Adding Color and Spice; Befriending Those With Down Syndrome

Italy celebrates a National Down Syndrome day during the first half of October (as opposed to the International Awareness day on March 21), and these occasions always seems like a good moment to check and see how this woefully endangered species of people with Trisomy 21 are faring.

On the surface, much seems unaltered -- same old intolerance toward “different” people, pronounced by a society where sameness, whether among genders or through the offices of plastic surgery, is the new ideal. Parents are “burdened," children are “cursed," yadda, yadda, but as the mother of a 10-year-old boy with Down Syndrome, this ignorant mantra has grown dull. People with Trisomy 21 add color and spice to life, through their special ability to evoke creative ways to love and new perceptions of human achievement.

Over the last few months however, there have been some interesting developments. On June 19, Pope Francis made everyone at the Wednesday audience wish for Trisomy 21, when he invited 17-year-old Alberto di Tullio to climb onto the Popemobile and spin in his own chair. The sincere affection of Pope Francis showed the world, more than any article or statistic, how easy it is to love those who appear different -- I don’t think there are many in the world who would say no to a joyride in the papal car.

Then, a few weeks later, the birth of the first child of the Prince and Princess of Wales again drew the spotlight to people with Trisomy 21. In keeping with the relaxed royal style of the couple, they asked for no gifts to be sent to newborn Prince George, but made a special exception for a painting by Tazia Fawly, a 43-year-old British painter with Down Syndrome. The painting had been offered to the couple by the organization Heart and Sold, which supports artists with Trisomy 21. Indeed Fawly is only one of 20 artists represented.

It appears that art comes naturally to these very sensitive people. Last month a former student drew my attention to an art exhibition in Rome at the Galleria Arte Maggiore comprised of works by people with varying disabilities. The exhibit displayed 14 portraits inviting viewers to look at and relate to people that perhaps on a day-to-day basis they would be inclined to ignore.

The artists come from all over Europe: Estonia, Italy, Austria, France and the Netherlands -- areas known for the most aggressive push to abort children identified with genetic disabilities -- and yet these faces, creatively, colorfully, intensely or sketchily rendered, speak of thoughts, feelings and perceptions trying to get out and be shared.

Many other countries are looking to tap the creative reserves of people with Trisomy 21. The Mexican School of Down Art has been teaching young people to express themselves through art especially when speech is too difficult. 

The works of artists with Down Syndrome tend to be bright, limpid and cheerful. Crisp outlines frame vivid colors. My favorites, including the one given by Tazia Fawly, have a vague resemblance to the coveted art of the Australian aborigines. These Dreamings, as they are called, are darlings of the art market and have taken museums by storm. 

The many works by developmentally disabled artists open our eyes to hidden talents, but also open the mind and heart to appreciate how little we understand these extraordinary people. History has shown that the world forgives a great artist everything from philandering to madness to murder, but with a 90% abortion rate for Down Syndrome, most of these budding artists don’t even get a chance to get out of the womb.

That art, beauty and Down Syndrome would go hand in hand was not lost in the Renaissance. A painting by an anonymous Flemish artist from the 16th century shows the first recorded image of a person with Down Syndrome, portrayed as nothing less than an angel at the feet of the Christ Child.

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A friend indeed

September 28, people the world over will celebrate Eunice Kennedy Shiver day, in honor of the woman who was the driving force behind the Special Olympics. While the athletes organize races and events, another one of her legacies will honor her by coming together in friendship.

Eunice’s son Anthony Shriver founded Best Buddies International in 1989, which promotes one-on-one friendships with people with developmental disabilities as well as helping create accepting and fruitful environments for these people. Over the years, it has grown exponentially and is now present in 50 countries around the world.

Best Buddies works to make the world a warm and welcoming environment for people with developmental disabilities, starting with the language that one uses when referring to them. They advocate talking about people with Down Syndrome rather than Down Syndrome people, and try to eradicate words like “mongoloid” or “retarded” from the lexicon of the disabled.

They have many supporters in surprising places: artist Keith Haring designed their logo, actress Cheryl Hines helps fundraise and Austin Ruse – who by day defends the sanctity of life from daily assault at the United Nations, on the weekends cycles to raise money for Best Buddies. On October 19 he will participate in the Audi challenge cycling 100 kilometers (62 miles) around Washington DC. 

The most convincing testimony I have ever encountered for Best Buddies wasn’t a celebrity or a cyclist, but a student. A few years back in my High Renaissance seminar, I had a veritable thicket of football players planning on taking what they thought were “free tours” around Rome. Two eight-hour days of museum visits and a pop quiz later, all had dropped the class except one, Jason Bertocchi. He got himself a new pair of sneakers and said, “Professor Lev, I am going to keep up.” And he did, befriending along the way the best student of the group, who is now a seminarian at the North American College.

This odd couple taught me to never make assumptions about people, Jason in particular. Already at 19, Jason had become involved with Best Buddies and of course was very interested in my son. As I got to know him, a remarkable portrait began to appear under the rough surface. Scouted out as a young man, Jason was on his way to Duquesne to play football when a car accident changed everything he thought he was going to be. A fracture forced him to start college with a jaw wired shut and a mass of broken bones. Recounting the story, he set the stage, “No sports, not even the capability to speak -- this is how I started freshman year trying to make new friends.” 

One of Jason’s childhood friends has Down Syndrome. Jason explains, “I’ve known Chris since I was 8 or 9. He was always part of everything my other friends and I did.” Chris is a Special Olympics athlete who was winning swimming medals while Jason was garnering his football trophies.

The experience of being unable to express himself verbally and looked at oddly by his fellow students awakened Jason to the understanding of how lonely many people with Down Syndrome must be. Thus he got involved with Best Buddies. He and his friend Chris became an example and witness of barrier-free friendship. The competitive Jason peeks out when he says, "Bring me any doubters, and Chris and I will have them convinced by the end of the day.”

When I met him four years ago, I was fascinated by this 6'3" 250-lb burly guy crusading for the rights of the developmentally disabled. Given a few of my comments regarding athletes and business students in my art history classes, I appear to have been the slow one here. Jason has worked in every branch of Best Buddies from fundraising to awareness to grant writing to media work. He put his sports background to work when he organized the red/blue varsity vs disabled games at Duquesne, and his business degree to work when reorganizing his chapter.

But his remarkable quality is his gentleness. Trained as therapeutic support staff, he has worked in at-risk environments and has been called upon to subdue violent outbreaks of people with autism, yet he exudes a peaceful joy, the same joy he had when I first met this young man shortly after his hopes and dreams had been dashed and his bones barely mended.

With characteristic humility, Jason explained the secret of his peacefulness. “It’s very humbling to be loved and accepted as I am. No one at Best Buddies cares about what I wear, what I look like or what I have.” His greatest gratification, besides the friendships themselves, is the joy of the parents of the buddies. “Seeing their children loved and accepted makes them see themselves, their children and the world in a whole new way.”

That joy and hope that Pope Francis elicits when he reaches out to those who feel marginalized and sits them in his chair and makes them feel seen and loved, is reflected by all the Jasons, Austins, Anthonys and others who show the world what friendship is all about.

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Elizabeth Lev teaches Christian art and architecture at Duquesne University’s Italian campus and University of St. Thomas’ Catholic Studies program. A new paperback version of her 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 last Fall.  She can be reached at lizlev@fastwebnet.it.