Accepting Social Brokenness: Notes on Being Disabled

How do you feel? As everyone knows, this deceptively simple question is hard to answer, not least because what we feel, or think we feel, is overlaid with social discourse telling us how to feel. Social discourse informs us about what feelings are appropriate in given situations, and what feelings are bad - psychically or socially unhelpful. Recently, bad feelings (the ones we are not supposed to have, including those we are told we need to get over) have attracted critical attention. Eve Kosofsky Sedgwick (2003), Heather Love (2009) and Sara Ahmed (2013) are a few academic thinkers who have written about emotion as a social phenomenon and its structuring power.  Collectively, this interest in the social life of emotion is part of a larger “affective turn” in the humanities and social sciences.  This critical interest in affect has the potential to assist thinking about physical disability as a personal experience, as well as a social and cultural construction.

In this essay I explore explicit and implicit ideas around human inability, and try piece together a way to talk about the psychic affects of disabled embodiment. It is one thing to know and analyse disability as a social concept – an observable thing from the outside – but if we dare to turn it inside-out and look for the affective patterns that society has impressed on disabled individuals, we can begin to understand human ability more thoroughly.

In her auto-theoretical memoir, The Argonauts, Maggie Nelson thinks through the trauma that embodiment often involves. She writes about her own pregnancy and the changes in her own embodiment, while also following her partner Harry’s hormonal transition to a more masculine body. The account of these physical transformations provides me with a preliminary focus for observing our ingrained discourse and sentimental attachment to normative embodiments (male/female, strong, contained, independent, active, capable, uninhibited...). And then, for noticing how these ideas shape our conception of self and other, and affect our psychic relationship to our bodies.  Since what we feel and how those emotions are embodied are, although often not overtly discussed, fundamental to our individual power, understanding of the world and our place in it. Still, the psychic affects of human vulnerability, social invisibility and shame that inhabiting a non-normative body entails, are rarely examined. 

The social discourse and polarising attitudes around problematic embodiments, particularly physical impairments, continue to inhibit and prevent this kind of self-reflection. The emphasis on garnering power and pride from disabled embodiment negates something vital, namely our feelings of brokenness and the ways they influence our very being. Also negated are the social power and insight that these affects might afford us. In her deliberation on the negating effects of identity pride and queer affect, Heather Love (2009) asserts that we need to examine exactly what we feel, and what social powers and particular discourses are operating, in order to thoroughly understand society and social marginality (p. 1). Since Eve Kosofsky Sedgwick (2003, pp. 13-14) determined that by noticing the psychic inner patterns in ourselves, we can develop a more accurate understanding of external society. However, in attempting to avoid the medical model and its capacity to dehumanise our bodies, we have arrived at a place where we enact another level of emotional denial or dehumanisation, to fervently redefine ourselves as social objects, rather than medical ones.

Appropriately, the scholarly field of Disability Studies is necessarily orientated towards forward thinking and social action.  Thus it has strategically concentrated on social forms of embodiment rather than psychic ones in order to get away from the medicalisation of our bodies and advocate for social reforms. It therefore defines disability as the interaction of society with atypical bodies, rather than a quality associated with medicalised “impairments” in and of themselves. This shift in approach has put the liability back on society to accommodate our basic needs.  However, a side effect of this revolutionising shift is that it disallows discussion of certain negative emotions that lay hold to the experience of disability and cannot be socialised, if I might put it that way. And as Nelson (2016) reminds us, “…when something needs to be wilfully erased in order to get somewhere, there is usually a problem” (p. 73). The problem that this emotional erasure alerts us to is social and political, rather than a personal one, when we consider, like Sara Ahmed (2013) does, that  emotions can be viewed as“ not psychological states, but as social and cultural practices” (p. 9).

Across the last decade, Disability Studies has kindled a more inclusive field of inquiry. Crip Studies integrates various identity politics and marginalised embodiments (McRuer, 2006, p. 149). As productive as this intersectional analysis has been, I maintain that disability has been curated as a social sign of “brokenness” in a way that other embodiments, such as racial or queer identities, are not, purely because it profoundly alters and reframes physical functionality. It therefore affects the psyche and one’s sense of self in unique and painful ways.

