Editor’s Note: A few months ago, the poet Thomas Lynch raised the question in our podcast: “How do we come to be the ones we are?” In response, the Reformed Journal will occasionally run personal reflection pieces that address that question.
Three things have been part of me for as long as I can remember—my disability, my connection to the church, and my allegiance to the Chicago Cubs—and all have influenced who I am.
I was born with a rare bone condition called spondyloepiphyseal dysplasia. Middle-aged orthopedic doctors have told me that they learned about this condition in medical school but I’m the first patient with it they’ve ever met. Other doctors furrow their brow, parse the name for several seconds, begin to nod their heads yes, and say, “Okay, yeah.”
When I was 18 and a freshman at Northern Illinois University, my parents scheduled an appointment for me at the Mayo Clinic. My younger brother Kent, who has the same bone condition, had recently seen doctors there because his hip had become fused. A geneticist at Mayo diagnosed Kent’s bone condition and wanted to see me. After years and years of head-scratching, twice-annual visits to places like the University of Illinois Research Hospital in Chicago—where inevitably Kent and I were surrounded by 10-20 puzzled orthopedic doctors and residents while we lay on our respective examination tables—a correct diagnosis was finally made by the Mayo Clinic. The geneticist estimated there were probably 200 cases in the world.
After I completed my freshman year of college, Kent and I each underwent hip-replacement surgery (on the same day by the same doctor). Eight days later, that same doctor replaced my other hip. I had been walking with crutches since eighth grade, but with new hips, by the middle of my sophomore year in college, I transitioned to a single cane, which remains the case today. (Both artificial hips have been redone twice since the initial surgeries in 1975, and in the last decade both of my knees have been replaced.)
Spondyloepiphyseal dysplasia is a degenerative condition that limits the movement in every joint in my body and, as part of the dwarfism family, affects the growth of my bones. It has several other symptoms, some of which I’m still discovering with age, but I’m grateful to be living in the 21st century, in a developed country, with access to world-class medical technology.
It’s impossible to measure or underestimate the impact of my disability on who I am and how it’s factored into God’s work in my life. My understanding of these layers of my identity continues to evolve—this probably is true for most people with disabilities. It often feels like a gift that my disability is immediately visible; for the 80 percent of disabled people whose impairments or conditions are invisible, the issues can be even more complex. Since disabilities carry stigma, the decision to self-disclose a hidden disability is fraught; yet, to hide or conceal one’s disability comes with a host of complexities as well.
My strong preference has always been to remain as independent as possible. However, by fourth or fifth grade, I usually had a pinch-runner for me when playing baseball or softball. My direct participation in sports mostly had stopped by seventh grade. I became an equipment manager in basketball, mainly to stay close to the action and because it provided access to watching practices and games.
Living with a disability has messed with my self-image. For instance, I went from being an outgoing kid whose grade-school report card frequently had three check marks squeezed into the box for “talks without permission,” to being rather shy and reserved in high school. I was increasingly aware of the limitations of my disability and how I appeared. By that time I was also thinking about what sort of work I could go into after graduation, given my limited mobility.
After getting my driver’s license, I began looking for a part-time job. With my good grades in English and my love of sports, my dad encouraged me to apply for a part-time sports reporter opening at the local daily newspaper in Joliet. My low self-esteem made me think there wasn’t much to support my application—given my disability, my lack of experience, and my age. To my great surprise, the sports editor of the paper invited me to interview. On crutches, I made my way up two flights of stairs to the newsroom of the Joliet Herald-News and talked with John Harmon for 30 minutes. I completed a writing assignment and then thanked him for considering me. I was shocked when he called a few days later to offer me the job.
That opportunity in 1973 opened a world to me that I never dreamed possible, and it happened because of my dad’s encouragement and a sports editor’s willingness to take a chance on a shy kid with a disability. It shaped my goals and pursuits for the next 10 years. I majored in journalism in college while working as a part-time sportswriter for two daily newspapers. After graduation I became the sports editor of a small twice-weekly newspaper outside of Joliet, and then I took a position as an associate editor at Pro Football Weekly, a national publication based in Chicago. My sights were set on becoming a sportswriter for one of the Chicago daily newspapers—maybe as the beat writer covering the Cubs.
However, as I became more deeply invested in my church and assumed more responsibility, I began to sense God calling me to a career in ministry. One morning during my devotions and prayer time, I had a vision: Jesus calling me out of a circle of friends to go with him somewhere. I did not share that experience with anyone, partly because I’d never experienced something like that and wasn’t sure what to do with it, but also because I did not want people to support my sense of call to ministry simply because I’d had what I subjectively interpreted as a vision. It meant a lot that my pastors and others at First Reformed Church in South Holland enthusiastically supported my sense of call. At age 27, I quit my sports writing pursuits to enroll at Western Theological Seminary. I had a great experience in my three years at Western, both in the classroom and doing ministry in local churches, plus a fourth year doing a yearlong internship at First Reformed Church in Oostburg, WI, a little Dutch town 45 miles north of Milwaukee. After graduating from Western in 1987, I was eager to pastor a church.
