In the last few weeks, we’ve settled into a pretty natural rhythm with Lucia’s digestive struggles–constipation and screaming some days, vomiting others, and a lot of delight and sunshine in between. I feel like a broken record when people ask me how she’s doing, because we’re out of the woods we were in in 2018–pain management, feeding intolerance, hospitalizations–and yet, things are never easy. And if I’m honest with you and with myself, I’ve been feeling a bit weak and weary on this journey.
It’s an unsettling, even repulsive feeling for me.
I don’t experience myself as a weak person. I don’t experience Lucia as a weak person either. References to weakness in common culture, even in Christian circles, often smart for me, because it seems like we prefer to instrumentalize and capitalize on other people’s weaknesses, particularly and presumably those with disabilities and diseases, rather than feel or examine our own.
Perhaps the problem is the blame, the shame we instinctively attach to weakness–for my own part it’s attached to the responsibility I carry as Lucia’s mother, a teacher to my students, a scholar in disability, a pastor to others–the feeling that I’ve got everything to lose and nothing to gain in embracing, showing, or even acknowledging my weakness. You can’t be weak when you need to be strong. And in a culture where mothers are so often blamed and scapegoated for society’s anxieties and ills, how can anyone be honest about their own trials, their own weaknesses, their own humanity?
But here’s an even greater truth I know: we’re not meant to heal ourselves.
In fact, if there’s one thing Jesus’s ministry teaches me it’s that healing is first and foremost connected and relational. It can’t happen if we keep to ourselves. No, Jesus’s healing ministry invites us in, all of us. It connects people to each other, in our own needs and messiness as humans.
And at the very center of it is a weak Jesus who wants to be with us in our own weakness! I kinda can’t get over that truth. I struggle to believe it, really.
But what if weakness–vulnerability–is more like permeability, surrender, yielding, and surprise–elements that, like Jesus, are so not of this world that we rarely recognize or behold them as God with us, rather they are conjured and dismissed as mere weaknesses when they appear in plain sight?
So this Lent, I feel myself being asked to do this wild, holy, dangerous thing of living boldly in my weakness–letting you know that I literally forgot to have the oil tank filled and my house had no heat a few weeks ago because I was so scattered and thin. And even then, Jesus didn’t shutter or scoff at my humanity, but loved me (and people loved me, too) anyway. As mothers we’re pretty good at being with our kids when they’re weak, but we cloak our own weakness lest it makes us reprehensible, permeable, out of control, irresponsible. And so last Tuesday, after I took Lucia to her usual doctor’s appointment, she came long to mine. I’d been trucking along with a painful sinus infection, too busy and preoccupied (although clearly not with heating my home!) to even feel or let feel my own weakness.
But a little holy weakness may be just what our world needs–let us not forget that in all this bustle and brilliance and appearances, we are all on our way back toward dust. So in my dusty moments, let me be reminded of not just death but the hope and healing of the cross. I mean, you really don’t have the cross without a fragile, incarnate God made weak, and yet holy. And so if weakness begets sanctification, let me be bold in my weakness, heartfelt in cleaving to God and to others in this world that worships strong.
They are the social media forums that are the windows to our souls–an article about the lack of services for young adults with disabilities making the transition from school to work and out of the home is bookended by a comment from a mother whose daughter is only two and a half, but she says these are the very challenges that already keep her up at night. Another post in a Facebook group is from a mother who’s just given birth by emergency c-section but less than 24 hours later she’s writing to ask if there are other parents whose children had similar births. How were they affected? she asks. What did their futures hold?
A few weeks later I sit in the pews in the second week in Advent and the pastor up front tells us about a question put to her at the beginning of this school year that she’s still pondering in this season, over four months later, and she asks it of all of us:
“What are you waiting for?”
I am not waiting for my daughter to die, speaks a still, small voice inside of me.
It’s a statement that feels so foreign to my being that I’m altogether startled by it, as if I brushed up against it and now I’m disoriented and dizzied. No one waits for their child to die, I ponder…and yet we all do, in a way. In fact, how many of us really live our lives longing for, with an expectation for life, rather than death?
I think back to those message boards and I see people for whom the future is tyranny and agony and for whom waiting is shot through with worrying and fear, one might say even death and despair. As a parent of a child with a terminal disease I know that I would not be able to live with the tyranny of the future looming like that. I’m not saying that I do not have moments where I blink back tears, so starkly aware for just a moment that life without my daughter seems altogether bleak or meaningless. I have also had moments where her suffering seemed to be costing her too much in the land of the living.
