Between (self-)exclusion and social integration – analysing the process of reconstructing identity of parents over the life stages of a child with intellectual disability
DOI:
https://doi.org/10.26485/PS/2021/70.3/1Keywords:
disability, family, child, identity, qualitative researchAbstract
The paper is devoted to creating and articulating the identity of parents of children with intellectual disability. In this work, I have sought to deconstruct identity reconstruction in parents of children with intellectual disability and learn about the ways these parents perceive the world around them, making sense of certain elements, which in turn provides a basis for them to take action to shape their living space. Therefore, to embed the analysis in a broader theoretical perspective, I refer to the crucial assumptions of research on social life that derive from the theory of symbolic interactionism. The research material came from interviews about the parents’ personal experiences. The data were analysed according to the grounded methodology principles.
References
Barnes Colin, Geoff Mercer. 1997. Doing disability research. Leeds: The Disability Press.
Beresford Bryony, Parvaneh Rabiee, Patricia Sloper. 2007. Outcomes for parents with disabled children. Research Works 2007-03, Social Policy Research Unit. York: University of York.
Bosteels Sigrid, Geert van Hove, Michel Vandenbroeck. 2012. “The rollercoaster of experiences: Becoming the parent of a deaf child”. Disability & Society 27 (7): 983–996.
Burke Peter J. 2003. Relationships among multiple identities. In: Advances in identity theory & esearch. P.J. Burke, T.J. Owens, R.T. Serpe, P.A. Thoits (eds.), 195–214. New York: Kluwer Academic/Plenum.
Charmaz Kathy. 2006. Constructing grounded theory. A practical guide through qualitative analysis. Thousand Oaks, CA: Sage Publications.
Cronin Mary. 2018. “’Special mothers’ in Ireland: Gender, identity and the social construction of caring for a relative with an intellectual disability”. International Journal of Care and Caring 2(4): 575–580.
Glaser Barney G. 1978. Theoretical sensitivity. Advances in the methodology of grounded theory. Mill Valley, CA: The Sociology Press.
Glaser Barney G., Anselm L. Strauss. 1967. The discovery of grounded theory. Strategies for qualitative research. Chicago: Aldine.
Gray David E. 2002. “«Everybody just freezes. Everybody is just embarrassed»: Felt and enacted sigma among parents of children with high functioning autism». Sociology of Health and Illness 24 (6): 734–749.
Hodapp Robert M. 2007. “Families of persons with Down syndrome: New perspectives, findings, and research and service needs”. Mental Retardation and Developmental Disabilities Research Reviews 13(3): 279–287.
Hodapp Robert M., Laraine M. Glidden, Ann P. Kaiser. 2005. “Siblings of persons with disabilities: Toward a research agenda”. Mental Retardation 43 (5): 334–338.
Holland Kate R., Warwick Blood. 2008. Carers’ perspectives on caring: A qualitative analysis of open-ended eesponses to the Carer Health and Wellbeing Index Survey 2007. Deakin, ACT: Carers Australia.
Hughes Nic, Louise Locock, Sue Ziebland. 2013. “Personal identity and the role of «carer» among relatives and friends of people with multiple sclerosis”. Social Science and Medicine 96: 78–85.
Konieczna Agnieszka. 2012. Dążenia rodziców do aktywizacji zawodowej dzieci z niepełnosprawnością – lęk o przyszłość. In: Aktywność zawodowa osób z niepełnosprawnością. D. Tomczyszyn, W. Romanowicz (eds.), 277–279. Biała Podlaska: Wyd. PSW.
Kościelska Małgorzata. 1995. Oblicza upośledzenia. Warszawa: PWN.
Lewis Suzan, Carolyn Kagan, Patricia Heaton, Maureen Cranshaw. 1999. “Economic and psychological benefits from employment: The experiences and perspectives of mothers of disabled children”. Disability and Society 14(4): 561–575.
Miles Matthew B., Michael Huberman, Johnny Saldana. 2014. Qualitative data analysis: A method sourcebook. Sage Publications.
