Nothing About Us Without Us
By Leela Raj
Editor’s note: In 2022, Keystone Institute India co-facilitated and co-organized two advocacy retreats geared toward assisting people with developmental disabilities to take on leadership roles in their communities, as well as in the national self-advocacy movement.
Beyond Happy
By Amee Nagraj, advocate, SRV leader, and Sanjana’s mother
“A happy experience always snowballs into something more.” – Amee Nagraj
By Shalini Bisht
“A bend in the road is not the end of the road…unless you fail to make the turn.” – Helen Keller
This is a story of hope and persistence. This is the story of a woman called Mani.
The famous singer Bob Marley once said, “You never know how strong you are until being strong is your only choice.”
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?