If we were having coffee, I would tell you how glorious May has been with its graduations (beginnings wrapped up as endings), breezes and flowers, and yes, even rain! The other morning when I saw birds whizzing around with big, fat worms in their beaks I realized how happy they were about the rain and it made it decidedly more tolerable!
When I began this year teaching in my new position at the seminary, I had braced for the challenge, the uphill newness of it all, but I never could have imagined the pride that has come at getting to know these students and having a small impact on their lives and ministry. This has been such a joy and yet, May has also brought necessary rest that I didn’t even know I needed. All of a sudden, the world seems lighter, more affable, with more space in it for creativity, thought, opening, and even play.
Lucia is thriving, too. She’s on a new formula that she’s tolerating so much better than in February or March. We’re steadily increasing her intake and speed, hoping she will be able to get more nutrition. We’re thankful for this respite, yet we know that nothing is forever or for certain. What we’re eternally grateful for is her sunny disposition through it all–in an overnight minor procedure last week, her smiles and giggles were so lovely to behold!
May is kind of the gateway to summer, so there’s also the fun now of expecting things. I put together my summer goals, which are quite simply fieldwork and revising my book on China, but I broke them down a bit on the whiteboard in my office. I realize that this time of year is so rejuvenating for me because it’s all aglow with ambition and possibility! Now if I can only realize these goals and maintain this steady pace of work and play throughout the summer.
On Friday, my husband and I take an overnight trip to New York City to celebrate ten years of marriage. We’re planning on dinner at the same French bistro I surprised him with last year. In truth, we’re forever trying to recreate our idyllic five year anniversary trip to Paris, which I’m totally okay with. I have the fondest memories from that trip and from ten years of marriage, with so many travels, our little girl, and a bright future ahead!
The other evening a few of my friends indulged me in asking about my summer research project on disability and joy. I yammered on a bit about my excitement about what I might learn from families with persons with disabilities who are nonverbal, and then my husband spoke up. He talked about the presumed extremes and edges for families raising children with disabilities, especially children with rare and life-threatening conditions like ours. “Either you’re at one extreme, devoting all your time and energy into fighting this disease and finding a cure, or you’re slumped over on the couch, defeated and depressed, resigned and remorse that life is so cruel and painful.”
Of course, I’m paraphrasing. Although my husband has spoken of these extremes often, down to the very way he first framed our public announcement of Lucia’s diagnosis, I’m not sure it had ever occurred to me how these hostile extremes prey upon and distort the reality of life as we know it with Lucia. Why didn’t I think to frame my project this way, I thought? After all, isn’t it this insidious framing that makes the pairing of “disability and joy” so presumably unexpected and rare?
These stereotypes about parents of kids with special needs, made it and continue to make it really hard for me to open up as Lucia’s been in a really trying and uncertain period of feeding intolerance as Lucia’s been in a really trying and uncertain period of feeding intolerance. In our first ethnographic interview for the project this week, one of the parents spoke eloquently about the burden of communication that’s placed on she and her husband to keep the world appraised of her child’s medical status and progress report. A few weeks ago on a Sunday where I’d finally resolved to open up about how overwhelmed my husband and I felt about Lucia’s feeding difficulties, I quickly found myself sandwiched between two platitudes–the one about God giving special kids to special parents and the other about kids being able to overcome their disabilities with hard work, and I just wanted to scream.
When well-meaning friends jump so quickly to wishing life was otherwise for us and striving to help we and Lucia overcome all her challenges, I feel shortchanged and silenced, because it starts to feel like our life’s everyday difficulties come as such disappointments to others, and then I feel the burden of having to help others find narratives of progress amidst our very chronic, circular story. Of course you wish the best for us, but when that comes at the cost of your narration and my silence, I can’t help but feel you’re wishing away so swiftly and expertly the difference between us, without acknowledging that that difference is where my family and I live. I know it may sound harsh, but in these moments I often feel as though people would rather experience my family’s thriving or failing as a spectator sport, watching from a distance, finding some sentimentality in it, and then going back to their regularly scheduled lives, buffered by that comfortable (manmade) chasm between us and our seemingly very different realities.
