Living well with Down syndrome

Post columnist George Will shares the story of his son Jon, who turns 40 on May 4.

5 Seconds

00:00

Jonathan Frederick Will in the first inning. When Jon was born in May 1972, life expectancy for people with Down syndrome was about 20 years. A doctor told Jon's parents that the first question for them was whether they intended to take Jon home from the hospital.

/ Courtesy of the Will family

Pictured here: Jon in Rome in 1989. Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.

/ Courtesy of the Will family

A portrait of Jon, his sister Victoria, his father George and his brother Geoff. Down syndrome is a congenital condition resulting from a chromosomal defect -- an extra 21st chromosome. It causes varying degrees of mental retardation and some physical abnormalities. In 1972, people with Down syndrome were still commonly called Mongoloids.

/ Courtesy of the Will family

Here, Jon poses with then-Vice President Al Gore. Today, people with Down syndrome are called American citizens, about 400,000 of them, and their life expectancy is now 60. Much has improved. There has, however, been moral regression as well.

/ Courtesy of the Will family

Pictured here: Jon and Tommy Lasorda talk baseball at Spring Training in Vero Beach, Fla. The full garish flowering of the baby boomers' vast sense of entitlement encompasses an entitlement to exemption from nature's mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. This is what happens to 90 percent of those whose parents have prenatal testing...

/ Courtesy of the Will family

... Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as far as humans go.

/ Courtesy of the Will family

Pictured here: Jon with his friend Jon Miller in the Orioles broadcast booth at Memorial Stadium.

/ Courtesy of the Will family

Among the things that have enhanced Jon's life is the Washington Nationals baseball team. Pictured here: Jon hands the Nationals' lineup card to the umpires on Opening Day 2010.

/ Courtesy of the Will family

He enters the clubhouse at Nationals Park a few hours before game time and does a chore or two.

The players, who have climbed to the pinnacle of a steep athletic pyramid, know that although hard work got them there, they have extraordinary aptitudes because they are winners of life's lottery. Major leaguers, all of whom understand what it is to be gifted, have been uniformly and extraordinarily welcoming of Jon, who is not. Except he is, in a way.

/ Courtesy of the Will family

The eldest of four siblings, Jon has seen two brothers and a sister surpass him in size, and acquire cars and college educations. Here, he attends his sister Victoria's 1999 National Cathedral School graduation.

/ Courtesy of the Will family

He, however, with an underdeveloped entitlement mentality, has been equable about life's sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.

/ Courtesy of the Will family

This year, Jon will spend his birthday where every year he spends 81 spring, summer and autumn days, at Nationals Park, in his seat behind the home team's dugout. Pictured here: Jon, in the Nationals clubhouse, with a former baseball owner.

/ Courtesy of the Will family

In this image, Jon sits with his stepmother Mari, his brother David and his father George at the 2006 All-Star game in Pittsburgh. This week, the Phillies will be in town, and Jon will be wishing them ruination, just another man, beer in hand, among equals in the Republic of baseball.

/ Courtesy of the Will family

FEATURED PHOTO GALLERIES

James Gandolfini stars as Tony Soprano in the critically acclaimed HBO series 'The Sopranos.' The show received 16 Emmy nominations Thursday, July 22, 1999, including best dramatic series and best actor for Gandolfini. It is the first cable show ever recognized in the dramatic series category. (AP Photo/HO, HBO, Anthony Nesta) Original Filename: EMMY NOMINATIONS.jpg ORG XMIT: LA109

James Gandolfini dies at 51

James Gandolfini, whose portrayal of a brutal, emotionally delicate mob boss in HBO’s “The Sopranos” helped create one of TV’s greatest drama series and turned...

WASHINGTON, DC - JUNE 19: Vice President Joe Biden speaks before the Frederick Douglass statue now permanently placed in the US Capitol's Emancipation Hall in Washington, DC on June 19, 2013. The statue of the abolition leader was chosen by District residents to represent them in the Capitol because of his stance on self governance according to Del. Eleanor Holmes Norton (D-DC). The statue by artist Steven Weitzman, was blocked from it's placement in the Capitol for years, a victim of rules that stated that only the 50 states can display statues of their favored sons and daughters in the Capitol. The House and Senate passed a resolution last month allowing DC to be represented in Emancipation Hall which features statues of notable leaders nominated by each state. (Photo by Linda Davidson / The Washington Post)

Frederick Douglass statue unveiled in the Capitol

The carving of the famed abolitionist and District advocate finds its place inside the halls of Congress.

TV presenter and conservationist Anneka Tanaka-Svenska wears a hat designed by Louis Mariette during the first day of Royal Ascot, in Berkshire, west of London, on June 18, 2013. The five-day meeting is one of the highlights of the horse racing calendar. Horse racing has been held at the famous Berkshire course since 1711 and tradition is a hallmark of the meeting. Top hats and tails remain compulsory in parts of the course while a daily procession of horse-drawn carriages brings the Queen to the course. AFP PHOTO / ADRIAN DENNISADRIAN DENNIS/AFP/Getty Images

Photos of the day

Royal Ascot, protests in Brazil, Lego exhibition, flooding in India, Cheetah-Cub robot and more.

