Over time, we had become accustomed to the quiet, methodical hissing sound of Ben Zell’s ventilator in the sanctuary on Sunday mornings. Diagnosed with an inoperable brain tumor at age four, Ben’s journey had been a corporate one for many years. The body of Christ at Reformed Presbyterian Church (RPC) of Ephrata, Pennsylvania, walked side-by-side with Ben’s family through years of treatment and trauma. During what had been anticipated as a “routine” brain surgery at age 11, Ben suffered a stroke, resulting in his dependency on a ventilator for his every breath, in addition to significant paralysis. Now the silence was deafening. Upon his death at age 13, Ben left a legacy of faith and a congregation changed forever by what we had seen and experienced as a covenant family.
While Ben’s experiences were perhaps the most dramatic among us, he was not alone as an individual with disabilities in our midst. Over the years, God has captured our church’s attention on disability through numerous covenant children and adult members who have special needs. They have been a precious gift. How have we responded to this gift? What have our relationships with these individuals and their families taught us? While we are still learning, we are beginning to understand (1) how to think biblically about disability, (2) how to engage entire families in mercy, (3) how to relate respectfully, and (4) how to value every member’s contribution.
A biblical view of disability
Ask most Christians to describe a biblical view of disability, and they’ll likely have a hard time coming up with one. The common view of disability has long been that it is an abnormal part of life in a normal world. We tend to assume that the world in which we live is the baseline and, therefore normal. Differences from the norm are then regarded as something other—something abnormal. It does not take much imagination to understand why people with disabilities resent being seen this way. In reaction to this historical view, some disability-rights advocates now reframe the debate, couching disability as a difference no different than hair color. Essentially, they promote disability as a “normal part of life in a normal world.”
But these advocates have captured a partial truth in an inaccurate context. Disability is indeed a normal part of life as we know it. While unpredictable, it occurs with a degree of regularity. It is to be expected. But the key to understanding this is the context, and the context is in the following four missing words: in an abnormal world. The biblical view of disability is that disability is a normal part of life in an abnormal world. When we see it through this lens, we can begin to make sense of it—and ourselves. In his book The God Who is There, Francis Schaeffer put it this way:
“It is not that philosophy and Christianity deal with completely different questions, but . . . differ in their answers—including the important point as to whether man and history are now normal or abnormal.”
According to the biblical account in Genesis, tragedy struck with the Fall of mankind—with a devastating impact on every aspect of creation. As Paul states in Romans 8:20, “the creation was subjected to frustration, not by its own choice.” Our world became an abnormal world. For the first time in human experience, brokenness and difficulty were introduced. The effects continue to carry over today into our work, our world, our bodies, and our relationships with self, others, and God.
What does this imply then about disability? Disability is simply a more noticeable form of the brokenness that is common to human experience—a normal part of life in an abnormal world. It is just a difference of degree along a spectrum that contains difficulty all along its length. Due to God’s Common Grace, no one exists in the extreme of complete brokenness. But due to the Fall, no one enjoys the extreme of complete blessing. We all experience some mixture of the two in every aspect of our humanity—including the spiritual, the physical, the mental, the emotional, the psychological, and the social.
Many people with disabilities can testify that relative brokenness in one aspect of their being has promoted tremendous blessing in another aspect. Jon McFarland is an adult in our congregation who was born with spina bifida. Due to the nature of his condition, he uses a wheelchair and requires assistance for many daily living activities. In response to these challenges, Jon has nurtured a positive attitude, a warm sense of humor, a deep faith in Christ and a notable quality of patience that outshines his “able-bodied” peers in many ways. As Jon testified at a Sanctity of Human Life Service at RPC, “I just focus on living one day at a time, taking each day for what it brings. And God will just lead me through. Whatever I face, I’ll face with Him.” For Jon, physical disability has been a catalyst for tremendous spiritual growth. He has taken something that is a normal part of life in an abnormal world, and redeemed it for God’s glory.
Jon only began to attend RPC after we completed a building program that required us to make the entire facility handicap accessible. The additional expenses for an elevator, a mechanical lift, and a 21-foot ramp to the pulpit area were met with occasional grumbling during renovations. In retrospect, Senior Pastor Tom Nicholas recalls, “We had to repent when, on Sanctity of Human Life Sunday, Jon McFarland was wheeled up that ramp and led us in our call to worship from Isaiah 61. Without knowing it, we had set a captive free. We no longer see Americans with Disabilities Act (ADA) codes as expenses to avoid, but wonderful avenues for grace.”