I’m aware that neither my humble ethnographic project nor my blog posts can suddenly or significantly alter the cultural scripts surrounding families with family members with disabilities (let alone people with disabilities, especially people who are nonverbal, but that’s for another post…), but I do believe there is great power in helping families tell their stories as they want them to be told.
When I came home from church that evening a bit emotionally battered and bruised, I thought about why those conversations stung so much. They stung because the truth was that amidst great hardship, I didn’t feel that things were just hard on the eve of Lucia’s fourth birthday, I also felt exceedingly grateful. And so I began to write parts of this post and I resolved to try again. Yet another Sunday, I told my story with its mix of grace and hardship and beauty and pain and joy, oh yes, deep, resounding joy, to a few members of another family during coffee hour. I remember the concerned look on their faces, their heads nodding, I don’t remember much of anything they said, but I certainly remember how I felt. To be accepted as I was, not really by their words, but by their nods and their faces and their hearts, was like a balm to my soul.
They did me the honor and ministry of letting my story hang between us, but what may have been slightly uncomfortable to them felt so freeing and resonant and powerful to me. I realized that I have tentatively decided to share my story on this blog over and over not always even so that others can understand, let alone feel better, but so that in this swarming world that buzzes and pulses and consumes and compresses my daughter’s life into sound bytes and platitudes and pity, I can simply hear my own voice. I know it sounds selfish to put it that way, but perhaps the battle that parents with kids with disabilities are fighting is not primarily one against disease or difficulties but against the perception that their kids lives don’t matter or that their kids aren’t like other kids or their families aren’t like other families, because they can be summed up in stereotypes that pronounce their differences in cruel, inhuman ways. The isolation isn’t primarily physical but social, one where you find yourself telling a story that should be yours but that either no one else wants to hear, or everyone else wants to narrate, resolve, and redress for you.
But stories always have more complexity, a life of their own, and depth beyond what we can ever imagine. They’re just one more fabulous aspect of what makes us human–that we all have a story to tell.
Thank you for letting me share some of mine. And thank you, most of all, for really hearing it.
I realized that it’s only fitting that I started blogging again yesterday during Lent, because as history serves, Lent has lent (I just can’t help with the puns…you know Easter is on April Fools, right?!) a good portion of inspiration.
So I’ve compiled, just in time for Good Friday, a dose of Lenten posts for your contemplative reading.
I pray that this season has been meaningful and full for you and that you find so much comfort and hope and peace even at the sight of our wounded savior on the cross. May we linger on that cross and the grave with renewed passion and waiting and expectation of the hope to come on Easter Sunday. Amen.
But as much as there is to share about what I’ve learned this year, there’s thanks in order to you, dear readers, for hanging in with me throughout all the feelings and frustrations and for your own listening ears, your caring, and your advocacy. Whether you’re a new reader, or you’ve been around for awhile, thank you for sharing our family’s struggle. I certainly hope you’ll let me know which posts continue to resonate with you, what you like best and what you like least about the blog, what you’ve learned in 2017 and what you’re looking forward to in 2018.
Here is a look back in hopes that these lessons learned from the year prior will carry us forward in making this world more just, more healthy, more good, and more compassionate:
The other week a colleague and I did a presentation for Ph.D. students about the job market. She told them that when she started looking for jobs her own adviser told her that it’s not that difficult to find a job, but to find a job that leads to or amounts to a career takes about four to five years on average in academia.
I could see the desperation and disillusionment in the students’ eyes, but deep inside, I sighed a bit. Her words reminded me that we so often look at others around us and all we see is where they are now, the fruits of their hard work, and we assume things came quickly and easily to them, probably—no–definitively, more quickly and easily than they came for us.
But what if that’s not the truth? What if I reminded you today that good things take time? And that the good things that others have, those took time, too.
See, despite my sigh, I saw myself in the eyes of those students. Here I am not even three months into my new job and I’ve been beating myself up a bit, because I haven’t made it around to all that much of my writing, I don’t have a clear three-year vision for this appointment, and I’m not sure what role I can or should play in institutional change.
