On Truth: The Four Missing Words
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By: Stephanie Hubach|Published: July 22, 2009 5:43 PM
It was truly the quintessential spring day, balmy and seventy-two degrees, in Timonium, Maryland, on April 30, 1983.
A gentle rain shower had passed through in the morning and now warm sunshine bathed the sanctuary of Timonium Presbyterian Church. Resonating from the voice of the tenor soloist came this beautiful prayer:
O Lord Most Holy,
Father, Father, guide and defend us.
Then we pledged our vows—“I, Stephanie Darrah, take thee, Frederick Robert, . . . in joy and in sorrow . . . in plenty and in want . . . in sickness and in health”—never imagining how deeply those vows would be tested, nor how fully our wedding prayer would be answered.
Surprised by Disability
Timothy Robert Hubach was born on January 5, 1992. In retrospect, I still can’t believe that I didn’t anticipate the possibility. Unlike the birth of our first son just two years earlier, this delivery was rapid and intense. As I gazed at Timmy immediately after his speedy arrival, I was stunned by his appearance. Everything about him seemed different from our elder son, Freddy—really different. His stocky, round, and doughboy-like figure was a marked departure from the defined features of his older brother. But then again, we have had some rather rotund relatives on both sides of the family, I reasoned to myself. When I first held him and noticed his slanted little eyes, my own eyes darted around the delivery room to see if anyone else saw what I saw. But noticing the hospital staff going about their post-delivery tasks as usual, I dismissed my concerns as irrational. Quite uncharacteristically, I never even voiced my thoughts to my husband Fred.
I suppose my next clue might have been the remark made by a nurse early that afternoon. Timmy was sleeping soundly in the bassinet next to my bed. Having experienced an all-night labor and knowing that I was going home the next day to our extremely energetic firstborn, I was resting for the few precious hours I had left. The nurse entered my room and in a patronizing voice stated, “It’s OK to hold them, you know.” I felt irritated and annoyed by her mysterious comment, but chose to dismiss it. Soon thereafter, a doctor from our family practice group arrived on the scene. Without indicating anything specific, he came in and spoke to me in a very serious tone. His words assured me that there was probably nothing to be concerned about, but his face told the truth. He had requested the town pediatrician to come in and evaluate Timmy.
At this point it seemed as if everyone was talking at me, but no one was actually communicating with me. A theme of inexplicable sadness and solemnity hovered over the proceedings of the afternoon. Alone at the hospital while Fred was at home caring for Freddy, I felt slightly confused, and a tad lonely—all of which I attributed to the fact that I was quite fatigued.
That evening, all the events of the day finally came into focus even as the room around me began to swirl out of focus. The pediatrician entered my room and, after brief introductions, announced, “We believe that Timothy has a chromosomal abnormality.” I remember feeling dizzy and disoriented, as if the physician’s words were somehow being spoken through a funnel in another place. As he began to talk to me about Down syndrome, the hot tears streamed down my face. How could this be? I am only thirty-one years old. Somehow I stumbled through a series of questions and answers with him. Then he turned and left. Sobbing alone in the darkness, I entertained the bizarre thought, I wonder if I should tell Fred. Maybe I’ll call him tomorrow. Mind, body, and soul—I was already in a state of shock. Eight simple words had been spoken by the pediatrician, yet I knew instinctively that our lives would never be the same.
Why didn’t my husband and I anticipate the possibility? Very close friends of ours had recently become the parents of not one, but two sons with significant disabilities. What made us assume that we were exempt from a similar occurrence? We aren’t the only ones who have been surprised by disability. In fact, surprise appears to be a nearly universal response to disability. Why is that?
Many years ago, there was a television show called To Tell the Truth. On the show three contestants were presented to a panel of questioners. Each of the contestants claimed to be telling the truth about his or her identity. The job of the panel was to discern who indeed was being honest. There is a game of To Tell the Truth going on with regard to disability today. In this case, there are three different views as to what is true about the nature of disability and about the nature of our world at large. Let’s explore these three views and determine which is consistent with reality.
The Historical View: Disability Is an Abnormal Part of Life in a Normal World
Throughout the ages, people with disabilities have typically been, and continue to be, seen as aberrations. They are viewed as an abnormal part of life in a normal world. This is why we are often surprised by disability: it is viewed as outside the mainstream of the expected. You’ve heard the questions; if we’re honest, we can admit that we’ve all asked these questions (or at least ones similar to these):
“Pssssst! Mommy—what’s wrong with her?”
