Gary L. Albrecht

The disability paradox: high quality of life against all odds

This paper builds on the work of Sol Levine to examine a disability paradox: Why do many people with serious and persistent disabilities report that they experience a good or excellent quality of life when to most external observers these individuals seem to live an undesirable daily existence? The paper uses a qualitative approach to develop an explanation of this paradox using semi-structured interviews with 153 persons with disabilities. 54.3% of the respondents with moderate to serious disabilities reported having an excellent or good quality of life confirming the existence of the disability paradox. Analysis of the interviews reveals that for both those who report that they have a good and those who say they have a poor quality of life, quality of life is dependent upon finding a balance between body, mind and spirit in the self and on establishing and maintaining an harmonious set of relationships within the persons social context and external environment. A theoretical framework is developed to express these relationships. The findings are discussed for those with and without disabilities and directions are given for future research.

Handbook of social studies in health and medicine

Introduction - Gary L Albrecht, Ray Fitzpatrick and Susan C Scrimshaw PART ONE: SOCIAL AND CULTURAL FRAMEWORKS OF ANALYSIS The History of the Changing Concepts of Health and Illness - Bryan S Turner Outline of a General Model of Illness Categories Social Theorizing about Health and Illness - David Armstrong Classification and Process in Sociomedical Understanding - Robert A Rubinstein, Susan C Scrimshaw and Suzanne E Morrisey Towards a Multilevel View of Sociomedical Methodology The Social Construction of Medicine and the Body - Deborah Lupton A Taxonomy of Research Concerned with Place and Health - Ralph Catalano and Kate E Pickett The Globalization of Health and Disease - Emily C Zielinski Guti[ac]errez and Carl Kendall The Health Transition and Global Change The Social Causation of Health and Illness - Johannes Siegrist Socioeconomic Inequalities in Health - Stephanie A Robert and James S House Integrating Individual-, Community-, and Societal-Level Theory and Research Gender and Health - Sandra D Lane and Donald A Cibula Critical Perspectives on Health and Aging - Carroll L Estes and Karen W Linkins The Social Context of the New Genetics - Sarah Cunningham-Burley and Mary Boulton PART TWO: THE EXPERIENCE OF HEALTH AND ILLNESS Cultural Variation in the Experience of Health and Illness - Ann McElroy and Mary Ann Jezewski Ethnography and Network Analysis - Robert T Trotter II The Study of Social Context in Cultures and Societies Personal Experience of Illness - Arthur Kleinman and Don Seeman Clinical Narratives and the Study of Contemporary Doctor-Patient Relationships - Mary-Jo DelVecchio Good and Byron J Good Accounting for Disease and Distress - Margaret Lock Morals of the Normal and Abnormal Experiencing Chronic Illness - Kathy Charmaz The Global Emergence of Disability - Gary L Albrecht and Lois M Verbrugge Reproduction and Assisted Reproductive Technologies - Hel[ac]ena Ragon[ac]e and Sharla K Willis Health-Care Utilization and Barriers to Health Care - Judith D Kasper Concepts and Measurement of Health Status and Health-Related Quality of Life - Colleen A McHorney Health Behavior - Thomas R Prohaska, Karen E Peters and Jan S Warren From Research to Community Practice PART THREE: HEALTH-CARE SYSTEMS AND PRACTICES The Medical Profession - David Coburn and Evan Willis Knowledge, Power, and Autonomy The Sociological Character of Health-Care Markets - Donald W Light Medical Uncertainty Revisited - Ren[ac]ee C Fox Alternative Health Practices and Systems - Sarah Cant and Ursula Sharma Comparative Health Sytems - Linda M Whiteford and Lois LaCivita Nixon Emerging Convergences and Globalization The Patients Perspective Regarding Appropriate Health Care - Angela Coulter and Ray Fitzpatrick Consumer and Community Participation - Deena White A Reassessment of Process, Impact and Value An Expanded Conceptual Framework of Equity - Lu Ann Aday Implications for Assessing Health Policy Resources and Rationing - Stephen Harrison and Michael Moran Managing Supply and Demand in Health Care Reconfiguring Health Policy - Steven Lewis, Marcel Saulnier and Marc Renaud Simple Truths, Complex Solutions

The Association of Menopause and Physical Functioning in Women at Midlife

OBJECTIVES: To determine whether the characteristics of menstrual bleeding and the menopausal transition are associated with physical functioning in women age 40 to 55, after considering ethnicity, ability to pay for basics, body size, and age.

