Guiding from Lived Experience

One of the challenges that comes with disability is coping with the social stigma around it. When a person is born without vision, a certain picture of reality sets in the minds of the people around him or her. Moreover, the person also accepts the state as it is, unaware of another mode of existence. But for someone who acquires disability at a later stage, struggles doubly to accept the new reality and admit it to the surrounding community. They often remain obsessed with ‘what was’.

Eyeway receives calls from persons with late blindness, who are offered not just practical solutions but a lot of counseling to adapt and accept the loss of sight. Twenty-four-year-old Niranjan Patil experienced vision loss during his graduation. He was diagnosed with Retinitis Pigmentosa (RP) and Macular Dystrophy, both degenerating eye conditions.

Unable to come to terms with his altered sense of existence, he kept it hidden from his peers and teachers. It was only after consistently failing some subjects that one of his teachers inquired about the issue. Niranjan was then put in touch with a visually impaired person in Mumbai who could help him with tips on living life with blindness. Although it was useful, Niranjan felt that his problem was different from this person who was born blind. He insisted on seeking support from someone who went through a similar scenario.

He was then put in touch with Eyeway Helpdesk counselor in Mumbai who also experienced sight loss due to RP in her early twenties. She could relate to his frustration on every front and offered him a patient hearing. Niranjan’s focus was on reversing or correcting his eye condition which was nearly impossible. The counselor took a fair bit of time and repeated phone calls to convince him to shift focus on rehabilitating and upskilling instead.

Motivated by the regular interactions, Niranjan reappeared for his exams, taking help from his friends and using the smartphone. Learning about the various private sector and government job opportunities, he decided to enroll for an MBA course. But he needed a disability certificate to avail admission and reasonable accommodation as a visually impaired student.

Unfortunately, the process of acquiring a Unique Disability Identity card took a rather tedious turn. The local civil hospital in the Chikkodi district of Karnataka failed to correctly assess his disability, terming it lower than the 40% benchmark set by law. The counselor realized that the hospital was ill-equipped to make an accurate assessment and directed Niranjan to the Belgaum Civil hospital.

Although the doctors in Belgaum noted his disability at 60%, they couldn’t officially issue a certificate because his application was filed with the system in Chikkodi civil hospital. Both Niranjan and the Eyeway counselor tried to argue his case with the medical authorities but they were turned down with insults and apathetic behaviour. Forced to take the legal route, Eyeway approached the State Commissioner of Persons with Disabilities (SCPD) in Karnataka.

After a long-drawn official intervention from the SCPD office, Niranjan was issued a disability ID with 60% certification. But it was too late as the MBA course application deadline lapsed and now he has to wait another year for admission. The counselor told him not to be disappointed and use this one year to gain skills for independent living. He has now enrolled for a training program at Enable India, a Bangalore based NGO where he will acquire skills to use computers with screen reading software, work on his communication and mobility.

Lack of awareness leads to exclusion from mainstream opportunities and ignorance among medical professionals is even more damaging, as is evident from Niranjan’s case. He lost a few years adjusting to his late blindness and another one thanks to insensitive authorities.