Perspectives from disabled Christians enrich our theology

My recent book, “Becoming the Baptized Body,” owes its origin to a rather unexpected place: the waiting room of a multidisciplinary pediatric clinic. In this waiting room, where I’ve met countless families as an occupational therapist over the past decade, I encountered a preteen named Hallie and her mother, Heather (whose names have been changed for their anonymity and whose story is being shared with their permission). Engaging in some introductory small talk, I mentioned to Heather that in addition to my clinical work, I studied and taught theology at Duke Divinity School.

With this revelation of my bi-vocation, something shifted within Heather. Her eyes lit up intensely, and she began to lament her and Hallie’s experiences in the church. Hallie loves loud gospel music and being around people. She also uses a wheelchair and has an intellectual disability. Though Hallie is nonspeaking, she communicates her needs and emotions in a rich diversity of ways.

Heather longed for Hallie to be baptized. She recounted to me their family’s story of traveling from church to church, seeking a community of belonging. But Hallie and Heather couldn’t find this kind of church. Pastors and lay members of congregations told Heather that Hallie’s vocalizations were too disruptive during their services. In many churches, Heather recalled, Hallie couldn’t access Sunday school or the sanctuary in her wheelchair. And in one conversation Heather had with a pastor, she was told that it wouldn’t matter if her daughter were baptized, because Hallie couldn’t understand what was happening.

Hallie and Heather’s story of seeking a community of baptismal belonging is one among many stories, wounds and questions that disabled Christians in my life have recounted to me over the years. Their stories have shaped me into the kind of theologian I am today — a partner alongside Christians with intellectual disabilities, seeking to uncover how we might grow in love of God and love of neighbor more faithfully.

Over the past several decades, various theologians and Christian leaders have contributed to the field of disability theology. However, in this body of theological literature, perspectives from people with intellectual disabilities are few and far between. As I sat with the pain of Hallie and Heather’s story, along with other experiences of rejection from churches among my friends with intellectual disabilities, I resolved to prioritize the perspectives of disabled Christians in my own theological work on disability and the church. I committed to theology done in partnership.

With this commitment, I spent a year visiting Christians with intellectual disabilities around the state of North Carolina. We had meals together, worshipped together, sat in silence together and shared stories together. In short, we did theology together.

My partners included Christians like James, who watches a recording of his baptism on a weekly basis and, with this constant reminder of his baptismal identity, beautifully lives into his life as “God’s beloved son.”

My partners included Christians like Al, who repeatedly said to me that in baptism, he has truly become “who I am.”

And my partners included Christians like Ava, who witnessed to me that the practice of baptism serves for her as a gentle but steady assurance of “knowing who you are, where you belong with Christ.”

These partners in doing theology together have transformed my imagination about my own identity as a Christian disciple. Whenever I hear the story of Jesus’ baptism in the Jordan River, I think of James’ insistence that he, like Jesus, was named as God’s beloved in his baptism. And in these moments, I give thanks to James for his witness to me that I, too, am a beloved child of God — a reality that I too often forget.

When people ask me to describe who I am or what I do, I often think of Al’s insistence that baptism is the act where God reveals to us who we truly are — people welcomed into God’s covenant and equipped by the Holy Spirit with unique gifts for ministry. And when I feel isolated or despairing, I recall Ava’s assurance to me that remembering my baptism affirms my belonging with Christ.

Five years later, the fruit of our doing theology together is out in the world in the form of a book: “Becoming the Baptized Body: Disability and the Practice of Christian Community.” The book, dedicated to all those like Hallie and Heather who are still seeking a community of belonging, stresses the importance of thinking about how core practices of the Christian faith — prayer, Holy Communion and, most centrally, baptism — are sites where God’s action challenges us to take seriously the gifts of all Christians, disabled or nondisabled.

In close conversation with the stories and experiences of my research partners, the book explores disabled perspectives on baptismal practices, disabled interpretations of Scripture on Christian identity, disabled critiques of baptismal liturgies, and the rich possibilities for practicing baptismal preparation, testimony and reaffirmation that emerge from the witness of disabled Christians.

Though the formal work of this theological research has concluded, I remain committed to the work of doing theology together. My co-researchers and I share in decision making about where the royalties from the book will be donated. And as my partners read or listen to the book and offer me their thoughts, I commit to not only following up personally but responding in my ongoing scholarship.

When I speak in academic settings about this work of doing theology together, colleagues often comment on my work with “unlikely” theological partners — Christians with intellectual disabilities. I find myself somewhat puzzled by this characterization of who exactly constitutes an unlikely partner. After all, in my explorations of the intersections of baptismal identity and intellectual disability, I, a person without an experience of intellectual disability, am the unlikely partner in learning and transformation!

