Disability Studies Quarterly
Summer 2005, Volume 25, No. 3
<www.dsq-sds.org>
Copyright 2005 by the Society
for Disability Studies


Technologies, Deafness, and Critical Compromise

Marilys Guillemin
Centre for the Study of Health and Society
School of Population Health
University of Melbourne
Victoria, Australia 3010
E-mail: m.guillemin@unimelb.edu.au

Lynn Gillam
Centre for the Study of Health and Society
School of Population Health
University of Melbourne
Victoria, Australia 3010

Alison Brookes
Centre for the Study of Health and Society
School of Population Health
University of Melbourne
Victoria, Australia 3010

Abstract

The original aim in this research was to explore the responses of people who identify as Deaf, deaf, or hearing impaired to genetic testing for deafness. Nineteen in-depth interviews were undertaken with Deaf and deaf/hearing impaired people from South East Australia. Analysis showed that there appeared to be a relative acceptance of genetic testing, and a general opposition to cochlear implants. However, further consideration of these responses suggested that there was neither outright rejection or complete acceptance, but rather, a critical engagement and pragmatic reconciliation with these technologies, which we characterize as critical compromise. Critical compromise is a useful concept in understanding how people understand and interact with technologies and the effects of these practices and interactions.

Keywords: Australian Deaf community, genetic testing for deafness, cochlear implants, critical compromise

Introduction

The range of current technologies associated with deafness is impressive. Technologies range from the ubiquitous mobile phone text messaging used extensively by deaf people, to the more controversial cochlear implants, and more recently, genetic testing for deafness. Science and technology studies remind us that these technologies are not value-neutral devices but are imbued with social, cultural and historical meanings. (See the now classic science and technology studies of Bijker & Law, 1992; Callon, Law, & Rip, 1986; Law, 1991; Pickering, 1992; and Wajcman, 1991). As Bijker & Law (1992) claim, technologies are not purely technological, nor is the social purely social. These science studies scholars bring to our attention the reciprocal relationships of the social with the technological. In this paper we explore the complex meanings of two technologies associated with deafness, first, genetic testing for deafness, and second, cochlear implants, as they were expressed by participants whom we interviewed in a qualitative study.

Informed by the science and technology studies literature, we entered into the field of deafness research suitably sensitized to the value-ladenness of technologies. Our specific aim was to explore the responses of people who identify as Deaf, deaf and hard of hearing, together with Deaf, deaf and hearing parents of deaf children, to the newly emerging technology of genetic testing for deafness. With the possibilities of genetic testing being used to both select for and against a fetus carrying a genetic disposition towards deafness, and the increasingly routine use of prenatal genetic testing, it was timely to seek contribution to the wider debates from those people with insight into the effects of genetic testing on their communities and the challenges that testing might provide to Deaf/deaf and hard of hearing individuals. Given our reading of the literature on disability rights, critiques of pre-natal genetic testing, Deaf culture, and our discussions with key stakeholders when designing the research, we were expecting to find some strongly negative responses to the idea of genetic testing for deafness, particularly pre-natal testing. We were therefore surprised when conducting the research by the general lack of opposition to this technology, in contrast to the strength of conviction in the way many participants, completely unprompted, discussed cochlear implants. This unexpected finding is the focus of this paper. The unprompted and sometimes fervent discussions of cochlear implants, alongside the much more cautious and reticent concerns expressed about genetic testing, forced us to consider the entanglement of the social, historical, and cultural factors that might explain the responses to these two technologies.

We argue that the participants' responses to the two technologies can best be understood by reference to the concept of "critical compromise." The notion of "critical compromise" was proposed by Daly, Guillemin, and Hill (2001) in their examination of a number of different health technologies. Critical compromise was proposed as a conceptual tool to make sense of our interactions with technologies, to understand how technologies shape the way we live, but also to understand that how the way we live shapes the development and uptake of technologies. More importantly it offers us a way of examining how we can critically engage and manage our interactions with technologies without resorting to either total acceptance or rejection of the technology. Technologies clearly have provided us with many benefits, but at the same time, they come with risks and potential harms. Critical compromise offered a way of going beyond just weighing up the benefits and harms, but rather engaging in vigorous and critical analysis about how we interact with technologies.

