Monthly Archives: June 2016

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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A Lament of Modern Medicine

A week ago today, my husband, our daughter, and I spent the morning at a clinic appointment at the hospital.  This was a good hospital visit–the kind where it seemed like every doctor who came in the room wasn’t complimenting Lucia’s abilities or bemoaning her lack thereof but seeing how happy and comfortable the three of us were.  It felt like we and the doctors, we finally got each other, like so many of them were really seeing Lucia as more than X-rays and EEGs and milk scans and surgeries.

And then bam.  

The very next day we got a phone call that something was wrong on the X-ray and it all seemed to fall apart.  I began to scrutinize what more I could have done for Lucia along the way as a parent, I began to feel the weight of failure, the pain, cruelty, and fatigue of hearing so very, very often that there’s something “wrong” with your child.

In my classes, as an anthropologist, I often seek to make students aware of what I call the “cult of medicine,” the fact that too many of us actually seem to worship and adhere to medical wisdom above all else, and if we let it, it and its seemingly endless cures and technologies and surgeries, will certainly rule our lives but it may not satisfy us.

Don’t get me wrong, I’m not against science or medicine.  I love me some doctors, especially those who have helped us make sense of which interventions are necessary and when we can just let Lucia be.  In fact, on Thursday we’d just said goodbye to a doctor who looked me in the eye the first day Lucia received an abnormal EEG and told me, “No matter what happens today, you’re still taking home the same baby you came with.  Nothing changes today.”  I instantly sigh and choke up every time I repeat that phrase to myself.

Yes, we said goodbye to a good one on Thursday, and I know all these things about medicine and Lucia, which is why I was so beat down, so frustrated that I let myself doubt it all.  In the face of yet another diagnosis, another medical power play, another anonymous phone call about something that was wrong with Lucia, I let myself imagine that things had actually changed.

But they hadn’t really.

Back home and even in the doctors office, it seemed the subject at hand was blissfully unaware that her future was being talked about in X-rays and injections and surgeries.  In fact, she even flashed a few smiles, last night she giggled without descending into crying (a new feat!).  In the midst of the medical mire, these things heal me–to know that my baby is still the same baby I birthed, I’ve known, I will know.  Nothing can change that.

But this life we live is a balancing act that often feels lonely and challenging and impossible and weary.  Every decision we make forecloses or necessitates another; we fumble, we flail, we debate, we fear, and above all, we love our daughter so fiercely that it all really hurts.

My husband and I have been speaking in metaphors lately because prose just doesn’t seem to do it.  So perhaps one more if you will: it’s like our family is on a little boat wading through the great expanse of medicine, and for a moment, we were a bit off course.  But medicine can be really great and grand if you keep your little rudder about you, which keeps your ship balanced and unchanged.

And so we will go on.  I will go on.  In fact, I will drive down to the hospital again this morning, but hopefully bolstered by my rudder, my faith, and that little posse of people that get me and my family who are adrift in this medical world.

I will go on picking up the pieces…but it is not easy living in a world that parses and prods and makes knowledge in bits and parts of your kid.  It’s not easy pushing against the endless barrage of rejection and criticism and diagnosis that medicine provides when you’re in search of genuine connection, communication, and life well lived.  It’s not easy to keep my wits about me in this world that can only seem to find faults with this beautiful little girl I was so blessed to help create.

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Our little tribe.  My photo.

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…

Ten links for your weekend

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Summer in NJ is really beautiful.  Photo by Evan Schneider.

We’re off to another apartment this weekend, and so far, the subletting has been really great–a great, great reminder that as Leo Babauta over at Zen Habits writes, “All You Need, You Already Have.”

Here are some other great random tidbits for your weekend:

Is Sichuan cuisine losing its spice?

All things feminist, internet, and fun. (From my favorite blog, A Cup of Jo)

This is an older article, but still relevant I think.  Do you practice slow parenting?

I don’t know if this is reliable, but supposedly you can plug any month of the year or any place you want to go into this search engine and figure out the best time to travel.  One of my friends is in Santorini right now and according to the engine, she’s got it right!  What city are you headed to in June?

The disturbing therapy gap when it comes to race in America.

Do you keep lists of baby names for future babies?  My sister just found out she’s having a boy, and so far there’s not much new on the most popular baby names of 2016 (Olivia for girls) (Ezra for boys), but I love to keep tabs on what’s trending.  What do you like?

Deeply moved by this prophetic (Presbyterian!) voice in Congress.

I appreciated the honesty here.

Our pastor has a podcast!  This week’s episode is a little long but covers a great range of topics (and they have lovely voices).

Happy weekending!

 

 

 

 

 

 

 

Finding your discomfort

Yesterday as I drove to church I heard the news that a gunman had opened fire in a nightclub in Orlando; it was a beautiful, breezy morning here in New Jersey, and on our way into worship we joked that it was the kind of weather we might find in the Florida Keys.

The sermon this Sunday was on Genesis 12, the call of Abram, and my colleague invited us to see how Abram builds altars along his journey to an unknown land, and to stop and notice what God is doing and what God has done with our lives.  We made a list of the adjectives that come to mind when we think of our own church community, recognizing, as she said, that we were different last year and that we would be different a year from now.

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Camels and Cairo on the horizon.  Photo by Evan Schneider.

But I couldn’t help being drawn, as she spoke, to a slightly different message.

As she remarked that Abram was near 75 years old when the Lord asked him to up and move to an unknown land, and that he didn’t know where he was going, I was struck, as I have been so many times before, by how being Christian does not have anything to do with being comfortable.  Flipping back through the pages of Genesis to the flood just a few chapters before or forward to the epic journey in the wilderness in Exodus, we find a God whose challenges far exceed his comforts.

