Living a full life with a disability should be the norm and not the unexpected. Yet in some countries, many people with disabilities need to fight for their right to a life of dreams and aspirations. In these countries, it takes aspirational role models to bridge this gap – people with disabilities who have been told ‘they can’t’, when of course, they can.
Scholar, author, and Indian human rights activist, Malini Chib, aged 48, is one such role model. Malini knows no boundaries. She inspires others with her achievements, and her ability to live a rich life with cerebral palsy. Malini’s known no different, partly because of her family’s accepting and encouraging attitude towards her CP, which enabled her to grow up expecting nothing less than the right to live her life as she chooses.
Author of autobiography One Little Finger, Malini today is a champion for people with disabilities – for the right to live an ordinary contributing life, and experience full inclusion in society.
Fighting for a contributing life
Following a traumatic birth, Malini was not expected to survive. “The umbilical cord was stuck around my neck and for a few seconds I couldn’t breathe,” says Malini. “Those few seconds were to change every other second in my life.” Although Malini proved the doctors wrong, before long it was obvious that this traumatic start to life had taken its toll. “My parents moved from one doctor to another and saw dozens of specialists trying to find a diagnosis for me,” says Malini. “Every doctor in India said to just keep me clothed and fed and I would remain a vegetable all my life.”
But Malini’s mother knew from her smile and her eyes that Malini was bright, so the family left India for England in a quest for the support that wasn’t available in India. Living with a close extended family created a perfect environment for Malini to grow and develop. “I was given lots of love and protection by my family. Being an only child I got a great deal of attention from my Mum and aunt,” remembers Malini. “They were eager for me to succeed intellectually. I was stimulated constantly.”
“My mother pushed me a great deal and I followed her unquestioningly,” says Malini. “I was treated like any other person.”
When it came to fighting for the rights and recognition of the disabled in India, Malini’s earliest role model was her mother, Dr Mithu Alur. Through identifying the lack of assistance and support in India for people like her daughter, Dr Alur became an early pioneer in the care and education of people living in India with neuromuscular and developmental disabilities. When their family returned to live in India, no school accepted Malini as a pupil, so her mother established The Centre for Special Education so that Malini could go to school. As the subsequent founding chairperson of the Spastic Society of India, Dr Alur has created a framework for the acceptance and inclusion of people with disabilities in India.
Today, and now known as ADAPT (Able Disable All People Together), independent spastic societies exist in 16 states in India to help bridge this gap at the local level.
Finding a voice
Inclusion in society has always been a fierce passion for Malini, most notably in the differences in attitudes towards disability in India when compared to England.
Today Malini has an electric wheelchair, a Lightwriter through which she communicates, and has taught herself to type with one finger. Online communities, social media, texting and email have also opened up new channels for connection, which Malini uses with ease and enthusiasm. She holds a BA from St Xavier’s College in Mumbai and a Masters degree in Gender Studies from the University of London, with a specific focus on feminism and women with disabilities. Malini describes her studies as ”emotionally empowering”, enabling her to accept her identity as a disabled woman and to finally be “proud of being one”.
This passion has not gone unnoticed. In 2011, the Indian Ministry of Social Justice and Empowerment awarded Malini the National Award for the Empowerment of Persons with Disabilities.
Building a diverse career
Malini has enjoyed a varied career over the years, albeit while still experiencing physical challenges that her colleagues don’t encounter. She has felt most accepted when she hasn’t been marginalised or treated differently in her roles. Today Malini works as an event manager at a bookstore in Mumbai, while carrying on her activism work to empower disabled people in India.
Not one to rest, Malini has also developed a passion for writing, resulting in her autobiography One Little Finger which was published in 2010, and provides an honest voice for those who don’t have one – who, because of their disability, are unable to express their experiences on life with a disability. Writing the 50,000-word book over the course of two years, with just one finger, hints at the sheer grit and determination that lies within Malini.
“Inside I feel normal but my body disabled me,” says Malini. “Writing this was a real achievement. Despite my garbled speech I have a voice and an identity.”
But Malini’s book is not one of disadvantage. “I was brought up with a great deal of function and opportunity,” suggests Malini. “My book isn’t about the stereotypical image of disability being about pain and tragedy.”
Malini’s book has inspired an award-winning film Margarita with a Straw, with director Shonali Bose echoing Malini’s quest. “The idea is to get past the disability and treat people with disabilities normally.”
If inclusion is Malini’s personal crusade then she has achieved this in more ways than she may even realise. Through One Little Finger and Margarita with a Straw, Malini has been able to include those without disabilities in the world of those that do have a disability. As the saying goes, ‘You can’t really understand another person’s experience until you’ve walked a mile in their shoes’.
Through her book and activism, Malini Chib has shown us what it’s like to live her life and, in doing so, she has provided a poignant lesson in understanding – and the gift of perspective.