Mother tells the story of her special needs son’s inclusion
State Rep. Dan Miller, D-Mt. Lebanon, thanks Beth El Congregation for hosting his Children and Youth Disability and Mental Health Summit.
As president-elect of Inclusion International, Sue Swenson brings a wealth of personal experience with the United Kingdom-based organization’s main focus.
“Charlie never walked and he never talked,” she said about her middle son, “but he was included in our neighborhood school starting in second grade.”
Swenson served as keynote speaker March 22 for the opening of the three-day Parent Education and Advocacy Leadership Center’s Inclusive Communities Conference. The event, at Beth El Congregation in Scott Township, was held in conjunction with the fourth annual Children and Youth Disability and Mental Health Summit organized by state Rep. Dan Miller, D-Mt. Lebanon.
The story of Charlie Swenson, who died in 2013 at age 30, begins in the state where the Swensons lived when their children – Will and Eric are Charlie’s brothers – were young.
“There were people in Minnesota who would go to the legislature and say, ‘Children with disabilities need to go to school with people of their own kind,'” Sue Swenson recalled.
In response, she’d offer a counterpoint to state officials.
“My son needs to go to school with people of his own kind: human children.”
Charlie started his education at a school for children with special needs, riding on a bus an hour in each direction daily. Eventually, Sue was able to enroll him at the neighborhood school Will attended, but in a classroom separate from other second-graders.
One day, she asked the second-grade teacher: “Would you mind if Charlie came in here after lunch, because I know you do storytime. Could he just be included?”
The teacher agreed. Two weeks later, she called Swenson to tell her:
“The children don’t want him to go back to that little room. They think it’s sad. They would like him to stay here all afternoon. Would that be OK?”
And after a couple of more weeks?
“The kids think he would like science. We do that in the morning, so they want him to come all day.”
Still later, the teacher acknowledged that Charlie ended up blending in well.
“So she couldn’t tell the difference between my big, blond, nonverbal, grabby, legally blind, wheelchair-riding son and all of the other second-graders in terms of their behavior and interaction in the class,” Swenson said.
“That’s when the light bulb went on, that Charlie, more than anything else, needed to learn how to be with other people,” she continued. “And so inclusion, then, became my battle cry.”
The school’s environment adapted accordingly, primarily through her efforts, while the young Swensons were attending.
“When I left, the Red Sea closed behind me,” Sue said. “And that’s the problem. You work really hard as an advocate. You try to make something work. You get a system set up. You think, oh, this is going to be great. It closes up behind you, and they forget that there’s something they should be working on.”
Swenson, who went on to serve as commissioner for development disabilities in the Clinton administration and acting assistant secretary for the Office of Special Education and Rehabilitative Services in the Obama administration, recommended an alternative to the prevailing mindset – “How do I get what I need for me?” – when addressing inclusion for people with disabilities.
“How do I work with everybody else to make sure that everybody else has what they need?” she said. “That’s the only way we’re going to build a system that is sustainable in the long run.”
She closed with some perspective about what she has gained through her experiences.
“When we live with disability in our lives, our lives are more than they would otherwise be,” Swenson said. “We have a closer understanding of common humanity and what it means, and how we can work together, and how we can overcome personal and political challenges.”
Visit inclusion-international.org and pealcenter.org.