According to Manuel MSD, “oculocutaneous albinism is a group of rare inherited disorders in which melanocytes are present, but melanin production is absent or greatly diminished.” It affects people of all races all over the world. To diagnose this oculocutaneous and ocular disease, an examination of the skin and eyes is necessary. In a testimony for Current wifeLilia Benchabane, a young woman comedian affected albinismspoke about his daily life with the illness.
“Albinism is the fact of not having melanin in the body”
“T’choupi and Mickey should have an albino friend or a quadriplegic friend”, says Lilia at the start of the video. In fact, the young woman explains that this would allow “to advocate integration and living together until the end”. According to her, the albinism she suffers from corresponds to “an absence of melanin in the body, leading mainly to very white skin and very low vision”. Lilia explains that she is not totally blind, in large part, because her body contains a little melanin. Which allows it “to have a little dark hair and to see a little bit”she declares.
Comedian in life, Lilia Benchabane indicates that one of these “valves” in her show consists of saying that her life is a ‘blind test’ since she gets into bushes very often. According to her, self-deprecation helped her a lot in accepting her difference. “I felt much more comfortable taking my albinism lightly because it’s not a tragedy. There is worse and there is better”, she declares. She explains that she learned to live in the dark on her own, by comparing her life with that of others. This is why according to her, when you are albino, “You either deal with it or you try to fight against it, but in fact you are fighting against something you can never change.”
“I’ll have to deal with it, but without letting myself be stepped on”
Lilia, whose daily life is turned upside down by albinism, explains in the video that she blames her disability on the one hand, and the justice system on the other, since she wonders why this disease fell on her. “Even though I have the skills and acuitythere are many things I will never be able to do,” she indicates. This is why she says she feels frustrated at this level. However, according to her, her difference has allowed her to be who she is today, and to have real strength of character.“My biggest challenge in life was never to depend on anyone else and to always fend for myself,” she says in the video. A successful challenge, since the young woman can now live alone and also move around alone.
A victory that she dedicates largely to her parents, because they “raised her with the same education as her brothers and sisters, which made everything normal for her.” However, her disability caught up with her at the age of 18 when she was unable to obtain her driving license. What “slapped him, and brought him back to reality.” So as not to let her albinism put barriers in her way, Lilia tried to be an au pair without immediately saying that she was visually impaired. Which she does not regret, because she considers “take care of children very well”.
“When someone makes a misplaced comment about my disability, I make the person understand that what they are doing cannot be done”
“There are days when I don’t want to make the efforts I make every day”, exclaims the young woman. This is why she explains that some days she doesn’t let anything go, because she doesn’t have enough energy to fight. According to her, the word on albinism is being released in particular through social networks. “Keep in mind that if something happens to you, whether it be a handicap, a disappointment in love, or something else, you are never alone, and that it has necessarily already happened to someone, and that it will definitely happen to someone one day,” concludes the young woman. A way of thinking that she finds super reassuring.
