It's a perfect morning for a wedding in tiny Dolgeville, N.Y. A soft breeze tames the July sun; birds do tremolos from above the clapboard cottages of a village so quaint it holds an annual Violet Festival. Beneath the narrow spire and wooden beams of the United Lutheran Presbyterian Parish, Carolyn Bergeron, 29, and Sujeet Desai, 25, are about to take their vows. "There is news today," says the Rev. James Paulson. "Love," he says, can't be stopped by cultural differences or different faiths. "Love can't be stopped by Down syndrome."
Carrie and Suj, as they're known, beam through much of the ceremony--their second, having already celebrated a Hindu ritual the week before--but the rest of the 140 people present, Pastor Paulson included, are fighting back tears. In the congregation, wearing expressions of awe and envy, are half a dozen friends from the National Down Syndrome Congress, which holds an annual meeting for adults with DS. Bergeron and Desai met at one of those sessions two years ago. ("I told my mom I wanted to date her," Desai recalls. "I was shy. I couldn't say anything, so Mom helped.") Both bride and groom are high achievers, advocates and role models within the DS community. She has given many inspirational speeches (often comparing herself to an oddly shaped tomato in her dad's garden--"different but just as juicy"). He performs on the piano, the clarinet and four other instruments. Both have led workshops in which they demonstrate black-belt mastery of martial arts (hers in karate, his in Taekwondo).
This generation of young adults with DS has shattered old ideas about what is possible for people who carry an extra 21st chromosome in their cells--the cause of DS--and what opportunities society owes them. They came of age in an era of early-intervention programs to spur physical and mental development--Desai began one at 7 weeks. Once in school, they were included in regular classrooms when possible and were offered tutoring and special classes when needed. Both bride and groom are high school graduates. Just as critical, this generation has benefited from medical care addressing the heart and gastrointestinal defects, eye problems, thyroid issues, obesity and other health woes that, for reasons that are poorly understood, often tag along with mental retardation as part of Down syndrome. The result: their average expected life span has doubled, from 25 in 1983 to 56 today. And as adults, they have had the Americans with Disabilities Act ensuring them a right to be accommodated in the workplace where possible.
While inclusion is the watchword for today's disabled Americans, social isolation remains a painful problem. "Once they leave high school, they can fall off the earth because of a lack of services," says Dennis McGuire, director of psychosocial services at the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, Ill. "If they're stuck at home, they can end up feeling very much alone."