The day Joyce Tucker found out her son would have Down Syndrome is still fresh in her memory, 30 years later.
“We had three daughters, and my husband, John, said, ‘Let’s try one more time for that boy,’ ” Joyce says. So three months into her pregnancy, she underwent an amniocentesis—which at the time was more common than ultrasound to determine the sex of a child.
A week later, the results came back.
“The doctor said, ‘You’ll have a boy, but he’ll have Down Syndrome,” Joyce recalls. “He’ll have deficiencies; he’ll be ill all the time; he’ll have so many problems it’ll be impossible for you to take care of him. My advice is for you to abort.’
“My husband and I looked at each other, and I said to the doctor, ‘You want me to get rid of my child? How dare you!’ She said, ‘I’m just giving you an option. Your child will never be an asset to society. He’ll never be a productive person. It’ll be painless and be over in a few minutes. We just need your consent.’
“We said, ‘There is no way we would ever abort our child. God has given us this child, and He would not give us anything we can’t handle.’ ”
So far, the decision the Tuckers made is the exception to the norm: Studies show between 60 and 90 percent of parents whose children receive a prenatal diagnoses of Down Syndrome choose abortion.
But the perceptions that drive those decisions are changing. And John Tucker, Jr., is a big part of the reason why.
John is a cast member on Born This Way, a remarkable, pioneering reality series airing on the A&E Network. Following the lives of seven young adults with Down Syndrome—John, Elena, Megan, Steven, Sean, Rachel and Cristina—Born This Way has been a hit with audiences and critics alike. Last September, it won the Emmy Award for Outstanding Unstructured Reality Series, and a week later, A&E announced it had been renewed for a third season, set to air later this year.
And as the show increasingly draws attention to these young adults and their families—their loves and friendships, their joys and sorrows, their struggles and achievements, their ability to defy stereotypes and to fulfill their potential—it’s changing viewers’ attitudes toward people with Down Syndrome.
“It’s giving a look into the lives of people society often dismisses,” says Janet Stafford, Focus on the Family’s project administrator for Sanctity of Human Life. “Viewers can see the respect and the love they have for each other and for their families and friends, their abilities and what they can contribute to the world.”
Stafford knows about that subject firsthand. She’s a board member at the Colorado Springs Down Syndrome Association and the mother of nine-year-old Kirsten, who has the condition.
“The show is just incredibly life-affirming,” she says. “It’s changing lives and softening hearts of people who may not have been aware. I’d assume it’s saving some lives from being added to the abortion statistics.”
An Honest Portrait
Sandra McElwee could write a book about raising a child with Down Syndrome. In fact, she’s written three of them.
Sandra, mother of Sean, is the author of Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion; Who’s the Slow Learner? Adventures in Independence and a children’s book, My Name is Sean and I Have Something to Share. She’s a veteran advocate for preborn babies with Down Syndrome, and she created one of the first Web sites for parents who receive a prenatal diagnosis of the condition.
But none of it prepared her to find Sean—along with herself and her husband, Rick—joining the cast of a TV series. And based on Sean’s first audition for Born This Way, she didn’t think there’d be a second.
“The girls who were doing the casting were two cute girls in their 20s, and Sean was flirting with them immediately,” Sandra says. “They were looking for a couple to be on the show and asked Sean if he had a girlfriend. Well, Sean thought they were flirting with him and said, ‘No. Do you have a boyfriend?’
“I immediately thought, ‘Oh no, we blew that one,’ ” she says, laughing. “When they called back for a second audition, I was really surprised. But Sean had exactly what they were looking for.”
And the series had exactly what Sandra was looking for—an unprecedented platform to show the world an honest portrait of people with Down Syndrome.
“The most powerful medium is television,” she says. “When you have a TV show every week, people can see with their own eyes. They can see the good, the bad and the ugly. The show doesn’t hold anything back, and I’m glad. If it was all rainbows and unicorns, people wouldn’t believe it.
“One of the most annoying stereotypes to me is, ‘They’re such loving, happy children,’ as if they’re not intelligent enough to ever get angry,” she adds. “People even say that about a 23-year-old. My 23-year-old is an adult, not a child, and trust me, he has the full range of emotions any of us do.
“I’m so proud of him. He’s so kind. People bring their kids over to him, want to take pictures, and sometimes they’re shy. He’ll put his arm around them. He volunteers in Sunday school class, and when little kids come in—maybe for the first time, when they’re nervous and don’t know what to expect—Sean just embraces them and shows them God’s love.”
Sandra is thrilled to be part of a show that dispels the myths and fears surrounding Down Syndrome—especially expectant parents facing it in their own families.
“On the first episode, my voiceover says I want someone with a prenatal diagnosis to see that their child can grow up, have friends, get married, get a job, have a place in this world,” she says. “That’s my whole purpose in doing this show. If you can see with your own two eyes what the future can hold, that’s a hope no one can take away from you.”
