Amba J. Sepie
Far beyond the reach of medieval English travelers, on the other side of the Mediterranean and across the great Nile River, lurked a dazzling array of malformed men and hybrid monsters… the headless giants, fire-breathing dog men and shape-shifters of “the East” were not mere fairytale fantasies, nor were they simply… metaphors for evil and sin. Rather, they were flesh and blood beings, reported and illustrated in scientific sources, even though they were located at too great a remove to be personally verified.
Asa Simon Mittman, Maps and Monsters in Medieval England (2006), p. 11
The embodied, social experiences of living with a disability, whatever its shape, is something like living in the midst of a perpetual war with normalcy. From the moment we enter the world, our fingers and toes are counted to ten. Pregnancy and childbirth are colored by romanticized constructions linked to the experience of parenthood and what it is likely to entail, enmeshed in a complex arrangement of hopes and dreams. Tobin Siebers writes that “children symbolize, for better or worse, the future of humanity, their appearance in the world is tied to a collective vision of what is to come” (2008, p. 187). The arrival of a new baby is an ideological moment, loaded with expectations, many of which rely implicitly on the notion of the ‘perfect’, healthy baby. Birth is a risk, but one that is thought to have been increasingly controlled by technologies and tests. The fetus has become a patient who can be diagnosed, treated, and quantified in bodily and aesthetic terms. As Frank Chervenak writes, “it is not unreasonable for lay persons to assume that the well-trained physician can see everything and therefore control human biology and thereby assure perfection… It is a small next step to the expectation that medicine can predict the perfect baby” (2010, p. 2). What happens, then, when these predictions are broken? Disability marks the disabled person as not-quite-human, perhaps even cursed, and the mere thought of disability may conjure strong reactions of fear, shock, and disbelief. No-one is prepared. New parents are desperate to avoid the fatalistic condolences offered when the decimal goal, or some other marker of normal, is not achieved. The body of the child, the lives of the parents, and the imagined future is derailed upon the arrival of someone seemingly destined to be forever viewed as less-than-perfect. Camelia Soponaru and Magdalena Iorga observe that, “once the disabled child is born, the parents suddenly lose forever the child of their dreams, the perfect, healthy child; in exchange, they get a child that generates trauma, fear, anxiousness and worry” (2015, p. 6). Mothering identities, in particular are marked powerfully by such an event, their roles and self-perceptions magnified to become spectacles of moral duty and responsibilities, in service to complex ideas regarding the construction of ‘good’ and ‘bad’ mothers.
Decolonizing the Western ‘Normal’
In delineating the construction of normal, modern disability scholars generally follow Lennard J. Davis (1995), who asserts that the word normal, and the constellation of other terms used to describe the same phenomena, did not enter the English language until the 19th century. I argue, however, that the processes surrounding normalcy – as a social construction – are far older than the etymology might suggest. The lineage of the concept, rather than the word, contributes to the authority of normalcy as an ordering device in modern societies of Western origin, or those with significant Western cultural influence. As Davis writes, the world ruled by a norm is totalizing: “The hegemony of normalcy is, like other hegemonic practices, so effective because of its invisibility. Normalcy is the degree zero of modern existence” (p. 170).
In the attempt to delineate the pervasive, yet cultural constructions of normalcy to which we appear beholden, this paper is also inspired by the thesis put forward by Martha Nussbaum (2006) on disability, nationality, and species-membership. As a scholar engaged primarily with issues of social justice, Nussbaum identifies three unsolved problems within contemporary society that have, as yet, failed to attract satisfactory theoretical or practical solutions. These are the provision of justice for all people, in every location, as citizens of the world with equitable rights; the provision of justice to people with mental and physical impairments; and finally, the provision of justice to other species, or nonhuman animals. Whilst Nussbaum considers these as interrelated issues which require a substantive reframing of the social contract, and follows the capabilities approach, I take up these issues at an earlier point; one that is intrinsically linked to very specific constructions of otherness within very pre-modern religio-cultural and geographical thought.
I argue that what is needed to really comprehend the social resistance, stigma, and outright fear that is often directed at disability is a nuanced discussion of these formative religious and cultural scaffolds that have been transferred, if invisibly, into modern ways of living, thinking, and being; especially those which continue to be a part of modern socialization practices. This is an old war, and one that was raging well before the coming of the word, normal. As Bill Hughes maintains, the “narrow norms of human authenticity have played havoc with the lives of those who have been marked with ‘incidental variances’ from the ideal” (2002, p. 572). To counter this, following Shaun Grech and Karen Soldatic (2015), the study of disability has to go beyond the epistemologies of the Global North, beyond the use of the colonial as ‘descriptive metaphor,’ and engage more fully with both the historical and contemporary governance of bodies-and-minds. In other words, disability studies needs to be decolonized, as do the modern, ‘Westernized’ individuals who may assert values and engage in actions that are inherently prejudicial, and often for reasons they are neither aware of, nor could likely articulate.
