CARE AS BIOGRAPHICAL EXPERIENCE AND SOCIAL POLICY
Issue Editors: Galina Goncharova, Teodora Karamelska
THE BIOGRAPHICAL METHOD AS A RESOURCE FOR SOCIAL CHANGE
Remembering in Later Life: Some Reflections on Generating Individual and Social Change
The Development of Oral History in Palliative Care in the UK
Michelle Winslow, Sam Smith
Emotional Narratives and Emotional Communities in the Context of Parental Care in Bulgaria
ETHICAL ISSUES, STATE POLICIES AND CIVIC HEALTH ACTIVISM
Inclusive Education and Disabled People: from Care, Cure and Charity to Justice and Rights
Disability in the World of Work: Representations of Productivism and Cruel Promises
Beyond the Illness: Social Suffering and Social Practice of Care
The Promise “2020”: Laws for Those Who Leave Omelas
FAMILY AND SOCIAL DYNAMICS OF CARE FOR PEOPLE WITH DISABILITIES
“Like a Flower, Breaking through the Asphalt”: Parents’ Images of Children with Intellectual Disabilities and Autism
The Social Isolation of People with Disabilities in Bulgaria
Recomposed Families: Gender Roles and Ethics of Care
FORMAL AND INFORMAL CARE FOR ELDERLY PEOPLE
From Resentment to Forgiveness: The Spiritual Challenge to the Caregiver of a Person with Dementia
Peter G. Coleman, Pilar Callaby, Marie A. Mills
“Still Alive, but Already Abandoned”: Biographical Images of Care for Elderly Persons and Persons with Dementia
Support to Carers of Older People with Dementia: A Case Study of Two Innovative Intervention Programmes
SOCIOLOGY OF ETHNICITY
Beyond Exclusion: Consumer Culture and the Dimensions of Distinctiveness (Following the Example of “Stolipinovo”, Plovdiv)
SOCIAL DEMOGRAPHY AND CHALLENGES TO PARENTHOOD
Social-Demographic Determinants of Life-Work Balance in Bulgaria. Results from a European Social Survey
Elitsa К. Dimitrova
“Concerted Cultivation”: Pluralizing Parent Care among Families in Central Sofia
A CONTINUING TOPIC
On the Problem of Sexual Differentiation and Gender Hierarchy in Islam
SOCIOLOGICAL ASPECTS OF THE SHADOW ECONOMY
Habutises of Informality: Social Fields for the Application of Deviant Economic Behavior Models
SCIENTIFIC EVENTS - Full text – PDF/ FREE
A Scientific Conference of BSA “The European Social Survey, Bulgaria (ESS-ERIC)” (14 May 2019, Sofia)
Conference “Better Chances for Young People in the Danube Region” (15–17 May 2019, Zagreb)
COMMENTS AND REVIEWS - Full text / FREE
Communities and Personalities in Sociology (N. Genov, On Sociology, 2019)
Following the Tracks of Consumer Culture (Approaching consumer culture: global flows and local contexts, Blagoeva, E. (ed.), 2018)
Instead of a Review (Challenge: Condominium! 2018; Challenge: Rights in Rem over Another’s Property! 2019, Stavru, S. (ed.))
The Commercial Slogan: A Complex Phenomenon in a Short Genre (G. Furkova, The Language of the Commercial Slogan, 2019)
NEW BOOKS - Full text – PDF/ FREE
REMEMBERING IN LATE LIFE: SOME REFLECTIONS ON GENERATING INDIVIDUAL AND SOCIAL CHANGE
Reminiscence-based activities developed as a practical intervention in care relationships with older people during the early 1980s in the UK and USA. Core to these was the acknowledgement that remembering the past and events in individual past lives could be a rewarding and enhancing experience for older people. Developments drew on the observations of the psychogeriatrician Robert Butler and a commitment to dealing with issues relating to the quality of life of frail older people. Using an example from the UK, this chapter considers what, at the time, emerged as a movement committed to legitimising reflection on the past, where previously this had been considered symptomatic of mental decline. It was argued that to encourage older people to talk about the past would improve cognitive states, prevent negative feelings, combat isolation and enhance feelings of self-worth. Since the 1980s successive decades have seen the re-discovery of reminiscence as a positive intervention in the lives of older people with a focus on dementia being the current emphasis. In this chapter I argue, with support from research into reminiscence-based activities, that participation should be understood as being less about modifying aspects of the ageing process and more about the humanising of social care relationships, within families, communities and in care settings, through the recognition and celebration of individuality and life experience in old age.
