Greetings all!
If you’ve read Grace is a Pre-Existing Condition, you may have noticed me thanking my research assistant, Hailey Joy Scandrette, for her crucial contributions to the book.
Hailey is an author, advocate, and independent researcher, and I thought you might like to know more about her! She kindly agreed to answer a few interview questions to share with my readers. Yesterday, I posted Part I of our interview, in which she shared a bit about herself, her journey with chronic illness, what things are like in San Francisco right now, and what’s life-giving during this season:
Here’s Part II of my interview with Hailey, in which she reflects on research, writing, faith, and the need for a revolution in our cultural values to center the kinds of community we are all longing for.
You can also read more of Hailey’s writing at haileyjs.wordpress.com, and/or join me in supporting her work at patreon.com/haileyjoy
I initially reached out to you to be my research assistant for Grace is a Pre-Existing Condition because I saw you were considering creating a free guide to discussions around healthcare. Can you share a bit about the free justice resource guides you've made?
In June of 2018, my social media feeds were flooded with articles about the ongoing immigration crisis, asylum seekers from Central America, and family separation at the border. I have long been concerned by the injustice present in the United States’ immigration system and was deeply upset by both the reports from the border and the rhetoric about immigrants and asylum seekers circulating social media at the time. I also saw a lot of confusion about what sources could be trusted, misunderstandings of the legal processes in play, and often a lack of background information and historical context. Because I studied history, a huge part of my college education was focused on learning good research habits and practices. I didn’t have a lot of resources or money to donate to on-the-ground organizations, but helping others to educate themselves with reliable, easily-accessible sources felt like a small thing I could do to help. So I started creating the first immigration justice resource guide.
“I try to find a balance between remaining focused on finding reliable data and information, while also allowing myself to be impacted by the stories of human suffering and hardship that are impossible to avoid when learning about our healthcare system.”
I began by finding the answers to questions like “What is Asylum?,” “Why are People Leaving the Northern Triangle?,” “How Long Does it Take to Immigrate Legally?” and “What Rights do Immigrants Have in The U.S.?” And eventually added sections on current issues in the news, personal stories from immigrants and asylum seekers, organizations to follow and support, and sources about the history of US immigration policy and US intervention in Latin America and its connection to present-day asylum-seeking. Although I wanted to maintain a high level of reliability in the resources I gathered, I also wanted them to be accessible to a non-academic audience and free to read. I used mediabiasfactcheck.com to check my sources and only included articles from sources with a “high” or “very high” factual reporting rating. I released the guide in July 2018, and continued to update it until the following spring. People in my circles online responded positively and shared with their friends.
I started thinking about other topics that people might want to educate themselves on, but might not know where to start. I brainstormed a list of possible topics and shared it on Facebook to ask friends which topic they’d most like to see a guide on. The majority voted for a healthcare guide, so I began drafting my research questions. This is when David reached out to see if I’d be interested in being his research assistant for Grace Is a Pre-Existing Condition (my answer was an enthusiastic “yes!”).
Meanwhile, I continued to update and share the immigration justice resource guide as news continued to roll-in. As I continued to work on the guide I began getting the question “Is it for Christians?” from my Christian friends and acquaintances. At first I’d laugh a little and say, “Well, I think Christians are just as capable of reading news articles, data, and fact sheets as anyone else, so… yes?” But after a while I began to think that maybe there was a need for another resource guide that specifically used Christian rhetoric and theological framework to discuss immigration. So, in March of 2019, I released a shorter guide the goal of which was to aid Christians who were concerned by reports from the border in developing a faith-based understanding of immigration justice. For fun, I also made a women’s history month mini-guide, highlighting impactful women that I hadn’t had the opportunity to learn about in school (particularly women of color and LGBT women).
As I worked on research for Grace is a Pre-Existing Condition, I filed away articles and reports that might be useful in a mental healthcare subsection of my intended healthcare guide, but every time I sat down to work on the guide I felt overwhelmed. Research on topics where injustice is a deeply rooted issue requires a lot of emotional effort. I try to find a balance between remaining focused on finding reliable data and information, while also allowing myself to be impacted by the stories of human suffering and hardship that are impossible to avoid when learning about our healthcare system. At this time I was struggling with my own mental health, and decided I could only handle doing one healthcare research project at a time. Hypothetically, I would like to return to and finish a healthcare resource guide, but I am in the process of trying to determine what projects I want to invest in for my personal growth and goals as a writer.
Is there something you learned while doing the research for Grace is a Pre-Existing Condition that surprised you or that has particularly stuck with you? Why does that particular piece of research stand out to you?
The medical debt numbers, especially when contrasted with the salaries of health insurance CEOs, really stood out to me. I think because together those numbers really illustrate what I see as the fundamental problem of the US healthcare system, which is that it’s a for-profit industry, within which it is often impossible to really prioritize people over monetary gain. When people have to go into debt for medical care they need to survive, I can’t see that as anything other than evidence that the system is failing. If a system can’t serve the people who need it most, what good is it?
(Note from David: If these numbers jumped out at you too, consider donating to RIP Medical Debt — and right now, you can order a signed copy of either (or both!) of my books and the proceeds will help forgive medical debt through this organization. Just send me a message to request a signed copy.)
