You may be wondering why I have set up PIMDA. There are two key reasons for setting up PIMDA. The first is to find out what are issues to / for people with PIMD in Australia. At the moment it seems like individuals have issues, however the capacity for responding to issues as a collective are limited. I do not know any agencies that respond in particular to the needs to people with profound intellectual disability. If there are let me know.
The second reason for setting up PIMDA was to strengthen the networks of people interested in improving the lives of people with a disability. There are many individuals out there working towards this goal – do we know who they are? Sometimes we may know people from a particular discipline or content area (e.g. knowing the people from the “communication” discipline) but not know people from the other disciplines that can complement working forward (e.g. knowing who is leading the way in terms of advocacy for people with PIMD).

Some of you may be thinking isn’t it wrong to label people? I believe that in order to improve the lives of people with the most severe disabilities it is important to develop an identity. An identity acknowledges that everybody is different (i.e. heterogenous) yet there are groups that share similar characteristics and issue areas. Identity development has played a role in fighting against discrimination for many groups of people, such as woman, gay people, and aboriginals (see Ian Parsons’ Cripples, Coons, Fags and Fems for further discussion of identity).
I have chosen to use the identity term “profound intellectual and multiple disabilities” or PIMD. I believe that it is most accurate in clearly describing this group of people: people who have profound intellectual disability alongside other disabilities such as physical, sensory, and health issues. PIMD is also the term used by IASSID and has international saliancy. In the UK the term PMLD (profound and multiple learning disabilities) is used in line with their use of “learning disabilities” instead of “intellectual”. Terms such as high support needs or complex needs, cover a broader group and are easily confused. Similarly just using the term severe disability does not capture the specific degree of cognitive impairment experienced by people with PIMD.
Acknowledging that someone has a PIMD is not a values statement; it is a statement that recognises that the person experiences the world in a different way from most people and requires the people around them to adapt the way that they are so that they can share meaning with that person.