Introduction

Questions about a 'disabled' identity are much debated within disability studies (Rhodes et al. 2008; Hutchinson, Roberts and Daly, 2018). As Titchkosky (2003: 4) asserts, living with disability provokes a 'continual wrestling with the question of identity at both practical and theoretical levels' because culture is dynamic - receiving its meaning from people, and simultaneously giving people their meaning. Thus, the "who are we?" question pervades not only the history of disability scholarship but also activism, with disability representing a diverse array of identities and of intersectional experiences (Kelly 2010).

Yet little debate focuses on the identification processes of people who experience disability first in older age. As Priestley (2002,2006) argues, older people with impairments tend not to be regarded as 'disabled' in the same way as children, or younger adults might be. Concern about implications of demographic ageing result in surprisingly few linkages with parallel debates over disability rights and policies amongst policymakers and activists (Priestley 2002). This is so despite the link between growth in disability and global population ageing, especially amongst the 'oldest old' (see United Nations 2019:4). As Lamb (2015: 314) suggests, while older age and disability may have many points of crossover, our desire to claim greater positivity about either category often leads us to reinforce distinctions between them.

The concept of temporary able-bodiedness recognises that disability is dynamic and can occur at any point of the lifespan especially as one ages (Aubrecht, Kelly and Rice 2020). Siebers (2008:5) suggests that able-bodiedness is a 'temporary identity at best'. But most people do not want to consider that life's passage will lead them from ability to disability as the 'prospect is too frightening, the disabled body too disturbing' (Siebers 2008: 59). For Kafer (2013: 14), the most difficult group for disability studies and activism to address are those who do not identify with terms like 'disability' or 'crip', amongst whom she includes people 'with hearing impairments, or low vision, or "bum knees."' She also acknowledges that this group may make up most people with impairments. As well as Siebers (2008), Shakespeare (2014) and Garland-Thomson (2016) are amongst the disability scholars perceiving that 'disability' can be experienced in older age, and Davis (2013:272) suggests that we are yet to learn how older people will redefine disability.

This article is informed by ideas of selfhood as defined by Jenkins (2008) as an ongoing and simultaneous synthesis of (internal) self-definition and the (external) definitions of oneself offered by others. This involves ideas of the internal-external dialectic of identification as the process whereby all identities – individual and collective – are constructed (Jenkins 2008: 40). Amongst the contributions to debates in disability studies about identity, Siebers ([2013] 2017:119) asserted that disability identity is based on social experiences that include (on the negative side) 'a shared encounter with oppression, discrimination, and medicalization' and (on the positive) 'a shared knowledge of survival strategies, healthcare policy, and environmental conditions'. The articulation of the concept of complex embodiment from Siebers can be seen as addressing the idea of identity without giving in to essentialism or completely doing away with collective identity (see Evans 2017). The approach to disability identity adopted in this article, which is discussed again below, is consistent with this approach from Siebers.

But little is known about experiences of identification with disability when impairment is first encountered towards the end of life or, indeed, about the implications for processes of identification of greater numbers of people ageing with long-standing experiences of disability. The fields of ageing studies and disability studies have not been 'in regular conversation' (Lamb, 2015: 315). Thus, experiences of disability in later life have yet to significantly influence disability thought and activism. Critical disability studies have yet to significantly engage with what disability experienced in older age illuminates about culture and with what the implications are of disability becoming a more widespread phenomenon due to population ageing.

This article explores the issue of disability identification in older age, drawing on findings from a qualitative study carried out with disabled older people in Ireland experiencing physical or sensory disability (for more details see Leahy 2021). The study included participants first experiencing disability in older age, and I focus in this article on the identification processes of this group. I argue that the issue of a disability identity in older age is more complex and fluid than has heretofore been assumed. The article points to the role of dominant discourses and policies on ageing in constructing (or not) a 'disability' identity in older age as well as the role of separate policy/service frameworks and separate approaches to activism on ageing and on disability. It argues for greater linkages between the fields of ageing and of disability in scholarship and advocacy.

Before presenting and discussing the findings of the study, I begin by setting up the conceptual framework for the discussion of identification within disability studies, drawing especially on the approach to identity articulated by Siebers (2008; [2013] 2017). I go on to discuss influences on identification in older age from dominant discourses of ageing and policy frameworks on ageing. I then consider the consequences of separate conceptualisations of disability and separate theoretical approaches to disability and ageing, engaging with areas of overlap in critical literature drawn from both fields of scholarship. I outline the study's methods before presenting its findings. In the discussion section, I consider how a shared basis for a disability identity in oppression points to the possibility of identification with disability no matter when it is first experienced across the lifespan, which in turn offers potential to make the issue of ableism much more widely understood and resisted. The article finishes by considering some implications for scholarship and activism.

Identification: Disability and Ageing

The rather stable and fixed ideas about disability identity articulated in the context of the social model of disability have given way to much more contextual and dynamic understandings. So, for Oliver (1996: 5) there were three elements to a disability identity: presence of impairment, experiencing externally imposed restrictions, and self-identification. But ideas have moved on from this somewhat decontextualized understanding associated with membership of a shared collective (Watson 2002: 513). Post-modernist thinking makes construction of a shared political vision more challenging (see Davis 2013). From this perspective, identity is constructed in relations of discourse and power, and ideas of disabled and non-disabled identity serve only to strengthen essentialist arguments. Identity is 'out of fashion' as a category in critical or cultural theory (Siebers 2008: 11).

Furthermore, disability and identity can at once be a positive and negative experience and coupled with other issues (like gender and social class) disability often becomes part of a milieu of identity issues (Johnstone 2004). Empirical research suggests that many people experiencing impairment do not identify as 'disabled' or engage with disability activism (Shakespeare and Watson 2002; Riddell and Watson 2003). Watson's study (2002) found that disabled participants did not want to be seen as 'disabled', but rather identified as a 'normal' person who happens to have an impairment among many other personal attributes. Thus, people often emphasise what they have in common with nondisabled people, seeking inclusion and equal status, not separation (Shakespeare 2014). It is interesting that Watson (2002: 513) nonetheless acknowledges that the notion of a shared identity has played a crucial role in the development of disability activism and is hopeful that it 'will continue to be a powerful and creative force'.

