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.

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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