However, we suggest that the different characteristics of the responses to the two technologies can best be understood by extending the original notion of critical compromise. Rather than considering critical compromise as a one-dimensional linear scale where after critical deliberation individuals reach a point of compromise positioned somewhere between acceptance and rejection of the technology, we propose a more complex concept that allows for different kinds of critical compromise that may take into account individual and societal considerations simultaneously. Using this more complex idea of critical compromise, we postulate that the responses to the two technologies in question represent different types of compromises, based on different competing values or worldviews, formed in different socio-political and historical contexts. Working on the assumption that critical compromise is an on-going process, rather than a fixed position, we suggest that our participants' responses to genetic testing and cochlear implants encompass the socio-political and historical factors within which both these technologies are entangled.

We begin this paper with a brief description of the possibilities of genetic testing for deafness. Referring to the disability and bioethics literature on pre-natal genetic testing, we show the initial plausibility of our expectations that Deaf people might be strongly opposed to genetic testing for deafness. Having established this background, we then discuss, firstly, participants' reactions to the prospect of genetic testing, followed by their views on cochlear implants. We examine the negotiations, compromises and entanglements that constitute their critical engagement with these two technologies, noting in particular where these seem to differ from each other. In extending the original concept of critical compromise to analyse the participants' responses, we offer a novel approach that can be used to make sense of our socio-technological interactions.

Genetic testing for deafness and disability rights

A number of genes responsible for common forms of inherited deafness have been identified over the last few years, the most well known of these being connexin 26 (Chang, Camp, & Smith, 2003; Friedman et al., 2003; Kelsell et al., 1997). With the identification of these genes has come the possibility of carrying out genetic testing for deafness (Arnos, 2002, 2003). Genetic testing can occur in a number of different contexts. Diagnostic genetic testing for deaf children or adults is currently available, which can provide an explanation for existing deafness. Screening of newborns is also possible and could be implemented by using the heel-prick blood sample that is already routinely taken in many western countries to screen for other, life-threatening genetic conditions. Genetic testing can also be done prenatally, using a sample of placental tissue or amniotic fluid, both of which contain fetal cells. Pre-natal testing can show definitively if the fetus has the mutation; a gene-positive result means that the resulting child will be deaf, although the severity of the condition may not be known (Arnos, 2003). The availability of pre-natal testing for deafness raises the possibility of termination of a pregnancy. Perhaps the most likely circumstance is that of hearing parents, who already know that they are carriers, or who perhaps, already have one deaf child, deciding to have pre-natal testing with a view to terminating a pregnancy if the fetus has the deafness mutation. It is also speculated that Deaf parents may choose to terminate a hearing fetus, if their preferred outcome is a Deaf child. In 2001 Middleton, Hewison, and Mueller presented findings of a survey of the opinions of Deaf, deaf and hard of hearing people that suggests that some participants (most of whom were Deaf) would consider termination of pregnancy if the fetus were found to be hearing following pre-natal testing.

There are a number of interrelated reasons for the supposition that Deaf people would be likely to find genetic testing for deafness, especially pre-natal testing, highly problematic. One major source is the disability rights critique of pre-natal testing. A number of disability advocates and academics charge that pre-natal testing with a view to termination of "affected" pregnancies is a technology that oppresses and devalues people with disabilities (Asch, 1999; Newell, 1999; Saxton, 1997). This opposition to pre-natal testing is partly based on a rejection of the medical model of disability, which sees disability as an inherent feature of an individual, a personal deficit or abnormality. In contrast, the social model of disability sees disability as a product of the social environment (or perhaps, the interaction between the individual and the social environment), which creates disability by imposing barriers to the activities of people with disabilities. Pre-natal testing clearly operates on the basis of the medical model; that is, the way to avoid having a child with a disability is to avoid having the child, rather than change the social environment (Lippman, 1999).

