Tag Archives: growth

My resistance

The first year I was teaching in the writing program Lucia was diagnosed with Aicardi-Goutieres Syndrome just a month after her first birthday.  I remember that despite the cake and the guests, there was a somberness to that first birthday.  Lucia couldn’t eat the cake we made, because she’d just begun feeding through a tube a few months prior.  We worried that she’d spit up violently during the party like she often did or that she’d scream in pain most of the time.  But mostly we felt intent to celebrate because we didn’t know how many birthdays we’d have and we were desperate and determined to have that first one even if it wasn’t perfect.

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Lucia’s first birthday party.

Later that summer I began to wonder what God was doing.  

I’d spent years doing research in China studying foster families who raise children with disabilities; disability in China had become so unexpectedly a professional, academic interest.  And then we had our own child with special needs and it all felt a bit too close for comfort.  People wondered about the order of things: surely you planned to study disability because of your own child?  No, it was the other way around?  They’d shake their heads disconcertedly, unnerved, perplexed.  It felt reductive to presume God had been equipping us in China to be Lucia’s parents or a bit simplistic and crass to pronounce that Lucia’s disability and our relationships with families in China had all been a part of God’s plan, but it was also hard not to see it that way either.

But somewhere along the way, I began to embrace what God was doing even if I didn’t gully understand it.  I began to dream that summer about a writing course about disability, but would students want to take such a course, I wondered.  When we develop our writing courses our directors always encourage us to get inside the minds of 18 year olds arriving at college, and so the most popular classes are on madness, New York, extra-terrestrials, and film.  Would a course on disability really be something freshman students would care about?

I’m not sure how popular my course has been, but every semester, two groups of twelve students walk in the door.  Many of them come because they have a family member who has a disability, and they want to understand and talk about it.  Some of them are just curious.  I’m sure for several of them, my course wasn’t their first choice and they just ended up there by chance.

But I try to make the most of that chance.  

The course considers disability as a form of diversity, a form of difference, and challenges the students to think beyond what they thought they knew about disability to reconsider how disability can teach us more about what it means to be human.  At an elite, ivy league university, the thought that people with intellectual disabilities might be insightful when it comes to our knowledge about humanity it a particularly challenging, counter-cultural thought.  For some of my students that dissonance, having a brother back at home who struggles to speak because of his autism, while they are thousands of miles away, toiling for the mere self-improvement of their own mind, is nearly too much to bear.  During a routine writing conference, one such student broke down and told me, “I just had to take your course.  When I look at all the ones on campus, it is the only one that seems to matter.”

I am not a miracle worker, but I do try to offer those students shelter and companionship within the world of academia.  I know just how inhospitable such a world can be to the daughter I love most, the daughter who has taught me more about myself, life, and God than nearly any other human being on the planet–and yet to so many, she is broken, disabled, lacking.  Together with twenty-four students each semester in this small, windowless classroom, we encounter just that kind of prejudice and exclusion toward people with disabilities, and I invite them to see otherwise.

What happens each semester is powerful.  

Not only are there brave, open-minded students who have little contact with people with disabilities but come because they want to learn, but there are students with disabilities in my classroom who find that they are not alone and they are valued.  There are students who leave impassioned to work with and learn more about people with disabilities even though they came in somewhat hesitant.

And at the end of the semester, when I have the students write narratives and Op-Eds about what they’ve learned about disability, I am overwhelmed.  At the end of a semester of rigorous academic writing, they are invited to share their hearts, and I sit there with my coffee and my computer, humbled and honored to be invited into their beautiful, painful lives.  So many students have written about how religious leaders have been so limited in their understanding of disability, hurting their family members, denying their humanity.  So many have written about their own struggles with learning disabilities or mental illness that they’ve often kept to themselves on a campus that doesn’t have time for any inkling of weakness.  Still others find the language of disability and difference a provocative opening to reconsider their experiences of race, class, gender, or body issues.

Every semester these disability narratives blow me away.

