Michaela Cisney is executive director and founder of Priyam Global, a US-based international health organisation that works in India to tackle root issues of poverty for children affected by disability and their families. She also works as a freelance communications consultant for a large humanitarian agency. Michaela lives and works between Indiana, USA and Chennai, India.
The first time I see her, I am in a rickshaw and we turn a corner and I see her running down the gravel road toward us, waving, wrapped in a peach and lilac sari with her raven hair pouring out behind her. I don’t understand the Tamil words pouring from her lips but I easily understand the laughter and the sparkle in her eyes as she hops into the rickshaw and directs us to her house.
There is a single white flower caught in her hair, hovering there as if by magic.
Radha, her husband, and her two sons, aged 11 and 9, live in an 8×10′ room that costs $14 a month to rent. It’s what they can afford.
We sit on the floor and sip instant coffee, milk and sugar, stirred and melted.
With a translator, Radha answers all my questions with smiles. I ask her about Sai, her youngest, who is now nine years old. She says they thought he was fine until he was 18 months, when they took him for a routine health check and were told Sai has an intellectual disability. They had already lost precious time for early intervention therapies. How would they afford the care he needs?
Because children with disabilities in India are hidden in their homes, it is hard to know how many there are; some estimates say India has 12 million children with disabilities.
Globally, 150 million children are affected by disability and 80% live in developing countries. India is home to a third of the world’s poor, and in India’s impoverished communities, children with disabilities are stigmatized and forgotten.
“How did you feel when they told you about Sai’s diagnosis?” I ask.
Just like that, tears fill her eyes. Big, fat, shining tears that roll down her face to her chin. She says that she manages. But that her husband, still to this day, cries sometimes. That he loves Sai very much.
Only 1% of India’s children with disabilities have access to school. Sai is a lucky one: he receives free daily education through our local partner Hope Special School, which serves impoverished families in Sai’s neighborhood.
The stigma surrounding disability is extreme: families of children with disabilities are often banished from their own family circles. Their children are not linked with therapists or social workers and they face discrimination even when seeking medical care.
In Chennai, India, the average family’s income is $800 per year, or $2.10 per day.
These families can afford the very basics of what they need in terms of food, living expenses, and education. The families we reach make about $456 per year. They can afford rice, but not meat. Some fresh foods, but not much. A sleeping mat, but not a bed. Often, they are trapped in this poverty because their child has a disability and they have neither the education nor the support to offset the stresses, financial burdens, and isolation that they experience as a result.
Radha is smiling again. She says there is a private doctor nearby who treats Sai for free. That today is a good day and she feels happy. That she has some friends but not close friends— “I’m afraid of the things they will say about Sai, so I keep my distance.” That her favorite thing about Sai is that he loves to be with her. He sticks with her everywhere she goes.
Very poor families in India of children who have disabilities are a very elusive group of parents, hard to find and hard to hear, made invisible by the stigma they live under.
They are rarely mentioned in conversations on poverty alleviation, child and family health, orphan prevention, or orphan care.
My passion, through Priyam Global, is to change that.
My journey to founding Priyam Global began in 2009, when as a volunteer in India I watched a young mother bring her three year old daughter, paralyzed from the waist down, to an orphanage and then leave without her. When she turned to leave through the gate, her eyes were filled with tears.
This experience sparked four years of research. I learned that children affected by disability are stigmatized all over the world, that most people find the topic uncomfortable, and that life in India as a mother of a child with disabilities is so hard that it often leads to depression, divorce, social isolation, discrimination, child abandonment, or child death. I earned my master’s degree in behavioral, social, and community health and founded Priyam Global in 2014.
Our dream is that every mother caring for a child with special needs would have the kind of wraparound, empowering support she needs to lift her family out of poverty.
So that is exactly what we are doing.
This year, ten young mothers of children affected by disability will be trained and employed through us to make fair trade lifestyle products and skincare in addition to launching their own small independent enterprises for locally-based income.
Alongside employment they will each receive individualized counseling and mentorship, group parenting classes and social support, healthcare benefits, and childcare as a multi-level strategy for offering them the thriving, powerful life that every mother’s strength and resilience deserves.
Radha knows what it is to live by faith and to stand on hope.
Radha knows what it is to raise two boys for a month on less money than I spend in two weeks at home.
What Radha doesn’t know is that by this time next year, she will be employed through Priyam’s Global’s women’s empowerment program. She gave permission to share her story to raise awareness for the situation faced by so many families of children with disabilities in India, and she knows that we hope to design a way to support her and her priorities.
But we work hard not to make empty promises, so we can’t tell her about this program until we have the funding to cover trainings, counseling, and salaries. As soon as we do, Radha will join our first cohort of women, and she will also join our advisory board to help lead the program and use her experience to inform the details of our approach.
And someday soon, her family will be able to afford their own house.
What you can do to share some hope with Radha and Sai
The most immediate and specific thing you can do is invest in this program—100% of public donations that we receive between now and July 2016 will go directly to launching the program that will hire Radha and nine other young mothers of children affected by disability in Chennai, India.
Where does the money go?
$15 provides one hour of counseling each for all 10 women. $100 provides four months of a weekend parenting class and social outings for all ten mothers. $30 provides a sewing machine for the center. $600 provides a full time salary for Radha for six months, giving her a safety net before the goods she makes start to bring in revenue and she can earn her own salary.
Another option? You can also shop from our new line of fair trade jewelry and super soft apparel. Profits from our online shop will also help us establish the women’s center for young mothers of children with disabilities in India.
And a third option: donate $50 to help launch the center and we’ll mail you a free Elephant Tee.
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Now that you know about Radha, you’re aware of a common and changeable story that very few people in the world know. I hope you will join us.