In GOLDEN BOY, the main character, Habo, is albino. Initially, no one understands why he looks so different from his parents and siblings. Only later does Habo come to understand that he is a person with albinism.
Albinism is a genetic condition, just like having red hair or being born allergic to milk. Like having red hair, albinism is a gene that has to be carried by both the mother and the father, neither of whom may express that trait themselves. So, for example, both of my parents have brown hair, and my brother has brown hair but, because both of my parents had the gene for red-headedness, I was born a redhead. The same is true of albinism: two people who are not albino can have some children who have albinism and some who don’t. Depending on who they marry, their children may or may not have albinism.
- A note: the term “people with albinism” as opposed to the more common “albino” is preferred by activist groups because it highlights their shared humanity rather than their difference. Though this term was too high-level to be appropriate for Habo’s voice in my book, I will use the term “people with albinism” preferentially on this website whenever possible.
People with albinism have no pigment in their skin and often suffer from low vision or partial blindness. The “look” of albinism varies around the world. Caucasian people with albinism, those most commonly portrayed in the media, have extremely white skin, white-blonde hair and pink eyes. African people with albinism look slightly different: they also have extremely white skin, but their hair is a yellower color and their eyes are light blue, green or hazel.
People with albinism also frequently experience complications of the eye muscles including being cross-eyed and nystagmus, a condition where the eyes sway back and forth uncontrollably. The trouble that people with albinism have seeing often makes it more difficult for them to learn to read without the aid of glasses or magnification of the print. In most places in the developing world, children with albinism are often not allowed the same access to education as other children, or they are enrolled in schools for the blind. Both of these trends lead to the under-education of people with albinism as adults and a misperception in society that they are “stupid,” or somehow incapable of higher thought as much as “normal” people.
A final health concern for people with albinism, especially in tropical climates, is skin cancer. Because of the lack of pigment in their skin, people with albinism burn easily and frequently in the sun. In developing countries, where sunscreen is generally priced for foreigners, mothers often have to take on a second job simply to cover the cost of sunscreen and protective clothing for their child with albinism. Even so, people with albinism rarely know to use enough to stay protected and frequently contract skin cancer at young ages. The average life expectancy in Tanzania for a person with albinism is between 35-40 years of age, mostly as a result of skin cancer.
Find out more about how albinism is experienced in Africa on my page Albinism in Tanzania
Further Reading:
- NOAH: National Organization for Albinism and Hypopigmentation
- Pieter Hugo, photojournalist: “Looking Aside“
- Jacquelyn Martin, photojournalist: “Portraits of Albinism“
- March 19, 2012: Tyra Banks Show: VIDEO: Albino Models
- May 13, 2012: All Africa: ARTICLE: “Albinos want more realistic name”
Tara Sullivan 