When I was a young girl living in the North East of England, our main form of transport out of the small town was a public bus. My family and I would sit in the bus shelter waiting for the bus to arrive with a sense of positive anticipation of the trip we were going to take. However, on occasion we would wait and the bus would not arrive at the scheduled time; sometimes the bus was late and sometimes it did not come at all. On many of these occasions, we had to return home or change our plans for the day. We never knew if the bus that was late would actually come, and I remember vividly, the sense of worry I had about whether the bus would ever come at all.
This feeling of worry is something that I currently experience as I work in the South West of Florida. The focus of my concern is about how far we have actually come as a community to develop and support meaningful inclusion opportunities for students with severe and complex disabilities. Two recent experiences have brought this unease to the forefront.
In a recent conversation with a mom, I was told about her 3rd grade son with Down Syndrome, Sean. In his school career so far, Sean has had a series of schooling experiences that have been both inclusive and self contained. As his mom relayed his story, it illustrated to me the sketchy nature of inclusive provision in the state. For two years Sean was able to take advantage of a co teach inclusion classroom. The next year he was placed in a general education first grade classroom with the constant support of his mother. Going into 3rd grade, he was placed in a segregated class for younger students, because he was not able to read and was not seen to ‘fit in’ academically with his age appropriate Varying Exceptionalities (VE) classroom. This story showed me how tenuous inclusive opportunities are for families and children alike. It illustrates how professionals can look at a young boy, and with the ‘best professional intentions’; adopt the most dangerous assumption, leading to segregation. The stumbling block for Sean is that he cannot read, Mom notes that he has not actually received reading instruction so far in his school career. In order to be included it appears that children must read and therefore Sean must earn his way into the general education classroom by becoming a reader.
I was reminded of another family in a similar situation in the North East of England over ten years ago. Nadia is a sister to four siblings and a vivacious daughter to Katie and Andy. She is deaf and has Cerebral Palsy. Nadia was six years old when I first met her. At the time, the family lived in a small village and Nadia attended a kindergarten class that was attached to the elementary school her brother and sisters attended. All the children walked to school together. Nadia made lots of friends and was a central part of the school community. Unfortunately, at the end of her kindergarten year the school began a conversation about a separate 1st grade provision for Nadia. Professionals believed Nadia had severe intellectual disabilities because of the complexity of her cerebral palsy and deafness. They believed the general education setting was not an appropriate placement for her. Again a ‘most dangerous assumption’ was adopted and it was suggested that Nadia attend a segregated center school many miles away from the village. I had the pleasure of meeting Nadia who indeed presented as a very complex little girl. Mom and Dad believed she was bright, but the assessment processes administered did not represent her ability, just her disability. When I met Nadia, I indeed encountered a very bright and alert young girl who enjoyed playing and teasing her brothers and sisters. She was a beautiful communicator, especially with her friends, but alas not in the formal communication systems we share as a community.
The family believed strongly that they wanted all of their children to attend the same school, so they began a search around the UK for a school that would welcome them all. They found one, over 300 miles away and decided to relocate the whole family. Ten years later, last week, I received an email giving me a progress report on Nadia. She has enjoyed a successful school career and just passed her exams that allow her to attend college. She is an active member on the local community council and is working towards a career in the health services. She has sleepovers with an array of friends, has a penchant for black nail varnish and appears very ‘up’ on fashion trends! School has clearly been so much more than academics for Nadia and illustrates the powerful impact of the hidden as well as explicit curriculum experiences in a student’s school career. I wonder what Nadia’s story would be if Kate and Andy had acquiesced to professional advice and sent Nadia to the segregated special school.
In order to remain in general education successfully, Nadia received a tremendous amount of support. Her schools have been creative and open to learning about Nadia with the strong acknowledgement that Nadia belonged in the school. The use of Assistive Technology showed Nadia has many more abilities than her obvious impairments. As professionals, it is apparent in research, professional literature and pockets of practice that we appreciate that meaningful inclusion is complex. We appreciate it requires a systemic approach to change that acknowledges Universal Design for Learning. We also are aware of the role of positive professional attitudes and the need to believe that all children can learn.
However, I feel as if I am waiting at a bus stop and that the bus is just not arriving. In my twelve years as a teacher educator my approach to professional development and systems change has been an optimistic one, believing that we will build effective inclusive schools. I trust that I am contributing to the building of such schools slowly and strongly as I impact professional attitudes, policies and practices through my teaching, service and research. In August of 2009, I am troubled that in a few weeks, when school resumes, there are many children, like Nadia and Sean; who are waiting at ‘bus stops’ around the country for a bus to take them to their neighborhood community school. But, that bus may never come, or if it comes, as in the story of Sean, it has frequent breakdowns. I think about how many children we deprive of a rigorous and relevant general education because we use particular systems and processes of assessment and then the children do not ‘fit in’ to the status quo of current general education provision. All of this pondering poses many questions a couple of which keep coming to mind:
- As professionals, in the field of developing greater inclusion, how do we ensure more immediate positive change in attitudes, policy and practices?
- Where is the sense of urgency for change that will enable future Seans and Nadias to belong and be valued in their local school, and go onto enjoy the hidden and explicit curriculum of the school?
Author Biography: Phyllis Jones is an associate professor in Special Education at the University of SouthFlorida. Her research interests include inclusion, insider perspectives, andthe education of teachers of students with low incidence disabilities. She iscurrently Principal Investigator of a project that supports meaningful accessto general education for students with low incidence disabilities.