Disability, Providence, and Ethics

Bridging Gaps, Transforming Lives

Hans S. Reinders

• Publisher: Baylor University Press
• Year: 2014
• ISBN:
  9781481303132
• Topic: Teología y religión
• Subtopic: Teología cristiana

Human disability raises the hardest questions of human existence and leads directly to the problem of causality—the underlying intuition that someone, divine or human, must have been at fault.

Christian theology has responded with almost singular attention to Providence, the expression of divine will in the world as the cause of all things. This preoccupation holds captive the Christian imagination, leaving the Church ill equipped to engage the human reality of disability. Theological reflection, argues Hans Reinders, can arise only as a second-order activity that follows after real attention to the experience of disability.

Disability, Providence, and Ethics offers a more excellent way to address this difficult subject. Reinders guides readers away from an identification of disability with tragedy—via lament—to the possibility of theological hope and its expression of God's presence. In particular, Reinders reconsiders two of the main traditional sources in Christian thought about Providence, the biblical text of Job and the theological work of John Calvin. Throughout the book, first-person accounts of disability open up biblical texts and Christian theology—rather than the other way around. In the end, a theology of Providence begins with the presence of the Spirit, not with the problem of causality.

1

DISABILITY AND DIVINE PROVIDENCE

There are but three alternatives for the sum of existence: chance, fate, or Deity.

—James Douglas

Introduction

What, if anything, has divine providence to do with disability? The question is by no means an obvious one to ask, except for the fact that a remarkable number of people hold strong opinions on the matter, both with regard to the question itself as well as to what seem to be plausible answers. To start with the former, for some the question as such betrays a suspicious desire to overcome disability by spiritual means. It inevitably pitches the realm of the fallen, rejected body against the realm of the soul, where healing, and ultimately redemption, can be found. For others the question as such is not suspect, and the answer is important, at least to them, even when none of the plausible answers goes uncontested. For some there is great consolation in the belief that disability is part of divine purpose, which for others again is totally unacceptable.¹

Surfing on that endless sea of popular opinion called the Internet, I came across the site of “BBC Disability Ministry” and was quite surprised in finding the following expression of faith on the matter:

We exist to spread a passion for the supremacy of God in all things for the joy of all peoples through Jesus Christ. We joyfully live with a hard and glorious truth: God purposes disability in his creation for his glory and for our good.²

The surprise was because my European mind led me to assume that behind these lines was the respected public institution of the British Broadcasting Corporation. Of course this was a mistake. “BBC Disability Ministry” turned out to be a volunteering group of people with disabilities attached to Bethlehem Baptist Church, which was unspecified on this site. Its statement is a particularly strong example of the claim that God uses disability for his own glory, as well as for the good of the people involved. Without further qualification not very many people would be prepared to accept this.

Moving on in cyberspace, I stumbled upon one of the most succinct dismissals of this view that I have ever come across. I found it in a poem called “Ars Poetica” written by the American poet Gregory Fraser. In this poem Fraser sets out to define the nature of his poetry in light of the existence of his brother Jonathan who lives with spina bifida: “All poetry begins, from now on, with my brother’s legs.” Fraser has no patience for endearing talk about God’s friendship, let alone love, for his disabled brother. For those who are tempted to make sense of disability in religious language, he has a very clear message: “Call God ‘cause’ and be done with it.”³

This comment not only squarely opposes the triumphant tone of exalted views on what faith can do for you; Fraser also puts his finger on the spot where religious “explanations” hurt the most. People with disabilities have been harassed by comments about their sin, lack of faith, or inadequate prayer. Get rid of all this religious stuff, Fraser suggests; replace divine will by “cause” and there remains nothing to explain.

Particularly offending are religious explanations when they are felt as exonerating God, while blaming the victims. In his book Vulnerable Communion, Tom Reynolds makes this point:

Making the victim responsible is a typical path toward resolving the issue. … We look for a reason, someone or something to blame. And if God is not culpable … then the individual is presumed at fault, either bringing on divine punishment as a response to sin, or pre-empting the healing process because a lack of faith.⁴

When religious explanations of disability come up, people sooner or later find themselves discussing the will of God. If God’s will has anything to do with it, then what does he want? So, the question arises of what religious traditions mean when they say that what happens in our lives is an expression of God’s will. “Traditions” can be written plural, in this connection, because this question is not only found in Christian discourses on disability, but in Jewish and Islamic discourses as well.⁵

It is with regard to this question that Gregory Fraser’s blunt advice is particularly poignant. Forget about the “why” question, I take him to say, because there is no divine intention here, just natural cause. Not everybody agrees, though. “I know my daughter’s disability has nothing to do with sin or lack of faith, but yet the question must be asked.”⁶ Since the “why” question is on virtually everybody’s lips, it is apparently hard to avoid.

