Wondrously Wounded is a book that Brian Brock would not have written were he not a father—specifically, were he not the father of Adam Brock. It is no surprise, then, that the argument of Wondrously Wounded cannot be presented without some reference to Brock’s life, and without some attempt to account for Adam’s. Adam, Brock adverts in his preface, would be considered “profoundly intellectually disabled.” In many ways, the book provides a study in the violent theological and political implications of such labels, and yet labels provide a basic roadmap for the reader. Adam carries diagnoses of Down syndrome and autism. On more than one occasion, he has required severe medical intervention to save his life. Throughout his life, Brock argues, Adam has been a credible witness to God.
Here we come to the substance of the argument of the book. One way to read the book is as a beginning-to-end critique of privation. In its usual mode of operation, theology always opts for the path of least resistance, absorbing new problems into already present structures and forms of thought. When it comes to disability, theodicy proves to be the tool lying most readily to hand. Few medical words are as inherently theodical as “disability,” the semantic function of which relies on its privative lexical character.
Privative thought requires the quantification of the human good. The strictures of privation necessitate a calculating approach to human lives, weighing them to determine the extent of their diminution. The result is a division in the human race, which marries neatly with the power differential typical of public disability discourse in the modern ethos, “What should we do about them?” (36). Privative theodicy enables a certain academic precision, but at great cost. It cannot capture the expansive significance of a life such as Adam’s, Brock argues. “My hope is to give you a sense of the wondrous beauty of Adam’s form of life” (xii). The book exposes the fetid roots of medical, political, and theological thought and practice that might wish to question this beauty.
In its first part, the book deploys its titular terminology of “wonder” as form of reparative grammar designed, in part, to enable non-theodical engagement with disability. A longtime reader of Augustine, Brock retrieves the concept of “wonder” from the North African’s pastoral consideration of anomalous lives. Brock hones in on the personal fidelity and agency of disabled persons in Augustine’s reflections. The disabled carry a “strange vocation” (29), and all too regularly reveal the impiety latent in the uncomfortable gaze of the observer. As Brock establishes the grammar of wonder, a doxological imperative slowly emerges. It would be profane to see anomalous births as signs only of a fallen created order, as though non-normative life provoked reduced wonder and amazement. The parable of the Good Samaritan proves paradigmatic here, as the one who sees a person rather than a problem. These strands of perception, gaze, embodied life weave throughout the rest of the book’s argument.
Part 2 moves into a theological consideration of prenatal care. Whereas wonder engenders doxology, Brock highlights the anti-doxological character of the apparatus of modern prenatal screening, designed as it is to suppress certain forms of human life. Brock reflects, “Human beings are embodied creatures from conception, but they kill some bodies without grieving them, most obviously those of animals, human fetuses, and enemy combatants. To observe this reality is to raise the question of what it means to recognize a life, a body, as worthy of grief” (80). The annunciation provides the template for the recognition of a “new one.” To treat a new life as a biological accident muffles the joy of Mary’s song.
The third part develops these themes as it offers critiques of medical ethics, particularly the work of Tom L. Beauchamp and James F. Childress, whose book, Principles of Biomedical Ethics, continues to hold significant influence. In defining certain acts as “supererogatory”—going beyond their standard ethical principles—Beauchamp and Childress provide a “moral get-out clause” for situations entailing a degree of risk, giving alleged ethical validation to abortions in the circumstance of possible disability (104). For the Christian, Brock proposes, the risk that a child might be born with a disability cannot be the morally determining feature of a pregnancy. The industrialization of the medical practice adverts to the diminishment of suffering, and so advocates morality based on “quality of life.” Brock leans into disability theology’s character as an identity discourse to problematize such judgments.
With these critiques in hand, the fourth and fifth parts offer a reframing of health and disability. Brock makes use of Franz Rosenzweig to dismantle essentializing theologies, and instead draw one’s gaze to the particular forms of creaturely life. Brock holds that norms deny creatureliness, with all its wild and cascading variability. Brock’s experience of Adam is in part one of political agency, Adam reconfigures Brock’s vision and understanding of society. This new gaze anticipates the transformed perception of eschatological hope. Brock finds himself unable to read Adam’s autism as a tragic disability, but a community-defining wonder. Adam reveals something true about Christian hope and the nature of the church. “Theologically speaking, to experience someone as disabled is not to recognize them, but to misrecognize them” (196). Through a close reading of 1 Corinthians, Brock wants to identify the church as the community of fixed attentiveness to the distinct humanity of all, which enables gift-giving, communication, and listening. Brock construes the church as a place where the witness of Adam and those like him—with their strange vocations—can be heard and received.
The respondents in our symposium pick at some of the threads of this argument. Brock offers a singularly positive vision of disability theology, and its potential to remake theological endeavor and Christian self-understanding. Frances Young, who has published and spoken widely of her own experience of being a mother to Arthur, a man with intellectual disabilities, affirms the imperative to doxology, but questions the absence of an account of failure in Brock’s book. Can a theology of disability finally sidestep the question of theodicy? Has God failed, in that many of forms of disabled life are not only manifestations of creaturely difference, but instances of intense human suffering? Carolin Ahlvik-Harju suggests that the gendered complexities of bodies is understated in Wondrously Wounded. She presses Brock to consider the gendered power dynamics present in medical ethics. How does Brian’s experience of Adam’s birth differ from that of his wife, Stephanie, and what does this difference mean for the theological argument of the book? Pulling at the same thread as Young, Ian McFarland embraces the sublimation of natural evil to wonder, but challenges Brock to reconsider whether wonder necessarily means “good.” Would it not be better, he asks, to think wonder as unusual rather than inherently good? Miguel Romero probes the structure of Brock’s argument, wondering if it is possible to engage with it critically without simply dismissing Brock’s experience of life with Adam. Romero recounts what it was like to grow up with a disabled brother, and pushes the difference between seeing a life as strange and seeing a teaching as strange, because it does not account for the life of a loved one. Finally, Matthew Burdette offers the parable of the sower as an alternative lens for disability. He draws our attention to Emmanuel Carrère, who puzzled over his own passage from faith, and the manner in which perception alone did not prove sufficient for transformation. Burdette encourages a fuller thinking of agency and practicability, in particular, he remarks on the significance of being the political object of someone with a disability.
