Last Monday was World Down Syndrome Day. McElhinney’s, the Donegal department store, celebrated with an exhibition called “See Me” in their Ballybofey shop windows. The tagline was “One More Chromosome to Love”. It consisted of portraits of local children and teenagers with Down syndrome in all their diversity and loveliness. So much progress has been made in the last seventy years from the times when such children were frequently institutionalised or denied basic medical interventions.
There is still so much to do. Parents of children with Down syndrome still have to struggle for adequate services and the struggle becomes even more acute when their children move out of adolescence. Nonetheless, the progress is real.
Individuals with Down syndrome and their friends and families were distressed earlier this month when on World Birth Defects Day, the World Health Organisation (WHO) categorised it as one of the "most common severe birth defects", lumping the syndrome in with congenital heart defects, neural tube defects and haemoglobin disorders.
Categorising individuals with Down syndrome as having one of the most common severe birth defects is simply wrong
Down syndrome is a genetic difference, an additional chromosome that expresses itself very differently in individuals. While people with it often have accompanying birth defects such as heart problems, categorising individuals with Down syndrome as having one of the most common severe birth defects is simply wrong. The WHO compounded the error by implying that most birth defects are preventable.
The organisation has since apologised for "unintentionally [implying] that Down syndrome was preventable through antenatal and newborn care". It also apologised for any offence caused and pledged to continue to provide "appropriate healthcare, access to specialised services and respectful treatment". Although the WHO has retracted the original social Facebook post, the statement remains on its website.
Perhaps the best response came from a dad who simply tweeted a picture of his daughter, Chloe, captioned with “I am not a birth defect”.
Public service film
People in the Down syndrome community are very aware of the fears that people have. It was Jérôme Lejeune, the French paediatrician and geneticist, along with Marthe Gautier, who in 1958 originally discovered that the extra chromosome caused Down syndrome. In 2014, the Jérôme Lejeune Foundation supported a public service advertisement created by a group of 15 individuals with Down syndrome called "Dear future mom".
It begins with a mother who has just discovered that her baby has Down syndrome and is worried about what kind of life her child will have. The young people with Down syndrome reassure her in many different languages, including actor Robin Sevette, who declares: "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."
It was viewed over seven million times online but after just two complaints, the French Broadcasting Council banned it from state television. The decision was upheld by the French Council of State, which declared that the video could “disturb the conscience of women who, in accordance with the law, have made personal life choices”.
The ruling is being challenged at the European Court of Human Rights, (ECHR) as an infringement of the rights of people with Down syndrome to freedom of expression.
‘Stereotyping disability’
Another disturbing case is also in the preliminary stages before the ECHR, ML v Poland. In 2018, the UN Committee on the Rights of Persons with Disabilities (CRPD) where the majority of members are individuals with disabilities, stated that "laws that explicitly permit abortion on the basis of disability violate the Convention on the Rights of Persons with Disabilities". The committee says that abortion on this ground "perpetuates notions of stereotyping disability as incompatible with a good life".
In October 2020, the Polish Constitutional Tribunal ruled that legal abortion on the ground of disability was incompatible with the Polish constitution. Since then, a raft of cases has been taken to the ECHR, some of them by people protesting that their rights have been hypothetically violated by this ban, even though they are not pregnant.
The case of ML. is different. The applicant is a woman who when more than 15 weeks pregnant was denied a scheduled abortion because of the decision of the Polish Constitutional Tribunal. She chose to travel to the Netherlands instead, at a cost of €1,220. She claims that as a result, she is a victim of a breach of articles 3 (prohibition of torture and inhumane treatment), and 8 (right to respect of private and family life) of the European Convention of Human Rights.
Our failure to lobby for better support services, and for a more visible representation of genetic diversity, has led to people fearing the birth of children with Down syndrome
Let us not point the finger at the mother taking the case. It is more than possible that our failure to lobby for better support services, and for a more visible representation of genetic diversity, has led to people fearing the birth of children with Down syndrome.
The glowing faces in the windows of McElhinney’s shop, and in the Dear Future Mom video, are the best antidote to these fears. If the ECHR finds no breach of freedom of expression in the banning of the video or reprimands the Polish government for its ban on abortion on the grounds of disability, it will be tragic proof that we have deluded ourselves about the progress we so fondly believe we have made.