What is Research on Disability? Looking Backward to See Forward

Abstract

Designating disability as an object of research was both the condition for the emergence of the field of disability theology and a paradoxical source of its continuing aporias. One such problematic conceptual dead end is the division in the academic field of religion and disability that has arisen between traditional theological discourse and social scientific approaches to investigating disability. By highlighting the inherent instability of disability definitions on which much social scientific research rests, this paper invites renewed engagement with history and tradition as conversation partners for disability theology. By proposing a critical hermeneutic of tradition, it aims to widen and integrate the range of methodological approaches available to theological investigators of disability.

Keywords:

• disability theology
• empirical research
• Frances Young
• investigative method
• Jean Vanier

Academic disciplines rest on shared internal agreements about appropriate investigative methods and protocols that build up a clearer picture of some object or domain of study. But disciplines are kept alive by debate about which investigative methods are most appropriate for the subject being studied. Those of us who work in disability theology seldom pause to notice the oddity of taking “disability” as an object of study. Is this object an entity in the world, like an apple? Is it an experience? And if it is an experience, is disability something that some people live and other people observe from the outside? Or perhaps disability is a phenomenon that impinges on each one of us in some way, even if many people do not notice it? Who is authorized to answer this question, and so to define what is and is not a disability?

This article highlights the contested and polyvalent definitions of disability in current popular and academic discourse as a starting point from which meta-questions about appropriate methods for investigating disability can be revisited. My aim is to complexify the methodological approaches available in disability theology while at the same time looking for the place where different approaches might converge as a single, if diverse, intellectual investigative project.

My premise is that the topos “disability” represents a non-superficial reality access problem. Paralleling the dilemma of cosmologists studying dark matter, what disability theologians know is that there must be something connecting a set of widely observable and yet somehow opaque phenomena. At points when the limitations of commonly accepted definitions and explanations have become apparent, it is clear that widely shared descriptions of the various phenomena involved must, in some way, be misleading us and obscuring the very object they aim to describe.

I pursue the problem of disability from a theological vantage point. All traditions configure the reality-perceptions of those who inhabit them. Those who understand themselves as part of a tradition experience the past as a critical resource in coming to grips with contemporary reality. It is in this way that being part of a living historical tradition offers an epistemological gain that can, and should, be harnessed to generate social criticism on behalf of and alongside those who are labeled “disabled” and excluded from the traditional structures of socio-political engagement.

For the Christian tradition to offer this epistemic gain, however, demands that Christians come to terms with the subtle and overt ways that they 1) disparage the wisdom of the past on which their own tradition necessarily rests, and 2) obscure the fissures in their own tradition. I will defend the importance of taking religious traditions seriously in an emancipative discourse like disability theology and highlight the cultural work involved in the creative receipt of internally heterogenous traditions in new settings. As Thomas Reynolds (2013) aptly observes, “Communities of memory do not simply collect episodic events and place them in sequential order; rather, they reconstitute by re-gathering or re-collecting the past in a way that highlights certain events as formative, accordingly interpreting other events in their light” (p. 290).

After setting out the current state of the discipline of disability theology as I understand it, I will offer five methodological observations on how Christian theologians might study disability, whether or not they personally identify themselves as disabled. The split between empirical and theological approaches to disability has solidified in recent decades, so converging with modern definitions of science as well as public expectations about what counts as scientific knowledge. One effect of this convergence has been the importation of the bias common in science against old ideas as outmoded. A return to look more closely at the historical evidence can reveal this bias to be inaccurate in specific cases (thesis 1) or suggest ways in which our contemporary blind spots rest on historical ideas, which can be critically engaged by way of historical analysis (thesis 2). A third thesis draws attention to the potential to pursue investigations of disability by seeking out more recent examples of moments in which theological insight has in fact staved off hegemonic ways of viewing disability. Thesis four investigates a thinker who has shaped contemporary thinking about disability, Jean Vanier. Vanier’s life and work presents disability theologians not only with unappreciated insights into the Christian faith tradition and its sacred texts as well as with a task of (self-)critical reflection. A final thesis sets out the methodological implications of the theological investigation of disability being at work at the intersection of synchronic and diachronic time horizons. A brief conclusion suggests a new unity of the theological study of disability grounded in renewed appreciation of the diversity of cultural spaces in which it is deployed.

Disability: Defining the object

Generational and factional struggles over the definitions of key terms are a staple feature of research cultures. A discipline that cannot agree on its object of study is at once in a perilous and yet promising position (Kuhn, 1996). Macular degeneration, Down’s syndrome, quadriplegia acquired in an accident, cerebral palsy, obsessive compulsive disorder, and bipolar disorder: what warrants lumping these conditions together under the single heading “disability”? Autism researchers in neurology, to take one example, often proceed on the assumption that what is currently lumped under that heading is unlikely to be a single neurologically unified entity. More likely, a cluster of disparate neurological patterns, acquired by different etiological pathways, produce the sorts of apparently similar behavioral profiles loosely gathered under the heading “autism” at present (Park et al., 2016). This type of definitional problem often appears in social scientific studies, which rarely, for instance, have research designs capable of presenting the experiences of people with physical disabilities and learning impairments as a single group. When social scientists study the experiences of those with intellectual and physical disabilities, they must often deploy noticeably different investigative methods. Thus the question: are they then studying one phenomenon? What arguments are adduced by such social scientists for and against the claim that disability is a single phenomenon?

