Too White to Be Black and Too Black to Be White: Living with Albinism

By Lee G. Edwards

This book takes a close look at the life of a black male living with albinism. It gives the reader insight as to what life can be like for a black male or female with albinism growing up within the black community and the impact public humiliation, intimidation, and ridicule can have on an individual long-term.

In addition this book can serve as a guide to both parents and young adults who may know someone or may themselves may be dealing with the hardship(s) of living with albinism. I not only discuss my own experiences but also those of others who have had a great influence in my life.

• Language: English
• Publisher: AuthorHouse
• Release date: May 1, 2002
• ISBN: 9781425954062

Lee G. Edwards

Lee G. Edwards is the author of one prior published work, "Too White To Be Black and Too Black To Be White: Living With Albinism". Mr. Edwards was born December 27, 1961 in Tuskegee Alabama. He is one of five children of and the son of Mr. Marvin Metcalf and Mrs. Margaret Metcalf. Mr. Edwards is a 1980 graduate of Dunbar High School in Dayton, Ohio. In 1989 he earned his associates degree in business from Sinclair Community College in Dayton, Ohio. From 1976-1989, Mr. Edwards was a member of Phillips Temple C.M.E. church in Dayton, Ohio. In 1990 Mr. Edwards continued his education at the University of Alabama-Birmingham (U.A.B) earning his bachelors degree in Human Resource Management. He is also a member of U.A.B.'s Trio Alumni Association.

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Copyright © 1998, 2001/2011 by Lee G. Edwards. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 02/07/2013

ISBN: 978-1-5882-0063-1 (sc)

ISBN: 978-1-5882-0064-8 (hc)

ISBN: 978-1-4259-5406-2 (e)

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

This book is printed on acid-free paper.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Table Of Contents

Dedication

In Loving Memory . . . .

Introduction

A Rude Awakening

Many Years of Hell

Family Relations

An Observation

A Reality Check

More Knowledge! . . . Less Ignorance!?

About the Author

Dedication

To the people and organizations that have made a big difference in my life. Saying thank you is not enough but I am sincerely grateful.

Mrs. Margaret H. Metcalf: Mama, you gave me the gift of life and that is something that I can never repay you for. Always know that your unconditional love has been and will always be appreciated. Please forgive me for not being more open with you all those years when I was catching hell from my black peers.

Mr. Marvin A. Metcalf: Daddy, you took care of me and my siblings even though we are not your biological children and that takes a real giant of a man, with a heart of gold to be able to do that . . . thank you and always know that I love you.

To my sisters and brother: Sabrenia, Peggy, Charlene and Ernest. You all have always loved me unconditionally. You fought for me and there were times when I did not realize it.

Mrs. Josaphine Jiles (My Godmother): Mama, you were always there when I was too ashamed to talk to anyone else . . . Love always.

J.J.: I thought you came into my life too late but God knew that it was the right time. You could have turned the other way when I needed encouragement but I am so grateful that you did not.

Ms. April N. Hines: Baby girl, the love we shared will forever stay in my heart. If I could take away the emotional pain that I caused you while we were together I would do it in a heartbeat. You gave me so much and I hate that I gave you so little in return. You will always be my princess.

To The National Organization for Albinism and Hoypopigmentation (N.O.A.H.), Dayton Area Persons With Albinism, and the vocational rehab centers in Dayton, Ohio and Birmingham, Alabama. These organization became a part of my life at the right time . . . Thank you!

I’d like to acknowledge radio stations in Dayton, Ohio, and in Birmingham, Alabama for giving me the opportunity to educate the public about albinism.

To Stanley Flakes, Kenneth, Johnny and Kevin, Vincent Connor, Thomas T. J. Edwards, Jr., and Bobby A. Miller: Fellas your unconditional friendship was and is truly a blessing, thank you.

Special thanks to my God Aunties Ms. Joan J. Padgett Ph. D, RN, CS. and Ms. Louise Cunningham CNS, RN both health care professionals at the Department of Veterans Affairs, Dayton Ohio, you both are two special ladies that were there not only for me but to help me to help others with albinism. I only wish for more genuine people like you two ladies, you see a person, not a color. You have also been a blessing to me.

