My Experience with Albinism | Mahle Solombela
11 September 2021 · 4 min · as at 2021-09-11
Mahle Solombela (guest)
Listen to the episode on iono.fm · MP3
About the guest
Mahle Solombela
Has oculocutaneous albinism, which affects her skin, hair and eyes. She attended a public school and credits discussions with her mother about self-esteem for her confidence.
Guest details come from the published episode notes or the guest's own words in the episode.
Episode analysis
Analysis by AI, drawn only from this episode; every point links to the moment it rests on.
In a short first-person account, Mahle Solombela describes growing up with oculocutaneous albinism. She recalls being laughed at in church as a young child and how her mother dealt with it. She describes the loneliness she felt at a public school. She gives figures on how common the condition is and explains how it affects her skin, hair and eyes. She also describes how her mother's support and role models such as Deandra Forrester helped her feel proud of who she is.
Key ideas
- Mahle says being a shy child with albinism made it hard to stand up for herself, and attending a public school made things worse. [00:20]▸ [00:53]▸
- Mahle, echoing her mother, insists on the phrasing 'people with albinism, never albino'. [01:35]▸ [01:38]▸
- Mahle cites a rate of one in twenty thousand people and concludes she is not alone. [01:42]▸ [01:53]▸ [02:00]▸
- Mahle describes the condition's everyday effects: sun sensitivity, sunburn after a field trip, and trouble seeing the board in class. [02:03]▸ [02:13]▸ [02:21]▸
- Mahle credits tough situations and talks with her mother about self-esteem for building her confidence and her sense of humour. [02:46]▸ [02:55]▸ [03:01]▸
- Mahle argues her condition makes her special and does not hold her back, and that how she lives with it defines her. [03:12]▸ [03:22]▸ [03:24]▸ [03:27]▸
Lessons
- Mahle's story shows a parent stepping in when a shy child reports teasing. [00:20]▸ [00:42]▸
- Mahle holds that the words used matter: say 'people with albinism', not 'albino'. [01:35]▸
- Mahle describes difficult experiences becoming a source of confidence and humour over time. [02:46]▸ [02:55]▸
- Mahle points to role models with albinism, such as Deandra Forrester, as a reminder that the condition need not hold anyone back. [03:12]▸ [03:24]▸
Who it's for
People with albinism and their families, parents of shy children who are teased, and teachers or classmates who want to understand the daily realities of living with albinism.
Facts stated in the episode
- Mahle cites MadelinePlus.gov: oculocutaneous albinism occurs in one in every twenty thousand people worldwide. [01:42]▸
- Mahle estimates she is approximately one of 395,000 people with the condition in a world population of 7.9 billion. [01:53]▸
- Mahle states that oculocutaneous albinism affects the skin, hair and eyes. [02:03]▸
- Mahle names Deandra Forrester as a famous model with albinism and a role model. [03:12]▸
Questions this episode answers
- What is it like growing up with albinism?Mahle says it was difficult, especially as a shy child. People stared and laughed at her, and attending a public school made things worse. She spent lunch breaks with girls who did not like her because she was afraid to be alone. [00:20]▸ [00:53]▸ [01:04]▸
- Should you say 'albino' or 'person with albinism'?Mahle, quoting her mother, says it's people with albinism, never albino. [01:35]▸ [01:38]▸
- How common is oculocutaneous albinism?Citing MadelinePlus.gov, Mahle says it occurs in one in every twenty thousand people worldwide. That makes her roughly one of 395,000 people out of 7.9 billion. [01:42]▸ [01:53]▸
- What does oculocutaneous albinism affect?Mahle says it affects her skin, hair and eyes. She cannot enjoy the sun or look at the sky without being dazzled. She got sunburnt after a field trip and struggled to see the board in class. [02:03]▸ [02:13]▸ [02:21]▸
- How can a child with albinism build self-confidence?Mahle credits countless discussions with her mother about self-esteem, the lessons of tough situations, and role models like Deandra Forrester for her confidence. [02:46]▸ [03:01]▸ [03:12]▸
- Does albinism hold people back?Mahle says it makes her unique and does not hold her back. How she chooses to live with it is what defines her. [03:22]▸ [03:24]▸ [03:27]▸
In their own words
Longer stretches of the conversation, word for word from the transcript, turn by turn.
Teased at church and struggling at school
Note (AI): Mahle's childhood account of being laughed at, her mother's intervention, and how shyness made school harder.
Mahle Solombela, guest · [00:07]When I was about five or six years old, I visited a different church from my usual one and sat along with the other children around my age. Throughout the little service we had, I noticed two older boys who sat not too far away from me. Every time I looked in their direction, I picked up on how they would stare and laugh at me. Having dealt with similar …
Read the full passage (223 words, 00:07-01:13)
Mahle Solombela, guest · [00:07]When I was about five or six years old, I visited a different church from my usual one and sat along with the other children around my age. Throughout the little service we had, I noticed two older boys who sat not too far away from me. Every time I looked in their direction, I picked up on how they would stare and laugh at me. Having dealt with similar situations before, but not being too good at standing up for myself, I took note of it and made sure to let my mother know. When the service had ended and I saw her again, I explained to her what had happened and pointed them out, saying, Those two boys. She called for them, and they walked over with the biggest worry in their eyes. From there, she told them off, and they left looking sure they would never tease anyone again. Growing up with albinism was difficult, especially because of the shy child I was. This made it quite difficult to stand out for myself, and attending a public school only made things worse. I had only one good friend, and luckily she stuck well by me, but most days I'd spend my lunch breaks with a group of girls who didn't really like me because I was afraid to be alone.
