Disability's Challenge to Theology

Devan Stahl

Description

This book uses insights from disability studies to understand in a deeper way the ethical implications that genetic technologies pose for Christian thought.

Theologians have been debating genetic engineering for decades, but what has been missing from many theological debates is a deep concern for persons with genetic disabilities. In this ambitious and stimulating book, Devan Stahl argues that engagement with metaphysics and a theology of nature is crucial for Christians to evaluate both genetic science and the moral use of genetic technologies, such as human genetic engineering, gene therapy, genetic screenings, preimplantation genetic diagnosis, and gene editing. Using theological notions of creation ex nihilo and natural law alongside insights from disability studies, the book seeks to recast the debate concerning genetic well-being. Following the work of Stanley Hauerwas, Stahl proposes the church as the locus for reimagining disability in a way that will significantly influence the debates concerning genetic therapies.

Stahl’s project in “genethics” proceeds with an acute awareness of her own liberal Protestant tradition’s early embrace of the eugenics movement in the name of scientific and medical advancement, and it constructively engages the Catholic tradition’s metaphysical approach to questions in bioethics to surpass limitations to Protestant thinking on natural law. Christianity has all too frequently been complicit in excluding, degrading, and marginalizing people with disabilities, but the new Christian metaphysics developed here by way of disability perspectives provides normative, theological guidance on the use of genetic technologies today. As Stahl shows in her study, only by heeding the voices of people with disabilities can Christians remain faithful to the call to find Christ in “the least of these” and from there draw close to God. This book will be of interest to scholars in Christian ethics, bioethics, moral theology, and practical theology.

We know who we are as human persons only in light of God’s action toward humanity. In opposition to contemporary secular debates about personhood, a Christian ontology of the human person points us toward the value of life beyond its capacity or abilities. From the creation narrative, we know the lives of all human beings are gifts, which constitutes the donative nature of the human being. Through the incarnation we can recognize human nature (in all its fragility and limitation) is good, even though our sinfulness directs our wills away from God. To despise our nature would be to despise what God has given and the very nature to which God has promised ultimate communion through Christ’s redeeming action. Finally, Christian eschatology leads us toward communal care as a witness of God’s Kingdom in the here and now. Living as witnesses to the Kingdom means recognizing all human persons are worthy of dignity and kinship. As sinful human beings, we tend to pervert our kinship with others and the earth. In response, the Church must work to represent God’s Kingdom to the world by first relinquishing power and control over our fate and turn towards being with God and others as its primary task.

By welcoming and including all persons into their communities, Christian churches have the opportunity to declare something vital about the worth of human life in its material and nonmaterial aspects, as well as in its actuality and potentiality. Against those who would situate God and the “supernatural” outside of mechanical human life, Christians know they are ontologically determined by a God who took on human form in order to be with humanity in its very nature. The church must assert our genes are not the essence or defining feature of who we are, and even if genes contribute to what we are, we ought not reduce all human whatness to genetics. We are finite material beings, but we are also creatures of God, which means we are more than mere material, and our DNA is no more sacred than the whole of human life. Christian churches have an opportunity to declare humans are more than molecules, more than their particular capacities and deficiencies. Our genes are not the key to who we are: Christ is.

Within our current culture, genetic engineering presents itself as a double-edged sword, promising to relieve the suffering of many while simultaneously obstructing deeper conversations about the complexity surrounding genetic diseases and disabilities within human life. The geneticization of all physical difference may hinder our acceptance of persons with phenotypic variation. By focusing on curing abnormality, Christians often neglect the hospitable and patient care that is required of them. All too often, we deploy our techno-medico projects upon the bodies of those we assume suffer as a result of our cultural configurations and assumptions about personhood. If we allow ourselves to be carried away with the achievements of genetic testing and medicine, our good intentions may become weapons against persons with genetic variation (or their parents) when they consider options within health care institutions.

