Tag Archives: change

Breaking the silence: why I’m asking you to be an advocate for children like mine

I’ve noticed that when I write posts about our life with Lucia and I tell you about our family’s journey in getting to know, understand, and love our child with disabilities, we are met with such love, encouragement, and support.  These posts have been such a deep point of connection for me with all of you because they show me how much you value children like Lucia, who have special needs.  They encourage me that you see value in difference and that you understand some of our challenges, delight, and struggle, and this is no small thing.

But I’ve noticed something else, too.  

I’ve noticed that when I post a video to my Facebook page showing Donald Trump mocking a reporter with a disability or an article that explains some of the challenges people with disabilities face if Medicaid or Obamacare are to be cut, or even an article that questions the President Elect’s secretary of education nominee’s understanding and value for the federal government’s protection of the civil rights of people with disabilities, there is no such outpouring of love and support, no litany of encouraging comments or outcries for justice.  Save for a few courteous likes, in fact, you are mostly silent.

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Photo credit.

So with sincere confusion and heartache and much trepidation, I want to ask, friends, why the silence when it comes to these issues of justice and provision and daily life for people with disabilities?  Is it because we remain deeply divided in this country and that divide extends to the question of how best to care for, empower, and support people with disabilities?  I guess I understand that.  We are divided in this country about so many things.

But I want to tell you something–the main reason I began writing Lucia’s story this past year is because I realized that it was so worthy of being shared and that she has so much to teach us.  But somewhere along the way, I also realized that when I write about my daughter with special needs on this blog, I do so in an ardent effort to bridge that very divide between us.  In fact, I write Lucia’s story (sometimes gingerly and ambivalently) precisely because she doesn’t and she may never have the words to tell it herself.  I write Lucia’s story because so many people with disabilities don’t have the hands and feet or the energy to call or march or lobby or fight for their own rights.  Of course many of them do, and that is why we have federal legislation like the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) because so many people with disabilities worked so hard to ensure that such persons are not denied basic rights to citizenship, employment, and education, but the ADA came along only in the 1990s and the IDEA is still imperfect and under threat even today.

There is so much to be done.

We live in New Jersey because when it comes to children with special (medical) needs, the NJ state program is one of the best around.  But we lucked into that with Lucia being born here rather than in say, Indiana or Texas.  And we can’t move out of this state because so few states offer the comprehensive skilled nursing care and Medicaid-sponsored secondary insurance that Lucia’s needs require, and these are the services that allow our child to get the care she needs so both my husband and I can work.  In so many other states where benefits are scant, one parent must stay home, and even when they receive benefits, it is these parents’ hard work that actually saves the state and the federal government hundreds of thousands of dollars a year because it’s way cheaper for parents to care for their kids in their homes than for governments to institutionalize them.

But these are all best case scenarios–yes, that scenario in which you must quit your job but you get some benefits and you get paid minimum wage to care for your medically fragile child in your home, or our scenario where you have such great benefits but you’re literally trapped in the state, you can’t consider other jobs outside your state or a home closer to family because those states don’t have coverage–those are the best case scenarios.  The worst cases are states that have so substantially cut their Early Intervention or Medicaid programs that families can’t afford these very expensive services that their kids need to grow, or worse, survive.  The worst case scenarios are ones where children still sit idle in classrooms with no appropriate or adaptive equipment because states don’t have the necessary funding or won’t put it toward the challenges of kids with special needs.  The worst case scenario is a country that becomes so divided that we fail to care for these kids and their families at both the federal and state level, a country wherein we’ve forgotten their rights and thus denied their humanity.

So when you hear politicians threatening to cut Medicaid and deny federal laws that protect children with special needs rights to education, will you remember our family and other families like ours and resolve to stand with us and not be silent?  Will you realize and acknowledge that so many families who care for people with disabilities are currently scraping by with so little (nobody gets rich off of disability), and cuts to federal and state programming make it hard for their parents to work, hard for their kids to go to good schools, and hard for such children to get good medical care, supportive seating that helps them go places, and braces to walk, run, and stand?  (There is still no comprehensive mandate across this country to enable these families to live sustainable lives–we’ve left that to the states and so many families are living the worst case scenarios everyday.)

