A recent seminar series at the Institute of Population Ageing provided insightful explorations into the intricate landscape of ageing with a disability, bringing attention to a population subgroup often eclipsed in broader discussions on ageing. It is imperative for this discussion to clarify the term "disability" in order to ensure that it is applied with careful consideration of its diversity. In short, the term disability encompasses a spectrum of conditions and impairments with distinct ‘onset timings’.
An important focus of the seminar revolved around highlighting the vital distinction between two populations: those ageing with a disability and those ageing into disability. The former pertains to individuals developing disabilities during their formative years. These disabilities might have origins in childhood, adolescence, or early adulthood. The emphasis here is on the acquisition of disabilities at a stage where personal identity, social connections, and life experiences are still in the process of formation. In contrast, people who age into disability are those who develop a disability in the later years of life (i.e., hearing loss or reduced cognitive function after a stroke) which is directly attributable to the ageing process. These individuals might have lived a significant part of their lives without impairment, and the impact of disability becomes pronounced as they move into older age.
Although the seminar presentations offered a broad view, they also captured the particular experiences of individuals with lifelong conditions such as Cerebral Palsy, Tourette’s syndrome, Autism and Intellectual Disabilities. However, despite the presenters’ wealth of knowledge, a clear concern emerged; there is a critical gap in our understanding of the far-reaching implications of ageing with a disability. Notably, in the UK and many other nations, not only is a comprehensive policy framework for ageing with a disability conspicuously absent, but there is also a lack of strategic directions for service development.
The seminar series concentrated on scrutinising the intricate experiences of the ageing process for individuals encountering both ageing and a disability. This prompted consideration of the ways in which ageing might differ for this specific population. Research indicates that individuals ageing with a disability follow a distinct trajectory, which can often act as a barrier to their being integrated into existing aged care systems. The phenomenon of "accelerated ageing" and the emergence of secondary conditions contribute to unique challenges and distinct support needs for people ageing with disabilities. Notably, these challenges manifest approximately 20–25 years earlier than those who are without disabilities. For instance, individuals with Down syndrome may experience early-onset Alzheimer's, while those with cerebral palsy may confront premature declines in physical abilities.
Individuals ageing with a disability may also have a reduction in social networks and limited resources, which is often a consequence of particular challenges such as limited employment opportunities. This can be the result of systemic barriers, including discriminatory hiring practices, a lack of workplace accommodation, and societal misconceptions about the capabilities of individuals with disabilities. These hurdles not only limit disabled people’s access to financial resources but also contribute to a diminished sense of social inclusion, as meaningful connections often intertwine with professional spheres of life.
Unfortunately, specialist service providers often find themselves inadequately equipped to address the distinct needs of this unique demographic, who frequently grapple with the challenge of distinguishing between age-related secondary conditions and the effects of long-term disabilities. A notable challenge is that many clinicians find it difficult to differentiate between the effects of prolonged disability and the onset of age-related secondary conditions. Michelle Putnam highlights this predicament by stating, ‘A challenge for gerontological social work is that individuals aging with disability are not our traditional consumers or clients.’ She points out that the predominant focus of gerontological training revolves around older adults who are ageing into disability. This knowledge gap is exacerbated by the fact that existing organisations, systems, and policies are typically tailored for adults ageing into disability, with mission statements and program delivery options reflecting this perspective. Consequently, individuals ageing with life-long disabilities are left with unmet needs, prompting the critical question of whether successful ageing is a feasible outcome for this overlooked segment of the population.
To comprehend the scarcity of research and the unpreparedness of services, an exploration of historical contexts is essential. Ageing with a disability has only recently gained recognition as a phenomenon deserving attention. Historically, individuals with disabilities have significantly shorter life expectancies, leaving the implications of longevity largely unexplored. The current situation of those with disabilities, however, has undergone a transformation. For example, the life expectancy of people with Down syndrome in the 1940s was a mere 12 years, a stark contrast to the current life expectancy of approximately 60 years in developed countries. Advances in medical care, evolving societal attitudes, and policies promoting inclusivity have significantly extended the lifespan of individuals with disabilities. This stands in stark contrast to eugenic policies and practices that historically constructed individuals with disabilities as perceived biological threats to society. The consequences were bleak, marked by mass institutionalisation and the legitimisation of abuse; a situation which significantly shortened the lives of those with disabilities. However, transformative shifts occurred as society grew more sensitive and developed positive attitudes towards people with disabilities. This change was triggered by the return of veterans from World War II, many of whom grappled with physical disabilities and mental health issues. This shift paved the way for disabled individuals’ ability to access appropriate medical care, social services, and the formation of relevant policies which resulted in huge improvements to their lives.
The extended longevity of individuals with disabilities presents new challenges that require a fundamental shift in both research and service provision. To truly understand and address the multifaceted challenges of ageing with a disability an interdisciplinary dialogue between gerontology and disability studies is imperative. Historically, these disciplines have operated in silos, each with its own perspectives.
Within the field of gerontology, a predominant focus has traditionally been on normative aspects of ageing, exploring the potential development of additional disabilities, and examining the economic implications of these factors. The lens through which gerontology approaches disability is often rooted in the medical model. From this perspective, disability is perceived through notions of loss and failure. Here disability is viewed as an impediment that deprives individuals of the ability to age successfully and/or engage in what many consider to be common life activities. This perspective tends to emphasise the individual's impairment as the central issue.
Contrastingly, in the field of disability studies, a different conceptual framework prevails—the social model. According to this perspective, disability is not a problem inherent in a person’s impairment, but is instead shaped by societal barriers and attitudes. In this regard, disability is considered as a neutral aspect of human diversity, with the focus shifting towards addressing external factors that hinder full participation and inclusion. This position is succinctly expressed by Ansello: ‘For the disabilities system, ageing is a success, for the ageing network, disability is a failure.’
The distinction between gerontology and disability studies, rooted in different ideologies and disciplinary approaches, might have hindered collaboration between these two fields. The divergence in perspectives, where gerontology often views disability as a negative consequence of ageing, and disability studies sees it as a neutral aspect contingent on societal factors, has created a disciplinary divide. This latter is further reinforced by the limited exchange of ideas and insights between researchers in ageing and disability studies. A review of citations conducted by Molton and Ordway in 2019 revealed a striking lack of cross-disciplinary engagement, indicating that researchers in these fields are not familiar with each other's work.
As a consequence of these entrenched disciplinary differences, the potential for a holistic understanding of the complex relationship between ageing and disability is impeded. A collaborative dialogue between gerontology and disability studies is not only crucial for bridging these disciplinary gaps but also for generating a more comprehensive and inclusive body of knowledge. It is only through the integration of these diverse perspectives that researchers, policymakers, and practitioners can forge a more unified and nuanced approach to address the needs of individuals ageing with disabilities. This collaborative effort holds the promise of enriching both fields and, most importantly, fostering improved quality of life for this demographic.
In conclusion, a collaborative effort between gerontology and disability studies is imperative. By integrating the diverse perspectives of older people with disabilities, researchers, policymakers, and practitioners can forge a more unified and nuanced approach to address the needs of individuals ageing with disabilities. This collaborative endeavour holds the promise of enriching both fields and, more importantly, fostering an improved quality of life for those living with disabilities. Navigating a forward course through these challenges is not simply an academic pursuit, but a call to action for societal inclusivity and the betterment of the lives of those ageing with disabilities.
Dr Melina Malli is a Senior Research Fellow at the Oxford Institute of Population Ageing.
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