The Wheelchair and the Whale: final eschatology and the absence-yet-presence of disabled people from the ideal society

This is the full text of a paper for the Conference “Worlds Ending — Ending Worlds” at the University of Heidelberg’s Centre for Apocalypse and Post Apocalypse Studies.

I’m based in the Humanities Division at Oxford University. This means that in 2025 I, like thousands of my colleagues, will move into the inevitably beautiful and imposing Stephen A Schwarzman Centre for the Humanities. Like so many modern flagship buildings, the new centre will be a model of best practice in sustainability. And like the other buildings on the site of the old hospital it will occupy, part of that best practice will be the elimination of single use plastics from all catering outlets.

This is the point at which sustainability and accessibility collide. This collision is about what public space is, what it means, and how we use it. And by public space I mean so much more than airy atriums and concert halls. I mean those idealised and imagined multidimensional spaces in which communities, comprising every intersubjective relationship, play themselves out in pursuit of meaning and purpose. To put it in terms of the theological skeleton that underpins what is happening, this is the collision of fundamentally incompatible visions of the City of God.

As with any idealistic vision, we need to ask two questions. Who is missing? Why are they missing? In the original architects’ drawings for the Schwarzman Centre, disabled people were literally missing. That, fortunately, is no longer the case. But while those drawings now show wheelchair users enjoying their beautiful surroundings and cane users moving with ease through the apparently accessible waymarking, the relaxed and inspiring cafe culture scenes where the academy and public spaces blur to the benefit of both still contain an absence if you scrutinise them enough.

And this public space is representative of public space as a whole because we are missing everywhere. And it is a very particular kind of “missing.” We are both utterly absent as subjects yet ever on the horizon, haunting the subjectivity of others as boundaries and warnings.

And the conceptual framework that makes sense of this simultaneous omni-presence and omni-absence is eschatology, because eschatology’s central concern is, in essence, what is present and what is absent in an ideal communal space or time. It is the vision of heaven. But it is also, and in equal clarity, the vision of hell. It is the sheep and it is also the goats. And the stories we tell about our ideal societies. The damned are, of course, absent from visions of heaven. But no vision of heaven can exist without their constant presence in the form of prohibition and warning and whisper.

Eschatology is, literally, the study of the end time. But eschatological thinking in the Judaeo-Christian tradition is not necessarily focused on the “end of the world” in the sense of a future event. The “end time” in the sense in which it matters for eschatology is an event in salvation history. It is “the point at which the qualitative change takes place between life as it is in a broken world and life as it is in a healed world. It is often the case that this involves some kind of physical end point or break in history. This is what is often called “final eschatology.” On the other hand it is sometimes the case that this rupture is seen as something that has, in some significant way, already taken place. That healing, or at least the path to healing, has been made possible in a radical way as the result of a particular event, in the Christian tradition most commonly the gift to believers of the Holy Spirit. In these scenarios eschatology is often referred to as “realised.”

The presence-and-absence of disabled people; our use as horror-and-hope, as demonstrable warning fits firmly within the category of final eschatology. It is the connection between final eschatology and the erasure of disabled people (both by their literal absence and by their omnipresence in ghostly or monstrous form in other people’s subjectivity) that I want to explore

I suggest that in large part this final eschatological framework into which disabled people have been slotted is born of, but also designed to arouse, horror; to create distance; and that both of these are driven by disgust at disabled people’s existence, both unconscious, because we represent brokenness, and conscious, because we represent what people could become.

I argue that we ARE inextricably connected with the end of the world, but in the sense of a realised eschatology. Not as a warning or something to be, ultimately, removed or restored. Rather we represent the presence of the end of the world in contemporary society in the sense that we are essential to society’s healing. It is the removal of the barriers that disable that marks the healing of society. To heal a broken society you need not to create a society from which we are cast out but to break open society and transform it so that it fully includes us. Our bodies and minds are neither broken nor healed. They are simply here. It is society that is broken or healed as it relates to those bodies and minds.

I want to examine two examples of popular narrative imagination, exploring how they adopt final eschatological frames for disabled people in different ways, connecting disabled people with frightening outcomes at the end of the world. You could call it a tale of two scientists.

Stephen Hawking died on 14 March 2018. One aspect of the popular response was inevitable, And sure enough the memes appeared straightaway. There was the dead and risen Hawking, looking towards the afterlife and standing to move forward into it, leaving his wheelchair behind, “free at last.” Hawking’s obituary in the LA Times described him as a “British physicist whose body was chained to a wheelchair”.

