As a team of researchers from advocacy-based organisations, universities and clinical settings, we are committed to disseminating our findings to:

• people with learning disabilities, self-advocacy groups and their supporters and families;

• healthcare practitioners, service providers and policy makers;

• social science, humanities and clinical researchers

We use different formats including online presentations, Easy Read publications, illustrations, podcasts and journal articles.

The Humanising Healthcare team have presented findings from the project to a number of inter/national and multi/discplinary audiences. You can find a link to the powerpoint slides for many of these presentations on our News Page. and we have provided an up to date list to the left. If you require any further information about these presentations pease email d.goodley@sheffield.ac.uk 

Disability Dialogues: a series of short provocative pieces about disability studies and research and a joint venture of iHuman, University of Sheffield; Centre for Disability Studies, University of Leeds; Disability Innovation Institute, UNSW and NIE/NTU Singapore. Some of our team have written peices for Disability Dialogues as part of a wider commitment to ensuring the politics of self-advocacy and people with learning disabilities are a key part of critical disability studies scholarship

Dan Goodley, Katherine Runswick-Cole, Nikita Hayden, Bojana Daw Srdanovic, Rebecca Lawthom. (in press) From pathology to Affirmation: Disability Philosophy in Everyday Life. HUMANA.MENTE Journal of Philosophical Studies

This paper argues for an affirmative disability philosophy and research methodology. Even after four decades of critical disability studies, much of what we encounter in public spaces - in relation to disability - on a day to day basis remain untouched by this critical scholarship. With reference to composite narratives from two research projects and our own personal entanglements we consider dominant ways in which everyday philosophies of disability threaten to pathologise people with learning disabilities as objects and counter these by offering an alternative affirmative philosophy. We explore disability as affirmation; humane, unbounded, potential. This way of knowing disability should be a regular feature of common parlance and philosophical discourse and requires being informed by disabled people and critical disability studies scholarship. We explore the ways in which inserting disability-as-affirmation into everyday conversations and public life can have significant wider societal impacts through offering a more expansive philosophy of disability.

Bojana Daw Srdanovic (2025). Allyship in Healthcare for People With Learning Disabilities as a Praxis of Respect, Attention and Collaborative Action.
Sociology of Health and Illness
Gold Open Access

There is a dearth of literature focusing on how allyship in health may be enacted in relation to people with learning disabilities (LD). This is concerning, because people with LD are vulnerable to health inequalities and forms of medical dehumanisation including do-not-resuscitate orders, diagnostic overshadowing and overprescription of psychotropic drugs. Deploying critical disability studies as a lens through which to understand disability, this paper reviews models of disability allyship developed in healthcare, research and theatre. In doing so it advocates transformative allyship as a model that can both animate action in support of people with learning disabilities and accommodate the involvement of others, including clinicians, carers and relatives, without compromising the all-important commitment to supporting disability cultures. The paper presents and analyses ethnographic data gained through observations of eleven healthcare appointments between seven clinicians and five patients with LD, undertaken as part of the ESRC-funded study Humanising Healthcare. It documents the potential of transformative allyship in healthcare to transform harmful disablist practices through emphasising respect, attention and collaborative action while also noting that broader structural conditions and diagnostic technologies limit the extent to which clinicians can enact transformative allyship.

It has been argued that the university needs depathologising, a radical rethink and reorientation of the university’s relationship with disability. This paper offers an original affirmative proposition: that the university is already depathologising. Inspired by disabled people’s activism and scholarship, we explore the ways in which academics, researchers and research professional colleagues are depathologising the disablist and ableist university. We reflect on our practices as principal investigators and research leaders of three funded research projects using novel composite conversations (a unique methodological form of experimental writing) and explore (i) pushing back at university bureaucracy towards co-production; (ii) critically appropriating the performative university and (iii) enabling access as colleagues. Depathologisation invites us to pause, to meditate and to significantly reimagine the university. And those of us who work in the university are the university, and we all have work to do.

Goodley, D. (2024). Disability Studies: An interdisciplinary introduction. London: Sage. 

This third edition of a disability studies textbook makes direct reference to the humanising healthcare project in order to unpack questions of ethics, methods, analysis and participation with a specific focus on the importance of emancipatory disabiltiy research.

Abstract

Background
We are a research team of clinical, academic and advocacy-based researchers with and without learning disabilities, working on the Humanising Healthcare (for people with learning disabilities) project. The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning disabilities. As part of our ethics applications to access National Health Service study sites for fieldwork, we worked together to write guiding principles for co-producing research ethics with researchers with learning disabilities. In this paper, we introduce these Participatory Ethics Good Practice Guidelines and reflect on our collaboration.

Methods
We reflect on developing the Participatory Ethics Good Practice Guidelines. These guidelines were developed during online co-production meetings with our full research team, including advocacy-based organisation researchers, clinical researchers and university researchers. We considered consent, understanding research, and understanding research methods during the development of these Guidelines.

Findings
We present ten guidelines for co-producing research with people with learning disabilities.

Conclusions
Our findings may be helpful to researchers with learning disabilities, university and clinical researchers, funders, and those who work in research governance (e.g., ethics committees and university research departments).

