Life Transitions and Support Needs of People with
Disabilities
Doctoral Research
University of Sydney
Overview
People who are DeafBlind or dual sensory impaired constitute
a small and diverse group who receive very little attention
from researchers and policy makers alike. The majority
of research conducted in DeafBlindness is medical in
nature (e.g., genetic research into particular syndromes);
focuses on children who are DeafBlind (e.g., assessment,
communication and social skills issues); or does not
seek to understand the perspectives of individuals experiencing
DeafBlindness directly (e.g., focusing instead on sibling
or family perspectives).
This research project aims to develop an in-depth understanding
of the everyday lives of adults who become DeafBlind.
This research involves individuals who have been born
with a single sensory loss and later "become"
DeafBlind with acquisition of a second sensory loss,
and also individuals born with unimpaired hearing and
vision, who later "become" DeafBlind through
acquisition of dual sensory loss.
A bio psychosocial disability framework (Thomas, 1999)
is adopted to explore how impairment effects and psycho
emotional dimensions of disability interact with disabilism
(exclusionary and oppressive practices and processes)
in the life experiences of people who are DeafBlind.
This research utilizes ethnographic research methods
within a grounded theory methodological strategy. The
researcher will directly engage in shared experiences
with a group of adults who are DeafBlind via participant
observation in 'real' and 'virtual' environments. Additionally,
in-depth interviews directly exploring the perspectives
of a small number of adults who have become DeafBlind
will be conducted.
This research will increase our understanding of a
group seldom considered in research or practice. Also
it may inspire people in contact with this population
to critically reflect on exclusionary and oppressive
practices which construct disability. The findings may
inform and challenge conceptualizations of support from
a focus on measuring needs (in terms of time or amount
of support required), to a focus on the equally important
dynamic interpersonal nature of support provision and
the support assessment process. The manner in which
support is provided, the nature of the support provider
and support receiver relationship, may have as great
an impact on constructions of disability as does an
absence or presence of support.
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