To Mrs. Betty Jean Duff, Mrs. Felicia Johnson, Mr. Keith Culllen, Ms. Leah McCraney and Ms. Tracey Kell. Thank you. You all always believed in me.

In Loving Memory . . . .

Although I can no longer touch your hand, the thought of you will always touch my heart.

Mr. Lonnie Sugar Babe Lee Hooks: Granddaddy, you taught me so much about life and living. I miss you!

Mrs. Marie Howard Hooks: Big Mama, there is so much that I remember about you but yet I never really got to know you. Despite this I am sure that you loved me very much.

Mrs. Mary Tyner: It hurts knowing that I can’t change the bad times but despite it all I know that we truly loved one another.

Ms. Bess York: Auntee you were truly one unique lady. I did not understand you when I was a kid but your wisdom and way of thinking will always be a part of me and those you left behind.

Mrs. Matilda Hooks Smith: Auntie I’m glad that I was able to share my book with you before we said goodbye . . . I love you Miss Tilly from New York City!

Mr. Curtis Hooks, Sr.: Uncle Curt, those memories of hearing you call me Scobe seems like yesterday.

Mrs. Annie L. Metcalf: Time did not allow us to really get to know one another but I was proud to have you as my grandmother.

Mr. Darryl Lynn Dumas: My friend, a part of me will always feel like you left me too soon, but I know you are in a better place looking down on us. You were indeed a class act . . . Rest in peace!

Mr. Richard Phillip McKleroy: You were one of my many students, but most of all you were one of my few sincere friends. I was only a phone call away. I’ll miss you.

Introduction

The purpose of this book is to generate awareness concerning the subject of albinism, particularly within the black community. For over thirty years I have been silent while members of the black race have continually ostracized, ridiculed as well as humiliated me in public. Because of this constant torment I soon became my own worst enemy. This book is intended to give parents of children with albinism an idea of the constant torment their children could experience, due to the fact that there is limited information available on albinism. This can serve as a reference book for parents, so they can communicate with their children, and thus will have some idea of how their child may be feeling.

I want to inform all readers in advance that this book may contain examples that are very extreme and this may cause a sensitive reaction. The reason for these extreme examples is because throughout my life I have on too many occasions not been taken seriously when I have tried repeatedly to express what I was feeling inside as a result of the torment I was constantly subjected to. I also want to point out that the issue of race is discussed in great detail, and I also do not hesitate to express my opinion. This is because I have not only experienced racial prejudice by people who are white, ironically the majority of the constant ostracism and ridicule came from people who were from my own race who did not want to acknowledge the fact that I am a member of the black race. This has given me a very interesting view on both races.

A Rude Awakening

I have strawberry blond hair, bluish gray eyes, and white freckled skin—but I am not white nor am I bi-racial and to those people who insist, I hate to disappoint you all but I am not a Creole which in general refers to a person that is bi-racial. I am of African American descent, yes that’s right damnit, I’m a black male with a condition known as albinism. Albinism or Albino is a condition whereby the skin, hair, and eyes are lacking in pigmentation. Albinism is present in all races. According to information provided by the National Organization for Albinism and Hypopigmentation (N.O.A.H.) one in every 10,000 blacks are born with albinism and it is present in one in every 20,000 whites. Also according to N.O.A.H., both parents must be a carrier of the recessive trait to have a child born with albinism.

Being born with albinism brings about tremendous challenges to adapt socially. Furthermore, albinism is accompanied by moderate to low vision. Visual acuity ranges from 20/50 to as low as 20/400 according to information provided by N.O.A.H.

My visual acuity is 20/200 which classifies me as being legally blind. In everyday terms this means that I would have to be within 20 feet to be able to read print that someone else can read from 200 feet away.

The combination of having albinism and low vision presents me with a hell of a challenge in all aspects of life.

