Tuesday, 11 October 2005 16:21

A Young Woman with Disabilities Plans Her Wedding

Written by Amy Dockser Marcus, The Wall Street Journal

In April, Carrie Bergeron addressed a crowd at a black-tie fund-raiser in Michigan, held by Band of Angels Foundation, a group that supports people and families living with Down syndrome.

In April, Carrie Bergeron addressed a crowd at a black-tie fund-raiser in Michigan, held by Band of Angels Foundation, a group that supports people and families living with Down syndrome.

Wearing a black dress with a teal jacket and a necklace in the shape of a butterfly, Ms. Bergeron, 29 years old, cited her accomplishments as a young adult with Down syndrome, a genetic condition that causes a range of physical and intellectual disabilities. She recounted her work at community college to earn a teaching-assistant certificate. She spoke about volunteering in a kindergarten class. She added that she was on her way to earning a black belt in karate, had received a learner's permit to drive and was hoping to eventually take her driving test.

People in the audience responded with applause and cheers as she listed each achievement. But then, Ms. Bergeron said something that quieted the room. Despite her many successes and a level of integration that once seemed impossible to imagine for someone with her disability, Ms. Bergeron said she still didn't have many close friends. Often, she added, "I felt lonely."

Ms. Bergeron's dilemma is especially poignant because people with Down syndrome and other developmental disabilities increasingly find themselves succeeding in mainstream society. They go to public schools, taking classes, joining sports teams and singing in the choir with classmates. They work at jobs in the community. But still, like Ms. Bergeron, they often find themselves caught between two worlds.

In Ms. Bergeron's rural hometown in upstate New York, there is only one other person her age with Down syndrome who lives nearby. Moreover, she didn't want to spend time with someone just because that person also had Down syndrome. And yet, she knew her life was different in many ways from those her own age who didn't have her disability. Her siblings had left home; she had not. They had full-time jobs; she did not. For a long time, the disquiet from this situation was something Ms. Bergeron could articulate but found difficult to ease.

During her speech, Ms. Bergeron didn't dwell on her feelings of isolation. Instead, she told the guests, "I am trying to focus on good times." Two weeks earlier, she had gotten engaged to Sujeet Desai, a musician who has Down syndrome. She always enjoys spending time with him, she said, and "he also understands where I am coming from." Then, she led everyone in singing "Happy Birthday" to Mr. Desai, who had turned 24 that day and was seated in the audience. The crowd, which had been subdued during her admission of feeling lonely, came to their feet. They started to applaud.

The thought that people with disabilities feel lonely makes many people uncomfortable because it strikes at the notion they are anything less than full participants in society. Advocates and disability-support groups are struggling to address an issue that in some ways has proven more intractable to change than access to schools or better housing.

Access Living, a Chicago-based center run primarily by people with disabilities, started a support group for women with disabilities who want to talk about concerns regarding sexuality, relationships and friendship. DateAble Inc., a dating service whose main clientele is people with disabilities, sponsors social activities in order for young people to meet, date and possibly marry. Best Buddies International Inc., which has chapters throughout the world, was founded by Anthony K. Shriver, out of a belief that people with and without disabilities have few opportunities to become friends with each other.

"Loneliness is a problem for all of us," said Mr. Shriver, whose aunt, Rosemary Kennedy, had an intellectual disability. "But it gets magnified 10 times for someone with a disability."

One August afternoon, Peggy Bergeron drove her daughter to visit Mr. Desai at his parents' home, on the shore of New York's Oneida Lake. When the couple wants to go on a date, they need someone to drive them and because the two families live an hour apart, they aren't able to get together as often as they would like. Their parents usually drop them off and then come back and pick them up. During one outing to the movies, Sindoor Desai, Mr. Desai's mother, bought the tickets because Mr. Desai is unsure about handling money.

