“You mean I’m not weird?”
For nearly 37 years, Ankur Kayesth had lived with a quiet uncertainty he could never quite name. Growing up with a younger brother with cerebral palsy and a learning disability, he learnt early to adjust, cope silently, and make space for a family life organised around care. It was only much later, during a consultation with his brother’s psychiatrist, that he heard something that reframed decades of experience: siblings of children with disabilities often need support too.
“That’s when,” he recalled, “countless moments from my childhood suddenly made sense.”
Stories like Kayesth’s were at the heart of 'Siblings kiInclusive Duniya', an initiative launched on April 11 by the Sarvodaya Collective to highlight siblings of people with intellectual and developmental disabilities. The programme brings together educators, disability advocates and mental-health practitioners to expand the “circle of care” around siblings who often take on long-term caregiving roles without formal recognition.
Founded in 2020 during the start of the COVID-19 outbreak, the Collective emerged from a concern that people with intellectual disabilities, and their families, were being overlooked even as public attention focused on schools, workplaces and the elderly.
Founder Pooja Sharma remembers one moment that crystallised the problem.“My own brother wasn’t prioritised for vaccines in the early rounds,” she said. “Even though people with intellectual disabilities are at relatively high risk. That’s when I realised how little understanding existed about what this community actually needs.”
The absence, she said, is rarely intentional. It is structural and often invisible. Families adapt quietly. They plan outings around sensory triggers, weigh whether public spaces will be welcoming, and prepare for schools that may not accommodate differences. Over time, exclusion becomes routine enough to disappear from public view altogether.
No invitations
“One mother told me she invites everyone for her daughter’s birthday,” Sharma said. “But nobody invites her back.”
As the Collective worked more closely with families, another pattern became clear: siblings were already playing long-term caregiving roles, but without recognition or support.
“In India there’s a lot of focus on parents,” Sharma said. “But very little acknowledgement of siblings, even though many of them eventually become caregivers.”
Intellectual disability affects roughly 2% of India’s population, according to a meta-analysis of epidemiological studies conducted over six decades in the country (Russell et al, 2022, World Journal of Clinical Pediatrics), yet research on siblings remains limited. A cross-sectional study of families of children with intellectual disability in India found that over 80% of siblings reported measurable psychosocial impacts, including on emotional wellbeing, peer relationships and everyday participation.
Caregiving often begins early and quietly, shaping decisions about careers, migration, relationships and independence.
“Guilt is very common. You’re travelling, going out for coffee, moving forward in life and you’re constantly thinking, my sibling doesn’t have access to this.” Alongside guilt comes attentiveness. Many siblings describe becoming hyper-vigilant - quick to notice exclusion and ready to step in when needed.
‘I also raised myself’
For Pratika Madhur, those responsibilities began young, at the age of 10. Frequent trips between Bengaluru and Mysuru during a sibling’s hospitalisation meant learning early how unpredictability could reshape daily life. Over time, she learnt sign language, accompanied her sibling through therapy sessions, and discovered that care could strengthen their relationship. “The bond became stronger,” she said. “It became something we were building together.”
“We often misunderstand what a person’s abilities are,” Madhur said. “Especially socially. Just because school doesn’t feel like home to someone doesn’t mean they aren’t thriving elsewhere.”
Yet for many siblings, the hardest part is not responsibility itself—but the absence of language to explain it.
That surfaced repeatedly during the Collective’s sibling circles. One participant described how hearing others speak helped her recognise her own experience for the first time. “All these years,” she said, “I had my parents. But I also raised myself.”
Moments like these shape what the organisation calls “generative listening”- creating spaces where siblings can speak openly about experiences they may never have previously named. “You don’t need to know what autism feels like,” Sharma said. “You just need to remember how it felt the last time you were left out.”
Today, the Collective runs awareness programmes, school-based inclusion initiatives, and a sibling-focused support framework to embed inclusion in everyday practice. Schools remain key, though many still report having no neurodivergent students often reflecting underdiagnosis and exclusion. The organisation also focuses on training mainstream teachers to make classrooms more accessible.
For Sharma, the goal is not to make siblings the centre of the conversation, but to ensure they are no longer invisible within it. Most of all, she hopes fewer people will reach adulthood carrying questions like Kayesth’s; waiting decades to discover they were never alone.