From the moment Marjorie Sullivan Lee learned her newborn son, Kevin, had Down syndrome she became his advocate.
Dismissing her pediatrician’s suggestion that Kevin be placed in an institution, Lee and her husband, John, decided Kevin would grow up at home with his five older siblings and be part of the community. That wasn’t necessarily the norm in 1960.
Lee battled school officials for years to let Kevin attend a regular school until he became the first person with Down syndrome to graduate from Glenbard East High School in Lombard.
After his graduation, she rejected the idea his only source of employment could be a sheltered workshop. She worked with other parents to start the Parents Alliance Employment Project that, 30 years later, still is finding job opportunities for people with cognitive disabilities.
At age 90, Lee isn’t through. She’s still Kevin’s caregiver and recently published a book, “Bloom Where You Are Planted,” the story of their family and their love for Kevin.
“I have a message to let people realize you can have a good life in spite of being diagnosed with Down syndrome,” Lee said.
She said she believes that message is needed in a society where parents have the option to abort if they learn their child will be born with a disability. She also wants parents who have children with disabilities to realize that, despite the progress, all the problems with providing inclusion aren’t yet solved.
Finally, she emphasizes that people with cognitive disabilities want to be part of the larger community, despite arguments from some quarters they would rather be with their “own kind.”
“I want my son to be part of the normal community, but I don’t believe in working just for my son; I believe in working for other people like him,” Lee said. “I have often rubbed people the wrong way. A lot of people don’t agree with me.”
Lou Brown, professor emeritus of special education at the University of Wisconsin-Madison, said Lee was in the forefront of those working to include people with cognitive disabilities in society when her son was in school.
Madison already was practicing inclusion in its schools, but northern Illinois wasn’t when Lee sought his help and advice.
“She took on the establishment. She was a pioneer. She was tenacious. She was smart,” he said. “She was part of a movement.”
Challenge the norm
When Kevin was born, Lee said she had little personal experience with people with disabilities despite a stint as an administrative assistant at Easter Seals.
“Kevin was a whole new world to me,” she said.
She jumped into that world with both feet. She became part of a group of mothers who contacted other mothers of newborns in the hospital to urge them to take home their Down syndrome babies and love them as their other children. The program led to the founding of the National Association of Down syndrome, with Lee’s husband as its first president.
Lee will have a table displaying her book when the group holds a “Celebrating Down syndrome” conference Sept. 29 in Rosemont.
Her Catholic faith led her to take the stance she did, but even the religious establishment didn’t always get it right, Lee said.
She and her husband rejected a young priest’s offer to give Kevin a private baptism. Instead Lee encouraged a friend to tell everyone in their parish and neighborhood that her newborn son had Down syndrome.
Later, she and her husband worked with a group of other parents to provide religious special education for children who previously were denied access to confirmation and the Holy Eucharist.
Education was an ongoing battle. During Kevin’s formative years in Lombard, he was sent to four or five different schools, all well outside his neighborhood. Only when a federal law that was passed in 1975 emphasized that students should be placed in “the least restrictive environment” were the Lees able to argue successfully — after a two-year appeal process — that their son should attend the neighborhood high school.
Kevin entered Glenbard East High School at age 17 and graduated four years later in 1982.
Being around peers his own age led Kevin to assert more independence, Lee said. He began choosing his own school lunches and pushed the plaid pants his mother had bought for him to the back of the closet. Lee rejoiced in her son’s development.
Kevin also joined the high school wrestling team and, despite a lot of bench warming, rode the team bus to other schools and participated in some demonstration matches.
Lee said school administrators who once resisted her insistence that Kevin be part of the regular student population later became supporters of inclusion.
“Eventually over the years, people suddenly were on the same team as me,” she said.
Kevin’s graduation from high school brought new challenges. A Special Education Parents Alliance she and her husband helped create started focusing on finding employment opportunities for young adults, and eventually changed its name to the Parents Alliance Employment Project.
Lee served as the unpaid program director for six years and will be honored as the keynote speaker when the Lisle-based group celebrates its 30th anniversary in October. Brown said the Parents Alliance Employment Project helped serve as a model for other programs.
“What they did there was influential all over the country,” he said. “She (Lee) doesn’t really know the effect she’s had on other people locally and nationally.”
Views on inclusion
Jane Hodgkinson, the former executive director of Western DuPage Special Recreation Association, served on the Parents Alliance Employment Project board for 16 or 17 years.
She laughs when she recalls how Lee asked her to join. A proponent of full inclusion, Lee considered the special recreation programs WDSRA offered a type of segregation.
“I just want you to know I don’t agree with what you do, but your constituents really like you,” Lee told Hodgkinson.
Hodgkinson said when the fledging organization needed a desk, the Lees might take one out of their own home, and on a few occasions paid the one staff person out of their own pockets.
“Marjorie was absolutely the driving force for the board,” Hodgkinson said.
She and Lee became friends, although they never reached an agreement on their views of inclusion. Hodgkinson said parents should decide when inclusion is appropriate for their children, and sometimes separate activities give children with disabilities opportunities they would not have otherwise.
“In Marjorie’s quest to find Kevin only inclusive activities, it’s held him back,” she said.
But Hodgkinson has never doubted Lee’s love for her son. She admired the Lee family’s togetherness and said she held up Lee as an example to other parents of how to be advocates for their children.
“She is a remarkable woman,” Hodgkinson said. “She is not waiting for anything. She is still going to be an advocate at her age.”
Lee and Kevin, now 51, now live in a condo near the College of DuPage in Glen Ellyn and have long taken advantage of its programs. Kevin has a transcript covering 30 years of physical education and individualized reading credits.
Jeanne Madoch, a former adjunct instructor at COD, worked with Kevin in a self-structured fitness program for about a dozen years. Madoch said she met Lee and her husband when they were taking a water aerobics class and Lee began talking about Kevin.
“She’s always searching for more things for him to do,” she said. “She’s a go-getter. She has a cause.”
Although not as outgoing as his mother, Kevin clearly has enjoyed the contacts his COD activities have given him, Madoch said.
“He’s funny. He’s got a real sense of humor. He’s quite the character,” she said.
Paid employment didn’t work out for Kevin, but for the past 20 years he has volunteered one day a week shredding documents at a government agency. He’s traveled independently by plane to visit his siblings in other states and shares housekeeping duties with his mother.
While he doesn’t drive, he’s mechanically adept. When the family had a vacation home in Michigan, Kevin drove the small tractor mower. He’s an expert on the remote controls for the TV, DVD and VHS, and has limited skills on the laptop computer.
After Parkinson’s disease required his father to use a wheelchair, Kevin became adept at folding the chair and assembling the lift that allowed the chair to be loaded in the trunk of the car.
Kevin’s father died seven years ago. Lee said the need to be responsible for Kevin has kept her going, but she is realistic about her own mortality. She said her hope is that Kevin will be able to continue to live in their condo with some support after she is gone.
“He is a good man,” she said. “He has a great deal of empathy for people ... He’s accomplished a lot more than we dared to hope.”