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"What do you mean 'what's wrong with her?'": stigma and the lives of families of children with disabilities

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  • Green, Sara E.

Abstract

This study extends the application of modified labeling theory to the experience of courtesy stigma in families of children with disabilities. The study utilizes a mixed methods approach that integrates quantitative analysis of survey data, qualitative analysis of interactive interviews and personal narrative. A survey of 81 mothers of children with disabilities in Florida, USA, is used to test hypotheses related to the impact of perceived stigma on emotional and social outcomes for mothers and children. The author's experience as the mother of a child with cerebral palsy and interactive interviews with seven other mothers with similar experiences are used to contextualize, humanize and help interpret the quantitative findings. Results indicate that controlling for the effects of salient maternal and child characteristics and the daily hassles of caring for a child with a disability (objective burden), maternal perceptions that individuals with disabilities are devalued and discriminated against (stigmatized) by others increases maternal distress (subjective burden). Findings also indicate that children of mothers who perceive high levels of stigma interact less frequently with age peers in the informal settings of homes and neighborhoods.

Suggested Citation

  • Green, Sara E., 2003. ""What do you mean 'what's wrong with her?'": stigma and the lives of families of children with disabilities," Social Science & Medicine, Elsevier, vol. 57(8), pages 1361-1374, October.
    • Handle: RePEc:eee:socmed:v:57:y:2003:i:8:p:1361-1374
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    Citations

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    Cited by:

    1. Green, Sara Eleanor, 2007. ""We're tired, not sad": Benefits and burdens of mothering a child with a disability," Social Science & Medicine, Elsevier, vol. 64(1), pages 150-163, January.
    2. Trani, Jean-Francois & Moodley, Jacqueline & Anand, Paul & Graham, Lauren & Thu Maw, May Thu, 2020. "Stigma of persons with disabilities in South Africa: Uncovering pathways from discrimination to depression and low self-esteem," Social Science & Medicine, Elsevier, vol. 265(C).
    3. Leiter, Valerie, 2007. ""Nobody's just normal, you know": The social creation of developmental disability," Social Science & Medicine, Elsevier, vol. 65(8), pages 1630-1641, October.
    4. Zeried Ferial M & Sedeeq Abeer & Osuagwu Uchechukwu, 2019. "Influence of Parenting Style on the Visually Impaired Adolescents and Their Self-Esteem - Analysis Based on A Saudi Population," Biomedical Journal of Scientific & Technical Research, Biomedical Research Network+, LLC, vol. 19(5), pages 14607-14613, July.
    5. Mendes, Álvaro & Sousa, Liliana & Sequeiros, Jorge & Clarke, Angus, 2017. "Discredited legacy: Stigma and familial amyloid polyneuropathy in Northwestern Portugal," Social Science & Medicine, Elsevier, vol. 182(C), pages 73-80.
    6. Carina Nygård & Anne Clancy, 2018. "Unsung heroes, flying blind—A metasynthesis of parents’ experiences of caring for children with special health‐care needs at home," Journal of Clinical Nursing, John Wiley & Sons, vol. 27(15-16), pages 3179-3196, August.
    7. Mak, Winnie W.S. & Kwok, Yvonne T.Y., 2010. "Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong," Social Science & Medicine, Elsevier, vol. 70(12), pages 2045-2051, June.
    8. Dominique H. Como & Lucía I. Floríndez & Christine F. Tran & Sharon A. Cermak & Leah I. Stein Duker, 2020. "Examining unconscious bias embedded in provider language regarding children with autism," Nursing & Health Sciences, John Wiley & Sons, vol. 22(2), pages 197-204, June.
    9. Donkor, Ernestina S. & Sandall, Jane, 2007. "The impact of perceived stigma and mediating social factors on infertility-related stress among women seeking infertility treatment in Southern Ghana," Social Science & Medicine, Elsevier, vol. 65(8), pages 1683-1694, October.
    10. Mabel Oti-Boadi, 2017. "Exploring the Lived Experiences of Mothers of Children With Intellectual Disability in Ghana," SAGE Open, , vol. 7(4), pages 21582440177, December.
    11. Gregorius Abanit Asa & Nelsensius Klau Fauk & Paul Russell Ward & Lillian Mwanri, 2020. "The psychosocial and economic impacts on female caregivers and families caring for children with a disability in Belu District, Indonesia," PLOS ONE, Public Library of Science, vol. 15(11), pages 1-16, November.
    12. Magdalena Wojnowska-Heciak & Jakub Heciak & Adam Kłak, 2022. "Concrete Paving Slabs for Comfort of Movement of Mobility-Impaired Pedestrians—A Survey," IJERPH, MDPI, vol. 19(6), pages 1-17, March.
    13. Frank Tian-Fang Ye & Kuen-Fung Sin & Xiaozi Gao, 2021. "Subjective Well-Being among Parents of Children with Special Educational Needs in Hong Kong: Impacts of Stigmatized Identity and Discrimination under Social Unrest and COVID-19," IJERPH, MDPI, vol. 19(1), pages 1-13, December.
    14. Trani, Jean-Francois & Ballard, Ellis & Peña, Juan B., 2016. "Stigma of persons with disabilities in Afghanistan: Examining the pathways from stereotyping to mental distress," Social Science & Medicine, Elsevier, vol. 153(C), pages 258-265.
    15. Jean-Francois Trani & Kyle A. Pitzer & Juanita Vasquez Escallon & Parul Bakhshi, 2022. "Access to Services from Persons with Disabilities in Afghanistan: Is Community Based Rehabilitation Making a Difference?," IJERPH, MDPI, vol. 19(10), pages 1-26, May.
    16. Manago, Bianca & Davis, Jenny L. & Goar, Carla, 2017. "Discourse in Action: Parents’ use of medical and social models to resist disability stigma," Social Science & Medicine, Elsevier, vol. 184(C), pages 169-177.
    17. Davis, Jenny L. & Goar, Carla & Manago, Bianca & Reidinger, Bobbi, 2018. "Distribution and disavowal: Managing the parental stigma of Children's weight and weight loss," Social Science & Medicine, Elsevier, vol. 219(C), pages 61-69.

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