Physical Activity for Disabled Youth: Hidden Parental Labor

in Adapted Physical Activity Quarterly

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Donna L. Goodwin University of Alberta

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Amanda Ebert University of Alberta

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Locating suitable, inclusive community physical activity programs for disabled children can be challenging for parents. The aim of this study was to uncover everyday hidden labor experienced by parents, as they sought inclusive physical activity opportunities for their children. Focus group interviews with eight families of youth aged 13–19 years were completed using an interpretative phenomenological case study research approach. Four themes, interpreted through the framework of relational ethics, captured their experiences: (a) inclusion is immensely effortful; (b) judged by their impairments, not their possibilities; (c) ongoing education needed to open doors and sustain participation; and (d) the guilt of staying home. Reliance on hidden parental labor highlighted an exclusion agenda in community, accentuated by ableist belief systems.

Goodwin and Ebert are with the Faculty of Physical Education and Recreation, University of Alberta, Edmonton, AB, Canada.

Goodwin (donna.goodwin@ualberta.ca) is corresponding author.
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  • Aitchison, C. (2009). Exclusive discourses: Leisure studies and disability. Leisure Studies, 28, 375386. doi:10.1080/02614360903125096

    • Search Google Scholar
    • Export Citation
  • Allison, M.T. (2000). Leisure, diversity and social justice. Journal of Leisure Research, 32, 26. Retrieved from http://people.tamu.edu/~dscott/340/U1%20Readings/1%20-%202000%20Allison.pdf

    • Search Google Scholar
    • Export Citation
  • Ashforth, B.E., & Humphrey, R.H. (1993). Emotional labor in service delivery roles: The influence of identity. Academy of Management Review, 18, 88115. doi:10.5465/AMR.1993.3997508

    • Search Google Scholar
    • Export Citation
  • Austin, W. (2007). The ethics of everyday practice: Healthcare environment as moral communities. Advances in Nursing Science, 30, 8188. PubMed doi:10.1097/00012272-200701000-00009

    • Search Google Scholar
    • Export Citation
  • Beets, M.W., Wallner, M., & Beighle, A. (2010). Defining standards and policies for promoting physical activity in afterschool programs. Journal of School Health, 80, 411417. PubMed doi:10.1111/j.1746-1561.2010.00521.x

    • Search Google Scholar
    • Export Citation
  • Benner, P. (2004). Relational ethics of comfort, touch, and solace—Endangered arts? American Journal of Critical Care, 13, 346349. Retrieved from http://ajcc.aacnjournals.org/content/13/4/346.short

    • Search Google Scholar
    • Export Citation
  • Bergum, V., & Dossetor, J.B. (2005). Relational ethics: The full meaning of respect. Hagerstown, MD: University Publishing Group.

  • Blackmore, J. (1996). Doing ‘emotional labor’ in the education market place: Stories from the field of women in management. Discourse: Studies in the Cultural Politics of Education, 17, 337349. doi:10.1080/0159630960170304

    • Search Google Scholar
    • Export Citation
  • Boerner, K., Schulz, R., & Horowitz, A. (2004). Positive aspects of care giving and adaptation to bereavement. Psychology of Aging, 19, 668675. doi:10.1037/0882-7974.19.4.668

    • Search Google Scholar
    • Export Citation
  • Bogdan, R.C., & Biklen, S.K. (2003). Qualitative research for education: An introduction to theory and methods. Needham Heights, MA: Allyn & Bacon.

    • Search Google Scholar
    • Export Citation
  • Briscoe, C.L., & Arai, S. (2015). Relational reflective process as an act of compassionate pedagogy in therapeutic recreation. Leisure/Loisir, 39, 193214. doi:10.1080/14927713.2015.1086582

    • Search Google Scholar
    • Export Citation
  • Buttimer, J., & Tierney, E. (2005). Patterns of leisure participant among adolescents with a mild intellectual disability. Journal of Intellectual Disabilities, 9, 2542. PubMed doi:10.1177/1744629505049728

    • Search Google Scholar
    • Export Citation
  • Campbell, F.K. (2001). Inciting legal fictions: ‘Disability’s’ date with ontology and the ableist body of the law. Griffith Law Review, 10, 4262. Retrieved from https://research-repository.griffith.edu.au/bitstream/handle/10072/3714/17563_1.pdf?sequence=1&isAllowed=yhttps://research

    • Search Google Scholar
    • Export Citation
  • Campbell, F.K. (2008). Exploring internalized ableism using critical race theory. Disability & Society, 23, 151162. doi:10.1080/09687590701841190

    • Search Google Scholar
    • Export Citation
  • Campbell, F.K. (2009). Contours of ableism: The production of disability and abledness. New York, NY: Palgrave.

