“Research is temporary, our experiences are forever”: rethinking ethics of care in participatory research with people with disabilities

Various scholars have discussed how ‘sensitive research’ or working with ‘vulnerable populations’ raises significant ethical considerations. While a feminist ethics of care can ensure a more respectful approach to scientific inquiry, it may also disempower participants through paternalistic research practices. Illustrated by actual research situations, we explore specific instances of practising care in our participatory research with people with disabilities in the Netherlands. By drawing on our personal reflections and those of the co-researchers with disabilities, we aim to contribute to rethinking ethics of care in participatory research and in working with people with disabilities or other ‘vulnerable populations’. We argue that similar research with both vulnerabilities and opportunities for enabling research practices requires care-full and slow methodologies. Within such slow research, a collective interdependence and responsibility can be attended to, surpassing solely procedural forms of research ethics and neoliberal logics.