I am Paul Kachela and I have Ocular Albinism, which is a genetic condition that causes lack of pigment in the skin, hair and eyes and is often accompanied by visual impairment. A young person with albinism has great difficulty because often their family doesn’t understand the need to use protective clothing to shield them from the sun and the importance of sunscreen. Persons with albinism are thought of as abnormal or evil spirits. My own family had problems handling my situation, I was even failing to go to school, because of their lack of knowledge of my condition.
Working in the sun is difficult because my skin cannot accommodate the light so I can’t work at farming and fishing like my family. My parents are farmers and despite knowing I was an albino, they sometimes forced me to work in the fields, but…this is what my family understands. I need to do other jobs out of the sun that do not put me in danger. Some friends have similar experiences with their families who even stopped them from wearing caps, not understanding this is to prevent melanoma.
People laugh at us, call us names and say threatening things. They should understand that we feel bad when they mock us. Our greatest fear is of people who think of us as a possible source of income. Some desperate and immoral people consider maiming or killing us for our body parts and selling them for huge amounts of money. This actually happens in Africa! We look different but we are intelligent and not Ghosts as some people believe.
They fail to understand us and blame persons with albinism for bad luck, however we know we are exceptional beings and realize people just don’t recognize this because of ancient cultural beliefs.
Sr Agnes remarks, “After Paul went to school, his aunt (sister to his mother) took him in and he started staying with her during holidays. Sometimes he was kept by house parents during holidays. His father never bothered to know where he was.”
I am now in a very good and happy time, for I can understand myself as God created me. Albinism is a challenge especially because of visual distortions and poor sight. Sometimes I find it a challenge when it comes to seeing things which are distant, and sometimes I find it a challenge to see something which is at a short distance. My vision is constantly changing and is very sensitive to bright colours and light. It is easier for us to see bright colours, for it helps us to locate places at a distance. Our school is a joyful environment and it has landmarks which are painted yellow and black, which are very easy for us identify and show where we are going. Sometimes when I rise from sleep, brightly colored objects and bright lights makes my head very painful whereby even the tears come out of my eyes. I like wearing dark clothes, for it does not reflect light, and protects my eyes from the pain.
When I was growing up, some in my community understood me but others were afraid of me and thought maybe I was a ghost. I wondered to my Mother, “Why do people run when they see me?” My mother explained saying, “They just feel scared when you go near them because they think you may hurt them. I know you are a human being like everyone else.” People believe when a woman conceives a child with albinism, she has done something wrong to the society, or maybe to the spirits. I am upset when people call me bad names, then other times I feel very good associating with people with different skins who understand albinism is genetic not supernatural.
When I came to school St Mary’s School, for the visual impaired I was seven years old and the youngest. I learned to associate with others easily because St Mary’s is a community of people with visual impairment. I feel normal here where I understand myself and the community understands me. The people in this school family are very kind and the students at the school are very comfortable here.
Betty Jane says, “Paul was very articulate and full of stories, and quick to learn how to care for the instruments – stringing, repairing, tuning, and simple chording. He was a good coach for the blind students as his own sight is very poor, and he understood their challenges. He always wore a red cap, tilted his head and squinted through almost closed eyes that looked infected and were painful. His face and hands were rough and full of sores. He has a huge smile.”
John and John were impressed to see Paul join the volunteers who slashed the grass to prepare the grounds for the student’s arrival. At a farewell party for ICC members, he acted as DJ and MC. We saw him modelling leadership for the many students in the school who were dealing with the same challenges that they had to cope with at a similar stage and age.
I’m very proud of myself because I’m now able to do productive work as a teacher. The Canadian organizations, Inverness County Cares and Chalice have supported my education and given me a chance to become independent. Many thanks to the Canadian people for their contributions to my education. Without the St Mary’s Special School in Kawambwa I could not have achieved what I have. At St Mary’s School I have learned how to navigate our community and the outside world.
Inverness County Cares (ICC) is a local charitable organization, founded in 2012 and based in Inverness County, NS, Canada. ICC works in partnership with Chalice.ca, a Canadian charity, based in Bedford, Nova Scotia. Chalice provides guidance and assistance to help ICC provide a better life for the children at the Kawambwa schools. The Kawambwa Project involves supporting two schools for albino and visually impaired students, in Northern Zambia. Inverness County Cares always welcomes new members. Individuals who wish to donate, can use the donate button on our website https://invernesscountycares.com When using E-transfer, please include your mailing address for CRA tax receipts and a thank you message. E-transfer address: [email protected] or send a cheque to Inverness County Cares, 5414 Route 19, Judique, NS, Canada, B0E1P0. Taxation receipts provided.