Across his responses to each of these essays, Brock develops his arguments in new directions, offering necessary clarifications, and positioning his work more explicitly in relation to feminism, Thomism, and tragedy. Brock’s book, with its uniquely hopeful vision of differentiated life and witness, will doubtless continue to provoke engagement within the world of disability theology. The carefully constructed essays in this symposium show the way that one’s posture toward disability quickly drives deeply into some of the most important questions for theology itself: the divine nature, human personhood, creatureliness, theodicy, gender, and politics. What would a theology animated by wonder and mutual recognition of each other’s humanity look like? Our panelists push this question in what follows.
The Personal Is Theological Is Political Is Poetical
One important slogan of second-wave feminism was “the personal is political”—the title of an essay written by Carol Hanisch in 1969. On a general level the essay implied that women’s lives were not the outcome of individual choices but part of a systematic patriarchal oppression. Although contemporary feminism is a complex movement with a variety of views, the slogan still applies. In a similar spirit the disability rights movement has for decades promoted the slogan “nothing about us without us”—highlighting that nothing should be decided about people with disabilities without their presence, participation, and inclusion. These slogans have for many people become important words of encouragement, words of a fighting spirit, words describing their longing to belong. They have also become a driving force behind academic work.
As I read Brian’s book Wondrously Wounded these slogans came to mind at several occasions. Sometimes simply because the gentleness in Brian’s words is such a beautiful contrast to the image of people protesting, shouting, and demanding their rights in a world created for togetherness. Although I have read Brian’s previous works, this is the first time that I was truly hit by the philosophical and intellectual depth that characterizes his writing. I cannot describe it in any better words than intellectual poetry. This book is like a complex poem that is to be read slowly and carefully, a poem that demands your constant attention but leaves you at peace, a poem filled with phrasings to dwell upon—perhaps most appropriately in prayer.
However, the movement slogans also came to mind at times because I sometimes missed the fury with which so many women or people with disabilities and their advocates throughout history have had to claim their place in the public space. A fury that often transcends books in which the personal perspective is so prominent as in this particular one. In the beginning of the book Brian does warn—or promise—that there will be many points that burn “with angry protest at certain gazes and gestures” (8), but in my reading, the anger does take a back seat in all the gentleness. This is not to say that Brian is timid as he points out injustices or intellectual flaws in others reasoning, because he is not. He takes on not least medical ethicists Beauchamp and Childress with an intellectual hammer and crushes their arguments with utter brilliance. But all the time with kindness, it seems. And perhaps this is what good argumentation looks like when the arguments have matured over a long time, and when the thinker behind them keeps his eyes on Jesus Christ and his feet firmly on the ground. For this, I believe that Brian as a contemporary theologian and ethicist has something unique to offer both academia and the church. The level of intellectual poignancy mixed with faithful praise is truly something extraordinary, something much needed in today’s society, and an inspiration for me personally.
Now, the poetic, philosophical, and gentle style aside, Wondrously Wounded also resonates at many points with my own research interests. Not least with my doctoral thesis on prenatal testing, normalcy, and human dignity. I found it absolutely intriguing to see how Brian grapples with many of the same topics as I have done: what does the parental landscape look like in today’s society? What does it mean to have children today? How does the outlook on the world change when you move from a framework of fear to a framework of gratitude? What does it mean to go beyond the various binaries of society? How do different conceptions of health change the way disability is understood? What does it mean to be a person with a disability, to be the caretaker of a person with a disability, to live in a world that does not appreciate difference in the shape of various disabilities? In what way can theology be a critical force in making visible the injustices that people with disabilities endure? And perhaps most importantly: what constructive visions can theology bring for a kinder, more accepting, wondrous world? While I could sit down with Brian to discuss any of these matters for hours, I would like to take this specific opportunity to start a conversation on the issue of gender in the context of medicine and theology, especially concerning prenatal testing.
This probably comes as no surprise to Brian, since we have discussed the matter before in relation to me trying to promote a feminist disability theology as my constructive vision for a more inclusive community. My vision was formed in dialogue with feminist and disability scholars. My key points were that disability ought not be seen as a catastrophe; that people with disabilities ought not be judged on the basis of their genetics; that people with intellectual disabilities should indeed be perceived as fully human; that eliminating people with disabilities from society ought not be seen as an improvement of society; that disability ought not be viewed as the ultimate threat against a liberal value system; that the idea of an inclusive human dignity ought not only be granted people who fit into the normalcy paradigm. I think we agree on many of these points, although our paths towards them look somewhat different. In parts 2 and 3, “Doxology and Anti-Doxology” and “Systems, Norms, and Modern Medicine—Attending to Creatures,” Brian addresses medical ethics and abortion. While there is nothing wrong per se about how this is done, I would like to raise the question of whether it is feasible to, in 2020, undertake a discussion on pregnancy and parenthood—about abortion—without implementing a clear gender perspective? And before anyone rushes into the whole “Brian is a man, hence he cannot or should not discuss feminism or gender”—I would like to make my case.
The epistemic responsibility of a white middle aged man—can a man be feminist?
Let us go back to where I began in the movement slogans of feminism and the disability rights movement. As for the disability rights slogan “nothing about us without us” I think it is pretty obvious that Brian accompanies his theoretical thinking with the witness of Adam’s life. Although Brian is never caught in the perspective of pure identity politics, I think it is fair to say that the message of the book has a level of depth that it wouldn’t have without the experience of Brian being Adam’s father, but also that it in fact is the hermeneutics of experience that serves to show how disability is best understood as an existential struggle. While I know that Brian has struggled with how to tell Adam’s story well, if to tell it at all, I find telling Adam’s story to be part of what I consider epistemic responsibility; that is, having the particular experiences of being Adam’s father. I think telling this story is to practice a responsible ethical and theological analysis in a research field that has had too much to say about the human condition without considering the human experiences we often call disabilities. I do not, of course, suggest that one is obliged to tell such a personal story, nor that one cannot say anything of importance without it.
