It has been called “one of the greatest love stories of all time.” MONICA & DAVID is a documentary exploring the union of two adults who fall madly in love, court, get married, and move in together – and who happen to both have Down syndrome. Marked by its humor, hope, romance, and tensions surrounding the need for family support amidst the desire for an independent life together, MONICA AND DAVID captures a couple capable of far more than what adults with Downs are given credit.
With marriage for those with Down syndrome the rare exception to the rule, the film begins the eve before Monica and David’s wedding, with the lovers cooing each other’s pet names - “Winnie the Pooh” and “little baby” – into the phone. It invites viewers to the wedding, with Monica’s sentiments taking on any lack of acceptance and mainstream rejection about the day ahead: “It’s all about him and all about me. This is my day. It’s my life, to be with my husband forever.”
The couple goes on to move in with Monica’s parents, with what it’s like to be a parent of one with an intellectual disability sharing center stage at points. Challenges faced by the newlyweds, like having their routines disrupted and David being diagnosed with diabetes, makes the matter of self-reliance all the harder for all involved. The film follows steps taken by the family to enable the couple to be independent with support.
Directed and produced by Monica’s cousin, Alexandra Codina, the film made its world premiere at the International Documentary Festival Amsterdam, where it won second place for the Audience Award. It went on to win the Best Documentary at last year’s Tribeca Film Festival. In interviews, Codina has described the wedding as “very powerful, very serious, and very adult” – a far cry from the perception others’ have held in it being just a “cute gesture between kids.” Her fly on the wall footage, screened at the 2010 Reykjavík Film Festival, highlights not only the need to change perceptions about the love lives of those with Down Syndrome on a societal level, but the need for their parents to let them become fulfilled in this way as well.
While approximately 200 people attended Monica and David’s wedding, protective parents of some of the couple’s friends, who also have intellectual disabilities, had prevented their adult children from attending, as not to fill their heads with ideas. This difficulty letting go is ironic given the tireless years these dedicated, loving parents have spent advocating for their children to live “normal” lives. Equally difficult is the ability for most people to see people with Down syndrome as sexual beings, longing for romance, companionship, and more.
While the film doesn’t deal with the couple’s sex life, the passion, desires, abilities, affection, companionship, and endless love captured hint at intimacies left to privacy. But its use as a vehicle for societal change needs to involve recognizing that this special population has the same sexual feelings and intimacy needs as the rest of us. Monica, now 38, and David, 32, remind us that people with Down syndrome often have interest in dating, marriage, and becoming parents. Their film, lauded for love without limitation, acts as a wake up call to what people like them want out of life, providing the perfect stepping stone to advocate for the sexuality education and sexual health services.
As with all other human beings, people with Down syndrome have the right to routine reproductive healthcare, emotionally satisfying sexual relationships, and culturally appropriate ways of expressing their sexuality. With 50 percent of women with Downs fertile, and a couple of documented, confirmed cases where males with Downs have fathered a child, it is important to teach them about reproductive health, contraception, sexually transmitted infections, and safer sex in understandable ways. Such developmentally appropriate information needs to take one’s cognitive level and learning style into consideration, and should be enhanced with information about interpersonal relationships, dating, self-esteem, sexual exploitation, avoiding sexual misunderstandings, sexual functioning, decision-making, cultural norms, peer pressure, different forms of sexual expression, sexual values, personal empowerment, sexual responsibility, communication skills, regular gynecological care… Basically, it needs to cover the same topics that should be addressed with everyone in an age-appropriate way. It is also important for healthcare providers and professionals to support parents by initiating structured talks about contraception that provide clear, judgment-free information that’s tailored to the patient’s intellectual abilities.
Thanks to societal changes and medical advances, people with Downs now realize a life expectancy of 60 (versus 25 in 1983), with some living into their seventies. Some are now even going on to college to polish up on social skills, like living in residence halls with non-disabled classmates, in an effort to become more independent and get better jobs. Empowering people with Downs to express their sexual feelings in ways that are socially acceptable and age appropriate needs to be acknowledged, supported and understood. MONICA AND DAVID is slated to be shown on TV stations worldwide.