We should react to deaf parents who choose to have a deaf child with compassion not condemnationThere has been a great deal of discussion during the past few years of the potential biotechnology offers to us to choose to have only perfect babies, and of the implications that might have, for instance for the disabled. What few people foresaw is that these same technologies could be deliberately used to ensure that children would be born with disabilities. That this is a (...) real possibility, and not merely the thought experiment of a philosopher, is brought home to us by the decision of an American lesbian couple to select a deaf sperm donor in order to maximise the chances that their children, Jehanne and Gauvin, would be deaf like them.1 Their choice has sparked controversy, not only among medical ethicists, but in the opinion pages of newspapers across the world. Ought parents be permitted to make such choices?If the parents of Jehanne and Gauvin have done anything wrong, it must consist in violating their child’s right to an open future—limiting its future potential for choice.2 But what does it mean to respect this right?From the moment a child is born, her parents are making choices for her, which will powerfully shape her future. They will decide what kind of education she will have, what religious experiences, from among what group she can select friends. Thereby, they profoundly mould the person she will be and the life she will have.When this activity is carried out within certain, ill-defined, limits, it is in no way objectionable. It is not merely a …. (shrink)

These words were written by ethicist Jonathan Glover in his paper “Future People, Disability and Screening” in 1992. Whereas screening and choosing for a disability remained a theoretical possibility 16 years ago, it has now become reality. In 2006, Susannah Baruch and colleagues at John Hopkins University published a survey of 190 American preimplantation genetic diagnosis (PGD) clinics, and found that 3% reported having the intentional use of PGD “to select an embryo for the presence of a disability.” Even before, (...) in 2002, a controversy was generated by the case of Candace A. McCullough and Sharon M. Duchesneau, a lesbian and deaf couple from Maryland who set out to have a deaf child (then, Gauvin) by intentionally soliciting a deaf sperm donor. (shrink)

Communities of Deaf people consider themselves a minority with its own language, Sign Language, and culture. Two basic characteristics of Deaf Culture, its orientation on community and the awareness of an own Deaf worldview different from hearing people's worldview, are often not recognized by Christian Churches. This article tries to find a theological answer on this dramatic situation, formulating a theological foundation of the legitimacy of Deaf people's experience of God's presence in the Deaf community, and the thesis that God's (...) presence can take place even in a very secular environment. The legitimacy of the experience of God's presence in the community is supported by statements of exegetes, Fathers of the Church, spiritual theologians, and Church historians about Jesus' presence amongst two or three. This presence needs of a new Pneumatic religious culture, which is based on the quality of relationship. (shrink)

Photographs and interviews document the history of deaf culture in the United States.

The cochlear implant controversy involves questions about the nature of disability and the definition of “normal” bodies; it also raises arguments about the nature and significance of culture and the rights of minority cultures. I defend the claim that there might be such a thing as “Deaf culture” and then examine how two different understandings of the role of culture in the lives of individuals can lead to different conclusions about the rights of Deaf parents in relation to their children, (...) and about the ethics of public funding for research on cochlear implants. An argument asserting the rights of minority cultures to equal respect and consideration within a multicultural society, informed by communitarian political philosophy, offers the best prospect for the defence of the unique culture(s) of the Deaf. (shrink)

It has been argued by some authors that our reaction to deaf parents who choose deafness for their children ought to be compassion, not condemnation. Although I agree with the reasoning proposed I suggest that this practice could be regarded as unethical. In this article, I shall use the term “dysgenic” as a culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling condition by (...) the majority of the social matrix; in short as a handicap. As in eugenics, dysgenics can be achieved in a positive and a negative way. Positive dysgenics intends to increase the overall number of people with a particular genetic trait. Marriage between deaf people or conceiving deaf children through reproductive technology are examples of positive dysgenics. Negative dysgenics can be obtained through careful prenatal or pre-implantation selection and abortion (or discarding) of normal embryos and foetuses. Only deaf children would be allowed to live. If dysgenics is seen as a programmed genetic intervention that undesirably shapes the human condition – like deliberately creating deaf or dwarf people – the professionals involved in reproductive technologies should answer the question if this should be an accepted ethical practice because the basic human right to an open future is violated. (shrink)

