Category Archives: China

Virtual coffee date

If we were having coffee this week, I’d let you in on a few things…

I’d tell you that it’s already been a week packed with doctors visits and hospital tests like usual, but something has shifted.  It shifted when I realized that despite checking “no” to all the tasks listed on Lucia’s 24-month questionnaire, I also got to check “no” to the question, “does anything about your child worry you?”  In the midst of moments where I could have been discouraged, I counted myself so blessed, because of the much needed perspective our daughter with special needs brings to our lives and my faith.

(Here’s another great perspective on children with disabilities I saw this week!)

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Countryside in Yunnan, China. Photo by Evan Schneider.

I’d also let you in on how incredibly thrilling it was to find an email in my inbox this morning entitled, “你好 from China” from a former student who with her broad interests in Native American culture, architecture, and history, I never thought would quite end up there!  She wrote,

“Also Professor Raffety, China is wonderful. Granted there are many moments of ‘ahh, what am I doing’ but those are minimal in comparison to my many moments of ‘ahh, so much goodness.’ My co-workers, new friends, are brimming with patience, generosity and a eagerness to converse and teach me. I’m sure you have experienced many of these same moments. And of course, the food is new, but oh so flavorful.

I hope all is well with you and your family, your faith and teaching.”

I’m tickled not just because she’s having this encounter with China that I once had that was so powerful and earth-shattering and meaningful but because there’s this subtle affirmation of my call that I also read in her generous words–some mutual recognition of something more than just teacher and student, something more like our vocational and spiritual lives intermingling for something greater.  She had me musing this morning, during a season when I’ve been lacking a bit of pedagogical inspiration, “See this is why I can’t not teach!”

And finally, I’d tell you that I really should be writing my sermon instead of this blog post, but that I think it can all pretty much be summed up in these words from Glennon Doyle Melton that speak to the curious balance of conviction and humility that it takes to live the Christian life:

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What are you up to this week?  Grab a cup of coffee and let me in on it!

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Why the Church Needs People with Disabilities

 

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This is the cartoon on the front of my students’ syllabus!

Over the past five years or so, this blog has taken a massive shift in trajectory toward exploring the lives, needs, and gifts of people with disabilities, in China, in our local church, and through my own experience with my daughter.  (In fact, I’m realizing how much I need a new tab for disability on here!  Coming soon…)

What I’ve found as I’ve only just begun to embrace this collision of my anthropological, theological, and spiritual life is that our theologies, when it comes to understanding disability, are quite limited.  They’re often not broad enough to consider the gifts of the Spirit people with disabilities possess, because they’re caught up in a rhetoric of healing, medicine, suffering, or overcoming.  Or they’re plagued by an anthropology that makes disability some surface form of neoliberalist inclusion rather than a deep paradigm shift for us all in what diversity and its value really confers.

We human beings are searching for theologies of disability that ring true when it comes to the light, challenge, and wisdom people with disabilities bring to life–theologies that confront our hollow concepts of both diversity and God.  But we need to learn and hone and witness to these theologies through practice rather than mere intellectualism, recognizing the transformative experience of life lived with other and with God.

I’m excited about being part of a recent series on Youth Ministry and Disability organized through The Institute for Youth Ministry at Princeton Theological Seminary because the authors are making the case that the Church needs people with disabilities rather than the another way around!  I think this is a really exciting moment for the theology of disability, and I hope you will read all the posts and leave your comments and continue the conversation.  I’m including mine below, but please do swing by this one from my colleague, Joel Estes, and one of the great theologians of disability, John Swinton, among others!

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On Being Transformed

“You never know. Maybe she will get up and walk. Maybe she will be able to eat and talk like other kids…maybe someday she will be normal.” 

