Shriver helped bring Down syndrome out of society's shadows

When the baby arrived, the pediatrician wouldn't say anything to Naola Rubens. He just presented her with papers to sign the child over to an institution.

Rubens' daughter, Lori, had Down syndrome.

It was 1961. The most a parent could expect for such a child was a life of full-time hospital care. Rubens decided she would try for more.

"I said, 'She's my child,' " said Rubens, now 87 and living in Dunedin, "and from there we just raised her as one of three children."

Soon she got help from an unexpected source. In 1968, Eunice Kennedy Shriver created the Special Olympics, helping society see new possibilities for the lives of the mentally disabled.

Shriver, who died Tuesday at 88, is being remembered for giving opportunities to people who once lived in the dark shadows of society.

Lori Rubens was a Special Olympian, participating in bowling, tennis and track and field.

"She had a lot of advantages, I'll tell you," her mother said. "I just think she was born at the right time."

• • •

For 150 years, children with mental disabilities — referred to in the 1800s as imbeciles and idiots — were taken from their parents and sent to institutions.

In the 1950s and '60s, some parents began to reject this option.

"I've thought about this so often. Who were these families who made these decisions initially?" said Madeleine Will, vice president of public policy for the National Down Syndrome Society. "They were choosing not to institutionalize their children at a time when there was no support and even confronting rejection and hostility."

Among the pioneers were Bert and Jean Muller. In 1958, they had a mentally disabled daughter named Leslie. Muller, who owned an insurance agency, visited his doctor, his priest, his psychiatrist, even his lawyer seeking information on how to care for his daughter.

None had answers for him.

"Nothing was available for someone who wanted to help a mentally retarded child," said Muller, now 82. "So I sold my business. I could see I had a full-time job ahead of me."

Muller and his wife learned of a day program in Pinellas Park. About eight children were there the day Muller's daughter arrived.

Muller became one of its most vocal supporters, eventually heading the organization now known as PARC. The acronym stands for Pinellas Association for Retarded Children, but today the organization steers away from the use of the word "retarded."

"An awareness was just beginning," Muller said, "and the most important thing that happened was the election of John F. Kennedy to the presidency because he had a sister who was mentally retarded."

Complaints had surfaced of abuse and mistreatment in mental institutions. Kennedy assembled a committee of experts to come up with answers. And people began to realize that with education and training, children with mental disabilities could realize their potential.

Then in 1968, Shriver, Kennedy's sister, organized the first Special Olympics at Soldier Field in Chicago. At the opening ceremony, she delivered the athlete's oath: "Let me win. But if I cannot win, let me be brave in the attempt."

The event introduced another message to the world.

"This was a population that was not spoken about in our society," said Will, of the National Down Syndrome Society. "So the fact that there was a message about them and their capabilities in terms of athletics was very powerful. It conveyed the message that these individuals were more alike than different."

Soon, more money was set aside for programs to help the mentally disabled. Legal action forced school districts to provide educational opportunities. The mentally disabled moved into group homes, where their families could keep a closer eye.

Some got jobs. Others got married.

Rubens' daughter, Lori, is now 48 and lives in a house in Dunedin with two other mentally disabled women and an aide. Retired from her job at PARC, she spends her days going on day trips, walking, watching the news.

PARC now has a 12-acre campus with a spa, a travel agency, bank, senior center and jewelry store. It serves about 700 people a day.

Muller's daughter, Leslie, now 50, lives in apartments at PARC. She gets up every morning and goes to work there, putting together packages.

"Today she's happy, she smiles and she knows she's going to see us every Sunday," Muller said.

• • •

Society still has a long way to go, said Dr. Brian Skotko, a fellow in genetics at Children's Hospital Boston. Many families endure long waits for help from the government and community organizations; disabled people are still housed in institutions; popular movies still disparagingly use what Skotko called "the R word."

"Not all of the ghosts have left the banquet table," he said.

New medical technology is raising questions about the future. Soon, Skotko said, women in their first trimester of pregnancy will be able to learn through a blood test whether they are carrying a Down syndrome child.

Today, one in 733 babies is born with the condition, Skotko said. The new blood test will likely mean fewer Down syndrome babies will be carried to term. Skotko wondered, "Will babies with Down syndrome slowly disappear?"

The National Down Syndrome Society, of which Skotko is a board member, takes no position on what women should do if they learn they are carrying a Down syndrome child. Skotko said the organization is focused on making sure women get the facts because research shows the information they get is often inaccurate or offensive.

"We all owe it to Eunice Kennedy Shriver to continue to fight for the justice and acceptance that all people deserve whether or not you have a disability," he said.

Leonora LaPeter Anton can be reached at lapeter@sptimes.com or (727) 893-8640. Times staff writer Mike Wilson and researcher Carolyn Edds contributed to this report.

Shriver helped bring Down syndrome out of society's shadows 08/12/09 [Last modified: Tuesday, August 18, 2009 5:14pm]

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