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.

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.

Not Playing Indian

November is both Native American Heritage Month and National Homeless Youth Awareness Month. This week (November 15-22, 2020) is Hunger and Homelessness Awareness Week. Especially this year, in the midst of the pandemic disproportionately affecting Native Americans and other BIPOC people, rising joblessness, increasing evictions (despite CDC and other anti-eviction mandates), increasing domestic violence, increasing social isolation and depression among our teens/young adults, increased attention and action related to these social and health issues are important. There are many things we can all do to help. Here is my list of actions for you and your family members to consider doing—not only during November:

1. Become better informed about these national and local issues by reading through the resources included in the links above.

2. Read more books by Native Americans. My current favorites include Braiding Sweetgrass: Indigenous Wisdom, Scientific Knowledge, and the Teachings of Plants by Robin Wall Kimmerer; There There by Tommy Orange, and An Indigenous Peoples’ History of the United States by Roxanne Dunbar-Ortiz.

3. Support Native American/Indigenous owned and run social service programs, such as Chief Seattle here in Seattle. They have health and social services (including supportive housing) for urban Native Americans/Native Alaskans/Indigenous people experiencing homelessness.

4. Support Native American/Indigenous owned and run arts and crafts stores, such as the “Inspired Natives, Not Native Inspired” Eighth Generation located in Pike Place Market, Seattle.

5. Support the expansion of school nurses and mental health counselors in all of our schools.

6. Support upstream policy efforts to prevent homelessness and hunger in our country. National Low Income Housing Coalition is one source of information on these issues. Likewise, for health and homelessness national policy issues, the National Health Care for the Homeless Council is an excellent resource.

Here is a digital storytelling video I made this summer in a StoryCenter workshop. “Honor Their Stories” is about my experience researching and writing a book chapter (in Skid Road: On the Frontier of Health and Homelessness in an American City, JHU Press, 2021) on Kikisoblu, also known as Princess Angeline, who was the daughter of Chief Seattle for whom Seattle is named. In this video, I explore the ethical issues I encountered as a white woman trying to understand more of the life, and death, of a Native American woman.

Start with Compassion

The unique Little Free Libraries around Seattle, including the one pictured here, are wonderful community assets. In a Little Free Library near my home I found, read, and returned a gorgeous hand-made journal intentionally left there by an older woman who is homeless. She considers these journals to be her published memoirs. I thank her for sharing her artistic and writerly talents, as well as her astute insights into the “homelessness industrial complex” of Seattle. Reading her journal provided me with a window into her world.

I admire the work of Seattle architect Rex Holbein, his daughter Jenn LaFreniere, and other people at the Seattle non-profit Facing Homelessness who help match homeless people, including homeless mothers with small children, with homeowners who have built backyard accessory dwellings for them. Called the “Block Project,” it has the motto “Yes, in my backyard,” as opposed to the usual “not in my backyard” NIMBY-ism. It requires the buy-in of people in the neighborhood, or at least the city block, where a formerly homeless person will live. Their aim is to have a homeless person or family supported by an entire community, recognizing that homelessness is not just “houselessness” as many advocates now claim. Homelessness is about the lack of interpersonal affiliations, connections, and supports that make a house a home. Although this is not something I can see myself doing anytime soon, I like that the Block Project and Facing Homelessness exist in my city. It gives me hope that we can become better versions of ourselves, a better version of our city.

In this I am reminded of the words of Rev. Craig Rennebohm, who began a still-thriving street-based mental health outreach program for homeless people in Seattle. I had the pleasure of interviewing him for the oral history component of my Skid Road project in February 2016. He said, “I realized that if we can’t bring some level of peace to our neighbors on the streets, in our communities, there’s no hope for us being a more peaceable presence in the world. We need to learn how to be peaceable and healing at the most fundamental levels of our common life–as families, as neighbors, as cities and towns–communities.”

Here’s to a peaceable and healing and compassionate year ahead.

Homelessness Started Two Years Ago

Richmond, Virginia 1986. Covering up Homelessness

An important news update brought to you by President Trump: Homelessness started two years ago in our country and it is the fault of liberal states, of liberal people in sanctuary cities such as Los Angeles, San Fransisco, and New York. And Seattle. Oh yes, and our president claims that it is the fault of homeless people themselves. “They like living that way.”

