Individuals with lived experience of disability should participate in every stage of research.

Abstract

Individuals with impairments involved in disability research have historically been treated as passive subjects; their ‘condition’ the only focus of interest for researchers. Such research remains almost invariably driven by professionals who have no lived experience of disability, but who evolve from a different framework of knowledge. They must constantly be aware of their own position of power within the research enterprise and take account of the relative vulnerability of those taking part in studies. There have been useful ethical developments to clarify assent and consent as a relational process in order to ensure meaningful involvement in research, even of children with complex communication needs.1 Methodological advances (e.g. integrating ethnographic approaches) have facilitated and enhanced inclusion of these children in research.2 In recent years, the individuals who are being studied have increasingly been described as ‘participants’. However, their participation is most often restricted to volunteering to a research project, personally or through a caregiver's consent. In the field of developmental disability, we have learned to value and optimize participation. In research, participation should mean much more than enrolment as members of study samples. At a minimum, it could imply that participants are given the opportunity to provide input. Paraphrasing hackneyed slogans, is clinical science ‘too important’ to be left to professionals? Rather, such research misses its crucial target if professionals do not take account of lived experience of what they are studying. Individuals with personal experience of disability, or lived experience as close relatives or caregivers, might function as stakeholders, advisors, consultants, helping to set research agendas, and in some situations as researchers themselves. DMCN’s author guidelines stress that individuals with lived experience of disability and their families should be included (as appropriate) in all stages of study development, in some instances as authors. We regularly invite them to review or write critical commentaries on related papers. This is done in order to protect against gaps and biases, promote innovation and development, and improve the quality of research by ensuring the most pertinent issues faced by disabled people are addressed appropriately. This resonates with the motto, ‘Nothing About Us Without Us’ (NAUWU), which has been adopted by disability rights advocates.3 The call originally referred to resistance to perceived societal oppression, and it can positively address empowerment in a wide array of areas, including research and scientific publishing.4 It may be unclear, however, who the ‘Us’ refers to. In other words, how well would affected persons thus participating be representative of all affected persons? Arguably, it might not be expected that these persons are representative when the focus is on exploring rather than representing multiple realities informed by individual experience. Of course, this might comply with neither the NAUWU principle nor the rigour of scientific endeavours. Also, how can we acknowledge the risk of cognitive and selection bias when anticipating overrepresentation of participants with lived experience with relatively high levels of literacy, and those who want and can be involved? This can be addressed to some extent when individuals with lived experience are organized within relevant, structured communities, assuming that such communities are the subjects of the research. They can then be integrally involved based on collective as much as personal experience. Unfortunately, the isolation of many disabled individuals that lies at the base of the NAUWU claim3 often results in effective exclusion even from such communities. We are currently working to address those issues constructively in dialogue with both individuals and groups with lived experience of developmental disability worldwide. This dialogue will always be guided by the spirit of diversity and inclusion which has been proposed to make complex social systems work better.5 Not required.