But it’s been three months.
And my expectations crammed into those short months, for the next three years, reek of impatience, perhaps even faithlessness. I wouldn’t expect to take a new job in a church and within three months implement dramatic changes. No, I’d recognize and routinize the value in listening, observing, taking in what’s God is and has already been doing before ploughing boldly ahead.
So I’m drawn these days to something like the wisdom of percolation, to recognizing and valuing that if we people work hard for years beneath the shadows, then surely God needs time to work, too. That perhaps we’ve got it all wrong: time is not against us, but for us, in that it takes time to understand, to learn, and to grow, and God wants us to have and to hold and to enjoy that time with God. I would and can afford that time to my students, but it’s a bit more difficult when it comes to me.
But maybe, just maybe, I’m right where I need to be.
Both Dean Heller of Nevada and Susan Collins of Maine have recently announced that they will not support the bill! If you have a Republican Senator please call them everyday this week until the vote to ask them to vote NO on the AHCA, and you’re welcome to use our story! If you’re from Alaska, West Virginia, Maine, Nevada, Arizona, Colorado, Ohio, Pennsylvania, Louisiana, or Arkansas, these are key states where your senators remain undecided and you should definitely call and there are daily call scripts for those states available here. If you have Democratic Senators, make sure they are speaking out against the bill and willing to use any means to block it. But the best thing you can do is reach out to friends and family in the ten states above and ask them to call!
One of the beauties of this blog is that I don’t know all of you personally but I feel like I’ve come to know you over the years. And I’d love to hear from you. Please leave a comment in the comment section and let me know where you’re from and who you’ve called.
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.
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 fully 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.
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.
As I drove into work the other morning listening to a podcast, a woman on the other end proclaimed that time is in some sense the great equalizer–no matter who you are, from the president of a country to a mother of twelve, you only get 24 hours–you can’t stretch it or exceed it or reform it.
I have realized these past few days (with some help from my spiritual director) that my own expectations have crowded out my good work as I hold a hierarchy of ministry in my mind. As someone who has aspired to be a missionary and who has lived in abandoned bars and alongside drug addicts in Puerto Rico, sought to live in solidarity with migrants in Mexico, and slept on the floor of Chinese orphanages, I’ve always had this unspoken belief that the more uncomfortable you are, the more meaningful the work is that you’re doing.
And that’s honestly worked okay for me, because I have a high tolerance for discomfort. I suppose I consider it one of my spiritual gifts, that instead of being repelled from what’s different, I’m drawn into cross-cultural conversation and challenges and dissonance. But my life is not the hearty picture of discomfort that I once imagined it to be these days. Despite those limited 24 hours, I feel the need to do more, to give, to reach out, and I struggle with the limits I experience and my finitude.
But I’m learning a couple of important things little by little.
I’m learning, for one, that one person’s discomfort looks quite different than another’s. And I’m realizing that the ministry that God has for me may look different than what I imagined for myself. I’m realizing that the wide breath of ministry God has put before me–ministry with my daughter with disabilities, ministry with my students, ministry with my congregants, maybe even ministry through my blog–may have gone unrecognized, especially to me.
You see, I’ve always taken that verse in the Bible very literally about selling all your stuff and following Jesus and felt pretty crappy that I still have stuff. And part of that is really good, I think, because what I find so challenging and compelling about that verse is the reminder that aren’t people that are made for the things of this world.
But what if it’s all ministry?
I always tell my students and my colleagues that I want to imagine a world of abundance, a world in which everyone can succeed and thrive, because I really believe God to be a God of abundance. But ministry…the world as chocked full of ministry, relative only to us, but wholly instituted and appreciated by God?
Well, that thought, that reality, is blowing my mind.
When I realize that I can’t sell all my stuff because my daughter needs feeding tubes to live and standers to make sure her hips don’t come out of socket and a pump to keep her alive overnight and seizure medication, it’s rather black and white and shortsighted and unfaithful to assume that I can’t be faithful to God because of all of that. Those confines fail to reflect the love that God has grown in me for this child with disabilities, the theology that God has granted me to call Lucia good and perfect and really believe it, and the ease that I have and have always felt with people with disabilities.
