Introduction
Recently in this journal, Thorneycroft (2024) proposed a conceptual solution to the oft-debated question of the social model’s impairment-disability binary, which he described as a ‘screwing’ of the model. For reasons founded more on politics than philosophical rigor, social model architects chose to position impairment as virtually irrelevant to the question of disability inequality, relegating it to the realm of the ‘personal’, while also denying its embodied effects (Thomas 2007). The idea that impairment could exist as a presocial reality, untouched by discourse, which only found political meaning when overlaid by oppressive material and cultural aspects of society, was to some extent based on a similar understanding of the relationship between sex and gender. Drawing on the work of Tremain (2001; 2002), Thorneycroft (2024) correctly notes that the sex-gender binary has become ever more unsustainable over recent decades, therefore destabilizing the already shaky ground of the social model’s own central dichotomy. Tremain (2001) expresses the problem as follows:
…analogical arguments that disability researchers and theorists make from ‘sex’ not only reinstitute and contribute to the naturalization and materialization of binary sex’, but additionally, ‘these arguments facilitate and contribute to the naturalization and materialization of impairment. Disability is not the product of culture, and impairment is not the product of nature, because disability is the means through which ‘natural impairment’ is produced and established as natural, as prior to culture, and as a transhistorical and politically neutral surface upon which culture acts (Tremain 2001, 631).
Tremain (2001) demonstrates that, as is the case with sex, the notion of impairment as a purely ‘natural’ phenomenon quickly shows itself to be incoherent, as its very existence must rely on cultural designations of normalcy in morphology and function. Thorneycroft’s (2024) suggested solution is to collapse the concepts of impairment and disability, which become synonymous as ‘ideologically loaded categories populated with expectations about human attributes’ (p. 296). In this sense, disability is no longer the primary locus of social oppression but instead takes up the mantle of the discursive product which is impairment. This seems to narrow the already awkward space for the experience of embodiment afforded by social model thinkers. Analysis of social oppression relating to disability, in Thorneycroft’s (2024) formulation, then shifts to studies of the unambiguously discursively produced phenomena of ableism and disablism. Thorneycroft (2024) summarizes his position as follows:
The social model conceptualizes disability as a form of social oppression, but if impairment was always already disability, and if impairment and disability become identity categories (as I argue, and as evidenced elsewhere in contemporary scholarship), other terms need to be utilized, and studies in ableism and disablism is an already developed (and developing) area of study focusing on the oppression against disabled people (Thorneycroft 2024, 295).
Of concern to us, however, is how this formulation appears to leave the actual, lived body-mind nowhere in sight. Difficulties with the social model’s elision of embodiment are not new. Since the 1990s, the social model has come under increasing criticism, particularly from disabled feminist scholars, for ignoring the facts of functional limitation, pain, and fatigue in the lives of disabled people (Thomas 1999; Thomas 2007). Here too, it is the impairment-disability binary which is the problem, shining a bright light on ‘disability as social oppression’, while sidelining the visceral, everyday reality of inhabiting a body-mind which functions differently to others. In this critical response to Thorneycroft’s (2024) propositions, we argue that while his critique of the social model is correct – and not new – the solution is one which risks compounding, rather than addressing, the elision of the lived reality of impairment in the lives of disabled people.
Interrogation of the sex-gender binary dates back to the early 1990s (Butler 1993), with its implications for disability later examined in a landmark contribution by Williams (1999). Thorneycroft (2024) does not draw on this contribution, which contributes centrally to our argument. To chart this discussion and situate our response to Thorneycroft’s (2024) proposal, we will begin by exploring the basic ‘somatic impasse’ created by the social model. Thereafter, an explanation is provided for how, in our view, Thorneycroft’s (2024) move toward reducing disability to discourse in his ‘screwed’ social model fails to address its elisions. To give life to our position, we then offer narrative accounts of the influences of disabled embodiment in both of our lives, showing up how the conflation of impairment with disability reinscribes the problem of the ‘vanishing body’ (Watermeyer 2013). This leads onto the final discussion and conclusions, in which we argue for a position which combines critical realism (Shakespeare 2006; Shakespeare 2014) with the phenomenological and relational approaches of disabled disability studies scholars willing to contemplate their own embodiment, which together can rescue the lived body-minds of disabled people from what has been termed ‘discursive essentialism’ (Hacking 1999; Hughes and Paterson 2006).
