To Include or Not to Include Them? Realities, Challenges and Resistance to the Participation of People with Disabilities in Seniors’ Organizations
Main Article Content
Keywords
Social participation, Inclusion, Senior
Abstract
People with disabilities are often excluded from mainstream seniors’ organizations. A participatory action research project was undertaken in a seniors’ leisure association to better include members with disabilities. Results underline the importance of understanding the interaction of individual and environmental factors when looking to support the participation of seniors with disabilities.
References
Anaby, D., Miller, W. C., Eng, J. J., Jarus, T., Noreau, L., & PACC Research Group. (2009). Can personal and environmental factors explain participation of older adults? Disability and Rehabilitation, 31(15), 1275-1282.
Balandin, S., Llewellyn, G., Dew, A., & Ballin, L. (2006). 'We couldn't function without volunteers': volunteering with a disability, the perspective of not-for-profit agencies. International Journal of Rehabilitation Research, 29(2), 131-136.
Balandin, S., Llewellyn, G., Dew, A., Ballin, L., & Schneider, J. (2006). Older disabled workers' perceptions of volunteering. Disability & Society, 21(7), 677-692.
Barnes, C., & Mercer, G. (2013). Exploring disability.
Cambridge: Polity Press.
Bickenbach, J., Bigby, C., Salvador-Carulla, L., Heller, T., Leonardi, M., LeRoy, B., . . . Spindel, A. (2012). The Toronto Declaration on Bridging Knowledge, Policy and Practice in Aging and Disability. Toronto: Festival of International Conferences on Caregiving, Disability, Aging and Technology.
Bigby, C., & Balandin, S. (2005). Another minority group: use of aged care day programs and community leisure services by older people with lifelong disability. Australasian Journal on Ageing, 24(1), 14-18.
Biggs, S. (2004). New agism: Age imperialism, personal experience and ageing policy. In S. O. Daatland & S. Biggs (Eds.), Ageing and diversity: Multiple pathways and cultural migrations (pp. 95-106). Bristol: Policy Press
Bradbury, H., & Reason, P. (2003). Action research: An opportunity for revitalizing research purpose and practices. Qualitative Social Work, 2(2), 155-175.
Chevalier, J. M., & Buckles, D. J. (2008). SAS2: A Guide to Collaborative Inquiry and Social Engagement. New Delhi, India: SAGE and International Development Research Centre.
Cohen, E. S. (1988). The elderly mystique: Constraints on the autonomy of the elderly with disabilities. The Gerontologist, 28, 24-31.
Creswell, J. W. (2013). Qualitative inquiry & research design: choosing among five approaches (3rd ed.). Los Angeles: Sage.
Fals Borda, O. (2001). Participatory (action) research in social theory: Origins and challenges. In P. Reason & H. Bradbury (Eds.), Handbook of action research: Participatory inquiry and practice (pp. 27-37). London: Sage.
Fougeyrollas, P. (2010). La funambule, le fil et la toile : transformations réciproques du sens du handicap. Québec, Québec: Presses de l'Université Laval.
Fougeyrollas, P., & Gaucher, C. (2013). Personnes handicapées et droits humains: "Rien à notre propos sans nous". In F. Saillant & K. Truchon (Eds.), Droits et cultures en mouvements. Québec: Les Presses de l'Université Laval.
Gaugler, J. E., & Zarit, S. H. (2001). The effectiveness of adult day services for disabled older people. Journal of Aging & Social Policy, 12(2), 23-47.
Gilmour, H. (2012). Social participation and the health and well-being of Canadian seniors. Statistic Canada Catalogue - Health Reports, 23(4).
Ingvaldsen, A. K., & Balandin, S. (2011). 'If we are going to include them we have to do it before we die': Norwegian seniors' views of including seniors with intellectual disability in senior centres. Journal of Applied Research in Intellectual Disabilities, 24(6), 583-593.
Institut de la statistique du Québec (2013). Enquête québécoise sur les limitations d’activités, les maladies chroniques et le vieillissement 2010-2011. Utilisation des services de santé et des services sociaux des personnes avec incapacité. Québec: Gouvernement du Québec.
