THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Friday, February 24, 1995 TAG: 9502240584
SECTION: FRONT PAGE: A1 EDITION: FINAL
SOURCE: BY MARIE JOYCE, STAFF WRITER
DATELINE: VIRGINIA BEACH LENGTH: Long : 119 lines
Joel Myers is talking about work.
``I love my job. I got friends to work with,'' he says. He is seated comfortably, one leg crossed over the other, on the living room couch of his townhouse.
The phone rings. Myers doesn't pick it up because he has guests, so the answering machine kicks in and a high voice trills through the room.
``Joel, it's your girlfriend. Pick up the phone. I love you. Bye. . . ''
Myers grins broadly and rolls his eyes toward the ceiling.
If you ask Myers, 33, what Down syndrome is, he says he doesn't know. Ask whether he has a handicap and he says no. Ask him what's different about his townhouse and the living arrangements of his adult cousins, and he says there is no difference.
Parents of Down syndrome children want our society to look at people like Myers, who has the condition, and think about a world without Down syndrome.
Earlier this week, the president of Norfolk's Jones Institute for Reproductive Medicine said the institute would begin testing a way to screen embryos for Down syndrome before implanting them in a woman's uterus. This would allow couples to select babies who are free of the genetic disorder.
The news upset Mary Wilt.
``We don't want to be raising the last generation (of people) with Down syndrome,'' Wilt said. ``Because they're wonderful.''
As a parent of Emily, a 4 1/2-year-old with Down, she is concerned by an implication that these children are somehow less worthwhile.
``That's one of the American tenets: That you (should be) a productive member of society, and if you're not, you're not valuable. There are things in society that are important that have nothing to do with money.''
As vice president of the Tidewater Down Syndrome Association, she says the organization is worried that prospective parents will be asked to make this choice without really understanding what Down syndrome is.
``They may be making a decision on bad information, on fear of `The Mongoloid' they might have heard of,'' said Wilt.
The president of the Jones Institute, Gary D. Hodgen, has said Jones is not making a value judgement on Down syndrome - just working to make it an option for parents. Many of the couples who come to the Jones Institute for help in having children are in their 30s and 40s, and older women are at a sharply higher risk of bearing Down syndrome children.
Once the Jones Institute can offer the test, Hodgen said, staffers will never pressure parents to take advantage of it. ``The couple makes the decision,'' he said.
Down syndrome happens because an extra chromosome is attached to the 21st pair of a person's 23 pairs. The extra chromosome causes mental retardation. Physical symptoms usually include certain facial characteristics and often defects in the heart and intestines.
Life expectancy for people with Down, dramatically improved as doctors have learned how to repair heart problems and other birth defects, is now about 55.
A person with Down may have severe retardation. But more often the retardation is mild, and many of the attendant health problems can be addressed with surgery and other treatments.
To some degree, the choice not to give birth to a child with Down already exists. Amniocentesis, a process in which a doctor removes and tests fluid surrounding the fetus during pregnancy, can detect the chromosomal problem. And until the 24th week, parents can legally seek an abortion. Genetic counselors say the majority of those who receive that verdict chose to end the pregnancy.
Myers pays his bills himself at the bank with money he earns at his job with Sugar Plum Bakery & Cafe in Virginia Beach. If the van that takes him to work is late, he calls work to tell them. If he needs to change his hours at work, he talks to his supervisor himself.
He's a sports nut, loves dancing and goes out frequently with his girlfriend. He and his buddy read the movie pages in the newspaper, pick out a show and walk to the theater at Pembroke Mall.
He's not good at remembering, for instance, how many years he's lived at the townhouse. But he knows what time he's supposed to be at work, he knows which nights it's his turn to take out the trash, and he never forgets a birthday.
It took a lot of hard work on the part of his mother, Sandi Myers, to help him become so independent.
From the time he was little, Sandi tried to keep his life as normal as possible. She taught him how to pay for things. She encouraged him to take on a paper route.
She's had to prepare him to confront adult issues like sex and drinking. She doesn't check up on him all the time, but she keeps in touch and pushes him to find his own solutions to problems.
She stifles her fears for him in the interests of his independence. He and a buddy like to walk to nearby Princess Anne High School to watch football and basketball games. They walk back by themselves, and Sandi holds her breath, waiting for his call that says he got home safely.
Mary Wilt hasn't had to confront those issues yet. She's more concerned with her child's education.
But Wilt has felt the stares of the people at the mall. Many people fear those with mental retardation, she says.
Jim Wheaton also knows about society's discomfort. His daughter, 20-month-old Annie, has Down syndrome.
One of Wheaton's concerns about the Jones process of selecting embryos is this: How will society feel about mentally retarded children when parents can choose not to conceive such a child?
``If we allow, unchallenged, the propagation of the idea that we can choose the perfect baby . . . we'll say, `Well, they didn't have to have that baby. Why should we provide the educational opportunities?' ''
It could be a step down a slippery slope, Wilt and Wheaton say, to a time when society values only ``perfect'' children.
``The society would be better off without children with leukemia,'' Wilt said. ``Society would be better off without - fill in the blank.''
She and Wheaton say they were shocked and scared when they learned their children had Down. But now they say they wouldn't trade the experiences they've had with those children for anything. Being a parent to a Down child, they say, has made their lives fuller.
``Emily's life is not a catastrophe to society or to me,'' said Wilt. ``I would no sooner give her up than my other children.'' ILLUSTRATION: GARY C. KNAPP
-Joel Myers
by CNB