Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics—and the specific role it can or should play—remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three (...) methodological steps according to which the meaning of ethics concepts can be refined based on experience and empirical research: function identification, function enrichment, and function testing. These steps are explained and situated within the broader commitment of pragmatic ethics to a perspective of moral growth and human flourishing. We hope that this proposal will give specific direction to the bridging of theoretical and empirical research in ethics and thus support stronger actualization of ethics concepts. (shrink)

Media reflect and affect social understandings, beliefs, and values on many topics, including the lives of autistic and disabled people. Media analysis has garnered attention in the field of disability studies, which some scholars and activists consider a promising approach to discussing the experiences of – and for promoting social justice for – autistic people, who remain underrepresented on scripted television. Additionally, existing portrayals often rely on stereotyped representations of disabled individuals as objects of pity, objects of inspiration, or villains. (...) Television may also serve as a primary source of public knowledge about disabled people and the concept of disability. It is therefore essential that such portrayals avoid stigma and stereotyping. We take a disability studies lens to critically analyze and compare representations of diverse people, who may sometimes be conflated in the popular imaginary, across television series about autistic characters, those with cerebral palsy, and a character with fetal alcohol spectrum disorder. We employ an intersectional analytic framework to problematize representations of autistic and disabled people, using television, feminist, and critical disability studies literatures. We analyze how the formal structure of television storytelling can either enable or disable its characters, as well as how portrayals of disability that display a sensitivity to concerns raised by critical disability discourse do not necessarily display the same sensitivity when they intersect with marginalized experiences of gender, sexuality, race, and class. (shrink)

The term diagnostic odyssey refers to patients' difficult journeys to obtain a diagnosis, particular in the case of rare or contested illnesses. This paper describes the diagnostic odyssey of patients with New Daily Persistent Headache (NDPH), a rare headache disorder notable for its persistence, resistance to treatment, and impact on quality of life. Studies conducted to date have taken a medical perspective focusing on characterizing NDPH as opposed to patient construction of the illness experience. This study fills that gap by (...) analyzing 17 semi-structured interviews with participants with NDPH, using the McGill Illness Narrative Interview (MINI). Their narratives detail significant moments of headache onset and when they realized that their condition was called NDPH. Thematic analysis identified themes including relief and devastation upon receiving a diagnosis, the importance of headache as singular, negative and positive experiences with providers, the impact of online support group, choosing friends with complex medical conditions, the cyclical nature of treatment, and maintaining hope. Participants utilized social media and social networks to navigate their illness experiences. Numerous participants also reported negative experiences with providers, which created opportunities for reinforcing identity through social networks, and cyclical interactions when medicalization of their condition was necessary for access to treatments and services. This paper advances narrative bioethics scholarship on diagnostic odysseys by arguing that social networks and cyclical engagement with medical systems support patient autonomy in terms of decision-making around uncertain treatments. It concludes with implications for physician-patient relationships that create epistemic justice for all patients, including patients with NDPH. (shrink)

While the term and concept of neurodiversity emerged within autistic communities, it has never been limited to autism. As Knopes reviews, neurodiversity scholars have identified meaningful overlaps...

Many services can assist autistic people, such as early intervention, vocational services, or support groups. Scholars and activists debate whether such services should be autism-specific or more general/inclusive/mainstream. This debate rests on not only clinical reasoning, but also ethical and social reasoning about values and practicalities of diversity and inclusion. This paper presents qualitative results from a mixed-methods study. An online survey asked autistic adults and parents of autistic people of any age in Canada, the United States, Italy, France, and (...) Germany what types of services they prefer (autism-specific, mixed-disability, or general/inclusive/mainstream). This paper presents the advantages and disadvantages of different service types, identified through inductive thematic coding and organized into higher-level themes focusing on clinical, structural, societal, interpersonal, and personal aspects of services. Autism-specific services were praised for addressing autism needs, helping clinically, and providing interpersonal benefits of others understanding autism; general services were praised for inclusion, helping clinically, community obligations and awareness, and social skills development. Looking at the interaction of these different aspects in respondent narratives nuances debates about autism-specificity, with a complex interplay between clinical, interpersonal, and societal aspects. Clinical and social perspectives are not necessarily separate and opposed, but intertwined based on different understandings of inclusion. Compared to parents, adults focused more on harm/safety issues, enjoyment, and stereotyping among other themes, attending to personal themes. These findings do not identify one best service type, but suggest that determining the right service in a given context may be informed by definitions of and goals about inclusion. (shrink)