Introduction
Even though research on disability and ageing has historically developed on different paths, research on the intersection of these two fields has recently increased (e.g. Kröger, Reference Kröger2009; Jönson and Taghizadeh Larsson, Reference Jönson and Taghizadeh Larsson2009; Freedman, Reference Freedman2014; Leahy, Reference Leahy2018, Reference Leahy2021; Yoshizaki-Gibbons, Reference Yoshizaki-Gibbons, Ellis, Garland-Thomson, Kent and Robertson2018; Era, Reference Era2021; Putnam and Bigby, Reference Putnam and Bigby2021). Persons with early-onset disabilities live longer than before and, at the same time, the number of people acquiring disabilities with ageing has been increasing, resulting in a further overlap between the two research fields (Molton and Ordway, Reference Molton and Ordway2019). This development has led to an increasing overlap and blurring of the boundaries between disability and long-term care policies: there are more and more older people using disability services and, at the same time, the number of people with early-onset impairments using long-term care is increasing. However, the interplay between ageing and disability policies is clouded by unresolved issues: older disabled people are often marginalised in disability policies (Jönson and Taghizadeh Larsson, Reference Jönson and Taghizadeh Larsson2009), whereas ageing discourse tends to emphasise healthy and active ageing, which may not be inclusive (Naue and Kroll, Reference Naue and Kroll2010).
The former Special Rapporteur on the Rights of Persons with Disabilities (Devandas-Aguilar, Reference Devandas-Aguilar2019) has stated that older disabled people have weaker rights than disabled people of other ages. Older disabled people may not be included in disability policies, nor in ageing policies (Raymond and Grenier, Reference Raymond and Grenier2013; Raymond, Reference Raymond2019). This condition may lead to double jeopardy as older disabled people fall in between the two separate strands of services, policies and communities. One reason for this in-betweenness can be conceptual barriers and approaches between the two research and policy fields (Leahy, Reference Leahy2018: 42; Molton and Ordway, Reference Molton and Ordway2019).
Accordingly, this article takes its starting point in the conceptual barriers within these two research fields of ageing and disability. We aim to discuss the conceptual differences and similarities of the two research streams to contribute to mutual learning and constructive dialogue that could lead to equal inclusion of all older disabled people in policies and research.
In many ways, disability models dictate how disability is approached in societies, and influence which disciplines and professions study and teach about disability (Smart, Reference Smart2009). Furthermore, models of disability influence the public perception of disability, as well as shape the identity of disabled people (Smart, Reference Smart2009). If the approach to disability is individual and functional, the responses will be individual, and the professionals dealing with disabilities will be from the fields of medicine and rehabilitation, for example. On the other hand, if the approach to disability is more social, the responses to disability are similarly social, for example, considering the accessibility of the environment. Often this is visible in disability and ageing policies: disability policies focus on ensuring participation in society with disability, whereas ageing policies are more medically oriented and deal with medical and long-term care (Monahan and Wolf, Reference Monahan and Wolf2014; Leahy, Reference Leahy2018). Hence, the conceptualisation of disability in ageing and disability policies has great implications for how the service system is organised at the intersection of disability and old age. As research informs policy, we review exemplars from disability studies and ageing research to better understand the divide in policies.
The conceptual understanding of disability in research on disability has developed from a medicalised individual model that views disability as a personal tragedy, to social models that recognise the barriers to participation that disabled people face (Oliver, Reference Oliver2009). The social model of disability has been used in developing influential policy instruments, such as the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD) and the World Health Organisations’ (WHO) International Classification of Functioning, Disability and Health (ICF), although the conceptualisation of disability differs from the social model in both. In disability studies, the theoretical and philosophical discussion around the concept of disability is active. Ageing research, on the other hand, has theorised disability in relation to, for example, theories of the fourth age and frailty, but also from the viewpoint of environmental and social barriers (Leahy, Reference Leahy2021). Nevertheless, the concept of disability has tended to be more medically focused in ageing research (Monahan and Wolf, Reference Monahan and Wolf2014), even though as a research field it is broad and multidisciplinary and also includes theories and ideas far from medical thought.
Disability in old age, however, is still a relatively new concept. In literature, ageing with disability and disability with ageing (or ageing into disability) have often been differentiated from each other. Ageing with disability refers to a situation where a person with early-acquired or congenital impairments ages, whereas disability with ageing refers to the process of acquiring impairments in old age, with no previous disability (Verbrugge and Yang, Reference Verbrugge and Yang2002). Disability research often focuses on ageing with disability, whereas disability with ageing is studied in ageing research (Molton and Ordway, Reference Molton and Ordway2019: 5S). Often, disability with ageing has not been considered to ‘belong’ in the disability sphere: disability in old age is regularly understood as a ‘normal’ process that inevitably happens with ageing (Kelley-Moore, Reference Kelley-Moore, Phillipson and Dannefer2010). Similarly, Priestley and Rabiee (Reference Priestley and Rabiee2001, Reference Priestley and Rabiee2002) have found that ageing and disability communities may not recognise older persons with age-related disabilities as disabled as this type of disability is often viewed as a phenomenon that ‘happens with old age’.
