Albinism Awareness: Miklah partners with SNUPA to push for awareness of albinism

Albinism awareness is critical to fight off the myths and negative perceptions around albinism, empower and enlighten those with albinism, and position them for the support they need to achieve personal and communal goals just as everyone else.

It is for this cause that I (Vicent) in the name of #MiklahLife attended SNUPA‘s (Source of the Nile Union of People with Albinism) strategic meeting on using social media for albinism awareness on 21st January 2022. SNUPA is an organization that has dedicated its life to enabling people with albinism access requirements like sunscreen, eye glasses or spectacles, and even long-sleeved clothes and skin cancer screening and treatment.

But that wasn’t our first encounter! Our first, personal and yet official encounter with SNUPA was on 3rd December 2021. The encounter was personal because it is the day we had taken our own Josiah (baby with albinism) to meet his fellows through SNUPA, and also get some of the requirements he needs for healthy living.

People with Albinism simply have low or no melanin in their skin, hair, and eyes, and they usually need sun protection to be able to carry out normal activities outside. . And so when we had Josiah, we had to look out for SNUPA! Below is how it all started!

Partnership for Albinism Awareness: Why and How?

As already highlighted, we got to know about SNUPA when we had our second-born baby boy, Josiah, and found out that he had albinism.

Through a friend, we were shown a family that also has a boy with albinism. In our endeavors to do anything for Josiah and connect him with others like him, we visited the family. Well, the family was amazingly receptive. And their boy with Albinism, Sam, was quiet impressive. We shared a lot, encouraged one another, and laid out more strategies to help our children.

One of the strategies we considered was connecting Josiah to the resources he needs through organizations that cater for people with albinism. And the one organization that stood up was SNUPA (Source of the Nile Union of People with Albinism). Well, Sam’s parents gave us the contact number. We arranged for the visit, and, boom, did it on 3rd December 2021. It was a memorable visit. And Peter (CEO, SNUPA) and everyone else at SNUPA were amazingly helpful.

When SNUPA’s Ogik Peter saw us in union for Josiah (Remember, we had gone as a family, all for Josiah; mom, dad, Jairus, and relatives), he appreciated our zeal and attitude towards our boy’s situation. Having learnt that we also had an organization, Miklah Life, and we were ‘basawo’ (health workers), he hinted on working together with us to push for albinism awareness. I took this seriously, and with gratefulness, for I too wanted to create something much bigger, more helpful, not for my son only, but for all others. We went in for partnership.

To make this a reality, we at #MiklahLife committed to customizing all our initiatives to fully include people with Albinism in a new initiative called Miklah For Albinism. Since then, Miklah Life is officially part of SNUPA’s efforts to create awareness regarding albinism, push for human rights and equal opportunities for those with albinism, and ensure that they get access to all they need to live and work their lives normally just like everybody else.

Albinism Awareness using social media and blogging: Miklah Life’s Meeting with SNUPA on 21st January 2022.

So, on 21st January 2022, we convened to discuss how social media and blogging can be great tools for albinism awareness. In the meeting, we all saw potential in talking about albinism openly and everywhere. We learnt better ways of talking about it too.

For example, people with albinism aren’t called albinos, no, they are better called ‘people with albinism’ or person with albinism or boy or girl with albinism. According to Peter, the main speak of the day, in the former label, the focus is on what they are suffering (albinism), but the person is the focus in the later labels! When the focus is on the person, it is easy to see that he or she is actually a full person just like everyone else. When the focus is on their condition, it is easy to see and define them as ‘creatures’ with ‘limits’ or ‘no limits’.

We will come back to these things or labels later!

Albinism Awareness: What is it about?

Albinism awareness is possible for everyone. All one has to be and do is understand that albinism isn’t a cure or anything peculiar, but just a biological (genetic) condition like others. In this case, people with albinism are full humans with full potentials, but with no melanin or little of it in their skin, eyes or hair. For this, they need sun protection to carry out their normal duties.

Our fight is to see them get accepted for who they are, be catered for as we cater for other people’s needs, get equal access to opportunities and education and healthcare, and live their social lives to the fullest. Why? Because they are just like everyone else! Will you join the fight? You could partner with us for bigger impact or donate to us so many more people with albinism get all they need or just participate in some activities aimed at uplifting the lives of those with albinism. Check out more ways of getting involved at www.miklahlife.com/albinism

God bless you