Strength Beyond All Odds: Albinism and the New Normal
A man’s strength they say, is seen not in the challenges he faces, but in how he reacts to such problems. This year, the International Albinism Awareness Day, IAAD celebration focuses on the achievements, and successes recorded by persons with albinism, PWAs globally. Hence the 2021 theme Strength Beyond All Odds.
There is a whole lot of myths and misconceptions about albinism and PWAs such a; PWAs don’t eat salt, don’t get married, only see at night, that their blood and body parts can cure HIV and AIDS and also make you rich; this is why they are hunted like animals in East Africa. These are all untrue. PWAs live healthy lifestyles and make healthy choices too. Yes, due to the ultra violet rays from the sun which causes skin cancer, PWAs are advised to stay off the sun or ensure they have proper clothing which covers the exposed parts. They are encouraged to use umbrellas wear hats, sunglasses apply sunscreen so as to protect their skins. In obeying these directives, they continue to power, despite these visible limitations.
Albinism, in any of its forms, is the result of heritable mutations that lead to defective melanocytes, unable to properly synthesize melanin and to distribute it through dermal tissues. Simply put, albinism is the inability of the skin cells to produce enough melanin in the eye, skin and the hair, thereby making persons with albinism vulnerable to the harmful effect of the ultra-violet rays (UVR) from the sun. Nigeria has one of the highest prevalence rates in Africa with over 6 million persons living with Albinism, and it is estimated that hundreds of them face discrimination and stigmatization annually.
In his message for the 2016 celebration, UN Secretary General said, “Albinism is a genetic condition that affects people throughout the world, regardless of race, ethnicity or gender. Yet, tragically, people with albinism continue to suffer widespread discrimination, stigma and social exclusion. Very many, including children and women, are extremely vulnerable, isolated and subject to abuse and violence. The endorsement of a Regional Action Plan on Albinism in Africa by the African Commission on Human and People’s Rights as well as by the Pan African Parliament is a key step forward”.
Four months after the first IAAD, OAM Foundation was birthed and has become one of the leading NGOs in Albinism advocacy in Nigeria, leading social campaigns in the promotion and enjoyment of rights of persons with albinism. Almost six years into our operations, our efforts as an Albinism Awareness advocacy group has yielded tremendous efforts as we have been able to galvanize more PWAs to rise and shine, be proud of their colour and see beyond the complexion. Beyond all odds, we encourage PWAs to live meaningful and purposeful lives; developing themselves, acquiring skills and also contributing to the economic development of their communities.
Since 2015, the Foundation has expended millions of naira in helping thousands of PWAs both directly and indirectly to become the best version of themselves. From empowerment, education, awareness, confidence building, provision of sunscreen and medicated sunglasses to organizing several fora on issues concerning PWAs, we have invested in improving he lot of many and our records show. Since the pandemic started in 2020, our interventions has reduced since 100% of our funding comes from the founders. This has impeded the extent of our impact in the area of empowerment and scholarships, nut we have remained resolute in social campaigns. We are open to external donors and grants from those who share our vision.
As we celebrate the 2021 edition, the management and Board of the OAM Foundation is using this medium to thank the outgoing United Nations Independent Expert on the Enjoyment of Rights of PWAs, Ms Ikponwonsa Ero, for her many contributions to the improvement of the lives of PWAs globally, while serving out her Mandate. Today, we celebrate an accomplished young person who was given a voice to PWAs to see beyond their complexion and indeed embrace their strength beyond all odds. Having served two terms as of 3 years each, IK as we fondly call is set to leave to pursue other endeavors. We wish her success in her future pursuits and look forward to working closely with the new UNIE.
In conclusion, it is intrusive to note, that the family has the greater role to play in ensuring that PWAs celebrate their strengths beyond all odds in the new normal since it is the first environment every PWA is exposed to. It is the duty of the family to provide a strong support system for the PWA – to build their self-esteem and embolden them to be confident enough to face the many challenges of life. Parents must treat their PWAs as they treat their pigmented children. My parents always treated us as one and they helped us in our confidence building. Schools must put adequate measures that would ensure conducive learning for PWAs. Teachers should be patient with them and encourage them to learn using new methods that puts less stress on the eyes. The society must see PWAs first as humans above anything. This is why we preach beyond the complexion.
OAM is open to partnerships. We will like to see more collaborations. More sincerity by stakeholders in ensuring that the persons with albinism enjoy their fundamental human rights. We must always see PWAs beyond the color of their hair and skin. We must see the soul that lives within them. To do these would mean to embrace PWAs as humans that they are. When we limit the odds, then, more PWAs will discover their strengths, and truly shine.
Happy IAAD 2021!
Director, Communications and Strategy