  • Cancian, F., & Oliker, S. (2000). Caring and gender. New York, NY: AltaMira Press.

  • Devine, M., & Parr, M. (2008). Come on in, but not too far: Social capital in an inclusive leisure setting. Leisure Sciences, 30, 391408. doi:10.1080/01490400802353083

    • Search Google Scholar
    • Export Citation
  • Dowling, F. (2015). Parents’ narratives of physically educating their children at the interplay of home and school. Qualitative Research in Sport, Exercise and Health, 7, 776792. doi:10.1080/2159676X.2015.1026384

    • Search Google Scholar
    • Export Citation
  • French, D., & Hainsworth, J. (2001). ‘There aren’t any buses and the swimming pool is always cold!’ Obstacles and opportunities in the provision of sport for disabled people. Managing Leisure, 6, 3549. doi:10.1080/13606710010026359

    • Search Google Scholar
    • Export Citation
  • Goodley, D., & Runswick-Cole, K. (2010). Emancipating play: Dis/abled children, development and deconstruction. Disability & Society, 25, 499512. doi:10.1080/09687591003755914

    • Search Google Scholar
    • Export Citation
  • Goodley, D., & Runswick-Cole, K. (2011). The violence of disablism. Sociology of Health & Illness, 33, 602617. PubMed doi:10.1111/j.1467-9566.2010.01302.x

    • Search Google Scholar
    • Export Citation
  • Goodwin, D.L. (2008). Self-regulated dependency: Ethical reflections on interdependence and help in adapted physical activity. Sports, Ethics and Philosophy, 2, 172184. doi:10.1080/17511320802223477

    • Search Google Scholar
    • Export Citation
  • Goodwin, D.L., Fitzpatrick, D., Thurmeier, R., & Hall, C. (2006). The decision to join Special Olympics: Parents’ perspectives. Adapted Physical Activity Quarterly, 23, 163183. doi:10.1123/apaq.23.2.163

    • Search Google Scholar
    • Export Citation
  • Goodwin, D.L., & Rossow-Kimball, B. (2012). Thinking ethically about professional practice in adapted physical activity. Adapted Physical Activity Quarterly, 29, 295309. PubMed doi:10.1123/apaq.29.4.295

    • Search Google Scholar
    • Export Citation
  • Green, S.E. (2007). We’re tired, not sad: Benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64, 150163. PubMed doi:10.1016/j.socscimed.2006.08.025

    • Search Google Scholar
    • Export Citation
  • Greenbaum, T. (1998). The handbook for focus group research. Thousand Oaks, CA: Sage.

  • Guba, E.G., & Lincoln, Y.S. (1994). Competing paradigms in qualitative research. In N.K. Denzin & Y.S. Lincoln (Eds.), Handbook of qualitative research (4th ed., pp. 105117). Thousand Oaks, CA: Sage.

    • Search Google Scholar
    • Export Citation
  • Heiman, T. (2002). Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 14, 159171. doi:10.1023/A:1015219514621

    • Search Google Scholar
    • Export Citation
  • Hochschild, R. (1983). The managed heart: Commercialization of human feeling. Los Angeles, CA: University of California Press.

  • Hodge, N., & Runswick-Cole, R. (2013). ‘They never pass me the ball’: Exposing ableism through the leisure experiences of disabled children, young people and their families. Children’s Geographies, 11, 311325. PubMed doi:10.1080/14733285.2013.812275

    • Search Google Scholar
    • Export Citation
  • Home, A. (2002). Challenging hidden oppression: Mothers caring for children with disabilities. Critical Social Work, 3, 16. Retrieved from http://www1.uwindsor.ca/criticalsocialwork/challenging-hidden-oppression-mothers-caring-for-children-with-disabilities

    • Search Google Scholar
    • Export Citation
  • Humphrey, R., Pollack, J.M., & Hawver, T. (2008). Leading with emotional labor. Journal of Managerial Psychology, 23, 151168. doi:10.1108/02683940810850790

    • Search Google Scholar
    • Export Citation
  • Johnson, J.L., Bottorff, J.L., Browne, A.J., Grewal, S., Hilton, B.A., & Clarke, H. (2004). Othering and being othered in the context of health care services. Health Communication, 16, 255271. doi:10.1207/S15327027HC1602_7