I learn so much from my students.  Indeed, it was with that first class that I began to write about my own experiences–“I’m Not Sorry” was my disability narrative that I wrote alongside them, because I told them that I couldn’t ask them to be so brave if I wasn’t willing to try, too.  These students have made me realize that the collision of my personal and professional life is both a gift and a responsibility.  As I read over these narratives this past week, I realized that students leave my classroom better equipped to appreciate what is sacred in people who are different from them.  And the hope that welled up in my heart when I read those narratives was distinct and surprising and so thrilling, because these students will resist attempts to belittle those who are different and those with disabilities.  I know they will.  These students will use their knowledge for good.  It is because of these students that I can’t help but find purpose in my life and Lucia’s life; the opportunity to serve them and to grow alongside them is just too precious, too unique.

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A few days ago, I snidely posted the following words to my social media account,

“Apparently there’s an inauguration today. Meanwhile, I have rearranged my office for maximum coziness while I get to read the exams where my students explore what they’ve learned about disability and difference over the course of our semester. How’s that for a protest, Mr. Trump? Three semesters (and counting) of students who will value and advocate for people with disabilities: we will make America great with or without you.”

So you see, this class, while it’s not overtly political is a distinct act of resistance in a world that is far too close-minded, cruel, and careless when it comes to the lives of people with disabilities.  It’s resistance that comes from knowledge and hope and love.  It is the resistance that I choose and that has chosen me.  And I will carry on because just a few years removed from Lucia’s first birthday, I no longer question God at all.  Rather all I can do is thank God for God’s incredible vision and a life so humble and yet, so grand.

Who could have imagined?

Yesterday a woman who works at Barnes & Noble walked right up to Lucia and greeted her–she knew her but she didn’t know me.  One of Lucia’s favorite nurses, determined that she wouldn’t become isolated with our recent move to the country, regularly takes her on outings to book stores, walking trails, parks, and libraries, and this woman had read books with my child many times!

One day when I was working from home and a friend stopped by the house, Lucia was out on one of these excursions unbeknownst to me.  The friend was a little disappointed.

Lucia has her own social life, I chuckled.  Who would have imagined?  I thought.

Indeed, I think it’s easy given Lucia’s diagnosis, physical, and cognitive challenges to presume that she lives a limited life, but this is so far from the truth.  Precisely because we’ve been forced to rely on nurses, doctors, and therapists to help us care for our medically complicated child, Lucia’s social network has certainly widened beyond the typical two and a half year old.

At the outpatient facility where Lucia does her therapy she’s not usually interested in toys, but she always cranes her neck to see the other children running and jumping and shouting.  This morning Lucia’s nurse, having just returned from China, brought her a Chinese children’s book and Lucia cocked her head to listen as the two of us yammered on in Mandarin about her trip.  Several months ago, one of her nurses put her hair in Jamaican braids!

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Lucia taking a nap on the D& R Canal in NJ.  My photo.

I think about the incredible richness of the life Lucia leads and I am in awe.  Our minds, our predictions, our perceptions of life with disability often fail to see beyond the presumed downside of dependence, medical necessity, and constant care.  But Lucia’s needs have, in such a good way, forced us all to expand our very limited social circles and our very limited notions of what life with disabilities entails.

A month or so ago when I spoke on the phone with a parent advocate about Lucia’s impending transition out of the state’s early intervention program and into school, she compassionately yet inaccurately projected another presumption onto me:  “Oh I’m sure your heart is just breaking at the thought of her going to school all day, on that big bus.  I’m sure it is so hard to see her go.”

Perhaps it would be hard to see Lucia get on that bus if she hadn’t already been living her life so fully.  But knowing how much Lucia enjoys all of these people, adventures, and diversity in her life, my husband and I are decidedly eager and excited for her to start school.  Perhaps another thing all these doctors visits, nurses, and therapists have prepared us for is trusting others with our kid, knowing it’s so important to share her rather than shelter her from the world.

When I look in awe upon Lucia’s full life, I cannot fathom the wisdom of God.  This is precisely the life I would want for my child, and yet, who could have imagined this life in particular?  Who could have imagined this village that God has provided, this little social butterfly despite her lack of words and gestures?  Who could have imagined that it would take the world and its limitless possibilities to help us see how Lucia has expanded all of our lives?  Who could imagine that a life with disabilities could be so rich and nuanced and bold and grand?

