Uppeldi og menntun - 01.07.2015, Qupperneq 110

UPPELDI OG MENNTUN/ICELANDIC JOURNAL OF EDUCATION 24(2) 2015110
SOCIAL ( IN )EQUALITY: COLLABORATIVE REFLECTION
Although we are skeptical when it comes to segregated activities for disabled
people we do not deny the importance of the collective. On the contrary, we believe
self-advocacy to be essential to the quest for social change and disability rights. There
are many different ways for self-advocates to fight for equality, for example by writing
letters to politicians, by participating in research projects, and by lecturing at confer-
ences and educational institutions. This type of self-advocacy often takes place in the
public space and by advocating for equality self-advocates contribute to knowledge
that can influence the public and consequently be used for policy and social change.
Nevertheless, people with intellectual disabilities in Iceland have been left out of the
larger political and public debate on disability (Björnsdóttir & Jóhannesson, 2009).
Þroskahjálp, the National Association of Intellectual Disabilities (NAID) does not
belong to the larger Organization of Disabled People (ÖBÍ) which has the purpose of
representing disabled people and safeguarding their interests in the context of legis-
lation and welfare. The only formal self-advocacy group for people with intellectual
disabilities in Iceland is a sub-organization of the NAID, and people with intellectual
disabilities are marginalized within the disability movement, which, for example,
becomes visible at national and international disability conferences. This was particu-
larly obvious at the 13th Nordic Network on Disability Research Conference in Bergen
in May 2015. Even though numerous researchers were presenting data from inclusive
research, none included their partners with intellectual disabilities. We, Steindór and
Kristín, had planned to present a paper at this conference and applied for funding
which was easy for Kristín through the university and her union. Steindór, on the oth-
er hand, failed to obtain funding. Kristín ended up presenting our collaborative work
to a room full of non-disabled researchers.
Limited access to political participation is among the indicators for social exclusion.
Levitas (2006) argues that non-participation in, for example, voting is closely linked
to poverty or lack of resources. We have previously argued that voting is the ultimate
manifestation that one belongs to and participates in society (Björnsdóttir, 2009). Some
might argue that it is persons’ right rather than their need to vote and therefore not a
matter of welfare. We disagree and argue that for many people, especially those exper-
iencing deprivations, it is a matter of need or, as Steindór puts it: ‘You should vote for
social change.’ Ágústsdóttir (2015) has criticized the historical silence regarding the
right of disabled people to vote which was secured with legislation in 1934. However,
it was not until 2012 that the act concerning parliamentary elections to the Althing was
amended so that disabled voters could choose who would provide assistance in the
balloting booth, when needed (Act Concerning Parliamentary Elections to the Althing
No. 24/2000). Previously, the election officials would themselves provide this assist-
ance because it was feared that disabled people might be exploited by their parents or
personal assistants who would be in an ultimate position to steal their votes.
Sen (1992, 2000, 2001) is concerned with persons’ interests more than their actions
or behaviors so when we are asking what participation is relevant to social inclusion
we need to focus on the persons’ freedom to choose from real and practical opportu-
nities. The freedom to choose is therefore essential to Sen’s (2001) understanding of
social inclusion. Although the rights of people with intellectual disabilities have been