Jeppsson Grassman, E. (2013). Time, age and the failing body: A long life with disability. In E. Jeppson Grassman & A. Whitaker (Eds.), Ageing with disability: A lifecourse perspective (pp. 17-34). Bristol: Policy Press.
Jeppsson Grassman, E., & Whitaker, A. (2013). Ageing with disability: An introduction. In E. Jeppson Grassman & A. Whitaker (Eds.), Ageing with Disability: a lifecourse perspective (pp. 1-15). Bristol: Policy Press.
Jönson, H., & Taghizadeh Larsson, A. (2009). The exclusion of older people in disability activism and policies: A case of inadvertent ageism? Journal Of Aging Studies, 23, 69-77.
Katz, M. B. (1989). The undeserving poor: From the war on poverty to the war on welfare. New York: Pantheon.
Katz, S. (1996). Disciplining old age: The formulation of gerontological knowledge. Charlottesville: University Press of Virginia.
Lacroix, N., & Raymond, E. (2015). Aînés ayant des incapacités et participation dans les associations d'aînés. Recension des écrits. In Cahier de la Chaire de recherche Marcelle-Mallet sur la culture philanthropique (Ed.) (pp. 40). Québec: Université Laval.
Lagacé, M., Laplante, J., & Davignon, A. (2011). Construction sociale du vieillir dans les médias écrits canadiens : de la lourdeur de la vulnérabilité à l'insoutenable légèreté de l'être. Communication & Organisation, 40(2), 87-102.
Lund, A., & Engelsrud, G. (2008). 'I am not that old': inter-
personal experiences of thriving and threats at a senior centre. Ageing & Society, 28(5), 675-692.
McConkey, R., & Collins, S. (2010). The role of support
staff in promoting the social inclusion of persons with an intellectual disability. Journal of Intellectual Disability Research, 54, 691-700.
Minkler, M., & Fadem, P. (2002). "Successful aging": A disability perspective. Journal of Disability Policy Studies, 12, 229-235.
Murray, C. J. L., Ortblad, K. F., Guinovart, C., Lim, S. S., Wolock, T. M., Roberts, D. A., . . . Naghavi, M. (2014). Global, regional, and national incidence and mortality for HIV, tuberculosis, and malaria during 1990—2013: a systematic analysis for the Global Burden of Disease Study 2013. The Lancet, 384(9947), 1005-1070.
Narushima, M. (2005). 'Payback time': Community volunteering among older adults as a transformative mechanism. Ageing & Society, 25(4), 567-584.
National Council on Ageing and Older People & National Disability Authority. (2006). Ageing and disability: A discussion paper. Dublin: National Council on Ageing and Older People & National Disability Authority.
Padgett, D. (2008). Qualitative methods in social work research. Thousand Oaks: Sage.
Paillard-Borg, S., Wang, H. X., Winblad, B., & Fratiglioni, L. (2009). Pattern of participation in leisure activities among older people in relation to their health conditions and contextual factors: a survey in a Swedish urban area. Ageing & Society, 29, 803-821.
Pain, R., Kindon, S., & Kesby, M. (2007). Participatory action research: Making a difference to theory, practice and action. In S. Kindon, R. Pain & M. Kesby (Eds.), Participatory action research approaches and methods: Connecting people, participation and place (pp. 26-32). New York: Routledge.
Pardasani, M. (2010). Senior centers: Characteristics of participants and nonparticipants. Activities, Adaptation and Aging, 34(1), 48-70.
Percival, J., & Hanson, J. (2005). 'I'm like a tree a million miles from the water's edge': Social care and inclusion of older people with visual impairment. British Journal of Social Work, 35(2), 189-205.
Priestley, M. (2003). Disability: A life course approach. Cambridge: Polity Press.
Priestley, M., & Rabiee, P. (2002). Same difference? Older people's organisations and disability issues. Disability and Society, 17(6), 597-611.
Raymond, E. (2014). Les discours et les pratiques de participation sociale d’aînés handicapés : Exploration critique d’un carrefour peu fréquenté, PhD Thesis, McGill University, Montreal.
