Down Syndrome Adults, Living Longer, Marry

HBO film explore's couple's journey to independence with support from parents.

October 12, 2010, 3:51 PM

Oct. 13, 2010— -- When Monica and David were born in the 1970s, children with Down syndrome had a life expectancy of under 25. Many parents were told by well-meaning doctors that their children would never walk, talk or lead meaningful lives.

Their generation defied those predictions, and now this Miami couple, both in their 30s and expected to live well beyond their 60s, has shattered misconceptions about the lives of those who have intellectual disabilities.

Monica and David are married and share all its love and intimacies.

Their journey to independence with parental support is chronicled in "Monica & David," which won Best Documentary Feature at the 2010 Tribeca Film Festival, and premieres October 14 on HBO.

"It gives viewers an unprecedented chance to get to know people with Down syndrome better," said Nancy Abraham, senior vice president of HBO documentary films. "It's relatable and really eye-opening."

Because the couple addresses having children, the film also is "definitely a catalyst for discussion," she said.

The film is the first by director and producer Alexandra Codina, 32, whose universal love story grew out of her close relationship with her cousin Monica, 38.

In intimate footage and personal interviews, she explores the challenges the family faces, trying to give the couple independence but, at the same time, shield them from a world that might reject them.

More than 400,000 Americans are living with Down syndrome -- born with three, rather than two, copies of the 21st chromosome, according to the National Down Syndrome Society (NDSS).

Their cognitive abilities are varied -- some are profoundly incapacitated while others are very high-functioning -- but their need for love, affection and acceptance is as ordinary as all adults.

They have an increased risk for heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia and thyroid conditions. But because many of these conditions are now treatable, most now lead healthy lives.

And now, with more social acceptance, a small, but growing number of those adults are taking marriage vows.

"One of the biggest misconceptions is they are angelic, always happy," said Codina. "But loneliness is very typical and a difficult experience for a lot of adults with disabilities. Even if the mainstream environment is still fighting against the stigma, they have to work harder to live an ordinary life."

Monica and David live in a separate apartment under the close supervision of her mother, Maria Elena, and stepfather, Bob, who try to respect their privacy while helping to structure their daily lives.

But even those close to the couple struggle to view them as fully actualized adults.

"Monica and David's love and their desire for an adult life is very real," she said. "Like all issues relating to adults with intellectual disabilities -- dating, marriage, housing, employment, education, the future, and parents' roles -- there is no clear line. Monica and David are adults capable beyond traditional expectations, but they can also be childlike and need assistance."

Marriage Seen as 'Cute Gesture Between Kids'

At 16, Codina began working at a social program for adults with intellectual disabilities with her cousin Monica. Six years apart, they were close growing up.

After graduating from Bowdoin College in French and art history, and spending two years with film production companies in New York City, Codina returned to her Cuban-American roots, working for the Miami International Film Festival.

The idea for the film began just before the 2005 wedding.

"Everyone was very happy for Monica when she found David, but there seemed to be an unspoken feeling that this was a cute gesture between two kids rather than a serious adult commitment," said Codina.

"There was a complete understanding that they were very much in love, but the full transition to see them as adults hadn't happened yet," she said. "That motivated me to start the project, seeing Monica and David not just as adults with intellectual disabilities, but as people, individuals and as adults."

The film opens just as the two prepare for their lavish, storybook wedding.

"It's all about him, and all about me," says Monica. "This is my day. It's my life, to be with my husband forever."

While Monica, then 33, and David, then 27, are capable beyond expectations, their parents have trouble letting go.

"As parents, we want people to look upon our children with special needs like anyone else," says Maria Elena. "We want them to be treated with respect and with dignity and to not stare at them and whatever. And yet, because we want to protect them so much, we are typically the first ones who treat them poorly by subconsciously denying them their rights to have a normal life."

As daily life unfolds, Monica's mother manages the couple's lives, teaching them to cook and even walking in to the bedroom to wake them each morning. Their routine is disrupted by a move to a bigger home and David is diagnosed with diabetes.

At an emotionally-charged point in the film, Monica writes a letter to her biological father, upset over his absence in her life.

"Those who were close to her knew that of course she was fully aware of the fact that he had left," she said. "But they wondered what she truly felt. It was an incredible moment to hear her express what she might be feeling. And she tells us exactly."

Monica and David are physically demonstrative, but the director keeps their private life private.

"They are perfectly capable of having sex," said Codina. "And the desire is certainly there. But I don't feel it's my place to divulge their relationship, and they didn't want to share it with the world."

The couple talks about having children and their parents do not overtly forbid it.