The Social Model and the Vanishing Body
From the outset, the social model’s exclusive focus on material barriers to participation, pivotally important though they are, was destined to marginalize the embodied experiences of disabled people, denying the elemental, lived phenomenology of the body (Merleau-Ponty 1962). The model was designed to capsize a traditional medical view which reduced inequality to structural or functional disorder, yet it inadvertently endorsed biomedicine’s mandate for evaluating and managing the body-mind. The unsustainable claim that disability is purely contextual implied that impairment was, as purely, biological (Hughes 2002; Thomas 1999; Watermeyer 2013). Thorneycroft (2024) is entirely correct in reiterating that there is no ‘natural’ or ‘presocial’ body, as biomedicine’s dualist Cartesian foundations would have us believe – the irony of social modelist collusion with this regressive, decontextualizing position still startles. In their classic paper, Hughes and Paterson (2006) pointed out how the social modelist disregard of post-structuralism led to the embracing of irreconcilable polarities such as body and society, pain and oppression, therapy and emancipation, medicine and politics, and last but not least, impairment and disability, while closing the door to development of a proposed ‘sociology of impairment’ (Hughes 2002; Sherry 2016). Driving the point home, they describe the social model’s representation of the impaired body as a ‘dysfunctional, anatomical, corporeal mass obdurate in its resistance to signification and phenomenologically dead, without intentionality or agency’ (Hughes and Paterson 2006, 329). In response to the idea of some sort of pre-discursive, ‘natural’ body, Michalko (2002, 58) similarly retorts that ‘natural’ is, in fact, ‘the script of culture writ large on the body’. Notably, Thorneycroft (2024) is in full agreement here, as evidenced in the following quotation:
Being impaired does not constitute some natural fact, but rather cultural performance(s); ‘naturalness’ is constituted and (re)produced through a grid of performative acts that produce the body within the category of ‘impairment’. The genealogy of the impaired body is concealed, forgotten, and repressed under the ruse of ‘natural fact’ (Thorneycroft 2024, 293).
But while Hughes and Paterson (2006) and Michalko (2002) similarly object to the social model’s misguided position, unlike Thorneycroft (2024) their intention is not to relinquish the body to discourse, but instead to reclaim its palpable, consequential nature. While meanings associated with the body are discursively produced, we need to hold in mind that the body is not an idea to be considered, but an elemental, lived reality whose fluctuations impact profoundly on subjectivity, and are continuous with selfhood. Yes, the body is ‘out there’ in discourse, but it is also ‘in here’ in muscle, bone, sensation, and perception. Thorneycroft (2024) succeeds in addressing the conceptual contradiction in the social model surrounding impairment but runs the risk of even further narrowing the already awkward thought-space available for experiences of embodiment, which are mediated by the material nature of society, but not reducible to it.
Since social constructionist accounts provide only for shifting versions of reality, impairment becomes viewed as a function of culture, yet simultaneously nowhere to be found. Like identity, the body becomes something devoid of any intrinsic characteristics, instead composed of infinitely diverse and unstable repertoires. Constructionist approaches such as that offered by Thorneycroft (2024) succeed in wresting control of disability meanings’ from the dehumanizing scientism acceded to by the social model, thereby claiming victory over a ‘western conception of objective, individualistic, ahistoric knowledge’ (Gergen 1985, 272). While there is no doubt about the emancipatory progress of this step, the problem lies in the fact that all alternative accounts of disability offered by social constructionism are equally illusory. A strictly constructionist view allows the body to be rescued, for a moment at least, from biologism, but it is then immediately engulfed by the imperatives of deconstruction, evacuating it of all non-contingent meaning (Price and Shildrick 1998; Turner 2001). This is the barren ‘discursive essentialism’ referred to earlier, which is philosophically deft, but, in the view of a host of feminist disability scholars, falls well short of providing a validating mirror for subjective reality (Crow 1996; French 1993; Morris 1993; Thomas 1999; Wendell 1996). People living with the daily reality of disabled embodiment, such as the aforementioned authors as well as ourselves, are in our experience often bewildered at seeing their bodies dissolved away into nothing but their cultural signifiers.
Finding Solutions
In attempting to address this impasse, Garland-Thomson (1997) suggested a compromise solution which abandons the need for a consistent philosophical logic, in favor of personal empowerment and political expediency. She asserted that a ‘strategic constructionism’ and a ‘strategic essentialism’ are both needed by the disability movement, for different but related purposes. The strategic constructionist view is needed in order to launch a denaturalizing attack on a view of the disabled body as intrinsically damaged, undermining the individualizing and reifying influences of biomedicine. In this respect, she fully embraces a feminist position on the constructed body, as ‘a cultural text which is interpreted, inscribed with meaning, [and] indeed, made within social relations of power’ (Garland-Thomson 1997, 282).
