Writing, Presentations and Dissemination
Image of a hand with a pen writing 'Humanising Healthcare" on a lined note book
Different audiences, different styles
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.
Photo of the cover of the Good Practice Guidelines Document
Impact output
Barod, Sheffield Voices, Speakup Self-advocacy, Sunderland People First and iHuman Sheffield (2022). Participatory Ethics - Good Practice Guidelines. Sheffield: University of Sheffield.
Available here
This document details 10 guidelines to make ethics applications more accessible to researchers with learning disabilities.
Academic output
Goodley, D. Being human as praxis: for people with learning disabilities. Subjectivity 30, 167–184 (2023).
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.
Impact output
Barod, Sheffield Voices, Speakup Self-advocacy, Sunderland People First and iHuman Sheffield (2022). Participatory Ethics - Good Practice Guidelines. Presentation given by Vicky Farnsworth (Speakup self-advocacy) as part of the Open Research Conversation on Co-production, University of Sheffield, 12 October 2022. A recording of this presentation is now available to view in the University of Sheffield repository, ORDA
Barod, Sheffield Voices, Speakup Self-advocacy, Sunderland People First and iHuman Sheffield (2022). Participatory Ethics - Good Practice Guidelines. Presentation given by Vicky Farnsworth (Speakup self-advocacy) as part of the Open Research Conversation on Co-production, University of Sheffield, 12 October 2022. A recording of this presentation is now available to view in the University of Sheffield repository, ORDA
![Cover of a journal article: Goodley, D. Lawthom, R and Runswick-Cole, K (2022) ‘Affect, dis/ability and the pandemic’, Sociology of health &illness [Preprint]. doi:10.1111/1467-9566.13483. OPEN ACCESS](https://lh5.googleusercontent.com/jR6rqnqNQD-cu-6g7sbwzcoSw9uTCqWbfdRcT4LTc0yH0V4w_tmt8BodorVOqadfjU9bHsmYLwr7TzjOcerJOUyPe6VmaEzR1FDukJC0H_qsP8hiLODK9hdsyMYazKIA0Q=w1280)
Cover of a journal article: Goodley, D. Lawthom, R and Runswick-Cole, K (2022) ‘Affect, dis/ability and the pandemic’, Sociology of health &illness [Preprint]. doi:10.1111/1467-9566.13483.
OPEN ACCESS
Academic Output
Goodley, D. Lawthom, R and Runswick-Cole, K (2022) ‘Affect, dis/ability and the pandemic’, Sociology of health &illness [Preprint]. doi:10.1111/1467-9566.13483.
OPEN ACCESS
Goodley, D. Lawthom, R and Runswick-Cole, K (2022) ‘Affect, dis/ability and the pandemic’, Sociology of health &illness [Preprint]. doi:10.1111/1467-9566.13483.
OPEN ACCESS
Abstract
The pandemic has heightened anxieties, impacted mental health and threatened to create an overwhelming sense of existential dread. We recognise the material ways in which disabled people have been differentially impacted by Covid-19 and make a case for understanding the affective dimensions of the pandemic. We develop a theoretical approach - cutting across medical sociology and critical disability studies - that understands affect as a social, cultural, relational and psychopolitical phenomenon. We introduce a public engagement project that took place in March and April of 2020 that garnered blogspots from around the world to capture the pandemic's impact on the lives of disabled people. Our data analysis reveals three key affective themes: fragility, anxiety and affirmation. To understand the emotional impacts of Covid-19 upon the lives of disabled people we embed critical analyses of affect in the dual processes of disablism and ableism: the dis/ability complex. We conclude by considering how we might conceive of a post-pandemic recovery that places the health and well-being of disabled people at the centre of proceedings.
Image of the abstract
Academic output
Abstract
This paper makes a case for being in but not of the medical posthumanities; cognisant of our contemporary times that continue to render some human beings as valued and others as expendable. I provide a brief reading of medical posthumanities before turning to a field (critical disability studies), an event (the deployment of Do Not Attempt Cardiopulmonary Resuscitation notices to disabled people during the Covid-19 pandemic in the UK) and a response (reflected in the activism of People First; the international movement of people with learning disabilities). I contemplate some tensions that emerge when the field, event and response rub up against the medical posthumanities; working the humanist register, more-than-human possibilities and human troubles. I conclude with the argument that unless the medical humanities engage with disability then they are in danger of ‘ability-washing’ their research and scholarship
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.
Public engagement output
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).