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Living

She Was Unstoppable — Until She Wasn't

Activist Laura Lee was the first person with Down syndrome to testify before a U.S. congressional committee, and left a huge impact before her recent death from heart failure

Down
By The News Whatsapp Twitter Facebook Share
2 years ago

THERESA VARGAS

THE WASHINGTON POST

Laura Lee took pride in her résumé. On it, separated by bold lettering and bullet points, she listed one achievement after another: She graduated from George Mason University. She worked at the World Bank. She volunteered at a food bank. She spoke at national conventions.

Not mentioned: She was born with Down syndrome.

For the 400,000 Americans like her who are often characterized by their limitations, Lee changed what they and their families viewed as possible. She was the first person with Down syndrome many people saw participate on panels. Or go to college. Or work in a professional setting. At the World Bank, where she was an office assistant earning $12.24 an hour, her name was on her office door. If the cruelest part of Down syndrome comes from the walls it erects, the ultimate joy for many people in the intellectual disabilities community came in watching Lee leap over those walls, time and again. In many ways, she seemed unstoppable — until she wasn’t.

Lee usually awoke and got dressed on her own. So when she wasn’t up on the morning of Feb. 24, and it looked like she might miss a scheduled art class, her mother went to her bedroom in their Northern Virginia home to check on her. There, she discovered her daughter had died in her sleep at age 33. Her heart had stopped.

“It was a shock,” said Lee’s mother, Stephanie Lee. The day before, “she did Pilates and volunteered at the food bank and went to Giant to get that sushi she liked.”

The death has left not only her family mourning, but thousands of people across the country, some who knew Lee and others who simply admired her as a trailblazer. On Saturday, the family will hold a funeral service for Lee in Fairfax County, but already the tributes have begun.

“There are things that she started that I could not have imagined would be there for my son,” said Ricki Sabia, of Silver Spring, Maryland, whose son Steve, 24, has Down syndrome and will move into his own apartment with friends in the coming weeks. “Just the idea that somebody with Down syndrome could go to college, that has impacts as early as kindergarten. Now we have a goal.”

Sabia, a senior policy adviser with the National Down Syndrome Congress, posted about Lee’s death on one of the organization’s Facebook pages, and more than 26,000 people have responded.

“They’re devastated for the family, and they are devastated for the community,” Sabia said. “There are some parents who have been told by others that their child will not accomplish this or accomplish that, and then they see someone like Laura and they realize I can’t put limits on my child, I don’t know what my child will achieve.”

CAN’T BE ORDINARY? BE EXTRAORDINARY

From the moment she was born on Oct. 8, 1982, with an extra chromosome, Laura Lee defied odds. Five holes and a missing valve in her heart threatened to take her from her parents before they could even worry about her intellectual abilities. At two months old, she had her first major open heart surgery, and she would have four more in her lifetime.

“In her early life, we just wanted her to live,” her 77-year-old father, Gen Lee, said sitting in the family’s home in Oakton, Virginia, one recent afternoon. Pictures of his daughter fill the room. Her dancing. Her riding a horse. Her skiing. Her meeting Bill Clinton. “We weren’t thinking of her future then.”

When they finally did consider what her life might look like, they found little encouragement. A doctor asked if they wanted to institutionalize her. And the only book they could find in the library about her condition used a word no longer tolerated: mongolism.

Her parents, who also have two older children, faced a choice. They could lament a life that could never be ordinary or work with their daughter to create one that was extraordinary.

Stephanie and Gen Lee talk about the loss of their daughter Laura and her legacy at their home in Oakton, Virginia. MUST CREDIT: Pete Marovich for The Washington Post.

Stephanie and Gen Lee talk about the loss of their daughter Laura and her legacy at their home in Oakton, Virginia. Photo: Pete Marovich/The Washington Post.

Stephanie Lee, 65, who once worked as a legislative assistant on Capitol Hill and has become a national advocate for a more inclusive educational system, said she and her husband decided early on to follow their daughter’s lead. When she grew bored sitting in a public school cafeteria, not allowed to participate in any school-wide activities, they and several other parents approached Paul VI Catholic High School with the idea of creating a program for students with intellectual disabilities.

