scorgie picKate Scorgie is a professor in the Department of Advanced Studies in Education at Azusa Pacific University where she teaches courses in educational psychology, research for educators, and adult learning. Her research interests include families of children with disabilities, self-determination of persons with disabilities, participative case study pedagogy and transformative learning.

A father drops his child off at school. He lingers to watch as he crosses the playing field and enters a bungalow classroom at the back of the school ground. “Each step,” he confides, “is an ache in my heart. With each step my child is announcing to all who care to notice, ‘I’m special ed. I’m special ed.’”

A mother brings a needed book to her son’s classroom. She notices him seated off in a corner working alone while the rest of the class is busily absorbed in their group activities. “Imagine,” she laments, “he sits alone . . . and this is every day of his life.”

Another mother describes how her son has stopped asking for assistance in the classroom since being placed in a pull-out class for reading instruction. “He just doesn’t want to put up his hand anymore—to ask for help. He thinks the other kids will think he’s stupid.”

For fifteen years I have been listening to the stories of parents of children with disabilities. Typically these stories begin with accounts of academic struggle or classroom behavior issues, followed by numerous meetings with teachers, administrators and counselors, a barrage of assessments and, finally, a diagnosis—and a label.

It is often an excruciating time for parents. This is not because the underlying difficulty with learning or attention has finally been pinpointed. It is because parents fear that labels like “learning disability” and “attention deficit disorder” are loaded with hidden inferences that can have far-reaching consequences on their child’s education experience.

Many parents quickly become aware of legal provisions like least restrictive environment and zero reject (Jimenez & Graf, 2008). Their concerns about their child’s placement, however, have much deeper implications—implications that can challenge our understanding of inclusion. When I ask graduate education students to define inclusion, they give the standard description, the meaningful involvement and participation of children with disabilities in general education classrooms and school environments. To these students, inclusion has to do with physical placement. But to parents, inclusion is about belonging and having value.

Family psychologist and researcher Pauline Boss contends that when we think of family composition; that is, when we differentiate between who is considered in and who is out of a family unit, we are actually considering two ways of defining a family. One is according to physical membership; that is, about who belongs by means of birth, adoption or marriage. The second, and often more important, is the psychological membership, or, in other words, those who are valued, wanted and celebrated. Boss explains that to be a physical member of a family, but marginalized or overlooked, can cause long-term confusion and pain.

The same is true of other group settings like schools. When one is considered a nominal member of a group, by, for example, being listed on a general education class roster, but is treated as if invisible, unwanted or unwelcome, the resultant ache of marginalization can affect one’s identity and performance in school, and perhaps even beyond. That’s why to parents, inclusion goes beyond having one’s name on a class roster; it also involves whether the child is a valued and celebrated member of that class or school.

Parents invite us to look beyond nominal membership in our classes and schools, and ask:
• Who is valued and celebrated in this school?
• What are the criteria by which students, or groups of students, are valued and celebrated? Are these criteria inclusive?
• What students, or groups of students, are devalued or marginalized, or left out of school-wide involvement such as school spirit activities, the arts, or clubs?
• How can we demonstrate valuing and inclusion of each and every student in this school?

It’s important for educators to realize that diagnosis of disability introduces a paradoxical dilemma for parents. On the one hand, parents know that diagnosis is necessary to obtain the services their child needs for academic and life success. On the other, however, parents fear that a label will have unintended consequences that will affect their child’s experience in school, socially and academically, and may even have implications that reach beyond school.

Parents of children with disabilities long for what all parents desire—that their children will be valued and welcomed as members of their school communities. They want their children to encounter teachers who can help them discover and develop their strengths in ways that imbue visions of a positive, possible self—now and in the future. But, most of all, they want to remind us that a child by any other name, is, first and foremost, a child . . .

Boss, P. (2006). Loss, trauma, and resilience: Therapeutic work with ambiguous loss. New York: W. W. Norton and Company.

Jimenez, T. C., & Graf, V. L. (2008). Education for all: Critical issues in the education of children and youth. San Francisco: Jossey-Bass.

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2 Responses to “A child by any other name…by Kate Scorgie”

  1. Sandi on 10/26/09 11:53 PM US/Eastern

    Hi, I just wanted to say that after reading this I am almost glad that my 3 yr old daughter who has significant cognitive impairment due to Smith Magenis Syndrome is probably one of the lucky ones. She will be fortunate enough to most likely be completely unaware of this very sad and lonely reality which too many of our special kids and parents of are unfairly delt.

  2. Kate Scorgie on 10/28/09 2:11 AM US/Eastern

    Hi Sandi:

    I want to create a story of hope for you and your lovely 3 yr old. . . Pauline Boss, to whom I referred in the blog, talks about the importance of sharing stories. Stories, she says, help us enter into the lived experience of another. And when our stories intersect through a common theme—such as what every parent desires for their child’s school experience—doors are opened for collaboration and change. That’s why I believe educators need to hear the voices of parents of children with disabilities who attend their schools. They need to be reminded that all parents desire to see their children valued, included and progressing toward optimal academic and life goals.

    So, how do “stories” relate to inclusion? Sociologist, Sara Green, who is also the mother of a daughter with cerebral palsy, reminds us that “stigma” does not exist within a person. Rather, it exists in the space “between” people. Inclusion exists within that “space,” too. Sharing stories can help us decide how we want to live within that space. And therein, says Green, lies hope. Hope that through mutual understanding of what inclusion really means (found in the stories we share), we can create school communities in which all children and all families—in which your lovely daughter and your family—are welcomed and valued. To this end, this blog is committed.

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