Changing Our Communities for the Better
It's a gorgeous day in late summer, and there's a crowd at the local putt-putt golf course. The sounds of waterfalls and laughter float on the breeze. At the sixth hole, a group of kids gather around their friend as he squares up and aims to sink a hole in one. With a sharp tap, the ball sails down the green, around a corner and under a windmill. The kids, cheering for their friend, could be here for a school trip or just an afternoon of fun, but they're actually from Kennedy Krieger. They're here for a therapeutic program that helps children with developmental disabilities learn to transition from the hospital to community life.
Now imagine a very different scene back in the 1920s…
It's a day at the fair, and, despite the summer heat, the afternoon holds the promise of cotton candy, carnival games, and ferris wheel rides. But a walk through the exhibit hall brings an unpleasant surprise: a poster from the American Eugenics Society that states, "Some people were born to be a burden on others." The "some people" it refers to are those with developmental disabilities. To a modern audience, the idea is horrific, but what might seem shocking today was not unexpected in an era when people with disabilities sometimes underwent forced sterilization, and children with special needs were quietly institutionalized for their entire lives.
It was in this atmosphere that Dr. Winthrop Phelps founded the Children's Rehabilitation Institute in 1937, which pioneered the treatment and care of children with cerebral palsy. Phelps firmly believed that children with cerebral palsy could receive rehabilitative services and, with the right support, truly succeed and thrive in home and community life.
It was this very philosophy that in 1945 prompted a mother to take her 15-month-old daughter across the country from Cleveland, Ohio, to Baltimore to see Dr. Phelps. That 15-month-old was Margaret Barno, an identical twin who had cerebral palsy, a condition that results from injury to the brain before, during, or shortly following birth. Although it permanently affects body movement and muscle coordination, fortunately, it doesn't worsen over time. Today, at 64, Marnie remembers the critical early work with Dr. Phelps.
"His goal was to treat each child like any other child. Not to do anything different for that child, but to encourage that child to go up and down steps, to do everything similar to the way any other child would," Marnie says.
The key to Dr. Phelps' success, says Marnie, was that he took time to speak with each of his patients to understand their situation and design a treatment approach tailored to their individual needs, with the underlying goal of helping each child feel as much a part of the community as any other child would.
"It was as if he and I were the only two people in the universe," she says. "He was always saying things like 'You can do anything you want to,' and that made a world of difference to me." Marnie, who went on to college and earned three master's degrees, one of which was in social work, is quick to point out the pivotal role that Dr. Phelps played in her life: "I'm so grateful for him because he put my parents on the right path at a time when other people were just kind of pushing disabled people aside."
It was these negative perceptions and social attitudes that, in the 1960s, lead President John F. Kennedy, whose sister was mentally disabled, to sign a series of bills into law that would increase resources and research on intellectual disabilities. Public Law 88-164 authorized unprecedented funding for developmental research centers in university affiliated facilities and, because the Children's Rehabilitation Institute had been affiliated with the Johns Hopkins University since 1961, it became one of the nation's first University Centers for Excellence in Developmental Disabilities (UCEDD). These Centers work with people with disabilities, their families, state and local government agencies, and community providers in projects that offer training, technical assistance, service, research, and information.
Building on this foundation, the Children's Rehabilitation Institute and Johns Hopkins University embarked on a joint venture to establish the John F. Kennedy Institute for the Habilitation of the Mentally and Physically Handicapped Child. In 1968, the Institute was named in memory of President Kennedy and his pioneering work to protect the rights and improve the lives of people with disabilities. Two decades later, it became the Kennedy Krieger Institute in honor of longtime supporter Zanvyl Krieger.
But despite President Kennedy's landmark work, there is still much work to be done.
"Has the environment changed in terms of accessibility of services? Yes," says Marnie. "Have people's reactions changed? No."
She remembers a wet day in 1976 when she ducked under a storefront to escape the rain. She stood, waiting out the storm, when a woman approached her: "The woman came up to me and said, 'You've had a little too much to drink, haven't you?' I said 'Pardon me, I was born with cerebral palsy. I don't drink. Next time you decide to judge someone, remember this conversation.'"
This is only one example from a long life of battling misunderstanding and, in some cases, outright discrimination, and Marnie has made it a personal mission to educate people about developmental disabilities. She's been a guest columnist for her local paper and even spoken at a neighborhood preschool.
For the last 70 years, the researchers, clinicians, and educators at Kennedy Krieger have been helping patients and families deal with the reality of developmental disabilities. To better address the challenges these families face, the Institute recently expanded its commitment to providing community-based programs by reorganizing and naming its UCEDD the Maryland Center for Developmental Disabilities (MCDD).
"The good thing about UCEDDs is that there is at least one in every state," says Judy Levy, acting director of the MCDD. "That means there is this tremendous network across the US and into the US territories. It's far-reaching, and Marylanders have access to a unique source of knowledge through this nationwide collaboration."
It's this very type of increased exposure to and understanding of the challenges that Marnie and other people with developmental disabilities face that the MCDD will address through a variety of outreach services which will hopefully help to change societal attitudes.
"Sure, we've come a long way," says Levy, "but we still have a way to go before people with developmental disabilities can live in a community and feel like they're truly a part of it."
"It's our hope," she adds, "that this Center will be able to facilitate and hasten the process of increasing understanding and shifting attitudes that previously would have taken decades."