“A life well led”: What does this mean for a person with severe intellectual disability?

KEYWORDS:

• Memoriam
• a life well led
• ageing
• severe or profound intellectual disability
• health

A quick review of Google Scholar for content examining the concept of ‘a life well led’ surprisingly turns up very little relevant material. A Life Well Led: The Biography of Barbara Freire-Marreco Aitken (Blair, 2008) is the first option that appears, and thereafter follow articles mostly pertaining to the lives and events of key figures within various religions. However, there are very few papers that delve into an exact definition, or even a discussion, around what constitutes ‘a life well led’. The phrase itself is in common usage, and a search of standard Google turns up a lot more possibilities. Again though, there is a lack of clarity around precisely what the phrase means. In spite of this uncertainty, this does not prevent these four words being used repeatedly within ‘in memoriam’ type pieces. In this article, we are also going to use that phrase to describe a person’s life. And, in doing so, we specifically want to highlight an example of what ‘a life well led’ can mean in the context of an individual with a severe intellectual disability.

Mr Greg Germany¹ was the anonymous focus of an article in this journal in 2019 which won the Australasian Research Prize for that year (JIDD, 2020). Titled The complexity of lifelong comorbidities with severe intellectual disability, it reviewed Greg’s life since a child and some of the ongoing challenges he faced to simply get appropriate health-care and support (Wark & Kingstone, 2019). This paper has since been adopted in the teaching curriculum in a number of universities in Australia to assist students to understand some of the issues in accessing health care by people with intellectual disabilities. Sadly for his family and many friends, Greg passed recently. Unlike memoriam articles in other prestigious journals, Greg does not have an exhaustive biography of national and international awards, honorary titles or distinguished academic accomplishments for us to report. However, he certainly can be described as a leader and a pioneer; what our previous article did not capture is the lasting impact that Greg had on both his family and peers, as well as more broadly in how disability support is provided in Australia.

Greg’s life was intertwined with many seminal moments of change in disability support provision. He started his education in a special school, which at that time was run independently by a local charitable disability support organisation. He experienced change when that school came under the auspices of the state education system, and was then one of the first people to move from that segregated model into a mainstream setting. Following the recommendations arising from the 1983 Richmond Report (see NSW Mental Health Commission, 2014), Greg was part of the first pilot in rural NSW involving the transition of individuals from institutions into community-based group homes. At the end of his high school years, he was again a leader in being one of the initial participants in the new state funded Post School Options program. Throughout all of this time, the thoughts of Greg and his family were specifically sought in order to guide current and future service delivery. The experiences of both Greg and his peers with these new systems were pivotal in determining what types of support were considered most appropriate.

As he started to experience new health issues associated with ageing, he was again a vital contributor over many years in enhancing our learning and understanding of age-related change in people with severe and profound intellectual disability and how services need to adapt to meet emerging needs (e.g., Hussain et al., 2020; Wark et al., 2013; Wark et al., 2017). 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.

When asked for a specific memory of Greg, the immediate reaction of all his friends and peers was to smile. There are too many individual examples to include here, but two in particular stood out as exemplifying Greg and his sense of humour. Firstly, many of his friends identified his joy, and associated laugh, when doing a favoured activity. His great love of trains is a prime example of an interest that bought him considerable pleasure. Secondly, and as an example of his occasionally ‘mischievous’ nature, Greg had some very gentle ways to clearly let staff know how he felt about them at a particular point in time. Greg had limited expressive communication and used a photo board; for example, each staff member would have their photo taken and it would then be put onto the board to inform Greg who was timetabled across the week to assist him. When Greg was very happy with a staff member, he would ‘steal’ the photo off the board and put it under his pillow. Equally, if he was less pleased for some reason, their photo may turn up in the washing machine … 

Finally, 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.

Acknowledgements

We would both like to again acknowledge the immense contribution made by both Greg and his family over many decades, and extend that appreciation to all individuals, their families, friends and carers who contribute so much to bettering the lives of persons with intellectual disability.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Greg’s family has provided written consent for him to be identified in this article.