I wonder how in our own work we might find ourselves positioned as unlikely partners. I invite you to ponder how developing new ways of being together might expand your perspective, your wonder, and your learnings about love of God and love of neighbor.

Expanding our perspectives can begin as a small practice of asking a new question or seeking out someone we might not initially consider an expert. Becoming an unlikely partner might require us to reflect on the stories and wounds that others have shared with us — stories like that of Hallie and Heather. Reframing our work in the world as something we must do together might be energized by participating in a new kind of gathering, such as an event with L’Arche North Carolina, where people with and without intellectual disabilities flourish together.

May we be open to the transformation that comes in and through unexpected partners in a commitment to doing work, ministry and worship together.

When the pandemic first hit less than two years ago, our lives changed drastically.

As we adapted, the church found alternative ways to connect outdoors and online. Church members went on long walks together and learned to make themselves look presentable on Zoom with ring lights. Some pastors even relished the opportunity to rest, innovate and move with more agility than they’d dreamed possible.

Congregants who once hated the thought of online worship services discovered churches all over the world to livestream, trying new spiritual practices at home.

We found passing the peace with emojis over live chat strangely endearing. With the discovery that some church members now had more accessibility to the church than ever before, we had fresh conversations about inclusivity of people with disabilities and other vulnerable conditions.

Then, after people started getting vaccines, churches began to plan for the transition into a post-COVID era. Like many people, I looked forward to the respite of having something closer to normal again.

My pastor friends made careful preparations with staff to return to in-person worship, loading up volunteer rotations and creating reservation links to sign up to attend services at half capacity.

Some churches prepared to turn off their cameras for good, while others explored ways to have the cameras present but unobtrusive to attendees. A group of pastors and liturgical scholars even created a comprehensive guide for easing back into congregational worship this past spring.

But as we know, with the rise of the Delta variant and the failure to reach herd immunity, COVID is still here — and increasingly, seems here to stay. Hospitals are back to full and overflow capacity, and indoor mask mandates have been reinstated. Pastors have modified and even halted their plans for launching indoor worship services.

Now, instead of “pandemic fatigue,” I hear many pastors claiming “pivot fatigue.” The endless game of stop-and-go due to changing COVID-19 realities has meant constantly disrupted planning and programming for months.

In August of this year, I agreed to lead worship for a church volunteer kickoff event in preparation for indoor worship services. As we planned logistics around audiovisual support and song lyric slides indoors, our conversation flowed from the autonomic memory of pre-pandemic days.

I sensed excitement and anticipation in the air, a spirit of hope and forward movement surrounding us as we sought to bless the volunteers.

But halfway through the week, news of the Delta variant and increased hospitalizations emerged, requiring a new set of planning conversations. The excitement and anticipation for indoor worship pivoted again, as our plans hinged on the news and the event was moved outdoors.

Many scientists expect that COVID-19 will become a permanent part of our lives, with swells during the winter months, similar to the flu and other diseases throughout history that medicine has been unable to eradicate.

The COVID-19 pandemic will eventually become endemic, with reduced severity of disease, freeing us from the pressure of constant survival mode. “Endemicity as the COVID-19 endgame seems quite clear,” notes science writer Sarah Zhang in The Atlantic. “But how we get there is less so.”

This lack of clarity for the path forward is stress-inducing for churches and pastors planning worship in between a pandemic and endemicity.

Over the course of the last year and a half, many Christians have been sharply divided over questions of safe corporate worship. Tense conversations about mask mandates, proof-of-vaccination requirements and group singing have replaced past arguments about lighting, seating and moving the piano from one side of the pulpit to the other.

I’ve read numerous articles with differing theologies on conducting baptisms and funerals safely, and of course discussions continue on the difficulty of serving and taking communion physically isolated from each other.

Now, without a clear path or timeline into COVID’s future, I predict even more contentious conversations.

God is showing us yet another edge to our capacities.

By the grace of God, the church has managed to survive many a medical plague and pandemic throughout history, adapting liturgies and the sacraments temporarily and even permanently.

Developing creative adaptations and strategies for worship follows historical tradition, and looking to history encourages us to join with those who came before us in shaping worship during pandemics and beyond.

Worship adaptations also exist in the Bible. Various saints created rituals and acts of worship during times of wilderness and uncertainty, including gardening, washing feet, singing, dancing, tambourine playing, baptizing, preaching, retreating, speaking in tongues, serving others, loving neighbors and breaking perfume-filled alabaster jars, to name just a few.

The capacity to pivot logistically while remaining faithful spiritually serves as a witness to others to remain steadfast in faith on the way into the new normal.

With each pandemic “edge” we are shown, God simultaneously affirms the incredible gifts we possess to continue navigating the nebulous path to endemicity. With each pivot made, we model complete trust in God even at the expense of losing members or drawing scrutiny from others.

