Abstract
Parental involvement in the selection and implementation of children’s educational services is one of the most important tenets of the Individuals with Disabilities Education Act. However, parental involvement may be less welcome and less effectively supported in families from non-dominant groups (i.e., those with lower social status as a result of their race, ethnicity, social class, or immigrant status) compared to those with more resources. In this chapter, we explore several important conceptual tools related to diversity and stigmatization that support families’ equitable access to special education services for their young children. After reviewing how culture has typically been defined in the field of early childhood special education (ECSE), we introduce the critical sociocultural perspective and describe its clear implications for more effective parent-practitioner relations. We subsequently explore the notions of individual and institutional stigma, and show how early childhood practitioners can identify stigmatizing experiences that children with disabilities and their parents may have encountered. We then address the experience of families who are stigmatized for additional reasons other than the disability status of a family member, showing how children and families are located at the intersection of overlapping social identities rather than situated within a single homogenous racial, ethnic, or gender category. We conclude the chapter with specific suggestions for service providers to assist them in addressing stigmatization of individuals with autism, particularly those who are members of non-dominant groups, in the hope of moving the field of ECSE closer to its promise of a free, appropriate, public education for all.
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References
Abrego, L. J. (2014). Sacrificing families: Navigating laws, labor, and love across borders. Stanford, CA: Stanford University Press.
Ayers, W. (2010). To teach: The journey of a teacher. New York, NY: Teachers College Press.
Baca Zinn, M., & Wells, B. (2005). Diversity within Latino families: New lessons for family social science. In A. Skolnick & S. Jerome (Eds.), Family in transition (pp. 420–445). Boston, MA: Pearson.
Banks, J. A. (2013). An introduction to multicultural education (5th ed.). Upper Saddle River, NJ: Pearson.
Baquedano-López, P., Alexander, R. A., & Hernandez, S. J. (2013). Equity issues in parental and community involvement in schools: What teacher educators need to know. Review of Research in Education, 37(1), 149–182. https://doi.org/10.3102/0091732X12459718
Benson, P. R. (2012). Network characteristics, perceived social support, and psychological adjustment in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 42, 2597–2610.
Bourdieu, P., & Wacquant, L. J. D. (1992). An invitation to reflexive sociology. Chicago, IL: The University of Chicago Press.
Centers for Disease Control and Prevention. (2014). Prevalence of autism spectrum disorder among children aged 8 years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010. Morbidity and Mortality Weekly Report, 63, 1–21 Retrieved from: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm
Chaidez, V., Hansen, R. L., & Hertz-Picciotto, I. (2012). Autism spectrum disorders in Hispanics and non-Hispanics. Autism, 16, 381–397. https://doi.org/10.1177/1362361311434787
Cohen, S. R., Holloway, S. D., Domínguez-Pareto, I., & Kuppermann, M. (2013). Receiving or believing in family support? Contributors to the life quality of Latino and non-Latino families of children with ID. Journal of Intellectual Disability Research, 58, 333–345. https://doi.org/10.1111/jir.12016
Cohen, S. R., & Miguel, J. (2018). Amor and social stigma: ASD beliefs among immigrant Mexican parents. Journal of Autism and Developmental Disorders, 48.
Collins, P. H. (1994). Shifting the center: Race, class, and feminist theorizing about motherhood. In E. Nakano Glenn, G. Chang, & L Rennie Forcey (Eds.), Mothering, ideology, experience, and agency. (pp. 45-66). New York, NY: Routledge
Collins, P. H. (2000). Black feminist thought: Knowledge, consciousness, and the politics of empowerment. New York, NY: Routledge.
Cooper, C. W., Riehl, C. J., & Hasan, A. L. (2010). Leading and learning with diverse families in schools: Critical epistemology amid communities of practice. Journal of School Leadership, 20, 758–789.
Corrigan, P. W., & Miller, F. E. (2004). Shame, blame, and contamination: A review of the impact of mental illness stigma on family members. Journal of Mental Health, 13, 537–548.
Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum, 1989, 139–168.
Derman-Sparks, L., & Ramsey, P. (2011). What if all kids are white? Anti-bias multicultural education with young children and families (2nd ed.). New York, NY: Teachers College Press.
Domínguez-Pareto, I. (2014). Learning advocacy: Decentering parental involvement discourse through the experiences of Latina mothers of children with disabilities in northern California (Doctoral dissertation). University of California, Berkeley, CA.
