Services in Australia all tend to subscribe to the philosophy of inclusion. An implied part of inclusion is friendship and other sorts of social networks. But how has concepts of friendship been applied to people with PIMD? What does friendship mean when thinking about people with PIMD: what does it mean to the person with a disability, what does it mean to the friend, and what does it mean for support services?
My best friend, Keith McVilly (who also happened to have looked at friendships of people with mild-moderate ID for his PhD) and I discussed this today. I think it is worthwhile to start with my own bias. I have friends who have PIMD. I have also battled with services to allow me to exercise my friendships, experiencing the red tape and the reluctance of some services to go into “risky territory”. I think we have a long way to go to understand how inclusion is to occur for people with PIMD in environments that are risk aversive.
Here are some thoughts that came from Keith and me. Mainstream friendship is usually conceptualised as a relationship of mutual respect with equality and reciprocity. Within this relationship each person takes on different roles at different times. What people get out of friendship is difficult to encapsulate; perhaps it is a sort of spiritual connectedness. But what happens for a person with PIMD whose ability to take on different roles in the relationship is severely compromised? Is this still a friendship if they can never initiate the contact with the “friend”. One way of looking at friendship with people with PIMD is to look at it from the view of the friend and in this case friendship seems to comprise of the following thoughts: (1) “I think this person likes being with me”, (2) “I get something out of being with this person”, and (3) “I see this person as a valuable human being”. This way of viewing a friendship is not without its problems as the person with the disability cannot directly confirm or negate the statements. In some ways it is like the dyad where one person thinks the other person is their friend, but the other person doesn’t like them at all.
I certainly have no easy answers when it comes to friendship with people with PIMD. However, I do know that spouting the importance of inclusion without even thinking of what the relationships might mean to both potential partners, and not considering the, shall I say, logistics of relationships, is doing people a disservice. For example, what does an organisation do if somebody wants to take a service user with PIMD out for dinner (do they ask the friend to get a police check, ensure that a staff member accompanies the person, say it is too risky and hope the friend goes away and doesn’t stir the pot, or do they just let the person take the house van, give the person their medication, and sweep them up with wine and spaghetti). What would different friendships look like if the person had particular care needs such as PEG feeds, needs to get out of their chair, and assistance in the bathroom? Would it mean that past staff members who are familiar with the attendant care needs would be people who would best able to spend time with the person? Or must friends only be people who don’t have disabilities, and haven’t worked with the person… Furthermore are we putting people at risk by letting them be with people who are not under the jurisdiction of our organisational policies and practices?
Clearly there are many things that need to be thought about if we are to really work towards (not just talk about) the inclusion of people with PIMD.
ps: for some research looking at friendship in the community after living in an institution, see: Bigby, C. (2008). Known well by no-one: Trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community. Journal of Intellectual & Developmental Disability, 32, 148-157.