Research on the conceptual base of the nexus of old age and disability is relatively scarce, although theoretical work has been done, for example, related to the intersection of ableism and ageism (Yoshizaki-Gibbons, Reference Yoshizaki-Gibbons2016), social locations of older disabled people (Grenier et al., Reference Grenier, Griffin and McGrath2016), cultural construction of disability and old age (Priestley, Reference Priestley, Riddell and Watson2003a, Reference Priestley, Goodley and Lawthom2005), ‘normal’ ageing (Kelley-Moore, Reference Kelley-Moore, Phillipson and Dannefer2010), as well as ageing with disability from a life course perspective (Priestley, Reference Priestley2000, Reference Priestley2003b; Jeppsson Grassman and Whitaker, Reference Jeppsson Grassman and Whitaker2013). Even though work has been done in the intersection of disability and old age, the concept of disability in older age is less widely explored and there is a need for a more unified understanding of it (Leahy, Reference Leahy2018). To contribute to developing such an understanding, this study analyses how disability has been conceptualised in the intersection of disability and ageing in two example journals, one from ageing research (Ageing & Society) and one from disability studies (Disability & Society).
In this article, we aim to provide answers to the following research question: what are the key conceptual approaches to disability in the nexus of disability and ageing in two example journals from the fields of ageing research and disability studies and how do the approaches differ between the journals? By answering these questions, we aim to identify some of the key conceptual gaps between the two research streams and contribute to their constructive dialogue. Our final goal is to examine how older disabled people could be better integrated into the discourse of ageing and disability studies as well as in disability and care policies.
Conceptual approaches to disability and old age
To develop disability policies, analysing concepts is essential as ‘conceptual understandings of disability continue to shape policies’ (Fisher and Robinson, Reference Fisher, Robinson, Robinson and Fisher2023: 4). In their introduction to disability policies, Fisher and Robinson (Reference Fisher, Robinson, Robinson and Fisher2023) show how policies vary depending on how disability is understood: if the understanding of disability is medical and individual, the interventions may be focused on individualistic health interventions by medical professionals. On the other hand, with a more social approach to disability, support for participation in society is of importance. Disability models have played a major defining role in the concept of disability. According to Smart (Reference Smart2009: 3): ‘[M]odels of disability define disability, determine which professions serve people with disabilities, and help shape the self-identities of those with disabilities’. She also stresses the models’ power in service organisation and delivery (Smart, Reference Smart2009).
As a concept, disability has been understood in diverse ways throughout history. The most usual way of looking at disability conceptualisations is to divide them into individualistic and social approaches (Vehmas, Reference Vehmas2004). For the purposes of this article, we name these two categories sociomaterial and individual-functional approaches. After their description, we discuss how these approaches are present in two influential international policy documents, the ICF and the UNCRPD.
Sociomaterial approaches
Since the emergence of disability studies as a research field, disability studies have conceptualised disability mostly through sociomaterial approaches to contrast the traditional, medicalised view of disability. Until then, disability was primarily seen as a medical condition and a personal tragedy, and the power over the definition of disabilities was mainly with medical professionals (Vehmas, Reference Vehmas2004). With other social movements, the 1960s and 1970s saw an increase in disability activism and, through consistent advocacy, a major change in how disability was conceptualised. In the mid-1970s, a group of disabled activists in the UK called the Union of Physically Impaired Against Segregation (UPIAS) presented a revolutionary idea that it was not impairment that was the main reason for social exclusion of people with impairments but how the society responded (Oliver, Reference Oliver2009: 43). From this thought, Oliver (Reference Oliver2009) formulated the social model of disability.
The social model makes a distinction between impairment and disability, where disability is something which is imposed on people by the barriers that exist in the environment, in addition to their bodily impairment (Barnes, Reference Barnes, Watson, Roulstone and Thomas2012: 13). The social model has faced critique in disability studies, for example for disregarding the body and the diverse lived experiences of people with impairments (e.g. French, Reference French, Swain, Finkelstein, French and Oliver1993; Shakespeare and Watson, Reference Shakespeare, Watson, Barnartt and Altman2001; Thomas, Reference Thomas2004). The social model has many adaptations in different cultural locations: for example, in North America and Canada, disability has been studied as a cultural and minority identity (Siebers, Reference Siebers2008), and Nordic scholars have followed a relational model that takes a more interactional and relational stance on disability (Gustavsson et al., Reference Gustavsson, Tøssebro, Traustadóttir, Gustavsson, Sandvin, Traustadóttir and Tøssebro2005: 32).
