The Bible, Disability, and the Church

A New Vision of the People of God

Amos Yong

• Publisher: Eerdmans
• Year: 2011
• ISBN:
  9781467434676
• Topic: Theology & Religion
• Subtopic: Christian Denominations

Inspiring and challenging study that rethinks the Bible's teaching on disability A theologian whose life experience includes growing up alongside a brother with Down syndrome, Amos Yong in this book rereads and reinterprets biblical texts about human disability, arguing that the way we read biblical texts, not the Bible itself, is what causes us to marginalize persons with disabilities. Revealing and examining the underlying stigma of disability that exists even in the church, Yong shows how the Bible offers good news to people of all abilities — and he challenges churches to become more inclusive communities of faith.

1 Introduction

Disability and the People of God — Whole or Fragmented?

This is a book about disability; it is also a book about the church, and what it means to be the church in light of the experience of disability. But I don’t claim to have the once-and-for-all final say or absolute truth about these matters; rather, I submit these ideas as arising out of my own experience growing up with a brother with Down syndrome.

Growing Up with a Brother with Down Syndrome

I was almost ten years old when my brother Mark was born. He spent the first three weeks of his life on a life-support system because he could neither breathe nor suckle on his own. I dimly recall peering at his frail, tiny body from the corridor outside the hospital room in which his incubator was kept. I only knew something was terribly wrong — partly because my mother cried a lot and even my father was worried (which wasn’t typical for him) — so I prayed earnestly that my brother would pull through.

Many others prayed as well. At the time, my parents were the senior pastors of a thriving congregation in Petaling Jaya (a suburb of Kuala Lumpur, the capital city of West Malaysia), and our home was continuously open to the parishioners. These few weeks were unusually busy as congregants came and went, crying with my mother and praying with us. Why wasn’t Mark responding to the treatment? These three weeks seemed like an eternity — at least that was how it must have felt to my parents.

But God did answer our prayers. Mark did come home eventually, although his life seemed to us to hang in the balance. Our daily routines revolved around his feeding sessions, each of which would take literally hours per sitting. I remember one of those sessions quite vividly. I saw my mother cuddling Mark’s practically lifeless body and literally crying out to God from the depths of her heart. I certainly felt her anguish, and what seemed like his pain, although I’m not sure I knew enough to be certain that Mark was suffering. Regardless of what Mark did or didn’t feel, I know we were struggling to reconcile our faith in the goodness of God with the fact that each of Mark’s breaths was a sign of the precariousness and fragility of his life.

In hindsight, I believe that part of the struggle my parents endured had to do with the culture of shame that shaped the lives of those in the Chinese diaspora: the birth of children with disabilities inevitably raised questions about what, if anything, the parents had done to have deserved anything less than a healthy child. This feeling of shame was exacerbated by the pentecostal convictions that my parents proclaimed about how faith and trust in God would inevitably bring about God’s blessings and abundant life. How would our message be received now, with the presence of Mark in our family? Yet God brought us through that first year, no doubt carried by the many prayers of family and friends, and by their love and concern not only for us but also for Mark. Our church members showed us the possibility of retaining trust in God even in the midst of challenging circumstances.

Eighteen months after Mark was born, our family moved to the United States in response to a pastoral call to minister to Chinese-speaking immigrants in northern California. We settled in the “valley” city of Stockton, about thirty miles south of the capital city of Sacramento and about a hundred miles almost directly east of San Francisco. It was here that Mark was formally diagnosed with Down syndrome.

Named after a physician — John Langdon Down (1826-1896) — the syndrome can be described phenotypically, cognitively, or genetically. Down himself focused on the phenotype (the observable physical characteristics): a flat forehead and nasal bridge, a smaller skull or head, slanted eyes (which led to the label of “Mongolism” for a period), malformed ears, hyperextended joints, a gap between the first and second toes, underdeveloped genitals in males, halting motor skills, slurred speech, and so on. Cognitively, the syndrome brought with it what today are called “learning disabilities” in some circles, “developmental delays” in others. In previous generations, such cognitive impairments were quantified by the Binet-Simon and the Intelligence Quotient (IQ) tests: those with the syndrome were not of normal or average intelligence, but were variously classified as “dull,” “feebleminded,” “morons,” “imbeciles,” “idiots,” and the like. Later research on the human genome confirmed that the Down phenotype followed a trisomic mutation (rather than dyadic pairing) of the twenty-first chromosome. Mark has all of these “normal” features for a person with trisomy 21.

So now we had a medical condition we could associate with Mark. But that didn’t help us deal with the various physical challenges which ongoing diagnoses revealed he confronted: the aftereffects of the high fever, leukemia, and pneumonia he suffered at birth; impaired vision and hearing; flat-footedness; and, most seriously, a double murmur in his heart. When Mark was six, a heart cauterization was performed, which has allowed him another almost thirty years (at the time of this writing) of a fairly healthy life. Along the way, however, Mark has resisted wearing his prescription eyeglasses and hearing aids. He seems to get along fine without them.