Rhodes et al (2008) characterise the issue of identification as disabled as fluid, negotiable and contingent and as variously construed in academic, political and popular discourse. In common with other critical scholars, Titchkosky (2003) emphasises what dis/ability tells us about culture, positioning disability as an arbitrary and shifting category. Disability, for Titchkosky (2003: 231), can be an identity 'formed on the margins of mainstream life' and claiming disability makes it possible to insert into the world alternative ways of being and of knowing. As Kelly (2010) highlights, Titchkosky does not do away with the concept of collective identity. Recounting a meeting between herself and her partner (who is blind) and an older woman who is losing her sight, she also acknowledges a particular and 'real' lived experience of being blind. Titchkosky (2003) also suggests that it is upon a shared experience of oppression that a politics of disablement has been grounded.

The theory of complex embodiment from Siebers (2008; 2013) seeks to disrupt overly social constructionist interpretations of disability while reinforcing the need for identity politics (see Evans, 2017). Siebers (2008:25) suggests that the spectrum of human variation (including variation within an individual's lifespan) needs to be considered in tandem with social forces affecting disability. He argues for a disability identity, not based on natural or biological categories, but on an epistemology – 'a new knowledge about, and understanding of, what it means to be 'disabled'' (Siebers [2013]2017:120). As Evans (2017) argues, understanding the experience of disability as complex embodiment centres the individual, as well as intersectional experience, while exposing alignments between one's experience and those of other disabled people. This can be seen as an attempt to deal with the issue of identity without giving in to essentialism or abandoning collective identity. The approach to disability identity adopted in this article is consistent with this approach from Siebers.

Identity has been a strong political force since the 1930s even if most disabled people do not identify themselves solely as disabled (Johnstone, 2004). It is well recognised that having a group identified as 'disabled' provides a basis to mobilise politically (Vehmas and Watson 2014), and, even for Davis (2013:263), 'there is a strategic kind of identity politics.' Crucially, for the arguments made in this article, Siebers (2008:11) suggests that claiming disability is both a political act and a practice that improves quality of life (see Wendell 1996:27 also). Shakespeare (2006, 2013, 2014), who famously critiqued the U.K.'s 'strong' social model, acknowledges that the social oppression approach of the traditional social model remains liberating for many disabled people. Garland-Thompson (2014; 2016) asserts the importance of access, identity and community for disabled people, suggesting that to do otherwise is to ignore how people who identify as disabled, or are identified as disabled, are excluded from life-sustaining resources. But the liberating aspects of developing a disability identity are not in the main claimed by people first experiencing disability in older age.

The context within which interpretations are made (including conceptual frameworks and relationships of power) affect whether people accept or resist the label 'disabled' as a master status, or as an aspect of their identity when imposed by others, or choose to adopt it for themselves (Rhodes et al, 2008). Age, amongst a range of other factors like gender, class, and ethnicity, are all likely to be influential (Rhodes et al, 2008). While intersectional understandings of disability and other categories such as race and gender are growing (see, for example, Erevelles and Minear 2010; Bê 2012; Nishida 2016), there is not much focus on intersections of age and disability (for an exception, see Hamraie 2015). In fact, intersectionality remains an uncommon approach to ageing (Calasanti, 2019). Thus, intersectional approaches have yet to contribute greatly to exploring intersections of age and disability.

An early age of disability onset was associated with affirmation of personal disability identity and with positive notions of communal integration amongst activists (Hahn and Belt 2004). People first experiencing disability in later-life are thought not to identify with a disability identity because of perceiving their functioning as 'normal' for their age and because of a lifetime's identification as non-disabled (Oldman 2002; McGrath et al. 2017). Studies in gerontology suggest that when classified as disabled (based on activity limitations), older people do not always identify as 'disabled' (Kelley-Moore et al, 2006; Darling and Heckert 2010). Older disabled people were found to experience exclusion but also to lack access to opportunities for learning about activism (Darling and Heckert 2010). Likewise, people categorised as 'frail' tended not to identify as such (Grenier 2006; Warmoth et al. 2016) and felt that being considered 'frail' could mean being excluded by others (Warmoth et al. 2016).

But discourses on ageing, policy prescriptions and conceptual models that inform how disability is understood are all relevant to processes of identification. Dominant discourses of ageing are framed in narrow and binary ways, either as a decline narrative (where older age is seen primarily as a time of dependence and impending death) or through discourses of 'positive' or 'successful' ageing (Sandberg 2013). 'Positive' ageing discourses are traced to the development of the 'successful' ageing concept from Rowe and Kahn (1997:433) who defined it as encompassing avoidance of disease and disability, maintenance of high physical and cognitive function, and sustained engagement in social and productive activities. In recent decades, adopting a positive identity of ageing can mean distancing oneself from a disability identity for as long as possible (Priestley 2006; Pack et al. 2019). 'Successful' ageing can also be expressed in 'positive', 'active' 'healthy' or 'productive' forms. The term 'positive' ageing is used here to encompass all of them.

Positive ageing discourses, which have proliferated in Western nations, have become interpretive resources that shape how people growing older think about themselves, their bodies and the bodies of others in relation to the process of ageing (Estes, Biggs, and Phillipson 2003; Pack et al. 2019). They can construct the experience of disability in older age as a personal failure (McGrath et al. 2016; Kahana and Kahana 2017).

Typically, social care approaches to ageing are based on a narrow, medical model (Monahan and Wolf, 2014) and 'positive' ageing approaches have become embedded within overarching policies on ageing. Aiming to delay disability and chronic illness to improve population health, policy-frameworks promote 'positive' ageing and a self-managed approach to health (see World Health Organization 2002; 2015). Public policy prescriptions help shape membership categories that affect personal identity and define 'the parameters of legitimate ageing' (Estes et al. 2003:4; Hendricks 2010). Thus, international and national public policies on ageing are informed by understandings of 'positive' ageing as incompatible with ill-health or impairment and they attempt to prescribe what it is to 'age well and responsibly' (Estes et al. 2003: 4,67).

