Breaking Myths: Care and Support for People with Spina Bifida

On October 5, 2025 (Sunday) at 8:00 PM IST, Enable Education hosted a webinar titled “Breaking Myths: Care and Support for People with Spina Bifida.” Held virtually on Google Meet, the session featured Ms. Khushi Ganatra, Para Athlete, Disability Inclusion and Accessibility Activist, and Founder of Walk n Wheels Foundation, as the keynote speaker. The session was introduced by Ms. Aarushi, Founder of Enable Education. Ms. Ganatra began by sharing her personal journey of living with Spina Bifida and the challenges that patients face on a daily basis. She explained that Spina Bifida has different forms, each with its own complications, and highlighted urinary control as one of the biggest lifelong challenges. In India, she noted, patients often become dependent on doctors, and finding the right medical professional is not easy. A good doctor can change one’s life, while lack of proper guidance can worsen it. She emphasized that self care is critical from childhood, but in most cases parents support the child until 18 years of age and then expect independence, which is not always possible without resources and awareness. Reflecting on her sporting journey, she described how she started with baseball, transitioned to long-term training, and ultimately pursued powerlifting. Despite limited infrastructure, no dedicated coaches, and very few facilities, she practiced in local gyms and went on to compete at the national level. She highlighted how para-sports are often treated with sympathy rather than equality, even though India’s Paralympic athletes won over 20 medals last year despite having less than 20% of the facilities available to mainstream athletes. She argued that when para-athletes are given equal opportunities, they will achieve even greater success. She also spoke about the broader issues of awareness and inclusion. While conditions like cerebral palsy and autism are now recognized, Spina Bifida remains little known. Until there are stronger laws, medical research, and social awareness, the rights of people with Spina Bifida will not be fully realized. Women with disabilities, she added, face double challenges—managing both gender bias and disability-related barriers—but many are turning their struggles into examples of strength and resilience. Through her foundation, Walk n Wheels, Ms. Ganatra has worked to spread awareness by organizing sports events, health collaborations, and inclusive fashion shows. These events, she explained, help show society that “everything is for everyone” and promote equality at every level. She shared how receiving a customized wheelchair in 2017 completely changed her life after years of crawling. Yet, she pointed out that most infrastructure in India—such as ramps, washrooms, and lifts—remains poorly designed and practically unusable for people with disabilities. She urged the removal of GST on assistive devices, regular maintenance and check-ups for wheelchairs, and more support for Indian companies to manufacture affordable, customized solutions. Employment, she stressed, is a key factor, because without income, people with disabilities cannot afford essential devices. In her concluding message, Ms. Ganatra called for collective action: “Come together and raise your voice. Alone, I cannot do it. Only when we unite will change happen.” She highlighted that greater representation, inclusive panels, and stronger efforts from NGOs are needed to ensure equal rights and opportunities for people with rare disabilities like Spina Bifida. Closing the session, Ms. Aarushi expressed gratitude to the speaker and participants, reiterating Enable Education’s commitment to creating inclusive spaces and amplifying the voices of people with disabilities.