Acknowledgements

Introduction

1. Science, Religion, and the Ideal Eugenic Man

2. Theological Influences on the Scientific Revolution

3. The Metaphysics and Theology of Genetic Medicine

4. Natural Theology and Genetic Ontology

5. Disability and Personhood

6. The Limits of Natural Law in Christian Genetics

7. Practical, Embodied Wisdom

8. Disability Inclusion and Virtue within the Church

Conclusion

Sujets

• Philosophie
• Éthique et morale
• Religion
• Christianisme
• People with Disabilities
• Christian Theology
• PHILOSOPHY
• Philosophie et théologie
• Protestantism
• Theology
• Ethics
• Christianity

Informations

• Publié par: University of Notre Dame Press
• Date de parution: 15 août 2022
• Nombre de lectures: 0
• EAN13: 9780268202965
• Langue: English

Extrait

DISABILITY’S CHALLENGE TO THEOLOGY
DISABILITY’S CHALLENGE TO THEOLOGY
Genes, Eugenics, and the Metaphysics of Modern Medicine
DEVAN STAHL
University of Notre Dame Press
Notre Dame, Indiana
Copyright © 2022 by the University of Notre Dame
Notre Dame, Indiana 46556
undpress.nd.edu
All Rights Reserved
Published in the United States of America
Library of Congress Control Number: 2022935745
ISBN: 978-0-268-20297-2 (Hardback)
ISBN: 978-0-268-20299-6 (WebPDF)
ISBN: 978-0-268-20296-5 (Epub)
This e-Book was converted from the original source file by a third-party vendor. Readers who notice any formatting, textual, or readability issues are encouraged to contact the publisher at [e-mail]
CONTENTS Preface Acknowledgments ONE Science, Religion, and the Ideal Eugenic Man TWO Theological Influences on the Scientific Revolution THREE The Metaphysics and Theology of Genetic Medicine FOUR Natural Theology and Genetic Ontology FIVE Disability and Personhood SIX The Limits of Natural Law in Christian Genetics SEVEN Practical, Embodied Wisdom EIGHT Disability Inclusion and Virtue within the Church Conclusion Notes Bibliography Index
PREFACE
After years of failing to conceive, my first pregnancy was an occasion for celebration, but it brought with it many difficult choices. Before conceiving naturally, my husband and I considered whether we should try in vitro fertilization (IVF). Many couples who struggle with infertility are presented with an array of assisted reproductive technologies, but we felt a particular urgency to our choice, because I had gone off my multiple sclerosis medication for several years during our attempts to conceive. With relapsing-remitting MS, relapses compound, and I worried that forgoing my medication for so long would have lasting implications. Having taught bioethics for many years, I was well aware of the controversies surrounding IVF, including various religious objections to the practice. Thankfully, my denomination, the Presbyterian Church (USA), carefully considered the ethical nature of IVF in its 1983 resolution “The Covenant of Life and the Caring Community.” 1 In this long and rich document, the denomination explores the nature of infertility (including the social injustices that may lead to infertility), the indignities that can accompany fertility evaluations, the stress of infertility on a marriage, the cost of fertility treatments, the difficulties of adoption, the goods of medical treatment, and the possible commodification of children. 2 The document asserts parenting as a covenant invitation that ought to be considered carefully. In its 2012 resolution “On Providing Just Access to Reproductive Health Care,” the PCUSA urges couples considering assisted reproductive treatments to be guided by “individual conscience” in consultation with “families, pastors, health-care professionals, and scientifically accurate medical information.” 3 Understanding IVF as permissible, I began to consider whether it was right for me and my husband.
We were spared the difficult choice of whether to use IVF when I unexpectedly conceived, but then a new set of questions came our way. Early on in my pregnancy, I was offered genetic testing. Because of my age and chronic illness, I had an “at-risk” pregnancy and required oversight by a specialist, who encouraged me to consider genetic screenings. A simple cell-free fetal DNA test (done through a blood draw) in my first trimester could show me signs of Down syndrome, trisomy 18, or trisomy 13, as well as increased chances for other genetic and chromosomal conditions. As a disability advocate, I could not imagine terminating a viable pregnancy because my child had (or might have) a genetic or chromosomal disability. Just as I value my own life, I would value the life of my child. Still, I considered whether it was prudent to get genetic testing when it was offered. Those same Presbyterian resolutions that guided my thinking on IVF struck me as problematic for discussing genetic technologies. In the 1983 resolution, genetic “problems” (i.e., disabilities) are described as “tragic” and “catastrophic,” children born with them as a “burden” and “damaged,” and the detection of such problems in utero as an occasion to decide whether to continue with a pregnancy. 4 Genetic counseling, screenings, and future therapies are described as implicit goods and even “a wondrous gift.” 5 The PCUSA advocates pastoral counseling for future parents and congregational support and prayer for families contemplating these difficult choices, 6 but I feared the document fell into the trap of understanding genetic disability as inherently bad.