At the same time, Garland-Thomson (1997) regards the strategic essentialist view as equally necessary in order to affirm the phenomenological and embodied reality of living a disabled body-mind, with its palpable shaping of motility, perception, sensation and cognition. She explains this two-pronged approach as follows:
Thus, a strategic constructionism destigmatizes the disabled body, locates difference relationally, denaturalizes normalcy, and challenges appearance hierarchies. A strategic essentialism, by contrast, validates experience and consciousness, imagines community, authorizes history, and facilitates self naming. (Garland-Thomson 1997, 283).
This may seem like conceptual hopscotch, but it serves to highlight how challenging the issue at hand is. While Garland-Thomson (1997) regards the constructionist critique of the disability category as crucially important in attacking cultural conceptions of normalcy – as does Thorneycroft (2024) – she also underscores how it tends to obscure the lived effects of identifiable difference, while destabilizing identity categories which make the experience of oppression collectively meaningful. The ascription of varying forms of body-mind difference is at the heart of medicalization (Shakespeare 2006; Shakespeare 2014), yet it is the specific, phenomenological nature of this embodiment that must be recognized as inseparable from the lived reality of oppression, and hence of identity and selfhood. In their articulate critique of the binaries of social model politics, McLaughlin and Coleman-Fountain (2014) demonstrate how the experiential narratives of young people with disabilities are deeply entangled with discourse – especially in the form of medicalization – yet never reducible to it.
Embodiment Makes Disability Different
An interesting comparison emerges here between disability and other identity categories associated with oppression, such as race, gender, sexuality, and ethnicity. In Garland-Thomson’s (1997) logic outlined above, a constructionist critique of these identity categories, along with their respective hateful imputations of one sort or another, is appropriate, effective, and has few negative side-effects. This is because these value judgments and other ascriptions associated with these categories are so palpably fictive, resting as they do upon pure stereotype with no contingent embodied reality. In the case of disability, especially disability which is severe, there is embodied difference which does not dissolve under the gaze of deconstruction. Furthermore, the types and phenomenology of these differences are infinitely diverse – there is no end to the variety of form and function of the bodies we call human. This fact – that disability differs from other identity markers by dint of diverse embodiment – has implications for understanding how systems of socially engendered disadvantage intersect with one another. This observation in no way undermines the foundational necessity of using intersectional analysis to make sense of disadvantage in the lives of disabled people, or of any other group for that matter; it also in no way implies any privileging of one identity marker over another. Yet, the point is that disability has a palpable and diverse phenomenological ‘internal life’ to it which, unlike in other identities, both precedes and surpasses construction. Put simply, in the case of markers such as gender, sexuality, or race, one grapples mainly with the forces of malignant discourse, formidable and devastating though these have often proven to be. With disability, a similar grappling with imputations of inferiority rooted in discourse combines with the reality of a body-mind which, moment by moment, feels and functions differently to the bodies of those at the center of the production of culture. What this creates is a phenomenological gradient, shaped by social organization but not reducible to it, between those who live with impairment and those who do not. Yes, to be disabled is to experience the material and cultural world in a way which is different to those around you, but also to experience an inseparable difference in your own embodiment.
The monumental oppressions of gender and race are all to be found in the phantasms of discourse – to locate these anywhere else would be to collude with the essence of sexism and racism. This is not to imply that people who are not disabled do not have bodies, far from it. Instead, it is to point out how, in Hughes and Paterson’s (2006) terms, the disabled body ‘dys-appears’ in ways which others do not. What these authors mean is that differences in embodiment, as well as the significations which cluster around them, come into view both ontologically and palpably through the ongoing, inescapably carnal nature of being.