Engaging entire families in mercy
Foundational to the development of a Special Needs Ministry in our church has been consistently gospel-centered preaching on the importance of mercy. St. Gregory of Nyssa once defined mercy as “a voluntary sorrow which enjoins itself to the suffering of another.” Hand in hand with a biblical view of disability, mercy permeates our ministry activities. While disability is a normal part of life in an abnormal world, it does not mean that life is easy for those who are touched by it. Mercy is the vehicle by which we enter into the struggles of others, as an expression of the gospel. As Wendy Williams, an RPC member diagnosed with Sydenham’s chorea states, “RPC Special Needs Ministry has a biblical compassion that weeps with those who weep and dances with those who dance. RPC is a hospital for sinners. Sometimes you’re the patient. Sometimes you’re a doctor. Sometimes you’re a little of both.”
One way that we respond mercifully to people affected by disability is to develop Covenant Care Groups for families. At RPC, a Covenant Care Group is defined as “a covenantal relationship between a family in exceptionally difficult circumstances and a small group of church members who commit to assisting the family in the meeting of legitimate needs.” It mobilizes the congregation to provide emotional, physical, and spiritual support. Over the years, we have started Covenant Care Groups for seven different families.
As recipients of the first Covenant Care Group at RPC, Patty and Roger Coiner are now leaders of this ministry. In 1988, their first son Douglas was born with multiple, significant medical issues. When Douglas was just 22 months old—still on oxygen and tube-fed—their second son was diagnosed in utero with even more complex medical challenges.
Patty tells their story: “Samuel Roger Coiner was born November 24, 1990. Everyone from our Covenant Care Group was at the hospital with us. My husband and I were in considerable emotional pain and grief when our son lay dying in our arms. I can still feel his head lying softly snuggled against my shoulder as Roger and I lay in the two hospital beds that our Covenant Care Group had lovingly pulled together so we could share Samuel’s last breaths. He died 12 hours later. There was no miracle in Samuel’s physical body that occurred that night, but a miracle did take place in the form of God’s grace, faithfulness, and almighty wisdom enveloping us.” Covenant Care Groups become the hands of Jesus, touching the lives of those in our congregation who find themselves in extreme circumstances.
While we employ several organized ministries besides Covenant Care Groups, our focus is not on programs but on relationships. Wherever programs are put into place, they are intentionally designed as vehicles to facilitate relationships. Through our Special Needs Ministry, we are fostering a deeper commitment to “respect-based relationships.” Our church mission statement says, “Reformed Presbyterian Church exists to be a stream of God’s refreshing grace for people from all walks of life.” We understand “all walks of life” to include people with differing abilities. Genuinely inclusive relationships are inherently respectful relationships. The Scriptures show us that there are two “pillars of respect” that undergird our relationships—the image of God and grace.
Central to the concept of respect for every human being is the reality that we are created in the image of God. His glory, imprinted into the essence of man, is at the core of human respect. Jerram Barrs of Covenant Theological Seminary, says: “Scripture calls us to recognize that everyone we’re ever going to meet is made in the image of God—and that means they’re glorious…. That’s to be our first response: to see the glory of a person . . . to first see their glory and their dignity as a person made in the image of God and to treasure all the things that are good and admirable and beautiful about the person as a person made in the image of God.”
It takes effort for us to concentrate on the most fundamental blessing of creation—that we are all created in the image of God—and to speechlessly gaze at His goodness, truth, and beauty in others. Yet lives are radically transformed when we choose to intentionally focus on the image of God within.
Five years ago, a member of our congregation was diagnosed with Pick’s disease at age 44. Tom Heisey had been vice president of the local bank, a caring member of the Diaconate, father of four children, and a devoted husband. Tom’s wife, Pam, describes Pick’s disease as “characterized by all those things we most dread: It’s incurable, untreatable, terminal, and causes dementia.” After Tom’s disease was first discovered, members of the congregation met with Tom, Pam, and representatives from the local Alzheimer’s Association chapter. Upon introducing Tom to the visitors, he responded, “Hi. I’m Tom. I’m still Tom.” Even as Pick’s was robbing him of the gentle, intelligent personality that we had all come to know and love, Tom instinctively knew that those characteristics that give him value and identity could never be taken away. Today, eight men from RPC faithfully rotate through a visitation schedule at the nursing home facility where Tom receives his care. Their goal is to “honor what’s left instead of what’s lost.” While Tom can no longer speak to them, their visits speak volumes to him each week.
Respectful relationships have to deal with both realities of life—the blessedness of creation and the brokenness of the curse. The blessedness of creation is found by discovering God’s image within other people. But we acknowledge that the brokenness of the curse bears heavily on our relationships too. Personalities can irritate, people bring sinful behaviors to their dealings, and the sheer volume of needs can be overwhelming.
How do we at RPC contend with those issues in each other? In the same way that God deals with us—with grace. When we encounter brokenness in others we try not to judge it, but we meet it— just as God meets us. In relating to a person with significant needs, we seek to be patient with them, because we realize that we also have great needs of our own, albeit different ones. At the times that our relationships are costly, we try to quickly remember that God creating a relationship to us was exceedingly costly to Him. And these recollections of His grace empower us to show grace to others.
