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.

“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.

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

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

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

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

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

Accident and the life after

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

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

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

Ekta at the Asian para games. Image: Facebook

Entering the world of sports

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

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

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

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

“Some state governments could do better”

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

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

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

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

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

Provide a level playing field

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

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

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

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

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

This is Part 8 of our series ‘Unbound’– a spinal cord injury awareness series. Read Mrunmaiy’s storyIshrat’s storyRafat’s storyGarima’s story Preethi’s story Suresh’s story Kartiki’s story