Since the early 1990s, there has been some discussion in the academic literature of the problematic relationship the Deaf community has with increased genetic technology associated with deafness. For example, Jordan (1991) suggest that "[s]ome deaf couples would prefer to have deaf children and seek genetic counselling with that in mind" (p. 237, emphasis in original). Jordan further identifies the "difficult ethical dilemma" that would be faced when prenatal genetic diagnosis of deafness is available (p. 238). Similarly, a report in 1991 to the U.S. National Institutes of Health suggested that "research in genetics to improve deaf people's quality of life is certainly important... but must not become, in the hands of hearing people, research on ways of reducing the deaf minority" (Lane, 1995, p. 178). Primed by this literature, we therefore anticipated strong opposition to genetic testing for deafness from our participants.

Study methodology

The study aimed to explore the views of people who are themselves Deaf, deaf or hard of hearing about scientific efforts to identify and test for genes for deafness. We recruited participants from deafness organizations whose membership differed, including those whose members identified primarily as culturally Deaf, those who were hard of hearing who had usually acquired hearing loss later in life, and parents in learning and support groups whose children were deaf or hard of hearing. Participants included both Deaf, deaf and hearing parents of deaf and hearing children. From these initial participants, a process of snowball recruitment was employed, with a total of 19 participants enlisted. Participants were recruited from various urban and regional areas of South East Australia.

The participants took part in in-depth individual interviews. The interviews were conducted using a number of modes of communication depending on the needs and preferences of the participant; this included oral communication and use of sign language interpreters. Participants who used sign language interpreters were given the opportunity to nominate a preferred interpreter; all interpreters were accredited with the Victorian Deaf Society's interpreting service. One participant, due to distance and time, also responded to questions by e-mail, with questions posed, answered and clarifications sought between the researcher and participant. Two participants were interviewed by telephone (again for reasons of distance): one hard of hearing participant using acoustic amplification and one deaf participant whose spouse translated for him. The interviewers are all hearing persons; none of whom are fluent in Auslan. The interview questions focused principally on genetic testing, with additional questions on self-identity and personal experiences of being Deaf, deaf or hard of hearing; the interviews did not specifically include any questions on cochlear implants. Interviews were transcribed and analyzed thematically, informed by a grounded theory methodology. The data were analyzed for common patterns and further abstracted into themes. Ethics approval for this project was granted by the University of Melbourne Human Research Ethics Committee.

The 19 participants ranged in age from 18 to 65, with 11 men and 8 women. Most were married or partnered and 9 of the 19 had children, a small number of whom were themselves deaf or hard of hearing. Five of the 19 participants self-identified as belonging to the Deaf community, and all five used Auslan (Australian Sign Language) as their primary mode of communication. Most participants could communicate orally; 11 of the 19 used hearing aids and one participant had a cochlear implant.

Responses to genetic testing for deafness

The detailed findings of the study with regard to genetic testing and deafness have been discussed elsewhere (Guillemin and Gillam, 2005). In brief, these findings showed that with the exception of three participants, all participants were generally supportive of the use of genetic testing for deafness, in particular newborn screening. Although there was less support for pre-natal testing for deafness, participants generally accepted pre-natal testing for deafness being available for those who wished to use it, even if they would not use it themselves. However, this brief summary is deceiving in that it presumes a clear-cut position on the part of the participants with regard to genetic testing for deafness; it does not provide any insight into their process of deliberation and critical engagement. Examining the process of engagement of the participants in more detail shows the participants appeared to be actively grappling with the possibility of this relatively new technology, its implications and possible consequences, rather than simply enunciating a view.

