Worldwide mobileWOMEN - India

by Amy Saffell

Sarmistha Sinha

I have a pretty sunny outlook on life, but, at times, I still find myself lamenting about certain aspects of having a disability. Accessibility issues, wheelchair malfunctions, healthcare, insurance, transportation issues, attitudinal barriers…there is a lot to deal with sometimes. I do try to put it all into perspective, and one of the things that I think about is how different my life might be if I lived in another country, particularly one where the resources for people with disabilities are scarce and the society’s views of people with disabilities aren’t positive. I’ve always wanted to know what life was like for someone with a disability living abroad, so I jumped at the chance to interview Sarmistha Sinha, a woman living in India with a spinal cord injury. Her struggles and the way that she has persevered have certainly left an impression on me, as I hope it will you.

The Beginning of Sarmistha’s Journey

Sarmistha was injured in an accident in 2005, resulting in a complete T-6 spinal cord injury causing paralysis from the chest down. There wasn’t, and still isn’t, a medical center specializing in spinal cord injuries in the city where the accident occurred, Darjeeling, so she was airlifted to the larger city of Kolkata. Her parents, young daughter, and husband accompanied her to Kolkata, where her spine was fixed at a private neuroscience center. Sarmistha was a medical professional herself with graduate and post graduate degrees in the field of gynecology and obstetrics, and her neurosurgeon was an old classmate and friend, easing her mind that she was receiving quality care.

After surgery, she was transferred to the National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore, for rehabilitation, where she stayed for a month. It was her father, not her husband or mother as one might assume, who learned to serve as her caregiver. Regarding the care that she received at NIMHANS, Sarmistha says, “a coordinated and comprehensive approach towards me by the teams of attending neurosurgeons, physiatrists, and psychiatrists, I found it to be very comforting and helpful, but I had yet to come to accept my new status.” She soon learned that her family struggled to accept her new life, as well. “I discovered my husband’s ill behavior and then indifference towards me with the days passing by, and this was tearing me apart.” He later divorced her after removing her 5 year old daughter from her home and never asking her to move in with him and his new apartment that he found after her accident, despite it being wheelchair accessible. It was a tumultuous few years as they saw each other as part of their jobs, but reality finally set in that Sarmistha’s marriage was over, leaving her just with the support of her parents, whom she lived with after rehabilitation.

Sarmistha’s Daily Life in India

Even in a larger city like Kolkata, Sarmistha even today does not have access to the type of wheelchair and medical equipment that she desires. She has found shower chairs easier to obtain than quality wheelchairs. She would love to have a wheelchair that, as she says, is “sleek in look,” but has had to get what she could. The chairs available have been hardy but not as easy to get around in as she would like. She is excited, though, that she has recently ordered a leveraged terrain wheelchair that will allow her to get out and explore her surroundings herself, something that she greatly looks forward to because her current wheelchair isn't conducive for pushing very far.

A Leveraged Terrain wheelchair

Sarmistha lives alone in the residential medical officer’s housing at her place of employment. Her poor trunk balance does not allow her to perform the same duties as a doctor as before her injury.  She serves now as a medical teacher and researcher at a medical college and medical facility. Although she can’t do the same job as she could before her accident, she has now found a new purpose in helping her students, who themselves have helped her cope with her disability. As she says, “students have become an essential part of my life. In fact, much of my vacuum gets filled up by their presence. They love me and consider me their friend, philosopher, and guide. I am lucky that way.”

As for her home, the quarters where she lives are traditionally reserved for emergency doctors only, but the unit was allotted to her two years ago “on humanitarian ground,” she says. She had previously lived with her parents, her mom supervising household matters and her dad looking after the finances and the care. She welcomed the help, but they didn’t live on the ground floor, and every day she needed to be carried up and down the stairs, a “very crude, risky, and unsightly” process, she says, but there was no elevator there, so it was the only way. Her mom suddenly passed away in 2010, and her dad’s health also began to deteriorate, so he moved to New Zealand to be taken care of by Sarmistha’s siblings. She was left all alone in Kolkata, a very difficult time in her life. She was extremely grateful when she was granted her current living situation. She works Monday through Saturday during the day, but she spends a lot of time at home in bed.

The residence is on the ground floor with a ramp. Although she’s grateful to have a place to live, she does say that there are accessibility problems at the house. “It is not at all accessible or meant for a person in a wheelchair like me,” she says. The ramp inside was not built in accordance with building requirements, but that’s just the beginning. Neither of her 2 bathrooms allows her entry using her wheelchair due to the door width. She must take a bath within the kitchen and attend to her other bathroom needs using a shower commode chair or on her bed and disposing items with the house waste. She washes her clothes in the kitchen sink, but as for cooking, she often buys pre-prepared meals because she can only cook a little in the microwave and prepares tea, coffee, and other drinks on her bed with her electric kettle.