And that thought didn’t come from nowhere. Clearly, I am not immune, as anyone who lives in this world, to the reality of the pain of death.
But I realized relatively early on that while embracing Lucia for who she was would mean embracing death, it would also mean living an extraordinary life quite impossible without her.
A few weeks ago as I preached that first week of Advent, ruminating on John the Baptist’s birth, a friend of mine pointed out that Zechariah and Elizabeth, like Mary and Joseph, would have their greatest longings for life granted in this child, only to find their greatest heartbreak in his death. Another friend of mine pointed out recently, and I’d never thought about it this way before, that these parents were living with children who had terminal diagnoses. Jesus was predestined to die a premature death.
But there’s so much more to the story, as we know. And Jesus’s story, even as it is often overshadowed by his bloody, violent crucifixion, was all about overcoming death–it was all about radiant, redeeming, everlasting–life.
What are you waiting for?
What are you waiting for??!
The question begins to scream at me. Because I can plainly see how the story of Jesus’s life, his parents’ lives, all our lives, are not so much about death, but about living life with abandon, with reckless, heartfelt love that bleeds out all over those around us who are suffering here on earth. What if that kind of all of us-all on love, is what life, not just death, is really about?
It strikes me that in this third week in Advent, as we light the candle of joy and we celebrate joy in Jesus’s birth, as well as Jesus’s life, death, and resurrection that the tyranny of the future really threatens to rob us of the joy of the present. That how we wait is as crucial as what we are waiting for.
So as for my family and I, the tyranny of the future can wait. We will go on living, looking for signs of life, not just in this season, but in every season. And we will wait with joy.
I was really humbled to preach the first sermon in Advent at chapel yesterday at the seminary. For those of you who have been asking, here is a transcript of the sermon.
Blessings on your Advent preparations!
As begin our journey in Advent this morning, we recall that the narrative of Jesus’s birth in Luke is intertwined with the parallel story of John the Baptist’s birth and his parents Zechariah and Elizabeth. In verses 5-20 of chapter 1, we are plunged into what Joel Green calls “the small town struggles of a little-known priest and his wife…the atmosphere is permeated by the piety of Second Temple Judaism and Jewish hopes for divine intervention.”
Now we’re living in a very different context than Zechariah and Elizabeth, but they feel like people we seminarians can relate to. They’re pretty faithful people. They’re really faithful people. Zechariah is a priest who’s given the honor of entering the sanctuary and offering incense in conjunction with sacrifices. The scripture tells us that he and his wife Elizabeth “were righteous before God, living blamelessly according to all the commandments and regulations of the Lord.”
But in placing their childlessness directly after their high religious and social status, the scripture isn’t just showing us their social disgrace but reminding us of their suffering. For Zechariah and Elizabeth who scripture tells us are “both getting on in years” we can only imagine that if they have been struggling to conceive for quite some time, they have likely known the pain of losing children, carrying hope and letting go of it.
And so when the angel of the Lord appears to Zechariah, fear overwhelms him and though he’s told he and his wife will rejoice at the birth of a son John who will be great in the sight of the Lord, he doesn’t believe it. “How will I know this is so? For I am an old man, and my wife is getting on in years.” We’ve been prepared for years for this, Zechariah thinks. We’re in the temple everyday, we’re faithful, we’ve prayed and yet our prayers have gone unanswered. How will we know this time will be any different?
I find some solace in this beginning to Advent, this hard place, this small story in which God comes close and carries out God’s very plans amidst our lives. But I struggle to believe, too. You see, I have been pregnant during Advent, filled with the expectation of a child, of hope, of new life, but I have also miscarried in this season. And a few years ago, during Advent, even after having a child, my husband and I were still waiting. Following our daughter’s seizures and hospitalizations, around 10 months they did some blood tests, they sent them away, and we waited for a diagnosis.
And when we got our daughter Lucia’s diagnosis, a progressive, genetic disease of the brain, I remember wanting to be prepared. I googled the symptoms, the treatments, the prognosis. “Death in early childhood” it read. And so I remember wanting to be prepared for when, for how, for what that would look like, so I googled a lot more. We got a diagnosis and now I wanted a prognosis. I remember wanting to be prepared.
But for what? So I could hold back just a little bit, so I could love her…just a little less? What?
Now I would be lying if I told you that as a parent of a child with disability and a scholar of disability that I wasn’t pretty uncomfortable with a text this morning that seems to use muteness, disability, as a punishment for doubt and disbelief.
