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People with disabilities often lead lives that are congregated and segregated. Relegated to the margins of society, they are locked up in spaces that sometimes do not even see what most of us take for granted.

What does living at home mean? The answer to that question may be very different for different people. Many people with disabilities across India, particularly those who come from backgrounds of material poverty, have been stripped of home, and are seeking connections with family and roots. Choices and freely given relationships are so important and valuable in all of our lives, and yet are frequently denied to those who have disabilities and even more so to those who have been living in institutions.

Across India and the world, the institutional experience of being apart and away, locked in, and separated from society carries a huge number of wounding life experiences along with it. Sometimes the impact of the profound rejection and isolation from community causes people to go inward, so they survive by being quiet, compliant, and not speaking above a whisper. In some situations, this is a survival instinct that can save life or limb in the dangerous places that are the custodial institutions in which people are locked away, sometimes for life, simply because of a disability label.  Ms. Vinita had been abandoned at just such a place, rejected by her own family. One can only imagine the circumstances that would lead a family to feel they had to abandon their sister, or their mother, or their daughter.  Bowed down by circumstances, totally abandoned by her family, she lay lost and alone, a stranger in a strange land; she did not know the language, the people, or the circumstances that led to her incarceration.  She could not speak in Hindi. She was compliant.  Obedient. Broken. Nearly invisible.

A strong and confident person is built from the many and varied experiences she has had in life. In fact, all of us are shaped and formed by those experiences. They prepare us for adversity, help us realize our preferences and options, and steer us toward the lives we choose. Many people with disability have lived such limited lives, whether because of well-intentioned overprotection, segregation and separation from everyday life, or imposed poverty.

Janaki Amma loves hosting, making chai, and doting on her daughter. She is a woman with cognitive disabilities, with a frame frail and a great sense of humor. As we sit down for tea, she wants us to see her new shoes and clothes that she has folded with great care. She insists we have tea and biscuits.

Relationships and a sense of belonging fuel our lives, and give it meaning and a desire to thrive against all odds. However, in the lives of many people with disabilities, freely given, unpaid relationships are few, if at all. And this wound can shake the very core of one’s being.

For many people with intellectual and developmental disability, especially those in segregated programs, waiting often becomes one of life’s most frequent activities. Waiting for someone to listen, waiting for the next activity, waiting for a family visit, waiting for the next meal, waiting for someone to assist you. For Sumitra, institutionalized for over a decade in a shelter home, each day has been much like every other day, a routine of sleeping, eating and waiting filling the hours. Sumitra committed no crime, did nothing wrong, and came to this waiting place from other waiting places before that. There seemed little hope until a year ago when she was told that she would have the opportunity to live in a regular home, to have freedom in the community, to possibly work, earn money, and live her own life. It seemed too good to be true, but Sumitra visited her future home and indeed, it seemed possible. Maybe for the first time in decades, she seemed to feel hopeful.

When you first hear about Rick, you will likely hear all sorts of good things about him.

“He knows what he wants – he’s a definite kind of guy.”

“He’s a good traveler by road and train.”

“He’s a thoughtful, observant guy, easy going and kind.”

In fact, last September, that’s how a group of Rick’s family members and friends described him to others, all of whom gathered to think about his future.

With that lovely description as a foundation, now we were ready to meet Rick in a place that let us see him. No one mentioned the disability he experiences, any so called “deficits.” Although having autism is a simple fact – some might consider it a problem, others might consider it an attribute – it does not define this young man with so much possibility laid out in front of him. Instead, we looked to the qualities that matter the most in thinking about someone’s full life, even someone’s calling. The way that people who know and care about Rick created such a powerful interpretation of him to the rest of us meeting him for the first time, that we were all able to envision him easily as the entrepreneur running a juice stand, a skier, a gamer, a bachelor chef, a tech-savvy man who is an excellent communicator.

At the close of the process, one of the circle members noted that this successful planning process was embedded in Rick’s family and friends interpreting him so well to others present. There is a powerful role for each of us walking with people with disability to contribute to this process of interpretation – others look to those of us next to people with disabilities as guides, and when we say positive things in respectful ways, it puts good things into the minds of others about the person, and maybe about all people with disability. What a powerful lesson Rick’s family and friends taught us.