Disabled People’s Organisations Grow Social Connectedness for Persons with Disabilities Evidence from South Asia
Main Article Content
Keywords
social network analysis, low income, DPOs
Abstract
Paper examines the social connections developed through two Disabled People’s Organisation programs in low-income, rural communities of Nepal and India. Mixed methods: network mapping surveys and Focus Group Discussions (FGDs) are used to compare between before joining group and time of study. Results clearly suggest positive impacts on social networks.
References
Armstrong, M. J. (1993). Disability Self-Help Organizations in the Developing World: A Case Study from Malaysia. International Journal of Rehabilitation Research, 16(3), 185-194. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=eric&AN=EJ470704&site=eds-live&scope=site
Berkman, L. F. (1983). Health and ways of living: the Alameda County study [Book]. Oxford University Press. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=edshlc&AN=edshlc.001110729.4&site=eds-live&scope=site
Chen, J., Lin, T.-J., Justice, L., & Sawyer, B. (2017). The Social Networks of Children With and Without Disabilities in Early Childhood Special Education Classrooms. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-017-3272-4
Cobley, D. S. (2013). Towards economic participation: examining the impact of the Convention on the Rights of Persons with Disabilities in India. Disability & Society, 28(4), 441-455. https://doi.org/10.1080/09687599.2012.717877
Cohen, S. (2004). Social relationships and health. American Psychologist, 59(8), 676-684. https://doi.org/10.1037/0003-066x.59.8.676
Cornielje, H. (2009). The role and position of Disabled People's Organisations in community based rehabilitation: Balancing between dividing lines. Asia Pacific Disability Rehabilitation Journal, 20(1), 3-14.
Dalgard, O. S., Bjork, S., & Tambs, K. (1995). Social support, negative life events and mental health. British Journal of Psychiatry, 166(1), 29-34.
Deepak, S., Rufino dos Santos, L., Griffo, G., de Santana, D. B., Kumar, J., & Bapu, S. (2013). Organisations of Persons with Disabilities and Community-based Rehabilitation. Disability, CBR & Inclusive Development, 24(3), 5-20. https://doi.org/10.5463/DCID.v24i3.269
Dhungana, B. M., & Kusakabe, K. (2010). The role of self-help groups in empowering disabled women: a case study in Kathmandu Valley, Nepal. Development in Practice, (7), 855. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=edsbl&AN=RN276741607&site=eds-live&scope=site
Eisenman, L. T., Farley-Ripple, E., Culnane, M., & Freedman, B. (2013). Rethinking Social Network Assessment for Students with Intellectual Disabilities (ID) in Postsecondary Education [Article]. Journal of Postsecondary Education & Disability, 26(4), 367-384. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=95314762&site=eds-live&scope=site
Ell, K., Nishimoto, R., Mediansky, L., Mantell, J., & Hamovitch, M. (1992). Social relations, social support and survival among patients with cancer. Journal of Psychosomatic Research, 36(6), 531-541. https://doi.org/10.1016/0022-3999(92)90038-4
Grills, N. J., Hoq, M., Wong, C.-P. P., Allagh, K., Singh, L., Soji, F., & Murthy, G. V. S. (2020). Disabled People’s Organisations increase access to services and improve well-being: evidence from a cluster randomized trial in North India. BMC Public Health, 20(1), 145. https://doi.org/10.1186/s12889-020-8192-0
Hanneman, R. A., & Riddle, M. (2011). Concepts and measures for basic network analysis. In The SAGE handbook of social network analysis (pp. 340-369). SAGE.
Harel, D., & Koren, Y. (2002). A fast multi-scale method for drawing large graphs. Journal of Graph Algorithms and Applications, 6(3), 179-202.
Henderson, C., Mannan, H., & Power, J. (2017). Disability Inclusive Development Good Practices: Level of Commitment to Core Concepts of Human Rights. Disability, CBR & Inclusive Development, 28(3), 32-55. https://doi.org/10.5463/DCID.v29i3.608
Holt-Lunstad, J. (2015). Social Integration, Social Networks, and Health. In J. D. Wright (Ed.), International Encyclopedia of the Social & Behavioral Sciences (Second Edition) (pp. 365-370). Elsevier. https://doi.org/https://doi.org/10.1016/B978-0-08-097086-8.14040-1
Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social Relationships and Mortality Risk: A Meta-analytic Review. PLoS Medicine, 7(7), e1000316. https://doi.org/10.1371/journal.pmed.1000316
House, J. S., Landis, K. R., & Umberson, D. (1988). Social relationships and health. Science, 241(4865), 540-545.