Thorneycroft (2024) picks up precisely this logic in identifying the contradictions in the Sex-gender binary, correctly pointing (along with Tremain 2001, and others) to how, in gender, there can be no body defined outside of discourse; the same is obviously true in the case of race. This is because there is nothing intrinsic about these bodies which might be implicated in their being set apart from any other; however, the case of disability is not that simple. In disability the extreme relativism and poor explanatory capacity of radical constructionism has very real implications, in the sense of either being incurious about, or erasing altogether, aspects of experience which are fundamentally influential in everyday life. Liz Crow’s (1996) critique of how social model thinking erased her experience of embodiment is, interestingly, just as relevant here to the elisions of constructionism, as she points to how her impairment has been seen as ‘irrelevant, neutral and sometimes positive, but never, ever as the quandary it really is’ (Crow 1996, 208). We attempt to give life to just such quandaries of embodiment in our own lives later in this paper, showing how we at times feel as abandoned by constructionism as Crow (1996) felt in response to the social model’s silence on her experience of impairment. In this, we concur with Charlton (1993) that postmodernism is an easy option for those experiencing normative health and function, but a luxury that chronically ill or disabled people can often not afford (as cited in Williams 1999). While fully embracing social constructionist critique of societal responses to disability at all levels, there is potential harm in deconstructing away one’s own embodiment, as it shears away ontology, and hence self, filling the resultant space with nothing but epistemological ruminations. In her philosophical account of the ‘minority body’, Elizabeth Barnes (2016) warns of the danger of inadvertently colluding with the assumption that the experience of impairment is one which necessarily brings ‘bad difference’, rather than what she refers to as ‘mere difference’. In response, our view is that to acknowledge the experience of embodiment is not to imply that it is good or bad, it is simply to hold space for the contemplation of its nature, whatever that might be.
Thorneycroft (2024) disagrees with Shakespeare’s (2006) position that the social model, due to its reliance on irreconcilable binaries, should be abandoned. But his solution to this problem is simply to take up one pole of the disability-impairment binary, ultimately reaffirming the social model’s basic dogma – that the experience of disability, with its attendant social inequalities, is entirely about social organization, and nothing to do with the body. To give more life to our position, we now present short accounts of our own embodied lives with disability.
Two Experiential Narratives of Disabled Embodiment
Brian
Since early childhood I have experienced the steady effects of degenerative eye disease, resulting in blindness. Now, those familiar with my work will be in no doubt at all regarding my conviction that social responses to my embodiment, including malignant discursive representations of disability and visual impairment, hegemonic ableism, the material organization of a barrier-ridden society, and the narcissistic human hatred of difference, have fundamentally shaped my life course, social destiny, personal well-being and experience of self (Watermeyer 2013). I have elsewhere devoted many pages to exploring this reality in my own life as well as the lives of others in the disability community. From the earliest moments of life with a congenital or acquired disability, selfhood is shaped by relationships which bear the reverberations of ableist assumptions which are often so elemental as to be invisible (Watermeyer 2001). The world of meanings, of discourse, builds our capacity to consider our own existence, occluding other repertoires of being. Further, it is true that blindness is deeply imbued with denigrating meanings driven by fear, which mean that an integral part of living with visual impairment is defending one’s sense of self from these imputations, that appear in forms varying from patronizing kindness to outright aversion (Hughes 2019). The point here is that, in my (and our) view, the effects of cultural and ideological responses to the impaired body-mind overwhelmingly shape the life experiences of disabled people. But that does not mean that the experiences of this group are reducible to these influences.
Life without a perceptual sense which most people view as elemental to everyday functioning is, for myself at least, both demanding and difficult, in practical as well as emotional terms. To say that is not to submit to ableist solipsistic ruminations of personal tragedy, but simply to state a fact which is basic to my daily existence. It also in no way interferes with my political bearings, or deters me from a career’s work devoted to unpacking the minutiae of how ableism in all of its forms continues to shape lives in devastating ways. The idea, based both in social model and social constructionist thinking, that I ought to collapse this reality into something more ideologically palatable to my political allies, or less threatening to a fretful community confronted with the frailties of the human body, feels both distorted and dehumanizing. Of course, the issue of how expressions of the lived quandaries of impairment risk re-igniting stereotypes of pathos and inadequacy is very real; I have previously dealt with this at length (Watermeyer and Swartz 2008; Watermeyer 2009a; Watermeyer 2013; Watermeyer 2014). As scholars and activists however, this should not justify the silencing of a swathe of what it means to live with disability. Ironically, to do so is not to resist ableist notions, but to collude with them, through reinforcing the all-too-familiar idea that this layer of experience represents shameful evidence of inferiority, or some intrinsic human brokenness. Constricting self-awareness of the personal and emotional weight of impairment experience, as ironically, can stunt self-insight more broadly, with disastrous consequences for the disability movement (Watermeyer 2017; Watermeyer and McKinney 2022). It is antithetical to the psychological integration which disabled people are particularly in need of as they face socially engendered traumas of many forms.
