Life history model of adaptation to disability: The case of a 'congenital amputee'

Life histories can be used to describe (1) adaptation over time to disabling conditions and (2) the context and meaning of disabilities. Data from the life history of Diane DeVries, a 33-year old woman born with quadralateral limb deficiencies (upper extremity hemimelia, lower extremity amelia) illustrate a model for eliciting, presenting and interpreting life histories of persons with disabilities. Substantively, the life history of Diane DeVries indicates, at this time, survival within a niche of institutional supports that include marriage, church membership, and government for the disabled. Her life history is also characterized by choices that support independent living in the community and a cognitive orientation toward her own cultural normality.

Venus on wheels: two decades of dialogue on disability, biography, and being female in America

In 1976 Gelya Frank began writing about the life of Diane DeVries, a woman born with all the physical and mental equipment she would need to live in our society--except arms and legs. Frank was 28 years old, DeVries 26. This remarkable book--by turns moving, funny, and revelatory--records the relationship that developed between the women over the next twenty years. An empathic listener and participant in DeVries's life, and a scholar of the feminist and disability rights movements, Frank argues that Diane DeVries is a perfect example of an American woman coming of age in the second half of the twentieth century. By addressing the dynamics of power in ethnographic representation, Frank--anthropology's leading expert on life history and life story methods--lays the critical groundwork for a new genre, "cultural biography." Challenged to examine the cultural sources of her initial image of DeVries as limited and flawed, Frank discovers that DeVries is gutsy, buoyant, sexy--and definitely not a victim. While she analyzes the portrayal of women with disabilities in popular culture--from limbless circus performers to suicidal heroines on the TV news--Frank's encounters with DeVries lead her to come to terms with her own "invisible disabilities" motivating the study. Drawing on anthropology, philosophy, psychoanalysis, narrative theory, law, and the history of medicine, Venus on Wheels is an intellectual tour de force

Occupations, school readiness and the educational transition in neoliberal Guatemala: A critical occupational science perspective

Guatemala is undergoing an educational transition, part of the reconstruction of civil society in the wake of a 36 year long civil war. The Peace Accords of 1996 promised educational opportunities and improved outcomes for Guatemala’s poor, rural, and predominantly indigenous population. According to the UN Human Development Reports, while Guatemalans now average 4.1 years of schooling (an increase of 1.7 years between 1980 and 2012), the country lags significantly behind its neighbors Nicaragua (5.8), Honduras (6.5), and the rest of Latin America and the Caribbean (7.8) (UNDP, 2013). Guatemala is also one of the most unequal countries in the world with respect to the distribution of wealth and power. Almost 40% of Guatemalan students in first grade are not promoted to the second grade due to poor educational performance and must repeat. Common Hope, a non-governmental organization (NGO) located near Antigua, Guatemala, offers sponsorship to individual children in 8,000 low-income Guatemalan families as a point of entry for social transformation. Common Hope has launched a new initiative to target the problem of high first grade failure rates by monitoring and supporting first graders’ academic progress through social work home visits. The authors, as members of the 2012 NAPA-OT Field School (www.napaotguatemala.org), completed a four-week study of social workers’ home visits to 44 mainly Ladino families in seven villages. Occupational science theory was used critically to analyze data from a rapid ethnographic assessment of occupations, environments, routines and verbal interactions. Common Hope is using the study report to discuss best practices with its social workers (Frank, Angell, Bartzen, Florindez, & Martinez, 2012). A quantitative analysis demonstrated that the occupation of talking dominated the social work visits, versus doing things as shared activity, doing things as demonstrations, or doing things casually while talking. Observations of the preschool-aged children, however, indicated active and curious play behaviors (despite having few toys or play materials) and interest in social engagement with the researchers. Their play revealed motor, cognitive, sensory, and social capacities deemed important for school readiness but actively discouraged in Guatemalan schools. Further, observed differences in the organization of home environments, family occupations and routines offered clues to disparities in the school performance of older siblings. Expansion of neoliberal global governance means that resources needed to expand access and educational outcomes are unlikely to come from Guatemala’s public sector. Following hard on the civil war, neoliberal models of educational reform must be critically evaluated if the promise of the Peace Accords to expand educational access and outcomes is to have meaning (Mulot 2004; Poppema, 2009). Guatemala depends heavily on a transnational, civil sector of NGOs to expand educational opportunities, school attendance, and graduation rates. This paper explores: (1) How, in a resource-restricted situation such Guatemala’s, occupational science perspectives may help to make a difference for education; and (2) What the idea of a “critical occupational science” might mean. Learning Objectives: To explore the idea of a critical occupational science, through the example of Guatemala’s transition to literacy and education for its majority poor population To understand how ethnographic methods were utilized within the context of a 4-week, interdisciplinary field school to bring an occupational science lens to social work home visits To explore how an occupational science analysis is contributing to best practices of a US-Guatemala NGO that sponsors educational opportunities for Guatemalan children To understand how an occupational science perspective can be utilized in resource-restricted contexts in low-income countries such as Guatemala to contribute to an education reform agend

