Introduction
Imagine a society in which the generation of wealth is the primary goal. Where success is measured solely by income. Children are left uncared for by parents obsessed with generating more income. Older people are left in squalid conditions, provided with the minimum level of care by the lowest paid workers. Those who could not face leaving their parents or children in these dire situations and undertook care themselves are left in poverty and social exclusion. Exhaustion, loneliness and hardship are the order of the day for these carers, even if cheered by the rewards of the caring itself. Women who undertake the majority of care and make up the larger portion of older people suffer significantly more than men. The ever increasing number of older people is seen as a nightmare scenario, a route to catastrophe, rather than a cause to celebration. Disabled people are viewed as a burden and inconvenience.
(Herring, 2013: 320)
When I read Caring and the Law by Jonathan Herring (2013) this quote stood out and captured much of what I had been considering while writing. I look at his work in a little more detail in Chapter 2, but for now, I simply want to use this evocative, yet meaningful way of imagining society and ask these questions, specifically in regards to intellectual disability. Namely because my research answers these questions with yes, and this is unacceptable. So I ask, can you imagine a society where a child is excluded from any meaningful education because of their intellectual impairments, or a mother who is troubled with suicidal and murderous thoughts because she feels alone in her community? Can you imagine a society where a young woman is sexually assaulted by her school peers, and no one believes her, or a society where meeting a friend is always a struggle and having a baby is inconceivable? Can you imagine a society where a young man dies in a bath, in care? Just imagine a society where an intellectually disabled adult is poor, excluded, shamed and left without dignity or respect (see also Vorhaus, 2016). Thinking through these questions and issues, this book draws upon empirical research, personal reflections and theoretical discussion in an attempt to provoke responses and action for a deeper understanding and change-making process regarding the private troubles and public issues (Wright Mills, 1959) that permeate intellectual disability.
Intellectually disabled people have generally been excluded and previously there has been no political movement to do anything about this (Carlson, 2005, 2010; Carlson and Kittay, 2010). This book therefore is premised on proposing a care ethics model of disability, so that we can begin to map, understand and take forward caring and care-full work, not only for intellectually disabled people but for all people. I suggest there are three spheres of caring and care-full work, but these are currently populated with many care-less spaces.
- The emotional caring sphere
- where love and care are psycho-socially questioned
- The practical caring sphere
- where day-to-day care is carried out relationally
- The socio-political caring sphere
- where social intolerance and aversion to difficult differences are played out.
These three spheres interact in complex ways. They are the foundation of a care ethics model of disability and are grounded in social and political relations that seek caring legal and cultural processes. Ultimately I suggest a need to contemplate caring work and relationships rather than care work per se.
Thinking about and imagining care, social justice, ethics and social inclusion in the context of intellectual disability is tricky, especially when, by comparison to physical disability, far less has been written about intellectually disabled people’s lives, and particularly about those with profound and multiple impairments (Vorhaus, 2016). As a heterogeneous group they are not considered full citizens, they certainly struggle to be heard, and at worst are dehumanised (Carlson, 2010). Also there is often talk of giving people a voice, but I am not suggesting here that we give people a voice as such; they already have one – whether that is verbal or otherwise. Yet I do not want to lose sight of the fact that those who ‘speak’, or are ‘speaking with’, or being ‘spoken for’ are not being listened to. Moreover, a challenge arises when those in power make decisions based on attributes such as rationality, language, and roughly equal physical and mental capacity, as rudiments for participating in citizenship (Nussbaum, 2006). This clearly excludes many intellectually disabled people from contributing to, and participating in, civil society. However, participation in social, and one might argue political, life is essential to being human, in whatever form that might take. After all, Hannah Arendt (1998: 7) reminds us that the language utilised by the Romans, who were perhaps the most political of people, used the words ‘to live’ and ‘to be among men’ or ‘to die’ and ‘to cease to be among men’ [sic]. Therefore, ‘[n]o human life, not even the life of a hermit in nature’s wilderness, is possible without a world which directly or indirectly testifies to the presence of other human beings’ (Arendt, 1998: 22).
