Lived Experience Examined

Encampment in U District Park, 2021, photo credit: Josephine Ensign

The lived experience, the direct and unintentional (as in not stunt journalism) experience of homelessness, is increasingly used and prioritized in policy and program realms. While much of this is good, I think it needs to be examined more closely.

As someone with the lived experience of homelessness when I was a young adult in my then hometown of Richmond, Virginia, it is a concept that I wrestle with. What counts as lived experience, who decides what counts, and is lived experience something that automatically turns people into, as referred to by Pathway UK, experts by experience?

I find it encouraging that there is a growing understanding of the importance of people with the lived experience of homelessness needing to be included in real, not token, ways for more effective program planning and policy-making. An example of this locally is Marc Dones, a Black non-binary person with the lived experience of homelessness and mental illness (bipolar disorder), who was named the first director of the King County Homelessness Regional Authority. This week Marc announced that he is leaving his position. People with the lived experience of homelessness have long been employed as outreach workers, but not many have become leaders like Marc and Derrick Belgarde, an Indigenous man, and CEO of the Chief Seattle Club. Representation and visibility matter. They matter in terms of informing better programs and policies. They matter in terms of countering negative stereotyping and social exclusionary practices of people experiencing, or having experienced, homelessness.

A recurring issue in terms of people with the lived experience of homelessness working in some aspect of homelessness, especially in direct service work, is the danger of being retriggered, relapsing if clean and sober, not maintaining professional boundaries, and burning out. In trauma work, there is the phenomenon of trauma mastery, of a person being drawn to working with people in difficult situations similar to those they experienced and felt powerless to control. In trauma mastery, people, frequently unconsciously, return to sites of trauma wanting to ‘do it right’ this time, to have control and mastery of the situation. Too often, this sets people up for unreasonable expectations of themselves, co-workers, and their clients. As Jenn Adams, who works with vehicle residency outreach programs, told me, it takes years of support and even therapy to gain perspective on one’s own experience of homelessness. She points to mentors and work supervisors who check in with her, identify possible triggering situations, and help her maintain healthy boundaries in her direct service work.

In my discussion with Derrick Belgarde about the increased focus on people with the lived experience of homelessness, he said, “I’m a firm believer that lived experience should always lead in any field…The best ones are ones who can actually relate.” He followed this by talking about the fact that there is a spectrum of different types of homelessness that people experience. He says of these experiences, “They’re all traumatic and horrible and awful, but they’re all totally different, and I’m only an expert in one.” He added, “There needs to be more diversity in these decision-makings because they don’t think about that. I see a lot of the lived experience movement making grounds in homelessness work today, but a lot of them, I don’t think, come from the type of homelessness we’re trying to solve in the downtown core.”

The 2022 National Health Care for the Homeless Conference and Policy Symposium, billed as being held in Seattle and in-person for the first time since the pandemic, was held in the swanky Hyatt Regency Bellevue near a high-end shopping center at the beginning of May. The venue was ironic given the fact that Bellevue officials work hard, mainly through more aggressive policing and criminalization of homelessness, to keep the city sanitized, especially compared with Seattle.

I attended the conference and spoke with David Peery, a Miami, Florida, Black lawyer with the lived experience of homelessness during the Great Recession. David is the current co-chair of the National Health Care for the Homeless Council’s National Consumer Advisory Board (NCAB). I asked him if the NCAB folks have conversations about what ‘counts’ as someone with the lived experience of homelessness. He said that they follow a guideline of recent experience of homelessness within the last five years or longer ago if the person has stayed involved in direct homeless service provision, like being a peer outreach worker or in policy and advocacy work on homelessness. “A lot of times people who were homeless become judgmental about currently homeless people–unless they understand trauma-informed care,” he explained.

So while the lived experience of homelessness in homeless policy-making and programming is important, it should be more carefully examined and understood.

Mapping Health and Homelessness in Seattle

Pioneer Square, Seattle. Photo credit: Josephine Ensign

Although I love words and writing, there are many times when visual information is more effective at conveying complex ideas, facts, and emotions. That is why, for many years now, I have created digital storytelling videos about health and homelessness in Seattle. I use these videos in teaching and in my public scholarship. Recently, in a Stories-in-Motion online course I am taking through the StoryCenter, I created this StoryMap (free version for frugality and simplicity), “Skid Road: Stories of Homelessness in Seattle.” It is a work in progress (isn’t everything?), meaning I will add to it over time. It also happens to be more personal, weaving my story into the bigger story of homelessness in Seattle.

