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Chronic challenges: picturing chronic disease by the World Health Organization. 慢性挑战:世界卫生组织描绘慢性疾病。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-02-24 DOI: 10.1136/medhum-2023-012737
Alexander Medcalf, Karl Atkin
{"title":"Chronic challenges: picturing chronic disease by the World Health Organization.","authors":"Alexander Medcalf, Karl Atkin","doi":"10.1136/medhum-2023-012737","DOIUrl":"10.1136/medhum-2023-012737","url":null,"abstract":"<p><p>Chronic diseases are among the leading causes of mortality in the world, the subject of major regional and international efforts to tackle shared risk factors, implement prevention and control measures and set national targets as part of the drive towards universal health coverage. Yet there is a growing conviction that chronic diseases suffer an image problem. It has been suggested that the terminology 'dulls the senses' to the problems, and in an age where the mass media affords unprecedented opportunities to inform and persuade people to care about their health and that of others, chronic disease representation remains a contested and much debated issue.This article investigates how WHO created and disseminated visual narratives to raise popular consciousness and build a visual vocabulary around chronic disease in the second half of the 20th century. It examines the measures taken to conceptualise, photograph and publicise chronic diseases, and considers who had control over their representation. In focussing predominantly on cancer, diabetes and cardiovascular disease, it reveals different narratives; the power of scientific and technological progress; individual and community action for health; promising utopian and parallel dystopian visions. It embeds these in a production context which reveals an intricate picturing process involving overcoming challenges of representation. It uses this historical background to discuss issues relating to how chronic disease and chronic pain have been narrated visually, such as the ideas of emotional response, moral failure, how people navigate the 'risk society' and ultimately the concerns regarding the intentional and unintentional influence that the media can have on the image of disease given to society.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"48-58"},"PeriodicalIF":1.2,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877097/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141907968","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}
引用次数: 0
In many voices: exploring end-of-life care through patient, caregiver and physician narratives. 众声喧哗:通过病人、护理人员和医生的叙述探讨临终关怀。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-02-24 DOI: 10.1136/medhum-2024-012926
Tracy Moniz, Carolyn Melro, Chris Watling
{"title":"In many voices: exploring end-of-life care through patient, caregiver and physician narratives.","authors":"Tracy Moniz, Carolyn Melro, Chris Watling","doi":"10.1136/medhum-2024-012926","DOIUrl":"10.1136/medhum-2024-012926","url":null,"abstract":"<p><p>As the focus on end-of-life care intensifies, so too does the need to better understand the experiences of patients, caregivers and physicians. Delivering empathetic care requires a shared understanding of illness and its meaning and impact. The narratives of patients, caregivers and physicians each offer a distinct perspective on clinical experiences, yet comparative research is uncommon. This study compares written narratives about end-of-life illness and care by these groups.We created an archive of 332 first-person written narratives about end of life (patient=65, caregiver=156, physician=111) published between 1 January 2010 and 31 December 2019 through searching public domains (eg, national newspapers), personal blogs, and academic and literary journals in Canada. A comparative narrative analysis was conducted for patterns of content (eg, theme) and strategy (eg, characterisation).All three groups wrote about feeling gratitude. Patients also emphasised coping with change and carrying on. Caregivers further focused on grieving loss, and physicians most often wrote about valuing humanism. Physicians were most likely to ascribe agency to someone (ie, patients) or something (ie, death) other than themselves and to decentre themselves in the story. Patients and physicians most often made the patient the main character of their stories, while caregivers were as likely to centre the story on themselves as on the patient. Physicians were most likely to describe death as a source of tension, while patients and caregivers described the illness experience, often comparing it to battle. Physicians and caregivers tended to write testimonies, while patients wrote quests.Narrative research can illuminate unique aspects of end-of-life care. While death is a shared experience, each group approaches it differently. The disconnects have potential consequences for how end of life is experienced-whether patients' values are honoured, whether caregivers receive support, and whether physicians experience burn-out. We need to foster learning experiences that integrate these unique perspectives into medical education and practice, including leveraging the affordances of studying written narratives towards this end.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"39-47"},"PeriodicalIF":1.2,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141793750","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}