I have often heard these well-meaning words from friends, colleagues, and church folk about my daughter, Lucia, who was born with a progressive genetic disease of the brain. From the time she was just a couple months old, from her seizures, to her feeding tubes, and onto her diagnosis, our family has been confronted with the idea that Lucia is abnormal. But perhaps especially because she’s our first child and we know no differently, or perhaps because my husband and I have learned so much from her, I bristle at statements that suggest life would be better for us or Lucia if she would conform a bit more to the standards we hold for other kids. As a person of faith, I often wonder what God would have to say about our ideas of normal and how God might use children and youth like Lucia to fight against a culture that (perhaps un-self-consciously) worships ability and regards disability as a problem.

Keep Reading at The Institute for Youth Ministry…

On “special” needs and ministry

The Sunday morning crush–those moments after worship lets out and as a pastor you spiral through the gauntlet of requests, cordialities, and pastoral care where in a matter of condensed minutes nearly everyone wants a piece of you.  Across these moments I struggle to keep track of all of the information, making mental notes, hoping against hope that I won’t lose the important stuff amidst the sea of bodies and sounds and breaths.  And then, just as suddenly, one of our congregants with special needs descends upon me, with increased intensity and concern.  She has seen something on the news that is bringing her to tears; he becomes angry as he struggles to remember what he just said to me; she can see nothing but darkness through the thick depression that plagues her.

I do not mean to paint disability here as unilateral or un-diverse, but many of the people in our congregation with special needs where their hearts on their sleeves.  They plough into me, a person who’s a bit sensitive to touch, with eager, forceful hugs.  They launch into detailed descriptions and litanies–lists of weekly activities without warrant and ad nauseum.  They foist their feelings upon me in thrusts of emotion, seemingly without warning or reason.

And in so doing, they are deeply needy.

Their bare, disruptive, palpable need right there in the midst of more palatably, socially-aware displays of contained emotion, less barrier-breaking touch, and less audacious requests clashes with my own sensibilities.  It’s too much, I think to myself, this business of trying to minister to folks with special needs alongside more “neurotypical “folks, which is the dance in which our church has become messily entangled over the past few years.  I can’t help but think about the imbalance special needs present not just during Sunday morning but within the life of a church–how I, as a pastor, can’t shirk the sense that in attending to these needy folks other more subtle needs may be lost.  In trying to provide classes and worship and counsel that is suitable for all modes of learning, my colleague in ministry, church leaders, and I may be spreading ourselves thin, engaged in some cruel, impossible quest to meet needs that are unreasonable and insatiable along others that are more comprehensible and predictable.

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Stained glass at Sainte Chapelle, Paris, France.  Photo by Evan Schneider.

But in pondering neediness I am reminded of the poor, elderly foster mothers whom I met in China and the way their vulnerability rocked and assaulted the sensibilities of the orphanage monitors.  Such women, many of whom had been abandoned by their own biological children, so desperately relied upon and needed their orphaned, disabled children to recreate life-giving family bonds in contemporary China.  In their need, they reminded middle-aged orphanage monitors of their own failures to care for their aging parents or their neglect of their only children.  They reminded these orphanage monitors, powerfully, uncomfortably, and disruptively of their own human and yet deeply repressed and seemingly inappropriate needs for love, compassion, and care.

And here I do mean to compare the need of these foster mothers to the need of folks with disabilities and to the needs we all have as human beings.  I am reminded of Jesus’s ministry to deeply needy people–to the perceived inconvenience of the poor, disorderly women, especially those pouring lavish ointments over his head and touching the hem of his garment.  I am reminded of the metaphors so often associated with need and disability–the unclean, the contaminators, the sinful–and I am aghast that in erecting divisions between people with disabilities and myself, I find that I am the one who is fragile, human, and sinful.  I am suddenly aware that the crush of bodies on Sunday morning and these raw emotions, hugs, and pressing needs that seem so inconvenient and disruptive are both deeply human and deeply holy.

