MEET ARIANA
Albinism is a genetic condition where people are born without the usual pigment (colour) in their bodies. Their bodies aren’t able to make the normal amount of melanin, the chemical that is responsible for eye, skin, and hair colour. So most people with albinism have very pale skin, hair, and eyes
Although rare in the western world, albinism is quite common in sub-Saharan Africa, likely as a result of consanguinity. Albinism has long been associated with stigma and superstitions, such as the belief that a white man impregnated the mother or that the child is the ghost of a European colonist.
Oculocutaneous Albinism (OCA) is a genetically inherited autosomal recessive condition and OCA2, tyrosine-positive Albinism, is the most prevalent type found throughout Africa. Due to the lack of melanin, people with Albinism are more susceptible to the harmful effects of ultraviolet radiation. This population must deal with issues such as photophobia, decreased visual acuity, extreme sun sensitivity and skin cancer. People with Albinism also face social discrimination as a result of the difference in physical appearance. The World Health Organization is currently investigating issues concerning this vulnerable population.
Meet Mohamed Osman Kamara also known as Jay Marvel. He is an entrepreneur and advocate for the rights of people with Albinism in Sierra Leone. We were excited to have him share with us the highlights and challenges of his advocacy journey so far.
We were thrilled during the interview when he said he had a consistent gratitude practice where he thanks God for the things he has blessed him with and he writes them down. These includes changes that he has supported to make happen in people lives. As part of his talk- therapy he enjoys having a chit chat with his mother. Mohamed is a creative genius , he destresses by doing recordings with artists and friends- music he says calms him down.
Amazing right? This young man’s enthusiasm to find community led solutions is something we thought we should share with you, in hopes it will inspire you to start influencing positive change from your corner!
JAY MARVEL A BEACON OF HOPE FOR PEOPLE WITH ALBINISM ?
My work has led me to dream and aspire, I am unafraid to re-imagine great things happening for and to people with albinism. Personally, I am working on myself to become a motivational speaker and global advocate on albinism issues, persons with disabilities and human rights issues.
I see myself organizing national events to promote Albinism Awareness in Sierra Leone and the world.
PASSION STEMS FROM DEEP WITHIN
I’m a front line revolutionary of Persons With Albinism in Sierra Leone- someone who is a servant, eye-opener and integrity booster for my community. I try to reach out for support for our wellbeing nationally and internationally to restore dignity to all persons with Albinism.
I am passionate about what I do because I’m a person with albinism and I feel fulfilled seeing and knowing that our needs are met. Especially knowing that our efforts are bearing the fruits of hope, slowly the discrimination against us is reducing dramatically.
ENDING THE STIGMA
SIERRA LEONE ASSOCIATION FOR PERSONS WITH ALBINISM (SLAPWA) has been working on changing the mindset of Persons with Albinism, relatives, parents, neighbours and persons in a society. We are trying to sensitize the public about our existence, letting them know that we are as human as everyone else without mystical powers. Also, we deserve proper health care and our rights respected! Thus with the right support, partners and donors, we can be number one in Africa to help change the narratives of Persons with Albinism.
Right now, we are developing livelihood projects proposals. The funds received will enable persons with Albinism to be self-employed and become entrepreneurs in the future. We will also create jobs for persons with Albinism within SLAPWA. If we have funds for our projects. We also reach out to companies, MDAs, NGOs to employ qualified persons with Albinism in institutions to promote inclusion.
CHALLENGES AND LESSONS LEARNT SO FAR ON THIS JOURNEY
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Lack of financial support. The fact that societal neglect and myths of and about Persons with Albinism are rooted in people.
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Lack of knowledge about Albinism issues in higher places in the nation. Policies specifically developed to promote and protect the rights of people with Albinism in all sectors of life. Mindset (negative, mediocrity) of certain people with Albinism and their parents.
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Exclusive recognition as persons with disabilities and that we should enjoy all the rights in the Disability act of 2011.
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Lack of sun protective gears to make outdoor movement easier.
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Changing the mindset of Persons with Albinism, they should not see themselves as nobody in society.
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Lack of financial programs/ grants for persons with Albinism focus.
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Lack of proper health and educational facilities to best serve persons with Albinism and so much more.
WE CAN OVERCOME STIGMA
I will like parents to know that, we are products of what they sowed. We are precious gifts to them and not a curse.
To persons with Albinism: acceptance, embracing and loving yourself will nullify all negative thoughts, myths and perception about you.
The Government and NGO’s need to provide financial, equipment, learning aids, material support and promote policies that create awareness about and protect people with Albinism nationally, regionally and globally.
Finally, Mohamed Osman Kamara extends his gratitude and appreciation to the Medical Assistance Sierra Leone (MASL) for their support since 2019.
References:
https://kidshealth.org/en/teens/albinism.html#:~:text=Albinism%20is%20a%20genetic%20condition,skin%2C%20hair%2C%20and%20eyes.
https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-6-212
https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-6-212