Disability and religion researchers are at least united in the claim that it is insufficient to define disability as deviation from supposedly “normal” human functioning. Beyond this bare-minimum agreement that the medical definition of disability as deficient functioning ought not define the terms of the debate, little consensus has emerged as to the object of disability theology. The primarily critical and emancipative discourse of disability studies has worked very hard to prevent the solidification of superficial alternative definitions of disability, well aware of the tendency of words and labels to become reified and apparently self-authenticating truths that nevertheless contort important aspects of the lived reality of those who use them (Nietzsche, 1999). Their entirely laudable aim is to avoid slipping into confusing our descriptive terms with the things, attitudes, and behaviors that the words are supposed to be helping us to understand.

Nevertheless, it is not difficult to find people who happily report having experiences of disability, and it is at least possible to investigate the content of these self-descriptions. The social sciences have developed a powerful set (or sets) of practices for bringing such experiences into textual form, neatly circumventing investigative paralysis before the definitional paradoxes surrounding the concept of disability. This pragmatic solution to the problem of defining disability does not, however, make it go away. Whose experience will be studied as a “disability” experience? And what aspects of those experiences will be counted as the “disabled” part? Some who were born with conditions that have been labeled disabilities cannot be said to experience disability, as they experience their own lives as utterly unremarkable. If they have an “experience of disability,” it is a slowly dawning awareness that others seem to treat them like they are different, expecting different things from them. Often, these are precisely the people who cannot articulate their own experiences for empirical researchers. Furthermore, ought we to consider those who live with such people as not themselves disabled, yet still having a disability experience? Is such a separation of “disability experiences” from “having a disability” an unwitting reinscription of medical models of disability? To take a different example, some people may experience chronic, debilitating pain, or highly distracting obsessions, and yet not be considered disabled by most people even though their experience is clearly one of impaired function (Kafer, 2013). For socially understandable reasons, others may also resist the label of disability in the desire to distance themselves from what they assume to be paradigmatic forms of disability. The design of social science studies at the religion and disability intersection often do not carefully address these problems.

The determination of social science researchers who address disability and religion questions has clearly had a wide range of positive effects deserving grateful recognition by traditional theological thinkers of all stripes. Supreme among these benefits is the success of social science researchers in capturing voices expressing disability experience in their own terms, voices that have been regularly ignored in churches as well as in the secular political realm. These studies have also deployed quantitative methods that offer a much-needed sense of the scale of life challenges faced by people with various disabilities, such as barriers to healthcare access, or precisely documenting the various limitations suffered by people who live on benefits or in permanent care settings.

It is worthwhile to pause and ask why such studies have proliferated and gained cultural traction in recent decades. The persuasive power of quantitative social science studies has grown alongside the widespread emphasis in educational curricula of the developed world on the value of quantitative thinking in all curricular areas (Ihde, 1990). It is unremarkable in such a technologically-focused cultural context for quantitative data to have become established among policymakers, the educated elite, and the population at large as the marker of academically serious research. Qualitative studies were essential to establish disability as a significant problem in societies in which the majority assume quantitative thinking to be the hallmark of scientific factuality. For the same reasons the rise of qualitative studies of disability were an indispensable step that had to be taken to establish the validity of disability theology as an academic discourse.

Despite these contributions, however, the Achilles heel of social science studies of disability must not be overlooked: its proceeding as if the entity “disability” can be readily defined. It may be scientifically and ethically defensible for social scientists to presume that people’s self-descriptions ought to be taken at face value. At the same time, it is intellectually perilous to ignore the possibility that while common-sense self-descriptions are very likely to be true in some respects, others are almost certainly useful fictions that people continue to deploy because they have a useful social function. When investigating a phenomenon like disability, one so obviously riven with conflicting popular understandings, descriptions, and experiences, empirical study faces a particularly difficult conundrum that cannot be fixed by deploying statistical accounting measures.

Nor do quantitative methods easily admit queries about how the researcher’s own views shape definitions of the object of study. How do the definitions of disability assumed by the researchers themselves escape the popular conceptions that may be practically useful shorthand and less true to reality than we all suppose? How, for instance, do people who have emerged from the enculturation process called “graduate education” ensure their own internalized definitions of performance and success are not bleeding into their definitions of what will be counted as a problem to be studied (Bourdieu, 1998)? As Jean Vanier has pointed out, this problem is particularly acute for those proposing to study those human beings already burdened by multiple layers of social stigma. Disability is a phenomenon that is intrinsically connected with our own sense of vulnerability, and by extension aspects of human life we do not wish to see. “Who are those we refuse to look at, listen to and accept because they make us see our own brokenness in such a way that we would be forced to change our ways?” (Vanier, 2004, p. 166).

Some secular social scientists (typically non-quantitative in orientation) have developed a range of routines to ameliorate aspects of this methodological problem (Faubion, 2011; Ingold, 2011; Lefebvre, 2002). But because they have embraced a religiously neutral (formally atheistic) investigative method to describe problems, they have bracketed out the faith commitments on which a normative account might be built that could suggest how the problem now rendered visible might be ameliorated. For this normative task, a very different approach from social science description will need to be deployed in a second step, as has been increasingly recognized in the dialogue between ethicists and social scientists (McKearney, 2019).

The presumption of (late-)modern thinkers that disability is a clearly understood concept, and one that we are clearer about than previous generations, may well emerge as a particularly hubristic stance to those who have honestly faced the depth of the definitional dilemmas currently besetting the academic study of disability. A modern prejudice that we moderns are the first to clearly see disability often infects those of us attempting to think about disability and the moral imperatives that surround it. Methodologically speaking, the modern prejudice that we know what disability is rests on a more widespread assumption in late modernity that scientific knowledge is a “cutting edge” phenomenon. Science, we moderns assume, is by definition a progressive, disciplined movement from less accurate reality descriptions toward ones which are more complex and accurate. This presumption about the location of the investigative horizon in most academic disciplines is firmly wedded to the further presumption, rarely acknowledged or examined, that old reality accounts are inferior to the newest accounts. It is a presumption that positions the most important dialogue partners in a scientific investigation (taken to be the only “serious” and “rational” form of investigation) to be people living in the present.

