Inclusion – The Good Story Project

The other side of the story

In October 2020, when the journey of The Good Story Project began, we published a series on people living with spinal cord injuries (SCI). Our aim was to highlight the many challenges and how those profiled in the series showed extraordinary strength and courage, embraced their disability, fought every step of the way and are not just doing well in personal and professional spheres, but are also winning medals for the country. While one may come across many success stories, very few stories delve deeper and focus on factors like the challenges of physical rehabilitation, social integration, and the high cost of living that come along with spinal cord injuries. September was spinal cord injury awareness month. We spent the month talking to people with SCIs to understand these three important aspects … aspects that no one talks about.

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Swati Subhedar

“I run my family”.

There was a sense of pride in the voice of Chandrapu Shoba Reddy, 48, when she said this one sentence in English. I was halfway into the telephonic conversation with her, which wasn’t an easy interview to conduct.

Reddy was at her home in Kamareddy, a district in Telangana. There were network issues and because of an unavoidable time constraint, I had to finish the entire interview in 15-20 minutes. Also, I was told Reddy wasn’t well-versed in English so her daughter-in-law Sandhya, a young girl, who could speak only functional English, would act as a translator.

Sandhya called me at 9 PM. I asked her the questions in English, she would translate them in Telgu and ask her mother-in-law, who would answer in Telgu, and Sandhya would then translate the answers back to me in English.

When I asked Sandhya how the family managed financially after Reddy met with an accident and suffered a severe injury to her spinal cord nearly three decades back, it was at this point Reddy said in English: “I run my family”.

It was in the late 1990s when Reddy, who was 22, fell from the first floor and sustained an injury to her spine. After the surgery, she was sent home. For the next 2-3 years, she was completely bedridden and dependent. The family was not informed that as a person with a spinal cord injury (SCI), she would have to go for physical rehabilitation to optimise recovery and to adapt to a new way of life. Unfortunately, nothing much has changed today.

Reddy’s husband, who was in a private job, had to resign to take care of his bedridden wife. After 2-3 years, when Reddy could move her hands a bit, she started making and selling pickles, a small-scale venture that gradually took off. It’s been 10 years that she has been selling pickles not just in India, but some of her jars have also been bought by families in the US. During the pickle season, Reddy earns Rs 25,000 a month and that’s how she runs her family.

Reddy’s journey may have come across as a smooth one. It wasn’t. None of those living with spinal cord injuries has it easy. The challenges are manifold. But the three most important ones are — the challenges of physical rehabilitation, social integration, and the high cost of living. While there is a complete lack of awareness when it comes to physical rehabilitation, no family is prepared to deal with the sudden as well as recurring costs that come along with SCIs. On top of the list is social integration, which is interlinked with financial independence.

**After 2-3 years of meeting with an accident, Chandrapu Shoba Reddy started making and selling pickles, a small-scale venture that gradually took off.**

Physical rehabilitation: The First step

After sustaining a spinal cord injury, one has to spend some time in rehab. It is the most important step, but due to the lack of awareness, most patients don’t end up in rehabs.

“After surgery, when a person is guided to a rehab, half the battle is won. However, in most cases, doctors, which includes top surgeons and hospitals in this country, don’t do the needful. They are aware, but they don’t advocate because they don’t want to waste their time in spreading awareness,” said Madhuri Paturi. She lives in Bengaluru and for the past two years has been associated with The Ganga Foundation as a peer trainer. The institute has been empowering persons with SCIs for years now. Paturi, a paraplegic herself, is also a jewellery designer and has her own clothing line.

Giving an example of how crucial physical rehabilitation is, Paturi said that after an SCI, people lose bowel and bladder control, but there are ways to deal with this and these are the things that are taught at rehabs.

Persons with SCI are also at the risk of developing secondary complications such as urinary tract infections (UTIs), pressure sores, and respiratory illness, apart from issues like spasticity, weight gain, and chronic pain. One needs professional guidance to deal with these problems.

“In India, we hardly have any rehabs. There are just 6-7 state-of-art rehabs. Roughly, we are adding 15,000 persons with SCIs to the existing list, which is very long. The handful of rehabs are catering to maybe 400 patients, and these are those who are aware that they are supposed to go to rehabs. The rest are not even aware,” said Paturi.

Komal Kamra’s story is proof of this. Kamra is the secretary of The Spinal Foundation, a pan-India umbrella organisation that addresses the daunting challenges faced by persons with SCI, especially those who are also economically challenged, and living in rural areas. In 1993, her family met with an accident in which Kamra and her mother sustained spinal cord injuries, incurable to date, leading to a life long disability.

“My mother was sent to a renowned hospital. After the surgery, they simply sent her home with no concept of rehabilitation. I was treated at an Army hospital, which gave me some ideas about rehab as that is the only way to live a near normal life after sustaining a spinal cord injury. The general public is unaware about spinal cord injury and its devastating effects unless addressed with appropriate rehab. Most health professionals too know little except for those few who are specialised in the field. This was the situation in the 1990s. Same is the situation now,” said Kamra.

She added: “There is a huge gap between the number of beds available for rehab and the number of people who sustain spinal cord injuries. Less than 10% of people actually land at rehab. Even if people are aware, and they have the money, where are the beds? Also, you can count the number of physiatrists on your fingers.”

In 2021, The Good Story Project made this video to spread awareness about spinal cord injuries.

Social integration and financial independence

After physical rehabilitation, the second important step is social integration. In many cases, families are reluctant to welcome persons with SCIs at home because at least in the initial period they are dependent on their families even for the daily chores. In many families, they are considered to be liabilities if they are not earning or are not contributing to the family income. One may come across many cases in urban areas. The situation in rural pockets is even worse. The journey becomes all the more difficult for girls in small cities and villages.

“I have been seeing a pattern in the case of girls. If a married woman sustains a spinal cord injury, in most cases, the family refuses to take care of her. If a girl is unmarried, and if she is from a good family, the family says they will take care of her. However, very few even try to find her a partner. It’s taken for granted that no one will marry her. If a girl starts working from home, then she is often told that whatever you are earning is not enough, so there is no point in stepping out for work. This is why I encourage more and more girls to be financially independent. Even if they manage to earn a modest income, that money will boost their confidence. One must remember that social integration happens only when a person is financially independent or contributes to the family’s income,” said Paturi.

A telephonic conversation with Kanchana from Madurai helped in understanding how crucial the support of family is in helping a person become financially independent. When I interviewed Kanchana, Balageetha Ganesh from Chennai volunteered to be the translator.

Kanchana, a mother of a nine-year-old girl, met with a car accident in 2017 that sheared her spinal cord. Her in-laws and husband immediately took her to CMC Vellore for rehabilitation. She stayed there for 25 days.

“My family was very supportive, and they have always encouraged me. In 2017, I started making paper envelopes. My husband looks after the marketing and sells those envelopes. Since 2017, I have managed to make a marginal profit almost every month. When I get orders, I also make amla powder, pickles, and jams,” said Kanchana.

She has pursued a course in Bachelor of Education and was working at a school before she met with the accident, which may have left her in a wheelchair, but thanks to the support she got from her family, she continues to be financially independent. It really helped that she was sent for physical rehabilitation soon after the accident and the family played a key role in her social integration.

**Kanchana with her husband and daughter**

Paturi believes that all those who get spinal cord injuries are extremely skilled and they just need the motivation to stand on their feet.

“During one of my peer training, I came across a girl, a single mother, who unfortunately met with an accident and sustained an injury to the spinal cord. She has a young daughter. During one of the training sessions, she told me she likes to stitch, but her father sold off her sewing machine after her accident thinking it was of no use. I told the girl that she can continue stitching even after the injury and that I would arrange for an electric sewing machine for her. Within three days of me motivating her, she arranged for a manual sewing machine on her own, got a motor attached to it, stitched some stuff, and sent me the pictures of the samples,” said Paturi.

She added: “You don’t need to give persons with SCIs, especially girls, additional wings to fly. You just need to motivate them, and they will fly on their own. There is this girl whose father is a tailor. She is 35 now and has been living with SCI for 20 years now. We counselled her family and only recently she went to rehab. Now she is teaching others how to stitch.”

Implications of a spinal cord injury are lifelong and with age, the complications may multiply. “Hence, it is imperative that not only do we work continually towards physical independence but also to be financially independent. In India, social integration happens only if you have money. Some of us run households and pay taxes, but there is a need to motivate a vast number of others, especially girls,” said Kamra.

**Komal Kamra (left) is the secretary of** **The Spinal Foundation. Madhuri Paturi (right) has been associated with The** **Ganga Foundation** **as a peer trainer.**

SCI and the high cost of living

After sustaining a spinal cord injury, the expenses go up immediately. The first major expense is of physical rehabilitation. Later, one needs physiotherapy and a wheelchair. At some stage, a person will need an advanced wheelchair. One needs life-long medicines, and this is a recurring cost. One needs to spend money on surgeries and medical procedures in case of secondary complications. One may also need to hire one or more helpers or caretakers. In India, they come at a cost and are not trained to deal with persons with SCIs.

In India, insurance companies don’t cover spinal cord injuries and related costs.

“In Western countries, the governments and insurance companies take care of everything from surgeries, rehabilitation, medicines, wheelchairs, physio, physio equipment, accessible personal vehicle (at an exempted rate) to discharging the person from hospitals and paying for their caregiving. In a few countries, governments provide persons with disabilities a fixed amount of financial assistance every month and help in making their houses disabled-friendly. The best part is schools providing inclusive education,” said Ekta Bhyan, a para-athlete who has represented India at the para-Olympics and para-Asian Games.

She added: “In India, the government does not give any special incentive to persons with SCI. There are a few rehabs that provide some assistance to those below the poverty line. But it is far from what needs to be done. We need more support from the government and medical insurance companies. In our country, disabled persons are expected to pay taxes, but they can’t avail of medical insurance even when they are ready to pay the premiums.”

**In our country, disabled persons are expected to pay taxes, but they can’t avail of medical insurance even when they are ready to pay the premiums: Ekta Bhyan**

“Insurance companies refuse to cover us but there are ailments that have nothing to do with our broken spines. Another reason why insurance companies don’t cover us is the lack of data. We are presently working on that, and it is tough. More often than not, a spine injury remains undiagnosed and thought of as weakness or paralysis. Also, many migrant workers who sustain spinal cord injury are sent home after bone stabilisation, and often pass away because of related complications. It’s an unorganised sector. So, it becomes all the more difficult to get exact numbers,” said Kamra.

Paturi feels insurance must be provided at least for physical rehabilitation, which may result in more people going to rehabs.

There is a need to find long-term solutions, but the need of the hour is to look for immediate short-term solutions.

“To begin with, have a few beds for persons with SCI at the various multi-specialty hospitals, at least one in each state. Due to the lack of trained caretakers, we have no option but to take the help of our domestic helps. An alternative could be to train some people so that they are able to help persons with SCIs and they should be sent where the need is. Prevention is better than cure but if a person is affected, let getting affordable and qualitative rehab be his right,” said Kamra.

Paturi feels the government needs to push for specialised hospitals at the state and district level. “But before everything else, we need to change our mentalities,” she said.

In 2020, The Good Story Project had published a series to spread awareness about spinal cord injuries. Read Mrunmaiy’s story, Ishrat’s story, Rafat’s story, Garima’s story, Preethi’s story, Suresh’s story, Kartiki’s story, Ekta’s story

Reaching Mount Everest base camp … one step at a time

On May 3, the day the world was celebrating Eid, at 11 AM, the mighty Himalayan mountains reverberated with the sound of the Indian national anthem. A team of nine, that included a double amputee, a visually impaired judo player, a blade runner, and a member of the LGBTQ+ community, among others, reached the Mount Everest base camp, situated at the height of 5,364 meters. One of them was single-leg amputee and dancer and national wheelchair basketball player Chanchal Soni, 14, who hails from Nari, a small village in Chhattisgarh. She scaled the summit with the help of ordinary crutches and became the youngest single-leg amputee climber in the world. It was her first mission, and she says it certainly won’t be her last. However, all her future missions depend on something crucial … funding. Soni feels her story did not get the kind of attention it deserved, and more coverage might help her secure funds for her future missions. Being a platform that promotes equality and inclusion, we decided to tell her story.