In 'Benefit, Disability and the Non-Identity Problem', Hallvard Lillehammer uses the case of a couple who chose to have deaf children to argue against the view that impartial perspectives can provide an exhaustive account of the rightness and wrongness of particular reproductive choices. His conclusion is that the traditional approach to the non-identity problem leads to erroneous conclusions about the morality of creating disabled children. This paper will show that Lillehammer underestimates the power of impartial perspectives and exaggerates the ethical (...) force of partial perspectives, which in turn commits him to providing weak justifications for the choice made by the couple in his example case. (shrink)

The Deaf culture in the United States is a unique culture that is not widely understood. To members of the Deaf community in the United States, deafness is not viewed as a disease or pathology to be treated or cured; instead it is seen as a difference in human experience. Members of this community do not hide their deafness; instead they take great pride in their Deaf identity. The Deaf culture in the United States is very communitarian not (...) individualistic. Mary Beth and Dominic are a married couple in their late 20s who are genetically deaf. They are active members in the Deaf community and work as advocates for individuals who are deaf, family members of Deaf people and sign language interpreters who identify with the Deaf culture. Mary Beth and Dominic approach the fertility clinic with a request that they only want a child with the genetic gene for deafness. They would want the embryos that do not have the gene to be destroyed. This would entail creating a child who would have the gene for deafness. Medically and ethically, should the fertility clinic agree to the couple’s request? The authors argue that the couple's request should be denied and provide reasons for it from the perspectives of foundational and clinical ethics. (shrink)

The use of cochlear implants, especially for prelingually deafened children, has aroused heated debate. Members and proponents of Deaf culture vigorously oppose implants both as a seriously invasive treatment of dubious efficacy and as a threat to Deaf culture. Some find these arguments persuasive; others do not. And in this context arise questions about the extent to which individuals with disabilities may decline treatments to ameliorate disabling conditions. When they do so, to what extent may they call upon society to (...) provide supportive services and accommodations? (shrink)

If Solomon is correct in labeling businesses as community citizens because they “are part and parcel of the communities in which they live and flourish, and the responsibilities that they bear are ... intrinsic to their very existence as social entities,” then it follows that other community citizens have reciprocal duties toward them that they, as community citizens, have to any other community citizen. One of these duties is not to harm needlessly another community citizen without its permission. One issue (...) affecting business is genetically engineering children to have characteristics, e.g., deafness, which render them disabled in work environments. Since business is a very large part of society, citizen responsibilities toward it in regard to intentionally creating deaf children should be examined. It is my contention that designing disabled offspring is unethical on the grounds that it causes undue injury to businesses without their permission in any form. (shrink)

We describe a patient LS, profoundly deaf in both ears from birth, with underdeveloped superior temporal gyri. Without hearing aids, LS displays no ability to detect sounds below a fixed threshold of 60 dBs, which classifies him as clinically deaf. Under these no-hearing-aid conditions, when presented with a forced-choice paradigm in which he is asked to consciously respond, he is unable to make above-chance judgments about the presence or location of sounds. However, he is able to make above-chance judgments about (...) the content of sounds presented to him under forced-choice conditions. We demonstrated that LS has faint sensations from auditory stimuli, but questionable awareness of auditory content. LS thus has a form of type-2 deaf hearing with respect to auditory content. As in the case of a subject with acquired deafness and deaf hearing reported on a previous occasion, LS’s condition of deaf hearing is akin in some respects to type-2 blindsight. As for the case of type 2 blindsight the case indicates that a form of conscious hearing can arise in the absence of a fully developed auditory cortex. (shrink)

New-born screening programs for congenital disorders and chronic disease are expanding worldwide and children “at risk” are identified by nationwide tracking systems at the earliest possible stage. These practices are never neutral and raise important social and ethical questions. An emergent concern is that a reflexive professionalism should interrogate the ever earlier interference in children’s lives. The Flemish community of Belgium was among the first to generalize the screening for hearing loss in young children and is an interesting case to (...) study the public justification of early interventions for families with deaf children. This article uses a critical lens to study the archive of the government child healthcare organization in Flanders in order to uncover underlying constructions of childhood, deafness, and preventive health. We focus on two interrelated themes. The first is the notion of exclusion of the human factor through the mediation of technology. The second is the idea of deafness as endangering a healthy development, an impairment that can nevertheless be treated if detected early enough. It is argued that, since deafness cannot be viewed as a life-threatening condition, the public interest which is implicitly defended is not the rescue of deaf children rather the exclusion of otherness. (shrink)

