The Arabic symbol dictionary research project is going to require a considerable amount of participation from all those taking part. Without the help and support of AAC uses and those expects and carers exploring the best way to help these individuals to communicate every day, this project will not succeed. Therefore at this juncture it is important to examine the various  ways of encouraging the types of participation that could support the way the team works with those who may be willing to help.

Members of the team working on this project have had experience of participatory research in the past and have published on the subject with a paper titled “Exploring the technology experiences of disabled learners in higher education: challenges for the use and development of participatory research methods” (download Word doc).  But as a way of introducing the subject on this blog it seemed to be easier to present a series of diagrams.

There have been several authors who have discussed the different ways of working in a participatory fashion and have highlighted some of the issues such as Zarb (2003) who writes

” Research cannot ever lead directly to the empowerment of disabled people (or any other group for that matter). As Mike Oliver points out, empowerment is not something that can be given, but something that people must take for them selves. The key issue – “is not how to empower people but, once people have decided to empower themselves, precisely what research can do to facilitate this process” (Oliver, 1992, p. 111)

As can be seen in the mindmap below and the outline notes there are many dilemmas in the quest to encourage a participatory approach to research with disabled individuals. 

Outline version

• Research done with people rather than on people (Reason & Heron 1986)
  • Equality in research relationships but not reject expert knowledge
    • Ensure research owned by participants as well as researchers (Cornwell &Jewkes 1995:1667)
      • Participants encouraged to own the outcome by setting the goals and sharing in decisions about processes (Everitt et al 1992:50)
    • Make traditional research more effective and meaningful
  • Essential to be aware of the issues involved
    • Need clarity of agreed aims and objectives as well as the roles of the researchers and participants. (Ward & Trigler 2001 Pg 58)
      • An overemphasis on getting the process right in terms of inclusion, can lead to mistakes being made in locating methods to answer the questions.” (Walmsley, 2004 Pg 32)
    • Discuss and be aware of how the research may affect participants.
    • Not the same as emancipatory research that is controlled by participants.
      • Walmsley  (2004) says it is widely accepted that, in contrast to emancipatory research, in participatory research, non-disabled people have an enduring role.”
    • Outcomes must be more than just reconstructed stories or mere validations of research undertaken (Duckett & Pratt , 2007)
    • Participation at the outset will help reduce incorrect labelling (disability/ability) or assumptions being made as to learner preferences.
    • Awareness of Funder’s requirements & Time constraints affecting degree of participation and possible outcomes
      • Chapell argues that “participatory research can be understood better as a pragmatic compromise between conflicting pressures on researchers. ..” this is when compared to emancipatory research as described by Zarb (1992)
• Semi-structured interviews

Degrees of Participation

As can be seen from the diagram below there are degrees of participant involvement and it was felt that for the symbol dictionary project, the only way forward would be if the team and researchers initiated ideas and shared their thoughts with participants.  Those participants using AAC Devices may not necessarily understand the linguistic elements of the project or be able to provide ideas if they have no knowledge of all the symbol systems on the market or the type of pictograms available in Arabic.  However, their support in making decisions about ideas presented will be essential, as will that all the experts and carers.  It would also be helpful to have the involvement of outside experts who could become critical friends as a way of seeking informal advice at times when concerns about particular issues arise.

 

So in an adaptation of Fajerman and Treseder’s diagram (2000), the chosen methodology involves the researcher initiating concepts but there are shared decisions with participants. So the “researcher has the initial idea but participants are involved in every step of the planning and implementation. Not only are their views considered  but participants are also involved in taking the decisions.” 

References

Chappell, A (2000) Emergence of participatory methodology in learning difficulty research: understanding the context. British Journal of Learning Disabilities, 28, 38-43

Cocks E. & Cockram J. (1995) The participatory research paradigm and intellectual disability. Mental Handicap Research, 8: 25–37.

Cornwall, A. & Jewkes, R. 1995, “What is Participatory Research?”, Social Science and Medicine, vol. 41, no. 12, pp. 1667-1676.

Duckett, P. & Pratt, R. 2007, “The emancipation of visually impaired people in social science research practice”, British Journal of Visual Impairment, 25, 1, 5-20.

Everitt, A., Hardiker, P., Littlewood, J. and Mullender, A. (1992) Applied Research for Better Practice, Macmillan, London.

Fajerman, L. and Treseder, P. (2000) Children are Service Users too, Save the Children Publications, 17 Grove Lane, London, SE5 8RD.

French, S. & Swain, J. 2004, “Researching Together: A Participatory Approach,” in Physiotherapy: A Psychosocial Approach, 3rd edn, S. French & J. Sim, Eds., Butterworth-Heinemann, Oxford.

Fischer, G., & Ostwald, J. (2002) “Seeding, Evolutionary Growth, and Reseeding: Enriching Participatory Design with Informed Participation, In Proceedings of the Participatory Design Conference (PDC’02), Malmö University, Sweden, pp. 135-143.

Newell, A., Carmichael, J. & Morgan, M (2007) Methodologies for involving older adults in the design process. In Proceedings of the 4th International Conference on Universal Access in HCI: http://www.springerlink.com/content/53t5026735v65721/fulltext.pdf

Radermacher, H. (2006) Participatory Action Research With People With Disabilities: Exploring Experiences Of Participation, Doctoral Thesis. Victoria University.

Richardson, M (2000) How we live: participatory research with six people with learning difficulties, Journal of Advanced Nursing 32, 6, 1383–1395.

Ward, K., & Trigler, J. S. (2001). Reflections on participatory action research with people who have developmental disabilities. Mental Retardation, 39, 57–59.

Zarb, G. (1992) On the Road to Damascus: First steps towards changing the relations of research production, Disability, Handicap and Society, 7, 2, 125 – 38.

Zarb G (2003) Running out of steam? The impact of research on disability policy and the disability rights agenda keynote paper presented at Disability Studies: Theory, Policy and Practice Conference Lancaster