Personal Development

Self Work

Working on personal development doesn't have to end at academics or at the workplace because it is a continuous process and one should always strive to be a better version of self. 

There's a few traits I have pondered on enhancing because with time I have seen the negative impact they have on my mental and emotional well-being.

1. Learning To Receive 

Growing up with my grandmother I observed a giving and a caring person. Giving to others is my way of expressing love to them (family, friends and colleagues), it just comes naturally.  

The opposite side of this is that I have struggled to receive anything.  Sometimes it feels to me that the person could have used the money elsewhere.  One day my mentor wanted to send me a gift, silly me!, I wanted to pay for the courier fee. She went right ahead to gently remind me of the self work the both of us are doing.

Now that I am opening my heart to receive, I am receiving meaningful gifts, getting to appreciate the generous givers in my circle and I am now aware that I am worthy of the gifts I receive although this is still work in progress.

2. Overthinking 

I am naturally a fixer of other people's problems. Thandi always finds a solution and this has led me to forever lingering thoughts. At points I struggle to fall asleep because I just think and think.

At one of my dental appointments, my dentist asked if we could have a discussion about something that he noticed inside my mouth. He pointed that he could see that there's a perfectionist in me and he sees this because people who grind their teeth are people who always work very hard and as a result of this my teeth are becoming eroded. I found this to be very interesting because how are my eroded teeth linked to my unstoppable thoughts.

To work on the overthinking I purchased a book titled "The Battlefield of the Mind" by Joyce Meyer. I must say it has helped my busy brain to calm down.  Every chapter gave me something to work on.  The best part is that it has biblical references that address a particular mental challenge that a person may be facing.

Parting Thoughts 

Dear reader,  what are you struggling with? I would like to encourage you to take time out and reflect on personal things you would like to improve on. Please take care of your mental health. I wish you healing. 

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

Hear Us

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

 .

A Second Chance To Life - Part 3

 

After Effects 

I couldn't fall asleep because as I closed my eyes every night the scene kept on replaying itself. I would literally hear the smashing of glasses to a point that if a glass broke in my hands I would start crying. Lack of sleep resulted into fatigue as I struggled to sleep for over a month.  I then began my healing journey with a therapist.

Harassment From The Couple 

Few days later I received the first call from the wife asking me to surrender to my insurance company so that they can assist them with fixing their car as their insurance cover fell off because they missed a few payments. 

My response was I don't know how you two as a couple advised each other that it's ok not to have an insurance cover for your car, I am lying here with nightmares every night because of your actions.

I received a second call from the husband threatening me that they know where I live, if I don't assist they will wait for me at my gate. I told him to do whatever he wants with his wife and their threats are very shallow. Honestly I was very scared as I hung up.

Peace Of Mind

I phoned the consultant who was handling my claim, she calmed me down and assured me that the Legal Department will deal with the issue and the couple will not call me anymore. Indeed that was the  last call I received from that couple. Peace of mind and rest started sinking in. 

My claim got settled and I got blessed with new wheels.

Please read A Second Chance To Life Part 1 CLICK HERE and Part 2 CLICK HERE on these links.

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

A Second Chance To Life - Part 2

 

I Am Right Behind You Sis

I heard a knock on my window out of a sudden! I am locked in and cannot do anything.  This happened to be my younger sister who followed me without my knowledge. Aah the grace of God is sufficient for all of us. 

It still beats me how breakdown trucks instantly arrive at the accident scene, sometimes it feels like they have been waiting for it to happen.

Blue Lights And Red Lights

The police and the ambulance arrived few minutes apart. Swimming in a lot of confusion, I just said to my younger sister please take care of my limited edition yellow  Adidas running shoes because the  car boot was filled with shoes.

They loaded me into the ambulance and asked me to try and breathe. At some point they asked me to  narrate the story and tears were just running down my face.  We got to the hospital for further screening and body checks. I got released the following morning as I had minor injuries.

Endless Phone Calls

A lot of people called to ask if I had anything to drink (alcohol) prior my trip and why did I drive in the evening because of my eye condition click here? This was very painful to take in because why would I consume  alcohol knowing that I am going to drive and I am very careful person.  Adding to that I thought there is no set time for an accident to happen.  I stopped talking to those people for my mental health.  

From that evening I couldn't fall asleep because the accident scene kept on playing over and over in my mind.  I then made a decision to seek professional help.

