Addressing the Challenge of Disability in Later Life

4 MINUTE READ

from Luke’s Journal 2020 | Ageing Gracefully | Vol.25 No.3

Through a collection of skilfully edited essays, this book illustrates how people with disabilities, whether life-long or secondary to the ageing process, can lead spiritually meaningful lives. MacKinlay’s introduction to the book is ground-breaking, informative and questions our knowledge and understanding of the spiritual lives of people with disabilities.

For a book filled with so many different challenges, I struggled to find a good start to this book review. I eventually decided to start with the intriguing Chapter 12: Bodhi, Karunā and Mettā: Buddhist perspectives for theology of pastoral care for the ageing and persons with disabilities (Ruwan Palapathwka). This chapter is relevant to my experience as an aged care and disability nurse. In this chapter, the author addresses issues that arise from the question “What is holistic care for the ageing and persons with disabilities?”. Having worked with both multi-cultural and Australian nurses who follow Buddhist philosophies and practices, I have witnessed first-hand their expression of compassion through person-centred care. Christians can establish common ground with Buddhists’ beliefs and worldview by answering this question together. This will lead to better outcomes for their patients and residents in care homes. While Mahatma Gandhi said, “The way we treat the ‘last person’ is a measure of our humanity” (p.91) , we can relate to a similar teaching with Jesus’ words: 

“I tell you the Truth, when you refused to help the least of these my brothers and sisters, you were refusing to help me.”
Matt. 25: 45b, NLT

Next I ventured into the world of Christine Bryden in Chapter 11. Her experience of “dancing with dementia” by living optimistically with this progressive disease touched my heart. Christine eloquently describes her journey to her inward spiritual self as dementia progressed; she was running out of time. 

After that, I read Chapter 2: Remembering the Person: Theological reflections on God, personhood and dementia, by John Swinton of the University of Aberdeen, UK. I came across a contribution from my dear friend and long-serving colleague from Nurses Christian Fellowship Australia, Margaret Hutchison. She relayed a story of a fellow nurse whose patient, Mary, would repeatedly say “God, God, God”, be pacing and displaying distressed behaviour. This situation was better understood and subsequently resolved by the nurse asking her an important question: “Are you afraid you will forget God?”, to which Mary replied “Yes, yes!” (p.32). Swinton puts forward arguments for the personhood of people with dementia that are real and ever-present “even in the midst of the experience of severe dementia” (p.33).

In Chapter 8, Hallahan draws our attention to the fact that people with disability rarely participate “at the heart of congregational life”. The perception one has of people with disabilities can create a difference in the nature of relationships one has with those who have disabilities. Hallahan introduces us to the Celtic concept “of thin places” where we are able to converge with deeper and more meaningful aspects of life (p.13). This is where she believes the marginalised live. It is a privilege for us to meet them in these “thin places” as we care for them physically and spiritually. Relationships and ‘being connected’ are the focal points of these chapters, and there are many more that will be of interest to not only nurses but other healthcare workers too. 

As the Nursing and Midwifery Board of Australia’s Standard for Practice N.1 focuses on nursing ethics, I then felt led to embrace a very difficult topic: Ethics. This is addressed in Chapters 6 and 7, by both Christopher Newell of the University of Tasmania and Rosalie Hudson from the University of Melbourne. However, such an important topic requires a Luke’s Journal article of its own. 

I recommend you source this volume and read it for yourself.

Footnote:
I bought this book at an international conference on Spirituality in Ageing, in Canberra October 2019. I heard of the work of Elizabeth MacKinlay and several other authors whose essays she edits in this volume, through my previous work as nurse educator in the field of intellectual and developmental disability.

Ageing and disability often go hand in hand, literally – we, as nurses, often ask for permission to take the hand of people who, in their fourth season of life, have acquired disability and cognitive/intellectual impairment.

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