BROOKE FOX - Albinism 101

ALL ABOUT ALBINISM

Welcome to my little collection of factoids and life-moments while living with albinism, a rare genetic trait which causes legal blindness and a lack of pigment in the hair, skin and eyes.

Photo by Leonard Smith

THE X'S AND Y'S: Quick genetic facts about albinism

Approximately 1 in 17,000 people have albinism

The birth rate is even fewer around the world. For example, in Russia it’s almost 1 in 100,000.

There are a few different types of albinism. I have Oculocutaneous Albinism, which is passed down by a recessive gene. Both my parents carry the albinism recessive gene, which had been passed down unknowingly by their families for generations.

Even though both my parents have the gene, it was only a 1 in 4 chance they would have a child with albinism.

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March 23rd, 2006: Watch Brooke's live interview on Albinism and the Da Vinci Code for "Your World" with Neil Cavuto on the Fox News Network

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ALBINISM LINKS AND RESOURCES

WWW.ALBINISM.ORG

The official site of NOAH, the National Organization for People with Albinism and Hypopigmentation

WWW.POSITIVEEXPOSURE.ORG

NYC fashion photographer Rick Guidotti explores the beauty of albinism by interviewing and photographing people around the world. His collections have ended up in Life Magazine and on display at the Smithsonian in DC

www.lunaeterna.net/popcult/

Albinism in popular culture. I love this site. Lots of cool artwork and historical accounts of albinism.

WWW.SKINEMA.COM

An interesting look into entertainment through various skin and genetic conditions.

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Here is a personal account of my experiences with legal blindness and the social aspects of albinism.

Also, you can read my published article "The Art Of Albinism" all about how my music and disability interact.

MY UNIQUE LIFE WITH ALBINISM

I have to say, I love my paleness! It's decidedly different. The only real downside of albinism: Legal Blindness. Basically, the loss of pigment in my eyes kept my retinas from fully forming at birth which in turn led to extreme nearsightedness and sensitivity to light. As a result, I can't see things far away, and in super-bright light, but get something close enough to me and I'm good to go.

Thank God for the subway and city busses in NYC! Trust me, you would NOT want me behind the wheel! Besides the loss of not being able to drive a car, there are more subtle things that many people may not think about as daily hurdles for me. But, I have a few little tricks I've fine tuned over the years. For instance, when trying to "read people" I rely a lot on verbal cues. Also, I memorize information as much as I can, addresses, streets, menus. I guess a lot. Sometimes, I guess wrong. Like the day in junior high when I bumped into a trash can in front of all my friends and not looking up, I said “Excuse Me” :-)

Like many kids, when I was in grade school, I was targeted, called “Four Eyes”, “Grandma” and definitely took my fair share of dodge balls straight in the gut. These days, people have more subtle ways of showing their curiosity. They stop me all the time and ask, “What’s your heritage?” or “Are you Scandinavian?” Sometimes, “Are you albino?” Inquiring minds want to know! :-) I have gotten stopped everywhere: the subway, street corners. The next question they ask me is usually “How come you don’t have red eyes?” Complete strangers are suddenly probing into my family history, but, I figure how can I expect them to be experts on genetic disorders? My experiences on the stage come in handy in those situations. Suddenly I am in the spotlight in a way.

As a child, music became a life support for me early on. I started performing young (age 5), and I gained confidence in it as something I could do well. Songwriting gave me another way to develop my own voice and deal with life through journaling, which I think is an invaluable thing. Eventually, I came to a fork in the road: Opera Performance or Songwriting. I chose to study Songwriting at Berklee College of Music. It's the only place to get an actual degree in the craft of songwriting and it happened to be in Boston. So, I moved cross-country at 17. In the "big city" I got around by crossing busy streets using sound cues. Of course, coming from California, I was not really prepared for a full on east coast winter. I learned that yes, one did have to wear those silly wool hats and that falling flat on your face in the middle of an icy city intersection happens to everyone. I did well at Berklee, graduated with honors and was awarded a Songwriting Achievement Award.

Upon graduation, I relocated to Nashville, TN to be a part of the songwriting movement there. Arriving in Nashville, where they drive to get their mail, was one of the most sobering moments in my life and became the first real test of my resolve. I realized, I am my own transportation. I walked everywhere in Nashville. A stranger stopped me at the grocery one day proclaiming, “I know you! You’re that girl that walks everywhere!” Shortly after I moved there, I tried to hail a cab. After some time, I was finally picked up and the driver snickered, “Where are you from? New York? No one hails a cab in Nashville”

My career had begun to take shape there. I recorded my first CD, got a band together, had some solid mentions in the press and played a ton of shows. I ended up working in a recording studio as an assistant for a year, where I met all kinds of great people in the trenches of the music biz. But even though I was making great strides professionally, my soul was struggling in Nashville from day one. My friends had done so much for me but were getting tired of driving me everywhere. Once, I caught a ride home with a complete stranger from one of my shows when my friend could not get out of work to come get me. One random morning I had sort of a meltdown when the cab that usually picked me up to take me to the studio was a no show. By the time the dispatcher had sent another, I was two hours late for work. I felt like life was out of my control there and I was having trouble staying “up” about it. I began to ask myself: ”why Nashville?” Sure, I could live that way, but why put myself through that? I began to think about leaving.

friend of mine in NYC, knowing I was upset, called me declaring his roommate was leaving and “Why don’t you just pack up your stuff and move here?” I was determined to not make a life decision based on my albinism. It became an issue of pride versus my quality of life. I finally decided: I would not let Nashville keep me down. So, I made the move to New York, which can seem like the most daunting city to even normally sighted people, but it was nothing but freedom for me. The fog lifted. My life improved about 1000%. I could run my own errands – all by myself! I’d never been so happy to pick up my own dry cleaning in my life! I began temping in midtown by day and playing shows downtown at night.

After a few years in NYC, I am enjoying some professional success here. In addition to touring regionally with my band, I also play at Albinism and Blindness conferences around the country, connecting with all kinds of amazing people who happen to have a disability. Albinism continues to shape my world and surprise even me every day.

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Thank you for reading! Let me know your thoughts at info@BrookeFox.com.

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LECTURE REQUESTS

I would love to come to your school or organization and speak about life with albinism.

Currently, I can present up to an hour's worth of programming that combines a narration of my life experiences, live performances of corresponding original songs and a question and answer period.

Watch a two-minute video montage of my performance of "Change Me" at the 2005 YLF Youth Leadership Forum for Students with Disabilities.

Here's what one school said about my recent lecture/performance:

"Thank you. You helped make our First-Year Student Outreach Program even more amazing! Our students loved you and admitted when they saw you speak and perform they did not see your disability, only you."

-Katie Baum, Boston University Community Service Center.

If your school or organization is interested in more information, please drop me a line at info@BrookeFox.com.

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