Now that the result of this year’s Nine Dots Prize is out, I feel freed to work on the book proposal that constituted my entry. Here is the paper in which I outline my thesis that disabled people have been erased from many well-meaning visions of the future, for example in environmental circles, through the adoption of the theological and philosophical notions of holiness, utopia, and disgust. I make the rather mild suggestion that the answer lies in dedicating our resources to provide infrastructures to the world that allow different groups to occupy it in the way they need.
In 2017-18, the response to two of our greatest scientists perfectly framed a massive and intractable problem that most people whose job is to deal with massive and intractable problems still don’t realise we have.
David Attenborough’s impassioned plea for the future of our oceans in Blue Planet Two was like a hard surface hitting a supercooled liquid. A population that was already primed for the need to do something instantly leapt to a thousand different actions to tackle the issue of single use plastics the programme had so eloquently outlined.
Let me press pause there for a moment while I explain the problem I mentioned at the beginning.
The increasing urgency and awareness of existential threats to human life on earth has required a rethink of what it means to call our planet home. For many, from academics to activists, this has involved imagining a utopian future in which we exist as part of a harmonious ecosystem. And the behaviours that allow this steady and continuous existence are embedded into a model of how we should live now.
It would be tempting to see this development as an emergence of the best elements of our nature, pitted in an existential battle against the worst.
But while for many the threats we face have made it clear how precarious their home on earth is, for the disabled it is the response to those threats that has illustrated just how fragile our tenancies here actually are. From measures to tackle single use plastics to the socio-economics of degrowth (whether that is challenging the idea of humans as consumers or calling for a step back from the rate of adoption of technology), the utopian 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 others) – that we disgust them – and raises the question whether the same space, our planet, can ever be home to all of us.
OK, let’s unpause there. As the disabled community hit back at bans on single use plastics, most notably disposable plastic straws provided by coffee shops, the responses of “can’t you just use…” followed by any number of well-intentioned but unsuitable alternatives mounted up.
Shortly after the screening of Blue Planet Two, Stephen Hawking died. As had been the case with Attenborough’s plea, much of the response to Hawking’s death played out online through memes, GIFs and video. It was almost inevitable that this image would appear:
(picture of Stephen Hawking, standing, with his wheelchair in the foreground, by Mitchell Toy)
The disabled community’s response to the notion that Hawking had been “freed” from his wheelchair was as swift and robust as it had been to the banning of single use plastics. One marvellous response was the creation of the “Nyan Hawking” video. Drawing on the hugely popular nyan cat meme, this video portrayed an animated hawking wheeling through the stars in his chair leaving a trail of rainbows in his wake.
These incidents reveal two critical points about the way we conceptualise things as a society:
- People think about concrete issues in terms of utopias. That is, their answer to a specific problem will be to imagine a utopia in which the problem no longer exists. Furthermore, the kind of utopia people imagine is not simply a somewhat secular ideal world. It is tinged with centuries of religious tradition – it is heaven on earth. Less Thomas More’s “no place” than Saint Augustine’s City of God.
- When people imagine a utopia, we think only about what would be ideal for them, ignoring any groups for whom the idealised situation they have imagined might be more of a dystopia.
Once we are primed to look for them, we see these utopias and their erasure of disabled people in many more of society’s responses to its greatest problems.
We see these problems with urban planning, with the smart cities of the future. The city of Oxford recently launched an Oxford 2050 consultation with its residents. Drawing on this, the University of Oxford launched its own strategic plan for its estate and infrastructure. Both were accompanied, of course, by a series of beautiful illustrations conjuring up idealised spaces in which residents would surely dream of living. Their dreams were made easier by the placement of people inside the drawings, enticing current residents to imagine themselves as citizens of this wonderful future. Not one illustration included a person in a wheelchair or using a cane to navigate.
And we see the same tendencies not just in specific instances such as these 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, 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 money. Money 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 more noble a 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, who 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?
What is happening has its roots in the familiar idea of Utopia, and the earlier and perhaps less familiar idea of the City of God.
Utopia, literally “no place”, is a mythical land where people flourish. Their behaviours are harmonious and all their needs are met. Our natural response to existential threats to our world is to imagine such a utopia, 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 the 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.” It is a small step from this to claiming a superiority, and a further tiny step to claiming the right to prioritise your own wants over those of others.
Yet despite the widespread and deeply embedded erasure of disabled people, much of it remains unconscious. In many ways this is more damaging, of course, because it amounts to living in a world in which it doesn’t occur that the disabled are people.
The key to understanding what is at the heart of this erasure 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, she 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 colonial approach to its environment has based its principles on a fundamental distinction between humans and the world in which we live.
So what is the answer? How might 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 not equal. 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, the technology that made these existential questions so urgent offers an enticing prospect. Now, the assistive possibilities of technology, from artificial intelligence to robotics, offers the prospect of 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 closest examination reveals an underlying horror. To choose a utopia 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 suggest instead that the first steps to a solution might lie in re-examining how we occupy space. Specifically how we co-occupy space. Urban studies gives us a very good place to start with this. In particular the idea that our cities should not be zoned into planned single use areas. What happens when this is not allowed to occur can be seen by looking at a space such as the Southbank Undercoft in London, which has become home to a world-renowned skateboard park. This park co-exists in a space with theatre goers and diners, pedestrians and tourists. There is neither forced separation nor coerced intermingling. Rather the different occupants of the same space come together or remain apart as they choose and as suits all of their needs and desires. The space allows for each (this site was the subject of a bitter planning dispute which saw a proposal to move the skate park to a designated space rejected).
We may be tempted, as disabled people, to make the case that we are not disgusting, that we are not animal. Or we may be tempted to remind others of their own animality. But might it not be far more useful for each of us, and for the planet we must share as home, to co-occupy that space in a way that works for both of us? Providing an infrastructure that will allow disabled people to do this alongside others will not only allow both to live at home freely and autonomously. For the sake of our future, it will also allow disabled people the space and the tools to pursue their own answers to our existential problems, and to do so from parameters truly different from those being applied at present, giving us a far better chance as a while of making a home together in the long term.
This is not an off the peg answer, of course. Rather it is a suggestion for the direction research should be taking – into new materials, new ways of building, new ways of considering how spaces are used. And equal consideration of all the different needs that arise from being at home in the world rather than assuming that “we” is simply a multitude of “me”s.