We examine how 150 Latino mothers of young children with developmental disabilities use narrative... more We examine how 150 Latino mothers of young children with developmental disabilities use narratives to express and create self-understandings vis-à-vis their child. The purpose is twofold: (a) to introduce narrative as a tool that people use to make sense of disability, and (b) to demonstrate how these mothers draw on cultural beliefs and the narrative form to construct meanings of self in relationship to disability. An analysis of spontaneous narratives of self and disability reveal that the majority of mothers portrayed themselves as good mothers in line with larger cultural notions, and viewed their child as bringing about positive transformations in their lives. We end by suggesting ways that narrative analysis could be used in future research and practice.
Tij songs, a genre composed and performed primarily by high caste Nepalese women, have for years ... more Tij songs, a genre composed and performed primarily by high caste Nepalese women, have for years voiced a critical commentary on male privilege and the patriarchal practices of a Brahmanical society. Since the Pro-Democracy Movement in 1990, the critique has turned from the field of domestic relations to the world of government and politics, and has become increasingly revolutionary in content. This change offers an unusual view of one of the bases of human agency: a creative intelligence -possessed by both individuals and groups- that is capable of responding to changing conditions yet, at the same time, bound by history. Inspired by activity theory, a theory of cultural and cognitive production, the AA. move between the limited, over-wrought idealizations of human agency that either disregard social and cultural structuring or, on the other pole, ignore the productive, responsive abilities of human
Genomic research has rapidly expanded its scope and ambition over the past decade, promoted by bo... more Genomic research has rapidly expanded its scope and ambition over the past decade, promoted by both public and private sectors as having the potential to revolutionize clinical medicine. This promissory bioeconomy of genomic research and technology is generated by, and in turn generates, the hopes and expectations shared by investors, researchers and clinicians, patients, and the general public alike. Examinations of such bioeconomies have often focused on the public discourse, media representations, and capital investments that fuel these "regimes of hope," but also crucial are the more intimate contexts of small-scale medical research, and the private hopes, dreams, and disappointments of those involved. Here we examine one local site of production in a university-based clinical research project that sought to identify novel cancer predisposition genes through whole genome sequencing in individuals at high risk for cancer. In-depth interviews with 24 adults who donated s...
Fragile X syndrome, diagnosed by Fragile X Mental Retardation 1 (FMR1) DNA testing, is the most c... more Fragile X syndrome, diagnosed by Fragile X Mental Retardation 1 (FMR1) DNA testing, is the most common single-gene cause of inherited intellectual disability. The expanded CGG mutation in the FMR1 gene, once thought to have clinical significance limited to fragile X syndrome, is now well established as the cause for other fragile X–associated disorders including fragile X–associated primary ovarian insufficiency and fragile X–associated tremor ataxia syndrome in individuals with the premutation (carriers). The importance of early diagnostic and management issues, in conjunction with the identification of family members at risk for or affected by FMR1 mutations, has led to intense discussion about the appropriate timing for early identification of FMR1 mutations. This review includes an overview of the fragile X–associated disorders and screening efforts to date, and discussion of the advantages and barriers to FMR1 screening in newborns, during childhood, and in women of reproductiv...
We interviewed 200 Latino parents (50 Mexican couples and 50 Puerto Rican couples living in the U... more We interviewed 200 Latino parents (50 Mexican couples and 50 Puerto Rican couples living in the U. S.) of young children with disabilities to determine the extent to which they were aware of, used, and were satisfied with services for them and their children. We also examined the pursuit of alternative treatments and the relationship between child and family variables and service awareness, use, and satisfaction. A high degree of overall awareness was found, but in contrast with previous literature with non-Latino families, only a moderate degree of satisfaction was found. Mothers were more aware of and perceived use of more services than fathers. With a few exceptions, family and child variables bore little relationship to awareness, use, or satisfaction with services. No families pursued alternative treatments as their primary source of help, although several did use them in a minor way. We believe that program variables (such as having materials in Spanish, a translator, a key person who helps parents navigate the service system, and a culturally-sensitive orientation) are more likely determinants of service use and satisfaction than family factors alone.
