There have been all these memes and review about the rottenness of 2018: it’s very clear many of us are ready to say good riddance. It was not a banner year for our family either–Lucia had one surgery and two unplanned hospitalizations and both of those came during busy semesters. But, she and we also had one of the best summers of our lives! She was healthy and happy and we went on two vacations with friends and family.
When I look over this year, the lectures I got to give, the conference I got to plan, the articles I published and submitted, the major grants I’ve won, and the mentoring and ministry and preaching I’ve done, it means that much more that it didn’t happen in seasons where things were easy or seamless, and yet there is so much to treasure and cherish. Perhaps especially when things aren’t perfect, it really helps to look back. We rarely learn from triumphs and successes. We tend to just keep forging ahead. But disappointments, mistakes, and challenges are the sites where growth can take seed if we’re willing to own up to them.
In that spirit, I’m honored to share some of what I’ve learned with you in this year, and I invite you to do the same. What end of the year rituals do you have? What hopes do you have for 2019?
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.”
The other evening a few of my friends indulged me in asking about my summer research project on disability and joy. I yammered on a bit about my excitement about what I might learn from families with persons with disabilities who are nonverbal, and then my husband spoke up. He talked about the presumed extremes and edges for families raising children with disabilities, especially children with rare and life-threatening conditions like ours. “Either you’re at one extreme, devoting all your time and energy into fighting this disease and finding a cure, or you’re slumped over on the couch, defeated and depressed, resigned and remorse that life is so cruel and painful.”
Of course, I’m paraphrasing. Although my husband has spoken of these extremes often, down to the very way he first framed our public announcement of Lucia’s diagnosis, I’m not sure it had ever occurred to me how these hostile extremes prey upon and distort the reality of life as we know it with Lucia. Why didn’t I think to frame my project this way, I thought? After all, isn’t it this insidious framing that makes the pairing of “disability and joy” so presumably unexpected and rare?
These stereotypes about parents of kids with special needs, made it and continue to make it really hard for me to open up as Lucia’s been in a really trying and uncertain period of feeding intolerance. In our first ethnographic interview for the project this week, one of the parents spoke eloquently about the burden of communication that’s placed on she and her husband to keep the world appraised of her child’s medical status and progress report. A few weeks ago on a Sunday where I’d finally resolved to open up about how overwhelmed my husband and I felt about Lucia’s feeding difficulties, I quickly found myself sandwiched between two platitudes–the one about God giving special kids to special parents and the other about kids being able to overcome their disabilities with hard work, and I just wanted to scream.
When well-meaning friends jump so quickly to wishing life was otherwise for us and striving to help we and Lucia overcome all her challenges, I feel shortchanged and silenced, because it starts to feel like our life’s everyday difficulties come as such disappointments to others, and then I feel the burden of having to help others find narratives of progress amidst our very chronic, circular story. Of course you wish the best for us, but when that comes at the cost of your narration and my silence, I can’t help but feel you’re wishing away so swiftly and expertly the difference between us, without acknowledging that that difference is where my family and I live. I know it may sound harsh, but in these moments I often feel as though people would rather experience my family’s thriving or failing as a spectator sport, watching from a distance, finding some sentimentality in it, and then going back to their regularly scheduled lives, buffered by that comfortable (manmade) chasm between us and our seemingly very different realities.
I’m aware that neither my humble ethnographic project nor my blog posts can suddenly or significantly alter the cultural scripts surrounding families with family members with disabilities (let alone people with disabilities, especially people who are nonverbal, but that’s for another post…), but I do believe there is great power in helping families tell their stories as they want them to be told.
When I came home from church that evening a bit emotionally battered and bruised, I thought about why those conversations stung so much. They stung because the truth was that amidst great hardship, I didn’t feel that things were just hard on the eve of Lucia’s fourth birthday, I also felt exceedingly grateful. And so I began to write parts of this post and I resolved to try again. Yet another Sunday, I told my story with its mix of grace and hardship and beauty and pain and joy, oh yes, deep, resounding joy, to a few members of another family during coffee hour. I remember the concerned look on their faces, their heads nodding, I don’t remember much of anything they said, but I certainly remember how I felt. To be accepted as I was, not really by their words, but by their nods and their faces and their hearts, was like a balm to my soul.
They did me the honor and ministry of letting my story hang between us, but what may have been slightly uncomfortable to them felt so freeing and resonant and powerful to me. I realized that I have tentatively decided to share my story on this blog over and over not always even so that others can understand, let alone feel better, but so that in this swarming world that buzzes and pulses and consumes and compresses my daughter’s life into sound bytes and platitudes and pity, I can simply hear my own voice. I know it sounds selfish to put it that way, but perhaps the battle that parents with kids with disabilities are fighting is not primarily one against disease or difficulties but against the perception that their kids lives don’t matter or that their kids aren’t like other kids or their families aren’t like other families, because they can be summed up in stereotypes that pronounce their differences in cruel, inhuman ways. The isolation isn’t primarily physical but social, one where you find yourself telling a story that should be yours but that either no one else wants to hear, or everyone else wants to narrate, resolve, and redress for you.