But I should not get ahead of my argument; I should say a bit more about what this book is supposed to do. Looking at the two opposite statements above, the question that interests me primarily is not what divides them, but rather what they have in common—and not only these two, but a whole range of similar statements. What they have in common is that in discussing the issue of “making sense” of disability, each of them is dependent on some conception of the universe, a particular way of looking at the world and our temporal existence in it. The controlling picture in the background seems to be something like this: in the ordinary flow of things, the world appears a pretty reliable place, a stable habitat for humanity, if you will. Occasionally things seem out of joint, however. People’s lives are turned upside down, shaking their belief in reliability. Tragic events and horrific accidents occur in their lives. This is when the question arises: Why this? Why me? The world throws all kinds of events upon people, some of which raise this question in that they disrupt what they would ordinarily expect from their lives. Apparently, being confronted by disability is one of such events.

Yet people’s responses differ, and they differ widely. According to some the universe is a well-ordered space, kosmos rather than chaos, to use ancient Greek terminology. According to others, however, there is no rule in the universe but chance and fortune, which makes the notion of a stable and reliable world anything but certain. The issue of making sense of disability, then, is ultimately about what kind of space one believes the universe to be. This is a question that warrants investigation.

The perspective from which I will pursue this investigation is that of religion. Religious traditions have characteristically adhered to the notion of a well-ordered universe (at least the traditions of the Abrahamic religions of Judaism, Islam, and Christianity have). The reason is their belief in a Creator God who “rules heaven and earth,” as the Hebrew Bible puts it. This is why “God” in these traditions is spoken of as a providential God. The notion of a well-ordered universe goes hand in hand with the notion of divine providence, and this notion is the central concern of this study.

However, in investigating divine providence, I will not start with investigating sacred texts and classical treatises based upon them, the kind of sources that theologians usually start with—not because I think other sources of wisdom are preferable, but because I think that theological explanation is at its strongest when it addresses questions that spring from our own experience. When, for example, Gregory Fraser—or anyone else for that matter—in view of his brother’s disability suggests that we “call God ‘cause’ and be done with it,” then the question is what experience makes such a statement intelligible. What are its presuppositions, and what are its implications? The same goes mutatis mutandis for any competing statement on the same subject. It seems to me there is no better way to understand what people believe, and why, than by following the logic of how they try to make sense of their experience, as they report it, and then turning to the wisdom and insights of ancient sources to see whether—and, if so, how—these sources shed their light upon that experience.

Given the strong sentiments when it comes to “disability experience” and the many different ways of representing it, however, it is clear that I am entering a minefield here. The danger of offending people’s most intimate feelings lies on every corner of the road ahead. This cannot always be avoided, and in the present case there is a particular reason to be very cautious indeed: I am not a disabled person myself, at least not for the time being.

In starting with the question of how disability experience is accounted for and what this tells us about the underlying beliefs, I can only speak from what I have heard and read from people with disabilities and their families. Representing their views, however, is a sensitive issue indeed. In recent times, the experience of being misrepresented has been abundantly testified. Representation of disability is a tricky business, apparently, particularly because there are issues of stigmatization and marginalization at stake, especially when those who are not stigmatized and marginalized are the ones that are producing statements about how people feel about their disability. Regarding such statements people have learned to ask who is behind personal pronouns like “we,” “they,” “us,” “them,” “our,” or “theirs.” In the present case this is as well a relevant question to ask.

Even though I do not speak from firsthand experience, I do think it is possible to listen to what people say, and listen carefully, in order to try and understand what they are saying. One of the ways this can be done is what I intend to do in this book, which is to find out what convictions and beliefs make their experience intelligible. Therefore, listening carefully to what people say about the meaning of the question “Why this? Why me?” in their lives is the appropriate way to start.

