Original Article Posted to Yale: Reflections
Though sculpted in Europe for sport and crafted to my exact specifications—the Bugatti of crutches—my sticks are Inescapably Medical in appearance, the tools of a person who is long accustomed to moving about with effort. Propped up against the communion table, the crutches are sharply visible against the clean white of the tablecloth, where the perfectly shaped loaves and the surgically separated bread pieces evoke Christ’s wounded body, with minimal crumbs. The people wait to ingest the symbol of brokenness in their bellies, served by a pastor who leans on the solid wood table for balance. “This is my body,” I say, the bread held as high as I dare.
We need disabled people to help us all learn how to adapt to the future, to move more intentionally, and put to work the variety of gifts that make up the kingdom of Christ. We need misfit leaders for our misfit gospel.
The church where I grew up and now serve as pastor is experiencing what the vast majority of Euro-American mainline churches are going through: a steadily declining membership due to death and attrition; a struggle to attract young adults whose energy is divided between dual professional careers and their children’s weekend sports commitments; a commitment to the gospel in an increasingly polarized society that makes people weary of hearing anything more than grace-filled pleasantries from the pulpit. In a world where church affiliation is no longer a given and the public priorities of the institutional church are irrelevant to the vast majority of our neighbors, the message is clear: adapt or perish.
“Adapt or Perish”
As a disabled person, I have the concept “adapt or perish” written in my bones. Growing up with cerebral palsy meant being dependent on my parents, and later on my friends, for everything from getting dressed in the morning to moving between classes at school. Physical adaptation was followed by emotional adaptation; I perceived my body’s dependencies as such an inconvenience that to ask for anything beyond survival felt selfish.
Because I was mainstreamed in educational settings, the only other contact I had with disabled people was in the doctor’s office where we snuck looks at each other while our able-bodied parents flipped through old magazines. In the early 1990s there was no positive representation of disabled bodies in popular culture. Never expecting there would be, I did not notice the absence. Disability was something to be ignored when possible and overcome when not. “I don’t see you as disabled” was the grand prix, awarded by admiring mentors who could speak with eloquence about race and gender, but who never uttered the word disability in any of the classes I took in my progressive, social-justice-focused school. It was not until a college professor offered a class on disability and literature that I had any idea that disability was not just a medical word denoting “broken.”
Lifting the Veil
Though my first foray into disability studies pulled back the veil, it was far from a transformation. I read hungrily, but approaching adulthood in a disabled body brings its own set of challenges. As classmates paired off and planned weddings, I had no idea what the future held for me. I did not know anybody that looked like me that got married or had children or a normal job. I did have generous parents who paid for my education. And I had academic drive and a hunger for big questions that allowed me to attend divinity school.
YDS was a heady, complex time where I felt drunk with intellectual stimulation, the constant company of friends, and a sense that these tools we were learning could save the church and change the world. We were being trained for tall steeples and high pulpits, for leadership roles in academic and denominational institutions. And as we filled our sleepless heads with coffee and cheap beer, we talked about bodies non-stop: women’s bodies, trans bodies, nonbinary bodies, pregnant bodies, gay bodies. We talked about the beauty of bodies, and how the church had tragically followed Paul down into an abyss of distrust of anything that breathed or moved or loved, and it was up to us (us always) to save it. And yet, disabled bodies, broken bodies, twisted, sick, and awkward bodies were rarely mentioned other than as a people to be ministered to or inspired by. Not wanting to be anyone’s charity case, much less anyone’s inspiration, I stayed quiet.
After divinity school I served as a chaplain in an acute inpatient mental health facility where my disability was the frequent topic of conversation among those with whom I shared my days. From the young woman who used to clutch a stuffed bear and sob when she saw me (“Oh dear God, I could end up like you one day!”) to the elderly patients who pressed their dry, cool hands to my forehead and prayed for my healing, I got used to my disability being part of the mix. I had always been afraid of learning what people truly thought about me, and now I knew. The reaction of some was just as awful as I feared (see the stuffed bear-clutcher). For others the encounter offered a sense of profound connection. Still others showed utter disinterest. In any case, I found even the worst of it was endurable.
The Dreaded Processional
It was one thing to have my disability addressed by patients in the topsy-turvy world of a mental health hospital, but parish ministry was a different story. In my church, Presbyterian in every sense of the word, worship is scripted and choreographed like the Handel organ pieces that herald the passing of the offering plates. For years I spent my energy figuring out how to baptize babies without holding them (FYI, the easiest way was to quickly offer to supervise another part of the service) and to hide my crutches behind the lectern so they didn’t interrupt sight lines (though the precise angle for hiding them also posed a trip hazard for anyone stepping over them to reach the podium). Meanwhile I lived in weekly fear of the dreaded processional, which required me to navigate down five steps in a long robe in front of 100-plus people while trying to look serene and collected.
