Medical Humanities最新文献

{"title":"Deaf-led alarm design: technology and disability in home, work and parenthood.","authors":"Gretchen Von Koenig","doi":"10.1136/medhum-2024-013029","DOIUrl":"10.1136/medhum-2024-013029","url":null,"abstract":"<p><p>Domestic alarms are highly personal technological appendages that help us achieve an individual sense of safety and familial well-being-like baby monitors that help us care for children and alarm clocks that ensure a daily routine and help us get to work on time. Alarms can be understood as technologies that extend our eyes, ears, and memory to monitor our homes and ourselves in various ways beyond typical human capacity. The designs of domestic alarms tend to favour audible forms of alerting, and disabled users and inventors have hacked and redesigned alarms to fit their own families' needs. Alarm design can tell us what type of domestic futures designers and technologists have imagined, casting visions about who is fit for parenthood and who is a reliable worker, and what types of futures disabled users imagined for themselves. As the future of these technologies becomes subsumed into smartphones and other IoT devices, a look into their predigital material forms uncovers episodes of disability agencies that assert a right to disability futures of domestic bliss and safety. Through the archives of The Deaf American and other deaf community publications, this research reviews the postwar alarm designs of Emerson Romero, a Cuban-American deaf activist and engineer, to show how deaf-led alarm designs are forms of material rhetoric that assert a right to a domestic future for disabled parents and workers.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"639-647"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773537","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Imagining alternative futures with augmentative and alternative communication: a manifesto.","authors":"Darryl Sellwood, Lateef McLeod, Kevin Williams, Katie Brown, Graham Pullin","doi":"10.1136/medhum-2024-013022","DOIUrl":"10.1136/medhum-2024-013022","url":null,"abstract":"<p><p>This manifesto seeks to challenge dominant narratives about the future of augmentative and alternative communication (AAC). Current predictions are mainly driven by technological developments-technologies usually being developed for different markets-and are often based on ableist assumptions. In online conversations and a discussion panel at the 2023 International Society for Augmentative and Alternative Communication conference, we explored alternative futures by adopting different starting positions. Our case is presented under five headings: questioning the dominance of predictions that artificial intelligence and brain-computer interfaces will define the future of AAC; resisting disability being framed medically, as a problem to be solved, yet acknowledging both the pleasures and pains of being disabled; declaring that people who use AAC-as cyborgs of necessity rather than choice-should have choice and ownership of our technologies; challenging notions of independence as the necessary end goal for disabled bodies and considering interdependence as a human right; imagining alternative futures in which all people who use AAC are accepted and embraced for our communication and self-expression. This manifesto is an invitation for further discussion, and we welcome responses. While our focus is AAC, and three of the authors use AAC, we believe that our stance could be relevant to other disability communities in turn. This paper is about who gets to imagine disability futures and whose voices are left out. It is about how uncritical these futures can be, often presuming values that disabled people, in all their diversity, may not share.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"620-623"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877025/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142559116","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Beyond the fingertips: imagining haptic technologies for a deafblind future.","authors":"Russ Palmer, Riitta Lahtinen, Raymond Holt","doi":"10.1136/medhum-2024-013025","DOIUrl":"10.1136/medhum-2024-013025","url":null,"abstract":"<p><p>In this paper, we imagine how future technologies could support people who have severe hearing and visual impairment or a deafblind condition. Much effort has gone into assistive technologies to improve access for people with visual or hearing impairments, and while some of these systems will work for people with dual sensory loss, this is not always the case. Fewer systems have been developed specifically for this group. To this end, we imagine what technologies might look like in the future if they were designed specifically for people with dual sensory impairment, based on the experiences of two of the authors in accessing various displays and events related to space and astronomy. Dual sensory loss can cover a very wide range of situations, and the precise history of each individual will have a strong effect on how they use residual senses and technologies. We therefore start by reviewing literature on deafblindness, looking at current efforts to make museums accessible to people with vision and hearing impairments and social-haptic communication, a method of augmenting vision and hearing with touch signals that has developed from the deafblind community. We move on to consider three case studies, each representing a different situation: the Rocket Garden at Kennedy Space Centre; visits to observatories to view constellations and planets and engagement with the livestreamed launch of the Mars 2020 mission. For each case study, we consider the challenges faced, and the way existing technologies have been adapted or new strategies improvised to provide access to these situations. We finish by considering where these technologies might usefully go in the future-we set out some desired characteristics for future technologies, imagine some technologies for the future and how these might have been applied to the three case studies.