For those of you missing the China posts, I miss China, too! I wrote a poem about it:
It is a spring morning in central Jersey.
And yet, when I emerge from my car in the parking garage, construction whirling in the distance, I am distinctly reminded whereby the crispness of this air, the particular squeakiness of these birds, and the unmistakable mix of blacktop and freshness of the same season in a city in South China.
Said city holds no particular place in the Chinese imaginary when it comes to urban notables; in fact, it conjures adjectives like “backwards” and “primitive” from the mouths of cabbies across China. But five years removed from my life there and cobbled sidewalks encased from endless traffic by massive palm fronds, I wonder if quaint is an adjective that one can put toward a city of seven million for which I am undeniably, yet foolishly homesick.
I recall how dodging the passersby dotting the sidewalk, I would sprint on a morning such as this, down to South Lake, and feel it my quiet oasis. In China, I learned the comfort of never being alone.
Despite the traffic that roared across the highway carving the lake in two and the never desolate state of the footbridge, pretending to climb but nay drudge up it in the dank humidity was my respite, my triumph.
Alongside the elderly people swatting their arms and strolling the banks or the young men in track suits with more ambition than athleticism, I felt deliciously inconspicuous, enfolded in the lush, yet urban landscape.
When I long for China, I like to think it’s not merely as a vagrant or a tourist but as an adherent and an old friend.
You see in China, I learned the distinct pleasure of anonymity alongside the crowded comfort of never being alone. There’s something pleasurable in recollecting that those runs along South Lake were never quite my own but belong dutifully and contentedly to the city they call Nanning.
However, as a scholar of disability and a parent of a child with disabilities, these headlines and their rhetoric sounded all the alarm bells. Surely a unified public that holds our erratic and impulsive president accountable to for his actions is to be welcomed–but not at the expense of the dignity of people with disabilities in America. Indeed, what is hardly subtle, but seemingly unnoticeable to readers of headlines like these and their content is the blatant criminalization and marginalization of people with disabilities in them. For instance, just try replacing “disability” in Will’s headline with any other identity, ethnicity, race, or sexual orientation, and suddenly Trump’s main reason to be feared—his presumed disability—reveals a startling prejudice toward difference in America.
Even if Will is onto something here in observing Trump’s inabilities, I suggest that he has inadvertently used disability as a vehicle to make the dangerous even more insidious, corrupt, and devoid of rehabilitation by appealing to some seemingly innate, suspiciously subhuman defect. Such rhetoric imperceptibly recycles previous tropes in the media that cast people with mental illness as unusually aggressive and pin gun violence on their disproportionate crimes—stereotypes that do not hold up statistically and are vestiges of longstanding cultural prejudices toward people who are “mad” or “insane.” The headline that highlights Will’s own words, “George Will: Trump has a ‘disability,’ is ‘uniquely unfit’” goes beyond these associations to imply that people with disabilities are somehow unfit to serve in office by virtue of their mental, physical, or emotional differences. The problem with Will’s tactic here and with rampant allegations that Trump has a disability are that they do nothing to cross this divide between able-bodied and disabled citizens, decry inaccurate stereotypes or effect genuine understanding. Rather disability remains but a vehicle and a scapegoat for our fears about Donald Trump or more disturbingly, a scapegoat for our fears about humanity.
Yet, perhaps the greatest issue with Will’s column is that by criminalizing people with disabilities, he not only perpetuates their stigma, but also draws attention away from the very discrimination that Trump himself, his cabinet, and his commitment to repealing the Affordable Care Act have reinforced against people with disabilities in America today. Who can forget the moment Trump cruelly mocked a reporter with cerebral palsy during his campaign, only to claim that it never actually happened? In her hearing, Trump’s Secretary of Education, Betsy DeVos failed to acknowledge the national purview of the IDEA, a piece of legislation that protects and guarantees education for students with disabilities; his Attorney General Jeff Sessions has also made derisive and deriding comments about children with disabilities. Finally, the GOP American Health Care Act that President Trump and Republicans just cheered as it passed through the House levels $880 billion dollars in cuts to Medicaid over the next ten years that would deprive people of disabilities, namely my daughter, from important medical, educational, and accessibility services. While George Will decries Trump’s dangerous disability and readers clamor to dangerously speculate themselves, these are the real yet hidden dangers of a Trump presidency for people with disabilities.
