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In Our Skin, We Win: #AlbinismAwareness

Today, June 13 2024 marks the 10th anniversary of International Albinism Awareness Day (IAAD). This year's theme is 10 years of IAAD: A decade of collective progress.


I had the esteemed pleasure of speaking with members of the albinism community this week, and here are some basic facts they have asked I share with you all:


Basic Facts of Albinism to be a Smartie!

  • Albinism is a rare condition that is inherited.

  • Albinism is not contagious.

  • People with albinism have less of a pigment (or color) called melanin in their skin, eyes and hair.

  • Albinism has nothing to do with the devil or a spirit or with special powers (for good or for evil).

  • People with albinism are not blind, but vision impaired.


"My journey with albinism has been a mixed feeling growing up" - Hamid Mo-Kamara.

"My journey with albinism has been a mixed feeling growing up..." Hamid tells me. "I was discriminated against severely and I have used my story to spread awareness of albinism and love."


"Growing up in my community, some of the misconceptions I have been subjected to over the years are spiritually oriented".


He laughs.


"People believe we are immortal and superhuman which obviously isn't true. These are just some of the things I faced growing up. However now I can say I have been accepted due to the different roles I play: I am a writer, a developer and a social activist."


Me: Tell me more about your role as an activist.


Hamid: I used to be the programs personnel at the Sierra Leone Association for Persons With Albinism (SLAPWA). I helped secure funding from the United Nations Development Programme (UNDP) to support our activities which have been going on for the past 5 years. We also have other support from Lancaster University in the United Kingdom and other organizations over the years.


Me: As a student, I understand you are entitled to certain amenities on campus under the Disability Act of 2011, please touch on this.


Hamid: As a student, fortunately I have not faced any discrimination on campus, I would like to believe that this is largely due to the act that protects us. We are also entitled to free tuition and services on campus.


"Through our advocacy, we approached Statistics Sierra Leone to include persons with albinism in their records of people with disabilities. Thye weren't even aware that we fall under persons with disabilities. And I can confidently say over the years the discourse and awareness has been increased across Sierra Leone. But of course there is always more that can be done and will be done." - Hamid Mo-Kamara.

Me: In regards to sunscreen and glasses, how do people with albinism access these essential items in Sierra Leone as they are expensive?


Hamid: This is something that we foresaw and ensured at SLAPWA we distribute sunscreen free of charge. The sunscreen we use costs nLe 430 and that isn’t accessible to the average Sierra Leonean, let alone one with albinism. For my glasses they cost nLe 8000. We support with eye care.


Me: What is your message to Sierra Leoneans on IAAD?


Hamid: We are human beings just like you. Debunk misconceptions and be allies.


Hamid is a consultant that offers services in writing, training, project management and more. To work with Hamid you can contact him at +232 31 916 956 or nathanconsults@gmail.com


“There are people who believe persons with albinism are better in bed which subjects us to extreme forms of sexual and gender based violence” - Daniella Garrick.

“People see albinism first before they see me. Some people are very comfortable calling me “albino titi” or the dreaded “joos” rather than learning the correct term - person with albinism or simply my name; Daniella”.


Me: As a model and ambassador of SLAPWA, how do you use your platform to spread awareness of albinism?


Niella: I debunk several misconceptions and myths firstly. People believe we are supernatural, we are not human etc. I have heard it all. They believe that certain types of food we eat ruins our skin which isn’t true. The only thing we should be aware of is the sun as the ultra-violet (UV) rays are very hazardous for us.


“There was a case in a community I was assigned to that a man was preying on a 14 year old child with albinism. He was the top up guy and the girl was sent by her father to buy top up. The guy started sending messages to the phone not knowing it was the dad's phone and he was sexually harassing her claiming she is "indebted" to him and he should fulfill a sexual promise. The parents went to report him to the police and his parents but unfortunately he ran away. It just goes to show that pedophilia also exists and happens to members of our community."


Me: In terms of media representation, what is your take on the visibility of persons with albinism and who is your role model in the community?


Niella: I would say representation has really increased which is fantastic seeing people like me in the media. My role model is Diandra Forrest who is an African-American model with albinism.


Me: How have you grown as a person being an activist and ambassador for persons with albinism?


Niella: I have grown immensely. Growing up I was so shy because of my albinism. And never imagined I would be an activist. I am now the youth spokesperson for the persons with disabilities in Sierra Leone.

Me: What is your approach to the language used to address persons with albinism?


Niella: I try to keep an open mind and think of it as an opportunity to educate and mentor. Sometimes when walking, there are boys who place bets if I’m white or a person with albinism. They then come up to me and ask — that’s a learning opportunity. I correct those who refer to me as “joos” and they’re generally receptive.


“You’ll never catch me unfresh. So you can’t talk to me or address me anyhow”.


We laughed.


“I think representing yourself well also helps with advocacy and the way you’re perceived.”


To catch up with Noella and her freshness, follow her on Instagram @niella_rik


I had a brief conversation with the director of SLAPWA - Mohamed Osman Kamara and this is his message to Sierra Leoneans today:


“We are all human beings and we all should and must be treated with respect and dignity. Irrespective of your looks - treat others the way you would like to be treated. Let’s share the love. Come to our office, we have so many informational pamphlets we can share with you and you can share with others.” - Mohamed Osman Kamara.

(picture from left to right: Niella, me and Mohamed)


Be an ally and supporter of the great work of SLAPWA. They can be contacted on +232 76 463 599, +232 99 353 368 and slapwa.sl@gmail.com


 

To feature your international day or event, contact me at info@minabilkis.com

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