“We’ve never had this in our lives,” he said in a FOX news interview with Tucker Carlson last week. When asked by Carlson what we should do about it Trump responded, “Take the (homeless) people and do something.” Presumably by that, he means clear homeless people away, dispose of them out of sight. Perhaps in detention centers along the US-Mexican border. Or behind rows of doors from torn-down affordable urban housing as in the photograph above from my hometown of Richmond, Virginia. I took that photograph in 1986 on my way to my work as a nurse with homeless people.

Trump pointed to his clearing out of homeless people in Washington, DC when he moved into the White House. He claims he told people that he had leaders of the world coming to see him, the President of the United States, and “they can’t be looking at that” referring to visible poverty and homelessness in our nation’s capital.

That this revisionist history, these lies, would be laughably absurd in a different context, a different time—perhaps sometime in our hopefully brighter future—is one thing. But that wistful and wishful thinking only highlights the current dangers in this rhetoric. People believe what Trump and Carlson say. People act on what Trump and Carlson say. “Take the (homeless) people and do something” leads to vigilantism and physical attacks (and killings) against people who are or who “look homeless.”

Swamp Lessons

What does a swamp possibly have to do with health, homelessness, and community health nursing?

Quite a lot as it turns out. I have spent the past year exploring possible answers to this question, as well as many other “swamp questions” and “swamp lessons.” It has been—and continues to be— a weekly deep-dive radical self-care sort of exercise. At the end of each week, I walk to the closest swamp or swamp-like spot of nature, wherever I am in the world, and I sit, observe, and write reflective entries into my swamp journal.

While I have traveled outside of Seattle fairly frequently and lived part of the past year in the UK, when I am at home I always walk to Yesler Swamp on Union Bay in Lake Washington. The photographs included in this post are from my Yesler Swamp walks over the past few weeks.

My weekly practice of swamp walks has been an important source of grounding for me (yes, pun intended since swamps are, at best, ‘quaking ground’) as I have navigated the interesting murky waters of being a leader of the community-campus Doorway Project. The politics involved with this community health project have been considerable. Subtext. Subterfuge. Unnecessary dramas. Wanting to shout “Bullshit!” in so many meetings I have lost count. Take it all back to the swamp and sit with it and see my way through.

Also, my weekly swamp walks and reflections have helped me wade through the new-to-me experience of dealing with the emotional weightiness of developing empathy with ‘historical figures’ such as “insane paupers,” homeless people I have come to know (at least at some level) through my research and writing of my current book project, Skid Road. Who knew (not me) that homeless people long dead could be just as real and deserving of compassion and empathy as those still living?

They Must Move

“Crusade to be begun against Shantytown. Health Board says its sanitary condition is such that it must be cleaned out.”

Sound familiar? Here in Seattle, perhaps substitute “unsanctioned tent encampments” or “tent cities” or even “tiny house villages” for “Shantytown” and it would be all too familiar.

Yet the “They Must Move” headline is from the front page of the Seattle Daily Times on August 16, 1899. The Shantytown in this article was located along a similar stretch of Seattle waterfront as the Depression Era Shantytown known as Hooverville depicted in the photo montage above. The photo is meant to depict an irate Seattle housewife living on Beacon Hill. She is pointing at the shacks below her and insisting they be cleaned up and burned down (which they eventually were). I have as yet been unable to find the specific source/photo credit for this photo but am told it is from the Seattle Times from the 1930s.

Finger-pointing and scapegoating are juvenile, divisive, and destructive. By anyone in any era. And when they are done by supposedly professional media people it is especially disheartening. Instead of opening up constructive and civic discourse on difficult, wicked problems like homelessness, these actions are counterproductive. I could finger-point here in this blog post, but I will refrain.

Empathy Deficit

Tactile Object 2, 1969, Paul Neagu. The Tate Modern Museum, London

Someone asked me recently at a public forum if empathy has been diminishing among nurses (and nursing students). Excellent question. In my answer, I pointed out that empathy is being sorely tried and spread quite thin in our country currently. That goes for everyone, including nurses and physicians, and students and teachers. And writers.

The question was in response to my reading of excerpts of my essay “Walk in My Shoes” included in my recently published book Soul Stories: Voices from the Margins (San Fransisco: The University of California Medical Humanities Press, 2018). In “Walk in My Shoes” I explore empathy, including if it is always a good thing. Empathy is “feeling with” as opposed to the more distancing “feeling for” of sympathy.

We all tend to be more empathetic to people who are similar to us. Climbing the socioeconomic ladder can diminish our empathy for people less well off than ourselves. It becomes easier to blame the poor and the homeless for their situations. Experiencing our own significant traumas can make us more empathetic to people who have experienced similar traumas—but only if we have had the resources to heal sufficiently.

