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Introduction 

Meet Nomthandazo Nkomo from Pretoria (South Africa).  She is a teenage girl living with albinism.  She wrote this article for a school presentation as September is Albinism Awareness Month.

Family Background

Growing up around family members who have the same condition (both my parents and my brother live with albinism) as I do has always been something I held close to my heart but after a few years on this earth, I realized that I was seen as a foreign creature.

World View About Albinism 

The world is a place that never seems to get better.  Sometimes I wonder what our ancestors fought for back then and if it was worth it.

Being different is not always a good thing. My skin, eyes and hair lack melanin, worst case my eyes cannot be still and no one is really bothered about this.  

Don't even get me started about the stares of others as confusion is painted on their faces when they come across us.  Something that is mistaken in today's society is that albinism is a condition, not a contagious disease.

Having albinism also means that I can't go to specific places around the world because people with albinism are still killed for their body parts for rituals.  As a girl, I am still vulnerable to many issues and being a black African girl living with albinism still feels like war.  

School Journey 

One memory still lingers in my mind of the time I was a small girl, excited to start my first day of school, only to notice that the other children were acting strange and distant towards me. In the end, I made a few good friends but one of the girls I was friends with started distancing herself from me. I asked why and she said, "My mom said I can't touch you or else my hair and skin will look like yours."This was the moment when I realized that the world hates different.

Throughout my school career, it was and still is a struggle to navigate when topics of race would be brought up.  I knew the question "Are you white or black" was going to pop up. It was hard navigating these types of questions especially when they had no idea about albinism.

Teachers didn't make things easier either, the number of times I had to beg them to remember the A3 papers I needed to see the questions so that I am reasonably accommodated in class.  I could have complained, but after a while, I decided to resolve the problems myself instead of waiting for my parents to take action. I hated the way it affected me and I completely lost passion for some subjects. 

I am at high school and I am enjoying it.  The teachers are better and understanding, I can ask for assistance and I will get help.

Lingering Questions 

1. When will the world finally see our struggles?
2. When will the blazing sun stop searing our skin?
3. When will others stop touching my pale skin?
4. When will parents teach their kids about us?
5. When will the world show us kindness?
6. When will the world hear us?
7. When will the world see us?

My Hope For The Future

This is the time the world changes.  Having a day when the world sees us and hears us is a day that we can rest from all the torment the world has put us through. All of these battles have taught me that Albinism is not a condition to be ashamed of but rather to be proud of.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Meet Pastor Rabie

Introduction

My name is Rabie Titus Shilakoe known as (Pastor Rabie) from Jane Furse (South Africa). I am a last born of six siblings, the only person with albinism in the family which is amazing as I am a gift from God.  I am passionate about Christianity, I love God and I live my life for Him.  

I went to Siloe School, close to Polokwane for primary school.  Thandi and I met there as class mates.

Fatherhood

I have a 9 year old daughter.  She does not have albinism.  I raised her from the toddler stage which began with clinic visits as her mom and I are separated.  

At about 5 years she was very curious about how daddy looked like but she enjoyed it as she would brag to her friends that her dad is white and he is also a Pastor.  Lately she calls me Moruti (Pastor).  

We have a beautiful father and daughter relationship.  Whenever I call her before we hang up she came up with the rule that her younger sister should hear my voice so that she can also feel and experience the love she receives from daddy.

Life's Challenges

Family:  Growing up being the only person with albinism gave me too much attention and a lot of supervision from my family.  My daily questions or instructions were: "Did you put on your sunscreen?  Where is Rabie?  Don't forget your hat".  My every movevwas watched at close range.  Yes I was young but this irritated me a lot.

Family gatherings:  Extended family members did not know how to associate with me,  I struggled to fit in.  It always felt like I have to explain myself about my condition all the time.  This has put a lot of strain on my emotions because people are supposed to be understanding family members.   

Polygamy family set up:  My father had two wives, my mom was the younger wife.  I did not understand polygamy dynamics.  At some point I stayed with my dad and the first wife's family.  I felt excluded in that family.  They gave me a room outside while all the children had their bedrooms inside the main house. They would always pass sarcastic remarks which made it clear that I am not welcome in their family.  I only felt safe when my father was around.  

Integrating into the community:  I grew up in boarding school and the community was not familiar with me as they would only see me during school holidays.  People would always call me names but I would always laugh it off or disagree with what they called me as my mom gave me guidance on how to handle these encounters.  I found ways to diffuse the insults. I always participated in community activities like soccer, parties and other events.  Eventually they warmed up to me.  

My Victory Moments

We all know that people with albinism are looked down on.  This made me take good care of my skin and physical appearance. With time I have also learned to build my confidence.  I always speak life and believe in everything I want to achieve. Adding to that I give my best and have no room for self doubt.  

The wisdom and strategic approach I have learned, have opened great doors for me as follows:

Ministry:  Besides being a Pastor at my home, I also receive invitations to preach at different churches.  Even in our neighboring African countries.  I have preached in church gatherings with more than 500 people.

Mining Industry:  My company is contracted to service few mines.

Property Investments:  I have observed my property portfolio growth.  

