Lessons from the First Weeks in India

Betsy Neuville and Genevieve Fitzgibbon arrived in New Delhi last week to launch major programmatic initiatives in the inclusion of people with disabilities, particularly developmental disabilities and mental disorders, across India.  The first few days of work shed a small light on the experience of being different, and the need to find allies and supporters to walk the journey together.

Our initial work here in India has already proven to be the source of many lessons which will likely serve us well. As Genevieve and I enter into a vastly different society, with different rules, norms, ways of doing things, and unfamiliar and confusing ways of interacting and relating to others, we get an infinitesimally small experience of what it must be like to be living  next to the typical world, but not fully part of it. Although uncomfortable, it is an experience worth having, and one we will do well to keep close to our hearts and minds as we begin to do the hard work of walking with people with disabilities and those who care about them to create belonging, build strength, and push the boundaries of Indian society to include all.

Of course, we should be careful to compare the experience of two seasoned professionals with a host of valued roles making their way in India with resources and a network of supporters both here and in the US. We also should not pass on the chance to capitalize on our small and temporary experience—a tiny taste of being obviously different from others, having a hard time communicating with others, and experiencing the relentless stress involved in being confronted with situations where everyone seems to know what is going on except you.  For us, the experience of being unable to do things quickly and easily is frustrating and consumes a lot of energy and time.  I tried to explain to my husband, Thomas, how busy we have been this week, and all that we accomplished – setting up phone service, equipping an office, negotiating currencies, working with a myriad of workers, repair persons, drivers, etc.  It seemed like a short list, until he reminded me of the simple fact that, when we are operating in situations where we don’t “belong”, things are exponentially more difficult and our competencies go way down.

Important reminder, that people with disabilities experience continuously, isn’t it? One of the takeaway lessons is that, in order to enter into the world, others who agree to walk beside you, connect you, and simply stand with you make things happen.

So here in New Delhi, our wonderful “landlord family” who lives upstairs from us, has taken us under their wing and assisted us with finding everything from good places to shop to taxi companies that are trustworthy. They have connected us with bankers, grocers, and provided all types of support.  They keep an eye on us, stopping in, inviting us for breakfast, welcoming us with plants that periodically show up at our door, lovingly cared for by the elder botanist grandmother.  One small connection with one family, and the ability to negotiate life, get things done competently, and we become daily more competent and able to manage.

This little magic sparked by a family—Dr. Al Condeluci called these types of connectors ‘gatekeepers’ in his book “Interdependence”— makes the seemingly impossible possible. They also make a connected life visible and real. I’ll take this lesson in grace, humility, and the power of human connection in making all things possible forward in our work here in India.

The Keystone Institute India is an educational institute on disability, community, and innovation, strengthening the inclusion of people with disabilities in India. Formed in partnership with The Hans Foundation, this national institute exists to provide training and consultation related to the creation of responsive community supports for men, women, and children living in India with disability. It focuses on supporting individualized alternatives to congregate care and institutionalization. For more information about the Keystone Institute India, visit www.keystoneinstituteindia.org.