Tensions have been highlighted, particularly in disability rights research and activism discourses, between the demands of the academy, the needs of vulnerable research participants as active contributors in research and between researchers themselves who are often caught in multiple dilemmas regarding these conflicting demands. This is particularly the case in research governance and practice terms when ‘top down’ pressures (e.g. from the academy, from funders) are often at odds with the need for a ‘bottom up’ approach to vulnerable research participants who often require adaptive, more inclusive and sometimes individualistic (case-by-case) qualitative methodological approaches. These issues are the focus of this article, which draws specifically on evidence from participatory studies with vulnerable groups and participatory photographic studies, in particular, to demonstrate the need for more collaborative and democratic approaches to research praxis.