Governing canal life

This article focuses on the governance of canals in England and Wales. The Canal & River Trust (CRT), the owner and manager of the waterways, has a statutory responsibility to grant ‘certificates’ or licences. The licence constructs a category called ‘continuous cruisers’ who live aboard their boat. Drawing on a sample of interviews with ‘continuous cruiser liveaboards’ (CCLs), we discuss how their governance by the CRT has gradually encroached on their everyday lives, leading them to reconsider their lives on the canal. We illustrate this through exploring how the CRT translated obscure legislation to make it legible through techniques of simplification, but did so in a way that had problematic effects on CCLs; and how apparently enabling and constraining regulation operates, paradoxically, in contradictory ways, both significantly affecting CCLs’ everyday lives. At heart, there is a simple story here of a nomadic way of life that is of relatively recent vintage but that is being (or perceived as being) sedentarized.     

Caregiving and quality of life

ABSTRACT

The increase in life expectancy for adults with learning disabilities has extended the caring role for their parents. This study examined the experiences of older parents who provide long-term care for their adult children with learning disabilities and how they conceptualise their quality of life. Data were collected using semi-structured interviews with 27 older parent carers from four London boroughs and were analysed using framework technique. Findings indicate that most parents appraised their quality of life positively and reported benefits, despite the challenges they had to negotiate daily. The benefits from caregiving, more so in later life, were: a connected family from shared caregiving; a sense of belonging; purposeful living; a reciprocal relationship with their adult children; and personal transformations from providing care that improved their quality of life. The challenges that participants regularly encountered were: multiple losses (sleep, career, identity and friends); the added stress of the government’s Personalisation Agenda of caring services; struggles for access to services; searching for a diagnosis; worry about future care and fear of abuse when carers are unable to continue in their role; unhelpful attitudes of health and social care professionals; and a lack of empathy from friends as well as the public towards people with learning disabilities. Caregiving and quality of life are inextricably linked and the difficulties that parents experienced were mainly associated with socio-structural barriers, rather than their children’s disabilities. Importantly, the findings inform the practice of social workers and others who support this unique group of carers by providing new insights into how caring impacts on quality of life over time and how best these parents’ needs can be met. This study makes a specific contribution to understanding the lived realities of older carers and extends current conceptualisations of caregiving and quality of life among older people.     

生命法定义论

生命法是生命法学的最基本概念。首当其冲 ,研究生命法学必须首先论述生命法之定义 ,否则 ,必将“盲人摸象”各言其是 ,使生命法学研究陷于混乱。　　 生命法概念的提出邓公平同志最早提出了“生命法”与“生命法学”这两个概念。在他主编的《医药卫生法学》一书【1】中 ,他写有“现代科学技术与生命立法”一章 ,其中第二节为“生命法的原则” ,第三节为“生命法的若干进展”。他指出 :“至今为止 ,有关生命科学的法律问题 ,人们总是把它纳入伦理的范畴。看来 ,这样的研究模式需要转变 ,因为它模糊了伦理与法律的界限 ,从而削弱了法律的权威…