Kathy O’Grady, Sisters of Charity of Jesus & Mary Services, Mullingar

Participatory research—Theory to practice

The last Psychological Society of Ireland of the century Conference (held at the Rochestown Park Hotel in Cork, 11-14 November 1999) marked a first—people with learning disabilities presented the results of their own participatory research in Ireland. Part of the programme of the 30th conference included a symposium sponsored by the Learning Disability Group, chaired by Mark Quinn and convened by Deborah Higgins, both with the Daughters of Charity Services.

Christy Perry and Teresa Tuite of the Mullingar Resource Centre (MRC) presented the results of an extensive survey of attendees in their workplace. They were facilitated by Dr Colette Gallagher and Kathy O’Grady of the Sisters of Charity of Jesus and Mary Services, Mullingar

The survey, ‘It’s my life … It’s my workplace’, reflected concerns attendees had about their physical work environment. Questions dealt with hygiene in the bathrooms, level of noise, use of protective clothing, safety belts on provided transport, awareness of fire exits, smoking areas, etc. The content of the interview schedule reflected attendees’ concerns, and questions were structured with the facilitation of research psychologist Colette Gallagher.

How was it done? A panel of six attendees were invited to participate in the research. They were selected because of their good interpersonal skills and popularity with their peers. The theme of ‘health and safety in the workplace’ was agreed, and topics for inclusion with decided upon. The subject matter proved very relevant and practical; survey questions all related to concrete, unequivocal realities which could be answered in a straightforward manner. The six surveyors were instructed in implementing the survey, through practice sessions, role-play and piloting the instrument. Picture symbols were included on the questionnaire, to provide a memory aid for those with literacy challenges. Some of the interviewers memorised the instrument, finding that an easier option than struggling to read ‘the big words’.

Fifty-two of the 54 attendees at the MRC agreed to be, and were, interviewed. Results of the survey were collated with the assistance of the staff facilitators, and after some coaching, the researchers presented their findings first to the attendees of the MRC, and later to the PSI delegates and to Programme Manager Derry O’Dwyer and Breda Crehan-Roche (Disability Coordinator of the Midland Health Board).

It was very interesting to note that by the time about half of the 54 interviews had been completed, the work environment began to improve noticeably. Toilets were revamped, ceilings were treated to diminish industrial noise levels, safety clothing was used more consistently—and perhaps most importantly—changes in attitude were evident across the board, empowering all users of the building to think about safety and ownership.

The majority of attendees at the MRC reported that this participatory research survey was ‘the first time anyone ever asked me what I thought about the place!’ Those who participated found the experience enhancing—to their self-esteem and the realisation that what they say really can have a positive impact. (Isn’t that what we would all like?)

By including people with disabilities in participatory research, a voice can really be given to the voiceless—the ‘researched upon’ become the ‘researchers on’. Participatory research is an important first step in overcoming professionals/trainers’ learning disabilities—to see the potential of the group with whom they work, and in finding creative ways to meet their challenges.

  • It recognises the capacity of people to develop strategies for the solution of their own problems.
  • It involves participation in social investigation.
  • It is an educational process.
  • It involves consciousness raising.
  • It promotes the right to speak.
  • It involves knowledge generation.
  • It provides a basis for action.
  • It can facilitate empowerment.
  • It requires a different role for the researcher.

Research priorities have tended to be determined by the needs of professional organisations; thus, people with disabilities have often been excluded from the process of determining the flocus of the research.

Research has frequently ‘distorted’ the experience of disability, being predominantly based on a medical, rather than a social, model of disability.

Research has often been carried out ‘on’, rather than ‘with’ people with disabilities. The methods used have not facilitated their involvement.

Researchers have tended to be accountable to those who fund their research, or to professional groups, rather than to the people with disability about whom the research is carried out.

Research has often been irrelevant to the needs of people with disabilities or has failed to have a positive impact on their lives.