Birthdays and  Life Purpose 

This week marks another birthday. I love birthdays, especially mine I have learned a great deal about myself over the last year. I have rediscovered how resilient I am. I have learned to pick myself up and dust myself off and continue on because life is too short to dwell on the past. I know that with a lot of love and support I can accomplish many things. 
It is with this knowledge, I am taking huge risks both personally and professionally. I choose me. I love my work with families which fulfills one of my life’s purposes, which is partnering with parents to assist them with providing amazing beginnings for their children. I have also become more active within the albinism community which fulfills another purpose of giving back. I have received many gifts in learning to love and embrace myself as a beautiful, compassionate and caring woman of African descent with albinism. Lastly, it is my goal and purpose to share my story with the world. So it is with great joy that I give to others while creating space for me. 
As some of you know I will be traveling to Dar es Salaam Tanzania in November to attend the first Pan`African Albinism conference. I am honored and so very excited I could and probably will, cry happy tears. It is my hope that you will help me make this journey possible. 
I will be launching a crowdfunding campaign this week in honor of my birthday. Please give what you can. Please share the link once it is posted. Please know how much I appreciate your generosity. 

Thank you. 

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