“What’s his problem?”
“What is that child’s birth defect?”
What is the underlying assumption in these questions? It is this: the routine of the world in which we live is the baseline—and, therefore, that which is “normal.” Differences from the norm are then regarded as something other—something abnormal. This does not have a positive connotation. It does not take much imagination to understand why people with disabilities resent being seen this way. No one wants to be defined exclusively by his or her limitations. No one wants to be considered unacceptable to the rest of the human community. Worse than that, the “abnormal part of a normal world” perspective has been the basis and even the justification for countless abuses against people with disabilities. Consider the words of a well-known disability advocate:
Throughout history, people with physical and mental disabilities have been abandoned at birth, banished from society, used as court jesters, drowned and burned during The Inquisition, gassed in Nazi Germany, and still continue to be segregated, institutionalized, tortured in the name of behaviour management, abused, raped, euthanized, and murdered.
Tragically, this is an accurate accounting. Clearly, how people are viewed affects how they are treated. The historical perspective of disability has focused almost exclusively on the distinctive, negative characteristics of the diagnosis, and very little on the reality of the shared, valuable personhood of the individual. A reaction to this imbalance has given rise to the next view: the postmodern view of disability.
The Postmodern View: Disability Is a Normal Part of Life in a Normal World
For some time now, disability advocates have been thoroughly annoyed by the “abnormal” label slapped on those with disabling conditions. As we’ve just seen, there is good reason for this sense of frustration. Determined to improve the lives of people affected by disability, activists are attempting to reframe the debate. In predictable postmodern fashion, this is being accomplished by resorting to changing the language of disability. This alteration cannot be overemphasized. If you listen carefully, you can hear the dramatically shifting terminology. Ponder these statements from the writings of a nationally known speaker at a recent Down syndrome conference:
Having a disability is a difference like any other human characteristic. It is not a deficiency. It is by no means a tragedy and does not deserve pity or benevolence or charity. Now is the time to recognize and celebrate disability rather than ignore, devalue or use it as a justification for lower expectations. (Carol Tashdie and Zach Rosetti, “Facilitating Friendship: Barriers and Strategies”)
Can you feel the huge shift here? The new language confuses everything and solves nothing. Does this person really mean what she said? Is disability to be regarded with no greater acknowledgment than hair color? Of course no one wants to be an object of pity, but are people affected by disability begging to be released from the compassion of those around them? If disability is something to be celebrated, then why don’t more people attempt to acquire traumatic brain injuries? In response to an appropriate desire to celebrate the individual, the postmodern view instead ends up celebrating the diagnosis.
Imagine the ramifications of this postmodern view. Suppose you had walked into my hospital room just after the town pediatrician had left. What would have occurred if you had entered, stood by my bed, and greeted me with, “Hey! Isn’t this great? So glad to hear of your son’s diagnosis. It couldn’t have happened to a nicer family! I just wish it was me!” How long do you think you would have been allowed to stay before the nurse called for the hospital security guard? Would you have walked away bewildered, thinking, What did I say that upset her? Or would you inherently have known that the things you said were cruel? This example may seem absurd, but that is because the “normal part of a normal world” perspective is absurd. Those who promote this new philosophy fail to, or refuse to, recognize that the deeper issue lies in our worldview—our view of the world itself. Such a perspective directly impacts how we see ourselves and others. The postmodern approach does nothing to remedy that.
The Biblical View: Disability Is a Normal Part of Life in an Abnormal World
Those with a postmodern perspective are capturing partial truths in an inaccurate context. Disability is indeed a normal part of life as we know it. It is unpredictable but occurs with a degree of regularity. You will find people with an endless variety of disabilities in cultures of every kind across the world. This has occurred across the centuries. But does that make disability itself something celebratory? The key to understanding this is the context, and the context is the following four missing words: in an abnormal world. When we recognize that disability is a normal part of life in an abnormal world, 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.”
When we begin with the biblical account of creation, we realize that everything God created was good, and mankind was deemed very good:
So God created man in his own image,
God blessed them and said to them, “Be fruitful and increase in number; fill the earth and subdue it. Rule over the fish of the sea and the birds of the air and over every living creature that moves on the ground.” (Gen. 1:27–28)
Human beings were God’s crowning act of creation. While fashioned as creatures, people were designed to intrinsically embody his likeness. This means that mankind has a myriad of finite potentialities that reflect God’s infinite reality. These include the ability to love, to create, to rule, to relate, to design, to reason, and so much more. People were designed to reflect the essence of God’s character expressed through God-imaging capacities. According to the Genesis account, we were fashioned to experience purposeful, blessed lives.
