Why Mental Health Support Is An Urgency For Disability Caregivers

In narratives about children with disabilities, a critical stakeholder often overlooked is the primary caregiver, usually the mother. From enduring difficult deliveries to raising children with disabilities amidst limited financial resources, the mental health and support systems of mothers are frequently disregarded.

However, it's not just mothers who face these challenges—other caregivers, including special educators and NGO staff working with children with disabilities, also navigate complex responsibilities and emotional journeys in this enabling space. 

The many layers of being a mother

Mothers often find themselves juggling multiple roles as primary caregivers, case managers, therapists, and teachers. A study by BMC Women’s Health revealed that mothers caring for a child with a disability have higher odds of experiencing musculoskeletal disorders, depression, anxiety, sleeping disorders, or migraines compared to mothers of children without disabilities.

While some mothers find immense support within their families or from their partners, others navigate the complexities of single motherhood. Regardless of their circumstances, when these mothers speak about their children, they radiate joy. They share how their kids are playful stress relievers, with dreams of becoming lawyers or firefighters, and express deep affection for siblings and animals.

Children with disabilities heavily depend on their families for care and support throughout their lives, requiring assistance with daily activities, emotional well-being, and financial care. These children are also prone to experiencing long-term chronic conditions and health issues, demanding significant time and resources from their caregivers. Sometimes, it's not just about disability but also about facing multiple layers of intersectionality and social ostracism.

Insights from focus group discussions with fathers of children with disabilities in rural Puducherry highlight the lack of platforms for them to share emotions and challenges related to mental health.

Enabling mental health for all in the space of disability action

Organizations in child-focused professions must acknowledge and address the emotional journeys of their staff members who work with children in challenging circumstances. Balancing work and personal life when caring for children with disabilities presents unique challenges, requiring supportive systems and robust mental health care practices.

One of the major challenges faced in the non-profit sector is adequately compensating staff for their efforts. Low salaries and the burden of mental stress in the workplace impact their productivity. Through the flexible funds from the Rebuild India Fund, we have been able to fairly compensate our employees, which has had a positive impact on their mental health.

Our mission is to empower individuals with special needs by leading the way towards inclusion in education, employment, and society at large through specialized intervention, rehabilitation, capacity building, and public policy advocacy.

"From Satya Special School, I learned about my child's triggers. Initially, I used to react by scolding or hitting my child for his reactions, but after attending observation classes at Satya, I gained a better understanding of all forms of disability and what helps to calm him down." - Imran’s (name changed) mother.

It is essential to acknowledge and engage with dedicated teams supporting children with disabilities, with a particular focus on mental health support. By challenging gender roles and stereotypes in disability care, organizations can adopt inclusive and equitable approaches that prioritize understanding and addressing the mental health challenges faced by all stakeholders. A feminist approach rooted in compassion and equity can transform care practices, transcending limitations and promoting inclusivity and well-being for caregivers and children with disabilities alike.

Authored by Chitra Shah, Founder/Director, Satya Special School