But my own experience also makes me wonder if there’s more to what God is communicating here. Because I remember that feeling of seeing the beautiful child God had put before me and yet wanting even more reassurance that things would be okay. Maybe that’s where Zechariah was, too, after all that waiting, even with the angel’s proclamation, he just wanted reassurance that things would really be okay. Even the good news wasn’t good enough to overcome all his fears, his plans, his googling. Maybe for Zechariah and for me and for you, we have been tempted to continue doggedly on with our own plans, because at least it gives us some control. When we begin the story, Zechariah and Elizabeth are seemingly in control of their lives and where we end our lesson this morning, perhaps the problem is that Zechariah is still struggling for it. He’d rather cling to control than experience what God has in store.
And so silence that looks like a curse of Zechariah’s unfaithfulness may be the very reminder in this Advent season that God is active in our smalltown lives even when we don’t believe it to be so. That loss and heartache and suffering and pain are the very places where God seeks to meet us, but where we often try to control that God who wants to break into our lives and our world with radical, reckless love. The best thing that God did for me in that Advent season was not to give me a clear prognosis, a healthy child or a new computer where I could google my future to death, but like Zechariah, God invited me to lay beside my plans and just love the person in front of me. God gives us life to go on living, not always in the form of children, but always in the people beside us and the ordinary circumstances of our lives—reoriented, shifted, rerouted toward the extraordinary love of Jesus Christ, our savior.
That son who will be born to Zechariah, John, will go onto urge us to “prepare ye the way of the Lord.” But make no mistake this Advent, we are but participants in the saving work of God, Jesus, and the Spirit. Thank God that our preparations are not our own.
Case in point: for several years after Lucia was born, because she needed and loved (and still loves) to be held, I struggled to find just ten minutes a day when my hands were free to sit in silence. But in the last ten months, I’ve finally realized something: I’m much better at praying when I’m holding Lucia. If I’m in my office alone, like I was this morning, I’m surrounded by my books and my responsibilities and distractions, and when an idea comes to me, my hands are instantly busied, trying to scratch down that idea on paper before it flees. My eyes flutter open and my attention floats away from prayer to the day ahead of me.
But if I’m holding Lucia, I can’t use my hands. When my eyes open or rest upon something, they often rest upon her, subtly bringing me back rather than away from the intention of it all. Lucia’s voiceless expectation, the hopeful way her eyes dart and wander and peek up at me lead me back to the very present act of holding her, and being with one another–and our just being with God.
What I often count as an aberration, an intrusion from the true beauty and solace of our backyard view of nature–the screech of a large truck coming to a halt or a car horn blaring–Lucia accepts with diligent curiosity, reminding me just how fickle and narrow my own attempt at spirituality can be.
Indeed, it is only through this quiet discipline that I’ve come to realize that acceptance, such willful abiding in God’s presence, is anything but passive. Rather it’s what I continue to yearn for after all these years, and that God has placed beside me a great spiritual teacher in my tender daughter is not so much a great irony, but a sweet revelation. I’ve always believed that you do not need words to pray, yet even my own beliefs can assert themselves so willfully that the prayer become secondary. But I’ve never so palpably felt the resonance and profundity of that quiet as when I’m in God’s presence with Lucia alongside me.
It was one of the last few days of the semester, the time when spring is tempting summer and so this particular student and I had elected to head outside to talk. As we settled onto the picnic table, she thanked me earnestly for all that she’d learned over the course of the semester, for my passion for ministry and students and for the class, but as she looked toward the exam she was to write, she had just one final question, she said.
“Do you really believe, Dr. Raffety, that people with disabilities have gifts for ministry?”
I could hardly believe what I was hearing, questioning whether I’d heard or understood her correctly, as she went onto qualify, quite sensitively, but definitively her disbelief in what I had believed to be the central tenet of the course–the one thing I’d been trying to get across all semester. It was a mixture of righteous indignation and bitter disappointment and bewilderment that took over me in that moment: just how might I convince her? Where could I even begin?
But might it work much the same way with gifts? I wondered. Because able-bodied people are looking for certain types of gifts in people with disabilities, gifts they’ve seen before in other able-bodied people and thus recognize, perhaps they literally don’t have the ability to perceive other gifts because they’re hovering under the surface, imperceptible to the able-bodied eye?
