Most of us have come across sad, unbelievable stories surrounding albinism more than once in our lives. From babies being killed soon after death, to ritual killings and children being hidden in their homes. Parents and children with albinism continue to be neglected by society, and in some cases, even the parent ends up leaving.
As the world commemorates International Albinism Awareness Day, we are celebrating one woman who stayed through it all, not only for her children, but several others with albinism. She is popularly known as Mujiba because of her fighting, undying spirit. Her painful journey as a mother of two children with albinism has given her resilience and strength to stand up for and give hope to the albinism community.
RAISING CHILDREN WITH ALBINISM
My real name is Loveness Mainato. I am a single mother of four – two of my children have albinism and two are dark-skinned. My first one was born in 1996 and is dark-skinned. The second one, a girl, has albinism and was born in 1999. The third born is a boy (dark-skinned) who was born in 2002. The last born, another boy, was born in 2007 and has albinism.
When I gave birth to my second child who has albinism, all my husband’s relatives [refused] to accept her as a normal child. They would gather around and laugh at my baby, calling each other to come and see the type of child I had given birth to. She was a source of mockery. They did not even try to hide it. I could hear them laughing and saying a lot of things. When I gave birth to my second child with albinism in 2007, my husband was influenced by his relatives to leave our family. That was the end of our marriage.
I had to run around to make ends meet for my children. I made sure all of them went to school. Today some have already finished their high school and are now looking into advancing their professional careers. Resilience is key, and I urge and encourage all women and mothers who have children with various disabilities to stand by their children up until they see their success. It requires a strong and passionate heart. I am so proud and grateful to the Lord because my children have reached alarming stages because of His mercy.
LOVE AND SUPPORT FROM FAMILY
My family welcomed the condition of my children with both hands. My mother would go an extra mile to ensure they lived in a germ-free environment. She even suggested they be bathed in [buckets] we used for our plates because my babies were so delicate, she assumed the buckets used by the rest of the family would be infectious. I always hoped the love my family showed me would change the mindset of my in-laws but nothing has changed. They still have negative perceptions.
COMING TO TERMS WITH MY CHILDREN’S CONDITION
Having children with albinism came as a tragedy to me at that time because I suffered depression. I faced a lot of challenges and disturbing situations. I had to face harsh words and negativity from society. At one point, I ended up being hospitalized. The myths and misconceptions surrounding albinism in our African society are just unbearable. I thank God because I overcame all the difficulties, all the hardships and stood up as a strong woman and now I am helping others. I am proud to be where I am today and I’m proud of the community that I’m leading. No wonder my children call me Mujiba. Music became my source of solace at the time. To manage my stress, I wrote music, composed songs and ended up recording music, even receiving an accolade for Best Female Sungura Musician in 2019. Right now, I am a renowned Sungura musician with much successes to my name.
HELPING OTHERS WITH ALBINISM
I am not only mother to my biological children, but I am also taking care of orphans and vulnerable children with albinism at my home. I formed the Albino Charity Organization of Zimbabwe in 2009, two years after my husband left. The challenges I encountered as a parent of children with albinism inspired me to form the organization. People with albinism lack representation. Most of their problems start from their background; they are neglected and stigmatized by their families, and their community also marginalizes them. Everyone tends to shun them. As an organization, we try to address all these issues and because of the programs we are running, they are finding life worth living. We are doing community sensitization programs, campaigns in the workplaces and awareness campaigns in schools. We are also helping make the environment conducive for them to live in.
People with albinism need special skincare lotion which is expensive for the ordinary person; negligence from the community at large; marginalization from social spheres, employment spheres and education spheres. They are not given equal opportunities in every sector of life, and it makes their life [feel] unworth living because they feel like outcasts in the community.
INTERNATIONAL ALBINISM AWARENESS DAY
On this day we should learn to appreciate, respect and love people with albinism because they are like any other person in the community. To us the 13th of June means a lot because it is the day set aside by the United Nations for all nations to celebrate the lives of people with albinism. It is on this day that the albinism society gets to express their sentiments and bring awareness about albinism. It is a day they get to showcase what they are capable of doing and remind everyone of their rights.
WORD OF ADVICE
We should show love, concern and care for people with albinism. As the Albino Charity Organization of Zimbabwe, we have a motto “We love, we care, chenga ose manhanga hapana risina mhodzi” meaning “everyone is equally important and should be loved equally.” We all have a lot of work to do to have the minds and perceptions of people corrected when it comes to albinism. We were all created in the image of God.
Phoebie Shamiso Chigonde is a journalist passionate about gender equality, social development programmes and grassroots-based solution seeking initiatives. She has a passion for women and community development. Phoebie is also a radio personality at a regional commercial radio station, a platform that enables her to network with like-minded women, journalists and activists as she continues to document and tell the story of the ordinary woman from the lens of that very ordinary woman.