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Every time I look at this photo of Lucia I can’t help but smile. (My photo.)

Well, God, of course.  

And thank God for that!

Embracing difference as a spiritual discipline

We Christians have not been known, especially in recent years, for our ability to embrace difference…but what if we were?

A few weekends ago I listened to a podcast on the enneagram, the typology of nine interactive personality types that supposedly traces back to the desert fathers, and have been fascinated ever since.  But while I have loved learning about my type, where I’m prone to stress and poised for growth, what I’ve loved most about the typology is the window of empathy it has given me into the way I view my friends, family, and co-workers.  The enneagram, at its best, celebrates the differences that make us human, and instructs us not to try to change but to further understand and know one another.

But what about when people are really, really different from us and those differences confront what we think we know about ourselves, our culture, and even our faith?

As an anthropologist, I’m not only attracted to, but trained to appreciate differences in all their human forms.  When I meet someone who tells me about a different upbringing, worldview, or belief system, my ears perk up, and my intellectual curiosity sparks.  “How fascinating,” I think.  Tell me more,” I often blurt out instinctively; I listen and wait and expect…to grow.

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JingPo Christians in Yunnan, China.  All photos by Evan Schneider.

This robust respect for difference is entangled with one of the controversial, central tenants of anthropology–the notion of cultural relativism, or the belief that you kind of have to know a bit, well a lot, about another culture to understand it and to see and understand how they value what they value.  All cultures contain truth and integrity, but we rarely stop to pay attention and try to see things the way others might see them.

As I mentioned, this tenant is controversial because it’s really challenging.  Especially in the course I teach on disability, it’s almost impossible for our ableist and intellectualist-coded minds to stretch ourselves to consider disability as yet another element in human diversity.  When I assign a provocative chapter that references the very title of our course, “Disability as Difference,” students are wont to collapse the tension, to find the differences of disability clearly lacking or deficient, or at the very least, to assimilate the disabled to be “just like us.”

We human beings are simply not very good at seeing difference as valuable or even neutral. We’re constantly shaping, skewing, explaining, and evaluating differences (and different people) that we come into contact with everyday.

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The great Buddha at Lantau, Hong Kong.

But what if we added to our spiritual disciplines the act of allowing space for difference and even appreciating difference before we try to so hard to reform it, judge it, or rehabilitate it?

I think Christians especially have been afraid of the costs of such a foray.  We are afraid of where an appreciation for difference may lead us–astray from our Christian beliefs, our Christ, our God, our truth.  But if we are so easily lead astray from our faith when we value the differences of others, do we not serve a God who is small to begin with?  If our faith falters at the very introduction of contradiction, tension, and diversity, is our faith not flimsy and perhaps very worthy of being discarded?  Might we find a more robust faith, as Jesus did, in accompanying and learning from those who are different from us?

As an anthropologist who has learned so much from others about God precisely because of this openness toward difference, I seek a faith that is deep and profound and hearty because it is constantly probed and reevaluated and tested by what I am learning.  At every angle, when I exclaim, “That’s fascinating,” and sit at another’s feet to listen, I may risk something, but I also stand to gain so much.  I find this openness to difference, this grappling with diversity, to be a spiritual discipline because God is nothing if not miraculously incarnate and yet profoundly different from us at the same time.

But often we forget that truth.  

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Family out at a restaurant in Cairo, Egypt.

We presume God to belong to us, to be just like us, to be ours, to be with us and for us.  But I think God wants us to read scripture against the grain, to consider the rich diversity among its pages and in our lives, and to explore with abandon, making ourselves profoundly open to others and to God in unlikely and unexpected people and places.

We can’t do that if we’re afraid and closed off to those who are different from us, though.  We can’t grow if we don’t allow difference to disrupt our neat beliefs and convictions.  We can’t truly know God if we confine ourselves to that which is similar, expected, and narrow.

Do you do this in your life?  How do you embrace difference as a spiritual discipline?  How has it enabled your faith to grow, even if it has been tested and tried?