Social science approaches to disability embrace the trajectory of most modern academic study, especially prominent outside the humanities, that privileges the synchronous temporal horizon in the practice of research. The “vertical” or diachronic temporal horizon is treated, at best, as a curiosity. Certain cognate disciplines, such as medical history, have already become aware of the limits of this presumption (Linker, 2013). When scriptural faith traditions are reformulated to conform to this modern presumption, they become entirely different entities in repudiating the core of the biblical view of tradition, which the Psalmist succinctly encapsulates:

“O God, from my youth you have taught me,

  and I still proclaim your wondrous deeds.

So even to old age and grey hairs,

  O God, do not forsake me,

until I proclaim your might

  to all the generations to come.” (Psalm 71:17-18 New Revised Standard Version).

In this passage the historical assumption shared by the three monotheisms is crystal clear: the community of faith does not create new knowledge, but understands old knowledge in new constellations and contexts.

To be part of a faith tradition demands believers at least be prepared to grant that the many generations of believers who have come before them understood reality in ways that each generation must be incorporated into. To grant this to precursors in the faith is to foster in us a hope that they had insights into various aspects of the many and diverse phenomena we indiscriminately lump together under the heading “disability,” insights that we can harvest today. It is this hope for insight that gives believers the courage to discover that their own tradition too has in certain respects led them down perilous and blinding paths. The following five points offer a preliminary survey of how such a work of creative remembering and self-critical engagement might proceed as academic research in disability theology.

Historical investigation can explore other times and places with a view to discovering viewpoints and practices in which people considered disabled today were treated in unexpectedly positive and constructive ways

Andrea Pearson’s article “Sensory Piety as Social Intervention in a Mechelen Besloten Hofje” (2017) offers an example of such an historical investigation of disability. Her work focuses on 16^th century Netherlands and a type of devotional cabinet called a hofje. Hofje are devotional objects much like altarpieces with winged doors, but unlike an altarpiece, a hofje is adorned not by a flat painting, but with three-dimensional depth. They present a diorama scene to worshipers, characteristically a garden scene reminiscent of the garden of Eden. The viewer is thus set before a healing garden suffused with visually rich and tactilely complex three-dimensional ornamentation.

Such lavish garden imagery was considered particularly appropriate for monastic hospital complexes in bringing viewers close to the scene of the original perfect state. Pearson focuses her attention on a specific exemplar that features a prominent painting on the outer cabinet door of a woman in a nun’s habit kneeling in prayer. The nun is at eye level when the door swings open, making her image impossible to overlook. Her eyes are closed and have the distinctive sunken ocular orbits characteristic of blind people. In a feat of admirable historical sleuthing, Pearson identifies the blind nun as Maria Van den Putte. Maria has clearly been admitted as a sister to a religious order committed to care for the poor, indigent, and ill. Her attire and praying posture definitively locates her as a representative of the convent’s spiritual values as well as devotional and charitable practices.

Hofje are replete with rich, three-dimensional depictions of flora, fauna, and fruit and necessarily implicate sensory devotion. Depicting a blind woman on the front of one of these objects thus raises questions about how a blind woman might participate in a community of nuns practicing visual devotion. Similar questions are provoked about the sorts of virtues that could be expected from a blind nun.

In light of Maria’s apparent visual impairment and the negative conceptions of the blind and blindness that were circulating, the Besloten hofje seems intent on situating the spirituality of Jacob, Margaretha [Maria’s parents, who also appear as patrons in the painting] and Maria favorably, to position all three as worthy of salvation, moreover, it asserts that Maria was deserving of profession at the hospital. …all three supplicants are [depicted] in prayer before the saints who appear in the garden…which suggests a broad understanding of the values they exemplified. For Maria these values included purity, charity, and wisdom, which were particularly emphasized in religious women’s communities. (Pearson, 2017, p. 13)

Pearson goes on to suggest that Maria’s parents may have chosen to give the nuns of the hospital a hofje precisely because its sculptural tangibility encouraged variety in sensory-based practices of devotion. Various gestures in the painted figures highlight the practice of hand-based versions of rosary prayer, and the garden imagery itself draws attention to tastes and fragrances.

In the late medieval charitable economy, disabled people had long been positioned as important objects for the charitable giving of Christians, who in so doing accrued salvific merit. Yet during this period in some Netherlandish urban centers, attempts were afoot to decouple relief for the disabled from redemptive almsgiving to reduce begging, which was increasingly seen as a public nuisance. The urban monastic infirmaries that had traditionally administered care for the ill and destitute were being asked to expand by local governments and to implement regimes of stricter surveillance. The reasons behind this move were bluntly stated by the humanist author Juan Luis Vives in 1526, “We know that the blind can make little boxes, chests, baskets, and cages; blind women spin and wind yard. Let them not wish to be idle or avoid work; they shall easily find things with which to occupy themselves. Laziness and sluggishness are the reason why they say they cannot do anything, not a physical defect” (Pearson, 2017, p. 20).

