Joan Ablon and her esteemed colleague and founder of the Division of Medical Anthropology, Margaret Clarke, helped forge a new discipline by identifying new parameters for anthropological research into the meaning of healing and suffering in social and cultural organization. Their students expanded the horizons which the new discipline could aspire to, the methodologies needed to reach them and established this new intellectual trajectory in many divisions of the academy. Many of the leading intellectuals of the SMA itself were trained in the Medical Anthropology doctoral program Joan and Margaret created.
Friends of the department may also be interested to read the Feschrift (June 2004) edition of Medical Anthropology Quarterly which was devoted to Joan's work and career. Many of her former students, now leaders of the discipline contributed and she provided an extremely witty review of her academic life herself.
Dr. Ablon's research has focused on a wide variety of topics including
stigmatized genetic health conditions, therapeutic self-help groups
and social support systems, neurofibromatosis, dwarfism, alcoholism
and the family, disability and chronic illness, and contemporary
middle-class and ethnic family structure and life styles.
CURRENT & RECENT RESEARCH
Illness Narratives: Psycho-social Issues in Osteogenesis Imperfecta, (Ablon, Principal Investigator, NSF funded, 9/1/95-8/31/98). This research focuses on the past and present life experiences, coping patterns, and strategies for daily living of adult individuals with osteogenesis imperfecta (OI), a heterogeneous group of inherited disorders of collagen. Affected individuals suffer frequent bone fractures throughout their lives, often with consequent devastating physical disability.
The goals of the research are:
1. To obtain through life history narratives, accounts of how adults with osteogenesis imperfecta have coped with and managed their condition through the life course. 2. To understand the subjective "illness" experience these individuals have undergone as concomitants of severe and intrusive surgical procedures that few non-affected lay persons know about or could imagine. 3. To trace the development of self-images of the body in individuals who are often physically different from those idealized in American cultural prescriptions for bodily beauty, health, and autonomy. 4. To examine the concept of an "OI personality." Affected individuals are often described as exceptionally bright, assertive, articulate, and euphoric. How did this concept emerge and to what degree is it valid?
The preliminary findings of this research are the following: (1) Most persons have not been satisfied with their medical care, and in many situations have felt that surgeries and other procedures have worsened their condition; (2) The subjects displayed a variety of remarkable accomplishments and appear to well fit the stereotype of gifted and superior individuals. "Socio-cultural Dimensions of Neurofibromatosis," ( Ablon, Principal Investigator, NSF Funded, 7/1/89-12/31/92).
This research focused on the life experiences, coping patterns and strategies for daily living, and social supports of individuals and families with neurofibromatosis (NF1), a progressive and often disfiguring chronic neurological disorder. The individual with NF1 faces a lifetime of dealing with an oftentimes disfiguring and disabling disease whose prognosis is uncertain. The disease may result in a highly stigmatized situation for the individual and his/her family. The project examined the impact of genetic disorder, disability, and stigma on varied dimensions of life style and life course. Also examined were the meeting format, dynamics, and functions of local and national NF support groups. "The Elephant Man's Disease" was for many years misdiagnosed as NF1 and this research documented the ways in which the media-created image of the elephant man as the height of ugliness affected the adaptation of individuals and families to their condition, and impacted on the scientific world.
The findings of this research include the following: (1) Most patients were dissatisfied with their medical care;
(2) Learning disabilities were the most devastating symptom despite many other problematic and physically visible symptoms.
(3) Adaptation of individuals to their condition was not necessarily related to severity or visibility, or familiarity through a parent's condition. Positive adaptation was linked to a strong supportive family in early life and to gender considerations. Men, more than women, appeared to be affected by learning disorders and other symptoms, and very early retreated from social life.
Utility of Findings: The study provides practical suggestions for improving care of patients by parents and providers. Findings emphasize the importance of early positive family support and, particularly, of good communication between parents and children. It also appears imperative to bolster the self-esteem and confidence level of affected male children even more than of female children. Practitioners are able to address patients' anxieties and needs through more sensitive communications, a total life cycle focus, improved systems of continuity of care, and support group referrals. |
