Singing Beyond the Choir

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.

It takes a certain kind of bravery to reach into unknown territory, to the parts of society that have sometimes worked against rather than for the well-being of people with disability. Recognizing that the words of physicians carry great weight and that those words may be delivered to families in ways that set the trajectory for a strong full life or may reinforce the stereotype of low expectations drove Rita and Neelam’s decision to gather with physicians and activists together to carve out areas of agreement and common concern. 

Beyond Choir photo2Twenty-four people gathered in a Zoom room with some trepidation – medical students, neurologists, orthopedic surgeons, dentists, psychiatrists – all together with Neelam and Rita to talk about what doctors can do to bridge the gap between the way things are and they way they could be. As the discussion warmed up, it became clear that this was not a group vested in pathologizing disability, but instead a group of interested, engaged citizens who also want better for people with disability. Together, they were able to pinpoint and express so many problems with the way the medical profession treats people with disability. They also had a surprising handle on better ways, including sensitizing medical students early on in their training. Their work during this session may bear fruit in their own medical practice, and impact people with disability and their families.

On the other hand, perhaps the biggest learning was that families and advocates can step beyond the safe boundaries of keeping the conversation within the echo chamber of our own social and professional circles. It was a simple act of courage to take the message outside our comfort zone and then find that many people in the world are open to creating a welcoming world for people with disability from the first moments of life. Physicians have a unique role in helping or harming, and Rita and Neelam learned that at least this group is invested in helping.