Now, as for the feminist slogan “the personal is political” I think Brian would have gained another level of intellectual depth had he taken the time to read through his manuscript from a feminist perspective. Not because every book has to entail such, but because the topics of this particular book are too important not to. What the second-wave feminists fought for socially, politically, morally—and theologically I would argue—was to have a say in issues regarding their health, sexuality, family, and reproduction. How refreshing would it be to see a white, accomplished, good man acknowledge the history of oppression of women as a given in the discourse about reproduction! Would it not have been inspiring to see scholars like Alison Kafer, Kim Q. Hall, or Sharon Betcher being referenced in the book—if not only to recognize an important perspective too often ignored in mainstream medical and theological ethics, if not only to acknowledge the fight women’s movements of the past century have fought to end oppression and inequality (for all)?
This is not to say that Brian does not have important things to say about the practice of prenatal testing and selective abortion. He does. Not least because he truly shows how the practice of medicine shapes people’s understanding of what constitutes “a good society, a good life, and even a good body” (59). The problem here is that if one speaks of how medicine shapes people’s understandings of a good body—the body to be shaped after is not only a so-called normal, average body, but also a male body. The female body has within medicine always been the “other,” the one that has been subject to a male gaze and judgment, the one that has had to be controlled—preferably by a male doctor. In the context of prenatal testing. For example, some research results show that male doctors are more likely to “guide” women towards selective abortion than female doctors.1 Hence, I think it would be important to discuss the gendered power relations that might guide the practice of prenatal testing. As genetic counselling is thoroughly discussed in part 2, I would have liked to see some thoughts on specific moral intuitions and power relations that occur in the screening situation. In fact, by telling his and Stephanie’s personal story of the pregnancy and birth of Adam, Brian demonstrates what it can look like when pregnancy is medicalized and when medical professionals exercise control over (vulnerable) women. Highlighting the gendered nature of power relations within medicine would have strengthened the arguments even more. Furthermore, a gender perspective complements a disability perspective because women with disabilities tend to experience more oppression, more violence, and more neglect than temporarily abled women.
I guess what it comes down to is what one understands with the thought behind the feminist slogan, namely that someone’s life is the outcome of patriarchal oppression. Is that question only subject for radical feminists to investigate or is it a matter for all who live in an unjust world? I truly believe that the good men of the world need to take their epistemic responsibility seriously and take on a feminist perspective as a given in their moral and intellectual reasoning. If not only to recognize women’s struggles, but to recognize that the very same pattern of exclusion concerns people with disabilities. I think this is an important step if the important work on disability is ever going to become an actual journey towards change. It is time to listen. It is truly time to listen. I believe this to be one of Brian’s most important points of the book: “devaluing listening makes it impossible to respond to nonstandard cases” (131).
If the purpose of theology and ethics is to find better ways to respond to—standard or nonstandard—people around us I think we have to start listening not only to those who are already matching our preconceived thoughts. In today’s society where neoconservatism has started to become a serious alternative to liberal values, I think it is urgent to discuss issues like reproductive rights and abortion yet again. But I think that as theologians we are to recognize that to say little more than that life is sacred, or that all life is wonderfully created by God (not that Brian is so reductive), too often becomes a way of oppressing women—once again. If we are to have that discussion, it needs to be done properly and never just in passing. In a time when it appears as if the morals of Western societies are deteriorating, it is time to dig into the histories of marginalized groups and find that our time is new, but the struggle is not.
The title for my response to Brian is “The personal is theological is political is poetical.” Wondrously Wounded is obviously personal, deeply theological, pervasively political, and thrillingly poetical. I was deeply touched by it, and I learned a lot. I will certainly read it again, but this time even more slowly.
Tiina Mälkiä, Moraalia vai lääketiedettä? Kuinka sikiödiagnostiikasta ja selektiivisestä abortista puhutaan perinöllisyysneuvonnassa (Tampere: Tampere University Press, 2008). Also discussed in Carolin Ahlvik-Harju, “The Invisible Made Visible? The Ethical Significance of Befriending People with Disabilities,” Studia Theologica: Nordic Journal of Theology 68.2 (2014) 122–46.↩
Evil, Wonder, and Chance
A Reflection on Categories in Wondrously Wounded
I want to begin by saying that Wondrously Wounded is a remarkable book. As will be evident in what follows, I do not always agree with the argument; but even where I disagreed, the book challenged me to think through my disagreements as few others have. The result was that Wondrously Wounded took me rather longer to read than I had anticipated, not because it was either boring or clumsily written, but precisely because the combination of energy and clarity with which the argument is developed meant I was forever stopping to respond, reread, and try to respond again. However one is inclined to assess the substance of Brian’s argument, I cannot imagine anyone working in the area of disability theology in particular or, for that matter, theological anthropology and ethics more broadly who could possibly ignore what he has to say. It is a major achievement.
In this response I am going to focus on an area where I am unsure on the degree to which Brian and I are actually in disagreement, in the hope that the relatively short space in which I have to raise my concerns (and Brian to answer them!) is especially suited to matters of clarification. My uncertainty is connected with the term that stands at the centre of the book’s argument: wonder. Brian draws it initially from Augustine, but goes on to develop it richly to limn a whole way of approaching our engagement with the world that goes far beyond (even while it remains firmly tied to) the experience of anomalous births. The crux of my uncertainty is easily stated. On the one hand, I think he is exactly right to use the category of “wonder” to problematise the categorisation of the birth of children like his son Adam as a manifestation of “natural evil.” I was especially sympathetic to this move, because (as I have written elsewhere) I find the whole category of “natural evil” deeply problematic, on the grounds that attaching the label “evil” to happenings that do not have an identifiable moral agent (i.e., a created “I,” not simply a created cause) seems to me to create serious issues of equivocation.1 If evil is defined as that which contravenes God’s will—and which thus should not be—then it seems to me wisely reserved for “moral evil”; that is, instances where personal agency is in play. When applied to “natural” phenomena, the tag “evil” seems to me to presume far too much about what we know should or should not exist—just the sort of presumption which, as Brian notes (in consonance with theologians of disability more broadly), has had the catastrophic effect of viewing “disabled” conditions as “problems” that demand a “cure.”
