Critical Issues in the Lives of Children and Youth Who Are Deafblind

By Nelson, Catherine; Bruce, Susan M. | American Annals of the Deaf, Fall 2016 | Go to article overview

Critical Issues in the Lives of Children and Youth Who Are Deafblind


Nelson, Catherine, Bruce, Susan M., American Annals of the Deaf


The prototypical image of deafblindness is that of Helen Keller at the water pump signing "water" with her teacher, Anne Sullivan. Depicted in numerous books, plays, and movies, this moment is both poignant and powerful, as we see the young girl connect with the symbolic world of language. Although the story of Helen Keller continues to inspire, the history of deafblindness and deafblind education extends beyond the life of Helen Keller and includes a very heterogeneous population with widely different stories to tell.

At first blush, it would seem easy to define deafblindness, but in reality, its definition has never been as straightforward as the lack of vision and hearing. In fact, most individuals who are deafblind have and make use of at least some vision and/or hearing (Schalock, 2015; R. van Dijk, Nelson, Postma, & J. van Dijk, 2010). Moreover, deafblindness cannot be defined by simply adding deafness to blindness. Salvatore Lagati first advocated dropping the hyphen between deaf and blind in 1995, arguing that the concurrent losses of vision and hearing constitute a unique disability. In 2004, after much debate and lobbying from the deafblind com- munity, the European Parliament declared that "deafblindness is a distinct disability that is a combination of both sight and hearing impairments, which results in difficulties having access to information, communication, and mobility."

The principal special education law at the federal level in the United States, the Individuals With Disabilities Education Act, includes the following definition of deafblindness:

Deaf-blindness means concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness. (34 CFR 300.8 (c)(2))

Regardless of the definition used, the population of persons who are deafblind is highly heterogeneous, and the effects of the deafblindness vary from person to person. For example, there is a wide difference between the effects of congenital deafblindness and late acquisition of deafblindness because individuals with late-acquisition deafblindness will have likely already developed language and have an understanding of a vast array of concepts gained through the senses of vision and hearing. The effect of deafblindness cannot be understood by adding up the effects of the visual impairment and the hearing loss. This is because vision and hearing are the two distance senses people rely on most as they learn. When other disabilities such as motor impairments are added to deafblindness, the effect is multiplicative because vision and hearing interact with all of the body's systems (R. van Dijk et al., 2010). Although their characteristics are varied, individuals who are deafblind also have commonalities, including difficulties with receptive and expressive communication and, because of limited access to sensory information, difficulty gathering and bringing together usable information from which to understand the world (Bruce & Borders, 2015).

Despite the broad range of characteristics of the deafblind population, the number of scholars and practitioners in the field of deafblind education is small, with a rather limited recorded history. However, the historical legacy of deafblindness provides much rich information, as distinct shifts have occurred in the composition of the population of individuals who are deafblind, and in the growth and evolution of knowledge and thinking about critical issues in the lives of children and youth who are deafblind.

Historical Perspectives

Although the Quran contains metaphorical references to deafblindness, for the most part the concept of deafblindness is absent in early historical texts (Enerstvedt, 1996). In the 18th century there began to be discussion of how individuals who were both deaf and blind might be taught to communicate. …

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