From individualism to co-construction and back again:Rethinking research methodology for children with profound and multiple learning disabilities

Children with profound and multiple learning disabilities (PMLD) are said to experience severe congenital impairments to consciousness and cognition stemming from neurological damage. Such children are understood as operating at the pre-verbal stages of development, and research in the field typically draws conceptual resources from psychology to devise educational interventions and assessment tools. Criticism has been levelled at studies that treat children with PMLD as objects of research rather than subjects to be consulted. Proponents of the latter view have attempted to redress the situation by exploring how personal experiences can be gleaned through adapted qualitative methods. Debate about methodology in the PMLD field tends to coalesce around these individualist polemics: either children with PMLD are positioned as incompetent and lacking voice; or researchers are positioned as lacking the appropriate tools to gain access to such voice. This paper offers an alternative position to the individualism of post-positivist/constructivist approaches, identifying the need for a critical and participatory approach that sees knowledge about children with PMLD as situated and co-constructed through regular and longitudinal interaction between the researcher, children with PMLD, and significant others. Context to this argument is provided by exploring the application of this approach to an inclusive education research project for a child with PMLD

Challenging the developmental reductionism of ‘profound and multiple learning disabilities’ through academic innovation

In this paper we show how developmental definitions of ‘PMLD’ in the academic literature can reduce children with PMLD to the status of ‘non-persons’. We highlight some of the innovative dimensions of our work which challenge this status quo. These include the application of new theory and research methodology, and our studies of the social interaction of children with PMLD. We argue that these aspects of our research help reinstate the value of children with PMLD in the academic literature and arguably have important practice implications. However, we conclude that much more work is needed in our fight against the exclusion and degradation that some children with PMLD face

From Individualism to Co-Construction and Back Again:Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities

Central carbon metabolism. Each arrow in each panel corresponds to one of the 51 internal reactions we consider. Metabolites are indicated by their acronyms (see Additional file 2). Boxed metabolites correspond to 13 essential biomass precursors. Note that 4 metabolites (accoa, g3p, f6p and e4p) are shown more than once for visual clarity. Metabolic pathways, including glycolysis/gluconeogenesis, pentose-phosphate pathway, citric-acid cycle, oxidative phosphorylation, pyruvate and glutamate metabolism are distinguished by the colored and dashed rectangles. Anaplerotic reactions and glyoxylate shunt are highlighted using the purple and green arrows respectively. The figure is taken by permission from [40]. (TIF 2163 kb

The PMLD Ambiguity:Articulating the Life-Worlds of Children with Profound and Multiple Learning Disabilities

This book challenges the ways we experience, think about, and interact with children described as having profound and multiple learning disabilities (PMLD). Contrary to received wisdom, the book starts from the premise that traditional psychological approaches operating in the “PMLD field” are overly reductive and constrain our abilities to listen to and learn from children with PMLD. This in turn runs the risk of maintaining exclusionary practices such as segregated education, where such practices are predicated upon the notion that some children are too disabled to participate in mainstream life. To address the situation the authors explore new terrain in three areas: theory, research and practice. The authors draw from phenomenological notions of embodied consciousness and introduce how this gives rise to novel ways of understanding the agency of children with PMLD. This critique leads to examination of interpersonal methodology as a means to access the experiences of children with PMLD, which in turn culminates in a research project examining how inclusive education could support learning for a young boy with PMLD. What becomes apparent through this story is that children with PMLD engage with the world in ways far more complex than existing approaches can take account of