Re‐situating information poverty: Information marginalization and parents of individuals with disabilities

This article outlines a constructivist grounded theory (Charmaz, 2014) study of information poverty among a group of mothers of individuals with Down syndrome and/or Autism Spectrum Disorders (ASD) from a critical perspective, drawing on concepts from critical disability theory, critical race theory, and critical work within information and library science. The researchers gathered interview data from 24 mothers. Resulting data were inductively analyzed using Chatman's (1996) theory of information poverty. We propose information marginalization as a complimentary concept to describe the contextual conditions that contribute to a range of defensive information behaviors and suggest that assessment of these contextual conditions be a part of the system design process. This study has implications for the development and design of systems and service models intended to provide access to information and services for individuals with disability and contributes to a critical literature on information poverty.

[1]  Anne Goulding,et al.  Information Poverty or Overload? , 2001, J. Libr. Inf. Sci..

[2]  W. Wiegand Tunnel Vision and Blind Spots: What the past Tells Us about the Present; Reflections on the Twentieth-Century History of American Librarianship , 1999, The Library Quarterly.

[3]  F. X. Sligo,et al.  The knowledge - behavior gap in use of health information , 2000, J. Am. Soc. Inf. Sci..

[4]  Johannes J. Britz,et al.  To Know or not to Know: A Moral Reflection on Information Poverty , 2004, J. Inf. Sci..

[5]  Sharon M. Kolb Grounded theory and the constant comparative method : valid research strategies for educators , 2012 .

[6]  Christopher Guy Walker,et al.  Seeking Information: A study of the use and understanding of information by parents of young children , 2009 .

[7]  Michelle Putnam,et al.  Conceptualizing Disability , 2005 .

[8]  Todd Honma Trippin’ Over the Color Line: The Invisibility of Race in Library and Information Studies , 2005 .

[9]  Elfreda A. Chatman,et al.  The Impoverished Life-World of Outsiders , 1996, J. Am. Soc. Inf. Sci..

[10]  A. Kellerman,et al.  The Constitution of Society : Outline of the Theory of Structuration , 2015 .

[11]  L. Zwaigenbaum,et al.  A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome. , 2006, Child: care, health and development.

[12]  Reijo Savolainen Everyday life information seeking: Approaching information seeking in the context of “way of life” , 1995 .

[13]  Elfreda A. Chatman,et al.  The Information World of Low-Skilled Workers. , 1987 .

[14]  Amelia N. Gibson A better place? Factors in community assessment for parents of children with Down syndrome , 2014, ASIST.

[15]  Kim M. Thompson,et al.  Furthering understanding of information literacy through the social study of information poverty , 2007 .

[16]  Amelia N. Gibson,et al.  A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder , 2017, Journal of autism and developmental disorders.

[17]  W. Orlikowski The Duality of Technology: Rethinking the Concept of Technology in Organizations , 2014 .

[18]  T. Childers,et al.  The Information-Poor in America. , 1975 .

[19]  Mairian Corker Differences, Conflations and Foundations: The limits to 'accurate' theoretical representation of disabled people's experience? , 1999 .

[20]  Twitter and Tear Gas: The Power and Fragility of Networked Protest , 2019, Peace Review.

[21]  Liangzhi Yu,et al.  Understanding information inequality : Making sense of the literature of the information and digital , 2006 .

[22]  Ian Ruthven,et al.  Escaping Information Poverty through Internet Newsgroups , 2011, ICWSM.

[23]  Paul T. Jaeger,et al.  Information Worlds: Social Context, Technology, and Information Behavior in the Age of the Internet , 2010 .

[24]  K. Crenshaw Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics , 1989 .

[25]  Kay Mathiesen,et al.  Human rights as a topic and guide for LIS research and practice , 2015, J. Assoc. Inf. Sci. Technol..

[26]  Rey Catabay Individuals with Disabilities Education Act , 2017 .

[27]  Heather Hill,et al.  Disability and accessibility in the library and information science literature: A content analysis , 2013 .

[28]  K. Charmaz,et al.  Constructing Grounded Theory , 2014 .

[29]  S Hollander,et al.  The impact of consumer health information provided by libraries: the Delaware experience. , 1997, Bulletin of the Medical Library Association.

[30]  Susan Leigh Star,et al.  Institutional Ecology, `Translations' and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39 , 1989 .

[31]  Devon L. Greyson Health information practices of young parents , 2017, J. Documentation.

[32]  Hannah Lebovits Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor , 2018, Public Integrity.

[33]  D. Dunn,et al.  Person-first and identity-first language: Developing psychologists' cultural competence using disability language. , 2015, The American psychologist.

[34]  David K. Allen,et al.  Sociospatial context and information behavior: Social exclusion and the influence of mobile information technology , 2012, J. Assoc. Inf. Sci. Technol..

[35]  Miriam E. Sweeney,et al.  Changing Course: Collaborative Reflections of Teaching/Taking "Race, Gender, and Sexuality in the Information Professions" , 2014 .

[36]  Danah Boyd,et al.  "Keep it secret, keep it safe": Information poverty, information norms, and stigma , 2013, J. Assoc. Inf. Sci. Technol..

[37]  Diane H. Sonnenwald,et al.  A research method to investigate information seeking using the concept of information horizons: an example from a study of lower socio-economic students' information seeking behaviour , 2001 .

[38]  Safiya Noble,et al.  Algorithms of Oppression , 2018 .

[39]  T. Samek,et al.  Librarianship and human rights , 2007 .

[40]  S. Noble Algorithms of Oppression: How Search Engines Reinforce Racism , 2018 .

[41]  Elfreda A. Chatman,et al.  A Theory of Life in the Round , 1999, J. Am. Soc. Inf. Sci..

[42]  David R. Williams,et al.  Measuring social class in US public health research: concepts, methodologies, and guidelines. , 1997, Annual review of public health.

[43]  David Bawden,et al.  Conceptions of "information poverty" in LIS: a discourse analysis , 2007, J. Documentation.

[44]  SolomonPaul Discovering information behavior in sense making. I , 1997 .

[45]  E. Chatman,et al.  Knowledge Gap, Information-Seeking and the Poor , 1995 .

[46]  Matthew R. Jones,et al.  Giddens's Structuration Theory and Information Systems Research , 2008, MIS Q..

[47]  Molly Sauter Twitter and Tear Gas: The Power and Fragility of Networked Protest , 2017 .

[48]  Paul Solomon,et al.  Discovering Information Behavior in Sense Making: I. Time and Timing , 1997, J. Am. Soc. Inf. Sci..

[49]  M. Oliver,et al.  The social model of disability: thirty years on , 2013 .