Paper short abstract:

Focusing on the data on aging and disability, we will present the findings from 4 focus groups conducted with persons with disability and carers residing in Ugandan refugee settlements. The Africanizing (Schumaker 2001) of the concepts of aging and disability in the Global South will be discussed.

Paper long abstract:

The adoption of the UN Convention on the Rights of People with Disabilities (2006) has reaffirmed the longstanding need for studying disabilities as part of the displacement experience within the humanitarian intellectual discourse. With 12 million displaced persons with disability (UNHCR2022), many of whom are elderly or aging, researching the experiences of said persons and their support structures within refugee settlements is increasingly important. Drawing from a wider exploratory study of the social support infrastructures that exist within Ugandan gazetted refugee settlements for (aging) persons with disability, this paper will present the preliminary findings from four focus groups conducted with persons with disability (2x10-12 members) and carers (2x10-12 members) residing in Ugandan Nakivale and Rwamwanja settlements. With the fieldwork taking place between Feb-June 2024, the learnings from Ugandan gazetted settlements will be presented with an aim [1] to identify possible pathways to commence a dialogue with the relevant policy makers for improvement of the social support infrastructures, and [2] to strengthen the ‘Africanized’ (Schumaker, 2001) conceptualisation of both aging and disability in the Global South.

Paper short abstract:

The research article addresses the gap in gerontology's understanding of how older adults, living with severe functional decline in long-term care, experience and perceive wellbeing. It aims to integrate person-centred care strategies and resources into the conceptual framework of successful ageing.

Paper long abstract:

The onset of old age was previously viewed as a phase linked with disease and disability, and as suggested by the disengagement theory, it was considered a time for detaching from social engagements and activities. More current theories of ageing, like successful ageing, emerged as a counter response to earlier theories, focusing on remaining free of disease and disability, and engagements in social interactions and relationships. However, as anthropologists and critical gerontologists have long argued, Rowe and Kahn’s notion of successful aging is a sociocultural construct that fails to acknowledge the global trend of ageing with extended life expectancy and healthy life years, alongside an increasing prevalence of complex decline and disability. This oversight is evident as individuals receiving institutional care due to severe functional decline are often excluded from research on active and successful aging. The subjective perspectives and experiences, as well as the preconditions for successful aging in long-term care, have been rarely analysed.

With its recent development, the construct of successful aging has been expanded beyond biomedical or psychological models towards a comprehensive model that includes ageing with disability and care needs. This empirical study contributes to the discussion by providing insights into how wellbeing is experienced and perceived by older adults in the context of residential aged care in Australia. Drawing on long-term and in-depth fieldwork and interview data, it aims to understand the multiple ways in which successful aging can be experienced, including the role of person-centred care strategies and resources.

Paper short abstract:

This paper is based on a Ph.D. research study on women who have podoconiosis in the Northern Province of Rwanda. The paper focuses on the connection between temporality, gender, and a disease management intervention for podoconiosis. A woman's life stage determines the impact of the illness.

Paper long abstract:

This paper is based on a Ph.D. research study on women who have podoconiosis in Rwanda. The paper focuses on the connection between temporality, gender, and a disease management intervention for podoconiosis.

Podoconiosis is a Neglected Tropical Disease leading to severe chronic disability affecting social and economic life. In Rwanda, over 6ooo people are affected by podoconiosis. Research points towards women being more than twice as likely to acquire podoconiosis, and podoconiosis disease management interventions being less effective for women. However, the underlying reasons for these findings have not been explored yet. This qualitative study focused on the influence of local circumstances, structural violence, and intersectionality on women’s experiences and engagement with a podoconiosis disease management intervention in the Northern Province of Rwanda. Additionally, the involvement of the women’s families and communities in the care of the illness was investigated.

