“You mean I’m not weird?”
For over 37 years Ankur Kayesth had lived with a quiet uncertainty he could never quite explain .Growing up with a younger sibling afflicted with cerebral palsy and a learning disability, he learnt early to cope silently, adjust and centred his family life organised around care. It was only decades 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 by the Sarvodaya Collective to highlight siblings of people with intellectual and developmental disabilities.The event brought together mental-health practitioners, disability advocates and educators to expand the “circle of care” around siblings who inevitably become long-term caregivers 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 plan outings, weigh whether public spaces will be welcoming and accessible and prepare for schools that may not accommodate a disabled child.Over time, exclusion becomes routine enough to disappear from public view altogether.
No invitations
“One mother told me she invited everyone for her daughter’s birthday,” Sharma said.“But nobody invited her back.” As the Collective worked more closely with various families,a pattern emerged: siblings were already playing long-term caregiving roles, but without recognition or support. “There’s a lot of focus on parents in India,” Sharma said.“But the efforts of siblings are rarely acknowledged, even though many of them eventually become caregivers.”
Intellectual disability affects roughly 2% of India’s population, according to a series of epidemiological studies (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, eventually ending up shaping every facet of their life from careers,relationships to independence.
“Guilt is very common.You’re travelling, going out for coffee, meeting new people and yet you’re constantly thinking, my sibling doesn’t have access to this.”With this comes attentiveness.Many siblings describe becoming hyper-vigilant - quick to notice exclusion and ready to step in whenever their siblings feel excluded.
‘I also raised myself’
For Pratika Madhur life took a turn at the age of 10.Growing up in Mysore with a disabled sibling meant frequent trips to Bengaluru during hospitalisations, reshaping her daily life.Over time, she picked up sign language, accompanied her sibling through therapy sessions, and discovered that their relationship could be strengthened by care.“The bond became stronger,” she said.“It became something we were building together.” “We often equate a person's social ability with their overall competence, misjudging their true capability,” Madhur said.“ 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 a language to explain it. That surfaced repeatedly during the event.One participant described how listening to other’s experience helped her recognise her own for the first time.“All these years,” she said, “I had my parents.But I also raised myself.”
These moments foster what the organisation calls “generative listening”- creating spaces where siblings can share experiences they have never spoken about .“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 aims to cultivate a sibling focused framework by running awareness programmes, school-based initiatives to embed inclusion in everyday practice.
Although many still claim to have no neurodivergent pupils, schools continue to be a focal topic, which frequently reflects underdiagnosis and exclusion. In order to improve accessibility in schools, the organization also focuses on training mainstream teachers.
According to Sharma, the objective is to make sure siblings are no longer invisible in the discourse rather than making them the focal point of it. Above all, she hopes that fewer kids will grow up with unresolved issues similar to Kayesth's, having to wait decades to realise they were never alone.