Whilst the discussion of colonized bodies typically conjures images of the colonial-imperial project; decolonization is not so simple. “We” (referring to all modern global individuals who are in relationship with the ideologies that are Western) are all colonized by a specific set of cultural ideas that have shaped our lives since the transition from pre-modern to modern ways of life. One of the ultimate goals of decolonization is not simply to address historical and ancestral events, wherein forceful conquest inscribed imperialist ideologies upon the lives and minds of the people outside of Greater Europe, but also, to attend to the long-standing effects of the conquest of pre-Christian groups within those communities who would now identify as Western. The objective is to reassess all of our relationships with oppression, or with unequal power relations, in a manner that can effectively reconfigure perceptions of humanity, amounting to improved human-to-human relationships, whilst encompassing proper stewardship of the wider multispecies environment in which we are all embedded, as co-inhabitants of a planet we share.
The goal of social justice projects converge on a number of points that are interrogated across multiple fields, however, when they are oriented toward ‘removing the Western cultural influence,’ or interrogating a dysfunctional norm that originates with Western ideologies, such projects are employing the philosophical perspectives of decolonization scholars, if implicitly. Tanya Titchkosky writes that: “Critical projects such as feminist research, gender and queer theory, and cultural and critical race studies share an interest in questioning how certain people are regarded on the edge of all that counts as human” (2012, p. 82). In addition, the decolonization lens is also fundamentally directed by the idea that the past (and the power relations this defines) has a distinctive bearing on how we think about the present, leading to a nuanced appreciation for achieving right relationships to effect positive social change for the future. Decolonization is, therefore, on many levels, the most appropriate field in which to locate the type of disability scholarship engaged with herein.
Rod Michalko, who connects disability to the idea of not feeling at-home in the world, writes that disability is unwelcome, it “is not valued in contemporary society, it is not seen as normal, and it is certainly understood as a problem” (2002, p. 18). Following Marta Russell, he reminds us that: “History is replete with examples of how societies have solved the problem of unwelcome differences by marginalizing, exiling, even executing heretics, traitors, murderers, members of other races or religions – and disabled people” (Ibid; Russell, 1998). Marginalized groups, or those marked as deviant, are socially clustered together in accordance with their threat potential; albeit actual, perceived, or imaginary. This is not overtly Western, but a feature of societies, in general; variant from one kind of social group to another only in terms of how said group identifies (and legislates) what will count as a norm. Disability is cross-culturally sequestered to the margins of social consciousness. In addition to the burden of this framing, the medicalization of disability has led to the construction of disability as medically individual and unique. The result, as Siebers writes, is evidenced in the on-going effort to establish a politically-relevant collective identity. “The struggle for civil rights is different from the usual process for people with disabilities because they must fight against their individuality rather than to establish it – unlike political action groups based on race or gender” (2008, p. 61). This highlights that whilst the categories of marginalization certainly intersect in profound and significant ways, the ideological construction of individualized disability can be ultimately isolating, perhaps even to the level of experiences similar to quarantine.
As David Turner writes, “how a society defines disability and whom it identifies as deformed or disabled may reveal much about that society’s attitudes and values concerning the body, what stigmatizes it, and what it considers ‘normal’ in physical appearance and competence” (2006, p. 2). For those societies that would identify as predominantly Western, there are a number of moral, legal, and social prescriptions, institutions, secularized rituals, and normative practices that have been defined in reference to a particular European, somewhat Greco-Roman, Judaic and Christian construction of modernity. Hughes asserts that modernity has been essentially normalizing; modernity is about ordering mess, stifling transgression and controlling difference, and it is modernity that “is at the heart of the transformation of impairment into disability” (2002, pp. 571-572). It is important to note that modernity has monotheistic origins, with a core Greco-Christian ethnic identity informing it at root, and a thoroughly Hellenised Judaism characterized by two compatible, yet inherently formal rationalities (Ferguson, 1972; Ruprecht, 2002, p. 79). So powerful are these inheritances and the trajectory set by them, that historical legacies of exclusion are perpetuated, whilst simultaneously, cultural stories and ‘legitimate’ truths reinforce ideas of personhood and, most especially, what it means to be human.
The principles of modernity ensure that species-membership remains very tightly controlled, as has been argued by race scholars for many decades, however, this issue is yet to be properly recognized as central and critical for disability. Scholars such as Alison Kafer, Dan Goodley, and others (Goodley et al., 2012; Goodley & Runswick-Cole, 2013, 2016; Goodley et al., 2016; Goodley & Tregaskis, 2006; Kafer, 2013) are starting to interrogate more overtly the question of species-membership as it applies to people outside the spectrum of ‘normalized ability.’ Other key tenets of this worldview are expressed in the concept of human exceptionalism (or the ‘chosenness’ of one particular group over another), and very specific ideas of divinity and power. Note, that the religious basis for modernity must also be kept distinct from contemporary or living Judeo-Christian beliefs, as it is a particular sort of churched religion, hierarchical and with strict doctrines regarding power and authority, that has been absorbed, corrupted, elevated and, ultimately, informed the development of secular, modern, ‘Western’ societies.
To argue that modernity, which includes modernization, Westernization, globalization, industrialization, and so forth, is essentially underpinned by Judaic-Christianity, is to recognize that the laws, moral codes, institutions, public rituals, and other symbolic elements that are culturally privileged within Western-dominant societies are of explicit theological origin. In the transition to modernity, as argued by Peter Berger, the theological ‘architecture’ or symbolic power arrangements that informed the various institutions with which we are now familiar (such as law, medicine, governments, families, and communities) were transferred directly into secular modernity (1967, p. 47). He calls these plausibility structures. Furthermore, because this origin has continued to orient Western ideologies, the power relations inherent in the transmission of these ideologies are reproduced whenever a Western philosophy or institution is distributed via globalization. This may be why health and educational facilities, political-legal structures, and similar, can only retain a small margin of cultural variance, regardless of the timing or mechanisms of their distribution. The hegemonic (or totalizing) enforcement of the key elements of these ideologies, and the consequences of their acceptance, can subtly undermine (and eventually, eradicate) a person or community’s ability to hold plural and contradictory commitments. This is colonization: not just historical, but contemporary, active colonization.
