Redefining Perfect: The Interplay Between Theology and Disability

Redefining Perfect

The Interplay Between Theology & Disability

Amy E. Jacober

foreword by Nick Palermo

Redefining Perfect

The Interplay Between Theology and Disability

Copyright © 2017 Amy E. Jacober. All rights reserved. Except for brief quotations in critical publications or reviews, no part of this book may be reproduced in any manner without prior written permission from the publisher. Write: Permissions, Wipf and Stock Publishers, 199 W. 8th Ave., Suite 3, Eugene, OR 97401.

Cascade Books

An Imprint of Wipf and Stock Publishers

199 W. 8th Ave., Suite 3

Eugene, OR 97401

www.wipfandstock.com

paperback isbn: 978-1-4982-3310-1

hardcover isbn: 978-1-4982-3312-5

ebook isbn: 978-1-4982-3311-8

Cataloguing-in-Publication data:

Names: Jacober, Amy E. | Foreword by Palermo, Nick

Title: Redefining perfect : the interplay between theology and disability / Amy E. Jacober.

Description: Eugene, OR: Cascade Books, 2017 | Includes bibliographical references with index.

Identifiers: isbn 978-1-4982-3310-1 (paperback) | isbn 978-1-4982-3312-5 (hardcover) | isbn 978-1-4982-3311-8 (ebook)

Subjects: LCSH: People with disabilities—Religious aspects—Christianity. | Theological anthropology. | Title.

Classification: bt732.7 .j35 2017 (print) | bt732.7 (ebook)

Manufactured in the USA 06/06/17

Table of Contents

Title Page

Foreword

Acknowledgments

Chapter 1: ntroduction: Are you in or are you out?

Chapter 2: God: Who do you say I am?

Chapter 3: Sovereignty: Who’s in charge here?

Chapter 4: Theological Anthropology: What does it mean to be human?

Chapter 5: Sin: Who or what is broken?

Chapter 6: Ecclesiology: Who’s missing?

Chapter 7: Hospitality and Hesed: Isn’t welcome enough?

Chapter 8: Worship, Discipleship, and Vocation: How do we participate?

Chapter 9: Scripture: How is disability addressed in the Bible?

Chapter 10: Suffering and Hope: Is God with me?

Chapter 11: onclusion: Who’s in and who’s out—A final word

Bibliography

For all of my friends needing to be reminded that God has always included them. Thank you for teaching me over the years.

Foreword

In 1986 , Young Life began a ministry to youth with disabilities known as Capernaum. We didn’t have a guidebook; we simply knew these youth were created in God’s image and they needed to know Jesus, too.

Thirty years later, accessibility to public spaces—education, buildings, even the digital world—is typical. The church and theological community however, are still lagging behind. Sixteen years into the twenty-first century and the church is in need of a theology regarding persons with disabilities and a corresponding hospitality. It is time for the church to wrestle with the inclusion of all people, typical or not, and to wrestle with theology and the reality of disability.

In 2004, Young Life’s Capernaum pioneered a week of camp, bringing together 100 kids with disabilities, 100 able-bodied kids, and a group of leaders. Our leadership team needed extra help, and one of the persons who stepped forward was Dr. Amy Jacober.

Amy and I became fast and deep-spirited friends. I watched her serve at this camp with a profound sense of wonder. I discovered what I would only come to know in a deeper way over the next twelve years. She is a woman with a superb mind and a tender, generous heart. She is a woman who knows how to dance with theology and praxis, and she has been teaching me that very dance in our twelve-year friendship.

As a pastor and passionate lover of Jesus and people, Amy ministers with and to kids with disabilities. She has been a trusted conversation partner as we sought ways to continue growing in our ministry to and with persons with disabilities. As a skilled theologian, Dr. Jacober has done the deep study of Scripture and history and brought together the praxis and critical analysis needed to form a cohesive theology with a disability lens.

Some years ago, I came across a painting in a market in Germany, a painting of persons in wheelchairs dancing with typical dance partners. The swirls of colors and the interplay of the persons and the dance captivated me. (I would share the painting with you but the work is unsigned.) This book provides a narrative to that image. It is a manual of the dance between disability and theology. What I would have given for a book like this when I began my ministry!

This book leads us to consider the nature of life for those with disabilities as it relates to faith. It reveals to us our failure to consider disability within the Scripture which leads us down the road of a disabled theology. This book is where a deep knowledge of the Scriptures meet a deep knowledge of those with disabilities. That result is a holy dance that leaves us all more complete in understanding how God intended it for individuals and faith communities.

As you read, I pray in God’s providence that he places someone with a disability in your life, that will allow you to read this book in a very personal manner. I pray that if you have a disability, that you are encouraged and experience a deep sense of inclusion. If you are a minister or caretaker already involved, may this encourage and serve as a tool to open conversation for further inclusion. Read on. You are about to be challenged and engaged! 

Nick Palermo

Founder, Young Life Capernaum Ministry

Co-Executive Director, Emmaus Inn Ministries

Author, Missing Stars, Fallen Sparrows

Acknowledgments

Someone recently asked how long I have been writing this book. The honest answer is that it has been in the making for more than fifteen years. It may not be that I had put down any words or concepts, but it has been there, forming and reforming with a thousand conversations, camps, ministries, and moments where I witnessed my friends with disabilities being included and sadly, at times, excluded. I lost count of how many times I pitched the idea for a book on theology and disability only to be told there was no market for it. Several years have passed and times are changing. I am grateful in many ways for the delay in publication for what I offer today is far more mature than my enthusiastic but embryonic thoughts of years ago. Still, there is room to grow. It is my hope that this will be just the beginning of conversations for some. It is my prayer that others who read this will take the ideas further to honor God and remind us all that those who are too often marginalized are the most Christ-focused of us all.

