Holiness. Utopia. Disgust. imagination, disability, and the mechanisms of erasure

Full text of the talk I gave for the panel: “A Future Worth Fighting For: technology, disability, and ways of being” at the Futures Thinking Conference 

We are increasingly reimagining what it means to be-in-the-world. Particularly, we are accepting that we cannot live in the future as we live in the present. Indeed, if we want to have a future at all our behaviours must adapt until they reach an equilibrium point, which we tend to refer to in terms of sustainability.

Let’s start with the remarkable response to David Attenborough’s Blue Planet 2 in relation to the plastic that is choking the oceans and their ecosystems. Campaigns against single use plastic straws have not only proliferated, but been successful in seeing bans across both regions and companies.

We also realise that the same traits of modern life that lead to the overproduction of harmful materials and the overconsumption of essential resources have led us to a way of life that is unsustainable because it increases our anxieties, alienates us from each other and the world around us – in essence makes humanity itself an overconsumed resource. And so we are being encouraged increasingly to scale back, to undergo digital detox. This illustrates an initiative from the Rusty Bicycle, a pub here in North Oxford, which offered customers a reduced bill if they sealed away their phones so they could re-engage in a truly human way with their companions.

And of course, we realise our cities and our buildings, and the way we use and occupy them, must adapt to become less carbon dependent, less alienating. This beautiful car-free leafy scene is from Oxford’s strategic transport plan.

Of course, this is the embarrassing moment I have forgotten to read out my opening paragraph.

The environmental crisis has heightened an erasure of disabled people that represents a failure of the imagination. That is to say, the future is one in which we are not imagined by others; and one in which we cannot imagine ourselves.

These slides all represent futures in which the disabled have not been imagined and cannot imagine ourselves. Take a look at the “filler” figures in this beautiful building, this regreened street. Did you notice at once how many wheelchair users are there? How many canes? How many frames? How many assistance animals? The architects and planners clearly didn’t.

And of course a world that rewards tech free living is a world that charges a premium for those for whom technology is not a barrier to communication but an essential means of communication. And a world in which public drinking spaces do not have single use plastic straws is a world which tells many disabled folk the right to a basic standard of living is something to which they have no right.

In short, the measures being advanced as essential for “our survival” exclude many disabled people from the “we” whose survival is sought.

The fact this exclusion is unconscious reveals something worrying about society’s attitude towards disabled people (and, of course, other groups) – that we disgust them – and raises the question whether the same space, our planet, can ever be home to all of us.

So how does this erasure come to be?

Well, the first answer is in that tricky little word – sustainability. As a theologian this word has a very particular association for me. It equates to what is known as “realised eschatology”, which is to say, that “what it will be like in paradise is in some way already here now”. To live sustainably is to live in a way we can go on living as far as the eye of human history can see. The behaviours we see advocated are behaviours that have no expiry date.

The problem comes with what goes with that. When people imagine this sustainable utopia, they think only about what would be sustainable for them, ignoring any groups for whom the idealised situation they have imagined might be more of a dystopia. A world with no single use plastic straws may be sustainable for human life as a whole, and for people who have no need of single use plastic straws, but is not sustainable for those who have that need.

Once we are primed to look for them, we see these utopias and their erasure of disabled people in many of society’s responses to its greatest problems.

And we see the same tendencies not just in response to specific issues but in wider disciplinary developments. The recognition of the social and economic roots of many existential threats has driven a series of counter-movements. Whether it is the rapid growth of the basic income movement or the rock star status accorded to economists like Thomas Piketty and Yannis Varoufakis, people have become increasingly aware of the growing flow of money towards the “rentier”, the person who creates nothing but takes millions of tiny slices of money from those who do. In contrast to the seeking of rent, we are encouraged to seek the creation of value. And in contrast to the pursuit of individual wealth we are encouraged to seek collective, even global, justice.

Social commentator Oli Mould brilliantly skewers the way that “creativity” has been co-opted for commercial gain, turned solely to the “creation” of the wealth. Economists like Kate Raworth critique our obsession with economic growth as the one thing that is truly good regardless of the consequences. Both place this socially and environmentally catastrophic obsession in contrast to the creation of things far more valuable: sustainability (again), collaboration, collective pursuit of a common good for humans and their home.

Alongside this academic movement, we see new strands of activism driven by the principle of effective altruism. These movements stand against giving any kind of value to capital. Capital is not for accumulating, it is just one of many tools for bringing about greater goods, for helping to solve wicked problems and make the world better.

Yet each of these necessary critiques proposes an alternative, a utopia that erases the disabled. True, they cease to value human beings for the wealth they can generate. But instead they value people for the good they can do. What is ultimately valued – justice, sustainability, a harmonious ecosystem – may be a more noble goal than money. But it is still something other than life itself, and a person’s value remains linked to how much of it they can produce. And for disabled people, some of whom are still able to produce less of it, or rely on the use of more resources for the production of the same amount, that still leads to a discount on the value of their life.

And in those instances where the disabled do come to the fore – where the focus is on attaining social justice, on bettering people’s lives and opportunities – it is as the objects of important and valuable actions and not as their subjects.

So what is happening, and why is it happening?