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Swati Subhedar

The telephonic interview with Chanchal Soni, 14, who lives in a hostel for special children and children with disabilities, in Dhamtari district in Chhattisgarh, was set for 11:30 am. At 11:20, Soni gave me a call to inform me that she was all set. During the interview, I smiled every time she, very innocently, said she wants to be a “mountner” (mountaineer) and do “mounting” (mountaineering), but the passion with which it was said was unmissable. After the interview, she called me again to tell me: “No one has asked me these questions before. Please write a good story. It will help me get funding for my September summit to Mount Kilimanjaro.”

Just last month, on May 3, Soni, who is a single amputee (below knee), scaled the Mount Everest base camp along with nine others from Chhattisgarh and became the youngest single-leg amputee climber in the world to do so. The mission was spearheaded by Chhattisgarh-based double amputee Chitrasen Sahu. One of the objectives of his initiative “Mission Inclusion” is to bring behavioral change in society when it comes to persons with disabilities. Apart from Soni and Sahu, the nine team members included a visually impaired judo player, a blade runner, and a member of the LGBTQ+ community.

The team started the journey to the Mount Everest base camp, situated at the height of 5,364 meters, on April 24, and completed the mission on May 3 in record 10 days instead of 17.

**Chanchal Soni, 14, at the Mount Everest base camp.** **Presently, She is the youngest**
**single-leg amputee climber in the world**

“I had never seen snow before”

“The first thought that came to my mind after reaching the base camp was ‘I did it’. It was not easy. On the first day itself, the rubber base of one of my crutches came off because of which one crutch became shorter than the other and it made the climb all the more difficult. In addition, big boulders were kept for the convenience of other trekkers, but they proved to be a major roadblock for us,” said Soni.

It was for the first time that Soni was walking in ankle-deep snow and encountering nail-biting cold. “It had snowed just two days before we reached. I was not carrying proper warm clothes. We shopped in Kathmandu, and I bought woolens and a raincoat. It was not easy to walk wearing so many layers, but it was so cold that I could not even take them off,” she said.

She added: “As it was my first summit, for the first time I was experiencing the discomfort one feels when the oxygen level dips. They would monitor our oxygen thrice a day. It was all new for me. I had been practicing for one year before the mission. I would walk for 12 kms from Rudri (a small town in Dhamtari) to the Gangrel dam every day. I also went trekking to the hillocks nearby. But that walking was all on straight roads. This was something different.”

Considering the team was a mixed lot of able-bodied and differently abled climbers, they would keep each other motivated throughout the trek. “One day I almost fell into a deep valley. That day I got really scared and felt I would not be able to make it. But my teammates motivated me, and I kept going. When we reached the base camp, we clicked many pictures and sang the national anthem. It was a special moment,” said Soni.

**Soni is also passionate about dance and is popularly known as a one-leg dancer**

Embracing her disability

Born on January 15, 2008, in a village called Nari in Chhattisgarh, Soni was quick to accept and embrace her disability. “This is how I was born. But as I child I was very restless and while playing would easily climb trees and scale walls. Looking at my agility people would say I can easily climb mountains. I was fairly grown-up when my aunt told me about people who scale summits. That stayed in my mind and that became my dream. Since then, I was determined to do mounting (mountaineering),” said Soni.

Ironically, it was her other passion, dance, which opened the world of opportunities for her. She is popularly known as a one-leg dancer in the state. “Since childhood, I loved the rhythm of music. Initially, I would watch videos and dance at home. Then I received training. Soon, I started performing at cultural events. A few years back, I performed at the annual Kumbh mela in Rajim (a small town). The video went viral, and my picture was carried by local newspapers. In one of the interviews, I had mentioned that I wished to become a mountner (mountaineer). Luckily, Chitrasen (Sahu) bhaiyya (brother) saw that interview and got in touch with me.”

Soni is the youngest national wheelchair basketball player in the country in the senior category

Youngest national wheelchair basketball player in the country

Sahu, who is known as “half human robo”, is a blade runner, a national wheelchair basketball player and swimmer, a motivational speaker and an inclusion and disability rights activist based in Chhattisgarh. He got in touch with Soni and trained her to play wheelchair basketball. When she went to represent Chhattisgarh at the nationals held in Mohali (Punjab), she became the youngest national wheelchair basketball player in the country in the senior category. It was in 2019. The global pandemic, which forced all of us to stay indoors, was a major dampener for Soni as well.

“It was during the pandemic period that we started planning for summits and working on the logistics. What I have learnt is getting funds for these summits is the toughest. People make promises, but when it comes to parting with funds, they hesitate or simply disappear. I had to cancel two missions because of a lack of funds. Finally, the Mount Everest one somehow worked out. Now again we are trying to get funds for the upcoming September summit to Kilimanjaro. Again, despite the recent achievement, I am facing similar problems,” said Soni.

**Soni with her mother, her biggest cheerleader**

“In the absence of funds, how will these children fulfill their dreams?”

Soni’s biggest cheerleader is her mother, Manju Soni, a single parent. Her husband, Sanjay, who owned a jewelry shop, passed away in 2016 after a prolonged illness. Since then, she has been living in a locality named Naya Para in the state capital Raipur and sent Chanchal to the hostel for special children in Dhamtari. Her siblings – an elder brother and a younger sister – live with her relatives. Manju makes a living by cooking meals for families.

“I am grateful to Chanchal’s mentors at the hostel. It’s a charity organization so I don’t have to pay any fees. They have been really motivating and whatever my daughter has managed to achieve so far is thanks to them. Given our financial condition, I would not have been able to support my daughter in all these endeavors,” said Soni.

She was extremely skeptical when her daughter told her that she was going to scale the Mount Everest base camp. “But I let her go because it was her dream. There were network issues, and I could not talk to my daughter while she was on her mission. However, I would drop a message every single day and wait for a response. Those days were tough. But when I came to know that the team had reached the base camp, I was very happy. I had never imagined that my daughter could achieve something like this. Now I am more confident to send her for her future missions.”

Lack of funding is an issue that bothers her as well. “Not everyone is financially stable. There are children who are born with disabilities. One can’t change that. But the least the government can do is to help such children in every way possible to keep them motivated,” she said.

During the telephonic interview when I had asked Chanchal to comment on what she thought about inclusion, there was long silence. She thought very hard and said: “Inclusion means children who are born without any disabilities should allow us to play with them. Full-grown adults should stop looking at us with pity and they should not taunt us. It’s because of this attitude prevalent in our society, parents don’t allow children like me to step out. They keep them protected at home or they start feeling ashamed of our existence. It’s because of this pressure that many children like me are not able to do anything. This should change and this is what inclusion means.”

Also read: The international wheelchair basketball player from Kashmir

Also read: The Tokyo Paralympian from Haryana

We do hope that you enjoy reading our stories. We are a very small team of two; with no funding or resources to back us, and your contributions will help us in keeping this platform free and accessible for everyone. If you wish to contribute, click here.

Seven continents, seven summits and Mission Inclusion

These days, Chhattisgarh-based Chitrasen Sahu, 28, is extremely busy. As I write this story, he is finishing travel formalities and trying to secure the last leg of funding for his upcoming expedition to Mount Acconcagua. At 6,962 meters, it is the highest mountain in the Americas. Previously, in 2019, he had scaled Mount Kilimanjaro, the highest peak in Africa, in 2020 Mount Kosciuszko, mainland Australia’s tallest mountain, and in 2021 Mount Elbrus, the highest peak in Russia. He is the first double amputee from India to achieve this and his aim is to scale seven summits present in seven continents. “Half human robo” Sahu, also a blade runner, a national-level wheelchair basketball player and swimmer, a motivational speaker and an inclusion and disability rights activist, is on “Mission Inclusion,” and this is his incredible story.

Swati Subhedar

On a humid summer day on June 4, 2014, Chitrasen Sahu, 21, a civil engineering graduate, boarded a train heading to Bilaspur district in Chhattisgarh from his hometown Balod. At Bhatapara railway station, Sahu got down to buy a bottle of water. Little did he know that his life was going to change forever, and an ill-fated moment was going to snatch away from him his dream of joining the armed forces.

While he was buying water, the train started moving. His hand slipped while trying to board the train, and his feet got stuck between the platform and the moving coach. He lost one leg, and due to medical negligence, a few weeks later, the doctors had to amputate his other leg as well.

Sahu, belonging to a farmer’s family in Balod district of Chhattisgarh, may have had to let go of his dream of joining the armed forces, however, the incident only strengthened the fighting spirit with which he was born. It’s been just seven years, however, in less than a decade, Sahu, now 28, has an impressive portfolio under his belt. Some of his achievements include being a national para-swimmer and a blade-runner, representing Chhattisgarh at the national level in para-basketball and carrying out skydiving and scuba diving with artificial limbs. Over the years, he has also groomed himself to be a motivational speaker and aims to help other persons with disabilities in every possible way.

However, his most distinguished achievement, which has earned him the nickname of ‘half human robo,’ is that he is the first double amputee from India to scale Mount Kilimanjaro (the highest peak in Africa), Mount Kosciuszko (mainland Australia’s tallest mountain) and Mount Elbrus (the highest peak in Russia). His mission is to scale the seven highest summits present in seven continents, just to prove that there is nothing that persons with disabilities can’t achieve. After ticking three peaks off his bucket list, he now desires to scale Mount Denali (North America), Mount Everest (Asia), Mount Vinson (Antarctica) and is presently looking to secure funds so that he could scale Mount Aconcagua (South America) in January 2022. Sahu believes by scaling these summits he should be able to achieve his goal of ‘Mission Inclusion’ — an initiative started by him whose objective is to bring behavioral change in society when it comes to persons with disabilities.

Why the need for Mission Inclusion?

“While standing in a row, we may come across as the odd ones out, however, one must acknowledge that we are still standing in the same row as the others,” said Sahu, who is presently working as an assistant engineer with the Chhattisgarh Housing Board in Raipur. As it happens with most people with disabilities, Sahu had to deal with a lot of negativity that random people threw at him soon after the accident. It was not easy to snap out of it, but Sahu managed thanks to his supportive parents and close friends and later took upon himself the responsibility to motivate other persons with disabilities so that the journey becomes slightly easier for them.

“The aim of my initiative Mission Inclusion is to bring behavioral change in society towards persons with disabilities. In our country, people stare at persons with disabilities. Then, they immediately want to know your story. Mission Inclusion aims to make people aware. For instance, the basic thing is you should always ask before helping a person with any kind of disability, rather than just jumping to help him/her. My vision is to uplift their morale and boost their confidence so that they start believing that it isn’t too difficult to live with a disability once they accept it, embrace it, and find ways to use their limitations to their advantage,” said Sahu, a TEDx and motivational speaker.

He added: “Often, persons with disabilities also have to deal with stress, depression and anxiety. We have volunteers who make sure that they get proper counseling. So far, we have managed to help nearly 2,000 people with counseling … some of them were battling suicidal tendencies. With assistance from other stakeholders, I have helped nearly 100 people in getting artificial limbs and assistive devices. Plus, they also must be financially independent. We apprise them of various existing government schemes and policies that aim to assist persons with disabilities.”

When the need arises, a soft-spoken Sahu turns into a fierce inclusion and disability rights activist. “In 2017, I bought an automatic modified car, but was denied license and registration because of my condition. I fought a legal battle and after 20 months, finally won in the Chhattisgarh High Court. This win paved the way for the reopening of lakhs of such cases in the state. Now, no one denies persons with disabilities driving rights,” said Sahu.