Writing Residencies and Retreats

Writing residencies and retreats are essential for maintaining and deepening my writing and creative life. If you have never taken one or you are planning to take time away to write, I’ll share my experience and advice for making the most of a residency or retreat.

First, finding and applying for your first writing residency can be a daunting endeavor. Word-of-mouth advice from other writers and artists you know is an excellent place to start. Many wonderful writing residencies welcome beginner, middling, and more established writers, so it is good to read their descriptions before deciding to apply. As with submissions of work to literary magazines, most writing residency programs require an application fee, although more places will waive the fee if you write and make your case. Look at any scholarships they may have available and see if you and your work are a good fit. Another effective way I go about learning about potential writing residency programs is to read the acknowledgment section of your favorite books/authors, especially if they relate to your own work.

Try not to despair if you aren’t accepted to your dream residency program the first (or second, or third) time you apply. When I became a serious writer, my dream writing residency was Hedgebrook on Whidby Island off the coast, where I live in Seattle. I applied four times before being accepted for a month-long residency in October 2014. It was an amazing and acutely difficult experience. Amazing in their being true to their practice of radical hospitality, difficult in that I had to commute there and back weekly to teach (not recommended). Plus, my elderly father died in the middle of my residency. I loved the combination of having my own cottage (Owl) and gathering each evening in the farmhouse to have delicious dinners with the other four to five writers in residence. Here is a photograph of me (taken by a writer/photographer in my cohort) from the bedroom window of my cabin.

This past year I had a three-week residency at the Virginia Center for the Creative Arts (VCCA) in the Blue Ridge Mountains of Virginia. VCCA is for artists of all kinds, so I was there with twenty or so writers, composers, sculptors, and visual artists. We each had our own room and a separate studio space in an old dairy barn. My studio, which is where I ended up writing and sleeping, was in the old milk room. One writing space feature was one wall of corkboard with pushpins. I used it to play around with the structure of my current book project. I loved being in community with a wide variety of artists, with a mixture of established, well-known ones and people just starting out. Here is a photograph of the VCCA barn/studio space. My milkbarn writing studio is in the left foreground.

I ended 2022 with another three-week writing residency closer to home at Centrum, in Port Townsend on the Olympic Peninsula. For this residency, I had a three-bedroom cabin at Fort Worden and quickly established one bedroom for reading/sleep, one for writing, and one for messy creative art projects: bliss. A deer slept outside my door every night. Beaches nearby for long walks and thinking through the chapter I was writing extended the bliss. The setting, combined with December Pacific Northwest darkness and snow, made for a more introspective experience which is what I needed.

Even before I ventured out into the writing residency waters, I took annual fall or winter week-long solo writing retreats at a rented cabin on the Salish Sea one Orcas Island north of Seattle. I continue that practice in an old log cabin with no internet or cellphone connection/reception. This setting is more conducive to deep-dive, generative writing or to immersing myself in a book manuscript for edits. The photo at the very top of this post is the view from my writing desk there.

Next up for me is one of these solo writing retreats on Orca Island, followed in late spring with a group writing retreat at Ghost Ranch, New Mexico.

Here is some advice I have (and what I remind myself of before my next residency or retreat):

  1. If at all possible, try to ease into and back out of your residency or retreat time. If you can add a buffer day before and after when you aren’t frantically working or writing (or taking care of loved ones, young and old) and try to make the travel to/from as pleasant as possible, that can enhance your overall experience.
  2. Grant yourself grace by following your body’s needs in terms of sleep, exercise, and food. Entering a writing residency or retreat space often requires some decompression time, at least a day, so don’t expect to accomplish a lot of writing that first day.
  3. Take and use a writing journal (separate from a personal journal) and write about your writing. For instance, I’ll write about a particular difficulty or decision-making I’m facing in my current writing project. Oftentimes, just by the act of writing, ideas and solutions occur to me.
  4. Formulate a basic intention for your residency or retreat ahead of time but try to avoid drafting overly ambitious, anxiety (and guilt) producing to-do lists.
  5. Get to know your surroundings by taking long walks and exploring new places. My own rhythm on residencies and retreats is to write all morning, pack a light lunch and go for a hike (oftentimes thinking through what I’ve written and what to write next), and return to some ‘light writing’ or editing or scribbling out ideas before bed.