To understand this we need to go back to understanding that these new ways of living are descendants of realised eschatologies, of Utopia, and Saint Augustine’s idea of the City of God. If we needed reminding of the importance of eschatology in this context, and the way in which an abled world so grossly misunderstands disability and our relation to the assistive tools that help us navigate the world, we need only go back to the response to the death of Stephen Hawking, and the images and descriptions that imagined him “freed from his chair” in some cosmic afterlife.

Our natural response to existential threats to our world is to imagine a utopia, somewhere sustainable not just by accident but by dint of the sustainable behaviours of its citizens, and then to try and create it by acting as good citizens of that mythical place. Movements such as effective altruism, behaviours such as drinking without straws, all of these are attempts to embody utopia. And a key element to them is this – they attempt to hold in balance the statements “this is a perfect home for me” and “this is a perfect home for us.” There would, after all, be no point to a utopia in which humanity as a whole flourished but each individual was miserable. Indeed, we would recognise the very idea made no sense. The problem comes because in practice “we” is simply a universalised form of “me” and so the imagined utopias may feel as though they work for everyone but for some, including the disabled, they do not.

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. Countless thinkers, at first religious, and then secular also, have believed 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.” Those who cannot adopt these behaviours belong in Augustine’s other city, the earthly city, the one which will pass away, which has no future..

Of course much of this widespread and deeply embedded erasure of disabled people remains unconscious. This implies, of course, that we live in a world in which it doesn’t occur that the disabled are people, co-citizens in the City of God.

I want to suggest we can why this is can be found in Martha Nussbaum’s exploration of the concept of disgust. Nussbaum argues 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 want to suggest that when people construct their utopia, or decide upon the behaviours that distinguish those who belong in the city of God, what happens most readily is that they establish rules to keep out the things that disgust them. It makes sense that this would not, in most cases, be conscious, because what is disgusting is, as we have seen, what is held to be “animal” and the belief of the “chosen” is precisely the opposite, that they are not animal. It therefore makes sense that they would think “no true human could argue with that rule” and when a disabled person argues “but I cannot do this” it is natural for people to say “I hadn’t considered that” because they have only considered what they held to apply to humans, to those above the animal. This goes back, of course, to a long tradition of raising the spiritual above the bodily. Indeed, what people find, reflexively, disgusting about the disabled, is not that their bodies are disordered but that they are bodily at all.

The irony of course is that a movement that seeks to rid itself of humanity’s approach of dominion to its environment has based its principles on a fundamental distinction between humans and the world in which we live. It is this distinction that can lead to human exceptionalism, and that exceptionalism which can lead activists to see some as “inevitable victims”, “a price worth paying for the survival of the species.” But of course a survival built on the “price” of the oppressed and the vulnerable will create a foundation myth which perpetuates that idea in perpetuity.

So what is the answer? Might we have to accept that if we cannot secure a future for us all then the only thing we can justly do is to manage our exit from the stage with as little impact on the non-human environment as we can?

Or can we think about our planet as a home for us all, abled and disabled alike? Before we even begin to imagine answers we encounter a further problem. Our freedom to imagine is unequal, not just because of the imaginative space denied us by realised eschatologies, but by the very nature of the world in which we live. The abled can choose, when imagining their perfect home, whether or not the disabled form a part of it. The disabled cannot. For many of us, the presence of others is not a choice but a necessity. We rely upon them to provide the assistance we need to live let alone to flourish. We cannot choose with whom we would share our utopia.

And yet now, the assistive possibilities of technology, from artificial intelligence to robotics, offers the prospect of, one day at least, imagining a utopia in which other people may or may not be there according to our wish and not our need.

This is an enticing glimpse of equality, yet even the briefest examination reveals an underlying horror. To choose a future without a whole group of people – to place oneself above them and assume the right to exclude them – is that not truly horrific? Well, yes, and that is the horror that disabled people face at present.

I want to end by suggesting an answer that goes back to what I said in my introduction to this panel – that we prioritise phenomenology. I want to ask what might it take for what we could call a new phenomenology of the city – not a City of God where humanity – imagined and imagining – is experienced only by the abled, but a glorious, sprawling viscous mass of myriad differently navigable pathways to be in connection with which IS to experience the human?

I want to suggest that we spend more time exploring a phenomenology of the imagination. That we consider “what does it mean for me to imagine myself in this future?” Because something so simple will require the persistence both of “I” and of this space in which my being resides, but then we need to explore the further question “can we imagine us in this space?” Not ask, not as a question that is answered by a theory, but explored, phenomenologically-together through co-imagining – in this future do I persist? In this future does the space itself persist such that I imagine myself inhabiting it? Does this same space share some of the contours as your imagining of the space in which you persist? And I would suggest in this context that just as the “I” of you includes the abledness that aids your navigation through the world, the “I” of me includes whatever technology or assistance enables me to navigate there also.

This co-imagining might present itself as a negotiation of stories, experiences, voices and awarenesses which, far from seeking to transcend their circumstance, seek specifically never to transcend but to remain rooted – in the animal-experiential-material “stuff” that insists our fates are bound together, that the needs of the few are equal to the needs of the many, that no life is a price worth paying for the survival of any other life. “Exclude us from that negotiation,” we must remind, “and either you exclude yourselves – or you place yourselves transcendently above us, place us beyond your boundaries – and just as across history those who cast out the hag gave her a sorceress’s power over them, you will make us into the monsters that haunt you.”