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WORLD DOWN SYNDROME DAY - France taken to Europe’s top court after censoring people with Down Syndrome

  • Disability rights organisation faced discrimination after video speaking about life with Down Syndrome was censored on state television channel 
  • Case could set a precedent for protecting freedom of expression, and against the stigmatization of persons with Down Syndrome across Europe

STRASBOURG (18 March 2022) – The French government is facing legal action at the European Court of Human Rights after censoring of eighteen people with Down Syndrome.

The group had created a short infomercial about the joys and challenges of life with their condition, in order to tackle societal stigma. Fondation Jérôme Lejeune, the organisation which has, for years, set the standard in research and care for people with Down Syndrome, supported the initiative and broadcast the message on several platforms in France. Yet, after a French public authority deemed the video to not be a “message of general interest”, the foundation were prevented from sharing their message on state television.

“ADF International is proud to support Fondation Jérôme Lejeune in calling out discrimination against people with Down Syndrome. Freedom of speech is the foundation of a democratic society, protected by international human rights law. Why censor somebody for speaking out about their life with a disability? We hope that the court will recognise that these voices are of immensely high value, and make a stand for the rights of persons with disabilities across Europe,” said Jean-Paul Van De Walle, legal counsel for ADF International, who are representing the disability group before the court.

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Sharing about life with Down Syndrome “not a message of general interest”, says French government

The video, titled “Dear Future Mum”, begins by quoting an email from a pregnant mother, seeking advice. Her message read, “I’m expecting a baby. I’ve discovered he’ll have Down Syndrome. I’m scared: what kind of life will my child have?”. In response, people with Down Syndrome share their stories, their joys and their challenges to reassure the worried mother that life with Down Syndrome can be fulfilling and enriching.

“No matter who the child is, their mother can be happy! I urge everyone to accept people like me because we are no different from you,” said Robin Sevette, Actor with Down Syndrome, featured in the infomercial ‘Dear Future Mum’.

For some time, Fondation Jérôme Lejeune shared this encouraging footage across various French media platforms as a “message of general interest”.

That was until the French government issued an opinion to say that it was not in fact such a message. It claimed the video would cause offense to women who had chosen to abort their children with disabilities. In France, 96 percent of pre-born children with a Down syndrome diagnosis are aborted. 

Suddenly, the state television channel refused to broadcast the video any more.

Advocates across Europe call for end to discrimination against Down Syndrome

In 2019, some 104 000 children were born with congenital disorders in the EU, representing 2.5% of all births in that year. Data from 2015 estimates the population of persons with Down Syndrome in Europe to be at 417,000. Yet, widespread discrimination and stigmatization remain.

Last week, the World Health Organisation was forced to apologise for incorrectly implying that Down Syndrome is a “birth defect” which is “preventable” through antenatal and newborn care. Parents of children with Down syndrome were particularly vocal in calling out the “ignorant” use of language which according to experts, can play a critical role in perpetuating stigma and discrimination. Down Syndrome is a genetic disorder, not a birth defect.

Meanwhile in the UK, a 26-year-old woman with Down Syndrome is taking legal action against the government for upholding a law which allows for children with the condition to be aborted up until birth; compared to the 24-week gestation limit for other children.

 

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