Tag Archives: difference

Why I’m grateful my child was born different

“No parent wants their child to be different,” she said passionately yet nonchalantly, looking innocently into the camera in this week’s premiere episode of a new season of the reality tv show, Little People, Big World.  She was talking about the possibility that their baby would be born with dwarfism, while meanwhile her husband, a little person, shifted uncomfortably in his chair, trying to parse the divide, forgive her somehow for saying that his very difference, one she presumably accepted and loved, was so naturally undesired, bad–something to be feared.

I don’t mean to pick on her specifically.

I think many of us bristle at the presentation of disease and disability as unwanted variations and aberrations in nature’s otherwise rather painstaking track record for miracles, successes, and beauty.  But what if I told you there were all sorts of dormant mutations in your own genetic material?  What if I told you that nature “makes mistakes” all the time and it’s just that some of these variations are visible while others are less so?  What if I told you that Lucia, my own daughter, was the result of one of those presumed “mistakes,” so rare, so different, yet so deeply loved and wanted?  Might that change your mindset that difference is always something to be naturally avoided or eschewed at all costs?

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Image Credit.

Underneath the reality tv star’s seemingly innocent words ran a subtle, yet deep vein of privilege and conceit.  Anyone who cared would prevent difference if they could, she presumed.  But different to whom, I wondered.  Black kids are born into a pretty inhospitable world, but it’s not their blackness that’s a problem but the normative white culture that devalues their lives.  Gay and transgender kids aren’t really all that different than any other kids and yet their difference is targeted as an assault on heteronormative culture that reproduces itself through fear and exclusion.  As long as difference remains the much feared, undesirable cultural alternative to healthy and white and straight and male, we desecrate the true variety and value of human life that God has made because we play God ourselves–even if it is ever so subtly with our wishing away of certain babies like mine.

The day after legislation that devalues the life of people like my daughter, people who are poor, people who are sick, people who are women, people who are victims of rape, and people who are old passed through the House, I still have the audacity to dream differently.  And I have my daughter to thank for that.  I don’t want to live in a world that she is not in, because I would not know the fullness of what God has given and imagined for human beings.

And yet, this world, this country specifically, is becoming extremely inhospitable toward my daughter month by month.  As a parent of a child with special needs, I want to live in a country that accepts and loves and cherishes children who are different– not with asterisks or snide comments or fearful glances or knowing pity or minimal health care or scant education–but full stop.  Don’t tell me how expensive my child’s medical expenses are or how arduous her special education is, how different her needs are from a typical child, how wildly incompatible they are with this cutthroat ability-obssessed culture we live in, because I really do know.  I know this isn’t easy because I’m living it alongside her.

But I made peace with Lucia’s challenges years ago; we’ve gone on living this incredibly full life and we’ve been buoyed by our church, friends, family, and the incredible array of services NJ Medicaid provides.  Our family has found refuge in a state that truly values her life, but for how long?  How long will you continue to live by the conceit or the privilege that your life is somehow any different from ours?  How long will you fear rather than embrace difference, support legislation that carves us off from one another by our differences, asserts hierarchy in nature when you know not what mutation, future, or controversy may come–legislation that makes health the luxury and priority of the rich?

Control over the progression of my daughter’s disease is a true illusion, but the choice to value her life and give her every chance possible–that’s firmly in your hands and mine.

And God knows, I’m still so very grateful that my child was born different.

*If you want to learn more, read this piece on “5 Things to Watch as GOP Health Bill Moves to the Senate,” and if you want to act on behalf of families like ours and kids like mine, call your Senator and tell them our story!

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How I know my daughter will be (more than) okay on her first day of school

I had this one fear when I realized that Lucia had Aicardi-Goutieres Syndrome and would likely live a rather unconventional life.  It wasn’t that she would be different–as an anthropologist (and a minister), I’ve learned to embrace difference, and the foster mothers I studied in China had enumerated the ways in which people very different from us often expand our very knowledge of ourselves and what it means to be human.

My fear wasn’t even that she wouldn’t be loved.  How grateful I am that I’ve never really feared that given what an amazing community of individuals God has placed in Lucia’s life who so dearly value her and endeavor to love her just the way God made her.

But I whispered to a few people and I worried in my heart of hearts that while Lucia might be able to receive love, she might never be able to give or express it.

I don’t think I worried it selfishly (although certainly naively), but I just thought about my own life and how much I’ve learned and received and grown by the very challenging act of learning to love others–not just receiving love–and I guess I couldn’t quite imagine, amidst days on end of shrieks of pain, colossal brain damage, and multiple disabilities, what that would really look like for Lucia.

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Lucia enjoying her balloons on her birthday.

On the eve of her first day of school and just past her third birthday, however, I not only finally see how much I underestimated her and God but how much a person can say without much purposeful movement, without words, or without rolling or crawling or walking or talking.  I underestimated how much joy can emanate from such tiny, immobile person–how by the age of 3 Lucia has taught me more about love than I’d learned in maybe three whole decades–how her way of loving would change everything I thought I knew about God and life and love.

“Do you think she knows you?”  people will ask my husband and me, and there are things we will tell them, like how she cocks her head and her eyes focus for just a split second when she’s really listening or when perhaps her limited vision has allowed her to take in some glimpse of the world.  Or how she recently started to erupt into fits of giggles when she hears her daddy make farting noises or how a slow smile seems to creep over her face when my husband or I set foot upon the creaky boards in our noisy house.  Or how there are times when you take her in your arms and she seems to wrap her rigid little arms around you in a way that makes you feel known and held and real.  