A cross national study of patterns of sexual behaviour

The global Acquired Immunodeficiency Syndrome (AIDS) and the fact that the Human Immunovirus (HIV) is sexually transmitted have highlighted the need for more information on patterns of human sexuality especially with regard to high-risk practice and behaviors. Consequently the World Health Organizations Global Programme on AIDS (in collaboration with Member States) has developed research materials that can be used to define dominant patterns of sexual behavior in different social and cultural environments in order to facilitate targeting AIDS prevention and control activities. This paper describes the inception of this study and discusses the rationale the conceptual framework the interview schedule the pilot data the research design and data analytic strategies. (authors)

Functional limitations in women at midlife: the role of health conditions, behavioral and environmental factors

This study examined risk factors for functional limitations in a community-based sample of 16,065 women from 5 ethnic groups, aged 40-55 years, enrolled in the Study of Womens Health Across the Nation. Almost 20% of this sample reported physical-functioning limitations. Functional limitations were associated with numerous disease conditions, including high blood pressure, diabetes, heart attack or angina, arthritis, osteoporosis, and cancer, and with several behavioral and environmental risk factors, including body mass index, difficulty paying for basics, and high levels of perceived stress. Consistent with findings in older women, this study shows that in addition to health conditions, potentially modifiable risk factors including high body mass index, difficulty paying for basics, and high levels of stress are associated with physical-functioning limitations of women at midlife.

Videotape safaris: Entering the field with a camera

In this paper, I examine how video methods are used to record what people do as a basis for generating ideas, constructing data, testing hypotheses, and developing grounded theory. Fieldwork with a camera captures emergent social structure and processes that arise from human interaction. While the discovery of serendipitous findings through video methods provokes new theoretical questions, this intrusion into the lives of others also raises ethical and legal issues for the researcher. I conclude that video methods constructively reorient the investigator to the behavior being studied.

Disability Humor: What's in a Joke?

Disability humor raises a hidden paradox that makes people feel uncomfortable. What is so funny about having a disability when others think that it is a tragedy? This article analyzes the social creation, context, purposes and consequences of disability humor. Disability humor is seen to be anchored simultaneously in tragedy and comedy so that both literary vehicles give meaning to the disability experience.

Living on the Margin: Disabled Iranians in Belgian Society.

This paper explores the antecedents, experiences and consequences of marginalization as reported and dealt with by disabled Iranian immigrants in Belgium. This work extends the work of Gallie and colleagues and Siegrist demonstrating that the forces of marginalization applicable to all immigrants are particularly pertinent to disabled immigrants. The research is based on 26 in‐depth, face‐to‐face interviews, focus groups, interviews with government officials and immigration experts, ethnographic work and official government statistics. The findings detail how the combined forces of history, context and reasons for immigration; isolation, vulnerability and perceived loss of control; religion and rejection; lack of reciprocity in social exchanges; problems in obtaining jobs; and difficulties in negotiating an entry into Belgian society combine to sustain marginizalation. As a consequence, disabled immigrants in this group are generally excluded from society and discriminated against in terms of citizenship, education, jobs and general acceptance.

Rationing health care to disabled people

Combining a political economic perspective with a case study approach, this paper examines the intent, process, and consequences of rationed care for disabled people under the U.S. managed care system. Two disabled persons were followed over a three-year period as they sought care for major episodes relating to chronic depression and post-polio syndrome. The findings illustrate a marked disparity between the concept and goals of rationed care and the experience of consumers of services. For these people, care is rationed at the service level and also in terms of restricted access to, and payment for, the care sought. This often results in inadequate treatment and inflated costs. These problems are due in large part to the competitive nature of the major stakeholders, institutional coalitions that work against patients, emphasis on profit maximisation, devaluing of the lives of disabled people and the weak bargaining position that disabled persons hold as consumers.

Family Consequences of Children’s Disabilities

ues are an integral part of marriage promotion curriculums. Another crucial finding of her research is that marriage promotion, as a cure for poverty, is a failure. According to the social scientists Heath refers to, the act of marriage and not the institution of marriage is proven to fix poverty. She explains the relationship is much more complicated rather than causal, as exemplified in implementation of marriage promotion in Oklahoma. In addition, the programs set up do not actually serve to close what is called ‘‘the marriage gap’’ between white middle-class couples and poor single mothers, but rather widens it. It does so by reinforcing already existing race and class inequities. The marriage classes for poor single mothers on welfare are mandatory, yet the classes proved to be unrelated to their lives, did not address the actual needs of the participants, while also being condescending and judgmental about their situations. Heath does the important work of going into the field and interviewing the people who define, create, and use marriage promotion programs. The strengths of the book are the substantive chapters, her illumination of the boundary work implicit in marriage promotion policies and her methodological point of the importance of cultural analysis and sexuality studies as crucial to understanding public policy decisions. Heath shows us how marriage discriminates and how marriage movement advocates attempt to bring together the American nation under one kind of marriage. At the same time, the book would have benefitted from a more nuanced and deeper analysis of the historical and cultural context that created the conditions for marriage promotion currently. While she discusses the role of marriage in defining political and religious conservatism, at times marriage is portrayed as ahistorical and static. Even though the divorce rate has increased and marriage rates have dropped, the ideology of marriage as the ideal form of family seems to have remained intact in many ways. It would have been useful to get a better sense of how or why the ideology of marriage has changed, or remained the same. This book is invaluable to those doing work in the area of welfare policy, family policy, and gay and lesbian rights. It offers a window on the inner workings of and cultural basis of policy implementation from the bottom up. Heath shows the relationship between the politics of marriage and the conditions of social and economic inequality, and makes clear the important role that marriage plays in society and the polity beyond our private lives. She points us in the direction of further research along this vein.