At the time, it would be only the second program of its kind in the country at a Catholic school — if they could get it running. There was no funding, so the parents raised it. The only space was a decrepit projector room so the parents cleaned and painted it. When the program, called Options because that’s what it gave them, was finally started on a trial basis in 1998, it was decided that a mentor program should be formed between students at the school and those in the new program. Gen Lee still cries when he remembers how the captain of the football team volunteered to be a mentor, setting the tone for the entire student body.

Megan Battle was a freshman at the school when Laura Lee was a sophomore. Battle had no experience with people with intellectual disabilities and all the teenage angst of fitting into a new school when Lee and another student in the Options program chose her as their friend. “I was like, ‘Now what do I do?’ ” Battle recalled recently.

But by her junior year, Battle was sharing a limo to the prom with Lee and her classmates and cheering Lee on as she rocked out on an inflatable guitar by the stage. Later in college, Battle gave up studying nursing for special education and now works as assistant director of the Options program at the same school where she met Lee. What started as a program with six students now serves 16 a year. Administrators also receive calls from schools nationwide asking how they might replicate the program.

“I needed that friendship more than Laura did,” Battle said. “Everything I am now and everything I hope to do in the future is fueled and driven by those friendships.”

A LASTING IMPACT

Stephanie Lee didn’t always know when her daughter would take the microphone from her to speak about educational inclusion. When she was younger, the dark-haired girl with an easy smile would stand quietly next to her mother at the lectern. Later she would write down what she wanted her mother to say for her. Eventually, she began giving her own speeches, complete with a PowerPoint presentation. Her mother said Lee was at a hearing. She also spoke regularly at national conventions for the Down syndrome community.

In one presentation she described her days at George Mason University, where she graduated from the LIFE Program: “I like living in the dorm. I am very good at doing my own laundry. I am very good in science class. We talked about global warming and the earth. I liked reading and math classes, too!”

“I was so proud of her because these things weren’t easy for her,” Stephanie Lee said. Her daughter’s words were often halting and hard to understand, so she would speak deliberately to make sure she was understood. Sometimes she could be heard giving herself a pep talk beforehand.

“I think Laura had a big impact on people,” her mother said. “First through her presence. Then through her actions. And finally through her words.”

I think Laura had a big impact on people, first through her presence. Then through her actions. And finally through her words.”

-Stephanie Lee. Mother of Downs Syndrome activist Laura Lee

Lee’s parents gave her a cellphone, and she used it often to text them, always signing off the same way: “Your sweet, sweet daughter.”

When Lee was a senior in high school, she asked her parents where she should attend college, as both her older siblings had done and many of her classmates would be doing. They could find nothing local. So they, along with a handful of other parents whose children were also graduating from Paul VI, met with Michael Behrmann, a professor at George Mason University.

That was the beginning of the LIFE Program, the first public university program of its kind for students with intellectual disabilities. The first year, it had three students. Now, the program has more than 50 students, and about 6,500 people are enrolled in more than 250 post-secondary programs across the country for students with intellectual disabilities.

As part of the program, students can live in residential housing and take a mix of required and elective courses. They can also participate in campus activities. Some have managed sports teams. Others have participated in clubs. Just recently one student joined a fraternity.

“The students are really integrated into the life of the university,” Behrmann said. And like all college students, he said, “they do grow up, they do mature, they do become more independent.”

He called Lee “a pioneer” and said she will be very missed.

“It’s already very difficult to lose a student, even an alumni,” LIFE Program Director Heidi Graff said. “But it’s especially difficult to lose one of the leaders of the program.”

Graff said one student who lived in the dorm with Lee has come by her office frequently in recent days to talk about his friend. Another student with Down syndrome left messages daily for Graff before visiting her one afternoon to say “I’m just checking on you because I know you’re sad. But she’s in our hearts, and we’re going to be okay.”

“It’s a very small community and so when one achieves such greatness the others feel they can rise to that as well,” Graff said. “They are not only changing their perception of all they can do, but they are changing our perception of what they can do – and maybe that might be more important.”

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