Keywords: reminiscence-based activities, oral history, recall, late life remembering, life review, dementia, care relationships
THE DEVELOPMENT OF ORAL HISTORY IN PALLIATIVE CARE IN THE UK
MICHELLE WINSLOW, SAM SMITH
This article discusses oral history work in palliative care in the UK that offers people with life-limiting illnesses opportunities to audio record their life stories. Oral history is a biographical approach that captures personal experience and perspective, it complements and enhances palliative care by offering opportunities to record memories and have them permanently archived. Oral histories are recorded with no time limit or medical agenda and enable an expression of identity. Research on the impact of oral history in palliative care has identified benefits and challenges. Oral history provides a validating and dignified social activity, enables expression of pre-diagnosis identities that reveal the ‘person behind the patient’. Bereaved family and friends highlight that an important aspect of oral history is the creation of a voice recording as a lasting memory. Ethical and practical challenges include working with people whose ability to participate is affected by illness and the emotional impact of personal reflection. Oral history in palliative care offers insight into living with life-limiting illness and preparing for end of life and has capacity to benefit the wellbeing of participants and family.’
Keywords: oral history, palliative care, wellbeing, challenges
INCLUSIVE EDUCATION AND DISABLED PEOPLE: FROM CARE, CURE AND CHARITY TO JUSTICE AND RIGHTS
This paper discusses the educational aspects of the historical transformation of disability from a matter of care, cure and charity to a matter of social justice and human rights, initiated and led by the disabled people’s movement. The first part of the paper considers the social model of disability and its significance for the UN Convention on the Rights of Persons with Disabilities. The second part focuses on inclusive education, regarding it as a major element of the transformation of disability into an issue of justice and rights. The concluding section analysis the practice of inclusion both globally and in Bulgaria by discussing various barriers to inclusion (lack of adequate support, large groups and classes, ableism, rigid curricula, overvaluation of academic achievements, selectivity), their links to disciplinary power and marketisation, and possibilities for their overcoming.
Keywords: inclusive education, social model of disability, UN Convention on the Rights of Persons with Disabilities, disciplinary power, marketisation
DISABILITY IN THE WORLD OF WORK: REPRESENTATIONS OF PRODUCTIVISM AND CRUEL PROMISES
The article contends that we can witness a passionate embracing of an interpretative grid, structuring, constructing and governing the ways the people, whose lives are profoundly affected by disability (either as being disabled themselves or as primary caregivers), categorize the world, their subjectivities and the others. This grid is based on the image of exchange and investment, whose moralized counterpart is the deservingness/undeservingness pattern of justifying what one is entitled to and what one has a right to demand. In this perspective the “social value” and inclusion of the disabled ultimately appear to depend on the participation in the “work utopia” – the morally dignified imagery of productivity, accompanied by stigmatization of disability assistance. This identity formation framework should be regarded as an unfortunate way of directing and governing the collective energies, demanding social inclusion. It generates and legitimizes the lack of solidarity with the most vulnerable members of society and even among their communities as this case clearly shows.
Keywords: disability, paid labour, productivism, solidarity, cruel promises, neoliberalism
BEYOND THE ILLNESS: SOCIAL SUFFERING AND SOCIAL PRACTICE OF CARE
The article presents the idea of the illness as a source of social suffering to the patient and his/her family. Suffering is thought as a consequence of the lack of institutionalized care practices that set the political commitment to guarantee a decent life for the sick and their relatives. Тhе emphasis on the concept creates the need of taking a public responsibility to reduce the social suffering, and at the same time it subjects to moral condemnation the inaction.
The social experiences of suffering and the social response to what it causes people are seen as significant forces shaping interpersonal relationships, intragroup dynamics, and the nature of the institutional measures being taken.
Keywords: social suffering, illness, disability, policies
THE PROMISE “2020”: LAWS FOR THOSE WHO LEAVE OMELAS
The article summarizes the main issues raised by the new regulations, proposed by the Bulgarian legislator at the end of 2018 and in the beginning of 2019as legal solutions to some of the problems of people with disabilities. Unfortunately, the search for these answers was not a legislative initiative itself, but a reaction to the “mothers protests” that lasted almost all throughout the 2018. Three laws were adopted: Disability Act: promulgated on 18.12.2018, in force since 1.01.2019; Personal Assistance Act: promulgated on 18.12.2018, in force since 1.01.2019; and the Social Services Act: promulgated on 22.03.2019, in force since 1.01.2020. The postponement of the most significant of the three laws – the Social Services Act, for the beginning of 2020 is the reason why the proposed legislative decisions should be referred to in this report as The Promise “2020”. An analysis is made of the new actors around which social services are organized and the state's efforts to ensure the protection of these rights, focusing on the regulatory lines that go through the everyday life of people with disabilities.
