Between Heroism and Marginality: Experiences of Mothers of Children with Intellectual Disabilities
Abstract
The article is analyzed the experiences of mothers who gave birth to children with intellectual disabilities during the 1970s and 1990s in Ukraine. The topicality is determined by the fact that almost no similar research has been conducted in Ukraine. The novelty of the publication is that the context of disability policy in Soviet times and its impact on public perceptions of intellectual disability have not been analyzed. The theoretical and methodological basis of the study is the theory of social constructivism. The empirical research was conducted by qualitative methods: semi-structured in-depth interviews and ethnographic included observation in Kyiv, Lviv and Lviv region during 2019-2021. Due to the qualitative content analysis, a number of typical experiences were identified for mothers who already have adult children with intellectual disabilities: meeting with health professionals as bearers of symbolic power to exclude children with (intellectual) disabilities and their families from social space and social interactions, stigmatization of a child with a disability and his / her family, permanent care of a child with an intellectual disability, financial difficulties, rethinking the disability of a child and his / her motherhood in social activities and social inclusion.
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Llewellyn, G., McConnell, D., Cant, R., Westbrook, M. (1999) Support network of mothers with an intellectual disability: An exploratory study. Journal of Intellectual & Developmental Disability. 24(1), pp. 7-26. DOI: https://doi.org/10.1080/13668259900033851(date of access: 31.05.2021).Marks, D. (1996) ‘Models of disability’ Disability and Rehabilitation. 19(3), pp. 85-91. DOI: https://doi.org/10.3109/09638289709166831 (date of access: 31.05.2021).
Olsson, M. B., Hwang, C. P. (2001) ‘Depression in mothers and fathers of children with intellectual disability’ Journal of Intellectual Disability Research. 5(6), pp. 535-543. DOI: 10.1046/j.1365-2788.2001.00372.x (date of access: 31.05.2021).
Oti-Boadi, M. (2017) ‘Exploring the Lived Experiences of Mothers of Children With Intellectual Disability in Ghana’ SAGE Open. № 7(4), pp. 1-12. DOI: https://doi.org/10.1177/2158244017745578 (date of access: 31.05.2021).
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Sen, E., Yurtsever, S. (2007) ‘Difficulties Experienced by Families With Disabled Children’ JSPN. 12(4), pp. 238-252. DOI: https://doi.org/10.1111/j.1744-6155.2007.00119.x (date of access: 31.05.2021).
Shearn, J., Todd, S. (2001) ‘Maternal Employment and Family Responsibilities: the Perspectives of Mothers of Children with Intellectual Disabilities’ Journal of Applied Research in Intellectual Disabilities. 13(3), pp. 109-131. DOI: https://doi.org/10.1046/j.1468-3148.2000.00021.x (date of access: 31.05.2021).
Whitaker, S. (2013) Intellectual Disability. An Inability to Cope with an Intellectually Demanding World. London: Palgrave Macmillan. 207 p.