But stories always have more complexity, a life of their own, and depth beyond what we can ever imagine. They’re just one more fabulous aspect of what makes us human–that we all have a story to tell.
Thank you for letting me share some of mine. And thank you, most of all, for really hearing it.
So full of inspiration, joy, and even need that I could burst?
My cup runneth over when I have conversations with students and colleagues who are discovering the beauty, the power, and the importance of culture, or when I hear the testimonies of people at our new church that affirm the importance of community and relationship.
My cup runneth over when our eyes are opened to the truth that relationships trump ambition, and so we lay down our fears, our brokenness, and our vulnerabilities for one another to bear. My cup runneth over when I pray for the deep needs of people I love, and when we speak together holy words of comfort, hope, and peace, our voices breaking, this world brimming with the subtle work of the Holy Spirit.
My cup runneth over when I hear how my sister serves as a woman called to ministry, as we in Princeton plan to receive Chinese friends and pastors from a faraway land, and as I speak with a young woman who has left behind a foster family in China and cleaved, beautifully and powerfully, to a new one in America.
Lord, we are the works of your hands. You lead us beside still waters, you restore our souls, you anoint us with oil, we bow before you, you dwell within us.
A month or so ago I heard an academic who’s written well-respected books, gotten tenure, traveled the world, and shot films say if she had it to do all over again she would have realized that her life wasn’t waiting to start after the dissertation, after she graduated from associate to full professor, after she got tenure, etc., etc., etc., but in fact, “your life starts now.”
This phrase isn’t just relevant to the academic world where we trick ourselves into thinking life and all that is good is marked by dissertations and tenure-track positions, but in all vocations, and the ministry that happens betwixt and between. The words of those faithful brothers and sisters from my church this past weekend, proclaiming that they’d always been a church made me think about my own ministry, and the ways in which, I’ve always been ministering.
Now it doesn’t always look like archetypal ministry, but I’m guessing yours doesn’t either. I’m guessing most ministry happens in snippets and soundbytes and sewers, not in pulpits and with pastors or priests. We minister wherever we are and with what we have to one another, and the efficacy of that ministry isn’t dependent on our education, our status, or even our resources, but rather our reliance on the Spirit.
But there’s another lesson in counter-cultural living, right?
Sometimes when people ask me what I’m really going to do with my life, when I finish these Ph.D. studies, or what the dream job I’m really aiming at looks like, and I can’t answer them, I feel afraid, embarrassed, and anxious. But I’m learning, slowly but surely, to be so grateful and so secure in what God has given me in this life and who God is that I can live without certainty about the next step or a linear trajectory, and yet with great faith that God will provide for me and for others and nurture my call.
When my mother took me with all my heart problems to Mexico with the youth group in high school, she had reason to believe she should leave me home. But if she had, I wouldn’t have felt the Spirit move in my heart in a familiar way but toward unfamiliar places, calling me to ministry on that US-Mexico border during college, and to Puerto Rico, Washington, DC, Princeton Seminary, China, and Princeton University. My mother showed me first what it means to have faith in who God is rather than yourself, someone else, or logical processes and trajectories.
Living as though your life starts now often appears irresponsible, because the steps of your path are connected by the movement and provision of the Spirit rather than your own professional progression or enrichment. But when you realize how much you’ve been given by that Spirit, how faithfully that Spirit has provided, and how meaningful it is to surrender the control we delude ourselves with, you get really grateful, glad, and confident.
So I’m learning when people ask me that snarky question, so what are you really going to do with your life? to smile with blessed assurance and to say confidently, “this is it, I’m doing it.” There’s ministry enough for all of us if we can just find a way to live by the guidance of the Spirit, to live as though our lives start now.
In 2007, I began a seminary field education placement that would lead to a part-time ministry during my Ph.D. coursework with a pair of multicultural congregations in North Jersey. One is a biracial congregation whose integrated demographics had survived the Newark Race Riots and welcomed a few African and Caribbean immigrants in recent years. The local community, however, had been in transition, and the church’s numbers dwindled as more and more Spanish-speaking immigrants poured into the area.
The other congregation meets in the sprawling building’s chapel and boasts members from nearly twenty Latin American countries. Forty-eight years ago they were established as a mission of the presbytery and they worship in their native Spanish, enduring the challenges of leaving families behind in unstable, impoverished, and war-torn countries, and navigating new immigration processes, jobs, schools, and life in a new country.
