The world still struggles to accept people with Down syndrome

Last Monday was World Down Syndrome Day. McElhinney’s, the department store in Donegal, celebrated with a display called ‘See Me’ in their Ballybofey shop windows. The slogan was “One More Chromosome to Love”. These were portraits of local children and teenagers with Down syndrome in all their diversity and beauty. So much progress has been made in the past seventy years since these children were frequently institutionalized or denied basic medical interventions.

There is still so much to do. Parents of children with Down syndrome still have to struggle to obtain adequate services and the struggle becomes even more acute when their children emerge from adolescence. Nevertheless, the progress is real.

People with Down syndrome, their friends and families were saddened earlier this month when, on World Birth Defects Day, the World Health Organization (WHO) listed it as the one of the “most common serious birth defects”, grouping the syndrome with congenital heart defects. , neural tube defects and hemoglobin disorders.

It is simply wrong to categorize people with Down syndrome as having one of the most common serious birth defects.

Down syndrome is a genetic difference, an extra chromosome that is expressed very differently in different individuals. While sufferers often have birth defects such as heart problems, it is simply wrong to categorize people with Down syndrome as having one of the most common serious birth defects. The WHO compounded the error by implying that most birth defects are preventable.

The organization has since apologized for “unintentionally [implying] that Down syndrome was preventable through prenatal and neonatal care”. He also apologized for any offenses committed and pledged to continue to provide “appropriate health care, access to specialist services and respectful treatment”. Although WHO removed the original Facebook post, the statement remains on its website.

Perhaps the best response came from a dad who simply tweeted a photo of his daughter, Chloe, captioned “I’m not a birth defect.”

public service film

Members of the Down syndrome community are very aware of the fears that people have. It was Jérôme Lejeune, a French pediatrician and geneticist, together 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 announcement created by a group of 15 people with Down syndrome entitled “Dear future mother”.

It starts with a mother who has just found out her baby has Down Syndrome and is worried about the kind of life her child will have. Young people with Down syndrome reassure her in many languages, including the actor Robin Sevette who declares: “It doesn’t matter who the child is, his mother can be happy! I urge everyone to accept people like me because we are no different from you.

It has been viewed more than seven million times online, but after just two complaints the French Audiovisual Council banned it from public television. The decision was upheld by the French Council of State, which said the video could “disturb the conscience of women who, in accordance with the law, have made personal life choices”.

The decision is being challenged in the European Court of Human Rights (ECHR) as a violation of the rights of people with Down syndrome to freedom of expression.

“Stereotypical disability”

Another disturbing case is also in the preliminary phase before the ECHR, ML c. Poland. In 2018, the United Nations Committee on the Rights of Persons with Disabilities (CRPD), the majority of whose members are persons with disabilities, stated that “laws that explicitly permit abortion on the basis of disability violate the Convention on rights of persons with disabilities”. The committee says abortion on this ground “perpetuates stereotypical notions of disability as incompatible with a good life.”

In October 2020, the Polish Constitutional Court ruled that legal abortion on grounds of disability is incompatible with the Polish constitution. Since then, a series of cases have been brought before the ECHR, some of them by people protesting that their rights have been hypothetically violated by this ban, even if they are not pregnant.

The case of ML. is different. The applicant is a woman who, when she was more than 15 weeks pregnant, was refused a planned abortion due to the decision of the Polish Constitutional Court. She opted to travel to the Netherlands instead, at a cost of €1,220. She claims that as a result, she is the victim of a violation of Articles 3 (prohibition of torture and inhuman treatment) and 8 (right to respect for private and family life) of the European Convention on Human Rights. .

Our failure to push for better support services and for a more visible representation of genetic diversity has led people to fear the birth of children with Down syndrome.

Let’s not point the finger at the mother taking the case. It is more than possible that our failure to push for better support services and for a more visible representation of genetic diversity has led people to fear the birth of children with Down syndrome.

The glowing faces in McElhinney’s shop windows and in the Dear Future Mom video are the best antidote to those fears. If the ECHR finds no violation of freedom of expression in the ban on the video or reprimands the Polish government for its ban on abortion on grounds of disability, it will be tragic proof that we were wrong about progress that we so fondly believe have done.