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Volume Ten: Issue Two

Winter 2010

Special Issue: Science, Technologies and Deafness
Ernst D. Thoutenhoofd, Contributing Editor

Science, Technologies and Deafness: An Introduction to Organized Knowledge as Social Problem
Ernst D. Thoutenhoofd

Abstract

Whose Deaf Genes Are They Anyway? The Deaf Community’s Challenge to Legislation on Embryo Selection
Steven D. Emery, Anna Middleton, and Graham H. Turner

Abstract

Views, Knowledge, and Beliefs about Genetics and Genetic Counseling among Deaf People
Anna Middleton, Steven D. Emery, and Graham H. Turner

Abstract

Technology as a Learning Tool for ASL Literacy
Kristin Snoddon

Abstract

Acting with Attainment Technologies in Deaf Education: Reinventing Monitoring as an Intervention Collaboratory
Ernst D. Thoutenhoofd

Abstract

The Use of Modern Information and Communication Systems and Technology and Experienced Stress at Work in Mixed Deaf-Hearing Teams
Gardy van Gils, Beppie van den Bogaerde, and Rob de Lange

Abstract

Medical Signbank: Bringing Deaf People and Linguists Together in the Process of Language Development
Trevor Johnston and Jemina Napier

Abstract

What Does ‘Informed Consent’ Mean in the Internet Age? Publishing Sign Language Corpora as Open Content
Onno Crasborn

Abstract

ABSTRACTS
Science, Technologies and Deafness: An Introduction to Organized Knowledge as Social Problem

The introduction to this volume connects the burgeoning academic field of science and technology studies (STS) with studies into the technologies of deafness; examples of such technologies include genomics, cochlear implantation, sign language corpora, educational tracking systems, and mobile communications. The subsequent articles all bear witness to the extensive interweaving of advanced technologies, scientific knowledge, deafness and sign language. The papers brought together in this special issue were presented at two prominent international conferences: the annual meeting called “Ways of Knowing” held by the Society for Social Studies of Science (4S), in Montreal from October 11–13, 2007; and the annual meeting called “Acting with Science, Technology and Medicine,” held jointly by 4S and the European Association for the Study of Science and Technology (EASST) in Rotterdam from August 20–23, 2008.

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Whose Deaf Genes Are They Anyway? The Deaf Community’s Challenge to Legislation on Embryo Selection

This article centers on the implications of genetic developments (as a scientific and technological discipline) for those Deaf people who identify as a cultural and linguistic minority group and are concerned with the preservation and development of sign language and Deaf culture. We explore the impact of one particular legislative initiative that is liable to directly affect the reproductive liberty of Deaf people in the UK. In particular, we document the challenge that was instigated by the international Deaf community toward this clause. Before outlining the item of legislation that renewed debate on this topic in the UK, we briefly review the current availability of genetic technologies pertaining to deafness. We then summarize the nature of the opposition to this initiative and describe the steps taken to campaign against it and discuss the prospects such legislation raises for Deaf people. We conclude by reviewing the outcome in terms of the landscape that remains following this matter.

In brief, our context is as follows. The United Kingdom’s Human Fertilisation and Embryology Act (2008) contains a clause in it that (as originally written) sought to prevent people from choosing to keep certain embryos—including those with characteristics pertaining to deafness—when using assisted reproduction techniques. Within the UK Deaf community, this clause not only fueled ongoing fears that this technology was ultimately aimed at preventing the birth of deaf people but also raised an alarm that politicians could—openly and largely without challenge—revive the implication that deaf people are generally unwanted. Our article therefore looks at how genetic technologies have been seen to pose a severe risk to the future of the Deaf community and how the Deaf public and its allies have attempted to generate and participate in public debate on the issue.

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Views, Knowledge, and Beliefs about Genetics and Genetic Counseling among Deaf People

Genetic counseling is part of the social response to the science of genetics. It is intended to help twenty-first-century societies manage the consequences of our ability to observe and intervene in our genetic makeup. This article explores the views, knowledge, and beliefs of some Deaf and hard of hearing people about genetics and genetic counseling. Deaf adults are often interested in knowing why they are deaf and whether deafness can be passed on to their children. They may also be interested in knowing about other traits in their family (e.g., inherited cancer). These issues are routinely addressed within the health service of genetic counseling as offered by clinical geneticists and genetic counselors. However, in the United Kingdom, very few Deaf and hard of hearing adults either seek out a referral for genetic counseling or utilize this clinical service.