Even though ageing research has had a more medical orientation, some strands in ageing research focus on sociomaterial issues, as well. In environmental gerontology, disability in older age has been analysed through the concept of person-environment fit (Wahl and Weisman, Reference Wahl and Weisman2003; Wahl et al., Reference Wahl, Fänge, Oswald, Gitlin and Iwarsson2009), which comes rather close to a relational or interactionist approach to disability in disability studies. Critical gerontology as a field contests the overmedicalisation of ageing and questions the biomedical underpinnings of ageing research and policies (Baars, Reference Baars1991; Ranzijn, Reference Ranzijn2015), as does cultural gerontology (Twigg and Martin, Reference Twigg and Martin2015). Critical and cultural gerontologists have presented critiques to contest, for example, the paradigms of successful (Minkler and Fadem, Reference Minkler and Fadem2002) and active ageing (Timonen, Reference Timonen2016) that often present disability as an individual functional limitation. In addition, representational and cultural issues – similar to those in disability studies – have been studied extensively (e.g. Twigg and Martin, Reference Twigg and Martin2015; Martin and Twigg, Reference Martin and Twigg2018). Many similarities and ways of bridging critical gerontology and disability theory have been found throughout the years (e.g. Kennedy and Minkler, Reference Kennedy and Minkler1998; Yoshizaki-Gibbons, Reference Yoshizaki-Gibbons, Putnam and Bigby2021). However, in ageing research generally, disability as a concept has mostly been understood as an individual characteristic rather than a social issue: ‘something a person has rather than experiences’ (Leahy, Reference Leahy2021: 9).
Individual-functional approaches
Disability studies have relied on the social models emphasising independence and questioning the medical framework, whereas ageing research and policies have had a more medical orientation to disability concentrating on understanding and preventing disease and loss of function (Monahan and Wolf, Reference Monahan and Wolf2014). We name these approaches individual-functional approaches. According to Leahy (Reference Leahy2021: 22–26), gerontological biomedical research mostly understands disability in general as the inability to do certain actions, whereas environmental and social gerontology sees disability more broadly and considers its environmental and social conditions. In mainstream gerontology, broader approaches to disability remain marginal as theorising is dominated by discussions about frailty or ‘the fourth age’, that is, the period after an active retirement age characterised by decline and impairment (Leahy, Reference Leahy2021). In addition, the rhetoric of active, successful, and healthy ageing emphasises the individual nature of disability and policy focus on preventative action rather than participation in society regardless of disability (see, for example, Gibbons, 2016 on compulsory youthfulness).
Conceptual approaches in international policy documents
The models or approaches to disability are not only theoretical foundations for research but they also form the grounds of some influential international policies on disability. We discuss here two major policy documents that are important to the field of disability and ageing: the ICF of WHO and the CRPD of the UN. They are very different in nature since the UNCRPD is a legally binding instrument that national legislation has to comply with when ratified. The ICF, on the other hand, is a classification instrument that can be used as a tool in formulating policies to assess disability. Nevertheless, these two documents are often referred to in research, as well, to indicate that the understanding of disability complies with the document.
The ICF seeks to integrate the medical and social models as a ‘bio-psycho-social synthesis’ and therefore takes a biopsychosocial approach to disability and functioning (WHO, 2013: 5). The emergence of the biopsychosocial model can be traced back to the medical field in the 1970s, where Engel (Reference Engel1977) developed the model to broaden the medical model in way that would consider the social and emotional aspects (Borrell-Carrió et al., Reference Borrell-Carrió, Suchman and Epstein2004). Some scholars see the biopsychosocial model as a middle ground between the social and the medical (Leahy, Reference Leahy2021). However, it can be interpreted individualistically, resulting in harmful policies (e.g. Chou and Kröger, Reference Chou and Kröger2017; Shakespeare et al., Reference Shakespeare, Watson and Alghaib2017; Hunt, Reference Hunt2022).
Despite its wide use, the ICF and the biopsychosocial model have critics in the disability field. Oliver and Barnes (Reference Oliver and Barnes2012: 26) argue that although its purpose is well-intended, the starting point of the biopsychosocial model is still the individual and the body, which the disability movement always aimed to contest. In addition, Kennedy (Reference Kennedy2017) argues that the biopsychosocial model emphasises psychogenic explanations to impairments rather than their impacts of them, and therefore policies based on the model may be dismissive, or, ‘blaming the victim, all over again’ (Shakespeare et al., Reference Shakespeare, Watson and Alghaib2017: title). The ICF has also been applied in ways that strengthen the medical approach to disability in disability policies (Chou and Kröger, Reference Chou and Kröger2017; Shakespeare et al., Reference Shakespeare, Watson and Alghaib2017).
Today, one of the most significant documents on disability is the UNCRPD adopted in 2006. It is a binding international legal instrument that must be implemented in countries where it is ratified, and hence, influences disability policies worldwide. The UNCRPD focuses on human rights and thus embodies a human rights-based approach. The approach of the UNCRPD has been interpreted to represent the social model of disability (Egdell et al., Reference Egdell, Stavert and Mcgregor2018) and the biopsychosocial model (Leahy, Reference Leahy2018). However, even though inspired by the social model thinking of interactions between disabled people and disabling barriers, the human rights-based approach to disability is distinguished from these models as it is based on international human rights laws, namely the UNCRPD in this case. The approach of the UNCRPD has spread throughout disability studies, as has the specific human rights model that has stemmed from it (e.g. Degener, Reference Degener, Della Fina, Cera and Palmisano2017; Committee on the Rights of Persons with Disabilities, 2018). Both the human rights-based approach and the human rights model emphasise the recognition of disabled people as rights-holders and the States’ obligation to ensure those rights (Office of the High Commissioner for Human Rights, 2014; Committee on the Rights of Persons with Disabilities, 2018).