Such prescriptions are hegemonic, and persist, following Antonio Gramsci’s thinking, through the re-articulation and re-inscription of historical-cultural representations, despite the fragile and emergent resistance that might be mounted against it. Whilst resistance is significant, it does not necessarily dissolve the oppression. Cultural relativism, which can stand as a contemporary example, does not, despite the best of anthropological intentions, attend to the dominant narratives which locate racialized representations of religion and culture within an evolutionarily-loaded, and thus, hierarchical, relationship with modernity and progress. Cultural relativism suspends the discussion on power by subverting the power narrative (see Rabinow, 2011). Similarly, the disability discourses, social movements, models, and attempts to disengage social, cultural, and historical norms are somewhat destined to be informed by rearticulated and antiquated representations of difference and fear until these are confronted and disrupted.
The disability movement, which is an umbrella term for a cluster of approaches to securing citizenship within modern societies, has predominantly followed the social model of disability, which holds that societies are disabling through the socio-political constructions of disablement (see Lang, 2001a). The social model originated as a response to a medical model that was focused predominantly upon the functional, physiological and cognitive abilities of an impaired individual. Whilst the social model incorporates historical analysis, power relations and thus, social justice themes in its rhetoric, it has been critiqued as incomplete, and ultimately, as failing to achieve real social change (Dewsbury et al., 2004; Gabel & Peters, 2004; Nussbaum, 2006). Like earlier approaches in critical race and indigenous studies, anthropology, and feminist research, the social model has been characterized by an insistence on ‘insider’ representation only, which is a consistent phase in all the above-mentioned fields for the purposes of reclaiming the psychic, physical, social and emotional space that has been denied or misappropriated. This type of shift has the initial effect of taking back power from the historically dominant, colonizing, forces that have been active within our societies; however, it cannot easily shift power relations in any space where the collective is fundamentally unwelcome. Access also has to be granted from within the citadels of privilege, so to speak, referring to those privatized spaces – of exclusionary design, of academic elitism, of consciousness, or nationalistic construction – where hospitality is denied. To put it bluntly, outsider allies may be able to usefully conduct educational initiatives at sites that are inaccessible, deliberately elevated, and problematically exclusivist.
With this in mind, it appears that what is needed now is collaboration in relationships, in order to negotiate the complex power relationships that have not been successfully dismantled during the social model phase. A key aspect of this is the movement away from a preoccupation with inscribing new boundaries and divisions, pursuit of partnerships that can overcome discontinuities between paradigms that appear mutually exclusive. To cite Zillah Eisenstein: “This means that differences will not be silenced in some hierarchically privileged order against a singular standard, or set up oppositionally against each other” (2004, p. 187). Decolonization projects need to operate at multiple sites, and with many voices engaged, in order to validate and overcome embodied marginalized positions. Just as Barbara Cameron (1983) pointed out, in the context of race, that it was not just up to persons of color to teach white folk about persons of color, nor should the project of teaching ‘out’ disability fall exclusively on those with disability. Lang also frames his critique in this way:
Oppression is often of an unwitting nature. If oppression and discrimination were the sole factors in the creation of a disablist society, then conflict might be the most appropriate strategy to adopt. However, if as is contended here, fear and ignorance also provide a significant explanation to societal attitudes towards disability, then a more appropriate and pertinent strategy for the creation of a non-disablist society might be through the medium of education… Disabled people, in order to create a society which is indeed non-disablist and which secures effective, full citizenship, needs to foster and build alliances with their able-bodied peers, and this is best achieved through consensus building and education (2001a, pp. 30-31).
Bodies, Monstrous and Divine
In order to engage with the process of decolonizing the field of disability studies, one must nonetheless begin with historical exegesis, in order to identify the persistent representations that have been sustained into the contemporary era. Disability is an embodied, intersectional, and relational category, for as David Mitchell writes, “diverse embodiments coexist in racialized, sexed, gendered, classed, and disabled bodies simultaneously” (2015, p. 4). The concept of embodiment overturns and disrupts both the social and medical models, in that the medical model pays too much attention to the body, and the social model, not enough (Siebers, 2008, p. 25). Whilst (as Siebers argues) the next step for disability studies is to innovate a theory of complex embodiment that values human variation, this requires engagement with the socio-historical perspectives on whether there is the possibility for such a thing as human variation, as afforded by the foundational symbolic architecture which underwrites modern societies. Whilst there is certainly a privileging of individuality within the human register, and an emphasis on perfection, often through medicalization in various forms, the spectrum of socially permitted human variation still appears to be very limited. Is there room for such a possibility, or are there still two distinct concepts that have been separated from one another – human and variation?