And I begin to see that ministry and life (for in Jesus’s life), were not and are not about balance or containment or arbitration, because then life becomes about division.  Then I am led to believe that some people are needy while I am not or that need isn’t so fundamentally human, that it’s not part and parcel of Jesus’s incarnation and ministry.  So I try and I struggle and I pray to let go of my economist tendencies and submit to such a mysterious ministry of mercy and care and love.  I try not to mediate the crush; I try just to pay attention.  

But I am also reminded that it’s not just paying attention, and how painfully aware I become in these moments of my own need–my need for self-acceptance, other’s acceptance–and my need for Jesus.  And I become thankful that there are some in our midst who aren’t necessarily having such divisive thoughts or harboring such divisions, some who are so deeply, honestly, beautifully needy.  I become happily convinced that “we” have gone about this ministry all wrong, for “we” have so much to learn.  I become convinced, so richly and powerfully as I do over and over because of God’s ministry to us, that it is not I who is ministering but it is I who am being ministered to.

Crucifix
Crucifix in Paris, France. Photo by Evan Schneider.

Doing What Matters

Suppose we did our work

like the snow, quietly, quietly.

leaving nothing out.

–Wendell Berry

It hit me in the midst of another inglorious diaper change, the consequence of some digestive discomfort following Lucia’s recent surgery, on a late Saturday afternoon on which we, like nearly everyone else on the east coast, were holed up riding out the incessant blizzard.  We’d rushed home from the hospital on Friday night, eager to get ahead of the storm and heal together only to find that the new feeds were irritating Lucia’s bowels, she was still achey from her incisions, and on account of the snow, we were stranded without nursing assistance.  As I washed my hands and looked rather grumpily into the mirror, I had one of those flickering thoughts laden with resentment, wondering what it was exactly that I’d been doing all weekend.

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A view of the storm from Lucia’s room.  My photo.

When I began spending time with foster mothers in China I found that if they didn’t live in farming villages or shacks on the outskirts of the city, they lived in dilapidated six or seven story walkups–big, domineering concrete shells with no elevators.  For slight elderly women (the people of Guangxi are extremely small-boned) whose knees had long grown tired from years of hard work and whose backs were already curved, such daily climbs were challenging enough.  But when I first watched one of these women sling a foster daughter of about eight who couldn’t walk to her back to take the stairs, I gasped.  Observing these women climb six or seven flights of stairs with such enormous burdens strapped to their backs over and over, I admit that I often wondered, what are they doing?  Why are they doing this day after day, week after week, year after year?

Like any good Westerner, obsessed with efficiency, ingenuity, and supervising, I also marveled at the ridiculousness of it all.  It rather pained me not necessarily that the sacrifice was so grand but so unnecessary, so overwrought, and that it had become so mundane and accepted.  Many of the foster mothers had husbands and other children who presumably could have stayed home with their immobile foster children, yet they chose to carry them up and down the stairs.

Why?

Years later as I barely sweat to change yet another disposable diaper in my warm home, I’m sure I will never quite comprehend the backbreaking work that those foster mothers did, but I think I know now why they did it, and why they continued to do it.

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A foster mother with her son in Guangxi, China.  Photo by Evan Schneider.

Because it matters.

In doing that daily work of caring for their children with special needs–climbing, bathing, and feeding–they were doing work that matters.  And I think that care mattered not only to the children who wouldn’t have been able to venture outside, have a home, or even a mother without them, but also to the foster mothers themselves.  I remember many times catching a glimpse of a seemingly impossible smile upon their faces, a laugh upon their lips, or even a lightness to their steps as they climbed and climbed those stairs.    The smiles weren’t always present by any means: caring is hard work, and I don’t want to diminish it as such, but I think the care that foster mothers gave their children mattered, because they did it not to their children, but with them.

I think there’s an emphasis on making the time we have in this life, especially in this country, count.  There’s an emphasis on being efficient, responsible, and wise with the way we spend our time.  I even hear people talking about doing things because they’re wanting to “make memories” for their children for the future.  And I think there’s a lot of good in responsibility, wisdom, and intention, but I gulp a bit when I think how viciously and flippantly I began to judge those matter-ful moments spent together this past weekend.  It will always be easy to assume that things can be done better and time certainly is a scarce resource.  But I there’s something upended about judging some memories wanting and others foreordained, in dismissing some work as mundane and inefficient, and failing to see what matters most.