Finally, in taking the “why?” question as my point of departure, it appears this inquiry is buying into the premise of disability as a tragedy, comparing it to horrific accidents and other catastrophes, against which many people with disabilities and their families would level strong objections. As a matter of fact, I do not believe that disability is first of all a tragedy, because what makes it a tragedy, if at all, are mostly other people’s responses.⁷ But even if disability per se is not necessarily a tragedy or a disaster, the experience of being confronted by it certainly is, at least initially. This experience turns people’s lives upside down, as the literature of their first-person accounts abundantly testifies. Of course it can be argued that disability will only appear as a tragedy because the people involved have been socialized within the “cult of normalcy,” to borrow Tom Reynolds’ phrase.⁸ But precisely because they are so socialized, the experience of tragedy cannot but be very real to them. The fact that underlying the notion of tragedy are often mistaken beliefs about disability is something they do not know at the time of their experience. At that time, people have yet to find out ways to regain confidence and trust that there is life “beyond tragedy.” As I have put it elsewhere, for most people the experience of disability as tragedy is real because it is prior to discovering the grounds on which that experience can be contested.⁹

Making Sense of Disability

Before we proceed, however, I need to clarify the language of “making sense” of disability. It is not unusual for theologians to think about the kinds of questions they raise as questions about meaning. This holds for questions about disability as well. The late Nancy Eiesland, for example, expressed in her work a wholehearted commitment to the struggle of the disability rights movement of which she considered herself to be a part. But at the same time, she confessed that this commitment failed to respond to some of her spiritual and theological questions, such as the question, “What does my disability mean?”¹⁰ Similarly Arne Fritzon, a Swedish theologian with cerebral palsy and a member of the Ecumenical Disability Advocates Network (EDAN), writes about “Disability and Meaning.”¹¹ Together with Samuel Kabue from Kenya, Fritzson was one of the authors of the document “A Church of All and for All,” issued by the World Council of Churches in 2003, in which they argue that “those disabled people who share a Christian faith … have relied upon certain theological tools to address their existential need to explain the mystery and paradox of love and suffering, coexisting and giving meaning to their lives.”¹² Referring to Jacob’s struggle that left him disabled (Gen 32:24-26), the document further states:

In our wrestling with God, as disabled people we all ask the same basic questions, but the theological enquiry involved may be complex. Why me, or my loved one? Is there a purpose to my disability? The answers to those questions can be influenced by the expected time-span of a disability, and by the time and circumstances of its onset.¹³

What we find, then, is testimony by people with disabilities and their families of the spiritual need to come to terms with their disability. However, as the above quote indicates, what people go through will vary, because their disabilities vary, as well as their living conditions.

This is a fact that often goes unrecognized by those who are talking about “disability” in general, as if the rule one size fits all were applicable. It is not, because the lives of people with disabilities differ from each other just as widely as the lives of people in any other segment of the general population. Disability experience is a fragmented reality because it is identity related. It is not just that people go through different things in their lives; they do so as people with different convictions and beliefs, the mix of which shapes different identities.

In order to address at least some of these differences, I propose to look at two “kinds” of disabilities in particular. The first usually occurs at birth, as the manifestation of a genetic condition, and results in a cognitive or developmental disability. The terminology continues to be shifting, but what I have in mind here used to be named “mental retardation,” and is now internationally addressed as “intellectual disability.” The second occurs as the result of an accident that results in acquired brain damage, now generally known as “traumatic brain injury” (TBI). These widely different conditions provide an example of how various “kinds” of disabilities can get lumped together as if they were similar, apparently because both result in cognitive problems. Ignorance of the difference is demonstrated by the fact that people with TBI are frequently approached as if they had an intellectual disability.

In listening to their stories, it turns out that the main point in which they differ is that people with an intellectual disability have never known themselves otherwise than in their present condition, whereas for people with TBI, their lives are divided into two episodes: the life before and the life after their accident. This difference entails very different issues when it comes to learning to live with a disability. Characteristically, what an intellectual disability means and how you learn to live with it is a question faced by families into which a child with such a condition is born. Most first-person accounts of what families go through in that situation begin with the experience of “devastation,” as we will have ample opportunity to see. “Making sense” is very different in that case from the question of how to adjust to a new kind of life in which you have lost much of what was very dear, as in the case of people who suffer from TBI after an accident.

The act of sense making can be depicted as a spiritual struggle of people in view of their disabling condition, but it need not be. Many ...