Two-year old male rat named Dyatlik wears a costume during a rodent exhibition in Minsk, Belarus, Saturday, June 15, 2013. (AP Photo/Sergei Grits)

Animal views

Rodent exhibition, swimming with elephants, Mexico’s feline mayoral candidate and more.

NEW YORK, NY - JUNE 18: Madonna attends the Dolce & Gabbana and The Cinema Society screening of the Epix World premiere of 'Madonna: The MDNA Tour' at The Paris Theatre on June 18, 2013 in New York City. (Photo by Dimitrios Kambouris/Getty Images)

Eye on entertainment

Madonna, Michael Buble, Barbara Streisand, Jackie Chan, Jerry Seinfeld, Estelle and other celebrities.

WASHINGTON, DC - JUNE 14: Johnathon Carrington, valedictorian at Dunbar High School, laughs with family and friends after his school's graduation ceremony at Howard University on Friday, June 14, 2013, in Washington, DC. Carrington, who grew up in Tyler House public-housing apartments and is graduating from one of DC's low-performing high schoolsy, where academic expectations are high. (Photo by Jahi Chikwendiu/The Washington Post)

Johnathon’s journey

Johnathon Carrington graduated Friday as the valedictorian of his neighborhood school, Dunbar High, and is headed to Georgetown University. But Carrington, 17, is nervous, and so are...

In this June 8, 2013 photo, youth compete in the Sao Carlos slum local soccer tournament in Rio de Janeiro, Brazil. The pitch is just dirt and the incandescent lights aren't so bright. But when the boys' feet strike the football in the Sao Carlos slum as night falls every Saturday, big league dreams glow, inflated by the hope of escaping the shantytown with sporting skills. (AP Photo/Felipe Dana)

Brazil’s other soccer fields

With the Confederations Cup opening this week and the World Cup one year away, all eyes are on Brazil, where soccer is arguably played with more passion and art than anywhere else....

Inmates walk at a high-security male prison camp outside Russia's Siberian city of Krasnoyarsk May 14, 2013. High-security male prison camp number 17 is intended to house male inmates who are serving a sentence for the first time, and have been convicted for serious crimes. Prisoners at the facility work in wood and metal processing shops, manufacture furniture, sew clothes and do other kinds of work. They can also take part in educational, sport and cultural programs. Picture taken May 14, 2013. REUTERS/Ilya Naymushin (RUSSIA - Tags: CRIME LAW SOCIETY) ATTENTION EDITORS: PICTURE 4 OF 29 FOR PACKAGE 'INSIDE SIBERIA'S PRISONS' SEARCH 'ILYA PRISON' FOR ALL IMAGES

Life in a Siberian prison

A look inside a high-security prison camp outside Krasnoyarsk, Russia

Back to Previous Gallery

Discussion Policy | FAQ | About Discussions

Comments

Add your comment

Read what others are saying About Badges

SuperFan Badge

SuperFan badge holders consistently post smart, timely comments about Washington area sports and teams.

More about badges | Request a badge

Culture Connoisseur Badge

Culture Connoisseurs consistently offer thought-provoking, timely comments on the arts, lifestyle and entertainment.

More about badges | Request a badge

Fact Checker Badge

Fact Checkers contribute questions, information and facts to The Fact Checker.

More about badges | Request a badge

Washingtologist Badge

Washingtologists consistently post thought-provoking, timely comments on events, communities, and trends in the Washington area.

More about badges | Request a badge

Post Writer Badge

This commenter is a Washington Post editor, reporter or producer.

Post Forum Badge

Post Forum members consistently offer thought-provoking, timely comments on politics, national and international affairs.

More about badges | Request a badge

Weather Watcher Badge

Weather Watchers consistently offer thought-provoking, timely comments on climates and forecasts.

More about badges | Request a badge

World Watcher Badge

World Watchers consistently offer thought-provoking, timely comments on international affairs.

More about badges | Request a badge

Post Contributor Badge

This commenter is a Washington Post contributor. Post contributors aren’t staff, but may write articles or columns. In some cases, contributors are sources or experts quoted in a story.

More about badges | Request a badge

Post Recommended

Washington Post reporters or editors recommend this comment or reader post.

You must be logged in to report a comment.

Comments our editors find particularly useful or relevant are displayed in Top Comments, as are comments by users with these badges: . Replies to those posts appear here, as well as posts by staff writers.

All comments are posted in the All Comments tab.

More about badges

Get a badge

To pause and restart automatic updates, click "Live" or "Paused". If paused, you'll be notified of the number of additional comments that have come in.