Notes from the Spreadsheets – the Joys and Pains of Creating a Community Mental Health Report
By Nora Fujita-Yuhas (they/she), Moonbow Lead Organizer
Today we are publishing the results of our Community Mental Health Survey in a report titled: Reflections & Refractions – Magnifying the Spectrum of Care for QTAPIs in Southern California.
You can check out the full report and our webpage here, which includes more information on all that I write about in this post. If you’re looking for something more bite-sized, read our one-pagers (Overall) and (Vulnerable Groups).
I came into the survey work in 2023 after data collection was complete and we were staring down one of the most monstrous google sheets I had ever seen. The next several months of data disaggregation and analysis were intense as we sorted through cleaning, coding, and analyzing 221 individual responses.
It often felt as though we were building the plane as we were flying it, arriving at each new phase with limited knowledge of the step by step process, but guided by our values and purpose in this project. I’ll admit that I sometimes adopted a bit of a fatalist attitude towards each of our next steps, imagining it to be the hardest one yet. However, slowly, piece by piece, the report came together. I have a surreal feeling now looking at the final completed report. What was once an accumulation of countless docs, sheets, notes, and to-do lists is now a full comprehensive PDF file. The following are some of my personal reflections as someone who was extensively involved in the project since 2023. I share them here with the hope that other folks in similar positions doing community based research may take away something useful or feel validated in similar struggles and accomplishments.
It’s worth noting that almost everyone who worked on this project was not a “traditional” researcher. We were, however, rich in lived experience. Folks demonstrated deep understanding of our own community, the humility to acknowledge that which we were unfamiliar with, and the drive to learn more. In sharing this, I hope other groups and collectives feel empowered to conduct research within their own communities in ways that feel values-aligned, creative, and subversive of traditional research norms.
Decision making throughout the survey writing and editing process was frankly agonizing. I felt an immense amount of responsibility to accurately represent participants’ experiences while also balancing the enormous load of information and need to condense things down. In a survey as personal as this one, I was hyper-aware that each of the 221 people who had taken the time to share their experiences with us were complex multidimensional humans with lives that ultimately cannot be fully synthesized into bullet points. Initially we aimed to create a 10-15 page report which in hindsight feels laughable. The final report is 30 pages (don’t worry we have one-pagers, see links at the top). Still, the amount of data we did not include for sake of readability is significant and points to the need for additional research, and particularly funding and resources to complete such a project. In the process of crafting the report, numerous big questions emerged:
How do we emphasize the clear unmet mental health needs present in our community while also naming the unique and meaningful ways folks have received care, particularly from each other?
How do we represent diverse desires to engage or not engage with the Medical Industrial Complex and/or western institutions in seeking care?
How do we collect and share this information in ways that move away from traditional exploitative research methods or perpetuate harmful narratives about our community?
How do we support readers in understanding themes and takeaways from our experiences without homogenizing us?
I don’t have the definitive answers to these, nor does the report, but I believe that we have offered a useful attempt in engaging with them and sharing folk’s experiences in a way that supports the nuance and depth needed in thinking about them.
Nearly a third of the report is dedicated towards uplifting results from various disaggregated groups. Disaggregating data was a key priority in this project as there’s truly not a lot out there on QTAPI community experiences specifically within mental health. Where we could disaggregate, we did. Where we could include insights with other intersecting identities(ie: low-income and TGNC), we did. Let this be a call to all who want to do any type of data work within an umbrella term like API or LGBTQ+, disaggregate it out, please. We cannot deconstruct and challenge monolithic understandings of our community without breaking down these labels.
There are parts of this project that I feel incredibly proud of – bringing in community members to support this work, paying them for their labor, and refusing to bend to certain research norms that felt exploitative or insufficient. And there are parts where I believe we fell short – a lack of respondents from various demographic groups, particularly folks who are already marginalized and invisibilized under the “API” label, limited opportunities for more rich qualitative responses, learning moments in the lack of tools we had to bring to quantitative analysis, and more. I hope those who read this report can understand what we were able to accomplish and what we were not, and not expect this to be the end all be all of research and resources about our community.
For some folks reading this report there may be notable lack of surprise in the findings. I think for many QTAPIs who have attempted to seek mental health care, they will not be shocked to read that yes indeed it is challenging! The aim of this report is that it provides a little something for everyone who comes looking. For service providers it may be tangible recommendations on how to show up better for those you are caring for. For cis and/or East Asian community members it may be a reminder of how we are catered towards more within “API” and “LGBTQ+” spaces, and a call to better support our South Asian, Southeast Asian, Pacific Islander, and TGNC siblings. For folks who experience harm and invisibilization under these labels, it may be an offering of connection with others who named experiences in our survey of not being seen in their identities. For researchers it may be a model for alternative methods of community based research that prioritizes autonomy and care for participants. For funders it may be a direct entry point into deepening investment into this work. (Shameless plug to support us here). Whatever you may take away from the report, I hope it opens conversations within your circles as it did for me and you turn those conversations into actionable steps towards caring for our community.
If you have questions, feedback, or would like for us to present these findings to your institution, organization, or at an event, please reach out to Nora (nora@moonbow.org) to get connected.
