This is a story about women and consent; about questions asked and questions that cannot be asked; about a fundamental legal principle that a sort of sanitized, polite modern eugenics would like to silence.
A French woman, pregnant with a child who has Down syndrome, reaches out to CoorDown (a network of organizations for people with Down syndrome). She doesn't know what to expect, so she asks for information about what her daughter's future might hold. The association responds by making the short film Dear Future Mom (2014): fifteen people with this genetic condition from different countries speak directly. Without downplaying the real difficulties they face, they explain that their lives can be happy and meaningful. Shown at the United Nations and widely awarded—including major recognition at the Cannes Film Festival and the Weak Link award at the Capodarco Festival for best social campaign distributed online—this letter to expectant mothers aims to inform women about what it means to live with Down syndrome. It asks viewers, through the voices of people living with the condition themselves, to reconsider the many prejudices surrounding it.
The film was praised almost everywhere. In France alone, it ran into censorship. In the country of Enlightenment, the Superior Council of Broadcasting (CSA) banned it from television, arguing that "the film cannot be considered a message of general interest, and its purpose may appear ambiguous, incapable of generating spontaneous and consensual agreement." The CSA added that the short could "disturb the conscience of women who, in accordance with the law, have made different personal life choices." Making clear they were not launching a pro-life campaign, the Jérôme Lejeune Foundation (a member of CoorDown) pursued a legal battle against the ruling. While seeking to protect the feelings of women who chose to abort a fetus with Down syndrome, the foundation argued that the CSA was denying people with Down syndrome the freedom of expression guaranteed by the UN Convention on the Rights of Persons with Disabilities—the right to speak, to be heard, and to express their point of view.
But just recently, the European Court of Human Rights (ECtHR) declared the case inadmissible. According to Strasbourg, the applicants could not be considered victims under the European Convention on Human Rights. By refusing to rule on the substance of the case, the ECtHR allowed the ban to stand in France (though the film can still be shown there if accompanied by framing or context).
Dear Future Mom, born to answer one simple question, stands guilty of informing—of clarifying something that is unknown or poorly understood. The law says that consent, to be legally valid, must be free and informed. The state cannot force someone to gather information before deciding. But surely it cannot prevent someone from doing so in the name of protecting those who made different choices. Each of us makes decisions we later regret, decisions we may someday regret. Does the state then step in to keep us from seeing clearly?
Something darker seems at work. Could it be that disability carries a cost—economic, social, political—that the state would rather avoid? Let's be clear: we are not contesting a woman's right to choose whether to continue a pregnancy. We are raising a question. An order that strips women of the ability to form their consent freely and with full information—might it be suspending that fundamental right in the name of a polite, sanitized eugenics? Do the horrors of "lives unworthy of being lived" still echo faintly today?