Living without vision requires engaging with the world, with its moment-by-moment challenges and opportunities, with much less to go on than that available to those with intact senses. While I fully embrace critiques of our occulocentric world, vision would not be so central a faculty in human functioning were it not so strikingly useful. People use vision to make dozens of decisions per minute on what they want to approach, explore, avoid, appreciate, enjoy or manipulate, all the while benefitting from passive, incidental learning. Knowing so much about the environment in the all-at-once modality which vision offers provides for a way of being with spontaneous shifts at its center, as choices are made about how to live most beneficially in each moment. None of this is to support the pernicious idea that life without vision cannot be full and fulfilling, not at all. Yet, the need to gather data more prosaically, in the longitudinal and cumulatory modality of audition, often imbues everyday life with a deliberate, even calculating quality. In my own personality this is typically offset with spontaneity of another kind, to do with my love of humor, irreverence and human relationship, but the principle remains.
Deteriorating vision has meant learning to live without things I love to experience, such as the faces of my children and my wife, the beauty of nature, the familiar smiles of dear friends, visual art of all sorts, and a myriad of other things from the aesthetic to the elemental to the mundane. As is the case with my son, I have a passion for sport of every kind, as both participant and spectator, which began as early as I can remember. Due to my disability, he and I have lived through the loss of never being able to share this with one another in play. My son’s lasting sadness about missing out on the shared joy of playing football or cricket with his father is, I feel certain, not satisfactorily understood as a social construction. Besides the immense impact of my middle-class white privilege, and my otherwise blessed and full life, the experiences I describe here are inextricably part of who I am.
What I am attempting to communicate here was captured well by a 42-year-old man living with quadriplegia, who participated in a research project I led some years ago (Watermeyer 2013). For him, the onset of paralysis from the shoulders down was, as is (we venture) always the case, a profoundly traumatic loss (see Watermeyer and McKinney 2022), with which he continues to grapple. In the statement below, he recognizes that this internal process for him is mediated by exclusion and aversion from society, but also alludes to how the disability community colludes with an imperative to silence the hardest parts of his everyday battle with the exhausting labors of quadriplegia. He told me the following:
what I think … is that if I was more accepted in society, that I wouldn’t be feeling the loss as much as I do … because … I would have a lot more support around me. As a community, that would be helping me get through this, but as it is it’s just like ‘this is your problem, now cope with it’. The best thing would be if I could just like say to some guy, ‘you know I really wish I could move today, it’s really crap that I can’t move at the moment’. And to turn to anybody and be able to say that. To say this is how I feel (research participant quoted in Watermeyer 2009b, 284).
The deeply held, emotive and continuous nature of the experience described here can, in my (our) view, not be knowable within the bounds of Thorneycroft’s (2024) designation of disability as an entirely discursive accomplishment. For this man, the basic experience, thereafter mediated as it is, is the reality of a body that cannot move; contrary to constructionist principles, this is a reality which does not share the illusory quality of all other discursive versions of his body. Those versions belong to everyone, including himself; this embodied version belongs only to him. To construe an experience as discursively produced, as per the position of Thorneycroft (2024) is to argue that changing discourse will fundamentally and globally change its nature, thereby perhaps solving its ill effects. Here, this is not the case. We are confronted with the awkward reality that much disability involves loss, of which some is amenable to social intervention, and some is intractable.
Clare
Taking up from where Brian left off, I am struck by the idea that much disability involves loss and that this is an experience I live with every day in my own reality of being disabled – the increasing loss of my bodily abilities. Of course, disability reminds us of our own human fallibility and vulnerability, something that many people – the nondisabled particularly – (can) largely ignore. However, having a disability, specifically Achondroplasia, a form of human dwarfism, brings with it many challenges both within the bodily realm and outside of the body. I am also female, white and middle-class – the irony of living diversity and disadvantage but also being privileged due to my race and class status is not lost on me. My experience of being disabled can very much be understood within a social model of disability lens where I feel disabled because of the built environment around me, which is structured for the non-disabled, average height person (Watermeyer 2023). As Barnes (2012) argued, people are constructed as disabled because they do not fit into the cultural and physical setting. Indeed, ‘bodies are exposed to the architectural performance of pathological orderings and norms’ (Schillmeier 2020, 13).