引用次数: 0
Health sciences training for disability inclusion: the need to engage with emotion. 促进残疾人融入的健康科学培训:情感参与的必要性。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-02-24 DOI: 10.1136/medhum-2024-013044
Brian Watermeyer
{"title":"Health sciences training for disability inclusion: the need to engage with emotion.","authors":"Brian Watermeyer","doi":"10.1136/medhum-2024-013044","DOIUrl":"10.1136/medhum-2024-013044","url":null,"abstract":"<p><p>Material aspects of disability inequality, such as access to quality services, housing and employment, are an urgent, worldwide concern. Less recognised though, are psychological layers of prejudice and discrimination, which play a significant role in cementing marginality. Against this backdrop, health practitioners can fill influential roles in shaping the self-identity and citizenship entitlement of people with disabilities. Yet, these professionals are, like the balance of society, socialised in environments where ableism is intrinsic, invisible and unquestioned. Disability prejudice has both an emotional and unconscious basis, and overcoming its effects is argued to require a personal engagement with feelings relating to bodily frailty, universal dependency, mortality and other prickly aspects of the human condition with which it is associated. These aspects are all at play in the clinical encounter between a health professional and a patient with disability, but the layered and consequential nature of such interactions for the flourishing and empowerment of people with disabilities, as well as the disability movement as a whole, is poorly understood. Evidence suggests that mere tuition in social justice has limited effects on behaviour in relation to issues of inequality and exclusion. In this paper I reflect on how socialisation in an ableist world can shape how disability is positioned in the clinical encounter, potentially leading to interactions which embed inequality. Drawing on my own experience as disability studies scholar and disabled person, I then describe a teaching method for facilitating shifts in the personal relationships which health sciences students have to disability, in the context of broader attempts to create clinical spaces and relationships in which empathy and self-compassion are encouraged.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"123-128"},"PeriodicalIF":1.2,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142406931","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}
引用次数: 0
Mental health treatments and the influence of culture: portrayals of hypnotherapy and electroconvulsive therapy in Singaporean television dramas. 心理健康治疗与文化的影响:新加坡电视剧中对催眠疗法和电休克疗法的描写。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-02-24 DOI: 10.1136/medhum-2023-012854
Graham Matthews, Melissa Ho
{"title":"Mental health treatments and the influence of culture: portrayals of hypnotherapy and electroconvulsive therapy in Singaporean television dramas.","authors":"Graham Matthews, Melissa Ho","doi":"10.1136/medhum-2023-012854","DOIUrl":"10.1136/medhum-2023-012854","url":null,"abstract":"<p><p>Stigma is one of the chief reasons for treatment-avoidant behaviour among people with mental health conditions. Stigmatising attitudes are spread through multiple determinants, including but not limited to: (i) individual beliefs; (ii) interpersonal influences; (iii) local cultural values and (iv) shared culture such as depictions in television shows. Our research indicates that popular television shows are currently understudied vectors for narratives that alternately reify or debunk assumptions and stereotypes about people with mental health conditions. Although such shows are fictional, they influence perception by normalising 'common sense' assumptions over extended periods of time. Consequently, representations of patients, psychiatrists and treatments influence knowledge and understanding of mental health and treatment-seeking behaviour. While storytelling about sickness can inspire possibilities and bestow meaning on traumatic experiences, fictional narratives written without sufficient care can have the inverse effect of curtailing horizons and limiting expectations. Problematic portrayals of patients, mental health professionals and psychological interventions are often reductive and may increase stigma and prevent treatment-seeking behaviour. This article analyses the representation of hypnotherapy and electroconvulsive therapy (ECT) in Singaporean television dramas that attract a wide, mainstream audience. Our diverse team investigated dramas in all four of the official languages of Singapore: English, Mandarin Chinese, Bahasa Melayu and Tamil. We found that depictions of hypnotherapy tend to produce problematic images of mental health professionals as manipulative, able to read minds, engaging in criminal behaviour, lacking in compassion and self-interested. Meanwhile, representations of ECT typically focus on the fear and distress of the patient, and it is primarily depicted as a disciplinary tool rather than a safe and effective medical procedure for patients whose condition is severe and refractory to pharmacotherapy and behavioural interventions. These depictions have the potential to discourage treatment-seeking behaviour-when early intervention has found to be crucial-among vulnerable populations.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"13-25"},"PeriodicalIF":1.2,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141591689","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}
