Humane, imaginative and nuanced approach to disability and ageing Jem Golden

How do older people experience disability and processes of disablement, and what meanings do they make of their experiences?

How do they respond to these challenges?

In what way do the social processes of first experiencing disability with ageing differ from those of ageing with disability?

Dr Ann Leahy analyses these questions in her ground-breaking book Disability and Ageing – Towards a Critical Perspective. Published by Policy Press and to be published in a paperback edition from January, the book features in the Ageing in a Global Context series in association with the British Society of Gerontology. The book is the result of Dr Leahy’s postgraduate and postdoctoral empirical research which took place in Ireland based from the Department of Sociology, Maynooth University.

Ann had previously worked in areas of ageing in the NGO sector for a long time; made a lot of intergenerational friendships and, over an extended period, she saw her older friends going through stages from being very active to experiencing disability and she observed how that tended to be underplayed or denied by society within a desire to promote health, wellbeing and physical function.

“Organisations on disability and organisations on ageing - these tend to remain very separate and the same is true of policy making, and that seemed to me to be a lost opportunity. And when I embarked on the study [in Ireland] I decided to include people who were ageing with long standing disability. I realised how little work was done on this. I need to say I come to this as a sociologist; not as a medical person, and I confined my research to experiences of physical and sensory disability. There is relatively more research on ageing of people with intellectual disability,” explains Dr. Leahy

The two fields of study – ageing and disability have taken quite different paths.

According to Dr. Leahy, ageing is still very much analysed within a medical paradigm even in terms of how disability is understood. However, disability studies and disability activism, from the time of the development of the social model, have very much prioritised issues about society and how society disables people, while, by contrast, approaches to ageing tend to be still ‘stuck’ in the medical model approach; medicalised definitions of disability still dominate approaches to disability in older age.

“My intuition is that people who work on disability fear maybe that involvement with ageing might ?‘re-medicalise’ disability. There are gerontologists engaging with this issue more and more; with people ageing with disability and so I think this silo-ing approach is now being challenged, but there is scope for many more linkages between the worlds of disability and of ageing”, says Dr Leahy .

Ageing with a legacy of disadvantage

People who age with disability are somewhat invisible, they often age with a legacy of disadvantage which I think must be taken account of in older age. This cohort are likely not to have worked continuously or not to have worked at all so poverty is an issue. There are also risks of not having the same support due to loss of care givers or maybe not having co-habited or married to the same degree as other older people.

“There are two theories of ageing with disability. One is that people experience a double jeopardy because of age-related impairment processes on top of disability. ?The other is a kind of resilience theory suggesting that they employ strategies that they have had to develop and have used throughout their life. ?I found that it can be a bit of both. But ‘disability’ is a broad church even confined to physical and sensory disability. It can be very challenging to compare experiences because two people with different disabilities may have very different experiences”.

A small number of people in Dr Leahy’s study had never received formal education, had never been sent to school ?because of how disability was approached in the past; and, therefore, had led very confined lives at home.?Some of them were living in rural areas; often these were areas that were physically hard to navigate. For some of those people even though impairment might have worsened, there were positives that had come with ageing as they felt they stood out less. Some were ?able to make connections with other older people - that gave them a new social life; a new injection of fun.

“One woman in the book; a lot of her life had been spent going back and forth between care settings and hospitals. In that respect, she felt that ageing didn’t bring big changes because she was used to that kind of thing. Again, she was someone who was quite positive about life nowadays for various reasons including the fact that her independent living arrangements provided a high degree of support for her to make her own decisions. ??

While it was not typical of the study participants to live with that level of support, her situation highlights for me that a lot of it is not about impairment - it is about the kind of supports you have; informal family supports and supports that are provided by the public services and by community services, can make a huge difference to people...”

Crossing over from disability to ageing services can be another barrier

Another problem that emerges in the literature is sometimes there is a problem if people ageing with disability have to cross over into aged-care services from disability services and that can feel like a diminution in terms of what’s available, and the support can be perceived as less holistic. ?

That’s an issue for people ageing with disability in terms of how the frameworks in individual countries facilitate the transition from sixty four, sixty five years.

In some countries personal assistance support was subject to an age ceiling, for example. International advocacy organisations like ENIL and Age Platform Europe are beginning to focus on this pressing issue.

Also, the conversations about long-term care tend to often be about the standards of care, economic costs and so on, but the language of human rights is not applied so much within the context of long-term care. The UN Convention on the Rights of People with Disability (CRPD) definitely presents an opportunity to be more used in the area of disability and ageing.

For older people, living purposeful, connected lives remains hugely important

Dr. Leahy’s book strongly makes the case that for older disabled people, whether having aged with disability or not; the connection with other people; finding purposeful activity; having meaningful lives; all those things continue to be very important.

“Again if there is one thing I want to communicate from people that I spoke to is how engaged with life they were, wherever possible, and how much community organising meant to a lot of them. Day care centres or centres of various kind run sometimes by volunteers represents a precious opportunity to get out of the house and to meet people which is hugely life affirming.

An awful lot still needs to be done I would say to support the full aspirations of people experiencing disability in older age.

I would ask during my research: ‘What is the one thing would most improve your life?’ and I was often surprised by the answers. For example, one person in the study replied: ‘Better broadband at home’. Because he had learnt to use a computer in a centre he was attending and now he wanted to use it a lot more at home. That’s just one example of so many I came across of older disabled people wanting to continue to go on engaging and have a purposeful activity and that is terribly overlooked,” concludes Dr. Leahy.

Sources for article

Interview Dr. Ann Leahy

Ann LI Profile: https://www.dhirubhai.net/in/ann-leahy-9aaba828/

Disability and Ageing – Towards a Critical Perspective Published by Policy Press

https://policy.bristoluniversitypress.co.uk/disability-and-ageing

https://www.independentliving.org/content/webinar-2020-02