Ms. Bergeron and Mr. Desai had seen each other at conventions sponsored by Down syndrome advocacy groups. Ms. Bergeron was a frequent motivational speaker. Mr. Desai, a musician, often performed on one of the six instruments that he plays. But they didn't introduce themselves until last summer, when Mr. Desai asked her to dance at a party. They hit it off, and had their first date in October, going with their parents to the mall. By April, they were engaged.

Mrs. Bergeron, who has three other children, says she never expected her youngest daughter to marry. Ms. Bergeron and Mr. Desai started dating about a year after Ms. Bergeron's father, Tim, was diagnosed with leukemia, for which he is still being treated. His illness, Mrs. Bergeron says, forced her for the first time to think seriously about her daughter's future. "I had to get real," she says. She knew Ms. Bergeron's older sister, Katie, 33, would be willing to offer her a place to live. But she didn't want Ms. Bergeron's siblings to consider her their responsibility.

The idea that Mr. Desai and Ms. Bergeron might spend their lives together as a married couple became "a beautiful alternative," she says. "Carrie hadn't been unhappy living with us," Mrs. Bergeron says, "but lately the loneliness had started getting too big again."

When Ms. Bergeron was growing up, her parents wanted her to spend time with all kinds of children, so they tried as much as possible to place her in regular classes in elementary school. But Ms. Bergeron had to repeat kindergarten, first grade and second grade. She would make friends, then her classmates advanced to the next grade, and Ms. Bergeron stayed behind.

In the third grade, her mother noticed other girls made plans to play after school and didn't invite Ms. Bergeron. "No one was mean to her. They were nice to Carrie in class, but they didn't think of including her outside of school," said Mrs. Bergeron. So she came up with a plan. She invited several girls over to play on a regular basis. She called them "buddy sitters," instead of baby sitters, and said she needed their help. "I didn't pay them," she says, "but I bought them small gifts and took Carrie and them out to the movies. I tried to make them feel like they had an important role in Carrie's life."

When Ms. Bergeron was 15, a young woman whose salary was paid by Medicaid started coming to the house to work as an aide. She would review Ms. Bergeron's homework, play games with her and take her to the movies. She soon became Ms. Bergeron's closest friend. But after a couple of years, the aide moved on, and others followed.

After Ms. Bergeron graduated from high school, she enrolled in a community-college program to get a teaching-assistant certificate. Her aide at the time went with her to class, taking notes and then going over them with her to be sure she understood the lessons. She would make small talk with people in class, and then introduce Ms. Bergeron. The two ate together in the cafeteria, and the aide threw parties at her home to allow Ms. Bergeron to meet more people. Although Ms. Bergeron enjoyed the company of the college students, she says no sustaining friendships ever developed. Everyone was always busy, she says. Her aide left for a new job in August.

"There were times when I got really down," Ms. Bergeron says. "I was very lonely. I didn't have anyone. Then I met Sujeet. When I am with him, the loneliness is gone."

As the car got closer to the Desais' house, Ms. Bergeron started to act giddy, giggling when she talked about Mr. Desai and her excitement at seeing him again. Mrs. Bergeron listened attentively as her daughter spoke. "They have a teenage quality to their love," she said. Mr. Desai calls Ms. Bergeron "Care Bear" and other pet names. He recorded himself singing love songs and playing music on cassettes that he sent her. Often, they start kissing in front of other people.

When Ms. Bergeron arrived at the Desais' house, her fiance played a riff on his drum set to greet her. "I was looking for a dream girl," he said, "and I found this one."

He said they were drawn together by shared interests, such as music, dancing and sports. "We can do things together," he said, "through my music, and her speaking. We won't stop dancing."

His mother, a dentist in Phoenix, N.Y., felt strongly that if they started to seriously date, it should result in a formal relationship. The Bergerons have "a long marriage, and we do too," said Dr. Desai. "We want our children to have that too."

Although Mrs. Bergeron is happy for her daughter, she acknowledges that she worries about Ms. Bergeron's ability to handle the disagreements that will inevitably arise once the couple start living together. Ms. Bergeron is routine-oriented. When something unexpected happens, she sometimes has trouble adjusting. "A lot of marriage is about being flexible," said Mrs. Bergeron. "Will Carrie be able to do that?"