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Lucia smiling with her father.  My photo.

These are the things I’ve perhaps neglected to tell as a part of Lucia’s story, because they’re personal and painful and arduous and inglorious but not any less true.  But if I can’t humble myself to speak these truths, and if this part of being different goes unknown in this country, then I’ve become complicit in this silence as well.

So thank you from the bottom of my heart for loving our family, for supporting all of us, and for sharing our story.  But most all, thank you for being part of a less raucous but no less valid and valiant movement in this country to seek understanding across our differences.  Thank you for considering this challenge to advocacy–the charge to love us by lifting your voice on behalf of my family and others and to seek the best for all people, especially people with special needs.  When you think about it, beyond Donald Trump’s mockery and Hillary Clinton’s platform, people with disabilities were again surprisingly absent from all this political jarring and sparring and posturing: where was the outcry against police violence toward people with disabilities (#criplivesmatter), or the righteous indignation over the exclusion of disabled people’s rights from the progressive Women’s March platform?

Let’s change this country, friends.  They’re going after kids like mine, and it’s not right.  

Let’s break the silence.  One phone call, one story, many voices, together.

P.s. If you’d like to get started today,

  • Please call your Senator and oppose the appointment of Betsy DeVos for Secretary of Education and Jeff Sessions for Attorney General.  You can read here and here why we don’t trust them when it comes to protecting our children with disabilities.
  • Sign up for news and alerts to fight for disability rights.
  • Talk to a family you know about their struggles and advocate on their behalf.
  • Carry a sign at one of the marches this weekend that makes it clear that you value and support the rights of people with disabilities–let’s make these marches truly progressive and inclusive!

 

 

 

Speak your truth (the whole truth), America

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Plymouth, MA.  All photos by Evan Schneider.

Last night, after yet another independence day celebration, yet another weekend of flags, festivities, and fireworks, I read a rather apologetic post from one of the new co-moderators of the PUCSA.  In it, she writes that although she doesn’t want to be a “Debbie Downer,” on the fourth of July, she is also painfully aware of the transgressions of our nation, especially with regards to slavery and civil rights, and our present problems like gun violence, torture, pollution, and racism.  She writes that while she will celebrate, she recognizes that others will grieve.

But I say, don’t apologize, Rev. Edmiston, for speaking your truth.  

We need voices of dissent in this country, even as we have those who cry out (and I would remark unapologetically, as well as uncritically) to “make America great again.”  We need  a fuller appreciation of our tattered history to find a more purposeful present.  In our zeal for patriotism, we often forget that our founders, flawed as they were, were hearty dissenters!

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Plymouth Rock.  

Why is it that we in America today are so afraid of the dissenters?  Why, despite years of good and bad, do we espouse to have all the answers?  Don’t we know that what makes America great is insight and innovation, change and adaptation, that can only come with critical reflection upon our very mistakes?

My truth this morning is that love is not enough.  We need justice.  We need change.

We need change because it’s not just in Medina and Baghdad and Dhaka and Istanbul but everyday, sometimes twice a day, that gun violence on American soil intervenes to take the lives of young men, mothers, and children.

We need justice because faith has been compromised; justice would choose a fast that breaks the chains of poverty, discrimination, and sexism, chains that we often prefer not to see even in our very history of liberation and our present struggle.

We need truth, because real truth, the ugly, full, challenging, meaningful, both star striped and tattered truth, does and can set us free.  Dissenters are part and parcel of that truth.

What is your truth to speak, America?  How will you go on, despite, in spite, to fight injustice?

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Native American protest at the Massasoit Indian Statue up the hill from Plymouth Rock on Thanksgiving Day, 2012.

In the words of the poet, Langston Hughes,

O, yes,
I say it plain,
America never was America to me,
And yet I swear this oath—
America will be!

Out of the rack and ruin of our gangster death,
The rape and rot of graft, and stealth, and lies,
We, the people, must redeem
The land, the mines, the plants, the rivers.
The mountains and the endless plain—
All, all the stretch of these great green states—
And make America again!