Imagine growing up in a society where members of your own racial group are ashamed of and reject you because of your skin, hair and eye color. This is what life was like and continues to be like for me. I will attempt to give the reader an understanding by explaining and discussing how difficult it has been trying to endure the emotional pain, frustration, anger, and shame that I have experienced living in a society where one’s race and physical characteristics greatly impact how you are accepted or rejected by your peers.

For over 30 years I have struggled with learning how to handle being different but yet live a normal life. The attempt to adjust has been extremely costly.

Before I realized how differently society viewed me and before it gave me a rude awakening to how cruel and nasty people can be, my childhood was relatively peaceful (except for the times I spent around my biological father). We had fun playing with my older brother Ernest. And as kids are known to do—we participated in our share of mischief. For example, we satisfied our curiosity by shooting out one of the lens in my eyeglasses with a BB gun to see if we could duplicate a television commercial. And the time we decided to call the local bus station to pick up our grandmother, Mrs. Marie E. Hooks, because we thought she was being mean to us; but of course she loved us both very much.

I was about four years old when I first noticed that I did not resemble my brother. I remember that moment so clearly. We were washing our hands and I said: My skin is lighter than yours. And he replied: I know. At that time I did not know my color was due to the lack of melanin (a pigment in my skin) and the other characteristics before mentioned would cause me so much pain and have such a great impact on my life.

It is only appropriate that I begin explaining how having albinism began causing me a long-term problem. Although most of the difficulty experienced was outside my home, my first encounter with cruelty and rejection was from my father. Being that I was only a small child, I could not understand my father’s cruel treatment. He constantly called me names as: Dooling Darling, and Little Pink Elephant, threatening to put a pink bow in my hair, made in reference to my physical make up. He would lie me across his knees and pull on my legs as he laughed: Gonna stretch you out for a hanging. I always thought that perhaps I was doing something wrong that caused him to taunt me until I cried and he seemed so pleased. I hated for him to come home because I knew he would began to harass me. He would not leave me alone. One day he stayed home from work because he was going to take Ernest to school. I did not want to stay with him until my siblings came home

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Before I had such a rude awakening in reference to being a black male with albinism, I was not old enough to appreciate being as happy as I was while being held by Ernest in this 1962 photo. That is my sister Peggy on the right and Sabrenia on the left. It would be a long time before I could smile like this again. Some people thought that Ernest was holding a doll at first glance at the photo.

from school. I attempted to get out of the car with my brother but my father yanked me by the arm and I knew I was in trouble the rest of the day. He abused me verbally and teased me the entire time I was with him. I was so glad to see my sisters and brother come home. Sometimes my oldest, sister, Sabrenia, stood up for me when our father harassed me and he would leave me alone for awhile. Overall, I could not understand his actions. Years later my mother told to me of a cousin (whom I have never met) has albinism—Willie James Edwards. She told me that my father mistreated him also. In 1986 I learned that my father does not accept me as his child. That is the last time I saw him.

It is interesting, at an early age, black kids can be so disrespectful and so outspoken and very vicious when they see differences in people that they do not understand. I learned early as a pre-schooler that other children did not want to be near me because of my appearance. It was very traumatizing and intimidating to be ridiculed but not understanding why. There was a boy and a girl (I do not remember their names ) who teased me every day that I attended that nursery. I would go home crying and tell my mother that I did not want to go back to that place. Thankfully, the time came for me to leave the nursery, I entered kindergarten and found my previous experience at the nursery and the taunting by my father was only a sample of what would probably be a life-long process: Fighting cruelty and ignorance within my own race when it comes to misunderstanding albinism and what causes it.

One would expect things to get better as the years went by and attempted to adjust to life’s daily activities and the people in one’s environment. But this did not happen. I was not prepared and therefore I did not anticipate things getting worse but unfortunately they did. I found the next six to eight years of school was like being sent to war without a gun. I was a sitting target. The experience I had in kindergarten was unforgettable. My classmates were either afraid of me, because they thought I had a disease because of the freckles covering my skin, or they did not know what