The Julian Way

A Theology of Fullness for All of God's People

Hancock

• Publisher: Cascade Books
• Year: 2018
• eBook ISBN: 9781532611605
• Topic: Theology & Religion
• Subtopic: Christian Theology

This book invites its readers to an exploration of some of the greatest theologians in Christian history through the lens of disability theology in order to understand how the Christian Church is intended to deal with the ever-evolving concept and reality that is the disabled human experience.This books brings together an account of the history of disability civil rights, beginning in the early twentieth century and evolving to the present day. It takes a look at some of the foremost theologians in Christian history as seen through the lens of disability theology, in order to help the reader gain an understanding of a diverse, unique, and ever-evolving culture.According to the CDC, as of 2015 approximately 53 million Americans live with some form of disability. This book attempts to offer a new way forward for the church to engage with this incredibly diverse, unique, and wonderful culture by offering first a brief introduction to the history of disability civil rights to allow the reader to understand and experience how many of the trends and forces that shape civil rights on a broad national level were present from the very beginning within the disabled community and the movement towards the ADA. Then, by exploring some of the greatest theologians in the history of the church, this book hopes to illuminate the ways in which the church has served those with disabilities well, and in many cases not so well, throughout its history. Finally, the book will close with a hopeful, optimistic, and yet practical way forward rooted in the concepts of hospitality, community, and mutuality that we call the Julian Way.

Part I

Disability: Conceptions, Civil Rights, and Theology

1

Models of Disability

I will begin this book by examining five distinct approaches to the study and understanding of disability, popularly called the “models of disability.” The ones that we will look at in these opening pages are the medical model, the moral model, the social model, the limits model, and finally the cultural model. While the medical, moral, and social models are far and away most influential in helping us develop our latter twentieth- and early twenty-first-century approaches to disability, the limits and cultural models attempt to provide an innovative framework for helping us better understand the disability experience. I will begin our exploration of each model with a brief story or narrative vignette to help you, my reader, gain a slightly more first-hand perspective on the models of disability.

Medical Model

It’s the summer of 2008, and my wife Lisa and I had been married exactly one week when we went to the mountains of New Mexico for a three-day honeymoon getaway. The mountain air was great, the feeling of being newly married was both invigorating and like a whole new adventure, and the time together was absolutely splendid. Upon checking out from the hotel, the desk clerk mentioned that she had seen us around the last several days and looking at my wife holding my bath chair before loading it into the car, she asked, “So, that guy you’re with, are you his nurse or physical therapist?” I wish I could relate this story in the context of being a one-time-only humorous, isolated incident, or even, heck, an occasional occurrence would be nice. Unfortunately, I cannot count the number of times that my wife has been asked by strangers whether she is my physical therapist, my nurse, or my home care worker. The frequency of these situations during our nearly nine-year marriage only seems to underscore the level to which the general public largely and almost exclusively engages disability and the life of disabled people through the lens of a medical situation or circumstance. During my time speaking to local congregations and other church bodies regarding disability theology and the rights and dreams of people with disabilities, I am often surprised at how much amazement there is within my audiences when I point out that the medical model of disability is indeed only one way of understanding the disabled experience. Despite the seeming pervasiveness of the medical model, it is indeed one, just one, of many models or approaches to disability.

It would not be an exaggeration to say that the medical model is the overwhelmingly dominant mode of discourse surrounding disability in general society. The medical model, in its simplest form, locates disability within the body of an individual, most specifically in the malfunction of some specific part of the body or bodily process. In her book, Disability and Christian Theology, Deborah Creamer offers some indication of the ubiquity of the medical model when she suggests, “this model is closest to the commonsense idea that a disability is what someone has when his or her body or mind does not work properly.”1 This viewpoint on disability is so taken for granted within the general culture that it is no longer seen as one viewpoint or model among many, but a given fact. I contend that if one were to ask a hundred people on the street to give the easiest and most common definition of disability, it would invariably fall within the medical model.

The medical model, as it is now understood, did not begin to take hold in the United States and Europe until the end of the nineteenth and early twentieth centuries. Arguably, the medicalization of disability truly took root in the effort to denote difference in relation to a standard of normality. Such attitudes can be seen in the early twentieth century during what Sharon L. Snyder calls “eugenics-era legislation.” For instance, the 1911 Chicago Ugly Law proclaimed: “any person who is diseased, maimed, mutilated or deformed in any way so as to be an unsightly or disgusting object is hereby prohibited from exposing himself to public view.”2 Lest one be tempted to think that such thinking is a relic from a bygone age, the forced institutionalization of many people with severe physical and intellectual disabilities was a fairly standard practice until the early 1970s.