I also contend with stares, double looks and even mockery by those around me because I look so visibly, strikingly different. Certainly, ‘dwarfism is a dramatic, physically distinctive, and immediately identifiable condition’ (Ablon 1990, 880). I stand only 4 ft tall (120 cm) with a large head, short arms and legs, and have a dominant dwarfism gait. Arguably visible disabilities invite experiences of disablism. Psychologically speaking, disability can feel intolerable to think about and threatening to engage with for both disabled and able-bodied individuals, as Kristeva and Herman (2010) state:
The disabled person opens a narcissistic identity wound in the person who is not disabled; he [or she] inflicts a threat of physical or psychical death, fear of collapse, and, beyond that, the anxiety of seeing the very borders of the human species explode. And so, the disabled person is inevitably exposed to a discrimination that cannot be shared (Kristeva and Herman 2010, 251).
No matter how powerfully true this is, it does not confirm Thorneycroft’s (2024) belief that the corporeal realities of my life and body just described can be somehow subsumed by culture. My dwarfism and disability are situated and centralized within my body and can only be understood through an embodied perspective of disability – something that Thorneycroft’s (2024) paper is unable to grasp or account for. One of the features that comes with my form of dwarfism is back problems, and over the course of my adolescent and adult life I have had to contend with a great deal of back pain, slipped vertebrae discs, and pinched nerves. I have had three spinal surgeries, one in my neck and two in my lower back, one of which was a five level vertebrae fusion which has limited much of my movement and flexibility. I live with daily pain and decreased ability to do things due to my back pain which is a direct consequence of my disability. I can no longer partake in all the family activities I so enjoyed doing with my husband and children, one of which being a simple Sunday afternoon stroll with the dogs in the park. I am reminded that my disability sits within my body, and I am very much fallible. My embodiment needs to be accounted for by disability theorists.
Discussion
Prior to Tremain’s (2001) problematizing of the social model dichotomy’s reliance on the now unstable sex-gender binary, Williams (1999) offered what is, in our view, a telling contribution to the present discussion. Quoting Bhaskar (1989), Willliams (1999, 805–806) underscored the problem of the ‘epistemic fallacy’: which, as in our discussion above, refers to the conflation of the ontological with the epistemological in the understanding of embodiment. This is a situation in which the bodies of both disabled and nondisabled people are reduced (by social constructionists and social modelists alike), to what is known about them (Williams, 806). In other words, a viewpoint which claims that ‘statements about being can always be analysed in terms of statements about our knowledge (of being)’ (Bhaskar 1989, cited in Williams 1999, 806). No matter how we name it, Williams (1999, 806) goes on, the body remains a real entity, which has its own ‘mind-independent generative structures and causal mechanisms’. In short, it has an ontological depth which is irreducible in the face of epistemological claims. Although human characteristics can only be expressed within society, it does not by any means follow that they are entirely attributable to it. Instead, remarks Williams (1999) with keen insight, humans must hold certain characteristics in order to be shaped by social influence, such as in the capacity to learn language. Even in cases such as disability, where the biological is profoundly mediated in a host of respects, this does not mean that what is mediated is not biological, or that the physical world somehow becomes epiphenomenal (Archer 1995).
The life-worlds of disabled people can only be understood and hence responded to in our creation of an ever more caring society, if provision is made for the experience of body-minds that move, perceive, know, communicate or otherwise function in ways which present difficulties in living. Shakespeare (2006) is unequivocal in stating that ‘disabled people are disadvantaged by society and by their bodies’, going on to say that ‘it is inescapable that some forms of impairment are more limiting than others’ (Shakespeare 2006, 56). If the latter statement is true, and we believe that it is, then there will often be loss associated with the reality of varying limitations. As will be familiar to many readers, the question of loss and grief in disability is one freighted with controversy because of its association with pity-inducing stereotypes of tragedy, which can compound the pathologization and exclusion of disabled people. While this concern is very real, two issues must be held in mind. First, evidence suggests that loss and grief in the lives of disabled people, far from being limited to functional limitations of the body-mind, has a center of gravity based in socially engendered exclusion, leading to deprivation of resources, opportunities, relationships and other essential human needs (Watermeyer 2009a; Watermeyer 2014). In fact, loss to do with experiences of social oppression and the functioning of body-minds tends to be deeply interwoven and difficult to separate; yet this does not make the latter reducible to the former. Second, we contend that the prohibition of expressions of emotion (Ahmed 2010), and especially grief (Watermeyer 2017; Watermeyer and McKinney 2022) is a key mechanism which maintains the subordination of disabled people, as is also the case with other oppressed groups (Cheng 2000). Being required to deny grief, not only publicly but also to oneself, limits the possibility of growing both self-compassion and a politically useful, appropriately entitled rage at the reality of social injustice. For Frost and Hoggett (2008), loss is ‘constitutive of subaltern identities’ in the sense that traumas that are both social and embodied may remain not only untold, but in some sense unknowable – in the words of Judith Butler, the ‘loss of loss’ (Butler 2003). In the case of disability, this