Sue Swenson is the incoming President of Inclusion International. Working out of the USA, we asked her about the state and progress of inclusive education in the USA.
Extended audio interview with Sue Swenson:
Q: How do you feel inclusive education is doing in your country?
A: In the US, there are pockets of excellence, and pockets of really awful practice, and pretty much everything in between. This judgment is based on expert opinions from many professionals and parents. We do not have excellent data sets at the federal level that allow me to know where the pockets of excellence are. We ask states and local school districts to report what percent of students with IEPs spend 80% or more of their time in general education environments. Never mind that most students with IEPs have only one of two goals on their IEP, and there would be no reason for them to leave the general education setting. So, it’s not a great number. There are about 18,000 separate school districts in the US. That’s a lot of variation.
Q: Is there resistance to the idea of inclusive education?
A: I have to say there is resistance to inclusive education. Part of it comes from residual judgments about old failed attempts at mainstreaming, or poorly-designed inclusion. Part of it comes from parents who really still expect the IEP to cure their child’s disability – so they want a lot of pull-out, separate therapy, or programs that are delivered in segregated settings that the parents believe are therapeutic. Part of it comes from ineffective practice, so a child is constantly removed from the learning environment because no one knows how to use multi-tiered systems of supports or positive behavioral interventions and supports. (See www.PBIS.org)
Q: Or is the resistance focused on identifying barriers and resource issues?
A: I think a lot of what looks like resistance is simply a lack of knowledge or assistance. We have a centre that focuses on school-wide transformation to include all children (those with disabilities, those learning English for the first time, those who come from high-poverty backgrounds). A big part of it is helping school leaders develop the tools and skills they need to undertake coordinated change by working with staff, parents, and other stakeholders to identify problems and resources that can be brought to bear to solve those problems. (See www.swiftschools.org)
Q: What do you think is the most promising factor in moving inclusion forward?
A: Honestly, I think there a couple of things. First, I think our culture is on a bumpy path to be more inclusive. Young people are less accepting of segregation, inequity, and exclusion than they were in the past. More and more young people grow up with strong values about diversity. They are more aware of their own power within schools and communities – this includes siblings of kids with disabilities but also neighbors and just plain kids who have a strong sense of social justice. Second, I think parents are figuring out that our special education law brings a placement risk for each IEP, and they are shifting more and more to what we call “504 plans” that really work more like the ADA in schools and don’t bring any risk of being “placed” into a separate setting.
Q: What role do you think groups like Inclusion International the Canadian Association for Community Living can play in this effort?
A: It is my fervent hope that more and more US citizen advocates will develop connections that allow them to see how children may be well-educated in other countries, where the focus is on rights, not so much on services. I think Inclusion International could play a big role if we can help to build networks that reach across national boundaries to help parents and self-advocates see what is universal in their experience.
Q: Can you share a personal experience with a child/parent/teacher where inclusion was successful and made a difference?
A: Well, my own son’s inclusion was often excellent but not always. I think some people don’t understand the value of inclusion for profoundly disabled kids, like my Charlie was. He did not walk or talk, he could not demonstrate his learning using any of the communication tools that were available to him, he had tendencies toward stimming and vocalizing – but he also learned very valuable things from being included, even if he was included imperfectly. He learned how to get along with other people, how to tell the difference between somebody he could trust and somebody he couldn’t. He learned how to be with other people, in community. He spent his whole life dependent on others for care, so learning about trust was really important. He became, I think, and excellent judge of character and was able to convey his opinions to people who knew him well. He learned that he was not, in fact, the center of the universe. There was one teacher, early on, who really made this happen. She let inclusion be an organic situation for Charlie, not driven by a plan or a contract, but driven by her observation and response. That took a lot of trust between her and us – but it was really worth it.
Q: Can you share anything else about inclusive education?
A: I still think we don’t spend nearly enough time thinking about the value of inclusive classrooms for all of the children. Yes, I am aware of studies of test scores going up for all of the kids. But how do we measure the kindness and compassion they learn? Even – maybe especially – the “smartest” kids need to learn that everyone has a place in our community. How do we value that? I think in today’s world, it should be the key point.
Sue got involved with disability advocacy because her middle son, Charlie, had profound disabilities. Sue was very active in the Minneapolis schools as well as in State and Federal advocacy while working as a professional services marketing director before being named a Kennedy Fellow in the US Senate in 1996. There she worked for the Chairman of the Senate Subcommittee on Disability Policy on both the Individuals with Disabilities Education Act and the Developmental Disabilities Services and Bill of Rights Act.
Sue just completed a term in the Obama administration in the US Department of Education as Assistant Secretary for Special Education and Rehabilitative Services. These two federal programs regulate and fund states to help them support people with disabilities in American schools and workplaces. She represented the US Department of Education on the President’s Committee for People with Intellectual Disabilities.
Sue previously served as the Commissioner for Developmental Disabilities in the US Department of Health and Human Services in the Clinton administration, as executive director of the national chapter of The Arc, and as Executive Director of the Joseph P. Kennedy, Jr. Foundation. She was educated at the University of Chicago (AB, AM) and earned an MBA at the University of Minnesota.
