by Shoshana Dreyfus (Sydney Corpus Lab affiliate), University of Wollongong

In this blog post I want to write about a socially-significant piece of corpus linguistic research investigating the lives of families who have a family member living with intellectual disability (ID) and who uses challenging behaviour. In Australia, people with ID and challenging behaviour are able to get a service called Behaviour Support, which, in the best-case scenario, takes a holistic look at the intellectually disabled person’s life and all the settings they live in to try to understand why they might be resorting to challenging behaviour to get their needs met. Often these people have difficulty communicating, which also means they have very little control over their lives. This and the challenging behaviour are all part of the picture. In the ideal world, a Behaviour Support Practitioner helps them sort this out. It’s often a pretty long and involved process which involves observations in all settings, meetings with families, carers and support workers, putting together a behaviour support plan, training everyone to respond differently, and monitoring, adjusting and evaluating the progress. When Australia moved from a state-by-state disability service environment to a national one with the National Disability Insurance Scheme (NDIS), the research unit I was working with at the time at UNSW wanted to find out things like how long it took, what worked, what didn’t work and so on. This was intended to feed back to the NDIS about these services so they would have a better understanding of Behaviour Support and how to fund it moving forward.

For the research, I travelled across Australia interviewing such families about their Behaviour Support services. We aimed to get 50 families into the study but only ended up with 30 and only 25 of those interviews were useable. One day, the project team was having a meeting when one of the team members said, “Will you check out the I-statements!”. What he was referring to was all the I-statements the families, mainly mothers, were uttering in the interviews in response to the questions I asked them (for example, I decided to move from Adelaide to Sydney in 1995). At that point I decided to do just that: check out the I-statements. One of the things that is interesting about this cohort and data is that not a lot is described nor understood about the lives of families in Australia who have a member with ID and challenging behaviour, but as one of those families, I know from the inside that that life is often hard. Research (mainly from overseas) confirms that these families face a range of challenges that can include interpersonal violence, destruction of their home and environment, sleep deprivation, high levels of depression and stress, lower quality of life generally and social isolation. Having a data set that could, in an unsolicited way, shed light on what these families’ lives are like seemed an important line of inquiry.

For the study I used AntConc to retrieve all the I-statements, because it seemed like they could shed light on what people themselves say about their lives. As Figure 1 shows, there were 3508 I-statements in the data, but around 2/3 were discarded due to not being relevant: those related to reported speech (ie reporting on a conversation they had had with someone), emotions, idioms and comments relating to the interview itself were excluded, leaving 1376 I-statements. Then I examined the process types (verbs) that followed the word “I” and sorted them into their general types: material, mental, verbal and relational (after Halliday 2004). Following this, I looked more closely at the material process clauses (126) because I was interested to see what parents DO in this life, to make it more visible to those who do not know about it.

Interrogating the material processes revealed that parents primarily talked about undertaking different activities and actions that related to themselves and their family member, and to others, including their peers, their service providers and their systemic or political context. These actions clustered into six main areas, shown in Figure 2, from most to least frequent, which we have identified as related to management, education, support seeking, resistance, assistance and change.

At the risk of getting too detailed, but also wanting to show the great number and type of things parents have to deal with in their lives with a family member with ID and challenging behaviour, I am adding here a couple of further layers that these categories were divided into, ie there were many sub-types to each activity. For example, in “manage things”, there were five aspects of life with their person that parents spoke of managing (Figure 3).

And some of these were able to be classified even further! For example, the management of day-to-day life with their person comprised many different repetitive, sometimes daily, activities. Figure 4 gives you an idea of the extent of extra management work parents engage in.

From this data set, there are a few quotes that really stood out, as while the corpus tool allowed me to identify the I-statements, going back to the data and reading the I-statements in context is a critical part of the research. For example, one parent exasperatingly said the following (material I-statements bolded):

… in the days when we were dealing with all that service provision, you know, that roundabout that you are on. I used to show them my calendar. I used to hold it up to them and go, “Look. Look. This is what I deal with every single day. This is how many phone calls I have made today. This is who I spoke to today.” And I once drew a map: doctor, specialist, psychologist, psychiatrist, day program, blah blah. I said, “This is the number of people I am dealing with every day as well as trying to get the meal on the table.” It is so overwhelming.

Of course, there is much more to say about this data, so many more analyses that could be done to make visible what goes on in these people’s lives, but I haven’t gone there yet. I think what’s useful is not only the study and what it reveals about the fairly hidden lives of an at-risk cohort, but also how corpus tools can combine with other linguistic tools of analysis to illuminate important meanings in language data. This is especially important in areas such as that investigated in this study, where our results could give visibility and voice to families with a family member living with intellectual disability who uses challenging behaviour.

You can read more in this article or find me here.