Blog

Across India, advocacy groups, professionals, civil society groups, NGOs, and government are working in many different ways toward dignified and full lives for people with disabilities. Although the ways of moving forward may differ, most share this goal. What would it look like if the fullness of life were to be measured? Many indexes have been tested and tried over the course of evaluating the well-being of a population, from the Happiness Index to Human Development Index. Each paints a portrait of large-scale well-being for an entire population, very useful in many ways.

Valued roles are the vehicles to the good things of life. They are not static, but are ever evolving, growing, and changing. This applies not just to people with disabilities, but also to the whole community at large.

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.