Uppeldi og menntun - 01.01.2010, Page 151

Uppeldi og menntUn/icelandic JoUrnal of edUcation 19(1–2)/2010 151
rannveig traUStadÓttir, Hanna BJörg SigUr JÓnSdÓttir og Helgi þÓr gUnnarSSon
Growing up with disability: Stories of childhood
experiences by young people with physical impairments
aBstraCt
This paper is based on a research project titled Growing up with disability: A study of the
experiences of disabled children and youth, which examines the lives and experiences of
disabled children and youth. This is a five year study (2006–2010) with the overall aim
to explore disabled children’s and young people’s perspectives and understandings
of disability, impairment, their social relations to family, peers and professionals, and
how they negotiate disability in everyday life and interactions with others. Theoretical
underpinnings are interdisciplinary; the study is placed within disability studies
which emphasizes social and relational understanding of disability, we have also been
inspired by the new sociology of childhood and critical life course theories. In this
paper we present one part of the Growing up study which focuses on 12 young people
aged 18–25 who have physical impairments. Participants were recruited through
disabled people’s organizations and personal connections. In addition, participants
in the study identified other young disabled people and encouraged them to take
part. Although all the participants had physical impairments there was a wide range
in the type and severity of their impairments. The study was approved by the Ethical
Committee of the Faculty of Social Sciences at the University of Iceland. In order to
protect the identity of the participants no names or identifiable features have been
included in the paper.
Qualitative methods were used to collect data. Major methods of data collection
were participant observations where we spent time with the young disabled people
in their everyday activities. Data were also collected through open-ended interviews
with the young disabled people and through focus groups. An interview guide was
used to collect similar data from all the participants but during the interviews we
encouraged the young people to speak freely about the issues and experiences they
felt were important and tell us in their own words about their lives.
Findings indicate that the young people had mostly positive experiences of growing
up with disability. Their family life was happy and they had good relationships with
parents, siblings and other family members. Their major complaints were that their
parents tended to be overprotective. All of the participants had attended regular
schools and their school experiences were for the most part positive, especially during
the first school years when it was relatively easy for them to take part in activities
with the other children. During the teenage years, participation became more difficult
when their non-disabled peers expanded their horizons and started moving in areas
that were often not accessible for physically disabled people. Most of the participants
had friends among disabled as well as non-disabled peers but because many of their
friends lived in inaccessible houses it was important for the disabled children do be
able to invite friends to their homes.