[Editor’s Note: Brian Brock is Professor of Moral and Practical Theology at the University of Aberdeen. He is also a husband and father of three children, including Adam, who is 16, who has Down Syndrome and autism. He has written a wide range of scholarly essays on themes related to disability and is a Managing Editor of the Journal of Religion and Disability. In 2017 he was appointed to the executive committee of Archway, a charitable foundation that runs homes for special needs adults as well a respite service for children and families with special needs. Baylor University Press has recently released his first full-length monograph on the theology of disability, Wondrously Wounded: Theology, Disability, and the Body of Christ. In it he sets his own story with Adam within the historical sweep of Christian thinking about what it means to be human, drawing on the riches of traditional Christian theology to find life-giving ways forward in a modern technological west, routinely screens out lives like Adam’s. He spoke to Charles Camosy about his book.]
Camosy: In my experience, people who choose to write books with titles like Wondrously Wounded: Theology, Disability, and the Body of Christ have a story behind their choosing to take on such a project. Could you share a bit of yours?
Brock: I took a winding route into theology. As an undergraduate I studied biology with an eye on medicine. When later the idea of practicing medicine lost its attraction, I drifted laterally into bioethics as a young graduate student. Stanley Hauerwas’s early work on disability first revealed to me the importance of disability for keeping the academic discipline of bioethics honest. I didn’t see any reason to think much harder about it at that time, but I had noted its importance as a theme for anyone who wants to think well about medicine in a modern context.
During my undergraduate years I had also very much enjoyed working as a handicapped ski buddy in Colorado. None of these experiences had provoked me to think more deeply about the implications of the reality that people with disabilities are all around us. I had experiences of relationships with people with disabilities, and I had glimmers of the conceptual importance of taking these seriously, but I’d not put any more effort into following up these glimmers and hints.
That all changed pretty radically when our first child Adam was born just over 16 years ago. My wife Stephanie is a nurse, and I’d already thought quite a bit about bioethics. Both being Christians, we felt we had strong and well-informed reasons not to engage in some of the normal routine prenatal screening processes, at least the early scans that have little health benefits for mother or child. The upshot of that decision was that when Adam was born, we had no idea he was anything other than a healthy, bouncing baby boy. We were elated! But then came an infection, followed by a hospitalization, and shortly thereafter the discovery in a pretty unpleasant way that the doctors believed he had Down Syndrome. I tell that story in much more detail in chapter three of Wondrously Wounded, and many people have remarked that they found it a shocking and almost unbelievable tale of medical suspicion and coercion.
You have a chapter in the book provocatively titled “Prenatal Testing as Anti-Doxology.” Could you say something to a broader audience about your central argument here?
Quality control is an idea that should be kept away from human lives. Yet we have built a society that systematically applies the techniques of quality control to our own offspring. We have all kinds of practical and linguistic routines by which we hide this from ourselves. I summarize how this works in this video.
If we look closely at the quality-control aspect of our modern institutions of prenatal testing, it begins to look very much like we are living out an enacted refusal to admit that some human lives are worth receiving into our lives and families. Drawing on some of my earlier work, I label this enacted refusal an “anti-doxology.” My premise is that all human beings, as living and active beings, are animated by some hope, they are praising something as good, and other things as less good or even worthless. In theological terms it makes sense to call lives holy which are lived as grateful responses of praise to God for God’s works. A life that hopes in and glorifies human ingenuity and control over events and treats some of God’s works as bad is in this sense clearly enacting an anti-doxology. It is the opposite of living out praise of the Creator God.
I sometimes show a fantastic film to students here in Scotland called Home of Mephibosheth. It follows a Christian couple in China as they take in and care for abandoned disabled children. One infant with spina bifida had been abandoned as a child outside a school. When the Christian couple took him into their care, they discovered that he did not like people to look at his body. In time they figured out that in the days he had lain outside the school, each passer-by had opened up the blankets covering him to look at him. Seeing that his spine was twisted and that he would probably never walk, they turned away. In turning away, they revealed that they had only opened the blanket because they were willing to take in a child who could contribute to their lives, but not one who would not.
Raising a child with special needs indeed does often demand more investment from parents. The stark reality is, however, that our prenatal screening techniques hide from us the fact that Western cultures have become ones in which we routinely open up the warm blanket of the womb to see if we think the new one will be a burden or a benefit to us. I think we owe it to ourselves as “enlightened” and “humane” Westerners to admit the moral ugliness of such an act.
Writing in Advent, one cannot but wonder: What are we hoping for? What do we think that pregnancy will be bringing into our lives if we think it is something that needs to be controlled in this way?
This calls to mind the recent and dramatic cover story from The Atlantic titled “The Last Children of Down Syndrome.” Do you think there’s a chance Western culture can confront the reality of our practices here? It seems as if it would also mean confronting the reality of our abortion practice, and this seems like a tall order.