The online disabled community quickly responded. Indeed one key lesson from the representation of disability in the public space is that you won’t win a meme war with us. Marnanel Thurman’s “Nyan Hawking” animation, based on the original evergreen nyan cat video, showing a joyful Hawking in his chair riding across space to the Nya Nya backing track while shooting rainbows from his chair is a glorious riposte.

So what is the problem with the “empty chair” (itself a notable use of the Christian empty tomb typology) portrayal of the risen Hawking? Consider the mechanics of this representation.

The same mechanics were at play in Lego’s misplaced attempt to support 2022’s Autism Awareness Month, which featured a mini figure in a spacesuit and the caption “I am” with the word “autistic” crossed out and replaced by the word “astronaut.”

The mechanics work like this. To be disabled is to be broken. Humans are, in their ideal form, not broken. Disability is, therefore, both not a part of one’s true essence and something which ultimately we succeed when we escape, when we are finally healed. It is the model of a tripartite salvation history of lost paradise, a fallen existence on earth, and an ultimate restoration to original perfection in heaven.

Disability is fundamentally positioned in relation to a final eschatology. And that relation is one of “hope” and “horror.” Hope because the end of the world offers those of us who are disabled freedom from our disability. And horror because we are a warning. As living representations of lives separated from God at the most basic level, we are a warning of the worst that could happen, a symbol of danger.”

We are the monsters carved outside church walls, the dragons in the deep beyond the edge of the map, the witches outside the town walls. It is the role of those “inside” to keep us out. Our bodies and minds seem so distorted and distressed that we can only be absent from scenes in which the abled picture themselves as relaxed and happy; they are unable to imagine any kind of community with us, or indeed any peace for us, unless we have been transformed.

But it is also essential that they keep us “inside” as warnings in their stories, as symbols, as illustrations. It is this need — of abled society to keep us present but only as symbols; and of disabled people to manifest ourselves as subjects within society — which gives the debates over language their keenness. “Do not call yourself disabled” a father begged me after I gave a lecture on disability. The comment was the manifestation of an existential struggle — this was a man who genuinely sensed that in some way his child must be stripped of that label because it was an actual barrier preventing them from ever being truly together “on the inside.”

Tail fin of a whale as it dives
Photo by Nayeli Dalton on Unsplash

David Attenborough’s Blue Planet 2 took up a remarkable place in the imagination of the British public. While the damage done , in particular to marine life, by single use plastics had already started to lead to attitudinal and legislative changes, it was the film of a mother pilot whale grieving for her dead calf, killed by ingesting plastics, that turned using plastic straws into a socially unacceptable act overnight, similar to drink driving and smoking around children.

Anyone who claimed to need a single use plastic straw was vilified on social media by armchair experts who explained that alternatives were available. And as with Stephen Hawking the disabled community leapt into action online. Jessica Kellgren-Fozard produced a superb pair of YouTube explainers titled “Why Banning Straws Hurts People” and “What’s Wrong With Reusable Straws.” And infographics proliferated listing the functions of single use plastic straws that could not be replicated by the alternatives.

infographic showing why single use plastic straws don’t meet disabled people’s needs. Created by Hell on Wheels — link to full image description by clicking the link in the caption.
For full alt text visit the Rambling Justice post where the infographic was created

But bans, both legal and voluntary, remain in place. The inadequacy of exemption clauses would be enough for another whole book let alone a paper.

The mechanics here are slightly different It is not that disability is something “to be kept out.” Rather it is something which simply can’t be imagined in an ideal society. The needs of disabled people do not need balancing with other needs in a green utopia, because it cannot be imagined that paradise could involve such nuance.

The plastic straw debate demonstrates that the perception of disabled people’s needs stops at the point where those needs appear to conflict with environmental considerations. People who need single use plastic straws are offered metal, paper, silicone, or bamboo as alternatives because a need beyond that of “moving liquid from a container to a human” cannot be imagined. And this is where the underlying ontology of disability is the same in each of the two scenarios.

Because imagining the lives of the disabled, as experienced by disabled people, would be, as with Hawking’s wheelchair, to invite the witch back within the city walls. And because the act of imagining itself would be an act of empathy or solidarity with the monstrous that cannot be permitted within the saintly mind.

But what factors within abled society have led to the continued presence of such an eschatological framework in the midst of a largely secular society? There is of course an obvious driver, and that is the obviously apocalyptic elements to the discourse not only around climate but so many other features of life. The language of cataclysm, armageddon, and paradise prime the mind for eschatological thinking.