These words were written by ethicist Jonathan Glover in his paper “Future People, Disability and Screening” in 1992. Whereas screening and choosing for a disability remained a theoretical possibility 16 years ago, it has now become reality. In 2006, Susannah Baruch and colleagues at John Hopkins University published a survey of 190 American preimplantation genetic diagnosis clinics, and found that 3% reported having the intentional use of PGD “to select an embryo for the presence of a disability.” Even before, in (...) 2002, a controversy was generated by the case of Candace A. McCullough and Sharon M. Duchesneau, a lesbian and deaf couple from Maryland who set out to have a deaf child by intentionally soliciting a deaf sperm donor. (shrink)

The book represents a historical overview of the way the topic of gesture and sign language has been treated in the 18th century French philosophy. The texts treated are grouped into several categories based on the view they present of deafness and gesture. While some of those texts obviously view deafness and sign language in negative terms, i.e. as deficiency, others present deafness essentially as difference, i.e. as a set of competences that might provide some insights into (...) how spoken language works. One of the arguments of the book is that these two views of deafness and sign language still represent two dominant paradigms present in the current debates on the issue. The aim of the book, therefore, is not only to provide a historical overview but to trace what might be called a "history of the present". (shrink)

Title III of the Americans with Disabilities Act (ADA) grants people with disabilities access to public accommodations, including the offices of medical providers, equal to that enjoyed by persons without disabilities. The Department of Justice (DOJ) has unequivocally declared that the law requires effective communication between the medical provider and the Deaf patient. Because most medical providers are not fluent in sign language, the DOJ has recognized that effective communication calls for the use of appropriate auxiliary aids, including sign language (...) interpreters. The final decision on what to offer the Deaf patient is the doctor's, and under current DOJ regulations, the doctor does not have to consult with the patient or give "primary consideration" to the patient's choice of auxiliary aid as long as what the doctor offers results in effective communication. However, given the great variation in people's communication styles and skills, a standard, one-size-fits-all auxiliary aid would fail to achieve effective communication in many cases, harming not only that Deaf patient, but also the medical provider, who would be potentially liable for violating the ADA as well as hamstrung in getting accurate information for purposes of diagnosis and treatment. Moreover, most doctors are not savvy about Deafness and Deaf culture. Thus, the best way to ensure effective communication would be to require the medical provider to ask the Deaf patient for his or her choice of auxiliary aid and to give "primary consideration" to the patient's expressed choice of auxiliary aid. Such an approach is required under Title II of the ADA, which makes it mandatory for state and local governments to consult with people with disabilities and give "primary consideration" to the patient's choice of auxiliary aid. Given that there is no difference between a public doctor and a private doctor that would justify the two different approaches and that cost is not a factor, since under either title, a medical provider cannot pass on the costs to the person with a disability, the DOJ should revise its interpretation of Title III in order to bring in into line with its interpretation of Title II. To fail to do so would operate to frustrate both the letter and the spirit of the ADA. Until the DOJ brings the titles into line, the courts should decline to give controlling weight to the DOJ's interpretation of Title III. (shrink)

A groundbreaking study of deafness, by a philosopher who combines the scientific erudition of Oliver Sacks with the historical flair of Simon Schama. There is nothing more personal than the human voice, traditionally considered the expression of the innermost self. But what of those who have no voice of their own and cannot hear the voices of others? In this tour de force of historical narrative, Jonathan Ree tells the astonishing story of the deaf, from the sixteenth century to (...) the present. Ree explores the great debates about deafness between those who believed the deaf should be made to speak and those who advocated non-oral communication. He traces the botched attempts to make language visible, through such exotic methods as picture writing, manual spellings, and vocal photography. And he charts the tortuous progress and final recognition of sign systems as natural languages in their own right. I See a Voice escorts us on a vast and eventful intellectual journey,taking in voice machines and musical scales, shorthand and phonetics, Egyptian hieroglyphs, talking parrots, and silent films. A fascinating tale of goodwill subverted by bad science, I See a Voice is as learned and informative as it is delightful to read. (shrink)

