The Archive of the Unseen
RESEARCH HELP NEEDED
We would like to invite you to take part in Christopher Samuel’s research. Your participation in this research is entirely voluntary, but you will be paid a small fee to take part. Before you decide whether you would like to be interviewed or not, we would like you to understand why the research is being done and what it would involve for you.
Please read the following information carefully and if you have any questions at all, please contact the freelance producer Jennifer Gilbert via email on email@example.com. If phone is better please let us know and we can chat over the phone instead.
The research is funded by Unlimited and the Wellcome Collection, London.
What is the project?
The Archive of the Unseen will be a touring artwork consisting of an interactive display housed in a custom-built microform reader/viewer unit. Using this, viewers will navigate an encyclopedic narrative, exploring Christopher’s lived experience, as a black disabled man from a working-class background growing up in the 1970s, combined with archive materials from Wellcome Collection and other sources, including medical records and interview research. The work is being made to be exhibited around the UK, as well as having accessible content that can be accessed online at any point.
This work builds on from the Unlimited and Wellcome Collection research project that Christopher completed in 2020. In the original research project, Christopher had the opportunity to explore the Wellcome Collection. He was hoping to find out if his experience of growing up in the 1970s as a black disabled child from a working-class family, was represented in the collection. He found that he was not represented in his ethnicity, social class, or family circumstances within the archive materials. He produced a presentation and developed the concept for this work from this research. Overall, the piece expresses the ideas of health and challenges the standard narrative of what it is to grow up disabled in the UK.
What is the aim of the research?
Christopher is seeking the views and experiences of people who grew up with a disability in the UK, from the 1960s - 1990s. More specifically Christopher is looking for people of colour, born into working class families in the UK, but this is not exclusive. Anyone with a story or anecdote to tell, or a viewpoint that they’d like to share is welcome to participate. All stories will be anonymised in the final piece. Christopher is interested to see how people’s stories differ/are the same as his experience growing up a disabled black man from a working-class background.
By using personal narratives gathered from a range of people with different experiences of growing up disabled in the UK, Christopher aims to create a more inclusive and representative Archive of the Unseen – both in the physical element and online where the project will be housed.
What sort of things will the interview questions will look at?
The questions will be focused around: your diagnosis and when you became aware of it; terminology; your early life; schooling; making friends; and how others/society treated and perceived you.
What will happen to me if I take part and what do I have to do?
If you agree to take part, you will be interviewed over zoom for no longer than one hour by Christopher and Jennifer. This interview will be recorded, so that it can be watched again by those involved, and so that a transcript can be created from it, to help with the ongoing research, and the creation of the final artwork by Christopher. Being interviewed over zoom, complies with current Covid-19 regulations, and puts no one’s health at risk. If you prefer Microsoft Teams or Skype, this programme can be used instead.
What will happen to your information?
All the information we receive from you will be treated in the strictest confidence. It will be kept confidential and anonymised at the point of data collection – we will not include your name on any data that is collected. Any personally identifiable details will be kept separately from the data. As we type up the interview, we will make sure that your data remains anonymous by removing or replacing any information that identifies you, or anyone you know. We will also ask you to choose a pseudonym name, that will be used to identify your interview in the study. Anonymised audio recordings of interviews, and transcriptions, will be kept on password protected computers in a secure setting, to which only Christopher, Jennifer and the overall project management lead Ben Fredericks will have access to, in accordance with General Data Protection Regulation requirements. Your anonymised data will be analysed, looking at general patterns in the data across all participants, and we will ensure that there is no possibility of identification or re-identification from this point.
Where will the results of the research study be published?
We are currently looking into the possibility of a research paper being written from these research findings in the future, but further funding would need to be sought for this. This would focus on the key findings from the interviews, in relation to Christopher’s experiences and the missing information in the Wellcome Collection’s archives.
The research will form part of the touring artwork, both on the microform reader/viewer unit, as well as online where the project will be housed.
How to get involved?
Should the above be of interest and you meet the criteria, please contact Jennifer Gilbert via email to show your interest: firstname.lastname@example.org
The deadline for contacting Jennifer is Sunday 12 December 2021