Domínguez-Pareto, I. (2015). Gendered involvement, unequal parenthoods: Examining the role of gender in Latina mothers’ parental advocacy from an intersectional perspective. Unpublished manuscript.
Doucet, F. (2011). Parent involvement as ritualized practice. Anthropology & Education Quarterly, 42, 404–421.
Dunst, C., Trivette, C., & Hamby, D. W. (2007). Meta-analysis of family-centered helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13, 370–378.
Ferree, M. M. (2010). Filling the glass: Gender perspectives on families. Journal of Marriage and Family, 72(3), 420–439. https://doi.org/10.1111/j.1741-3737.2010.00711.x
Foucault, M. (1972). The archeology of knowledge and the discourse on language. New York, NY: Pantheon Books.
Fountain, C., & Bearman, P. (2011). Risk as social context: Immigration policy and autism in California. Sociological Forum, 26, 215–240. https://doi.org/10.1111/j.1573-7861.2011.01238.x
Free Appropriate Public Education under Section 504. (2010). Retrieved from: http://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html
Geertz, C. (1983). Local knowledge. New York, NY: Basic Books.
Giddens, A. (1991). Modernity and self-identity: Self and society in the late modern age. Stanford, CA: Stanford University Press.
Gilman, S. (2007). Including the child with special needs: Learning from Reggio Emilia. Theory Into Practice, 46, 23–31.
Gjerde, P. (2004). Culture, power, and experience: Toward a person-centered cultural psychology. Human Development, 47, 138–157.
Goffman, E. (1963). Behavior in public places. New York, NY: Free Press.
Gray, D. (1993). Perceptions of stigma: The parents of autistic children. Sociology of Health and Illness, 15, 102–120.
Green, S., Davis, C., Karshmer, E., Marsh, P., & Straight, B. (2005). Living stigma: The impact of labeling, stereotyping, separation, status loss, and discrimination in the lives of individuals with disabilities and their families. Sociological Inquiry, 75, 197–215.
Grinker, R. R. (2007). Unstrange minds: Remapping the world of autism. Cambridge, MA: Basic Books.
Grinker, R. R., Kang-Yi, C. D., Ahmann, C., Beidas, R. S., Lagman, A., & Mandell, D. (2015). Cultural adaptation and translation of outreach materials on autism spectrum disorder. Journal of Autism and Developmental Disorders, 45, 2329–2336. https://doi.org/10.1007/s10803-015-2397-6
Holloway, S. D. (2010). Women and family in contemporary Japan. New York, NY: Cambridge University Press.
Holton, A. E., Farrell, L. C., & Fudge, J. L. (2014). A threatening space: Stigmatization and the framing of autism in the news. Communication Studies, 65, 189–207.
Kalyanpur, M., & Harry, B. (1999). Culture in special education: Building a posture of reciprocity in parent-professional relationships. Baltimore, MD: Brookes Publishing Company.
Kuh, L. P., LeeKeenan, D., Given, H., & Beneke, M. R. (2016). Moving beyond anti-bias activities: Supporting the development of anti-bias practices. Young Children, 71, 58–65.
Lareau, A. (2000). Home advantage: Social class and parental intervention in elementary education. Lanham, MA: Rowman & Littlefield Publishers.
Lareau, A., & Munoz, V. L. (2012). “You’re not going to call the shots”: Structural conflicts between the principal and the PTO at a suburban public elementary school. Sociology of Education, 85(3), 201–218. https://doi.org/10.1177/0038040711435855
Lave, J., & Wenger, E. (1991). Situated learning: Legitimate peripheral participation (19th ed.). New York, NY: Cambridge University Press.
Lightfoot, D. (2004). “Some parents just don’t care”: Decoding the meanings of parental involvement in urban schools. Urban Education, 39(1), 91–107. https://doi.org/10.1177/0042085903259290
Leigh, J. P., Grosse, S. D., Cassady, D., Melnikow, J., & Hertz-Picciotto, I. (2016). Spending by california’s department of developmental services for persons with autism across demographic and expenditure categories, PLoS ONE 11: e0151970 https://doi.org/10.1371/journal.pone.0151970
Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385.
Lorde, A. (2007). Sister outsider: Essays and speeches by Audre Lorde. Berkeley, CA: Crossing Press.
McHatton, P. A., & Correa, V. (2005). Stigma and discrimination: Perspectives from Mexican and Puerto Rican mothers of children with special needs. Topics in Early Childhood Special Education, 25(3), 131–142. https://doi.org/10.1177/02711214050250030101
Moore, M. (2011). Invisible families: Gay identities, relationships, and motherhood among Black women. Berkeley, CA: University of California Press, Ltd.
