Wednesday, March 7, 2012

She's Not Kidding Around

Off to school with her clipboard, pens and pledge forms.



Spread the Word to End the Word

Thursday, February 16, 2012

List



Cracking through a full agenda this week I did, in fact, get one thing done today - my Hopeful Parents post!

Read it here:
List

Check.

Monday, January 16, 2012

Ought To Be



My Hopeful Parents post day fell in a good place this month and I am grateful.

Ought to Be

Wishing you both peace and the power to change something - today and every day after it.

(Full HP post found below)

Ought To Be

"All I'm saying is simply this, that all life is interrelated, that somehow we're caught in an inescapable network of mutuality tied in a single garment of destiny. Whatever affects one directly affects all indirectly. For some strange reason, I can never be what I ought to be until you are what you ought to be. You can never be what you ought to be until I am what I ought to be. This is the interrelated structure of reality." Martin Luther King, Jr.

It doesn’t take long. As parents of children with differences, we tend to cut to the chase rather swiftly once we’ve understood that we are talking to one who knows this way of living. I ask bolder questions, I lay more of my own truths on the table, eye contact is extended and personal space contracts slightly. While we tell ourselves it’s because this person is a “safe” person, this is one who gets it; I believe there’s a bit more than that. For me there is, anyway. Every single stone must be turned over and examined. I cannot afford to leave any as they are. It would not be fair to her.

And each person I meet with perspective on disability is such a stone.

I ask, I answer, I wonder if this other person holds a clue, a key. Will this other mother put something in words that shed enough light for me to act? With this dad describe something in our lives in such a way that clarifies for me my next move? Do they know someone who knows someone who I should talk to? Will their counter to my view set me on a new, more direct path?

Opportunist, yes. Not void of compassion, understanding or appreciation for mere connection. Not unsympathetic or single-minded or lacking reciprocity. But still. The stone must be turned.

It must be turned because the vision we have formed for her is not one of staid, smiling subsistence. Her character, her strength, confidence and humor, her clear preferences and affinities, her complexity and wit, her superpower of creating the circumstances she wants, all of that and more makes the too common projection for those with intellectual disabilities – a life of adult daycare or superfluous workshop “work” for pennies, possible over-medication, once per week bowling, wide open hours of nothingness, endless receiving, gaping caverns where the act of giving should be, a life peppered with patronizing pats on the hand meant to evoke spiritless smiles – who she is right now makes that life absolutely unimaginable, impossible for her.

She requires more simply because she is human, yes; because to be a full citizen of the planet means to connect to and contribute to the rest of humanity. But I am often surprised when I am faced with description of a young child with differences in ability similar to my daughter’s and I am told with 100% assurance that this child will never be independent to any degree, will never live on her own, will never engage in work that means something to her. What then, I want to ask, will this seedling who is already excused from a life of intention, what will she actually do as an adult, then? What will she do as a child, for that matter, if there is no trajectory, no vision, nothing to prepare for? How are hours of childhood spent if not in laying the foundation for a self-designed future - to the extent possible - through social, ethical, functional and academic experimentation?

What ought this child to be right now, then? As she grows?

My daughter will not “be my constant companion,” as is so often offered as a consolation by strangers when they observe the alternative communication between she and I or coupled with their shocked reaction upon hearing the answer to their inquiry about her age. She will not, in fact, “always be with me.” “May God bless you for your trouble,” they tell me with heads tilted to the side, toppling with the load of generous intention. Alas, they have it backwards. It is not her life that is contingent upon my desire for companionship, but rather my daily occupation that is contingent upon what both my daughters require to ensure they lead the healthy lives they intend to lead as adults. May they be guided in their choices, for I have long since made my own.

Go ahead; ask her what she wants to be when she grows up, as you might any 8 year old. Though it may take her a while to express it and you may lack the ability to understand her response, she has an answer. She knows she ought to be something pretty amazing.

My questions will not stop. Stones will not cease being turned. Trees will not cease being shaken. Both of my children are destined for feats untold, as your children and your neighbor’s children are. An obstacle for my child is an obstacle for your child. An obstacle for your child is an obstacle for mine. “Whatever affects one directly affects all indirectly.”