The disability models and approaches we presented here are not exhaustive. In our analysis, we focus on the most fundamental distinction between the social and individual approaches. We make this distinction here to analyse the conceptual differences between ageing research and disability studies and to contribute to the development of constructive dialogue between these two research fields.
Methodology
To study the conceptual approaches within the intersection of disability and ageing, we selected two journals that best fit our aims. From both fields of ageing research and disability studies, we searched for a journal that (1) publishes in English, (2) is international, (3) is mostly social scientific and focuses on societal issues, (3) has published in 1990–2020, and (4) is well-known and widely cited in its research field. In addition, we aimed to find two journals that would be relatively comparable in terms of journal metrics (see Table 1). Based on these criteria, we identified two journals, Ageing & Society and Disability & Society, which are both UK-based. Although their publication volumes are dissimilar, both have published a sufficient amount of articles that fit our purposes, that is, to identify the differences and trends within the fields. Table 1 presents the basic information of the journals.
Table 1. Information on the journals
* As stated on their respective websites.
In this article, we focus on the conceptual approaches used in research published in AS and DS during the thirty-year timespan of 1990–2020. We focus on the concept of ‘disability’ and articles that specifically use that term. Hence, we do not use search terms like ‘impairment’ or impairment-specific terms like ‘stroke’, for example. With this restriction, we realise we may exclude some important contributions to this nexus. However, we focus here on scrutinising the concept of disability because of its varied understandings that impairment-specific definitions often do not have. Data were gathered systematically from the two journals. The database search was conducted through the Web of Science for both journals. To find all relevant articles, we conducted a primary and secondary search. In the first search, we used the same search terms for both journals, which found most of the relevant articles. Nevertheless, with the second search using different search terms, we still found certain articles that fit our inclusion criteria. After the two-phased search, we read and selected the abstracts of the found articles according to the inclusion criteria (Table 2). After excluding all items that did not fit our criteria, 109 articles were left: seventy-six from AS and thirty-three from DS.
Table 2. Search terms and inclusion and exclusion criteria
Fig. 1 shows the volume of articles that discuss ageing and disability in the two journals. The volume has been increasing, particularly in AS. In 2020, both journals increased their volume of articles on the intersection of ageing and disability. It is noteworthy that more articles were found in AS than in DS.
Figure 1. Number of articles discussing ageing and disability in AS and DS, 1993–2020.
The analysis was carried out by the first and second authors: the first author searched and explored the data by doing word searches in ATLAS.ti, read and re-read the abstracts and did the first round of coding, then the second author confirmed the coding and did initial thematisation, based on which the final categorisation was then made by the first author.
First, we searched for the most used words with ATLAS.ti. This procedure provided indications of the themes that the articles focused on and the kind of terms they used. For example, we found that the most used words in the abstracts in DS were ‘disability’, ‘disabled’ and ‘people’, whereas AS focused more on ‘care’ and ‘disability’.
Second, we read the abstracts thoroughly to gain an idea about the articles and used thematic codes to indicate how disability is approached in the abstracts. For abstracts without any indication of the conceptual approach to disability, we searched disability-related words in the main text of the articles to find the parts that discussed disability. Based on those parts, we created twelve codes in AS and twelve in DS, from which six were common to both. After coding the articles, the codes were then merged into larger categories. For example, in DS, codes ‘bad health’, ‘impairment’, and ‘individual inability’ were merged into ‘disability as individual limitation’.
We interpreted the approaches by how disability was described. For example, if disability was defined by using specific tests of physical capability, we interpreted it as being measurable and functional. If disability had no specific definition, we interpreted its conceptualisation by the surrounding words and ways of writing about it. For example, if disability was referred to as ‘a disability’ and an older person with disabilities as ‘an older person who suffers a disability’ (Breda and Schoenmaekers, Reference Breda and Schoenmaekers2006: 540), it was interpreted as a synonym for impairment in this analysis. The reason is that it implies one specific condition that a person suffers rather than a broader interaction of many elements. If the authors used the word ‘impairment’ in a different sense than ‘disability’, disability was interpreted as referring to a broader concept than the individual condition (e.g. Simcock, Reference Simcock2017). Similarly, if discussions on the surrounding barriers in the emergence of disability were provided, we interpreted it as a reference to social approaches to disability. The categorisation of the analysed articles and full citations are provided as Supplementary Material. Supplementary Material is available at https://doi.org/10.1017/S1474746424000058.
Finally, we analysed the conceptual approaches more closely and selected parts of the articles that expressed well such approaches. In the Findings section, we examine the conceptual approaches that are present in these text sections.
Findings
Ageing & Society
The dominant conceptual approach in AS considers disability as an individual limitation: disability was mostly studied as an impairment of a person who needs care, and it was seen as quantifiable and recognisable. However, another less dominant approach was also visible: disability with a social perspective, especially leaning towards the social models of disability. Next, we will present the two approaches in detail.