The separation of policy frameworks and service models for disabled people and older people in many countries (Jönson and Larsson 2009; Leahy 2018) is also relevant to identification processes. This is because they tend to underscore difference between people with different timings of disability onset and to suggest that people are either disabled or older, not both (Bigby, 2008; Kelley-Moore, 2010:104). Representative groups of older people and disabled people also tend to remain separate, with representatives of older people often focusing on positive (or active) ageing and both movements distancing themselves from negative imagery of deep older age (Priestley 2002:368-9; 2003;2006).

A broad range of critical gerontologists critique how dominant discourses of ageing and policy prescriptions occur within idealised notions of independent adulthood and prevailing concepts of autonomy and independence and for their alignment with the central features of neoliberalism (see Baars 2010; Sandberg 2013; Lamb 2014; Holstein 2015; Pack et al. 2019). But little scholarship acknowledges how this means that 'positive' ageing is also squarely within what Siebers (2008:7) terms an ideology of ability, or an ableist cultural imaginary associated by Goodley et al. (2019: 981-6) with individualistic, psychological or neoliberal definitions of 'ability' and with self-sufficiency, autonomy and independence. (For an exception, see Sandberg and Marshall (2017), discussed below). Thus, influential discourses of ageing promote the ableist norms that are widely critiqued within disability studies, characterised, for example, by McRuer and Wilkerson (2003:8) as involving 'perfect bodies and minds, which construes goodness in terms of health, constancy, energy, wholeness, and strength at the expense of actual bodies that do not conform to these specifications'. But, arguably, lack of collaboration between gerontology and disability studies and their feminist subfields has limited opportunities for intersectional critiques of 'positive' ageing (Gibbons 2016: 71).

Thus, the role of ableist ideologies in the construction of discourse on ageing, of public policies and, consequently, of identities in older age is underappreciated. It is, however, part of the backdrop to lack of identification as 'disabled' amongst people experiencing disability with ageing discussed in this article and to moments of tension that arose for participants in the present study from the interplay of bodily change over time and investment in ableist, 'positive' ageing prescriptions. How 'disability' and 'impairment' are understood and theorised within approaches to ageing are also influential and are discussed next.

Separate Conceptualisations and Theorising of Disability

It is also relevant to processes of identification in older age that the fields of disability and ageing differ fundamentally in how the concept of disability is understood. Whichever definition or model of disability informs approaches within disability studies and activism – minority group, social, social relational, cultural, or human rights - they all reject a view of disability as the sole result of individual differences or biology. Instead 'disability' is socially constructed and dependent on a range of contextual factors that include the cultural, social, economic and political. It goes without saying that this understanding is fundamental to approaches to theorising and activism on disability. But the different, sometimes conflicting, definitions of disability recognised in disability studies are largely absent in discussions of ageing, where narrow, medicalised approaches still dominate how disability is understood and how policies are framed (see Oldman 2002; Putnam 2002; Monahan and Wolf 2014).

Thus, much literature on ageing engages with 'disability' as an 'undesirable condition' to be 'limited in scope and compressed in time' (Kahana and Kahana 2017:5) and 'disability' still tends to be apprehended as largely an individual, medicalised problem, an interpretation that informs even social science approaches. For example, countless articles on ageing in the social science and humanities use 'frailty' (usually defined in narrow physical/medical terms) as a taken-for-granted classification or reference point (Grenier 2019). The sociological concept of the 'fourth age' is also still used. The 'third age' is conceived of as a time of freedom, characterised by health, personal growth and active engagement; the 'fourth age' as a time of decline, disengagement and death (Laslett [1989]1996; see Lloyd, 2015). Thus, strongly influenced by medicalised interpretations, dominant approaches within scholarship on ageing do not do justice to the issues involved in impairment and disability experiences in older age at an individual or societal level. They also fail to provide a basis for collective-identity formation for people experiencing disability first in older age. But, as Pickard (2014) suggests, no natural objects, including older bodies, exist in separation from social relations.

There are examples and strands of scholarship that engage with ageing through a disability lens or that apply concepts from critical disability studies to the experience of disability in later life or to discourses of ageing (see Oldman, 2002; Morell 2003; Gibbons 2016; McGrath et al. 2017; Sandberg and Marshall 2017, Leahy 2021). Writing as critical gerontologists, Sandberg and Marshall (2017:8) draw on feminist, queer and crip studies in the work of Kafer and others to analyse the ableism that informs 'positive' ageing discourses, which depends on the spectre of its unsuccessful others—those who are 'too queer, too disabled, too demented or too poor to reap its rewards'. Notably, Gibbons (2016) adapts McRuer's (2006) concept of compulsory able-bodiedness to characterise the successful (or positive) ageing approach as 'compulsory-youthfulness', involving ableism and ageism in reinforcing youthfulness and able-bodiedness as ideals.

These approaches point to scope for conversations by critical scholars across traditional boundaries of scholarship in gerontology and disability. As Aubrecht et al. (2020: 5) argue, interfaces between embodiments, environments, social and political economies, and cultural messaging are 'precisely the places in which disability and aging are created and experienced'. Yoshizaki-Gibbons (2019) calls for the 'greying' of critical disability studies by which she means that critical disability studies could develop and grow by exploring intersections between ageing and disability.

Thus, although it may be changing, disability studies activists and scholars have been slow to make connections between forms of discrimination associated with being older and being disabled (Thomas and Milligan 2018) and most critical approaches still focus either on disability or ageing (Grenier, Griffin and McGrath 2016). Furthermore, approaches associated with the social model of disability are rarely explicitly extended to people who first experience disability with ageing, and perhaps not even to disabled people who grow old (Lamb 2015: 314). As Chivers (2020) argues, there is much less scholarship on ageing with disability than one would expect. Thus, the 'emancipatory force' that social model approaches initiated within disability scholarship and activism (Tregaskis 2002: 457) has for the most part not been applied to disability experienced in older age.

However, somewhat relatedly, debate is growing as to whether dementia should be considered 'disability' (see Aubrecht and Keefe 2016; Thomas and Milligan 2018; Shakespeare, Zeilig, and Mittler 2019). Shakespeare et al. (2019) hypothesize that seeing dementia as disability could place people with dementia as self-advocates, at the centre of their own stories, and help provide an enabling identity. But dementia still 'remains trapped within the dominant medical discourse' (Shakespeare et al. 2019: 1079). I suggest that the same is true of the experience of a range of impairments in older age, which also tend to still be conceived of solely within a medical or personal tragedy model. However, as Lamb (2015) argues, while thinking about age and disability together is only beginning, it is potentially fertile ground.

