A Life that Shows Us What Can Happen if We Stop Treating Disabilities as Medical Conditions

Kalyanlakshmi Chitta, who was diagnosed with a degenerative eye disease at the age of nine, has overcome several hurdles to  earn her PhD in economics and now work in the banking sector.

Representative image. Credit: Thinkstock

Representative image. Credit: Thinkstock

Kalyanlakshmi Chitta is 32 years old, has a PhD in Economics from the University of Pune, has been an academic holding multiple teaching positions over the past decade and now works in the banking sector with plans to join the civil services. Despite her many achievements, Kalyani prides herself most on being an invincible langdi player when in primary school. She excelled in the arts too – when in secondary school, she trained to be a vocalist in Hindustani classical music and in college began taking creative writing lessons, educating herself in the craft of writing short stories and poetry. By the time she was studying for her doctoral degree, Kalyani was a published author, writing a collection of short stories about her life, subtitled ‘to dream big … you need vision, not sight’. This might be considered trite coming from someone else, but from Kalyani, it is a pithy summation of her life’s many experiences. Diagnosed at the age of nine with Retinitis Pigmentosa, a degenerative eye disease that causes severe visual impairment, and having lost nearly 80% of her vision, Kalyani has had a difficult path to the life she presently lives.

I’ve known her for over a decade now, and spent most of it in awe of her, as hers is a living story of the triumph of human will, if there ever was one. As we chat about her school days, she reminds me that she was always a front-bencher, a studious and well-mannered pupil, whose young mind was occupied not by the fantastical worlds children live in, but by anxiety at not being able to see the blackboard. Her father and elder sister both had the same degenerative condition – this impairment impeded her father’s career and added to the family’s financial concerns. In her early years, her family was unable to support her ambitions to do well in school, have proper school uniforms or take additional help for her disability. Even though Kalyani considered herself differently-abled and saw her life as being an instrument for social change at a rather young age, her inability to overcome her condition and the belief that this was her cross to bear alone must have been a tremendous misfortune.

She emphasises, therefore, her belief that many children, and indeed adults, would be helped if society stopped considering disability primarily as a medical condition. She insists, instead, that to treat a person with disabilities as part of a larger community of people could provide the support and the solace they so badly need. Seeing a therapist, for instance, or benefitting from the right guidance of the Poona Blind Men’s Association or the National Association for the Blind in Mumbai would have made many impossible tasks merely difficult. In Kalyani’s case, writing her own exams, without the help of a scribe, became an exercise in racing against the clock, magnifying glass in hand. She did make it to the very top of most merit lists, and earned distinctions that would be considered exemplary even for perfectly healthy students, but that was a triumph of the willingness of the spirit over the weakness of the flesh, in an effort she need not have undertaken.

Kalyani’s medical journey is a story of horrors, such as taking injections in eyes, and routinely changing doctors on hearing that her condition would not improve. She says she wishes her parents would have focused more on providing emotional and mental support she needed rather than searching for a medical solution. There might be a lesson in this for others on the precipice of this life, she reminds me. She also talks about the lack of expectations from students such as herself – how educators and parents alike often assume the worst and resign themselves to a sympathetic attitude, rather than a hopeful one. There are exceptions, of course, and her face lights up as she remembers Miss Postwala, principal of Sardar Dastur Girl’s High School, Pune and Kalyani’s history teacher, who fostered in her a love of the subject along with the promise that Kalyani could and would excel academically.

This early realisation that life could very well be charted out by possibilities and not fears, seems to have influenced her deeply. She moved from one Parsi institution to another – Nowrosjee Wadia College of Arts and Sciences, Pune, where she immediately felt a deep-rooted sense of egalitarianism – a feeling that she could come into her own not despite who she was, but precisely because of it. Kalyani initially enrolled in the sciences but had to switch to the social sciences (with economics, history and politics as her subjects) due to an inability to do lab work. Despite this, her struggles were soon rewarded with academic success.

Subsequently, Kalyani decided to study for a masters in economics at the University of Pune, where she thrived while many other students wilted under the pressure. She said she found a new affinity for economics, which she had previously considered “a set of assumptions”, but now found “theoretically more fulfilling”. Thus, the doctoral degree felt like a natural progression, and she worked on a thesis titled ‘Select WTO Agreements & India: Challenges and Opportunities’. Presenting a conference paper in Oxford gave Kalyani the boost of determination she needed to forge ahead with her PhD, a process she often found solitary.

In finding support for her morale, she was also helped greatly by her husband, whom she met, fell in love with and married while she was studying for the PhD. A college professor himself, he continued to support her career, and her ambitions, when she moved to the banking sector, taking up a job with the Union Bank of India. I prod her to talk about two of her other relationships – with faith and time. She says categorically that she believes in god, and has found faith-based devotion instrumental in carrying on with the belief that her life was less ordinary and to inspire it with purpose. Kalyani finds that her relationship with time is far more complicated as it is reminiscent of her differences from others. She says it takes her two days to begin reading a book because she has to find it, scan it in its entirety, read the table of contents with a magnifying glass, mark out what she thinks she needs to read and then, finally, begin.

We also discuss her inability to go easy on herself and not be competitive. She feels she would have found life much easier had she understood her disability better earlier. Kalyani only applied for and received a disability certificate at the age of 24, so she had already achieved a lot by then. She also finds that within the larger community of people afflicted with similar visual impairments, she is considered fortunate for receiving an education in English. She adds that women with disabilities are essentialised as ‘good people’ with people ascribing concepts such as ‘good behaviour’, ‘moral dignity’ and ‘niceness’ to them. It is too complex to ascertain, we agree, how one is to live a life that has had so many constraints placed on it that all of it begins to feel and continues to feel, no matter what has been achieved, or what there is the hope of, like a false start.

Kalyanilakshmi Chitta can be reached [email protected]