    • Search Google Scholar
    • Export Citation
  • Jones, D.B. (2003). Denied from a lot of places, barriers to participation in community recreation programs encountered by children with disabilities: Perspectives of parents. Leisure, 28, 4969. doi:10.1080/14927713.2003.9649939

    • Search Google Scholar
    • Export Citation
  • Kehn, M., & Kroll, T. (2009). Staying physically active after spinal cord injury: A qualitative exploration of barriers and facilitators to exercise participation. Biomed Central Public Health, 9, 168179. PubMed doi:10.1186/1471-2458-9-168

    • Search Google Scholar
    • Export Citation
  • King, G., McDougall, J., DeWitt, D., Petrenchik, T., Hurley, P., & Law, M. (2009). Predictors of change over time in the activity participation of children and youth with physical disabilities. Children’s Health Care, 38, 321351. PubMed doi:10.1080/02739610903237352

    • Search Google Scholar
    • Export Citation
  • Knight, A., Petrie, P., Zuurmond, M., & Potts, P. (2009). ‘Mingling together’: Promoting the social inclusion of disabled children and young people during the school holidays. Child & Family Social Work, 14, 1524. doi:10.1111/j.1365-2206.2008.00577.x

    • Search Google Scholar
    • Export Citation
  • Knowles, A.M., Kirk, A.F., & Hughes, A.R. (2015). Parents’ perceptions of their children’s sedentary behaviour. Qualitative Research in Sport, Exercise and Health, 7, 449465. doi:10.1080/2159676X.2015.1008026

    • Search Google Scholar
    • Export Citation
  • Kohl, H.W., III, & Cook, H.D. (Eds.). (2013). Educating the student body: Taking physical activity and physical education to school. Washington, DC: National Academies Press.

    • Search Google Scholar
    • Export Citation
  • Krueger, R.A., & Casey, M.A. (2000). Focus groups: A practical guide for applied research (3rd ed.). Thousand Oaks, CA: Sage.

  • Lyons, L. (2013). Transformed understanding or enlightened ableism? The gap between policy and practice for children with disabilities in Aotearoa New Zealand. International Journal of Early Childhood, 45, 237249. doi:10.1007/s13158-013-0086-1

    • Search Google Scholar
    • Export Citation
  • Macbeth, J.L. (2010). Reflecting on disability research in sport and leisure settings. Leisure Studies, 29, 477485. doi:10.1080/02614367.2010.523834

    • Search Google Scholar
    • Export Citation
  • MacDonald, C. (2002). Relational professional autonomy. Cambridge Quarterly of Healthcare Ethics, 11, 282289. PubMed doi:10.1017/S0963180102113090

    • Search Google Scholar
    • Export Citation
  • Mackenzie, C., & Scully, J. (2007). Moral imagination, disability and embodiment. Journal of Applied Philosophy, 24, 335351. doi:10.1111/j.1468-5930.2007.00388.x

    • Search Google Scholar
    • Export Citation
  • Marcellus, L. (2005). The ethics of relation: Public health nurse and child protection clients. Journal of Advanced Nursing, 51, 414420. PubMed doi:10.1111/j.1365-2648.2005.03512.x

    • Search Google Scholar
    • Export Citation
  • Markula, P., & Silk, M. (2011). Qualitative research for physical culture. Basingstoke, UK: Macmillan.

  • Martin, J.J. (2013). Benefits and barriers to physical activity for individuals with disabilities: A social-relational model of disability perspective. Disability and Rehabilitation, 35, 20302037. PubMed doi:10.3109/09638288.2013.802377

    • Search Google Scholar
    • Export Citation
  • Mayan, M. (2009). Essentials of qualitative inquiry. Walnut Creek, CA: Left Coast Press.

  • McConachie, H., Colver, A.F., Forsyth, R.J., Jarvis, S.N., & Parkinson, K.N. (2006). Participation of disabled children: How should it be characterized and measured? Disability and Rehabilitation, 28, 11571164. PubMed doi:10.1080/09638280500534507

    • Search Google Scholar
    • Export Citation
  • McLaughlin, J., Goodley, D., Clavering, E., & Fisher, P. (2008). Families raising disabled children: Enabling care and social justice. New York, NY: Palgrave.

    • Search Google Scholar
    • Export Citation
  • Mitchell, D.T., & Snyder, S.L. (2015). The biopolitics of disability: Neoliberalism, ablenationalism, and peripheral embodiment. Ann Arbor, MI: University of Michigan Press.