**Chitrasen Sahu is a motivational speaker. The aim of his initiative ‘Mission Inclusion’ is to bring behavioral change in society when it comes to persons with disabilities**

Scaling seven summits to achieve Mission Inclusion

“In May 2018, Chhattisgarh-based Rahul Gupta, who goes by the moniker “mountain man” held a press conference after a successful climb of Mount Everest. I attended the press meet and was fascinated. I approached him and asked him if a double amputee can climb mountains. Soon, we started training! We worked really hard for the next 1.5 years,” said Sahu.

After extensive training, Sahu was confident of scaling Mount Kilimanjaro. At 5,685 meters, it is the highest peak in the African continent. Gupta accompanied Sahu for the first expedition.

“On September 19, 2019, we started climbing. After four days, on September 23, at 11 am, I was at the peak holding the Indian flag. I have no words to describe the feeling. The last day was especially tough. The temperature had dipped to minus 10 degrees and chilly winds were blowing. We were 12 hours away from our destination. As it’s a volcanic mountain, it tends to get slippery. We kept going and, in the process, I sustained injuries. But we did not stop. When we reached the peak, I went numb with happiness. Five years back I was in the hospital, figuring out the way ahead and five years later, I was at the peak of Mount Kilimanjaro,” said Sahu.

After achieving this feat, there was no looking back. Sahu then aimed to scale the highest peaks in all seven continents. Next year, in 2020, his next stop was Mount Kosciuszko, which, at 2,228 meters, is mainland Australia’s tallest mountain. In 2021, his climb to the peak of Mount Elbrus, the highest peak in Russia (5,642 meters), wasn’t an easy one. “I felt sick the moment we started climbing. The temperature was in the range of minus 15-25 degrees. I could see snow for miles, which was beautiful, but the winds were ruthless. It was so bad that I threw up a couple of times. There came a moment when I felt I won’t be able to complete the mission. That thought gave me the required push. I popped a pain killer and picked myself up, after which there was no looking back until I reached the peak.”

To know more about Chitrasen Sahu and his missions, watch this video

Next stop … Mount Acconcagua

These days, Sahu is busy finishing travel formalities for his upcoming expedition to Mount Acconcagua, which, at 6,962 meters, is the highest mountain in the Americas. I could feel the rush in his voice when we spoke over the phone. He had a long to-do list. However, he was a bit anxious about the task that topped the list – securing the final leg of funding for the expedition for which he will leave from Raipur on January 2, 2022.

“For such expeditions, we have to carry two pairs of prosthetic legs; one that we use and one spare one. We have managed to get funding for one pair. We are still looking for sponsors who could fund the second pair. These expeditions are costly. All inclusive, this expedition is going to cost me approximately Rs 17 lakh. I need special equipment and clothing, which cost Rs 75,000. One pair of prosthetic legs costs Rs 6 lakh. The climbing fee is around Rs 3.37 lakh, and the expedition guide is going to charge Rs 2.25 lakh. Yes, raising funds for these expeditions has been a challenge. Mountaineering is something new, hence there is hesitation. I hope initiatives like Mission Inclusion would instill confidence in people and things will change,” said Sahu.

Befriending the mountains

“What I love the most about these expeditions is that mountains can’t distinguish. Scaling a mountain is a challenge for all. The low oxygen level, the snow sickness, the extreme weather conditions … everyone gets impacted by these factors. I just have a carry an additional weight of my artificial legs. That’s the only difference. All one needs is passion, dedication, and the hunger to reach the top,” said Sahu.

And what do mountaineers do when they reach a peak? How do they celebrate?

“I did pushups after reaching the peak of Mount Elbrus! Usually, the first thing I do is to remove my artificial legs, and then I just look around at the mountains and marvel at their beauty. Then the photo sessions begin! Along the way, we meet so many people from different countries. We all become friends and share our stories. That’s what I love about each journey,” said Sahu.

These expeditions are often very risky. In September 2021, almost a month after Sahu reached the peak of Mount Elbrus came the disappointing news that five mountain climbers lost their lives after they were caught in a blizzard. How do Sahu and his family and friends deal with this anxiety? “I have a simple funda. You will never know what’s in store for you. Just keep following life’s journey.”

If you wish to help Sahu raise funds for his upcoming expeditions, you can connect with him at halfhumanrobo@gmail.com or visit his website.

Will you hire them?

Social inclusion and equality are two powerful words, but when it comes to employing persons with disabilities (PwDs), people with special needs, and members from the LGBTQ+ community, the numbers are not very impressive. In many parts of the world, June is dedicated to celebrating the LGBTQ+ community and their struggles against discrimination and social ostracization. June 18 is also celebrated as Autistic Pride Day. On this day, The Good Story Project takes you to a cafe in Raipur, the capital of Chhattisgarh. Here’s what is interesting. Presently, staff members at one of the branches include 15 people with hearing impairment, four transgenders, one person with Down Syndrome, one person who has a condition called dwarfism, and two trafficking survivors. Priyank Patel, founder, and managing partner of Nukkad Tea Café, talks to The Good Story Project co-founder Swati Subhedar about the challenges and the need to make these very talented people a part of the mainstream

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June is celebrated as Pride Month. Please share the journey of people from the LGBTQ+ community working at your café.

Since its inception on June 18 in 2013, Nukkad has been working to promote social inclusion and equality. We started working with the members from the LGBTQ+ community in 2015. It was a one of its kind social experiment to recruit transgender people at various positions at the café. We went through our share of anxiety and skepticism and were not sure if the society would be as inclusive as we were trying to be. We met many people who were working with transgenders in Raipur. Through counselling sessions, we had to convince them about Nukkad working as an alternative medium of social security and financial independence and that our endeavour was to help them live with dignity and get social acceptance. We recruited a few members from the transgender community, trained them and taught them the basics of working in the hospitality sector. The experience and outcome were amazing. We were pleasantly surprised to see the overwhelming response from society as well.

Presently, we have two members from the transgender community working at one of our branches — Sagar (Asmita) is 29, a BBA graduate, who hails from the Charama block in Chhattisgarh, and Yugal (Illiana) who has cleared her 10 standard and hails from Mahasamund district in the state.

June 18 is celebrated as Autism Pride Day. Do you have any people with special needs working at the café?

We do not have any employees with Autism, but we do have Sunil Vacchani working with us who has Down Syndrome. After working with the differently-abled community members for the past five years, we always wanted to explore the possibility of hiring a person with Down Syndrome. We met Sunil bhaiyya through a local NGO. As it was a first for us, we had to put in some effort. The team had to be sensitized and trained to understand the strengths of Sunil bhaiyya. We have given him a comfortable working shift of six hours and have assigned him as the ‘Happiness Ambassador’. He is a devoted team member, is charming, and always smiling. He is 46 and supports his mother financially.

How did Nukkad come into being? Why did you decide to hire people with special needs?

Nukkad is not just a tea café; we have been promoting social inclusion over a cup of chai since 2013. We are a social movement aiming to engage, employ and empower marginalized community members. I graduated in Electronics and Telecommunication in 2007 from Shankracharya College of Engineering in Chhattisgarh and got placed in an IT firm in Delhi. For the next four years, I worked with various other firms. In 2011, I was chosen for a fellowship and worked extensively with various organizations in Gujarat, Odisha, and Maharashtra for two years. I worked on rural livelihood, stayed within the community, and experienced how the village-based economy functions, the social structure of Indian villages, and the yawning gaps in our system.

I realized there is an immediate need for an interactive community space and came with the idea of a Chai Cafe that will employ and empower the marginalized segment of the society comprising the people with hearing impairment, people with learning disabilities, dwarfs, trafficking survivors and transgenders. We started in 2013, and today we have four outlets in two cities (Raipur and Bhilai). So far, we have employed and empowered over 40 talented people and we are India’s very first café employing 15 transgender community members over a period of time.

**Priyank Patel, founder of the Nukkad café**

What are the challenges of hiring persons with disabilities/those with special needs?

Reaching out is a challenge as with every new community, our area of exposure and training patterns change. We need to keep connecting with various NGOs, local bodies, individuals, and families to identify people. We have to constantly evolve. For instance, we have to learn sign language while dealing with the hearing impaired community members, we need to learn body language and change our tone of communication while dealing with people with Down Syndrome and trafficking survivors. The cross-community synchronization is a challenge as we have to ensure that the multiple communities working in the same organization respect each other and adapt to each other’s needs.

Training them is a challenge as many of our team members who are from marginalized communities generally have low or no school education. They also have low self-esteem and were never generally exposed to the world of hospitality. Our efforts lie in developing an inclusive working environment that helps each of our team members to acquire and aspire for more and offer equal growth opportunities for all.

**Sunil Vacchani (left) and Manish Khunte**

How do your customers react? Are they as inclusive?

Social inclusion is a broad term, and our consistent efforts are towards developing an inclusive work environment by sensitizing society as well. Nukkad has been widely acclaimed and appreciated for its initiatives and people have always shown efforts in learnings and supporting the inclusive vibes of the café. Very rarely do we receive any inconvenience complaints because of the specially-abled employees working at our café.

Those coming to the café and being courteous to the staff, may not end up hiring persons with disabilities or people with special needs as their staff members at home or in the office? What should be done to bridge this gap?

Sensitizing the sociality about social inclusion is as important as active participation and we try to do both. We have not just sensitized thousands of people about the challenges and potentials of hiring persons with disabilities, but we also have broken many prejudices and myths about the employability of PwDs. In a society where there are hundreds of unemployed youth, one is always competing to hire “normal” people. Secondly, it requires efforts and amending of processes to create an inclusive work environment. Unless there are incentives, I don’t think people would be very thrilled to hire PwDs.

I would recommend keeping the hiring process fair and open for all. One should hire a person who fits the job description. In order to make it a practice, the government must, among other things, incentivize employers who hire persons with disabilities/special needs and support young PwDs entrepreneurs so that they can create opportunities for persons with disabilities/special needs.

Do you think being employed and financially independent makes it easier for PwDs/those with special needs to find a place in the society/family and it boosts their self-esteem?

A BIG yes. We have seen a transformation in personalities and acceptance in society for the PwDs/those with special needs. A financially independent and confident PwD works as a motivation and inspiration for the entire community and inspires a complete generation of PwDs to come forward and give their best to create a good life for their own self.

Would you like to narrate an incident that touched your heart and left you emotional?

A transgender person working with us was into begging earlier. Working with us was her first “dignified” job. She put in all her efforts to adapt to the hospitality segment. She was skeptical and afraid and was not sure if customers would accept her, but she has managed so well. We have visitors who come from far just to listen to her stories and celebrate their birthdays with her. It touched my heart when a family said that they had always perceived a transgender person in a bad light and that they never knew that they can be so loving and caring.

Pic credit: Priyank Patel

‘Unbound’ … a spinal cord injury awareness series

Mrunmaiy Abroal celebrated the 2017 Christmas with her friends. She returned home and showed some of the pictures to her parents. Her mother beamed when she saw one picture and said: “You have blended so well with the others. It does not look like you are in a wheelchair. This picture makes your disability invisible.” For Mala Abroal, her mother, the picture is still very special as it blends her daughter with her friends. Inclusion … that’s all that people with spinal cord injuries ask for. The injury may have hampered their ability to walk, but they are still the same from within. It may have put restrictions on them, but it does not change their ability to love their better-halves, parents, and children. A spinal cord injury does not mean they should put their lives, dreams, ambitions, and aspirations on hold. No, they are not “different”.

I have known Abroal since college days. Some friendships are meant to last. It was that. Though we were not always living/working in the same city after we graduated, we stayed connected. In 2011, one Saturday, she invited me to her place to stay over. While gazing at the sparkling lights of Mumbai from her 10^th-floor apartment, we chatted until the wee hours of the morning and even planned a trip to Turkey.

