Disability rights groups in Kolkata push for better monitoring systems after death of child with autism

Our Story of the Week is from Kolkata where the death of a child with autism in school premises has sparked outrage among disability rights groups and led them to push for the setting up of a mechanism to monitor organizations working with disabled people.

Braving thunderstorm and heavy rain, representatives of prominent disability rights groups from across Kolkata gathered on Tuesday. Their aim was to brainstorm on the guidelines needed to ensure greater accountability from organizations caring for people with disabilities.

Among those present was Subhajit Ghosh, a compelling reminder of what led to this momentous meeting. It is the death of Ghosh’s son Sambuddha last week that has brought home the need to set up such guidelines.

Sambuddha, who had non-verbal autism, died during a sports day event held at his school. Called The Asha School, this is a centre specially children with disabilities run by the Army Welfare Wives Association, Eastern Command.

Sambuddha, who was less than five years old, drowned in a pool at the hydrotherapy room in the premises. The Kolkata Police is investigating the case but progress is slow. There are plans to approach the police commissioner and child protection authorities to push for quick action.

“The police is carrying out an investigation but many things are pending like the post mortem report”, says Ghosh. “The probe is also blocked by the fact that many of the witnesses are not speaking about what happened that day”.

Sambuddha’s death, the second such incident involving a child in less than six months, has galvanized the community of activists, special educators, experts and parents in West Bengal.

On Tuesday, under the umbrella of Parivaar Bengal and Manovikas Kendra, two prominent organizations, they initiated the first steps to put in place a mechanism for better monitoring.

The incident has triggered the realization that we need to set up rules and guidelines like there are in Mumbai, Kerala and Madhya Pradesh. A working committee has been set up and the coordinators will be from Parivar Bengal and the Disability Activists Forum. There was also a need felt to set up an expert committee with government officials as well as senior representatives from different organizations – Aditi Bandopadhyaya, managing trustee of SAMYA Foundation

Various useful suggestions were put forward by the 40 representatives present, which included prominent disability rights advocate Jeeja Ghosh Nag. Nag proposed the setting up of a code of conduct that should be endorsed by the state government.

Founder, Sunshine Autism Centre suggested guidelines set up should be disability wise as is the case with the Kerala guidelines.

“All those present had useful inputs and suggestions on how to prevent such incidents from happening in the future”, said Soumen Upadhyay, Parivaar Bengal. “The idea is to include all disabilities in the guidelines and eventually these will be framed and sent to the state government”.

Other examples

The idea is to develop these guidelines in a collaborative manner with inputs from groups in other states, like Together We Can (TWC), which successfully petitioned the Kerala High Court to push the state government to act in this direction .

“We are more than keen to support a parent/parent group from each state to file a similar PIL as ours demanding regulation”, says Seema Lal special educator and founding member of TWC. “They need not start from the scratch, they should be able to lead from where we have reached here in Kerala. The journey can be frustrating but we don’t do it for our children, nobody will”.

Parents, as well as the larger community working for disability rights in the state are determined to make sure that Sambuddha will not be forgotten. “Sambuddha may be no more but he has contributed to this big cause for which so many organizations have come together to set up rules and guidelines”, says Bandopadhyaya.

Watch in Sign Language