Meanwhile a month ago before the original version of the AHCA Bill was set to come before the House, I received a call from my Republican Congressman, Leonard Lance (NJ-7). When we hit connection issues, our call dropping nearly four or five times, he called me back again and again. When he finally got me, he took over fifteen minutes to get to know me as a pastor, a professor and especially a mother, taking a keen interest in my daughter who is thriving through a Managed Long-Term Special Services program (MLTSS) afforded to her through Medicaid. He told me one of the main reasons he was voting against the bill was to protect that program, as well as protect people on the Medicaid expansion. He understands and made clear that poor people and people with disabilities are the very people that should not be denied healthcare, no matter the changes Republicans or Democrats want to make. Last week, he kept his word and voted against the House Bill that passed; he didn’t vote with his party—he voted with people like my daughter and me.
I certainly agree with Will and his readers that real life bipartisan unity, the likes of which is offered by Lance’s vote and his positions on people with disabilities, is even more critical in the face of the House passage of the abhorrent AHCA, Trump’s most recent egregious firing of FBI Director James Comey, and the lack concern he shows for rule of law or the cares of his constituents. But if the biggest divides in this country remain not partisan but based upon fear of disability and its inhumanity, then we are in much more dire straits that I thought. I know far too well that when people ridicule Medicaid, they don’t think about kids like my daughter. When they see her, they often look past her, and to many, she may be a strain on taxpayers dollars, a basket full of preexisting conditions. But as a Democratic Congressman, Joe Kennedy (MA-4) so eloquently put it, “among the most basic human truths” is this unifying vulnerability of the human condition.
If we are to move forward, we must have the conviction to confront Trump’s ignorance, prejudice, and bigotry on the basis of this shared humanity, not on the backs of people with disabilities. We must make it clear that Trump is uniquely dangerous–but more precisely because of the way he has continually undermined the very humanity of people with disabilities.
For those of you who know me well, you know I’ve spent the last year reading almost everything I can get my hands on about the Enneagram and I’ve become somewhat of an evangelist for the personality tool among my friends and family.
Ironically my first foray into the Enneagram was not so entrancing–when I had to do a routine psych evaluation for ministry preparation, the instructor rather used my found type against me, arguing that perhaps it explained my aggression, hostility, and even atypical masculine characteristics! Among people who know the Enneagram well, it’s not a secret that female 8s get a bad rap and are often misunderstood. So that’s why it’s all the more profound that a few days ago, I think I finally realized what’s so powerful and meaningful about being an 8 in this world–a personality I haven’t always found so compelling or easy to live with.
Now if you’re new to the Enneagram, it may sound like I’m speaking another language. But simply put the Enneagram is a personality system that groups our personalities into 9 types, but unlike Myers-Briggs or other personality systems, you’re not easily diagnosed through a test, because it’s a dynamic, interactive, relational system. According to the Enneagram, the best parts of you are also the worst parts of you, so people don’t always find it “easy” or “happy” to find out their types, but thankfully, the system also allows for and encourages dynamic growth.
For my own part, and especially as an anthropologist, I think the Enneagram’s best, most basic reminder is that even if we’re from the same family, we don’t necessarily see the world the same way. But other ways of seeing aren’t bad; in fact, they’re what make the world a much more interesting and beautiful place! One of the best takeaways for me from learning the Enneagram is not just understanding myself better but also building more compassion inside myself for others in respecting and empathizing with the beautiful, perplexing ways they approach life that make the world a much more complicated, but fuller place. Essentially the Enneagram affirms one of the basic tenets of anthropology: our differences make us human!
Therefore, if you’re interested in learning more about the Enneagram and even figuring out your type, I’d recommend that you read about all the types, and perhaps in lieu of taking a test, read some of these great descriptions of each type, paying attention to the core values, the things that make you tick (you can scroll down for my suggestions for further resources below). Enneagram types are complex in that they don’t tell you what a person’s vocation will be or whether they will be successful, but rather tell you more about that person’s motivation in life and some of the challenges they face and gifts that they possess.