Less than a month into our study, a young woman from one of the families we interviewed died. I’ll still never understand how just a day after her sudden death, her mother had the wherewithal to contact a group of lowly researchers to let them know, but she did. One of our research assistants dutifully went to the funeral. Not only at her packed funeral but in a subsequent follow up visit, her parents shared the tremendous impact the young woman’s life had had on so many people around her, but also what they believed to be her unique abilities. As I listened to the interview, I noted how confidently her parents asserted, “She was an excellent judge of character. If she didn’t like someone, it was because she could tell they weren’t genuine… We often learned to take our cues from her reactions to people because she could really tell so much about them just from being with them,” her mother added. All this hypersensitivity and supreme ability from a 30 year-old woman who had physical and cognitive disabilities, limited purposeful movement and no words.
Was this family, especially still fresh in the throes of grief, generously but falsely attributing super powers to their daughter with disabilities? Or might it truly be possible, perhaps especially given their daughter’s presumed dis-abilities, that she had a unique way of interpreting and interacting with the world that has something to teach us?
I’ve always smarted at literature that pronounces the gifts of people with disabilities in terms that are limited and narrow–they’re notable for their wonder at the world, their slow ways of being, their vulnerability, even their joy. Those don’t seem like bad things on the surface, but the sparseness, simplicity, and uniformness of them, the suggestion that people with disabilities fall into these staid categories primarily because of their disabilities does not take full stock of their complicated ways of being human in the world that include but aren’t reduced to their disabilities. Of course, yet another suggestion, that people with disabilities exist as objects, not subjects through which able-bodied people can get in touch with their vulnerability and brokenness as distinct aspects of all our human nature, is also quite offensive.
There’s nothing broken about my daughter, thank you very much.
However, if I’m honest with myself, I’m not sure I’d ever contemplated how my daughter’s own differences in communication, brought forth by her disabilities, palpably registered in her limited movement, vision, and verbal invocations, might yield not just gifts of relationship or gifts of perspective but simply, gifts. I had long noticed that even when Lucia’s gaze was positively fixed on the ceiling or when she seemed little aware of her surroundings, when her father walked into the room, she’d giggle knowingly and even turn to smile in his direction. With low vision and limited head control, it’s pretty clear that she’s not seeing him, but sensing him otherwise; we’ve suspected that she “knows” him by the sound of the weight his carriage (and only his) induces upon our creaky floorboards, because she doesn’t react to anyone else coming into the living room that way.
I’ve long believed that Lucia also knows we’ve come home to our house and entered the garage by the way the light darkens inside the van and the bump into the threshold, at which she always starts smiling and giggling. But just a few days ago, she started smiling even as we pulled into the driveway! And when we came home late from our vacation a few days prior and deposited her asleep into her bed that night, but she ended up in our bed when she was crying the morning after, when I carried her downstairs into the living room, even before I could pronounce that we were home she beat me to it, erupting into giggles, without so much as turning her head to look around the room!
And so, a few days later when the child study team from Lucia’s school called and kept talking about how difficult Lucia is to reach, teach, and communicate with, I kept thinking, are we talking about the same kid? Sure, she doesn’t roll over and she can’t purposefully reach for objects, yet somehow, despite having low vision and not being able to purposefully turn her head with much precision, she knows who her father is. What’s the problem here, again? I wondered. My perspective had been so altered by what we had been seeing in our research study that I couldn’t see Lucia the way they saw her; in fact, I corrected them on it. I told them I didn’t want to hear anything more about how difficult my daughter was. Wasn’t it their job to perceive where communication was already happening and magnify it? Why were they approaching her as if something was wrong with her when it seemed something was wrong with them? (They didn’t like that very much.)
When I responded to my student’s question in May, I spoke from my experience regarding Lucia’s gifts for ministry and the gifts of some people with disabilities in our congregation. Just a few days after, I discovered this beautiful article from Amy Julia Becker, that could have been the anthem for my course, intentionally titled, after all as it was, “Ministry with People with Disabilities.”
But I feel convicted that even my own musings as a researcher, a scholar of disability, and a parent have been necessarily limited and incomplete. Looking back on months of our ethnographic study with families with children with disabilities who are nonverbal, nearly every single one of the families notes the gifts of their children with ease; a dramatic portion of them question whether their children are really cognitively impaired or if it’s just the world that’s disabling them. It makes so much sense–we believe that intelligence and gifts come in so many different forms. We say that all the time, but perhaps we don’t really believe it. But it was from the family of the 30-year old girl in our study, the person who had lived the longest, whose family arguably knew her the best and was the most familiar with her, from whom the most precise, dynamic assertion of gifts came.