Mrs. Bergeron had been candid with both the Desais and her daughter about her concerns. "I don't want Carrie to be a nag," she says. At one point, she raised the issue with her daughter: Didn't she worry that after they married, Ms. Bergeron might have to take care of Mr. Desai?

"Don't you take care of Daddy? Doesn't Sujeet's mother take care of her husband? Isn't that what wives do?" her mother says Ms. Bergeron responded. "She put me in my place," Mrs. Bergeron said. "I backed off."

No one knows how many people with Down syndrome have married; the numbers are believed to be small, but increasing as those with Down syndrome live longer and have greater expectations for what they can do. In the past, people with Down syndrome often lived in institutions, where they were segregated by sex and had few chances to socialize. These barriers are largely gone, but sexuality is still a taboo topic, rarely studied or discussed.

Even now, there are few studies on fertility and reproduction in people with Down syndrome. Case reports have documented successful pregnancies in women with Down syndrome, resulting in children born with Down syndrome and children with no disabilities. In one paper, doctors concluded the low frequency of births was probably the result more of isolation than anything else, and that was bound to change as people with Down syndrome lived in the wider community. A few years ago, Ms. Bergeron decided that she wouldn't have children.

There is a growing sense of the need to catch up, with junior highs and high schools starting to offer sex-education and social skills courses tailored to teens with Down syndrome and other cognitive disabilities. "There is no reason to think that they have a different libido," says William I. Cohen, who runs the Down Syndrome Center of Western Pennsylvania at Children's Hospital of Pittsburgh. "They want what we all want: friendship, companionship, love."

In some ways, Ms. Bergeron's preparations for her wedding -- scheduled for July -- are similar to that of any bride. She loves telling people how Mr. Desai proposed. It was in April, after a musical performance sponsored by a Down syndrome advocacy group at a theater in Albany, N.Y. Mr. Desai played piano, violin and clarinet as part of the show. Dressed in a black cape, black top hat, and white mask covering his eyes, Mr. Desai led Ms. Bergeron on stage to the theme of "Phantom of the Opera." Then he dropped to one knee and pulled a diamond ring out of a rose that he held, asking her to marry him in front of the audience. When, trembling, she said yes, friends and family gathered there stood and cheered.

She and her mother and sisters went shopping for a dress, and she ended up choosing a white gown, with wide straps decorated with sequins. She has already told her sister, Katie, who will be the maid of honor, that she wants a lingerie party. Every night at exactly nine, she and Mr. Desai talk on their cellphones, going over details about the meals and the band and the songs they want played. Celine Dion's "My Heart Will Go On," will be part of the celebration. They often talk for hours.

Ms. Bergeron acknowledges that planning their lives together is complex. Even with her accomplishments, she still needs assistance with many daily tasks. She will soon be responsible for running a house, and it is overwhelming for her to go to the grocery store by herself and shop for the week. She can cook, but prefers to have someone there to help her. She fears being alone in the house at night during a thunderstorm. She has never lived without her parents for an extended time. Mr. Desai lives in a residential facility in Rome, N.Y., with several other men with disabilities. But that facility has round-the-clock staff available.

After they marry, they plan to rent a place in Rome, N.Y., where Mr. Desai plays music in a nursing home and in the library, and works with an elementary-school band. His parents live a little less than an hour's drive away; her parents live a little farther. Aides will help during the day, but the couple will be by themselves at night. Their parents have talked about hiring someone to live next door and be available in case of emergencies.

Even planning a honeymoon is challenging. A family friend offered the couple the use of her house on Martha's Vineyard, Mass., after the wedding. "I go back and forth on it," said Mrs. Bergeron one afternoon to her husband, while they sat with Ms. Bergeron in the family's living room. "They need private time. How much should we really get involved with their honeymoon?" Finally, she turned to Ms. Bergeron, who stopped flipping pages in a bridal magazine. "How do you picture the honeymoon happening?" she said to her daughter.

