Never Forget the Humanity of Those with Down Syndrome

A s we celebrate World Down Syndrome Day, it is time to take stock of how we are living up to our obligation to promote and defend the rights of all persons living with Down Syndrome. In a shocking social-media blunder, the World Health Organization recently sparked widespread outrage by referring to Down Syndrome as a “birth defect,” rather than a naturally occurring genetic difference with which individuals can not only live, but thrive. Since its retraction, this misstep spotlights pervasive misconceptions about the condition, in addition to our failure to safeguard the fundamental human rights of Down Syndrome individuals.

Events around the world over the last year paint a mixed picture of the rights of people with Down Syndrome. On the one hand, the movement has taken a big step forward in popular consciousness with growing inclusivity in the modeling world. Campaigns featuring smiling Down Syndrome faces remind us of the beauty of true diversity, generating significant media exposure and crucial awareness-raising. Such positive steps, however, obscure the dark human-rights crisis beneath the surface. Persons with Down Syndrome remain deprived of the most basic of human rights — the right to life. Put bluntly, this translates as a catastrophic violation of the very right to be born for the Down Syndrome person.

Although individuals with Down Syndrome benefit from an increased life expectancy of about 60 years, in a painful juxtaposition, babies diagnosed in utero with the condition systematically are aborted as a result of their diagnosis — an egregious violation of their human rights, and wholesale discrimination against persons with disabilities. In many parts of the world, Down Syndrome effectively becomes a death sentence for those who receive this diagnosis before birth.

Iceland, infamously, has eradicated its Down Syndrome “problem” by preventing the birth of babies with the condition via abortion. The inevitable conclusion from this abhorrent violation of human rights is that it is better to never have lived, rather than to be born with Down Syndrome. To avoid this fate in the United States, legal prohibitions against abortion on the grounds of disability are imperative, such as this week’s “Unborn Child with Down Syndrome Protection and Education Act” in West Virginia, in addition to a similar law upheld by a Tennessee court last month — a true cause for celebration for every life saved, and a move that will hopefully inspire more protective rulings across the globe.

Abortion on the basis of Down Syndrome and similar conditions is an overt violation of the human rights of persons with disabilities, as recognized under international law. In line with this, the United Nations Committee on the Rights of Persons with Disabilities has urged the United Kingdom to amend an existing law that allows for selective abortion up to birth based on fetal diagnosis of disability. In 2020 alone, the country recorded over 3,000 abortions on the basis of disability. In September 2021, the U.K. High Court ruled that the law was not discriminatory. As of last week, the Court of Appeal will take this matter up again. It is urgent that the Court legally reverse this barbaric human-rights violation, saving the lives of thousands of Down Syndrome babies in the U.K.

For so long as their very right to life is in jeopardy, we can expect discrimination against persons with disabilities to remain rampant. In France, the government is facing legal action at the highest European human-rights body — the European Court of Human Rights, regarding the censorship of 18 Down Syndrome individuals who created a short infomercial about the joys and challenges of life with their condition. Designed to tackle societal stigma, the video was blocked on state television, with the French government denying that it was a “message of general interest,” resulting in the effective “canceling” of people with Down Syndrome and their message.

Titled “Dear Future Mum,” the poignant video quotes an email from an expectant mother, seeking advice: “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 shared their stories to reassure the worried mother that life with Down Syndrome, while hard, could be fulfilling and enriching. Such testimonies fly in the face of the oppressive abortion-centric response to a disability diagnosis, explaining the resultant silencing efforts by the French state.

Abortion on the basis of disability is one of the greatest large-scale human-rights abuses of our time, and one that goes largely unseen. The championing of the rights of people with Down Syndrome must not be limited to a single day of commemoration. As international events generate increased discussion on life with Down Syndrome, and the value of all life in general, we must put an end to the abuses that threaten the very existence of people with disabilities. Let this World Down Syndrome Day be a provocation for us all as we assert, without reserve, that every person has the right to be born, and a subsequent right to life with dignity, regardless of diagnosis or condition.