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SUMMARY:
This paper has two objectives. One is to reflect on research collaboration between Kristı´n a nondisabled doctoral student, and Aileen, a participant with learning disabilities, exploring the inclusiveness of the research and finding out how collaborative life histories can empower research practice and participants. The other one is to reflect on position as a researcher with learning disabilities and a nondisabled researcher in university in the field of disability study.
The research project was based on six young adults’ life histories with learning disabilities and they were active in social activities, for example, religion, arts and self-advocacy. The study started in 2004 and the data collection work was still continuing on the way. The research projects included 3 parts as inclusive research, collaborative life histories as well as the social field of disability studies.
In inclusive research part, the authors compared their collaboration work with Walmsley & Johnson’s criteria and 5 principles for inclusive research with people with learning disabilities, and limitations were observed in this inclusive research. Firstly, the research was initiated by nondisabled researchers and no one except six collaborators can own their life histories, but as a doctoral dissertation it would be owned by the student and to some extent her supervisor at the university. Secondly, only two of the six collaborators kept being interested and involved during the whole research process, others were lack of time or not interested in conferences or writing process parts. Thirdly, the principle said people with learning disabilities should have some control over the research process and outcomes. However, as it was a doctoral research project, restrictions existed that there were doctoral guidelines of the university to follow, and Aileen and other collaborators would not be coauthors of the doctoral dissertation. Fourthly, again the inclusiveness was limited to some extent due to doctoral guidelines and language. For example, Kristı´n’s supervisor decided the theoretical framework of this research project and all six collaborators were not included in this decision. 4 out of the 6 collaborators were not able to read English the language which is adopted in writing the doctoral dissertation and furthermore, collaborators may met with difficulties in understanding the academic language used in research community as well as the terminology and theory. The author finally considered that for a doctoral research project, it could most likely never be fully inclusive.
In collaborative life histories part, the author listed references to claim that people with learning disabilities hoped that by telling their stories about how they were treated in the past, the same situation may be prevented from happening again to others with learning disabilities. And Aileen believed that people with learning disabilities should made opinions heard and emphasized in public, speak loudly and fight for equal rights, otherwise they could hardly enjoy the same rights as other ordinary people. On the other hand, the six life histories may not be representative of all collaborative life history research and by adding more stories and collecting more data the inclusive learning disability research would be more comprehensive and objective.
In the social field of disability studies part, the authors argued that as researches they had litter power in social field of disability studies. It was common sense that people with learning disabilities may not be strong and powerful enough to possess capital in disability study field because they were underrepresented in most aspects of disability study field. For example research positions in institutions and universities were mostly held by nondisabled people and most publications on researches of learning disabilities were written by researchers who were not disabled. Furthermore, due to limited educational opportunities and lack of chances to get involved in researches, people with learning disabilities met with social exclusion inevitably.
The research concluded that inclusive research, collaborative life histories as well as collaborative writing were valuable in research of learning disabilities and more attention should be paid by academia and policy makers. People with learning disabilities should be aware that it could be of great importance for them to tell their own stories and hold their own opinions during research process, their stories and claims would help other people with learning disabilities to gain more respect and seek for equal rights.
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