The project described by Volker Schönwiese is financed within the framework of the research programme TRAFO (TRansdisziplinäre FOrschung = transdisciplinary research) that launched by the Federal Ministry for Education, Science and Culture in Austria. In the context of this programme "transdiciplinary" means that academic research connects and cooperates with holders of non-academic knowledge. Therefor projects have to be based on a research approach that is problem oriented and participatory. The programme aims at pratically and concretely trying out and realizing participatory methods in the field of the humanities and thus to develop adequate theories and analytical instruments for the solution of a distinct problem. In Austria, there´s no tradition or experience with praticipatory methods in the field of research on people with disablities. So the project on the painting of a disabled man not only offers the opportunity to realize a participatory research project but also to stimulate a broader discussion on the possibility and necessity of participatory disability research within the scientific community of the German speaking countries.

As the key issue is the cultural representation of disability we developed a research design that intended to emphasize and to strenghten the view of women and men with disabilities. The establishment of a so called reference group connects the academic research project with a grass root initiative as it´s described characteristic for participatory research (comp. Reason/Bradbury 2001). In English literature on participatory research reference groups are mentioned as a common method that´s proven successful despite all difficulties. Reference groups involve representatives of the people being studied or who are intended beneficiaries of the research (comp. Turnbull, Friesen 1995). Their role ist to accompany and to shape the whole research process. There are different terms and descriptions of reference groups. Turnbull and Friesen report on PAR ^[1] committes for research projects on families with disabled children. "The PAR committee advises assertively, candidly and comprehensively on all aspects of research - its initial planning, implementation, interpretation and utilization," (Turnbull, Friesen 1995, p. 3). Heron and Reason (2001) describe "inquiry groups" where a close cooperation between the researchers and those concerned with a research question takes place. Inquiry groups not only shape the research process but also make contributions in content. Finally, Walmsely and Johnson mention "advisory or reference groups" as one of the first modells, that made possible the participation of women and men with learning disabilities in research projects. "One of the earliest ways in which people with learning disabilities were engaged in major research projects was as advisory or reference groups." (Walmsley/Johnson, 2003, S. 146). As far as I am familiar with English literature on participatory research it seems to me that most projects using participatory approaches either deal with autobiographical issues or with issues related to social services for people with disabilities. It doesn´t seem common that research in the field of the humanities with a historical content and a theoretical aim is conceptualised in a participatory way.

People with disabilities who either work for the Independent Living Center^[2] in Innsbruck or who are otherwise close to it constitute a reference group for the project "The Painting of a disabled Man". The contemporary perspective and view of women and men with disabilities plays a key role in the project as it they are supposed to influence the research content as well as the presentation of the research results in the public. Furthermore, there´s the longterm aim to establish participation in research on disability. Apart from the tendency that it has gradually become common to give people with disabilities or parents of disabled children the role as respondents in social research, the issue of participatory research hasn´t even been considered or discussed in Austria so far, neither in research nor within the Independent Living Community. So the project presented offers the opportunity to support the establishment of a group that observs or comments relevant research activities at the University of Innsbruck beyond the end of our current project. This is a strategy recommended for Independent Living centers. "It may be useful for each ILRC^[3] to form a committee to oversee research activities such as reviewing proposals, monitoring research, and dealing with issues that may arise through the research process." (CAILC 1994, S. 6)

The reference group consists of four women and four men with disabilities. They´re supposed to meet about every six to eight weeks during the whole research process. One meeting is scheduled for two to three hours. The hourly rate for attending a reference group meeting is € 18.-. The meetings are planned, prepared and chaired by the team of researchers. Two of the researchers have a disability, too. Academics with disabilities have played a key role in the development and establishment of Disability Studies as well as participatory approaches in the field of disability research. They have a role as mediators between the researchers and the people concerned. "People who have membership in multiple constituencies, such as researchers who have disabilities, will play critical roles in this collaboration." (Doe, Whyte 1995, p. 12.)

At the beginning of the project two issues are predominant: on the one hand the role of the reference group resp. the cooperation between the reference group and the research team need to be clarified and worked out in detail, on the other hand the provisional draft of the project needs to be presented. The reference group needs to be introduced to the painting of the disabled man as well as to its historical background. This is the first opportunity for the members of the reference group to make comments or to suggest changes to the research process. For the project itself, such moments are crucial. They will show if real participation in terms of influencing and shaping the research is possible or if the reference group is tocenistic. During the project as well as at the end of it the reference group will have to reflect and decide on these issues. Discussions and negotiations between the members of the reference group and the researchers will have to influence the content and process of the project in a way that gives both perspecitves an expression. For the researchers this means that they have to leave their exclusive position as knowers and to honestly get involved with the perspective of the men and women with disabilities. Heron and Reason describe such a way in which participatory action makes possible a coopertative relationship between researchers and people concerned: "So in traditional research on People, the roles of researcher and subject are mutually exclusive: the researcher only contributes the thinking that goes into the project, and the subjects only contribute the action to be studied. In co-operative inquiry these exclusive roles are replaced by a co-operative relationship, so that all those involved work together as co-researchers and as co-subjects. Everyone is involved in the design and management of the inquiry, everyone gets into the experience and action that is being explored; everyone is involved in making sense and drawing conclusions; thus everyone involved can take initiative and exert influence on the process." (Heron, Reason 2001, S. 179)

