I have followed David Goode’s work since the mid 1970s. In particular I identify with his struggle and persistence in publishing unusual research. Like him I collected data on a set of experiences (in my case, a village in the Netherlands inhabited solely by people with disabilities) deemed so esoteric that it would have little relevance beyond its geographical confines. Like him I saw the material published in a book over a decade later. And like him (after many formal rejections) I found editors at Temple University Press who recognized that such a manuscript occupied a special niche and deserved...

When I first read these lines by Isac Dinesen, I thought first of all the children and adults I have known who were born deaf-blind, did not develop any fonnal language, and are without any words to tell their own stories. This is a book about these people. I then thought of “ethnomethodology” because I am a practicing “ethnomethodologist,” a fonn of sociology specifically concerned with the description and describability of the world and with the relation between text and worldly events. It should be of no surprise to the reader, then, that in a book about persons who use...

Between 1973 and 1976 I conducted participant-observation research on a state hospital ward for children born deaf-blind who were diagnosed as profoundly mentally retarded and who had failed to develop any formal language. Many of these children were born with rubella syndrome, a viral embryopathy that causes some of the most severe disabilities we have ever seen in children. They were some of the most complex and interesting children I have ever been privileged to have met.

In doing this research I had no specific a priori theoretical or methodological issues; rather, these concerns emerged during the course of the...

After completing the study of Christina at the state hospital described in the previous chapter, I undertook a comparative observational project involving a child with rubella syndrome living with her natural family (Goode 1980a, 1985). I hoped that this research would both remedy the almost total lack of natural observational data about families with such children and allow me to compare the role of family and state hospital in the development of a child with rubella syndrome—that is, compare observations of Christina to those of a similarly affected child who had never lived in a state institution.

In Chapter...

One variant of thought about human language proposes that shared formal symbolic language is the distinguishing feature of human beings and of being human. In fact, although the idea is of ancient origin, today the notion that without language human beings are less than human is a common theme in the writings of many academic disciplines and professions. Sociology is no more or less guilty of this mistaken idea than such disciplines as psychology, linguistics, or neurology. In sociology, so entrenched is this notion that it is found in introductory textbooks as an obvious—and, I would add, completely unexamined...

On the first day of an undergraduate course on sociological theory, the ethnomethodologist Harold Garfinkel handed to students an assignment titled “The Phone Exercise: A Demonstration of How Sociology Operates on Everyday Life.”¹ Students were asked to obtain a cassette tape recorder and record the following examples of ringing phones: three cases of a phone ringing summoning you; three cases of a phone ringing summoning someone else; and three cases of a phone ringing for you, but as a simulation.² As with many initial assignments in ethnomethodology, and bearing out Garfinkel’s many remarks about the utter sensibility of everyday action,...

This chapter is a reflection upon a recurrent theme in the social sciences—the relations between children and adults. Adult—child relations are investigated under a tremendous number of names in social science today. Terms like “language acquisition,” “moral development,” “socialization,” “the sociology of the family,” and “the sociology of children” are commonly found in social science textbooks and research. These conceptualizations and the work associated with them, I argue below, represent usually very adult concerns about children and to a large degree may lead us away from understanding children qua children, or, better—as I explain below—kids qua...

This chapter does not summarize the book’s content but rather explains, in general terms, what happened to the children and families I studied in the years since the original research, and briefly discusses implications of this work for some current issues of the disabilities field, such as “inclusion,” “quality of life,” and “facilitated communication.” Implications for disability research more generally are also presented.

The disabilities field itself has undergone tremendous changes from the mid-1970s to the early 1990s, probably more so than almost any other human services sector. These changes, fueled by increasing political expressions of people with disabilities and...