Whole Community: Introducing Communities of Faith to People with Intellectual and Developmental Disabilities

By David Morstad

The story of people with intellectual and developmental disabilities is often unknown or misunderstood by people in faith communities. Whole Community provides an introduction to the disabilitys definition and history, and an overview of current issues in ethics, cultural perceptions, and public policy. Through personal stories and often-surprising data, a new framework for relationship emergesone that reaches beyond mercy to mutuality and chooses to see disability as diversity rather than deficit.

David Morstad has steeped his book, Whole Community in years of rich experiences, relationships, and wisdom. The result is an outstanding book that takes the deep and important questions and convictions about living as one body together in Christ and turns that into practical and accessible direction for our Christian communities
Barbara J. Newman, author of Autism and Your Church and Accessible Gospel, Inclusive Worship

In Whole Community, Morstad explores the many important facets of inclusion in faith communities in a straightforward manner, with thoughtful stories and experiences interwoven between the hard questions and realities of the current state of disability inclusion in our congregations. I highly recommend this book for anyone beginning or developing disability inclusion efforts in their places of worship
Karen Jackson, executive director of Faith Inclusion Network of Hampton Roads and author of Loving Samantha

Whole Community is an excellent resource for faith leaders and congregations interested in improving access and inclusion for people with disabilities. Morstad explores a journey toward relationship through which congregations benefit from the gifts and talents people with disabilities bring to the community of faith
Curtis Ramsey-Lucas, editor, The Christian Citizen

• Language: English
• Publisher: WestBow Press
• Release date: Jun 29, 2018
• ISBN: 9781973631910

David Morstad

David Morstad is a widely published writer, speaker and advocate in the disability field. For more than 38 years, he served Bethesda Lutheran Communities in roles that included educational resource development, staff training, Vice President for Communications, and was the Executive Director of the Bethesda Institute. He is a Fellow of the American Association on Intellectual and Developmental Disabilities (AAIDD), and was the 2010 recipient of the AAIDD Religion and Spirituality Divisions Henri J.M. Nouwen Award. He currently serves on the Wisconsin Governors Committee for People with Disabilities, and as an advisor to the Faith Inclusion Network of Hampton Roads and the Summer Institute on Theology and Disability.

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Copyright © 2018 David Morstad.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

This book is a work of non-fiction. Unless otherwise noted, the author and the publisher make no explicit guarantees as to the accuracy of the information contained in this book and in some cases, names of people and places have been altered to protect their privacy.

Scripture quotations are from the New Revised Standard Version Bible, copyright © 1989 the Division of Christian Education of the National Council of the Churches of Christ in the United States of America. Used by permission. All rights reserved

WestBow Press

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Getty Images are models, and such images are being used for illustrative purposes only.

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ISBN: 978-1-9736-3192-7 (sc)

ISBN: 978-1-9736-3193-4 (hc)

ISBN: 978-1-9736-3191-0 (e)

Library of Congress Control Number: 2018907308

WestBow Press rev. date: 06/29/2018

This book is dedicated to the dignity and resolve of those whose story is one of institution walls, silenced voices, and lives deemed unworthy.

Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.

—Jean Vanier, Becoming Human

Contents

INTRODUCTION

The Power in the Stories

Spirituality and Disability

CHAPTER 1: How Do We Choose to See Disability?

The Artistry and the Artist

Gifts Among Us

Healing and Wholeness

The Why Question

The Need for Healing

CHAPTER 2: In the Land of Rhetoric

Accuracy in Terminology

Words and Thinking

The ‘R’ Word

CHAPTER 3: History, Definition, and the Birth of Attitudes

What are Intellectual and Developmental Disabilities?

How Prevalent are Intellectual and Developmental Disabilities?

Where All This Leads Us

Where People Live

How Can People of Faith Advocate?

Employment

Faith Communities and the Future

CHAPTER 4: Blessing or Burden?

Perception of Disability Over Time

A Curse or a Blessing

Eugenics

A Change in Perception

You Must Be a Saint.

How People See Themselves

Bad Science vs. a Willingness to Believe

A Matter of Blame

CHAPTER 5: Ethics and Advocacy

Discrimination

Prenatal Testing

Criminal Justice

Called to be More Than Bystanders

CHAPTER 6: Inclusion and Belonging

Planning for Inclusion

It’s More Than Yes or No

Competence, Deviance, and Acceptance

Church and State Mythology

Growth and Change

CHAPTER 7: A Journey Toward Relationship

Charity as Oppression

Genuine Friendship

Inclusion and Equity

Saints Before Us

A Stewardship of Intellect

The Ordinary

An Ordinary Messenger

Spiritual Expression

CONCLUSION

ACKNOWLEDGMENTS

ABOUT THE AUTHOR

ILLUSTRATION SOURCES

REFERENCES

Introduction

When one sets out to do an introduction, whether it is two guests at a party or a new face in the workplace, there is a common pattern. What’s your name? What do you do? What’s your background? Who or what else do we have in common? This book is a version of that introduction. As such, it is part factual information, part history, and part storytelling. And like all introductions and relationships, the end result may simply be polite and casual interest or, perhaps, the start of something unexpected and long-lasting. Either way, something is gained.

Some years ago, I was involved in a symposium called Bridging the Gap. Its purpose was to bring together two distinct communities, faith community leaders and professional providers of disability services. Both cared deeply for people with intellectual and developmental disabilities but they came at their work with decidedly different perspectives. Our hope was to create connections and raise awareness of people with disabilities, their presence in communities, and the value of faith community connections. The experience provided an example of the need for introduction and honest conversation. When asked, What is it that keeps us from working together more effectively?, the answers were uncomfortably candid. The owner of a small agency that operated group homes said simply, We don’t know who you are. When you [local church groups] knock on our door, we don’t know if you’re there to seriously welcome us; or if you’ve come to do a healing service in our front yard. To tell you the truth, we’ve seen both, and now we’re skeptical of everyone.