But as I mentioned, when a lot of people find out their Enneagram type, they recognize it primarily because of the flaws they can see so clearly in themselves, while they fail to acknowledge or hone the strengths that inhabit their way of seeing the world. As an 8 (with a 7 wing), “the challenger,” someone who is a natural born leader, makes decisions incredibly quickly, and is fearless, I had been really struggling with an experience of vocational discernment as of late. In fact, because of these impetuous and quick-witted qualities, I kept remarking to my “spiritual director” that I suck at discernment: the waiting game, the listening game, the methodical weighing of options is just not me. And as someone who is much more inclined to rely on my mind rather than my heart, I bemoaned my lack of intuition.
However, this type of thinking ignores some of the qualities which make 8s truly exceptional. Because of my gusto, I am truly and uniquely fearless. This certainly becomes a weakness in that I may struggle to emphasize and understand the insecurities others often face on a daily basis, but in my own life, when I see a challenge, I am invigorated, affirmed, and inspired. Sign me up, I think. I’m all about taking risks, I scoff. Bring it on!
Thus, in my life when I have been able to reframe uncertainty and discernment as a challenge, I’ve been able to very quickly embrace the adventure that God has in store for me, not worrying about the consequences or the trials of that risk but plowing full steam ahead. (As I told one of my friends recently, I may be a battering ram, but I can be a battering ram for Jesus!) What I’ve noticed in discernment and uncertainty, though, is that I have a tendency, as many of us do, to try to usurp control (how very 8 of me) from God. I spin into full-on planner mode, determined to think through the details of my future, when the very best that God has for me may not even be visible yet.
My spiritual director has invited me to ponder God’s faithfulness by asking me, “Think of the five greatest things in your life. Which ones were you responsible for? Now which ones did God provide?” Indeed, as a person of faith, in spite of any Enneagram personality knowledge, I am committed to living the life that God has for me. And I’ve realized that this involves abdicating my long-term planning role to God. Ironically, uncertainty and long-term planning are two things that in my penchant to control, send me spiraling out of control, leading away from my strengths and gifts as a passionate 8 who leads with vision and conviction.
I’m not alone in these insights, though. There are many, many people of faith who have begun to draw upon the Enneagram for wisdom not just about who we are, but who we are in God. For me, I’ve started to see how unique it is that I love a good challenge and that I’m not afraid, and I’ve become even more convicted to strive toward the unique vocation (somewhere between anthropology and ministry) that God has for me, even though the world may not always understand that call. 8s are often known for being resilient and strong, and I realize now that this takes “guts.” Even though I may lack for what I termed intuition, I am at my best when I’m relying on and hungering after God, throwing all of myself into that new challenge and adventure!
How has the Enneagram helped you live more fully into your purpose in God? What lessons have you learned about God and faith by getting to know yourself better?
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.
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.
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.
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.
We, like so many other parents across the globe, took our almost three year old to her first political protest on Saturday. And like so many, it was not necessarily the words of the speakers or the size of the protest that mattered so much, but the experience of standing alongside others in that damp, dreary weather and feeling the light and the warmth of knowing we’re not alone in the fight for the rights and dignity of all people in this country.
But when another pastor came up with his family to tell us that he had first started to take his now teenage son to protests when he was about Lucia’s age I have to admit that I was a little dismissive. Lucia would probably not be conscious of this protest anymore than ones she might attend in the future–in other words, I was emphatically aware of the cavernous difference between his able-bodied son and my disabled daughter, of his typical family and my not so typical one. Minutes later an elderly woman wanted to present Lucia was the paper crane she’d been fashioning while she stood beside us.
“Kids must be so bored at these things,” she whispered. “Perhaps she’d like something to play with.”
“Oh, well she can’t really use her arms,” I replied dryly.
“Well, can she see?” she persisted.
“No, not really,” I replied again, rather impatiently.
“But she can feel,” I finally acquiesced, flapping the tiny wings of the little bird against Lucia’s cheek to the woman’s contentment.
Even then, despite this woman’s resolute patience, I felt a pang of ambivalence. I perceived her persistence to be a reflection of her own desire to give her gift, whether or not it might be appropriate to give or whether Lucia could really receive of it. Despite the myriad of people who encircled us to tell us that they liked our “#disabled lives matter” sign and smile at our toddler with special needs, I realized how was possible it was to feel disconnected to the 7500 people with which we stood.
