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)
This paper demonstrates that accounting for the moral harm of selecting for deafness is not as simple or obvious as the widespread negative response from the hearing community would suggest. The central questions addressed by the paper are whether our moral disquiet with regard to selecting for deafness can be adequately defended, and if so, what this might entail. The paper considers several different strategies for accounting for the supposed moral harm of selecting for deafness and concludes (...) that the deaf case cannot be treated in isolation. Accounting for the moral harm of selecting for deafness necessarily entails moral implications for other cases of procreation and procreative decision-making, including unassisted coital reproduction. The lesson to be learned from the deaf case is that we need norms that govern not just the use of reproductive technology, but procreation and procreative decision-making in all of its various forms. (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)
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)
The concept of selecting for a disability, and deafness in particular, has triggered a controversial and sometimes acrimonious debate between key stakeholders. Previous studies have concentrated on the views of the deaf and hard of hearing, health professionals and ethicists towards reproductive selection for deafness. This study, however, is the first of its kind examining the views of hearing children of deaf adults towards preimplantation genetic diagnosis and prenatal diagnosis to select for or against deafness. Hearing children (...) of deaf adults (or CODAs, as they call themselves, and are widely known in the deaf community) straddle both the deaf and hearing worlds, and this dual perspective makes them ideally placed to add to the academic discourse concerning the use of genetic selection for or against deafness. The study incorporated two complementary stages, using initial, semistructured interviews with key informants (CODAs and health professionals) as a means to guide the subsequent development of an electronic survey, completed anonymously by 66 individuals. The participants shared many of the same views as deaf individuals in the D/deaf (or “culturally deaf”) community. The similarities extended to their opinions regarding deafness not being a disability (45.5% believed deafness was a distinct culture rather than a disability), their ambivalence towards having hearing or deaf children (72.3% indicated no preference) and their general disapproval of the use of genetic technologies to select either for or against deafness (60% believed that reproductive technologies, when used to select for or against deafness, should not be available to the community). (shrink)
A preimplantation genetic test to discriminate between severe and mild autism spectrum disorder might be developed in the foreseeable future. Recently, the philosophers Julian Savulescu and Guy Kahane claimed that there are strong reasons for prospective parents to make use of such a test to prevent the birth of children who are disposed to autism or Asperger’s disorder. In this paper we will criticize this claim. We will discuss the morality of selection for mild autism in embryo selection in a (...) hypothetical in vitro fertilization (IVF) situation where preimplantation genetic diagnosis is performed and compare this with a similar selection for congenital deafness. To do this we first discuss relevant human differences. We then introduce the principle of human capabilities (PC) and compare this principle with the principle of procreative beneficence (PB) introduced by Savulescu and Kahane. We apply the two principles to selection for mild autism and selection for congenital deafness. We argue that PC allows for the selection for mild autism but rules out selection for congenital deafness. PB will not give clear answers; the ruling of PB depends to a large extent on expected social, cultural and political developments. We will argue that PC is preferable to PB. We will discuss arguments for the value of mild autism for individuals who have this condition and argue that they are able to lead a life with human dignity provided autism-friendly social circumstances are present. Neither PC nor PB yields strong reasons for prospective parents to seek to prevent the birth of children who are disposed to mild autism spectrum disorder. (shrink)
Pulvermüller's Hebbian model implies that an impairment in the word form system will affect phonological articulation and phonological comprehension, because there is only a single representation. Clinical evidence from patients with word-form deafness demonstrates a dissociation between input and output phonologies. These data suggest that auditory comprehension and articulatory production depend on discrete phonological representations localized in different cortical networks.
This essay examines constructions of deafness in medieval culture, exploring how deaf experience disrupts authoritative discourses in three textual genres: medical treatise, literary fiction, and autobiographical writing. Medical manuals often present deafness as a physical defect, yet they also suggest how social conditions for deaf people can be transformed in lieu of treatment protocols. Fictional narratives tend to associate deafness with sin or social stigma, but they can also imagine deaf experience with a remarkable degree of sympathy (...) and nuance. Autobiographical writing by deaf authors most vividly challenges diagnostic models of disability, exploring generative forms of perception that deafness can foster. In tracing the disruptive force that deaf experience exerts on perceived notions of textual authority, this essay reveals how medieval culture critiqued the diagnostic power of medical practitioners. Deafness does not simply function as a symptom of an individual problem or a metaphor for a spiritual or social condition; rather, deafness is a transformative capacity affording new modes of knowing self and other. (shrink)
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 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)
O'Regan & Noë (O&N) argue that there is no need of internal, more or less picture-like, representation of the visual world in the brain. They propose a new approach in which vision is a mode of exploration of the world that is mediated by knowledge of sensorimotor contingencies. Data obtained in “change blindness” experiments support this assumption.