Raymond, E., & Grenier, A. (2013). Participation in policy discourse: New form of exclusion for seniors with disabilities? Canadian Journal on Aging-Revue Canadienne Du Vieillissement, 32(2), 117-129.
Raymond, E., Grenier, A., & Hanley, J. (2014). Community participation of older adults with disabilities. Journal of Community & Applied Social Psychology, 24(1), 50-62.
Raymond, E., & Grenier, A. (2015). Social participation at the intersection of old age and lifelong disability: Illustrations from a Photo-Novel Project. Journal Of Aging Studies, (35), 190-200.
Reason, P., & Bradbury, H. (2001). Introduction: Inquiry and participation in search of a world worthy of human aspiration. In P. Reason & H. Bradbury (Eds.), Handbook of action research: Participative inquiry and practice (pp. 1-14). London: Sage.
Reason, P., & Bradbury, H. (2008). The Sage Handbook of Action Research: Participative Inquiry and Practice. Thousand Oaks, CA: Sage.
Roulstone, A., & Prideaux, S. (2012). Understanding disability policy. Bristol: Policy Press.
Rozanova, J. (2010). Discourse of successful aging in The Globe & Mail: Insights from critical gerontology. Journal of Aging Studies, 24, 213-222.
Russell, D. (2009). Living arrangements, social integration, and loneliness in later life: The case of physical disability.
Journal of Health and Social Behavior, 50, 460-475.
Savard, J., Lebel, P., Leduc, N., Beland, F., & Bergman, H. (2009). Do group activities in centers for seniors correspond to the needs of different profiles of participants? Canadian Journal on Aging/La Revue Canadienne du Vieillissement, 28(1), 27-49.
Savard, J., Leduc, N., Lebel, P., Beland, F., & Bergman, H. (2009). Determinants of adult day center attendance among older adults with functional limitations. Journal of Aging And Health, 21(7), 985-1015.
Shakespeare, T. (2014). Disability rights and wrongs revisited. London: Routledge.
Sheets, D. (2010). Aging with Physical Disability. In J. H. Stone & M. Blouin (Eds.), International Encyclopedia of Rehabilitation: Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/288/.
Strain, L. A. (2001). Senior centres: who participates? Canadian Journal on Aging, 20(4), 471-491.
Tang, F. (2009). Late-life volunteering and trajectories of physical health. Journal of Applied Gerontology, 28(4), 524-533.
Tang, F., Morrow-Howell, N., & Choi, E. (2010). Why do older adult volunteers stop volunteering? Ageing & Society, 30(5), 859-878.
United Nations (2002). Report of the Second World Assembly on Ageing. New York: United Nations.
United Nations (2006). Convention on the Rights of Persons with Disabilities. New York: United Nations.
United Nations (2008). The Madrid International Plan of Action on Ageing: Guiding framework and toolkit for practitioners & policy makers. New York: United Nations.
United Nations (2014). Enable: Priority themes. http://www.un.org/disabilities/default.asp?id=33.
Retrieved February 13, 2014.
Verbrugge, L. M., & Yang, L. (2002). Aging with disability and disability with aging. Journal of Disability Policy Studies, 12(4), 253-268.
World Health Organization (2002). Active ageing: A policy framework. Geneva: World Health Organization.
World Health Organization (2007). Global age-friendly cities: A guide. Geneva: World Health Organization.
World Health Organization. (2014). Disability and health. Fact sheet (352). Geneva: World Health Organization.
Zarb, G. (1993). "Forgotten but not gone": The experience of ageing with disability. In S. Arber & M. Evandrou (Eds.), Ageing, independence and the life course (pp. 25-45). London: Jessica Kingsley Publishers.
Zarb, G., & Oliver, M. J. (1993). Ageing with a disability. What do they expect after all these years? London: University of Greenwich.
Zedlewski, S. R., & Butrica, B. A. (2007). Are we taking advantage of older adult's potential? Perspective on productive aging. Washington: The Urban Institute
Balandin, S., Llewellyn, G., Dew, A., & Ballin, L. (2006). 'We couldn't function without volunteers': volunteering with a disability, the perspective of not-for-profit agencies. International Journal of Rehabilitation Research, 29(2), 131-136.