Individual-functional approaches
Most of the AS articles shared the approach to disability as an individual limitation, where disability was discussed as a measurable issue mostly related to the functional capacity of individuals. The topics of the articles varied; many articles discussed the care of older disabled people, whereas others studied the effects of disability on, for example, socio-economic situation (Olivera and Tournier, Reference Olivera and Tournier2016). Long-term care for older persons was the most frequent topic in AS.
Throughout the studied period, care was depicted as a necessity for older persons with disabilities. In care topics, disability was discussed from slightly different viewpoints, though within the individual-functional approaches. In many articles, disability was studied as a predictor of care needs. Their results showed that older persons with disabilities need and receive considerable care (e.g. Davey et al., Reference Davey, Savla, Sundström, Zarit and Malmberg2007). In addition, the care trajectories of older disabled people were discussed as well as the careers of informal and formal carers (e.g. Romoren, Reference Romoren2003).
For example, Hu and Ma (Reference Hu and Ma2018: 772) defined disability by activities of daily living (ADL) and instrumental ADL (IADL):
People who reported having IADL disabilities only or having difficulty in performing any of the ADL tasks were regarded as having mild disability; people with one ADL disability were regarded as having moderate disability; and people with two or more ADL disabilities were regarded as having severe disability. The rest were considered independent people.
The above definition considers disability literally, that is, dis-ability of I/ADL, not being able to perform these activities. Hence, disability in this context may not be synonymous with impairment but rather with inability. However, from a wider perspective, disability is derived from the individuals and their condition.
Within the individual-functional approaches, the articles were mostly large-scale quantitative studies using surveys of older persons (e.g. Davey et al., Reference Davey, Savla, Sundström, Zarit and Malmberg2007; Rogero-Garcia et al., Reference Rogero-Garcia, Prieto-Flores and Rosenberg2008; Hu and Ma, Reference Hu and Ma2018) and their caregivers (e.g. Schofield et al., Reference Schofield, Murphy, Herrman, Bloch and Singh1998; Barnes et al., Reference Barnes, Torrington, Darton, Holder, Lewis, McKee, Netten and Orrell2012), combined with register data (Liao et al., Reference Liao, Yeh, Lee, Liao and Lee2018).
Only a few qualitative studies that used an individual-functional point of view were among the articles on the intersection of disability and old age. For instance, Degiuli (Reference Degiuli2010) conducted interviews with Italian family carers. Disability was mentioned by the interviewees, and discussing the findings, the author briefly refers to a disability assessment performed in geriatric units (Degiuli, Reference Degiuli2010: 770). Hence, disability is perceived as an assessable element. In addition to disability measures, certain studies did not define disability but used it relative to health and functioning. For example, Romoren’s (Reference Romoren2003: 471) ‘study aimed to examine the illnesses and disabilities and the informal and formal care received by the subjects up to their deaths’.
In quantitative studies, disability does need to be defined to analyse statistical significance. However, it is noteworthy that disability automatically refers to functional limitations. It is either defined as such, or not explained but rather used as a synonym for impairment.
Sociomaterial approaches
Even though fewer than articles conceptualising disability as an individual limitation, certain AS articles engaged with disability studies, particularly the social model of disability that became widely known in the 1990s. However, in the late 2010s, articles started to focus less on the social model and more on broader theoretical frameworks of disability studies.
Rather unexpectedly, articles utilising the social model of disability did not present any critique or discuss it further. The social model was often mentioned as the way disability is understood in the article in question or as a way of understanding disability in general. For example, although the approach had been social throughout the article, Ward et al. (Reference Ward, Vass, Aggarwal, Garfield and Cybyk2008: 646) mentioned the social model in the discussion only: ‘[A]s the social model of disability gradually becomes more influential in thinking about, and the practice of dementia care, a very different framework for interpreting conditions in care homes is emerging’.
In the late 2010s, the social model was mentioned as one of the ways of conceptualisation. For example, Korotchenko and Clarke (Reference Korotchenko and Clarke2016) discussed the social model and its critiques with citations from disability scholars and social gerontologists. Similarly, Labbé et al. (Reference Labbé, Mortenson, Rushton, Demers and Miller2020) considered the understanding of disability and power wheelchairs from a life course perspective, citing relevant literature on ageing and disability and (rehabilitation-oriented) disability studies.
Even though there has been engagement with disability studies in AS, care topics have been discussed rather separately. Two articles discussing care are linked to disability studies (Bond, Reference Bond1999; Rodrigues, Reference Rodrigues2020). For instance, Bond (Reference Bond1999: 565) focuses on dementia and suggests a social model of dementia:
A social model of dementia which adopts the social model of disability … would focus on the way that people with dementia and their informal caregivers interpret their own experiences of living with dementia and the meaning that their situation has for them.
At the beginning of our studied period in the 1990s, social approaches to ageing and disability in AS are mostly related to the social model of disability, whereas subsequent approaches are broader and engage with several theories from various research fields. As research leaned towards interdisciplinary work, research on the ageing–disability nexus did so, as well.