At the same time, however (and this is the “other hand” of my query to Brian), the claim that a happening in the created order, whether a hurricane or a genetically anomalous birth, is not evil does not entail that it should therefore be declared good. I need to emphasise that in saying this I do not in any way mean to suggest that a human (or, indeed, any) life that comes to be is in itself (viz., as indubitably created) anything other than good. That would flatly contradict the divine judgment reported on Genesis 1. But there is a distinction to be drawn between declaring a creature good qua creature on the one hand, and the endorsement of Pope’s, “Whatever is, is right,” on the other. That a child born with, say, Tay-Sachs disease is good is for Christians beyond dispute; that it is good for a child to be born with this condition is a different question altogether—and it is here that my query about the use of “wonder” arises.2
“Wonder” is a word with a range of connotations, and my worry is that Brian’s use of it seems at times to tend toward stressing its positive connotations in ways that goes beyond what is theologically prudent: to put it the very concrete terms of the book, Brian’s invocation of wonder sometimes seems to imply not simply that Adam is good (a point which, again, I take to be beyond question), but that Adam-having-Down-syndrome is good. Again, I speak of a tendency: Brian nowhere (at least as far as I can see) makes this equation explicitly. Of course, separating Adam from a condition that so profoundly affects the particular shape of his humanity is difficult. Brian cites theologian Frances Young’s assertion that it would be folly to hope her own severely disabled son Arthur would be “cured” in heaven, because his disability is just too closely bound up with his identity for any such “cured” individual to be meaningfully identified as Arthur. Brian elsewhere in the book raises important questions about the vision of resurrected existence that lies behind such thought experiments (and I find his explorations on this front some of the most incisive in the book); but whatever one makes of the relationship between Adam’s identity and his earthly intellectual capacities, the fact that Brian and Stephanie had no problems with efforts to “cure” the heart problems that are part of Adam’s condition suggests that not all aspects of his condition are to be interpreted as wondrous in a positive sense.
And this brings me to a second set of connotations of the term “wonder” that to me are not at all problematic when applied to anomalous births: viz., wonder as a sharp, even disorienting prompt for reflection among Christians on how to be a neighbour. Here a “wonder” is less something intrinsically good (or bad), than simply strange. Indeed, in this context Brian speaks of Christians like Adam having “strange vocations,” which I think gets it just about right.
My concerns may thus be summarised as follows: I think the category of wonder is usefully deployed to challenge the interpretation of anomalous births as instances of (natural) evil. I am, by contrast, less comfortable with the possible implication that “wonder” implies the opposite: that such births are good (as opposed to merely unusual). My discomfort with the latter implication is that such diagnoses of good (like the contrasting diagnosis of evil) reads too much into a particular created state of affairs. The problem with viewing any “natural” occurrence (and I realise that this designation raises a host of problems in itself, but I hope that my basic intention here is clear) as good or evil is simply that it presumes to say too much about what God intends for the world. Except where God is confessed to be speaking or acting directly (e.g., miracles, sacraments, Scripture, the incarnation), the relationship between creaturely happenings and divine will seem to me just too obscure to be able to make such judgments. Here I find the old Scholastic category of divine permission the least bad option, insofar as it is used to affirm that no creaturely occurrence is outside the sovereignty of God’s will (since to argue that would be to pose a limit to God’s capacity to fulfil the promise of salvation in relation to it) without claiming that it is directly willed by God.
Rather than labelling “natural” events as either evil or good (and thus as directly reflecting God’s will in some more or less discernible way), I think it is best to view them precisely as occasions, “neutral” in themselves, for the discernment of God’s will. Thus, taking it as fixed that every human life, whatever its genetic complement or perceived disability, is to be confessed as good in itself, the question to be asked in the face of an anomalous birth is how that goodness is to be fostered given the circumstances that attend this life in particular. Similar questions occur in the face of various sorts of matters that afflict human life at various stages, including “accidents” like cancer or other forms of later-onset debility (many of which, of course, have a genetic component). In addressing such conditions, the problem is not, I think, with the idea of “cure” as such, but rather with the imposition of cure as an externally imposed “solution” to an externally perceived “problem,” rather than an approach that takes seriously the theological principle that the telos of a particular life is a matter of discernment that cannot be determined apart from the active participation of the person whose life it is.
Early on in the book, Brian posits three alternative ways of viewing an anomalous birth: “‘an unfortunate roll of the dice,’ a sign of the displeasure of God . . . , or a work of God that might plausibly be understood to whisper, somehow, of God’s good pleasure in every human life and will to offer abundant life to all” (41); the upshot of the book is that the third of these is to be preferred. Later on, he returns to the problem of classification, arguing against the terming of anomalous births as “accidents” on the grounds that such labelling implies that such events are inherently devoid of meaning (see 149). As evident from my word choice in the previous paragraph, I see no problem in describing anomalous births as “accidents,” precisely because I do not see such terminology as inconsistent with their being regarded as wondrous. More sharply, I am inclined to think that such events are devoid of any readily discernible meaning in and of themselves; rather, the meaning of the lives that come to be through such births emerges—as is true with any life—as the person so born and the community around her seek to determine what meaning God intends for this life going forward.
Now, Brian sketches out the need for just this sort of discernment in the context of various sorts of disability when he writes that it is important to pray for healing, but also to be attentive to “which healing is prayed for, and who is taken to need it” (169). At the same time, the risk of giving too much of a positive valence to wonder is visible in his attempt to replace theodical categories in relating to anomalous births with that of annunciation (194). Again, it seems to me to overreach to suggest that God is directly communicating anything to the world or the church in any birth, anomalous or otherwise. What God is doing with every birth is challenging the world in general and the church in particular to recognise in a very concrete way how this life is intended as a blessing both for the one living it and for the community of which she is a part, and this becomes more evident when the circumstances of a birth make it impossible for the vocational discernment to proceed by inertia along more or less standardised pathways.
This last sentence, of course, is itself precisely the thesis of Wondrously Wounded, and to the extent that this message has the impact it deserves, my reservations about terminology are at best a minor footnote.