Nearly all parents will face the choice of whether to use genetic technologies, but in my experience such choices are rarely discussed in our churches. In the medical world, genetic screenings and various genetic technologies are understood as obvious goods. Yet the animating metaphysical and ethical assumptions that guide medico-scientific research and application do not always align well with the classic Christian tradition. Christians ought to be careful not to conflate the goods of medicine with the goods of Christian life. It is all too easy to understand “health” as an ultimate good in modern society, but Christians have a different ultimate good: friendship with God. In our quest to achieve the goods of health, we may overlook other goods that God presents to us: goods that enable to us to love and accept others as gifts. By current medical standards, my chronic illness disqualifies me from the ideal healthy life, but a multitude of goods have come from my illness journey—goods I would have never achieved if I had sought health above all else. Learning to accept myself prepared me to accept others as they are, without first trying to change them. I knew this was how I was called to welcome my child as well. Within this frame, the use of genetic screenings became more complicated. Could I simultaneously accept and screen my child? Would screening help prepare me for the child I would receive, or would it give me a false sense of control? And if my child did have a disability, would accepting that child prohibit me from considering genetic interventions? My lingering questions were not addressed by my denomination’s resolutions or by most of my theological texts.
As this book shows, liberal Protestants within various denominations, including the PCUSA, have almost always been enthusiastic adopters of new biomedical technologies, even ones that have devastating consequences for persons with disabilities. As I explore in chapter 1, the liberal Protestant embrace of the American eugenics movement should give many of us pause when we consider genetic technologies today. I question many Protestants’ acceptance of biomedical progress and its general neglect of people with disabilities. The voices of persons with disabilities have been (and continue to be) marginalized in theology and bioethics, but we cannot seriously consider the appropriate use of technologies that would surveil, ameliorate, prevent, or eradicate disability without the input of persons who live with the very bodies and minds such technologies target. I do not think it is too strong a statement to say that we have entered a new era of “soft” eugenics. Our government is no longer forcing “unfit” members of society to be sterilized, but there is tremendous social pressure for parents to choose genetic screening, selective abortion, and preimplantation genetic diagnosis. In the near future, we will likely also need to consider the appropriate uses of gene editing, such as CRISPR, on human embryos.
As the PCUSA’s 1983 resolution rightly points out, genetic technologies pose deep questions about how much we can know of God through the current ordering of the natural world, the limitations of our human dominion over nature, the inability of science to qualify the goods of human life, and eschatological concerns over the future of our species. 7 This book seeks to explore these questions in detail, paying particular attention to how such questions are answered by the classic Christian tradition as well as contemporary disability theologians and scholars. By seeking out marginalized perspectives, Christians can better consider the ethical implications technologies pose.
T HEOLOGICAL G ENETHICS A SSESSED
Liberal Protestants typically consider themselves adept at evaluating and incorporating the insights of modern science into their theologies, particularly when compared to evangelical and fundamentalist Christians. Philip Clayton goes so far as to call the Christian engagement with the sciences the “birthright” of liberal Christianity. 8 Given liberal theology’s openness toward science and scientific progress, one would assume that mainline Protestant denominations would be skilled at critically evaluating the use of genetic science and the use of genetic technologies in medical care. A historical review of the twentieth century, however, reveals that liberal Protestants’ openness toward science has been much more accommodating than critical. In fact, liberal Protestants have championed some of the most dangerous scientific programs of the past century. Scholars such as Christine Rosen and Amy Laura Hall have skillfully traced how liberal Protestants came to embrace the American eugenics movement and how America’s most well-educated and elite Christians were so easily beguiled by eugenics propaganda. For various reasons, however, Roman Catholics and conservative Protestants rejected eugenics. How did liberal Protestants go so wrong?

This book argues that engagement with metaphysics and a theology of nature is crucial for Christians to evaluate genetic science as well as the moral use of genetic technologies, such as human genetic engineering, gene therapy, genetic screenings, preimplantation genetic diagnosis, and gene editing. Theologically liberal Protestants