    • Search Google Scholar
    • Export Citation
  • Morgan, D.L. (1997). Focus groups as qualitative research. London, UK: Sage.

  • Mulligan, H.F., Hale, L.A., Whitehead, L., & Baxter, G.D. (2012). Barriers to physical activity for people with long-term neurological conditions: A review study. Adapted Physical Activity Quarterly, 29, 243265. PubMed doi:10.1123/apaq.29.3.243

    • Search Google Scholar
    • Export Citation
  • Nabors, L., Willoughby, S., Leff, S., & McMenamin, S. (2001). Promoting inclusion for young children with special needs on playgrounds. Journal of Developmental and Physical Disabilities, 13, 170190. doi:10.1023/A:1016665409366

    • Search Google Scholar
    • Export Citation
  • Nelson, L. (1995). Resistance and insubordination. Hypatia, 10, 2340. doi:10.1111/j.1527-2001.1995.tb01367.x

  • Obrusnikova, I., & Miccinello, D.L. (2012). Parent perceptions of factors influencing after- school physical activity of children with autism spectrum disorders. Adapted Physical Activity Quarterly, 29, 6380. PubMed doi:10.1123/apaq.29.1.63

    • Search Google Scholar
    • Export Citation
  • Oliver, M. (1996). Understanding disability from theory to practice. New York, NY: Palgrave.

  • Parkyn, H., & Coveney, J. (2013). An exploration of the value of social interaction in a boys’ group for adolescents with muscular dystrophy. Child: Care, Health and Development, 39, 8189. PubMed doi:10.1111/j.1365-2214.2011.01353.x

    • Search Google Scholar
    • Export Citation
  • Peers, D., Spencer-Cavaliere, N., & Eales, L. (2014). Say what you mean: Rethinking disability language. Adapted Physical Activity Quarterly, 31, 265282. PubMed doi:10.1123/apaq.2013-0091

    • Search Google Scholar
    • Export Citation
  • Phillips, E., Montague, J., & Archer, S. (2016). Worlds within worlds: A strategy for using interpretative phenomenological analysis with focus groups. Qualitative Research in Psychology, 13, 289302. doi:10.1080/14780887.2016.1205692

    • Search Google Scholar
    • Export Citation
  • Pitchford, A., Siebert, E., Hamm, J., & Yun, J. (2016). Parental perceptions of physical activity benefits for youth with developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 121, 2532. PubMed doi:10.1352/1944-7558-121.1.25

    • Search Google Scholar
    • Export Citation
  • Reid, K., Flowers, P., & Larkin, M. (2005). Exploring lived experience. The Psychologist, 18, 2023. Retrieved from https://www.researchgate.net/profile/Paul_Flowers/publication/221670347_Exploring_lived_Experience/links/0922b4f57ab3ca3a29000000/Exploring-lived-Experience.pdf

    • Search Google Scholar
    • Export Citation
  • Rimmer, J.H. (2005). The conspicuous absence of people with disabilities in public fitness and recreation facilities: Lack of interest or lack of access? American Journal of Health Promotion, 19, 327329. doi:10.4278/0890-1171-19.5.327

    • Search Google Scholar
    • Export Citation
  • Rimmer, J.H., & Rowland, J.L. (2008). Physical activity for youth with disabilities: A critical need in an underserved population. Developmental Neurorehabilitation, 11, 141148. PubMed doi:10.1080/17518420701688649

    • Search Google Scholar
    • Export Citation
  • Ryan, S. (2005). People don’t do odd, do they? Mothers making sense of the reactions of others towards their learning disabled children in public places. Children’s Geographies, 3, 291305. PubMed doi:10.1080/14733280500352920

    • Search Google Scholar
    • Export Citation
  • Scully, J.L. (2010). Hidden labor: Disabled/nondisabled encounters, agency, and autonomy. International Journal of Feminist Approaches to Bioethics, 3, 2542. doi:10.3138/ijfab.3.2.25

    • Search Google Scholar
    • Export Citation
  • Shaw, E. (2011). Relational ethics and moral imagination in contemporary systemic practice. Australian & New Zealand Journal of Family Therapy, 32, 114. doi:10.1375/anft.32.1.1

    • Search Google Scholar
    • Export Citation
  • Shearn, J., & Todd, S. (2000). Maternal employment and family responsibilities: The perspective of mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 13, 109131. doi:10.1046/j.1468-3148.2000.00021.x

    • Search Google Scholar
    • Export Citation
  • Silva, C.F., & Howe, P.D. (2012). Difference, adapted physical activity and human development: Potential contribution of capabilities approach. Adapted Physical Activity Quarterly, 29, 2543. PubMed doi:10.1123/apaq.29.1.25

    • Search Google Scholar
    • Export Citation
  • Smith, B., & McGannon, K.R. (2017). Developing rigor in qualitative research: Problems and opportunities within sport and exercise psychology. International Review of Sport and Exercise Psychology. doi:10.1080/1750984X.2017.131173457

    • Search Google Scholar
    • Export Citation
  • Smith, J.A. (2004). Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology, 1, 3954.

