We are proud to be researchers with disabilities

By Jessica Mannion, Patricia Blee, Rhena Gallagher, Trevor Gallagher, Bryan Higgins, Mairead McHugh, and Jennifer Mulligan. The writers are members of the Relationships and Sexuality Research Team, School of Nursing and Midwifery, Trinity College Dublin. With special thanks to: Jess’s PhD supervisors, Dr. Fintan Sheerin and Dr. Vivienne Brady, School of Nursing and Midwifery, Trinity College Dublin.

Image drawn by Dr. Stephen D. Kroeger, University of Cincinnati, that captured us during our presentation.

Introduction

We are a relationships and sexuality research team. Our research is about exploring relationships and sexuality experiences of adults with intellectual disabilities. This study stemmed from a research idea for Jessica Mannion’s PhD, in the School of Nursing and Midwifery in Trinity College Dublin, supervised by Dr. Fintan Sheerin and Dr. Vivienne Brady.

The focus of this post is our journey of working together as a co-operative inquiry research team. We will highlight ways in which research can be inclusive and accessible to co-inquirers with intellectual disabilities who are new to research. It is disability pride month. We are all proud of ourselves and accept our disabilities, but we are even more proud to be researchers with disabilities. We hope that by sharing our journey, we will change societal perceptions of researchers with intellectual disabilities.

We formed a co-operative inquiry group, of six co-inquirers with intellectual disabilities, along with the initiating researcher and research assistant, both who are neuro-divergent, and are also co-inquirers. A co-inquirer is a co-researcher and a co-subject, who co-creates the findings of a research topic based on their own lives. We initially joined the research team to learn more about collaborative research and relationships and sexuality, and to create more awareness on the topic. The research team meetings were held fortnightly, for a year, each lasting between 1-3 hours. We all had the opportunity to be involved in all decisions in the study. As a group we decided what topics to research, what methods to use to explore these topics, we co-created the findings, and we also co-constructed the data analysis method and co-analysed our data together.

What we did:

Our holistic inquiry adopted a range of participant led, visual and creative methods for the data construction and analysis. This consisted of art, drawing, participant poetry, rap, creative performance and practice, joint sandboxing, LEGO® SERIOUS PLAY® and third objects. Through these creative methods we explored topics important to us about our experiences and perceptions of relationships and sexuality. Art and drawing enabled us to make visuals on a topic using a range of art materials (Gauntlett, 2007). Through using participant poetry we wrote short poems representing our thoughts on a theme (Eshun and Madge, 2021). We also used another poetic form, rap, where we worked together to create and perform raps on topics based on our lived experiences (Byrne et al., 2020). Creative performance and practice involved using drama to elicit and represent our experiences on a theme (Narbel, 2021). For joint sandboxing we created scenes with sand, water, figures and objects in response to a research question based on an aspect of our lives (Mannay, 2020). Through LEGO® SERIOUS PLAY® we built metaphors based on a theme (Hickman Dunne and Pimlott-Wilson, 2021). The final method, third objects is where we brought a made or found object to the research meeting to use as a point of reference to a discussion topic (Winnicott, 1968). After creating these visuals we shared them with the group and had a discussion to help elicit a shared understanding on the topics.

We found many factors contributed to making the research accessible and inclusive. The study was made accessible from the start with easy-to-read documents and creative methods were used to explore research and research ethics. We started the study with online meetings due to Covid regulations, however, moving the study to in-person helped us to do more creative activities. We discovered the creative methods made the research accessible and inclusive. We sometimes found it challenging to express ourselves solely with verbal methods. The imagery was effective, it kept us engaged and interested, and it made the research fun. Our top two favourite creative methods were joint sandboxing and LEGO® SERIOUS PLAY®. Other ways that we felt made the research inclusive and accessible was by being involved in every decision and the group itself who included each other. This study gave us a voice.

What now?

We are now working together on different methods to share our findings with the community. This forms part of our actions, to voice what is important to us and to create awareness on our research, with the aim for change. Two members of the group wrote two funding applications together, and were successful in gaining funding to support our dissemination activities. Our first dissemination was a collaborative presentation about our co-operative inquiry group, at the 10th International Action Research Colloquium in Dublin. We wrote and presented this together. Above you will see a picture of us drawn by the keynote speaker Dr. Stephen D. Kroeger that captured us during our presentation. All members (with the exception of Jess) had never presented at a conference before, in fact, it was our first time to even attend a conference. We felt so proud in this moment. One outcome of this presentation is a possible collaboration with the University of Cincinnati. This current article is our first collaborative publication which we have written together. In September 2022 we are holding a research seminar in Trinity College Dublin and will write another publication based on that event. We hope that we will have many future opportunities to share our research collaboratively.

Final thoughts:

As we are coming to the end of the study and working on our actions together, we are reflecting on the whole experience. After the conference presentation and as we sat down together to write this article, we experienced a range of emotions; happy, proud, emotional, excited and empowered. There is a sense of disbelief that this is happening. Growing up with a disability we were told we could not do things. Now we know we can achieve ambitious goals and our research is out there, which gives us such a sense of accomplishment. This shows how important it is to be authentically involved in all stages of research, especially dissemination, where we had the opportunity to experience this. Co-operative inquiry research can be so powerful. In this instance, many of us shared that it helped us to love ourselves and accept our disabilities for the first time in our lives. We are proud to be persons with a disability and proud to be researchers.

References:

Byrne, L., O’Connell, C., and O’Sullivan, S. (2020) Rap and Political Participation: Using Rap as a Creative Method in Research with Children and Young People. YOUNG. 28(1): pp.50-68.

Eshun, G. and Madge, C. (2021) ‘Poetic methods’, in Von Benzon, N., Holton, M., Wilkinson, C. and Wilkinson, S. (eds), Creative Methods for Human Geographers. London: Sage. pp. 205-215.

Gauntlett, D. (2007). Creative Explorations: New Approaches to Identities and Audiences. London: Routledge.

Hickman Dunne, J. and Pimlott-Wilson, H. (2021) ‘Moodboards and Lego: Principles and practice in social research’, in Von Benzon, N., Holton, M., Wilkinson, C. and Wilkinson, S. (eds), Creative Methods for Human Geographers. London: Sage. pp. 87-99.

Mannay, D. (2020) Artefacts, Third Objects, Sandboxing and Figurines in the Doll's House. In: The SAGE Handbook of Visual Research Methods, Second ed. 55 City Road, London: SAGE Publications. pp. 322-332.

Narbed, S. (2021) ‘Poetic methods’, in Von Benzon, N., Holton, M., Wilkinson, C. and Wilkinson, S. (eds), Creative Methods for Human Geographers. London: Sage. pp. 179-190.

Winnicott, D.W. (1968) On the use of an object and relating through identification, in W.D Winnicott (ed), Playing and Reality, London: Tavistock, pp. 86-94.

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