I spent my teenage years caring for Mark, especially on Sundays, when my parents had a full schedule of church services and activities. Mark couldn’t sit up until he was four or five, and didn’t begin to crawl — not to mention walk — until he was almost seven or eight. As a result, he required intensive care almost around the clock. I can recall staying home with Mark when my parents would leave for church with our middle brother. I would feed him, change his diapers, entertain him, watch the Sunday-morning version of cartoons with him, and so on. I have to confess that I didn’t mind getting a formal “get out of church free” card during those days, as our pentecostal services could sometimes last quite long if the Spirit was really present!

I went off to college just about the time that Mark was scooting around on his hands and knees (he began walking shortly after that). Since then (over twenty-five years ago), I haven’t seen Mark on a regular basis. Marriage and then vocational assignments in different states have taken me away from home. Yes, we visit my parents occasionally, and they also bring Mark to visit with us periodically. But my not being around Mark on a regular basis has resulted in my not being able to comprehend his speech or recognize his mannerisms as well as I could before.

Over the years, Mark has lived a relatively healthy life. He was placed in the state of California’s Crippled Children’s Services (now California Children Services) program almost immediately after we arrived in the United States, and thus he was afforded an education that would not have been available to him or us if we had remained in Malaysia. As he got older, he gradually was enrolled in school, and learned to read and write. While we remain unsure about how much he actually understands, we also know that Mark has faithfully read his Bible many times over — that is by far his favorite book! Along the way, Mark learned how to take the bus to and from school, made school friends (even with his teachers), and also brought home with him new social habits (just like any child who goes off to school!). At one point in his life, Mark was an avid bowler who looked forward to every other Thursday morning, when he and his schoolmates would be taken to the bowling alley. Outside of church, that was the pastime he anticipated the most.

It was in church, however, that Mark thrived. I never saw evidence of this when Mark was growing up. (Remember, we stayed home on Sunday mornings!) But over these last twenty-plus years, Mark has become one of the key members of the small but vibrant church my parents pastor. Everyone knows Mark, who is the unassigned greeter for every service. He’s also the unappointed worship leader, expressively lifting up his hands, slowly shifting his feet, singing with gusto (even if out of tune), sometimes praying out loud (even to the point of speaking in tongues) — in short, leading not from the platform but by example from the main floor. During prayer times, especially during the tarrying portions of the service at the altar, Mark will go up uninvited to gently lay lands on those who are kneeling and pray especially for those he knows, very specifically asking for God’s blessings, but also verbalizing Trinitarian prayers addressed to Father, Son (Jesus), and the Holy Spirit in different respects. Mark is especially sensitive to those who are sick, firmly believing in a healing God (so we know that he has received, understood, and embraced at least this dimension of my parents’ ministry), and always faithfully praying for deliverance from the devil as the cause of illness and claiming healing in the name of Jesus.

At home, Mark spends much of his time reading the Bible, hand-copying extensive scriptural passages, and listening to worship music. He still lives at home with Mom and Dad, and for one reason or another, has never been employed, with or without accommodations. He is relatively independent around the house, but Mom continues to assist him, especially in the area of bodily care. In many respects, Mark has been a model of Down syndrome: loving and gracious as a child; sensitive and tender in most interpersonal interactions; but also stubborn and ornery at times, especially as he has grown into adulthood and midlife.

For my parents, Mark has become nothing less than God’s unique gift to them and to the world. They have come a long way from the earliest days of wrestling deeply with the meaning of his life. My mother, especially, has come to see in Mark God’s miraculous provision. If you were to visit her home, she would share her testimony of life with Mark as one miracle after another: of the many physical healings in his body; of Mark’s being rescued from being shut away in the back of the house (still the plight of many people with Down syndrome in the global South) to being at the forefront of ministry in their church; of the many lives — nurses, doctors, teachers, counselors, and so on — that have been touched by the story of Mark and of our family. Yes, along the way, the many trials and even sufferings associated with raising a son with multiple intellectual and physical disabilities will be recounted by my mother; but so will the faithfulness of God amid these struggles. There can be no denying the unique person that Mark is, both in the challenges that he and we have had to overcome with God’s help, and in the opportunities his life has presented, for us and for the church as well.

Making Theological Sense of a World with Disability

This book is the second one that I’ve written on theology and disability. In the previous volume, Theology and Down Syndrome: Reimagining Disability in Late Modernity,¹ I reflected extensively on my growing up with Mark and on his life as it has unfolded. But as one trained in systematic theology, when it came time to write the book, I approached it as a systematician. Hence the book is basically an exploration at the interface of theology and disability that addresses questions from across the theological loci like the doctrines of creation and providence, of the person and work of Christ (Christology and atonement), of humanity (theological anthropology), of the church (ecclesiology), of salvation (soteriology), and of the last things (eschatology). My approach was primarily theological, although deeply informed by interdisciplinary methodologies, particularly from across the medical, social, and human sciences. In this book I attempted to show how our negative theological understandings of disability have developed over the centuries, and I suggested how to revise such views with the goal of creating a more hospitable and inclusive world for people with disabilities.