It is indeed a very tall order. The Atlantic article focuses on European countries like Denmark that have essentially succeeded in institutionalizing universal prenatal screening. The result was predictable—the elimination of all congenital disabilities that can be tested in the womb. The question is in part about techniques for quality controlling new life, but it also very precisely reveals which lives we count as a worthwhile and desirable. We westerners are so afraid of disability that nations where euthanasia is legal are also shockingly permissive in facilitating disabled people ending their lives. As I survey in chapter 6 of Wondrously Wounded, these same lives are also ones that the financial allocation mechanisms dominant in our medical systems formally designate as having low “quality life year” quotients throughout their life course, in effect moving such lives down the priority list for medical investment.
Most of these stories come from a European context. But Americans should not read this as proof that Europeans having less welcoming views about disability. The reality is that European governments keeping better records. Social scientists tell me that in the United States, one of the most heavily information-mined nations in the western world, no statistics are collected on the numbers of pregnancies aborted on the grounds of disability. Without a national health system, it is equally hard to determine whether most people living with disabilities are receiving adequate care, or how much their lives are shortened and complicated by the difficulty of securing adequate healthcare.
The inflammation over the last few years of a political culture in which it has become acceptable to laugh along when “losers” are mocked threatens the further marginalization of those living with disabilities. My hope is that the churches will be a locus of resistance to these moral trends, but from this side of the Atlantic, it looks like American Christians of many stripes remain captured by dreams of greatness rather than dreams of togetherness in diversity.
Politico has reported that this summer in the U.S. we had about 11,000 “excess deaths” of people with dementia when compared with the number who died in the summer of 2019. We don’t know exactly why just yet, but my sense based on my own research is that it is likely due to neglect. And that this neglect is related to ableist views about the lives of people with dementia. As someone who has studied this set of issues more than I have, what’s your view?
All that I’ve just said suggests that the crucial question is one that is very difficult to ask in the polarized political climate in the United States today: Why is it always the most vulnerable who die first and in the largest numbers in every American crisis? The disproportionate deaths of African Americans during the pandemic are every bit as disturbing as the disproportionate deaths of people with dementia.
These are not new realities, only the most recent exposure of longstanding disparities. When I responded to your first question I did not mention that my doctoral work on the ethics of technological development began from a very simple question: Why does American medicine cost so much? The answer, I discovered, is that we believe that better technology equals better medicine. My work on technology examined what the assumption that new technology will always make our lives better tells us about how we see ourselves and what we hope for. Yes, it has yielded a society ostentatiously proud of having the “best medicine in the world.” What is becoming increasingly difficult to ignore is that alongside this world class medicine are disproportionate numbers of people who have no access to medical care at all—who also happen to be in groups who have long been elbowed out of positions of economic and political power.
My doctoral work made it clear to me that American Christians, like Americans in general, are attracted to technology because it promises us the means of controlling outcomes. New technology is the mechanical version of insurance. But what do we need to secure technology and access to it? Money. Put bluntly, most vulnerable die when the chips are down in America because it takes money and political will to save them. More basically, of course, they need what any human being needs, love and human presence. As a theologian, the only question that finally matters to me is this: Why has the church in America become so bad at sharing their money and their time, in loving those pushed outside the charmed circle of middle-class wealth? Only those who take this to be a question worth asking will begin to grasp the connections between our fear of disability and our obsession with securing financial control, which scripture calls the “love of mammon”.
Very often the rubber meets the road on these issues in the fields of bioethics or clinical ethics. I don’t need to tell you that theological ideas, though welcomed by many of the founding members of these disciplines, have been marginalized in recent years. The theological ideas that you put forth in Wondrously Wounded are absolutely essential for giving a full account of the value of disabled lives, but my sense is that today they can’t get the hearing they deserve with those who hold power in bioethics and clinical ethics. Do you share that sense? And what, if anything, can we do about it?
Christians need to bring down the house of cards that is principialist biomedical ethics. In my view John H. Evans did all the work Christian bioethicists need in order to understand that though biomedical ethics has Christian roots, it has become a philosophical apparatus shorn of any substantive connection with Christian faith. In itself this devolution is neither here nor there. The pressing issue is that this ethical framework has become just another item of learning in medical schools across America, and assumed to encapsulate everything that a doctor might need to know about ethics, Christian or not. Over time it has become clear to me that this status quo in bioethics has become positively perverse in its inability to challenge the moral problems facing medicine in America today. The systematic devaluation of those with disabilities and those who care for them that has been the fruit of the Principles of Biomedical Ethics in contemporary medical practice has become so clear to me that I spend chapter five of Wondrously applying what Carolyn Ahlvik has provocatively called an “intellectual hammer” to their arguments.