Balandin, S., Llewellyn, G., Dew, A., Ballin, L., & Schneider, J. (2006). Older disabled workers' perceptions of volunteering. Disability & Society, 21(7), 677-692.
Barnes, C., & Mercer, G. (2013). Exploring disability.
Cambridge: Polity Press.
Bickenbach, J., Bigby, C., Salvador-Carulla, L., Heller, T., Leonardi, M., LeRoy, B., . . . Spindel, A. (2012). The Toronto Declaration on Bridging Knowledge, Policy and Practice in Aging and Disability. Toronto: Festival of International Conferences on Caregiving, Disability, Aging and Technology.
Bigby, C., & Balandin, S. (2005). Another minority group: use of aged care day programs and community leisure services by older people with lifelong disability. Australasian Journal on Ageing, 24(1), 14-18.
Biggs, S. (2004). New agism: Age imperialism, personal experience and ageing policy. In S. O. Daatland & S. Biggs (Eds.), Ageing and diversity: Multiple pathways and cultural migrations (pp. 95-106). Bristol: Policy Press
Bradbury, H., & Reason, P. (2003). Action research: An opportunity for revitalizing research purpose and practices. Qualitative Social Work, 2(2), 155-175.
Chevalier, J. M., & Buckles, D. J. (2008). SAS2: A Guide to Collaborative Inquiry and Social Engagement. New Delhi, India: SAGE and International Development Research Centre.
Cohen, E. S. (1988). The elderly mystique: Constraints on the autonomy of the elderly with disabilities. The Gerontologist, 28, 24-31.
Creswell, J. W. (2013). Qualitative inquiry & research design: choosing among five approaches (3rd ed.). Los Angeles: Sage.
Fals Borda, O. (2001). Participatory (action) research in social theory: Origins and challenges. In P. Reason & H. Bradbury (Eds.), Handbook of action research: Participatory inquiry and practice (pp. 27-37). London: Sage.
Fougeyrollas, P. (2010). La funambule, le fil et la toile : transformations réciproques du sens du handicap. Québec, Québec: Presses de l'Université Laval.
Fougeyrollas, P., & Gaucher, C. (2013). Personnes handicapées et droits humains: "Rien à notre propos sans nous". In F. Saillant & K. Truchon (Eds.), Droits et cultures en mouvements. Québec: Les Presses de l'Université Laval.
Gaugler, J. E., & Zarit, S. H. (2001). The effectiveness of adult day services for disabled older people. Journal of Aging & Social Policy, 12(2), 23-47.
Gilmour, H. (2012). Social participation and the health and well-being of Canadian seniors. Statistic Canada Catalogue - Health Reports, 23(4).
Ingvaldsen, A. K., & Balandin, S. (2011). 'If we are going to include them we have to do it before we die': Norwegian seniors' views of including seniors with intellectual disability in senior centres. Journal of Applied Research in Intellectual Disabilities, 24(6), 583-593.
Institut de la statistique du Québec (2013). Enquête québécoise sur les limitations d’activités, les maladies chroniques et le vieillissement 2010-2011. Utilisation des services de santé et des services sociaux des personnes avec incapacité. Québec: Gouvernement du Québec.
Jeppsson Grassman, E. (2013). Time, age and the failing body: A long life with disability. In E. Jeppson Grassman & A. Whitaker (Eds.), Ageing with disability: A lifecourse perspective (pp. 17-34). Bristol: Policy Press.
Jeppsson Grassman, E., & Whitaker, A. (2013). Ageing with disability: An introduction. In E. Jeppson Grassman & A. Whitaker (Eds.), Ageing with Disability: a lifecourse perspective (pp. 1-15). Bristol: Policy Press.
Jönson, H., & Taghizadeh Larsson, A. (2009). The exclusion of older people in disability activism and policies: A case of inadvertent ageism? Journal Of Aging Studies, 23, 69-77.