There are many complex reasons for this, within this article we focus on what deaf people think genetic counseling is and how they feel about new discoveries in genetics. The data have been gathered via a structured questionnaire completed by 573 Deaf and hard of hearing people, with additional information gathered via the free-text comments provided in the questionnaires. A Deaf researcher also completed thirty interviews with Deaf participants in British Sign Language. The participants in the study sample were recruited from the readership of two magazines for Deaf and hard of hearing people in the UK.

Our results show that 50 percent of the participants indicated they knew what genetic counseling was before they read the questionnaire, but 80 percent did not know how to get such counseling. We conclude that, in order for Deaf and hard of hearing people to make an informed choice about whether they wish to access genetic counseling services, they need to internalize accurate information about what services are available to them. This article shows that the benefits of genetic technologies are by no means unquestioned in our societies.

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Technology as a Learning Tool for ASL Literacy

This article discusses the role of technology in supporting ASL literacy. This attention to technology is part of an exploratory study of Deaf elementary school students participating in an ASL identity text project at a bilingual/bicultural school for Deaf students in Ontario, Canada. This study is a contribution to the cross-Canada Multiliteracies project, which proposes a new approach to literacy pedagogy that also includes an increased attention to technological applications. The Ontario ASL curriculum and its use of ASL technology are also elements of this exploratory study.

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Acting with Attainment Technologies in Deaf Education: Reinventing Monitoring as an Intervention Collaboratory

In this article I consider that attainment research is a knowledge-producing practice that co-creates the realities it studies. Studies aimed at monitoring pupils’ educational progress tend to collect those data that are needed to develop research claims, thereby producing an expert catalogue of understanding that is variable and has limited potential for integrating with educational practice. I propose that monitoring could alternatively be reinvented as an interventionist collaboratory, one that engages new technologies for the purpose of merging understanding with doing. Central to that effort should be a broad conception of (e-)literacy as a key social and cultural competence.

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The Use of Modern Information and Communication Systems and Technology and Experienced Stress at Work in Mixed Deaf-Hearing Teams

In this article we look at the use of ICST in two multilingual and deaf/hearing teams in an educational and research environment. We describe how job demands and job control (decision authority level) contribute to feelings of stress among the deaf and the hearing employees. We find that most information is received by all of the team members in writtten Dutch, as well as through the intranet and e-mail, but deaf employees predominantly rely on each other for informal information. Most of the employees feel that they are in control at work and that they fulfill the job demands. A multiple-regression analysis shows that experienced stress is lower as people have more control over their work and as they use Dutch as their first language at work. Experienced stress clearly increases with an experienced increase in job demands. When other factors are kept constant, deafness as such does not contribute to stress.

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Medical Signbank: Bringing Deaf People and Linguists Together in the Process of Language Development

In this article we describe an Australian project in which linguists, signed language interpreters, medical and health care professionals, and members of the Deaf community use the technology of the Internet to facilitate cooperative language development. A web-based, interactive multimedia lexicon, an encyclopedic dictionary, and a database of Australian Sign Language (Auslan) are being used to create an effective, accepted, and shared sign language vocabulary for the discussion of medical and mental health issues by deaf clients and health professionals in interactions mediated by Auslan interpreters. The site, called Medical Signbank, is a means of monitoring Auslan vocabulary use and innovation by interpreters and of providing an explanation of basic medical and mental health terminology to deaf people with limited English or literacy skills. Medical Signbank will use the interactive capabilities of the Internet to turn the tables on language planning and standardization—from “top down” to “bottom up”—and, by so doing, encourage an organic and more natural process of language development.

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What Does ‘Informed Consent’ Mean in the Internet Age? Publishing Sign Language Corpora as Open Content

Recent technologies in the area of video and Internet are allowing the creation and online publication of large signed language corpora. Primarily addressing the needs of linguists and other researchers, because of their unique character in history these data collections are also made accessible online for a general audience. This “open access” publication may benefit the language communities from which the recordings stem, yet they also raise some ethical concerns. In particular, informed consent is hard to obtain if, due to future technological developments, the consequences of online publication cannot be foreseen. While this problem cannot be resolved, in this article I propose that the benefits of open access publication outweigh the possible objections. The first-time availability of large-scale language resources to not only researchers but also members of the deaf communities that are involved opens up a new era for sign language studies, and has a potential political effect that should not be underestimated.

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