Ojisi: OAM Foundation

Ugochukwu Orji: Oh Yes I live with Albinism!

07:46

"Don't ask yourself what the world needs; ask yourself what makes you come alive. And then go and do that. Because what the world needs is people who have come alive.

"Howard Washington Thurman

Hello People!

So I first met Mr. Ugo [as well all in the Albinism Advocacy circles call me] in November 2016, at an evident Onome Okagbare made me attend. Funny enough it was the first time I would meet Onome , and then I met the amazing team; Sussy the taster, Daniel the researcher, Ejike the Barrister, Seyi the creative genius and of course, Esther my Albi crush [I hope she never gets to read this].

So back to the gist, this young man is an embodiment of intelligence, creativity and has a great skill when it comes to project management. We had a conversation and I decided to share this with you on why he is the way he is.

I hope you find his story interesting and that you come to appreciate the nation of the Albino child or the Persons with Albinism [someone once said it is for the sake of political correctness].

Here we go, but before then, this is not a pity party!!!

OjisiEmezie

Early Beginnings, Early Awareness

I was born to a young couple from Isuikwuato in Abia State, south east Nigeria oblivious of my skin colour and environment. I could not have imagined the feelings my parents, especially my mum had on my arrival as I am their first child. I could remember going through school and having to deal with adjusting to classroom activities. I became a 'guinea pig ' as it concerned finding solution to my sight issue; but as a child, all these didn't matter much to me. After me came four other siblings (three out of them have albinism).

Oh yes! I also live with albinism.

In my growing up days, awareness about albinism wasn't widespread especially among us Africans (still work in progress though). As a young lad, I started getting conscious of my skin colour when I heard my peers sing the popular 'oyibo pepper' song. Even at that it still didn't move me. Then came the rude awakening; in my form 2 in secondary school, as it was called then, I started getting derogatory comments from my classmates about my eye movement (nystagmus). Wow! So I had this all this while, I thought to myself. That was the beginning of myself consciousness.

The battle of the Self

Throughout my teenage years, I dealt with self esteem issues, I was very sensitive to people around me. My ears would hear the faintest whispers about me. I was quick to let go of, in my opinion, undeserving friends. But in all these, I found solace at the comfort of my home and family.

I gained admission into the university, my first time staying away from family. “Now life starts”, I said to myself. University environment (University Of Nigeria), as I saw it then, cared less about your existence. I had to struggle with all sorts. Did I feel inadequate? Yes I did. I made personalized adjustments to study. Maybe if I knew what I know now, I would have had it smoother. Eventually, I graduated and had to wait for my NYSC days for it to come.

Finding my Essence, sharing my Flavor

My service year was quite memorable. This was where I discovered my true identity and found my essence. I was given the responsibility of impacting knowledge on secondary school students in sleepy town of Idanre, home to the famous Idanre Hills in Ondo state. Simply put, I was a “Corper Teacher” [a term used in describing serving Corps Mmbers whos primary duty was teaching. I derived joy and satisfaction whilst at it. My self esteem rose to the skies; I became a 'go to ' person for counseling and a role model to many others. I was surrounded by worthy friends who made remarkable impact in my life. I still keep in touch with some of them till date. Post N.Y.S.C, found me in Abuja for work. My standard was set high and I wasn't ready to short change myself. Your attitude to yourself determines what you dish out to others.

Growing In Love with Yourself

From my over four decades experience, life has taught me that self love is the ultimate. As is the case with many people living with albinism, low self esteem has become a major concern. I tell you, as someone in your community, that you are beautiful in your skin. Your soul, created in God's image, is beautiful. There is nothing like ALBINO SOUL. I encourage you, especially my young friends, to endeavor to LOVE yourselves because love radiates from within you to the rest of the world. According to Lucille Ball, “Love yourself first and everything else falls into line. You really have to love yourself to get anything done in this world". I love this quote from Brigham Young, "Why should we worry about what others think of us, do we have more confidence in their opinions than we do our own?”

Right now, I live my dream of serving humanity and carrying out my passion of logistics. The Onome Akinlolu Majaro, OAM Foundation is my God given platform.

Final Words

The term 'Albinism 'is not and should not be considered a derogatory word. It is what it is, partial or total absence of melanin responsible for pigmentation. It does not make you less intelligent than you would have been. Whatever you set your mind to achieve, please follow it through putting into consideration any possible health hazard. My dear friends, I leave you with this quote from Howard Washington Thurman, "Don't ask yourself what the world needs, ask yourself what makes you come alive. And then go and do that. Because what the world needs is people who have come alive."

I wish you all a life filled with self love and positive impact on humanity.

GOD BLESS YOU.

Ugochukwu Gilbert Orji. - Facebook.