In the further course of the project the debates will first focus on the discussion and interpretation of the continually produced results resp. data and will then deal with the question how results can be presented to differend target groups. It´s also conceivable that members of the referencegroup contribute to the final publication resp. to the exhibition at the Ambras castle. Apart from this concrete realisaton of a participatory research project the critical reflexion of the referencegroup as a method for participation is a main aim of the project. The researchers as well as the members of the referencegroup are supposed to comment on and discuss their perception and view of the research process.

The project started in March 2005 and in regard to the reference group the following can be reported for the time being. The first step was to choose and to find men and women who were interested to participate as members of the reference group. As Volker Schoenwiese, Ulrike Pfeifenberger and I have a close relationship with the Independent Living Center in Innsbruck it was not difficult to get in touch with possible participants. Criteria that influenced our decision to ask a person for participation were: a balance between men and women, a balance between academics and non-academics, an interest in art or own activity as an artist and an interest in theoretical issues on disability. Out of nine people invited just one man decided not to participate due to the lack of time. The members of the reference group are: Heinz Brantmaier, Mag. Patrizia Egger, Mag. Karin Flatz, Christine Riegler, DSA David Sporschill, Mag. Harald Strauber, Georg Urban, DSA Erika Zwicklhuber. These people first met with Ulrike Pfeifenberger and me as the researcher who in the project are responsible for the referencegroup. Besides from getting to know each other and giving the group the chance to constitute we intended to present the proposal for the research project. It soon turned out that for my colleague and me all the detailed and specific questions the members of the referencegroup asked in regard to history, art-history and disability theory were much too much. E.g. questions were: what was the context of the production of the painting? what was its purpose? what meaning did the body have at that time? what does all this have to do with today? what are artists aiming at when they paint people with disabilities? The other central issue that showed up instantly was the question of the role of the reference group resp. the role of the individual participant. Patrizia Egger criticized the fact that just men and women with disabilities formed the reference group. Wasn´t this another way of making objects of disabled people in research? This comment resp. question profoundly dominated the further discussion during the first meeting.

Two weeks later, the reference group first met the two researchers responsible for art history and disability as well as the project manager. After a detailed presentation with power point illustration on the historical background of the Chamber of Arts at the Ambras Castle first results of the historical research were presented to the reference group. Though many questions were asked the whole situation still very much resembled a lecture dominated by the researcher. This situation will hopefully change as soons as the members of the referencegroup will become more familiar with the issue and the details of the research project. At the end of this meeting, too, we discussed the role of the reference group in detail and profoundly. Patrizia Egger repeated her critique adding one key detail that regarding the written proposal of the resarch project. In the proposal, reseachers showed up with their names and qualification whereas the referencegroup was just described as consisting of women and men with disabilities and thus reducing these people to their disability. So the main issue we´ve been dealing with in regard to the establishment of the reference group is if it was the right decission to choose only men and women with disabilities. Possibly and hopefully at the end of the project we will be able to answer this and other questions in regard to reference groups as a method for participatiory research in the field of humanities.

CAICL (Canadian Association of Independent Living Centers). Choice, Flexibility and Control in Community Research. A Guidebook. Ottawa, Ontario: Canadian Association of Independent Living Centers, 1994.

Doe, Tanis/ Whyte, John. Participatory Action Research. Paper presented at the National Institute on Disability Research Conference "Forging Collaborative Partnerships in the Study of Disability" in Washington, D.C., 1995.

Heron, John / Reason, Peter: The Practice of Co-operative Inquiry: Research "with" rather than "on" People. in: Reason, Peter/ Bradbury, Hilary (Ed.) (loc. cit.), p. 179 - 188.

Reason, Peter/ Bradbury, Hilary (Ed.): Handbook of Action Research. Participative Inquiry and Practice. Sage Publications Ltd, 2001.

Turnbull, Ann/ Friesen, Barbara. Forging Collaborative Partnerships with Families in the Study of Disability. Paper presented at the National Institute on Disability Research Conference "Forging Collaborative Partnerships in the Study of Disability" in Washington, D.C., 1995.

Walmsley, Jan/ Johnson, Kelly: Inclusive Research with People with Learning Disabilities, Past, Present an Future. London/ New York: Jessica Kingsley, 2003.

Petra Flieger

free lancing social scientist,

affiliated to the University of Innsbruck for this project

(contact: petra.flieger@utanet.at)

Quelle:

Petra Flieger: The participatory approach of the research project "Painting of a disabled Man."

This is a current project of the Department of Education at the University of Innsbruck. Paper presented at the 8th research conference of the NNDR in Oslo, 14th - 16th April 2005.

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Stand: 05.08.2010