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Talking openly about love, sexuality

Date: 2006-10-30

It was Valentine's Day, Karen Lincoln recalled fondly, and boyfriend Mark Quirk brought flowers when he picked her up for the dance. They were dressed up, and the lights in the ballroom were beautiful, and suddenly he got down on one knee, and gave her an emerald ring that shone. She smiled and said yes, and they slow-danced to the theme song from "Titanic."

Lincoln was taking part in a round-table discussion about dating and relationships, and it was her turn to talk about her love life.

She described her five-year relationship with Quirk with a shy but firm pride. They probably can't live on their own, she explained, so they don't have wedding plans. But just being together is enough, she said. Her relationship with Quirk not only makes her feel special, it makes her feel normal.

"We get along great, and I think about him a lot when we're not together," said Lincoln, a 35-year-old with developmental disabilities. "He likes wrestling, McDonald's, and me. I like basketball, ballet, and him."

The conversation reflects an emerging movement in dealing openly with the needs of developmentally disabled adults for companionship and romantic relationships, directly confronting a delicate issue often sidestepped or ignored.

Moderating the workshop was Ellen Erdwein , a nurse for Toward Independent Living and Learning, or TILL, a Dedham human services agency that runs Lincoln's group home and Quirk's. As a specialist in sexuality education for the developmentally disabled, Erdwein gives residents advice on courting, dating, and safe sexual activity.

"Many agencies just see lawsuits " in promoting dating among adults with disabilities, said Dafna Krouk-Gordon , TILL president. "But life is lonely unless you are connected to other people."

For years, the fears about unwanted sexual advances, pregnancy, and emotional and legal concerns, and a perception that the developmentally disabled have less sexual desire than other people, impeded discussion of the issue. Group homes, typically at the urging of the fiercely protective parents, have traditionally sought to make sure couples are not left unsupervised.

"Parents often see them as perpetual children," Erdwein said. "It's sometimes hard to convince them that they have needs like everyone else."

Lincoln tells Erdwein after the round-table discussion that her parents "see her as a little girl" who isn't ready for marriage. Erdwein asks Lincoln how she and Quirk are getting along, and Lincoln quickly replies that they are very much in love, calling him her "honey."

Erdwein gently turns the topic to sexual activity, and Lincoln, who seems a bit embarrassed, acknowledges they often kiss. Erdwein asks if they ever progress beyond kissing, and she says no, adding that Quirk is "always a gentleman." She has dated other men, she told Erdwein, who were too aggressive.

"One tried to push sex on me," she said. "But I made him stop. I left him. I moved on. Mark wouldn't do that."

Lincoln's assertive self-awareness about sexual activity is a central goal of the TILL workshops, which instills concepts such as "I am the boss of my body," "No one can touch my body without my permission," and "Every time a male and female have sex they can make a baby."

While careful to outline the risks of sexual activity, TILL officials say they allow physical relationships between residents if both adults are deemed to understand the consequences and can give informed consent. They also consult closely with residents' parents to prepare them for the prospect of their child entering an intimate relationship. And TILL offers a range of social functions to give residents opportunities to meet, even arranging transportation.

For Lincoln, the idea of sex seems scary -- "That's not comfortable to me," she says -- although their kisses "are good," and that she trusts her fianc e. She adds, "Mark said it's OK to take it slow."

Lisa Maurer , author of "Positive Approaches: A Sexuality Guide for Teaching Developmentally Disabled Persons," said society has traditionally viewed developmentally disabled adults either as chaste, child-like figures, or as oversexed, less able to control their urges. A thicket of legal issues surrounding informed consent has also heightened the reluctance of agencies to promote romantic relationships, she said.

But, said Maurer, "The approach has changed, because we realized that sweeping it under the rug doesn't work. . . . Everyone's first reaction used to be 'uh-oh,' but there's been definite progress in addressing it and equipping them with the necessary knowledge."

On a recent weeknight, Lincoln and Quirk went on a double date with Nancy McGunnigal , 36, and Behai Webster , 25. McGunnigal lives with Lincoln in Stoughton, while the men live together in a group home in Easton.

Two TILL staff members accompany them to a local pizza restaurant, and watched from the next table as the couples caught up over dinner.

The men brought carnations, which instantly won their dates' favor. The women didn't bring anything, at least nothing tangible. "Just love," Lincoln said.

Over dinner, Lincoln teased Quirk for having a crush on her when they first met, which Quirk freely admitted.

Quirk, though far less outgoing and affectionate than Lincoln, said he was "very happy" with their relationship, and that they have grown close over time.

"She's pretty, and she's nice, and she listens to me," Quirk said. "She's mine." But later, when Lincoln calls him "honey bunch," he protests, saying, "It's getting too mushy, smoochy, too."

Across the table, there was a similar dynamic. Webster, a quiet type, held McGunnigal's hand under the table, but he deferred questions about their relationship to her.

"Nancy, will you tell him, please?" he implored.

McGunnigal was happy to oblige. "Every time, every time I see his smiling face, I get, I get . . ." she said, pausing to collect her thoughts. "I think he is the sunshine of my life. He is so handsome to me."

They pecked each other on the cheek throughout dinner, and later, in a more private moment, shared a longer kiss.

Paula Aiesi , a residential recreation coordinator for TILL and the couples' chaperone on this evening, said it had been heartwarming seeing their affection deepen.

"They love to dote on each other," she said. They seem to cherish each other without condition, perhaps because that kind of connection has been hard for them to find, she said.

"It's the emotional intimacy that's most important."

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