@yugogilbert - Instagram.

@ugo_gilbert - twitter.

#BeyondTheComplexion #Albinism #AlbinismAwareness #OAMFoundation #Albinism_Not_Disability #ThisIsMyStory #NoMelanin

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Dictionary Project

Angels Among Men; Mosquitoes or Lions

04:19

Image result for Rotaract club of amuwo main

"If you think you are too small to make a difference, then you haven't spent a night with the Mosquito." African Proverb.

The mosquito is small yet it is popular, perhaps more popular than the Lion, king of the jungle. Tiny and almost invisible to the eye, it is responsible for the death of millions and for the agonizing ill health of many more people; the fear of Malaria which it leaves in its wake, has led to healthy living, especially through the use treated mosquito nets. How powerful can one little insect be?

Many times we take for granted the effectiveness of our being. We sell ourselves short by admitting to failure or even inability to do something without even attempting; hence I always say there is a thin line between arrogance and confidence. Lessons abound in the life of the mosquito.

Every moment in life comes with an opportunity to become better. Every opportunity is a moment to embrace success. Our lives are filled with many moments and opportunities, the seizing of those moments and the exploration and exploitation of such opportunities is what translates to success. Despite their ubiquitous nature, it takes patience and understanding, deep observation and preparation to be able to adequately utilize them, for opportunities can only be seen when we are disposed to the moments.

Image result for images of Dictionary project by Amuwo main Rotaract Club

The grace of God abides fully in us but we must work towards unearthing that grace in us, to truly know that there is nothing small in us. Just like the mosquito, we all need opportunity to show how lethal we can be, especially when it comes to developing ideas that create solutions to the myriad of problems facing our world today.

The dictionary helped me to overcome certain smallish tendencies. It infused in me, and in many others I know; the confidence to aspire to be great. You see, David never saw himself as small hence he was able to defeat Goliath.

This Sunday, February 11, 2018 at the #AngelsAmongMen photo exhibition by Damilola Onafuwa @damilolaonafuwa this fact will come to light. So come join us by 4pm at the Whitespace Creative Agency at 15, Raymond Njoku Street, Ikoyi, Lagos and see what this fine young man has arranged for us with the lower of his photo lenses. This Photo exhibition is in conjuction with the Onome Akinlolu Majaro Foundation , and it promises to be exceptional.

As small as it may seem when you hold the dictionary, (I was used to the pocket sizes with small prints, they now have big sizes with large prints), it contains the key to unlocking the potential of many people especially teenagers as it empowers them with right pronunciation, spelling and proper use of grammar.

This is why we are motivated to do this project. So today at Ojisi,we are officially commencing the opening of donation to the Dictionary Project in partnership with the Amuwo Main Rotaract Club, District 9110 Nigeria. We intend to give out as much as 300 dictionaries to boost literacy in some schools in undeserved communities around the Amuwo Odofin area.

Image may contain: 2 people, people smiling, people standing

Funny enough when we started in 2015, it was just an idea, a little project we toyed with. As it last year, we had given more than 250 copies to more than 10 schools in 2 states . this is our modest contributions to the growth of literacy and the promotion of SDGs4 on education. We are grateful to all our donors and sponsors, many of whom remain anonymous.

This is the 4th edition in the series and it is a project dear to my heart. As we thank the Rotaract Club of Amuwo Main for agreeing to do this with us this year, we are open to working with more partners and sponsors. For at least N2,000 you can help that child transform from the small "insignificant" mosquito to the lion that roars in the jungle. That is the essence of our project billed for March 17, 2018 when I turn 32 years.

Kindly make your donation to Chimezie Udechukwu 6011107999 Fidelity Bank and be sure to get a thank you note and mention [except you choose to remain anonymous].

In 2018, help a student aspire to grow. Gift someone something to spur them to succeed. This is your moment, seize the opportunity!

OjisEmezie

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Creative

Dear Future Wife, Meet The Lady Sarcasmia.

02:46

No one is useless world who lightens the burdens of another – Charles Dickens

Dear Future Wife,

Today I want to introduce you to your biggest fan. Yes. This one can worry me for Africa! Hei! She's been dying to meet you and cannot wait. She is another sister of mine though from another mother.

Nne, 'Mezie m' she's come to always call me. Well, don't be scared for that is how loving and kind she is. She is. Today I have decided to you another of my female bosses. This one no dey let me rest until we get the best done.

Deeply intuitive, highly creative, soft spoken , camera shy yet stunningly beautiful, kind hearted, cool, no nonsense wife and Mother, these are the words that describes Onome Akinlolu Majaro Managing Co-founder of the Onome Akinlolu Majaro Foundation. She is a Unilag and University of Swansea Alumna with degrees in communications.