Participants tended to first identify factors that seemed to them likely to be beneficial about genetic testing for deafness. The possible benefits which they could see included early and definitive diagnosis rather than the long and often stressful process of multiple diagnostic hearing tests; the provision of information to enable parents to plan and prepare themselves to have a deaf child, and to prepare for schooling and language needs of the child; the opportunity for early intervention, including medical intervention and the use of hearing aids; the provision of explanations for those with a family history of deafness; and, the potential to assist in research and development investigating the causes and possible cures for deafness. These sorts of benefits were identified by the full range of participants, including those who were Deaf. However, the Deaf participants were generally less interested in the idea of a "cure" and more interested in the opportunity for parents to plan and prepare themselves for the possibility of a deaf child.

Most participants also expressed concerns about genetic testing for deafness, in particular pre-natal testing, which could lead to termination of pregnancy for deafness. Those participants who expressed concern about pre-natal testing did so either because of the views regarding abortion more generally, or specifically because of possible termination of a deaf fetus and the implied lack of worth of a deaf child. These findings are consistent with recent research conducted on parental attitudes toward genetic testing for paediatric deafness (Brunger et al., 2000; Martinez, Linden, Schimmenti, & Palmer, 2003; Middleton et al., 2001).

Although the number of participants in this study was small, there was no obvious difference between the views expressed and how the participants identified, that is, whether they identified as belonging to the Deaf culture, or as hard of hearing or deaf. However, those participants who identified as Deaf were more likely to discuss the lack of social acceptance of deaf people in the community and the lack of resources and available support for deaf people. In particular, there was concern expressed regarding the lack of information made available to parents who find that they have given birth to a deaf child.

In analyzing the participants' responses, what became apparent was a particular type of critical engagement with the issues around pre-natal testing for deafness. Many of the participants were personally "disturbed," to use one participant's term, at the idea of terminating for deafness. They felt termination of pregnancy for deafness was unnecessary or showed a very impoverished or misguided understanding of what life for a deaf person could be. As one participant said, "Why deafness? — it's not fatal." However, despite these concerns, participants strongly advocated individual choice, with many supporting women's rights to abortion. The critical engagement here is between their personal strong and positive views of deafness and the consequences of terminating a pregnancy for deafness, and their equally strong societal view that women should be free to make their own decisions about termination of pregnancy. In the end, they concluded that women's right to choose should prevail. However, this was not unconditional; there was a common stipulation that prospective parents contemplating pre-natal testing for deafness should be provided with relevant and extensive information about deafness and deaf people, and should not make decisions in ignorance. The critical engagement here focused on trying to resolve the tension between their personal views against termination of pregnancy for deafness, and their awareness that other people may well decide in favour of terminating for this reason. This is critical compromise based on considerations of the individual and the societal rights of others, rather than a deliberation of only individual factors.

Evan's comments were illustrative of this kind of critical compromise. Evan is an active member of the Deaf community, participating at the level of policy and advocacy, as well as maintaining a key organizational role. He is the only Deaf member of a hearing family and has a hearing partner and hearing child.

In terms of abortion (for deafness)— I would never have thought it would go that far but you never know. I feel very strongly about women's rights. I feel very strongly they have a choice but it takes two to tango, two people are involved. It goes back to the issue of making sure they've been given all the information up front before they make that decision. Based on my experience from meeting parents who have found out they have a deaf child, to meet someone like myself who can do all of these things...I think they will think again. But if in the end they would decide to do it, it would be a shock to me — who's been talking to you, where have you been getting this negative information from? I would want to explore more of their cultural background...where are they coming from before they decided to make that step. I think such an issue when a woman wants ...to abort based on deafness alone — it's not a life threatening factor — that needs to be, not barred, but there needs to be very, very strong grounds to do it, otherwise it would be wise for medical people to say there is no reason to do that, it's not necessary. But then again it's a woman's choice. I can't stop that. Put a situation today, if a woman said I've just found out my baby is deaf there is the option to abort. Then her first question will be ... do you really think there is nothing else for that child to be successful. If you feel that way and you feel you've got all the information...it's your decision but...Being a person I'd say you're crazy. I don't want to interfere with the rights of a person but I think there are no medical grounds for that sort of thing to happen.