The intensity of my past couple of years would seem exaggerated were I to offer an account here. Suffice it to say, this book would never have made it if not for my tribe who served as supporters, cheerleaders, helpers, readers, chefs, and babysitters. For each, I am profoundly grateful. The first among many would be my very own littles, Sedona, Keliah, and Deaglan, who teach me more about the art of hospitality and inclusion than anyone else I know. I’d also like to thank my father, John Jacober, who stepped in to help create space for me to write on more days than I could count; my mom, Betty Jacober, whose unending love sustains me; my mother-in-law Carolyn Peacock, who rearranged weeks of her time to be with the kids so I could write. Joyce del Rosario provided much needed sustenance for marathon jags of writing in the form of prayers, encouraging texts, and a delivery of meals so I didn’t have to divide my attention on precious days of writing. Mindi Godfrey offered unending wisdom and practical advice. Nick Palermo was the first to say out loud, years ago, that I needed to write this. He never gave up cheerleading me on even on days when I was unsure. David Thames, whose grace in allowing our entire family to serve in the Phoenix NE Young Life Capernaum club, is astounding. Megan Grey-Hering always seems to know how to send fairy dust for a little magic when I need more hours than a day could hold. Tio Jesse Villegas, who took the kids for all day adventures to allow me time to work. Carolyn and Richard Vash, who taught me that a quadriplegic is far from helpless or pitiful and grew into lifelong family by choice. For each of you, I am grateful.

Finally, I could not have done this without my husband, Cory Peacock. There are no words that could come close to expressing how grateful I am for you in my life. You, above all others, have been my partner, editor, child wrangler, and biblical advisor. As iron sharpens iron, I am better for having had your support. You helped me to articulate more clearly what I struggled to put in words. Thank you.

Rev. Amy Jacober, PhD, MDiv, MSW

1

INTRODUCTION

Are you in or are you out?

Remember that God is writing a story in your lives as you minister in his kingdom, but your story takes on meaning because it is part of an eternal story.—Paul Hiebert

Ideas of perfect seem to be everywhere. Every night I look at my own children as I tuck them in and we say prayers. I am filled with wonder that I get just a little time with them and as they drift to sleep, I think they are perfect. I daydream of what they will be like in the years ahead and fear the day they ask for a tattoo, or worse, just show up with one. This is not because I dislike tattoos but because at their tender age their skin is beautiful, so perfect. Note that I did not say flawless. I know every bump and scar they each have. In waking hours, I hear angst pouring from my seven-year-old when she can’t master a task immediately and bursts into tears saying, It’s not perfect! I hear the rips of paper as my five-year-old shows me a drawing that looks to my eyes like every other drawing she has done but she declares, It is not perfect. I, then, come to comfort my three-year-old as he sobs, rolled in a ball next to a pile of Lego blocks that he can’t transform into the picture he holds in his mind and he says, It’s terrible, it’s not perfect.

I could list my own litany of struggles with perfection: my insecurities for looks and talent growing up; my insecurities for being smart enough to know I was not the smartest person in the room during my PhD program; and my struggles to fit in and be perfect when I was the only female faculty in my department and the youngest faculty member by far. I would be nearly paralyzed by my anxiety to produce academic articles that were worthy of anyone else’s time and not merely padding my CV. Many articles, as a result, were left unfinished. I sought perfection in everything I could control, knowing so much was out of my control. Yet, this often left me missing out on the messy fun that is life.

The church should have been the place to garner a little perspective, but it only brought more anxiety over the concept of perfection. As a young child I was told how much God loved me and enjoyed being with me. Then, just as hormones and adolescent cliques were kicking in, I was told that I fell short, that I didn’t have what it took to be God’s beloved anymore, and that I needed to repent of all that I had done to separate myself from the one who, I was told, would always love me. Turns out, I was not the only one to hear this paradoxical message, the three-pronged message that says (1) you are exactly who you need to be, yet (2) you still fall short, and (3) it is up to you to repent and fix it, even if you don’t know what it is.

Perfect can be even more complicated for my friends with disabilities. The message from the world seems to point out every way in which they don’t measure up or aren’t viewed with the same value as typical people. This message comes in a thousand small ways, from the space between racks in a store being too narrow for wheelchairs or crutches, to the unwanted stares and taunts for their appearance, or noise, or leg braces. Many of my friends don’t see others like themselves in the movies or shows they watch, the books they read, or the places they visit. They see the same polished, airbrushed, flawless people we all see.

For my friends with disabilities, the church, too, should and could be a place to hear a different perspective. Unfortunately, we have a long history of language and practice that was never intended to exclude, but exclude it does. As we have become more aware of disability in recent years, the conversations have begun in some circles for what this means for the church. Still other conversations that I have experienced firsthand are too often laced with comments that say things like, this is what we believe . . . unless you have a disability. Such comments carry the subtext of special dispensation for persons with disabilities. As gently as I have been able, I explain that a foundational truth of the church doesn’t work that way. We do not get to say here is what is truth, unless it doesn’t apply to you. When many well-meaning people look at doctrines, the concern is their purity, their perfection, rather than in what ways God’s people were impacted. Unless the doctrine can include those with disabilities, their family, friends, and communities as they are, then the work is not finished. The onus is on us in the church to remain true to Scripture, the work of the church, and the guiding of the Holy Spirit to name and then live doctrinal truths that open doors for everyone regardless of ability.

Long before airbrushing for magazine covers and the barrage