Uppeldi og menntun - 01.07.2014, Page 92

Uppeldi og menntUn/icelandic JoUrnal of edUcation 23(2) 201492
Behind the qUest for tales, stories and liVes
camera, Gunnar took on an active oppositional position in our research collaboration.
He did not take on the role of the passive research subject and challenged the label of
intellectual disabilities as an absolute medical condition.
I brought with me to this research assumptions about Gunnar’s abilities and I based
these assumptions on the deficit or medical model of disability and as such looked for
deficits in his performance. My attention was, in the process, diverted from his abili-
ties and the true story of his life. I followed in the footsteps of those researchers who
have, over the past couple of decades, been criticised by disabled people and disa-
bility study scholars alike for misrepresenting disabled people’s lives and upholding
negative and medical views on disability and impairment. The unexpected nature of
this story relies on a researcher’s deficit view of the person s/he is working with. This
raises questions about attempts to promote, for example, inclusive research to coun-
teract researchers assuming in/abilities and lack of capacity on the part of narrators.
Before spending time with Gunnar and learning his story and background, I would
not have been able to recognise his resistance or hear his unexpected and oppositional
stories of achievement and abilities.
The expected story
Disability, just like parenthood and gender, is a socially constructed phenomenon that
is located within and derives its meaning from specific cultural and temporal contexts.
How disability is defined affects people’s communications and expectations; similar-
ly, stereotypes and labels affect how disabled people are perceived and treated.
This is the story about how I (Hanna), like others, was influenced by cultural im-
ages of both parenthood and people with intellectual disabilities. The dominant dis-
course obstructed my view and without realizing it I became a victim of my own
prejudices. It was in 1994 when, as an undergraduate student, I was conducting my
first qualitative study. This project was about the life and situation of Stella, a woman
my age with intellectual disabilities who had travelled all over the world both as an
athlete and as a self-advocate that gave talks on disability rights issues. I wanted to
understand how she felt playing these two different roles as a devalued person with
intellectual disabilities on the one hand and on the other as a highly valued athlete
by international standards, as well as a disabled activist. I was primarily interested
in her leadership as an self-advocate and athlete but when she told me her life story
I learnt that she had recently been forced by her family to undergo an abortion and
was still wounded emotionally as a result of that experience. I listened to her telling
me this without ‘hearing’ or realizing what she was actually saying. With my focus on
the research topic and the ‘story’ I expected to hear, I kept asking her questions about
her different roles in life. It was not until the next day when I was transcribing the
interview that I heard and understood what she had been telling me. I felt ashamed
but also surprised that I had missed this in the interview situation itself. Furthermore,
I was taken aback because until then it had never occurred to me that women with
intellectual disabilities might want to become pregnant, be mothers or even have sex.
I also did not know that mothers with intellectual disabilities even existed.