May each of us see where potential greatness on any scale is being thwarted, may we call oppression what it is. May we speak against it. May we act to end it.

Wishing you a provocative Martin Luther King, Jr. Day.

Saturday, December 17, 2011

Factory Axis

I was up late, late, late last night, at Hopeful Parents, decorating a page for you all. Sadly, I hit publish at 12:01 and missed my scheduled date of the 16th.

Come back to my Christmas Eve in 1991 at:

Factory Axis

Peace, joy and new adventures to you for this holiday season and into the new year.

TH-E (aka: FJC, Insideout510)

Factory Axis

The Vespa swayed and popped as I gripped the seat under me. My hands were wet from rain and mud splashing back up. I didn’t articulate the question in my mind, but it was there: what the hell was I doing on a motorized scooter on Christmas Eve on country “roads” in Taiwan? As my wet hands slipped one too many times, I realized I’d have to hold on to the driver. I reached around Tom and gripped the edges of the pockets on his leather jacket. The beds under my nails stung white hot from pinching tight in such damp cold.

I didn’t know much about Tom. He was of Irish heritage and called Chicago home. I’m not even certain how we met, beyond realizing that two Americans, and Midwestern Americans at that, in the northern part of the island known as the Republic of China, Taiwan, we were bound to meet eventually. Nor could I conjure up much of a story as to why he invited me on this Christmas Eve junket, or why I accepted the invitation without thought. I’m sure we were both just trying to make the best of it. As two people thousands of miles from home on our own by choice, I think we were both inclined more towards yes than towards no by nature.

As we bounced through the rough roads and puddles of unidentified liquid, I planned how I would not like it when we got there. It could not possibly be good. With each jerk of my neck, I staged my disgruntled judgment of our destination. I said yes, but it still felt somewhat under duress. It’s a church, after all, and I haven’t been very churchy since I exited my family-mandated 12 years of Catholic school years back. And while I’d gotten to know the Taiwanese during my year and a half as a teacher there, the language and culture to some extent - this would be a Filipino church we were headed towards, per Tom’s invitation. The entire mass would be in Tagalog. I knew I would not understand a thing. I anticipated thinking of my family, of the 7,383 miles I was away from the only kind of Christmas I knew. It was, at least, a Christian church and would be closest to the Christmas Eve masses I’d observed at home - a far stretch from the strange pageantry of Christmas celebrations happening among the Taiwanese, who for the most part do not concern themselves with acknowledging the origin of the holiday as the foundation of Christianity.

In my mind, I was not home and so it could not really be Christmas.

We arrived at the modest chapel in the middle of bleak fields and marshes barely made out in the darkness. Tom parked the Vespa next to a short row of others, not a single car to be found. Because of this sparse array of transport, I anticipated a drearily scant congregation. Tom noted the skepticism on my face and informed me they do not have cars and only the very wealthy have scooters. Most would have walked from their “homes,” tonight, through those fields and marshes he pointed to. I felt the word “homes” in quotations in the way he said it, but we talked little, so I did not question.

He pulled the door open to a din and a light that have not been matched for me in the 20 years since. The ornate pews were packed. The aqua colored paint on the walls cracked, but the alter and carved stations of the cross were pristine. No single body filling the pews was still for more than a moment. The band at the front warmed up, but it seemed movement was choreographed to their haphazard sounds even still. Everywhere smiles, handshakes, pats on the back, hands held, hugs prolonged – a joining of person to person, person to next person so graceful and constant. The level of genuine affection lead me to guess it might be one large extended family. Except that there was not a single child in the church. The entire congregation was made up of adults ranging in age from 25 to about 55.

As Tom and I found our spot, the band opened the ceremony with nothing I’d ever heard in all the Christmas Eves I’ve celebrated. It appeared to be a sort of folk/rock/bluegrass approach to the traditional Christmas carols I knew, but in a language I’d never heard. The musicians were so earnest and so enveloped by their craft, that for brief moments, right at this opening song, I’d forgotten about my quest to disapprove of this experience.

