Developing a co-produced, digital, and living archive of learning disability history: An exploration of ethics, ownership and new connectivities

开发共同制作的、数字化的、生动的学习障碍历史档案：对道德、所有权和新联系的探索

• 批准号: AH/K007459/1
• 负责人: Elizabeth Tilley
• 金额: $ 102.6万
• 依托单位: The Open University
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2014
• 资助国家: 英国
• 起止时间: 2014 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=AH%2FK007459%2F1
• 关键词: Developing; co; produced; digital; living

People with learning disabilities remain one of the most excluded groups in the UK. Researchers have attempted to address this entrenched exclusion by engaging with the voices and experiences of learning disabled people, in particular by collecting narratives relating to their personal and community histories. Yet such research has increasingly been shaped by people with learning disabilities themselves, as self-advocates and as researchers, who have developed a substantial critique of how academic knowledge about 'learning disability' is produced. Central to this has been the principle of 'nothing about us without us', leading to an increasing number of 'inclusive research' projects where people with learning disabilities have led or co-produced their own research. Drawing on personal testimony and storytelling, history and heritage has been a key focus for the development of inclusive research.This project is informed by both these criticisms of academic research and the interest in history and heritage as a means of supporting self-advocacy and social and political change. The project uses sustained participatory research methodology - and will be driven by a core research team comprising researchers with and without learning disabilities - to investigate how a co-produced, distributed and 'living' archive of learning disability history can be developed and sustained, drawing on recent developments in digital heritage and digital accessibility. During the project, a working prototype archive will be developed, subjected to a rigorous and iterative cycle of testing and redesign, alongside people with learning disabilities and other key stakeholders. The process of producing this prototype archive will enable the team to address a series of conceptual, ethical, legal and technological research questions; set out a sustainability plan for the long-term viability of a learning disability digital archive; and compile training resources and guidance for stakeholders in health and social care, education, and museums, libraries and archives to support people with learning disabilities to become actively involved in collating and recording their history.The inclusive research team will work collaboratively with self-advocates (Carlisle People First and the Uniting Friends, London) to explore the issues and potentials of individuals and groups digitalizing and archiving their own histories. In addition the implications of adding two key existing archives to the digital archive will be explored through the Maureen Oswin archive (The Open University) and the Mencap 16mm film collection (University of East London). The technical development of the archive will be led by the Rix Centre and informed by their established approach to inclusive digital self-advocacy tools. Drawing in consultants with expertise in working with developers and designers, the technical development will be achieved through a series of inclusive and iterative workshops, sandpit sessions and user-testing sessions. The project will conclude with the launch of a sustainable digital and living archive and with suitable and co-designed training resources aimed at people with learning disabilities, the people who support them and other key stakeholders. The whole project's process itself will be actively engaged with and the research team will generate ethnographic observations; interviews and conduct focus groups with key stakeholders in the fields of digital technology, heritage, and health and social care policy and practice. As a result the project will lead to a range of academic and practice-orientated insights in the form of academic papers, sector-focused publications, freely available video blogs which will make a substantial contribution to future practice in both social care and heritage sector contexts and to academic research at the intersection of disability studies, social care, museums and heritage studies and inclusive new media.

在英国，学习障碍者仍然是最受排斥的群体之一。研究人员试图通过与学习障碍者的声音和经历接触，特别是通过收集与他们的个人和社区历史有关的叙述，来解决这种根深蒂固的排斥。然而，这样的研究已经越来越多地形成了学习障碍的人自己，作为自我倡导者和研究人员，谁已经开发了一个关于“学习障碍”的学术知识是如何产生实质性的批评。这一点的核心是“没有我们就没有我们”的原则，导致越来越多的“包容性研究”项目，其中有学习障碍的人领导或共同制作自己的研究。历史和遗产是发展包容性研究的一个重点，它借鉴了个人的证词和故事，这一项目既受到了对学术研究的批评，也受到了对历史和遗产的兴趣，因为这是一种支持自我宣传和社会政治变革的手段。该项目采用持续的参与式研究方法，并将由一个核心研究团队驱动，该团队由有学习障碍和无学习障碍的研究人员组成，以调查如何利用数字遗产和数字无障碍的最新发展，开发和维持一个共同制作，分发和“生活”的学习障碍历史档案。在该项目期间，将开发一个工作原型档案，与有学习障碍的人和其他主要利益攸关方一起进行严格的迭代测试和重新设计。制作这一原型档案的过程将使该小组能够解决一系列概念、伦理、法律的和技术研究问题;为学习障碍数字档案的长期可行性制定可持续性计划;并为卫生和社会保健、教育和博物馆的利益攸关方汇编培训资源和指南，图书馆和档案馆，以支持有学习障碍的人积极参与整理和记录他们的历史。包容性研究小组将与自我倡导者合作（卡莱尔人民第一和团结的朋友，伦敦）探讨个人和团体数字化和存档自己的历史的问题和潜力。此外，将通过Maureen Oswin档案馆（开放大学）和Mencap 16毫米电影收藏（东伦敦大学）探讨将两个关键的现有档案馆加入数字档案馆的影响。档案的技术开发将由里克斯中心领导，并借鉴其对包容性数字自我宣传工具的既定做法。技术开发将通过一系列包容性和迭代性的研讨会、沙坑会议和用户测试会议来实现。该项目最后将推出一个可持续的数字和生活档案，并提供针对有学习障碍的人、支持他们的人和其他关键利益攸关方的适当和共同设计的培训资源。整个项目的过程本身将积极参与，研究团队将产生民族志观察;采访并与数字技术，遗产，健康和社会护理政策和实践领域的关键利益相关者进行焦点小组。因此，该项目将以学术论文、以行业为中心的出版物、免费视频博客的形式产生一系列学术和实践导向的见解，这将为社会关怀和遗产领域的未来实践以及残疾研究、社会关怀、博物馆和遗产研究以及包容性新媒体交叉点的学术研究做出重大贡献。

项目成果

Conference: The good, the bad, the ugly, in Community Living Magazine

会议：社区生活杂志中的好、坏、丑陋

• 发表时间: 2017
• 作者: Green, V.

Surviving through story: Experiences of people with learning disabilities in the covid19 pandemic 2020-2021.

• DOI: 10.1111/bld.12463
• 发表时间: 2022-06
• 期刊: BRITISH JOURNAL OF LEARNING DISABILITIES
• 影响因子: 1.5
• 作者: Bartlett, Terry;Charlesworth, Pat;Choksi, Ajay;Christian, Paul;Gentry, Susie;Green, Vicky;Grove, Nicola;Hart, Craig;Kwiatkowska, Gosia;Ledger, Sue;Murphy, Sharon;Tilley, Liz;Tokley, Kate
• 通讯作者: Tokley, Kate

Communities, Archives and New Collaborative Practices

社区、档案馆和新的合作实践

• 发表时间: 2020
• 作者: Graham, H.

The public and the relational: The collaborative practices of the inclusive archive of learning disability history

公众与相关：学习障碍历史包容性档案馆的协作实践

• 发表时间: 2020
• 期刊: Communities, Archives and New Collaborative Practices
• 作者: Graham H.

The history of the history of learning disability

学习障碍史的历史

• DOI: 10.1111/bld.12461
• 发表时间: 2022
• 期刊: British Journal of Learning Disabilities
• 影响因子: 1.5
• 作者: Jarrett S