By Natalie Devora / Albinism Insight
Photo: Rick Guidotti, Positive Exposure

June 13th is International Albinism Awareness Day (IAAD). Celebrations throughout the world mark this global day of awareness. This year held particular significance as the fifth observance of IAAD. I traveled to New York to take part in events at the United Nations Headquarters, Times Square, the Open Society Foundations, and the New York Dermatology Group (NYDG).

How did IAAD originate? On November 18, 2014, the United Nations’ General Assembly adopted a resolution establishing June 13th as a day of International Albinism Awareness. The late Ambassador of the Mission of Somalia to the UN, Yusuf Mohamed Ismail Bari-Bari, led the effort to pass the resolution in cooperation with Under The Same Sun, an organization that promotes the rights of people with albinism (PWAs), particularly in Africa. Shortly thereafter, several organizations participated in a UN “side event” to celebrate the adoption of the resolution. The late Excellency Bari-Bari made opening and closing remarks at the event, and many dignitaries voiced their support for the resolution including the UN Special Representative on Violence against Children, a representative from UNICEF, and several key individuals in the albinism community.

I arrived at UN Headquarters at noon, allowing plenty of time to proceed through security. As I walked across the plaza into the main building I was reminded of my time as a Model UN delegate in high school. Today, I have spent the last three years volunteering with the National Association for Albinism and Hypopigmentation (NOAH) as the coordinator for all IAAD events for the United States and Canadian albinism communities. I strolled into the main building and stood there in awe. Then it was time to reconnect with friends, make new acquaintances, and take in the significance of the day.

Ikponwosa Ero, UN Special Expert on albinism, delivered welcoming remarks. Representatives from Malawi, Kenya, Mozambique, Tanzania, and Namibia made statements about their countries’ commitment to advocacy for people with albinism; in some cases, they told of decreases in attacks against PWAs in their respective countries.

The Honorable Dr. Issac Mwaura CBS MP of Kenya said during his powerful speech, “We are the in-between. White but not white enough. Black but not black enough. Disabled but not disabled enough.” This statement resonated strongly with me as an African American woman with albinism. Dr. Mwaura ended his speech equally as powerfully, “Albinism will always be thrown at you for your success or your failure. Do not see yourself through their lens.” This was a profound call to action for PWAs to embrace who we are and to view ourselves through our own perspectives.

The first of two panels featured the model and activist Diandra Forrest. She spoke of her enthusiasm and determination in being successful as a model. She also shared her commitment to being a role model to people with albinism. Forrest is one of the faces of the #NYDFColorFull campaign, a year-long initiative to raise awareness about albinism. Stephen Bognar, Executive Director of the New York Dermatology Group Foundation, along with Dr. David Colbert, spoke to the commitment of the NYDG Foundation to promote greater awareness on albinism.

The second panel featured Peter Ash, CEO of Under The Same Sun. Ash spoke of his first visit to Tanzania, when he witnessed the aftermath of a murder of a child with albinism and recognized he needed to be part of the solution. Since its inception, Under The Same Sun has committed itself to the education of children with albinism and education about albinism in Tanzania and beyond.

After the program ended we made our way to Times Square for an albinism flash mob to mark the unveiling of the #NYDGColorFull billboard. It was a momentous experience. Witnessing people with albinism of varying ethnicities reflected and represented in mainstream media was powerful. Holding space with other PWAs and knowing that this moment was and is historic held many of us in awe. We were a physical embodiment of the theme Still Standing Strong.

As a group we then walked to Open Society for a reception and remarks by Antoine Gliksohm of the France albinism organization Genespoir, NOAH Executive Director Mike McGowan, and Peter Ash. Members of the albinism community from France, India, Nepal, Norway, Kenya, Canada, and Italy were present. There were opportunities for people to ask questions and share their input on the theme for this year’s celebrations.

The day ended with a reception at the New York Dermatology Group. Members of the albinism community gathered to celebrate the #NYDGColorFull campaign. I was overwhelmed and overjoyed, excited and thoughtful. As I watched the video of the Times Square billboard, I felt deeply emotional. I always consider legacy and what we as a global community are establishing for generations to come: Visibility, opportunity, representation. We want and need to be seen for who we are.

The #ColorFull initiative is impacting the albinism community positively. The NYDG Foundation website states, “We believe that people with albinism have a life full of color.” I cannot agree more.