How Long?

I have been in a state of shock since the Charleston massacre of last week. I am heartbroken. Though I wasn’t personally acquainted with any of the 9 victims, I knew them all. They are me. They are you. They are our children, peers, mothers, fathers, grandparents, leaders.  I am old enough to remember the death of Dr. Martin Luther King and the impact on my community. I was just shy of being six years old. People gathered in churches seeking comfort and consolation. We mourned the loss of a man who had become our leader. We held our breath. 

Like so many people around the country I struggled to breathe while tears streamed down my cheeks as I watched the unfolding news both on my tablet and the television. My immediate response was a prayer offered of compassion and sympathy for those who lost their lives. As the night wore on, I felt angry, powerless, protective and devastated. Angry because no matter how people view these United States as the land of the free and the land of opportunity, this simply isn’t the case, especially if your skin is brown. I was out of sorts. I began to write: They are killing us. Walking while Black, swimming while Black, breathing while Black and now praying while Black! Do we not have the right to simply be without being under attack?  Unable to write further, I sobbed. 

The next morning I contacted my daughter via text, “Be safe in the world today my love.” What I wanted to do was to gather her along with my nieces and nephews close, I know this is what Black parents throughout the country were feeling if not doing as well. And yet we cannot shield or shelter our young from the world. We can however educate them and empower them to pay attention and to be part of the change. Sadly, we must also give them tools of survival in a culture that is pervasive with racism. 

I am well aware of racism. I have watched those I love being followed in stores by over helpful sales attendants. I listened to countless stories told by my grandmother of abject poverty and how her parents, who were sharecroppers, were always referred to as boy and girl even though they had children of their own, by the farmers they served. I have been called nigger lover by white people who made an assumption based solely on my skin color. People only see what they feel most comfortable seeing. I am not Caucasian. I am a Black woman with Albinism. I am frequently mistaken for white. 

 Dylann Roof was welcomed by the Emmanuel AME parishioners last Wednesday evening, who only one hour later became casualties of domestic terrorism. His actions were intentional and deliberate. His actions were a blatant act of racial violence aimed at a people he deemed unimportant. 
Just as the lives of my ancestors who were brought to this country against their will mattered, as do the lives of all African American people living and slain matter. Wake up America! Similar to the Civil Rights movement of 55+ years ago, we are on the verge. Will we bring forth change? Will we address racism head on? Or as the line from Redemption Song says, “How long shall they kill our prophets while we stand aside and look?” 


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.

International Albinism Awareness Day is here!!!

I should be sleeping but I’m so excited that today has come. Today we celebrate Albinism. I am overcome with emotion. Never could I have envisioned a movement such as this where the world gets to unite with people with albinism to celebrate, to stand proud, to bring awareness and education about this condition. 
Just a year ago I attended a NOAH national conference for the first time. For me the experience was life changing. I had never encountered other African American PWA’s. Throughout the weekend I marveled at the similarities we shared as well as the many differences. New friendships were formed. My life has been enriched and I am forever thankful that I trusted myself and went.
I will post after the BBQ I’m hosting in honor of the day. Thank you for taking this daily journey with me. 

The eve of IAAD International Albinism Awareness Day

It is the eve of International Albinism Awareness Day. In some parts of the world celebrations have already begun. This is our time. Many have done the work, lain the foundation so that we can unite to celebrate our individual and collective accomplishments. Personally, this heightened awareness for albinism is on par with the joy and pride many in my country experienced in 2008 when voters elected the first African American President, President Barak Obama. I see IAAD as a beginning. Like those who worked endless hours, weeks, months and years to make it possible for the United States to elect an African American to lead the country, similarly, many individuals and organizations paved the path for the United Nations to decree June 13th as a day of awareness, a day of celebration, and a day to gather as community. 
Below I have provided links to messages from the United Nations High commissioner, the National Organization for Albinism and Hypopigmentation, Under The Same Sun and from Patricia Wilocq, a renowned photographer whose current project Blanc Ebène, White Ebony is a collaboration with the Gertler Family Foundation. These are but a few of the many individuals and grmoups who advocate for people affected with albinis. 

UN High Commissioner Message

Patricia Willocq is a freelance photographer born 1980 in the Congo. 