Writing Life In Review

My former late and great writing mentor, Waverly Fitzgerald, had those of us in her Shipping Group (a writing support and accountability group) do an end-of-year review of our writing. Being an accountability group focused on ‘shipping’ pieces of writing and writing-related grant applications, it ended up being more of a tally sheet: useful when starting out on my writing life. But I soon craved a deeper, more holistic approach to an annual check-in with myself about more aspects of my writing life. Many examples and templates are available, but I’ve settled into the following that I developed based on many of them. In case you find it helpful, here are my categories, including a few examples from my completed 2022 writing life in review:

Creative Writing: Blog posts, Way Home book proposal, and completed seven chapters

Writing/work/other: I wrote/submitted five writing residency applications and three grant submissions to support my Skid Road/Way Home oral history interviews.

Accomplishments: My Skid Road book was named a finalist for the Washington State Book Award (thank you!). University of Washington Press buying the paperback rights for my Skid Road book and publishing it in February 2023 (paperback cover above). Book contract from John Hopkins University Press for my next book manuscript, working title: Way Home: Ways Out of Homelessness.

What got left behind: My answer to this is personal and related to my ‘day job,’ so I’ll skip it here—but I encourage you to dig deep on this one. Some things deserve to be left behind, and some you may want to recover.

How can I make my writing life easier? As mentioned above, my answer to this is personal and related to my day job… But try to be honest with yourself.

How did I spend my time in terms of writing? Except for day job drama/trauma, I was focused on writing my Way Home book manuscript…

How did writing make me feel? Encouraged and hopeful–this is an important question, so take your time.

Difficult writing moments: As above, all related to my day job, which I choose (for now) not to share. Again, be honest with yourself when answering this question. And remember that ‘difficult’ is not necessarily a bad thing. But some ‘difficult’ moments are righteously bad and deserve to be left behind and not repeated…

Favorite writing moments: Reading the opening excerpt of a recently completed chapter for my Way Home manuscript at the Virginia Center for the Creative Arts (VCCA) for the other artist and writer fellows and knowing that it is powerful.

How do I want my writing life to make me feel this year (2023)? Excited, engaged, challenged, fulfilled, and hopeful.

Areas of focus: Finish a good, solid draft of my Way Home book manuscript for delivery to JHU Press. Continue expanding my Skid Road/Way Home oral history interviews to support my book.

Schedule shifts and necessary ingredients to be successful with my area of focus this year: continue to prioritize my writing every day as necessary to complete my book manuscript. (also, one related to my day job and the leaving behind category above…)

Happy writing and New Year to all of you.

Way Home Outtakes: The Meaning of Home

Tuna came one day, scratched at our door, begged for food, and never went away.

The Meaning of Home Photo credit: Josephine Ensign/2016

Tuna came one day, scratched at our door, begged for food, and never went away.

Home is where the cat is.

–male resident of Tent City III

Home is never permanent, but I know it is where I find safety.

–female resident of Tent City III

…home is a place one belongs to, a place of safety and a gathering point for reestablishing social connection.

–Madeline Ostrander, At Home on an Unruly Planet: Finding Refuge on a Changed Earth (p. 79)

Think of words that describe ‘home’ to you. Nouns, verbs, whatever words come to mind. Write them down. Circle the top five that are the most important. Now, pretend you live through a series of unfortunate events: loss of a job, fire, pandemic, and insurmountable medical debt. You lose one important item or word from your list for each of these four events. Say goodbye to each one as you cross it off. You are left with only one aspect of home that you carry with you into homelessness. For many people, that remaining aspect of home is family, beloved pets, safety, or privacy. For many people who actually experience homelessness, they are forced to give up everything that matters to them, everything that represents home, including a sense of belonging, of community, of a place to nurture and maintain health. Of dignity and self-determination. For other people experiencing homelessness, they have never had a true home, or at least a safe, secure home, to give up, thus making their exit from homelessness that much more difficult. Of course, the causes of homelessness are much more complex than just a series of unfortunate events. This list of events is based in reality since all of the events do contribute to homelessness. Not enough people know that spiraling medical debt is a leading cause of homelessness in the US, a factor unheard of among our industrialized county peers due to our profit-driven healthcare system.[i] [ii] [iii]