But it is much more deep-rooted than that.

I suggest that retaining this positioning of disability, despite the apparently progressive narrative often presented, meets a far deeper need within society. That the primal feeling of disgust that led to the dual positioning of horror and hope within religious discourse in the first place survives the apparent decline of that religious framework. And that the structures this feeling creates — of a society within a society that functions as a beacon or a model of the possibility of something better — also serve an existential purpose at times like this because they offer a reason to persist.

Martha Nussbaum argues that disgust is people’s natural response to their animality, which they associate with weakness, fragility, inevitable decay.

This disgust at their own weakness is then projected outwards onto others who remind them of their weakness and fragility. This happens most readily with the elderly and the disabled. Feelings of disgust towards these groups provides people, Nussbaum argues, with a psychological buffer that protects them from contemplating their own animal nature.

I suggest final eschatology, either in the Neoplatonist sense of spirit purged of body or the Judaeo-Christian belief in a perfected body that has been transformed or restored enables a perpetual prevarication in relation to that animal nature.

A millennium and a half ago St Augustine distinguished between the earthly city and the city of God. The city of God was the term he used to distinguish those people here on earth who would ultimately find themselves in heaven. The idea, which in itself drew on the more ancient notion of “holiness”, has persisted.

It exists in the belief that it is possible to distinguish the “chosen ones” by their behaviour, their character, markers that set them apart as special. It is an idea that has filtered through to activism. From a vegan diet to shunning single use plastic, behaviours that benefit the planet demonstrate that you are “at home in the city of God.”

Holiness, behaving now as you will behave in the ideal future world, means, if I am right, to behave in such a way that this very particular fragility, the one associated with distortion and decay, is permanently prevaricated. The disabled cannot be part of the city of God , in this account, unless they transcend or are healed of their disabled status. And holiness cannot accommodate or adapt the city of God to such broken bodies and minds because to do so would collapse that prevarication. A holy community that is truly accessible would no longer be holy.

It matters that we understand this background to disability’s persistent presence and absence in popular discourses because it helps us to put up some waymarkers that allow us to reimagine those discourses in such a way that disabled people are present as subjects.

Those waymarkers are

1. That all such positioning is tactical, and born out of a desire to remove disabled people. This may or may not be deliberate but it is always present, and structurally always driven by othering (“we are disgusted by you — keep out!” or “society should find disabled people disgusting — and make itself as unlike them as possible”).

2. That it is not petty but necessary to reject many seeming imperatives on this basis. At the simplest level, structures that other us can have no place in any future that includes us.

3. Realising why so much rhetoric fails to engage disabled people who should be its natural allies, not just because it seeks our erasure but because it fails to make a positive case as to what difference it will make to disabled people now or in the future. We are often expected to be absent from the public sphere “for the sake of staving off catastrophe.” But if that is the case, then for us catastrophe has already occurred. So whose future are we preserving? Not that of future disabled people, because if our removal is part of the origin myth of what comes next then they will also be systematically excluded.

4. That relating disability to the future is essential for erasing us. It allows society to say “look what might happen” in a way that provokes horror — at the idea that if we are not removed from the future there may be more of us and more people might become like us. And it allows society to say “look what might happen” in hope as they look around and see that we are still here — in promise that one day, if they do things right, we will no longer be.

From these we see how we might do better — by removing the future element, making eschatology no longer final, so that our presence is accepted as a given and a society built around it and in relationship with that acceptance — that we are integral to society.

These markers allow us to reimagine disability’s place within discourse based on an eschatological template by replacing the current final eschatology with a realised one. In realised eschatology, the change is already here. This is a way of subverting the attempt to distance us by collapsing that distance. It is an attempt to centre US as the first fruits of the healed brokenness. Because a truly beneficial ”end times” must embrace those who need inclusion, it is our presence and not that of the abled that is essential, the sine qua non of the end times.

But disabled people are not recipients of action only. We do not just exist as catalysts to enable the rest of society to do better.

We are only objects of sufficient support from society to enable us to become fully participatory subjects in that society. This is the same sense in which the poor are the first fruits of salvation within liberation theology, not because there is a moral quality to poverty, just as there is not a moral quality to our bodies and minds, but because our presence is necessary for a society to know whether or not it is good, because our voices, in whatever form or medium we use them, drive transformational change through our agency within society; because our presence necessitates transformational change to give us back the agency a broken society has stolen from us; and because our fully empowered autonomy is the pen that draws the map, the tool that builds the road, and the vehicle that drives a broken society to healing.

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