Please stay tuned for Part 3. 

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

A Second Chance To Life - Part 1

17 April 2014

It's my birthday right! And yes I am a celebratory person, I bought the biggest cake and invited everyone on Floor 26 for a slice. The atmosphere was filled with joy and warmth as I wished for it. After cake sharing we all left the office as my birthday fell on to a long weekend and we usually got the afternoon off to allow employees to travel home and to spend quality time with their families.

Plans For The Weekend Baby!

In the morning I had a chat with another friend to check if we could travel together and that plan did not materialize.

I drove home to drop off stuff as this was enroute to my destination and also gave my younger sister money to buy my nephew a cake since we are twins.  I left home and continued with my journey, looking forward to an exciting weekend ahead since this trip was planned months ago. 

Sudden Turn Of Events

As I drove somewhere in the bushes, singing along to Robin Thike because I am a big fan of his music I got involved in a car accident. All happened too fast, at that point all I saw was a flash of a very bright light in my eyes.  This was accompanied by a hot clap from the airbag. What echoed in my mind were conversations we always hear from our male friends on how to swerve the car dunning an accident, unfortunately this could not happen.

I remember praying to the Lord, I said "Father if it's your time may your will be done. If I am getting another chance to life, may I please walk out of this with less injuries that will not take forever to heal".  I reached out for my cellphone to call my older sister to inform her about the accident.  She just started praying while I cried so hard from my end.  I heard somebody knocking on my window and trying to open the door.  This was my younger sister who followed me and I was not aware.

Please stay tuned for Part 2.

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

Feedback Time

 

                               

How I Met Alfred

Alfred joined our department in 2014.  He has a very bubbly personality which made it easier for him and I to connect.  I would ask for his assistance when I needed an extra colleague to assist with one of my work deliverables.  The more we spoke,  the more I got to realize that we both love education and he would always encourage me as a black woman to study further.

Feedback On Learnings 

Since I started blogging in March 2024, Alfred and I would interact on my published blogposts and he would ask for further information in pursuit to understand albinism.  On one of our interactions, I asked him how he found the information and below are the key things he provided feedback on:

1. "Hey Thandi, the blogs have taught me a lot about challenges people with  albinism go through. 
2. I never knew the reason why you would use a large font as a lot of us have been sending you emails with small fonts without understanding your eyesight challenges. I am happy I worked very close to you and through reading I learned about your reason for moving from Alberton to Pretoria for you to find a coping mechanism for your eyes and that there should be balance in your life as well as work activities.  Your resilience at the workplace has shown me that you are mentally strong as no challenge kept you down. 
3. I have learned about your academic challenges but you still pulled through.
4. I watched the movie "Can you see us" with my boys and I could discuss albinism with them. Rorisang even asked why are people so rude and discriminating against a child of God. 
5. I give thanks to your mentor for the support and guidance she gave you through this journey as I have found the blogs to be very informative and didn't seek pity or show you were a victim but a Survivor".
   

Note To Alfred

Dear Alfred, thank you so much for the loud laughter you always blessed us with on Floor 26. Thank you for giving me hugs and literally picking me up.  Thank you for keeping in touch although you have left our organization.   I wish you prosperity in your new career chapter.

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

My Mentorship Journey

Mentoring Sessions

I enrolled with Mrs. Ntombi Malatsi on one of her mentorship programs.  The sessions were awesome because she accommodated me with regards to my short sight especially when I struggled to see other colors, graphs and small fonts.  Our sessions were very personal to me, time and again I would deviate and talk about everything.  

One day she asked if I would be keen to share my life experiences through blogging as she picked up that I faced a lot of challenges at the workplace and that people will learn and understand the dynamics of albinism and how to treat people living with albinism.  

I said yes to the learning opportunity because I enjoy writing and knew that through the blogposts I will educate other people.  The blogging has brought a lot of emotional healing within me and it has also opened an opportunity for me to offer advise and guidance to parents and other people living with albinism.