The spoken rites of mass ensued and in its subdued progression, I was released to mourn what I missed. I missed my family, my own church from childhood – if not from faith, then from a cultural adherence. I missed my family and the thought of the sugary buffet of sweets that certain members of the family would be laying out as the rest of us were at mass. I missed the firm tweed shoulder of my dad’s suit jacket against my cheek as I leaned, inhaling the incense from our pew as I dreamed of the chaotic cadence of a holiday at home with my mom, my dad and my 9 brothers and sisters.

Tom’s pinky showed up in my view as his hand waved hesitantly in my range of vision. I was weeping and I did not know it. Tom and I did not know each other well and perhaps we would be friends one day, but we weren’t yet. What was he to do with this sobbing girl that he’d brought into this community that he understood, but that she did not? He waved to inform me that he was my host, my connection between where we were and me, and that I was audibly crying, and that that was not very cool.

The band began again. In an effort to rally, I leaned a little closer to Tom and whisper-asked about his family. I came to find it was also large. I thought about how much my sisters would enjoy the music, my big sisters who formed all of my tastes in music, literature, people… in everything. If only they could be here. I know they would support a love for it.

At some point in this mass that was surprisingly predictable in its order, unpredictable in its spirit, I stopped thinking about the Christmases that were, and thought about the Christmas that is.

As the observance ended and we milled out, Tom introduced me to a few that he knew. We were of note from the start as the only non-Filipino participants, though it seemed to make little difference. As Tom’s Mandarin was better than mine, the common language between us and our hosts, he made arrangements I knew nothing about.

We got back on the Vespa and continued on through the marshy dark, following others with scooters, leaving many to walk the same roads behind us. The only explanation I got from Tom, which I apparently accepted was “We are invited.”

Eventually we arrived at an industrial building. We entered among the smaller group who rode with us through a back door. We walked up two flights of stairs past unwieldy machinery that confirmed my suspicion that the building was a factory. Up on the 3rd floor there was a subsection built off with walls and a ceiling, like a little loft in a huge open warehouse, a hive in a tree. One of the young men, about as tall as I am, turned to me as he opened the door and said in English, “Home.”

Burners were warmed up, chairs were unfolded, gifts were procured, stories were told. The walkers arrived and left their muddy shoes at the door. In a stilted, broken progression between what Tom already knew and the stories our hosts now told us, I came to understand certain things.

The group of 20 or more that lived/worked in this factory all had families at home in the Philippines. Many were highly certified and educated, but could not make a decent living in their home country. They left their families there and came to Taiwan to work and live in the factories to send money home. Some were the fathers, some the mothers, but all had people that they loved and supported 700 miles away. They lived on cots and electric burners here, fueled by 10 hour factory work days and envelopes home filled with more money than they could make if they lived with the beloveds they made this sacrafice for. A few talked about how they came to the decision on who would leave to work here, mom or dad.

And yet they smiled and celebrated and welcomed us. The honor of guests was palpable as guitars were unveiled, music played, gifts appeared, food offered. I sat on the edge of a cot as a woman so proudly showed me the photos of her small children on the wall behind us, told me in her best English that she have enough go home 1 year and go back be pediatrician and mom.

The message came across strongly that they believed they had something in common with Tom and I as English teachers from America on a visa, away from our homes. But the truth was that I got paid 3 times as much as they did for half as many hours and I did not have a family to support. I lived in my own room in the nice house of a Taiwanese family. I was young and foolish and was there by choice, not obligation. They knew this. I knew this.

But they didn’t put it between us, they chose to connect based on the few things we did share. I’ve never been given a gift as generous, as meaningful, as useful.

We stayed late. We drank whisky. I laughed out of contagion, for the gratefulness and celebration in that factory/makeshift home was not less than, not equal to, but greater than what I understood Christmas Eve to mean.

I don’t know what happened to Tom. I know he was a friend for as long as I was there. I still have some cassette tapes he made for me. My kids will never meet him or my gracious hosts from Christmas Eve in 1991. But a crucial part of who I am as a parent, who I am as a hopeful parent who was, at one time, certain she would not be game for this disability parenting ride, comes from that swampy factory Christmas Eve.

Peace and joy to you, no matter your circumstances.