To properly grasp how these ideas have been sustained and yet, adapted, to become the slightly twisted, quasi-theological set of social scripts we use today, they need to be traced through the medieval period in Europe (a time when the ideologies of the ‘West’ began shifting from geographical to conceptual), through the Age of Exploration, and well into the modern period, as they informed the processes of colonialist expansion and ultimately, the ideologies of modern, Western societies. Turner and Oswald both detail the historical subsumation of what we would now call disability, under the headings of deformity and monstrosity, contrasting this initially with the Greco-Roman categories of the ‘ideal’ and ‘grotesque’ bodies that are put forward by Davis as precursors to ‘normal’ (Davis, 1995, pp. 24-25; Oswald, 2010, p. 2; Turner, 2006, p. 4). Whilst both the Platonic and Aristotelian notions of ideals are certainly salient, elite philosophical ideology was only a part of the Greco-Roman ideal. The concept of an ideal body may be a divine body, however deformed or unusual bodies have also been constructed across cultures as divine, including within Greco-Roman contexts. Sometimes these bodies were conceived of as monstrous, and sometimes as divine, or blessed. This dual framing reveals the transgressive spiritual power that different bodies have long been thought to possess, and the fear and awe provoked by these in equal measure. For instance, children with Down syndrome have historically been called ‘angels’, blindness has been associated with prophecy, and intersexed or ‘third gendered’ children have often been revered (and feared) as manifestations of androgynous gods. As Lyz Lenz writes,
People have interpreted anomalies in babies as messages from God for centuries. Sixteenth-century surgeon Ambroise Paré told of a woman who birthed a child with wings, a horn and a single foot as a sign of the misfortunes that were to come when Pope Julius II waged war against King Louis XII. The ancient Egyptians revered dwarfs as earthly representations of the gods Bes and Ptah (The Guardian, 2015).
Medieval historians, in their attempts to capture pre-modern worldviews, have certain artifacts at their disposal, among these, the world maps and illustrated manuscripts which depict the geocentric organization of the cosmos as populated by humans and divine beings. However, there are also depictions of the beings that existed on the edges of God’s creation which, prior to the Age of Exploration, included what we would now call monsters. Monsters, as defined by Dana Oswald, are outliers within a race or ‘kind’, whether human or animal: the monster is always defined by the normative (2010, p. 2). The depictions of the monstrous both articulate the fear of the loss of corporeal integrity, and simultaneously allow that fear to be quieted and dissolved, by confirming the normative (Kim, 1997, p. 40). As Asa Mittman argues, the monsters, half-human hybrids and dragons were just as essential to the cosmology as the angels and God, as the “universal spectrum was broad enough to contain at one end holy perfection and at the other the most wretched and abject, the vile and the absolutely evil” (2006, p. 5). The Marvels of the East, for instance, which was a text that first appeared around the 4th or 5th century, laid out the characteristics of the others, the strange, and the monstrous beasts that lived on the perimeter of the known world (Mittman, 2006; Oswald, 2010). Sources for this composite text have been traced to St Augustine of Hippo, Isadore of Seville, Virgil, Pliny, and others, which backdate the discourses on monstrosity at least 2000 years.
As Oswald observes, when the humanness of a body is inscribed by such representations, it is hierarchically scaled; the monstrous occupies a difficult middle ground between rational humans, and senseless animals (2010, pp. 3-4). This is precisely why Nussbaum’s three unsolved problems overlap, as according to the prescribed standards for discerning rationality (present from at least the classical period, and reinforced at the birth of the modern age), none of her three types of persons are necessarily categorized as human. These problems, which incorporate the same issues, and are categories of marginalization held together, as exclusions from social justice, are therefore intersectional, with each sphere impacting upon the others. By way of illustration, the intersections of race and disability, as conflated in the idea of the monstrous, are connected by references to the inside and the outside of the approved ‘human’ group, to the internal and external locations of the sacred, and geographically, to the boundaries of the known and the unknown world. In the context of early European normalcy, the construction of human exceptionalism was assigned to a single human group who were denominationally Christian, and God’s creation (and all of theologically prescribed history) was located in Britain and Greater Europe. Take, for example, the histories Geoffrey of Monmouth (circa 1130CE) constructed for early Britain, as described by Jeffrey Cohen.
In the Alexander romances, monsters named Gog and Magog guard the gates of Eden against human return. The island of Britain here simultaneously becomes New Troy, Canaan, and paradise… Brutus became through Geoffrey’s account the founder of Britain, but he and the giants that he conquers are described only to provide the heroic base on which the glory of King Arthur could be erected… Geoffrey’s achievement was to bestow on the Middle Ages a monarchical body through which England dreamed its own prehistory and inhabited it as if it had always been home (1999, pp. 35-36).
The Britons become the Israelites in Canaan by his pen, however, Geoffrey’s aboriginal monsters, those giants that are killed by Brutus in the founding of the nation, are violent, murderous, sodomites; inept and animalistic, devious and excessive. Furthermore, Geoffrey makes room for the monstrous offspring still born in the world of this time: “Sexual mother, rapacious incubus, and infant monster are the vertices of an unholy family triangle that obscenely contrasts with the model medieval family of Virgin Mother, sexless Holy Spirit, and sinless divine Son” (p. 53). Turner links this cultural-religious frame to disability, noting that by the 16th century,
‘Monsters’ and other anomalous bodies were significant social metaphors, providing a means not just for conceptualising certain characteristics that would now be termed disability, but provided a critique of politics, religion and morals… the primary concern of pamphlets detailing monstrous births was not with the embodied reality of the severely disabled children described, but with the social, religious, political or moral messages that might be drawn from such births (2006, p. 4).
