Uppeldi og menntun - 01.07.2015, Qupperneq 111

UPPELDI OG MENNTUN/ICELANDIC JOURNAL OF EDUCATION 24(2) 2015 111
KRISTÍN BJÖRNSDÓTTIR & STEINDÓR JÓNSSON
secured in many areas, there seems to be a discrepancy between rights and reality for
many people which restricts their opportunities to achieve a basic level of well-being.
They have the formal right to choose how to participate in society but are not provided
with practical opportunities to do so. Furthermore, it is important not to mistake un-
favorable inclusion in segregated activities for active participation in the shared social
experience.
QUALITY OF LIFE
Different professions use different measurements for quality of life, but many of these
instruments are based on physical and mental health and well-being which could be
unfavorable to disabled people. These instruments have been criticized for being lim-
ited and not able to depict the range of individual experiences (Carr & Higginson,
2001). Quality of life is also one of the concepts Sen (2001) uses in his theory; he argues
that social exclusion can affect people’s quality of life, which is commonly measured
at three domains: health and well-being, living environment, and crime, harm and
criminalization.
For the purpose of this article, we did not use any quantitative quality of life instru-
ments or measure the quality of life of people with intellectual disabilities in Iceland.
We decided to respond to the invitation of the World Health Organization (2011) to
take on a qualitative research which describes the lived experience of disability which
can be coupled with measurements of the well-being and quality of life of people
with disabilities. Since Steindór has been labeled as having intellectual disabilities
we decided to rely on his understanding of quality of life of people with intellectual
disabilities.
Kristín: We need to provide the readers with our understanding of the quality of life
concept.
Steindór: First of all it has to do with living standards.
Kristín: What do you mean?
Steindór: Having enough to survive [pause] with some dignity.
Kristín: But is it not about something more than just having enough to eat and a place
to sleep?
Steindór: Well having some sense of security you know. Feeling that you are safe.
Kristín: Financial security?
Steindór: Not just that. Also being physically safe.
Kristín: Yes, I agree that is important.
Steindór: Yes, and also being accepted.
Social exclusion in the form of inability to participate in society because of lack of
or denial of resources and services affects a person’s quality of life (Levitas et al.,
2007). For Steindór quality of life is not simply about economic participation but also
about security and acceptance. The public discourse on disability, especially online
discourse, is shaped by the deficit understanding whose primary focus is on limi-
tation and disabled people as a social burden (Björnsdóttir & Sigurjónsdóttir, 2013).