Kleintjes, S., Lund, C., & Swartz, L. (2013). Organising for self-advocacy in mental health: Experiences from seven African countries. African Journal of Psychiatry, 16(3), 187-195. https://doi.org/10.4314/ajpsy.v16i3.25
Knox, S. S., & Uvnas-Moberg, K. (1998). Social isolation and cardiovascular disease: an atherosclerotic pathway? Psychoneuroendocrinology, 23(8), 877-890.
Kreider, C. M., Bendixen, R. M., Young, M. E., Prudencio, S. M., McCarty, C., & Mann, W. C. (2016). Social networks and participation with others for youth with learning, attention, and autism spectrum disorders. Canadian Journal of Occupational Therapy. Revue Canadienne D'Ergothérapie, 83(1), 14-26. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=s3h&AN=112724139&site=eds-live&scope=site
Kumaran, K. P. (2011). Role of Self-help Groups in Promoting Inclusion and Rights of Persons with Disabilities [article]. Disability, CBR & Inclusive Development, Vol 22, Iss 2, Pp 105-113 (2011)(2), 105. https://doi.org/10.5463/dcid.v22i2.78
Leung, M., Devine, A., Singh, L., Yip, T.-W., & Grills, N. (2019). ‘With Hope to Help Ourselves and Others’: The Impact of Disabled People’s Organisations on the Lives of Persons with Disability in Uttarakhand, North India. Review of Disability Studies: An International Journal, 15(2).
Lin, N., Fu, Y.-c., & Hsung, R.-M. (2001). The Position Generator: Measurement Techniques for Investigations of Social Capital. In N. Lin, K. Cook, & R. S. Burt (Eds.), Social capital: Theory and research (pp. 57-81). Aldine de Gruyter. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ecn&AN=0651737&site=eds-live&scope=site
MacDonald, G., Saltzman, J. L., & Leary, M. R. (2003). Social approval and trait self-esteem [Article]. Journal of Research in Personality, 37, 23-40. https://doi.org/10.1016/S0092-6566(02)00531-7
Marin, A., & Wellman, B. (2011). Social network analysis: An introduction. In The SAGE handbook of social network analysis (Vol. 11). SAGE.
McCausland, D., McCallion, P., Cleary, E., & McCarron, M. (2016). Social Connections for Older People with Intellectual Disability in Ireland: Results from Wave One of IDS-TILDA [Article]. J Appl Res Intellect Disabil, 29(1), 71-82. https://doi.org/10.1111/jar.12159
Miles, S., Fefoame, G. O., Mulligan, D., & Haque, Z. (2012). Education for Diversity: The Role of Networking in Resisting Disabled People's Marginalisation in Bangladesh. Compare: A Journal of Comparative and International Education, 42(2), 283-302. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=eric&AN=EJ958957&site=eds-live&scope=site
http://dx.doi.org/10.1080/03057925.2012.650482
Mithen, J., Aitken, Z., Ziersch, A., & Kavanagh, A. M. (2015). Inequalities in social capital and health between people with and without disabilities [Article]. Social Science and Medicine, 126, 26-35. https://doi.org/10.1016/j.socscimed.2014.12.009
Patterson, T. L., Shaw, W. S., Semple, S. J., Cherner, M., McCutchan, J. A., Atkinson, J. H., Grant, I., & Nannis, E. (1996). Relationship of psychosocial factors to HIV disease progression. Annals of Behavioral Medicine, 18(1), 30-39. https://doi.org/10.1007/bf02903937
Perkins, J. M., Subramanian, S. V., & Christakis, N. A. (2015). Social networks and health: A systematic review of sociocentric network studies in low- and middle-income countries [Article]. Social Science and Medicine, 125, 60-78. https://doi.org/10.1016/j.socscimed.2014.08.019
Polu, W., Mong, A., & Nelson, C. (2015). Social and economic inclusion of people with disabilities: practical lessons from Bangladesh. Development in Practice, 25(viii), 1182-1188. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ich&AN=ICHA950226&site=eds-live&scope=site
Rosenquist, J. N., Fowler, J. H., & Christakis, N. A. (2011). Social network determinants of depression. Molecular Psychiatry, 16(3), 273-281. https://doi.org/10.1038/mp.2010.13
Saarinen, M., Holm, L., & Uusitalo-Malmivaara, L. (2018). Changes in the Social Networks of Three Women with an Intellectual Disability: A Qualitative Follow-Up Study. Journal of Education and Learning, 7(3), 76-86. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=eric&AN=EJ1173106&site=eds-live&scope=site
Schaefer, C., Coyne, J. C., & Lazarus, R. S. (1981). The health-related functions of social support. Journal of Behavioral Medicine, 4(4), 381-406. https://doi.org/10.1007/BF00846149
Seeman, T. E., Berkman, L. F., Kohout, F., Lacroix, A., Glynn, R., & Blazer, D. (1993). Intercommunity variations in the association between social ties and mortality in the elderly. A comparative analysis of three communities. Annals of Epidemiology, 3(4), 325-335.