The foregoing represents the background to this study. I next outline its methods before presenting and discussing its findings.

Methods

The data discussed here were generated from a constructivist grounded theory study (Charmaz, 2014). The study had a number of aspects to it: it included interviews with 42 older people experiencing disability who had experienced different timings of impairment onset, and also interviews with policy makers and service providers on ageing and on disability. This article focuses on 24 of the older participants, and identification processes amongst them. This group had an age range of 65-88; half were male, the other half female. These participants had started to experience disability first with ageing, by which I mean they first experienced disability in or after mid-life (that is, from age 45 on). Most had experienced disability onset when they were aged in their 60s or later.

The study was qualitative, using a grounded theory method (Strauss and Corbin 1998; Charmaz 2006, 2014), using an in-depth, largely unstructured biographical narrative interview format (Wengraf, 2001; Elliott, 2005). I took a constructivist approach that assumes that researchers are engaged in an interpretive portrayal of the studied world (Charmaz 2014). The research progressed through the five steps outlined by Charmaz (2014:15) as constituting a grounded theory study: simultaneous/iterative data collection and analysis, analysis of actions and processes, comparative methods, developing conceptual categories, and inducting abstract categories through systematic analysis. Following coding and pursuing constant comparison, I identified categories and the relationships between categories.

Following largely unstructured interviews, I added disability categorisation questions adapted from the Irish Census of population, which reflect international approaches to the framing of disability census/surveys. I did this to situate the qualitative data and also because I did not consider it feasible to use self-identification as 'disabled' in part because people first experiencing disability with ageing do not always identify as disabled (as discussed already). Narrative interviews enabled exploration of the meanings made of impairment onset and using the Census questions allowed participants to self-report impairments/conditions and activity and participation restrictions and barriers. (For more information on the study and its methods see Leahy 2021).

Most participants were recruited through disability organisations or organisations of older people that included day centres and also organisations focusing on social or leisure pursuits. These organisations acted as gatekeepers and were sent details about the study and the recruitment criteria. Recruitment sought people experiencing physical or sensory impairment but was not otherwise based on type of impairment, seeking to avoid a medical model framing that stresses diagnostic categories. However, participants' narratives and answers to census questions referred to a range of diagnoses, including stroke, arthritis, head trauma, progressive conditions, and macular degeneration (again focusing on those experiencing disability with ageing).

Participants were living in their own homes in Ireland in cities, towns, villages and rural areas. They came from a wide range of socio-economic backgrounds. However, the experiences discussed here reflect a largely white experience - only one participant in the study was a person of colour. They were all living in Ireland and thus reflect perspectives drawn from the global north.

Each interviewee was provided in advance with information about the study and its purpose and they gave informed consent in advance. I explained the procedure for each interview and participant rights in advance, such as the right to withdraw consent at any time. Each interview was audio recorded with consent and transcribed verbatim. I obtained ethical clearance from the relevant Maynooth University Ethics committee. All names used are pseudonyms.

Findings

This study explored meanings made of experiences of disability and disablement including constructions (or absence of constructions) of a disability identity. Quite a fluid and complex picture emerged as to identification. This is discussed here by reference to three categories identified in the data that were interlinked and at times overlapping: rejecting disability as personal identity but also rejecting being othered; experiencing injustice and moving towards identifying as disabled; identification and greater integration through encounters with disabled people and disability activism.

The study suggests that participants first experiencing impairment with ageing do not readily identify with 'disability', which is consistent with prior studies and many prior assumptions. They also tend to link or conflate ideas of becoming 'old' with impairment onset. However, for some participants, disability identity can be said to be developing in later life in response to experiences of oppression. Still others did identify as disabled or with disability activism. Contact with other people experiencing disability or with disability activism could be experienced as supportive and empowering and could foster identification as disabled. The findings point to the role of policy frameworks and activism, which are separate on disability and on ageing, as well as to the role of dominant, binary discourses of ageing in identification processes. They also point to the possibility of developing greater identification with disability amongst people first experiencing disability with ageing.

Rejecting Disability as Personal Identity but also Rejecting Being Othered

Participants, who first experienced impairment as they aged, did not typically identify as 'disabled' and to that extent the findings are consistent with assumptions about this group and with studies cited already (see above). Thus, though it varied, people experiencing disability first with ageing tended not to use the terms 'disabled' or 'disability' of themselves – and sometimes spoke instead of being 'limited' or 'restricted'. They could also resist use of the word 'disabled' about them, as they tended to associate that with an unwelcome categorisation or with lack of ability, whereas they preferred to focus on what they could still do. For example, Paul (aged 69) said that to describe himself as 'disabled' would be 'pigeon-holing', stressing instead how he had adapted and learned to get on with activities. Several said they didn't think of themselves 'disabled' because they saw their lives as 'normal' or part of the mainstream. For example, Timmy (aged 78) said:

I don't think of myself as disabled. I know I have a disability, but I look upon myself as being part of the general population.

Accounts of impairment onset often focused on starting to use mobility aids or other appliances. Some said that they had resisted using them to begin with. This was often explained as reluctance to be seen as 'old'. For example, Stephen (aged 88) said that using a walker/rollator hurts people's 'pride' – 'they don't want to admit that they are old'. Appliances made one 'old' (see also Morell, 2003:73). This tends to support the argument of Siebers (2008: 6) and others that it is as if disability operates as 'an othering other'. Thus, there was a conflation by participants of impairment onset and being 'old' and, for the most part, a rejection of both labels and an assertion that lives were 'normal'. Like the (younger) disabled adults in Watson's (2002) study, impairment was not dismissed but difference was not internalised. In many ways, participants in the present study are not that different to many disabled people who do not identify solely with their impairment, and who (similar to non-disabled people) identify themselves through multiple descriptors (Johnstone 2004).

