The PMLD Ambiguity (Book)

I’ve just learned that it’s been two years since The PMLD Ambiguity was published by Karnac Press (March 2014) so it seems fitting that the first blog post is a tribute to that work!

The PMLD Ambiguity is a book I wrote with Dr Debbie Watson (Reader in Childhood Studies at Bristol). You can read an excerpt from the book by clicking here.

Overview 

In many ways the PMLD Ambiguity is a controversial and complex book. It provides the first critical review of the “PMLD field”, challenges some of the core concepts that the field relies upon, and explores alternative terrain in order to provide a counter view to the deficit-based accounts of children with PMLD found in the literature.

For those new to the field, “PMLD” or “profound and multiple learning disabilities” is a term used in the UK to refer to children with the severest forms of cognitive impairments. Typically, children with PMLD are deemed to experience “global developmental delay” and present (at least cognitively) as infants. If you pick up a book in the PMLD field you’ll probably end up reading all about the pre-verbal stages of development, how children with PMLD have yet to pass through these stages, and how they struggle to understand and engage with the world around them.  Based on this understanding of developmental delay, a range of interventions and assessment tools have been devised which aim to push children with PMLD through the earliest stages of development. These interventions are often used in special schools, and some teachers have argued that children with PMLD would never benefit from participating in mainstream schools until they reach an appropriate developmental level.

In the PMLD Ambiguity we make several challenges to the above picture. Because of space constraints we cannot cover everything, but of particular note are the following challenges:

  1. We demonstrate that the core ideas in the PMLD field are often based on old-fashioned and contested psychology. For example, in Chapter 3 we explore the cognitivist literature that has inspired the PMLD field. What we present is not a coherent theory of child development, but a range of perspectives which are in some respects radically opposed to each other, particularly with regards to the nature and emergence of social awareness in infants. If children with PMLD are defined first and foremost as being “developmentally delayed” then this debate calls into question the very meaning of “PMLD” itself and shakes our confidence in the definition.
  2. We show that alternative understandings of consciousness and cognition are needed if we are to fully appreciate the rich experiences of children with PMLD. Classic psychological accounts hold that children with PMLD lack the ability to explicitly represent the world and so struggle to engage with it. This contrasts to a phenomenological account of consciousness and cognition. From a phenomenological perspective, first meanings are not thematically represented but enacted; it is through action that we make sense of the world, and this sense is intuitive or tacit. Instead of presupposing that some children are too disabled to participate in mainstream life, a phenomenological perspective asks how different environments afford alternative opportunities to develop a sense of self, other and surrounding world. This exciting theory opens up debate about the nature of learning for children with PMLD by moving away from “neuro-reductionist” accounts and situating learning in broader contextual factors.
  3. We present evidence that mainstream (or what some would call “inclusive”) classroom environments can support the social and communication skills of children with PMLD. The book presents my doctoral research project on the topic. The project involved working longitudinally and intensively with a young boy with PMLD called Sam. (The “richly interpretivist” methodology is described in detail in the book). I observed Sam one day a week in a mainstream school and one day a week in a special school for an academic year. What became apparent was that Sam was more socially active in his mainstream school than in his special school. Furthermore, Sam demonstrated greater levels of social awareness (understood in terms of intersubjectivity and agency) and developed increasingly diverse communication skills when around mainstream school peers. Near the end of the project he transferred these skills to his special school and began to initiate interaction with his special school peers

The role of theory

The PMLD Ambiguity received strong critical reviews from Tillie Curran (Disability & Society) and Rob Ashdown (PMLD Link). However,  both reviewers noted the demanding nature of the theory and the complexity at the heart of the book. Good theory is meant to challenge our most basic presuppositions about the nature of the phenomena we are addressing, problematising what we take for granted, daring us to think differently, and forcing us to ask new questions. (I’m sure the reviewers agree.) As a Postdoctoral Fellow I find myself once again knee-deep in challenging texts, searching for answers (and having fun creating new problems!). The reading can be daunting and frustrating but at the same time exciting and compelling. It’s clear that we have a world of academic resources at our fingertips: post-structuralism, phenomenology, enactivism, etc. Each of these areas challenges the preconceptions we have of ourselves and our relationship to each other and the world . Whilst empirical research is necessary, it is theory that allows us to state what the problem is in the first place and how we address this problem. The PMLD Ambiguity is an exercise is advancing “PMLD theory” and will be the first of many publications in the topic.

 

Full reference

Simmons, B. & Watson, D. (2014) The PMLD Ambiguity: Articulating the Life-Worlds of Children with Profound and Multiple Learning Disabilities, London: Karnac.

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