This is the fourth and final installment in our ‘Month of Blind Women,’ a series of essays by women who are blind or have low vision presented by LightHouse Interpoint, the new literary supplement from LightHouse for the Blind in San Francisco and cross-posted at The Toast. To read all of the essays from Interpoint, click here.
It was way back in the seventh grade when, during lunch hour at school, a little girl told her companion not to sit beside me in the cafeteria. “She has cancer, and you might get it too if you sit so close to her,” was the whispered but audible warning. I don’t know what was more shocking: that the child believed cancer to be contagious, or that she’d somehow assumed I was afflicted. Before I could decide how to respond, the duo had skittered further down the table.
My earliest memories of school are punctuated by this type of scene, and by seventh grade I was already quite immune to the comments about my appearance. A bunch of boys in my class called me ‘Casper the Friendly Ghost.’ They sniggered when I wore a hat and tinted glasses to protect my skin and eyes from the sunlight. I was used to being confronted with blunt and awkward questions, ranging from the crude (“Why are you so white?”) to the intrusive (“Are you adopted?”) and even the downright amusing (“Were you born in America?” — as if place of birth can be the sole determinant of skin color).
That was in Kenya, where I grew up, though I was born in India. I attended a predominantly South Asian school, where in the sea of brown skin and dark hair, I stood out as the pale, blond oddball. At the time, I was too timid to stand up for myself. I ignored the questions. Two decades later, I wonder if I should have been bolder, if in the face of these ubiquitous interrogations, I could have served up the plain truth:
“It’s called albinism. And no – it’s not contagious.”
Doctors have always told me that I see quite well in relation to other people with albinism – low vision is common among those in my situation – but I still have my moments of frustration. Because my eyes are very sensitive to light, it becomes harder to function in the bright sunshine that is characteristic of the weather in India, even when wearing dark glasses. Add to that an utterly chaotic traffic situation, and crossing the street becomes disproportionately stressful, time-consuming, and at times downright frightening. There have been instances when I’ve actually hailed an auto rickshaw at busy intersections simply to get to the other side of the road.
Nonetheless, I walk the streets like everyone else. Growing up, I used to feel disheartened about my eyesight, but I’ve learned to appreciate that despite this challenge I can still function independently. In fact, my eyesight is often the last thing on my mind as I navigate the streets of Ahmedabad, living the life of a foreigner in the town I was born.
Albinism is not a disease, but an inherited genetic trait like freckles, dimples, or left-handedness. Some people with albinism have little to no pigmentation in their skin, hair, and eyes, but everyone is different. My eyes have traces of color – they’re hazel – and my hair, which started off light blond, has deepened in color over the years. My skin is pale, so pale that the veins in my arms and legs figure rather prominently, and even the lightest shade of makeup doesn’t blend on my face. My complexion is, in fact, lighter than most Caucasian skin tones, but this giveaway has not kept me from being mistaken for white. This is true especially in India, where there is to date a certain sense of fascination surrounding fair skin. When I started college back in my hometown of Ahmedabad, my classmates assumed I was an exchange student from Europe and were disbelieving when I explained that I am Indian by birth, born in this very city to a fairly conventional Muslim family.
The mention of my faith often brings in another layer of complexity and I have often been asked if I converted to Islam — because whoever heard of a fair-skinned, blond-haired Muslim woman in jeans? When I was working at a school two years ago, a fellow teacher was pleasantly surprised to hear me speak fluent Hindi, and commented that I had picked it up “quite well and rather fast.”
Other times, having albinism puts me in a rare if not non-existent class: I am a native South Asian Muslim with “white privilege.” One might not think that this applies in a predominantly non-Caucasian country like India, but my daily life is sprinkled with incidents where, shoulder-to-shoulder with my family, friends, and peers, I am afforded a higher status simply because of my appearance. Like a spy in my own homeland, I slip past the racial barriers that tightly bind my loved ones to the drawbacks of their own culture. When I enter shops or restaurants in a group, I am greeted first, and addressed as “madam.” I am exclusively spoken to in English, and generally paid special attention. Shopping in the sprawling open-air bazaars, where bargaining is the norm, vendors snub other customers to attend to me first, no doubt assuming that I will spend more money because I am assumed to be a foreign tourist and hence wealthier than the average Indian. Prices quoted to me are the “tourist rates,” typically more than double the actual cost.