Ian A. McFarland, “The Problem with Evil,” Theology Today 74.4 (January 2018) 321–39.↩
Another way of making this point is to say that Ruth Page’s insistence on “Teleology now!” as a means of affirming the inherent worth of every creature in its present existence before God needs to be held in tension with the recognition that any notion of creaturely flourishing involves at least some tentative projection of a future teleology that is distinct from present states. See Ruth Page, God and the Web of Creation (London: SCM Press, 1996), 63; cf. Oliver O’Donovan, Resurrection and the Moral Order: An Outline for Evangelical Ethics (Grand Rapids: Eerdmans, 1986), 35.↩
God’s Disabled Work
It is not possible for me to have read dispassionately or disinterestedly Brian Brock’s Wonderfully Wounded, nor to offer any kind of impersonal response. I have come away from the book with a depth of gratitude I did not anticipate because Brock has given me conceptual and linguistic tools to make greater theological sense of my life. For the last several years, disability has so pervaded my daily experience that I sometimes forget that my life is shaped around it. A little less than a decade ago, it became clear that my nephew, Ryan, is on the autism spectrum. Around that same time, I became romantically involved with, and soon married, Edelweiss—she goes by Evie—who has been a type 1 diabetic since she was twelve years old.
When my sister learned she was pregnant with Ryan, her marriage was in the early stages of disintegration, and she was not planning to have a child. Her emotional resistance to what was happening to her, that a new life was growing within her and demanding new choices of her, was alarming if also understandable, given her own personal struggles. Despite the fact that the pregnancy was unplanned, she never considered abortion. After Ryan was born, my sister met the physical demands of the child. Her work of motherhood was not, in the first years, carried out joyfully, nor resentfully, nor with whatever one might classify as instinctive maternal care. And as if to add insult to injury, it was not long before Ryan exhibited peculiar behaviors and fell short of developmental milestones. He would fixate on certain patterns and colors and objects; certain normal sensations or sounds were intolerable to him; he would perform repetitive movements and sounds for long durations—a behavior I’d observed many times in Brock’s son Adam when I used to worship at the same church in Aberdeen. I remember the unexplainable fear I felt, and how I expressed it in anger and denial, when my mother said to me, “I think Ryan has autism.” I wanted for Ryan to be normal, and I did not want to face what had just shown itself in me—the fear that Ryan was somehow less than fully human, or incapable of a fully human life, or somehow needed to be loved despite the emerging facts about him.
It was around this same time that Evie entered my life. One day, as things became more serious, she said she had something to tell me about herself: “I’m a diabetic.” I knew embarrassingly little about diabetes at the time, other than that I had a diabetic uncle, and that there were commercials for diabetes medication on TV that mentioned insulin and blood sugar. “I don’t have that kind of diabetes,” she said. “I have the other kind.”
When she was twelve years old, Evie’s pancreas stopped producing the hormone insulin, which the body requires to regulate blood glucose, and it also stopped producing glucagon, which the body uses to convert glycogen into glucose when blood glucose levels are too low. Without insulin, chronic hyperglycemia eventually damages nerves and blood vessels, leading to eventual blindness, kidney failure, and sometimes the need for amputations. Without glucagon, hypoglycemia leads to confusion, eventual unconsciousness, coma, and then death.
I did not at first grasp what Evie was doing by telling me about her condition. Naively, I asked her why I would care that she was a diabetic. It’s a big deal, she explained. Other men had ended relationships with her because of it, she explained. There were a number of medical risks. She’d likely not live into old age, nor die comfortably. She explained that I needed to understand what life with her entailed.
Of course, what she was trying to explain to me in advance of my commitment to her, presumably so that I could make an informed decision about my future and her place in it, was not understandable outside of the bonds of that commitment. Tillich was right about this much, that calculating love is not love.1 And part of the reason that this claim is true is that the true cost of love is knowable only within the bond of that love. I could not have understood in advance of marriage what it means to have one’s life patterned around glucometers and lancets and juice boxes in case of emergency, the debt incurred because of medical expenses, rationed vials of insulin, the sorrow or joy after a visit to the endocrinologist, and, of course, the pluriform anxiety and medical-industry gatekeeping that has accompanied our as yet unsuccessful efforts to conceive our own children. Nor could I have understood the gift that these costs have constituted: that this particular person, this particular marriage, is the school in which I have been freed each day to learn to love my neighbor. This love is not neatly divisible along the lines of a “two-tier” morality, the mandatory and the “supererogative.” The love I learn in a life shaped around disability requires, as Brock indicates, conversion (103–5). Such conversion is constant.
One question lingers. The possibility of this love, and the endurance of this spontaneous conversion to love the neighbor, is not a given. In Brock’s critique of medical ethics, and, in particular, his critique of two-tier morality, he draws on the Lord’s parable of the Good Samaritan. A counter-parable, if one is willing entertain the notion, is that of the sower. In Matthew’s Gospel, Jesus explains the meaning of the parable, saying that the seed is the “word of the kingdom” (13:19) that is miscellaneously received; some do not understand it, others receive it but their faith is choked out by the cares of the world and the lure of wealth, and yet others receive it joyfully, but fall away when trouble arises.
A modern, and not unrelated account of the word being received, taking root, and then withering is that of Emmanuel Carrère, narrated in his masterful book The Kingdom. Carrère speaks of his conversion to the Christian faith, his enthusiastic fervor—working meticulously on a commentary on John’s Gospel, attending daily Mass—his loss of faith, and his attempts to reconcile the man he is now with the Christian man he once was. His story is bracketed by encounters with intellectual disability. It is not only the persistence and prayers of his devout godmother, but finally the experience of glimpsing the Lord’s kingdom in the face of an altar boy with Down syndrome that opens the young Carrère’s heart to receive the gospel. Over time, the demands Jesus makes of his disciples, which Carrère understands are not hyperbolic or within the mainstream of commonsense morality, show themselves to be untenable. Those who allege to do so have found some way to soften these demands, or to interpret distortedly. The truth or falsity of the Christian faith, Carrère comes to see, is whether or not the way of following Jesus is in fact a way of life, a way that can be lived. And Carrère concludes that it cannot. None can live this way of Jesus. The mature man, enough years removed from his “Christian phase” to have forgotten that he had one at all, seeks out a way to reconcile who he was to who he has become. He visits the L’Arche community, where he participates in Christian worship with the intellectually disabled. He finds himself in tears, and he is left wondering what to make of the hopes and prayers of his younger self.
Brock, at this juncture, would surely invoke Luther, and surprise Carrère with Luther’s agreement with his assessment of Christ’s commands: they cannot be kept. Carrère encounters spontaneous Christian love situated within the body of Christ—an institution that cannot enforce such love but can only maintain conditions for its possibility. In this encounter, Carrère sees the kingdom that Christ promises, but he is unable, beyond this encounter, to see his way into this kingdom. He looks in from the gate. Is it enough to concede the point that Christ’s demands cannot be kept, but that it is precisely such failure and the grace which exceeds it that frees us to love the neighbor?