In The Empathy Exams, Leslie Jamison describes empathy as “a penetration, a kind of travel. It suggests you enter another person’s pain as you’d enter another country, through immigration and customs, border crossing by way of query: What grows where you are? What are the laws? What animals graze here?” p. 6

I like this description because it includes the cognitive dissonance, the discomforting disorientation—and humility—that come with travel and with empathy as travel. It also highlights the healthy curiosity required of successful travel, successful empathy. Empathy takes work to gain and to maintain.

Empathy cannot be taught but it can be modeled and it can be nurtured.

How the Poor (and Homeless) Die

Homeless encampment, Edinburgh cemetery

A powerful and classic (yet too little known) social justice writing by George Orwell is his autobiographical essay “How the Poor Die.” It should be required reading for all nursing and other health science students as it eloquently describes the experience of death and dying for poor and homeless people. Although the essay is based on his experiences, first as a poor patient on a public ward of a Paris hospital in 1929, and then back in England and Scotland (Glasgow) towards the end of WWII, there are echoes of truths in his observations that are relevant today. 

One of the most poignant parts of the essay describes “old numero 57” (patients were numbered, not named) lying—and dying—on a cot in the open ward next to Orwell. He writes, “They are treated like animals. They die alone, their organs already marked for a bottle in the museum, their bodies designated for dissection.” 

Orwell’s essay came back to me yesterday as I went in search of pauper’s grave sites in Edinburgh. From my research, it seems that there are thousands upon thousands of pauper’s graves in many of the town’s oldest remaining church cemeteries—such as St Cuthbert’s just below the Edinburgh Castle. They are buried in communal ( or, rather “mass”?) graves that are, of course, unmarked, and typically located in the now grassy central parts of the cemetery as shown in this photograph I took yesterday. There are older laws banning the grazing of sheep or cattle on these churchyard fields; current laws are posted banning all animals, including dogs (except for certified service animals). 

St Cuthbert churchyard

Edinburgh is infamous for its early to mid nineteenth century grave robbers, body snatchers, or “resurrection men” who dug up recently buried bodies of people and sold them to surgeons of the University of Edinburgh Medical School for their anatomy dissection. And then there were the body snatchers (and complicit surgeons) who took it even further, murdering poor and homeless men and women on the streets and in flophouses. People who died in poor/workhouses and public insane asylums and whose families did not claim (and pay for) their bodies were sold by the Overseers of the Poor to the medical schools for dissection. Is it any wonder that poor and homeless people have a well-founded fear of public hospitals and related institutions? 

Empathy: Walk in My Shoes

IMG_4999Shoes are powerful markers of a person; shoes tend to hold the presence of the person who has worn them. In The Year of Magical Thinking, Joan Didion addresses this phenomenon. After the death of her husband from a massive heart attack, she finds herself holding on to his shoes. She writes, “I could not give away the rest of his shoes. I stood there for a moment, then realized why: he would need his shoes if he was to return. The recognition of the thought by no means eradicated the thought.”*

(…) It was the red sneakers Essie was wearing that drew me to her at the women’s shelter earlier that day. This was the second time in the past several months I had run into Essie at one of our foot care clinics. She wore an orange polyester shirt with a green chiffon scarf tied around her dreadlocks, a pink pleated skirt down to her ankles, and the red sneakers. She told me she only dressed in bright, Caribbean colors: “They keep me happy. I can’t be all down in the dumps when I got these colors on.” Essie had a perpetual and slightly crooked smile, the crookedness perhaps the residue of a stroke.

The women’s shelter is located in a church basement in downtown Seattle near the main shopping district. It is a day shelter, a safe zone for women and children, that serves homeless and marginalized “near homeless” women, especially women dealing with domestic violence. The shelter has multiple case managers, social workers, and volunteer nurses who try to connect women with health, housing, and social services. The shelter workers lend the women a hand, bend an ear to hear their problems, offer a leg up the socioeconomic ladder, a toehold on life. Empathy is their main tool. Empathy is what we try to cultivate in our health science students.

Empathy is “feeling with” as opposed to “feeling for,” which happens at arm’s length sympathy. “Walking in another person’s shoes” is how empathy is most commonly described. But can we ever walk in another person’s shoes? And is it always a good thing to try?

* quote is from Joan Didion, The Year of Magical Thinking (New York: Vintage International, 2006), p. 37.

Note: The above excerpts are from my essay, “Walk in My Shoes” in my book Soul Stories: Voices from the Margins (San Fransisco: University of California Medical Humanities Press), pages 11-12.