This meaning of home exercise, although incomplete and imprecise, can help people discern the difference between a house and a home. A home is much more than a house, a shelter. This exercise can help people realize some degree of what homeless people have had to give up and what they can regain with enough community support. Looking at success stories and people’s stories of what contributed to their experience of and exit from homelessness can help deepen our understanding of this complex issue. Stories from people with lived experience help inform us as individuals and as a society as to how we can build on individual and community strengths, on lived experience insights, to greatly reduce homelessness, if not outright solve it.

[i] Jessica E. Bielenberg et al., “Presence of Any Medical Debt Associated With Two Additional Years of Homelessness in a Seattle Sample,” Inquiry: A Journal of Medical Care Organization, Provision and Financing 57 (December 2020): 46958020923535,

[ii], “Medical Debt and Homelessness,” Public Health Post, accessed July 18, 2022,

[iii] Jessica Lipscomb, “Medical Debt Biggest Cause of South Florida Homelessness, Survey Says,” Miami New Times, accessed October 20, 2022,

Note: This is based on results from my ongoing series of community-based “The Meaning of Home” workshops I have done with a variety of groups, including residents of Tent City III, high schoolers, faculty members, graduate students, and attendees at writing workshops. See more of this work here.

Way Home Outtakes: Consider the Shopping Cart

Over dinner recently, my husband asked me if I was still writing blog posts. I replied, “No, not really.” When he asked me why not, I recounted how I had started writing this Medical Margins blog back in 2010 as I was processing my elderly father’s final illness and the insanity of the US healthcare system, especially related to end-of-life care. In my blog, I then moved on to trying to rekindle a passion for the rather problematic (to me) profession of nursing. Then, I became interested in the health humanities and the somewhat insular academic world of narrative medicine. And, always, homelessness. Fast-forward to today, and my writing time and energies go towards writing books on homelessness and health.

City Hall Park, Seattle. June 25, 2022. Photo credit: Josephine Ensign

I am a part-time, nine-month employee and professor. I live for my summers off now when I have uninterrupted time to write and be a grandmother. This past summer, I made good writing progress on my next book, tentatively titled Way Home, about the contemporary landscape of homelessness in Seattle and King County. Refining and tightening my storytelling approach to writing (with terrific assistance from an editor), I edit out passages I might love but which do not pass the “So what?” test. I keep these darlings in a Word file titled “Extra.”

COVID caught up with me this summer, along with a bad bout of COVID rebound, and yet I pushed myself to continue writing. Some of these fever-induced passages ended up in the “Extra” file. Here is one I like, although it most likely will not make it into the final book manuscript. The photograph, however, likely will.

Consider the shopping cart. Constructed of wire and plastic and supported by four wheels, the cart’s purpose is to carry store merchandise before and after purchase. The shopping cart, developed during the Great Depression by an American man for use in grocery stores by housewives, becoming super-sized and non-gendered, an exquisite symbol of capitalism. The shopping cart, appropriated by people experiencing homelessness, serving as container and conveyance for their remaining belongings, a somber symbol of the fallout from late capitalism.

Nurses on the frontlines of behavioral health

Sisters of Providence circa 1860

Long before Washington became a state, the first official caregivers of people with mental health problems were immigrant nurses from Montreal. Often overlooked and forgotten, the Catholic Sisters of Charity of Providence opened “St. John’s Lunatic Asylum” near Fort Vancouver in 1861. Caring for the mentally ill was part of their charitable and religious mission.  

Today, nurses remain the largest providers of behavioral health treatment. Giving compassionate, quality care to people struggling with mental illness and substance use disorders, mental health nurses assume that families, friends, and others can no longer provide. Yet, they are consistently underpaid.   

In 1862, when the Washington Territorial Legislature awarded the Sisters a three-year contract to provide inpatient care for the mentally ill, it contracted to pay $8 per person per week. The Sisters took in private-pay patients because the government funding was so low.