When asked the same question, one of the clergy answered, Frankly, it used to be easier to find people with disabilities. We had a group that would visit the institution on Sunday afternoons and it was a great fellowship experience. Now, those places are all closed, and you’ve done such a good job of blending your group homes into the community and keeping information private that we have no idea where you went. Others affirmed what he said and went on to suggest something far more troubling; that, because institutions for people with disabilities were no longer as present, the need for faith communities’ outreach was somehow less necessary, that needs were to a great extent, already being met.

Both points of view need to be acknowledged, but perhaps it’s time for a fresh start, a new introduction of people with intellectual and developmental disabilities to communities of faith.

The Power in the Stories

This disability unfolds itself in stories. Personal stories. In fact, the very subject of this book defies explanation in the absence of them. Information relative to important trends, data and social change abounds, and we can learn much from all that; however, if you ask anyone to explain their connection to the intersection of faith and disability, their response quickly turns to the narrative, a statement something like, Let me tell you about a person I know.

The best way to understand the disability, is to know the people who have it, and it will surprise many that there is a wholeness to be found there. Knowing the whole person is the only way to understand both the person and the disability. That wholeness can only come from looking past the barriers that divide people, whether those barriers are negative attitudes or kind-hearted ignorance. God knows about healing, to be sure, but God also knows about wholeness.

The stories and the individuals featured in them are neither composites nor fictional, they are true stories. Where I have permission to use names, I freely do so. In other cases, where people have preferred privacy, I have been careful to, as they say in HIPAA confidentiality parlance, de-identify the individuals.

I have had several mentors in my life, and I am grateful to all of them. One in particular, though, was significant. Patrick had spent a lifetime becoming a bona fide expert in developmental disabilities.

He was a little older than me and he had seen the evolution of special education services for children and, later, human services for adults. He came to know many things, but his real proficiency was in the development of relationships between people with and without disabilities. Good news for the people who knew him! Common among the many experts I have known, Patrick acquired his knowledge firsthand—he started living with a developmental disability before he was even born and it continued, not surprisingly, for all of his life.

We can all learn from mentors like this. Faith communities and the people who are part of them can have a clear mission, good leadership, lofty goals, and a strong commitment to inclusion. But our only hope for building a true sense of belonging to one another in the presence of the Divine, lies in our ability—moreover, our willingness—to listen and learn from the people who know the disability best. I am grateful to my mentor, Patrick, for leading me early to this one simple but profound realization: Which one of us is the expert, and which one of us is not.

I am neither clergy nor theologian. More important, I am not a person with a disability and, as a non-disabled person, it could be effectively argued that this is not my story to tell in the first place. What follows is the result of forty years of professional work and relationships among individuals with intellectual and developmental disabilities, the vast majority of that time with a faith-based organization, Bethesda Lutheran Communities, headquartered in Watertown, Wisconsin. Though I write from a Christian perspective to what is almost certain to be a largely Christian audience, I am most grateful for both the influence, patience and abundant kindness of friends in the Jewish and Muslim communities.

Coming out of high school, my initial professional direction was music therapy. That was my major in college and my first professional job. While studying for that field in the 1970s, I had a number of valuable jobs and fieldwork assignments in related fields. I was assigned for a time to a Jewish nursing home, a classroom in a Roman Catholic school for blind children, and to a segregated public school for children with various disabilities. Without question, the most influential fieldwork assignment (and later, a paid job), was at a pre-vocational workshop, sometimes called a sheltered workshop, for adults with developmental disabilities. It was little more than a place for people with disabilities to be during the day in order to occupy their time with pointless counting, assembling and packaging tasks, craft projects, music activities and other things people do in place of any real job or legitimate responsibility. The matter of needlessly wasted time aside, the absence of any expected productivity provided a truly unexpected opportunity, the chance to talk to people, to know them as something more than cases to be treated, and to begin to consider a personal epiphany. The best people to help me learn about people with disabilities were people with disabilities. Revolutionary thinking? Only if you are young and inexperienced. I was both.

Spirituality and Disability

There was a French mathematician and chemist named Blaise Pascal. He lived in the 17th century and developed theories of mathematics, dabbled in physics with things like air pressure and actually developed some of the first barometers. He was also a philosopher and, speaking in terms he knew well, he wrote, In the heart of every person, there is a God-shaped vacuum which cannot be filled by any created thing, but only by God, the creator. That was pretty progressive imagery for a guy who died in the 1600s. We all come seeking. We all come with a God-shaped vacuum.

Blaise_pascal.jpeg

Blaise Pascal (1623 – 1662), was a French mathematician, inventor, and theologian. In both science and philosophy he was a seeker who observed, In the heart of every person, there is a God-shaped vacuum.

Still, an unseen and almighty creator is a large and abstract concept for a population of people who have a reputation of generally thinking in more basic and concrete ways. How should we regard that, and what should we do about it? Here is an exercise that might put the question in perspective for us. The next time you find yourself in a room full of people, mentally arrange them in order from least capable or developed to most capable or developed.

I don’t know how successful you can expect to be, but chances are pretty good that you have a lot of questions. What is meant by ‘developed’ or ‘capable’? Does it mean able to apply reason and make good decisions? Or, that they got good grades in school? Or, that they are skilled in their employment? Or, capable