Disability & Society最新文献

英文中文

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-05-28 DOI: 10.1080/09687599.2022.2072586

引用次数: 0

‘… they had interpreted “disability” as referring to a patently visible disability’: experience of a patient group with NICE “……他们把‘残疾’解释为明显可见的残疾:NICE患者群体的经历。

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-05-04 DOI: 10.1080/09687599.2022.2060804

J. Barman-Aksözen, F. Granata, M. Aksözen, Cornelia Dechant, R. Falchetto

Abstract Erythropoietic protoporphyria (EPP) is an ultra-rare genetic disorder characterised by intolerance to visible light. Starting in early childhood, people with EPP suffer from social isolation, impaired educational and occupational opportunities, and low quality of life. Afamelanotide is the only effective and approved therapy for EPP. In England, its cost-effectiveness is currently assessed by the National Institute for Health and Care Excellence (NICE), which in 2018 issued a negative recommendation for funding. Stakeholder organisations, including our patient organisation, submitted appeals against the recommendation, which were upheld in all possible grounds. Moreover, the appeal panel expressed concerns about whether the evaluating committee discriminated against people with EPP and suggested that it seek guidance regarding the Equality Act 2010. However, three years later, the identified issues have not been addressed and patients in England remain without treatment. Afamelanotide represents another example for the trend towards a loss of fairness in NICE decisions.

摘要红细胞生成性原卟啉（EPP）是一种极其罕见的遗传病，其特征是对可见光不耐受。从儿童早期开始，EPP患者就遭受社会孤立、教育和职业机会受损以及生活质量低下的折磨。阿法美拉诺肽是唯一有效且经批准的EPP治疗方法。在英格兰，其成本效益目前由国家健康与护理卓越研究所（NICE）进行评估，该研究所于2018年发布了负面的资金建议。利益相关者组织，包括我们的患者组织，对该建议提出了上诉，并以各种可能的理由予以支持。此外，上诉小组对评估委员会是否歧视EPP患者表示关切，并建议其寻求有关《2010年平等法》的指导。然而，三年后，已确定的问题仍未得到解决，英格兰的患者仍然没有得到治疗。Afamelanotide代表了NICE决策中失去公平性的趋势的另一个例子。

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引用次数: 2

Poverty alleviation for people with disabilities in China: policy, practice, exclusionary effects, and ways forward 中国残疾人扶贫：政策、实践、排斥效应和前进道路

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-25 DOI: 10.1080/09687599.2022.2065464

Yuan Wang, C. Qi, Yu-hong Zhu

Abstract Adopting an approach that differs from practices in other countries, China has made many achievements in reducing poverty for people with disabilities using two successful types of policies and a unique political mobilization mechanism. However, inconsistencies between the policies and their implementation in the Chinese policy environment has produced new exclusionary effects, hindering the process of social integration for people with disabilities. These obstacles need to be addressed.

摘要中国采取了不同于其他国家的做法，通过两种成功的政策和独特的政治动员机制，在减少残疾人贫困方面取得了许多成就。然而，这些政策与其在中国政策环境中的实施之间的不一致产生了新的排斥效应，阻碍了残疾人的社会融合进程。这些障碍需要解决。

引用次数: 4

Volunteering and the response to COVID-19 in the UK 英国的志愿服务和应对COVID-19

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-24 DOI: 10.1080/09687599.2022.2067469

R. Fish, R. Hibbin, Cheryl Simmill-Binning

Abstract This article provides an insight into the voluntary sector’s response to the COVID-19 pandemic in one UK region, using qualitative evidence from a rapid evaluation study with leaders of volunteer agencies. We picked out the information relevant to services that disabled people access, as a way to provide a snapshot of the issues experienced during the various lockdowns, as well as participants’ concerns for the future of volunteering in the UK.

摘要本文利用来自志愿者机构领导人的快速评估研究的定性证据，深入了解了英国一个地区志愿部门对新冠肺炎大流行的反应。我们挑选了与残疾人获得的服务相关的信息，以提供各种封锁期间所经历问题的快照，以及参与者对英国志愿服务未来的担忧。

引用次数: 1

Livestreaming: exploring the obstacles and possibilities of digital usage for people with disabilities 直播：探索残疾人数字使用的障碍和可能性

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-20 DOI: 10.1080/09687599.2022.2065465

Zhongxuan Lin, Jiawen Tang, Heng Hui

Abstract The rapid development of information and communication technology (ICT) has had increasing influence, both positive and negative, on people with disabilities. How does ICT impact people with disabilities and what are the subjective experiences, feelings, attitudes, and understanding of people with disabilities under this influence? To address these questions, we conducted experiential and experimental research – one of the authors, Hui Heng, a visually impaired person, conducted a total of ten livestreams of his daily commute – to explore and experience vividly the obstacles and opportunities of ICT usage in a creative way. We argue that this experiential and experimental livestreaming demonstrates people with disabilities’ right to be seen and people without disabilities’ right to observe and recognize the diversity of our society.