What did I do all weekend?  I rose when my baby cried, I tried to ease her pain and comfort her, I wiped her bottom and changed her pants too many times to count, I snuggled with her by the fire, I worried about her, and I doubted myself for a moment.  But today as I threw her in the stroller to venture out into the white, white snow, I thought of those long treks up and down the stairs in China, and I smiled.

It’s work that matters: it matters to our kids and it matters to me, too.

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Silly Sunday Selfie.

A New Year

My last post was in July 2015, and it’s been an interesting five months away from blogging.

I wasn’t sure I’d return.

I’ve been treading cautiously, because there are big changes in my life, and I’ve been trying to wrap my head around them.  Bluntly, my professional life and my personal life have collided over the past few years.  As my daughter nears two, I’m finally comfortable sharing her story and mine, which I will do on the blog for the foreseeable future.

My husband and I have become parents to a precious child with profound special needs.  It has changed and will change our life forever.  And it is good.

But I needed time and space to come to grips with that reality and who God is calling me to be.  And in the past half of a year so much has changed alongside that reality–I took a job as a quarter time pastor at a wonderful church, and I am teaching a writing seminar on disability.  And though I’ve struggled to apprehend it, it all feels so good and full and right.  I think I’m where I’m supposed to be.

And so while I’m still treading lightly, I’m ready to do so a bit more publicly.  I’m ready to share my journey again.  And I’m hoping it will encourage you, too.  When I began this blog nearly NINE years ago, I never imagined it would take this turn.  But then again, I’d only begun to conjure China, a Ph.D., a life betwixt amidst anthropology and theology.  I’m thankful for the ways that life is continually coming into view, and prayerful that the unknowable steps will follow God’s lead and God’s call on my life.  I’m excited for the ways Lucia’s life is transforming not only my personal but also my professional life for the better.

It’s been interesting and painful to learn that despite our penchant for understanding the breadth of humanity in all its difference, we anthropologists have not shown much passion for understanding people with disabilities.  In the new year, my blog will continue to grapple with culture and difference and faith, and I will refine this commitment to exploring and understanding disability.  I hope you will continue to journey with me into little sacred spaces.

Faith Begins by Letting Go

A few weeks ago, I preached a sermon on the trust psalms, particularly Psalm 27, entitled, “Trust, Perseverance, and Doggedness.”  When I went hunting for a closing hymn for the service, I stumbled upon a relatively new one entitled, “Faith Begins by Letting Go.”

While I ended up selecting it for the service, I felt a bit puzzled by the title, the lyrics, and the sentiment.  The first stanza is as follows:

Faith begins by letting go 
Giving up what had seemed sure 
Taking risks and pressing on 
Though the way feels less secure 
Pilgrimage both right and odd 
Trusting all our life to God

I wasn’t sure I believed that faith begins by letting go of our foundation, taking risks, and that one’s pilgrimage should feel “both right and odd.”  Still, something about the hymn seemed to resonate with the content of my sermon, especially the ode to one of the great contemporary spiritual writers, Anne Lamott, on perfectionism and they way in which our writing cramps up around our wounds as in life.

These past few weeks I’ve encountered my own cramps and struggles to write, and am starting to believe in this whole wisdom of letting go.

You see I was having a lot of trouble getting my thoughts to find substance and clarity on the page, writing and rewriting pages and pages of an article on my research with foster mothers in China.  I kept thinking that despite my frustrations, I needed to have faith that these meanderings, however seemingly futile, had some semblance of progress and that I would eventually find my way if I kept at it.