One participant, Joan (aged 86), suggested that one of the biggest changes of recent years was her consciousness of others' perceptions of her:

…as an old disabled person. I feel conscious, very conscious, of that.

She also recounted feeling rejection, hurt and anger on an occasion when a relative had reacted negatively ('oh no, no, no, no, no') to her use of a walking stick. The biggest change of recent years as she experienced it, had not arisen from bodily impairment – though Joan described her body as painful and limiting - but from how others consigned her to a discredited category 'as an old disabled person'. She perceived conflict between how she experienced herself and how others saw her and said that she did not wish to be defined either as old or disabled: 'Don't define me by my disability or don't define me by age'.

Thus, participants often perceived that using aids or appliances meant that there was a gap between how they saw themselves and how others saw them. For example, Joan characterised starting to use a walker/rollator as becoming 'other':

I know that it [rollator] differentiates me from other people. Because I remember going on a pilgrimage to Lourdes one time and there was one lady with a walker. And I saw her as 'other'. And now I am the 'other' myself.

However, she added:

It gradually began to feel quite natural though initially I hated having to use it [rollator]….And it's great, a great help and I can walk as fast as anyone else when I have it – almost.

Her initial reluctance to using a rollator is consistent with awareness of a change in social status – crossing boundaries of identity (see Grenier et al, 2016:14) arising from participation in a culture that, as Titchkosky (2003: 236) says, 'organizes the lives of disabled people in a devalued way'. Thus, participants' experiences are shaped by othering discourses in which disability is understood as a diminished state or as deficit (Campbell, 2001; Loja et al, 2013: 198). Given that understandings of disability in society generally are linked to the medical, individual model, it is not surprising that participants first experiencing disability with ageing often lacked resources to understand impairment experiences in other terms. Indeed, this is consistent with suggestions that people experiencing disability in (earlier) adulthood may be resistant to adopting a disability identity due to previous socialisation towards the personal tragedy perspective (see Hutchinson et al. 2018). However, the link to the individual or medical is likely heightened in perceptions when ageing and disability coincide, making it, as Lamb (2015: 317) says, 'doubly difficult to see beyond the individual-body-as-problem'.

Sometimes the interpretations of participants were in tension with 'positive' ageing discourses and prescriptions. For example, health changes resulting in impairment onset in her 80s was experienced by Annette (aged 84) as life-changing: 'the whole bottom fell out of my world…..and the shock of that nearly killed me'. She attributed this to her prior belief that 'age is only a number':

…..age is only a number, and I always had that outlook in life, age is nothing, it is how you view yourself that counts in the end.

One of the key consequences for Annette was loss of a role in her local older people's centre, where she used to be 'the main dancer'. Now she said: 'I can't give it my everything'. The tensions involved are evident at another point when Annette said that impairment onset was tantamount to sudden onset of older age:

I had to give in and admit I am getting old [laughs].

Investment in the psychological resources associated with positive ageing discourses (see Katz and Calasanti 2015; Timonen 2016) provide few interpretive resources to understand bodily change as anything other than a signal of 'impending old age and failure' (Pack et al. 2019: 2100) and leave little space within which to meaningfully articulate experiences of ageing and disability (Grenier et al. 2016:18). The way these discourses link able-bodiedness with activity and participation also elides the desire that many participants in this study had to go on with life and with activities they enjoyed, and sometimes to take up new ones. Indeed, a sense of time left being limited could be a spur for participants to fulfill ambitions. Thus, participants' accounts highlight the absence of discourses or models of later life that validate living with disability. They also underline the need to reframe ideas about disability and ageing.

Several participants moved beyond initial negative reactions to impairment onset or to use of appliances – even if they did not articulate these as processes of becoming 'disabled' or of adopting a disability identity. For Joan, it had become 'natural' to use a rollator. Some said they enjoyed using mobility scooters, because that made it possible to get out alone. For Timmy, it was possible to 'do so much without hearing'. He said:

Like, hearing is only a tiny part of our lives. I know it's an important part but we can do so much without hearing.

Thus, initial resistance to impairment onset or (especially) to using aids or appliances could be followed by acceptance and enjoyment, because they enabled participants to act in the world and conferred choice and a sense of independence. Self-identity was not about difference, but about what participants could still do, something consistent with the findings of Watson's (2002) study with (younger) disabled adults. Participants were not defined by bodies or impairment, or by use of appliances. In that respect, they resisted an equation of disability with loss and lack. This means that they had had to confront ideas of disability as deficit (often in their own thinking and on the part of others), and, ultimately, they resisted ableist norms by adapting their interpretations and behaviours, even coming to enjoy using appliances that they knew marked them as old, disabled and discredited in the eyes of others.

Experiencing Injustice and Moving Towards Identifying as Disabled

Participants could associate impairment onset, or starting to use aids or appliances, with the embarrassment of others, including other family members, and with exclusion within community groups. They could also resist these processes. Given how impairment and functional limitations in older age have been constructed as something of a generational norm, if not a defining characteristic of becoming old (Priestley 2006: 86), this is something of a surprising finding. Despite not being considered 'disabled' in general perception and often in their own accounts, participants suffered disablement as 'the outcome of the withholding of social and cultural recognition' (see Watson 2003: 50). They resisted disablism and, in responding, some also seemed to have developed an identification with 'disability'.

For example, Carmel (aged 69) felt excluded from outings by an active older group because she used a wheelchair and attributed this to an unspoken prejudice on the part of those who run the organisation:

There are times that I certainly feel disabled, like when you can't go on the bus when there is a group going to a shopping centre and you can't go….That does make me feel bad…It is not a problem with the bus, it is only a problem with the organisers. They think I am disabled. ……It is not said in so many words but there is no other reason why I can't go.

Even if the impaired body was not central to Carmel's concept of identity, using a wheelchair resulted in exclusion from a group of age peers. As is the experience of disabled people generally, her identity merges with her wheelchair in the minds of others and disability limits her participation because others 'do not welcome her presence sufficiently' (Siebers [2013] 2017: 118). She 'feels disabled' on these occasions – in other words, being disabled is not a fixed condition of impairment but something she experiences when she is excluded. Carmel had challenged the organisers of the group, arguing that she could wheel herself. She also talked about not being able to get out of her house without help, saying:

But that doesn't really have anything to do with my age. It has to do with my disability or immobility or call it what you like.

