Mutual Exchange: Caregiving and Life Enhancement in Siblings of Individuals With Developmental Disabilities

Abstract

Individuals with disabilities increasingly live at home. This study focuses on experiences of adult siblings (aged 18 years and older) in the United States who have a brother or sister with an intellectual/developmental disability. It is based on qualitative survey data (n = 224). We coded narratives of siblings’ experiences and identified themes, correlating themes with demographic characteristics. The major finding was that narratives of the youngest age group (aged 18-25 years) had the highest number of direct care codes. This group of siblings also had the highest number of codes indicating that their lives were enhanced by their brother or sister. To account for this, we utilize the mutual exchange theory of care from sociology and a social model of disability. As a result, we suggest a richer theoretical understanding of care and disability that can capture these nuances, and comment on some of the historical tensions between disability studies and caregiving.

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References

Altman

B. M.

Blackwell

D. L.

(2014). Disability in U.S. Households, 2000–2010: Findings from the National Health Interview Survey. Family Relations, 63, 20-38. doi:10.1111/fare.12044

American Association on Intellectual and Developmental Disabilities. (2016). Definition of intellectual disability. Retrieved from http://aaidd.org/intellectual-disability/definition#.V41C7ZMrKRs

Aronson

(1992). Women’s sense of responsibility for the care of old people: “But who else is going to do it?” Gender & Society, 6, 8-29. doi:10.1177/089124392006001002

Barnes

Mercer

Shakespeare

(1999). Exploring disability: A sociological introduction. Malden, MA: Polity Press.

Beckett

(2007). Women, disability, care: Good neighbours or uneasy bedfellows? Critical Social Policy, 27, 360-380. doi:10.1177/0261018307078847

Blum

L. M.

(2007). Mother-blame in the Prozac nation: Raising kids with invisible disabilities. Gender & Society, 21, 202-226. doi:10.1177/0891243206298178

Blum

L. M.

(2011). “Not this big, huge, racial-type thing, but . . . ”: Mothering children of color with invisible disabilities in the age of neuroscience. Signs, 36, 941-967.

Bowen

G. A.

(2008). Naturalistic inquiry and the saturation concept: A research note. Qualitative Research, 8, 137-152. doi:10.1177/1468794107085301

Burton

S. L.

Parks

A. L.

(1994). Self-esteem, locus of control, and career aspirations of college-age siblings of individuals with disabilities. Social Work Research, 18, 178-185. doi:10.1093/swr/18.3.178

10.

Charlton

J. I.

(2000). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.

11.

Charmaz

(2006). Constructing grounded theory: A practical guide through qualitative analysis. New York, NY: Russell Sage Foundation.

12.

Collins

P. H.

(1998). It’s all in the family: Intersections of gender, race, and nation. Hypatia, 13, 62-82.

13.

Conrad

(1992). Medicalization and social control. Annual Review of Sociology, 18, 209-232.

14.

Conrad

(2007). The medicalization of society: On the transformation of human conditions into treatable disorders (1st ed.). Baltimore, MD: Johns Hopkins University Press.

15.

Cousino

M. K.

Hazen

R. A.

(2013). Parenting stress among caregivers of children with chronic illness: A systematic review. Journal of Pediatric Psychology, 38, 809-828. doi:10.1093/jpepsy/jst049

16.

Crenshaw

(1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43, 1241-1299. doi:10.2307/1229039

17.

Dew

Balandin

Llewellyn

(2008). The psychosocial impact on siblings of people with lifelong physical disability: A review of the literature. Journal of Developmental and Physical Disabilities, 20, 485-507. doi:10.1007/s10882-008-9109-5

18.

Dew

A. H.

(2011). Recognising reciprocity over the life course: Adults with cerebral palsy and their non-disabled siblings. Retrieved from https://ses.library.usyd.edu.au/handle/2123/7111

19.

Friedman

Owen

A. L.

(2016). Siblings of disabled peoples’ attitudes toward prenatal genetic testing and disability: A mixed methods approach. Disability Studies Quarterly, 36(3). https://doi.org/10.18061/dsq.v36i3.5051

20.

Fry

(2016, May 24). For first time in modern era, living with parents edges out other living arrangements for 18- to 34-year-olds. Pew Research Center. Retrieved from http://www.pewsocialtrends.org/2016/05/24/for-first-time-in-modern-era-living-with-parents-edges-out-other-living-arrangements-for-18-to-34-year-olds/

21.

Green

S. E.

(2001). “Oh, those therapists will become your best friends”: Maternal satisfaction with clinics providing physical, occupational and speech therapy services to children with disabilities. Sociology of Health & Illness, 23, 798-828. doi:10.1111/1467-9566.00276

22.

Green

S. E.

(2007). “We’re tired, not sad”: Benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64, 150-163. doi:10.1016/j.socscimed.2006.08.025

23.

