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

在英国，有学习障碍的人仍然是最受排斥的群体之一。研究人员试图通过接触学习障碍人士的声音和经历，特别是通过收集有关他们个人和社区历史的叙述，来解决这种根深蒂固的排斥。然而，这种研究越来越多地由有学习障碍的人自己塑造，作为自我倡导者和研究人员，他们对如何产生关于“学习障碍”的学术知识提出了实质性的批评。这方面的核心原则是“没有我们就没有我们”，这导致了越来越多的“包容性研究”项目，在这些项目中，有学习障碍的人领导或共同开展了他们自己的研究。利用个人证词和故事叙述，历史和遗产一直是包容性研究发展的重点。这个项目受到了这些对学术研究的批评，以及对历史和遗产的兴趣，作为支持自我倡导和社会政治变革的一种手段。该项目采用持续的参与式研究方法，并将由一个由有和没有学习障碍的研究人员组成的核心研究小组推动，利用数字遗产和数字可及性方面的最新发展，研究如何开发和维持共同制作、分发和“活”的学习障碍历史档案。在项目期间，将开发一个工作原型档案，并与学习障碍人士和其他关键利益相关者一起进行严格的反复测试和重新设计。制作这个原型档案的过程将使团队能够解决一系列概念、伦理、法律和技术研究问题；为学习障碍数字档案的长期可行性制定可持续发展计划；为卫生和社会关怀、教育以及博物馆、图书馆和档案馆的利益攸关方编写培训资源和指南，以支持有学习障碍的人积极参与整理和记录他们的历史。包容性研究团队将与自我倡导者（卡莱尔人民第一和联合之友，伦敦）合作，探索个人和团体数字化和存档自己历史的问题和潜力。此外，通过Maureen Oswin档案（开放大学）和Mencap 16毫米电影收藏（东伦敦大学），将两个关键的现有档案添加到数字档案的影响进行探索。档案的技术开发将由Rix中心领导，并根据他们建立的包容性数字自我宣传工具的方法提供信息。吸引具有与开发人员和设计人员合作的专业知识的顾问，技术开发将通过一系列包容和迭代的研讨会、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，并为学习障碍人士、支持他们的人以及其他关键利益攸关方提供合适的、共同设计的培训资源。整个项目的过程本身将积极参与，研究团队将产生人种学观察；与数字技术、遗产、卫生和社会保健政策和实践领域的主要利益相关者进行访谈和焦点小组讨论。因此，该项目将以学术论文、行业出版物、免费视频博客的形式产生一系列学术和实践导向的见解，这将对未来社会关怀和遗产领域的实践以及残疾研究、社会关怀、博物馆和遗产研究以及包容性新媒体交叉领域的学术研究做出重大贡献。

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.