Introduction

I will never forget that day in the summer of 1982. Toting our three-month-old daughter to the doctor because she was sick, the last thing my wife, Mary, and I expected was that our lives would be changed forever and our souls indelibly marked with the wounds of pain and dreams that died. Our daughter Jessica would eventually be diagnosed with a unique “chromosomal anomaly”: at conception, or within the first few cell divisions, something occurred with her eighth chromosome and this, along with other physical anomalies (maybe related, maybe not), meant that she would go through this life disabled, seriously and profoundly, unable ever to talk, walk, or care for herself in a meaningful and self-determinative way.

Our daughter Jessica did not die, and though there have been times we thought she might, she is still here as I write this in 2011. But in all honesty, I will admit to you, it would have been so much easier in many ways if she had. That is not something you can say out loud in most churches, but it is the brutal truth. Perhaps you have suffered some severe degree of brokenness, whether physical or otherwise, or you care for someone who has. If so, you may know what I am talking about.

The death of a newborn child, while excruciatingly painful, is also graciously final. People move on. Granted, they are never the same, but still necessarily they move ahead. But the brokenness of lifelong disability leaves many people in a state of what some have called “chronic sorrow.” And too often, the Christian church in the West communicates to people that sorrow and brokenness are conditions we expect people to overcome and conquer. People should get past such places in their experiences. But the hard truth is some of us, by God’s difficult providence, find ourselves facing brokenness day in and day out with no prospect of a significant change in the situation. In fact, though you walk on with Christ, by faith, often with gritty devotion and hard work, not only does the situation not get better or go away, but too often it gets more and more difficult with every passing year.

Perhaps you live with a debilitating and deteriorating condition. Maybe you suffer from chronic sorrow related to deep and abiding emotional trauma. Some have the burden of caring for a spouse or child with paralysis. Many face the long battle with cancer that threatens death. Still others live in the aftermath of the death of a loved one. As I write this opening chapter, I have received another call from a good Christian man, hearing that his dear friend has suddenly been taken from this life by an auto accident. And in my little church, this is not the first or even second time we have been touched by such loss this year. The pain and sense of confusion can be palpable at times because so many people we know and love live so much of their lives in the midst of this pain.

If there is no prospect of improvement, if the dawn seems like it will never come, perhaps you feel like Job when he said in chapter 3:

Why is light given to a man whose way is hidden,

whom God has hedged in?

For my sighing comes instead of my bread,

and my groanings are poured out like water.

For the thing that I fear comes upon me,

and what I dread befalls me.

I am not at ease, nor am I quiet;

I have no rest, but trouble comes. (3:23–26)

How do we square this experience with the teaching of the rest of Scripture? And how should the church community respond to such circumstances? These were the questions I began to ask as a young idealistic graduate student in theology almost thirty years ago. These questions, and others related to it, still nag me when I am alone in the car or mowing the lawn. And our predictable responses in the church also nag me. Why do we in the evangelical church in the West demand that everyone be “normal” and look the same? Why do we as a culture try so hard (and succeed so well!) at hiding people with disabilities from our everyday view? Why do people with visible and invisible brokenness often feel as though they have to hide the problem in order to join God’s people for worship? And finally, and perhaps most importantly, what answers does the good news of the gospel give us for these questions, and how does the gospel give us hope in these situations?

As I asked these questions over the years, I began to realize by simple observation that people with disabilities are almost universally absent from the congregations of most American churches. In 1 Corinthians 12:14–27, the apostle Paul describes the church using the metaphor of the human body. He said that “God arranged the members in the body, each one of them, as he chose” (v. 18). Some parts he describes as weaker but indispensable and others as less honorable and less respectable but treated with special honor and greater respect (vv. 22–23). Certainly on one level Paul is describing people with disabilities, broken people, as part of Christ’s body, the new community. And his description of the Christian community should be understood as normative, as what we should see when we walk into church.

Statistics from many sources number Americans with disabilities at over forty million people. This is approximately one in every six citizens. Add to this number people whose “brokenness” is relational and emotional, and this category may include almost every other person in the pew. But even a casual survey of most American congregations shows that these weaker, indispensable, and especially honorable members are, for the most part, simply not there. Or, if they are present, too often they are either separate from others (and I realize that this may be necessary in some cases) or they hide their brokenness behind masks of false happiness and superficial normality.

Those with visible disabilities certainly are not represented proportionally to their numbers in the general population. Long ago now, in 1983 (long before the Americans with Disabilities Act), Joni Eareckson Tada wrote, “Ten percent of our population is severely disabled. (That’s a flat figure, including impairments of all sorts.) So theoretically, on any given Sunday, a pastor ought to look out over his people and see ten percent who are limited—the deaf, the blind, people in wheelchairs—whatever.”1 This has not changed since Joni wrote it twenty-five years ago. In fact, as technology improves, more and more people with disabilities are able to survive for longer periods, so perhaps even more should be present in church.

Let’s be clear: such people have not been purposely excluded from the church. And we know that most church members and leaders would certainly affirm that broken people and people with disabilities are welcome at their particular church. But those who live with disabilities (that is, those who are disabled and those who live with and care for someone who is disabled) will testify that, though American culture generally is becoming more aware of and responsive to the needs and abilities of this disabled segment of society (especially since the Americans with Disabilities Act in 1990), in many subtle ways people with disabilities sense a lack of welcome from the church. Nancy Eiesland agrees, writing:

The history of the church’s interaction with the disabled is at best an ambiguous one. Rather than being a structure for empowerment, the church has more often supported the societal structures and attitudes that have treated people with disabilities as objects of pity and paternalism. For many disabled persons the church has been a “city on a hill”—physically inaccessible and socially inhospitable.2

My own family lives with disability. We have been to churches where we have had to carry Jessica’s wheelchair over obstacles or up steps to get inside. We have experienced the quiet stares that betray an unspoken discomfort with our presence. Many years ago when she was young, we heard nursery workers and Sunday school teachers actually say, “You’re not going to leave her here with us, are you?” And, of course, well-intentioned but theologically obtuse believers have sincerely asked us if we had confessed the sin in our lives that must surely be responsible for her affliction.

Too often people in the church, while accepting and loving all people, lack the initiative or the insight to provide simple measures that would make the church community more complete, satisfying, and welcoming for those who live with brokenness. People don’t know the needs because they don’t ask or take the initiative to find out. Our situation is nearly paradigmatic for myriad other families with whom we have spoken—families whose disabilities span a wide spectrum­ from the obvious wheelchair people to those with much more subtle but just as demanding marginal issues of brokenness.

The problem is that Christian people generally have an inadequate understanding of God’s role in disabilities. This lack of understanding leads to closed doors for people with disabilities even after the handicapped spaces are painted in the parking lot, dipped curbs are cut, and ramps are built to the front entrance of the church. But the more vital problem is that the Christian community generally tends to keep people with disabilities marginalized in the church. Stanley Hauerwas (with Bonnie Raine) has written:

While ethical imperatives of the Gospel seem clear and have never been forgotten by our churches, the direction which they might offer us as community members has not surfaced as a compelling rationale for caring for our handicapped...