Quest for a Deaf Child: Ethics and Genetics

This project investigates the question of whether it is morally justifiable to use genetic technology in order to bear a deaf child. Even though it may seem counterintuitive to hearing people, deaf people often desire to have deaf children. Reasons for this vary, but often include a deep longing to have a child who can fully participate in ones linguistic and cultural community. Many view using genetic technology to ensure or create a child with a disability as harmful and a dereliction of parental duty; dismissing the desire for a deaf child as misguided at best. I begin by situating this desire for a deaf child in historical context, identifying and analyzing ethical claims regarding deaf education, eugenics, civil rights, and cochlear implant surgery. Following this, three arguments are analyzed to consider whether, in certain situations, it may be morally justifiable to use genetic technology to bear deaf children. The first is a consequentialist approach to genetic selection, using a variation of the Non-Identity argument to evaluate the potential harms and benefits to the child who is born deaf. For genetic alteration, I evaluate an argument with roots in deontology that considers the notion of bodily integrity as a principle of human dignity and autonomy, expanding it to include genomic integrity. The final chapter considers the question of deafness as a moral harm, including the question of harm within the family unit and harm to society. I consider two major objections to these arguments: the child\u27s right to an open future, and conditions of exit. In the right to an open future argument, parents have a duty to ensure that undue restrictions are not placed on the child\u27s future. The conditions of exit argument asserts that parents have a duty to protect a child\u27s potential future interest in exiting her cultural community. I conclude that these objections rightfully present challenges to the three arguments I consider, but are currently insufficient to fully overcome them and need further refinement

Introducing _The Journal of Philosophy of Disability_

This is the introduction to the inaugural issue of The Journal of Philosophy of Disability

Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both distributive and recognitive justice. The disability rights movement\u27s demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision-making related to their interests, including in crisis planning before, during, and after a pandemic like Covid-19

Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision-making related to their interests, including in crisis planning before, during, and after a pandemic like Covid-19

MetaMeta Upload: Composing a Review in ASL and English

No abstract availabl

Listening to the Lyricals: A Partial Discovery

No abstract availabl

Syllabus: Beyond Quality of Life: Exploring Disability and Bioethics

The syllabus for "Beyond Quality of Life: Exploring Disability and Bioethics" was designed for the Master of Bioethics program at the University of Pennsylvania. This first course on disability for the program conducted an inquiry into bioethical responses to human variations that become categorized as disability. The interdisciplinary project of disability studies provided a fresh theoretical and practical lens through which to view bioethics, its philosophical framework, and the library of cases concerning disability that are argued within that frame

Coming out of the hard of hearing closet: Reflections on a shared journey in academia

Deaf academics who navigate aspects of their professional lives through signed language interpreting services face a range of issues, including handling perceptions of their Hearing peers, identifying and negotiating their own communication preferences, and balancing personal and professional relationships with their interpreters. Interpreters bring individual sets of schemas and skills to their work, which impacts the interpreted interaction. In this paper, a Deaf academic and her interpreter/colleague discuss various challenges in having an interpreter—and being an interpreter—in academia. Topics include being “outed” as a person with a disability because of the presence of an interpreter; the need for interpreters with specialized academic vocabulary; the responsibilities of the Deaf academic and the interpreter in interpreted interactions; and the sense of vulnerability, intimacy, and autonomy experienced by the Deaf academic and the interpreter. The article is a shared reflection about the evolution of a relationship, beginning with the authors’ respective roles as client and interpreter, and leading into to their present alliance as colleagues and friends.Key words: interpretation, Deaf, academic, ethics, disability, autonomy, vulnerability, intimacy, philosophy, hard of hearing, hearing impaired, sign language, oral interpreting, American Sign Language