Melanin, Sunshine and the Albino’s Dream of Disability?
“ if you care about your dreams, if you are serious about making a difference with this one life you’ve got, then LIVE BY DOING’. Onyinye Etoniru
This piece isn’t an introduction to Albinism 101, neither is it a pity party, so don’t expect to much insight into the concept of Albinism, jargons and the like on one hand; and, sentiments about the people living with albinism. I certainly will be breaking your hearts if you are expecting that.
So now that we have set the ground rules, let us proceed!
When OAM Foundation contacted me and asked that I write a piece for this space I was overwhelmed and scared at the same time. Immediately I was gripped with a sudden fear and emptiness; that feeling that you don’t have something to offer, a feeling of one being put to the test to see if what has been heard or seen is a fluke. So I thought hard and this is the product of that thought, it is not a form of validation or vindication but a response to call from deep within to continue to lead that campaign dispelling the notion that albinism is a form of disability; a certain death sentence.
Being albino and being disabled
|The albino who believes his albinism is a disability is as guilty as those who hunt and kill albinos for ritual purposes. He also as guilty as those who mock and make sneer remarks about him because of his skin colour or lack of melanin. That is one sin I was guilty of in the past, but have fully repented from long ago. I would like to state clearly;I AM AN ALBINO AND I AM NOT DISABLED!|
I have always believed that my purpose on earth is to serve as a conduit pipe, connecting people to their purpose. The passion for service drives me. It’s not easy but I am emboldened by the success of the little efforts I make to change the environment around me. For me, my most cherished asset is my ability to speak… to speak eloquently with elocution. Like me, many other albinos out there have some very unique talents only special to them. Perhaps, this is the reason why the hunt is rife in the eastern part of Africa.
For long, it has been held that the lack of melanin and the intensity of sunlight makes it difficult for people living with Albinism to succeed. Hence they are restricted indoors, and almost treated like vampires [except that they don’t drink blood]. The funny part of this assertion is that even those who call themselves stakeholders are the lead purveyors of this very dangerous philosophy.
Now, I have always argued that the State of being disabled means deprivation or want of ability; absence of competent physical, intellectual, or moral power, means, fitness, and the like. Want of legal qualification to do a thing. Then if so, physical disability is the least form of disability. When one is bereft of intellectual and moral abilities, then that is real disability! Disability isn’t deformity.
The Albino’s Dreams, My Story
Continued reports of gruesome violations, killings and attacks against persons with albinism, including children, women, persons with disabilities, and the elderly, remain a deep concern. Persons with albinism continue to live in fear of their lives. Yet the resilience and courage of the survivors of these attacks and the abilities of persons with albinism, and the degree of commitment of those who work for the enjoyment of their rights is heartening. Ban Ki-Moon
Dreams are what make us humans. The fact that it allows us hope for the best, put our faith to test and help us love more when it comes to pass. Oh! Dreams are truly beautiful! Dreams never die! [Now I am going down memory lane, the reminiscence; remember the world famous group Westlife and the track Dreams Come True? This is simply nostalgic for me.
I grew up the 6th of 7 children with my younger brother also being an albino. Thing is, right from my childhood I had always wanted to be different; to be seen and heard. I had wanted to be a diplomat and a Public relations expert. I have spent the last 14 years of my life, leading, volunteering, developing my self as a Youth Leader and advocate, a Master Compere , Speaker and now Writer.
My father taught me never to have pity parties but to always reach within, to be strong despite the storms; he didn’t wait for the government to come take care of me and my younger brother, neither did he treat us differently; we did house chores, went to the market,
My mother on her part made sure I was domesticated. I pounded yam, pepper, tomatoes, ogbono, egusi, palm kernel [akwu, banga] either with the grinding stone or mortar before electric blenders became popular. I hawked pap, yams, plantain, tomatoes, vegetables, and fruits. Yes even during the morning and evening sun. During this period of my life I learned the art of negotiation, bargaining, marketing, salesmanship, organization, pitching, and communication and public speaking skills.
She taught me the art of cooking and as a teacher, she ensured I got a university degree . it’s a pity they both are not alive to see me finish a Masters Degree in peace studies and conflict resolution. What if they had treated ne as an invalid, a cursed child, a child who has nothing to offer? I first developed the idea of studying Political Science from dad. This is because he usually discusses current affairs with me and, he allowed me read papers at a tender age.