    • Search Google Scholar
    • Export Citation
  • Smith, J.A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. Thousand Oaks, CA: Sage.

    • Search Google Scholar
    • Export Citation
  • Smith, J.A., & Osborn, M. (2008). Interpretative phenomenological analysis. In J.A. Smith (Ed.), Qualitative psychology: A practical guide to methods (pp. 5380). Thousand Oaks, CA: Sage.

    • Search Google Scholar
    • Export Citation
  • Spradley, J.P. (1979). The ethnographic interview. New York, NY: Harcourt Brace Jovanovich College.

  • Stake, R.E. (2006). Multiple case study analysis. New York, NY: Guilford Press.

  • Thomas, C. (2004). How is disability understood? An examination of sociological approaches. Disability & Society, 19, 569583. doi:10.1080/0968759042000252506

    • Search Google Scholar
    • Export Citation
  • Thompson, D., & Emira, M. (2011). ‘They say every child matters, but they don’t’: An investigation into parental and carer perceptions of access to leisure facilities and respite care for children and young people with autistic spectrum disorder (ASD) or attention deficit, hyperactivity disorder. Disability & Society, 26, 6578. doi:10.1080/09687599.2011.529667

    • Search Google Scholar
    • Export Citation
  • Tomkins, L., & Eatough, V. (2010). Reflecting on the use of IPA with focus groups: Pitfalls and potentials. Qualitative Research in Psychology, 7, 244262. doi:10.1080/14780880903121491

    • Search Google Scholar
    • Export Citation
  • Tsai, E., & Fung, L. (2009). Parents’ experiences and decisions on inclusive sport participation of their children with intellectual disabilities. Adapted Physical Activity Quarterly, 26, 151171. PubMed doi:10.1123/apaq.26.2.151

    • Search Google Scholar
    • Export Citation
  • Updale, E. (2008). The ethics of the everyday: Problems professors are too posh to ponder. Clinical Ethics, 3, 3436. doi:10.1258/ce.2007.007053

    • Search Google Scholar
    • Export Citation
  • van Manen, M. (1997). Researching lived experience: Human science for an action sensitive pedagogy. London, Canada: The Althouse Press.

  • Watson, C. (2009). The ‘impossible vanity’: Uses and abuses of empathy in qualitative inquiry. Qualitative Research, 9, 105117. doi:10.1177/1468794108098033

    • Search Google Scholar
    • Export Citation
  • Wiart, L., Darrah, J., Kelly, M., & Legg, D. (2015). Community fitness programs: What is available for children and youth with motor disabilities and what do parents want? Physical & Occupational Therapy in Pediatrics, 35, 7387. PubMed doi:10.3109/01942638.2014.990550

    • Search Google Scholar
    • Export Citation
  • Withers, A.J. (2012). Disability politics and theory. Black Point, Canada: Fernwood Publishing.

  • Woodgate, R.L., Edwards, M., & Ripat, J. (2012). How families of children with complex care needs participate in everyday life. Social Science & Medicine, 75, 19121920. PubMed doi:10.1016/j.socscimed.2012.07.037

    • Search Google Scholar
    • Export Citation
  • Wu, H., & Volker, D. (2009). The use of theory in qualitative approaches to research: Application in end-of-life studies. Journal of Advanced Nursing, 65, 27192732. PubMed doi:10.1111/j.1365-2648.2009.05157.x

    • Search Google Scholar
    • Export Citation
  • Yardley, L. (2000). Dilemmas in qualitative health research. Psychology & Health, 15, 215228. doi:10.1080/08870440008400302

  • Yin, R.K. (2014). Case study research: Design and methods. Thousand Oaks, CA: Sage.

  • Zitomer, M., & Goodwin, D.L. (2014). Gauging the quality of qualitative research in adapted physical activity. Adapted Physical Activity Quarterly, 31, 193218. doi:10.1123/apaq.2013-0084

    • Search Google Scholar
    • Export Citation
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