disability.
2.5 (i) Narratives of institutional lives
Studies of communities with learning disabilities have a long history in social science research. From the late 1960s onwards, Edgerton (1967), Atkinson and Williams (1990), Walmsley (1995), Cooper (1997a) Atkinson et al. (1997), Rolph (1999), Atkinson et al. (2000), Walmsley and Rolph (2006), and Hamilton and Atkinson (2009), considered the lives of people who had moved from institutional settings to community based services, both in Europe and North America. These were primarily small-scale qualitative studies, and predominantly employed individual narrative interviews alongside document review methods (Atkinson et al. 1997; Rolph, 1999; Atkinson et al., 2000; Hamilton and Atkinson, 2009), and photographs and poetry (Atkinson and Williams, 1990). The narratives of people with learning disabilities made
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an important contribution to field, including an insider’s perspective that could be viewed alongside that of professionals.
A pivotal longitudinal study, Edgerton (1967) tracked the move of 48 people from the long-stay institutions in California to life in the community. Edgerton focused on institutional life as experienced by people with learning disabilities; this was an important perspective as, up until this point, their narratives of institutional life were absent from all of the historical accounts. The participants in Edgerton’s study were most often middle-aged adults, but during the latter stages of the study some older participants were interviewed. However, all of the older participants in this study shared a lived experience that was based on institutional living, and consequently, the voices of those older individuals’ who lived with their families were not included in this study.
Across the life-story literature, there were limited reporting on gender issues; however, Atkinson and Williams (1990) identified that the stories were told with a gendered difference. The men in this study were far more comfortable with the chronological life- story approach, whereas the stories told by the women were more about relationships and people. Atkinson et al. (1997) studied the historical accounts of women and a key finding to emerge from this research was the importance of relationships with family and friends, and how these connections helped the women participants to define themselves and to support them in establishing where they belong (Atkinson et al., 1997). Later, when compiling a gendered account of both good and bad times experienced by women with learning disabilities, Atkinson et al. (2000) identified four common themes of unfairness, fighting back, identity and relationships. Another common theme to emerge from the historical narratives was the harrowing abusive experiences that women endured during their years of segregation, and their resilience to such situations (Atkinson et al., 1997; Atkinson et al., 2000; Hamilton and Atkinson,
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2009). Hamilton and Atkinson (2009) found that the narratives of abuse were generally reflective and were told with a sense of acceptance, and it was this latter feeling that enabled the participants to move on with their lives.
The narratives within these life-history studies (Atkinson and Williams, 1990; Atkinson et al. 1997; Rolph, 1999; Atkinson et al., 2000; Hamilton and Atkinson, 2009) introduced the importance of including this population in research, and provided some narratives from older people’s perspective (Atkinson and Williams, 1990; Atkinson et al., 1997) that added to the historical accounts of life in institutional settings provided by professionals. Their stories have provided a valuable insight into the lived experiences of a particular learning disability community that had previously been silent. However, the gendered narratives of the participants, and their individual experiences of ageing remain relatively unexplored. The life stories in the research mentioned generally focus on individual accounts of segregated living in an institution, and the subsequent transition to community living, whilst acknowledging that some of these women are now older, and their stories are told from that position.
2.5 (ii) Mixed gender studies on ageing
Other qualitative and quantitative studies in the USA, Canada, Australia and Europe have interviewed older learning disabled participants as part of their sample to understand the experience of ageing or certain aspects of ageing (Erikson et al., 1989; Salvatori et al. 2003; Thompson, 2002a, 2002b; Buys et al., 2008; Judge et al., 2010; Burke et al., 2014; Kahlin, 2015).
