Inclusive and participatory research: who holds authority

Participation is the module's most repeated promise and its least examined word. A project that interviews disabled users, runs a workshop, or seats them on an advisory board can call itself participatory, and each arrangement distributes authority differently. The question here is not whether disabled people appear in research but who decides what it is for.

This ninth of ten units argues that participation is a transfer of authority from the researcher to the participant. Most of the field's participation is evaluative rather than authoritative. The evidence is internal: the field's own reviews record participants entering late, in narrow roles, on terms the researcher sets. Where authority is not transferred, participatory methods can legitimate a decision already taken.

Authority, not presence, is what participation transfers

Arnstein (1969) supplied the scale the field still reasons with. Her ladder ranks arrangements by the power they give the people affected, from manipulation and therapy at the bottom, through informing, consultation and placation, to partnership, delegated power and citizen control at the top. Showing users a finished prototype is consultation, while letting them set the problem and reject the design is near the top.

Writers named the transfer of authority as the point of disability research before it became a design concern. Oliver (1992) argued that research on disability had made little contribution to improving disabled people's lives. The social relations of research production gave control to the researcher. He proposed an emancipatory paradigm in which disabled people set the agenda. The claim is structural: changing the interview method does not change who owns the question.

Stone and Priestley (1996) worked the problem from the non-disabled researcher's position. They found contradictions that forced a balance between political action and academic rigour.

Charlton (1998) supplied the slogan and the political frame, drawing on interviews with activists over a decade. He argued that disability oppression is rooted in dependency and powerlessness, and that control over the research and services that concern disabled people is part of liberation. Nothing about us without us moved from a demand about representation to a principle about authority.

The field's own reviews record a gap

The reviews measure practice against that standard, and practice falls short. Benton and Johnson (2015) reviewed the design methods used to involve children with special educational needs and disabilities. They classified the roles, responsibilities and activities of the children and the adults, and the outcomes of the involvement for the technology and for the children themselves.

Borjesson and colleagues (2015) reached a sharper result in a systematic review of design work with developmentally diverse children. Children with high-functioning autism aged 8 to 12 were the group most often actively involved. Other groups more often took a passive role, and they were observed across the requirements, design and evaluation phases. That is what the lower rungs of the ladder predict: presence without authority.

Barnes (2003), writing from inside the emancipatory movement a decade after Oliver, traced emancipatory disability research in the United Kingdom since 1992. He concluded that progress had been considerable but that the approach's future remained precarious. Walmsley (2001) added the degrees of involvement. She showed that inclusive researchers often adopted the role of advocate for people with learning difficulties rather than handing them control. Inclusion and authority are not the same claim.

Co-design supplied the vocabulary before it supplied a test

The design literature reached the same territory by another route. Sanders and Stappers (2008) described the shift from user-centred design to co-design. In co-design, users become partners, and the roles of designer, researcher and the person formerly known as the user are renegotiated. Cifter and colleagues (2022) gave the vocabulary a method. Universities in the United Kingdom and Turkey built the SIDe model together, using normative inquiry so that every partner held an equal voice. They tested it with students from four disciplines at Mimar Sinan Fine Arts University. The output is a shared process model rather than a tool, which shows what equal voice looks like when it is written down.

Hendriks and colleagues (2015) found that many established co-design methods were not appropriate for people living with cognitive or sensory impairments and required adjustment.

That leaves participatory claims hard to evaluate, and the field has said so. Frauenberger and colleagues (2015) argued that participatory design needed its own account of rigour and accountability and proposed a framework rooted in debate, critique and reflection. That is what turns participation from a description of a process into a claim that can be tested.

Participation works with conflict, and empathy can replace it

Two positions inside the tradition disagree about what participation should produce. Bjorgvinsson and colleagues (2012) described agonistic participatory design, developed through the Malmo Living Labs with marginalised social movements. In that approach designers work with disagreement rather than seeking consensus. Frauenberger, Good and Keay-Bright (2011) described the ECHOES project, in which typically developing children and children with autism spectrum conditions shaped a technology for social skills, and the same transfer is owed to people in later life.

