August 25 is Janmashtami, a Hindu holiday celebrating the birth of Lord Krishna. As part of the celebration, men will form large human pyramids to break a pot of curd (yogurt) strung up from a great height. Last week, several men practiced near the roadway in a small slum in Mumbai’s Bandra East neighborhood, forming a pyramid with more than five levels. As the smallest man climbed to the top, several feet in the air, he caught his balance as one foot appeared to slip on the sweaty back of the man below. Ketna Mehta, director of the Nina Foundation, an NGO supporting individuals with spinal cord injuries, says these men, most of whom live in poverty, are paid small sums of money by wealthier devotees to create this pyramid honoring Lord Shiva. Every year, falls and serious injuries are commonplace during this ritual. If any of these men sustain serious spine injuries, their limited financial and social resources are further mitigated. Obtaining education, medical care, and jobs that will accommodate individuals with disabilities is difficult even for those with significant economic and social support.
Janmashtami represents just one of the ways that poverty and disability in India are intricately connected, a phenomenon I am exploring through the Pulitzer Center Global Health Storytelling Fellowship. Each year, the Pulitzer Center on Crisis Reporting supports students in their college consortium to report on untold stories around the globe. As the fellow from SPH (two students from COM also participated this year), I am reporting on the challenges of accessibility in India, as well as the cultural perceptions and stigma surrounding disability, both of which make this a largely invisible struggle.
While Indians with disabilities are often confined to their home, due to inaccessible transportation and infrastructure or for fear of social stigma, rates of disability are also vastly underreported. The last census in 2011 reported that just 2.21 percent of the population has a form of disability, compared to the global average for that year estimated at 15 percent. Without adequate data, the Indian government cannot effectively allocate resources for accessibility of public infrastructure, funding for inclusive education, or medical support. While the government has expanded the categories of disability to report in the upcoming 2021 census, many families will not report if someone in their household has a disability, and some census takers simply fail to understand and properly report cases of disability. In referring to her friend and fellow wheelchair user, resident Sunita Sancheti states, “Anup wouldn’t be considered disabled, because he is educated and working.” If he is sitting on his couch instead of his wheelchair, says Anup, the census taker is not likely to report his physical handicap unless he is persistent.
Stories like these illustrate the vast disparities between the legislation in place to protect persons with disabilities, and the actual implementation of the laws. Over the past three weeks, I conducted interviews, visited schools, and observed programming for persons with physical, intellectual, and sensory disabilities, attempting to understand the challenges of daily life for individuals with disabilities, and the opportunities for strengthening equity in accessibility and cultural perceptions. The buzzword among everyone, from disabled activists to NGO workers to government officials, is “awareness.” An overall need for consciousness-raising, from educators and policy makers to architects and physicians, is something all activists and people with disabilities agree upon. This lack of awareness perpetuates a “vicious cycle,” according to Sancheti. For example, when Mumbai finally added 25 low-floor buses to the existing transportation system, after years of advocacy in the disability sector, the city did not heavily promote the new vehicles, nor did they advertise the limited schedule for this new disabled friendly option. Also, footpaths to bus stations are nearly impossible for wheelchair users to navigate, with cracked pavement and high curbs with no ramps. After several months of low ridership among wheelchair users, the city simply discontinued operation of the buses. Neenu Kewalani, an activist and the first Miss Wheelchair India, says these buses are now used for mobile utility bill collection.
My experiences exploring the challenges of living with disability in India have not, however, been filled only of stories of injustice and inequities. In Delhi, I met with the leaders of the National Association of the Deaf, with the assistance of an Indian Sign Language interpreter, and learned of the powerful advocacy work conducted for the deaf community, by the deaf community. In Mumbai, I met Madhu Singh, a wheelchair user since childhood, who offers peer counseling on independent living, a rare phenomenon for Indians living with disabilities.
Over the next month, I will translate these experiences and encounters through written and visual media, to be published by the Pulitzer Center and hopefully other news outlets. My aim is to give power and voice to the disability community in India by sharing their stories through a public health lens. The barriers to opportunity that persons with disabilities in India face are steep—even more so in the rural areas compared to the urban cities I’ve explored. While data and statistics are necessary for effective advocacy and action, I believe there is equal power in sharing the stories of people living with disabilities so as to shed light on their largely invisible experience.