Over the past 12 months I have been involved in several conversations regarding the use of first-person in writing. Writing in first person means using the term “I” to refer to the author, for example “I like folk music”, as opposed to third-person “Sheridan likes folk music”. In writing about people with PIMD, writers may be faced with the dilemma of, do I write in first-person or third?
For people with PIMD it may be clear that the person themselves has not “written” the document, however the writer may choose to write the document as if the person was saying it themselves. There is a belief that writing in this way may get the reader to “listen” more to the document and see the person as a person with views and perspectives. This practice is very common in adult disability services. There are many reasons, however, to be extremely cautious about using first-person.
Does “pretending” that the person wrote information further disempower the person? What if what has been written is not in fact true (e.g. “I hate folk music”)? What if what is written about the person may be encouraging responses which deny the person’s rights (e.g. “When I suck my finger, hold my hand down in my lap”)?
Issues of first-person use have been explored by Michael Smull and others involved in person centred planning (thanks to everyone on www.elpnet.net that helped me to navigate this information). Smull and Sanderson wrote that “one of the abuses of person centered planning that can be found with distressing frequency is to change traditional plans from third person to first person and call the result a person centered plan” (see http://www.virtualward.org.uk/silo/files/think-before-you-planpdf.pdf). Smull discourages the use of first-person language unless the person has clearly been involved in what has been written – this means that they have said it using symbolic forms and they have confirmed it on review of the document (he also recommends testing out the ongoing truth of the statement). If first-person is used because the person has expressed it, he recommends that facilitators are very mindful that they haven’t used leading questions to generate the quotes. He suggests that if the writer and all people who know the person are not 100% sure that this is something that the person would say if they could, then using third person is recommended.
I think this is very sound approach. What do you think and how does this reflect practice in your organisation?
What is a profound intellectual and multiple disability?
Finding a definition of profound intellectual disability is by no means easy. In some places, people with PID are people who have an IQ of 20 and under, however, establishing that somebody has this level of intellectual functioning is very difficult. So essentially this definition is not terribly functional in practice because there are few tests that can discriminate this level of ability, in particular when you also throw in physical and sensory impairments as well. Some researchers have chosen an cognitive age equivalency to determine if somebody has a profound ID. These cognitive age equivalencies have varied across researchers and nations with some people reporting it as under 12mths, 24mths, or IDC-10 reporting 3 year equivalence (I am aware of some of the pros and cons of using age equivalency but shant go into it now).
The definition that I find best at the moment is the one by PMLD Network in the UK (in the UK an intellectual disability is called a learning disability):
Why set up the PIMDA weblog?
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).
Why 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.