Nonetheless, not only the Trenton march, but the hundreds across the globe, especially the march on Washington, were an enormous success, and on Sunday as we stood in the church hallway, the other pastor and I chatted excitedly about what it feels like to be part of history. I remarked on how deeply moved I was by all the supportive responses to the piece I published on Thursday on this blog and Friday in the Huffington Post and how emotional it was when friends texted me photos of themselves marching in name for our daughter, Lucia, and disabled people across the country. But then again, almost before the words were out of my mouth, I realized I didn’t like how they sounded: I realized I was being dismissive again. I said something like how loved we felt, how Lucia had been so happy all day, but of course, she didn’t understand much of what really was going on, although it still meant something to us, to her parents.
“Oh, I don’t know,” my colleague replied graciously and carefully with something like, “I think love is love. I’m not sure we really know how people love, how it works, or how they receive it, but I think we can feel it. I think everyone can feel it.”
I swallowed, a big lump rising in my throat, and I thought about the pastor and his kids and the woman with the paper crane. I thought about the 7500 people marching in Trenton and millions of others across the globe. I thought about the words I’d written last week, and I realized that in the midst of calling for Lucia’s rights and for real love for her, I, too, have the ability to silence her.
It’s not up to me to decide what’s love or whether or how Lucia receives it. I realize that as much as I understand the reality of my daughter’s differences, I am not in a position to fathom what love really feels like to her, how she receives it, and how she experiences it. Those are my own limitations, and it’s not for me to constantly assert her differences when other people see common ground, or to presume that there’s a right or a wrong way to love her. I realize that perfect love isn’t about the most appropriate gift or words or gesture, but it’s about the desire to engage, to stand with, and to keep trying, even when the caverns seem massive and deep.
So with a humble heart and a contrite spirit, I realize just how tremendous and miraculous your outpouring of support has been, how deeply thankful I am to all of you not only because you’re fighting the good fight, you’ve got my girl’s back, and you’re doing everything you can to be a voice for justice, but because you remind me and are teaching me everyday about what love really means. You’re teaching me what it really means to let go and let Lucia love and be loved by you. And it’s not necessarily how I would have imagined it.
But thank God for that.
Thank God that despite our limitations, God somehow uses people to enable love to break through and remind us that God is love–that perfect love looks like undeniable kinship between so seemingly different families, paper cranes, spirited marches, letters to Congress, Lucia’s happiness, and so much in between.
Love is love and God is love and that’s why, despite our best (and flawed) human efforts, we’re never really alone.
P.s. The Betsy DeVos vote has been postponed until Jan. 31 so that gives you a week to call your Senator! See my previous post post-script (hehe) on why DeVos is bad on disability rights and how to call.
P.p.s. The Jeff Sessions vote could be as early as tomorrow! Call your Senator now to oppose and read this article to see why he’s bad for disability rights, too.
P.p.p.s. Letter writing is effective! Learn how here and please write to your Congress-people (you have one rep and three senators) asking them to protect state and federal Medicaid for families with disabilities!
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.
If we were having coffee today, I’d tell you that it’s been a thrilling week teaching in the Freshman Scholars Institute program at Princeton, talking with my new students (about Plato, Freire, Hitchcock, and Du Bois), and also hearing some of their stories and their passions. When I sat with them on Sunday evening during dinner, I noticed that while they were saddened by the violence in their country, they were not defeated by it–their hope for the future is inspiring.
I’d tell you how challenging I think it may be for me to keep a handle on my writing projects and professional goals with this busy summer semester course. A month ago at the Frederick Buechner Writer’s Workshop Institute at Princeton Theological Seminary, several workshop presenters talked about the efficacy of collaborative writing partnerships. In one pair, two academics set quarterly writing goals and checked in with each other on writing schedules once a week, also exchanging work, and talking about writing over a weekly call. I’m striving to set and keep writing goals myself and considering such a partnership as one possibility.
How do you keep your writing goals? What are your best tips? Would love to hear from you!
Finally, I’d talk to you about all the excitement and anticipation my family and I have about moving into a new house in the coming weeks. As you know, we’ve been living in other people’s apartments, and God’s been providing for us so effortlessly, but at this last stage, I feel the anxiety creeping over me. It’s been easier, I think, to be faithful with little, and I struggle with the grandeur and responsibility of moving into a bigger place. Also moving is just the worst, and the thought of that upheaval leaves me weak.