 

What I know about God

Cemetery in Monmarte, Paris, France.  All photos by Evan Schneider.
Cemetery in Monmarte, Paris, France. All photos by Evan Schneider.

It is written that “Jesus Christ is the same yesterday and today and forever” (Hebrews 13:8), and that “I, the Lord, do not change” (Malachi 3:6).  

Though we often feel as though it is so difficult to know anything definitive about God, it is we who are washed about like waves upon the shore, and God who remains, faithfully, the same.  It’s amazing that this journey of faith with God, this process of discovery, is one in which God remains fixed, stable, and still, as we sputter about, grasping for a glimpse.  We become dizzy with our movements, forgetting that we not only grasp for God, but God is ever grasping after us.

In Micah 6: 3, a perplexed God cries out to the people, “O, my people, what have I done to you?  In what have I wearied you?  Answer me!”  This verse and those that come after it remind me that we have such a gift in our God, because this is a God who desires a relationship, above all else, with a bunch of sinners, and that we need only accept the invitation to, “taste and see that the Lord is good” (Psalm 34:8).

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Saint Chapelle. Paris, France.

My friend and colleague, Erin Lane, recently published an article on Q about knowing God, a post in which she tackles the problems with gender exclusive language, and writing that, “God is more than, higher than, fuller than our human thoughts and ways of gender. I’ve come to believe that we worship a gender-full God.”

Erin’s idea of a “gender-full God” blew my mind.  

Sure, I believe in the importance of inclusive language, but I felt as though I learned something radically new about God as I read through her journey toward knowing God more fully.  As I reflect on her journey and my own, I realize how important it is for us to share with one another what we know to be true about God.

The view from Sacre Couer, Paris, France.
The view from Sacre Couer, Paris, France.

Maybe God isn’t changing, but as we learn more about God, as we grow nearer to God, we certainly are–we are becoming more aware of how God can be so fabulously constant and so wonderfully unpredictable.  We become more aware of how God loves us, and how that love can be both constant and radical.  And we find that while we may spin in circles, these circles can take us toward deeper and more profound intimacy in the greatest relationship of all time.

As I’ve reflected on who God is these past few years on the blog, here are a couple things I know to be true:

1.  Our God is a God of possibility.

2.  God is the God of all of us.

3.  Our God is sturdy.

4.  God is the God of abundance.

5.  God sometimes works behind the scenes.

6.  God laughs.

7.  God dreams.

8.  God is good.

9.  God is the God of challenges.

10.  God lives both inside of us and outside the walls of the Church.

What do you know about God?  Who is God to you?

Epiphany: Pondering it all in our hearts

Christmas has come and gone.

In this season, paradoxically called epiphany, we ask our neighbors, “how was your holiday?,” we un-trim the tree, dismantle the decorations, put away the nativity, and resolve to return to our regularly scheduled lives.

But what are our regularly scheduled lives and how do they fit with the violent breaking in of our God in advent, the not so sterilized versions of that stable birth, a season of unadulterated joy, and a baby savior who takes away the sin of the world?  Isn’t the meaning of epiphany, “the manifestation of God,” enough to send us on grand pilgrimages like the wise men and change us forever?

This past advent, our pastor preached passionately about the need to take the nativity off the mantle, to become acquainted with a rather inconvenient and culturally inappropriate pregnancy, the messy squalor of the stable, and welcome this paradoxical savior and all his rupture into our neat, little worlds.  It pains me that we, who have experienced the greatest hope and joy of this season, can think of nothing to ask our children but “what did you get for Christmas?”  How have we really taken the nativity off the mantle if our lives look the same in this holy season of epiphany?  And how can we welcome epiphany if we resolve to go back to our regularly scheduled lives?

In this holy season of afterbirth, joy, and wonder, I encourage you to stop and reflect on the gift of a savior.  I encourage you to ask not just about travel, family, and presents, but the epiphanies that others have experienced in light of the grace we have received.

As Mary pondered all these things in her heart, so might we ponder how Christ has been reborn in us, and how because of this, 2014 will never be the same.

A preface of sorts

I’m learning that writing a dissertation is all about excess.