The hofje in question was made during a historical moment in which the charity model of disability was giving way to the compulsory improvement model of disability we associate with Victorian workhouses. This new model rose to complete dominance in the Netherlands and was the main way disabled people were understood for centuries to come, including among Christians (de Mooij, 2012). It appears that in commissioning this piece of devotional furniture, the Van den Puttes intended to preserve their blind daughter’s right to participate in the life and work of the community of nuns. That the community itself was being asked by the city authorities to play a greater role in “reforming” blind people makes the gesture particularly thought-provoking today. The Van den Puttes were offering an invitation to at least the nuns in Maria’s order to consider their daughter “one of them” and in so doing to question both the old moral positioning of blindness as well as the new order of confinement and surveillance that was beginning to emerge. They were doubly repositioning Maria: first away from a location alongside those blind people who are “needing to be made productive,” and questioning the very claim that the task of the monastery is to “make them productive” rather than to serve among them in prayerful repentance.

Pearson’s article is one of many examples that does not directly engage contemporary questions about disability, but identifies a historical moment to question and complexify our modern presumption that we are the first ones who have faced the questions we feel disability pressing upon us (Trevett, 2009; Reibe, 2018). Such historical moments usefully challenge the contemporary assumption that our problems are novel by offering conceptually provocative “religious countermodels of disability” (Reibe, 2018, p. 144).

This example of the Van den Puttes’ subtle attempt to position the life of Maria by offering her religious community a rival account of blindness is highly culturally specific, yet raises a range of questions among contemporary Christians. How might modern Christian devotional practices exclude those with learning impairments or sensory incapacities? Might some contemporary devotional practices exacerbate assumptions among contemporary Christians, for instance, that those who are unable to read the Bible or pray out loud or make their confirmation confession may perhaps be incapable of being “real” Christians (Shea, 2019)? It is in this way that such historical case studies can provoke contemporary believers to think in a more polyvalent manner about avenues open to Christians who wish to agitate for change in the church on disability issues. It is also a reminder of how the persistence of modern ableist presuppositions has led to disinterest in such historical materials.

Historical investigation can revisit ideas and assumptions that have been determinative in forming our own conceptual grids and their aporias

My first example examined a particular historical moment in which disability figured, without making explicit connections with contemporary moral problems. The reasons for selecting a particular historical episode for close investigation need not be directly discussed when this first investigative approach is deployed. A closely related approach begins explicitly with the connection between the present and the past, returning to a specific historical moment explicitly in order to gain critical purchase on an intractable contemporary problem. This second type of investigation aims to open up some distance from problematic contemporary paradigms, unquestioned conventions, or implicit value judgements, and has been more popular in theological investigations of disability (Cross, 2012, 2017a, 2017b; Moss, 2011; Nolan, 2000; Schofer, 2010; Schumm & Stoltzfus, 2011; Stainton, 2008; Volp, 2006). Subversive yet appreciative use is made of historical texts in such studies in order to challenge the tacit normative dynamics of contemporary thought and practice.

On my reading Miguel Romero’s recent work on the theological anthropology of Thomas Aquinas is an extended deployment of this strategy. He suggests that modern accounts of disability, as well as mainstream Thomist anthropologies, are trapped by assumptions about intellectual impairment that are not true to their supposed source in the works of Thomas Aquinas. Thomists have too often presumed that they can talk about anthropology while bracketing conditions like intellectual impairment in ways that Aquinas did not. Disability theologians reading Aquinas have criticized him from a different angle, given their presumption that ideas like “defect” are always pejorative and ought to be expunged from Christian theology. Both defenders and critics of his purported views of disability themes have tended to assume that the concept of disability is an “internally coherent, conceptually stable, ahistorical category for Christian theological discourse” (Romero, 2007, p. 222).

Romero revisits the work of Aquinas in order to show doctrinaire Thomists that Aquinas had a more supple anthropology than they presume, and doctrinaire disability theologians that Aquinas still has something to offer them today. Aquinas, he suggests, had a nuanced account of the vulnerable and dependent nature of all human bodies. Human bodies are good as the type of creature that they are, being neither angels nor worms. Their limits are fitting for the sorts of things they are. Limit and vulnerability are therefore not a problem for a theological account of the human being, not a defect in our modern pejorative sense, but constitutive of the human condition. Such bodies can be injured, impaired, or fall ill, but to focus on some people as more impaired than others, or impaired in a more unseemly way, is to look through the wrong end of the telescope:

A theological outlook that places unwarranted emphasis on carnal agility, ability, or comeliness is an obstacle to the Christian theological consideration of our ultimate spiritual-corporeal beauty. Just as glass saws cannot cut, invulnerable bodies cannot learn and grow. In that way, for the human body, according to the Christian view outlined by Aquinas, both our innate vulnerability to defect and an instance of corporeal defect express something of the essential beauty of the human being in the good order of God’s creation. Aquinas’ argument does not amount to a vapid “ugly on the outside, beautiful on the inside” proverb. Rather, he argues that what some people perceive as ugly is, in fact, evidence of what is ultimately beautiful about the human being. (Romero, 2007, p 243)

Romero suggests that understanding the subtleties of Aquinas’ argument can help Christians today see that Aquinas is not distancing the severely intellectually impaired from “the rest of us,” but is intentionally placing all humans, whatever the configuration of their creaturely limitations, on the same ontological level. Such a move undoubtedly relocates the question of what disability is to other conceptual domains. However, Romero exposes the tendency of theological anthropology to draw on ontological accounts like that of Aquinas to question the full humanity of people with disabilities. Such an ableist caricature simultaneously deprives disability studies of the constructive power of his views in anachronistically rejecting his use of the word “defective.”

