Albinism And Me: How My Genetic Condition Makes My Ethnicity Invisible | KUOW News and Information

Albinism And Me: How My Genetic Condition Makes My Ethnicity Invisible

Apr 13, 2016

I’m the black sheep in my family.

Scratch that - I’m actually more of a white sheep.

Here’s what a family photo would look like: my mom, dad, and brother, each with their own wonderful shade of brown. And then there’s me: pale, white, and blond haired.

I'm trying to understand where I fit into conversations about race and identity, because my life has been shaped by the absence of color. 

I was born with a genetic condition called albinism (you may have heard of the term albino). Basically it results in a lack of pigment in my skin, hair and eyes, so I blend easily into mainstream America.

Those of us with albinism become foreigners in our own communities

My parents emigrated to the U.S from India. They never commented on how I looked, and so home is the only place where I feel normal. It's only when I have to leave the comfort of immediate family that I get a really icky feeling. 

I feel out of place everywhere else, whether I am in India, the U.S., or on Indian-American middle ground.

In our Indian culture, fair skin tones are valued and seen as beautiful. But when I visit India, I am too fair to even fit the Indian standard of fairness. Those of us with albinism become foreigners in our own communities, and foreigners are often treated better than fellow Indians when visiting India. 

People are overly hospitable to me: they smile at me and provide extra help. They remind me that I am not one of them. When I speak in Tamil, their eyes grow wide with surprise, and some people bluntly question whether I am really Indian. 

To me, that is painful.   

Kamna, age 5, with her mom.
Credit Courtesy of Kamna Shastri

Now, when I am in the United States, I gain a lot of privileges since I pass so easily as white. I can find eyebrow pencils that are the color I need while my mom struggles to find makeup that fits her skin tone. I don’t get empty soda cans thrown at me from a passing car where the driver calls out racial slurs. Unfortunately this has happened one too many times to my friends who are people of color.

I unintentionally benefit from this privilege, but in the process, my ethnicity becomes invisible. This is especially challenging when I want to interact with other Indian Americans. People see my blond hair, but they’ll never guess that afternoon chai is the most important part of my day.  

As soon as I walk into a temple, my fists clench and my shoulders tighten. I’m afraid of being left out when the community I so want to be a part of doesn’t see me as one of their own.  

I’ve lived my whole life thinking that someday I’ll look more like my parents, that albinism will just disappear. 

My dear albinism, as much as you irk me, you have gifted me a wider view of the world.

But that’s an impossible fantasy.

I’m always going to struggle to accept myself for who I am and how I look. Images of people like Nina Davuluri and Mindy Kaling will continue to remind me of all I want but can’t have. 

Kamna and her brother, circa 2002.
Credit Courtesy of Kamna Shastri

Still, every night, when I go to bed, I look up at the ceiling and think “thank you, albinism." 

So, my dear albinism, as much as you irk me, you have gifted me a wider view of the world. 

You’ve let me experience what it is like to fit in, while also having to deal with standing out. 

You’ve taught me that first impressions are inherently judgmental. 

You’ve shown me that there is something way more important than being accepted by people who don’t know me, and that is to value the people who know me beyond the superficial.

Your most valuable lesson though, has taught me that I need to define myself on my own terms.

I’m done with letting my complexion, and what people say about it, decide who I am, and where I belong in the world.

RadioActive Youth Media is KUOW's program for youth age 16 to 20ish. Listen to RadioActive stories, subscribe to the RadioActive podcast and stay in touch on Facebook and Twitter.