Evan's quote provided us with some insights into his critical engagement with the issues. Evan deliberated over his personal views on deafness based on his worldview as a Deaf person. Evan was someone who identified with the Deaf community and was acutely aware of the politics of Deaf culture. He was someone who had experienced both personal difficulties and successes associated with his deafness. However, his deliberations are not limited to just individual considerations. Issues such as women's rights to abortion, informed choice, cultural background, exposure to information about deafness and the Deaf community are all factored in his deliberations. In his engagement with the issues, Evan reached a point of critical compromise, a position that took into account his own personal experience and worldview as well as broader societal considerations. Evan's deliberations were indicative of the critical engagement of many participants with the social and the technological with regard to pre-natal testing for deafness. Similarly, this critical engagement characterized participants' comments about cochlear implants.

Cochlear implants

The historical accounts of cochlear implants are well-documented. These histories of cochlear implants serve as an excellent example of Law's claim of the technological being integrally entwined with the social. Working within science and technology studies, Blume (1999) and Hogan (1998) provide us with rich and complex historical accounts of cochlear implants. They contrast the historical depictions of the cochlear implant as a modern medical breakthrough, with those that present the cochlear implant as a "technology of oppression" that devalues the rich culture of the Deaf.

In addition to the historical accounts that outline the development of the cochlear implant, there is a considerable literature that discusses the consequences and effects of cochlear implants. Opposition to cochlear implants has been framed around a number of key points. These are first, that cochlear implants offer, at best, only modest hearing gains; second, that the technology is associated with invasive procedures with considerable risks, especially during the process of implantation. For example, during cochlear implantation the receiver-stimulator must be implanted in the skull requiring surgery. Young children are at increased risk during surgical implantation due to their skulls being thinner and less dense that those of adults (Balkany, 1993; Russell, Coffin, & Kenna, 1999). Third, cochlear implantation is permanent and that once implantation has occurred, "normal" hearing, however minimal, can never be regained, and finally, and some would argue more significantly, is the cultural and symbolic threat to Deaf culture (Cherney, 1999; Crouch, 1997; Lane, 1992). The characterization of cochlear implants as a remedy to "fix" deafness (Skelton & Valentine, 2003), providing a way to ameliorate both the physical and social challenges associated, at least in the hearing community, with being deaf has placed it firmly outside the framework which views Deafness as a distinct, vibrant cultural identity. Thus, cochlear implants become a means by which the perceived social costs of deafness can be eased by the readiness of individuals to undertake to remedy the physical condition of being deaf.

This has produced a "trenchant resistance to using such technologies as cochlear implants," the "technology [representing] an 'artificial' invader of the body and a disruption of the subculture of the Deaf community, forced upon people who do not want it by advocates who continue to represent deafness as problematic and 'abnormal'" (Lupton & Seymour, 2000, p. 1853). Goggin & Newell (2003) use the case of cochlear implants to argue that disability is produced through technologies. Echoing the science and technology studies literature, Goggin and Newell show how technologies such as cochlear implants, can through their design and implementation, work to disable large groups of people.

Cochlear implants have a cultural meaning over and beyond their technical potentials and limitations. Implantation of prelingually deaf children is particularly contentious. The concern is that prelingually deaf children who have cochlear implants will not have the opportunity to be exposed to sign language and the sense of belonging to a Deaf community. Once implanted, considerable commitment is required for oral speech and language therapy, and this leaves very little room (philosophically or practically) for additional education in sign language (Russell et al., 1999). As Crouch (1997) notes, "the use of cochlear implants in prelingually deaf children may be conceived of as an intervention that can determine community membership" (italics in original) (p. 15).

