Include us … that’s all people with spinal cord injuries are asking for

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, they 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.

Similarly, para-sportspersons have to struggle to find wheelchair-accessible stadiums, training institutes and coaches who are equipped to train persons with disabilities.

In some countries, including India, persons with disabilities have to make an attempt to fit in. To sensitize people, September is dedicated to spread awareness about spinal cord injuries. We spent the whole of September 2020 talking to those who are living with a spinal cord injury.

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.

Follow this link (https://bit.ly/2Z73HwC) to read all the eight stories.

‘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 10th-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


“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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“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.

The accident changed her life
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.”

The daughters are two-year-olds now
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 10th and 12th 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 12th 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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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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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 storyIshrat’s storyRafat’s storyGarima’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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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 storyIshrat’s storyRafat’s storyGarima’s story Preethi’s story Suresh’s story Ekta’s story.