Young Girls With Developmental Disabilities in the Himalayas- A Closer Look!

Shubha Nagesh, Amanda Nicole Dorsey, Colin Weiss, Ashley Darcy-Mahoney, Megha Girdhar, Spoorti Chimmalgi

Abstract


Background: Research exploring disability and gender are limited in India. The documented few opine largely about the double discrimination, impacting access and utilization of intervention services. The Latika Roy Foundation, a non-profit providing intervention services for children with developmental disabilities, found that proportionally more young males compared to females utilize their services. Consequently, these researchers aim to understand why. Procedure: 24 families participated in a semi-structured home-based interview. All their daughters had been assessed to have a developmental disability, were aged 3-10 years, were living in and around Dehradun, India, but were not currently accessing intervention services. Results: Families had a reduced knowledge about the disability, poor understanding about the urgency of early intervention, and yet a keenness to do everything possible. Limitations included remote locations, unavailable transportation, and impeding family structures. All the families reported significant concern for their daughter with a disability and had a positive approach to the challenges they faced, though they had difficulties physically accessing services. Implications: The study data challenges the predominant dialogue around the intersection between gender and disability in the region. These findings are optimistic for the future of disability and gender equality and India. 


Keywords


developmental disabilities, gender, access, barriers, intervention services

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References


Addlakha, R.,&Mandal, S. (2009). Disability law in India: Paradigm shift or evolving discourse?Economic and Political Weekly, 44(41), 62-68.

Al-Kandari, H. (2006). Parenting stressors of mothers of children with and without disabilities.Journal of the Social Sciences, 34(3), 11-30.

Arora, N. K., Nair, M. K. C., Gulati, S., Deshmukh, V., Mohapatra, A., Mishra, D., Patel V., Pandey, R. M., Das, B. C., Divan, G., Murthy, G. V. S., Sharma, T. D., Sapra, S., Aneja, S., Juneja, M., Reddy, S. K., Suman, P., Mukherjee, S. B., Dasgupta, R., . . . Vajaratkar, V. (2018). Neurodevelopmental disorders in children aged 2-9 years: Population-based burden estimates across five regions in India. PLoS medicine, 15(7), 1-19.

Buettgen, A., Gorman, R., Rioux, M., Das, K., &Vinayan, S.(2015). Employment, poverty, disability, and gender: A rights approach for women with disabilities in India, Nepal and Bangladesh. In N. Khanlou& F. B. Pilkington (Eds.), Women’s mental health: Resistance and resilience in community and society (pp. 3-18). Springer International Publishing.

Carrillo, J. E., Carrillo, V. A., Perez, H. R., Salas-Lopez, D., Natale-Pereira, A., & Byron, A. T. (2011).Defining and targeting health care access barriers. Journal of Health Care for the Poor and Underserved 22(2), 562-575.

Daley, T. C. (2002). The need for cross-cultural research on pervasive developmental disorders. Transcultural Psychiatry,39(4), 532-551.

Daley, T.C. (2004). From symptom recognition to diagnosis: children with autism in urban India.Social Science & Medicine, 58(7), 1323-1335.

Desai, M.U., Divan, G., Wertz, F.J., & Patel, V. (2012). The discovery of autism: Indianparents’ experiences of caring for their child with an autism spectrum disorder. Transcultural Psychiatry, 49(3-4), 613-637.

Dhar, R. L. (2009). Living with a developmentally disabled child: Attitude of family members in India.Social Science Journal, 46(4), 738-755.

Disability Rights Promotion International. (2009). Monitoring the human rights of persons with disabilities country report India: Summary. www.yorku.ca/drpi/files/IndiaCountryReportSum.pdf

Edwardraj, S., Mumtaj, K., Prasad, J. H., Kuruvilla, A., & Jacob, K. S. (2010). Perceptions about intellectual disability: a qualitative study from Vellore, South India. Journal of Intellectual Disability Research, 54(8), 736-748.

Fikree, F. F., & Pasha, O. (2004). Role of gender in health disparity: The South Asian context. BMJ, 328, 823-826.

Gudlavalleti, V. S. M. (2018). Challenges in accessing health care for people with disability in the South Asian context: A review. International Journal of Environmental Research and Public Health, 15(11), 2366. https://doi.org/10.3390/ijerph15112366

Hosain, G. M. M.,& Chatterjee, N. (1998). Health-care utilization by disabled persons: A survey in rural Bangladesh, Disability and Rehabilitation, 20(9), 337-345.

Jejeebhoy, S. J.,&Sathar, Z. A. (2001).Women’s autonomy in India and Pakistan: The influence of region and religion. Population and Development Review, 27(4), 687-712.

Johnson, C.P., Myers, S.M., & the American Academy of Pediatrics Council on Children withDisabilities.(2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics,120(5), 1183-1215.

Khambatta, P., &Inderfurth, K. (2012). India’s economy: The other half. Washington, DC: Center forStrategic and International Studies.

Krishnamurthy, V. (2008). A clinical experience of autism in India. World Perspectives, 29(4), 331-333.

Lakhan, R.,& Kishore, M. T. (2016). Behaviour problems in children with Intellectual Disabilities in a resource-poor setting in India - Part 1: Association with age, sex, severity of Intellectual Disabilities and IQ. Journal of Applied Research in Intellectual Disabilities, 31(1), 43-50.

Lee, C., Burke., M. M., &Stelter, C. R. (2019). Exploring the perspectives of parents and siblings toward future planning for individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 57(3), 198-211.

Mehrotra, N. (2011). Disability rights movements in India: politics and practice. Economic and Political Weekly,46(6), 65-72.

National Crime Records Bureau. (2016). Crime in India- 2016.https://ncrb.gov.in/en/crime-india-2016-0

Retherford, R. D. & Roy, T.K. (2003). Factors effecting sex-selective abortion in India. National Family Health Survey Bulletin, 17.

Shah, R., Sharma, A., Chauhan, N., Jhanda, S., & Grover, S. (2019). Understanding parental causal explanations and help seeking in attention-deficit/ hyperactivity disorder: Perspectives from a developing Asian nation. Asian Journal of Psychiatry, 41, 54-59.

Varghese, J., Grills, N., & Mathias, K. (2015). Barriers in health care access faced by children with intellectual disabilities living in rural Uttar Pradesh. Journal of Social Inclusion, 6(1), 56-70.

Wilbur, J., Torondel, T., Hameed, S., Mahon, T., &Kuper, H. (2019). Systematic review of menstrual hygiene management requirements, its barriers and strategies for disabled people. PLoS ONE, 14(2), 1-17.

World Bank, World Development Unit. (2009). People with disabilities in India: From commitments to outcomes. http://documents.worldbank.org/curated/en/358151468268839622/pdf/415850IN0Disab1ort0NOV200701PUBLIC1.pdf

World Economic Forum. (2018). The global gender gap report. World Economic Forum. Retrieved from https://www3.weforum.org/docs/WEF_GGGR_2018.pdf


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ISSN: 2454-6623