Transcript presentation - University of Malta

The friendships of people with
intellectual disability
Anne-Marie Callus
Disability Studies Unit
University of Malta
IASSID Europe Congress
Pathways to Inclusion
Vienna 14 – 17 July 2014
Research methods used
• Focus group with seven persons with
intellectual disability, members of a selfadvocacy group I support.
• Observations from my encounters with
people with intellectual disability and from
other research carried out with them.
Reciprocity in friendships
• Recurrent motif in themes identified
• Changes power relationships between
people with intellectual disability and nondisabled people through:
- Helping each other
- Sharing information
- Sharing a laugh
Help
• Friends are people who help you
• Carla: someone who helps me
• Margaret: whoever helps you is your friend
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
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.
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.
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.
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
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
.
Sharing personal information
• Keeping personal information confidential
• Sharing personal information with friends
• Reciprocal respect of personal information
• Sharing/not sharing information affects power
relationships
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.
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.
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.
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 preexisting 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.
Reciprocity in friendships
• Recurrent motif in themes identified
• Changes power relationships between
people with intellectual disability and nondisabled people through:
- Providing empowering help
- Mutual sharing of information
- Sharing a laugh
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.’
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
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.
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?
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.
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.
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.
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), 13581364.
• 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.