Not Ready to Give Up on Down Syndrome

People With Trisomy 21 Are Charming Even a Society Eager to Abort Them

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By Elizabeth Lev

ROME, FEB. 2, 2012 (Zenit.org).- The subject of Down syndrome has appeared many times in this column, much to do with the fact my son has Trisomy 21. The stories have rarely been cheerful, mostly because the prognosis for the future of people with Trisomy 21 is poor. With an 80% abortion rate for children detected with the condition in the womb, it seems that the modern world believes it can eradicate Down syndrome as if it were small pox or the bubonic plague.

My own experience in Italy is that doctors and institutions keep poor records of how people with Trisomy 21 develop. They seem uninterested in learning how to help future generations, and I fear that this is because they believe there won’t be future generations.

ZENIT published a very worrisome interview last week with Jean-Marie Le Méné, president of the Jérôme Lejeune Foundation. Mr. Le Méné participated in the March for Life in order to draw attention to the plight of the unborn with Trisomy 21 in France, which now has a 96% abortion rate for children with Down syndrome.

But over the last few months I have heard several stories that bring promising news, perhaps a sign that Down is not out yet.

* * *

Fashion models today, role models tomorrow

Six-year-old Ryan Langston has taken the advertising scene by storm. His Trisomy traits of almond-shaped eyes and tiny nose are charmingly complemented by blue eyes and blond hair in a fabulous haircut. Featured in advertising campaigns for both Target and the very upscale Nordstroms, Ryan cavorts and poses with other children, flashing a winning smile.

His parents, Amanda and Jim Langston from New Jersey, explained in an msnbc interview last Jan. 16 that Ryan has been modeling since he was 3. He likes being on the set and understands that he poses well. They credit the support of Ryan’s twin brother Ian for Ryan’s successful career, recognizing that this child has drawn the family closer and brought out its best.

Ryan, like almost half of Down syndrome children, was born with a serious heart defect and underwent open heart surgery at three months of age. This potential defect is often presented as a reason to abort a Down syndrome child. But Amanda and Jim didn’t listen and a star was born.

His mother pointed out what few people realize about people with Trisomy 21: While many think only of intellectual disability and heart defects, Amanda Langston sees that Ryan “has a beautiful little light and I think that’s what people are seeing.’

The most remarkable thing about the Target and Nordstrom ads is that Ryan is included without any special attention drawn to his condition. He is not a model for “disability duds” or “Trisomy togs”; he is just a kid. And that is the most important message of all: Trisomers are people too.

Hiring Ryan, however, was not a first for these retail giants. Target and Nordstrom have been using Down children since the 1990s. For their part, last month the Pampers diaper company released a television spot featuring many babies, including one with Trisomy 21, in their “every baby is a miracle” campaign.

Nor is Ryan the only Down star. Two-year-old Taya Kennedy, from Bradford in Northern England, was one of 50 children out of 2,000 to be selected by the Urban Angels modeling agency in London, and has already been requested for campaigns for a toy store, Early Learning Centre and Mothercare, which sells children’s clothes.

The Ryan frenzy that is sweeping mainstream media is due in no small part to a father of a Down syndrome child who posted the news of the Target ads on his blog, http://noahsdad.com/nordstrom/

The incredible response to this post signals that Americans are not quite ready to give up on Down yet.

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Ready for their close-up

Television and movies have long had a flirtation with Trisomy 21 actors.

Christopher Burke played Charles “Corky” Thatcher on the television series Life Goes On, from 1989 to 1993, before becoming the Goodwill Ambassador for the National Down Syndrome Society.

Roberto Benigni cast Alessandro De Santis as his friend and confidant in the 1991 film Johnny Stecchino, and in 1996, Stephane Ginnsz became the first Down syndrome actor to ever star in a feature film in DUO, directed by his brother Alex Ginnsz and produced with the help of Martin Scorsese.

