Reflections on Albinism Awareness Day

 The morning began with a text from my sister Felecia, “Love you Cotton Top. Enjoy your special day.” I smiled remembering the forgotten childhood nickname that only she used. I spent the afternoon with some of my loved ones. The best part of the day was having the platinum trifecta together once again. Three decades of friendship is a remarkable thing. Diane, Dale and I came into our own together. I could not have planned for a better pair to celebrate and reminisce with. 

We caught up on with one another and talked about how our lives have been enhanced because of albinism. We of course migrated from my beautiful backyard to the comfort of the family room. My daughter and niece were intrigued, sometimes hanging on each divulged sharing. Everything from “you broke my heart when you chose the path you did.” to “I never told you, how much you were my role model.” We laughed and teared up, appreciative of the love and honesty we shared amongst us. 

I am thankful for friendship. I am thankful for the unconditional love of family and friends. 
Albinism Awareness Day is over and yet the work continues. This day is symbolic of what many are doing to create awareness and education about albinism. We, PWA are not only visible, we are everywhere. Together with friends and allies, individuals and organizations are committed to improving conditions for children and adults living with albinism.

I am reminded of the activists who campaigned, who were vigilant. who showed up by any means possible to bring awareness to AIDS and its impact on men, women and children in Africa. The activists were tenacious, they were dedicated and they were tireless in their commitment toward research, services and education to communities worldwide. Their work laid the foundation for future activists addressing many causes. And like our predecessors, those of us who have taken on the mantle of bringing albinism to the forefront of governments, physicians and individuals attention to make change do so with renewed vigor, with tireless commitment and most of all with honor and respect.


Three Days and Counting

International Albinism Awareness Day is three days away. I am so very excited. Never before has there been an opportunity to bring worldwide attention to this condition. Additionally, with the passage of the measure by the United Nations my hope is that through education, awareness and publicity, people with albinism in other countries who currently live in fear and have fewer resources, will have improved lives. 
Just as I see a significant increase in awareness about albinism within the United States from that of my childhood (there was none), I believe more knowledge and outreach are needed. When I attend events sponsored by NOAH, (National Organization for Albinism and Hypopigmentation) it is the children I enjoy most. I love seeing their joy and freedom. I am in awe because so many of them are forthcoming and direct about having albinism and being visually impaired. I find myself in a state of “wow.” 
Can you imagine the difference possessing the security, safety and freedom to share about yourself would mean for children throughout Africa, Asia and the Middle East? I believe they would stand tall. They would take pride in who they are rather than be ashamed or be in fear of being shunned because of a condition they are affected with.
There are numerous organizations that are doing the hands on work especially within East Africa. Asante Mariamu Under The Same Sun are two such organizations. Additionally, The World Albinism Alliance provides a list of organizations worldwide that focus on albinism. 

I am Who I am

I am who I am and I care not what you think about me. This is the grown up version of sticks and stones may hurt my bones but names will never hurt me. The truth is most of the time I am oblivious to the stares bestowed upon me. I am focused on getting from one place to another, or most recently, navigating my way through a concert venue. Although I may not see people staring, I can feel them doing so. I learned a long time ago that if I allowed myself to be affected by every look or insensitive statement hurled my way, I would never leave home.   
 However, unlike the rhyme, words do hurt me. Sadly I have been most hurt by the words of people form my own culture. I have been asked why I was at events that were solely for African American women. I have been told I did not belong, was not welcome and that simply put, I wasn’t Black enough. Those who declared these statements might well have told me that I wasn’t’ human for I was treated as other. What this did to me, how I was affected, was with internalized racism. I already battled the “I am way too different to be embraced by this community or that community” and yet I continued to show up. Though the bottom line was that I never felt completely me within the black community.  
As a teenager I was bullied. I was physically attacked in junior high school mostly because of the color of my skin. The attack left me with a bloodied nose, bruised ribs and with a sense of terror. Afterward, I no longer wanted to be black. The first year of high school bore similar encounters. The difference was that my older brother was in school with me and upon learning that kids were throwing food at me, he did what many big brothers often do, he punched the boys. He let them know I was his sister and I was off limits. In time i developed friendships. I had a core group of cohorts and we looked out for one another.  
In my early adulthood, I began to spread my wings. Prior to this time, I had been very shy. The shyness was a cover for fear. Fear of being treated poorly, fear of not being able to see what might be coming my way and fear of rejection. Living life affected with albinism makes me vulnerable in the world. This is a reality. And yet, I believe in living life fully. 
I have worked to heal the internalized self hatred that developed as a result of my appearance. This has been at times hard and yet incredibly rewarding as I am clear that I define myself as an African American woman with albinism. I also say that I navigate the world as a white skinned black woman. When I share this with people, in just this way, they get it. Consequently there is a greater degree of acceptance. 
Part of living my life fully has meant that I have come to be comfortable in my own skin. I have come to love myself. Unlike the girl I once was who, instead of pushing back against those who teased me,, I now pause. I ask myself, how do I wish to address the insensitive or ignorant statement directed my way? Honestly, my response depends on the context with which someone comes at me. And believe me, I can tell by the tone of their voice. If there is genuine curiosity, I am more inclined to share information about albinism. If, on the other hand, there is judgement or plain meanness, I choose to walk away. Because, in the end, I am who I am and I care not what you think about me