Those coming after us may not remember our best sermons or spectacularly planned Easter services, but they will remember how the church learned to survive and be faithful during the COVID-19 pandemic.

Our enduring legacy may just be surviving “pivot fatigue” and meeting God at the edge.

Holy Monday was supposed to be a detail day.

We had worked hard during the previous months preparing Holy Week and Easter services and sermons. After more than a year of pandemic, we had planned a meaningful and safe Holy Week, with remote and in-person services, including some inside the sanctuary and some outdoors.

And so our staff team expected to spend Monday putting the finishing touches on everything and pushing the print button.

Instead, Holy Monday became a hot mess in a hurry.

Our plans began to fray as COVID-19 numbers increased rapidly here in Michigan. After months with low numbers of infections and a steady number of individuals receiving vaccinations, the pandemic went from smoldering to inferno.

While the pandemic ramped up in our state, it also ran roughshod over our plans when our worship director (also our primary organist) had to begin a 14-day quarantine. This left us without a key staff member and musician, days before a series of 10 Holy Week worship services.

Months of planning had to be shifted in a day. All we could do was leap into Holy Week and Easter and build a plan as we went.

We relied heavily on a COVID advisory team that we had assembled earlier in the pandemic. This team, composed of local medical professionals, educators and government employees, had already been very helpful in developing safe and appropriate ministry plans attuned with changing circumstances.

We’d been meeting in person since February at half capacity, with masks and distancing (and an online option). Our advisory team suggested that we drop that further, so we set the limit below half and created an overflow section.

Now that I’ve had a little time to reflect, I’ve identified three unconventional strategies that proved especially helpful for our team as we led our congregation through this messy situation.

Disappoint everyone. Counterintuitive as it sounds, we found that a good overall approach for returning to in-person church is to disappoint everyone. This is not an endorsement of poor planning, recklessness or insensitivity. Rather, it’s a wise recognition that every decision is going to disappoint people in some way.

Some people will think that your plans for returning to in-person events are too slow and cautious; others will consider those same plans too swift and reckless. Unfortunately, the best path forward is often between the two extremes — where both sides are disappointed.

Leaders often assume that a lack of complaints is a good sign. However, that’s not always the case. It is said that effective leadership is disappointing people at a rate at which they can tolerate or absorb; this is especially important when lives are at stake.

If your plans for the timeline of return, frequency of services, number of people allowed and precautions in place leave everyone slightly disappointed, then you may be on the right track.

Control everything. If anything, this pandemic has demonstrated how little control we have. Our team had no control over rising COVID-19 numbers, nor could we control the timing of our worship director’s quarantine.

Nevertheless, in situations that are largely out of our control, it is helpful to ask, “What can we control?” We often have more control over situations than we initially think.

When our Holy Week began with a team member starting a quarantine, we immediately sought ways that we could control the situation as it unfolded. Although our staff was already following the recommended procedures for preventing the spread of COVID-19, we came up with additional measures.

For example, we had all staff conduct meetings during Holy Week via video conferencing or phone to minimize the possibility of other staff members becoming infected or having to quarantine.

Additionally, we came up with a backup plan for what to do if one of the preachers could not attend services in person.

Did we really control everything? No. But we did as much as we could. And this gave us confidence that our plans were not totally out of our control.

As you formulate plans to return to in-person worship, consider the following: What can you control in this? What is outside your control but could be anticipated with a contingency plan?

Wait until the last minute. This is not a suggestion to be haphazard, slapdash or idle in planning. Rather, it’s an encouragement to wait as long as possible, after diligently making plans, to enact them.

The pandemic has proved that a lot can happen in the course of a few days. The situation in Michigan is changing practically by the minute right now.

The key is determining how long you can wait to decide or communicate something to your congregation without waiting too long.

For example, we thought that the governor might make an announcement during Holy Week. Not knowing what this announcement might entail — but knowing it might include new restrictions — we considered what plans might be affected if this were to happen.

Would we have to move all services online? Would we have to limit even further the number of people attending in person?

Once we had considered these possibilities and how we might adjust accordingly, we decided what would be the latest date that we could communicate our plans without any negative consequences.

While Holy Monday was a hot mess, the rest of Holy Week turned out to be a wonderful experience for our congregation. We were able to joyfully — and safely — proclaim, “Christ is risen!” And, adding to our thanksgiving, our worship director completed quarantine without a positive COVID test.

It took some unconventional, even contrarian thinking. But the strategies we adopted can continue to bring some much-needed stability amid the chaos of returning to in-person church.

One of the main ways that church leaders try to encourage racial and ethnic diversity is to diversify their worship.