Keywords: people with disabilities, disabilities, protests, mothers, rights, protection, regulations, laws, everyday life
“LIKE A FLOWER, BREAKING THROUGH THE ASPHALT”: PARENTS' IMAGES OF CHILDREN WITH INTELLECTUAL DISABILITIES AND AUTISM
The article traces the images that parents produce of their children with intellectual disabilities and autistic disorders. The analysis combines concepts, influenced by E. Goffman’s theory of stigma, on the one hand, and critical disability studies, on the other. The role of the normative discourses that filter individual response to disability is considered, but a zone of possible resistance to these discourses is also outlined. It is argued that parents’ stories contain both negative and positive representations, which are entangled, have complicated temporal dynamics and reveal ambivalent experiences. These dual images are located within several registers: denial and/or acceptance; normalcy and/or difference; punishment and/or gift; suffering and/or joy. The main aim of the study is to find out to what extent and in what forms the representations that parents provide and the hybrid children’s identities they construct, reproduce but also contest the existing normative conventions of life with disability, of parenthood, childhood, and subjectivity. The article focuses on the conventions of “normality” which have a prescriptive, and therefore, a normative character, and whose contents are determined by psycho-medical and more general socio-cultural scripts.
Keywords: parents’ representations of children with disability, intellectual disabilities, autusm, care, stigma, (ab)normality, normative scripts, hybrid identities, ambivalent experience
THE SOCIAL ISOLATION OF PEOPLE WITH DISABILITIES IN BULGARIA
The issue of social isolation of the disabled people is certainly not new; it has been a center topic since the end of the last century. The reason for discussing such a problem is relatively simple: the difference between healthy and unhealthy individuals. This division, which is typical for the flora and fauna, has become apparent since the dawn of the human development – the strongest and most adaptable survive, while the weak are being rejected, isolated or killed.
The thesis that is defended is that people with disabilities actually live, if not in full, in substantial isolation. The main factor for this is the state that does not provide the necessary financial and social conditions for a positive change. Excerpts from biographical and expert interviews will be applied to the arguments, concerning some of the most pressing issues in caring for the impaired. These include the social rejection and stigmatization of this vulnerable group, the transfer of stigmatization to the parents of such people, the breakdown of the family community, the scarcity of resources, institutions and skilled staff to adequately cultivate and adapt such individuals, the fear and insecurity that accompany everyday life of the carers.
Keywords: disability; isolation; stigmatization; Bulgaria
RECOMPOSED FAMILIES: GENDER ROLES AND THE ETHICS OF CARE
The article examines the biographical situation of the families of children with disabilities in Bulgaria. The recomposed families appear as a result of the reorganization of the family structure due to the reduced autonomy of the child and related to the change in the number and gender of the particular individuals involved, as well as the specific roles they occupy in it. Different gender divisions are analyzed, such as those of psychological attitudes towards disability, of perception of parenthood and of division of labor.
Keywords: recomposed families, gender roles, ethics of care, gender attitudes towards disability
FROM RESENTMENT TO FORGIVENESS: THE SPIRITUAL CHALLENGE TO THE CAREGIVER OF A PERSON WITH DEMENTIA
PETER COLEMAN, PILAR CALLABY, MARIE MILLS
Caregiving in the situation of dementia poses major challenges to family members, but the spiritual aspect of the challenge is less often addressed. Caring for a person with dementia inevitably involves unreasonable demands upon the carer. It may also become more difficult to distance oneself from previous sleights for which the dementing person can no longer make amends. In these situations any sense of forgiveness for past wrongs can be engulfed by feelings of resentment. In this presentation we discuss the Christian concept of the person in relationship and how family relationships may need to be sustained from within the larger community outside of the family as dementia increases in one of its members. We also refer to recent initiatives which have been piloted by the second author with family carers in Hampshire, U.K., which have aimed to help dementia caregivers with the essentially spiritual tasks of finding emotional release and transcending their feelings of hurt.
Keywords: concept of the person, family relationships, caregiver burnout, emotional healing, support groups
"STILL ALIVE, BUT ALREADY ABANDONED": BIOGRAPHICAL IMAGES OF CARE FOR ELDERLY PERSONS AND PERSONS WITH DEMENTIA
The article reconstructs the biographical images of care for people of advanced age and people with dementia, in the perspective of caregivers (relatives or social assistants) in a family environment or in an institution. The author discusses the potential of religiousness and of the narrative biographical construction of identity as a therapeutic resource for dealing with borderline life situations related to aging and illness.
Keywords: care for elderly people, dementia, religiousness, narrative construction of identity
SUPPORT TO CARERS OF OLDER PEOPLE WITH DEMENTIA: CASE STUDY OF TWO INNOVATIVE INTERVENTION PROGRAMMES
Caregiver burnout in dementia is concerned with physical and emotional exhaustion, involving the development of a negative self-concept and an unhealthy or resentful attitude toward the caregiving role. This paper explores two interventions aimed at alleviating the psychological strain on carers, and resulting in a supportive environment for carers to perform their role. The paper explores key concepts involved in the facilitation of behavioural change, and the promotion of emotional growth through self-expression resulting in a better quality of care for the person living with dementia.