Babym, it was Khalil Gibran who who once wrote "Safeguarding the rights of others is the most noble and beautiful end of a human being.This statement is so powerful because it also describes what Onome is doing with the |OAM Foundation it is so amazing to see how much we can do when little is done with so much passion and dedication

I first got in touch with Onoms and indeed OAM Foundation when my *Unusual Nnewi Babe*, Joy Oluchi Eneghalu sent me a link to an article she wrote on Bella Naija around June last year. I saw a picture of a beautiful lady with Albinism with her husband and a cute baby. I clicked on the OAM link, it took me to the website. I read through and loved it. I checked them on Facebook and saw the #BeyondTheComplexion campaign.

Around that time I had this interview with Dunn Eustace then Senior Online Editor at Naij.com he had titled the article *Meet the Albino whose impact goes beyond Nigeria* that article trended globally and was syndicated in more than one hundred sites and blog across the world (a simple Google search can confirm).

So I shared the link on the Facebook page, she read, reached out to me via Facebook, requested that I write an article for OAM, I did titled *Sunshine, Melanin and the Albino's Dream of Disability?* that article received rave comments and that was how I accepted an offer to become OAM's Ambassador for PR.

Since then, we have had an amazing experience sharing our stories and helping to change the Albinism Narrative in Nigeria and the world.

Onome and I have become family. Through I have had stronger ties with the members of her family both immediate and extended and together, within the past two years, OAM has done great! From our celebrating the International Albinism Awareness Day #IAAD17, we gave out free glasses to PWAs in LUTH last month.

Come November 26, we shall be premiering #BeyondTheComplexion the first episode of a series of our short film that chronicles the lives of PWAs who continue to defy the odds and break biases, smashing stereotypes. #BTCtheMovie is in partnership with Ada Ossai Productions.

But today, October 25, 2017 is all about Onoms. Today Onome, whose marriage to Akinlolu Majaro received wide media publicity a year older. I have so much to say about this amazing lady who goes all out to make others comfortable. She has continued to defy the odds when it comes to writing a new chapter for Persons With Albinism.

She has given many hope, helped even more to re-evaluate their lives, see themselves for who they truly are, and indeed made many PWAs have faith in themselves again. The late Archbishop Fulton Sheen once said "The difference between the love of a man and the love of a woman is that a man will always give reasons for loving, but a woman gives no reasons for loving." Apart from being beautiful, industrious and enduring, women are delicate, delectable, dependable and of course, demanding. Yes this one can demand for almost the impossible when it comes to designing, planning and executing projects.

Haha!

But you see, when you find the right woman; the true companion, then you truly would understand what it means when the Bible says *he who finds a wife has found a good thing and obtains favour from the Lord*. If na lie ask Akinlolu Majaro But of course, men take their time to find their women, for some the women cross their parts, for others, Providence bring them their way while for a minute few, the women actually work up to them (I love this category).

Onome Okagbare Akinlolu is an amazing woman, an angel among men, one who isn't her hair, her skin colour, but the soul that lives within. She's a wife, a mother, daughter, and role model and mentor to many Albinos out there.

She's won my heart and now I am an #albyactivist.

Image result for Images of Onome Akinlolu Majaro

Onome encourages us to look #beyondthecomplexion because she believes just as I do that Albinism isn't a form of disability; she continues to help many people living with Albinism to thrive better in a world filled with stigmas, discrimination and hate.

I call her The Lady Sarcasmia! Don’t ask me what it means, just enjoy the pictures and say a prayer for her on my behalf. She deserves every smile, good wish you can offer. Today she turns 27! I celebrate this #AlbyChampion and fellow #albyactivist

Happy birthday Madam Co-Founder and Co-Producer!

Cheers to your future!

More pictures

OjisiEmezie

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Albinism

Why She Must Not Tarry in coming. A Letter to my Future Wife.

09:35

"Chimezie, come to the house " that how brief the call was. It was some minutes past 4pm on monday, June 12, a day before IAAD17. I tidied up my things in the library, ate a delicious meal of amala and ewedu with some ẹran wẹ́wẹ́ at one of my favorite amala spots and left for" the house ".45 minutes later I walked into the house and met a delightful gathering of some of the brightest brains I have met. Oge from Ebonyi, Samuel from Anambra, Daniel from Akwa Ibom and Susan from Delta, Onome had flew in from Rivers State too. For more than 4 hours we talked and lit up the home of the Okagbares with our banter and discussions. What did we have in common?

We are all People With Albinism!