Shakespeare, T. (1993). Disabled people's self-organisation: a new social movement? Disability, Handicap & Society, 8(3), 249-264. https://doi.org/10.1080/02674649366780261
Smith, M., Ceni, A., Milic-Frayling, N., Shneiderman, B., Mendes Rodrigues, E., Leskovec, J., & Dunne, C. (2010). NodeXL: a free and open network overview, discovery and exploration add-in for Excel 2007/2010/2013/2016. In Social Media Research Foundation. https://www.smrfoundation.org
Uchino, B. N., Cacioppo, J. T., & Kiecolt-Glaser, J. K. (1996). The relationship between social support and physiological processes: a review with emphasis on underlying mechanisms and implications for health. Psychological Bulletin, 119(3), 488-531.
Young, R., Reeve, M., Devine, A., Singh, L., & Grills, N. (2016). A realist evaluation of the formation of groups of people with disabilities in North India [article]. Christian Journal for Global Health, Vol 3, Iss 2, Pp 72-90 (2016)(2), 72. https://doi.org/10.15566/cjgh.v3i2.145
Young, R., Reeve, M., & Grills, N. (2016). The Functions of Disabled People's Organisations (DPOs) in Low and Middle-income Countries: a Literature Review. Disability, CBR & Inclusive Development, 27(3), 45. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=edo&AN=126291196&site=eds-live&scope=site
Zhang, C. (2017). 'Nothing about us without us': the emerging disability movement and advocacy in China. Disability & Society, 32, 1096-1101. https://doi.org/10.1080/09687599.2017.1321229
Berkman, L. F. (1983). Health and ways of living: the Alameda County study [Book]. Oxford University Press. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=edshlc&AN=edshlc.001110729.4&site=eds-live&scope=site
Chen, J., Lin, T.-J., Justice, L., & Sawyer, B. (2017). The Social Networks of Children With and Without Disabilities in Early Childhood Special Education Classrooms. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-017-3272-4
Cobley, D. S. (2013). Towards economic participation: examining the impact of the Convention on the Rights of Persons with Disabilities in India. Disability & Society, 28(4), 441-455. https://doi.org/10.1080/09687599.2012.717877
Cohen, S. (2004). Social relationships and health. American Psychologist, 59(8), 676-684. https://doi.org/10.1037/0003-066x.59.8.676
Cornielje, H. (2009). The role and position of Disabled People's Organisations in community based rehabilitation: Balancing between dividing lines. Asia Pacific Disability Rehabilitation Journal, 20(1), 3-14.
Dalgard, O. S., Bjork, S., & Tambs, K. (1995). Social support, negative life events and mental health. British Journal of Psychiatry, 166(1), 29-34.
Deepak, S., Rufino dos Santos, L., Griffo, G., de Santana, D. B., Kumar, J., & Bapu, S. (2013). Organisations of Persons with Disabilities and Community-based Rehabilitation. Disability, CBR & Inclusive Development, 24(3), 5-20. https://doi.org/10.5463/DCID.v24i3.269
Dhungana, B. M., & Kusakabe, K. (2010). The role of self-help groups in empowering disabled women: a case study in Kathmandu Valley, Nepal. Development in Practice, (7), 855. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=edsbl&AN=RN276741607&site=eds-live&scope=site
Eisenman, L. T., Farley-Ripple, E., Culnane, M., & Freedman, B. (2013). Rethinking Social Network Assessment for Students with Intellectual Disabilities (ID) in Postsecondary Education [Article]. Journal of Postsecondary Education & Disability, 26(4), 367-384. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=95314762&site=eds-live&scope=site
Ell, K., Nishimoto, R., Mediansky, L., Mantell, J., & Hamovitch, M. (1992). Social relations, social support and survival among patients with cancer. Journal of Psychosomatic Research, 36(6), 531-541. https://doi.org/10.1016/0022-3999(92)90038-4
Grills, N. J., Hoq, M., Wong, C.-P. P., Allagh, K., Singh, L., Soji, F., & Murthy, G. V. S. (2020). Disabled People’s Organisations increase access to services and improve well-being: evidence from a cluster randomized trial in North India. BMC Public Health, 20(1), 145. https://doi.org/10.1186/s12889-020-8192-0
Hanneman, R. A., & Riddle, M. (2011). Concepts and measures for basic network analysis. In The SAGE handbook of social network analysis (pp. 340-369). SAGE.