Vulnerabilities, care, and support received, as well as the impact of podoconiosis differ depending on a woman’s life stage at the point of developing symptoms. Taking part in the intervention seems to reverse and reduce the future impact of the illness on women’s lives depending on the life stage they are in. Families and communities seem to be the most supportive when podoconiosis develops in older age. However, challenges due to podoconiosis get worse at this life stage as many women experience additional age-related health, social, and economic issues. Regularly taking part in the intervention in old age mainly reduces the impact of podoconiosis symptoms and pain.

Paper short abstract:

The elderly have to react and adapt to the new living conditions associated with emerging or worsening disabilities. Our research focused on how the elderly with age-related disabilities react by adopting adaptive strategies, that are basic prerequisite for successful adaptation.

Paper long abstract:

The elderly face psychological, emotional, physical and other lifestyle-related changes. They have to react and adapt to the new living conditions associated with emerging or worsening disabilities. We investigated how the elderly with age-related disabilities respond to new challenges in a qualitative study of home-dwelling seniors and assumed that active and positive adoption of adaptive strategies and patterns is a basic prerequisite for successful adaptation and increases the quality of life.

We examined how the elderly with age-related disabilities adapt in food-related activities such as food choice, shopping, cooking, commensality, and sharing food and food-related experiences.

We focused on food intake as it is one of the most important and crucial components of elderly life activities, essential for fulfilling nutritional and social needs.

In our empirical study, we used a multi-method ethnographic approach involving interviews and observations, allowing us to explore the eating practices of a group of 20 respondents.

We identified specific patterns that may shed light on the interpretation of adaptation patterns focused on maintaining a dignified and independent diet even in the presence of disabilities. We also identified creative approaches in implementing and maintaining of social bonds, and creating alternatives to previous eating patterns to maintain the quality of life.

The results of our research are important for the institutional support of seniors with disabilities and for setting up tools that facilitate disabled seniors' adaptability in negotiating eating patterns in a changing social and cultural context.

Key words: elderly, disability, adaptive strategies, food.

Paper short abstract:

In the presentation, I am portraying two late-life self-help groups - breast cancer support group and prostate cancer support group as forms of challenging social marginalization. In the analysis, I will use the intersectional perspective, through its inter- and intra-categorical complexity.

Paper long abstract:

It is crucial to look into embodied tactics for managing particular health issues in later life, especially when we realize that both older men and women have been categorized as “genderless” or “invisible” in contemporary society, becoming even more important in the context of illnesses affecting such specific and “gendered” areas.

This presentation is a comparative analysis of two self-help groups for women with experience of breast cancer and men after prostate cancer, resulting from the fieldwork carried out in 2019-2022 in a mid-sized city in Poland. The associations differ in gender, but what they have in common is the illness's specific natures and the members' age, as both groups consist of seniors. Age appears to be the factor that particularly influences the peculiar invisibility which manifests differently for each group, thereby enacting dissimilar tactics to overcoming or at least, negotiating it. Both women and men face stereotypes about age femininity and masculinity, and support groups appear to be an important resource for negotiating socially empowered norms, even if both groups understand it differently.

Thus, I am looking at this case from an intersectional perspective, through its inter- and intra-categorical complexity (McCall 2005) that take into account the differences between those groups as well as the multifaceted situation of older men and women after cancer in their ambivalent structural position.

Therefore, the context of my research is three-fold and includes gender, illness, and age, giving insight into narrated personal cancer experiences and performances of how the associations operate in public.

Paper short abstract:

This paper explores age- related disability experiences as en epistemological reflection on examining embodied processes as practices and interactions. These meaning-making processes on how life can be lived at home so that death take place at home create the need for doing medical anthropology.

Paper long abstract:

This paper explores experiences of age-related disability within an epistemological reflection on examining bodily processes as practices and interactions. It further illustrates how experiences near perceptions of the meaning-making process can shape how life can be lived at home, so that death can also occur at home. The paper argues that doing medical anthropology provides insight into embodied practices that are not easy to articulate, and hence ethnographic studies can become relevant in contributing to more successful aging processes, due to the openness in epistemology.