Mukolo, A., Heflinger, A., & Wallston, K. A. (2010). The stigma of childhood mental disorders: A conceptual framework. Journal of the American Academy of Child and Adolescent Psychiatry, 49, 92–198.
Nasir, N. S., & Hand, V. M. (2006). Exploring sociocultural perspectives on race, culture, and learning. Review of Educational Research, 76, 449–475.
Ong-Dean, C. (2009). Distinguishing disability: Parents, privilege, and special education. Chicago, IL: University of Chicago Press.
Oono, I. P., Honey, E. J., & McConachie, H. (2013). Parent-mediated early intervention for young children with autism spectrum disorder. Evidence-Based Child Health, 8, 2380–2479.
Peisner-Feinberg, E. S., Burchinal, M. R., Clifford, R. M., Culkin, M. L., Howes, C., Kagan, S. L., & Yazejian, N. (2001). The relation of preschool child-care quality to children’s cognitive and social developmental trajectories through second grade. Child Development, 72, 1534–1553.
Richardson, S. S., Daniels, C. R., Gillman, M. W., Golden, J., Kukla, R., Kuzawa, C., & Rich-Edwards, J. (2014). Society: Don’t blame the mothers. Nature, 512, 131–132. https://doi.org/10.1038/512131a
Rinaldi, C. (1998). Projected curriculum constructed through documentation—progettazione: An interview with Lilla Gandini. In C. Edwards, L. Gandini, & G. Foreman (Eds.), The hundred languages of children: The Reggio Emilia approach—advanced reflections (pp. 113–121). Greenwich, CT: Ablex.
SB 946, California Government Code, § Section 121022 et seq. (2011).
Shore, B. (1996). Culture in mind: Cognition, culture and the problem of meaning. New York, NY: Oxford University Press.
Skinner, D., & Weisner, T. (2007). Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 302–312.
Trainor, A. A. (2010a). Diverse approaches to parent advocacy during special education home – school interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47. https://doi.org/10.1177/0741932508324401
Trainor, A. A. (2010b). Reexamining the promise of parent participation in special education: An analysis of cultural and social capital. Anthropology & Education Quarterly, 41(3), 245–263. https://doi.org/10.1111/j.1548-1492.2010.01086.x.245
Trivette, C., & Dunst, C. (2000). Recommended practices in family-based practices. In S. Sandall, M. E. McLean, & B. J. Smith (Eds.), DEC recommended practices in early intervention/early childhood special education (pp. 39–44). Longmont, CO: Sopris West.
Turnbull, H. R. (2005). Individuals with Disabilities Education Act reauthorization: Accountability and personal responsibility. Remedial and Special Education, 26(6), 320–326. https://doi.org/10.1177/07419325050260060201
Valencia, R. R., & Black, M. S. (2002). “Mexican Americans don’t value education!” On the basis of the myth, mythmaking, and debunking. Journal of Latinos and Education, 1, 81–103.
Valle, J. W. (2009). What mothers say about special education: From the 1960s to the present. New York, NY: Palgrave Macmillan.
Valle, J. W. (2011). Down the rabbit hole: A commentary about research on parents and special education. Learning Disability Quarterly, 34(3), 183–190. https://doi.org/10.1177/0731948711417555
Wang, M., Mannan, H., Poston, D., Turnbull, A. P., & Summers, J. A. (2004). Parents’ perceptions of advocacy activities and their impact on family quality of life. Research and Practice for Persons with Severe Disabilities, 29(2), 144–155. https://doi.org/10.2511/rpsd.29.2.144
Weisner, T. (2002). Ecocultural understanding of children’s developmental pathways. Human Development, 45, 275–281.
Wenger, E. (1998). Communities of practice: Learning, meaning, and identity. Cambridge, MA: Cambridge University Press.
Zarembo, A. (2012, May 1). California agency ripped over disparities in autism spending. Los Angeles Times. Retrieved from: http://articles.latimes.com/2012/may/01/local/la-me-0501-autism-hearing-20120501
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Holloway, S.D., Cohen, S.R., Domínguez-Pareto, I. (2018). Culture, Stigma, and Intersectionality: Toward Equitable Parent-Practitioner Relationships in Early Childhood Special Education. In: Siller, M., Morgan, L. (eds) Handbook of Parent-Implemented Interventions for Very Young Children with Autism. Autism and Child Psychopathology Series. Springer, Cham. https://doi.org/10.1007/978-3-319-90994-3_6
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