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Mister President of the CSA, defend them!

Published on 03/31/2015 in Bioethical

Mariette eng

 

At the end of January, Mariette, a law student, decided to defend the freedom of expression of people living with Down Syndrome, at the French national moot court competition for human rights at the Memorial in Caen. Encounter with this student advocate for life

Why did you choose baffled freedom of expression as a subject for your plea?

The CSA censure hit me like a bomb. I could not believe it. Being the elder sister of an adorable little girl with Down Syndrome, I am aware of how difficult it is for people with Down Syndrome to be accepted the way they are. So, the CSA’s censure made me really angry, all the more so as it was founded on incomprehensible motives. I am really disappointed to realise that, today, Down Syndrome is put aside by our institutions. For me, by denying people with Down Syndrome their right to speak freely on television, the CSA does not support them, when, actually, it is one of the main roles of this administrative authority. Faced with this unjust decision, I needed to express my deepest deception. This plea was also an opportunity to express a fundamental value I was taught: the respect of each person whatever his/her difference. Finally, I also really wanted to express the idea given out in the “Dear Future Mom” publicity spot, according to which Down Syndrome and happiness are not incompatible.

Have you had any (positive/negative) feedback concerning your plea during the competition?

By choosing freedom of expression of people with Down Syndrome, I was aware that my subject was unconventional. However, I did not do this for the competition in itself but rather to express my convictions. I actually think the originality of my subject differentiated me from the other candidates, who mostly pleaded against the infringement of human rights concerning torture and barbaric actions. After I was selected in Versailles, I was pleasantly surprise by the spontaneous congratulations I received by the other law students of my school. I really did not expect people of my generation to appreciate and encourage such a subject. This is true hope for the future! At the memorial of Caen, it seemed to me that the enthusiasm was confirmed, even though I had not won yet! Indeed, I was surprise to receive a lot of congratulations from people of very different horizons.

Did you know the Jérôme Lejeune Foundation before knowing about the CSA case?

When she was born, 9 years ago, my parents wanted her to be followed by a physician who would also be a specialist of Down Syndrome. They thus became close to the Foundation and were warmly welcomed by Doctor Jeanne Toulas. Back then, the paediatrician of the Foundation, Dr. Toulas helped them walk down the path of Down Syndrome. They found the Lejeune Institute to be a true place of comfort, a place where they were listened to.

 


 « Baffled freedom of expression »: extract of the plea of Mariette Guerrien-Chevaucherie

Today, we are not on the other side of the world, in the darkness of Guantanamo. We are in Paris, in France, in the cradle of what makes us proud, human rights.
On June 25th, 2014, the CSA censured “Dear Future Mom”, a short film made to raise awareness of Down Syndrome, in which people living with Down Syndrome tell us of their happiness.
The Council censured this testimony by considering that it could not be considered as an advertising spot. Though it was broadcasted for free, it cannot be seen as a message of public interest, because as it is addressed to a future mother, its purpose “can seem ambiguous, and may not generate spontaneous support from viewers and consent to its content”.
Because they appeared to be happy, people with Down Syndrome found themselves stripped of their right to express themselves freely on advertising screens.
On this basis, I would like to report to you the non-respect of the article 14 of the Convention which prohibits discrimination.
As a means to justification, the CSA put forward three arguments.
Firstly, it considers that this message is not of public interest. But what is public interest? Public interest is the interest of a society as a whole, yours, mine, the society of disabled people.
My opinion is that it is of people’s interest that “the ability to spread happiness that children with Down Syndrome have” is known by all.
Secondly, the CSA argues that the purpose of this message “can seem ambiguous, and may not generate spontaneous support from viewers and consent to its content”.
So yes, this video can make you uncomfortable. It makes you feel awkward. It makes you feel guilty. Shocking videos are broadcasted on television screens and, in particular, short films concerning road safety, which sends shivers down one’s spine. Who would ever dare to say they are meaningless? Who would ever dare to say that they don’t make bad drivers feel guilty?
What right do they have to say that a person’s words must be expressed in a specific context? So, because Inès has Down Syndrome, her freedom of speech is restricted, nicely arranged in a scientific documentary. Down Syndrome scares people because people do not know about it, because it puts an emphasis on difference, because it is not normal. But anyway, what is normal?
Mister President of the CSA, defend them! Defend the right of disabled people to express themselves freely on all possible communication channels; defend their right to make themselves known, to make themselves loved!
By restricting their freedom of expression, you condemn them to be forgotten; the people have the right to know that one can be disabled and happy
From you, I wish no pity or indulgence. It is of wisdom that we are speaking today and that is not something Professor Jérôme Lejeune, pionner of modern genetics and discoverer of Down Syndrome, lacked.
He considered Down Syndrome as the battle of his life. Mister President of the CSA, for the honour of the institution you represent, for the freedom of expression of disabled people, show courage by cancelling your decision.

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