Disability and the Pandemic is inspired by the methodology of participatory research in which the power typically attributed to the researcher is given to research participants, either community members or community organizations. This authority can include community members defining the agenda, the process, and the actions taken. Traditionally, such work has included exactly the kinds of methods used here: oral testimony, story collection, and digital storytelling. One of the ways this project enacts a participatory approach is through its collaboration with the Institute on Disabilities, which was consulted extensively throughout the development of the project’s research agenda.

Further, the Institute’s existing project, We Will Talk About These Days, was used as a model for giving local disability organizations the power to identify community members as storytellers and collect interviews. This format allows community partners to lift up the stories most relevant to their communities. Finally, this project puts community media and writers who identify as disabled in partnership together with the freedom to define how the interviews will be contextualized for the broader community.

Interviews

Most interviews were conducted by phone, audio recorded, and then transcribed. Alternate modes of communication were implemented as needed to accommodate the needs of individual participants, including interview by email and the use of Spelling to Communicate (S2C).

Interviews were between between 30 and 60 minutes long. These short, targeted interviews allowed for access to hard-to-reach participants and took into account the stress of the pandemic on the lives of participants.

Storytellers were asked questions such as:

  • What was your daily routine prior to COVID-19?
  • How has COVID-19 impacted your life now? Your family? Your community?
  • What challenges have you faced/will you face due to COVID-19?
  • What are your concerns or hopes for the future?
  • If you have had COVID-19, what is your story of illness?
  • What has been lost in this past year?
  • What has been gained in this past year?

In collaboration with the PI, community partners also developed their own template of additional questions relevant to specific individuals or communities, such as:

  • If you could talk to your past self and give her some advice about the coming year, what advice would you give?
  • If you think back to very early in the pandemic, spring of 2020, what was happening in terms of [schooling/work/housing/health] at that point?
  • How was the summer of 2020 different for your family?
  • What was the return to [school/work/family life] like? Were there losses and gains?
  • What is [school/work/family life] like today?

Protection of Human Subjects as Collaborators

The project received RERB approval from Immaculata University. The research protocol seeks to protect and collaborate with storytellers in a number of ways.

  • Storytellers approved interview transcripts prior to publication, can choose to be removed from the project at any time, chose how to disclose their disability and with what terms, chose to share their name and image or remain anonymous, and chose the photos included on the website
  • Interviewers were friends, family, or services providers known to the participants in order to ensure that the individual needs of storytellers were accommodated
  • The budget was created to ensure that storytellers, as individuals from minoritized groups, were not merely used as objects of research, but are paid as co-creators of the project
  • Audio recordings were conducted by phone as to protect the health of all participants and collaborators during the pandemic

Lessons Learned

The primary innovation of the project was to adapt traditional oral history methods to the needs of rapid-response collection with hard to reach populations and to combine that work with the ability of community media to disseminate and shape local stories. Selected lessons learned are considered below to inform future projects.

Who should conduct the interviews?

The current process had interviews conducted by people known to the participant as part of the effort to improve access to hard-to-reach populations, such as people experiencing homelessness, people with intellectual disabilities, and people with individualized communication needs. This meant family, friends, or support staff conducted interviews. One drawback of this method was that the interviewers had to be recruited along with the participant, so it created another step prior to conducting the interview. When an interviewer could not be found, the PI conducted the interview. Interviewers were not trained in interview techniques, and would not have the time to engage in such training. The most meaningful drawback in terms of interview methodology was the lack of follow-up questions. If funding were possible to support a dedicated staff member to interview participants, the project could offer that as an option to participants who preferred it.

What should the PI’s relationship be to the editorial process?

Disability and the Pandemic is part social justice journalism project. Funding supported writers, and in some cases editors, to enable community media outlets to cover the impacts of COVID on the local disability community. The project design was explicitly developed to allow community media partners to maintain 100% independence over the editorial process due to the potential for conflict of interest between the PI and the press. In other words, the articles published by our media partners are funded by the project but not vetted in any way by the PI, whether for tone, narrative, accuracy, or angle.

However, in some cases the PI acted as an expert in the field, answering questions as background to help editors learn about disability issues. In one case, the PI facilitated an ad hoc meeting between a disability organization leader and newspaper editor in order to debrief on project methods. This would not normally be part of a traditional media outlet’s process, but in this case, it added a great deal of value to all parties.

Future projects should fund training for community journalists and conversations with editors that would aim to address the pipeline for young writers reporting on disability issues and enrich the connection between community media outlets and community members with disabilities.

Questions about project design, methods, or ethics?
Contact Principal Investigator, Dr. Kelly George at kgeorge@immaculata.edu.