‘A life well led’?

I have been pointed to a short paper “A life well led”: What does this mean for a person with severe intellectual disability? by Stuart Wark and Martin Kingstone (recently published in the Journal of Intellectual and Developmental Disability). So for my Blog this week I will reference a few quotes from this paper that I think give us pause for reflection – well, it certainly did me. It made me think about just how much I have learned across my whole career from the many people I have met who have had severe or profound intellectual disabilities; such learning applicable across many aspects of my personal and private life, not just in my work.

In their paper, the authors set out to try and define the concept of ‘a life well led‘, but find little of relevance or clarity that the great oracle Google could point them to. However, to illustrate their understanding of this phrase, they instead use the biography of a man with severe intellectual disabilities called Greg (now sadly no longer with us). It turns out that during his life Greg was ‘a leader and a pioneer‘; a person who left a lasting impact on both his family and friends and, more broadly, on national policy in terms of disability support across Australia – no mean feat!

Greg experienced and meaningfully communicated essential first-hand opinions on a number of radical policy changes that were made during his life to educational, health and support services for people like himself. As the authors say: ‘Often, the academic sector focuses inappropriately on researchers, services or government officials for the success, or otherwise, of new disability support models – in doing so, we forget to emphasise the essential role played by people with disabilities and their families in giving feedback and guidance as to what works and, just as important, what doesn’t work.‘ Indeed.

So, perhaps we need to look more to the real-life pioneers, those actual experts by experience, to find a good working definition of ‘a life well led’ for those we care for and support (and actually, it won’t be much different than for everyone else). If we genuinely listen to their feedback, in ways that are often subtly expressed, then we might better align our goals (and service aims and educational targets) in ways that can create greater potential for genuinely inclusive, ‘a life well led’ outcomes.

In the final paragraph, they state that: ‘it is worth strongly highlighting that Greg was a valued son, sibling, friend and a colleague to many. His direct involvement in evaluating key changes to disability service models across many decades is of note, with his experiences guiding services, support workers, health practitioners, academics and government. However, most importantly, Greg has left those who knew him with a considerable compendium of positive and happy memories. That, perhaps, is the best definition of a life well led. He is greatly missed.’

Ref: Wark, S. & Kingstone, M. (2023) ‘“A life well led”: What does this mean for a person with severe intellectual disability?’, Journal of Intellectual & Developmental Disability, 48(4), 461–462.