After completing her Master’s degree in Translation at the Higher Institute of Translators and Interpreters in Brussels (ISTI) she decided to travel around the world and developed her photography skills along the way.  
Amongst the many assignments she undertakes around the world she also dedicates time to support the work of associations and NGOs fighting in the field of human rights. 
White Ebony, one of her last photographic essay about people with albinism in the Democratic Republic of the Congo has won a honourable mention at the Unicef Photo of the Year Award 2013 and has been exhibited at Office of the United Nations High Commissioner for Human Rights.
She endeavours to avoid miserabilism and her work is often associated with projects that promote tolerance and dignity. 
White Ebony- Blanc Ébène 

Two Days and Counting

Time has flown by. When I committed to writing and posting daily as a way to share more about albinism, I knew it would pose a challenge for me. Until now, I have been at best an intermittent blogger. The past twelve days has allowed me to push myself as a writer, delving into some personal experiences which I knew would and have generated lots of emotions. 
Growing up with albinism in the 1960’s and 1970’s in the Black community was far from easy. For my culture this was a time of standing up for our rights, requesting, no demanding racial equality. Honestly, we continue to fight this battle today.. As a young girl, (six) I would be in my grandparents backyard, equipped with a radio, in my personal shaded alcove. It was really an open shed that housed garden supplies. I could be heard singing “Say it loud, I’m Black and I’m proud” by James Brown at the top of my lungs. I loved that song. Indeed I was black and proud. For me it was a declaration of my identity. 
Later as a teenager, upon enduring horrible bullying by schoolmates who were also black did my thinking begin to change. I did not understand why they did not see me as one of them, when I too, was/am black. 
When I went off to college, I did so a little early to participate in an EOP Educational Opportunity Program for students of color at the university I attended. When I arrived, the student registering everyone kept trying to send me over to a different dorm for sorority rush. After I insisted he look up my name did he see for himself I should be there. This was the beginning of an entirely different experience. Overwhelmingly, others did not view me as ethnic. I had the same experience amongst the other students of color. My way of dealing with this was to form friendships with whomever I pleased. Whomever, in this case meant whites. I stopped dying my hair. I blended in. I was a chameleon. 
As an adult, I take my identity seriously. I have come to peace with both being African American and with having albinism. When people ask me, “so what are you?” I know they mean where do I fit ethnically. Most often I respond with, I am a white skinned black woman.  

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 want to talk about family. Families are important to the social and emotional development of children. Within the family unit children are loved, nurtured, taught valuable skills and have a sense of belonging. At least this is the case when family works. When, in the event a child, especially a child with albinism, is without parents or siblings, then there is loss.    
My family of origin is huge! Just look at the photo above. And this is just one side of the family. I grew up amongst my siblings and tons of cousins on my maternal grandmother’s side of the family. There were gatherings, celebrations and Sunday dinners after church. When with my cousins, I was free to just be. The older ones looked after the younger children, of which I was one. Yet there was camaraderie, there was love and there was fun. 
I have shared a small bit about my mother. Yes she was surprised by giving birth to a child with albinism, yes she did the best she could, given my needs and the care of her other three children, and yes she loved me as much as she could. She was my advocate, demanding that I be allowed a mainstreamed education before that was ever a requirement for children with disabilities. And, yes, she reached her own breaking point where she just wanted me to look like everyone else. By the time I was in high school, mother could not do or give anymore for/to me. She would address me in the third person or ignore me altogether. I continued to have household responsibilities, however more often than not I was left to myself. 
For many children with albinism living in East Africa family has come to mean the relationships they have with their peers, teachers and care givers within the residential schools they call home. They do not have parental support and love afforded others, for many have been shunned by their communities. I cannot pretend to know how these children feel about their situation. I do however have compassion for them. I do know that children are resilient and that in these schools there is camaraderie, there is a bond shared. For without their existence the safety and well being of these young people would be in greater jeopardy.   
I have been fortunate enough to leave behind aspects of my family of origin that no longer worked for me and instead create the family that suited me. Back in high school I had a teacher who saw potential in me and who also recognized I needed mentoring. She is still a vital part of my life. I like to say that I have two mothers. I was birthed and raised by one and sent off to the finishing school of the other. I now refer to Carol as mom. She has and continues to love me, push me, encourage me as well as tell me hard truths when I need them. Mom is the woman I go to when I am troubled or when I need to bounce ideas off of someone. This is the nature of our relationship. Mom and i share things with each other. Deep things. I have been profoundly affected having her as my mom. My albinism has never been an issue for her. Mom has always seen well beyond my physical attributes. I have learned immeasurable skills from her for which I am eternally grateful. Coupled with the childhood lessons I learned from mother I am an unstoppable force. 
There are those who believe that blood is thicker than water. I believe that it is the water along with the blood that sustains me.