It seems logical, because having a diversity of people in front of the congregation encourages diverse groups of people to see themselves in the church. Build it like Revelation 7 or Acts 2, the logic goes, and a diverse congregation will come. Incorporate languages like Spanish and Swahili; plan a musical buffet of gospel, rock, salsa and traditional organ hymns — and anticipate the sound of desegregation and radical hospitality.

But it doesn’t work. Prioritizing diverse worship by hiring worship leaders of color without first implementing monumental shifts in openness to different cultures and multiple theological understandings can have the opposite effect.

Without changing the culture of a church, hiring worship leaders of color is simply tokenism, a false appearance of diversity. In the worst-case scenario, it’s a coerced performance of racial stereotypes. If churches truly desire to become multicultural, much more foundational shifts are required beyond simply hiring people.

To expect worship leaders of color to change the demographics of a church — to place them on the front line without first having done the difficult, necessary work within the congregation — is to set them up for burnout and failure.

My town of Durham, North Carolina, was affected by the 2008 recession like most cities in the United States, but we rebounded with aggressive economic and cultural growth campaigns.

From 2010 to 2019, some 40,000 new people flooded into our affordable city, and with the many new residents came a wave of pastors with a vision to build diverse and robust urban congregations.

In 2009-10 alone, I was talking at one time with more than 15 church planters in our city. All had a vision of solving the problem of racial segregation in churches in an ever-changing society.

To pursue this vision, some set out to hire diverse staff. I myself was a person of color hired by various churches and organizations, both locally and beyond — small church plants and megachurches, national Christian conferences and small campus retreats, evangelical and mainline congregations. I was hired as a church musician, music director, liturgist, worship leader and creative director to help realize the vision of a diverse worshipping body.

In planning worship, I frantically searched for all sorts of songs to fold into the liturgy. I prioritized instrumentalists and vocalists of color to serve and volunteer on the worship team and instituted an egalitarian process of building a song repertoire so everyone would feel represented. I rushed to arrange songs in different genres and styles — in which, often, my volunteer musicians had neither the experience nor talent to pull off. I practiced my Spanish pronunciation until my accent was acceptable.

In many cases, I did this work on a part-time salary. At the end of each Sunday, I was exhausted, stressed out and ever-closer to burnout. The many different styles of music confused my musicians, and some refused to sing in other languages.

In the end, as church plants became more-established churches, the congregations still skewed majority white, with a few people of color. As the only person of color on staff, I felt defeated, embarrassed and humiliated at my inability to carry out the vision. The white staff members’ responses ranged from, “Well, we gave it a try, and we can’t force these things” to, “Can we do more songs in different languages? What else can you do?”

Studies have shown that multicultural churches in fact perpetuate whiteness, the exact opposite of what they are seeking to do. In order to retain white members, interracial churches tend to preserve a core religio-cultural preference that is white, simply adding in a few people of color who are willing to forgo their own cultural preferences.

Gerardo Marti, in his seminal book “Worship Across the Racial Divide,” argues that a person of color hired in a worship role of a majority-culture church is also implicitly hired to be the cultural change agent. There is an assumption that worship leaders of color are experts when it comes to racial identities, racial power dynamics and racial history. This pressure is unjust and unfair.

Reading Marti’s work, I recognized what I was observing in each one of my worship settings: although the worship team was extremely diverse, the congregation was the opposite.

But as I felt the truth of these words in my exhausted body, I came to the conclusion that the experiment of creating diverse worship for a diverse congregation would require a comprehensive uprooting in order to change. To make a diverse congregation, one needs more than diverse worship; one needs an entire shift of culture, accepting diverse ways of relationship and theology.

Starting with leadership, there are areas in which multiple styles of meetings, conflict resolution and discussion can be explored and implemented.

For example, if I come in late for a rehearsal or meeting, my instinct is to slip in as quietly as possible, careful not to disrupt the flow. This reflects my cultural identity not only as an Asian but also as a woman and a Southerner. Others arriving late might greet each person by name, with a hug, breaking in to the proceedings to make their presence known. This may reflect different cultural values on greeting, hospitality and community. If we do not have discussions about cultural values, we may find ourselves glaring at each other from across the room, rejecting diversity because of assumptions about what leadership looks like.

But we need more than cultural conversations in churches. In order to create diverse congregations, we also have to embrace diverse theologies. I approach God very differently than my African American peers or my white peers do. I even approach God differently than my Hmong and Chinese peers do, although society would group us as a monolith. A significant step for diversity in churches should be an embrace of different theological understandings of God. This conversation is crucial to moving forward in multicultural churches.

I am sure that many church leaders have genuine desire in their hearts to foster desegregation and diverse worship. But we must not do so by placing worship leaders of color on the front line, to be exhausted and torn down by white congregations unwilling to change more than just their worship.