In 2002, American couple Sharon Duchesneau and Candy McCullough sparked a media firestorm when, after ten years together, they decided they wanted to become parents. They asked a friend of theirs to be a sperm donor so that Sharon could conceive their child. They had already been rejected from a local sperm bank. Their reason for being rejected was the same reason they were approaching this particular friend to be their donor: Sharon and Candy—both deaf from birth—wanted to have a deaf child.
In 2008, the UK Parliament passed a piece of legislation called the Human Fertilisation and Embryology Act. The act amended the 1990 law of the same name that created the Human Fertilisation and Embryology Authority, which regulates fertility clinics and embryonic research facilities across the country. Now legislators wanted new restrictions placed on its powers. Particularly, they wanted the HFEA to be legally prohibited from allowing IVF patients to select embryos likely to produce disabled children.
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Duchesneau and McCullough weren’t named directly in this legislative process. But Ruth Lynn Deech, a member of the House of Lords who had been chair of the HFEA in 2002, expressed her “hope that your Lordships will be pleased that the deliberate choice of an embryo that is, for example, likely to be deaf, will be prevented” in the updated law.
To many people it will seem obvious that Duchesneau and McCullough did an absurd thing, which Deech was right to condemn. Of course people shouldn’t intentionally have disabled children. Disability is a bad thing that we should aim to prevent or cure, right? Put more precisely, disability is bad for a person’s well-being, their ability to flourish. Thinkers such as Peter Singer have even said that being disabled sometimes prevents you from being a person in the first place.
And yet historically we haven’t been very good at determining when something is bad for someone. Philosopher Elizabeth Barnes points out in The Minority Body that until relatively recently, it was thought to be common sense that being a woman was worse than being a man. Comparatively speaking, being a woman was thought to be plainly bad for a person. And the dreadful recentness of American chattel slavery also underlines that we’re not always very good at recognizing when someone is a person.
Tragically and horrifically, theological reasons were mustered to justify the oppression of women and the ownership of people as property. Scriptural proof texts, soliloquies on the fallenness of humanity, and appeals to the allegedly obvious purposes of God’s creation were all trotted out to justify what we now tend to acknowledge were plainly wicked things. In fact, many would now say we have theological reasons to deny that these horrors conform with a full-orbed Christian worldview. Maybe we can say something similar about disability. Maybe disability just seems like something that must be bad for people or can rob them of their personhood.
Enter the relatively young field of disability theology. We can think of it as a “theology of” discipline, the same way that political theology could also be called a theology of politics. Political theology is a way of thinking theologically that aims to bring what we find in scripture and Christian tradition into dialogue with questions about the political. Questions like What is good governance? or Does God care about how leaders run their countries? Disability theology does the same sort of thing. It asks questions like What is disability? and What does our understanding of disability say about how we view ourselves and the kind of society we want to live in?
When asking questions like these, disability theologians tend to look to Jesus of Nazareth. Borrowing language from Anselm of Canterbury, Jesus is the God-man. He is the closest union of humanity and divinity possible. This should mean he’s a perfect representation of the human being intimately linked with its Creator. And yet, Jesus seems to defy some of our expectations about perfection. For one, he not only experiences the same sorts of limits and vulnerabilities we do, but he keeps the marks of his crucifixion even after being raised from the dead. What’s up with that? Perfect humanity can be born, live, and die (quite brutally), and when it’s raised to new and transcendent life, it will remain pockmarked by nails and spears?
Disability theologians have seen in this puzzling biblical data a call to reassess our notions of perfection. Nancy Eiesland, who is in many respects the fountainhead of disability theology, suggests that in Jesus’ resurrection we see “the disabled God.” In her book of that name, she describes how the resurrected Jesus reveals a repudiation of disability as something inimical to flourishing.
But not all disability theologians have wanted to go so far as calling God disabled. Amos Yong, John Swinton, Hans Reinders, and Deborah Beth Creamer—just to name a few—have varied critiques of Eiesland’s particular concept of the disabled God. These critiques have to do with both the ascription of such a seemingly creaturely, contingent category to our transcendent Creator and Eiesland’s relatively narrow focus on physical disability rather than disability more broadly construed. And yet, all of them have followed her in questioning whether we’re as good at judging what human perfection looks like as we’d like to think we are.
Whether we’re good at this task or not isn’t just a matter of academic concern. It’s something that bears on our everyday lives, in ways that often go unnoticed. This happens in legal, educational, and business environments as well as elsewhere.
One such environment worth considering specifically is health care. People were scandalized when Duchesneau and McCullough wanted to have a baby who was deaf because we assume being deaf (or disabled in any way, really) must be bad for a person. That idea has more insidious roots than most of us realize. In Disability’s Challenge to Theology, Devan Stahl points out that much of the way we view health care’s aims rests on an implicit metaphysical outlook that has its origins in the eugenics movement.
