On this page, we tell the story of how our Co-Researcher Collective of disabled young people came together, as well as detail how we work together as a research team.
The Co-Researcher Collective consists of six disabled young people (all women, aged 19-30 years) who identify as living with life limiting and/or life threatening impairments (LL/LTIs). In recruiting co-researchers, the only ‘criteria’ placed upon participation was a desire to explore disabled people’s young lives and contribute to the process through undertaking project-related activities of co-researchers’ choice. Initial groundwork to build the Collective began early in the process — after funding was awarded (following co-authoring the bid for funding with young people, their families and our Community Research Partners).
Through virtual research environments, the Co-Researcher Collective is actively and meaningfully co-leading inquiry. To be clear (and to counter the often poor reporting of young people’s contributions in the literature), this involved: (i) supporting research design through discussion (planning both narrative and arts-informed approaches); (ii) co-writing interview schedules for young people and parent participants; (iii) recruiting participants for data collection and carrying out online interviews through email, Facebook Messenger and Skype; (iv) planning the project’s impact strategy and building relationships with impact partner organisations; (v) working with our community research partner organisations; (vi) meeting regularly via the Research Management Team to co-manage the research process as a whole; (vii) writing blogs and making films that communicate and document our processes and preliminary findings; (viii) presenting at conferences and research festivals; (ix) undertaking various public engagement and knowledge translation activities (online and offline); and (x) co-authoring articles for publication.
You can learn more about our Co-Researchers here.
After meeting Lucy Watts MBE, a prolific young disabled campaigner who currently serves as an Ambassador for the national charity Together for Short Lives — and now Lead Co- Researcher in Living Life to the Fullest — we were advised as to the benefits of online spaces towards building meaningful relationships with disabled young people. Lucy explained how virtual environments are critical to her advocacy and activist work and, in short, we listened, and this conversation significantly shaped inquiry moving forward. From this, online advertising through the project website and social media led to prospective Co-Researchers making initial contact (typically through Facebook Messenger) and eventually joining the Collective, enabling a radical revision of the didactic ways in which research into disabled young people’s lives is typically carried out. However, despite recruitment stressing the desire for diversity amongst Co-Researchers — with specific attempts made to recruit co-researchers with the label of learning disability and/or disabled young people from Black, Asian and minority ethnic backgrounds — all Co-Researchers recruited are young disabled White women from middle class backgrounds (all but two have a university degree). This highlights co-production as a potentially exclusive research space that lacks diversity, even in the context of disability research.
However, we quickly found that the Co-Researchers we did recruit had a desire for social change and curiosity as to the potentials of social research:
“As a young disabled person I answer a lot of surveys on my disability, my care and other similar topics. But I’m rarely asked about what it is really like to be 24 and disabled. No one has asked me whether I’m scared about my future or whether my life-limiting condition has impacted my life choices. These are not pleasant things to think about, but I can promise you, nearly every disabled person has thought about them. When I was asked whether I wanted to be a co-researcher for Living Life to the Fullest, I was excited by the idea of a project that focuses on those unasked questions. I wanted to help find out what our lives’ are really like and how we really feel about them.” – Emma Vogelmann, Co-Researcher, Living Life to the Fullest (The Co-Researcher Collective, 2018)
“The reason why I wanted to get involved in this project is because I feel that we have a duty to help young disabled people live their lives as they wish. To have experiences that, although are different and adapted from the experiences of our healthy counterparts, are just as rewarding — after all, we deserve that. Life is precious, let’s live it to the fullest.” – Sally Whitney, Co-Researcher, Living Life to the Fullest (The Co-Researcher Collective, 2018)
Importantly, in Living Life to the Fullest participation and leadership is shaped and adapted to fit around the needs and wants of Co-Researchers. As such, much of our communication with the Co-Researcher Collective takes place online — we connect daily through a closed Facebook group, Skype, FaceTime, email and WhatsApp. Far from embodying the tokenism that can plague research with disabled people (Liddiard, 2013), the Co-Researcher Collective has made important decisions and undertaken the majority of the fieldwork with young people thus far. This has ranged from designing interview schedules (which took place through a Facebook post to the group upon which Co-Researchers offered questions through ‘commenting’); to recruiting participants for interview (young disabled people and parents); carrying out online semi-structured qualitative interviews via new social technologies; grow- ing the Co-Researcher Collective through recruiting fellow Co-Researchers; writing articles and conference papers; promoting the project across social media platforms, and disseminating information via their own networks and organisations.