Love (2009) argues there is value in discussing these painful“politically ambiguous” feelings and affect, because they candidly reveal “…the contours of the contemporary political situation” (p. 13). Yet to support the social model of disability, the negative affective states associated with disability have been turned outward and positioned within society. So however politically successful this rather mandatory critical stance is, it has inadvertently led to a double bind in which we have to discredit ownership of the frustration, grief and anger that often accompanies our own physicalities.

In some ways, this is why words are not good enough: They leave little room for the necessary ambiguity of authenticity, and often bring their own judgements.  Words are “…corrosive to all that is good, all that is real, all that is flow.”  In the first few pages of The Argonauts, Maggie Nelson (2016) recalls Harry saying that this is why words are the basis of “the cookie-cutter function of our minds” (p. 4).  And yet in some way words are all that we have.  Since the “real” and the “flow” can only be felt through our bodies, but like our bodies, they cannot be described through any medium other than words. Still, I’m troubled by the rhetorical question: “How can words not be good enough?” (p. 8). In response, I ask myself, “How can words ever be good enough?”  This simple inversion of meaning and shifting of the narration parameter is what perhaps Heather Love (2009) is advocating – to start with common identity accounts and trace them back to their historical origins, the social structures that created them. This might be what Nelson (2016, p. 4)  refers to as “kaleidoscopic shifting”. For example, the medical diagnoses of “right-sided hemiplegia” and “oral dyspraxia” do not sufficiently describe who I am or what living in my body feels like. If they were not emotionally understood as a defect or problem, these words are a good, or as good as any, starting point. 

When we use words to describe these affects on our selves or our bodies (or anything really), they are unavoidably limiting.  The language never entirely conveys what it is intended, especially when discussing emotive subjects or affect.  This is because words are an inherent part of social interaction, and our affective states are a part of psychic life, so this naturally creates a tension. Things can be psychically felt to be heavier or lighter than what they objectively are. Here is a problem of context and scale (Love, 2009, p. 11). It is intrinsically problematic for establishing a way to talk about negative affects without being drawn inward and letting it be consuming. Yet, the seeming “social injury” of disability is already impressed on the psyche, and perhaps by allowing it to be discussed, it could minimise the residual effects.

“Sometimes one has to know something many times over. Sometimes one forgets, and then remembers. And then forgets, and then remembers. And then forgets again.

As with knowledge, so too with presence.” (Nelson, 2016, p. 27)

Like countless other experiences that exist on the margins of the post-enlightenment grand narrative of improvement, disability as a social object has been written into one of two master plots:  tragedy or triumph.  Eve Kosofsky Sedgwick (2003) insists that some social objects take on a “glossy if not positively tacky” texture that hides the gritty social, cultural and historical origins of things (p. 14). Far from being social abstractions, the affective texture of social objects mediates relations of “agency and passivity” in its vicinity. We could say that the two established approaches to talking about disability (the affective texture of tragedy or triumph that clings to it) means we are either seen as actively overcoming, or passively succumbing, to our embodiment, never just living it.

Therefore, actually living a disabled embodiment is exhausting (in many ways), because it is inherently an act of resilience and social resistance at a very physical level, and it is materially forced to resist against and adapt to preconceived notions of humanity, of functional and active human bodies. It also forces people to confront the inherent fragility of human embodiment. Nelson writes of this contradiction:

“Is there something inherently queer about pregnancy [or we could substitute “disability” here] itself, insofar as it profoundly alters one’s ‘normal’ state, and occasions a radical intimacy with—and radical alienation from—one’s body? How can an experience so profoundly strange and wild and transformative also symbolize or enact the ultimate conformity?” (p. 25)

In this way, disability represents both a malfunction, and a constitutional tenuousness, of human ability. So unlike other identities, impaired bodies have the capacity to highlight and agitate arbitrary ideas of human existence and ability, and of self and other.  Crip Studies has implemented this broader social use of disability; it has prompted more of a self-reflexive approach to the analysis of disabled bodies and the social dynamics they expose.

