On the 21st of March, the United Nations celebrated World Down Syndrome Day! This day marked an amazing opportunity to bring to the forefront testimonials and viable experiences while raising awareness of this issue, which is so often put aside to allow more “relevant” issues (such as the International Day of Happiness which, and is not a joke, and did take place on the 20th!)
The conference – entitled “the right to work” was filled with presentations from people affected by Down Syndrome, including: disability organizations, employers, and service providers from all over the world that came to share best practices. The event culminated with a touching testimony by a South African self-advocate. She made her debut stating how proud she was of being affected by Down Syndrome and how lucky she was since there was a name (Trisomy 21) for her problem. She stated that the best gift that she had ever received was life and to be praised and accepted unconditionally by her parents. Raising her voice to highlight the importance of always being true to oneself, she reassured the audience of how “the main obstacle in life is not to change the circumstances but instead the way you look at them”. With great courage and disarming simplicity she told her story and despite the challenges she had to face and is still facing, she has never given up and never was discouraged by her situation nor ever felt sorry for herself. “We deserve to live and can have a full life. I feel so sad when I think of all those unborn children who do not have the possibility to live… Why the Lord blessed me so much is a mystery, yet all should be thankful since each one of us is special“.
Another man once spoke the same language, a man who not only was the father of modern genetics, but also was the first to discover the cause of Down Syndrome (i.e. an extra copy of chromosome 21). A doctor, pediatrician, and Catholic named Jérôme Lejeune gave the most dignified witness of how “the main obstacle in life is not to change the circumstances but instead it is the way you look at them”. Lejeune unfortunately was ignored on this celebration day at the United Nations (might have been for his unconditional acceptance of life, his praise for our unworthy and yet infinite existence, or most probably for his outspoken firm stance against abortion). Despite this disconcerting silenced memory, I would like to pay special tribute to this man.
As a pediatrician, Lejeune’s main objective was to know in order to cure and therefore to take care of people. The foundations on which he always stood firm and which were at the very core of his culture-of-life stances, were simply his strong belief and given biological proof that each man is “unique” and “irreplaceable” and as such must be guarded. The image of the irreducible uniqueness of all human beings so dear to Lejeune was the profound consciousness that we might not have been here, but yet we are. The gaze on reality cannot be anything else than a continuous and inexhaustible source of surprise and question. This mystery which is so feared in today’s society took up the name of someone who loves you unconditionally: as Lejeune was “father” to his patients, so were the families of all those whom I met on the 21st of March – men and women who were able to recognize the uniqueness of their children so that they could also discover themselves as sons and daughters!
By Margherita Ciantia, Intern at WYA HQ, New York.