Despite the low payment, the Sisters offered high-quality care. A notable component of the treatment was careful observation, helping prevent suicide or other harmful behaviors.  Consistent with prevailing treatment recommendations that a good environment would restore the mind, the Sisters offered housing in a beautiful, healthy locale.

Visiting St. John’s in 1863, Territorial Governor William Pickering was satisfied with the Sisters’ care; however, the Territory failed to make payments. The following year, the Territory made partial payments, offering devalued paper greenbacks worth only 50 to 80% of face value instead of the coin currency that Mother Joseph, the Superior, desired. The Sisters’ bill remained unpaid by the Territorial Legislature until 1872.  

Despite the lack of payment, the Sisters worked under the contract until 1866, when the Territory awarded the contract to lower bidders, a father and son partnership in Monticello. They transferred patients to the hastily built asylum lacking any nurses or physicians. Conditions at the Monticello asylum raised cries of alarm. An inspection revealed a “shameful negligence of duty” toward a female patient who had become pregnant. Patients lived in filth and standing water.

In 1869, the acclaimed nurse and advocate for the mentally ill, Dorothea L. Dix, visited our region. Dix spearheaded the opening of state-supported mental hospitals across the U.S. and Europe, using advocacy and her detailed first-hand documentation of asylum conditions. Learning of conditions at Monticello, she urged the Governor to remove the patients from Monticello. Worried that bad publicity could detract from the status of the new territory, the Legislature determined to open a permanent public institution with a resident physician. Later known as Western State Hospital, the new institution opened in 1871. Due to a lack of adequate state support, safe staffing, infrastructure maintenance, and quality of patient care, Western State lost federal certification and funding support in 2018.

Our historical experiences highlight essential questions about who will pay for the necessary treatment that our mentally ill brothers and sisters require. Privately funded initiatives, religious organizations, and charities can provide aid, but their goodwill and funding resources are limited. In 2019, Washington legislators approved legislation to improve our mental health system.

With the combination of the protracted COVID-19 pandemic, a worsening mental health crisis, especially for our young people, and half of the nurse workforce nationally burned out and considering quitting, we need to pay and support our nurses and our future nurses. From workplace violence prevention, safe nurse staffing laws, to pay parity for psychiatric nurse practitioners (SB 5222), we should learn from the past to ensure a better present and future.


Josephine Ensign is a professor of nursing at the University of Washington in Seattle. She is the author of Skid Road: On the Frontier of Health and Homelessness in an American City.

Mary K. Fleck is a former trial lawyer.  She is writing a book on the history of the Sisters of Providence in the Pacific Northwest.

Listening to Seattle’s Skid Road

Encampment below Harborview Medical Center, photo credit: Josephine Ensign, 2021

Amidst the raging debates about what to do about homelessness in Seattle and King County, the voices of people who work—and live—at the intersection of health and homelessness are drowned out. That needs to change if we hope to make any real progress towards solving homelessness and suffering in our city and neighborhood. With the aim of increasing a diversity of voices and perspectives on homelessness, I’m happy to share our Reader’s Theater script, “Listening to Seattle’s Skid Road: Testimony from the Edge.”

Join us for a (free, virtual) Reader’s Theater and hear the voices of unhoused individuals, caregivers, and more, as we consider the toll that homelessness takes on our community—as well as amplifying local examples of innovative solutions.

Thursday, November 18, 6:30-8 pm (PST), University of Washington Libraries.

“Listening to Seattle’s Skid Road: Testimony from the Edge” was written by Josephine Ensign, DrPH, professor UW School of Nursing; and Lorraine McConaghy, Ph.D., public historian; with assistance from Lisa Oberg, librarian, UW Special Collections. The script is based on interviews conducted by Josephine Ensign with people working—and living—at the intersection of health and homelessness in Seattle, as well as Josephine Ensign’s recent book, Skid Road: On the Frontier of Health and Homelessness in an American City (Johns Hopkins University Press). Funding support for the Reader’s Theater script came from a 4Culture Heritage Award.