In a number of these studies, individuals with a learning disability were not the only sample group participating in the research, with groups taken from both family members and paid carers (Salvatori et al., 2003; Thompson 2002a 2002b; Bigby and
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Knox, 2009). The interview and survey methods applied in these studies identified that the perception of ageing was different across each of the participant groups (Salvatori et al., 2003; Thompson, 2002a, 2002b; Bigby and Knox, 2009). The themes that emerged from the views of paid staff and relatives were more focused on their concern about the individual’s future in terms of ageing (Salvatori et al. 2003; Thompson 2002a, 2002b) and at times, the needs of a service took precedence over the wishes and aspirations of individuals (Bigby and Knox, 2009). Individuals with a learning disability were more concerned about relationships (Salvatori et al., 2003; Thompson, 2002 a, 2002b; Bigby and Knox, 2009) and other key themes were the value they placed on day-to-day experiences, autonomy and life satisfaction (Salvatori et al., 2003); having a pet, TV and running a home (Thompson 2002 a, 2002b); and keeping active (Bigby and Knox, 2009). Bigby and Knox (2009) and Thompson (2002a, 2002b) found that, although the survey methods adopted in these studies were able to reach out to a larger sample size, the numbers of questionnaires returned by those that had a learning disability were low, and those returned appeared to have been influenced by paid staff or relatives (Thompson, 2002a, 2002b). These studies (Thompson 2002a; Salvatori et al. 2003; Bigby and Knox, 2009) identified the different perceptions of ageing across the sample groups, and highlighted the value of listening to the views of those with a learning disability. However, the data was not analysed or presented as a gendered issue, and any gendered differences or similarities in their findings were not discussed; thus, these remain relatively unexplored.
There has also been other qualitative international research that have studied certain aspects of ageing for example active ageing and retirement, interviewing communities of older people with learning disabilities in a range of institutional and community services (Erikson, 1989; Buys et al., 2008; Judge et al., 2010; Kahlin et al., 2015) and
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an additional quantitative longitudinal study was carried out in Ireland (Burke et al., 2014). The key themes that emerged in an Australian study on active ageing were empowerment; active involvement; maintenance of skills and learning; feeling and being safe; congenial living arrangements; and satisfactory supports and relationships (Buys et al., 2008). On the other hand, a qualitative study on retirement that took place in Scotland (Judge et al., 2010) identified four key themes related to independence: continuity, being active, the importance of the day centre, and continuing to connect with the learning disability community.
In a recent longitudinal study, the self-report section on ageing perception found that good things about getting older were identified by 77% of the respondents with a learning disability (Burke et al., 2014). These were increased activities, increased independence, having wisdom, being able to wind down, and being able to retire. However, ageing concerns were responded to by 25% of the participants, and these related health changes, loss of independence, and death/bereavement. Later, Kahlin et al. (2015), in a phenomenological study about the lived experiences of older individuals with learning disabilities in Sweden, found two major themes. These were ageing as a process of change (bodily functions and health, activity and participation, the supporting environment) and existential aspects of ageing (being old, becoming like others, and death/dying). Kahlin et al. (2015) also found that the transition to old age was not such a major transition for the participants, with the lived experience narrated as a multifaceted experience. Transition has also been discussed by McCarthy (2002), who suggested that the life-cycle changes of mid-life and old age might not be meaningful to this population, as they often do not experience similar transitional points. Many of these studies explored ageing or aspects of ageing from an individual perspective and this provides some valuable insight into the experiences of
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ageing as perceived by the older person themselves. These are different to the perception of significant others (Thompson, 2002a, 2002b). Although both men and women participated in these studies, the research did not explore possible gender similarities or differences in their perceptions of ageing, but took a learning disability population view (Erikson et al., 1989; Thompson 2002a, 2002b; Salvatori et al., 2003; Buys et al., 2008; Judge et al., 2010; Kahlin et al., 2015)
2.5 (iii) Ageing and Women with Learning Disabilities
In a qualitative study McCarthy (2002) studied the experiences of the menopause in a small group of women with learning disabilities, some of whom were over the age of 60. Although the main focus of McCarthy’s research was the women’s experiences of the menopause, a set of generalised questions about ageing was also included in the interview schedule. Emerging from their narratives of ageing were themes of health deterioration, and death and dying. As previously discussed in the critiques of life story research (Ch. 2.5, pp 36-38), the women in McCarthy’s work also shared disturbing narratives of their experiences of past sexual and physical abuse. However, there were some positive narratives as well, with some women sharing their experiences of greater opportunities as they aged, and some of the participants not perceiving themselves to be old.