Perhaps my unease comes down to a basic Catholic/Protestant difference—I am aware that I occupy somewhat strange moral-theological territory as an Anglican—or perhaps it is because of the influence of black American Christianity, and black liberation theology in particular, but it is this fundamental issue of the practicability of the Christian faith that troubles me. Brock is, I think, clearly right when he argues that medical ethics, traditionally conceived, leaves physicians (and the rest of us) morally debilitated and unable to act outside the bounds of what is already determined institutionally. Yet I believe that the freedom to love the neighbor, and institutional structures that make such love possible, requires confidence that such love of neighbor accords with reality. One must listen, not just to a Carrère, but to his strange counterpart, Michel Houellebecq, whose work, if nothing else, is consistently illustrative of the moral and practical untenability of any construal of human life that sees the life of the unborn or the disabled or the vulnerable as anything less than precious. His stories are, as Louis Betty has shown, the horror of human life without God, that is, human life lived as though we are something other than the image of God. The greater moment of truth is, I think, not when one is confronted by the impossibility of Christ’s commands, but the revelation that the alternative demands are far more exacting—demonically so.
This is perhaps Brock’s point, if in a slightly different theological key, in deconstructing theologically the concept of disability, arguing that the experience of a person as disabled already constitutes a mis-recognition of that person in God’s economy, but that, graciously, such mis-recognition occasions a new vocation for the disabled, who become instruments of “Jesus Christ’s assault on the Western status quo” (197). As Brock says, one true God has spoken to us creatures his Name and his Torah, and so made us a people who may give and receive ourselves from one another. This claim is no theological nicety. I receive myself from my wife, and this reception is not despite the state of her pancreas, but in a real sense because of it. Similarly, I am Uncle Matt in the particular way that I am because of the particular child Ryan is. These relationships have been Jesus Christ’s assault on me, at least. And to suffer such an assault is to discover the kind of political agency that Brock describes: the recognition of others as the gifts that they are, and the freedom to love them and to be loved by them.
The final point is what is most disorienting and most haunting. I am not accustomed to thinking of myself primarily as the object of the political agency of others, not least those who are disabled, but rather I think of myself generally as a political subject, perhaps among other subjects. It is this fixation on my own agency that is the great impediment to communion, that is, the redeemed community, with those whom I experience as disabled. Yet it is here where the Lord shows himself; that he is the principal political agent, most freely and radically available in those in whom we expect not to find agency: the man on the cross, the child screaming in the restaurant, my wife’s tears.
Paul Tillich, The New Being, trans. M. A. Stenger (University of Nebraska Press, 2005), 47.↩
The Hour of Glory
Putting Wonder at the Heart of Theodicy
This is an impressive addition to the literature on disability theology, though perhaps the author would not be entirely happy with that characterisation. For he is particularly conscious of the hazards of language when it comes to reflection on these realities, not to mention the perils of binary “us-and-them” distinctions, on the one hand, and on the other, over easy identification. Human solidarity in diversity is central to the argument, and the basis of extended critique of the sociocultural world of Western liberal democracies in general and the medical establishment in particular, especially the values inherent, yet barely overt, in responses to the challenges posed by anomalous births and nonstandard social behaviour. Though personal experience is the context from which such engagement takes place, both critique and reflection are fundamentally informed by historical theology and biblical study. The wealth of further conversation in the footnotes refines much of the argument and engages with the available, pertinent scholarship—altogether, as I said, an impressive addition to a growing body of literature.
For a reader in a similar, but by no means the same, boat this is a deeply humbling book, with a theological maturity which in my experience took decades even to glimpse. Yet there are striking commonalities in the insights which have emerged from our somewhat parallel pilgrimages, and for both it has been a journey—indeed, Brock speaks of a conversion experience. The nub of it is about discovering the giftedness of the unexpectedly different member of the family, and the imperative of doxology.
The opening section of the book highlights this through historical study, and illuminates the title, Wondrously Wounded: this brilliantly captures what this reader would describe as the book’s fundamental aim, namely, to shift perspective from the tragic to the wondrous. An exploration of Augustine’s response to anomalous births enables a reclamation of the sense that an event out of the ordinary is a wonder to be marvelled at—these are not “signs of the brokenness of creation” but rather pointers to the “unbelievable diversity of the created realm” and occasions for “God to speak through surprising human differences” (29). Thus the notion that, rather than deficits, some have “strange vocations,” arises not just out of hard-won experience, but from a willingness to reexamine ideas that are distinctly premodern. Augustine is followed by study of Luther, again with emphasis on God’s Word generating wonders in everyday life, on “the tangibility” of “personal acts of divine mercy” in “the lived spaces of daily life” (49). To reclaim “the revelatory capacity of people labelled disabled” is to reappropriate such “traditions of mercy and gratuity” (53, 55), and to expose the modern perceptual frame situating anomalous births. Because in modern secularity wonders have ceased, it is almost inevitable that people who have been labelled disabled will feel condemned to having their whole lives framed by a narrative in which the biological or historical lottery has dealt them a losing hand” (53).
This sense of wonder, of gratitude and doxology, is the liberating stance which permeates subsequent discussion as a principle, challenging both the norms of modern medicine and the categories within which disability theology and politics have come to be analysed—not to mention the church’s traditional “charity model” and its more recent well-meaning search for “inclusivity.” The culminating study of 1 Corinthians 12 reinforces the point: each member has a distinctive contribution to make to the building up of the body of Christ. Here is one of our parallel journeys by different routes: the revised version of Face to Face produced some thirty years on is entitled, Arthur’s Call—I had moved from discovering my own vocation through Arthur to articulating his. Someone once said to me, “Arthur’s presence in church is gospel.” Overall, however, Brock would push us beyond even this to acknowledging the complementarity of diverse vocations in the solidarity of the body of Christ. The giftedness of the unexpected givers lies not only in our thanksgiving for them as wondrous gift to us, but in our receiving of their gifts as positive contributions to the building up of the community.