New-born screening programs for congenital disorders and chronic disease are expanding worldwide and children “at risk” are identified by nationwide tracking systems at the earliest possible stage. These practices are never neutral and raise important social and ethical questions. An emergent concern is that a reflexive professionalism should interrogate the ever earlier interference in children’s lives. The Flemish community of Belgium was among the first to generalize the screening for hearing loss in young children and is an interesting case to (...) study the public justification of early interventions for families with deaf children. This article uses a critical lens to study the archive of the government child healthcare organization in Flanders in order to uncover underlying constructions of childhood, deafness, and preventive health. We focus on two interrelated themes. The first is the notion of exclusion of the human factor through the mediation of technology. The second is the idea of deafness as endangering a healthy development, an impairment that can nevertheless be treated if detected early enough. It is argued that, since deafness cannot be viewed as a life-threatening condition, the public interest which is implicitly defended is not the rescue of deaf children rather the exclusion of otherness. (shrink)

This article contends that close attention to music/language analogies allows us to perceive how language attempts to gain an understanding of its own cognitive nature. The article does so by closely reading Paul de Man's ‘The Rhetoric of Blindness’, an essay in which de Man suggests that a detailed look at the analogies between musical and linguistic structures made by Jean-Jacques Rousseau in his Essay On the Origin of Languages helps reveal how literary criticism becomes ‘blind’ to its own metaphysical (...) presuppositions. Scrutinizing the terms on which de Man engages Rousseau, the article argues that surface inconsistencies in de Man's use of musical concepts reveal a deeper pattern of ‘deafness’ which turns his notion of ‘empty’ subjectivity against itself. It concludes with some suggestions for how we might further develop the study of music/language analogies, a subject that has the potential to invigorate our understanding of the non-conceptual aspects of linguistic meaning. (shrink)

Congenital deafness is one of the most common birth defects reported. Approximately 70% of congenital deafness is non-syndromic, and approximately 80% of non-syndromic hearing loss results from a genetic cause. Middleton et al.’s1998 study highlighted the negative attitudes of culturally Deaf individuals towards genetic testing for genes known to cause hearing loss. While studies concerning genetic testing for deafness genes reference Middleton’s study, to our knowledge a re-evaluation of the attitudes of Deaf individuals towards genetic testing has (...) not been conducted recently. The purpose of this study is to re-establish attitudes of Deaf individuals towards genetic testing of genes known to cause hearing loss. A computer-based questionnaire was distributed to members of the Deaf community. Responses of participants were recorded and analyzed. The primary investigator then attended Deaf community events and the 2015 Alabama Association of the Deaf Conference, and recruited individuals interested in participating in the study. The surveys were distributed to these individuals and their anonymous responses were analyzed. Our results show there are more positive attitudes within the Deaf community towards genetic counseling, genetic testing, and prenatal testing of genes known to cause hearing loss than were previously documented, although negative attitudes are still present. Additionally, our study shows there is a desire among members of the Deaf community to learn more about and potentially receive these services, despite the fact they are rarely offered by healthcare providers. (shrink)