You've shared before that you grew up in a very particular kind of Christian household, but that you've had trouble finding a faith community outside of that household where you feel like you fit in. Could you talk a bit about that? What was it like working on a book with a very church-y audience? Do you think Grace is a Pre-Existing Condition would be a good read for someone who, like you, isn't quite sure how they feel about "The Church"?
Although I didn’t grow up in a traditional Church setting, I did grow up in a household with a very deep emphasis on faith, particularly applied Christian faith, questions of how to follow Jesus in everyday life were part of daily conversations in my family. For most of my life my parents built community around the idea of practicing the way of Jesus. As a middle schooler and teenager I participated in workshops dedicated to exploring themes from Jesus’ life such as justice, prayer, and creativity. There were always adults around who were engaging in faith in similar ways to my family, but most of them didn’t start having kids until I was about 12. So, a peer faith group isn’t something I’d ever had.
“Regardless of my own complicated relationship with faith, I feel strongly that informed, compassionate conversations around mental illness are deeply needed in Christian spaces.”
When I got to college I tried out a campus ministry and found that I struggled to feel like I was connecting. It felt like many of my peers in that group had a common language, common assumptions and a shorthand that I didn’t speak. I didn’t know how to bring the conversational, questions-encouraged mentality I’d been brought up with into that space without making myself feel even more like an outsider. I was lonely in college, I didn’t want to rock the boat, I just wanted to find my people. I stopped going after one semester, and the following year started an online progressive Christian magazine for young people that lasted about 2 years. When I became disabled by multiple chronic illnesses about 4 years ago, I was catapulted into a new phase of faith deconstruction, which I am still working through, which additionally complicates my search for community.
However, regardless of my own complicated relationship with faith, I feel strongly that informed, compassionate conversations around mental illness are deeply needed in Christian spaces, so I was excited to work on this book. Mental illness runs on both sides of my family, so I know the importance of talking about it, and the need for good frameworks for that conversation in Christian spaces. As the research assistant I honestly didn’t think too much about the audience. I’d read blog posts David had written about faith and mental health and I believed in what he had to say, so I focused on doing the best research I could. I do think that Grace is a Pre-Existing Condition could certainly appeal to people who are unsure of their relationship to “The Church.” I know many people who are passionate about the intersection of theology and systemic justice (where I think this book sits quite nicely) regardless of their comfort with religious institutions. I also think this book could be helpful in encouraging productive conversations about mental health and mental healthcare with friends or relatives who are comfortably situated in a more traditional church culture, which is very valuable.
This isn't the first book project you've been a part of -- in fact, your writing has been published in two books by your parents, Mark and Lisa Scandrette. What have you learned about yourself as a writer and a researcher by working on these projects?
This is true, I have sections in both Free: Spending Your Time and Money on What Matters Most, and Belonging and Becoming: Creating A Thriving Family Culture. I wrote my contributions for both of these while I was in college, so my memories of working on them are mixed in with a blur of academic paper-writing and it’s hard to remember much about the process. However, writing reflections in general (as I did in these books, and as I do on my blog) has definitely taught me a lot about myself as a writer. The actual writing process comes fairly easily to me when I am writing about my own experiences, however, I tend to suffer a bit of imposter syndrome and it’s been a learning curve to trust that what I want to say could be useful or impactful to other people. I think often our own thoughts, insights, and experiences can seem really obvious and boring to us because they live in our brains all the time, but still might have something new to offer someone else. I have learned that leaning into vulnerability in these situations, even if you’re not sure you’re saying anything new or important, can provide an opportunity to connect with other people who have felt or thought similarly, which can leave both me and my readers feeling less alone.
I really enjoy combining reflection and research when it's appropriate. I think people underestimate the extent to which research and data are just a different form of storytelling. One thing I like about Grace Is a Pre-Existing Condition is its use of both research and personal experience to support the story it seeks to tell.
Focusing on writing reflections and research for so long has also taught me that, while I enjoy these things, I also crave writing that allows me to be more creatively engaged, which is something I am focusing on exploring this year.
I'm a college chaplain and a campus minister. When we first met, you were about to graduate from college and you were helping facilitate a network of young adults reflecting on matters of spirituality, meaning, and life. What do you think college students and young adults are searching for in terms of a community of faith and meaning?
I want to start by saying that I think that for many young adults who are no longer in college there’s a real lack of opportunity for community overall. Our culture prioritizes work in such a way that for many people their workplace is their primary source of communal social interaction. As someone who can’t currently undertake traditional work due to disability, and who hasn’t yet found a faith community I fit into, the lack of other sources of community is discouraging.
I think people my age and younger long for spaces where they can cultivate connection and vulnerability, as well as put theory into practice. Most young people I know are passionate about social and environmental issues and want to make a positive impact in the world. But it is hard to do this alone, and it’s hard to do without safe places to learn, make mistakes, and grow with others. I think that community structured around common values, whether religious or otherwise, can be a powerful thing, especially when said community is committed to being present and cultivating growth both within itself and in the world around it.
“I believe that humans are wired for community, but we may need a revolution in our cultural values to prioritize the compassionate, growth-centered, deeply connective community that I and many of my peers long for.”