This past Sunday, members from both congregations gathered in the stately, hundred year-old sanctuary to celebrate something new: the Spanish-speaking congregation became a chartered and organized church of the Presbyterian Church (USA). We worshipped for three hours in Spanish and English, led by the youthful chorus of the praise band and the words of former interns, church members, local pastors, and even the moderator of the PCUSA.
For Evan and I, despite our Caucasian backgrounds and our recent two years in China, it felt distinctly, like coming home.
This was the place where my own call to ministry had been nurtured by these generous people who allowed me to pray for their struggles that I could often hardly fathom, who welcomed me into their homes, and who dismissed the jumbled Spanish of a gringa woman in their midst. I hadn’t realized until I looked around that multi-colored room this past Sunday what a powerful a witness these two little congregations in North Jersey had made.
I’d been the fourth in a long line of seminary interns, but the first who wasn’t from a Latino, Carribbean, or African American background, and yet, they’d hardly made me aware of that difference. They’d welcomed me when they had every reason to look at the color of my skin and hear my accent and find ample reason to keep their fellowship insulated from the America which often doesn’t show them anything like hospitality, equality, or dignity. They’d taught me when they had every reason to be suspicious of my willingness to learn or my ability to leave the privilege that had gotten me to halls of higher education and power at the door of that little chapel. They’d ministered to me when they had precious little, the English-speaking church few members and resources, the Spanish-speaking church little funds or time to spare given their busy lives caring for children and working several jobs.
But as we celebrated on Sunday, as ministers struggled to characterize the length of their struggle as forty-eight years in the wilderness, as waiting on the timing of God, the members of the congregation who got up to speak subtly, yet confidently proclaimed the truth that despite the importance of what was happening that day, they had always been a church. They didn’t need (and hear I sound like a bit of a Presbyterian heretic but I’m willing to take that risk) the approval of their denomination, a piece of paper, or a service full of pomp and circumstance to allow them to minister, because they’d been doing it, for those in the community, those in the church, and people like me, for forty-eight years.
Their ministry reminds me that when we take what little we have and we put it into God’s hands, far greater things than we could possibly imagine come to pass. The trouble is, we’re usually so hesitant to trust, so hell-bent on recognition for our service, and so afraid to believe. It’s counter-cultural to take everything that you have, especially when you don’t have much, and faithfully thrust it into Jesus’s hands, it’s counter-cultural to minister without much recognition to communities in need, and it’s counter-cultural to admit those to your fellowship who don’t look much like you and in fact, represent a lot of the power structures that give you hell on an everyday basis.
Over the years this Spanish-speaking mission, now chartered church, has trained sixteen interns and raised up twelve candidates for pastoral ministry in the PCUSA. Those are stats that congregations with three times their size and three times their history only dream of. But somehow along the way this little church has understood that miracles don’t happen by our own muscle, but by God’s grace, and that faithfulness is not for the in between times, but faithfulness is what life is all about.
They have always been a church. They have always been ministering. Thank you, Iglesia Presbiteriana Nuevas Fronteras, and United Presbyterian Church, for always ministering to me.
I had a week off from teaching last week, which I’d made plans to fill with rest and dissertation-writing. And then people started showing up in my life in tears, in shambles, wanting to talk, and asking for my help.
In some ways the hardest part of these conversations wasn’t the real suffering in the midst of this world, but the ways in which each person couched their requests with, “I know you’re just as busy as the rest of us, but…” or “You must be so busy, but…” But the fact was, for once, I wasn’t all that busy, I had space and time, more ample than in any other week, to listen, to soothe, to pray, to drive someone around.
I was so grateful to God for filling that break with ministry, for using my time so much more wisely that I would have, and it’s led me to think whether this “I’m not busy” thing could become a way of life. You see, I started to like the way the words felt on my lips, the way the extra time, space, and the whole mentality made me a more careful listener, a more gracious friend, and a willing servant. In the end, I’m pretty much convinced that there are only two ways to live this life: “being in control,” which amounts to swimming desperately upstream, kicking ferociously against all that we’ve been given, or well, going with the flow.
What’s so interesting is that we, in all our foolishness, often call this gasping for air and feverish kicking, living. We call it busyness with self-important sighs and cluttered calendars, and we trick ourselves into thinking that it’s some pinnacle of achievement. But when we retreat to our homes and our families and our friends who actually know us, we find that “being in control” is inordinately heavy. These calendars and commitments– they weigh us down, sapping the life out of us, one forced smile at a time.
These past two weeks, I was forcefully reminded that I don’t want to be in control of my life, because God has other plans. As people of faith, we are invited to experience the opposite of control, we’re invited to feel weightless, in that we’re to collect burdens for one another and cast them all onto Jesus. Of course, it’s an idealistic vision of this life, but it’s true–it’s what God wanted for us. We Christians are so passionate about ridding the world of sin, but perhaps it’s no wonder that feels so heavy and so busy and so burdensome when we take it all upon our shoulders. We hardly have hope of weightlessness when we’ve become so competitive about who’s carrying the heavier load.