Feedback from Ntombi 

Ntombi sent a voice note (voice notes are the order of her day) to provide feedback on what she has learned with regards to my albinism experiences as follows:

1. "I learned how to use the correct term for people with albinism instead of calling them albinos.
2. I know that there are eyesight challenges because you would request to zoom your screen in our mentoring sessions.  Further to this I thought that we can all go to an optometrist and get prescription spectacles as I am short sighted too.  I got to understand the depth of your eye sight issues.
3. I didn't know that albinism is classified as a disability.
4. I become sad most of the times when I read your blogposts especially the social spaces posts.  I always wondered why I never came across a person with albinism at the gym, now I understand that you went through a lot of staring which resulted into you withdrawing from the gym.  Another incident that hurt me was when you were chased out of the taxi because you have albinism.
5. I am so glad that you are a very optimistic and courageous person and that you have opened yourself up to us and never allowed your daily challenges to stop you from what you want in life.  This allows us to feel free and have all crazy conversations with you.
6. I now know better and how to relate and treat people with albinism through your life experiences."

Message to Ntombi

My dearest gorgeous mentor, thank you so much for being such a great support structure in my life and my personal growth.  My life has changed for the better in the short period since I joined you.  I truly appreciate you.

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 Baby Lwazi

Technology Made It Possible

My journey in blogging began in March 2024.  After publishing I would share the blogposts on other social media platforms.  Some Sunday morning I received an inbox from Thuli Baloyi.  The message was to enquire more about albinism because baby Lwazi lives with albinism.  This warmed my heart as the intention was to raise more awareness and my blogposts did just that. 

Thuli's Journey 

"My journey in the world of albinism began on the 31st of January 2024. It was the happiest day of my life when my son was born, yet it was the scariest when it was brought to my attention that he was living with albinism.

I was in complete shock! I had too many questions without answers. This varied from the uncertainty of how I was going to deal with his condition, how his father was really feeling about it, how family will receive him and the community in general. Honestly; I was petrified!

This is my first close encounter with albinism so I had no information about it at all so you can imagine my fears.  Lack of knowledge about the whole situation made me very uncomfortable since I was in an enchanted land.

I searched online to find out more about albinism, what it is and what it means. I did not find much information moreover it wasn't information that I could interact with."

Finding Aunty Thandi

"One fateful day while scrolling through social media, I came across Lebo Grass post about this lady with albinism and encouraged people to follow her blog. I jumped at the opportunity and lo and behold! I had found my holy grail.

From following the blog, I have come to understand my son's skin condition better. I know the importance of keeping him hydrated and using sunscreen. Before the blogposts, I didn't even know about after sun lotion or gel.

I understand that my child will encounter vision challenges, so I have already started giving him proper care by visiting an ophthalmologist. I have also learned how to properly dress him to protect him from the sun.  Most importantly, I have learned to accept that my son is not different from my other children."

Note From  Aunty Thandi To Baby Lwazi

Dear baby Lwazi.  It is indeed a great time to be alive because albinism is no longer a subject discussed behind closed doors.  I believe that mom and dad have all the tools and means to care for you, including available information and Aunty Thandi on text/call for support.  I know that you are going to prosper in life.  I wish you well and I love you my boy.

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

Social Spaces - Part 2

                                                                         

Traveling the World

Travel runs through my veins because I get to experience other cultures, meet new people and explore adventurous activities   I have travelled to a lot of African countries.  I mostly travel alone and get to meet the groups at the destinations.  

I have never struggled on my own in an international airport. One thing I truly appreciate about international airports is that their signage is visible both in print and color however if I cannot  see anything I am never scared or ashamed to ask for assistance at the information desk.  

Game Drives

Visiting the game parks can be all fun and games until we embark on a game drive journey.  The drives become a little challenging because of the animal colors and forestry color changes with different seasons.  Imagine a giraffe is standing next to a tall brown tree or its time for seasonal change and the grass is not so green anymore.  Yes the bigger animals are visible but my preference in this regard is visiting a lodge where animals freely roam around and bless me with their presence by my window. 

Visiting a church for the first time

When this announcement is made "may all the first time visitors please stand because we want to welcome them to our church."  I always skip this part because I have observed that whenever I visit for the first time, I am mostly spotted because of my skin color.  I normally ask the ushers (in smaller churches) to sit in front so that I am closer to the screens as I love singing along during praise and worship. 

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

Short Sight And Technology

Paper Based 

Back in the 1990's when I went to primary school all I knew was reading books that had a large font to accommodate my eyes.  We used to stand in front of a black chalk board and the teacher would use a white chalk for visibility. A magnifying glass or sheet would be used to ease the strain that came with a lot of reading.  Another great teaching method was to have smaller classes, this way all learners would get the required attention.  

