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“My resilience wasn’t handed to me – I’ve earned it through every struggle”

Aqsa Shaikh (25) from Mumbai was just seven years old when she started dreaming of what her future would look like. She would get acquire two degrees: after graduating college she would do her Masters. She would get a job, and then she would marry, have children….
 
But the best laid plans often go awry, to paraphrase the poet Robert Burns. It was in 2012 that, after multiple expensive tests that her family could ill afford, Aqsa was diagnosed with Friedreich’s Ataxia, a rare inherited disease that causes progressive damage to the nervous system. But there were signs of her condition even earlier. “Moments here and there forced me to see how the world perceived me differently,” she wrote (she preferred texting as speaking exhausts her).
 
She vividly remembers a class picnic before her board exams. Her teacher gently dissuaded her from entering the pool where her friends were splashing about, having the time of their lives. She was sitting on the sidelines for almost three hours when her male cousin, who was in the same class, said, “Come, I’ll lift you up and take you to one of the slides.” It was one of those broad, straight ones that can accommodate four or five at the top. She sat with a few others but while everyone else slid down she couldn’t propel herself. Her cousin returned to help her but by then the others were laughing at her. Later, a friend asked her, “Why were you behaving abnormal?” Those words hurt but also gave her clarity. That day, she told herself, “Okay, I’m not normal, and that’s okay.”
 
By the time Aqsa entered college she felt her body slowly losing independence, and simple tasks became harder. She decided to “focus on my studies no matter what”. Instead of dwelling on what she was losing, she put all her energy into her education. Once, when she outdid a friend who was excellent in studies, she said, “Haan, tera handicapped quota hai.” Although she apologised later, the comment was a reminder to Aqsa that “no matter how hard I try, some people will always see me as less”.
 
She scored a first division in the 12th board exams and chose Commerce and Accounting as her subjects. She faced difficulties in Accounting – her head would reel when tallying numbers and trying to align them in columns – but she excelled in Organisation of Commerce and Secretarial Practice. In her final year, her mother Qamrunnisa, worried she was pushing herself too hard to the detriment of her health, suggested she drop out. But Aqsa pressed on. On graduation day she had a fall which made her feet so swollen they wouldn’t fit into any footwear. “Still, I celebrated,” she recalls, “because that day wasn’t just about earning a degree; it was a testament to everything I had overcome to get there.”
 
Aqsa went on to complete her Masters in Accounting. Today, she puts her education to use by helping her sister Sumayya (26), a Chartered Accountant by profession, with GST summaries for her business. She has also been expanding her skills through online courses in writing, storytelling, and social media marketing, all of which she greatly enjoys.
 
Aqsa has always loved wearing nice clothes and makeup and pampering her skin. But then people say things like “You don’t look like a disabled person, only when you walk or use a wheelchair we can make out you have a disability.” Is there such a thing as a ‘disabled look’? she asks. “I do what I like because it makes me happy, and I don’t owe anyone an explanation for how I choose to present myself.”
 
It’s not always smooth sailing. “I won’t deny that there are moments of doubt,” she admits. Recently when she went out for lunch with friends, one of them made a remark about her voice, which made her self-conscious. “Since then, I’ve found myself speaking less, afraid of being judged,” she says. “It’s a constant push and pull between my confidence and the insecurities that creep in.”
 
Life has taught her that confidence isn’t about pretending everything is fine. “My resilience and ability to adapt are qualities that weren’t handed to me – I’ve earned them through every struggle, every fall, and every moment I chose to rise again,” she says. “These experiences have shaped me in profound ways. They’ve shown me the biases people have against those with disabilities. But I have also learnt to focus on the people who truly matter – my family and the few friends who have stood by me through everything.”