Disability & Society
In DS, some articles discussed disabled older people, whereas some described older persons and disabled people as discriminated against and underrecognised groups. In DS, disability within the intersection was discussed mostly from the viewpoint of societal challenges. In most articles in DS, disability was separated from impairment following the social approaches to disability. Contrary to AS, most articles in DS were qualitative. Moreover, the articles published in DS had minimal engagement with ageing studies and discussions on ageing. Very few had a straightforward focus on ageing. Social perspectives on disability were the dominant approach, whereas individual-functional approaches were fewer.
Sociomaterial approaches
Most of the articles published in DS distinguished impairment from disability. Impairment refers to the physical condition, whereas disability refers to a broader aspect, including social and environmental barriers. Certain articles followed the social model of disability, though other sociomaterial understandings were also found, for example, approaches focusing on the gaps and misfitting of embodiment and context.
The social model of disability was explicitly supported in articles concerning groups with different specific impairments, such as cystic fibrosis (Edwards and Boxall, Reference Edwards and Boxall2010), arthritis (Barlow and Williams, Reference Barlow and Williams1999) and dementia (Boyle, Reference Boyle2008). The social model was argued to be utilised in policies and individual lives. For example, Boyle (Reference Boyle2008: 760) notes that:
[A]pplying the social model of disability to people with dementia is useful in highlighting the extent to which their behaviour is pathologised, in problematising the use of psychiatric drugs to ‘treat’ behaviour and in identifying when such treatment threatens their right to liberty.
The usefulness of the social model of disability is noted above as it is viewed as a possible path to problematising medicalisation and recognising other elements contributing to the emergence of disability as well as claiming rights.
Certain studies discussed disability together with social approaches but did not explicitly adhere to a social model of disability. For example, Sapey et al. (Reference Sapey, Stewart and Donaldson2005) discussed the social model widely but supported a human rights-based approach in the end. Other studies also implicitly adhered to sociomaterial models but did not necessarily mention them (e.g. Gant, Reference Gant1997). For example, Priestley and Rabiee (Reference Priestley and Rabiee2002: 600) mentioned the lack of a social model in older persons’ organisations and distinguished between disability and impairment.
Walker and Walker’s (Reference Walker and Walker1998) article follows a social constructionist approach to disability and old age. They presented a critique of the normalisation principle (making everyday life course as regular as possible for disabled people) and suggested that the social construction of old age hinders the participation of older disabled people:
However, the limitations of the normalisation concept are clearly demonstrated with regard to older people with learning difficulties because the experiences of their reference group in this case older people are themselves often limited and restricted by society’s attitudes. (1998: 130)
In their view, normalisation, in this case, does not bring any improvements to older persons with intellectual disabilities as the reference group of older persons is socially constructed as a dependent and fragile group.
Intersectionality in DS was increasingly noticeable in recent years. Intersectionality – a concept to analyse multiple identities and oppression, developed by Crenshaw (Reference Crenshaw1989) in relation to the intersection of race and sex – has in recent years been taken up alike by disability studies scholars (e.g. Garland Thomson, Reference Garland-Thomson2005; Goodley, Reference Goodley2014; Yoshizaki-Gibbons, Reference Yoshizaki-Gibbons2016) and academics from the ageing field (e.g. Calasanti and King, Reference Calasanti, King, Twigg and Martin2015; Holman and Walker, Reference Holman and Walker2021; Hussein, Reference Hussein2023). Intersectionality as a concept is not attached to either of the dominant conceptual approaches we analyse here, as it can be useful in the nexus of disability and old age regardless of the conceptualisation of disability. However, it was observed only concerning the sociomaterial approaches in our data, and only in DS.
In DS, for example, intersectionality was visible in articles that focused on older women with impairments (Barlow and Williams, Reference Barlow and Williams1999; Proctor, Reference Proctor2001), disability and ageing (Webber et al., Reference Webber, Bowers and McKenzie-Green2010; Thomas and Milligan, Reference Thomas and Milligan2018) and ageing, disability and gender (Vernon, Reference Vernon1999). Many did not mention intersectionality in their analysis but discussed the situation of persons facing challenges due to complex needs or positions (Clare and Cox, Reference Clare and Cox2003; Willoughby, Reference Willoughby2014). For example, Vernon (Reference Vernon1999: 396) criticises disability studies for ignoring multiple identities of disabled persons and suggests that disability scholars should take a more intersectional approach, though the word ‘intersectional’ is not used:
Social model theorists are right to emphasise the pervasiveness of disability. However, there is an underlying assumption that the other experiences of disabled people, such as racism, sexism and heterosexism, are taken care of by other social movements. This would be true, except that disabled people, because of the stigma of being impaired, are also excluded from the movements of race, gender and sexuality. Therefore, it is all the more important that the disabled people’s movement does not exclude or marginalise the experience of disabled people who are a multiple Other.
This article was written over twenty years ago, and intersectional approaches have since increased. For instance, Thomas and Milligan (Reference Thomas and Milligan2018: 124) suggested an intersectional approach to understanding individuals living with dementia:
A variety of social markers, sometimes fluid and shifting, accompanies ascribed identities and self-identities through the life course. The concept of intersectionality can play a useful role here.