引用次数: 0
Parental perspectives of trisomy 18: common threads of a life-limiting diagnosis. 父母对18三体的看法:限制生命的诊断的共同线索。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-02-17 DOI: 10.1136/medhum-2024-013188
Evelyn Armour, Melissa J MacPherson, Cheryl Mack, Michael van Manen
{"title":"Parental perspectives of trisomy 18: common threads of a life-limiting diagnosis.","authors":"Evelyn Armour, Melissa J MacPherson, Cheryl Mack, Michael van Manen","doi":"10.1136/medhum-2024-013188","DOIUrl":"https://doi.org/10.1136/medhum-2024-013188","url":null,"abstract":"<p><p>There is a narrative told among healthcare providers that the public stories of trisomy 18 do not reflect the experiences of the many families navigating this diagnosis. This is in the context of a recognised paradigm shift occurring in the treatment of children born with trisomy 18 from one focused solely on comfort to one that considers the potential of medical-surgical interventions to afford survival. This study aims to elicit and explore phenomenologically parents' narratives of trisomy 18. The focus is on the full spectrum of trisomy 18: whether it was diagnosed before or after birth, whether the child's life was of short or long duration and whether invasive or palliative care was sought. While trisomy 18 was not univocal of the children's stories, as a focus of this qualitative inquiry unified them. Healthcare providers may benefit from understanding how trisomy 18 may affect a particular diagnosis experience, whether made during pregnancy or the days after birth when parents are still getting to know their child. As parents live with this diagnosis, pregnancy and the life of their child may be shaped by an uncertainty of a life-limiting condition, whereby care is bounded by what is and is not possible. And, we may appreciate how trisomy 18 imparts meanings on ordinary and extraordinary moments for children and their families in a recognisable form. The understandings gained from this research may support healthcare professionals' reflective clinical practices as they care for children and their families affected by this diagnosis.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143442422","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}
引用次数: 0
Prozac as medicine, metaphor and identity: reimagining recovery as a rhetorical process in Lauren Slater's Prozac Diary. 在劳伦·斯莱特的《百忧解日记》中,百忧解作为药物、隐喻和身份:重新想象康复作为一个修辞过程。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-02-10 DOI: 10.1136/medhum-2024-012973
Swikriti Sanyal, Hemachandran Karah
{"title":"Prozac as medicine, metaphor and identity: reimagining recovery as a rhetorical process in Lauren Slater's <i>Prozac Diary</i>.","authors":"Swikriti Sanyal, Hemachandran Karah","doi":"10.1136/medhum-2024-012973","DOIUrl":"https://doi.org/10.1136/medhum-2024-012973","url":null,"abstract":"<p><p>This paper examines Lauren Slater's memoir, <i>Prozac Diary</i>, to understand the role of language in reimagining the notion of recovery. Written from the standpoint of a consumer of antidepressant drugs, <i>Prozac Diary</i> underlines the pervasiveness of professional psychiatry's pathologising practices and its psychopharmacological interventions in the 90s in the USA. Moreover, it unpacks the nuances of the relationship between the person and the pill at the intersections of myriad medical and socio-cultural discourses. Reading the memoir from the perspectives of disability studies scholars such as Kimberly E. Emmons and Lennard J. Davis, we argue that Slater's use of figurative language to critically engage with the Prozac discourse is a rhetorical act of self-care. Furthermore, we contend that by normalising illness and challenging the ableist assumptions of normalcy, Slater also invests in rhetorical care of the collective self/bodymind.This paper demonstrates how through a metaphorical representation of Prozac, Slater questions the predominant mental health discourses that construct the meanings of 'illness' and 'health' and shape illness and health-based identities. Simultaneously, through her dialogical negotiations with the Prozac discourse to reconstitute a complex health identity, she raises fundamental questions about the existence of a 'core', 'authentic', 'healthy', pre-Prozac selfhood that the drug claims to restore. Therefore, by unravelling the intrapersonal, socio-cultural and discursive ramifications of recovery, as opposed to psychiatry's perfunctory understanding of biological cure as a restoration of a socially desirable state of 'normalcy', she is able to reclaim the lived experience of recovery. We argue that in <i>Prozac Diary</i>, recovery does not merely imply a passive internalisation of psychiatry's biological determinism and its psychopharmaceutical approaches. Instead, it is a rhetorical process that enables the medicalised individuals to actively engage with the mental health system and interrogate the possibility of critically responding to its normative frameworks as agentic subjects.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143392299","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}
引用次数: 0