Geoffrey was not the only scribe, nor the first, to engage in this kind of nationalistic re-Creationism, however, what is significant is that his writing reflected a new view of time, purpose, and teleology (an ends-oriented perspective) that was unique to Christian thought around the 12th century (see Gillespie, 2008). In other words, salvation could be linked to human lives in a linear way for the first time, which makes Geoffrey one of the first to capture the idea of ‘progress’ – for societies and for individuals. Ultimately, this sets up comparatives that were previously unknown and establishes the very specific kinds of hierarchies and separatist, elite, ideologies that have become problematic in the contexts of modernity.
In a rather simplistic manner, the maps, manuscripts, and histories originally delineated between God’s creation (or the human world), and that which lay beyond it. However, by the 15th century, Christian cosmology had developed to include demons, devils, and a fully realized Devil (see Peters, 1978). This is important, because these monsters then became absorbed into a new, rigid, classificatory system, and were reframed as demonic, just prior to the Age of Exploration, wherein those beings ‘at the edges of the world’ would be discovered, and their humanity, questioned. Western man was self-identified as superior, and by the 16th century, this explicitly Judeo-Christian, biblical description of God’s creation, situated in the greater European West, and inhabited by humans who were privileged by God, was the normative view. In accordance with this norm, the discourse on monsters became explicitly racialized through the physical processes of world exploration, raising serious philosophical questions as to the humanity of the ‘others’ that inhabited the newly discovered lands. America’s Christian settlers, for instance, were alarmed by the presence of Indians and could not understand how it was that they even existed: ‘The Bible, they were certain, recorded the creation of all mankind, but it never mentioned the Indians’ (Murrin, 1999, p. 31). Early explorers overtly queried the species-membership – or the humanity – of the people they encountered, finally resolving this by determining that these dark-skinned Descendents of Ham (son of Noah) were able to become human, if they could be saved from sin.
The classification of races that developed in the 18th century, inspired by social evolutionary theory, extended the demarcation between the cultural and the natural further. By the early 19th century, the idea of the noble savage was recovered, along with the idea of the wild man, as part of the romanticized turn (especially within anthropology) to the antique notion of a Golden Age of peace and harmony. As Stephen Horrigan writes: “Descriptions of foreign people as noble savages, living a happier and more virtuous life beyond the bounds civilization appear in the writings of both Homer and Herodotus” (1988, p. 51). In other words, Greco-Roman mythology was retrieved as a solution to species-based racism, however, it simultaneously damned the racialized ‘other’ to be forever conflated with the pre-modern, pre-literate, uncivilized early Western civilizations. Not only does this evolutionary thinking persist today, in the discourses and representations of indigenous peoples as tribal, primitive, and uncivilized (culminating in on-going oppression), but it can also be identified in ‘development’ discourses. David Hollinsworth, commenting on Australian Aboriginal conditions, notes that: “Differences flowing from history continue to mark Indigenous people as ‘other’ or the object of pity or shame” (2013, p. 602). Furthermore, disability in indigenous contexts barely features in scholarship, or in policy debates, highlighting that whilst race and indigeneity have continued to be progressively re-thought in terms of personhood, culminating in a number of substantial shifts over time, the legacies of slavery and colonial categories still await displacement
What has persisted, as defined and developed through the mechanisms of philosophy, are set prescriptions regarding human divinity and human exceptionalism, which extend to species-membership and species-specific privileges, and involved set discourses regarding perfection and purity. With the rapid advancements in the natural sciences and medicine, imperial expansion, resource acquisition, and the industrialization that characterized the three centuries that followed, the chosen have become as gods, fuelled by increased power, faith in progress, medicines that promised immortality, and the spoils of global domination – at the expense of ‘the rest.’
Humans and Others
Whilst humans grapple with socially constructed insider-outsider categories of who will be accepted as human, and under what conditions, disability remains awkwardly invisible. In her analysis of the representations of disability in familiar fairy tales, Beth Franks makes the observation that, for those with disabilities,
the visual cues that identify them as different also carry the cultural information that they are to be not-seen. Mothers tell children not to stare at someone with a disability… In a feat worthy of a magician, the mind simultaneously erases people with disabilities from view and closes the gap that has been created… The enchantment is cast by our culture, which paradoxically insists we stare with condemnation at those who do not conform and instructs us to look away from the spectacle (2001, pp. 254-255).
Framed as both a ‘lack,’ and simultaneously, something to be feared, such reactions co-opt pre-Enlightenment ideas of a powerfully supernatural threat. Davis (1995, pp. 12-13) calls this the ‘Medusa-like gaze,’ by which an observer can themselves become disabled, recalling once again the ideas of contagion and quarantine, or sin-by-association: “What is repulsion after all but the personal, internalized version of the desire to repel, repress, extroject, annihilate the object?” This entwinement of disability with symbolically loaded scaffolds of meaning is identified by Michalko as a persistent, underlying feature of how disabilities are considered.
Disability has been conceived of as being brought on by disease, accident, or flawed genes or curses and other supernatural phenomena, or it is retribution for wrongdoing often going back generations. Disability is natural only insofar as it is seen as the accident of nature or the intention of the supernatural (2002, p. 5).