That must be ministry, too.
As I looked around my life yesterday afternoon–as I walked back from ice cream with the first generation and low-income college students with whom I’ve spent the past seven weeks, and with whom I’d grown so thoroughly–I realized some people might call that classroom one of real discomfort. As I reflected on our little church that is a bit messy and inhabited by very varied abilities and ages and quite a few folks with special needs, I realized that some people might find that kind of worship truly arduous. And as I thought about my writing–writing that works to connect up all these disparate avenues, foster families and China and faith and academia and caring for a child with disabilities–I realized that I’m still one messy, drawn-into discomfort individual, but I simply don’t experience it that way.
I realized that even as I’ve been fighting for a ministry that’s meaningful, God has been equipping me in the one that’s here. I wondered in that moment if the choices I’ve made for my life aren’t so much right or wrong as tied into this purpose that may flaunt my expectations but dig deeply into the gifts God has instilled within me. And I wondered if perhaps the greatest discomfort I’m feeling about the challenge of being here and doing all of this isn’t the very discomfort that God has for me to grow within in this season.
As I walked back and the wind rustled through the trees, I thought I heard a whisper, “Well done, good and faithful servant.”
And for the first time in a very long time, I think I started to believe it.
I’ve probably let you know in spurts that sometimes it feels like summer, the presumed magical pause for many of us, has been on overdrive over here. With summer teaching for me, makeup medical appointments for Lucia, and moving for the three of us, it’s easy to see where the time has gone.
I’ve been blogging about this book draft that I’m eager to get out to publishers, and I’ve been a bit critical of myself along the way. You see, I wish I’d had it out to publishers like in June. That was really unrealistic, but you know how when you just want to get something off your plate and out into the world so you can move forward with other tasks and ideas?
But yesterday, with the last class of the semester complete, no meetings on my schedule, and lovely light ahead of me, I had a free morning. And instead of cramming it with burdened and anxious writing, I let my mind wander. A colleague of mine had suggested another scholar who could be an interlocutor for me on the ideas of vulnerability, kinship, and need that are shaping my book. And so I sat there for several hours without an agenda–I read and I wrote, dialoging back and forth with this other scholar about my ideas, without an end in sight.
And it was good.
It was good to be creative, to let go of the aims and simply pursue the thoughts and the ideas and trust that they would matter. I think I eventually ended up with some insights that will help revise the little parts of my introduction that need revision.
But maybe not.
And the strange math of the week is that I still feel that I’ve accumulated something really valuable. It’s the type of wild exploration that I’ve been begging my students to risk doing, despite the confines of their cramped summer semester. “Dare to dream big,” I’ve said. “Go for that big idea, take risks,” I’ve goaded them in their writing.
But I’ve got to live by my own wisdom. I’ve got to carve space out for these creative pauses that excite, entice, and beckon without ulterior motives. It’s the stuff of believing in the creative process, I think, but also believing in yourself. Trusting yourself to manage this precious time that you’ve been given and valuing that good ideas need room to breathe, that a lot of the best stuff seeps out of us when we’re willing to work for it, wait for it, wrestle with it, and knead it a bit.
If I truly believe that, too, then I’ll value and allow myself that morning in a coffee shop to simply think and wander because I’m not the sum of my accomplishments or my successes, but rather an artist whose thoughts and wisdom and goodness need to be lived out daily. While I tell my students stuff like this all the time, I think it’s been a long time coming for me to admit that I’m a bit of an artist when it comes to words and ideas–that I’m a thinker and a dreamer, someone who likes to spin and sew and create with thoughts.
So thank you, dear students. It seems I’ve learned something really valuable from you this semester. It seems I’ve been reignited with the fire and excitement that comes from thinking. It seems I’ve been given the freedom to explore again rather than put everything I do to a purpose, a publication, a deeper success.
And that feels good.
Thanks for giving to me this small, sweet truth. And I’ll do my very best to honor it with a pause every once in awhile and believe in myself just a bit more.