In 2009, the hit television series Glee cast Down syndrome actress Lauren Potter as the reoccurring character Becky, a cheerleader on the school team Cheerio.

Lauren found her way to the silver screen through The Down syndrome Association of Los Angeles, a nonprofit agency that offers programs, resources, education, counseling and more.

The in-house talent agency, Hearts and Hands, which helps casting directors find actors with Down syndrome, proposed Lauren for the part. Her feisty and fun character, which faces both normal and special challenges, has brought Trisomy 21 into the households of 10 million viewers per episode.

In an interview, Lauren praised the choice to cast a Trisomy 21 character, “I think it was a brilliant idea. It tells Americans that it’s really good to have a daughter or son who has Down syndrome.”

On the big screen, the Venice film festival welcomed an offbeat film featuring a Down syndrome child. Café de Flore, starring Vanessa Paradis, companion of Johnny Depp, is a French-Canadian production released in November of 2011.

The convoluted plot involves love stories that cross time and distance. One recounts a man torn between two women in contemporary Montreal, while the other follows a mother (Paradis) raising her Down syndrome son in 1960s Paris. Marin Gerrier, the actor who plays the son Laurent, was nominated for the 2012 Canadian Film Academy’s Genie award for best supporting actor.

Despite the determined effort of some elements of modern culture to keep Down people out of sight and out of society, these great success stories help keep this endangered minority in the world spotlight.

* * *

Not to be toyed with

One of the greatest challenges for parents of Down syndrome children is finding the best education. Whether choosing special schools that tailor to a student’s specific needs or the experience of integration with other children in a regular school system, parents have hard decisions to make. Many find little assistance from the outside world to form a fun educational environment for their children.

In 2008, Toy-R-Us, one of the largest toy distributors in the world, developed a special catalogue of toys geared for differently-abled kids. The selection is intended to help parents, friends and gift-givers select appropriate toys for children with special needs.

In 2011, the Toy-R-Us catalogue got a celebrity spokeswoman, Eva Longoria, star of the hit television series, Desperate Housewives. Ms. Longoria, who has a sister with Down syndrome, has dedicated much of her time and resources to raising awareness for special needs children. In 2006, She founded Eva’s Heroes, an after-school program for special needs ki
ds in San Antonio, in her home state of Texas.

Ms. Longoria has spoken candidly about her Down syndrome sibling in many interviews, crediting her sister with making her a better person.

“As children we always knew that someone else came first because she had special needs and we were taught from when we were babies to respect and understand that,” the actress said in a 2006 interview. “It is a hard lesson to take when you are little but as you grow older you just appreciate how important it is to think of someone else first.”

Ms. Longoria said that her fame and fortune made her want to help others like her sister, giving them a place to play and interact after school especially if they had working parents, so she “started in her backyard” with Eva’s Heroes.

How I wish we had an Eva Longoria in Rome!

* * *

A new champion

The celebrity spokespeople and media attention are all a very positive sign for the future of people with Trisomy 21, but nothing beats having a 2,000-year-old institution behind you. On Jan. 24, Archbishop Charles Chaput published a beautiful and thoughtful essay on people with disabilities, not coincidentally timed alongside the March for Life and the Anniversary of Roe vs. Wade.

Written in the same clear, compassionate style for which the new archbishop of Philadelphia is known, the essay is beautifully researched and draws in a philosophical thread that should awaken every person to the fact that the fight to save the endangered present and future Trisomy 21 population is also a critical battle over the soul of a nation.

As a mother, an American and a Catholic, I am grateful to all these examples of the good that human beings can do through their works and witness, and even through their mere existence.

* * *

Elizabeth Lev teaches Christian art and architecture at Duquesne University’s Italian campus and University of St. Thomas’ Catholic Studies program. Her new book, “The Tigress of Forlì: Renaissance Italy’s Most Courageous and Notorious Countess, Caterina Riario Sforza de’ Medici” was published by Harcourt, Mifflin Houghton Press this fall. She can be reached at lizlev@zenit.org

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