Furthermore, the discourses on disability (and often, infanticide) found in modern cross-cultural contexts can appear as pre-modern, ‘primitive,’ or in some way anti-humanistic, when contrasted with the politically correct positions on inclusion and humanity proffered (though not actually embodied) via Western ideologies. Modern framings are generally claimed to be explicitly secular, and yet are not. In India for example, especially in rural areas, conceptions may be extremely diverse: the causes of disability may be attributed to black magic, a curse, or karma; or conversely, the person may be viewed as a blessing, possessing extraordinary powers and gifts (Lang, 2001b, pp. 297-298). Early Western constructs were the same, shifting between uncertainty, and the ascription of malevolent intent to the appearance of such an infant, such as described by Nancy Scheper-Hughes.
Physically stigmatized infants may be rejected as “witch babies” or as “fairy children.” Among the rural Irish of West Kerry, old people still speak of the birth of changelings, deformed creatures that the fairies would leave overnight in exchange for the healthy newborn that should have been in the cradle (1990, p. 302).
In the words of Davis, the disabled body is the ‘familiar gone wrong’ – unhealthy, and unclean:
The general metaphor here continues to be a notion of wholeness, order, clean boundaries, as opposed to fragmentations, disordered bodies, messy boundaries. If people with disabilities are considered anything, they are or have been considered creatures of disorder – monsters, monstrous (1995, pp. 141, 143).
To illustrate the consistency of such views across time, it is helpful to consider the perspective of an American, Christian, modern, mother and her account of reckoning with her daughter Penny’s diagnosis of Down syndrome for the first time. Amy Becker (2008) writes of being haunted by the cries of approval for another newborn – “She’s perfect!” – overheard in a nearby hospital room, shortly after learning of her daughter’s condition.
Without even knowing it, my mind held a theological grid, a mental chart of how the universe worked. The only thing that chart told me about Down syndrome… was that it was a manifestation of sin in the world. By that, I don’t mean I thought Down syndrome was immoral, but I did think that, because the entire cosmos was out of whack, bad things happened. Bad things, like malaria, and hurricanes, and extra chromosomes. And if having an extra chromosome was on a par with disease and destruction and other things that are not of God, what did that say about our daughter? […] It seemed that, even by God’s standards, Penny was in another category of human being altogether – not merely ‘fallen,’ like the rest of us, but defective, a mistake (2008, p. 9).
Becker admits that even as she was having these thoughts, she also recognized that Penny was ‘a gift’ who would encourage her to conceive of sin, humanity and divinity, eventually, in different terms. In the search for meaning, Becker, like many other mothers, queries numerous possibilities as to what went ‘wrong,’ or in what way the infant represents some kind of punishment; albeit socially, medically, or theologically based. Historically, the blame for a child’s disability has fallen on the mother, the ‘feebleminded’ mother, as Gail Landsman writes, who has engaged in ‘immoral procreation and thus, passed on defective genes (2009, p. 16). Mother’s know this: as Siebers writes “Ask a pregnant woman whether she wants a boy or a girl, and she will reply, like clockwork, ‘I don’t care if it is a boy or a girl as long as it is healthy’” (2008, p. 187). The ‘success’ of the child is the responsibility of the mother, from conception to birth; likewise, the blame and guilt are hers to negotiate, generally alone. Socially, free choice in terms of pregnancy and birthing decisions are organized around safe-unsafe and good-bad binaries “which feed into a pervasive social obligation to reduce one’s risk to society and obliges women to make the safest, most orderly and morally appropriate choice” (Bryant et al., 2007, p. 1200). By acting to ‘protect the baby’ and minimize risk women are thus positioned as ‘good’ mothers, though only if the infant birth does indeed arrive ‘perfect.’
In the words of Soponaru and Iorga (2015, p. 59), the reaction to a ‘bad birth’ can be one of ‘irreparable loss,’ sometimes leading to abandonment of the child entirely. They write that those with disabilities are stigmatized, and thus, not entirely human, which has the snowballing effect of clustered discriminations by which personhood is reduced, and which the classification of the person as ‘dangerous’ is reinforced.
Every day, we use terms that designate specifically a stigma –such as retarded, daft – and we turn them into a source of images and metaphors; most of the times we no longer perceive their primary sense. When we notice an imperfection, we are prone to assume a whole series… In this situation, we perceive both [the] deficiency and [the] reaction as a price paid for something… which justified – in our eyes – the way we treat the person (2015, pp. 61-61).
Scheper-Hughes, in her cross-cultural analysis of disability framings, reveals mother-blame, stigma and fear-based reactions to be somewhat ubiquitous. She writes that:
The physically different infant challenges the tentative and always fragile symbolic boundaries in many traditional societies between human and nonhuman, natural and supernatural, normal and abomination (1990, p. 302).
The Nuer of Central Africa, for example, set apart deformed infants and categorize them, not as human children, but as hippopotami, anomalous and dangerous, that go ‘back to the river’ from whence they came. In the Sierra Madre mountain in Mexico, the belief is that to gaze upon a deformity can cause a number of magical afflictions, which provoke ‘allowing’ the infant to die as a kind of public health measure. Another of her examples describes the practices of the Mehinaku of Amazonia, who call a ‘forbidden’ child a kanupa, which is a source of great shame to its parents.