Thus, she positioned herself within the category 'disabled' rather than a chronological categorisation as 'older'. She can also be said to be developing a disability consciousness.

The experience of Seamus (aged 78) also illustrates a change in consciousness through experiencing disabling social relations – he said that he feared being left out of social situations when he started to use hearing aids. He then experienced exclusion due to the reactions of others when, for example, his local film club rejected his request to use sub-titles. He went on to express himself in terms of the goals of Deaf/disability activism:

I want more sub-titling on TV, I want sub-titling in the cinema.

Thus, some participants in responding to disablism expressed resistance and can be said to be in the process of negotiating (or having negotiated) a disability identity, something consistent with experiences amongst disabled people more generally (see Stephens 2011; Hutchinson et al. 2018).

Others (like Joan, discussed already) experienced and resisted marginalisation or othering within family or friendship groups. As George (aged 76) explained it, friends and family were 'embarrassed' when he visited using a rollator following disability onset in his 50s and they would put his walker/rollator out of sight once he sat down leaving him 'stranded'. George felt that a family member was also embarrassed by his use of a rollator or nowadays a wheelchair: 'I suppose she thought it was a slight on her'. Though conscious of this person's embarrassment, George also minimised its impact, saying that it didn't bother him 'to an awful extent,' even though it meant not attending Mass, and even though he regretted that his days were confined to home. At another point he said:

But there are things that I'd like to do but at seventy-six, you might as well start slowing down.

People use available resources to resist the stigmatising tendencies of more powerful groups (Link and Phelan 2001) and images of the lifecourse can cast some actions as appropriate and inappropriate at certain points (Holstein and Gubrium 2000: 186). Thus, by referring to his age, George may be invoking a 'narrative of decline' or 'decline ideology' (Gullette 2004:135) to help deal with the suffering associated with the disablist reactions of others. The reaction of George and other participants can also be seen in terms of internalised oppression or internalised ableism — internalising prejudice or negative stereotypes of what it means to have an impairment, thereby invalidating and restricting oneself or experiencing psycho-emotional disablism (Thomas 2007, 2015; Reeve 2012).

Participants' responses to disablism included hurt, anger or resistance, resembling resistance of disability activists generally (sometimes indirect or unspoken) (see Watson 2003; Loja et al. 2013; Siebers [2013] 2017). For example, George (at another point) explained that he feels 'case-hardened,' which he explained meant that people must take him as he is:

They can take me as I am or forget about me…..Yes. Here I am. That's it.

This statement from George recalls Titchkosky's (2003: 238) emphasis on what disability 'says back and does to the sayings of others'. He is aware of being positioned as devalued by culture and he asserts his worth in the face of it. Thus, while reactions could sometimes be ambivalent and identities were likely to be multiple, participants also resist and 'talk back'. In some ways, participants adjust to a disabled identity (though not always using the term) involving accepting the reality though not the justice of stigma - a process described by Wendell (1996: 26).

While participants sometimes invoked a decline ideology to buffer self-concept when faced with disablism – something that actively limits them – they could also resist perceptions of othering, and both could coexist in the account of same person. Identifying these experiences as resulting from disablism clarifies that the problem lies in the attitudes and behaviours of others and in society – and that the experience of disability in older age is one shaped by social norms and by culture just as is the experience of disability at other points of the lifespan. These findings suggest that disablism is likely to be more widely experienced across the lifespan, and consequently across society, than is often assumed or articulated. Experiences of this group should, I suggest, be more known and mainstream to disability studies and activism. The findings also signal potential for a more widespread development of identification with disability in older age.

Identification and Greater Integration through Encounters with Disabled People and Activism

Some participants first experiencing disability with ageing did, however, identify as disabled or expressed an alignment with disability activism and sometimes they had developed a sense of belonging with other disabled people. This tended to have arisen through engagement with mainstream disability organisations. As Titchkosky (2003: 25) suggests, interaction amongst disabled people can speak about the formation of social identities as disabled people, as well as the construction of the meaning of disability in general.

For example, a lip-reading class could be experienced as a supportive community. Timmy (aged 78) described his lip-reading class (run by an organisation of Deaf people) as 'my new social circle', adding:

They understand me like I understand them.

Part of the background to the findings discussed here relate to the separate public policy and activist approaches that operate in many countries, as discussed already. People experiencing disability after age 65 are likely only to experience a model of care that is strongly medicalised and narrowly focused on basic physical functioning (see Monahan and Wolf 2014) and they often will not have had contact with groups or organisations of disabled people because representative groups tend to be separate. This helps to construct thinking in separate terms about disability and ageing (Leahy 2018).

But several centres that helped with recruitment for this study were operated by organisations representing disabled people that engaged in disability activism. Some included clients (aged over 65) who had experienced impairment after mid-life. One centre (unusually) included members who had first experienced impairment after age 65. In that respect, these centres and the experiences of attendees may have been somewhat unusual – in terms of contact with disability activism and understandings of disability informed by social models. As Thomas (2004:581) suggests, the social model continues to be a 'powerful organising principle, a rallying cry, and a practical tool'. But these experiences also signal potential for greater identification with disability and with disability activism amongst people experiencing impairment later in life.

For example, Phil (aged 74), a wheelchair user since his late 60s, said:

I'm grand. I can get around, do what I like, still the same as when I had legs.

Thus, he did not attach importance to impairment. Instead, he identified his greatest challenges in terms of environmental barriers like undipped footpaths and partially accessible public transport. Talking about not being able to access his local train, he said:

I'd go into town.… Something I'm doing for years I can't do it any more you know. I can't go there. And it's the trains that are at fault, you know. As I've said, the CIE [train company] class us as second-class citizens, they do yea. Like they won't put a man there…It's just that that hurt me, you know, not to be able to go over and get the DART [train] you know. That hurt me….I'm not allowed to go into town to see my family. That's the way I look at it.

