The irrepressible special child

Endearing spirit

Zeenat Ara has not seen Margharita With a Straw or even heard of it. But she speaks a lot like Laila from the film. She is far more severely challenged than Laila, and her hopes much more far reaching. Dressed in a green and pink Rajasthani skirt and blouse, with matching heavy jewellery, kohled eyes and dark pink lips, the 25-year-old comes across as a diva,who made her entry in a wheelchair.

From the accompanying photo of Ara, one can see that she is literally lying on a specially designed wheelchair, on which she rests in a half sleeping position. She was born with SMA (spinal muscular atrophy). This is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe, it is progressive and also a degenerative disease. Zeenat Ara cannot hold a pen, but can move her fingers on the laptop, and speak vociferously about herself, mildly choking on the long and touching narrative.

“I am a storyteller, I have so many stories spurting in my mind all the time. If I find someone to talk to, I can’t stop,” Ara gleefully explains her loquacity.“I have insecurities. Like any other girl I would want a man to look after me. But I don’t think I can do much with him,” Ara says jokingly. Her conversation revolves around her ‘cute’ doctor, her inspiring little brother and her sister whom she ‘forbids to look better’ than her.

“Whenever we (Ara and her sister) go out, I tell her to wear the shabbiest dress she has, and she obeys,” Ara tells Metrolife candidly.

Her recently published autobiography, The Real Fighter, provides a very narrow view of her vivacious character. The book is a 118 page rudimentary script (more like a diary entry) of acknowledging and appreciating her life and speaking to ‘her people’ about how she feels about being confined to a wheelchair since childhood. The book doesn’t talk of her domineering personality, sense of humour or her maturity in understanding her physical condition.

“She is unpitiable, she would never accept charity. So, when she wrote the book, I made sure it is published,” says Vandana Sharma, her teacher and mentor at Mata Bhagwanti Chadha Niketan (a charitable school for children with special needs), where Ara completed her high school. “She wanted to be a fashion designer, but because of her ‘condition’ we had to sensitise her that she should not be hopeful about something that is not plausible for someone like her,” says Sharma.

“Autobiography toh famous logon ki hoti hai,” says Ara. She is well aware that The Real Fighter is a ‘replacement’ for her passion (fashion designing), but admits that it has helped her communicate with her family and friends. She expresses her disregard for fame and  is concerned only about being able to ‘let out’ what has been suppressed within her for years. “I didn’t expect to be famous, I was happiest to know that my father read it,” she says.

Without any expression on her face, Ara says, “Most of the time, I put on a happy face, but at times I am pulled down by the darkness in my heart.”

She recalls an incident, when she overheard her father talking to a friend about her sister’s marriage, saying, “ek hi beti hai toh itna toh karna hi padega.” “I told him to repeat the statement to me,” Ara tells Metrolife. Writing, it seems has proved to be a good channel for Ara to let out negative emotions.

“I always thought that my parents and family don’t know so many things about what I ‘really’ feel,” she says, emphasising on the word ‘really’.

In spite of being on the wheelchair since childhood, Ara has an irrepressible energy inside her. “I have everything that I want and ab shaadi toh karni hi hai,” she says, joking again.

The not-so-well written endearing struggles may not be very impressive but her spirit is. And it becomes harder to sympathise with the bubbly Ara when one meets her. She does not have an ounce of sadness for her condition or life in general and is already gearing to write another book.