The clearest warning about false participation comes from outside disability research proper. Bennett and Rosner (2019) analysed the empathy activities designers use to understand people with disabilities. They argued that building empathy can distance disabled people from the process designers intend to draw them into. A designer's imagined experience is not a substitute for the authority of the person whose experience it is.

Contested question: does participation transfer authority or manufacture consent?

The literature agrees that participation should mean more than consultation and disagrees about whether it does. One position holds that participation is a transfer of power already under way. Arnstein (1969) supplies the scale, Oliver (1992) and Charlton (1998) ground it in the social relations of research, and Bjorgvinsson and colleagues (2012) show it working where users hold real disagreement. Frauenberger, Good and Keay-Bright (2011) give a case in which children shaped the artefact.

A second holds that participation is usually evaluative, and the reviews point that way. Borjesson and colleagues (2015) record involvement broad in role but thin in authority, Benton and Johnson (2015) map the roles the children and adults held, and Barnes (2003) reports uneven progress from inside the movement. A third locates the problem in method, because Hendriks and colleagues (2015) argue that established methods must be adapted to each situation and Frauenberger and colleagues (2015) that participatory design needs an accountable language. A fourth, from Bennett and Rosner (2019), holds that some participation manufactures consent.

The two sides rest on evidence of different kinds. The transfer case rests on a theoretical scale and on two historical accounts of a research movement, which describe an argument rather than a project outcome. The shortfall case rests on two systematic reviews that coded the roles participants held across many projects, and that coding is the unit's only measurement of practice. The consent case rests on one analysis of the empathy activities designers use.

The strongest objection is that the unit's own measure may record documents rather than power. Borjesson and colleagues coded published accounts, so a project that transferred authority without writing it down would be coded as a passive role. The reviews that the unit treats as its baseline evidence can therefore be biased towards the conclusion the unit draws from them.

What would settle it is a comparison of projects on who set the research question, who held a veto over the design, and who controlled the findings. Those variables would be recorded over the life of each project rather than at one workshop. Benton and Johnson (2015) supply the variables and Frauenberger and colleagues (2015) supply the standard of accountability.

What to do while the dispute is open

While the dispute is open, record who set the question, who held a veto and who owns the findings. Write those three into the project record before the first workshop rather than after the last, and record who joined on a shared device or a slow connection.

Where the argument is heading

The first push is towards accountability. Frauenberger and colleagues (2015) gave participatory design a language for judging its own choices. The reviews by Benton and Johnson (2015) and Borjesson and colleagues (2015) gave it the baseline it will be measured against. The second is towards conflict as a legitimate method, which Bjorgvinsson and colleagues (2012) established. The third is the correction of empathy: Bennett and Rosner (2019) showed that feeling for a user is not ceding authority to one. The next contribution will be a way of measuring who held power in a project. The next unit turns to the law and procurement that decide what access is obliged to deliver.