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"610-619"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877112/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142689220","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring cultural imaginaries of robots with children with brittle bone disease: a participatory design study.","authors":"Christina E Stimson","doi":"10.1136/medhum-2024-013039","DOIUrl":"10.1136/medhum-2024-013039","url":null,"abstract":"<p><p>A symbiotic relationship exists between narrative imaginaries of and real-life advancements in technology. Such cultural imaginings have a powerful influence on our understanding of the potential that technology has to affect our lives; as a result, narrative-based approaches to <i>participatory design</i> (PD) of technology are an active area of investigation.In this ongoing study, the following research questions are addressed: how can PD be optimised for the fields of robotics and assistive technology, particularly with regard to fostering empowerment and eliciting how people imagine the role of technology in their own futures? How can the symbiotic relationship between (popular) cultural imaginaries and real-life technological advancements be acknowledged within the PD process?The study synthesises fictional inquiry and science fiction prototyping methodologies and processes over multiple workshops. Its aim is to explore and develop conceptions of robotics and assistive technology of children with <i>osteogenesis imperfecta</i> (OI, commonly known as brittle bone disease) and their families, as these populations are under-represented in collaborative research and stand to benefit from future robotics development. Narrative-based approaches are complemented by participants' direct interaction with contemporary robots during each workshop and a 'robot home visit' to unite experiential understandings of robots and their current capabilities with possible futures, as well as foster mutual learning between stakeholders and designers. The study deploys a mixed methods research design with a critical posthumanist theoretical lens.This inclusive co-designed methodology should establish a rich, nuanced picture of how people currently imagine robots in their future and facilitate all involved to deepen these conceptions. It is anticipated that everyone taking part will empower themselves to imagine fully the range of possibilities in their own personal futures in our increasingly technologised world.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":"50 4","pages":"705-714"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877108/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142923313","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Why robot embodiment matters: questions of disability, race and intersectionality in the design of social robots.","authors":"Mark Paterson","doi":"10.1136/medhum-2024-013028","DOIUrl":"10.1136/medhum-2024-013028","url":null,"abstract":"<p><p>A growing minority of those with disabilities are people of color (POC), with, for example, autism diagnosis rates now higher for children of color than for white children in the USA. This trend underscores the need for assistive technologies, especially socially assistive robots, to be designed with intersectional users in mind. Outside of Japan, most robots are designed with white synthetic skin and able-bodied features, failing to reflect the diverse users they are meant to assist. This paper explores the concept of the \"engineering imaginary,\" the historical and cultural influences that shape these designs, and which tend to limit robot embodiment to white, able-bodied forms. Drawing on work from scholars like Lucy Suchman, Jennifer Rhee, Neda Atanasoski and Kalindi Vora, the paper critiques this engineering bias. A key historical moment in the production of the engineered imaginary of artificial humans is provided by Ovid's myth of Pygmalion and its influence on representations across literature, film, and then robotics. Furthermore, the physicality of the robot, and its role in the production of nonverbal communication (NVC) for more inclusive interaction with humans is explored, seeing these as steps toward what some roboticists are calling Artificial Empathy (AE). Through case studies like Bestic, Bina48, and HuggieBot 3.0, the paper explores what I call <i>the poverty of the engineering imaginary</i>, how current robotics design fails to properly address issues of race, gender, and disability. Ultimately, the paper argues for more inclusive robot designs that accommodate diverse bodies and social dynamics, questioning the pervasive norm of white, able-bodied robotic embodiment.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"694-704"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877043/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142523349","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Towards distributed facilitation in research teams: an example from itDf.","authors":"Orla Cronin","doi":"10.1136/medhum-2024-013027","DOIUrl":"10.1136/medhum-2024-013027","url":null,"abstract":"<p><p>This essay argues that facilitation is a valuable tool for research teams. It suggests that an external facilitator is particularly helpful for more complex gatherings, and that for smaller or more routine gatherings, building skills within teams to enable the distribution of facilitation across team members is a viable alternative to hiring an external facilitator. Distributed facilitation is a way of supporting internal facilitators by helping to mitigate the time and effort it takes them to manage both process and content.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"635-638"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142693789","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"This will keep me happy for weeks\": care objects, affect and graphic medicine.","authors":"Livine Ancy A, Sathyaraj Venkatesan","doi":"10.1136/medhum-2024-012904","DOIUrl":"10.1136/medhum-2024-012904","url":null,"abstract":"<p><p>Looking beyond anthropocentric care relationships reveals nuanced levels of interdependence among human and non-human entities. Attention to these heterogeneous inter-relationships illuminates the subtle and visceral affective intensities among diverse participants, including humans, objects and the environment, among others. The interdisciplinary field of graphic medicine foregrounds these entanglements through comic affordances, challenging the predominant notion that care belongs only at the scale of human beings. This article analyses selected sections from graphic medical narratives such as Brian Fies's <i>Mom's Cancer</i>, Sarah Leavitt's <i>Tangles</i> and Joyce Farmer's <i>Special Exits</i> to illustrate how objects become a source of care for humans during illness, thus becoming care objects. Furthermore, using the affordances of comics, this essay examines, how the selected sections of the abovementioned graphic narratives portray the often unnoticed/overlooked affective entanglement between the sufferers and objects. In doing so, this article underscores the inter-relatedness between humans and non-human entities within the context of caregiving.