Albinism is Never a Disease or Disability’.


By Chinyere Okoroafor — June 12, 2019

27-year-old Madubuonu Stephanie Onyinye is a person living with albinism. The preschool teacher speaks with Kehinde Adegboyega on challenges facing them in commemoration of the United Nations’ International Albinism Awareness Day celebrated on June 13 to fight for rights of persons with albinism. Excerpts:

What is your experience growing up with albinism?

Being the second child and the only one living with albinism wasn’t as challenging as most people would think because I have the love of my family.

Will you say it’s because you are ‘privileged’ to be born with a silver or gold spoon?

No it’s not even close to a silver spoon. My family is something I’ll call a struggling average kinda background but we were happy.

OK, which part of Lagos did you grow up?

I grew up in Ikotun and attended St Saviors High school. I went to the best schools my parents could afford and was given the best skin care even though they were misinformed but it helped.

Talking about skin care, which seems to be a challenge with living with albinism, what would you advice Persons living with albinism and their parents?

Skin care routine is something parents of persons living with albinism should actually take seriously when their children are much younger. Routines like eye checks, good moisturizers, sunscreen, protective clothing and hats. Lots of water intake and eye supplements if necessary.

Are these cares affordable for poor parents especially with the present high rate of poverty?

Albinism is just a condition and not a disease as most people would think. It should not limit you to be whatever you wanna be. Yeah, sure these things can be substituted. Hats, umbrellas and protective clothing can replace sunscreen, As long as the child has just a little or no sun exposure.

And the moisturisers? Do you think there is need for advocacy on how to make this more affordable for people living with albinism?

Yeah sure but I think sunscreen is more important and should be affordable for the less privileged persons with albinisms.

And how do you balance protecting your skin in a hot weather when you need to expose your skin for more fresh air?

I rarely go out without a sunscreen on because as little as the sun ray reflection is, it is as dangerous as the direct contact with the sun. Hence you might think it’s safe but the effect comes much later with a reddish scar.

As for me I wear whatever I’m comfortable in. I don’t limit myself to certain cloths because I love fashion but I’m always conscious of my skin hence I generously apply sunscreen on the exposed part

How much does an affordable sunscreen cost for a month for the less privileged?

There are actually different companies producing sunscreen and they vary in price and SPF levels. So It’s depends on how often one is actually being exposed to the sun.

Okay. Does living with Albinism affect choice of career, way of life and employment opportunities and do you think people living with albinism are discriminated against in workplace in Nigeria?

Yeah the stigmatisation cuts across many sectors hence employment is not left behind. Most times we are judged even before we get the chance to be tried.

When we can easily be allowed a chance to prove our capabilities and intelligence we are hastily dismissed with the notion that our low vision could obstruct our effectiveness but I often smile at how I awe people with my performance when given the chance to.

I enjoy making a lasting’ statements’ and watch how the event unfolds. I always try to reach out to Persons with albinism any way I can. I actually dedicated my Instagram handle @albinism_publicist to this course and I’ m using my modeling career also to give voices to persons with albinism here in Nigeria

Ok. Well done. Have you heard about people with disability bill? Do you think people living with albinism should seek protection against discrimination with that bill?

Well, I don’t see albinism as a disability so I won’t subscribe to that.

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I’ll rather government supports foundations to assist the less privilege ones with the essentials needed

One of the discrimination that the bill tries to protect against is discrimination against people against their sights. Do you still think people living with albinism can’t seek protection even when they are discriminated against because of their sight?

Yeah if it will improve acceptance in work force sectors that will be awesome.

Why are you into modeling?

Apart from its being something I’m passionate about like my teaching profession. I see it as a tool to redefining the underrated beauty of persons with albinism, giving voices and acceptance to persons with albinism.

Are you presently signed to a modeling company or freelancing?

I’m signed to Exquisite models international but I’m looking for bigger agencies.

Will it affect your 9-5 job (Teaching job) or you are will to go modeling full time?

I’m shuffling both actually because I have huge plan of bagging a Montessori teacher’s diploma certificate and owning a Preschool afterwards.

When and what was your first experience with modeling like?

Even though I just started, my experience with Exquisite models international has been amazing. I look forward to greater challenges because I’m ready for the camera. I look forward to a big modeling platform that will explore me and unravel my beauty and creativity.

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