For the first five years of my ministry at First Pres I was the plucky associate pastor, the fawned-over daughter of the church who shepherded mission projects and visited seniors in the hospital. And then the other associate left to get a solo gig, the head pastor landed his dream job in NYC, the interim didn’t work out, and quite unintentionally I found myself as the temporary head of staff in a 1,000-plus-member congregation. Yet this church was being told by competent professionals that without an endowment, we were a few dozen funerals away from shutting our doors. We would have to do something different, to move differently in our neighborhood, to survive. Adapt or perish.
A decade ago, disability theorist Rosemary Garland-Thomson coined the idea of “misfit.” She writes:
When we fit harmoniously and properly into the world, we forget the truth of contingency because the world sustains us. When we experience misfitting and recognize the disjuncture for its political potential, we expose the relational component and the fragility of fitting.[1]
As the institutional church, particularly the mainline church, finds that it no longer clicks smoothly into the culture where it had been operating for decades, we come face to face with our own vulnerability, what Garland-Thomson calls “the fragility of fitting.” We have assumed for centuries that the church’s worth was self-evident, and we have depended on our pews filling themselves with the loyal, biological offspring of our members, their pledges sustaining our programs and mission efforts. Our vulnerability to the changing world leaves many, myself included, concerned about the future. Those of us who came through the academy have the sinking suspicion that we were educated for the pulpits of yesterday rather than the suburban mission fields of tomorrow. We preach a broken Savior with the tools employed by institutions that have thrived, up until now, by reflecting and projecting power.
And yet the power we have held is not sufficient to the moment. We are confronting a post-Christian age where the smooth exterior of the church does not speak to the gritty realities of our members’ and neighbors’ lives in the same way it may have a generation ago.
A Community of Wounded People
As we face our own vulnerability, we require leadership lessons from those who have lived long and well with the messy realities of interdependence. As Tod Bolsinger argues, tomorrow’s church requires guidance from those for whom the margins are home.[2] No longer are we the city on a hill where the curious go for answers and the needy for healing, but a community of wounded people worshipping a wounded Savior whose gospel is most fully grasped by giving up that which we cling to the tightest. The church now needs, more than ever, the same people who because of our slower minds and twisted bodies were long shut out of the pews and pulpits. We need disabled people to help us all (disabled and nondisabled alike) learn how to adapt and navigate, to move more slowly and intentionally, and put to work the variety of gifts that make up the kingdom of Christ. We need misfit leaders for our misfit gospel.
My church’s story is far from over. We are winding our way through congregational visioning for the next chapter of our lives together, hiring a consultant, navigating a pastoral search team. I see so many sparks of life in this community I love. We share a blossoming partnership with a Spanish-speaking congregation around the corner. We switched up our VBS traditions so that our youth could work for the staff at a neighboring historically Black community center. Lay leaders are exploring how to turn church property into transitional housing and alternative income sources to support ministry. And Sunday after Sunday, I see more disabled people filling the sanctuary, sometimes forgoing the rigid wooden pews for a beanbag chair and blanket.
I do not know what the next year holds, or next month. But I am no longer tucking my crutches away. I hope that, like the rest of worship, those few inches of visible metal and plastic help us to perceive life and faith more clearly.
The Rev. Caroline Cupp ’08 M.Div. is Executive Pastor at First Presbyterian Church in West Chester, PA. A bioethicist and chaplain, she is the co-author of the upcoming picture book How We Play (Dial, Spring 2023), which features the stories of parents and children with disabilities. Caroline resides outside of Philadelphia with her husband and four-year-old son.
Suggested Reading:
• Including People with Disabilities in Faith Communities: A Guide for Service Providers, Families, and Congregations by Erik Carter (Brookes, 2007)
• The Disabled God: Toward a Liberatory Theology of Disability by Nancy Eiseland (Abingdon, 1994)
• Disability and the Way of Jesus: Holistic Healing in the Gospels and the Church by Bethany McKinney Fox (IVP Academic, 2019)
• Becoming Friends of Time: Disability, Timefullness, and Gentle Discipleship by John Swinton (Baylor, 2018)
• Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Taussig (HarperOne, 2020)
[1] Rosemarie Garland-Thomson, “Misfits: A Feminist Materialist Disability Concept,” Hypatia, vol. 26, no. 3, 2011, p. 597.
[2] Grace Ruiter and Tod Bolsinger, “Tod Bolsinger on Power, Privilege, and Adaptive Leadership in 2020.” Faithward.Org, Oct. 7, 2020.
