sumitra1For 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.

But then, lines got crossed, the message went south, the path to freedom was blocked by tangled paperwork and bureaucratic snafus, tiny power struggles and other pressing priorities. Days passed, and then weeks, and at first, everyone assured her it would happen soon. Months dragged on, and advocates became distracted. It seemed really complicated to untie knots. Some said, “Just swap someone else who is easier to get out.” Someone not so tied up, perhaps. Every few weeks, visitors from the community would try to avoid Sumitra as she stood just outside the institutional door waiting for an update, a word of hope, for someone to answer her eyes, increasingly less hopeful. Everyone would say, “Just wait, we are trying.”

Fortunately, a small band of advocates kept trying to untie those knots by calling just the right person, by writing another email, by reminding the knot-tiers that “Sumitra is waiting for you” and “Sumitra is a person, not an inmate.” For eight months, Sumitra waited just outside that door for it to open, and open it did, finally. She walked through those three locked gates out from under that watchful gaze of security guards into a future where things happen. Where each day presents new experiences, new possibilities, and a fresh start. Where a day of engagement and challenge makes it worth getting tired at the end of a satisfying day.

This is a rare ending of a story that plays out across the country, as institutionalized people wait for a change in policy and change in practice, or a way to open doors somehow. It was not luck that gave this story a different ending. It was a small handful of people who hung in there with Sumitra, who kept on trying even when it was difficult, and who resisted the constant encouragement to forget about Sumitra. A rare ending, but only the beginning for Sumitra. Those who are walking beside Sumitra in her new life agree that they will think twice before asking Sumitra to “just wait.”