Have you ever had a conversation that echoes? Several years ago, before working at Kingston University, a chance encounter at a bus stop was to have a marked effect on me. Moaning about the long wait, I got into a conversation with a fellow commuter, Ian*, a man with a learning disability. After sharing some full and frank observations about the bus service, we got talking about work. Ian mentioned that he had previously worked in a mortuary. I had never met someone who had done this kind of role before, and was interested to know what it was like. Ian told me while he had enjoyed it, many people thought his role was ‘creepy’. This attitude really frustrated him. To him, the work in the mortuary was so important because it involved looking after people who had died. Ian understood this was part of a bigger problem: people are simply uncomfortable with death. He wished that people knew there was no need to feel like that, because death is part of life.
While Ian was talking about people in general, I found myself reflecting on his message and what it meant for me. Looking back, I believe his words marked a turning point in my own thinking about death, setting me on a pathway towards being able to talk more openly about the topic. The conversation has echoed at different points in my life. This included talking with my father at the time when we knew that my Grandma was at the end of her life. It also came back to me when I applied to work in the Learning Disability Research Team at Kingston University. I was asked whether I would be comfortable in a job which involved talking about dying every day. With Ian’s words echoing in my mind, I answered “Yes”. Without that conversation I had with Ian years ago, and the reflections about death it prompted, I am not sure if I would have been able to answer so emphatically, and move into the job I do today.
This case is just one of many examples of how my understanding of the world has been enriched through times I have spent talking and working with people who have a learning disability. So much of my own growth – both professional and personal – has stemmed directly from these experiences. People with a learning disability have – on many occasions – pointed out something I hadn’t noticed before, challenged the way I think, or offered a completely different insight. Ian may not have realised this at the time, but his words had a profound impact on me.
In the DAPPLE Project, we recognise that the perspectives of people with a learning disability are critical to improving palliative and end of life care for these communities. To ensure people with a learning disability have a meaningful role and active voice throughout the project, we are starting a co-production group, including individuals from across the four study areas. We look forward to sharing updates about what we are learning together!
Written by Fred Inglis (Research Associate, Kingston University)
*Name has been changed
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