VG Keerthana, a master’s student in Politics and International Relations at Pondichery University, recounts her enriching internship experience at CSES, highlighting her insightful encounters with caregivers of intellectually disabled individuals.
During my internship at CSES, I had the opportunity to speak with guardians of students with intellectual disabilities to understand the challenges they face. One conversation with a caregiver turned into a profoundly moving narrative that shed light on the emotional toll of caregiving, the sacrifices involved, and the often-overlooked reality of caregivers’ mental and social well-being.
Maya, 45 Year old, the sister-in-law of Divya (not her real name), a 50-year-old rural woman with an intellectual disability enrolled at a Buds Rehabilitation Centre (BRC), shared her story. BRC is an initiative by Kudumbashree focusing on intellectually challenged persons above 18. Her journey began when she married and unknowingly stepped into a caregiving role she had never anticipated. Initially, Divya’s care was managed by her mother and brother. However, as her mother grew older and her brother got married, the responsibility of caregiving fell entirely on Maya.
In the beginning, Maya was overwhelmed by the unpredictable behaviour of her sister-in-law. The challenge of managing Divya’s needs while caring for her children made the situation increasingly difficult. The small household became a place of tension and stress, and balancing the demands of caregiving with the responsibilities of motherhood was an ongoing struggle. The situation took an even more complicated turn when, during the pandemic, she was diagnosed with cancer. The physical and emotional toll of her illness left her unable to care for her sister-in-law. During her treatment, other siblings stepped in, but it quickly became apparent that none were willing to provide sustained care. Divya was moved between homes, with no one willing to take full responsibility.
This situation highlights the gendered dynamics of caregiving. Women are often expected to take on the responsibility of caregiving, regardless of their own personal struggles or health issues. Maya’s experience is a clear example of how caregiving is often seen as a “women’s duty” and a role that is rarely questioned. While her husband initially shouldered the responsibility, Maya ultimately took on the brunt of the caregiving when her husband could not continue. The societal expectation that women will step into this role, even in the face of their own physical and emotional challenges, often leaves them with little room for self-care or support.
Maya brought Divya back home when treatment ended despite Maya’s fragile health. Witnessing Divya being shuffled between family members during her absence revealed the stark reality of the lack of familial support for intellectually challenged persons. Determined to retake responsibility, she resumed caregiving, now with a heavier burden both physically and emotionally. During our conversation, she shared how caregiving had completely disrupted her social life. Her interactions with her own family, friends, and neighbours became limited. The fear of judgment and the inability to leave her sister-in-law alone for long periods meant she rarely participated in social events. Over time, her social circle shrank, and she became isolated in her caregiving role.
Then, after the pandemic subsided, she received a call from a teacher at the BRC, inviting her to send Divya to the centre. This was a huge relief for her. For the first time in years, she felt a sense of hope. The BRC provided care, activities, and support that benefited Divya and offered her much-needed respite, easing the intense caregiver burden. The support offered by the BRC extended beyond the students. It provided a much-needed break from the relentless caregiving cycle for caregivers like Maya. Knowing Divya was in a safe, supportive, and professional environment allowed Maya to focus on her own needs for the first time in years. This newfound breathing space allowed her to recharge emotionally and physically, directly benefiting her ability to care for her sister-in-law.
She also pointed out that they were not enough, while the BRC offered awareness programs and workshops for caregivers. The programs, although helpful, were limited in scope and frequency. There was no consistent, long-term support for caregivers like her. These programs, while important, did not address the daily, exhausting realities that caregivers face, such as emotional burnout, social isolation, and the toll on their mental health.
Toward the end of our conversation, she said, “I don’t know who you are, and I may never meet you, but I feel like I can open up because I lack someone to trust. Sometimes, I feel so overwhelmed that I want someone to hear me.”
Her words capture the silent struggles caregivers endure daily. Despite giving so much to their loved ones, their needs are often overlooked. While initiatives like BRC provide essential care for individuals with disabilities, they fall short of addressing the caregivers’ burden. Caregivers need more than recognition; they require accessible mental health support, opportunities for social interaction, and sustained programs to tackle emotional burnout and social isolation. These issues are compounded by the stigma caregivers often face, which prevents them from opening up about their challenges.
Maya’s story underscores the importance of creating a supportive community within the BRC, where caregivers can share experiences without fear of judgment. Such a community could offer a safe space for open conversations, fostering trust and mutual understanding. Building this kind of network, alongside more comprehensive and consistent programs, is crucial for addressing caregivers’ long-term challenges. Their well-being is as critical as that of the individuals they care for. To build a truly inclusive society, we must ensure caregivers feel seen, heard, and supported for their own sake and the well-being of those they care for.