But with all my credentials, glowing recommendations, and years of work experience outside and within the church, finding full-time employment in the church turned out to be a difficult and demoralizing pursuit. Ten different churches requested in-person interviews, which eventually resulted in ten churches sending letters saying “Thanks, but no thanks.” In my resume and cover letter, I had not volunteered that I had a disability, but it was obvious when they met me in person. No church search committee would say my disability was the barrier, but I was sure no one could see past my disability.
One summer afternoon during this in-between period, I was at Western and bumped into one of my professors, M. Eugene Osterhaven, a legendary systematic theologian. He asked me how things were going, so I poured out my heart, telling him how frustrated and discouraged I was.
When I finished, all I remember hearing from him was, “Hmmph!” And then, throwing up his arms, he added, “It’s all in God’s providence.”
I thought to myself, “Yeah, right!” The exchange left me even more frustrated and discouraged.
Six months later, Central Park Reformed Church in Holland extended a call for me to become its associate pastor. This happened to be the same church where Osterhaven was a member. Over the next six and a half years, between morning and evening services, I preached nearly every week to a congregation that included Eugene Osterhaven.
In 2002, several years after leaving Central Park to begin a 15-year run as managing editor of the Church Herald, I was invited by an RCA church in Grand Rapids to teach an adult education class on a topic related to disability. I had interviewed with this church in 1987 for an associate pastor position that was nearly identical to the one at Central Park.
During Q&A at the end of the class, an attorney I’ll call Ed, who had been part of the search committee that interviewed me 15 years earlier, volunteered before 30-40 adults that my disability had been a significant factor in not pursuing me. I was perturbed, but mostly I was relieved that someone actually admitted this. I was also stunned that a lawyer acknowledged a church search committee had discriminated against me because of my disability.
Fast-forward to late December 2020. Our family Christmas letter mentioned that in 2020 my wife and I each had received awards for the work we do. A week later I received a handwritten letter from David Osterhaven, the oldest son of Eugene Osterhaven, who had died in 2004.
“It is so heartwarming for me personally, Terry, to reflect back on our earliest contacts and what a cheerleader of yours M. Eugene Osterhaven was then and continued to be his whole life. Specifically, he was bound and determined that Terry DeYoung was the exact correct choice for the Central Park position, and he would be the very strong voice in my ear throughout [search committee] proceedings. He was adamant about this. He loved your theological mind, your wit, and saw that cane as a very real asset visually in approaching and communicating with both youth and adults.”
I was stunned. Eugene Osterhaven, who insisted, “It’s all in God’s providence,” was my biggest advocate. And rather than a liability, he considered my disability to be an asset, something I never heard him say. For his many achievements, Osterhaven was part of a generation of men who often didn’t say what they really felt or meant. While grateful for his support, I wish he would have said something to me about how he viewed my disability.
Nearly a year after David Osterhaven’s eye-opening letter, I reached out to Ed, the attorney from that church in Grand Rapids; I wanted to talk about his admission in the adult education class. Over lunch, he described the culture of that church in 1987. He referenced physically challenging programs the search committee thought I’d find difficult: church softball teams, camping trips, canoe trips, a golf league. I told Ed that, in fact, we did the very same activities at Central Park Church—and I took part in nearly all of them! I explained how such ableist perspectives play out all the time, to the detriment of people with disabilities and prospective employers. Employers don’t trust us to navigate systems and structures not designed with disabled people in mind. In fact, people with disabilities are constantly adapting as a means of survival in the face of ableist systems, environments, and attitudes that perpetuate discriminatory practices like this every day.
In a subsequent email, Ed thanked me for our candid conversation and wrote: “In hindsight, your disability has been an asset in the career you have followed—which does not diminish the daily frustration you are faced with.”
Coming to terms with my disability has been a lifelong challenge—not only in the discrimination I face, but in how I feel about myself and what it means as a follower of Jesus who is seeking to live out my call in the church and beyond. This isn’t unique to disabled people; it’s shared by others who get marginalized, especially in the church—whether it’s connected to their gender, skin color, ethnicity, orientation, or age. Slowly the church is playing catch-up in these important issues of justice and equity. With all this personal experience living with a disability, I’m embarrassed to admit that I have been a late-comer to paying attention to the needs and challenges of others with disabilities.
I trace my start down this path to a woman named Marilyn, who was blind. Marilyn had a son with cerebral palsy and was a member of one of my teaching churches in seminary. Marilyn was also on the board of the local ARC—or, as it was known in 1990, the Association for Retarded Citizens. Marilyn and the executive director of the ARC invited me to lunch one summer day in 1990 because they wanted to add a clergyperson to the board, and Marilyn thought I fit the bill since I had been ordained recently and had a disability. Even though I knew nothing about the ARC, about life with an intellectual disability, and had no experience with advocacy, it seemed to me like the right thing to do—so I said yes.
Two years later, the ARC spun off a Center for Independent Living (CIL) as a separate organization. I was one of three people who moved from the ARC board to constitute the board of the new Lakeshore Center for Independent Living, a cross-disability nonprofit focused on advocacy and resources to support people in achieving independence. There are about 340 CILs throughout the United States, and all of them are governed and operated by a majority of people with disabilities.