Niedbalski Jakub. 2019. „Realizowanie ról rodzicielskich i konstruowanie tożsamości rodziców dziecka z niepełnosprawnością intelektualną”. Studia Socjologiczne 234(3): 135–170.
Niedbalski Jakub, Izabela Ślęzak. 2012. „Analiza danych jakościowych przy użyciu programu NVivo a zastosowanie procedur metodologii teorii ugruntowanej”. Przegląd Socjologii Jakościowej 8(1): 126–165.
O’Connor Deborah. 2007. “Self-identifying as a caregiver: Exploring the positioning process”. Journal of Aging Studies 21: 165–174.
Orsmond Gael I., Marsha M. Seltzer, Marty Krauss, Jinkuk W. Hong. 2003. “Behavior problems in adults with mental retardation and maternal well-being: Examination of the direction of effects”. American Journal on Mental Retardation 108 (4):257–271.
Pavia Teresa M., Marlys J. Mason. 2004. “The reflexive relationship between consumer behawior and adaptive coping”. Journal of Consumer Research 31(2): 441–54.
Phyllis Solomon, Jeffrey Draine.1995. “Subjective burden among family members of mentally ill adults: Relation to stress, coping and adoption”. American Journal of Orthopsychiatry 65(3): 419–427.
Riemann Gerhard, Fritz Schütze. 1992. „«Trajektoria» jako podstawowa koncepcja teoretyczna w analizach cierpienia i bezładnych procesów społecznych”. Kultura i Społeczeństwo 36(2): 89–110.
Rix Jonathan, Alice Paige-Smith. 2008. “«A different head?» Parental agency and early intervention”. Disability & Society 23(3): 211–221.
Ryan Sara, Katherine Runswick-Cole. 2008. “Repositioning mothers: Mothers, disabled children and disability studies”. Disability and Society 23(3): 199–201.
Sałkowska Marta. 2015. Matka Downa. Piętno – znaczenia – strategie. Kraków: Zakład Wydawniczy “NOMOS”.
Schütze Fritze. 1997. „Trajektoria cierpienia jako przedmiot badań socjologii interpretatywnej”. Studia Socjologiczne 1: 11–56.
Shearn Julia, Stuart Todd. 2000. “Maternal employment and family responsibilities: The perspective of mothers of children with intellectual disabilities”. Journal of Applied Research in Intellectual Disabilities 13(3): 109–31.
Singh Shailen. 2019. “I am who I need to be: Reflections on parental identity development from a father of a child with disabilities”. Disability & Society 34(5): 837–841.
Stengler-Wenzke Katarina, Johanna Trosbach, Sandra Dietrich, Matthias C. Angermeyer. 2004. “Experience of stigmatization by relatives of patients with obsessive compulsive disorder”. Archives of Psychiatric Nursing 18(3): 88–96.
Strauss Anselm L., Juliet Corbin. 1990. Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks (CA): Sage.
Todd Stuart, Julia Shearn. 1996a. “Struggles with time: The careers of Parents with adult sons and daughters with learning disabilities”. Disability & Society 11(3): 379–402.
Todd Stuart, Julia Shearn. 1996b. “Time and the person: The impact of support services on the lives of parents of adults with intellectual disabilities”. Journal of Applied Research in Intellectual Disabilities 9: 40–60.
Tomczyszyn Dorota. 2015. Rola matki i ojca w rodzinie z dzieckiem z niepełnosprawnością intelektualną. Biała Podlaska: Wydawnictwo PSW JPII
Walden Sarah, Nancy Pistrang, Theresa Joyce. 2000. “Parents of adults with intellectual disabilities: Quality of life and experiences of caring”. Journal of Applied Research in Intellectual Disabilities 13: 62–76.
Ytterhus Borgunn, Christian Wendelborg, Hege Lundeby. 2008. “Managing turning points and transitions in childhood and parenthood: Insights from families with disabled children in Norway”. Disability & Society 23(6): 625–636.
Zakrzewska-Manterys Elżbieta. 2010. Upośledzeni umysłowo. Poza granicami człowieczeństwa.Warszawa: Wydawnictwo Uniwersytetu Warszawskiego.