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.
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.
“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.
The Sunday morning crush–those moments after worship lets out and as a pastor you spiral through the gauntlet of requests, cordialities, and pastoral care where in a matter of condensed minutes nearly everyone wants a piece of you. Across these moments I struggle to keep track of all of the information, making mental notes, hoping against hope that I won’t lose the important stuff amidst the sea of bodies and sounds and breaths. And then, just as suddenly, one of our congregants with special needs descends upon me, with increased intensity and concern. She has seen something on the news that is bringing her to tears; he becomes angry as he struggles to remember what he just said to me; she can see nothing but darkness through the thick depression that plagues her.
I do not mean to paint disability here as unilateral or un-diverse, but many of the people in our congregation with special needs where their hearts on their sleeves. They plough into me, a person who’s a bit sensitive to touch, with eager, forceful hugs. They launch into detailed descriptions and litanies–lists of weekly activities without warrant and ad nauseum. They foist their feelings upon me in thrusts of emotion, seemingly without warning or reason.
And in so doing, they are deeply needy.
Their bare, disruptive, palpable need right there in the midst of more palatably, socially-aware displays of contained emotion, less barrier-breaking touch, and less audacious requests clashes with my own sensibilities. It’s too much, I think to myself, this business of trying to minister to folks with special needs alongside more “neurotypical “folks, which is the dance in which our church has become messily entangled over the past few years. I can’t help but think about the imbalance special needs present not just during Sunday morning but within the life of a church–how I, as a pastor, can’t shirk the sense that in attending to these needy folks other more subtle needs may be lost. In trying to provide classes and worship and counsel that is suitable for all modes of learning, my colleague in ministry, church leaders, and I may be spreading ourselves thin, engaged in some cruel, impossible quest to meet needs that are unreasonable and insatiable along others that are more comprehensible and predictable.
But in pondering neediness I am reminded of the poor, elderly foster mothers whom I met in China and the way their vulnerability rocked and assaulted the sensibilities of the orphanage monitors. Such women, many of whom had been abandoned by their own biological children, so desperately relied upon and needed their orphaned, disabled children to recreate life-giving family bonds in contemporary China. In their need, they reminded middle-aged orphanage monitors of their own failures to care for their aging parents or their neglect of their only children. They reminded these orphanage monitors, powerfully, uncomfortably, and disruptively of their own human and yet deeply repressed and seemingly inappropriate needs for love, compassion, and care.
And here I do mean to compare the need of these foster mothers to the need of folks with disabilities and to the needs we all have as human beings. I am reminded of Jesus’s ministry to deeply needy people–to the perceived inconvenience of the poor, disorderly women, especially those pouring lavish ointments over his head and touching the hem of his garment. I am reminded of the metaphors so often associated with need and disability–the unclean, the contaminators, the sinful–and I am aghast that in erecting divisions between people with disabilities and myself, I find that I am the one who is fragile, human, and sinful. I am suddenly aware that the crush of bodies on Sunday morning and these raw emotions, hugs, and pressing needs that seem so inconvenient and disruptive are both deeply human and deeply holy.
And I begin to see that ministry and life (for in Jesus’s life), were not and are not about balance or containment or arbitration, because then life becomes about division. Then I am led to believe that some people are needy while I am not or that need isn’t so fundamentally human, that it’s not part and parcel of Jesus’s incarnation and ministry. So I try and I struggle and I pray to let go of my economist tendencies and submit to such a mysterious ministry of mercy and care and love. I try not to mediate the crush; I try just to pay attention.
But I am also reminded that it’s not just paying attention, and how painfully aware I become in these moments of my own need–my need for self-acceptance, other’s acceptance–and my need for Jesus. And I become thankful that there are some in our midst who aren’t necessarily having such divisive thoughts or harboring such divisions, some who are so deeply, honestly, beautifully needy. I become happily convinced that “we” have gone about this ministry all wrong, for “we” have so much to learn. I become convinced, so richly and powerfully as I do over and over because of God’s ministry to us, that it is not I who is ministering but it is I who am being ministered to.