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.
What does it mean to carry a mindset that disability in society is a gift that we cannot live without? That people experiencing disability and those gifted by fullness of presence of such people in their lives carry important skills, lessons, and technique that have benefit to all people? This bit of beautiful work illustrates just such a moment, where we can recognize the methods drawn from work within the lives of people with disability.
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.
Dr. Rita James and Dr. Neelam Sodhi believe that working toward equity and justice for people with disability in India must extend beyond family members and professionals in the field. Each of them work within organizations to make change, and Asha Kiran School in Bengaluru as well as Ashirwad in Ludhiana are fine examples of families and professionals working hand-in-hand for change. But change must come from all people, as we tune-in together on creating space for everyone.
The artisans and craftspeople of native places know that their art and craft carries the knowledge of those that have gone before; the honed skills of producing something beautiful, meaningful, and useful with your hands; and the knowledge that a created object is more than its form and shape.
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.