Editor’s Note: It was reported yesterday that a jury “awarded nearly $3 million to a Portland-area couple whose daughter was born with Down syndrome even though a prenatal test found she didn’t have the chromosomal abnormality.” According to the Oregonian newspaper, the jury voted 12-0, taking less than six hours before reaching a verdict in the case of Ariel and Deborah Levy vs. Legacy Health System. According to the published reports, “The couple sued Legacy Health, claiming that Deborah Levy would have aborted her pregnancy had she known her daughter had the chromosomal abnormality.”
This article, first published in 2005, is more relevant and more urgent than it was seven years ago.
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.