For transportation, she has her dad’s old but durable car. She hasn’t yet gotten hand controls on the vehicle because of the extreme traffic in Kolkata. She finds it easier to transfer into the front seat, with a transfer board, and to fold her wheelchair to put in the back and let someone else drive. Because she lives where she works, she can often conveniently go about her day just by getting around in her wheelchair. She is thankful to have access to a car because there is ZERO accessible public transportation in her area. She remarks that many people with disabilities in India cannot often venture outside of their homes because there simply isn’t a means to do so.

What Brings Sarmistha Joy

As a child, Sarmistha became a trained dancer in Indian Classical Dance. She stopped dancing initially after her accident as she struggled to cope with her new reality, but as her mind and body began to heal; she realized that “music always triggered ripples in [her] body and mind. Thus, a time came when [she] could no more ignore the call! Dance was inevitable.” Despite dancing in a new way, she used her upper body ability to adapt the dances that she knew. She found a unique way to officially rekindle her love of dance, by surprising everyone at a doctor’s association gathering. She told the event organizers that she was going to dance and did so right there on the spot without having her name on the program. When she told them what she was about to do, her colleagues were “startled and confused, but somehow they were convinced that [she] wasn’t joking.” She had worked out an entire routine with one of her students, practicing without anyone knowing. She spoke a little about the fusion of disability and movement through dance before she began, and after her dance, there was silence at first that soon broke way to thunderous applause and even some tears. No one had ever seen anything like it, but Sarmistha knew that dancing was again something that she loved.

Sarmistha has continued dancing, primarily as a duo with a student. She calls it “a partnership and beautiful synchronization between an able bodied person and a person in a chair.” She has gotten other women with spinal cord injuries involved and has been part of group performances. Her dancing has gained media attention, and although she only dances for fun and often doesn’t have as much time as she would like to devote to dancing, she has found it to be a true love in her life.

Sarmistha also loves working with other people with spinal cord injuries, helping them to adjust to their disabilities. She discovered after her accident that India had more specialized spinal units than she had originally realized. She contacted these units and started advocating for those with similar neurological conditions and the related science and sociology of having a spinal cord injury. She often travels to these centers to meet patients, and she loves having an impact on others with disabilities. When speaking about advocacy, she says that “my advocacy is to speak on ensuring equal rights to everyone, that no one is compelled to remain confined with the four walls of his or her house and can live a life with dignity. I am pretty sure that shall not be realized until I breathe my last breath and even many more years thereafter.”

India’s Views on Disability in Society

Sarmistha tells that although there are now more government and private rehabilitation units in India than in the past, “in terms of quantity and quality, the status is not satisfactory. The conditions are even worse if an injury is sustained by a child or a person from a low socioeconomic class or rural area.” The lack of adequate medical care is just the tip of the iceberg. Virtually nothing, from buildings and beyond, is constructed with people with disabilities in mind. She does say that issues related to disability are discussed much more in the media, among society, and in politics than just a few years ago. There is a Persons with Disabilities Act, and more people in power are making time to take positive steps towards better living conditions for people with disabilities, like the construction of ramps, installation of elevators, and assistance in the areas of education and finances.

Because India has such a large, diverse population, Sarmistha notes, the problems in society are too numerous for all to be addressed, and issues relating to disabilities often get brushed aside. People with disabilities are often left to do the best they can with the resources that their communities offer, which are extremely varied depending on the area in which they live. Sarmistha says, though, that attitudinal barriers are still extremely prevalent everywhere. She says, “I feel nobody is truly getting to the core, visualizing the agony, and empathizing. No one ever tries to know or bothers to understand what the terms inclusion and mainstreaming of people with disabilities means. Sympathy is there, but there is no empathy.”

Personally, she has faced discrimination in all areas of her life. Her husband filed for divorce and vied for sole custody of their daughter, writing “mother is incapable of looking after herself; how can she raise her daughter in such a physical state?”  Her former boss advised that she resign from her job and open up a job coaching center at her house, saying, “How can you teach students seated in a chair? How unsightly it would be!”  Another colleague denied her lecture classes making the statement, “How would you teach when no blackboard work can be done by you?”

It has been Sarmistha’s unrelenting persistence that has led her to have the life she has today, a working professional and independently living. When others said no, Sarmistha found a way, an attitude that will continue to serve her well in life. As a medical professional, she enjoys advocating on non-disability related health issues. She plans to one day again, as she did before her accident, serve the rural population, where the majority of Indians reside. That would mean moving to the countryside where no strides towards accessibility have been made. It is in this area where the water sanitation is poor, disease is prevalent, and maternal health is of great concern. Although this type of work will be taxing, she doesn’t feel that she can turn a blind eye to some of the biggest problems of her nation and feels compelled to be involved. Sarmistha says, “I will see how far my body permits me to go, but I know again, where there is a will, there is a way.” Yes, Sarmistha, you are correct; I am confident that your unrelenting spirit and drive to succeed will take you anywhere that you want to go.

If you are a mobileWOMAN living in a country other than United States, we would love to hear your story and learn what your life is like there. Please contact us at info@mobileWOMEN.org.

Columnist Amy Saffell lives in Nashville, TN and works in the music industry. She enjoys spending time with friends, concerts, and volunteering for a local youth wheelchair sports and independence group.