What I find so powerful about this message is that while God is always instructing us to get up, to go, to go do something, or greet someone, or explore something, God does promise to go with us.  God often promises to go before us, but it’s pretty clear from scripture that we can’t experience the grace and the goodness of God just on our couches.

I think this message was so poignant to me, because I have been someone who has traveled to faraway lands many times in my life, and I’ve often associated my purpose or calling in ministry with that type of journey.  But for those of you who have been reading my blog, these past few years since we returned from China certainly smack of a more stationary season, and I’m not sure I realized until yesterday how important it is to find our wilderness even if we’re close to home.  In Abram’s story and the countless other narratives of transformation in the Bible, I see God reminding us that while some journeys take place closer to home, all journeys toward God involve some discomfort, some wilderness, and a lot of disruption.

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So my question to you (and my question to myself) this morning is where is God leading you, disrupting you, pushing you, and prodding you?  Where, like Abram, is your unknown land, the journey that will be long, involving pit stops and altars, and probably fear and regret?  But where will you go, not because you want to and not because it’s fitting, but because God is leading you there, and you want to be transformed?

When I turned on the radio after church, there was special programming from NPR about the shooting confirming that over 50 had died and now this is the worst shooting in our sordid national history.  On social media, my peers cried out for answers, mourned in solidarity, and wondered how things might ever change.  This morning, I’m rather certain that things won’t change swiftly, comfortably, or easily for any of us, but that real change, as it does in the Bible, will require uneasy, disruptive, totalizing transformation, that our country has clearly resisted since my childhood.

I pray desperately that we as people of faith may not just sit on our couches any longer but leap toward our zones of discomfort, following God and not our complacency, seeking disruptive love rather than cheap and easy respite–we can’t wall ourselves off from parts of our country or parts of our history that are dark.  We need to go toward them, scrutinize them, and even embrace them, in order to change.  

These were the words from a prayer in our bulletin this weekend:

 

Turn over the tables in our hearts, minds, and churches, and make room for your grace to dwell.  We pray in the name of the One who disrupts the world with love, Jesus the Christ.

Amen.

Why I’ve learned to see gifts where others see limitations

The tenure track job.

It came up again today in conversation and I heard myself explaining away Lucia as somewhat of a limitation, a barrier to my acceptance of a prestigious position at a faraway university, and the words stung on my lips.  I didn’t like the way they sounded, not because of what they necessarily made Lucia out to be, but as to what they failed to communicate about my life with her. We may not be in China or Europe or even the Midwest anytime soon given that moving, let alone traveling with Lucia is daunting, but I’m starting to see that parameters aren’t always limitations, but often, good and wonderful gifts.

When I focus on the things I can’t or no longer do as Lucia’s mother, I neglect the way in which our tax payment to the state of New Jersey took on new, holy meaning this year, as we’ve become so gracious for the services our daughter receives from the state everyday.  Even the fact that we are seemingly grounded here because of Lucia’s state services misconstrues the amazing provision that we just happened to have a special needs child in one of the states with the greatest benefits for such kids.  Lucia wasn’t accidentally born into such a blessing, but wonderfully, purposefully so.

And then there’s the incredible academic rebirth I’ve had as a result of learning to love Lucia.  Whereas I was already studying foster children with disabilities in China, my experience with Lucia pushed me to develop and teach a new course on “Disability and Difference” at Princeton, to write on my personal experiences, and to begin to combine my scholarly and personal pursuits.  My journey alongside Lucia to reconceptualize diversity, justice, and faith through the lens of disability has been revelatory, and I am so grateful for her guidance.

There’s a really mixed bag here because I often suffer with Lucia, and I also struggle to comfort her, understand her, and help her.  I feel firmly that Lucia’s daily struggles shouldn’t be eclipsed by my own growth or edification.  But several years after God acquainted me with foster families raising children with disabilities in China who made us want to become parents, then God granted us our one-in-a-million Lucia.  I seek to embrace what God has shown me as God teaches me so profoundly that my daughter is fearfully and wonderfully made.

Another thing that I see is God melding these seemingly separate lives–that of the scholar, the pastor, and the parent–in far more intentional ways than I ever could.  In other words, we have partially stayed in New Jersey because of Lucia’s special needs, but I’ve also stumbled upon an opportunity to minister and teach and care for my child here that is life-giving and good.  The gift of living life alongside Lucia has taught me that life is not always as it seems, because there is blessing in what God builds amidst difficulty, sacrifice, and challenges.

In a recent blog post, a friend of mine wrote about how much his son with special needs has taught him not just about life but about the Bible and about God.  The truth is so much of Lucia’s giftedness is in revealing to me my own limitations, in enlightening me in what God is already doing, and in inspiring me to be a better follower, servant, and mother.  Lucia shows me the fullness of life, not in her limitations, but in our mutual, challenging, deep relationship, and I am deeply grateful.  Lucia continues to push me to fulfill my purpose in God and for others.

I might have said then, that Lucia is hardly a limitation–rather she is a gift.

She is a person that has made my life so much more meaningful than it could have been otherwise.  From one vantage point, her life has placed certain constraints on my own, but I believe she has also grounded me to see and experience the gifts and the goodness of God anew.  She has pushed me to reevaluate that tenure track job, not because I can’t have it or she doesn’t want me to have it, but because it doesn’t necessarily represent promise, privilege, or prestige that really matters.  She pushes me to live a life that matters, a life worthy of the calling I have received: she makes me whole in a way I could never have conceived.

And so I say, thank you God, for this good and perfect gift.

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Lucia staring into her Daddy’s eyes during a recent hospital stay.  My photo.