Bengaluru: Jithin Prakash K, a man living with spinal cord injury (SCI), was once travelling on a Vande Bharat train from Mangaluru to Thiruvananthapuram. Although he had booked a ticket under the disability quota, he found it difficult to shift from his wheelchair to the allotted seat whose handles came in the way. Unable to sit comfortably, Jithin wrote to the railways. His complaint eventually led to the removal of handles from seats reserved for persons with disabilities on Vande Bharat trains operating on the route.For Jithin, the incident showed how raising accessibility concerns can lead to changes on the ground. He urged others with disabilities to flag such barriers with authorities instead of accepting them as part of life.He was speaking at an event organised by the Association of People with Disability (APD)last week to mark 25 years of its Spinal Cord Injury Rehabilitation (SCIR) programme.“Raise the issues when you see them instead of posting it on Instagram. Help yourself and help your friends,” Jithin said.Unlike many other locomotor disabilities, SCI can occur unexpectedly, often following accidents, and can result in long-term dependence on wheelchairs. For people living with SCI, accessibility is closely linked to independence — from dressing and bathing to travelling, working and accessing govt services.“I want long-term sustenance. Our focus is on becoming independent — dressing up, bathing, getting in and out of bed. We require rehabilitation and spaces that provide us access,” Jithin said.He said accessibility barriers often affect decisions such as choosing a workplace or accessing govt services. “If we are joining a new company, we have to check if they have disabled-friendly toilets or if they have beds because we get fatigued if we sit for hours. Even while getting a Unique Disability ID (UDID), there are no specific criteria for us and, on top of that, I could not even go inside the govt office to obtain the card as it did not have proper ramps for access. We are asking for basic things. We are not asking for privilege,” he said.Ganga Mandel, a person living with SCI, from Chikkaballapur, said accessibility remains a challenge in public transport, banks and workplaces.“In railway stations, we struggle from entry to the station and platforms to locating the reserved compartment. Most govt buses do not have ramps, and if some do, the drivers and conductors aren’t cooperative. We join an office and the toilets will not have enough space for wheelchairs. If we want to deposit the money we earn, many bank branches are on higher floors with no lifts or ramps. These are the things we are asking for,” she said.Experts said such individual experiences also need to be documented and backed by data to translate into sustained policy changes.Kaye Lushington, research lead, Pacta, said there is a fundamental gap in disability-related data in India and that persons with disabilities should play a greater role in policymaking.“The data feeds into the way govt budgets are allocated. But it should not be looked at as a one-sided administrative affair. While the govt frames policies, it is on us to inform them, and persons with disabilities should be there in the room when they are framed. It has to be a sustained change. We should look at bringing lived experiences with data to back it up so that we can get govts to listen,” she said.
