~Written by Jasmine L. Hamilton (Contact: lajuaniehamilton@gmail.com; Twitter: @jasminogen) with Michaela Cisney (Twitter: @priyamglobal)
A mother supports her son during a therapy session in Hope Special School, Chennai, India.
Disability affects an estimated 1 billion persons worldwide (1). An estimated third are children, the majority of whom (>80%) live in low and middle income countries (LMICs) (1-2). Children affected by disability and their families face significant challenges, including social isolation and stigma, high risk of poverty and violence, minimal resources and programming, and inadequate services, to name a few (1-2). Further, although the convention on the rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD) (3-4) state that children with disabilities are entitled to the rights of all children and should be provided access to health care, education and protection from violence, abuse and neglect, the current challenges faced by children with disabilities demonstrate failures in translating these values at policy, national and international levels (5-6). The millennium development goals (MDGs) for example, excluded disability from its agenda, a major oversight with dire consequences on children worldwide. For example, a recent report by Human Rights Watch revealed that in South Africa, the second largest economy in Africa, over 500,000 disabled children are unable to access primary education, an issue thought to be a prevalent problem in LMICs (1,5-6). The World Health Organization, UNICEF, and others have repeatedly outlined the shortage of research, policy, or action on behalf of children affected by disabilities in developing countries.
Fortunately, recent developments at the policy level indicate movement towards a more equitable approach for addressing disability. Most importantly, the inclusion of targets toward improving access to education and employment for disabled persons in the sustainable development goals (SDGs), stands to profoundly affect the way disability is perceived worldwide, with a significant possibility of increased access to healthcare, education, and other services available to children affected by disability.
These developments are bringing optimism and a surge of hope to organizations and volunteers that have been working tirelessly to bring about positive change in this area. I recently spoke with the director and co-founder of Priyam Global (http://www.priyamglobal.org/#who-we-are) a new NGO working to improve quality of life, opportunity, and global perception of value for the world’s poorest children who have disabilities, in an effort to outline major challenges and steps that can be taken towards creating a more equitable world for children affected by disability. What follows are her comments on some of the challenges and hopes that she has for Pryiam Global and the children with disabilities in Chennai, India who inspire her work.
Q1: What does Priyam stand for, when was it founded and what is your vision for the organization?
Michaela Cisney: Priyam is a word meaning ‘love’ that is shared among the Tamil, Hindi, and Sanskrit languages. The name was selected through a collaborative process with the children’s home we partner with in Chennai and reflects what is essential to the success of our work: a simple, abiding love for all of humanity, but especially for its children. I co-founded Priyam in July 2014, with the vision of bringing childhood disability to the heart of global health by creatively and attractively reframing the ways we look at children, ability, and value.
Q2: How many disabled children are you currently reaching and what assistance do you provide?
Michaela Cisney: Our collaborative work with a special education school and a children’s home currently reaches about 200 children affected by disability in India. We’ve been able to support and increase special nutrition initiatives to combat India’s severe child malnutrition rates, cost-share the expenses of additional therapists, provide start-up funding to selected families for self-employment opportunities, train and place national and foreign volunteers, and—importantly—take a critical role in increasing awareness and understanding of childhood disability as an urgent and relevant global maternal and child health issue.
Q3: What is your biggest challenge working in the area of CD?
Michaela Cisney: As a connector organization and catalyst, the greatest challenge we face is general low awareness in high-income countries of childhood disability realities, contexts, and opportunities for change in developing countries. Disability makes people uncomfortable, reflecting a great need for disability issues to be framed as secondary to universal values that resonate with all of us: a child’s beautiful personality, a toddler’s wellbeing and ability to thrive, a mother’s love bound by her inability to provide for her children in extreme poverty. Disability is somehow seen as “other” to these issues and so it’s a challenge to gently dismantle prejudices many of us are not even aware we hold, to then attractively frame CD in positive contexts of change and growth while also portraying urgent realities in a balanced way.
Q4: What is your greatest hope for Priyam Global and the children in Chennai that you currently work with?
Michaela Cisney: My greatest hope is that every child, in Chennai and beyond, would see the full and beautiful realization of her rights and dreams: a family that loves her without limits, a body and mind that are cared for and well, and the opportunities to explore her interests and thrive using her strengths.
To learn more about the work of Priyam Global visit www.priyamglobal.org For information on the global plan to address the challenges faced by persons with disabilities visit: http://www.un.org/disabilities/default.asp?id=1618
About Michaela Cisney
Michaela earned a Master’s in Public Health in Behavioral, Social and Community Health from Indiana University, focusing on maternal and child health, and nutrition and disease interactions. Before launching Priyam Global, she worked with Timmy Global Health to develop culturally-relevant monitoring and evaluation plans for a WASH program in rural Ecuador. In addition to her role as Executive Director for Priyam Global, Michaela works as a consultant for World Vision International (WVI), where she helps WVI communicate critical impact of community health worker programming globally for marketing and advocacy. She has also worked with WVI to design and launch a global training on individual/household health behavioral counseling (ttC). Follow her on Twitter: @priyamglobal
References:
- www.un.org/disabilities/documents/review_of_disability_and_the_mdgs.pdf
- http://www.who.int/disabilities/media/news/2012/13_09/en/
- Convention on the Rights of the Child. New York: http://www.ohchr.org/en/professionalinterest/pages/crc.aspx
- Convention on the Rights of Persons with Disabilities: http://www.un.org/disabilities/convention/conventionfull.shtml
- https://www.hrw.org/sites/default/files/report_pdf/southafrica0815_4up_0.pdf
- http://www.theguardian.com/global-development/2015/aug/18/disabled-children-poorer-countries-out-of-primary-education-south-africa-human-rights-watch-report