We examine how 150 Latino mothers of young children with developmental disabilities use narrative... more We examine how 150 Latino mothers of young children with developmental disabilities use narratives to express and create self-understandings vis-à-vis their child. The purpose is twofold: (a) to introduce narrative as a tool that people use to make sense of disability, and (b) to demonstrate how these mothers draw on cultural beliefs and the narrative form to construct meanings of self in relationship to disability. An analysis of spontaneous narratives of self and disability reveal that the majority of mothers portrayed themselves as good mothers in line with larger cultural notions, and viewed their child as bringing about positive transformations in their lives. We end by suggesting ways that narrative analysis could be used in future research and practice.
Tij songs, a genre composed and performed primarily by high caste Nepalese women, have for years ... more Tij songs, a genre composed and performed primarily by high caste Nepalese women, have for years voiced a critical commentary on male privilege and the patriarchal practices of a Brahmanical society. Since the Pro-Democracy Movement in 1990, the critique has turned from the field of domestic relations to the world of government and politics, and has become increasingly revolutionary in content. This change offers an unusual view of one of the bases of human agency: a creative intelligence -possessed by both individuals and groups- that is capable of responding to changing conditions yet, at the same time, bound by history. Inspired by activity theory, a theory of cultural and cognitive production, the AA. move between the limited, over-wrought idealizations of human agency that either disregard social and cultural structuring or, on the other pole, ignore the productive, responsive abilities of human
Genomic research has rapidly expanded its scope and ambition over the past decade, promoted by bo... more Genomic research has rapidly expanded its scope and ambition over the past decade, promoted by both public and private sectors as having the potential to revolutionize clinical medicine. This promissory bioeconomy of genomic research and technology is generated by, and in turn generates, the hopes and expectations shared by investors, researchers and clinicians, patients, and the general public alike. Examinations of such bioeconomies have often focused on the public discourse, media representations, and capital investments that fuel these "regimes of hope," but also crucial are the more intimate contexts of small-scale medical research, and the private hopes, dreams, and disappointments of those involved. Here we examine one local site of production in a university-based clinical research project that sought to identify novel cancer predisposition genes through whole genome sequencing in individuals at high risk for cancer. In-depth interviews with 24 adults who donated s...
Fragile X syndrome, diagnosed by Fragile X Mental Retardation 1 (FMR1) DNA testing, is the most c... more Fragile X syndrome, diagnosed by Fragile X Mental Retardation 1 (FMR1) DNA testing, is the most common single-gene cause of inherited intellectual disability. The expanded CGG mutation in the FMR1 gene, once thought to have clinical significance limited to fragile X syndrome, is now well established as the cause for other fragile X–associated disorders including fragile X–associated primary ovarian insufficiency and fragile X–associated tremor ataxia syndrome in individuals with the premutation (carriers). The importance of early diagnostic and management issues, in conjunction with the identification of family members at risk for or affected by FMR1 mutations, has led to intense discussion about the appropriate timing for early identification of FMR1 mutations. This review includes an overview of the fragile X–associated disorders and screening efforts to date, and discussion of the advantages and barriers to FMR1 screening in newborns, during childhood, and in women of reproductiv...
We interviewed 200 Latino parents (50 Mexican couples and 50 Puerto Rican couples living in the U... more We interviewed 200 Latino parents (50 Mexican couples and 50 Puerto Rican couples living in the U. S.) of young children with disabilities to determine the extent to which they were aware of, used, and were satisfied with services for them and their children. We also examined the pursuit of alternative treatments and the relationship between child and family variables and service awareness, use, and satisfaction. A high degree of overall awareness was found, but in contrast with previous literature with non-Latino families, only a moderate degree of satisfaction was found. Mothers were more aware of and perceived use of more services than fathers. With a few exceptions, family and child variables bore little relationship to awareness, use, or satisfaction with services. No families pursued alternative treatments as their primary source of help, although several did use them in a minor way. We believe that program variables (such as having materials in Spanish, a translator, a key person who helps parents navigate the service system, and a culturally-sensitive orientation) are more likely determinants of service use and satisfaction than family factors alone.
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Papers by Debra Skinner