Katz, M. B. (1989). The undeserving poor: From the war on poverty to the war on welfare. New York: Pantheon.
Katz, S. (1996). Disciplining old age: The formulation of gerontological knowledge. Charlottesville: University Press of Virginia.
Lacroix, N., & Raymond, E. (2015). Aînés ayant des incapacités et participation dans les associations d'aînés. Recension des écrits. In Cahier de la Chaire de recherche Marcelle-Mallet sur la culture philanthropique (Ed.) (pp. 40). Québec: Université Laval.
Lagacé, M., Laplante, J., & Davignon, A. (2011). Construction sociale du vieillir dans les médias écrits canadiens : de la lourdeur de la vulnérabilité à l'insoutenable légèreté de l'être. Communication & Organisation, 40(2), 87-102.
Lund, A., & Engelsrud, G. (2008). 'I am not that old': inter-
personal experiences of thriving and threats at a senior centre. Ageing & Society, 28(5), 675-692.
McConkey, R., & Collins, S. (2010). The role of support
staff in promoting the social inclusion of persons with an intellectual disability. Journal of Intellectual Disability Research, 54, 691-700.
Minkler, M., & Fadem, P. (2002). "Successful aging": A disability perspective. Journal of Disability Policy Studies, 12, 229-235.
Murray, C. J. L., Ortblad, K. F., Guinovart, C., Lim, S. S., Wolock, T. M., Roberts, D. A., . . . Naghavi, M. (2014). Global, regional, and national incidence and mortality for HIV, tuberculosis, and malaria during 1990—2013: a systematic analysis for the Global Burden of Disease Study 2013. The Lancet, 384(9947), 1005-1070.
Narushima, M. (2005). 'Payback time': Community volunteering among older adults as a transformative mechanism. Ageing & Society, 25(4), 567-584.
National Council on Ageing and Older People & National Disability Authority. (2006). Ageing and disability: A discussion paper. Dublin: National Council on Ageing and Older People & National Disability Authority.
Padgett, D. (2008). Qualitative methods in social work research. Thousand Oaks: Sage.
Paillard-Borg, S., Wang, H. X., Winblad, B., & Fratiglioni, L. (2009). Pattern of participation in leisure activities among older people in relation to their health conditions and contextual factors: a survey in a Swedish urban area. Ageing & Society, 29, 803-821.
Pain, R., Kindon, S., & Kesby, M. (2007). Participatory action research: Making a difference to theory, practice and action. In S. Kindon, R. Pain & M. Kesby (Eds.), Participatory action research approaches and methods: Connecting people, participation and place (pp. 26-32). New York: Routledge.
Pardasani, M. (2010). Senior centers: Characteristics of participants and nonparticipants. Activities, Adaptation and Aging, 34(1), 48-70.
Percival, J., & Hanson, J. (2005). 'I'm like a tree a million miles from the water's edge': Social care and inclusion of older people with visual impairment. British Journal of Social Work, 35(2), 189-205.
Priestley, M. (2003). Disability: A life course approach. Cambridge: Polity Press.
Priestley, M., & Rabiee, P. (2002). Same difference? Older people's organisations and disability issues. Disability and Society, 17(6), 597-611.
Raymond, E. (2014). Les discours et les pratiques de participation sociale d’aînés handicapés : Exploration critique d’un carrefour peu fréquenté, PhD Thesis, McGill University, Montreal.
Raymond, E., & Grenier, A. (2013). Participation in policy discourse: New form of exclusion for seniors with disabilities? Canadian Journal on Aging-Revue Canadienne Du Vieillissement, 32(2), 117-129.
Raymond, E., Grenier, A., & Hanley, J. (2014). Community participation of older adults with disabilities. Journal of Community & Applied Social Psychology, 24(1), 50-62.
Raymond, E., & Grenier, A. (2015). Social participation at the intersection of old age and lifelong disability: Illustrations from a Photo-Novel Project. Journal Of Aging Studies, (35), 190-200.
Reason, P., & Bradbury, H. (2001). Introduction: Inquiry and participation in search of a world worthy of human aspiration. In P. Reason & H. Bradbury (Eds.), Handbook of action research: Participative inquiry and practice (pp. 1-14). London: Sage.
