my book, which is that, yes, Felix is disabled, but so are we all. In Scott’s words, “it’s about coming to accept the nature of human limitations.”   Click here to listen!

In Between Times

Ours is the time of fidget spinners,
a-whizz and glittering on palms and fingertips,
of Russian hacking, of polar bears patched with brown
merging into grizzlies in a supple move to stay relevant and alive,
as ice caps crack and ages melt,
heaving cascades iridescent in the sun,
surging past whirlpools of trash and lost manatees.
It is the time of construed tans from plug-in suns,
of super villains in gilt towers, of men as jerky as marionettes
attacking one another in the subway, their curses vile and ancient,
Of quiet folks in the next car, bobbing along,
making room for each other.
It is the time of ancestors in red satin jackets helping me to
parry and thrust, of balance beams and forgetfulness.
It is the time of trees that bloom and sway even as facts are
trampled and the May wind blows cold.

IMG_5151

On Trying to Promote Speechless

When the good people at Cerebral Palsy Foundation asked if I’d host a pizza party to promote last night’s Oscars party episode of Speechless, I was a little uneasy, my inner punk rock voice piping up, warning me against becoming a corporate tool. But I watch the show myself, and enjoy it immensely, as do my daughters, who appreciate not only the hilarity of Minnie Driver as the maniac disability advocate mom, but the intricate and well drawn social dynamics between the siblings. And I do appreciate ABC for airing a raw and irreverent comedy about a family that looks a lot like ours on prime time TV.  And, not the least importantly, I do like a party. So I said yes.

My directions were this: I would get a box of tee shirts and have my guests wear them and I would take pictures of them in their Speechless gear watching the Oscars party episode and “live blog” about it.  What happened is that the tee shirts ended up in a UPS depot in Long Island and we couldn’t watch the Oscars episode due to technical difficulties.  So I dutifully taped the Oscars poster, which did arrive, to the wall, and we pretended to watch that episode while really watching the pilot, which proved to be such a hit that we watched the Alpaca episode, too. 

This picture is probably the best of my promotional attempts: pizza, smiling girls, glossy poster of Jimmy Kimmel.  IMG_5070

But how do you “live blog” once you start kicking back with your friends and drinking a glass or two of wine?  Most of my pictures looked like this:

IMG_5083 2

Feeling my distinct lack of promotional savoir faire, I thought well, I’ll just get the kids to explain why they liked Speechless.  Their words will be better than mine anyway.   My daughter’s friend Amelia gamely stepped up to my i-phone and spoke about how funny Speechless was, and how it showed that “different” wasn’t really that “different”  Her words and delivery were perfect.  But I didn’t capture any of it because I had pressed the “photo” button instead of “video.”

IMG_5091
Amelia, Speechless due to my i-phone incapacity.

Oh well. We will watch the Oscars episode tonight. And in spite of my goofs, I count the night as a success.  Not only did we have fun, but also one of my guests texted me afterwards saying that her son, who is on medication to help him with his own language difficulties, looked up Speechless the moment they got home and started to watch.

Talking with Marlene

One of the pleasures that comes from having started Extreme Kids is that every now and then, some optimistic young woman starting her own project will contact me and ask for my advice or input on what she wants to do.  In this way, I have met an array of people who cheer me with their energy and commitment.

The latest person I have met in this manner, Marlene Jennings, wasn’t asking for advice, but an interview.  She’s started a web project called Make Your Voice Matter, in which she talks to people whose work is aimed at ramping up caring, openness, and creativity in our society.  Marlene’s idea is that we can all birth worthy projects of our own, we just sometimes need a little inspiration.  Here she is, interviewing me, for the third episode of her show.  Good luck Marlene!