My husband often talks of how our seminary professors challenged us to discover a second naiveté after the faith of our childhood failed us and here Cornel West talks about a healthy atheism. I’m really interested in exploring how vulnerability like this to difference, especially, can help us to grow in our love for one another and God.

 

 

Askant, askew, and coddiwompling about

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A friend posted this to Facebook this morning.

And this week  (and probably all weeks), I’ve been teaching my students about the power of words–especially the ways in which words are coded with hidden cultural meanings, with gender, class, and race.  There is always more than meets the eye, metaphor dripping and resonating with import, value and privilege connoted in simple turns of phrase.

What’s funny to me about coddiwomple is that it doesn’t sound the least bit purposeful; it sounds more the stuff of vague wanderings, trodding, trudging, even.  For me it comes too close to the catawampus or the cattywampus, the awkward, askew positioning that some prefer to catty-cornered.

Over the past few days, we’ve discovered that things are a bit cattywampus in a 200+ year old house.  Stairs, floors, windows, closets, joints, gutters–give it 200 years and everything is a bit askant, askew, and disheveled.

And so are we.  

There’s been the stress of moving from place to place for months and finally into this home, and then the rains from this weekend flooded our department, some offices, and classrooms, and so even at work now I feel a bit aimless and displaced.  These are small inconveniences, ones that have lended much needed perspective for me to the challenges many in this world face on a much grander scale.

But they’ve also reminded me that we human beings need purpose.

When all else fails, even when we press on toward a vague destination, we crave clarity, connection, conviction.  What I thought this house might yield along those lines, though, I realize now, is only the beginning.  When we purchased this house, I prayed that it would be a gathering place for family, friends, and strangers, that it would be a place that blessed many and not just us.

But that purpose is still unfolding, amidst boxes and all that is askew, and I’m often impatient to discern the future.  What I’m recognizing and perhaps disappointed by is that although we seem to be home finally, we’re still traveling, always traveling, making our way though the way now be paved with local negotiations, leaky faucets, and neighborhoods.

When it comes to words, coddiwomple might be a nice mantra, a beginning, rather than end point, in order that I don’t lose sight that purpose, in so many ways in my own life and probably yours, is also still unfolding.  What I’m won’t to do in moments like these, is harvest the simple purposes in the everyday–in the fact that this area is crawling with amazing butterflies, in the serene walks atop the cemetery, in the union of struggle and working together that has to happen but also can and does happen when we meet challenges with patience.  

Maybe it’s possible to live purposefully even when you’re a bit disheveled, or at least I’d like to think so.  I’d like to be a bit coddiwomple in a world that is often askew.  I’d like to glean purpose, like a forager, a harvester, a woman who doesn’t let a little rains or floods or follies deter her…

But we’ll see, won’t we?

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?

On nourishing the Spirit

I think I was in sixth grade when I received my first copy of Oswald Chambers’ devotional, My Utmost for His Highest.

I’ve reread the book countless times over the last couple decades (yikes?!), and it always amazes me how relevant Chambers’ messages seem for our time despite the fact that he lived and wrote at the turn of the twentieth century.

Reading through today’s devotional in My Utmost, I was reflecting on how Chambers’ says so directly that “when a person is born again from above, the life of the Son of God is born in him, and he can either starve or nourish that life” and the contrast between an ever-loving God and a God whom we cannot truly receive or know without will, effort, and commitment.

Incense prayer labyrinth at a temple in Yunnan, Kunming, China. Photo by Evan Schneider.

Chambers goes onto say that only at our wits’ end does it seem necessary or no longer cowardly to pray, “but as long as you think you are self-sufficient, you do not need to ask God for anything.”  And, prayer is “not a matter of changing things externally, but one of working miracles in a person’s inner nature.”

I’ve been reminded lately in conversations with friends of this illusion of control and how often we prefer to live that lie rather than the truth.

What I’m also reminded of this morning is that God is not ‘out there; but desires to live through you and me, and this work of seeing and knowing God is about constant growth, about choosing everyday to get beyond ourselves so that God can nourish us and those around us.

That’s what God’s been speaking to me lately…what about you?