Recent international work has seen the publication of research that has begun to explore women’s experiences of ageing (LeRoy et al. 2004; Walsh and LeRoy, 2004; Dew et al., 2006; Strnadova and Evans, 2012). One of the first of these studies, LeRoy et al. (2004), carried out a pilot qualitative study that explored ageing with two groups of older women with learning disabilities. The larger sample resided in the USA (twenty) and the other, smaller, sample of participants (nine) lived in Ireland. The
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survey was carried out using a qualitative interview schedule of 103 semi-structured questions that were later utilised in a worldwide study with older women (Walsh and LeRoy, 2004). The interview schedule covered five areas, namely health, wellbeing, economy, personal safety, and social roles. The themes that emerged from the findings of this study suggested that the things that the women valued most were their family, having a pet, being healthy, going to church, and having their own place to live. The resilience of older women with learning disabilities emerged as a central concept in this study, reporting that this was the happiest time of their life. Possible limitations of the Walsh and LeRoy study include the interview schedule, which contained 103 questions, and the prolonged face-to-face interviews, which lasted two to three hours, although the research discussed neither in any detail. Some questions within the schedule required quite a high level of comprehension, and these are discussed later in this chapter when critiquing the interview schedule (p.43). However, the Le Roy et al. (2004) pilot study did contribute to the body of research on ageing, especially with its focus on a gendered female perspective, and helped to shape a larger study critiqued in the next paragraph.
One of the largest studies to explore the individual perspectives of women growing older with learning disabilities was a collaborative effort undertaken across eighteen countries and carried out by separate research teams (Walsh and LeRoy, 2004). A total of 167 women worldwide were interviewed face-to-face using the interview questionnaire that had been piloted in an earlier study, discussed earlier in this chapter (Le Roy et al., 2004). The questionnaire was divided into five categories of questions: wellbeing, health, economic, personal safety, and social roles. The UK based research team interviewed ten women with learning disabilities, and each of these face-to-face interviews lasted between two and three hours. The researchers described this global
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view of ageing as a collection of stories that had been sewn together like a patchwork quilt, and emphasised that it should not be regarded as empirical research. However, there were some consistent themes that emerged from this study, such as the women’s experiences of being removed from their birthplace, and feeling as if they were outsiders in their current residency. The concept of resilience was put forward as a means of understanding how they had overcome difficulties against the odds, and had developed skills of hope, courage and forgiveness that enabled them to have insight into their life and approach older age with dignity.
There were some limitations with the interview schedule, as the language and structure of some of the questions was often very complex, and the face-to-face interviews were prolonged. Booth and Booth (1996) argue that traditional research methods are not always effective when interviewing people with learning disabilities and their involvement requires flexibility and the use of more direct questioning by the researcher. An example of an ambiguous question that was used in the Walsh and Le Roy study is:
“Look down the road in five years, tell me what you see”
Another question used in the interview could also have been difficult for people to comprehend and may have received a variety of responses:
“Are you interested or excited about something?”
The analysis of the interviews with participants’ from across different countries suggested that there were some cultural variables in their responses, and these often related to their perception and experience of ageing. However, the themes of resilience
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and feeling like an outsider ran through all of the narratives of these women, regardless of their cultural reference (Walsh and LeRoy, 2004).
