Mansi* is a young woman, whose attitude towards life is quite simply, bindaas. This thirty something jewellery designer moulds any girl’s best friend in intricate designs that reflect a refreshingly creative mind. The dancing bug caught her early and she has been dancing for as long as she can remember. The several photographs of stage performances pinned on her soft board stand testimony to her dancing ability. Mansi’s joie de vivre influences all and sundry who chance upon interacting with her…
There seems to be little wrong with this description. Wait a minute, did I say little, for that precisely is the problem. Mansi suffers from Achondroplasia, a genetic disorder that stunts growth. Yes, Mansi is what we commonly refer to as a ‘dwarf’. Achondroplasia is caused by defective matching of genes that leads to distorted body proportions. In most cases, the upper torso is developed whereas the upper and lower limbs remain largely under developed. Achondroplasics have a shorter life span of about forty years as the lack of space restricts the functioning of the heart and the lungs. In certain cases, speech might be slurred or screechy. According to endocrinologists, the available treatments are painful and most patients can ill afford them. Doctors world over are devising methods by which Achondroplasics can avail a feasible, affordable medical solution.
Yet, anybody who suffers from this dreaded disorder will tell you that the physical battle is far less painful than the social battle. Courtesy a documentary exercise in college, I had the opportunity to get a glimpse into the lives of people affected by Achondroplasia.
Manikandan* is employed as a mascot by an amusement park in Chennai, Tamilnadu. Like most other fathers, his two-year-old daughter is the apple of his eye. His professional life begins each afternoon, when he dons a costume to amuse several other tiny tots. While the rest of us fuss over the sweltering heat, Mani seems immune. It’s just another day where the mask is all that matters. After all, day after day, his grimaces go unnoticed. The children at the park greet the masked Mani with a mixed bag of emotions. While some scream with glee, some others seem hesitant to shake his hand. The parents seem far more eager, shoving their children’s palms into the mascot’s. After several cameras click away, the audience watches as Mani and his friends take to the stage. Judging by the cheers, this seems to be everybody’s favourite part of the show. As I speak to Michael, the event coordinator, he seems completely in favour of Achondroplasics working as mascots. In the lower rung of society, it’s their best shot of earning an income, he claims.
Earlier that morning we, my fellow director and I, spent time interviewing Mani’s family and neighbours. His wife does not suffer from the same disorder and she remains a few inches taller than Mani. This drew my attention to a few almost unknown facts. Achondroplasics do get married. They are also capable of producing perfectly healthy children. Interestingly, Mani also supports his aging mother who sings praises of her son’s benevolence, disillusioned by the attitude of her other ‘successful’ children, who couldn’t be bothered.
Mani’s neighbours seem nonchalant about his physical state. Having said that, we did hear the odd teasing phrase or two (courtesy the fuss made over the camera); but by and large things seemed to be at ease in this little colony of concrete shacks. The people around him vouched for Mani’s pleasant demeanour and the women were more than happy to have an in house entertainer for the children. As Mani’s wife rustled up the afternoon meal, he looked animated for the first time in the day. His eyes light up as he narrates his acting experiences for a few Kollywood films and few other television serials. Just as the afternoon sun got merciless, Mani shared with us his one ambition – to secure a government job and earn a secure income.
There might be marked differences in the quality of life that Mansi and Mani lead but it’s support and security they both seek the most. While Mansi has parents who gave her strength to discover the world, Mani has the love of his family. Mansi’s parents and sister are her best friends who see her through thick and thin. Not for a minute was she ostracized from family gatherings. It’s this progressive thinking extended by the family that has helped Mansi overcome all inhibitions and design her own dreams. Mani might not have been the beneficiary of progressive thinking but he has still managed to make something of his life. He is a doting husband and a proud father who wants to give his child a world, much better than his.
Mani and his Achondroplasic friends have taken fate in their stride as they set out to make the world laugh. You see them everywhere – an amusement park, a circus, a PR event for a children’s clothing store. Yet, none of us see through the masks. In an effort to make themselves heard, the Achondroplasics who work within the Tamil entertainment industry have formed an association. This is the first step in the right direction to fight exploitation of any kind. They seem determined to make foray into different fields where their skills can be put to use.
At the other end of the spectrum, I was shocked to discover that it’s so called elite society that wears prejudices on its sleeve. In certain cases, Achondroplasic children born to affluent parents are shunned and kept away from the glare of society. A sense of shame seems palpable, so much so that a successful doctor who happens to suffer from Achondroplasia refused us an interview. This only made me realise that even success does bring off this mask that repeated rejection has forced them to wear.
These people are far above our pity. Just like any of us, they are individuals who need love, support and encouragement to blossom forth. It’s time we, the world around, turned more sensitive to the needs of those whose lives cannot be taken for granted. After all, this is no laughing matter.
* Names have been altered to protect the individual’s privacy.