Two weeks later, a phone call at 10 pm informed me that her car had met with an accident while she was returning from Nagpur back to Mumbai with her parents. A few days later, I was informed that she had an ‘SCI’. I had no idea what that meant. I googled and read about spinal cord injuries (SCI). However, it was only after I visited her in Nagpur a couple of months after the accident that I came to know the exact nature of her “permanent” injury – quadriplegia … paralysis of all the four limbs and torso.

What’s incredible is the way she has handled the life-altering crisis. Today, when I see her chasing her goals at her workplace, travelling like she used to before, and finding time to pursue her hobbies like scuba diving and parasailing, my heart swells with happiness.

I have met her multiple times in different cities in all these years, mostly at high-end cafes that are wheelchair-friendly. And yet, we have had people stare at us when I would sometimes feed her, while she would manoeuvre her wheelchair around, or when her helpers would physically lift her and shift her in her car.

Unlike some of the countries in the Western part of the world, in India, because of attitudinal barriers, persons with disabilities continue to grapple with the challenges of access, acceptance, and inclusion. To sensitize people, September is dedicated to spread awareness about spinal cord injuries. We spent the whole month talking to those who are living with a spinal cord injury.

Our series, ‘Unbound’, is an attempt to bring to you their incredible journeys. Each story is an inspiration — some found strength in sports, others in academics, while a lot of them are busy looking after their children and managing their families and at the same time being financially independent. Inclusion and acceptance … that’s all that they are asking for.

Read Mrunmaiy’s story, Ishrat’s story, Rafat’s story, Garima’s story, Preethi’s story, Suresh’s story, Kartiki’s story, Ekta’s story

“If you are hiring a person with a disability, you don’t have to lower your expectations”

Mrunmaiy Abroal is a communications professional, who is presently working with Amazon in Bangalore. In 2011, she suffered an injury in her spinal cord, which left her in a wheelchair. In this story, she shares her journey of recovering from the accident, getting back to work, and the challenges of working in an office

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Swati Subhedar

Picture this. Persons with disabilities (PwDs) form less than 0.5% of staff in India’s top firms. This, when as per the 2011 census (updated in 2016), there are 2.68 crore persons with disabilities in India, which is 2.21% of the whole population.

Because of the lack of support and access to the right tools and opportunities, majority of persons with disabilities don’t manage to find employment. Those who do, face serious difficulties at workplaces as most offices continue to remain inaccessible or are not very inclusive when it comes to accommodating persons with disabilities.

The problems are manifold, but the most important one, according to Mrunmaiy Abroal, 39, a communications professional, who is presently working with Amazon in Bangalore, is sugarcoating the definition of ‘persons with disabilities’.

“We live with our realities. I live with my disability day in and day out. I am aware of what my body can or cannot do. Glorifying the situation and addressing us as ‘people with special abilities’ or ‘divyang’ is incorrect. People think that it will make us feel good, but it does not. Words like disabled, visually challenged, hearing-impaired and the one closest to me, wheelchair-bound, have negative connotations. Just call us ‘people with disabilities’, which is the most appropriate, politically correct, and globally-accepted term,” she said, and added: “I am a daughter, a sister, a team leader, a travel buff, a Bollywood fan, and also a wheelchair user. I’m so many things. My disability is not the only thing that defines me.”

In June 2011, Abroal’s life changed forever. She suffered an injury in her spinal cord after a road accident, which left her in a wheelchair. In this story, she shares her journey of recovering from the accident, getting back to work, and the challenges of working in an office. Most importantly, she sheds some light on how persons with disabilities should be treated at a workplace and things that companies should keep in mind while hiring a person with a disability.

**Although Mrunmaiy started working three months after the accident, it took her two years to accept her new life.**
**Image: Facebook**

Injury and recovery

“We were on our way from Nagpur to Mumbai. I have no memory of the exact moment when the accident happened in the wee hours of the morning, but I remember opening my eyes in a hospital and not being able to move any body part except for my eyes and eyebrows. I was told I have an injury in my spinal cord that had resulted in quadriplegia — paralysis of all the four limbs,” she said.

It was only after she moved to the Indian Spinal Injuries Centre in Delhi for her rehabilitation that she came to know the exact nature of her injury and that it was permanent. “It was shocking and depressing. But I had to accept and move on. The experience at the rehabilitation center was both, helpful, and frustrating. The transition from ‘I can’t do this anymore’ to ‘Okay, I can at least do this’ wasn’t easy. However, I met many positive therapists and befriended others with spinal cord injuries. They all guided and motivated me, and I never felt alone or lonely,” said Abroal.

**After the accident, her life changed completely, but she never stopped trying and exploring. Image: Facebook**

Moving on

Quadriplegia meant she was dependent on others for basic things like brushing her teeth, getting up from the bed, and drinking water. “It was frustrating. I would often go into a shell. People around me told me not to cry or overthink. But I couldn’t help that. It was an emotionally draining phase. There were people who went away without saying good-bye. I would often let sadness take over,” said Abroal while talking about the initial days.

Gradually, acceptance happened. She started celebrating small victories and achievements like moving her hand, to be able to sit to the count of 100, and relishing chicken after months of liquid diet to keep herself motivated.

“Living life at a slow pace allowed me to spend time with myself, to think, to ponder. I loved the quiet moments. I had enough time to watch squirrels make their way from one tree to the other, bask in the sun, experience the complete cycle of trees shedding their leaves, and coming back to life again,” she said.

**Travelling isn’t the same anymore, but Mrunmaiy makes sure to explore new places. She writes about the places she visits so that people know which places are wheelchair-friendly and which aren’t**. **Image: Facebook**

Getting back to work

Although Abroal started working three months after the accident, it took her around two years to accept the new way of living and gain her confidence back. “When I joined work after the accident, I wasn’t the same anymore. I couldn’t work like I used to before. I would compare myself with the old me. Anxiety took over. Being a communications professional, my work involved meeting a lot of people. Initially, I wasn’t very comfortable meeting my clients in a wheelchair. There were times when I had to give demos about our new apps, but I couldn’t use my fingers. At times, my cousin would help me while I did the talking. At times, the journalists would take over the demo part, while I explained things to them,” she said.

Taking one day at a time, Abroal took charge of her life and career. In the initial years, she had the opportunity to work from her home in Nagpur, however, she started travelling for work after a year of the accident. Work kept her motivated. “My work gives me immense satisfaction. It’s the only thing I can do on my own, so I give my 100% to my career. I don’t make long-term plans, but I definitely set up higher, short-term goals at my workplace,” she said. In 2017, when a very good opportunity presented itself, she shifted her base from Nagpur to Bangalore. It was a big shift for her, and for her mother, who moved along with her.

**Recently, she participated in the 30th Karnataka Para Games 2020 and won a gold medal. Image: Facebook**

“You need not lower your bar. Be inclusive”

It often happens in a workplace that employees are not sure about how to deal with a colleague with a disability. When asked to comment on this, Abroal said: “Let me tell you a little secret. People with disabilities are also humans. Just approach them like you would approach a colleague or a new employee in the office. You could use the same conversation starters that you would use with the others. Just be kind, patient, and understanding.”

As per Abroal, there are little things that employees must keep in mind if they have persons with disabilities working in the office. Firstly, empathize, but don’t go overboard. “For instance, if you see a person with a disability struggling to get into a lift, approach him/her, and ask if he/she needs help. In all likelihood, he/she may not. But don’t just jump to help the person. Let me give you an example. In the office, I use a motorized wheelchair. At times, I am not able to maneuver it smoothly when the passages are too narrow. It often happens that suddenly someone will come from behind and start pushing the wheelchair in order to help me. The wheelchair weighs around 100 kgs. Even if you try pushing it manually, it will not move, and this act of people causes me a lot of inconvenience. Just ask first,” she said.

She, however, says there is a thin line. At times, persons with disabilities hesitate to ask for help. “I’ve been with my team for quite a few years so I’m extremely comfortable asking them to take out my medicine from my bag and give it to me every day at 1 PM and 5 PM. When we go out for lunch or dinner, it is assumed that the person on my left or right will help me. When I am around strangers, I look for a friendly face; someone who makes eye contact and ask that person for help. But there are many who hesitate”

Check out her parasailing video.
Video credit: Mrunmaiy.com

According to her, small acts go a long way in building trust and creating a work environment wherein each person is comfortable because they are accepted as they are. “Do everything in your power to be inclusive. If you are going out for lunch or for coffee, don’t assume that we would not like to join you. If you are taking a coffee break, don’t avoid taking us along thinking it would be inconvenient for you,” she said.

At times, at workplaces, disability per se does not limit persons with disabilities, but the infrastructure around them makes things difficult for them. “I cannot walk, so use a motorized wheelchair. I cannot type with my fingers, so I use the dictation software. But infrastructure is beyond my control. For instance, one of the floors where my team shifted had only turnstile entrances. It was difficult for me, but my facilities team was inclusive enough to replace them with the regular doors. It would really help if workplaces ask persons with disabilities about their specific requirements and be accommodating. For instance, even before I joined, I informed my team that I would prefer a desk whose height could be adjusted as I work sitting in my wheelchair. They were kind enough to oblige,” she said.

When asked if there is any advice that she would like to give to workplaces that are open to hiring persons with disabilities, she said: “If you are hiring a manager, you must look for a person who best fits the role. However, if one of the candidates happens to be a person with a disability, you don’t have to lower your bar. Don’t judge him/her based on the disability. Also, while calling someone with a disability for an interview, be sensitive towards the kind of disability he/she has and make appropriate arrangements.”

Watch her scuba diving video.
Video credit: Mrunmaiy.com

“Don’t put your life on hold”

Abroal has always been an outdoor, adventure-seeking person. She loves trekking and has participated in car rallies. Her weekends were reserved for travelling, exploring, meeting friends and making new ones. This was before the accident. With the spinal cord injury, she felt as if someone had clipped her wings. “However, meeting others with spinal cord injuries helped. They all are incredible and doing some amazing work, personally and professionally. Some are into sports and adventure. They helped me realize that I need not put my life on hold. I can still pursue my passions. Thanks to them, I could go scuba diving, parasailing and even participated in the 30^th Karnataka State Para Games 2020. Winning a gold medal was truly special.”

Travelling is another thing that she is passionate about. “A lot of things are not the same anymore. For instance, now I have to hire a car that has enough space for my wheelchair, depending on where I am travelling to, I have to decide whether to carry my manual wheelchair or the motorized one, the hotels have to be carefully chosen and flying isn’t as easy anymore. But thanks to my family, my extended family, and my support staff, I have managed very well so far. I don’t restrict my outings to work-related travel. I make sure to explore new places wherever I go. I write about the places I visit so that people know which places are wheelchair-friendly and which aren’t,” she said. To know more about her journey and read her travel blogs (Wheelchair Wanderer) visit her website mrunmaiy.com.

This is Part 1 of our series ‘Unbound’ – a spinal cord injury awareness series. Read Ishrat’s story, Rafat’s story Garima’s story, Preethi’s story, Suresh’s story, Kartiki’s story, Ekta’s story

“There is no dearth of talented sportspersons in Kashmir. Give us facilities”

In 2019, Kashmir was virtually cut-off from the rest of the country after Article 370 was revoked and the state was put under lockdown. Why the Indian Army and the Jammu and Kashmir police were tracking down Ishrat Akhtar, a wheelchair basketball player, is a fascinating story, but also a grim reminder about how difficult it has been for sportspersons, especially para-sports players, from Kashmir

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Swati Subhedar

On August 25, 2019, Ishrat Akhtar, a wheelchair basketball player from Bangdara village in Baramulla district, about 54 kms from Srinagar, was holed up in her house. The state was virtually cut-off from the rest of the country after Article 370, which gave Jammu and Kashmir special status, was revoked on August 5 and the state was put under lockdown.

