In a widely acclaimed interview with the Science Times in 2011, Stephen Hawking famously advised people with disability to focus on things which their disability does not prevent them from doing. He said, “Don’t be disabled in spirit, as well as physically”. It is a piece of profoundly powerful advice from one of the greatest thinkers ever lived. Rutuja Raorane, an 18-year-old from Kankavli, Maharashtra, India embodies this advice. This is an account of a young change-maker who has been channelling her life experiences in creating a positive impact around her. It is her story of determination and a yearning to be independent.
Rutuja Raorane while receiving Divyaratna Puraskar by Sahas Pratishthan
Rutuja was diagnosed with muscular dystrophy at the age of 3. It is an incurable genetic disease that causes loss of muscle mass and progressive weakness. Rutuja’s parents – Deepak and Shweta Raorane, did not realize the specifics until they got an expert’s opinion in Mumbai. As their first child, Rutuja’s ordeal shook them – this, however, did not stop them from providing her with the best of everything.
Rutuja was enrolled at St. Ursula High School, Waravade which was 4 kilometres from their house. Her mother wanted her to study here considering that it’s a reputed institution and she wanted her daughter to have the same experiences as any other child of her age. It included studying at an institution that did not highlight her disability.
Initially, Rutuja would hire a private auto-rickshaw for her daily commute to school but as her condition worsened, it became difficult for her to walk. Her parents were recommended a transfer to a school nearby for children who are intellectually disabled. Citing that their daughter was differently abled and intellectually non-disabled, they refused to accept the recommendation.
Rutuja is a sharp student and it reflects in her ability to express her thoughts. One of her teachers fondly recollects Rutuja’s presence, “She has been a determined student whose spirit embodied independence. She never cared for pity nor did she consider herself to be someone with special needs. Rutuja has been an incredibly positive person with a clear focus on her goals.”
As there was no ramp to support the mobility of people with disabilities, Rutuja petitioned her school to build a ramp. She also demanded that her classroom be shifted to the ground floor in an attempt to build a disabled-friendly learning environment. Understanding the sensitivity of the issue, her school built the ramp for Rutuja and assigned a ground floor class which was closest to the gate.
While many among her classmates were empathetic, few were judgemental and dismissive towards Rutuja. “Why do we have to stay put in the same classroom on the ground floor for two years? The ground floor is meant for pre-primary and primary classes. We are in the company of kids,” some of her classmates would joke. Rutuja didn’t let the inconsiderateness affect her, she stayed composed.
As she found it difficult to take notes in the class, the teacher would repeat the point for her benefit. This too didn’t go down well with some of her classmates. “Why do they react in such a manner?” Rutuja would feel bad for a moment but then she would bounce back to her spirited mode. One of her childhood friends, Tanishka shared that her friend has never been someone who would fixate on one thing. She takes everything in a jovial spirit and does not let it affect her.
Rutuja is full of energy. In free time, Rutuja would engage herself in different activities. When she was younger, she’d draw dress patterns in her sketch book and wanted to become a fashion designer. With each passing day, owing to the disease, her hand muscles became progressively weaker. Her spirit, nevertheless, has grown stronger!
As she prepared to attend Kankavli College after graduating from high school, Rutuja aspired slight independence in her way of life. Since the college was just a kilometre away, she researched about an electric wheelchair and with her parents’ support, got a new equipment that supported her dream of being an independent girl.
Rutuja (in yellow dress) with her parents Deepak and Shweta Raorane and sister Shreya
She has shaped her life experiences as an independent, positive and confident individual. This year, she has graduated with a higher secondary certificate in the Commerce stream and has secured a seat at the Brihan Maharashtra College of Commerce – a premier institution in Pune. It has been her aim to pursue higher education in Pune and now she has achieved it. When asked about her plans to move, she acknowledges that it will be a challenge, but she is determined to overcome it. Her long-term goal is to join the Maharashtra State Service Commission as bureaucratic officer.
Rutuja’s spirit to chase her dreams and not limiting herself because of a physical challenge is inspiring. She advocates for an easy learning experience for disabled children, affordable healthcare facilities and disabled-friendly infrastructure. The COVID-19 pandemic exposed systemic limitations but also highlighted the need for remote working facilities. This is particularly helpful for people like Rutuja who can continue learning, working remotely. Their physical limitations do not hamper their ability to participate in the workforce or learn remotely.
With her electric chair, Rutuja roams around the town, much to the worry of her mother. But with the chair, she’s gained freedom that she hadn’t experienced before. She takes to the road and visits the bazar and parks; the bikers and motorists make way for her.
When she’s little sad or worried, she overcomes the blues by humming Hindi film songs. When she’s annoyed with her friends, she reacts using an appropriate dialogue from these movies. Rutuja is clearly focusing on things which her disability does not prevent her from doing. Her life is an example of how supportive family, friends and society can make a person’s experiences much simpler.
This article has been written by Neeraj Shyete with inputs from Arpita Mumbark and Alka Gadgil for Charkha Features.