Co-researchers in Living Life to the Fullest carried out the majority of interviewees with disabled young interviewees. These largely took place through virtual methods: Skype, Facebook Messenger and email.
It was important to give our co-researchers to skills to access, recruit and collect data from interviewees. This happen through a series of informal Skype workshops and conversations and the construction of an Interview Kit for Co-Researchers. We share this below, but want to note here that it offered the practicalities of the process: a) our interview schedule, that we had collectively built through our private Facebook group, Skype and email; b) an Interviewing Guidelines document we put together to guide co-researchers in communicating with prospective interviewees, and supporting them to interview; and c) all of the standard research documents they would need to ethical recruit participants and secure informed consent (a consent form; a participant information sheets; and a debrief/sources of support document to follow up with after interviews had taken place).
In the Living Life to the Fullest project, quite simply, we believe that you can’t do high quality research about young disabled people’s lives without including young disabled people in the process: making decisions, co-leading the project, undertaking fieldwork (collecting data), collaborating in data analysis, and writing, sharing and promoting the research and its findings. Co-researchers’ contributions have shaped the project beyond ways we ever could have imagined at the outset. The project looks radically different because of their expert knowledge, contribution, and time.
In addition, co-researchers’ networks have enabled access to communities we may not otherwise have accessed, and their disabled identities and lived experiences of disability and dis/ableism have informed the research process in immeasurable ways. As an example, many of the questions generated through discussion and later adopted in the interview schedules emerged from a deep (lived) understanding of what it means to live with LL/LTIs as young people with short lives. As interlocutors and co-constructors of participants’ stories, Co-Researcher identity, subjectivity and embodiment became integral to the dialogical process of story- telling. While we acknowledge that, at times, this requires ethical considerations — both for prospective participants and Co-Researchers (and non-disabled researchers — see Goodley and Tregaskis, 2006), such questions have generated valuable and rich data for analysis.
According to INVOLVE (2016: 8), ‘the importance of saying thank you […] should not be underestimated’. Thus, in order to not reproduce the exploitative relationships that characterise histories of research on disabled children — or invite the critiques of tokenism that some suggest may be inherent to research with children and young people (see Coad and Lewis, 2004; Kellett, 2005b) — we have established a budget to fund Co-Researchers to purchase technology of their choice as recognition of their commitment and labour within the project. We have also invited Co-Researchers to become members of the research centre the Institute for the Study of the Human (iHuman) at the University of Sheffield — in acknowledgement that as researchers they should have access to research communities — and are offering Co-Researchers university certificates and references as evidence of their contribution of expertise, skills and knowledge to the project. This is important towards supporting the educational and work-based aspirations of Co-Researchers with LL/LTIs, the majority of who face significant barriers to higher education and meaningful employment (Abbott and Carpenter, 2014).
We have also sought separate funding for impact projects, in which we have paid co-researchers for their time. In addition, we have supported co-researchers to find paid employment in related projects.
We have also sought to showcase co-researchers’ individual work, achievements and voices outside of the project. Many of our co-researchers are advocates and activists across multiple areas. We feel it’s important to showcase their work and voice, especially where it relates to the project.
As an example, below we share our co-researcher Ruth’s talk, given at the Speen Festival in 2019. The event centred on a series of speakers answering a key question related to their lived experiences. The question Ruth answered – to an audience of over 150 people – was, What do you do when your full time job is coping with a life threatening illness? Ruth’s talk wasn’t given in directly relation to the project, but it covered so many of the themes we were speaking about as a Research Team at the time. Ruth’s talk was powerful in inviting the audience into her experiences – she articulated messages of determination, hope, vulnerability and her own approaches to managing her feelings towards death, dying and fragility. We promoted it on our project blog here. You can access a film of Ruth’s talk and a transcript below.