Grigoryeva

(2014, August). When gender trumps everything: The division of parent care among siblings. Paper presented at the American Sociological Association Annual Meeting, Hilton San Francisco Union Square and Parc 55 Wyndham San Francisco, San Francisco, CA. Retrieved from http://citation.allacademic.com/meta/p_mla_apa_research_citation/7/2/6/3/4/p726344_index.html

24.

Grossman

F. K.

(1972). Brothers and sisters of retarded children: An exploratory study. New York, NY: Syracuse University Press.

25.

Heller

Arnold

C. K.

(2010). Siblings of adults with developmental disabilities: Psychosocial outcomes, relationships, and future planning. Journal of Policy and Practice in Intellectual Disabilities, 7, 16-25. doi:10.1111/j.1741-1130.2010.00243.x

26.

Heller

Kaiser

Meyer

Fish

Kramer

Dufresne

(2008). Sibling Leadership Network: Recommendations for research, advocacy and supports relating to siblings of people with developmental disabilities. Retrieved from https://www.researchgate.net/publication/237519507_The_Sibling_Leadership_Network_Recommendations_for_Research_Advocacy_and_Supports_Relating_to_Siblings_of_People_with_Developmental_Disabilities

27.

Hogan

D. P.

(2012). Family Consequences of Children’s Disabilities. New York: Russell Sage Foundation.

28.

Horwitz

A. V.

Reinhard

S. C.

Howell-White

(1996). Caregiving as reciprocal exchange in families with seriously mentally ill members. Journal of Health and Social Behavior, 37, 149-162.

29.

Hunt

(Ed.). (1966). Stigma: The experience of disability. London, England: Catholic Book Club.

30.

Jingree

Finlay

W. M. L.

(2012). “It’s got so politically correct now”: Parents’ talk about empowering individuals with learning disabilities. Sociology of Health & Illness, 34, 412-428. doi:10.1111/j.1467-9566.2011.01378.x

31.

Kafer

(2013). Feminist, queer, crip (1st ed.). Bloomington: Indiana University Press.

32.

Kelly

(2013). Building bridges with accessible care: Disability studies, feminist care scholarship, and beyond. Hypatia, 28, 784-800. doi:10.1111/j.1527-2001.2012.01310.x

33.

Kelly

(2016). Disability politics and care: The challenge of direct funding. Vancouver, British Columbia, Canada: University of British Columbia Press.

34.

Kittay

E. F.

(2001). When caring is just and justice is caring: Justice and mental retardation. Public Culture, 13, 557-579.

35.

Kittay

E. F.

(2002). Love’s labor revisited. Hypatia, 17, 237-250. doi:10.1353/hyp.2002.0061

36.

Kittay

E. F.

(2011). The ethics of care, dependence, and disability. Ratio Juris, 24(1), 49-58. doi:10.1111/j.1467-9337.2010.00473.x

37.

Kittay

E. F.

(2013). Love’s labor: Essays on women, equality and dependency. New York, NY: Routledge.

38.

Kramer

Hall

Heller

(2013). Reciprocity and social capital in sibling relationships of people with disabilities. Intellectual and Developmental Disabilities, 51, 482-495. doi:10.1352/1934-9556-51.6.482

39.

Kröger

(2009). Care research and disability studies: Nothing in common? Critical Social Policy, 29, 398-420. doi:10.1177/0261018309105177

40.

Ladau

(2015, July 20). Why person-first language doesn’t always put the person first. Think Inclusive. Retrieved from http://www.thinkinclusive.us/why-person-first-language-doesnt-always-put-the-person-first/

41.

Landsman

G. H.

(1998). Reconstructing motherhood in the age of “perfect” babies: Mothers of infants and toddlers with disabilities. Signs, 24, 69-99.

42.

Lefley

H. P.

(1997). Synthesizing the family caregiving studies: Implications for service planning, social policy, and further research. Family Relations, 46, 443-450. doi:10.2307/585104

43.

Leiter

Krauss

M. W.

Anderson

Wells

(2004). The consequences of caring effects of mothering a child with special needs. Journal of Family Issues, 25, 379-403. doi:10.1177/0192513X03257415

44.

Linton

(1998). Claiming disability: Knowledge and identity. New York: New York University Press.

45.

McGraw

L. A.

Walker

A. J.

(2007). Meanings of sisterhood and developmental disability narratives from White nondisabled sisters. Journal of Family Issues, 28, 474-500. doi:10.1177/0192513X06297312

46.

Meltzer

(2017). “I couldn’t just entirely be her sister”: The relational and social policy implications of care between young adult siblings with and without disabilities. Journal of Youth Studies, 20(8), 1-15. doi:10.1080/13676261.2017.1287889

47.

Meltzer

Kramer

(2016). Siblinghood through disability studies perspectives: Diversifying discourse and knowledge about siblings with and without disabilities. Disability & Society, 31, 17-32. doi:10.1080/09687599.2015.1127212

48.

Morris

(1997). Care of empowerment? A disability rights perspective. Social Policy & Administration, 31(1), 54-60. doi:10.1111/1467-9515.00037

49.