A botanical garden outside of Boston.  My photo.
A botanical garden outside of Boston. My photo.

You write and write and write (or at least this is the way it has gone for me), without any sense of the whole, blindly, and at best, faithfully, and when you generate enough material, things start taking shape.  You’re no longer writing so much, but sifting through material, arguments and descriptions, and assembling something piecemeal, slowly and methodically.

It works best when there is excess, but that’s hard to accept when you’re first getting started.  You want it all to fit.  You want not a moment to be wasted.  But not everything will make its way into the larger work.  There will be pieces that stand alone, and pieces that are ultimately set aside.

Here’s a bit of excess for the moment.  Something I wrote months and months ago and finally came back to, and liked, but who knows whether it will make it into the dissertation.

Consider it a sneak preview!

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I remember sitting with my Chinese professor in his office in Princeton explaining my intent to go to Southwest China to study foster families.  When he heard Guangxi, Nanning his ears perked up, and he bellowed a guttural laugh, “I don’t even understand a thing they say there, ha!  Good luck!”  I remember not only the cacophony of languages and accents upon touching down in Nanning, but the pervasive smell of mildew, the sea of e-bikes stretching across the broad avenues, and my first forays through neighborhood markets searching for foster mothers alongside a friend who swore they could be found.

E-bikes in Nanning, China.  Photo by Evan Schneider.
E-bikes in Nanning, China. Photo by Evan Schneider.

I met not a single foster mother that first summer.  Instead, I met many people, all Chinese, who told me emphatically that they did not exist.  Most people who I met in Guangxi apologized obsessively for the “backwardness” of their region, and they urged me to go somewhere of more importance in China.  Chinese professors of anthropology wondered how what I was studying could be called anthropology if it did not concern the Zhuang minority culture for which Guangxi was famous.   They misunderstood the focus of my research to be international adoptions, because as they and many others stated, there was no Chinese culture of adoption.

But in March of 2011 all of my fledgling questions brought me to an unassuming concrete office in the middle of the city, where a small NGO staff assembled and told me they supported hundreds of families in Nanning and thousands outside of the province to who took orphaned and abandoned children into their homes.  That April, in a nearby city orphanage, an elderly woman with a kind smile told me how she’d started foster care projects in Guangxi in the early 1990s out of necessity, poverty, and concern.  Guangxi, it turned out, despite the naysayers, was at the center of a disperse, yet expansive foster care movement.

When you’re sitting in classrooms and carrels imagining anthropological fieldwork, you can only think in systems and power and theories.  It was no different for me, and despite the draw of foster mothers’ joy and pain, I imagined a China in which movement of children from public orphanages to private homes represented an unprecedented receding of the state from private family life.  I conjured a sophisticated state, modern cities, and rapid social change.

Fishing alongside the Yong River in Guangxi, China.  Photo by Evan Schneider.
Fishing alongside the Yong River in Guangxi, China. Photo by Evan Schneider.

But instead what I found is time nearly standing still in the cinderblock homes of foster families, whether they lived in the capital city or off the rice paddies between mountains where people plowed with oxen, a rickety tool, and their own two hands.  I learned that despite the narratives about the strength of the Chinese state in my textbooks, power was always locally negotiated.  Despite the myriad of books on China’s urban centers, the people of Guangxi are, as Fei Xiaotong wrote decades ago, firmly “of the soil.”

And I discovered that despite the literature on families and family life in China, nothing prepared me for the sudden expressions of emotion I would encounter on the inside—the secrets people confided in me, illegitimate children, illegal adoptions, and how parents clung to me briefly and then physically pushed me away.  So powerful and yet fleeting were these displays of emotion that I often wondered whether I imagined them, or if they did occur, what it was inside of me or between us that elicited such rawness, even as I relished the intimacy.  Even if you know in your heart that you are dealing in the realm of truths and the kindred, there is, for the anthropologist, always the concern for what will someday make it onto the page and into the readers’ conscience.  And the fact that your informant is never so concerned with representation in these real moments, but only concerned with living itself, that’s what always gives me a sinking, slithery uneasiness.

