Deepa Narasimhan’s story proves that disability exists only in the mind of the beholder

A 6-month old Deepa Narasimhan was diagnosed with Spinal Muscular Atrophy. Today, she heads Diversity and Inclusion Initiatives at a multinational company.


deepa work

As a society, we have been conditioned to think of beauty and sexual attractiveness in dichotomous ways. We are trained to prefer certain body types, appreciate specific stereotypes of embodied beauty, and look for excellence in the performance of certain gender roles.

The differently abled, almost always fall outside the commonly accepted definition of beautiful, social, sexual beings. Our own limited ability to look past their bodies and their physical challenges means we are often the ones narrowing the horizons of the differently abled. For women, especially in developing countries, the experience of being differently abled is further intensified by their gender.

In our attempt to look beyond the limited, culturally structured ideas of beauty we are surrounded by and to understand what makes for a truly broad and diverse understanding of beauty in ways that neither patronizing nor exclusionary, we spoke to Deepa Narasimhan about what being beautiful means to her and what makes her feel beautiful.

Deepa works at multinational corporation EMC, where she heads the Diversity and Inclusion Initiatives for EMC APJ Centres of Excellence. She joined the company as a communications specialist, managing the overall Internal Communications Strategy, Marketing Campaigns, Brand Activation, Digital Marketing, Innovation programs and Corporate Events. She has been instrumental in launching the EMC DERG (Disability Empowerment Resource Group) India Network to create an environment of equality in the workplace. She is a proactive accessibility evangelist, actively advocates disability rights and gender equity in various capacities, and is a partner at KickStart and Wheels of Change, an accessible cab service in Bangalore. At the age of 6 months, Deepa was diagnosed with Spinal Muscular Atrophy, a condition that has progressively weakened her muscles, restricted her mobility, and left her with strength only in her wrists and fingers.

Deepa 2

On her condition and what growing up was like

“At the age of 1, what was earlier diagnosed as ‘myopathy’ developed into muscular atrophy. I began receiving physiotherapy at age 2 to which I responded well, learning to stand as I slowly gained strength in my legs. I have a few pictures of that time. But, the progress I’d made did not last long. As I grew, my muscles developed too, but they were not getting any stronger or getting enough energy. This meant that I completely stopped walking and used my knees to move around. My family has been extremely supportive of me, carrying me to school till I reached Class 7. Once in high school, I was compelled to drop out because the school could not accommodate me, neither was it designed to be accessible to me nor were any arrangements made to accommodate my special needs. So, the decision to drop out of school seemed only natural and convenient at the time. From the age of 13, I stopped venturing outside and remained within the four walls of home for the next 15 years.”

On adolescence

“Adolescence was an especially difficult time for me and I was a very different person back then. I remember being constantly depressed and confused because I was experiencing the physiological and emotional changes characteristic of that age but I could not do things like the other adolescents. I was taken outside often, but nothing that my family or anyone else did could satisfy me and the more they did, the more I desired. So, those fifteen years I spent being unhappy, spreading the melancholia to those around me, and constantly trying to escape from something I could not identify.”

Change came in the form of a new friend

“Sunshine actually came in the form of a computer when I was 14. This was the one, single thing that changed my life. It opened up a whole new world for me – a world where my condition, my lack of mobility became non-issues. With my computer, I was able to, for a few hours every day, escape the four walls and through chats, hours of reading and understanding the world, I was able to go wherever I wanted and do everything I couldn’t otherwise do. I learnt about everything, from my medical condition to sex education and digital marketing from the Internet, my friend and constant companion as I grew emotionally and physically from adolescence into adulthood.

The Internet dramatically changed my approach to life and my experience of it by bringing the world to my fingertips, allowing me to discover myself and a whole new set of abilities I had that went unrecognized in a world where physical abilities dominate. I spent hours on the Internet and I never again complained of boredom or loneliness. It brought me freedom.”

Deepa Narasimhan

Deepa spoke to Lakshmi Rebecca and Kalki Koechlin on dating and finding love. Courtesy: Chai with Lakshmi episode, Would you Date a Woman with a Disability?