Keywords: caregiver burnout, dementia, facilitated mediation, person-centred approach
BEYOND EXCLUSION: CONSUMER CULTURE AND THE DIMENSIONS OF DISTINCTIVENESS (FOLLOWING THE EXAMPLE OF “STOLIPINOVO”, PLOVDIV)
The following article, starting from critique of the concept “the successful roma”, presents an alternative point of view on how the construction of identity and the dimensions of its distinctiveness take place among the residents of “Stolipinovo”. The aim of the analysis provided is not to show that “all of the roma are consumers”, but to place emphasis on the fact that, in order to “understand” the neighbourhood (following Bourdieu) and its construction as a specific social space cannot solely be achieved via the means of discourses on deprivation, inequality, exclusion and marginalization, but also requires to take into account the practices of consumption which can be observed in the neighbourhood, practices that are the result of wider social changes, directly connected to the transition towards consumer societies and the consumer culture that is characteristic of them.
Keywords: consumer culture, distinctive identities, Stolipinovo
SOCIAL-DEMOGRAPHIC DETERMINANTS OF LIFE-WORK BALANCE IN BULGARIA. RESULTS FROM EUROPEAN SOCIAL SURVEY
ELITSA К. DIMITROVA
The article focuses on the socio-demographic determinants of work-life balance in Bulgaria. With the development of post-industrial societies, the life-work balance becomes particularly important. The article provides a theoretical overview of the leading concepts on work-life balance. Data from the European Social Survey conducted in 2010 in Bulgaria was used. A descriptive statistical analysis was carried out and a logistical regression model was applied in order to highlight the factors that affect the balance between private and professional life. The analysis shows that there are significant gender differences in the satisfaction of the balance between private and professional life among men and women in Bulgaria. Education and occupational status of individuals are significant predictors of the satisfaction of the life-work, as they are directly related to the profession that individuals exercise. Higher education is related with higher satisfaction of the balance between private and professional life. Individuals who have their own business (self-employed) have significantly lower satisfaction of the balance between working and personal life.
Keywords: life-work balance, work, family
“CONCERTED CULTIVATION”: PLURALIZING PARENT CARE AMONG FAMILIES IN CENTRAL SOFIA
In this article I look at the specifics of an ever more popular model for raising children in central Sofia. In this model the everyday life of the family focuses on the extracurricular activities of the children and the engagement of the parents with their organization and realization. In the Sofia version of “concerted cultivation” (Lareau, 2011) children attend at least two after class activities which burdens them with additional work, while their parents face substantial time and financial engagements. In comparison to practices of “concerted cultivation” in other cultural contexts where extracurricular classes are seen as enrichment activities, institutionalized forms of play and children’s socialization, my contention is that among the studied families in central Sofia the engagement of children with multiple educational after school classes can be seen as a major strategy for increasing their social capital and gaining advantage in uncertain times. Parents invest in their children’s academic development to compensate for insecurities of the present and worries about the future. The instability of their own economic position, as well as their personal experiences and will to provide better alternatives for their children are the main factors which contribute to the creation of a new image of childhood by these parents – that of a work environment and preparation stage for successful future.
Keywords: parenting practices, childhood, central Sofia, “concerted cultivation”
ON THE PROBLEM OF SEXUAL DIFFERENTIATION AND GENDER HIERARCHY IN ISLAM
The aim of the present study is to delineate some of the major Islamic jurisprudental approaches to the regulation of the cases challenging the normative sexual differentiation and the legal foundations of the sharī‘a marriage that recognizes as legitimate solely the heterosexual relationships. The pursuit of this objective requires a consideration of the Islamic binary sex paradigm that sets strictly defined gender roles for men and women in the religious and ritual practice and the system of social relationships among Muslims. The essay foregrounds some prevailing judgments and opinions of Sunnī and Shī‘a religious scholars and jurisprudents about intersex people with ambiguous genitalia (khunthā) and the insufficiently clear gender category of the so-called mukhannath. In so doing, the analysis re-examines the issue of the Islamic permissibility of the sex-change surgery in the cases of individuals with transgender identities.
Keywords: Islam, sex, gender, khunthā, mukhannath
HABUTISES OF INFORMALITY: SOCIAL FIELDS FOR THE APPLICATION OF DEVIANT ECONOMIC BEHAVIOR MODELS
The text presents an original interpretation of informality in economic relations, systematized and described through the habituses of informality, within which individuals apply different deviant models of economic behaviour. Each of the identified behavioural patterns has a strongly recognizable specificity, both in value normative aspect and in terms of preferred means (legitimate or illegitimate) to achieve the personally significant goals. The behavioural patterns described are empirically captureable, thus making them easy to be recognized and accessible for research.
Keywords: shadow practices, habitus, deviant behaviour, behavioural models, anomie