When Stahl describes “the metaphysics of modern medicine,” what she’s describing is how medicine as a field implicitly thinks about reality, particularly the reality of human bodies and minds. If the physicist is interested in how things are in our present experience (e.g., what physical state is this matter in and why?), the metaphysician is interested in what things fundamentally are (e.g., what are physical things, and why do they exist in the first place?).
What Stahl shows is that old assumptions about breeding a better human race are still in play today. The field of genetic counseling has roots in the 19th-century eugenics movement. Once the atrocities of Nazi Germany made eugenics unpalatable, eugenicists started calling themselves “population scientists” or “human geneticists.” Twentieth-century advances in our understanding of DNA contributed to the field’s birth and development as well. We can see this terminological evolution in the transformation of the UK-based Eugenics Society into the Galton Institute in 1989 (named after Francis Galton, the father of eugenics) and then, in 2021, into the Adelphi Genetics Forum. The goal of breeding a “better,” “healthier” humanity may have dropped any explicit references to a kind of idealized eugenic person, but the quest goes on all the same. Those who can be “healed” or “mended” such that they meet aspirational criteria for various sorts of functioning should be so healed or mended. Those who can’t are thought to lead lives not worth leading, or at least less worth leading than everyone else’s.
To think this way is to think according to a “medical” or “medicalized” model of disability. Philosopher Justis Koon defines such a model as one that views disability as a kind of “enduring biological dysfunction that causes its bearer a significant degree of impairment.” Here it’s the extent to which one is impaired that determines whether they have a disability. But the degree to which something impairs us is highly contextually dependent. For example, deaf people in contexts where signing is uncommon, perhaps even shunned, might be quite impaired in day-to-day life. But if everyone signed, would this still be the case?
Some might want to say yes. They might suggest that ears are supposed to hear and that their failure to do so is an impairment, regardless of whether it causes negative effects in day-to-day life. But that presupposes a lot. Who or what determines what human bodies are for? Some will appeal to thinkers like Thomas Aquinas in saying that God does this. For, so the thinking goes, God makes human persons according to a kind of blueprint for good things they’re due; one of these good things is hearing. Yet, as Derek Estes points out, Aquinas also thinks that God is the good, full stop. For Aquinas, the highest good any of us can obtain is union with God. What people are for—their purpose as God’s creatures—is this union.
But since bodies, and especially human bodies, are complex wholes rather than mere assemblages of parts, what if a departure from the blueprint actually helps them be in union with God? That suggestion might look odd at first: Doesn’t it seem plain that for any given aberration of the body or mind we might have, we could imagine ourselves in better union with God without it? Ask Jesus and the marks of crucifixion his flesh still bears. If Jesus can be humanity perfectly united with divinity in defiance of our expectations, then why can’t disabled people of various stripes be in perfect union with God too?
One counterargument is that disability theology’s suggestion that such a thing is possible betrays an implicit ableism; it assumes that all disabled people want to be disabled, and it makes that view normative over those who might rather they weren’t. There’s something of this in Eiesland’s work. She assumes a bit too much, and she does so through a lens which really only considers physical disability. But disability theology has undergone 30 years of development since Eiesland wrote The Disabled God.
To say that disability can be a part of human flourishing isn’t to say that every disabled person’s disability must be a part of that flourishing. To insist otherwise is to make a kind of logical error, and contemporary disability theology notes as much.
Christian philosopher Eleonore Stump effectively points this out when she compares the lives of Harriet McBryde Johnson and Helen Keller. Both women were quite notably disabled; Johnson had a congenital neuromuscular disease, and Keller was deaf and blind because of a childhood illness. Stump notes that Johnson—who died in 2008 after a prominent life as an author, speaker, and attorney—saw nothing wrong with being disabled, thinking it very much a part of her good existence. In fact, maybe Johnson was the amazing woman she was partly because she was disabled. Keller, by contrast, seemed to chafe against her disabilities and longed for the day she expected God to take them from her in the afterlife.
Stump suggests that perhaps they both get what’s best for them in the end. In Johnson’s case, maybe that’s remaining disabled; in Keller’s case, maybe it’s not being disabled. But if people can be disabled or not in their perfected states, someone needs to challenge the metaphysics of medicine that treats people as if being “normal” is where salvation is found rather than in the blemished hands of Jesus. After all, when Jesus offers Thomas his hands and side to touch, it doesn’t seem like he is making a rhetorical point. It seems like Jesus really does still have those marks on his resurrected flesh.
Their existence in perfected human embodiment calls into question many assumptions about human perfection. And this has implications for our grace-filled work as friends of God. So, maybe our call to proclaim the good news of the gospel in the world includes a call to proclaim to our health-care systems and institutions that God has decided there’s nothing wrong with disabled people. They need help and care like all of us, sure. But they don’t need their physicians to remove the marks of their disabilities, because their Lord still has his.