Reason, P., & Bradbury, H. (2008). The Sage Handbook of Action Research: Participative Inquiry and Practice. Thousand Oaks, CA: Sage.
Roulstone, A., & Prideaux, S. (2012). Understanding disability policy. Bristol: Policy Press.
Rozanova, J. (2010). Discourse of successful aging in The Globe & Mail: Insights from critical gerontology. Journal of Aging Studies, 24, 213-222.
Russell, D. (2009). Living arrangements, social integration, and loneliness in later life: The case of physical disability.
Journal of Health and Social Behavior, 50, 460-475.
Savard, J., Lebel, P., Leduc, N., Beland, F., & Bergman, H. (2009). Do group activities in centers for seniors correspond to the needs of different profiles of participants? Canadian Journal on Aging/La Revue Canadienne du Vieillissement, 28(1), 27-49.
Savard, J., Leduc, N., Lebel, P., Beland, F., & Bergman, H. (2009). Determinants of adult day center attendance among older adults with functional limitations. Journal of Aging And Health, 21(7), 985-1015.
Shakespeare, T. (2014). Disability rights and wrongs revisited. London: Routledge.
Sheets, D. (2010). Aging with Physical Disability. In J. H. Stone & M. Blouin (Eds.), International Encyclopedia of Rehabilitation: Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/288/.
Strain, L. A. (2001). Senior centres: who participates? Canadian Journal on Aging, 20(4), 471-491.
Tang, F. (2009). Late-life volunteering and trajectories of physical health. Journal of Applied Gerontology, 28(4), 524-533.
Tang, F., Morrow-Howell, N., & Choi, E. (2010). Why do older adult volunteers stop volunteering? Ageing & Society, 30(5), 859-878.
United Nations (2002). Report of the Second World Assembly on Ageing. New York: United Nations.
United Nations (2006). Convention on the Rights of Persons with Disabilities. New York: United Nations.
United Nations (2008). The Madrid International Plan of Action on Ageing: Guiding framework and toolkit for practitioners & policy makers. New York: United Nations.
United Nations (2014). Enable: Priority themes. http://www.un.org/disabilities/default.asp?id=33.
Retrieved February 13, 2014.
Verbrugge, L. M., & Yang, L. (2002). Aging with disability and disability with aging. Journal of Disability Policy Studies, 12(4), 253-268.
World Health Organization (2002). Active ageing: A policy framework. Geneva: World Health Organization.
World Health Organization (2007). Global age-friendly cities: A guide. Geneva: World Health Organization.
World Health Organization. (2014). Disability and health. Fact sheet (352). Geneva: World Health Organization.
Zarb, G. (1993). "Forgotten but not gone": The experience of ageing with disability. In S. Arber & M. Evandrou (Eds.), Ageing, independence and the life course (pp. 25-45). London: Jessica Kingsley Publishers.
Zarb, G., & Oliver, M. J. (1993). Ageing with a disability. What do they expect after all these years? London: University of Greenwich.
Zedlewski, S. R., & Butrica, B. A. (2007). Are we taking advantage of older adult's potential? Perspective on productive aging. Washington: The Urban Institute
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Author Biographies
Emilie Raymond, Université Laval École de service social
Émilie Raymond is assistant professor at the School of Social Work of Laval University, and researcher at the Centre for Interdisciplinary Research in Rehabilitation and Social Integration (CIRRIS), in Québec City. Her teaching emphasis is on community organization and social action. Dr. Raymond is interested in the intersection of public discourses, social movements and individual experiences related to citizenship. She builds participatory approaches to research and grounds her work in a critical practice of social science. Dr. Raymond co-edited the collective book Droits de vieillir et citoyenneté des aînés. Pour une perspective internationale, published in 2015.
Nadine Lacroix, Université Laval École de service social
Nadine Lacroix is a social worker and her master research project focused on social participation of people living with multiple sclerosis. She works as a research assistant on a project aiming to increase social participation of older people living with disabilities in mainstream organizations.