A thesis submitted in partial fulfilment of - Etheses - Queen Margaret ...

An unwillingness to discuss disability within family settings may be seen as positive, the
result of a conscious attempt to place emphasis upon the things a child can do rather than
those they cannot. Eddie, a participant in research carried out by Tom Shakespeare, Kath
Gillespie-Sells and Dominic Davies, states:
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I was born with my impairment, I had four brothers, none of whom were disabled
people...I was brought up believing I was the same as my brothers... which had its
advantages which was not being mollycoddled. The disadvantage is I was never
taught anything about disability and the wheelchair, about disability and identity
(Shakespeare et al, 1996:50).
Family members may avoid talking about disability because they feel it is in the best
interests of the disabled son, daughter or sibling not to do so. As Read (2000) points out,
other family members are not automatically experts on disability, and can usually only act in
what they perceive as the immediate interests of the disabled person. In Eddie‟s terms, from
the point of view of the disabled person looking back, this can be regarded as incurring costs
to be paid later when he encounters the world beyond the family as an individual on his own
terms and finds his preparation inadequate for the barriers and discrimination he encounters.
Dona Avery suggests that families of disabled people can find themselves endowed with the
stigma of disability through relationship (Avery, 1999:117). This implies that a reason for
avoidance or denial of the subject may be to do with an attempt at personal disassociation.
Not talking about disability is perhaps perceived as making disability less real. While this
may work for other family members, it can, as Rose indicates, create a real sense of
frustration:
I think I definitely try to put a brave face on it, and try and show the cheery side, and
try to be positive, and try and get on with things… whatever they may be… er… you
don‟t want to have to do that with your family… (l.1.675ff.)
Rose is saying that in her experience there is no backstage area where one does not have to
keep up an act. Brian expresses anger he feels about not being able to be open about who he
is with his family.
There‟s a tension… erm… within family… I‟m not open to my family or to my
partner‟s family… erm… I don‟t call myself a disabled person to their face… being
open and more explicit in that context is just… opening up a lot of grief for myself…
erm… my father has coped by being in complete denial… that‟s… and… to some