This is a book which aims at a paradigm shift in our thinking about intelligence, disability and society. It raises profound questions that challenge the status quo, and makes uncomfortable reading for professionals who (like myself) have built their careers around the lives of people who carry the label of learning disability. For this alone, it is worth your attention, as you will constantly be forced to reset your moral compass as you negotiate the rapids and falls of the argument – whilst simultaneously experiencing a degree of frustration at the occasional perversity.
Goodey’s previous work (Goodey, 2011, 2015) was the result of a lifetime’s research into the cultural history of intellectual disability, a massively impressive and scholarly enterprise combined with an intense appreciation of the real lives of those concerned. His insights into the contingent nature of the concept of learning disability have clear implications for practitioners and self-advocates working in the field (Bradshaw and McGill, 2015). This new book distils some of this information, but is essentially a polemic against exclusion and discrimination. This has undoubted force and value at a time when marginalised groups are under attack as never before in my lifetime, but my overall sense is that in the end, the perspective is fundamentally distorted by the need to tie all the evidence back to the fundamental construct of inclusion phobia.
In the Introduction, Goodey asks what is learning disability and what is its place in the view that human beings have of each other? The first question can be answered by looking at textbooks and websites – but becomes problematic as soon as a historical view is adopted to show how contingent and accidental are some of our most cherished beliefs about intelligence and its manifestations. Here I think the book is very successful in exposing the incoherence of the concept, The second question however, which – it could be argued – is more important for those concerned, is too often addressed it seems to me through anecdote. Let’s begin, then, with the concept.
Goodey’s plan is to deconstruct our notions of learning disability and reframe them as inclusion phobia – that is, a condition which has existed since time immemorial resulting in the identifying and scapegoating of outgroups. We can, as he points out, close down all institutions overnight, but this does not necessarily mean that the people concerned become part of ordinary life. This argument is laid out in his second chapter on exclusion. The following three chapters deal with intelligence, difference and causation, and present a digest of the information from the previous book. Historically he demonstrates that intelligence, associated with the elevation of abstract reasoning is the defining characteristic and the ultimate achievement of humanity. This, he argues convincingly is in fact no more than a status claim, activated in the fields of religion, science and education. Notions of ability and normality are predicated on the existence of disability and abnormality. Intellectual disability is for Goodey the primary and fundamental outgroup, raising the question of why it is ignored by radical academics who have challenged exclusionary discourse (Foucault, Girard and Deleuze in the frame here). The chapter on causation considers classical and early modern beliefs that disability was due to supernatural forces (magical or diabolic), reinforcing the view that at the bottom of the ladder of nature was a class of “reprobates” who were scarcely human and therefore candidates for euthanasia. With the advent of scientific methods, a self-perpetuating cycle ensues, where fear of abnormality is one motive for genetic research, the outcomes of which are to identify proliferating categories of disability that can be circumvented. As would be expected, he is lucid on the eugenics movement and its links with today’s screening technologies. This chapter ends with a challenging section on the orthodoxy of coping theory to explain – or even predict – parents’ reactions to the birth of a disabled child, where there appears to be no room for celebrating the infant who is rather than the infant who might have been. Disability is always viewed as an absolute negative, and because the causes are now understood as genetic, it is located within the child. Goodey next addresses development, arguing that the notion is no less contingent than that of disability; mainly he has in his sights the way in which developmental frameworks can lead to an unending infantilisation of the person with a learning disability. His caveats about the goal orientation and spatial metaphors of progression in development theory hit the mark, but he does not engage with any current explanatory theories of change and learning across the lifespan, and his dismissal of Piaget and Vygotsky ignores the ways in which their ideas have been extended and applied (e.g. Daniels, 2001; Demetriou et al., 1992; Wood and Wood, 1996). By contrast, the chapter on assessment is illuminating, particularly his final comments about the way in which speed – an absolute socioeconomic requirement in today’s society, has become constitutive of intelligence. Two chapters on autism follow, again demonstrating the historical contingency of the concept, with the rise in diagnosis marching in step with the focus on social intelligence and empathy in both work and private relationships.
What is missing then, from this scholarly and eloquent overview of the evolution of learning disability as a concept? There are several omissions – although Clapton’s work on ethics of inclusion with its emphasis on personal relationships is referenced, he makes no mention of the considerable body of positive research on friendship other than to disparage one paper (see, inter alia Reinders, 2008; Kershi et al., 2013); there is no mention of language and communication which from my perspective is one of the most critical dimensions of inclusion. In this context, it is developmental models that have given rise to successful strategies to support interactions (Goldbart and Caton, 2010; Hewett, 2011). Initiatives such as the neurodiversity movement are dismissed because, in Goodey’s view, the person with severe learning disabilities will always be excluded. This strikes me as unduly pessimistic; the extension of practices such as sensory friendly environments, for example, are likely to have wide and far-ranging benefits (Silberman, 2015). His panacea is community inclusion and natural supports, starting with the family, and is the burden of the many anecdotes which are threaded through the book as evidence that there can be an alternative. These include references to countries where services are underdeveloped or non-existent, but he does not seem to consider the counter-evidence that both in the past and currently, people stigmatised as slow thinking, or stupid, or persuadable, faced discrimination and outright bullying and violence (see Quarmby, 2011; Richardson et al., 2016) leading families to ask for special services and schooling. A more nuanced view is provided by researchers who consider both sides of the issue (see, e.g. the chapters in Ingstad and White, 1995) He does not deny that people need support, but he only touches on how this can be achieved in his final chapter, placing his faith in person-centred approaches. I really wanted to read much more of an engaged discussion of partnerships between support services, families and policy makers, and one, moreover informed by the voices of people with learning disabilities and autism themselves – the most glaring lacuna in this book (see websites such as www.people-first.co.uk; http://wrongplanet.net).
Jonathan Swift can claim to have written one of the most successful campaigning fables of all time. A Modest Proposal for Preventing the Children of Poor People From Being a Burthen to Their Parents or Country, and for Making Them Beneficial to the Publick (1729) suggested that the remedy for the Irish famine was for the poor to cannibalise their infants. Goodey’s writing has something of Swift’s savage indignation, but without the irony. My feeling is that inclusion phobia works best as a powerful metaphor that challenges us to rethink our perceptions, in the same way that Swift’s essay makes us look with new eyes at poverty, famine and a despised outgroup. Since Goodey’s purpose is precisely to refute the notion that learning disability or autism are natural, biologically determined categories, it’s bizarre to say the least to find him advocating formal recognition of yet another socially constructed diagnosis – leading to further proliferation of DSM conditions. His conclusion is a call to liberation that starts with the inclusion of people with learning disabilities, through genuinely person-centred approaches. Goodey’s powerful voice, allied to that of the many self-advocates, campaigners and researchers who have learning disabilities themselves, could really make a difference.