Walter Benjamin’s famous image of the angel of history has much in common with these first two approaches. The angel is revelatory in its being propelled into the future by the blast of the wreckage, piling up in the past, on which its eyes are fixed (Benjamin, 2003). Benjamin is asking academic investigators interested in normative claims to think about the way moving beyond our own intellectual blind spots is tied up with looking back on the disastrous mistakes of the past. The Greek term for method emphasizes this precise aspect of intellectual investigation: hodoi literally means a way or path. To investigate something is to venture on a journey (poreia) which has as its aim not complete knowledge, but the removal of successive barriers to knowledge (aporia) (Plato, 2013, 531d-534e). By immersing ourselves in the intellectual sources of the conceptualizations that define our understanding of our problems, we might both see how aspects of past thinkers’ assumptions have wrongly constrained our own, but also discover that they saw more of the phenomena than we have. At these moments, inheritors of a historical tradition may rename the phenomenon being studied, revise the meanings ascribed to key terms in their tradition or in vernacular usage, and reevaluate or relocate the normative significance attached to an idea or description. Apparently insoluble contemporary problems may sometimes become intelligible to those who have acquired more fine-grained sensitivities through deep engagement with the past.

If these first two methods of historical investigation are to be responsibly deployed, those who practice them should also be aware of their limits. Tracing the historical roots of words, themes, and ideas is valuable insofar as it may alert us to how meanings have changed over time. What cannot be assumed is that an historical excavation of a past usage bears directly on contemporary usages or idea constellations. Sometimes ideas are invented but never come into widespread circulation; at other times, longstanding practices stabilized by taken-for-granted linguistic descriptions have been interrupted in ways that have radically changed our capacity to make sense of earlier complexes of speech and practice. In such cases contemporary ways of speaking and acting may only tenuously overlap with earlier usages. It is easy to let the project of recovery obscure the central aim of engaging historical excavation as a means to critique and reformulate contemporary practice.

Historical investigation can seek insights into aspects of contemporary reality denied by dominant accounts of disability

The previous two examples date from the late medieval period, but the historical investigation of disability need not reach so far back in time and cultural space. Studies of this type might instead look back only a generation or two and consider more closely the power of previously unappreciated theological insights that can provide scholars a vantage point from which to see phenomena masked by regnant thought schemas.

One such revealing moment occurs in Frances Young’s critical engagement with modern special education in her autobiographically inflected theological engagement with disability, Face to Face: A Narrative Essay in the Theology of Suffering (Young, 1990). Young is an English Methodist biblical scholar and theologian who at age twenty-eight bore Arthur, who is severely intellectually handicapped. She reflects on Arthur’s education in a chapter entitled, “The Dark Side of Hope,” and draws attention to the practical difficulties that arise when the systems of modern healthcare and education, and the people that populate them, are unable to embrace the reality of limits. Some people, she insists, reach their peak functioning at a relatively underdeveloped state, or will no longer develop. Thus treatment and education plans can press unrealistic demands on a specific child’s capacities. Other times reasonable treatment and educational regimes may ask unreasonably much from families or other classmates. There are times when everyone is just trying to survive, and simply cannot manage the efforts that professionals believe to be the optimal treatment or educational regime.

Young came to these conclusions as Arthur wended his way through the full course of a special education curriculum organized exclusively around the educational goal of independent living. This meant Arthur’s education was laser-focused on training him in the skills of self-care. Arthur found his first few years in school traumatic and suffered from the social buffeting he encountered from other children. The anxiety of this period led to the acquisition of aversions to those things that were the central focus of his education, most problematically, eating. Battle lines were drawn that were to endure for a lifetime, with eating becoming the prime site of endless contest as Arthur struggled to reassert control over his life.

For years his existence in school was evidently miserable and his progress non-existent.

Emerging from all that, I am convinced that there are far more valuable things than “progress”, and pressure for “progress” can actually get in the way of developing those more valuable things. What matters far more is trust and respect, a relationship in which love can flourish because it is relaxed and accepting. Love for a handicapped child can be possessive and dictatorial to the point of damage if our aims and hopes are inappropriate. In the present climate, that is much more likely than leaving them to be without any stimulation. (Young, 1990, p. 201)

While the normalization and inclusion movements that have visibly improved the lives of many are to be applauded for repudiating the limitations once placed on the learning impaired, the existence of limits does not disappear in specific individuals. When these limits are not appreciated, sooner or later the ideology of continual physical and educative progress becomes crushing. The ideology of continual progress is an often noted feature not only of much special educational theory, but of secular humanistic optimism more widely. Western democratic societies “admire the handicapped achiever” (Young, 1990, p. 205) and therefore cannot but emphasize every small triumph as well as maximize the capability of disabled children by whatever efforts necessary from good parents and trained professionals. Progress in education is assumed to enhance the dignity of the individual and increase their social acceptance, rebounding to increase their levels of self-esteem.

It is in response to this cultural context that Young asks whether caring relationships and mutual dependence aren’t more important than proficient behaviors. What kinds of “little triumphs” are worth 20 years of drilling to achieve? Does this drilling amount to behavior modification rather than actually learning? Does special education risk becoming manipulative in ways that deny children’s true humanity?

Society measures triumph in terms of preserving life at all costs, developing full potential, overcoming the odds. But might not the real triumph be the ability to receive from one another, to discover interdependence, to find values which make success and death equally irrelevant? Should we not allow the handicapped [sic] to stimulate questioning about the value of autonomy and look for other forms of transformation? (Young, 1990, p. 205)

Young’s own answer to these questions grows directly from her account of the image of God. In her “child of God” ecclesiology, the mutual interdependence of all who bear the divine image is paramount.

Young’s questions are discomforting, of course, and have not been widely shared among disability theologians. Her experiences with Arthur provoked her to question the sacred cows of modern disability advocacy, the unquestioned supremacy of self-care and autonomy. But her certainty about the contours of her own experience of Arthur’s education was oriented by a robustly theological understanding of disability. Because she did not rest her faith in secular progressivism, she was emboldened to insist on the importance of contours of reality that are almost unthinkable in some quarters of the disability advocacy movement.

