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The Cambrian (Miaolingian; Wuliuan) Spence Shale Lagerstätte of northern Utah and southern Idaho is one of the most diverse Burgess Shale-type deposits of Laurentia. It yields a diverse fauna consisting of abundant biomineralized and locally abundant soft-bodied fossils, along a range of environments from shallow-water carbonates to deep-shelf dark shales. Panarthropods are the dominant component throughout the deposit, both in time and space, but whereas the trilobites and agnostoids are abundant, most of the soft-bodied taxa are only known from very few specimens. Additionally, the knowledge of soft-bodied panarthropods is currently largely limited to locations in the Wellsville Mountains of northeastern Utah. This contribution describes 21 new soft-bodied panarthropods from six locations, including the first occurrences of soft-bodied panarthropods in the High-Creek, Smithfield Creek, Spence Gulch, and Two-Mile Canyon localities. Additionally, we report the presence of bradoriids— i.e., Branchiocaris pretiosa Resser, 1929, Perspicaris? dilatus Robison and Richards, 1981, Naraoia? sp. indet., Thelxiope cf. T. palaeothalassia Simonetta and Delle Cave, 1975, and Tuzoia guntheri Robison and Richards, 1981—for the first time from the Spence Shale Lagerstätte; the first reported occurrence outside of the Burgess Shale for Thelxiope cf. T. palaeothalassia; and the first Wuliuan occurrence of Tuzoia guntheri. We also report on a new hurdiid carapace element and additional specimens of Buccaspinea cooperi? Pates et al., 2021, Dioxycaris argenta Walcott, 1886, Hurdia sp. indet., and Tuzoia retifera Walcott, 1912. This new material improves our understanding of the panarthropod fauna of the Spence Shale Lagerstätte and substantially increases our understanding of the distribution of the described taxa in time and space.
This short but concise quote captures one of this chapter's key assumptions: that the experience of ageing with a lifelong disability is something that not only influences the disabled individual, but also very much contributes to shaping the lives of the family members (DeMarle and le Roux, 2001; Dowling and Dolan, 2001; Brett, 2002; Shakespeare, 2006). While the other chapters of this book build on stories of ageing disabled people, this chapter focuses on ageing parents and their personal experiences of having closely followed a disabled child growing up and becoming adult, and also considers in what ways this experience has shaped their lives − in an historical era marked by many changes and reforms in policies regarding disability.
The aim of this chapter is to describe and analyse aged parents’ experiences of having followed a child with disability throughout the lifecourse, and of providing help and care for this child, including in later life. Various events and circumstances that have contributed to shaping the parents’ lifecourse are described. The main questions are: what does the parents’ caring role entail over time? How do parents view their own lifecourse in relation to this experience? What impacts have changed ideologies and policies had on their lives? What are the implications of ageing and becoming old to the parents? To date, these questions have only been studied to a limited extent.
This chapter is based on a qualitative study carried out during 2006 and 2007 in Sweden. Biographical in-depth interviews were conducted with 16 family members – parents and siblings – close to people with various disabilities (mainly physical) who were born between 1957 and 1982. The focus here, however, is on the 12 parents, nine women and three men. The parents were in the age range of 52 to 85 (ten were over the age of 65 and living as pensioners), and their adult disabled children were aged between 25 and 50. The children of the interviewed parents had different kinds of impairments, the most common being cerebral palsy and spina bifida.
This is the first book to address the issue of ageing after a long life with disability. It breaks new ground through its particular life course perspective, examining what it means to age with a physical or mental disability.
The risk of acquiring impairments of various kinds increases as we grow older. Such old age-related impairments are not the ones at issue in this book, however. Instead, the focus is on people who have acquired impairments or chronic illness earlier in life, perhaps during childhood, adolescence or young adulthood, and who have had better chances than those in previous generations to live long lives. The aim of the book is to discuss – from a lifecourse perspective – what it means to live a long life, to age and to become old for people who have disabilities acquired early in life. The key questions are:
• What does it mean to live a long life and to age with a physical or mental disability?
• How have the lives of disabled people been affected by an era marked by disability reforms and identity politics?
• What does it mean to be an ageing parent and continue to care for an adult disabled child?
• How are we to understand ‘couplehood’ in the case when both parties are disabled?
These are questions that have been studied only to a limited extent in disability research as well as in ageing research to date, but are explored in the following chapters.
In general, we know relatively little about disabled people's lives over time and the meaning of living with a disability for many years, to grow old and to be old. One explanation for this may be that the possibility of a long life and of growing old with disabilities is a relatively recent phenomenon. It is only since the Second World War that we have had identifiable generations of disabled people who have lived through different ages and reached an advanced age (Strauss and Shavelle, 1998; Mattsson and Glad, 2005; Nilsson et al, 2005), and when/where the lifecourse concept may appear to be relevant. Zarb (1993), who studied the living conditions of people who lived a long time with disabilities, noted that even if there are similarities between this group and other non-disabled groups of the same age, the group also has its own particular experiences shaped by life with disability.
This chapter gives a summary of the main results and perspectives presented in this volume, the aim of which was to discuss what it means to live a long life, to age and to become old for people who have disabilities acquired early in life. Key questions that have been discussed are: what does it mean to live a long life and age with a disability, either physical or mental? What are the implications of ‘becoming old’ for people who have had extensive disabilities for many years? What are the available formal and informal care resources? What does it mean to be an ageing parent and to continue to care for an adult disabled child? How are we to understand couplehood in the case when both parties are disabled? This book has adopted an overall lifecourse perspective when addressing these questions. Our intention in this final chapter is to point out the main contributions of the book, and to draw together some of the arguments presented to provide ideas for further development in the study of disability and ageing from a lifecourse perspective.
A long life with disability
How can we grasp what a long life with disability means? We have tried to explore this question from somewhat contrasting analytical perspectives and with different methodological approaches, and have found several answers rather than a single clear-cut one. An overall conclusion that can be drawn from the chapters in this book is that a long life with disability does not take one form but may have multiple shapes, depending on age at onset, time with disability, location in history, but also depending on the type and cause of the disability together with other factors such as socioeconomic position, whether the disability was visible or invisible, and societal attitudes surrounding it. We have underlined the relevance of the lifecourse approach since it can give insights into the illness and disability in its multiple shapes, and its impact over time on different phases of life. As we have seen in the various chapters, long lives with disability may also be permeated by particular types of involvement, such as political involvement, or by mutual caring roles, and, in the case of ageing parents, by caregiving over many years.