Anna Whitaker

A Long Life With a Particular Signature: Life Course and Aging for People With Disabilities

What does it mean to live a long life and grow old with disabilities? Or to be an aging parent and still be a caregiver to a disabled adult child? These are questions discussed in this article, the aim of which is to show how a life course perspective adds insight to the lived experience of disability and ageing of adults with disabilities. It is argued that the time concept is fundamental to the understanding of the lives of disabled people. Results are presented which challenge established knowledge regarding disability policies, autonomy, body, biographical disruption and prerequisites of active aging.

End of life and dimensions of civil society: The Church of Sweden in a new geography of death

Abstract Over the past 10 – 15 years the geography of death has changed in Sweden. Dying and end-of-life care has to a great extent been moved out of hospitals back into the local community, and renewed attention is given to dying and spiritual care issues. Yet, at the same time, a new ideological investment in civil society has taken place, which ascribes caring and networking qualities and resources that may not always be encountered in practice. This article discusses the implications of this situation, by focusing on the role of the Church of Sweden, as an actor in civil society, and on its support for parishioners in their end-of-life phase. Questions discussed are: what role do local church parishes play in the care of dying parishioners, and what is the meaning of parish belonging and networks in this context? Results from a study of all parishes in two Swedish, medium-sized, communities indicate that support for dying parishioners is surprisingly uncommon, while most parishes offer support for the bereaved. The article argues that this may be an indication of failing resources, on the part of the parishes, to meet the needs of these contrasting situations. While a relational logic motivates support for the dying parishioner, support for the bereaved seems to follow a service logic, one with which the representatives of the parishes are more at ease. Networks and personal relationships seemed to be the heart of the matter and the concept of social capital was used to capture this phenomenon. In a more general sense, however, the results illustrate the partly contradictory roles and strategies that the Church has adopted in order to face different interpretations of civil society and ongoing societal change in Sweden.

Family as failure? The role of informal help-givers to disabled people in Sweden

Based on a survey mapping all unpaid help and care work in the county of Stockholm, this article focuses on the informal help and care carried out for long-term ill and/or disabled people aged 64 or younger. The findings indicate that these forms of support are common and that the informal help-givers work many hours every month. Yet the impact of this work is quite invisible in texts on disability policy and there is a void of research addressing this issue. This article argues that, in spite of welfare state arrangements and reforms, families play a crucial role in providing resources, notably help and care for disabled family members. Their invisibility is interpreted as an expression of the fact that the care concept has become politically incorrect. In the light of modern disability policies, with its ideals of autonomy and empowerment, help and care provided by families to adults aged 64 or younger stand out as a dilemma and a contradiction. Making help and care provided by families invisible can be interpreted as one way of solving this contradiction.

With or without Faith. Spiritual Care in the Church of Sweden at a Time of Transition

The article describes spiritual care offered by the Church of Sweden to people in the last phase of their lives and to the bereaved. The Church ministers in a secularized society. Its changed place in the culture can be seen in the fact that it was recently officially separated from the State. The article contrasts the languages of spiritual care about the support given to those in their last phase of life, compared to those in grief. Traditional theological language is used with the dying, while the newer psychological “clinical lore” is used with the bereaved. These contrasts are expressions of the different positions linked to expectations that are connected with roles that the representatives of the Church are trying to meet.

Spiritual Care in the Last Phase of Life: A Comparison between the Church of Sweden and the Church of Finland

This article deals with the Church of Sweden and the Church of Finland and their spiritual support for parishioners during their end-of-life phase. Support for the dying seemed uncommon in both countries, while most parishes offered support for the bereaved. The Finnish respondents expressed more confidence in their spiritual role than did the Swedes. This may have to do with the role of the churches in their respective countries and the varying geographies of death.