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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.

Grief is a universal human experience as beloved elder family members pass from this world. Mukund, a young man living in Lucknow, experienced just such a loss this past year. He, along with his brother, grew up with his “Amma” at the center of his life, as she took care of him and his brother and created an atmosphere of warmth and love at the heart of the home. With his parents both working professionals, Amma was in many ways mother of all, bringing everyone together under the roof of hospitality and love. The entire family looked to Amma with deep respect and gratitude, as she put the needs of all others before herself.

Valued social roles often lead to very good things in life – important things like belonging, freedom, a decent reputation, and a positive self-image. This is theory – simple facts that might be very useful when supporting people with disability to live full lives.

Aratrik is a nineteen plus—almost twenty—young man. If you took a peek at his official records, including his government disability certificate, it would tell the story of a young man with significant and even so-called ‘catastrophic’ disability.

Across India, small, community-based supportive services for people with developmental disability are rising out the imaginations of families and activists. These days, such sorts of services are often fueled by the desire to create human-scale alternatives to large institutional settings.

Efforts to help people with disability to fully contribute their gifts, as well as to lead full, expansive lives requires more than hoping, wishing, and half-hearted efforts. In fact, much of the work of elevating the status of marginalized people goes against the grain of societal devaluation, and so it stands to reason that many good efforts are crushed early and decisively. The best efforts can be thwarted easily by circumstances, mind-sets, and disappointments. For this reason, our efforts to help elevate people’s lives must be made consistently, thoughtfully, pointedly, with focus, steadily, and often over time. The below story of losing and regaining family illustrates this so powerfully.

For many people, separation from families becomes a life-defining loss, a grief that comes to reside deeply within. A sense of being adrift, unmoored, and unrooted may be metaphors for how this loss is experienced. For Kiran, whose loss of family happened early in her life, this seems to have been her experience. While in the institutional setting, where she remained for years, it was simply known as a fact that she had a sister, but no details were known, an assumption that followed her over the years. In fact, her records stated that there was no reasonable hope of reunification or contact.

After re-establishing herself as a neighbour in a small community, those who were supporting her began to explore whether she might not have remaining family who could in fact be located. They did not stop there – they began to ask, to look, to actively seek such connections. It was not long before someone who knew someone who knew someone else was able to locate the region where her sister was reputed to live. It was many hours of travel away, and Kiran’s sister had no telephone.

But they did not stop there. They located the local shop close to where Kiran’s sister lived. They found that she sometimes used the shop’s phone. They got a message to her.

They connected and were told her sister would not be able to come to visit because the travel was long.

But they did not stop there. They made sure Kiran and her sister were able to talk periodically on the phone, building their relationship.

But they did not stop there. They arranged for a video call so they could see each other for the first time in many years.

But they did not stop there. They organized transportation until finally, a reunion happened, as eight of Kiran’s relatives re-entered her life with great joy. Kiran seems bigger somehow, more sure of herself, and more rooted, and some of that at least can be attributed to her knowing “her people.”

This reunion is instructive in many ways, but what is standing out right now is how efforts to assist people with disability to have strong connections and full, rich lives require real focus. The team who supports Kiran did not rely on rumor and assumption. They explored and investigated. They did not give up. Their detective work spanned months of thinking through next steps. Disappointments were met, acknowledged, and the goal was again placed on the horizon. New efforts were made; different directions were explored. That FOCUS was required to bring a result that matters. This resolve and even stubborn refusal to accept assumptions, to move on to easier tasks, and not to give up bore such important fruit in Kiran’s life. A lot of people are richer for it.