A Personal Reflection on the Inaugural Meeting of the DRN’s Co-production Group, 29 January 2023

By Joanne Sansome

The DRN’s Co-production group met for the first time in person at The Cube in QUB on Saturday 29 January 2023. Eight disabled young people attended the meeting representing the Mae Murray Foundation, Action Deaf Youth and Barnardo’s: Oran, Sean, Ross, Erin, Jeffrey, Leah, Kellie and Caitlin.

I co-facilitated the meeting with Berni Kelly and Bronagh Byrne from the DRN at QUB. The Cube was a very relaxed informal, spacious, inclusive and accessible setting.  The space itself meant that everyone was free to move and interact without any environmental barriers.  By environmental barriers, I mean, as a powerchair user etc. there was no obstacles to moving around. For example, I did not have to ask anyone to move a chair or themselves for me to pass by.   Going between the table discussions was also easy, as there was plenty of spaces around each table to join each group. 

During the discussions I was delighted that a strong understanding of research come through from the lived experience of ‘being researched’ and that this positively, yet sadly, has built an empathic understanding of ‘bad research’ and ‘good research’ practices. The latter helps to build an enthusiastic, inclusive foundation to create co-produced research around shared common issues identified as priority research, such as education and social inclusion.

These themes caused me to reflect back on my memory of being a young adult, living life with a disability… and education and social inclusion was (for sure) the dominant factors, as you just want to ‘be a teenager/young adult’ going to school, college or university and socialising etc. but the many barriers can sometimes hinder social plans, cause disappoint and well suck… highlighting them, highlighting your disability, when you just want to be seen as young person, not a person with a disability, is hard… but, as your life experiences change and widen, at least in my case (and many in my friend group), you start to question more… I see the need for a wider societal approach to ‘inclusion’ grounded in legislative law and social policy implementation, reforms and changes to impact and support community inclusion… addressing wider societal concerns, like health, education, employment, housing and governance. 

Gatekeepers, government agendas and funding priorities can lead to the voices of deaf and disabled people becoming misinterpreted or reframed ‘to get the funding’ and can determine the focus of an entire body of research or a single project,  which could also account for why many of the young people present were still saying that they did not always feel that research conveyed what they wanted or felt, sadly (as was my experience) that was if they, even, got to see the final research or any outcomes!

On refection on the co-production group meeting as Joanne, a person with a disability, as opposed to Joanne, the social researcher… I guess I was not expecting to still be talking and writing about issues and concerns that I was experiencing over 25 years ago… Does this mean that we need to see disability is a social microcosm of society and change the narrative by following a broader rights-based research agenda that captures our intersectionality and interdependence?