But then tragedy struck. In Adam and Eve’s desire to rule, not only over the rest of creation but over themselves, the fall of mankind occurred—adversely impacting 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. This marring of creation permeated not only the spiritual, but also the physical, the intellectual, the emotional, the psychological, and the social. The effects continue to carry over today into our work, our world, our bodies, and our relationships with self, others, and God. Reflecting on this, the apostle Paul again notes in Romans 8, “The whole creation has been groaning” (v. 22).
What does this mean in practical terms? Does this mean that everything in human experience is ruined by the fall? Absolutely not. But it does mean that everything in human experience is affected by the fall. On every level of every dimension of the human experience there is a mixture of both the blessedness of creation and the brokenness of the fall. By God’s common grace, we participate in the damaged but not obliterated blessings of being created in God’s image and being endowed with purpose. At the same time our experience is permeated throughout with the effects of brokenness. This is true for every person. Yet much of our energies in life are directed toward denying this reality.
For some people, the effects of brokenness are more noticeable or more dramatically experienced in one part of life over another. For example, for a person battling cancer, the impact of brokenness on the physical dimension of being human stands out in bold relief. However, all of us face the slow, incremental process of inching toward death on a daily basis. It has been said that “Health is just the slowest form of dying”—and so it is! At the same time, the person fighting cancer may be experiencing more spiritual wholeness than their counterpart who is relatively physically fit but perhaps increasingly corrupted from pursuing a blatantly immoral and self-centered lifestyle.
What does this imply, then, about disability? Disability is essentially a more noticeable form of the brokenness that is common to the 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. 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 intellectual, the emotional, the psychological, and the social.
Many people with disabilities can testify that a disability in one aspect of their being has produced tremendous blessing in another aspect. Jon is an adult in our local 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, “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.
In a comparable way, a person with Down syndrome may tend to learn more slowly or require things to be explained more concretely. However, that same attribute, which is defined by society as an intellectual disability, can have beautiful spiritual ramifications that put to shame those who may be more intellectually capable. Several years ago, our family received a letter from a relief organization that contained a graphic depiction of individuals living in dire poverty. The photograph conveyed the reality of the extreme deprivation in which families attempt to scratch out an existence surrounded by shacks and boiling pots of palm oil in a barren, mud-packed place. I was so moved by the photo that I felt compelled to share it with my children that evening while we were sitting around the dinner table. As I displayed the picture to our two sons, both of them were visibly moved. While I was describing the root causes of this type of poverty, Timmy was silent for a moment, and then his eyebrows furrowed. Quietly and deliberately he questioned, “Do we have money? Couldn’t we send them some?” Timmy’s need to see things concretely is a gift in the realm of the spiritual. Guess whose family mailed a donation that week?
Truth Sets the Stage for Success
We slipped into the back row of Reformed Presbyterian Church of Ephrata during the morning announcements, with newborn Timmy tucked into the infant seat resting beside us. In contrast to our wedding day, it was a different church, in a different decade, and under very different circumstances. As we sat down we heard the words of our close friend and youth pastor, “Timothy Robert Hubach was born last Sunday morning. Fred and Steph have asked me to let you know that he was born with Down syndrome.” At this point the audible gasps of our church family could be heard around the sanctuary, giving voice to the raw pain in our own hearts. “But Fred and Steph also want you to know that your condolences are not expected. Instead, they want you to celebrate with them the life of this child of the covenant.” Greeted after the service by the congratulatory hugs of our teary-eyed friends, we could not imagine a more wonderful way to introduce Timmy to his church family. Even as our hearts were racked with sorrow at the diagnosis and all of its implications to Timmy’s life and ours, we chose to focus on the precious value of his personhood. “Joy and sorrow . . . plenty and want . . . sickness and health.” This is the stuff of disability, which is simply the stuff of life. It’s time To Tell the Truth about disability: it is a normal part of life in an abnormal world. We are all recipients of the blessedness of creation and the brokenness of the fall. Upholding a biblical perspective of disability really matters, because when we see our world truthfully, we can view ourselves more correctly. When we view ourselves more correctly, we can also regard others more accurately. And when we regard others more accurately, we are more likely to respond to them appropriately.
As the South African proverb states: “Truth and the morning become light with time.” Well, it’s time.
Personal Application Questions
Stephanie O. Hubach is author of Same Lake, Different Boat.
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