The value of language to a cultural group (both symbolic and communicative), coupled with ready descriptions of the Deaf community as being a linguistic minority is highlighted in the literature. (See for example, Johnston, 2004; Lane, 1992, 1995; and Senghas & Monaghan,2002). The concerns regarding cochlear implants and implications for community membership expressed by the participants reflect the concerns of genetic screening where membership (both actual and potential) of the Deaf community may be decreased as a result of their wide employment. Johnston (2004) notes the increasing numbers of severely and profoundly deaf children receiving cochlear implants in Australia and explains that "... current habilitation practices with young children with cochlear implants [make it] unlikely that many of the implanted children will be exposed to Auslan or any form of sign language in their early years or later in childhood" (p. 368). Johnston (2004) adds that cochlear implants alone "may have already effectively ended the growth of the Deaf community in any meaningful sense" (p. 370). The pivotal role of sign language in identifying and holding together the Deaf community, and its concomitant importance on self-identity lend weight to Sparrow's (2004) claim that even if the functional deficiencies of cochlear implants were resolved, the cultural opposition would remain.

As discussed previously, the participants in this research had understood that the focus of this study was on genetic testing and deafness. They were not directly asked about cochlear implants. Despite this, the highly politically charged context of cochlear implantation is such that 9 of the 19 participants, unprompted, offered their views about cochlear implantation. Predominant amongst these statements, were deeply held concerns about the lack of opportunity for parents to make truly informed choices about cochlear implantation in prelingually deaf children. In addition to these concerns were claims regarding the functional deficiencies of cochlear implants. The issues raised by the participants echoed those raised in the literature.

As with pre-natal testing for deafness, critical engagement with the cochlear implant occurred both in terms of individual and societal dimensions. A critical engagement in the personal dimension is well illustrated by Brian's comments. Due to his hearing loss, Brian had experienced considerable isolation and social difficulties when he was growing up. He had decided as an adult to have a cochlear implant. Brian commented on the social effects of cochlear implants.

Well, practically, (the cochlear implant) it's a technical device, ...but for someone who has the implant that's not what it's about. It's about the effect that has on their life and how they use their life. So it's a technical device with social implications.

Brian's claims emphasized the cochlear implant as a socio-technical device; embedded within the technology are social and cultural implications and consequences. Brian spoke at length about his improved social relationships following his cochlear implantation, and the ways he was now able to interact with people.

In contrast to Brian, Nina's engagement with cochlear implant technology is laden with tension and ambivalence. Nina has a congenital condition resulting in profound hearing loss; she wears hearing aids and identifies as deaf. She regretted being outside the Deaf community but felt she understood and shared many of their values. Nina discussed her deliberations about cochlear implantation. She claimed that if she were to have a deaf child and was considering cochlear implantation, she would insist on the child also learning sign language.

If I had a child that was profoundly deaf and knowing I only had this small window to make the decision about the cochlear implant, I don't know what I would do. I really would perhaps be really hesitant about it. I'm not giving good hearing (with a cochlear implant), I'm giving very much basic sound. I've seen kids at the kindergarten and they develop signing like that. Now I don't know if this in fact suppresses the cognitive development from the point of being able to read, to later develop a grammatical understanding with English as a second language, I don't have enough information. But if I had a deaf child, I would insist on bi-lingualism. I would not have a deaf child who didn't sign if I was in a parenting situation. I have seen too many kids trying to mainstream in ordinary education system who are miserable.

Nina did not reject the possibility of cochlear implantation; rather she deliberated the possibilities, finally settling with the possible adoption of cochlear implants but insisting on both oral and sign language communication in an attempt to gain the benefits of both approaches. It is worth noting that this sort of compromise is not possible in relation to pre-natal testing and termination of pregnancy, where the choice is much more stark and irrevocable.

Informed choice

In the participants' incorporation of societal considerations in their critical engagement, there are some similarities with what was said about pre-natal testing for deafness, but also some important differences. Barry identified as part of the Deaf community and communicated primarily using Auslan. In discussing the necessity for parents to be fully informed if they were to undergo pre-natal testing for deafness, Barry extended his claim for informed choice to parents of deaf children.