Young’s ability to point to a truth that modern secular rationality finds difficult to critically interrogate is a sign that her theology is doing work, not only to parse her own experience, but to shore up her capacity to defend her experience as revealing something about the various phenomena labeled disability. None of us continually improves, none of us achieves “normality” in a real sense, and seen in this light the idea that genuine self-sufficiency is achievable is at best a partially useful fiction. Yet much of the public discourse around disability is oriented by these very ideals. Though her experience might reflect a different era in the history of special education in Britain, her warning continues to be theologically resonant to the extent that the ideals of continual therapeutic improvement and self-sufficient independence remain the goals of education and inclusion movements today. In this text, Young offers an example of the potency of Christian faith to question the intellectual conventions of the age and in so doing to be more truthful to experience. Her clarity that taking people seriously demands calibrating our hopes in ways that takes their particularity seriously, a theme with particular prominence within disability theology (Reynolds, 2008, chapter 3; Creamer, 2009, chapter 5), and is an especially useful point of contact with those exploring similar questions outside traditions of theological inquiry (Solomon, 2013).

The writings of Christians who have given extended attention to the phenomenon of disability have developed creative contemporary readings of our own scriptures and theological traditions

I have presented one strand of Frances Young’s work as a suggestive site for research into disability in the clarity and creativity with which she has drawn on the historical Christian tradition to illumine contemporary dilemmas. As with my first and second points, the approach set out in section three also has a mirror image. Some believers have given such concentrated attention to people called disabled that they have generated powerfully creative contemporary readings of Christian scripture.

The figure I want to engage under this fourth heading presents a more complex and difficult case. There is little doubt that Jean Vanier’s life and writings have directly influenced important streams of contemporary disability theology. The scope of his influence has become highly problematic in the wake of the investigation commissioned by L’Arche International that revealed his involvement in coercive sexual activity with several women over several decades. Out of respect for the harm done to the women involved, some will choose to distance themselves entirely from Vanier and his work. It is probably prudent to allow the initial shock of these revelations to cool before attempting to defend or rehabilitate his legacy. In the final analysis, however, being inheritors of a legacy of thought and practice demands critical engagement with that inheritance, one that does not evade the reality that our thinking and practices have been shaped for good and ill by our most influential precursors.

Ultimately it is irresponsible to look away from the failings and points of shortsightedness bequeathed by those who have most shaped our thinking and academic discourses, because to do so only perpetuates their blind spots (Brock, 2013). Thus, it will in due course be necessary to undertake the critical assessment of Vanier’s legacy in disability theology. I do not intend to undertake that critical assessment here, which I believe would be premature. The critical work to come will only be genuine criticism of our own tradition if it is prepared to allow that the tradition has shaped us because it is reality-exposing, and life giving. A genuinely critical engagement with Vanier’s work will therefore be one that allows that he may have drawing attention to strands of the biblical witness that Christians take as authoritative in ways that remain lifegiving for those still concerned with disability. Some of these themes have not been recognized to date, I want to suggest, in part, because his theology proceeds by linking of biblical images, an idiom rarely recognized or practiced by professional theologians, despite being one of the main modes of theological argumentation in the premodern tradition (Preus, 1999). Most disability theologians who have drawn on his work have been more interested in his practical insights or in mining his various works for his views on a small set of theological themes such as friendship or belonging.

In short: Vanier’s influence on the discipline demands that his work be critically engaged in due course. A genuine critical engagement with Vanier’s work may not yet be possible as the long overdue cultural wave that is #MeToo crashes over western societies. But when the time comes, any serious engagement with his legacy is sure to discover that certain themes in his work are now hopelessly contaminated, and in ways that should serve as a cautionary tale to those who continue to draw on those themes in their own work. All that said, genuine criticism of one’s own intellectual precursors is intellectually dishonest if it is nothing more than a debunking.

Thus, any honest critical appraisal of Vanier’s legacy will also likely reveal theological insights that have to date made little impact on the scholars who have to date been most influenced by his work. Some of these theological insights will continue to promise fresh intellectual avenues for theological thinking about disability. These promising themes will need to be located and disentangled from the problematic aspects of his thinking and practice. The remainder of my discussion in this section will briefly highlight two points at which Vanier’s engagement with the phenomenon of disability led him to discover previously unnoticed interpretative avenues for Christian biblical interpretation, avenues that still remain worth hearing, despite the messenger.

Consider Vanier’s depiction of the gospel, which foregrounds redemption as the presence of Christ to give life and of restoring the fruitfulness of human beings. He deploys the biblical imagery of the waters of life in the vision of Ezekiel 47 in order to celebrate Christ’s redeeming work.

We must always remember that the waters are flowing not just from the heavens and from the places of light, but also from the broken earth: gentle springs of living water are flowing from the broken bodies and hearts of the poor. We must learn to drink from them, for they bring into our presence the wounded and broken heart of Jesus, the Crucified One (Vanier, 1989, p. 103).

The life-source of Christian faith is never the church nor doctrine, but solely the present Christ who actively frees human beings from fear and heals their despair. Vanier’s use of the uncomfortable language of “the broken bodies and hearts of the poor” can be read as intentionally ambiguous, designed to trouble what initially seems like a clear-cut distinction between ourselves and those we think of as weak. Vanier turns the language toward his hearer, revealing their inner resistance to relationship as the more significant poverty. The good news of the Christian gospel is that no one lives out of their own resources, but must receive life from Christ. And Christ is not without his community. Thus, “A community is never an end in itself; it is but a sign pointing further and deeper, calling people to love: ‘come and drink at the source which is flowing from the Eternal and which is manifested in each act of love in the community, in each moment of communion’” (Vanier, 1989, p. 103).

