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Albino actress overcomes discrimination and abuse, champions rights for people with albinism

No one befriended me at school. Instead, the children spat on me, ridiculed me, and hurled hurtful names at me.

  • 3 weeks ago
  • September 11, 2024
11 min read
Regina Mary Ndlovu, who suffered from severe discrimination, sexual abuse, and illiteracy due to her albinism, now uses her voice to advocate for the rights of albino individuals and empower children. | Photo courtesy of Regina Mary Ndlovu Regina Mary Ndlovu, who suffered from severe discrimination, sexual abuse, and illiteracy due to her albinism, now uses her voice to advocate for the rights of albino individuals and empower children. | Photo courtesy of Regina Mary Ndlovu
Regina Mary Ndlovu is an actress and activist. An alumna of USAID's Young African Leaders Initiative (YALI) Regional Leadership Center and founder of My Voice:
JOURNALIST’S NOTES
INTERVIEW SUBJECT
Regina Mary Ndlovu is an actress and activist. She is an alumna of USAID’s Young African Leaders Initiative (YALI) Regional Leadership Center and the founder of My Voice: Albinism The New Era, a platform that advocates for people with albinism through storytelling, podcasts, counseling, short films, and documentaries. Her documentary “I, Mary,” which tells the story of the dangers and discrimination she has faced as a woman with albinism, won the Amnesty International Durban Human Rights Award in 2021.
BACkGROUND INFORMATION
Albinism is a genetic disorder characterized by the complete or partial absence of melanin pigment in the skin, hair, and eyes. While the rate of people with albinism in Europe is about 1 in 20,000, in certain parts of Africa, the rate may be as high as 1 in 5,000. Many people with albinism suffer from ignorance about their condition, severe discrimination, and stigma. In Africa, individuals with albinism are persecuted, killed, dismembered, or raped due to the mistaken belief that body parts, when used as ingredients in rituals and potions, will bring prosperity.

JOHANNESBURG, South Africa — Growing up in Zambia with albinism, I faced extensive discrimination. From an early age, people spat on me due to deeply ingrained beliefs rooted in pagan myths and irrational fears. Upon seeing me, children screamed and cried in fright.

[Albinism is a genetic condition characterized by a lack of melanin, resulting in very light hair, pale skin, and often impaired vision.]

In African culture, people believe that albino body parts hold magical powers. Specifically, they think cutting an albino’s hair brings wealth, and engaging in sexual activity with an albino cures illness. Tragically, these misconceptions lead some parents to abandon or harm their albino children, worsening the stigma they face.

Read more stories from South Africa at Orato World Media.

Growing up with albinism: woman confronts abuse, prejudice, and loneliness

As an albino child, I grew accustomed to silence, as if monsters lurked in the shadows. These monsters took many forms, as I navigated countless situations without understanding their implications. In a community where ignorance fueled fear and prejudice, my albinism set me apart.

When I was eight years old, I encountered sexual abuse for the first time. Back then, I lacked the awareness to recognize certain behaviors as rape. At school, my seemingly innocuous teacher beckoned me to his desk. He kept one hand at the desk, while the other remained hidden beneath my dress. He repeated the assault continuously. Yet, I buried it within myself, convincing myself that I deserved such treatment.

In total, I faced 15 instances of rape. Shame and fear silenced me. I believed that my visual impairment, perceived lack of intelligence, and my skin—all of which resulted from my albinism—led me to feel less than human. I carried loneliness with me as my constant companion.

Due to my looks, my older brother and I faced strained relations. During our shopping trips, he urged me to walk away, distancing himself from me as his “different” sibling. Meanwhile, our community speculated that my mother had an affair with a white man, which ultimately led my father to abandon us.

Woman endures severe discrimination at school due to skin color and vision problems

Growing up in Zambia and then moving to South Africa exposed me to vastly different experiences. In Zambia, I faced severe discrimination due to my skin color. No one befriended me at school. Instead, the children spat on me, ridiculed me, and hurled hurtful names at me. Simultaneously, teachers locked me in the bathroom to hinder my ability to read and write. They avoided communicating with me. One elementary school teacher even claimed I did not belong in the class due to my vision problems. This issue persisted through high school, where teachers and professors passed me from grade to grade despite my inability to read or write.

Imagine sitting at the back of a classroom, feeling a lump of fear rise in your throat as the teacher begins writing on the board. Everyone around you begins taking notes frantically, but you see only blurred lines. When you hesitantly raise your hand to ask what the professor is writing, explaining your vision issues, the teacher responds with exasperation and hostility: “I cannot teach someone like you. I do not want you in this class. You do not belong here.”

At a young age, the school’s harrowing experience destroyed the foundation of my education. In my community and educational environment, people discriminated against me due to my skin color. They viewed me as a freak. Their looks and comments made me feel worthless, destroying the personality and identity of a young girl. At 35, I am still improving my reading and writing skills.

Eleven suicide attempts lead young woman to psychiatric care

Growing up, I lacked access to information about albinism. My family did not understand the struggles I endured at school, leaving me to confront these challenges alone. I felt isolated with no one to talk to or share my experiences with. Without a supportive community and open dialogue, I remained silent. I felt unheard because society was unwilling to address my suffering. No one was ready to discuss albinism or the violence and discrimination associated with it.

Over time, I grew more aware of the consequences of being an albino person. I once suffered severe burns and sores all over my body as I did not use sunscreen properly. This happened due to a lack of guidance on proper skin care, particularly the importance of sunscreen. In 2023, I underwent two operations for skin cancer, resulting in the removal of a piece of my ear and one of my breasts. Every second spent outdoors poses a life-threatening risk. Like other albino people, my skin is susceptible and delicate under the sun.