Setting Minds at Ease
The reaction Sandra hoped for is just the reaction others in the Down Syndrome community are seeing in the show’s ripple effects. Like Jennifer Jacob, vice president of the Down Syndrome Diagnosis Network, an online support group which provides information and resources for parents whose children have the condition.
“We hear about Born This Way all the time from our moms,” Jacob says. “It has just been amazing for people to see what Down Syndrome really looks like in this day and age. We didn’t know how much life expectancy has changed, what life looks like after school, what life could possibly be like for our kids when they grow up.
“I think moms fall into two categories when they see the show. Some are ready to jump in and want to know everything about what life for their child could potentially look like down the road. Others just aren’t ready for that yet: They’re processing day-to-day and can’t skip ahead. But the show’s definitely making an impact.”
Tanna Pirtle can tell you about that. Last year, nine weeks into her pregnancy, she and her husband, Clay, got a prenatal diagnosis of Down Syndrome for their daughter, Jemma.
“At first I was very upset—about having a child with a disability, about the effect on our other children,” she says. “We hadn’t been around Down Syndrome kids or adults, and didn’t know how they functioned.”
Then they saw Born This Way.
“Watching the show, we learned,” Tanna says. “It allowed me to see they have a normal life. It might take them a few extra steps, but they can do it. Even though I was still upset, I knew Jemma would be fine. Nothing’s stopping those kids, and nothing’s stopping her.”
Not that Tanna stopped fretting altogether. “I worried the whole time I was pregnant,” she says. “I’m a labor-delivery nurse, so I know way more than I should. But as soon as Clay gave Jemma to me, all that worry and stress went straight out the door. She was the most perfect thing God had given us.”
And Tanna found her fears about how it might affect their other children were unfounded—a discovery aided again, by Born This Way.
“We have 10-year-old, an 8-year-old and a 4-year-old,” she says. “We watched that show as a family, and we laughed and we cried at some parts. It helped our kids see we’re all normal people, just different in our own ways. When they look at Jemma, they don’t see her as someone with Down Syndrome. They see her as their little sister.”
Clay echoes that thought. “She’s brought so much to them,” he says. “She’s already changed all our lives as a 6-month-old baby. Not just our family, but everyone she comes into contact with. There’s so much love.”
‘That’s What God Made Us to Be’
That’s something you hear a lot from people who know someone with Down Syndrome: The impact they have on those around them.
“Because of John, our daughters all decided on careers helping parents,” says Joyce Tucker—careers like special-education teacher and sonogram technician. “It’s been a great blessing to have him in our life.”
Joyce has always made sure John’s blessings weren’t confined to the family. “I’d never keep him at home, secluded,” she says. “He has to be out there with everyone. At age 1, 2, 3, whatever age, he was at the grocery store, at the mall, at the movies with us, walking our dog. I’d never keep him hidden away.”
And now, she says, he’s blessing a lot more people—a goal John shared at his audition.
“They asked him what he wanted to do,” Joyce says, “and he said, ‘I want to rap on Hollywood Boulevard, on TV, in different states and countries. I want to rap all over and let everybody see that even though I’ve got Down Syndrome, I can do stuff. I’m here: God made me. I want to be out there to be an inspiration to other people.’ And sure enough, that’s what he’s doing.”
Citizen readers wary of reality shows in general may wonder if all this is too good to be true. And it should be said that Born This Way—whose producers previously created MTV’s The Real World and the Bruce Jenner-oriented show I Am Cait—does include some negative elements, including occasional raw language. (See Focus on the Family’s review at www.pluggedin.com/tv-reviews/born-this-way.)
But the show’s positive elements are numerous. “While the edges of Born This Way can be rough, the heart is strong,” says the Focus review. “Indeed, this may be the most pro-life show on the air.”
“The producers just want to tell good stories, and they’re letting us tell ours,” says Sandra McElwee. “I’m at a Down Syndrome conference right now and have quite a few people coming up to me saying, ‘I feel like I know you.’ And I say, ‘Oh, you do!’ That’s really us they’re seeing.”
Joyce agrees. “The producers are really wonderful to work with,” she says. “They’re understanding. They don’t try to force us to do anything we think is inappropriate.”
In fact, Joyce got to tell the story of John’s diagnosis—the doctor’s abortion suggestion and her emphatic refusal—in the series’ first episode. And in that same show, John tells his friends, “Your parents gave birth to you. They wanted you as their own child. They love you, they care for you and everything that you have now is very special. … ’cause that’s what God made us to be.”
Joyce couldn’t be prouder.
“We raised a wonderful son,” she says. “I should go back to that doctor if she’s still there and let her know, ‘This is who you wanted us to abort. Look at him now.’ ”