I then went to another school (secondary school),  two learners would share a tv monitor/screen which the teacher used as a method to deliver lessons.  It felt great to receive a lesson while seated.

Technology Progression 

Short sighted people do not suffer too much anymore thanks to technological advancements.  Our eyes get a relief through the following tools:

1. Documents can be downloaded and shared in PDF for our consumption.  This helps a lot because I can pace myself so that assignments are submitted on time.
2. The use of JAWS program in the workplace which also accommodates blind people.
3. Audio books can also be purchased and listened to.

Positive Impact

The evolution of technology has really impacted my life in these following positive ways:

1. Magazines were paper based and printed in small font which was a major struggle because I love reading and being up to date with current trends. The fact that I can subscribe or read online feels amazing.
2. Google Maps and other driving apps does the talking and directing because street names are not visible.  This assists with driving comfort as my eyes cannot multitask on the road.
3. Great camera pictures:  If the price or the menu is invisible, I take a picture with my phone then zoom in for better visibility.
4. Most fast food outlets have introduced a self service option.  The menu and prices are more visible and easy to browse through.

Acknowledgement 

Dear Sphiwo Xaba, I want to thank you for your views and contribution on this blog post.  I know that you love the way technology keeps on enhancing for our lives to be better.

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

Skin Care Awareness

Sensitive Skin

We were taught to avoid the sun at all cost in primary school between 11am and 3pm (South African time) because the UV (Ultraviolet) radiation penetrates deep into the skin.  If one spends too much time in the sun without sunscreen and a hat, there will be long term implications on the skin.  When sunburn is experienced, the skin will have small red patches.  If extreme sunburn occurs the skin will turn completely red and form water blisters which will start to pop after a few days.  

When the skin dries up it will start peeling off.  The times I have experienced sunburn, my skin took more than two weeks to recover.  I normally use a soothing after sun lotion if I spent some time in the sun during the day.

Tattoos 

I am a very curious person.  I wanted a tattoo for a very long time.  All the time I was scared that it would affect my skin in a negative way.  My sister's and I decided on some weekend that we are going to get our tattoos. 

Upon enquiry about our albinism skin, the tattoo artist assured me that nothing will go wrong.  He commented that he enjoyed working on my light clean skin.  It took about three weeks to heal without any problems.  I am looking forward to getting another one. 

Skin Changes To Note

With continuous sunburn and no remedy, a few changes will start to occur on the skin as noted below. It is advisable to seek medical attention for an assessment.

1. Skin lesion which are initially red and crusty.
2. Bumps that appears on the skin as white, waxy lump or scaly patches.

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 leave a comment, contact me as well as click the follow button on the Sidebar.

Social Spaces - Part 1

Meet Thandi Precious Manaswe

Every time I get to a new place (especially the workplace) people read me as a serious person.  This can stem from protecting myself with unwanted relationships at work because it was believed that people with albinism bring luck in relationships.  

I just remember a male colleague who came to get some guidance on a work matter, he stood in front of me and asked if this is Thandi? I said yes it is me, he went oh by the way I was warned that I should tread carefully. I had a good laugh just to allow him time to calm down and then realized that he eased up for our work conversation to continue.

Until we share one conversation then most of my colleagues get to realize that I am a loud and bubbly character.  

My sister says I am the social aunt in the family because when I am present in any family gathering there's bound to be lots of  laughter, so much fun and a great vibe.

Social Rejection

My friend and I were chased out of a taxi a long time ago.  As we were getting comfortable and I was preparing to count the money, all we heard was "I don't want these things in my car", his voice had a lot of aggression.  He then said to us go to the next taxi.  This is why I fought so hard to have my own car because the rejection was too painful.

Constant Staring 

I used to be a religious gym member. Eventually I got used to people staring at gym because I would be the one person with albinism in the entire gym. The staring from women in the change room was the most unbearable.  As I undressed one day there was this woman who stopped what she was doing to look at my body. As I turned to the other direction there was another one peeping through her towel but watching me.  I stopped visiting the change room since it would be a matter of getting into my car to go freshen up at home.

Are you sisters 

I have a long term sister (Keneilwe Morake), we met at primary school more than 30 years ago.  We love spending time together this includes going shopping and lunch dates.  Our physical features are very different, we just both have albinism.  The general question a lot of people ask us is if we are sisters?  If I have a moment to spare, this is the opportunity I use to educate the people about albinism if I am in a hurry I say yes and move on with my activities.

