You're pregnant, and the amount of alfafetoprotein in your blood has been measured. You're sitting in the doctor's office waiting your turn. Like everyone, you want a beautiful baby, a smart baby, one whose Halloween costumes, holiday dinners, little league games, and birthday parties you imagine with startling clarity. The baby's going to look like you. He's going to have your mother's eyes, your husband's hands. It's too early, but you've already bought little clothes, little shoes, little bibs. But the doctor has a funny look on his face. He clears his throat, rubs his neck, washes his hands. The odds are 800 to one, and you're the one. Your baby has Down syndrome.
"I'm sorry," the doctor says. He hands you a pamphlet, but you don't have to read it to know. Nothing will be as you imagined, not ever again.
The blood in your body feels heavy and thick.
If only you could wish yourself into another fate. The doctor looks happy. The test is negative. Your baby is fine. All dreams and anticipations can resume, and for you, Down syndrome will remain something you see at a distance, whenever you pass a small clump of adults holding garbage bags and rakes, cleaning pine needles from the front lawn of the public library.
Statistically, you can abort this baby without censure. Only 47 percent of women say they accept the idea of abortion in the right circumstances. But if a baby tests positive for a genetic disorder, that figure jumps to 78 percent. It jumps still more if the genetic disorder is Down syndrome. A 1996 study found that 88 percent of women who have a confirmed prenatal diagnosis that they are carrying a Down's fetus choose to abort.
But what information do they receive first? A 2002 study in the Journal of Special Education asked 69 women who knew they were at risk for carrying a fetus with a disability what they planned to do and what kind of genetic counseling they received. Sixty-five percent said they would choose to terminate a pregnancy that tested positive for Down's or spina bifida. But when the researchers asked the pregnant women if they had been encouraged to meet with a parent of a child with a disability, 91 percent said no. When asked if they had been given information about future quality-of-life issues for a child with a disability, 87 percent said no.
If you wanted, in San Diego, to see a form of your baby's future, if you wanted to see what kind of work your middle-aged Down syndrome child might do when he's 30 and you're 60, where would you go?
The North County center for the Arc of San Diego is a set of blue-and-white buildings on a little road called Ridge, not far from the Vista courthouse. Between 8:00 and 9:00 weekday mornings, vans and buses pull in and out, dropping off 69 adults who have cerebral palsy, autism, epilepsy, and/or some form of mental retardation, including Down syndrome. Some of the adults roll across the asphalt in wheelchairs, some grip walkers, some limp, some even stride, but they are always within reach of the abled.
Arc stands for Association for Retarded Citizens, a national, private, nonprofit organization founded in 1951. San Diego is home to six Arc facilities, which receive funds from the Department of Health and Human Services and pledge to provide "positive experiences for persons served, in a safe environment that allows some risk-taking with no preconceived limits on achievements." This is one of the paradoxes of Arc care. The organization that boldly sought rights for retarded citizens dropped the use of the word "retarded" from its name in 1991 because the word had become a pejorative, and although the developmentally disabled are, by the state's own definition, permanently restricted in their development, the Arc presumes those limits can't be foreseen. Each person, given the right care, may develop, and to that end, Arc clients are called "consumers" and care providers are called "job coaches."
Laura Orcutt, the director of the North County Arc, has worked with consumers for 37 years, and she is neither discouraged nor embittered. In fact, she sees nothing to be discouraged about, except possibly our failure, as a culture, to value human life enough.
"These people contribute just as much as I do, if not more," she says. "I believe that they have made me the person that I am. I appreciate every single day because of them. I can honestly say that I never feel depressed. They are amazing people. Some of them smile, and I think, 'What did they go through to get here?' I think that's what motivates those who stay in the business."
I enter the business as a volunteer on a Tuesday in April, and I attach myself to Helen, the only job coach who seems happy to see me. (The names of all job coaches and consumers have been changed.) The others say very little, perhaps foreseeing my imminent departure -- in mid-June, when my children get out of school for the summer. Perhaps Orcutt has told them I'm a journalist, and they hate reporters. Perhaps they see that I'm a dilettante, somebody who's interested in doing their work but has no knowledge or experience.
In December of 2004, the Wall Street Journal reported that there were 4.5 million developmentally disabled adults in the United States, and 90 percent of them lived in private homes, not institutions. This means that during the day they would likely need the services of a place like Arc. Of the 800,000 people employed as their direct caregivers, at least half annually quit those jobs.
For one thing, the pay is low. Starting pay in the nonprofit private sector was $8.68 in 2004. Between 1992 and 2000, wages for direct support workers like Helen increased 82 cents an hour, while the average increase for a fast-food worker was $2.11.
Helen has raised a family and seems to have come here, like Orcutt, out of compassion. She wears comfortable girlish clothes to work: a T-shirt with rolled sleeves, denim overalls, and tennis shoes. Sometimes she wears her long, curly blonde hair in a ponytail.