Finland's New Children's Hospital and resurgent charity in a Nordic post-welfare state. 芬兰的新儿童医院和北欧后福利国家复兴的慈善事业。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-02-08 DOI: 10.1136/medhum-2024-013128
Henni Alava, Janette Lindroos, Arvi Pihlman
{"title":"Finland's New Children's Hospital and resurgent charity in a Nordic post-welfare state.","authors":"Henni Alava, Janette Lindroos, Arvi Pihlman","doi":"10.1136/medhum-2024-013128","DOIUrl":"https://doi.org/10.1136/medhum-2024-013128","url":null,"abstract":"<p><p>Finland's New Children's Hospital (NCH) opened in 2018 after a high-profile charity campaign. Through an analysis of the campaign, we illustrate how debates about children's hospitals and charities are simultaneously shaped by universal debates over the ownership and funding of healthcare services, and by the particularities of historical context and local institutional arrangements. Such debates also draw from and contribute to shaping cultural repertoires, particularly shared beliefs and values concerning children, the state and charity. In Finland, the NCH marked a break from an established model of publicly funded hospitals, and a return to the pre-welfare state era when charities played a role in healthcare. The campaign thus generated substantial public debate, in which we identify three core claims: (1) Hospitals must be built with public funding and oversight. (2) Children are suffering because politicians have failed, and a new model is needed. (3) The NCH further strengthens Finland's excellence in paediatric healthcare and promotes health technology exports. Over the course of the campaign, critique faded away, and the second and third lines of argument came to dominate public debate. Through a reflection on the historically changing relations between state, charity and children that shaped what we conceptualise as the NCH assemblage, we show how clichéd cultural tropes naturalised the political shift toward a post-welfare state that is embedded in the NCH campaign. As citizens without voter rights, children are exceptionally easy for politicians to sidestep when allocating funds. Yet, as what Sara Ahmed describes as 'objects of feeling', children are also exceptionally potent targets for charity, who, in the NCH case, came to serve as tools for the neoliberal disassembling and reassembling of healthcare services in Finland.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374632","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}
引用次数: 0
On the consequences of childbirth: obstetrics/gynaecology, comparative anatomy and racial theories in 19th century France and Brazil. 关于分娩的后果:19世纪法国和巴西的产科/妇科、比较解剖学和种族理论。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-02-08 DOI: 10.1136/medhum-2024-013097
Maria Helena Pereira Toledo Machado
{"title":"On the consequences of childbirth: obstetrics/gynaecology, comparative anatomy and racial theories in 19th century France and Brazil.","authors":"Maria Helena Pereira Toledo Machado","doi":"10.1136/medhum-2024-013097","DOIUrl":"10.1136/medhum-2024-013097","url":null,"abstract":"<p><p>The following paper is centred on an analysis of comparative studies of the human pelvis developed over the 19th century by mostly French natural scientists, physical anthropologists, students of the human anatomy and doctors engaged in the initial stages of the emerging fields of gynaecology and obstetrics. As this paper will argue, there was considerable overlap between these specialisations, producing a fundamentally masculine, Eurocentric and racialised knowledge that had an enormous impact in establishing racially informed gynaecological and obstetric practices. This paper argues that comparative pelvic anatomy studies originated from the belief that African and Black women had specifically different pelves and genitalia and served to stratify women of different races and promoted racially oriented obstetric and gynaecological treatments. Despite their European origins, these French publications had profound repercussions across various regions of the Atlantic world and directly influenced the medical care provided to women of African descent in both slave and postemancipation societies, particularly in Brazil. In 1887, a doctoral candidate from the Rio de Janeiro Medical School (Brazil) wrote a dissertation in which he advocated and justified the racialised treatments offered to enslaved, free and soon-to-be-free women of African descendent who delivered their offspring at the medical school's maternity ward. In his advocacy for such practices, the author drew connections between the prevailing methods at Rio de Janeiro's Medical School to a long lineage of French medical thought on the racialised comparative anatomy of women's pelvises throughout the 19th century.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143041545","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}
引用次数: 0
Disability, digital technologies and the ambivalent allure of posthumanist/transhumanist futures. 残疾、数字技术和后人类/超人类未来的矛盾诱惑。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-01-02 DOI: 10.1136/medhum-2024-013020
Margrit Shildrick