Harel, D., & Koren, Y. (2002). A fast multi-scale method for drawing large graphs. Journal of Graph Algorithms and Applications, 6(3), 179-202.
Henderson, C., Mannan, H., & Power, J. (2017). Disability Inclusive Development Good Practices: Level of Commitment to Core Concepts of Human Rights. Disability, CBR & Inclusive Development, 28(3), 32-55. https://doi.org/10.5463/DCID.v29i3.608
Holt-Lunstad, J. (2015). Social Integration, Social Networks, and Health. In J. D. Wright (Ed.), International Encyclopedia of the Social & Behavioral Sciences (Second Edition) (pp. 365-370). Elsevier. https://doi.org/https://doi.org/10.1016/B978-0-08-097086-8.14040-1
Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social Relationships and Mortality Risk: A Meta-analytic Review. PLoS Medicine, 7(7), e1000316. https://doi.org/10.1371/journal.pmed.1000316
House, J. S., Landis, K. R., & Umberson, D. (1988). Social relationships and health. Science, 241(4865), 540-545.
Kleintjes, S., Lund, C., & Swartz, L. (2013). Organising for self-advocacy in mental health: Experiences from seven African countries. African Journal of Psychiatry, 16(3), 187-195. https://doi.org/10.4314/ajpsy.v16i3.25
Knox, S. S., & Uvnas-Moberg, K. (1998). Social isolation and cardiovascular disease: an atherosclerotic pathway? Psychoneuroendocrinology, 23(8), 877-890.
Kreider, C. M., Bendixen, R. M., Young, M. E., Prudencio, S. M., McCarty, C., & Mann, W. C. (2016). Social networks and participation with others for youth with learning, attention, and autism spectrum disorders. Canadian Journal of Occupational Therapy. Revue Canadienne D'Ergothérapie, 83(1), 14-26. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=s3h&AN=112724139&site=eds-live&scope=site
Kumaran, K. P. (2011). Role of Self-help Groups in Promoting Inclusion and Rights of Persons with Disabilities [article]. Disability, CBR & Inclusive Development, Vol 22, Iss 2, Pp 105-113 (2011)(2), 105. https://doi.org/10.5463/dcid.v22i2.78
Leung, M., Devine, A., Singh, L., Yip, T.-W., & Grills, N. (2019). ‘With Hope to Help Ourselves and Others’: The Impact of Disabled People’s Organisations on the Lives of Persons with Disability in Uttarakhand, North India. Review of Disability Studies: An International Journal, 15(2).
Lin, N., Fu, Y.-c., & Hsung, R.-M. (2001). The Position Generator: Measurement Techniques for Investigations of Social Capital. In N. Lin, K. Cook, & R. S. Burt (Eds.), Social capital: Theory and research (pp. 57-81). Aldine de Gruyter. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ecn&AN=0651737&site=eds-live&scope=site
MacDonald, G., Saltzman, J. L., & Leary, M. R. (2003). Social approval and trait self-esteem [Article]. Journal of Research in Personality, 37, 23-40. https://doi.org/10.1016/S0092-6566(02)00531-7
Marin, A., & Wellman, B. (2011). Social network analysis: An introduction. In The SAGE handbook of social network analysis (Vol. 11). SAGE.