Making way for a long-lasting transformation

“Inspired by my siblings, I resumed my studies, teaching myself most subjects and giving the necessary exams. With the help of the web, I became aware of my own body. The conversations I was having with people from across the world with conditions similar to mine made me want to push the limits of my body and try to walk again. I resumed my physiotherapy and got myself a pair of calipers. With one year of very hard work, I learned to stand up again, something I had not done in 15 years! That reaffirmed my conviction that with exercise and belief in myself, I could overcome my physical challenges. But, like an echo of an earlier time, that sense of euphoria too was not to be. Walking, even a few steps, standing still even, became unbearably hard. I soon realized that I was fighting something much bigger than my body, my mind, my will power. Something that was bigger than me. With this, I began to accept my condition. I accepted me the way I was and decided to accept the fact that not much will change with respect to my physical ability. I let go of the pressure I had been putting on myself all those years to be and look a certain way or do things like others. I stopped trying to be something I was not.

Once I accepted my condition, I noticed that people around me, my family included, eased up and accepted me as well. Once we stopped reaching out for things beyond our grasp, we had more room to creatively explore ways to grow and do things with what we had, with my condition, with my body as it is.”

On being always motivated

“I always look back to where I began and that keeps me motivated to do more. When I see my journey, the challenges and how I overcame them, over and over again, I know I can do more. My job is a full time one that enables me to travel, be amongst people and do the things I am passionate about. I kickstarted the unique Profound Disability Internship program at EMC for people with conditions similar to or more severe than mine, I get to mentor these young and enthusiastic people. This and the fact that the program is being emulated by many corporates really motivates me. 

Work has opened up opportunities to travel abroad. While it is challenging, I enjoy it and feel that by being seen out and about, I can help sensitize people about my condition. When people like me travel, not only do we become more visible, but conversations about inclusion enter the mainstream. This requires services and spaces to think more urgently and innovatively about accessibility.

I have proven that I can do anything given the opportunity and there is no need for people to worry about and for me. This keeps me always pushing to see how others can become more confident in me.”

Deepa travel

On beauty and what makes her feel beautiful

“I have never thought about this actually. Like most other women, I like taking care of myself, keeping abreast with the latest fashion trends, changing my style regularly, cutting and colouring my hair differently and even getting tattoos and piercings done. I keep myself fit by watching my diet and nutrition especially since I have low physical activity. As I grow older, I feel more beautiful just by being a woman.

But, “beauty” in the way it is used today, is a very restrictive term that does not allow us to appreciate it in all its diverse manifestations. By repeatedly feeding us images of a certain kind, society has confined our ability to explore it freely or redefine it. We aspire to that standard, look for that same standard in our partners and squeeze ourselves to fit into these narrow spaces so we become visible to others.  Does that make me ‘not beautiful’? To be truly beautiful is to be yourself, not struggling to alter your looks, your body or your personality to meet others’ standards.”

We need to transcend barriers of the body and physical ability and become more creative in the way we define and recognize beauty. To ‘be beautiful’, one is required by society to dress up and portray oneself in ways that are pleasing and acceptable to others. But, isn’t that terribly constraining? For example, we have been culturally conditioned to see women or wives in a certain, fixed way. How will people react to a bride in a wheelchair? Or up on a matrimonial site?

Globally, there has been some inspiring work in the fashion industry that have gone beyond standard notions of beauty, but most campaigns continue to reflect traditional standards of beauty. With the use of differently abled models, the message being sent is that beauty can be seen as it is rather than as something that needs to be hidden, masked, or made up to appeal to mainstream sensibilities. Differently abled women, especially, have no outlet to express their sexuality as we are hardly seen, by society and the fashion industry, as sexual beings. It is time we stop aspiring to conventional notions of beauty as something desirable because we are all, each one of us, beautiful in our own ways.

All images courtesy Deepa Narasimhan. 

 

The Alternative’s #mykindofbeautiful campaign is an attempt to look beyond conventional notions of beauty and recognize and celebrate it in all its diverse forms – to explore new ideas, listen to unheard voices and look for beauty in hidden places. Find more articles from the series here.
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