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.

Saturday, December 10, 2011

50,000 and Counting

I celebrate surpassing 50,000 hits with, of course, a repost! While I did not receive this particular piece of mail this year, I think of it every time part of who my child is is twisted into becoming someone else's feel-good charitable act of selflessness - more often this time of year. I appreciate acts of generosity and kindness and the intention behind them. But we have two happy, healthy children living full lives in our home. There is real need out there. One needn't search too long to identify and address it.

Readers, thank you for your vists and revisits to Farmer John Cheese. We love having you here, 50,000 times and beyond.

Jarring Mail, from October of 2009:

I opened a seemingly innocuous piece of mail today and was smacked in the face by it. No, it was not an evaluation or assessment implying my clever 6 year old is really only a toddler developmentally. Nope, wasn't results from medical tests that portend painful procedures in her future. Wasn't even a copy of an IEP written by someone with an entirely different interpretation of every decision made during the meeting. None of that.

It was an offer. A gift. A helping hand. A helping hand that nudged me away from all points of reference I currently hold with regards to my daughter's place in the world.

It was a note from a respite agency we are not currently active with as we have no respite services at this time. But we are still "on the list" and so we get mail and newsletters.

Filled with graphics, fancy and fun fonts, and lots of exclamation points, this mail had 2 parts. Page one was to inform families to call the agency and let them know which kinds of books our child with special needs prefers. At some point after that, we're to come to the agency office to pick up books donated by Barnes and Noble.

The second page asked us to fill out a form that would be posted at local corporations leading up to the holidays. The employees of these corporations would select a form (based on arbitrary things like name, maybe - age, gift ideas) and shop for one item listed on it. We did this where I worked - we called it the Giving Tree. My assumption was that we were giving to those that could not otherwise obtain these gifts. I thought we were fulfilling a need.

But I am confused. My children receive books and toys for the holidays already. We are blessed to not count this among our worries, however modest our giving may be. We have shelves of books, library books from school and from our community library. We have toys and a swing set for our girls. We have enough to eat and can pay our mortgage. To paraphrase, we have enough so that we do not want, and we are able to give others.

As I'm reading through this act of generosity, of charity, I am not grateful. I don't feel prideful either, though it may sound like it. I am dumbfounded that my child is seen as unfortunate and in need. There are children that are, but my child's disability does not automatically put her in such a category.

When I am in the world, I don't see the pity anymore unless it is laser focused on us and articulated as such. I take Addie to school and the dynamic that would make her less fortunate than the other kids, in need of toys, books, food, attention - whatever, is just not visible to me. When we are in public, I don't see cocked heads wishing us mercy, I don't feel a hand patting mine, offering sympathy. I know I am somewhat selective about what I choose to internalize, but those things must be more present than I realize.

If Addie showed up at one of these corporations that will hang the gift tags for employees to grab and shop for a child with a disability, if she bobbed her blond head through the cubicles, if she waddled through, making her happy noises, operating her communication device to find out where the candy jar is (all workplaces have candy, kids know this), if she fixed her eyes on a department director and flung her healthy, squinting smile with a side dish of chuckle, would these people feel good about where their gifts of toys went? Would they feel like they made an impact in an otherwise toy-free, dreary life? Would they feel their part in the lives of those with disabilities had been played, that they can tally that up and cross it off the to-do's?

Probably not. I hope. Again, I don't think my bemusement comes from pride or lack of gratitude. The gesture is a beautiful one and certainly needed in these times all over. But I am confused that my child is automatically a charity target simply because she has a more complicated medical history than many kids, because she thinks, moves, talks differently than many. It feels somehow redundant to me, superfluous, to give my child, who is capable of making her own contributions to those in need, gifts of material things.

This mail reminded me of the reality that often our kids are seen only as receivers, not as givers. Whether this involves pity or a desire to "help" or not is an individual thing. I have had other parents at my older daughter's school comment on how the needs of the kids in special ed negatively impact what their own typical child gets at school, sarcastic comments about these kinds of kids being the "stars of the whole school." If my child is seen as a receiver or someone held up as more deserving than other kids, the gifts she really has to offer herself cannot be recognized, cannot be witnessed, cannot do the work of healing and bettering she intends for her talents to do, as everyone intends their contributions to society to do.

The form from the respite agency asks for a couple options of gifts under 25$, from which the corporate worker will choose 1, to be distributed unwrapped to the parent (so that the parent may use them as the gifts from themselves, if desired) in December.

I know that there is mad desire to give out there, to share - to give effectively, to make something better for someone. It's where this idea of giving toys to Addie and others with disabilities came from, from kindness and compassion, from wanting to lead a life of purpose. And I deeply appreciate it. But I offer an alternative gift tag wish list to ensure the gifts have definite impact on Addie.

Respite Agency, can you post it at ALL corporations, community buildings, schools, retail establishments, parks, entertainment venues..., please? All options listed are free and low to moderate effort. They will not be used as my gifts to Addie, but must come directly from the giver. By giving any of these to Addie, they are automatically given to others and come back to the giver in kind. She does not need these gifts by December, but throughout her entire life, any place, any time. All places. All times.
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Name: Addie

Age: 6

Gift idea 1: See me. Don't see me only in terms of my disability. Witness me for who I am and decide whether or not my differences are a tragedy based on how I carry them, how I use them, how important or unimportant they seem to be to me in what I expect from the world and what I have to offer.

Gift idea 2: Hear me. I communicate constantly. I understand that you need to get used to how I do so. I will be patient with you. Try to hear the music I move to. You might find it more similar to your own than different.

Gift idea 3: Let me help you. I can. I am capable of filling a need you may have, whether it's a social one, a practical one, a paid one. I am 6 now, but I intend to do work that I can feel good about when I'm a grown up, to live as independently as possible. If you see me now, if you hear me now, witness my talents, you might just want to hire me, be my roommate, hang out with me...later.

Thanks in advance for your gifts. I can really use these.
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