McCausland, D., McCallion, P., Cleary, E., & McCarron, M. (2016). Social Connections for Older People with Intellectual Disability in Ireland: Results from Wave One of IDS-TILDA [Article]. J Appl Res Intellect Disabil, 29(1), 71-82. https://doi.org/10.1111/jar.12159
Miles, S., Fefoame, G. O., Mulligan, D., & Haque, Z. (2012). Education for Diversity: The Role of Networking in Resisting Disabled People's Marginalisation in Bangladesh. Compare: A Journal of Comparative and International Education, 42(2), 283-302. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=eric&AN=EJ958957&site=eds-live&scope=site
http://dx.doi.org/10.1080/03057925.2012.650482
Mithen, J., Aitken, Z., Ziersch, A., & Kavanagh, A. M. (2015). Inequalities in social capital and health between people with and without disabilities [Article]. Social Science and Medicine, 126, 26-35. https://doi.org/10.1016/j.socscimed.2014.12.009
Patterson, T. L., Shaw, W. S., Semple, S. J., Cherner, M., McCutchan, J. A., Atkinson, J. H., Grant, I., & Nannis, E. (1996). Relationship of psychosocial factors to HIV disease progression. Annals of Behavioral Medicine, 18(1), 30-39. https://doi.org/10.1007/bf02903937
Perkins, J. M., Subramanian, S. V., & Christakis, N. A. (2015). Social networks and health: A systematic review of sociocentric network studies in low- and middle-income countries [Article]. Social Science and Medicine, 125, 60-78. https://doi.org/10.1016/j.socscimed.2014.08.019
Polu, W., Mong, A., & Nelson, C. (2015). Social and economic inclusion of people with disabilities: practical lessons from Bangladesh. Development in Practice, 25(viii), 1182-1188. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ich&AN=ICHA950226&site=eds-live&scope=site
Rosenquist, J. N., Fowler, J. H., & Christakis, N. A. (2011). Social network determinants of depression. Molecular Psychiatry, 16(3), 273-281. https://doi.org/10.1038/mp.2010.13
Saarinen, M., Holm, L., & Uusitalo-Malmivaara, L. (2018). Changes in the Social Networks of Three Women with an Intellectual Disability: A Qualitative Follow-Up Study. Journal of Education and Learning, 7(3), 76-86. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=eric&AN=EJ1173106&site=eds-live&scope=site
Schaefer, C., Coyne, J. C., & Lazarus, R. S. (1981). The health-related functions of social support. Journal of Behavioral Medicine, 4(4), 381-406. https://doi.org/10.1007/BF00846149
Seeman, T. E., Berkman, L. F., Kohout, F., Lacroix, A., Glynn, R., & Blazer, D. (1993). Intercommunity variations in the association between social ties and mortality in the elderly. A comparative analysis of three communities. Annals of Epidemiology, 3(4), 325-335.
Shakespeare, T. (1993). Disabled people's self-organisation: a new social movement? Disability, Handicap & Society, 8(3), 249-264. https://doi.org/10.1080/02674649366780261
Smith, M., Ceni, A., Milic-Frayling, N., Shneiderman, B., Mendes Rodrigues, E., Leskovec, J., & Dunne, C. (2010). NodeXL: a free and open network overview, discovery and exploration add-in for Excel 2007/2010/2013/2016. In Social Media Research Foundation. https://www.smrfoundation.org
Uchino, B. N., Cacioppo, J. T., & Kiecolt-Glaser, J. K. (1996). The relationship between social support and physiological processes: a review with emphasis on underlying mechanisms and implications for health. Psychological Bulletin, 119(3), 488-531.
Young, R., Reeve, M., Devine, A., Singh, L., & Grills, N. (2016). A realist evaluation of the formation of groups of people with disabilities in North India [article]. Christian Journal for Global Health, Vol 3, Iss 2, Pp 72-90 (2016)(2), 72. https://doi.org/10.15566/cjgh.v3i2.145
Young, R., Reeve, M., & Grills, N. (2016). The Functions of Disabled People's Organisations (DPOs) in Low and Middle-income Countries: a Literature Review. Disability, CBR & Inclusive Development, 27(3), 45. https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=edo&AN=126291196&site=eds-live&scope=site
Zhang, C. (2017). 'Nothing about us without us': the emerging disability movement and advocacy in China. Disability & Society, 32, 1096-1101. https://doi.org/10.1080/09687599.2017.1321229
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Oct 25, 2022
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Author Biographies
James Montgomery, Tearfund Australia
James Montgomery (MPH), formerly an International Program Officer of The Leprosy Mission Australia at the time of the study, now holds the same title at Tearfund Australia. James was also studying a Masters of Public Health at The University of Melbourne at the time of the study.
Andrew Sithling, Nepal Leprosy Fellowship
Andrew Sithling is currently working as the Director of Nepal Leprosy Fellowship, an NGO in Province no. 1, Nepal. He has a Masters in Global Human Resource Management from University of Liverpool, UK. He has a particular interest in community transformation through Integral Mission.
Fairlene Soji, CBM India Trust
Fairlene Soji currently works as a programme manager: education and knowledge management, at CBM India Trust. She has done her masters in sociology and has been working in the field of disability and development for more than 19 years.
Matthew Reeve, Nossal Institute for Global Health, University of Melbourne
Dr Matthew Reeve MBBS, MPH is a Senior Technical Adviser at Nossal Institute for Global Health, University of Melbourne. He has extensive experience in teaching primary health care and project management, and lived and worked in South Asia for many years.
Nathan Grills, Nossal Institute for Global Health, University of Melbourne
Associate Professor Nathan Grills (MBBS, MPH, DPHIL, DPH) is a Public Health Physician at the Nossal Institute for Global health, University of Melbourne and the Australia India Institute. He works on non-communicable diseases, community health and disability largely in the Indian context.