For years, I have followed Jo Chopra-McGowan’s life and work online—reading her words, smiling at the photographs she takes, and watching her talks. I feel I know her so well that I am terrified of not being able to do justice to her grand, inspirational story within the space of this column. I ask myself, what would Jo do? The answer is that she would get straight to the point.
Jo Chopra-McGowan, 60, is the co-founder and director of the Latika Roy Foundation (LRF), a voluntary organization based in Dehradun, Uttarakhand, that provides specialized services and support to families and children with disabilities. She is also a prolific writer.
Chopra-McGowan is an American who has been living in Dehradun with her husband, Ravi Chopra, for 30 years. Chopra, a research scientist, retired as the director of the People’s Science Institute. They have three grown children—Anand, Cathleen and Moy Moy.
Moy Moy was born 12 weeks premature, the 13th child of farmers who could not afford to take care of her. A series of coincidences and personal decisions led to Chopra-McGowan and Chopra adopting her as their third child.
Despite a diagnosis of mild cerebral palsy, Moy Moy was walking, talking and making charming conversation at the age of 4. At 5, she developed seizures and began to regress. By 10, she could no longer speak, and by 16, she had quadriplegia. She needed a wheelchair to get around and ate through a feeding tube surgically inserted in her stomach. She is 28 now and severely disabled.
How does one live with the slow loss of one’s child? How does one hold on to the memories of when she was so much more than she is now?
In a letter to her 25-year-old self on her blog, Chopra-McGowan writes: “Moy Moy’s disability is going to be your ticket to a new life, a life you could never have imagined—not even in your wildest dreams. She’s going to introduce you to some of the most amazing people on the planet and you are going to laugh louder, dream bigger…she is going to teach you about a whole new world beyond competition, ambition and personal striving. She’s going to help you build an institution that will change peoples’ lives. She’s going to show you a different way to live.”
To meet Moy Moy’s special needs, Chopra-McGowan co-founded the LRF, named to honour Latika Roy, a pioneer in Montessori education in India. What may have started as “just a school for Moy Moy” has now evolved into a network of centres that provide skilled early intervention for families, vocational training for adults with disabilities, and training for staff who work in this field. What stands out about the work of LRF and its team is the happiness, energy and optimism that they radiate, attracting specialists and interns from all over the world to work with them and inspiring others to collaborate and grow.
“We practise inclusion in everything that we do and we know that it’s not just about disability. It’s about accepting people as they are, with all their weaknesses and difficulties, and creating a world where it’s easier to be good and to do good,” says Chopra-McGowan.
Over the years, Chopra-McGowan has written about her fears and anxiety as articulately as she has announced the triumphs. She writes about fatigue and despair and the miracles that bail them out. What emerges is a story full of grit and grace, laced with humour and generosity. A story of learning to ask for help, as much as striving for self-reliance.
“Just leap. The net will appear,” Chopra-McGowan is quoted as saying on the LRF website. I ask her to elaborate.
“The most dramatic example was in 2011 when we were financially depleted. Desperate, I reached out to a wealthy friend and asked her for ₹8 lakh to get through the next two months. I shared that my dream was to have enough to run LRF for a year. I would then stop running from one fire to another and put systems in place.
“She sent me the ₹8 lakh. Then she sent another cheque for ₹1 crore with a note saying—Put your systems in place.”
Chopra-McGowan says that single act of faith changed her leadership style, and, in some ways, her view of herself. “I’d been saying that sort of stuff for years but I never believed it until someone else actually took me at my word,” she says.
“What sustains you, Jo?” I ask her, trying to tap into the core of the story. Miracles can be exhausting too.
“I am happy by nature,” she answers quite simply. “I like most people immediately, I have a good sense of humour and I appreciate small, silly things. This is not anything to take credit for—I’m just lucky.”
“How do you compensate for the sense of loss that seems to always come tagged with love?” I ask her. “Love made you leave family and a country behind. Adopting Moy Moy came with its challenges. Anand and Cathleen have grown up and live in other countries.”
“My mother used to say that I had enlarged their world in ways they could never have imagined. She was part of an Indian family because of me,” says Chopra-McGowan. “Remembering that helps me with my own children.”
“Dehradun gave us Moy Moy and Moy Moy gave me my life’s purpose. She has taught us to slow down, and, at the same time, she’s taught us to hurry up and make a difference.
“Anand is an entrepreneur who is married into a Chinese family and has relatives in Beijing. Cathleen is a scholar of ancient texts who is fluent in over a dozen languages. Her insights have made me rethink my faith. Her husband is an Islamic scholar from a British Jewish family. He is hilarious, and also fluent in Hindi, Urdu and Persian.”
Over the years, Chopra-McGowan and I have shared many family anecdotes with each other. In an online essay titled “Growing Old With Moy Moy”, Chopra-McGowan writes:
“A child with a disability does put additional strain on the already challenging work of sustaining a strong marriage. The good news is that those that do survive are triumphs of creativity, imagination, loyalty, resourcefulness and the deepest, deepest admiration.”
“How and what should we write about Ravi?” I ask, referring to her husband. “The one who is always there, yet not so visible online.”
“Ravi is strict, disciplined, workaholic and puritanical. But also silly, relaxed and funny. We are so chalk and cheese, Natasha,” says Chopra-McGowan. “I am fun-loving, disorganized, outgoing. Somehow it works. We are best friends.”
What inspires me most about Chopra-McGowan is that she is always learning. She insists on hope and positivity. On being impulsive, never giving up, and believing in the power of the community.
“Impulsiveness, in fact, may be exactly what we need,” she writes. “Don’t think too much. A baby needs a home. She’s tiny. Maybe disabled. Maybe about to change the world. That’s the one for us. Grab her.”
Then Jo Chopra-McGowan sticks to her word and spends her life doing what needs to be done with love, dedication and attention.