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“White is not the absence of color, but the fullness of love, goodness and warmth”. Read it like this the opening words of the poem written by Alessio, a young man who was only 12 at the time of writing, and continues, “We are beautiful, strong and smiling and the sun makes us even brighter. The sun seems an enemy, but in reality there is a friend. Even if we put on kilos of cream, we play with the sun. We also go to the sea, but sometimes we get burned. With our strength we challenge light, sun and heat, but we blind hearts with our candor ”.
His verses express all the courage to accept and face a rare genetic disease that will accompany him throughout his life: albinism.
The poem, in its integral form, can be read on the official website of Albinit, an Italian association, made up of a small group of people, united by the same mission: to help people overcome small and big obstacles that albinism entails.
What is albinism
Albinism is a rare disease, a genetic abnormality easily recognized by the absence or little reduced melanin in the skin, hair, hair and eyes. It is spread evenly throughout the world. However, as it is still little studied and rarely treated, the data estimate of the spread of this disease is not accurate.
In Europe, however, it is estimated that one in 17,000 people are affected by albinism. In Africa, however, the figures are much higher: one in 2000 suffers from albinism.
Although everyone, more or less, we know how to recognize an albino person from those most striking elements from an aesthetic point of view, many ignore, however, the problems and difficulties related to this disease. Associations such as Albinit and study and research websites such as Albinismo.it provide us with a lot of information about it.
We read, in fact, that the skin of albinos, lacking pigmentation, must be protected from the sun’s rays with special creams and clothing to avoid the onset of skin tumors. Right on the website of the Albinit association, a series of rules and indications for the use of sun creams by experts have been published. We also read that vision is impaired. Especially from far and near vision is poor and in most cases albino people suffer from low vision.
To all this is added the prejudice and the stigma of being different which, in countries like Africa, have given rise to persecutions, death sentences and mutilations. However, preconceptions are also widespread in Western countries: in Italy these people come together and consciously choose to live in a world apart, to go unnoticed, because perhaps it is better this way.
Fortunately, however, thanks to the commitment of associations and organizations, the situation is changing. What matters, in fact, is to educate others about this rare genetic disease, however support inclusionand and eliminate, forever, all sorts of discrimination.
A tragic window on Africa
Albinism, in Africa, is treated as one divine punishment. You will understand that this overview creates hatred, prejudice and social discrimination against those born with this disease. Often, after childbirth, women are abandoned by their partners and, because of this awareness, it is they who, at times, abandon their children.
Furthermore, cultural poverty has spread the belief that an albino child is nothing more than the result of a woman’s betrayal with a white man. Even when, however, albino children are accepted by the family, fail to integrate socially in the community.
International Albinism Day
Albinos suffer from the oldest, most stereotyped and most widespread judgment in the world: that of the color of the skin. Racism was, and still is, one of the blackest pages in the entire history of humanity, which saw dark-skinned people persecuted.
We can say that the same happens with those who, on the other hand, have too light skin, hair and eyes. Albinism is so rare, however, that it is often not talked about and the consequence is that we ignore it what happens in the world and under our eyes. Stop and think for a moment: how many albino people do you know? How many do you see around the street? Certainly few, but this does not mean that they do not exist.
Finding ourselves in front of albino people often amazes us, precisely because of the great aesthetic diversity that characterizes these people. And, perhaps, feeding her isn’t all that wrong. Wrong is instead, turning human beings into targets of discrimination or prejudice.
For this reason, to protect albino people, the United Nations General Assembly, with a resolution of 2013, established the International day of albinism which is celebrated every June 13. This is a fundamental step to combat social stigma, discrimination, bullying and the very serious violence of some countries, in favor of the inclusiveness of all.
One story among many
On the occasion of the second National Conference on albinism, Vincenzo Giarratana, promoter and organizer of this event, told about his “livable diversity”, with a good dose of healthy irony that perhaps sweeps away the nightmare that man has lived.
The family, in fact, forced him to dye your hair red because she was ashamed of him. After 28 years of refusal, which inevitably became his too, Vincenzo rebelled. Now he is on the front line for “those like him”, to help them overcome fear and prejudice.
There are many stories to tell, but we chose this one. So that it is clear that the revolution must begin with knowledge and culture, from the understanding and simple acceptance that we are all different! And beautiful in the same way.
After all, Vincenzo also declared himself to be “the most beautiful albino in Italy”. On Light! she told her story: “My family did not accept this rare disease. I grew up doing everything to hide it ”- he continues – Because an albino child at home was a disgrace. To hide.
Vincenzo’s story is a story of courage and acceptance, of managing a disease that cannot and must not be hidden only out of fear. And there are many others, like yours, all to be known, to raise public awareness and for promote inclusivity.
Albinism and inclusiveness
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