However, this morning during my prayer time I realized that in the writing process, I’d started to lose the joy and excitement that is so genuine to my work with families in China. And I decided to give myself the freedom to reflect freely on what I learned and what I love about the families I worked with.  In a away, I decided to free myself from the burden of writing something smart and relevant and pertinent to the academy and instead tap back into what these families, this culture, and these people taught me about God and life.

And suddenly I was at no lack for thoughts, ideas, and even words on the page.  

I recalled, rather crudely, what these foster mothers had taught me about my own neediness for God and for others, and that true kinship, true family, is not about blood, choice, or even love, but our deep need for one another.

I love that as I yielded to venture away from what I think I know or how I think I should say it, God let me back to my own need for God and others, and this great sense of unity that in my deepest being I have for my vocation as both a scholar and a minister.

I’m so thankful for the wisdom of letting go today–not only because it’s getting me closer to getting this article down on the page, but because it’s taking me to a revelation that I couldn’t have found on my own, by my own strength, might, or wisdom.  It’s making clear my need to rely on God and others for insight, faith, encouragement, grace, and communion.

And despite how scary that is, it’s an an amazing place to be.

On big plans

The woods beside the D&R Canal.  My photo.
The sunny summer woods beside the D&R Canal. My photo.

It’s been quite awhile since I posted anything and to be honest, I’m not sure how much life this blog has left.  It’s been such a joy over the years to write about faith and anthropology and China and life and share, but when that doesn’t come easily or isn’t one of my first impulses, it makes me wonder if there is a new chapter on the horizon.

Lately, life has simply gotten in the way, and blogs that feel they have to make apologies for that have always been (for me) some of the most arduous reads!  So I will be praying and thinking about what this blog may or may not become and be faithful to you by giving an answer sometime in the near future.

For the moment, great changes are in the mix for our family and all in the span of a few weeks: a surgery for my daughter and recovery, packing and moving to a new apartment, my graduation from Ph.D. program, and a trip to the beach with my family.  Sometimes in the midst of all these things when I feel particularly out of control, I’m tempted to cry out, “God, what are you doing?  I’ve got big plans here!”

And then I realize how righteous and petulant and silly that must sound to God.  Sure, I have plans, but God has the present, the future, and everything between in God’s hands.  I’m still working to trust God with the big things rather than struggling to swim upstream and wrest control from God.  And to trust and believe that God’s plans include the impossible, the not-yet-dreamed, and goodness beyond my wildest imagination.

Where are you struggling to trust God these days?  What are you learning?

Virtual coffee date

I have been thinking lately about how helpful it is to reframe major challenges in life as adventure.  

You know how sometimes you’ll be going through something and someone will try to comfort you by saying, well, it will make a great story later, won’t it?  What if we could embrace the great story now?

It sounds crazy, but I think my life is just as much, if not more of an adventure, here in the everyday with a baby, classes, and trying to be faithful to God as it was living in China and traveling the world.  I’m trying to be grateful for the adventure as I’m living it rather than tomorrow or in a couple years.  I’d love to hear how you do that in your lives!

Amazing islands of Hong Kong.  Photo by Evan Schneider.
Amazing islands of Hong Kong. Photo by Evan Schneider.

I’ve also been reading Sacred Pauses and just hit the chapter on silence, which you know is my jam.  My mind was kind of blown by the idea that none of us have actually ever experienced silence, the true absence of sound, and that silence in general actually makes us more attuned to the presence of small, overlooked, everyday sounds.  The author used this to encourage us that God is always working, especially in the silence, a truth that has been powerful and poignant for me over the years, too.

An illustration from Ezra Jack Keats’ The Snowy Day.

It’s finally a little warmer, though there’s still heaps of snow on the ground.  Yesterday our little family took a lovely, cozy walk through the snow.  I just love how it crunches under your feet.  About a year ago, a friend gave us the children’s book, The Snowy Day by Ezra Jack Keats, because our daughter, who will turn one next weekend, was born in between two snow storms.  It is my favorite children’s book that we own, and I’ve been reading it to her a lot lately and reminiscing about her coming into the world amidst slow flakes coming down in the wee hours of the morning.