Panel Presentation - Critical occupational science: Ethical, philosophical and political frameworks

A recent ‘critical turn’ in occupational science challenges the discipline to expand upon being a basic science focused on the human as an occupational being or the nature of occupation (Angell, 2012; Frank, 2012; Laliberte Rudman, 2013; Sellar, 2012). This critical turn encompasses a vision of occupational science as a socially responsible intellectual and moral enterprise aimed at enhancing awareness of occupational inequities and injustices and acting to bring about social transformation and enable occupation as ‘a human right’. Excitingly, this challenge is being responded to and a growing body of work in occupational science is attempting to enact what, in this panel, will be framed as ‘critical occupational science’. This activity among occupational scientists intersects with recent international developments to develop politically oriented occupational therapy. Given that critical scholars emphasize the need for continuous collective reflexivity regarding the ethical and political underpinnings and drivers of their work (Sayer, 2009; Sellar, 2012), this panel aims to provoke such reflexivity by considering questions pertaining to: (a) how critical occupational science might be framed or defined, (b) how it has been enacted thus far in relation to epistemology and methodology, (c) how it could be enacted in the future, (d) what might be its moral or ethical base, and (e) what it can add to the study of occupation and the capacity of the discipline to be socially and politically responsive and responsible. To promote this dialogue, each panelist will provide critical reflections on her occupational science work which has embraced a critical turn, sharing both the promises and challenges of such work. The panelists draw on various theoretical influences (e.g. Foucault, Black feminist theory, American pragmatist and neo-pragmatist thought, the capabilities approach, critical medical anthropology, globalization theory, Freirian-style pedagogies of the oppressed, and varieties of neo-Marxist and poststructuralist thinking); methodologies (e.g. critical ethnography, critical interpretive synthesis and critical discourse analysis); and substantive topic areas (e.g. aging, poverty, social justice, and international development). Thus, the panel presentation will both address the diversity that can exist within critical occupational science and also point to key anchors and defining features. Following these presentations, the session will be opened to dialogue with the audience to further refine the meaning and possibilities of critical occupational science. Key words:collective reflexivity, critical paradigm, ethic

Ethnicity and attitudes towards life sustaining technology

The ethical and legal implications of decisions to withhold and withdraw life support have been widely debated. Making end-of-life decisions is never easy, and when the cultural background of doctor and patient differ, communication about these issues may become even more difficult. In this study, we examined the attitudes of people aged 65 and older from different ethnic groups toward forgoing life support. To this end, we conducted a survey of 200 respondents from each of four ethnic groups: European-American, African-American, Korean-American and Mexican-American (800 total), followed by in-depth ethnographic interviews with 80 respondents. European-Americans were the least likely to both accept and want life-support (pSurvey Interview Ethnicity Ethics End-of-life decision making