The connection to my local CIL all these years—mostly as a board member—has been instrumental in my growing awareness of the needs of people with disabilities and how we’re marginalized. More than anything else, it prepared me for my work with RCA Disability Concerns that I started in 2009 after the Church Herald had been shut down. I feel deeply indebted to several grassroots RCA members with disabilities who stirred the pot in 2003 and challenged the RCA’s highest assembly to take bold action within this small, historic denomination. The RCA took the bait.
My work with RCA Disability Concerns has forced me to wrestle in deeper ways with ableism—the subtle, pervasive bias evident in attitudes, actions, or systems that consider a person with a disability as defective, broken, and “less than.” When I was hired in 2009 to launch this new RCA ministry, I resisted emphasizing the church’s many ableist practices because it seemed too difficult to start there. But as I’ve observed and repeatedly experienced ableist practices and systems over more than a decade, I’ve been convicted to name and challenge them.
Unfortunately, the Bible isn’t too helpful in this regard. Scripture primarily labels people by their disabilities and doesn’t provide their names. The lines between “curing” and “healing” are blurred. Sin and disability in the Bible are often conflated or named in such proximity as to imply cause and effect. Disability is presumed to result from sin and the fall, rather than being viewed as an aspect of diversity. References to mental health challenges are confused with demonic activity or a lack of faith. Without a critical or nuanced lens to interpret Scripture, the church tends to perpetuate and even sanctify ableist attitudes.
“In heaven, there won’t be any disabilities,” I’m often told, by people with and without disabilities. That may be true. However, a person beaten down and frustrated by a lifetime of ableist bias and systems may hear a statement like that as, “In heaven, we won’t have to put up with disabled people anymore.”
Addressing all of this is daunting work, but increasingly it’s where I’m feeling called—in my current role with the RCA but beyond that as well, in sectors outside church walls.
Thankfully, scholarship has emerged in recent decades that spark fresh insights into biblical texts and interpretation. It’s transforming conversations and people in the church. Personally, Amos Yong’s exploration of Jesus’ interaction with Zacchaeus (Luke 19:1-10) prompted me a decade ago to examine my own experience of being short in stature. Through Yong’s invitation to imagine this despised chief tax collector as a dwarf, the familiar account became far more than a popular Sunday school song. It led me to investigate dwarfism more deeply.
In his award-winning Far from the Tree: Parents, Children, and the Search for Identity, Andrew Solomon’s chapter on dwarfism describes a public callousness that exceeds what is shown to almost any other disabled group. “Dwarfs still appear in freak shows, in dwarf-tossing competitions, and in pornography, where a whole subgenre featuring dwarf sex exploits an objectifying voyeurism,” Solomon writes. “Woody Allen quips that ‘dwarf’ is one of the four funniest words in the English language. To be in your very essence perceived as comical is a significant burden.” Solomon says that when he described the categories of his ten-year project interviewing the families of kids with stigmatized conditions, listeners were hushed by the seriousness of the enterprise. But at the mention of dwarfs, his friends burst into laughter.
My disability is apparent to anyone who sees me. Somewhat less obvious, except to those who know others in my birth family, is the partial dwarfism that’s connected to my condition and makes me 12 inches shorter than my non-disabled brothers and father. At barely 5 feet tall, I might stand up to a foot taller than Zacchaeus, but neither of us would find it easy to climb a sycamore tree, reach into standard kitchen cupboards, or drive a typical automobile without attracting teasing gestures from others who wonder how we can see over the steering wheel and reach the gas pedal at the same time.
In what ways might thinking of Zacchaeus as a dwarf change our image of him as not only a despised person, but as an easy-to-mock public spectacle—his 4-foot frame waddling ahead of the crowd, straining to climb a sycamore tree, and then laboring to get down again after Jesus had singled him out?
To invite further wondering that could open up insightful perspectives:
• How have we observed people with disabilities being stereotyped and ridiculed because of their disability?
• How have we played along with such hurtful caricatures, and how have we resisted such hurtful caricatures?
• Why have traditional interpretations of the Zacchaeus story made relatively little of the possibility he was a dwarf?
• What implications might this have for how the church traditionally has read any biblical story that features disability?
• Is there more we can learn through a fresh perspective on familiar passages that include disabled people?
I regularly encourage people to read the Bible through a disability lens or ask people with disabilities how these stories come across to them.
Such approaches have caused me to reexamine my own complex experience of identity and disability. I am not defined by my disability, but it’s an essential aspect of who I am. God clearly has worked through my disability over 65 years to shape me, teach me, and give me access to significant, sometimes redemptive experiences—even when my disability has been a barrier. These experiences continue to forge who I am and draw me into opportunities that call for more courage than I wish.
Fortunately, with our culture’s gradual awareness of a growing disability rights movement, the exploding presence of disability activists on social media, and the emergence of biblical scholarship around a practical theology of disability, this is an exciting time to be engaged in work that leverages my own experience of living with a disability. Crucial, precious, unrepeatable moments like these are clearly leading me somewhere. My hope is that the same is true for the body of Christ.