The Lesser Eyes – Student Discusses Her Experience With Oculocutaneous Albinism

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By Rebecca Darling

My name is Rebecca Darling. I am a senior at Ohio University majoring in Moderate/Intensive Special Education through the Patton College of Education. Additionally, I have a minor in Communication Sciences and Disorders. I am originally from Marion, Ohio and chose Athens, Ohio for not only its beauty, but also its sense of community. People always ask me why I chose my intended career path. My answer always shines a light toward my experiences as a person with a disability, my father having a disability and my overall want to help others. Furthermore, I am a huge proponent for disability awareness and advocacy. Every person should have choices and be included. It is unacceptable to live in a word where everyone cannot communicate their thoughts and be accepted for who they are.

The Lesser Eye’s

Every parent expects his or her child to arrive in perfect condition. Parents have plans for their child from the moment of conception and strive to fulfill those plans. When those plans become altered, parents face many emotions and thoughts. The following question remains: will they accept their “different” child or push the child to the curb?

From the moment I was born, my parents knew I was different. As first-time parents, my parents anxiously awaited my entrance into this enormous normalcy driven world. They had been waiting for the moment for a long time and it was finally about to arrive. Upon arrival, however, my parents were confused. Why does she have white hair? Her eyes are moving back and forth; is she having a seizure? Long story short, I was born with a visual impairment. While my parents did not discover I had Albinism until I was six months old, they accepted me as their “princess” and their miracle baby.

Before I was diagnosed with Albinism, doctors said my eyes would stop shaking. Some doctors even said I was developmentally delayed. My parents were not willing to accept these answers. Between birth and six months of age, I had a constant eye issues—a cold in the eye, infections and strain. Through the help of a thoughtful pediatrician, my parents were directed to Children’s Hospital in Columbus, Ohio. Through meeting with a pediatric ophthalmologist, it was determined my eye “colds” were caused by a clogged tear duct. In addition, the pediatric ophthalmologist stated she has Oculocutaneous Albinism. For anyone reading this, you’re probably thinking “what in the world is Oculocutaneous Albinism?!” Trust me, my parents asked the same question and gave the look of panic.

Without becoming too technical, Oculocutaneous Albinism is a fancy term for no production of pigment in the hair, skin and eyes. In addition, the optic nerve is not fully developed—there are elements called rods and cones; these are missing. With the lack of pigment in the body, a person with Oculocutaneous Albinism has an extremely white complexion and white hair. People with this condition have blue to violet color eyes—the amount of pigment in the body creates this range. Those with Oculocutaneous Albinism experience Nystagmus—involuntary horizontal eye movements—and photophobia or light sensitivity. In addition, people experience a lack of depth perception, which can be detrimental in many cases. In combination, these elements create settings for a visual impairment. While the degree of visual impairment will vary, every person with Oculocutaneous Albinism has a visual impairment.

In addition to Nystagmus and photophobia, I am nearsighted in one eye and farsighted in the other—just imagine that! Furthermore, I have a conditioned called Astigmatism, which decreases the sharpness of objects. With all of these elements, I am still fortunate than many people with Albinism. My vision is in the 20/100 range—other people can have vision near 20/1000. By seeing at 20/100, this means to see something at 100 feet away, I need to be 20 feet away. Let’s just say I am one of the lucky ones and I am thankful for that.

When people ask about my vision, I find it hard to explain. Yes, I still see everything. Yes, I still see in color. Yes, I can tell how many fingers you have two inches away from my face. Just because I say I am visually impaired does not mean I cannot see. When I explain my vision to others, I usually use a camera example. Today, we carry out cell phones with high mega pixel cameras. Before this became popular, handheld cameras had low megapixels. To use this analogy, I say my vision is that of a low megapixel camera—I do not see fine detail or far away. When explaining my lack of depth perception, I have people walk down a section of stairs covering one eye. When one covers an eye while walking down stairs, the brain cannot correct the missing element, therefore creating a sense of false depth. While many people try to accept my visual differences, I still get those special people who think I am blind. I am not blind and never will be from Albinism—stop thinking this way!

When my parents learned I had Albinism, their reaction was that of any parent of a child with a disability—what will my child’s life be like? Unfortunately, my parents did not have many sources to turn to. Many doctors are not educated on Albinism and the condition is so rare other families are far and few in between. With my parents before born before 1960, they were aware of the movie Powder. In Powder, the main character has Albinism, but is portrayed as evil. From the moment this movie hit viewers, people with Albinism were viewed as villains and evil people. My parents worried I would be perceived this way. They worried my life would not be fulfilled. Most importantly, they worried they caused my disability.

As I grew up my parents became more knowledgeable and accepting of my capabilities. They always pushed me to try—and try hard. I guess that is why I am sitting near the end of my junior year in college with a 3.905 GPA—or maybe that is may drive. Anyway, they never gave up on me. My parents supported my decisions to try musical instruments; they supported my decisions and granted me freedom of choice. Through this, I developed the self-determination and self-advocacy skills I have today.

I did not always have these skills. During my elementary school years, I was that painfully shy child, who never said a word. For this—and my appearance—I was constantly bullied and tormented. It was not until my high school years that I started standing up for myself. Once I started taking control of my life, people discovered I was serious. This is half of the reason I am where I am at today. I took charge of my disability and did not let it become my identity.

As a senior in college, I have experienced a wide range of people and personalities. Many are accepting, thousands are curious and few are hateful. The one thing keeping me going is the family I have encountered through the National Organization for Albinism and Hypopigmentation (NOAH). With this organization, I have met many friends with Albinism and have established connections across the United States and throughout the world. Every two years, NOAH holds a conference for those with Albinism. These conferences are always anticipated by members within the Albinism community and receive high attendance numbers. I did not attend my first NOAH conference until the age of 19. Through the conference, I met many friends, developed a network and connected with parents of younger children. Some people might say these conferences are just a bunch of people in one room. While this may be true, these “people” are my family; they understand my life. With this acceptance, I am anxiously awaiting the upcoming conference in San Diego, California—July 10-13, 2014. During this conference, I will see old friends, meet new friends, direct youth and share my experiences as a young adult with Albinism.