“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.