prohibition of grief is fundamentally entangled with the ableist drive for normalization (Davis 1997; Ravaud and Stiker 2001), which exists in an awkward yet unsurprising tension with imputations of tragedy and damage and has been colluded with by both social modelist and constructionist disability theory. For the present discussion, an important question is whether models of disability of one sort or another are able to make conceptual space for considering that part of disability-related loss which has a significant basis in functional limitation. The point is this: if loss is to be acknowledged, in the context of the layered and fluctuant nature of the self, it cannot be on the basis of a fabricated orthodoxy that some feelings are admissible, while others just adjacent are not. Human emotion is not ordered in some sort of rational, bounded system; to try to coerce such order is to oppress something quite basic about our shared way of being (Ahmed 2010). Thorneycroft’s (2024) suggestion that the concepts of impairment and disability be collapsed into one another, as we have already noted, further narrows the already cramped space available for contemplating the practical and emotional reality of differences in body-mind functioning and morphology. Beyond this, it also demands that emotional experiences associated with the interplay of impairment and oppression all be forcibly construed as of social origin, alienating from self those internal realities which simply do not fit there. The antidote for this impasse is a statement so simple as to be almost banal: suffering oppression is hard, but ill or malfunctioning body-minds are hard too. Support for this common-sense reality is, perhaps surprisingly, rather broad (Danermark and Gellerstedt 2004; Shakespeare 2006; Shakespeare 2014; Watson 2012).
Even as she argues that the social model is worthy of rehabilitation, Carol Thomas (1999) comments that ‘surely it is obvious that some restrictions of activity are caused by limited physical, sensory or intellectual functioning?’ (Thomas 1999, 38). In stronger terms, Vehmas and Makela (2009) express something near bewilderment at ‘mainstream’ disability studies’ unwillingness to recognize impairments as palpable ‘biological facts’ with inescapable, real-life consequences (Vehmas and Makela 2009, 45). Thorneycroft’s (2024) solution to the social model’s unsustainable impairment-disability binary is, in effect, to simply choose one – disability – and erase the other; this is no solution at all. Returning to Hughes and Paterson (2006), these writers agree that impairment and disability cannot be discrete but involve ‘a complex interpenetration of oppression and affliction’ (Hughes and Paterson 2006, 335). So, while any simplistic notion of a neatly pre-discursive body is rejected, the fact of ‘affliction’ remains; not all disabled people are ‘afflicted’, but, we would venture, many are. Here, the body is the very ‘stuff of human affliction and affectivity’, while being both the subject and object of oppression – an understanding which directs us toward the need for a phenomenological sociology of the body, which can make explicit space for the losses and quandaries of impairment (Hughes and Paterson 2006). Viewing the lived body-mind as continuous with selfhood dispenses with artificial categories of emotion, encouraging the authenticity and psychological integration which is at the heart of self-compassion. Enselfment is the living of a unitary phenomenology, embodying the mutually constitutive currents of cultural and somatic processes. The self, and hence the body-mind, are not possessed, but lived (Toombes 1994).
Critical Realism and Phenomenology
The position sketched above fits well with the critical realist orientation promoted by Williams (1999), and later by Shakespeare (2006; 2014). Expanding on Garland-Thomson’s (1997) innovations, Shakespeare (2014) distinguishes between what he terms reductionist and multifactorial accounts of disability, with both social model and purely social constructionist views in the former, impoverishing category. In his view, an ‘unashamedly eclectic and pragmatic: position is called for, which sheds narrow theoretical allegiances, along with their liability to determinism of either a biological, social or cultural nature (Shakespeare 2014, 72). In place of any exclusive orientation, Shakespeare (2014) models a freedom to draw on the best that materialist, constructionist, feminist, and biomedical approaches have to offer, viewing each as holding important pieces of the disability puzzle. From the outset, a critical realist perspective welcomes complexity, including the acceptance of an external reality without the need to resort to extreme relativism. What this means is that it ‘attends to the independent existence of bodies which sometimes hurt, regardless of what we may think or say about those bodies’ (Shakespeare 2014, 73). Critical realists draw a clear distinction between ontology, reflecting what exists, and epistemology, referring to our thoughts about what exists (ibid.) which, crucially for our purposes, allows for the body to have a nature independent of how we may pontificate on it. Boldly staking a claim for the legitimacy of body-mind experience, Shakespeare (2014) goes on to say that ‘while different cultures have different views or beliefs or attitudes to disability, impairment has always existed and has its own experiential reality’ (p. 73). Having thus established the body-mind as irreducible, the position of Shakespeare (2014) may then be animated by phenomenological work in the embodiment of disability (e.g. Garland-Thomson 1997; Michalko 2002; Wendell 1996), in the spirit of being ‘unashamedly eclectic and pragmatic’. While hermeneutic or interpretive methods in phenomenological research lean into a post-modern position, at its core phenomenology examines experience on the basis of ontology rather than social construction, defending a ‘real world’ space for embodied experiences such as those we describe above. In this sense, a critical realist position allows the lived body to exist, while phenomenological methods offer the means to describe experiences which are embodied, psychosocial, relational and cultural.
