The Perspective Collective, opening a window onto rights and reality: hearing and recording experiences of disability rights to shape future responses
The Covid 19 outbreak meant that the event had to move from a face to face to an online event. This disruption presented some challenges for us, as some of our presenters were unable to attend the rescheduled event in person, due to online teaching and caring commitments. However, the nature of the event meant that myself and my co presenter were able to ask the participants questions on their behalf and to use notes that they sent to us to stimulate the discussion. Questions concerned: Inclusion of people with Mental Health, Long term Health Conditions and Invisible Disabilities, Invisibility in the Record, The Limits of Traditional Research Methods, How to Include Children and Young People, and The Role of Assistive Technology. The event was still well attended, and networks were forged between students at Leeds University and Keele University, as well as independent researchers and stakeholders such as Cauldwell Children. Additionally, on reflection, the loss of the rigid structure of a traditional event with regimented presentations was positive, because it enabled conversations to develop organically and for people to ask tangential questions as they arose, which allowed us to identify common themes and issues which could be distilled and expanded upon in the future development of designs, publications and grant applications. These considerations dived into two broad themes of:
1. Theoretical and Ethical Considerations:
- Creating a space which is as inclusive as possible, whilst navigating the political models of disability. Consensus was that the project should develop without ascribing to a definition of disability.
- Balancing inclusive access to and use of archive materials with maintaining ownership of submissions by contributors to prevent use and potential exploitation of material. However, these concerns need be balanced with the potential of creating and perpetuating elitism and exclusion around discussions relating to disability.
- Protecting the project against ‘over regulation’ by any board or committee in terms of reviewing, accepting or rejecting submissions based on their perceived value to advancing useful narratives to the Disability Movement.
- Navigating the tensions between the concept of ‘safe spaces’ and the need ensure that contributors can express their experiences. The balance between independence and paternalism is a long running theme in relation to disability and it is important that any future project should not perpetuate negative aspects of this but should focus on vulnerability as a universal experience.
- Representing dimensions of experience in contributions, acknowledging intersectionality and the interplay between disability and other characteristics such as gender, age, sexuality, race and ethnicity, in order to address issues of invisibility in the record.
- Facilitating engagement by particularly vulnerable participants in the online space such as children, whilst ensuring their ability to express themselves in the most accessible way, at the same time ensuring their safety.
2. Practical Implementation and Design Considerations:
- Designing an interface which embodies the principles of Universal Design
- Ensuring compatibility with and where possible integrating Assistive Technology to ensure access
- Ensuring online safety and data encryption
- Training people with disabilities to maintain and develop the archive in the future
- Developing a system of dissemination, community and policy engagement
3. Next Steps:
Participants were keen to be involved in the development of the project. To disseminate the issues discussed at the event and to enter the discussion around archival practices and disabilities we will invite participants to co-author an article for placement in a specialist journal such as The Journal of the British Records Association, detailing the access issues inherent with archives, as demonstrated through the questions contributed to the KISI event and issues discussed. Co-authors will write sections based on their questions and presentations and issues raised during the event. We will also set up a committee of interested persons to explore funding opportunities to develop and maintain a long-term project.
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- Abigail Pearson
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- 01782 733222