I got to thinking tonight about LB’s agency. I suppose this is because the work I’m doing at the moment is looking at the inclusion of people with learning difficulties in research. As usual, the research doesn’t bear an awful lot of resemblance to the experiences of people I know (including LB).
So, the research is suggesting that people with learning difficulties don’t have the capacity, language or wherewithal to take part in research. Arguably (with apologies for the bluntness) sort of pretty obvious on one hand. But then, I was thinking about the way in which LB leads his life. It’s severely constrained in some ways. He’s nearly 17 and can’t go out on his own. He can’t count to ten and needs constant reminders to wash, dress, clean his teeth, use deodorant, etc.
He wrote his letter to the mermaids. He received a reply from the Caribbean mermaids when I was away last week, via school. This reply came with a bag of shells and letter saying that he should put the shells under his pillow to have magical dreams of mermaids. The shells are under his pillow. The letter is on the table next to his bed.
He interacts with people without hesitation, concern or artifice. He’s effective at manoeuvring himself into the spaces he wants to be (next to the biscuit tin, on youtube, in the prime space for confetti throwing at a wedding).
He managed to scoff numerous deserts at his grandparents 70/65th birthday bash without anyone noticing. He’s very good at looking after/managing the things (Horrible History books, youtube access, diecast lorries, birthday trips) that are important to him.
For years, when he was younger, it was always a family joke that he only wanted to open one present on his birthday or at Christmas. The thing he really wanted. The thing he’d often asked for. If he was given that first, he wouldn’t open anything else. That caused angst among his siblings and us because we wanted him to open all his pressies, in a traditional way. We tried to order presents in advance so that the thing he wanted was not first. So that we could enjoy, or preserve, the tradition of present opening.
I can’t help thinking that this work stuff around inclusion in research is an example of the present opening. The focus is on the tradition, ritual or expected behaviour that isn’t relevant to those who aren’t being included. We aren’t looking at what is important for, and to, dudes like LB.
Trouble is, I’m not sure how the academic community ever will, effectively.