"A typical honeymoon," Ms. Bergeron answered. "We want to do what anyone else would do on their honeymoon."

Then Mrs. Bergeron explained her concerns. Martha's Vineyard is an island. If their parents weren't nearby, who would help them if they needed something? How would the couple go shopping or to the beach or out to dinner? "Is it OK with you guys if we're nearby during the honeymoon?" Mrs. Bergeron asked. "You might need transportation." Ms. Bergeron said she didn't mind if their parents stayed on the island with them.

Upstairs in her bedroom, Ms. Bergeron described her relationship with Mr. Desai as a kind of fairy tale. On her wall were prints of Disney princesses. She pointed to the one of Cinderella, dancing in the arms of her Prince Charming. "I think I'll feel that way at my own wedding," she said.

She took out a journal that her fiance's mother had given her after she got engaged. Dr. Desai told Ms. Bergeron that sometimes all couples have trouble communicating their feelings to one another, and by writing her thoughts in her journal, she could find a way to share her feelings. Ms. Bergeron wanted to reread her entry from Valentine's Day, when she and Mr. Desai shared their first kiss. She had spent the day at his family's house. They watched a Power Rangers movie and played videogames. In the afternoon, they walked on the frozen lake outside the Desais' home, drawing a heart in the snow with their names inside. Later, while talking in his room, "Suj gave me his very first kiss," Ms. Bergeron wrote, "the best gift of Valentine's Day."

After the kiss, they kept talking. The kiss had been so quick Ms. Bergeron says she wasn't sure what had happened. "We were so excited and shocked," Ms. Bergeron wrote. "It felt so good."

Still, the realities had finally set in. There were financial issues to resolve. Ms. Bergeron relies on Medicaid for health coverage and an aide. Her living expenses, such as rent, clothing and groceries, are funded by monthly Social Security payments. One of the difficulties with getting married is that as a married couple, their Social Security benefits will be less than what they now receive separately.

When the couple first discussed getting married, Dr. Desai says she talked with the service coordinator of the state agency that had been helping her son. The coordinator felt the marriage might be too difficult, Dr. Desai says. Most programs are set up with the idea that they will be supporting individuals, not married couples.

So the couple turned to a new state-funded pilot program called "self-determination," in which friends and family work with a coordinator to help the person come up with a budget. They hoped this new program would give them flexibility to build a life together.

One evening, 10 people crowded around the Bergerons' dining-room table, including Ms. Bergeron's parents, her sister Katie, and family friends. This was the group of supporters helping to write a budget.

At one point, Ms. Bergeron appeared to be having trouble paying attention. In an article she had written for a Down syndrome advocacy magazine about her engagement and the discussions involved in planning their wedding, she wrote that many times, she and Mr. Desai didn't "understand all the different words used ... That sometimes makes us confused and worried."

The amount of things that needed to get done was daunting. They needed to hire aides and find a place to live in Rome, a city of about 35,000. Someone now drives Ms. Bergeron there every week, to walk around with her, showing routes she could take to the grocery store and the doctor's office. They want her to meet police and fire officers in town, so she would know people in case of emergency. Both she and Mr. Desai tend to be trusting of strangers who might take advantage of them. Family and friends worry about how they will fare at night, after aides go home.

At one point, the coordinator who is overseeing the process looked across the table at Ms. Bergeron. "You look sad," she said. "Are you sad?" Ms. Bergeron shook her head. "I'm not sad," she answered. She stared at the chart projected on the wall so everyone could see the list of her expenses. Under the new program, every aspect of the budget, down to karate and her YMCA membership, had to be approved by the New York State Office of Mental Retardation and Developmental Disabilities.

The coordinator explained it to her. "This much goes for rent. This much goes for food," she told Ms. Bergeron. "We have to do this. A budget is an important part of living on your own and living out in the world. It's an important part of the process of getting married."

Her mother gave her an encouraging smile. "Carrie, are you sure you really want to get married?" she joked. For the first time that evening, Ms. Bergeron's face lit up. "I am definitely getting married," she said.