Human beings live together, regardless of their intellectual capacity, relationally and with reciprocity (Vorhaus, 2016). Their labour (life itself), their work (worldliness), and their action (serving political bodies) make up the human condition of being together (Arendt, 1998). Notably the Maasai people in Kenya believe that the definition of being human is to live among people, and other cultures define being a person in relation to kinship ties rather than individual ability (Stienstra and Ashcroft, 2010). I am not criticising Western capitalist society here through comparison to other cultures or suggesting for one moment that inhumane atrocities do not occur across the globe. Also I do not propose that being alone is inhumane or dehumanising. Nevertheless, carelessness, exclusion, lack of love and friendships, oppression and incarceration are dehumanising. As, ‘[p]eople do not spring up from the soil like mushrooms. People produce people. People need to be cared for and nurtured throughout their lives by other people, at some times more urgently and more completely than at other times’ (Kittay, 2005: 1; see also Geertz, 1973). Thus, the emotional caring sphere, where love and care are psycho-socially questioned, the practical caring sphere, where day-to-day care is carried out and the socio-political caring sphere, where social intolerance and aversion to difficult differences are played out are critical when considering intellectual disability. This is largely because particular discourses around genetic disorders, normative social interaction, and reflections on what it means to be human seem to suggest that intellectually disabled people are better off dead or denied existence (Habermas, 2003; Pfeiffer, 2006; Shakespeare, 2006; Slee, 2011, 2012; Stienstra and Ashcroft, 2010). I suggest, however, that this is not the case. Political life, education and citizenship, family and care-full practices, representations of disability, personal and intimate relationships, and other such aspects of social life ought to be at the forefront of social and political change; not pity and tolerance at best, abuse and murder at worst.
Indeed, throughout time intellectually disabled people have caused more than a little concern for the legal system, policy makers, social cohesion and reproduction, and the vitriol that has been levied at them, and about them, in the past century is evident. As David Pfeiffer quotes from past social reformers and eugenics protagonists, ‘feebleminded’ people are ‘“an evil that is unmitigated”, a poison to the race, and their “very existence is itself an impediment” to civilization’ (2006: 83). Intellectually disabled people have been abused, stigmatised, excluded, violated, controlled and killed, and yet they are human beings embodying personhood. A century or more of violence, implicit or explicit, towards particular people needs radical reform, politically, legally, socially and psycho-socially, because if other humans, those in power, those in everyday life, agree that intellectually disabled people are beneath them on some kind of human hierarchy, then the task is hopeless. I do not adhere to the notion that the task is hopeless, but see it as a struggle nevertheless. Indeed, we still have some way to go, as Eva Kittay (2010) suggests, with certain realms of philosophy remaining fixed on the notion that intellectually disabled people can be likened to pigs and dogs when it comes to being human and non-human.
This was highlighted in an open discussion at a conference, where Kittay was asked by the presenter, a fellow philosopher, ‘well, can you tell us some of these morally significant psychological capacities in which you think that human beings, and let’s talk about real ones, so the ones who are “profoundly mentally retarded”, to use that term, in which they are superior to […] pigs or dogs’ (Kittay, 2010: 408 [emphasis in original]) and as Kittay shakes her head at this question, the speaker says ‘you have to put up or stop saying that’ (2010: 408). Kittay believes that intellectually disabled people are superior to dogs and pigs. Essentially the speaker wanted to hear Kittay’s view on the psychological differences (regarding capacity) between these animals and intellectually disabled people and if she could not do that, she was to keep her mouth shut; she was to remain silent. Anecdotal this might be, but we are talking about academics who teach future philosophers and promote the moral acceptability of killing impaired foetuses – enabling emotional distance for the student. This is preferable, for some philosophers, to discussing with students real intellectually disabled adults living everyday human lives, and then contemplating their rights to life (Kittay, 2010). Therefore, considering science, eugenics and norms regarding human life, Lennard Davis, for example, suggests a link between eugenics and statistics that is largely due to the fact that the ‘central insight of statistics is the idea that a population can be normed’ (2006: 6)1, meaning we can have standard and non-standard populations (‘normal’ and ‘abnormal’) and therefore standard and non-standard human beings. Reflecting upon the ‘standard’ and ‘non-standard’ human being can be particularly useful in times when there is confusion and uncertainty around scientific research such as bioethics and the ‘right to life’, spurious links between autism and immunisations, the rhetoric of ‘inclusive’ education for disabled children, oppressive disablism and sexism, representations of disability as well as difficult experiences for family members or others caring for and with disabled children/adults.
