The Experience of Disability in Mumbai

October 11, 2016 | Pulitzer Center

Kate Petcosky-Kulkarni

Shivaji Nagar, a neighborhood of slums near the Govandi dumping ground in Mumbai, has the worst health outcomes of any community in Mumbai. The high rates of disability in this slum are both a consequence and a cause of abject poverty. Malnutrition, illness, and traumatic accidents (often in low-paying, dangerous occupations) can result in disability, while limited accessibility in education and employment restricts socioeconomic growth. Image by Kate Petcosky-Kulkarni. India, 2016.

Shamin Ansari, 14, lives with his brother, parents, and grandparents in a one-room flat in Shivaji Nagar. Born with intellectual disabilities, Shamin’s family worked with a Apnalaya, a local NGO, to obtain the government-issued disability certificate required for his admission into a special school. Apnalaya recently began a study to examine the relationship between consanguineous marriages, a common practice in Shivaji Nagar, and disability. Image by Kate Petcosky-Kulkarni. India, 2016.

The narrow, crowded streets of Shivaji Nagar are not accessible for persons with physical or sensory handicaps to navigate, often confining disabled individuals to their homes. Social stigma and negative perceptions, particularly of disabled women, further isolate individuals with disabilities. Image by Kate Petcosky-Kulkarni. India, 2016.

Despite legislation to increase accessibility in public spaces, at the Gateway of India, the only ramp nearby is blocked with police barricades. Wheelchair users must be lifted over the curb to visit this landmark. Image by Kate Petcosky-Kulkarni. India, 2016.

The Nina Foundation, an NGO in Mumbai for persons with spinal cord injuries, runs a free clinic each week for individuals in need of medical advice, physiotherapy, and peer counseling. Finding an accessible location, however, is a challenge, and volunteers must use this temporary, and somewhat unstable, ramp to go inside. Image by Kate Petcosky-Kulkarni. India, 2016.

Consultation for patient with spinal cord injury

Lalita Bhosale, seated, speaks with a homeopathic doctor at the free weekly clinic run by the Nina Foundation. After a spinal cord injury due to a fall last year, she uses a hospital wheelchair, which is not designed for constant use and often results in bed sores and shoulder pain. Properly fitted wheelchairs, catheters, and other equipment required for persons with a spinal cord injuries are hard to obtain for low-income individuals due to lack of public insurance, resulting in poor health outcomes. Image by Kate Petcosky-Kulkarni. India, 2016.

Balraj and Ayesha show off their uniforms at St. Stephen’s School for the Deaf in the Dadar neighborhood of Mumbai. Like most schools in India, St. Stephen’s follows the oral philosophy, using lip reading and speaking, rather than sign language. For students with moderate hearing impairment, this teaching method can be useful. For most deaf children, however, oral-only education limits comprehension, reflected in the very low literacy rates among the deaf community in India. Image by Kate Petcosky-Kulkarni. India, 2016.

A sign at a school for the deaf in Mumbai discourages the use of sign language. While students speak in class to teachers, many use their own signs with each other. The government has begun taking steps to standardize Indian Sign Language, which differs region to region as deaf children learn the signs which emerge in their communities, but are not taught in most schools. Image by Kate Petcosky-Kulkarni. India, 2016.

In India, cochlear implants are becoming widely used although this remains a controversial technology in the United States, the National Institute for the Hearing Handicapped in India helps pay for the implants in deaf children. Limited funds, however, are provided for the necessary auditory-verbal training for the device to effectively support language acquisition and auditory comprehension. Image by Kate Petcosky-Kulkarni. India, 2016.

At Mount March Church in the Bandra West, a Mumbai suburb, worshippers purchase candles to offer in the shape of the body parts which ail them. In India, perceptions of disability are often closely intertwined with religion. Particularly in more conservative and rural communities, people believe chronic conditions and disabilities are a punishment by God or can be cured through religious offerings. Image by Kate Petcosky-Kulkarni. India, 2016.

“Don’t sign. Don’t sign. Don’t sign.” This was the mantra of Nikita Gupta’s grandmother, discouraging her granddaughter’s use of Indian Sign Language to communicate with her parents, who are both deaf.

“Can’t you just stand for one minute?” is a question posed to Anup Chandran, a wheelchair user, anytime he goes through security at an airport.

Both of these short statements illustrate the deeply rooted stigma against disabilities and general lack of awareness that Indians with disabilities encounter on a daily basis. Beyond the social barriers, physical obstacles reduce mobility and opportunity, as the built environment and public transportation systems both pose significant accessibility challenges to people with motor or sensory impairment.