For Vanier, this is not, and in fact cannot be, an abstract claim. The gospel is not a message about something that happened in the first century, but, echoing the psalmist in Psalm 71, is a witness to God’s living claim and active work of bringing freedom to specific human beings. It can only be “called forth by God, as he inspires a particular man or woman or a group of people to respond to a specific cry or need of humanity at one particular moment of history” (Vanier, 1989, p. 89). As a result, the response of Christians to disability can never be the mere institution of a program or system to resolve the “problem” of disability. The saints are called to give life, to be a conduit of God’s lifegiving. “For whom will they give their life?” (p. 91). The particularity of this divine call in the human cry is the precondition of communities coming together around those with disabilities. The cry is the focal point of the unity of community; this cry is the dry ground that calls forth the healing waters of the community, beginning by drawing its focus together in this need.

The methodological radicalism of Vanier’s consistent insistence on the concreteness of the cry of human longing for relationship and necessity of human response issuing in real healing has not yet made serious inroads in approaches to disability theology, even among those who study Vanier’s life and work. Theologically speaking, Vanier’s abuse of this language to manipulate women for sex is his most grievous offense, and highlights both the power of this account of the real presence of the redeeming Christ, and the dangers that can attend it if sin, self-deception, and communal discernment are not explicitly included in how it is understood and practiced.

What Vanier sees, however, is that this account of the redemption of human life is a deep logic of scripture, which continually challenges and repositions traditional Christian doctrine in demanding that the phenomenon of disability be understood in a more rounded manner. If Christ’s freeing and healing work is the church’s source and sustenance, a challenge is leveled at all Christians and churches to examine the many tacit ideas and practices by which they reinforce the experience of disabled people as being somehow an imposition. A church that is learning gently to challenge disabled people’s belief that they are an unwanted burden, whether learned in society, family, or the church, is developing habits that will be life-giving to many groups who are constantly treated as if they are too costly to accommodate.

That Christians in fact continually reinforce the sense of internalized inferiority of already marginalized people highlights the necessity of Christian repentance and transformation. Such people call themselves Christians even while their own lives reinforce rather than liberating people from despair. Again the concreteness of this rejection is the sin, not the holding of mistaken ideas about people or prejudicial attitudes. Vanier’s basic starting point for thinking about disability thus usefully repositions the disabling that matters from matters of the functioning of body and mind to the heart’s resistance to community. To accomplish this repositioning he has had to preemptively short circuit the familiar linkages of the topic of sin with theodical questions about why disability exist as well as approaches that heighten awareness of guilt as the doorway to salvation. His alternative depicts the crucial sin as the struggle in every human heart to give up the belief in the importance of winning and success and so the fatal love of performance and self-sustained righteousness. In so doing he has refused the holy innocent tradition that excuses some of the intellectually impaired from the problem of sin, which he does not think is true to the phenomena, while at the same time refusing to describe disability as an unwanted effect of the fallen and broken nature of creation. These are perennial themes in Christian theology that have not yet found robust expression in disability theology. Vanier’s own resistance to communal censure and transparency must be investigated in order to understand better what it takes to faithfully, and in community, live out such insights into disability.

This brief summary of the theology on display in one chapter of Community and Growth is sufficient to suggest that Vanier’s linkage of the gospel message of Jesus to a thread in the prophetic witness of the Old Testament (i.e., Ezekiel 47) contains resources that might liberate contemporary Christian theology from habits inherited from a modern theological tradition not particularly interested in disability. In offering alternatives to those inherited habits, the work of critically harvesting Vanier’s theology may still have something to offer to modern theologians whose limited theological imaginations have hamstrung their ability to achieve their own stated ideals, an approach that has only been fitfully pursued in disability theology (Mclachlan, 2018).

The commitment of Christian theology to scripture can protect disability theology from the loss of the diachronic investigative horizon

My first four points have highlighted the importance and utility of looking beyond the contemporary context when theologically investigating disability. My final point highlights how this interest in the past is intrinsically connected to the liturgical practice of Christian faith with scripture as its fundament.

Biblical faith is a tradition, something handed down. The English word “tradition” derives from the Latin traditio, meaning “to hand on” or “to hand over.” Traditions persist because they hand down truth from generation to generation, which each successive generation believes it is crucial to preserve. Traditions are lived reality descriptions that are praxiologically entered—from the beginning of life we are all literally immersed, baptized, into them. Traditions are historically particular entities in which human agents invoke, circulate, redefine and so produce novel deployments of handed-down words and ideas. This has long been understood to be true of even the traditions of scientific enquiry (Latour, 1987). Despite the commonplace (and prejudicial) modern assumption that traditions are simply inherited, in reality traditions only endure because constantly being updated and reformulated—in effect created and recreated ever anew (Volpe, 2013). This work of “making the everyday” is an active work, a receipt of what has come down from others as an active exercise of human agency (de Certeau, 1984). Tradition is the activity of inventing and reworking handed-down treasures in the face of specific personal, social, and political pressure that exist independently of the texts, as well as constructing the unity of those texts that are harnessed to illuminate them (Banner, 2016).