Living with oculocutaneous albinism and finding confidence
Note (AI): Explains the condition and its daily effects, then traces how her mother's support and role models built her self-confidence.
Mahle Solombela, guest · [01:42]I have what is called oculocutaneous albinism. And according to MadelinePlus.gov, oculocutaneous albinism occurs in one in every twenty thousand people worldwide. In a world population of seven point nine billion, I'm approximately one of three hundred and ninety-five thousand people with this condition, so I know that I'm not alone in this. Having oculocutaneous albinism means that it affects my skin, hair, and eyes. This can be pretty bothersome …
Read the full passage (320 words, 01:42-03:30)
Mahle Solombela, guest · [01:42]I have what is called oculocutaneous albinism. And according to MadelinePlus.gov, oculocutaneous albinism occurs in one in every twenty thousand people worldwide. In a world population of seven point nine billion, I'm approximately one of three hundred and ninety-five thousand people with this condition, so I know that I'm not alone in this. Having oculocutaneous albinism means that it affects my skin, hair, and eyes. This can be pretty bothersome considering how much I enjoy nature. I don't get to bask in the sun or look up in the sky in beautiful, cloudless days without seeing the sun a few shades darker, or it absolutely dazzling me. But at least I get to tell stories about how one time I had a field trip and came to school the next day to an unannounced picture day looking the same colors everyone's favorite red Power Ranger, or about how I would playfully get teased by my classmates when I couldn't see the board from my seat in class. I've learned to live around the little challenges that I face every day, so in the grand scheme of things, it really isn't all that bad. Unfortunately, I still haven't mastered how to school someone or just have a good enough comeback when someone says something plain ignorant. But all the tough situations teach me confidence and make me comfortable enough to make silly little jokes. And despite the occasional stares, countless discussions with my mother about self-esteem have helped me become confident enough to speak proudly the way I am now about my albinism. When I look at role models like Deandra Forrester, a famous model with albinism, I know that while this may be tough sometimes and that the boys in church may giggle, my condition makes me special. It makes me unique and it does not hold me back. How I choose to live with it is what defines me.
Quotes
“it's people with albinism, never albino.”
“so I know that I'm not alone in this.”
“I've learned to live around the little challenges that I face every day,”
“all the tough situations teach me confidence and make me comfortable enough to make silly little jokes.”
“my condition makes me special. It makes me unique and it does not hold me back.”
“How I choose to live with it is what defines me.”
What was said, by topic
Childhood teasing
“When I was about five or six years old, I visited a different church from my usual one and sat along with the other children around my age.”
“Every time I looked in their direction, I picked up on how they would stare and laugh at me. Having dealt with similar situations before, but not being too good at standing up for myself, I took note of it and made sure to let my mother know.”
“I had only one good friend, and luckily she stuck well by me, but most days I'd spend my lunch breaks with a group of girls who didn't really like me because I was afraid to be alone.”
A mother's support
“She called for them, and they walked over with the biggest worry in their eyes. From there, she told them off, and they left looking sure they would never tease anyone again.”
“please note, as my powerful mother always says, it's people with albinism, never albino.”
Living with albinism
“Growing up with albinism was difficult, especially because of the shy child I was. This made it quite difficult to stand out for myself, and attending a public school only made things worse.”
“she mentions how people would walk down the street and shout albino at her in an overly excited or surprised manner, and how people would just stop to get a good look at her for whoever knows what reason. These are both situations that I've experienced,”
“I don't get to bask in the sun or look up in the sky in beautiful, cloudless days without seeing the sun a few shades darker, or it absolutely dazzling me.”
“But at least I get to tell stories about how one time I had a field trip and came to school the next day to an unannounced picture day looking the same colors everyone's favorite red Power Ranger,”
“I've learned to live around the little challenges that I face every day, so in the grand scheme of things, it really isn't all that bad.”
Oculocutaneous albinism facts
“I have what is called oculocutaneous albinism. And according to MadelinePlus.gov, oculocutaneous albinism occurs in one in every twenty thousand people worldwide.”
“In a world population of seven point nine billion, I'm approximately one of three hundred and ninety-five thousand people with this condition, so I know that I'm not alone in this.”
“Having oculocutaneous albinism means that it affects my skin, hair, and eyes. This can be pretty bothersome considering how much I enjoy nature.”
Confidence and self-esteem
“Unfortunately, I still haven't mastered how to school someone or just have a good enough comeback when someone says something plain ignorant. But all the tough situations teach me confidence and make me comfortable enough to make silly little jokes.”
“And despite the occasional stares, countless discussions with my mother about self-esteem have helped me become confident enough to speak proudly the way I am now about my albinism.”
“It makes me unique and it does not hold me back. How I choose to live with it is what defines me.”
Role models
“When I look at role models like Deandra Forrester, a famous model with albinism, I know that while this may be tough sometimes and that the boys in church may giggle, my condition makes me special.”
Episode notes (as published)
From the episode notes published with the podcast.
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Every quotation and passage on this page is copied word for word from the episode audio transcript and linked to the moment it was said. Quotations are never written or altered by AI; topic labels, passage notes and the episode analysis are AI-generated. Guest details come from the published episode notes or the guest's own words.