Registration (again, free and virtual event):!%20You%20are%20invited%20to%20join%20a%20meeting%3A%20Skid%20Road%20Reader%27s%20Theater.%20After%20registering%2C%20you%20will%20receive%20a%20confirmation%20email%20about%20joining%20the%20meeting.

This link is for just for the registration link:

And here is the pdf of the Reader’s Theater script:

Like Riding a Bicycle: Burnout Prevention

Everyone, it seems, is burned out these days. Frontline nurses, doctors, public health workers, and other healthcare providers who are weathering yet another vicious turn in the COVID-19 pandemic. Frontline service providers, short-staffed and short supplied. Parents struggling to parent well amidst the crazy-making politicized strife over a safe return of their children to in-person teaching at schools. Homeless and near homeless people trying to survive and maintain hope as eviction moratoriums end. Climate refugees and Afghan refugees. The list goes on.

How to manage the massive burnout we’re almost all feeling?

Having survived some rather spectacular professional and personal life burnouts in my life, and feeling it again as I face yet another academic year full of ‘pivots and uncertainties’ (words I now despise), with the responsibility to teach future nurses about our besieged public health and broken healthcare systems, burnout prevention is high on my list of priorities.

Cutting through the growing piles of research studies on burnout and its second cousins of moral distress , secondary trauma, vicarious trauma, and compassion fatigue, I am drawn back to two main resources that I find most helpful. The first resource is the book by Seattle-area social worker Laura van Dernoot Lipsky with Connie Burk, Trauma Stewardship: An Everyday Guide for Caring for Self While Caring for Others. I re-read sections of this book when I am beginning to feel ‘crispy,’ on the verge of burning out. I especially appreciate her inclusion of systematic oppression, trauma-informed care, clear explanation of trauma mastery, all combined with liberal use of appropriate humor. For a good introduction to her and her work, take a look at this TEDx talk from 2015 at the Washington Correction Center for Women, “Beyond the Cliff.”

The second resource I use and recommend to my students is the work of Rachel Naomi Remen, MD and her Heart Journal practice. She encourages asking yourself at the end of the day, “What surprised me today? What moved me or touched my heart today? What inspired me today?” Although I am an early morning journal writer, I try to incorporate at least some of these questions into my reflective writing, especially when I know I’m at risk of burning out.

As part of my Skid Road project on health and homelessness, I had the privilege of conducting a series of oral history interviews with thirty-six people working—and sometimes having lived—at the intersection of health and homelessness in Seattle. One of the questions I asked the interviewees was, “What advice do you have for people in terms of burnout prevention?” I loved the wide variety of responses to this question. Krystal Koop, MSW, replied, “And that’s another thing with burnout. You are going to get burned out every once in a while, and that’s okay. Don’t beat yourself up about it. It’s okay.”

But my favorite response to this question was from Benjamin Danielson, MD. He said, “Burnout is an interesting thing. I think about life balance the way I think about bicycle balance. If you are sitting still on a bicycle and you try to balance, you fall over. So keeping everything exactly balanced in a moment is pretty unlikely. But a bicycle in movement over time – the balance is very much there. It’s important to not examine just one moment and know whether everything is perfectly balanced, but it is important to keep track of the things that are important to you, and the people that you love and love you, and stay connected to those things.”

Pandemically Published: Skid Road

Welcome to the strange new world! When I first conceived of and began research for what became my newest book, Skid Road: On the Frontier of Health and Homelessness in an American City, I knew I was in for a lot of hard work and more than a few surprises. What I didn’t know was that it would take over five years to complete the research and more than two years to write and see though to publication. And that I would have it published during a prolonged pandemic. But, needs must, an archaic yet useful (mostly British) way of acknowledging an unfortunate reality and continuing on. Thank you to Johns Hopkins University Press for publishing this book. They are leaders in public health and the history of medicine, and that, combined with the fact that I am a JHU Bloomberg School of Public Health alum, make them one of my dream publishers.

Helping to launch this book into the world will be a much different experience than for my previous two books, back when I was able to travel and do in-person book events. I am okay with that, especially after realizing the benefits of virtual book talks and events as both a participant and as a speaker. Access to a much wider audience, including people with mobility or health issues. Much better for the environment. Suited to the introvert that I am. I look forward to virtual book events and will provide updates and links to events (all free, of course) under my Events page on this website.