{"title":"Disability, digital technologies and the ambivalent allure of posthumanist/transhumanist futures.","authors":"Margrit Shildrick","doi":"10.1136/medhum-2024-013020","DOIUrl":"10.1136/medhum-2024-013020","url":null,"abstract":"<p><p>Technologies, both simple and sophisticated, have always played a major role in the negotiation of a range of disabilities that are assumed to impede the expression of autonomous selfhood. Whether deployed as mechanical aides to ideally normalise physical differences, as organic-and often internal-supplements to bolster the performance of body and mind, or as digital enhancements that override the supposed shortcomings of neurodiversity, the widely accepted claim is that such technologies have a clear therapeutic value. It conjures the illusion of an unproblematised sequence of more complex technologies leading to increasingly enhanced function and the advent of superior selfhood. Those who identify as having disabilities, either physical or cognitive, are assured of a better future in which anomalies are sufficiently offset to the extent that they no longer attract disvalue.My paper offers a less conventional perspective that leaves behind the desire for individual autonomy and opens up the question of the transhuman and the posthuman. Rather than focusing on the bounded self at the centre of humanist thought, I ask what is at stake when human embodiment becomes intricately entangled with non-human materialities and digital coding. It is likely that the major developments in such 'prosthetic' technologies will strongly impact the field of disability. Beyond a merely functional usage, which is likely to dominate in the short term, urgent questions arise about the extent to which the category of the human can or should be sustained as the anchor of continuing life. In exploring the practical, philosophical and bioethical implications of newly emerging technologies, I distinguish between the motivation of transhumanism, which focuses on self-perfectibility and mastery, and a posthumanism that in seeking to radically decentre the very notion of human privilege and hierarchical distinctions offers an optimistic view of disability futures.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"685-693"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142630291","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}
引用次数: 0
Edges of perception: balancing sensory loss and potential in assistive technology. 感知的边缘:平衡感官丧失和辅助技术的潜力。
IF 1.2 3区 社会学
Medical Humanities Pub Date : 2025-01-02 DOI: 10.1136/medhum-2024-013023
Femke Krijger
{"title":"Edges of perception: balancing sensory loss and potential in assistive technology.","authors":"Femke Krijger","doi":"10.1136/medhum-2024-013023","DOIUrl":"10.1136/medhum-2024-013023","url":null,"abstract":"<p><p>Being deafblind means my perception differs profoundly from those who are conventionally sighted and have non-impaired hearing. A lot of hidden knowledge is to be found in the disparity between these differing experiences that could be of great value in developing assistive technologies that have a broad scope to engage with both disabled and non-disabled users. This article explores the balancing act between sensory loss and the potential inherent in all of us and how this should be part of the design process of haptic assistive technology.Facing the true impact of my sensory loss, I realised it held the unexpected gift of a-literally-different perspective. I am losing sights and sounds, but the world still reveals itself to me in many ways. Exploring my sensory potential, I combine daily life experiences and theoretical knowledge to better understand how to get the most out of my sensory processing systems. The goal is not to compensate what is lost, but stay connected in a way that enables me to live my life to the fullest.I undertake sensory life hacks based on the brain's unmatched capacity to adjust to circumstances and work with <i>any</i> kind of input. Both predicting processing and neuroplasticity offer an operating system of highly evolved flexibility that allows and even encourages creative solutions. I adjust my coping strategies to align them with these processes shaping my perceptual experience, balancing sensory loss and sensory gain.I believe there is great potential to enrich daily life experiences with haptic assistive technology, building on the natural sensory abilities we have as human beings, co-creating life. However, this comes with challenges: researchers who are not sensorily impaired should consider through experience that we all have limited perception in a way. At the edges of the familiar, you have to face your perceptual limits, pushing you out of your comfort zone and in doing so space is being created for growth; researchers used to the dominance of sight and hearing are less used to consciously experiencing the power of sensory proximity, such as touch and proprioception. These bodily tactile senses, however, are grounding senses in all of us and display a broad scope of sensations to be experienced.The hereditary disease that causes deafblindness forced me to explore the edges of my perception, and instead of devastating loss I discovered a richness of sensory abilities. This article is a plea to dive into this, using my lived experience and critical knowledge. Realising this potential can mean that inclusive research on assistive technologies might really do what it promises, co-creating technologies to enhance life experiences.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":" ","pages":"601-609"},"PeriodicalIF":1.2,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142839793","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}
引用次数: 0
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