Mothers advocate for children with disabilities in Argentina

Mercedes Zessa of City Bell, Argentina, and Carolina Rabazani of Arroyo Cabral, along with other mothers, navigate complex systems to support their children with disabilities.

Mercedes’s son, Milo, has cerebral palsy following a stroke as an infant, and she manages his therapies, school access, and healthcare while also working. Carolina’s son, Bautista, has a rare genetic condition called X fragile syndrome, requiring her to fight for access to therapies and support through the healthcare system.

Both women describe the constant mental load of managing their children’s needs, advocating for their rights, and making endless decisions about care. They also face challenges like outdated professional fees, bureaucratic delays, and a lack of available therapists. Mercedes worries about Milo losing his therapeutic companion at school due to new requirements, while Carolina had to legally fight her son’s healthcare provider to receive necessary support.

These mothers highlight the invisible work of raising children with disabilities, the constant vigilance, the need to become experts in medicine and education, and the emotional toll of fighting for their children’s inclusion. They emphasize that while they are dedicated to their children, they are not alone, and finding support networks with other mothers is vital. They strive to ensure their children are seen for their abilities, not just their diagnoses, and to create a society that embraces their differences.