But it’s all very hard to tell or describe, because you can’t break joy or love down to a science.  How do you know your child loves you?  You just do.  There’s a feeling between you and it doesn’t go just one way when it’s felt–it’s a shared cultivation, this business of living and being loved.  And how I ever thought it possible for that love to be unrequited now feels so distant and so foolish and so naive.

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Celebrating Lucia’s third birthday this February.

And so I can’t really find it in myself to worry about how Lucia will do when she goes to school.  Lucia will do just fine.  We know she will grow so much by being around other kids and by learning and by moving–she’ll thrive in a social environment, for sure.  But those people around her–I’m almost more excited for them.  Because they will be loved with a joy so deep and so profound and so beyond any of our imaginations that they will grow in these ways that none of us ever imagine to be possible.

Lucia reminds me how much more there is to be learned from those who seem the least capable, the most impaired, the least adept at the things in life and that there’s something of God’s love in every speck of our beings however imperfectly or perfectly made we may appear.

We love because God first loved us.  Every single one of us.  Even my Lucia.

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.

Outside the walls

A few months ago I overheard my husband counseling a friend who was going to accompany us to a party thrown by a bunch of my colleagues in anthropology.  “You don’t have to worry with them,” my husband assured our friend, “anthropologists are interested in everything.  Watch, whatever you say they’ll find it interesting, they’ll talk about anything forever.”

It’s evidently what makes us quirky party attendees or hosts, but I like to think that our curiosity as anthropologists is also one of our best qualities.  We find the world more interesting, more beautiful precisely because of diversity and difference.  Life is more intriguing because of culture, because your corner of the world doesn’t look talk, or act, like mine.  And yes, I could talk about those fascinating differences in culture, well…forever.

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A foster mom in Anhui, China embraces her foster son. Photo by Jason Fouts.

On the last day of the class I was teaching at the seminary this semester, when I felt like I’d earned the right to speak a little of my own passion into my students’ lives, I challenged them to believe that they might learn just as much about God outside the Church walls or the seminary campus as within.  I asked them to dare to believe that pushing their faith to include, behold, embrace, and learn from people from a wide variety of cultures and backgrounds–pushing their faith to be real outside the Church might actually make it deeper, more powerful, and more poignant.

You see, I think that while it’s human to be curious, it’s also human to be really freaked out by difference.  And when we Christians get skittish, we often take a lot of the beauty and truth and goodness that God has blessed and made and called good and try to cram it into our manmade boxes.  I think good theology and good anthropology teach us to do just the opposite (like reminding us that Jesus blew the chains off women, tax collectors, diseased men and women, and prostitutes,  and included us Gentiles in salvation) (or anthropology that shows us how insightful, productive, and healthy cultural differences are), but we humans also like to be in control.

Anyway, I said these things to my students not only because they’re my truth but also because the next generation of spiritual leaders just might be our politicians, professors, doctors, lawyers, philosophers, non-profit managers, prison wardens, and community organizers.  A friend of mine had a conversation last week with a faculty member at the seminary who said her greatest concern is that we are preparing seminarians for jobs and a world that doesn’t exist.  A few days later, that same friend asked me whether I claim my Christian faith in community and what that means.

Being introduced this fall by my professor at the university for a presentation.  Photo by Evan Schneider.
Being introduced this fall by my professor at the university for a presentation. Photo by Evan Schneider.

And I realized for the first time in years of discerning and seeking and praying that I can say that I’m “out,” for lack of a better term, in my department at my university, as a Christian, a minister, a person of faith, and it finally feels right.  My colleagues happily introduce me as their resident pastor, they call on me for counsel in difficult situations because they know I’m not afraid of the messiness of life, and they even appreciate being told they are prayed for.

But it doesn’t just go one way–these same colleagues hold me accountable when I begin to complain or gossip, they counsel me through life’s big decisions, and they rejoice and grieve with me.  Both these experiences close to home and those afar of being ministered to by those supposedly outside the fold have taught me that the Spirit isn’t limited to the walls of the Church despite our unconscious, subversive efforts to confine it.  The prophetic isn’t limited to God-fearing people, and Christians don’t have a monopoly on Truth.

A temple in Luang Prabang, Laos.  Photo by Ben Robinson.
A temple in Luang Prabang, Laos. Photo by Ben Robinson.

Perhaps this is where my anthropology meets my theology so nearly, neatly, and dearly–in the enmeshing of the sacred and the profane in the everyday lives of people in culture, relationship, and meaning-making.  Real salvation is transcendent in that it seeps out of our pores to touch everyone we meet and everything we do.  And so I think theological education has to change to respond to not only this reality, but this Truth.  It has to equip all these people who are going to be outside the walls of the Church institution, and who will be ambassadors of faith and hope and love in this world.

I look around and I value and am inspired by both forms of leadership, service, and ministry–those inside the Church and out–but I believe the Church and seminaries have often been focused on internal ministry at the expense of the external, and our lives are lived, made, and redeemed in the everyday.

A Lahu church congregation in Yunnan, China.  Photo by Evan Schneider.
A Lahu church congregation in Yunnan, China. Photo by Evan Schneider.

Thanks for letting me talk forever and ever this morning about what I really find interesting in this beautiful, strange, sacred world.

P.s. You may notice the blog has a new look.  About time, right?  Everything’s pretty much the same except some of the links are to the right and on the bottom.  Thanks for stopping by and let me know what you think of the facelift.   —Erin