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"764-769"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141591678","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Will psychology ever 'join hands' with disability studies? Opportunities and challenges in working towards structurally competent and disability-affirmative psychotherapy for energy limiting conditions.","authors":"Joanne Hunt","doi":"10.1136/medhum-2023-012877","DOIUrl":"10.1136/medhum-2023-012877","url":null,"abstract":"<p><p>Despite sustained efforts among critically informed scholars to integrate thinking from disability studies into psychology, the psy disciplines continue to largely neglect the lived experience of disabled people and overlook disability as a form of social inequity and valued culture. In this article, I make a renewed case for integrating thinking from disability studies into psy, in particular within the psychotherapy professions and in the case of 'energy limiting conditions', a grass-roots concept that includes clinically and socially marginalised chronic illness such as Long COVID. Drawing on my experience as a disabled practitioner, and situating this within extant literature on disability and psy, I take an autoethnographic approach to exploring opportunities and challenges in bridging the interdisciplinary divide. I argue that unacknowledged institutional ableism within psy reproduces and is reinforced by physical and attitudinal barriers for disabled practitioners and service users, engendering under-representation of disability in psychotherapy professions and lacunae in disability-affirmative conceptual resources. Additionally, I propose that hermeneutical lacunae are bolstered by documented defensive clinical practices pertaining to disability. After discussing a wealth of opportunities for integration offered by disability studies, and noting the institutional failure within psy to embrace disability-related demographic and epistemic diversity, I question whether ongoing epistemic and social exclusions within the psy disciplines constitute a case of 'willful epistemic ableism'. Drawing on theorising vis-à-vis epistemic injustice and epistemologies of ignorance, I signal a form of systematic, actively maintained and structurally incentivised (motivated) non-knowing that results in collective failure among dominant groups to recognise established hermeneutical resources of the disabled community and allies. I conclude with suggestions of how this form of epistemic injustice might be mitigated.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"728-739"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877048/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141447303","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Hybrid performances in sport: Cybathlon spectatorship for critically imagining technologies for disability futures.","authors":"Ned Barker, Harry Parker","doi":"10.1136/medhum-2024-013031","DOIUrl":"10.1136/medhum-2024-013031","url":null,"abstract":"<p><p>Disabled bodies have been historically marginalised in sporting arenas and spectacles. Assistive technologies have been increasingly featuring in, and changing, sporting landscapes. In some ways recent shifts have made disability more present and visible across many (para) sporting cultures, and yet sport continues to operate on a tiered system that assumes a normative able body. This paper responds to this moment by offering imaginaries of future hybrid performances that critically engage with the politics and possibilities of novel technologies in sporting arenas and their wider impact on disability futures. These were generated from a collaborative ethnography that centred on becoming spectators of the Cybathlon Games. The Cybathlon Games began in 2016 as a global event where people with disabilities compete with technologies such as Brain-Computer Interfaces or robotic Prosthesis. Our imaginings are presented as three speculative fragments in the form of pages ripped from a comic book series, <i>The In/Visibles</i> These fragments and critical reflections are grounded on themes generated through watching the Games together. The purpose of this paper is not to offer predictions or even visions of desirable futures. Rather we present future technologised sporting bodies and spectacles with a view to extend critical posthuman discussions to these arenas. Through this we highlight: (1) The <i>arbitrariness</i> of where to draw the between un/natural performances; (2) The <i>absurdities</i> of unrestricted and open use of performance technologies when hybrid forms and functions are judged through current sporting-humanist values; and (3) The need to stay <i>alert</i> to socioeconomic and political drivers of sporting and disability futures. We offer these three zones of friction to guide further research when navigating the complex and shifting relations between sport, technology and the (dis)abled body now and into the future.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"657-669"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877034/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142824689","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Narrative futures of pregnancy sickness: reproduction, disability, animality.","authors":"Sophie A Jones","doi":"10.1136/medhum-2024-013032","DOIUrl":"10.1136/medhum-2024-013032","url":null,"abstract":"<p><p>In Sarah Hall's short story 'Mrs Fox', a man wakes to find his wife, Sophia, vomiting. When Sophia's nausea continues, he imagines her wasting from a rare cancer; instead, she mutates into a fox and, after a brief captivity at their home, leaves him for the woods, only to reappear months later with a litter he claims as his progeny. Sophia's sickness is belatedly revealed as nausea and vomiting of pregnancy (NVP), and her metamorphosis from human into fox seems to have been triggered by conception. NVP, or 'morning sickness' as it is colloquially known, tends to appear in culture as plot reveal or punchline but rarely as experience. This narrative marginalisation parallels the condition's medical status. In its most severe form, <i>hyperemesis gravidarum</i>, NVP can lead to malnutrition and other serious health complications. However, the condition often goes untreated, a situation that has been linked to cultural fears of congenital disability in the wake of thalidomide. Long assumed to derive from the pregnancy hormone human chorionic gonadotropin, NVP is the subject of new genetic research that may hold the potential for new therapeutic interventions. Yet this research may also reinforce the theory that NVP is an evolutionary mechanism designed to isolate pregnant people from pathogens during the first trimester. In this article, I draw on this context to read 'Mrs Fox' as an ironic allegory of the 'evolutionary safety net' explanation for NVP. Drawing on work at the intersection of disability justice and reproductive justice, I argue that the therapeutic futures opened up by new research into NVP spotlight the need for closer attention to narratives of gestational sickness.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"670-677"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142755538","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}