If we were sitting together this morning having coffee I would tell you that life has lent its typical roller coaster as of late (seizure for Lucia- she’s doing great now, though; running over a deer carcass with my car for me-it still smells; no bus for Lucia’s first day back to summer school on Monday- a friend came to the rescue; nurse pulled out Lucia’s tube on Thursday morning-ugh; and we lost power on Thursday night during the storm-got it back early Friday morning)… and yet, as you see, with God’s help, we’re finding adventure in adversity and somehow holding it together!
Summer has been so full of unexpected joys–luxurious and productive staycation for us in June, thrilling aquatherapy sessions for Lucia covered by insurance and rides to and fro covered by Medicaid–even as it’s packed with challenges, too–I sent my book manuscript off to the editor in early June, have been teaching summer school at Princeton since July, and start a new job at the seminary in the fall. All this while the healthcare wars rage on Capitol Hill and we worry as Lucia’s care seems to hang in the balance.
If I seem distracted, unable to focus even in the midst of a sentence, it’s because I am.
But I’m trying to trust that (with the exception of maybe the healthcare battle, deer carcass, and tube being pulled out) there’s a real abundance, blessing, and excess in the way my cup is brimming over, inviting me to embrace this season in its chaotic fullness and to testify to what God’s doing with a life and a heart fittingly overflowing with joy.
So that’s what I’m trying to do (more on how that later), not living a life in response to what others are doing but a life that responds to what God is clearly doing, in a big way in my life, my family’s life, and in this world.
Still, if we were talking this morning, I’d look you in the eye and thank you but urge you to keep making those phone calls on behalf of people who are on Medicaid, who need assurance that health care will be there, not just for the healthy but for the sick, the poor, and the needy. I’ve put some links below that I’ve found helpful and important in wading through the excess of information out there. I did a podcast on Medicaid that I hope you’ll share with family and friends who want to understand its benefits and even as I still feel that families with people with disabilities face such an uphill battle in terms of understanding and coverage, I am thankful for all the support and hopeful that concerned citizens are making their voices heard.
I was reading Margaret Mead for one of my seminary courses yesterday: I sat there for like two full hours just reading and devouring–it was incredible, and this quote of hers that has been on my mind for weeks sprung to my attention. I leave it with you in hopes that you may believe that we can change the world, that God is with us even when we forget it, and that joy is abundant and ample and just as human as fear and defeat!
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 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.
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.
We’ve spent the last few weeks caring for our daughter who just had surgery. She was in a fog for about three days from the anesthesia and all the pain killers, and though she had no major complications, we felt like we lost her for five days or so to that medicine-induced haze and the severe pain she experienced intermittently. Leaving home last weekend and this past Monday to head to work was particularly difficult because she wasn’t fully healed (she still isn’t), and she certainly wasn’t yet herself.
And when people asked well meaning questions I felt most qualified to answer them from my experience–my husband and I were struggling so much with seeing her usual bubbly self all comatose and uncomfortable. Caring for someone who is in pain is painful. Despite the seeming wisdom of it, then, when people tried to move past the pain–“but the surgery was successful, right?” “But she’ll feel better soon,” or even, “Well, of course she’s in pain…”–it made me feel very misunderstood. It felt like other people were trying to look past the real pain and grief of my experience because it wasn’t very palatable, convenient, or acceptable. They wanted to resolve my grief for me, but when I came home and found Lucia limp in my husband’s arms or screaming in pain, I felt so alone.
Precisely because I was grappling so ungracefully with my own grief these past few weeks, I immediately recognized something similar in my students’ tear-stained faces, slumped shoulders, and speechless, flustering sighs the Wednesday morning after the election. Truth be told, given my own personal grief, I didn’t quite feel like beholding the grief of another. But something nudged me that a void remains a void (or becomes even worse) unless a leader, even a trepidatious and imperfect one, steps into it. And so, armed with some words of wisdom, some humility (after all, I knew that some students’ grief would be juxtaposed with other students’ celebration), and a deep conviction, I showed up to class that morning.
I showed up and told them I wasn’t really equipped to moderate their discussion but felt that we needed to acknowledge what happened, our varied feelings, but mostly that for the 15-20 minutes as a class we would covenant to make our space safe for all people, and to be respectful to especially those who were grieving. Many students cried, other students aired frustrations, some students tried to move forward. Very gently I nudged them back toward their grief. When one student tried to tell others they were overreacting, I did the same.
I tried to carve out a space where grief was acceptable and welcome, recalling how alone I’d felt just that past weekend when my grief had been too much for others to bear. It was only 20 minutes. My students have a paper due this weekend. Life goes on.
But I wonder sometimes what our country might have been this past week if we could have bore one another’s grief a bit more consciously and transparently and reverently over these past 18 months leading put to the election. It seems so much anger, righteousness, and denial in both campaigns speak to distinct places and manifestations of grief in more palatable clothes. It’s always more acceptable in America to express anger as opposed to weakness, righteousness over fear, blame rather than humility. But it feels decidedly too little too late when so many in this country were already hurting, but we mistook their grief for the ugly face-value emotions they presented.
Perhaps my greatest comfort in these trying personal and corporate experiences of grief is knowing that even when we fail, God’s empathy is deep enough for us all. When we think we’re alone in our grief, we never really are. But God is also not “on our side” as we in America are always tempted to think; God does not rejoice in our clanging campaigns of strength and righteousness but in our genuine holy moments of listening to one another.
In the dramatic days after the election, despite our penchant for progress, there have been holy moments of grief. They are moments we want to move past, but what if they’re just the beginning? What if they are moments that truly matter? I learned this past week that even when we are weak, God can make us strong. We can make space for those who are grieving to be heard, and while it may seem a simple step, it’s a vital one to healing.
We cannot heal if we do not break apart. We cannot lead if we assume God is looking for wholeness and greatness and power. Perhaps God can use us just as we are. Perhaps our lament is pleasing to God’s ears, too.
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.
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.
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.
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.
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.