I recently submitted this to the PMLD Network mail list in response to a discussion regarding the term profound and multiple learning disability.
Coming from a country that does not consistently use any term to refer to people with PMLD, I am a supporter of the use of the term PMLD (or PIMD profound intellectual and multiple disability). In Australia, this population is frequently invisible. Their are no collective groups like PMLD Network operating for lobbying or sharing information. People with PMLD tend to be subsumed into the “high support needs” group, but as stated by PMLD Network, this term is problematic as it is overly inclusive. Furthermore the high profile people in the high support needs group tend to be people with challenging behaviours, whose needs may be very different from people with PMLD and often responded to with more hast.
There will always be people for whom we do not know what their intellectual abilities are; for whom physical disabilities mask cognitive abilities. But I don’t think this is a justification for dismissing the concept of intellectual disability altogether. Understanding intellectual disability is a way of trying to understand different realities, different motivations. Intellectual disability is not a moral judgement, it is a statement that somebody understands the world in a different way: memory, concentration, attention, learning, planning.
I recall Karen Bunning writing a few years ago about the expectancy cycle. Having low expectancies of somebody is damaging, and long recognised to be problematic. But having overly high expectancies of somebody can be equally damaging in setting the person up to perpetually fail with goals that are not achievable. How many times have you seen an intervention set up, only to have the person fail (and blame often hastily attributed to support staff, rather than evaluating the appropriateness of the intervention in the first place)? How many times have you gone along to training session or read a book and thought that the author had no understanding of the people you support, as all the techniques were based on having a symbolic understanding?
I think the term PMLD is useful and supports a shared understanding. Hopefully, this understanding of the meaning of PMLD is tempered by an understanding that we can never be 100% sure of cognitive level, that everyone is an individual, and that everyone should be supported to have the best possible life that they can have, regardless of a diagnostic category.