There’s no better advocate for disabled kids and adults than fully engaged, lovingly encouraging parents. And when they’re no longer there for them, it’s up to the state â€” and some states are better advocates than others.
From the moment Marjorie Sullivan Lee learned her newborn son, Kevin, had Down syndrome she became his advocate.
Dismissing her pediatricianâ€™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 wasnâ€™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 isnâ€™t through. Sheâ€™s still Kevinâ€™s caregiver and recently published a book, â€œBloom Where You Are Planted,â€ the story of their family and their love for Kevin.
â€œI have a message to let people realize you can have a good life in spite of being diagnosed with Down syndrome,â€ 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 arenâ€™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 â€œown kind.â€