In the past, sexuality was not considered an issue because of the inaccurate belief that what was then called mental retardation left people with Down syndrome in permanent childhood, according to the NDSS.

But today, doctors know that children with Down syndrome develop much the same way as their peers, and have all the same sexual feelings and needs for intimacy.

Experts recommend sex education -- learning about reproductive health, birth control and sexually transmitted diseases.-- as the the best way to plan for this aspect of adulthood.

Down Syndrome and Parenthood

Monica's mother addresses the issue of parenthood in the film: "Obviously people with developmental disabilities have needs and desires. They are very much like everyone else. And so I think parents need to be as aware of the contraception needs of a person with an intellectual disability as to the needs of their other children"

"Presumably they are having sex," said Tess Beck of New Haven, Conn., whose 31-year-old son has Down syndrome, who previewed the film.

Although their love is genuine, the consideration of children seems "irresponsible," she said.

"There is no reason to stop them from loving one another and marrying, as long as the fertility thing is figured out," she said.

Beck's son Christopher lives in a group home in Vermont and has a girlfriend, but she worries that marriage might be too much for the couple to handle. "It would have to be carefully thought out."

As for the film's couple, "It's lovely that they could get married and be happy together," said Beck. "But there is nothing normal about their life. Their parents are giving them all the good parts and none of the responsibility."

Few statistics exist on adults with Down syndrome -- even on important questions like their sexuality, according to Emily Perl Kingsley, a veteran writer for Sesame Street and an activist for those with disabilities.

Biologically, women can ovulate, though only about 50 percent are fertile. Information on men is less clear, mostly based on studies of boys in institutions in the 1930s that concluded they were sterile.

According to NDSS, there have been two documented cases where the paternity of a man with Down syndrome was confirmed.

Kingley's son Jason, now 36, exceeded all expectations, appearing at the age of 3 on the pioneering children's show. But when he was born in 1974, Kingsley's obstetrician urged her to institutionalize the baby.

"He told me that my child was going to be profoundly retarded and never walk, never talk and would never read or write and or be able to distinguish us from any other adult," she said. "He would never have any meaningful thought process...He told me to go home and tell my friends he died in childbirth."

Many children of that era lingered in institutions, dying of respiratory illnesses before they were 5, because they were never given antibiotics.

Others died of heart conditions before modern medical advances. An estimated 30 to 50 percent of children born with Down syndrome are born with heart anomalies, according to Kingsley.

"They were not considered worth treating," she said.

But a social worker suggested a new concept, "early intervention," and Kingsley decided to keep Jason at home.

There, he thrived, learning to read and appreciate classical music, as well as getting a high school diploma. With a co-author, he wrote "Count Us In: Growing Up With Down Syndrome."

Today, Jason is in good health and lives in a structured group home with two roommates who also have Down syndrome. Though he is "damn bright," according to Kingsley, he has "significant gaps" in knowing how to "manage in the world."

Too Much Stereotyping of Adults With Down Syndrome

While his dream to direct animated films is probably ambitious, Jason's work in a mail room is "well below his capabilities," she said.

"There's so much stereotyping," said Kingsley. "They are wiping down tables at McDonald's or bagging groceries at Shop Rite. Not too much else is offered."

After a sexually "complicated" relationship with a girlfriend, Jason had a vasectomy.

"I wish it for him to fall in love," said his mother. "I think we tend to infantilize [adults with Down syndrome] and think that they are not capable of real emotion. But that's not true."

When mother and son attended the Tribeca opening of "Monica & David," Jason enthusiastically told the couple, "I'm just like you," then continued, turning to Kingsley, "to me, this film is about, back off mom!"

As for Monica and David, who are now 38 and 32, they have embraced the film about their now-five-year marriage.

"[It] was a huge relief when I first showed them the cut," said Codina, the filmmaker. "They talk about wanting to be stars, feeling proud and being happy that people love their film. They are natural-born stars. But really, I think it's because they feel acknowledged and understood by the camera; and now by the audience."

The couple serves as volunteers in the Take Action program that accompanies the film online. The film will also be accessible to those who are blind and vision impaired as ACB Radio live streams the audio with full audio description of all visual elements.

Codina hopes that viewers and listeners will look beyond policy and language changes when it comes to understanding the adult world of people with disabilities.

"One of the things that's very challenging is getting people to connect on a human level with those with disabilities," said Codina.

"I see this as a love story that people will take on an emotional human level and get beyond the fact that they have Down syndrome," she said. "And with that raw human connection, begin to regard people with disabilities in their everyday lives and work places differently."

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