A personal reflection by Joe Tai, School of Health Sciences, University of Dundee

Writing this, I find myself thinking of an anecdote about my time as a support worker. I’d been working with a service-user and one evening, while he was having his dinner, I found myself rather pensive. It occurred to me that he would, in all likelihood, not go to university, get a job, buy a car, put down his first mortgage. The usual milestones. It was a singularly odd sensation, that I would be concerned, and stayed with me for several days. I ended up talking to a senior support worker about it who told me, “You feel this way because you’re deciding what his milestones are, but that’s up to him, not you.”

This is a lesson that has stayed with me as a postdoc researcher in the School of Health Sciences working on the IncludeAge project, the experience has helped shaped my approach when working with co-researchers and participants with learning disabilities.

As a member of the IncludeAge team, I am trying to understand how the inclusion of middle- to-older-aged people who have learning disabilities and/or who are LGBT+ can be improved by understanding the realities of their everyday lives. These two communities are traditionally underserved parts of the population which face discrimination and underrepresentation because they exist at the intersection between being older and having a learning disability or being LGBT+.

An illustration of house and a winding road. Text in the image states "IncludeAge - Inclusion of diverse older people in community and public planes and virtual spaces"

The project brings together researchers from the universities of Dundee, Edinburgh, Hertfordshire, and Liverpool John Moores; as well as advocacy organisations such as the Scottish Commission for Learning Disabilities; and co-researchers and advisory group members from both demographic groups.

One of our core tenets is that we should promote genuine inclusion, rather than a merely tokenistic approach. Oftentimes, particularly for people with learning disabilities, decisions are made for, rather than with them, usually unconsciously and with the best of intentions. But doing so robs them off their dignity and agency, and precludes researchers from capturing what are rich and nuanced experiences of life which someone neurotypical can hardly begin to imagine.

We have been guided by our partner organisations and community advisory groups. All our printed and online materials, such as participation information sheets and consent forms, have been produced in easy-read formats and vetted by them. In addition, some of our advisory group members, and our co-researchers, all volunteered to be interviewed by the researchers, a dual benefit in that we could test the suitability of our questions whilst gaining some rich data for the study.

Last year, I and some other members of the research team went to Dudley to conduct some training workshops with our co-researchers. I found this to be a very democratic process. Designed by my counterpart at Liverpool John Moores, Dr Jacqui Lovell, the workshops were aimed, not just at providing research skills, but also at removing distinctions between ‘academic researchers’ and ‘co-researchers’, where the ideas and narratives of all attendees were given weight and attention. While us university folk were there to share some technical skills, our co-researchers were able to teach us about their lived experiences. On reflection, this experience will inform my approaches to participants and their experiences in the community at large.

A group of nine people stand facing the camera in a community centre.
Learning disabilities co-researcher training in Dudley

Genuine engagement and inclusivity are not always easy endeavours. They tend to require no small degree of consideration and resource, and more flexibility than might otherwise be expected.

Inclusive processes also require constant attention. We live in what is very much a neurotypical world, and it is startingly easy to forget the small considerations, allowances, and courtesies that can make a vast difference in how accepted someone with learning disabilities feels.

In the middle of March, I and one of our advisory group members with learning disabilities delivered a presentation about inclusive practice at the NHS and Chief Scientist Office Patient and Public Involvement event here in Dundee. We did some good preparatory work, discussing important talking points, preparing a script, and rehearsing. I thought that all was well right up until the morning of when I realised that she might need a microphone on account of her being very quiet and having a minor speech impediment. Although, fortunately, our room was rather small, it served as a reminder that there is a litany of considerations that have to be taken into account to truly include people with learning disabilities and that these considerations vary from person to person. In the end, however, I like to think we both had a good time and enjoyed working with each other, as we have on previous occasions. I was happy to see her chatting with other presenters after the workshop and sharing her own experiences with them, and I think that’s what matters most, that she felt engaged, included, and confident enough to speak with attendees.

I’ve learned that it’s not always helpful to attempt to maintain parity between the two sides just for parity’s sake when it comes to deadlines, data generation rates, and the like. Far more important, I think, to accept that each side will move at their own pace and to be flexible and adaptable enough to reconcile those differences.

If you’d like to work with us or know someone or an organisation who you think might be interested in IncludeAge, please visit the IncludeAge website or email me at jtai001@dundee.ac.uk.