There was a knock at the door. Akhtar’s father Abdul Rashid Mir, who works in the water department in the Public Health Engineering Department in Baramulla, froze when he opened the door and saw Army and police personnel standing outside. A policeman was holding his daughter’s photograph. He asked Rashid if Akhtar was his daughter. Rashid nodded. What happened next was the most thrilling experience of twenty-four-year-old Akhtar’s life.

Why the security personnel were tracking Akhtar is a fascinating story, but also a grim reminder about how difficult it has been for sportspersons from Kashmir, who have to deal with situations that are beyond their control. For Akhtar, who represents India on the world stage in wheelchair basketball, life has been full of challenges from the moment she met with a life-altering accident in 2016 and decided to give wheelchair basketball a try a year later.

**Twenty-four-year-old Ishrat Akhtar represents India on the world stage in wheelchair basketball.**

The accident, recovery, and taking up basketball

Akhtar’s life changed forever in 2016, an uneasy year for the Kashmir valley. In a freak accident, she fell from the ledge of the second floor of her house. The fall was so bad that she injured her spine and had to be taken to the district hospital in Baramulla, and later, had to be shifted to the Bone and Joint Hospital in Jammu. Shifting her from one hospital to the other was a task for her family as the Kashmir valley was in a state of turmoil at that time and it was affecting her treatment. She was operated upon six days after her fall, but even after the surgery, she could not feel her legs. Her world came crashing down when she overheard the doctor telling her father that she was paralyzed because of the spinal cord injury and she would have to spend the rest of her life in a wheelchair. After returning home, she was bedridden for eight months.

“I had never seen a wheelchair before and the fact that I had to get used to it was making me depressed,” she said. A few months after the fall, she visited the Voluntary Medicare Society in Bemina, Srinagar. The center helps in the rehabilitation of physically and mentally challenged individuals. “I was here for about a year. Initially, I would exercise, and thanks to the physiotherapy sessions, I could at least sit. The boys over there would practice wheelchair basketball. One day, I decided to join them,” said Akhtar. That moment changed her life.

“I didn’t even know I could play basketball, but I was good at it. I attended my first camp at the Srinagar Indoor Stadium in 2018. My performance was good and I was selected for the nationals that were organized in Tamil Nadu. I was the only girl from Jammu and Kashmir. In 2019, I visited Mohali for the second nationals. I made it to the Indian team as my performance was good,” she said.

**Ishrat’s life changed the moment she decided to give wheelchair basketball a try**

When the Army and police came knocking

“In August 2019, the Wheelchair Basketball Federation of India was trying to get in touch with me, but the phone and Internet connections in the valley were badly hit, and so it couldn’t,” said Akhtar. The Federation wanted to inform Akhtar that she had got selected for the Asia-Oceania Wheelchair Basketball Championship, scheduled to be held in Thailand in November-December that year, and had to go to Chennai to attend a national camp. It was an important championship as it was also the qualifying event for the 2020 Tokyo Paralympics.

How Akhtar was eventually tracked and how she made it to the camp in Chennai is the most thrilling experience of her life. “Former Navy officer Louis George is the coach of the India women’s wheelchair basketball team. He was casually talking to his friend Colonel (retired) Isenhower. George sir mentioned that he was not able to get in touch with me. Isenhower sir asked for my photo and my address. George sir didn’t know my exact address, but he knew that I lived in Bangdara village,” she said over the phone, her voice beaming with excitement.

She added: “Isenhower sir first got in touch with the Army. The Army contacted the Jammu and Kashmir police in Baramulla. The Army men posted there, along with some police personnel, reached Bangdara village. They didn’t know my exact address, so they knocked on each and every door and that was how they found me! I am grateful to the police and the Army for tracking me down,” said Akhtar.

It was for the first time that Akhtar was stepping out of her house when the situation in the valley was so tensed. Plus, she was escorted by the police and Army personnel, who had made arrangements for her to fly to Chennai for the national camp, which made her nervous. But when the entire village came to cheer for her while she was leaving, that motivated her. “When I reached the camp in Chennai, everyone was so happy and also very surprised that I had made it,” said Akhtar.

Ishrat with Union Minister for Youth Affairs and Sports, Kiren Rijiju, who gifted a sports wheelchair to her

“There is no dearth of talent”

After attending the camp in Chennai, Ishrat also got an opportunity to meet Kiren Rijiju, the Union Minister for Youth Affairs and Sports. “He was very kind and promised all the help. He also said that he will provide me with a sports wheelchair,” said Akhtar. The wheelchair did arrive almost a year later, at a time when Ishrat was dealing with another lockdown. This time it was the nationwide coronavirus-induced lockdown.

When asked how has she been practicing during this lockdown, Ishrat said: “I had to attend a camp in Surat. My tickets were booked. But I had to cancel that because of coronavirus. It was disappointing. But I am happy that I got the wheelchair, which was promised to me. It will help my game considerably. It’s difficult to practice in a regular wheelchair. But because I could not go to my academy because of the lockdown, I would practice at home. There are many talented players in Kashmir, but they don’t get opportunities as there are no facilities. It’s even more difficult for para players like me. The government should look into this,” she said.

When asked if the two subsequent and prolonged lockdowns in Kashmir and the intermittent episodes of disturbances have affected her game, she said: “Yes, but these things are beyond anyone’s control. I have to get used to the problems. For instance, the academy where I train is 75 kms from my place. It takes me 1.5 hours to reach the academy. Now, they send a vehicle, but earlier, my father would take me and bring me back. I owe my success to him and I want to win medals for him.”

This is Part 2 of our series ‘Unbound’ – a spinal cord injury awareness series. Read Mrunmaiy’s story Rafat’s story Garima’s story Preethi’s story, Suresh’s story, Kartiki’s story, Ekta’s story.

“My husband is my spine, and my daughters are the miracle that completes my life”

Rafat Siddiqui’s journey to motherhood began eight years after her life-altering accident in 2010. In this interview, she talks about her supportive family, the special bond that she shares with her husband, embracing motherhood and her daughters who mean the world to her

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Swati Subhedar

“It was a miracle. I asked my husband to buy me a pregnancy kit. In my head, I knew the test was going to be negative, but, in my heart, I was hoping for it to be positive. Those few minutes were the longest of my life. The result made me numb,” said Rafat Siddiqui, 35, who has been in a wheelchair for the past 10 years after meeting with an accident in 2010 that seared her spine.

Given her condition, she knew the pregnancy was going to be tough on her, but her little babies would kick her and they gave her the strength to carry on with the painful nine months. Born prematurely, her twin daughters were too fragile and tiny and were moved to the Neonatal Intensive Care Unit (NICU) even before she could touch them. When she held her daughters, Fatima and Safiya, for the first time after 10 days, she whispered to them: “I am your Amma, and you are my girls.”

Rafat was just 25 when she met with the accident. She had been married for two years then and life was full of love, hope, and dreams. Being confined to a wheelchair was tough. Being dependent on others for basic needs was heart-breaking. However, the incredible support that she got from her family, especially her husband, gave her the strength. “My husband is my spine, and my daughters are the miracle that completes my life,” she said.

The daughters are two-year-olds now. “There was a time when they were so tiny that they would fit in my husband’s palm. Now, it’s difficult to catch hold of them. They say ‘a child gives birth to a mother’. It’s so true. From the time they have entered my life, even before they were actually born, there’s nothing that’s more important than them,” she said. In this story, she talks about these special bonds.

**Rafat’s journey to motherhood has been quite incredible. Image: Mrunmaiy.com**

When an ill-fated moment changed her life

Rafat, the eldest among the three siblings, was born in Nagpur but grew up in Mumbai. Her parents managed to give them a wonderful life. She got everything that she wanted, except for a Scooty, which she had been asking for since she turned 15. She graduated, took up a part-time job, and even did a computer course, in a hope that her parents would buy her a Scooty, but that did not happen.

At 23, she got married. Like a typical Mumbai girl, she juggled between her job and managing her house. She loved her routine — wake up early, prepare breakfast and lunch for all, finish household work, go to the office in a crowded Mumbai local train, come back in the evening, have a cup of coffee, chit-chat with her in-laws, and then prepare dinner for all. She would happily spend most of her Sundays in the kitchen cooking something special for her family. The accident changed everything.

In 2010, around the time she met with the accident, she had taken a break from her work to make arrangements for her brother-in-law’s wedding. The house was buzzing with activities, there was a lot of shopping lined up and the house was being renovated. The silver lining for her amid all the craziness was that she was given a Scooty to run errands.

One day, she had to accompany her husband to his office. There was a lot of traffic, but it had cleared by the time she was returning. This time, her sister was accompanying her. Suddenly, she fell off her Scooty – just like that. They were driving slowly, carefully, there was no traffic, they didn’t bump into anyone, no one hit them from behind. And yet, she fell off. Strangely, there was not a single scratch on the vehicle, and her sister was unhurt too.

Of confined life and strengthening bonds

She was taken to a hospital as she had multiple bruises and concussions. After several tests, scans, and MRIs, the family was informed that she had also suffered a spinal cord injury … “That’s how she is going to be. Neck down, no movement, no sensation.”

Her family, especially her husband, was very supportive. “When the doctor informed him about my injury, my husband asked him to carry on with the treatment and said he would be by my side all my life irrespective of whether I was going to be in a wheelchair or confined to a bed. After I was discharged, my father arranged for therapists for me,” she said.

The therapy sessions were painful, but after three to four months, she could at least move her neck, fingers, and had trunk control. The family even opted for Stem Cell Therapy treatment. They first went to a private hospital but found the treatment to be too costly. Then they went to Sion Hospital, (a government hospital in Mumbai). “I was only six months into the injury. The doctors tried to accommodate me saying my body may show a good response. It was a difficult process. I spent two days at the hospital and had to do a lot of exercises after returning. I am not in a position to say if the Stem Cell Therapy treatment was 100% effective, but after six months there was a little sensation in my body. I could take baby steps with the help of a calliper and a walker,” she said.

However, there were setbacks. “I got a foot nail ingrowth, which was quite deep. It resulted in my body to fall back. I had to start all over again. Every time my body showed some improvement, I had to stop because of pressure sores or weakness or some other reason. That became my life then,” said Rafat.

She moved back to her in-laws’ place and hired an attendant. She started working as a freelance content writer, which boosted her confidence. She also started meeting others who were dealing with spinal cord injuries, which motivated her further. Life, however, in her own words, had become very monotonous. It was her husband who played a key role in keeping her happy and motivated. He would take her to malls and they would often go out to eat paani puri.

When asked if the bonding between them has strengthened after the accident, she said: “It’s been more than 10 years, but my husband has never mentioned my condition to me. In fact, he shuts all those around me who say hurtful things, or pull me down. We have been married for 13 years, so we have had our share of ups and downs, but one thing I can say with full conviction is that my husband is my spine. Alhamdulillah, he’s one of the choicest blessings from the Almighty.”

She believes that nothing stops persons with disabilities from being good partners. “When someone accepts a person with a disability as a partner, that relationship is very special. Yes, there is love, but there is also a lot of understanding. They are a lot more patient and they care about each other a lot. The whole chemistry between them changes as they know that life is going to be more demanding, and full of sacrifices,” she said.

**Rafat with her daughters Fatima and Safiya**

Embracing motherhood

In 2017, Rafat went on a pilgrimage to Mecca along with her family. The trip was special as it was her first long-distance travel after the accident. After returning, the couple came to know about the miracle.

“Frankly, it just happened out of the blue. Considering my physical condition, the amount of pain and spasms, and involuntary movements in my body, my husband would avoid making any close contact with me as he didn’t want me to go through the pain. However, the Almighty was happy with us and wanted us to experience parenthood. When the pregnancy test came positive, we were too shy to disclose it. Also, we wanted to be completely sure before we could reveal it to our families,” she said.