The conviction of this research project has been that people with disabilities have so much to teach us about communication and joy and spirituality if we would just have ears to listen. But my student wasn’t the only one who needs to be rid of her own prejudice and obstacles and ableism to really appreciate the gifts of people with disabilities. That’s a lesson I’m learning everyday. Indeed, I might have replied:
“Yes, I do believe people with disabilities have gifts for ministry, but sometimes I may struggle to see them. That doesn’t mean they’re not there. It means I have a lot of growing to do. But I’m thankful that God has granted me a glimpse of them and I will continue to pray that I can learn to see differently and honor what God is doing in them and through them. I pray that God grants you that, too.”
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.
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.
It was worn, tested, tried, and true. I repeated it probably millions of times over those earlier years when I first fell in love with the spiritual discipline of silence, of making room for God to move in ways that involved only clearing my mind, cultivating a space, and ushering in a countercultural reverence for stopping when the world refused to stand still.
Perhaps that’s why I’ve never really been able to get my mind around this word, why I’m not so good at abiding, or even praying about it.
I confess that recently my abiding has become dusty and decrepit, just like my centering prayer practice, beholden and bent to the cluttering of my life in which I’ve allowed little space for anything other than tasks and work and running–little space for silence, breath, let alone God.
And yet, in the recesses of my soul, God whispers more countercultural wisdom–that more can even be done with less rigor and muscle and strength. That, just as it’s been in the deliciousness of these last few mornings, when I’ve sat idle, letting the waking silence wash over me, I’ve felt most refreshed, most awake, most alive.
There’s this mystery about life with God, how when we resort to doing wholly nothing, that nothingness becomes holy in its luxury and extravagance, a sacrifice, an intention, a heartiness that can’t be achieved or earned and is yet, so much purer and better and good than all my blustery days.And that openness gives life and purpose and wisdom to our work and our justice and our advocacy–it exceeds us, because it so importantly comes for God and not from us.
Whether it was the clergy in full vestments, arms linked facing down gun-wielding white supremacists or the torch-bearers chanting anti-semitic threats, it is abundantly clear that theology is not neutral in 21st century America. And yet, in the wake of Charlottesville, many Christians have responded with opaque calls to unity and appeals to people of faith to “tear down the racial and cultural barriers that divide us.”
At first I thought such statements offended me merely as a cultural anthropologist.
You see, while it is powerful and poignant to condemn discrimination and racism, it seems a problematically ethnocentric, if not a positively white-privileged perspective to blatantly condemn “the racial and cultural barriers that divide us.”
Whose culture, whose race is dividing us? Perhaps it seems like mere semantics, but when Christians posit that culture and race are problems that breed division, that they are the very evils that need to be stamped out, we reveal that our calls to unity run dangerously close to the rhetoric of those who rallied in Charlottesville last weekend (even if that was not the intent).
Even though race is a social construct, we do see color and it has socially and politically relevant power and effects that especially white Americans must grapple with rather than ignore. The creative cultures that have emerged from communities of struggle and resistance among people of color in America are not barriers that divide us but rich resources to teach us about what America can and should become.
Not only do we have to choose our words carefully from an anthropological point of view, but we have to do so because the ministry and the integrity of Jesus Christ is at stake here. Countless Christians have boldly quoted Galatians 3:28 in the face of racial division: “There is neither Jew nor Gentile, slave nor free, nor is there male or female, for you are all one in Jesus Christ.” But Paul uses this passage to argue that all are liberated from the law and therefore, we do not need to become like one another to be in Christ and receive the gifts of the Holy Spirit; rather, in Christ, we can live as one with those who are radically different from us.
Indeed, we often forget that Jesus came into a culturally pluralistic world and honored the cultural practices in communities and peoples who were different from him, while preaching a gospel that sought to unify. There are certainly passages in the Bible that also justify slavery, genocide, and division, but when we look at the whole of God’s ministry arose history and in Jesus Christ and the Holy Spirit, I believe we do see that redemptive reconciliation does not damn culture, difference, and the sacredness of varied human lives, but the ways in which we human beings often instrumentalize these differences as division.
There’s nothing theologically unsound about unity, but unity that obliterates, objectifies, and undermines difference falls short of the vision God has for the fullness of humanity in Jesus Christ. Unity that maintains inequitable power structures is false and faithless. And unity that fails to listen and value the struggles of people of color in America is not only anthropologically unsound but theologically dismissive.
Of course, there’s so much more to read and do. But at the very least, let’s check ourselves from parading around platitudes about unity at the expense of diversity, especially in the name of Christ. Christians have got to stand for more than that. We owe it to one another and especially to Jesus.