The deformed infant is reified; it is a ‘thing,’ a diseased object, not a human being. Therefore, the Mehinaku do not say that they ‘kill’ or that they ‘destroy’ such infants. Rather they say that they ‘throw it away.’ Nor do they say that they ‘bury’ the infant in a premature ‘grave.’ The ‘forbidden thing’ is ‘put in a hole’ and covered over with dirt. Graves are for real infants; ‘holes’ are for nonhuman kanupa… (pp. 302-303).
Landsman also discusses such examples, noting that (in Africa) copulation with a bush spirit in Dogon communities, and incest among the Bantu, are the common explanations for disability; in Mozambique it is a ‘bad spirit’ brought from the wife’s family (2009, p. 15). She cites another example from Taiwan, where Chinese parents “interpret obviously disabled children as manifestations of their own wrongful deeds in this life or a previous cycle of incarnation” (pp. 15-16).
Scheper-Hughes identifies a crucial difference between the approaches to disability and deformity in small-scale traditional contexts, and the stigmatization of disability within modern industrialized societies, which she calls pathological (p. 301). She is pragmatic in her analysis, noting that
throughout human history… women have had to give birth and nurture children under environmental conditions and social arrangements unfavorable to infant and child survival… [therefore] cultural practices of infant care tend to be organized primarily around health and survival goals (Ibid).
Just as in Westernized modern societies, the infant’s chance of survival is weighted against a social norm, and human status granted, or not, in accordance with this. Scheper-Hughes distinguishes clearly between the pragmatic goal of allowing a disabled infant to die, and the Westernized, medicalized practice of saving the child at all costs, which is based on the premise that all children are wanted, all births are intentional, and all life is precious. Although the theological orientation of this is not difficult to identify, such topics are rarely debated in properly cultural terms. As she writes:
A medical rescue that is indifferent to the social and economic conditions to which an often unwanted infant is returned might be seen as another form of iatrogenesis… It is possible that our current epidemic of child abuse and battering may be an unintended and unfortunate side effect of our modern preoccupation with producing ‘excellent,’ ‘beautiful,’ ‘talented,’ indeed idealized and ‘perfect’ children (p. 305).
Using the example of urban Bariba witch children, Scheper-Hughes adds that corrections (albeit ritual or medical) may remove the outward signs, but not necessarily the source of an afflicted child’s stigma and uncanny power. Comparatively, we might consider the secrecy around infant genital ‘corrections’ within modern, Western societal contexts, the desire to ‘pass’ in gendered, sexual, and racial contexts, and the danger and stigma associated with ‘invisible’ disabilities, such as mental health diagnoses. This is strong theory to contemplate, for even though Scheper-Hughes is not advocating the social value of a right-to-life ethic, but rather, questioning its cultural origin, she is nonetheless provoking engagement with a glaring contradiction apparent in the construction of the ‘Western normative.’ A differently marked body (or mind) has not, and is not, generally conceived of as fully human, so what is contradiction between the claim, and the reality, that keeps the ideals of human, and variant, apart?
Citing Ashley Taylor, Goodley et al., write that “being born human is not enough for an individual to achieve the status of person” (Goodley et al., 2016, p. 3; Taylor, 2013). Personhood, in social terms, is dependent upon certain socially constructed norms, dictating that one must function in a particular way (see Siebers, 2008, pp. 8-9). Moreover, such norms are subtly influential in the successful recognition of citizenship and the unquestioned privileges that this may afford. These norms are, however, confused, as they are antagonistically informed by a combination of both pre-modern and modern symbolic structures. On the one hand, there is a rich tapestry of ideas which load embodied differences with a mixture of privilege, awe, disgust, and prohibition, as appropriate to a small-scale traditional worldview in which survival is often pragmatically assessed. Uncensored social reactions tend to fall into this category. On the other hand, there is a modern social consensus on the ‘appropriate’ moral reactions to disability, social policies that do just enough to give the illusion of approved species-membership and citizenship, and the elevation of reproductive contributions to society that are explicitly theologically derived. In particular, the decree that Thou Shalt Not Kill, as linked to the achievement of personal salvation and ethically good conduct, results in the idea that simply keeping everyone alive, regardless of their quality of life, is sufficient for a society to function. Children, provided they are ‘perfect,’ are privileged above all else, and human variation, as Scheper-Hughes writes, becomes viewed as an illness that can be treated medically, or aesthetically altered through surgery, or in some way made to be ‘normal’ (1990, pp. 305-306). When this is impossible, such ‘matter out of place’ should be removed from view. This exemplifies the contradiction between so-called humanistic concerns collectively held within modern, Westernized societies, and the embodied, lived experience of the disabled person’s constant war with normalcy. Scheper-Hughes has subtly, but effectively, pointed to the lie.
In short, individuals within modern, large-scale Westernized societies continue to respond to people with disabilities with a logic that would naturally lead to ethno-eugenics in a different cultural context, and yet, this socially and ethically unacceptable view is both concealed, and vehemently denied. This embodied reaction, so visible whenever a child is born ‘imperfect,’ contrasts radically with the codified ‘public’ social norms that dictate that individuals actively support the shift towards respect, recognition and comprehensive citizenship, support and rights for those with disabilities. It is a begrudging acceptance, verging on tolerance, and certainly not evidence of the embracement of human variation. What has emerged as the ‘Western’ norm is a clear-cut division between the monstrous (marginalized, different, deviant, not-quite-human, wrong, bad, unacceptable), and divine (normative, human, ‘pure’, right, good, acceptable). Tobin Siebers’ final word on the issue of extending human status is powerful, and shocking – he writes that at this time, there is no public agreement on whether people with disabilities, or children of people with disabilities should have a future (2008, p. 196). Whilst the arguments from history and cross-cultural analysis might frame this as this valid in pragmatic, survival terms, for supposedly modern societies with a wealth of resources to provision support, this kind of ‘compassion’, as Hughes notes, is a ‘hair’s breadth from barbarism’ (2002, p. 581).