A foster mother and her son in Anhui, China.  Photo by Jason Fouts.
A foster mother and her son in Anhui, China. Photo by Jason Fouts.

I once read a warning from another writer about the tendency to make the people we meet and learn from and love, “dear, little tragic figures in the story of me,” and the phrase struck real fear into my anthropologist soul.  Even as I write these words now back in the glass towers of Princeton University, it’s been hard but necessary to come to terms with the fact that what I write will inevitably be a sort of fiction—irrelevant and inaccurate—because these people, these friends, are not characters I invented, but people whose lives go on, quite independently, quite functionally from mine after I’ve left China.

For every anthropologist of China there is this sense that you become irrelevant once you leave and China goes on changing at the speed of light.  And for every human being who has ever done fieldwork or loved another they’ve left behind, there is also this hope that while others will go on living, that you’ll never, ever be the same.

Visiting foster homes with an orphanage director in Anhui.  Photo by Jason Fouts.
Visiting foster families with an orphanage director in Anhui. Photo by Jason Fouts.

Holy everything

Nearly a week has passed since Christ rose from the grave, since we celebrated Easter with trumpets and sunrise, communion and hallelujahs, feast and fanfare, and I still feel resoundingly full.

It’s not just the ham that’s still in the refrigerator or the earnest celebration of new life that felt so different from the traditions of revering the ancestors and sweeping the ancestors this time of year in China.  In fact, it’s the same story, from my youth, of Jesus riding in triumphantly on the donkey, of black Friday, of brutal death on a cross, and an empty tomb.

Nothing has changed in the Biblical story, so how do I account for what feels so different, so breathless, so heavy, so alive about Easter this year?

First signs of spring on the university campus.
First signs of spring on the Princeton University campus.

Last Sunday as the pastor stood in the pulpit, she reminded us that for Christians, we have no tomb, no cross, no holy place, hill, mount, or edifice to go to pay homage to Jesus, but that we ourselves are the embodiment of the resurrection, the Living Stones (1 Peter 2), the Easter people.  There are no holy places and so in resurrection, we are made holy people.

But our pastor also stepped off a white-cloaked altar into the sea of faces dressed in their best that morning and invited us to share our joys and concerns like we do on ordinary Sundays.  We were reminded that in earnest celebration there is still loss, and fear, and pain.

I think it’s this fact that accounts for the fullness of this season for me, the fact that the communion we take symbolizes not only life, resurrection, and the miraculous, but human brokenness, betrayal, and violence.  Likewise, the Easter story we celebrate leaves the women and the disciples not only full of hope and promise, foreshadowing the incredible growth of the church in history, but also anguished by the death of their savior, and bewildered and fearful at the sight of an empty tomb, a dwindling faithful, and an impossible truth.

This Easter I’m reminded that God doesn’t change, but the resurrection changes us, often and endlessly.  

C.S. Lewis wrote, “I pray because I can’t help myself.  I pray because I’m helpless.  I pray because the need flows out of me all the time, waking and sleeping.  It doesn’t change God.  It changes me.”

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We don’t become Easter people in a flash, jubilant and freed from this world, but we become Easter people when holiness leaves the altar, the cross, the tomb, and steps firmly into our midst and settles into our bodies and life rhythms.  Our circumstances don’t necessarily change, we still look like the flawed people that we are, but we become Easter people when our hearts, our eyes look upon this world and find everything holy.  We become Easter people when we behold what is holy in one another as though we are making a pilgrimage to somewhere sacred, because the Kingdom of God is here, in you and in me.  We become Easter people when we stop parsing what’s God and what isn’t and relish that the Earth is the Lord’s and all that is in it.  We become Easter people when death is always with us, and yet, we experience life anew.

We become Easter people each time spring and hope return to a desperate world, and we’re left full, changed, and holy.

You never change

Watching the rain come down in Yunnan, Kunming, China, May 2012.

It’s amazing what a quiet moment, a rainy Sunday, and a good friend can do for the soul…and the book of James.

“Every generous act of giving, with every perfect gift, is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change,” my friend and I read during our time of centering prayer this Sunday from James Chapter one, verse seventeen.