In DS, dementia was mostly discussed along with the social approaches to disability, with thorough elaboration on why it would be useful to view dementia from that viewpoint. Most of the dementia-focused articles applied the social model of disability or suggested its application to dementia (Proctor, Reference Proctor2001; Boyle, Reference Boyle2008; Thomas and Milligan, Reference Thomas and Milligan2018; Alden et al., Reference Alden, Wigfield, Kispeter and Karania2019).
Only a few articles in DS used the concept of care, particularly those that adopted the dominant sociomaterial approaches. However, one article addressed the issues of older carers of disabled people (Argyle, Reference Argyle2001). In contrast to the articles discussing care in AS, this study was qualitative with no specific measures for disability. In this article, disability scholars are cited, and the identities of disabled and non-disabled people are discussed due to the overlapping identities of care recipients and carers.
Individual-functional approaches
Certain articles in DS represented a counter-approach discussing disability as an individual limitation. This discourse was similar to the dominant approach in AS, which was also used in DS with large quantitative datasets and statistical analyses. However, this approach was minimal in DS articles as only six articles represented disability as an individual limitation.
One of the articles used large-scale data in studying involuntary retirement (Denton et al., Reference Denton, Plenderleith and Chowhan2013). In this article, disability is understood as impairment:
However, our research has shown that fair or poor health at the time of retirement, severe or a very severe disability and multiple disabilities increase the likelihood of involuntary retirement. (2013: 349)
Another article discussed accessibility using one city as a case study (Levesque, Reference Levesque2020). In the article, the author scrutinised accessible rural transportation services and argued that persons with disabilities may be left in a precarious situation. He used Statistics Canada as a source for disability definition that guides the interpretation of disability as a measurable physical condition:
There are many types of disabilities with the three most common being pain, flexibility and mobility issues. Complicating matters is the fact that two-thirds of persons with disabilities have more than one type of disability. Disability also varies in its severity from mild to very severe. (Levesque, Reference Levesque2020: 3)
As mentioned earlier, DS did not have many care-related articles. Besides Argyle (Reference Argyle2001), one such article was by Webber et al., (Reference Webber, Bowers and McKenzie-Green2010) who studied staff responses to ageing-related health changes in care homes for persons with intellectual disabilities. The article did not explicitly define disability as an individual limitation, but the article resembles those published in AS. This article was distinct from other articles published in DS in that it is gerontologically oriented, using ideas of ageing-in-place and active ageing. Similarly, atypical to DS was naming the staff as ‘care staff’ that ‘care for’ persons with intellectual disabilities; ‘care’ is overall a highly contested concept in disability studies (see, e.g. Kröger, Reference Kröger2009).
Limitations
This study is not without limitations. In this research, we analysed articles from two journals that can offer only a scratch of the surface, as there is much theoretical work done in other journals on both fields, as well. In addition, the journals are both based in the UK, and even though they publish research from around the world, there is a possibility of selection bias. Future research could include systematically all research that has been done on the topic without journal restrictions and elaborate more on the contextual differences in each country in the analysis of disability and ageing policies and practices. Furthermore, future research could review theories rather than focus on concepts as we have done in this study. Many social theories include elements of disability or insight into its conceptualisation, for example, disengagement theory or political economy approach to ageing (Putnam, Reference Putnam2002; Leahy, Reference Leahy2021), but such theories were out of our scope.
Discussion and conclusions
This research aimed to examine how the concept of disability is understood in the nexus of disability and ageing in a disability studies journal (DS) and an ageing-focused journal (AS). We asked what the key conceptual approaches to disability in the intersection are and how the approaches differ between the journals. Studies on the nexus of disability and old age have recognised the different conceptual bases of ageing and disability studies. However, our study is one of the first to review and compare published research articles of these two fields from a conceptual viewpoint.
To answer the research question, we analysed the articles in terms of the two major strands of disability conceptualisation: sociomaterial and individual-functional approaches. Similar to other research (Oldman, Reference Oldman2002; Kelley-Moore, Reference Kelley-Moore, Phillipson and Dannefer2010; Leahy, Reference Leahy2018), our analysis suggests that ageing research is more medically focused than disability studies that are informed by the social approaches to disability. In DS, most of the articles followed a sociomaterial approach explicitly or implicitly, and individual-functional approaches were in the minority with only a few articles employing such an approach. The majority of AS articles, on the other hand, had an individual-functionally oriented approach. However, AS articles showed more communication with disability studies and sociomaterial approaches than DS did with elements of ageing research. It seemed that when the revolutionary idea of the social model of disability emerged in the disability field in the 1990s and 2000s, it trickled into ageing research as well. However, similar cross-fertilisation from ageing research to disability studies was minimal.
The increasing publication of articles on disability and ageing is an important step forward. However, our analysis of the two journals verified that the two research fields of disability studies and ageing research have significantly different dominant approaches and lack proper communication with each other. This may have been contributing to a policy situation where many older disabled people, including those ageing with disabilities as well as those acquiring disabilities in old age, have been falling between existing social protection safety nets (Leahy, Reference Leahy2018). As the number of those who are at the risk of falling between is predicted to increase over the coming years, increasing attention to the intersection of disability and ageing is necessary not only for research, but also for policy (see Era et al., Reference Era, Tiilikainen, Tarvainen, Katsui and Pietilä2020).
