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.
“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.
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.”
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.
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.
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.”
“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