A Jhalak shared by Maria Santamaria, Founder & CEO, Diya Foundation, Bengaluru
A Jhalak shared by Maria Santamaria, Founder & CEO, Diya Foundation, Bengaluru
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 Conservatism Corollary to Social Role Valorization states: The more vulnerable a person is the greater the need for positive compensation—even “bending over backwards”—to balance the vulnerability or devaluation and prevent additional wounds. The potential for positive impact is also higher.
When a child has a diagnosis we see a shift in the mindset – the family’s dreams and hopes shrink, and stereotypical past life experiences take center stage and disability becomes the nucleus. Navigating the maze of this new area of disability becomes the primary focus and somewhere the vision for the child gets blurred with the surrounding circumstances and disappointments. No doubt, sometimes the condition of the child also acts as a deterrent to the family’s capacity to see beyond the basic life activities. Yet, with just a few changes, life can change for the better.
Communication as defined by the Merriam-Webster dictionary as “a process by which information is exchanged between individuals through a common system of symbols, signs, or behavior.” Humans do not communicate with each other using just speech; we communicate through several mediums: gestures, postures, facial expressions, speech, written script, pictures, and several more. Speech is one of many such modes of expressing our thoughts and feelings. What of individuals who do not communicate using speech but prefer communicating through the other communication modes? They have thoughts, feelings, and opinions, too – but all too often, their voice is buried in the assumption that they have none to offer.
Names are special to everyone. It is one’s identity, depicting a uniqueness that makes you different from everyone else. Names are also cherished because it reminds us that someone loved us enough to give us a unique name with a meaning. So, what does one do when someone who controls your life changes your name without your permission, without giving you a choice?
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.
The changes we want to see as people with disability take their rightful place in the world is often made in small but potent increments. Flashy change is impressive, but faithful, small steps toward better lives and more possibilities may win the future.
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.