Boston Herald columnist Lauren Beckham Falcone on HBO’s documentary about a young married couple with Down syndrome:

“Monica & David” is more than a love story; it is a reverential, nuanced movie that shows that people with developmental disabilities want the same things everyone wants out of life: Love. Work. Companionship. Independence. These things aren’t the exception. They’re the expectation.

“Monica & David” airs today on HBO.

Other coverage of the movie’s HBO premiere:

Matthew Gilbert in the Boston Globe:

Reader, I cried … Monica & David” gracefully presents the world of people with Down syndrome at a crossroads, as embodied by these two individuals and their sweet, life-affirming love.

Ellen Gray in the Philadelphia Inquirer:

If you make it through the first 10 minutes dry-eyed, you’ll want to see an ophthalmologist.

ABC News: HBO film asks provocative questions about sex, children

Do parents of kids with disabilities deserve admiration? Pity? Are they courageous? Self-important? Preachy? The public debate on these weighty topics has been raging for the past month over at the New York Times’ Motherlode blog site, and shows no signs of letting up.

It all started when Amy Julia Becker wrote a guest blog about her decision not to undergo prenatal screening or testing for Down syndrome during her third pregnancy. Becker and her husband, who have a 4-year-old daughter with Down syndrome, concluded that they didn’t need the testing because they had no intention of terminating a pregnancy if they found a nonstandard number of chromosomes.

The post triggered a host of reader comments that reflected society’s ambivalence toward people with disabilities. While many of the comments were supportive of Becker’s decision, some were critical and many focused on the perception that a person with a disability poses an unwanted “burden” on the family and the society at large.

Becker followed her initial NYT post with a second one, Is it harder to have a child with Down syndrome? In that post, which also drew a wave of emotional comments, Becker noted that her biggest stress comes not from her daughter’s disability but rather from the ignorant and negative judgments society makes about people who wear the distinctive signs of Down syndrome on their faces. An excerpt:

I have the privilege of being the mother of a child with Down syndrome and, through her, being introduced to a world of people who have taught me more about what it means to be human than my education and productive life skills ever could. Harder times may come, but I cannot imagine a day when I would regret her presence in my life or in our community.

And now for today’s installment on Motherlode: Guest blogger Stacie Lewis, whose 18-month-old daughter May has severe brain damage, says she shouldn’t be considered a hero just because her child has a disability. (Needless to say, emotional comments have begun to flow.) An excerpt from Lewis’ post:

I wonder why people are comfortable with the idea of disabled people and their parents as heroes. I fear it comes from the same place as that other disturbing sentiment, pity.

To this, I add a final thought.

It will come as a shock to some.

I am happy. My life is fulfilling. I worry sometimes, but I also find love and pleasure in my life every day. And, much of that is because of May, not despite her.

There are many people in the world who are alone and unhappy. Pity them.

Readers, what’s your take?

For couple with Down syndrome, does love conquer all?

Newsweek calls this Tribeca-award-winning documentary “a triumph” and “a refreshing and rare story for television.” It’s a chronicle of the courtship, marriage, and happily-ever-after of Monica and David, two young people who have Down syndrome.

The Washington Post calls it “a moving affair, a film that can inspire tears of joy within the first five minutes.”

At a time when characters with disabilities are almost unseen on TV, filmmaker Ali Codina provides an intimate portrait of these two as they struggle to balance their desires for independence with their need to rely on others for assistance. The pair live with family, and have not been able to find work.

Codina tells the Miami Herald that she hopes the film will help build public awareness and acceptance of people with disabilities .

“That was always my goal throughout the making of the film: To get it to the largest audience possible who may know very little about disabilities,” Codina says. “Once the viewer connects with the love story, you can start dealing with broader issues, such as addressing the fact that we don’t often acknowledge adults with disabilities as adults. We treat them as children. I also hope people who see Monica & David start to think differently about employment for the disabled. It’s a pretty tough reality in terms of what’s available for them.”

… “Monica & David is one of the greatest love stories of all time,” says Anthony K. Shriver, founder and chairman of Best Buddies. “I am also hopeful that it will be a wake-up call for all of us about the endless love, passion and ability that all individuals with intellectual disabilities possess.”

More coverage in the Denver Post. The movie’s home page is here.

Earlier post here.

From the New York Times:

School districts across the country are struggling to meet the needs of students who were once predominately isolated in institutions. Among the hard questions districts face:

• How can schools balance instruction in functional skills and academics for students with severe disabilities, even as they are providing custodial care?
• Is inclusion really helping these students?
• How can schools measure progress reliably for these students?