Now I would rather see the doctor or whoever in the hospital explain everything, from A to Z about deafness, cochlear implants, hearing aids, absolutely everything. Not just give limited information. Then people could, the parents, can actually make an informed choice about what they would really like to do with that child. Now that is not what happens. Most doctors will say O.K. you've got to go and have a cochlear implant as soon as possible with that child, and do cochlear implants work 100%? No. So if the doctor sees that a baby is deaf they automatically just assume that they need to get a cochlear implant straight away. They don't say, oh O.K. the baby is deaf, now these are your options, you can have a hearing aid, a cochlear implant. These are your options for education, these are your options for communication, and give them a whole package of information, so the parents can actually make an informed decision. The parents can ask questions of the doctor and get good information, so the parents actually can make a decision themselves that's informed, not have the doctor make the decision for them and say, your child needs a cochlear implant, because the doctor isn't a God.

Quentin is also Deaf and shared Brian's view about the responsibility of the medical profession about fully informing parents of deaf children about all their options.

Doctors, you know, can be quite forceful and tell people what to do, saying you know you must do this, you must do that, and I don't think that is right. You know when you're talking about the cochlear implant, doctors force people to do it but they (the cochlear implants) actually often fail and even though they fail, still people are encouraged to have them. When you look in the newspaper they talk about the fantastic things and all the successes that they have, but they never mention any of the failings or any of the side effects that happen, they only talk about the positives. There are so many parents, hearing parents, that do have deaf children and the doctors give them so much information about the cochlear implant, they really need to have more of a Deaf perspective, a more positive Deaf perspective on what their options are.

As with pre-natal testing for deafness, these participants framed their responses around informed choice as a way of negotiating a critical compromise. These participants were insistent on full provision of information to parents of deaf children about what it would mean to be deaf/Deaf with and without cochlear implantation, so that they were able to make a considered decision. What is interesting here is the participants' entanglement of the technological and the social. They are concerned about the medical and technological side effects of the cochlear implant, but more than that, they are concerned about the lack of "Deaf perspective" in the process of decision-making. They want parents to be informed about the potential benefits of belonging to a Deaf culture, of sign language and of experiencing a rich and successful life as a deaf/Deaf person. In coming to a position of critical compromise, these participants are not opposing cochlear implants per se, but moreover are advocating for full provision of information about the social and the medical consequences and effects of the technology.

Barry's comment indicated a stepping up of the tension inherent in this critical compromise. His view was that it was acceptable for adults to make their own choice about having an implant, but implants should not be done at all on children. Barry limited the realm of free choice that he is prepared to tolerate — parents' choices for their prelingually deaf children were excluded.

Later on, if they want to have a cochlear implant they can make that decision. They might decide at 18, no, I don't want to and then get it at 30 or something. But I know people now who are deaf who had the cochlear implant at 13 and then they get to 18 and I'll see them again and say, oh where's your cochlear implant? And they'll say, oh I take it off because I have headaches from it and I just don't like it, it's awful. So could you imagine it on a young baby, getting an implant? No, it shouldn't happen. When they are 18 they can have the implant, and then they can decide if they like it or not.

This type of compromise is interesting in comparison to a similar position expressed in relation to genetic testing. The right of prospective parents to terminate a pregnancy for whatever reason was accepted without question, but here Barry is prepared to place limits on parents' rights to make medical decisions for their children.

