Friday, January 30, 2009

Erasing the Lines, Even as I Draw Them

I’ve been thinking about civil disobedience lately with the recent inaugural event, the swell of pride in the air holding the promise of Dr. Martin Luther King’s words like gifts, like baby birds in the nest.

I’ve been thinking about Gandhi, rolling the word Satyagraha in my mouth, round and round. Satyagraha, the name of the passive resistance movement waged against the British until India won its independence in 1947. Satyagraha, from the Sanskrit words for truth and obstinacy. Say it: Satyagraha. You can’t help but feel its quiet intransigence, its power.

We’re did a short block on Indian culture in our homeschooling lessons last month, reading about Gandhi’s life and his work. We’re doing a short block on African American culture this month. I planned it so that our stories would coincide with the start of the Obama’s presidency; I didn’t let myself think there’d be any other outcome.

We just finished reading the Enki story about MLK and this morning, I took my son, Fluffy, to his first real play in a real auditorium, the room dark, the seats plush, the actors larger than life on the stage before us. Not like the many puppet shows and picture books enactments we’ve attended, sitting on our dusty coats, toddlers wandering around, punctuating the air with sticky lollipops.

Fluffy didn’t want to go. The idea sounded good when I first mentioned it, the thought of this future thing as abstract and fleeting as a puff of breath that disappears in the icy air of winter. When it came time to leave, he collapsed to the kitchen floor, his own passive resistance. This happens when he feels sad or worried, when answers are disappointing, when transitions lead to places he’s not sure about. It’s part of the Aspergers mixed with dysregulation from sensory confusion and after four years of poking my stick in the dark, I’ve finally found a couple of strategies that can usually get us out the door with relatively good humor.

He liked the play, sitting through the whole hour even though some of it was hard to hear, lots of information spoken too quickly. But those words, King’s words, how could one not love those? I cried, of course. I always cry at things, Bambi, WallE, Gandhi, anything that ends in that ‘e’ sound, MLK-e, Obama-e.

Last night I stayed up very late watching the 1982 movie about Gandhi starring Ben Kingsley and what struck me on this viewing was that Gandhi believed in fighting. Fighting. King, too. They believed in revolution, in inciting action, in a complete and utter shift of consciousness and system, in unrelenting, non-violent disobedience.

Hate the sin. Love the sinner.

Fluffy’s been taking a circus class on Saturdays. He goes with his dad so I’m not there to see what goes on, to coach or pull the teacher aside before and/or after, to walk that line between holding the group’s interest and advocating for my son’s wellbeing and success.

Apparently, a parent has expressed concern about the class, about Fluffy’s behavior, about her own daughter’s safety. When I read the email, I got that feeling in my body I’ve gotten many times over the years right before being told that Fluffy has to leave, like the very first time when he was kicked out of preschool at three. It's an intertwining knot of defeat, sadness, frustration and fury.

I know this parent has every right to be concerned about her daughter; she’s advocating too. But she’s typical. Her daughter's typical. She’s in a class with a child that’s not typical. And I can’t shake the feeling that she, the mother, simply wants the non-typical child to go away or get typical or suck it up enough so that all the non-typical stuff can wait until after her little girl skips down the hall and climbs into her car seat.

She doesn’t want to deal with anything hard. But guess what? Hard is part of life. And hard stretches. And hard teaches. And hard softens, when it’s in contact with the proper elements, when the touch is gentle, curious, warm, creative.

I’ve never gone in for the big Fight Against Autism but I was instantly recruited to the Fight For My Son’s Happiness from the first moment I held his glorious, sticky little body.

So I’m back to thinking about civil disobedience, about the things that need to change, the beliefs, the attitudes, the divisions between us and them.

I want to be the change I wish to see, I want to walk my dream into being, I want to extend goodwill and still mount an unrelenting, peaceful attack on the tides of ignorance and fear, erasing the lines that section us into camps, even the ones I’ve drawn here.



  1. Your post hits home.
    When we adopted my son and created a dramatically visible mixed-race family, I thought our problems would be along the lines of racial misunderstandings and outright racism.
    Now that the same son has come to develop a whole host of special needs, I have come to realize that the real battle we face is mistreatment due to ignorance about disabilities.

  2. yes, advocating for them becomes a whole different thing when they have special needs. Ghandi is one of our favourites as well, so much so that we have that saying painted on to a wall in our house.

  3. Kyra, what a beautiful post. It really hits home here too, although I've never put up the big fight. I withdrew The Kid (8, w/ Aspergers & ADHD) from Karate at the first sign of dissent among the typical parents. I just wasn't up for it. To many, it may just sound like taking your child out or keeping him in an extracurricular activity is just scheduling a day, making day to day choices, but I do see it more profoundly, as you do, on a parallel to a civil rights struggle.
    Can't wait to read more about you and Fluffy.

  4. We were so lucky to have a neonatologist that prepared us for "the fight" for our son's well-being. Little did we know that those first three miserable months in a NICU would be the only ones that Ben was 100 percent completely accepted as a whole person. Kyra, you always have a partner here to help enlighten the rest of the typical world.

  5. Kyra, this is a beautiful essay. Thank you. I'd be proud to stand by your side, to fight the good fight, to erase the lines.