The Times highlights the story of Donovan Forde, 20, who has cognitive disabilities brought on by a traumatic brain injury that occurred when he was hit by a car as an infant. After 15 years in the New York City school system, his mother says, Forde is more social but has made almost no other progress. He is not able to walk, speak or feed himself, and has not achieved most of the goals set out in his education plan. When not in school, Forde lives in a nursing facility on Roosevelt Island and receives services that are paid by Medicaid.

An excerpt:

Because they need intensive interventions, students like Donovan do not fit neatly into the paradigm for special education that has prevailed in the United States for more than a decade: inclusion. Congress ranks each state for its success in moving special education children into general education classrooms, addressing a core concern in the field – that too many children are not getting access to the regular curriculum.

But whether Donovan is best served in an academic-focused classroom is an uncomfortable question for many educators, because few better options are available, and inclusion “indicates a level of hope for parents, and the absence of hope is deadly,” said David Rose, the founder of CAST, a national organization that works to expand learning opportunities for students with disabilities.

“It’s an awkward period,” Mr. Rose said, in talking about the education of children with the most severe cognitive disabilities. “Because we know what we are doing is not right, and we often don’t talk about things when we don’t know what we are doing about them yet.”

Gwynneth VanLaven, writing in the Washington Post, says her visible disability makes her a target for strangers who offer well-meaning but unwanted advice in a futile attempt to “fix” her. To them, she says, she represents their worst fears: “I am vulnerability incarnate.”

VanLaven, who was hurt when she was hit by a car in 2007, says she really wants people to listen to her and bear witness to her experience — not offer miracle cures or accounts of other car crashes. An excerpt:

People are trying to relate, but they are relating out of fear. I think this is why the community’s love can sometimes feel suffocating. While well intentioned, the intervention of friends and strangers can sometimes feel like it has more to do with them than with me. I sometimes feel ignored when someone approaches me about my disability. Aren’t I more than a wounded lady? It feels like I’m wearing a scarlet D for “disabled-too-soon” and nobody can see past the fears it strikes in them.

… Active listening requires putting aside the anxieties of feeling vulnerable. When you see me rolling by on my scooter or hobbling along with my cane, the most difficult response may be to stay quiet. This means sitting with the feeling that the healthy can be suddenly struck down, that this fate could be yours or your daughter’s.

From the BBC, Washington Post, Miami Herald:

Monica & David, a documentary about the romance and marriage of two young adults with Down syndrome, has won the top documentary prize at the prestigious Tribeca Film Festival.

The film was directed by the female subject’s cousin, Miami’s Alexandra Codina, and was chosen from among 30 documentaries to receive a $25,000 prize.  It is scheduled to premiere on HBO in October.

From the jury’s statement:

“Monica & David takes an incredibly intimate situation and beautifully translates it in a way that makes you think about your own life. It’s a clear and observant look at a family and the purity of love, fueled by an organic sense of the sadness, joy and everyday humor that fill this epic journey that is life.”

An excerpt from the festival’s program notes:

… an intimate, year-in-the-life portrait of two childlike spirits with adult desires as they prepare for their fairy tale wedding and face the realities of married life afterward. Taking immense pride in their new roles as husband and wife, David wants to bring home the bacon, and Monica wants to fry it in the pan. They want babies of their own. But their unique circumstances still have them living with Monica’s mother and husband. How will this unique family face its challenges and move forward?

… along with their story is one of two different mothers who sacrificed and struggled against an intolerant world to provide for their children.

The official trailer is here.

Writing in  the New York Times Motherlode blog, Meera Oliva says she was devastated when she learned prenatally that the child she was carrying had a cleft lip, but her concerns disappeared as soon as her son, Elan, was born. Now that Elan is six months old and about to undergo his third surgery, Oliva says she and her husband feel their journey “has enriched our lives much more than it has taken anything away.” An excerpt:

… From the moment we saw Elan, we were absolutely in love with him, and with his cleft in particular, and suddenly all of the things to come like surgeries and arm restraints and special feeding bottles seemed much more manageable.

… I think the most shocking thing of all to both of us is how bittersweet it feels to have Elan’s lip fixed. To us, his face doesn’t need any fixing. His smile is so sweet and part of what makes it so cute is its imperfection. His cleft feels like a part of who he is, and yet if Dr. Mulliken does his job right, Elan will grow up and never feel like his cleft defines him, and I guess that’s the way it should be.

But its hard to imagine that now. Because for now we feel a little sad to be saying goodbye to this wide smile that we have loved so much these last six months. So we will make sure to enjoy it as much as we can the next few days, and then we’ll get to work on loving his new smile just as much. I’m guessing that won’t be too hard.