Later Dew et al. (2006) carried out an exploratory study with a group of thirteen older Australian women with learning disabilities. This focused on the women’s perceptions about their experiences of ageing. Interviews were based on the same questionnaire that was used in the global study of older women with disabilities by Walsh and Le Roy, 2004). However, Dew et al. adopted a narrative methodology, and the data was analysed using a comparative analysis technique, which brought an in-depth understanding of the women’s individual experiences of ageing. Nevertheless, there were some limitations to this study, as eight of the participants resided in the same home and this may have influenced the findings. Additionally, although the responses were grounded in their individual experiences of life as older women, Dew et al. had used the interview framework developed by Walsh and LeRoy discussed earlier in this chapter (p. 42-43). The results of the Dew study may have been influenced by cultural differences, as life in Australia might be quite different to life in England; however, it demonstrated how important it was to understand ageing from an individual perspective rather than understanding people’s lives through the voices and opinions of others. The women in this Australian study described themselves as ageing well, and their stories recalled a life that had improved when compared to their past experiences. The women were familiar with the ups and downs of life, and many of them acknowledged that their earlier lives had not been easy; however, the women all had a high degree of connectivity in their local community, and were leading meaningful lives as older women. Dew et al. (2006) found that the women had a largely positive view on their own experiences of ageing. The concept of resilience is suggested as a means to understand the optimism of these women, recognising that
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their families and friends acted as a cushion when life was troubled. The findings produced a number of key messages for policy and service development, namely the importance of community networks, staying healthy, and having the opportunity to access a range of services. Dew et al. demonstrated through their research, the importance of listening to the perspectives of older women with learning disabilities and developing services and support systems based on their needs and aspirations. However, there were some limitations to the study, as some of the shared connections that were expressed may have arisen as a result of the participants’ shared residential experience. Regardless, Dew et al. (2006) provide a valuable an insight into the gendered experience of ageing across different cultures.
There have also been a number of Australian studies carried out by Christine Bigby that have explored a wide range of ageing issues such as, policy, retirement and service provision from a learning disability population perspective (Bigby and Knox, 2009; Bigby, 1997a). In one of these studies, Bigby (1997a) interviewed 62 women with learning disabilities over the age of 55 who had left their family home after the age of 40, and were living in a range of community settings. A mixed quantitative and qualitative method of data analysis was applied within this research, focusing on the transition from living with family to living in a community. Bigby found that most of the women had strong informal networks and had a key person in their lives. Many of the women talked about the importance of being treated as adults once they had left the family home. However, the women participants were vulnerable to decreased mobility with the passing of years, and reduced access to specific learning disability services and house moves as they grew older were associated with a loss of friendships. Those in poor health (n.14) were found to be less likely to have friends or acquaintances within their social network. However, 92% of the women still named at least one family
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member who was still part of their social network. Although the main aim was to understand their transition from family life to a greater level of independence, Bigby’s work contributes to the body of literature that has explored the experiences of older women.
Strnadova and Evans (2012) studied the subjective quality of life in two groups of women with intellectual disabilities living in Australia and the Czech Republic, and this study aimed to gain a greater understanding of their level of self-determination and potential barriers to self-determination. In-depth semi-structured interviews were carried out using an interview protocol based on the Walsh and Le Roy (2004) framework, with a reduced set of questions, and a grounded theory approach was used to analyse the data. The women (n55) were between the age of 40 and 78 in Sydney, and between the age of 40 and 65 in Prague. The dominant theme that emerged from their research data was the perceived lack of control that the women had over their own lives. One of the strategies that the women used to gain control over their lives was through friendship with those that were close to them and that the shared history that they had in common. The perceived lack of self-determination reported by the women contrasts sharply with the increased autonomy that was reported in previous studies of older women with intellectual disabilities living in Australia (Bigby, 1997a; Dew et al., 2006). The differences in experience of autonomy that emerged in these studies could be related to the variance in their living situations; a number of the women in the Strnadova and Evans research were living with their family, and this can sometimes promote a level of dependency (Bigby, 2000). In contrast to this, participants in other studies had all moved from the parental home and were living in more independent living arrangements (Bigby, 1997a; Dew et al., 2006).
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2.5 (iv) Key Messages from the Literature
Despite decades of research on learning disabilities, both from narrative accounts of institutional settings and from studies that actively sought participation of people with learning disabilities as part of the research process (Edgerton, 1967; Atkinson and