摘要信息和通信技术的快速发展对残疾人产生了越来越大的积极和消极影响。信息和通信技术如何影响残疾人？在这种影响下，残疾人的主观体验、感受、态度和理解是什么？为了解决这些问题，我们进行了体验和实验研究——作者之一、视障人士惠恒对他的日常通勤进行了总共十次直播——以创造性的方式生动地探索和体验ICT使用的障碍和机会。我们认为，这种体验式和实验性的直播展示了残疾人被看到的权利，以及非残疾人观察和认可我们社会多样性的权利。

引用次数: 0

Announcement of doctoral theses 博士论文公告

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-13 DOI: 10.1080/09687599.2022.2059836

引用次数: 0

A call to collect and analyse recordings of personal independence payment assessments 呼吁收集和分析个人独立付款评估记录

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-11 DOI: 10.1080/09687599.2022.2060805

J. Webb, Saul Albert

Abstract Recent UK policy changes enable claimants to record their Personal Independence Payment (PIP) assessments, presenting an opportunity to study how they are produced interactionally. Disabled people have often reported feeling disempowered by PIP assessments, and these assessments are notoriously inaccurate – the vast majority are overturned in the claimants’ favour upon appeal. Given the quality of claimants’ lives often depends on their outcome, it is urgent to learn how the assessment process yields so many successful appeals. Here we analyse a small sample of one PIP assessment recording, uploaded to YouTube by the claimant, to show the importance of understanding these high-stakes interactional situations. We intend for this to show the importance of looking at the interactional detail of PIP assessments, which have hitherto been hidden from scrutiny because of the difficulty of obtaining recordings of assessments.

最近英国的政策变化使索赔人能够记录他们的个人独立付款(PIP)评估，提供了一个机会来研究他们是如何产生互动的。残疾人经常报告说，他们被PIP评估剥夺了权力，而这些评估是出了名的不准确——在上诉时，绝大多数评估都被推翻了，有利于索赔人。鉴于索赔人的生活质量往往取决于他们的结果，迫切需要了解评估过程如何产生如此多的成功上诉。在这里，我们分析了一个PIP评估记录的小样本，由索赔人上传到YouTube上，以显示理解这些高风险互动情况的重要性。我们打算这样做是为了表明研究和平执行方案评估的相互作用细节的重要性，由于难以获得评估记录，这些评估迄今未受到审查。

引用次数: 0

Ataxia and me – living within a neurological hierarchy 共济失调和我——生活在神经系统中

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-09 DOI: 10.1080/09687599.2022.2034110

Tallulah Clark

Abstract By its very nature, the term Neurodiversity promotes the concept of biodiversity, the wonderful realm of neurocognitive functioning. Why is it that a paradigm that sets out to celebrate and give voice to those belonging to the neurodiverse community ostensibly silences those with rarer conditions? Having a rare neurological condition often intrinsically means living within the neurodiverse community alongside those with more prevalent ailments yet simultaneously living diametrically opposed. More uncommon and misunderstood manifestations are often demonised and condemned as they deviate from what society deems as normal. The neurodiverse community has been limited to those with more prevalent and understood illnesses due to a lack of awareness surrounding other neurological disorders such as ataxia. This article questions the presence of a hierarchy within the neurodiverse community highlighting how it can often exacerbate feelings of inadequacy and shame for those with rarer conditions.

摘要从本质上讲，“神经多样性”一词促进了生物多样性的概念，即神经认知功能的奇妙领域。为什么一种旨在庆祝和表达神经多样性群体成员声音的范式表面上让那些患有罕见疾病的人沉默了？患有罕见的神经系统疾病通常本质上意味着与那些患有更常见疾病的人一起生活在神经多样性的社区中，但同时又截然相反。更不常见和被误解的表现往往被妖魔化和谴责，因为它们偏离了社会认为的正常。由于缺乏对共济失调等其他神经系统疾病的认识，神经多样性群体仅限于那些患有更普遍和更容易理解的疾病的人。这篇文章质疑神经多样性群体中存在的等级制度，强调它如何经常加剧那些患有罕见疾病的人的不足感和羞耻感。

引用次数: 0

Plasma and CSF NfL are differentially associated with biomarker evidence of neurodegeneration in a community-based sample of 70-year-olds. 在一个以社区为基础的 70 岁样本中，血浆和脑脊液 NfL 与神经退行性变的生物标志物证据存在不同的关联。

IF 4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-03-05 eCollection Date: 2022-01-01 DOI: 10.1002/dad2.12295

Anna Dittrich, Nicholas J Ashton, Henrik Zetterberg, Kaj Blennow, Joel Simrén, Fiona Geiger, Anna Zettergren, Sara Shams, Alejandra Machado, Eric Westman, Michael Schöll, Ingmar Skoog, Silke Kern