Normalcy: the politics of sameness and being human
The hegemony of normalcy is, like other hegemonic practices, so effective because of its invisibility. Normalcy is the degree zero of modern existence. Only when the veil is torn from the bland face of the average, only when the hidden political and social injuries are revealed behind the mask of benevolence, only when the hazardous environment designed to be the comfort zone of the normal is shown with all its pitfalls and traps that create disability – only then will we begin to face and feel each other in all the rich variety and difference of our bodies, our minds, and our outlooks.
(Davis, 1995: 170–171)
Normalcy is pervasive as we ‘live in a world of norms’ (Davis, 2006: 3).2 Moreover, these norms relate to the human, personhood, civilisation, morality, the body, health and so on. But is there any point in discussing norms and normalcy, when, quite obviously, to be ‘normal’ is not necessarily something that you are or that is; and really, who wants to be this ‘normal’? Normality is a perception rather than a reality, yet more often than not differences are positioned as ‘malformed’, ‘defective’, spoilt, stigmatised, or ‘deformed’ (Davis, 1995; Goffman, 1990). However, that is not to say that to feel any of these differences is not an experienced reality and damaging or dangerous to the human being. By reflecting upon history in relation to difference, with respect to both aesthetics and intellectual capacity, I understand that recent past narratives form discourses on tolerance and have been woven into legislation and cultural perceptions of ‘abnormality’. After all, to ‘tolerate’ something or someone is more appealing than persecution or prejudice, and the latter has been obvious to many on the receiving end of this. Yet, when a person is tolerated for their behaviour or what they look like, they are put up with, not necessarily accepted; this could be considered violent. I suggest that difference (and diversity) ought to be embraced rather than negotiated in yet another attempt to normalise the human being. Indeed tolerance, ideologically, is the dark side of diversity as neoliberalism utters empty rhetoric (see also Davis, 2013). We need to recognise that we are all distinctive; to look away and deny difference is inhumane and care-less.
Hence, to be aesthetically normal, to behave within a set of social norms, may be both culturally and historically specific, but has social change via modernity described and prescribed what ‘normal’ is in an attempt to create a more desirable being, based on that which is undesirable? In the case of disability and impairment, a girl who dribbles so much that she wears a rolled up hanky in her mouth; a boy who bangs his head with his hand when distressed; a teenager who is unable to construct a sentence on paper and a child who is unable to negotiate sexual/social boundaries are all considered ‘abnormal’ and deemed to ‘lack something’ – the regular human condition? They do not fit into the construction of what it is to act in a socially acceptable way – to be a fully functioning human being. Who defines this norm? Who says what is normal and what is not? The socio-political caring sphere, including the ‘experts’, social media, image makers and politicians, all seem to play a part in the dissemination of knowledge around differences and sameness, but how is this constructed? What is a ‘normal’ image, behaviour, education, pupil, mother, family, friend or lover? For example, in the case of intellectual disability and education, the identification and assessment of a learning difficulty in the UK is a process tied up in a language that privileges good behaviour and academic attainment. In thinking about this construction of a norm, does ‘normal’ behaviour, intellect, aesthetic presentation, mothering, friendship and intimacy make us human – no it does not.
Philosophically, on being human, Frierson (2013) asks, what can I know, what ought I to do, what may I hope, and ultimately, what is the human being? He does so by interrogating Kant’s work in detail. Of course, simply put this could be problematic in the case of intellectual disability for not all people have the capacity that enables self-reflection and agency as we know it (Vorhaus, 2016). Actually asking the question, as I do here, ‘what is a human being?’ (or rather ‘what is it to be human?’) really means thinking about ‘who am I in relation?’ If a human being is fractured, intellectually, aesthetically, physically, emotionally, then the vulnerability of a sense of self, our own being, is questioned, even if that is reflected upon with someone else. What Frierson (2013), through Kant’s anthropologies, attempts to do is to understand the human being. Crudel...
