Dehradun: Tucked in the narrow bylanes of Prem Nagar near Dehradun, nine-year-old paraplegic Sandarbh Gupta’s house is equipped with a host of disabled-friendly facilities. A mosaic glass-tiled ramp leads to an arched entrance doorway, where a simple leather-bound wheelchair stands next to a steel chair with a hole in the middle to use as a toilet.
Sandarbh was diagnosed with multiple congenital disorders, including Myelomeningocele (MMC), which has left him completely paralysed from the waist down. As a result, he cannot move, bathe, dress or stand without assistance, and he has no control over his bowel movements. Sandarbh’s father, a railways technician, is posted in Lucknow in Uttar Pradesh, making his mother, Sanjana, his main caregiver.
“My mother accompanies me to school since I can’t walk. She faces a lot of difficulty in picking me up,” Sandarbh told ThePrint last week. Adding, “I often don’t even realise when I have to go to the toilet. I have lost all sensation in my legs. For instance, even if you pour water on me or tickle me, I will not be able to feel it. Due to my inability to walk, I was operated on thrice—on the head, the stomach, and the back.”
In September, Sandarbh filed a plea before the Uttarakhand High Court to request that his father be posted or transferred closer to his hometown, Dehradun, so that he could receive proper care. Besides the fact that their house has been designed in a PwD-friendly manner, the boy’s father Sanjay says that given their unique situation, both parents need to be by his side so that his need for constant caregiving is met satisfactorily.
“Even our toilet in Dehradun is designed in such a way that his special chair fits on the seat. He can comfortably use his wheelchair on the slanted floors as well. Will the railways quarter provide us with all this?” the boy’s father said.
The Class 3 student said his grandfather had been his primary caregiver until he passed away from cancer in March. His grandfather’s passing not only left an emotional void in the family but also deprived him of proper care. As a result, the responsibility fell on his mother, Sanjana, who is struggling with chronic back and arm pain. As her son grows in weight and size, it is becoming increasingly difficult for her to lift, support or assist him.
“Since my father is posted far away, the burden of taking care of me disproportionately impacts my mother who is already frail and struggles with back pain, especially while picking me up. Earlier, things were still easier as I was smaller in size and weight, but of late it’s gotten increasingly difficult. My father has, for this reason, requested Uttarakhand HC that he be allowed to come closer to me and help me manage,” said Sandarbh.
“Apart from this, I am unable to climb onto the bed myself, or pretty much do anything by myself. I have to wake my mom up even when she’s asleep so that she takes me to the washroom,” he added.
The petition is currently being heard by a single-judge bench of Justice Manoj Kumar Tiwari. In the last hearing, the bench had sought a response from the Indian Railways, though not before an intense scrutiny to ascertain the genuineness of the plea.
The court initially expressed considerable unwillingness to take up the issue, asking whether allowing children to be close to their parents would also extend to those in the armed forces posted in difficult locations.
Sandarbh goes to the school with significant assistance, but that hasn’t deterred his spirit.
He dreams of becoming a doctor and enjoys playing board games like Ludo with his neighbours and friends. Sandarbh also told ThePrint that he loves mathematics among all other subjects, and is deeply devoted to his love for cricket. “Virat Kohli is my favourite player in the world.”
His father Sanjay told ThePrint that even at his age, Sandarbh can recite the multiplication tables up to 30, without any assistance. “He enjoys going around in his toy car, which I got for him. He loves being around other children, like our neighbour’s kids who not only serve as a strong support system for us, but also make sure that they treat him equally, without any prejudice.”
“His brain is so sharp that he can remember things after watching lessons on YouTube once. The reason why he wants to become a doctor is so that he is able to ensure that no other child goes through what he had to endure,” the father added.
Earlier attempts & apathy
Since Gupta joined the service in 2020, he has made every effort to move closer to his son and improve the quality of his life. A year after he joined the railways, he sought a transfer in March 2021 to Moradabad, which is relatively closer to Dehradun than Lucknow, on compassionate grounds. Several months later, his request was rejected.
Following this, he also requested a change in his post, saying he was willing to take a lower-ranked position. However, this request remained pending for months, after which Gupta, along with his wife, filed several representations between 2021 and 2022.
Apart from this, the Guptas also wrote to the Prime Minister’s Office and the Chief Justice of India, besides authorities like the Chief Commissioner for Persons with Disabilities, but did not get a response.
In 2024, Gupta submitted a request to the authorities for purchasing a wheelchair from the Railway Staff Benefit Fund. However, his request was denied, citing unwarranted delays.
A year later, the family was informed that they would need to purchase the required equipment themselves, and only 20 percent of the cost or Rs 20,000 would be reimbursed, whichever is lesser.
“After we received no help from the PMO, I took my complaint before the Chief Commissioner for Persons with Disabilities. Following a hearing that lasted a year, and the notice being issued, they issued a recommendation to the Railway Board and the General Manager, that they must consider my case but the administration showed no regard for this order and neither did they comply with it. After these CCPD orders were also not complied with, I had no option but to approach CAT, Lucknow, which without even considering the merits of my case, sent it back to the railways authorities, with a caveat that they must consider it within three months,” Sanjay told ThePrint.
But, even after these three months, the railways did not decide the outcome of his case.
Instead, they passed an order asking him to file another representation online, he said while adding that prior to this, he had already made six representations before the railways administration, to the Railway Board, railways administration and general manager headquarters, among others. After years of bureaucratic indifference, and exhausting all available legal remedies in front of him, Sandarbh is now pinning his hopes on the courts.
Despite the challenges, he refuses to give up.
(Edited by Sugita Katyal)
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