There are many other resonances: alongside reference to 1 Corinthians 12 we both pick up the upside-down world of the Beatitudes; in our writings we both recognise human creatureliness and vulnerability, as well as the essential solidarity of humankind and those fundamental values which Paul calls the fruits of the Spirit. So why was my initial reaction a sense of being humbled—even a feeling of defensiveness? To answer that question is, I admit, to make this an all-too-personal reflection, but it is also to raise certain topics for discussion—which I take to be the purpose of this exercise, as distinct from writing a review of the book. I identify three areas to consider, and I will address them as they emerged for me in reading the book.
The initial challenge to me personally came with the preface: Brock’s nuanced discussion of how far the story of his son, Adam, should figure. He eschews telling Adam’s story as “a way of proving his credentials to speak on this topic” (xiii)—for him it is “a matter of the ethics of discourse to forego the deployment of stories” as a guarantee of his “credible authority on this topic.” Stories are only to be utilised to enhance the reader’s understanding of the theoretical issues at stake—his aim is the “theological hermeneutics of experience.” But there is more at stake—the fear of untruth, of following narrative conventions which do not fit Adam’s experience: “he may inhabit the world in something like a perpetual present tense not easily fit into conventional narrative forms” (xiii). My first reading of this ethical discussion around telling Adam’s story did, I confess, put me on the defensive. After all, Arthur’s story has been in the public domain in various forms since the early ’80s—at least insofar as there is a story to be told. That point was also an issue for me: invited to tell Arthur’s story my immediate response was that there was little story to tell. It became, necessarily, my story, though he was inseparably at the heart of it. Brock’s discussion sharply reminded me of an occasion years ago when the local theological college invited me to preach at the chapel service at the end of a day focusing on disability. When I suggested Arthur should be present, the reaction was highly sensitive: I was effectively accused of using him as a visual aid. I was quite taken aback and forced to examine my own motives—was there an element of feeling that people should confront the reality of what they had been talking about all day? But the more I thought about it, the more I realised that Arthur’s presence was essential to what I had to say about the body of Christ. In the end, I guess, Brock and I have reached the same position: that the story is “ours” rather than “his,” and whether through an attempt at narrative, or through a self-consciously more theoretical approach, we have both been engaged in thinking theologically about the realities of the everyday life we have been invited to embrace, in all its ambiguity, and with its capacity to evoke wonder and love, but also to challenge our thinking, magnify loss and, indeed, deepen distress. Perhaps Brock underestimates the pastoral importance of personal sharing—of offering the human touch, despite its potential journalistic hazards.
A major part of this book addresses issues of medical ethics—hardly surprising given the professional expertise of its author. It is here that stories about Adam and the family’s interactions with health professionals are perhaps most evident. It is here that I found humbling the theological assurance implicit in the ethical stance adopted, particularly in relation to genetic and prenatal testing. I confess that my personal faith was under profound pressure for over a decade, and Arthur’s birth was a powerful reinforcement of already challenging questions. What made this read a humbling experience was the realisation that I had shared many of the attitudes to which Brock directs his critique: Arthur’s situation, even that of the family, did seem tragic; to understand what it meant for the future was a desperate need which the experts could not satisfy; a miracle was craved yet not believed plausible—Brock quotes me on that very point (172). In retrospect I can see how utterly lacking was any trust in God, and I’m glad that circumstances meant I never had to make the kind of choices being discussed in these sections of the book. I fully agree that presenting prospective parents with such choices both reinforces negative attitudes and displaces onto their individual shoulders responsibility for the irrational boundaries between viable and unviable human life determined by the law for society. Indeed, discussions of both abortion and euthanasia contrive to situate ethical burdens on individuals rather than encouraging society to embrace the demands of human solidarity. I’m humbled by a faith which can offer such confident challenge to the common sense of our culture, but I wonder how effective for change it can be when religion and theology themselves are so profoundly marginalised.
Which brings me to the issue which made me feel most defensive. Let me quote:
Yes—the “why?” questions dominated Face to Face, though subsequent work not only indicates a shift from my vocation to his vocation, but also from a preoccupation with theodicy to affirming that I have had privileged access to the deepest truths of Christianity. So Arthur is no longer trapped, as I hope some of my earlier remarks here go to show. As someone once said to me, “Arthur is your pathway to God.” But having said all that I do need to raise again those fundamental issues about how God relates to the world. What does Brock understand by his repeated references to the “fallen world”? How does he conceive God’s agency?
Arthur’s condition was not caused by an accident at birth; placental insufficiency deprived him of nourishment and oxygen in the womb, so though a full-term baby he had premature weight, a small head and an underdeveloped brain. For me it was a liberation to be able to accept this as an accident in an accident-prone world—it had seemed utter failure, the failure of my body, more importantly divine failure in the very act of creation. It was me who was trapped, trapped in questions about the very existence, let alone the goodness or competence, of any almighty Creator God. So, indeed, I shared the Zeitgeist. It is precisely because of the cultural assumptions which pervade our essentially post-Christian Western world that the cultural critique so powerfully offered in this book needs to be founded on a more explicit account of how God relates to the “gonewrongness” of the world. (I prefer to use a less traditional term than “fallenness,” for it is hard to see how “sin” had anything to do with the “failure” of Arthur’s development, or indeed with the kind of genetic mutations thrown up by evolution and lying at the heart of this book’s theological hermeneutics.) The problem of theodicy surely lies at the root of those shifts in “common sense” which have undermined Christianity since the Enlightenment, and for that very reason remain on the table.
As some readers may know, my own approach to these philosophically intractable problems has been through reflection on the cross and what that means for the way in which the Christian tradition understands God’s ways with the world. Yes—that does mean encompassing the challenges of Arthur’s condition within the general topic of suffering and loss, but after more than fifty years I have to say that that cannot be regarded as other than appropriate. Yes—there is so much to be grateful for: he is a gift and a wonder. But his recurring periods of distress and severe agitation continue to be a reality, a reality painful and difficult to deal with in practical, emotional, and spiritual terms. Yet, God in Christ has entered the depths of darkness on the cross and transformed it into glory, this being the culmination of the long biblical story of God’s creative and faithful engagement with the world he has let be other than Godself. Here I can only leave it there . . .
9.30.20 | Brian Brock
Response to Frances Young
Given the personal nature of this discussion, the word limit has made it especially difficult to offer the nuanced responses these impressive and generous responses deserve. Unfortunately, my responses will have to focus on the main conceptual questions and criticisms raised by my respondents.