Such framings continue to affect people with disabilities in profound ways, highlighting a significant obstacle which can act to stall attempts to secure social justice. Culturally-contextualized debates on human rights, multiculturalism, religious pluralism, diversity, and so forth are trapped in a dialectical relationship with these prescriptions in ways that reinforce the relations between the oppressor and the oppressed, over and over. To draw on Kafer (2013), there is an overall haste to project grim imagined futures on those with disabilities (despite resistance from the disabled persons themselves), and yet – it is a grim construction from an ablest perspective. As Goodley et al. write, the disabled child is still a monstrous child, in a world hostile to their existence. They are yet to be recognized as fully human.
While we might hope to comfort ourselves by imagining that the image of the monstrous/disabled child is now no more than a historical relic, a contemporary Google search for ‘disabled child’ and ‘monster’ reveals, within the first two pages, the story of a father who describes being in a restaurant with his disabled son who is branded a ‘monster’ by another diner (2016, p. 2).
How, then, will we learn to re-conceive our ideas of humanity? Normalcy, as configured through a Western ablest and socio-culturally determined lens, remains a significant obstacle for overcoming oppression, and achieving social justice. Reframing humanity, as emphasized by a number of scholars (Goodley & Runswick-Cole, 2016; Goodley et al., 2016; Kafer, 2013; Michalko, 2002; Siebers, 2008), is urgent – our inherited metaphysical baggage is far too limited, and the claim that modernity is secular, inclusive, diverse, and humanistic is dishonest. To decolonize, therefore, is to humanize with a new mandate: to drop the façade that prevents a proper reckoning with the deeply-held cultural assumptions which perpetuate the lies, to realize there is no normal, no purity that can or should be achieved.
However, the symbolic framing explicated here remains sequestered through its denial. It is potentially a source of shame and, thus, is not overtly taught with the aim of educating individuals out of what are largely unconscious marginalization practices. Such a predicament echoes the historical denunciation of accountability in the reckoning with oppression via race, colonialism, and indigeneity. Species-membership is not privileged. If it is then have we not strayed radically from the so-called foundations of modernity in which scientific rigor is claimed as an anchor? In social and philosophical terms, how difficult would it be to begin a conversation that might redeem a truth from the lie? The future of disability, from the perspective of decolonization, needs to begin with a type of education that can conceive of human bodies and embodied experiences differently, and in ways that enable the concepts of human variation to be considered together. To conclude with Oswald (2010, pp. 206-207):
People’s bodies and social positions are capable of change, of transformation… Just like the monstrous body, the human body that does not fit neatly into existing categories… not only disrupts the social… order, it reveals the gaps and flaws in the architecture of society… In truth, no human body or identity fits completely into the niche created for it… Bodies resist categories – and if that is the case, then we are all monsters.
Acknowledgements: I would like to thank Cushla Dargan for her signficant contribution and assistance as a co-researcher of this paper.
 This approach, also put forward by Amartya Sen, is based on a social minimum that focuses upon human capacities; defined as those things humans can do and be, informed by an intuitive idea of human dignity, and an idea of the human as a social animal, rather than as defined by rationality (Nussbaum, 2006, pp. 70, 92). The difficulty I identify with Nussbaum’s project, though I am supportive of her goal, is that by starting her analysis with 17th century philosophy she delimits her definitions of human to that particular time period. I would argue that the three categories of persons (impaired, othered, non-human) are already excluded permanently from species-membership by this time in modern history, and that this exclusion has been maintained as a part of the now-dominant Western ideology.
 The comprehensive literature on the intersexed-as-divine, on the hijira and eunuch priests (including the galli of Rome), are illustrative of transgressive bodily difference of the kind that has historically attracted both repulsion and awe (see O'Flaherty, 1980; Roller, 1997; Roscoe, 1996). Sarra Lev (2004) provides examples and discussion of early Judaic thought reconstructing such ‘sexless’ bodies as monstrous, which has directly contributed to the strong classification systems regarding purity and impurity that are typical of modern societies. Siebers also observes that there are two questions asked immediately upon the birth of a child – the first regarding its gender, and the second is about the number of fingers and toes, which links health, reproductive abilities linked to genital integrity (the lack of which signals no ‘reproductive future’), class, and group status or social identity (Siebers, 2008, pp. 187-188). A ‘transgressive birth’ can transform and obliterate the future entirely, provoking other questions as to the purpose and meaning of the experience, the life of the child, and the supernatural or theological loadings that this may attract.
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Amba J. Sepie is completing her doctorate in the Department of Geography at the University of Canterbury, Christchurch, New Zealand, where she also teaches in the areas of Anthropology and Sociology. Her research and publications are focused on decolonization in the intersecting areas of health and medicine, education, religion and spirituality, and especially, academic and social resistance to Indigenous ways of knowing, being and healing.