When I was little, I fancied myself as the fair-skinned, blond-haired heroines of my favorite books and movies. But it was hard to ignore the painful reality that while my idols were always pretty and popular, I felt ugly and rejected. They were confident and admired whereas I was just a timid recluse who stood out for all the wrong reasons, and attracted awkward questions from my peers: Why are you so white? What disease do you have? What's wrong with your eyes?
I found the attention humiliating, always choosing to remain silent over acknowledging my condition, a tendency that continued well into my early twenties. I grew up wondering, why can't I read a book about someone with albinism? Why isn't there a movie where the hero or heroine has albinism and is not evil or magical but just regular or "normal"?
Meet Mehak Siddiqui
Finding an identity
"I've realized that who you are is not something that can be checked in a box"
Normal. I put that word in quotes because I feel it is completely subjective, a concept that varies vastly across individuals, communities and cultures. We inhabit such a diverse world yet difference is so scantily represented in mainstream popular culture. It is this sad realization that somewhat subconsciously planted the seed of my dream to write novels featuring protagonists with albinism. I am deep into penning my first novel, which is largely autobiographical but not entirely so.
My writing has been the driving force behind my recent change in attitude toward my condition. I have finally gathered the courage to be more forthcoming and accepting about my identity as a person with albinism, along with all the other identities that define me. I've realized that who you are is not something that can be checked in a box on the umpteen forms we spend our lives filling out, but rather, it's a complex amalgamation of the traits and realities that simultaneously mark us as unique individuals and connect us to others.
I feel very fortunate to not have faced the kind of discrimination that a lot of people with albinism encounter. My South Asian ethnicity makes my hair color a dark blond rather than white and I most often get mistaken for being Caucasian. Most of the time, it is quite amusing, but there are moments when it becomes frustrating to be treated like an outsider in one's own country. I live in India, and have had random locals at tourist sites ask to take photographs with me because they think I'm exotic; and security guards demand that I pay the exorbitant entry fee meant for foreigners.
In other instances, I can't help the occasional twinge of envy when I observe others and notice how empowering, useful, and helpful it is to have regular vision. But I remind myself that even with my poor eyesight, I function well enough, which is surely something to be grateful for. Moreover, I have an amazing support network of family and friends who always know when I need help, even without me asking. And for that, I feel truly blessed.