The same is true when I use auto-rickshaws, which are the primary means of public transport here. As I emerge from whatever place I’m visiting – a mall, restaurant, office or home building – the first thing I do regardless of season or time is cover up my hair and face with the scarf I always carry around. This is to avoid an overwhelming onslaught of “madam, auto?” the minute I reach the road. On the rare occasion that I don’t have my scarf with me, I rely on speaking Hindi to cover up my supposed “foreignness”:
“Aapko Hindi aati hai! Kahan se hai?” (You can speak Hindi! Where are you from?)
“Haan, mein yahan se hi hun.” (Yes, I’m Indian.)
“Dikhte nahi.” (You don’t look it.)
I don’t know how to respond to this, so I fall silent, and the rest of the ride passes uneventfully save for the driver stealing curious glances at me in the rearview mirror. If it’s my lucky day, that’s usually the end of the awkwardness — but sometimes, when I reach my destination and ask how much I need to pay, the driver quotes more than what it should be. When I argue, I am told: “You’re a foreigner and you’re fighting for such a small amount! It’s not much, madam.”
“I told you, I’m not a foreigner. And even if I was, why should you overcharge? And if it’s a small amount, why are you asking for it?” We go back and forth; I hand him what I feel is fair, or I overpay. Either way I storm off in a huff.
At museums and monuments, I am often the main attraction. Strangers ask me to pose for a photo with them so that they can later show their family and friends that they met a “firangi.” This is the colloquial Hindi term for “foreigner,” which in turn almost exclusively refers to white-skinned tourists. The word often has negative connotations attached to it, and is used primarily in an attempt to “otherize.” Because I am assumed ignorant of the language, it’s not uncommon to hear strangers contemplate my origins right in front of me, not to mention the lewd comments men make when they think a firangi woman can’t understand.
Because of this, I find respite in the Muslim customs of my city. The scarf I wear around my head to keep from getting sunburnt is much like the hijab that many Muslim women wear. Such attire is quite popular in Ahmedabad, as many women use a head wrap as protection against the damaging effects of harsh sunlight and high levels of air pollution. In my case, I keep the scarf on, even after sundown, to hide my appearance and avoid the unwanted attention I tend to attract. On the rare occasion that I am outdoors without a scarf, I feel strangely exposed and anxious, a situation I suppose I wouldn’t experience in a country with a more sizeable white or mixed-race population.
Despite the fortitude I have gained over the years and the support I have found on social media, I still find it difficult to handle a lot of far-flung relatives or random strangers who assume that I just have an extreme form of vitiligo and can hence can be treated. In innumerable instances, people whom I have just met take the liberty of suggesting doctors or shamans I could visit to be “cured” of my “condition.” The same is true with regard to my visual impairment — family and friends sometimes find it difficult to grasp that despite the immense advancement in medical science today, there is still no prescription or surgery that can significantly improve my shortsightedness or correct my nystagmus, a rapid involuntary movement of my eyes. These well-meaning individuals don’t see that I’ve found my own solutions, and can accomplish most tasks on my own, from crossing the street to clipping my toenails.
For all the fallacious beliefs in my own country, there are places where it is often worse. Many people with albinism face intense stigma and are denied jobs, homes, and other opportunities all over the world. In parts of Africa, particularly in Tanzania, albinism is linked to black magic, and people with the condition are persecuted and even murdered for their “magical body parts.” The negative portrayal of albinism in popular culture is all the more disheartening. The stereotypical “evil albino” characters featured in works such as The Da Vinci Code and The Matrix Reloaded only reinforce or further propagate the stigma and social prejudice faced by people living with albinism.
We may go on about how “looks don’t matter,” but I vouch for the fact that they do. When I am approached for photographs at tourist sites or asked for proof of identity just because the color of my skin contradicts my claim of being Indian, it sensitizes me to how much importance we attach to appearances, many times unconsciously. Often, the way we respond to people is based on our vague notions of who or what they should look like. Being at the receiving end of such behavior has led me to better appreciate the intersectional identities that most of us embody.
While checking into a hotel with a group of friends recently, the manager promptly labeled me a foreigner and asked for my passport, to which my best friend countered: “She’s not a foreigner and you can’t make such assumptions without asking.” The manager reddened and looked away, mumbling an apology, while I smiled, heartened. The incident reiterated what I am finally beginning to understand: that although there will always be people who tell me I don’t look Indian or Muslim or even like a person with albinism, what they are really saying is that I don’t fit their narrow definition of all these words – in other words, their dictionary is outdated.
Mehak Siddiqui is an author living in India, She is currently writing her first novel, which draws heavily from her experiences living and growing up with albinism.