The first visit to the doctor was crucial as they had to weigh all the pros and cons given her condition and the effect the pregnancy was going to have on her mind and body. It was decided that they would “take a call” if it was going to take a toll on her health. But Rafat was not in a mind to take any such call. She had decided she wanted to be a mother.

She was aware that carrying twins was never going to be easy. “I had to stop all my medicines. I couldn’t exercise. I would be sick all day and all night long. I wouldn’t talk much. I couldn’t sit properly. I would feel uncomfortable if I would lie down for too long. I would have severe mood swings. There were typical pregnancy issues like vomiting, dizziness, breathlessness, and BP,” she said, adding: “It worsened as the babies grew. There were days when I couldn’t even take the smell of food. Managing my bowel and bladder was another challenge. It was taking a toll on my body, but my babies kept kicking me, reminding me to be strong and positive.”

Being a mother

The babies arrived before the due date and were underweight and quite fragile and were moved to the NICU. “I couldn’t enter the NICU because of the wheelchair and as men are not allowed inside a NICU, my husband couldn’t see them either. They were just 1.4 kgs when they were born. Now they weigh 11 kgs and the credit goes to my parents and siblings. Their feeds, massages, naps, baths, crying and tantrums … my parents handle everything. It does get overwhelming at times with all the sleepless nights and days, anxiety and palpitation, tears and fears, struggle and losses, sacrifices, and compromises. Not just for me, for everyone. But my daughters are the apples of my eyes and my source of energy. They are the miracle that makes my life complete,” said Siddiqui.

This is Part 3 of our series ‘Unbound’ – a spinal cord injury awareness series. Read Mrunmaiy’s story, Ishrat’s story Garima’s story Preethi’s story, Suresh’s story, Kartiki’s story, Ekta’s story.

“It’s a task for me to move from one building to the other. So, I attend just one lecture a week”

Because of infrastructural woes, thousands of students with disabilities are grappling with the challenges of access and inclusion. Garima Vyas, who is in a wheelchair ever since she met with an accident in 2016, is fighting a lone battle as her university says it needs a nod from the government to make alterations in the heritage structure of the building to accommodate her

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The usual buzz is missing in colleges and universities across the country as most of the educational institutes have resorted to virtual teaching in the wake of the coronavirus pandemic. However, that was a ‘new normal’ for Garima Vyas, a second-year student of Psychology studying at the prestigious Maharaja Sayajirao University (MSU) in Vadodara, Gujarat, even before the pandemic.

She would attend just one lecture in a week, but even that would turn out to be an exhausting and frustrating experience for Vyas, who lost her freedom to move around freely just a day before Independence Day in 2016. A freak accident sheared her spine and left her in a wheelchair. Despite the setback, she managed to excel in her 10^th and 12^th standard exams. She is optimistic to continue the winning streak in her graduation as well, however, the many infrastructural barriers that she must encounter while maneuvering her wheelchair across the university campus are proving to be major roadblocks.

“There is a flight of stairs right at the entrance of my department building. My mother, who accompanies me to the university to help me around, must literally pull the wheelchair up the stairs. This is very dangerous as even a minor slip could lead to a major disaster. My mother has developed a knee problem due to this, so it’s difficult for her to do this every day. Also, it’s a herculean task for me to move from one building to the other in a wheelchair. So, I decided to attend just one lecture in a week,” said Vyas, 19, who is a paraplegic, a condition wherein a spinal cord injury paralyzes the lower limbs.

She is not fighting this battle alone. Because of infrastructural woes and attitudinal barriers, thousands of students with disabilities across India are grappling with the challenges of access, acceptance, and inclusion.

**Garima has always been an outdoor, fun-loving person.**
**Image: Facebook**

The day that changed her life

Talking about the fateful day, she said: “Since childhood, I have been on numerous treks. On August 14, 2016, we went on this trek to Pavagadh (a tourist location 50 kms from Vadodara city). That day we had taken a different path to trek up. It was an easy trek and nothing untoward could have possibly happened. There was a waterfall on the top of the hill, and I decided to bathe under it, like I always did. There was a man in front of me. He slipped and accidentally kicked my abdomen before falling off. There was a rock behind me, so I did not fall, but the kick was so hard that I hit the rock and it sheared my spine.”

With the help of the locals, she was transported down with the help of a makeshift cradle that was made with the help of a bedsheet that the family was luckily carrying and a bamboo stick. They immediately called for an emergency ambulance and managed to reach a government hospital in Halol – 13 kms from Pavagadh — in the nick of time to be able to take a crucial shot that is paramount for persons with spinal cord injuries.

“It was a painful journey. I had broken some ribs as well that were puncturing my lungs so I couldn’t even cry. But at some point in time I did realize that it could be something serious and I needed to be strong,” she said.

She was moved to a hospital in Vadodara, and the next day, she was operated upon. During the prognosis, the doctors predicted that she may not even be able to sit for the rest of her life. But luck was on her side and she defeated fate. It was, however, a life-altering moment in her life.

**Her hobbies include playing the keyboard, stitching, writing and cooking. Image: Facebook**

Dealing with challenges

Despite the challenges that life suddenly threw at her and the painful five-six-hour long daily physiotherapy sessions, Vyas scored a CGPA (Cumulative Grade Points Average) of 10/10 in her 10th standard and topped her school in 12^th standard in the Humanities stream. Her school, Bright Day, was kind enough to make alterations in the school building to accommodate her, but the MSU university experience has been quite the opposite.

“We have requested the authorities at the university many times to make some changes in the campus to make my life easier. Every time they tell us that being a heritage structure, they would need the government’s permission to make any changes and that would take long,” she said, adding, “As per the Rights of Persons with Disabilities Act, 2016, it’s a prerequisite for a government or public building to have facilities for persons with any kind of disability. If the buildings aren’t accessible, the authorities should be flexible enough to make the necessary changes at the earliest. My faculty is aware that my mother and I struggle every time. In such a scenario, getting permissions shouldn’t take so long.”

She is, however, glad that the university is making some changes in the infrastructure with the help of Vadodara-based non-profit organization Enable Me Access. The progress is slow, but she is glad that the changes are happening.

**Undergoing a major pressure sore surgery in 2019**

Need to be more inclusive

Vyas, however, said it’s pointless to put the entire blame on the university authorities as even the engineers who design these buildings or have been assigned to make alterations to the infrastructure are clueless about how to make the changes keeping persons with disabilities in mind. She narrated a terrible experience when she used the university washroom this one time.

“I couldn’t even enter the regular washrooms as the doors were too narrow, so I went to the staff washroom in the Psychology department. At that time, I was already dealing with a two-inch deep pressure sore (damaged skin and muscular tissues caused by staying in one position for too long. Those who use a wheelchair are always at risk), which was quite severe. It got exposed to the unclean toilet seat and the infection worsened after a few days. I had to get the pressure sore closed surgically,” said Vyas.

Another area that needs urgent attention, according to Garima, is to sensitize people. “People often stare at persons with disabilities or just jump to help rather than asking them if they need help. I don’t blame them. That’s the way our society is. These things should be taught since childhood. The problem is that we don’t encourage our children to ask questions. As a result of this, when they grow up, they lack the maturity to deal with such situations and hence end up staring at someone who is in a wheelchair. Even if they want to help, they don’t know how to offer help or what to say,” said Vyas.

She often faces this problem, but she has learned the hard way that if you can’t change something, get accustomed to it or ignore it altogether. Another ‘new normal’ that she has gotten used to is that there are limited recreational places like malls, multiplexes, or restaurants that she can visit after the injury as not all are wheelchair-accessible.

**When she is going through an intense emotional outbreak, she writes a blog. Image: Facebook**

Her coping mechanisms

Accepting these changes must have been a daunting task for a young Vyas. In her own words, at her age, if not for the injury, she could have bunked lectures, partied, travelled, and even dated freely while never losing sight of her academic goals. She did have to deal with pangs of loneliness immediately after the accident, and even now, sometimes, she goes into a zone. When asked what her coping mechanism is, she said: “If I am going through an intense emotional outbreak, I write my feelings down. Writing helps me get my thoughts together. It’s a good emotional outlet. When I calm down a bit, I listen to music, or eat an ice-cream,” said Vyas, whose hobbies include playing the keyboard, stitching, and cooking. You can read her blogs here.

She is glad that she has very supportive parents and a close-knit friend circle, who are her emotional outlets. “I have at least 20-25 people in my life who will drop everything to help me out. They will fight for me, if need be. I am extremely grateful that they are a part of my universe,” she said.

When asked what message she would like to give others dealing with similar injuries, she said: “It was only after my accident that I truly understood the kind of challenges that persons with disabilities face. I especially think about those who belong to the lower strata of society, or those who are not financially independent or those who live in small towns and villages. It must be tough for them. There is a problem of awareness. The government does have many schemes and scholarships for them, but I don’t think they reach them. The NGOs, voluntary organizations, and ordinary citizens can play a big role in bridging this gap.”

This is Part 4 of our series ‘Unbound’ – a spinal cord injury awareness series. Read Mrunmaiy’s story, Ishrat’s story, Rafat’s story Preethi’s story, Suresh’s story, Kartiki’s story, Ekta’s story.

“We only ask for a level playing field that fulfills our basic right to equal rights in education and employment”

In 1998, Preethi Srinivasan went on a college trip to Pondicherry. A freak accident left her paralyzed below the neck. Life has been a constant struggle after that, but the sportswoman in her is always determined to take each problem head-on. If you are a girl/woman, you must read this story

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Swati Subhedar

The only child of Vijayalakshmi and Srinivasan, Preethi had a blessed and blissful childhood. She was an exceptional student in school. At the age of 8, she was a swimming medallist, and at 17 she was the captain of the Under-19 Tamil Nadu women’s cricket team. She led the state team to the national championships in 1997.

Her father’s job required him to keep relocating, so in 12 years of school, she ended up attending nine different schools on three different continents. Though it was difficult to be the new girl in school, she is now grateful that she got exposed to various cultures, traditions, and lifestyles. Her decision to come back to India after completing her schooling in the USA had surprised many as at that time everyone in India was desperate to study in the US. However, she wanted to represent India in cricket, so she came back to Chennai and took up a consolidated five-year MBA course. “My life was perfect, and the possibilities seemed infinite,” said Srinivasan, 41.

After completing the first year of her MBA, Srinivasan went to the US to be with her father. That holiday was special as together they drove through the length of California. She returned to Chennai on July 7, 1998. Just three days later, on July 11, her life changed forever.

Srinivasan (then 19) went on a college trip to Pondicherry along with her friends. Post lunch, they went to the beach and played cricket for a while. It was too humid, so the boys decided to go for a swim. The girls too joined them. They were holding hands in about thigh-deep water. Just then a wave ate the sand under her feet, and she stumbled. But being a seasoned swimmer, she dove into the water. As soon as her face went underwater, she felt shock-like sensation travel through her body, and instantaneously she could not move anything. She tried to stand but couldn’t. She held her breath and waited. Initially, her friends thought she was playing a prank, but when they realized something was wrong, they immediately pulled her out. From that moment, she is paralyzed below the neck.

**Preethi with her parents. Image: Mrunmaiy.com**

Rehabilitation and the battle beyond

Srinivasan went to the Rehab Institute of Chicago for her rehabilitation. She met very positive and encouraging therapists at the rehabilitation center. However, soon after that, she suffered a setback when she tried to enroll in a distance education programme for a bachelor’s degree in psychology. “As I was in the top two percentile of the entire American population who had graduated from school and was bestowed with ‘The Who’s Who amongst America’s Students’ award, I could have easily joined any of the top universities in the world. However, I was denied admission into a long-distance programme. I was told by many universities that the course included practical classes and as there were no lifts or ramps, they asked me not to join,” said Srinivasan.

