Chapter 6: Responsible for Normal: The Contradictory Work of Families

Each of us interacts with institutions every day; as a result, we find ourselves filling out forms, making phone calls, sending emails, and going to offices and websites where we share information about ourselves and our families. Imagine what you would know or think about yourself if you took only the information that you share in these processes and read it in a report. Would it reflect who you are? Would it create an accurate picture? And what if you added up the work you have done in the service of institutions over the course of your life. How many hours would it be? How much emotional energy would you have contributed? This chapter examines the institutional process, power, and everyday practice as families engage with early childhood education and care institutions when they have a child with a disability. We use the term institutions because we are interested not only in schooling, but also in organizations that have the express purpose of enhancing child development and learning through a set of cultural, procedural, and legal processes. Our understanding of institutions includes not just schools, but also early intervention programs, child care, family support programs, and other organizations. Through an empirical study of families’ institutional interactions when they have a young child with a disability, this chapter examines the work that families do to support the agenda of school systems.