Image result for international Albinism Awareness Day, 2017 by OAM Foundation

It is said that globally, 1 in every 17,000 people have albinism. Sometimes just the eyes are affected. Sometimes there is not pigment and hair and skin are white and pale. Sometimes there is some pigment, but not what is typical for a specific race. There are multiple types of albinism, but many more misconceptions about PWAs. Tuesday 13 June was the International Albinism Awareness Day. A day set aside by the United Nations General Assembly in November 2014 to draw more attention to the stigma and discrimination faced by Albinos all over the world especially in Africa. The OAM Foundation co founded by Onome and Akinlo Majaro held a very special event at the Catholic Lay Apostolate Centre in Yaba, Lagos to mark that day.In her opening statement at the event, Onome who is married to Akinlolu said;

Onome Majaro, Co-Founder, OAM Foundation

Albinism is a rare, non-contagious, genetically inherited difference present at birth. In almost all types of albinism, both parents must carry the gene for it to be passed on, even if they do not have albinism themselves. The condition is found in both sexes regardless of ethnicity and in all countries of the world. Albinism results in a lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light. It is by no means a disability or a death sentence. I am a living testament, having blessed with an amazing husband Lolu and a wonderful son, Dele. I also know many other Persons living with Albinism who have risen above the social constructs, biases and stereotypes that exists in the society.

The OAM Foundation which started in October 2015 creates general awareness about albinism to the general public, educate PWAs about skincare and living with albinism, empower PWAs to become better and confident members of society. We organize events such as this, and advocacy campaigns to aid these objectives, we also provide PWAs with skincare products which are sourced from donations.

There is no doubt that People with albinism face multiple forms of discrimination worldwide. The truth is, Albinism is still greatly misconstrued, socially and medically, even by elites. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion. This is the foundation upon which our #BeyondTheComplexion campaign is hinged on. hence, the event featured talks on healthy living, self esteem and confidence building for Albinos and a panel discussion session featuring the Country Director for the United Nations Information Centre in Nigeria, Mr. Ronald Kayanja alonside Teejay an OAP with Unilag FM, Celebrity Makeup Artist Gaje, Ms Sussie an entrepreneur, Onome and a psychiatrist

L-R. Mr. Kayanja, Mrs Rita Okagbare [Onome's Mum], Gaje, Akinlolu, Onome, Teejay, Guest Speaker, Sussie

Again Mrs. Majaro stated that; The 2017 International Albinism Awareness day event aims to address two key areas; the first being self-esteem. It has been observed that a good number of PWAs in society suffer low self-esteem usually resulting from their skin condition. To address this issue, we have a psychologist available to provide guidance and advice on overcoming this barrier which has been a limiting factor for several PWAs. We also have sessions for other PWAs to share their stories as points of inspiration for others to learn from. The second area being addressed is involvement in society; we actually began addressing this issue with empowerment programs and general awareness to help albinos realize that they are a part of society. During the event, we will showcase stories of PWAs that are contributing to society for others to aspire. Towards this day we started an online campaign to clarify the myths about albinism. We intend to run the campaign throughout this month.

The event was a memorable one as it brought together lots of people living with albinism, albino mums and dads, and albino spouses. it was well aired in both conventional and social media. I was privileged as an OAM Ambassador to also anchor the event.

Let me end this piece with a short letter to my future wife.

Dear future wife,

I know the wait won't be much longer but you should please come quickly. If for nothing so that some people can see that persons living with Albinism do get married, bear children and lead normal lives. I trust that when you come you won't join the bandwagon of those who think that person's with Albinism are abnormal people. You see, for me, the question isn't what can I do, but what can't I do especially to make you happy and comfortable.

My love, on 13 June, 2017 we celebrated the International Albinism Awareness Day as approved by the United Nations General Assembly in November 2014 which started in 2015. You know I am Albino and proud to be one because it doesn't mean I am disabled or deformed, it only means I lack melanin which aids pigmentation.

Ụtọ m! People with albinism face multiple forms of discrimination worldwide. Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalisation and social exclusion. This leads to various forms of stigma and discrimination. Such as the question asked if we do get married. in some case bae, Albinos are hunted like prized gazelles.

Nnem, Albinism is a rare, non-contagious, genetically inherited difference present at birth. In almost all types of albinism, both parents must carry the gene for it to be passed on, even if they do not have albinism themselves. The condition is found in both sexes regardless of ethnicity and in all countries of the world. Albinism results in a lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light.

Babym, from family and friends you hear of how great a guy I am with a profound regard for family values. Together we will build more geniuses in our world and show that we are #BeyondTheComplexion yes#AlbinismIsBeautiful we are #NotGhosts and of course#AlbinismNotDisability

I cannot wait to start making babies, cleaning and changing diapers, and also, teaching them to grow in the Lord. Please come quickly. And Oh, I can eat well. I love Nkwobi, so be prepared!

Till I meet you soonest,

Yours in love,

OjisiEmezie