Forgotten publics: considering disabled perspectives in responsible research and innovation

Abstract

Responsible Research and Innovation (RRI) in healthcare requires a more substantial engagement with disability theory and disabled stakeholders to counteract histories of disenfranchisement in scientific and technological innovation. Historically, disability has been configured as undesirable pathology in medicine, often assuming successes in innovation can be measured by crossing the constructed threshold between disabled and able. Employing a disability-informed perspective in RRI for healthcare innovations means dismantling passive patient roles in favor of active and meaningful engagement, contextualizing participation in histories of exclusion from public life, and creating physical, infrastructural, and social spaces that value and encourage disabled perspectives. Ultimately, this piece argues that recognizing disability as a crucial epistemic resource can aid in the production of more transparent, inclusive, and meaningful research and innovation.

Perceived barriers and facilitators to good end of life care: Focusing on people with intellectual disabilities

“…In ‘locating the self’ (Sword, 1999) throughout the research process, it was crucial to constantly recognise and challenge my own beliefs, focusing on learning not only from my participants but my co‐researchers as well. As a researcher who is committed to disability justice, I believe that disabled people know the most about the systems that oppress or exclude them (Berne et al, 2018) and that healthcare in particular must meaningfully include the perspectives of this marginalised population (Monteleone, 2020), especially people with intellectual disabilities (Snipstad, 2022). In addition, my funding required me to work alongside people with disabilities in my research, which is becoming increasingly common (Bigby et al, 2014).…”

Five questions on improving diversity, equity and inclusion in UK bioscience research or “How can UK bioscience be changed so that those from marginalised groups can thrive?”

“…The importance of an active disability-informed perceptive in R&I is now seen more positively. Indeed, engagement of marginalised communities in the design of research that is relevant to them is increasingly required by funders and publishers [ 84 , 85 ].…”

Trustworthy Autonomous Systems and Disabled Young People: A Critical Literature Review

“…While increasing diversity and engagement is central to Responsible Research and Innovation (RRI), the reality is that disabled young people are less likely to take a Science, Technology, Engineering or Medical (STEM) degree and those who do are more likely to be unemployed after graduation than their non-disabled counterparts (UK-RAS 2021). Disabled people are often only seen as passive recipients of autonomous technologies (Monteleone 2020) and research often considers the needs of disabled and older people as synonymous, proposing a single solution to cover all categories of need. By focusing on trustworthy autonomous systems (TAS), we consider key practical and ethical issues, particularly in relation to the lives and aspirations of disabled young people.…”