Obviously this is not unique, all embodiments, and therefore social settings are mediated by our affective circumstances. In turn, this forces us to delineate the boundaries between internal and external, self and other (Ahmed, 2013, p. 24) . Circulated notions of human existence attract and attach particular feelings to embodied exterior surfaces, which demarcates their interior.  Maggie Nelson (2016) writes of the not-quite-accurate assumption of normality thatthe coupling of her and Harry’s bodies elicit:

“You pass as a guy; I, as pregnant. Our waiter cheerfully tells us about his family, expresses delight in ours. On the surface, it may have seemed as though your body was becoming more and more “male,” mine, more and more “female.” But that’s not how it felt on the inside. On the inside, we were two human animals undergoing transformations beside each other, bearing each other loose witness. In other words, we were aging.” (p. 85)

The two master plots of disability, positive or negative, celebratory or pitying, are never orientated toward normality or neutrality, never offering a way to pass as “ordinary”. Additionally, the  “... surfacing of bodies involves the over-determination of sense perception, emotion and judgement,”(Ahmed, 2013, p. 25).  In this way, the two plots “bind” highly emotive social judgments onto human inability or vulnerability, and “block” alternative meanings from forming (Ahmed, 2013, p. 91). Consequently, these socially ubiquitous narratives of disability makes moving through social spaces challenging, as our bodies become encumbered with weighty notions of pity and loss, or astonishment and achievement.

“Stuck” with these affective associations that originate in the social fabric, disability is far from being a stable object that a single corporeal body possesses, or even merely a part of the self and its identity (as ardent disability activists claim). More insidious still, is the way that these entrenched feelings and social judgments cannot be detached from the embodied experience of disability. Hence living with, and accepting that your body could be classified as “broken”, or “deformed” (as a doctor accidentally described my palsied limbs within earshot), forms a readable pattern on the psyche.

Like embodying any other tricky identity marker, the negative judgements destabilise one’s distinct sense of being, and in order to find cohesion again, “it doubles its presence” in the form of social paranoia (Kosofsky Sedgwick, 2003, p. 126). But that paranoia, too, imprints its mark. For to be hyper-cognisant of what others are thinking and still maintain self-awareness gives way to an awkward but profound type of social understanding. One, where, as Maggie Nelson writes, again of being pregnant in public, “ ….an intimate relation is going on – one that is visible to others, but that decisively excludes them” (Nelson, 2016, p. 108).

As opposed to being pregnant, living disability is not a temporary shift in social sensitivity; it is a permanent foundational state.   Living with these internalised notions of self and otherness, where the “other” is self, forms a vigilant embodiment that is constantly looking out for a deeper, or perhaps harsher, social knowledge (Kosofsky Sedgwick, 2003, p. 130).  “How we feel about others is what aligns us with a collective, which paradoxically 'takes shape' only as an effect of such alignments…”(Ahmed, 2013, p. 54).  In many ways, we are constantly told to minimise our othering-disabled traits and align ourselves with the “mainstream”, in order to enact the overcoming of our “defective” embodiment.  The trauma therefore is not perceived as being collective, it is felt as individual, and thus it is further isolating. In this sense, social discourses about disability have robbed us of being able to recognise the authentic daily battles with our physicalities (as well as the ones with society), and not be seen as somehow “tragic” or “self-pitying”.

Usually the personal difficulty that comes with any disability, and living in an inaccessible society is used as an emotive way of totalising and simplifying the lived experience.  Otherwise, it is minimised to such an extent that it seems to have no affective influence. In this way, the damaging effects of living non-normatively has been “glossed” over, and therefore they become psychologically misplaced and can be siphoned into forming identity pride. This often seems to be the less destructive outlet for frustration and the most productive way to regain power and reclaim embodiments from detrimental histories.

While being a valid and useful tool, without acknowledging or articulating bad feelings, we run the risk of reinforcing the unjust societal structures. For without analysis of its origins, “…pride is a reverse or mirror image of gay [or disability] shame, produced precisely against the realities it means to remedy” (Love, 2009, p. 15). Pride about disability, while being necessary to cultivate social resilience and a sense of community, does not guard against the social marginalisation and isolation, or even reduce the emotional impact of these things. Any socially dictated emotional responses to disability actually alienate us from our bodies and our own inner psychic states. In order to imitate responses, we repress and convince ourselves that we are not affected.