The policy implications of the conceptual confusion and lack of communication found in the intersection of disability and ageing are substantial. As the fields of disability and ageing inhibit a different conceptualisation of disability, it matters whether an older disabled person is considered ‘old’ or ‘disabled’ in terms of policies. In many countries, the policies on disability and ageing work in separate siloes (e.g. Jönson and Taghizadeh Larsson, Reference Jönson and Taghizadeh Larsson2009; Leahy, Reference Leahy2018), and may work with different understandings of disability, as concepts translate into policy (Smart, Reference Smart2009; Fisher and Robinson, Reference Fisher, Robinson, Robinson and Fisher2023).
In terms of policy, when the conceptualisation of disability is individual-functional, interventions are accordingly individual – curing or preventing health decline that is considered the cause of disability. Our findings show that related to old age and disability, ageing research inhibits a more individual-functional approach than disability studies. Translating into policy, services for older people respond to disability in such a way that emphasises individual ‘fixes’ to individual problems: for example, prevention of fall-induced impairments so that one could use public transport, and if impairments did happen, one would be provided care. On the other hand, when the conceptualisation is more social, the interventions focus on making society more inclusive and supporting the participation of individuals in society rather than curing or preventing impairments: for example, when a fall does happen and leads to impairment, transport would be made accessible, or transportation services would be provided to ensure participation to society. In our study, this kind of approach was dominant in disability studies but not in ageing studies. This duality of conceptions may cause unequal situations for older disabled people as policy interventions vary according to the field they ‘fall onto’: one person may be considered through the lens of care, whereas another will have their rights to participation enforced, and someone may even be left without necessary services. We suggest that a closer alliance of these approaches could be beneficial in (re)forming ageing and disability policies.
Although the dominant disability policy approach is moving towards the human rights-based approach with the enactment of the UNCRPD, the dominant ageing discourse continues to focus strongly on the care paradigm. In this conjunction, both approaches have a great potential to accommodate the largely neglected needs of older disabled people when constructively combined. We suggest three potentially fruitful ways of combining these two seemingly separate approaches: (1) stressing agency and self-determination of older disabled people, (2) highlighting intersectionality and thereby questioning normality, and (3) integrating the care paradigm into the human rights discourse.
First, older disabled people have not gained much agency either in policymaking or research. This condition may be because they are retired citizens and the grey disability movement is yet to gain strength, being weaker than the general disability movement. Participatory methodology used in disability studies could be employed to interview very old disabled people, which would be an important way forward in research and policymaking. Based on our selective literature review, the co-creation of knowledge and agency in research and policymaking remains significantly scarce though greatly important. Without listening to the experiences and voices of older disabled people, they remain left behind in both spheres.
Second, ableism and ageism are well-recognised forms of discrimination (Devandas-Aguilar, Reference Devandas-Aguilar2019). Both are paramount in the experiences of older disabled people. The intersection of these two forms of discrimination is manifested, for instance when this group is disregarded by both disability services and older people’s services. This situation provides an opportunity to question the assumed normality (Barton, Reference Barton1993) in general and social inequality and injustice in our society in particular (Heikkilä et al., Reference Heikkilä, Katsui and Mustaniemi-Laakso2020). Accordingly, the combination has great potential in furthering our theories in disability studies and ageing research.
Third, the care paradigm and human rights-based approach have a great potential to fill certain gaps in existing, fragmented social protection systems (see Kröger, Reference Kröger2009). There have been efforts to enact a UN Convention on the Rights of Older Persons that would remind the UNCRPD. In 2012, the UN General Assembly adopted a resolution to consider the proposal to enact an international legal instrument on this topic. Learning from the UNCRPD, the human rights discourse has limitations. For instance, love and care are not recognised human rights as such to respect, protect and fulfil (Katsui and Ned, Reference Katsui, Ned, Ned, Rivas Velarde, Singh, Swartz and Soldatić2024). However, they are indispensable parts of human life and particularly important in old age. Therefore, combining the two dominant approaches would create constructive ways to address the diverse needs of older people better than through only one approach.
Based on our selective literature review, we have recognised significant paradigm differences between the two academic fields. These differences contribute to the policy divide, where older disabled people are treated differently depending on whether they are considered ‘old’ or ‘disabled’, regardless of their needs. Constructive dialogue between the fields of disability and ageing would be a way forward in diminishing the divide.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1474746424000058
Acknowledgements
The authors would like to thank the editor and reviewers for their insightful comments. Warm thanks to all our colleagues and others who have commented on our manuscript in conferences and seminars. This work has been conducted as a part of Centre of Excellence in Research on Ageing and Care, funded by the Academy of Finland (CoE AgeCare, 312303 and 352735). Additional funding has been received from Olvi Foundation, Finnish Society for Disability Research and Tukilinja Foundation.
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