New Delhi: It’s been close to five years but 20-year-old Anushka Panda feels her mention on Prime Minister Narendra Modi’s monthly radio programme, Mann Ki Baat, tops all her achievements – even securing the first rank in 2018 CBSE Class 10 exams in the person with disability (PWD) category, which brought her a mention on the show.
The young woman went on to grab the second spot in the same category in JEE 2020, securing herself a seat at IIT-Kanpur, but that pales in comparison to hearing the PM speak about her.
Anushka’s Class 10 board results came out 24 May 2018, and she had scored 97.8 per cent marks, topping the category. Calling her the ‘Divyang beti of Gurgaon’, PM Modi said in the 29 July episode that year, “I came across the news of Gurgaon’s specially-abled daughter Anushka Panda, who is suffering from a physical condition called spinal muscular atrophy. Anushka did not let her disability deter her from becoming an all-India topper.”
With the 100th episode of Mann Ki Baat to be aired 30 April, Anushka, a BTech (Computer Science) student at IIT-Kanpur, shared with ThePrint how her mention on the show brought her recognition and the challenges she still faces.
The only child of Anup Kumar Panda and Archana Vashist Panda, Anushka was diagnosed with spinal muscular atrophy when she was barely 14 months old. Spinal muscular atrophy is a genetic disorder characterised by weakness and wasting (atrophy) in muscles used for movement (skeletal muscles). It is caused by a loss of specialised nerve cells, called motor neurons, that control muscle movement.
While Anup works with Siegwerk India, a German MNC in ink manufacturing, and is based out of Gurgaon, Archana, who stays with Anuska in Kanpur, works as an auditor with Social Accountability Accreditation Services, a New York-based company. She is also a co-founder of Cure SMA Foundation of India, a parent-led foundation for spinal muscular atrophy based in Gurgaon.
Soon after the programme was aired, Anushka’s school was quick to put up her photo at its reception. Union minister Smriti Irani also called her up and invited them to her office. She received a great deal of adulation from neighbors, and friends as well. While it has been heartening, Anushka feels more needs to be done for people with her condition. “I want the government to take this forward and solve our problems too,” she says.
“There are two types of challenges – the one for which we have a solution and the other, for which we don’t,” Anushka says. It is for the second type of challenges that she requires Modiji’s help, she says.
Which is why, the duo has been trying, unsuccessfully, to meet the PM once. They haven’t yet given up hope though numerous phone calls and letters from MPs haven’t landed them that elusive meeting.
“So what if your kid has topped an exam?” Archana was asked by the staff of the Prime Minister’s office once.
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Raising right issues
“Mann Ki Baat has unquestionably provided me with a sense of self, but my efforts have also been crucial. After five years, we still mention Mann Ki Baat whenever we have appointments with government officials,” says the young woman who loves to paint and sing in her free time.
Life hasn’t been easy, but there are some issues that can be worked on. For one, it is the treatment of the condition. The mother-daughter duo want to discuss with the PM the price of the medication for spinal muscular atrophy. The treatment has been available in India for a while, but costs Rs 72 lakh per year – a price not many can afford to pay.
“Our budget just does not allow for such a large expenditure,” says Archana. Her daughter is somehow getting by, but the family has to be very cautious as she is prone to infections.
Also, Anushka adds, many national landmarks, including temples, museums, and even some schools, are not accessible to wheelchair users. “I was told that the carpet would be ruined if I entered the Bangla Sahib Gurudwara in Delhi,” she recalls.
In 2019, the duo was turned away from Kolkata’s Victoria Memorial because of her wheelchair. Till Archana presented her daughter’s photos and stories about her mention on Mann Ki Baat and said, “This is the girl even the PM has given respect to.” The staff’s attitude changed right away, she says. “They welcomed us inside. I can attest that wheelchair access is available (there). It’s the little things that add up,” she adds.
Likewise, Anushka’s photos and excerpts from Mann Ki Baat come in handy when Archana has to convince schools to admit children with similar conditions. “While doing so, I explain that the child will be an asset, not a liability, to your school,” she says. She has managed to get two children with the same condition enrolled in a school.
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Personal challenges
The best thing about the PM’s talk was that he never called her condition a ‘disease’. “It is so complicated that people leave it at ‘disease’, but PM Modi took its full name and spoke about it,” says Anushka.
In future, she hopes to be able to use her computer science knowledge in domains close to her heart – healthcare and music.
Travelling is also a challenge for Anushka who visits her father in Gurgaon during her semester break every four months. Vande Bharat has helped cut down on travel time, and the train is accessible by wheelchair, the ramp is too narrow for it. “I get four porters to help Anushka on the train, even though she is scared she might fall,” says Archana.
She says she escalated the issue to Sudhanshu Mani, consultant, Vande Bharat who connected her with the advisory committee which assured her they would look at her request for an inbuilt ramp in the train in future designs.
According to Archana, the condition has made her daughter too weak to walk and she requires full-time care and attention. “A few months ago, I got an ambulance to drive her from Kanpur to Delhi because she cannot handle even a mild infection and the city has no specialist for her condition.”
“I know PM Modi works day and night, and is doing so much for the country. He has given us so much respect. It would be great if he could spare some time for us too,” she says.
(Edited by Smriti Sinha)
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