The goals of this second volume are largely that of the first. Mark’s life lies behind — and in a real sense within — these pages as well, and here I also continue to think through the meaning of disability, as I did in the first book. However, this book differs from and extends the first one in at least three ways. First, Theology and Down Syndrome was written primarily for the theological academy. I had come to see that theological discourse had marginalized disability and sought to register the importance of disability perspectives in the theological task. So while the theologically initiated should consult Theology and Down Syndrome, this present book is directed also toward interested laypeople. Theologians aren’t the only ones who need to be alerted to how traditional notions of disability unintentionally exclude people with disabilities from our communities and even our churches. I’m hoping that Bible study groups, adult religious education classes, and other interested people will find in this book an accessible discussion of the issues that are pertinent to all people, with and without disabilities. I hope this doesn’t mean that theologians will be uninterested in what follows. The fact is that all of us need to be more informed about how our beliefs about and practices regarding disability remain discriminatory in many ways, but need not be that way.

Second, Theology and Down Syndrome was more strictly a theological book, deploying theological modes of argumentation. By contrast, this book is more consistently concerned with biblical interpretation throughout. Now I realize that there is the problem that what we call disability today is anachronistic when applied to the Bible, since there is no straightforward biblical notion that captures what the term disability has come to mean presently. Hence we need to keep in mind that our exploration of “the Bible and disability” needs to proceed with caution, so that we don’t read too much of our present understanding into the biblical text. Yet if we think that the Bible remains applicable to our modern lives — and I, for one, believe it does — then we need to work hard to cross into the world of the Bible and then bring it back to our world in a responsible fashion.

That is what I’m trying to do in this book. Designed as it is for laypeople, I’m inviting my readers to revisit the scriptural material in order to rethink disability in our time. In what ways does the Bible provide a map for understanding the life of Mark and other people with disabilities? While there is certainly much in the Bible which has been read in ways that have contributed to the marginalization of people with disabilities, I also fundamentally believe that the Bible is redemptive for the experience of disability.² To see this, however, it will be helpful for us to approach the Bible afresh from the perspective of such experiences. Hence, biblical reinterpretation will form the heart of each of the main chapters in this book. Readers of Theology and Down Syndrome will find in this volume additional scriptural reflection only minimally hinted at or even absent from the former work.

Of course, I should admit that my training is in religious studies and theology rather than in biblical studies. In that strict sense, I’m transgressing on the field of those with more legitimate credentials than I have to handle the biblical materials. But I would justify my treading into this (for me) largely uncharted area as follows: it is the responsibility of theologians to base their proposals on the book of the church, the Bible, and this represents my efforts to do so with respect to a topic that, surprisingly, has not yet been examined — at least not in a way that takes the whole Bible into account while making a theological argument.³ Along the way, of course, I will be drawing heavily on the insights of scholars working at the interface of disability studies and biblical studies to make my case.

Finally, while Theology and Down Syndrome was not devoid of the “So what?” question of Christian praxis, its primary task was that of doctrinal revision and theological and worldview reconstruction. In the present volume, however, my approach will consistently work toward proposing a new portrait for what it means to be the whole people of God that values and is inclusive of people with disabilities. What does it mean to “be” church, and how should we “do” church if we are able to get beyond the dichotomy that currently separates some of us who are more able-bodied from others of us who are less so? Can we imagine a church or Christian community in which people like my brother Mark are the norm rather than the exception? So, against a body of Christ divided between the able-bodied and the disabled, I would like to suggest a charismatic fellowship of the Spirit that blesses and receives blessings from people with and without disabilities equally. My hope is that the more the church is informed about how negative images, stereotypes, and paradigms have functioned to exclude and marginalize people with disabilities, the more we can do to change the way things are. So it may be appropriate to say that if Theology and Down Syndrome was designed to change the way we think about disability theologically, this book is intended to transform the way we live with disability practically and especially ecclesially.

In a very real sense, of course, both books are complementary in terms of the major objective of removing the stigma that has accompanied disabilities and people who have them. What this book provides is an honest discussion of the many texts that have been read as stigmatizing disabilities so that we can become more aware of how our biases and discriminatory attitudes have been historically justified, and how these prejudices remain, to this day, based both implicitly and explicitly on such misconstruals of the Bible. Secondarily, of course, my intention is to offer alternative readings of these texts and to bring to the fore and retrieve other neglected texts that can serve as resources for transforming how we understand disability. My hope is that the result will be the creation of a more just, hospitable, and inclusive world for all people, especially those with disabilities.

Disability and Our Contemporary Social Context

But before we proc...