She was devastated by this rejection and couldn’t understand why she was discriminated against. “My father bought me many books, but from 2002 until his death in 2007, I did not pursue any formal education. Later, I completed a Bachelor’s in Medical Sociology, as it did not have any practical classes. When I wished to join Master’s in Counselling Psychology, I was again rejected as the prerequisite for that was a Bachelors in Psychology, which was denied to me earlier. The media highlighted my case and eventually, they were forced to offer me M.Sc Psychology,” she said.

**Celebrating her birthday. Image: Facebook**

“Give us a level playing field”

Srinivasan worked full-time for close to seven years as a writer with a movie-based website using speech activated software. In December 2018, she started pursuing her Ph.D. in Humanities and Social Sciences from IIT Madras. She is also the founder of Soulfree, a charitable organization that was born out of a dream to provide hope for the severely disabled, especially those with spinal cord injuries. “I’m very proud to say that I’m able to provide for my family and am not a burden to anyone, but this transformation has required years of introspection and penance,” she said.

Unlike the developed world, in India, because of attitudinal barriers, persons with disabilities continue to grapple with the challenges of access, acceptance, and inclusion. “An effort must be made to fundamentally change perspectives about disability in the mainstream society,” she said, and added: “The patriarchal, ableist thought process is so deeply entrenched into the psyche that system actually encourages young mothers to abort children who ‘may’ be born with ‘abnormalities’. This is not so far removed from sex-based abortions which are still prevalent despite laws against it.”

Soon after birth, children with disabilities are faced with exclusion, isolation and stigma. They are denied a right to basic education. In India, less than 10% of children with disabilities have access to education and this abysmal figure is even worse for girls. “Education is a great leveller. If every child with disabilities is given the opportunity to attend a ‘mainstream’ school and wheelchair-accessible accommodations are made to ensure equal rights, it would make a world of difference over a period of time. We do not ask for sympathy; we only ask for a level playing field that fulfils our basic right to equal rights in education and employment. The government has several quotas for persons with disabilities, but most of these are not being implemented,” said Srinivasan.

“Stop feeling sorry. Raise your voice”

She was instrumental in setting up functional ramps at the Distance Education building (IDE) of Madras University in Chennai when she was studying there. Unfortunately, nothing much has changed since then. The infrastructure in most of the educational institutes is not designed keeping persons with disabilities in mind. What should be done to change this?

“I think it is time for persons with disability to join hands, raise their voices and demand to be accommodated. An informed government that shows positive intent towards fulfilling the framework of the Convention on Rights of Persons With Disability that it has signed by providing universal accessibility to all public space and government buildings, educational institutions, as well as equal opportunities in employment, India will certainly lay a good foundation towards reintegrating persons with disability into mainstream society,” she said.

She believes that the best way to do this is by encouraging persons with disabilities to enter corridors of power and become the change. She cites an example and says that if a person with disabilities is given employment as the differently-abled district officer, he or she would be able to understand the needs and grievances much better than an “able-bodied” individual.

**In December 2019, Preethi fulfilled her mother’s dream by taking her on a pilgrimage**. Image: Facebook

Women with disabilities don’t have it easy

“In India, just being born a girl is considered a curse, a sign of misfortune and a burden. It is not hard to imagine the plight then, of a girl who is born with a disability or sustains one later in life. It is certainly a double burden that is tremendously difficult to bear,” said Srinivasan.

She feels it is the duty of the government to provide financial support to ensure that a girl child is not malnourished or stigmatized, create rehabilitation centres in the districts to maximize independence and self-sufficiency, ensure primary and secondary education, ensure that all mobility aides and other accommodations are made available to enable access to education. The government should also ensure appropriate employment at the right age or vocational rehabilitation or entrepreneurial options for self-reliance and financial independence and provide opportunities for representation in government offices and the political arena with appropriate quotas.

When asked if there are moments she cherishes, she mentioned about her all-girls trip to Mahabalipuram as, for the first time in 20 years, she spent one night away from her mother and got a sense of independence. “The second trip is closer to my heart. In December 2019. I planned a six-day trip and we travelled more than 2,000 km. It was a beautiful pilgrimage through Karnataka, into Kerala visiting many temples that my mother had wanted to see for a long time but never had the opportunity. I was fulfilling her dream and that gave me such a sense of joy. Also, I sat next to the driver and used Google Maps to navigate the entire six-day stretch and was really proud of myself!” said Srinivasan.

This is Part 5 of our series ‘Unbound’– a spinal cord injury awareness series. Read Mrunmaiy’s story, Ishrat’s story, Rafat’s story, Garima’s story Suresh’s story, Kartiki’s story, Ekta’s story.

“International players come with an entourage. Many of our players don’t even have proper wheelchairs”

Naik Suresh Kumar Karki’s life is akin to a battlefield. Born in Nepal, he joined the Indian Army in 1995, his battalion was posted in Naugaon when the Kargil war was being fought, and in 2004, during an insurgency in Assam, he met with an accident that left him in a wheelchair. However, his second innings as a para-sportsperson is an indication that he is still a soldier at heart – brave, focused and determined

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Swati Subhedar

The coronavirus-induced lockdown forced many people to reschedule their plans or put them on hold. The unprecedented situation was especially upsetting for para-badminton champion Naik Suresh Kumar Karki, 44, who was a national para-badminton champion for six consecutive years between 2013 and 2017 and is presently ranked second in the country. He was excited to participate in the 2020 Summer Paralympics in Tokyo, Japan, scheduled to take place in August-September. It was for the first time that badminton was introduced as a competitive sport at any Paralympics. But the pandemic played a spoilsport, and he could not participate.

Now, to maintain his world ranking — his career-best was 11 in 2017 in singles — he will have to keep playing open tournaments and win international accolades. For Karki, lack of motivation isn’t a problem. Parasports often struggle due to a lack of sponsors and finances.

“Lack of sponsorship and finances are the two main reasons why many talented para sportspersons fail to make a mark,” said Karki. “I got all the help I needed, however, not all are as lucky. If one has to participate in international tournaments, he/she will need a good coach and also a good doctor or a physio to deal with the injuries that come along. That’s basic. When we go out to play, most of the international players come with an entourage. Many of our players don’t even have proper sports wheelchairs,” he added.

Karki has been into sports all his life. When he was in school, he was an avid footballer. An accident in 2004, while he was serving in the Indian Army, left him in a wheelchair. But this did not break his spirit. From 2006 until now he has been a para-sports player and has won various awards and accolades in different sports like badminton, discus throw, javelin throw, shot put, table tennis, lawn tennis, basketball and swimming. He has also won seven medals in various international marathons, which include two gold medals.

**Karki has won these trophies in basketball**

Joining the Indian Army and the accident

Karki was born in Jhapa, Nepal, to a family of limited means. He has two siblings — a brother and a sister. The family moved to their uncle’s home in Chowdangigadi after their father left the house after an altercation and never returned. Karki’s mother raised the children. “My mother worked very hard. It was tough. When I was in the seventh standard, I started taking tuitions to help her financially. I was passionate about football and it kept me distracted from the tensions at home,” said Karki.

When he was in the first year of graduation, his friends informed him about an army selection camp. “I decided to give it a try. My village was in the interiors and I had to walk for three days to reach there. I cleared the initial round. We were given a gate pass (to enter India) and after a few days, I was called to Darjeeling for the final selection. I got selected. That’s how I joined the Indian Army in 1995.”

After one year of service, he went home only to discover that his mother was battling cancer. He took her to Patna, Bihar for treatment, but the doctors said it was too late. His leave was getting over and there was no one to look after his mother. Karki decided to get married to his girlfriend, and she promised to look after his mother. However, his mother passed away two years later.

Karki, who was serving in the 2/9 Gorkha Rifles, moved along with his battalion to Gurdaspur, and then, in 1999, in the middle of the Kargil war, the battalion landed in Nougaon in Kashmir. Karki was a part of many patrolling schedules and ambushes. He even fired a missile that destroyed a Pakistani post.

The battalion then moved to Assam. In 2004, the Bodo conflict was at its peak. “In July 2004, during an insurgency, a friend got injured. I was told to rush him to the Guwahati Army Hospital. We were in an Army ambulance, just an hour away from the hospital. Suddenly, a public transport bus rammed into us. It was a bad accident. The front of our ambulance was completely damaged. I don’t remember, but I think I jumped off,” said Karki.

Karki was taken to a hospital in Guwahati. He was then moved to Command Hospital in Kolkata. “They put grafting rods in my body. I was then moved to a rehabilitation center in Lucknow. I was in a bad condition. I couldn’t even turn in my bed on my own. Four people had to help me. I couldn’t eat and had no bowel or bladder control. I was slipping into depression. One day, I asked the visiting doctor if I would be able to walk again. His reply shattered me completely,” said Karki.

He was given an option to take sick leave and go back home or move to the Paraplegic Rehabilitation Centre in Kirkee, near Pune. It’s a well-known rehabilitation center for defence personnel who suffer spinal cord injuries while serving the nation. His two boys were too young then and going back was not an option. So, he moved to Pune, a decision he does not regret.

**Despite so many accolades, lack of sponsors and finances has always bothered Karki**

Getting back to sports

Even after moving to Pune, Karki was battling severe depression. He completed a computer course at the center to distract himself. There were many sports facilities at the center. He would see his seniors practice. That motivated him, and in 2006, he decided to take the plunge.

He dabbled into many sports like swimming, athletics, cricket, lawn tennis, and table tennis. Within a year, he won medals at the national level for swimming and table tennis. He started playing basketball a year later. It was difficult for him as he didn’t have a proper wheelchair or the strength in his arms. “I would practice like crazy. Others at the academy would comment that I may never get to play international tournaments because my injury was more severe compared to them. These comments would push me to do better,” said Karki.

Basketball proved lucky as the team, under his leadership, was National Wheelchair Basketball Champion for six times between 2014 and 2019. Later, he led the team on several occasions and won medals in international tournaments like the Bali Cup in 2017. Apart from basketball, Karki has also won medals in discuss throw, Javelin throw, shot put, table tennis, lawn tennis, swimming and has won seven medals in international marathons.

In 2013, Karki took up badminton and has so far won 21 medals at the National Para-Badminton championship and a total of five medals at Spanish Open (2015), Indonesian Open (2015), and Uganda Open in (2017). He has participated in many international tournaments. He was ranked Number 1 in India for six years (2013-2018). Internationally, his career-best ranking was Number 11 in 2017.

Karki feels the government should help other para-sports players with finances and sponsors. “I am very lucky that I got support. Others don’t even get an opportunity. It’s very difficult to get sponsors who will support you long-term. A lot of energy gets wasted in finding sponsors. You are on your own until you participate in the World Championship or the Olympics. Yes, the government is now doing a lot for para-sports, but it definitely needs to do more.”

This is Part 6 of our series ‘Unbound’– a spinal cord injury awareness series. Read Mrunmaiy’s story, Ishrat’s story, Rafat’s story, Garima’s story Preethi’s story Kartiki’s story, Ekta’s story.

“We need more training institutes and special coaches”

As a college student, Kartiki Patel would sometimes bunk her classes to play basketball, a sport she was passionate about. However, after an accident that left her in a wheelchair, in the absence of proper information, good infrastructure, and trained coaches, she had to wait for long to get back on the basketball court. This is the story of almost all para-sports persons

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Swati Subhedar

In 2008, Kartiki Patel was travelling with her cousins from Mumbai to Vapi (in Gujarat) when the car swerved off the road at a high speed and toppled multiple times. She was juggled in the car. The accident broke her spine and left her paralyzed below the waist. This was the second big blow that a young Patel suffered in her life.