Conclusion

Although the empirical research on which this paper is based was conducted in South East Australia, it appears that this position of critical compromise is not just a localized response. This process of critical engagement is also apparent within the international Deaf community, with key organizations negotiating between condemnation and opposition to cochlear implants to a level of acceptance. The United States National Association of the Deaf (NAD) position is illustrative of this shift. In the early to mid-1990s NAD characterized cochlear implants as glorified hearing aids requiring invasive surgery (Russell et al., 1999). NAD objected to the U.S. Food and Drug Administration's (FDA) approval of implants for children, while NAD leaders described the process of implantation as child abuse and genocidal (Balkany, Hodges, & Goodman, 1995). In its 1991 statement, NAD described the FDA's decision to approve pediatric use of implants as "unsound scientifically, procedurally, and ethically" and described parents deciding on implants for their children as "poorly informed about the deaf community, its rich heritage and promising futures..." (Christiansen & Leigh, 2004, p. 676). In contrast, the 2000 NAD statement is a much more measured response towards cochlear implants (Cochlear Implant Committee, 2000). This position statement considers both the benefits of cochlear implants as well as the problems associated with its implementation. The position statement is primarily concerned with cochlear implants in prelingually deaf children, and recommends professional training of all health professionals involved in counseling parents of deaf children in social, educational, cultural and communication aspects of deafness, including the wellness model of deafness. Christiansen and Leigh assert that the 2000 NAD statement identifies implants as a "tool to be used in some forms of communication, and not a cure for deafness" and "[NAD] recognizes the rights of parents to make informed choices for their... children, respects their choice to use cochlear implants and all other assistive devices..." (Christiansen & Leigh, 2004, p. 676). We suggest that the NAD position statement on cochlear implants is in keeping with our notion of critical compromise. The 2000 position statement does not completely reject cochlear implants but rather, it offers a critical response to this technology, assisting those involved to make a considered decision.

What has influenced this critical engagement with technologies such as genetic testing for deafness and cochlear implants? We argue that in industrialized nations technologies are now embedded in our everyday lives. As Winner (1986) states, technologies are "forms of life." Winner, together with fellow science and technology studies scholars, urge us to consider how technologies shape both knowledge and practice. Technologies such as cochlear implants and genetic testing for deafness force us to consider how we understand deafness, to consider our personal worldviews, as well as the social, cultural, and historical factors in which these technologies are embedded.

In our everyday engagement with technologies we are forced to make a multitude of decisions involving our levels and types of engagement with various technologies. Bijker and Law (1992) claim that "Technologies always embody compromise" (p. 3). This notion of compromise becomes part of our critical engagement. We suggest that this critical engagement with more ubiquitous technologies has extended to devices such as cochlear implants and newer forms of genetic testing for deafness. Haraway (1994) recommends that in these complex (cyborg) times, domination-centered analyses are no longer useful. She urges us to critically engage with the socio-technological and argues that it is at these points of articulation where employment of technologies in ways which complement and shape individuals' and communities' political and social ideals is possible. We suggest that technologies such as genetic testing and cochlear implants have become part of the assemblage of technologies available for deaf people. Analyzing the responses of Deaf and deaf/hard of hearing people about cochlear implants and genetic testing for deafness we found that there is neither total acceptance nor outright rejection of these technologies. There is a complex process of critical analysis and compromise that is not uni-dimensional but incorporates individual and societal considerations. Although people may choose not to use these technologies the very existence of these technologies will nonetheless shape the way deafness is understood and experienced. The complexity of potential and actual engagement with genetic testing is lost when dichotomous positive or negative categories are assigned. Rather, engagement with testing (both acceptance of and opposition to) is more fruitfully understood within the individual and community frameworks of values, attitudes, and expectations within which testing is offered. Critical compromise provides both critique and ways of engaging with the technologies that frame all our lives.

Acknowledgements

We are indebted to the participants in this research for their interest and participating with us so willingly. We also wish to thank the many stakeholder informants who guided us in the early stages of this research. Thanks also to Deborah Zion who was involved in the early phase of the research. This research was funded through a small Australian Research Council grant.

References

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Endnotes

i Pseudonyms are used for all participants to maintain participants' privacy.

ii Brian chose to refer to his deafness as a "hearing loss," which had developed in early infancy. Although Brian had some social contact with the Deaf community, he did not identify with being Deaf.

iii The Chair of the U.S. National Association of the Deaf Cochlear Implant Committee who developed this position statement, Phil Aiello, is a member of the Deaf community and had a cochlear implant inserted as an adult. He has written about the response of the Deaf community to his cochlear implantation (Aiello, 2001). We are very grateful to Beth Haller for pointing us to these references.