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 storyIshrat’s storyRafat’s storyGarima’s storyPreethi’s storySuresh’s storyKartiki’s storyEkta’s story

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.

Chitrasen Sahu with his family

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.

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Do I look like a person with mental illness in this photo?

I have been working for more than three decades in the disability sector in India. There are many issues in the sector which are very close to my heart. However, the invisibility of mental health issue is something that hurts me the most. Misinformation on mental illnesses and psychosocial disabilities are galore in our country. Reasons may be manifold. One of them might be that one cannot ‘see’ a mental illness?

Shampa Sengupta raised a very pertinent point by posting this image on her Facebook page

I lost my mind (pun intended) and became furious when in the month of August I saw that there were thousands of tweets showing a photo of Sushant Singh Rajput, saying he cannot be mentally ill as he is smiling in the photo and along with that photographs of another actor who was wearing flamboyant clothes, (some not-so-typical outfits for men) and with captions that said ‘this is mental illness.’ Basically, implying that a person who is smiling or good humored cannot have a mental illness and the people who do have a mental illness look a certain way.

This article is not about whether Sushant Singh Rajput was ill or not, the highest investigation agencies in the country are trying to find reasons behind his tragic death and we, ordinary citizens, should not get involved in presumptions on the same.

I got angry and took a selfie ( smiling at the phone) and posted in social media saying “Do I look mentally ill” and elaborated how even with my mental health conditions, I am working and smiling – one can never see a photo and judge the person’s mental conditions. This is not the first time I had to assert my health issue; this has become routine for me.

I work in the cross-disability field, advocacy is my area of work. Unfortunately, even my colleagues from this sector do not understand my kind of disability. So, every time, there is a press-meet or open public meeting, they will say, “We will have someone with a disability as a speaker and make a list of possible speakers.” This list would obviously include those with a ‘visible’ disability, and they would conveniently forget to add my name. Another colleague once told me after I failed to attend a workshop, “Shampa is unpredictable, we should not recommend her name to any seminar workshops anymore.” This happened even though I had texted her in the morning of the workshop saying my depression is in terrible stage today. But she did not take it seriously and called me unpredictable in an office meeting. Would she have said same if another colleague with mobility impairments had said that he could not attend a workshop because his wheelchair broke down? Or a hearing-impaired person said that her Sign Language Interpreter was not available, so her attending workshop is futile? If this is the level of understanding within disability movement, what do you expect from the general public?

For most people, ‘mad’ people are those who roam in the streets, with untidy clothes and matted hair. Some avoid their path, some others throw stones at them, children are taught to laugh at them calling them ‘pagla,’ and very few really understand their pain. The media also uses this image of ‘madness’ very cleverly and reinforces the stereotype. How many movies can one recall where a person with mental illness is shown as studying in college or working in an office? Once, a journalist, after, I mentioned in a meeting that I have a mental illness, asked me “Why did you say that? I have never seen you talking irrationally, so you can’t be mentally ill.” I told him, “You might call me tomorrow 50 times and get no response, because the days I am more depressed, I cannot find strength to take a phone call.” He looked and smiled. Did he believe me? I am not sure. Interestingly, he was there to talk to primary stakeholders in a disability advocacy meeting. So, he interviewed my blind friend and wrote about his journey in the next day’s paper.

My journey within the disability sector itself is quite interesting.  I started working as a professional in early 1990s. I became a caregiver of a person with schizophrenia after my marriage. Though professionally I knew how to deal with different kinds of disabilities, I was not aware of how to take care of my own self in this new role. This is an area where most caregivers fail. Our health system, and government does not provide the necessary insights, training, or financial support to the caregivers. Balancing professional life, taking care of a person with a mental illness took a toll on me. I did not even realize at which point in time, I became the primary stakeholder in this ‘disability sector.’

I do not want to discuss my diagnosis or medical history here. For me, the medical part of my disability does not consist of a lot of space. What I believe is the social acceptance which would have made things easier for me. When I talk about mildest physical discomfort, there will be relatives or friends asking me next day how I am feeling. When I talk about my mood swings or depression, there’s complete silence. I do hope by continuously talking about same, I will be able to bring some change. And in future, people will not say “If he is smiling, he can’t be mentally ill.”

Shampa Sengupta is an activist working on gender and disability rights. She is the Founder-Director of Kolkata based advocacy group named Sruti Disability Rights Centre and is working as Joint Secretary of India’s largest membership based cross disability network National Platform for the Rights of the Disabled (NPRD). 

(This conversation is a part of our series on mental health and illness, as we talk to people whose voices have brought to life, with empathy and without judgement, what is it to live with a mental illness or to care for someone who does.)

Related interviews: Jerry PintoAmandeep SandhuKarishma Upadhya, Shyam Mithiya, Anjana Deshpande, Tanika Godbole.