Born and brought up in Mumbai, She was living her life like a regular teenager until she finished her 10+2 (school). However, her mother passed away when she was in Class 12, and she lost her father when she was in the final year of her undergraduate course. She had been living with her maternal aunt and uncle Shaila and Ashwin Patel since them. With her aunt’s support, she completed her studies and started working at an IT firm. Just when she thought that she had her life in control, the accident happened. That day changed everything.

The hospital she was admitted to didn’t provide her any information about the spinal cord rehabilitation centres in India. A physiotherapist would come home and help her with some passive workouts. She learnt to get off the bed on her own but had no control over her bowel and bladder. Getting out of the house was a challenge. She was gradually slipping into depression. Her friends from her workplace and her boss pushed her to start working again. She joined her office four months after her accident and continued working at the firm for the next eight years.

**Ever since Kartiki was introduced to wheelchair sports, there has been no looking back. Image: Facebook**

Itching to get back to sports

Patel has always been an outdoor, sports-loving person. She is passionate about basketball. The home-office-physiotherapy routine was making her restless. She was itching to take up some sport, however, even after six years of her accident, she could not find anything that was wheelchair accessible.

“In 2015, I decided to learn swimming, however, the coaches were not ready to teach someone with a disability. Also, the pools were not accessible. Finally, my mentor, Sunil Shah, volunteered to teach me. My wheelchair could fit into one of the toilets and I managed to change. I got into the pool with the help of the lifeguards. Although I took a long time to learn swimming it was the best decision I took for myself. I felt so liberated that I was able to move on my own in the pool without any equipment,” she said.

She qualified for the swimming nationals for para-athletes at the end of that year. It was here that she met the president of the Wheelchair Basketball Federation of India, Ms. Madhavilatha. She informed Patel about the first Wheelchair Basketball Nationals to be held in Chennai that year. At the nationals, she met many ex-Army men from Pune who guided her further. She practiced wheelchair badminton and basketball with them.

“Ever since I was introduced to wheelchair sports, there has been no looking back. I played wheelchair badminton for three years and was a national champion for all the three years. After the women’s state team for basketball was formed, I started concentrating on basketball more,” she said.

She added: “I was selected to be a part of the team that was set to play its first tournament internationally. We won a bronze medal at the Bali International tournament in 2017, and I was awarded for my performance and chosen to be a part of the dream team. For the next international tournament in 2018, I was the captain of the Indian Women’s team. I led the Indian team in 2018 and 2019.”

**Being a sportswoman isn’t easy. She frequently suffers from pressure sores, which send her back to the bed for days. Image: Facebook**

Lack of awareness and infrastructural woes

However, all these achievements did not come easy. The problems are manifold, according to Patel. “First, there is a lack of awareness about disability in India among the general population. Second, how will persons with disabilities take up competitive sports if there is no awareness? On top of that, where are the facilities? I struggled because of the lack of awareness and infrastructure,” she said.

When asked if there is a need for more training institutes for persons with disabilities, now that they are representing India at most of the prestigious international sporting events, she said: “Yes, there is definitely a need for more training institutes, accessible training grounds, and coaches who can teach persons with disabilities. We need more coaches who are trained specifically to deal with persons with disabilities. Presently, some colleges offer small courses, however, I do not know of any college that has a course especially designed to train coaches to train persons with disabilities.”

And then there are infrastructural woes. In India, most of the sports complexes and stadiums are not designed keeping in mind persons with disabilities. “To change this, the government should have policies in place to ensure that all sports complexes and stadiums are accessible to all. Merely having policies won’t help. Implementation is a must,” said Patel.

Being a sportswoman isn’t easy. She frequently suffers from pressure sores, which send her back to the bed for days. But there is hardly anything that can deter her spirit. However, according to Patel, not many women take up para-sports after sustaining long-term injuries, as, according to her, unlike in the West, in India, women are not encouraged to take up sports from childhood. “I am lucky as I have always been into sports. But for other girls, it’s difficult to get into sports if they haven’t been active from childhood. I think, men have a slight advantage here. I believe girls/ women should be encouraged to play sports.”

*Kartiki recommends Born to fly* by Nitin Sathe as it’s an inspirational book. Image: Facebook

A go getter

Not just sports, she has been able to fulfil all her dreams, thanks to her supportive family and husband. In 2015, she enrolled herself for a master’s in social entrepreneurship at the Tata Institute of Social Sciences.

“I would not have been able to achieve anything without the support of my family and husband Herman. My maternal aunt and uncle took me into their home after my parents passed away. Both are progressive in their thought process and never stopped me doing anything before or after the accident. Even my husband has been very supportive. There are times when I am away from home for long when I am attending sports camps. He has been very encouraging,” she said.

Being into competitive sports gives her an opportunity to travel a lot. “My most memorable trip was to Spain. It was my first time travelling abroad with a group of disabled athletes. I loved sightseeing in Spain, but the trip was special because I was able to move around without help as all the places were accessible.” said Patel. She believes there are many career options, sports activities and hobbies that persons with disabilities can take up and urges them not to limit themselves or stop exploring. “I would suggest reading Born to fly by Nitin Sathe. This book is a biography of flight officer MP Anil Kumar. It’s a very inspiring book and a must-read for those with a disability,” she said.

This is Part 7 of our series ‘Unbound’– a spinal cord injury awareness series. Read Mrunmaiy’s story, Ishrat’s story, Rafat’s story, Garima’s story Preethi’s story Suresh’s story Ekta’s story.

“The need of the hour is to provide assistive devices at reasonable prices and accessibility to persons with disability”

As this article is being published, Ekta Bhyan is busy preparing for the 2021 Tokyo Paralympics. However, it was only accidentally that she stumbled upon club throw – a para athletic event meant for athletes with limited hand function – a sport that changed her life completely after an accident in 2003 left her in a wheelchair

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Swati Subhedar

“For para-athletes, sports can be a great medium to be financially independent. However, it’s only recently that the government has started promoting para-sports, and there’s a lot that needs to be done,” said Ekta Bhyan, 35, a club throw champion.

However, it was only by chance that she stumbled upon club throw. Though she made a mark for herself within a year of taking up the sport, won medals at the Asian Games and the Grand Prix, and has managed to win several national championships, club throw was something that was not even on her agenda.

“In 2015, Amit Saroha, a Paralympian and an Arjuna Awardee, read one of my interviews, got in touch with me and asked me if I wanted to join para-sports,” said Bhyan. She decided to give it a try and this decision changed the course of her life. This was the second life-altering moment in her life. The first one, in 2003, had left her in a wheelchair.

Accident and the life after

In 2003, after finishing her schooling, Bhyan, who is from Hisar in Haryana, aspired to become a doctor for which she was visiting Delhi for her coaching. The accident happened on the very first day. It was raining. The car she was in was parked and was stationary. Suddenly an overloaded vegetable truck fell on the car. People rushed for help and called for a crane. When the crane managed to lift the truck a little, its chain broke, and it fell on the car again.

With great difficulty, people managed to pull her out of the car but because it was raining heavily, the ambulance arrived very late. People shifted her into the ambulance but provided no support to her neck. She was conscious all this while but could only feel severe pain in her neck. She was taken to a small clinic close by and was later shifted to a government hospital in Delhi. Here, Bhyan and her parents were told she has suffered an injury in her spinal cord.

The doctors at the government hospital refused to operate upon her as it was a complicated surgery. Two days later, she was shifted to the Indian Spinal Injuries Centre in Delhi. The doctors over here made the family aware of the nature of the injury. She underwent three surgeries and spent nine months at the hospitals. The peer counsellors, physiotherapists and occupational therapists helped her adapt to her new life … in a wheelchair.

**Ekta at the Asian para games. Image: Facebook**

Entering the world of sports

The journey wasn’t easy, however, her extremely supportive parents – her father is a retired horticulture officer, and her mother is a housewife – became her pillars of strength. Bhyan — second among three siblings — completed her graduation and post-graduation and secured a job with the Haryana Civil Services.

In 2015, a chance encounter with Amit Saroha, introduced her to the world of para-sports. It was a completely new domain. Initially, it wasn’t easy for her to throw the wooden club, weighing around 400 grams, while sitting in her wheelchair. But she kept on practicing. Her competitive career started with the 2016 IPC Grand Prix held at Berlin in July, where she bagged a silver medal in club throw.

She represented the country in the 2018 Asian Para Games held at Jakarta, Indonesia and won a gold medal. She qualified for the Tokyo 2020 Paralympics, following her appearances at the World Para Athletics Championship (London 2017 and Dubai 2019). She has also competed at the Grand Prix held at Berlin in 2016, Dubai in 2017 and Tunisia in 2018 and has won two medals. She is, at present, the national champion, having secured gold medals in the 2016, 2017 and 2018 National Para Athletics Championships.

**At the World Para Athletics Grand Prix at Tunisia in 2018. Image: Facebook**

“Some state governments could do better”

Bhyan believes that it would help if the government starts promoting para-sports a little more aggressively so that persons with disabilities can explore sports as an option. “India is a late entrant into para-sports as compared to the developed nations. Though India’s Murlikant Petkar won the first medal for India in 1972 in para-swimming, I think it was only after the 2010 Delhi Commonwealth Games that the government started encouraging para-sportspersons too and our representation at major international sporting events went up. Even the media, that could have played an important role in spreading awareness about para-sports, was not covering many events. This changed after the 2016 Rio Paralympics,” she said.

At the 2016 Rio Paralympics, India had sent its largest-ever delegation — 19 competitors in five sports — in the history of summer Paralympic games and created history by winning a total of four medals. And yet, we have a long way to go, according to Bhyan.

“The government’s role is very critical. Accessible stadiums, playgrounds, swimming pools, assistive devices at reasonable prices and adaptive equipment are must to create awareness about para-sports. The need of the hour is that the government forms constructive policies keeping para-sports in mind. After all, there is a direct corelation between good sports policies and great performances at international sporting events,” said Bhyan.

She added: “It is also very crucial to treat para-athletes on par with able-bodied athletes in terms of cash prizes and providing job opportunities. This will motivate them to continue playing sports.”

**It was a proud moment for Ekta when she met Prime Minister Narendra Modi. Image: Facebook**

Provide a level playing field

In India, most of the sports complexes and stadiums are not designed keeping in mind persons with disabilities. What should be done to change this? Bhyan said: “This is the main reason why not many take up para-sports. Lack of proper infrastructure is a big hindrance. Lack of sensitization is another problem. Due to the lack of awareness, people don’t understand the needs of persons with disabilities and hence are hesitant in offering help.”

The government announced in September 2020 that the first-ever Centre for Disability Sports will come up at Gwalior in Madhya Pradesh. The world-class centre, coming up at a cost of Rs 170.99 crore, is being set up by the Union Ministry of Social Justice and Empowerment through its Department of Empowerment of Persons with Disabilities. Now that persons with disabilities are representing India at most of the prestigious international sporting events, is there is a need for more such institutes?

Bhyan said: “Yes, and across the country. Also, we need dedicated coaches. Now, because of the increased awareness, other coaches are coming forward to train para-athletes. They are going out of their way to understand their needs and strengths. This is a big change.”

Among all her achievements, the special one was when she met the Prime Minister. “After I won the gold medal at the Grand Prix in Tunisia, Prime Minister Narendra Modi shared my story on ‘Mann Ki Baat’. I also received a letter of appreciation letter from the prime minister. I got an opportunity to meet him after I won a gold medal at the Asian Para Games in 2018,” said Bhyan.

She believes human beings possess this biggest strength of adapting to any situation. Trace her journey and you will realize that she not just adapted to an unusual situation that life suddenly threw at her but went beyond and conquered.

This is Part 8 of our series ‘Unbound’– a spinal cord injury awareness series. Read Mrunmaiy’s story, Ishrat’s story, Rafat’s story, Garima’s story Preethi’s story Suresh’s story Kartiki’s story