Accessible Summary

• An Easy Read version of this accessible summary can be found in Appendix A.

• It is important to do disability research together with researchers with learning disabilities.

• Co-production is where researchers with and without learning disabilities work as partners. Co-produced learning disability research should be led by people with learning disabilities.

• An important part of doing research is thinking together about research ethics. Research ethics is about doing fair research that does not harm people with learning disabilities.

• We are a research team of people with and without learning disabilities. We worked together to develop 10 ideas for co-producing research.

• We called these 10 ideas ‘Participatory Ethics Good Practice Guidelines’. This paper includes an Easy Read version of these 10 ideas (Appendix B).

• Researchers with learning disabilities on our study team are not just experts in being a person with a learning disability but also experienced researchers; a point all researchers should keep in mind.

We have produced an infographic about the health inequalities facing people with learning disabilities. 

This is why humanising healthcare is so important!

Compared to the general population, people with learning disabilities die on average younger, are more likely to die from avoidable deaths, and are at a higher risk of a range of mental and physical health conditions. 

Check out our infographic summarising some of these health inequalities. 

References (select year of publication for link to publications): 1. White et al. (2021); 2. O’Leary et al (2018); 3. Mazza et al., (2019); 4. Cooper et al., (2015); 5. Vancampfort et al. (2020); 6. Henderson et al. (2022); 7. Robertson et al. (2019); 8. McMahon et al., (2022); 9.  Robertson et al. (2019); 10) Emerson et al. (2014).

Srdanovic B, D., Hayden N, Goodley D, Lawthom R & Runswick-Cole K (2024) Failing ethnographies as post-qualitative possibilities: reflections from critical posthumanities and critical disability studies. Qualitative Research in Psychology.

Recent moves from qualitative to post-qualitative inquiry can be traced back to various developments and methodological quandaries. Posthuman philosophy and methodology is one origin story of the move to post-qualitative inquiry. This broad approach contests the humanist impulse at the heart of qualitative inquiry and demands imaginative forms of post-qualitative inquiry, theory and research that engage with the more-than-human realities and nuances of everyday life. What might it mean to hold post-qualitative sympathies and tackle a foundational methodology of qualitative inquiry (ethnography) from a quintessentially posthuman position (disability)? With reference to an ongoing ESRC funded project–Humanising Healthcare–we provide two writings about the possibilities and challenges of failing ethnography. Through reference to critical posthumanities and critical disability studies theory, we attend to broken, patchwork, kintsugi and crip ethnographies that, we argue, allow us to sit in the liminal space between qualitative/post-qualitative research and human/posthuman theory.

Goodley, D. Being human as praxis: for people with learning disabilities. Subjectivity 30, 167–184 (2023). 

Gold Open Access

Abstract

The paper posits that being human as praxis—in relation to the lives of People with Learning Disabilities—offers a significant and original insight into critical and social theory across the social sciences and humanities. Drawing on postcolonial and critical disability theory I suggest that being human as praxis of People with Learning Disabilities is sophisticated and generative but is always enacted in a deeply disablist and ableist world. I explore being human as praxis in (i) a culture of disposability; (ii) the midst of absolute otherness and (iii) the confines of a neoliberal-ableist society. For each theme I start with a provocation, follow up with an exploration and end with a celebration (with the latter referencing the activism of people with learning disabilities). I conclude with some thoughts on simultaneously decolonising and depathologising knowledge production, the importance of recognition and writing for rather than with People with Learning Disabilities.

Bishop R, Laugharne R, Shaw N, Russell AM, Goodley D, Banerjee S, Clack E & Shankar R (2023) The inclusion of adults with intellectual disabilities in health research - challenges, barriers & opportunities: a mixed-method study among stakeholders in England. Journal of Intellectual Disability Research.

Background

To understand system barriers to research participation for people with intellectual disabilities.

Methods

A mixed methods approach examined the inclusivity of people with intellectual disabilities in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019-2020. An online questionnaire (stage one) was sent to the selected studies lead investigators. An expert by experience panel of 25 people with intellectual disabilities (stage 2), discussed the stage one feedback. Descriptive statistics for quantitative data and thematic analysis for qualitative data was conducted.

Results

Of 180 studies reviewed, 131 studies (78%) excluded people with intellectual disabilities. Of these, 45 (34.3%) study researchers provided feedback. Seven (20%) of the 34 studies which included people with intellectual disabilities gave feedback. Of all respondents over half felt their study had some relevance to people with intellectual disabilities. A minority (7.6%) stated their study had no relevance. For a quarter of respondents (23.5%), resource issues were a challenge. Qualitative analysis of both stages produced four overarching themes of Research Design & Delivery, Informed Consent, Resource allocation and Knowledge & Skills.

Conclusion

Health research continues to exclude people with intellectual disabilities. Researchers and experts by experience identified non-accessible research design, lack of confidence with capacity and consent processes, limited resources such as time and a need for training as barriers. Ethics committees appear reluctant to include people with cognitive deficits to “protect” them. People with intellectual disabilities want to be included in research, not only as participants but also through coproduction.