At the ground floor hall of an organization in Mumbai one dreary evening, a conference on disability is winding up. Many of its participants, flown in from all over India, are celebrated survivors of disabilities and advocate themselves. They’re hobbling away, giving goodbyes with feeble but mirthful handshakes. One of the lasts to leave her seat is Jeeja Ghosh, her small frame clad in a dull orange salwar; after having scribbled something. One glance at her, and we disbelieve that this face of cerebral palsy in India is 42 years old. Must Google, we make a note.
“I was born with it, I don’t know how it feels living without it… but I’m happy!” Jeeja begins, her speech halting and eye-contact wavering. (We’d been asked if we’ll need assistance in understanding her, but going by just the first minute, we’re totally in-sync with her.) Jeeja has been living with cerebral palsy, an umbrella term for a group of movement disorders caused by damage to the brain before, during or just after birth. It is characterised by weak joints, speech/vision/hearing problems and loss of co-ordination among other things. Though it affects roughly 2-2.5 children per 1,000 in India, we are already home to 25 lakh people with it, most of them ‘bearing with it’ rather than ‘living despite it’. Jeeja belongs to the latter minority.
While she begins telling us of her schooling and Masters in Social Work from Delhi University, we get our first surprise – the woman is a Leeds University degree holder. “Educational qualification was only a superficial reason. I wanted to take up the challenge of seeing new places and living by my own in a foreign country,” she tells us. And even though the West’s ‘highly individualistic’ culture irked her, she returned home freer and more confident. As she’s fidgeting with her cellphone, she’s told not to leave for her flight back to Kolkata, as it has been delayed. We’re only happy.
A few weeks ago, just as she’d got on a flight from Kolkata, she had been told the opposite – to leave. The SpiceJet pilot, perhaps judging only by her physical state, deplaned her, leading to a furore in the media. Incidentally, Jeeja had approached the Supreme Court for compensation and its reaction was expected the day we met her. “I had a torrid few hours but in a way, this brought the issue of ‘attitudes’ towards the disabled on the front page. After the episode, I see more people coming forward and taking an initiative to change the system or hit back at insensitivity,” she admits. We later learnt that SC had served a notice to the erring carrier.
Having worked with the Indian Institute of Cerebral Palsy for more than a decade, Jeeja recalls that teaching and advocacy naturally happened to her. “I did not resist it, nor do I enjoy it. it’s just a part of my life.” That said, she has been striving to better the lives of scores of disabled people in India, a country biased towards just the visually and orthopedically challenged. Ask her if this annoys her and she agrees, “But this (the lack of attention to disabilities such as cerebral palsy) gives an impetus to our advocacy efforts.” Her institute, The Indian Institute of Cerebral Palsy Kolkata, every day, strives for infrastructural, social and most importantly attitudinal changes in society to make the disabled feel included among the majority.
To assume that Jeeja leads a mundane work-dominated life would be a folly. Albeit many of her friends are married, she does catch up with a few (and their children) every now and then, besides going for walks to the beach and shopping, ‘not in malls’ though, she points out. The unnecessary sympathy and untoward attitude of those around her, especially in her Kolkata locality, isn’t likeable but she has evolved enough to stop caring. Just an attentive, warm greeting or a silly joke or chat about her favourite actor Hrithik Roshan can be enough to make her happy, we figure. Sure this would be the case with most differently-abled persons, who strive for inclusion.
As Jeeja shuffles measuredly, we figure it’s time for her to pack. But we don’t miss shooting a curiosity toward her: what flight is she taking? “I’m never flying SpiceJet again!” she exclaims, adding the name of another carrier. What’s more, the episode has added one more thing to her to-pack lists every time she travels, a printout of travel and other laws as regards the disabled laid down in the constitution. “It’s false armour. But it gives me a sense of confidence,” she tells us.
We return and Google her name, to confirm if her age matches her 20-something looks, but instead hit upon lots of stories on her bravado for others’ cause. Jeeja can’t be one of us, after all, simply because she’s way more motivated than most of us!
(An initiative of Trinayani, a
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