Now it’s possible you’re reading this today and you’re feeling out of sorts, because I’m talking about lightness and your load is heavy: you’ve got three mouths to feed and two jobs, or family members facing cancer and death, or uncertainty and pain in your marriage, or children doing drugs and hurting themselves in heartbreaking ways. I’m not in your shoes, and I can only imagine how hard, unjust, and stressful any and all of those real life situations can be.
But I’m also not hoping to turn being available, open, and free (like being busy) into a competitive sport either. The fact is, if you’re working two jobs because you’ve got three mouths to feed, or your thoughts, prayers, and time are with a family member who’s sick, a spouse who needs you, or a child, life probably is pretty heavy right now, and you’re probably right where you should be. In fact, what I’m proposing is an economy of mercy, where we who are choosing to be busy and distracted, stacking up appointments and zillions hours of work a week, might hear and honor the people in front us who need us in these real life moments. And someday they’ll do the same, and we’ll all be a little more aware that we need Jesus and forgiveness and grace, and that’s the stuff life’s really all about.
For me, one week of really not being busy turned into a second week of believing it. Many times when I said, “Oh I’m not busy,” people didn’t really believe me, and at first, it felt awkward and trite. They thought I was mocking them, which is sad, because even when I was full of joy I think the reason they couldn’t believe me is because we’ve all made connection and caring and time slaves to our schedules.
But I kept at it, I kept believing that God had brought my friends to me and God was going to be faithful to worrying about those details of scheduling, dissertation writing, lesson planning, and proposal writing, if I could just be present with that person in front of me. And I could tell that my friends knew I meant it at some point, that it wasn’t that I’m not busy, that I don’t have things I could be doing, but that I was exactly where I wanted to be, and that when we’re there for one another, this world gets a little bit more graceful and that little bit is God in us and with us.
So I’m proposing a mini-revolution of sorts, a big screw you to the idolatry of calendars and appointments and modern life, and an invitation for you to tell someone this weekend or this coming week, “I’m not busy.” They may not get it– after all, you may be the busiest person they know, and then it will probably mean that much more.
But the best thing will be that when they see that you’re really serious about not being busy, that you’d rather listen to them than do anything else with your time, they’ll not only feel free, but so will you. You’ll find that God is faithful to carry all our burdens and so much more, and somewhere along the way, you won’t actually feel busy anymore. Even though you still have a million things you could be doing, you’ll feel so miraculously weightless, and best of all, you’ll find God leading the way.
If we were having coffee this morning, I would tell you that we’re entering the fourth week of my course at the seminary, and it’s already been such an incredibly rewarding, exciting experience. The most fulfilling part is that I don’t feel like I have to sell the students on the fact that culture, family, and ministry go together. They believe that twenty-first century ministry is all about embracing and negotiating difference, and they’ve been so affirming over email, coffee, and in person that this is a course that they need: praise God!
I would also admit that when it comes to my dissertation, I’ve been working hard, but it feels like the writing is being cobbled together, and all the cracks are showing. I’m trying to be brave and believe that even in academia, we can let some of these cracks show, learn from one another, and find grace in life’s seemingly most unyielding moments. I’ll let you know how that one works out…
It’s Chinese New Year in my other home these days, and despite the fireworks and the fanfares, for the foster families in Guangxi it’s often a difficult time of year as the weather turns wet, cold, and unrelenting. A wise NGO worker I knew once pointed out that for children in orphanages this is the loneliest time of year, when they’re reminded they have no family to celebrate, no grandparents to travel home to. I’m praying for protection and warmth and possibility for the foster families and healing, love, and peace for all the children. Happy Year of the Snake!
As for me and God, we’re just hanging out. No agendas, just me accepting and reveling in God’s unconditional love.
This week I realized that despite how wonderfully God is integrating my academic and my spiritual lives in this course at the seminary, in conversations with colleagues and professors, and even in my dissertation writing, I had become restless. In my prayers, I was setting an agenda for the time I was carving out. Instead of simply rejoicing with God, I’d moved on in my mind to what was next, to how this all could possibly be so neatly integrated in a future in which I’d be forced to choose between academia and ministry.
But it’s not my job, it’s never been my job, to hold all those pieces together…it’s God’s.
And I hear God saying firmly, let me do my job and just let me be with you. (It’s a thrilling revelation by the way, when you realize the almighty God just wants to be with you!) And when I let God pour God’s peace into me, filling me to the brim, I’m not only reminded that my plans and agendas are the stuff of this world, but also that God’s peace makes me a better pastor and professor. It’s funny how God volunteers to carry our burdens but we’re the ones who keep snatching them away.