As alluded to earlier, the combining of approaches which attend to both the constructed and embodied nature of disability has implications for how intersectional analyses of disadvantage may, notwithstanding their fundamental importance, at times handle disability as simply ‘another’ discursively produced identity, belying how diverse and often adverse experiences of embodiment set it apart from race, gender, sexuality, and ethnicity. While the experience of disability is, of course, profoundly culturally mediated (such as through discourses of race and gender, and material realities such as socio-economic status), discursive essentialism can literally mediate the body-mind out of existence. For a spirited exchange in the pages of a prominent disability studies journal regarding this issue, see Watermeyer and Swartz (2023; 2024) and Ned et al. (2024). Along similar lines, Danermark and Gellerstedt (2004, 350) advise that we take a variety of ‘levels, mechanisms and contexts’ into account in our analysis of disability, affirming that injustice surrounding disability can only be addressed through combined recognition of the roles of cultural, social, economic, and biological factors. For the purposes of this paper, this position affirms the lived reality of diverse embodiment described by disabled people, including ourselves, underscoring Archer’s (1995, 285) clarion statement that ‘humanity is never a gift from society’.
An important aspect of the critical realist position – that part which lends its ‘critical’ nature – is the reality that layers of our experience of embodiment, and hence self, lie beyond the reaches of consciousness (Williams 1999). This brings emancipatory potential, through the possible uncovering of hidden, oppressive layers of embodiment – a liberation ‘far more concrete and tangible than the shift to alternative discursive registers’ (Willliams, 1999, 810). What Williams (1999) is referring to here is that place of hidden, complex loss described earlier, where functional limitation, morphology, pain, and fatigue interweave with imputed and hateful culturally condensed meanings and judgments to do with normalcy, damage, and abjection. This is a world of experience banished to the unconscious not only by cultural mores, but also by the constrictive dictates of both materialist and constructionist disability theory (Watermeyer 2014). What ‘emancipation’ calls for here is a compassionate but critical interrogation of self, gesturing toward the usefulness of critical psychoanalysis in disability liberation (Marks 1999; Watermeyer 2006; Watermeyer 2013, Watermeyer 2017). And if embodiment and enselfment are the same project (Turner 2001), it is not only unrealistic, but self-defeating, to attempt to investigate one but not the other.
Conclusion
Williams (1999) summarizes his position as follows:
Disability … is an emergent property, located, temporally speaking, in terms of the interplay between the biological reality of physiological impairment, structural conditioning (i.e. enablements/constraints) and socio-cultural interaction/elaboration’ (Williams 1999, 810).
In our view, it is not only possible, but imperative, to provide a home for experiential accounts of the body-mind, without sliding into biologism. Foregrounding a phenomenological approach to embodiment offers an accepting space for describing, to ourselves as well as one another, the immediate and continuous proprioceptive, cognitive, and affective living of the body-mind, deepening self-understanding as well as the possibility of a more attuned and compassionate social world. Theoretical and ideological ideas which erase the body-mind do not only hide our experience as disabled people from the world, but also from ourselves. As the global population continues to age, and with human frailty and mortality being what it is, there is much to gain for everyone from broadening a candid, humane, and inclusive conversation about what it is like to live varying forms of embodiment, with their attendant joys and struggles. In our own lives, our forms of disabled embodiment are ways of being which do not intrude upon our life-worlds, but constitute them, in ways which vary widely at several experiential levels, notably the emotional. To not know these things about us is not to know us. As we are all aware, the history of disability is a story of the silencing of experiences of oppression (Swartz et al. 2018); silencing of the body-mind is every bit as pernicious.
Competing Interests
The authors have no competing interests to declare.