Enabling everything: scale, disability and the film The Theory of Everything

Abstract

This article looks at the representation of scale in the 2014 film The Theory of Everything, identifying moments that relate to three concerns: firstly, how disabled people experience scale issues at an all too practical level in daily life; secondly, how Hawking’s experience of scale at the level of both body and mind is (a)typical of the way it is experienced by disabled people generally; and, thirdly, how a focus on the film can prompt some rethinking of perspectives both within disability studies and within the conceptualisation of scale more broadly.

Keywords:

• scale
• disability
• The Theory of Everything
• Stephen Hawking

The Theory of Everything (2014) presents two aspects of one person – the physicist and the disabled person – and two starkly contrasting phenomena within that same person: a rapidly evolving physicist’s mind, and a body that is slowly but inexorably growing unresponsive to that same mind’s simplest physical promptings. A mind that meanders through the infinity of the universe in a body that struggles to bring a spoon to its mouth. Two immediately contrasting planes and scales of concern, then.¹

In The Theory of Everything the representation of disability is one that medicalises and that individualises the body (Imrie 2014). It focuses on impairment, defined as ‘the loss or limitation of physical, mental or sensory function on a long-term or permanent basis’ (Disabled People’s International 1981). However, this bodily determinism is only one of the perspectives that heave into view. Article 1 of the United Nations Convention on the Rights of Persons with Disabilities, although not explicitly defining disability, states that:

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. (United Nations 2006)

This is the social perspective, one that disabled people themselves proposed through the Social Model of Disability (Oliver 1990a) and which reverses the causal chain to explore how socially constructed barriers have disabled people with a perceived impairment (Barnes and Mercer 1997). As Merleau-Ponty (2002) argues, how space and place are constructed around me shapes my ‘being in the world’. In the social model of disability, because of the shift from body to place, ‘who I am’ becomes defined by ‘where I am’. That ‘where I am’ creates a mismatch between the environment and my body through the barriers that disabled people are constantly faced with. Consequently it is not so much the physical and cognitive differences that define us, but the space and place we are in.

Like Stephen Hawking in the film, disabled people are forced to watch the world from between the posts of the stair banisters or from between the fibres of the jumper they struggle to put on: where these simple acts represent the physical barriers to movement, communication and the most routine of daily activities. We are surrounded by spaces and places that assume everyone can walk, see, hear, and understand. Whilst the impairment is there, and very often there to stay, there are many difficulties that can be overcome if only designers, planners and service-providers would pay attention to detail. The scale of disabled people’s requests sometimes may seem too absurdly demanding to many, but in reality it is often absurdly non-demanding on the operative scales of everything and every day: that one extra inch on a pavement or the use of that different font on the bank statement can make a difference between a disabled person being able to do something independently or not.

These claims may seem too fastidious to those few who forget that disability is intrinsic to the human condition (Zola 1989); that it is not the ‘tragedy’ of a few, a ‘terrible chance event which occurs at random to unfortunate individuals’ (Oliver 1990b), but a phenomenon that concerns all of us. Life is about scales of disability that any one person emancipates themselves from or reconciles themselves to at different points across a lifetime. This is why it is not about ‘us’ and ‘them’, the disabled and the abled, but where we all stand as we navigate our own position along that spectrum at different moments in our life. Therefore it should not be viewed as ‘abnormal’ or ‘extraordinary’ but as part of a collective and indeed pragmatic responsibility to be thinking, planning and designing our spaces and places in such a way that they are truly inclusive. Universal design describes the concept of designing all products and the built environment to be aesthetic and usable to the greatest extent possible by everyone, regardless of their age, ability or status in life (Centre for Universal Design 2008). Assistive and mainstream technology can indeed help to bridge the gap between the limitations imposed by impairment and the disabling environment, but this is not enough. ‘This is temporary’ says Stephen to Jane when she presents him with his first wheelchair, in the film. Stephen Hawking started with using a manual wheelchair. As his disease progressed, he changed to a powered one, and this enabled him to play with his children and mobilise on his own. A computerised voice system was later installed onto the wheelchair so that he could communicate and continue his work and writing. While Hawking was developing science, science was itself developing to allow him to move around and to communicate. An appropriate shifting scale of reciprocity, if you like.

Towards the end of the film, Hawking claims: ‘No matter how bad it seems, there is always something you can do. While there is life there is hope’. But it does not only depend on the courage and will of the individual; our struggles would all be in vain if we are not given adapted level fields to participate fully in community life. Stephen Hawking’s access to the almost inconceivable scales of physics are a demonstration of just how much more broadly depends on the everyday environment being made scaleable to disabled people.

To push this further: the opportunities to participate fully in community life depend on having accessible environments. Achieving accessibility in turn depends on physical access, access to information and communication, personal assistance and other forms of live support. Apart from the support of ever more sophisticated technology, Stephen Hawking also had the support of his wife, Jane, who remained by his side for 25 years and ‘just carried on’, as she wrote in a recent article in the Guardian (Moorhead 2015). But to work with a different scale now: how typical is this of the experience of most disabled people? To begin with, Hawking’s intellectual powers are not typical of most human beings. They are not even typical of most physicists. The combination of this brilliant mind with the advent and progression of motor neurone disease makes the man even more extraordinary in the eyes of many. Intuitively, we immediately get the scale of the contrast. But what of those disabled people for whom there is no obviously uplifting dimension to juxtapose with their impairments?