I find Frances Young’s response powerfully moving, since Young knows firsthand the life experiences we both are theologically processing. Young succinctly states the central aim of my book: to discover the gift that is the diversity of the human family through doxological perception. I want people to ask: Why should you, or I, praise God because you exist—no matter who you are? Is everyone fearfully and wonderfully made?
Young finally came to occupy a very similar position in relation to her son Arthur, though I still squirm at the continuing presence in Arthur’s Call of terms like “tragic,” “bad luck,” “series of losses,” and “damaged persons” to describe Arthur’s life and the lives of others like him.
Even in this later work Young positions Arthur’s “message” as an articulate lack: “Arthur’s limitations enable us to recognize our own.”1 Arthur’s vocation is to confront dominant cultural values in his inability to conform to them. The more particular and positive vocational revealing I offer in Wondrously Wounded leads me to see hints in Arthur’s Call that Arthur’s vocation may well have gone beyond pregnant inability, such as when Young observes that both she and a Christian carer had at times experienced Arthur to be positively and carefully responsive to moments of their emotional need.2
I want to read such moments—without any caveats—as signs that every member of Christ’s body can be expected to serve the Spirit’s work of delivering life-giving gifts to the collective body of Christ. Against the “dependent rational animals” anthropology, I want to affirm that it is not lack that some people bring into the church, but positive and concrete gifts from the Spirit that upbuild the body of believers in particular and personally specific acts of service.
Young wonders if I “underestimate the pastoral importance of personal sharing.” My wife, Stephanie, observed while reading Face to Face recently that she wished she had read it early in Adam’s life, powerfully corroborating Young’s point about the pastoral comfort that can come with just “telling one’s story.”
What Stephanie found helpful in particular were Young’s account of being entrapped in worries that her behavior during her pregnancy had somehow contributed to Arthur’s condition. I am mortified by my sloppy misreading of the etiology of Arthur’s condition Young highlights in her response. The combination of Stephanie’s resonance with Young’s “pregnancy guilt” and my misreading of the reasons for it highlights the deeper problem of talking well about congenital disability: pregnancy is an ineradicably gendered experience. I know this in my head, but not in my body. (I return to this theme in my response to Carolin Ahlvik-Harju.)
My personal resistance to simply retelling my own memories grows from a healthy suspicion that I may hear and value some experiences (like my own) over other experiences (more distant from my own), pregnancy most obviously. By attempting to let God’s story about human life as recounted in scripture teach me what true human life looks like, I am attempting to allow the Spirit slowly to release me from the traps laid by my experience as a white man, with all the privileges and gaps in perception that status entails.3
My approach to these themes also reflects a generational difference. Disability theology didn’t exist as an academic discourse when Young wrote Face to Face. Its development in subsequent decades came to absorb the convention of modern identity discourses that demand people “show their pass” in order to prove they have the authority to join the conversation. This seems to me to bar too many sensitive and politically important contributors from the discussion. At the same time, that I made Young feel defensive is both regrettable and almost impossible to avoid once we have both so tightly tied our stories together with our theological positions. (I return to this problematic in my response to Miguel Romero.)
Young feels the cross is underrepresented in Wondrously Wounded. I think we link creation and the cross in very different ways. I assume that Jesus was capable of suffering the cross only because he was first born. Because the world is “gone wrong,” we killed him. How to defuse these killing dynamics is the focus of my treatment of sin, the cross, and disability, which I position as less about what is “out there” metaphysically rather than “in us” as beings enmeshed in sinful drives and cultural practices.
I therefore continue to hold the term “natural evil” to be a category mistake. Young says she rejected this position when embracing the tradition of theodical thinking of John Hick and Donald McKinnon.4 I have never found such rational engagements with the problem of evil to be sufficiently proportioned to the human heart and the pastoral form disability questions present themselves. This is no sentimentalism, which Young tends to present as the alternative to the more hardheaded admission that disability is a “cruel and unnecessary” evil, for the “2 percent of humanity born with some disability or other, denying them the possibility of the fulness of life.”5
I cannot grant that anyone God has created is denied the possibility of fulness of life. Nor has “science” persuaded me that Adam, with his extra 21st chromosome, is an “accident”—at least no more than the rest of us. The notion that evolution “throws” anything “up” is not the language of practicing scientists but of its popular representation.6 (I return to this question in response to Ian McFarland.)
In response to Young’s third question, I assumed that the many painful scenes of life with Adam I relate in the book would be connected by readers with suffering of Christ in the world into which Christians are inevitably drawn in this life. It was precisely this linkage of pain and unexpected divine drawing near that the two words of my title, wondrous and wounded highlight.
I would reformulate Young’s question about how Christians are to understand God’s action in the existence of disability as: How does one live through and publicly narrate the suffering of disability as a participation in Christ’s cross? Adam’s life is not the locus of my own heaviest crosses. His life places constrictions on mine, but not ones that obscure the gifts that continually flow through him. Wondrously Wounded is my attempt to let people get up close to those luminous gifts of the Spirit. What it is not in my power to claim is that my descriptions of Adam’s witness will be “effective for change . . . when religion and theology are so profoundly marginalized.” Only if God decides to use them will anyone be changed.
Frances Young, Arthur’s Call: A Journey of Faith in the Face of Severe Learning Disability (London: SPCK, 2014), 154.↩
Young, Arthur’s Call, 132.↩
I was forced to confront these issues directly when working on Brian Brock and Stanley Hauerwas, Beginnings: Interrogating Hauerwas, ed. Kevin Hargaden (London: Continuum, 2016), cf. 25–37, 184–93.↩
Young recounts this period in Arthur’s Call, 29–33, and also in Face to Face: A Narrative Essay in the Theology of Suffering (Edinburgh: T. & T. Clark, 1990), 54–56.↩
Arthur’s Call, 32.↩
Brian Brock, Walther Doerfler, and Hans Ulrich, “Genetics, Conversation and Conversion: A Discourse at the Interface of Molecular Biology and Christian Ethics,” in Theology, Disability and the New Genetics: Why Science Needs the Church, ed. John Swinton and Brian Brock (London: T. & T. Clark, 2007), 146–60.↩