Yes, I’m adult, yes, I was raised in Wisconsin, but there’s still something so magical to me when it snows.  I remember my husband trying to describe snow to his students in South China who had never seen such a thing.  They were incredulous and full of wonder.  I wonder if they will ever see it snow in their lifetime.

Sure, it gets cold out here.  But life is quite the adventure anyway.

Happy weekending.

Love these two...my photo.
Love these two…my photo.

 

 

 

 

 

Virtual coffee date

“I think I just love ideas,” I said to my husband dreamily the other evening after a particularly rousing conversation with a colleague.

It didn’t seem like much a revelation, but I may have mentioned that defending my Ph.D. last year has seemed to open up all this conceptual space with which to dream about vocation both in and outside of academia.  It’s been at once exhilarating and daunting.  There’s so much freedom that I’m almost paralyzed by it.

Halong Bay, Photos by Evan Schneider.
Halong Bay, Photo by Evan Schneider.

But to acknowledge and relish that I really get a kick out of talking about theories, ideas, and people is a small start.  And then the other day as I chatted with a colleague on the seminary campus who turned to go into her office, I turned to head back to the university campus, to my syllabi, articles, and ideas.  And I was so thrilled and so grateful to have that desk, that community, and those ideas.  I realized as scary as it is to admit, I’m not ready to give up on the academic job search yet.  I want to see it through a bit longer.  I want to continue to pursue these possibilities, because I have so much passion for the work I did with foster families and children with disabilities in China, for China itself, for students, and for anthropological knowledge and those ways of thinking.

Things seem positively turned upside down in my life right now and I have no idea what God is doing.  But I’m trying to learn (again) to be content with that– to embrace the thought that this not knowing about the future is not really so bad and that life is an adventure that is so much better when we let God lead.

The other morning I saw the sun for the first time in a long, long time, and some words from good ol’ Anne of Green Gables came to me as I happily thought, “Today is fresh, with no mistakes in it yet.”

Trying to live in that freshness, faithfulness, and fullness that God so generously provides.

Hoan Kiem Lake, Hanoi.  Photo by Evan Schneider.
Hoan Kiem Lake, Hanoi. Photo by Evan Schneider.

Have a good weekend.  What are you up to?

There are typos in my dissertation

When I finished typing the last few words I set aside my dissertation for about a week.

I was afraid to read it, because I knew there would be typos amidst that sea of words.  It’s just impossible, not matter how many proofreaders, no matter how much time spent, to produce something perfect.  And while I know that, I didn’t want to experience the pang of how those mistakes would mar the crisp, white pages.  I wanted to believe that there was some way that all my hard work would pay off with perfection.

Like I said, that lasted about a week, and then I had to face reality.  I read through it, in preparation for my dissertation defense, and there were many typos.

And it was still okay.

One of my last dissertating sessions.  My photo.
One of my last dissertating sessions. My photo.

In fact, the typos reminded me that I’m not in pursuit of something perfect, but something human, something meaningful.  What’s more, I could see beyond the typos to those people in China who changed my life.  As I read, I was humbled to see and know that despite the congratulations that would be heaped on me and only me after the defense, this dissertation, was truly the work of many hands.  The typos reminded me that despite the perfection that’s so idolized in academic fields, we academics are imperfect people who rely heavily on the minds, kindness, and generosity of others to produce our knowledge.

There were moments where the typos made me wonder whether I had any business defending a dissertation toward a Ph.D., but I’ve also realized that it’s great to recognize that while you have learned a lot, you still have much more to learn.  It’s not so bad to see typos and be humbled and recognize that you’d rather be transformed and human and vulnerable than perfect and magnificent and independent.

This Thanksgiving, I’m thankful, in all circumstances, for typos, for friends, for family, for foster families in China, for dissertations, for new journeys, for imperfection, for growth, for love, for peace, and for God.

What about you?