Joanna Ferrie

Don’t get involved: an examination of how public sector organisations in England are involving disabled people in the Disability Equality Duty

The Disability Equality Duty (DED) came into force in December 2006. It stipulated that all public sector organisations were to develop policies to promote the equality of disabled people as staff members, consumers or visitors. Its emergence comes as part of a network of social policies developed over the last 20 years to promote disability rights and citizenship in the UK. However unlike previous legislation, the DED set in place the need for organisations to be proactive in their policies and work with disabled people to move towards change in public sector cultures and working practices. This article reports on this early stage of implementation in England. Findings show that whilst some progress has been made in securing change, practice varied greatly. Therefore if a fundamental change in the culture of work and service provision is to be secured, this key requirement will need to be given a higher priority by organisations.

Sociology and human rights: what have they got to say about care and dignity?

The focus of this contribution mainly falls on the relevant policy concerning care in the United Kingdom pertaining to older people, people with mental ill health and anyone else in receipt of health and/or social care services. It offers an attempt to consider the impact that sociology could have on improving the ethical practices of care. Attempts to assert rights in residential care have been challenged by a dominant culture that has eroded claims to citizenship. It is argued that this is due to a legal emphasis on regulation through care standards that has limited use because it avoids the realities of care. This contribution argues that a purely legal understanding of human rights is inadequate to address the social realities of inadequate care. The treatment of and provision of care for people living in long-stay institutions requires a human rights framework that operates socially rather than legally to recognise lived experiences in order to empower and emancipate.

Methodological challenges in developing an evidence base, and realising rights

ABSTRACT This paper focuses on the methodological challenges for a small nation, with a view to reforming and realising human rights. The paper begins with a review of traditional measures that capture comparative data and the limitations of indicators generally and for capturing violations in Scotland: particularly those that are hidden (because they happen in private spaces or to those without power) need to be clearly understood to decide on what reform is required. This creates methodological challenges in collecting data, which is perhaps not understood within a human rights framework and so is not reported adequately. The paper will focus on Scotland’s national action plans as vital for creating a space allowing for data collection and solution generation, shared by those who experience violations and those with the power to challenge. Diffusing responsibility for action to Rights Holders and Duty Bearers engaged in creating the space facilitates reform. This approach lends legitimacy to those who are violated, as they appear in spaces where their experiences are recognized within a human rights framework, while also exposing violations not captured by comparative indicators. It also highlights that a state must be committed to reform regardless of the methodology used if it is to realise rights.

‘Running out of time’: Exploring the concept of waiting for people with Motor Neurone Disease

Waiting is a part of everyday life. It is often characterised by its banality: its quotidian nature. Time spent waiting can be seen as boring, wasted, and at times painful or distressing, or conversely hopeful or full of potential. The experience of Motor Neurone Disease (MND) reveals a population for whom (limited) time has a significant impact on quality of life. This paper will argue that waiting, for people with MND, exemplifies the relationship between time, power and agency. In so doing we can better conceptualise the manifold ways in which time and waiting are experienced through choosing to wait, enforced waiting and waiting when time is known to be ‘running out’. Through a sociological analysis of multiple forms of waiting three key themes emerged that characterised waiting as powerlessness; emotional (as a form of production), and; alternating as an experience between patience and endurance. This paper challenges the passivity, universality and ambivalence ascribed to waiting and instead argues that waiting affects the ‘time left’ for people with MND. It also offers up a lens through which to view time through the multiple textures and tensions of waiting produced through chronic illness.