Social Lives
Author: Ann Leahy, Post-doctoral Researcher, ERC Project DANCING, Assisting Living and Learning (ALL) Institute, School of Law and Criminology, Maynooth University. Author of, ‘Disability and Ageing: Towards a Critical Perspective’, with Policy Press.
The celebration of the United Nations (UN) International Day of Older Persons on 1 October 2022, may make some reflections on issues relating to disability and ageing appropriate. I suggest that looking at ageing and disability together is valuable, despite the fact that the fields of ageing and of disability usually tend to remain quite separate. At a most fundamental level, understandings of what ‘disability’ is may differ depending on when disability is first experienced across the lifespan. Older people experiencing impairments are not always considered ‘disabled’ and there are a range of consequences that flow from this. Specifically, ‘disability’ is approached separately from ageing within public policies, scholarship and activism, depending on whether it is first experienced early or late in life. Despite the ageing of our populations and how some 46% of older people worldwide have an impairment, it tends to be under-recognised that older people represent the majority of the overall population of persons with disabilities. Furthermore, the strict separation between ‘ageing’ and ‘disability’ is paradoxical, given that people with disabilities age and that most people will experience disability if they live long enough.
Many different understandings or models of disability inform approaches within disability studies and activism. These include social, minority group, social relational, cultural, biopsychosocial and human rights models. Crucially, they all reject a view of disability as the sole result of individual differences or biology, and, instead, ‘disability’ is linked with a range of contextual factors that include disabling physical environments, social relations and cultural representations. That is a key distinction from approaches to disability in later life, which are dominated by medicalised understandings – where, typically, ‘disability’ is seen as a straightforward inability to perform certain actions, and measures used are based on difficulties in activities of daily living (known as ADLs and IADLs). A different but related concept widely used in biomedical approaches to ageing is ‘frailty’, usually also defined in physical or medical terms. Thus, the various models of disability recognised (and debated) in disability studies and activism are largely absent in discussions of disability experienced in older age, where medicalised or individualised approaches dominate how disability is understood and how societies respond. In short, approaches to disability in older age are stuck in medical model thinking.
Consequences include the overlooking of broader influences in how disablement in older age is created. This is notwithstanding how socio-economic factors are strongly linked to experiences of disability in older age. For example, compared with non-disabled peers, older disabled people in the US are more likely to be female, to be non-White, to have less than a high school degree, and to live in poverty. (See some comparable findings from an Irish study here).
Another consequence is that limited attention focuses on subjective experiences of disability in older age. Based on a qualitative study with older people experiencing disability, I suggest that subjective experiences of disability in older age are broader than the bodily or the medical (see also here). Older disabled people (whether they first experience disability in older age or are ageing with long-standing disability) can be disabled by a range of contextual factors that are disabling at any age. These include, for example, environments such as inaccessible homes, communities or public transport. Also significant are exclusions experienced in interactions with others. That is to say, participants reported being overlooked or excluded in a range of social interactions due to disability. It means that, paradoxically, older disabled people can experience disablism even when not considered to be ‘disabled’.
Arising from my empirical findings, I argue that a relational or interactional approach to disability definition such as that enshrined within the UN Convention on the Rights of Persons with Disabilities (CRPD) offers potential for more shared understandings across the separate fields of disability and ageing. In its preamble, the CRPD states that disability results from:
‘the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’.
This definition aligns with subjective experiences of disability in older age – which can be experienced not only in an individual sense (in bodies) but also in broader contexts (as is implicit in what I have argued already).
However, as the former UN Special Rapporteur on Disability has highlighted, human rights approaches to disability tend not to be applied to disability experienced in older age, and older people experiencing impairment (or with long-term care needs) can be perceived not as people with rights but as ‘mere beneficiaries of care and welfare’. Furthermore, organisations of older people are rarely consulted by national governments in the development of disability policies. Indeed, a survey carried out amongst its member by Europe’s umbrella body on ageing found that a majority had not been involved in the implementation of the CRPD in their country and some were not even aware of its existence. This is a missed opportunity for age activism, as the CRPD represents an opportunity to strengthen a rights-based approach to disability experienced at any age.
The final point I wish to raise relates to how anticipated costs of ageing populations leads to a significant focus on prioritising active or healthy ageing to delay disability for as long as possible. The need for this is obvious. However, societies need not only, I’d suggest, to focus on preventing disability in older age (important as that may be), but to develop ideas about the potential to live lives of connection, value and meaning with disability in later life. In short, we need policy, practice and community interventions that support older disabled people in efforts to live lives of meaning and value. It almost goes without saying that this must be underpinned by ways to talk about what it is to experience disability in older age, ways that are not confined to medicalised or individual definitions.
This blog has been written within the remit of the project ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths – DANCING’. This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (Grant Agreement No 864182).