Thus the central task of embracing any tradition, including the one into which Christians are baptized, is to actively consider how its canonical texts will be understood to bind action in the midst of everyday life. The tradition into which one has been baptized is inevitably and only appropriated through critically engaging it in the hurly burly and patterning powers of the many traditions into which modern believers have been born. Contemporary Christians, Thomas Reynolds observes, have learned much from disability studies and specific people called disabled, inevitably producing a different optics in relation to their own tradition. “In paying attention to disability with a new and different optic, we remember differently. We see backward from the present, and (re)search the tradition for previously obscured possibilities and promises, recollecting or retrieving a past heretofore forgotten” (Reynolds, 2013, p. 291).

It is a point that is itself comprehended in the New Testament texts, the Apostle Paul tying it to the problem of faithfully transmitting Eucharistic practice. The spiritual and intellectual work entailed in faithfully maintaining a tradition cannot be avoided because Christians can betray the ancient words of scripture in the ways they receive and enact them. He writes in 1 Corinthians 11:23, “For I received from the Lord what I also handed on to you, that the Lord Jesus on the night when he was betrayed….” What the NRSV translation renders “he was betrayed” is, literally rendered, “he was handed over,” παρεδίδετο (paredideto). The two expressions “I received” (παρέλαβον/parelabon) and “handed on” (παρέδωκα/paredo[set macron over o]ka) are technical terms that, taken together, describe the core actions that constitute any tradition. Paul is here suggesting that the Corinthians are guilty of a misappropriation of the words of institution of such gravity that it is fitting to call it a recapitulation of Judas’ betrayal. There can be a “handing on” that amounts to “handing over” the body of Christ to be crucified once again. Paul speaks here as one commissioned by the Lord to direct the church’s attention to the tradition of that same Lord. It is that activity—“traditioning” his churches in the gospel—that is ultimately at stake when scripture is invoked by believers.

That Christianity is a tradition in the way I have suggested is an asset for disability theology. The advantage gained in drawing on the insights of those who have come before us is one that can be lost, however, when modern Christians become entrapped in the synchronous horizon. This often happens as they begin to think of their worship and their engagement with scripture within atemporal paradigms, such as “biblical principles” or “biblical perspectives,” that position scripture as a collection of data or truth claims that need to be assembled to meet the challenges of the present. Fundamentally, to have a scripture is to admit that we join a tradition that has come down to us and was populated by people who understood reality better than we do, from whom we still need to learn.

Conclusion

The foregoing considerations have repositioned the question with which this essay opened: What is the object of the language of disability? Examining the meeting of synchronic and diachronic horizons in everyday deployments of disability language has exposed previously unnoticed features of our contemporary situation. It has also highlighted the importance of accounting for the continual and intertwined mutations of language and practice over time. The answer to the question of what the object of disability language is turns out to depend on why we are asking and whom we are speaking to. There is no disability in itself across time, space and different cultures. There is only disability-in-contexts, with even developed western culture having multiple praxiological-linguistic spaces defining what will count as an intelligible deployment of the term “disability.” At root, to inhabit a tradition is to be afforded a schema by which particular instances appear intelligible as instantiations of overarching reality descriptions and the normative affirmations that attach to them.

Such an understanding of tradition affirms the rich fertility of the various contemporary usages of the term “disability.” Disability language can be deployed within a governmental context to move lawmakers and support workers toward greater care and justice. It clearly has a contextually specific utility and importance in this social domain. In other contexts, the very same language may be inappropriate, such as when deployed to isolate people, as in asking, “Would all the disabled people stand up?”, or to demean, as do people when they claim, “It would be immoral to burden society with people with such high care needs and low quality of life.” In short: the language of “disability” is constantly being defined and redefined through its uses within lived existences. This is not to claim that different types of bodies and minds do not exist, but to insistently highlight the cultural work going on when anyone is labeled “disabled.” Every use of that label represents a highly contextually specific choice that comes with a range of well understood tradeoffs (Barnes, 2016, chapter 1).

We are now in a position to better address the disjunction that has developed in disability theology between social science and more traditional doctrinal approaches to disability. For some audiences and in some contexts, such as in public policy discussions, a pragmatic definition of disability and a methodologically atheist method of study may be appropriate and even preferable. A methodologically atheist study can be the perfect approach to document problems faced by disabled people in a specific policy context. The logic of its procedure of generalizing from particulars can only be persuasive in a context where natural causality is assumed to be determinative of all intelligible world occurrence. The dominance of that intellectual context in public discourse today renders it a crucial language for Christians to be able to tactically deploy. Considered in this manner and approached with these caveats, the methods of social science can be affirmed by Christians as politically useful. But their usefulness depends on those who use them being on guard against the presumption that the naturalized account of reality is in fact the whole story. For faith communities, these very definitions and methodologies may not only be a problem, but even inimical to maintaining the tradition of faith. In church contexts, it is crucial to refuse to narrate particular persons and events as entirely explicable according to the laws of natural causality, so rendering them unintelligible as episodes in the conversation of God and God’s people. Christian thinking about disability has too often been entrapped in non-theological premises that make disability theology nothing more than a thin Christianized veneer covering what is essentially secular progressivism. Such a reformulation of Christianity according to the framework of universal natural causality robs it of its culture-critical potency.

For Christian theologians, the foregoing analysis highlights the enduring importance of a meta-question: How can we delimit the different types of audience and types of investigative method that will allow us to gauge the appropriateness of different definitions and usages of the ascription of “disability” without stepping outside of the reality-exposing power of the Christian tradition in a thick sense? Attention to this question is bound to increase the contextual awareness and linguistic nimbleness of Christians thinking about disability. Such a “living philology” would take its orientation not from the laws of this eon, but from “every word that comes from the mouth of God” (Matthew 4:4). In so doing, Christians would bind themselves more faithfully to the concrete contours of the demands that face them in the present, which they are inevitably creating by their action in conscious reliance on the past that they both receive and continue.