This particular model actually exposes a thought process existent for centuries regarding disability. The physical flaws of persons with disabilities have even been used as metaphors for a whole host of societal ills. For instance, “whereas an ideal such as democracy signifies an abstracted notion of governmental and economic reform, de Baecque argues that the embodied caricature of a hunchbacked monarch overshadowed by a physically superior democratic citizen, for example, proves more powerful than any ideological argument.”3

Although disability rights took a quantum leap forward with the passage of the Americans with Disabilities Act (ADA) on July 26,1990, followed swiftly by the Individuals with Disabilities in Education Act (IDEA), which President George H.W. Bush signed into law on October 30, 1990, individuals and families that deal with disabilities are still living in a world where they confront the medical model of disability as the singular view almost from the beginning of life.

Gail Landsman explores the early exposure many mothers of young disabled children have to the medical model in her article, “Mothers and Models of Disability.” Out of her study, Landsman discovered that “in their encounters with a variety of early intervention service providers, mothers tend to experience the medical model in its rehabilitation variant.”4

In this version of the medical model, the goal of therapy with children who are developmentally delayed is to move toward or approximate the norm in appearance and behavior. For example, the list of aims in a pediatric physical therapy text for early treatment of a child with Cerebral Palsy includes “[developing] normal postural reactions and postural tone . . . [counteracting] the development of abnormal postural reactions and of abnormal postural tone . . . [and preventing] the development of . . . deformities.”5 In this list of goals, we see the other side of the coin of the medical model. Where earlier we saw objectionable, outmoded laws such as the Chicago Ugly Law, now we see the more benign and gentle side of the medical model. The rehabilitation undertaken by many medical professionals regarding individuals with disabilities can truly have positive aims. Yet, the medical model still medicalizes disability to the point where the goal is to achieve “normality.”

Social Model

A year and a half into our married life, my wife and I had saved for a large-scale honeymoon trip to Disney World. During the first day at Disney World, we were at the Hollywood Studios when my wife remembered that the Rockin’ Roller Coaster was located there. Being a rollercoaster aficionado, Lisa knew we had to go. The thing that makes the Rockin’ Roller Coaster different from other rides, along with its incredible speed and loud music, is that it is in an indoor roller coaster where the track is located in the floor of the building, which means that the ride actually launches from a point slightly below floor level, which means that my wife had to take me from my chair and bend down and with the help of other ride patrons get me positioned in the roller coaster seat. While this is inconvenient, it is something I have basically been doing all of my life. My social-model real world experience truly began when getting out of the ride. First of all, I should say that the person operating and supervising the ride probably knew we were in for a rude shock, because they let us go around twice, which, as far as I know is unheard of at a ride at Disney World. At this point I should also add that Disney World as a company is largely renowned within their theme parks for paying special attention and taking exceptional care of children and families with a wide and complex range of disabilities. Part of the reason we wanted to go on our honeymoon there is that they had taken such good care of me as a small child. When I was a child, that excellent experience just sort of happened, so I was unaware of any preparatory work my parents had done in obtaining special disability access passes or any equivalent identification. So, imagine my surprise when, disembarking from the roller coaster—from below floor level, mind you—my wife and I had to essentially have me crawl out of the roller coaster car up onto the floor, and then crawl from the floor up into my chair, all while ride staff watched, unwilling or unable to help, all because we did not have the relevant disability identification. I should say that after we got the handicap access pass and diligently explained to other ride operators that we were not going to sue them if anything should happen, the rest of our vacation passed swimmingly. But on that day, in that moment, both because of the physical barriers located in the design of the roller coaster and because I did not have the proper park identification marking me as someone who had a socially acceptable disability, I was forced to experience the limitations and physical hardships of my disability to a degree that up until that point I never had before. When the pioneers of the social model talked about the barriers of the physical and social environment changing something from an impairment to a disability, this is precisely the type of experience to which they were pointing.

The social or minority group model of disability offers a viewpoint on disability that does not see disability as purely a medical phenomenon. Rather than viewing the world of disability through a medical lens, this framework proposes that an individual dealing with physical difficulties is an impaired individual. Disability, then, comes about when the impaired individual interacts with a social environment that imposes physical and societal barriers to their full participation in society and/or views their impairment in inherently negative terms. The social model was first developed in Britain through the work of sociologist Michael Oliver and others whose arguments were formalized in a 1976 statement of the Union of the Physically Impaired Against Segregation claiming that:

It is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. To understand this it is necessary to grasp the distinction between the physical impairment and the social situation called “disability” of people with such impairment. Thus, we define impairment as lacking all or part of a limb, or having a defective limb, organism or mechanism of the body and disability as the disadvantage or restriction of activity caused by a contemporary social organization which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. Physical disability is therefore a particular form of social oppression6

The above quotation demonstrates the goal of the social model—to move the disability conversation from one dealing with medical issues and a “normal versus different” dialectic towards a conversation that works for social and political action. The social model seeks to illustrate disability a...

Table of contents

• Title Page
• Foreword
• Acknowledgments
• Introduction
• Part I: Disability: Conceptions, Civil Rights, and Theology
• Part II: A Community Story
• Conclusion
• Bibliography