Phil engaged in lobbying with other people who like him attend a disability centre to address this. For him inability to access his local train was associated with changes in political processes and cut-backs that reduce disabled people to 'second class citizens' and he demonstrated a disability consciousness as articulated within the classic social model (see Oliver 1996). He located disability squarely within the political – meaning it is implicated in relations of power (Kafer 2013: 9). He can be said to be engaging in a process of political development, characterised by Nishida (2016) as learning and embodying a critical framework that questions and resists the status quo that defines and categorises minority people.

Phil and other attendees of centres run by disability organisations had also developed a sense of belonging. For example, June (aged 82) had joined the same centre as Phil two years previously. She characterised life in her late 70s as having become largely confined to home, which she linked to mobility impairment. But when she joined the disability centre, this changed, and she said that coming to the centre was like coming 'home':

And it has changed my whole life. That's what, two years ago. I come in that door and I am home. I live for it a few times a week…..I wouldn't miss a day unless I really have to.

She had also since engaged in activism in relation to cars illegally parking at her local shopping centre blocking her from accessing the dipped section of the footpath on her mobility scooter. For June, disability, which had been a source of suffering, has also become a source of connection and strength (see Stephens 2011; Garland-Thomson 2014).

As argued already, policy environments shape membership categories that affect identities. Both asserting and resisting collective identification is 'definitively political' (Jenkins, 2008:43) and policies and services can reinforce a disability identity (Grenier et al, 2016). The findings of the present study evidence how identities in older age are fluid, situated and multiple, and how a disability identity can be useful or empowering even if oppression, discrimination or marginalisation is experienced first later in life and even if 'disability' approaches to policy/services are encountered only later in life. These findings also signal how greater identification with disability in older age can occur. This points to the possibility of more common cause being made between older disabled people and disabled people generally, something that is particularly significant at a time of population ageing and older people constituting an ever-greater proportion of disabled people. This is likely to require more links between disability and age activism, which could in turn create greater awareness of how ableist ideologies operate.

Discussion

Although disability in older age tends to be largely subject to medical analysis and individual framing, the findings discussed evidence how culture, as expressed and manifested in a range of contextual factors, actively disabled and limited participants' potential, as is the case with all disabled people. These included disablist social relations and inaccessible physical and home environments. Physical experience is always mediated by the social (Shakespeare 2014) including in older age (Pickard 2014). Dominant discourses of ageing in ableist, 'positive' ageing forms also provided no help with meaningfully articulating experiences of ageing and disability and provided few interpretive resources to understand bodily change as anything other than a signal of decline and a time to 'give in' or withdraw. Even if it is true that some groups and people will be more stigmatised than others (Link and Phelan 2001) and even though participants did not always articulate it in terms of a disability identity, experiences discussed here tend to support the contention of Siebers (2008: 5) that over the lifespan 'other identities will eventually come into contact with some form of disability identity'.

Typically, participants, who were experiencing disability with ageing, did not use the word 'disabled' of themselves, and they associated onset of impairment (or starting to use aids or appliances) with onset of old age – and sometimes as entering a doubly discredited category. But not being considered 'disabled' in general perception and often in their own accounts does not protect them from disablism or from being at the effect of overarching ableist ideologies and norms. Participants sometimes experienced marginalisation or exclusion within families and community groups (including within groups of older people) and they often resisted this in spoken or unspoken ways. Over time they had to confront ideas of disability as deficit (both as they had internalised them and in broader contexts) and they often went on to resist ableist norms despite knowing that they were considered old, disabled and discredited in the eyes of others.

Some experienced disablist exclusion without any sense of support or solidarity from identifying with disability or connecting with other disabled people and this is likely to be a widespread phenomenon when disability is first experienced later in life. But some participants could be said to be developing a disability identity in response to oppression. For several, contact with a mainstream disability organisation and with other disabled people led to a sense of support and belonging and an orientation towards, and involvement in, disability activism.

Part of Priestley's (2006) explanation for the disjuncture between how disability is perceived at different points of the lifespan is that impaired bodies may cease to be 'out of place' in older age. It could be inferred from this that the experience of disabled older people would be one of integration or acceptance in social interactions rather than exclusion or marginalisation. Instead, the findings discussed show how influential discourses intersect and largely promote individual level interpretations and disavowal of the experience of disability no matter how late in life it was first experienced. As the accounts discussed here illustrate, participants find themselves at the juncture of ageism and ableism or of compulsory-youthfulness (Gibbons 2016).

There is research suggesting that people who age with longstanding disability can experience barriers to participation in places targeting seniors (Raymond, Grenier, and Hanley 2014). Findings presented here illustrate that these barriers can also apply to people first experiencing disability with ageing. If a basis for disability identity is a shared experience of oppression or discrimination (Titchkosky 2003; Siebers [2013] 2017), then these findings also point the possibility of identification with disability no matter when it is first experienced across the lifespan. They also point to the possibility of 'disability' providing an empowering and enabling identification for older people experiencing impairment, one that is both more realistic and less divisive than those that currently flow from discourses of ageing and related policy prescriptions.

While it is true that ageing forces engagement with physiology, 'not least because of the ultimate undeniability of death' (Twigg 2004: 63), experiences discussed here also provide support for the position that interpretations by people experiencing disability first with ageing are not all negative. There is much more scope for revealing not only the negative bases for a disability identity in older age (including encounters with oppression and medicalisation) but also the positive ones (including knowledge of survival strategies) that Siebers ([2013] 2017:119) suggested are also central to identification as disabled.

Thus, the discussion suggests that the issue of developing identification as disabled when first experiencing disability in older age is more nuanced and fluid than has been assumed to date and it points to the role of discourse, and of separate approaches to policy and activism (on ageing and on disability) in the development of a disability identity or in the absence of the development of one. The findings underscore how activism, identification and belonging can flow from policy/activist approaches. Riddell and Watson (2003:10) suggest that it is possible for individuals to re-evaluate a previously spurned identity. The findings illustrate how some participants did just that and, even though participants often tended not to identify as 'disabled', identity is clearly always subject to negotiation. While it is true that the complex interaction of factors (biological, social, cultural) within constructions of disability are likely to be experienced differently at different times and in different situations (see Rhodes et al, 2008), these findings point to the possibility of there being commonalities in the experience of people first experiencing disability with ageing and disabled people more generally.