In the health policy context of Norway, home services are promoted through a program called "everyday rehabilitation" that focuses on autonomy and independence ("independent aging"). However, the aging process has no return to increased coping and self-sufficiency, and hence people with age-related disabilities become deprioritized in health care services in their home.

The paper discusses cultural perceptions of ‘age-related disability’ both within the family that can both open and close for support from the health care system, but also close and open for health workers within the health care system.

The paper draws upon the method of auto ethnography, where the author, a qualified nurse and a medical anthropologist, has closely followed the age-related disability process over 13 years, which also enabled her father to die at home. Through storytelling and emphasis on belonging to landscape and places, the embodied experience changes over time and hence a broader understanding of social and material relationships make up what can contribute to successful aging in disability living.

Paper short abstract:

The "successful aging paradigm" has increasingly been criticized for its inherent ableist and heterosexist norms. Queer/crip aging can be a creative force for alternative gerontic worldings, escaping normativities, and thus generating & affirming livable forms of later life and new ways to age well.

Paper long abstract:

Successful aging has become a contemporary obsession (Lamb et al. 2017). Striving to eradicate the declines, vulnerabilities, and dependencies commonly associated with old age through medical technique and individual effort is what defines this vision of aging, which is often represented by the image of an active heterosexual couple and happy intimacies with grandchildren. While appealing to many, this model has increasingly also been criticized for its inherent ableist and heterosexist norms. With my research, I am asking what worldings queer/crip aging can afford amidst prevalent heteronormative and ableist ideals of successful aging. How might aging well become possible when one ages queer/crip? Aging well in this context is “not about achieving successful aging, but about coping with the unrealistic demand and limit such a goal imposes” (Ramirez-Valles 2016, 21). In this light, queer/crip aging can become a creative force because it allows to communicate and circulate alternative ways of being and becoming old. "Failure" then not only becomes critique (cf. Halberstam 2011), but it posits a reinterpretation of what aging well can mean. Queer/crip aging thereby leaks through the logics of successful aging, pointing to the abundance of possible becomings. While queer/crip aging is not immune to the challenges of physical and mental decline in later life, it offers new alternatives instead of resulting in inevitable and totalizing loss, evading normalization and thus generating and affirming livable forms of later life. My paper discusses recent findings from fieldwork in/around geriatric settings in Berlin, Germany, with regards to such possibilities.

Paper short abstract:

How do older women ageing with disabilities navigate sexual and reproductive health care? This paper examines six narratives of women aged 50 years and older with disabilities and analyzes their experiences navigating sexual and reproductive health care services.

Paper long abstract:

How do older women ageing with disabilities navigate sexual and reproductive health care? Sexual and reproductive health research is predominantly focused on the non-disabled reproductive aged population (15-49 years), rendering women aged 50 years and older invisible and those ageing with disabilities doubly invisible. Drawing from a larger qualitative study on sexual and reproductive health in Canada during the COVID-19 pandemic, this paper examines six narratives of women aged 50 years and older with disabilities and analyzes their experiences navigating sexual and reproductive health care services. While infection prevention and control policies widely implemented across Canada during the initial years of the COVID-19 pandemic identified both older and disabled populations as especially vulnerable and in need of supports, the narratives from our study demonstrate that older women with disabilities experienced a lack of supports during the pandemic, especially as pertaining to their sexual and reproductive health. Participants recounted challenges accessing sexual and reproductive health care services during the pandemic, including menstruation and menopause-related supports, gynaecological care, and mental health care. They also described intersecting experiences of ageism, ableism, and sexism when seeking and receiving care, such as feeling dismissed, disrespected, and devalued by health care providers, which were compounded for some by experiences of racism and classism. These narratives illustrate that navigating sexual and reproductive health care when ageing with disabilities is a complex gendered experience, and affirm that sexual and reproductive health is a meaningful and important aspect of both ‘successful’ and ‘unsuccessful’ experiences of ageing with disability.