Censoring the truth about Down Syndrome hurts everyone

By Leticia Velasquez, Co-founder, KIDS (Keep Infants with Down Syndrome)

downsyndromehappy6reLast month the French State Council, the nation’s highest administrative court, upheld a decision by a broadcasting tribunal to ban a YouTube video made by an Italian Down syndrome association entitled “Dear Future Mom.” The two-minute video consists of a series of positive statements about their lives by children and young adults who have Down syndrome. They are responding to an email received from a mom who has just received a prenatal diagnosis of Down syndrome and is concerned that life will be difficult for her child.

The engaging video, filmed for World Down Syndrome Day in March of 2014, went viral with six million views in a couple of months. It was replayed worldwide by news outlets on television. But now it will not be permitted in France to preserve a post-abortive mother’s an emotional safe space.

The children and young adults’ happiness may cause pain to women who have aborted babies because of Down syndrome, the French State Council argued, the video must be banned.

In an age when we no longer institutionalize people with Down syndrome, and they are breaking barriers to school, social and employment inclusion, this comes as a slap in the face. It also begs the question: has society’s attitude improved when the very existence of people with Down syndrome causes offence to someone? When upwards of 90% of women expecting a child with Down syndrome abort them for fear of having an unhappy life, how much progress have we made?

In her biography of her father French pediatrician and geneticist Dr. Jerome Lejeune, who discovered the cause of Down syndrome in 1959, Clara Lejeune Gaymard, describes the attitude in France towards those with Down syndrome. People would cross the street if they saw someone with Down syndrome, the thinking was that it was contagious or the result of the mother’s syphilis.

Dr. Lejeune’s discovery of the extra 21st chromosome was meant to open new roads to research for a cure. However, Dr. Lejeune was brokenhearted when his discovery was used to develop methods to detect Down syndrome in the womb for the purpose of eliminating these innocent lives. He devoted the rest of his life to research for a cure.

“I see only one way left to save them, and that is to cure them. The task is immense—but so is Hope.”

But the medical community’s knee jerk reaction to a prenatal diagnosis of Down syndrome is to recommend abortion. Add to this that parents are overwhelmed by the negative stereotypes which still exist about Down syndrome, there are fewer and fewer people who have such children in the community, and too often moms give in to despair and abort their baby.

It’s a tragedy not only because it ends a baby’s life, and wounds the parents, but also because the world misses out on the gifts such children offer society. We are all diminished.

I have my own story of being shunned because of a mother’s pain. My youngest daughter, Christina, age 14, has Down syndrome. She was only a newborn baby when we brought her to her sister’s softball game in a small town.

It was early spring and I had bundled Chrissy up in her stroller, but the air was not the only cold breeze I felt that afternoon. I had the feeling that some of the mothers were uncomfortable, but I had no idea why. I felt awkward, and assumed it was my fault. What actually happened is that the presence of my infant daughter made a post-abortive mom of a child with Down syndrome uncomfortable. (She was the coach’s sister.)

We moved from that town without realizing we’d been banned. We found out years later why the coach’s wife stopped informing us of softball registration. Why, no matter when we asked to register, we always just “missed the deadline.”

The coach’s wife had tried to talk her sister-in-law out of the abortion, yet when she failed, she felt compelled to shield her from pain of seeing my little baby happily enjoying the spring afternoon. In so doing she also denied Chrissy’s two older sisters years of softball games. We were hurt that they never shared this with us so we could understand why my girls were shunned in our community.

We merely felt rejected and began to distance ourselves from our peers, not wanting to face more rejection. The local public kindergarten sent us to a special needs school in an old army barracks. It was horrible and we moved to another state which had inclusive education.

We went on to another state, and enrolled Christina in our local elementary school where for four years she was very happy, and had many friends. She is home educated now and despite many physical and intellectual issues, and some social challenges, she enjoys her life with gusto and is a blessing to all who meet her. She has a wonderful life and her family can’t imagine life without her smile and sense of humor.

I wish the media could allow us to could help moms expecting a child with Down syndrome choose life for their children. Or, if they have made the tragic choice of abortion, I wish they would realize their mistake, and reconcile with God. Far better than being enslaved to perpetually battling the pain of a guilty conscience!

I wish that mom had seen “Dear Future Mom” with its powerful reassurance that life, no matter how challenging, has radiant joys and deep belly laughs which make up for the pain.

Please watch this video and share it so that more moms will be inspired to carry their babies to term and know the amazing love of an individual with enhanced chromosomes.