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

Disability Grants - Social Assistance

Albinism A Disability  

Albinism comes with an inherent short sight which may vary from person to person.   Since the short sight impairment is permanent, people with albinism are classified under people with disabilities.  Therefore children living with albinism qualify for a disability grant (social grant) which will assist in getting them the necessary care they need for their skin and eyes as our personal care stuff is expensive.  

My family provided for my needs when it came to sunscreen and prescription spectacles, we only got to know about the disability grant when I was in high school and I applied for it.

How To Apply For A Social Grant (South African Context):

1. Obtain the Grant Application Form from your nearest SSASA Offices.
2. Be a South African citizen.
3. Submit a medical assessment report to confirm the disability - in our case (albinism) a comprehensive optometrist report will be required. 
4. Both parents should meet the requirements (financial background will be assessed).
5. You shouldn't be receiving another social grant.

Word Of Caution

1. Please do not make any upfront payment upon application.
2. Once the person gets a job, they should go and cancel the grant as receiving a grant and a salary  may lead to a criminal offence.

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 leave a comment, contact me as well as click the follow button on the Sidebar.

Navigating The Roads

Hire A Driver Or Get A Rich Husband

I went to a school that accommodated short sighted and blind people.  They always discouraged us from driving because of our eyesight limitations, I remember being told that I must hire a driver or get a rich husband.  I am grateful that I am a courageous person.  I  went against the odds, got my drivers license and eventually bought my first car in April 2012 as a birthday gift to myself.  Yes I had a lot of fear as I wondered if I would cope on the roads.

Believe That All is Possible 

When I realized that I have managed well on the road and it was not scary at all, I started encouraging most of my friends with albinism (those with a qualifying driving eyesight) to take up the challenge and I am happy that most are driving today.

My Personal Challenges On The Road

1. I experience a lot of eye fatigue as my eyes have to deeply concentrate.  My eyes cannot multitask.  This has led to me moving houses as I drove facing the sun on my trips to work.  My eyes did not take it too well as it caused a lot of headaches.
2. I struggle to blink sometimes because my eyes are dry.
3. Driving in the direction facing the sun, this blinds me a lot even when  I wear my polarized sunglasses..
4. The sun reflecting on the tar road for a long period.
5. Construction marks in black, yellow and red are confusing to my eyes and I have observed that construction works on the roads causes a lot of chaos.
6. Constant brake lights especially if I there is a traffic congestion.
7. Shades of grey on the road (darker to lighter) for example; concrete barriers/tar road and guard rails.
8. Unknown destinations as my eyesight cannot see street names.

My Personal Safety Tips 

1. Because lanes disappear when it rains and it normally feels unsafe, I normally delay my trips, park on the side or do not travel at all.
2. I drive during the day when I have full visibility of everything on the road.
3. I normally keep my safe following distance in case I do not see the brake lights on time.

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 leave a comment, contact me as well as click the follow button on the Sidebar.

Surviving Emotional Abuse

Mr Perfect 

I went to an annual event in Durban (South Africa) many years ago. It was an opportunity for me to dress up, clear my head and meet new people.  This man approached me, I just told him that let's rather meet up when we are back in Gauteng. Date number one happened and all went pretty well.  

I asked for time as we were arranging my sister's wedding and I wanted to give my sister all the support she needed.  The request was granted however we would talk on the phone and have random dates.  As time progressed we agreed that we are going to give love a try.  This man did everything in a perfect way,  my friends and I were convinced that he is the one.

Crazy Habits  

Two months down the line I started noticing behavioral changes in this man but I tried to convince myself that it's a passing stage all will go back to normal very soon because I was madly in love.  He would accuse me for doing wrong things at work because I dressed up in suits as a Committee Secretary.  I was not allowed to spend time with my family members during weekends, even going to church became challenging.

The stalking habit grew as he would always call to find out where I am and make his way there.  I would leave after telling him where I was just to retaliate and spite him and I would always get a tongue lash for it.

Walking away 

I knew it was time to walk away because he would always insult me and tell me who is going to love me with this albinism of mine, my confidence levels sunk and self doubt stated rising.  I asked one of my police sisters to call him and inform him that the treatment he is giving me can result into an offense.  He insulted her and told her that he is not scared at all.  She gave me feedback and asked me to leave while I still have the chance to leave.