And so it is that God reminds me that as often as I oscillate between those shadows and those mountaintops, from the villages of China to the streets of Princeton, New Jersey, as much as all that seems relevant in my life might change and shift and move, our God stays the same.

In Lion Hill Park, Guangxi, Nanning. January 2012.

Yes, the same God who knew me and was with me through the challenges of living and growing in China is the same God who finds me here.

It is so easy to become distracted by the circumstances in which we find ourselves, so easy to think our best maneuvers will help us find success, peace, or resolution.  But I’m learning time after time, day after day, that God remains my resting place, and if I earnestly seek God during these days, I’m bound to be found by God, bound to be in the realm of blessing, comfort, and peace.

A withered lotus flower.

And I’m slowly relearning, in this context, just like any other, what it means to live a life of faith, that along the meanderings of my thoughts yesterday, James says that, “if any think they are religious, and do not bridle their tongues but deceive their hearts, their religion is worthless.  Religion that is pure and undefiled before God, the Father, is this: to care for orphans and widows in their distress, and to keep oneself unstained by the world” (James 1:26-27).

The author with a foster child in Guangxi, Nanning. All photos by Evan Schneider.

And that challenge, although I know I will fall short, is one I am humbled to accept.

Children’s Day

Today is Children’s Day in China and all over the world.

A Chinese child flies a kite in the park.

Children are squealing with delight as they run around in the city courtyard below our highrise this morning, and yesterday we had the privilege of passing out cakes and red bean buns to the twenty-two disabled children being fostered in a rural community a few hours out of the capital city of Guangxi.  I’m so heartened by those kids being fostered, loved, and accepted not only by the foster mothers, but by whole families and communities.

But the future is not so bright for all the children of China.  

A recent article in the Xinhua news highlighted Guangxi as just one area of China where children are being left behind in the countryside to be cared for by their grandparents while their parents flee to find work in the cities, and the harsh consequences of those family breakdowns.

And the future is comparably complicated for children in Africa, and other parts of the developing world.

The dynamics of international adoption are never simple, but a recent report from the African Child Forum shows a sophisticated understanding of international adoption and development, namely that, “Adoption can save the lives of individual children and give them unique opportunities to live healthy and prosperous lives, but it does little to address the problems that led to the child’s orphan status in the first place” (Fortin Anaylsis May 30, 2012).

I can’t offer a simple solution today.  I’ve written previously about cultural differences that make even such a seemingly noncontroversial phrase, such as “in the best interests of children,” quite contextual.  I’ve also discussed with some frequency on this blog the relationship between birth planing policies and international adoption, as well as  the portrayal of Chinese children in the media. And I’ve tried to balance these more political discussions with ones that reflect the hope that foster mothers’ in China inspire.

But I can say today that despite the bleak news, and the complexity of working for change in the face of cultural differences and a legacy of misunderstandings, I’m still filled with hope.

The author with a foster child.

A few months ago, one of our foster mothers had been neglecting the two foster children in her care due to her increasing age and a host of other complicated reasons.  And so, the children were moved.  One child was sent back to the orphanage, her age and her problems too advanced for any new family to take on.  And my heart broke.

But the other child, only two years old, was placed in a new family.  When we visited the family a month after the switch, I noticed something different about this child.  She was smiling.  I realized that in all the time I’d known this little autistic girl, I’d never seen a smile cross her face.  In fact, I’d never seen her quite look another adult in the eyes, but here she was, playing with her foster mother, who held her as they both giggled, snuggled, smiled, and laughed.

Yesterday the orphanage monitor praised this woman and her husband’s dedication to their two foster children, and the same smile crossed her face, but this time, tears also slipped from her eyes.

That had been my reaction, too, when I saw those precious smiles for the first time.  Big fat, flowing tears of joy.

So friends, you see, even as there is much to lament, there is much to hope for today when it comes to the world’s children.

Pray with me for their future, for their present, but most of all for them to experience the love of a family and for them to know, no matter who they are or what they’ve been through that they are worthy of unconditional, tears-of-joy kind of love, the kind that really exists not just in heaven, but here on earth, and my they all know it in their lifetime. 

All photos by Evan Schneider.