The sources this unit rests on

• Arnstein, S. R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners. doi:10.4324/9780429261732-36 Set out a ladder ranking arrangements by the power they give citizens, from manipulation and therapy through consultation to partnership, delegated power and citizen control. The plan's identifier points to a later reprint, not the original journal issue.
• Oliver, M. (1992). Changing the social relations of research production? Disability, Handicap & Society. doi:10.1080/02674649266780141 Argued that research on disability had made little contribution to improving disabled people's lives because the social relations of research production gave control to the researcher, and proposed an emancipatory paradigm in which disabled people set the agenda. The claim is structural, so authority sits in the research relationship.
• Stone, E. and Priestley, M. (1996). Parasites, pawns and partners: disability research and the role of non-disabled researchers. The British Journal of Sociology. doi:10.2307/591081 Set out six principles of emancipatory research and examined the authors' own projects against them, finding contradictions between political action and academic rigour. It is a candid account of what a non-disabled researcher can legitimately claim.
• Charlton, J. I. (1998). Nothing About Us Without Us: Disability Oppression and Empowerment. Berkeley: University of California Press. doi:10.1525/california/9780520207950.001.0001 Argued, from interviews with activists over a decade, that disability oppression is rooted in dependency and powerlessness and that control over research and services is part of liberation. Nothing about us without us becomes a principle about authority.
• Walmsley, J. (2001). Normalisation, emancipatory research and inclusive research in learning disability. Disability & Society. doi:10.1080/09687590120035807 Traced normalisation and the social model in learning disability research and showed that inclusive researchers often took the role of advocate rather than handing control to people with learning difficulties, while emancipatory researchers tried to put them in charge. It separates inclusion from authority.
• Barnes, C. (2003). What a difference a decade makes: reflections on doing emancipatory disability research. Disability & Society. doi:10.1080/713662197 Reflected on a decade of emancipatory disability research in the United Kingdom since 1992 and concluded that progress had been considerable but that the approach remained precarious. Coming from an advocate, the admission supports the unit's claim.
• Sanders, E. B. N. and Stappers, P. J. (2008). Co-creation and the new landscapes of design. CoDesign. doi:10.1080/15710880701875068 Described the shift from user-centred design to co-designing with users, in which the roles of designer, researcher and the person formerly known as the user are renegotiated. The co-creation vocabulary entered design before the disability literature tested it.
• Frauenberger, C., Good, J. and Keay-Bright, W. (2011). Designing technology for children with special needs: bridging perspectives through participatory design. CoDesign. doi:10.1080/15710882.2011.587013 Described co-creation in the ECHOES project, where typically developing children and children with autism spectrum conditions shaped a technology for social skills. Children's perspectives shaped the design rather than merely approving it.
• Bjorgvinsson, E., Ehn, P. and Hillgren, P. A. (2012). Agonistic participatory design: working with marginalised social movements. CoDesign. doi:10.1080/15710882.2012.672577 Developed agonistic participatory design through the Malmo Living Labs, working with marginalised social movements, and argued that participation should engage conflict rather than seek consensus. It reframes participation as political work.
• Benton, L. and Johnson, H. (2015). Widening participation in technology design: a review of the involvement of children with special educational needs and disabilities. International Journal of Child-Computer Interaction. doi:10.1016/j.ijcci.2015.07.001 Reviewed the methods used to involve children with special educational needs and disabilities in technology design, classifying the roles, responsibilities and activities of the children and adults and the outcomes of the involvement for the technology and for the children themselves.
• Borjesson, P., Eriksson, S., Drageset, O., et al. (2015). Designing technology for and with developmentally diverse children: a systematic literature review. Proceedings of the 14th International Conference on Interaction Design and Children. doi:10.1145/2771839.2771848 Found a growing tendency to include developmentally diverse children in design, with children with high-functioning autism aged 8 to 12 most often actively involved while other groups more often took a passive, observational role. It is the unit's clearest evidence of presence without authority.
• Frauenberger, C., Good, J., Fitzpatrick, G. and Iversen, O. S. (2015). In pursuit of rigour and accountability in participatory design. International Journal of Human-Computer Studies. doi:10.1016/j.ijhcs.2014.09.004 Argued that participatory design had diversified without a shared account of rigour and accountability, and proposed interpretations of both rooted in debate, critique and reflection. It gives the unit a language for treating a participatory claim as something testable.
• Hendriks, N., Slegers, K. and Duysburgh, P. (2015). Codesign with people living with cognitive or sensory impairments: a case for method stories and uniqueness. CoDesign. doi:10.1080/15710882.2015.1020316 Found that many established co-design methods were not appropriate for people living with cognitive or sensory impairments and required adjustment. The authors moved from general principles to method stories and uniqueness; the plan's shorter title for the paper is not the published one.
• Cifter, A. S., Dong, H., Cook, S. and Ayna, A. (2022). Using normative inquiry and co-design to embed inclusive design in social design education. The Design Journal. doi:10.1080/14606925.2022.2152986 Reports the SIDe project, a United Kingdom and Turkey collaboration that built a shared model of inclusive and co-design in social design education through normative inquiry and an equal voice among partners. It shows a transfer of authority written into a process model.
• Bennett, C. L. and Rosner, D. K. (2019). The promise of empathy: design, disability, and knowing the other. Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. doi:10.1145/3290605.3300528 Analysed the empathy activities designers use to understand people with disabilities and argued that building empathy can distance disabled people from the process designers intend to draw them into. It is the unit's sharpest case that feeling for a user is not granting authority.