Part of the broader context is that older people and disabled people have been subject to similar discourses of dependency and otherness that distinguish and distance them from the ideals of an independent and autonomous adulthood (Priestley 2006). Thus, in our culture 'aging is shrouded in denial or shame' (Cruikshank 2003:7) and similar underlying fears marginalise or result in distancing from older people and disabled people (Irwin 1999; Sheets 2005). Influential discourses intersect and largely promote individual level interpretations and disavowal of the experience of disability and an able-bodied ideal that devalues disabled or ill people of all ages with both older people and disabled people 'easily devalued' or marginalised (Priestley, 2001:246; Gibbons, 2016:77). Kafer's argument (2012:3) that illness and disability are part of what makes us human and that the value of a future that includes disability goes unrecognised, is perhaps particularly the case when disability is experienced only later in life. This means, I suggest, that there is merit in attempting to challenge social and cultural devaluation of disabled people and older people holistically across the lifespan and for more engagement between the fields of disability and ageing. There may also be more issues in common between representative groups of disabled people and older people than is generally recognised. As Chivers (2020) suggests, while not all older people are disabled, disabled people and older people share social, cultural, and physical positioning that could be resisted better through alliances.

A point to reinforce here is that contact with other disabled people could improve lives and be empowering of participants, as it can be for all disabled people, and acceptance of disability as a positive identity can involve benefitting from 'the knowledge embodied in it' (Siebers 2008: 27; Shakespeare 2014). It can highlight alternatives to the equation of disability with loss and lack (Reeve 2012: 85). Nishida's (2016) study with disability activists suggests that for some, coming to re-imagine disability and disability status was deeply intertwined with a process of embracing other disabled people. But where many other disabled people have often been empowered to mobilise, organise and work for equal citizenship, participants first experiencing disability in later life do not typically have contact either with disability activists or with liberating or empowering interpretations of disability (see also Darling and Heckert 2010) and often only encounter a medical model within older age policies/services. They also negotiate their ageing identities in interaction with dominant binary, ableist discourses and policies of ageing.

Thus, confined within medicalised approaches to public policies, with discourse on ageing and age-activism highly influenced by ideals of 'positive' ageing (or absence of impairment), many people experiencing disability first with ageing are likely to experience disablism without, for the most part, the sense of support or solidarity from identifying with or connecting with other disabled people. They often have yet to move to viewing disability as an experience rather than a loss (Hahn, 1997: 34), a perspective that was found beneficial for people experiencing disability in adulthood in terms of affirming a disability identity and validating full citizenship (see Hutchinson et al. 2018). Therefore, they do not in the main have models that help to move from 'shame to pride' (Garland-Thomson 2016). However, when individualised experiences are asserted, communities of common experience grow (Johnstone 2004). This represents a rationale for engagement with experiences of disability and ageing within and across different fields of scholarship and activism.

Siebers (2008: 81,190) argued that the primary objective for disability studies should be to awaken more political consciousness to the concept of ableism, which, he suggests, has yet to be accepted into general usage. Because of this, it would seem like an appropriate contributing factor would be both to understand experiences of disability and ageing more and to explore whether political ideas of who is encompassed within the category 'disabled' can be expanded to include people who first experience it in older age as well, of course, as people ageing with disability. This could make the ideology of ability much more broadly understood and, hopefully, more broadly resisted.

Conclusions and Implications

The findings discussed represent a challenge to approaches both to ageing and to disability in several ways. They challenge the dominance of bio-medical explanations of disability in older age in gerontology and the ableist assumptions that inform overarching ideologies and policy frameworks on ageing in 'positive' ageing (and cognate) forms defined around an axis of health or able-bodiedness. They also challenge the traditional tendency within disability studies not to engage with experiences of ageing and disability and the tendency not to apply social or cultural models to disability experienced in older age. They suggest that the typical absence of disability identification in older age is shaped by, amongst other things, discourses of ageing, policy prescriptions and medicalised service-frameworks. They support the call from Yoshizaki-Gibbons (2019) for centering older disabled people in emancipatory research and for critical disability studies to engage more with ageing.

Thus, the most obvious implication of the study is the need for more conversations and links between scholarship on ageing and on disability even if those conversations can be fraught (Lamb, 2015). Critical disability studies could usefully contribute to critical gerontology a perspective as to how disability is not all negative, that different ways of being in the world can be sources of satisfaction, creativity, and meaning. Applying a critical or cultural disability lens to the study of ageing would also contribute a valuable focus on how society actively disables and limits the potential of older people experiencing impairment, something that even the social science literature on ageing often engages with through the medicalised lens of 'frailty' or through the reductionist, residual concept of the 'fourth age'. There is potential for critical scholars in disability and ageing to engage more together in analyses of the role that ableist ideologies and disablism play in processes of disablement in older age and of how they intersect with ageism.

Another implication is that critical disability studies, emphasising what disability as a social phenomenon reveals about culture (Titchkosky 2003), has yet to engage fully with what the nexus between disability and ageing illuminates about culture and with what the implications are of disability becoming a more widespread phenomenon linked with population ageing. This lack of engagement contributes to a situation where, though contested by critical gerontologists, the issues involved are largely interpreted through a dominant bio-medical lens.

Feminist perspectives and intersectional approaches represent obvious avenues for crossing boundaries between traditionally separate fields, opening more potential to perceive disability in older age as a political category not an individual pathology or tragedy, as well as explicating how multiple dimensions of inequality (such as gender, class, ethnicity and sexuality) intersect with age. As Berghs et al. (2019:4,5) argue in discussing reductions in the rights and entitlements of disabled people, it may be time to 'think of what unifies' and to welcome 'greater diversity and intersectionality of identities across the life-course'.

This is particularly the case as population ageing means that older people are contributing an ever-greater proportion of people experiencing disability. The findings discussed here point to the possibility of more common cause being made between people who experience disability onset at different points of the lifespan than is often assumed to be the case. While indicating the potential for this, it also suggests some of the challenges involved. However, I suggest that it is worth pursuing greater links between the worlds of disability and of ageing as this has potential to marshal more interest in and more support for issues affecting and oppressing all disabled people, to foster the inclusive societal responses to disability that are long overdue as well as less divisive (and ableist) approaches to ageing.