National Alliance for Caregiving & American Association of Retired Persons. (2009). Caregiving in the US: 2009. Washington, DC: National Alliance for Caregiving & American Association of Retired Persons.

50.

Oliver

(1990). The politics of disablement: A sociological approach. London, England: Palgrave Macmillan.

51.

Oliver

(2013). The social model of disability: Thirty years on. Disability & Society, 28, 1024-1026. doi:10.1080/09687599.2013.818773

52.

Priestley

(2003). Disability: A life course approach (1st ed.). Malden, MA: Polity Press.

53.

Quah

(2014). Caring for persons with schizophrenia at home: Examining the link between family caregivers’ role distress and quality of life. Sociology of Health & Illness, 36, 596-612. doi:10.1111/1467-9566.12091

54.

Rapp

(2012). A child surrounds this brain: The future of neurological difference according to scientists, parents and diagnosed young adults. In Pickersgill

Keulen

I. V.

(Eds.), Sociological reflections on the neurosciences (Vol. 13, pp. 3-26). Bingley, England: Emerald Group.

55.

Rapp

Ginsburg

(2001). Enabling disability: Rewriting kinship, reimagining citizenship. Public Culture, 13, 533-556.

56.

Rawson

(2010). “I’m going to be here long after you’ve gone”: Sibling perspectives of the future. British Journal of Learning Disabilities, 38, 225-231. doi:10.1111/j.1468-3156.2009.00599.x

57.

Saxena

(2015). Variables that can enhance and complicate sibling caregiving of individuals with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 12(3), 210–219. https://doi.org/10.1111/jppi.12127

58.

Saxena

Adamsons

(2013). Siblings of individuals with disabilities: Reframing the literature through a bioecological lens. Journal of Family Theory & Review, 5(4), 300–316. https://doi.org/10.1111/jftr.12021

59.

Seltzer

M. M.

Greenberg

J. S.

Krauss

M. W.

Gordon

R. M.

Judge

(1997). Siblings of adults with mental retardation or mental illness: Effects on lifestyle and psychological well-being. Family Relations, 46, 395-405.

60.

Seltzer

M. M.

Greenberg

J. S.

Orsmond

G. I.

Lounds

(2005). Life course studies of siblings of individuals with developmental disabilities. Mental Retardation, 43, 354-359.

61.

Seltzer

M. M.

Heller

(1997). Families and caregiving across the life course: Research advances on the influence of context. Family Relations, 46, 321-323.

62.

Seltzer

M. M.

Krauss

M. W.

(1993). Adult sibling relationships of persons with mental retardation. In Stoneman

Berman

P. W.

(Eds.), The effects of mental retardation, disability and illness on sibling relationships: Research issues and challenges (pp. 99-115). Baltimore, MD: Paul H. Brookes.

63.

Shakespeare

(2006). Disability rights and wrongs (1st ed.). New York, NY: Routledge.

64.

Shakespeare

Watson

(2001). The social model of disability: An outdated ideology? In Altman

Barnatt

(Eds.), Research in social science and disability (Vol. 2, pp. 9-28). Amsterdam, Netherlands: JAI Press.

65.

Sharma

Chakrabarti

Grover

(2016). Gender differences in caregiving among family: Caregivers of people with mental illnesses. World Journal of Psychiatry, 6(1), 7-17. doi:10.5498/wjp.v6.i1.7

66.

Shildrick

Price

(2002). Bodies together: Touch, ethics and disability. In Corker

Shakespeare

(Eds.), Disability/postmodernity: Embodying disability theory (pp. 62-75). London, England: Continuum.

67.

Sinclair

(1999). Why I dislike “person first” language. Retrieved from http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

68.

Stoneman

(2005). Siblings of children with disabilities: Research themes. Mental Retardation, 43, 339-350.

69.

Strauss

Corbin

(1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (Vol. xiii, 2nd ed.). Thousand Oaks, CA: Sage.

70.

Tronto

(1993). Moral boundaries: A political argument for an ethic of care. New York, NY: Routledge.

71.

Tronto

J. C.

(1987). Beyond gender difference to a theory of care. Signs, 12, 644-663. doi:10.1086/494360

72.

Twigg

(2000). Carework as a form of bodywork. Ageing & Society, 20, 389-411.

73.

Williams

(2001). In and beyond New Labour: Towards a new political ethics of care. Critical Social Policy, 21, 467-493. doi:10.1177/026101830102100405

74.

Zola

I. K.

(1972). Medicine as an institution of social control. Sociological Review, 20, 487-504.

75.

Zola

I. K.

(1982). Missing pieces: A chronicle of living with a disability. Philadelphia, PA: Temple University Press.

76.

Zola

I. K.

(1991). Bringing our bodies and ourselves back in: Reflections on a past, present, and future “medical sociology.” Journal of Health and Social Behavior, 32, 1-16. doi:10.2307/2136796