In our congregation, the adults with mental disabilities are often the ones who patiently extend grace to the rest of us over and over again. It is noticeable, because they find it necessary to keep re-teaching us the same things. Debbie Wurth is one of those tolerant individuals. She stays “on message” with the same themes of love and friendship. Known for her gifts of encouragement through writing letters, members of the congregation are blessed to receive her gems in the mail. They almost always contain reflections such as “Love one another,” and “The world is beautiful when shared with a friend.” Debbie patiently reminds us how much people matter to God, and therefore how much we should matter to each other.
Keith Laudermilch, an adult member with Down syndrome, is a man with a mission—one that he executes with determination and grace. One evening the Session was meeting in a glassed-in room in our church narthex. Keith saw them through the windows and walked right into the middle of the meeting. Looking each elder in the eye, Keith asked them his favorite question: “Do you love Jesus?” After hearing their replies in the affirmative, Keith reminded them, “Jesus is coming again.” Then he left. Reflecting on that event, Senior Pastor Tom Nicholas remarked, “Now you can look at that as an interruption or you can look at that as prophecy. God sent him to the elders of our church just to give us a check. He comes in and says the most profound thing that could ever enter into a Session meeting: ‘Do you love Jesus? Is He the center of your life? Do you have the hope of His coming again?’” Our adults with developmental disabilities at RPC regularly remind us how to reflect the life of Jesus, full of grace and truth.
Expanding our comfort zones with regard to disability is an ongoing process for each of us at RPC. Associate Pastor Bill Graybill comments, “I think I always had compassion and respect for people with disabilities, but I didn’t know how to feel comfortable around people with disabilities— especially mental disabilities. Exposure and ministry opportunities have changed this for me. I have learned that we are all unique individuals and therefore uniquely different. But we are all more alike than different.”
One practical expression of respect-based relationships is that each individual is valued for the unique contributions they bring to the body of Christ. This is where we have found ourselves most challenged corporately, asking ourselves, “Do we tend to see an individual’s disabilities or do we tend to focus on their gifts—however uniquely those gifts might be packaged?” All people with disabilities have abilities. But Christians with disabilities are also fully endowed by God with spiritual gifts. “There are different kinds of gifts, but the same Spirit. There are different kinds of service, but the same Lord. There are different kinds of working, but the same God works all of them in all men. Now to each one the manifestation of the Spirit is given for the common good” (1 Corinthians 12:4-7).
Learning to think differently about giftedness is helping us to embrace the value of every member’s contribution for the common good. It is easy to identify giftedness when someone is a skilled Bible teacher. But we also need room in our thinking, and in our ministries, for someone who has a beautiful spirit of encouragement, or one who teaches us through the word pictures of their life.
Kandi Shultz, an adult with developmental disabilities, has the gift of service. Whether it is helping in the kitchen, stuffing envelopes in the office, or raising money for a worthwhile cause—Kandi gives, and gives, and gives again. Children’s ministry leader Sharon Fasnacht comments, “Every Wednesday Kandi finds a ride to AWANA and watches the kids in the nursery. If there are extra events, she wants to come and help. She has such a special heart for the kids in the nursery. She holds them, feeds them, rocks them, plays with them—just loves being a mother to them.” Kandi is gifted—incredibly gifted—with gifts of service. And we are learning to value the Spirit at work in her life, for the common good.
At RPC we are also discovering that sometimes the greatest teachers speak in a voice we will not recognize if we do not stop to listen. While attending Ben Zell’s funeral last year, I was overcome with sadness for his family and all that they had suffered over the course of a decade. After greeting his parents in the receiving line I escaped to another room where I dissolved into tears. When I emerged, Keith Laudermilch (our Session’s prophet) greeted me. He observed that I had been crying and he was very intentional about speaking to me. “Do you love Jesus?” he asked predictably. I was not in the mood for this conversation. “Ben loved Jesus,” Keith said reflectively. Nodding patronizingly, I mumbled something in response to him. “And Ben is with Jesus!” he exclaimed. “And he grew up!” Uh-huh. Not being willing to be dismissed so lightly, he became very animated—strutting around the narthex and motioning with his hands, “And he can walk!” Finally, getting directly in front of my face Keith cried, “And he can SEE Him!!” He got my attention. I started listening to what Keith was saying and looked at the joy on his face. Ben had had hope. Keith understood the same hope. And Keith, my teacher, knew that I needed to be reminded of it too.
First published in byFaith Magazine April 2005. © 2005 Stephanie O. Hubach. All rights reserved.
Steph Hubach is the author of Same Lake, Different Boat: Coming Alongside People Touched by Disability, Revised and Updated (P&R Publishers, 2020). To learn more about Steph or access additional resources, visit her website.