European Portuguese (EP) is a language with variable stress, and the main cues for stress are duration and vowel reduction. Previous behavioral study has reported a stress “deafness” effect in EP when vowel quality cues are unavailable. The present study recorded both event-related potentials (ERPs) and behavioral data to examine the stress processing by native EP speakers in the absence of the vowel quality cues. Our behavioral result was consistent with previous research, showing that when vowel reduction is absent (...) EP speakers demonstrated a stress “deafness” effect similar to that found in speakers of languages with fixed stress or without any lexical stress marking. In the ERP task, both the trochaic and iambic conditions yielded mismatch negativity (MMN) and late negativity, suggesting that EP speakers are able to discriminate the two stress patterns without vowel reduction at the pre-attentive stage. Moreover, the ERP and behavioral data revealed compatible results regarding the pattern of stress bias in EP. In the EPR task, the MMN and late negativity components were more negative and span over a larger temporal window in the iambic condition than in the trochaic condition, indicating a higher sensitivity for the iambic stress pattern. In the behavioral task, EP speakers responded more accurately and more quickly to the iambic stress. These results match recent developmental findings in the acquisition of stress, but speak against the dominant view in EP phonological literature which assumes penultimate stress to be the regular stress pattern. In addition, both the ERP and the behavioral data showed that EP speakers’ stress processing was influenced by their working memory (WM) capacity. The participants with high WM capacity outperformed the participants with limited WM capacity in the iambic condition. In sum, our results broaden the current knowledge on stress processing by EP speakers at both the pre-attentive and attentive levels. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:How Deafness May Emerge as a Disability as Social Interactions UnfoldGabrielle HodgeMy hearing loss ranges from moderate to profound in both ears. I use spoken English, written English and Auslan (Australian sign language) to communicate, and rely heavily on two hearing aids, speach reading skills and my vision to interact with other people. Here I demonstrate how my deafness tends to emerge as a disability through interactions (...) with other people within the health and wellbeing context of group yoga practice. I compare two experiences from practicing yoga in group classes (which involves physical interaction and requires attendance to non–spoken tasks), and use these experiences to explore what the label ‘disability’ does not capture, how this term reflects my lived experience of deafness, and what this might mean for health and wellbeing [End Page 193] professionals engaging with clients who experience types of deafness.All human interactions are uniquely and intersubjectively shaped by the actors, how they communicate, and what they are doing while interacting. In my case, if someone is simultaneously attending to some task while talking with me, this may mean that I cannot see their face and therefore cannot access their spoken utterances. During group conversations, others may overlap their spoken turns at a pace faster than I can visually track and therefore I cannot access the dynamic content of the group conversation. In these situations, my deafness may manifest as disability. This contrasts with interactions where I engage with other signers using Auslan, where my deafness does not manifest as disability at all. For me, deafness as disability tends to be an emergent characteristic of my interactions with other people, rather than a constant feature of all interactions, or all moments of a single interaction. It emerges most prominently through interactions with strangers, and less during interactions with social intimates. This characterisation contradicts the concept of disability as a fixed feature of an individual that impacts uniformly on all aspects of their experience.I regularly practice yoga and have done so for many years. I enjoy participating in classes with other students, as we jointly learn and develop practices that challenge and illuminate different aspects of our lives. “At the heart of all yogas lies the manipulation of visible, accessible means to reach invisible, intangible ends” (Givón 2005, p. 23). How one manipulates their visible, accessible means depends on one’s personal physiology, psychology and sociality. Over the years I have developed various strategies that enable me to participate in group practice and engage with other students and teachers without over–reliance on teachers or mediation from Auslan interpreters. I have mostly come to depend on observing how the teacher and other participants move (or even how shadows on the wall infer that they move) and interpreting their movements in context of the group practice.For example, by placing myself at the front or the middle of the class, I can observe the movements of others from several viewpoints in order to synchronise my own with theirs as the practice unfolds. Through experience, I can distinguish when these movements are intentional and when they may be accidental. By combining these strategies with one–on–one discussions with teachers before or after class, as well as doing my own research, I can subsequently learn about teachings that may be verbally expressed during classes and later match these with various teachers and practices over time. These strategies enable me to adapt to a situation where it is impossible to experience consistent face–to–face interaction and where it is difficult to access spoken instruction.Group yoga classes usually begin with the teacher sharing some comments or a story to prompt the theme of the class. This helps us to integrate our exploration of action with the exploration of “invisible and intangible” goals. As a class, we observe our teacher’s intentional movements and mirror these both mentally and physically. As the class progresses, the teacher migrates around the class observing and attending to individual students with adjustments and other assistance. Throughout the class, the teacher alternates between observing, demonstrating and assisting, while simultaneously instructing the class verbally.Most of the students in these group classes... (shrink)

Should parents try to give their children the best lives possible? Yes. Do parents have an obligation to give their children the widest possible set of opportunities in the future? No. Understanding how both of these things can be true will allow us to go a long way towards understanding why a Deaf couple might wish their child to be born Deaf and why we might have reason to respect this desire.

This essay assesses the degree to which the deaf were regarded as a disabled population in medical, religious, and legal thought during the Renaissance, chronologically identified with the period between approximately 1500 and 1650. The primary geographic focus rests on the German-speaking lands of central Europe. Analysis shows that the idea of deafness as a disability here was composite one, making connections between inability to hear and intellectual impairment, moral deficiency, and disease. This contrasts with recent findings elsewhere in (...) Europe, where intellectuals were more focused on sign languages as a means of integrating the deaf into hearing society. (shrink)