Closing Thoughts 

I would like to encourage everyone with albinism to challenge themselves to do great things in their lives as we are changing the narrative and moving away from the old mindset and myths.  After all God has created us to fulfil a purpose on earth.

Please take care of your skin as albinism is beautiful.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Meet Matsatsi

Introduction

My name is Matsatsi Semomo from Pretoria (South Africa).  I am a bubbly lady, full of energy and a go getter.  People describe me as "if never giving up was a person, that would be me".  

Growing up as the only child with albinism, I decided to do a research out of curiosity to see where these gene comes from. I was amazed to find out that I was the first and only one in the family.  I was a blessing to my family.  I have never let albinism to define me.  

I did not go to a special school as my mom did not want me to feel different from the community members.  

Boy Mom

I am blessed with three boys, my  first is a set of twins, then I had their brother.  I consider them to be triplets because they are 18 months apart. They do not have albinism however I still dream of a baby with albinism.  

School pick ups and drop offs become very interesting as other learners would expect a brown skinned mom to my boys. I am grateful that they are not mistreated for our skin tone differences.  

My boys do not fully understand the albinism condition however they embrace my uniqueness. This is their definition of albinism: when mommy was sleeping, we painted her white, gave her red hair and green eyes so that she is unique for us.  Talk about a creative mind from a child!  I find this cute all the time. They protect me and give me a lot of care.

Challenging Moments

Mockery at school:  Growing up with albinism was very challenging especially in primary school because some of my class mates would mock me since I had to sit in the front row for me to be able to see the chalkboard. They did not understand why I wore spectacles.  As a child wearing spectacles was challenging because of all childhood activities, sometimes I would forget or drop them and they would break. That meant my parents had to pay more for a new set.

The mockery and bullying made me cry a lot, it affected my confidence and self esteem until my mom sat me down and made me understand that she will not be there all the time to fight my battles. That was the day I decided to stand firm and leave the stigma attached to albinism alone.  I found myself.   

Sunburn: I had a friend who enjoyed peeling my skin after sunburn.  She would always ask me if it's not painful as she peeled the dead skin off.

Work place: People at work do not understand my condition (the low vision), I normally get questions like why am I too close to my monitor? 

On the other side I think my current employer tries to accommodate and understands the needs of employees with disabilities. They provide assistive devices to make work easier and when you work on site they provide sunscreen.  I had the biggest monitor in the office and my colleagues would always tease me for having a TV at work.  

Driving:  When I drive in the direction facing the sun, the sun blinds my eyes and it always feels like a  flashlight has just been put on which is destructive in many instances.

Moments Of Victory 

At school I used to participate in academic activities and I always won in those activities.  This gave me positive attention from the entire school. Ooh I love attention!

I studied Bachelor's of Business Administration, despite all the challenges I faced at university, I managed to complete my degree on time with 13 distinctions. This helped me secure two permanent employment positions and it also boosted and advanced my career path.

Last Thoughts

It is a blessing to live in technology times as information is everywhere if searched properly.  

Another great thing is that our government assists our albinism community with disability grants (CLICK HERE) and sunscreen.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Friendships

Struggling to make friends in the community

My grandmother asked my mom to take me to boarding school so that I am safe and protected from the community.  This meant that I would spend about three months away from home.  The community knows me but I hardly know anyone at home, this hurts because I am a social person.  It became challenging to make friends at home and integrate into the community.  My friends at home were my cousins.  I got to make other friends at university and at the workplace.

Words from Tracy

"I met Thandi in January 1999 when she came to Prinshof School.  She walked boldly or rather should I say she skipped up to me, gave me a hug and told me we will be friends forever.  And that we have been since that day.  We have stood by each other through everything, good and bad.  We are truly soul sisters.  I know I can call her in the middle of the night and she will stop everything for me and the other way around.  Our bond is so strong that the Holy Spirit won't leave me alone until I reach out to her.  Thandi has a heart of gold and the ability to love without boundaries.  

My fondest or should I say our fondest childhood memory is sitting in my room in Jakaranda Hostel sharing a packet of BM biscuits that my mom had packed for us for that week.  

The future still has a lot for us especially watching Reece (our son) grow up and us as his guidance, he is bound to never have a dull moment in his life".

Words from Lethabo 

"Meeting Thandi at work was a truly enriching blessing. Getting to know this remarkable person living with albinism not only broadened my perspective but also played a part in my personal healing journey. Thandi is a breath of warmth and energy – loud, helpful, and radiating confidence. Her uniqueness was palpable and inspiring, showcasing a strength unhindered by anything. Despite our contrasting personalities, mine quiet and shy, hers loud and bubbly, we found a great balance. 

In friendship, Thandi is fully present and nurturing. She finds joy in lending a helping hand, even when it's not always received as she'd hope. Observing this helped me reciprocate the same love, energy, and kindness she gives her friends. Thandi knows how to hold her friends' hands through trouble and through joy.  A lot can be said about this beautiful gentle giant". 

Message to Tracey and Lethabo

When I met the both of you, it was love at first sight.  I am grateful everyday that God allowed us to meet.  Thank you so much for sisterhood and for holding me through all these years.  I love you girls everyday.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

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