Melanin, Sunshine and the beauty of light
People born with albinism can live normal, healthy and productive lives given the right opportunities – but tragically, far too many suffer isolation, mutilation and even death because of persistent discrimination and ignorance surrounding their condition. International Albinism Awareness Day offers an opportunity to dispel the myths that surround these individuals and enable them to exercise their inalienable human rights. Ban Ki-Moon
Light is beautiful. Its luminescence has an allure that connotes safety, strength, security and success. The albino lacks melanin and the sun’s ray may be harsh, but it still does not impede his or her ability to remain beauty both in and out. His dreams shouldn’t be disabled because the sun is harsh on his skin due to an absence of the right pigmentation.
Yes we may be very sensitive to light (photophobia) because “stray” light to enter into our eyes. But then the common misconception that people with albinism shouldn’t go out on sunny days because of the fear of being burnt; they forget that if we don’t go out, we cannot appreciate the beauty of light which comes in the manifestations of the dreams of our hearts. We can wear sunglasses, use sunscreens and umbrellas and be quite comfy outside.
There are lots of Albinos who are breaking down doors, applying their intelligence and intellectualism in making our world a better place, in different fields of endeavour; throughout history Grammy Award winner Eminem; Oxford don William Archibald Spooner; actor-comedian Victor Varnado; musicians such as Johnny and Edgar Winter, Salif Keita, Winston “Yellowman” Foster, Brother Ali, Sivuca, Willie “Piano Red” Perryman; and fashion models Connie Chiu and Shaun Ross. If you accept the gifts that I bear as a person, why reject me, why cripple or out rightly thwart my dreams?
States should also adopt comprehensive strategies to eradicate discriminatory practices against persons with albinism and ensure that they have adequate access to health care, social services, employment and education. Ban Ki-Moon
If you are living with albinism or you know those who are, know that; When you operate from a perspective that defines you by your skin colour as disabled, then there is nothing you can achieve except those with abilities come to your aid. I refuse to accept that I am disabled person simply because I lack melanin. I am not my hair, I am not my skin colour, I am the soul that lives within; I am wonderfully and fearfully made. I can hold my own anywhere. Yes, I AM BEYOND MY COMPLEXION
To those like me, a lack of melanin isn’t a death sentence. What we lack in pigmentation, we abound in intellect! You just have to reach within and discover the talents inherent. Therefore, block out the things that you can not control and stick to what you have power over. Your dreams and the willingness to do; to transform into reality, is within your control.
I may not have achieved all my dreams, but hey, I am living them. This year I set out to achieve certain things and though I may not reach them all, I have told myself I won’t stop dreaming because dreams come true. Yours too can come true if you rise up with a willingness to do, a desire to act against the prejudices, social construct, dangerous perceptions regarding your colour; by turning your supposed doom to boom!
You get in life what you have the courage to ask for. Nancy D. Solomon
Your disability is a product and function of your belief. Snap out of it and live your dream!
“In the end, it is important to remember that we cannot become what we need to be by remaining what we are.” Max De Pree
ABOUT THE AUTHOR
Chimezie Judemary Udechukwu is a blogger, Compere and Creative Director at Peridots Hub. An outfit he just started. He is an albino saturated with a goal to dispel the notion that albinism is a form of disability. He is also on the Management of Value for Tomorrow Initiative VTI www.vtinigeria.org organizers of the International Model United Nations, Nigeria IMUNN www.imunn.org Conference where is Secretary General. He blogs on www.ojisi.com and is viewed by thousands of people from Africa, Europe, Asia, The Americas.
OjisiEmezie as he is known is passionate about changing the world. He believes in the power of young people helping young people to succeed. He holds a Msc in Peace Studies and Conflict Resolution from the National Open University of Nigeria, NOUN. He is a 2016 National Merit Award winner from the All Nigeria Rotaract Multi District Information Organisation NR-MDIO and the overall Best Past President 2016 of Rotaract District 9110 Nigeria.
He was recently accepted in the YaLa Citizens Journalism Online Program for Young Leader from the Middle East and North Africa MENA and Sub Saharan Africa.
He is single but in love.
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