The friendships of people with intellectual disability

1. The friendships of people with intellectual disability Anne-Marie Callus Disability Studies Unit University of Malta

2. IASSID Europe Congress Pathways to Inclusion Vienna 14 – 17 July 2014

3. Research methods used • Focus group with seven persons with intellectual disability, members of a self-advocacy group I support. • Observations from my encounters with people with intellectual disability and from other research carried out with them.

4. Reciprocity in friendships • Recurrent motif in themes identified • Changes power relationships between people with intellectual disability and non-disabled people through: • Helping each other • Sharing information • Sharing a laugh

5. Help • Friends are people who help you • Carla: someone who helps me • Margaret: whoever helps you is your friend

6. Help = Support • Do you need help to live on your own? • You can help him to go out on his own. (Callus, A.M. 2013) Support = being helped to do things on your own terms Friends are people who help And people who help in this way are friends

7. Reciprocity in helping • Carla: Friends, we help each other. • Carla: Not only they give you. You have to give and they give you. Help arises naturally from their interactions with their friends.

8. Disabled persons and professionals Finkelstein discusses how the relationship between disabled persons and professionals can “become reformed into one of equality” (1981:63). Carla extends this concept by placing staff who help in an empowering way within her circle of friends.

9. Friendship with staff Mason, Timms, Hayburn and Watters (2013): • in interviews, some people with intellectual disability identified friendlike qualities in some of the staff who work with them. Some people identified particular staff members as their friends. • research participants express frustration at not being able to become friends with staff because the latter have boundaries to keep.

10. Sharing personal information Jeremy: Okay, you’ve bought something. And she [the support worker] sees you coming in with it. And okay she has to write it down. But then there’s no need to call your supervisor and tell her ‘Jeremy bought that thing’. Sharing confidential information about a person can render him powerless

11. Sharing personal information The first day she was with her, Isabel asked her the name of her son. She told her ‘That’s a personal matter’. That is not right. It is important that one is not cold and proud with disabled children. You should be friendly and joke with them. We want to be friends with our assistants. Bonello, Bonello and Callus (2012: 32) Withholding information to keep boundaries is problematic for the disabled person .

12. Sharing personal information • Keeping personal information confidential • Sharing personal information with friends • Reciprocal respect of personal information • Sharing/not sharing information affects power relationships

13. Maintaining boundaries Bowler and Nash (2014) and Parkes and Jukes (2008): ‘personal caring’, the exchange of gifts and phone calls outside working hours are seen as posing potential boundary problems. But from the standpoint of people with intellectual disability, these actions can be markers of the friendships they want to foster with their support workers.

14. Maintaining boundaries Cooper (2012) ‘It is very easy for clients to become confused . . . and . . . imagine that a worker is their friend’. Focus on how abusive relationships can start from crossing smaller boundaries. But for Carla, Margaret and Jeremy their friendship with staff is not imagined.

15. Paid and non-paid relationships Bowler and Nash (2014) and Parkes and Jukes (2008): clear distinction between staff who are paid to be in the lives of people with intellectual disability and friends who do not receive any such payment. Carla, Margaret and Jeremy problematise this distinction by identifying support workers as their friends.

16. Paid friendship ‘The concept of paid friendship has been proposed as a way of describing a distinct and consciously selected form of social relationship. . . . . Because of the absence of the concept of paid friendship, sociologists have tried to make these lived relationships fit into other pre-existing categories such as paid work or social friendship. Because it has not fitted, it has been judged that something is wrong somewhere.’ Woodin, 2006: 255.

17. Reciprocity in friendships • Recurrent motif in themes identified • Changes power relationships between people with intellectual disability and non-disabled people through: • Providing empowering help • Mutual sharing of information • Sharing a laugh

18. Sharing a laugh Carla: Felicity tells me ‘a granny like you’ to banter with me. I tell her ‘I don’t take offence from children’. [Laughter and clapping] Margaret: Well done! Through a shared joke, which turn on its head the idea of people with intellectual disability as eternal children, Carla sees her friendship with Felicity being reinforced. Taylor et al (2007: 74-75): ‘We don’t want staff to stop the joking: it’s good when staff can take a joke.’

19. Friendship at the workplace Jeremy: and even to show you your work. That’s a sign that he wants you to learn. . . . It’s true that sometimes we need telling off, but we’re still friends. Co-workers who enable him to learn and progress in his job are Jeremy’s friends

20. Family members as friends Jean: My cousins are my friends. . . . We go for barbecues . . . And they’re having a party at their house at the weekend . . . My aunt also invited me . . . We’re very close. Eh. I’m very close with them . . . It’s always been like this. . . . Even outings.

21. Are these friendships reciprocal? Reciprocity is important – but how much do they find it in the people they identified as their friends? • Do Carla’s support workers see her as one of their friends? • And Jeremy’s co-workers? • And Jean’s cousins?

22. The views of people with intellectual disability tend not to be taken into account. It is important that those who live and work closely with them seek to understand how the people with intellectual disability in their lives interpret their relationship and seek ways of becoming better friends with them.

23. References • Bonello, A., Bonello, I. and Callus, A.M., 2012. Inclusive education: the insider experience of two students in Malta. In A. Azzopardi (Ed) Roots to Inclusive Education: a question of wellbeing. Lambert Academic Publishing. • Bane, G., Deely, M., Donohoe, B., Dooher, M., Flaherty, J., Iriarte, E. G., et al. (2012). Relationships of people with learning disabilities in Ireland. British Journal of Learning Disabilities, 40(2), 109-122. • Bowler, M., & Nash, P. (2014). Professional boundaries in learning disability care. Nursing Times, 110(21), 12-15. • Callus, A.M. 2013. Becoming self-advocates: people with intellectual disability seeking a voice. Peter Lang.

24. References • Cooper, F. (2012). Professional boundaries in social work and social care: A practical guide to understanding, maintaining and managing your professional boundaries Jessica Kingsley Publishers. • Emerson, E., & McVilly, K. (2004). Friendship activities of adults with intellectual disabilities in supported accommodation in northern England. Journal of Applied Research in Intellectual Disabilities, 17(3), 191-197. • Finkelstein, V. 1981. Disability and the helper/helped relationship. An historical view. In A. Brechin, P. Liddiard, and J. Swain, eds. Handicap in a social world. Milton Keynes: Hodder and Stoughton in association with the Open University Press, pp 58-63. • Mason, P., Timms, K., Hayburn, T., & Watters, C. (2013). How do people described as having a learning disability make sense of friendship? Journal of Applied Research in Intellectual Disabilities, 26(2), 108-118.

25. References • Morris, J. 1997. Care or empowerment? A disability rights perspective. Social policy and administration, 31 (1) 54-60. • Parkes, N. and Jukes, M. 2008. Professional boundaries in a person-centred paradigm. British Journal of Nursing 17 (21), 1358-1364. • Taylor, J., Williams, V. Johnson R., Hiscutt I. and Brennan, M. 2007. We are not stupid.London: People First Lambeth. • Woodin, S.L. 2006. Social relationships and disabled people: the impact of direct payments. Ph.D. thesis, University of Leeds. [Accessed 17th June 2011]. Available from http://www.leeds.ac.uk/disability-studies/archiveuk /woodin/FinalThesis.pdf.