For people who have an impairment, how they experience disability is unique to each person. But because disability is not only individual but also social in nature, the experience of disability is also predicated on the spaces and cultures that disabled people occupy. All too often, these spaces comprise physical and social arrangements whose default mode is not to cater for disabled people’s impairment-related requirements. As long as disabled people have to fit into these spaces and cultures, their needs and their lives will be seen as extraordinary.

But there is another way of looking at it. Before the advent of inclusive education, in many countries attendance at school was predicated on the child having achieved typical developmental milestones (walking, talking, being toilet trained), even if the milestone itself is completely irrelevant to academic performance. Disabled people’s achievements are still all too often placed within traditional conceptions of development. As a result, no matter how ordinary disabled people’s actions are, they are still seen as being extraordinary, and as having been achieved ‘despite’ the presence of disability. This is evident in The Theory of Everything when the film, more than once, addresses the question of how Stephen Hawking could father three children in his condition. When Jane’s mother questions the paternity of the third child, who was conceived after motor neurone disease had reached an advanced stage, it is not only Jane’s relationship with Jonathan (the third child) which is brought into the equation, but also, even if implicitly, Hawking’s ability to engage in sexual intercourse.

As long as we hang on to a conventional idea of human development, disabled people’s achievements and their everyday needs will continue to be seen as extraordinary. As long as catering for disabled people’s impairment-related needs is not seen as being ordinary, for them ordinary activities remain extraordinary.

As Hawking himself has so aptly put it:

‘In twenty years, men may be able to live on the Moon. In forty years we may get to Mars. In the next 200 years we may leave the solar system and head for the stars. But meanwhile, we would like to get to the supermarket, the cinema, restaurants. (Hawking 2007)

In the film, the swirls of milk in the coffee mug represent Hawking’s theory of time. They can also be taken to represent a disabled person’s life. Disabled people’s lives do not start and progress linearly but consist of starts and stops, going backwards and forwards, achieving in one area and regressing in another. But this is the design of a life that is different but also whole, dynamic and unique in its own way and as ordinary to the disabled person as any other. The concept of ‘reasonable accommodation’ balances the requests that are made by disabled people with what different entities and service-providers argue that they can offer. Thanks to the entrenchment of this concept in law and to its implementation in practice, many disabled people now enjoy a quality of life that would not have been thought possible just a generation ago. But the work carried out to provide accessibility, in all its facets, for disabled people is still seen as ‘accommodation’, and therefore as an adjustment to what is considered to be normal, typical, ordinary. What is more, it has to be ‘reasonable’ – the demands must be realistically scaled!

So what will make us say ‘Well, at least that’s something’? The discipline of Disability Studies has also made a significant contribution to increasing knowledge about and awareness of the socially-created aspects of disability. Disability Studies has also contributed to the critique of culture. What, in turn, can the discipline take from a film like The Theory of Everything? Imrie (2014) argues that the understanding of disability as a spatial phenomenon is relatively underdeveloped in Disability Studies. In the film there are plenty of depictions of the disabled person located within a specific space. That it happens to be a person who has made it his lifelong ambition to find the key to explain outer space provides us with an irony that highlights even more the confining spaces in which he lives. When Stephen can no longer go upstairs and has his bed moved into the kitchen, he quips that ‘it’s handy for breakfast’; but what it also means, of course, is that, compared with his wife and children, he only has half a house. We can therefore speak of ‘spatial injustice’. The construction of places and spaces around the ‘body normal’ is not acceptable any longer: a politics of disablement must be a politics of space that has regard to the different ways in which disablism is manifest in and through place. This politics is necessarily one of resistance to dominant representations of disability and the body and asserts the normality of impairment and the body as a dynamic, transient subject, never fixed nor stable (Imrie 2014, 27). All citizens, no matter the shape, size or physical or cognitive abilities, should be able to interact without unnecessary barriers with space and time. To transpose to a different context the remark that Stephen Hawking makes when he and Lucy look proudly at their three children, then, and only then, we could all say together ‘Look what we made’.

Acknowledgement

This paper was first presented at the conference on Scale organised by the European Society for the Study of Literature, Science and the Arts (SLSAeu) in Malta, June 2015.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. In the midst of his search for a theory of everything that might bring general relativity and quantum field theory to cohere – linking physics at the macro and micro scales, so to speak – Hawking's own world was increasingly becoming more physically restricted. In the context of this article, the term ‘scale’ is therefore used not only in its usual conventional sense and in awareness of Hawking's work with different scales in the background, but also to reflect the contrast between the mundane activities that non-disabled people can take in their stride and the disproportionate effort required for disabled people to negotiate the mundane in their daily lives.