Neurofilament light protein (NfL) in cerebrospinal fluid (CSF) and plasma (P) are suggested to be interchangeable markers of neurodegeneration. However, evidence is scarce from community-based samples. NfL was examined in a small-scale sample of 287 individuals from the Gothenburg H70 Birth cohort 1944 study, using linear models in relation to CSF and magnetic resonance imaging (MRI) biomarker evidence of neurodegeneration. CSF-NfL and P-NfL present distinct associations with biomarker evidence of Alzheimer's disease (AD) pathology and neurodegeneration. P-NfL was associated with several markers that are characteristic of AD, including smaller hippocampal volumes, amyloid beta (Aβ)₄₂, Aβ_42/40, and Aβ₄₂/t-tau (total tau). CSF-NfL demonstrated associations with measures of synaptic and neurodegeneration, including t-tau, phosphorylated tau (p-tau), and neurogranin. Our findings suggest that P-NfL and CSF-NfL may exert different effects on markers of neurodegeneration in a small-scale community-based sample of 70-year-olds.

脑脊液（CSF）和血浆（P）中的神经丝蛋白（NfL）被认为是神经变性的可互换标记物。然而，来自社区样本的证据却很少。在哥德堡 H70 出生队列 1944 研究的 287 个小规模样本中，使用线性模型对 NfL 与 CSF 和磁共振成像（MRI）生物标志物神经变性证据的关系进行了研究。CSF-NfL和P-NfL与阿尔茨海默病（AD）病理和神经变性的生物标志物证据存在不同的关联。P-NfL与一些具有阿尔茨海默病特征的标记物相关，包括海马体积较小、淀粉样β（Aβ）42、Aβ42/40和Aβ42/t-tau（总tau）。CSF-NfL与突触和神经退行性变的测量结果有关，包括t-tau、磷酸化tau（p-tau）和神经粒蛋白。我们的研究结果表明，P-NfL和CSF-NfL可能会对基于社区的小规模70岁样本中的神经变性指标产生不同的影响。

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引用次数: 0

Ableism versus free speech in Australia: challenging online hate speech toward people with Down syndrome 澳大利亚的残疾歧视与言论自由:挑战针对唐氏综合症患者的网上仇恨言论

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-02-25 DOI: 10.1080/09687599.2022.2041402

Belinda Johnson, Raelene West

Abstract Negative, ableist discourse challenging the rights of people with Down syndrome to receive support services and even to be born regularly arise on social media. This disability community has retaliated against such hate speech with resistance narratives that promote the value of people with Down syndrome, with few other recourses available. This article explores online free speech versus ableism in Australia through a major case study of 60 Minutes Australia Facebook discussions. Analysis identifies types of ableism expressed, types of harm caused and dimensions of grassroots responses. Using Timothy Garton Ash’s 2016 work Free Speech as a basis for contemporary analysis, we discuss: to what extent should harmful and offensive comments directed at vulnerable populations be tolerated in the name of free speech; might negative, ableist discourse contribute to any social good; and what mechanisms beyond grassroots resistance narratives might effectively respond to harmful, online ableist discourses. Points of interest The article looks at whether the right to free speech is more important than the harmful effects of online hate speech towards people with Down syndrome. We use the ideas in a book on Free Speech by Timothy Garton Ash to think about whether online hate speech should be allowed or silenced. Our analysis is based on a case study of Facebook discussion threads from a 60 Minutes Australia television segment. People in the disability community speaking up to create resistance narratives is the main way that online disability hate speech is challenged. Other ways that could help are laws, government agencies providing support materials, and social media rules.

社交媒体上经常出现质疑唐氏综合症患者获得支持服务甚至出生权利的消极、能干的言论。这个残疾人社区用抵抗叙事来报复这种仇恨言论，这些叙事宣传唐氏综合症患者的价值，而其他资源却很少。本文通过一个60人的重大案例研究，探讨了澳大利亚的网络言论自由与能力主义澳大利亚Facebook讨论分钟。分析确定了表达的能力主义类型、造成的伤害类型和基层反应的维度。利用蒂莫西·加顿·阿什2016年的作品《言论自由》作为当代分析的基础，我们讨论了：以言论自由的名义，针对弱势群体的有害和冒犯性言论应该在多大程度上得到容忍；消极的、有能力的话语可能有助于任何社会公益；以及草根抵抗叙事之外的哪些机制可能有效应对有害的网络能者话语。兴趣点这篇文章着眼于言论自由权是否比网络仇恨言论对唐氏综合症患者的有害影响更重要。我们用蒂莫西·加顿·阿什（Timothy Garton Ash）在一本关于言论自由的书中的想法来思考网络仇恨言论是应该被允许还是应该被噤声。我们的分析是基于一个来自60 分钟澳大利亚电视节目。残疾群体中的人们发声创造抵抗叙事是在线残疾仇恨言论受到挑战的主要方式。其他可以提供帮助的方式包括法律、提供支持材料的政府机构和社交媒体规则。

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引用次数: 1

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