Spinal Injury – 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

“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