Monday night, it is the birthday of my friend. We decided to go for a drink at a bar. It was at this point that I noticed Damien. He has white hair and clear skin; he’s having a good time with his friends... I stare at him for a long time, noticing that he is an albino. As you may have noticed I like their unusual physical appearance; I had already done a photoshoot with Julien, who is also affected by this genetic anomaly.
I decided to have a chat with him; an appointment is fixed 6 hours later.
On November 10, 2015 - Mercure Hotel Les Sables d'Olonne
Damien is 22 years old and suffers from Oculo-cutaneous albinism. This is a genetic disorder linked to chromosome 9 that determines skin pigmentation and consequently hair color and visual acuity. The vision is faulty but never totally absent in most people with albinism. This gene can exist in anyone, but it is not necessarily active. If two people carrying the gene met, together they can produce albino children.
"It’s hard to tell you how my vision is because I’ve never seen like you. From a distance, my vision does not allow me to have access to details of things or even to recognize people. What is small or discreet will take me a lot of effort. Sometimes, I don’t see at more than three meters away… It happens mostly at night or when the light is too intense. Texts that I read, need to be displayed in 10 or 12 Arial."
"My skin is clear because I have no melanin, I am very sensitive to UV, I have to protect myself with a strong sunscreen because I can get 3rd degrees burn on my skin if I expose myself too much in the sun. From April to October, it is complicated, I have hours to avoid during summer. It is a way of life, you learn to adapt yourself."
Damien grew up in Dijon with his brother who is also an Albino, in a specialised centre called “Pôle Sensoriel et Moteur”. They were raised by many educators because their parents did not have the technical skills to do so…
“Educators have taught us to manage our handicap in everyday life, to be independent and therefore allow us to succeed in life.”
He is sportsman for the French cyclist team for the disabled, but it is not his full-time job. He is also a banker at Bordeaux and has a specially arranged roster, thanks to an occupational integration agreement.
“My work time is shared 50/50 between office and sport. I am paid by the bank and this one is compensated by the State, French Federation Sport for the disabled and the region. I am fortunate to travel, thanks to the sport, through France but also in Europe, the US and Canada. My apartment is empty 3-6 months during the year! My grandmother told me that my luggage has no time to become mouldy!”
I started cycling at 14 years old, and integrated into the French team at 17 years old. I’m cycling in tandem at the back and my teammate drives. Right now, we are here to prepare for the Paralympic Games in Rio 2016. But in sport for the disabled, you have to be personally involved. We found some partners like Retina, la Poste, FTW33, to finance a portion of our equipment, travel, accommodation and of course we need to have some free time to move where the races are throughout the year… But it is difficult to cover all the costs with the current economic environment, notably the training sessions and competitions which are out of the France team schedule.
Damien seems to have this sporting unbiased side in everyday life and looks resolved to succeed. I have the feeling that his disability has made him very determined, he’s sure of his choices and ready to take on every obstacle! Has it made him stronger?
“Handicap is often crap – laughs – sometimes it’s comfortable… People around me can be overprotective or over caring… It can be embarrassing because people think I am not able to do this or that and don’t always leave me the opportunity to express myself.”
“Personally, I do not consider myself disabled except when I reached my limits. I discovered this at 17 years old.”
I feel behind his determination, some reservation… How do people react to his difference?
“People will stare at me intensively out of curiosity… I make a “freak” effect; it is difficult to integrate myself into society… I experienced some bullying, kids at school, would throw me the food in the school restaurant, laughed at me, and insulted me freely… One day, I decided to not let go and fought back… This is not a solution to intolerance but somewhat it has worked out… Later, I grew up and learned with time to ignore the morons. But unfortunately, there will always be people who will not consider me as a human being…”
“My relationships are complicated, contact is difficult. This may seem strange to you, but growing up, I developed a 6th sense among people I know. I feel their way of being; understand their attitudes, their emotions. It is sometimes hard to bear because I’m sharing their feelings, the joy, but also the pain, the sadness from my colleague, when she lost her baby, the kindness of my teammates, but also the love that a person carries. That can give some trouble in a couple of relationships as I read their feelings like an open book - well a book written in Arial size 12 – laughs. This is completely uncontrollable and unconscious. My only way to escape from it is to isolate myself from others or to be surrounded by unknown people where the feelings stay blurred.”
“Today, I am fortunate to be here, even if I would like to be as everyone…”
“Specialized centres have been important. They’ve given us the autonomy, all the little things that are so ordinary but essential: tying shoelaces, shaving, getting around town, cook (…), take care of yourself to be open to others and especially so that others open up for us.”
“Unfortunately these centres are likely to disappear as they are no longer part of the State policy due to the current financial crisis. People with disabilities will have to be inserted into conventional institutions, which are not organised to take them.”
Coralie Le Goff, Albalone.