Looking back, I recognize that elementary school shapes the essential foundation for every child’s life. Planting the right seeds ensures good development and opportunities. Rejection as a child fueled my insecurities and shattered my confidence. As a result, I felt unworthy and incapable of achieving anything.

Reading and writing are basic human rights, essential wherever you go. As I observed others reading and writing effortlessly, I felt ashamed due to my struggles with these skills. At 17 years old, overwhelmed by emotional burdens, I attempted suicide eleven times. Subsequently, I was confined to a psychiatric hospital.

Audio Bible transforms woman’s life, teaching her to read and write

The most significant part of my journey began when I learned to read and write. I chose the Bible as my first book, marking the start of a transformative period in my life. Some people claimed God created it as a curse, while others saw it as a blessing. Like everyone else, I carried both positive and negative perceptions.

Regina is the founder of My Voice: Albinism The New Era, a platform that advocates for people with albinism through storytelling, podcasts, counseling, short films, and documentaries. | Photo courtesy of Regina Mary Ndlovu

For a long time, I directed my anger toward God and the universe for being born the way I am. A Bible was always nearby in my childhood home. One day, I picked it up and began to observe it. The small size of the letters surprised me. I gazed at it with anger, questioning both the Bible and God. I cried, “God, I hate you, you are evil,”. Consequently, I tore apart the Bible and watched as its pieces fell to the ground.

After I destroyed the Bible, I wondered how I could know God if I could not read. Curiously, I thought about why I was made in a way that the world disowned. Two days later, my cousin visited me with a CD he no longer wanted. Immediately, I went to my room to find out what it was and discovered an audio Bible. Everything that seemed impossible now fell within my reach. Although I could not read God, I could listen to him. At that moment, I realized that I could learn to read and write as I could understand everything written in the Bible.

Eagerly, I began watching movies with subtitles and paid more attention to the words. When I wanted to know how to spell sugar, I went to the kitchen, picked up the sugar packet, and examined the letters that formed the word.

Woman finds self-acceptance after overcoming self-hate

The first sentence I wrote was “I hate myself, I hate you, God.” Inadequately, I believed that there was no place in this world for someone like me. Everything in my life seemed negative, and I felt incapable of doing anything. Seizing every moment to write, I snuck my notebook in during class. While others completed their homework, I scribbled “I hate myself” on every page.

For a long time, I prioritized others, losing myself. I struggled to discover my life’s purpose and what I truly wanted to do. My quest for acceptance drove me to make poor decisions. I drank heavily, smoked, and associated with harmful people. Even though they intended to hurt or abuse me, I sought their love. Looking for love from others, I expected it would make me feel normal. Nevertheless, I learned that I had to find self-acceptance instead.

Facing my tears, I stopped hiding my true self from the world. Soon after, theater classes marked a turning point, prompting me to confront life head-on. A classmate challenged me to tell the truth, revealing that I was pretending to be okay and illiterate for 25 years, living a fictional life. She offered her help, and despite my struggles with reading and writing, she dedicated herself to documenting my life story. Reliving every painful moment was really hard, but I found it to be the best decision I ever made.

Revealing illiteracy on stage marks the beginning of healing journey

Receiving the audio Bible from my cousin was the happiest moment. It helped me stop viewing myself as a mistake and realize that there was a reason for my existence. God made me brave, wonderful, and spontaneous. Emotionally, it enabled me to set aside my anger and focus on more positive aspects of life.

One day, I eagerly anticipated performing in front of a large crowd. At the end of the first performance, I stood in the middle of the stage. Finally, I released the secret that haunted me all my life. As I faced an unfamiliar audience, I shouted at the top of my lungs revealing I did not know how to read or write. Fortunately, that day marked the beginning of a deep healing process.

Saying it out loud was very important to me. The audience broke into applause as I stood in shock, watching the crowd praise me. I remember how my teachers assumed I knew how to read and write because of my way of communicating. They used to place a book in front of me in the middle of the class and ask me to read it. Feeling ashamed, I had to run to the bathroom to cry and hide. Nonetheless, telling the world a big part of my life, I felt relieved.

With my family, it was a slower process. For a long time, we stayed silent, but eventually, I told them about what I went through. Now, they take great pride in my acting career, the decisions I made, and the life I am building. The reactions to my plays touch me deeply. People often share their experiences and thank me, saying my work has changed their lives.

Woman advocates for people with albinism, empowers children

Being a mother provides me with the most rewarding experiences of my life. I watch my daughter grow and cherish every moment with her. Today, I aim to protect her from the hardships I faced. I strive to provide her with a life filled with love and respect. Additionally, I want to create a safe space where she can always find support and guidance.

At the same time, I continued the interview program I launched in 2019. To interact with us, I gave people the chance to share the stories of those with albinism. Despite the challenges of managing paperwork and writing proposals, I remain determined. This project deserves all my effort as I aim to reach a global audience. I transformed my past anger and sadness into efforts that help others and advocate for the rights of albino people and those living with HIV. Making a difference in their lives brings me immense joy and pride.

Through my program, Dynamite Dynamic Explosion, I empower others to transform their struggles into strengths. As I work with children, I see reflections of my pain and past, which drives me to teach them about their inner potential. I missed out on a childhood myself, so I now strive to provide for others what I once needed. Freedom inspired me. I broke free from silence and shame, discovering what was possible. Sharing my story gave me a sense of liberation as I felt alive and human for the first time.

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