MY UNIQUE LIFE WITH ALBINISM

I love my paleness! It's decidedly different! My legal blindness, however, is an everyday challenge. It results from abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. I can't see far and I’m sensitive to light, but get something close enough to me and I'm good to go.


I am the second of two children and the ONLY person in my family lineage with albinism. Surprise Mom and Dad! Newborn babies with albinism can be non-responsive to visual stimuli. My parents thought I was completely blind until I was three months old and I cooed when the Christmas tree lit up.  


In school, I was called “Four Eyes”, “Grandma” and took my fair share of dodgeball smacks. At the same time, I began  to display a natural ear for music. With help from my Grandmother, I began performing at age 5. Music gave me confidence. When I started writing lyrics and songs at age 10, I discovered another way to express my thoughts...and counteract the daily trials of middle school.

 

I was beyond excited to pursue a degree in Songwriting at Berklee College of Music. In "big city" Boston I rode the T and learned to navigate busy streets using sound cues. I fine-tuned my writing and performance skills at Berklee then relocated to Nashville after graduation to
join the songwriting scene.


Arriving in Nashville, where they drive to get their mail, became the first real test of life without a drivers’ license. When I tried hailing a cab the driver laughed, “Where are you from? New York? No one hails a cab in Nashville” My walking was “famous”. A stranger stopped me at the grocery one day proclaiming, “I know you! You’re that girl that walks everywhere!”

  

My artistic life in Nashville was fruitful (album, band, job at a studio..) but my daily life was a transportation nightmare. In 2000, I made the move to New York City and...sweet subway freedom! One year after, I met my husband. He’s a musician too. He thinks my albinism is “pretty cool”.


I now work for a non-profit devoted to visually impaired music and media professionals. It’s an honor to work on behalf of  like-minded blind artists. I continue to work on new music, writing songs for other artists and performing frequently. My albinism is something I manage everyday but honestly, it’s also brought me so many life-enriching experiences and opportunities, I wouldn’t change the genetics if I could.

 

ORGANIZATIONS CLOSE TO MY HEART:


VISIONARY MEDIA

Dedicated to providing opportunities for blind and visually-impaired people in music, media and advertising. I’ve been a Visionary artist since 2008 but recently joined the team full time as Director of Client & Artist Relations. Visionary’s New York City facility hosts Songwriting workshops, Mentor Sessions, Jam nights and Studio Training for Recording Engineers.

More information: www.VisionaryMedia.org


             Learn more about Visionary’s mission in the video below:

 

TOP TEN “I CAN’T BELIEVE THEY ASKED THAT” QUESTIONS:

1.Is that your natural hair color?

2.Are you Scandinavian, Swedish, German?

3.Do you bleach your eyebrows?

4.How I can I get my hair to look like THAT?

5.You must burn very easily, yes?

6.Are you not allowed to tan?

7.Did your parents keep you in the basement?

8.How come you don’t have red eyes?

9.Are you allergic to the sun?

10. Do the curtains match the…?


BROOKE’S TIPS & TRICKS FOR NAVIGATING LIFE WITH ALBINISM:

•When trying to "read people" I rely more on verbal cues. Choice of words, tone of voice, etc.

•Memorize as much information as possible: addresses, streets, menus.

•GUESS. It’s OK. Sometimes, I guess wrong. Like the day in junior high when I bumped into a trashcan in front of all my friends and not looking up, I said, “Excuse Me” :-)  


PRESENTATIONS AND EVENTS:

I’ve been invited to speak about albinism and perform live at events at New York’s City Hall, The United Nations, The U. S. Department of the Treasury and at National Conventions for NOAH - Natl. Organization of Albinism and NFB – Natl. Federation of the Blind.



Here’s a definition of Albinism from The National Org. of Albinism - NOAH:

”The word “albinism” refers to a group of inherited conditions. People with albinism have little or no pigment in their eyes, skin, or hair. They have inherited altered genes that do not make the usual amounts of a pigment called melanin. One person in 17,000 in the U.S.A. has some type of albinism. Albinism affects people from all races. Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds. Sometimes people do not recognize that they have albinism. A common myth is that people with albinism have red eyes. In fact there are different types of albinism and the amount of pigment in the eyes varies. Although some individuals with albinism have reddish or violet eyes, most have blue eyes. Some have hazel or brown eyes. However, all forms of albinism are associated with vision problems.” 
 

I WAS BORN WITH ALBINISM – a genetic condition causing a lack of pigment in the hair, skin and eyes almost always causing legal blindness.

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NOAH: THE NATIONAL ORGANIZATION OF

ALBINISM & HYPOPIGMENTATION.

NOAH is an organization of people with albinism, their families, and related professionals. NOAH provides information and support, promotes public and professional albinism education, and encourages research that leads to improved diagnosis and management of albinism. I’ve served as a National Board Member since 2006 and have performed at NOAH conferences and events across the country.

For more information: www.Albinism.org


“THE DA VINCI CODE” CAMPAIGN:

CHALLENGING “EVIL ALBINO” STEREOTYPE IN CINEMA.

In 2006, in advance of
the theatrical release of Dan Brown’s “The Da Vinci Code”, I spoke to the media (Fox News, CNN, ET, KROQ) on behalf of NOAH, The National Organization of Albinism and Hypopigmentation). Our campaign highlighted the villainous character “Silas the Albino Monk” and called on Hollywood to retire the evil albino cliché. Silas marked the 68th such character in cinema since 1960. NOAH’s national call for awareness successfully challenged writers and directors to take a more thoughtful approach to depicting characters with Albinism. 

Read more about the history of albinism in film:

http://en.wikipedia.org/wiki/Albinism_in_popular_culture

http://www.albinism.org/popcult/film.htm


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PERFORMING ARTS DIVISION

NATIONAL FEDERATION OF THE BLIND

A collective of talented NFB Members who present annual talent showcases at the organization’s national convention. I’ve served as a board member since 2006.

More information: http://nfbpad.wordpress.com/


‘SOUND IN SIGHT: VOLUME 1”

Produc
ed by The NFB Performing Arts Division.

I’m proud to say I helped put together this groundbreaking, multi-genre compilation of 18 songs by Blind and Visually Impaired musicians from around the country. This album has something for everyone - including my song “Cinematic”.

Buy it here:  http://www.cdbaby.com/cd/padotnfotb


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SEPTEMBER CONCERT

Fill the skies with music - that’s the mission of September Concert every year on September 11th. As a member of the September Concert Jammers, we brought the spirit of SC to Central Park, the United Nations and Tribeca Film Festival Family Day.

More INformation: http://www.septemberconcert.org


Watch the members of the September Concert Jammers ring the opening bell at the New York Stock Exchange!!

 

TRULY INSPIRING ORGS:

POSITIVE EXPOSURE

New York City fas
hion photographer Rick Guidotti explores the beauty of albinism and other rare conditions by interviewing and photographing people around the world. His collections have been seen in Life Magazine and on display at the Smithsonian in DC

More information:

www.PositiveExposure.org


UNDER THE SAME SUN

Under
The Same Sun (UTSS) Fund exists to promote, via advocacy and education, the wellbeing of persons often marginalized and misunderstood. Specifically, we focus on those who are disadvantaged by disability and/or poverty. At UTSS, we are driven by the belief that all persons have intrinsic value as each is created in God’s Image. Accordingly, we also believe that all persons are worthy of love, respect and, above all, dignity. The UTSS Fund will support causes globally that meet these objectives and are approved by the Board of Directors. Currently, all UTSS efforts are focused on the crisis of persons with albinism in Tanzania.

More information:

www.UnderTheSameSun.com