We cannot be present with our emotionality, or at least not in a way that accepts the societal origins of our affective patterns. For it seems in order to gain value, the histories and the suffering of social objects need to be eliminated.  So while the “glossy” emotional arcs of tragedy or triumph seem to speak to our humanity and resilience, these “…'feelings' become 'fetishes', qualities that seem to reside in objects, only through an erasure of the history of their production and circulation…” (Ahmed, 2013, p. 11). The underlying belief disability discourses carry (but try to erase) is that being disabled, or even inhabiting a non-normative body, is still a personal inadequacy and remains a source of a social discomfort.  

Surfaces of problematic social occurrences, like disability, are glossed and “…their outlines are blurred in a characteristic way” (Kosofsky Sedgwick, 2003, p. 14) to comfort society, and keep disabled bodies “as other” and highlightsocial norms (Ahmed, 2013, p. 54). As such, these ubiquitous pitying attitudes make up the accepted social discourse of disability, which we need to reject to live. In order to emotionally compensate for this social shame, society tends to routinely reverse it and transform it into triumph. Kosofsky Sedgwick (2003), referencing Walter Benjamin, notices this process whereby the agitating texture of social resistance often gets smoothed over, so it can be disseminated into mainstream dialogue “…resistance to controls, something that becomes second nature to asocial persons, returns in the propertied bourgeoisie…”  (p. 14). We can see this when we look at any disability story of achievement; there is always an element of social injury and practical struggle within mainstream society.

Heather Love (2009) aptlyreminds us, “the trace of those forgotten is visible” even in those narratives of overcoming and of identity pride, “a ghostly sign of the reversibility of reverse discourse” (p. 21).  Those forgotten, those who are never included in the usual discussion about social inclusion, are people who are not able to perform or enact the “overcoming” of disability, and are often mistreated and institutionalised. They represent the societal prejudice and the social inaccessibility as being the conditions that gave rise to the reverse discourse initially.

This is the painful grittiness that has been hidden in order to make disabled embodiment more palatable and consumable. Notably, it is the case, even though inaccessible buildings and discriminatory attitudes are everywhere; we are not afforded the same educational, employment or even social or cultural opportunities. These tangible societal, social and physical evidence of the “sticky” negative conceptions of disability all affect and impress on our social identities, not to mention, our psyches. Superseding these blatant social discriminations is what has been given social currency, rather than realising universal accessibility and opportunity. This is maybe why the social requirement to represent triumph over the “tragedy” gets internalised, because “There is nothing you can throw at me that I cannot metabolize, no thing impervious to my alchemy…” (Nelson, 2016, p. 78). We live with, and are defined by, these skewed societal views and feel the need to move past, or at least supress, the negative impacts of disability to proudly prove our humanity, social presence and capability.

Subsequently, those of us who live with disability know, not only what it is like to wade through the social stickiness, but to also have our bad feelings placated in the process. We are denied an emotionality that comes with implicit marginalisation and isolation for the ease of societal comprehension.  So the texture of“disability” is destructive to forming a vocabulary for the feelings of inherent fragility– or our feelings of brokenness – because it is difficult to know where the problem of disability begins and ends.  There is a social failure to see disability, except in those narratives of overcoming, or in the psychic associations through which disability accumulates and maintains its affective and damaging social force.

In my conception of an ideal society, like Maggie Nelson (2016) theorises, “…the antidote to shame is not honor, but honesty,” (p. 39). I have offered the vocabulary of “sticky” and “glossy” as a way to observe the function of disability discourses as they shape our social environments and then psyches. However throughout this essay, I have attempted to go beyond this social surface to the embodied subject itself and the affective power that disabled embodiment has. As Love suggests, we need to recalibrate our contemporary perspectives and then work backwards to uncover other equally authentic viewpoints.

Finally, even though the social model provides a useful way to separate the difficulties of disability from the impaired embodiment, we cannot separate our self-perception and affective embodiment from the culture we have been socialised in. So as long as we still live in a society that preferences full human ability, disability will attract negative emotions and therefore exemplify a problematic embodiment, and it will create negative tension between body and self, irrespective of our current social environment.

Works Cited

Ahmed, S. (2013). The cultural politics of emotion: Routledge.

Kosofsky Sedgwick, E. (2003). Touching feeling: Affect, pedagogy, performativity: Duke University Press.

Love, H. (2009). Feeling backward: Harvard University Press.

McRuer, R. (2006). Crip Theory : Cultural Signs of Queerness and Disability. New York: NYU Press.

Nelson, M. (2016). The Argonauts: Text Publishing.