Death threats became a norm. At points he said if he can't have me, then nobody is going to have me. I would normally find him at the main gate of where I lived on random days, with this I decided to move to another town for my safety.

Kindness To Self

We all know how love and respect should feel as human beings in a relationship. If at some point you feel disrespected, unloved and rejected, please gather courage to leave as staying in a toxic relationship may have dire consequences to ones life.  If you are comfortable seek professional help as therapy helped me deal with all that trauma.

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 HERE

The Corporate Jungle

Tell Us About Yourself

A very popular question in an interview.  I always make sure that I speak about my eyesight as many people do not understand the albinism eye.  I also do the same when I get to a new company then the respective manager can inform the team.

Reasonable accommodation

It is a legislative requirement that companies should provide reasonable accommodation for people with disabilities to ensure that they work in a comfortable and conducive environment.  I normally need a darker space as too much light blinds my eyes.  Time and again I would have conversations with my friends with albinism to find out if they are reasonably accommodated,  most of them say that it just feels like people with disabilities are recruited for Employment Equity statistics and left in limbo.

New Ways Of Working 

Covid 19 brought about a lot of change within the working environment.  I was moved to a new department because of company changes.  Working from home meant that I would spend long hours on the laptop.  My eyes started reacting to this new change, they became very teary and red which got worse as days went by.  I decided to consult with an ophthalmologist (a specialist doctor above the optometrist) she confirmed that all is caused by spending too much time on the laptop and she prescribed medication to rectify that problem.  

I scheduled a meeting with the manager so I can update her.  The dry answer I got in that meeting was "oh I thought you were normal."  It's years later and I am still trying to make sense of  that comment.  I then applied for a position elsewhere.

The latest obstacle I came across was when I applied to alternate working days between two offices closer to my home as driving to the office was straining because I would spend so much time stuck in traffic which affected my eyes.  The application was declined.

Disability Committee 

I love serving my community with disabilities at the workplace.  I always find myself in this space because people are mistreated and they get scared to talk about it.  I am blessed with a fighting spirit and I try to assist although some issues take time to get resolved.  The common issue is that people with disabilities are normally classed for being good with admin jobs as they get recruited.  This has been a long term fight however I am hopeful that we will rectify this in the future.

My Personal Challenges In The Workplace

1. At points we have meetings where items are displayed on a projector,  having to focus on the projector is a strenuous exercise for my eyes.  At points I just make a decision to rather listen in or read from my laptop if the information was shared before the meeting.
2. Having to work on a computer for a very long time especially on Excel burdens my eyes even when breaks are taken.
3. Being put under pressure to review large documents for inputs, I normally ask for extra time or I use my personal time to ensure that I submit on time.

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 HERE

Education System

Special Schools

I went to boarding school for the rest of my schooling days.  This was because my grandmother wanted me to be protected from the community as she and my mother were always being ridiculed for having to prove that I am not white.  

The schools were classified as special schools because they accommodated people with different disabilities.  I went to two schools that catered for blind people.  Because of our low vision, people with albinism are classed under one of the blind categories.

Primary And Secondary School

At these schools, we normally had a small number of pupils so that we get the teachers attention.  Our text books were in large print. In primary we would stand in front of a chalk board for our lessons and in secondary school we had TV monitors in front of us to project as the teacher went through our lessons.

Higher Education 

Most universities have a Disability Centre where they assist people with disabilities with different required assistance.  I submitted my doctors (optometrist) comprehensive eye report.  The learning material was in a large font (paper copies).  For examinations I would be allocated a separate venue with an invigilator so that they could assist if I could not see at points and extra time was allocated to the examination time as the set normal two hours was never sufficient.

Technology Times

This section is from my niece Mapule, she also has albinism and yes we are abundantly blessed with albinism in my family.  This is what she had to say about education in current technology times as she is still in university.

From Mapule:

"Due to the rise of technology and the fact that people became more educated, my school was able accommodate my albinism and short sight condition.  My school co-operated with my optometrist to ensure that I was provided with sufficient tools for my eyesight.  In my primary years of schooling my school provided me with magnifying tools to make it easier to read words and see diagrams.  When I went to high school technology progressed, I was able to write my tests and exams with an electronic reader.  

In my opinion because of the enhanced digital technology, the education system has improved drastically.  I feel like more children with albinism will be able to access the adequate tools they need to further their  education." 

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 HERE